Ableism and anti-disability bias continue to go underrecognized as a source of harm in patient ca... more Ableism and anti-disability bias continue to go underrecognized as a source of harm in patient care. Although certain jargon is required for the practice of medicine, the persistent use of some words and phrases, even as technical language, reveals anti-disability bias. Unlike medical understandings of the term "disability," disability studies scholars and advocates use the term to refer to the consequences of a society failing to meet the needs of a person with an impairment, resulting in inaccessibility, stigma, and discrimination. Although still used in most medical literature, person first language is not always appropriate outside of that context as many disabled people prefer identity first language. Even the busiest clinician can be an effective anti-ableist advocate.
This article puts critical disability studies and global health into conversation around the phen... more This article puts critical disability studies and global health into conversation around the phenomenon of scarf injury in Bangladesh. Scarf injury occurs when a woman wearing a long, traditional scarf called an orna rides in a recently introduced autorickshaw with a design flaw that allows the orna to become entangled in the vehicle's driveshaft. Caught in the engine, the orna pulls the woman's neck into hyperextension, causing a debilitating high cervical spinal cord injury and quadriplegia. The circumstances of the scarf injury reveal the need for more critical cultural analysis than the fields of global health and rehabilitation typically offer. First, the fatal design flaw of the vehicle reflects different norms of gender and dress in China, where the vehicle is manufactured, versus Bangladesh, where the vehicle is purchased at a low price and assembled on-site-a situation that calls transnational capitalist modes of production and exchange into question. Second, the experiences of women with scarf injuries entail many challenges beyond the injury itself: the transition to life with disability following the rehabilitation period is made more difficult by negative perceptions of disability, lack of resources and accessible infrastructure, and cultural norms of gender and class in Bangladesh. Our cross-disciplinary conversation about women with scarf injuries, involving critical disability studies, global health and rehabilitation experts, exposes the shortcomings of each of these fields but also illustrates the urgent need for deeper and more purposeful collaborations. We, therefore, argue that the developing subfield of global health humanities should include purposeful integration of a humanities-based critical disability studies methodology.
Journal of Pediatric Rehabilitation Medicine, 2020
The COVID-19 era exposes what was already a crisis in the medical profession: structural racism, ... more The COVID-19 era exposes what was already a crisis in the medical profession: structural racism, ageism, sexism, classism, and ableism resulting in healthcare disparities for Persons with Disabilities (PWD). Early research highlights these disparities, but we do not yet know the full impact of this pandemic on PWD. Over the last 20 years, many medical schools have attempted to develop disability competency trainings, but discrimination and inequities remain, resulting in a pervasive distrust of medicine by the disability community at large. In this commentary, we suggest that disability competency is insufficient because the healthcare disparities experienced by PWD are not simply a matter of individual biases, but structural and systemic factors requiring a culture shift in the healthcare professions. Recognizing that disability is a form of diversity that is experienced alongside other systemic disadvantages like social class, race, age, sex, gender identity, and geographic location, we explore the transformative potential of disability conscious medical education, training, and practice that draws on insights from intersectional disability justice activism. Disability conscious medicine is a novel approach, which improves upon competency programs by utilizing disability studies and the principles of disability justice to guide us in the critique of norms, traditions, and institutions to more fully promote the respect, beneficence, and justice that patients deserve.
