The Ashley Treatment: A Feminist and Disability Rights Issue?
| January 4th, 2007I 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?
January 4th, 2007 at 10:43 pm
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.
This comment was written by Jess.Report this comment to the moderators
January 4th, 2007 at 11:14 pm
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.
This comment was written by sophomania.Report this comment to the moderators
January 4th, 2007 at 11:16 pm
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.
This comment was written by Robert.Report this comment to the moderators
January 4th, 2007 at 11:48 pm
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.
This comment was written by Auguste.Report this comment to the moderators
January 4th, 2007 at 11:49 pm
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 comment was written by Auguste.Report this comment to the moderators
January 5th, 2007 at 2:10 am
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.
This comment was written by Anacas.Report this comment to the moderators
January 5th, 2007 at 2:21 am
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?
This comment was written by Kathryn in California.Report this comment to the moderators
January 5th, 2007 at 7:45 am
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.
This comment was written by Lu.Report this comment to the moderators
January 5th, 2007 at 8:05 am
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.
This comment was written by ADS.Report this comment to the moderators
January 5th, 2007 at 8:28 am
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.
This comment was written by RonF.Report this comment to the moderators
January 5th, 2007 at 8:31 am
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 comment was written by Myca.Report this comment to the moderators
January 5th, 2007 at 8:33 am
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”???
This comment was written by Sara.Report this comment to the moderators
January 5th, 2007 at 8:44 am
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.
This comment was written by wookie.Report this comment to the moderators
January 5th, 2007 at 8:52 am
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 comment was written by Dianne.Report this comment to the moderators
January 5th, 2007 at 9:00 am
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.
This comment was written by NancyP.Report this comment to the moderators
January 5th, 2007 at 9:21 am
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.
This comment was written by Lu.Report this comment to the moderators
January 5th, 2007 at 10:27 am
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.
This comment was written by Tom.Report this comment to the moderators
January 5th, 2007 at 11:33 am
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.
This comment was written by pheeno.Report this comment to the moderators
January 5th, 2007 at 11:47 am
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. (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.
This comment was written by wookie.Report this comment to the moderators
January 5th, 2007 at 11:59 am
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.
This comment was written by Q Grrl.Report this comment to the moderators
January 5th, 2007 at 12:43 pm
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.
This comment was written by Lu.Report this comment to the moderators
January 5th, 2007 at 1:26 pm
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.
This comment was written by curiousgyrl.Report this comment to the moderators
January 5th, 2007 at 1:51 pm
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.
This comment was written by Rachel S..Report this comment to the moderators
January 5th, 2007 at 2:08 pm
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.
This comment was written by Kaethe.Report this comment to the moderators
January 5th, 2007 at 2:16 pm
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.
This comment was written by atlasien.Report this comment to the moderators
January 5th, 2007 at 2:30 pm
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.
This comment was written by Q Grrl.Report this comment to the moderators
January 5th, 2007 at 2:33 pm
“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.
This comment was written by Mandolin.Report this comment to the moderators
January 5th, 2007 at 2:39 pm
Ditto.
This comment was written by Myca.Report this comment to the moderators
January 5th, 2007 at 2:45 pm
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.’”
This comment was written by piny.Report this comment to the moderators
January 5th, 2007 at 2:50 pm
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.)
This comment was written by Robert.Report this comment to the moderators
January 5th, 2007 at 2:59 pm
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.
This comment was written by piny.Report this comment to the moderators
January 5th, 2007 at 3:08 pm
“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?
This comment was written by atlasien.Report this comment to the moderators
January 5th, 2007 at 3:15 pm
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 comment was written by Lu.Report this comment to the moderators
January 5th, 2007 at 3:17 pm
this is just so upsetting on so many levels
This comment was written by belledame222.Report this comment to the moderators
January 5th, 2007 at 3:25 pm
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.
This comment was written by piny.Report this comment to the moderators
January 5th, 2007 at 3:26 pm
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.
This comment was written by Myca.Report this comment to the moderators
January 5th, 2007 at 3:39 pm
“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.
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January 5th, 2007 at 3:59 pm
to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.” However opposition is strong with many condemning the parents using words like “sick” and “selfish”. This blogger says it is down to a lack of support from society. “I don’t want to be overly critical of parents raising severely 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
This comment was written by Channel 4 - Newsroom blog - What the bloggers say: 'Pillow Angel'.Report this comment to the moderators
January 5th, 2007 at 4:18 pm
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.
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January 5th, 2007 at 4:25 pm
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.
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January 5th, 2007 at 4:39 pm
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.
This comment was written by piny.Report this comment to the moderators
January 5th, 2007 at 4:45 pm
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.
This comment was written by Les.Report this comment to the moderators
January 5th, 2007 at 4:50 pm
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?
This comment was written by Lu.Report this comment to the moderators
January 5th, 2007 at 5:01 pm
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.
This comment was written by piny.Report this comment to the moderators
January 5th, 2007 at 5:10 pm
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.
This comment was written by Myca.Report this comment to the moderators
January 5th, 2007 at 5:13 pm
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?
This comment was written by Lu.Report this comment to the moderators
January 5th, 2007 at 5:20 pm
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.
This comment was written by piny.Report this comment to the moderators
January 5th, 2007 at 5:23 pm
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?
This comment was written by Myca.Report this comment to the moderators
January 5th, 2007 at 5:36 pm
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.
This comment was written by piny.Report this comment to the moderators
January 5th, 2007 at 5:39 pm
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?
This comment was written by Kathryn in California.Report this comment to the moderators
January 5th, 2007 at 5:40 pm
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?
This comment was written by Robert.Report this comment to the moderators
January 5th, 2007 at 5:44 pm
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.
This comment was written by atlasien.Report this comment to the moderators
January 5th, 2007 at 5:46 pm
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.
This comment was written by Kathryn in California.Report this comment to the moderators
January 5th, 2007 at 5:48 pm
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?
This comment was written by piny.Report this comment to the moderators
January 5th, 2007 at 6:03 pm
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.
This comment was written by Myca.Report this comment to the moderators
January 5th, 2007 at 6:06 pm
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.
This comment was written by Myca.Report this comment to the moderators
January 5th, 2007 at 6:10 pm
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
This comment was written by atlasien.2. hormonal surges combined with inability to masturbate
3. increased risk of cancer
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January 5th, 2007 at 6:29 pm
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.
This comment was written by Robert.Report this comment to the moderators
January 5th, 2007 at 6:40 pm
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.
This comment was written by Sally.Report this comment to the moderators
January 5th, 2007 at 6:46 pm
Honestly, I can see the hysterectomy thing way more than the mastectomy. That makes no sense to me.
This comment was written by curiousgyrl.Report this comment to the moderators
January 5th, 2007 at 6:46 pm
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?
This comment was written by Sally.Report this comment to the moderators
January 5th, 2007 at 6:50 pm
First, Blue has updated with clarification
This comment was written by imfunnytoo.here
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January 5th, 2007 at 6:59 pm
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.
This comment was written by Older.Report this comment to the moderators
January 5th, 2007 at 7:03 pm
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
This comment was written by imfunnytoo.Report this comment to the moderators
January 5th, 2007 at 7:16 pm
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.
This comment was written by Ampersand.Report this comment to the moderators
January 5th, 2007 at 7:18 pm
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/
This comment was written by curiousgyrl.Report this comment to the moderators
January 5th, 2007 at 7:22 pm
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.
This comment was written by Ampersand.Report this comment to the moderators
January 5th, 2007 at 7:24 pm
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.
This comment was written by gayle.Report this comment to the moderators
January 5th, 2007 at 7:28 pm
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.
This comment was written by Ampersand.Report this comment to the moderators
January 5th, 2007 at 7:32 pm
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.
This comment was written by Cyberpunk Hero.Report this comment to the moderators
January 5th, 2007 at 7:45 pm
Oh man, you guys are totally ew.
This comment was written by Thirza.Report this comment to the moderators
January 5th, 2007 at 7:46 pm
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.
This comment was written by Sally.Report this comment to the moderators
January 5th, 2007 at 8:08 pm
You’re right. Good point.
This comment was written by Ampersand.Report this comment to the moderators
January 5th, 2007 at 8:17 pm
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
This comment was written by curiousgyrl.Report this comment to the moderators
January 5th, 2007 at 8:20 pm
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.
This comment was written by Dianne.Report this comment to the moderators
January 5th, 2007 at 8:29 pm
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.
This comment was written by Wheelchair Dancer.Report this comment to the moderators
January 5th, 2007 at 8:29 pm
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”:
This comment was written by pdxWoman.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.
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January 5th, 2007 at 8:29 pm
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.
This comment was written by Dianne.Report this comment to the moderators
January 5th, 2007 at 8:53 pm
Yes, but I dont think they are routinely or would be suggested at all in that case.
This comment was written by curiousgyrl.Report this comment to the moderators
January 5th, 2007 at 9:46 pm
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.
This comment was written by Rachel S..Report this comment to the moderators
January 5th, 2007 at 10:07 pm
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.
This comment was written by Robert.Report this comment to the moderators
January 5th, 2007 at 10:13 pm
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.
This comment was written by PhoenixRising.Report this comment to the moderators
January 5th, 2007 at 10:14 pm
Others, though–Rachel at Alas a Blog, brownfemipower, the women at Just Dreadful, probably more by now–have. Just Dreadful sums it up, actually. i now feel i can pinpoint the feeling of “horror.”
This comment was written by Fetch me my axe.Report this comment to the moderators
January 5th, 2007 at 10:57 pm
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?
This comment was written by Auguste.Report this comment to the moderators
January 5th, 2007 at 11:15 pm
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.
This comment was written by piny.Report this comment to the moderators
January 5th, 2007 at 11:21 pm
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.
This comment was written by outlier.Report this comment to the moderators
January 5th, 2007 at 11:25 pm
>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?
This comment was written by outlier.Report this comment to the moderators
January 5th, 2007 at 11:29 pm
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?
This comment was written by Myca.Report this comment to the moderators
January 5th, 2007 at 11:31 pm
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 comment was written by Denise.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 !
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January 5th, 2007 at 11:34 pm
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.
This comment was written by Auguste.Report this comment to the moderators
January 6th, 2007 at 1:18 am
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.
This comment was written by Robert.Report this comment to the moderators
January 6th, 2007 at 7:32 am
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?”
This comment was written by curiousgyrl.Report this comment to the moderators
January 6th, 2007 at 9:13 am
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.
This comment was written by Polymath.Report this comment to the moderators
January 6th, 2007 at 10:00 am
Wow, I can’t believe the giant step backwards that the medical community and this family have taken. My mind is just racing with all the varied medical, social, political, ethical and mostly just basic human dignity concerns her parents actions have created. I have worked as a nurse in the field of developmental disabilities for over 15 years now caring for individuals whose cognitive levels span from severely impaired as Ashley presents to those who are gainfully employed, paying taxes, and contributing to their communities. After reading some of these entries , it is so disheartening to see that in the past 30 years our society has not evolved all that much in their understanding or persceptions of individuals with intellectual and developmental disabilities (ID/DD). These individuals for the most part no longer live in “institutions” as is suggested. Individuals with ID/DD reside in homes in every community across our great country just like you and I and yes, they do require additional supports in various ways depending on their unique and individualized needs, but who among us doesn’t need additional support and assistance in our lives. None of us are “fully independent” but rather interdependent. The staff in these homes although “not family”, provide excellent physical, emotional and spiritual suport to those entrusted in their care. There are many individuals like Ashley that I am fortunate to have had the privledge and honor to care for and who have taught me what is most important in life. It is difficult for families to make choices for their ID/DD loved ones, so I do believe that Ashley’s parents were trying to the best they could, I am just appalled that the medical community sanctioned and participated in Ashley’s physical infantization. These procedures were not “medical treatment” to cure, prevent or treat disease, they were performed as an act of “convenience” for the caregivers–
This comment was written by Maureen.Report this comment to the moderators
January 6th, 2007 at 10:17 am
Polymath, you’re right about the de-sexualization language. I should have referred to this as keeping her physically immature or something. Sex does indeed start in the old brain pain.
This comment was written by Robert.Report this comment to the moderators
January 6th, 2007 at 10:18 am
I would also like to add, that “pressure/bed sores/ulcer” do not come from how much one weighs. Pressure ulcers come from poor care. Not turning/positioning the individual off of the bony prominense of the body whether they be the heels, elbows or sacrum. So the parent’s excuse that the more she grows or weighs contributes to this potential occurance of this problen is ludicrious– again the ignorance
This comment was written by Maureen.Report this comment to the moderators
January 6th, 2007 at 10:23 am
i should add this caveat to what i said. maureen brings up excellent points about the care of disabled people, and an argument against this treatment from that point of view might very well exist, and i wouldn’t consider myself well-informed enough to argue for or against this treatment on those grounds.
what i should have said was that i disagree with feminist arguments against the treatment for the reasons i listed in my post.
This comment was written by Polymath.Report this comment to the moderators
January 6th, 2007 at 11:01 am
Denise said:
“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.”
Technical point here, but I don’t think hyperbole is indicated in this case: They left her ovaries intact. She still makes endogenous estrogen, and it will still come in natural cycles. In fact, she will still ovulate, but instead of going down the fallopian tubes into the uterus, the egg will be resorbed into local tissues.
You’re very correct that endogenous hormonal regulation is vital for a number of reasons (including but not limited to the prevention of osteoporosis - which this child will already be at risk for because she isn’t engaging in weight-bearing activities), but in fact she still has this function intact. I realize this may seem like a fine point, but assigning greater evil to the parents on medical groudns that they did not commit does little to shore up the case against them - it makes the writer sound ignorant. Many pre-menopausal women lead hormonally intact lives without their uterus, which may be removed for reasons ranging from cancer to childbirth emergencies.
This comment was written by skylanda.Report this comment to the moderators
January 6th, 2007 at 11:16 am
I would also like to point out the differential between the way the rape/molestation angle is presented by the family and by the media. If you read the BBC/CNN articles, you would think the family saw a pervert behind every curtain and thought they could protect their daugher by making her infantile and de-sexualized ’cause then no one would want her. If you read the family’s website, their mention of that aspect is brief, entirely secondary to the idea of avoiding the discomfort and complications of menstruation and having to position her around large breasts, and focused mostly on avoiding pregnancy if such a horrific situation does arise. Of the three reasons given to remove the breasts (as opposed to the uterus), only the third even mentions abuse, and only then it’s given as a possibility that avoiding large breasts may head off some temptation toward abuse - it’s not seen as a cure-all at all, nor a fundamental reason for doing the surgery. I don’t think these parents have totally bought into the standard American rape myths, nor have those rape myths driven the decisions behind the procedures. But you wouldn’t know that to read the BBC/CNN version of the case…hey, guess what, the media like the senstationalized version. In other news, pot black, and water wet.
This comment was written by skylanda.Report this comment to the moderators
January 6th, 2007 at 11:20 am
No, pot is usually green, maybe with a little red in there. If yours is black, you didn’t dry it properly and its gotten moldy.
This comment was written by Robert.Report this comment to the moderators
January 6th, 2007 at 12:12 pm
as a mother of an eight year old in similar condition to Ashley, all i can say is :
This comment was written by bourgeois amarantha.who are you to judge? try looking after a severely disabled person 24 hours / 24 hours with no respite…yes, it is disturbing tro see your pillow child grow up and to talk crudely change her diaper when she starts to show pubic hair. But nevertheless this child is growing to be an teenager and with a little luck an adult and I dont believe in preventing this. How about pulling out Ashley s teeth so she doesnt experience tooth ache…or take out her brain in case she has a sore head. Severely disabled people ARE people, with rights and even if they have no control over their bodies nether do their parents or care givers. So instead of going for this ashley treatment lets get together and organise some real care giving, education for our disabled children and respite for parents and families. You dont talk about Ashleys siblings reaction. Would you take out Ashleys sisters uterus in fear of sexual abuse, shes probably more at risk than ashley who is looked after at home whereas i presume the sister goes to school….
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January 6th, 2007 at 12:22 pm
If something were to severely disable me to the point that Ashley is at, I probably wouldn’t last long enough for the removal of those parts to be an issue due to my living will. For an adult to enter into a state like Ashley’s, you’re talking about severe brain damage and maybe bare consciousness. My living will forbids the use of a feeding tube under those circumstances.
This comment was written by hp.Report this comment to the moderators
January 6th, 2007 at 4:03 pm
So we have a bunch of people here who probably mostly call themselves feminists, and probably mostly consider themselves progressive, considering a certain kind of life so subhuman and alien to them that they’d rather die than be like that (even though they’ve never been like that long enough to know that), failing to question the medicalization of this woman’s life (including “mind of a whatever-month-old” — which is a medicalized, not an objective, way of looking at a person), failing to do just about anything but reiterate old half-formed prejudices about disabled people like men ranting about dimwitted blondes. Makes me remember why I don’t spend much time in that community.
Try spending some time seen as so not-there that you’re said to be too severely developmentally disabled to develop a cohesive personality structure, all your actions are seen as malfunctioning brain bits rather than reality, learning things at 5 and 10 and 20 and so on that most people are born knowing (and possibly never learning some of those things at all) and having “mental age” judged on that, learn to dissect that crap for what it is before you spew it back onto blogs like this one.
This comment was written by Ballastexistenz.Report this comment to the moderators
January 6th, 2007 at 4:04 pm
Rachel is selectively quoting from a much longer essay about the rationale for Ashley’s treatment. Sure, her parents are naive about how rape works, but they never claimed rape prevention was the primary rationale for the Ashley treatment.
The primary goal was to stop Ashley’s growth by inducing puberty early. Breast development and menstruation would have been unintended side effects of the growth attenuation. Since Ashley is only 9, precocious puberty is a serious problem. Doctors and parents would be concerned about precious puberty in a non-disabled child, so they should have the same concern for Ashley.
Ashley will still be a sexual being and have a normal hormonal profile. The media are sensationalizing the effects of the procedure. She has normal ovaries, so she will still have secondary sex characteristics, including pubic hair, hips, etc. Her features and proportions will be those of an adult woman. She’s just going to be shorter and have a flatter chest.
This comment was written by Lindsay Beyerstein.Report this comment to the moderators
January 6th, 2007 at 4:04 pm
Well, Robert, I could see a situation where a male would also have to be subjected to this kind of barbaric treatment with regards to stunting his physical growth. However, I still think the cultural fear of female sexuality is a salient feature here. I seriously doubt the parents would remove the sexual organs of a boy. And if they did I imagine there would be much more outrage and less justification for it.
Skylanda, I will apologize. I did not realize Ashley’s ovaries would be left intact. I am very glad for this because it would have plunged her body into an instant menopause and left her vulnerable to a wide array of health problems. In a significant amount of hysterectomies ovaries are also removed.
This comment was written by Denise.However, I still think it is a mistake to think of the uterus as a disposable organ and menstruation as unnecassry. Among other things menstruation cleanses a woman’s body of harmful toxins. Also, the uterus produces essential hormones. I am not a Doctor, ofcourse, but from what I understand the uterus may repspond to a hormone produced by the ovary. When the uterus is gone and the feedback ends the ovary realizes it does not have any place to drop it’s eggs so it essentially stops trying. I have read that half of all women who undergo hysterectomies will then have ovaries which cease to function. There could also be other physical problems related to removing her uterus. It is major abdominal surgery ! So, I don’t think it is such a minor thing to have a hysterectomy even without ovary removal. (Again, I am not a Doctor , but I am very interested in how the medical establishment regards the female body. Please everyone take the time and do your own research to educate yourself as much as you can and don’t take my word for it).
I am very skeptical of western medicine and it’s treatment of women. I do believe that most hysterectomies are not necessary. There are often less invasive measures that could be taken and preventative medicine is almost completely ignored for most ailments.
I feel it is irresponsible to subject a young girl like Ashley to a risky surgery and deny her her sexuality just because of something that might happen one day. Rape and menstrual pain are NOT inevitable. I am a big believer that menstrual irregularities are just symptoms of poor nutritional habits, stresses, and avoidable toxins in our environment. Regardless, there are less risky and more sensible ways to deal with any problems Ashley may have in life then to castrate her and fill her body with harmful synthetic hormones.
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January 6th, 2007 at 4:11 pm
Oh, and anything calling itself disability rights that’s got an IQ cutoff or a severity limit, isn’t disability rights, it’s something else.
This comment was written by Ballastexistenz.Report this comment to the moderators
January 6th, 2007 at 6:10 pm
Circumcision…
Noone asked me, Can I have some outrage too?
I’m not agreeing or disagreeing with her parents. I’ve got no freaking clue if it was right or wrong, I really don’t. I do know what it’s like to go from normal and healthy to being handicapped and facing a neuro-disorder that at any time can do anything to me, I know what it’s like to be looking down the barrel and trying to piece things together enough that my wife and daughter will be taken care of if my disease suddenly takes a turn for the worse. My wife and I didn’t our daughter’s ears to be pierced(and promised my mother in law legal action when she threatened to do it because “ALL little girls get it done” , not mine lady), not because I don’t think she should have her ears pierced, but because I think SHE should be able to choose, to understand that piercing requires maintenence(my wife and I have had several piercings), and to be able to decide for herself if piercing is right for her or not. These things come full circle to my initial statement, noone asked me, it’s bothered me ever since I found out someone would do such a thing without asking me, couldn’t it have waited? in short, yes but it didn’t and what is is(Too late to be changed after the fact).
Unfortunately with the child in question, noone will EVER be able to get her consent, and she should NEVER be allowed to bear children, NOT because she’s handicapped(i’d be in deep poo eh?) but because to have sex with her is to rape a child… even when she’s 40 years old. Is it a feminist issue? hardly, an issue of color? get over yourself, a disabled persons issue? maybe but only to a point, What it IS wholey is a basic human rights issue. I’m sick to death of hearing racist, sexist, religious calls to arms and quite frankly I find it as ludicrous as it is sad that any one group/club/movement would be in such a hurry to establish thier “rights” that they would trample over someone elses… nothing like hurting someone else to make yourself feel better eh? The most illuminating example of this that I have seen concerning this child is reading a statement where a disabled woman spewed out a statement that she herself had no mammary issues so this childs parents were wrong… YOU have no problems with YOUR boobs so leave this child alone? erhm… riiiiight. Again, please don’t confuse my venting as support for the parents(and certainly not for the doctors), I have no idea if what was done was right but i’m fairly sure that not many of us do. It’s easy to backseat drive, armchair quarterback, hindsight is 20/20, etc and so forth. Damned easy, but I don’t have a child in this condition and as much as I like to tell myself “NEVER” I cannot honestly say what i’d do after YEARS of caring for someone in her condition, to be well aware that she might well outlive me and be confronted with the very real possibility that when I die I might have just passed my child into a nightmare that most of us can’t even begin to imagine. Good thing she doesn’t know whats really going on, eh? phooey on that.
What’s worse, to have parts of your baby cut away or to feed them to a predator with a side of they can’t tell on you? I hope that no more of us ever have to answer this question, though I know that my hopes simply cannot prevent this.
All “ethics” and “morality” questions aside? some of the things the parents have said creep me the hell out, maybe its just the phrasing or word choices but they just seem…Weird.
This comment was written by Orestes.Report this comment to the moderators
January 6th, 2007 at 8:21 pm
Oh man, you guys are still totally ew! This is a fucked up conversation yo, it sounds an awful like you (generalized commenter you) are deciding who gets to be considered human. Because you’ve assumed a lot about her internal life since she can’t communicate it to you, and since I’ll bet most of you have never been close to a person with intellectual disabilities, you’re talking out of your arschloch. The last time I recall people making decisions on what constitutes a human being, people like Ashley were being gassed for convenience and a number of other groups deemed subhuman soon followed.
