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?
I can’t sum it up any better than to keep repeating the same mantra: “fixing” the inherent troubles with a mentally disabled child may come in many packages – but none should be at the expense of the child – by removing their healthy organs and altering their physical bodies in such a radical fashion.
I see a lot of people suggesting how awful it would be for Ashley to not have been carried by her parents because of how joyous it makes her. And aside from the selective abilities her parents seem to ascribe to her when it’s convenient, I sure don’t recall anyone suggesting the doctors remove the pleasure centers of Ashley’s brain so she doesn’t feel sadly when she’s not carried.
After all, wouldn’t that be for Ashley’s good? Why not just remove the part of her brain that associates pleasure and sadness? That way she couldn’t have suffered from the inability of her parents to carry and snuggle her.
Sound ludicrous? Maybe, but more so than removing her healthy organs?
Because it’s so much safer to do brain sugerie than take out a uteris. GMAB
You are the reason rational conversation is so painful. You are the reason I can’t stand forums. Are you hear to truely disscuss and combind efforts on this topic or just vilify people who don’t agree with you and post insaine alternate plans.
IMO there is a HUGE difference between removing a uteris that will never be used and it’s a proceedure commonly done, Than removing a piece of a child’s brain being used and most likely never done. The comparison is pretty laim.
Kim said, “Here’s the problem. It’s never gonna change so we (as parents) have to help our children and ourselves.”
It’s definitely not going to change with that attitude. I’m as disgusted and sick of American politics as the next person, but I know one thing is for sure. You can’t change the status quo if you don’t believe it CAN change and don’t try. However, history tells us the status quo CAN change if enough people scream loud enough.
Well I’ve been screaming for 11 years , if you know something I don’t ….
Please share.
Jane,
Here’s what it comes down to for me —
Will Ashley ever comprehend that anything was done to her, or are the people opposed to her treatment the only ones who will ever object?
Would Ashley ever be able to consent to be treated? Would she ever be able to understand the pros and cons of being treated?
Would a momentarily-cognitively-functional Ashley choose to have her body altered to make it easier for her to be cared for given the alternative?
I don’t think that Ashley possesses the cognitive skills to comprehend much of anything. That’s what having the mind of a 3 month old is like. Three month olds pretty much exist in a world involves being hungry, being wet and wanting to be held.
I don’t think Ashley has, or ever will have, the cognitive skills to understand basic arguments in which the pros and cons of this treatment would be outlined. Since she cannot give her opinion either way, I think it’s reasonable to allow the parents to make that decision.
I don’t think that a person who is aware that failing to be made less burdensome on ones parents could result in being put into a nursing home is going to choose to retain useless body parts. Knowing how much people who go into nursing homes resist going into one, I think it’s a safe bet that a person who’s likely to wind up in one if they don’t make some basic life changes is going to choose to make those changes.
You want better medical care. Maybe this is “better medical care”. You’ve got this “sanctity of the useless uterus” thing going. Let’s quit calling it a uterus, because it will never function in the way a uterus is primarily designed to function. Menstruation isn’t just a way to lose blood once a month, it’s a biological process that prepares the uterus to become pregnant, something Ashley will never do, and if, G-d forbid it happens to another girl in her situation, wouldn’t have been something she consented to have happen to her. Let’s call Ashley’s (former) uterus what it really would have become — a week long, monthly bloody mess maker. Unless there is something I don’t know about being a full-sized adult, permanently confined to bed, let’s stop pretending that being a full-sized adult has the same meaning for her. Let’s call the meaning of her (no longer possible) full-sized body what it is — an affection deprivation body.
When I read rant after rant of yours — and everyone else in every other thread just like it — I come away with the same thought over and over. You either want to punish her parents for having a defective child, or you want to use her to extort “better” medical care from the government.
I think the doctors who approved this treatment are on to something. I’ve noticed that people who lose limbs to industrial accidents get new, high-tech limbs, controlled in creative ways by nerves located wherever they are found. But if someone has a severed spinal cord, they are stuck in a wheelchair with limbs that will never work. I want to know why doctors aren’t doing for paraplegics what they do for victims of industrial accidents. How come someone who loses their arms in an industrial accident can get new arms, but a quadriplegic gets nothing? The only reason I can figure is that doctors don’t want to cut off “healthy” limbs. Except that like Ashley’s dearly departed uterus, those limbs aren’t useful. They only serve to make the individual even more dependent on someone else.
I was looking at the famous George’s blog and noting that there was just one or two very positive (pro Ashley ‘treatment’) I wrote back as below; surprised to see it up there and also to get a response from George Dvorsky.
Samantha said…
I notice that the ‘posts on this blog overwhelmingly’ have probably been moderated, and suggest that the opinions that people have voiced are probably negative and therefore are not aired.
I am the parent of two children with disability and I disagree entirely that dignity and human rights are dependent on cognition or awareness. I feel for parents of children with disability but not as much as I feel for the children themselves. Your comment about the inappropriateness of Ashley’s cognition in relation to her body was inexcusable and a grievious slight to all persons with disability.
I suppose I am writing to myself, as I doubt this comment will be ‘moderated’.
Samantha
8:51 AM
George said…
Hi Samantha,
Thank you for raising the issue of moderation. FYI, I moderate the comments section of this site to prevent spam. So long as the comment is contextually appropriate, unabusive and non-trolling, it most certainly will get posted. I treat the comments section very seriously and feel it serves an important purpose, namely that of a public forum.
If, btw, you’re finding that most posts are sympathetic to my perspective, please keep in mind that it may be a selection effect (ie my site draws a certain readership) and that recent polls are showing as much as a 60% approval rating for the ‘Ashley Treatment.’
As for my remark about “the inappropriateness of Ashley’s cognition in relation to her body,” I am becoming increasingly sympathetic to this criticism. As an advocate of neurodiversity and morphological freedoms, I believe no one should prescribe a certain body to fit with a certain mind.
That said, the purpose of the comment was purely intended to add some perspective and relativity to Ashley’s condition. Given another opportunity, I most certainly would have worded it better.
Was that a ‘shit, I shouldnt have said that?’
Furryfelinerounderupperer (what the hell is that nick about?) In response…
Will Ashley ever comprehend that anything was done to her, or are the people opposed to her treatment the only ones who will ever object?’
Nobody knows what level Ashley will be able to comprehend and on what level. Will she object? Probably not. She doesnt have a voice. Thats why it is important for others to object on her behalf, and on behalf of all people with disability.
‘Would Ashley ever be able to consent to be treated? Would she ever be able to understand the pros and cons of being treated?’ No, and as above.
Would a momentarily-cognitively-functional Ashley choose to have her body altered to make it easier for her to be cared for given the alternative? Rhetoric – how could you answer that? That is a very big ‘what-if’. However, she currently does not have that ability and there is not a probability that she will develop momentary cognition. However, she has no choice.
‘I don’t think that Ashley possesses the cognitive skills to comprehend much of anything. That’s what having the mind of a 3 month old is like. Three month olds pretty much exist in a world involves being hungry, being wet and wanting to be held.’ Sure do. But they are human, and we have no right to devalue their humanity by butchering them. Or is a three month old less than human?
‘I don’t think Ashley has, or ever will have, the cognitive skills to understand basic arguments in which the pros and cons of this treatment would be outlined. Since she cannot give her opinion either way, I think it’s reasonable to allow the parents to make that decision.’ Basing value of life on cognition and intellect. Do you also think it would be ‘more humane’ to allow mercy killing for Ashley?
‘I don’t think that a person who is aware that failing to be made less burdensome on ones parents could result in being put into a nursing home is going to choose to retain useless body parts. Knowing how much people who go into nursing homes resist going into one, I think it’s a safe bet that a person who’s likely to wind up in one if they don’t make some basic life changes is going to choose to make those changes.’ I don’t even know what that *means*. Could you be clearer? You are basing this on something that, as you pointed out, Ashley does not currently have. That is the thought processes that involve making a life decision. At the moment her parents ‘cant be sure she recognises her’. She has no voice, and no capacity to make her own decisions; that is why it is so important that human rights are the benchmark for her care, not just peoples ideas of ‘what is best for Ashley’.
‘You want better medical care. Maybe this is “better medical care”. You’ve got this “sanctity of the useless uterus” thing going. Let’s quit calling it a uterus, because it will never function in the way a uterus is primarily designed to function. Menstruation isn’t just a way to lose blood once a month, it’s a biological process that prepares the uterus to become pregnant, something Ashley will never do, and if, G-d forbid it happens to another girl in her situation, wouldn’t have been something she consented to have happen to her. Let’s call Ashley’s (former) uterus what it really would have become — a week long, monthly bloody mess maker. ‘
Very nice. I doubt you have any idea of what a hysterectomy entails for any age woman. The ‘week long, bloody mess’ (gee, the feminists must love you) is a physiological process which entails very little. In some cases, granted, people will experience menstrual symptoms – but generally the carer will be presented with not a lot more mess than caring for a person who is incontinent.
