What a wonderful interview with a truly inspiring person! I love how Laura emphasizes that thinking of disability shouldn't be seen as a matter or charity or a private problem, but rather an issue of justice facing all of society.

Those of us fortunate enough to be living without a disability need to remember that this is more or less a temporary state: illness notwithstanding, if we are lucky enough to grow old, almost all of us will need physical assistance or accomodation of some sort, whether for mobility, sight, hearing, and so on.

Laura also brings up what I also thought was a very important point about the "Ashley X" case most of the press missed: that if Ashley was a boy with a similar condition, probably no one would have suggested castration and growth-attenuating hormonal treatment to keep him small, easy to handle, and prepubescent/desexualized.

Many of the comments I read elsewhere about the Ashley case - and the gist of her parents' rationalization for putting her through this mutilation - sadly seemed to express that the girl would be "so much better off without the burden of being female." How awful.

when i first heard about ashley the "pillow angel", i thought it was great that her parents want to do right by her (i've worked in small institutions, and even the small group homes can be pretty soulless). but i also thought, "would they desexualize a boy for their own convenience?"

like ms. hershey, i don't think they would.

Not to open the whole Ashley can of worms again, but I really don't understand how Ms. Hershey thinks the family can keep Ashle at home and continue to take care of her as they grow older and weaker without keeping her small. I agree a male Ashley wouldn't be castrated, but that is because its much harder to rape and inpregnant a man than a woman, and a penis does not give a man cramps- which, for the Ashley-type disability, cannot be explained as such.

Otherwise, an interesting look at an interesting woman.

I'm not so sure that the type of parents who'd do that to their kid (and I can definitely see the rationale, especially since Ashley has the mentality of a 3 month old baby and will never improve) wouldn't have a boy castrated.

Keep in mind that castration can be accomplished with significantly less bodily invasion than what Ashley had done to her. These days, that's the normal method (and it's usually done medically for people with androgen-dependent tumours, like prostate cancer. Considering that there are parents out there who will have their children injected with Lupron (a chemical castration compound, exactly the drug used in prostate cancer treatment) as a quack remedy for autism, I think it's entirely within the realm of possibility.

I'm not so sure that the type of parents who'd do that to their kid (and I can definitely see the rationale, especially since Ashley has the mentality of a 3 month old baby and will never improve) wouldn't have a boy castrated.

Keep in mind that the normal method for medical castration these days (which is usually performed on adult men with androgenic-dependent tumours, like prostate cancer) is chemical, and much less invasive than what Ashley went through. Considering that there are parents out there who will have their children injected with Lupron (a chemical castration compound used in prostate cancer treatment) as a quack remedy for autism, I don't think it would be impossible, actually.

You know, I'm a pretty radical feminist, but I don't see what's wrong with the Ashley case. She has the mentality of a three month old infant. How is someone like that supposed to deal with all the complications of puberty? Infants cry when anything happens, from being in pain, to being bothered, to being hungry. What Ashley's parents did for her was, in my opinion, humane. I do not think it's appropriate for all disabled people, obviously, but this is an extreme case. And if it were a boy, who's to say his parents wouldn't also do this? It's not fair to say that if we don't know it for sure.

Plus there's the whole sexualized thing. Her family has a history of large breasts, and we all know how uncomfortable those can be, especially for someone confined to their bed all the time.

I think people are a little quick to judge the parents in this case.

Over on the BBC forums about the Ashley case, something of a subthread emerged reacting to this comment:

"She's denying her daughter her right to have kids, and be loved to the full. Its wrong. She's assuming no one will want to marry her daughter. Its cruel, and selfish."

I wouldn't be surprised if this poster's one of those people who calls it "loving" when parents marry off little girls to "good providers," no matter if the child brides are disabled or not...

If we accept that Ashley X has a rare type of disability, then we must consider the likelihood that her prognosis may not be reliable. In otherwords, 9 year old Ashley may continue to develop intellectually, experience a developmental "spurt", etc. Ultimately, it is conceivable that she may be able to communicate with the use of augmentative communication technology. Or, she might not.

In any event, by age 6 (when her "treatments" began) everyone in Ashley's life had given up on her. Yet hasn't history shown us that physician's do not always know what's best for bodies seen as "inferior"? So why is it that some feminists accept without question medical opinion that deems a 6 year old disabled girl hopeless, recommending the surgical removal of her womb, the cutting of her breast buds and large doses of hormones over an extended period of time?

Where are the protesting voices of mainstreams feminists on this one? Isn't this little girl still one of us? She may be flat-chested, she may be womb-less, but in about 10 years, won't Ashley still be a woman?

"If we accept that Ashley X has a rare type of disability, then we must consider the likelihood that her prognosis may not be reliable. In otherwords, 9 year old Ashley may continue to develop intellectually, experience a developmental "spurt", etc. Ultimately, it is conceivable that she may be able to communicate with the use of augmentative communication technology. Or, she might not."

Good points. That's why I disagree with both the "Ashley's definitely hopeless" and "Ashley will definitely be marriageable" extremes.

I read the BBC thread quoted as criticism against another extreme; the "Ashley will definitely NOT be marriageable" extreme that is underlying all of her "treatments".

Noone can be certain as to what the future has in store for Ashley. But we do know that the "treatment" carried out on Ashley without her permission limits her potential choices in the future. And that is a crime.

. it simply says leave the matter open for now...is actually see where the claimWhat is your position on the "Ashley will definitely not be marriageable" extreme.
g

"She's assuming no one will want to marry her daughter. Its cruel, and selfish."

I read the BBC thread quoted as criticism against another extreme; the "Ashley will definitely NOT be marriageable" extreme that is underlying all of her "treatments".

Noone can be certain as to what the future has in store for Ashley. But we do know that the "treatment" carried out on Ashley without her permission limits her potential choices in the future. And that is a crime.

Yet hasn't history shown us that physician's do not always know what's best for bodies seen as "inferior"?

