“A little emasculated mass of inanity.” ~Teddy Roosevelt on Henry James
I’ve been given the opportunity to write in a main stream magazine’s web edition about growth attenuation (GA) otherwise known as the Ashley Treatment. I will be doing so and will keep you informed.
While doing some research (to make sure I don’t sound too foolish …) I finally found the answer to the question “Has anyone done this to a male?”
Yes.
I will point to the news article after I discuss it here. Basically, European parents had their Vietnamese adopted son chemically whacked altered.
From an interview with the adoptive mother:
She said: “If you had an eight-year-old who had cancer, you wouldn’t ask, do we give her chemotherapy? You just do it. Every medical treatment is playing God. It is interfering with nature. This is to do with respecting a human being who needs help.”
Yes, just like cancer. You die from being mentally disabled. And removing cancer is just like stopping puberty to make one easier for caregivers, or stopping natural physical growth. Or like Ashley, removing healthy breasts, healthy uterus, healthy appendix … yep, same thing.
Children like Tom are difficult to carry around, she said because “they are so strong and the muscles are so tense. A child weighing 25kg seems to be the weight of three because of the muscle spasms.”
This is the first (and really only) justification in the interview for why they subjected their adopted son to this. He will be difficult to carry. Heck, why not go all the way and prepare him to be carried by six …
The doctor had never given a disabled boy GA therapy before, although he had used similar treatment on children who had grown unusually tall. He said he would use estrogen to speed up the natural closure of Tom’s growth plates and that, in turn, would stop the child growing.
Heck, tall kids, mentally disabled others. Same thing. Go for it doc.
Many of Tom’s mother’s questions to the doctor went unanswered.
“I asked him about the medication, will it cause more seizures, will it affect him falling asleep, will it affect his feeding issues? He had to repeat himself, saying, ‘I don’t know, I don’t know’.”
But the endocrinologist assured her it was safe and, when he treated children who were too tall, he never had complications.
Sorry, at this point even Single Dad is speechless.
Her main worry, she said, was that Tom might develop breast buds, a potential side-effect of using estrogen. But the doctor said if that happened, they could operate to remove them.
OH MY GOD! TITS! He may grow breast buds! No worry the doctor never did this for a kid like this, no worry about anything but he may develop breast buds? No worry the doctor did not know how this would affect feeding or seizures?
Damn, Darwin never considered adoption in his theory …
But, after discussing GA therapy with the doctor she felt that experiencing puberty might be too upsetting. As an infant, for example, Tom always became very agitated when having his hair cut; she worried trimming his beard may cause him similar distress.
Thank goodness, the only reason is not that the kid will be tough to carry. He may not like to shave! Damn, you mean I could have had my testosterone whacked and I wouldn’t need to shave? Why wasn’t I told. Is it too late to trade my shaver in for that device in the photo above?
Tom’s mother was told that the procedure would not normally be undertaken without approval by a hospital ethics committee, but she is unclear as to whether permission has been officially granted.
The procedures are basically over and she does not know if permission was granted? Remember, the hospital that did Ashley’s surgery put out a press release (read it here) that clearly states “Unfortunately we failed to assure we had a court order authorizing us to proceed … which resulted in a violation of the law” concerning a major part of her surgery. Yes, Ashley’s mutilation was illegally done.
She said she was shocked at the level of criticism leveled at Ashley’s family and suspects that it stems from a lack of understanding. “If the people who cried out the loudest in a negative way had any clue what it is to care for a child like Tom, like Ashley, they would not say the horrible things they have accused Ashley’s family of,” she said.
Ok, to my more genteel readers, cover your eyes and ears for a second. Or as they say on the news during Olympic coverage, avert your eyes and ears if you don’t want to hear this. I am about to lose it.
FUCK YOU LADY. I have no clue? UP YOURS. I have two severely disabled children, a boy and a girl a young man and a young lady. I am a single care taker of the young lady, and neither kid is mutilated. I have no clue? YOU have no clue what it is like to be the “natural” parent of a disabled kid, and yeah, I know I’ll get shit for saying that, but there is a difference on a gut, visceral level.
Ok, you genteel readers, come back.
“Those people who reacted the most harshly were [self-aware] disabled people. They are aware of their rights. Tom isn’t. Ashley isn’t. Somebody has to make decisions for them and who better to make that decision than the parents who love the child.”
