The hysterectomy is a drastic intervention. If the mother's motivation is to spare her daughter the discomfort of menstruation, she could adopt the less permanent strategy of continuous use of hormonal contraceptives. It seems like this serves the purpose of sterilizing the woman.

You were correct when you said "I don't think it is in our rights to dictate whether they should menstruate or not." However, her mother does have such a right.

I am the mother of a severely mentally disabled daughter, who is fast approaching puberty. To put her disability in more simple terms she will never go to college, she will never live alone; in short, my nest will never be empty. She doesn't have the mental capacity to understand the reponsibilities that come with sex, but she does know what feels good. I may not be able to protect her from STDs, but a hysterectomy would cut down on unwanted pregnancies as well as the risk of many female cancers, some of which begin with a sexually transmitted virus.

Yes, our situation is very different from the one you described, but hopefully it illustrates the danger of casting blanket judgments on children with disabilities and their parents. Such cases must be considered on a case by case basis, and in most of them I'd venture a guess that Big Brother has no business being involved. Sometimes mom really does know best.

My mother made this choice nearly 30 years ago for my sister, who is moderately developmentally disabled. At the time, there had been sexual abuse by a teacher and aide at her school, and two of her classmates were sexually active with non-disabled men (I know, whole other issue). One girl had become pregnant.

As a Catholic, my mother knew she would not choose abortion if my siter became pregnant, so when she (sister) had an emergency appendectomy, my mom asked the hospital to also remove her uterus. I remember my sister telling me that she would no longer have her period - she was thrilled. She understood that she wouldn't have a baby, and was fine with that. Since that time, my sister has been sexually active (with appropriate partners), and I am relieved that my mom made the choice she did.

This seems like something someone would decide without thinking things through. I mean, I hate my periods, and at one point I wondered if a hysterectomy would be better. Answer? Not so much. First of all, it's fairly major surgery, with all the risks that entails. Then you get all the side effects of menopause, then other issues like problems with your bladder because it doesn't have a uterus to hold it in it's normal place anymore. I'm not an expert of hysterectomies, but I know enough that even having periods so bad that I've had to call in sick to work hysterectomy doesn't seem like a good option. From what I understand, Thorpe hasn't even started her period yet, so it's not that she's have the worst periods ever, her mom's just afraid of the usual discomfort and mess. I'd say try continuous cycle birth control first, that works for me.

My sister has pretty severe epilepsy and is moderately retarded--can't effectively brush her own teeth, can't be left alone to bathe. What we usually do is have her wear depends when she's on her period--which she frequently wears when seizures are bad anyway. She can change them easily when she feels like it, as they don't require much motor control to speak of. I don't know how bad this girl's CP is, but it doesn't seem like something depends and a lot of motrin couldn't manage.

Sexuality continues to be a big issue in the disabled community, more specifically sexual abuse. There are many women in group homes and the like that are only marginally to standard in terms of care, who have no way of protecting themselves from rape or assault. I know my own sister was groped by a high-functioning cousin her age at a family party. The level of denial and anger that went on at us in that boy's immediate family was unreal. Everything my sister said happened was discounted due to her disability--even though she clearly couldn't have made it up. I am sure that kind of discounting of disabled women goes on much more severely on a national level.

Shel, I was typing when you posted, and said what I was trying to say so eloquently. As the sibling of a disabled child, I've watched my parents struggle to raise my sister, who was born at a time when parents were advised to institutionalize disabled children and get on with their lives. Once my parents are gone, it will fall to me and my other sisters to care for my sister. We'll continue to care for her the way mom did/does.

First, I would like to say that I greatly appreciate that feministing is turning it's attention to individuals with mental and physical disabilities or challenges. I've been posting here for a while and this is the first disability-related post I've seen. Being disabled dramatically impacts the way you are judged and intersects strongly with how people perceive your masculinity/femininity.

Samhita, I would just like to say that I appreciate you bringing attention to these issues.

I read the same story on http://www.dollymix.tv/2007/10/alison_thorpe_chooses_hysterec.html#more
a few days ago and I'm not too sure where they got their facts from, but they stated that doctors have agreed that she would never be able to have children anyways so it isn't just an issue of sterilizing her.

Seems like mom wants to make her job of taking care of her daughter easier, and I completely support that. The daughter is going to be the mother's responsibility forever. I don't see how having the daughter take birth control pills until menopause is any more humane than a hysterectomy. Furthermore, the hysterectomy is less expensive than the pills or hiring help. It would be a complete different story if this young woman was able to make decisions for herself, like Whitemore's sister. But it doesn't seem like this young woman can. When someone can't make decisions for themselves, the closest family member makes the decision for them. We don't wait for some miracle to occur where the person can magically give consent to something. I think the mother should make the decision because she knows better than anyone else what is best for her daughter.

I will admit my ignorance about cerebral palsy but I feel that it really is up to the parents who are going to have to care for her. Right now it just seems like it's about menstruation but if she does become sexually active then she and her parents would have to deal with a potential pregnancy and I can imagine that's the bigger fear.

It's a tricky subject and I'll apologize if I offend anyone but it worries me when special interest groups can have a say in how parents raise their child in order to prove their point or advance their agenda.

KWANTAMETTE: "The hysterectomy is a drastic intervention. If the mother's motivation is to spare her daughter the discomfort of menstruation, she could adopt the less permanent strategy of continuous use of hormonal contraceptives. It seems like this serves the purpose of sterilizing the woman."

I can definitely see what you are saying. In either case (hormonal or surgical), however, the outcome is the same: Forced sterilization.

I think this really is a tough issue and I think it is important for the parents to have lots of help in making this kind of decision. Most important, I think, is to try and include the daughter in the discussion as much as possible so that she understands what is going on to the best of her ability.

