I heard about this today on BBC:
In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little “pillow angel” a manageable and more portable size. The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.
The case has captured attention nationwide and abroad via the Internet, with some decrying the parents’ actions as perverse and akin to eugenics. Some ethicists question the parents’ claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home..
I’m really shocked by this case. I don’t want to be overly critical of parents raising severly disabled kids because I do think there is no good support system in place for them, but I’m shocked that doctors and a medical ethics board were willing to go along with this.
One of the things that really caught my attention was the quotes about breast removal from the blog that the parents have created to explain the surgery:
Ashley has no need for developed breasts since she will not breast feed and their presence would only be a source of discomfort to her. This is especially true since Ashley is likely destined to have large breasts, given her maternal and paternal female lineage; for example, an aunt had a breast reduction operation at age 19. Large breasts are uncomfortable lying down with a bra and even less comfortable without a bra. Furthermore, breasts impede securing Ashley in her wheelchair, stander, or bath chair, where straps across her chest are needed to support her body weight. Before the surgery Ashley had already exhibited sensitivity in her breasts.
And then soon after there is this quote:
Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.
I am at a loss for words :-O :-O
I definitely think this is a feminist issue and a disability rights issue. The the desexualization of the disabled combined with the extremely gendered nature of this treatment just astonishes me. To me feminist reproductive rights advocates should be lining up to challenge this treatment (But if I was a betting women, I’d bet most of them won’t say much.).
I went over to Blue’s site to see if she has responded. She said she will put up a comment soon.
What do you think?
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The whole procedure reminds me of Bonsai Kittens and the fact she has no consent in the matter worries me. The assertion that her breasts sexualize her and put her at heightened risk for sexual abuse is incorrect and worrisome (the elderly and children get abused too).
However, I side with the parents on this one. Menstruation is going to be horrifying to someone who cannot comprehend what is going on. Big tits ARE uncomfortable, especially during development. This is a girl who can’t so much as brush away a stray hair that is bothering her. A smaller body is going to make it MUCH easier for the caregivers to handle the patient. This means that her parents can continue to care for her as they age, keeping her out of the system.
I hope that the medical board is very strict and explicit in the degree of disability for which the procedure can be used in the future.
I have worked with the developmentally disabled and can’t help but feel that this is a huge slide backwards.
Giving a 9yr old a hysterectomy to prevent menstrual cramps?
A mastectomy just “in case” she developers large breasts?
What about birth control and a breast reduction, if needed, come the time?
I would disagree that menstruation would be horrifying to her. The clients who were present enough to know what was happening were fine with their cycles. From what it looks like Ashley would not even know it was happening outside of discomfort that could be easily elevated with medication.
I am not sure of her exact condition, but I rarely saw a non-ambulatory client in that state that ever got to big to handle effectively. Besides, the family says that it was not the care giving that was the consideration . . . but her comfort. (How comfortable is it to have both breast lopped off I wonder?)
Right on for brining up the feminist implications of this issue!
There was a male at my place of employment that would masturbate to the point of extreme rawness. Would these doctors recommend castration? I think not.
I’m not sure where your shock is coming from on the breast/reproductive rights issue, Rachel. This girl is profoundly mentally retarded – in essence, she is an infant, and will always be so. If she were ever to become pregnant, it would be because someone raped her. If she has any volition (dubious), she has no means of acting on it. It’s impossible that she could ever consent to sex. The body changes of puberty and the development of physical adulthood would, as Jess notes, be horrific experiences for this little soul.
I do worry about the slippery slope – that someone who has more of an independent life might be forced along this path. But keeping this particular person small and pre-sexual seems like the most humane way to keep her in a place where she can be cared for by family, and to maximize the quality of life she experiences.
To put it another way and perhaps a bit bluntly, if she’d been enabled/allowed to grow up, her parents probably would have to send her to an institution somewhere. Better to have mom and dad taking care of her.
I pretty much agree with Robert, both with the slight “slippery slope” reservations and the general understanding of the motives.
Additionally, people with similar conditions who are allowed to grow to full size go through a large range of non-sexually related health problems, including bedsores, pneumonia, and bladder problems, all of which are risky and, possibly more important, cause pain. This is a person who barely understands the discomfort that comes with hunger; it’s hard to imagine what the pain of those complications would be like.
I also think there’s a question as to whether a person this profoundly disabled, one whose ability to understand the world will always be an infant level, can be reliably spoken for by anyone, disabled or not. The family, especially a family which has shown a clear desire and ability to care for the person, seems like the best bet.
My point in bringing up the “normal size” issues is that the “Ashley treatment” is about more than puberty, and the concerns of the parents are about more – much more – than the worry about sexualization.
This case has profoundly horrified me since I first heard about it, but until now I couldn’t quite come up with why.
Saying that “given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body” is really saying that a developmentally disabled adult is so horrifying (inappropriate, undignified) that they should not be allowed to exist–and if they must exist, at least let’s make them stay little so they’ll keep on being perceived as cute and we can pretend they’re still children.
Ashley’s parents talk about dignity, but certain others clearly feel this “treatment” is only justified because that concept has no relevance to a severely developmentally disabled person. From the BBC article:
So Mr. Dvorsky thinks that fully grown developmentally disabled people are grotesque. Wonderful. Somehow, statements like that make me doubt that practical concerns were what really tipped the scales in favor of allowing this. Sure, the medical issues and the difficulties facing the parents were motivators, but when things just happen to mesh so perfectly with our society’s distaste for disabled people when they’re not cute enough, how can we act as if that isn’t playing into it?
The bottom line is that this “treatment” is medically sanctioned assault.
I’d assume that 9 years experience plus modern brain scans gave the parents certain knowledge of whether or not Ashley was going to change- if she can’t even recognize faces, then she’s been staying not far from the neonate for 9 year.
To me it seems like the parents had a choice- have an infant with the body of a 9 year old, or have an infant with the body of an adult.
In reading the reactions about Ashley it seems like their isn’t a good language to describe her. Permanent infancy seems entirely different from other descriptions or definitions of disability. i.e. She isn’t like a kitten prevented from becoming an adult cat. She isn’t a child prevented from becoming an adult. She’s an infant who doesn’t look like an infant.
Here’s a thought experiment:
Imagine that another child has a similar mind- unchanged from that of an infant- but their body also has barely changed. Perhaps at age 14 this child’s body looks like that of a 4 year old.
Imagine now that a doctor comes to the parents and says “While we cannot change the child’s cognition, we can give a treatment which will quickly grow the body into puberty- within months their body will be just like any other 14 year olds, within a few years stopping at full adult size.”
Would you give this infant the body of an adult, because by the calendar the child ought to be going through puberty?