‘Unless there is something I don’t know about being a full-sized adult, permanently confined to bed, let’s stop pretending that being a full-sized adult has the same meaning for her. Let’s call the meaning of her (no longer possible) full-sized body what it is — an affection deprivation body.’ Pardon me? Refer to your above statements about Ashley’s cognition. She is unlikely to identify that she is smaller and more ‘portable’. It is possible to hug and care for a full sized person with a disability. Ask any parent of a child with a disability.
When I read rant after rant of yours — and everyone else in every other thread just like it — I come away with the same thought over and over. You either want to punish her parents for having a defective child, or you want to use her to extort “better” medical care from the government.
Your lack of knowledge is coming through, and also your ablist bias. There but for the grace of God go you for not (I assume) having a ‘defective child’. I would like to say how dare you. I have two ‘defective’ children, and four ‘normal’ children. I do not make distinctions between the two. What a revolting comment. Extort ‘better’ medical care? Can you read? Have you read Kim’s remarks above? I would argue that the above ‘rants’ by Jane contain very few disrespectful comments to persons with disability, whereas it is obvious where your sympathies do not lie.
I think the doctors who approved this treatment are on to something. I’ve noticed that people who lose limbs to industrial accidents get new, high-tech limbs, controlled in creative ways by nerves located wherever they are found. But if someone has a severed spinal cord, they are stuck in a wheelchair with limbs that will never work. I want to know why doctors aren’t doing for paraplegics what they do for victims of industrial accidents. How come someone who loses their arms in an industrial accident can get new arms, but a quadriplegic gets nothing? The only reason I can figure is that doctors don’t want to cut off “healthy” limbs. Except that like Ashley’s dearly departed uterus, those limbs aren’t useful. They only serve to make the individual even more dependent on someone else.
Again, this is the argument of meatheadedness. Let me explain it to you succinctly. The quadruplegia argument is faulty. In most cases of that kind of injury, the spinal cord has been damaged to such an extent that the nerves communicating with the upper (as well as lower) limbs are impaired. Putting ‘new arms’ on a nonworking body serves nothing unless the person still retains the muscular and nerve infrastructure to make it work. You know what? Conscientious doctors *dont* like cutting off healthy limbs. Nor removing body parts for arguable reasons.
I am deeply offended by your comments about people with disability. Please think about rephrasing what you write in future. We ‘defective’ people don’t appreciate being rubbished.
Sam,
I herd cats for a living. It’s a hard job, but someone has to do it.
Last points first — the technology exists for a person to have two working arms, complete with working hands even if the only working nerves and muscles are above where a C4 fracture would occur. That’s a technological fact. Why it isn’t also a medical fact, who knows, but I bet that doctor’s reluctance to allow engineers to have a crack at improving life has a lot to do with it. At T1, the possibility of having assistive technology for leg movement increases, though the risk of severe fractures in the legs in the event of an accident is relatively high, but only assuming one still has their natural legs. Further down the spine, but still long before leg function returns to normal, the amount of assistance required decreases, but with increased nerve function the ability to provide it increases dramatically. Again, these are technological facts and there’s no reason they shouldn’t also be medical facts. Just because the pathway between the upper body and lower body has been severed doesn’t mean the signals can’t be gotten there. It’s just electricity, yanno. Some of us cat herders are really clever when it comes to working with electricity.
I’m all for looking at the rights of people who have some form of disability. But I don’t think that disability rights means that people who are blind should be allowed to drive cars just because people who aren’t blind are potentially able to drive.
What about Ashley’s rights? Do you really believe she has the cognition required to ponder such a thing? Not, “She had a C3-C4 spinal cord injury and is mentally alert and has age-appropriate cognition”, but “Will have the mental capacity of a 3 month old from now until the end of her natural life”.
“Rights” are an abstract social construct, they aren’t some kind of absolute. We, as human beings, get to decide what “rights” means. It isn’t carved in stone that someone has a “right” to grow into an adult body, complete with all the problems associated with an adult body. We can decide that Ashley’s “right” to be cared for by her family, to be shown affection, to be a part of the family without the use of hoists and lifts and other dehumanizing machinery (car engines get lifted by hoists, thank G-d I was able to pickup my child with my own hands). And we can decide that the right to be shown affection and to be cared for by her own family and to be a part of her family’s activities is more important than her “right” to have body parts that will prevent that affection and involvement.
This discussion isn’t even navel-gazing for Ashley. If we had this discussion in front of her I’d wager that her reaction would be to cry because she’s being ignored. For that matter, if we had a discussion about petunias or the merits of beans in chili she’d have the same reaction. Or if we talked about whether to paint her bedroom lavender or lilac instead of decorating it with Disney characters she’d have the same reaction. On the other hand, if we stopped having this discussion, played with her, showed her affection, picked her up and held her, carried her to the car and drove her to a park with her siblings, I bet she’d perk right up. It’s because of that that I believe her parents have the right to make decisions which will allow all of that to happen.
Jane, if I’m reading you correctly, your argument is this:
1. Ashley’s parents made a horribly wrong decision in going with the Ashley Treatment for their daughter.
2. They made this decision because they were overwhelmed by the burden of caring for Ashley and her siblings.
3. If Ashley didn’t have any siblings, they wouldn’t have decided to use these invasive medical procedures on her.
4. Therefore, they were stupid and selfish to have more children after Ashley was born because that decision led directly to the Ashley Treatment. If they had decided against using the Ashley Treatment, then having additional children was totally OK.
And my argument, by contrast, is:
1. The Ashley Treatment is horrible, but I think the parents tried to make the decision in what they thought were her best interests.
2. Like many people, they thought they could handle more than they actually could, so it wasn’t until they actually had more children that they figured out how stressful it would be. This isn’t selfish, although it might be stupid.
3. Having read their website, I think they probably would have gone with the Ashley Treatment regardless of how many children were in the family. (Not explicitly stated by me on this thread: because they have issues with a baby’s mind in a female adult’s body.)
4. The supplementary benefits of making the caregivers’ burden easier and the financial burden easier may have made the decision significantly easier to make, which really bothers me.
I believe it was a, “I could have said it a much more appropriate way.”
Maybe he will think before he speaks next time.
Wow, I don’t know where to start. I have never posted to a blog and never had the urge to. This issue and the choices these parents/doctors made bother me on soooo many levels, I can’t keep quiet. There are so many flaws in the logic used to justify the assault against this child, I am floored. And what on earth is a Pillow Angel? This is a person, not a collectible doll!
Circular Logic: Her parents claim to have done this to improve her quality of life. Yet state she is so disabled that she falls outside of the laws preventing forced sterilization and has so little cognitive ability she doesn’t even recognize them. Her doctors are sooo sure that she will never be able to do anything for herself, then what makes them think that she knows or comprehends her quality of life at all? How can they be so sure that she is not able to comprehend what’s happening to her? Doesn’t their justification negate itself?
Comparing Apples to Oranges: If they believe she will be able to comprehend that her periods are painful, isn’t she also able to comprehend that surgery is painful? If so, are they seriously saying that surgery is less painful than periods? I have had surgery and I have periods, there is no comparison!
Mental Mind F**K: In “Interview with the Vampire” Lestat created a child vampire, eventually her mind grew up, but her body didn’t. When she finally figured this out, she freaked out and tried to kill him. I realize this is a work of fiction and it’s not likely Ashley will wake up one day and think she should kill her parents for making her into a perpetual child, but it’s still a good point to consider. Is it possible that she will eventually comprehend that she has the body of a child, forever? What would that do to her?
Breasts Cause Sexual Abuse: They cited prevention of sexual abuse at the hands of her caregivers as a justification for removing her breast buds, thus preventing her from growing breasts at all. Yet they claim all of this was done so they could continue to care for her at home. If they are her caregivers and they want to prevent her from being sexualized to her caregivers, do they not trust themselves not to be sexually tempted with their own daughter? I think they stated it correctly, they can’t bear to think that their daughter will some day be a woman. Or did they just miss the memo that babies and very young children are raped and molested all the time. It has nothing to do with their breasts, it has to do with predators looking for weak, small, helpless victims. Oh exactly what they have made their daughter into.
Whoops We Got that One Wrong: Doctors and medical experts have been wrong before. Everyone knows of someone who was told they wouldn’t live more than a month or would never walk again or could never have children (insert whatever never here) only to prove their doctors wrong and live long lives, standing on their feet with a couple of kids. My own mother was told not to have me or she would surely die and I would most likely die or be deformed. I am here and I assure you, I have all my parts and peices. She surely died alright, 32 years later of lung disease!
