Is this a good enough reason? If not, what is?

Kat passed along this story from CNN that brings up all kinds of disturbing questions about bodily autonomy and disability and medical interventions:

LONDON, England — A mother is seeking to have the womb of her severely disabled daughter removed to prevent the 15-year-old from feeling the pain and discomfort of menstruation.

Doctors in Britain are now taking legal advice to see if they are permitted to carry out the hysterectomy on Katie Thorpe, who suffers from cerebral palsy.

But a charity campaigning for the disabled said on Monday the move could infringe human rights and would set a “disturbing precedent.”

Andy Rickell, executive director of disability charity Scope, told the Press Association: “It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie’s best interests.

Painful, invasive surgery on a disabled teenage girl to spare her from the “pain and discomfort of menstruation.” That, to me, sets a terrible precedent. There’s not much in the article that indicates that her periods are unusually heavy or painful, or that she’s got fibroids, or that she’s unable to take any sort of hormonal birth control. In any event, there are nonsurgical alternatives, or even less-invasive surgical interventions, like uterine cauterization.

I’m not really sure, in fact, what’s going on here. The mother swears it’s not about her:

Katie’s mother Alison Thorpe, who lives in Billericay, southern England, said the operation was in her daughter’s best interests.

“First of all, this is not about me. If it was about me, I would have given up caring for Katie a long, long while ago,” she told GMTV.

“It is about quality of life and for Katie to not have the associated problems of menstruation adds to her quality of life. It means she can continue with the quality of life we can give her now.

“Katie wouldn’t understand menstruation at all. She has no comprehension about what will be happening to her body. All she would feel is the discomfort, the stomach cramps and the headaches, the mood swings, the tears, and wonder what is going on.”

Thorpe said an operation would be best for Katie, despite the initial pain it would cause.

She added: “The short-term pain and discomfort we can manage with painkillers. We will be able to manage that pain much better than menstruation once a month, when Katie cannot tell us ‘I’m in pain.'”

So the solution is to put her through severe pain now to spare her cramping later? Can’t you give her painkillers once a month later, or Depo shots, or what have you? Something just seems sort of off to me with this whole thing.

I don’t want to minimize the burden that Allison Thorpe will have in caring for Katie over a lifetime, nor her awareness of Katie’s limited ability to comprehend and communicate that she’s in pain. However, given a range of alternatives, I can’t help but think that there’s a pretty big factor of not wanting to deal with the mess every month here.

The question, of course, is whether this decision will be for Katie’s benefit. And I just can’t say for sure, with such limited information. But I can say for sure that this case raises a lot of red flags for me. There’s also the issue of bodily autonomy, which is a particularly fraught subject in the disability-rights context, one that was argued with a great deal of intensity in the case of Ashley, a Seattle girl referred to as a “pillow angel,” whose growth was stunted surgically (which included the removal of her uterus and breast tissue so that they would not interfere with the hormone therapy or cause her discomfort) so that she could remain a size that would allow her parents to care for her at home and be able to transport her easily so she could be included in family activities. (For some perspectives on the ethics of this choice, see Blue and Planet of the Blind and Lindsay Beyerstein).

Thoughts?


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123 comments for “Is this a good enough reason? If not, what is?

  1. October 9, 2007 at 9:50 am

    I was diagnosed with cancer at 26 and had a hysterectomy shortly thereafter. I would prefer another 20 years of periods to that. The recovery period was a minimum of 6 weeks. If the teenage girl’s disability impedes her ability to walk, her recovery may likely take even longer. On top of the 6 weeks, I also had to have a suprapubic catheter (i.e., a tube of pee coming out of my abdomen and into a bag on my leg) because of some complications during surgery. As a result of that, I kept getting recurring infections and was eventually re-hospitalized because of infection and dehydration.

    Just as I cannot believe someone would put their bodies through lipos, boob jobs, nose jobs, etc., I cannot believe a mother would want to put her daughter through a MAJOR SURGERY (effectively, an amputation) when it is not medically necessary.

  2. Q Grrl
    October 9, 2007 at 9:55 am

    I think the disturbing precedent is the State’s interference in the girl’s bodily autonomy. This should be the mother’s choice, not the State’s. We might not like it, but it’s not for us to say what medical interventions are best in this situation.

  3. October 9, 2007 at 10:27 am

    This is going to be a minority opinion, I’m sure. A few years ago, I had a hysterectomy after decades of gut pain. It was one of the best decisions I ever made. I wish I had insisted on it twenty years earlier. My recovery was breathtakingly easy, and miles better than wishing I could cut myself in half for days on end every month.

    I don’t miss cramps or bleeding. I don’t miss fertility roulette. Don’t miss having to worry about this and that birth control method’s side effects. Don’t miss the expense of products and worrying about their occasional failure.

    In Alison Thorpe’s place, I’d order surgery for my disabled daughter in a heartbeat if I thought it would prevent one-tenth of what I suffered.

  4. October 9, 2007 at 10:40 am

    I think the disturbing precedent is the State’s interference in the girl’s bodily autonomy. This should be the mother’s choice, not the State’s. We might not like it, but it’s not for us to say what medical interventions are best in this situation.

    So wait… it’s an infringement on the girl’s bodily autonomy if the state decides not to mess with it, but it’s not an infringement if her mother decides to have her undergo surgery?

    This isn’t a perfect comparison, but is it an infringement on bodily autonomy if the state tells parents they can’t circumcise their daughters, even when those daughters are minors and even when circumcision comes with great benefits, like the ability to marry her off?

    Bodily autonomy is a complicated issue. But it definitely doesn’t mean that a parent has the right to do whatever they want to their kid’s body.

  5. October 9, 2007 at 10:44 am

    This is going to be a minority opinion, I’m sure. A few years ago, I had a hysterectomy after decades of gut pain. It was one of the best decisions I ever made. I wish I had insisted on it twenty years earlier. My recovery was breathtakingly easy, and miles better than wishing I could cut myself in half for days on end every month.

    If that were the case, this might be more reasonable. But as far as I can tell, Katie doesn’t have any complications beyond the normal cramping and headaches of menstruation. If she had a problem that would make menstruation horribly painful, then this would be a different situation.

  6. October 9, 2007 at 10:51 am

    Situations like this are very difficult to make a determination about without knowing all the facts. A young woman who is unable to express her own wishes in this sort of matter does, ultimately, have to rely on the decisions made by a guardian. And, honestly, it is possible that she has severe enough pain to make a hysterectomy an appropriate choice. (As for the Depo, there may be a history of clotting issues that would make that dangerous.)

    Of course, when such a dramatic and invasive procedure is involved, it would make sense to tread carefully. I think the ideal situation would be to have an ethics review board that consists not only of medical professionals but also of individuals with what are considered to be disabilities.

  7. October 9, 2007 at 11:03 am

    Thank you for the link to Planet of the Blind. Pleased to “meet” you.

    I hadn’t yet heard about this case. Unbelievable.

  8. Q Grrl
    October 9, 2007 at 11:09 am

    Well, that really conflates a lot of issues doesn’t it Jill.

    How would you feel if the State stepped in a said that a mother couldn’t make the decision to put her handicapped daughter on certain forms of birth control? What if the State says the mother can only give her daughter OTC pain relief b/c the State can’t determine if the daughter really warrents significant pain intervention (i.e, the mother can’t get a scrip for narcotics)?

    You seem to be assuming the State is capable of dissecting the ethical issues of this situation to a greater/better degree than the mother. That’s a stance that gives increadible power to the State. You also seem to come from a stance that merits a neutral starting ground for the State, void of politics and money.

    I don’t think this mother simply woke up one day and decided to cure her daughter through surgery – although that’s the underlying implication of this piece. If you read between the lines, and not all that closely either, zuzu (and you perhaps) are impling that the mother is acting from a curative stance, rather than the more humane palliative stance I credit the mother with being able to make – on her own.

  9. Q Grrl
    October 9, 2007 at 11:14 am

    To clarify: I’m not saying the decision shouldn’t reach the courts. I’m disagreeing that this should be a precedent setter for either side.

  10. October 9, 2007 at 11:28 am

    This case automatically revolts me much more than the whole “pillow angel” thing (revolting as that was), probably because I’ve known several people with cerebral palsy who were physically disabled to varying degrees but were mentally normal. Not to mention that I have two developmentally disabled cousins. So, first of all, I’d need a LOT of convincing that this girl is so developmentally disabled that she has absolutely no way of comprehending menstruation and no way of communicating pain or discomfort. After that, I’d need a whole lot more convincing that the only possible solution is invasive abdominal surgery with a high risk of complications, not to mention the future health problems that a hysterectomy can cause. Her mother does realize that she’ll have to give her estrogen pills for the rest of her life so she doesn’t get osteoporosis, right?

  11. Hector B.
    October 9, 2007 at 11:31 am

    I can’t help wondering if the mother is acting out of fear that her daughter will get pregnant. You can be disabled and still sexually active, obviously.

  12. iain
    October 9, 2007 at 11:32 am

    My reaction was similar to that of Mnemosyne: if Katie Thorpe suffers from CP, it should still be possible to find out what she wants. I can only assume that there are other problems as well.

    There’s a good piece on this case, with which I largely agree, here.

  13. October 9, 2007 at 11:38 am

    Yeah, I was actually with Lindsay on the Pillow Angel case, even though I can recognize the serious ethical concerns. There are lines and there is the slippery slope argument, but at the end of the day it should be about what’s best for the person living with the disability. In Ashley’s case, I could see the argument that the treatment was best for her. But here? Unless it can be demonstrated that she’s experiencing pain from menstruation and there are no other ways to halt that pain, then this just seems unnecessary.

  14. Ivy
    October 9, 2007 at 11:41 am

    I can understand (assuming the mother is genuine) where Ms. Thorpe is coming from, but a hysterectomy probably is not the answer. I do take issue with the State getting involved.