If by history you mean "the rare stories in which the doctors were wrong" then you're right. It's very inspiring to read about people who the medical establishment gave up on, but whose parents refused to heed the common wisdom and at the end turned out to be right. It makes the news a lot more than the far more common case in which the medical establishment is right and the parents waste time, money, and energy in vain.

if Ashley was a boy with a similar condition, probably no one would have suggested castration and growth-attenuating hormonal treatment to keep him small, easy to handle, and prepubescent/desexualized.

Ah, the "everybody knows this to be true" defense. It's obvious to someone with your extreme anti-science bias that the medical establishment would never allow this to happen to a boy, so it must be true.

I don't remember why they removed her uterus, but they removed her breast buds because a) not even being able to move, Ashley can't shift positions when she's asleep, in which case breasts could cause serious discomfort to her, and b) Ashley's breasts aren't going to be used for anything, so they might as well remove them to preempt the risk of breast cancer.

One of things that concerns me is that Ashley keeps being compared to a three month old. Three month olds do not recoil at the sign of blood - they have no awareness that blood is unusual or worrisome, so on this 'fact' alone she is either not like a three month old or her parents are mistaken. The parents report she does not recognize their faces and yet she has preferences for particular animals at the zoo - this does not jive. She is a pillow angel and stays wherever you put her happilly and yet she moans with discomfort when she wants to be moved?

Ashley cannot communicate thru words. Her physicality is severely compromised. No test can see inside her head and determine what of her world she understands. To say she is like a three month old is so disrespectful to the person Ashley is and could develop to be.

Tests that have long been used to determine developmental age are so out of kilter with reality. My son tests at an IQ of 43 and should be unable to do much in the way of self-care and yet I use him as my PCA. ( I have a spinal cord injury.)

My son is 23 and I will say he responds to things when he is very emotional like a three year old, or his reading skills are on a pre-school level - but I would never equate his age with either of those ages because he has the life experiences of a 23 year old. He has observed his surroundings for 23 years and made 23 year old conclusions - some of which he has no way to communicate to me because his language skills are on par with a four year old.

Ashley may seem like an isolated case - a little girl more severely disabled than most people with disabilities - but she is like all of us with disabilities (and who are women) - dismissed for what is believed we cannot do.

My question is about money. I can see Jen's point about how aging parents would have difficulty caring for Ashley. Is it the case that their insurance would cover these medical procedures, but not round-the-clock home health care? If so, that's what I would pinpoint as the root of the problem. Of course her parents are worried about taking care of her--I imagine that they're terrified about what's going to happen to her should they predecease her. We should have a health-care system that would alleviate those worries. But we don't, so here we are.

I'm with Mary B re Ashley. For one thing, just because she's physically unable to have children, and she will never develop breasts, does not mean suddenly that she's going to have a "bad" life (assuming she ever develops sufficient cognitive faculties to communicate with the rest of the world). Since when is a woman defined by her ability to reproduce? Since when is a woman defined by having breasts? Ashley's parents decided that she would likely be more comfortable -- and healthier -- not having breasts, and not getting periods. I can't say I blame them. Breasts and periods are as much of a hassle as they are a benefit. For those of us who may someday wish to have children, they're a necessary evil. But there's nothing inherent about getting my period that makes me a woman (in fact, I dislike it so much that I usually skip it using my birth control pills -- I certainly hope no one here would insinuate I'm somehow less of a woman for taking continuous birth control). And my breasts are on the small side -- I hope larger breasts aren't what make a women either.

If Ashley had any indication whatsoever that she had a preference, or was even able to have a preference in this matter, you bet I would jump right on the condemnation bandwagon. But even if she ever grows up even a tiny bit every year... she might ultimately be the mental equivalent of, what, a four-year-old? After years and years and years of painful menstruation and painful puberty and quite possibly breast cancer? And then, what? Would she actually go and have kids? Would she introduce boyfriends to her parents?

None of these things is NECESSARY to live a happy and fulfilled life. Ashley's parents did what they could to keep her happy and comfortable, and they only did it after lots of agonizing, and with her best interests at heart. And, hell, who are we to condemn them for making their lives marginally easier? They've given their LIVES over to taking care of her. I'm not going to begrudge them one very small accommodation.

Massive quanitites of hormones given to a young child whose brain may not have stopped growing has unknown consequences. Previously these hormones have only been given to young women who have reached adult height. Ashley chance at maturing in any way may have been lost to her parents "one very small accomodation."

And what happens if this one small accomodation doesn't make Ashley the easy to care for child they hope for - what next? What other useless organs or appendages can be rid of next?

What about the next Ashley who is born? Her parents already sai they wih they had done it sooner. Wil it next be a 3 year old? A newborn? When do we determine a child is no longer going to grow?

My son who is adopted was given no chance of survival due to his mother's cocine addiction. Until he was 5 he ws more like an infant or toddler than a young child, but suddenly he had a physical and mental growth spurt. How mamny children will not have the opportunity to have thri growht spurt because we prematurely decide they have no future and "very small accommodations" can be helpful to the parents.

EG, Ashley's parents live in Britain, so insurance isn't an issue. It's not a question of insurance, but of ability to care for her.

Xuxan, anecdotes don't really count. Unless you can show that the growth stunting hurts Ashley - the "ew" argument doesn't count as "showing" - you're putting your politics ahead of Ashley's well-being.

No where have I read (and I think I have read everything in print for public consumption) that Ashley's family has lived anywhere but in Washington State.

Growth hormones in the quantities given stunt growth by causing premature aging. Ashley brain will stop growing as well as her bones. Her chance at a future different that what what her present is have been dashed.

First, you're right about Washington State. I think I just read it first on the BBC, so I assume it was in Britain.

And second, brains don't grow. Neurons undergo a final division before birth. The process of learning is based on creating new synapses, which has nothing to do with growth stunting.

Xuxan, that was one point out of like five I made in my comment. Did you focus on the one because you had no rejoinder to the others?

