Autumn, 1998, Vol. 5, No. 1

The Deaf Identity Double-Bind: Culture Versus Disability

Jessie Cohen: 2^nd Year Clinical

Introduction

Enacted in 1990, The Americans with Disabilities Act (ADA) seeks to protect and advance the civil rights of individuals with disabilities. Based on the public policies delineated in the ADA, disabled individuals are entitled to equal accessibility and the rights of full citizenship, including accessibility to transportation and reasonable accommodation in employment. However, in order to qualify for social services- such as supplemental security income (SSI), education assistance, interpreters, or job training and placement, individuals are required to acknowledge some form of either a physical or emotional disability. Herein lies the issue with which human service providers often struggle: when working with populations considered by the ADA to be eligible for social services, what level of responsibility do we have to clients that do not claim to be hindered by any disability. In the case of the deaf, from a hearing service provider’s perspective, the conflict between a disabled identity and the cultural identity of the population is at the heart of this issue.

Deaf Culture and Identity

For the deaf, and for professionals who work with them, defining disability is not as simple as hearing or non-hearing. If one were to ask an audiologist, a speech pathologist, a vocational rehabilitation counselor, or a social worker to comment on their fields’ perspective of a deaf individual, one would get a multitude of responses (Vernon & Andrews, 1990). The medical perspective views deafness as an audiologic impairment noted by a decibel loss that ranges from mild to profound; severity of the loss, etiology, and the age of onset all contribute to how a medical professional comes to understand the identity of the client. When utilizing the degree of loss as the identifying variable, an individual can be considered deaf, hard of hearing, or hearing impaired. Individuals within this population may identify as hard of hearing and function simultaneously within hearing and deaf worlds. Still others, who have enough hearing capacity to use the telephone, may opt to use little speech and identify as a deaf person. However, it is important to recognize that when a deaf individual’s identity is based solely on the level of access one can attain in the larger hearing world, an individual’s capacity may be falsely determined, for both internal and external forces can contribute to identity formation and individual capacities.

In particular, the meaning one constructs of his or her own life plays an important role in shaping identity. Especially for deaf, early experiences of limited access and isolation based on communication differences can impact how they come to know and value themselves. Vernon and Andrews (1990) conclude that a "psychology of deafness" exists that serves to isolate deaf not only from other people, but also from knowledge, thereby contributing to their perception of self, their place in the larger hearing world, and their place within deaf culture and community.

One of the primary factors in the development of deaf culture has been the establishment of a native language, or as it is more commonly referred to, American Sign Language (ASL). Yet, due to the varied dialect found in differing parts of the country, as well as the multitude of existing languages, ASL is not universal. While there are other manual systems used to communicate within the United States (Pigeon Sign Language, Signed Exact English, and the Rochester method), ASL is the only "true" language. Linguists who study deaf individuals that use ASL have concluded that the language contains all the components necessary to be used in complex communication. For example, facial expression, active use of self, and body language are central parts of sign; often, they replace, and are considered equivalent to, tone inflection or verbal cues in spoken English. In general, deaf individuals are flexible and able to adapt to systems other than ASL, especially when communicating with a hearing person who may lack true fluency in ASL.

Regardless of the sign method utilized, language and communication represent the essence of deaf culture. Thus, as a core factor of their identity, the deaf community does not wish to see their native language manipulated or altered. As Higgins proposes, "Since ASL is an important element of the deaf community, tampering with sign language is resisted and is considered to be tampering with the deaf community’s identity" (Vernon & Andrews, 1990, p. 9). I was recently involved in a discussion related to the manipulation of ASL that revealed that this issue clearly resonates within the deaf community. While one individual felt that because he was deaf he could actually create new signs, the other deaf individual felt that this personal utilization of "non-signs" was not a true use of ASL. Because language and communication play such a key role in how deaf individuals perceive themselves, any tampering of sign is seen as a possible threat to individual and cultural identity.

In addition to communication preference, there are other factors that not only affect how deaf individuals may chose to identify themselves, but also how they are perceived within the deaf community. Race, cultural heritage, generational differences, or additional diagnosis (physical or emotional) can all impact a deaf individual’s sense of self and membership in the deaf community. Similar to other populations that share characteristics, Higgins believes, "Membership in the deaf community involves identification with deaf people, shared experiences in school and work and active participation in group activity with other deaf people... deaf community members share frustrating experiences trying to communicate in the hearing world" (Vernon & Andrews, 1990). Although hearing people who use ASL may be considered "courtesy" members of the deaf community, "…only deaf individuals can really know what deafness means" (Vernon and Andrews, 1990).

