Hospital violated state law performing "Ashley Treatment"
I will do more than simply post the links on this soon, but the news for now from the Washington Protection and Advocacy System (soon to be Disability Rights Washington - DRW):
Many people with disabilities have expressed great concern over the use of invasive medical procedures used to keep a young child with disabilities small. As reported at great length, parents of a six-year old girl named Ashley asked doctors at Seattle Children’s Hospital to give Ashley high doses of hormones, and remove her breast buds and uterus.
Pursuant to its PADD federal mandate, the Washington Protection and Advocacy System (WPAS) used its federally granted access authority to initiate an investigation into the use of the “Ashley Treatment.”
The investigation revealed that legal the rights of the child were violated when the hospital involved proceeded with the hysterctomy portion of the treatment without a court order first being obtained.
The hospital acknowledges its mistake and has agreed to implement many procedures to prevent similar legal violations from happening in the future.
Please read the WPAS Investigative Report Regarding the “Ashley Treatment” for more information about what happened to Ashley and how to prevent it from happening to other children with disabilities.
Update: Ashley X's parents respond to today's report:
Parents of Ashley X's Position on the Legal Findings on Hysterectomy
As the loving parents of Ashley X we support the vigilance of WPAS in their effort to protect the vulnerable members of our society.
In 2004 Ashley X was indeed given a hysterectomy without a court order. Prior to the surgery, we had consulted with a disability lawyer and learned that the state law, which is intended to protect the rights of the disabled to procreate, did not apply to Ashley's case since:
1- Given Ashley's developmental state and prognosis, which is well-documented by her doctors and was reported to the Ethics committee, voluntary procreation is not meaningful or applicable to her case and will never be.
2- Sterilization is not the intent of the Ashley Treatment but a byproduct of it
While we support laws protecting vulnerable people against involuntary sterilization, the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. . Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley's.
As responsible and loving parents, deeply concerned for the wellbeing of our child, we provided a better quality of life to our Ashley, who is doing very well under our love and care. We hope that other families of the many children like Ashley will likewise be able to care for and benefit their children without undue obstacles.
We appreciate your continued support, prayers, well wishes, and respect of our privacy.
28 comments:
If the law imposes an "onerous burden" on parents by requiring a court order before sterilization, who bears a truly onerous burden when the law doesn't require a court order?
Wait, we already know the answer to that question....
Yes we do.
The parents' statement amazes me. The entire purpose of the law that was violated is not simply about "voluntary procreation," as I understand it. It's about doing things with people's bodies when they cannot themselves give consent and protecting against that. I'll have to read the Washington law more closely to see if there are nuances to it I don't know about, but to summarize the purpose of legal safeguards against involuntary sterilization as protection of "voluntary procreation" as they have really misses the point.
But then, it always has been about the parents, hasn't it?
Janet
..."puts an onerous burden on already over-burdened families ..." Let's just count how many times we can use the word burden in a sentence, shall we? The very entrenched point of view that people with disabilities are a burden goes right back to the dangerous kind of thinking that supports our dehumanization - whether it be eugenics or special "treatments" that don't/shouldn't require court oversight because even that is a burden...apparently it's all a burden when it comes to treating people with disabilities as equal human beings to some
folks.
The danger of parents acting on their child's behalf to protect their own interests is real, but at the same time parents are, in most cases, the ones best positioned and most likely to act for the child's best wishes.
In this case, the child cannot make any decisions for herself; someone must act for her. Since no one can know her wishes - because she does not appear to have specific wishes about these issues - decisions must be made on the basis of her perceived and presumed best interests. Those decisions will be made either by her parents or someone else who does not know her as well and is not responsible for taking care of her; it seems obvious that her parents would be the better choice unless they are actually working against their child's best interests. It seems obvious they are not doing so deliberately, though perhaps they are doing so inadvertently.
Their decision was that their child's best interests would be served by altering her development - in ways that have no effect on her ability to pursue her own choice of paths in life, because she has no such choice to begin with - to make it easier for her parents, and not some unrelated institution, to remain her caregivers as long as possible. It is certainly a grave imposition on the child's developmental process, but not on her future opportunities in life. If it keeps her in her parents' home longer, the benefits could be considerable. On balance, whether or not it's even the right decision, it doesn't seem like an incomprehensible decision.
Maybe the parents were putting their own interests first - which would violate their obligation as substituted decision-makers - but it's hard to see how. Maybe the child has lost something of great value to her in being denied full stature and sexual maturity, but it's hard to see what she has lost that she herself values, given that she's not aware of the changes. Whether or not, again, one agrees with the decision made, I can't see how it can be characterized as selfish, indifferent, "all about the parents", or failing to treat this patient as an "equal human being". (The fact that most people would not benefit from such procedures does not mean that "equal treatment" demands not giving them to people who would benefit from them. Equal treatment means giving each person the treatment most appropriate for them. It's not clear that was not done in this case; at the very least, it seems clear that that is what was sincerely intended.)
