Forming a Disability Identity as a Dyslexic

NOTE: October is Learning Disabilities / Dyslexia / Attention Deficit Hyperactivity Disorder Awareness Month.

By Rachelle Johnson, a member of the Young Adult Leadership Council of the National Center for Learning Disabilities.

As a child I was diagnosed with dyslexia and attention deficit hyperactivity disorder (ADHD). Adults told me I was “differently abled” and to not categorize myself negatively, as in “disabled.” This introduced me to a societal view of “the disabled” and how to navigate an ableist society by distancing from the term disabled. The adults wanted this so I would not be treated in the negative ways people with disabilities often were.

I quickly learned how society viewed children with disabilities. I saw differences in how my “disabled versus non-disabled” peers were treated. Other kids made mean remarks because I was 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 made it hard for me to read. She responded laughing, “So you are stupid and disabled?” I tried to repeat what adults had told me: “No, I am `differently abled,’ not disabled like other disabled people,” but this explanation failed to make sense to me or the girl teasing me.

I did distance myself from disability. 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. In having this community, I was able to find joy in that part of myself that was dyslexic with ADHD. I was solid in my identity as a dyslexic with ADHD, which I knew were disabilities, but I didn’t see myself as disabled, at least not like other people with disabilities. But I knew this was incongruent.

While dyslexia can be a hidden disability and I usually passed as non-disabled, that was not always the case. When people perceived me as disabled, they interacted with me differently. When I was 16, a girl my age talked 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 I was in the same classes as her. She then changed her tone, turned red, and apologized. This wasn’t the only time I had been perceived as disabled and was infantilized, but this experience stuck with me. Why, when infantilized, did I distance myself from disability instead of questioning why any disabled person would be treated 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 people with disabilities? This was around the start of the true deconstruction of my disability identity, or lack thereof.

How could I ignore my identity as a disabled person when disabled is literally in the name “learning disabled”? 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.

Being told I was “differently abled” was to make me fit in better, but it did the opposite. As I grew older, I felt like I fit in nowhere. I was neither disabled nor non-disabled; I was learning disabled, disabled but with the qualifier of learning disabled.

It was not until I was 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 it. Was I really not “disabled” or did I see disability negatively and did not want others putting their perception of “disabled” on me? I worried I wasn’t disabled enough to call myself disabled, and that I was in some way invalidating the experiences of other people with disabilities if I identified as disabled.

I deconstructed by learning about disability from other people with disabilities, instead of people without disabilities. I read their perspectives and learned about disability history and culture. I questioned the views I held. This work radicalized the way I saw disability and myself as a person with a disability. I learned there is a diverse, expansive community of people with disabilities, 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 gained self-confidence to be myself and felt validated in my experiences. I continue to learn and grow.

I recognize my experiences as a dyslexic with ADHD are not going to be the same as all others with disabilities. I recognize a privilege in the ability to “pass” as non-disabled given the invisible nature of my disability and a privilege in having support and access needs different than other people with disabilities. But by acknowledging these differences, we can create one unified community. When those of us who are learning disabled distance ourselves from other people with disabilities, we further marginalize their community and push the idea that disability is negative and to be avoided.

When we stand together, we as people with disabilities 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 community. Today, I am dyslexic with ADHD, I am disabled, and I maintain no reservations in the pride I hold in these identities.

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  1. In 1950, when I entered first grade, it became apparent that I had some significant problem learning to read. Over those early years in school I would have my hearing and eyes tested annually. Eventually, teachers and my parents gave up trying to understand my problem. By the time I reached high school my poor academic record prompted school officials to Track me…place me in vocational classes. General Metals, Woodshop, beginning and advanced Auto Mechanics were some of my classes. I did much better in college. I majored in Art. The only course I had problems with was Freshman English. I was placed in English X, a remedial class, and flunked it twice. In my senior year of college I read an article in Time Magazine, titled: Why Johnny Can’ t Read. It was the first time I heard the term learning disability. And there I was. In graduate school, at at very prestigious university, I realized I was smart. I have had a successful and challenging career as a professional artist. I am wired differently than most people. I am a visually orientated. I can see.

  2. I was diagnosed as Dyslexic at the age of 45 . I am wondering if there is any information on Latinx communities that struggle with identifying their Dyslexia.? any resources to articles or data woul be great.

  3. I been trying to get help since 16years old. Now, 54. I feel very aggravated. But I believe, my trials, can be Gods glory. So, if there is any one who is license?
    Dyslexia, neuropsychologists, pathologists. Please, help me. I haven’t got diagnosed with it.. but I googled it and it related to some of the things that I had going on so trying to find someone who can help me with this to see if I have it and how to make it better. I am disabled, but having a hard time with being disabled are used to work, but had a hard time with it. I’m stuck in limbo and I really want to be able to figure out what’s going on with me.🙌🏼🙏🙏🙏🙏☝️

    • Hi Brenda I know exactly where your coming from I’m 54 and been just diagnosed with ADHD my I never got the help when I was younger and dad didn’t want know about it as it was a something bad being cast on his family thanks Alan

  4. This brought me to tears. I was never mocked for my dyslexia or ADD, so I didn’t have the negativity to make me question if I was disabled. I hadn’t learned they were learning disabilities until I was in high school (2012 ish). I want to go on that self-confident journey, too— to understand what my invisible disabilities mean to me. Thank you for this.

    • I will be honest, I cried while writing this blog. Gaining this self-confidence in disability identity is definitely a journey, but in the end it is a healing to embrace disability. I wish you best best as you yourself take on this journey of disability identity

  5. Wonderful, thoughtful, and informative message. I can attest to the emotional trauma caused by keeping my own dyslexia/ADD a secret since diagnosed in 1972 (2nd grade). In the past 8-10 yrs. reading the first-hand life accounts of so many making a life for themselves despite dyslexia, or others of my generation in particular who remained marginalized has had a profound impact on my life and how I view myself today. Thank you.

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