X

Challenging
Aphasia Therapies
Challenging
Aphasia Therapies
Broadening the discourse and
extending the boundaries
edited by
Judith Felson Duchan
and Sally Byng
First published 2004 by Psychology Press
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British Library Cataloguing in Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
Challenging aphasia therapies: broadening the discourse and extending
the boundaries / edited by Judith Felson Duchan and Sally Byng.
p. cm.
ISBN 1-84169-505-X
1. Aphasia. 2. Aphasia – Treatment. I. Duchan, Judith F.
II. Byng, Sally, 1956–
RC425.C485 2004
616.85′5206—dc22
2003022456
ISBN 0-203-46270-X Master e-book ISBN
ISBN 0-203-67656-4 (Adobe eReader Format)

ISBN 1-84169-505-X (Print Edition)
To Kay Glendinning, visionary and catalyst
Contents
Notes on contributors ix
Introduction 1
1 Challenging aphasia therapies 8

SALLY BYNG AND JUDITH FELSON DUCHAN
2 Aphasia therapies: Historical perspectives and

moral imperatives 19
MARTHA TAYLOR SARNO
3 Dare to be different: The person and the practice 32

CAROLE POUND
4 Evolving treatment methods for coping with aphasia

approaches that make a difference in everyday life 54
JON LYON
5 Context, culture, and conversation 83

CLAIRE PENN
6 Just kidding! Humour and therapy for aphasia 101

NINA SIMMONS-MACKIE
7 Learning from Roger Ross: A clinical journey 118

AUDREY L. HOLLAND AND AMY E. RAMAGE
8 Group treatment and jazz: Some lessons learned 130

ROBERTA J. ELMAN
9 The value of therapy: What counts? 134

JULIE MORRIS, DAVID HOWARD, AND SINEAD KENNEDY
viii Contents
10 Consumers’ views of what makes therapy worthwhile 158
AURA KAGAN AND JUDITH FELSON DUCHAN
Author index 173

Subject index 175
Notes on contributors
Sally Byng is Chief Executive and Director of Research for Connect—the

Communication Disability Network. She was head of the Department of
Language & Communication Science at City University and Professor of
Communication Disability there. She is a speech and language therapist
by background and has been in research for most of her career. Her
research has focused on developing, describing, and evaluating therapies
for people with communication difficulties after stroke, as well as under-
standing the experience of living with communication disability. She has
published widely on these topics, editing books, contributing chapters and
articles, as well as giving presentations and teaching internationally on a
regular basis.
Judith Felson Duchan is Emeritus Professor from the State University of
New York at Buffalo. She has published widely in language pathology.
Her particular emphases have been on autism, pragmatics, childhood
language, and aphasia. She is consultant for Connect, the Communication
Disability Network in London and for the Aphasia Institute in North
York, Canada. Her current projects involve writing a history of interven-
tion approaches in speech-language pathology in the US, and creating,
researching, and promulgating client-centred, life-participation approaches
to support those with communication disabilities and their affiliates.
Roberta J. Elman, PhD, CCC-SLP, BC/NCD, is President/CEO and
Founder of the Aphasia Center of California, an independent, nonprofit
organization currently providing conversational, reading/writing, caregiver,
and recreational groups for more than 90 individuals with aphasia and
their families in the Northern California Bay Area. Prior to beginning the
Aphasia Center of California, Dr Elman was Co-Director of Rehabilita-
tion at an outpatient medical rehabilitation center. She also served as
Director of the Speech-Language Department. Dr Elman has more than
20 years of experience in the assessment and treatment of neurogenic
communication disorders. She is the author of numerous professional
publications and is the editor of a recently published book for Butterworth-
Heinemann entitled Group Treatment of Neurogenic Communication Disorders:
x Notes on contributors
The Expert Clinician’s Approach. Dr Elman is on the steering committee
of the Academy of Neurologic Communication Disorders and Sciences
and serves on the ASHA subcommittee on Scope of Practice in Speech-
Language Pathology. She has also recently served as associate coordinator
of the ASHA Steering Committee for Special Interest Division 2:
Neurophysiology and Neurogenic Speech and Language Disorders.
Audrey L. Holland, PhD, CCC, BC/NCD, is Regents’ Professor of Speech
and Hearing Sciences at the University of Arizona. She has served on the
Advisory Council for the US National Institute on Deafness and other
Communication Disorders (NIH) and is currently a member of the
Secretary’s Advisory Committee on Prosthetics and Special Disabilities,
US Department of Veterans Affairs. She is Associate Editor of the Journal
of Communication Disorders, and a recipient of the Honors of the American
Speech, Language Hearing Association. She received the Clinical Achieve-
ment Award from the Academy of Neurologic Communication Disorders
and Sciences, and the Professional Achievement Award from the Council
of (US) Graduate Programs in Communication Sciences and Disorders.
She has published over 140 research articles, book chapters, and reviews,
has edited three books, and developed the test of functional communica-
tion called CADL (recently revised as CADL-2 with Davida Fromm and
Carol Frattalli).
David Howard is a Professor in the Department of Speech at Newcastle
University. Since 1972 he has been working with people with aphasia as
both a therapist and a researcher, exploring how the understanding of
the nature of language disorders can be used to improve and develop
aphasia therapy. Over this time he has worked in rehabilitation units, at
the Psychology Departments at UCL and Birkbeck, and since 1996 in
Newcastle. He and his colleagues are currently investigating how intens-
ive group and individual treatment can be combined to address both the
underlying language problems and the process of self-realization as an
aphasic person.
Aura Kagan is currently Programme, Research and Education Director at
the Aphasia Institute (incorporating the Pat Arato Aphasia Centre)—an
agency dedicated to service, awareness, education, research, and advocacy
for all those affected by aphasia. She has been instrumental in the
development of Supported Conversation for Adults with Aphasia™—an
innovative tool for increasing communicative access to life participation.
In recent years Aura Kagan has made numerous presentations and pub-
lished articles describing this approach and its applications.
Sinéad Kennedy Sinéad Kennedy trained as a speech and language
therapist on the Master’s programme in the Department of Speech at
Newcastle University. Here she experienced intensive therapy with people
with aphasia at the Newcastle Aphasia Clinic, under the guidance of David
Notes on contributors xi
Howard and Julie Morris. She is currently working as a Speech and Lan-
guage Therapist in child and adolescent psychiatry in her native Dublin.
Her current focus is the introduction of a speech and language therapy
service to a high support unit for adolescents with emotional and behav-
ioural difficulties.
Jon Lyon is the Director of Living with Aphasia, Inc., a non-profit agency
dedicated to addressing the long-term needs of people confronting aphasia.
He spends his professional time working directly with such individuals in
everyday contexts to make their lives more productive, rewarding, and of
choice. He has published numerous articles and book chapters on methods
dealing with such intervention. He is the author of Coping with Aphasia, an
in-depth chronology of facts and suggestions for minimizing the enduring
effects of aphasia, and returning purpose and direction to daily life.
Julie Morris co-ordinates the Newcastle Aphasia Clinic at the University,
a facility funded by the Tavistock Trust for Aphasia as a research project.
The project examines the efficacy of intensive speech and language therapy
for adults with aphasia. Julie completed her thesis in the Department of
Psychology at York University with Sue Franklin and Andy Ellis. The
work examined therapy with clients with auditory processing disorders.
This remains an area of interest for her, along with other aspects of
language processing in aphasia and exploring the therapy we use. She
has held a variety of clinical and research posts and enjoys the challenge
of attempting to combine clinical work with measuring efficacy of our
intervention.
Claire Penn trained at the University of the Witwatersrand in South Africa.
Soon thereafter she won a British Council Scholarship and spent some
time in England (at Cambridge and Reading) developing her interests in
linguistics and aphasia. On her return to South Africa, she taught at Wits
University and gained her PhD on syntactic and pragmatic approaches to
aphasia. She continued in this line of research, publishing on aspects of
assessment and therapy in adult and child language and on sign language.
Dr Penn is currently based in the United States at Case Western Reserve
University. Throughout her career Dr Penn has always kept active in
aphasia therapy, being the founder member of the Stroke Aid Society
in South Africa and co-author of the book Stroke: Caring and Coping.
She has been involved in advocacy groups and in the development of a
national stroke consensus document. In addition to her university position
(where she holds an endowed Chair) she has a private practice and acts as
a consultant for a rehabilitation hospital.
Carole Pound is Director of Therapy and Education at Connect—the
Communication Disability Network. Connect is a new national charity
offering therapy, education, and training underpinned by research. Con-
nect has developed from the work of the City Dysphasic Group at City
xii Notes on contributors
University, a therapy and support centre for people affected by long-term
aphasia, where Carole was centre director for a number of years. Prior to
this she worked as a speech and language therapist in acute and neuro-
rehabilitation settings. Carole has co-written a range of publications about
aphasia including The Aphasia Handbook and Beyond Aphasia—therapies for
living with communication disability. She is co-editor of the Aphasia Therapy
File.
Amy E. Ramage is an Adjunct Assistant Professor at San Diego State
University and is the coordinator of the Aphasia Clinic there. She has
worked as a speech-language pathologist in hospital and rehabilitation
settings as well as in pre-schools and schools. She received her PhD from
the University of Arizona where she was actively involved in the Aphasia
Research Project, both as a clinician and a researcher. Her independent
research has focused on understanding language breakdown in aphasia by
exploring how normal people break down and adapt to breakdowns in
language processing under stressed conditions. Her work is designed to
develop a model of adaptation to processing impairments in aphasia and
apply it to the development of new treatment paradigms.
Martha Taylor Sarno is Professor of Rehabilitation Medicine at the New
York University School of Medicine and Director of the Speech-
Language Pathology Department at the Rusk Institute of Rehabilitation
Medicine. Professor Sarno has been dedicated to the study and treatment
of acquired aphasia for several decades and has received many honours
and awards in acknowledgement of her contributions to our understanding
of the challenges of living with aphasia, ethical–moral issues, functional
communication, and patient and family advocacy and education. In 1982
she was awarded a Doctor of Medicine honoris causa by the University of
Göteborg, Sweden. She has edited several textbooks and is widely pub-
lished in journals, book chapters, monographs, and publications intended
for the patient and family. She is currently participating in a team working
with the Hastings Center for Bioethics in a study of the ethical–moral
issues encountered by the families of patients with aphasia secondary to
head injury. Professor Sarno founded the National Aphasia Association,
was a founding member of the Academy of Aphasia, and is Board Certified
in Neurologic Communication Disorders.
Nina Simmons-Mackie is Professor of Communication Sciences and
Disorders at Southeastern Louisiana University. She has worked for over
20 years as a speech-language pathologist in hospitals, home health, and
outpatient services. She has served as a rehabilitation programme manager,
speech pathology department director, clinical researcher, and university
teacher. She obtained a PhD from Louisiana State University. She has
received the Honors of the Louisiana Speech-Language-Hearing Associ-
ation, and the Clinical Achievement Award of the ASHA Foundation
Notes on contributors xiii
and is a Fellow of the American Speech-Language-Hearing Association.
Throughout her career she has focused on acquired adult communication
disorders, particularly aphasia. Currently, her key areas of interest include
aphasia therapy interactions, conversation in aphasia and related disorders,
social models of management, and applications of qualitative research.
Introduction 1
Introduction
This book is a challenge to established practices in aphasia therapy. Because

it does not take the commonplace for granted, it serves to broaden the
discourse and extend the boundaries of thinking about therapy. The authors
challenge professionals to:
1 include considerations of moral and ethical responsibility in their practices;

2 focus on engagement in life as well as on amelioration of language
impairments;
3 promote ways to identify relevant directions for therapy;
4 engage in reflexive thinking on how clinicians’ identities influence their
therapy choices;
5 engage in reflective thinking on issues such as power relationships in
therapy, the impact of limited resources, and benefits and blindfolds
created by clinical models.
The themes in this book were first raised at a conference in 2001 in the UK.
The conference marked the opening in London of Connect, the Commun-
ication Disability Network. The authors, each of whom presented papers at
this launch conference, argue here that the best therapies are conducted in
a reflective environment wherein all are involved in the process of service
delivery, including those with aphasia. Growing out of the authors’ personal
reflections, the chapters raise important issues for speech language therapists/
pathologists and their clients with aphasia. Below is a chapter-by-chapter
taste of the specific treats in store for readers.
Chapter 1. Challenging aphasia therapies

Sally Byng and Judith Felson Duchan
As editors, we introduce the book by highlighting what we take to be some
of the challenging themes—ones that many of the authors touch upon. There
are nine such themes:
1 Combining the personal and the professional

2 Challenging the tacit assumption of cure
2 Introduction
3 Addressing time, resource, and system barriers to quality therapy
4 Providing enough time to attain personal change
5 Understanding that aphasia is more than a language impairment
6 Dealing with power relations during therapy
7 Recognizing misplaced therapies and identifying misguided therapists
8 Combining therapy, philosophy, and tools
9 Making room for reflective practices
In Chapter 1 we talk about the different challenges associated with these

themes, and invite readers to reflect on their own practices as they engage in
imaginary dialogues with the authors.
Chapter 2. Aphasia therapies: Historical perspectives and moral imperatives

Martha Taylor Sarno
The scale of the challenges being set out in this book is made plain right from
the start by Martha Taylor Sarno, who reminds us that the enterprise of
aphasia therapy relates to the “moral worth of humanness”. She pulls no
punches—providers of therapy are “members of a moral community seeking
to empower and restore individuals to a meaningful life experience”. And the
challenge doesn’t end there. She situates therapy as an ethical responsibility.
Human freedom is at stake for people who have difficulty communicating.
The moral imperatives for therapists that this stance implies are awesome but
real. What is just as awesome, but in a different way, is that Martha Taylor
Sarno has been upholding the moral and ethical challenges of aphasia therapy
for over 50 years, publishing her first paper in 1951, through times when her
perspective was not recognized or possibly even valued. But that has not
made a difference to her view, and she has remained constant to her theme.
Her chapter takes a historical perspective on the thinking behind aphasia
therapies. She confronts the tensions that exist between two approaches: the
better researched and resourced approaches that focus on remedying the
impairment, and approaches that address the role that society, the self, and
social stigma play in making the processes of learning to live with aphasia
even harder.
This author reveals the impact of the current culture and practice of
health care in the United States on services to people with aphasia and
contrasts that with the complexity of the process of learning to live with
aphasia. She identifies the core of learning to live with aphasia as being
about “transition and transformation”. How can that be achieved in a very
few prescribed sessions of therapy? She sounds an alarming note of caution:
the current healthcare environment in the US may be permanently damaging
the possibility of rendering care that is both relevant and responsible.
Chapter 3. Dare to be different: The person and the practice

Carole Pound
The challenges continue in Carole Pound’s chapter, where she reveals the
personal barriers she has faced on her journey both as a therapist and as
Introduction 3
someone learning to live with disability. She provides a powerful and absorb-
ing insider’s perspective on the complexities of the “recovery” process—the
conflicting, sometimes opposing and confusing factors that influence the
process of adapting to a new life. She draws convincing parallels between
learning to live with pain and the issues that people learning to live with
aphasia are grappling with.
Her insider’s perspective of both the therapist’s mindset and the pre-
occupations of the “patient” enable us to see how conflicts can arise in
the recovery and treatment process which might become barriers to the
re-engagement with everyday life for people new to disability. The fact that
these conflicts may not be articulated and may exist through tradition and
familiarity underlines the value of reflective practice. Carole challenges the
power dynamics underlying much rehabilitation practice, underscored by
both the media and long-held perceptions of disability.
The chapter ends with a brief description of some tools for the therapist’s
toolbox which can enable therapy practice to facilitate a more positive
perspective on disability, enable people to see and take up new directions, to
take more control over their new lives, and to identify small changes that
can have bigger impacts. The author provides insights on why the process of
aphasia therapy can be so puzzling for the therapist too: the chapter should
empower therapists to cope with the contradictions, anxieties, and ups and
downs that they often face in partnering people who are learning to cope
with unanticipated difference.
Chapter 4. Evolving treatment methods for coping with aphasia approaches that
make a difference in everyday life
Jon Lyon
Dealing with the everyday, the substance of life, is a major theme in Jon
Lyon’s chapter. He begins with a reflection, in keeping with many of the
chapters in this book, on the progression of the directions his therapies
have taken during the course of his professional life. And he ends with a
description of the life-discipline that he is applying to develop and enhance
his own quality of life—using lessons learned from people with aphasia. In
between, Jon Lyon challenges the traditions of aphasia therapy. He con-
ceives of therapy as addressing “broken life systems”. This enables him to
convey a practical, problem-solving way in to focused, holistic therapy. He
illustrates the provision of targeted activities that have wide implications,
involving a variety of players in the aphasic person’s life and with the person
with aphasia playing an instrumental role in the implementation of his or
her own therapy.
In this chapter one of the many challenges that Jon Lyon poses to the
therapy community is to question concepts of coping currently being used.
He suggests that coping is often portrayed as a long drawn out process,
requiring many stages. Jon, in keeping with his focus on practical problem
solving, views coping as dealing with the immediacy of the moment, with
flexibility in dealing with life as both it and the person with aphasia change.
4 Introduction
In the context of recognizing that for someone with aphasia life will never be
the same again, Jon Lyon emphasizes the value of enabling the person with
aphasia to address changes to key personal relationships.
Chapter 5. Context, culture, and conversation

Claire Penn
Claire Penn’s introspection into the therapy journey is brave. In this chapter
she describes both the journey she has taken as a therapist, leaving us with
vivid accounts of the milestones that shook and shaped her perspective on
the role of aphasia therapist, and the journey of one particular woman with
aphasia, Valerie Rosenberg, with whom she worked. The two voices that
come through in the chapter, Claire Penn’s and Mrs Rosenberg’s, convey
the collaborative nature of the process of therapy, a collaboration that rarely
comes across in published accounts of therapy. The direction and focus of
therapy seems more usually to be determined by the therapist rather than by
a genuinely joint endeavour.
We describe the introspection as brave because Claire Penn lays open to
inspection not only the therapy but also the companionship and support that
she offered to Mrs Rosenberg and gained from her. In the prevailing positivist
tradition of writing about therapy, few authors would risk describing this
holistic approach to providing a service to someone learning to live life with
aphasia. However Claire Penn was led in what she provided largely by the
explicitly expressed needs of Mrs Rosenberg, which, significantly, resulted in
the breadth of issues that they addressed together. She ends by offering
some perspectives on the characteristics required of an aphasia therapist,
memorably exhorting therapists to realize both that “perkiness is not next to
godliness” and, more soberly, that therapists need to “accept ambiguity,
uncertainty, and change, for after all that is what life is”.
Chapter 6. Just kidding! Humour and therapy for aphasia

Nina Simmons-Mackie
Nina Simmons-Mackie is serious about being funny. Her chapter concerns
how to “do” humour in therapy and she provides a rich catalogue of tools
for the therapist to use in “doing humour” in therapy. She illustrates vividly
how therapy is so much more than task or activity. Therapy also relies
heavily on the dynamics between therapist and person with aphasia. Humour,
as Nina conveys, is a wonderfully rich vehicle for these dynamics. If tasks
and activities are the “engine” of therapy, then we learn that humour can be
the critical oil that keeps the engine turning. But more than that it can be
powerful as a therapeutic tool in its own right, reaching the parts that other
therapies cannot reach.
Instead of seeing humour as an optional extra to the serious business of
communication work, we see that humour in and of itself can effect critical
change. Many therapists might regard the ability to use humour therapeut-
ically as being dependent on the personality of the therapist. Intriguingly,
Introduction 5
Nina Simmons-Mackie provides us with a range of techniques to use, which
could be learned and adopted by any therapist. Therapists might find the
concept of developing a “humour assessment” both liberating and a wel-
come change from the usual routine of assessment construction!
A theme running throughout the chapter is of the inappropriate use of
professionalism, which she dubs “terminal professionalism”. We challenge
any therapist who reads this chapter to resist trying out some of the wealth
of ideas within it.
Chapter 7. Learning from Roger Ross: A clinical journey

Audrey L. Holland and Amy E. Ramage
The impact that a person with aphasia can have on both the therapy and
the therapist comes through strongly in Audrey Holland and Amy Ramage’s
chapter. Here Audrey describes the therapy that she undertook with Roger
Ross, who appears as a charismatic and powerful man. Roger Ross’s skills in
self-diagnosis, identifying what he needed in therapy and campaigning for
and developing long-term support systems for people with aphasia, demon-
strate the importance of sharing power in the therapy relationship. Audrey’s
preparedness to listen, to respond, and to share the role of developing the
content of therapy with Roger Ross enables them to engage together in
effective therapy.
These authors, by example, ask clinicians to attend to how the person
with aphasia perceives his or her difficulties, and what will help the person to
address those difficulties. Those perceptions can enable the therapist to
short-circuit the more traditional process of professionally led formal assess-
ment. Careful listening and space given for the person with aphasia to
explore can lead to conclusions about what to address in a more creative
way. The matching of the therapist’s ingenuity, and preparedness to try
something unfamiliar, in response to the aphasic person’s insights can lead
to innovative and effective therapy. The real meaning of therapeutic part-
nership and “patient-centredness” (a much misused phrase) comes across
vividly in this chapter. The philosophy underlying Audrey Holland’s therapy
is clear—that of maximizing the strengths of the person with aphasia. She
and her co-author illustrate in this chapter how her principle governs her
way of proceeding in her work with people with aphasia.
Chapter 8. Group treatment and jazz: Some lessons learned

Roberta J. Elman
The theme of mutual engagement in therapy with the person with aphasia
is also central in Roberta Elman’s chapter. It is evident in a number of
issues she covers. She is frank in looking back over her career as a therapist,
wishing that she had, on occasion, worked differently. She remembers
feeling compelled to do highly structured therapies when she felt much
more inclined to listen to people and engage with them where they were, in
what mattered to them.
6 Introduction
The theme of her chapter, likening the process of undertaking therapy for
aphasia to the process of musical improvisation, provides a helpful image for
therapists thinking about how to “do” therapy. The process of therapy as she
describes it is very liberated. She says that it may not even feel as if therapy
is being done, particularly in group therapy, the medium that she uses
predominantly in her work. Therapists let the group take its own direction.
This means that the therapist must trust people to develop the therapy in
the way that is most useful for them. Roberta challenges therapists to think
about whose needs really determine the course of therapy: those of the
therapist (and perhaps the organizations and systems within which they work)
or those of the person with aphasia.
Chapter 9. The value of therapy: What counts?

Julie Morris, David Howard, and Sinead Kennedy
Challenges to what we perceive to be success or improvement in therapy are
offered in the chapter by Julie Morris, David Howard, and Sinead Kennedy,
raising issues about “what we value in change”. They describe the work that
they undertook with an individual, in a setting where they could provide
therapy on both a one-to-one and a group basis. What will be striking for
many readers is that this therapy began when the person, Lawrence, had
lived with aphasia for 7 years. The authors begin the chapter by describing
the nature of the impairments that Lawrence featured, and then relate it
to the therapy that they designed. As in the case of Roger Ross in Chap-
ter 7, the areas that the therapy addressed were shaped not just by test
results, but also by the perceptions of both Lawrence and his wife about
the priorities they faced in communication. In keeping with the current
emphasis on implementing evidence-based practice, the techniques they tried
were generated largely from ideas culled from the research literature on
effective methods of tackling specific impairments.
These authors evaluate the effects of the therapy in a range of ways, by
reviewing Lawrence’s “performance” on measures of his impairment, but
also by taking seriously his perspectives (and those of his wife) on his ther-
apy. It was clearly important to Lawrence that he was gaining control over
the situation in relation to his communication, and that his perspectives
on the therapy and how he was engaging with it were acknowledged. As
is so familiar to many therapists, measures of the changes to Lawrence’s
“performance” showed little change, while his perceptions suggest that he
has gained considerably from the therapy.
Chapter 10. Consumers’ views of what makes therapy worthwhile

Aura Kagan and Judith Felson Duchan
The ownership of expertise about aphasia is at the heart of Aura Kagan
and Judy Duchan’s chapter. Who has the right to identify and describe
the changes that therapy has made to someone with aphasia? The range
of frameworks that are currently used to evaluate aphasia therapies and the
Introduction 7
methodologies for gaining user (or consumer) evaluation of therapies are
reviewed. Aura and Judy make the case that the dimensions of change as
defined by people living with aphasia are different from those defined by
others, especially healthcare professionals, who focus more narrowly on
dimensions of impairment or service delivery.
Their chapter describes a process that they undertook with aphasia
“veterans”—people who have long experience of living with aphasia—to
reveal the critical dimensions of change as they perceived them, and in so
doing they identify a methodology that could be repeated in any clinical
context. As has become familiar in outputs from the Aphasia Institute in
Toronto, they propose a highly practical, engaging, and relevant resource
to act as a communication ramp in enabling people to reflect on what
matters to them about how their lives have changed, and what those changes
are. These perceptions about relevant dimensions of change also have
implications for the content of therapy. If people perceive the important
dimensions of change as relating to participation in life, how they feel, and
how the world treats them, then these must also be key areas to address
in therapies.
The chapter demonstrates that the challenge of authentic inclusion in
consultation, for people whose disability is in the very medium of con-
sultation, not only can, but also must, be met. In doing so we change
the traditional power relations of therapy—people with aphasia as the con-
sultants and advisors, not therapists—offering new revelations to enable
improvements in practice.
8 Byng and Duchan
1 Challenging
aphasia therapies
Sally Byng and Judith Felson Duchan
This is a book of challenging musings by speech-language therapists/

pathologists who work with individuals who are living with aphasia. The
authors, international authorities in the field of aphasia therapies, explore
their thoughts about how people with aphasia live with their communication
disabilities and how they learn new ways of communicating. The authors
also explore how they, themselves, have learned about doing therapy through
the process of engaging in it.
While those writing these chapters have published widely, here they are
departing from what they are accustomed to. The usual mode in journals and
books in the field of speech-language therapy/pathology is to write objectively
about impairments, tasks, and client progress. In this book, the authors
become introspective, and focus on their own experiences as clinicians and
on their relationships with their clients. They ruminate about learning
processes—both their own and their clients. And in doing so they reveal
some of the conundrums arising from working in the field of aphasia therapy.
The book is intended for speech-language therapists/pathologists and
students in English-speaking countries who work with people living with
aphasia. It may also be of interest to researchers and practitioners in therapy-
based professions, e.g., psychology, psychotherapy, and occupational therapy.
The writing is reflective and personal, and includes particular examples and
issues that have given the authors pause.
Our authors have challenged their ways of doing “business as usual” in
different ways. Some have taken a long hard look at their own identity as
therapists and examined some of the principles and ethics underpinning
their perspectives on therapy (Martha Taylor Sarno, Carole Pound, Jon
Lyon, and Claire Penn). Others have reflected on the nature and process of
therapy, sometimes using different media (music and humour) to provide a
fresh perspective on interaction in therapy ( Nina Simmons-Mackie, Roberta
Elman, Julie Morris, David Howard, and Sinead Kennedy). And still others
have offered some examples of practices in providing therapy or getting
feedback on outcomes, which reflect their views of the relationship between
the therapist and the person with aphasia (Carole Pound, Audrey Holland,
Amy Ramage, Aura Kagan, and Judy Duchan).
1. Challenging aphasia therapies 9
A number of themes emerge from the writings in this book. Here we will
give you a peek at a few, others we leave for you to discover on your own as
you read these challenging chapters.
COMBINING THE PERSONAL WITH THE PROFESSIONAL
Perhaps one of the most obvious features of this book is the sense of the
personal journeys that the contributors have undertaken in their development
as therapy practitioners. What is clear is that being an aphasia therapist
requires a willingness to be open to personal change, to face personally
difficult issues, and to be prepared to think about and learn from one’s
personal experiences. Therapists must also be prepared meet the challenges
that come from interacting with others, their clients, who are facing major
life changes. Taking on such concerns requires not only the skill to support
others but also the ability to reflect on one’s own life issues, and a willing-
ness to be open to challenges and questions.
Several of the authors provide examples of how to integrate the personal
with the professional. They do this in different ways. Martha Taylor Sarno,
when reflecting on what it means to be a person and a therapist, asks that
we be aware of our own feelings of vulnerability and that we examine our
personal assumptions about the relevance of our therapy approaches. Carole
Pound follows suit by plumbing her own experiences as a patient. Carole
also draws lessons for the disability movement as she outlines some parallels
between her personal and professional experiences.
Claire Penn and Nina Simmons-Mackie offer other takes on how to relate
the personal and professional. Claire considers how her former teachers
facilitated her search for a personal way of doing therapy, and Nina sees
humour as a way for professionals to become more accessible personally to
their clients.
Reading these authors’ personal accounts reveals their rich potential for
developing insights for aphasia therapies. Until now there has been little
attention given to the personal side of therapy in the literature on aphasia.
We do not seem to think about the impact that working with people with
aphasia can have on how and who we are. Nor do we look directly at who we
are for our impact on our clients. The contributions in this book demonstrate
how creative and liberating it can be for therapists to examine their personal
histories to discover how best to conduct themselves in their therapies.
CHALLENGING THE TACIT ASSUMPTION OF CURE
There is another area of reflection running through the chapters in this

book. It has to do with the fact that therapists cannot offer a cure for
aphasia. Now this may not feel like a very novel observation, but a number
10 Byng and Duchan
of the contributors hint, directly and indirectly, that therapists might not
recognize this fact. How much does the way we practise actually suggest,
covertly, to people with aphasia that we think they can get back to where
they were before their stroke? By taking them through steps to help them
“get better” are we giving them the false assumption that the steps will
eventuate in cure?
Even if we were to be explicit about the long-term and chronic nature
of aphasia, we must still contend with the stories conveyed in the media
and other venues of popular culture that promise what Carole Pound has
described as “restitution stories”, in which the person with the disability
conquers the problem and returns to his or her former life.
What are people living with aphasia to make of the fact that we think
we can help them to get so far, but no farther? This worry is poignantly
expressed by Valerie Rosenberg, who is quoted by Claire Penn as asking
questions such as “Is this permanent or what?” in reference to her aphasia,
and wondering “What happened with my bargain with God?”.
What support are we giving our clients to deal with the impact of not
being able to be who they were again? Martha Taylor Sarno addresses this
need for support explicitly as an ethical issue. If therapists provide therapy
for only a part of the impact of aphasia, and knowingly do not provide
support for other aspects of the impact, particularly if those impacts affect
functioning in life, is that practice ethical? Claire Penn’s description of her
client who committed suicide, despite having made what Claire judged to be
an excellent recovery, demonstrates the importance of this issue. And Carole
Pound offers some suggestions for how to become involved in supporting
people to “live with aphasia”. She recommends “doing therapy differently”
with a focus on the social and everyday life aspects of the disability.
Julie Morris, David Howard, and Sinead Kennedy raise issues about the
differences in therapy in the acute stages and therapy delivered several years
post-onset. What must it be like for someone who has lived for 7 years with
an impairment, and the disability that stems from it, to return to therapy?
What is someone looking for and anticipating will happen at this stage?
How do ideas of therapy cures change with time?
ADDRESSING TIME, RESOURCE, AND SYSTEM

BARRIERS TO QUALITY THERAPY
Jon Lyon and Martha Taylor Sarno raise a further, related issue: the use of
resources. How much does providing therapy for aphasia cost? Jon Lyon
tells us the cost of his course of intervention with Patty, and broadly what
was achieved for the expenditure. He effectively raises the question—what
do other therapies achieve for people with aphasia, in life terms, at what
cost? This is a bald question, but one that, we suspect, is not met directly
enough by people providing services.
We bemoan the lack of available resources. Martha Taylor Sarno and
Jon Lyon bring this problem home as they describe the virtually negligible
support for aphasia therapy in the current US healthcare system. But we do
not see evidence that service providers have thought through what that
means for the priorities in providing therapy, nor researchers asking what
that means for the priorities in research.
How, for example, do therapists negotiate with people with aphasia
what service they could deliver in, say, 20 sessions? If a therapy would need
much more than 20 sessions, yet that is all that is realistically available, is
it ethical to embark on it, when it is unclear whether the remaining time
needed to have an impact on someone’s life will be funded? And do we make
that evident to people at the outset? These are crucial questions facing all
therapies.
Much of the literature suggests that for therapy to address the impairment
effectively, many sessions are required. When therapists realize they do not
have this option, do they give up and not even start therapy because they
know they do not have the resource required at the outset? Jon Lyon offers
an interesting solution to this vexing problem. He suggests that we could do
a lot more to empower our clients to manage their own therapy, after which
point they won’t need a therapist! Martha Taylor Sarno provides another
direction for solving the resource problem. She invites clinicians to examine
how to use existing resources such as adult education and access to other
community-based resources to support those with aphasia.
In their chapter, Julie Morris, David Howard, and Sinead Kennedy add
yet another issue to the concern about resources. A common assumption
made by therapists and those with aphasia has been that with more
resources, the desired improvement would be obtainable. This was not
the case for their client, Lawrence. Even after their intensive 162 hours of
language therapy, Lawrence did not improve dramatically on the quantitat-
ive measures used, but he and his wife felt that significant gains had been
made—both in the use of a specific strategy to support communication and
in his confidence. This leads to questions about how much and what type of
therapy is required to increase confidence, which seems to have been an
important by-product of the therapy for Lawrence.
PROVIDING ENOUGH TIME TO ATTAIN

PERSONAL CHANGE
It does not take much imagination to see that becoming aphasic represents
a major life event, for anyone. Nor does it take much imagination to realize
that recovering from losing your ability to talk and learning to live a new
way of life cannot be achieved overnight, or even in a few months, as is
brought home in Claire Penn’s story of Valerie Rosenberg’s phases of therapy,
and in Carole Pound’s description of the phases of living with a disability.
12 Byng and Duchan
It is clear from Valerie’s own words and Claire Penn’s description of the
therapy process that people learning to live with aphasia must go through a
significant period of personal development and skills acquisition. Essentially
that is what rehabilitation involves—learning new skills and adapting your
identity—regardless of the disabling condition you are experiencing.
Why is it that we have had such difficulty getting across this obvious
message about the importance of long-term rehabilitation, especially to third-
party payers? Could it be because of the undue focus on sophisticated
neurolinguistics, on the complexity of the impairment, on the creation of a
scientific mystique around aphasia, that Martha Taylor Sarno draws atten-
tion to? Have we obfuscated many of the other real issues where people need
support in our efforts to gain scientific credibility? And in so doing, have we
prevented the people who make decisions about healthcare spending from
understanding the significance of aphasia in people’s lives, and what it takes
to provide people with the support they need to make their journeys back to
life again?
Aura Kagan and Judy Duchan talk about these issues in relation to how
aphasia therapies have been evaluated. These authors review the various
approaches to measuring therapy outcomes and conclude that even those
outcomes that are consumer-based do not probe deeply enough into the
dimensions of success that are in the minds of those with aphasia. The
authors identify various things that have blocked professionals from obtain-
ing authentic client-based evaluation of their therapies, and then offer some
solutions to these professional barriers.
UNDERSTANDING THAT APHASIA IS MORE THAN

A LANGUAGE IMPAIRMENT
Aphasia is a life-changing event. All of the chapters in this book attest to

that. The authors treat recovery as a complex process and provide examples
of their attempts to address multiple issues that arise for people. What they
reinforce is that planning a programme of therapy for someone with aphasia
needs to comprise an imaginative, broad-based range of opportunities. Those
opportunities should have to do with language and communication, identity
and lifestyle, involving not just the person with aphasia, but those with
whom they live. None of the chapters takes into account only one of these
facets of therapy. How the balance of those components is negotiated is
complex. It is what Jon Lyon calls a “systems” approach.
The invisible nature of aphasia is, according to Martha Taylor Sarno, a
large part of the difficulty in coping with it. For example, a commonly
occurring aspect of aphasia is psychological depression and isolation, which
has to do with the general experiences related to suffering and depression—
something that is not obvious to those who see the problem strictly in terms
of language impairment. Carole Pound asks that we see aphasia therapy as
including the everyday aspect of the disability, and how to cope. She offers a
number of examples of how support at this level is needed to meet therapy
relevant for clients with aphasia—suggestions that go beyond working with
language impairment.
Claire’s Penn’s “pragmatic, wholistic” therapy involves a set of strat-
egies to meet her clients’ life challenges. Early in her client’s therapy, Claire
developed with Valerie Rosenberg a set of verbal mediators, strategies, hints,
what Claire calls “one-liners” to guide Valerie in organizing, remembering,
conversing, and coping as she engaged in everyday life activities. (Helpful
strategy guides like this are also a feature of Audrey Holland’s work with
Roger Ross.) Later, in their course of therapy that Claire calls “taking stock”,
she and Valerie worked on setting directions for the future.
When Jon Lyon describes his client with aphasia as experiencing a “loss of
intimacy”, as someone whose life has been thinned out because of her con-
finement, he is seeing aphasia as much more than a language impairment.
And when Nina Simmons-Mackie makes an appeal for including humour in
the scope of communication and communication disability, she is seeing
language and communication as ranging beyond words and sentences into a
wonderful new realm of the comical.
DEALING WITH POWER RELATIONS DURING THERAPY
What the chapters in this book also reveal is that it is not sufficient only to
think about the topics that therapy addresses—one must also consider the
role that the therapist plays and how therapy is conducted. Nina Simmons-
Mackie, Aura Kagan, Judy Duchan, and Carole Pound all draw attention to
the power that the therapist wields. The impact of the relationship on the
outcome of therapy is also described by Roberta Elman, Audrey Holland,
and Carole Pound. All argue strongly for client-directed approaches rather
than clinician-dominated ones. Carole Pound, for example, describes the
authoritarian clinician who assumes all of the responsibility for therapy
direction and content. She makes a strong appeal for clinicians to give up
their power and allow their clients to identify their own problems and the
course of therapy.
When analyzing the dynamics of humour in a therapy session Nina
Simmons-Mackie makes the startling discovery that therapists are the ones
who usually crack the jokes and the ones who have the option of whether or
not to laugh. She found it to be the notable exception when a client initiated
humour or failed to respond to something funny said or done by the clinician.
She takes these as signs of the power of the therapist over the client.
Roger Ross, the person Audrey Holland and Amy Ramage introduce us
to, was interested in directing his own therapy groups and in controlling his
14 Byng and Duchan
own therapies. This raises another issue of client power—does client power
ever need to be challenged? We would suggest, as do Carole Pound, Audrey
Holland and Amy Ramage that clinicians who empower their clients need
also to know when not to go with the clients’ preferences. Roger Ross’s
disdain for coffee and cake groups should not be presumed to be the opinion
of other people with aphasia.
Aura Kagan and Judy Duchan offer a method for giving those receiving
therapy the means to evaluate their own progress. The structured inter-
views, using methods of supported conversation, offered the people they
talked with a way not only of evaluating the success and failures of their own
therapies, but also of discussing aspects of therapy that they would recom-
mend to others with aphasia.
RECOGNIZING MISPLACED THERAPIES AND

