37

Coping with Stigma: Lifelong Adaptation

of Deaf People
Gaylene Becker

Usually, when people think of an illness that carries n Why do some deaf couples hope that their child­
stigma, they think of the classic case of leprosy, as we saw ren will be deaf, too?
in Chapter 22. What comes to mind are images of dirty n Is the creation of social stigma simply part of
bandages, lost fingers or toes, open sores, and the social human nature? Or does one’s culture define
ostracism of being unclean. Stigma means that people fear what is normal?
the individual who is sick. The suffering from stigma can
n To what extent does the term adapt used in this
be worse than the physical pain. In fact, the irony that
selection have a meaning similar to the concept
Hansen’s disease (leprosy) is not very contagious must
of adaptation used in Chapters 2–7 of this book?
add to the suffering of stigma. Disfigurement from an ill-
ness is worse because people assume that the individual n What are the advantages and disadvantages of
inside is also disfigured. Stigma is the grotesque side of the hearing-impaired people attending separate
“beauty myth” (Wolf 1992). schools or being mainstreamed? Is participation
Medical anthropologists have studied the illness expe- in a separate community a normal human need
rience of people with chronic health problems, including or an adaptation to ostracism?
congenital conditions such as the extremely short stature
of little people or dwarfs. (See the article by Joan Ablon in
Chapter 36.) People with such conditions have to learn to
adapt to their life situation physically, socially, and psycho- Context: Gaylene Becker (1943–2007) was a much-
logically. But is this not simply human variation? admired medical anthropologist at the University
This selection concerns the stigma of deafness and the of California, San Francisco (UCSF), who brought
lifelong adaptations of deaf people, a group with no obvious a strong sense of social justice to her research. Dur-
physical disability. However, their disability affects their ing her career, she explored issues ranging from
social interactions. In this article, Gaylene Becker refers to infertility to aging, as well as the intersections
deafness as an “invisible disability.” Deaf people have to between them. This article represents her ear-
interact with the hearing world, but the interaction is some- lier investigations into the relationships between
times difficult or emotionally painful. Often, hearing people social stigma, chronic illness, and physical dis-
condescend to deaf people. Deafness is not a disease; the deaf abilities, under the guidance of George Foster and
form a community with special needs. Students interested Joan Ablon at the UCSF-Berkeley joint medical
in this topic might read Inside Deaf Culture by Padden anthropology program. Becker was one of the first
and Humphries (2006). The Americans with Disabilities people to receive a doctoral degree with a specific
Act has guaranteed hearing-impaired people access to pub- focus on medical anthropology. This classic arti-
lic facilities and events, but the issues of stigma still remain. cle highlights some unique themes surrounding
As you read this selection, consider these questions: deafness: both the stigma of an invisible disabil-
ity and the ways in which deaf people segregate
n Why might an “invisible disability” involve a themselves to avoid negative interactions with the
different set of problems than a visible one? hearing world.

Understanding and Applying Medical Anthropology: Biosocial and Cultural Approaches (3rd ed.) by Peter J. Brown and Svea Closser, 372–76 © 2016
Taylor & Francis. All rights reserved. Chapter 37 original article source: G. Becker. 1981. Coping with Deafness: Lifelong Adaptation of Deaf
People. Social Science & Medicine 15: 21-24,