This comment was written by Thirza.But whatever, carry on, one post by me isn’t going to expand your perception of humanity.
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January 6th, 2007 at 8:21 pm
Denise, you said: There could also be other physical problems related to removing her uterus. It is major abdominal surgery !
Um, I know you’re “really interested in women’s health” but menstruation most assuredly does NOT “clean the body of harmful toxins.” And while I don’t know the particulars of Ashley’s hysterectomy, surely you’re aware that hysterectomies are also done vaginally.
This comment was written by Suzanne.Report this comment to the moderators
January 6th, 2007 at 9:01 pm
Thirza:
It’s pretty obvious that Ashley’s parents love and care for a person with intellectual disabilities, yet they disagree with you.
Thanks for showing that Godwin’s Law still applies.
No one is arguing that Ashley isn’t human. The disagreement is over how to best serve Ashley’s interests, since Ashley herself isn’t able to state her preferences.
This comment was written by Ampersand.Report this comment to the moderators
January 6th, 2007 at 9:13 pm
Suzanne,
This comment was written by Denise.I do know that hysterectomies are also done vaginally, but, from what I understand abdominal hysterectomies are still performed in the vast majority of cases. I don’t know which method(adominal hysterectomy or the less invasive vaginal hysterectomy) is to be used on Ashley , but, my point remains the same : I do NOT favor this kind surgery with all of it’s risks for anyone unless it is a medical necessity.
And, Oh, I just absolutely disagree with you about menstruation. I have read that a woman’s blood pressure is lowered during a normal menstrual cycle and the bleeding rids the body of excess stored iron. During the childbearing years women have significantly less chance of having heart attacks and strokes than do men. This biological protection is greatly diminished with the onset of menopause. I really think it dangerous to regard menstruation as an unnecessary process.
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January 6th, 2007 at 9:13 pm
I respect you a lot, and I realize that you know a lot more about these issues than I do. But don’t some rights need to be contingent on intellectual ability?
For example: If an 20 year old wants to walk out of his house and go off on his own, he has that legal right. His parents can’t legally stop him.
But if a 20 year old with intellectual disabilities isn’t able to cross a street safely, to find his way back home, or to recognize and avoid physical hazards, then it should be legal for his parents or guardians to prevent him from leaving home unaccompanied — even if sometimes he clearly wants to go off on his own.
This comment was written by Ampersand.Report this comment to the moderators
January 6th, 2007 at 9:47 pm
What Rachael S. and others have said about more focus needing to be on improving the resources and services for families who take care of disabled children. I knew a woman who had a son, who was severely autistic and quite large and heavy at 20 years old, but what she felt she needed was assistance to take care of her child when she was working and sometimes help at home, and that more people would be educated on autism and not stigmatize her child.
Hysterectomies can be done vaginally but aren’t those usually done on sexually mature adults women? And removing the uterus can cause the ovaries to cease producing hormones sometimes.
What makes this difficult is the history towards women and disabled women and men. People base decisions on what to do regarding the individuals in terms of what they would want in that position as able-bodied people in an ableist society. But many people who are disabled believe differently than this and it’s their experiences.
What is dominating this thread is the ableist perspective, but at least here, there’s not much perspective presented from the point of view of people who themselves are disabled.
I don’t judge the parents in the sense that I’m not in their shoes but if our society changed the way it views these issues and offered support based on changing that, there would be other options which would change the options people used to try to cope. But that’s not being done, because in our society we don’t value either the people who are disabled or their families. Our history is filled with eugenics and doing all kinds of things to put disabled people in a group that is easier for able-bodied people to manage. That’s why despite my sympathy for the parents, this and some of the comments here just make me nauseous.
A mastectomy to prevent rape is stupid. Women and girls of all ages get raped whether they have sexually mature breasts or not. If she’s female, she’s at risk to be raped, if she’s disabled, she may be at risk for that reason as well. Surgery to try to make her appear less female and less disabled(or what people here have called “grotesque”, a comment often used with disabled people) isn’t going to change that much.
This comment was written by Radfem.Report this comment to the moderators
January 6th, 2007 at 9:57 pm
I’m not sure if that’s the “rights” that were being discussed because it seems that the “rights” in this thread are more fundamental.
What bothers me too has to do with what the first statement reads, in terms of putting limits(which are most likely decided by able-bodied individuals) on who is disabled and thus has rights and who is disabled and does not enjoy these rights. Or if you are *too* disabled, again as decided by able-bodied people, are you too disabled to have the rights that less disabled people have?
This comment was written by Radfem.Report this comment to the moderators
January 6th, 2007 at 10:07 pm
[Really asinine statement by Amp, edited out by Amp.]
I certainly agree that every ablebodied person interested in this issue should be making a point of seeking out and reading/hearing disabled views; that’s obviously essential. However, I’m not sure that any person who is able to speak or write, is really able to address this issue from a perspective similar to Ashley’s, whether or not the person is disabled.
Radfem, with all due respect, this comment indicates that you haven’t carefully read the comments you’re criticizing. No one on this thread has used “grotesque” as a word for “disabled” or for “female.”
Lu said “It’s grotesque to require her parents to let her body reach an adult size and shape so that they can no longer provide… care.” That’s not at all the same as what you claimed. All the other uses of “grotesque” on this thread, are criticizing Ashley’s parents’ blog for using that word.
This comment was written by Ampersand.Report this comment to the moderators
January 6th, 2007 at 10:18 pm
I’m not sure if that’s the “rights” that were being discussed because it seems that the “rights” in this thread are more fundamental.
Indeed. We’re talking about something very different than what was described, and the comparison between being able to go outside on your own and avoiding a fundamental violation of your body for others’ convenience is stretching things a good deal. Certain fundamental rights are just there, and the privilege of being able to run around discussing people’s “best interests” (nearly always an ableist term when applied to others) lies with those who think they are superior.
And I would actually say that anyone calling their child a “pillow angel” only thinks they love their child. Something that calls itself love while actually denying the existence of the person is hate, even if the people feel warm fuzzy emotions while doing it. Love and hate aren’t emotions.
Although I also have to comment on the example given:
But if a 20 year old with intellectual disabilities isn’t able to cross a street safely, to find his way back home, or to recognize and avoid physical hazards, then it should be legal for his parents or guardians to prevent him from leaving home unaccompanied — even if sometimes he clearly wants to go off on his own.
I’m a cognitively-disabled 26-year-old, and my daily adaptive functioning (as opposed to intellectual functioning) is regarded as a tier up from as low as possible. In the medicalistic world where crap like that is enumerated, anyway.
I cannot cross streets safely, sometimes because cars that are moving seem to disappear, sometimes because I don’t actually remember at that point what a car is or the significance of death or anything, sometimes because all I can think about is that neat set of lines in the middle of the road that I can stare at and follow up close.
I am frequently unable to get back home (rarely unable to find home — my sense of direction is intact through almost everything, even when I understand little else including what “home” is — which is more likely to be the issue) for similar reasons.
I have great difficulty avoiding physical hazards because of the same reason that I have trouble with cars. If I’m having to concentrate on getting around, everything’s a big mass of shapes and sounds and colors and textures, and I interact with them on that level rather than on the level of standard conceptualization (even basic abstraction such as simple categories often being missing) and danger and so forth. (A world that all of you on this thread who totally fear loss of your precious abstractions — as loss of “self” even — ought to visit from time to time before you condemn it as an empty soulless existence.)
Add to that the fact that at the age of 23 some people tried to pull the “get in a car with me we have a toy for you” routine to kidnap and (from what they were saying) rape me and the only reason I didn’t go with them was total coincidence totally unrelated to my conception of them as dangerous, because I was unable to figure that one out.
And so many more examples.
Moreover, I do go outside, and do run into these dangers, more often than most intellectually disabled people I know (who for the most part are far more competent than me at these things, even when they’re people who’re under guardianship and not technically allowed to do them).
Should I be allowed to go outside without a note from my mommy?
This comment was written by Ballastexistenz.Report this comment to the moderators
January 6th, 2007 at 10:31 pm
None of us is able to address this thread from a perspective identical to Ashley’s if we can speak or right.
However, as someone who was considered to be too severely disabled to have even developed a personality, to be a random collection of brain impulses of various sorts doing things for incomprehensible reasons, and as someone whose perception of the world at times has worked so differently that the kind of thinking I best engage in (and the parts of the brain science says I likely do them with) have been not considered real human thought, I have a sight more clue than a lot of people (including a lot of disabled people) what it means to experience the total externally-based erasure of one’s personhood for others’ convenience (and to have existed in Singerian “non-personhood” much longer than people are supposed to, and other conceptions of “non-personhood” as well, still often being applied to me in the offline world on a regular basis).
And this is more about oppression than impairment. If you make it a medical thing you’re just engaging in the same old ableist bullcrap everyone does, drawing the line somewhere below yourselves, but still drawing the darned thing.
You want to know about being an unperson though: Being An Unperson, an open-captioned YouTube video I made on the subject (and tell me, how many of you would believe I wrote this if you met me on the street?).
This comment was written by Ballastexistenz.Report this comment to the moderators
January 6th, 2007 at 10:53 pm
Ballastexistenz, I would not argue that you should not be able to decide whether or not to leave the house yourself. My example was intended to suggest a hypothetical someone with the mental abilities of the one-year-old girl I live with, but with a 20-year-old body. I’m sorry I failed to make that more explicit.
Maybe my example was bad (and is still bad). But let me ask: Do you acknowledge that there is such a thing as a level of intellectual disability at which a person is actually unable to make decisions for himself or herself?
First of all, you seem to be assuming that Ashley’s parents are baldfaced liars who don’t care about Ashley. I’m more inclined to take them at their words that they are genuinely concerned for her happiness and comfort.
Second: A few people, both ablebodied and disabled, have suggested this distinction between “fundamental” and non fundamental rights. I don’t understand where your “fundamental” line is drawn; to me the distinction seems an ad hoc rationalization.
Whether we’re talking about involuntary surgery or involuntary imprisonment, in my opinion the right involved is the same fundamental right: The right to be free from the authority and control of another person. And that right does not apply to someone with Ashley’s intellectual disability, unless her condition has been inaccurately described.
If I’m understanding which rights you say are “fundamental” and not fundamental, you’re trying to suggest that the right to bodily integrity is more fundamental than the right to freedom from other people’s authority and control. On what basis do you make that hierarchy?
Both disabled and abled critics of Ashley’s parents seem to feel that it’s a horrible insult to fundamental rights for a body to ever be altered unless absolutely necessary. Maybe I’m weird, but I don’t agree with those priorities. If Ashley will be happier and more comfortable with the treatment — a big “if,” I realize — then in my opinion that would justify the treatment. Ashley’s right to be as happy and comfortable as she can be should be considered at least as essential as her right to have an unaltered body.
I think the “pillow angel” vocabulary, and the criticisms of it, are rooted to a great extent in regional and class differences.
Ashley’s parents seem to me like most parents - they want to care for their daughter, want her to be happy, and take joy from being with her. In my book, that’s love.
This comment was written by Ampersand.Report this comment to the moderators
January 6th, 2007 at 11:08 pm
My criticism of the pillow angel concept is not of the vocabulary, it’s of a concept that I have been directly imprisoned by and am lucky to have been able to escape from. I would rather be tortured than subjected to it again. I’m sure different regions and classes have different words for it, it is no more or less noxious and no less worthy of criticism in every last one of its forms.
And by the way, I don’t suggest that they are meanspirited. Hate doesn’t have to be meanspirited. Hate can be executed with the best interests of the hated in mind and every “loving” feeling and sense of doing things right all aglow in the hearts of the haters. I don’t believe that they’re lying, I simply believe they’re utterly wrong both factually and ethically.
Ballastexistenz, obviously, I would not argue that you should not be able to decide whether or not to leave the house yourself. My example was intended to suggest a hypothetical someone with the mental abilities of the one-year-old girl I live with, but with a 20-year-old body. I’m sorry I failed to make that more explicit.
If said hypothetical person could somehow magically tell you to take your head out of your ass on the matter of mental age, would you, or would you pat them on the head, say “I don’t mean you,” and go on imposing it on everyone who couldn’t talk back?
That’s the major fallacy of everything most of you say here. Ableism stands until proven otherwise. That’s not how it’s supposed to work.
And no, I don’t believe in people who can’t make decisions, only people who can’t comprehend certain kinds of decisions in certain particular ways at certain particular times, but I utterly refuse to name which ones they are and aren’t (because we are not discussing a hypothetical person here, but a real one) and utterly refuse to impose a line of crap on those I believe aren’t about how every last prejudice I and those close to them hold towards them(/us) is in their(/our) best interests. And I’m not going to get into an argument on your terms because I think your terms are laden with the same crap the rest of this discussion is, and nothing productive could come of accepting them.
But tell me, why does the fact that I’m something you deem intelligent make the big difference in whether you want me allowed outside? (A lot of people have had very good reasons, at least as good as yours if not better, for not wanting me allowed outside.) If I could not prove my intellect (however you define intellect, at whatever vanishing point in time) to you, you would feel totally justified in stripping away my bodily integrity and my ability to move about on my own, because my “outdoor-walking-around-skills” themselves are certainly well within the imaginary range you put forth. The only difference is I can talk back to you in a way you can’t deny.
This comment was written by Ballastexistenz.Report this comment to the moderators
January 6th, 2007 at 11:44 pm
Ballastexistenz:
I’m apologize if I’ve been ablist. I don’t see it; I think there are legitimate issues to be discussed. But it’s more than possible that I’m mistaken, and that my own abilism is blinding me. I’ll revisit this discussion, and try to see if my disagreement with you is just based in illegitimate abilism.
I think that some people are not mentally capable of making even basic and essential decisions for themselves, and that it’s possible that Ashley currently is one of those people. I also think it’s possible that Ashley will remain such a person for the rest of her life. Any reasonable discussion of Ashley’s caretaking, in my opinion, has to acknowledge that possibility. I don’t, at this time, think acknowledging these facts is something only an ablist bigot would do.
[Off-topic response deleted by Amp.]
This comment was written by Ampersand.Report this comment to the moderators
January 7th, 2007 at 12:06 am
Yeah, ballastexistanz, I’m being ableist and struggling a bit with my thoughts, and I’m uncomfortable with what was being done with this young girl in ways I can’t quite articulate.
And you raise a good point about personhood and who’s allowed to be one and who’s not, because I think that’s a major issue.
I tried to raise the medical issues because I guess I’m still trying to figure out what’s supposed to make sense with them being done. For her parents, it’s for one reason they gave, which is to take better care of her for longer. For people here, it’s because they would do it themselves from the perspective of being able-bodied in a society that values able-bodied over those who are disabled. But that’s not the only opinion though it’s often held up as the only reasonable one. The problem is that historically, what shaped that perspective is what also helped catalyze various programs including eugenics, sterilization and various surgical procedures involving disabled people. That’s what makes me queasy.
I wasn’t talking as much as how many able-bodied perspectives on this thread but that the whole issue was framed on an ableist perspective. I think that’s part of the problem in my opinion and it does go to the issue of a person being rendered a nonperson which is another issue that others have raised that I agree with. After all, the eugenics, sterilization and other measures were done after the person had essentially been dehumanized, whether it’s because they are disabled, and/or a person of color.
Amp, with all due respect, I believe that I read one comment referring to a person with the mind of an infant being in a grown’s women as being “grotesque”. And yes, I did read all the comments as repulsive quite a few of them were.
I’ve read several threads on this issue where the perspective is somewhat different, than if this happened to me, I would do this almost as if that were the norm. On other sites, there’s more of a look at the issues that ballastexistanz mentions that haven’t really been raised here.
As for doctors, the one that delivered me didn’t hold out much hope for my future, due to brain damage I had suffered mostly from his delivery technique, heh. I was left with some speech impairment and gross motor coordination issues, but not really much, not as much as they thought. Oh, and I was supposed to get epilespy but that didn’t happen. So doctors aren’t always right when they predict future outcomes.
But then that same doctor was so certain my mother could never conceive me and my younger siblings after she lost one ovary and had one that was determined to be nonfunctioning but for some reason, that ovary decided to take over for the missing one. As a result, my blood siblings and I know which ovary we originated from but that’s about it.
So I’m not sure I trust doctors all that much. I do believe that they are supposed to by oath, do no harm and I’m not sure that’s the case here(just as it is in others as well).
This comment was written by Radfem.Report this comment to the moderators
January 7th, 2007 at 12:13 am
Radfem wrote:
The only such comment on this thread was a quote of something written on a different website. The person who quoted it (Anacas, in comment #6) did so for the purpose of criticizing it. To attribute the sentiment in the quote to someone here, merely because it was quoted and criticized here, is inaccurate and unfair.
Edited to add: Needless to say (and yet I’m saying it!), I’m sure it was an honest mistake.
This comment was written by Ampersand.Report this comment to the moderators
January 7th, 2007 at 2:45 am
Amp I’m going to go back to your example - even though it’s probably outlived it’s usefulness. I think it makes an interesting example of the problems with the way people think about disability.
One of the most useful concepts I’ve had for conceptualising disability is that there’s a difference between impairment and disability. Impairment is the way your body is different from other people’s. Disability is the way that impairment interacts with society to restrict your ability to do stuff. I’m sure you know this, but it works in the example you gave. The problem isn’t just the development of the hypothetical person, it’s also the cars. We could set up a society where cars didn’t (say all driving happened underground, or we had an awesome public transport system) . I think our goal should be to construct a society that works with all sorts of bodies, rather than just the standard body. So that no-one’s rights would be infringed because of the way their body interacted with society.
The issue here, I think, is less to do with rights - the problem is (from what we’ve been told and at the moment) Ashley can’t consent to any medical procedure, she also can’t consent to the with-holding of any medical procedure.
The right when it comes to medical procedures isn’t to have certain procedures or not have certain procedures, but to choose for yourself the course of action you are going to take. The problem is who makes the decision on what treatments are given, and what range of treatments are acceptable, if the person can either not decide, or not communicate that decision. I honestly don’t have the beginning of a clue, I don’t think what we’ve got at the moment is the right answer, but on the other hand I’m not sure what a better solution would be.
Edited to add: To clarify - I do believe in bodily self-determination and I don’t think any disabled people are exempt from that. The question, for me, is how can that be exercised when there are limitations to someone’s decision making, or communicating abilites in the society we live in.
This comment was written by maia.Report this comment to the moderators
January 7th, 2007 at 3:27 am
The ticking bomb scenario:
A hypothetical someone with the knowledge of a ticking bomb which, if it goes off, will kill thousands of people, and which knowledge could be tortured out of them.
Problem number 1. How do we know that we’re not torturing an innocent person?
Problem number 2. If we allow torture in this instance, where do we draw the line?
Problem number 3. How comfortable do you feel debating this with an innocent torture victim?
This comment was written by Daran.Report this comment to the moderators
January 7th, 2007 at 4:45 am
Problem number 4. the hypothetical circumstances are very different from those the real torture being justified by the ticking bomb argument.
This comment was written by Daran.Report this comment to the moderators
January 7th, 2007 at 8:04 am
This has been a very interesting thread. I just wanted to add that when the parents drew a link between removing Ashley’s breasts and sexual molestation, they may have meant not that the presence of her breasts could raise the odds of a rape, but that the breasts themselves would be vulnerable to sexualized explorations from caregivers who would in the normal course of care often come in close contact with them.
The mention of the large breasts in the family makes me wonder if some of the adult women in it, possibly the mom, have personal experience with the “cop-a-feel” scenario, which tends to be much more directed at 12- and 13-year old girls who don’t yet know how to defend themselves.
This comment was written by Emily.Report this comment to the moderators
January 7th, 2007 at 9:31 am
There are several simple and less drastic solutions to improve Ashley’s quality of life. I’ll address her inability to move independently, as this is clearly her parents’ greatest concern. A tilt-in-space wheelchair would allow Ashley to lay back (her preferred position) and avoid bed sores. A Hoyer lift would make it easier for her parents to move her from place to place. Or, an overhead track system could be installed in her home (this is a common feature on Extreme Home Makeover) to streamline the process of moving her throughout the house. Her parents could employ relief workers in the home (at no charge to them) to increase the amount of care Ashley is receiving.
This comment was written by Erin.There are two pieces of the parents’ blog that I found most disturbing. The first is that they seem ambivalent about Ashley’s ability to communicate her wants and desires. After looking through Ashley’s photos (which highlight her smile and ability to enjoy life and make human connections) I am convinced that she has the potential to communicate with others using a communication device. Assistive technology has come a long way, and by using eye gaze or head movements to control a communication device, I’d bet that Ashley would have a lot to say.
Another disturbing aspect of the parents’ blog is found in the photo section. Ashley’s face is available for the world to see, yet her parents’ and siblings’ faces have been totally blacked out to protect their identity. I’ll assume that if Ashley didn’t give consent to have her growth stunted, she didn’t give her consent to have her photos on the world wide web. I just don’t see why her parents have decided that it’s wonderful to display Ashley’s face but it would be detrimental to her siblings to be associated with her.
There are hundreds of thousands of families who provide care for their children and treat them as individuals, regardless of their size or adolesent development. It’s alarming to me that Ashley’s parents feel that they have the right to stop her future without her consent.
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January 7th, 2007 at 9:53 am
This is all great and everything, but the parents’ primary motivation was the growth attenuation so that they could better care for her, which is very real as anyone who has taken care of a severely disabled person knows, and the growth attenuation would lead to very real and concrete benefits, so could we please all stop lying about the family’s primary motives being wanting to de-sexualize her or keep her looking cutesy-poo or not wanting to see their little girl get big boobs and be hot-hot-hot to potential rapists at the nursing home? This is about as out-of-context as can possibly be.
There’s also a great post over at Amanda’s about the Hoyer lift (the type of lift that is needed for a full-grown adult who is incapable of assisting in movement) and how that limits the person’s activities, functioning and interaction compared with a person who can be reasonably moved by their caregiver. Several rather ignorant people are assuming that it’s “merely for the caregiver’s convenience” and ignoring the fact that when the parents can’t lift her anymore, she’ll be resigned to very little movement, not being part of the family activities, not being able to interact with the outside world. And all the bullshit about “well, if there were only more respite care workers” doesn’t solve that, because respite care workers would be faced under the same constraints.
If your (abled) child had a growth disorder such that it was expected that he or she would reach 8 feet tall, would you consider growth attenuation? I absolutely would, because I couldn’t take care of an 8 foot 5-year-old. Same difference, really.
This comment was written by Suzanne.Report this comment to the moderators
January 7th, 2007 at 10:01 am
Sally writes: “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.”
That’s so stupid, to just give her ibuprofen before her period once a month for the next 40 years, when you can get rid of the pain entirely in one swoop.
This comment was written by Suzanne.And the breast-bud-removal surgery isn’t anywhere near comparable to breast-reduction surgery in an adult woman.
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January 7th, 2007 at 10:15 am
Piny, you said: ” 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.”
Well, duh. But that’s no different for Ashley than it is for anyone else. As anyone so profoundly disabled grows bigger, their abilities to be well cared for, moved frequently, stay within a family unit and be part of the family’s day to day activities, goes down because PHYSICALLY, their caregivers can’t move them as much as they could when they were littler. And an army of respite care workers doesn’t change that, unless respite care workers magically develop superhuman strength. You keep assuming that this is somehow Ashley’s family’s “fault,” that they’re either ignorant of or have refused to get available help that solves the problem of when-they-get-bigger. There IS no solution. Unless you want to use growth hormones to create a class of supertall, superstrong respite care workers, I suppose.