A Meaningful Makeover: I have always been super super super pro parents’ rights. Too many choices are taken away from parents by a government, education system and medical establishment that believes they know far more what is best for our children than we do, but in this case I would have to say this child needs a third party protector. Obviously, although many parents do have their children’s best interests at heart and the good sense to make reasonable decisions, it’s clear that some parents will fall for any crazy thing their doctor tells them or whatever is most convenient for them. Then they will work hard to find justifications that sound reasonable to others in order to make themselves feel better.
Boy/Girl, Whatever: This whole situation screams of the same ignorance and blind following of supposed experts that led Bruce and Brian Reimer’s parents to raise their son as their daughter Brenda. Dr. Money was a supposed expert in gender and sexuality. Well intentioned and well educated doctors participated in that medical disaster. Their parents wanted the best for their children, but couldn’t imagine a boy could be happy without a penis. Let’s hope that Ashley doesn’t come to the same tragic end. Bruce/Brenda and later known as David killed himself a few years ago. That makes me cry.
Me, Myself and I: I have kids, thankfully they are all healthy. I can’t even try to say I know exactly what I would do with the same situation. My heart goes out to all parents as we make tough decisions that affect the health and welfare of our children. But I can say this: if I chose drastic medical/experimental means to make caring for my child easier, I would at least be able to call it what it is. MY choices, made to make MY life easier, in dealing with a VERY difficult situation. I wouldn’t try to justify it with circular and flawed, utter BS.
OK I am done ranting. Thanks for reading.
And on a shorter note:
Ditto Ditto : )
1. Am surprised at the number of posters here who blow off menstrual cramps as “oh, just take a few Advil.” Like heck it’s that easy. For a lot of us it’s several days of screaming in pain. And for me, Advil has never worked. What’s all this enshrinement about menstrual cycles?
2. For those who worry about the pain of operations vs. the pain of monthly menstrual cycles (see note 1. above), mammograms, etc.: uh, they usually use this thing called anesthesia during surgery….
3. What it boils down to is the parents have the choice, not us. We can fret and fume and post, but Ashley’s care is in the hands of her parents. They seem to have gotten the OK from a medical board of ethics–how else would we want this decided, keeping in mind that any procedure we come up with will be applied to any other case of tricky parent-child medical decision?
4. Someone up above claimed that Australian Aborigines have no word for “disabled”. Um, maybe because they died off first? The Outback isn’t all that hospitable. Let’s not forget that until relatively recently in history a child such as Ashley wouldn’t have survived very long.
Ashley has had her uterus removed, not ovaries. She is not sterile.
“4. Someone up above claimed that Australian Aborigines have no word for “disabled”. Um, maybe because they died off first? The Outback isn’t all that hospitable. Let’s not forget that until relatively recently in history a child such as Ashley wouldn’t have survived very long. ”
That was me. Um, you ever been to Australia? Indigenous people are about three percent of our diverse population, sorry to disappoint you. You may also not be aware that the word ‘disability’ as we understand it carries many connotationsl; most disabilities do not kill you. Disease and medical conditions were responsible for taking the lives of (prewestern) Aboriginal people – others were looked after by their families without any apparent acknowledgement of their differences. Hence the above quote. (I have heard some ‘outback’ indigenous people account for disability by saying that the reason for their disability was because their ‘mother had stepped on a goanna’ and other lore, but that is it).
Other people in the family carry the family member, if necessary, on their backs; bring them food and tend to them without any fuss. In western civilisation, in our current Aboriginal society, Aboriginal people rarely ask for assistance from disability agency, preferring care from extended family.
A child like Ashley would almost certainly have died in outback Australia or any other primitive civilisation without modern technology. That wasnt the discussion. It was about the way people with disabilities are viewed, and whether their human rights should be invalid because of their disability.
Good blog by a disabled scholar, or ‘angry cripple’ as he calls himself here. http://www.counterpunch.org/peace01182007.html
Sensible man.
Furrycatherder writes:
“I’m all for looking at the rights of people who have some form of disability. But I don’t think that disability rights means that people who are blind should be allowed to drive cars just because people who aren’t blind are potentially able to drive.”
-That’s the WRONG analogy. The accurate analogy in Ashley’s case is to say that because someone is blind anyway, then it’s okay to remove their eyeballs ’cause they won’t need them.
Ashley’s disability shouldn’t give her parents the right to have the healthy organs they deem unnecessary and inconvenient removed. But you don’t get that. You see her as a couch that doesn’t fit into the apartment – so you hack off the arm and shorten it to make it work for your family. Well, newsflash: Ashley happens to be a human being. And if her arm gets in your way, removing it is a terrifying answer.
You could wind up the victim of a severe stroke someday and it may be far more convenient for your family (or even for a nursing home) to remove your legs so they can lug you better. But humans aren’t furniture – they’re not property. If their healthy organs are bothering you, the answer isn’t to remove them.
I’m sorry your narrow focus of a quick fix for function makes the idea of human dignity incomprehensible to you.
Original Lee writes:
“Jane, if I’m reading you correctly, your argument is this:
1. Ashley’s parents made a horribly wrong decision in going with the Ashley Treatment for their daughter.
2. They made this decision because they were overwhelmed by the burden of caring for Ashley and her siblings.
3. If Ashley didn’t have any siblings, they wouldn’t have decided to use these invasive medical procedures on her.
4. Therefore, they were stupid and selfish to have more children after Ashley was born because that decision led directly to the Ashley Treatment. If they had decided against using the Ashley Treatment, then having additional children was totally OK.”
-I never said that #3 was the case but I have stated that having more children is ALWAYS going to cause a greater burden of time and money on a family, yes. Even if you’re extremely wealthy, having more children will always cost more and will need more of your time.
However, I NEVER said that the Ashley Treatment wouldn’t have happened if they’d not had more children – they may still have done it; we will never know. Convenience and financial considerations were made for the Ashley Treatment (and the parent’s blog notes as much) so REASON would dictate that those factors only increased when they had more children.
-#4 is NOT what I have said. IF having more children led to the Ashley Treatment then yes, it is disgusting. As for it being “ok” to have other children – how many times do I have to say the same thing?! They can have 63 more kids, I don’t care and it’s perfectly fine – AS LONG as maiming your mentally disabled ones isn’t the solution for a more convenient and cost-efficient life.
Kimberly Anderson writes:
“Because it’s so much safer to do brain sugerie than take out a uteris. GMAB
You are the reason rational conversation is so painful. You are the reason I can’t stand forums. Are you hear to truely disscuss and combind efforts on this topic or just vilify people who don’t agree with you and post insaine alternate plans.
IMO there is a HUGE difference between removing a uteris that will never be used and it’s a proceedure commonly done, Than removing a piece of a child’s brain being used and most likely never done. The comparison is pretty laim.”
-Okay Kimberly, I’ve read enough personal jabs from you so you’ll understand where I’m coming from now.
1. I get it Kimberly. You have a handicapped child in Ashley’s situation and life sucks for you because of how difficult it is to handle that child. Between the government helping financially and the emotional drain – believe me, I get it.
2. I bothered to actually read your site and see pictures of what I can only describe as a very beautiful child and you are to be commended on how well taken care of she appears to be.
3. From early on, you learned your fetus would have no cognitive ability and at that time all you did was pray that God would allow her to live; that you didn’t care what condition she was in.
4. Well, God answered your prayers Kimberly. She lived. Did God give you the green light to hack off some healthy organs and shrink her so life would be easier for you? Was that part of the deal? If not, then I’m stunned that you continue to say you wish you’d been able to perform the Ashley treatment on your child. Doesn’t any part of that seem extremely ungrateful and disingenuous of you? I mean, wouldn’t God be scratching his head thinking….Gee, I thought she told me she didn’t care how bad off the child was, that she wanted her no matter what?
We are best served by acting responsibly and owning our decisions.
In the U.S., no one is forced to give birth to a child – abortion is perfectly legal. If you’re alerted to your child having a severe handicap and you don’t know if it’s something you can handle, then you will have to make that VERY DIFFICULT decision. If you decide to keep the child, then do it – keep them, love them, protect them – and don’t scramble to find a way to make life easier by hacking them up later. Seems terribly contrary to the purpose for having had them in the first place.
None of us are infallible and although we can’t predict how much more complicated a commitment may later be than what we ever imagined, the solution simply cannot lie in altering other human beings to make up for our own misjudgment.
Grumpy realist writes:
“1. Am surprised at the number of posters here who blow off menstrual cramps as “oh, just take a few Advil.” Like heck it’s that easy. For a lot of us it’s several days of screaming in pain. And for me, Advil has never worked. What’s all this enshrinement about menstrual cycles?
– if you’re literally quote: “screaming in pain” from your menstrual cycle, then something is terribly wrong and you should see someone. That is NOT NORMAL or COMMON and no one should assume so.
