Being in between, or in some ways, able-bodied and disabled. In qualitative disability research, participants described transitioning between and separating “disabled” and “able-bodied” worlds. To transition is“an integration of “physical, social, cultural and institutional elements” (Stewart et al. 2001, p.7).
Common Dialogue
All these elements can be part of creating an environment in which a person is being treated as an adult.
People have to shift, one participant phrased it as “…people still treating me as though I am not old enough and that. It could be the way I’m acting, and a lot of times it could be just my disability. A lot of people still focus on that” (Stewart et al. 2001, p.10).
“You must feel so much better!”
It was a typical response to hearing I had surgery. The surgery was never supposed to be a cure, but at the beginning, I thought it might be.
Aside from physical milestones, I worked through my resentment toward my parents for putting me through it. I’ve realized that
I didn’t feel better after it because I didn’t believe anything was wrong with me. Having a disability has always been my normal.” (Martin-Hays, 2022)
Trauma and Resilience
O’Connell got hit by a car when he was 20, and his left side is the side less affected by CP. So my strong side was hit by a car. Because of course it did. That loss, even though on paper it was harder to mourn, was tangible; I had it. Now I have to tell people about both compartment syndrome and CP.” (StyleLikeU)
In the context of scholarly research, “notions of resilience do not provide opportunities for individuals to self-define as resilient or not resilient. Authors contend that definitions of resilience are plagued by hegemonic notions of healthy, normal, or valued functioning, consistent with Western, middle-class, ableist norms (Hutcheon and Wolbring; Hutcheon and Lashewicz; Tarter and Vanyukov; Ungar (Constructionist); Young, Green, and Rogers). (Hutcheon & Wolbring, 2013)
Inspiration
Resilience or inspiration has a similar problem in this context, and in the use of the emotions attached to them. They are attached to perceptions and definitions of what enduring, surviving, and thriving appear to be. The able-bodied world assumes disability has to be overcome, and asks,
“
There’s something ironic about mourning a specific version of a disabled body and wanting it back after a change like surgery.
Change
Mourning the ability to know you can physically do things this way. It’s hard because, personally, the recovery period feels like that foot in the able-bodied side just dropped out, and now I have to work until I’m back to the same place of being in both worlds.
References
Hutcheon, Emily, and Bonnie Lashewicz. “Theorizing Resilience: Critiquing and Unbounding a Marginalizing Concept.” Disability & Society (in review).
Hutcheon, Emily, and Gregor Wolbring. “Deconstructing the Resilience Concept Using an Ableism Lens: Implications for People with Diverse Abilities.” Dilemmata 11 (2013): 235-252.
Hutcheon, E., & Wolbring, G. (2013). “Cripping” Resilience: Contributions from Disability Studies to Resilience Theory. M/C Journal, 16(5). https://doi.org/10.5204/mcj.697
Martin-Hays, O. L. (2021). Why am I more disabled sitting down? Ramapo College of New Jersey.
Martin-Hays, O. L. (2022, June 17). The simple fix. Tumblr. https://capableism.tumblr.com/post/687318757039915008/the-simple-fix
McKay, G., & Straus, J. (2015). The Oxford Handbook of Music and Disability Studies. B. Howe, S. Jenson Moulton, & N. Lerner (Eds.). Oxford Press. https://books.google.com/books?hl=en&lr=&id=3ZSFCgAAQBAJ&oi=fnd&pg=PA226&dq=crip+subculture+punk+&ots=rJ6gdAQVEB&sig=v54MO3qUFy3eefxewJ-7JrslOts#v=onepage&q=crip%20subculture%20punk&f=false
O’Connell, R. (2015). I’m special and other lies we tell ourselves. Simon & Schuster.
Stewart DA , et al. (n.d.). A qualitative study of the transition to adulthood for youth with physical disabilities. – PubMed – NCBI. National Center for Biotechnology Information.
https://www.ncbi.nlm.nih.gov/pubmed/12043171
StyleLikeU. (2014, December 14). Gay with cerebral palsy and owning it: Special’s Ryan O’Connell [Video]. YouTube. https://www.youtube.com/watch?v=T6ALMzu6TPs&t=27s
Tarter, Ralph E., and Michael Vanyukov. Re-Visiting the Validity of the Construct of Resilience. Resilience and Development: Positive Life Adaptations. Ed. Meyer Glantz and Jeannette Johnson. Springer, 1999: 85-100.
Young, Alys, Lorraine Green, and Katherine Rogers. “Resilience and Deaf Children: A Literature Review.” Deafness & Education International 10.1 (2008): 40-55