IDENTIFYING MISGUIDED THERAPISTS
Our authors are not only adventuresome in exploring new areas of therapy,
they are also willing to take the risk of criticizing their own past therapies
and those of others. Mistakes in the choice and execution of therapies are
described by:
• Martha Taylor Sarno when she talks about the minimal attention in the
past to psychosocial aspects of aphasia;
• Nina Simmons-Mackie in her examples of humour that is either
misplaced or offensive;
• Jon Lyon when he talks about “restoration therapies” that have a single
focus on changing a small part of an impairment;
• Audrey Holland and Amy Ramage who give an example of a therapist
who lacks self-doubt, assuming she knew better than her aphasia client
about whether there is such a word as “pert”;
• Roger Ross, Audrey’s client, who was able to describe/diagnose his dif-
ficulties (e.g., “I have no sound patterns in my head”) more succinctly
and transparently than his clinicians might have done (e.g., “difficulty in
accessing the phonological lexicon”);
• Roberta Elman who remembers with embarrassment and regret her
early therapies composed of drills, which she used to consider the
important work, to the neglect of conversation, which she then con-
sidered to be fluff;
• Carole Pound, who remembers a time when she was searching for a
therapy grail, and ignoring the everyday aspects of disability;
• Carole Pound, again, who remembers her own stories being hijacked
and misinterpreted by medical professionals;
• Aura Kagan and Judy Duchan who critique evaluation done without
consumer consultation.
COMBINING THERAPY, PHILOSOPHY, AND TOOLS
Each of the authors in this volume addresses issues about the doing of
therapy. It becomes obvious, when probing their attitudes, that their ther-
apies are underpinned by powerful philosophies about the nature, content,
and ethics of change for people living with aphasia. These philosophies find
their expression in the specific therapies and tools used.
In Martha Taylor Sarno’s chapter she traces the functional philosophy of
clinical practice in aphasia to frameworks used in rehabilitation medicine.
She also presents a moral perspective for deciding among aphasia therapies,
and from this perspective advocates for aphasia to be treated as a community
issue, and as an issue that does not fit with a traditional view of aphasia as a
medical problem.
Carole Pound also offers a philosophical rendering of aphasia therapy.
She regards therapy as an organic, ever-changing, lived experience that in-
volves collaboration and negotiated reflection between therapist and client.
Her non-authoritarian, complex view of the nature of therapy leads her to
prefer some sorts of therapies and clinical tools over others. She favours
therapies such as doing poetry, countering the restitution narrative, and
training partners to converse with those who have aphasia. She warns against
using therapies that are based on impossible dreams and those that treat the
person with a disability as a patient rather than a person.
Jon Lyon advocates therapies that impact on daily living (having substance),
ones that are long-term (sustainable), and ones that are cost-effective. He
acknowledges the conflict between long-term and cost-effective values, and
designs therapies that empower those with aphasia to manage their own
therapies.
Jon Lyon’s therapies stem from a model that he and his colleagues in
America have called a “life participation approach” to aphasia. The model, a
version of which is presented in Jon’s article, leads to various therapies that
he describes in relation to his client Patty. These include slowing up interac-
tions, using key words, arranging for his client to volunteer, working with
Patty to assume more household responsibilities, and the use of interactive
drawing. Jon used these methods as tools to enhance connections between
his client and her family members. The philosophy of the therapy was a
life-participation one. His philosophy led him to analyze his client’s social
interactions in terms of barriers and facilitators. The analysis then led him to
the selection of therapy tools for removing barriers and facilitating family
interactions and activities.
Claire Penn also regards the purpose of therapy as life-empowering. She
calls it “humanistic” because it is not prepackaged, she calls it “pragmatic”
because it is sensitive to everyday life contexts and needs, and she calls it
“conversational” because it focuses on social communication, rather than on
fixing someone’s language impairment. Her hope for therapies is that they
allow the person to transcend their aphasia identities—a hope that regards
16 Byng and Duchan
aphasia as much more than a language problem, and regards people with
aphasia as more than their disability.
Funny therapy, that which incorporates and values humour, is not your
usual take on what clinical activities and interactions look like. Nina Simmons-
Mackie, by focusing on humour that accompanies therapy, widens the view
of what counts as language and communication and challenges usual notions
of what constitutes therapy. Her philosophy, drawn from conversation analysis
among other places, views humour as a necessary and positive interactional
genre. In so doing, she challenges the ordinary boundaries of professional-
ism (as serious business) and invites clinicians to have fun as they interact
with their clients.
Roberta Elman worries about the success and validity of therapies that are
carried out in a drill format, presenting material as content to be memor-
ized. She argues convincingly that “making language”, like improvising in
music, needs to be seen as a creative process, and one that is controlled by
the language or music maker, not the music teacher or therapist. She also,
by personal example, encourages clinicians to take risks and break new therapy
ground. She describes a stage in her thinking when doing group therapy
didn’t fit her notion of therapy, and how breaking out of that restriction was
liberating for her.
Maximizing strengths is the philosophical principle that guided Audrey
Holland’s therapy with her client Roger Ross. She and Amy Ramage, her
co-author, advocate taking risks by doing therapy that might seem foolish.
Their “fools rush in” approach involved trying unproven methods—an espe-
cially brazen suggestion at this time when healthcare professionals need to
justify what they are doing by citing evidence-based research. Noteworthy in
this chapter are the vivid descriptions of the particular therapy tools selected
(e.g., autocueing, provision of homework, and use of crib sheets), that both
meet her client’s needs and are consistent with the clinician’s own philo-
sophy of therapy.
One of the several philosophical imports of the chapter written by Julie
Morris, David Howard, and Sinead Kennedy has to do with the usefulness
of therapy evaluations that do not mesh with the client’s sensibility about
therapy progress. They offer an example from their client, who felt he had
made considerable progress in reading—progress that was not revealed by
the objective tests. They conclude that tests don’t tell the whole story, nor
do evaluation measures based on client feedback. They see evaluation meas-
ures as tools that should change depending on the questions being asked and
by whom.
A second philosophical issue that they raise has to do with the way group
therapy is regarded. In a philosophical frame that treats aphasia as a lan-
guage impairment, clients see individualized therapy as a better means to
their goal of improving their language. Groups in this philosophical frame
are good for practising language skills learned in individual therapy. Experi-
ences of group therapy seem to be regarded by clients more favourably (as
described by Roberta Elman and Carole Pound) when they are explicitly
working within a different philosophical frame, a frame of reference regarding
aphasia as more socially based. In this frame, issues related to the challenges
of living with aphasia, coping with disability, and the disabling barriers
imposed by others may be more easily and satisfyingly addressed in a group
problem-solving setting than in an individual session. The key is to match
the frame to the changing needs, priorities, and perceptions of the person
with aphasia. This may involve challenging their perceptions, attitudes, and
interactions.
As you may have noticed, this introductory chapter is replete with questions
and issues raised–questions without answers. This is in keeping with a book
about challenges and reflections. We feel the need to enter a period of
challenging questions that lead us to a mood of introspection rather than
one of finding quick solutions or easy answers. In this period of worldwide
re-evaluation of healthcare resources and allocation, it behoves us to tread
carefully and talk to one another about our perception of priorities and
need. Our authors, who would generally be regarded as the ones to go to for
the answers, are here raising the important questions. They have begun a
dialogue that we invite others to join, in various forums—practice, research,
education, and collaboration with service users.
MAKING ROOM FOR REFLECTIVE PRACTICES
The challenges raised by our authors lead to a strong call for therapists to
engage in both reflexive and reflective practices. Reflexive practices have to
do with considering the personal aspects of doing therapy. Reflective prac-
tices relate to how therapy is going in general. Much is written about both
the reflexive and reflective practitioner in occupational therapy, social work,
and in other areas of the health professions. But there is little attention given
to this in the field of speech and language pathology/therapy. This is not to
say that therapists are oblivious to how things are going for themselves or
their clients, but rather that their reflections are seldom shared or talked
about in the literature. Nor are they built into the course of everyday prac-
tice. Such activity, because it is so unfamiliar, is likely to be considered self-
indulgent or even pompous.
Our authors give readers of this volume a model for both reflexive and
reflective practices. They show, by example, the value of (1) examining their
personal histories and values for insights into their current decision-making
practices; (2) examining how aphasia therapists in America got to where
they are today; (3) evaluating the medical model and its inherent notion of
cure; (4) being supervised by seasoned therapists; and (5) engaging clients
in reflection about the relevance of their therapies. The authors do not all
draw the same conclusions from their musings. Rather, they represent a
18 Byng and Duchan
rainbow of practices, offering yet another challenge to the reader, who can
examine different approaches from the point of view of those who advocate
for them.
This book is a response to our felt need to create a venue within which
aphasia therapists could think and reflect alone and with others about what
they are thinking and doing as they carry out their therapies. The authors
show how they have changed what they do as a result of spending time
thinking about what they have done. They demonstrate, by example, how
personal and professional reflection has provided them with a broader
understanding of their therapies and has made them more open to change.
We thank them for their courage, and hope that their examples motivate
others to think and talk about the challenging issues they raise.
2 Aphasia therapies:
Historical perspectives
and moral imperatives
Martha Taylor Sarno
It is both an honour and a pleasure to contribute the keynote paper to this

publication, marking the launch of “Connect”, the Communication Disability
Network, for this is a truly significant occasion in the history of aphasiology.
It is an important occasion especially for those of us who are part of that
history, because of our commitment to the well-being of those with aphasia
and their families.
My comments will contain many biases. None will be right or wrong,
correct or inaccurate. They simply reflect a perspective which has evolved
over a long career that has spanned major revisions in the social and healthcare
landscape, revisions that have also shaped the nature of aphasiology.
Furthermore, while my experience has been limited to the US, I believe
that, except for the details of differences in individual national policies and
legislation, I will be discussing issues that are true in all western medicine.
Communication disorders have been the consequence of injury and dis-
ease for as long as homo sapiens have had language, and the number of people
with aphasia has increased. This increase is due to the greater number of
survivors and longer life span, combined with modern-day technological
advances, as well as to an increase in the incidence of motor vehicle
accidents. Each year in the UK there are approximately 20,000 new cases
of aphasia (Parr, Byng, Gilpin, & Ireland, 1997), and about 100,000 new
cases in the United States (Damasio, 1992). In 1990 the National Institutes
of Health estimated that there was a population of one and a half million
Americans living with aphasia (National Institutes of Health, 1990). The
figures are particularly impressive when one considers that in the United
States the aphasia population is larger than the combined populations of
individuals with multiple sclerosis, muscular dystrophy, cerebral palsy, and
Parkinson’s disease, conditions that have historically had the benefit of
well-funded research and services, while aphasia has not.
Before the First World War, the aphasia literature contained only a few
reports of systematic attempts to “treat” people with aphasia (Broadbent,
1879; Mills, 1904). During and after the war, however, several aphasia re-
habilitation programmes were developed, especially in Germany (Franz, 1924;
Goldstein, 1942; Isserlin, 1929) but also in other parts of Europe (Poppelreuter,
20 Sarno
1915), the United States (Franz, 1924; Frazier & Ingham, 1920; Nielsen,
1936), and the UK (Butfield & Zangwill, 1946; Head, 1926). These pro-
grammes were designed for military personnel with aphasia secondary to
head injuries, which were usually gunshot wounds, incurred in combat. The
efficacy of these programmes, one of which followed 90–100 patients for
as long as 10 years, was well documented (Goldstein, 1942, 1948). They
inspired several landmark studies between the two world wars (Butfield &
Zangwill, 1946; Weisenberg & McBride, 1935).
During the Second World War specially designed hospital-based pro-
grammes for war veterans were established in the United States (Backus,
1945; Granich, 1947; Sheehan, 1946; Wepman, 1951), Germany (Goldstein,
1942, 1948), and Russia (Luria, 1948). All of these programmes reported
effective treatment of aphasia secondary to gunshot wounds. A renewed
interest in aphasia therapy emerged after the Second World War, extending
its scope to include the civilian population, which until then had been
ignored. Of course, unlike the young war veterans who had sustained head
trauma, civilians tended to be middle-aged or older-aged and had aphasia
secondary to strokes. Their potential for improvement, with or without
intervention, was considered poor beyond the first few days and weeks of
spontaneous, natural recovery.
This notion of the limited potential for recovery was underlined by the
fact that, in that period of history, the word “stroke” still carried the highly
charged meaning “stricken by God”. The stroke “condition” was so highly
stigmatized that in 1951 quotation marks surrounded the word “stroke” in a
book on the topic written by a leading aphasiologist (Wepman, 1951). Most
health professionals referred to the event as an apoplexy, a cerebrovascular
accident, or apoplectic attack. Until the term “stroke” was used in the media
to report the condition in public figures such as Sir Winston Churchill,
President Dwight Eisenhower, and Ambassador Joseph Kennedy, the term
was unacceptable. Strokes were then viewed as a natural and necessary stage
of the ageing process. The patient could generally count on an “at home”,
intergenerational, extended family to meet daily needs. After the Second
World War, social and demographic changes shaped the conditions that
facilitated the introduction of aphasia rehabilitation for civilians who had had
strokes, as an integral component of the healthcare system. The population
explosion created a greater need for services and the dramatic increase in the
size and prosperity of the middle class played a major role in these changes.
The demand for these services was also increased by the fact that more
people became aware of their existence and availability, through the expand-
ing media revolution.
Given these realities, it was inevitable that the field of speech-language
pathology experienced significant growth in the post-war period. This growth
was enhanced by the fact that a new board-certified specialty of medicine
was being established in the United States, at that time called “physical
medicine and rehabilitation”, designed primarily to deal with the problems
2. Historical perspectives, moral imperatives 21
of chronic disabling disorders like stroke. All of these factors played a part in
changing societal attitudes towards stroke and aphasia as well as towards
ageing, chronic disease, and human potential. The possibility of improving
the function of disabled individuals and thereby eliminating, or at least re-
ducing, their handicaps became a goal. The disability movement was about
to begin.
Aphasia rehabilitation is indebted to the field of rehabilitation medicine
for its philosophical foundation and its contemporary adoption of a func-
tional perspective for assessment, treatment goals, and outcomes. This medical
specialty introduced the notion of measuring a physically disabled indi-
vidual’s independence in the conduct of the activities of daily living, with a
functional frame of reference. This functional frame became the hallmark of
the specialty of rehabilitation medicine. Furthermore, it was rehabilitation
medicine that first conceived of the then radical idea that intervention for
the disabled requires a team of health professionals, and more to the point,
that the team should include a speech-language pathologist. Today we take
for granted both the value of a functional frame of reference and the collect-
ive expertise of a team of health professionals as fundamental to good care.
I had the good fortune to have been the first speech-language pathologist
who served as a member of a rehabilitation medicine team and therefore I
had the opportunity to develop the first aphasia rehabilitation programme
associated with the specialty of rehabilitation medicine. But it would be
30 years before the concept of functional communication would be of inter-
est to speech-language pathology.
In the 1950s there were virtually no aphasia rehabilitation services and only
1600 speech-language pathologist members of the American Speech Language
and Hearing Association in the United States. There are now more than
100,000 members, many of whom provide aphasia rehabilitation services.
Services are available in all types of facilities from nursing homes and private
practices to specialized, often hospital-based, formal aphasia programmes.
Since the establishment, over half a century ago, of dedicated programmes
for civilians with aphasia, we have experienced the introduction of and
exponential increase in the availability of not only treatment services but
also dedicated textbooks, journals, university courses, teaching aids, and
software for computer-assisted therapy. Support services and informational
materials are available for patients and caregivers. Professionals meet and
exchange information at meetings of the Academy of Aphasia, the Clinical
Aphasiology Conference, the International Aphasia Rehabilitation Congress,
the British Aphasiology Society, and the Dutch Aphasia Association, to name
but a few of the international bodies with a focus on aphasia. Furthermore,
aphasia advocacy organizations now exist in many of the developed nations
of the world.
In spite of the noted scope of improvements, there is yet to develop an
adequate realistic and relevant intervention model that goes beyond a func-
tional model. In fact, it may be that the contemporary context of activity, in
22 Sarno
the current high-tech, materialistic environment, has given rise to unrealistic
expectations and an underestimation or neglect of the interpersonal, social
impact of aphasia on the person and family.
Only those who experience aphasia know the full meaning of its effects on
all aspects of life, especially the many “webs” in our lives, the interpersonal
relationships that preserve and connect us to our world. Such webs depend
almost entirely on our ability to communicate. Aphasia not only disconnects
the person from the community but invariably alters the person’s identity
and sense of self. It is not at all surprising that the most often studied and
reported psychological sequela of aphasia is depression (Sarno, 1986, 1993,
1997).
We have learned from personal accounts that feelings of devastation,
alienation, vulnerability, powerlessness, and a loss of personhood are per-
vasive (Newborn, 1997; Raskin, 1992; Wulf, 1979). One person described
the experience as “Aphasia delivers a crippling blow to that part which our
culture proclaims to make man a thinking, bright human being: the com-
municative arts” (Wulf, 1979, p. 36). Many feel that they do not count any
more (Parr & Byng, 2000). Except in a very mild form, aphasia produces a
profoundly altered life. Clinicians know, all too well, that the psychosocial
consequences of aphasia persist for a very long period of time, often indefin-
itely. But in-depth studies using the methodologies of the social sciences,
designed to identify and assess the nature of personal suffering in aphasia,
have been limited (Parr & Byng, 2000). Biomedical interpretations of illness
have been criticized for leaving the experience of suffering out of assess-
ments of disease (Cassell, 1991; Kleinman, 1995).
It seems self-evident that a condition that strikes at the very heart of
personhood, our ability to communicate, calls for an intervention model that
accounts for everything we know about humans: personality, human nature,
emotional imperatives, adjustment factors, compensatory behaviours, and all
the other attributes of our species. A psychosocial model with focus on the
long term is required, taking into account the temporal factors which make
aphasia an ever-changing condition with different issues and influences at
different points in the recovery and adjustment continuum. The model needs
to be based on the idea that living with aphasia is a process of transition and
transformation. This incorporates the idea of an evolving self, with ample
opportunities for facilitating a transition from one life to another as the self
is reconstructed. The model must embrace the idea that aphasia recovery is
a dynamic, adaptive process that is constantly moving towards enhancing
interpersonal, functional communication. To this end it should not be
burdened with the constraints of artificially structured therapeutic contexts
requiring static responses. Such contexts cannot replace an authentic func-
tional experience.
That is not to say that the simulated, role-playing activities often used in
treatment serve no purpose at all when played out in the unnatural clinical
environment, but they cannot equal the real-life experience. These techniques,
when ultimately attempted in a real situation, may serve to improve a lack
of confidence or a sense of failure and hopelessness. But the person with
aphasia must also have an opportunity to deal with the grief that comes with
loss, feelings of powerlessness, and the many barriers people confront when
living with aphasia.
Of course, the intervention model must also incorporate some traditional
aphasia treatment which stresses addressing the impairment, but this should
not be allowed to dominate the focus of the person/therapist relationship, for
it ignores some of the most important needs. In fact, one might argue that
such an approach may serve to highlight the impairment rather than the value
of the individual as a person, member of a family, and a larger community.
This is not to undervalue the quantity, intensity, and superb quality of work
in linguistics and aphasia which has dominated the aphasiology literature in
recent decades. This work, however, has been accorded a high priority while
interest and funding in the psychosocial dimensions of aphasia have been
almost non-existent. Experience in the clinical management of people with
aphasia argues for a need for change of emphasis in the allocation of re-
sources and funding (see Chapter 4 by Jon Lyon for more on this issue).
In the past decade, a welcome break from traditional aphasia therapy
models has emerged in a small number of alternative approaches perhaps
best represented in the work of Kagan (1995, 1998), Lyon (1992, 1995,
1996, 1997), Simmons-Mackie (1993, 1998, 2000), Simmons-Mackie and
Damico (1996, 1997, 1999), Elman (1998, 1999), Holland (1991), and Pound,
Parr, Lindsay, and Woolf (2000). Many of these nontraditional approaches
include communication partners as fundamental to implementation. All are
based on a social, interactive, view of aphasia rehabilitation. Their objective is
to help restructure the person’s identity and sense of self, thereby enhancing
the possibility of social experience and interaction. In these approaches, the
person with aphasia is viewed as a part of a personal environment that is
embedded in a larger communal/societal context.
These creative contributions, which were designed to facilitate the most
natural and accessible communicative skills, have enriched our inventory of
techniques that facilitate the most natural, accessible communicative skills
possible with an emphasis on conversation as an interactive experience. A
new emphasis on the effectiveness of group treatment has also added to
a focus on aphasia as a social loss (Elman & Bernstein, 1999; Fawcus, 1992;
Kearns, 1986; Pound et al., 2000). By facilitating conversation these tech-
niques contribute to a person’s identity and sense of self.
No model of intervention would be complete or faithful to the realities of
aphasia without a component that accounts for the role of society. Society’s
ignorance and lack of awareness of aphasia has been seriously aggravated by
the lack of visibility of aphasia (Parr et al., 1997; Sarno, 1986). We almost
instinctively accommodate disabled individuals who use wheelchairs, crutches,
guide dogs, or other aids that help to make the world more accessible. The
deaf are immediately identified when they use manual signs. By contrast
24 Sarno
someone with aphasia cannot facilitate social interaction by informing a
stranger in a public place that aphasia is causing the communication diffi-
culty, since hardly anyone knows the term.
The invisibility of aphasia is a tremendous disadvantage in the public
environment; it interferes with the accommodation of the individual, and
reduces the probability that the public can learn about aphasia by random
exposure to the people who have it. Therefore, without some proactive
initiatives to change society’s understanding of and response to aphasia, the
continuing lack of public awareness clearly increases the social isolation of
those living with aphasia. Of equal concern is the prevailing public per-
ception that those who have impaired communication are either retarded
or mentally disturbed. Society’s intolerance of differentness and its perpetu-
ation of the stigmatization of the communication-disabled has also contri-
buted significantly to the difficulty of effectively educating the public.
One of the greatest barriers to the development and provision of relevant
and effective services in the history of aphasia rehabilitation has emerged in
the past decade (Davis, 2000; Frattali, 2000). Meaningful intervention has
become increasingly challenged and far more difficult to deliver in the face
of the drastic restructuring that has taken place in healthcare delivery, par-
ticularly in the United States. The scenario is not universal across regions,
cultures, or nations, but we have clearly entered an entirely new era of
health care, one that is driven by economic realities.
In the United States we are now engaged in practising aphasia rehabilita-
tion under the dictates of what is referred to as “managed care”—a term that
refers to financial arrangements which have been designed to control rising
health costs. There are many types of third-party payers including private
insurers, employer-related private insurance, state and federal insurance. As
a consequence, healthcare providers are no longer able to provide either the
type, frequency, or duration of services that in their judgement are appro-
priate to the particular individual needs of the person with aphasia.
Variations in service provision across the US are extreme, and depend
on the type of facility. Guidelines are often unclear and require seemingly
endless communication between provider and insurer for verification and
authorization before services are delivered. In general, insurers are less re-
strictive in the reimbursement of assessments than treatment. If treatment is
reimbursed it is more likely to be reimbursed while a patient is hospitalized
than later as an outpatient. In other words, insurers are highly unlikely to
reimburse individuals with aphasia for individual treatment sessions, and
many will only cover individual therapy and not group therapy. People with
aphasia are rarely, if ever, reimbursed for psychological or social support—
what has been called “maintenance”. As a consequence, unless a person with
aphasia is showing objective, documentable, evidence of communication
improvement, insurers generally deny reimbursement for continued inter-
vention. Third-party reimbursement practices are particularly restrictive for
outpatients in rehabilitation centres and hospitals. Furthermore, in the US
the new Prospective Payment System (PPS), which ties reimbursement to
diagnostic category, places significant limits on the number of days that a
disabled individual will be able to remain in an inpatient rehabilitation facil-
ity, further impairing the experience of people with stroke and aphasia.
The drastic changes that have taken place in the delivery of services to
people with aphasia in the United States have inhibited clinical practices
in ways that may have a permanent effect on our ability to render care that
is relevant and responsible. At this time the average length of stay in the
United States for a stroke patient in an acute hospital is 5 days rather than
the 2-week average stay of only a decade ago. The current acute hospital
stay is so short that there has been a marked increase in the establishment of
new home healthcare and skilled nursing facilities (Frattali, 2000). In the
current environment, those fortunate enough to be referred to a rehabilita-
tion hospital will remain there for an average of 19 days, rather than the
average rehabilitation inpatient stay that, not long ago, exceeded 3 months.
Once discharged, insurance coverage for outpatient rehabilitation services
averages from four to ten sessions rather than the 6 to 9 months provided
only a decade ago. In addition to the devastating reductions in covered
rehabilitation services, fewer patients are being referred for rehabilitation
services on discharge from the acute hospital. At the present time there is
little evidence that the managed care situation will improve for those with
aphasia or other chronic conditions.
Our mandate is clear. The current healthcare environment requires a re-
evaluation of the roles of people providing rehabilitation services to people
with aphasia, and what we can achieve with them, and an exploration of
alternative means for providing services. The existing issues and barriers
challenge our most creative and inspired thinking if we are to restructure the
context of aphasia rehabilitation.
Among the most compelling issues that need to be addressed are:
• limited access to rehabilitation services stemming from economic

realities;
• adherence to a medical model of recovery and rehabilitation;
• the perception of aphasia rehabilitation as almost exclusively a process
of repairing language;
• an uninformed and intolerant society which has stigmatized the
condition;
• the lack of specialized facilities that provide opportunities for social
interaction and peer support as a component of a comprehensive
treatment, education, and research programme.
Many of the issues we face stem from aphasiology’s persistence in adher-

ing to a medical model which focuses our attention on pathology rather than
handicap or disability. When pathology is the priority of concern, the goal is
for a return to a pre-aphasia state, a goal that is not only unrealistic but
26 Sarno
counterproductive if it remains an intervention target (see Chapter 4 by Jon
Lyon for further discussion of this assumption). The medical model has
also helped to foster the idea that the long-term issues of living with aphasia
can best be solved in a healthcare environment. Yet most of the world of
medicine has abandoned long-term quality of life concerns as it increases
its dependence on technologically based procedures and practices, in our
cure-oriented western society. This has served to further “medicalize” the
management of patients beyond the acute stage.
The adoption of a social model for aphasia rehabilitation in the post acute
phase is long overdue and has already been addressed by some aphasiologists.
However, the abandonment of a medical model calls for a major shift in the
underlying bases of the training of aphasia clinicians. If we adopt a social
model, the academic curriculum will need to incorporate a far greater em-
phasis on the social sciences, sociology, and psychology than it does at the
moment. It will perhaps even include some supervised clinical practice in
counselling. A social model calls for a revision of intervention practices away
from the traditional focus on static, non-interactive techniques intended to
repair the language deficits manifest in aphasia, to approaches that acknow-
ledge the social, interactive basis of human relationships. A high-priority
therapeutic goal is living with aphasia in the context of family and com-
munity. Insisting on maintaining relevance to real-life activity in all inter-
vention techniques helps to ensure that the purpose is viewed as primarily
psychosocial. Unfortunately, many therapists see the social model as relevant
only as the patient is preparing for the termination of treatment.
A model that provides a useful perspective of aphasia rehabilitation, called
the “psychosocial transition model” focuses on long-term outcomes and
social support and the shifting of attention towards issues of self-definition
and social role identity (Glass & Maddox, 1992). These authors refer to the
concept of a “life space” representing the totality of interaction for each
individual. The psychosocial transition model calls attention to the import-
ance of a temporal dimension in the coping process—that is, it acknow-
ledges that many different phases of adaptation take place at different points
in the recovery continuum, beginning with the sudden changes brought on
by aphasia, the immediate alteration of life space, and adaptation, which
includes a sense of mastery despite deficits.
Models in which the primary focus is on repairing the impaired language
in aphasia run the risk of overlooking and, in fact, undermining the import-
ance of the conversational interaction that dominates our relationships and,
therefore, the meaningfulness of our lives. By providing alternative means of
interaction through access to social activity, and a focus on communicative
strategies or other activities, those with aphasia are helped to redefine them-
selves and resume a role in the family and community.
There is an urgent need to make aphasia a more “visible” disability and
develop a social environment in which people with aphasia are not
marginalized or devalued because they may not have returned to gainful
employment. In the current climate, the challenge to change society’s view
of aphasia will require a systematic and aggressive programme of public
education at all levels. All avenues of education need to be utilized.
A broad-spectrum initiative that reaches out at the local, regional, and
national level is needed, such as media exposure, public service announce-
ments, lectures for public attendance in the community, exposure to per-
sonal accounts of individuals with aphasia and their caregivers, videos and
films designed to educate the public about life with aphasia. All need to be
systematically utilized to promote understanding and engagement in the
public sphere. Aphasia associations around the world are involved in speak-
ing for the aphasia community through public education. But it will take a
more organized approach to make a difference. This will require funding,
which is at present not generally available to those who could initiate and
contribute to such a programme. This initiative can only be realized in a
community of individuals who appreciate the socially disabling nature of the
condition and the significant part that an enlightened society can play in
remedying an unacceptable situation—by helping to create and/or foster the
social networks that people with aphasia need if they are to be members of a
society/community and the opportunities they need for work, whether paid
or volunteer. An educated public will insist on social policy changes that
enhance the possibilities of people with aphasia being accepted as members
of the community, thereby bringing greater visibility to the disability.
We should also utilize community resources that are already in place
but have not yet been used in the service of the aphasia community. Adult
education, volunteer programmes, senior citizen groups, and academic
programmes could be accessed for the benefit of people with aphasia in ways
not yet explored. Utilizing community resources also helps to further public
education concerning aphasia, and transfers the effort from medical environ-
ment to the community. Civic groups and family foundations can be soli-
cited to fund such programmes.
Little has been said in the aphasia literature about the necessity for or
creative possibilities of accommodating people with aphasia within the com-
munity. Our dependence on telecommunication networks for everything from
purchasing groceries, gifts, and airline tickets online; the corresponding need
to respond to elaborate menus on voice-message systems requiring speedy
and accurate auditory comprehension; and the present-day need to utilize
numerical response language when interfacing with telephone message
systems—all these are totally unforgiving to the individual with aphasia. We
have a responsibility and an obligation to develop initiatives that will address
the potential for providing accommodations for those with aphasia to access
our everyday information systems, albeit through unorthodox means. As
with other disabilities, people with aphasia should also have access to aides
who act as surrogate communicators.
“Connect”, the Communication Disability Network, both as a concept
and a reality, represents an extraordinary effort to develop a model centre
28 Sarno
for aphasia unique in the history of aphasia rehabilitation. The Connect
initiative reflects our very best thinking and understanding of the impact of
aphasia on the person, family, and community. Its existence highlights the
need to consider the long-term effects of aphasia in psychosocial domains
requiring long-term, sometimes lifetime support, with education and social
opportunity. As part of an ongoing effort with plans for expansion to other
regions of the UK, the scheme incorporates a community-centred approach
to the larger UK aphasia community which should have a significant effect
on the ways in which aphasia intervention and professional training evolve in
programmes, new and old, around the world. The Connect programme will
become the benchmark for clinical aphasiology practice.
I have always been impressed with the richness and meaningfulness that
the experience of working in aphasia rehabilitation has brought to my own
personal and professional growth and fulfilment. It has highlighted my
respect for individual differences and the value and vulnerability of our
humanness. The experience continues to introduce a fresh understanding of
what it is to be a person ( Jennings, 2001) and reaffirms the complexity and
breadth of our communicative interactions.
What I have said in this chapter suggests the need for a somewhat different
course of development in aphasia rehabilitation, which will need thoughtful,
supportive engagement by clinical aphasiologists if we are to make a difference.
Our efforts must be ever mindful of the transitional nature of aphasia, which
varies and changes in response to the time under consideration—that is, the
temporal layers that characterize life with aphasia which vary in their evolution
from person to person. I believe that each of us has a unique relationship to
our communication behaviour—each comprising a universe of its own. The
effective aphasia therapist is one who negotiates the means to enter that
universe with the person experiencing aphasia.
Much has been said recently about quality of life and the person with
aphasia. Quality of life may tell us something about the experience, but not
the “moral worth of humanness, or it may tell us something about becoming
(more fully) human, but never about the value of being human” ( Jennings,
1999, p. 103). The literature contains virtually nothing about the compelling
ethical-moral issues that are inherent in a discussion about people with
aphasia, who are perceived as lacking in value or personhood. Human
communication is a foundation for human freedom, for human agency and
the ability to act voluntarily (Horner-Catt, 1999). Those who work with the
communication-disabled are members of a moral community seeking to
empower and restore individuals to a meaningful life experience. We have
a duty and an ethical responsibility to sustain each individual’s personhood
as much as possible by maintaining, sustaining, and creating relationships,
connections, and commitments with the person.
It is one thing to give care and protection out of a sense of pity, or

charity, or professional duty, or even love; it is another to maintain
relationship and connection with the other for as long as possible out of
a sense of the moral importance of that connection per se.
( Jennings, 2001)
I am grateful to Jennings (1993, 2001) who reminds us of our universal

vulnerability and frailty and the need to keep before us the moral imperative
of connecting with persons with aphasia, whose status and moral personhood
has been traumatized by medical events beyond their control. They suffer a
private injustice to which we have a moral obligation to respond, with our
best efforts to restore their membership in the human community.
ACKNOWLEDGEMENT
Preparation of this chapter was supported in part by a grant to the author

from the Jacob & Valeria Langeloth Foundation.
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32 Pound
3 Dare to be different:
The person and
the practice
Carole Pound
Neurology is largely a veterinary business—it deals almost exclusively with

what can be measured and tested; hardly at all with the inner experience, the
inner structure, the subjectivity of the subject. It prides itself on managing
to exclude these, on being wholly objective science, on being wholly con-
cerned (like physics) with the public, the visible, the demonstrable. No
personal terms are allowed in neurology . . . we do not have any “neurology”
of identity.
(Sacks, 1991, p. 189)
In A Leg to Stand On (1991) Oliver Sacks gives a masterly account of his

experience as doctor turned patient. My aim in this chapter is to describe
my own account of being both a therapist and patient—these separate but
mysteriously converging paths. I am attempting to put into words a strangely
elusive reality, because I am convinced that the very inability to articulate
the contradictions of disability and identity within rehabilitation is perhaps
the force that drives professionals and patients to the safe haven of science
and objectivity. The resulting silence allows little place for dialogue and
negotiation, thereby reinforcing the powerful voice of medicine to which
Sacks alludes.
Besides the reliance on objectivity, is a reliance on the notion of cure. The
Siren’s song of restitution or cure has many seductive properties to both
patient and practitioner, luring us to the promise of return to health, whole-
ness, and therefore re-engagement with the life that we knew. The recog-
nition that one or both parties, clinician and patient, work from this false
promise of cure can be easily suppressed. The alternative path, that of learn-
ing to live with disability, value difference, and engage with a changed iden-
tity, is a longer, more uncertain journey. This second path is beset with
problems of articulating inner experience, making connections between
impairments and identities, and, as therapists, listening to painful struggles
of others—struggles that we may lack the strength to hear or the power to
cure. However, my hope is that by retracing some of my own faltering steps
as patient and practitioner I might enable therapists to enter into more
3. The person and the practice 33
explicit dialogue with themselves, their colleagues, and their clients about
some of the navigation points in learning to live with difference.
In this chapter, then, I will attempt to explore the complex interrelation-
ship of therapy, disability, and change. In particular I will discuss the import-
ance of identity and expertise in living with a disability. In doing so I will
draw on ideas from disability studies and from narrative approaches to
illness. In an unusual departure from my more comfortable approach to
talking about therapy I will also draw heavily on my personal experience of
facing and learning to live with sudden acquired disability. I will try to relate
how personal experiences of and reflections on participating in therapy as
patient, therapist, and bewildered traveller have shaped many aspects of the
therapy service that my colleagues and I aspire to offer in the organization in
which we work—Connect, the Communication Disability Network. I will
end with examples of some of the principles and processes that underpin our
culture and practice at Connect. I offer these ideas in the hope that they will
provide discussion points for those of us who struggle daily to understand
the tantalizing paradoxes of the “neurology of identity”.
THE CONTEXT
Now for my personal interaction with disability. This is not an easy story to
write about. How much should I expose of my personal thoughts, struggles,
beliefs, to an audience with whom I interact as a “professional” not a
“patient”? Many therapists I know work long and hard to “hear the story” of
the clients they work with, so an inside experience is unlikely to surprise
or offend you—but this is my story and I am struggling to interact with
you simultaneously as Carole the speech and language therapist and Carole
the “patient”, the person on the other side of the rehabilitation divide. Two
selves so clearly related yet so carefully circumscribed and kept distinct.
It puzzles me now how little I reflected on the unnatural disengagement
of these two protagonists. Clearly as therapists we need to acknowledge
and maintain professional boundaries. But how much does the distancing of
therapist aims, action, and experience from client aims, actions, and experi-
ence interfere with our mutual understanding of and communication about
ourselves as we interact in therapy?
So what happened to cause me to experience chronic disability first-hand
and to want to become a therapist? Thoughts of therapy and disability could
not have been further from my mind as I graduated from university and set
off hopefully to life as a tennis coach in the south of France. I looked
forward to suntans, glamour, freedom, quite apart from fine wine and pas-
sionate liaisons on the Cote d’Azur. How ironic that just 2 days before the
spinal injury that left my right arm an immobile shadow of its former self,
I was attending a coaching course where we were made to experience inco-
ordination and incompetence by trying to play left-handed.
34 Pound
As a consequence of catapulting from my moped into a wall, I lost my
supermodel looks (though not my imagination), my arm stopped working,
and the severed nerves introduced me to nerve pain, my daily companion
since that time. My tennis coaching career over, and my interest in rehabil-
itation stimulated, several years later I happily settled on a different career
as a speech and language therapist.
Why am I telling you this? I sense a nagging need to justify my apparent
“off piste” narrative of “personal tragedy”. My professional voice warning
me not to expose too much of my self, not to risk your perceptions as a—
a what; “tragic victim”, unprofessional self-discloser, “poorly adjusted”
disabled person, a person who courageously got her life back together,
superwoman? Perhaps this streak of self-consciousness illustrates nothing
more than my personal fears. Or perhaps my well-formed worry fantasies
represent an internalization of those well-recognized responses to disability
within western civilization, responses that focus on loss, tragedy, and
separateness.
PATHWAYS THROUGH THERAPY
My early career as a patient was dominated by pain, confusion, and a deter-

mined quest to “get better”. This meant a focused pursuit of the best
surgery, the best physiotherapy, and even the best prosthetic device which
might offer some kind of bizarre dysfunctional movement to a patently non-
functioning arm. Time with therapists was precious—not just because it
gave access to skills and expertise that would surely improve movement, but
because it provided a rare circumscribed space to talk about an impairment,
pain, which dominated my life but which I neither understood nor felt able
to talk about to others in my everyday life. A hidden disability that had no
name worthy of it—“pain”, such a bland, reductionist term with no associ-
ation to the surreal and utterly pervasive sensory, affective, and emotional
experience I was living with.
Only recently have I made more explicit connections between pain and
aphasia. Both seem steeped in mystery, myth, and paradox, the intense physical
and psychic reality of both and yet the way their intangible nature defies
vocabulary, description, and meaningful conversation. Physiologically the
reality is located at the point of lesion, yet psychologically it has a new and
far more invasive geography, reverberating through one’s whole self and
sense of self—the hidden, invisible nature of pain and aphasia, and their
propensity for being misunderstood by others. For example, others easily
interpret the difficulty of dealing with pain as psychological weakness, and
the difficulty of controlling language as intellectual incompetence. And finally
there is a parallel between the sense of expectation and ultimate disappoint-
ment experienced by those who live with pain and aphasia, that modern
medicine can promise so much yet deliver so little.
The illusion of medical omnipotence was fostered in my case by early
experiences of rerouting nerves and muscles in my arm. I will be forever
grateful for those miraculous interventions. Perhaps these small miracles
equate with the subtle but reassuring shifts in communication that well-
directed language therapy can deliver. But, these changes not withstanding,
I would also strongly agree with Wendell (1996, p. 137) who warns, “Know-
ledge of how to live with the suffering and limitation it cannot cure remains
on the margins of medicine and medicine’s cognitive and social author-
ity helps to perpetuate cultural ignorance about disability and incurable
illness.”
UNDERSTANDING THE NATURE OF RECOVERY
Understanding the nature of a complex impairment took many years of

asking questions, scouring medical books, and keeping an eye out for
medical advances in the management of brachial plexus lesions and chronic
pain. One of the most confusing aspects of these early years of being
disabled was the concept of “coping” and adjustment. By this time I was
fully engaged in my speech and language therapy training, and discovering
amongst other things the psychology of grieving and the language of rehab-
ilitation. If I personally was still keen to pursue more medical interventions
and still experiencing wild mood swings, had I really reached a stage of
acknowledgement and acceptance of my own “loss”? If not, was I secretly
signing up to the club of “pathological” grievers—those tragic figures
who were stuck in a dark, Dantesque, and hope-free limbo of anger and
depression? To the external world I may have played a rather convincing
part of “coping well”, but my body and mind frequently screamed a different
and silent story.
Other sources of confusion were the frequent appearances of newspaper
articles and television programmes where the latest techniques in nerve re-
generation experiments were proudly paraded by medical experts. Encour-
agement to pursue miracle cures and read up on bionic arms were not in
short supply. This direction came not only from well-meaning family and
friends but via regular television, radio, and newspaper accounts. The story
in the UK of PC Olds, a policeman crippled by a criminal’s bullet 20 years
ago and bravely trying to walk again with electric implants, captured the
nation’s interest. As did his “understandable” suicide when the miracle did
not materialize. Advances in science and technology give well-publicized
hope to many spinally injured people today and continue simultaneously to
reinforce the omnipotence of science and, implicitly, the inability of the
human spirit to cope with living differently. This open, public discussion of
hope and cure was, for me, in complete contrast to the powerful and solitary
debate that raged in my head and in my emotions as I incompetently man-
aged the real “adjustment” process. Role models within rehabilitation and
36 Pound
the media were those who worked hard and battled to overcome the odds,
not those who struggled with anger, challenged the power of medicine,
demonstrated pride and confidence in self-management techniques.
Initially, as a therapist, I felt largely untroubled by these contradictions.
My job was to help patients understand their condition, improve their speech
and language as much as neurological damage allowed, and somehow sup-
port them to “come to terms” with their changed lives (which of course I
could only glimpse from my therapy rooms in the hospital or rehabilitation
unit). It was troubling that rehabilitation rarely spanned a period adequate to
reach anything approaching the end point on these pathways. Looking back,
I cringe at some of my clumsy attempts to speed realistic adjustments to
limitations on the part of patients and families. I also, retrospectively, ques-
tion decisions about the timing and allocation of time to different parts of
the rehabilitation process. How little option I gave clients in how they
divided their precious therapy time, and how unclear I was in setting out the
different components of therapy. For example, it was not difficult for me to
listen to language errors and tales of determination. But to listen to the
repeated stories of chaos and confusion and to develop therapeutic inter-
ventions appropriate to learning to live with difference—these offered thera-
peutic challenges of a quite different dimension. Rare newspaper reports
and television programmes about language impairment may have raised my
therapist hackles, as they wildly misrepresented the reality and possibilities
of therapy, but I saw them as isolated irritations, rather than as an extension
of the medicalization of disability that each of my work settings supported.
I felt, as a therapist, very comfortable within the culture of rehabilitation,
and for many years, in spite of my own experiences of disability, quite unable
to challenge hard-won roles, expertise, and status as a therapist.
NEW APPROACHES TO DISABILITY
It was therefore a rude awakening to me as a therapist to discover writings

from the disability movement in the early 1990s. Redefining disability and
the primary source of disability as located in the social environment led
to convincing challenges to the supremacy of medical and philanthropic
models of disability. These disabled people quite justifiably were challenging
my power and status in the “disability industry” and articulating stories of
oppression and exclusion. This was not what I heard in media reports, or
indeed from many clients and relatives new to a life of disability. Yet such
themes and alternative stories had a startling clarity and connection with
some of my experiences as a disabled person and as carer of a family member
with a long-term disability. Hearing alternative stories of living with disabil-
ity was both a revelation and liberation to me as a disabled person.
As a therapist, there was a different but also welcome engagement with
a new perspective on disability. Barriers in terms of attitudes, access to
information, and accessible communication environments did indeed seem
a critical part of learning to live with disability for people with aphasia.
Instead of simplistic concepts of “coming to terms” and adjustment, these
new disability discourses spoke of personal and social struggles. Personal
and political accounts of disability led naturally, in some cases, to a genuine
celebration of difference, a sense of unabashed affirmation which I noticed
reverberated with the voices of some people with disabilities who came
through our rehabilitation services—people who were variously described
as “poorly adjusted”, “lacking in insight”, or “exceptional” in the way they
had “accepted” their illness.
But as a therapist, reading this material also produced a profound dis-
comfort. As I explored the literature further I felt discomfort at the angry
voice of the oppressed and dispossessed (disabled people) railing against
their powerful oppressor (the non-disabled rehabilitation workers). No one
can deny the reality of the power divide between therapist and patient
(see, for example, French, 1994; Oliver, 1996) but relocating the source
of disablement as within the social and medical environment is a stern
challenge to a therapist’s hard-won status and accoutrements of power.
Having analyzed and conquered my initial defensiveness, I evaluated the
“social model of disability” literature with a more measured eye. Some key
concerns remained. Amongst them was a worry that some of these com-
mentators were employing directness and simplicity for political expediency,
to swing the pendulum of power to the other extreme. Spinally injured
wheelchair users, with their energy and language intact, may indeed be able
to participate on equal terms in an environment adapted for wheelchair
users. But how do people with language and cognitive disabilities gain equal
access to work, meetings, positions of power? And how can environments be
modified to allow equal participation for people with impairments such as
pain and fatigue? Other than some feminist discussions of the sociology of
the impaired body (Morris, 1996), the disconnection between impairment
and disability seemed radically oversimplified. Nevertheless, there was some-
thing fresh, raw, and appealing about these disability discourses, and at last a
dialogue about difference that went beyond the focus on loss and adjustment.
DEVELOPING NEW IDENTITIES: CONTROL,

