Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Tuesday, August 13, 2013

Medical Discrimination

Trigger Warning: Medical discrimination, gaslighting, invalidation

This is what I had planned to use for Blogging Against Disablism Day 2013, until I saw the bit about a family keeping their autistic son (naked!) in a cage. So that and similar abuses are what I wound up talking about, because none of this is isolated.
Medical discrimination based on disability. It’s a thing. It’s why Lydia is scared of doctors. It’s how Amanda Baggs was almost allowed to die, was still told to consider the alternatives after it was made clear to all parties that the only alternative to the (standard for her condition) procedure was pneumonia and death. It's why Not Dead Yet is a thing, needs to be a thing.
And people have trouble believing it.
As perhaps you can tell, considering that this is August now and nowhere near the date of BADD, this sat for a while. It's back, from a slightly different angle than originally planned. I'm talking about the ways that doctors miss problems, ignore problems, and discriminate based on psychiatric diagnoses. There's a thing called diagnostic overshadowing. There was a recent New York Times piece, with some statistics and some personal story, and it's a big problem. A person going into the hospital for migraines (it shouldn't get to the point where you need the ER for a migraine if people are giving proper care in the first case, but it happened) was given saline and electrolytes instead of pain meds, despite having been told they were going to get pain meds.
That's on top of the inhumane treatment given at the hands of the system. WHO calls it a human rights issue, by the way.
Yeah, it's ugly. There's a reason that my tweet to the #Dearmentalhealthprofessionals tag is:
#dearmentalhealthprofessionals Your coercive system makes avoiding care a RATIONAL decision for many who could benefit. How will you change?
Because it is. If you knew that you had a mental health issue, and that you might be able to manage on your own, and that if you went into the system you faced real risks of:
  • Losing your right to vote
  • Being involuntarily committed to a mental hospital for some length of time
  • Being lied to about what medication you are given
  • Having every symptom blamed on your mental difference, to the exclusion of physical medical issues
  • Having every social issue you ever have for the rest of your life blamed on your mental difference, regardless of it having anything to do with it
  • Watching and listening to your neurology being used as a cheap insult
  • Being presumed not to know what is in your best interest
Would you go into it? Or would you keep trying to handle it alone, even if it wasn't really working? That's the thing. People talk about folks who don't get care as being irrational or as needing to be made to go for their own good. That's not the issue. The issue is that the system is set up in ways that makes avoiding it a rational decision. It's not a refusal to go in because their mental difference means they don't know what's best for them.
Remember: someone (probably multiple someone's, I didn't read the whole tag) said: "#DearMentalHealthProfessionals I am Not incompetent just because I have mental health issues. Please listen to me." Someone felt the need to say that.
Because people will make just that assumption every time there is a disagreement, on everything from "I'm in pain and need medical treatment" to "I don't think this is the best treatment plan for me." That's why people don't go in.

3 comments:

  1. Such an important point. Needing help doesn't mean incompetent or irrational.

    ReplyDelete
  2. Just a note - intravenous rehydration (which is what I assume 'saline and electrolytes' means) is part of the standard of care for acute migraine, +/- chlorpromazine (an antipsychotic/sedative) added to one of the IV bags. Usually by the time someone reaches the ED, they've already taken all the usual stuff, like paracetamol, antiinflammatories etc., so we don't repeat 'pain meds' that have already been ineffective.

    As an emergency doctor and migraine sufferer, I can report that this works in around 9/10 cases. I think after 12h+ of headache and vomiting, plus not eating/drinking, most people are dehydrated and in a vicious cycle.

    Please don't confuse 'giving a treatment I didn't expect' with 'not treating me'.

    ReplyDelete
    Replies
    1. She was still lied to, though.
      So it's "claiming they would give one treatment and then giving another that I didn't expect."
      Which isn't the same as just "giving a treatment I didn't expect" either.

      Delete

I reserve the right to delete for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things. As long as we stay within those ranges, discussion is AWESOME.