medical ableism

you don't have to be perfect at self care to deserve medical treatment

Disabilities and chronic conditions often require difficult and time-consuming self care.

For instance:

  • People who are paralyzed have to pay very close attention to their skin to avoid dangerous pressure sores
  • People with CF have to do a lot of breathing treatments
  • A lot of people have to keep track of a very complicated medication schedule
  • Or any number of other things

A lot of medical complications are preventable with the right self care. But no one manages perfect self care, because self care is hard, and people are human and nobody is perfect.

Making a mistake that leads to an injury that was theoretically preventable sometimes pisses off doctors. It’s also something that people sometimes feel very ashamed of. This can be a deterrent to getting medical care.

It’s not right that it’s this way. You don’t have to be perfect to deserve medical care. Sometimes you make mistakes and need treatment. That’s part of the human condition, and it doesn’t mean you’re somehow less deserving.

Nondisabled people injure themselves doing careless things all the time. People who fall off bikes in a moment of carelessness and break bones get to have medical treatment without facing that kind of hate. So do people who burn themselves cooking. Doctors are capable of understanding that people make mistakes and get hurt — and people with disabilities deserve this understanding just as much as anyone else.

Everyone who needs medical care deserves it. Including people who make mistakes. Including people with disabilities who make mistakes. You don’t have to be perfect at self care to deserve treatment.

Rigorous attention to self care is important. So is medical support for needs that arise, including as the result of mistakes.

“What he would have wanted”

Talking about what someone would have wanted only makes sense if that person is dead.

If the person you’re talking about is still alive, talk about what they do want.

And assume that they want to live. Almost everyone does.

Even if they’re brain damaged, even if they’re in pain, even if they have dementia, even if they no longer recognize people.

They’re still a person. They’re still there. And they still want things.

So don’t ask what they would have wanted. Ask what they do want.

Rejecting particular help vs giving up

Rejecting particular help vs giving up

Sometimes, when people observe a problem, they think they know the solution. And they think that’s the only possible solution, and that if you don’t want to do it, it’s because you’re either stupid, lazy, mentally incompetent, or giving up on yourself.

And then they pressure you really hard to adopt the solution. And if you don’t, they tell you that you’ve giving up on yourself.

And maybe they withdraw other support because they don’t think you’re worth it anymore.

Or maybe they try to force you into what they want. Maybe they threaten you. (With physical force. Or with confidences you’ve shared. Or anything else that might be available.)

But rejecting a particular course of action or kind of help isn’t actually the same as giving up.

People can have agency and problems at the same time.

Some examples:

Therapy:

  • I’ve gone through some serious emotional upheaval that’s caused relationship problems and other functioning problems.
  • I haven’t found therapy to be helpful for this.
  • In fact, I’ve often found it anti-helpful.
  • And if I pay for therapy, I can’t afford some of the things that do help me.
  • Numerous people have told me that I really have to go to therapy, because they hate to see me giving up on myself. Because they just want me to get better.
  • Even though I, in fact, work hard on improving things and have serious reasons to think that therapy would not be a good idea.

Medicine:

  • This happens all the time to people who reject particular treatments
  • That dynamic can make it dangerous to say no to things or to ask doctors questions.
  • Because there’s always the fear that if you say no to part of it, they won’t let you have treatment you *do* want and need.