TRANSCENDENCE, AND SOMETHING IN BETWEEN
It is not uncommon for people within the disability movement to talk about
acquiring disability as the best thing that ever happened to them. This is a
challenging concept for non-disabled people. But it also challenges many
people struggling to live with chronic illness and disability. How many dis-
abled people, if offered a cure for their disability, would take it without
hesitation? This is not to negate the ease with which many people with
disabilities identify clear gains and positive development of aspects of their
38 Pound
identity intricately bound up with their experience of disability. But re-
construing one’s sense of self and self-identity to incorporate the physical,
emotional, and lifestyle changes associated with a new state of (disabled)
being is not an easy transition.
Whilst the social model of disability extols the virtues of the positive
disabled identity, an affirmation of what it is to be disabled (Swain & French,
2000), it is less explicit about how such a state might be achieved. This is
particularly the case for those whose communication, lifestyle, and person-
hood has taken a battering from the impact of stroke. These individuals
are grappling with profound changes without language and within a culture
that regards and treats disability as personal tragedy.
From my own experience I can identify some clear milestones in develop-
ing a more positive disabled identity. This was a long and rocky road, and
only the glorious tool of hindsight allows me to see some coherent themes
emerging. The themes have to do with my perception of lack of support, of
groping in the dark. Gaining some sense of control over my condition came
through accessing a body of information on my condition, not just from
doctors but from frequent “checking out” interactions with therapists. Check-
ing out why I was experiencing this or that twinge, checking out my inter-
pretation of new information with someone better versed in neurophysiology,
trying out my still hesitant ability to articulate bodily and psychological
experiences of my disability with a knowing listener, seeking reassurance
that my latest self-management technique was sensible and valid. This was
another reason why the time and space with therapists felt so precious to
me. I supported this by reading and re-reading academic reports in the
books and journals of medical libraries, or case notes and letters written
about my condition. Perhaps this skilling up meant that over time I was able
to read media reports of scientific advances with interest but also with a
more measured and more critical eye.
Another form of control and mastery came from the increasing knowledge
that I could live with the unpredictability and uncertainty of my condition.
This might be dependent in part on pacing myself or using techniques to
help me sleep. But it was also about replacing the fear and foreboding of
how I would handle a future problematic situation with the reality of getting
through the bad days in a rather ordinary and everyday way. Living with
something that never leaves you can easily lead to being absorbed by your
condition. The high-tech dramas of surgery, hospital appointments, and
new treatments take on a status and significance that more mundane every-
day strategies lack. Taking it easy, having a hot bath, swigging a gin and
tonic may seem little match for more costly high-profile medical interven-
tions administered by scientific experts, but to date it is these everyday
supports that offer most significant forms of relief, even if they do remain
both transitory and incomplete.
Another turning point was learning that pleasure and pain are neither
mutually exclusive, nor in mortal combat with one another. I came to realize
that expending energy on having fun and living life was rather more import-
ant than preserving all one’s energy and motivation for doing therapy and
chasing dreams of cure. I was able to get lost in the flow. I was able to reach
some kind of transcendence through concentration and engagement in
activity. This was not the tangible cure or change I had hoped for. However
its therapeutic power to remove me from absorption in illness offered a
magical escape from a focus on pain, difficulty, and disablement. I would
compare this sense of losing consciousness of pain and the self in engage-
ment in the moment as akin to Lyon’s discussion of the person with
aphasia losing consciousness of their aphasia in the “flow” of engagement
with conversation or other pleasurable activity (Lyon et al. 1997; see also
Csikzentimihalyi, 1990).
Techniques in self-management are widely acknowledged as powerful
methods of taking control for people living with chronic illness and disabil-
ity. In many intractable conditions such as arthritis and pain management
there is now sound evidence that such techniques are the key contributor
to change in one’s sense of well-being (e.g., Barlow, Williams, & Wright,
1999; Lorig, Mazonson, & Holman, 1993). But while the acknowledgement
of patient expertise and self-management techniques rightly form the cor-
nerstone of government initiatives to shift power from the professional to
the patient (Department of Health, 2001) we should not be naive in consid-
ering the hurdles for both professionals and patients in locating and valuing
expertise. For me, another key milestone in acknowledging my strength and
experience as a disabled person was the recognition that through my experi-
ence I had acquired an expertise that my doctors and therapists lacked, and
that I really could make a contribution. However for many years the uncer-
tainty with which I experienced each day was no match for the clarity and
certainty of the medical perspective, and consequently I afforded my grow-
ing expertise little value or status.
It is interesting now to reflect on how telling one’s story to others—to
patients, to therapists, to medical students—can be a moment of affirma-
tion or diminishment depending on the dynamics of the situation. So being
prodded and poked in front of medical students, having one’s story hijacked
and reinterpreted by the medical expert (as on the occasion where an emin-
ent consultant instructed his visitors how “these people often feel utterly
hopeless”), can merely serve to reinforce the knowledge and power of the
expert doctor/therapist (and the utter hopelessness of the patient!).
An opportunity to contribute a genuine lived experience is different. On
several occasions I was encouraged by medical practitioners who involved
me through thoughtful listening and careful questioning. In many cases also,
an explicit statement from the therapist or doctor that they cannot really be
close to your everyday experience was an important inroad to sharing some
understanding of my condition. This quite simple technique endowed me
with power and offered me an avenue for exploring different ways forward
with a respected partner in my therapy.
40 Pound
Finally, this development of a sense of expertise and control seemed
located in the process of recognizing true expertise in other people who
live productively, thoughtfully, and expertly with their own disabilities. In
the early days after my accident I failed totally to recognize this expertise,
believing all the answers must surely lie with the people in white coats and
uniforms. No one with “patient” status approached the expert role for me—
how could they, when they hadn’t been able to “overcome” whatever dis-
ability they had? Yet perhaps it was exactly that wider view on expertise,
knowledge, and its integration with real life (outside the hospital ward) that
might have accelerated my increasing confidence in my coping techniques.
THE DYNAMICS OF THERAPY
Do these themes have any resonances for people with aphasia struggling to
construct a more robust disabled identity? I believe a range of similar themes
and transitions emerge from interviews with people living with aphasia (Parr,
Byng, Gilpin, & Ireland, 1997; Simpson & Pound, 2001). Here, I will focus
on just a few of the changes and challenges to my practice as an aphasia
therapist resulting from these insights on power, control, and expertise.
1 Frequently and explicitly acknowledge the person’s expertise in their

condition. In some ways this is the experiential competence parallel of
the “I know you know” catchphrase of the Aphasia Institute in Toronto,
where conversation partners are trained to explicitly acknowledge the
aphasic person’s communicative competence (see, for example, Kagan,
1998).
2 Appreciate the skills involved in, and the value and impact of authentic,
responsive listening. This may be a part of group or individual therapy
or it may be the tool of an in-depth interview. Whilst many clients may
not give this particular experience of therapy the same status as direct
exercises on language, speech, or writing, it is likely to be equally or
more beneficial. Be sure to record some of the content and process of
this listening “therapy” to provide the clients’ thoughts and reflections
back to them with the same tangibility as is achieved with language,
speech, or writing exercises.
3 Think about how to provide access to opportunities for people to tell
their own stories and hear the stories of others (Barrow, 2000; Pound,
1999). Many people dismiss groups and sharing of experiences as in-
effectual because they lack the focus and clarity of one-to-one exercises.
The challenge of sharing stories of expertise is to provide a context that
pays attention to structure, clarity, and process. This means, as with any
good therapy, giving careful thought to the therapeutic aims of the
group, and to the preparation of environment, materials, and resources
which will allow these aims to be met. What environmental conditions
are required? How will story telling and listening be supported, clari-
fied, and recorded? What skills does the group facilitator require to
support the process of focused group-work? How will individuals in the
group be communicatively supported? What are the opportunities out-
side the therapy room for sharing experiences and expertise?
4 Allow your therapist expertise to interact with but not overpower the
expertise of the person living with aphasia. Offer experiences and insights
but do not make assumptions that they fit this particular individual.
Offer theoretical and academic insights but make them sufficiently
accessible so that people can challenge them. Share your own views but
be aware that these always risk being received as more important than
the views of “patients”.
5 Be genuinely prepared to change your view on an issue in response to
the views of service users. This does not mean that service users’ views
should go unchallenged. Provide a context and a culture where your
views can also be genuinely challenged.
NARRATIVES OF ILLNESS AND DISABILITY
Listening to, bearing witness to, and interacting with the stories and expert-
ise of the patient or wounded storyteller, is one of the therapeutic principles
of narrative-based practice (Greenhalgh & Hurwitz, 1998). This rapidly
growing literature is likely to offer an easier, less challenging approach to
redistributing power and expertise than the politics of disability. Narratives
of illness ( Frank, 1995; Kleinman, 1988) provide a framework for listening
to the stories of patients and practitioners in order to better understand and
navigate the experience of illness.
Arthur Frank (1995) describes the person suddenly confronted with ill-
ness or disability as the “wounded storyteller”. It is through telling stories,
recounting illness narratives, and integrating these into life narratives that a
person might best navigate the biographical discontinuity, the disorientating
storm, that sudden illness whips up.
Frank identifies three overarching narratives—chaos, restitution, and
quest—which together underscore the plot and storylines of living with
chronic disability. The chaos narrative tells of the body being swept away
with no sense of control or possibility of return to order. Events lack
sequence or causality, and the person is buffeted by confusion and experi-
ences beyond their control. The restitution narrative uses the storyline of
“Yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again”.
As in television commercials about the restorative function of a particular
medication, this storyline has both a sense of predictability (“tomorrow I’ll
be healthy again and back to normal”) and a faith in some external agent
42 Pound
(doctor, medication, therapist) bringing about the restoration to health. In
this way the restitution narrative allows for the self to be dissociated from
the body (“I’m fine but my body needs fixing”) and for the expertise of
others to be the critical agent of change. Within the quest narrative, illness
is viewed as a journey in which the traveller seeks alternative ways of under-
standing and being ill. The teller of quest stories accepts the challenge of
illness and seeks to use it in some way. Illness becomes an opening for a new
way of living and the teller reclaims a sense of agency that is absent for the
authors of tales of chaos and restitution.
Whilst Frank does not suggest that people who acquire chronic disabil-
ities pass neatly through these different narratives in a linear progression to
the nirvana of “acceptance” it is tempting to equate the dominating themes
to phases of illness biography. The chaos and confusion of the early days
where all is lost and in turmoil. The determination and motivation to re-
cover, typically through the expertise of doctors and therapists as restitution
narratives predominate. And finally, for some, the peace or new direction of
the quest narrative, where life again has a purpose as does the disability/
illness one is living with.
COMPETING NARRATIVES AND SIMULTANEOUS

NARRATIVES
Reflecting on my own illness navigation, I can remember vividly the chaos

of the early months and years as all seemed lost—career, confidence, future
hopes and dreams. As the twitch of some movement returned there was a
shift to the “work hard, get more surgery, get another degree of elbow
flexion” perspective. The focus of getting more recovery, more movement,
more hope from biomedical interventions was a strong and seductive
songsheet to sing from. The fact that this narrative interacted minimally (if
at all) with my everyday life—I still could not brush my teeth, comb my
hair, have any relief from the routine of pain or the sense that my life was
not whole—did nothing to lessen its grasp. The messages around me also
nurtured this narrative—not just the reports of bionic arms and medical
discoveries, but also inevitably the thrust of my speech therapy training,
where the individual model of disability reigned supreme.
Reflecting back on my therapy practice at this time, I feel the powerful
grip of restitution. Entry through the gates of Disability World as a cus-
tomer or provider seemed to set up a chain reaction of cosseting and protec-
tion through the (hopefully shortlived) storm of chaos. But then, moving
deeper inside this new world, the cementing of patient and practitioner
in the complicity of restitution would be an exhilarating, mysterious ride
together. The requests I most heard were to “make my speech better”
and “restore me to normal” not to “help me lead a new life as a disabled
person”. How much were these messages filtered through my own illness
and practitioner narrative? How much were they the consequence of a lack
of imagination on the part of patient and therapist? How much were they
mediated by the default vocabulary of a person exploring a new world
without access to that new world’s language? But even when I tried my
best to navigate a new story with a patient, I wonder how much faith I had
that a rewarding new direction could be found? My training and ideas for
therapy were driven largely by a focus on changing the impairment, not
supporting the journey, and I lacked confidence in my skills to travel new
and uncertain roads.
THE SEDUCTION OF THE RESTITUTION NARRATIVE
What were the turning points for me in escaping the grip of restitution? As
both patient and practitioner it was the realization that living with disability
did not mean having to be strong and “courageous” all the time—the
discovery that admitting to feeling crap was not a signal that I had failed
to adjust. I finally realized that I could still hope for improved pain relief
without expending disproportionate energy pursuing dreams of cure. Unlike
the powerful public narratives of restitution where direct, emotive language
underscores the heroic battles and courageous struggles of superheroes, it
was the realization that my everyday struggles were, like those of many
others, full of monotony, but also of uncertainty and unpredictability. Sur-
viving those everyday struggles is perhaps just as “superhuman”, but is not
recognized as such.
I suspect that many other practitioners feel, as I do, the stomach turning
cringe of failure when a client eagerly tells of a newspaper or television
report about the latest cure for brains. Those clients, who seem to be
moving forward with their life, taking control and integrating their past and
new disabled self, are suddenly catapulted into new expectations of restored
function by the latest stem cell research, or media neuroscience. The
seduction of a new cure can feel so at odds with the matter of getting on
with your life as a disabled person. The imposition of the importance of
cure, and the implication that a person cannot be whole or good enough
without a cure is in direct conflict with the self-respect of people with
disabilities (Wendell, 1996).
Perhaps this is exactly the tension it is easy to feel when working on
improving someone’s language ability while simultaneously working with
them to learn to live with their ongoing limitations. How easy it is to urge a
client to strive for more words, longer sentences, greater accuracy of word
production. Careful selection of personally relevant vocabulary items and
stimuli can support both client and therapist in linking this work to real life
and collaboratively pursuing a “better life” with more words. But what is real
life in the context of living with stroke and aphasia? Is a return to life as a
whole and confident person contingent upon access to words or access to,
44 Pound
for example, feelings of self-esteem, fun, and life opportunities as a person
who lives with part of their language system missing? How do therapist and
client reconcile lack of full linguistic recovery with being comfortable and
satisfied with a new “whole” identity as a person with aphasia? What explicit
attention should therapist and client pay to promoting that more elusive
goal of improving life without improving language?
A significant realization in my therapist career, as in my patient career,
was understanding that wanting a cure and learning to live with disability
can and frequently do exist as fickle but close neighbours. The therapies
described below, in particular the “access to information” in the health
issues group, are a few examples of therapies that I believe can explicitly
work to create a natural coexistence for competing narratives. Clear and
repeated access to information presented in a non-sensationalized manner,
with space for discussion and reference to self, can be a powerful tool in
effective self-management.
DOING THERAPY DIFFERENTLY:

WHAT DOES THIS MEAN IN PRACTICE?
Daring to be different in practice, for me, then has entailed a rethinking and
reconceptualization of the scope and focus of therapy. It has also entailed
learning to live with the paradoxes and contradictions of therapy in a way
that reflects the paradoxes and contradictions of learning to live with disabil-
ity. Below I itemize some of the key factors of change in my practice as a
result of these insights. I do not propose these as a prescription for success
but more as speculative reference points about how to change tack in therapy
to be consistent with a resource-constrained and evidence-focused world.
1 Attend to attitudes and assumptions within therapy and life which im-
pact on the development of new identities—identities that integrate and
do not apologize for aphasia:
• Acknowledgement of the full impact of context and culture on the
content of therapy and how clients perceive it.
• Acknowledgement of the way narratives, particularly of restitution,
imbue the context and content of therapy as well as the external
world in western society.
• Acknowledgement of the roles that power and status play on the
undertaking of and engagement with therapy.
• Attention to the time and conditions that allow for therapeutic and
social context to be a part of therapy—for example, what frame-
works and resources go into focused group therapy?
• Discovery of the conditions and opportunities external to the “therapy
room” work that can support engagement in activity and life in a
way that does not reinforce incompetence or further disempower.
For example, people with aphasia can take part in teaching (e.g.,
training others to be conversation partners). In this case therapeutic
attention should be given to the process of preparation, feedback,
and highlighting the specific usefulness of the person with aphasia’s
experience. This allows for a foregrounding of control rather than
tokenistic use of clients in training exercises.
• Exploitation of fun and creativity as a tool and focus of therapy.
Therapy is a serious business but laughter and lightness and a free-
ing from a focus on doom and damage can be a prime facilitator of
learning and moving on (see Chapter 6 by Nina Simmons-Mackie).
2 Reflection on the role of the therapist and on how to make use of
therapeutic skills as a resource for support and expertise in relation to
the person with aphasia:
• Act as a reference point—for clarifying and revisiting information,
advice, and research, and working with the person to locate them-
selves within this knowledge.
• Act as a guide—to show people what is (and is not) available and
where sources of help can be found.
• Act as an advocate—giving people with aphasia and others the tools
to access services, complain about service gaps, expect flexible and
multifaceted support opportunities.
• Act as an interpreter—clearly translating for people the benefits
and advantages of more “oblique” therapy experiences, for example,
sharing stories with peers, participating in group-work, practising
both skills and new identities in a carefully supported way.
• Create the conditions that allow for more than a “patient–therapist”
relationship. Boundaries are important but enabling someone to
feel like a person as opposed to a patient, and modelling person-to-
person (not therapist-to-patient) interaction is a powerful tool for
supporting re-engagement with non-patient life and roles.
• Balance confidence and focus based on therapist expertise with re-
spectful listening and exploration of therapist naiveté—i.e., work
at the opportunities for integrating and valuing the integration of
therapist and client experience.
• Be confident in spending time with other key players in the re-
habilitation process—this may mean training sessions with other re-
habilitation staff and supporters, direct interventions with relatives
and friends, or opportunities for greater reflection on practitioner
narratives and the way they interact or clash with the core narratives
of clients and relatives.
• Be a skilled conversation partner (Simmons-Mackie & Kagan, 1999)
and also a skilled narrative partner (Pound, 1999).
Does this list imply that administrative, listening, and more generic skills
should replace or have priority over the technical skills of language and
46 Pound
communication therapy? Most definitely not. I still greatly value the tech-
nical knowledge and expertise that my physiotherapists shared with me. I
have no doubt that, were I to become aphasic, I would seek the best aphasia
therapist possible to help improve my language skills. But in retrospect I
also realize that this form of expertise alone did not move me forward.
I valued the careful listening of therapists and non-therapists, and the
challenge to view things differently that came from people who lived with
disabilities themselves. Ultimately it was these people with their entirely
different knowledge and understanding of the world of the “other” that
helped me to realize that my greatest steps in rehabilitation happened out-
side the therapy room.
Listening to clients discussing their likes and dislikes of individual therapy,
it is often difficult to find features that relate to more technical aspects of
language exercises. More often they highlight time, space, and a listening
relationship as the features of therapy they most value. It is this intense and
rather intimate relationship that acts as a rock in a time of stormy chaos. It
is this holding ground that becomes the first real reference point to a clearer
direction and more hopeful future. That is not to undervalue the technical
skills of the therapist, but it is also not to make light of the benefits of
listening, respect, and mutual engagement. Fortunately these skills are not
the privileged domain of speech and language therapists, opening up the
potential of more creative, long-term options of support and therapeutic
sustenance from a wider range of people.
DOING THERAPY DIFFERENTLY: IDEAS FOR ACTIVITIES
While conditions and a clear framework for delivering therapy are import-
ant, focused therapeutic activities also offer valuable footholds for the trav-
elling therapist. A fear that either the activity or the conditions may be
applied in a recipe-book fashion make me reluctant to describe therapeutic
activities that might support some of this work. Yet the activities and exer-
cises are often the most tangible point of therapy for clients and therapists
alike. I offer the following not so much as tried and tested therapies but as a
way of introducing opportunities to explore some of the paradoxes of therapy
with clients, relatives, and peers.
Poetry: Reconstruing identity and

recognizing power
“Cebrelating difference” is the way Chris Ireland, Connect’s poet in resid-
ence, describes her aphasia poetry (Ireland & Pound, 2004). With so much
attention to language errors as a source of deficit within both therapy and
everyday life, this is no mean achievement. Far from wanting her “errors” to
be corrected, Chris works and plays with her aphasia language to entertain,
challenge, and move her audiences. This type of approach has a more
powerful voice within disability arts culture where people with disabilities
celebrate their difference and diversity in poetry, song, dance, imagery, and
other forms of performance and creativity. This affirmative sense of identity
(Swain & French, 2000) is a direct challenge to the personal tragedy inter-
pretations of disability which often constrain and confuse newly disabled
people. Somers (1994) and Thomas (1999) talk about the way people with
disabilities frequently become trapped by these dominant stories and have
few options for creating more confident stories of self and disability, “People
construct identities (however multiple and changing) by locating themselves
or being located within the repertoire of emplotted stories” (Somers, 1994,
p. 613). Within healthcare settings and rehabilitation services, people learn-
ing to live with stroke frequently only have access to others’ stories of chaos
and restitution, risking perpetuation of more of the same.
Within the poetry workshops that Chris leads, participants (with and
without aphasia) are encouraged to explore their own aphasia world, to
have fun with language and to share experiences and stories of disability.
Examples of some of the reactions to My Asphasia Word (see Figure 3.1)
include a comment from a relative of a person with severe aphasia that
“a curtain has been lifted—it’s given me insight into the mind of a person
with aphasia”. Other reactions and points of discussion include the acknow-
ledgement from people with aphasia about the violation of their world by
others, the struggle to reclaim a new life, and the positive sense of being
reborn (Khosa, 2004).
Through the model of aphasia as something powerful and through claim-
ing difference as something creative, the poetry workshops give people an
opportunity to associate with a positive, dignified way of living with disabil-
ity. Not everyone may share Chris’s “cebrelation” of difference. But not all
of us share the same reactions to and opinions about Shakespeare and Chaucer
either—other great storytellers who use their language in creative and novel
ways. Reactions to poetry are not right or wrong, in the way that grammat-
ical constructions can be accurate or inaccurate. They are just different.
Health issues: Responding to restitution

The “health issues group” at Connect was set up in response to people’s need
to know more about stroke, aphasia, and the huge body of research that tends
to be either presented as a miracle cure by the media or explained in what is
often jargonized gobbledygook on the internet and in research papers. The
group is also a direct response to the powerful and pervasive role of the
restitution narrative in modern western society. Unaddressed, this narrative
can frequently seem to batter a clinician’s best attempts to move someone on
from a narrow focus on therapy and “getting better” to a life with a disability.
The group therefore aimed to give people with aphasia access to a more
rounded representation of research and information about stroke and health
48 Pound
Figure 3.1 My Asphasia Word.
issues. By providing people with access to meaningful information and the

opportunity to discuss its relevance to their condition, the group aimed to
help people develop a realistic view on healthcare choices and, where appro-
priate, find ways of accessing further information or treatment.
Figure 3.1 (Cont ’d )
The group covered discussion about stem cell research, latest develop-
ments in clot-busting drugs, and an exploration of the benefits of alternative
therapies in chronic disability. Because of issues arising around poor access
to information, several sessions became dedicated to developing a GP toolkit,
50 Pound
which would help individuals be proactive and assertive in accessing mean-
ingful information from their doctors. Inevitably, another important part of
the process was allowing group members the opportunities to tell and listen
to narratives of illness that people had accrued over their careers as users of
healthcare services.
Training conversation partners:

Recognizing expertise
A frequent tale from people who live with aphasia is of being disengaged
from life, excluded from involvement, or allowed in, but only on the peri-
phery, as a “charity case”. Because aphasia as a condition has become the
professional domain of speech therapists, neurologists, neurolinguists, cog-
nitive neuropsychologists etc., the people who live with aphasia are often not
“allowed” to be expert in their own condition. The experience of being
assessed and “done to”, firmly perpetuates the entrapment within patienthood
and inequality.
One way of actively involving people with aphasia and explicitly acknow-
ledging their expertise is to engage them as trainers in education and
awareness-raising initiatives. By this I do not mean being wheeled out to
exhibit some weird and wonderful disorder of language, but as storytellers
and people with powerful experiences to recount. To have some control
over the content and delivery of the teaching, roles need to be negotiated
and training aims agreed. Time needs to be spent on the initial explanation,
the process of giving feedback, and the post training debrief.
The training conversation partners programme at Connect is largely based
around the ideas of Aura Kagan and Jon Lyon, and focuses attention on the
notion of competence. Kagan (1995, 1998) critically identifies the role of
conversation in maintaining emotional and social well-being. Without par-
ticipation in conversation and opportunities to reveal their inherent com-
petence, people with aphasia risk becoming trapped in the negative spiral of
reduced opportunity, social participation, and maintenance of self-worth.
Teaching non-aphasic individuals to develop their own conversation-partner
skills and acknowledge the (often masked) competence of the person with
aphasia thus represents a source of power and control rather than passivity
and patienthood. With conversation ramps, time, and assertiveness training,
people with aphasia can both engage in conversation and actively provide
feedback to trainees that they are too fast, too woolly, or too patronizing. As
commentators throughout the training, they not only talk about but also
demonstrate their expertise in their condition. In addition to making a
contribution, people with aphasia acquire a status and power that validates
their expertise and hopefully engages them in enjoyable conversations as a
byproduct of the training.
It ain’t what you do it’s the way that you do it
In summary, each of the above, as with any group activity, offers the oppor-
tunity for discussion, sharing stories, expressing opinions. These ideas for
therapy are nothing new or earth-shattering. But with attention to the issues
of process and context expressed above, the groups offer a means of expli-
citly tackling themes of identity and expertise, access to information and
control, and social engagement. By not apologizing for aphasia but acknow-
ledging the desire to minimize its effects they can offer a more rounded
approach to the complexity of learning to live with disability.
CONCLUSION
In summary, I have used my personal experience as patient and practitioner

to discuss why reaching some state of “acceptance” or coming to terms with
chronic disability is such a long and often lonely path. Not only is one battling
the condition, but also the media, the views of friends and family, and even
the friendly fire of the therapists and doctors. People with disabilities them-
selves may also be difficult to associate with, being a part of the “otherness”
from which the newly disabled person is striving to distance themselves.
Register (1987) calls acceptance: “ability to regard the illness as your
normal state of being” (p. 31). This could mean learning to identify with a
new body, communication style, and social role. Wendell feels that for her,
this had many advantages: I stopped expecting to recover and postpon-

ing my life until I was well . . . I changed my projects and my working
life to accommodate my physical limitations, and, perhaps most import-
ant, I began to identify with other people with disabilities and to learn
from them.
(Wendell, 1996, p. 177)
Learning to live with disability and difference is full of interesting para-

doxes—the desire to get on with your life, but the seduction of pathways to
therapy and cure, the desire to be ordinary, but the inescapable facts of
difference, the apparent enormity of the potential of therapy yet its insigni-
ficance in the grander scheme of life. Perhaps we need to be more mindful
of these paradoxes as we listen to the hopes and aspirations of our clients.
As travelling companions possibly our most precious gift is to be familiar
with and unfazed by these contradictions. This is the positive alternative to
the distanced healer described by Montaigne who “paints seas, rocks and
harbours while sitting at his table and sails his model of a ship in perfect
safety. Throw him into the real thing and he does not know where to begin”
(Montaigne, Essays 3.13., quoted in Sacks, 1991).
52 Pound
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54 Lyon
4 Evolving treatment
methods for coping with
aphasia approaches that
make a difference in
everyday life
Jon Lyon
This chapter presents a therapeutic gestalt. The journey it chronicles, though,

is linear in time. It highlights what I have learned as a clinician and clinical
researcher over thirty-some years of treating people confronting aphasia and
stroke. It attempts, as well, to speak to key lessons learned along the way
from survivors, not just as clients, but as friends.
The two key lessons learned are too extensive to detail in full here — but
then, you needn’t see every slide of a friend’s trip down the Amazon to glean
the sense of its watery, lush green context or to capture its beginning, mid-
dle, or end. In fact, the intent and focus of this chapter rest more with where
the journey led rather than understanding every step en route. Accordingly,
it starts with an overview of the trip’s conclusion, followed by a brief case
example of key theoretic parts in those lessons learned. It next places these
theoretic constructs into a visual model and addresses their management. It
concludes with a metaphor for treatment that derives from my schooling
over these many years from affected parties.
MY JOURNEY’S LANDMARKS
Before turning to the journey’s end, let me highlight a few landmarks that
surround it and, in retrospect, seem as if they guided its progression. They
are reflected in the title of this chapter, in the phrase, “that make a differ-
ence in everyday life”.
Making a difference in everyday life

In my view, there are three treatment outcomes that define whether aphasia
interventions make an appreciable difference in daily life: substance, sus-
tenance, and cost. Each is important to the growth and longevity of aphasia
treatment in today’s often curtailed healthcare systems.
4. Making a difference in everyday life 55
Substance
First, treatments must yield substantial benefits to the process of living daily
life—that is, outcomes must be life-altering. Their ends must qualify as
“life-essential”. Furthermore, these gains need to extend beyond the person
with aphasia; they must assist and benefit others, those whose daily routines
will never be the same because they are confronting the constancy and
permanency of aphasia’s enduring disability. This means we must either:
(a) repair or augment language and communication sufficiently in the person
having aphasia so that chosen life processes resume for key affected parties,
or (b) augment chronically altered life systems of such individuals, stem-
ming from disrupted communication, so that value and importance return
to daily life.
To date, speech-language pathologists (SLPs) have devoted the bulk of
their therapeutic efforts to part of the first treatment option: clinical repair
of language and communication in the person having aphasia. Ensuring that
such gains appreciably impact on the living of daily life for key affected
parties (Pound, Parr, Lindsay, & Woolf, 2000), or managing aphasia’s en-
during long-term life disability, have only begun to emerge as viable under-
takings (Byng, Pound, & Parr, 2000; LPAA, 2000). These two issues, however,
are essential and integral to finally yield life-altering outcomes. Treatment
of communication outside preferred life contexts can only yield such ends if
that treatment of communication notably enhances the living of all of life.
When life systems and functions are only minimally compensated through
traditional emphases on language/communication restoration, as is typically
the case with moderate to severe chronic communication breakdown, then
active and chosen re-involvement in life must play a more central role in
long-term management plans.
Sustenance
A second defining treatment outcome is that realized gains be sustainable.
Benefits to living life must continue after treatment’s end. As well, whatever
gains accrued must transfer to and benefit other novel and/or untreated
daily activities. To achieve the latter, interventions must extend beyond
functionality in circumscribed life arenas of communication, such as ex-
pression of basic needs, answering a phone, or chatting with a friend. As
espoused by a life participation approach to aphasia (LPAA, 2000), they
must affect broader life venues, and must enhance attitudes and feelings,
social connections with others, and participation in chosen daily routines.
Cost
Third, treatment outcomes must justify their effort and cost. Besides enhanc-
ing the act of living life, they must satisfy basic payer and consumer requisites.
56 Lyon
As noted in an earlier text (Lyon, 2000), such requisites are neither mutual
nor shared among healthcare “players”. Payers seek minimal expense while
ensuring stable health, basic return of function, and prolonged wellness.
Consumers desire maximal care for optimal return of lost function and emo-
tional well-being, and social inclusion at minimal personal expense. For us,
the providers, this means we must somehow devise interventions, that yield
greater functionality and inclusion at less expense.
To some extent, this cost has been addressed in healthcare systems that
attempt to restrict service delivery to offerings that shift treatment away
from repair of the communicative impairment (basic language skills) and
towards its disability (communicative use in daily life). Although this tack
may conform better to payer demands, it is questionable whether it has
provided improved consumer satisfaction. To achieve the latter and keep
payers at bay, it would appear that we may need to do more to “pass on”
management responsibilities directly to consumers. We must hone skills
that empower them to manage their own therapies, outcomes, and destinies
more completely. To accomplish this, our treatment role needs to shift from
attempting to “fix” (using direct “hands on” attempts at repairing com-
municative systems) to advising (consulting in ways of circumventing bar-
riers in life when even somewhat repaired communication does not readily
overcome those barriers). Even when our treatments of the language/
communication impairment are optimal, they seldom “restore” function to
its prior, non-injury levels. Thus, seldom is there no need to address the
disabling features to daily life. We must begin that process from the outset
of injury rather than as an afterthought. Initially, this intervention involves
better counselling about the totality of injury and how, in a time-based
manner, the consequences of injury (both acute and chronic) might be
addressed.
As advisors, we must do more to find cost-effective ways that permit
consumers to return intermittently to us for “life-adjustments”, especially as
long as they demonstrate the ability and motivation to work independently.
Over time post-onset, and as they become more aware, able, and responsible
for themselves and their altered lives, it only stands to reason that they will
know better what is most missing and still sought in life. Given changing
performance levels, we must be able to advise and guide them, primarily
through consultation, in how to proceed towards other life-altering ends. It
is towards these ends that we must continue to strive if aphasia treatment is
to gain the prestige and availability it so desires.
THE JOURNEY’S CONCLUSION
Paul Ehrlich, Professor of Biological Sciences at Stanford University, and

known in America for his 1960s book, The Population Bomb, recently com-
pleted another noteworthy text: Human Natures (Ehrlich, 2000).
In this era of scientific specification about genetics, particularly the map-
ping of the human genome, Ehrlich’s book suggests that environmental
influences in the living of life are actually more significant in determining
our basic human natures than our genes. Note that Ehrlich refers to our
“natures”, not nature. He contends that there is no single human nature, but
rather that we are a blend of many natures. He argues that no pre-ordained
genetic code will unveil a magical map that explains the totality of our
behaviour or make-up, and he believes our secrets rest in a complex inter-
play between heredity and environment. Ehrlich writes:
. . . the notion that we are slaves to our genes is combined with reliance
on the idea that all problems can be solved by dissecting them into ever
smaller components—the sort of reductionist approach that has been suc-
cessful in much of science but is sometimes totally unscientific. It’s like the
idea that knowing the color of every microscopic dot that makes up a
picture of your mother can explain why you love her. Scientific problems
have to be approached at the appropriate level of organization if there is to be
a hope of solving them.
(Ehrlich, 2000, p. 4)
So, too, Ehrlich’s metaphor holds true for fashioning effective treatments
for people confronting aphasia. We cannot hope to resolve their dilemmas
without first addressing them at their proper level of organization. Cer-
tainly, at times, we need to dissect the whole in order to create an effective
management plan, but each individually designed and directed “surgery” can
only work if it remains embedded in the broader schema of each person’s
initial framework. When we stray from this tenet, we risk getting lost in
counting coloured dots instead of supporting what is possible for an indi-
vidual, and, likely, most beneficial within that constellation.
Strangely enough, as alluded to by Ehrlich, we are often told that it is “for
the sake of science” that we must study, categorize, and conclude from every
“dot” in order truly to capture the image’s whole. But no matter how scient-
ifically inspired or how well we examine each pixel in a particular photo, we
will never, through that means alone, learn “why” we love that face. Those
answers rest at an entirely different organizational level.
Ehrlich’s principle accentuates the significance of my journey’s conclu-
sion, where my therapeutic forays have led me over the past three decades.
Table 4.1 details my prime treatment phases over this interim, as well as
some associative references. With each phase, you will find a brief descrip-
tion of what was done, where, why, what worked and didn’t, and what
prompted the next cycle of exploration.
Briefly encapsulated, my professional journey began with speech/lan-
guage restoration in the person having aphasia (Phase 1: Mid 1960s to late
1970s). From there, it moved towards a novel system of augmenting com-
munication when verbal expression was severely restricted in the injured
Table 4.1 My professional journey
WHEN WHY WHAT WHAT WHAT DIDN’T CONCLUSION

WHERE REFS FOR WHOM HOW MUCH WORKED WORK WHAT’S NEXT?
(when) (why) (what) for most: • Many “treated” (conclusion)

• Mid 1960s • To restore language • Schuellian-based • Instilled hope at a lang/comm. forms/ • Therapy was more
to late 1970s and communication language stimulation; time of personal and strategies didn’t palliative than
Bruce Porch’s treatment emotional despair “transfer to” or curative; targeted
(where) (for whom) along “the fulcrum of • Legitimized one’s “work in” real life only the impairment
• University and • Person with the curve” changed personage by • Nor did treatment (WHO, 1980) of
hospital clinics aphasia immediately showing deal with life language
(how much)
that an absence of processes or • Overall, though,
• 100s of hour
words was not an systems once outcome better than
sessions . . .
absence of mind permanency of credited in today’s
until clinical gains
• Reinforced comm. injury was known healthcare system
ceased/ “plateaued”
use with its current • Emanated from
(whatever that means)
form and content; a medical model,
or affected person
got client “moving where efficacy
“able” or “willing”
forward” by focusing hinged solely
to participate
on return rather than on proven clinical
dwelling on loss return to impaired
• Some gradual gains lang/communication
in lang/comm • Didn’t assess,
for some: nor attempt to, its
• Moderate psychological
gain in lang/comm merit to patient
• Enough to jump- and family
start adaptive ways • (Viewed as
to learn to “live antithetical
with” functional “hand-holding”)
differences however, in
retrospect,
for a few: a primary and
• Big improvement in significant offering
lang/communication; and effect
able to return to self-
(what’s next)
determined lifestyles
• Notable void was
in addressing the
effective use of
communication
in daily life
(when) (why) (what) • Those with • People with aphasia (conclusion)

• Late 1970s • To enhance comm. • PACE-like; moderate–severe do not draw normally, • Drawing is “another
to late 1980s interactions in daily communicative Broca’s communicate nor should one expect comm. door” (a
life for adults who use broadened to better with drawing them to; drawings are medium through which
(where)
were verbally accept “interpretable” than without often unrecognizable to interact); when
• Hospital clinics
restricted content instead of • Drawing often to naive interactant appropriate, it is more
(references) linguistic accuracy helpful in accessing • Most users unable advantageous than not
(for whom)
• Lyon & Sims, • Began probing inner thought and to draw comm. on • Best used
• Person with
1989 drawing’s potential: establishing a means command interactively, not as
aphasia
• Lyon, 1995a,b the ability to draw of interacting/ • Not an automatic an isolated “taught”
recognizable objects, turn-taking that dyadic “choice” compensatory skill
actions, simple and otherwise was not in real life
(what’s next)
multi-stage concepts there through speech, • Latency or readiness
• Even when
for comm. purposes writing, gesture, or commonly associated
advantageous, dyads
comm. boards with its use
(how much) used it sparingly in
• Success depended • Success has more
• The latter couple of real life; lack of use
on skill, ease, and to do with how it’s
months of treatment, had as much to do
comfort of use with the presented and used,
when verbal with their comfort
normal interactant than the often
restoration had and patience, as
interpreted “refusal”
proven to be minimal well as, meaningful
to try it as a comm.
activities “to talk
aid
about”
Table 4.1 (Cont ’d )

(when) (why) (what) • Activities of • Didn’t readily (conclusion)

• Late 1980s • To enhance • Pairing adult with choice in real life change other “forms” • An effective
to mid 1990s involvement and aphasia with a novel • Bolstered desire/ and “operations” of intermediate and
participation in community volunteer, ability of person with daily life, either for practical step towards
(where)
real life in order teaching them how aphasia to self-initiate, affected adult or establishing self-value
• Hospital clinics
to counterbalance to interact easily and -determine and those closely/ in one’s changed
and real life
lacking self- effectively, and then -regulate participation intimately status in life
settings
confidence/pride; using this friendship • With purpose cause a part of those • Didn’t adequately
(references) besides building to foster participation outside him/herself life processes address eroding
• Lyon, 1996 image/esteem, in chosen activities in rather than being • Didn’t “halt” the personal aspects
• Lyon, et al., critical in creating real life treated as a person common, and of life within key
1997 reasons to want (Communication Partners) unable to talk, insidious separation relationships
• Lyon, 1997 to comm. viewed as a person and isolation of
(how much) (what’s next)
• Provided reason people within prime
(for whom) • Person with aphasia, • More attention
“to be”; created relationships, i.e.,
• 5–6 months community volunteer needed in achieving
“flow”; sustainable a loss/erosion of
following end and significant other(s) ways of keeping
following tx’s end personal intimacy
of traditional tx affected parties
“together”
communicatively
and personally
(when) (why) (what) • Understood by • Not used as often or (conclusion)
• Mid 1990s • To enhance • Focused on value and interactants as freely as desirable; • A valuable
to late 1990s interpersonal role of communication in intellectually, and hard for normal adult “step” in helping
communication daily life, more than “its “endorsed” strongly to sustain “tempo” to establish and
(where)
in real life form” and the “need” to when modelled (give and take) at keep personal
• Real life
• Keep involved exchange content • More complex to first; tendency to focus ties stronger
settings
parties more • Instructing, modelling incorporate; process too much on content between “key”
(references) “connected” in and coaching more difficult than it and not enough on affected parties
• Lyon, 1999b negotiating and couples in ways appears manner and
(what’s next)
conducting “the to stay connected • Can, though, with camaraderie of
• “Sooner” as a
basics” of daily life communicatively ongoing commitment interaction
treatment focus
(interactional comm. of ALL interactants, • Hard, as well, to rid
(for whom) rather than later;
therapy), rather than work to become an aid non-aphasic interactant
• 2–6 sessions vital component
solely conveying content to daily interactions of personal biases
following end of in addressing joint
(transactional comm. about the nature of the
traditional tx wellness of within
therapy) problem and how best
framework for the
• Dependent on to circumvent them;
conducting of daily
refinement of a feels foreign . . . as
life in its changed
DIFFERENT set of one would expect in
forms
comm. skills that this has never
• More about shared been a part of their
style, comfort and prior interaction
pleasure in the act of
communicating than
extracting every
morsel of meaning
(how much)
• Person with aphasia
and significant others
in daily life
62 Lyon

(when) (why) (what) • Enhanced overall • Not an adequate (conclusion)

• Mid 1990s • To restore • Asked affected parties daily quality to all sample to “judge” • Again, important
to late 1990s familiarity, form to detail time spent prior affected parties; method fully; however, addition to restoring
and “fun” to to injury and currently tended to give more pre-injury and current life’s daily form
(where)
daily routines by in free and obligated responsibility and ratios of free and and having current
• Real life
attempting to re- activities; using prior- purpose in life to obligated activities operations “feel”
settings
establish pre-injury to-injury ratio as referent, the person with in daily life do NOT right and productive;
(references) ratios of free and began working with each aphasia, while realign fully; there less restorative of
• Lyon, 1999b; obligated time in person on ways to move “freeing up” the is “significant” close personal ties
Lyon, 2000 chosen daily current values towards significant other movement toward between parties/
activities earlier values; not the from assumed duties prior values, but not operationally, it
same activities as associated with the fully; likely “not” may be helpful
(for whom)
before, but generally injury and allowing preferred after injury; to embed these
• Months/years
more obligated time for this supportive other aids in the “outward” treatment processes
following the end
people with aphasia more independent appearance and into a theoretical
of traditional tx
and more free time for time to pursue and the conducting of framework that
significant others/all accomplish activities life, does not addresses more life
persons whose daily life of choice (free time) necessarily address system changes and
is continually impacted more important how to achieve them
by the absence of the “inward” personal for all persons closely
uninjured self of the effects of injury affected by aphasia
person with aphasia rather than individual/
separate treatment
plans for everyone
(when) (why) (what) • Provided a • Not treatment (conclusion)
• Late 1990s • To enhance • Based on LPAA theoretical and that’s easily charted • Clearly a treatment
to present the living of life treatment philosophy practical framework in conventional framework that
by identifying and framework, in which to treat life “cause–effect” deserves more in-
(where)
and reducing assessed life barriers participation; although accounting systems depth examination,
• Real life
life barriers of affected parties to the effects of disrupted • It often is NOT i.e., in developing
settings
see which interfere communication reducible to “how better ways of
(for whom)
(references) most in chosen daily “underlie” the life many” or “how much” confronting life
• Months/years
• LPAA, 2000 operations; examine barriers addressed, of given constructs are barriers and
following end
• Byng et al., each scenario for ways it is not that, per present now that documentation of
of traditional tx
2000 to diminish/circumvent/ se, that drives the weren’t prior to outcomes and their
remove obstructions so remediation; instead, treatment importance to the
person can “partake” it is the enhancement • Final results more living of daily life
more easily and freely of: feelings/attitudes, generic, “my life
(what’s next)
connections with today is far better
(how much) • More still needed
others, and activities than it was six months
• All persons whose in ways of keeping
of choice ago, I’m doing more,
daily life is continually intimacy “alive”
• When improved, feeling better about
impacted by the absence and “well” in the
so too is life’s quality what I do and my
of the uninjured self of personal relationships
and daily pleasure relationship with
the person with aphasia of people confronting
others; I’m confident
aphasia on a daily
more is possible”
basis
64 Lyon

(when) (why) (what) • Have only • Not looking for ???