As a parent of a severely disabled child, I’m having a rough time with this one. My son is disabled as the result of a brain tumor; the treatment interfered with his endocrine system (as cancer treatment tends to do) so that to reach anything close to his projected height of 6 foot 1 he would have needed growth hormone supplements. The primary reason for our decision not to give them to him was that it would be very hard for us to care for him at home if he got that big. His endocrinologist supported that decision. As it is he weighs close to 90 pounds at what we think is close to his full growth, and I can just barely lift him.
Whether not giving hormone supplements is morally the same as surgical intervention I don’t know, and I am rather squicked out at the thought of the surgery that was done on Ashley, but I think it’s at least more complicated than that this child’s rights were violated because she’s disabled. It’s not a matter of “keeping her cute” but of making very hard choices about how best to care for her.
The truth is that our son, with the cognitive ability of a two-year-old, doesn’t care how tall he is; he won’t ever need to impress the girls or play basketball, and he will need to be cared for all his life. If Ashley really has the cognitive ability of an infant, she won’t care if she has breasts or periods. I can’t imagine that any doctor would have done the surgery without carefully and painfully weighing the costs and benefits.
That last paragraph makes it sound like I think Ashley’s parents did the right thing, and I don’t, really; as I said, I don’t know, and my initial reaction was “how could they mutilate her that way?” It’s just that when I think more about it I get to “it’s not that simple” pretty fast.
Man. I’m also torn. I have very close friends with a young son – nine now, I think? Maybe only eight – with an extremely severe case of Down Syndrome. Extremely, extremely severe. He’s a very happy, very loving boy, but he’s not toilet trained, and he probably never will be. The fact that he’s able to walk is amazing – when he was five, the doctors were very skeptical that he’d ever be able to, but he can, though not for very long and not particularly well. There are times, over the past few years especially, where he’s started hittiing and scratching people, and pulling hair, because he just doesn’t know any better. Having watched him grow from an infant to the size he is now, I’ve very often been struck by the fact that, as he gets bigger, it’s going to besome exponentially harder for his parents and two older brothers to take care of him. It’s hard enough restraining an eight-year-old when he pulls your hair – imagine a sixteen-year-old, or a twenty-one-year-old, or a thirty-five-year-old. What’s puberty going to be like for him? I can’t even imagine. Might he someday be able to rape someone, or otherwise sexually assault someone, because he doesn’t know any better and is stronger than his caregiver? What would be the right way to prevent that? Preventing him from reaching sexual maturity would certainly be one way, but is it the right way?
My overall feeling is that, no, what Ashley’s parents did to her wasn’t right, but at the same time, I can completely understand where they’re coming from. I just don’t know what the better answer is. I wish I did. I really, really wish I did.
Here is a thread on Free Republic (a conservative site) with 217 comments on this very thing. Note that people didn’t catch on that this included a hysterectomy and a dual mastectomy for a while; the original poster simply cut/pasted the article up to the limit imposed by copyright laws, and the part of the article that noted those details occurred deeper into the article than that. Someone finally figured it out when they went back and read the original citation.
I don’t think that this as as black and white as you make it out to be, Rachel. You say in your commentary:
Well, I tend to think that this is one of the central issues for me. Right now, the kind of vociferous criticism of this process I’ve heard ends up sounding (to me) an awful lot like “this creeps US out, so WE want YOUR daughter, who YOU have to lift and care for daily, to be a foot taller and 100 pounds heavier. We have no help to offer, just a lot of outrage. Good luck!”
Now, yes, it does creep me out . . . but lots of things creep me out. Okra creeps me out. I’ve learned that ‘what creeps me out” may not be the best guide to morality.
—Myca
This is the part that truly disturbs me. I am hesitant to judge Ashley’s parents’ decision knowing only what the media tells me and therefore am only at a place where I too am viscerally unnerved by the entire procedure, but like Lu, believe it cannot be that simple. I believe that concerns regarding Ashley’s size, the pain and discomfort that may be caused by her puberty and growth, these are extremely difficult ethical dilemmas, but at least somewhat understandable to me.
The above quote, however, implying that Ashley’s potential rape or molestation would be prevented by the removal of her breasts, absolutely floors me. Once again, it appears that if only women, and their breasts, weren’t just so damned sexy, rape wouldn’t exist. Once again, women’s bodies and their overwhelming sexual nature are the instigators of rape, not rapists. How many times do people have to say that rape and abuse is not about sex before people hear it? How much blaming of the victim do we have to do, to the point when a severely disabled girl’s own body is the fault of molestation or abuse, not her abuser? Do people really think that potential abuse in this situation will honestly be prevented by this surgery? Now it’s not just miniskirts and being out at night, but the very presence of breasts that “invite abuse”???
I agree with Myca… just because something creeps us out or offends us is (a) not a good guide to morality and (b) definately not a good guide to legality. Birth control and suffrage piss a lot of people off but I’m glad they’re still legal. Not that this is a good comparison.
I think that it is a rock and a hard place. They’re going to have to care for or pay someone to assist in/care for their daughter until and after their own deaths…. this could be another 60+ YEARS. If in 9 years she is so mentally undeveloped that she can’t recognize faces (ie- newborn state), how much is that ever going to change?
On the other hand, she’s a human being, and deserving of… what, exactly? What part of normative physical development (puberty, height, etc.) is core to our humanity?
I think the only thing that is easy to say is that it’s not that easy.
Much as I hate to say it, I generally agree with Robert on this one. Ashley is–baring changes in medical technology so unexpected that the word “miracle” would not be out of place in describing them–never going to achieve the mental state of a 2 year old muchless an adolescent or an adult. Preventing her from going through puberty will prevent her from experiencing menstral cramps and bleeding–which would simply be sudden pain for no reason to an infant. It might also decrease her risk of being sexually assaulted if it allows her to stay home and be cared for by her parents rather than by strangers. (Though I agree that the claim that not having breasts will keep her from being sexualized to her caregivers is dubious at best.) And if she is assaulted, the surgery will at least keep her from becoming pregnant, which would be horrifying at best, life threatening at worst. Yeah, I know, non ideal to put it mildly, but the fact of the matter is that severely disabled people who can’t defend themselves are vunerable and not all caregivers are ethical or even decent.
I’m actually somewhat less worried than most people about the “slippery slope” issue. The fact of the matter is, we’re already on that slope and I don’t think that this case makes us slip much further. Ashley’s parents could have, legally and without controversy, decided to withhold all medical treatment except for comfort care from her, place a feeding tube, put her in an institution and never see her again, and consent to or withhold consent for most surgeries. How is this case any different?
This stunting will make it easier for her parents to continue to give her home care, and the truth is, may also help improve care once she is institutionalized (parents don’t live forever). As for the “defeminization/sterilization” part, it is unfortunately true that all sorts of institutionalized people get raped, but I daresay an immobile nonverbal fully developed young woman is at more risk than most institutionalized people. Shouldn’t be, but that’s life as it is. I don’t expect the life of the institutionalized severely developmentally disabled to get any better in the future, especially with the competing care needs of aware verbal elders of the baby boom and the declining birth rate in this country and increasing hostility toward immigrants.