Keywords: Disability, disability justice, medical training, diversity, COVID-19
The Year's Work in Critical and Cultural Theory (Oxford University Press), 2020
This chapter reviews major recent publications focused on madness and neurodiversity. It is organ... more This chapter reviews major recent publications focused on madness and neurodiversity. It is organized into four sections that explore the boundaries of mad studies and disability studies. The first section, ‘Is Mad Studies Disability Studies?’, provides a brief introduction to mad studies and asks whether it should be considered a branch of disability studies or a separate field. The second section, ‘Voices’, reviews a special issue of the Journal of Ethics in Mental Health edited by Jijian Voronka and Lucy Costa to overview how various mad studies scholars are contesting and expanding the boundaries of the field. Who is the ‘us’ of ‘nothing about us without us’? Whose voices are included, and is inclusion enough? The third section, ‘Literatures’, reviews the anthology Literatures of Madness: Disability Studies and Mental Health, edited by Elizabeth J. Donaldson, and the monograph Black Madness :: Mad Blackness by Theri Alyce Pickens, calling for deeper attention to racial difference in mad studies and suggesting that real inclusion should be transformational. The fourth section, ‘Rhetorics’, goes outside the boundaries of mad and disability studies to review Jordynn Jack’s Raveling the Brain: Toward a Transdisciplinary Neurorhetoric. The chapter calls for future scholarship that is not only transdisciplinary but also attentive to the enmeshment of mind and body, madness and disability. I argue that, while the two fields should not be collapsed, disability studies should dialogue with mad studies wherever possible, and vice versa.
The Year’s Work in Critical and Cultural Theory (Oxford University Press), 2019
This chapter reviews three books published in 2018 centering on disability and resistance. It is ... more This chapter reviews three books published in 2018 centering on disability and resistance. It is organized into five sections. The first, ‘Resistance, Disability, and Democracy’, summarizes debates about the political obligations of disability studies, and outlines how disability justice is replacing the former emphasis on rights. The second section, ‘Academic Perspectives’, reviews the provocative collection Manifestos for the Future of Critical Disability Studies, volume 1, identifying areas of contention and raising questions about the field’s current direction. The third section, ‘Activist Perspectives’, reviews Alice Wong’s collection Resistance and Hope: Essays by Disabled People. The fourth section, ‘Beyond Identity’, reviews Robert McRuer’s Crip Times: Disability, Globalization, and Resistance. The concluding section, ‘An Abbreviated Manifesto’, asserts the vital role of disability justice in establishing alternatives to neoliberalism, resisting tyranny, and achieving democracy.
Disability Experiences: Memoirs, Autobiographies, and Other Personal Narratives, 2019
This article provides guidelines for understanding Irish socialist playwright Sean O'Casey as a d... more This article provides guidelines for understanding Irish socialist playwright Sean O'Casey as a disabled author, through analysis of the first volume of his autobiography, _I Knock at the Door_ (1939). The narrative describes the author’s experience as a poor child with a painful disease of the eyes, likely trachoma. Like O’Casey’s other works, the book strongly criticizes the inequalities brought about by capitalism. It also describes how ableist medical, religious, and educational authorities further contributed to his sense of alienation.
The article is a chapter in _Disability Experiences_, edited by G. Thomas Couser and Susannah B. Mintz. The collection provides overviews, historical and cultural contexts, and themes of hundreds of first-person disability memoirs, autobiographies, and other personal narratives.
This article analyzes the rhetoric of degeneration theory, an anxiety that the human race was wea... more This article analyzes the rhetoric of degeneration theory, an anxiety that the human race was weakening and that art was in decline, in Joyce’s early reception. The prevalence of disability imagery, and distortions of ideals of embodiment and cognition, in modern art drove degeneration theorists like Max Nordau (and later, Hitler) to panic that psychiatric disability was on the rise. Joyce’s early critics denounced his work as the product of mental and moral impairment. But it was Joyce’s use of disability as an aesthetic principle that made his work striking and influential. In the “Shem the Penman” chapter of Finnegans Wake (1939), Joyce transformed words and images from his reception to present a defiant degenerate artist. Shem takes artistic autonomy to a comic extreme: making writing materials out of his own body, he affirms the generative potential of deviant bodies and divergent language.