    Katie, unless she has incredibly severe CP, should be physically able to express her opinion on the matter, and her feelings should be heeded.

    There’s a considerable need for more information for anyone who is not her mother to have a particularly valid opinion on the matter, though.

  15. October 9, 2007 at 11:59 am

    I have know several people with CP, some with only physical disability (who were able to have families later in life) and some who were severly mentally disabled.

    It seemed to me that the mother was suggesting that the girl cannot understand what is happening to her. If you can imagine a 2year-old having the pain of a “normal” period, you can imagine the sort of terror and confusion this girl might be suffering every month.

    That being said, there are ways to eliminate periods without surgery.

    And THAT being said, as a mother of 3 healthy girls, I feel very uncomfortable judging parents who are caring for disabled children. The difficulty of that task is unfathomable to me, and I just have to assume that they do what they believe is best. Whether is truly “best” can be argued, but there is rarely a clear right or wrong answer. And like another commenter has mentioned, I feel very nervous when the State assumes responsibility for a child whose parents/loved ones are wililng and able to care for them.

  16. October 9, 2007 at 11:59 am

    I assume the mother means well, but a prophylactic hysterectomy is a very bad idea. I don’t think a uterus is essential, but elective surgery performed on non-consenting people is unacceptable. The mother’s long list of possible concerns included “embarrassment” which is a horrifically wrong reason for surgery.

  17. October 9, 2007 at 12:11 pm

    I’m not saying the decision shouldn’t reach the courts. I’m disagreeing that this should be a precedent setter for either side

    There’s a contradiction.

    Tata, I had a hysterectomy. I don’t see that it’s the best choice for everyone.

  18. kali
    October 9, 2007 at 12:38 pm

    Now I’m thinking about the Pillow Angel case, I’m wondering if I agreed with the interventions because “being small enough to be carried” seemed like such an obvious benefit for that girl, and all the interventions seemed to come as a package. The hysterectomy part seemed sort of worrisome to me even then, but I think those parents at least gave the justification that heavy, painful periods were a family trait.

    In this case, it’s just… ???? I don’t get it.

    I wonder what the reactions would be if he was a boy, and the mother wanted to castrate him, because he would find wet dreams and the mood swings and surges of aggression of puberty very confusing and alarming. Well, actually, I don’t have to wonder.

  19. Mnemosyne
    October 9, 2007 at 12:40 pm

    Here’s the other problem: at 15, she may not be menstruating yet, but she has almost certainly started going through the other hormonal changes of puberty. What are the consequences of suddenly halting that process?

    It’s also not clear — are we talking about just removing the uterus here, or are they going to take the ovaries as well? Because, as I said above, removing the ovaries in a pre-menopausal woman has consequences that need to be considered as well.

    Honestly, it doesn’t sound like a doctor has really sat down with her mother and gone through the entire idea with her. What’s worse, giving her painkillers every month or accidentally breaking her arm because her bones are so brittle? Giving her painkillers every month or seeing her get a blood clot in her lung because you’re giving estrogen pills to an immobilized person to prevent her bones from becoming so brittle that you can break her arm by turning her over?

  20. zuzu
    October 9, 2007 at 12:47 pm

    I can understand (assuming the mother is genuine) where Ms. Thorpe is coming from, but a hysterectomy probably is not the answer. I do take issue with the State getting involved.

    Well, this is happening in England, so presumably it’s the NHS that would be doing the surgery. So they’re going to have to make decisions on the ethical ramifications as well.

  21. kali
    October 9, 2007 at 12:59 pm

    I wonder what the reactions would be if he was a boy, and the mother wanted to castrate him, because he would find wet dreams and the mood swings and surges of aggression of puberty very confusing and alarming.

    Sorry to quote myself, but I was looking for this link in the Guardian comment section to include in the earlier post.
    The column is good, but the commenters… ack. These are the specific reactions I was wondering about: the “pain and indignity of menstruation” guy was annoying enough, but he pales beside the “how would the child of a disabled mother feel” person. Actually that latter one would probably be in favour of doing this even to a boy.

  22. Cooper
    October 9, 2007 at 1:10 pm

    This is utterly unacceptable. Disabled people deserve all the same rights as non-disabled people, including the right not to be forced to have dangerous and painful surgery to remove perfectly healthy organs.

    Katie is not in pain now, and there’s no reason to think she’ll experience anything but mild discomfort from her menses – most women do not experience severe menstrual pains. Her mother wants Katie to undergo an extremely painful major surgery and the years of health issues that go with it, so that she (her mother) doesn’t have to worry that her daughter might be experiencing painful periods. Whose well-being is this surgery really about? The road to hell is paved with good intentions.

    Finally, I think that anyone who’s not familiar with the systematic de-sexualization of disabled people should read some writings on the subject. A good start might be today’s NYTimes article about the lack of acceptance for gay seniors in nursing homes.

  23. October 9, 2007 at 1:16 pm

    Finally, I think that anyone who’s not familiar with the systematic de-sexualization of disabled people should read some writings on the subject.

    Eugenics was practiced in the U.S. as recently as ~ 30 years ago. I read one article recently, of a woman who didn’t know she’d been sterilized until she was an adult. Her sister had been an unwed mother, so their mother had the woman at hand sterilized as a child to avoid the same embarrassment. At the time, she claimed the girl was “feeble-minded” to have the doctor do it.

  24. October 9, 2007 at 1:17 pm

    I find it utterly mind-boggling that people are offended by the state getting involved in this. The state (or at least this is the ideal) is supposed to step in to protect marginalized and oppressed people from being harmed by people who are acting out of prejudice.
    A young woman at risk of have her body mutilated because a pwd having periods is considered unseemly (or to use Ms. Thorpe’s words “undignified”) is just such a circumstance.

  25. Q Grrl
    October 9, 2007 at 1:49 pm

    Cooper: do you have other news source? How do you know the girl isn’t in pain right now? Are you better able to assess this than the girl’s mother?

    Annalouise: do you have a link to where Ms. Thorpe mentions dignity?

    I do see where she mentions that her daughter is incapable of telling her when she is in pain. If the child can’t communicate with her mother, how can she communicate with the State?

    Can 15-year-old’s in the UK consent for their own surgery?

  26. Sally
    October 9, 2007 at 2:59 pm

    I find it utterly mind-boggling that people are offended by the state getting involved in this. The state (or at least this is the ideal) is supposed to step in to protect marginalized and oppressed people from being harmed by people who are acting out of prejudice.

    Well that, and also the fact that feminists fought like hell against a world view that said that the justice system shouldn’t intervene in cases of domestic violence, because it was inappropriate for the state to get involved in “private” family affairs. The idea that parents have a right to control their children’s bodies, free from state interference, is patriarchal in the literal sense of the term. It just substitutes all parents for the father who traditionally controlled his household and mediated between its individual members and the state. It is precisely the argument that was made to justify why parents would know better than the courts what methods were necessary to make an unruly child respect authority. I mean, who are we to assume that the parents haven’t thought through the ethical implications of locking little Susie in the closet when she talks back or doesn’t do her chores properly?

    State power is always problematic and threatening. It can always be abused. But the alternative is to accept that children are their parents’ property, and I think there’s plenty of evidence that that’s worse. We’ve got thousands of years of experience to show that parents sometimes harm their children when there’s no check on their authority over their children’s bodies and lives. Of course there’s always the potential for the state to intervene when it shouldn’t, but that’s not an excuse to ignore or brush aside any particular case of potential child abuse.

  27. piny
    October 9, 2007 at 3:05 pm

    Well, that really conflates a lot of issues doesn’t it Jill.

    How would you feel if the State stepped in a said that a mother couldn’t make the decision to put her handicapped daughter on certain forms of birth control? What if the State says the mother can only give her daughter OTC pain relief b/c the State can’t determine if the daughter really warrents significant pain intervention (i.e, the mother can’t get a scrip for narcotics)?

    You seem to be assuming the State is capable of dissecting the ethical issues of this situation to a greater/better degree than the mother. That’s a stance that gives increadible power to the State. You also seem to come from a stance that merits a neutral starting ground for the State, void of politics and money.

    I don’t think this mother simply woke up one day and decided to cure her daughter through surgery – although that’s the underlying implication of this piece. If you read between the lines, and not all that closely either, zuzu (and you perhaps) are impling that the mother is acting from a curative stance, rather than the more humane palliative stance I credit the mother with being able to make – on her own.

    I don’t think that she is conflating these issues. I think that she is comparing them, and that the comparison is just. We agree that there is this thing called misogyny, and that it prevents many parents–about half of them mothers–from working for the best interests of their children. Many of us therefore believe that the State should prevent parental action on their children’s bodies and intervention in their medical decisions. This reasoning holds true for clitoridectomy and for reproductive autonomy.

    So I don’t think it’s unreasonable or sexist to say that there is this thing called ableism, or that parents also feel it, or that the State should sometimes prevent parental action on the bodies of their disabled children. It is undeniable that disabled people have less bodily and medical autonomy. It is undeniable that there is less concern at every step over their dignity and their quality of life. It is also undeniable that disabled women in particular suffer from a combination of ableism and sexism.

    This woman is balancing a normal bodily process against an irreversible surgery that has plenty of side effects of its own–while there are other ways to prevent both the period and any associated pain. This young woman’s toiletting is not my responsibility, but I don’t think this is the best solution.

    You have never argued before that precedents like this were something that a community could simply choose to ignore. This case, like the other case, could very well normalize “palliative” hysterectomies for disabled women, minor and adult.

  28. Liz
    October 9, 2007 at 3:11 pm

    I hate to say it, but the odds that she will be out of her mother’s care, and vulnerable to sexual assault (at some point) are very very good. Whether the girl is in the hospital for something, or her mother can no longer care for her, the mother cannot plan on constant supervision forever. There are people out there who prey on girls like this.

