I’m waiting in line to get on the ride. I’ve been on this type of ride many times before. “I’m older now.” I tell myself. I’m more excited than ever to get on the ride. It’s a slightly new variation of a ride I’ve been on as a teen, as a child, but this type of ride doesn’t scare me as much as it used to. I’m used to the motions. The twists. The turns. The ups. The downs. And yet. I’m still scared. And while I get on the ride with other people who have been on the same ride time and time again, I still feel alone. Only I know what it feels like to be me going through the motions of the ride.
This is what being disabled has felt like to me for the past year, but especially over the past few months. Unlike the metaphor of the carnival ride, I cannot choose to stop being disabled – which is fine. I have found a sense of pride in being disabled; in finding community with other disabled people; in realizing my creativity in doing some things different to get similar results as nondisabled people. This is the best part of the disability carnival: the disability community and the pride in identifying as one if its members.
When I discovered the powerful and active disabled community last summer on social media, I had more pride than ever in being disabled. I realized that I could be proud of myself as I am; I am worthy as a disabled person not despite being disabled. While I know this to still be true, the last year has been exhausting because of complications with my disabilities. While I know I’m on several different rides that other people are on, I still feel alone because only I can experience what it feels like to be me.
Most recently, I have chosen to begin vision therapy to decrease eye strain in both my eyes, and to hopefully get some 3D perception for the first time in my life. The feelings I have about starting vision therapy are especially analogous to going on a familiar carnival ride. When I was young, I didn’t want anything to do with the eye doctor. By the time I was five and a half, I had three eye surgeries to align my eyes. I feared going to the eye doctor and anything coming near my eyes. Starting in 7th grade, they prescribed a new glasses prescription every time, but I refused to believe there was anything wrong with my eyes. I rarely wore my glasses. I simply did not want to go on the ride towards better vision.
Flashforward to the summer after my freshman year of college, when I first noticed my left eye turning out. Both the optometrist and ophthalmologist said there was nothing they could do about it. I should just be happy my vision was as good as it was considering my surgical history. This time, I wanted to go on the ride towards better vision and they refused to let me on. I was angry. I cried. I hated my body. All I wanted was perfectly aligned eyes.
Now that I’m older, I know my vision is terrible. It’s not even the poor alignment anymore; it’s more my eyes’ lack of ability to focus, especially together that concerns me. I can’t wait to get on the ride towards better vision, especially since the last time I waited in line to get on, the doctors wouldn’t let me. My eyes can only focus on something for a few seconds before the object starts to go blurry -even with glasses on. I have bad depth perception. My eyes truly refuse to work together to fuse one image. My right eye likes to take over and my left eye is happy doing its own thing. Therefore, this time, after I’ve been forced on the ride to better vision many times when I was a kid, and I wasn’t allowed on the ride the last time I tried to get on, I am excited to experience the motions of the ride. I can’t wait to see how the therapy will improve the way I see the world. And yet, I still feel that small sense of familiar anxiety before getting on a carnival ride. I’ve been here before. I’ve had hope that somehow one of my disabilities or disorders would just magically be treated after just a little effort, and nothing. No results. And so, the internalized ableism ride turns back on: My brain is just too damaged for improvement. I mean they gave me the warnings of the dangers of getting on the ride in the first place:
- “You will never achieve perfect binocular vision.”
- “We’re not sure if you will be able to have 3D vision.”
- “Because of your surgical history, your prognosis isn’t as good as those who haven’t had surgery.”
- “With your CP, your muscle tone in your left eye could just be different and prevent it from being able to get stronger.”
- “You will need at least a year or more of vision therapy.”
These warnings turn over and over in my head. Am I making a huge mistake? Am I jumping on this ride too quickly? Am I going to want to stay on the entire time? Am I just wasting my money? This is not a popular ride; how do I know it will be worth it? Am I just choosing to do this because of my internalized ableism?
The disability carnival comes back to the deepest and darkest ride of internalized ableism which is always there waiting for its next victim.
Over the past year I’ve had more doctors’ appointments than I can count. 6 weeks of PT for my IT band in my left leg. Podiatrist appointment for my bunion (and now arthritis) in my right toe. Doctor’s appointment for anxiety. Meds checks for my anxiety medication. Doctor’s appointment for heart palpitations – likely linked to anxiety. Dental procedures. Now multiple eye doctor visits and soon vision therapy appointments. Each of my different conditions is a slightly different ride with different emotions, experiences, and fellow riders, but they are all in the disability carnival. Each time I make an appointment or I’m sitting in the waiting room at a doctor’s office, I am pulled back onto the internalized ableism ride. Am I really in that much pain? Is it really anxiety, or is it just stress? Do I really need to get this checked out? Am I going to another doctor’s appointment because I just want attention? Why does my body have to have so many issues already? I am so tired of there always being something wrong with me.
For much of the past year, I’ve been jumping off the internalized ableism ride before it ends. I force myself to stop thinking those thoughts. Stop throwing myself a pity party over being disabled. I tell myself I can’t be mad or upset because it’s ableism that’s the problem, not my disabilities. But over the past month, I’ve been trying to let myself stay on the ride and allow myself to work through the feelings I have towards my disabilities. I am trying to allow myself to be angry at the fact that my body doesn’t move or feel the way it’s meant to while also acknowledging that that doesn’t mean I can’t also have pride in my body and myself for what my body can do and has done.
As I take this leap onto the vision therapy ride that I never would have imagined going on just five years ago, I am reminding myself to be patient. With myself. My body. My brain. My eyes. With the process. Since I know I’m looking at a year or more of weekly therapy, I’m trying to remind myself to take it one session and one day at a time. Results are going to be slow, but if I commit myself to this project and am consistent then I will eventually see the results I’m hoping to achieve.
“It’s difficult to spend time in any carnival or amusement park and not realize that a repressed fear of death may be the one emotion that is constant in the human heart even if, most of the time, it is confined to the unconscious as we go about our business. Thrill rides offer us a chance to acknowledge our ever-present dread, to release the tension that arises from repression of it, and to subtly delude ourselves with the illusion of invulnerability that surviving the Big Drop can provide.”
― Dean Koontz, Saint Odd
a-symmetry 