Let’s start off with Kay at The Gimp Parade:
Katie Jones is a second-grader in Lake County, Illinois, who has severe cerebral palsy and whose parents have sent her to school with a DNR order (Do Not Resuscitate) prominently attached to the back of her wheelchair. Taking that much at face value, the implications for Katie, her parents, her young classmates and school employees are complex and profound.
I’m going to let disability rights bloggers, and bloggers who actually have cp, do the talking here. Please be respectful of their voices, and remember that they are the true experts.
Trinity at The Strangest Alchemy:
There’s something about that that just really creeps me out, as someone who is very well acquainted with authorities who don’t really care whether you know what’s happening to you or not. As Amanda at Ballastexistenz has pointed out over and over in blog post after blog post, there are many different ways to be aware of things and many different ways to have that awareness respected or disrespected. Since the only thing I know of this child is that she apparently likes school, it makes the most sense to me, not knowing much about the whole thing, to try to give her as many of those good experiences as possible. CPR and the like might eventually facilitate that, so why the DNR? Why now? She’s not dying.
And the thing that really bothers me is the statement that only the doctors and parents understand. Don’t the people actually living with illnesses (and does she have one? All I see is these choking fits, which are for some reason “worsening”, despite that all she’s described as having is CP) understand far more than Mommy does? Like I say above, as Amanda and others point out, there are lots of different ways to be aware. And lots of ways in which severely disabled people are assumed not to be aware when they actually are.
Which is particularly disturbing given that all they mention in this article is that she has CP. The same thing I have. Which does not affect cognitive capacity at all, yet they’re talking in a way that suggests she’ll never be aware enough to tell anyone whether she wants to live.
Seeing people “worse off” reminds me how small my struggles are in the scheme of things.
(Thank you, dear Lord.)
But I don’t get it… if she needs help in the bathroom,
She should stay home
They have internet programs now, and books,
Why does she even come?
She’s a detriment to others.
What selfish parents.
Our children shouldn’t have to sit next to her.
This is sickening.
A tube! I don’t want my kids to watch her eat!
If a machine has to breathe life into her lungs,
Is she really worthy of this air?
What if she DIES in the classroom?
I don’t want my kids to watch someone die!
Why are her parents sending her to school?
Anyways, if I was them, I’d want to be with my daughter in her final days…
These are all comments made by people on a Chicago Tribune story that FRIDA recently posted about a young school girl in Illinois who wears a big yellow Do Not Resuscitate* sign on her wheelchair.
The article is a hard read, largely because it’s written with the assumption that if you have CP (cerebral palsy) you’re going to pass any second. Also, I have a very difficult time with these ”right-to-die” stories because although I believe in personal liberties, these particular cases are based on the idea that life with a ventilator or any assistive technology is absolutely horrific. They’d rather be dead than be me. The ironic-but-sad thing is that ventilators, powerchairs, sign language, learning braille, crutches, feedings tubes—for the most part, they make life BETTER for people. Life happens to be of higher quality, you know, when you can actually do things like breathe. Ventilators tend to help with that.
However, what was “harder” about the story were the comments that followed afterwards. (The statements above.) It seems like although there have been many changes for disabled people (like the fact that we can go to school), these things are reminders that disgust for disabled people is still prevelant.
Before you claim that I have no reason to believe that it isn’t pity that non-disabled people feel for my brothers and sisters, make sure you take the time to explain this sort of hatefulness.
I really shouldn’t have gone and read that article and the comments people left. I am crying and I know I shouldn’t be. Everyone assumes that I’m immune to this sort of thing. I am, mostly. I mean, I’ve heard all sorts of ableist remarks in my lifetime, but what person with a disability hasn’t? I can usually spit out of all sorts of sardonic responses when this stuff occurs. Everyone has something that you can use to shoot them down if they really get out of line. That’s usually enough for interactions involving one person or a small group of people. However, I’ve never learned to be emotionally equipped to take the sort of hatred I just read without breaking down inside for a minute.
You know, people with disabilities really take a lot of shit off of people. We put up with the casual use of words like “retard”, “nut job”, “lunatic”, “vegetable”, every damned day. We generally don’t go around blowing up any nursing homes prisons just because we know how inhumane they are even though some folks have no problem with this sort of “direct action”. We put up with shitty housing, illegally inaccessible government buildings, and condescending store clerks every effing day. We are raped and told that it was our own fault. Yet, we still put up with that shit.
Despite the title of the Chicago Tribune article being “Schools ponder role as child nears death”, there doesn’t actually seem to be anything here to explain why she is supposedly near death, apart from the vague “increased susceptibility to infection” (which is true for a lot of people with a lot of impairments, but doesn’t necessarily prevent them, with medical people who actually regard them as human beings with the same right to life as any other, from having a “normal” life expectancy). Katie has “severe” cerebral palsy; from how she looks in the photos of her on the Chicago Tribune website, i know several people with CP as severe as hers is, who were not expected to die at the age of 8.
It seems that with this case, just like those of another Katie and of Ashley X, Katie is being talked about as if she has absolutely no means of communicating her own wishes, or even of having wishes about her life – yet, unlike Ashley or Katie Thorpe, Katie Jones actually has a communication aid, as shown in the 4th photo, which the caption explicitly says “enables her to express her thoughts” – yet there is no indication at all that she has even been told about this “Do Not Resuscitate” order, let alone asked whether she would want it. (Also like those other 2 cases, it seems as if misinformation is being spread about the child’s impairment – which in all 3 is nothing more than cerebral palsy – in order to make it look both less familiar and more “horrific”, in order to justify horrific “treatment”, than it is.)