    And this is even worse, but there are more options for group care for non-fertile women. A hysterectomy, preventing menstruation, probably opens up even more doors.

    There. I said it. It’s horrible, but true.

  29. Sally
    October 9, 2007 at 3:11 pm

    Annalouise: do you have a link to where Ms. Thorpe mentions dignity?

    From the Times

    She told The Sunday Times: “Katie has an undignified enough life without the added indignity of menstruation. She will not understand what is happening to her body and it could be very frightening for her.

    “Katie would be totally confused by menstruation. She could not manage it by herself. She could not keep it discreet; she cannot be private.”

    I’m genuinely confused by this. Isn’t Katie, who doesn’t walk or do any other weight-bearing exercise, already at increased risk for osteoporosis, which would be made worse by this? And as other people have mentioned, aren’t hysterectomies pretty painful? And I have pretty awful periods, but they’re definitely controllable with drugs. I know that Katie can’t talk, but is she really so non-communicative that her caregivers would have no idea that she was in distress at the same time of her cycle every month? I’m just hard-pressed to believe that there was any doctor who would consent to this procedure. What on earth am I missing here?

  30. piny
    October 9, 2007 at 3:13 pm

    I do see where she mentions that her daughter is incapable of telling her when she is in pain. If the child can’t communicate with her mother, how can she communicate with the State?

    If the mother can’t communicate with the child, how can she decide that her cramps are horrible enough to justify a hysterectomy?

    This is a problematic stance to take with regards to disabled advocacy. Historically, the state has not acted to protect disabled people from interference, especially not by their parents. Rather, disabled people have been denied the right to advocate for themselves, even in cases where they were capable, and those decisions have been given over to the adults around them.

  31. Sally
    October 9, 2007 at 3:13 pm

    Oops. That last bit shouldn’t be a blockquote.

  32. Megan
    October 9, 2007 at 3:25 pm

    I wonder what the reactions would be if he was a boy, and the mother wanted to castrate him, because he would find wet dreams and the mood swings and surges of aggression of puberty very confusing and alarming. Well, actually, I don’t have to wonder.

    Kali, you totally hit the nail on the head– this is exactly what I was wondering as I read the stories about this case and people’s reactions to it… there is just this assumption that menstruating is a horribly painful, disgustingly messy, frightening and incomprehensible thing, causing incapicitating mood swings. Since she hasn’t even started menstruating yet, why the hell are we presuming she is going to have debilitating periods?? It’s like it is assumed that being a mentsruating woman automatically lowers one’s quality of life, significantly. The misogyny running through this case is disturbing. Applying this decision to a male really brings it to light.

  33. Q Grrl
    October 9, 2007 at 3:30 pm

    If the mother can’t communicate with the child, how can she decide that her cramps are horrible enough to justify a hysterectomy?

    How about 15 years of experience being her primary care giver?
    I would say that is a long enough time to aquaint onesself with an individual’s capacity to handle pain, handle the stress of pain, and handle the additional incapacities of menstruation (for a disabled individual).

    From my point of view, secondary to the girl herself, the mother is the most qualified to make this decision. For all we know, the State’s stance could be the more detrimental, assuming the State is against the hysterectomy.

  34. Q Grrl
    October 9, 2007 at 3:40 pm

    Thanks Sally, I missed those links earlier. Maybe she’s concerned that her daughter will freak out about the bleeding, barring any meaningful way of explaining this to the child. That would scare me, personally.

    Piny, you say:

    This case, like the other case, could very well normalize “palliative” hysterectomies for disabled women, minor and adult.

    In a way that sex change operations don’t, with their emphasis on a mental health disability-physical body premise? I don’t see why this can’t be a case-by-case choice, mostly because I don’t like the State getting closer and closer to determining what women (and their children) are allowed to choose and do.

  35. piny
    October 9, 2007 at 3:52 pm

    She herself said that her daughter couldn’t communicate pain. She also has never seen her daughter go through a period; she has no idea what it will be like, let alone how her daughter will react to it. She cannot predict things like the severity of her daughter’s cramps.

    In a way that sex change operations don’t, with their emphasis on a mental health disability-physical body premise? I don’t see why this can’t be a case-by-case choice, mostly because I don’t like the State getting closer and closer to determining what women (and their children) are allowed to choose and do.

    Yes, absolutely. In the case of sex-change operations, we’re talking about a group of people who do have autonomy, who are consenting adults, and who have to fight for a procedure that otherwise would be denied to them. For those reasons, it is unlikely that sex-change surgery will ever occupy a similar position. None of that is true here.

    You are the one saying that we can’t evaluate this case on its merits, that it is improper to see a hysterectomy as kinda extreme. That’s not a case by case basis; that’s a presumption in favor of the parent.

  36. October 9, 2007 at 4:03 pm

    I talked about this in my blog a little last night and made the wet dream comparision myself. The bottom line is we wouldn’t do this to a boy even though castration is a less serious operation with less serious potential complications and side effects.

  37. Q Grrl
    October 9, 2007 at 4:12 pm

    You are the one saying that we can’t evaluate this case on its merits, that it is improper to see a hysterectomy as kinda extreme.

    I have? Where?

    I think a hysterectomy is extremely extreme. And we don’t know enough about the case’s merits to assume that the mother is acting in bad faith or that she can’t predict, after 15 years of care, how her own daughter might react to menstruation. I’m saying we need to know more before we assume the State has a right to deny this surgery.

    In the case of sex-change operations, we’re talking about a group of people who do have autonomy, who are consenting adults, and who have to fight for a procedure that otherwise would be denied to them. For those reasons, it is unlikely that sex-change surgery will ever occupy a similar position.

    From one perspective, yes. Absolutely. From another, you are promoting the use of surgical removal of sex organs to enhance quality of life. Why is that good for one camp and not others? Whose decision is that to make?

    Certainly this hinges on the girl’s current and perpetual dependence upon caregivers to make quality of life decisions for her throughout her lifetime. Those making these decisions should be scrutinized for the why’s and what-for’s.

    Would we be feeling differently if the mother was asking for a palliative appendectomy, given the slight risk the child has of appendicitis and the child’s inability to verbally communicate pain? Do the issues carry over, or are they specific because this is a hysterectomy and progressive bloggers are still getting caught up in the autonomous-woman-being-the-sum-of-her-autonomous-womb meme?

  38. Q Grrl
    October 9, 2007 at 4:17 pm

    Miss Sophie: no offense, women/girls are capable of making decisions for themselves without any male standards. Men are not the litmus test.

  39. piny
    October 9, 2007 at 4:40 pm

    I think a hysterectomy is extremely extreme. And we don’t know enough about the case’s merits to assume that the mother is acting in bad faith or that she can’t predict, after 15 years of care, how her own daughter might react to menstruation. I’m saying we need to know more before we assume the State has a right to deny this surgery.

    Okay, but that’s different from saying that the mother must know best, which is what you’ve been doing. I don’t assumme that she’s acting in bad faith. I suspect that she is mistaken.

    From one perspective, yes. Absolutely. From another, you are promoting the use of surgical removal of sex organs to enhance quality of life. Why is that good for one camp and not others? Whose decision is that to make?

    Removal of organs to enhance quality of life? This category is far too broad to be tenable. Would you like me to defend emergency appendectomies? Hysterectomies in post-menopausal non-disabled women with cancer? My great-aunt Miriam’s gall bladder surgery? I do not advocate sex-change surgery in that sense; that’s like calling someone pro-abortion. I just explained why an adult choosing sex-change surgery for hirself is a different and, I think, far less worrisome situation than a minor undergoing a hysterectomy at the behest of her parent.

    Would we be feeling differently if the mother was asking for a palliative appendectomy, given the slight risk the child has of appendicitis and the child’s inability to verbally communicate pain? Do the issues carry over, or are they specific because this is a hysterectomy and progressive bloggers are still getting caught up in the autonomous-woman-being-the-sum-of-her-autonomous-womb meme?

    Some of them, probably. Others, definitely not. Your appendix doesn’t actually do all that much in your body, whereas your uterus is a major player, particularly if you’re about to start menstruating. Your appendix can also become infected and kill you; it is less likely that a young woman’s uterus would do anything similar. Cramps are nothing like peritonitis.

    Also, there’s a huge disparity in reproductive cachet between disabled and non-disabled women; maternity with disability is a popular contradiction in terms. That makes it difficult to just fold this into anxiety over women’s reproductive systems; for disabled women, the womb is not generally granted metonymic status.

  40. Mnemosyne
    October 9, 2007 at 4:49 pm

    From another, you are promoting the use of surgical removal of sex organs to enhance quality of life. Why is that good for one camp and not others?

    Because one camp is consenting adults who have made their own decision, and the other camp is disabled people who are having decisions made on their behalf.

    Whose decision is that to make?

    The adult whose body it is. Why is it so hard for you to understand the difference between making a decision for yourself and making a decision for someone else.

    I am sympathetic to the mother, but the mother is not and should not be allowed to make unilateral decisions about whether or not to remove her daughter’s uterus and ovaries without there being some kind of check. Even in the Ashley case, her parents went through a lengthy process with an ethics board before they were allowed to move forward. Where is the ethics board hearing in this case? Or is the idea that a disabled woman should automatically have her uterus removed so automatic that there isn’t really a need to debate the ethics of it?

  41. Thealogian
    October 9, 2007 at 4:50 pm

    If she were at a State-run institution, then I’d be seriously disturbed by this, but she is in the care of her mother. I think that when these matters get undue media attention, we can speculate and consider how we’d handle our obligations, but we can’t know. (Nor do we know all of the details). My family is friends with the families of two severely mentally retarded young women. Caring for them, as both families do in the home, is a commitment (and burden) that I cannot fathom. At least one of the mothers is now approaching 80. What these caretakers (more often than not mothers) see as their best options are their best options. Interfering in that (unless you are willing to take on the full care-taker role in their stead) is cruel. Because this is concerning a reproductive organ/function, we feminist get (for very good reasons) nervous about precedent. I get that! I think, though, that arguing about the complications of our own menstrual cycles (or pleasures) is not really the main thing we should talk about. I think that this is a matter of the Care Crisis! Why do some feel that it is necessary to alter their daughters bodies to care for them–BECAUSE THEY ARE 100% RESPONSIBLE FOR THEIR CARE

  42. Mnemosyne
    October 9, 2007 at 4:52 pm

    There. I said it. It’s horrible, but true.

