October 4th, 2022

Understanding and Navigating Through Life with a Disability

By Eliza Young

Disability is a broad term that may seem hard to define. Obviously, there are medical definitions and legal definitions, but what matters to me is how my disabled community defines disability. Who can be included in the disabled community? What unites all disabled people? The answer, like most communities, is a set of shared experiences. Disabled people, for all our differences, all have experiences navigating a world constructed for people that are not like us. Disability is just a difference. It is the way someone’s brain or body works, a difference, that leads them to have a unique experience much differently than someone who doesn’t have that disability.

Not everyone with a disability identifies as disabled, which is ok. But I wanted to share here what led me to realize I am disabled and why it is okay – and even empowering – to identify as disabled.
One of the things I remember most vividly about elementary school is struggling to learn to read. While most people don’t remember learning to read, it was a daily struggle I faced for years. I recall the moment I realized I was different. I was in first grade; the class was working on a worksheet about words and letters that I couldn’t pay attention to. Every couple of minutes, I would get up to ask my teacher, “how long until lunch.” She became increasingly annoyed with my interruptions and finally snapped at me to “learn to read the clock.” I slunk back to my seat and noticed that I was the only kid not working diligently on my worksheet. I wondered how they were all able to pay attention and felt confused and alienated by this thing that everyone else seemed to be able to do effortlessly, that I couldn’t seem to do, no matter how hard I tried.

That memory sticks with me because it is the first instance of a feeling that I would come to know well, the frustration of trying as hard as you possibly can and still failing. It was only later that I learned that my eyes couldn’t focus on a close object for more than 9 seconds at a time. In other words, every 9 seconds, the page would split into two images, and my eyes struggled to bring them back into focus. This condition, called convergence insufficiency, is why I had so much trouble concentrating and reading. A couple of months after I first realized that there was something different about me compared to my classmates, I was formally diagnosed by a doctor. My parents and the doctor explained that the way I was experiencing the world was not the way everyone else experiences it, a pretty profound concept for a 6-year-old to wrap their head around. I had to learn early on that I couldn’t trust what I saw and understand that other people’s visions didn’t split into two images. I hadn’t realized I was seeing the world differently than everyone else.
My experience is not universal, but it shows that even though kids are young, they can figure out that they are different and feel alienated and strange because of it. Being diagnosed gave a name for my experience, demystified it, and provided steps to improve my situation. The diagnosis and label of “different” are not what made me feel different; I already felt that way. It is important to help kids understand what is happening and why they have different experiences from their classmates.

I was pulled out of the classroom throughout elementary school because I was reading a grade level behind. By the time I was in 5th grade, I had understood that I had a learning disability and that I had difficulties with reading that other people didn’t. I understood why I was pulled out of the classroom for tests and began to look forward to being placed in a distraction-free environment. Having that name of “learning disability” for my experience also helped when one of my best friends told me I “wasn’t smart enough to get into the gifted and talented program.” Although that hurt, knowing about my LD helped me fight the fear that I wasn’t smart by knowing that there was a reason I had trouble in school.
Despite recognizing my learning disability, I still had trouble seeing myself as disabled. One reservation I had was that identifying as disabled would somehow take away from people with “real” disabilities. I didn’t want to take any resources from people with more intense disabilities and didn’t want to claim an identity that wasn’t meant for me.

While grappling with this in high school, I faced discrimination from my school’s guidance counselor. I had registered for a regular history course but wanted to change to an AP history course because it seemed more engaging and intellectually stimulating. I talked to my guidance counselor about changing classes in June, and it wasn’t until November, a quarter of the way through the course, that I was finally permitted to switch into the class. For six months, she blocked my request to change classes because she thought I could not handle the upper-level class. She decided for me that I was not capable rather than letting me decide for myself and, in the process, set me up to fail. Because she chose to stonewall my efforts to switch classes, I was two months behind everyone else in AP history when I joined and had to work twice as hard to get a decent final grade.

Experiencing discrimination from a woman who was supposed to be part of my support system crystalized for me that not only are bureaucratic systems not set up for students like me but also individuals within the education system routinely underestimate students with disabilities. This effectively takes away our agency and ability to achieve our goals. Obviously, some realities that students with disabilities live with cannot be changed, even with all the motivation and agency in the world. For instance, I am never going to read at an average reading speed; my eyes just physically cannot move that fast. But that doesn’t mean I can’t read textbooks and succeed in school. I can do just as well as my classmates when given the proper support and accommodations. It is a matter of getting me the resources to be able to succeed and giving me the support I need rather than forcing me to lower my expectations of what I can achieve. Level the playing field, don’t lower the bar.

Experiencing discrimination for the first (unfortunately not the last) time was one of the factors that really made me understand that my disability was not just an inconvenience but a truth that impacted every aspect of my life. It is not an internal psychological and emotional issue; it is a physiological issue that affects how I interact with the world and changes how people treat me.

After that incident, I realized that I don’t have to be “disabled enough” to claim my identity as a disabled person. What I slowly came to realize is that comparing disabilities is not helpful or necessary. No two disabled people have the same experience with being disabled, and thus no two disabled people are equally disabled; comparing disabilities doesn’t get anyone anywhere. One thing I wish I could tell my younger self is that the disability community overall is very accepting of people who identify as disabled. As a community, we don’t question if someone identifies as disabled since many disabilities are invisible, and people can have different experiences and still be disabled.

The process of realizing I had a disability empowered me and gave me a way to understand and frame the experiences I was having. And the absolute best part of claiming my disabled identity was being connected to a community of other disabled people. The disability community is big and welcoming, and extremely supportive. It made me feel less alone in what I was going through and able to connect with others who had similar perspectives.

Disability is not a dirty or degrading word. It is not something to be shied away from or euphemized with “special needs,” “challenged,” or “differently abled.” It is an identity that has meaning both in connecting to a community and in legal protections. Children know they are different, so pretending otherwise and teaching them that disability is a bad or shameful word will only hurt them in the long term. Instead, teaching them acceptance and strategies that work for them will give them the tools they need to succeed. So, to people with disabilities out there, you are allowed to identify as disabled, and to parents and teachers, teach your kids that disability is just a normal part of life, not something to be ashamed of. Disability is part of who I am, and rather than limiting my potential, it expands my world.

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