Anyone in a similar situation to Ashley faces the same dilemma. Stay at home and be increasingly less lifted, moved about, interacting with the family because it’s not physically possible … Or be moved into an institution and be increasingly less lifted, moved about, and interacting with others because it’s not physically possible. In someone that disabled, being normal adult size is a “handicap” - and I use that word in quotes deliberately - compared to being on the small side.
Take two grown adults with situations comparable to Ashley’s. One is a grown female who is 5′ and 100 pounds because that is what she was genetically predisposed to do / be. One is a grown male who is 6′4″ and 250 pounds because that is what he was genetically predisposed to do / be. All else being equal - loving families, caregivers, the whole thing - the female in this case is going to be better off. She can be more easily moved about, preventing bedsores; she can be turned more frequently, more easily positioned in wheelchairs, more easily brought to interact with the family, more easily able to be taken outside / in public situations / friends’ houses, than the male who requires a lift and therefore is stuck with wherever the lift is. That’s a biological, inescapable issue, Piny.
This comment was written by Suzanne.Report this comment to the moderators
January 7th, 2007 at 10:22 am
Erin, you wrote: “After looking through Ashley’s photos (which highlight her smile and ability to enjoy life and make human connections) I am convinced that she has the potential to communicate with others using a communication device. Assistive technology has come a long way, and by using eye gaze or head movements to control a communication device, I’d bet that Ashley would have a lot to say.”
Is your last name Frist, by any chance?
Lots of people were “convinced” by looking at videotape of Terri Schiavo that she was really smiling at her mother too and that she was in there, somewhere. Say! Let’s all substitute our armchair diagnoses and wishful thinking for what actually is! We can call ourselves Republicans, while we’re at it.
Sorry, this SO reminds me of the Schiavo case, in which wingnuts were convinced that if you could somehow find the girl in the body and get her to communicate somehow, well, she’d just HAVE to have the same feelings that THEY did.
This comment was written by Suzanne.Report this comment to the moderators
January 7th, 2007 at 11:20 am
Yet nobody suggests solving that problem by cutting the breasts off 12- and 13-year old girls.
My initial response to this story was the same as Rachel’s :-O :-O
The ‘yuk’ meter went into overdrive, but for a while I couldn’t articulate a rational response.
But as the discussion went on, it became clearer and clearer that all the arguments in favour of the treatment were ablist.
Question for the women: Would any of you choose a double mastectomy now, assuming that your doctors told you the operation would significantly reduce the risk of breast cancer later in life?
Would any of you choose it to reduce the risk of rape, asssuming that there was, in fact, no evidence that it would do so?
To reduce the risk of a grope?
Hell, let’s suppose it’s a certainly that you’re going to be groped from time to time. Would any of you opt for a double mastectomy to eliminate that certain eventuality?
This comment was written by Daran.Report this comment to the moderators
January 7th, 2007 at 11:44 am
Daran, what do the choices that would be made by an adult woman who is able either to care for herself, or to articulate her choices for care to those who will actually be performing the tasks, have to do with the choices that have to be made on behalf of someone who is totally helpless, and for whom all choices and all tasks will be done by proxies?
It’s like criticizing someone fighting a civil war in Africa for using force to defend their farm, by asking an American suburbanite “so would you choose to go around killing people to prevent incursions on your land?” The situation is so starkly different that the act of formulating the question defines new levels of the word “obtuse”.
This comment was written by Robert.Report this comment to the moderators
January 7th, 2007 at 11:50 am
To add to what Suzanne said above about Erin’s assertion that this child could communicate if only given the proper assistive devices:
I’ve worked with comatose patients before, and while that is a somewhat different problem in the brain than Ashley’s condition, you would be amazed at the expressions, eye movements, and other facial features that people can conjure up even when totally lacking higher brain function (both those who have lost it permanently and those who have only lost it to temporary conditions), and moreover, how utterly difficult it is for even senior experts to sort out the difference between purposeful tracking eye movement from random motion that doesn’t represent anything that we recognize as vision, sight, sensory integration, etc. I can absolutely see how half a dozens experts could look at Terri Schiavo and half would come out saying she is certainly reacting to stimuli and the other half saying that was nonsense. None of that changes the fact that at autopsy she was found to be cortically blind - that is, the part of her brain that deals with sight was atrophied and as far as medical science was able to tell, entirely gone.
Which is NOT to say that this automatically means that Ashley is or is not communicative - just to say that armchair assertions based on photos one has seen over the internet about how communicative a child is are grossly naive and somewhat offensive to the parents who have lived with the child for over nine years. Especially given that these parents appear to be very plugged into the medical/education system and very empowered/educated themselves, and have quite likely already tried everything under the sun to figure out what’s going on with their own kid.
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January 7th, 2007 at 1:10 pm
I’ll say upfront I’m a little uncomfortable with what the parents did (was kind of horrified when I first heard about it), but I’m not ready to condemn them or their choice. I think the big issue that would determine it for me is the actual cognitive capacities of the child. It seems there is some disagreement about what a “mental age of 3 months old” means exactly and that is the crux of the isssue for me. Some posters here seem to imply that the medical claim of Ashley’s mental age is suspect or that doctors just simply can’t know whether her mental capacities can ever improve. I’m open to these possibilities, but I would need more evidence to be convinced. (I.e. how common is it for doctors to be wrong about potential significant improvement in mental capacity in such very severe cases?) Other posters have seemed to want to argue that even if Ashely does have the same mental age as a 3 month old, there is something morally relevant about the fact that she has had that mental age for 9 years. (I don’t really understand how this claim works.) I feel like I would need to know more about the mental capacities of 3 month olds and more about medical accuracy in these types of cases to really take a firm position on Ashley’s case in particular. Also, I think there certainly are some strange and problematic gender issues here–especially about the assumptions of rape.
I find it interesting, though, that much of what has been said here–especially issues of rights and cognitive requirements for rights–brings up abortion issues. Some posters seem to object to the idea that moral status or moral rights could be tied to mental capacities. I find that interesting because I take it to be obvious that this is case, and it seems that often feminist positiosn regarding abortion also take this to be the case.
For example, I take it as rather obvious that the justification of abortion is largely based on facts about their cognitive abilities (really the lack thereof) of early term fetuses. I take it that fetuses do not have anything like our moral standing *because* they do not have anything like our cognitive (in addition to lacking our emotional or social) abilities. I take it that, for this reason, my cats are actually have signficantly more moral status than a blastocyte. I think that it follows from this that infants do not have anything like the moral status of average adult humans. Specifically, I don’t think fetuses or my cat or infants have much in the way of rights. (Maybe they have some vague right not to be tortured or something.) But, I certainly don’t think they have anything like autonomy rights. In order to have such rights one would actually have to have some capacity to be autonomous–to have 2nd order and higher desires (i.e. desires about desires) or something like that and be able to decide which of those to act upon.
I also noticed numerous posters who appealed to Ashley’s being human as what grounds her “rights”. I don’t know what sense of “human” is being used here, but this reminded me of the common fallacious argument against abortion that “1) A fetus is human. 2) All humans have rights. Therefore, 3) fetuses have rights.” This argument is fallacious because if humanness here means membership in the species homo sapiens, then premise 2 just begs the question and is speciesist for no good reason and looks to be obviously false (brain dead people whose hearts are beating are members of the human species, but they do not have rights). Perhaps the posters here meant human in a different way?
Anyway, what I see happening is a kind of being pulled in two different directions with the paradigm of abortion pulling one way (mental capacities are clearly highly relevant to determining moral status and rights–how else are we going to exclude fetuses from having rights?) and the paradigm of disability rights pulling another way (mental capacities can’t be relevant to moral status and rights–otherwise severely mentally disabled people will end up being treated like animals). (To complicate things further, what about the paradigm of animal rights?)
This comment was written by activistgradgal.Report this comment to the moderators
January 7th, 2007 at 3:40 pm
>>Question for the women: Would any of you choose a double mastectomy now, assuming that your doctors told you the operation would significantly reduce the risk of breast cancer later in life?>>
If I had a high chance of breast cancer in the first place? Sure, I’d consider it. Why wouldn’t I? They’re only a part of my body. They’re not ME.
And back to Ashley. What’s better for her? To be able to be carried around and participate in her family’s life (carried from bed to living room, to family room, maybe outside, to friends’ houses, on vacations, etc.) … Or to be dependent on a Hoyer lift and not moved as frequently, thus increasing the chances of some pretty serious things (bedsores, bone fractures, etc.) as well as decreasing her quality of life? All because people not even involved with her care think it’s more important that she be 5′6″ instead of 4′6″ because it’s “natural”? Well, Ashley’s “natural” state is dead, so screw natural.
This comment was written by Suzanne.Report this comment to the moderators
January 7th, 2007 at 3:47 pm
On a small side note: You might have realized that this is not the place for political correctness or enraged discussions about principles. So let me tell just mention, that although I generally agree with the writeress of this blog I also want to stress again that I can just laugh and shake my head about why some frustrated women are always trying to subvert everything they can to their course. Why the fuck is this a feminist issue? What if it was a boy? You are not seriously
This comment was written by nemesiswish.Report this comment to the moderators
January 7th, 2007 at 3:52 pm
I don’t have a very well-educated perspective here, besides what I’ve been able to glean from the great disability-related blogs I read. I haven’t spent much time or been very close to anyone with a noticeable disability - I don’t even have a lot of experience with three-month-olds. When it comes to these questions, though, I think it’s necessary that if we’re going to guess, we err on the side of life and human dignity. Abortion involves embryos which are pre-human - Ashley is pretty clearly beyond the time when we should be questioning whether we call her a “fetus” or a “baby,” so let’s please have that discussion when it’s relevant.
Me, I was totally disgusted when I read about “the Ashley treatment,” and still haven’t seen any reasonable justification for taking a scalpel to her healthy body. maia says upthread that the problem lies in the fact that Ashley can’t consent to medical procedures, but she can’t consent to the withholding of medical procedures. Huh? You either consent or withhold consent. The implication seems to be that Ashley by virtue of her disability has a knife dangling above her reproductive organs and her parents need to make a decision as to whether to cut the cord or not.
But there is no knife, above Ashley or anyone else. Her caretakers are in a position where they have to use their own judgement of the little information they can glean from her to make decisions about her life. I’m sure that sometimes they simply have to guess until they can make her happy or circumstances change so that she’s happy. They simply can’t proactively make decisions that they know will make her happy, so my hope would be that they would avoid making decisions for Ashley that they don’t have to. And elective surgery is the very defninition of something you don’t have to do. Just imagine if they’d taken this to the opposite extreme and given her breast implants so she’d have a body that looked more like what people are used to thinking of as human and valuable. It’s just as unnecessary, it’s just as invasive, and just as much a random decision that can only ethically be made by her parents if necessary.
The “she won’t be using these organs” argument gets to me the most - these are organs that other people won’t be using. If they’re in her body and functioning normally, she’s using them. She’s pumping blood through them, and her normal, and accepted as “healthy” in everyone else, body functions will be prevented by this surgery.
When we’re talking about the rights Ashley is entitled to, there are obviously some that aren’t applicable, even if they are hers for the taking should they become applicable (ie freedom of speech). I prefer to think of this as an issue of human dignity - the inherent moral status she has by right of being human, which can only be taken from her. Physically reducing someone, entirely without their consent, is actively changing what little we know of who she is.
This comment was written by Sara.Report this comment to the moderators
January 7th, 2007 at 4:12 pm
Suzanne, I probably wouldn’t have said it that way (uh, a little blunt for my taste!), but I think you’re getting at an important point: “natural” and “consent” are totally moot in the discussion. Ashley cannot eat on her own so far as the descriptions tell; she has a feeding tube. I firmly believe that she deserves and should have that feeding tube, but there is nothing natural about a feeding tube, as you point out. She also, under no circumstances, consented to that feeding tube. There are various kinds of feeding tubes out there, some of which can be placed without surgical intervention (like the kind which go down your nose), but from the pictures she doesn’t have that kind because it would be visible in any photo including her face. In other words, she has already had some kind of surgery, likely one that cut into her belly. She didn’t ask for it or sign for it; it was done to her. Keep that in mind when speaking of the rest of these things she didn’t sign for. None of these things are natural; none of these things are done with her consent. That’s the nature of what’s going on here, every day of her life. Without it, she doesn’t get to keep living. That doesn’t mean that every decision is right, but getting on the bandwagon of her “natural” height and her “consent” is just kind of strange to me too.
This comment was written by skylanda.Report this comment to the moderators
January 7th, 2007 at 4:20 pm
Oops, just re-read my previous post and should clarify: what I meant when I said that without intervention Ashley wouldn’t go on living, I did of course mean things like the feeding tube and such - not the surgeries recently done here. I realize that might sound ambiguous and don’t mean it that way. I was just trying to get at the idea when we equate natural with good, we pretty much nix many disabled people right out of the picture (like Ashley - remove that unnatural feeding tube, and she’s gone, ya know?). I often agree with the idea of altering the surroundings rather than the disabled body to accomodate the impairment of a disabled individual, but I do also sometimes think people are denying the natural limits of what assistance and technology can do. Given all the hoyer lifts and unlimited, competent care in the world, I still think that a 90-pound person who cannot move on their own is going to be less prone to pressure sores and pneumonia than a 250-pound person in the exact same situation. I’m not sure there’s the data out there to prove or disprove my assertion there…maybe my afternoon project will be to see if I can’t find any primary literature on the subject.
This comment was written by skylanda.Report this comment to the moderators
January 7th, 2007 at 4:21 pm
And back to Ashley. What’s better for her? To be able to be carried around and participate in her family’s life (carried from bed to living room, to family room, maybe outside, to friends’ houses, on vacations, etc.) … Or to be dependent on a Hoyer lift and not moved as frequently, thus increasing the chances of some pretty serious things (bedsores, bone fractures, etc.) as well as decreasing her quality of life? All because people not even involved with her care think it’s more important that she be 5′6″ instead of 4′6″ because it’s “natural”? Well, Ashley’s “natural” state is dead, so screw natural.
The bolded part is, I think, the most important and relevant statement on the entire thread.
This comment was written by me.Report this comment to the moderators
January 7th, 2007 at 4:28 pm
PS - When I say that her dignity can only be taken from her, I mean that she cannot give it away, and neither can anyone else.
This comment was written by Sara.Report this comment to the moderators
January 7th, 2007 at 8:14 pm
For some better-informed (and, all-around better) perspective on the dignity and integrity of the disabled body, see also this post by ballastexistenz, an autistic woman with a hell of an axe to grind. Good conversations are shaping up atAlas, A Blog and Woman of Color Blog.
This comment was written by F-Words.Report this comment to the moderators
January 7th, 2007 at 9:46 pm
Everyone’s natural state is dead, if you take away artificial assistance.
This comment was written by Ballastexistenz.Report this comment to the moderators
January 7th, 2007 at 11:36 pm
Everyone’s natural state is dead, if you take away artificial assistance.
Eh? Pretty sure not, unless you define air, rain and plants as artificial.
There is, admittedly, a continuum of the amount of labor it takes to keep a person alive - and the more advanced a society and economy are, the more of that work is done by other people. But there are nonetheless clear inflection points on that continuum.
This comment was written by Robert.Report this comment to the moderators
January 8th, 2007 at 4:27 am
There are already a number of significant posts on disability related blogs having to do with this story and I want to suggest that readers of this site explore what many disability bloggers are saying about this matter. Alas, a Blog is a good place to start. And Blue, of The Gimp Parade had this to say in her post Frozen Girl. I’m under the impression she’ll write more when she’s feeling better. Feel better Blue. (Here is another post, ‘here
This comment was written by Planet of the Blind.Report this comment to the moderators
January 8th, 2007 at 7:38 am
Very few people — if anyone — survive on just “air, rain, and plants” without the use of any tools whatsoever. I find a natural/artificial distinction with regards to human technology untenable anyway, though.
This comment was written by Ballastexistenz.Report this comment to the moderators
January 8th, 2007 at 7:49 am
>>prefer to think of this as an issue of human dignity - the inherent moral status she has by right of being human, which can only be taken from her. Physically reducing someone, entirely without their consent, is actively changing what little we know of who she is. >>
Everything done to her is done without her consent, though. Ashley didn’t consent to her feeding tube. She doesn’t consent to when her mother wheels her out to the park for fresh air or puts her in front of the television or takes her to grandma’s house or takes her to the doctor’s office. “Because she didn’t consent” is a non-issue. She hasn’t and she won’t ever. And if consent is the issue - well, she couldn’t consent to birth control or Advil given through a G-tube, or a tubal ligation either.
Let’s play it the other way. Suppose in addition to her ailments, she had a growth condition such that she’d reach 7 feet and 300 pounds by the age of 16. And her parents wanted to limit it such that she’d only reach a normal adult height and weight, let’s say 5′6″ and 130 pounds for the sake of argument. Would that be an insult to her dignity because you’d be growth-reducing her without her consent?
Or, what if she just didn’t develop and was always going to have the body of a child. And a doctor offered her parents growth stimulation to get her to the 5′6.” You’d be all yelling that the parents had “issues” for insisting that she be 5′6″ when there’s, indeed, nothing wrong with being a 4′6″ person, as the community of little people will attest to.
This comment was written by Suzanne.Report this comment to the moderators
January 8th, 2007 at 7:55 am
Ballasexistenz, if you are unable to go out into a street without putting yourself in danger, or others in danger (because you can’t perceive the danger of cars, because you are fascinated by the lines, etc.), would you believe that you bear any responsibility if a traffic accident happened as a result?
This comment was written by Suzanne.Report this comment to the moderators
January 8th, 2007 at 8:13 am
Suzanne, you should check out, if you can, the original academic articles that came out about this case. They are online but not accessible unless you either have access to an academic library or want to pay for them, but they discuss in depth the origin of the growth-stunting treatment for girls (it was used several decades back on white, middle-class girls of tall parents to ensure that they would not end up with height that would hinder their marriage prospects), and they point out the irony of how there’s so much less ethical hooey when potentially short boys get interventions (eg. growth hormone, etc) to keep them from being that way - even though the same basic bias underlies both actions: girls must be short, boys must be tall, lest our heteronormative expectations of aesthetic coupledom be threatened.
I also question the assertion that her “natural” height would be 5′6″. If she was showing signs of premature puberty at age 6, it’s entirely likely that her bone plates were going to fuse long before she reached the height projected by her parents height anyhow. “Natural” is a pretty artificial claim for just about any of us in the room as Ballastexistence and others have asserted.
This comment was written by skylanda.Report this comment to the moderators
January 8th, 2007 at 8:16 am
Very few people — if anyone — survive on just “air, rain, and plants” without the use of any tools whatsoever.
Indeed. But some of us could (with varying degrees of discomfort), while others would die immediately unless fed. So “the natural state of all of us is dead” isn’t true; the natural state of some of us is dead. There is a continuum of capability.
I suppose that’s dreadfully ableist of me to say/think, but I’ll be comforted by its connection to reality.
This comment was written by Robert.Report this comment to the moderators
January 8th, 2007 at 8:31 am
Robert, everyone requires assistance — of other humans, at least — to survive. The only variable is in the timeline; some people could in theory survive independently for part of their life, but no one could survive independently for their entire life.
Skylanda wrote:
I agree that it’s an artificial claim. However, the argument that there is an intrinsically preferable natural state for Ashley’s body, and any deviation from this natural state is a horrible insult to Ashley’s human rights, is contrary to the claim that “‘natural’ is a pretty artificial claim.”
This comment was written by Ampersand.Report this comment to the moderators
January 8th, 2007 at 8:42 am
Amp, obviously there are lifecycle considerations. Everybody is helpless at birth; most of us are helpless at the end of our lives; many to most of us are likely to be helpless at some point in between due to illness or accident. These necessary interdependencies probably led us to discover the efficiencies of cooperation and to make interdependence a daily fact of ordinary existence; life is better when we can count on one another.
But if you drop Ashley in the woods alone right now, she’ll be dead by Friday. If you drop me alone in the woods right now, I’ll probably be just fine. (Although I’m going to be pissed at you for dropping me off in the woods; I have shit to do this week.) That’s not a distinction without a difference; there are variations in our ability to care for ourselves.
This comment was written by Robert.Report this comment to the moderators
January 8th, 2007 at 8:55 am
>>I agree that it’s an artificial claim. However, the argument that there is an intrinsically preferable natural state for Ashley’s body, and any deviation from this natural state is a horrible insult to Ashley’s human rights, is contrary to the claim that “‘natural’ is a pretty artificial claim.” >>
Exactly. Going on and on about how it’s preferable for her to be “natural” is pointless when there’s nothing natural about her situation as is. And so therefore, decisions need to be made in light of what facilitates the best care for Ashley, not “how should her body be kept most naturally.
I think the growth attenuation, hysterectomy and breast bud removal are perfectly valid ways of ensuring that she gets better care and significantly higher quality of life, and it says something ab0ut the odd priorities of people here that they place a foot of height, breasts and menstruation above Ashley herself. I’m disappointed in Amp’s readers - I expected better.
This comment was written by Suzanne.Report this comment to the moderators
January 8th, 2007 at 9:56 am
I’m more worried about the fact that a bunch of people think a whole lot of highly ableist/medicalistic priorities are automatically what are “best for someone” (because their parents and doctors say so, it must be true!) and then try to couch their problems with people who question the ableism in a “feminist” way, like “why do you care so much about boobs and stuff?” basically.
This comment was written by Ballastexistenz.Report this comment to the moderators
January 8th, 2007 at 10:19 am
I don’t think that the procedures are what’s best for people, ballastexistenz, so much as I think that the parents and the doctors are the appropriate locus for the decision when the disabled person in question is unable to articulate (or have) a preference.
The idea that activists or other people with similar conditions should have a vote is ludicrous. I have medical conditions which are slightly disabling now and which could become hugely disabling in the future; the opinions of other people with the same condition, or activists claiming to speak for all of us, are of tertiary significance at best. I decide; if I can’t decide, my wife decides; if I have no spouse, then my parents decide, and so on. Unrelated nosy strangers never enter the chain of command.
Activism certainly has a valuable place - and that place is raising awareness, creating information and attempting to persuade the actual decisionmakers of the wisdom of a particular approach or view.
This comment was written by Robert.Report this comment to the moderators
January 8th, 2007 at 10:54 am
As opposed to, “Because a group of total strangers with a political axe to grind disagree and diagnose Ashley’s condition based on photographs, so it must be true”?
Yeah, I’ll take the opinion of the parents, the doctors, and a medical ethics board, thanks.
This comment was written by Myca.Report this comment to the moderators
January 8th, 2007 at 11:08 am
Suzanne, the fact that she can’t consent is absolutely a central ethical concern. This is elective surgery - it’s not treating any current or certain health problem. Her cognitive state does not make her normal body processes - processes women have had to fight tooth and nail with the medical community for recognition as normal, healthy, and valid - pathological. Her parents are in a position where they have to make decisions for her daily, which is a difficult responsibility to bear. That doesn’t mean they have unlimited license to make decisions about Ashley’s body. I do think there is a good chance that she could benefit from her “treatment,” but if it turns out to be a terrible mistake - her parents can’t even apologize, and she can’t ask them to. They shouldn’t permit anyone’s sexual contact with Ashley - because she can’t consent. They shouldn’t pierce her ears - because she can’t consent. These examples, and the surgeries, are impositions on the wholeness and integrity of her body that are a) not necessary and b) of questionable and unknowable value. That clearly crosses the line between necessary imposition and out-and-out violation.