Who are you to say that Ashley's life is "over" if she doesn't develop sexually? And the fact that she remains small is similarly no argument that her life is suddenly awful and bad and meaningless -- unless you also want to argue that midgets are "less human" than us tall folks.

The point about the unknown effects of growth hormones is valid. It's a consideration that should weigh heavily in a parent's decision of this sort. Equally valid is the concern of breast concern, which was a consideration they also took into account.

If there's a possibility that she may have developed her brain further before the treatment, why are we suddenly discounting the possibility her brain will further develop now? And if that's not the concern, but rather the concern is that she won't be sexually developed, then I take offense at the notion that a person is only a fulfilled human being if, essentially, capable of giving birth (or, presumably, impregnating). I know infertile people who are no less "people" for their inability to add to the numerous mouths to feed populating this planet.

I'm probably swinging a stick at a hornet's nest with this but how many of the feminists who post here would have been upset if the parents of Ashley had realized from an early ultrasound this would have been the case and aborted her in order to "spare" her a painful life and the mother the burden of going through the pregnancy?

I bring this up not to be cruel or to say people with disabilities shouldn't live, but as a feminist issue isn't it to us to say that whatever the family feels they should be doing is their business and no one else?

Ashley is her parent's responsibility. They are listenign to what their family doctors are telling them and no, they aren't taking the hopeful route they are taking the route they feel is best for them. They have to take care of her, they have to pay for her they have to live with their child for the rest of their lives. If it turns out that years down the road they were wrong that aftermath is for them to deal with.

As someone pointed out earlier, we often hear about the cases where the parent's ignored the doctors and their child over came their disability, hell, I knew a friend in college who, when he was eight, was told he'd never walk due to a spinal deformity and yet with mental determination he proved his doctors wrong and we had Japanese class together.

But those are the rare cases and because of such they get much airplay. No one wants to hear about the people who accepted the diagnosis, those stories are far too depressing.

I can't comment on whether they love their child or are just selfish. Whether or not they did this in order to make her life more convenient for them or for her but guess what--SHE'S THEIR CHILD, not ours. This falls in line with judging mothers for every little thing they do that makes them Bad Mothers, except in this case it can be taken as Bad Parents and it's on a global scale with everyone throwing in their two cents.

These are never easy decisions and you can't judge the case from the few facts we are allowed to know.

I made no mention of her stunted height or removal of her ability to have children as I don't see those as the major issues. I don't see her life as over if she is short or can't have children.

I see the primary issue as the complete disregard for her as a person and the consistent description of her as like a three month old.

She is not three months old, she is 9 years old. And although she may not experience her world in the typical manner of most 9 years olds that doesn't make her any less 9 years old. She still has nine years of life experience.

Because a person cannot communicate in away we understand does not mean they do not think. Take away Steven Hawking's computer generated voice and how much of his world would we understand? Ashley is very unlikely to be another Steven Hawking but does that mean she is deserved of any less respect for her integrity as a person?

People are not born to be shaped and cut into what makes it most easy for our parents to raise us.

It's not especially hard to tell Ashley from someone who has normal mental development but suffers from motor neurone disease. Stephen Hawking recognizes people; it's possible to tell that via his eye movement or hand gestures even passively. In contrast, Ashley's parents don't even know if she can recognize them. Before Hawking had his computer aid, people could communicate with him by holding a glass device that had letters printed over it so that he spelled out words by looking at letters. It was clumsy, but it worked. Ashley doesn't communicate in any way. People who suffer from motor neurone disease have detectable problems in their spinal cord, while severely retarded people like Ashley don't.

I'm with UltraMagnus on this one. I was recently finally swung over to the pro-choice side of the abortion debate because of several articulate arguments about things like choice, and autonomy, and about trusting people who have to live with the choices to make the choices that are best with them.

I know this isn't exactly the same thing, but it feels parallel to me. This is a choice they made for their family, and whether the rest of us like it or not, it's not really our say. I feel like perhaps we could get all up in arms about childrens' rights if she had been able to protest this decision, but what do you do in the case of a person who can't make or communicate a decision? Respect the people who have to make the choice, I suppose.

Xuxan, you're avoiding the point. You acknowledge that Ashley can live a perfectly fulfilled life if she is much shorter and smaller than the average human adult. Why can she NOT live a fulfilled life if she doesn't have breasts and regular periods?

"Where are the protesting voices of mainstreams feminists on this one? Isn't this little girl still one of us? She may be flat-chested, she may be womb-less, but in about 10 years, won't Ashley still be a woman?"
One of those feminists is right here, Sharon.

I agree with everything you and Xuxan have said. There's a long, ugly history of medical procedures done not for the benefit of the individual receiving them, but rather for the convenience of the other people around them. Forced sterilizations, overenthusiastic lobotomies--and we could even get into non-medical actions such as footbinding--and even into FGM. In special education (my field), decisions about the student's program are required to be justified by their benefit to the student--not for anyone else's convenience. Why is medicine apparently exempt from this? According to Hershey, one of the parents' two main arguments was that "it enabled them to easily move her around and continue taking care of her." On these grounds, the operations were done to meet their convenience, not the patient's needs. Wrong, wrong, wrong.

"Breasts and regular periods" aren't the only issue here. They altered her medically to keep her small, so it would be easier to care for her. Millions of other families have dealt with children who grew bigger, with and without significant disabilities. Yes, it's difficult, but there is care assistance available--and it's provided to millions of others every day. It's not even a matter of insurance; see this brochure from Ashley's state of Washington for a quick overview of services available at no charge through Medicaid, the school system, and the state. Note that in-home care and family support/respite are among the available services. http://www1.dshs.wa.gov/pdf/Publications/22-822.pdf

Part two of the rationale is just ridiculous: "And they thought it would be best if she never became sexually mature because they said she would be at risk of abuse if she ever did."
Argh.
1. The sex abuse statistics on people with severe disabilities are heartbreakingly high, but sexual maturity is not a prerequisite for sexual abuse. Young children are abused sexually, too, and it's far more common than I wish it were. The lack of a uterus will keep her from getting pregnant, but it won't keep a perpetrator from abusing her.
2. I believe that this action is, itself, an institutionalized example of sexual abuse. A hospital removed her primary and secondary sex organs/characteristics, and not by her request or to save her life. This just kills me.

