11:17pm March 31, 2013

➸ Attitudes about disability prove almost lethal

This link is an article by Laura Hershey about how her disabled friend almost died after being pressured into signing a do not resuscitate order. Hey, I’m not making this stuff up. It happens to disabled people all the time that we are pressured in the medical system to die. I even heard it in the sound of the nurses voice as she said “to each her own” when I asked for all heroic measures to be taken to save and continue my life.

What a lot of people don’t understand is that resisting is not easy. There’s a force of attitudes towards disability that grinds you down. And you are incredibly vulnerable when you are sick enough to be hospitalized.

Just earlier today, I almost wished I hadn’t agreed to the feeding tube. Why? I was in severe pain. My IV had sensitized my entire hand to pain, which sensitized all my other nerves and joints. I ended up in so much pain I was crying, which is a rare response for me. And in that moment, I felt like maybe I didn’t want to exist after all.

But it was just a moment. The thing is that the worst of the healthcare system sits there and takes those vulnerable moments and stretches them out. Builds on them. Makes sure you’re vulnerable while they ask you questions about life and death decisions. Because they think its easier that way. People like you always die anyway, why prolong the inevitable? Or whatever other little bit of bigotry they have stuffed up their asses.

But it’s that vulnerability. And it is an extreme vulnerability. That makes it easy to say no I don’t want the procedure. Yes I will die of pneumonia. They make it easy. Easier than living. At the moment when you have the least fight in you.

I have found amazing allies in the healthcare system. But there are those who don’t understand. Or who understand too well and really don’t want you around. Either way, being sick, tired, in pain, and so exhausted that just to type a few words to communicate can be a struggle at times, and it’s an exhaustion that healthy people just don’t know. And when you’re weary, that’s when they get you. And that’s when you need to somehow be on your guard or have someone else guarding you.

I think some of my crying today wasn’t just the pain but the exhaustion of having to fight for my existence. Nobody should have to do that, least of all with aspiration pneumonia or some other exhausting disease that seems to pull all the energy right out of you. Thank you so much to everyone who has spoken up for me. You’re telling them that I have a community, that I am a person who like them is loved and wanted and cared for. I only hope they transfer that information onto the next DD patient they want to mess with.