This comment was written by Sara.Report this comment to the moderators
January 8th, 2007 at 12:28 pm
No one I’m aware of is advocating unlimited license.
Obviously, making permanent decisions about the body of someone who might someday disagree with those decisions, or suffer for them, is awful. But not taking steps that would in the wrong run increase her happiness and comfort is also an awful prospect. There is no obviously correct or obviously safe decision.
There was no available decision that was 100% guaranteed to be the best decision. There was no course of action — including inaction — that could not lead to irreversible consequences. So it is illogical to say that one course of action should be condemned because it is not guaranteed and irreversible, when the alternative course of action you favor is also not guaranteed and irreversible.
On the whole - despite the somewhat creepy and offbase stuff about sexuality and rape - the parents make a plausible case that Ashley will be happier and more comfortable having gotten the Ashley treatment. I don’t understand how “the wholeness and integrity of Ashley’s body” has become a more important consideration than Ashley’s happiness and comfort.
This comment was written by Ampersand.Report this comment to the moderators
January 8th, 2007 at 1:37 pm
I’m also curious about the “wholeness and integrity of Ashley’s body” argument, since no one seems to care about the appendectomy that was also performed.
This comment was written by Kaethe.Report this comment to the moderators
January 8th, 2007 at 3:14 pm
Or about the feeding tube, which also required surgery and for which her consent was clearly not obtained.
Why is it so wrong to suggest that in her condition, her uterus is about as useless as her appendix - in best case, will be benign, and in worst case may cause her pain and disease, none of which she can adequately communicate til it’s too late?
Ashley’s a woman (or, I suppose, girl becoming a woman) just like any of the rest of the women on this blog are. Suggesting that her hysterectomy prevents her from fully being a woman is just a small step away from suggesting that women who can’t or don’t bear children aren’t fully women. Do you want to go there?
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January 8th, 2007 at 3:15 pm
Suzanne, the fact that she can’t consent is absolutely a central ethical concern. This is elective surgery - it’s not treating any current or certain health problem. >>
But again - she can’t consent to anything. She can’t consent to when and where she’s fed, she can’t consent to a walk in the park when she’d rather be at home. If the parents waited around until they could figure out her “consent” to everything they did, she’d be dead. They just have to do the best they can with what the cards are they’ve been dealt.
This comment was written by Suzanne.Report this comment to the moderators
January 8th, 2007 at 5:02 pm
“The idea that activists or other people with similar conditions should have a vote is ludicrous.”
I agree and disagree both with this. On one hand, if I become deeply disabled, I trust that my family will do right by me (lucky for me, I do have a family that I can trust here) and will make difficult decisions with my best care in mind (and damnit, they better stop my periods by hook or crook - they cause the most miserable moment of my existence, I have already medically stopped them by conscious choice, and I will come back and haunt from the grave anyone who decides that in order to be a real live comatose woman, I need no brain function but I do need to go back to suffering the week-long monthly evisceration I call my menstrual cycle). No activist of any sort has any business at all taking part in that decision-making process, as others have also asserted above.
At the same time, Ashley’s situation is not happening in a vaccuum and it is not happening to an adult who could make certain wishes known ahead of time (me, for example: if I couldn’t move and could barely think, I’d want a feeding tube and diaper changes and the whole bit, but for fuck’s sake, take my damn uterus out already - it’s already caused me enough trouble; I do understand that many other women do not feel that way, and that’s fine, but I do). And this is why a forty-member ethical board was convened, and why that board should most certainly be partly comprised of some self-identified disability activitists (I do not know if it was, because I don’t think that was disclosed - but in any case, it most certainly should be). Those voices should be at the table, but damn if they should be the only voices - and to be honest, I am very wary of male disability activists speaking to the topic of the menstrual issue in a young girl. You can know everything in the world about honoring bodies that come with impairments, but unless you know something about what it’s like to spend three to five days out of every four weeks with your viscera tied up in knots, you’re not talking with a full deck either. Other voices that need to be there include pain management specialists, home health care case workers, surgeons, the works. There is no one voice that can say what is right for this child; the hospital recognized this and did what best they could (and in a manner that is widely accepted as the reasonable thing to do in ethically sticky cases) to address it from a broad spectrum of perspectives. Quite possibly more disabilities perspectives needed to be on that ethics board, but I can’t really say that because so far as I know, it hasn’t been disclosed who was on that board.
This comment was written by skylanda.Report this comment to the moderators
January 8th, 2007 at 8:41 pm
I found this article highlighting some of the possible dangers of using high estrogen therapy to stunt growth :
Go visitthis site.
Also, this web page contains two articles mainly talking about both the prevalence and complications of hysterectomies :
Go visitthis site.
I would just like to add that I do consider the surgeries done on Ashley to be both risky and unnecessary. I do not think the wishes of the parents should override Ashley’s basic human rights. The parents’ intentions may be good, however, it does not make it right. It has nothing to do with thinking her “less of a woman” or that her body will lack dignity. Ashley is entitled like we all are to have her bodily organs remain intact as it is vital to both her health and well being.
This comment was written by Denise.Ashley should not have to be mutilated just because society has not yet learned to properly care for it’s disabled citizens.
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January 8th, 2007 at 8:57 pm
I found this article which highlights some of the possible dangers of using high dose estrogen to stunt growth :
Go visitthis site.
Also, this web page has two articles mainly talking about both the prevalence and complications of hysterectomies :
Go visitthis site.
I would also just like to add that I do consider the surgeries done on Ashley to be both risky and unnecessary. I do not think the parent’s wishes should override Ashley’s basic human rights. The parent’s intentions may be good, however, it does not make it right.
This comment was written by Denise.It has nothing to do with thinking her less of a woman or that her body will somehow lack dignity. Ashley has a right like we all do to have her bodily organs remain intact as it is vital to her overall health and well being.
Ashley should not have to be mutilated just because society has not yet learned to properly care for it’s disabled citizens.
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January 9th, 2007 at 7:13 am
>>found this article which highlights some of the possible dangers of using high dose estrogen to stunt growth :
Go visitthis site.>>
Good thing you did this, Denise. Certainly none of the 40 people on the ethics committee at the hospital knows anything about growth attenuation, estrogen, hormones, or hysterectomies. Thank goodness the Internets are there to remedy their deficits.
This IS Schiavo-like in that wingnuts were just as ready to do their own google research on PVS and conclude that they knew something that Schiavo’s medical team didn’t.
This comment was written by Suzanne.Report this comment to the moderators
January 9th, 2007 at 12:05 pm
Denise, I’m not particularly impressed by your two cites to estrogen and hysterectomy articles. But there is no possible medical procedure or care protocol that Ashley’s parents could have that would [not] attract disagreement. So, moving beyond arguing the merits of specific procedures, could you explain how her caregivers and medical team are supposed to look after her, maintain her overall health and well being, without ever violating her intact body? Where do you draw the line for someone who cannot make decisions for herself? These are pertinent questions for parents of non-disabled children as well as anyone who will hold medical power of attorney for another adult. If you aren’t going to permit her legal guardians to make the decisions that seem best to them and her medical team, then to whom are you going to give the decision-making power?
I don’t think it’s wrong for society to discuss these issues, and to work towards agreement. I just don’t think it’s possible to reach consensus. In the absence of clear indications that her parents are abusing Ashley, we must, I think, give them the power to make decisions without interference.
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January 9th, 2007 at 12:38 pm
Kaethe,
This comment was written by Denise.I linked those articles because I was becoming somewhat annoyed by comments on this blog and others that give the impression that the procedures performed on Ashley are without risk.
I am not saying that Ashley’s parents should have no right to make ANY decisions for her. However, I do not think DRASTIC measures like growth stunting and hysterectomy should be performed only as a preventative measure. I just think it is going too far and getting dangerously close to going down that slippery slope.
It is possible to properly care for a disabled person who happens to have an adult body. It is done everyday. If Ashley were to have gotten to a point where her care was beyond the capabilities of her family then professional care could be employed. I am not saying that this is easy and we as a society must do more to assist disabled citizens and their families. However, Society must change and Ashley should not have to have her body altered in order to fit society’s shabby treatment of the disabled.
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January 9th, 2007 at 1:20 pm
Got you. But here’s where I have a problem with what I think you’re saying:
The goal of what her parents have done is to prevent her ever reaching that point. As parents who want to care for their child, and keep her full involved in their family, they have taken steps to keep her care within their capabilities.
If Ashley were institutionalized, and the care facility made it a standard practice to stunt the growth of all admitted patients (where applicable), to remove all appendixes, breast tissue, and hysterectomies or orchiectomies, then I would be opposed. I dislike sweeping policies and invasive procedures in general.
But, I don’t see this as Ashley being altered “to fit society’s shabby treatment of the disabled”. I see this as Ashley being altered to fit her parents and her medical team’s best treatment of her.
This comment was written by Kaethe.Report this comment to the moderators
January 9th, 2007 at 2:09 pm
I think Denise and I are both working from a different assumption than many of you - Group homes and other places that care for disabled adults are not necessarily worse than in-home care. In fact, sometimes they are better. Sometimes a LOT better. I’m copy and pasting a portion of myself from the other thread.
One other comment I’d like to address very quickly is the assumption that many people are making that being cared for by her family is naturally the best place for Ashley to be cared for. As I stated above, I worked with adults with developmental disabilities and of the 6 people I worked intensely with, 4 of them had experienced more sexual, emotional and physical abuse than I can ever begin to imagine surviving - all at the hands of their families. One woman had been prostituted by her parents beginning at the age of 9, had been beaten so severly that she had lost most of her hearing and much of her vision. Another man had been tossed into the basement of his home at a young age, and the only contact he had with other people was when someone would bring a tray of food down to him. He was sexually molested by his brother, he had almost no language development since he was basically a ferral child who was given food and water for sustinence. After he finally was removed from the custody of his family - after more than a decade of abuse, he entered various group homes and over time was taught to wash himself, dress himself (though he was blind), eat with utensils, understand language and use signs to communicate his needs/wishes. He loved music, smiled so big it could make your heart melt. With all the individuals I worked with, even the ones whose parents were loving and giving, they benefited greatly from being in a group home. They learned more independence skills, had more opportunities for socialization, etc. I’m not suggesting that Ashley’s parents are abusive toward her - based on the information I have, she’s well cared for and loved, however, it doesn’t mean that her family is the only place she could receive excellent care, nor does it mean that it is automatically the BEST place for her to receive care. Are there problems where individuals with disabilities are taken advantage of by care workers? Absolutely. However the arena of reputable group homes is far more regulated and controlled than family situations. Every case of abuse that I have seen or heard of first hand occurred within the family - not in group homes. This is a false assumption from which many of you are generating your arguments, Ashley is best if cared for by her parents and the treatment she received enables this care. The truth is, I’m not entirely convinced the best care Ashley could receive is automatically with her parents.
This comment was written by Kate L..Report this comment to the moderators
January 9th, 2007 at 4:34 pm
so i see many people agree with this issue… personally i can not say the same. my first reaction when i heard this story was… “wow that sounds similar to the nazi experiments adolph hitler carried out on the disabled.” and then i thought, “hmmm, what they are doing to her is similar to small dogs that have had their growth stunted to make them cuter.” in one article i read they said stunting her growth would “make her more portable…” PORTABLE!? WHAT!? portable is what my radio is… not what a human being should be. although they have said her condition is a life sentence… whos to say that many years down the road with major medical advances, scientists and doctors won’t find a treatment for mental conditions… then what would her parents have to say? “um sorry we stunted your growth cut out your organs, lopped off your breasts? basically you have no gender?” which brings me to another point… the hospitals nowdays along with the government provide caretakers… IN-HOME caretakers to assist you in the proper care of those who need it. and i know for a fact that these parents would be able to afford it because they could afford to have her degenderized and they could afford the hormone treatment which i imagine is pretty costly. so instead of stunting her growth they could hire a caretaker. their actions say to me, “ok our daughter is disabled… so that means, she isnt allowed to grow up and have a normal body.” they say they are doing this for her… but as far as i can tell its truly for their own convenience. My other thought on the matter is… what kind of parents came up with this? and look at it this way… how would you like it if your parents wanted to do that to you… so you are more portable.
This comment was written by me.Report this comment to the moderators
January 9th, 2007 at 4:51 pm
Kaethe,
I guess I am just a whole lot more cynical than you !
From my perspective the parents unnecessarily compromised the overall health of their daughter in order to fit THEIR wants and needs. For instance, I strongly suspect the parents wanted to stunt
her growth to make Ashley’s care easier for THEM. They may feel they are doing what is best for Ashley, too, but personally I just feel they are terribly misguided. They subjected her to risky procedures with unknown long term consequences (Let me add that the effects of a hysterectomy on a nine year body must be much more unknown than when performed on an adult woman). I just don’t think these are rational responses to fears of what MIGHT happen to her in the future and I am very wary of the parent’s desire to keep her childlike. There may indeed have come a time when Ashley would have had to leave her parents and be placed in more suitable care. I know it would be heartbreaking for the parents, but, ultimately it is what is best for Ashley that matters NOT the parents. I , also, don’t think this can be looked at as just an individual case without considering the context of how women and the disabled have been viewed by the Medical establishment.
Kaethe, this is the way I am seeing this whole case and it is making
This comment was written by Denise.my blood boil. Even though I respectfully disagree with your position I appreciate your thoughtful comments.
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January 10th, 2007 at 8:27 pm
Ashley’s treatment or lack thereof
A child, a girl, a human being with a disability that was unnecessarily dissected, mutilated and drugged. Beyond the torture so many women have historically faced, now we add people with disabilities to those we can passively medically torture. Are we really ready to make it an acceptable practice to cut out a child’s uterus, breasts and give her growth stunting hormones simply because she has a disability? This type of apparent travesty cannot exist in such a socially conscience society.
In 1996 the U.S passed a law making the mutilation of female genitalia (FGM) a federal offensive. The UN commission on Human rights condemned FGM along with other Human rights organizations from all over the world. Medical and social professionals have agreed that this mutilation is simply an act against humanity. “Breast Ironing” is another form of cultural mutilation where women’s breasts sustain tissue damage at the hands of their mothers in order to be more attractive to suitors. This is a short list of historical tortures against women that continue to sting and horror the world at large. This type of cultural inhumane treatment against women has long been studied, discussed and made illegal in many counties. Given this very well studied history, why then are we letting this happen to another set of women. How did this happen to a child?
To the medical community and ethics panels that sat and pondered on the appropriateness of this decision; I want to see the documentation and notes that lead you to think in anyway allowing this to happen was at all humane or ethical. I want to hear how you plan to ensure that people with disabilities are not ever again unnecessarily hurt, killed or mutilated now that you have opened the door. I want you to look me in the face and assure me that you understand the larger implications this has for people with disabilities. I want you to shout from the roof tops that giving a parent the right to genetically modify their child because they have a disability is a crime.
To all of you out there reading this that is also a person with a disability, I want to say I am sorry. I am sorry that in our great country our medical community fails you. I am sorry for the parents who underestimate you and society that stifles you. I truly am sorry we live in a country where your quality of life is dependent upon you being a “perfect little pillow angel”
For those of you who care about humanity, women’s rights, rights of persons with disabilities or simply who care anything about making our medical community responsible for any inhumane treatment, please write letters, call your press, join a humanitarian effort, advocate for better services. Just please do something to be heard!!
(A little something I wrote as part of a flood of letters and emails we are sending to the media, hospital and others…)
This comment was written by Sadie.Report this comment to the moderators
January 11th, 2007 at 12:01 pm
on the Ashley Treatment — Another Mom of disabled child responds. Brownfemipower at Women of Color — Lengthy comments. Women’s Space/The Margins — Again, long comment thread. And with huge comment threads, Alas, A Blog: Here and here. Did I miss someone? Add the link in comments. Updated: Sharon at The Voyage writes here and here. Elmindreda of Random Reminiscing Ramblings writes “Dear Ableist.”
This comment was written by The Gimp Parade.Report this comment to the moderators
January 11th, 2007 at 8:27 pm
Ashley’s parents state that some of the procedures that were conducted on their ‘pillow angel’ are a first of their kind. I beg to differ. In Nazi Germany the ‘disabled’ were rounded up with everyone else that was deemed ‘unacceptable’, thrown into concentration camps, most often sterilized…you know how the story ended for most. Most of OUR countries institutions practiced sterilization for both men and women well into the fourties and fifties. This is not cutting edge technology.
I have worked side by side people who experience disabilities for over 10 years. I spend every day with 40 different, unique, wonderful people, who just happen to have been natually (YES NATURALLY!) born with a disability. 85% of these people do not use words to speak. 50% of them use wheelchairs. By reading through Ashley’s family’s description of her, I spend my time with many people who appear to have less cognition than they ‘deem’ her to have.
Ashley has been robbed. Ethics are a joke in her town. There are many, many other options for the ’struggles’ her family was trying to ‘avoid’. As sophomania suggested, breast reduction if she does grow large breasts. Birth control or the surgury later if she seems unable to handle the pain/discomfort of menses. It’s amazing how many 30+ disabled women I know who cannot speak words or use their bodies who are able to tell me or my staff monthly that they need a little relief. For lifting, let me tell you- there is a whole industry out there with wonderful technology to help anyone do just about anything. There are innumerable options, respectful, selfless options.
Ashley’s disability, if anyone would care to do a bit of research, is actually an entire body/bone/growth stuntor. Ashley may very well have never grown to what her family’s ‘typical’ genetical map would have described. Look at the pictures of her as a young child. She probably would have always been small in stature. Ashley is tube fed also so weight can always been controlled in a healthy manner by this mean (i.e. she won’t ever been eating ding-dongs and snickers).
No one these days gives credit to people who experience disabilities. I keep reading over and over if your not a parent of a person with a SEVERE disability (define that one for me) that you cannot judge. I want to say if you do not KNOW someone with a SERVERE disability or if you do not experience one yourself you cannot judge. The human mind is an amazing machine and when people have one they learn to use it even if it is not in the way we ‘typicals’ expect to see. “they” know, absorb, and process much more than you know.
And there is support out there. I work for an agency that offers wonderful supports. From the day Ashley turned 6 months old, as American citizen, she had rights to be cared for, taught and protected. Don’t like that? Think that’s a drain on society? That’s what America’s about. You don’t turn your back on those that need protection. There are waiting lists, the system is not perfect, but at Ashley’s age she would definitely be off the waiting list now and eligible for curtailed in home supports for her and her family. And this is for the rest of her life.
Where does it end? This atrocity scares the hell out of me. Over my dead body would I EVER let this dehumanization occur to anyone I care for.
This comment was written by lj.Report this comment to the moderators
January 13th, 2007 at 12:59 am
Round of applause for you, lj. I work with people with disabilities, have one myself, and have two children with autism. I cannot understand how somebody, anybody, can sanction medical child abuse under the guise of being in the child’s ‘best interests’.
In Australia not so long ago, a mother with a child with autism smothered her autistic child to death - and was released. To my horror, she was also interviewed on a television show about autism to demonstrate how terrible it is for parents with children with severe disabilities. I googled the topic, and discovered it is far from a rare occurrence - and juries inevitably decide that the parent was pushed to the edge and let them off. The crime is minimised because people with a high level of intellectual or developmental disability obviously have no rights as we understand them. Remember, I am not making off the cuff comments - I DO know how hard it is to cope - but murder is only one step above, say, surgical and hormonal intervention?
How many times have you heard a person say that? That the person ‘has no quality of life’ and ‘would be better off dead’. That, if they do die, it ‘is a blessing’.
A colleague was telling me about a disability awareness training course that she and a blind colleague ran. One of the senior staff of the institution (who fell asleep during the training) commented that, of course, in the wild animals would turn upon and eat and kill any other animal which was maimed injured or deformed. The blind colleague said sweetly, ‘I remember another person who had views like that. His name was Adolf.’
If we sanction this ‘treatment’ as a community, where do we stop? The boy who has chronic urges to masturbate due to his developmental disability may perhaps, as an adult, become a rapist - should we castrate him at age 12? They took out Ashley’s appendix ‘because of the risk of appendicitis’ and removed her breasts ‘because of discomfort and possible risk of sexual assault by care workers’…should we remove the ears of deaf people in case of possible infections? After all, they don’t need them. The eyes of blind people in case of conjunctivitis? Ridiculous, you say…but that is because we are comparing people who have a functional developmental level as opposed to someone with a disability. And that, my friends, is what discrimination is about. And to imply somehow that a person with a disability is not entitled to dignity because they may not understand the concept is grossly dehumanising.
In the Australian Aboriginal language, there is no word for disability.
This comment was written by Sam.Report this comment to the moderators
January 13th, 2007 at 10:14 am
Kudos to you lj and Sam– As I stated eariler, I have had the pleasure and honor to serve and care individuals just like Ashley for the past 15 years as a nurse as well as having a child who is autistic.
This comment was written by Maureen.I have been following this blog for a week and I am still am amazed at the vast majority of individuals writing who have no personal knowledge or experience working with individuals with ID/DD whose assertions and opinions are based on some academic/textbook exercise. To all of you that have commented without first hand experience, like her parents or those who are personally affected by what I choose to refer to as a “differing ability”, you are entitled to your point of view but how about putting some action behind those highy intellectualized opinions & comments.
My agencies along with many similar agencies across the US and families need assistance and instead of spending precious time blogging & BSing go and get some true understand of what you are taking about.
Suzanne– I stand by my initial comment that the medical interventions utilized were “used for caregiver convience”. There is no need to sugar coat it as anything else. They wanted to stunt her growth so that she would be easier to move— Again, I am stunned that the medical community condoned it but not surprised.
With all the assistive technology today, this intervention was a poor excuse to mutilate her body. One last question—Who will take care of Ashley when her parents are too old themselves to care for her or let’s say when they have passed on?? They will no longer be transfering her and providing hands on care. Will it be her siblings??? From my professional experience, I doubt it as they will be grown with children and lives of there own—- So my point is that for the blip in time that the parents will be primary caregivers this was done.
Last time I check the US Consitution guareentees the “right to life, liberty and the pursuit of happiness” to all citizens, able body or not
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January 13th, 2007 at 2:09 pm
i am a teenage girl, and menstrastion bothers me enough, and i don’t have severe disabilities. and, breasts are bothersome. it’s a fact!
these parents did what they did for their daughter out of love. she will never have the mental facilities of anything over a child of 6 months or so. what would her periods do to her?
scare her! they scare me enough!
her life will be better this way. a 6 month old has no need for breasts, and they would be uncomfortable. and bleeding every month would shock her. she is comfortably cared for in the life she has now.
i think anyone who visits the parent’s blog should realize that. if not, you don’t understand what “rights” are. it’s not about everyone being equal. because we can’t all survive the same as each other.
i need prozac. maybe you don’t.
ashley needs to be small so she can be cared for.
other women, no, they don’t need that.
use your brains and your heart, and you will see they did the best they could.
or be judgemental and continue on.
“The care of human life and happiness, and not their destruction, is the first and only object of good government.”
This comment was written by chelle.-Thomas Jefferson
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January 13th, 2007 at 2:45 pm
Thanks for the kudos Sam and Maureen and thanks and blessings be to you to. I have a typical son and will never be able to say “I know what you’re going through” “I understand” when talking to a parent of a person who has been medically/socially/psychologically deemed a label. But I also know so many people that are without families because they were abandoned because there WEREN’T typical. As I carried my son, not knowing what was in store for my husband and I, I remember being at work and being brought to tears at how happy I would be if I would have been given Missy or Roonie (names changed) as my child.