Ultimately I think the parents need to make the best decision they can for both the daughter and the family who is ultimately responsible for taking care of a child who is conceived by the daughter. This may mean in some cases surgical or hormonal intervention (or for males, vasectomies). I can definitely see the other side of this - that it should be discouraged because it amounts to forced sterilization and control of women's bodies by others, but I also think that, as Shel said, the "right" thing to do may vary on a case by case basis.

Then you get all the side effects of menopause

I think this only happened when the ovaries and tubes are removed as well.

These are tough decisions and I have to agree with Shel in that there is "the danger of casting blanket judgments on children with disabilities and their parents."

i appreciate how the issues affect the caretakers of disabled persons. i suspect that i'd be in favor of disabling fertility over naught -for the reasons related to potential sexual abuse. However the definition of disability is an awfully fluid one. Where is the dividing line between being a ward and being an independent adult? In light of rulings that regard fully able adult women as children -where should the dividing line be drawn.

However i have to question the choice of a hysterectomy in response to the issue of MENSTRATION.

As someone who needed to have her fertility disabled in order to take a particular anti cancer medication (ARIMIDEX), i probably looked at some of the same options.

Birth control and hormone injections are feasible -IF ONE'S HEALTH PLAN PAYS FOR birth control. Then in addition to all of the other costs of care, add in another medications. Hormone injections could be feasible - but the ones that i could have taken would have cost my insurance company one thousand dollars per injection, and i was required to have one per month. If one is close to the lifetime maximum allowed by a plan, this might not be the best way to spend the money. If one doesn't have insurance, is this worth $12,000 per year in terms of efficacy of expendature? Plus hormones and birth control pills have cancer risks as well. Do care providers think to do breast exams for their adult charges?

Hysterectomies are invasive and require a lot of recuperation time. How much of the surgery will be covered by insurance? Who will care for the patient during recovery - especially if they are marginally functional to start? I had my ovaries removed laproscopicaly, and that was a pretty easy recovery for me, BUT - both oophrectomies and hysterectomies, by virtue of reducing estrogen - also increase the risk of osteoporosis. Is it appropriate to 'make' disabled adults more fragile, especially at an age where they may have outlived familial caretakers?

And if the issue is sexuality - well speaking from experience, oophrectomies don't do much for a really great sex life.

There are a lot of consequences for menstral discomfort.

i'm glad i don't have to make this choice for anyone else. i'm glad that no one made it for me.

i wonder how long any of us will have choices...

Then you get all the side effects of menopause

I think this only happened when the ovaries and tubes are removed as well.

These are tough decisions and I have to agree with Shel in that there is "the danger of casting blanket judgments on children with disabilities and their parents."

My daughter is still a baby and has a diagnosis of cerebral palsy, though we don't know what that will mean yet as far as her developmental potential is concerned. She is definitely less affected than the child in this story. Still, I know that everything that is relatively easy now that she is a baby will be much harder in the future, when she is larger and more mature. I don't like to contemplate how difficult her continued care might (or might not) be, but I hope I'm strong enough to prioritize her personhood over my comfort or workload.

I hesitate to say too much about this woman's situation though, because I'm not living her life for her. I know that in the case of severely disabled people, ease of care has a big effect on quality of life. I don't know how much that should be taken into consideration. I suppose these things have to be considered on a case by case basis. There is no room for blanket judgments.

I wonder why this difficult decision has to be so public. Does every uninvolved schmo with an opinion get to have a say?

Is there a reason why they can't give her the period-free pill? (the brand-name escapes me at the moment) . . . it would mean she wouldn't menstruate, but would have the OPTION later, and wouldn't go through menopause . . . why do surgery when something less invasive is available?

I actually heard the girl's mother interviewed on BBC newspod the other day. Thus, I don't have a transcript in front of me, and give you the disclaimer that this is merely what I remember. There are a couple of relevant points that most media outlets don't seem to be covering:

1) Katie, the disabled girl in question, is on the extremely disabled, like the most severe 5% end of cerebral palsy.

2) Katie responds to even moderate pain and discomfort with screaming, crying fits. Her mother wants to save her the fear and stress of going through this several days a month.

3)To answer the question if the operation is to make things easier for her care givers, her mother said that Katie is already doubly incontinent, which means what you would expect. So on that level menstruation would be no worse that their current day to day.

4)Previously Katie has had several medically unnecessary surgeries to make life easier for her and her caretakers. They didn't get any press nor was it considered a moral debate until it came to reproduction.

It sounds to me that the girl will never, or can not have voluntary sex, let a lone a baby. With these things in mind, the uproar takes a really scary turn towards banning a woman from ruining a perfectly good womb, regardless of how it may improve anyone's life.

I think it is a mistake to allow the public to second-guess (except in extreme circumstances) personal decisions made by a mother (and possibly the daughter, it is not clear whether the daughter (a) had input in the decision or (b) was capable of making such a decision). These are decisions that need to be made by the people who are actually involved based on thier own very individual circumstances. I am much more concerned about the general public telling this mother and daughter what should be done to the daughter's body then allowing the mother make a decision that she feels is in the best interest of her daughter.

Has the girl even had her first period yet? If not, why can't they wait to see what it will be like for her? It may bother her less than her mother expects. Seriously, menstuation isn't a horror for everyone. I say this as someone for whom it IS a horror; I get debilitating cramps, vomiting, and fainting. Not everyone has that kind of experience. And if she does, she can do what I did: go on hormone pills.

It just seems like they are jumping the gun by removing her uterus BEFORE she gets her first period, especially since, at the age of 15, I presume she's pretty close.

This may mean in some cases surgical or hormonal intervention (or for males, vasectomies).

I find it interesting that the only stories I read about where there is a question as to the level of medical intervention is when the disabled child is female and the surgery/treatment regards the daughter's reproductive system. When parents have severely disabled sons, do they have those sons sterilized? Do they do so for various reasons, some which people may approve, some not (e.g., to avoid the son getting a woman pregnant and passing along disabled genes, or to use hormones/chemical castration to reduce testosterone levels, despite only dubious connections to behavioral repercussions of hormone levels)?