Slippery slope, I know.But I don’t care to criticize the parents of a forever helpless, forever mentally neonatal child. We simply don’t have standing to do so, since we as a society don’t do a good job of caring for these people and their parents.
I agree with everything else you and Myca said, Wookie, but this worries me a bit: I thought “slippery slope” before I read Dianne’s comment. Can you take this a little further? I don’t want to go off on you yet as I think I may be conflating you with another commenter quite a while ago who had some extremely disturbing ideas about disabled children.
It comes down to, “do they intervine or not?” If not the child dies from starvation or lack of water. If they intervine “at all” then they have the right to intervine at any level. All these people who are sickened by this intervention should go down to a hospice and work there for a while or shut up.
I dont have a problem with it. She’s mentally 3 months old. She’ll be mentally 3 months old until the day she dies. WHAT does a 3 month old need with breasts or a menstrual cycle? She has to be strapped into anything not a bed. Straps across boobs, yeah not comfortable even to people with the ability to reason out that its for the best, much less a 3 month old infant who doesnt have that ability.
I think it’s hard to talk about human *rights* in this scenario because this isn’t the type of thing that’s usually covered in discussions of human rights. (http://www.un.org/Overview/rights.html)
We believe that we have the right to free speech, the right to worship what we want, life, liberty and security, to consent or refuse to a marriage, education, to own property, to travel, to not be tortured or subjected to degrading punishment.
She’s a human and she has rights. But what does that specifically, legally entail? What does it cover and what does it not cover? Does she have the right to go through puberty and grow another foot, gain another 50+lbs? It would certainly be the physiological normative thing for her body to do, that growth is what makes us look like our peers. But this is a very unsual case, and I can’t see how achieving full growth would positively impact her mentally or physically. And there’s no good way to assess negative impact either from the point of view of the patient… abuse, rape, quality of care, all of these are things we’re *predicting*.
So how much of ones body, size, sexual characteristics etc. are human *rights* as opposed to simply normative or not normative? If you can’t use it, how traumatic is it to not ever attain it? It’s not uncommon for people who are institutionalized to have been sterilized. It used to be standard operating procedure. It no longer is in Canada (iirc) and what we’re talking about is quite a bit more invasive.
While I think the steps they’ve taken are abnormal and certainly shocking if not horrifying, how does it affect the quality of life of the individual? Her quality of care may indeed go down if her body physically matures to what we would consider a normal adult… but it doesn’t *feel* right to do that to another human being, stopping the growth process.
I think that’s what makes this ethically confusing, because from a completely objective standpoint it may well be a *good* thing, but for most of us it’s horrifying. And of course there’s no consent or even what we would consider awareness on the part of the patient.
I applaud her parents for obviously caring for her and loving her – and planning to do so for the entirerity of their lives together.
I couldn’t do it.
Yes, you could, Q Grrl, but you wouldn’t want to.
Thanks, Wookie — you’re right, it is ethically confusing. There was a discussion here quite a while ago in which a commenter suggested that severely disabled children who are a drain on society’s resources should be euthanized by the state, and that their parents might feel relieved after they got over the shock. He specifically included my son in his recommendation, and I found this exceptionally horrifying (and the notion that parents caring for disabled children don’t know that they’re carrying an extra burden remarkably insulting). Through no fault of yours — let me say that again, louder — through no fault of yours — your wondering what constitutes humanity brought that incident to my mind. I see, though, that you’re going in an entirely different direction.
(Btw, that commenter was banned shortly afterward.)
Quality-of-life issues are tough. Making decisions for other people is also tough, even when you’re supposed to do it for someone who isn’t competent to make them, as a parent, for example. It’s even harder when the child or patient doesn’t understand what’s going on and doesn’t want it to happen. I’ve held down my son while he screamed any number of times, like while the dentist was cleaning his teeth. No one would say that forcibly cleaning a child’s teeth is wrong, and it seems to me that the surgery performed on Ashley is on the same continuum.
I surprised that people here are willing to accept the arguement that Ashley is less likely to be raped if her breasts are removed. She may (or may not be) less likely to be raped at home than in an instiution but having breasts has nothing to do with it.
I think keeping your kid out of an institution is an admirable goal, but I’m not sure all this surgery is necessary to do it. I’m certain that removing her breasts is unecessary and suggests that htere is more to this “treatment” than whats best for the patient.
Question for women, especially feminists on this thread:
If you were severly disabled tomorrow would you want your breasts and uterus removed? If you were to imagine yourself in the actual position of this girl, how would you want to be cared for? It could happen to you tomorrow.
Interestingly, I also see the Ashley Treatment as a feminist issue, but as a different one. To me, this is about respecting choice. Undoubtedly, her parents have a legal right to make medical decisions for Ashley. Would people be getting all upset about this if she weren’t losing her “femininity”? Heaven forbid, the hysterectomy wasn’t performed, and this ten-year-old does get assaulted by a rapist. Don’t you think a lot of people would be just as appalled if her parents had an abortion performed on her? Or if they refused to have an abortion performed on her?
The problem with the anti-choice position, it seems to me, is that too often it comes down to denying everyone choice because some people in hard situations, are going to make choices I don’t like [the ubiquitous and stupid, “what about the woman who decides to have an abortion when the fetus is healthy at 39 weeks?”].
I respect Ashley’s parents for making the best choices they can, even if their justifications are unappealing to me.
If I knew I was going to be reduced to the level of a 3-month-old mentally for the rest of my life, I would kill myself so as not to burden my family with my care.
I think that is a completely completely completely different case though. I’d be making an informed decision. A child like Ashley will never be able to make an informed decision. She can’t say what she wants her life to be like. It’s the most reasonable thing to assume she wants to be happy like any infant wants to be happy: kept warm, well-fed, free of pain, close to people who look and smell familiar, intellectually stimulated with moving images and lights and music.
No offense meant here, but after living with myself for 40 years, I’m well aware of my shortcomings. I don’t think I’m wrong in saying, about myself, that I lack the human compassion to give life-long care and love in this scenario. At some point I would either hate the child or hate myself.
“Question for women, especially feminists on this thread:
If you were severly disabled tomorrow would you want your breasts and uterus removed? ”
I don’t feel like I can answer this question without some definition of “severely disabled.”
“If you were to imagine yourself in the actual position of this girl, how would you want to be cared for? It could happen to you tomorrow. ”
Answering only about the disability of this girl as it’s been described — I would want to be euthanized.
Ditto.
Would people be getting all upset about this if she weren’t losing her “femininity”?
Well, yes. I would be upset about this if they were, say, removing her legs. I think that a lot of the lack of upset has to do with the fact that she is “losing her ‘femininity.'”