By reconstructing the history through which Ireland and the Irish were degraded via representatio... more By reconstructing the history through which Ireland and the Irish were degraded via representations incorporating disability, this essay reads the early nationalist response to Cathleen ni Houlihan as an intense identification with a narrative of cure or rehabilitation. The fraught connotations of disability and nationality in turn-of-the-century Ireland gave Yeats and Gregory’s play dramatic power and tragic significance. The Old Woman’s transformation from debility to capacity offers a revolutionary symbol of rejuvenation and rehabilitation. But the play itself complicates the narrative of cure even as it presents it: Cathleen’s rehabilitation is achieved through Michael’s willingness to face disablement or death on her behalf. The symbol of a fit and able Ireland is sustained through the violence of rebellion and its concomitant war injuries, traumas, and scars. In reading the tension between various signifiers of disability in the text—symbolic and literal, physical and mental—this essay argues that Cathleen ni Houlihan’s complex engagement with stereotypes of Irish disability allows it to function as a stimulus for national feeling while remaining, as a literary object, ambivalent.
(Paper available via Project Muse in The Journal of Literary and Cultural Disability Studies, 9.1... more (Paper available via Project Muse in The Journal of Literary and Cultural Disability Studies, 9.1 (March 2015)). The expectation of genius in autistic people is becoming commonplace, largely due to the prevalence of stories of overcoming and achievement in popular representations of autism as well as the market for autistic personal narratives. Genius and savant skills are more readily attributed to neurological abnormality than to genuine creativity and work. Though the artistic work of people with autism has the potential to challenge existing clinical beliefs about imaginative deficits in people with autism, it is often described in pathological terms. In this article, I read personal narratives of autism against theories of deficit to deconstruct the composite stereotype of the autistic genius without imagination. I call upon disability studies scholars to revise the ableist implications of the term “genius” as it is presently applied, and to reclaim definitions of the term that service diversity and empowerment.
in Flann O'Brien: Contesting Legacies. Eds. Paul Fagan, Ruben Borg, and Werner Huber. Cork Univer... more in Flann O'Brien: Contesting Legacies. Eds. Paul Fagan, Ruben Borg, and Werner Huber. Cork University Press, 2014.
Duke's pioneers are the people and organizations who push the University forward, relentlessly re... more Duke's pioneers are the people and organizations who push the University forward, relentlessly reimagining every aspect of our community with boundless energy and passion. They question the status quo and refuse to accept anything that is unjust or unsatisfactory.
Blog post by Kate Capitano covering "Disability Studies: ReWriting Democracy" at the University o... more Blog post by Kate Capitano covering "Disability Studies: ReWriting Democracy" at the University of North Carolina's Grand Rounds lecture series, November 2019 at the HHiVE lab (Health and Humanities: an Interdisciplinary Venue for Exploration).
Duke Chronicle article by Defne Yorgancioglu describing efforts by faculty and students to increa... more Duke Chronicle article by Defne Yorgancioglu describing efforts by faculty and students to increase the presence of disability studies at Duke University through curriculum building and student activism.
“Working with the Library” is an occasional series of stories highlighting collaborations between... more “Working with the Library” is an occasional series of stories highlighting collaborations between librarians and the people around campus whose teaching and research we support.
Dr. Marion Quirici is a Lecturing Fellow in the Thompson Writing Program and a faculty advisor for the Duke Disability Alliance. This semester she is teaching Writing 101: Neurodiversity, Narrative, Activism. Her students are working on projects that fight stigma by educating the public about the social contexts of mental and psychiatric disabilities. Kim Duckett, Head of Research and Instructional Services, has been Marion’s course librarian for three semesters.. She recently asked Marion a few questions about how the library has supported her teaching and research in the area of disability studies.
Ableism and anti-disability bias continue to go underrecognized as a source of harm in patient ca... more Ableism and anti-disability bias continue to go underrecognized as a source of harm in patient care. Although certain jargon is required for the practice of medicine, the persistent use of some words and phrases, even as technical language, reveals anti-disability bias. Unlike medical understandings of the term "disability," disability studies scholars and advocates use the term to refer to the consequences of a society failing to meet the needs of a person with an impairment, resulting in inaccessibility, stigma, and discrimination. Although still used in most medical literature, person first language is not always appropriate outside of that context as many disabled people prefer identity first language. Even the busiest clinician can be an effective anti-ableist advocate.