I was recently in a restaurant where a family had a boy (appeared to be about 14) who yelled out every so often. People starred. If you paid attention for a minute you could tell that the yelling was uncontrollable and part of a greater condition. I wonder how many people thought the family either :
1) had a noisy kid that needed discipline to learn to be quiet in public,
2) shouldn’t go out in public because their kid would disturb others,
3) in light of the logic behind the “Ashley Treatment” would think it was perfectly acceptable to remove the kid’s voicebox since afterall, he didn’t need it.
Scary thought. We all better make sure that we have “uses” for our body parts!
Exactly right BigScaryLion. I’m sure, given another couple of years, Ashley’s parents can come up with several other organs she doesn’t make use of and can build a case for removing them too. And by no coincidence will you find that removing them was also of tremendous benefit to her family.
At least let’s denounce the hypocrisy – call it for what it is. Ashley didn’t care if she had breasts or some blood exiting her body once a month any more than she cares about her other normal bodily functions. Those who do seem to care is the ones whose workload increases by those functions.
Very frightening what’s on the horizon.
I’ve been following the debate on this site since it started. Both sides have made very good points and made intelligent and reasonable arguments. Jane, I count you among the posters who have done so. But I believe you’re doing yourself and your arguments a disservice by continually implying that if people disagree with you, it’s because they are insensitive, selfish, and generally morally inferior to you … or that they’ve taken too much of “Mein Kampf” to heart, whatever. You attack the people, and not the arguments they’ve made.
You wrote: “If you decide to keep the child, then do it – keep them, love them, protect them – and don’t scramble to find a way to make life easier by hacking them up later.”
Do you really think that people like Ashley’s parents and Kimberly are “scrambl[ing]” to help themselves “by hacking up” their children? You believe that Ashley’s parents made the wrong decision, and that’s a valid viewpoint. But isn’t it possible that they really did make that decision out of concern for their daughter? It simply seems wrong to me that you should accuse they – who are perhaps among the more selfless people in the world – of selfishness.
Jane, you haven’t convinced me of anything except that you feel very very strongly about this issue. For you, it does seem to be that there is an Obvious Right and and Obvious Wrong decision on this. For others of us, we’re not so sure and see more of a balance of rights which have to be weighed. We’d like to have our doubts considered and not immediately dismissed as idiotic thinking.
And–as mentioned above–it’s not your decision to make. It’s Ashley’s parents, and they’ve decided differently. Simply because they’ve decided differently is no reason to assume that they haven’t carefully considered the issues and have made what is, for them, a moral decision. You don’t have the right to make the decision for them.
Correct me if I’m wrong, but there have been a fair number of anti-Jane posts which nobody seems to be keen to take umbrage to also.
And regarding it not being anyone’s decision to make – this is a forum to make public comment, que? The item under discussion is whether this *was* anyone’s (including the parents) decision to make, and whether it was appropriate for Ashley’s situation. If we lose the right to comment, we lose the right to defend the rights of people with disabilities.
Eva, you said, ‘But isn’t it possible that they really did make that decision out of concern for their daughter? It simply seems wrong to me that you should accuse they – who are perhaps among the more selfless people in the world – of selfishness. ‘
A lot of atrocities are committed in the name of doing the best thing for children. Female genital mutilation, for example. Or breast ironing (flattening of the breasts) in Pakistan or India. Or binding of the feet in China. I have no doubt that the parents cried as they held their children down; that they loved and cared deeply for their children; that they had valid (to them) reasons. In Africa, FGM is carried out because it will help maintain chastity and prevent infidelity, amongst other reasons; breast ironing is supposed to prevent young girls becoming attractive to older men and therefore preyed upon; binding of the feet was supposed to promote an aesthetic of beauty and make girls (a disposable commodity in China) more marriageable.
Heres the thing. We (rightfully) shriek out at all of these atrocities being carried out on healthy children in other countries. But when a child is mutilated in your own – even for the best of reasons, even because Ashley’s parents love her and care for her and have her best interests at heart – the outcry is lessened because of the disability. Somehow the worth of life of the child seems to be diminished in the public eye, and the atrocity becomes justifiable.
I do not think there is anyone here who does not have great sympathy for Ashley’s parents, or the parents of other children with disabilities. But I don’t think that makes them automatically sancrosact. If they had killed Ashley there would be the same kind of comment; gee, it was wrong and all, but really, you can understand why they did it. And the little girl would probably be better out of it…who would want to live in that condition? No, lets not send them to jail, they’ve been punished enough. Sure killing is wrong, but in this situation…
This is why we have rules and laws and moral laws about human rights.
Sam, that’s a beautifully clear analysis.
Somewhere hidden in a lot of the comments on this subject is the perspective articulated in a post which now seems to have been removed: that the writer, were he or she in Ashley’s situation, would prefer euthanasia. In other words, that really since Ashley would be better off dead, it doesn’t matter as much what is done to her while she still lives.
People who are themselves disabled have been fighting this precise position for some time now, and rightly so. That the seriously disabled would be “better off dead.”
(From the accounts we do have of Ashley’s life, it would not seem that Ashley herself would agree with this position. She seems, from her parents’ accounts, to derive a lot of pleasure from her life.)
We have laws concerning human rights of every person, whether disabled or not, to prevent other people from making such a judgment on someone else’s life. That’s important. And that is a wall breached in Ashley’s case, most dangerously I think.
It hasn’t been removed. Search my handle.
I didn’t say Ashley should be euthanized, or that people in Ashley’s position should be euthanized by law, etc. etc. I said that I would want to be euthanized.
Furthermore, I did not say it out of the blue in response to what should be done for Ashley — which would have been inappropriate and subject-changing — I said it specifically as a response to a question in the post.
If you don’t believe in people’s right to choose when they would die — fine. I do.
I didn’t say Ashley would be better off dead. I said I don’t want to be in that position. There are plenty of choices I’d make for myself that I wouldn’t make for other people. So when you sum up my position as Ashley is “better off dead,” you’re making several logical leaps which are not supported by my initial statement about my own desires.
Eva Key writes:
“You believe that Ashley’s parents made the wrong decision, and that’s a valid viewpoint. But isn’t it possible that they really did make that decision out of concern for their daughter?”
-Eva, I just truly don’t believe there is even the slightest chance that what was done to Ashley was done for any reason other than to alleviate the incredibly difficult and very real hardships that caring for a severely disabled child entails. And I think spending some focused time reading the blog of her parents will raise bright red flags, even to those who consider that this may have done to benefit Ashley.
Grumpy Realist writes:
“For others of us, we’re not so sure and see more of a balance of rights which have to be weighed. We’d like to have our doubts considered and not immediately dismissed as idiotic thinking.
And–as mentioned above–it’s not your decision to make. It’s Ashley’s parents, and they’ve decided differently. Simply because they’ve decided differently is no reason to assume that they haven’t carefully considered the issues and have made what is, for them, a moral decision. You don’t have the right to make the decision for them.”
-You know, I think it being the decision of “Ashley’s parents” is exactly the moral issue at hand. Is it really? Is it truly the decision of a parent to remove healthy organs from a child? The U.S. government, doctors and ethicists certainly don’t support parents who decide their local herbalist will cure their child’s lymphoma.
My entire point is that what was done to Ashley should never have been reduced to the pleas of her parents – who CLEARLY had a very deep conflict of interest in the matter.
What was done to Ashley is done, period. I should hope, however, that the very negative fallout from the disabled community and the parents of disabled children will give pause to any medical facility that thinks this kind of experimentation is something they should consider.
And I don’t think there’s been an imbalance of rights here, rather a total and complete disregard for what should have been Ashley’s rights to her own person from the moment she was born not to lose her healthy organs as a solution to make life easier.
You are free to disagree – and you have, I see that.
Sam, you’ve made all excellent points on how hypocritical Americans can be. They cringe at the inhuman mutilation done to children in other cultures – while those parents are just as passionate, if not more, in substantiating how doing so is in the best interest of their child.
Until we respect the human rights and dignity of flesh that IS NOT our own, not our property and accept that it’s NOT our decision to make for any reason other than to save a child’s life, we have absolutely no right being aghast at the story of an African mother who holds down her daughter while her legs are spread open and her sexual organs butchered.
It’s telling that my perspective troubles posters far more than pompous hypocrisy.
Heres yet another perspective.
I note that few people have brought up the ‘massive doses of estrogen’ used to stunt Ashley’s growth, yet this seems to be the cause of most of the unease amongst medical professionals discussing this issue. Seems that nobody knows if there will be long term side effects from the estrogen use.
You know, I was wondering how *any* ethics board could justify the so-called treatment until I thought this through. I know they are not an actual ‘ethics board’; more an inhouse hospital ethics committee with a token ethics consultant. Still. I could not believe that a responsible group of medical professionals could take the step of removing a child’s breast buds for the reasons cited.
Prepubescent girls do not generally receive doses of estrogen for any reason – the use of estrogen to reduce cancers in pre-menopausal women is considered unsafe and alternative treatments are sought.