I really have no idea whether or not disabled sons are forcibly sterilized by their parents, but it's certainly not the subject of press coverage, and I find the latter (and, if it happens, the former) interesting. Is it that the parents are taking away from a girl child something considered more essential to a female -- i.e., the capacity to have a baby? Is that why the media focuses on these stories? Is it more fearmongering, with the disabled girl child being in need of more protection from male sexual predation (as a reminder of how all women need to fear rape)?

one thing i am wondering about the whole issue of going through menopause after the hysterectomy: are the chances of going through menopause effected by when the procedure is done? with female animals i just recently learned that if you spay them before they hit puberty there is almost zero chance that they will go through a menopausal period, where as if you wait until after they have started puberty, they will go through menopause. i wonder if the same applies to humans? i wonder if this is why the issue is so important to face now rather than later?

On one hand, I would think that surgery over menstruation is a little excessive. I suppose it would have some dependence upon whether or not her disability increases the severity of the pain. But I'm not a woman, and I don't have much personal experience with the disabled (mentally, anyways), so I'm a bit out of my field.

On the other hand, I do think that for the sake of society, people who's severe disability roots from their genes should be prevented from reproduction. I'm not sure what that means, and I know the slippery slope that kind of thought can lead to, but I think somehow it's the most utilitarian thing to do. Not to put a blow against the I Am Sam or anything, but I think some people really don't have the capacity to raise their kids (certainly there are plenty of non-disabled parents who fit this description), but my main concern is that the children are more likely to have those same disabilities. I think society's attitude should be to respect and accept the disabled but not to encourage its increase. Certainly we don't want to always be making decisions for people who can't make them for themselves, right?

But in concern for this disabled girl's best interest, if the girl herself is not capable of making a decision of her own, someone else has to, and who is best fit to make such judgements? The mother? The government? A blog network of women who've never seen her? I dunno. I guess we'll find out.

To answer the question if the operation is to make things easier for her care givers, her mother said that Katie is already doubly incontinent, which means what you would expect. So on that level menstruation would be no worse that their current day to day.

I see where you might think this, but menstruation makes a difference in day to day care, whether the woman is incontinent or not, especially if she has a heavy flow. That is not to say a hysterectomy is right in this case, just wanted to point out that menstruation makes a difference in daily care.

On the other hand, I do think that for the sake of society, people who's severe disability roots from their genes should be prevented from reproduction. I'm not sure what that means, and I know the slippery slope that kind of thought can lead to, but I think somehow it's the most utilitarian thing to do . . . I think society's attitude should be to respect and accept the disabled but not to encourage its increase.

Oh my fucking god. Did you seriously just say that? Did you seriously just say that?

So you don't think that we should be able to decide if she should have a hysterectomy, but you get to decide whether or not an entire group of people get to reproduce? Forcibly sterilizing people is okay now? Because I thought that we finally stopped doing that in the U.S. after way too fucking long.

Yeah. I'm pissed.

On the other hand, I do think that for the sake of society, people who's severe disability roots from their genes should be prevented from reproduction. I'm not sure what that means, and I know the slippery slope that kind of thought can lead to, but I think somehow it's the most utilitarian thing to do . . . I think society's attitude should be to respect and accept the disabled but not to encourage its increase.

Spare her the pain of menstruation? Rights for the disabled? Decisions best left up to the mother and the medical professionals? Meh, whatevs. Now, eugenics? Now there's an idea I can get behind!

Pardon me while I go slam my head in a door.

Following a hysterectomy, this FAQ suggests 1-4 days in hospital, and return to normal activity in 1-2 weeks. I think it's problematic to use words like "major" and "extreme" to describe the surgery. Those words are too imprecise.

http://www.4women.gov/FAQ/hysterectomy.htm#d

Taking that FAQ as representative, and looking at the "normal worst case," it's a much more basic question about what's "better":
-four days in hospital, and a few weeks of recovery, plus the other risks of hysterectomy accumulated over a lifetime?
-A lifetime of menstruation, with whatever pain is involved, and whatever risks are involved?
-A lifetime of suppressed menstruation, with those attendant risks?

It seems pretty obvious that the "right" answer varies a LOT. How long is a life time? What are the values of the person involved? Is it better to have a lot of pain for a short time, or a little for a longer time? And so on.

All of those value-based decisions change from pro to con depending on the intimate knowledge of the value structure, tolerances, and beliefs of the person involved. So without knowing that, how can you make a decision as to whether it's justified?

I can see how the government might-MIGHT--be able to have a valid opinion based on a lot of interviews and exams. But I don't see how we can attempt to make our own judgments other than for hypothetical situations, without a lot of information.

I'm not saying I trust the mom to be unbiased. Certainly she IS biased; she's human, and we're all biased.

Maybe she has a twisted idea of what her daughter wants; maybe she is incorrectly assigning priorities. Maybe, if push came to shove, her daughter would be happier in an institution, with a uterus, than with her mom and no uterus.

But I don't see how we can figure that out without a lot of work. And I know we can't get an answer from the little we've been given on the case.

I dont know if this has been addressed...but I'm interested in knowing what type/severity of cerebral palsy this girl has. there are some cases of cerebral palsy in which cognition & intelligence are affected...and some cases in which only motor movements/skills are affected, but cognition/intelligence remain completely "normal".
i'm thinking that if this girl is mentally disabled in addition to being physically disabled...it's a whoooole different story than if she just had a physical disability.

I'm kind of surprised that so many commenters are so cavalier about continuous hormone treatments and the year-long bc pills, especially during puberty. Suppressing ovarian function during puberty has consequences beyond just fertility, and they aren't well studied at all. (E.g., messing with major hormones involved in bone formation during your prime bone-growth years.)

From this info, I would really just want to offer Katie and her mum lots of solid, feminist health info about the role of menstrual-ovulatory cycles in overall women's health and on hormone cycles and cerebral palsy, and make sure they're as super-informed as possible. Maybe they are, and the mum has already worked out the relative costs and benefits of a hysterectomy versus painkillers. I hope so. It's hard to find accurate info about healthy menstrual cycles.