Here’s where this is going to get interesting. What about when parents start using hormonal therapy on developmentally normal children to delay or extend pubescence? My oldest daughter is 9 and is beginning to develop physically – and she is NOT mentally or emotionally ready for it. What happens when I could give her a pill to put things off for a year or two? (I wouldn’t, but plenty of other people would.)
I think that is a completely completely completely different case though. I’d be making an informed decision. A child like Ashley will never be able to make an informed decision. She can’t say what she wants her life to be like. It’s the most reasonable thing to assume she wants to be happy like any infant wants to be happy: kept warm, well-fed, free of pain, close to people who look and smell familiar, intellectually stimulated with moving images and lights and music.
But she is not an infant. She is a nine-year-old girl with a developmental disability. Twenty years from now, she’ll be a twenty-nine-year-old woman with a developmental disability, post-hysterectomy, on exogenous hormones. She will look childlike, because of a whole lot of medical intervention, but she won’t be a baby or a little girl. A lot of the motivation behind this seems to be about resolving the incongruity: it’s “grotesque” for a person to have an adult woman’s body and a mind we see as properly belonging to an infant.
“But she is not an infant. She is a nine-year-old girl with a developmental disability. ”
I think strictly defining her identity is very difficult. From what I’ve read from other sources, her brain is completely frozen at the age of 3 months. “a nine-year old girl with a developmental disability” sounds too general and way too optimistic. She doesn’t have Down Syndrome or anything mild enough to enable actual intellectual growth and identity development. Should decisions be made in her best interests respecting her as she might theoretically be, or as she really is… and will always be until she dies?
Regardless of what age her body is, her mind is an infant’s, and she needs to be cared for like an infant. It’s grotesque to require her parents to let her body reach an adult size and shape so that they can no longer provide that care.
Sorry, Q Grrl, I didn’t mean to offend you. Speaking only for myself, I would have said I couldn’t do it, but I can (with help, and for now anyway — at some point I think my son will have to go into some kind of residential program as we age and are less able to care for him at home). It is not easy. I don’t hate my child or myself, but I sure wish things were different.
this is just so upsetting on so many levels
Regardless of what age her body is, her mind is an infant’s, and she needs to be cared for like an infant. It’s grotesque to require her parents to let her body reach an adult size and shape so that they can no longer provide that care.
There are adults in her condition and in similar conditions, and they receive care. It is not impossible to care for a developmentally disabled adult. Would you have a problem with a disabled person who had already reached physical adulthood receiving a hysterectomy so that her caretakers would no longer have to deal with her period? Moreover, her parents also seem very invested in their relationship with their little baby angel girl; it’s not only about logistics. It’s about preservation.
Should decisions be made in her best interests respecting her as she might theoretically be, or as she really is… and will always be until she dies?
I’m not softpedaling her condition at allWhat “really” are we talking about here? I’m talking about her body, which is not theoretical.
I guess the question I would ask of those who feel that this was the wrong option would be . . . what’s the right one?
Because for Ashley to grow to adulthood with the mind of a three-month old child in the body of an adult, most likely cared for by strangers, experiencing her body’s changes as painful and traumatic, increasingly likely to injure herself or her caretakers . . . doesn’t sound like a good solution to me.
I am very hesitant to offer harsh criticism in a situation where I see no good answers.
“Question for women, especially feminists on this thread:
If you were severly disabled tomorrow would you want your breasts and uterus removed? If you were to imagine yourself in the actual position of this girl, how would you want to be cared for? It could happen to you tomorrow. ”
Vs. being in pain and not understanding why? Absolutely yes. I’d also want to alleviate as much burden as possible on those caring for me.
If I were in her position, 1) I wouldnt need my breasts nor my uterus 2) how can you miss something you no longer self identify with ? You wouldn’t consider it a loss. You wouldn’t consider it at all.
Here is an excerpt from what Steve had to say on Planet of the Blind. :
I am blind. My wife has fabulous eyesight. Perhaps it would be more convenient for me if Connie was blinded by a medical procedure so she could know the daily frustrations I experience around our house. Perhaps if she had to walk in the rain to get the public bus that always seems to come late, well that would be good for our relationship. And Connie would then likely have a guide dog as I do, and we’d go everywhere together.
I’m not softpedaling her condition at allWhat “really” are we talking about here? I’m talking about her body, which is not theoretical.
If I had a choice to be treated as my mind, or treated as my body (in other words, what constitutes the “real” me, body or mind?) I would pick my mind. I don’t think such a stark either/or choice comes happens a lot, but I see it in this case.
If I had a choice to be treated as my mind, or treated as my body (in other words, what constitutes the “real” me, body or mind?) I would pick my mind. I don’t think such a stark either/or choice comes happens a lot, but I see it in this case.
But being treated as someone with her mind doesn’t necessitate changes to her body such that it seems more congruent with her mind.
Parents of transgender children sometimes medically delay the onset of puberty for their kids, so that the kids have time to figure things out. This is not the same issue at all, but somebody asked above if “normal” kids ever have puberty delayed. The answer is yes.
Given the real lack of support structure in the US, I cannot condemn the parents. They’re really on their own.
If we had a system in place and the parents had more options, I might argue against this action, but their options are so few. This isn’t “convenience.” There’s nothing “convient” about caring for a severely disabled family member.
Piny, have you ever cared for a severely disabled person? Unless you have, I don’t think you have any right to judge the choices these parents have made. (And even then.) They are just trying to do the best they can for her. And thinking of her as their little angel may be the only way they can get through the day.
If I could make my son a normal 12-year-old (I realize I am not supposed to use the word “normal,” but I’ll damned well be politically incorrect for a moment here), and chose to do so, which believe me I would, would you say I was just doing it for my own convenience and trying to make his mind congruent with his body?
Piny, have you ever cared for a severely disabled person? Unless you have, I don’t think you have any right to judge the choices these parents have made. (And even then.) They are just trying to do the best they can for her. And thinking of her as their little angel may be the only way they can get through the day.
I don’t support their right to order surgery for their little girl so that she can remain their little girl. The grief puberty would cause them, the cognitive dissonance an adult female body would cause them, are not sufficient reason to give Ashley a hysterectomy and administer hormones that keep her childlike forever. I’m sure they are doing what they think is best, but I’m not under an obligation to take that at face value. Especially since their desperation is very much informed by social neglect of her needs.
I agree 100%, Piny. I don’t believe that their reactions are sufficient reason for these things, but I think that Ashley’s reactions and the quality of her life are.
I believe that Ashley’s life “post-hysterectomy and with hormones” is likely to be a better, more comfortable life than her life would be likely to be otherwise.
Once again, you try lifting a 90-pound (or heavier) person every day and you might understand that it has very little to do with cognitive dissonance. Ashley’s parents had the surgery done so that it would remain possible for them to care for her, and once again, I can’t imagine that any doctor would do it otherwise.
If you were king, how would you meet Ashley’s needs and the needs of severely disabled people in general, preferably without crippling the national economy?
