climb disabled mountains and tell disabled stories. If there was a country called disabled,
I would say she has immigrants that come to her
From as far back as time remembers. If there was a country called disabled,
Then I am one of its citizens.
I came there at age 8. I tried to leave.
Was encouraged by doctors to leave.
I tried to surgically remove myself from disabled country
but found myself, in the end, staying and living there. If there was a country called disabled,
I would always have to remind myself that I came from there.
I often want to forget.
I would have to remember…to remember. In my life’s journey I am making myself
At home in my country.
This paper examines the psychosocial identity development theories of Erik Erikson, William Cross, Vivienne Cass, and Linda James Meyers and the current understanding of disability identity development. Part I of the paper will review the theories and their intersections with the disability experience. Part II will be a selected critical review of literature related to disability identity development, though there is little existing literature specifically on the topic. The literature reviewed will primarily be qualitative research that has been conducted to explore identity issues within the disability experience.
Disabled Americans have been working for social and political change in society over the past thirty years, just as women, African-Americans, gay people and other social minorities have struggled for equality. As other groups have done, disabled people have been engaged in what Anspach (1979) calls “identity politics”; politics that endeavor not only to change society’s conception and response to disabled people, but also to change the self-concepts of disabled people themselves. The struggle to begin to change how society views disabled people culminated in a political victory at the signing of the Americans with Disabilities Act in 1990; a law that acknowledges people with disabilities as a discriminated against minority group and, as such, deserving of civil rights protections under the law. The work of disabled people in changing how they think about themselves continues, as the disability community struggles for self-definition and self-determination, as well as for civil rights. Hahn (1985, p.310) asserts, “one of the most important problems facing the political struggle of people with disabilities is the necessity of developing a positive sense of identity.” It is this personal-identity piece of Anspach’s “identity politics” that will be the focus of this study as I seek to understand the process of how people with disabilities come to develop positive disability identities.
The very idea of a positive disability identity flies in the face of long-standing social “wisdom” about disability. The reason for this lies in the cultural beliefs about disability that have determined the status and perceptions of disabled people in our society today. Historically, disabled people were viewed as social and moral deviants, violations of the natural and cosmic order of the universe. The response to such “deviance” was to protect society by separating disabled people from society in asylums, jails, basements, attics, etc. (Bryan, 1996; Crewe & Zola, 1983; Shapiro, 1993; Treanor, 1996). Disabled people were not considered fully human, had no role in society, and no basis for a positive social identity (Goffman, 1963; Parsons, 1951; Zola, 1993a; Herman & Miall, 1990).
The predominant contemporary view is a “medicalized” view of disability as a physical or psychological “defect” -- a violation of the “normal” order (Longmore, 1993; Robertson, 1994; Phillips, 1985; Davis, 1995; Gallagher, 1995). This view places disability in the category of pathology and disabled people in the category of “sick,” an invalid needing to be cured or, at the very least, corrected as much as possible (Longmore, 1987; Zola, 1993a; Goffman, 1963; Kirschbaum, 1991). In this “sick” role, disabled people are not seen to be capable of fulfilling adult roles (Goffman, 1963; Kirschbaum, 1991), but childlike, pitiful, dependent, helpless, emotionally unstable, weak, unattractive, asexual, and unintelligent (Fine & Asch, 1988; Rousso, 1988; Hillyer, 1992). Rehabilitation medicine offered a means of ameliorating the stigma of this “sick” role through medical interventions and much hard work on the part of the disabled person. The possibility of achieving some semblance of “normalcy,” through a continuous effort to “overcome” one’s disability, finally provided a socially acceptable role for disabled people in society (Longmore, 1993; Phillips, 1985; Herman & Miall, 1990; Parsons, 1951). This contemporary view continues to perpetuate the belief that nothing positive can be associated with disability itself. Redemption is only found in working to eliminate or hide the disability, which continues to undermine the very grounding of a positive disability identity.
It is only within the context of disability as a minority experience that we begin to find the basis for a positive disability identity. Community is defined as “a sub-group within society, which is perceived or perceived itself as distinct in some respects from the larger society” (Rappaport, 1977, p.3). As other minority groups were challenging society’s negation of their unique ways of being in the world, individual disabled people and their families began to challenge their status in society (Shapiro, 1993). Atkinson, et al. (1989) define a minority as “a group of people who, because of physical or cultural characteristics, are singled out from the others in society in which they live for differential treatment” (p.8). Disabled individuals began to attribute their limited opportunities to discrimination, not the result of their disability, and in successfully challenging discrimination laid the groundwork for positive individual and collective disability identities (Weeber, 1999).
It is for this reason that the literature and theories of psychosocial identity development, particularly minority identity development, provide a useful framework for exploring the concept of disability identity development as a minority culture phenomenon. Within the literature of identity development, few theorists have explicitly addressed the issue of disability, yet the models provide fertile ground for exploration. In contrast, an extensive body of rehabilitation literature exists that is grounded in the medical view of disability that has generated research findings that support and reinforce a medicalized view of disability. Such a literature may provide an understanding of the context out of which a positive disability identity must struggle for development, but is insufficient as a framework for exploring disability identity development itself. For this reason, the research literature review will need to explore concepts relating to disability identity from a variety of social science disciplines that will be examined for cultural views of disability, as well as the validity of the findings from a disability community perspective. The final group of research will be from the developing body of work on disability identity development from the disability community perspective itself.