...often held belief that disabled people don't have the right to experience sexuality

A hysterectomy does not prevent the woman from having sex...what am I missing here?

AmitJoshi, the hormonal fluctuations that occur with a woman's menstrual cycle, and particularly what occurs when one goes through menopause, has a very big impact on a woman's sexuality. Yes, she could definitely still have sex and experience sexual pleasure, but it is seriously compromising the natural sexual cycles that all of us go through in life.

I would just like to add a little something extra about caring for someone with a disability. As I said before, my daughter is severely mentally disabled. She is due to begin menstruating any time, but it isn't possible to talk with her and prepare her for it. There is no explaining to her about her changing body. She won't have any idea what is happening to her. What about her fear of what is happening to her? We're talking about a child who doesn't see what the problem is with pooping in the floor--how do you propose explaining this to her? We're talking about a child who will never be able to care for herself, let alone a child (or ten) of her own.

Furthermore, her disability includes extreme tactile defensiveness. She is very particular about what touches her--for instance, the only clothing she will tolerate is cotton dresses. If we tried to have her wear sanitary napkins or even Depends she would discard them at every turn.

As for alternative means of stopping menstruation, anyone who tries to force a pill down her throat will likely damn near lose a finger, as her dentist will attest. Yes, something like the Depo injections might eliminate monthly cycles, but many women (myself included) experience constant spotting instead. And these treatments are not recommended for extended use (more than 5 years without a break), due to increased risk of uterine, breast and ovarian cancer. Is that really the better solution?

And as her caregiver, am I seriously expected to replace clothing, furniture, and even carpet every month?

The judgment from those who don't have a clue what these children's (and parents') lives are like day to day is absolutely staggering.

Contemplate your own uterus all you want, but leave my child's to me and her doctors. You know, people who actually know her. And yeah, I'm pissed too.

Shel, if you're responding to me (your "and yeah, I'm pissed too" indicates that you may be), I would like to point out that you are promoting a hysterectomy for completely different reasons than forced sterilization, which is what Aitrus suggested that we should impose all on severely disabled individuals. There are, obviously, medical reasons for a hysterectomy. Eugenics isn't one of them, and I can only assume that you would want better than forced sterilization decided at a stranger's will for your daughter or anyone else. I do.

And if you weren't addressing me . . . sorry and never mind.

On a related topic, there was a really interesting article in The Observer this Sunday gone... see...http://observer.guardian.co.uk/uk_news/story/0,,2185322,00.html

It's about a college for moderately disabled teenagers (16+) in the UK that actively helps its patients explore their sexuality both mentally and physically. The article raises some points I think related to the themes brought up above about how disabled people themselves may feel about their sexuality and their right to sexual autonomy despite perhaps not being able to physically discover it without help.
It doesn't mention this case specifically as far as I recall, but I just thought it admirable that the workers who stayed to implement the programme (some left in disgust after it was introduced..nice) recognised that this was an important aspect to their patient's lives and that they were willing to help these people further their relationships if wanted in a safe environment.

"I think it's problematic to use words like 'major' and 'extreme' to describe the surgery. Those words are too imprecise."

But it is major surgery. Any procedure that involves general anesthesia comes with the risk of a number of complications, including death. I don't know yet whether those risks are outweighed by the benefits, but let's not forget them.

"Yes, our situation is very different from the one you described, but hopefully it illustrates the danger of casting blanket judgments on children with disabilities and their parents. Such cases must be considered on a case by case basis, and in most of them I'd venture a guess that Big Brother has no business being involved. Sometimes mom really does know best."

...and sometimes the disabled one knows even better! Doesn't "disabled youth" include a lot of children who grow up to be perfectly sharp and mature mentally (like, way smarter than me) but have some other disability like blindness or a missing limb?

"I'm not an expert of hysterectomies, but I know enough that even having periods so bad that I've had to call in sick to work hysterectomy doesn't seem like a good option. From what I understand, Thorpe hasn't even started her period yet, so it's not that she's have the worst periods ever, her mom's just afraid of the usual discomfort and mess. I'd say try continuous cycle birth control first, that works for me."

What about uterine ablation, after trying BCPs and finding out those aren't good enough? I've heard of women choosing to end their periods and fertility without hysterectomy by having their uterine lining cauterized. Of course, the issue of consent when someone else makes the decision for a child trapped in an adult body is still there, even if that someone else is considering uterine ablation instead of hysterectomy.

"And if the issue is sexuality - well speaking from experience, oophrectomies don't do much for a really great sex life."

...and even if someone remains too mentally behind to ever consent to sex, she or he could still masturbate and enjoy her or his sexuality that way, right?

"Is there a reason why they can't give her the period-free pill? (the brand-name escapes me at the moment) . . . it would mean she wouldn't menstruate, but would have the OPTION later"

Good point. It's not just surgery vs. hormones but also permanent vs. temporary.

"It sounds to me that the girl will never, or can not have voluntary sex, let a lone a baby. With these things in mind, the uproar takes a really scary turn towards banning a woman from ruining a perfectly good womb, regardless of how it may improve anyone's life."

Especially since some people out there think a woman doesn't need to volunteer to have sex or want to have a baby to be an appropriate wife and mother...

"And as her caregiver, am I seriously expected to replace clothing, furniture, and even carpet every month?"

...and they'd probably expect you to try to marry her off to a "good provider" who could "keep her in line" instead of remaining her caretaker yourself.

"with female animals i just recently learned that if you spay them before they hit puberty there is almost zero chance that they will go through a menopausal period"

Really? I heard that almost no species have a menopausal stage in the first place and that we're an exception.

No, not specifically directed at you Cara--just stealing your line is all. ~wink~

As I stated in my first comment to this post, I think it's important that all such decisions be made on a case by case basis, without the so called "help" of strangers, particularly the government, and that all blanket judgments be avoided. Just as no two nondisabled individuals are alike, neither are two disabled individuals.