    Here’s an even more horrible thought, Liz — by removing her uterus and making her infertile, you’re lessening the chances that sexual abuse could be detected through a pregnancy or pelvic exam (since if you have no uterus and no periods, no need for a pelvic), making her even more of a target and ensuring that the abuse continues on indefinitely since the perpetrators have only a minuscule chance of being caught.

    How’s that for a nightmare scenario?

  43. Megan
    October 9, 2007 at 4:55 pm

    Miss Sophie: no offense, women/girls are capable of making decisions for themselves without any male standards. Men are not the litmus test.

    Well, men are a very handy litmus test, actually, especially if you are comparing a hysterectomy to an appendectomy. In what universe is a woman’s womb as dispensible as her appendix?? In this patriarchal society, it seems that only by putting this in terms of “castration” can some people see the serious (as well as deeply misogynist and ableist) nature of this proposed procedure.

  44. Q Grrl
    October 9, 2007 at 5:15 pm

    In what universe is a woman’s womb as dispensible as her appendix??

    Well, apparently in the adult world of sex-change operations they are!

    Just kidding, just kidding!

    I think you missed my point about the appendix. I’m comparing women’s parts to women’s parts, not men’s parts to women’s parts. Which is the point. No where do we need the specter of castration to be the litmus test for the complexities of women’s bodies. We can form our own ethics all by ourselves, no dick needed!

  45. Interrobang
    October 9, 2007 at 5:45 pm

    Speaking as someone who does have cerebral palsy, it’s likely she does have more severe periods than usual, particularly if she has either the spastic or athetoid forms of the syndrome. I have spasticity, and I know my periods are often violent enough to put me on my back for two or three days. Hysterectomy looks pretty freakin’ good some of the time.

    I don’t think anyone has all the facts here, but that is something to consider. There are already enough other things to deal with that happen to most people with CP (gastric reflux disease, increased risk of pneumonia/bronchitis, GI motility problems, increased risk of fungal infections, increased risk of UTIs, to name five off the top) — I have all of those things, and I’m a relatively healthy, comparatively able-bodied person.

  46. October 9, 2007 at 5:55 pm

    I think that when these matters get undue media attention, we can speculate and consider how we’d handle our obligations, but we can’t know.

    The hell I don’t! Speak for yourself!

    This is an ABOMINATION.

    Also, where are the people with CP in this thread? Interrobang is the first one, yes? Where are the other people who identify as disabled? I see the same “I knew someone who’s second cousin’s boyfriend had CP, so I know all about it” as I did during that Ashley X debacle. Have we driven them all away, and they no longer feel comfortable commenting?

    So, we are all here opining about what to do with a class of people, as oppressors always do. The people under discussion are pointedly not sharing their opinions here, and I think it might be good to ask why. If it isn’t obvious already.

  47. Kristen from MA
    October 9, 2007 at 5:58 pm

    i don’t understand why the woman says her daughter ‘wouldn’t understand’ what’s going on. cerebral palsy is a movement disorder, not a form of mental retardation.

    it’s amazing to me that any court would consider this issue for someone who is not mentally impaired, whether she’s a minor or not.

  48. Vinegar
    October 9, 2007 at 6:12 pm

    Have we driven them all away, and they no longer feel comfortable commenting?

    I doubt there are many to begin with.

  49. AK
    October 9, 2007 at 6:18 pm

    Apologies if this has already been brought up (I intend to read this in more detail when I’m not at work) but: even with a hysterectomy, aren’t there going to be other things that need to be done? Hormone replacement and whatnot? I mean, you can’t just take the uterus out of an otherwise “normal” 15 year old and expect everything to still work right. Is this even a consideration here? How will this effect any other bodily functions, or the quality of her later life?

  50. Sailorman
    October 9, 2007 at 7:01 pm

    # Jill Says:
    October 9th, 2007 at 11:38 am
    Unless it can be demonstrated that she’s experiencing pain from menstruation and there are no other ways to halt that pain, then this just seems unnecessary.

    Isn’t there another criteria before that “then?”
    I’d suggest:

    …and those “other ways to halt the pain” (whether mental or physical) are, in the long run, as or more predictable than a hysterectomy and also have a better cost/benefit ratio. (though, since we don’t know exactly what the effects will be, “pain” may be a bad word.)

    IOW, just because something is “major” or “very painful” in the short run (e.g. surgery) does not mean that it’s a worse option in the long run. And as most of us who have bought insurance are aware, there’s often an intangible benefit of a known quantity over an unknown quantity.

    I agree with most posters that the State should have some review here, but I also agree with Q Grrl insofar as the State should not be assumed to be neutral and/or competent.

  51. October 9, 2007 at 7:43 pm

    I don’t think unnecessary surgeries (not medically required) should be done on minors regardless of whether the minor is disabled or abled.

  52. Kat
    October 9, 2007 at 9:02 pm

    Some time back I came across an article about a concept called “the dignity of risk”. I blogged a little about it here. One quote from the article that struck me was this:

    In the past, we found clever ways to build avoidance of risk into the lives or persons living with disabilities. Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk taking… and there can be crippling indignity in safety.

    As a primary caregiver to any child you have a duty to protect your charge. The weight of this responsibility can be enormous when the child is disabled and less able to care for themselves and therefore more vulnerable to victimization. Many of these kids will not “age out” of the need for care. These parents must look ahead to what will happen to these kids once they themselves are unable to care for them. The tendency can be, albeit with good intentions, to wrap the child in a bit of a bubble. Thus inadvertantly depriving them of their rights.

    Katie’s mom, her primary caretaker, is likely doing what she thinks is best to protect her daugther from pain and suffering. I think the undertone of this drastic move is less about menstruation discomfort and more about the risk of sexual assault and victimization. Much of the abuse that occurs in institutional settings happens during the process of toileting and her mother may feel she will reduce this risk if she reduces the need for toileting assistance.

    All of which says to me that Katie’s mother’s request may be less about her actual desire to subject her daughter to major surgery and more a cry for help from a woman frustrated with a system that is not giving the family the support they need (the fact that they have limited communication with a child with a physical and not cognitive disability may indicate that the family is lacking appropriate accommodations/therapies for her).

    The travesty here is that the family has reached this level of frustration and even desperation. Where are the social supports that are offering better, more ethical options?

  53. kali
    October 9, 2007 at 10:23 pm

    Just to clear something up, she does have learning difficulties, even though obviously not everyone with CP does. I’d be feeling pretty weird if I had CP and I was looking at the news stories, which all seem to specify Katie’s problem simply as CP without additionally specifying she has learning difficulties. I’d feel like that was bound to confuse people, either about the nature of CP or about the legal rights of mentally competent people with disabilities.

  54. October 9, 2007 at 10:47 pm

    Also, where are the people with CP in this thread?

    Personally, I posted over at my own spot. But I’m here now. Hi.

    This is shocking, appalling, and revolting. This kind of thing IS NOT OKAY.

  55. October 9, 2007 at 10:48 pm

    I doubt there are many to begin with.

    What is that supposed to mean? We’re not all that rare… and the majority of us, in case you didn’t know, are not cognitively impaired in any way.

  56. October 9, 2007 at 10:50 pm

    I’d be feeling pretty weird if I had CP and I was looking at the news stories, which all seem to specify Katie’s problem simply as CP without additionally specifying she has learning difficulties. I’d feel like that was bound to confuse people, either about the nature of CP or about the legal rights of mentally competent people with disabilities.

    Right on.

  57. October 9, 2007 at 10:58 pm

    I think the undertone of this drastic move is less about menstruation discomfort and more about the risk of sexual assault and victimization.

    Personally, I think that this kind of thing comes from fear of adult disabled bodies. I think that able-bodied people often deal with us by infantilizing us, by seeing us as eternal children, innocent and loving and blah de blah, and the idea of us with mature, sexual bodies is a threat to that. They can handle cleaning our piss and our shit, because those come out of babies. But when it’s our blood, our vaginal discharge, semen from the males — it shatters that bubble of the innocent eternal child. It’s threatening. It’s threatening that we might even have sexualities or sexual desires or feelings at all, if our bodies or minds are sufficiently different from the paradigmatic body/mind. Sexual maturity is something that’s only accorded to certain people. That’s what all this says to me.

    I’m not asserting that this is the only reason the mother would want this. I’m sure she has a network of motivations. But this is a big thing people need to think and talk about.

  58. zuzu
    October 9, 2007 at 11:24 pm

    Trin, I tend to agree with you about the mess being an issue, which is why I’m really surprised that other, less-invasive alternatives haven’t been tried.

    I mean, I can see that menstruation may be a big issue with pain, as Interrobang said. Okay, well, maybe there are some hormonal therapies that will help, or uterine cauterization, which will both sterilize her and leave her with no periods, yet leave the uterus intact.. And if pregnancy is a concern what with institutionalization, then that helps as well. Rape? Removing her uterus isn’t going to help that at all.

    I do think it’s a legitimate concern that someone who can’t communicate might be subject to sexual assault in an institution and be unable to communicate that fact — the thing is, I doubt that hysterectomy is going to do anything in that event but prevent pregnancy in the event of sexual assault, and hysterectomy has its own set of issues.

  59. blix
    October 9, 2007 at 11:30 pm

    Katie, the girl in question, is doubly incontinent and cannot walk or talk. She has the mental age of an 18-month-old. She requires 24-hour care.