A for the "doesn't communicate back" = "doesn't understand," and the "doesn't understand" = "doesn't show a need for respect" arguments: Does she not feel? Yes. Might she understand? Might she have some receptive understanding of what's going on in and around her, even though the rest of us haven't figured out how to tap into that? Could she want desperately to communicate in some way and have some tiny bit of control over her life? Perhaps.

And, again as a teacher in the special education field, I can say that people with disabilities achieve skills beyond the "limitations" of their diagnoses all the time. It's not rare. It's rare that a person with total paralysis stands up and walks, but it's not rare that someone with "pre-primer" skills begins performing certain tasks at much higher levels, or that a kid does things "were never supposed to be able to do" (like live past childhood, in Laura Hershey's case).

Children with significant disabilities are no more their parents' property than children without them. If Ashley were playing soccer and reading at a first grade level, then we wouldn't be having this discussion about whose property her body is.

Ashley is a little girl in this that should not be forgotton, but what is most important is the bigger picture.

If what was done to Ashley is accepted treatment protocol for children with severe disabilities, who will be next and why? How old will they be? How severely disabled?

Will the services needed to care for a child with severe disabilities dry up because this will become the preferred (less expensive) method to deal with a child with a severe disability. Will parents be told about this surgery by doctors instead of being told about social services programs?

In the US we engage in a form of genital mutiliation without much thought at all. We are the only country in the world that routinely circumcizes our boys for nonreligious reasons. Removal of foreskin changes the character of the penis and makes sex dependant upon artifical lubrication. There is considerable evidence that it also reduces pleasure.

Penis cancer is rare, occurs primarily in the elderly, and uncircicised men with poor hygiene habits. The solution to the problem is not to cut off the offending piece of skin but to teach better hygiene habits. But we are a nation of fast food and we prefer circumcision.

We are now also a nation that has been the first to enter the frontier of modifying a disabled child's body so she can be easier to care for.

Xuxan:

"Previously these hormones have only been given to young women who have reached adult height."

Actually, the extreme doses of estrogen were given to normal girls before they reached their adult height in the 60's and 70's, to prevent them from being "undesirably" taller than their future husbands.

I will acknowledge that for many years (and it continues today) the medical profession has been inherently sexist and ignorant about women's bodies. However, this is not a group of people we're discussing, it's one person, Ashley. How would letting her keep her breasts and her uterus be beneficial to a girl who doesn't have (and will probably never have) the mental capacity to understand what they're for or to use them in any sense? As TLF said, she is no less of a person or a woman. This is obviously an extreme case, and I am in no way advocating this treatment for disabled people in general, but don't her parents, who have devoted their lives to caring for her, deserve a fair amount of choice in deciding the best treatment for her?

And I agree with UltraMagnus in that this is an issue of trust, and whether we trust Ashley's parents to do what's best for her, based on the limited amount of information that we have.

When the doctors published her case in a medical journal and titled it - "Attenuating Growth in Children
With Profound Developmental Disability A New Approach to an Old Dilemma " it stopped being just about Ashley and became something about all children with the potential to experience disability.

"How would letting her keep her breasts and her uterus be beneficial to a girl who doesn't have (and will probably never have) the mental capacity to understand what they're for or to use them in any sense?"

What bothers me is the implication that body parts are there by someone else's charitable decision to allow them to remain, as though removal is the default option. If she'd been born without a uterus or the capacity to grow breasts, and the parents/doctors did not decide to add them to her body, then I'd defend that decision to the end. But the choice here was to take a drastic action, rather than to leave her body as it was. And to stunt her growth.

And I haven't used my uterus, either. Does that mean I have a responsibility to rid myself of it? No. Why aren't appendectomies considered routine for young children? Because that woud be unnecessarily drastic.

Should we remove the ears of deaf children, or the eyes of those who are blind? Should we remove legs that are paralyzed? (I assure you that paralyzed legs are difficult to dress and make lifting a person much more difficult--but it's quite easy to lift and carry a person who has none.)

And, for the record, I don't place ultimate responsibility for this travesty on Ashley's parents. They have legitimate fears, they probably had a lot of questions that no one could answer satisfactorily (as well as questions they never thought to ask), and I know that caring for their daughter is a big job. What they needed was support from the medical community, from other families dealing with similar challenges, and assurances of long-term assistance. Millions of children with disabilities have grown bigger and gone throgh puberty--it's the rule, not the exception--and most have family members who have grown old. Yes, care is difficult, but I find it terribly disturbing that Ashley was intentionally disabled even more.

"I bring this up not to be cruel or to say people with disabilities shouldn't live, but as a feminist issue isn't it to us to say that whatever the family feels they should be doing is their business and no one else?"

Do you feel the same way about spousal abuse-It's nobody's business outside of the immediate family?
How about cases of physical and sexual abuse of children that occur within families? Aren't these feminist issues?

To say that the treatment of disabled family members is a private matter that feminists should stay out of would be terribly discriminatory and a step backwards for feminisms.