I think the blatant judgment of this girl's mother exhibited in many of the comments is detestable at best. My daughter and I are judged every day by someone, for something, and to put it mildly it really sucks.

I find it very interesting (not to mention somewhat maddening) that a group of people who doesn't want to be told what to do sure can be quick to tell others what they should or shouldn't do.

What troubles me in this discussion, whichever side the speaker falls on, is the failure to distinguish between mental and physical disabilities. A child with very low mental function is not capable of consenting to anything - her medical care, sexual activity, or even general daily life decisions. My sister, luckily, functions a little higher, but she still has difficulty making decisions - a cognitive problem on her part - and she relies on her family to help her or to make decisions for her. Believe me, that's a burden that me and my family bear, it's not a benefit.

i find it really troubling that so many people are willing to so easily disregard a sexist, ableist act on a site that is supposedly for and by feminists.

yes, providing care for a disabled person can be difficult for a family (this is coming from a ventilator-using wheelchair user) but the burden is not on the disabled person. the disability itself is not to blame. what about considering the fact that our society could easily provide home-based care but instead only allows disabled people the option to be institutionalized or be force into difficult situations like this one?

this kind of thinking is why disabled people are murdered, abused, harvested everyday and it's really scary to see feminists support it so openly and sympathetically.

Up here in Seattle we have been debating a related case- that of a 6-year-old disabled girl whose parents found doctors to remove her sex organs, breast tissue and to give her hormones to stunt her growth, keeping her child-sized forever. She is both mentally and physically disabled, and her parents say they chose this option to keep her care simple and to make her more portable. It turns out this was illegal, and the doctor who did it just committed suicide. Read the article and come to your own conclusions.
[url]http://www.msnbc.msn.com/id/21225569/wid/11915773?GT1=10514[/url]

Just a note--from what I've read on other sites, the fifteen-year-old in question has the mental capacity of an 18-month-old child. In that case, her ability to contribute to the decision-making is more or less nil.

On further thought, I find the headline to this post misleading. In the case of youth--and adults--as severely disabled as this girl is, which is to say, so mentally disabled that she is incapable of making an informed decisions, much less expressing one, "we," as in some combination of family, state, and caretakers will always be deciding their fate. I'm not sure how else it could be. The issue here whether this is the right decision.

This reminds me of the mistrust of women by anti-choicers to make decisions regarding their own reproduction. Apparently Katie will never be able to consent to any medical procedure or sexual activity. Therefore, her next of kin is required to make all of her decisions for her. None of us know how much research this woman has put into her decision to have her daughter have a hysterectomy. I'd just like to see her given more credit as a person capable of making rational, appropriate decisions, as an adult woman and mother.

"Really? I heard that almost no species have a menopausal stage in the first place and that we're an exception."

It depends how you define menopause. There are a number of species where their is a cessation of reproductive ability later in the life of the female (e.g., baboons, lions, some species of whales, etc.). People argue about whether this is the same or different as in humans, and whether this is simply a consequence of the reproductive system running down or an adaptation to stimulate investment in grandchildren rather than in producing more offspring. Many of the species where "menopause-esque" patterns are noted are large social mammals, hence the grand-mothering hypotheses. That's the extent of my knowledge on that - sorry I couldn't give a more definitive answer.

"'Really? I heard that almost no species have a menopausal stage in the first place and that we're an exception.'

"It depends how you define menopause. There are a number of species where their is a cessation of reproductive ability later in the life of the female (e.g., baboons, lions, some species of whales, etc.)."

Yeah, I'd heard of some whale species being another exception, but not about baboons and lions.

Let's see: If Katie were a healthy 15-year-old, there would be outrage over this, but because she has a disability and normal bodily functions are inconvenient for the caregiver, it's perfectly okay to treat her as a second-class citizen.

A person is either for bodily integrity or he or she is not. Parents have NO right whatsoever to mutilate their kids for their convenience.

Don't hand me the "walk in my shoes" crap, either.

I'm not sure it's a question of "inconvenience," as you put it. I'm given to understand, though I may be mistaken, that one of the side effects of cerebral palsy is extraordinarily painful periods, which this kid would have no way of understanding or coping with. I'm not saying that it's the right thing to do, but nor do I think that this is simply about "convenience." Quite frankly, I don't think any of the articles I've seen give enough info to judge.

I won't judge the situation, but I really think the mother has her daughter's best interests in mind.

A hysterectomy would be out of the question even if the girl had the capacity to consent. A female's uterus is never her own property to decide what to do with. I guess I'm just a bitter transgendered person with a uterus that is invading my space and causing much unnecessary stress.

"I think society's attitude should be to respect and accept the disabled but not to encourage its increase."

"Spare her the pain of menstruation? Rights for the disabled? Decisions best left up to the mother and the medical professionals? Meh, whatevs. Now, eugenics? Now there's an idea I can get behind!"

Hmm.

If someone's genes end up leaving her never able to give informed consent to sex, and her caretakers discourage her from passing on those genes not by sterilization but by managing to ensure she doesn't get raped in the first place, is that eugenics? It does end up discouraging the increase of disability in the population, after all.

Likewise, what if a couple discourages the increase of disability by not trying to disable their next baby (like some other people do a la http://www.slate.com/id/2149854/ or doing the damage after birth)?

Or do ways to discourage disability not deserve to be lumped together after all?

"Do we have the right to decide the fate of disabled youth?"

This is not even the right question to ask. Its emotive and misleading.

People really should get their facts straight on such a sensitive topic before posting, much less, leading, on it.

Well done to whoever posted those facts somewhere in the thread above (which seem to have been largely ignored in the usual rush to judge).

We expect sensitivity in the abortion debate which contends 'rights trumping rights', we should at least bother to encourage that here.

