When is it wrong to save the life of a child? When that child is a disabled child, it seems...

FRIDA and Ms Crip Chick have already blogged about this story, but i haven't seen it on any other disability blogs yet - in fact, the first place i saw it was in a thread at the autism forum Wrong Planet.

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.)

The comments posted on the Tribune website (many of which now seem to have disappeared, unless i'm just getting confused looking at it again) were even more sickening - more and more of the same crap that every story about the murder, "euthanasia", torture or mutilation of a disabled child gets about "unless you have been in the position of the parents, you have no right to judge" - with no one even considering the thought that anyone reading it might have been (or even still be) in the position of the child. I can't help thinking that there is something other than just purely disablism here, but something about people's presumptions of the role of parents towards their child as well - is this a symptom of our nuclear-family-worshipping society, where it is almost a blasphemy to even suggest that a parent might have feelings or intentions towards their child that are anything other than pure unconditional love and acceptance?

(To go further than that, it's not just the assumption that parents' intentions towards their children are always good, it's the extension from that that good intentions are enough to absolve a parent of all blame for treating a child badly - even to the point of mutilating or killing that child - because, seemingly, anything done with good intentions is something that cannot legitimately be criticised, no matter what its consequences. This, IMO, is a perversion of certain elements of moral philosophy with their roots in Christianity, but discussing that is a topic that needs another post. Suffice to say that i don't judge the morality of people's actions by their intentions, but by their real-world consequences.)

I feel almost unable to summon up the impassioned outrage and argument in defence of this child's right to life that i feel is necessary here... i'm too tired, or cynical, or detached, or something. I feel like no matter how well i argued in the Chicago Tribune comment thread, i would get shouted down by people who would treat my whole argument as not just wrong, but illegitimate in the sense of being outside the bounds of "reasonable human decency", or some such phrase that i would be unable to respond to because of it lacking any substantive meaning for me.

I also gave up on bothering to post on the Wrong Planet thread because of some of the comments posted there being among the most horrifically demeaning and patronising ad hominems i have ever seen... in fact, i've almost given up posting on that forum at all because of the bigoted and fucked-up views of what seems to be a large majority of the posters there, on things as wide-ranging as economics, US imperialism, gender, sexuality, class, race, etc, to such an extent that it often feels impossible even to express any sort of joined-up thinking about oppression, diversity or solidarity there... which lack of wider consciousness might be a function of it being a "community" defined in an impairment-specific way, or might not be - i'll have to think about that one further...

Anyway... this should be something that would provoke international outrage, but it hardly seems to have made a ripple, and i'm... something i don't have a word for right now, but roughly equating to disgusted, depressed and horrified, yet not surprised, that it's seemingly being treated as not even legitimate to see anything wrong with this, to the extent that anyone trying to express their own outrage over a wholly innocent person being treated as "not worthy of life" gets psychopathologised out of the possibility of reasonable argument, dismissed with stuff like "have you talked to your parents about this?"... as if it's a given that a) this child is dying (when there actually doesn't seem to be any solid evidence for this) and b) even if she wasn't, her life is a fate worse than death...

I seem to be having a strange inability to express my views in ways that still look like my actual views once i've written them at the moment. Fuck it, i'll post this anyway, and maybe edit it later...