Once again, you try lifting a 90-pound (or heavier) person every day and you might understand that it has very little to do with cognitive dissonance. Ashley’s parents had the surgery done so that it would remain possible for them to care for her, and once again, I can’t imagine that any doctor would do it otherwise.
If you were king, how would you meet Ashley’s needs and the needs of severely disabled people in general, preferably without crippling the national economy?
Please. Don’t tell me that it’s ableist to object to the idea that there’s simply nothing to be done besides artificially restricting Ashley’s growth via surgery so that she isn’t hard to lift or otherwise care for. It wouldn’t cripple the national economy to provide her parents with respite care or with other forms of assistance.
More to the point . . . as much as I’d love to be King, and as much as I’d vote for Piny for King in a quick minute, what could the parents have realistically done?
Assume that if Ashley grew to full size, her parents would no longer be able to lift or care for her.
What should they have done?
What should they have done?
Do you believe that they are the only parents in this situation, or the only caretakers who have ever had to maneuver someone who weighs more than sixty pounds and cannot move themselves? Do you think that all severely developmentally disabled children receive hysterectomies and doses of estrogen to inhibit growth? This is the atypical course here, not the standard. I am not going to assume that there are no other options. It would be wrong to assume that her parents have no other options, because adults who require this level of physical assistance receive it every day.
Piny,
Again, it seems as if we don’t have the language-space to describe what Ashley is. Did they ever have a “little girl”? When? I’d say they already went through an extraordinary amount of cognitive dissonance when their infant-girl had the body of a 2 year old, then three year old, then 4, 6…
Here’s another thought experiment:
Imagine parents have a child like Ashley, where the brain has stopped developing- is incapable of developing further- at an infant stage. This happened, say, 15 years ago. Simultaneously another child at 3 months had an at-the-time incurable illness.
Both childs’ guardians were offered a “hybernation treatment” where the child would be put into a safe stasis box: time stops for the child inside the machine. (The guardians of the non-Ashley-like child are told that they’ll be told the instant a cure is found.)
Imagine now that a cure is found, and that both children are taken out of hybernation. From now on they’ll grow just as they would have without the machine. The child with the then-incurable-illness has been cured.
A doctor comes to the guardians for both and says “Your children have the bodies of 3-month-olds, but by the calendar they’re 15. I can give you a drug which will quickly give them their bodies as they’d be at 15. This drug only affects the body, not the brain.”
Would you give either the treatment? Does it make a difference that one child’s mind could grow into a 15-year-old body (although then the body will be biologically older), while the Ashley-like child will never grow into it- that is, her mind will never change in response to the changes of her body, will never change because it cannot?
It would be wrong to assume that her parents have no other options, because adults who require this level of physical assistance receive it every day.
Yeah, in institutional care, often paid for by the government. These folks want to take care of their daughter themselves, for as long as they are able to do so. I think Myca’s point is a very good one: what should they have done? Saying “but they have other options” is all well and good. Which specific option are you recommending to them, that meets their desires for their own lives and the quality of life for their daughter?
The other treatments are very atypical, but I think hysterectomies are more common than people know. On another forum someone told me their close friends had a daughter with severe cerebral palsy and the mental age of under 5. The daughter had a hysterectomy, I’m not sure at what age. Now she lives in an assisted living facility and has a nonsexual (probably) “boyfriend” but the parents don’t have to worry about her getting pregnant and having a child that she would never be able to raise.
Rachel @23
If an accident or event caused me to be in the position of this girl (cognitive space of a 3-month-old, no ability to ever change beyond that), then that wouldn’t be me anymore- I wouldn’t exist in that brain, because that would have had to be a severe accident or illness. My family knows my organ donation wishes for a situation like that.
Yeah, in institutional care, often paid for by the government. These folks want to take care of their daughter themselves, for as long as they are able to do so. I think Myca’s point is a very good one: what should they have done? Saying “but they have other options” is all well and good. Which specific option are you recommending to them, that meets their desires for their own lives and the quality of life for their daughter?
Actually, they also receive this level of assistance at home. There’s nothing about nursing care that requires that it occur in an institution. Why would that be less palatable than a hysterectomy?
Just to be clear, were I in this situation, I would either have my child cared for privately, could I afford it (which I cannot), or give her up for an adoption that (to be clear) would never happen.
I could not possibly deal with this.
I cared for my grandmother as she died for two years, and she weighed significantly less than the roughly 110+ pounds that Ashley would likely have weighed at her full growth. I am a strong, healthy, adult male, and lifting my grandmother in such a way as to hurt neither her nor me was very difficult.
Because it’s far less affordable. Because 24-hour-a-day in-home nursing care for the next 40+ years would bankrupt even the wealthiest among us.
In a perfect world, yes, this wouldn’t be the situation . . . and I would love to live in that world . . . but in this one, I just don’t see a good answer.
Here are three drawbacks of menstruation, puberty, and having a uterus, attempting just from the point of view of the child not the caretakers:
1. painful menstrual cramps, combined with inability to signal to caretakers that cramps combined with gassiness are coming on
2. hormonal surges combined with inability to masturbate
3. increased risk of cancer
2. hormonal surges combined with inability to masturbate
This one is huge.
There’s simply no way for this girl to have an ethical sexual life, by just about anyone’s moral standards. (My own church, with my agreement, would say that a lifetime of celibacy would be the right course of action.) She can’t consent to anything – she is coerced in every action that is taken concerning her life, other than maybe spitting out food. (I don’t know that she even functions to that level.) Sexual contact with others must come from informed and willful assent to be ethical – so that’s right out. Sexual contact with herself (i.e. masturbation) would be an acceptable outlet under many moral codes, but she doesn’t have the ability to do that. And the lifetime of celibacy that my church believes in has great spiritual value only if it is chosen – just being left to ache hornily for 60 years is not intrinsically good, and seems a terribly inhumane thing to condemn someone to who has no recourse or ability to change her situation.
Is it safe to conclude that the extensive surgeries for which she’s slated are all totally painless? I’ve never had a hysterectomy or breast reduction myself, but that’s not the impression that I have.
It seems to me that, assuming that she’s incapable of communicating pain, it would be a lot less invasive just to give her ibuprofin for the week before her period, to be on the safe side.
Honestly, I can see the hysterectomy thing way more than the mastectomy. That makes no sense to me.
Huh. This seems utterly at odds with your church’s stance on homosexuality.
At any rate, I guess I have real issues with the idea that it’s ok to remove body parts if people can’t use them in the way that we expect people to. I mean, she can’t talk or taste either, so would it be cool to remove her tongue?
