What I Wish Non-Disabled People Knew About Living With a Disability
collage of girl with the thought “what i wish non-disabled people knew about living with a disability”
When I was born, my doctors thought I was blind. Soon after, they determined that I was not fully blind, but rather had a visual disability called congenital nystagmus.
Essentially, having congenital nystagmus means that I have hyperactive optic nerves. My eyes constantly shake, noticeably so. The result of this shaking is that I cannot visually focus on any object. While my world is not constantly in motion, I most definitely cannot see the bird you’re trying to point out while yelling, “Look! Don’t you see it??” I cannot ride a bike. I will never drive a car. Graph paper gives me a headache. It is literally impossible for me to use a scantron. I have a null point that requires me to tilt my head back to see, and as a result, I have neck pain most of the time. The list goes on.
If you’re like most people, you probably read the previous paragraph and felt a little bit of sadness. That’s normal. But in honor of Disability Pride Month, I’m here to spill some truth on what it’s like to live with a disability.
picture of author (soleil) as a child
For most disabled people, their disability is not a constant thought. Truth be told, I’m only ever made conscious of my disability when someone explicitly points it out to me when they ask why my eyes are shaking, why I can’t drive, or why I can’t see something they’re trying to point out. While it’s hard to not wish I could drive or ride a bike, these are not constant thoughts for me, nor things that really evoke sadness at all. They are simply facts of my life. When people assume that we are constantly upset over our disabilities and wish we were fully-abled, they essentially assert that there is something wrong with being disabled, something that should be regretted and fixed if possible. This way of thinking is intrinsically ableist and quite frankly just rude and annoying.
That being said, if a disabled person asks you for help, don’t complain about it. Please. We are not trying to be proactively needy. We do not enjoy asking for help. It just so happens that sometimes we have to. If we do not ask for help, do not assume we need it. We are disabled, not unable.
Furthermore, never fetishize disability. I have had numerous men tell me they like how I need their help, that it’s cute my eyes shake, that they’re attracted to me because I’m disabled. I cannot even begin to describe how unsettling this is. My visual disability is something I have struggled with my entire life, it is an important part of my identity. However, you should never like a disabled person solely for their disability. You should like them for who they are as a person while respectfully acknowledging that their disability may play a part in that.
I actually met one of my best friends in college because we ended up regularly sitting next to each other in calculus class. More often than not, I was unable to see the board, so I began asking him for help. He would tell me what was on the board or show me his notes so I could see the material more easily. He never complained about it, never made me feel guilty or lesser. One day, he politely asked why I couldn’t see the board. I explained my condition, and that was the end of the conversation. He never once made an insensitive joke about it, never acted in a patronizing way, and quite frankly never treated me as inferior because of my condition. This is the proper response. Please take note. And to that friend, if he’s reading this right now, thank you.
picture of author (soleil) as a child on a theme park ride
The biggest truth I have to offer is that the hardest part of being disabled is not my disability, but the way others treat me. I grew up being bullied for my condition. Kids would tell me my eyes were “scary,” “crazy looking,” or “weird.” One girl even went so far as to ask me not to look at her because it scared her, much to her friends’ amusement. Kids would tilt their heads back to mimic my null point in mockery. One of my best friends from elementary school has the same condition as me. I remember one day, another girl told her to not tilt her head and physically grabbed her head to move it back upright. To this day, adults will ask about my condition and respond with, “That sucks,” or “That’s so weird.” It is these responses that in my life have composed the majority of the difficulties I face. Because of my disability, I receive accommodations in college that allow me extra time on tests. One time on a math test, I needed to use the extra time because there was quite a bit of intricate graphing which was very difficult for my eyes. My teacher took me back to his office where another teacher was working. The other teacher laughed, rolled his eyes, and said, “She really needs more time? What you gave her wasn’t enough?” I wanted to run away and cry and take whatever grade I would get on my unfinished test. I was so embarrassed, so hurt that another teacher would assume that I was “making up” the realities of my condition. It is annoying to not be able to drive. But it hurts more to be judged and perceived as lesser by others.
I feel like something that is not talked about enough is how disabilities can positively shape our lives. Our disabilities make us unique. They make us who we are and bring a beautiful variety of diverse experiences to the world. Without my disability, I might not be a musician or a writer; quite frankly I might not be myself. Our disabilities are not hindrances, they are part of us and part of our story. They are something to be proud of and to embrace, to appreciate in society as a whole. With that being said, Happy Disability Pride Month!