What is Disability Identity Development, and Why is That Important?
By Carlyn Mueller, Brad Minotti and Anjali Forber-Pratt
Ask any person with a disability: When was the moment when they were told, either openly or indirectly, that they were “different” in some way?
Each person will have a different answer, story, or way of understanding their disability. This is one way of beginning to understand an individual’s disability identity, which is a unique aspect of identity that includes a person’s sense of self as a person with a disability, as well as their connection to the disability community.
Research on other aspects of identity tells us that understanding identity is fundamental to leading a psychologically, physically, and socially happy life. People develop and integrate many aspects of who they are, including their culture, ethnicity, sexual orientation, socioeconomic status, and gender in order to understand their identity. This process does not happen in isolation; we learn about our identities through relationships and modeling of others. Disability identity, then, is an essential part of understanding people with disabilities and in designing services, supports and communities to develop that identity in positive ways.
One way of understanding disability identity development is through developmental phases, or statuses. Our research team at Vanderbilt University, led by Dr. Anjali Forber-Pratt, developed the Model of Social and Psychosocial Disability Identity Development to understand disability identity. This model has four statuses:
- Become disabled and/or born with disability
- Person accepts own disability
- Close friends and family are accepting of the disability
- Person meets others like herself/himself
- Engages in conversation with these individuals
- Learns about the ways of the group
- Adopts the shared values of the group
- Become a role model for others
- Help those who may be in other statuses
- Give back to the disability community
For additional information, you can read the full article here:
It might be tempting to think about identity as a linear process with a definitive beginning, middle, and end point. Instead, think of disability identity as an ongoing process, where individuals might experience several of these statuses across their lifetime, in varying orders and sometimes even simultaneously. For example, an individual with a disability may have a hard time accepting that they have a disability or may not want to interact with others who have disabilities for fear of social stigma. Understanding the statuses of disability identity helps give us language to describe the process that a person with a disability goes through in developing that identity. It also helps us in naming and solving shared problems and barriers that block a positive sense of self in relation to disability.
Research also helps us understand school as a key setting where adolescents and young adults are getting varied ideas and messages about disability. While disability identity is likely developed even earlier, psychological and identity research reminds us that a major goal of adolescence and young adulthood is in figuring out who they are.
In one study of high school students labeled with learning disabilities, emotional/behavioral disorders and autism, adolescents were found to be highly aware of the disability labels assigned to them and described those labels in negative ways (as something wrong with them, often “given” to them by adults). In response, students attempted to distance themselves from their disability label through comparison to peers with more significant disabilities, attempting to “overcome” their disability and exit special education, or hiding their disability from peers and friends. This might be an unsurprising study, given how students are bombarded with negative messages and the stigma of disability from many different aspects of their lives. It also highlights the importance of teachers, related service providers, and other support systems in consciously counteracting that stigma and developing disability community.
Many young adults continue to develop their own identities during their time at a college or university, and we see similar patterns of disability identity and disability stigma affecting college students’ behavior and school experiences. Additionally, this is a major period of transition for many college students, and one that brings many opportunities and challenges. For students with disabilities, the stigma surrounding disability on campus and their own sense of disability identity may play an important role in their willingness to seek out disability-related support and accommodations.
According to one study, students with disabilities often are reluctant to reach out for support from the campus disability services office because they want to avoid the stigma of being labeled as a student who needed accommodations because of their disability. We know that these accommodations are often essential because they remove barriers in the classroom that may hinder the academic success of students with disabilities. It is important for professors, disabilities services staff, and other student groups to raise awareness around the stigma surrounding disability on college campuses so that students can develop a positive sense of disability identity and feel comfortable advocating for the support that they need.
The development of a positive sense of identity is key to long-term psychological well-being. Therefore, it is vital that individuals with disabilities are given the tools, support, and resources to develop their disability identity, which is an aspect of identity that is often overlooked. One possible way to support the exploration and development of disability identity is to offer opportunities where individuals with disabilities feel supported and are able to learn about positive experiences of others with disabilities. These positive interactions and experiences with others with disabilities are very important to developing a healthy disability identity. Furthermore, teachers, parents, and others who work with individuals with disabilities can play a key role in creating opportunities for the development of disability identity.
Disability identity, because it is about an individual’s own experience of their disability, is experienced in some way by everyone who has a disability. How this identity is expressed might look different based on each individual’s ideas, communication styles, and relationship to their own impairments. For example, they might participate in community by visibly seeming excited or comfortable when they go to certain disability community events. Most importantly, we think it is important that all people with disabilities are seen as part of a broader, powerful and rich disability community.
If you are interested in reading more of our research on disability identity development particularly focused on adults, you can check out our newest paper:
Forber-Pratt, A.J., Merrin, G.J., Mueller, C.O., Price, L.R., & Kettrey, H.H. (in press) Initial factor exploration of disability identity. Rehabilitation Psychology. Advance online publication. https://www.ncbi.nlm.nih.gov/pubmed/31944783
I want to thank Carlyn, Brad and Anjali for taking the time to help us understand the importance of an individual’s disability identity and to share some ideas to help foster the development of that identity. Their work highlights the value of having people with disabilities involved in and leading research. Too often the voices of those with disabilities are not heard. These three are helping change that. Thank you!
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Carlyn Mueller is an Academic Pathways Postdoctoral Fellow in the department of human and organizational development at Vanderbilt University. She earned her Ph.D. in special education from the University of Washington in Seattle. A multiply disabled scholar, she is interested in understanding development of disability identity in special education contexts and in conducting research that privileges the voices and knowledge of people with disabilities.
Anjali J. Forber-Pratt, Ph.D., assistant professor in the department of human and organizational development with secondary appointment in the department of special education at Vanderbilt University in Nashville. She is also a member of Vanderbilt Kennedy Center for Research on Human Development. Her primary area of research relates to disability identity development. She presents regularly at state, national, and international conferences and is author on 28 peer-reviewed journal articles and numerous chapters. As a wheelchair-user herself for more than 30 years, and a two-time Paralympian and medalist, Dr. Forber-Pratt is also nationally and internationally recognized as a disability leader and mentor.
Bradley Minotti is an undergraduate psychology major at the University of Florida. He is interested in conducting research related to mental health among people with disabilities. As a student with a physical disability, he is also passionate about advocating for students with disabilities at his university through his involvement in various campus organizations.
January 21, 2020