One day this child will be without her parents. Given what has happened to severly disabled women in such circumstances, perhaps we would all be happier leaving her to the 'fate' and the pain and trauma she will so 'obviously' be able to handle? The carers whom she can obviously 'rely' on to adminster the pill - the side effects of potential thrombosis in such cases, not withstanding.

How about WE give the mother the benefit of the doubt of having considered all the worries and daily care of this severely disabled child, having factored in all the options avialable with the wealth of experience from various doctors and refrain from the assumptive patronising tone we accuse forced pregnancy advocates of adopting when they assume women havent 'thought it all through properly'.

"How about WE give the mother the benefit of the doubt of having considered all the worries and daily care of this severely disabled child, having factored in all the options avialable with the wealth of experience from various doctors and refrain from the assumptive patronising tone we accuse forced pregnancy advocates of adopting when they assume women havent 'thought it all through properly'."

Meanwhile, the inaccuracy with comparing this case to abortion too much is that a fetus or embryo is part of the woman or girl carrying it and Katie Thorpe is a separate person instead of part of her mother. The equivalent of giving a pregnant woman the benefit of the doubt in an abortion case is giving Katie Thorpe the benefit of the doubt in this case.

You know what I think?

Katie Thorpe is a private individual with a private medical history. This isn't institutionalized eugenics - this is one family, charged with the care of their child, making decisions for her future.

It's not my business. It's not your business. It's their business.

Unfortunately, while Katie Thorpe is a private citizen, her medical history is clearly no longer private. (though there should be investigation and punishment in how that came to pass) Since this is now in the public eye it's important to talk about it. Katie and her family are going to have to face the knowledge and judgment of the public for the rest of their lives, at the least it should be tempered by understanding.

A number of posters seem to be missing that Katie can't make her own decisions and is unable to consent, someone up thread pointed out she supposedly has the mental capacity of an infant. As that's the case, the judgment of her guardian is a substitution for hers. She's not being restricted from making her own decisions, caring for herself based on the decisions she makes is not possible, it's not on the table. We're all theorizing how this would affect her based on our own assumptions and interpretations of the information available. From what her mother is saying, she does not have the capacity to consent to sex, let alone reproducing. That shouldn't be what this is about. As for how it will affect Katie, her mother has a better grasp of how it will effect her then either the courts or theorizing strangers. I don't see anyone arguing her mother is unfit to care for her altogether, so we should trust her judgment, particularly since there's little else to go on.

ShelbyWoo: In that vein I wasn't arguing that her menstruation would be no more complicated than her incontinence. I was repeating the content of the BBC's interview with her mother. I, personally, have no idea.

If someone's genes end up leaving her never able to give informed consent to sex, and her caretakers discourage her from passing on those genes not by sterilization but by managing to ensure she doesn't get raped in the first place, is that eugenics? It does end up discouraging the increase of disability in the population, after all.

Wait, what? How on earth does a hysterectomy ensure that a woman is not raped?

And if you're not referring to the case at hand but to some weird fantasy scenario, I haven't got the first clue what your point is. First of all, you can't ensure that someone is not raped, no matter what you do, with the exception of killing that person, which I imagine we would not consider to be an actual option. Secondly, if we could somehow ensure that a person is never raped, why wouldn't we do that for everybody? Since no drastic surgery could ensure such a thing, I assume that we're employing some kind of magical forcefield, and once those are invented we really ought to distribute them worldwide. Thirdly, no, preventing rape is not eugenics. It's the right thing to do. And fourthly, even in your scenario, why are we more concerned about the pregnancy than the rape? Reproduction could be avoided even in the instance of a pregnancy by rape through abortion. Personally, I'm a lot more concerned about the sexual abuse. And often with the severely disabled, a pregnancy is the only way that sexual abuse is brought to light and therefore has the opportunity to be ended. Obviously I'm not condoning impregnation through rape, but really confused at the idea that such a pregnancy would be the problem and not the rape itself.

"Katie Thorpe is a separate person instead of part of her mother"

Not really. Katie is totally dependent on her mother.

And as for the suggestion we take a chance, wing it and if she gets pregnant well thats ok then - sending her off for an abortion is a breeze and all part of the process in establishing sexual abuse. Christ on a bike. And some think the mother is making a horrific decision. Think about what you are saying and then apply it to the living breathing sentient human beingS in this case. The mother being the one who wants to do the very best for her daughter and protect her.

The commenters for whom this is all an intellectual exercise are driving me crazy. We can't, as outside observers, have an informed opinion on what is best for this girl or her family. It is a private decision that has to be made by her legal guardian and her medical providers.

The right to privacy. Very important. It keeps the peanut gallery out of our bodies.

Actually, Alison, I don't think that I said any of that. It's a nice purposeful misinterpretation, though, and one that I expected to see.

ekf:

I think we hear less about medical procedures on disabled sons for the simple reason that boys don't have periods and can't get pregnant. I imagine these sorts of surgeries happen less for boys but I would be curious to know more.

all:

I really think this decision is the caregiver's and the medical community's. If we start interceding in cases like this I am scared we are moving down the same path as anti-choicers and those who tried to control Terri Schiavo's right to die.

The road to hell is paved with good intentions.

First, thank you Shel, for your passionate, personal, and incredibly moving comments.

Now, @ Cara and in defense of Alison:

Alison's post was a fair reading of your post. You said, "How on earth does a hysterectomy ensure that a woman is not raped?" And then you (sort of) discussed the distinction between rape and pregnancy.

You are correct that the hysterectomy has nothing to do with preventing rape. It does, however, prevent pregnancy - and preventing pregnancy obviosly means preventing reproduction/passing on of particular genes (assuming the pregnancy is carried to term).

So, the question for you and others who see this decision as motivated by eugenics is: whether preventing pregnancy by means other than a hysterectomy would still be described as eugenics.

IMO, this is a case by case issue. At one end of the spectrum, it's wrong to categorically sterilize every "disabled" person. At the other end, it's also wrong to prevent a competent guardian from making private medical decisions for a person (of any age) who is UNABLE to consent to or comprehend medical decisions.