• Late 1990s • To understand • “Coping” is NOT a “begun” looking into treatment interventions
to present and determine what personality trait or personal intimacy in at moment
“coping” with the a preordained skill/ relationships in • Looking instead for
(where)
lasting effects of ability; little known, couples coping with what has and has
• Real life
aphasia means though, about the the chronic aspects not worked
settings
and entails in ways relationship of injury associated to keep intimacy a
(references) everyday life; more ties “change” when with aphasia/stroke part of life in couples
• Coping model specifically, it’s aphasia is a constant • Some “notable” long post-onset
related to effects upon in life and what self results exist in
intimacy relationship ties/ adopted methods of normative literature
• Lyon & personal intimacy coping seemingly to suggest that
Shadden, 2001 “work”; have begun subcomponents
(for whom)
examining “how” (emotional, sexual,
• Months/years
coping has or has intellectual,
following end of
not been of aid in recreational) must
traditional tx
preserving personal all be there and,
bonds/ties in key to some degree,
relationships in life “well” to have entire
package function
(how much)
• Wellness in these
• All persons whose
realms is likely linked
daily life is continually
to physical wellness
impacted by the absence
of the uninjured self of
the person with aphasia
adult—Communicative Drawing (Phase 2: Late 1970s to late 1980s). Next
on my journey, I sought to enhance participation in life through novel
partnerships—Communication Partners (Phase 3: Late 1980s to mid 1990s).
Next, it evolved to include enhancing communication within two-person
dyads in natural settings, along with making readjustments to the kinds
and amounts of daily activities (Phase 4: Mid 1990s to late 1990s). More
recently, my journey has addressed key life realms that slowly, and often
insidiously, change for the worse due to the sustained absence and lack of
continuity of daily communication (Phase 5: Late 1990s to present). Viewed
as an evolution, the dominant progression over this 30-year period has been
away from isolated repair of language and speech in the injured adult and
towards methods that ensure long-term preservation of self and others, and
participation in daily life, domains that erode due to chronically disordered
communication.
Considering Ehrlich’s claim that solutions to problems must evolve fore-
most from the selection of a proper organizational level, my own conclusion
is that we, too, must address communication remediation within its rightful
whole. Communication is not a free-standing entity or “thing”. In this re-
spect, it is not like an arm or leg that suddenly doesn’t work due to paralyzing
injury. The prime role in life of verbal communication is to help organize
and mediate thought (past, present, or future), to share those thoughts with
others, and to provide a medium for interpersonal interaction. As such,
talking does not serve a central function outside its connections with the
processes of living life. If the forms and actions of daily life were somehow
suddenly removed, there would be no reason or need to “chit-chat” with
others. Thus, communication is more a life-conduit, channel, or interpersonal
medium than a separate, isolated entity. It is from such a view that Kagan
(1998) has popularized the concept of aphasia as involving disruptions of
communicative “access”. When communication becomes disrupted in later
life (e.g., through aphasia) and when permanently so (chronic condition),
it does not solely, or even primarily, affect the act of communicating per se;
it alters “access” to every major domain of daily life. Since the results of
our restorative efforts (treatment of the communicative impairment) are
only partially successful, our treatments must address life functions and
systems in order to become more life-altering and sustainable (Byng et al.,
2000; LPAA, 2000). In this way, the value and importance of daily life can be
enhanced.
From my thirty-some years of intervening, the organizational level from
which I now choose my entry point into rehabilitative efforts is that of the
life processes that matter most to affected parties. This same organizational
level also directs the search for both communicative and other strategies
that permit the individual’s safe and viable return to participation in life.
Although it may seem like a subtle departure from traditional goals, this
organizational whole actually emanates from augmentation of life processes,
rather than communicative processes that best support daily function.
66 Lyon
A REAL-LIFE EXAMPLE
Last spring I began seeing a 78-year-old woman named Patty. She had
incurred a left cerebral occlusive infarction approximately a year before. She
was left with a moderate/severe Broca’s aphasia and a mild right hemiparesis.
Patty was ambulatory and self-sufficient with her basic ADLs (Activities of
Daily Living) at that time. Her functional speech was limited to “yes/no”
and a few automatic phrases (I’d like that; how nice). Her auditory compre-
hension, although functional, was easily compromised, through either the
quantity or complexity of language spoken to her. She recognized basic
printed words and grammar, but had difficulty with reading comprehension
beyond the sentence level.
Patty lived in the home of her daughter, Carol. Besides Carol, the house-
hold included Carol’s husband, Martin, and their 10-year-old daughter,
Megan. Patty, a long-time divorcee, had moved into Carol’s home at the
time Megan was born. And since the two of them, grandmother and grand-
daughter, had been with each other all Megan’s life, they shared a very
special and close bond. Patty had always been involved in the process of
living life, and was an “on the move” type of person. Besides working full-
time at a nearby bookstore, she had helped around the household and in the
rearing and support of Megan. Patty had been an avid reader and enjoyed a
variety of literary styles. She had actively sculpted with clay and took private
lessons weekly. In addition, she had assisted in starting two community
support groups for people with a history of chronic heart disease or failure,
and remained an active member. She was adored by many persons with
whom she had come to know and share life.
At the time I began my intervention, life’s daily form and structure was
quite sparse. Patty had just become a consumer of a Madison, Wisconsin,
healthcare agency that provided total health care “in the home” of the
elderly as an alternative to institutionalized care (a nursing home or an
assisted living environment). That agency ran an adult daycare centre and
Patty had begun attending their functions twice weekly. Otherwise, Patty
was at home where there were no formal opportunities for activity. She
might occasionally go with her daughter or granddaughter to lunch or to
do some shopping, but basically she sat idle much of each day. She was
not a television enthusiast.
Prime participants in Patty’s life were approached as to the life barriers
that stood between them and their desired involvement with Patty or their
participation in their own daily life choices. From this process, lists were
made of barriers that originated because of Patty’s aphasia. Table 4.2 con-
tains a summary of the items on these lists along with a list of others (life
facilitators) who might be available and willing to assist with minimizing or
circumventing these life barriers.
Note that Patty’s list centred around feelings of disconnection from
others and personal inadequacy in daily life. As well, she longed “to do”
Table 4.2 Directly affected persons: Life barriers and facilitators
PATTY CAROL (DAUGHTER) MEGAN (GRANDDAUGHTER)
BARRIER FACILTR BARRIER FACILTR BARRIER FACILTR
• Communication • Carol • No assured way of • Martin • Missing her closest • Carol

with Carol, Megan • Megan knowing Patty’s wishes • Megan friend and confidante • Martin
and others • Elder Care or opinions in daily life • Elder Care in life • Patty
• Feeling “able” to act • SLP • Wanting “more” quality • SLP • Unsure whether • SLP
on her own behalf and quantity engagement she was responsible
• Participation in life in daily life • If still possible, how
(in and outside home) • Respite care to reconnect with
grandmother
68 Lyon
Table 4.3 Treatment target/process/outcome
WHO/ TARGET PROCESS OUTCOME

BARRIER
• Carol and • Enhance their • Principles of Supported • Comfort in

Patty ability to Conversation (Kagan, interacting; more
interact 1998) paper/pencil; reliable info
comfortably key words written exchange, not
and effectively out choices/ratings always complete
of them/verification
sketching
• Patty • Increased • OUTSIDE HOME • Greater pleasure in

engagement – ceramics private lesson and anticipation of
“of choice” – volunteerism: day’s/week’s offerings
in life former place of
employment
cardiac support group
• INSIDE HOME
– assisting:
making bed daily
sorting laundry/
folding clothes
– talking books
• Megan • Exploring new • Joint cartoon strip • Increased interaction

and Patty ways for them • Movie rentals in daily life
to connect
something of personal importance to her. Her daughter, Carol, was unclear

as to whether anything more could be done interactively with Patty to dis-
cern her basic knowledge, desires, and wishes. She wanted more in life for
her mother. And she needed more free time (respite) for herself. Finally,
Megan deeply missed the companionship of her closest friend and con-
fidante in life. She was desirous of anything that might allow her and her
grandmother to have closer contact and interaction. Also, she was concerned
that maybe she hadn’t acted as fully and as quickly as she should have at the
time of her grandmother’s stroke. A year earlier, when returning from school,
she had found her grandmother on the floor unable to walk or talk. It had
taken Megan some time to realize that she should have called the emergency
number. She wondered, “Did my delay cause my grandmother’s condition?”
Table 4.3 contains an overview of treatment targets (life barriers selected),
processes, and outcomes that followed. Since Patty and Carol both expressed
a desire to connect more with each other, we began by addressing the
adequacy and fullness of communication between them. What became
immediately apparent to all parties was that there was much, much more
that could be shared and ascertained (both in form and quantity of content)
than either had previously thought. By slowing down their interaction, and
by giving each of them a clearer role of how and what to do in order to
negotiate their sharing, they began feeling more successful and even broach-
ing novel topics. Strategies for this improved interaction centred around
writing out key words (concepts and choices) which Patty could refer to as
the conversation progressed. Besides giving her a way to rank or judge each
idea (through accompanying numerical, lined ordinal scales, from “no inter-
est” to “so-so” to “very interested”), it provided a quick and reasonable way
to verify Patty’s understanding and position on given topics. Such supportive
or augmentative techniques to dyadic communication have been detailed
elsewhere in greater depth (Kagan, 1998; Lyon, 1999b). In essence, though,
Carol and Patty began interacting in realms never previously approached.
Although shared informational content was not always complete or even
certain, the quality of their “connectedness” in life had improved.
Next, we addressed a couple of “life barriers” on Patty’s list. These selec-
tions focused on increasing her sense of personal value and participation in
chosen activities in daily life. Outside the home, we re-established weekly
private lessons with her former ceramics instructor. We set into motion the
machinery necessary to allow Patty to return to her former place of employ-
ment, not as an employee but as a volunteer. We arranged for her to volun-
teer one morning a week, assisting in basic tasks of personal choice at her
neighbourhood bookstore. As well, we found a productive role for her in her
woman’s cardiac support group, adding the names of new members to a
computerized mailing list. Inside the home, she assumed more responsibility
for her own self-care as well as for household chores. She made her bed
daily and assisted with the family’s laundry by sorting and folding clothes.
Finally, we oriented her to “talking books” (audio cassette books), to help
re-establish a preferred former activity. By everyone’s assessment, the multi-
tude and diversity of these endeavours increased Patty’s participation and
pleasure in daily life.
Next, we explored ways of bringing Patty and Megan together. One realm
that immediately provided “a foot in the door” was interactive drawing. On
a regular basis, Megan actively and adeptly drew at home, and designed
cartoon strips of her own invention, with personal characters and plots.
Since Patty could share in this modality, in that she possessed the ability
to draw simple stick-like figures and, with Megan’s help, could alter visual
applications to differing scenarios, it was a natural arena where they could
play and explore together. They quickly created a couple of cartoon strips
and, within days of starting these activities, Carol reported that Megan was
more attentive and responsive to her grandmother’s needs in other life realms,
like asking to assist her on trips outside the home. As another example of
strategies to increase their interaction, we arranged for them to visit a video
store together, selecting films for each other, viewing them together, and
discussing the “appropriateness” of their selections.
This encapsulated segment of treatment does not attempt to capture
the totality of intervention with Patty, Carol, or Megan. Instead, it serves
solely to exemplify the organizational therapeutic level alluded to earlier. It
70 Lyon
involved approximately 12 one-hour sessions over a 3-month period (from the
twelfth to fifteenth month post-onset). The costs of these services ($50/hr,
approximately $250/month) met with the full approval of Patty’s healthcare
payer, who also sought her improved quality of life, as long as such services
generated sustainable life differences at a reasonable rate. Note, too, that
no treatment claims to this agency involved Patty’s ability to communicate
independently. All treatment targets centred, instead, around life systems
for affected parties (the “disability” of aphasia, rather than just the “impair-
ment”). Again, in terms of cost effectiveness, all goals achieved here were
met at a total cost of around $600. Perhaps more importantly, the extent of
sustainable, “life differences” (that truly mattered to those affected parties)
exceeded what may have evolved from 12 hour-long sessions that focused
solely on communication repair within the person with aphasia.
To clarify, this example is not intended to suggest that aphasiologists
haven’t advocated for inclusion of key natural life variables and settings as
a crucial component of therapy. Notable in this respect are the works of
Lubinski (1981, 1986), who eloquently detailed the importance of address-
ing chronic communication impairment at increasingly complex levels of
social interaction in daily life. Termed a “systems approach”, such schemas
target communication repair within the affected person first and then move
progressively outward to family, friends, work associates, and eventually to
interactions in society at large (see Figure 4.1). The prime target of such
treatment is “improved communicative use” within real-life contexts. As
Person with
Aphasia
Close
Family and
Friends
Those
Individuals
Most
Frequently in Contact
NOW
Society at
Large
Figure 4.1 Systems theory: Treatment of more than communication repair. Treatment
target: Communication efficiency and effectiveness at each life systems
level.
such, this organizational “whole” aligns itself well with our prime profes-
sional role traditionally, as communication repair specialists.
The organizational level in Patty’s case, though, is different. What was
targeted in this “whole” was the re-involvement of affected parties in chosen
pursuits in daily life. Once these systems became identified, the diminishing
of life barriers, communicative and otherwise, could begin, thus permitting
optimal function to return to preferred levels of daily use. Accordingly, the
therapeutic targets here align more closely with the goals of improved feel-
ings/attitudes, connections with others, and participation in daily activities
(Byng et al., 2000; LPAA, 2000).
As speech-language pathologists, we may wonder whether our profes-
sional expertise and training qualify us to be “life participation experts”.
Originating from a medical model of managing acutely disordered com-
municative functions and their repair, such a role shift may seem incongru-
ous. However, advocating for treatment of chronic dysfunction in life is
not, since these consequences arise largely from an absence of knowledge
about the nature and/or permanence of the communicative injury. Although
we may not possess sufficient knowledge of all aspects of life participation to
recommend precisely how life should proceed, we do possess:
• the knowledge of impaired communication and the skills necessary to

help in the gathering of information from all parties;
• means of assessment of what is possible;
• ways to strategize and facilitate achieving these ends.
We are the professionals who can best serve in this role, as interpreter and
negotiator, to ensure that clarity of choice in life is understood, offered, and
pursued. From there, the implementation of these selections may begin.
Often, affected parties feel comfortable progressing in small steps of their
own making. Occasionally, though, such efforts may require the assistance
of other professionals (e.g., occupational therapists, physiotherapists, social
workers, and nurses) to ensure their optimal function and safety. Regardless,
broken life systems are not only justifiable therapeutic undertakings for SLPs,
they may represent the organizational level at which we are most apt and
able to yield sustainable, life-altering outcomes.
A LIFE PARTICIPATION DIAGRAM
Figure 4.2 contains a visual representation of the theoretic underpinnings

involved in Patty’s case vignette. The theory for these constructs originates
from a Life Participation Approach to Aphasia (LPAA), and the seven clin-
ical experts (R. Chapey, R. Elman, J. Duchan, L. Garcia, A. Kagan, J. Lyon,
and N. Simmons-Mackie) who authored that publication (LPAA, 2000). As
well, P. Fougeyrollas and his colleagues (Fougeyrollas, Cloutier, Bergeron,
72 Lyon
WELL-BEING
purpose/direction
meaningful ties with
others TIME POST-ONSET
mastery of
environment LIFE FACILITATORS
ENHANCERS
PARTICIPATION therapists/doctors
IN LIFE
communication family/friends/colleagues
mobility others
society/community
AFFECTED PERSONS
directly
LIFE BARRIERS indirectly
personal (internal) INTERVENTION
physical/communicative TARGETS . . . ENABLING
psychological feelings/attitudes
connections with others
activities of choice
Figure 4.2 Diagram of life participation in aphasia (Lyon).
Cote, Cote, & St. Michel, 1997) directly influenced the form and content of
this model. These latter model builders were obviously influenced by the
World Health Organization’s earliest efforts (1980).
Core components of my version of the LPAA model, displayed as over-
lapping circles in Figure 4.2, involve the interaction of three highly dynamic
life domains over time post-onset: (1) affected persons, like Patty, Carol,
Megan, and Martin, (2) life barriers, as just defined, and (3) life facilitators /
enhancers, “others” in life who might enable affected persons towards re-
involvement in desired daily activities.
Affected persons not only include those directly impacted (the person
with aphasia and close family, friends, and business associates), but may also
include those indirectly involved (family and friends who are less present,
and novel acquaintances who would like to share parts of life with the person
having aphasia, yet, due to limited knowledge about the impairment, feel
uncomfortable or uncertain as to how to proceed).
Life barriers involve curtailments “within” (personal) or “outside”
(environmental) the affected person. Personal realms include physical
differences in cognition, language, mobility, and sensation; or psychological
differences to self-esteem, worth, confidence, growth, acceptance, intimacy
and personal bonds, and wellness (happiness). Environmental realms involve
physical differences like access to buildings, places, and activities of per-
sonal choice, and social differences like access to participation in societal,
political, religious, judicial, or educational gatherings. Depending on the
affected person and the time post-onset, any one of these, or a combination
thereof, may obstruct or hinder access to preferred/chosen pathways in
daily life.
Life facilitators/enhancers typically refer to trained professionals (medical
and rehabilitative personnel) in the initial weeks and months post-onset.
However, as the chronicity of impairment becomes known, facilitation of
and within daily life increasingly relies on those parties “present” in daily
life. Because of this, fostering “ownership” to act on one’s own behalf
(empowerment) is essential from the outset in this type of treatment. Such
empowerment involves daily facilitators as well as affected parties. Whenever
possible, this process begins by including such parties in all management
decisions, since it is important that everyone knows and understands the
form and course of treatment, and the potential outcomes and the roles each
must assume.
Note, too, within my diagram, the overlapping areas between and among
life domains. At times in the earlier case vignette, the treated life barrier
focused more on the concerns of two-party relationships (e.g., between Patty
and Carol or Megan and Patty). Each participant in these dyads also served
as her own facilitator as well as assisting the other party. Carol needed to
speak less while carefully attending to Patty’s entire message. Such a focus
“aided” Carol in staying better connected with her mother (facilitating her
life barrier), but it also aided Patty in feeling equally valued in the commun-
icative exchange and wanting to participate communicatively (facilitating
Patty’s life barrier). Finally, as shown in this figure, at any point in time, not
all life barriers dominate preferred life choices and actions. Patty’s inability
to express her basic needs, for example, did not prohibit her desire/choice to
eat out in public restaurants. Although she couldn’t always be assured that
the waiter would know how to discern her menu choice, she knew that her
daughter would intercede if necessary. Overall that activity brought more
pleasure, of choice, than displeasure from this life barrier. Thus, it is where
these life domains (affected parties, life facilitators, and life barriers) merge,
shown here centrally in the overlap of all circles, that treatment becomes an
essential and viable remediation undertaking.
As a point of elaboration, here, treatment targets remain life-oriented . . . at
all times. They address enhancement of attitudes/feelings, personal and
social connections with others, and participation in chosen activities in daily
life. Such ends were not randomly selected; they represent, according to
noted social psychologists (Ryff & Singer, 2000a), those facets in life that we
all must possess to act freely and fully in daily life.
It is from enhanced participation in life, that psychosocial wellness fol-
lows (shown here as well-being). The latter, according to Ryff and Singer
(1998), entails having purpose and meaning in life, meaningful connections
with important others, autonomy, mastery of the environment, and self-
acceptance/love. These prime features of well-being, interestingly, may also
be essential to physical wellness (Ryff & Singer, 2000a, 2000b).
74 Lyon
Finally, the make-up or constellation of these life domains varies substan-
tially as a function of time post-injury (shown here as an upwardly arching
line labelled time post-onset). Such an approach to treatment relies on con-
tinuous assessment and prioritization of “current” life barriers, and which
of those are most amenable to modification, either through restoration or
circumvention. The continuing question to be asked is, “Which barriers if
reduced or minimized would enable affected persons to act on their own
behalf ?”. Management requires that we seek and develop effective and cost-
sensitive ways that permit affected parties to move in and out of treatment
over time, and to seek periodic “life adjustments” so-to-speak, that continue
to support optimal interactions with, and in, life.
COMPONENTS TO ENHANCING LIFE PARTICIPATION
A dominant memory of mine from decades ago, when people with aphasia
received hundreds of hours of restimulation/restorative language and
communication therapy, was the termination of treatment. No matter the
duration or success of treatment, when that moment arrived, it frequently
came with a sense of total disbelief and denial on the part of the affected
parties. It was not that they hadn’t “heard” that treatment would end, or
even the conditions under which this might occur. It was that they could not
imagine that such a moment was now, and that much, much more function
wasn’t still possible just days or weeks hence. Clients often asked, either
overtly or covertly, “How are we ever going to live life like this?”
Their plight and anguish dominated my thought too. Which of our prior
clinical gains mattered now? Which of them could be counted on in daily
life in the weeks and months ahead? What more might be done to make
those skills work and feel harmonious and good, given their life scenarios at
that moment? Thus, coming to grips with permanency of injury associated
with aphasia and stroke was inescapable . . . for everyone. Much for that
reason, the latter segments of my therapeutic journey have focused on this
process of remediation (making life work after communicative restorative
processes ended). In our literature, that phenomenon is better known as
“coping”. Because it is a concept and process entirely of its own, and because
our effectiveness in treating the disability of aphasia depends on our under-
standing and inclusion of coping, a brief overview follows.
COPING AND LIFE PARTICIPATION
In America, the permanent change resulting from acquired physical, mental,

or psychological injury is not often formally treated, but is left instead to
affected parties to sort through and decipher for themselves. “Chronic” is a
bad word in our healthcare system because if you cannot fix it, it is seen as
money wasted to attempt to teach people how to live with their unfixable
impairment. If there is any intervention at all, it typically takes the form of
either peer support groups or visiting a trained professional counsellor, know-
ledgeable about that impairment’s course and life consequences. Both of these
management aids may substantially benefit certain parties in re-establishing
meaning and balance to daily life (Elman & Berstein-Ellis, 1999; Luterman,
1991). However, it is important to note that, alone, these aids neither repres-
ent nor capture what the process of coping is, or what it might be. In fact,
“coping” is often interpreted as recognizing that you “are” your disability—
for example, that one is “an aphasic person”. This limited version of “coping”
casts a bias that is both inaccurate and unjust. Limiting coping treatment to
just peer groups or going to a counsellor reinforces the notion that its course
is a long evolutionary process, almost a passive state of maturationally growing
“to absorb” what life is and must be now, by “living with it”.
To me, our literature on coping only condones this view. Much of it
suggests that survivors must ascend a set of steps or stages like shock, denial,
anger, bartering/bargaining . . . leading ultimately to acceptance (LaPointe,
1997; Tanner & Gerstenberger, 1988) of permanent dysfunction. Not only
must affected parties “work through” these emotional barriers, their suc-
cess is viewed as tied to particular personality traits and/or skills involved
in overcoming prior life crises—temperament, hardiness, introspection, dis-
positional optimism, and locus of control (LaPointe, 1997).
This view of coping denies the therapeutic legitimacy of assisting people
idiosyncratically with what is not working at the moment. It also implies that
such endeavours are apt not to work, either because people aren’t “ready”
(they’ve not yet ascended the requisite adjustment steps to allow advance-
ment) or they don’t have the necessary requisites or “coping” skills to do so.
Nearly two decades ago, Lazarus and Folkman (1984), noted field psy-
chologists and research experts in the study of coping, wrote the following
definition of the coping process:
. . . constantly changing cognitive and behavioral efforts to manage

specific external and/or internal demands that are appraised as taxing or
exceeding the resources of a person.
(Lazarus & Folkman, 1984, p. 141)
What is most noteworthy about their definition, and later exposed through
their careful analyses of the coping process, is the following:
• Coping is best represented as an ongoing, active, interactional process

between person and environment, not a protracted, passive evolution
that requires months or years to determine its form, value, or outcome.
• Coping “ability” is not a personality trait. Certain prior tendencies and
perceptions about life may well influence its course and/or outcome, but
those, too, typically are modifiable with time, desire, and effort.
76 Lyon
• Coping is different from pre-established or automatized adaptive beha-
viours in life—things you have unconsciously learned to do or use un-
der “trying” conditions or circumstances.
• Coping is not to be confused with outcome! Just because daily life
doesn’t return to a glowing, radiant sphere of joy, happiness, and fun,
doesn’t mean that treatment isn’t yielding effective and sustainable gains.
At any point in time, one must ask instead: “How would life be had we
not made whatever adjustments (coping) we did?” If the living of life is
better at the moment, even if it remains marginal, coping strategies and
their enhancement have not only proven effective, but essential.
• The ability to cope at any moment in time does not necessarily predict
what might be possible in the future, especially if affected parties are
informed and aided in those very adjustment processes.
Given the earlier treatment example, my clinical sense is that almost all of
Patty, Carol, and Megan’s intervention centred around the support of cop-
ing. That is:
• There existed a specific set of external and internal life variables that
were taxing or exceeding their current resources to function optimally
or productively in daily life.
• Those breakdowns involved ongoing interaction among them and their
specific life contexts.
• Piece-by-piece, everyone involved worked through a series of barriers
that made their shared environments more comfortable, predictable and
productive.
• Outcomes did not turn life into a glorious, ideal, or perfect state of
being. However, they did yield a greater sense of value, purpose, and
meaning for all affected parties.
• Outcomes did not rely solely on any party’s prior maturation through a
series of adjustment stages, or their tenacity to “work hard” through prior
life crises. Maybe select parts of their past experience did help, but these
alone did not determine the course of treatment here. Instead, this coping
required a catalyst or catalysts—life enhancers—people willing to com-
mit time and effort towards assisting stalled life processes to work again.
Short of interventions that either avert the initial physical injury to the
brain or return damaged structure to its prior physical status (structurally
and functionally), it would be my opinion that augmenting the process of
coping represents the best therapeutic option for returning daily life func-
tions to their optimal levels “of choice” and engagement. More importantly,
as suggested earlier, it may well contain outcomes that move us closer, as
providers, to supporting sustainable, life-altering differences. Because “cop-
ing treatment” offers promise, I’d like to speculate briefly on where we
might need to look with future endeavours.
MANAGING “COPING TREATMENT” IN THE FUTURE
If we revisit the therapeutic outcomes of this case example, there is little

doubt, especially when evaluated by those treated (Patty, Carol, and Megan),
that such interventions enhanced daily life, making it more tolerable and “of
choice”. Yet, judged against a backdrop of normative life function (prior to
injury with aphasia), there remains much that is still viewed as “less” or
“undone”. If asked whether today’s picture of daily life compares favourably
with its pre-injury form, Patty, Carol, and Megan would answer a resound-
ing “No!”. Even with the benefits of this treatment, measured on a 10-point
scale of life satisfaction, post-treatment values fall at least 2 or 3 points lower
than pre-injury levels. It is true that the permanent loss of access to many
prime life domains, of personal autonomy and self-worth, and of ease of
daily operations is too great to “fix” through these methods, and perhaps
others, short of fully restoring prior function.
That said, however, there is another realm of “loss” that may be quite
modifiable through treatment. This is fortunate, in that it permeates, often
insidiously, daily life and its operations. I refer to the loss of intimacy in key
personal relationships. There is an expanding body of “normative” literature
on this topic—literature that is not about aphasia. The focus of this liter-
ature is on the importance of intimacy in life for all of us (Ryff & Singer,
2000a, 2000b; Ryff, Singer, Wing, & Love, 2001). Fundamentally, how well
we establish, maintain, and keep key relationships in life may well affect
our psychological, as well as physical, well-being. When communication
ease and access become chronically disrupted, as with aphasia, the form and
nature of intimacy is dramatically affected (Lyon, 1999a; Lyon & Shadden,
2001). Yet we know little of the evolving nature of such deterioration, or
what may help or not in assisting those affected in remaining connected.
This realm represents fertile ground for future examination and treatment.
RESTORATION OF LOST COMMUNICATIVE FUNCTION
When the prime therapeutic emphasis is on restoration of life functions, as

opposed to communicative functions, where does communicative restoration
fit in such a model?
The argument was made initially that communication subserves the medi-
ation of sharing and living life, and thus is integrally bound to those pro-
cesses. As well, presence of and access to communication often define who
we see ourselves as being. Other than looking at one’s face in a mirror and
saying, “That’s me,” how one sounds when hearing oneself talk is likely the
next associate feature in life that one identifies as oneself. When talking
has been present for seven decades of life, as in Patty’s case, and then is
suddenly removed, it is not strange that affected parties seek first and fore-
most its optimal return. The life participation model does not disallow that.
78 Lyon
It only maintains that we must target those life barriers (certainly disrupted
communication being a prime one) that preclude daily involvement at any
point in time.
For some parties, the duality of treating both life function and communic-
ative function appears to be a dichotomy. How can one target adaptive life
strategies (coping) until one is certain that restorative efforts (communic-
ative) have run their full course? Why work on something that may not be
needed, and something that feels terribly foreign and uncomfortable to their
way of life and your accustomed way of offering service to clients? Only
after permanency of injury is well known, internalized, and somewhat ac-
cepted, may the latter even seem justified. Although, in my experience, this
has usually been true, the origin of this type of thought seems embedded in
a rather restricted sense of what permanence of injury represents and how
we, as therapists, elect to speak about it initially, i.e., immediate following
onset. It is essential that such a conversation occur, not in any absolute
terms but in relative ones. Since we’re likely not to “know” the absolute
limit of functional return for years (not months), and since such functional
return (especially beyond the first 8 to 12 months post-onset) is apt to be
gradual at best, working on current life forms and functions early post-onset
is not wasted effort or time. It is, instead, essential to building an optimally
strong foundation for self-sufficiency and autonomy in the years to come.
Augmentative life systems do not interfere with augmenting disrupted com-
munication systems, but they do provide a basis to live life should current
function remain unchanged, and provide meaning to attempts to use aug-
mented communication systems. They also set the stage for positive coping
with what “is”, even when what “is” changes.
LESSONS LEARNED EN ROUTE
Now, having spent some time recounting what I have learned about treat-
ment en route to the journey’s conclusion, let me attempt to share some of
what I have learned from some special fellow travellers along the way. One
of those most important “teachers” was a kindred soul, a golfer.
Over the past couple of years, I’ve begun playing golf more regularly.
Nowadays I attempt to get out for several hours, four or five times per week,
usually in the early morning. Some of my friends and colleagues may won-
der, how can one attend to this, to that degree, and still be productive at
work? The truth is, I learned this lesson from a client of mine (a man with
aphasia). I consider this gentleman more a mentor than a patient. He ran a
highly successful insurance agency with multiple offices in multiple cities
and multiple states. However, his first order of business, each day, from the
age of 19 until he suffered a stroke some 60 years later, was 18 holes of golf.
That activity was not just about play or fun, although it was both of those.
It was an essential part of daily life—it defined who and what he was and
wanted to be. Furthermore, he was not an excellent golfer . . . ever, although
he was very good. And this didn’t matter to him! He sought this experience
because he immediately became “lost” in the act of doing it, and he didn’t
really care about its outcome. He kept score and he wanted to shoot a good
score, but even that was not his prime motivation. He loved the process
and being in it, a phenomenon in life more formally known as “flow”
(Csikzentimihalyi, 1990, 1997).
Now, part of getting “better” at golf, even at my age of 56, seemingly
involves taking lessons. I’ve done that intermittently. Recently, I was out
on the practice range with a golf pro because I wanted him to “make me”
more adept at executing the golf swing, and he was there because he felt
he possessed the skills to do just that. To begin, he asked me to hit several
balls and then he began telling me what I needed to change in my swing to
become a better golfer. I could tell from his assessment that he was well
trained and well intentioned. He definitely knew what a proper golf swing
entailed, and what of my swing needed correction. I could tell, too, he had
thought about effective ways of sharing such information with his clients.
So I began attempting to insert the suggested changes into my swing, and
have succeeded to some lesser degree than instructed, although I will con-
tinue to try.
To my knowledge, though, this instructor never alluded to the fact that
there are hundreds of thousands of ways of hitting a golf ball, or how “my
swing”, as it existed at that moment, might be maximally improved by minim-
ally changing something within that structure. Nina Simmons-Mackie has
long asserted that whatever we “do” in aphasia treatment has got to “fit”
within existing ways of life function or operation for it to habituate (Simmons-
Mackie & Damico, 1997). Real change has got to become potentially auto-
matic in function. Accordingly unless we bring comfort and ease into the
desired shift, whether involving a golf swing or living with permanent differ-
ences in our communication system, it is apt not to work in real life.
Over 30 years, I’ve been taught this very principle repeatedly: We need to
be less concerned with complete repair of broken parts—unless of course,
those functions are restorable—and more concerned with automaticity (ease,
comfort, and pleasure) in life. To extend the lesson my clients have taught
me, and that was well described by Simmons-Mackie, although my golf
swing is apt never to look or feel like that ideal computer-generated model,
I need to consider what I might change of what’s already there, and what
could, with time, become automatic.
Taken a step further, automaticity may mean “not needing” to change
anything—unless of choice. Ram Dass, whose popular message in 1971 was
“Be Here Now”, recent completed another text, Still Here (Dass, 2000).
Dass began writing a book on natural ageing, but prior to finishing, suffered
a stroke that left him with aphasia. He stated in his book that this real-life
event and experience gave him the ending that he was seeking. It made him
realize that he wanted to be free to experience any age-related event in life
80 Lyon
fully and completely “as is”. His notion was that having aphasia was not a
penalty or bad misfortune; it was simply a natural part of his life course and
process. As such, he didn’t want therapists telling him, “You’ve got to get
better” by learning to do such and such. He wanted time, and the freedom
to learn, from whatever this turn of events had brought. He remarks that he
spoke out frequently in life before this occurrence, but, because speech and
language were not now readily at hand, he had been forced to listen more,
and was learning from the experience.
To conclude, I feel that aphasia treatments need to be more life-oriented
and life-altering to endure. They need to “fit” with the life schemas and
agendas of those affected. They need ultimately to make those who receive
them feel better about themselves, their lives, and their connections with
others. Certainly, addressing disruptive communication is essential, both
directly and indirectly. But we must place our first priority on what in life is
most desired, what about that that is most obstructed or interfered with, and
what of that might be changed. Finally, we need to ask ourselves, “How do
we do all these things and have them fit comfortably into what exists rather
than remake what doesn’t?”
My journey has taken me to this juncture in the road. The path ahead
has been “prepped” with an LPAA model, but the landmarks are yet to
be established before paving begins. My hope is that, as speech-language
pathologists, we will be instrumental in this future course, this next journey
in living, and in enhancing lives of those with aphasia.
REFERENCES
Byng, S., Pound, C., & Parr, S. (2000). Living with aphasia: A framework for therapy
interventions. In I. Papathanasiou (Ed.), Acquired neurological communication dis-
orders: A clinical perspective. London: Whurr Publishers.
Csikzentimihalyi, M. (1990). Flow: The psychology of optimal experience. New York:
HarperCollins Publishers.
Csikzentimihalyi, M. (1997). Finding flow: The psychology of engagement with everyday
life. New York: HarperCollins Publishers.
Dass, R. (2000). Still here: Embracing aging, changing and dying. New York: Riverhead
Books.
Ehrlich, P. R. (2000). Human natures. Washington, DC: Island Press.
Elman, R. J., & Berstein-Ellis, E. (1999). Psychosocial aspects of group communica-
tion treatment: Preliminary findings. Seminars in Speech Pathology, 20, 65–72.
Fougeyrollas, P., Cloutier, R., Bergeron, H., Cote, J., Cote, M., & St. Michel, G.
(1997). Revision of the Quebec Classification: Handicap creation process. Lac St-Charles,
Quebec: International Network on the Handicap Creation Process.
resources for training conversation partners. Aphasiology, 12, 816–831.
LaPointe L. L. (1997). Adaptation, accommodation, aristos. In L. L. LaPointe (Ed.),
Aphasia and related neurogenic language disorders, 2nd Edition (pp. 265–287). New
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Lubinski, R. (1981). Environmental language intervention. In R. Chapey (Ed.),
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& Wilkins.
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(Ed.), Language intervention strategies in adult aphasia (pp. 269–291). Baltimore:
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(2nd Ed.). Boston, MA: Pro-Ed.
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aphasia. Aphasiology, 9, 33–50.
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adults and their prime caregivers in natural settings: A use model for treatment.
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(pp. 299–324). Austin, TX: Pro-Ed.
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ment of aphasia (pp. 203–239). San Diego, CA: Singular Publishing Group.
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confronting aphasia. In L. Worrall & C. Frattali (Eds.), Neurogenic communication
disorders: A functional approach (pp. 137–161). New York: Thieme.
Lyon J. G., Cariski D., Keisler, L., Rosenbek, J., Levine, R., Kumpula, J. et al.
(1997). Communication partners: Enhancing participation in life and communica-
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pp. 297–315). Baltimore: Williams & Wilkins.
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and normal adults. In T. Prescott (Ed.). Clinical Aphasiology Conference Proceedings.
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82 Lyon
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5 Context, culture, and
conversation
Claire Penn
We inhabit the great stories of our culture. We live through stories. We are
lived by the stories of our race and place. We are, each one of us, locations
where the stories of our place and time become partly tenable.
(Mair, 1991, cited by Evans, 2002)
This is my story. In this chapter I will describe the multiple influences that
have directed me forward as an aphasia therapist—the role of mentors, life
events, geographic context, and pure serendipity. I will consider the phases
of my own development in relation to some ideas about aphasia therapy and
highlight some lessons learned, using as illustration the personal narrative of
a person with aphasia. Finally I will offer some advice to the young clinician,
which I suppose is one of the indulgences permitted in this phase of my
career!
The context in which I have done most of my research and therapy has
been a very important influence on my development as a clinician-researcher.
As a South African I was often insecure and envious of my American and
European counterparts who (seemingly at least) had the benefit of team
interaction, resources, status, and opportunity to take part in large-scale
funded collaborative studies. My graduates often moved overseas and into
the supportive arms of a distant network and my life as an aphasiologist
became increasingly reliant on aeroplanes. By contrast I perceived my own
context as one that, like the Avis advertisement, forced me to “try harder”
and to evolve more ecological approaches to assessment and therapy by
having to:
• rely on and develop my own neurological and neuropsychological com-

petence in issues of diagnosis;
• often operate independently of a team and understand the importance
of working in a transdisciplinary manner;
• address issues of rapid turnover and quick effectiveness because of short
hospital stay and no opportunities for follow up;
• work with a range of interpreters, assistants, and extended families;
84 Penn
• adapt and create assessment and therapy techniques in a range of ways
to address the cultural and linguistic diversity of the caseload.
PHASES
The theme of this chapter is phases: the historical phases of aphasia therapy,
the evolution of an approach to aphasia in myself, and the phases of recovery
in the person with aphasia. These are certainly not separate constructs and I
will argue that the therapeutic relationship is an exquisitely attuned interface
between the phase of recovery, the personal phases of the person with apha-
sia and clinician, and the context of the interaction, defined historically and
socio-politically.
One of the reasons that I chose speech-language pathology and more
specifically aphasia therapy as my career was simply that I did not know what
I wanted to do, and this career seemed to offer an opportunity to pursue my
interest in language and art, in medicine and science, and to work with
people. This turned out to be a happy motive and choice. In my career as a
therapist I have had brief diversions into other areas, but it has been in
aphasia that I have found the most growth and personal development; as a
clinical coach it has been with aphasic clients that I have seen the most
development in student clinicians; and with my colleagues working in this
field, I have had the most meaningful professional interactions.
MY DEFINING MOMENTS AS AN APHASIA CLINICIAN

AND THE LESSONS I HAVE LEARNED
While I was still a student, my crusty neurology professor declared one day
during a ward round that speech therapy was as effective as chicken soup to
the stroke patient—benign and doing no harm but of no proven good. I was
profoundly indignant yet could not really at this stage extend a convincing
or scientific argument to the contrary. I resolved that I would take up his
challenge and I did so for the next 25 years! I met him again, long retired
and living in Australia, and had a delightful lunch with him, thanking him
for shaping my career in the way that he had.
This phase coincided with the harsh and startling reality of my uselessness
in the context of Baragwanath Hospital in Johannesburg (the largest hospital
in the southern hemisphere) where I did my hospital clinical experience as a
student. I was allocated an aphasic client who spoke six languages—none of
them my own. He had TB in addition to aphasia and was feeling very ill
indeed. His family could not be contacted. He was in a ward of fifty patients
many of whom did not have their own bed. Nothing I had read or learned
prepared me for this experience and the harsh words of my neurology
professor were ringing true. I remember clearly what I did with this man.
5. Context, culture, conversation 85
I bought him a pack of cards and a packet of cigarettes and played a game
outside in the gardens of the hospital with him, while he smoked illegally.
He was discharged shortly thereafter and I felt justifiable guilt and doubt
about my role, and choice of career. (I also incidentally nearly failed my
hospital practicum.)
But this was in many ways a defining moment, because it helped me under-
stand the unique challenges of my context. When I became a clinical educator,
this experience made me determined to provide adequate skills to my students
for addressing such a challenge (Penn, 2000). Traditional assessment and
therapy techniques had proved irrelevant to me, I was poorly educated in
cultural aspects. I wished I could speak this man’s language and understand
what mattered to him. It provided me with a new respect for those disciplines
(such as anthropology) whose methods include observation, and a growing
awareness of how irrelevant I was in the grand scheme of things.
The choice of pragmatics as my field of endeavour combined my intrigue
in context with my first love, linguistics. This was inspired by talented lin-
guistics lecturers and also by my experience as a British Council scholar
working in England with Maggie Hatfield, Steven Levinson, and David
Crystal. I had a wonderful time in Maggie’s department. On Thursday
mornings her department was a busy and bustling activity centre which was
attended by a large number of persons with aphasia from all over the
county—they came for a range of therapies, group and individual, they came
as volunteers to aid in the research of some of the famous names at Cam-
bridge University, but mostly they came to “hang out”: to drink tea and to
meet together. It struck me that this was a healing and bustling creative
warmth which reflected the personality of the person in charge. Even the
tedious reading of a list of non-words on a set of little cards did nothing to
detract from the moment.
It was during this time that I realized the link between clinician and
researcher and that the most mundane of daily activities, if described and
documented with careful precision, can form the basis of relevant evidence
for clinical intervention.
When I had completed my doctoral research I spent an influential year in
the US working with “big names” in aphasia, including my mentors Carol
Prutting and Audrey Holland, who humanized my therapy. From Terry
Wertz I learned that you can prove scientifically that therapy works better
than chicken soup!
I came home fired up and helped start the Stroke Aid Society in Johannes-
burg, which is a volunteer-run group providing opportunities for persons
with aphasia to meet socially and to receive therapy. One of the persons
whom I saw in therapy was a very special man, LC who on the second
anniversary of his stroke took his own life. I have written elsewhere about
this case and its impact (Penn, 1993). In therapy we were working on goals
of autonomy and reasoning. His return to work proved a debilitating event
and his changed role in his family was more than he could bear. Despite
86 Penn
what I thought (and the tests affirmed) was an excellent recovery, this un-
expected act made me seriously reconsider my role as a clinician.
At his funeral one of his family members said something like: “Let us
remember L for what he was before the stroke.” I had only known him for
the two years after the stroke and loved him for the intelligent unique
person that he was. I was puzzled by the evident fact that society assumes
there is no dignity and quality of life possible after aphasia, and I knew that
this is just not so!
This was a very important milestone for me. I could not make sense of it
at first. I went for counselling with professionals at the Hospice Society (a
wonderful organization for assisting those coming to terms with terminal
disease) and immersed myself in readings about autonomy and burnout. It
led me to change very drastically the way I teach the aphasia course, and I
now teach a substantial course on ethics to my students which includes,
among other things, the topics of abortion and euthanasia. Such topics
demand a process of coming to terms with one’s own perspectives, under-
standing the origin of others’ perspectives, and examining routes of inten-
tion, action, and consequence—all again very critical in clinical development.
For several years mid-career I was seconded by a research institute to
explore and develop a sign language dictionary. While this was far removed
from aphasia it also contributed directly to my aphasia track. I became
aware of alternative views of the disorders that we had studied as students.
Immersed in growing advocacy movements, issues of esteem and empow-
erment as well as huge political changes, a cultural rather than a disability
perspective emerged from this experience.
The socio-political transition that has happened in my country over the
past ten years has been nothing short of a miracle and suddenly it became
clear as never before that my role as an aphasia therapist was to fight tooth
and nail amidst changing health policy and the redistribution of resources.
No effective therapist can be neutral politically, and advocacy is a pivotal
skill to learn given the profound impact that the social economic and polit-
ical context has for those with illness. (For more on this point, the writings
of Farmer, 1999, provide great clarity and insight.)
THE NARRATIVE JOURNEY OF VALERIE ROSENBERG
After my sortie into sign language, I gradually increased my amount of

clinical work. In 1999 I shared with a British audience the recovery diary of
Mrs R and how my own thoughts about therapy resonated with her insights
(Penn, 1999). This was a personal reconstruction of a therapy experience
with Mrs Valerie Rosenberg, whom I first saw for therapy in June 1998.
From the outset, therapy was very much a joint enterprise and this paper
described the evolution of the content and process of therapy from the
perspectives of both therapist and client.
Detailed collaborative narratives of this nature are few and far between
and become possible only when the powerful subjective experience of the
client is accessible. Being able to self-reflect, to be meta-linguistic or meta-
cognitive hopefully unravels some of the pieces that make up the therapy
process and provides insights for other therapy dyads. I chose this particular
client to describe because:
• Her symptoms were mild enough for us to access her personal insights.
As an accomplished author, despite what she perceived as severe limita-
tions imposed by her condition, she was able to describe her subjective
experience with great clarity, honesty, and sensitivity using powerful
metaphoric language. I have drawn liberally on her own quotations (in
italics) and have, where necessary, provided commentary on her own
experiences.
• She was very highly motivated to improve her abilities, and persist-
ently addressed her difficulties. Her discipline in therapy as well as her
detailed, honest, daily self-reflection provide a rigorous tracking of the
evolution of recovery.
• Her initial cluster and combination of symptoms (including visual prob-
lems, organization, planning, and memory difficulties) make some of the
therapy techniques and processes very relevant, not just for the person
with aphasia but for other categories of cognitive and communication
difficulty that we encounter as therapists (such as those caused by closed
head injury) and highlighted for me that at the mild end of the severity
continuum it might appear limiting to differentiate communication prob-
lems by aetiology.
Valerie insisted on keeping my notes as an adjunct to her diary and after a

period of time I was able to recognize the patterns and process of what we
were doing and was inspired to put them to paper. As we did this, I became
aware of how many different perspectives of aphasia are required to understand
the whole picture. At times, the focus had to be driven by strictly neurological
considerations, at others an insight into principles of linguistics and psychology
was required. A series of distinct phases of recovery emerged and each phase
seemed to demand a very different balance of contributing disciplines.
Specifically, her insights help us to answer some of the questions that
should be paramount in the aphasia therapist’s mind:
• What does it feel like?

