Thinking about disability identity

Major themes of disability identity are explored.

By Dana S. Dunn, PhD, and Shane Burcaw

In psychological research, the term identity is often used to refer to the self, expressions of individuality and the groups to which people belong. Our identities define us because they contain personality traits and highlight social roles, and they can be focused on our past, present and future selves. Disability is a particular identity context, one that marks individuals as part of a group and as members of a minority sometimes subjected to marginalization, prejudice or discrimination. Disability identity refers to possessing a positive sense of self and feelings of connection to, or solidarity with, the disability community. A coherent disability identity is believed to help individuals adapt to disability, including navigating related social stresses and daily hassles.

Identities help people make sense of different and distinct parts of their self-concepts. For people with disabilities, an identity should contain relevant content and goals linked to disability. In effect, disability identity should guide people with disabilities towards what to do, what to value and how to behave in those situations where their disability stands out, as well as those where it is not salient. To explore disability identity, we decided to examine some published narratives written by people with disabilities. Disability narratives are the stories people with disabilities tell about their lives and experiences that can highlight issues of disability identity.

Six Themes in Disability Narratives

Our review of the available literature identified six main themes regarding disability identity: communal attachment, affirmation of disability, self-worth, pride, discrimination and personal meaning. We briefly define each theme. 

Communal attachment. A recurring theme in the formation of disability identity is the importance of community, where people with disabilities are actively engaged with their peers due to common experience. Some research suggests that a sense of communal attachment, a community-based form of identity integration, is like “coming home” for many people with disabilities. 

Affirmation of disability. A second personal identity factor is that many people are disposed towards the affirmation of disability. Personal affirmation of disability is a way to feel included in society by having the same rights and responsibilities as other citizens, to be recognized and treated like everyone else within a group or society more generally. 

Disability identity politics and activism. Three themes are relevant to disability identity as understood within psychological contexts where politics and activism emerge: self-worth, pride and awareness of discrimination. Self-worth, the idea that one values oneself, is dependent on an individual’s ability to perform activities or tasks viewed as important to the self, others and society more generally (e.g., performing activities of daily living). A sense of self-worth enables people with disabilities to see themselves as possessing the same worth as individuals who have not experienced a disability. Distinct from self-worth, pride refers to being proud of one’s identity and, in the process, acknowledging possessing a socially-devalued quality, such as a mental or a physical disability. Pride encourages people with disabilities to “claim” rather than deny or mask disability. The third domain, discrimination, entails awareness and recognition of the reality that people with disabilities are often the targets of biased, prejudiced and unfair treatment within daily life. In the short run, such negative attitudes are “invisible barriers” during rehabilitation, whereas in the long run such prejudicial attitudes and discriminatory behaviors serve as ongoing disruptions to daily living. 

Personal meaning and disability. Finding meaning, entailing searching for significance and finding benefits associated with disability, is an important aspect of disability identity because it can represent personal acceptance. Constructive acceptance of one’s life situation, then, can solidify the meaning of disability while promoting a favorable disability identity. Searching for meaning following the onset of disability often results in the discovery of a “silver lining.”

Reading Disability Narratives

There are many published narratives by people with disabilities that describe their disability identity development. We examined six such narratives (see the below list of sources) written by people with disabilities in order to identify excerpts illustrating instance of the six disability identity themes (the excerpts can be found in Dunn & Burcaw, 2013). We encourage interested readers to explore the six themes within the following works on their own (the prominent theme associated with each work is noted in parentheses at the end of the citation).

Cole, J. (2004). Still lives: Narratives of spinal cord injury. London, England: Bradford Books. (self-worth)

Drolsbaugh, M. (1996). What is deaf pride? (pride)

Johnson, H. M. (2005). Too late to die young: Nearly true tales from a life. New York: Henry Holt and Co. (affirmation of disability)

Linton, S. (2007). My body politic: A memoir. Ann Arbor, Mich.: University of Michigan Press. (communal attachment)

Saperstein, J. A. (2010). Atypical: Life with Asperger's in 20 1/3 chapters. New York: Penguin Group. (discrimination)

Tollifson, J. (1997). Imperfection is a beautiful thing: On disability and meditation. In K. Fries (Ed.), Staring back: The disability experience from the inside out (pp. 105- 114). New York: Penguin Group. (personal meaning)

Identity and Disability

Powerful stories leave lasting impressions. Perhaps reading and reflecting on disability narratives can encourage some individuals with disabilities to reflect on their own disability identities. Some may elect to forge closer ties with the disability community while others may consider whether their own journeys and stories contain elements of pride, affirmation, self-worth or some other aspect of disability identity. Individuals who develop a chronic disability later in life might well find the identities portrayed within some narratives to be a helpful resource for navigating the initial phases of disability or the experience of rehabilitation therapy. Family members, caregivers and allies of people with disabilities, too, can benefit from learning about disability identity and the themes represented within disability narratives. By reading, listening to and reflecting on the content of people’s stories, rehabilitation researchers, practitioners and other professionals can learn to recognize disability identity as an authentic and important aspect of the social psychology of disability.

For more detail about disability identity and this narrative research, please consult: Dunn, D. S., & Burcaw, S. (2013). Disability identity: Exploring narrative accounts of disability. Rehabilitation Psychology, doi:10.1037/a0031691

About the Authors

Shane Burcaw is a student at Moravian College and the author of the blog Laughing at My Nightmare. Current CDIP member, Dana Dunn, PhD, is a professor of psychology and assistant dean for special projects at Moravian College. This research was made possible by the 2012 Moravian College SOAR Grant.