First, Blue has updated with clarification
here
Y’all need to read more carefully. The main reason for the removal of sexual parts is that she’s at risk for cancers of those parts. And Piny, she is not dependent on exogenous hormones, because she still has her ovaries. And while it wouldn’t cripple the national economy to provide the assistance her parents are going to need, it just won’t happen. It’s a hard thing to face, but they have faced it; they needed to make their own arrangements and they have made them. Personally, from what I remember, I’d say that the prospect of lifting even a mentally intact person of normal size every day for every need, would be a huge burden to look forward to as they age. And this poor child can not help in the process in any way.
apologies for the abbreviated comment, I had more to say than the link to blue but…just suffice to say… it was long, involved, and opposed the procedure…
but the comment didn’t come through just the link
The parents argue that if she remains small, then as well as some physical benefits (less likely to get pressure sores), she will benefit because it will be much more practical to include her in daily life, moving her from room to room, taking her to family events, etc.. They believe that being around her family makes her happy, in much the same way that infants enjoy being around their families.
Offhand, that doesn’t sound unreasonable to me. And although there are alternatives for moving a person who weighs 50 pounds more than Ashley currently does (slings, wheelchairs), Ashley (according to the parents) hates being in a wheelchair and cries when she’s put in a wheelchair. And if it takes 45 minutes to move someone with slings and 2 or 3 people, that person will be inevitably be included less in daily life – even among very well-meaning families – than someone who can simply be picked up by a single adult.
Also, if Ashley remains at her current size, her parents will probably be able to care for her longer at home, even as they get old themselves. It’s likely that Ashley’s life will be better the longer she’s able to be cared for at home.
So yes, certainly, there are other options that don’t involve stunting Ashley’s growth. But I think there are legitimate questions about if those other options are as good from Ashley’s perspective.
Similarly, I don’t think it’s unreasonable to think that Ashley might be happier never experiencing periods or menstruating. I’m sure the operation has some short-term pain, but in the long run it may be less painful, especially if the women in Ashley’s family typically have pain that’s too severe for ibuprofen to fix.
Maybe her parents are wrong on all counts. But under the circumstances, I don’t see who could be better positioned to judge what makes Ashley happy and comfortable than her parents. It’s clear, I think, that they love her and are trying to serve her best interests. Maybe they’re mistaken about where Ashley’s best interests lie – but who is better positioned to make that decision, than Ashley’s parents?
And I think the level of disdain for the parents I’ve read around the internet is unjustifiable. I really hope people won’t be attacking the parents here. Even if they’ve made the wrong decision, they don’t deserve contempt.
(It’s also clear that Ashley’s parents have absorbed some rape myths over the years. This makes them pretty much the same as most Americans. They’re probably right to think that Ashley’s best chance of not being raped is for her to be cared for by them at home, rather than institutionalized – I’ve never seen any report or study on rape among institutionalized patients that didn’t suggest that rape prevalence in those places is anything less than horrifying.)
Maybe it would be better if a child welfare expert had been part of this case, to act as Ashley’s advocate. But I don’t think it’s clear-cut that the decisions reached if Ashley had an independent advocate would have been different.
Actually i take it back. The whole thing strikes me as gross. Blues point that 9 years of three-month old like experiences does not equal the state of being three months old is quite good, and this post cinched it:
http://fitofpique.blogspot.com/
Although I’m sure she’d disagree with many of the views I just posted in this thread, I wanted to recommend that folks click through and read this post by Wheelchair Dancer regarding Ashley.
I don’t know if Chicago is any different, but in Massachusetts people only qualify for nursing care if their disability or injury is deemed temporary. Chronic progressive and permanent disability does not “merit” ongoing, in-home nursing care (unless, of course, you’re rich enough to pay for private care yourself).
People are forced into institutions when parents and/or spouses can’t do it, any longer. I know too many elderly parents –including my own–who had to institutionalize their adult children after years of providing long term, round-the-clock care. Anyone who has attempted to shower an nonambulatory adult knows just how difficult it can be, just how heavy even a relatively light adult can get. Now imagine what its like for a 65 year old or a 75 year old person, etc. Imagine the impossible choice they face when their own health starts to fail.
Most healthy people ignore these issues up until a case like this puts it in the public eye; and even now people are judging the parents and not the nearly impossible situation our society has put them in.
If people hate it has come to this, (and I do as well) fight to require home heath care assistance for all the people who need it. Disability activists have been lobbying for this, but they don’t have the money or power to change things themselves.
To follow up on my long comment, I do think that Ashley’s parents decision-making has to be seen in the context of a society which provides very little support for caretakers, and which doesn’t do much at all to accommodate families like theirs.
Maybe they would make a different decision if society provided them with a better menu of options. But the main thing to criticize, in that case, is society – not Ashley’s family.
The most interesting part about the Ashley X case is the way it makes us consider how rights change with mental ability.
If Ashley had her complete mental faculties, obviously this operation wouldn’t be permitted without her consent, even if her parents and doctors wanted it to happen.
How, exactly, do rights vary with mental capacity? At what point do we let people make their own decisions, and how do disability, age, etc. affect what sort of decisions people can make?
These are pretty complex questions, and most of our current answers don’t seem to be working, but cases like this can help us get closer to a solution.
Oh man, you guys are totally ew.
I’ve read it pretty carefully.
First of all, Ashley’s parents make it clear on their webpage that they’re not just talking about their personal choices for their daughter. They’re advocating “the Ashley treatment,” something which they think could benefit other “pillow angels.” I doubt that most severely disabled children have a family history which suggests that prophylactic hysterectomy would be medically indicated.
But also, they do, in fact, discuss issues other than Ashley’s medical prognosis and comfort. For instance (and this is bolded in the original):
and
I don’t think you can just ignore that stuff, convenient as it may be. Why exactly would Ashley’s adult body be “undignified”? Can someone unpack that one for me?
Look, I don’t want to bash Ashley’s parents, who I’m sure are doing the best that they can for her. But they’re advocating a solution, not just for themselves but for other people in their position, that doesn’t address the root cause of the problem. I think it’s perfectly valid, given the context of their webpage, to argue that their solution, which totally privatizes the problems of caring for seriously disabled children, isn’t the best one.
You’re right. Good point.
cyberpunks point is pretty well taken. Almost all of the same reasons that are given to Ashleys case would also apply to someone who was severly physically disabled but wiht normal brain function. Hopefully performing such purely preventative “medical” treatments in that situation would not be up for such gruesome debate
If you were severly disabled tomorrow would you want your breasts and uterus removed?
If I became severely disabled tomorrow, removal of my uterus and ovaries would be one of the few things I would definitively want done. On most issues, I’m pretty indifferent to the question of what should be done with my body if I’m essentially gone. But the idea of someone using my body to make a baby without my consent appalls me. My breasts, eh, I could care less. If it makes it easier for the caretaker, fine, whatever. (Actually, I don’t think that the mastectomy is terribly necessary in Ashley’s case. Even supposing she would normally develop largish breasts, the removal of her ovaries should stop that without having to remove the breast tissue itself. )
Of course, what I would want and what Ashley or any other severely disabled person would want are not the same thing. Assuming that I would want it therefore she must want it (0r alternately, I would find it horrifying therefore it must horrify her) is not a safe assumption to make.