• What do we know about what works?
• What should we do?
• What should we not do?
Valerie Rosenberg developed aphasia after surgery for a non-malignant

tumour. The midline tumour was accessed through the left temporal lobe,
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leaving Valerie with a cluster of symptoms which included a mild aphasia
with receptive difficulties and expressive problems, manifesting in word-
finding difficulty and poor topic control. She also had visual problems,
memory and organization problems, emotional difficulties, and distractibility
and fatigue.
Prior to her surgery she was a very active and intellectual author and
playwright who had been nominated for two literary awards. She had a busy
and enriched social life, was well travelled, and had many hobbies. She had a
very well-established support system of family and friends.
Her own words describe her premorbid life:
I had reached my seventieth year privileged to be able to look back on What the
heck—It was a golden life . . . one lucky lady
Her narrative was marked by several milestones.
The Beginning
The neurological event was a terrible one for her. Once again, her own
words are stronger than any other:
My first recollection after the operation was . . . well look I’m not really sure
that’s what it was. It was more a feeling.
I was hovering above my bed . . . from the wall, watching myself in my blue
prison pyjamas.
Time was warped or it stood still as though there was no such thing as passage
of time, I think.
Like being in an egg.
Or a bubble
I didn’t like it
Was this delirium?
An out of body experience?
Or what?
Slowly I began to work my way out
The various symptoms she experienced were described in early and later
diary entries. Of her visual problems she described the following:
I remember that first morning when I tried to confirm my new world in

hospital, I asked for my spectacles and it showed a world that was definitely
skewed with a large crack down the middle like that of a broken mirror.
What is left of what I can see with my bad eye is like looking through a funnel
and what is left of what I can see with my good eye is scarily reduced. (will need
to speak to Claire about how not to injure myself). My first though was Yikes!
He did the wrong operation. Nobody tells you about this.
Still tunnel vision or funnel visions. Left eye very much narrowed. Warp like
a Picasso plate. Not constant. Shifting
I see only a segment at a time. Marry this to an inability to retain what I see
in my mind’s eye and my garden planning is almost insoluble.
Of her expressive difficulties:
I feel there is a “sticky gap” in my mind.

Aphasia: the medical term for my post-surgery condition is like trying to wade
knee-deep through melted toffee. Sticky.
Cognitive symptoms:
As I start my journey out of my bubble I list the things that make me feel
muddled
Too much. Of anything. Like too much on my plate. Or too many choices of
dishes. Too much newsprint. Especially in the Sunday papers. It’s like what’s
left of my brain has a problem coping with too much in too little space.
ideas are spider web thin
My thoughts still seem tangled and I still feel as though there is a piece of my
head Dr S neglected to put back.
Affect:
This has been a horrid few days with increasing insomnia, lack of control
both physically and emotionally, crying jags and sudden bouts of temper. And
TERROR
It doesn’t feel like me here inside this strange person’s skin and I wish someone
would please come and help me to get out. It’s so scary.
If the radiologist was delighted the tumour is satisfactorily excised, satisfactorily
for whom?
My philosophy for therapy with a client of this nature has evolved over
the years and has been based on a number of principles. If one were forced
to label my “approach” under an umbrella term, it would be “pragmatic”,
based on the critical principles of assessing and treating language within the
context of the client, attending to holistic needs, working on the compensa-
tion, and adapting to dynamic and transactional processes, particularly through
conversation.
My belief is that communication transcends and mediates almost every
aspect of living and that one’s role as a communication therapist cannot
90 Penn
therefore be restricted to commonly used techniques and processes. Attune-
ment, flexibility, and empathy—the essential ingredients for positive therapy—
became so easy in this particular therapeutic experience possibly because, as
for Valerie, my business is words and I revel in their structure, and their role
in conveying thought and emotion in healing. I believe that the subjective
world of words defies any attempt to systematize and standardize a therapy
approach, and that meaningful therapeutic interaction with and around words
resonates with complexity and potential. Reflective thinking becomes the
crux of the therapeutic process for both client and therapist and enables a
negotiated partnership linked by communication.
The goals of treatment that we derived together and which seemed largely
unspoken were to restore meaning to her life, to reconstruct her dignity and
capabilities as an author, to “fake it” if necessary to the outside world while
coming to terms with possibly permanent sequelae of the surgery. As a very
proud person, she desperately wanted to demonstrate that she was in control
of her recovery, and sought strategies that would allow her gradual and
careful adaptations towards resuming her old life. For the purposes of this
chapter, I will focus on Valerie’s response both to therapy as a whole and to
the specific therapy procedures we employed.
How long have I got I wonder before we know whether I’m permanently brain
damaged? I mean is this permanent or what?
And what happened to my bargain with God.
Therapy was divided into some distinct phases which emerged as a func-
tion of the process of recovery and various environmental factors. Below
using mostly Valerie’s direct observations, we see how she gradually learned
to live with aphasia.
Phase One: Finding the way out of the bubble

The first phase of therapy started as soon as Valerie returned home, and
much of this therapy was observed by a caregiver who was closely involved
in everyday routines and who from time to time, between sessions, phoned
me and sought clarification and guidance. This phase of therapy lasted about
two months.
So of course it was home. It just didn’t behave like it
A structured routine was established, Valerie preferring to work for several

hours in the early mornings to accomplish her goals. Her two main props were
a diary which she kept from the beginning and then eventually her old friend,
the laptop computer on which she had produced so much creative work. This
step was a difficult one to take initially and was fraught with technical challenges
and uncertainty, but she later documented it as a lifeline.
It lines up your thoughts. It puts things in order.
My computer and by extension my writing remain a lifeline and hopefully my
way back to me.
My word processor is my best friend.
Yesterday the power went off and it was restored and I tried to recapture what
I had written for my diary only it was gone from my memory. Like a chunk of
life all leaked away. That’s why I need to get it down fast. . . . encouraging me
to open a vein.
The medium of therapy was conversation, as “Conversational language

reflects the natural workings of the mind more closely than language of any
other kind” (Chafe, 1977, p. 52). Valerie’s insights into the impact of her
problems on conversation are seen clearly in her observation:
With my comprehension always behind everyone else’s the keenest rapier grows
dull, when it takes too long to thrust home. By the time I am ready I no longer
grasp what seemed funny before I lost the point. That currency of life and food for
the source bites the dust and the magic of humour vanishes like mist in the sun
Much of therapy comprised the development of little “one-liners” which

were intended to act as verbal mediators for everyday coping and for helping
to re-script some of her problems (see Table 5.1). They drew on some of her
premorbid strategies and work habits and often targeted a number of her
difficulties at the same time. For example the phrase “keep grounded” was
originally used as a reminder to stay on the line when practising writing, and
was aimed to counteract the impact of the visual difficulties. However, it
became a metaphor for much more than this—being used as a reminder to
stay on track and in direction when facing some of the chaos and distractions
of everyday life in tasks other than writing.
Management of the feelings and depression surrounding the experience
formed an important part of therapy. Inevitably, as time went on, there were
increased feelings of depression and the dilemma for both of us as to how to
handle it is reflected here:
To block out the depression or not to. Last week after the scan I had two days
when I just cried and cried. First we tried Claire’s way. To accept the feeling as
something positive and live through it. Go with the flow. I tried.
After commencing anti-depressant medication:
It certainly helped but I felt so stupid. As if I’d taken a step back into the fog
from which I’m trying to struggle free . . . I need my clarity of thought as much
as possible. But I also need not to be overwhelmed by misery. It seems a hell of
an equation. The way for me is to block these scared sad feelings with work.
Always has been.
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Table 5.1 One-liners used in therapy with Mrs Rosenberg
Visual difficulties
• Use large print books
• Remember the left visual field
• Draw and attend to margins
• Use a ruler
• Work on an uncluttered surface
• “Keep grounded”
A number of these strategies were developed in consultation with an

occupational therapist. Despite opportunity to have individual occupational
therapy, Mrs Rosenberg indicated a preference to have only one therapist
and I therefore attempted to incorporate some well-established techniques
for visual field and perceptual difficulties into therapy with her.
Organization and planning

• Talk and then do
• Revise and check your work
• Diary (plan, write and check)
• Set up
• One thing at a time
Organization and planning difficulties pervaded most of Valerie’s life and pointed
to some difficulties with executive routines. Again, in consultation with an
occupational therapist and a neuropsychologist, we targeted initially everyday
activities (such as dressing or gardening) and analyzed the components of various
tasks. Valerie found that planning (either by means of a diary or by verbally
anticipating the stages of a task) considerably helped the pacing and sequence of
acts. Her diary of events became at the same time a retrospective analysis and an
important planning platform.
Memory and reading

• (Who? When? Where? What?)
• Research and discuss, then write
The primary materials used in these activities were novels, TV documentaries, films,
magazines articles, and newspapers. Valerie was encouraged to interact with the
texts read by asking specific questions (Who were the participants? When did
this take place? etc.), if necessary talking about them and then trying to write
a response to each question. Such activities encouraged both memory and
organizational strategies and were formalizations of well-developed premorbid
analytic strategies which she had used as author and playwright.
Conversational one-liners
• Let the words serve the idea
• Visualize
• Beat about the bush
• Strategies of delay and repair
“I’ll call you back”
“I need more time to think about that”
“Please say that again”
• Catch your ideas in a net (mind mapping)
• Don’t repeat yourself
Using conversational opportunities we together identified some of the strategies

that helped organize and control both the transmission and reception of ideas.
Many of these ideas stemmed from my work with other persons with mild aphasia
and specifically from the ideas of Joseph Wepman who was a strong protagonist
of “thought therapy”. I encouraged Valerie to focus on the idea rather than the
specific words (through techniques such as visualization) and we used some
mind-mapping techniques (visual displays of main content nodes) to help her link
content, and to compensate for memory lapses. She became aware of the impact
of some of her word-finding struggles and her digressions and the importance of
staying on topic. She also developed an appreciation for circumlocution (in the
presence of specific word-finding problems) and of compensatory of delay and
repair.
Coping
• Avoid distractions
• Chill out
• Go with the flow
• Fake it until you make it
• Keep energy and strength for what is needed
• Do one brave thing each day
As life situations arose, we analyzed Valerie’s response to them and what worked
and did not work. We soon discovered that there were certain contexts (places
and interlocutors) that were to be avoided and that she was better at certain times
of day than others. Strategies for coping with everyday challenges evolved over
time. She soon learned to keep her space and her plans for each day simple and
to avoid people and tasks that upset her. Using some teenage terminology from
her grandchildren, “Chill out” and “go with the flow”, proved very helpful. She
discovered that much of her success relied on attitude encapsulated in such one-
liners. Amusingly we both became hooked on some of the self-help books around
at the time (some prescribed by her daughter) and we both benefited from some of
these mantras.
Phase Two: “So this is the real world bit by

bit”—Problems and solutions
A second stage of recovery started when Valerie left on holiday with her
family. This lasted about four months and the process was carefully docu-
mented. I was available by telephone for consultation and the caregivers
were briefed to continue with some of the activities on which we had worked
before. This phase was the one in which Valerie began to encounter real-
world challenges and devised many of her own strategies for coping.
Valerie continued to document in detail her main difficulties, some of
which were resolving, as well as her solutions to them. Some examples:
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I see only a narrow segment of a page at a time.
My third dimension is missing. If I close my good eye, I lose my third dimension
depth. And if I close my bad eye the whole scene jumps to the right, recedes
farther away and loses definition. Al this is quite dizzy-making. You better
believe it.
I try to choose big print or print that breaks in the middle of a page. Also I need
a ruler to keep the lines in position or they seem to float. I see that I have of
brightly coloured ones so that they are unlikely to get lost.
Don’t’ trust my spelling and words often look wrong even when they’re correct.
Who there’s a double letter, I have to count or ask someone if I’ right. I know
I should use a dictionary but every option is at the cost of something else time
wise and concentration wise.
Reading is really difficult so I have to choose (what to read) carefully. Need to

express time telegrammatically. A sketch of the clock face as opposed to the
digital system. But if I want to meet a friend to walk at seven am I get anxious
and start waking myself at five.
I am marooned without my diary. I have no memory in my head

“the act of physically making my thoughts visible and audible puts them in
a shape I can deal with. The abstract thought has no reality I can grab. Now
I know why elderly people talk to themselves.
With increasing social opportunities, difficulties with her personal rela-

tionships began to emerge and become important.
What is this terror? It haunts me and makes me really act like someone who’s
lost her marbles. I want to behave normally enough to “fake it until I make
it” . . . and then along come the weepies.
I should grow up. But how do I trust? And how do I steer? It’s such a “what’s
the use?” world right now.
I’ve learned to pace myself, simplify and dress real fast. And it is still better if
I restrict myself to safe gentle people but I do miss people. It’s lonely here.
Phase Three: Taking stock

Valerie returned from holiday and to regular therapy. This third stage seemed
to represent a period of consolidation in which we worked specifically on
problem areas while extending and discussing strategies for coping and set-
ting goals for the future.
Valerie’s presenting problems at about eight months since onset included
difficulties with attention, persisting visual problems, and reading and
conversational difficulties. Many of these problems could be subsumed as
difficulties with executive functions and were worked on through a series
of executive routines such as suggested by Ylvisaker and Feeney (1998),
some of which are reflected in Table 5.1. Her writing played an increasingly
important and satisfying part of her life and she also began to show increas-
ing curiosity into the neurological and psychological mechanisms and expla-
nations for the difficulties she was having.
The brain is a wonderful contraption.
The important issues at this stage appeared to be those surrounding social

and relationship issues. Although she indicated that she “did not have many
friends. I always wrote” she was able in the months of her illness to see who
was good for her and who did not help.
My solitary cut-off life is one of the worst aspect that has happened to me.
She tried to reclaim some of the power and status she previously had in
her family. This proved complex and required a re-negotiation of roles. She
expressed a feeling of being “defenceless” and accurately and sensitively
recognized what she called threats to her goal of renewed autonomy and
dignity.
G shared with A few intimate sympathetic looks of fellow sufferers lumbered

with aging relatives not right in the head. I hated him for his insensitivity and
smugness. Make that present tense. And there’s nothing I can do.
Dear G It is hideous to see everything through this crooked fog, but it is also
hideous to see how badly we each need to escape. And what a hideous prison
I have become for you. It’s a lousy trick for God to have played. You deserve
better and I wish I could make it better.
Coping with these aspects formed the next stage of therapy and led to
a referral to psychotherapy for a period. My own time commitments,
but more important an awareness of my own boundaries, led to this referral.
My earlier experience with LC and my awareness that depression is a
major, recurring, and potentially dangerous force, particularly in a person
with great insight and at certain transitional phases of recovery, prompted
this referral. Both of us became aware that the symptoms we had worked
on together (including visual, language, and memory aspects) had re-
sponded well to the techniques that we had used. We both acknowledged,
however, that though there was more work to be done, the impact of
some of the emotional and relationship aspects was more pervasive and
important.
Valerie continued to keep in touch and sent me her chronicle when she
completed it. Her comment at the end of therapy with me said a lot:
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It has been a great privilege to have you guide me through this journey. Your
empathy and inventiveness have made all the difference between what was left
us to work with and our reaching for the me I used to be.
Phase Four: Two years down the line

Valerie ended her chronicle with an anniversary:
I don’t like life through the cracked looking glass . . . Thoughts out of synch and
unrelated words to express them.
And it scares me that I may not write again. Because practical or not, that’s
still how I define myself. A writer with the need to write as urgent as the need
to breathe.
Here an identity crisis rears its head. Because of my brain is impaired so is my

mind. This assault on my soul has damaged that part of me that makes me.
But I have friends,

Grandchildren,
Puppies
And a garden, . . . and J is teaching me to photograph with the camera he

helped me choose.
That magical weekend the trees just burst into blossom and the bulbs into
bloom. Those two days were the happiest I’ve had since surgery.
So let’s shake the kaleidoscope and see what new patterns form:
This surely reflects a level of transcendence and moving beyond “crying

at the moon” (Valerie’s words) and indeed, “beyond aphasia” (Pound, Parr,
Lindsay, & Woolf, 2000). In going through her chronicle she has moved into
partial acceptance, a recognition of what she has and what she can do and
the challenge that her life presents. The way ahead is marked by significant
events—working towards goals and establishing the human pattern of cycles
and celebrations. Her narrative at this point appeared close to that described
by Frank (1995) as the “restitution narrative”, demonstrating a forward
perspective and contrasting so markedly with that of Mr C at the two-year
milestone.
How was this therapy different from what perhaps could be termed more
traditional aphasia therapy? I never once did a standard test as I feel it is not
necessary to highlight the deficit. Conversation, observation, and discussion
with Valerie’s family provided most of what I needed to know. I held hands
and I tried to listen to the subjective world of this person, and we jointly
solved the problems. Often I was on the wrong track and she told me so.
Often my ideas were elaborated by her and lifted out of the mundane to
more creative extensions.
I was her speech-language therapist, but also at times assumed the role of
psychologist, confidante, occupational therapist, daughter, and friend. While
being acutely aware of my own professional boundaries, in this particular
case, the holistic nature of therapy required that at times I put on the hat of
others. I know that I would have dealt with this in a different way at an
earlier phase of my professional development, and no doubt I will handle
things differently in the future. The special connection that we had, and her
clear communication about what she needed, as well as the intellectual inter-
ests we shared, made the process a natural one. I sought supervision on this
case (as I do on many others) and I became very aware that when one is
dealing with life participation issues, no one discipline has the answer. The
client herself called the tune, and the phases that emerged were probably
unique to her. I felt that I learned a huge amount from Valerie Rosenberg
about the timing and nature of therapy. There was a mutuality of purpose
and I believe a mutuality of growth for us both. I would prefer to see my
role as that of facilitator rather than therapist, and I believe that each profes-
sion and individual who focuses on such participation issues may have to act
in a transdisciplinary way to remain truly centred on what is relevant.
The distinct phases became very important—and the intermediate one, in
which she had no direct contact with me, fortuitously created an opportun-
ity to practise what was discussed in therapy and to measure its impact. Her
careful documentation served in this case as a profoundly useful “consumer-
driven” quality check of therapy techniques.
The hallmark of this therapy was its interactive and dynamic nature. The
topics, methods, materials, and props were established naturally and spontan-
eously as each session evolved. We stayed on track and yet the sidetracking
became sometimes potent and alluring and enriched our interactions.
We can never hope fully to reach the reality in our clients’ minds and to
understand the subjective reality not only of aphasia but also of the many
symptoms that follow brain damage. However Valerie Rosenberg’s powerful
account and the therapy process has provided a beautiful window on cour-
age, the human spirit, and the power of words, which I feel privileged to
have shared. Her account joins an increasing body of self-reports of persons
who have recovered from aphasia and who point out what (and whom) they
perceive as important in the recovery process (Parr, Byng, & Gilpin, 1997;
Pound, 2000). A narrative such as this one serves as an important bridge
between the worlds of the person with aphasia and the therapist and can
provide the evidence for what should be done (Kleinman, 1988; Riessman,
1993). Focus on symptoms, either cognitive or linguistic, should never be
at the cost of the goal of maximizing personal control and re-establishing
autonomy and a sense of self. Therapy should work towards enabling choice,
respecting dignity, preserving continuity, and enabling social interaction and
98 Penn
enjoyment of activities. No person exists without others. This is reflected
most aptly in the Zulu proverb: A person is only a person because of other
people.
In an important article written two decades ago on the nature of suffering,
Cassell (1982) reminds us that the subjective experience of illness is very
different from the objective indices of disease. Suffering is increased if the
physician ignores these subjective aspects. We should always take into
account that the persons we treat have a personality and a character, a past,
family ties, roles, culture, politics, regular behaviours, a secret life, and a
perceived future. Although aphasia presents a tremendous challenge to com-
munication, we should never make the mistake of not asking about these
dimensions and trying to understand how they impact.
Perhaps ultimately the goal we search for is transcendence. Cassell (1982)
described transcendence as being expressed directly in religion and tradi-
tions and comprising an intense feeling of bonding with groups, ideals, or
anything larger and more enduring than the person. The spiritual dimension
is important when meaning is assigned, and suffering is reduced when it can
be located within a coherent set of meanings. Transcendence is the most
powerful way in which one is restored to wholeness after an injury to
personhood—it locates a person in a far larger landscape.
ADVICE FOR DEVELOPING CLINICIANS
The above musings about my own phases and the responsibilities of the
aphasia clinician lead inevitably to how to teach students of the 21st century
to access the landscapes of those whom they serve. While curriculum
content probably needs to be changed in many ways, perhaps the above
discussion brings us back to the question of whether therapists are born or
made.
A few years back Audrey Holland and I sat down to write a paper called
“Clinical Artistry in the Treatment of Aphasia”. It remains ( perhaps predict-
ably because of its nature) under review, but we have made a start on what
we think it takes to be a good aphasia clinician. It boils down to a list of
suggestions which we hope might help (see Table 5.2). Aphasia therapy is
not easy. It challenges your very core. For aphasia therapy to work well we
have to leave the confines of the therapy room both psychologically and
physically.
I have suggested in this chapter that to everything there is a season and
that the notion of cycles and phases is one we should be very much aware of.
While it may take courage to venture into “the larger landscape”, the jour-
ney has certainly been worthwhile for me and has been facilitated by the
wonderful persons I have worked with, who have taught me never to take
life and words for granted, and have provided me with a lasting love for my
profession.
Table 5.2 Penn and Holland’s checklist for successful aphasia therapy:
Some do’s and don’ts
• The brain should fascinate you endlessly. (You should be challenged by

explanations of what you see, and revere the complexity and unique
fingerprinting of brain damage on communication.)
• Recognize the phases in yourself and merge clinical practice with your own
fascinations.
• Be confident in saying that you don’t know, but conscientious in rectifying that.
• You don’t have to be the expert. There are far too many around already!!
• Do continue to read in and out of the field.
• Do keep hands on. Being with clients and knowing persons with aphasia will
enrich you more than any textbook. Always remind yourself through contact
with persons with aphasia about what it’s like not just to have but to live with
aphasia.
• Develop and use your sense of humour.
• Always ask what is wanted, rather than assume you know.
• Utilize creative methods of mentoring/shadowing/coaching as a method of
teaching clinical skills.
• Address some real fears: Will I have another stroke? Will I die? Being able
to cry with the client is more healing than being unrealistically joyous.
Perkiness is not next to godliness.
• Develop insight into your own reactions, be in touch with your own
feelings and be realistic about your capabilities.
• Anticipate, recognize and deal with burnout because it will happen and
working with clients when you are in that phase is detrimental to everyone
concerned.
• Accept ambiguity, uncertainty and change, for after all that is what life is.
The speech of the children of man is our interest

And the communion of man is our concern . . .
Therefore the duty we owe is sacred
And our calling is gravely important
Robert West (1961, p. 8)
ACKNOWLEDGEMENTS
I have gathered a posie of other men’s flowers. Just the hand that binds
them is my own.
Montaigne
I thank the following persons for their mentorship, past and present, and
their influence and support in shaping my professional interests: Len Lanham,
Tony Traill, Frances Hatfield, Steven Levinson, David Crystal, Martha Taylor
Sarno, Carol Prutting, Audrey Holland, Timothy Reagan, Dilys Jones, and
Rachel Chapman.
100 Penn
I pay tribute to Sally Byng, Carole Pound, and all those at Connect for
their far-reaching vision.
Finally I offer profound thanks to Valerie Rosenberg for her courageous
chronicle.
REFERENCES
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6 Just kidding! Humour
and therapy for aphasia
Nina Simmons-Mackie
Humour has been defined as that which is amusing, comical, ridiculous, or

ludicrous, and often connotes playfulness or fun (Berger, 1993). Humour is
insidious—it pervades our day, yet we hardly notice it. Humour has been
described as a process—the perceptual and cognitive ability to pick out
something unexpected or funny about a situation (Wooten, 2001). Laughter
is the behavioural response to humour. Laughter can be a mild pleasure or a
hysterical whole-body response—the proverbial “laugh till you cry”. Mirth-
ful laughter is sometimes difficult to stifle once it starts and flows through
the body like a current. In fact, the word “humour” derives from the word
“fluid” (Merriam-Webster, 1995). In the Middle Ages it was believed that
the body fluids or humours flowed through a person as aspects of feeling,
mind, and spirit (Wooten, 2001). Thus, humour carries a sort of metaphys-
ical feel to it—a union of the body and spirit.
People express humour in many ways. Humour is not restricted to telling
jokes. It can be a quip, a playful look, or a shared laugh. My sense of humour
tends to gravitate towards seeing the absurd in everyday life—like the hour
my husband and I recently spent at an eccentric veterinarian’s office discuss-
ing our sick dog, while a large yellow bird perched on my husband’s head! I
found the incongruity of this to be quite hilarious.
Humour is everywhere. We laugh during parties, movies, phone con-
versations, business meetings, and even during speech therapy for aphasia.
Although humour pervades human communicative interactions, humour rarely
holds the spotlight in the study of aphasia. In a review of the literature,
LaPointe (1991) urged clinicians and researchers to explore humour and its
effects. However, the literature continues to offer few references to humour
and its roles (LaPointe, Katz, & Kraemer, 1985; Marshall, 1994; Norris &
Drummond, 1998; Potter & Goodman, 1983; Williams, 1996). Perhaps
humour is a topic that evades analysis, since as E. B. White (1954) suggests we
can dissect humour like a frog, but the thing dies in the process and the innards
are discouraging to look at. Or perhaps humour is deemed too frivolous to
garner serious attention by speech-language pathologists. Although we tend
to discount humour as “frivolous”, it serves important functions in human
communicative interactions, including speech therapy interactions.
102 Simmons-Mackie
The importance of humour in therapy became obvious to me as a result of
an incident that occurred many years ago when I was a young aphasia ther-
apist. At the time I was working in a rehabilitation centre with another young
clinician. We loved our work. We couldn’t imagine doing anything more emo-
tionally and intellectually stimulating than learning from people with aphasia
day after day. My colleague was a very funny person. We laughed a great
deal, and our clients laughed a great deal. Even though we worked hard and
were very committed, we had a good time. One day as we were walking out
of our suite of therapy rooms with two clients, all of us laughing heartily, an
administrator pulled me aside and said, “All this laughing is unprofessional
and disrupts the business of this institute—you girls need to get serious.” I
was stunned! Being young and insecure, I believed her. My colleague and
I embarked on a mission to get more serious. But the zest went out of our
therapy, and we could see the effects on our clients and ourselves—we were
getting bored and irritable. The impact of the change was tangible. It didn’t
take long for my inventive colleague to come up with a solution. One day,
she came into my office with a dictionary and pointed to the word “serious”
and said, “a synonym for serious is grave. That means DEAD!” So we
decided to forget being serious! Since this experience I have consciously
considered fun and humour to be very important elements of work.
Since this original encounter with the administrator who suffered from
terminal professionalism (the stultifying belief that a professional must be
grim and sombre), a large literature has arisen that attests to the positive
impact of humour in health care. For instance, the nursing and psychology
literature is replete with information on humour in health care (e.g., Brooks,
1994; Buxman, 1991; Herth, 1984; O’Malley, 1992; Wooten, 1996). Much
of the focus of this literature is on using humour to cope with illness and
stress. In fact, there is an American Association of Therapeutic Humour and
journals that focus on humour as a part of health care (e.g., Murphy &
Englehart, 1994). There is also information in the sociolinguistics literature.
For example, conversation analysts have studied the structural characteristics
of joint laughter and telling a joke (Glenn, 1991–92, 1995; Jefferson, 1979,
1985; Sacks, 1974), and identified humour and laughter as official conversa-
tional activities (Goodwin, 1996; Jefferson, Sacks, & Schegloff, 1987). Thus,
humour is not simply random frivolity. It is an integral aspect of interper-
sonal communication. Humour is intensely social, and it is decidedly com-
municative. Therefore, it is an important topic to those concerned about
promoting interpersonal communication and social interaction for those
affected by aphasia.
APPLICATIONS OF HUMOUR TO APHASIA THERAPY
The topic of humour as it relates to therapy for aphasia seems to divide into
two major content areas. First, one can investigate the role of humour in
6. Humour and therapy for aphasia 103
standard therapy sessions—that is, how humour serves as an interactive re-
source during routine speech therapy. Second, we can address the purpose-
ful programming of humour into aphasia management and life with aphasia.
Humour as an interactive resource in

therapy interactions
Humour bubbles up often during routine speech and language therapy.
This is not the “falling down laughing” type of humour, telling jokes, or
“wearing a funny nose” type of humour. Rather, humour appears as
an “unplanned” part of therapy. Unexpected responses, subtle asides, or
exaggerated facial expressions arise during interactions with clients, and
create humorous interludes. What is the purpose of these humorous inter-
ludes during therapy? In order to more fully understand “what’s going on”
relative to humour in therapy, I initiated a research investigation employing
qualitative research methods (e.g., Agar, 1986; Atkinson & Heritage, 1984;
Goffman, 1974; Gumperz, 1982). I would like to share a few preliminary
observations about humour during traditional, didactic, individual aphasia
therapy interactions.
Routines of therapy
Therapy for communication disorders is an organized social event that
carries with it certain expectations. When something unexpected or incon-
gruous occurs during an organized social event, it is often perceived as
funny. Therefore, observations of humour in therapy help expose the expecta-
tions and discourse routines of therapy. In therapy, when the client and
therapist laugh at a deviation from the expected, it is clear that they “know”
what the expected routine is and recognize when it is altered. Thus, humour
foregrounds expected therapy practices. The following is an example of a
deviation from therapy routine that is perceived as humourous.
The clinician is trying to guess what a client is describing.

Clinician: So someone’s at the barbershop?
Client: Yes, yes, yes, yes
Clinician: And they’re getting their hair cut?
Client: Yea, GOOD! (points at the clinician)
Clinician & client laugh
Here the humour lies in the reversal of the typical therapy sequence. Usually
the therapist evaluates the client with a “GOOD”. Here the client does the
evaluation of the therapist—an atypical discourse sequence. Both client and
therapist recognize implicitly that the therapist is expected to do the evalu-
ating, not the other way around. So this unexpected discourse sequence is
funny! In fact, the more rigid the routines of a particular event, the more
104 Simmons-Mackie
likely a deviation will seem funny. The humour in such sequences highlights
the relatively rigid discourse structure of therapy interactions.
Participant roles in therapy

Humour can also highlight the expected roles of participants in therapy. For
example, seeing your therapist doing something absurd is funny because of
the therapist’s expected role as a “professional” and an expert.
A therapist and client are taking turns drawing cards from a stack in a Pro-
moting Aphasics’ Communicative Effectiveness (PACE) activity (Davis, 1993a).
The therapist is supposed to communicate the contents of the card to the client.
The therapist pulls a card from the stack, looks at the card, then furtively
replaces the card in the deck. The client gives her a stern look, and the therapist
loudly whines, “I’m not cheating!”
Both the therapist and client laughed after this incident. Why? Perhaps
because we don’t expect a therapist to cheat and then lie about the cheating!
This is not consistent with the role of the professional or expert.
Another interesting clue to roles in therapy is gleaned from who initiates
humour—who jokes? Preliminary analyses find that of the therapy sessions
studied, the overwhelming majority of the humour occurrences were clinician-
initiated. This is interesting since the literature suggests that humour relates
directly to power and superiority in society (Berger, 1993; Brown & Levinson,
1987; Davis, 1993b; du Pre, 1998; Emerson, 1973). Who jokes and who is
the target of joking discloses the social hierarchy. When the power structure
favours one individual over another, the more powerful individual has more
“joking rights”. In the samples studied, the therapists did more joking. Perhaps
the distribution of joking in these sessions is an example of the asymmetrical
social structure of therapy in favour of clinicians.
This brings us to another interesting question. Who laughs in response to
attempts at humour in therapy? In the therapy sessions studied to date, the
most common response was shared laughter. That is, both therapist and client
laughed. Clients routinely laughed at therapist-initiated humour. However,
there were examples of therapists not laughing at client attempts at humour.
Although not common, therapists on occasion did purposefully decline client
attempts at humour. Here is an example of a therapist ignoring a client’s
attempt at humour (Simmons-Mackie, Damico, & Damico, 1999, p. 225):
Clinician: Show with your hand how you brush you teeth.
Client: (Bares gums in an exaggerated fashion, laughing—he has
no teeth)
Clinician: Show with your hand.
(Lifts client’s hand and moves it towards his mouth)
Client: (Moves hand across mouth in brushing motion, frowning)
The therapist ignores the client’s humour and reorients to the task. The
subtle implication is that the client is not allowed to joke during the task.
This is a very powerful example of subtle cues to who has the right to joke.
It is possible that in some cases clients learn that they do not have “joking
rights” in therapy or that they are not permitted to initiate humour during
the work of therapy.
Values in therapy
The content of humour in therapy is also interesting. In the sessions studied
so far, the humour was benign. There were no sarcastic jokes or off-colour
quips. The overarching theme seemed to be “therapists used humour for
good”. In other words, it appeared that therapists used humour to help
manage therapy sessions and make clients feel better about therapy. In addi-
tion, humour typically did not “stand alone” and did not derail or replace
the activity at hand. Rather humour was tucked within larger discourse
units. Humour served as a temporary respite that shifted the tone of the
session. The humour appeared to be a covert way of managing interaction
and adding a more positive valence.
The positive use of humour in standard therapy sessions seemed to fulfil
several functions including (1) mitigating embarrassment, (2) motivating cli-
ents to cooperate, (3) reinforcing affiliation, and (4) relieving tension. The
funnier sessions definitely had a more positive and enjoyable feel. However,
there was an asymmetry to humour. Clinicians did most of the joking, sug-
gesting that in order to “do good work” these therapists controlled the
sessions, established the discourse structures and “called the shots”.
Why is asymmetry in “who jokes” or who controls therapy important?
The ability to exert power over others and take control of events is an
important aspect of maintaining autonomy and reinforcing self-esteem. If
expressing humour is an expression of power and contributes to self-esteem
and autonomy, then a more equal distribution of “joking rights” in therapy
might be important. Equality of joking could help equalize the relationship
and help build self-confidence in the person with aphasia. Perhaps as ther-
apists we might examine our own subtle interpersonal use of humour in
therapy and make sure that sessions are fun, that we use humour to advant-
age, and also that clients are empowered to use humour in therapy.
Let me share an anecdote to demonstrate the power of well-managed
humour in standard therapy. Kit, a lady with very severe aphasia, had worked
with two prior clinicians before she began working with Margie. She had
made very little progress and, in fact, often did not even show up for therapy.
Her husband said she did not like therapy. When Kit began to work with
Margie there was a change in her attitude about therapy. Therapy videotapes
of Kit with a prior clinician and Kit working with Margie revealed that both
therapists employed similar therapy tasks; however, the tone of the sessions
was notably different. With Margie, the session was replete with humour.
106 Simmons-Mackie
Kit was empowered to have fun—and she was very funny on the videotape
with Margie. Even though Kit was virtually nonverbal she used gesturally
conveyed jokes, prosody, and facial expressions to be funny. Kit’s husband
reported that her attitude towards therapy and her self-confidence soared
after starting to work with Margie. She was able to express her personality
and individuality. She became a person instead of a patient. Although this is
anecdotal it gives a sense of what humour might add in standard therapy—
and does add with many empowering therapists.
PREMEDITATED HUMOUR
Incidental humour within regular therapy tasks is not the only way to use
humour in aphasia therapy. The second major topic focuses on “premedit-
ated humour”. This is humour that is purposefully planned as a therapy task
or as the therapy itself.
Humour as a therapy task

Humour can be programmed as a therapy task—that is, the stimulus in
therapy. Thus, humour serves the same purpose as picture cards or written
questions. Humour becomes the context for working on individual commun-
ication goals. For example, therapy with an individual who is working on
reading comprehension might include funny stories or written jokes as the
reading stimuli. A client might practise specific spoken discourse strategies
while describing a funny picture or a series of cartoons. Clients and family
members can practise use of conversational supports such as drawing, ges-
tures, or writing while discussing a humorous event.
Why would we do this? Other than just being fun, the literature suggests
positive benefits to programming humour into goal-oriented therapy.
Humour and brain activation

Humour creates interesting activation effects on the brain, perhaps stimu-
lating right hemisphere activation and drawing more brain processing into
a given task (Davis, 1993a). For example, one study demonstrated that a
large portion of both hemispheres is engaged in the processing of jokes
(Derks, Gillikin, Bartolome-Rull, & Bogart, 1997). In fact, broad patterns of
activation probably occur for most types of humour. It would seem that
therapy that focuses on cerebral reorganization might be able to capitalize
on the activation patterns inherent in humorous stimuli.
Humour and memory

It has also been suggested that humour can improve learning and memory
(du Pre, 1998; Wooten, 2001). When something is funny it heightens and
focuses attention and provides added salience. Humour is both intellectual
and emotional, so it possibly draws on multiple processing systems. Humour
is a potential tool for teaching compensatory strategies or teaching commun-
ication partners. For example, I have worked with clients to come up with
memorable names for their compensatory strategies, such as the “come hither
stare” to request help in word finding from partners, or the “killer grab” to
describe a rather aggressive turn-taking strategy.
Humour and stress relief

Humour as the context of therapy also helps “lighten up” the hard work of
therapy. It relieves stress and heightens positive emotions. In fact, physio-
logical studies have highlighted the positive effects of humour on health
and stress relief (e.g., Berk, 1989a, 1989b; Fry, 1992). Tasks that achieve
communication goals and simultaneously relieve stress are practical and
efficient.
Humour as a communication facilitator

Humour has been touted as a way to facilitate communication by lubricating
the interactional process ( Volcek, 1994). This seems to support my own
observations that when people with aphasia “lighten up”, when they don’t
try so hard, they often do better at communicating. Success in therapy tasks
and enhanced motivation support the use of humorous therapy materials.
Humour as a social bond

When people laugh together the social bond is reinforced (Buckman, 1994;
du Pre, 1998; Jefferson et al., 1987). In groups, shared humour serves to
build group identity and promote interaction. Humour is fun; thus, motiva-
tion is enhanced both for clients and for clinicians. Clearly, there are many
potential benefits for using humorous therapy tasks.
HUMOUR AS THERAPY
Humour can also be therapeutic itself. If we believe in holistic, person-

centred programming for aphasia, then we must not ignore spiritual and
emotional health. Many have discussed the depersonalizing experience of
being a patient, the feelings of helplessness and loss of dignity, and the high
incidence of depression among stroke survivors (e.g., Cousins, 1979; LaPointe,
1997). Clearly these psychosocial consequences of illness could markedly
affect outcomes from aphasia therapy. Therefore, taking humour a step
farther we might actually consider it as therapy to decrease depression, raise
morale, and build a positive sense of self (Clark, 1988; Richman, 1995;
Wooten, 2001).
108 Simmons-Mackie
In fact, laughter is one of the four basic antidotes to tension and
depression within the strain of modern living. These stress antidotes are
(1) drugs, (2) exercise, (3) spirituality, and (4) laughter (Berk, 1998). Of
course, I feel compelled to add a fifth antidote to this list: (5) eating junk
food and chocolate! In fact, I recently found the perfect “no stress diet”
(Berk, 1998, p. 97):
Breakfast
–12 grapefruit
1 slice toast
1 cup skim milk
Lunch
4 oz broiled chicken breast without skin
1 cup steamed broccoli
1 cookie (biscuit)
1 cup herb tea
Afternoon Snack
Rest of package of cookies
1 quart chocolate ice cream
1 jar hot fudge sauce
Dinner
Double quarter pound burger with cheese
Super large fries
Jumbo soda
Bag of chocolates
Entire frozen cheesecake eaten directly from box
Since it is not recommended that speech therapists ply their clients with
drugs or chocolate, laughter is one stress antidote that we can easily pro-
gram into aphasia intervention. The following are potential benefits of
humour as a therapeutic regime and life enhancer.
Healing the body and preventing illness

Chronic syndromes such as aphasia can create a cycle of stress and anxiety
that negatively affect the body, exacerbate illness, and reduce the effective-
ness of therapies. Laughter has positive effects on our physiological response
to stress. Mirthful laughter enhances the immune system and positively
affects chronic illness (e.g., Berk, 1989a, 1989b; Fry, 1992; Kamei, Kumano,
& Masumura, 1997; Lefcourt, Davidson-Katz, & Kueneman, 1990; Martin
& Lefcourt, 1983; Soloman, 1987). Laughter can stimulate endorphins, acting
as a mood elevator and tranquillizer ( Volcek, 1994). Humour actually helps
heal the body and promote recovery.
Promoting well-being
When we expose people to humour it raises spirits and invokes positive
emotions (Erdman, 1993; Freud, 1960; Herth, 1984; Wooten, 1993). For
example, a research study of elderly people showed that a three-week
humour programme significantly improved morale, and decreased agitation
and loneliness among the participants ( Tennant, 1990). Thus, humour has
the potential to promote well-being.
Humour as defence mechanism and stress

reliever: Coping through humour
Humour has been described as the highest and most mature of all the
defence mechanisms—the indispensable little shock absorber (Buckman,
1994). Humour helps deal with pain, grief, embarrassment, anger, and pro-
longed stress. By seeing something as funny we minimize it and gain power
over it. Self-deprecating humour helps us and others deal with anxiety and is
a good way to model taking risks and being imperfect. For example, when I
make a mistake while teaching I often use humour to minimize the mistake
and my own embarrassment. I always seem to end up with chalk somewhere
on my anatomy while teaching classes; the “chalk check” at the end of my
classes is a form of “joke’s on me” that students enjoy. Clients can learn to
use humour to minimize their own imperfections and soften embarrass-
ment. This brings us to another benefit of humour: humour can help build
a positive sense of self.
Humour and the sense of self

A sense of humour and a sense of future are partners.
(Volcek, 1994, p. 120)
Humour can encourage a more positive perspective on ourselves and our

world. It has been said that using humour is like having inverse paranoia—
you think the world is out to do you good ( Volcek, 1994, p. 116). Humour
can improve perspectives by fostering objectivity about ourselves and our
situations. That is, if I view an event or some characteristic of myself as
funny, then it is not as dreadful as I thought. Humour builds a sense of
personal control over life. One might not be able to control the aphasia, but
one can control emotional responses to aphasia by substituting humour and
positive emotions for negative emotions. By controlling one’s emotions, the
locus of control shifts from the external world to the individual. Feeling a
sense of control is very important to well-being. When we learn to use
humour as a coping mechanism, we gain a sense of control over ourselves,
feelings of helplessness and anxiety are reduced, and a positive sense of self
is reinforced.
110 Simmons-Mackie
Humour also helps build insight. When someone pokes good-natured fun
at a behaviour, it can help the recipient identify a self-defeating or irritating
behaviour. In fact, sometimes I worry that aphasia therapy is too supportive,
that we don’t foster the growth of strong identities because we feel the need
to nurture and coddle clients. When therapists become caretakers and nur-
turers, helplessness and poor self-esteem might be promoted. Well-timed
humour can raise difficult issues and provide a context for gaining insight and
for self-actualization. Humour can communicate to a person that “I know you
have the strength to deal with this situation”. Thus, humour might provide
an acceptable medium for challenging clients to undertake something difficult
or deal with a difficult issue. In fact, psychotherapists sometimes use humour
to raise topics that might otherwise be too difficult to introduce into a
discussion, making humour an excellent tool in counselling (Buckman, 1994).
Humour as a learned cultural behaviour

Humour reflects one’s perspective on life and cultural beliefs. What is deemed
funny varies, from person to person and from culture to culture. There are
many factors that influence one’s appreciation of humour, such as ethnic
background, occupation, socioeconomic status, gender, age, political affilia-
tion, race, even hair colour. Dumb blonde jokes are usually not quite as
funny to blondes! And anyone with children is well aware that little boys
find anything related to bodily functions to be hilarious. Therapists might
help ensure that humour is personally and culturally appropriate for those
affected by aphasia ( Volcek, 1994).
While the propensity for humour is probably innate, like language, hu-
mour can be learned and expanded (Berger, 1993). Humour can be cultiv-
ated, and one’s sense of humour flowers with exposure. Groups or families
breed humour among themselves and instil particular humour styles such as
puns or word play versus practical jokes. Families or groups also often have
ritualized themes that bubble up all the time. For example, my husband and
I have a “speaking dog” theme as part of our family humour. We commun-
icate things from the perspective of one of our dogs. “Guess what Lou Lou
told me? She thinks it’s time that you take me out to a nice restaurant” or
“Whitie wants to know where you put the peanut butter!” This ritual
humour helps us avoid directly saying what might be fuel for conflict. Ther-
apists can help identify and promote ritualized themes in groups and within
families as an expression of humour. Also, therapists can assist families in
incorporating humour styles that are aphasia friendly.
DOING THERAPY
So how do we do humour as therapy? Humour as therapy involves a con-

certed effort to teach the benefit of humour, provide exposure to humour
and an effort to teach others to seek out humour, appreciate humour, and
even produce humour. Humour involves learning to search the world for
comic possibilities. My mother who is retired now calls me often to “report
in”. She always asks, “So, how are the dogs” and I always relate a funny dog
story (dog humour is indeed a big theme in our home). She looks forward to
our shared laugh over these dog stories. Then she relays the stories to her
friend, Agatha, who in turn tells her friends. In fact, my dog stories probably
entertain much of elderly New Orleans. This funny dog report has become
a very important ritual. Not only does it bring enjoyment to others, but also
I enjoy it—seeking out funny things to report brightens my days. Thus, a
key to building humour into life is learning to see the humour that is all
around us. Working with clients and family members in using methods to
inject humour into their lives is a possible goal in itself.
Humour therapy might start by introducing the concept of humour as
therapeutic. For example, information on the physical and psychological
benefits of humour can be provided. There is a huge literature on the bene-
fits of humour and the internet abounds with humour information and
resources. Passive exposure to humour in the form of videotapes, audiotapes,
books, and cartoons can be provided. The idea can be introduced that
humour is an important form of communication. So, for example, the ther-
apist might help others focus on how people react to humour—what do you
do when you are really happy or tickled? What does your face look like?
What do you sound like? How does your body move? How do you feel?
Clients and/or family members can listen to or try to produce various laughs
and talk about how they communicate different things—the scary laugh, the
Santa Claus laugh, the silly giggle, the howl. Typically, people start to laugh
just by hearing laughter! Dr Paul Berghoff (2001), a psychologist, works
with clients and families to develop a special “celebration strut”—a sequence
of behaviours that shows appreciation or joy. The celebration strut (it need
not involve walking) is like a personal version of a high five or football strut.
Such activities help those affected by aphasia recognize various forms of
communicating humour and joy.
Strategies for adding humour into daily life can be introduced. Like
most therapy recommendations, merely giving a client or family a list of
humour activities does not fulfil the goal. Rather, the process should be
participatory and fun; folks do best if guided through the process. They can
learn to enjoy and seek out humour as a part of life. Most of all, we all need
to learn how to adapt humour to aphasia. Obviously humour does not need
to be spoken. Visual jokes, vocalizations, facial expressions, and gestures
are great. The following are a few examples of ways to introduce humour
into daily life for those affected by aphasia, caregivers, and healthcare
professionals.
• Create a humour-charged atmosphere. By providing an environment

that reinforces and cultivates humour and fun, we can model this
atmosphere for those affected by aphasia, for students, and for other
health professionals.
112 Simmons-Mackie
• Keep a journal (e.g., via writing, drawing, pictographs) that depicts at least
one funny thing from each day to help focus on the humour around us.
• Provide access to video or audiotapes of comedians (public libraries
sometimes loan these free of charge).
• Provide access to humorous movies or television shows (old silent movies
or old “I love Lucy” shows are often hilarious and very visual).
• Join “on line” joke lists. For example, sites offer jokes, cartoons, or even
audios of people laughing.
• Read and collect cartoons.
• Read humorous books (e.g., “healthcare” humour, cartoons, jokes).
• Facilitate access to performances such as clowns or mimes.
• Provide weekly humour “prescriptions” such as the following (Herth,
1984).
If you do not laugh regularly, you may suffer from humourrhoids.