Read that again. This part has me so far past incensed, I cannot tell you. Look at what she is saying. The people who think this is most abhorrent are “self-aware disabled people.” The closest analogue we have to Tom or Ashley specifically are “self-aware disabled people.” WTF? We cannot ask Tom or Ashley or Pearlsky if it is ok to surgically and or chemically change / alter / mutilate them, but we can talk to some severely disabled people who can communicate, people as close to Tom or Ashley or Pearlsky as we can get, those who do have communication, and you know what, they react “most harshly” to this procedure, according to this mother. So what does she do? She does it to her son anyway. What I am missing here folks?
(Full article here)
I wrote this about three years ago, it refers to “The Other” and how I believe it applies to growth attenuation and more. It is even more disturbing in this case.
Now for the biggest surprise. I do believe there is a place for some surgical or chemical intervention for some of this in our lives and in our community. I will save that for the mainstream article I write.
That is, if they still want my opinion after seeing this post …
It gives one the shivers doesn’t it? And not the good kind. Nicely analyzed.
While that mom sounds like an idiot, I think Ashley’s parents made their choices based on what they felt was best for their child — what would allow them to keep her most integrated with the family. There are many studies out there about the drawbacks of institutionalized care. While you have managed to keep Pearlsky at home, not everyone can manage that. Every family has different limits. When the choice comes down to GA treatment allowing a person to live with their family for life, or no GA requiring them to be institutionalized as a young adult, I think each family with the guidance of medical ethics boards should be allowed to make the choice with court approval.
I think it should be horribly difficult to get it approved so that no one ever makes the choice lightly and that all possible alternatives are explored but I think sometimes, it does become a choices between two bad options.
Erin, I have done extensive research on GA, have a blog “dedicated” to it and had a presentation on the matter sent via DVD to a disability conference in Maryland in 2010. It is a fallacy to argue that a disabled individual can stay at home “forever”. What if the parents divorce? What happens if there is financial disaster in the family? What if a parent dies, becomes disabled themselves, or just plain too old to care for the adult child? There is no such thing as “forever”. Why are care facilities so horrible that a parent would choose to mutilate their child rather than send them there? The answer to keeping an individual “well integrated” in society is provide the proper supports to assist families and communities to do so, including things like lifts and good wheelchairs.
At issue as well is cognitive capacity. The “treatment” is considered abhorrent if done to someone with “normal” cognitive capacity. The attitude, fundamentally is one of, “what they don’t know won’t hurt them.” How is that capacity assessed in a child who cannot in any way physically demonstrate said capacity? Ever seen the movie “My Left Foot”? Ever heard of Ann McDonald? And what about the rest of us, what are the implications if it’s okay to do something to someone because they supposedly wouldn’t know the difference? What happens when you or a loved one suffers from Alzheimers? Would it be okay then, for another to decide how to make you “easier to care for” for “your own good”?
Finally, hospital ethics committees operate, quite literally, in the dark, with no checks or balances and with no disability representatives present and GA is actually being performed with regularity, as we speak, in a sad, but significant “underground”, for lack of a better term.
I don’t see any justification for the Ashley Treatment. None at all, and I do believe that those who think they are doing the best for their children, are not. I also happen to think that outside of a life or death situation, removing one half of a human brain (hemispherectomy) is a barbaric thing, too. And, yes, I know that some people go on to live “outstanding” lives. I would rather my daughter have seizures than be drugged out of her mind, too. There are those who feel completely the opposite, but they could never persuade me otherwise. I think that the Ashley Treatment (the whole thing, including the name makes me cringe) is one of those issues where the two sides shall never meet, so while I appreciate your side of the debate, Single Dad — and disagree with you, Erin — I don’t imagine this sort of thing will ever be resolved. In some ways, it’s like the madness of war —
I agree with you on the Ashley Treatment -actually couldn’t even get all the way through it because it literally made me feel nauseated, especially the persistent semantic gymnastics utilized to justify it. On the subject of drugged out of mind – I would have said the same thing at one time, but not now. My daughter has a severe, intractable seizure disorder and an equally severe behavior disorder due to mental retardation and frontal lobe damage. When she hit puberty, her seizures went off the Reichter Scale – not uncommon. On 2 occasions she required hospitalization during menses and it took over 10 days to break the seizure. Because she has such a tendency to go into status, I seriously considered an elective hysterectomy – a decision I fretted over for more reasons than I can list here (I tried progesterone therapy and she became dangerously aggressive). A new medication, added 2 years ago, has practically eradicated 2 of her seizure types, so even though she still has 15-20 seizures a month, mostly during estrogen surge, I am relieved to feel I don’t have to worry about the surgery anymore – for now, anyway. But I can tell you this, when it comes to her behavior, I would medicate her into oblivion if I had to before I would give up and place her anywhere. She is attractive, shapely, inappropriately affectionate (think 2 year olds, blowing raspberries on body parts), extraordinarily strong – and easily set off if one isn’t very familiar with her. I would be scared to death to have her anywhere but at home (I have caregivers through the state after going through a Fair Hearing), not only because of the danger of sexual abuse, but also because of the very real possibility of physical abuse because of her aggression. I have lowered seizure medication doses and dc’d a few at the expense of seizure control because they turned her into a zombie. On the other hand, there have been days when I kept her sedated most of her waking hours in order to protect myself, her siblings, and her caregivers – heck, to protect HER, for that matter; she broke her own arm once throwing a tantrum. Really crummy options we have sometimes : (
“Self-aware disabled people” have been put through this as recently as the early 1990s – Google the name Annette Kalkman for details. So they have every reason to oppose this treatment.