It seems to me that critics would prefer not to have anyone be subject to a procedure they would object to for themselves, out of an apparent fear that such a precedent will increase the danger to themselves. That concern is understandable, but the remedy of allowing - for everyone - only those procedures you would personally approve of for yourself seems to me simply the same problem in reverse.
Keith,
I don't care about the parents. This is NOT, I repeat NOT, about Ashley's parents. Yes, I know they are the able-bodied people in this story, so they instantly rate your sympathy, which I notice is pointedly not extended to the person they are painfully slicing up against her will. But understand, WE are not talking about the ABLE BODIED people in this tale, who HAVE rights that all of you recognize. We are talking about the human being being cut up and dosed with drugs because people like you have decided she is less than human and doesn't deserve the same rights as any other child.
I also don't care about Jehovah's Witnesses who quote the Bible at me to justify denying their children blood transfusions. I take it that is acceptable to you, also? If not, why isn't it?
This is not about Ashley's parents. This IS about a separate human being with rights under the laws of the United States of America, including, one hopes, the right not to be neutered like a common PET, like a fucking BASSET HOUND.
This is not negotiable. HUMAN RIGHTS ARE NOT NEGOTIABLE.
If you don't get that, you are not intellectually capable of this discussion here and now, so take your belief in the intrinsic inferiority of disabled children and shove it up your ass.
Blue can edit the above for lack of civility, if she chooses. But I think when people talk like nazis (deciding which people should be neutered), it is important to be as uncivil as they are.
It seems to me that critics would prefer not to have anyone be subject to a procedure they would object to for themselves, out of an apparent fear that such a precedent will increase the danger to themselves.
Umm, excuse me? We are talking about a procedure pioneered by nazis, that has never EVER been allowed in this country, to be done to ANY child. Ashley is an exception, this is not a procedure that is common or that has been standard IN ANY WAY ... now her parents are putting her out there as a commercial, a veritable poster child for neutering! Hey, you can do this to YOUR basset hound-- whoops--I mean your "pillow angel"...
This is hardly a root canal or even an abortion, you know?
We are worried about a "precedent" because THAT IS WHAT HER PARENTS ARE SAYING! You have, of course, read their website, where they tell other parents to do this?
You have, of course, lots of experience in being told your "mental age" is low, and you know a lot of people who have had that same experience? If not, you have no business entering this conversation, IMHO.
Take your bullshit to Alas and Pandagon, where they love eugenics and neutering inferior girl children.
No matter how dependent your child (or your parent, or your spouse) is upon you, for how long, or what you estimate to be their ability to comprehend, YOU DON'T GET FREE REIN to put that person through any surgeries and treatment regimens you can think of, without ANY oversight.
Is it really too much to expect families and doctors to explain their plan to an outside body and get a court order before embarking on experiments like this one?
Mr. Soul:
Leaving aside the question of civility, as well as that of my ass, I note that your comment seems to almost completely misconstrue everything I wrote.
Most particularly, my entire comment was about Ashley's best interests - not about those of her parents, nor about her parents as people. I really can't see how you could read what I wrote and think that it required a response aimed at "car[ing] about the parents", being "about Ashley's parents", that "they [the parents] rate your sympathy", or any of the other numerous references to them that you make in response to things I did not say.
I suggest that you may have characterized this issue in a particular way in your mind ("people who care about Ashley's parents and not Ashley vs. people who care about Ashley"), and now automatically assign anyone who disagrees with your solution to the category of people who disagree with your priorities. But in fact, my comment, whether it was right or wrong, was entirely in line with your priorities (namely, Ashley's rights).
Not to be repetitious, but my point was simple: I think everyone can agree that the issue is to make the best decision for Ashley that is possible under the circumstances. To do that, whoever has the authority to make that decision has to act out of regard for her legal and moral rights and her best interests. And thus the questions arise: are her parents acting from these motives, and if so are they the best persons to make the decisions in question?
My suggestion was that, whether or not anyone agrees with their final decision, it seems apparent that her parents were acting in what they thought were her best interests. (It's hard to see how it would be in their own best interests to commit themselves to daily care of Ashley requiring physical exertion that is already almost too much for them, for the rest of their lives, if they did not truly want to provide for her needs.) It also seems apparent that they are best placed to act for her, since they know her best and have the greatest emotional bond with her.
That doesn't mean that their decision was right, but I do think the accusations that it was somehow nefarious or made with hostile intent are ungrounded - and therefore distort the issue. It's possible to disagree with their decision without thinking that there were no possible rational grounds for it, or that the parents did not care for their daughter in making it.