It terms of labels we unfortunately do spend more time talking about the people we support, love and care for than talking to each of them sometimes. Maureen I applaud you for your conscience to language (i.e. differing ability). I teach this to my employees and the COMMUNITY!!!!! everyday. My favorite quote is from George Orwell in regards to this manner-”If thought can corrupt language. Language can corrupt thought.”
Lines are being crossed everyday across this country and I feel it is time for a social revolution. The word ‘retard’ is tossed around as friviously as another infamous word was that helped incite a social movement back in the 1960’s. Families can chop their children up and it take 2+ YEARS FOR US KNOW ABOUT IT? It is time for each of us who know better to stand up and say enough is enough. It’s time to make our politicians aware of the contributions people who experience disabilities give to our society. At every level scream out the atrocities. If someone you love who experiences a disability is mistreated SPEAK OUT. If you love someone with a disability or know someone or realize that ‘disability’ can happen to any of us at almost any time (stroke, car accident, tramatic brain injury, poisoning, etc.) don’t let this trend of dehumanization continue to happen. Individuals who depend on state and federal funding have benefits cut everyday. It’s horrendous. People with severe mental illness who need medication to be safe for themselves and the society (’locked up’ or not) had most of the most used psychotropic meds cut from their medicaid/medicare coverage plans last year. Educate yourselves. Speak up!!!!! I fear for the future, society has allowed human rights to fall back 50 years.
I know parents that are in this for the long haul who ‘deal’ with much more extraordinary life situations than Ashley’s parents are going through
This comment was written by lj.Report this comment to the moderators
January 13th, 2007 at 9:10 pm
As a mother of a severly dissabled daughter 11 years old I am interested in this
a great deal. I recently have had to get home health care to come to my home because my daughter is about a foot shorter than myself and it’s hard to carry/ lift her. My life has been invaded and restricted because I can no longer just get up and go with my little girl anymore.
Also I have been fearing the onset of menstration since she was five. She has been pre-puberty (developed early) since 5 and I was warned by her doctors that her seizures will most likely get worse and sadly her brain may not be able to handle the change and it could be the cause of her death.
Not to mention as she gets heavier she will suffer bed soars and skin breakdown.
Causing bacteria infections and hospitalizations. I feel these parents are doing
something wonderful for there daughter and I only wish I hear about it sooner.
The things I did with my lil’ angel when she was tiny (like 5 years old)
We went EVERYWERE. Camping, vacations it was possible. Now it’s sad and painful. 8(
We should do what is right for individuals, ‘feminists’ group women together and we are all different. One set of rules don’t fit us all !
The ‘poster boy’ for cp that Nancy Grace had on her show was a very Poor comarison to a child like Ashley or my daughter. It quite frankly made me ill.
This comment was written by Kimberly Anderson.Report this comment to the moderators
January 13th, 2007 at 11:47 pm
The ‘poster boy’ for cp that Nancy Grace had on her show was a very Poor comarison to a child like Ashley or my daughter. It quite frankly made me ill.
With respect to your personal experiences, I don’t think Lawrence Carter-Long was supposed to be stand-in for Ashley. He was meant to provide an alternative perspective from the “experts” that dictate so much of disabled people’s (and their parents’) lives. While he may not have spoken for you, an alternative voice to people whose professional careers support the Ashley Treatment, and vice versa, was surely needed.
Also, I suspect he didn’t appreciate the unexamined reference to “poster boy” much either. It’s pretty derivative. Not much different than “pillow angel,” really.
This comment was written by Blue.Report this comment to the moderators
January 14th, 2007 at 7:36 am
Medically speaking, I think that advances in surgical procedures and the doors that they can open require us to find a balance between what is necessary for health and/or lifestyle improvement, and what is completely elective. There are many pros and many cons to this issue and it is clear that there simply is no correct choice.
I feel that Ashley’s parents made a good choice in having her undergo a hysterectomy due to the fact that she will not be having children and because menstruation is an uncomfortable nuisance. I also think that inhibiting her height (and therefore weight) will be benefitial to her quality of life as well as her family’s. I realize that neither of these procedures is necessary for health reasons, but it seems that each is necessary for Ashley and her family to maintain the best quality of life possible at this time. Women undergo hysterectomies every day and go on to lead perfectly happy, femenine lives. As to the inhibition of her height, it is clear that this will allow Ashley’s parents and caregivers to give her the best life she can have. It will be easier to move her around and allow her to be present during family activities. She is not in a vegetative state, she is the mental equivalent to a three month old baby. As such, she needs just as much stimulation, visual or otherwise, as any other three month old. Her current size will make this more possible.
Now for the mastectomy… While the procedure Ashley underwent is not as invasive as a traditional mastectomy, I do not believe it was at all necessary, and I think the results will be only marginally beneficial to her. Sure, she could develop breast cancer just like any other woman, but women who are finished having children or who don’t plan to have children don’t go and lop off their breasts at their first chance because of the possiblity of breast cancer. Furthermore, I think her parents’ notion to desexualize Ashley for the purpose of avoiding possible sexual predators is rediculous. Breasts do not cause or encourage rape or molestation because those crimes are not motivated by sex itself. Plain and simple: If someone is disturbed enough to molest a person in Ashley’s condition, he or she is going to do it whether or not she has breasts. I suppose that if Ashley were to develop large breasts (as her parents predict) they could cause slight discomfort here and there but certainly not pain. She is going to be laying down on her back or side, not jogging braless. Could this surgery have been an attempt to keep her overall appearance as juvenile as possible to match her height?
In conclusion, I think Ashley’s parents have good reasons for doing what they have done. While it’s definitely unnatural, I think they’ve made a good decision. (all of this with the exception of the breast surgery)… I don’t agree with that procedure in this case, but then, maybe it isn’t for me to say.
This comment was written by Stephie2210.Report this comment to the moderators
January 14th, 2007 at 9:24 am
Ms. Anderson- My heart goes out to you and your family. I DO understand the tough choices you are faced with day in and day out as I share your experiences as a mother of a child with autism and a professional nurse caring for individuals with ID/DD.
This comment was written by Maureen.I just get so frustrated hearing about doctors who say that seizures will get worse in puberty– sometimes they do, sometimes they don’t– they actually get better controlled, before and after puberty people go through periods of poor seizure control– unfortunately that is the inevitiable course of epiliesy.
I am currently caring for a number of people who doctors predicted due to their seizure disorder and other medical concerns; that they would not make it past their 20’s –they are now in their 40s, 50 s& 60s and yes enjoying their lives and families. Going on vacations ( Disney World, Cruises, beach resorts) with their peers in the homes they reside and also with their families with staff assistance. I am not talking just about ambulatory people, I am also speaking about people whose experiences include spastic quadraplegia in large tilt and space custom molded wheelchairs.
Doctors are not wizards with crystal balls that can accurately predict and it is unfortunate that they paint such bleak pictures, not that caring for a child with difficulties isn’t hard enough.
I also am frustrated with the misundertandings and mis information regarding pressure sores– In my 15 years of experience of caring for adults and children similar to your daughter, I have only seen a handful of individuals get small stage 1 pressure sores (skin still intact area reddened) after a hospital stay. Otherwise, with proper positioning both in and out of wheelchairs there should never be a chance for a pressure ulcer/sore to occur. Pressure sores come from poor care ( not re-positioning frequently, poor personal hygiene, infrequent diaper changes, poor nutrition, etc) not from someones size and weight.
I know families want and need to keep their children with them for as long as possible, however it realistically becames increasingly more difficult as they age. Due to cut backs in funding on both the state and federal levels, it is increasingly more difficult for agencies providing services to these individuals to develop new homes and programs so families can feel safe. I have been fortunate in my 15 year career to work with a number of wonderful agencies and the people that work from them from the maintance dept to direct care worker to the Boards of Directors and everyone in between who put the care of the individuals and their families first. I’m not trying to say it is a perfect world but there is a world of resources and support.
My wish is that all families could have the neccessary funding resources available to keep their loved one home and receive the amount of needed care available so that the “Ashley Treatment” would never have been considered. As a medical professional, a mother, an advocate professionally and personal, I am truly troubled by this intervention.
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January 14th, 2007 at 5:28 pm
No one can begin to fathom what this family goes through. I’m glad I did not have to be ridiculed by society, or seek their approval, when I ELECTED to have a hysterectomy and go on hormone therapy. This is a very personal and private decision, for whatever reason, and no one has the right to stand in the way of it.
This comment was written by Loreal.Report this comment to the moderators
January 14th, 2007 at 5:40 pm
First I would like to mention I didn’t title Lawrence Carter-Long as “poster boy for CP” Nancy did and I feel that she (useing him) compaired apples to oranges.
If she wanted to make her point she should of found a parent of a child like Ashley who stands against the treatment. She shouldn’t of said “he knows best what it’s like” no he doesn’t. These children have NO mobility and are 100% completely dependent on others to position them. They can’t speak , they can’t tell you something is soar. He has more motor function and mentality. (God bless him)
My daughter has skin breakdown and is to be moved every twenty minutes. She is VERY clean and WELL taken care of but sadly has very fragile skin. Her mattress moves and her equipment has gel padding to the hilt. This doesn’t always stop the skin from breaking down.
I truely don’t believe anyone can judge this family unless they lived it and can honestly say it wouldn’t of made things better for their child as well as their family.
This comment was written by Kimberly Anderson.Report this comment to the moderators
January 14th, 2007 at 6:33 pm
Ms Anderson– I never meant to imply that your daughter or anyone’s child is not being properly cared for. Yes, there are those individual’s that have fragile skin which make their care that much more challenging. However, from my experience the vast majority of individuals do not.
This comment was written by Maureen.Report this comment to the moderators
January 14th, 2007 at 6:48 pm
Maureen, I wrote that to let you know some have very fragile skin. I didn’t think anything of your statement personally. It’s just that even when you take all precations possible things still happen. Skin breakdown being one of them.
This comment was written by Kimberly Anderson.Report this comment to the moderators
January 15th, 2007 at 1:35 am
Departing from the ethical, moral and social issues discussed so thoroughly in the preceding posts, I am baffled as to why these parents would violate Ashley’s and the other two children’s privacy by creating a website with photos of her face.
They are just about guaranteeing that some mean spirited acquaintance will “out’” them, resulting in a plague of not so mainstream press, curiosity seekers of the weird and lurid type, and fringe activists (possibly of the violent type) all of whom will have few compunctions about invading their lives. Why expose the other two children (who are too young to give truly informed consent to such a risk) to the potential for such harrassment?
They made their decision and took action in private, and to my way of thinking it should have remained private.
This comment was written by Barb.Report this comment to the moderators
January 15th, 2007 at 3:06 pm
lj, I knew what you meant when you said ‘Families can chop their children up’ - but it was still an unfortunate analogy!
Somebody on another blog (with a higher percentage of articulate and sensible opinions) posted this link. To me, it is the final word on the whole sad, sad story.
http://dreammom.blogspot.com/
This comment was written by Sam.Report this comment to the moderators
January 16th, 2007 at 6:02 am
If doctors and ethicists cannot justify this procedure for the healthy organs of mentally intact girls, then they’ve butchered the healthy organs of a girl ONLY because she is mentally deficient.
If that does not ignite your gag reflex, what does?
This comment was written by Jane Hill.Report this comment to the moderators
January 16th, 2007 at 7:10 am
Have you ever had a child the size of an eleven year old sob and want to be craddled in your arms like an infant? Have you ever changed the (menstral)pad/diaper of a child less than a year old? (both pysically and mentally)
This comment was written by Kimberly Anderson.It amazes me how people who don’t do these things on a daily basis can have
such high and mighty oppinions.
How many people here actually have to take care of a child with Ashley’s function for the rest of their lives ? Not as a nine to five job that you can quit or leave when done. (I admire your work but you do get to leave)
My daughter thinks she is still that infant I can put on my shoulder and pace the floor with all night. She’s not folks. She’s a little over four foot tall and sixty pounds. I can’t give her what she wants and that breaks my heart. We used to ‘dance’ together. She doesn’t understand why we can’t do these things anymore. She doesn’t know she’s almost as tall as mommy.
If a child like Ashley is born with a clif lip and looks disfigured would you be upset because her parents allowed three opperations to make her look ‘normal’ ?
Of course not, cosmetics is looked at as a blessing. Why ? Who does it benefit ?
Not the child, she didn’t know she looked awful to begin with. I’m not compairing the two proceedures but the point. Who are YOU to decide what is and what is NOT okay for someone ealse’s child? Who are you to judge what they need ?
And I’m at the point who cares if it helps the child and the parent. Don’t they deserve a break here and there ? We have babies being left in dumpsters and drowned in tubs, these people want to be able to lift their child and ease her pain. They want to advoid major health risks.
I started to wonder huh, how will I know if my daughter’s apendix is bad ?
She can’t vomit, (due to aspiration) she can’t tell me were it hurts, all I’ll have to go on is crying and a fever (wich will bring seizures) She does that with ear infections and simple colds. I most likely won’t know till it’s too late. That’s scary !
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January 16th, 2007 at 7:30 am
Sam, thank you for the link to dreammom. That was truly the best post I’ve read to date. Absolutely everyone who thinks those of us who think the parents are misguided and the physicians are barbaric please, go read that post. She says it better than anyone I’ve seen.
This comment was written by Kate L..Report this comment to the moderators
January 16th, 2007 at 9:54 am
To Kimberly Anderson:
1) To repair a cleft lip is to repair a deformity. Are you suggesting that a uterus and breasts are a deformity in need of repair? If not, the subject has no point.
2) Have I changed the menstral pad of a child less than a year old? Of course not. Ashley is NOT a year old - she is 9. Her brain may forever be that of an infant, but her body will be as old as the time since her birth. Why, exactly, does changing a daughter’s menstrual pad elicit discomfort simply because she is mentally handicapped? (by the way, you say she is less than a year old physically - that is patently untrue - or we wouldn’t be having this exchange)
3) I can opine (as can you) on what is morally right and wrong. Please tell me if you would applaud removing the uterus and breast tissue from a “normal” child. If not, you’d agree that Ashley’s mental handicap gives us (parents and doctors) the right to remove organs we wouldn’t dream of removing from a “normal” child.
4) Exactly how is it that removing Ashley’s uterus helps Ashley? If removing all possibility of menstrual cramps and uterine cancer is the basis - why not remove the uterus from Ashley’s younger, “normal” sister? Or does the “normal” child deserve painful menstrual cramps and the potential of uterine cancer looming over her head?
5) If the convenience of Ashley’s parents to carry, transfer, snuggle her is impeded by her increasing weight, would you support removing the legs from a 16 year old in Ashley’s condition for the same benefits? Honestly, think about that long and hard. Because if you would not support removing legs that will never work and legs that make mobility much more difficult for the family, as yourself how removing a uterus and breast tissue was more necessary. I would be very interested to understand your moral repugnancy for one over the other.
As for my experiences. I’ll tell you this much. I do not have a handicapped child and heaven help me from ever being faced with such a nightmare. Oh, and it is a nightmare - otherwise, Ashley’s parents would never have dreamed of such a horror for a mentally intact daughter.
It’s a sad state of affairs when mutilating our children for the sake of convenience is anything but disturbing, at the least. But, worse still, the mutilation of Ashley is described by her father as not having been a difficult decision at all. Removing her uterus, breast tissue and pumping her full of artificial hormones to stop her growth was not a difficult decision?!
At the very least, that decision should have been heart-wrenching!
This comment was written by Jane Hill.Report this comment to the moderators
January 16th, 2007 at 10:23 am
Who, other than you, has been using the word “normal” in this context?
The difference, in my view, is that there’s a reasonable expectation that Ashley’s sister will someday be able to make medical decisions for herself, and insofar as it’s practical it is therefore preferable to put off making major medical decisions for her, thus preserving her ability to make those decisions herself someday.
(By the way, I’m not any more horrified by the prospect of cutting legs off, nor any less. )
This comment was written by Ampersand.Report this comment to the moderators
January 16th, 2007 at 10:42 am
Amp, did you read the dreammom link that Sam posted? Go read it, I think it’s important.
This comment was written by Kate L..Report this comment to the moderators
January 16th, 2007 at 10:49 am
Jane,
There are children like Ashley who have gotten their first menstration befor being a year old. I didn’t ask if you changed Ashley’s I asked if you have changed one at all.
Secondly a visual deformality is in no way life thretening is it ? So why risk a child’s life by putting them under anestisia and into an opperation to just simply ‘look’ better ? You can change my words all you want, get back to me when you want to discuss this, not slit my throat.
By the way It’s obvious you don’t have expirence. You lack the respect we show to others.
So don’t think YOU could tell me it’s a nightmare.
It’s heartbreaking, It’s exhausting, and lastly it’s rewarding.
But you wouldn’t know that.
Lastly healthy children grow up and decid if they want children of there own.
This comment was written by Kimberly Anderson.Isn’t that the main function of a uterus ? I don’t think Ashley will be consenting to that any time soon?
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January 16th, 2007 at 11:03 am
Kate, I did read it (and I’ve been reading other posts at the same blog this past week). It was an excellent post, and I thought it made good points.
This comment was written by Ampersand.Report this comment to the moderators
January 16th, 2007 at 11:12 am
Ampersand writes:
“The difference, in my view, is that there’s a reasonable expectation that Ashley’s sister will someday be able to make medical decisions for herself, and insofar as it’s practical it is therefore preferable to put off making major medical decisions for her, thus preserving her ability to make those decisions herself someday.
(By the way, I’m not any more horrified by the prospect of cutting legs off, nor any less. )”
Ampersand, I thought removing healthy organs from our children wasn’t done, at least not without a life/death reason. And who is to say Ashley would ever want her breast tissue and uterus removed, sound mind or not?
But the question remains “how did removing Ashley’s uterus and breast tissue benefit her? And how was that benefit not extended to her “normal” sister? (I use quotes to spare myself the forthcoming requests to define “normal”)
As for your not being more or less horrified at the prospect of removing her legs, I agree - I’d be no more appaled by that. Removing an internal organ vs. a leg is equal. Neither are diseased, needs to be removed and the removal of either in a healthy state seems only supported by the convenience it yields her parents.
This comment was written by Jane Hill.Report this comment to the moderators
January 16th, 2007 at 11:34 am
Jane, I don’t buy your argument about ‘If you wouldn’t do the same thing in this radically different situation, then you shouldn’t do it here.’
Circumstances matter.
I also find it sort of grating how you keep making reference to the parents doing this for their convenience and totally ignore Kimberly’s discussion of how her child has suffered a concrete harm. This is about Ashley’s quality of life, it’s not about her parents convenience.
This comment was written by Myca.Report this comment to the moderators
January 16th, 2007 at 12:01 pm
Kimberly Anderson:
Repairing a visual deformity in a conscious, aware child is extremely critical for their sense of self and more positive experiences throughout their lives. Removing a uterus from a female child serves no purpose whatsoever. But please, enlighten me as to how Ashley benefits and, conversely, how her sister does not.
I have never heard of a female child, mentally disabled or otherwise, who has begun her menstrual cycle at under a year of age. But I’ll leave it open for you to provide some evidence for that. Having said that, how would that make a case for removing a uterus? You don’t address that.
As to my experiences, I think it’s funny how surprised we might all be by the lives and experiences of others on this vast network of anonymity. My experience with handicap is extensive and life-long, but irrelevant. After all, surgeons and ethecists inexperienced with handicapped children formulated opinions and voted for the “Ashley Treatment,” and you certainly didn’t question their ability to do so, based on personal inexperience. At least be consistent.
Furthermore, please note that parents of severely mentally handicapped children feel as I do and even more passionately. So don’t mistake disagreement with inexperience with this subject.
Healthy children do grow up and decide if they want children of their own. If Ashley’s inability to make that decision grants us the right to remove the necessary organs, why not remove the legs she will never use? Again, would that be equally acceptable?
As to your own plight, despite our clear disagreement, I do feel very sorry for your circumstances.
As parents, our first instinct is to protect our young. The next is to help them become independent, fulfilled, productive, contributing members of society. Our dream is never a child as Ashley. To say that caring for a child as her is heart-breaking and exhausting is probably a gross understatement that pales in comparison to the reality. And, unfortunately, the rewards are never grand or often enough to accomplish a sliver of what we’d hoped for them when they were but a twinkle in their daddy’s eyes.
This comment was written by Jane Hill.Report this comment to the moderators
January 16th, 2007 at 12:14 pm
If Ashley’s inability to make that decision grants us the right to remove the necessary organs, why not remove the legs she will never use? Again, would that be equally acceptable?
Well, first off, “us” don’t have any rights in the situation. Her parents have the right. You and I have the right to be nosy and run our mouths; we’re completely outside the decision loop, which is where we belong.
And to answer your question, if removing her legs would make a substantial contribution to her quality of life, then yes, that would be equally acceptable.
This comment was written by Robert.Report this comment to the moderators
January 16th, 2007 at 12:23 pm
Myca, very sorry you find me “grating” simply because you disagree with my opinion.
And since you take exception to me not agreeing any of this was for Ashley’s “quality of life,” please illustrate to me how the removal of a uterus and breast tissue in a female child improves their quality of life. Or haven’t you bothered to read my own posts?
Granted, developing breasts and having a menstrual cycle can be irritating at times but so are teeth. Ever have a nasty toothache? Oh, gosh, ever stub your toe? I’ve writhed in pain, squeezing a “baby toe” more than a few times. But is the answer to have my teeth pulled? Is the answer to amputate my feet?
What you don’t seem to address here is that Ashley doesn’t need various organs and body parts based on the SAME EXACT PRINCIPLE used to remove her uterus and breast tissue. So why not yank her teeth out to avoid future dental infections? Why not amputate her legs so her weight is more manageable and her body easier to move around?
How do you pick and choose which body parts are “okay” for removal and which aren’t? If you don’t support removing her legs for “quality of life” improvement, how are her breasts less useful? For the purposes they’re intended, Ashley has use for neither.
I think it’s curious that the same people who support the Ashley Treatment would never support the amputation of her legs on the same principles. And I think I know why. It’s easier to ignore what was done to her when you cannot see it, when you need not bear witness to an atrocity - when you can simply feign ignorance. You can’t see her uterus and you just imagine her a very small breasted woman, as millions of others are naturally. But if you had to FACE the maiming of an innocent human being, if you had to look at what a scalpel did - you would feel uncomfortable. Then, you couldn’t agree with it.
I’m honest enough to say, stop right there! I cannot agree with needlessly lopping off body parts from mentally handicapped children because it makes their parents lives easier. And until someone can demonstrate how this has “improved” Ashley’s “quality of life” (including why her younger sister isn’t worthy of such “improvement”), I will remain firm that it was mutilation for the sake of convenience - and nothing else.
You, on the other hand, can rationalize an atrocity however you please.
This comment was written by Jane Hill.Report this comment to the moderators
January 16th, 2007 at 1:54 pm
Kathryn writes
“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?”
Kathryn, no “thought experiment” need be done. This exists. People with Primordial Dwarfism experience just this reality - bodies smaller than toddlers with intellect that advances normally with age.
I don’t happen to find them repulsive in the least. Similarly I don’t find a grown woman with a mental disability disturbing. Why is the perception of handicapped people as physically whole entities so troublesome to some people?
Painfully telling is the earlier quote from George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies, “The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”
An ethics expert believes Ashley developing into a “full-grown and fertile woman” is grotesque.