But there are cases that fall somewhere in-between.

In this particular case - the goal is to eliminate menstruation because the child is extraordinarily sensitive to pain and thus even "mild discomfort" each month would be agonizing for her.

The question is, why are people so quick to want to take sterilization off the table? If the girl herself was mentally competent and decided that SHE didn't want to have periods or reproduce, and after being advised of the risks and alternatives, she chose a hysterectomy - would people cry eugenics?

If so, why is it ok to inquire about the woman's reproductive motivations when discussing steriliaztion, but not when discussing abortion? Both are permanent decisions. Sterilization terminates the uterus and abortion terminates the pregnancy.

IMO, my womb is mine and I can do whatever I want with it. In this case, the girl can't make the decision for herself, so her competent guardian has.

Why do we even care if this girl becomes infertile? She is never even going to be able to comprehend the concept of fertility. Not every uterus has to be used for reproduction. Not every gene must be passed down. Those decisions belong to the people who possess the uteri and the genes - or, as in this case, those who are legally responsible for making medical decisions for them. Frankly, I don't see any other way to handle this type of decision.

I just read an article about this for one of my women's studies classes. The article was from 1995, but some of the issues involving reproductive rights of the disabled are prevalent today. It talked about how people with disabilities can lose benefits if they marry and that sterilization without consent tends to be fairly common. I suppose it is up to the particular family, but it doesn't seem fair to not have control over your own body. This procedure sounds very painful and unnecessary and I think the person involved should be informed of their situation rather than being sterilized without their consent because we are all human beings with feelings and rights.

"A number of posters seem to be missing that Katie can't make her own decisions and is unable to consent, someone up thread pointed out she supposedly has the mental capacity of an infant. As that's the case, the judgment of her guardian is a substitution for hers. She's not being restricted from making her own decisions..."

One intelligent argument I've seen is that medical advances in the future may help some of these individuals become able to make their own decisions. What if removing baby-trapped-in-a-15-year-old-body Katie Thorpe's uterus in 2007 means restricting adult-in-a-40-year-old-body-in Katie Thorpe from making her own decision in 2032 about whether or not to keep her uterus?

"'If someone's genes end up leaving her never able to give informed consent to sex, and her caretakers discourage her from passing on those genes not by sterilization but by managing to ensure she doesn't get raped in the first place, is that eugenics? It does end up discouraging the increase of disability in the population, after all.'

"Wait, what? How on earth does a hysterectomy ensure that a woman is not raped?"

Re-read what you just quoted. A hysterectomy doesn't ensure that a woman or girl is not raped. Trying to prevent a woman or girl who can't consent to sex from being forced to have sex is (among other things) trying to ensure that she is not impregnated (unless someone forces IVF on her, I guess).

"First of all, you can't ensure that someone is not raped, no matter what you do"

But you can try, and you might succeed. IRL many people do try to protect ourselves and each other from getting raped, and we don't *all* end up getting raped anyway.

"And fourthly, even in your scenario, why are we more concerned about the pregnancy than the rape?"

I was thinking of how some people out there think passing on certain genes is so much more important than the well-being of the people who already have the genes...

"You are correct that the hysterectomy has nothing to do with preventing rape. It does, however, prevent pregnancy - and preventing pregnancy obviosly means preventing reproduction/passing on of particular genes (assuming the pregnancy is carried to term).

"So, the question for you and others who see this decision as motivated by eugenics is: whether preventing pregnancy by means other than a hysterectomy would still be described as eugenics."

Yes, that's exactly what my question was.

"'Katie Thorpe is a separate person instead of part of her mother'

"Not really. Katie is totally dependent on her mother."

Hmm...interesting point of view.

If you're totally dependent on your caretaker and he or she has sex with you without asking, would that be that rape (because he or she didn't ask you) or masturbation (the way rubbing the genital parts of himself or herself without asking them would be)?

"It talked about how people with disabilities can lose benefits if they marry and that sterilization without consent tends to be fairly common."

Losing benefits if you marry was a reproductive rights violation? I thought that bit came from the "you don't need our help, your husband will provide!!!" problem (instead of the "you don't deserve our help if you have a baby!!!" problem like some other things are). You know, like when non-disabled welfare recipients lost benefits if they married. I've even heard of elderly lovers cohabitating instead of marrying lest their Social Security benefits get cut.

Oops, typo. That should be "What if removing baby-trapped-in-a-15-year-old-body Katie Thorpe's uterus in 2007 means restricting adult-in-a-40-year-old-body Katie Thorpe from making her own decision in 2032 about whether or not to keep her uterus?"

I don't know, Mina, I feel like that's my entire problem with this conversation--we haven't a clue. We just don't have the info that I assume--I hope her parents and doctors have.

Are her menstrual periods going to be a major burden to her? Is there good info to suggest they might be? We don't know.

Have other methods of dealing with that burden, if burden it be, been considered? Are they unworkable because they carry higher risks to her, or because it's not physically feasible for her, or because they wouldn't work as well for her? We don't know.

What is the scientific prognosis on medical progress in dealing with this type of worst-5% cerebral palsy? We don't know (unless a specialist wants to weigh in).

With all these questions unanswered, I don't think we have enough to go on to know what the hell is happening or why. I think--I hope--her family and doctors have more information than we do about all these questions.

Leaving aside the whole cultural issue of caretaking, and how fucking unreasonable it is of any given society to expect anybody, including aging parents, to spend their whole lives providing the kind of intensive care that people like Katie need. It's an inhumane system, it's unworkable, I can't stand it, it's an extension of the "good mothers/good daughters are willing to dedicate their entire lives to the well-being of their children/parents" philosophy.

That isn't a helpful comment, though, in this situation.

One intelligent argument I've seen is that medical advances in the future may help some of these individuals become able to make their own decisions. What if removing baby-trapped-in-a-15-year-old-body Katie Thorpe's uterus in 2007 means restricting adult-in-a-40-year-old-body-in Katie Thorpe from making her own decision in 2032 about whether or not to keep her uterus?