This is a condition that starts with the hardening of attitudes and
may actually lower your laugh expectancy. Suggested cures include
taking a mild laughsitive every day or laughing at one’s own every-
day unintended humour. These should restore you to regular hilarity.
( Erdman, 1993, p. 66)
• Create a “humour centre” at your facility. This can be as simple as a

bulletin board of funny cartoons, pictures or sayings, or as extravagant
as a “laugh room” where people enjoy comedy videos, books, cartoons,
funny hats and noses, or gags.
In addition to providing access to humour enjoyment, therapy might

involve working on producing humour. The following are a few examples
of humour-production activities.
• Work on “humour” discourse such as telling jokes or story telling. This

might involve learning to use supports to tell a joke or story (e.g.,
pictures, props). For example, therapists might employ conversational
coaching (Holland, 1988) to practise telling a funny story or to practise
getting the punch line of a joke.
• Practice using nonlinguistic humour such as pantomime, gestures, or
facial expressions.
• Keep a daily cartoon, joke, or funny newspaper story in one’s pocket
to show others. One man with aphasia collected funny newspaper
headlines to share with friends. Another collected jokes from his email
network and printed these to share with aphasia group members.
• Draw caricatures of situations or people. An excellent group project is
to work on drawing caricatures of events or famous people to grasp
humorous characteristics (but drawing caricatures of each other has the
potential to be embarrassing or hurtful).
• Wear a hat or T-shirt with a funny saying or picture.
• Keep a humour journal to share with other people. Once per day, think
about your day and find something funny about it. Write it down or
draw it, or work with a partner to represent it. The journal is then
shared with friends or a humour “buddy”.
While most of these examples focus on the person with aphasia, humour
as therapy is quite universal. It is a tool that is appropriate for people with
communication disabilities, caregivers, students, and healthcare providers.
For example, support groups for carers or rehabilitation team meetings might
incorporate humour as a “therapeutic” tool to reduce stress, enhance co-
operation, and improve the living of life.
THE HUMOUR ASSESSMENT
If we wish to incorporate humour into speech-language therapy, then it

might be appropriate to determine what we find funny and what our clients
deem funny. It is interesting that therapists spend time assessing the ability
to retrieve words, form sentences, or understand simple instructions, but we
rarely make a direct effort to assess how clients deal with difficult situations
or how they view the world and themselves. Richard Dana (1994), a psycho-
logist, suggests that humour can be a tool for assessing adaptive potential
and attitude towards change—attributes that are potentially important to
life participation and communicative reintegration.
A humour assessment might be in order to help gauge the humour of
those affected by aphasia. This might include observational assessment to
determine aspects of humour enjoyment, production, and style.
• Observe “receptive humour”. Are there clues that indicate if the indi-
vidual is receptive to humour? What does this individual laugh at? Is
this individual offended or hurt by certain humour?
• Observe “expressive humour”. How does this individual express or share
humour? Can this be expanded?
• What type of humour does the client seem to favour (e.g., irony, word
play, puns, sarcasm, slapstick, absurdities)?
• What modalities and humour characteristics might encourage humour
sharing (e.g., gesture/pantomime, graphics/cartoons, written jokes,
pranks)? Are there adaptations or accommodations that will enhance
humour appreciation and production?
• Are there any humour “themes”? Are there topics that are “taboo” for
this individual/family/group?
• Are there favourite comedy artists (e.g., comedians, clowns)?
• Observe changes in humour appreciation and/or production. Does the
client or carer show increases in appreciation or use of humour? When
114 Simmons-Mackie
clients make jokes it can signal diminished anxiety, increased assertive-
ness, and increased self-esteem and self-confidence (Buckman, 1994,
p. 19). Such changes are important outcomes to be documented.
HUMOUR CAVEATS
For every advantage of humour, there is probably a flip side. Humour is not
always funny to everyone. Humour is not always kind. In fact, humour can
be used for all sorts of wicked purposes such as exerting power or control
over others, minimizing and embarrassing a person or a whole group of
people, or expressing hostility. Therefore, any application of humour must
follow rules to ensure that it is appropriate and positive.
• Humour rules should be understood and reinforced. Humour should

never belittle or mock. Rapport and respect are the highest priority.
• Humour should be well timed and appropriate. When I worked as a
speech-language pathologist at a rehabilitation centre, I encountered
a good example of this maxim. One day while I was visiting in the
occupational therapy clinic of the centre, one of the vocational place-
ment counsellors (a lovely, feminine woman) walked into the room with
a theatrical moustache glued onto her face. The staff and clients in the
busy gym laughed uproariously. The incongruity was very funny.
Apparently, bolstered by the huge success of her prank, the counsellor
then went to her office and attempted to conduct an interview (mous-
tache still in place) with her next client. The client happened to be a
young man with aphasia who had been anxiously practising for this
interview for weeks. To him this interview was extremely important and
serious. When he walked in and saw the counsellor with her moustache,
he was totally undone and at a loss for words. The result was terribly
disappointing to the man with aphasia. A humorous prank in one setting
did not generalize well to the second situation.
• Maintain sensitivity to the interaction of social power and humour. If
a “joker” has more power than the recipient of the humour, then insens-
itive humour will increase the recipient’s sense of helplessness and
inferiority—this could easily happen in therapist–client relationships. The
humour in such cases becomes a method of controlling and keeping the
client in a low position. Similarly denying the client the “right” to use
humour can be a means for the therapist to keep control. Thus, potential
social consequences of humour must be considered.
• While humour can effectively draw attention away from a mistake or
error, humour loses its comedy when it is repeatedly used as a cover for
poor preparation or bad therapy.
• Humour should not be used to ignore or minimize a client’s feelings or
requests.
• Since humour is individual and cultural, then sensitivity to diversity is
important in order to avoid offending others.
• Remember to be sensitive to overhearers. I must admit to feelings of
inadequacy and paranoia after recently leaving a meeting room only to
hear the participants break into laughter as the door closed behind me.
Overhearers might think you are laughing at them!
• Forced humour tends to create awkwardness. Incorporating humour
in the management of aphasia should be fun. This happens when the
atmosphere fosters lightheartedness and openness. If professionals and
students promote the enjoyment of humour among themselves, then
this atmosphere more easily generalizes to therapy situations.
This discussion of humour in aphasia therapy extends beyond the typical

realm we think of as speech-language therapy. However, improved commun-
ication must occur in the context of enhanced life satisfaction, participation
in a social world, and a robust sense of self. Humour can play an important
role in this broadened context of intervention. Humour is intensely social
and intensely communicative. If used appropriately, it has great potential for
improving one’s quality of life, coping with stress, and adding fun to life for
people with aphasia, carers, and those of us who offer services to people
affected by aphasia.
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118 Holland and Ramage
7 Learning from Roger Ross:

A clinical journey
Audrey L. Holland and Amy E. Ramage
Roger Ross was a big man, in almost all ways larger than life. We learned an
incredible amount from him over the course of the six years we worked with
him, collectively and individually. Roger Ross had incurred a stroke at the
age of 62, 3 years before I1 met him in 1994. Although he had exhausted his
benefits for reimbursed services, he continued to seek help. Ruona Bertaccini,
of Martha Taylor Sarno’s staff, referred him to me when he moved from
New Jersey to Scottsdale Arizona, 120 miles from Tucson. A few months
later, he began coming to our clinic weekly, to participate in our aphasia
groups, and to continue individual treatment. He was a linchpin in our
programme until September 1999, when he suffered a second stroke that left
him unable to drive the 250-mile weekly round trip. This second stroke
seemed to “move about the wiring in my head” (to quote him) so that his
speech, if not slightly better, was certainly no worse. I remained in frequent
contact with him until his untimely death resulting from complications of a
fall, in October 2000. I last saw Roger Ross in late August of that year. We
will always miss him as our friend and teacher. He was our partner on a 5-
year journey we took to unravel his aphasia and what could be done about it.
We want to talk about that journey, emphasizing what we did, and what
we both learned from it. We begin by describing Roger’s aphasia and the
clinical interventions that were attempted; what worked and what failed to
work, and why. Then we will describe attitudes and beliefs, and conclude by
discussing what have become very dominant themes in our work. Some of
these beliefs he simply reinforced; others he helped us to develop.
ROGER ROSS’ APHASIA
A volumetric reconstruction of Roger’s brain revealed extensive left hemi-

sphere damage lesion with virtual destruction of Broadmann’s areas 22, 39,
and 40. He had no residual motor impairment, although he reported that his
voice felt tight and lacked its pre-stroke vocal range. The reconstruction also
1 The use of singular personal pronouns in this chapter refers to ALH, its first author, or when
appropriate, to Roger Ross himself. AER will be used to refer to the chapter’s second author.
7. Learning from Roger Ross 119
shows a very healthy right hemisphere, as well as the areas surrounding the
infarct. This healthy tissue appears to be partly responsible for his capacity
for change and learning following the stroke.
Rather than test scores, which have been described in a previous publica-
tion ( Holland, 1998), we summarize these findings with an impression of
Roger Ross’ language. The most striking initial observation was how easily
Roger wrote the words he could not say. He carried small pads of paper on
which he wrote troublesome words for his hearers to read as he continued
on. All of us, even his fellow aphasic group members improved our ability to
read upside down as a result of frequent talking to Roger. This writing
strategy, supplementing his laboured speech, made him a skilled commun-
icator. His word retrieval was limited, and he overused his few words with
impunity. For example, a spectrum of good things was typically described as
“interesting” or “terrific” depending on his degree of enthusiasm. Bad things
were “terrible”. If he could not say the word he searched for, he correctly
and effortlessly wrote it on one of the many small pads of paper he always
carried, trusted his listeners to read the word (from any angle) and just
continued to talk—about a wide range of topics. He made very few spelling
or perseverative errors in his writing, and the errors he did make were often
correctly chosen and spelled words in Portuguese, a language he spoke fluently
before his stroke. Proper names were particularly pesky. Paraphasic errors
almost never occurred, and long silences often occurred, seemingly in their
stead. He could almost never read aloud the single words he wrote correctly.
He spoke slowly, with false starts, revisions, and pauses. He did not write
phrases or sentences spontaneously (and still did not at the time of his
death). As hinted earlier by his inability to read aloud the single words he
wrote, he could not read text aloud. However, his silent reading comprehen-
sion was excellent, and he reported it to be “almost back to normal”. He
read daily for at least an hour with a discipline and motivation that were his
hallmarks. Finally, his comprehension of single words, when they were spo-
ken in isolation with little or no context, was poor. But his ability to under-
stand spoken discourse, jokes and puns, conversation, theatre and so forth
was as good as ours.
Thus, this puzzling man could: (1) retrieve the written form of single
words when he could not say them BUT then could not read them aloud;
(2) comprehend difficult text when read silently BUT failed totally to read
text aloud; (3) speak in laboured, complex sentences BUT could not repeat
or say the alphabet; and (4) follow normal conversation BUT had difficulty
understanding single spoken words and proper names.
Extensive testing, with a variety of instruments —The Western Aphasia
Battery (WAB), reading, writing, and semantic subtests of the Psycholin-
guistic Assessments of Language Processing in Aphasia (PALPA), written
and spoken tasks designed and described by Berndt and colleagues (Berndt,
Mitchum, Haendiges, & Sandson, 1997; Raymer & Berndt, 1996)—extensive
observation, and interaction, all coalesced into a pattern suggesting that,
although Roger could be classified as having conduction aphasia, he suffered
Table 7.1 Roger Ross’ strengths and weaknesses from tests and observations
Evidence Interpretation
Strengths
Excellent comprehension WAB, conversational Context enhances
for discourse and text skills, ability to read linguistic performance
reading advanced fiction,
nonfiction, newspapers
and magazines
Spontaneous single WAB, Berndt tests, Semantic system
word writing conversation largely intact
Lexical decision PALPA Phonologic/graphemic
input largely intact
Weaknesses
Cannot reliably access Observation, WAB Questionable single-word
semantic from minimal auditory comprehension
acoustic cues skills
Poor phonological WAB, PALPA, Acoustic to phonological
memory repetition tasks conversion fails when three
syllable span is exceeded
Poor grapheme/ WAB, PALPA, Cannot write nonwords
phoneme conversion conversation to dictation, minimal
ability with real words
while talking
Cannot rhyme PALPA Minimal internal
sound patterns
from a severe phonological access impairment. We believe in looking

at both strengths and weaknesses and how they balance in linguistic and
personal terms. The language strengths and weaknesses listed in Table 7.1
come from both formal testing and observation. Also listed here are sources
from which the strengths and weaknesses were derived along with their
effects on Roger’s communication.
Roger described his own problems as: “I have no sound patterns in my
head.” His description reminds us that professionals can sometimes save a
lot of time by listening to what our aphasic friends tell us is wrong. Indeed,
it is a clearer, less jargonistic description than the professional version, which
might be something like: “Difficulty in accessing the phonological lexicon.”
ROGER ROSS, THE PERSON
In addition to language strengths and weaknesses, personal character-

istics and coping styles must be considered if one wishes to describe an
individual’s particular aphasia comprehensively. Personality and character
play a role, not only in treatment planning, but also in living with aphasia.
Here are some of Roger’s characteristics that were influential.
Roger Ross could be described by vibrant adjectives—intelligent, courtly,
difficult, self-disciplined, loyal, motivated, funny, for starters. His careers, as
an international book publisher and consultant, as the mayor of the town in
which he lived, and as a foreign affairs expert, spanned three continents over
30 years. In addition to English and Portuguese, he also spoke Spanish and
French fluently. He was avid about food, theatre, dance, history, sports, and
politics. He read the New York Times daily, and consistently shared its op-ed
articles concerning the brain with his aphasia group. He also read Camus
and Garcia Marquez and other difficult authors. One of my responsibilities
to him ultimately turned out to be keeping up with him in worldly matters
and serving as his discussant and sounding board.
Long before Worrall coined the term “Participating in Choice” (2000)
Roger Ross was insisting on it. He was an object lesson in clinical decision
making: clinicians who decided to “work on something” without consult-
ing him about his desires and goals were simply rejected. So were clinicians
who were unaware of their own limitations. (Remember that he was paying
for his therapy.) For example, he undertook some private therapy closer
to his home, and quit following a session in which he used the word “pert”
and his clinician informed him “there was no such word”. He apparently
attempted to disagree with her, and she did not honour his challenge. He
reported that he went home upset, looked up “pert” in his dictionary, and
called to terminate treatment. “She made me doubt myself,” he told me.
“I don’t need it.”
No description of Roger Ross could be complete without noting his pas-
sionate belief in the power of aphasia groups. He disdained what he called
“cake and coffee” groups, but worked throughout his post-stroke life to
develop and participate in groups focused on coping with aphasia. When
I met him, he had formed and had run at least two aphasia groups, and
continued to do so for the rest of his life. His style was to get a group up and
running, then move on to develop another. In all, he probably initiated six
or eight aphasia groups. He wrote and published, with the help of his fellow
aphasic group members or his clinicians, two articles on the group experi-
ence (Holland and Ross, 1999; Ross, 1996). In one of these articles he states,
“I did not begin to get over aphasia until I became part of a group” (Holland
& Ross, 1999, p. 116).
THE INTERVENTION
What did we work on? In retrospect, I feel lucky in that, for some time, I
have been committed to the notion that ideally the clinician should facilitate
working on what the person with aphasia wants to work on. When this is
not possible, then it is mandatory to explain as clearly as possible, and to
provide some counselling concerning why such treatment is not likely to be
helpful, for instance, when clinical experience dictates that the aphasic per-
son’s chosen goal is probably unachievable. A relevant example might be
that of an individual with severe apraxia of speech who insists on working on
speech rather than on compensatory strategies that have some likelihood of
success.
We also believe aphasia treatment should be designed to maximize
strengths. This is in contradistinction to approaches that pinpoint and attack
where in the processing schema things break down, as in many standard
cognitive neuropsychological approaches to treatment. Thus my preferences
would have been to keep the writing strategy foremost, make it even stronger,
and complement this single-word writing ability with more extensive em-
phasis on writing longer units, or possibly to teach Roger to use computers
more effectively, given the silent reading skills he so obviously possessed.
But Roger wanted to be able to access words in spoken speech more
easily. He did not want to work on writing connected discourse, nor pursue
computers. My choices bored him, and he decided that neither avenue was
interesting or likely to be worthwhile to him. He wanted to substitute speech
for his single-word writing strategy.
Of all eight cases who resembled Roger Ross, and who have been de-
scribed in the literature (Shelton & Weinrich, 1997) not one clinician had
even considered trying to improve spoken word retrieval. Nonetheless we
undertook treatment aimed at efficient spoken word retrieval. ( This is called
Fools Rush In.) And I had to choose another strength to focus on if we were
to make any noticeable inroads on spoken word retrieval. I tried to bolster
Roger’s phonological weakness by using a technique that potentially could
work with an individual whose strengths were essentially personal, not lin-
guistic. In this case, the strengths were his motivation, his fascination with
being challenged, and his obvious intelligence.
The first approach was Autocue, first described in relation to writing by
Marie-Pierre de Partz (de Partz, 1986), and then more fully explicated for
word retrieval by Nickels (1992). Essentially as a phonological self-cueing
procedure, Autocue seemed a very sound tactical approach. The goal was to
use phonemic self-cueing first in an obvious, out-loud, up-front way until it
became firmly established. Then the next step would be to instruct Roger to
internalize the steps, to visualize the word “in his head” so to speak, and
apply the cue silently, and then say the word without the necessity of writing
it on paper.
Because the Autocue procedure has been well described in the above
references, as have its modifications for Roger (Holland, 1998), it is only
briefly summarized here. The clinician (in our case, in consultation with Roger)
finds a key word for each letter of the alphabet that the aphasic subject can
access consistently. For example, because Roger could consistently access
“terrific”, he was taught that if the word he was attempting to access through
his writing strategy, say “tarantula” began with /t /, he was to whisper “terrific”,
/t /, /t / . . . “tarantula”. Thus, the /t / in “terrific” became the bridge whereby
he could cue himself to access and orally produce the word “tarantula”.
Eventually, Roger was able to access /t / without use of the bridge word.
We taught each alphabet letter this way, beginning with consonants and
working with four or five letters and sounds at a time. We adapted the cue
cards from Hooked on Phonics for this purpose. Some of his bridge words
included Pat, enter, and bell. At one point during training, Roger noted that
he could not produce oral form of the word “p-r-a-y-i-n-g” by commenting
“I haven’t learned the ( gestured praying, wrote /p/ ) thing yet.” It took ap-
proximately 50 one-hour training sessions in which Autocue and dependent
activities were featured, to master his bridge words and phonemic cues. That
is, once learned, his therapy focused on each cue to reading word lists and
naming pictures in confrontation tasks, with relatively good success. As he
progressed with phonemic self-cueing, the contingencies were tightened,
and Roger was expected to visualize (“inside his forehead”) the way the
word was written, apply the phonemic cue, and say the word without writing
it. This was not easy, but with effort and time he could do it fairly well. Each
session ended with a conversation, geared to promote this internalized use of
Autocues spontaneously.
However, there was minimal generalization to conversation, probably
because the Autocue procedure competed poorly with his already effective
writing strategy. Even at its most successful the cueing was quite slow.
Further, practice with confrontation naming and with oral reading of word
lists was very different from on-line retrieval of words Roger wanted to use
in conversation. ( Lesser, 1989, noted that retrieval of the words in confronta-
tion naming tasks was very different from the self-selection involved in
conversational word retrieval. This was the problem we were encountering.)
Thus, at the end of each session, when we moved to spontaneous conversa-
tion, bridges and autocues were abandoned in favour of the more efficient
and worldly writing strategy.
The Autocue procedure is laborious and challenging to any but the most
dedicated of aphasic persons. Roger was one of these. He truly enjoyed the
intellectual nature of the activity, and we decided to confront the generaliza-
tion chasm directly. An important and relevant observation was that not
only Roger, but also listeners like me, inadvertently played into his writing
strategy by failing to require him to say the words he wrote. In effect, the
writing strategy seduced us all.
To approximate conversational word retrieval more closely, we moved
from confrontation naming and word lists to categorical naming. An even
more critical feature was that both Roger and I made a mutual commitment
to apply the Autocue strategy in our conversations. He would not write until
he had tried to say the word via his Autocue training, and if he initially
wrote the word, I would refuse to read it. This was at least as difficult for me
as it was for Roger—perhaps even more so, since I quite liked and was
intrigued by his writing strategy to begin with. The writing was comparat-
ively fast and effective—and along with most of his listeners, I was content
to say the words he wrote for him. It was Roger (and the trees that he killed
with his endless consumption of writing pads) who was dissatisfied.
Each of the 11 treatment sessions that followed had five phases, detailed
in Table 7.2. They were designed to illustrate to Roger (and to me), the
effectiveness of the phonemic cueing and to provide extensive practice in
using it for self-selected words.
I took responsibility for the categories for the naming tasks. They were
deliberately selected to be difficult, and thus to have potential to evoke
proper names, as well as to challenge Roger intellectually: they are also
included in Table 7.2.
Table 7.2 Phases of treatment
Phase 1 Pre-test
“Say words you can think of that have something to do specifically with
the Renaissance” (5 minutes). Start and end times, words generated, and
total words documented and reported to RR.
Phase 2 Demonstration
“This time I want you to write and then say words relating to the
Renaissance” (5 minutes). Time recorded, words generated, and total
words documented and reported to RR.
Phase 3 Practice
“Now we are going to practise writing and saying. You are going to
use a new category. This time come up with words that relate to drama
and dance. I will help, but we will not go to a new word until you have
said the one you wrote” (25 minutes). Data gathered and reported to
RR.
Phase 4 Post-test
“Its time to go back to Renaissance words. Remember that a pen is
available. Use it if you need to. But try to SAY these words” (5 minutes).
Data gathered and reported to RR.
Phase 5 Conversation
“Let’s talk about . Your pen is there to help if you need it.”
Substantive words generated were tallied and reported to RR.
TOPICS FOR CATEGORY NAMING
Three topics for each session Phases 1, 2, 3, 4, Homework

(1) Medical terms, Religion, Wild West; (2) Latin America, Russia, Movie Titles;
(3) Buildings and Monuments, Natural Sites, World Holidays; (4) Music, Printing/
Publishing, Politicians; (5) Renaissance, Drama and Dance, Break—no homework;
(6) WWI, Weather, Famous Animals; (7) Cleaning terms, Cooking, Herbs
and Spices; (8) Sports, Travel, Time and Space; (9) Media, Television, Insects;
(10) Tools and Utensils, Emotions, Water; (11) Vehicles, Body Parts, Games.
Table 7.3 Crib sheet
• Do not hold your breath

• Speak on exhalation
• Breathe out
• Get the first sound under control before talking
• Give yourself permission to
䊊 Be flexible. If you can’t say the word you want, let go and think of an
alternative
䊊 Relax
䊊 Take a chance. Paraphasias are at least in the ballpark
Table 7.4 Comparison of pre- and post-test phases and conversation
Session # Pre Post Conversation
1 5 7 6
2 6 13 11
3 6 8 6
4 4 5 10
5 4 6 7
6 8 8 9
7 2 9 13
8 9 10 not tested
9 5 10 14
10 5 10 14
11 6 14 not tested
Roger also had homework to do daily, alone. This is a consistent feature

of much of the work done in our clinic, where a general goal is to have
aphasic individuals develop a sense of responsibility and ownership, not only
of their problems, but also of solutions to them. (Roger always did his
homework avidly, provided it appeared to him to be sensible.)
Finally, Roger also had a crib sheet, illustrated in Table 7.3 for use with
his homework, as well during sessions, and presumably whenever he chose
to use it. (He almost always had it with him, in his briefcase, or in the form
of a wallet card.) It included reminders for maximizing speech production.
We formally evaluated our treatment approach by comparing Phase I (Pre-
test) and Phase 4 (Post-test) for each session. The data appear in Table 7.4.
It can be seen that consistently higher performance was generated in the post
treatment phase of each session. Pre treatment phases were variable—the
dip in Session 7 was probably due to Roger’s insistence on naming cleaning
products, rather than words related to cleaning (that is, for example, to
say “Boraxo” instead of “soap powder” or “broom”). He relaxed this self-
imposed criterion during that session’s post-test. I should note that typically,
only about half of the words generated in Phases 1 and 2 showed up in the
post-test, indicating that he was generating words from a much larger semantic
pool that he could access at any one time.
Because this was a fairly rigorous experiment—done that way because
this was part of a federally funded research project—I have more extensive
reliability data, as well as data from conversation that showed Roger using
increasing numbers of words. These data have also been described elsewhere
( Holland, 1998). Here, because we are describing a clinical process, we
emphasize some observations that began with this treatment and became
part of Roger’s consistent strategies.
First, he was increasingly skilled at saying the words he wrote, and less
reliant on his listeners to say them. Second, he began to permit himself to
make paraphasic errors. This suggests that he was beginning to become
more tolerant of his errors, or that he was actually getting closer, somehow,
to his phonological lexicon. In either case, paraphasias gave listeners more
clues than did silence, so they facilitated conversation. Throughout the course
of his previous treatment, I urged him to take chances with paraphasias. It
was to no avail until after these generalization sessions, when he could see
their advantage directly. This represents a lesson in the power and import-
ance of person-relevant explication and demonstration. A third change was
that, with increasing frequency, Roger could use a single written letter to cue
oral word retrieval. In some instances, simply moving his pencil towards
paper was sufficient.
Although Roger continued until he died to use writing both as a phonemic
self-cue and as a substitute for oral word retrieval, we all believed he had
increased his ability to communicate orally. Why did it work? One reason
had to be our mutually increased discipline in trying to use phonemic cueing
to facilitate oral word retrieval in our therapy. Another reason was related to
incorporating conversation into every session as a trial balloon right after
the treatment. (Roger and I were never able to deny ourselves conversation,
usually going on and on before and after our more formal exchanges. But here,
building it in directly after cueing was required proved to be advantageous.)
Following Autocue, we changed focus to developing and carrying out
specific training on scenarios and bits of real-life interactions that gave Roger
particular and consistent difficulty. In our research we have recently been
exploring the effects of what is referred to as “context” building on the work
of Hinckley, Carr, and Patterson (2001). Context-based training can be
contrasted to more traditional training in which components of bigger
behavioural units are systematically taught, and expected to generalize to
a wide number of behaviours in context. This is referred to in the skill
acquisition literature as “part task training”. For example, when we practise
word retrieval skills, we often target words (for example, family names) that
we expect the person will use in many settings. In contrast, the procedures
of context-based approaches specifically target the content words and gram-
matical structures that might be appropriate for a single scenario, such as
making a toast at a wedding, and drill the explicit scenario.
This concept can be used to characterize contemporary approaches to
second language acquisition, where the focus has shifted away from learning
vocabulary and sentence types and grammatical rules, to approaching dia-
logues appropriate to specific contexts, such as finding out where the post
office is, or ordering your favourite meal in a restaurant.
We approach context-based training by first conducting an interview,
designed loosely in consonance with Linda Worrall’s procedures for her
functional communication therapy planner (1999). The goal of this inter-
view is to choose some specific scenarios and scripts as stimulus material
for the training. Examples include such things as buying a specific gift at
a store, ordering in a restaurant, telling a joke, using a photo album to
cue self-disclosure, talking to a travel agent, and many other short transac-
tions, interactions, or monologues. The clinician writes the scenario, and
modifies it as a result of consultation with the aphasic person who intends
to use it.
Next, the scenario is practised intensively, with the goal of making it
automatic. In Roger’s case, he chose some explicit scenarios that gave him
particular trouble. They were giving directions to his house over the phone,
and instructing a bartender or friend to make Roger’s idea of a perfect
Martini. We wrote the scripts with Roger’s input. He approved or modified
them as he saw fit and we changed the explicit language to accommodate his
aphasia. Then we practised and practised and practised them, with Amy and
me, with other people we could collar into listening, in aphasia groups, and,
in the real test case, the real world. And of course, Roger practised daily at
home with a tape recorder to check his own work.
He was extremely successful with his scenarios, and we were preparing to
continue with more of them when the second stroke occurred and he was
forced to terminate formal therapy.
Roger Ross has substantiated our beliefs in some basic principles of inter-
vention with people who have aphasia. These include the following:
1 To the fullest extent possible, make the focus of treatment a joint deci-
sion, of the aphasic person, his or her family and only lastly, you.
2 Therapy is a collaborative undertaking, and a collaborative
commitment.
3 Ensure that your rationales are clear, not only to you, but to the aphasic
person. That is, if you can’t explain what you are doing to the aphasic
person’s satisfaction, you probably shouldn’t be doing it.
4 Provide demonstrations of effectiveness of what you are doing, in
addition to rationales.
5 Challenge, encourage personal responsibility and ownership, and lighten
up.
6 Attend to strengths before weaknesses.
7 Be flexible. When something doesn’t work, try something else.
8 Remember that it is never too late to change.
Roger Ross also taught us other things, but they were about us, not
therapy, and not Roger. Here are two of them:
1 We are not experts in anyone’s aphasia. We may bring collective infor-

mation, gleaned from many aphasic individuals with whom we have
worked, but the true expert in one’s own aphasia is oneself.
2 Often, in clinical interactions with aphasic persons, the behaviour that
needs to be changed is our own.
Finally, Roger Ross was largely responsible for helping us to recognize

and understand that acceptance of a problem, fitting aphasia into one’s life,
and recognizing aphasia as a player and as a reality, are crucial aspects to
learning to live both with, and around, aphasia. This is an evolving process,
which probably takes some amount of time to grow into.
In a stunning interview near the end of his life, Roger Ross basically said
that he doesn’t think about aphasia anymore. He is just who he is, doing
what he has to do. More than just aphasia, acceptance is an essential feature
in surviving any of the many tragedies that life can, and often does, deal to
any or all of us.
ACKNOWLEDGEMENT
This work was supported by the National Multipurpose Research and Train-
ing Center Grant DC-01409 from the National Institute on Deafness and
other Communication Disorders ( USA).
REFERENCES
Berndt, R., Mitchum, D., Haendiges, A., & Sandson, J. (1997). Verb retrieval in
aphasia, 1: Characterizing single word impairments. Brain and Language, 56, 68–
106.
de Partz, M. (1986). Re-education of a deep dyslexic patient: Rationale of the method
and results. Cognitive Neuropsychology, 3, 149–177.
Hinckley, J., Carr, T., & Patterson, J. (2001). Differential effects of context-based and
skill-based treatment approaches: Preliminary findings. Aphasiology, 15, 463– 476.
Holland, A. (1998). A strategy for improving oral naming in an individual with a
phonological access impairment. In N. Helm-Estabrooks & A. Holland (Eds.),
Approaches to the treatment of aphasia. San Diego CA; Singular Publishing Group.
Holland, A., & Ross, R. (1999). The power of aphasia groups. In R. J. Elman (Ed.),
Group treatment of neurogenic communication disorders. Boston: Butterworth
Heinemann.
Lesser, R. (1989). Some issues in the neuropsychological rehabilitation of anomia. In
X. Seron & G. Deloche ( Eds.), Cognitive approaches to neuropsychological rehabilita-
tion. Hillsdale, NJ. Lawrence Erlbaum Associates Inc.
Nickels, L. (1992). The autocue self generated phonemic cues in the treatment of a
disorder of reading and naming. Cognitive Neuropsychology, 9, 155–182.
Raymer, A., & Berndt, R. (1996). Reading lexically without semantics: Evidence
from patients with probably Alzheimer’s disease. Journal of the International
Neuropsychology Society, 2, 340–349.
Ross, R. (1996). Aphasia groups: A view from the inside. Advance Magazine, May 3,
1996: 18.
Shelton, J., & Weinrich, M. (1999). Further evidence of a dissociation between
output phonological and orthographic lexicons: A case study. Cognitive
Neuropsychology, 14, 105–129.
Worrall, L. (1999). FCP: Functional Communication Therapy Planner. Bicester, UK:
Winslow.
Worrall, L. (2000). The Participating in Choice ( PIC) approach to aphasia rehabilitation.
Talk given at the 12th World Aphasia Therapy Conference, Rotterdam, The
Netherlands, August.
130 Elman
8 Group treatment and jazz:

Some lessons learned
Roberta J. Elman
Life evolves. And so too does speech-language treatment. Or at least it

should. Twenty years ago my approach to working with aphasia focused on
structured drills that could be represented on Base-10 forms. It was the same
approach that was accepted and taught to young clinicians in universities
throughout the United States. And looking back at the treatment I provided
two decades ago, I truly regret that the people with whom I worked were so
rarely given the opportunity to learn how to communicate and move for-
ward with their aphasia.
Twenty years is a long time. And thankfully life has brought me to the
Aphasia Center of California. It is in this setting where I continue to learn
that structure continues to be desired by therapists. Structure is safe and
predictable and allows the therapist to be in control. But most human com-
munication is not structured in this way. And by imposing artificial structure
on communication we create an environment that has little to do with com-
munication in the real world.
As a youngster I played the piano. My piano lessons over a 6-year period
revolved around classical pieces by composers such as Bach, Beethoven, and
Mozart. With practice, I became quite expert at playing these pieces from
memory. However, if my piano teacher had asked me to write my own
classical piece or to create a variation of a piece that I had memorized, I
wouldn’t have had a clue how to do it. My biggest frustration was with the
need to practise the same pieces over and over. My piano teacher’s goal was
perfect performance of the music at recitals. Looking back I realize that I
wasn’t able to articulate my goal at the time—but I think it was the desire to
create something new. By the age of 13, my piano lessons ended when I told
both my parents and my piano teacher that I had no further desire to
memorize classical pieces.
My experience with piano lessons mirrors my early experience of providing
aphasia treatment in the 1980s. My treatment with Mr C is illustrative: An
outgoing man, Mr C was in his 60s when he had a stroke resulting in Broca’s
aphasia. I was his first outpatient speech-language pathologist, and he was
motivated and eager to regain his language skills. Just out of graduate school,
I created a variety of treatment tasks that included inserting prepositions
8. Group treatment and jazz 131
in phrases, stringing together SVO sentences, comprehension of written
sentences and paragraphs of increasing length, and writing basic biographic
information such as name and address. This treatment was provided in the
days before significant healthcare cutbacks in the United States, so Mr C
and I worked together for almost a year. We both became frustrated when
no matter how hard Mr C tried, the overall result of our therapy was
improved “rote” performance on treatment items with little generalization
to novel items. I must admit that Mr C did not improve significantly in his
ability to become a better communicator outside the specific treatment tasks
or treatment environment. The end result was similar to my piano-playing
experience—good rote performance with little ability to create novel material.
After additional years and clients, I started to think more about language
use. My epiphany came while watching a documentary by Ken Burns on
jazz. This television series follows the evolution of jazz over time in the
United States. As I watched each episode, I realized that language shares
much more with jazz music than with classical music. Language and jazz are
improvisational in nature with the language topic or jazz piece rarely the
same. And both require creativity and context. In fact, musicians often liken
jazz improvisation to “telling a story” (Sabatella, 1996). My piano lessons
would have been dramatically different (and ultimately more satisfying for
me) if the goal had been to create and improvise rather than memorize.
As a speech-language pathologist, I believe that our ultimate goal is to
improve language use so that individuals can participate more fully in life
(LPAA, 2001). In most societies, spoken language use equates with conver-
sation. Conversation in the 21st century is ubiquitous. It seems that people
are constantly talking, with mobile phone use accelerating the amount of
time people are engaged in conversation. Conversation is the main way that
human beings create and maintain relationships, and serves as the primary
interface between an individual and society ( Kagan & Gailey, 1993; Pound,
Parr, Lindsay, & Woolf, 2000). Therefore, if a key goal is for clients to be
able to participate more fully in life, they will need to increase their skills in
conversational speech and other creative uses of language.
It shouldn’t come as a surprise that clinician-imposed structure in lan-
guage tasks does not typically result in improved language use in natural
contexts such as conversation. There is an enormous mismatch between
what is being taught and what is in fact needed. The question I continue to
ask myself is how can I as a speech-language pathologist facilitate language
improvisation?
Group treatment has provided me with one vehicle. Groups can provide a
safe context for members to improvise language and to create new ways of
communicating. In addition, groups provide an opportunity for people with
aphasia to observe and learn language patterns and strategies from one
another. Other benefits of group treatment include the support and confid-
ence to improvise language that group members provide. In a conversation
group, each member has the opportunity to “solo” and feed off another
132 Elman
member. It is important for conversation groups to be both natural and cohes-
ive (Elman, 1999). The ideal group is one in which its members express
genuine interest in the conversational topics and one another.
In a foreword to a book I edited on group treatment I wrote:
Group dynamics are complex. If individual treatment can be compared

to teaching a musical instrument, group treatment is much like conduct-
ing an orchestra. The clinician must keep in mind the communicative
strengths and weaknesses of all group members. In addition, personality
issues are overlaid, because group dynamics and group process are more
than a sum of their individual parts.
(Elman, 1999, pp. xiii–xiv)
My music analogy has evolved further in the last few years: rather than
conducting an orchestra, I believe that a speech-language pathologist who
facilitates a group is more akin to a musician who facilitates a jazz ensemble.
This is because the language score is unknown in conversation, group mem-
bers play off and bootstrap onto one another’s language, and on the best
days, the result is dynamic and truly improvisational in nature. Group treat-
ment provides people with aphasia with an opportunity to practise their
improvisational language skills.
Group treatment has become the environment of choice for my current
treatment (Elman, 1999; Elman & Bernstein Ellis, 1999a, 1999b). I believe
that group treatment provides individuals with aphasia an excellent vehicle
to learn to improvise their communication skills. At its best, group commun-
ication treatment resembles a wonderful jazz combo—with each member
riffing, elaborating, or interrupting. I watch a creative process unfold that is
as much art as science. And thankfully group treatment has provided mem-
bers with the opportunity to communicate and improvise again.
However, group treatment is not foolproof. As I listen to therapists talk
about the type of group treatment they conduct, many gravitate towards
increasing the structure in the group, making the group treatment become
the same process as traditional individual treatment, but executed in a group.
Why do therapists gravitate towards such structure? One reason may be that
structure returns control and dominance to the therapist, and may serve to
reduce the discomfort that some therapists experience when unknowns are
introduced into treatment.
Another reason may be that therapists believe that facilitating conversa-
tional skills is not truly therapy. I remember working with Mrs W (during
the same time period as Mr C) who was a brilliant woman with Wernicke’s
aphasia. Although her jargon and semantic paraphasias certainly made com-
munication difficult, Mrs W was often able to use her own creative strategies
and props to get her message across. Mrs W had travelled the world and
owned several Berlitz guides that translated everyday words and phrases into
foreign languages. She had discovered that if she used the English side of the
8. Group treatment and jazz 133
pages, she could let workers at her retirement residence know what she
wanted to order for her meals or what everyday chores were needed. Upon
entering my treatment room, Mrs W enjoyed starting each of our treatment
sessions with discussion of world events and recountings of some of her
amazing life stories. As a young clinician, I was fascinated by these conversa-
tions, and amazed at how well Mrs W was able to convey so much informa-
tion given her severe aphasia. However, I felt extremely guilty talking with
her in this way, because I felt that I wasn’t “doing” therapy. I realize now
that the conversation that we engaged in was vital for Mrs W to improve
and improvise her language abilities. She somehow knew that intuitively;
unfortunately, at that time I did not.
Language and music are not the only areas in life that require improvisa-
tional skills. An inspired cook invents new dishes and combinations rather
than following an exact recipe. A mathematician finds a new way of solving
a mathematical problem rather than using the tried and true method. An
artist creates a novel work of art rather than copying a previous painting or
drawing. In fact, the ability to improvise is essential to all creative thinking.
Clark Terry, a jazz musician, is quoted as saying that the best way to
become a great jazz player is to “imitate, assimilate, innovate” (Sabatella,
1996). If we extend this thinking to language, an individual begins by acquir-
ing basic language structures. The process does not stop there, but con-
tinues with using these language structures in creative and innovative ways.
Today I believe that our focus as speech-language pathologists should be to
help individuals with aphasia become improvisational language users.
REFERENCES
Elman, R. (Ed.). (1999). Group treatment of neurogenic communication disorders: The

expert clinician’s approach. Woburn, MA: Butterworth-Heinemann.
Elman, R., & Bernstein-Ellis, E. (1999a). The efficacy of group communication
treatment in adults with chronic aphasia. Journal of Speech, Language, and Hearing
Research, 42, 411–419.
Elman, R., & Bernstein-Ellis, E. (1999b). Psychosocial aspects of group communication
treatment: Preliminary findings. Seminars in Speech & Language, 20(1), 65–72.
Kagan, A., & Gailey, G. (1993). Functional is not enough: Training conversation
partners for aphasic adults, In A. L. Holland & M. M. Forbes (Eds.), Aphasia treat-
ment: World perspectives (pp. 199–225). San Diego: Singular Publishing Group, Inc.
LPAA Project Group (2001). Life participation approach to aphasia: A statement of
values for the future. In R. Chapey (Ed.), Language intervention strategies in aphasia
and related neurogenic communication disorders (4th ed., pp. 235–245). Baltimore,
MD: Lippincott, Williams & Wilkins. [Originally published in the ASHA Leader,
5(3), 4 –6.]
living with communication disability. Bicester, UK: Winslow Press.
Sabatella, M. (1996). A whole approach to jazz improvisation. Lawndale, CA: A.D.G.
Productions.
134 Morris, Howard, Kennedy
9 The value of therapy:

What counts?
Julie Morris, David Howard,
and Sinead Kennedy
Change is central to the idea of aphasia therapy. Whenever we (as therap-

ists) engage with a person with aphasia, we hope to be able to offer some
kind of intervention that will improve their quality of life, will improve their
language skills, and will give them the means to change the way they interact
with the world. We have a multitude of assessments, both quantitative
and qualitative, that can be used to assess these changes. Because therapy is
not simply “the delivery of treatment”, but an interactive process engaging
and challenging both the person with aphasia and the therapists, we, as
therapists, need to be equally open to change. One aspect of this is the
willingness to drop or adapt therapy methods in the light of accumulating
evidence of both their (in)effectiveness and ( perhaps not unrelated) how
they are seen by the client. More interesting is the challenge to what we
value in therapy and what we count as “success” when there are mismatches
between the different kinds of change (in assessments, targeted skills, quality
of life, social engagement). Then we need to question which we value and
why.
In this chapter we describe the process and progress of a course of therapy
with one man with aphasia ( Lawrence), not because the therapy was con-
spicuously successful (as we will show, it was not), but because it raises a
number of issues that do, we believe, relate to the real-life, ever-changing
process of therapy. These issues include:
• What counts as improvement? And from whose perspective?

