I heard about this today on BBC:
In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little “pillow angel” a manageable and more portable size. The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.
The case has captured attention nationwide and abroad via the Internet, with some decrying the parents’ actions as perverse and akin to eugenics. Some ethicists question the parents’ claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home..
I’m really shocked by this case. I don’t want to be overly critical of parents raising severly disabled kids because I do think there is no good support system in place for them, but I’m shocked that doctors and a medical ethics board were willing to go along with this.
One of the things that really caught my attention was the quotes about breast removal from the blog that the parents have created to explain the surgery:
Ashley has no need for developed breasts since she will not breast feed and their presence would only be a source of discomfort to her. This is especially true since Ashley is likely destined to have large breasts, given her maternal and paternal female lineage; for example, an aunt had a breast reduction operation at age 19. Large breasts are uncomfortable lying down with a bra and even less comfortable without a bra. Furthermore, breasts impede securing Ashley in her wheelchair, stander, or bath chair, where straps across her chest are needed to support her body weight. Before the surgery Ashley had already exhibited sensitivity in her breasts.
And then soon after there is this quote:
Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.
I am at a loss for words :-O :-O
I definitely think this is a feminist issue and a disability rights issue. The the desexualization of the disabled combined with the extremely gendered nature of this treatment just astonishes me. To me feminist reproductive rights advocates should be lining up to challenge this treatment (But if I was a betting women, I’d bet most of them won’t say much.).
I went over to Blue’s site to see if she has responded. She said she will put up a comment soon.
What do you think?
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–
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.
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
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.
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.
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.
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.
as a mother of an eight year old in similar condition to Ashley, all i can say is :
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….
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.
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.
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.
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.
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.
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.
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.
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.
But whatever, carry on, one post by me isn’t going to expand your perception of humanity.
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.
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.
Suzanne,
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.
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.
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.
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?
[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.
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?
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?).
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.
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.
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.]
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).
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.
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.
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?
Problem number 4. the hypothetical circumstances are very different from those the real torture being justified by the ticking bomb argument.
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.
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.
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.
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.
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.
And the breast-bud-removal surgery isn’t anywhere near comparable to breast-reduction surgery in an adult woman.
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.
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.
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?
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”.
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.
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?)
>>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.
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.
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.
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.
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.
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.
Everyone’s natural state is dead, if you take away artificial assistance.
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.
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.
>>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.
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?
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.
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.
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.”
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.
>>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.
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.
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.
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.
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.
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.
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.
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?
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.
“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.
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.
Ashley should not have to be mutilated just because society has not yet learned to properly care for it’s disabled citizens.
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.
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.
>>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.
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.
Kaethe,
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.
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.
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.
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.
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
my blood boil. Even though I respectfully disagree with your position I appreciate your thoughtful comments.
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…)
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.
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.
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.
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
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.”
-Thomas Jefferson
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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/
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?
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)
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 !
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.
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!
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. )
Amp, did you read the dreammom link that Sam posted? Go read it, I think it’s important.
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.
Isn’t that the main function of a uterus ? I don’t think Ashley will be consenting to that any time soon?
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.