372
 37 Coping with Stigma: Lifelong Adaptation of Deaf People 373

Mrs. Simpson was sitting in her small, cluttered

1
it is a continuous reminder to deaf people that they
vary from the norm.
apartment in senior citizen housing, relating the story
of her life. Suddenly, she became agitated, jumped up,
and enacted a drama from her childhood.
I was playing in the school yard with some other THE ROOT OF STIGMA
girls and a boy came along. He pointed at me. “Deafy,”
he screamed. “Deaf and dumb,” and he threw some- The experience of stigma is inextricably intertwined
thing like acid in my face. It was a terrible day in my with the condition of deafness for most deaf peo-
life. Why should he hate me just because I am deaf? ple and arises in the first few years of life. The great
Stigma is a universal phenomenon. In every soci- majority of aged deaf people had hearing parents
ety certain conditions are stigmatized, whether they with whom they were never able to satisfactorily com-
are based on physical “blemishes” or on behavior that municate. These individuals did not begin to acquire
deviates from the norm.2 Societies develop negative language until they went to school at the age of five
attitudes in response to the stigmatizing condition. or six. The inability of parents to teach their children
Individuals with such a blemish or behavior quickly language and to socialize them created an emotional
become aware of the way others view them. The stig- crisis that was exacerbated by the controversy over
matized individual must struggle with these negative educational methods for deaf children. Parents faced
attitudes and with the devalued status that accom- a dilemma. They had to make a choice: whether to
panies them and develop strategies for handling the have their children learn the “oral” method that
stigma. The individual who fails to do this cannot taught speech and lipreading or whether to send chil-
function adequately. In American society, failure to dren away to a school where they would learn sign
learn coping skills often results in institutionalization language. One hearing parent said of this decision,
or, at best, existence on the fringes of society. When “It was agonizing. My in-laws were against me. They
sufficient numbers of stigmatized people form a sub- said I just wanted to get rid of the deaf one by sending
society, they build coping strategies for dealing with him off to a state school. I decided it was in his best
stigma into their subculture. interest, but it wasn’t easy to let him go.”
This article describes the ways in which older deaf American Sign Language was, and is, forbidden
people perceive and deal with stigma. The author in oral schools, and its use brought punishment to the
studied 200 people in the San Francisco Bay Area who individual. In those state schools where it was used,
were born deaf or became deaf in the first few years the stigma surrounding it created a common bond
of life. They were all over the age of 60 at the time of among deaf children. In old age people still discuss
the study and communicated in American Sign Lan- their first awareness of being stigmatized. One woman
guage. Fieldwork was conducted in sign language, said, “My father didn’t want to send his child to an
utilizing traditional anthropological field techniques ‘asylum’—it would bring shame on the family” while
of participant observation and in-depth interview- another respondent said, “My mother dragged me out
ing. The 200 people formed a natural group, and from of that school—she said it was not nice to sign.”
this group 60 were selected for in-depth interviewing. In contrast, deaf individuals in the study group
Participant observation activities took place wherever who had deaf parents did not experience these con-
aged deaf people congregated—in senior citizen cent- flicts. Eight percent of the deaf population have deaf
ers, at deaf clubs, at funerals, and in people’s homes. parents,6 from whom they learn sign language and
The author did participant-observation almost daily with whom they develop adequate communication.
during the one-year period of the research. Meadow7 found that such individuals have higher
Deafness is called an invisible disability, because self-esteem than deaf people with hearing parents.
it is only noticeable when a person attempts to com- Deaf people from deaf families see themselves as
municate.3 No visible indicators, such as the white carrying on a cultural tradition to which little or no
cane of the blind person, give other people cues about stigma is attached. Instead, they have a strong and
what to expect in communication with a deaf person. positive identification that carries them through life.
Once the disability is known, the impact of it may be American Sign Language, made up of signs, ges-
heightened.4 Hearing people often “freeze” and with- tures, finger-spelling, facial expressions, and body
draw from the situation or behave inappropriately. language, is often embarrassing or frightening to the
This type of behavior is so common that Schlesinger uninitiated. In any case, it is negatively perceived. It
and Meadow5 have labeled it “shock withdrawal is distinct from English and follows different gram-
paralysis.” Such a response to the deaf individual is in matical and syntactical construction.8 Until the past few
part due to the stigma attached to sign language, and years, when sign language systems based on English
374 Part II: Applying Medical Anthropology