Your point about human rights also seems to me to rather miss the issue. Of course Ashley's human rights must be respected - that's why it's vital to make the right decision, acting from a motive of promoting her best interests (as, I note again, I said repeatedly the first time). Carefully considering all aspects of the case and making the best decision for her under the circumstances is how we do go about respecting her rights.
You seem to have made up your mind that the "Ashley procedure" cannot be in her best interests. Perhaps that's correct. But characterizing it as treating her "like a common pet" is, I think, simply wrong. Her parents repeatedly made clear their reasoning and motivation: in short, it was to make sure that Ashley's most devoted and emotionally engaged caregivers (her parents themselves) would be physically capable of caring for her as long as possible, and to prevent complications or possible abuse resulting from her development of a sexual capacity she could not exercise autonomously. It's certainly possible to characterize their decision as drastic, but I don't think it makes any sense to say it wasn't motivated by sincere concern for her welfare.
And so, if you can stop calling people Nazis or pet-neuterers and such long enough to consider what they actually said and did, rather than your simply false and hyperbolic descriptions of what they said and did, you may see the situation as it is: two caregivers making a considered decision motivated by sincere concern for their daughter's welfare. That by no means makes their decision right, but it does make it a decision that should be taken seriously and considered on the merits.
Calling names and declaring categorically that anyone who simply disagrees with you on whether a certain procedure is in someone best interests obviously means they don't care about human rights at all is merely a way of inflating the controversy so you don't have to deal with the issue on its merits. You need to have reasons and evidence for promoting or opposing certain policies; apparently you have chosen your policy without reasons and evidence and are now advocating it inflexibly for everyone, with anger as the only justification you offer. You're welcome to respond with considered reasons why you think this procedure was a bad idea in this case; you have offered none so far.
A couple of final details: I do not support the right of Jehovah's Witnesses to withhold blood transfusions from children, by means of exactly the same reasoning I advocate in Ashley's case: the consideration of the best interests of the patient. Children cannot autonomously choose to accept or reject life-saving treatment, but there is reason to believe they would accept it if given the choice as adults. (Not all children retain their childhood religious affiliation; some at least would likely not do so.) Presumptively treating them as children preserves their options until such time as they can make decisions for themselves; as adults, they're free to do what they want. Note that this has exactly nothing to do with "treating them as pets" or otherwise: it is grounded entirely in ordinary considerations of best interest and the locus of decisionmaking. Unfortunately for you, it also has absolutely nothing to do with Ashley's case: she will not later develop any desires of her own contrary to the presumed best interests her parents see for her, so overriding her parents' decision in order to preserve her personal decision-making opportunity is not an option in this case.
As for "slicing people up", do note that we do so all the time. Hysterectomy is a quite common surgical procedure. Short stature, I'm sure you'll agree, does not confer lack of personhood or other moral interests. So her parents have not actually done anything to her that we would object to in other, more normal, circumstances. That is not, I hasten to add, an endorsement of their decision. I merely point out that describing something with heated rhetoric is not an argument against it - it's just hot air. Ashley's parents' decision was indeed a grave and somewhat drastic response to her condition, but whether it is right or wrong depends on whether the benefits to Ashley outweigh the harms to her. That is an issue that can be discussed rationally and without assuming bad faith or hostile intent on anyone's part, and it is an issue that cannot be decided simply by presuming that anyone who takes the opposite position on it is some sort of monster.
Kevin said, "But characterizing it as treating her "like a common pet" is, I think, simply wrong."
Yeah Kevin, you're right they didn't treat her like a common pet. Because I have never heard of people remove their pet's uterus and breasts and giving the pet hormones so it will stay small. If someone did this to a pet we would call the ASPCA in heart beat, but here we do this to a human an it's OK.
They treated her worse than a pet.
I was just reading through the story and comments here after I saw the story on AOL. I had a feeling something like this would be discovered. Real investigations often turn up unethical or illegal activities perpetrated by people who supposedly are concerned about an individual's "best interests" and "civil rights".
I have to wonder what else Ashley went through that we may never know about.
To those who subjected this LITTLE GIRL to unneeded surgeries and invasive proceedures I qoute Stevie Wonder... "We are amazed but not amused by all the things you say you do..."
most particularly, my entire comment was about Ashley's best interests - not about those of her parents, nor about her parents as people.
Mine was too.
Let me ask you: How many times have you been personally sliced and diced, under the age of 12, say? How many surgeries were performed on you, simply because your body did not pass quality-inspection? Do you understand how frightening that is to a child? Do you understand that cutting up children is PAINFUL to the children? And they did this to a child to whom they CAN'T EXPLAIN anything to? FOR NO REASON????? And you think this unnecessary slicing and dicing (and the intense, accompanying pain and fear) is in her "best interests"???????
