The next Ashley X
Her name is Katie Thorpe. Other bloggers have been covering this latest story. Penny has the link collection here. Let her know if you got a link to add to the list.
I've said all I plan to say for the time being in comments at Feministe, mainly in response to the notice that disabled people weren't contributing to that thread. Here's a repeat of my comment over there:
There are a number of us disabled bloggers and blog readers around who weigh in here at Feministe occasionally. Many of us (not me this time) have been writing about this case during this past week. I’m sitting out this round (of debating the specifics of the UK case) for the reasons I specified last January when the Ashley X case came to attention, summed up beautifully by Brownfemipower back then:
Maybe, just maybe, bloggers who are disabled don’t really want to discuss shit like this over and over and over again–especially when people are not just discussing their right to access or something like that (where the presumption of humanity deserving of life is at least present), but are actually challenging disabled peoples very right to live as autonomous respected human beings. Maybe bloggers who are disabled really don’t feel like debating whether or not they are “burdens” worthy of extreme forms of violence just to suit able-bodied people. Maybe they aren’t interested in debating whether or not they have a right to be alive.
The typical response to what BFP says there is “But disabled people don’t know the burden of caring for disabled people.” Or “But the girl in question is much more disabled than these disabled people arguing against the treatment.” When exactly do our voices and experiences become relevant? I always forget when that’s supposed to kick in?
One final thing: It’s good to remember that in the case of Ashley X, the hospital broke the law by not obtaining a court order for the surgery — one step in the process meant to insure her interests are considered separate from her caregivers, specifically with regard to a disabled person’s reproductive rights. Also, though it wasn’t revealed until a full month after the media storm, the hospital ethics committee was torn on this case and in the absence of a consensus, they granted the parents’ wishes. That decision (or lack of one) occurred without any sort of disability rights perspective on the ethics committee.
20 comments:
This is f*cking insane. Why do people keep thinking this is a good idea?
So what if she cannot be discreet? Is it perhaps time that we stopped freaking out every time somebody got a period?
PERIODS. WOMEN HAVE PERIODS. WE MENSTRUATE, AND WE BLEED, AND SOME OF US ARE DOING IT RIGHT NOW, RIGHT IN FRONT OF YOU, EVEN AS YOU CONVERSE WITH US OR DO BUSINESS WITH US. ANY GIVEN HANDFUL OF US IN ONE ROOM OR ON ONE BUS OR TRAIN CAR MIGHT BE EVEN DOING IT AT THE SAME TIME. DEAL WITH IT.
(Sorry; feeling a bit ranty this morning -- and it's not even my time of the month!)
The next Ashley X is indeed different. Doctors are seeking legal permission before they perform needless and ethically objectionable surgery. This case proves it is hard to kill a very bad idea.
i was so glad to see your comment over there this morning.. the ones on feministing are even worse.
how do you keep your spirit up during these sorts of things? how do you keep going?
It's exhausting, isn't it, CripChick? Sometimes I have to avoid it all and live my life. Sometimes I have to write about it. What's most helpful is reading the words of like minds, I think, the people who get it. I haven't been blogging as much lately partly because this kind of thing is so draining.
Excellent post.
cheers,
IP
"What's most helpful is reading the words of like minds, I think, the people who get it. "
YES. Thank you all for existing :)
G-D the comments over at Feministe are driving me batty(er)(than I am). I don't even know what to say. I think BFP hit it right on the head on this one - it is exhausting having to debate the right to be alive of me, my friends, my clients, and other people with disabilities.
Actually, I think that thread at Feministe is going much better than most do. Zuzu wrote that post, but Piny, in particular, has started some great conversations over there merging the issues of feminism, disability rights, transgender issues, and such. I think Feministe is the best mainstream feminist blog for both touching on disability issues, and having many commenters that are supportive or at least not openly hostile to disability rights.
Kay,
I agree with the comment left by William Peace - Katie Holmes is very different to Ashley x, not least because the issue of the removal of her womb remains undecided. But I wonder, more generally, about the efficacy of focussing upon similarities and not differences. In focussing upon similarities, certainly in this case, the concern is that it lends a certain inevitability to the removal of Katie's womb that can mitigate against intervention and resistance.
