Posted in Developmental disability, disability rights, Self-advocacy

When I suddenly can’t do something I could always do, SOMETHING’S WRONG.

Right now my baseline walking ability is pretty damn good for someone with spinal stress fractures. On an average day I can take my walker out in the hallway and do seven laps in a row. I get sore but I could usually push on further if I had to. I am not even necessarily out of breath after all that.

One day recently I did two laps with extreme difficulty and then my legs got wobbly and almost gave out. It felt similar to a congenital myasthenic syndrome sort of thing, muscular and not back related. I’d also been feeling weird all over my body, and getting disoriented and having unusual emotional reactions.

I did what I’ve been taught to do. I reported all this to the nearest medical professional. I don’t remember who she was, not that it matters because the point of this post isn’t to put her on the spot. But her reaction was very typical of medical professionals in general when dealing with me. Some of it was a general attitude people have towards patients, but watching how others are treated, I get more of it than other patients who don’t have developmental disabilities. So there’s extra biases at work for me.

Anyway, when confronted with this situation you’d expect a medical professional to ask if I was okay, or ask further questions to figure out how I was feeling, or try to find out why I suddenly couldn’t do something that was coming so easily most of the time these days.

Instead I got, loosely paraphrased, “That’s what happens when you stay in bed all day.” Lest anyone think I’m some kind of hospital couch potato, I’d been in bed that day because I felt sick, not because I’d been making a long habit of it.

Let me put this plainly: This is a dangerous level of rudeness. It turned out I had low potassium. This was one of the first signs. It is almost always true that if I have sudden extreme difficulty doing something I could do easily just one day before, something is going wrong with my body. It is wrong both factually and morally to, within a matter of seconds, jump to the conclusion that I just need to work harder or that I’ve done something to cause the problem.

It’s also mean and puts me in danger. It’s dangerous because it makes people less likely to look for whatever is really causing the problem, which is often something that could turn serious untreated. It’s also dangerous because it makes me less likely to ask for help or inform anyone next time. And it’s mean because it treats me different than you’d treat a friend or expect to be treated yourself if you suddenly had trouble doing something you can always do.

There’s very little compassion in the response I got, but it’s pretty standard towards DD people with health problems. It’s one reason that rather than slacking, we tend overall towards pushing ourselves until we drop. Many end up in the hospital. Many die. Often from conditions that are treatable if caught early. That’s one reason I take these dismissive responses so seriously. It might not seem like a lot but the overall consequences can be extreme.

So please, if I say I’m having trouble, treat me like I’m having trouble and try to find out why. Don’t treat me like I must’ve done something to cause it and need to be pushed to work harder. And as always, I’m saying this on behalf of whole classes of people who get treated this way, not just myself. It applies to all of us. But I’m asking for myself, too. I don’t deserve to be treated like this either.

Author:

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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