Since you think this is in her best interests, I trust you know all about what this feels like, since you experienced and it was done to you? How did you feel about that? Could you rate the pain from your various surgeries, on a scale of 1-10? If you didn't experience it, how about you STFU? I am not interested in your uninformed blather. You do not know whereof you speak, but the fact that you think you DO know, is evidence of your ableism. You would never comment on the lives of people living in East Timor (or would you?) and what they should do about XYZ, but you feel qualified to discuss disability rights and the lives of disabled children as if you actually know what you are talking about.
I really can't see how you could read what I wrote and think that it required a response aimed at "car[ing] about the parents", being "about Ashley's parents", that "they [the parents] rate your sympathy", or any of the other numerous references to them that you make in response to things I did not say.
Yes, you did say it: you write all about THEIR convenience, and have said nothing about Ashley's feelings, as I just did, above. Her feelings do not rate a single line in your two long-winded, know-nothing posts. Why not?
And you don't think the romanticization of "pillow angel" is all about THEM feeling good about themselves and their darling little doll? You think Ashley decided to be called a "pillow angel" and get her photo posted all over the net and used as a fucking poster child for gimp-neutering? Are you serious?
Not to be repetitious, but my point was simple: I think everyone can agree that the issue is to make the best decision for Ashley that is possible under the circumstances.
And you think unnecessary surgery and neutering her is good? That is my point: it isn't.
To do that, whoever has the authority to make that decision has to act out of regard for her legal and moral rights and her best interests.
Answer above questions. How many times did you have surgery as a disabled child again? How many times were you judged to have a "mental age" of blah blah blah? Not vague opinion derived from the Discovery Channel, please--direct experience as a disabled child?
And thus the questions arise: are her parents acting from these motives, and if so are they the best persons to make the decisions in question?
I would take her away from her parents, if I was king of the forest. We could do one of those "Idol gives back" shows, and decide who should raise her by calling a 900 number. Can't be any worse.
My suggestion was that, whether or not anyone agrees with their final decision, it seems apparent that her parents were acting in what they thought were her best interests.
As are the Jehovah's Witnesses. Yet you illogically write:
I do not support the right of Jehovah's Witnesses to withhold blood transfusions from children, by means of exactly the same reasoning I advocate in Ashley's case: the consideration of the best interests of the patient.
Who is to say the JWs are wrong--do you talk to God personally? You can't judge whether they are right or wrong, since they are talking about who goes to heaven or not. Yet, you claim to judge Ashley's parents as correct, when the JWs are saying the same things about their children: it is in the best interests of their children (to go to heaven). You simply disagree with the JW's criteria, and agree with Ashley's parents' criteria.
But if Ashley's parents can be trusted (according to you) simply because they love her, so can the JWs. If that is the criteria, you can't criticize the JWs. "They love their kids more than you do, so you can't judge."
It also seems apparent that they are best placed to act for her, since they know her best and have the greatest emotional bond with her.
And so do the JWs....their children even share their faith and often do not want the transfusions either, you realize? Yet, you would override that, yes? As I would override Ashley's parents, damned straight.
I don't believe children "belong" to their parents, like puppies. This is not pre-Industrial Revolution Great Britain... good God. Your values belong in a Dickens novel.
Carefully considering all aspects of the case and making the best decision for her under the circumstances is how we do go about respecting her rights.
Her rights can be respected by treating her exactly the way we treat OTHER CHILDREN. What is hard to understand about that? No children her age are capable of making "their own decisions"--so it's okay to do this to ALL of them, then?
And so, if you can stop calling people Nazis or pet-neuterers and such long enough to consider what they actually said and did, rather than your simply false and hyperbolic descriptions of what they said and did, you may see the situation as it is: two caregivers making a considered decision motivated by sincere concern for their daughter's welfare. That by no means makes their decision right, but it does make it a decision that should be taken seriously and considered on the merits.
Nope, I take a hard, unyielding line on this. I was the one cut up, like Ashley. I speak for her. You, and her parents, DON'T. You speak for your sorry-ass selves. Do not delude yourselves that she would choose or welcome pain and neutering in her life. And as Wheelchair Dancer wrote, how do you know she would not have had pleasures in her body and her own breasts?
How do we even know she has a supposed "mental age" of blah blah, whatever? Was she tested? By whom?
I don't believe anything her parents say. You do. Again, that is your able-bodied privilege speaking.
You need to have reasons and evidence for promoting or opposing certain policies; apparently you have chosen your policy without reasons and evidence and are now advocating it inflexibly for everyone, with anger as the only justification you offer.
My justification is: everyone has certain inalienable rights. You may have heard the phrase. I think Ashley should be regarded as EVERY OTHER CHILD. That is simple enough, isn't it? What is complicated about that? She is not being treated as other children are--she is being abused, cut open, sliced and diced to her parent's specifications. If any able-bodied child was sliced and diced and neutered like a dog, we'd be hearing about their arrest and see their mug shots on Fox.