• Whether complex strategies for circumventing problems are effective.
• What is the role of therapy many years after the person became aphasic?
• What are the roles of group and individual sessions?
First, however, we briefly describe the context—how we organize and

“deliver” therapy. This is because it is rather unusual, providing its own,
quite specific challenges and opportunities, and its constraints are necessary
to understand the process of therapy with Lawrence.
The clinic was established in 1999, with the aid of a grant from the
Tavistock Trust for Aphasia. Clients come for a 12-week block of treatment,
9. The value of therapy 135
attending 3 days a week from 10.15 to 3.30 pm. In each day they have one
45-minute individual (one-to-one) therapy session in both the morning and
the afternoon. The remainder of their time is spent in therapy within a
group with, usually, seven other clients. In total there are 12 clients in a
clinic, of whom 4 will be having individual therapy sessions at any one time.
There are specific aims for both group and individual therapy sessions for
each client. The long-term aims for the clinic are negotiated individually
with each client.
LAWRENCE: THE CASE HISTORY
Lawrence had a CVA 7 years before he came to the clinic, at the age of 50.
A CT scan showed a large left temporo-parietal infarct. He has a resulting
right hemiparesis and walks with a stick.
Before his stroke, Lawrence worked as a sales director at a national bak-
ery. He is married and lives at home with his wife, Patricia. They have two
grown-up children. Lawrence enjoys outings with close friends and family,
but tries to avoid social contact with strangers without someone to support
him. Lawrence and Patricia enjoy frequent holidays abroad.
After his stroke, Lawrence had excellent speech and language therapy that
is described by Grayson, Franklin, and Hilton (1997), focusing first on word
comprehension and retrieval and then on sentence comprehension. He was
seen immediately post-stroke by a therapist, and when he transferred to a
rehabilitation unit for 3 months he had continuing in-patient therapy. After
leaving hospital, Lawrence had further therapy at home for the remainder of
the first year. This was followed by a break and then attendance at a support
group. After a further break, he referred himself again for therapy via a
computer course organizer. This was for advice about accessing basic com-
puting courses. The speech and language therapist then referred him to us.
He and his wife had continued to do work at home, sometimes using their
home computer, since discharge from therapy.
LAWRENCE’S COMMUNICATION
When we first saw him, Lawrence’s spoken output was non-fluent (in the
sense of being slow and broken rather than being agrammatic), with mostly
high-frequency content words and frequent pauses. He relied a lot on stereo-
typic phrases; for instance, “wait a minute now”; “oh god it’s . . .”. There
were also some semantic errors.
Lawrence’s spoken output is illustrated by his description of the picture
from the Comprehensive Aphasia Test (Swinburn et al., in press [2004] ).
In this picture, a man is sleeping in an armchair. Just above him are three
bookshelves. A cat on the top shelf is reaching down with its paw to try to
catch a fish in a bowl on the shelf below. In doing this, the cat has dislodged
two books from the top shelf that are falling towards the man’s head. A small
boy, playing with a car on the floor, is pointing towards the cat:
Lawrence: It’s a sleep . . . like (points to man) (pretends to sleep and

snore) like that . . . and it’s the the . . . the er . . . wait a
second, wait a second . . . it’s the the cat . . . and it’s (made
sound about books and gestured falling) like that and its
there and its oh look at it (LAWRENCE pretends to point like
boy) look at it, and its /fle/, and that’s it I think
Tester: Um?
Lawrence: Look at it just like that as well . . . and it’s er, like it’s (pre-
tends to snore) . . . that’s all I think . . . there, there, there
(pointing) . . . that’s it
Tester: . . . What’s the cat doing in the picture there? (Tester points)
Lawrence: its erm . . . wait a second, it’s er . . . like that, what’s it called
now, wait a second now . . . the fish, the fish like /ku/!
Tester: . . . What’s it going to do to the fish?
Lawrence: just eat eat like that (gestures eating)
Tester: . . . Yeah . . . anything else? Is that everything? I think, isn’t
it?
Lawrence: and this like (points to man and pretends to sleep and
snore) like that and there . . . and I think that’s it
In conversation, he gave the impression of having generally good com-

prehension of language, although with some misunderstanding. He was
unable to read and, indeed, unwilling to attempt to do so. He had very
limited written output; he would, however, sometimes write the first letter
of a word.
In his communication, Lawrence relied heavily on others. He and Patricia
communicated relatively successfully, but this relied heavily on their shared
knowledge and his wife’s ability to fill the gaps or guess his meaning. Law-
rence appeared to expect Patricia to understand and was frustrated if she did
not, appearing to perceive this as her failure. This pattern was also seen with
others, with the listener usually required to do a great deal of the commun-
icative “work”, unacknowledged by Lawrence. This was not always as suc-
cessful as with Patricia. He sometimes used gesture, and sometimes spelled
first letters with his finger, although not always accurately.
PRE-THERAPY ASSESSMENT RESULTS
Lawrence’s language abilities and disabilities were formally assessed 3 months

before starting the clinic and again at its start. The assessments used were
the Comprehensive Aphasia Test (CAT; Swinburn et al., in press [2004] ),
spoken and written word–picture verification (using semantically related
distractors; Morris unpublished), the Nickels naming test (in both spoken
and written form; Nickels, 1992a), and retelling of the Cinderella story
(Saffran, Berndt, & Schwartz, 1989), as well as other tests (including meas-
ures of conversation and social participation) not reported here.
These formal assessments showed that in auditory comprehension,
Lawrence made a small number of semantic errors with single words, and
had difficulties in understanding complex sentences. He performed at chance
level in the comprehension of reversible sentences, choosing reverse role
distractors in the Birkbeck Reversible Sentences Comprehension Test (Byng,
Black, & Nickels, unpublished). In written language comprehension, Law-
rence had problems at a sentence level. He was able to copy but not generate
written words.
In tests requiring spoken output, Lawrence was good at single word
repetition (14/16 correct), but very poor at reading single words aloud
(2/24). Picture naming was also poor (11/24).
Analysis of his Cinderella narratives showed relatively normal phrasal
structure, but much reduced thematic complexity, with 30% of arguments
omitted. He relied to a great extent on light verbs (do, make etc.) and
pronouns whose reference was not clearly established. In real life, his wife
Patricia, who shares the context, can find this much more comprehensible
than others.
Further investigation of Lawrence’s reading and letter knowledge showed
that letter cross-case matching was relatively good (22/26; PALPA test 19;
Kay, Lesser, & Coltheart, 1992) and that he had partly preserved know-
ledge of letter–sound correspondences (19/26; PALPA test 22). He was very
poor at blending phonemes (with three-phoneme items scoring only 4/40
correct). On a test of word reading he was able to read only 2/24 items
correctly. Errors tended either to be no responses or to give some semantic
information about the target. For example:
HOSPITAL the /dak /, the doctor there, not the doctor, it’s the . . . the . . . the
house, not the house
RIDICULE its er . . . good god . . . no!
In naming pictures, he was able to retrieve the names of 11 of the 24

items correctly, with errors again comprising mostly semantic information
and no responses. When he tried to write object names, in his incorrect
responses (almost all—51/52—were incorrect) the first letter was right on
11/51 occasions.
Figure 9.1 summarizes Lawrence’s performance on the CAT Language
Battery. The results are expressed as T scores (mean 50 and standard
deviation of 10 in a large unselected sample of people with aphasia, using
a non-linear transformation). It shows relative strengths in cognition (using
screens of Raven’s coloured progressive matrices, and non-verbal tests of
70
65
60
55
T score
Test 1
50
Test 2
45
40
35
30
Written
picture desc.
Spoken
picture desc.
Writing
Auditory
comprehension
Naming
Cognition
Visual
comprehension
Repetition
Reading
Figure 9.1 Lawrence’s scores on the CAT Language Battery, tested 3 months before
therapy started (Test 1) and at the start of therapy (Test 2).
semantic and episodic memory), and repetition, with an approximately equal

degree of disability across the other modalities.
The CAT Disability Questionnaire investigates the perceived degree of
difficulty in a number of areas. First, it probes the perceived degree of
handicap in different situations in comprehension, expression, reading, and
writing. Then it probes the perceived degree to which difficulties intrude,
“get in the way of ”, understanding, talking, reading, and writing. It then
asks about the degree to which the language difficulties affect the client’s
self-image, examining worry, confidence, self-esteem, and feelings of isolation.
The final sections asks questions to assess the degree to which the language
difficulties cause distress (“emotional impact”) with feelings of frustration,
sadness, anger, helplessness, feelings of unfairness, pessimism, dissatisfaction
(and so on).
The results of the CAT Disability Questionnaire are shown in Figure 9.2,
again expressed as T scores relative to the aphasic population (this test was
only done at the first assessment, 3 months before starting the clinic). It is
clear that Lawrence perceives himself as particularly impaired in reading.
His feelings about his aphasia, on the other hand, are commensurate with
his degree of language disability, with very similar T scores to those shown
in the CAT Language Battery.
70
65
60
55
T score
50
45
40
35
30
Comprehension
Writing
Self image
Expression
Reading
Intrusion
Emotional
impact
Figure 9.2 Lawrence’s scores on the CAT Disability Questionnaire 3 months before
therapy started.
GOAL SETTING
Lawrence and his wife Patricia had two main concerns. First they both
wanted Lawrence to be able to say more; understandably they both felt that
his difficulties in word retrieval were a major impediment to effective com-
munication. Second, Lawrence wanted to be able to try reading.
Initially, Lawrence had been very resistant to any reading task. For exam-
ple, the following exchange occurred after a single word reading test:
Tester: . . . A bit more reading next time?

Lawrence: Cause I can’t read that’s all
Tester: No, no . . . its good to try though isn’t it?
Lawrence: But I can’t read, so
Tester: Its just part of the assessment . . . you did all right there
Lawrence: But it’s this now (pointing to sheet of written words he has
just had to read), it’s not very good, you see
He often refused to do tasks involving written words in the initial stages of

being seen.
After discussion, we adopted the following as aims of the therapy with
Lawrence:
• To achieve the best communication possible.

• To widen his communication strategies, so that he is less dependent on
Patricia.
• In individual sessions, “part-task train” reading and word retrieval, by
learning the individual elements for a strategy.
• In the group, reinforce the above in communication (conversation) with
different people (“whole task training”?).
• To gain support from others, and see other ways of managing living
with aphasia.
We decided that, in the individual therapy sessions, we should focus on:
• helping Lawrence develop letter–sound relationships that would facilitate

his reading (including of function words);
• helping Lawrence develop strategies to facilitate his word-finding diffi-
culties (via practice of naming and the development of a self-cueing
strategy).
We agreed we should not focus on either his difficulties with word com-
prehension or his difficulties in reversible sentence comprehension, because
Lawrence did not see or experience these as problems. The real obstacle to
communication, in everyone’s view, was his difficulty in word retrieval.
LAWRENCE’S THERAPY
First we describe what we did in individual therapy. For his reading, we

concentrated on developing his knowledge of letter–sound relationships, and
then on blending phonemes. The therapy was based on that described by de
Partz (1986; see also Nickels, 1992b).1 This depends on using a self-selected
relay word for each letter of the alphabet, chosen so that the first phoneme
of the word corresponds to the most common realization of the first letter.
The client learns to associate each letter with its relay word, and then to
segment off the initial sound from that word. This is done first overtly and
subsequently covertly (i.e., without the need for the relay word strategy).
The aim is that by overlearning the task, letters will be automatically associ-
ated with their sounds. These relay words were chosen by Lawrence himself,
with guidance from the therapist. For example, Lawrence chose “apple” as
his relay word for A and “ink” as his relay word for I. Initial clusters were
avoided, short vowels were used for initial vowels, and the right phoneme
1 With roots, though, that go back at least to Goldstein (1948).

was used (C for cat not city). A number of digraphs were also included (CH,
SH, TH, and NG).
Having established letter-to-sound correspondences so that Lawrence could
produce most letter sounds promptly and accurately, we introduced blend-
ing. Like de Partz (1986) we started with non-words. To facilitate the pro-
cess of blending we started with vowel and consonant combinations ( VC);
the vowel can merge into the final consonant with minimal need for blending.
Lawrence, however, objected to being asked to practise reading using non-
words. He was not persuaded by our explanations that this was to ensure
that he had good non-lexical skills that could be learned well before applying
them to real words. We therefore complied with his wishes and moved on to
practising these skills using short real words.
In designing therapy for Lawrence’s word retrieval difficulties, we initially
adopted a “multi-modal” therapy approach. This was built around evidence
from Weigl (1961), Howard, Patterson, Franklin, Orchard-Lisle, and Morton
(1985), and others that processing of a target picture name in relatively well-
preserved modalities (in this case word-to-picture matching, word repeti-
tion, and copying) can make the word available for speech production (in
this case) naming. The procedure, aimed at an initial target set of 25 nouns
and 10 verbs, was as follows. First, we would ask Lawrence to name the
target picture without help. This was to allow us to monitor progress and to
offer treatment only for the items he found difficult. Then, if he had failed
to name the picture correctly, we would ask him to do written word–picture
matching (with one written word and a choice of four pictures), then to copy
the word, cover it and write it, then cover the written attempt and produce
the spoken name, providing progressive phonemic cues if necessary.
We abandoned this after 3 weeks, because Lawrence was making little
progress with the target items, and because he didn’t like the task. Despite
our attempts to explain, he didn’t see the point of word-to-picture matching
which he found—or thought he found—trivially easy. We also abandoned
this because he had started to fingerspell targets, very often getting the first
letter right; he had acquired fairly competent letter-to-sound correspond-
ences, and it was clear that he benefited from phonemic cues.
This meant that he had developed into the position where he had all the
component skills to benefit from Nickels’ (1992b) “autocue”. This is an
approach where, when retrieving a word, the client thinks of the first letter,
sounds it, and then uses this self-generated phonemic cue to prompt word
retrieval. Lawrence had all the skills necessary to develop this approach.
Moreover, it has the advantage that it offers a general strategy to deal with
word retrieval difficulties that can be used with any word that is problematic.
Lawrence responded much more enthusiastically to this approach, partly
perhaps because it built upon and acknowledged his developing skills and it
had surface plausibility as a way of dealing with his word retrieval problems.
The third area targeted in Lawrence’s individual therapy sessions was
function word reading, introduced after 4 weeks of therapy. This was
because he found reading function words especially problematic (probably
because of their lower imageability and higher syntactic load), and this was a
real impediment in his moving towards reading and understanding sentences
and text. Here we used a “relay phrase” strategy based on work by Morton
and Patterson (1980) and Hatfield (1983). Together with Lawrence, we
generated relay phrases for common function words (e.g., fish and chips; I
want that car). The aim was that Lawrence should learn to associate the
relay phrase with a function word, and use this to cue production. In prac-
tice, he used this in conjunction with, as well as an alternative to, his letter–
sound-based strategy to support function word reading.
Within the group setting, Lawrence was frequently perceived by the clini-
cians and other group members as “self-centred”. Initially he was intolerant
of others’ communication difficulties, and sometimes laughed at their prob-
lems. This was an issue that had to be addressed for both Lawrence and a
second client. Lawrence took the comments made in discussion on board
and did seem to modify his behaviour. Alongside this, Lawrence expected
the others to understand his communication. As many were unable to do as
much communicative “work” on Lawrence’s behalf as, for example, Patricia
did, communication often broke down. This may have led to Lawrence’s
resistance to tolerating the difficulties of others. Their feedback to him was
direct and unqualified!
Lawrence was usually motivated within the group, although this was de-
pendent on topic and task. He continued to rely on his listener, focusing this
predominantly on the group facilitator and a friend within the group. By the
end of the therapy period, in the group Lawrence demonstrated an increased
awareness of others’ needs and difficulties. There was evidence that he used
a self-cueing strategy. He would use fingerspelling (often of the first two or
three letters) and then try and sound the word out. As his assessment results
would suggest, this was not always successful ( both in word finding and
reading). He showed increased confidence, and was now willing to attempt
most tasks.
OUTCOME OF THERAPY
The first way we assessed changes as a result of therapy was using the Com-
prehensive Aphasia Test, first at the end of the 12-week period of therapy,
and a second time 3 months later. The results are shown, for the different
functions of the CAT Language Battery in Figure 9.3. It is immediately
apparent that Lawrence’s results at the post-therapy assessments are not sub-
stantially different from those pre-therapy. This applies both to tasks that
were focused on in therapy (naming and reading, for example), and those
that were not (e.g., repetition and comprehension). This failure to observe
improvement in the scores on a general aphasia test might be because Law-
rence has, indeed, not improved. It might, on the other hand, be because
70
65
60
55
Test 1
T score
Test 2
50
Test 3
Test 4
45
40
35
30
Spoken
picture desc.
Writing
Auditory
comprehension
Naming
Cognition
Visual
comprehension
Repetition
Reading
Written
picture desc.
Figure 9.3 The results of the CAT Language Battery at the end of therapy (Test 3)
and at follow-up 3 months later (Test 4). Scores 3 months before therapy
(Test 1) and at the start of therapy (Test 2) are also shown.
this test, like others, probes performance in each domain with a very limited
number of items, and has, as a result rather limited sensitivity to change.
Lawrence was tested with the Disability Questionnaire of the CAT on three
occasions: once when we first saw him, once at the end of therapy, and again
at the 3-month follow-up. The results of this are summarized in Figure 9.4.
In terms of rated disability, there is a small amount of improvement after
therapy. On the intrusion sub-tests there is virtually no change between tests
1 and 3 (before and after therapy), but substantially greater rated impact at
the 3-month follow-up; we are not sure quite what to make of that.
Lawrence’s treatment in one-to-one sessions had two main focuses: word
retrieval and reading. Changes in word retrieval were tested in two ways.
The Nickels naming test probes retrieval of 130 items with different numbers
of syllables in the targets. The strategy that Lawrence had been taught—
writing down the first letter(s) of the word, either in his head or on paper,
and using his newly developed letter-to-sound correspondences to generate
a cue for himself—would be expected to work better with shorter words
where it would yield proportionately more information about the target.
Changes in his naming scores are illustrated in Figure 9.5. Overall he im-
proves from 20% in the pre-therapy assessments to 29% in the post-therapy
70
65
60
55
Test 1
T score
50 Test 3
Test 4
45
40
35
30
Comprehension
Self image
Writing
Expression
Reading
Intrusion
Emotional
impact
Figure 9.4 The results of the CAT Disability Questionnaire at the end of therapy
(Test 3) and at follow-up 3 months later (Test 4). Scores 3 months before
therapy (Test 1) are also shown.
0.40
0.35
0.30
Proportion correct
0.25
One syllable
0.20 Two syllables
Three syllables
0.15
0.10
0.05
0.00
Test 1 Test 2 Test 3 Test 4
Figure 9.5 Naming accuracy for one-, two-, and three-syllable words over the four
testing sessions in the Nickels naming test (n = 130).
0.40
0.35
Proportion arguments omitted 0.30
0.25
0.20
0.15
0.10
0.05
0.00
Figure 9.6 The proportion of obligatory arguments omitted in re-telling the Cinderella
story over the four testing sessions.
assessments. This change, while small, is statistically significant ( Wilcoxon

matched pairs, z = 2.14, p = .016, one tailed). As Figure 9.5 shows, however,
this change differed as a function of the syllable length of the target: one-
syllable words improve by 18%, two-syllable words by 6%, and three-
syllable words decline by 3%. This relationship between the amount of change
and target syllable length is significant ( Jonckheere trend test, z = 3.05,
p = .001); there is greater improvement with shorter target words.
To assess whether there were any changes in word retrieval in a less
structured task, we examined his telling of the Cinderella story, focusing on
the proportion of obligatory arguments that were omitted. The results are
shown in Figure 9.6. It is clear that the improvements in naming in the
Nickels naming test are accompanied by a reduction in the numbers of
arguments omitted in narrative speech.
The main thrust of reading therapy was based on the use of grapheme
correspondences followed by blending of the phonemes to facilitate reading.
This was supplemented, as described above, by a specific programme to aid
reading of function words. Overall scores on the CAT reading sub-tests
show no significant change in the reading of content words, but a small but
reliable improvement with function words (see Figure 9.7). Further assess-
ments concentrated on the components of reading that had been treated.
Letter-to-sound correspondences showed only marginal, and non-significant
improvement, from 19/26 pre-therapy to 22/26 at the end. These numbers
conceal some more qualitative changes. Whereas before therapy he had only
been able to produce a sound if he could think of a word that began with
that letter—a process that was laborious, time consuming, and prone to
error—after therapy he could do this with much more facility, without, in
55
50
45
T score
Content words
Function words
40 p = .04
35
30
Figure 9.7 Lawrence’s scores on the content and function word reading sub-tests of
the CAT over the four testing sessions.
almost all cases, producing a relay word overtly. His blending ability was
tested before and after therapy, using a 40-item test, all with CVC targets.
This included both items where the onset had to be blended with the rime,
resulting in a real word or a non-word, and where three individual phon-
emes had to be blended to produce either a word or non-word. Each of the
four sets of trials was presented in separate blocks. Lawrence had scored
very poorly on this blending test before therapy, but showed a dramatic
improvement as a result of the therapy, as can be seen in Figure 9.8.
Much of the therapy involving blending had focused on short words.
However, assessments used contained a mixture of short and long words.
It appeared to be the case that Lawrence was able to sound out the letters
of longer words but then failed to blend them, presumably because he had
forgotten what the initial sounds were by the time he reached the end.
Although there was little change in Lawrence’s scores on reading, examina-
tion of his error patterns showed a different set of results.
As can be seen from Figure 9.9, only a small number of items led to either
orthographically or semantically related responses. Similarly, few responses
were unrelated to the target. In contrast, in the two pre-therapy tests, “no
response” errors predominated, and these were usually Lawrence simply
responding “no”. Following therapy, Lawrence no longer failed to make an
attempt but rather there was a dramatic shift in strategy, with him attempt-
ing to sound out many items. Note that this has been scored as a sounded-
out attempt if Lawrence tried to sound out the first letter. On some items he
sounded out more than this, but the first letter has been taken as a sounded-
out response.
1.0
0.9
0.8
0.7
Proportion correct
0.6
0.5
0.4
0.3
0.2
0.1
0.0
Figure 9.8 Lawrence’s scores on the blending test.
20
15
Number of errors
Semantic/
circumlocution
Orthographic
10
Unrelated
No response
Sounded out
5
0
Figure 9.9 The distribution of reading errors on the CAT content word reading sub-
test, over the four testing sessions.
These lengthy attempts characterized his responses in reading aloud fol-

lowing therapy. However, they were not always successful. Whilst Law-
rence’s ability to both sound out and blend the sounds from written words
improved on testing, his reading failed to improve in terms of number cor-
rect. It is not clear how automatic these skills need to be in order to be
incorporated into the reading task. Lawrence was able to carry out these
“skills” in the test situation, but was unable to bring them together within
a reading aloud task. In particular, while he achieved reasonable accuracy
in sounding out the letters, he had much more difficulty in blending them
(despite the dramatic improvement he had shown in blending when the to-
be-blended phonemes were given to him by the examiner).
The overall pattern in changes shown in these assessments is clear. Law-
rence showed small, but statistically significant, improvements in all the
target areas worked at. The improvements were particularly prominent in
the very specific skills worked at. These changes were not reflected in scores
on the CAT Language Battery, mostly because a general language battery
cannot be sensitive to small changes in specific areas, but also because Law-
rence’s language impairments were largely unchanged.
LAWRENCE’S PERCEPTION OF THERAPY
Despite little quantitative change in his spoken output, both Lawrence and
Patricia perceived significant change in his abilities, especially in relation to
his reading. There were qualitative changes in the kinds of responses he
made, but these did not result in him being able to read more items cor-
rectly. Despite this, Lawrence became much more positive about reading—
he would willingly attempt the reassessments and reported trying reading at
home. This was in stark contrast to his frequent refusal to cooperate in
reading tasks initially. This mismatch between actual test scores and per-
ceived change is what became of interest.
One aspect that appeared to be important to Lawrence was that he felt he
had at least some “control” of the situation; i.e., that he was influencing
therapy via his comments. He had strongly disliked initial assessment (“im-
posed” and potentially highlighting failures), but as therapy progressed and
his input was listened to, he became increasingly positive.
In an interview approximately 3 months after the end of his therapy at
the clinic, Lawrence and Patricia were asked about his communication. This
interview was unrelated to the clinic and carried out by an unbiased
interviewer who sought to find out information about the kinds of strategies
Lawrence had developed in relation to his communication generally. In this
interview several comments were made about Lawrence’s reading. When
asked what Lawrence did when he could not think of a word, Patricia
responded:
You usually write the first letter if you can’t think of the word, because it’s in
your, you know what the word is.
This demonstrated that Lawrence did use a fingerspelling strategy spontane-

ously in his communication.
A more extended—but unsolicited—reflection on the clinic by Lawrence
and Patricia came later in the interview:
Interviewer : What are your impressions of the therapy you received
during your individual one-to-one sessions?
Lawrence: Oh fantastic, really nice
Interviewer : Did you enjoy them?
Lawrence: Enjoyed them because, because A, B, C and that and its
good
Interviewer : Ah-ha, cause you were working on your letters
Lawrence: Yes, oh-yes
Interviewer : Do you feel anything changed in your time at the clinic?
Lawrence: . . . Oh I don’t know, it’s it’s everything
Interviewer : Ah-ha
Lawrence: It’s everything
Interviewer : What, what do you think did change Lawrence?
Patricia: . . . There was one main thing wasn’t there, that changed
Lawrence: One main thing, yes
Patricia: What was the main thing that you can remember that you
couldn’t do before you came to the clinic?
Lawrence: ABCDEFG
Patricia: You could actually relate to the letters
Interviewer : Um-hum
Patricia: Which he couldn’t do before, whatever word you were
trying to think about you’d say, what letter does it begin
with or does it begin with /d/ “D” he says, doesn’t matter,
that didn’t help him
Lawrence: That’s right
Interviewer : Right
Patricia: But that was the one thing
Lawrence: And now now it’s good
Patricia: Yes, that was the one thing that you did learn
Lawrence: Yes
Interviewer : Ah-ha
Lawrence: Smashing, really is
Patricia: Even now, you still do that if he’s thinking of a word he’ll
say the letters. You did that yesterday in the shop
Lawrence: Yes
Patricia: He’ll write, either write the letters down but more now you
actually say them whereas before you couldn’t say the letters
Interviewer : Right, yes
Lawrence: And it really is good
Patricia: Yes, it helps obviously, if you can’t think of the word
Interviewer : When you went to university to do speech therapy?
Lawrence: Yes I think that’s good that
Patricia: That’s when it got a lot better
Lawrence: That’s good
Patricia: From er when he started there in February
Interviewer : Really?
Lawrence: Mm-mm . . . Cos it’s
Patricia: He couldn’t think of the letters of the word ‘till then
Lawrence: It’s like nothing, nothing at all
Patricia: Couldn’t think of the alphabet at all when we were read-
ing
Lawrence: Mm-mm
Interviewer : Right
Patricia: And you used to say it was like the word began with a B.
He’d say, “It doesn’t matter” it didn’t help him at all
Lawrence: No
Patricia: He knew the word in his mind, he just couldn’t say it, but
me saying what letter it began with, it didn’t help, until he
went to the university. And it wasn’t ‘til after that, it’s the
first time you’ve ever been able to say the letters haven’t
you?
A little later the interviewer asked:
Interviewer : Is there anything you feel able to do now that you could
not do before?
Lawrence: Oh its great
Interviewer : Specific things Lawrence, try and pin it down. Do you
think there is anything that you do either on or your own
or with Patricia that you didn’t do before?
Lawrence: Yes
Interviewer : Or do you think you do similar things?
Lawrence: Well, er, Woolworths
Interviewer : Ah-ha
Patricia: Walk to Woolworths on your own. Yes, you wouldn’t
have done that normally, I’ve tried all ways
Interviewer : Ah-ha
Patricia: Give you more confidence in other words?
Lawrence: Yes
Patricia: Do you think its give you more confidence to go out on
your own
Lawrence: That’s right yes
Patricia: Like to buy something in a shop
Lawrence: . . . Woolworths and er . . . camera as well
Patricia: Sorry, you picked up, yes you did you picked up the films
for the camera as well
Lawrence: Yes
These comments show that Lawrence views his involvement in the clinic
very positively. During the interview he described his experience at the
clinic as “fantastic” and “really good”. It appears that he sees himself as less
handicapped in some areas, for example reading, and is willing to do things
independently that he could or would not before.
FOLLOWING DISCHARGE FROM CLINIC
Lawrence now regularly attends a Speakability meeting once a month.

Speakability is a national aphasia charity that co-ordinates self-help meetings
which run approximately once a month. These are led by the people with
aphasia themselves and have mixed content depending on what the group
members wish. Lawrence has also been seen by his speech and language
therapist to continue the reading work. There was a considerable gap follow-
ing the end of clinic, but then he began an 8-week block of therapy, being
seen once weekly. The focus of this block was discussed with Lawrence and
Patricia and it was agreed it would focus solely on reading. Lawrence and his
wife generated a list of personal words—family names, local place names, and
shopping items—that he wanted to practise. They work on these during the
week and progress is reviewed once weekly. Words that break letter-to-
sound correspondence rules are marked with an exclamation mark.
The aim was to move him on from sounding out each letter to trying to
get whole word recognition for a small set, or for Lawrence, at least, to be
able to communicate what he did know of the word. Strategies such as use of
rhyme have been developed, for example, if he is able to read the “at” of
“cat” then he could use rhyme to generate which item he was reading.
In the future therapy may drop to once monthly with Lawrence and
Patricia working on items together in the interim period. He is extremely
motivated to work in his own time. It has also been recommended that
therapy include work on developing the strategy of sounding out sufficient
of the word to provide himself with a phonemic cue.
ISSUES RAISED IN THERAPY
What changes matter?

The central issue raised, for us, by our therapy with Lawrence is what we
value in change. Ideally we, as therapists, would “provide treatment” that
resulted in improvements in all of: global aphasia impairment measures (e.g.,
the CAT Language Battery); assessments of impairment in the target
functions worked on; and assessments of disability (e.g., the CAT Disability
Questionnaire). And we would hope to find that the client viewed the experi-
ence of the “treatment” positively, and saw it as resulting in real life changes
in what they were able and willing to do.
It is not common, of course, to attempt to evaluate the effects of therapy at
all these levels at once. We have tried to do so, and Table 9.1 summarizes the
results that we have presented. We could view the results with satisfaction.
Table 9.1 A summary of the effects of therapy
Domain Target Source of Change

evidence
Overall language CAT Language No change

impairment Battery
Impairment in Word retrieval Nickels naming Small, but
target functions test and statistically
Cinderella significant
narrative improvement
Letter-to-sound PALPA letter Improved ability;
correspondences sounding changes qualitative
Blending Blending test Large improvement
Content word CAT word reading No change
reading sub-test
Function word CAT function word Small, but
reading reading sub-test statistically
significant
improvement
Language CAT Disability No significant
disability Questionnaire change
Experience Client interview Very positive
of therapy
Real life changes Client interview Some noted
Lawrence has improved in the target skills in a way that shows that what we
did “worked”. And Lawrence is very positive about the experience and, at
least in some areas, feels that he can engage in a wider range of activities.
Defending this position, one could argue that overall language batteries are
not sensitive to the kinds of very specific changes that the therapy was
designed to achieve; nevertheless, these specific changes may have effects in
real life (cf. Howard, 1986).
A more sceptical view would point out that despite, in British terms, a
huge amount of therapy (12 weeks × 3 days × 4.5 hrs = 162 hours), we have
not managed to make any real change in his overall language abilities. That
Lawrence said positive things about being part of the clinic can easily be
discounted. He put a huge amount of time and effort into it; it is very hard
to see something in which so much has been invested as anything other than
worthwhile. Moreover, Lawrence is well aware of the time and effort clini-
cians put into the therapy; simple politeness requires that he say positive and
appreciative things about the clinic. The sceptic could go on to argue that
the only measurable result was that Lawrence could pick up the films from
Woolworth’s by himself—for some perhaps, not a change worth the effort.
The discordant pattern of results simply raises the question of what we
mean by “benefit” from therapy. Subjective comments on change may not
match objective measures of change. This may occur in either direction.
What do we count as improvement? Improvement could be in targeted
skills, formal testing, conversation, psycho-social aspects, the client’s view of
change, or any combination of these. One might protest that all of these are
valid, and change in any is a worthwhile objective. Or one might put prim-
ary weight on one particular kind of evidence: perhaps on “formal” testing
of language impairments because these measures are stable and reliable;
perhaps on changes in social participation because the ultimate aim of the
therapy is at just this level—although, as Elman and Bernstein-Ellis (1999)
noted, it is very difficult to document such changes at more than an anec-
dotal level. These questions may have no simple answers, but they raise a
number of uncomfortable issues about what we value and why.
When considering how we evaluate change, we must recognize that dif-
ferent kinds of evidence will be more likely to be persuasive to different
audiences. For people with aphasia the perceived changes and benefits are,
presumably, the most important outcomes. People commissioning services,
on the other hand, are much more likely to be persuaded by more solid
evidence from grounded assessments. Many therapists are, like us, anxious to
explore the complex relationships between changes at different levels, recog-
nizing that each has value, but of different kinds.
The “autocue” strategy

The therapy approach for word retrieval we ended up using with Lawrence
was based on Nickels’ (1992b) “autocue” method. Where a person with
aphasia can access the initial letter(s) of a word they can’t produce, they can
fall back on the strategy of using their knowledge of letter-to-sound corres-
pondences to generate a phonemic cue to aid word retrieval. Like Nickels
(1992b) and Bastiaanse, Bosje, and Franssen (1996), we were able to show
that this method was effective, to the extent that picture naming improved
during therapy. And we know from the interview with Lawrence and Patricia
that he does attempt to use this strategy at home. In the group we encour-
aged Lawrence to use this method when he had word retrieval problems.
While this was sometimes effective, often it was not. The process of course
requires that the correct initial letter is found; that the correct phoneme is
generated from the letter; and that the person with aphasia can use this cue
to produce their target. If any of these goes awry, failure is likely to follow.
Moreover, engaging in this sequence is attention- and time-demanding.
Speaking is itself attention-demanding (holding what you are trying to com-
municate, how far you have got in this, and so on). It is not straightforward
to combine this with the complex word retrieval strategy. Because it is
time-demanding, even in the tolerant context of the group, there is a danger
that during the (possibly lengthy) pause the speaker will be interrupted and
lose the floor. As Holland (1998) notes, this process can be “extremely
laborious” and difficult to integrate into conversation.
The more the use of this strategy can become automatic, the less time-
and attention-demanding it will become. As Luria (1947) emphasized, there
is a real need to overlearn the component skills so that they can be com-
bined relatively effortlessly in the reconstitution of function. It may be that
Lawrence was less successful with this strategy because he had not acquired
all the component skills with enough skill and automaticity. But it may be
the case that this strategy can never be truly automatic. Its role may be more
as a fall-back to use when confronted by moments of conversational break-
down and when it is successful as a form of self-therapy—producing a word
in response to a phonemic cue does make it more likely to be retrieved later
(Hickin, Best, Herbert, Howard, & Osborne, 2002).
While strategies such as this are attractive methods to use in therapy,
because they provide a general (non-item-specific) means of dealing with word
retrieval failures, we need to recognize that implementing them in real-life
conversation may be more problematic than in formal tests of naming.
Group and individual therapy

Coming to the aphasia clinic involves a combination of group and individual
sessions. In describing Lawrence’s therapy we have provided much more
detail about the content of the individual sessions. This is because the indi-
vidual sessions are highly structured. The benefits, as we see them, of the
group sessions are less tangible and less easily described and measured; and,
indeed, as others have noted it is very hard or impossible to identify the
important elements. In our view, the individual and group therapy play
complementary roles and both are important.
During group sessions, people with aphasia have the opportunity to pract-
ise and implement techniques learned in individual sessions, in a social
context that approximates more closely to the “real” outside world; it has the
advantage that it is a relatively safe, sympathetic, and supportive environ-
ment. Other members of the group, both people with aphasia and therapists,
can give real feedback on the successes and failures of communication. It
offers opportunities for learning from, and sharing with, other people with
aphasia about communication strategies that can be used, about ways of
dealing with being a person with aphasia. In particular, it is possible to learn
from other people with aphasia about activities that one can do, such as
fishing, tennis, computing, and so on. This is a much more effective way of
extending the range of activities that people can engage in than any kind of
support and encouragement from a therapist. And, perhaps most important,
it offers support, sharing of experiences, and solidarity.
Our clients are more sceptical than we are about the value of group
therapy. While we see the group sessions as complementing and building upon
the individual sessions and particularly offering opportunities for learning
from each other, many of our clients are much less convinced of their value.
For most of our participants, the group sessions they feel to be most beneficial
are therapist-centred. Lawrence was fairly typical in seeing the real therapy
as taking place in one-to-one sessions. He had little positive (or negative) to
say about his time in the group, describing it simply as “too easy”.
Therapy 7 years post-onset

As has been widely documented, the period immediately after a stroke that
results in a person becoming aphasic is a turbulent time. The person with
aphasia needs to come to terms with changes to their social role and activ-
ities they can participate in, and to cope with possible physical problems,
in addition to the language difficulties. They also, typically, have a complex
series of involvements with different therapies and different stroke services.
This is also the period when the majority of input from speech and language
therapists happens.
The early period after a stroke is also the period of most rapid “spontane-
ous” recovery, which typically happens most rapidly in the first few months
post-onset and then at a decelerating rate, although this pattern is undoubt-
edly variable between individual people. The rationale for early intervention
is, as Schuell, Jenkins, and Jimenez-Pabon (1964) argued, that one might be
able to capitalize upon and shape the progress of spontaneous recovery,
using perhaps the brain plasticity that may be greatest in these early stages.
While Lawrence had had organized, intensive, and effective therapy in the
early period post-onset (see Grayson, Franklin, & Hilton, 1997), he had, at
the point when we saw him, only the vaguest of memories of this early
therapy that lasted for more than a year.
In the 7 years since the onset of his aphasia, Lawrence had inevitably
come to some kind of accommodation with the limitations and difficulties this
imposed on him. He relied heavily on his wife Patricia, as a communication
partner and communication facilitator. But he was also anxious to engage in
the world outside, as exemplified by his wish to undertake a computer course.
When he started his therapy with us, Lawrence had a strongly felt need to
have more help, and both he and Patricia felt this would not have been
possible earlier. Even when he spoke negatively about therapy, he continued
to attend for 3 days per week and returned for his final assessments. While
he was very positive about the idea of more intensive therapy before it
happened (in prospect) and after it had happened (in retrospect), there was
a mismatch with how he responded during his therapy, when he was often
not especially positive. While this might have been because his experiences
during therapy did not meet his needs and wishes, it may have been because
the process of therapy challenged a set of established views about him as a
person with aphasia, and a well-developed set of strategies for dealing with
his communication needs. Willingness to engage with a process of change
does not make that change any less difficult.
This raises issues of when therapy is appropriate for clients, given that
Lawrence did have considerable amounts of therapy in the early stages
following his stroke. So, one aspect of this is considering the “window(s)”
of time when therapy might be appropriate. It is possible that, at least on
average, large-scale language change is unlikely when therapy is undertaken
at a point very long post-onset. Change may be limited by, at brain level,
limited plasticity, and by effective and well-developed strategies for living
with aphasia. However, there is substantial evidence that even a long time
post-onset, motivated people with aphasia can make substantial improve-
ment with well-organized and intensive therapy (e.g., Basso, Capitani, &
Vignolo, 1979), and we have seen the same, but they do not always do so.
Nevertheless, one has to question why, in this country and elsewhere,
such a small proportion of speech and language therapists’ time and effort is
used to engage in therapy with people with aphasia once they are over the
early turbulent period. People who have come to terms with being language-
disabled, who know about the limitations and possibilities it places on their
lives, may be able to engage with more dedication and motivation in struc-
tured and intensive therapy to address particular areas that are of concern to
them. It may be that intensive therapy may be more efficient at this stage; as
far as we know there is no convincing evidence on this issue yet.
Education in Britain is seen as a life-long process, where people should be
able to undertake courses to meet their educational needs at any point in
their lives. This aim is largely, although perhaps not wholly, met. Rehabil-
itation, on the other hand, is seen as something that is undertaken in the
early stages after the onset of the “disabling condition”, and then ceases. We
do not see why (aside from difficulties about the limitation in resources that
really only reflects political will), therapy for people with aphasia should not
be a service/process that people can access when they want to address par-
ticular needs at any point in their lives.
ACKNOWLEDGEMENTS
We are grateful for the help and cooperation of Lawrence and his wife
Patricia (both names are pseudonyms); The Tavistock Trust for Aphasia for
financial support; Janet Webster for help in data analysis; Alison Furness for
permission to quote from her interviews with Lawrence and his wife; and all
the students and staff working within the clinic.
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158 Kagan and Duchan
10 Consumers’ views of
what makes therapy
worthwhile
Aura Kagan and Judith Felson Duchan
Speech-language pathologists have long advocated for consumer involve-

ment in setting goals and evaluating the success of therapies. One would be
hard put to find a practising clinician or researcher in our field who would
fail to see the advantages of involving clients in their own goal setting or in
evaluating their own therapy progress.
Many speech-language pathologists use tools that are specifically designed
to elicit input from consumers. For example, clinicians have conducted indi-
vidual interviews with clients to find out their goals and their judgements
about therapy progress (Pound, Parr, & Duchan, 2001; Simmons-Mackie &
Damico, 2001). They have also interviewed individuals in groups and have
used consumer satisfaction surveys and questionnaires to learn what con-
sumers think about the services they have received (Rao, Blosser, & Huffman,
1998). They have designed therapies, such as Person Centered Planning,
that require consumer input for evaluating success (Duchan & Black, 2001;
Mount, 2001; Sanderson, 2000).
Information from individual interviews and groups has been used to conduct
research as well. Clinicians have involved clients in self-evaluation research
(Pound et al., 2001), action research (Horton, 1999), and research leading to
the design of evaluation instruments (Lomas, Pickard, & Mohide, 1987).
These approaches to evaluation represent a move towards more consumer-
led approaches and stand in contrast to objective and clinician-controlled
approaches to evaluation that are typically used to judge the worthiness of
therapy approaches. Generally speaking, objective controlled approaches do
not take into account evidence having to do with the personal experience
of consumers. ( Note: The term “consumer” is one that is in common use in
North America to refer to those to whom services are provided.)
This chapter reflects our interest in the views of consumers who still have
aphasia post therapy; consumers who can reflect on what constitutes success-
ful outcomes, based on their years of experience in living with aphasia. We
will divide the chapter into several sections. First, we will examine clinical
and research frameworks that facilitate or inhibit authentic consumer input
to therapy evaluation. We will then describe examples of consumer consult-
ing approaches that have been used to evaluate aphasia therapies. Following
10. Consumers’ views of therapy 159
that, we will offer some methods that we specifically designed to overcome
barriers to contribution by those with aphasia and will present the views of
selected consumers who are experienced in living with aphasia on what
makes therapy worthwhile. Finally, we will contrast the ideas of success put
forward by these consumers with those found in existing consumer consult-
ing approaches. We will conclude by suggesting ways to obtain authentic
input from consumers about complex topics related to therapies.
EXAMPLES OF EVALUATION FRAMEWORKS USED IN