I like this guy's post (according to his profile, he's a sex educator):
http://sexuality.about.com/b/a/257889.htm

It is the parent's responsibility to make medical decisions and to provide care for their child. Because this child will continue to be dependent upon her parents even when she reaches adulthood, then those same parents will still be responsible for medical decisions and daily care when that time comes.
I am baffled that critics are trying to compare this case to cases of people with less severe disabilities. I've read the article in the medical journal, as well as the parents' website and it seems to me that based on the particular circumstances, this family and hospital made a wise choice. Obviously the child is not a 3 month old, but her ability to evaluate and interact with the world around her is similar to that of a 3 month old, that is, extremely limited.
The child finds fullfillment in being held, caressed and cared for by her parents. Frankly, I think it would be heartbreaking, for all involved, if, in the future, the family had to send the child to a care facility where she would no longer receive this dedicated care, simply because the parents could no longer physically manage her.
Furthermore, Ashley's form of brain damage is associated with life threatening seizures at the onset of puberty, her family has a history of fibrocystic breast disease (Painful - I know because I have it) and breast cancer, and for a person with a 3 month old mentality, the pain of menstral cramps is likely to be terrifying and not merely uncomfortable but painful. Her small size, by the way, will also help prevent bedsores, pnemonia (sp?), and urinary tract infections, the risks of which are all increased by a bedridden person's weight.
Some of the criticisms here seem to focus on the need to have faith in a miracle. Personally, I have to agree with Ashley's parents, that taking a proactive, rational approach towards the treatment of a unique individual is the better path. And who knows maybe a miracle will happen 20 years from now. Like Law Fairy said, not having a uterus and breasts or being small won't be the end of the world, and at least Ashley will have been able to live all those years comfortabley with a family who loves and nurters her.
AShley's parents want to increase not just her quality of life, but also the actual legnth of her life.
I can in no way see this particular case as abusive.

Alon writes: "If by history you mean 'the rare stories in which the doctors were wrong'..."

I'm referring to our history in the U.S.; women's history at the hands of physicians who saw female bodies as lacking and performed countless absolutely unnecessary surgeries (including hysterectomies). Sadly, this was not a rare practice.

Alon writes: "Ah, the 'everybody knows this to be true' defense. It's obvious to someone with your extreme anti-science bias that the medical establishment would never allow this to happen to a boy, so it must be true."

I have not previously commented on whether I believe that forms of the "Ashley treatment" on a similarly disabled boy would be more or less
"acceptable" to the public. For the record, I find it notable that the first publicized case is on a female body and I find many of the treatment justifications cited as sexist (and ableist). However, I am not convinced that disabled boys will be safe from similar types of treatments. In fact, I think it's likely that the "Ashley treatment" has paved the way for "Andrew treatments".

Sharon, you might be interested in this quote from the family's website (http://ashleytreatment.spaces.live.com/PersonalSpace.aspx?_c02_owner=1):
"In addition, our understanding is that the growth limiting aspect of the “Ashley Treatment� is applicable to male children. It seems to us that it even makes more sense in their case, since boys tend to grow taller and bigger. In boys hysterectomy will not be an issue; however, since estrogen will result in breast growth, the breast bud removal surgery would still need to be considered."

"Do you feel the same way about spousal abuse-It's nobody's business outside of the immediate family?
How about cases of physical and sexual abuse of children that occur within families? Aren't these feminist issues?"

If a woman chooses to stay with an abusive husband for whatever reason, then sadly, yes, that is her business and there's nothing I can do about that. If she's being restrained or forced then I think the law should get involved and the woman should get the help and support she needs.

Sexual abuse of children is FAR different from this, no one (as far as we know) is molesting this girl, her parents are trying to take care of her the best they can.

We are now also a nation that has been the first to enter the frontier of modifying a disabled child's body so she can be easier to care for.

Xuxan, that's not "why" this was done. This was done to make her more comfortable. Without breast buds she won't have to go through the pain of developing breasts (which can be quite substantial, especially if you have a family history of large breasts, as I believe she does). Without a uterus she won't have to go through the pain of monthly menstruation (which can also be quite substantial and frequent). She won't have to deal with the risk of breast or uterine cancer. She won't have to deal with the risk of pregnancy if, heaven forbid, she is ever raped by some sick twisted fuck. Her parents did this for HER -- that it incidentally benefits them is not reason enough to condemn them.

This is hardly the only case where parents make difficult and controversial decisions for their children -- whether or not those children suffer from decreased mental faculties. If a child is in a car accident and suffers severe injuries, and doctors believe that in order for her to have her best chance at life, her parents must amputate her arm, her parents may very well make that choice. Parents decide whether or not to remove their children's appendices or tonsils. Parents decide whether or not to let their children go through chemotherapy. Certainly, if the children are able to communicate with their parents (as Ashley simply is not, and there's nothing discriminatory about acknowledging the simple fact that she is UNABLE to make her preferences known), the parents will allow the children's desire to influence their decision. But make no mistake -- a final decision on a course of medical treatment is the parents'. We give parents these legal rights, for EVERY child -- not just disabled ones.

Law Fairy, Are you saying that physicians and hospital ethics committees will approve parent requests for such growth attenuation treatments for their nondisabled children?

The fact that Ashley's parents did this to make her easier to care for reminds me of parents that give their Autistic/Autism Spectrum Disorder kids antidepressants and antipsychotics (which all have absolutely horrid side effects- more than the doctors tell you about) just to make them more manageable, agreeable, and docile. Despite the fact that their kids (and people in general who take them) suffer with the side effects of these meds, which include massive weight gain, feeling emotionally numb, carbohydrate cravings, cessation of periods, violent behavior, sleeping almost constantly, heat intolerance, lowered ability to deal with stress, lack of motivation, lack of sex drive, and suicidal tendancies. Those are just the ones I've experienced on not only antidepressants, but antipsychotics, as well. I'm sure there's plenty of others. There's also reason to believe that SSRI type antidepressants increase the risk of breast cancer and strong evidence that they cause brain damage. They don't even know the exact mechanism by which SSRI's work, let alone the long term effects of them. The fact that doctors so eagerly throw this garbage at people and that people so willingly take it or give it to their kids is disturbing, to say the least.