This article puts critical disability studies and global health into conversation around the phen... more This article puts critical disability studies and global health into conversation around the phenomenon of scarf injury in Bangladesh. Scarf injury occurs when a woman wearing a long, traditional scarf called an orna rides in a recently introduced autorickshaw with a design flaw that allows the orna to become entangled in the vehicle's driveshaft. Caught in the engine, the orna pulls the woman's neck into hyperextension, causing a debilitating high cervical spinal cord injury and quadriplegia. The circumstances of the scarf injury reveal the need for more critical cultural analysis than the fields of global health and rehabilitation typically offer. First, the fatal design flaw of the vehicle reflects different norms of gender and dress in China, where the vehicle is manufactured, versus Bangladesh, where the vehicle is purchased at a low price and assembled on-site-a situation that calls transnational capitalist modes of production and exchange into question. Second, the experiences of women with scarf injuries entail many challenges beyond the injury itself: the transition to life with disability following the rehabilitation period is made more difficult by negative perceptions of disability, lack of resources and accessible infrastructure, and cultural norms of gender and class in Bangladesh. Our cross-disciplinary conversation about women with scarf injuries, involving critical disability studies, global health and rehabilitation experts, exposes the shortcomings of each of these fields but also illustrates the urgent need for deeper and more purposeful collaborations. We, therefore, argue that the developing subfield of global health humanities should include purposeful integration of a humanities-based critical disability studies methodology.
Journal of Pediatric Rehabilitation Medicine, 2020
The COVID-19 era exposes what was already a crisis in the medical profession: structural racism, ... more The COVID-19 era exposes what was already a crisis in the medical profession: structural racism, ageism, sexism, classism, and ableism resulting in healthcare disparities for Persons with Disabilities (PWD). Early research highlights these disparities, but we do not yet know the full impact of this pandemic on PWD. Over the last 20 years, many medical schools have attempted to develop disability competency trainings, but discrimination and inequities remain, resulting in a pervasive distrust of medicine by the disability community at large. In this commentary, we suggest that disability competency is insufficient because the healthcare disparities experienced by PWD are not simply a matter of individual biases, but structural and systemic factors requiring a culture shift in the healthcare professions. Recognizing that disability is a form of diversity that is experienced alongside other systemic disadvantages like social class, race, age, sex, gender identity, and geographic location, we explore the transformative potential of disability conscious medical education, training, and practice that draws on insights from intersectional disability justice activism. Disability conscious medicine is a novel approach, which improves upon competency programs by utilizing disability studies and the principles of disability justice to guide us in the critique of norms, traditions, and institutions to more fully promote the respect, beneficence, and justice that patients deserve.
Keywords: Disability, disability justice, medical training, diversity, COVID-19
The Year's Work in Critical and Cultural Theory (Oxford University Press), 2020
This chapter reviews major recent publications focused on madness and neurodiversity. It is organ... more This chapter reviews major recent publications focused on madness and neurodiversity. It is organized into four sections that explore the boundaries of mad studies and disability studies. The first section, ‘Is Mad Studies Disability Studies?’, provides a brief introduction to mad studies and asks whether it should be considered a branch of disability studies or a separate field. The second section, ‘Voices’, reviews a special issue of the Journal of Ethics in Mental Health edited by Jijian Voronka and Lucy Costa to overview how various mad studies scholars are contesting and expanding the boundaries of the field. Who is the ‘us’ of ‘nothing about us without us’? Whose voices are included, and is inclusion enough? The third section, ‘Literatures’, reviews the anthology Literatures of Madness: Disability Studies and Mental Health, edited by Elizabeth J. Donaldson, and the monograph Black Madness :: Mad Blackness by Theri Alyce Pickens, calling for deeper attention to racial difference in mad studies and suggesting that real inclusion should be transformational. The fourth section, ‘Rhetorics’, goes outside the boundaries of mad and disability studies to review Jordynn Jack’s Raveling the Brain: Toward a Transdisciplinary Neurorhetoric. The chapter calls for future scholarship that is not only transdisciplinary but also attentive to the enmeshment of mind and body, madness and disability. I argue that, while the two fields should not be collapsed, disability studies should dialogue with mad studies wherever possible, and vice versa.