You're welcome to respond with considered reasons why you think this procedure was a bad idea in this case; you have offered none so far.
Considered reason: this is something that is not done to troublesome able-bodied children, and I am opposed to treating Ashley any differently.
What is hard to understand about TREATING HER LIKE ANY OTHER CHILD?????????
And what are your "considered reasons" for finding slicing and dicing acceptable? Answer: The fact that the child is disabled. Period. You have no other reason.
Unfortunately for you, it also has absolutely nothing to do with Ashley's case: she will not later develop any desires of her own contrary to the presumed best interests her parents see for her,
Since she cannot communicate her own desires, we don't know this. You assume the very people abusing her are automatically aware of what she would want. This is all about THEM, as I said previously.
Speaking personally, I didn't speak for two years as a child, and I sure am glad people didn't decide my "desires" for me, during this time. I hope other kids not able to communicate aren't going to suffer as a result of this decision, but I know they will, which is why I get so angry. Who the hell are you people to decide anything for us?
As for "slicing people up", do note that we do so all the time. Hysterectomy is a quite common surgical procedure.
For children??? Are you serious??? When is it common to perform hysterectomy on children who have no pre-existing gynecological condition?
Short stature, I'm sure you'll agree, does not confer lack of personhood or other moral interests.
Is this natural short stature, or something imposed without her consent?
So her parents have not actually done anything to her that we would object to in other, more normal, circumstances.
So, I take it you are saying it would be fine if able-bodied children get the "Ashley treatment"? (Hmm, this is a novel idea, I don't think I have heard that one before.)
Cut the bullshit.
And BTW, you didn't comment on the fact that the parents are proselytizing and using Ashley as a poster child for gimp-neutering. This isn't only about her. Did you conveniently decide to omit that fact in your War-and-Peace length epistle?
We wouldn't be having this conversation about morality if Ashley was a non disabled child whose parents altered her body because it would be cheaper to keep her smaller. Her parents would be locked up and the key would be thrown away and the state would step up and provide care for Ashley. Its ridiculous that our disabled children don't have the same civil and common law rights as abled bodied children.
This issue will not be brushed under the carpet and forgotten about. Ashley needs a voice and the disability community will speak for her.
I haven't read the whole report yet, but based on just the part I have read, they (and Keith, here) are massively missing the point. The law isn't about protecting the ability to procreate, it's about ensuring that permanent and irreversible interventions aren't done to someone with no ability to consent without taking substantial steps to ensure that they really are in her best interest. Which her parents probably have at heart--but I can't think of any context, with a child with or without a disability, where I would think it's a good idea to give parents absolute authority over their child's body based on that assumption. The state requires that the child be represented by a neutral third party advocate before these kinds of interventions take place--which seems like a minimal but certaintly absolutely necessary requirement to me--and it's horrible that the hospital apparently chose to ignore that law before acting on her parents' wishes.
I apologize if the following was linked before, but it's really good and needs to be linked again:
Given a presumption premised on "love" rather than medical imperative, why not remove all her teeth to spare her the pain of cavities? Why not excise her fingernails to spare her the pain of accidentally scratching herself? Why not remove one of her healthy spare kidneys and donate it? -- that might make her and the world a little lighter. If I'm not the one who loves her, who am I to judge? That facile shrug allows us to ignore that Ashley's body was not altered to correct any physical need of her own but to address tenuous suppositions about long-term social pressures: She'd be more included in family events, she'd be less attractive to rapists (if not child molesters), she'd be more portable for the convenience of caretakers. Real medical benefits, such as lessened risks of cancers or appendicitis, were entirely speculative.
From: Quality of Life: Who Should Decide for Disabled People? By Patricia J. Williams
http://www.alternet.org/rights/49602/
I haven't read all the comments here yet, but I keep thinking back to the last several months and all the people everywhere who have said something like "How dare you question these loving parents?"
Which is an absurd thing to say, unless you accept that a child's developmental disability automatically places the parents beyond any reproach. I'm comfortable in saying that any defense of the parents that begins with saying no one has the right to judge them can be automatically rejected as obnoxious. This doesn't mean that I don't agree generally that loving parents are the best people to be acting on a child's behalf. And I don't really feel the need to question the devotion of Ashley's parents, just their judgment and actions. Well, and some of their justifications, which have changed a bit in the past few days.
In their recent statement they say "Sterilization is not the intent of the Ashley Treatment but a byproduct of it."
I find that sounds incredibly disingenuous given their original announcements that the treatment was designed to maintain their daughter's childlike body. On their website they state: "...given Ashley’s mental age, a nine and a half year old body is more appropriate and provides her more dignity and integrity than a fully grown female body." Granted, sterility is not the same thing as immaturity, but neither is being a child and being in a childlike body.