I’m feeling quite a bit of that sentiment right here on this board, not outwardly voiced but clearly evident.
This comment was written by Jane Hill.Report this comment to the moderators
January 16th, 2007 at 2:57 pm
I actually thought about whether it would be okay to remove her legs when I was trying to form my initial opinion on the matter. I would want the same information about her legs as I would her uterus:
1) Does the procedure provide Ashley a substantial benefit which can not be acheived in another reasonable way?
2) Does the procedure’s benefit outweigh the pain and confusion of the procedure itself?
3) Does Ashley herself, not an abstract of Ashley, gain pleasures that would be abbregated by the procedure?
4) Are there detriments to the procedure which have not been listed, and what are they?
Without knowing everything about the situation, Without knowing more about the situation, I couldn’t know the answers to these questions. But based on guesswork, I’d believe the test fails, mostly because I’d assume Ashley knows she has legs. (also because of phantom pain, the pleasure of flailing assuming she can flail, etc.)
**
Personally, I find myself mostly persuaded by Ballastexistenz’s remark that medical diagnostics are not currently good enough to guarantee that Ashley is as infant-like as has been assumed. I’d want more information, but if misdiagnosis is a rare but not unheard of problem (on the level of lightning strikes or more common, but not on the level of virgin births), then certainly I would prefer to extend the benefit of the doubt.
This comment was written by mandolin.Report this comment to the moderators
January 16th, 2007 at 4:13 pm
Jane
If a child like Ashley is born with a clif lip and looks disfigured would you be upset because her parents allowed three opperations to make her look ‘normal’ ?
Of course not, cosmetics is looked at as a blessing. Why ? Who does it benefit ?
Not the child, she didn’t know she looked awful to begin with. I’m not compairing the two proceedures but the point. Who are YOU to decide what is and what is NOT okay for someone ealse’s child?
Again you miss quote me , I didn’t say on an aware child ….
Removing a uterus from a female child serves no purpose whatsoever. But please, enlighten me as to how Ashley benefits and, conversely, how her sister does not.
If I must enlighten you …..
Do you know the statis of Ashley’s seizure control?
Are you saying her ‘normal’ (as if Ashley is abnormal) sister has seizures???
I wasn’t aware. However some children suffer a dangerous spike in seizure activity dureing their menstral cycle. So some believe that removing the uterus
there by eliminating menstration would serve a wonderful purpose.
Now if her ‘normal’ sister wants hers removed to stop the seizures she doesn’t have then I guess that poor child will need years of theropy because her parents deprived her attention growing up.
I do know of an 18 month old whom started menstration, Her parents chose Depo to stop her cycle. Should they get your written concent or would you like to pick apart their rights to make medical decisions for their minor child too?
My consistancy remains with the parents NOT the ethics commity or board. I feel parents have the right to make medical decision for their minor children as long as it’s not endangering or shortening their life. I don’t believe you or I should have the right to belittle them for it.
Furthermore, please note that parents of severely mentally handicapped children feel as I do and even more passionately. So don’t mistake disagreement with inexperience with this subject.
I haven’t mistaken anything really, I don’t question your expirence but the manor in which you represent yourself. Most parents I know who have severly dissabled children are aware or others feelings and wouldn’t want to intentionally be rude or hurtful to prove a point. You seem to me like aprofessional of some sort all the knowledge without that pesky touchy feely stuff. But I’ve been wrong befor.
As for removing her legs, are her arterys clogged ? Does she have gangreen? (spelling?) That’s a little over the top and kinda goes with what I was saying above.
I can’t imagine people feeling bad for me. My life is hard, isn’t yours ? My daughter gave me a gift most mothers (people) never get. I can’t explain it, My other children are appreciated so much more because I know the truth. I know that it doesn’t matter boy/girl, blond/brunett, blue/green eyes. Who cares…
This comment was written by Kimberly Anderson.Walking, talking, seeing, eating, these things are what it’s all about.
Everybody has a tough life, it’s how you deal with it that matters.
And if you can find a legal, safe, and acceptable way to make it better for yourself or your family then go for it. You deserve it. And IMO so do Ashley and her parents.
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January 16th, 2007 at 4:51 pm
My understanding of cleft palate surgery is that it repairs a malformation in the mouth that prevents babies from forming suction so they can nurse. Many die of starvation without this.
This comment was written by Blue.Report this comment to the moderators
January 16th, 2007 at 7:06 pm
Kimberly,
Removing Ashley’s legs is NOT over-the-top. See, you just don’t get it, do you? It’s equally radical. Ashley doesn’t need her healthy uterus any more than she needs her healthy legs. A “quality of life” case can be made for the removal of either.
You continue to raise the cleft lip topic, then quickly disclaim that it’s not a comparison. Why raise it? But since you have….no, I don’t think that fixing a cleft lip (and palate as others have raised - they’re usually both deformed simultaneously) - even from a child such as Ashley - is inhumane. For starters, the procedure yields functional benefits as well as cosmetic.
As for me being rude and hurtful, I sure don’t intend on that and can’t see how my opinion of what Ashley’s parents have done to her can possibly hurt you. Then again, perhaps removing body parts from your own child is on your agenda, which would explain why you’re taking my opinion so personally. Otherwise, you shouldn’t.
Ironically, I believe I’m a champion of the underdog - the person who cannot speak for themselves. I sure don’t like people (even “loving” parents) turning a mentally disabled child into a miniature puppet, devoid of sexual organs, under the guise that it would make her more comfortable. Ashley’s parents have a conflict of interest, given what they claim would be better for Ashley just happens to make their own lives a whole lot easier and more comfortable to deal with.
But I must admit this is all quite personal to me as well. You see Kimberly I, too, may find myself in a nursing home, the victim of a car accident that renders me in a permanent vegetative state, or suffering from Alzheimer’s in my old age. And I’d like to keep all of my healthy organs and limbs while I’m alive.
And, finally, I’d hope I’m not the first person to bring this to your attention but yes, Ashley is abnormal.
This comment was written by Jane Hill.Report this comment to the moderators
January 16th, 2007 at 8:39 pm
*round of applause*
And sorry Kimberley, but if I was a child with an intellectual disability I would rather have Jane as a parent than have you (and Robert) as parents. Good grief.
I have two children with disabilities and I work with people with disabilities in the course of my job. What you are missing, entirely, is that Ashley has *rights*. You can’t believe in human rights and then say ‘oh, except if they have an intellectual disability’ - thats fubar. If you believe in human rights (and perhaps you don’t) you have to believe in rights for all people.
If you don’t understand the concept of basic human rights, google it. Human rights are those basic standards without which people cannot live in dignity. To violate someone’s human rights is to treat that person as though she or he were not a human being. To advocate human rights is to demand that the human dignity of all people be respected.
It is not okay to cut off, or out, healthy body parts. I’m sorry, Robert - you are wrong. Her parents do not have the right to do what they have done. Legally, they apparently do - but within the definition of human rights, and morally, they do not. It is abhorrent and a gross violation of Ashley’s rights as a human being that they would choose to butcher her for the reasons they have cited.
Kimberley, I am hearing what you are writing, but you are wrong, honey. When you wrote this, ‘And I’m at the point who cares if it helps the child and the parent. Don’t they deserve a break here and there ? …
I started to wonder huh, how will I know if my daughter’s apendix is bad ?
She can’t vomit, (due to aspiration) she can’t tell me were it hurts, all I’ll have to go on is crying and a fever (wich will bring seizures) She does that with ear infections and simple colds. I most likely won’t know till it’s too late. That’s scary ! ‘ its a pretty clear indicator of your motivations for writing what you have.
You’re exactly right. It is scary and it is dangerous and it is not any situation that a mother would want to be in. Having a child with a disability can be a thankless, miserable experience on occasion (and sometimes can be the most rewarding experience in the world). The rewards are greater because of how awful the situation often is.
Her parents ‘do deserve a break here and there’. They can access respite services or ask for help from family and friends. What they do not deserve is a break at the expense of the basic human rights of their daughter Ashley, who does not have a voice.
‘And I’m at the point who cares if it helps the child and the parent.’ Have you got to that point out of sheer frustration, tiredness and terror at the prospects of the future for your child and yourself - or from rational reasoning? You know who should care? Everyone. Not just everyone who is disabled, or everyone who has a child with a disability. Not just people with children. Everyone should care.
Why does it matter? Because the medical profession, by agreeing to carry out this atrocity, are tacitly giving their approval to the abolition of human rights for people with disabilities. Because the parents are advocating this injustice as being a valid ‘treatment’ for other children (to alleviate their own guilt? to validate what they have done?) And because if it were to be approved across the board, your child could be removed from your care, or you could die, or another child in your child’s situation could be faced with the prospect of having their own human rights abolished.
By the by, the issue you raise about menstruation in children is not really valid. Any such occurence would be because of a serious hormonal imbalance which would be (and apparently was remedied by your friend) remedied by medical treatment. That is because something has *gone wrong*, and they fixed it. See the difference? We are talking about so called preventative surgery which does not really have any valid basis, on a human who is unable to speak for herself. Where does that stop? Do the parents have the right to kill her? That, too, would ‘alleviate her pain’. And as Jane says, the discussion about removing her legs is equally valid to removing an equally healthy body part, her uterus. There is nothing wrong with her uterus - it does not have gangrene nor do the parents have any medical evidence (genetic testing as opposed to ‘family history of’) that the uterus will become cancerous or diseased.
Legal, safe, acceptable - I have an issue with one of those words, the last one. Acceptable it might be to you, and to Ashley’s parents, and perhaps to Robert. But how do you know that it is acceptable to the most important person in this scenario - Ashley?
This comment was written by Sam.Report this comment to the moderators
January 16th, 2007 at 8:54 pm
Sam-thanks for the link from yesterday- though in regards to your post on 1/15 directed towards me and my comment (i.e. “Families can chop…) I’m not sure what part of my blogs you are referring to. Am I missing something???
This comment was written by lj.Report this comment to the moderators
January 16th, 2007 at 9:11 pm
Sam,
Love your post. What some may not understand here is that I myself don’t take THIS personally, I don’t have a ‘need’ for the services. But maybe a few years ago I would have jumped at the chance to stop my child’s growth. I am at a point were my daughter is grown, I already need home health care to help me. However I feel her life would of benefitted if , at some point I could of stunted her growth.
This comment was written by Kimberly Anderson.My concern is more with when do parents loose their right to make decisions for THEIR child. You say Ashley has human rights, when do you see her interjecting ? Next week, a year, ten years maybe ?? I don’t know her seizure control I don’t know what her endo and neuro have told her parents.
I know what mine have said about puberty and it’s not pretty. My daughter has a chance of dying when it happens. This is a chance I need to take. Depo was offered but I myself had horrific reactions to this drug and chose NOT to take that risk with my child. Should I loose my right to make that choice because she has human rights ? I was once told that her pre puberty could be caused by a tumor in a part of her brain that is inoperable and if I should choose not to do something about it custody could be taken from me and they could prosue it on there own.
So parents are wrong for doing too much, parents are wrong for doing nothing or too little. Who gets to pick and choose ?
I had a board meeting at her school tonight. They wanted to drop music and art and a few pool attendent. Well quite frankly if these services aren’t offered then why in the hell do I have to send her ?!? Because the school board says so.
I will be charged with tuency and she will be ward to the state for not attending a school that offers her NOTHING. She can’t walk, talk, see, or eat. She LOVES music and the pool. I can get PT and OT at home. However I don’t play the guitar (she loves her mp3 player) or have a pool so I need the school for her.
To me it’s not about this specific proceedure alone it’s more on why do we feel we know better for a child we don’t care for on a 24 hour basis. Who are we to decide they are selfish and did it only for the few benefits that they get out of it. I mean really she’s not that small they aren’t keeping her from having children and making her stay 2 foot and 20 pounds forever.
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January 16th, 2007 at 9:33 pm
Sam, thanks for the support (I’ve not gotten much!) ;-)
I think, sadly, Kimberly’s opinion is tainted by the excruciating difficulty of caring for a seriously disabled child. And, look, I can absolutely sympathize with the seemingly insurmountable obstacles the parents of disabled children face every single day, without rest, without fail and with little - if any - help. That’s a reality that’s even more pressing than human rights, no doubt. And much, so much, needs to be done in our society to provide for our disabled citizens. (with the oldest of the baby boomers hitting retirement age, I think we’re going to witness a terrible infrastructure that will harm the lives of millions)
Having said all of that, I can’t help but be so profoundly troubled by the motivations of Ashley’s parents and by their very words.
Ashley’s father describes this having been “an easy decision.” Sam, I assure you that even removing a cancer-ridden uterus from a child is an excruciating decision to have to make. No parent would define it as “easy” - and that’s to save the child’s life.
Our children are human beings, first and foremost - quite distinctly apart from us.
This comment was written by Jane Hill.Report this comment to the moderators
January 16th, 2007 at 9:48 pm
To Ashley’s parents: (should they ever read this thread)
There are actually loving human beings who willingly adopt special needs children with no intention whatsoever on mutilating them for convenience. That simply isn’t an option they’d consider. Making a commitment to Ashley shouldn’t have been contingent upon her weight or normal bodily functions. Perhaps if you put half the energy into a more comfortable home for Ashley that you did in having to convince a panel of physicians, ethicists and lawyers to perform a very controversial treatment - you may have yielded better results.
Finally, if life with a disabled child was so challenging (and I have no doubt it is), you willingly and knowingly compounded those challenges by introducing two more children into your household. Doing so immediately shifted time and financial resources away from the child that needed the most. And, ultimately, you didn’t ask the family to make life easier for Ashley, rather you forced Ashley’s mutilation and physical contortion to form a neater package for you. What more do you take from her if you find yourself with less time, less resources?
This comment was written by Jane Hill.Report this comment to the moderators
January 16th, 2007 at 10:06 pm
Pillow Angel Ethics
The controversy is raging. A large storm is brewing. Those involved with medical ethics and disability rights are taking up the hue and cry over Ashley’s parents controversial decision to medically stunt the grown of their severely handicapped daughter. Time’s issue is just a drop in the bucket. The blogging sites are rife with the controversy.
There is a huge problem. Those who condemn Ashley’s parents haven’t been “there”. They have no idea what parents of handicapped children, every where, have to face, day in and day out with little help and respite. Unfortunately, the needs of the most severely handicapped are unimaginable to any one; except to those of us who have been there, assisting and taking care of the many daily needs of those who are incapable of taking care of themselves.
Taking care of a 20 year old severely disabled young girl who weighs 40 pounds is not as taxing as taking care of a 22 year old severely disable young man who weighs over 200 pounds and needs a special hoist and gurney to meet his needs. The young girl takes about 5 minutes to change her diaper. The young man takes about 20-30 minutes to take care of his diapering needs. The young girl eats specially prepared foods and the young man “eats” with the help of a feeding tube.
Many parents of the severely handicapped take care of their children as long as they are able; sometimes into their late 60’s and 70’s. Sometimes they get respite care - if there are available funds and caring individuals to help. Sometimes extended families will help. Sooner or later, these parents will have to give up custody of their child – to the government. Caring for a disabled person is a tough job; and one that no one appreciates.
Now, as to the various medical procedures that were performed on Ashley….. I’m sure that her parents were very much aware of what they were looking at as Ashley approached her teen years. Quite possibly, they observed other severely handicapped children in Ashley’s school who were going through those difficult years of developmental / hormonal changes. So, did they make the “correct” choice? In their minds, they did what they thought had to be done. I have witnessed other parents agonizing over similar decisions. A decision is made to spare a child of the consequential pain, suffering and confusion that would otherwise happen. (The only disagreement that I have is the removal of Ashley’s breasts. Possibly, the hysterectomy would slow down breast development. For many of my severe female students, this was not a problem. Most were “naturally” flat — which is best for wheel chair support-restraints which do put pressure on this area and which is especially bad for those with very extensive - postures.)
Should you have a “need to know”, have the time and are of the “Good Samaritan” type, please report to the nearest school, nursing home, or respite care facility and volunteer. Care givers are always needed. Our severely handicapped children need your loving care. Most will let you know that you are appreciated – with a smile. Some will not, because they can’t. You may even get to understand what it is like for those who live in a world of pain, without end or hope or even of understanding and being understood…..
Will Stamps
Utah Certified Special Education Teacher
Multiple and Severely Handicapped
(And, uncle of a severely handicapped & responsive 27 year old young woman)
ps
This comment was written by Will Stamps.I’ve glanced at Karen Anderson’s writings. For the most part, she is pretty much “on” top of things and has a grasp of the issues. However, every one has an opinion. And, in this “game”, it is really the opinion of the parents that really matters. Hopefully, they are aware of the other options available.
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January 16th, 2007 at 10:22 pm
“My concern is more with when do parents loose their right to make decisions for THEIR child.”
Every human is a distinct entity from their parents. “THEIR child” does not equal THEIR property. Our children are entrusted to us until they reach an age our society has agreed is minimally sufficient to be emancipated. We are not free to do whatever we think best for them until that time regardless of outcome. There are conditions, and eviscerating them of healthy organs is one of them.
Apparently, the same doesn’t hold true for mentally handicapped individuals. And as the parent of one such person, you ought to be far more concerned at the precedent this sets than I am. Protecting the inalienable human rights of your daughter may serve her well long after you’re not able to.
Something’s really rotten in the state of Denmark (or Seattle, WA)!
This comment was written by Jane Hill.Report this comment to the moderators
January 16th, 2007 at 10:34 pm
Sam wrote:
How do you know that not being carried by her parents as often will be acceptable to Ashley?
How do you know that having to spend more time in a wheelchair (currently being in wheelchairs makes her cry) will be acceptable to Ashley?
How do you know that having menstruation will be acceptable to Ashley?
This comment was written by Ampersand.Report this comment to the moderators
January 16th, 2007 at 10:44 pm
Jane, do you understand that not all mentally disabled people are identical? To talk about “mentally handicapped” as a category here, as if all mentally disabled people are alike, is not useful.
Some people will be able to participate in making their own essential life decisions. Some will not. That distinction — between those who can be expected to someday participate in making their own life decisions, versus those whose decisions will always have to be made by caretakers — is the meaningful one for discussing Ashley’s case. And Ashley falls into the latter category; in all likelihood, she will never be able to meaningfully participate in making her own life decisions.
So your comments — based on the idea that “children are entrusted to us until they reach an age our society has agreed is minimally sufficient to be emancipated” — are not very applicable to Ashley’s case. Ashley will, in all probability, never be able to be emancipated.
This comment was written by Ampersand.Report this comment to the moderators
January 17th, 2007 at 7:03 am
I never stated she doesn’t deserve rights, she can not and will not ever be able to express her wants to the national public. There for the next best person or persons to exicute things for her would be har care takers. What is it with you people ?
This comment was written by Kimberly Anderson.Are you trying to tell me that you know what my daughter wants and needs more than I do. Of course not it’s impossible, I eat, sleep, and breath for my child. I know her favorite things to hear and do. Why because she whispers it to me over breakfast? No but because I live for her. I’m fighting for her rights everyday at her school. I’m fighting for her everyday when medicaid says “no that equipment isn’t needed” Do you know that one bean bag chair specialy made for a person with skin breakdown is $15oo.oo It’s insaine. I’m waiting for the denial letter now.
Then I have to file with DDD then ARC then the katastrophic injury commitee. But do I ever think theese people will approve it …. NO
Because when it comes down to it “it’s just a bean bag chair.” But to my daughter it’s so much more. People don’t get that.
I look at Ashley’s parents like they are me. I get what they did. I get why they did it. My daughter has need that can’t be met because she is getting too big. She has wants that I can’t handle because others ‘know better’ .
And lastly they know what her doctors warned would happen ounce she hit puberty.
Ashley has rights, but sadly she can’t express her wants, isn’t it possible her parents are doing it for her?
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January 17th, 2007 at 7:47 am
Ampersand,
I agree that Ashley’s mental deficiency is such that she will likely never contribute to her care and wishes in any meaningful way.
And, still, she remains a human being. She really does have basic human rights (very much as Sam has covered). The inability of a human being to make decisions for themselves doesn’t automatically grant their parents carte blanche to do whatever wish, as even the most “loving” parents in the world can have some ideas that are rather terrifying as to what constitutes wellness for their child.
And simply because Ashley cannot say menstruation is something she would want, shouldn’t give her parents the right to decide she wouldn’t. The default position, I would have hoped, would be that Ashley would want her body as intact as anyone else’s given all of her choices. And deviating from such basic human normalcy should come only in cases separating life and death.
Under the principles you establish, it would seem fit that parents of children in Ashley’s condition may remove any and all healthy body parts they deem appropriate for their own justifications.
When caregivers are entrusted with mutilation, it’s not going to be a very long leap before you find the same happening in nursing home facilities all around the country - not only to the elderly, but to the thousands of patients in PVS. And you’re saying that’s okay because caregivers know best. I’m saying no one should have the right to remove your natural healthy organs on their assumption that you’d be more “comfortable” without them.
Again, and I can’t stress this enough: We all want our children born with normal bodies and minds. When that fails, we work hard to provide them with an existence as close to that normalcy that we can. In Ashley’s case, that’s been turned upside down.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 8:10 am
Kimberly,
Your endless descriptions of puberty remind me of the movie Carrie and her mother’s character in the film. Such terror! Puberty is something we’ve all been through and trust me on this one - IT’S COMPLETELY NATURAL AND HEALTHY. Our bodies have gone through millions of years of evolution. I think that kind of history might have produced a more finely tuned specimen than you give our bodies credit for. And frankly, I don’t remember anyone going insane with seizures and attacks from puberty (which includes the class of mentally challenged kids in my high school at the time). Maybe we were all more emotional or restless and our pimpled faces might have looked a little worse for the wear but it did pass and our organs needn’t be removed.
If your child developed an extreme hormonal imbalance, then that was her misfortune (and yours) but you really don’t need to assume that on all disabled children without substantiation.
I think you extend all parents a whole lot of freedom to do whatever they wish with their children and I am very very careful to tread that ground. Perhaps Ashley’s parents could have….gee…I dunno, maybe….umm….WAITED to see how Ashley responded to puberty before deciding to take such radical defensive action?!
Kimberly, Ashley may develop tinnitus some day. I personally know of 2 women with that awful, maddening condition. I’ve since learned it’s not all that uncommon. If Ashley’s severe disability warrants her parents to initiate pre-emptive strikes against anything that may one-day trouble Ashley, why not remove her ear drums now so tinnitus won’t strike? Or, why not remove…..
You get where this is going, right? That, at the very least, removing PERFECTLY HEALTHY body parts cannot be sanctioned. And the removal of body parts - yes, even for the handicapped children you seem to deem less worthy than healthy children - should ONLY be performed when life and limb are at stake.
I really feel as though an uncomfortable amount of people wouldn’t mind chopping Ashley down into a genderless torso with a hook in her back so she can go hiking with the family and be mounted on the wall over the fireplace when they’re watching a movie.
C’mon folks! She’s a human being!
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 8:22 am
Will,
I think you’ll agree there are professionals (such as yourself) and parents of children as severely handicapped as Ashley who are enraged over the “Ashley Treatment.” In fact, disabled citizens have come out strong against this and are enraged.
It probably doesn’t mean much, however. There are many points of view that are distributed amongst us all, even those most intimately affected.
My message remains that invasive procedures involving the removal of natural, healthy organs of ANY human being is unconscionable. And you have gone into great description detailing the TRUTH about why the Ashley Treatment was done - for the convenience of Ashley’s parents and nothing else.
