As a young adult with a visible disability and a very visible wheelchair, I am always walking the line (har har) between wanting to be an advocate and role model and wanting to ignore my disability and just enjoy my life. On one hand, advocacy is so important for community morale and for raising funds for research. On the other hand, sometimes I just want to sit in Starbucks and drink my pumpkin spice latte in peace. So I often wonder, as people with various disabilities, are we just props, tools used to validate the masses? Or am I allowed to just be a person?
I was diagnosed with Friedreich’s ataxia when I was 9 years old. The condition is neurological and progressive, and I was using a wheelchair at the age of 18. It almost directly corresponded with the beginning of college, so I had a serious crash course in disability studies. I realized the wheelchair is usually seen first, and the person often gets overlooked.
I went to a wedding recently. The couple was lovely, the food was delicious and there was an open bar. The venue had a few issues with accessibility, but overall it was a very nice wedding. The wedding was for a coworker of my boyfriend, so I didn’t really know anybody that well, so I stayed to myself, which is fine. Near the end of the night, as my boyfriend was finishing up conversations with his coworkers, I was sitting at our table eating cake and checking out social media on my phone. Maybe this is not very social, but it was late and I was out of spoons already. I was ready to go home and go to bed.
As I browsed Facebook, a person whom I did not know in the least came up to me, sat down, and started telling me about her history with cancer. These conversations are pretty awkward, but I tried to be polite at first. She was obviously comparing our disability experiences and many of us don’t that. It’s like having someone come up to you and say “I broke my leg once, so I understand what it’s like to be in a wheelchair.” Even people with the same disability have very different experiences. I don’t know what it is like to have cancer. I don’t know what it’s like to break my leg. But I know what it’s like to have a permanent, progressive disability that affects my entire body. I know what it’s like to be in a wheelchair all the time.
Like I said, I tried to be polite to this woman. I think I did well, for a while. However:
My disability isn’t a trivia question.
After she finished telling me about her history with cancer and other things, she said to me “I told you what I have, now you tell me what you have.” There is not much to say about this; if you don’t understand why it’s a problem to say this, I don’t know how to help you. This is the most personal, potentially embarrassing question you could ever ask somebody. Because you don’t know. Not everybody with a disability is comfortable talking about the specifics of their condition. And they shouldn’t have to be. Discussing your disability should be 100 percent voluntary. Just like she told me about her health history, I should be allowed to volunteer the information or keep it to myself. A person with a disability doesn’t exist to satiate your curiosity. Whether or not I want to discuss my disability is up to me. And no, I don’t really want to talk about it with a stranger at a wedding.
Don’t undermine me.
This woman continued to talk to me about everything for a while. It was interesting that she was so eager to know about my disability, but she got totally annoyed at me when I couldn’t hear her. We were in a loud room, and not being able to hear in crowds is a big part of my condition. Honestly, it’s probably my biggest obstacle. But she wanted to know about these personal details of my life and then couldn’t handle the specifics.
This was about time she asked me to accompany her to the dance floor. Now, I will dance in places and with people with whom I feel comfortable. But I did not want to dance at this wedding. It was not negative, I was just fine not dancing. But this woman would not let it go. I guess “no” wasn’t clear enough, and when I finally came up with some excuse, she is just brushed it off and actually turned and asked my boyfriend for permission to take me on the dance floor. I think he mumbled “Uh, OK” (in his defense, he had not been part of the conversation and had no idea what was going on). She literally grabbed the handles of my wheelchair and pushed me to the dance floor. I just don’t understand. It was like this woman wanted to validate my disability, but in the same breath, asked somebody else for permission instead of listening to me. And she grabbed my wheelchair! Isn’t that kidnapping?
I’m not a circus act.
After this next incident, I left the wedding. It’s unfortunate that one person’s actions can really ruin an activity, but when you have a disability one comment is all it takes. A person with a disability is just that, a person. My disability does not exist to entertain you. Making a person in a wheelchair dance isn’t funny. That’s what this woman did. If I’m in a place with my friends and people I know, dancing with you might be fun. But dancing with this lady was not fun. And it all came crashing down when she decided to sit on my lap and basically give me a lap dance. If I wasn’t in a wheelchair, this would have been considered sexual harassment. But because I am disabled it was seen as silly; it was like trying to make the poor, disabled girl feel ”normal” out there with people. Really, I have never felt worse.
Let’s also address the fact that sitting on a person with a disability is a really bad idea. You don’t know if they have an ostomy bag, or brittle bones. My friends sat in my lap sometimes, but they know me and they know I can feel and I will tell them to get off if they need to. But if you don’t know, you could seriously injure somebody.
As a person with a rare disability, I am trying to find how I fit into social situations. I’m usually OK with answering disability-related questions; I want to spread awareness, but it seems like one answer invites endless invasiveness. Am I a tool that exists simply to educate? Or can I say “no” without being the bitter disabled lady? Can’t I just be Mary sometimes and look at puppy pictures on Instagram?
Note: I realize this was an extreme situation and people are often just curious and making small talk. When this happens to you a lot, you can generally tell who is being legitimate and who is being nosey. This woman was both nosey and lit like a Christmas tree.
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Getty image by Tirachard.