October 6th, 2021

Forming a Disability Identity as a Dyslexic

Is the learning disability of dyslexia, a disability? Well, of course, disability is right there in the name. But for much of my life, this was not a simple question to answer. If you had asked me at 10 if I, a dyslexic with ADHD, was disabled, I would have struggled to answer. I would have told you yes, dyslexia is listed as a disability in the DSM and is covered as a disability under IDEA and ADA. I was even in special education for my dyslexia. But did I personally identify as disabled? The question of whether a person is disabled can be complex. For many, a diagnosis does not automatically lead to identifying as disabled. Instead, disability can be a chosen identity.

Diagnosed with dyslexia and ADHD, adults growing up told me I should not identify as disabled. I was told I was “differently abled” and to not categorize myself negatively (as in disabled). What was happening was I was being introduced to the societal views of the disabled and their perceptions of how to navigate this ableist society: by distancing myself from the term disabled. They wanted this so I would not be treated in the negative ways the disabled were. 

I quickly learned how society viewed the disabled. I saw differences in how my disabled versus non-disabled peers were treated. I remember kids making mean remarks because I got pulled out of the room for reading instruction and for the way I read, for which I was embarrassed. I remember a girl teasingly asked: “why can’t you read?” I explained I had dyslexia, a learning disability that makes it hard for me to read. She responded laughing, “so you are stupid and disabled?” I did not know how to respond. I tried to repeat what adults had told me, explaining I was not disabled. “No, I am `differently abled,’ not disabled like other disabled people,” but this explanation failed to make sense to me or this girl teasing me.

Slowly, I learned to distance myself from disability. I was solid in my identity as a dyslexic with ADHD, which I knew were disabilities, but I was not disabled, at least not like other disabled people. But I knew this was incongruent. I knew I was disabled. How could I ignore my identity as a disabled person when disabled is literally in the name learning disabled? The point of this was to make me fit in better, but it did the opposite. Instead, I felt like I fit in nowhere. I was neither disabled nor non-disabled; I was learning disabled, disabled with the qualifier of learning disabled. But I am thankful that I grew up with other learning disabled peers—the one space where I did fit in. This played a big part in maintaining my positive identity of being learning disabled. I may not have had a positive disability identity, but I had a community where I felt I belonged. In having this community, I was able to find joy in that part of myself that was dyslexic with ADHD. And this community continues to be important to my sense of self.

However, there were times where I could not avoid disability. I was inherently surrounded by and categorized with the disabled, whether I identified as disabled or not. While dyslexia is mainly a hidden disability and I usually passed as non-disabled, that was not always the case. When people perceived me as disabled, there was a noticeable difference in the way they interacted with me. I will always remember at 16 a girl my age walked up to me and started talking to me in a baby voice: raising her pitch, elongating her sounds, and lowering her vocabulary. This confused me before realizing she had perceived me as disabled and was thus infantilizing me. My knee-jerk reaction was to distance myself from disability and remind her that I was taking the same classes as her. She immediately changed her tone, turned red, and apologized. This was not the only time I had been perceived as disabled and as a result infantilized, but this experience stuck with me. I was unable to avoid the question of where I fit in with disability. Why, when infantilized, did I distance myself from disability instead of questioning why any disabled people were being treated in this way? Additionally, if she had been so embarrassed to treat a non-disabled person in that way, why did she think it was okay to do this to disabled people? This was around the start of the true deconstruction of my internalized ableism.

It was not until 18, 11 years into being diagnosed with dyslexia and ADHD, that I would identify as disabled without hesitation. To get there I had to deconstruct how I saw disability and how I saw myself within disability. I had to piece out if I really was not “disabled” or if I just saw disability negatively and did not want others putting their perception of “disabled” on me. I deconstructed by learning from the actually disabled community. I read on disability from disabled perspectives. I learned about disability history and culture. I questioned the views I held. This work radicalized the way I saw disability and myself as a disabled person. I learned there is an expansive disabled community, one with history and belonging. Disability is neither fully positive nor negative, but dynamic. I grew to self-identify as disabled with pride. In doing so, I have gained self-confidence in showing up as myself, felt validated in my experiences, and continue to learn and grow.

The disabled community is diverse. There was a time while I deconstructed where I worried I was not disabled enough to call myself disabled, and that I was in some way invalidating the experiences of other disabled people by identifying as disabled. However, I can recognize my experiences as a dyslexic with ADHD are not going to be the same as all others in the disabled community. I can recognize the privilege in my ability to “pass” as non-disabled given the invisible nature of my disability. Additionally, the privilege I hold in having different support and access needs as compared to other disabled people. However, by recognizing these differences, we can create one unified disability community. There is little reason for us learning disabled people to distance ourselves from the disabled community. When we as learning disabled people distance ourselves from the disabled, we further marginalize the disabled community and push the idea that disability is negative and to be avoided.

When we stand together, we as disabled people make up a large part of the population. Yes, we can further categorize ourselves into our specific disabilities, but we must also come together as a disability community. Despite disability being in the name learning disability, it took me longer than it should have to get to this point. Today, I am dyslexic with ADHD, I am disabled, and I maintain no reservations in the pride I hold in these identities.

This blog was written by Rachelle Johnson, one of NCLD’s Young Adult Leadership Council members.

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