These articles are just bizarre. Indignity of menstration? I mean, I'm not overly fond, but it isn't undignified. And the discomfort of large breats? Mine are bigger than most and they are most certainly not uncomfortable enough to necessitate anything more than a good bra. I don't understand how they are even able to predict that she might have breats large enough for that to even be a worry.
This is why I have mostly stopped participating on my alumnae listserv. For years I would challenge prejudiced posts about people with disabilities but I it is just too exhausting and dispiriting when the same people say the same bigoted things over and over. Another alum with disabilities has also quit participating but I don't think the group has even noticed or realized why.
Yeah, so much fun to have your right to exist, to live, to be born even challenged by intelligent women. I stay away from mainstream blogs on the whole.
http://hymes.wordpress.com
But I wonder, more generally, about the efficacy of focussing upon similarities and not differences. In focussing upon similarities, certainly in this case, the concern is that it lends a certain inevitability to the removal of Katie's womb that can mitigate against intervention and resistance.
Linda Edwards: I hope you get a chance to come back and talk more about what you mean by the differences of the cases. Or point me to discussions of that which don't devolve into nondisabled people creating some sort of mantra logic that goes like this: "This case is unique and you don't know this girl or her mother personally, so your experiences and beliefs as disabled people hold no meaning here."
I do think discussing particulars of each situation are important. But I believe the thought process by much of the nondisabled population is fairly unsophisticated with regard to actual experience with disabled people, disability rights, and the history of discrimination and abuse of disabled people. Instead, the issue gets filtered through philosophy about personhood, libertarian ideas about choice, or a feminism that focuses on rights from a nondisabled woman's perspective. That lack of sophistication about how all these cases have similarities needs to be countered before disability rights issues are considered valid. Otherwise, swaying public opinion on one case only means changing minds about that one case.
Another alum with disabilities has also quit participating but I don't think the group has even noticed or realized why.
I've observed this scenario in online feminist discussions about race too. The black women grow quiet, give up or leave. Or they stay and keep raising their point of view and are labeled hostile because of their tone or something.
Kay,
as well as cultural, class and social differences between ashley and katie,the primary difference I have in mind right now is the death of Dr Gunther. Ashley's case is very different from Katies because Gunther is another casuality of Ashley's "treatment. But what does this difference have to do with Katie's situation? I'll try and explain. Although it has been said that Gunther killed himself because of depression, it is difficult to believe that his depression was not compounded by the controversy about the ashley treatment. I wish his family would say more in this respect about his feelings post ashley. But you have also noted in a previous post that the ethics committee was awfully divided about the case - there was apparently a good deal of anguish and indecision amongst those doctors on the committee. This indecision was manifest not only between people, but also within people, including Dr Gunther. As I read between the lines, his indecision had not resolved itself before her "treatment" was carried out. In commenting about his death, Dr Diekema, the other surgeon, remarked that Gunther never wavered in his belief that it was right to go forward with the ashley treatment. But the tragedy of Diekema's remark is that Gunther did indeed waver - he was very torn about the ethical implications of the treatment. In the long run, his personal anguish, his feeling that it was wrong, along with his vilification in the media, were too much for him. With regard to Katie's situation: a primary concern must be that the opportunity to discuss the always already presence of uncertainty, anguish and indecision on ethical committees has been closed down by Diekema's comment that Gunther unwavered in his support of the treatment. I wonder how the representation of Gunther as another casuality of the ashley treatment, as a man who grieved and regretted his actions, would effect deliberations about the proposed removal of katie's womb. For example, an immediate question is how should doctors proceed in the context of so much doubt and indecision? There is also an opportunity here to finally put to rest the representation of doctors and physicians as rational, autonomous, as somehow devoid of human feeling. No, I don't agree with the Ashley treatment. I was terribly shocked by it. But I also feel diminished by the media's representation of Dr Gunther as simply the man who stunted Ashley's growth, rather than as a major player in the ashley treatment who was shot through with indecision and doubt about its ethical implications and remained so. This is his legacy vis a vis the ashley treatment. I think that indecision is awfully important - this is where change and transformation can come from. Indecision and doubt suggest that there was an alternative available at the time (I am reminded here of the doubts that the nurses had during the botched attempt to remove Ruben Navarro's organs). In both cases, why did they go with the treatment, rather than call it off? How can disability activists capitalize upon these documented instances of doubt in the campaign for transformation?
