11:00pm July 20, 2014

Near-death by ableism by denial of medical care.

I almost died last year because of ableism. I was in the hospital. They didn’t want to give me a feeding tube because, they said, I would have no quality of life with a feeding tube. They acknowledged that life without a feeding tube would eventually kill me, from starvation or aspiration pneumonia, whichever got me first. I luckily had the power of tumblr and the Internet behind me, calling the hospital and telling them they were being watched. Suddenly I got my tube. But not before being put through hell and back. And without the support of those people online, I could easily have died in there. They knew I needed the tube, because they didn’t deny the tube, they just tried to talk me out of it. If I hadn’t needed it, they could have just denied it. Instead, they did their level best to talk me out of a life-saving procedure. And that is the kind of ableism that I live with every day.

When I went to the hospital that time, they said that because I had a developmental disability, then they would not admit me unless I had 24-hour staffing from the local DD services agency. They had no reason for this request. I had never required more care than non-DD patients. The only reason they did this was prejudice, and once we called Patient Relations, they rapidly withdrew their demands. And that is the kind of ableism that I live with every day.

By the way, I love my tube. I have loved my tube every day since I got it, complications and all. My tube is my friend. My tube is how I get food, medications, and water. My tube is wonderful, most of the time. But even people who only grudgingly like their tubes, or resent their tubes, still generally want to be alive. And ableism keeps a lot of us from ever getting the chance to try the tube. Even though the procedure is completely reversible, even though the procedure does not interfere with normal eating, somehow getting a GJ tube is seen by doctors as a death sentence. I prefer to see it as a ticket to life, for as long as my life will stand up. I love being alive, and the assumption that I wouldn’t love being alive if I had a tube, that’s ableism all over again.