Tag Archives: health

Another reason why disability rights is so important

(fair warning – I am writing this post rather last minute, without the usual editing process that my posts usually get. If it seems rough or raw, that’s why)

Allow me to introduce Amanda Baggs. Amanda is an autistic self-advocate and is fairly well-known in the disability community. The above video is from her youtube channel and is one of the first I ran across when I was looking into autism. Amanda also has a number of other conditions, one of which has become life-threatening.

So, naturally, she has gone to the hospital and is working on getting necessary, life-saving treatment.

Key phrase there. “working on.” Not just getting the treatment, working on getting the treatment.

Why is that?

Because she and her advocates are finding themselves in the position of needing to fight various doctors (and med students) who think that she would be better off dead.

I’m not exaggerating.

On her tumblr Amanda has been writing about her experiences with doctors and the hospital. In one instance she was consulting with a specialist. The specialist kept saying that instead of getting the necessary (and minimally invasive) treatment, she should look into “alternatives.” Her DPA spelled out, explicitly, that “the alternative” is, in fact, death. Her condition is life-threatening. She needs treatment.

Now, I want to make this next part really clear. The doctor, in fact, agreed with this assessment. Yes, the alternative is death.

After doing so, he continued to push for “the alternative.”

In essence, he was saying that she should seriously consider dying as a better option than not dying. That maybe her life isn’t really worth living.

THIS IS NOT OK. Seriously. I shouldn’t even have to say that. Amanda should not have to fight her doctors just to convince them that, actually, she’d rather keep on living. It’s bad enough that we have to fight just to be allowed to go to school. Fighting to live is supposed to be about getting the treatment and fighting whatever illness or condition is threatening your life. It is not supposed to be about fighting your doctors just to get treatment at all.

The only person who gets to decide if Amanda’s life is worth living is Amanda. Clearly, Amanda is quite confident that she wants to keep on living. THIS SHOULD END THE DEBATE. Actually, there never should have been a debate in the first place. No one should question this, ever.

Now, things are getting better for Amanda. She is well known, she has her DPA, people are pressuring the hospital to, you know, do what they’re supposed to do. However, not everyone is so lucky. This is something that has happened to people in the past. It is happening to people now. It will happen to others in the future. We really need to make this stop.

What Amanda needs:

Make noise. At some point I really should write up a defense of the “slacktivism” thing that gets so much scorn, but for now I’ll just say – I believe in noise. Sharing and showing support are useful things to do.

From webmuskie‘s tumblr:

It may be time to add angry phone calls to the hospital to the prayers come Monday morning. (the switchboard # is 802-847-0000 FYI, though you won’t be able to find her in the directory for reasons of privacy. Not a problem because come Monday the hospital administration will surely know who we are).

Fair warning – if you go that route, she is apparently checked in under a different name, which has not been shared with the public. The hospital administration knows this.

What we all need:

For disability to stop meaning “less.”

For everyone – including and especially doctors – to stop thinking they get to determine if other people should keep on living.

And, to throw in a quick line about it being Autism awareness month – this is why awareness isn’t good enough. We’re not being greedy or uncooperative or whatever when we say we need more. We really do need more.


Filed under issue, rant


This is a topic I’ve been thinking about writing for a while now, but it’s another one that is fairly challenging for me to write about, both in terms of my own history and in the fact that it’s a fairly delicate subject matter, and I hold unorthodox views.  It is also a potentially triggery subject matter for readers, but I will try to write it in as un-triggery a way as I can manage.
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Filed under issue