I would like to say something to your comment about feminism and disability, but another time, perhaps!
"But the tragedy of Diekema's remark is that Gunther did indeed waver - he was very torn about the ethical implications of the treatment. In the long run, his personal anguish, his feeling that it was wrong, along with his vilification in the media, were too much for him."
I think that's reading too much into the available information. We have no idea why he made the decision he made to end his own life. But it's plausible that the reason may have absolutely nothing to do with this one case or anything surrounding its notoriety. The farthest I'd go is to say that the stress at work in the last nine months probably didn't help him resolve whatever underlying struggles he was experiencing.
I agree with Penny. Unless there's a smoking gun-type suicide note that comes to light, I do not believe it is accurate or appropriate to speculate that the Ashley Treatment was the cause of Dr. Gunther's suicide. And it's a family tragedy I'm absolutely unwilling to capitalize on for political purposes.
I'm saddened that you have read my comment as suggesting we use a family tragedy for political purposes. Nor was my post intended to be read as a speculation about the cause of Gunther's suicide. It was about doubt and uncertainty more generally, and using that. In your post, Kay, you mention the ethics commitee's lack of a decision at the time - you seem to be citing that as a criticism of them, as though it is a bad thing. But I am thinking that maybe its not a bad thing, and its a particularly good thing that its out in the open. Rather than criticize them for it, lets see if something good can come out of it. The committee's uncertainty and doubt serve as a reminder that there was another option at the time - that their deliberations about ashley occured on a continumm of possibilities, and not within a binary of yes and no. The committee wavered - they could of said no. Isn't that an opening of sorts for some discussion about doubt and uncertainty and how to make ethical decisions around it in the future.
I'm not sure its useful to criticize the doctors for not been certain enough, which is how I read part of your comment. Its to hold them to standards that noone is capable of. Given that they are also doubtful subjects, then what can we do with that? What might an ethics based on these qualities look like?
I know I'm clutching straws here. but I'm trying to do something different. As important as the call for disability and human rights is, we need to try something else. The disability rights movment, their discourse, is for the most part mired in the binary of us and them. Its not productive. Binary thinking is not productive, nothing changes. My attempt here to do something with uncertainty is an attempt to do something with the binary of certainty/uncertainty, rational/irrational, us/them. The ethics committee in their uncertainty demonstrated similarities with others, not difference. They showed themselves to be subjects who reside on a continuum with certainty and rationality on one end, and doubt and irrationality on the other - they wavered and moved between them. I'm just wondering about what an ethics based on that would like like. An ethics whose starting point was not the binary between the doctors and ashley but rather their interdepedence, their co-existence on that continuum.
I hope you respond.
As important as the call for disability and human rights is, we need to try something else.
I'm not quite sure what to make of your comment, but this is ridiculous. The call for human rights is not something to be set aside.
Its not a call to set aside human rights - its simply a call to do something else in addition to calling for human rights. Its a call, in this case, to look for the limits of medical discourse - its doubt and uncertainty - and to ask for some accountability for those limits.
My apologies, Linda, for taking so long to get back to this:
Okay, I can see what you mean about doubt and uncertainty being hopeful, though someone having those feelings isn't really good enough for me if the default outcome to uncertainty is to go ahead with the Ashley Treatment anyway. And then to appear to support it unequivocally in the media.
I also agree with you that the binary thinking of disabled or nondisabled, us vs. them is unproductive. And I think it's useful and imperative to keep trying to blur those lines when possible, but it's not just the disability rights movement that has made that blurring harder: the U.S. Supreme Court focus on who fits the definition rather than what is discriminatory behavior is, imo, the biggest perpetrator of the us vs. them binary.
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