Guest Editorial Week of 2/3/20

How to help those with disabilities? Listen to them

I’m 39. I have lived most of my life with a disability.
I’m not sure when it truly started — probably early childhood, but it got severe when I started high school. I began having migraines every day, and the root cause of my migraines was a mental health issue.
One of the hardest parts of having a disability is dealing with other people. There’s the actual problem itself — that I can’t do certain things and my head hurts all the time — and then there’s the extra problem of other people having no idea how to deal with a person with a disability.
Some people take sympathy to an extreme. They act as if I am breakable and ask if everything is OK, even when I assure them that entire categories of things are always OK for me. I’ll tell them that natural light is always fine for me, and they’ll keep asking if the light from the window is giving me a headache.
When I explained my needs to one person, she began “awww”ing like she was talking to a baby, or a dying person, or a dog. Or maybe a dying baby dog. I’m still an adult, and I’m not stupid. I’m just disabled.
Some people think that I have a disability in order to inconvenience them. And, yeah, it’s inconvenient. Trust me, it’s a lot worse for me than it is for you, and I hate inconveniencing others. I hate asking for special accommodations, even the ones people with disabilities are entitled to by law.
A few even asked me, “If you could get better, would you want to?” Uhh, let me think. No, I enjoy my head hurting every day.
Some people deal with the problem by pretending it does not exist. Or they want to explain to me why it’s not good that I have the problems I have, as if I’m not aware. Some people think it’s my fault. Some suggest I go to the doctor (as if I haven’t) or try simple cures that don’t work (like Advil).
For the record, I’m well aware that my disability is inconvenient and it limits my life.
I am doing my best. I have a lot of experience living with this problem, and loads of detailed knowledge about what caused it, how it affects me, and how to handle it. The best way to deal with it is by asking me and listening to me and working with me to find mutually acceptable solutions.
I’m already doing everything that can be done to get better. I don’t need suggestions for other cures. I’ve probably already tried them. And it’s not helpful to tell me my mental health problems are irrational. If it were rational, it wouldn’t be called mental illness.
My mental health problems are very sensitive to my trust, communication, and relationships
with other people. If someone isn’t listening to me, or if I feel I can’t trust them, my behavior gets weirder and worse. Then it becomes a bad feedback loop in which they are reacting to me, and I am reacting to them. If you’re worried about my symptoms affecting you, remember that you can also affect them.
If you know someone with a disability, the best thing you can do is listen to them. Let them tell you about their strengths, and weaknesses, and needs. Be present. Empathize. Don’t scold them for their problems or try to explain why they’ll have to suck it up.
Assume they are already doing everything in their power to get better or improve their ability to function. And remember that an inability to do certain things doesn’t translate to an inability to do all things.
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OtherWords columnist Jill Richardson is pursuing a PhD in sociology at the University of Wisconsin-Madison. Distributed by OtherWords.org.