I think I am speechless….
Congratulations on your future article, I am sure it will get rave reviews!
At first you hear about the ashly treatment and it like , that’s interesting , won’t get to big, no breasts , no monthly friend, that would make things easier, and then the thought comes to you wait a sec that’s insane …..for one thing why risk a surgery, what if for some miracle they find a cure. And then try explaining to them why they are different . … Especially when you get ” I don’t know ” from the docstors . . I would rather me go under the knife to fix my back ( hopefully later rather than sooner. ) than mutalate my. Children
Have you see the NDRN report that discusses the Ashley Treament? Also there was an interview in the UK Guardian with Ashley’s father. Growth attenuation has been done to boys in the UK. I hope you address this is an underground procedure done nation wide. There was a case in Florida where surgical nurse questioned and stopped a procedure. Clearly ethics committees are ineffectual.
You are right in railing against the Ashley treatment, but wrong in your gratuitous whack against adoptive parents. On what grounds do you say there is a visceral difference – you don’t know anything about it. You have never adopted a child and don’t know how fundamentally similar the parenting and love is.
You took one case of an adoptive parent making an unethical medical decision you profoundly disagree with, and concluded that the adoption was also at the root of the decision? Adoption had nothing to do with it – Ashley was the biological child of her parents AFAIK.
Don’t lump bad parenting with adoption.
Don’t muddy your message against growth attenuation treatment by dragging in irrelevant issues.
I don’t think SD meant his comment as a “gratuitous remark”. I think SD was trying to show how flippant this particular woman was in regards to this procedure for her son……”if the people who cried out the loudest new what is was like to really care for Tom…..”. SD was simply making a point that there are us in this community who do know what’s it like to care for these children, and we still do not agree with the procedure. Maybe it was poor taste but I think he was just trying to get attention to the logic of this woman…and meant no harm to adoptive parents. Right SD?
Absolutely Ivy. As you see in my comment, I have no issues with adoptive parents at all. I’ve considered it myself.
No, it was not gratuitous, proven by the fact that I knew I would get push back on the comment. I do honestly believe that biological mothers have a bond with their children (mostly, not 100%, nothing is) that no one else has, not even the biological father. That child came out of that woman, in every sense of the word. I saw it with my children, I see it with others, and have discussed it with adopted children, biological children, adoptive parents, etc. It has fascinated me for a long time. The journalist thought it was important enough to mention and so do I. Is it a “whack” against adoptive parents? Hell no, I have nothing but the greatest respect for parents willing and wanting to adopt, especially disabled children. But I do believe the bond, on a very deep level, is often different. I am not lumping bad parenting with adoption at all. One of the best parents I know, honestly, is a lesbian who adopted her wife’s son, she is a better parent than I am.
The mother in the post took her adopted son, apparently of a different race (why else was that fact mentioned?), to a doctor that never did this procedure on a boy like this, had no idea what would happen to his seizures or feeding, had no idea if the procedure was deemed ethical or legal, was ready to surgically fix anything that went “wrong” in her view, and had him chemically altered.
I do stand behind my discussion of “The Other” and that that plays a part. Unfortunately, in this case, the boy is the other in multiple senses: disabled, adopted, and a different ethnic / racial background.
You are being disingenuous. You are discussing a child with a disability being given a barbaric and unethical treatment. There are multiple ‘othernesses’ going on with that child, but the parents are not getting the child surgery for those.