Now lets google use of estrogens and see how harmless it is considered. And lets think a step further – given the likelihood (as cited below) of cancers to reproductive organs and breast tissue, is it not likely that the medical world would ‘go along with’ Ashley’s parents infantilising requests – because it would prevent their arses from being sued later down the track? Call me a sceptic.
PREGNANCY: Estrogens should not be given to pregnant women due to the risk of harm to the fetus.
NURSING MOTHERS: Estrogens are secreted in breast milk and cause unpredictable effects in the infant. They should not be taken by women who are breast-feeding.
SIDE EFFECTS: Common side effects of estrogens include headache, abdominal pain, nervousness, nausea, back pain, joint pain and vaginal bleeding. Patients may also experience vaginal spotting, loss of periods or excessively prolonged periods, breast pain, breast enlargement and an increase or decrease in sexual drive. Effects of estrogen on the skin include rash, and melasma (tan or brown patches) that may develop on the forehead, cheeks, or temples and may persist even after estrogens are stopped. In the eyes, conjugated estrogens may cause an increase in the curvature of the cornea, and, as a result, patients with contact lenses may develop intolerance to their lenses. Estrogens may increase calcium levels in the blood (hypercalcemia) in patients with breast and bone cancer. Some patients may experience increased blood pressure and triglyceride levels. There is an increased risk of cholesterol gallstones among men and women taking estrogens. Estrogens also may inhibit the flow of bile from the liver (cholestasis) and uncommonly cause jaundice. Estrogens can cause salt (sodium) and water retention (edema). Therefore, patients with heart failure or reduced function of their kidneys who are taking estrogens should be carefully observed for water retention and its complications.
Blood clots in the legs or lungs occasionally occur in women taking conjugated estrogens. This potentially serious complication of estrogen therapy is dose-related, that is, it occurs more commonly with higher doses. Therefore, the lowest effective doses that relieve symptoms should be used.
Estrogens can promote a build up of the lining of the uterus (endometrial hyperplasia) and increase the risk of endometrial cancer. (Women who have undergone surgical removal of the uterus—hysterectomy–are not susceptible to endometrial hyperplasia.) The addition of a progestin to estrogen therapy prevents the development of endometrial cancer.
The Women’s Health Initiative found that postmenopausal women (50-79 years old) taking estrogens, 0.625 mg daily, in combination with medroxyprogesterone, 2.5 mg daily, for five years, had an increased risk of heart attacks, stroke, breast cancer, and blood clots, while postmenopausal women taking conjugated estrogens without progesterone experienced only increased strokes but not increased blood clots, heart disease, or breast cancer.
Right, I don’t consider myself the benchmark for good parenting; but if it was me and my child, the risks would outweigh their perceived ‘benefits’. Granted, Ashley, without breasts or uterus will not be at risk of many of the stated side-effects (thanks, Doc!) …but doesnt the above cast a little bit of a shadow over the motivations of the parents *and* medical staff? And before you begin shouting about quality and not quantity of life, ask yourself…would you do this to a healthy child?
William Peace – “This leads me to conclude that the parents are so wrapped up in their own experience with Ashley that they are unable or unwilling to accept the fact their actions have never been just about their daughter or the medical procedures she underwent.” – Protest from a Bad Cripple
“If I have learned one thing in my life as a disabled person it is that when someone has my “best interests in mind” I am in very big trouble.”
– William Peace, the Bad Cripple
mandolin,
This is most likely my last post so here goes.
You’re an idiot. You speak out of pure ignorance and furthermore
children like Ashley for the most part are very happy.
They have all the love and attention they crave. I suppose you
couldn’t express your death wish as an infant cause here you are
big as life. Well Ashley is a rather large three month old infant
who thinks life is wonderful if mommy comes running when she
lets out a little cry.
You should really try thinking befor you speak !!!
An open question to supporters of the Ashley Treatment:
Q: Would you support the Ashley Treatment in a one-year old? Ashley’s parents wish they could have done this years before they did to “maximize” her benefit. So let’s say they’d been successful and she were now the size of a one year old, weighing 25 lbs. and would be that same size as a 72 year old woman with gray hair.
Jane,
The treatment Ashley was given doesn’t instantly and magically stop growth. Ashley wouldn’t have wound up the height of a 1 year old.
FurryCatHerder, if you don’t want to answer the philosophical question then don’t. But please don’t suggest that the surge of estrogen wasn’t intended to stop Ashley’s growth exactly where it was, because that WAS the precise point of the hormone. In fact, that is exactly why her parents lamented that they’d wished to be able to have started it much sooner.
Why isn’t it “mutilation” when we carve up our kids backs to put rods or mini bridges to correct scoliosis or break jaws to correct the alignment in their bites or tubes for ears or artificial knee joints? Nobody ever died directly from scoliosis or back injury or misalined jaws or ear infection or weak knees. Sure, it’s painful and life altering but nobody ever questions a parent about “barbaric” procedures to make corrections through surgery because this is what we expect from the medical profession.
Like Ashley’s parents, I’ve been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. I can’t imagine Elisabeth missing out on our annual backpacking adventures up the mountains when she reaches her maturation point in height or weight. I can’t imagine her lying on the floor or in a wheelchair as an adult because she’s too heavy to lift or transport into kyak or canoe or horse. I can’t imagine her going through life without having the same opportunties of her siblings and peers. It would kill her to be restricted to a wheelchair or in supine position all her life.
I don’t understand why is everyone against using medical breakthroughs for people if it will enhance their quality of life? As for using these same procedures so that parents can better assist their child, I don’t see anything wrong here either. Go ahead and talk about what is “ethical” and what is “dignity” after wearing a diaper instead of using a toilet for one whole month relying on everyone else except yourself to change it. Go ahead and talk about what is “ethical” and what is “dignity” after tightly binding your body in a burlap bag having to rely on others to take care of you.
It’s easy when they are young, but what about when our kids are 30? It’s not like we’re experimenting on our kids. People are blowing this “ethics” and “dignity” out of proportion and shoving their value systems and religion down our throats so much that they are actually interfering with progress. Most of the time, our kids are invisible to people. It is only when their disability becomes the focus that they are visible to others. And most times, what people see is what we dont’ want them to see — on object of pity.
Instead of people looking at our kid’s emerging abilities, the focus is alway what they can’t do which is often times used as the basis for planning their life instead of letting the parents and advocates having control. Develop a plan for kids based on what they can’t do? This makes sense? Do we tell kids they can’t play baseball because when they are 4 they can’t hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability.
Here’s my analogy. Let’s say typical children are like apples growing on limbs from trees and our children are like carrots. The common need is light, nutrients, and water. The conflict arises for the carrot because the tree blocks out the light and zaps the water and nuturients. We wouldn’t cut down the tree or let the carrots die from neglect, would we? But when the people who care for the apple trees try to tell the carrot growers what to do, this is wrong. We need to work together instead of working against each other.
“Why isn’t it “mutilation” when we carve up our kids backs to put rods or mini bridges to correct scoliosis or break jaws to correct the alignment in their bites or tubes for ears or artificial knee joints? Nobody ever died directly from scoliosis or back injury or misalined jaws or ear infection or weak knees. Sure, it’s painful and life altering but nobody ever questions a parent about “barbaric” procedures to make corrections through surgery because this is what we expect from the medical profession.”
-Improving what doesn’t work correctly so that it does work correctly (or as close to “normal” as possible) is diametrically opposed to removing what does work perfectly fine and as nature intended for it to work. If it’s not feasible for a 30 year old “Ashley” to go rock climbing, then that’s the answer right there. The answer shouldn’t be to alter her body so she’s manageable to her family.
And looking for something to bypass some of her female-related normal biological functions? Well, she IS a girl – not a boy, not a 3rd gender, not androgynous.
Here’s the slippery slope issue I worry about most personally. (It is far from my only concern.) If and when this becomes a standard procedure will it become an expected procedure? And will the parents who do not choose it be given fewer opportunities for support because they are perceived to have welcomed the additional care needs their child requires.
I am reminded of an article just written by a mom with a child with Down syndrome who like me (and I am the Susan Mr.Soul refers to) overheard a parent say to another parent – I wonder why she didn’t have an amnio… I have been asked countless times why I didn’t have an amnio or why I didn’t abort who do not know my son is adopted. Each time I am asked my heart breaks because I know it means in most cases it is what they would have done and what a wonderful life experience they would have missed.
And now it is recommended that all pregnant women be given a test (that isn’t entirely accurate) to determine if their child has Down syndrome. 80% in the US and 90% of children who are determined to have Down syndrome in utero are aborted.
What happens to those parents who love their children exactly as they are, but need support services to care for them? Will we continue to find them or will we be relegated to the side of the road as unwanted trash? It is already too diffcult to get support services people with disabilities need and that is why this happened. The fault is not with Ashley’s parents for feeling as if this is the best choice for their daughter, the fault is in our society that doesn’t embrace difference and provide her family with the support they need so that their daughter is a valued and cared exactly as she is and however she becomes.