In recent years, the deaf community has made efforts to preserve and enhance their cultural identity. Organizations and clubs that do not focus on deafness as a disability are being created that validate and affirm the deaf culture addressing socialization, communication, family support, literacy and mental health services. A National Theatre of the Deaf, an American Athletic Association of the Deaf, a National Center for the Law and the Deaf, and many social clubs and religious affiliations have been developed. The National Association of the Deaf alone serves over 22 million deaf and hard of hearing individuals. In addition, support and advocacy groups have been created for late-deafened adults and children of deaf parents. Further, several universities have instituted ‘Deaf Awareness Week’ celebrations and ASL is offered as a foreign language course.

Clinical and Policy Implications

From my experience working with the deaf, it seems that identification within the deaf community is related more to one’s communication preference and construction of personal life meaning than the actual degree of hearing loss. Saleebey speaks to the workers responsibility in attending to this meaning, "Culture gives meaning to action…Practice is an intersection where the meanings of the worker (theories), the client (stories and narratives), and culture (myths, rituals, and themes) meet" (Saleebey, 1994, p.351). Clearly, professionals more sensitized to identity issues within the deaf community have a greater likelihood of viewing the deaf as a cultural group. Indeed, as outlined above, a richly layered deaf culture comprised of language, traditions and values, does exist. As the deaf community has mobilized over the last two decades, there has been less and less of a focus on deafness as a disability. Instead, pride and affirmation of the ability to access the world using a native language have been emphasized. However, in order receive social services that will assist deaf individuals in fully accessing the world, deaf must acknowledge, on some level, a disability. Yet, some deaf are unwilling to do so; rather than acknowledge a disability and compromise their cultural identity, they refuse services.

But perhaps it is not the deaf who struggle between a cultural and disabled identity, but the providers who serve them. While we may not see deaf individuals as severely handicapped or disabled, they do often have a handicap to equal opportunity. It seems reasonable that accommodation and compensation should be made in order for the hearing and deaf to reside together. We must remain thoughtful of whether or not the services we offer, that we perceive as necessary to flatten the playing field for deaf individuals, compromise the deaf cultural identity. Clearly, the caution would be to replicate oppression present in the larger society. As professionals, we must view deaf clients in macro and micro contexts to best ascertain treatment needs. Only as we return to basic social work principles of "meeting clients where they are" and engaging with them through empathic response will a true understanding of how the identity of each deaf individual surfaces.

Provision of services to ensure equal access in the larger hearing world should not be at the expense of cultural pride. Consider a deaf individual, who meets the full criteria of a job, sitting in a meeting where she cannot understand the spoken word. The necessity of an interpreter in this instance, I believe, is not a factor in her essence and identity. Thus, accessing the assistance of an interpreter, or other services such as job training, should not require a disabled self-classification. A former colleague, who herself is deaf, stated, "While there are limited resources and language difficulties, deafness should not be the primary criteria."

In more ways than one, deaf individuals have shown us that they do not consider themselves to have a disability, yet, as practitioners, we often fail to move beyond their disability in treatment. By primarily focusing on their deafness, we close ourselves off to the other issues and challenges which deaf individuals present, and may, in turn, deter them from engaging in treatment. Sue and Sue (1990), who have done extensive work on minority cultural identity formation, state, "The high failure-to-return rate of many culturally different clients seem intimately linked to the mental health professional’s inability to accurately assess the cultural identity of the client" (Sue and Sue, 1990, p. 94). Moreover, the deaf are not a homogeneous group. In particular, there exist racial minorities, gay and lesbian, and elderly where treatment needs may or may not be overtly related to deafness. Noteworthy is that deaf women and deaf racial minorities retain higher unemployment rates, receive lower incomes, and are afforded less educational opportunities than corresponding white deaf individuals. Still others have onset of deafness related to other genetic syndromes producing other medical conditions Furthermore, a high percentage of deaf have experienced problems with substance abuse (approximately 50-60%).

Conclusion

Deafness in isolation should not be considered a disability. Clearly, deaf identity is shaped by both external and internal forces. Regardless of preferred state of identification, deaf, as a cultural minority, and, as a group that does not use spoken English to communicate, are more vulnerable to oppression. As a discipline that works with diverse populations and multi-problem systems, the likelihood of encountering a deaf individual in treatment is high. We may work with a family who has one deaf member. We may run a support group for women and have one deaf member with an interpreter. We may work in a school or hospital setting with a hard of hearing child or patient. In providing services to this population, then, we must respect and acknowledge the existence of a deaf culture, as well as educate ourselves on the impact these forces have on deaf identity formation. Only then, will we be able to provide thoughtful and sound intervention.

References

Saleebey, D. (1994). Culture, theory, and narrative: The intersection of meanings in
practice. Social Work 39(4). (pp. 351-359).

Sue, D.W. & Sue, D. (1990). Counseling the culturally different theory and practice.
New York: John Wiley & Sons.

Vernon, M. & Andrews, J. (1990). The psychology of deafness. New York: Longman
Publishers.

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