Mr. Soul:
To respond (somewhat) briefly:
I'm flattered by your persistent interest in my body. To satisfy you: I'm more or less able of body and mind, have never had surgery, and don't intend to shut up about any issue on which I think I can make a rational and considered contribution.
You allude, among your insults and bizarre rhetorical excesses, to the difference in perspective between the disabled and non-disabled. This is an important point. But you also seem to think that only disabled people can make decisions for disabled people, or that only disabled people can understand the issues relevant to making those decisions. That seems wrong. It's certainly wrong to imagine that only disabled people can discuss those issues in a rational, informed, and principled way. (Forgive me if I suggest that, on the basis of your posts alone, it seems that not even all disabled people can do so.)
As for my opinion on the treatment given in this case, I think you have misconstrued what I wrote in that regard as well as the rest of what I wrote. I have not expressed an opinion on that decision. I have said that I think the parents acted in good faith and in a way they thought would give their daughter a better life than otherwise, and that their decision was not rationally indefensible. I have also said that most of the criticism in this thread - yours in particular - did not constitute a rational argument against that decision. None of that is the same as saying I approved of it.
I have not written on Ashley's feelings, but I noted in several places that her thoughts and decisions in the case could not be decisive. That is the relevant issue here, from her perspective.
As to the final decision, I note again that you have nothing to offer but your pre-determined outcome: you are convinced the treatment was wrong, to the point that believing that seems to be your actual argument for believing that. But that is not rationally sufficient.
You have something that kind of sounds like an argument when you say that Ashley has the same rights as anyone else, and should therefore be treated the same as anyone else. But no one - not her parents, the ethics committee, her doctors, nor me - has denied she has the same rights. That is why there was an ethics committee, repeated consultations, extensive discussion, etc. The outcome may or may not have been correct - it may even have violated her rights - but, as a simple matter of fact, it was not decided upon without regard for her rights, and no one suggests it should or could be, or should be in any similar cases. As for treating her the same as others, of course she should be treated "exactly the way we treat OTHER CHILDREN", in all capital letters, too - if that means "giving her and all other children the best treatment for them particularly in their unique circumstances". If, when you say "this is something that is not done to troublesome able-bodied children, and I am opposed to treating Ashley any differently", you mean she must get exactly the same treatments as able-bodied children, that would be insane. She gets different treatments because her condition is different; to suggest anything other would just be willfully irrational. Your position cannot be taken seriously even if you turn out to be right that this was a bad decision - someone more rational, more coherent, and less willing to make inflammatory and indefensible claims will have to make your case for you, and so far no one has.
To finish: You do not speak for Ashley. No one can self-appoint themselves to demand treatment for another person to whom they have no connection. When a substituted decision-maker must be appointed, the obvious solution is to rely on someone with an emotional commitment to the patient; they are not guaranteed to be right, but they are at least likely to act out of their understanding of the circumstances, and not from some unyielding (your word) political stance aimed at the interests of other patients in other circumstances.
As for her parents' activism, since it seems to matter so much to you: I don't really understand why they have chosen to advocate this procedure generally, rather than just in their own case. I don't regard it as very important whether they do that or not. It is very important to make sure that every decision, in every case, is made as carefully and insightfully as possible. It's conceivable that this could be a useful treatment in some other cases; I would expect those cases would be rare but it's not out of the question. I don't see a reason to go creating a movement in that direction, but the important thing is not how or why people get the idea to do this, but that each case should be carefully reviewed before it is done.
Blue / thistle:
You're right that the oversight of the court review procedure for sterilization was a serious matter. But I think you're wrong that the purpose of the law was other than to protect procreative ability.
There is no provision for court review for any other kind of surgery - nor should there be: it would be a massive and possibly dangerous roadblock to treatment. (Requiring a court hearing for every treatment for every patient under guardianship would be a disaster - administratively, financially, and health-wise.) Sexual sterilization is singled out because of the history of past abuses of that kind, but it is singled out uniquely. Other forms of "permanent and irreversible interventions" are allowed, not without oversight but not with a requirement of a court hearing specifically.
Aside from the hysterectomy, the other procedures in this case are all of types that would normally fall well within the authority of a medical guardian to make - a process that usually works very well. This case raises questions because the justification for the procedures had more to do with the daily management of the patient than with her biological condition, but the treatments given were otherwise not unusual and the parents would otherwise have uncontroversially been the authoritative decisionmakers.
To satisfy you: I'm more or less able of body and mind, have never had surgery, and don't intend to shut up about any issue on which I think I can make a rational and considered contribution.
Do you not understand that I could tell this by the first sentence you uttered here?
Why do you suppose that is?
And I'm curious: if you are not disabled, or a pro-disability advocate, why are you here? As a troll? Devo? Future surgeon, trolling for ideas on how to make some money off of disabled children? Why?
have never had surgery, and don't intend to shut up about any issue on which I think I can make a rational and considered contribution.