Improving what doesn’t work correctly so that it does work correctly (or as close to “normal” as possible) is diametrically opposed to removing what does work perfectly fine and as nature intended for it to work. If it’s not feasible for a 30 year old “Ashley” to go rock climbing, then that’s the answer right there. The answer shouldn’t be to alter her body so she’s manageable to her family.
The bias here is the use of “altering.” This is an opinion. For others, it could mean “fixing” what isn’t working. Imparting our own philosophies, religion, and values on others impeded progress for other people as in Ashley’s case.
Bypassing the menstrual cycle does not make any woman less. Again, there is a value judgement here about “what makes a girl.” My daughter is who she is with or without her ovaries.
Sam wrote: “A lot of atrocities are committed in the name of doing the best thing for children.”
That’s true, but the point of my previous statements wasn’t to say that because Ashley’s parents are well-meaning, the Ashley treatment must be the right thing to do. On the contrary, it is possible for well-meaning parents to do horrible things to their children (as you so eloquently pointed out).
Regardless of whether or not the Ashley treatment is right, I take issue with Jane’s attempts to paint a picture of Ashley’s parents as morally inferior and selfish people. What I gathered from her arguments was that since the Ashley treatment is a horrible thing, Ashley’s parents and anyone else who supports its usage are horrible people who like to “hack up” children.
Jane seems to think this way because she is certain that the Ashley treatment did not improve Ashley’s quality of life, and that it is not possible that other people might think that the Ashley treatment did make Ashley’s life better. Rather, if people support the Ashley treatment, it is not because they think it was good for Ashley, but because they believe that disabled children are inanimate beings, akin to “furniture” that you can “hack up” to fit your own needs.
Maybe it’s because I haven’t read closely enough, but I haven’t heard a lot from Jane on why she thinks that the Ashley treatment does not improve Ashley’s quality of life in the long run. Rather, all of Jane’s arguments are built upon her assumption that Ashley’s life was not improved by the Ashley treatment, which I do not believe anyone has proven.
Jane, I echo the sentiments of the commenter above – possibly way above, given the length of this comment thread – that you’re doing your argument a disservice with your style of presentation. Obviously, you feel passionately about this issue. I would like very much to consider your argument, yet I find it difficult to sort out exactly what is the argument. Perhaps you wouldn’t mind just putting it out there, bare bones premise-style or bullet-point-style?
Sam wrote: “But when a child is mutilated in your own – even for the best of reasons, even because Ashley’s parents love her and care for her and have her best interests at heart – the outcry is lessened because of the disability.”
I disagree, and I’m not sure how you can make that assertion, because if Ashley were not disabled no doctor in America would consent to performing the Ashley treatment on her.
But disregarding that fact, what about the countless disabled people, and the groups that represent them, that have spoken out against the Ashley treatment? They make up a significant portion of the “outcry” you describe. They would not be speaking out about the Ashley treatment if Ashley didn’t have a disability.
People object to the Ashley treatment because of the fact that Ashley, being disabled, cannot speak for herself, and therefore it is horrifying for them that she should have such procedures done to her without her consent. It is also horrifying because they are aware of the fact that the disabled have been made victims before, in the immediate past, using techniques reminiscent of the Ashley treatment and under the command of Adolf Hitler.
Jane wrote: “Eva, I just truly don’t believe there is even the slightest chance that what was done to Ashley was done for any reason other than to alleviate the incredibly difficult and very real hardships that caring for a severely disabled child entails.”
Jane, if that is true – is it really that bad?
I’m not certain of Ashley’s parents’ motive. But even if they intended the Ashley treatment purely for their own benefit, I don’t believe what they did was wrong. I don’t believe in slippery slopes. What I am toying with is the idea that even if the treatment provides no benefit and only harm to Ashley, the benefit that it gives her overworked and loving parents outweighs and justifies the minimal discomfort it causes their child.
“The fault is not with Ashley’s parents for feeling as if this is the best choice for their daughter, the fault is in our society that doesn’t embrace difference and provide her family with the support they need so that their daughter is a valued and cared exactly as she is and however she becomes.”
This is probably the most intelligent observation I’ve read. I would further this observation by saying that our society does not fully understand that the needs of a child with global delays cannot be met or dictated by consensus.
Again – Ashley was not sterilised, but merely had her uterus removed. So, as a fertile young woman, she can now proceed to take part in IVF procedures – her healthy ovaries can be harvested for any manner of altruistic purposes.
On another tack – it seems that the parents have (unadvisedly; or perhaps ill-advisedly, and from which quarter?) attempted to take on the media, only to be devoured by them, whether in support or in opposition. A mistake on the part of the parents to have thought that that the newsmedia could be “utilized”. Note that the medicos made no such mistake, merely published in professional journals. Thus the terms of the debate are at present contrived and mask the relevant subjects, so much so that the treatment can now only be discussed with reference to the parents’ decision.
Jane, this is the last time I’ll try to explain what I mean, because somehow I’m just not expressing myself properly.
We’ve both read their website. I think, based on what I’ve read there, they would have gone ahead with the Ashley Treatment regardless of what their financial, emotional, and physical circumstances were. I therefore think that harshing on their family planning decisions, especially ones made years before they even began contemplating the possibility of medical intervention, is unnecessarily judgmental. Their forecasts of what life would have been like for her with an adult body show that they are not very good at looking at the future in any logical way, so why should they have been better at this when Ashley was very young?
You obviously feel passionately about this issue, and I hope you understand trying to point out the bits that bother me doesn’t mean I don’t respect your views.
A few side items about all this that disturb me that I haven’t seen addressed….
What Ashley has is a form of cerebral palsy, albeit a rare form. I have to wonder why it is never referred to as CP. CP is a rather common disability. I think the outcry about this would be much louder if more people thought of Ashley as having CP – like a their friend or neighbor they know – rather than a rare brain disorder.
It is called the “Ashley Treatment”, not Ashley’s treatment. I think it is here I saw it noted that this personalizes it, I on the otherhand think this depersonalizes it and her.
The photographs of Ashley with her family have everyone else’s faces blocked out. If this family is so sure this is the right thing why not show their faces. I appreciate not showing the children’s faces – children should have the right to privacy. The parents created the blog, included 14 photos of Ashley, and yet hide their faces?
I also wonder about the choices of pictures. Are the most recent photos they could have shown of Ashley really ones taken when the power is off and everyone looks their worst?
To me it seems like many things have done to push Ashley into a category of the fewest people possible. She is not like us, she is as much not like us as possible. It is OK this was done to Ashley because she is so much unlike us. But there are some of us who embrace her as one of us and will fight as hard as we can to be sure that Ashley’s treatment is only her treatment and is not embraced as a treatment for any other child.
Thank you so much, Xuxan.
We are Ashley. Ashley is us. If Ashley is not us, I’d like to see a reasoned explanation about why not. What passes as such on the parents’ website doesn’t cut it.
Enc blockquote. I’m apparently screwing up a lot of html today. :(
[Fixed! –Amp]
Hey, but on second thought, that IS the real question, isn’t it?
WHY IS ASHLEY NOT ME?
Well, because she’s brain damaged, and it follows that she doesn’t have the same rights I have? (woops!) Or, her parents can more easily manage her if she is confined to childhood? (My parents felt the same, without a doubt.) Or, she need not be consulted because We know what is best for her? ( YIKES!)
“We are Ashley. Ashley is us. If Ashley is not us, I’d like to see a reasoned explanation about why not.” Where was everyone when our early intervention infant groups and head start programs were legislated away? Where was everyone when the NCLB legislated one size fits all education reform?
“What passes as such on the parents’ website doesn’t cut it.” Parents like Ashley’s all go under the radar because nobody misses them when they disappear. Like I stated, our children are only visible to others when their disability becomes the focus or issue … then … suddenly they are everybody’s child for 15 minutes.
How, exactly, would you consult Ashley? How, exactly, do you propose to explain the pros and cons?
I don’t consult my own kids on things they can’t understand. If I make a decision on behalf of my four year old daughter, I do it for her. Don’t you?
thats how i feel about the ” ashley treatment”
the parents are being so selfish and they’re doing it because its more convenient for them. i don’t buy it that they’re doing it because it benefits ashley .
ok , so i am a quadriplegic , my legs and feet are paralyzed and so are my both wrists and left hand , and 2 fingers in my right hand . i have little movement in my left arm and it will eventually end up paralyzed as well… i am 5’4″ and weight around 98 pounds …
sometimes i do have to be carried around . so far there is no hope for my case and i will never walk again or have use of my paralyzed hand and wrists ….. so why dont i amputate my legs and hand/ arm ??? it would be MUCH easier on my caretakers !!!! i would weight much less , they could carry me much easier and i could join them in many trips i dont go because its such a hassle to deal with my ramps and put me inside a van , etc …
and hey !!! im not nursing any baby , dont even know if i’ll ever carry a child inside me and i do have endometriosis
so cut off my breasts too !!! sandra ( one of the friends i live with , who is a nurse and takes care of me ) has a hard time putting my bra sometimes , and im only a 32 B size bra !!!
and that whole bullshit about the menstrual cramps and periods , excuse that they say because they did a hysterectomy on ashley . i take depo provera every 3 months to treat my endometriosis , i am on a chemical menopause and i havent had a period ( bleeding and painful cramps ) for more than 2 years now . so dont give me that shit as an excuse , i just dont buy it .
my doctors dont want to perform a hysterectomy on ME , who is 31y/o because they think i am TOO young for it !!!!!!! and there are OTHER ways to prevent periods and painful cramps from happening .
phew … i could go on and on and on with my opinion on this case , but i’ll shut up now .