SSRIs do not in fact "all have absolutely horrid side effects." From long experience I can tell you that in my case, and I am hardly alone, they have had absolutely no side effects, and I wish I had been on them from a very early age. Quite frankly, I would far rather develop breast cancer than go back to living the way I was prior to obtaining the necessary medication, and it is depression that causes brain damage, as well as, in my case, sleeping almost constantly, lowered ability to deal with stress, lack of motivatation, lack of sex drive, suicidal tendencies, emotional numbness, and the inability to eat. The reason doctors provide them and that people take them so eagerly is because those of us with depression suffer immensely without them.

Do you seriously expect me or anybody else who suffers in that way to take seriously your remarks that our medication is "garbage?" There is a real prejudice in our culture against recognizing and treating the harmful effects of emotional and mental illness. As a comparison, I have asthma, and nobody has ever referred to my albuterol inhaler as "garbage," even though I could manage without it far better than I can manage without my SSRIs.

I don't know what I would do if my child suffered from severe autism, but I wouldn't dismiss psychotropic meds out of hand, either.

Ultra, you first write:
"but as a feminist issue isn't it to us to say that whatever the family feels they should be doing is their business and no one else?"

However, in your next message, you give examples of exceptions such as "If she's being restrained or forced then I think the law should get involved...Sex abuse is FAR different..."

So it seems we agree after all in that not all matters that happen within a family are nobody else's business, right? The difference between our perspectives is that I include "Ashley X" or "Andy X" treatments as a public and feminist issue deserving of public discussion and opinion, and you do not.

Even Ashley's parents consider this a public issue. They voluntarily brought the matter into the public arena for discussion. They have posted before and after pictures of Ashley in their blog for all the world to see (while hiding the faces of her younger siblings). Although they are not physicians, they suggest the Ashley treatment is something the public should consider for other disabled children, including boys with disabilities similar to Ashley's.

It's a public issue and it's also a feminist issue, as long as feminists care about matters affecting family, health, and children's--both disabled and nondisabled--interests.

Ashley is a little girl in this that should not be forgotton, but what is most important is the bigger picture.

In other words, what matters isn't what's good for Ashley but what's good for your political ideology.

Law Fairy, Are you saying that physicians and hospital ethics committees will approve parent requests for such growth attenuation treatments for their nondisabled children?

It's not "nondisabled." It's "able to communicate consent." Looking at Ashley as yet another disabled child is like looking at all minorities as variants of blacks and then being surprised when Hispanics want minority language rights.

I'm referring to our history in the U.S.; women's history at the hands of physicians who saw female bodies as lacking and performed countless absolutely unnecessary surgeries (including hysterectomies). Sadly, this was not a rare practice.

So you're evaluating this case not by its own merits, but by the merits you infer from looking at completely different cases in history.

EG, Antidepressants are merely a bandage, in many cases, to cover up an underlying problem. SSRIs ARE poisonous garbage. I've been on them, and I've spent a lot of time reading about them and others' experiences on them and withdrawing from them. It sounds like you've done little or no reading on your own about just how horrid they really are. Or how absolutely terrifying the withdrawals are. But the, the majority of people only listen to what their doctor said about something. Very few people actually seek information on their own, or seek a very limited amount, or only read what makes them feel comfortable.

You're also saying that everyone on them is depressed and NEEDS to take them. That's absolute bullshit, as doctors these days consider everything "depression". I was just to a doctor for a suspected thryoid problem that is causing panic attacks and a host of other problems. What does he do? He tries to get me to take antidepressants because he thinks I'm just depressed. I'm not, and I've never been clinically depressed. I will never take them again, and if I were a doctor, I'd be very cautious about who I give them to, because doctors are entirely too liberal in what they prescribe them for.

It's obvious that people, you included, hold entirely too much faith in pharmaceutical companies and the bullshit they spout to get someone to part with their money.

If your really need to take something, there are countless natural things out there that won't hurt you. There's also things called nootropics. Look them up sometime. There are much better things to take than the run-of-the-mill pharmaceutical drugs the average doctor so eagerly prescribes, in many cases.

In absolutely no way was I invalidating depression, what's causing it, or anything else that someone may need a remedy for. But there are better things to take/do. If only your average Joe/Jane wasn't too lazy and/ or ignorant (as many Americans are)to do some really meaningful searching, they would find that out.

One example: They say how people who have had heart attacks should take aspirin to prevent another. Aspirin, in the long term, is harmful to your stomach. There are two things that work much beter. One of them, most Americans are deficient in. Alcar (acetyl L carnatine) is cardioprotective, and is nootropic (nootropics are supposed to have no negative effects). The one that people are deficient in, but is also extremely cardioprotective is magnesium. Those will work much better than aspirin, and will not harm you in any way. I'm sure there are still others.

Another exapmple: Instead of taking NSAI's (non-steroidal anti-inflammatories), which are terrible for your liver, take bromelain. Bromelain is an enzyme found in pineapple, and is a potent anti-inflammatory. And it won't hurt you.

I'm currently taking a drug called Phenibut for my panic attacks insetead of an antidepressant or an bezodiazepine. I hate the first, and I'd have to take the second long enough to cause withdrawal once I quit. And withdrawal from the second is a horrible experience. And the withdrawal from it can even be deadly if done carelessly.

And the original peeve in my first post was about parents drugging up their disabled kids simply to make them more manageable. That REALLY pisses me off, as it has been done to me, and I had absolutely no choice in the matter. I don't think anything should be done to someone just to make them easier to deal with.

And surely I'm not the only one that has noticed that treatment options that are made the most commonly known always have some really nasty side effects/long-term effects, and always support big business? Most people thought (and continue to think) that things like aspartame and sucralose are safe. The rest of use know better, because we have done sufficient, unbiased reading. Now I use stevia instead of sugar and artificial sweeteners. I urge you people to read about stevia, and why it isn't accepted by the FDA as an alternative to sugar and artifical sweeteners.

Most people thought (and continue to think) that things like aspartame and sucralose are safe.

Indeed, as everyone knows, diet soda causes cancer.

And the original peeve in my first post was about parents drugging up their disabled kids simply to make them more manageable.

