Understanding Disability Identity and Implications for Future Study

TMA Board Member and Paralympian Dr. Anjali Forber-Pratt and her colleagues recently published a systematic review of studies on disability identity development. In past years, psychologists and researchers have developed models of both identity development and disability identity development. Dr. Forber-Pratt is interested in how individuals develop their disability identity, and believes this research could be critical in developing support systems for individuals with disabilities and the greater disability community. By conducting a review of existing articles, the researchers aimed to provide individuals with disabilities, community leaders, special educators, counselors, psychologists, and the disability community with more information on the process of disability identity development.

The researchers searched academic journal article databases for their search of studies. Results were limited to peer-reviewed articles written in English between 1980 and 2017. Of the 144 articles they found, 41 were included in the researchers’ review.

The researchers’ review yielded two main findings. First, disability identity shapes the way individuals see themselves, their bodies, and interactions with their surroundings. People with disabilities not only have to navigate physical components of their disability but also what social meaning is attributed to that disability. These physical and social aspects combine to form a person’s disability identity, which should be considered both in relation to other intersectional identities (such as LGBTQ, racial identity, cultural identity, etc.) and independent of other aspects of identity. The second finding from this review is that disability identity development has been studied mainly through qualitative measures rather than quantitative measures. Larger scale studies that use a more comprehensive approach are needed to better understand disability identity development. Support is needed for research that spans across different disability groups to better understand the effects of multiple disabilities on a person’s development of disability identity.

This literature review highlights the need for awareness of disability identity development, especially for individuals and organizations that impact the lives of people with disabilities. This is especially true of rehabilitation professionals, educators, and caregivers, who are often able-bodied which can cause tension and cause the person with a disability to seek out support independently. Additionally, with more research, we can gain a better understanding of disability identity development and create interventions that better assist individuals who are in the process of developing a disability identity. Another finding of this literature review is that disability identity includes both an acceptance of one’s disability as well as involvement with the disability community. Large-scale, community level research is needed to learn more about the role the disability community plays in identity development.

There are barriers that can prevent people with disabilities from participating in research. For example, people may be reluctant to participate in research or may not have access to materials. Some people may not wish to be identified with having a disability at all. Also, there were few studies which included individuals with higher support needs, such as those with adaptive communication devices or those who have more than one co-occurring disability. These barriers are representative of the struggle people with disabilities face with accessibility and social stigma.

Forber-Pratt AJ, Lyew DA, Mueller C, Samples LB. Disability identity development: A systematic review of the literature. Rehabil Psychol. 2017 May;62(2):198-207. doi: 10.1037/rep0000134. Epub 2017 Apr 13.

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