    Now, if you are willing to devote the rest of your life to helping this mother with bathing, feeding, changing diapers, and loving this crippled, severely retarded young woman, then maybe you have a right to an opinion. Otherwise, you might consider shutting TFU.

  60. October 9, 2007 at 11:44 pm

    Now, if you are willing to devote the rest of your life to helping this mother with bathing, feeding, changing diapers, and loving this crippled, severely retarded young woman, then maybe you have a right to an opinion. Otherwise, you might consider shutting TFU.

    Have you ever been bedridden? If not, if you’ve never been dependent on others’ good will and respect for your autonomy in damn near everything… maybe there’s more for you to consider as well.

  61. Jacqui
    October 10, 2007 at 12:01 am

    Hi, I came accross your site because it is listed on the university update page for cerebral palsy. There does seem to be a perception by the commentors of what the child’s life is like. I suggest that people look at their own perceptions by reading about Anne McDonald – http://home.vicnet.net.au/~dealcc/Anne2.htm and her article printed here – http://seattlepi.nwsource.com/opinion/319702_noangel17.html .

  62. October 10, 2007 at 12:08 am

    The first thing we all need to consider is that the parents have been royally fucked over by the system. Our society has defaulted in every way when it comes to dealing with the disabled and their caregivers. We’ve said to these families: you are on your own. We don’t consider your issues important or worth our taxes or our attention. Basically, it’s fuck you and the disability you rode in on.

    Given that, it is altogether tempting to give the caregivers the benefit of the doubt. And maybe we should. Since we have told these caregivers to suck it up and deal with it, perhaps we should be required to accept whatever decisions the caregivers make.

    But … it is individuals like Ashley and Katie who can show us the folly of our actions.

    Perhaps they can show us the way we can choose another option. Perhaps we can say, yes, we fucked up by making caregivers responsible for the lives of a disabled human being. Perhaps we can say, yes, we fucked up by refusing to support you in your struggles. Perhaps we can say that, yes, we need to offer you caregivers more than the worst case scenario.

    It is true that if we say that Ashley and Katie ought to have more choices, then we also have to recognize our own failure in providing them the simple basic support we believe is due to every individual.

  63. October 10, 2007 at 12:13 am

    ince we have told these caregivers to suck it up and deal with it, perhaps we should be required to accept whatever decisions the caregivers make.

    I don’t get this… we’re supposed to accept the violation of people because other people were harmed? How is that any different from saying that an abuser was abused himself, so what he does to his wife is regrettable but excusable?

    Yes, we do need to provide more resources for carers. Yes, yes, yes, yes, yes, yes, yes.

    But that doesn’t make violating people’s bodies permissible.

  64. October 10, 2007 at 12:19 am

    Trin, I agree with you. I wasn’t clear. I am saying we have fucked over the caregivers AND we have fucked over the disabled.

    Admitting we have fucked over the caregivers does NOT give us the right to fuck over the disabled.

    I am deeply sorry if that was not clear.

  65. October 10, 2007 at 12:23 am

    and loving this crippled, severely retarded young woman

    By the way — the way you’re using crippled there — well, you didn’t quite call her “a cripple”, but the way you’re using the term here is so close to the slur that I’m really disturbed by it. Putting my anger at your general comment aside for a moment: really, that’s just not okay.

  66. October 10, 2007 at 12:28 am

    Raven: Thank you. And I agree. We do need to acknowledge the way caregivers get fucked over, not supported, etc. Which comes directly from devaluing us: if we’re barely human, who cares about those who do so much work to help us/allow us to live? It’s all the same problem.

  67. October 10, 2007 at 1:30 am

    and by the way

    “cannot walk or talk” != “cannot move around/cannot communicate”

    While this is of course a severe case, we need to not throw these things around like they are the ends of the world.

    I’ve been non-ambulatory for periods of time. Not walking is nowhere near the pitiful deprived hell that many people who have never used chairs make it out to be. Please be careful when talking about this woman’s physical limitations not to slip into projecting meanings to things like walking or speaking vocally, or the lack of them, that they don’t actually have.

  68. October 10, 2007 at 1:43 am

    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.

  69. piny
    October 10, 2007 at 4:39 am

    I think you missed my point about the appendix. I’m comparing women’s parts to women’s parts, not men’s parts to women’s parts. Which is the point. No where do we need the specter of castration to be the litmus test for the complexities of women’s bodies. We can form our own ethics all by ourselves, no dick needed!

    This is a lousy argument. First of all, “for themselves” is very different than “for each other.” This is especially true if you’re talking not only about sexism but disability. Second, I think male and female reproductive organs are a hell of a lot more analagous than female reproductive organs and a largely-superfluous, occasionally-lethal part of a female body. It’s perfectly reasonable to look at disparities between social reactions to male and female sterilization, particularly if you’re talking about sexism.

  70. October 10, 2007 at 7:57 am

    I identify as a proud, disabled person but find it hard to comment as an individual (v. a collective) in these kind of forums because my identity, personhood, way of life is constantly attacked and people never seem to get my point anyways.

    My first question is for all the people who sympathize with the caregivers—why aren’t you advocating for an end to the institutional bias? Why do you put the blame on the individual or the disability when we have a system that could easily provide home-based care for disabled people but instead choose to institutionalize [put them in nursing homes] when many people do not need institutional-level care? Obviously if we’d rather overpay for someone to have 24 hour care when they only need, let’s say, 10 hours, so that we can deny them the right to live in their home, we need to rethink our society’s patronizing/ableist views of disability.

    Disabled people are HERE (yes, as in alive on this earth!) and AGAINST this. It shouldn’t matter if the person has a physical disability, cognitive disability, learning disability, whatever, all people have the right to live in the community and society should support that right instead of condeming the disabled person and putting them as the burden. With these sorts of attitudes, it should be no surprise that it’s totally acceptable to abort babies if they have disabilities or to brutally murder disabled people. These ableist concepts of disability literally kill disabled people every day.

    Check out http://www.fridanow.blogspot.com for the feminist disability response to Katie Thorpe.

  71. Q Grrl
    October 10, 2007 at 9:46 am

    It’s perfectly reasonable to look at disparities between social reactions to male and female sterilization, particularly if you’re talking about sexism.

    So true. When it happens. Upthread it was used as a stick to keep posters in line.

  72. October 10, 2007 at 9:51 am

    These ableist concepts of disability literally kill disabled people every day.

    Yes. Thank you.

  73. October 10, 2007 at 11:10 am

    I find it’s always revealing in conversations like this to really ponder who we choose to empathize with, who we put ourselves in the place of, and why.
    I don’t think I really ever got the concept of white privilege on and inuititive level until I was watching some news story about (white) cops killing a young (black) man and I realized that my first instinct and the first instinct of those around me was to think of how terrible it would be were I one of those cops and had kill an innocent person. I, as a young white woman, didn’t fear police violence and so I didn’t first empathize with the victim.
    I wonder that with the people who put themselves in the place of Jack Baur character in some unrealisitc “we must torture” scenario where there’s a bomb somewhere and waterboarding is the only way to find it. They must not ever have the fear that the government will take them away and torture them and cannot empathize with that fear.
    I wonder that about all the people who only empathize with Allison Thorpe. The fear of having to be a caregiver to a person with disabilities and not have the support system that you need is a real one and worth empathizing with.
    But what about empathizing for a second with Katie Thorpe? What about empathizing with the idea of being unable to communicate (which, does not, by the way, mean unable to think or understand) and having your body mutilated without your consent? Doesn’t that horrorify people more?

  74. Kat
    October 10, 2007 at 11:55 am

    Personally, I think that this kind of thing comes from fear of adult disabled bodies.

    Yes, I agree with this. This is a definite possibility. I’ve also known parents that hold back progress (maybe subconciously) because their entire sense of self becomes wrapped up in their child’s need for them.

    Our society has defaulted in every way when it comes to dealing with the disabled and their caregivers.

    Yes. At the end of the day, a hysterectomy seems like such an extreme way to come to the desired end result. Surely there are better, less permanent, less evasive options.

    I cannot help but think that on so many levels this family has been left with very little real social services support. It has put Katie in a very precarious situation.

    Sadly, this is the norm among many families dealing with disabled family members.

  75. Hector B.
    October 10, 2007 at 12:06 pm

    After pondering this for a while, I have two questions:
    1. Why are UK social services not helping the mother care for her daughter? I have always naively thought of the UK as a “welfare state.”
    2. If parents of the disabled want their kids to undergo unnecessary surgery to make caring for them easier, because the parents are solely responsible for their care (as in the Ashley case), what will the parents do when they get too old to care for their children? A quick smother with a pillow?

  76. Mnemosyne
    October 10, 2007 at 12:33 pm

    The travesty here is that the family has reached this level of frustration and even desperation. Where are the social supports that are offering better, more ethical options?

    Yep. All of the same oh-so-compassionate people who argue in favor of fetal rights are the first ones to say, “Well, you decided to have a disabled child, so you figure out how to care for it.”

    We really, really, really need better (and better-funded) services for the disabled and their families throughout their entire lives. The services that a five-year-old needs and the services that a 25-year-old needs are not the same.

  77. October 10, 2007 at 12:39 pm

    I find it’s always revealing in conversations like this to really ponder who we choose to empathize with, who we put ourselves in the place of, and why.

    This is an interesting point. I suspect that part of the sympathy with the care-givers that we see on feminist blogs comes from the fact that most care-givers for children, the elderly, and the disabled are women. I know my mother and her sisters worried more about my grandma’s care more than my uncle did; it was my aunt who ended up retiring to care for her full-time. So I think when many of us think of care-givers, we think of ourselves or the women we know who are primarily responsible for elder care and child care.

    And I think that’s another reason that the institutional support isn’t there — both because society doesn’t really give a shit about disabled people, and because care work can be outsourced to an unpaid or under-paid female workforce.

