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Throughout my life, it has been impossible for me to ignore my disability. People I talk to look like they have two heads due to my eyes’ inability to fuse. Any vista in front of me is blurry. Little floaters decorate my field of vision.
But while I learned to adapt to my visual impairment, it took me much longer to embrace my identity as a person with a disability.
When I was born, the nurses immediately clutched me out of my mother’s arms upon seeing my eyes. Deep, smoky clouds permeated both of my corneas.
Doctors conducted tests and referred us to eye specialists. Over the next few years, I underwent many surgeries and was diagnosed with Axenfeld-Rieger Syndrome, a congenital eye disorder.
In addition to being visually impaired, I was told that I have a 50% chance of developing glaucoma, an eye disease and that this disorder can be associated with other health issues. I would also have to wear a patch over my right eye for hours every day to ensure my left eye did not go blind.
Upon starting school, my disorder impacted not only how I saw, but also how I was seen.
As my peers sprinted around the school courtyard, I worried that they pitied me for silently sitting alone on the semi-circle-shaped bench. I wanted to be chosen for teams for freeze tag, but no elementary school student seemed to want a kid with blurry vision. My disorder made me feel inferior. I did not want to draw even more attention to my disability, so I never asked teachers for the help I needed. For example, I could make out what was written on the board from the front row of my elementary school classrooms, but as I neared the back, all I could see were blurry blobs of ink. I frequently zoned out and did not understand even simple assignments.
I have had an Individualized Education Program, or IEP, since I was 3, giving me support outside my many doctors’ and visual therapy appointments. At first, my IEP included a paraprofessional, who kept me from the playground for fear I would get injured, and an occupational therapist who helped address the low muscle tone that prevented me from walking until I was 19 months old.
I was taken out of class several times a day to receive dilating eye drops in the hopes they would improve my vision. While I no longer have those accommodations, I still have a vision instructor who advocates on my behalf at school. Whenever I struggle visually in class, I can ask for additional support or for my vision instructor to communicate with my teachers. This person, for example, has supplied me with a dome magnifying glass — something I have come to rely on — and acts as an ongoing support system.
My IEP provided extra help. But it could not stop the ubiquitous commentary about my patch. After removing it once I had reached my daily quota of hours, kids and teachers stared at me as if I had done something wrong, or they would comment about how I needed to listen to my doctors. I felt like they could not see past my patch.
In fourth grade, I got the exciting news that I no longer needed to wear a patch. I thought that everything would change, but I still did not have the 20/20 vision I fantasized about and had to face the daily struggles of living in a blurry world.
When I wore my patch, it was obvious that there was something abnormal about my eyes. People who approached me noticed a patch before they knew who I was and what I was like. But when I stopped wearing my patch, others did not necessarily know about my disability. Even if others did not judge me, I judged myself. The zebra-striped, polka-dotted, or colorful patches physically covered my right eye and blocked me from seeing half the world. But they also stopped me from seeing myself as “normal.” Why did I define myself by my disability?
Perhaps no one chose me for tag because they could not see me on the distant bench I opted to sit at. Perhaps all the patch commentary was because people cared about my visual health. Perhaps my refusal to seek help only made me struggle more. Why did I believe that nothing could change, socially or academically?
Once I began to realize that having a disability did not define me, I could finally come to terms with it. I learned to speak with teachers about getting a front-row seat and to start seeing myself as an equal to my peers.
While it is still anxiety-inducing to put myself out there and ask for help, I have understood that I need certain accommodations to be able to integrate myself into an ableist society.
Yes, there are moments when people have not offered me the help I need. There was one awful time when a teacher teased me about my request to move the front row by asking me “how many fingers” he was holding up when he was holding a pencil. On numerous occasions peers have questioned my need for accommodations, implying that I am getting an unfair advantage.
I will always need some assistance in order to fully achieve my academic goals, but that does not make my achievements any less valuable. Voices are powerful things, and everyone who has struggles should learn to use them without feeling guilt or shame. Other people’s ignorance or active disrespect should not deter anyone from asking for help. It no longer deters me. And I now know that it is OK to label yourself as disabled even if others face greater and more visible challenges.
I am a proud member of the disabled community and will continue to be for the rest of my life.
Ava Stryker-Robbins is a junior at the Beacon School in New York City. She is the head of design at her school’s literary magazine, writes a weekly food column for The West Side Rag, interns for the City Limits Accountability Reporting Initiative for Youth, and takes part in the New York Civil Liberties Union’s Teen Activist Project. In her free time, Ava loves to play classical guitar and knit.
Chalkbeat is a nonprofit news site covering educational change in public schools.