were introduced, American Sign Language was the self-perception with reference to the in-group and to
only system of manual signs in common use in the the outside world. A deaf man said, “It’s not very nice,
United States. Regardless of the type of education but have you heard the expression, ‘deafy’?” As the
they received as children, most deaf Americans use author nodded yes, he continued, “It’s sad to say, but
American Sign Language as the main means of com- I know people I would have to call deafies. The major
munication in adulthood. characteristic of the deafy is fear of association with
The negative attitudes of hearing parents and hearing people.”
the general public toward sign language creates con- The sign for “deafy” (the thumb is put against the
flict about the language for its users. One informant ear and the fingers wave back and forth) is probably the
reported that whenever she started to leave the house most stigmatized expression in sign language. It sym-
to visit deaf friends, her mother said, “Oh, you’re not bolizes negative experience in deaf-hearing interaction
going out with those deaf, are you?” (referring to her and stands for deaf and dumb, in the literal sense. In
signing friends). The stigma attached to sign language talking about oneself in front of hearing people, the
further influenced deaf people’s perspective of the expression is used in several ways: (1) by highly edu-
world, so that they saw the world as being divided cated people as a form of irony or sarcasm, (2) by people
into two kinds of people: those who could hear and with minimal English language skills who are forced to
those who were deaf. convey their lack of understanding of the situation to
In adulthood deaf people demonstrate consider- a hearing person, and (3) to express anger and frus-
able ambivalence about their own language. Various tration at the hearing world for its construed wrongs
informants talked to me about how sign language against the deaf. For example, in a bitter denouncement
is “negative,” making the sign with particular force. of the oral method, one informant finished up with “I
Many individuals talked about how they are “for” didn’t learn anything—that’s why I’m a deafy.”
total communication, a recent innovative method in Early fears about the hearing world have been
deaf education, because it combines sign language maintained, characterized by the fear of being seen as a
with speech and lipreading and is thus more accepta- deafy by the hearing world. This often leads to negative
ble. Most noticeable, however, is the way signs change predictions about the fate of any deaf-hearing interac-
in the privacy of the group. In groups of deaf people tion. For example, a number of deaf people predicted
sign language becomes bigger and bolder than in that a program that planned to integrate deaf and hear-
public. Facial expression and body language take on ing aged would fail. In explanation, one informant
new dimensions, and the richness of the language is said, “Deaf don’t like to be around hearing.” Another
exploited to its fullest. informant acknowledged this attitude and said, “Some
deaf people get mad dealing with hearing people, but
my attitude is just to be calm—they [hearing people]
will gradually get used to it [the deafness].”
IDENTITY Many deaf people indeed have feelings of inferior-
ity which they express by the elaboration of signs that
American Sign Language is a symbolic badge of iden-
connote stupidity. Sign language has a large number
tity in the deaf community. Identity provides the
of signs for inferior mental ability, for example, stu-
individual with a sense of self and enables him or her
pid, ignorant, pea-brain, know-nothing, and dummy.
to relate that sense of self to the surrounding world.
One informant demonstrated how he felt about him-
Clark and Kiefer9 define identity as “that cognitive
self when he said to the researcher, “I’m dumb . . .
structure which gives a sense of coherence, continuity, You’re hearing-smart,” while another informant said
and social relatedness to one’s image of oneself.” Deaf of herself, “Me—no voice—dumb.” This perception,
identity is crystalized early in life and is maintained which correlates hearing with intelligence and deaf-
throughout the life course. As individuals age, deaf- ness with dumbness, was almost universal in individ-
ness defines their relationship to society. uals’ comments and underlines the stigmatized way
Deaf-hearing interactions are characterized by individuals see themselves.
ambiguity. Ambiguity regarding the degree of impair-
ment in disability has the most negative effect on inter-
personal relationships.10 An informant commented,
“People often talk to me and I can’t answer. I shake THE INFLUENCE OF COPING
my head and point to my ear. But they don’t under- MECHANISMS ON SELF-ESTEEM
stand-they think I’m stuck up.”
Regardless of the actual quantity of interaction Deaf identity is also shaped by social factors that
with either hearing or deaf people, conflict is kept alive engender a positive sense of self. The commonality of
in the person’s mind by the inconsistencies between experiences, the frequent interaction with other deaf
 37 Coping with Stigma: Lifelong Adaptation of Deaf People 375