    All that said, though, the “burden” of caring for someone else does not mean that the care-giver has full rights over that other person’s body. A mother shouldn’t be able to remove her disabled daughter’s uterus because menstruation will potentially hurt or scare her any more than a mother should be able to remove her able-bodied daughter’s uterus for the same reason.

    Trin above pointed out that a lot of this comes from the fear of adult, and particularly sexual, disabled bodies. I think that’s spot-on. Even in reading anti-choice arguments against terminating pregnancies where the potential baby will have Downs syndrome, you see a lot of comments about how Downs kids are just the sweetest and most joyful and best children ever. It’s pretty disturbing how they’re made into these perfect perma-children who are just smiley and sweet and not like normal children with their crying and their brattiness. And that’s from people who claim to support disability rights when it suits their anti-choice goals.

    Also, the fact that the discussion is about removing this girl’s reproductive capacity is relevant. It’s more relevant than an appendix or a kidney precisely because of the history of eugenics and desexualization of disabled people. The freedom to control one’s sexuality is a major indicator of privilege and access to human rights. Even in a non-disability context, look at whose reproductive rights have been challenged with the greatest ferocity — women in general, but women of color in particular. Removing the reproductive capacities of disabled women is even more acceptable.

    The whole thing is troubling from all angles — disability rights, human rights, and women’s rights.

  78. Karna
    October 10, 2007 at 12:56 pm

    I see in so many comments something I thought that a goal of feminism was to prevent-people telling mothers that they don’t know how to care for their own children, that they are “misguided”. I understand the issue with regards to disabled rights, so I guess my question is how do we reconcile that with feminism, with trusting women?

  79. AmberFRIDA
    October 10, 2007 at 12:59 pm

    I’d like to point out that one reason you’re not seeing more people with disabilities posting on this topic is because vast numbers of us are poor and do not have access to computers, not only because we can’t pay for them but because we can’t even get to them if we can’t afford extra paratransit trips to get to public computers. Hell, the docs won’t let a lot of us out of nursing homes and institutions. Who gives a crap about the Internet if we can’t get in-home services to get us out of bed in our own homes?

    In addition, tons of people with disabilities out there have reading and writing and mobility issues, which denies us access to the Internet. Those of us who do have Internet access do what we can to raise awareness on the issues affecting us all, and many of us who are able to actually work at places that are trying to train people with disabilities of all stripes to use the Internet.

    Our discussion is therefore limited to those of us who actually have the privilege to make it here. Be aware of it.

    I would also like to support those who have been saying we need to consider the Katie Thorpe case from the disabled person’s point of view, impossible as it may be to actually determine Katie’s own viewpoint. If you do nothing else today, spend some time thinking about what it’s like to be a person whose body other people feel it’s okay to alter or edit because it’s too creepy or undignified or too much work.

  80. October 10, 2007 at 1:09 pm

    I see in so many comments something I thought that a goal of feminism was to prevent-people telling mothers that they don’t know how to care for their own children, that they are “misguided”. I understand the issue with regards to disabled rights, so I guess my question is how do we reconcile that with feminism, with trusting women?

    I think we recognize that women are human, too, and that we are also subject to various levels of privilege and oppression. We trust women to make their own reproductive choices, but we don’t give anyone full rights over another person’s body.

    And while we do give parents a lot of discretion in how they raise their children, I think bodily autonomy is a pretty good place to draw the line.

  81. Sharon Lamp
    October 10, 2007 at 5:28 pm

    “I see in so many comments something I thought that a goal of feminism was to prevent-people telling mothers that they don’t know how to care for their own children, that they are “misguided”. I understand the issue with regards to disabled rights, so I guess my question is how do we reconcile that with feminism, with trusting women?”

    in regards to the above question i would add that feminist thinking also includes the notion that we should be in solidarity with other devalued groups and that we should protest injustice or crimes against members of vulnerable populations. to my mind feminists have a responsibility to speak out against suspected child abuse, neglect, and mistreatment and when we report such instances, we do-and should- expect public authorities to intervene.

  82. October 10, 2007 at 6:34 pm

    Now, if you are willing to devote the rest of your life to helping this mother with bathing, feeding, changing diapers, and loving this crippled, severely retarded young woman, then maybe you have a right to an opinion.

    Is the word “crippled” acceptable here? Because I consider it hate speech.

  83. October 10, 2007 at 7:57 pm

    I see in so many comments something I thought that a goal of feminism was to prevent-people telling mothers that they don’t know how to care for their own children, that they are “misguided”. I understand the issue with regards to disabled rights, so I guess my question is how do we reconcile that with feminism, with trusting women?

    Since when is it the goal of feminism to give mothers absolute power over their children? Feminists have fought for years for young women to have access to birth control over their parents objections. Feminists would object to a 15 year old girl being forced into an abortion by her mother. Hell, I think most feminists would be outraged by a mother setting her underage child up with a nose job.
    The only way that a feminist could come down on the side of unilaterally supporting the mother is if that feminist believe that Katie Thorpe was not herself a young women worthy of feminism’s support and solidarity. In other words, a person would have to unquestingly embraced the ablist notiong that young woman with CP is not fully human.

  84. October 10, 2007 at 8:33 pm

    Besides everything else, I think it’s sort of fascinating how totally we tend to accept the idea that the child is property of the parent. In this case the child is going to be dependent on caretakers even as an adult; but I see this reflexively come up -all the time.- And it’s sort of fascinating how it plays out depending on where the child is situated (during the Shaquanda Cotton thing, for instance, it kept coming up that the State “had to” step in because clearly Mom wasn’t pulling her weight, with the y’know AUTHORITAH). You know, feminism doesn’t stop with “mother’s rights;” the daughter has rights, also. And yeah, I think bodily integrity’s pretty goddamn basic, even if she is mentally disabled as well as physically. And hello: the State is interfering no matter what. If Mom can go through with this then that sets a legal precedent.

  85. blix
    October 10, 2007 at 9:13 pm

    Daisy Deadhead-
    Maybe you’d like to call her differently abled. Maybe you’d like to call her shit chocolate syrup. She has the the mind of an 18-month old and she can’t walk, talk, eat, shit, piss, think, dress, or clean herself. People here seem to think if they distance themselves from the reality of these people’s lives with nice words the truth will go away and we can meditate about personal autonomy. This girl’s life is a catastrophe and her mother’s life is a tragedy. Don’t pretend that nice words will make it better.

  86. antiprincess
    October 10, 2007 at 9:59 pm

    blix – that seems a bit harsh.

    I don’t think that Daisy is really trying to paint a picture of sunshine and roses over the hardship Katie and her family suffer. I think she’s trying to stand up for Katie’s right to not be considered a “catastrophe”, but a life.

    Consider – if Katie already has incontinence issues (and their accompanying hygiene challenges), how is not having her period going to change that? she’s still going to need someone to change her diapers. no net gain in “dignity”, there.

    people talk about needing to help with bowel/urinary incontinence like it’s The Worst Fate Ever. it’s not fatal.

    surgery just seems extreme and more full of risk (complications from surgery, risk of infection, who-knows-what could go wrong) than other options. and, again, it doesn’t really guarantee Katie a pain-free life.

  87. October 10, 2007 at 10:03 pm

    blix: why engage Daisy, rather than people with disabilities ourselves? why use shocking language as if it’s going to sway people? I can do that too if you like: cutting her up. ripping out her uterus.

    I don’t think you talking in such lurid detail about what double incontinence is, as if we don’t know, is a useful tool to convince people that removing organs is morally permissible here.

  88. blix
    October 10, 2007 at 11:06 pm

    I’m sorry I lost my temper. I don’t know what the right thing is. I don’t know if removing her uterus is the right thing or the wrong thing. I do know that people seem to be very anxious to pass judgment without acknowledging or showing any compassion for the desparate straits that this family is in. Part of the probem is that the original post was written entirely from the CNN story, which was very vague – to say the least – about Katie’s mental state, which is the most important fact and makes her situation unlike the people who are commenting here. Again, sorry for the harsh language.

  89. October 10, 2007 at 11:36 pm

    I really dont think that Katie Thorpe’s mental state is of very much relevence here. I think it only serves to create some artificial divide between cool PWD who deserve rights and those unfortunate ones who just are inhuman blobs who don’t.
    If we are going to draw that line, where do we draw it? At what level of IQ exactly does a person lose their basic right to bodily autonomy?
    How serious of a brain injury would I personally have to sustain before the mutilation of my body for the convenience and squeamishness of my caretakers becomes acceptable?

  90. Alicia
    October 11, 2007 at 12:22 am

    just up front, i am profoundly uncomfortable with the idea of forcibly sterilizing any woman for any reason.

    our systems are failing disabled people and failing their caregivers. Reading the telegraph article, things kept sticking in my head ‘we have a hoist, but it’s broken’. Why are the things that are needed for the care of her child broken?

    can we really be surprised that we’ve set up caretakers to fail, and that some of them might latch onto something that they envision as making their lives better? That doesn’t make it right, but in addition to fighting for body autonomy for all women, I think we also have to fight to make sure caregivers have what they need to be caregivers. If all that mother can think about is that she can’t move her child, or that her child’s needs are getting beyond what she can do, and there is (or just feels like, or is just too expensive) nothing she can do, extreme surgical options start to look a lot more appealing, and humans are capable of pretty intense justification/rationalization.

  91. Alex
    October 11, 2007 at 3:31 am

    Annalouise: I’ve been wondering that myself.

  92. antiprincess
    October 11, 2007 at 8:34 am

    I do know that people seem to be very anxious to pass judgment without acknowledging or showing any compassion for the desparate straits that this family is in.

    I fail to see how dangerous surgery will alleviate the family’s desperate straits, even a teeny little bit.

    Will their daughter’s hysterectomy save them money? Save them time? Contribute to their peace of mind in any significant way? Cure their daughter’s myriad other ills?