RESEARCH AND CLINICAL PRACTICE
Speech-language pathologists, like all practitioners, base their evaluation

practices in conceptual frameworks (e.g., Byock, 1999; Duchan, 2004). These
frameworks govern the dimensions evaluated, and methods of evaluation, as
well as the degree to which consumers are consulted in the creation of
evaluation instruments and in the determination of their own success. They
also influence the larger issue of who is regarded as the “expert” in the
evaluation of outcomes. The influence of different frameworks provides pos-
sible reasons for the gap between what clinicians think should be done and
what they are actually doing to involve consumers in therapy evaluation.
Perhaps the most commonly used framework is the medical model. Based
on the diagnosis and elimination of physical disease, the medical model
tends to portray the goal of intervention as a return to health. The aim of
therapy and definition of success is to cure a disease or eliminate its symp-
toms. The approach to evaluation is influenced by the fact that this model is
grounded in a restitution narrative in which a person’s progress is seen as
being along a pathway of return to an original, normal self (Becker, 1997;
Frank, 1997; Pound, Chapter 3, this volume). There is little attention given
to evaluating how patients cope with incurable diseases.
The medical model rests on the assumption that professionals are the
experts who should be in charge of therapy decisions. It is argued that
professionals have knowledge of research literature as well as the clinical
experience needed to make informed clinical decisions. It follows from this
line of thinking that professionals are in the best position to select and
evaluate therapies. Consumers are seldom given an opportunity under this
model to provide information about what else might have been done that
would have made a difference in their lives. Nor are consumers consulted
about their personal judgements about their improvement even in those
areas being targeted in the study.
The medical model, when used to evaluate the success of treatment, is
often associated with evidence-based practice, an approach that relies
primarily on the use of objective standardized measures (Robey, 1998).
Most researchers and agencies engaged in evidence-based practice call for
well-controlled experiments with repeated trials. Performance of clients is
measured before and after the administration of a given therapy to deter-
mine whether the therapy produces statistically significant effects. The re-
search is often based on the performance of large groups of individuals on
objective tests. The measures of improvement have been ones decided upon
by clinicians or researchers, with little attention paid to whether the changes
have had an impact on the ability of consumers to participate more fully in
society. The focus of these studies is often on what has been accomplished
by a very specific therapy.
A second framework commonly used by speech-language pathologists to
determine treatment and therefore indicators of clinical success, is the
psycholinguistic model. In this framework, communication is seen in terms of a
linguistic code made up of various levels of linguistic information ( phono-
logy, morphology, semantics, syntax) that is used to comprehend or express
messages. Therapy success in this framework involves improvement in
processing linguistic information. Clients are evaluated for changes in their
abilities to comprehend or produce sounds, words, or sentences or to pro-
cess discourse.
Although the psycholinguistic model differs from the medical model in
that it does not focus on illness, it does implicitly adhere to the restitution
narrative and also regards the clinician as the expert. Consumers may be
asked to rate their own improvements in various areas of linguistic compet-
ence, but in very general ways, since a full evaluation would require detailed
knowledge of linguistic systems and of language processing. In other words,
there is an information barrier to consumers in either providing expertise in
the construction of evaluation tools or participating meaningfully in the
evaluation of their own progress.
Subscribers to the psycholinguistic model also tend to favour the use of
standardized instruments and well-controlled experiments as a means for
obtaining evidence of the success of therapies. In this case, the dimensions of
success are psycholinguistic ones, and the instruments and experiments are
designed to reveal improvements in one or more psycholinguistic domains.
A third framework evaluates changes in functional communication. The main
emphasis in this framework is to evaluate a client’s communicative inde-
pendence in situations of daily living (Holland, Frattali, & Fromm, 1999).
An item on an evaluation instrument cast in this frame might involve rating
a person’s ability to order food from a menu in a restaurant. Those with
aphasia have been found to perform better on functionally based tools than
they have on ones that focus primarily on their language abilities (Aten,
Caliguiri, & Holland, 1982). Tools in this framework often aim to capture
the degree of independence and /or burden of care.
A fourth clinical evaluation framework has been called a person-centred
approach. The name originates with therapists working with individuals
who have severe communication disabilities (for recent reviews see Holburn
& Vietze 2002; Mount, 2001) and involves evaluation of services from the
point of view of the clients receiving them. This framework has also been
Table 10.1 Core values in the life participation approach to aphasia
(adapted from LPAA, 2000, 2001)
• The explicit goal is enhancement of life participation

• Everyone affected by aphasia is entitled to service
• Both personal and environmental factors are intervention targets
• Evaluation of outcome includes documented life enhancement changes
• Emphasis on availability of services as needed at all stages of aphasia
part of the thinking in a recent model proposed by The World Health

Organization (WHO, 2001). WHO’s International Classification of Function-
ing ( ICF) represents a significant advance in its recognition of the import-
ance of evaluating “participation” as well as body function and activities.
Participation, however, is very narrowly defined and grouped together with
activities. Furthermore, participation is evaluated by the healthcare profes-
sional, as in the medical and psycholinguistic models, rather than by the
consumer. This is reinforced by the fact that the evaluator using the ICF
must become familiar with the technical codes. Nonetheless, the ICF frame-
work does leave considerable room for consumer input and, in our view, in
order to be true to the model, the individual (personal) perspective needs to
be explicitly included.
Finally, we are among a group of clinicians and researchers in North
America who have proposed a person-centred framework for use with those
who have aphasia. In this framework, called the Life Participation Approach
to Aphasia (LPAA), consumer involvement is central because life parti-
cipation is the explicit goal of treatment and the key area to evaluate (see
Table 10.1). To use LPAA effectively, consumers must be actively involved
in goal selection and must be regarded as the experts in evaluation of their
own progress.
Judgements about therapy successes for individuals are based on whether
the consumer perceives positive changes in “living with aphasia”. Consumers
therefore are the ones who are in the best position to judge therapy success.
This framework requires authentic consumer involvement in order to ensure
that the therapy has been relevant and that it has had a positive effect on
their everyday lives.
In summary, the conceptual frameworks used by clinicians and adminis-
trators vary in the degree to which they incorporate consumer input. The
medical model, one that casts the professional as sole expert and that aims
towards the elimination of disease, affords little room for consumer input.
Its accompanying experimental scientific approach relies on well-controlled
instruments selected by the researcher. Similarly, the psycholinguistic model,
requiring detailed knowledge of the linguistic system and its processing,
allows for only cursory consumer input from consumers who are naive in
these matters. The psycholinguistic model also favours objective experi-
mental indicators when gathering evidence for therapy success.
The two frameworks that afford more room for consumer input are the
ICF framework of the World Health Organization and the LPAA frame-
work offered by a group of American and Canadian speech-language
pathologists (LPAA Project Group, 2000, 2001). The ICF does not go as
far as the LPAA framework in terms of necessitating consumer input on the
evaluation of life participation. However, both models take into account
the importance of treatment and evaluation related to coping with a dis-
ability rather than solely on curing it. In doing so, both require a focus on
the lives of consumers.
CONSUMER-BASED INSTRUMENTS FOR EVALUATING

THERAPY SUCCESS
Perhaps the most commonly used type of instrument for involving con-
sumers in the evaluation of therapy success is the consumer satisfaction survey.
These surveys usually involve a list of items in which consumers rate the
quality of the service provided to them. The listed items usually have to do
with aspects of service delivery and their own improvement. For example, a
survey developed by the American Speech-Language-Hearing Association
(1989), framed within a functional model, has 21 items grouped under seven
themes. The themes are (1) the timeliness of the service, (2) the improve-
ment made by the consumer, (3) the demeanour and courtesy of the clinician
and support staff, (4) the knowledge and organizational skills of the clinician,
(5) the quality of the physical facility, (6) the management of clinical service
programme, and (7) an overall rating of the service. The consumer is asked
to circle the best answer along a 5-point rating scale ranging from strongly
agree to strongly disagree. They also have the option of circling NA (not
applicable).
In the ASHA Consumer Satisfaction measure, there is a strong emphasis
on the nature of the services provided. Of the 21 items across all of the seven
themes, all but six have to do with the delivery of services, including timeli-
ness, courteousness, management of schedule and referrals, expertise of the
clinicians, and the environment. Three of the six remaining items require an
overall evaluation of the service (overall satisfaction, whether they would
come back, and whether they would recommend the service to others). The
last three items concern the specific progress made by the client—one hav-
ing to do with whether they are better, another about whether they have
benefited from the service, and a third whether the newly acquired skills are
retained after the programme ended.
A second type of consumer-based instrument is exemplified by the Com-
municative Effectiveness Index (CETI) developed by Lomas et al. in 1987.
Like the ASHA FACS (Frattali et al., 1995), the CETI was designed within
a functional frame. In the CETI, the consumers are the spouses or another
person closely affiliated with the person with aphasia. The consumer rates
the person’s interactive skills (from “not at all able to” to “as able before the
stroke”). The items range from functional goals such as “Getting someone’s
attention” and “Giving yes and no answers appropriately” to “Having a one-
to-one conversation with you” and “Describing or discussing something in
depth”. The CETI is unusual in that consumers were directly involved in its
creation.
A third type of consumer instrument is one that focuses on quality of life
issues. For example, the Short Form 36 Health Survey (Ware, Snow, Kosinski,
& Gandek, 1993) has been developed to determine the health and quality of
life of those with disabilities. This rating scale to be filled out by consumers
is designed to measure eight dimensions of quality of life: physical function-
ing (10 items), role limitations due to physical health problems (4 items),
bodily pain (2 items), social functioning (2 items), general mental health
(5 items), role limitations due to emotional problems (3 items), vitality,
energy, or fatigue (4 items), and perception of general health (5 items).
Each of the above examples of consumer-based instruments has been used
to evaluate aphasia therapy. They all involve standardized instruments in
which consumers rate their progress along predetermined dimensions. The
dimensions for most of the instruments have been determined by profes-
sionals and have to do with aspects of service delivery and improvements in
various areas of communication or in overall health. Few have involved full
consumer participation, in that the consumers have not been provided the
opportunity to determine what dimensions of success are relevant for their
particular circumstances. Nor have the instruments come to grips with how
to surmount barriers for achieving consumer participation with consumers
who have aphasia ( but see Hilari, Byng, Lamping, & Smith, 2003 for a
recent attempt to overcome this deficiency).
OVERCOMING BARRIERS TO CONSUMER

PARTICIPATION
Clinicians who include consumer input in their practice typically do so by

involving individual consumers in the process of setting their own goals or
evaluating their own therapy. As a field, we have been less likely to pay
attention to the expertise of the group of consumers who have been living
with aphasia in the long term. This “attitudinal” barrier may be due in part
to the influence of the medical model with its focus on curing rather than
coping with long-term disability. It may also be due to the fact that most
clinicians rarely come into contact with individuals who are no longer re-
ceiving aphasia therapy but are living with the consequences of aphasia.
While these individuals with aphasia may hope to return to their former
selves, they seldom can. They, as well as those with other types of chronic
disabilities, often shift their hopes somewhere along the way, from full
recovery of their communication abilities to being able to live satisfying
lives, given their aphasia (Becker, 1997; Parr, Byng, & Gilpin, 1997; Pound,
Chapter 3 this volume). By not paying sufficient attention to the views of
consumers with chronic aphasia, our evaluation tools may be missing out-
comes critical to success in living long term with aphasia.
A second barrier to full consumer consultation is inherent in the
psycholinguistic framework that requires detailed technical knowledge of
psycholinguistic processing. If psycholinguistics is taken to be the frame-
work of evaluation, aphasia therapy success would be assessed by whether
clients have improved in, say, their word-finding skills. To involve con-
sumers fully in the design of a psycholinguistic instrument and in the evalu-
ation of their own success would require that they too become familiar with
the intricacies of psycholinguistic processing.
A third possible reason for the lack of widespread consumer consultation
in the area of aphasia has to do with the issue of language barriers. It is
especially difficult for consumers with aphasia to provide authentic, valid,
and complex feedback about their therapies because of their language diffi-
culties. Standardized consumer satisfaction surveys are not readily accessible
to clients with language difficulties and consumer interviews involving the
evaluation of therapies are difficult to conduct. (However, see Parr et al.,
1997, for an outstanding example of how this has been done.)
We were interested in exploring methods for overcoming the barriers by
(a) specifically targeting individuals who had at least a few years of experi-
ence in living with aphasia and who were therefore in a position to reflect
back on their experience, thus acknowledging their unique contribution; (b)
asking our questions within a life participation framework where they have
knowledge and expertise because the subject matter was their own experi-
ence; and (c) providing support in order to get around the language barrier.
Targeting individuals who have experience in

living with aphasia
The individuals who agreed to share their views with us have read what we
have written about them and have chosen to use their own names. They
have all received speech-language therapy and have had life experience
in living with aphasia. They are currently regular participants in different
activities at the Aphasia Institute in Toronto, Canada.
Prior to her stroke Pam Phillips worked as an office manager. She cur-
rently volunteers full-time at the Aphasia Institute. We were interested in
Pam’s views on dimensions of success for herself personally and for others
with aphasia, as she has had extensive experience in living with aphasia.
George Carter used to work in sales. He now participates as a member in
conversation groups and recreational activities within the Aphasia Institute
and also volunteers on an aphasia advocacy committee. Both Pam and George
have mild to moderate aphasia. We spoke with them individually and
together using a videotaped semi-structured interview format.
We also spent some time talking to other consumers at the Aphasia Insti-
tute in small groups. These consumers added to the ideas generated by Pam
and George. Don Lingeman is a retired pharmacist who had a stroke in
1990. Like Pam, Oriana Quilici had a stroke in her twenties. At the time of
the stroke in 1990, she was working as an accountant. Betty Wangenheim is
a retired sociologist who had a stroke in 1999. Both Don and Oriana have
moderate aphasia. The aphasia is obvious and does get in their way in some
situations that are communicatively demanding. Betty has mild aphasia.
Discussion focusing on life experience

of consumers
The project was framed for participants in terms of the following question:
What makes therapy worthwhile? We conveyed this question in various
ways, attempting to find out what they felt was worthwhile about therapy,
given the investment of time, effort, and resources for all involved with
aphasia (namely, consumers, speech-language pathologists, and funders). We
explored the topic that we were investigating—why therapy was considered
to be worthwhile—in light of the fact that many people will still have com-
munication problems after therapies are over. Our specific aim was to find
out whether consumers who have lived with aphasia for some time suggest
different areas for evaluating success than those typically found in profes-
sionally designed instruments.
We interviewed our participants about what they felt they had achieved in
their own therapies. Guiding questions and prompts were used to elicit their
reflections. Pilot work helped us to create communicative prompts that were
not too leading. We supported our consumers in thinking beyond their own
particular life experiences so they could comment on potential indicators of
success for others. The guiding questions about themselves included:
• Are there GOOD parts to your life right now?

• What are they?
• Are there FRUSTRATING things in your life right now?
• What are they?
• Why can’t you do/enjoy X?
• What would help?
• What were stages of your success?
• How did you know things were getting better? (in the areas of success
that ended up in the pie diagram described below).
Finally, in order to elicit more abstract thinking we asked our participants

to relate their own experience to the dimensions of success that could be
used when evaluating aphasia treatment in general. We did this by relating
the specific aspects of their own experience to more general recommenda-
tions.
Getting around the language barrier and
eliciting responses to a complex topic
As we learned through our pilot work, it is challenging to make our topic
accessible to individuals with language problems. In addition, the notion of
therapy success is abstract and difficult to talk about, even for those who do
not have language difficulties. The language barrier made it especially dif-
ficult for our consumers to indicate the relative importance of different
indicators of success that they had chosen.
In order to meet the challenge of the language barrier, we provided spe-
cifically designed support as indicated below:
• A written, abbreviated version of the large question: What was worth-

while about your therapy?
• Flashcards with a large written version of the individual question prompts
listed above.
• A drawing of steps, used to support conversation about therapy progress
over time.
• A pie diagram with flexible sections that allowed participants to attri-
bute degree of importance to selected dimensions of success. When
using the pie, we worked together with the participants to help them
prioritize different areas of success. They placed a success domain in a
particular segment of the pie and then indicated the size of the segment
by moving the flexible “hands” or indicating the segment size as we
moved the hands (see Figure 10.1 in results section for an illustration of
the pie).
• Using Supported Conversation for Adults with Aphasia (SCA)™ as a
framework (Kagan,1998a, 1998b), we checked with consumers through-
out the interviews to make sure that they understood the topic and that
we had understood what they had to say. We also provided them with
alternative ways to respond. For example, we used gestures, rephrasing,
simplified language, written key words, and drawings, within the context
of natural conversation.
Analyzing the results of consumer participation

Our interpretative analysis was based on notes and observations of videotapes
of the conversations. Using the notes and observations, we classified the
responses of our participants into similar topics.
When interpreting our participants’ comments, we asked ourselves “What
is this comment about?”. For example, several participants talked about their
speech improving in the context of a conversation of what makes therapy
worthwhile. We classified these comments together under the topic “talking
better”. Similarly, in the context of the prompt “Are there good parts to
your life right now?” a participant talked about the importance of her being
Figure 10.1 Pie diagram showing relative degrees of therapy success for Pam.
able to drive again. This comment was classified under the topic of being
independent.
When appropriate support was provided, the consumers we interviewed
were able to converse in abstract, authentic ways. They reflected back on
their experiences with aphasia therapies and responded to abstract questions
such as the primary guiding question of “What makes it all worthwhile?”.
Although it was challenging, they were able to step out of their own life
experience and reflect on the dimensions of success that they felt should
be guiding therapy and evaluation of outcome. The consumers were also
able to use the diagrammatic pies to portray the relative importance of
different dimensions in terms of different allocation of resources. Some
topics describing success that were put forward by the consumers were as
follows:
Talking better
The speech pathologist put pressure on my larynx and I could talk and it was the
weirdest thing and I thought I’m cured. Then I realized I can’t talk and just
work on it. The speech pathologist was encouraging. He motivated. Just go
ahead and keep going . . . Try to phrase the words. Rochelle was encouraging
me to speak
(Pam)
Getting out more, doing more

You have to get going. Doing, doing, doing
(Don)
Having hope
The hope is getting on in life. You have to have hope otherwise you’re a
nobody
(Don)
Having fun, enjoying life

Ask them to come in and watch the fashion show
(George talking about hope and ability to enjoy life)
Having satisfying relationships

You ask he, girl, the man, are you OK with all the different kids, your friends?
(Don talking about how to find out how people
with aphasia are doing)
Having self-esteem/confidence
You can do it because you are right in your heart
(Don)
You get the confidence to talk about aphasia

(Pam)
Feeling in control
Ten years ago, no. Now, ok.
(Oriana talking about changes in feelings of control over her life)
Being independent
My car . . . my baby
(Oriana talking about the increase in her sense of
independence resulting from her being able to drive a car)
Helping others
Help retirement, full of joy. Oh wow! Happy, ecstatic
(Oriana talking about how important volunteering
was in learning to live with aphasia)
Other dimensions included: improved communication skill of family members,

feeling better (e.g., less anger) and improving academic skills (e.g., maths).
COMPARISON OF DIMENSIONS OF SUCCESS

BETWEEN OUR CONSUMERS AND EXISTING
CONSUMER-BASED INSTRUMENTS
Because of our particular line of questioning, the topics offered by the

participants focused on engagement in life (e.g., getting out more, having
fun) and psychological outlook (having hope, having self-esteem/confidence).
These topics differ from those underlying many consumer satisfaction surveys
in current use in aphasia treatment. For example, the ASHA Consumer
Satisfaction survey focuses on service delivery features having to do with the
clinician, the clinic environment, and the way services are rendered. These
dimensions were not raised in the comments made by the veteran consumers.
The topics introduced by our consumers are also different from those
included in published tools that compare past and present performance on
specific communication tasks. Talking better, for example was only one of
the topics covered by our participants. However, this increased breadth in
areas covered should not be interpreted as a lack of emphasis or concern of
our participants about communication.
A recent study conducted in South Africa (Band & Legg, 2001) supports
our findings about the concern of people with aphasia about broad issues
related to life engagement. Using Supported Conversation, the investigators
interviewed ten consumers with aphasia as well as five caregivers on their
perspectives on speech-language therapy. Four primary themes emerged from
the data analysis related to areas that consumers felt were important: self-
empowerment, the external environment, life participation, and emotional
well-being.
CONCLUSIONS AND IMPLICATIONS
Our consumers were able to reflect on the impact the therapies had on their
own success as well as to recommend what therapy outcomes might be of
importance to others with aphasia. They offered indicators of success that
were different from those found in existing instruments. Their recommenda-
tions and indicators were related to the life goals of the client rather than
the quality of the services provided. Their topics fit well with the life participa-
tion models of aphasia. The consumers were pleased to have participated
in the study and were enthusiastic about a role they might play in determin-
ing criteria for judging the success of their own therapies as well as therapies
of others who are living with aphasia.
Our findings show that consumers who have had aphasia for a period
of time can be valuable consultants to speech-language pathologists in the
design of consumer input instruments for evaluating clinical outcomes.
Current approaches to consumer involvement in aphasia service provision
tend to be confined to having consumers evaluate the quality of the service.
Our consumers focused more on life participation topics, such as whether
the services resulted in people getting out and doing more, having more
satisfying relationships, and being more independent.
Speech-language pathologists often focus strictly on the processing and
delivery of the communicative messages when designing their indicators of
improvement. For example, instruments showing communicative changes
often include items evaluating changes in sentence structure, language
comprehension, ability to exchange information, or abilities to maintain
topics in a conversation. Our consumers treated communication in social
terms, focusing on life participation dimensions.
Our results also show promise for increasing the involvement of consumers
in the course of their own therapies. Supported conversation techniques,
such as those used in this study, allow consumers to become authentically
engaged in the setting of their own goals and tracking their own communic-
ative progress.
Providing conversational supports, conducting semi-structured interviews,
and working from the personal to the general are methods that show promise
for involving consumers with communication disabilities in the evaluation
of clinical services. In particular, the pie diagram has applications in many
contexts where individuals who know more than they can say are asked to
think about and prioritize items.
For many individuals and families affected by aphasia, the sole focus in
the early stage of living with aphasia is on learning to talk again. Based
on the views of our consumers who have the benefit of hindsight, we sug-
gest that even in the early stages, therapy should occur within a broad
participation-based framework that focuses on communication within a
social context related to issues such as role, social relationships and life
activities.
The purpose of our project was to broaden our views of therapy success
by obtaining the perspective of a few consumers living with aphasia. The
views of our participants and the use of this type of methodology should be
kept in mind when developing instruments to evaluate the success of therapy,
and when involving consumers in their own therapy planning and evaluation.
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Author index
Agar, M., 103 Chafe, W., 91 Fougeyrollas, P., 71

American Speech-Language- Chapey, 71 Frank, A., 41, 42, 96, 159
Hearing Association, 162 Churchill, W., 20 Franklin, S., 135, 155
Aten, J., 160 Clark, P., 107 Franssen, M., 153
Atkinson, M., 103 Cloutier, R., 71 Franz, S., 19, 20
Coltheart, M., 137 Frattali, C., 24, 25, 160,
Backus, O., 20 Cote, J., 72 162
Band, T., 169 Cote, M., 72 Frazier, C., 20
Barlow, J., 39 Cousins, N., 107 French, S., 37, 38, 47
Barrow, R., 40 Crystal, D., 85 Freud, S., 109
Bartolome-Rull, D., 106 Csikzentimihalyi, M., 39, 79 Fromm, D., 160
Basso, A., 156 Fry, W., 107, 108
Bastiaanse, R., 153 Damasio, A., 19
Becker, G., 159, 164 Damico, H., 104 Gailey, G., 131
Berger, A., 101, 104, 110 Damico, J., 23, 79, 104, 158 Gandek, B., 163
Bergeron, H., 71 Dana, R., 112 Garcia, L., 71
Berghoff, P., 111 Dass, R., 79 Gerstenberger, D., 75
Berk, L., 107, 108 Davidson-Katz, K., 108 Gillikin, L., 106
Berndt, R., 119 Davis, G., 24, 104, 106 Gilpin, S., 19, 23, 40, 97,
Berndt, R., 137 Davis, M., 104 164
Bernstein-Ellis, R., 23, 75, de Partz, M., 122, 140 Glass, T. A., 26
132, 153 Derks, P., 106 Glenn, P., 102
Best, W., 154 Drummond, S., 101 Goffman, E., 103
Bester, S., 162 du Pre, A., 104, 106 Goldstein, K., 19, 20
Black, M., 137, 158 Duchan, J., ix, 1, 6, 8–18, Goodman, N., 101
Blosser, J., 158 71, 158–172 Goodwin, C., 102
Bogart, E., 106 Granich, L., 20
Bosje, M., 153 Ehrlich, P., 56–57, 65 Grayson, E., 135, 155
Broadbent, D., 19 Eisenhower, D., 20 Greenhalgh, T., 41
Brooks, R., 102 Elbard, H., 162 Gumperz, J., 103
Brown, P., 104 Elman, R., ix–x, 5, 8, 13, 14,
Buckman, E., 107, 110, 114 16, 23, 71, 75, 130–133, Haendiges, A., 119
Butfield, E., 20 153 Hatfield, F., 142
Buxman, K., 102 Emerson, J., 104 Hatfield, M., 85
Byng, S., ix, 1, 8–18, 19, 22, Englehart, P., 102 Head, H., 20
23, 40, 55, 63, 65, 71, 97, Erdman, L., 109, 112 Helman, C.,
137, 163, 164 Evans, M., 83 Herbert, R., 154
Byock, I., 159 Heritage, H., 103
Farmer, P., 86 Herth, K., 102, 109
Caliguiri, M., 160 Fawcus, M., 23 Hickin, J., 152
Capitani, E., 156 Feeney, T., 95 Hilari, K., 163
Cariski, D., 39, 60 Ferketic, M., 162 Hilton, R., 135, 155
Carr, T., 126 Finlayson, A., 162 Hinckley, J., 126
Cassell, E., 22, 98 Folkman, S., 75 Holburn, S., 160
174 Author index
Holland, A., x, 5, 8, 13, Maddox, G., 26 Saffran, E., 137
14, 16, 23, 85, 98, 99, Marshall, R., 101 Sanderson, H., 158
112, 118–129, 154, 160, Martin, R., 108 Sandson, J., 119
162 Masumura, S., 108 Santa Claus, 111
Holman, H., 39 Mazonson, P., 39 Sarno, M., xii, 2, 8, 9, 10,
Horner-Catt, J., 28 McBride, K., 20 11, 12, 14, 15, 19–31
Horton, S., 158 Mills, C., 19 Schegloff, E., 102
Howard, D., x, 6, 8, 10, 11, Mirriam-Webster, 101 Schuell, H., 58, 155
16, 134–157 Mitchum, D., 119 Schwartz, M., 137
Huffman, N., 158 Mohide, A., 158 Shadden, B., 64, 77
Hurwitz, B., 41 Morris, J., xi, 6, 10, 11, 16, Sheehan, V., 20
37, 134–157 Shelton, J., 122
Ingham, S., 20 Morton, J., 141, 142 Simmons-Mackie, N., xii, 4,
Ireland, C., 19, 23, 40, 46, Mount, B., 158, 160 8, 9, 13, 14, 16, 23, 45,
47–49 Murphy, J., 102 71, 79, 101–117, 158
Isserlin, M., 19 Simpson, S., 40
Newborn, B., 22 Sims, 59
Jefferson, G., 102 Nickels, L., 122, 137, 140, Singer, B., 73, 77
Jenkins, J., 155 141, 144, 153 Smith, S., 163
Jennings, B., 28, 29 Nielsen, J., 20 Snow, K., 163
Jimenez-Pabon, E., 155 Norris, M., 101 Soloman, G., 108
Somers, M., 47
Kagan, A., x, 6, 8, 12, 13, Oliver, M., 37 St. Michel, G., 72
14, 23, 40, 50, 69, 71, O’Malley, B., 102 Swain, J., 38, 47
158–172 Orchard-Lisle, V., 141 Swinburn, K., 135, 136
Kamei, T., 108 Osborne, F., 154
Katz, R., 101 Tanner, D., 75
Kay, J., 137 Parr, S., 19, 22, 23, 40, 55, Tennant, K., 109
Kearns, K., 23 63, 65, 71, 96, 97, 131, Thomas, C., 47
Keisler, L., 39, 60 158, 164 Thomson, C., 162
Kennedy, J., 20 Patterson, J., 126
Kennedy, S., x, 6, 8, 10, 11, Patterson, K., 141, 142 Vignolo, L., 156
16, 134–157 Penn, C., xi, 4, 8, 9, 10, 11, Viteze, P., 160
Khosa, J., 47 12, 13, 15, 83–100 Volcek, M., 107, 108, 109, 110
Kleinman, A., 22, 41 Pickard, L., 158, 162
Kosinski, M., 163 Poppelreuter, W., 19 Ware, J., 163
Kraemer, I., 101 Porch, B., 58 Weigl, E., 141
Kueneman, K., 108 Porter, G., 135, 136 Weinrich, M., 122
Kumano, H., 108 Potter, R., 101 Weisenburg, T., 20
Kumpula, J., 39, 60 Pound, C., xi, 2, 8, 9, 10, Wendell, S., 35, 43, 51
11, 13, 14, 15, 16, 23, Wepman, J., 20
Lamping, D., 163 32–53, 55, 63, 65, 71, 96, Wertz, T., 85
LaPointe, L., 75, 101, 107 131, 158, 159, 164 West, R., 99
Lazarus, R., 75 Prutting, C., 85 White, E. B., 101
Lefcourt, H., 108 Williams, B., 39
Legg, C., 169 Ramage, A., xi–xii, 5, 8, 13, Williams, S., 101
Lesser, R., 123, 137 14, 16, 118–129 Wing, E., 77
Levine, R., 39, 60 Rao, P., 158 Wohl, C., 162
Levinson, S., 85, 104 Raskin, A., 22 Woolf, C., 23, 55, 96, 131
Lindsay, J., 23, 55, 96, 131 Raymer, A., 119 Wooten, P., 101, 102, 106,
Lomas, J., 158, 162 Register, C., 51 107, 109
Lorig, K., 39 Richman, J., 107 World Health Organization,
Love, G., 77 Riessman, C., 97 58, 161–162
LPAA Project Group, 55, Robey, R., 159 Worrall, L., 121, 127
63, 65, 71, 131, 161–162 Rosenbek, J., 39, 60 Wright, C., 39
Lubinski, R., 70 Ross, R., 121 Wulf, H., 22
Luria, A., 20, 154 Ryff, C., 39, 60, 73, 77
Luterman, D., 75 Ylvisaker, M., 95
Lyon, J., x–xi, 3, 8, 10, 11, Sabatella, M., 131, 133
12, 13, 14, 15, 23, 26, 39, Sacks, H., 102 Zangwill, O., 20
50, 54–82 Sacks, O., 32, 51 Zoghaib, C., 162
Subject index
Adult education, 11, 27 community resources, 11, 27

Advocacy movements, 86 consumers’ views of, 158–171 (see also
Aphasia User involvement)
acute stage of, 25 context-based training, 126–127
and pain, 34 conversation facilitation, 23, 92, 166, 169,
and stroke, 20 170
as a natural part of life, 80 coping (see Coping therapy)
chronic nature of, 10, 28, 70, 74 cost of (see Payment for therapy)
competence, 40 counseling, 75, 86, 95
conduction, 119 discourse structure for, 104
incidence of, 19 drawing, 59, 65, 69
personal impact of (see People with established practices, 1
aphasia) evaluation of (see Evaluation of therapy)
poetry, 46–49 executive routines, 95
potential for recovery, 20, 22, 26, 44, 56 fools rush in, 122
(see also Stages of recovery) functional therapies (see Functional model)
visibility of, 23, 24, 26, 27 group therapy (see Group treatment)
Aphasia assessment, 134 history of (see History of aphasia therapies)
humour, 5, 113–114 holistic, 3, 4, 13
tests, 119–120, 135–138, 142, 143, humour and (see Humour and therapy)
151–152, 153 identity-based, 46–47
Aphasia organisations impairment-focused (see Impairment-
Academy of Aphasia, 21 focused therapy)
American Speech-Language-Hearing improvisation in, 130–133
Association, 21 ingredients of, 90
Aphasia Center of California, 130 issues raised about, 151–156
Aphasia Institute of Toronto Canada, 164 life participation (see Life Participation
British Aphasiology Society, 21 Approach to Aphasia)
Connect, the Communication Disability life system focus, 54–82
Network, 19, 27–28, 33, 47 long term, 15, 26, 62, 96–98, 155–156,
Clinical Aphasiology Conference, 21 170
Dutch Aphasia Association, 21 medical model (see Medical model)
International Aphasia Rehabilitation misplaced and misguided, 14
Congress, 21 moral practices related to (see Moral
Speakability, 151 practices)
Aphasia therapy (rehabilitation), 15–17 narratives (see Narrative)
(see also Aphasia therapy activities) outcomes, 55, 58, 59, 60, 61, 62, 63, 64,
achieving automaticity, 154 134–157, 158–172
cautions related to, 2, 114–115 participation focused, 60, 63, 69, 71–77
combining personal and professional in, 1, (see also Life Participation Approach to
2, 9, 18, 32–53 Aphasia)
collaboration in, 4, 15, 21, 83, 92 patient centred (see Patient centred
communication partners, 61, 65, 166, 169, therapy)
170 phases of, 11, 84, 86–98, 124, 155
176 Subject index
philosophy of, 2, 15–17 Case descriptions of work done with people
Porch’s “fulcrum of the curve”, 58 with aphasia
pragmatic (ecological), 15, 83, 89 Elman’s Mrs W., 132
principles of, 127 Elman’s Mr C., 130–131
priorities in, 11, 139–140 Holland’s work with Roger Ross, 118–129
problem solving and, 3 Lyon’s work with Patty and her family,
reading, 140–142, 143, 148, 151 66–71
relay phrase, 142 Morris, Howard & Kennedy’s work with
resources for, 11, 24–25, 165 (see also Lawrence, 135–156
Payment for) Penn’s work with multilingual client,
role playing, 22 84–85
routines in, 103 Penn’s work with LC, 85–86
self cueing, 123, 126 Penn’s work with Valerie Rosenberg,
self management of, 56, 73–74, 93–94 86–98
Schuellian-based language stimulation, Client power (see Patient centred therapy)
58 Conversation, 91, 131, 136
strategies, 13, 26, 65, 69, 71, 78, 94, 111, humour and, 102
112, 119, 122, 123–124, 126, 134, 148, Conversation analysis, 16, 102
151, 154 (see also Coping therapy) Conversational partners
systems approach, 12 people with aphasia as trainers of, 50
termination of, 74 therapists as, 45
timing of, 61, 73, 134–135, 151, 155–156 training for, 50
training to become teachers, 45 Coping therapy, 3, 13, 17, 40, 64, 74–77,
tools (see Tools of therapy) 93, 120, 121
value of, 134–157 dynamic nature of, 75
volunteers as friends, 60 humour and, 109, 115
word retrieval, 122–126, 141–142, 143, life participation and, 74–77
153–154 outcome of, 76
worthwhile, is it?, 158–172 Cure, assumption of, 1, 9, 10, 25, 26, 32, 35,
Aphasia therapy activities, 46–51 37, 39, 43, 47
Autocue, 122–126, 141, 153–154
coaching couples, 61 Disability movement, 36, 37
crib sheet, 125
developing a GP toolkit, 49 Empowerment, 11
discussion groups, 49, 131–133 Engagement, 1, 5, 44, 46
drill, 16 and flow, 39
how to choose, 57, 65, 69, 71 Ethics, 28–29
humour therapy, suggested activities, ethical practices, 8, 28
111–113 ethical responsibility, 1, 2
multi-modal therapy approach, 141–142 Evaluation of therapy, 12, 14, 55
Promoting Aphasics’ Communication consumer/user consultation and evaluation
Effectiveness, 59, 104 tools, 158, 162–163
poetry workshop, 46–47 discrepancy beween client judgment and
Supported Conversation of Adults with test scores, 148, 153, 155–156
Aphasia (SCA), 166, 169, 170 efficacy of aphasia programmes, 20
use of one-liners, 91–93 evidence-based practice, 6
Authentic inclusion, 7 frameworks used for, 159–162
Authentic listening, 40 interview, 148–151, 158–172
is it worthwhile, 158–172
Barriers, 2, 15, 17, 25, 56 long term outcomes, 26
and access, 37, 44, 48, 166 test score comparisons, 125, 142–148
attitude barriers, 36, 163 rote learning problem, 131
environmental barriers, 37 ten-point scale of life satisfaction, 77
information barriers, 37, 164 what counts as success, 134–157, 169
language barrier, 164, 166
life barriers, 63, 66, 67, 72 Functional model of therapy, 21
participation barriers, 163–169 functional communication, 22, 160
resource barriers, 2, 10, 24
system barriers, 2, 10 Group treatment, 6, 16, 23, 40, 41, 51, 75,
time barriers, 2, 10, 36, 44 121, 130–133, 135, 154–155
Subject index 177
Health care system, 2, 24–25, 56, 66 quest narratives, 41, 42
History of aphasia therapies, 2, 19–31 restitution (determination) narratives, 36,
Humour, 4, 13, 99, 101–117 41, 42, 43–44, 47, 96
assessment of, 5, 113–114 simultaneous narratives, 42–43
functions of, 105, 106–110 stories of expertise, 40
power and, 104–105
premeditated humour, 106–107 Patient centred practice, 5, 6, 13, 14, 60, 61,
therapy and, 16, 45, 101–117 62, 63, 66–71, 86–98, 114, 121, 128
values and, 105–106 listening to clients, 46
“participating in choice”, 121
Identity person/therapist relationship in, 23,
of therapists, 8 104–105
of people with disabilities, 33, 38, 40 person/centred evaluation, 160–161
Impairment focused therapy, 2, 11, 12, 13, Payment for therapy, 70
14, 25, 26, 32, 35, 42, 43, 47, 55, 58, cost effective therapy, 10, 15, 55–56, 74,
65, 70, 74, 75, 131, 132, 140–142, 152, 75
154–155 managed care, 24
Insider’s perspective of the therapist Prospective Payment System, 25
concerns about what counts as success, third party payers, 12, 24, 56
134–157 People with aphasia
looking back on career, 21, 54–82, acceptance of disability, 51
83–100 confidence of, 11, 168
view from someone with a disability, depression in, 12, 22, 91, 107
32–53 evaluation of therapy, 148–151, 158–172
expertise of, 39, 158–172
Life Participation Approach to Aphasia identity of, 12, 15, 22, 23, 26, 33, 37, 34,
(LPAA), 23, 63, 71–77, 131, 162 37–40, 44, 96, 109
core valuates of LPAA, 161 independence, 168
life participation and coping, 74–77 intimacy with, 63, 66–68, 77
life participation issues, 97 personal tragedy, 38, 47
life participation model, 72, 80, 170 pity for, 28
life participation and restoration of power and status relations, 95
communicative function, 77–78 serving as teachers, 30
Living with aphasia, 26, 42, 128, 169 social isolation, 60
being reborn, 47 Valerie Rosenberg’s diary excerpts,
control, 37–40, 43, 45, 50, 148, 168 88–96
community inclusion, 27 Power relations in therapy, 2, 3, 7, 13, 37,
getting out more, 168 40, 41, 50, 104–105, 114
having hope, 168 Professionalism, 5
living with difference, 33, 44, 51, 128, humour and, 102
168 professional as patient, 32–53
lifestyle changes, 38 professional boundaries, 33, 102, 115
therapy that impacts life, 54, 63 professional roles, 25, 45, 71, 97
professional training, 28, 98–99
Medical model, 17, 26, 32, 39, 58, 71, speech therapy/pathology skills, 45
159–160, 161 terminal professionalism, 5, 102
and neurology, 32 Psycholinguistic model, 160, 161
Moral practices and perspectives, 1, 2, 15, Psychosocial model, 22, 23, 26, 28, 107
28–29 psychosocial transition model, 26
moral imperatives for aphasia therapy, Public education about aphasia, 27
19–29
Quality of life, 26, 28, 109
Narrative
affirmation of self and disability, 47 Reflective practice, 3, 17, 17–18
chaos narratives, 41, 42, 47 Reflective thinking, 1, 2, 8, 17, 33, 90, 170
competing narratives, 42–43 negotiated reflection, 15
cultural narratives, 86 use of narratives 39, 45
disability narratives, 37, 41–44 Reflexive thinking, 1, 18
illness narratives, 41, 50 Rehabilitation medicine, 21
narrative-based practice, 41, 86–98 Restitution narratives, 15
178 Subject index
Social model Therapists’ ingenuity, 5
disability and, 37, 38 Tools of therapy, 3, 15
humour and, 102 functional communication therapy
practice within, 2, 17, 23, 26 planner, 127
Social policy re aphasia, 27 Transcendence and therapy, 37, 39, 98
Stages of recovery
acute stage, 26, 155 User involvement, 6, 7, 158–172
phases in recovery, 90–98, 155–156
Support for those with aphasia, 10, 24, 38 Western medicine, 19 (see also Medical
communication aides, 27 model)
group members, 154 World Health Organization
life enhancers, 76 International Classification of
pie diagram for prioritizing, 167 Functioning, 161, 162

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Challenging

ISBN 0-203-46270-X Master e-book ISBN

ISBN 0-203-67656-4 (Adobe eReader Format)

1 Challenging aphasia therapies 8

2 Aphasia therapies: Historical perspectives and

3 Dare to be different: The person and the practice 32

4 Evolving treatment methods for coping with aphasia

5 Context, culture, and conversation 83

6 Just kidding! Humour and therapy for aphasia 101

7 Learning from Roger Ross: A clinical journey 118

8 Group treatment and jazz: Some lessons learned 130

9 The value of therapy: What counts? 134

Author index 173

Sally Byng is Chief Executive and Director of Research for Connect—the

This book is a challenge to established practices in aphasia therapy. Because

1 include considerations of moral and ethical responsibility in their practices;

Chapter 1. Challenging aphasia therapies

1 Combining the personal and the professional

In Chapter 1 we talk about the different challenges associated with these

Chapter 2. Aphasia therapies: Historical perspectives and moral imperatives

Chapter 3. Dare to be different: The person and the practice

Chapter 5. Context, culture, and conversation

Chapter 6. Just kidding! Humour and therapy for aphasia

Chapter 7. Learning from Roger Ross: A clinical journey

Chapter 8. Group treatment and jazz: Some lessons learned

Chapter 9. The value of therapy: What counts?

Chapter 10. Consumers’ views of what makes therapy worthwhile

This is a book of challenging musings by speech-language therapists/

COMBINING THE PERSONAL WITH THE PROFESSIONAL

CHALLENGING THE TACIT ASSUMPTION OF CURE

There is another area of reﬂection running through the chapters in this

ADDRESSING TIME, RESOURCE, AND SYSTEM

PROVIDING ENOUGH TIME TO ATTAIN

UNDERSTANDING THAT APHASIA IS MORE THAN

Aphasia is a life-changing event. All of the chapters in this book attest to

DEALING WITH POWER RELATIONS DURING THERAPY

RECOGNIZING MISPLACED THERAPIES AND

MAKING ROOM FOR REFLECTIVE PRACTICES

It is both an honour and a pleasure to contribute the keynote paper to this

• limited access to rehabilitation services stemming from economic

Many of the issues we face stem from aphasiology’s persistence in adher-

It is one thing to give care and protection out of a sense of pity, or

I am grateful to Jennings (1993, 2001) who reminds us of our universal

Preparation of this chapter was supported in part by a grant to the author

Backus, O. (1945). Rehabilitation of aphasic war veterans. Journal of Speech Disorders,

Neurology is largely a veterinary business—it deals almost exclusively with

In A Leg to Stand On (1991) Oliver Sacks gives a masterly account of his

PATHWAYS THROUGH THERAPY

My early career as a patient was dominated by pain, confusion, and a deter-

UNDERSTANDING THE NATURE OF RECOVERY

Understanding the nature of a complex impairment took many years of

NEW APPROACHES TO DISABILITY

It was therefore a rude awakening to me as a therapist to discover writings

DEVELOPING NEW IDENTITIES: CONTROL,

THE DYNAMICS OF THERAPY

1 Frequently and explicitly acknowledge the person’s expertise in their

NARRATIVES OF ILLNESS AND DISABILITY

COMPETING NARRATIVES AND SIMULTANEOUS

Reﬂecting on my own illness navigation, I can remember vividly the chaos