Thinking About Disability Advocacy When Planning End of Life Care

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As life is wont to be, things are complicated for me right now. Due to a variety of low key health things, my parents are redoing their wills/power of attorney/etc. and have given my brother and I the gift of having ours done as well.

So here I am, a 27 year old disability advocate, thinking about what I want out of end of life care, and I’m finding that I’m suddenly being asked in a very serious way: do I believe it when I say that I believe people with significant disabilities can live good, worthwhile lives. Do I want to be kept alive with significant brain damage? What about paralysis or physical loss of functioning? My gut says no, but when I stop and think about it, the disability community has told me that those lives are just as valuable as my own. Can I truly internalize that?

Add on top of that that I already manage a chronic condition, that I’m low key suicidal like 99% of the time (I’m fine, it’s a passive thing), and that I’m frankly lukewarm about life overall, and I find myself concerned and confused.

Is it ok for me to think that MY life wouldn’t be great and that I would want to die if I lost any quality of life, while still maintaining that other people in similar situations could have perfectly great quality of life? How does this play into the very real problem of disabled people being killed with the rationale “It’s better for them”? There’s some image that it’s freedom to die if you’re disabled (which was thrown into sharp relief for me this week after Stephen Hawking died and people actually literally said those words, drew comics of them, and implied that it was good he wasn’t suffering anymore).

I’m chewing on a lot of this, and I can’t say that I have answers, but it’s interesting to notice the places where your abstract values require concrete commitment in your own life, and the way that’s completely different. I believe that disabled people can have fulfilling, good lives because they have told me so. But do I trust them enough to say that I’d live that life if something were to happen to me?

Part of the challenge with writing a medical directive is that you’re trying to imagine every contingency. I have no idea what conditions I might be addressing. And when you’re writing the directive, you’re assuming that you would be incapable of making your own decisions, which already assumes that things are pretty nasty. There’s probably a significant difference between the types of things that would cause me to require ongoing medical treatment to stay alive AND would render me incapable of giving my own consent vs. ongoing disability.

I’m currently leaning towards saying that I would prefer minimal effort be made to keep me alive. I have already experienced years of life quality that I will not live through again. I have promised myself that if I ever feel that way for months on end again, I will ensure that it stops, however I can. I live my life protecting myself from potential pain of all kinds. I firmly believe that people have the right to not live anymore, just as they have the right to live.

Does saying “I don’t want that” mean “other people also shouldn’t want that”? Obviously no. Is it different when it’s life and death? Maybe. Does saying “I would rather die than live like that” mean other people shouldn’t do it…maybe not. I can very clearly say that I would rather die than go back to the college I went to. I have nightmares about it regularly. But there are other people who have lived there and been immensely happy.

One of the things that is becoming apparent to me as I speak to more people about disability is that the experience of it is individual. Some people responded to Stephen Hawking’s death by saying “I would kill to be out of my wheelchair”. Others say that their wheelchair is freedom. When you get the choice, or at least a little bit of choice, it makes sense that there isn’t a right or wrong answer, and that the deeply personal choices you make about end of life care aren’t (necessarily) some kind of political statement about the value of life.

But even so, I want to be deeply and carefully aware of how my particular preferences are informed by a culture that says disabled lives aren’t worth living, and I want to question that narrative as often as possible. In some ways I am a coward for knowing that more often than not I cannot tolerate life. But I’m also a realist, and I don’t think it does anyone justice to shy away from the times that life is truly suffering. As always, this is the dichotomy of disability: I am worthy. I am in pain.