This sentence is a direct outcome and result of what you have told us about yourself in your first sentence. Of course you do, you consider yourself a pretty important person. You know everything, don't you? Even though you haven't experienced any protracted illness, surgery or disability, you think you can come here and preach to us about what we have ourselves experienced, and you have not. You take that right utterly for granted, and assume your able body means you are superior. That is what able-bodied privilege is.
But you also seem to think that only disabled people can make decisions for disabled people, or that only disabled people can understand the issues relevant to making those decisions.
All kinds of people can make all kinds of decisions about all kinds of things. Means nothing.
Substitute CAN for SHOULD, and you have my position.
If, when you say "this is something that is not done to troublesome able-bodied children, and I am opposed to treating Ashley any differently", you mean she must get exactly the same treatments as able-bodied children, that would be insane.
Why? Have you never heard of a Guardian Ad Litem? It is pretty standard stuff for able-bodied children, or for such situations as the children of the Jehovah's Witnesses I mentioned. I notice you conveniently ignore that fact again. How many custody cases have you been connected with? The courts routinely decide what is correct for individual children, if their parents are deemed too compromised or biased to decide for them.
Also, you have ignored the question I asked in my last post (three times now) about the fact of Ashley's poster child status, and the intention of the parents to proselytize. If you're so big on "rational argument", why are you ignoring the crux of the matter and the whole reason the parents made this case public? You admit "you don't know"? (Then WTF are you doing here????) Well, I know, even if you don't know: They have guilt, and need to be assured by the masses that their child abuse was the right thing. Lucky for them, enough people hate gimps that they haven't had any trouble finding droves of people to tell them that they are good people to slice and dice their child. Like you, for instance.
I comfort myself by reading Robert Jay Lifton's THE NAZI DOCTORS: medical killing and the psychology of genocide, where I learn that lots of people once said the same things you are saying, over the same types of experimental surgery. And the truth eventually came out. Someday, I hope moral truth will predominate, and all children will be regarded as equal and not surgically tinkered with for our imperfections, as you believe we should be (if the reasons are "rational" to you--again, the exact same language the doctors in the Third Reich used.)
No one can self-appoint themselves to demand treatment for another person to whom they have no connection.
Listen carefully, genius, I am not "demanding treatment". I want them to LAY OFF. They are the ones demanding "treatment" for NO existing gynecological condition. They are the ones stunting her growth.
I AM: calling her parents and the doctors involved, wanton child abusers and I am calling you a child abuse apologist and crip-hater, possibly a devo or troll.
If you don't like that, chalk it up to my bizarre rhetorical excesses.
There is no provision for court review for any other kind of surgery - nor should there be: it would be a massive and possibly dangerous roadblock to treatment.
This guy is so clueless, he never heard of NOT DEAD YET, AUTONOMY, Elizabeth Bouvia or Terri Schiavo. And he has the balls to post here anyway! That, my friends, is some serious able-bodied privilege. I read in awe.
If yall wanna find me, I will be over on the water-skiing and mountain-climbing blogs, telling those idiots HOW IT SHOULD BE DONE. And they better listen! ;)
Kevin Keith Partridge writes:
Aside from the hysterectomy, the other procedures in this case are all of types that would normally fall well within the authority of a medical guardian to make - a process that usually works very well.
Stunting a child's growth? Mastectomies of healthy breasts? Excessive doses of hormones that may itself cause cancer? These
are normal procedures for a child?
Huh?????
A little late to the party, but... If they consulted a disability lawyer, it appears that that lawyer gave them some bad advice...
What would the time, billable hours and money have been to *file that court order correctly?*
Dumb Lawyer. Dumb Lawyer should have said, "Let's cross our T's and dot our eyes and file the darn thing."
Since he didn't, this appears to underscore an uneasy sense that this was more about convienience than the parents either realize, or want to admit.
I'm against what the parents did...profoundly so, but I'm not judging motives...
I don't understand how the parents can possibly miss the point that this is a precedent it *isn't safe to set.*
They're ignoring the need for oversight that Penny mentioned, and ignoring the can of worms that is opened about cognitive ability....
Who decides *when* a patient has enough cognition to oppose this sort of treatment?
The doctor either singly or as an ethics panel?
The parents?
The Insurer? (snark)
Whatever...
Keith, actually, a court order is required in other circumstances and for other types of surgery beyond hysterectomies in cases like these. The report notes that the state's Supreme Court has held that a court order is required when parents seek to sterilize their children with developmental disabilities, and that the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual's best interests. It also notes that Courts have limited parental authority to consent to other types of medical interventions that are highly invasive and/or irreversible, particularly when the interest of the parent may not be identical to the interest of the child. So, it suggests, other aspects of what was done to Ashley should require similar independent court evaluation under these circumstances. Finally, it notes that what happened raises discrimination concerns. All of which is, I think, entirely true. Can you really, possibly think that a parent should be able to request, and have performed on their child, any surgery that they want? Even if it's not in any way medically necessary for the child? Or do you think, as I have to suspect, that only parents of disabled children should have that ability?