If, as a by-product, their convenience was also good for Ashley, then that is called indirect benefit. As I’ve mentioned previously, Ashley’s parents might have considered their lives full enough with a mentally handicapped child, given the inherent drain of time and expense, and not increased their family. Doing so created a far more desperate situation and the Ashley Treatment was created. And whose organs were removed? Ashley’s.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 9:15 am
Jane and Sam,
Thanks for such clear and conceise arguments. I’m so enraged and dumbfounded over the responses of people who purport to be progressive and defenders of human rights that I myself am unable to argue. It’s truly maddening, and every time I think I’ve calmed down enough to make a point I read some more that upsets me all over again. So, I just wanted to say that although I am unable to coherently argue with you, I am reading and clapping for your posts.
To those that say that people without disabled children just don’t know, well go read dreammom and see what she has to say.
This comment was written by Kate L..Report this comment to the moderators
January 17th, 2007 at 9:32 am
You really are a piece of work, Jane Hill, to question Ashley’s parents’ decision to have other children. A true piece of work.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 9:55 am
Puberty is something we’ve all been through and trust me on this one - IT’S COMPLETELY NATURAL AND HEALTHY. Our bodies have gone through millions of years of evolution. I think that kind of history might have produced a more finely tuned specimen than you give our bodies credit for.
I wasn’t aware that all people who hit puberty run the risk of uncontrolled seizures. Forgive my ignorance.
This comment was written by Kimberly Anderson.You want to make this a human rights issue, then find someone whom had this treatment done and is pissed about it. Fight for them. Go find a woman who uterus was removed without consent and wants vindication.
This case is about a child who has no way to express her own wants or needs so her parents out of love and compassion (not gross boredom or curiosity) made these choices for her. It’s done everyday, by millions of parents on different levels and in different ways. Some children on life support are being unplugged today while others are going to be kept alive another day.
Do we slash the parents who unplugged saying they are heartless for giving up ?
Or do we pick at the parent unable to let go because they are selfish ? Parents make hard, heartbreaking desicions every day, without their mino child’s consent. They do it by wondering …. “what would MY child want?” Some would want one thing some the other, everyone is different. In my family everyone wants something different. (we lernt this after the Terri Schiavo fiasco)
I still believe if Ashley’s parents did this they did it because they feel it benefits Ashley. Go figure they indirectly benefited. You can spin that belief both ways.
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January 17th, 2007 at 10:12 am
Jane, Ashley’s parents have lives beyond Ashley and a right to try for a healthy, functional child. Whatever moral obligation her parents have to her, they should not have to forfeit their right to future offspring.
I think the actions taken in the Ashley case benefit the involved more than they harm them (including most particularly Ashley), but I’m very concerned about it all the same. It has brought the option of surgical alteration to the attention of home caregivers, including those whose charges are less incapacitated than Ashley, but no more able to protect themselves.
This comment was written by CJ.Report this comment to the moderators
January 17th, 2007 at 10:29 am
Interestingly enough, the Roman Catholic Church, of whom I am no defender, has always forbidden any sort of surgical intervention which is not intended to benefit the health of the patient. Directly. Not the convenience of other people.
Under the conventional teaching of that Church, then, this whole business was wrong, and no further analysis would be necessary.
From any point of view, this is a very disturbing case. Perhaps the most disturbing thing about it is the father’s professed lack of internal conflict around this decision. It was “easy” according to him. Ashley’s parents are not, as many have asserted, off limits to legitimate criticism merely because they found themselves in a difficult position.
This comment was written by Susan.Report this comment to the moderators
January 17th, 2007 at 10:43 am
CJ wrote:
“Jane, Ashley’s parents have lives beyond Ashley and a right to try for a healthy, functional child. Whatever moral obligation her parents have to her, they should not have to forfeit their right to future offspring.”
Quote from Ashley’s parents: “We tried hard and found it impossible to find . . . affordable care providers.”
CJ, I couldn’t agree more with your statement. I certainly do not begrudge any parent the right to future offspring simply because their former child is severely handicapped. Rather, I am stating the obvious. Future offspring drain parents of time and finances; I don’t believe this is a debatable point. And if adding future offspring is done so at the expense of having to mold the handicapped child into a more convenient package by removing healthy organs and stunting her growth, then the price paid for that future offspring is far too extreme because it is, tragically, paid solely by the handicapped child.
And I think you’re right to concern yourself with the implication this atrocity will have. The health care system is overburdened as it is and our government has proven it will find an easy, cheaper fix at the expense of human violation. This is a patent example of just such a thing. Healthy organs in Ashley’s body were removed for convenience and nothing more. Certainly, not even Ashley’s parents have made any case of benefit to Ashley, rather a bunch of assumptions and suggestions of what may happen in the future and that, if so, would discomfort Ashley.
I’ve noted this prior but to remove Ashley’s uterus and breast tissue because she may or may not experience menstrual cramps and she may or may not develop large, uncomfortable breasts and she may or may not develop uterine or breast cancer, well, that’s just awful (to say nothing of suggesting Ashley has a better chance of being raped by having breasts - as if children aren’t raped all too frequently in our world).
It was touted as a pre-emptive strike against the body of a child that may likely have been equally comfortable with all of her natural healthy organs just as they were.
Pandora’s box is wide open - what organ will go next?
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 10:54 am
Jane, if you really want to spend time demonizing people who disagree with you as monsters who don’t care about Ashley’s well-being or humanity, you need to keep in mind that this can cut both ways.
Or, to put it another way: Why don’t you care how much this girl suffers? Why don’t you care how much pain she goes through? Why don’t you care how much she cries because her parents can’t hold her when she grows too large to be carried? Why aren’t you paying any attention to her quality of life issues?
Why is her uterus more important to her than she is?
Why do you want her to suffer?
Look, I’m willing to listen to your arguments . . . and I think everyone who disagrees with you is . . . but the people who disagree with you are not evil or denegrating Ashley’s humanity or or focused on the convenience of Ashley’s parents. They’re focused on Ashley’s quality of life.
I don’t think you’re inhuman for holding an opposing opinion on the best course of action here. Please return the favor.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 11:04 am
Kimberly,
If you could somehow detach your personal circumstances from my words, I think you might find that my message is far more peaceful, accepting and caring than a superficial glance.
1) I am not against the removal of life support devices and it does break my heart to imagine the sheer agony parents must face in doing so. I don’t even know how they recover, yet sometimes that decision must be made.
2) I don’t begrudge Ashley’s parents from moving on in their lives and from building a bigger family. In fact, bravo! But not at the expense of their handicapped daughter - the one who can’t complain. And unreal as it may seem to you, there are many loving couples waiting to adopt special needs children with no plans to chop them into manageable luggage. That is a preferable option.
3) The forced sterilization of mentally handicapped individuals has been done before. I’m certain a great many victims of this never understood what was done. But does someone’s inability to grasp the indignity done to them grant us license to do it? Ashley will never understand what was done, true. She also won’t understand being paraded outisde in the nude with words like “freak” drawn on her body. Does that mean you don’t violate her dignity to do such a thing?
It isn’t about what she understands; it’s about what we as a civilized, humane society understand and what we’ll accept.
An indignity is recognized by the act, not by whom it is done to.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 12:12 pm
Myca,
I’m sure it is you, not I, who has used the word “evil,” so please don’t attribute that to me.
If you read the blog of Ashley’s parents, I think you’ll find that her quality of life was fine prior to the “Ashley Treatment.” So I’m not sure what quality of life issues you believe I am unwilling to consider that needed alleviating in this child. (Have you even bothered to read what I’ve written?)
The reasons her parents gave for the “Ashley Treatment” were all based on future assumptions and predictions, not on any then-current issues Ashley was having.
But I’m open to being wrong. Perhaps you can find where they mention Ashley having unmanageable pain by her uterus or developing breasts? Or you might show me where her growth was causing Ashley pain. I welcome that information, truly.
Lastly, neither Ashley’s uterus nor any other organ of hers is more important than she is. We agree. (and, still, that shouldn’t sanction the removal of her healthy organs)
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 12:23 pm
Regarding Ashley’s treatment, Sandy Collington, mother of a girl with cerebral palsy, said, “All parents face difficult decisions for their children, whether disabled or non-disabled but the idea that we should prevent our children from developing into adults is appalling.”
This comment was written by Hanna J. Greene.Report this comment to the moderators
January 17th, 2007 at 12:24 pm
Wow, thanks for completely ignoring my point, Jane.
Just keep on attributing malice to the people who disagree with you, and we’ll be certain to do the same back, and then we’ll all yell at one another, and that will be totally enlightening.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 12:50 pm
Myca,
Please tell me, did you have a question I did not answer? What point did I ignore?
As for attributing malice to those who disagree? It is you who used words like “evil” and “monsters,” I sure didn’t.
I think the only other point was what you wrote below:
“Why don’t you care how much this girl suffers? Why don’t you care how much pain she goes through? Why don’t you care how much she cries because her parents can’t hold her when she grows too large to be carried? Why aren’t you paying any attention to her quality of life issues?”
And I addressed that. There is no mention from Ashley’s parents that she EVER suffered from uterine, breast or growing pains. Yet they removed her organs on the off chance that she might one day find discomfort in those organs. Now you can say that’s a very rational approach and I will say that it’s barbaric. We simply disagree. I would rather take a wait-and-see approach over prematurely and needlessly removing healthy organs on the irrational fear of what may happen.
As for “yelling” at one another, I should hope not.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 12:55 pm
No, no, no, no, no. My point was not that you don’t care about Ashley, my point was that if your opponents wanted to paint you as someone who denies Ashley’s humanity (as you have done to those of us who disagree with you), we easily could.
I don’t think that that benefits anyone. I don’t think that demonizing your opponents benefits anyone. I don’t think that taking a discussion on what’s best for Ashley and trying to make it about what’s conveinient for Ashley’s parents benefits anyone. I think it’s a red herring.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 1:16 pm
“I don’t begrudge Ashley’s parents from moving on in their lives and from building a bigger family. In fact, bravo! But not at the expense of their handicapped daughter - the one who can’t complain. ”
The two other children (Ashley’s siblings) have nothing to do with anything. Whether the parents had no other children or twelve other children - they’re still going to be unable to lift, carry and turn her as she gets bigger. The existence of the siblings is a huge and irrelevant straw man, and it just makes you look as though you’re hoping to swing at the parents and hit anything that is remotedly near them. It doesn’t help your argument at all.
“And unreal as it may seem to you, there are many loving couples waiting to adopt special needs children with no plans to chop them into manageable luggage. That is a preferable option.”
Big deal. Unless there’s a race of super-giants being created that I know nothing about, any other caregiver of normal height/weight/stature isn’t going to be any more able to lift and carry her than are Ashley’s parents. The issue of not being able to be moved, and the bedsores and infections and ill-being as a result, applies to anyone who grows to adult size and is incapacitated, regardless of whether they’re cared for by their families at home or by staff at a group home.
Personally, the discomforts of menstruation to me, a grown woman, are slight and not cumbersome in the least. But that doesn’t give me the right to project that therefore they’d be slight and not cumbersome to someone who doesn’t have the ability to even understand / comprehend the discomfort. And what would be a little bit of discomfort to ME could easily be of great discomfort and angst to someone who doesn’t know any differently. The appalling lack of kindness and “desire” to have her experience menstruation “just cause it’s natural” is unbelievable. Should we also put food in her mouth because that’s the natural way of eating, even though she’d choke and aspirate it?
BTW, why aren’t you worked up over the “lack of dignity” of her parents forcing her to have a feeding tube (and the surgery to insert it) without her permission?
And of COURSE she’s human. That’s not up for debate in the least, IMO.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 1:20 pm
Legal, safe, acceptable - I have an issue with one of those words, the last one. Acceptable it might be to you, and to Ashley’s parents, and perhaps to Robert. But how do you know that it is acceptable to the most important person in this scenario - Ashley? ”
You don’t. You also don’t know whether being on a feeding tube is acceptable to her either, but I don’t see anyone raising hell when parents with an incapacitated daughter consent to surgery for a feeding tube. You don’t know at all what’s acceptable to her, but I daresay that Ashley’s parents - the ones who have spent the last 9 years of their life taking care of her, and by all accounts doing a masterful job - probably have just a tidge more insight into what she might want than you? And if they say that she would value being held / carried, which she gets pleasure from, more so than the abstraction of having an extra foot in height and a uterus, then I think it’s completely reasonable.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 1:23 pm
“And I addressed that. There is no mention from Ashley’s parents that she EVER suffered from uterine, breast or growing pains. Yet they removed her organs on the off chance that she might one day find discomfort in those organs. ”
Well, actually, removing them is extremely prudent medically in the light of the high-dose estrogen therapy that she’s receiving for the growth attenuation. The growth attenuation is driving the rest of the medical decisions, which keeps getting ignored in the discussion. It’s too bad that people with agendas have re-cast this as “they wanted to remove her uterus and breasts because periods are icky and she won’t be a tease!”
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 1:30 pm
“If the convenience of Ashley’s parents to carry, transfer, snuggle her is impeded by her increasing weight, would you support removing the legs from a 16 year old in Ashley’s condition for the same benefits? Honestly, think about that long and hard. Because if you would not support removing legs that will never work and legs that make mobility much more difficult for the family, as yourself how removing a uterus and breast tissue was more necessary. I would be very interested to understand your moral repugnancy for one over the other.”
It’s not an issue of moral repugnancy, it’s an issue of practicality. The surgery to remove legs is many times more complicated than the surgery to remove a uterus. The possibilities of phantom pain and infection at the amputation sites are much greater. No one has phantom-uterus pain, whereas amputees suffer from phantom-limb pain for years. You simply can’t compare the two as side-by-side options and demand that they be thought of equally and think that there’s a “gotcha”.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 1:32 pm
“As I’ve mentioned previously, Ashley’s parents might have considered their lives full enough with a mentally handicapped child, given the inherent drain of time and expense, and not increased their family. Doing so created a far more desperate situation and the Ashley Treatment was created. ”
Did each birth of a successive sibling take away height/physical strength from the parents or something? I’m afraid your argument doesn’t make any sense.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 1:33 pm
3) The forced sterilization of mentally handicapped individuals has been done before. I’m certain a great many victims of this never understood what was done. But does someone’s inability to grasp the indignity done to them grant us license to do it? Ashley will never understand what was done, true. She also won’t understand being paraded outisde in the nude with words like “freak” drawn on her body. Does that mean you don’t violate her dignity to do such a thing?”
If, HEAVEN FORBID of course, Ashley had been raped in a nursing home and became pregnant, does that also mean that you would not support her parents getting her an abortion because she could not consent to an abortion? Would you be arguing that she should bring the baby to term because, after all, that’s what’s natural? Because if so, there’s really nothing more to say.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 1:36 pm
When caregivers are entrusted with mutilation, it’s not going to be a very long leap before you find the same happening in nursing home facilities all around the country - not only to the elderly, but to the thousands of patients in PVS. And you’re saying that’s okay because caregivers know best. ”
Sure. Caregivers can put D-N-R orders on their loved one’s bedsides too, or request that feeding tubes be pulled, and it’s all ok with me. In fact, my living will specifically requests that my caregivers and loved ones do so under specific circumstances. Why, is there a problem with that?
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 2:21 pm
Suzanne:
“The two other children (Ashley’s siblings) have nothing to do with anything. Whether the parents had no other children or twelve other children - they’re still going to be unable to lift, carry and turn her as she gets bigger.”
- I’ve really tried to be delicate about this but then, unfortunately, my point is either ignored or missed altogether. Put bluntly, the finances of a household are not limitless. Adding more children only exacerbates that reality. And that’s fine when the implication is that little Susie has to give up piano or dance after a brother joined the family and he takes guitar lessons. But if adding siblings for Susie means homecare for her is now unaffordable and stunting her growth seems the only way to manage this growing helpless child….well, then that would be a tragic statement indeed. (and quite avoidable)
“Unless there’s a race of super-giants being created that I know nothing about, any other caregiver of normal height/weight/stature isn’t going to be any more able to lift and carry her than are Ashley’s parents.”
- But most loving parents accept that they need to accommodate life for their special needs child, not alter the child’s body the way one would with a car.
“the discomforts of menstruation to me, a grown woman, are slight and not cumbersome in the least. But that doesn’t give me the right to project that therefore they’d be slight and not cumbersome to someone who doesn’t have the ability to even understand / comprehend the discomfort.”
-You’re exactly right Suzanne, which is my point – only in the reverse. The removal of her uterus was done because her parents believed they had a right to project what her experiences of menstruation would be. Ashley lost an organ from that projection.
“why aren’t you worked up over the “lack of dignity” of her parents forcing her to have a feeding tube (and the surgery to insert it) without her permission?”
- Because a feeding tube is life and death. In kind, no one would object to removing Ashley’s organs or limbs if they were cancerous. Parents choose to put their children through chemotherapy and related surgeries all the time. That’s done to save a child’s life – and I sure hope you understand the distinction.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 2:28 pm
“Well, actually, removing them is extremely prudent medically in the light of the high-dose estrogen therapy that she’s receiving for the growth attenuation. The growth attenuation is driving the rest of the medical decisions, which keeps getting ignored in the discussion. It’s too bad that people with agendas have re-cast this as “they wanted to remove her uterus and breasts because periods are icky and she won’t be a tease!”
- If what you’re saying is that Ashley is more susceptible to gynecologic problems as a result of the high-dose estrogen therapy, then all the more tragic to have opened that door. And why, because every last bit of this was avoidable.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 2:33 pm
“It’s not an issue of moral repugnancy, it’s an issue of practicality. The surgery to remove legs is many times more complicated than the surgery to remove a uterus. The possibilities of phantom pain and infection at the amputation sites are much greater. No one has phantom-uterus pain, whereas amputees suffer from phantom-limb pain for years. You simply can’t compare the two as side-by-side options and demand that they be thought of equally and think that there’s a “gotcha”.
- You would be well served to learn about thousands of women with various medical complications resulting from a hysterectomy. But that’s really a minor point. “Practicality” is exactly what the “Ashley Treatment” is NOT supposed to be about, yet there you have it. It’s practical to lop off her body parts – she didn’t need them anyway, so it was done. Glad you see that.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 2:46 pm
“If, HEAVEN FORBID of course, Ashley had been raped in a nursing home and became pregnant, does that also mean that you would not support her parents getting her an abortion because she could not consent to an abortion? Would you be arguing that she should bring the baby to term because, after all, that’s what’s natural? Because if so, there’s really nothing more to say.”
- Well, that wasn’t supposed to happen. You see, Ashley’s parents have assured the public that they would NEVER put her into an institution, that even if she grew to 300 pounds, she would remain in their home, cared for by her family.
“Sure. Caregivers can put D-N-R orders on their loved one’s bedsides too, or request that feeding tubes be pulled, and it’s all ok with me. In fact, my living will specifically requests that my caregivers and loved ones do so under specific circumstances. Why, is there a problem with that?”
- I would remind you of this: every single human being must die, that is a profoundly natural reality. And sometimes the parents of children in tragic circumstances must face tough questions about life support. Ashley’s parents opted to remove her organs for the sake of convenience; there’s no comparison to be made.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 2:50 pm
Myca
I’m sorry that you have failed to see the love, humanity and logic that Jane has carefully outlined with each post.
In other threads I’ve seen many people denigrate MRA or racist thoughts/actions without second thought. Part of being an activist is to call bullsh*t when you see it. I don’t hear too many people complaining about that. Why is it that when someone is speaking on behalf of the disabled with the same passion and concern as feminists speak on behalf of gender equality she is suddenly demonizing the other side and being all around mean?
Oh, I forgot, many feminists have the same ablist crap as the rest of the world and haven’t moved past it. Look at the original post. What was done to Ashley was inhumane and is a violation of her personhood - it’s a disability rights issue to be sure, it is also a FEMINIST issue - because it’s true that her parents wanted to keep Ashley a little girl. Not just because size wise it makes her easier to move, but the gist I get from what they themselves have written is because it makes it easier to love her. Does anyone else not see the connection to the diminutive status of women for CENTURIES? They want her to remain a little girl and not grow up because it is easier on them. Do you really not see a problem with that?
I actually haven’t seen Jane “demonize” anyone - least of all Ashley’s parents (who should they have wanted to keep this private, should not have started a blog reccommending this treatment). Rather I have seen her carefully and lovingly point out that at the end of the day what was done was not necessary and no one has yet provided a cohesive argument that it was.
Stunting her growth and cutting out healthy organs and tissues was done instead of other things that are available - lifts, equipment, qualified care providers etc.
I have said this before and I will say it again. I do not think that Ashley’s parents don’t love their daughter. I think they love her in the only way they know how and they probably really did believe this was best. Mothers in Africa who have their daughters circumsized love their daughters too and they are doing what they truly think is best for them. It doesn’t make it right.
I also don’t trust doctors. And in fact, I think when you put 40 of them together they become less trustworthy, not more. But that only comes from years of personal and professional experience with physicians. If you want to believe the authority of physicians is almighty and they MUST be right because a bunch of them said so, fine.
I hope those of you who feel that way never argue that women are unnecessarily encouraged into C-sections and that we shouldn’t always trust modern medicine to treat women’s bodies in ways that are appropriate.
Jesus, don’t we frequently write about how UNTRUSTWORTHY institution of medicine is when it comes to ethics and women’s bodies? Why is it that we are willing to throw all that suspicion and skepticism away in this case?
I really have to stop coming here. It’s making me lose faith in feminists and that’s not a good thing.
This comment was written by Kate L..Report this comment to the moderators
January 17th, 2007 at 3:28 pm
Gotcha.
I’d agree that as an alternative to these operations, what they should have done is give Ashley up for adoption.
Then, as she sobbed, alone and unable to understand why the only parents she’d ever known weren’t holding her, suffering unbearable menstrual cramps, unable to lie comfortably due to her large breasts (which run in the family), cared for by strangers, waiting in vain for an adoption or the love that will never come, totally unable to understand the trauma of puberty . . . she could think to herself, “well, at least I have my uterus.”
Congratulations, guys, you’re hella compassionate.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 3:54 pm
Myca;
I missed where anyone argued anything like that…
This comment was written by curiousgyrl.Report this comment to the moderators
January 17th, 2007 at 4:02 pm
Yes, and I don’t think any of us ever argued that healthy organs ought to be ripped forcibly from unimpared children, but that certainly didn’t prevent that particular caricature of our position.
I maintain that since they’re arguing against the procedures that allow Ashley’s parents to hold her, that means that they don’t want Ashley’s parents to hold her. Since having her parents hold her is Ashley’s primary joy in life, clearly they would prefer for her to not feel joy. I find that incredibly offensive and I have to say that the only possible reason that they think it’s okay to make that argument is that Ashley is disabled.
I believe that whatever the level of cognition, everyone deserves whatever measure of happiness they can achieve. Apparently some disagree.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 4:11 pm
Myca:
Honestly, if you want respect from me, you might want to demonstrate some of your own. “Gotcha” is probably not the way to start, but I can do the same.
“Then, as she sobbed, alone and unable to understand why the only parents she’d ever known weren’t holding her, suffering unbearable menstrual cramps, unable to lie comfortably due to her large breasts (which run in the family), cared for by strangers, waiting in vain for an adoption or the love that will never come, totally unable to understand the trauma of puberty . . . she could think to herself, “well, at least I have my uterus.”