The Year’s Work in Critical and Cultural Theory (Oxford University Press), 2019
This chapter reviews three books published in 2018 centering on disability and resistance. It is ... more This chapter reviews three books published in 2018 centering on disability and resistance. It is organized into five sections. The first, ‘Resistance, Disability, and Democracy’, summarizes debates about the political obligations of disability studies, and outlines how disability justice is replacing the former emphasis on rights. The second section, ‘Academic Perspectives’, reviews the provocative collection Manifestos for the Future of Critical Disability Studies, volume 1, identifying areas of contention and raising questions about the field’s current direction. The third section, ‘Activist Perspectives’, reviews Alice Wong’s collection Resistance and Hope: Essays by Disabled People. The fourth section, ‘Beyond Identity’, reviews Robert McRuer’s Crip Times: Disability, Globalization, and Resistance. The concluding section, ‘An Abbreviated Manifesto’, asserts the vital role of disability justice in establishing alternatives to neoliberalism, resisting tyranny, and achieving democracy.
Disability Experiences: Memoirs, Autobiographies, and Other Personal Narratives, 2019
This article provides guidelines for understanding Irish socialist playwright Sean O'Casey as a d... more This article provides guidelines for understanding Irish socialist playwright Sean O'Casey as a disabled author, through analysis of the first volume of his autobiography, _I Knock at the Door_ (1939). The narrative describes the author’s experience as a poor child with a painful disease of the eyes, likely trachoma. Like O’Casey’s other works, the book strongly criticizes the inequalities brought about by capitalism. It also describes how ableist medical, religious, and educational authorities further contributed to his sense of alienation.
The article is a chapter in _Disability Experiences_, edited by G. Thomas Couser and Susannah B. Mintz. The collection provides overviews, historical and cultural contexts, and themes of hundreds of first-person disability memoirs, autobiographies, and other personal narratives.
This article analyzes the rhetoric of degeneration theory, an anxiety that the human race was wea... more This article analyzes the rhetoric of degeneration theory, an anxiety that the human race was weakening and that art was in decline, in Joyce’s early reception. The prevalence of disability imagery, and distortions of ideals of embodiment and cognition, in modern art drove degeneration theorists like Max Nordau (and later, Hitler) to panic that psychiatric disability was on the rise. Joyce’s early critics denounced his work as the product of mental and moral impairment. But it was Joyce’s use of disability as an aesthetic principle that made his work striking and influential. In the “Shem the Penman” chapter of Finnegans Wake (1939), Joyce transformed words and images from his reception to present a defiant degenerate artist. Shem takes artistic autonomy to a comic extreme: making writing materials out of his own body, he affirms the generative potential of deviant bodies and divergent language.
By reconstructing the history through which Ireland and the Irish were degraded via representatio... more By reconstructing the history through which Ireland and the Irish were degraded via representations incorporating disability, this essay reads the early nationalist response to Cathleen ni Houlihan as an intense identification with a narrative of cure or rehabilitation. The fraught connotations of disability and nationality in turn-of-the-century Ireland gave Yeats and Gregory’s play dramatic power and tragic significance. The Old Woman’s transformation from debility to capacity offers a revolutionary symbol of rejuvenation and rehabilitation. But the play itself complicates the narrative of cure even as it presents it: Cathleen’s rehabilitation is achieved through Michael’s willingness to face disablement or death on her behalf. The symbol of a fit and able Ireland is sustained through the violence of rebellion and its concomitant war injuries, traumas, and scars. In reading the tension between various signifiers of disability in the text—symbolic and literal, physical and mental—this essay argues that Cathleen ni Houlihan’s complex engagement with stereotypes of Irish disability allows it to function as a stimulus for national feeling while remaining, as a literary object, ambivalent.
