A link to a Katie Jones Roundup
Katie Jones is, well, here’s the article.
Kactus has posted a link roundup to posts about this. To Kay at the Gimp Parade and Alas, Ms. Crip Chick, Bint Alshamsa at My Private Casbah, Trinity at The Strangest Alchemy, Shiva at Biodiverse Resistance, F.R.I.D.A., and brownfemipower at La Chola.
Sylvia at Problem Chylde has a great post on this as well.
Read all of those posts, because my paltry few paragraphs do nothing to illuminate this.
I find this disturbing, to say the least, because it shows yet again that some lives are disposable, or perhaps just less valuable than others - in this case, a child with disabilities. I don’t know what Katie Jones’ wishes are, whether she wants to live and is willing to go through resuscitation again, but that’s because the article doesn’t tell us. It makes her parents’ wishes very clear. But this is something that comes up again and again when it comes to parents of children with disabilities - the child is dehumanized into a burden that the parents must bear, and many (or even all) decisions about that child’s welfare come directly from that position as a burden, or even the assumption that able-bodied people know what’s best for their children with disabilities, as if the child’s wishes just aren’t relevant.
In the extreme, we see parents murder their children, and not only do they not suffer harsh sentences for doing so, they often receive sympathy from the press and community because they had it so darned hard because of their child’s additional needs - and never mind the fact that the child’s life is just written off.
Trinity has several posts about murdered people with disabilities.
I’m not saying Katie’s parents are on the verge of murdering her, but requesting that life-saving medical care be withheld if she’s about to die without it doesn’t fall far from that tree as far as I’m concerned. Children with disabilities aren’t pets to be put to sleep when they become too much trouble, they’re human beings, on the same level as any able-bodied person, and deserve to be treated as such.
And yeah, the story makes me angry.
December 29, 2007 at 5:39 pm
i have some posts of my own up about the many murders, though I’ve been remiss for a while and at least one has happened since that made news.
December 29, 2007 at 5:45 pm
And they barely make a ripple compared to parents who murder their able-bodied children, do they? The only reason I know as much as I do is because I read your blog, or Amanda’s blog, and not because I ever see one mentioned in the news.
Sylvia quoted this bit:
Because it’s better to live a shorter life with a natural death than extend it and possibly live a much longer life.
Just, ugh, so much of people deciding what’s best for other people on a false basis of able-bodied authority. :(
December 29, 2007 at 10:26 pm
But this is something that comes up again and again when it comes to parents of children with disabilities - the child is dehumanized into a burden that the parents must bear, and many (or even all) decisions about that child’s welfare come directly from that position as a burden, or even the assumption that able-bodied people know what’s best for their children with disabilities, as if the child’s wishes just aren’t relevant.
Yeah, that. In this particular case, it appears that Katie might be capable of discussing her situation and needs and desires, yet she is not even presented in the article as capable. In fact, the topic never comes up. Not even to say they’d like to ask her, or tried to ask her. It’s like she’s not even relevant to the decision.
December 29, 2007 at 10:37 pm
Yeah. The fact that she uses FC at all is relegated to a photo and not even discussed in the article was not really shocking or surprising, but it was disappointing. I wouldn’t have even noticed because I rarely check photographs in online articles.
I wish journalists would focus on the children as themselves, rather than on the parents with children with disabilities as accessories, but that whole thing is just entrenched in society - not excusing journalists here at all, but rather acknowledging that nearly everyone participates. :(
December 30, 2007 at 5:42 am
Thanks for this, Lisa. You, Trinity, and others have been really succinct and hitting the spot about this one, whereas my post, looking back at it, looks really unfocused and rambling. I might change the title as well, because, obviously, it’s not just Illinois.
This shit, the murders of autistic kids (including murder/suicides of parents who “can’t cope” with having disabled kids), Ashley X, Katie Thorpe, prenatal testing with the aim of selective abortion, the routine genital mutilation of intersex or ambiguous babies without even their parents’ knowledge, “physiotherapy” which is intended to superficially replicate normality rather than maximise function on a disabled person’s own terms (and which can be experienced by children in a similar way to sexual abuse - see article “The Stairs Don’t Go Anywhere” at http://www.normemma.com)… it’s all about intolerance of diversity to me.
And, more than that, it’s also about an attitude by parents to their children that deeply disturbs me - treating their children as possessions, to be rejected, “mended” or “customised” as the parents see fit, rather than as human beings who deserve to be accepted for who they are. It sometimes seems like the only parents who don’t have that sort of attitude towards disabled kids (apart from the rare, genuinely enlightened parents who are themselves disabled people or allies) are the religious fundamentalists… and, of course, they have the same attitude to gender variance or non-heterosexuality. :(
I *suspect* that this is something endemic to the modern (post-Industrial Revolution) construction of the nuclear family, but i’m not quite sure where to start looking for the conceptual links…
December 30, 2007 at 7:34 am
yes, that. part of the reason I was so uncomfortable with sexuality for so long was not just that my own sexual proclivities and fantasies never matched normative ones, but also
well, the “standard” sexual position is missionary
which means someone like me is expected to lie down and spread her legs… how can I do that in an intimate situation and experience that as loving or even fun when I have memories of someone on top of me wrenching my legs apart?
i think we really, really, really don’t talk about how violations that are not explicitly sexual can have sexual effects. that’s part of why I love that article you link to, shiva.
December 30, 2007 at 10:41 am
I presumed you would already have read and be familiar with it…
December 30, 2007 at 1:30 pm
yes I had already seen it.
December 30, 2007 at 1:36 pm
Shiva, I thought your post was good, although I do sympathize with your closing paragraph a lot. I’ve done that more than my share of times.
I also agree that this has something to do with the nuclear family, although I also think there’s a lot of disability hatred that doesn’t come from that. I don’t know, it’s all just pretty awful. :(
January 19, 2008 at 10:24 pm
lisa—are you doing okay??
January 20, 2008 at 1:09 am
I’m doing so-so. I’ve been having a lot of stuff. I’ll e-mail you about it, rather than spill it here.