E’s Mom, you are arguing for better services for the disabled and their families, and I’m 100% on your side.
We wouldn’t be having this discussion if schools and public places provided adequate facilities for our children when they need to be changed or bathed in the instance of a young menstruating female.
We wouldn’t be having this discussin if schools and public place went beyond ADA compliance by making buildings, sidewalks, parks accessible for all without ever having to rely on other people to carry our kids or their wheelchairs. It took us 45 minutes to get into a science center by way of their “handicapped” route.
When our families and children’s options aren’t restricted to “handicapped” routes or zones or areas then I’ll even by ya’ll a beer.
Go Lola!
Although nobody ever says it out loud, its because you still have your intellect. Obviously you still also have your voice – but it is surprising, the amount of people who equate people with intellectual or cognitive disability with being down the bottom of the food chain. (Even people with physical/mobility impairments!) Some (well meaning) people in education often suggest we have ‘programs for the disabled’ and it takes an age to explain to them that it is not appropriate to crank people with all types of disability in together. Sometimes we run programs for people with physical disability, or psychiatric illness etc but they are based on the participants being able to relate to the barriers that each other face and also for us being able to address those barriers.
You know what? It would be interesting if you *did* want the Ashley treatment. If you went into your GP, and said, ‘You know what? I’m sick of the Depo. I hate Sandra mucking around with my tits in the morning, and I think that cutting my arms and legs off would be a good solution. How about it?’ Me, as a sceptic, I think that in the absence of the possibility of some ‘groundbreaking’ new medical ‘treatment’ and the probability that you, a person with cognition, would have not only high risks but the possibility of suing, the possibility of regret, etc – they wouldn’t touch you with a bargepole. As you pointed out, you are too young for a hysterectomy.
This whole debate has dissolved into two ‘sides’ – the parents of children with disability and those who sympathise with them, and the people with disability themselves. I have yet to hear anybody with a disability (a significant one) make a positive comment about this case.
Bingo, E’s Mom, and congrats. That’s exactly what we’ve been trying to say.
Sorry, Sailor, but that doesnt cut it. We are saying that these parents have made a *bad* decision for their child. It can be based on whatever good motivations you want to attribute to it – *bad* decision.
Again, I am not the benchmark for good parenting. But I have problems with people who allow children to have plastic surgery; compulsively enter them in beauty shows; drive and drive and drive them to achieve in the sports or academic arenas – ad nauseum.
The difference is that your four year old has the intellectual capacity (even at four) to say no Daddy, I don’t want to. And the recourse to sue your arse off afterwards. Ashley does not have that option, and that is why it is important that the decisions that are made for her are based on the few rights she (should) have.
Nobody can consult Ashley – that is why we have human rights laws for people with disabilities.
The folks at ‘Not Dead Yet’ http://www.notdeadyet.org/ – have it exactly right.
thank you for your post , samantha , and i totally agree , you make a great point when you ask ” what if i WANTED the ashley treatment done on me . ?? ” . as i said , im a quadriplegic and most of my body is paralyzed, so its of no use to me . would doctors agree to do it ?? even if i signed a document which says i would not sue if i regret , notarized and everything , i HIGHLY doubt it any doctor would even touch me.
they did it with ashley because they feel shes like an experiment for them , thats what i think .
really sad :-(
My son is 23 and cannot make any medical decisions on his own. Fact is he can’t make any really important life changing decisons on his own. One of the challenges I have as a mom is to make decisons in his best interest and that I believe he would choose. I don’t always make the choice I would make myself when I put myself in his shoes.
This is part of respecting who he is.
Thankfully my son can give me some input into his preferences, whereas Ashley seemingly cannot. (I am not going to say cannot, because I have seen people who others believe are not communicating communicate.) People think I am a very odd mom when I am sad about something he is doing and I had the power to prevent it. I can stick my son in a cocoon and let him live a perfect sheltered life that I fabricate for him or I can allow him to experience as much life as he possibly can – the good and the bad.
Eva Key wrote:
“I haven’t heard a lot from Jane on why she thinks that the Ashley treatment does not improve Ashley’s quality of life in the long run.”
-It’s impossible for me to furnish evidence for a negative. It is up to you, the one who asserts, to do so. I say that removing perfectly healthy organs from a human being provides no benefit, other than to alleviate burden to her family. If you can prove otherwise, please do so. By the way, proving otherwise does not mean you get to hypothesize about Ashley developing breast or uterine cancer or that she’ll have unbearable menstrual cramps. That kind of fortune telling should have no place here.
Providing evidence for the health benefits of removing Ashley’s uterus and breast tissue is to illustrate how exactly Ashley was better off 1 month after the surgery vs. 1 month prior.
Eva Key wrote:
“even if they intended the Ashley treatment purely for their own benefit, I don’t believe what they did was wrong. I don’t believe in slippery slopes. What I am toying with is the idea that even if the treatment provides no benefit and only harm to Ashley, the benefit that it gives her overworked and loving parents outweighs and justifies the minimal discomfort it causes their child.
-Well then Eva, that’s where we’ll have to agree to disagree. So long as Ashley is a human being, protected by our constitution as her own person, I will never agree the benefit to a parent should be weighed over removing healthy organs from the child.
“We wouldn’t be having this discussion if schools and public places provided adequate facilities for our children when they need to be changed or bathed in the instance of a young menstruating female.
We wouldn’t be having this discussin if schools and public place went beyond ADA compliance by making buildings, sidewalks, parks accessible for all without ever having to rely on other people to carry our kids or their wheelchairs. It took us 45 minutes to get into a science center by way of their “handicapped” route.”
-So the answer is to alter the bodies of the handicapped? I just don’t even imagine where you draw the line. Her arms? Legs? What more? When do you stop? When does incompatibility with the facilities at the local science center warrant removing healthy body parts from HUMAN BEINGS?
I think there are an amazing amount of people who will extend the parents of Ashley – perfect strangers – an extraordinary amount of trust.
I could have been convinced of their benevolent reasons, though I would never have supported this radical and inhumane act. But reading their blog makes it extremely clear who this was for and Ashley, sadly, doesn’t seem to have been a consideration.
1) A quote: “The decision to move forward with this treatment, unlike what most have thought, was not difficult.” How in the world can ANYONE support that statement? Even if you believe these people did this wholly for Ashley and for no one else, can you honestly say that removing your daughter’s healthy uterus, her breast tissue and stunting her growth would be anything but difficult? At the least, wouldn’t it keep you up some nights, wondering, thinking, praying that you’re going the best route? Would you be that arrogant with your child’s body that these procedures wouldn’t even have been difficult?
2) Ashley’s image. I find it par for the course that they shielded the pictures of themselves and their other children for the sake of privacy but found it perfectly acceptable to parade Ashley’s picture to the world. Again, demonstrably, Ashley is a lesser human being – not worthy of the privacy or dignity afforded to the other children. It was perfectly fine to exploit her image in various poses. Again, this goes to the depersonalization of Ashley.
3) This quote from ethicist, George Dvorsky was included in the parent’s blog: “The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” Even if you’re the parent of a disabled child who can understand the Ashley Treatment, wouldn’t you have even the slightest disgust for the way in which a so-called “ethicist” has described your mentally disabled child and mentally disabled adults? He has said – quite clearly – that having a full-grown, fertile woman with the mind of a baby is grotesque. Frankly, what’s grotesque here is that an ethicist would have this mindset and, worse, that Ashley’s parents would support those views.
Even if you can understand and sympathize with the practical reasons for this treatment, can you understand why their claims of doing this for Ashley raise some pretty big red flags to others?
“I have yet to hear anybody with a disability (a significant one) make a positive comment about this case.”
Irony according to Ed Byrne is like being a town planner on her way to a seminar of town planners at which she is giving a talk on how she solved the problem of traffic congestion in her area and can’t get to the meeting because she’ stuck in traffic jam.
i am someone with a significant disability and i only have negative comments regarding this issue
Elisabeth, you’re missing the forest for the trees.
I agree with everything you have said about lack of support for people with a disability and for their carers. It is an awful situation and it sucks.