CP is caused by damage to the brain, typically from lack of oxygen. From what we know, she is severely, if not profoundly, mentally disabled. There isn’t a cure for that extent of damage to the brain, there just isn’t. The treatments available for CP treat the physical symptoms only but they don’t repair the damage to the brain. We have just begun to understand the workings of the brain so that’s not to say it will never be “cured,� but there are NO indications that medical advances allowing her to develop to a cognitive ability to make decisions are coming anytime soon…and I can almost guarantee that the severely mentally disabled will not be the first folks to benefit from those medical advances when they come. Until then, someone MUST make decisions for her.

What is the scientific prognosis on medical progress in dealing with this type of worst-5% cerebral palsy?

Unfortunately, the prognosis for any person with any severity of CP is the same: they won’t get any worse. Other then treating some of the physical symptoms, that’s it, sadly.

Also, just an FYI, CP is not a genetic disorder therefor it can’t be eradicated with eugenics, so that argument has no bearing on Katie or others suffering with CP.

An addendum to my comment: stem cell research has shown promise in treating brain damage, but who knows if this will ever lead to accessible treatment for Katie (and that's mostly due to the restrictions on stem cell research, imho)

The arguments seem convenient rather than accurate.

THIS girl is so severely disabled that it would seem incredible were she to ever voluntarily have children. It is reasonable to conclude it will never occur. Removing (or not) THIS girl's uterus, therefore, has zero effect on eugenics, or the future number of disabled children, even ignoring the cp-not-genetic issue.

Similarly, THIS girl has too little cognitive ability to make her own medical decisions. So any decisions made on behalf of THIS girl have zero effect on the number of cognitively functional disabled people who are denied the ability to make their own decisions.

So why accuse her caretakers of eugenics, when it doesn't apply here? Why compare her to people who don't get to make their decisions (even though they can) when it doesn't apply here?

Mina:

I think her caregivers have to make decisions based on the current realities of the situation and not what is hypothetically possible in the future.

If medical technology is able to restore her cognition in 25 years, it's equally likely it will be able to restore her uterus.

But to repeat my earlier point, I don't really think this is any of our business.

Sailorman, eugenics was brought up, because a poster above intimated that they thought all disabled people ought to be prevented from reproducing.

FYI - the Guardian had an article on this situation today, and they clarified that the girl is at, and will always remain at, the mental age of a 6-month-old baby. She cannot consent to any sexual activity, and has not shown any recognition of her mother, or any awareness other than immediate physical stimuli.

The mother also talked about the option of birth-control pills, but said that from her understanding the injected versions tend to have significant side-effects. One real risk cited was DVT, which is a real risk as the girl is immobile. In any case, in terms of costs, Katie could be put on the birth-control pill indefinitely, as it is freely provided in Britain. The operation would also be NHS-paid for, and the carers - both those provided by the NHS and those paid for by Katie's parents - would be needed whether she has the operation or not. It isn't a matter of money. If Katie had a chance of living a normal life I could understand, but she doesn't, and I don't.

As far as I can tell, the mother seems genuine in her desire to do what is best for her daughter. The proposed surgery will not take something from the girl that she would have otherwise had - she would not be able to have a child, nor have consensual sexual activity - and, while it is a significant surgery, is intended to alleviate her discomfort over the long-term. Some people have commented that maybe her periods won't be 'so bad', which I find puzzling. Some people have no discomfort, true, but they are few and far between. The majority experience at least mild discomfort, and this child reacts to such stimuli in a frightened and upset manner. What is the chance that she goes through the hormonal rollercoaster with the added bonus of cramps and back pain and nausea and is *not* frightened and in pain for significant periods of time?

It makes me wonder if the people arguing so vehemently against this procedure really do have her well-being in mind, or are just offended at the idea of someone doing something for practical, rather than idealistic, reasons. Will Katie be somehow 'lessened' by this procedure? She was never going to have children, never going to have sex, and never fend for herself. Those things do not make her any less of a woman than the removal of an organ that she will never use, and will likely cause her pain and confusion for a large portion of her life. Is it ideal? No. But, then, neither is Katie's CP, nor the process of menstruation itself. It's all very well to talk in generalities, but all of that high-spirited talk breaks down when you actually have to apply some of it to actual living, breathing people.

"...then other issues like problems with your bladder because it doesn't have a uterus to hold it in it's normal place anymore..."

"...The proposed surgery will not take something from the girl that she would have otherwise had..."

I got the impression that hysterectomy would take the helping-hold-the-bladder-in-place thing from the girl that she has now.

Mina -

"...then other issues like problems with your bladder because it doesn't have a uterus to hold it in it's normal place anymore..."

Katie is already doubly incontinent, therefore she has those problems with her bladder already. Therefore, the hysterectomy will not affect her in that manner, as she's dealing with that issue regardless.

I disagree with automatic, radical surgeries for the disabled, but for completely different reasons than those cited.

I don't think this is misogyny or for the primary purpose of eugenics or other nonsense. Fact is, severely disabled people are like infants. They cannot communicate about specific problems; they cannot, on their own, alleviate their pain; and they are confused by illness.

I agree wholeheartedly with AnnaJCook. Why not just give her Seasonale?

A young woman in Australia is severely disabled. Her parents removed her uterus and breast buds so she would not develop an uncomfortably large chest or get pregnant. Both are noble goals, but we live in 2007, not 1679. We could wait for a girl to develop; if she has a very large chest, she could get a reduction (as would a developmentally-normal 18-year-old would). If she has very painful cramps, she can take the Pill (as would a developmentally normal 18-year-old).

I do not take issue with parents who make medical decisions on behalf of their children who cannot do so. Hello - that's part of parenting. I do, however, take HUGE issue with parents who make medical decisions that a "normal" person would not make. Why not a Pill instead of a hysterectomy? Why not a breast reduction instead of a mascetomy?