people, and successful communication about intimate interactions to develop more fully as a person and to
aspects of everyday life help develop a sense of self- establish meaningful relationships with peers.
esteem that grows with time.11 Membership in a deaf community that integrates
In the process of personal development, deaf peo- the use of sign language and shared experience fosters
ple have evolved a range of coping mechanisms to self-esteem. During the course of fieldwork with the
deal with stigma. The primary way they do this is a aged deaf, a pattern in the interaction of deaf people
normalization process. The term normalizing has been could be observed to recur. When individuals were in
used to describe the response of chronically ill and a group of deaf people they were talkative, confident,
disabled people in different situations. In this context, outgoing, and relaxed. When they were interacting
normalizing refers to a strategy of social interaction. with people with normal hearing, whether alone or
For example, Davis12 uses the term to analyze the with only a few deaf people present, they became
social behavior of children with polio, while Strauss13 quiet and hesitant. Thus, their self-perceptions shaped
discusses normalizing in terms of disease manage- two different kinds of behavior, one convivial, socia-
ment. Normalizing is situational, and everyone expe- ble, and gregarious, the other wary, timorous, and
riences the need to normalize at one time or another. withdrawn. This dichotomy in their behavior reflects
The concept covers a broad area of behavior. Normali- the ultimate ways in which they have adapted to their
zation can occur within any group that is set apart by disability, and softened the effects of stigmatizing
deviance or social marginality. Within the tightly knit situations.
reference group of elderly deaf that I studied the nor-
malization process took place primarily within the
group. The introduction of outsiders invites cogni-
tive dissonance. During the initial field experience, VALUES AND SOCIAL BEHAVIOR
people were reticent to talk to me. As a hearing person
I was a threat to their feelings of normality. Outsiders Among the aged deaf I studied, being deaf is the single
serve as reminders (both in fact and fantasy) that the most important factor in their lives. One owes allegiance
world is not necessarily the way it is perceived by the to deafness because of early communication problems
in-group. For this reason, the in-group seldom accepts where individuals could communicate only with peers.
outsiders who are not deaf. Even adult children of One must further the good of the community, putting
deaf parents who are native signers are on the margin it before oneself, if necessary. Conformity to a group
of the group if they can hear. norm serves important functions, especially for those
In contrast, interaction within the in-group who must continuously deal with their own noncon-
enhances feelings of normality, reinforces positive feel- formity. Conformity decreases feelings of deviance
ings about one’s abilities and validates one’s worth. An and, at the same time, heightens feelings of belonging-
informant said, “At the suggestion of the minister, my ness, a process that occurs both consciously and uncon-
parents finally sent me to the state school when I was sciously. This process is related to deviance disavowal.
18 to learn sign language. I made a lot of friends there, Davis14 used this term in discussing the response of
and it made me realize how lonely and friendless my nonstigmatized individuals’ behavior toward the stig-
childhood had been.” He began to socialize with deaf matized. As part of the normalization process, how-
people, going to the Deaf Club and to social events ever, the aged deaf dissociate themselves from others
at the state school. After dating a number of deaf who suffer from a different social stigma: ethnic and
women, he met his wife-to-be. She had grown up in racial minorities, the socially deviant, and those with
state schools and had an extensive network of friends other disabilities. For example, after stating that her
from childhood. When they married, he was included hearing niece had been hospitalized in a mental institu-
in this social network and developed his own friend- tion, one woman added quickly, “But I never see her. I
ships within the group. As the years passed, he took don’t have anything to do with her.”
on leadership responsibilities in the church and deaf In the process of normalization, symbols of stigma
social organizations in which he and his wife were undergo a transformation in which the negative aspects
members. His interactions with hearing people were of the symbol become a means of self-affirmation. One
gradually reduced, and when he retired, his social life example is the single sign for “I love you.” This has
with hearing people ended. become a much-used symbol in the 1970s—in greeting
This story records a typical reaction to the diffi- one another, in speeches, on bumper stickers, and in
culties inherent in deaf-hearing relationships. Once graphics intended to educate the hearing world about
the individual has begun to reconcile the dilemma of deafness. The sign originated in the California School
trying to function as a hearing person and to begin for the Deaf some 40 years ago when the school used
to accept his or her deafness as a reality of life, he or the oral method and signing was prohibited. Students
she can devote energy formerly used in frustrating would arrange their fingers in the sign configuration
376 Part II: Applying Medical Anthropology

and walk down the hall, dangling a hand casually at REFERENCES

their side or holding it against their books.l5 Through
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5. Schlesinger, H. S., and Meadow, K. P. 1972. Sound and Sign.
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In efforts to counteract what Goffman16 refers to as ties of deafness. Journal of Health and Social Behavior 9: 299.
spoiled identity, and to develop as individuals, aged 8. Stokoe, W. C. Sign language structure: An outline of the visual
deaf people have lived their lives on two levels: (1) the communication systems of the American deaf. Occasional Papers
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10. Zahn M. A. 1973. Incapacity, impotence, and invisible impair-
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laden interaction with strangers, although they are Health and Human Behavior 14: 115.
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