Blue lily wrote:
I find that sounds incredibly disingenuous given their original announcements that the treatment was designed to maintain their daughter's childlike body.
Not to mention their original announcement that one reason for the hysterectomy was to protect her from pregnancy as a result of rape.
(Sorry to go on so long)
The other thing I would say is that I wouldn't necessarily expect the parents to know about the legal rules around this. But the hospital? How the fuck did the hospital think it was okay to rely blindly on the opinion of the parents' lawyer? How did the hospital not know the rules or feel any need to independently find out what they were?
Blue lily wrote:
I find that sounds incredibly disingenuous given their original announcements that the treatment was designed to maintain their daughter's childlike body.
Thistle:
Not to mention their original announcement that one reason for the hysterectomy was to protect her from pregnancy as a result of rape.
Am I the only one who thought that justification was kinda creepy?
MrSoul, beyond "kinda" creepy, I thought.
MrSoul: Am I the only one who thought that justification was kinda creepy?
Copied from a reply I wrote in my LiveJournal (http://ras2883.livejournal.com):
Also, while removing her uterus will indeed prevent her from becoming pregnant if she is raped, she can still be raped.
The parents' statement amazes me. The entire purpose of the law that was violated is not simply about "voluntary procreation," as I understand it. It's about doing things with people's bodies when they cannot themselves give consent and protecting against that. I'll have to read the Washington law more closely to see if there are nuances to it I don't know about, but to summarize the purpose of legal safeguards against involuntary sterilization as protection of "voluntary procreation" as they have really misses the point.
I said this in the comments above, and while I'm still not clear on the actual, complete purpose of the Washington law that was violated, I stand by the belief that "voluntary procreation" is an incredibly simplistic -- and typically patriarchal -- way of looking at the rights to not have a hysterectomy when there is no current health threat to keeping her body parts. A man who does not plan on having any more children has a right to keep his testicles (just because they're his) without it being framed as just being about procreating. Nevermind the fact that total removal would be overkill when a vasectomy is available.
It's worth remembering that institutionalized and/or disabled women were subjected to hysterectomies in the past for various reasons. To sterilize them, yes, sometimes; but also to "calm" them--the theory was that just having a uterus, a healthy functioning uterus, could make some women irritable, irrational, unhappy, etc. (Some people still believe that, it seems.) A third rationale was prophylaxis -- especially when cervical/uterine cancers were more difficult to detect, some doctors thought all women past a certain age should have hysterectomies, just in case. (See below.) An older journal article documenting this:
Pauline B. Bart, "Social Structure and Vocabularies of Discomfort: What Happened to Female Hysteria?" Journal of Health and Social Behavior 9(3)(September 1968): 188-193.
Bart quotes one mental hospital psychiatrist she interviewed as saying that he thought all women over 40 should have prophylactic hysterectomies.
A fourth rationale that was used for gynecological surgeries performed on women and girls who could not give consent was, frankly, experimentation. The "founder of modern gynecology," J. Marion Sims, perfected his surgical skills on enslaved women in the antebellum South. (The Anarcha Project is one current project dealing with this history and its legacy.) We know institutionalized children and adults were the subjects of medical experiments in the 20th-century US. (And elsewhere, obviously.)
I presume the state law was written to prevent all unethical hysterectomies, no matter what the rationale. Such laws weren't written just to make paperwork and "burden" families; they were written to address real, rampant abuse and injustice, with a real history.
Coming in late on this - and how sad yet expected is it that while WPAS finds the whole incident a violation of Ashley's due process rights *and* discrimination based on disability, these very important findings are merely a postscript that many who followed the initial uproar will be unaware of?? These findings need to be shouted from the rooftops if for no other reason than to make sure it does not happen again.
I think the worst part of this is that Ashley's parents and their supporters continue to deny that their daughter has any rights whatsoever. As I read their statement, they seem to be saying that those who may very well be most in need of protections under the law should be, in their opinion, exempt from those protections. Shall we all take some standardized testing to determine what percentage of our constitutional rights actually apply based on our level of ability? Do I lose 1% because I wear glasses? Does my son lose 100% because he can't walk, talk, or see? I also can't help but taking offense at terms like "grave" "serious" "medical condition". The girl has *static* encephalopathy - she wasn't hemorrhaging, she was growing. Last time I was in my living room (where my 18 yo is watching/listening to TV with his siblings), static encephalopathy didn't look terribly grave or serious. Their skewed thinking makes me nuts - not too burdensome to find an accommodating atty to sign off on an illegal procedure, but too burdensome to go to court to make sure that they truly were acting in her best interests??? Sheesh...
Post a Comment