What if the issue started with Ashley as a person. Ashley, like other disabled people, has human rights — they have recently been affirmed by the UN in the Convention for Human Rights for PWD. These rights assure the dignity and integrity of her person and her body. They obtain over such questions as how easy it is or isn’t to care for her. I find it hard to see how shaping her body to suit the logistics of her caregiving situation, a situation that might change is in line with the principle that Ashley, no matter how significantly disabled, is a person, whole in her own right.
Having worked with MRDD clients in a group home setting, I agree that these surgical proceedures will make it easier on the parents. Bu, while I have worked with MRDD clients in group homes and have taken care of elderly relatives in my home without non-family assistance, my thought process doesn’t focus on Ashley’s particular case or on the state of home care and the need for help.
My thoughts take me to this question: Where do we draw the line?
Suggestions (a la Jonathan Swift’s “A Modest Proposal”) to make particularly difficult parenting situations “easier”:
Abort babies who have genetic markers for MRDD or other difficult “illnesses”.
Put disabled babies “to sleep”.
Tape mouth shut of children who can’t be quiet at the movies.
Prescribe valium for overly active children.
Have vocal chords cut of children who constantly back talk.
Give “overweight” 12-year-olds gastric bypass surgery and/or liposuction.
Burn books of overly precoscious children who are smarter than you. Also burn library cards.
Give children to someone with the patience, money, and interest in raising them just the way they are.
Almost all of the same reasons that are given to Ashleys case would also apply to someone who was severly physically disabled but wiht normal brain function.
Someone with normal brain function could be asked whether they do or do not consent to any or all of the suggested treatments. If they do not then that part of (or all of) the treatment doesn’t happen.
Yes, but I dont think they are routinely or would be suggested at all in that case.
Geeze I don’t know where to begin because some of these arguments seem nonsensical to me.
First, if people are so damn worried about pregnancy thenwe could give this young woman the same type of birth control that we give others. I don’t know too many women who don’t want to have kids, who have their uterus removed as a form of birth control.
The problem with many of the arguments here is that they seem to ignore reality. Many adults are already living with these types of disabilities, and people do provide care for them. Perhaps we could look at other models of care rather than just going along with a radical alteration of this child’s body. Rather than treating Ashley as the problem, maybe we should treat society as the problem.
People also seem to be very conveniently forgetting the gender dymanics of this–seriously, would such a radical surgery be considered for a male? Would we see testical removal and hormone injections to prevent growth (seems to me the average male would grow bigger than Ashley)? We we remove his penis out of fear that it would sexualize him?
Personally, that big breast comment on the parents blog also pissed me off. I have big breast–maybe I should remove them after having children in case I end up in a nursing home someday and somebody wants to rape me. Moreover, I should probably get these uncomfortable bags removed from my chest. C’mon people that’s crazy. I’m wiling to debate the some of the other issues even though I don’t agree with them, but that breast one is way out of left field.
Rachel, you’re persisting in treating this case, rhetorically as well as logically, as though we were talking about a ten-year old girl with an IQ of 50, severe developmental delay, and physical problems. We aren’t.
Rather than treating Ashley as the problem, maybe we should treat society as the problem.
This is the academic paradigm. Let’s discuss the big picture! That’s great. I’m sure that Ashley’s parents will get right on that. They’ll change the world on Tuesday while Ashley’s at physical therapy, and then on Wednesday everything will be fine.
People have to face the problems in their lives as they come. Few of us have the luxury of drawing huge systemic lessons and addressing life problems by altering the universe. Ashley’s parents don’t have the luxury of being a third-party critic with no responsibilities in the case: they have to address the actual problem, which is their child’s physical and mental condition.
As for the gender dynamics, that seems pretty much like pure projection. If it was Ash instead of Ashley, it wouldn’t make any difference to me if they used hormones to keep him at a manageable size – in fact it would make even more sense, since as you note a boy is going to get bigger on average. In fact, since Ashley’s parents are advocates for using this approach on children (not “girls”) in similar situations, it seems obvious that there isn’t a specifically female gender dynamic here. There’s a specific female patient, and her needs are being thought about by her parents and caregivers in the context of her actual physical sex – not constructions about her social role. She doesn’t have a social role.
Comparing yourself to Ashley is simply obtuse. If you were lacking in higher cerebral functions the way she is, you wouldn’t care whether you had tits or not. You wouldn’t know what a tit was.
Piny, not to tee off on you, but you’ve given a good example of what’s been bothering me about this.
Sure, it’s possible to get attendant care at home. This kid doesn’t and won’t need nursing care unless she has a health problem that develops in the future–she needs to be moved by a healthy, strong adult. What she will need, and would have needed regardless of her adult stature, is attendant care.
Currently that care is being provided by her parents and grandparents. Had she gone through puberty, their ability to provide that care would have been seriously impacted. Further, an adult-sized person with Ashley’s level of disability –can’t help to shift her own weight–has to be moved by someone bigger than she is. That someone, even if s/he is large and strong, will either leave the job quickly or develop her own chronic pain or stress injury over time, and then leave the job. (Caregivers, regardless of who pays for them, are also human and their [our] presence, whether adequately compensated or not, shouldn’t be taken for granted.)
Additionally, adult size and weight create bedsores in people who can’t move of their own volition. Bedsores are awful, smelly, painful and require medical attention; they can cause fatal infections. In Ashley’s case the likelihood of her suffering bedsores has been reduced substantially by the limits on her size.
Why is she required to suffer the misery of bedsores, as well as to assume the problems associated with needing home care from a large, strong person for the rest of her life, in the name of being treated as fully human? Why can’t she be fully human and fully deserving of medical intervention that will improve her quality of life?
I’m not arguing that no parent would ever seek this type of care for reasons other than those of their child’s comfort, which I’ve emphasized here. However, given that these reasons are also valid, and support the surgeries, why should the parents be stopped from helping their child live more fully and comfortably?
Despite the fact that they are also significantly convenienced by reinforcing their own sexism, rape myths and wish to maintain their baby as a baby–all of which are significantly less-than-valid considerations–they can’t ethically be prohibited from carrying out these interventions.
Shorter version: Having lousy reasons to make your kid’s life easier doesn’t make it wrong to make your kid’s life easier.
First, if people are so damn worried about pregnancy thenwe could give this young woman the same type of birth control that we give others.
Without her consent?
Without her consent?
As an alternative to a hysterectomy?
Shorter version: Having lousy reasons to make your kid’s life easier doesn’t make it wrong to make your kid’s life easier.
Let me get a little more succinct then, so you can understand me better: I did not argue that her parents are bad people, or that they do not love their daughter, or that they do not want what’s best for her. I’m saying that it is wrong to act as though their lack of options is inevitable, or to pretend–as they do–that “the Ashley treatment” is something that we as a society should invest in as a better option than caring for messy adult bodies.
