I'm an 'Angry Disabled Girl' Sometimes, and That's OK


When my mitochondrial disease started progressing rapidly and I dove feet first into the category of “Disabled Girl” and “Wheelchair User,” I wanted to stay the same person and not be changed heavily by my disability. All me, just now in a wheelchair.

Part of what fueled my stubbornness was that it seemed like the people with disabilities I knew were always angry.

Angry at doctors.

Angry at able-bodied people.

Angry at their environment.

Angry at society.

I saw this anger and to me it looked so ugly. I wanted so much to be “above” that anger. While some people were hitting people with their canes and “running over” people with their wheelchairs, I would educate people about mitochondrial disease. While some were snapping at able-bodied people for saying the phrase “wheelchair bound,” I was going to tell everyone that without my wheelchair I would be bed bound. But as you can imagine, things are not that simple.

One Monday changed my perspective. It started with me calling an Uber to my apartment. When the driver got there, he kept yelling “The door is open!” I eventually transferred into the back and asked him nicely to put the frame of the chair into the back. He then went on, saying he didn’t have to help me and that most “wheelchair bound” people take paratransit. After a minute or two he did put my frame in the trunk. But of course he didn’t stop there, he had to mention that when he picked me up that he didn’t know I was in a wheelchair; he just thought I was short. Only last week I had two Uber drivers cancel on me on the same day. And if you think this problem is confined to Uber, I’ve had paratransit drivers say I have “too many problems” to ride and that I’m “too much of a liability.” Every time I leave my house I take a gamble.

I was supposed to take a wheelchair accessible taxi to my college on Tuesday so I could go to class in my electric wheelchair, but they sent a standard cab instead, with the excuse that they only have a limited number of accessible vehicles and I should have called two days ahead. Never mind the fact I tried to confirm the wheelchair taxi many times. It’s just my luck my doctor admitted me to the hospital a couple hours later anyway — at least I don’t have to worry about the ambulance being accessible.

So what does this have to do with my anger? This stuff happens to me every day. And while I don’t care about every little thing, these daily hassles build, especially when you have as little energy as I do. And with little energy comes little energy to respond to discrimination.

Take for instance this woman in my building — let’s call her Linda. She loves to come out of nowhere and “help” me. She does stuff like opening the door in a way that doesn’t let me get through, and offering constant inspirational advice. Linda can’t believe I can open the door to my apartment. Linda wants to congratulate me on pressing the button to close the elevator door. Linda would like me to to know it’s so nice that the doctors “let me out in the world.” No joke, she actually said that.

When I leave for physical therapy, Linda is there at the front door. When I go to class, Linda is there in the elevator. When I’m watching Trump win the New York primaries, Linda is there to tell me I’m so pretty for a girl in my condition.

The first couple times I nodded and said I have to go; the rest of the time, I tried to ignore her. But one special day when she came up to me, I couldn’t hold it in.

The same day I had to deal with someone parked in front of the sidewalk so I couldn’t leave my building.

The same day I had to deal with the Uber who quit once he saw I’m a wheelchair user.

The same day I had to wait two hours to pick up a single written prescription.

The same day I had to army crawl to get under the door in the wheelchair accessible stall at Hopkins, the #1 hospital in the US.

When I got home on that day, when she told me “good job” as I got my mail, I did not hesitate to tell her how rude she was being. I told her she was talking to me as if I was a toddler, and that wasn’t OK. She did not take kindly to this. It was as if I questioned her entire worldview, which in a way I had.

In that moment I realized I had become what I tried so hard to avoid. I was that Angry Disabled Girl.

But I wasn’t one by some malicious choice or attitude. Our lives as severely ill and disabled young adults are so much harder than those of our peers. Even the smallest things can turn into an ordeal, and those ordeals accumulate when you are running on poor sleep, fatigue, and lots of pain. Could I have been nicer to her specifically? Definitely, but that moment of anger was the wake up call.

I don’t think anger is necessarily a bad thing, as long as we take that anger and put it into social change to make our local communities better. You can make a difference in your town or your city. At the very least, you can share your anger and struggle to inspire others to fight for accessibility.

I truly believe most ableism and inaccessibility comes from ignorance. At least with anger our voices are heard and noticed. As long as I learn to direct my anger at problems and inaccessibility and not at people, I don’t think I mind being an Angry Disabled Girl, at least every once in a while.

 


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