Well, that didn't really happen. The growth stunting was meant to help Ashley's parents take care of her, an entirely reasonable goal, but the removal of Ashley's breast and uterus was for her own comfort.

"Very few people actually seek information on their own, or seek a very limited amount, or only read what makes them feel comfortable."

Ah, because I disagree with you, I just must not know what I'm talking about. Well, that's a legitimate argument. I actually know quite a bit about SSRIs; not only do I read, but my cousin specifically works on brain chemistry, depression, and anti-depressants. I know about the difficulties in withdrawal, and I'm not too concerned. Just as I plan never to go off my long-term bronchio-dilators, I see no reason to go off my SSRIs.

I'm sorry you've had crappy doctors. I've had crappy doctors too, what with doctors being human beings, but it doesn't mean the medication in question isn't a) necessary or b) worthwhile.

And I trust modern pharmaceuticals too much? Well, let's see. I had scarlet fever and didn't die; I had numerous ear infections as a child and am not deaf; I never contracted measles, mumps, rubella, polio, or whooping cough; I can breathe well most of the time; I no longer suffer the debilitating effects of emotional illness; my mother's migraine medication has alleviated much of the unnecessary pain she's gone through; thanks to medicated creams, my skin doesn't spontaneously crack and bleed; yes indeed, modern medicine has all kinds of credit with me. I see no reason why it shouldn't.

"If your really need to take something, there are countless natural things out there that won't hurt you. There's also things called nootropics. Look them up sometime."

The fact that something's natural says nothing about whether or not it's safe or effective. My depression is natural. Scabies is natural. Poisonous mushrooms are natural. So are peanuts, which are deadly for some people. The fact is that there is no regulation for "natural" treatments; however flawed the US system for drug trials is, I see no benefit in switching from something that works and has been through some kind of testing system to something with no regulation whatsoever. Further, when I take SSRIs, I'm in the care of a trained professional (and yes, I do set a lot of store in the opinions of people who have devoted their lives to studying these conditions) who is aware of any early signals of problems, interaction issues, etc.

It has been my experience that people suffering from depression are not getting the help they need. Whatever alleged "overprescription" is happening seems like a drop in the bucket to me.

As for reading about stevia, I'll pass. I like sugar.

Not everyone has painful menstrual cramps. And the breasts may or may not have caused a significant problem for her. I would have no problem if they did a breast reduction when they had evidence that her breasts made her uncomfortable, or took one of several possible measures if they observed that menstrual cramps made her miserable. They made decisions based on what they thought might happen in the future. Surgery (particularly on people who aren't electing it) should be performed when it's proven necessary. We don't do pre-emptive appendectomies, after all.

Sharon, I hadn't seen their photo slideshow the last time I saw their blog. I'm glad (I think) that you pointed out the obscured faces. That cemented my misgivings more than anything else so far. I guess showing the "normal" kids' faces would be to exploit them, eh?
And does the "Pillow Angels" label put you on edge, too?

"If your really need to take something,"

You know, I've just realized exactly how condescending your tone is by re-reading this phrase. Given that I had just spent a post explaining that indeed, I really did "need to take something," why would you put an "if" there? Because my experience doesn't match your ideology?

EG, thanks for the,

If your really need to take something, there are countless natural things out there that won't hurt you. There's also things called nootropics. Look them up sometime.

quote. Personally my favorite response is that poison ivy is perfectly natural. How I phrase it depends on my mood. When it's good, I just quote the commenter on Good Math, Bad Math who I got it from. When it's bad, I suggest that the anti-science nut in question consume poison ivy.

Ooh, I forgot about poison ivy. (That's what being a lifetime urbanite will do to you, I guess.)

What's Good Math, Bad Math? I'd love to check out a link, if you don't mind.

Alon writes: "So you're evaluating this case not by its own merits, but by the merits you infer from looking at completely different cases in history".

Not at all. Just responding to your portrayal of medical bias and errors as "the rare stories in which the doctors were wrong" by reminding you of historical data showing otherwise.

Btw, although it doesn't seem likely that Ashley spends much time laying prone (remember, she cannot raise her head), in the event that she does, keep in mind that science came up with ergonomic support pillows for large breasted women to lay prone in comfort quite some time ago. Large breasted women do not have to undergo breast reduction surgery in order to sleep comfortably in a prone position!

Alon writes: "So you're evaluating this case not by its own merits, but by the merits you infer from looking at completely different cases in history".

Not at all. Just responding to your portrayal of medical bias and errors as "the rare stories in which the doctors were wrong" by reminding you of historical data showing otherwise.

Btw, although it doesn't seem likely that Ashley spends much time laying prone (remember, she cannot raise her head), in the event that she does, keep in mind that science came up with ergonomic support pillows for large breasted women to lay prone in comfort quite some time ago. Large breasted women do not have to undergo breast reduction surgery in order to sleep comfortably in a prone position!

Sharon, my point was that doctors and parents make determinations for the children all the time, considering the relevant circumstances and particular issues for the child's care. Of course Ashley's treatment wouldn't be appropriate in every situation. That's a big fat "duh." Saying this opens up the door to do this to all disabled kids is a straw man -- if this is the best argument out there, then that doesn't say much for those opposed to the Ashley Treatment.

As for large breasted women staying comfortable, most large breasted women have the cognitive faculties to understand what hurts and why and how to alleviate it. Ashley does not have the faculties, and it's extremely unlikely she ever will. Her parents had to act before she underwent puberty, or they would never be able to take such measures for her comfort. So they could allow her to undergo painful and frightening and confusing physical changes on the off-off-off-off-chance that she might SOMEDAY be able to understand what has happened to her body and appreciate and enjoy being an adult; or they could decide to err on the side of vast likelihood and make her more comfortable and less prone to dangerous diseases/situations.

EG, you're way off. You've taken the crap your doctors and the TV tells you and believed every word, just like a good sheeple. I don't think you know what the hell you're talking about. In fact, a lot of the people here don't. Most of the people here are just sheeple. You obviously fail to see when something's bad for you.