    I guess only the family can answer that. And it seems a bit pointless to monday-morning quarterback them, it’s true. That said, if the mom truly wanted her decision to be private, she shouldn’t have gone to the media about it.

  93. October 11, 2007 at 9:01 am

    “I do know that people seem to be very anxious to pass judgment without acknowledging or showing any compassion for the desparate straits that this family is in.”

    To reduce it to people passing judgement about Katie and her family is wrong…This sort of thing automatically sets a precedent and to sit quiet is to allow it. For disabled people and allies, we’re not judging, we’re trying to protect our people and our own damn lives! Don’t mistake this for a one-time thing…

  94. Q Grrl
    October 11, 2007 at 10:28 am

    I really dont think that Katie Thorpe’s mental state is of very much relevence here. I think it only serves to create some artificial divide between cool PWD who deserve rights and those unfortunate ones who just are inhuman blobs who don’t.

    Inflammatory and inaccurate, much?

    I think Katie Thorpe’s mental state is the critical point of this mother’s decision. Katie cannot express autonomy. She never will. The mother isn’t trying to own Katie, like property. We can try that sophomoric argument if it makes us feel better, but that’s a selfish claim we’re not entitled to. Ms. Thorpe is providing care, to the best of her ability. She has obviously researched the risks and benefits (other news sources report her interactions with various physicians regarding potential hysterectomy). Her clumsy reported reasoning should not be taken as the lump sum of her crucial decision-making.

    That said, I’m slightly puzzled as to why sexual functioning of a segment of the disabled community should be a deciding factor for this women whose child has the mental capacities of an 18-month-old. The mother is trying to maintain a base level quality of life for her daughter. Her potential decision is drastic and shocking to us — and can be argued successfully as such on various ethical, moral, and human rights levels. But a right for some disabled individuals to reproduce shouldn’t be a measuring stick for the level of care this mother is capable of giving.

    Reproduction in today’s world is a luxury and privilege. We can claim it legitimately as a right, but we’ve far exceeded our personal right to rest on those laurels. One might have the right to reproduce, but with that comes responsibilities, not carte blanche. The desire of able-bodied or disabled individuals to reproduce under the rubric of personal autonomy is weighed against overpopulation, compulsory heterosexuality, and the sexism embedded in reproductive health. Certainly, the individual right to reproduce should not be used as a political wedge to foment the ethics of a caregiver’s medical decision-making.

  95. Alex
    October 11, 2007 at 11:18 am

    That said, I’m slightly puzzled as to why sexual functioning of a segment of the disabled community should be a deciding factor for this women whose child has the mental capacities of an 18-month-old. The mother is trying to maintain a base level quality of life for her daughter. Her potential decision is drastic and shocking to us — and can be argued successfully as such on various ethical, moral, and human rights levels. But a right for some disabled individuals to reproduce shouldn’t be a measuring stick for the level of care this mother is capable of giving.

    I think it can be, actually, as it starts setting a precedent. Who gets to decide whether or not other PWD have the ability to give meaningful consent? Does someone with the mind of a three-year-old? Five? Ten? Does their opinion matter at all, if they are always going to be cared for by caregivers?

    Also: why can ANY decision about it not wait until Katie actually begins menses? The mother is shooting in the dark about whether Katie will be frightened by it, whether she will have heavy periods, whether she will have intense cramping. (My mother gets nothing – I get a week of feeling like shit beforehand, and my sister pretty much has to take a day off at the start of hers. It’s not like it’s hereditary.) Why not wait, observe, and THEN decide whether ANY sort of action is necessary – maybe it can be solved by Tylenol, maybe Katie will not even notice the additional blood, maybe maybe maybes that just can’t be answered until it actually happens.

  96. Alex
    October 11, 2007 at 11:18 am

    Damnit, I closed that blockquote wrong. Sorry. My comments start at “I think it can”…

  97. antiprincess
    October 11, 2007 at 11:25 am

    That said, I’m slightly puzzled as to why sexual functioning of a segment of the disabled community should be a deciding factor for this women whose child has the mental capacities of an 18-month-old. The mother is trying to maintain a base level quality of life for her daughter.

    it’s not so much sexual functioning, the way I see it. (of course, I have to correct for being a) non-disabled and b) not a caregiver.) it’s the fact that having major surgery on any organ is full of risks that can affect the whole body.

    and I don’t think that Trin and others are overly concerned with Katie Thorpe’s sexual functioning. I think they’re seeing her body as a whole, not just her reproductive organs.

    maybe the mother’s whole deal is that her daughter can’t process the monthly pain and bleeding, and wants to spare her that. but why stop at a hysterectomy? consider all the other bodily functions that an 18-month old (or an individual of any age, with the mental functioning of an 18-month old) isn’t able to fully understand – urination and defecation for example, or swallowing and digestion. why not just catheterize her for easy disposal of urine, reroute her intestines into a bag for easy disposal of feces, and give her a stomach tube for feeding? That would make it much more convenient for her caregivers, obviate the need for undignified diapers and messy mealtimes, etc. but nobody’s suggesting those invasive surgeries (that we know of).

    I’d say that the folks focusing on the reproductive nature of the uterus are on the support-mom’s-choice-for-surgery side of this debate.

    but again, I don’t have a horse in this race, today.

  98. EG
    October 11, 2007 at 11:31 am

    Speaking from experience, 18-month-olds actually have a pretty good handle on eating, urination, and defecation. They’re good at all those things, and have a baseline understanding of how and why they’re doing them.

  99. October 11, 2007 at 11:44 am

    Speaking from experience, 18-month-olds actually have a pretty good handle on eating, urination, and defecation. They’re good at all those things, and have a baseline understanding of how and why they’re doing them

    That’s kind of puzzled me throughout this discussion. Given that “mental age of….” is a pretty nebulous, unscientific concept, especially with someone who cannot speak and has limited mobility, it is still puzzling to me that “18 months old” is taken to mean “can’y understand anything”.
    The 15-month-old that I have regular contact with certainly can’t comprehend the complete works of Shakespeare but she understand pretty much all basic concepts and most of what people are saying ot her.

  100. antiprincess
    October 11, 2007 at 11:46 am

    Speaking from experience, 18-month-olds actually have a pretty good handle on eating, urination, and defecation. They’re good at all those things, and have a baseline understanding of how and why they’re doing them.

    :) fair enough. (I suppose I’ll come to a good understanding of that myself in the next year or so, with the addition of the baby into our family.)

    but somehow menstruation crosses some line, apparently.

    maybe it’s okay for caregivers to attend to certain bodily needs, those that match with a sort of infantile concept of the disabled, but not others?

    maybe it’s okay for caregivers to cope with bladder and bowel incontinence in someone with an 18-month-old mind, because that’s what we do for babies and toddlers, and that’s where she is developmentally. but add menstruation into the mix and that seems to cross a line, maybe because toddlers don’t menstruate.

    it’s almost like Katie’s not supposed to mature, physically speaking. it’s like, yeah, her brain’s at the same level as a young toddler, but her body just didn’t get that memo, and is maturing right along with her physical age.

    maybe it’s easier for her mom to cope if her mental concept of her daughter remains Katie-the-baby and not Katie-the-developing-human-being.

  101. Hector B.
    October 11, 2007 at 12:04 pm

    Reproduction in today’s world is a luxury and privilege.

    No one’s arguing for Katie’s right to reproduce, just that the mother’s justification for this drastic invasive surgery seems wholly inadequate. And, unlike other creepy violations of body autonomy like lobotomies and electro-shock therapy, there’s not even a pretense that it would cure her of her CP. It is just a management tool.

    Further, if you believe that the disabled should lead as normal a life as possible, spaying doesn’t seem like it would accomplish this. Putting a 15 year old through menopause — how will Katie understand her hot flashes?

  102. Ingrid
    October 11, 2007 at 12:12 pm

    Ladies and gentleman, I give you the 21st century: We can get health insurance for pets but a disabled girl’s options are soiled drawers or no ovaries. When it comes to disabled women, we address sexual violence through surgery. On them. As in, “We know we can’t prevent sexual violence so let’s focus on preventing pregnancy.”

    Oy. What a mess. And I can’t believe we’re hearing that “private family matter” bullshit.

    So…is this “treatment” approach suitable for all parents who demonstrate genuine need? There are a lot of hungry kids out there. Shall we reduce the wage gap working mothers face or provide stomach stapling for children? There are lots of little kids whose single working mothers are forced to leave home alone. Shall we make the workplace more flexible and provide daycare or allow parents to sedate their children during their shifts? That could work equally well for elder care! And I assume there would be a similar don’t-judge-until-you’ve-been-there attitude of latitude for parents of gay kids, if they could ask for libido-suppressing medication because they truly believe homosexuality will ruin their kids’ lives.

    But of course that would all be wrong. Disabled kids are different. Their parents act out of love. When you mean well, you can’t make a mistake. Or do something horrendous out of desperation.

    Well, piss on that. There’s nothing medical about this need. This is about a real need for real money for real parents to get real help caring for their real kid. This is a grossly invasive and medically unethical response to an economic problem. Some of the solutions are above: close the wage gap, flexible schedules, and daycare for all kids. Support living wages for in-home care workers; we’re talking about a lot of women of color and immigrant women who deserve better pay than they’re getting. Vote for officials who support disability rights instead of the nursing home industry.

    Disabled women have a history of being on the receiving end of really crappy ideas carried out by well-meaning people. Including parents. Who, in this case, are trying to rationalize the removal of a child’s healthy organ because they can’t expect a single bit of help changing an adult daughter’s underwear or protecting her from predators.

    Oy again.

  103. Q Grrl
    October 11, 2007 at 12:23 pm

    Hector, she’s would retain her ovaries, therefore she would not undergo menopause as a result of this surgery.

