It sounds really complicated. I guess I’ll just have to figure it out, somehow. At the moment, I’ve put a few states between me and my mom, which is a bonus; and I never list her as an emergency contact. I guess I’ll have to do some research.

Unfortunately I’m not in a good brain state to make recommendations. But if you know anyone you would actually trust with your life (which is a big if), it’s possible to get documents made for durable power of attorney for healthcare that will allow that person decision-making power in that event. You can also do various sorts of advance directives, but you have to be really careful because those are designed to help people die, not to help people live, and there’s tricky wording. (Like “Would you want painkillers even if they’d kill you?” sounds reasonable but is also used as a loophole to kill people for reasons other than them needing painkillers that would kill them a few days earlier than otherwise. Not that I’d advise anyone either way on that, it’s just something to remember.) But if you can find a good one, you can I think even restrict what your next of kin or DPA can do even if they get that power. (I think you can also put stipulations in the DPA paperwork saying they’re not allowed to decide to pull the plug on you.) The problem with all of this also is it’s possible for hospital “ethics committees” to override people’s stated wishes to live even if they’re totally conscious and aware at the time they’re saying they want to live. But having these documents on hand is better than nothing. If you’re in the USA, laws vary by state, so the documents will vary by state as well. In some states you can even write your own, in your own words.

Thank you so much for this entry. I’m a psychology undergrad fumbling to find ways to explain to my future colleagues that helping anyone with a psychological or neurological disability absolutely must start with fully respecting the patient’s personhood. Your writings (and youtube!) have been incredibly helpful to me, and this entry in particular is something I’m going to start (metaphorically) beating people over the head with. I greatly appreciate your candor, bravery, and the time and effort it must take you to write this blog!

-A.

I wish people saw things more from this perspective–presuming competence rather than presuming incompetence. I would much rather have someone be surprised when I tell them that I cannot understand how to make a decision and need help with it, than have them automatically try to take over because they simply assume I can’t, due to my performance on some unrelated task.

But it does get the point across. I tried this out on someone the other day who wanted to know why someone he worked with was always happy in the morning and always tired and a bit grumpy in the evening. There was nothing medically wrong. The fellow I was talking to made like the person was being willfully difficult in the evenings. I suggested that maybe, by the end of the day, he was just tired, really, really, tired. This self same staff gave up after trying for five minutes to write a sentence without ‘e’ … he looked at me and said, ‘this is really hard work’. I suggested that the fellow he supported worked hard like that all day every day. I suggested maybe developing an evening routine that was enjoyable, full of things the fellow chose to do – that he’d choose things that were comforting and less challenging than his day had been. It worked. Everyone is happier.

And I asked why this man wasn’t already spending his entire day doing things he chose to do. But no one else did and no one noticed the comment and I don’t know how to say more clearly why I find that horrifying.

Except that I thought Dave Hingsberger of all people would understand that. And not just take it for granted that people with cognitive impairments who need a lot of support spend most of their time doing activities dictated by others. And that if there’s too much of that, the way to fix it is to make staff more compassionate.

And if he doesn’t get that, then who does?

You sure you’re not confusing it with something else I said? Because I have a number of different conditions. I’ve known this particular one was related to autism since I was first diagnosed with it in 2000. I could also have been making some vaguely related point and worded something incorrectly or ambiguously.