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.