(Paper available via Project Muse in The Journal of Literary and Cultural Disability Studies, 9.1... more (Paper available via Project Muse in The Journal of Literary and Cultural Disability Studies, 9.1 (March 2015)). The expectation of genius in autistic people is becoming commonplace, largely due to the prevalence of stories of overcoming and achievement in popular representations of autism as well as the market for autistic personal narratives. Genius and savant skills are more readily attributed to neurological abnormality than to genuine creativity and work. Though the artistic work of people with autism has the potential to challenge existing clinical beliefs about imaginative deficits in people with autism, it is often described in pathological terms. In this article, I read personal narratives of autism against theories of deficit to deconstruct the composite stereotype of the autistic genius without imagination. I call upon disability studies scholars to revise the ableist implications of the term “genius” as it is presently applied, and to reclaim definitions of the term that service diversity and empowerment.
in Flann O'Brien: Contesting Legacies. Eds. Paul Fagan, Ruben Borg, and Werner Huber. Cork Univer... more in Flann O'Brien: Contesting Legacies. Eds. Paul Fagan, Ruben Borg, and Werner Huber. Cork University Press, 2014.
Duke's pioneers are the people and organizations who push the University forward, relentlessly re... more Duke's pioneers are the people and organizations who push the University forward, relentlessly reimagining every aspect of our community with boundless energy and passion. They question the status quo and refuse to accept anything that is unjust or unsatisfactory.
Blog post by Kate Capitano covering "Disability Studies: ReWriting Democracy" at the University o... more Blog post by Kate Capitano covering "Disability Studies: ReWriting Democracy" at the University of North Carolina's Grand Rounds lecture series, November 2019 at the HHiVE lab (Health and Humanities: an Interdisciplinary Venue for Exploration).
Duke Chronicle article by Defne Yorgancioglu describing efforts by faculty and students to increa... more Duke Chronicle article by Defne Yorgancioglu describing efforts by faculty and students to increase the presence of disability studies at Duke University through curriculum building and student activism.
“Working with the Library” is an occasional series of stories highlighting collaborations between... more “Working with the Library” is an occasional series of stories highlighting collaborations between librarians and the people around campus whose teaching and research we support.
Dr. Marion Quirici is a Lecturing Fellow in the Thompson Writing Program and a faculty advisor for the Duke Disability Alliance. This semester she is teaching Writing 101: Neurodiversity, Narrative, Activism. Her students are working on projects that fight stigma by educating the public about the social contexts of mental and psychiatric disabilities. Kim Duckett, Head of Research and Instructional Services, has been Marion’s course librarian for three semesters.. She recently asked Marion a few questions about how the library has supported her teaching and research in the area of disability studies.
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Keywords: Disability, disability justice, medical training, diversity, COVID-19
The article is a chapter in _Disability Experiences_, edited by G. Thomas Couser and Susannah B. Mintz. The collection provides overviews, historical and cultural contexts, and themes of hundreds of first-person disability memoirs, autobiographies, and other personal narratives.
Dr. Marion Quirici is a Lecturing Fellow in the Thompson Writing Program and a faculty advisor for the Duke Disability Alliance. This semester she is teaching Writing 101: Neurodiversity, Narrative, Activism. Her students are working on projects that fight stigma by educating the public about the social contexts of mental and psychiatric disabilities. Kim Duckett, Head of Research and Instructional Services, has been Marion’s course librarian for three semesters.. She recently asked Marion a few questions about how the library has supported her teaching and research in the area of disability studies.
Keywords: Disability, disability justice, medical training, diversity, COVID-19
The article is a chapter in _Disability Experiences_, edited by G. Thomas Couser and Susannah B. Mintz. The collection provides overviews, historical and cultural contexts, and themes of hundreds of first-person disability memoirs, autobiographies, and other personal narratives.
Dr. Marion Quirici is a Lecturing Fellow in the Thompson Writing Program and a faculty advisor for the Duke Disability Alliance. This semester she is teaching Writing 101: Neurodiversity, Narrative, Activism. Her students are working on projects that fight stigma by educating the public about the social contexts of mental and psychiatric disabilities. Kim Duckett, Head of Research and Instructional Services, has been Marion’s course librarian for three semesters.. She recently asked Marion a few questions about how the library has supported her teaching and research in the area of disability studies.