NPR did a story on how disabled people get substandard medical care, because medical professionals simply have no idea how to interact with disabled people. Of course the story had it’s own bias – see if you can spot it:
What was different about this patient? Was it a dangerous, contagious disease? A mental health problem marked by a violent streak? A history of weekly drunken visits to the ER?
The context was a patent being ignored in the ER by medical personnel who didn’t want the work involved with looking at a person in a wheelchair. Now, I’ll note that people with dangerous diseases, mental illness, and substance abuse also need help in the ER when they come in. People don’t show up just for fun (yes, I know some doctors think people do, but seriously, no, we don’t), even when we’re complicated. When I go to a doctor, I worry that if what I complain about can’t be seen, in black-and-white, on the printout from a lab or on a computer screen, then it’s not real. Oh, it’s real enough. But not to the doctors. It’s in his head, and thus untreatable with real medicine. I’ve seen this with plenty of people I know – their concerns, because they are medically complicated get dismissed as rantings of a crazy person that is just wasting people’s time. It’s amazing what happens when the lab results come back with some actual problem – suddenly, it’s worth treating the person, and the problem has just become real. It’s no longer in their head. I’ve seen several responses to people with autism and other neurological disabilities at the ER and doctors’ offices:
- Most common, “you aren’t really sick.” Nevermind you’re complaining about a pain severe enough for you to find a way to drag yourself out of your home, deal with ignorant medical staff, rack up a huge financial bill you can’t afford, and put up with insulting and degrading procedures. You’re not really sick. Only non-disabled people get sick, after all. You’re disabled.
- Related to the above, “Of course, you have .” Everything wrong with you is seen in the light of your disability, and thus untreatable. If it’s a neurological disability, it’s your craziness that is causing this. You’re not screaming because you’re in pain, you’re screaming because you’re batshit nuts (get out the Haldol!). Nevermind it may really be a toothache or menningitis or a UTI – we’re seeing it as crazy. If you have a physical condition, then it’s all about that physical condition. Can’t feel your fingers? That’s probably because you’re in a wheelchair. No big deal. Take a Tylenol if it really bothers you.
- You’re what? This is the, “Oh, you’re an artist?” in response to telling a doctor or nurse that you are autistic, followed by your explanation, “No, AUTistic, not ARTistic.” Repeat times 10 if you have a speech disability too. I’ve seen this with people who have relatively common medical conditions – “Does that mean you have sex with men and women?” in response to hearing someone is intersexed (yep, that gives great confidence you can care for a complex condition). “I don’t talk” written on a piece of paper (after 10 minutes of getting them to notice the paper) gets the, “So what does that mean?” response. Oh, it also proves you’re crazy unless they can see you have a physical cause for your muteness, like a missing head.
- You’re an addict. A lot of us are on a lot of medication, and if that includes pain medication, then that’s the cause of the problem. You see, we’re really druggies seeking more drugs. Nevermind that our doctor has trusted us with Opiates for 20 years and knows we don’t run out before we should and that they help our body. No, we’re saying we hurt because we really want more drugs for our fix, not because we want someone to do something about the unusual pain we have right now. So the last thing you’ll get, if you have chronic pain, in an ER is help with your pain if you have an unusual pain. Every person with chronic pain is looked at as a druggie. Oh, they have no problem putting this in your file based on knowing you for all of 5 minutes. It’s the one thing in your file they’ll actually read next time they ask you to tell them every surgery you’ve had since birth (which you’ve done 20 times in the past at the same hospital).
- This one always scares me: “Oh, this is interesting.” It means that this doctor sees herself as someone who can unravel medical mysteries in 5 minutes with no background on my complex medical history. They’ll take 5 minutes with me and decide, “Oh, you’re primary care doctor doesn’t know what they are doing. They are treating your chronic condition using . You really should be on ” Nevermind you’ve tried X, and X doesn’t work or really does make you batshit crazy.
When I go in, I literally pray, “PLEASE let this be something obvious and easy to diagnose.” Because if it’s not, I’m going to get injected with psych drugs I don’t need, have my other medications discontinued in favor of this month’s preferred drug, be told that I don’t really hurt, and have my file annotated with “drug seeking.” Seriously, I’d rather have a heart attack than a severe, but non-life-threatening, pain when I go to the ER. The heart attack they will find quickly and treat effectively – because they can ignore everything I say and still treat it. But they will ignore everything I say if what I say is essential to diagnose the real problem. Just once, I’d like to go to an ER – or have my disabled friends go to an ER – and be believed from the start when we say we hurt and need help. Just once.