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Disability Identity- What It Is And How You Can Help Create It

Writer's picture: Annie KrollAnnie Kroll
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Throughout my masters program, I have been learning about the importance of forming a disability identity, and how others can play a role in forming it. This week, I want to share what I have learned through my experiences navigating my own disability identity.

 

What is disability identity?

Disability identity is a person's sense of self in relation to their disability. It is how someone with a disability makes sense of themself, and their place in their environment. Different things can contribute to disability identity, including access to a community of similarly disabled people (Byatt et al., 2017), how people around you talk about disability (Dwyer, 2022; Mueller, 2019) and peer attitudes towards disability (Albert et. al., 2016; Mueller, 2019). I want to talk about each one of these points and tell a story that shaped my disability identity to where it is today.

 

Access To A Community

Having access to a community can play a large role in disability identity, because having people who can relate to you can help create a sense of belonging. In the deaf and hard of hearing community, for example, being integrated into the community by speaking sign language can lead to more of a cultural identity, while those with tools like hearing aids or cochlear implants who either only read lips or both speak and use sign language could feel less integrated into the deaf community (Byatt et al., 2017).


In my experience, my identity surrounding disability has been affected by having a lack of community. For my hereditary spastic paraplegia, it is rare to be diagnosed at 15 so I didn't find many people who could relate to my symptoms or story. Now, while I am very lucky to only have the symptoms I have, it is less common so I have felt isolated. With my autism, I am often the only autistic person in a group. I haven't made many autistic friends, and I sometimes struggle to read other cues that are not expected because I haven't had practice trying to judge what they mean. While I have been in Facebook groups or equivalent circles, overall I feel very limited in my community of other disabled people. This isolation has lead to me to feel isolated when being in spaces for disability.


 

Technical Language Around Disability

How disability is referred to in conversation by support professionals and in media can play a large role in how others perceive disability. In the autism community, there are currently two main ways to refer to someone with autism. One is person first, or person with autism, while the other is identity first, or autistic person. Person first language aims to separate the person as more than their disability, while identity first aims to highlight that you can't separate someone from their autism. How we refer to autism can influence small ways in which we think of autism as a whole. Ultimately, the goal is to use whatever language each autistic person wants so there is not a total right answer to this question (Dwyer, 2022). I will note however, that I use identity first language with myself.


Many kids with IEPs feel shame about their disabilities because they adopt medical model school standards as their identity. A while back, I wrote a post about the medical model and social model of disability. The medical model of disability is a model that views disability as a deficit that needs to be cured. Mueller (2019) provided examples through interview transcripts of children who were not fully aware of their disability but did know that they were lacking in certain skills like reading or math. This resulted in shame around their disability, because the kids were basing their worth off of what are adult measurements of standards. It is important for practitioners to be mindful of how they talk about disability, because often medical and academic practitioners can be a first introduction for disability services and support.


I use identity first language in my own life, because I am coming to accept my own autism. As a kid, it was something I tried to distance myself from because I could not ever find a way to explain it to my peers without backlash in some way. Only recently have I begun to outwardly accept that I am autistic, and that being autistic is not bad or something to hide. Embracing new language has positively shaped my disability identity, because I am able to find empowerment through how I talk about myself.


When I was a kid, I did social skills therapy where if I did something wrong, I felt punished by my therapist at the time. Through this practice, I grew to despise my autism because I couldn't ever figure out why I was getting scolded at or why I couldn't figure it out. I was only considered to be successful at that program after I shut down. It took a lot of work for me to undo that negative identity formation. Now I have great support people who help me to answer questions I might have while also validating the fact that I am neurodivergent. My masters program so far has had a positive place in my disability identity formation because I feel like not only is there room for me to be disabled, but my disabilities enhance my experiences.

 

Peer Attitudes Towards Disability

How peers talk about disability can influence how disabled students interact with their disability. While many children felt compelled to stand for peers who were called retarded, or the R word, when the peer had an intellectual identity, significantly less students stood up for peers when the person being called the R word did not have an intellectual disability (Albert et al., 2016). Using a term for a disability negatively can still have negative consequences towards how someone with a disability thinks about themselves and their capabilities, even if the negative terms are not being used directly about someone with a disability. Many kids who received IEPs would try to hide their learning disability needs to try to fit in (Mueller, 2019). This could include doing classwork at home to avoid others seeing how you complete the work, lying about why you leave class, or other ways of adjusting behavior to avoid other students finding out.


Having language used negatively has hurt how I view my disability identity. As a kid, I had many peers spread rumors about me that I was dramatic or faking my mobility challenges. I felt judged, and isolated during that time because I couldn't change anything that was happening. While I never did adjust my behaviors to hide what I was going through when I was newly diagnosed with hereditary spastic paraplegia, I did wish it was less noticeable at times. How my peers talked about me made it harder for me to feel confident to use tools that I needed like mobility aids or accomodations. On the flip side, when other students would offer to help me if I fell or tell people to leave me alone, I not only appreciated that person but also found myself finding normalcy in being disabled.

 

Overall, forming my own disability identity was and is a lifelong process. While I have had some negative experiences in the past, I have done a lot of work to find pride and neutrality in being disabled. The process of finding an identity is not limited to being disabled, and any minority status can create different dynamics in how you interact with the world. My hope is that by sharing how disability identity is formed, we can all be better allies to those who are disabled by being mindful of what we say about disabilities, how we communicate with others, and how we think about accessibility.

 

Thank you for reading about disability identity. If you have any questions or comments, feel free to message me in the questions tab, or reach out at @Anniekrollblog on Instagram or Facebook. Thank you for reading, and I hope to see you next week!

 

References

Albert, A. B., Jacobs, H. E., & Siperstein, G. N. (2016). Sticks, stones, and stigma: Student bystander behavior in response to hearing the word “retard.” Intellectual and Developmental Disabilities, 54(6), 391–401. https://doi.org/10.1352/1934-9556-54.6.391

Byatt, T. J., Duncan, J., Dally, K., & Beuzeville, L. de. (2021). Evolving identities of adolescents who are deaf or hard of hearing: A scoping review. American Annals of the Deaf, 166(1), 5–30. https://doi.org/10.1353/aad.2021.0008

Dwyer, P. (2022). Stigma, incommensurability, or both? pathology-first, person-first, and identity-first language and the challenges of discourse in Divided Autism Communities. Journal of Developmental & Behavioral Pediatrics, 43(2), 111–113. https://doi.org/10.1097/dbp.0000000000001054

Mueller, C. (2019). Adolescent understandings of disability labels and Social Stigma in school. International Journal of Qualitative Studies in Education, 32(3), 263–281. https://doi.org/10.1080/09518398.2019.1576940

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