- Okay Myca, you win. You “got me” there! Yes, we should remove the healthy organs of mentally deficient children in the remote event that those organs may one day cause them natural discomfort or get in their way or even that they may one day harbor malignancy. Remove their eyes to stave off eye cancers, remove their limbs so reduce area of future bed sores, remove vocal cords so they don’t involuntarily make noises that frighten them.
Yes, hack it all off - they’re just mental defectives, right? Oh, and as a benefit to them, they’ll be more manageable for their families to handle. Oh joy!
After all, they don’t have the rights of someone like…say…you do.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 4:15 pm
See, Jane, I more or less think that that’s the argument you’ve been making all along. Like I said in my last post,
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 4:20 pm
My position is this:
Ashley has no sense of bodily integrity, and will never use (and can never ethically use) her womb.
She does have a sense of whether or not she’s being held and carried by people who care for her.
If it were me, and if I had to give up my (unused and unusable) testicles in order to maintain one of the few things in life that brings me joy, I would do it in a quick second.
That’s where my decision comes from, not viewing Ashley as less than human or lacking empathy or thinking it’s okay to butcher the mentally impared.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 4:21 pm
And I say this as someone with full cognition who’s able to make these decisions for myself and who has a sense of intellectual attachment to my reproductive organs. Ashley lacks all of this.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 4:36 pm
“I don’t think any of us ever argued that healthy organs ought to be ripped forcibly from unimpared children”
- Forcibly ripping healthy organs from unimpaired children is not ever what you’ve argued, AGREED. You’ve never suggested such a heinous act! Yet, doing that to impaired children is just fine and dandy - well, so long as mom and dad say so.
“I maintain that since they’re arguing against the procedures that allow Ashley’s parents to hold her, that means that they don’t want Ashley’s parents to hold her.”
“clearly they would prefer for her to not feel joy”
- You fabricated an attributed to me a ridiculous, nonsensical position I do not have and then went on to tear it down with ease. Talk about building a strawman!
Using your ridiculous rationale, I could say that by removing her organs, you want to rob this girl of the opportunity to have a family, her own lovely children to raise. Yet I don’t accuse you of such hysterical motivations since, for one thing, I know it’s NOT your position.
What this method actually demonstrates is how incapable you are of arguing a real point on its merits. If you feel ill-equipped and, believe me, thus far you are, bow out gracefully. Otherwise, everyone gets to witness these mad leaps of gibberish.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 4:44 pm
Okay, well, I’ve stated my position fairly clearly in comments #248 and #249.
I’m not arguing that there’s no trade-off here between quality of life issues and bodily integrity issues, I just think that the seesaw pretty clearly comes down on the side of quality of life.
My problem is that I feel as though all through this you’ve refused to acknowledge the trade-off exists at all, have attributed malice to your opponents, and have simply ignored arguments based in quality of life considerations.
It’s one thing to argue that it’s more important for her body to be intact than for her to be happy or tfor her to be able to be carried by her parents, but to not even acknowledge that there’s a trade-off at all is intellectually dishonest.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 4:45 pm
“I don’t think any of us ever argued that healthy organs ought to be ripped forcibly from unimpared children, but that certainly didn’t prevent that particular caricature of our position.”
Myca, can you point to where I suggested that you argued for the forcible removal of healthy organs from unimpaired children? Because I’d like to see where I made a “caricature” of that position.
As for losing your male parts to “maintain one of the few things in life that brings me joy,” can you please tell me how removing Ashley’s uterus and breast tissue has allowed her to “maintain” joy she would otherwise have lost?
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 4:51 pm
In post #198, for example, you said:
In the immediately previous post Robert said:
Back in post 189, Ampersand said:
This is what I mean when I say that you simply ignore dissenting arguments based in quality of life considerations. The passage from your post #198 is simply untrue.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 4:54 pm
Certainly. I believe that this removal was performed as part of the process of keeping her small so that her parents can continue to lift and carry her, one of the few things which bring her joy.
If she grew large enough so that her parents couldn’t lift and carry her, she wouldn’t be able to enjoy that happiness any longer.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 4:58 pm
Oh, and the breast tissue.
Her parents have explained (several times) that extremely large breasts are genetically favored for the family, and that Ashley enjoys lying on her front.
With very large breasts, it becomes difficult to get comfortable, and lying on one’s front is impossible.
As I’ve said elsewhere ,I don’t view any of my organs as magic or special as compared to any other. My sex organs are not sacred. Neither are anyone else’s. What makes them useful is the use to which they’re put.
Ashley is unable to ethically put either her breasts or uterus to their intended purpose. At that point, they’re like an appendix . . . they’re only a liability.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 4:59 pm
“Ashley has no sense of bodily integrity, and will never use (and can never ethically use) her womb.
She does have a sense of whether or not she’s being held and carried by people who care for her.
If it were me, and if I had to give up my (unused and unusable) testicles in order to maintain one of the few things in life that brings me joy, I would do it in a quick second.
That’s where my decision comes from, not viewing Ashley as less than human or lacking empathy or thinking it’s okay to butcher the mentally impared. ”
Agreed (though substitute uterus for testicles in my case).
The language being used is quite telling. If you view this as butchering the mentally impaired, did you also view the Schiavo case as murdering the mentally impaired?
I guess I can’t fundamentally see a hysterectomy as “butchering.” It’s just a uterus. I’m done with mine, having borne several children, and if it needed to be removed tomorrow, oh well. It hardly makes me less of a woman or anything. Maybe it makes other women feel like they are less women, but that’s their hang-up, I suppose. I don’t know why I’m supposed to be more attached to it than, say, my appendix.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 5:01 pm
Crossposted, but yeah. Same feeling, same example.
This comment was written by Myca.Report this comment to the moderators
January 17th, 2007 at 5:03 pm
“It’s one thing to argue that it’s more important for her body to be intact than for her to be happy or tfor her to be able to be carried by her parents, but to not even acknowledge that there’s a trade-off at all is intellectually dishonest.”
Myca, the flagrant intellectual dishonesty belongs to you and it is clearly documented above. It is you who has claimed I “don’t want Ashley’s parents to hold her” and that I “would prefer for her to not feel joy” (both comments in #245) - yet you can’t substantiate either!
If there was no “trade-off,” I would be making irrational comments like you do. I would say, “gee, they removed her uterus and breasts ’cause they felt like it.” Uh, but that would be intellectual dishonesty and it has no place in my camp. I wish you felt the same.
I acknowledge the reasons for their decision exist. I merely state, quite emphatically, that those reasons are extremely premature and deface the integrity of this girl to be treated as a human being. Removing organs is quite radical. Besides which, even if she did experience minor cramping, most women get by just fine with an Advil. I think that’s a far better alternative to cutting open a young girl and taking her organs - which is closer to swatting a fly with a sledgehammer (i.e., far more excessive than necessary).
I don’t think that making the assumption that the child may or may not one day have menstrual cramps or that she may or may not develop large breasts warrants removing her perfectly healthy organs when no one knows that any of that would ever come to pass.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 5:07 pm
If, HEAVEN FORBID of course, Ashley had been raped in a nursing home and became pregnant, does that also mean that you would not support her parents getting her an abortion because she could not consent to an abortion? Would you be arguing that she should bring the baby to term because, after all, that’s what’s natural? Because if so, there’s really nothing more to say.”
- Well, that wasn’t supposed to happen. You see, Ashley’s parents have assured the public that they would NEVER put her into an institution, that even if she grew to 300 pounds, she would remain in their home, cared for by her family. ”
You dodged my question nicely. But sadly, these things CAN go on. Especially if she needs a nice big strong man to turn her when her parents are no longer able to. IF, again heaven forbid, she was raped, obviously it goes without saying that the rapist would have violated her bodily integrity. Would it be an additional violation of her bodily integrity if her parents were then to decide that she should have an abortion rather than serve as an incubator? I’m just trying to get to whether you think there is any medical decision that her parents can make for her that doesn’t violate her bodily integrity.
If she didn’t have the hysterectomy, and she wound up menstruating, and the parents prophylactically decided that she should have Advil through her feeding tube -x- days a month, would that be violating her bodily integrity? Or is it just the presence of a scalpel that violates bodily integrity, but not the delivery of a drug through a feeding tube (which in and of itself necessitated surgery)?
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 5:12 pm
Myca,
Even in the cut/pasted posts of others you illustrated, nothing, not one single time did you show how I suggested that you argued for the forcible removal of healthy organs from unimpaired children? Nor do you demonstrate where I made a “caricature” of that position.
Are you confused? Do you know know the difference between impaired and unimpaired?
I specifically said earlier that the same people who had no trouble with Ashley’s uterus and breast removal wouldn’t likely be as open to her leg removal on the principle of being lighter and easier to manage. And, some posters said they would support leg removal if it was going to provide a benefit in her quality of life.
So….what’s the problem? AGAIN, where do I SUGGEST THAT YOU ARGUED FOR THE FORCIBLE REMOVAL OF HEALTHY ORGANS FROM UNIMPAIRED CHILDREN? (and it’s obnoxiously in caps because you have clearly not read your own words!)
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 5:15 pm
“I believe that this removal was performed as part of the process of keeping her small so that her parents can continue to lift and carry her, one of the few things which bring her joy.”
And you’d be wrong Myca. Removing a uterus and breast tissue does not stop growth - that was done by a massive infusion of estrogen over the course of a couple of years.
So, again, how did removing Ashley’s uterus and breast tissue allow her to “maintain” joy she would otherwise have lost?
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 5:16 pm
“documented above. It is you who has claimed I “don’t want Ashley’s parents to hold her” and that I “would prefer for her to not feel joy” (both comments in #245) - yet you can’t substantiate either!”
Jane,
I don’t believe that anyone was seriously arguing that you hold those positions. If I followed the exchange correctly, Myca felt that you were setting up strawmen instead of responding to his arguments. To demonstrate what that felt like, he set up a strawman that is based on but mischaracterizes your arguments.
This comment was written by mandolin.Report this comment to the moderators
January 17th, 2007 at 5:18 pm
“Removing organs is quite radical. Besides which, even if she did experience minor cramping, most women get by just fine with an Advil. I think that’s a far better alternative to cutting open a young girl and taking her organs - which is closer to swatting a fly with a sledgehammer (i.e., far more excessive than necessary).”
Ah, now we’re getting somewhere. I agree that it could be compared to swatting the fly with the sledgehammer.
But in any world without perfect information (in this case, Ashley’s opinions, since she can’t express them), there are two potential mistakes that can be made. In statistics, they are called Type I and Type II errors. In this case, Type I error would be doing nothing and having her suffer in pain, not knowing why or how, not having any of the conceptual knowledge and understanding about menstruation that her “normal” sister does, not being able to indicate that she’s in pain, not being able to indicate whether the pain relief given is sufficient, not even being able to stretch, walk around, do yoga or use other non-pharma methods of pain relief. Type II error would be doing the hysterectomy when in fact it wasn’t “needed” and her menstrual periods would have been uneventful / non-traumatic, so Ashley suffers internal sadness for being aware that she, unlike “normal” women, no longer has a uterus.
In setting my decision criteria, if it were my daughter, I’d much rather avoid the Type I error than the Type II error. There are potential errors in every move we make — in doing things and in not doing things. In this instance, in my opinion, the Type II error of doing-something-that-wasn’t-actually-needed is far less important than the Type I error of not-doing-something-that-was-actually-needed. Consult your local statistics book for further explanation. (These are sometimes also called alpha and beta errors instead of Type I and Type II.)
Apply this to Schiavo - the Type I error is doing nothing and meanwhile, the “real Terri” is locked-in, fully aware but unable to communicate and screaming in horror that she doesn’t want to go on like this; the Type II error is doing something (pulling a feeding tube) and meanwhile, the “real Terri” is locked-in, screaming, “no, I want to live.” People’s perceptions of where they stood on Schiavo were based on how they personally weighted the probability of Type I vs Type II error. That’s what happening here too. Myca and I are weighing the probability of Type I (Ashley suffers and can’t communicate it) versus Type II (Ashley’s upset she no longer has a uterus) and concluding that we personally think Type I is a more serious concern. You, of course, are welcome to feel differently.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 5:20 pm
“Her parents have explained (several times) that extremely large breasts are genetically favored for the family, and that Ashley enjoys lying on her front.
With very large breasts, it becomes difficult to get comfortable, and lying on one’s front is impossible.”
Myca, Is this your strategy? To lie? ‘Cause I’ll just plain feel better if you concede you didn’t read her parent’s blog and that you just don’t know their reasons for the surgeries.
1) No, they NEVER said Ashley “enjoys lying on her front.” 2) She DID NOT have very large breasts - she was an undeveloped child. 3) To assume she will develop large, grotesque breasts that would impede her every movement and be a source of extreme discomfort for her is absurd and horrifying, particularly when used as justification to have them removed!
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 5:22 pm
“I believe that this removal was performed as part of the process of keeping her small so that her parents can continue to lift and carry her, one of the few things which bring her joy.”
And you’d be wrong Myca. Removing a uterus and breast tissue does not stop growth - that was done by a massive infusion of estrogen over the course of a couple of years.
So, again, how did removing Ashley’s uterus and breast tissue allow her to “maintain” joy she would otherwise have lost? >>
What benefit do you think Ashley would have from knowing (to the extent that she can know things) that she has a full adult height, an intact uterus and womanly breasts? Not what benefits do YOU have from those things — what benefits does Ashley get.
This comment was written by Suzanne.What benefits do you think Ashley would have, both physically and emotionally, from being able to be held by her family and turned more often to prevent bedsores and the like? Not what benefits do YOU have from these things (presumably none, since you don’t need to be turned to prevent bedsores, I’m guessing) — what benefits does Ashley get.
Report this comment to the moderators
January 17th, 2007 at 5:25 pm
“No, they NEVER said Ashley “enjoys lying on her front.” 2) She DID NOT have very large breasts - she was an undeveloped child. 3) To assume she will develop large, grotesque breasts that would impede her every movement and be a source of extreme discomfort for her is absurd and horrifying, particularly when used as justification to have them removed!”
It WAS a reasonable assumption that she’d develop large breasts given family history, including family members who required breast reductions. And did you read any of the comments over at Pandagon about the real difficulty in fitting larger-breasted women into the types of wheelchair harnesses she uses, and how incredibly difficult it is even for disabled women who CAN communicate?
I think you’re projecting the experience of a “normal” large-busted women to the experience of someone who is immobile and who remains wherever she is placed. She can’t so much as brush a hair from her face, much less readjust herself in bed or in a wheelchair.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 5:30 pm
To assume she will develop large, grotesque breasts that would impede her every movement and be a source of extreme discomfort for her is absurd and horrifying, particularly when used as justification to have them removed!”
Are you also not aware of the fact that a) br ca runs in the family, b) she won’t be able to do self-exams, c) br exams on someone of her cognition level can be upsetting / traumatic in a way they aren’t for “normal” people; d) forcing someone in that state to undergo a mammogram and be smooshed into a machine, not knowing what’s going on, would be incredibly traumatic for her?
BTW, if her parents had her get mammograms at -x- intervals, would that be a violation of her bodily integrity since, after all, she’s not consenting?
The lack of compassion for her REAL experience is unbelievable. All the fancy-schmancy talk about her valuing her uterus and breasts, but who gives a shit if the poor thing is traumatized by blood and pain she doesn’t understand, pap smears, breast exams and mammograms she doesn’t understand — as long as she has her almighty uterus that she’s not even aware of, it’s all good. Blech.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 5:31 pm
Let me tell you something. My positions may not make everyone feel warm and fuzzy but I don’t dodge! If I didn’t answer this previously, it was an oversight and I’ll do so now.
“You dodged my question nicely. But sadly, these things CAN go on. Especially if she needs a nice big strong man to turn her when her parents are no longer able to. IF, again heaven forbid, she was raped, obviously it goes without saying that the rapist would have violated her bodily integrity. Would it be an additional violation of her bodily integrity if her parents were then to decide that she should have an abortion rather than serve as an incubator? I’m just trying to get to whether you think there is any medical decision that her parents can make for her that doesn’t violate her bodily integrity.”
- This is not all that much a tough call because an embryo is not a natural part of the human body. It is not an organ and its existence is transient. In the event such a repulsive thing were done to Ashley, removing the embryo would be no more complicated than a therapeutic D & C and would rob her of nothing she was born with.
“If she didn’t have the hysterectomy, and she wound up menstruating, and the parents prophylactically decided that she should have Advil through her feeding tube -x- days a month, would that be violating her bodily integrity? Or is it just the presence of a scalpel that violates bodily integrity, but not the delivery of a drug through a feeding tube (which in and of itself necessitated surgery)?”
- If removing a healthy organ is tantamount to giving your child an Advil, then we’ve veered dangerously off the road.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 5:33 pm
“I don’t believe that anyone was seriously arguing that you hold those positions. If I followed the exchange correctly, Myca felt that you were setting up strawmen instead of responding to his arguments. To demonstrate what that felt like, he set up a strawman that is based on but mischaracterizes your arguments.”
Mandolin,
If Myca felt that I was setting up strawmen, he should have pointed it out - as I clearly did so when he established one. Instead, he hurled some baseless, hysterical nonsense my way.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 5:47 pm
Suzanne,
Thank you for extending me the honor of disagreement regarding Type I or Type II errors and which I’d rather risk.
But what I disagree with is the basis upon which you formulated the descriptions of Type I and Type II.
I could say:
Type I: Ashley experiences normal and expected menstrual discomfort. She cannot communicate such and endures painful periods throughout her reproductive years. (She may also experience headaches she cannot communicate - do you remove her brain?)
Type II: On the chance that Ashley may eventually experience menstrual cramping, her uterus is removed. Ashley experiences no associated cramping. In the process the precedent is set that Ashley is less worthy of her organs than her normal sister. Next year a case can be made to remove her ear drums over the fear that she may suffer tinnitus in the future - and the organ loss piles up.
Yeah, well, I guess we will have to disagree.
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 5:49 pm
“What benefit do you think Ashley would have from knowing (to the extent that she can know things) that she has a full adult height, an intact uterus and womanly breasts? Not what benefits do YOU have from those things — what benefits does Ashley get.”
Oh, not so fast Suzanne. This is not all you-dole-out-questions-and-I-answer-you. How about you address my question to Myca:
How did removing Ashley’s uterus and breast tissue allow her to “maintain” joy she would otherwise have lost?
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 5:56 pm
“It WAS a reasonable assumption that she’d develop large breasts given family history, including family members who required breast reductions. And did you read any of the comments over at Pandagon about the real difficulty in fitting larger-breasted women into the types of wheelchair harnesses she uses, and how incredibly difficult it is even for disabled women who CAN communicate?”
- Suzanne, her own mother doesn’t have large breasts and the only member noted was an aunt who’d had a reduction. So what?! My aunt had a reduction and my cousin, her daughter, is a full A cup (on a really bloated day). And still, ASSUMING that she MIGHT have large breasts is no reason to remove them before even an ounce of development had begun!
This comment was written by Jane Hill.Report this comment to the moderators
January 17th, 2007 at 7:24 pm
I’m seeing a lot of ablist assumptions about Ashley and her life here. How do you know that being lifted by her parents is one of the few things that give her joy? Just because she doesn’t always communicate in a way that most of us would understand certainly does not mean that she doesn’t experience other pleasures. (I highly reccomend Ballastexistenz’s latest video on this subject.) But because most able-bodied people feel horrified at the thought of ever being “like that”, a whole lot of assumptions about what it must be like get thrown around carelessly without being questioned. I also don’t believe we should necessarily assume that her mental state will never change at all. It certainly wouldn’t be the first time the medical profession has prematurely written off a disabled person.
Another point that supporters of this seem to be overlooking is that the hormonal treatments she is receiving can actually be quite dangerous, perhaps even carcinogenic. (Ironic, given her parents’ use of cancer to justify the procedure.) IMO natural hormonal regulation is preferable from purely a health standpoint. When it comes to non-medically neccessary surgery I’m with the Catholic Church. Unneccessary surgery without consent is particularly apalling.
This comment was written by Sarah.Report this comment to the moderators
January 17th, 2007 at 8:31 pm
“I’m seeing a lot of ablist assumptions about Ashley and her life here. How do you know that being lifted by her parents is one of the few things that give her joy? Just because she doesn’t always communicate in a way that most of us would understand certainly does not mean that she doesn’t experience other pleasures. ”
We don’t, of course. But it’s certainly a more reasonable and reasoned assumption that she gets joy from being held by and spending time with her family, than that she gets joy out of knowing that she has a uterus inside her just like mom, sis, aunt and grandma. But hey, that’s just my assumption.
“I also don’t believe we should necessarily assume that her mental state will never change at all. It certainly wouldn’t be the first time the medical profession has prematurely written off a disabled person. ”
Oh, see, I do. Because I don’t want to pretend that I’m a doctor making armchair diagnoses when there are umpteen real doctors and the consensus is clearly and unequivocally that she won’t. This is the same argument that was made two years ago with Schiavo — “well, I just don’t wanna believe she’s PVS” and so they dragged out that Dr. Hammesfahr whose own medical school repudiated him. And they all looked pretty darn stupid, didn’t they, when that autopsy came out.
This comment was written by Suzanne.Report this comment to the moderators
January 17th, 2007 at 8:36 pm
“This is not all that much a tough call because an embryo is not a natural part of the human body. It is not an organ and its existence is transient. In the event such a repulsive thing were done to Ashley, removing the embryo would be no more complicated than a therapeutic D & C and would rob her of nothing she was born with. ”
It sure is a natural part of a woman’s body who has had sex.
This comment was written by Suzanne.But I thought your issue was related to her dignity and consent? She can no more consent to the abortion than she could to the hyst. So why would the abortion be ok but the hyst not? You mentioned that removing the embryo would be no more complicated than a D&C. Would it make a diff to you if a hyst was no more complicated (medically speaking) than a D&C? If not, then why mention the ‘uncomplicatedness’ of the D&C.
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January 17th, 2007 at 8:55 pm
From a teen’s perspective I agree with everything Ashley’s parents have done for her thus far. Living in today’s society we allow ourselves to be cut up by cosmetic surgeons to “look” more appealing. Why then, can a family not improve the quality of the life of their own child? Who is to say that anyone has the right to go get a breast augmentation? You were born with DD cup sized breasts so what gives you the right to remove them? Ashley will be no more keen to any of these procedures today as she will be 30 years from now. She’d never know life with breasts if she was allowed the chance for them to grow, hell, she doesn’t know what being hungry is. God gave Ashley to her parents, so by all means, let them and God decide what is best for her. At the end of the day she’s their child and agree with them or not, you don’t have to see what they see everyday or deal with what they deal with.
This comment was written by Evyan Durham.Report this comment to the moderators
January 17th, 2007 at 9:09 pm
“If Myca felt that I was setting up strawmen, he should have pointed it out - as I clearly did so when he established one. Instead, he hurled some baseless, hysterical nonsense my way. ”
I’m pretty sure he did. I think you might have missed it.
Also, the child is being given a hormone treatment that will stunt her growth. The hysterectomy is part of that treatment.
And the child did not have large breasts, however she had a likelihood of developing them, and the surgery to remove her current breast buds was minor in comparison to what would have later been required.
All this was talked about at length on the thread. Rather than accusing other people of lying, perhaps you should read more closely.
This comment was written by mandolin.Report this comment to the moderators
January 18th, 2007 at 6:15 am
They also believe if your husband is beating you get theropy but don’t ever get divorced ?!? Really , are we gonna go there ?
This comment was written by Kimberly Anderson.Report this comment to the moderators
January 18th, 2007 at 6:49 am
Um Jane I’m confussed ? Didn’t you say …….
Ashley will