You are missing the point that we are trying to make about human rights, and Ashley’s entitlement to them.
My little boy, Jake, is autistic. Physically, he is fine. He is a lovely looking little nine year old boy who is one of the great joys of our life.
Jake goes to a mainstream school where we live in country Western Australia. Rural education options are, to say the least, somewhat interesting. It has been pointed out to us on many occasions that Jake could be homeschooled, or should be ‘put into a special school’. However, nobody is really willing to challenge us by throwing him out in the current climate of inclusion. Jake gains a great deal from mainstream schooling – it is beneficial for him to model social behaviour from his peers, and he would lose that if he was homeschooled. His social behaviour skills have increased enormously in the last three years.
But Jake is very, very difficult to manage. He suffers extreme anxiety in most situations, and especially in situations with other people around. Jake likes to do things like provoke sensory stimulation (stimming) which involves him doing interesting things like flapping his hands, spinning around repeatedly, touching shiny or reflective surfaces (corrugated iron is a nightmare as he feels that he has to touch each rib). He has to walk along a kerb and gets very distressed if he cannot. Travel makes him very uncomfortable and so do large groups of people. Taking Jake to a shopping centre is very challenging (and you can imagine the looks you get with a spinning, flapping, whirling dervish who touches shiny objects and says repetitive words in a monotonal, robot-like voice).
Jake really enjoys going to rural shows, as the spinning rides seem to calm him down. He says he loves them and always clamours to go.
You know what? I don’t want to take him to the Royal Show. It is a nightmare. I hate people looking at me with that look that says ‘Just smack him.’ I hate trying to pull him away from whatever stim he is using, and trying to keep him under control. It is embarrassing when he stands still and will not move, or shrieks in his ‘robot’ voice. It is bloody hard work and I am sick of it.
I don’t want him to go to school. It would be easier for him to stay at home where he is reasonally ‘well behaved’, to give up work and go on a carer’s pension. I hate the struggle with the school bus in the mornings, and the first three weeks of school (Jake hates change) is hell. Today is the first day of school and Jake has been up all night, wide eyed and pacing, stacking things in his room and muttering under his breath. I went to sleep for forty minutes at one point on the couch – I feel cactus this morning. I would probably do a terrible job at teaching him but it would be so much easier.
Like all parents of kids with a disability, I sometimes look at him and say ‘why me?’
But here it is – Jake has a right to attend school. He has the right to be treated equally as my other children are (I have six, he is the last child). I would not dream of denying the others the outing to the show, the opportunity to an education, or anything else they would be entitled to. I suppose I feel for his rights strongly as I have a disability (muscular dystrophy) myself, and I know what it is like to be discriminated against.
Xuxan said, ‘I can stick my son in a cocoon and let him live a perfect sheltered life that I fabricate for him or I can allow him to experience as much life as he possibly can – the good and the bad.’ She has it exactly right.
Ashley is not a possession. None of our children are. They are on loan, from God, to be returned at a later date. You can love, and cherish another human being, but you cannot own them.
This whole issue is completely wrong. And the worst thing is – if I invented the ‘Jake Treatment’ – where I locked my adored son into our house with all basic commodities necessary for a human but gave him no social contact – if we refused to speak to him on the grounds it would exacerbate his ‘condition’ – if we took him nowhere, homeschooled him, and took away the things he is entitled to as a human – there would be other, well meaning parents of children with autism who would say ‘I can see why she did it.’
What is important (not so much for Ashley now, as it cannot be undone) but for other children with disability is setting of a precedent – making this all okay. Medical professionals giving the okay to perform convenience surgery and setting a precedent for any parent to ‘adapt’ their child to make it easier to care for them. We do not own these children – neither the parents, the medical profession or the community own them – but we do own the right to fight for their rights. That isnt because you own the child; it is because in a democratic society, you have the right to take part ownership of the law. The issues you are speaking of (getting your child equitable access, etc) are the same issues – they are human rights.
Lives of parents of children with a disability generally suck. Of my two kids with disability, I consider Jake’s the greater disability, and harder for me. It is hard when you are never acknowledged with a hug or a smile or a warm word, because that person does not understand emotion. It is harder to watch his distress when things go wrong and he does not understand why they go wrong.
But do you know what? I took Jake to the Royal Show with his siblings, and it was a nightmare, as predicted. He did all the things above, and was so exhausted that he fell asleep on the floor of the train on the way home. But it was completely and utterly worth it for the split second that I glimpsed a very small and secret smile of delight when he was on the rollercoaster. When things are rare, you value them more.
Today, I am completely buggered, and I know we have three weeks ahead of an unsympathetic teacher, sleepless nights, constant stimming and obsessive behaviour and a child who will not eat or sleep because of his anxiety. But I will not give up fighting for his rights, not for one single second, nor for the rights of any other child with a disability.
Samantha,
You’re so right. You could have made easier choices with Jake had you considered your own convenience – yet, you didn’t. And you’ve said it brilliantly, are children “are on loan, from God, to be returned at a later date. You can love, and cherish another human being, but you cannot own them.”
I am truly amazed that so many people believe parenting is equal to ownership, giving them free reign to do whatever they deem best for their property – whether it means removing healthy organs or limbs.
I won’t pretend to be too surprised when a teenager with the IQ of a small child is given a hysterectomy for the same reasons as Ashley. But I will always be shocked when the request comes from the very parents of these human beings – those who should protect their human rights the most.
Jane, I’m with you on this one. Of all the things I’ve read, this is what appalls me the most. That it was easy for them to opt for this mutilating surgery, which permanently infantilizes their daughter. Even if, for argument, we assume that it is the right decision, what kind of parent would not agonize over it?
The kind who had already infantilized her. The kind who refers approvingly to a doctor who thinks that a mentally disabled adult is “grotesque.” The kind who will protect the other children by blocking out their faces, who will protect themselves by not disclosing their last name, but who have no problem showing such pictures of Ashley as are on that website. The kind who will refer to a living human child as a “pillow angel.”
Nothing can be done for Ashley at this point. But a lot can be done for other such children by discussions like this one.
(And no, just because you have a seriously disabled child does not give you a free pass, that we should all approve whatever you choose to do about it, or about the child involved.)
“You are missing the point that we are trying to make about human rights, and Ashley’s entitlement to them.'”
The “human rights” issue is very clear. Protecting one’s “human” right requires taking ownership and responsibility for the reason why it became an issue in the first place.
great post, susan , i agree 100%
Susan,
It’s for the reasons I outlined in post #458 that it seems rather clear the “Ashley Treatment” should have been named “Convenient Ashley.”
I’m very troubled by her parent’s blog, their own words and their support of heinous views that the parents of any disabled child should denounce.
I’ll remember this blog and the opposing view years from now, when some government bean counter figures out that we can spend a mere fraction of the fiscal budget currently alloted to the severely disabled by chopping them down into more manageable packages. I believe Ashley and her “treatment” will go down in history as the turning point of something very ugly to come. Unfortunately, I think a great many people will need to see that ugliness unfold before they can fathom it, regret it. I’d rather just leave this as a nightmare that never came to be.
Or maybe Jane this will be the turning point where finally people with disabilities needs are finally taken seriously. Perhaps if the groundswell of support against this continues it will wake-up our government to the consequences of constantly paring away service to individuals and families with disabilities. Perhaps if we as people with disabilities and their allies stand up and are counted this could change forever how much respect we get for who we are – exactly as we are. There is something you can do. The solidarity of support I wrote is nearly at the point it needs to be to get national attention – check it out and consider signing. Ask others to sign – especially from Inidana, Mississpii, Nebraska, Oklahma, South Dakota, South CArolina, Utah, and West Virginia where we have no signers. There must be no more Ashleys. http://www.ashleyx.info
Xuxan – I just signed, thanks.
Me too, Xuxan – thanks.
samantha, you are one of the heroes of this life.
I don’t know what beliefs you hold, if any, about what the meaning of our lives are. But if nothing else, I believe that, as the Hebrew Scriptures say, “[Your] children will rise up and call her blessed.” You are one of the great ones.
Please accept my admiration and support. I too have an autistic child (now an adult) who is also mentally ill (bi-polar) and is living on the streets, so I know only a little of what your life is now. If we don’t believe in God, at the least we believe in our children. Your story makes that clear.
Ditto from me, Susan:) I truly hope everything works out with your child – this goes back to what Elisabeth’s mom says about support services. Support services for the mentally ill are especially bad in this country. Will be in my prayers x
Your Hebrew quote was very synchronistic – I am working with another group of artists (my part time job) in an exhibition that talks about autism and the way people with autism see the world. Most of the people in the group have children with autism or have autism themselves. The art is magical. I found some information on dreidels (a Jewish toy) which has an inscription on it – ‘A miracle happened here’ and have stamped the acronym symbols over our art by way of signature. I wish that for you, Susan.
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