Your focus is on the surgery. Nothing else is immediately relevant there. You ARE bashing adoptive parents by taking an extreme example and extrapolating to an unjustified (and irrelevant) generalization about adoptive parent-child bonds.
Recall that Ashley’s parents are her bio parents. Recall that abuse happens in ALL families – bio and adoptive. And close and loving bonds from the soul happen in both families.
Your saying that you have respect and blahblah for adoptive parents (and likely some of your closest friends are of X race and Y religion too) doesn’t excuse your stereotype/generalization.
Stay on message about the surgery. Leave out irrelevant (and ill informed) stereotypes about adoptive families. You’ve talked to some people, but the plural of anecdotes is not data. There are many cases of adoptive multi-race families with severely disabled children who haven’t resorted to GA surgery, but they don’t jell with your narrative.
The journalist thought the adoption and race difference were important to mention – really, and that legitimizes the viewpoint? This is the kind of thing many journalists do – sensationalize and exaggerate ‘the other’ to fit readers’ stereotypes and sell a story.
Bottom line: stay on your message about the surgery and leave adoption etc out of it. You don’t have data to conclude that adoption and race differences drive a decision to take up GA surgery for a severely disabled child.
Ashley’s parents went to a major medical institution, tried to find competent doctors (although they ended up doing illegal surgery and the primary doctor committed suicide soon after, but I digress), tried to get the approval of the ethics board, and although anonymous, fully discussed their decisions and actions to the public.
This woman treated her son worse than most would treat a pet. A doctor who admitted having no idea what would happen, having never done it, not knowing if the ethics people agreed, etc.
My focus is both on the procedures as well as the “why” of it. All questions should be on the table. I want to know why people choose to do this to their children, not only talk about the abhorrent actions. Why in the specific family involved and why in a more global sense.
Note, I never blamed anything on the adoption, I purely responded to the woman saying those such as me, Single Dad, have no “clue what it is to care for a child like” her son. I shot back with a combination of her situation, my situation, and a difference. Was I being a turd in that statement? Maybe. Was I painting a broad brush about adoptive parents? No. But you and I disagree on that. So be it.
I stated to you privately in an email, and publicly on this blog, that I had no intention to malign adoptive parents. I won’t keep repeating that, especially since you believe I am disingenuous, and I doubt I will change your mind.
But I do appreciate your comments.
Single Dad, I can’t bring myself to read the article. It really makes me nauseous. And, yes, I understand FULLY, absolutely understand why people would want to do these things. It does make it easier to care for the person. But why stop there. Amputate those limbs. With no arms and leges, it makes it even easier. No flailing arms that can hit you, or legs that can kick you, or dangle and hit anything. Don’t have to bother with shoes or pants. Just swaddle the body like an infant. It really makes care easy and you can carry it everywhere a lot easier, even just stick it in a totebag,carefully padded of couree, and what an improvement in the quality of life that would be, right?
Whole Ashley thing reminding me of decisions made for my intersex daughter as an infant (in foster care) to remove her normal testes and penis (she also had 1/2 and ovary and a vagina) and make her into a girl. That is what is done and is now the standard of care for intersex children…removal of completely healthy tissue to make a person a boy or girl in infancy to rid families of what is a “social emergency” not a “medical emergency.” Of course, as luck would have it, my daughter is a pretty typical 7 year old boy now, except for the no penis and testis part. I’m a physician, and firmly believe that no one should ever be allowed to do unnecessary, cosmetic procedures on those that lack the capacity to consent.
Always want to hear a physician’s point of view … sounds like you have a lot to offer. Thanks for the comment.
Google Brooke Greenburg. She is a sixteen year old girl with the body of a baby and they guess the cognitive understanding of a toddler. In watching video specials about her, her mother talks about dressing her as older, very specifically not as a baby because she doesn’t think it’s fair that she can’t show her age. I think she is one of the few people who can really give the other perspective to “similar cognitive and physical ages.”
Beautifully written post, SD! The Ashley Treatment and its male counterpart is deeply, horribly obscene.
Single Dad, I agree with you 100% on GA. Parents, however, are allowed to take many decisions concerning their (not necessarily disabled) children’s bodies, that are highly questionable. Sure, certain procedures are ethically repulsive, but much depends on the cultural significance society attached to them. We correctly regard GA as a mutilation, we prohibit female genital cutting, and then we permit male circumcision, for religious and cultural reasons that baby boys do not have a change to question. We permit teenage girls to undergo breast augmentation, which obscures most breast cancers, at an age when they should not make decisions that can harm their health. And the list goes on….