There's no reasoning with fools like you, EG. I take my leave of this place. You apparently don't like it when someone knows more than you. My boyfriend ans I didn't spend years rading about psychiatric drugs, politics, the FDA and safer , more acceptable remedies. Just because the FDA says it's safe, doesn't mean it is. But what do I know? Your cousin works with SSRI's, and the place they work for is either a pharm company, or is paid off by one. They can't POSSIBLY be biased, can they? *snort* Dig your own damn grave. But don't come crying to people who gave you better info when you fuck yourself up taking the garbage your doctors throw at you. All you'll get is "I told you so."

Tokaia, stop projecting. Seriously. People who argue like creationist trolls on Pharyngula are the last people who should use phrases like "There's no arguing with you." Go troll Retrospectacle and tell Shelley that her research into hearing loss is just a front for government atrocities. It won't be any more rational, but it'll be funnier.

And Sharon, the "history proves otherwise" point just underscores the fact that you tend to remember what medical science got wrong. In the past it got a lot of things wrong, and many more things right. Unless you know something about the specific facts of the case, which you apparently don't, you're obliged to trust the system that works more often than it doesn't - at least, you are if you want to be rational.

Tokia,
You really need to stop being so hateful! It certainly doesn't help your arguments and EG doesn't deserve that kind of disrespect. It is possible to disagree and even argue with someone with out being hateful. Personally, I have done a lot of research into mood altering medication as well as alternative therapies, such as fish oil. yoga, and counsling. I know where you are coming from and perhaps when you are more calm you can make a more reasonable arguement with compelling examples. I also know where EG is coming from and her ideas and experiences are also valid. People are unique. Likewise, so are their medical problems and treatments. That is why its important for people to take control over their own health, as well as over the health of their dependents and not to neglect their personal experience or just accept blindly the word of the first person that they come in contact with, be it you or an MD.
And by the way, certain anti-depressants truely do work for certain people.

"Sheeple," "fools," "you don't know what the hell you're talking about." Gee, Tokaia, I can't imagine why I don't take you as seriously as I take people who devote their lives to studying how the brain works.

Your thinking is a closed system: anyone who studies science and medicine has somehow been brainwashed by pharmaceuticals and is therefore unreliable. You completely reject the idea of expertise because it is expertise. Anyone with expertise is therefore made inherently untrustworthy, and those of us who respect the lifelong work of doctors, psychiatrists, social workers, and PhD researchers in neurology, biology, and psychology are somehow "sheep." You think that your amateur reading (and on the face of it, I'm not convinced you'd know how to assess a source's reliability if you had a secret decoder ring) makes you more trustworthy because it's amateur, and you mock me for putting more stock in the work of my cousin, the PhD in neurobiology.

And instead of providing actual arguments, or citations, or thoughtful assessments of ill people's situations, options, and the consequences of their choices, you resort to name-calling and general insult. And then you wonder why your opponent is unmoved.

I recall that when we disagreed on another topic, you announced that I secretly "knew" you were right. You seem to have a very low tolerance for anyone disagreeing with you--or even believing that it's possible to be intelligent, well-informed, and even so to disagree with you. In that case, you're probably right that this board is not the place for you.

tankerton, thanks for the voice of reason--certainly I'm not opposed to people researching a variety of treatments (I myself have found L-Lysine to be helpful for certain things)!

It seems a few people here could use a dose of reality. I have a blog. It's controvercial, and you're likely not to agree with it. But maybe it'll make at least someone think on their own, as opposed to being told what to think.

http://angryreptilekeeper.blogspot.com/

Tokaia:

Just because someone doesn't agree with you doesn't mean that you're automatically the only one thinking for herself. We're all told what to think, to a certain extent, and even people who consider themselves rebels and free-thinkers can become "sheeple".

It's a little insulting to suggest that EG and others don't have a dose of reality just because they choose to base their opinions on other things than you have. It's also wise to look at all sources of information with a skeptical eye.

But maybe it'll make at least someone think on their own, as opposed to being told what to think.

Shorter Tokaia: up is down, white is black, and anti-science obscurantism is thinking on one's own.

Yes, let's all think for ourselves and not be sheeple...and do and think exactly what Tokaia says.

Get a grip, Tokaia. For real. Who the hell do you think you are, George Bush?

Don't let the door hit ya.

~*~*~*

I was going to chime in on the "Ashley Treatment," but The Law Fairy succinctly said everything I was going to say.

One thing I will add to the conversation is the concept of treating the family with the special-needs child as a whole unit instead of singling out the child by herself. It isn't very realistic to treat her like she's going through this process by herself, or that her family isn't profoundly affected and involved. I see it as a symbiotic relatioship: Ashley gets the care she needs in the way she is most accustomed to, and her family is best equiped to give it to her. I think it's safe to assume she would choose the most comfortable method of care she can receive by the people she knows, if she were able to express her choice.

I said: Ashley is a little girl in this that should not be forgotton, but what is most important is the bigger picture.

To which Alon Levy responded: In other words, what matters isn't what's good for Ashley but what's good for your political ideology.

No, what I am saying is what is done is done to Ashley. I don't see any different outcome for Ashley if we condemn or embrace her parents and their choice.

Instead what is important is why and how did this happen and how can it be prevented from happening again. Exactly where did the system fail these parents so that this seemed to them to be the best choice for their daughter? Where did the system fail Ashley? Where are the holes in the dike and how do we close them?

"If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity."

From the "Ashley Treatment" website, a quote from one of the bioethicists that backed their decision. I understand the dilemma of being responsible caregivers for a person in Ashley's situation, having experienced something very similar in a close relative. However...that is a terrifying statement to me, particularly coming from an ethicist. Questioning a human being's right to dignity is akin to questioning that person's designation of personhood at all. If she's a person, then it matters. Period.

laura is such an awesome person. I wish i had the will power that she has. What an honor to know somebody like this. colon cancer