And Stimming With Rainbows of Every Design

Sunday, December 30, 2007

On Katie Jones, not being "allowed to die," and the supposed "disruptiveness" of diversity

I wrote this last night and already posted it elsewhere, just decided that I should probably put it over here too. So if you know me on LJ or IJ, there's nothing new here.

I'm reading the Chicago Tribune article about Katie Jones, who has cerebral palsy and goes to school with a DNR sticking out of the pouch on her wheelchair. The situation with the DNR is absolutely disgusting to me, as the whole "better off dead than disabled" attitude was when I first heard of it. Katie enjoys going to school. It says so in the article. Her life is not all pain and suffering and misery. If it were, my immediate response would be to ask what's wrong and how to solve it without resorting to letting her die. But apparently Katie's interests aren't really considered in this whole thing.

Anyway, a lot of the remarks in the comments infuriate me just from a personal perspective.

It's "heartbreaking" when "a body is trying to die and no one will let it?" Define "trying to die." Define not being allowed to die.

Hardly a day goes by that I don't consider the fact that I would be dead if I were in a different world where aspects of medical progress hadn't occurred. Without understanding of supplemental pancreatic enzymes, respiratory therapy, or antibiotics to treat certain infections that people without CF don't tend to pick up as often, I'd be dead. The same goes for people with all kinds of disabilities. The specific technology required might be different from what I presently need, but that doesn't make it intrinsically more horrid.

There are people with cystic fibrosis who need supplemental oxygen or who use respirators. Some of us require feeding tubes in order to get enough nutrition. If I required any of that in order to survive, I'd gladly take it. I'd much rather take advantage of medical tech than die. To be truthful, the only thing that scares me about it is that the fact that someone needs the respiratory stuff is a pretty good indicator that their chances of survival are way lower than they should be.

With regards to the, "OMG she's disabled, she coughs, she's different, she shouldn't be going to school bcuz OMG disruption!!!11one" thing one person mentioned, should students with Spanish as their first language be prohibited from going to school? After all, English speaking students might find their accent distracting. Should we ban openly gay students from attending school? Hey, I know, let's repeal the Brown vs. Board decision! That would be sure to cut down on the distractions caused by that dreaded diversity problem. < /sarcasm> (Sadly, in the area I live right now, I would be surprised if someone didn't reply with "Yes to all three, segregation for the win!" The region of California I live in is terrible in that regard.)

I can think of so many MORE disruptive non-disabled students. Most of the people who created a disruptive learning environment in my classes were extroverted jocks who found it far more exciting to play games and harass people during class than to participate in their work. People like me exist, and we're told we shouldn't go to school. People like my former classmates are intentional asshats, and they're celebrated by their classmates (and, if they know how to suck up to them, which most do, their teachers).

No, students shouldn't be forced to be helpers. Helper/helpee built "friendships" have serious problems. (Hell-bent on Helping). But, if the student needs one, she should have an aide. Three of the three special education one-on-one aides I met were crappy, so that may not necessarily be a good thing. But there still should be an aide to help with basic tasks and somewhere out there, there are useful, non-ableist assistants. I'm certain I've seen people writing about them before. Not that they aren't rare, but they do exist in somewhere-that-isn't-fantasyland.

So yes, it is possible for disabled students to go to school without the non-disabled students being forced to be "helpers" and having the quality of their education decline.

Back on the main topic of the article, it seriously sucks thinking (either correctly or incorrectly) that people believe you would be better off dead and would be willing to see that belief fulfilled. I went until age nine or ten hearing about euthanasia and assisted suicide and never catching on that they were illegal. When my doctors at the CF clinic had something serious they wanted to talk about, they were afraid I wouldn't be able to handle hearing the truth, so they sent me away somewhere else while they talked to my parents. I thought they were discussing whether the quality of my life was low enough for them to kill me "for my own good." I had recurring nightmares about going to the UC Davis Med Center, being tied to the wall, while doctors and nurses pointed guns at me, telling me that my quality of life was so low that they couldn't allow me to live. I can easily imagine the terror that can come from the situation Katie is in. But if I had known to research, I would have found out that I wasn't in danger. With this case it's *real,* which of course makes it infinitely more terrible.

I hate this world some days.