    Speaking from experience, 18-month-olds actually have a pretty good handle on eating, urination, and defecation. They’re good at all those things, and have a baseline understanding of how and why they’re doing them.

    And that’s why the majority of children need serious coaching, leadership, mentoring, guidance, and role-modeling when they start to enter the physiological and psychological challenges of puberty, eh? We have entire genres of film and literature dedicated to the precarious passages into the changes of puberty. It doesn’t seem to matter much that we understood needing to take a shit when we were 18-months-old.

  104. October 11, 2007 at 1:42 pm

    I think it only serves to create some artificial divide between cool PWD who deserve rights and those unfortunate ones who just are inhuman blobs who don’t.

    Yup. If someone like Katie Thorpe isn’t a person, doesn’t that mean that I’m only, say, 99.99999999983% of a person myself?

    I mean, I understand the classification in, say, philosophy, where we’re talking about the capacity to morally reason. And yeah, we need a word for that for various reasons. But “person” is an unfortunate one, to me. Because what does personhood actually bring with it? How do we respect someone who we deem “not a person”? What does it require?

    We have a real tough time talking about that seriously if the options are “person” or “vegetable”.

  105. October 11, 2007 at 1:44 pm

    it’s almost like Katie’s not supposed to mature, physically speaking. it’s like, yeah, her brain’s at the same level as a young toddler, but her body just didn’t get that memo, and is maturing right along with her physical age.

    Yeah. We use “mental age” to justify being puzzled at people for not remaining babies. That worries me, even though I don’t feel quite the same way as some people who think there is no use for these kinds of classification of cognitive ability. We really need to find a different word for it, so as not to heighten that feeling of dissonance.

  106. antiprincess
    October 11, 2007 at 3:06 pm

    We have entire genres of film and literature dedicated to the precarious passages into the changes of puberty.

    well, sure.

    but I gotta say, I have a mental age more-or-less commensurate with my physical age, and I still couldn’t make head nor tail of the overwhelming amount of wildly conflicting information contained in those genres of film and literature.

    and it’s conflicting because people have a wide variety of agendas regarding sexual behavior in young adults.

    I would have preferred a straight biological approach. I got other stuff all mixed up in it, which made no sense to me, and made the actual biological facts more confusing to me.

    I’m saying – you don’t have to have cognitive disabilities to be (and remain) completely confused about puberty.

    but in this case, as I’ve said before, it’s not about sexual activity, or potential sexual activity. it’s about major surgery being seen as a solution to a problem that hasn’t even happened yet, a solution that may bring other problems, a solution that exposes her to serious risk.

  107. EG
    October 11, 2007 at 3:30 pm

    It doesn’t seem to matter much that we understood needing to take a shit when we were 18-months-old.

    Right. I didn’t say it did. I was merely clarifying an analogy that didn’t work out. I wasn’t expressing a position yea or nay on the hysterectomy.

  108. October 11, 2007 at 5:43 pm

    But of course that would all be wrong. Disabled kids are different. Their parents act out of love. When you mean well, you can’t make a mistake. Or do something horrendous out of desperation.

    Yes. Exactly. Parental love is this great shield or something. No wrong could ever come of it.

    Which is cute if we’re going to Hogwarts, but I don’t think I’ll be playing broom soccer any time soon myself.

  109. Kat
    October 11, 2007 at 6:25 pm

    But of course that would all be wrong. Disabled kids are different. Their parents act out of love. When you mean well, you can’t make a mistake. Or do something horrendous out of desperation.

    Even those parents of children with disabilities who really do act out of love are sometimes 1) financially strapped; 2) emotionally strained; 3) physically tired; 4) without real support systems; and 5) often uniformed or unable to access the range of options for whatever issue they are trying to resolve. And may end up doing something inadvertantly horrendous.

    And then there are those parents who are not acting out of love, and cloak themselves in the protection of the sainted-parent-of-a-child-with-a-disability-robe. (Although I do think this is the exception and not the rule.)

    In either case, the child with the disability is vulnerable, the parent has autonomy (which can either be huge responsibility or an opportunity for abuse), and the pervasive lack of social service support compounds the entire problem by leaving the situation without any checks and balances–either to help the family cope or to protect the child from any abuse.

    I’m still awestruck that the doctors that the mother has consulted are actually considering this. Once it gets to a medical professional, shouldn’t there be some sort of screening process and a list of options? The fact that they are considering it speaks in and of itself as a failure of (or lack of) any system designed to promote Katie’s best interest.

  110. October 11, 2007 at 9:49 pm

    You know, defecation can be painful, confusing and weird-feeling. I don’t suppose we need to remove her bowels and give her a colostomy bag? Swapping bags would certainly be more convenient, wouldn’t it?

  111. October 11, 2007 at 9:55 pm

    And I’m tired of this meme that parents of children with disabilities bear such an enormous burden and that therefore no one is allowed to criticize them. One, for the rhetoricizing of pwd as burdens and nothing more (they’re like dead weight to these commenters, no human value whatsoever) and two for the free pass for these parents to do whatever they see fit. As a pwd and as someone whose mother was psychologically abusive, I’d like to remind people that parents of children with disabilities can harm their children too.

    I’m trying to phrase this as carefully as possible with a tired brain, because I do not believe that parents should be subject to constant scrutiny. Poor parents, minority parents, parents of differently-abled children, all sorts of parents have borne the burden of societal disapproval (no matter their actual behavior) for ages, and I don’t want to perpetuate that.

  112. October 11, 2007 at 10:45 pm

    And I’m tired of this meme that parents of children with disabilities bear such an enormous burden and that therefore no one is allowed to criticize them. One, for the rhetoricizing of pwd as burdens and nothing more (they’re like dead weight to these commenters, no human value whatsoever)

    Think about the name of Amanda’s blog: Ballastexistenz. There’s a reason for that.

  113. October 12, 2007 at 10:22 am

    And I’m tired of this meme that parents of children with disabilities bear such an enormous burden and that therefore no one is allowed to criticize them.

    Yes, yes, yes. I once wrote a paper on this and my professor just kept saying “but think of the burden! think of the mamas!” and I’m just wondering: isn’t any child a tiring, exhausting, frustrating burden sometimes? That’s not to say that we don’t come with extra issues in a lot of ways, because she’s right, we do. But there’s this comparison that makes it sound like raising someone who thank the gods isn’t one of us is easy.

    Nope. Parenting is a tough job regardless. Let’s not lose sight of that here.

    Is it easier, for example, to take care of a paralyzed, double incontinent 15 year old than it is to take care of your able-bodied, generally fully cognitively capable 15 year old struggling with a drug problem?

    What if your previously “normal” 15 year old comes down with a degenerative disease? Is it okay if you snap in the same way then?

  114. October 12, 2007 at 3:56 pm

    Ingrid, you rock. I loved your comment.

    G-d, I hate these discussions when they take place on so-called “ally” feminist blogs. The arrogance of ignoring what PWDs have to say in these conversations is nothing short of breathtaking.

  115. October 12, 2007 at 4:37 pm

    G-d, I hate these discussions when they take place on so-called “ally” feminist blogs. The arrogance of ignoring what PWDs have to say in these conversations is nothing short of breathtaking.

    We hate mamas.

    Also, it’s impossible any of us could BE mamas. Including mamas of other PWD.

  116. October 12, 2007 at 8:18 pm

    We hate mamas.

    speak for yourself! I love mamas. But I have a disability! Ergo I must not exist!

    gah.

  117. October 12, 2007 at 10:24 pm

    G-d, I hate these discussions when they take place on so-called “ally” feminist blogs. The arrogance of ignoring what PWDs have to say in these conversations is nothing short of breathtaking.

    I’d rather exist. GRRRRRRRRR! I HATE MAMAS! GRRRRRR! MOTHERD BAAAAAAAAD! RAAAAAAAAR!

    ;)

  118. zuzu
    October 12, 2007 at 10:59 pm

    G-d, I hate these discussions when they take place on so-called “ally” feminist blogs. The arrogance of ignoring what PWDs have to say in these conversations is nothing short of breathtaking.

    Well, this is when it’s worth distinguishing between bloggers and commenters. The blogs themselves might be allied, but you can’t always predict or control who shows up to comment, and the people who do comment may not be to your liking.

    But, given all that, I’m more than happy to provide a high-traffic forum for your response to the arrogance. I know that sometimes I’ve seen people giving up or getting frustrated with Feministe because of what kinds of comments are allowed through in the name of balance. That’s too bad, because it means giving up the opportunity to *respond* to such crap in a high-traffic forum.

    So please do keep responding.

  119. October 12, 2007 at 11:42 pm

    Well, this is when it’s worth distinguishing between bloggers and commenters. The blogs themselves might be allied, but you can’t always predict or control who shows up to comment, and the people who do comment may not be to your liking.

    That’s a good point, and I should be clear: the original post does not reflect the ableist views that several commenters have espoused in the comment sections.

    Part of this is that I personally see websites like Feministe and Pandagon as sources of information, both from the posters and the commenters. Until disability rights issues are raised, and it’s like … whoa, is this the twilight zone? What’s with the casual bigotry? the inability – the refusal? – to listen to the voices of people who are closest to the issues? The information-to-static ratio is all out of whack, with commenters I would like to call my allies not just implying but in some cases saying that I – and my clients, and my friends – are not fully human.

    It’s like there’s this seemy underbelly of disability-based prejudice lurking within a good percentage of the commenters at these blogs. And, having read Lindsay’s take on the Ashley X case (as well as Amanda’s) – well, the folks writing the posts aren’t always so prejudice-free themselves.

  120. October 14, 2007 at 10:55 am

    Until disability rights issues are raised, and it’s like … whoa, is this the twilight zone? What’s with the casual bigotry? the inability – the refusal? – to listen to the voices of people who are closest to the issues?

    Yes, exactly. It’s very strange indeed. It’s as if the right to perform surgery on us were some profoundly important right that it’s terribly wrong to threaten.

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