People have to face the problems in their lives as they come. Few of us have the luxury of drawing huge systemic lessons and addressing life problems by altering the universe. Ashley’s parents don’t have the luxury of being a third-party critic with no responsibilities in the case: they have to address the actual problem, which is their child’s physical and mental condition.
Yes, but we do. We are third-party critics, and we may look at this as a systemic problem. Nor would greater availability of things like respite care require altering the laws of physics. If her quality of life is so endangered that she cannot grow to physical adulthood for fear of losing care, then that’s a problem; her parents should not be presented with those two options and we should not see their lesser-evil choice as a good idea.
Rachel S., to answer your question: If I were in Ashley’s situation, I would 100% want to have my uterus, ovaries, and pre-developed breast tissue removed.
I think this is the best thing Ashley could have had happen to her. There is no good reason for anyone to have to bleed through their genitals and be in pain every month, especially someone who can’t understand why it is happening. I would agree with the treatment even if it _didn’t_ make caretaking easier for the parents.
My sense of a lot of the objections to the treatment is that femininity is somehow essential to the person, and it’s a grievous harm to it take away from them. To focus on the *actual* person, and not some ideal of what a 15-year-old ought to look like, we need to consider what they would want, or at least what they want to avoid. Ashley probably wants to avoid unnecessary pain.
Or, perhaps it’s a question of what people *deserve*. Does Ashley deserve to go through a typical female puberty? Only if you think that it’s an analloyed good. I went through a (fairly) typical female puberty, and still wish that I had the option not to have done so.
Come to think of it, our culture (and not just our medical culture) is very normalizing when it comes to gendering bodies. Just look at how easy it is for men with breasts to get surgery to remove them (and have insurance cover it), while women with large breasts that cause them back pain usually _won’t_ have a reduction covered by insurance.
>I’m saying that it is wrong to […] pretend–as they do–that “the Ashley treatment” is something that we as a society should invest in as a better option than caring for messy adult bodies.
That’s the crux of it: Why?
Okay, I guess for a lot of this it comes down to that I’m kind of a practical guy. Just like in the transgendered-rights debates or SSM debates, my patience for theory is limited as compared to my patience for better/worse outcomes.
So my question is:
In what way would Ashley’s quality of life be better without these surgeries and procedures?
Thank you Rachel for being one of the few to point out the blatant sexism in this case. This kind of DRASTIC surgery would not be performed on a male.
This case horrifies me on so many levels that I am practically at a loss for words. One thing hardly anyone is mentioning is the physical effects of removing Ashley’s reproductive organs and pumping her with Estrogen. The menstrual cycle regulates the functions of a woman’s entire body. Women have a biological protection against many ailments and it is greatly diminished when ovulation ceases. There is also a strong link between synthetic hormones and cancer. (If you disagree with me I suggest you do your own research).
All of this just seems very irresponsible to do just because of what MIGHT happen to her in the future. How do we know she will have such large breasts they will cause her pain ? Perhaps the women in her family are obese. Maybe if Ashley maintains a normal weight she will not have this problem. Even if not, perhaps, breast reduction could be in order. Let’s cross that bridge when we get to it. Also, how can they be so sure she will suffer severe menstrual cramps. Personally, I have never had problematic or painful periods. I don’t know why anyone would think this would definitely be the case. In the circumstance she does have any kind of discomfort associated with her period then could not some sort of pain medication be easily administered to her. Seems a whole lot less drastic than a hysterectomy. I see all of these drastic measures as prematurely aging and mutilating Ashley’s body and causing a whole lot more problems than it solves.
Oh and one more thing I am just APPALLED at the idea that de-sexualizing her should be the answer to a potential rape. My goodness I would have hoped we would be beyond such archaic thinking by now.
Again, thank you Rachel !
piny, if we’re arguing that overlooking her lack of (ability to) consent is a problem, then it seems to me like it’s a problem no matter what the “solution” offered.
In other words, what’s the dividing line between “okay to do without consent” (birth control) and “not okay to do without consent” (hysterectomy)? That’s not to say, obviously, that I don’t understand the gulf between those two options; I’m just looking at all those things which might fall into that gulf as illustrative of the kind of relativism we have to allow in a case like this.
However, the parents’ activism of the “Ashley treatment” is problematic, and I hadn’t really considered that.
Thank you Rachel for being one of the few to point out the blatant sexism in this case. This kind of DRASTIC surgery would not be performed on a male.
From the parents’ site:
The sexism appears to be a projection, not something being actually observed.
Auguste;
The issue isn’t consent as much as it is “why are these treatments seen as an option in this case, when they wouldnt be in almost any other?”
1. they gave ashley hormones to stunt her growth. if that treatment were 100% effective at preventing development of adult-sized breasts, there would have been no need for a mastectomy. so it seems like we have to assume that there was some chance that this 9-year-old body might have had some chance of developing adult-sized breasts. i think this is clearly unacceptable to everyone. so once the growth is stunted (whether you agree with it or not), i’m going to assume that the mastectomy was medically indicated. we’re not in a position to second-guess that, i think.
2. i understand that rape is an act of violence, not an act of sex. the idea that merely having breasts would entice a would-be rapist is clearly a case of blaming the victim. it is a sickness of a rapist to think that a person with breasts is a target for a crime. but i think it’s also true that even many rapists would consider crimes against children abhorrent. therefore keeping ashley in the physical form of a child might indeed reduce the likelihood of her becoming a rape victim. so would keeping her at home under the constant watch of parents who show no signs of having ever sexually abused their child.
3. i believe that i am maintaining a feminist position when i claim that the primary sexual organ in humans is the brain. pre-op transsexuals who have male bodies but female brains, for instance, deserve to the right to act and be treated as women, if they wish. humans have evolved a society that treats sexuality partially separately from its reproductive function, and that has, in the past, been good thing for the promotion of women’s rights. i think it’s fair to say that ashley’s brain will never have sexual thoughts. therefore i’m extremely bothered by the characterization of ashley’s hysterectomy and mastectomy as “desexualization”. there is no sexuality in her brain, therefore there is no “sexualization” to “de-“.
4. this is definitely a matter of degree, and there is a slippery-slope problem here. but there is a slippery-slope problem in the gun-control debate as well, and i am still in favor of banning some weapons (shoulder-launched rockets, for instance) from civilians. the presence of a slippery-slope shouldn’t keep me from taking a position in the more clear-cut cases, which ashley’s case is. if your only argument against this treatment is the slippery-slope argument, i don’t think it’s good enough.
5. i agree whole-heartedly with kaethe (comment #24) that the issue of reproductive choice is also bottled up in this case.
therefore, i can’t find any reason to oppose this treatment in this case, even though it “creeps me out” as much as it does anyone else.