I was having a good day until I had an early lunch. As I ate I checked out links on Facebook and came across a link provided by David Carlson of Disability Rights Washington (DRW). Carlson, as those familiar with the Ashley X case will know, was a lawyer for the WPAS now DRW. He has been and remains involved in the legal implications of growth attenuation and the so called Ashley X Case. He provided the following link to a deeply disturbing video from New Zealand: http://tvnz.co.nz/sunday-news/charley-girl-video-5974811
I decided to provide the link rather than embed the video because I find it disturbing and objectionable. The video is New Zealand version of the Ashley X case. And as hard as it is to imagine the parents actions in New Zealand are even more ethically questionable. The New Zealand case concerns Charley Hooper, a child severely disabled as a result of an accident during a home birth. The mother who is featured prominently, Jen Hooper, parrots much of what Ashley X's parents stated in 2007 and 2012. Charley Cooper was given high dose estrogen to attenuate her growth at the age of four. To obtain the estrogen the family traveled to South Korea. No hospital in New Zealand would permit such a prescription. The rhetoric spewed but Jen Hooper is offensive and does not differ substantially from what Ashley X parents have stated repeatedly. Hooper, like Ashley X parents rely on emotional arguments. Hooper insists she is not a monster and has gone public because she is concerned about the back lash from those opposed to the Ashley Treatment. Hooper's primary focus is on infantilizing her daughter Charley and insists there is no hope. Charley has the brain of a new born Jen Hooper states repeatedly. Charley's brain is static and will never change. Hooper insists Charley lacks any potential for intellectual growth or personal awareness. Hooper also mimes transhumanists in maintaining that if her daughter has the brain of a new born her body should remain as child like as possible. She gushed her husband Mark "and I were like Oh my God, this is amazing if we could do this and always be able to carry her like the new born baby her brain will always be". Hooper has no reservations and stated "I'm damned proud of what we've done. I'm incredibly proud of what we've managed to achieve for our little girl".
As I sat and watched the 17 minute news program I was stunned. The news program has been actively covering the case for a while. A film crew accompanied the family to South Korea where after a 20 minute consultation with a physician the parent were given a prescription for high dose estrogen. If Jenn Hooper is to believed this took place when Charley was four years old. The news program shows Hooper putting the first hormone patch on her daughter in what appears to be a mall. Apparently in New Zealand once hormone therapy has begun abroad it is legal to continue. Charley Hooper has been cared for by endocrinologist Paul Hofman who stated "the use of high dose estrogen to make the child smaller has justification certainly in the context of this family as they wanted to be able to look after the child for longer". Remarkably, last year at age seven Charley had a hysterectomy at Starship Hospital in Auckland, a procedure deemed reasonable by the Auckland Clinical Ethics Advisory Group. As I understand it, this was the same group that refused Hooper's request for the Ashley Treatment.
It will be interesting to see how this story plays out. The story is a month old. This is the first I have heard of it. A quick google search revealed no news stories outside of New Zealand have been published. I am sure this will change. I have no doubt Ashley X parent will have something to say. Perhaps Doug Diekema or Norm Fost will comment. While I am disturbed by this story, I think the general public will be able to see throughout the emotional manipulation and realize there is no factual basis for growth attenuation. Hooper, like Ashely X parents, are extremists. As zealots they do not question their actions. Most parents I know regularly second guess their decisions. Indeed, the more important the decision the more angst and thought parents put into a decision that will have a profound impact on their child. The assuredness Hooper and Ashley X parents possess is well outside of the norm. In Hooper's case traveling with their entire family to South Korea with a camera crew is far from typical and from my perspective reeks of self promotion. Not many parents are convinced they are correct and the entire New Zealand medical community wrong. To me this is ego run amuck. It is my hope others will see this. I also hope viewers will grasp a more subtle issue: the medical community is all to willing to perform such ethically questionable treatment on those with severe cognitive and physical deficits. While skilled within the medical sciences, health car professionals in general have a very poor understanding of disability--especially severe disability that involves both physical and cognitive deficits.
All is not gloom and doom. I was thrilled to learn the Auckland Clinical Ethics Advisory Group refused the Hooper's request for the Ashley Treatment. They concluded:
We are not satisfied that the evidence for either he social or medical benefits of the proposed interventions are clear enough to out weigh the possible burdens to this child. There exists an individual right in these patients to be protected from undue risk. There are well developed ways to manage severely disabled people in New Zealand.
I applaud the Clinical Ethics Advisory Group but I wonder if they really get it. I also sincerely doubt there are well developed social supports for severely disabled people. But this not want I want to be the take away message from this post. Disability in the broadest sense of the term is a social identity. That is the presence of a disabled person prompts a social response. For me, the reaction to my presence as a wheelchair user can lead to a wide range of responses--some positive others overwhelmingly negative. The point I am trying to make is that disability is a social state of being. The more profound and obvious the disability the stronger the reaction is likely to be. Those without a disability will quickly wonder and question how can a person with a profound disability remain independent, self reliant and autonomous. These are mythic and valued American ideals. They also reflect a narrowness of thought and an utter lack of imagination when one has a different or atypical body. Autonomy as many know is fleeting. We enter the world utterly dependent on others and many will be dependent upon loved ones at the end of life. The lack of autonomy makes us no less human. Sadly those that are not autonomous and will never be autonomous, people like Charley Hooper and Ashley X, are deeply stigmatized. In fact utilitarian philosophers openly question if thresholds for humanity exist. If such thresholds are not met personhood is not achieved thereby rendering a person non human. While this may be a rigorous and intellectually stimulating issue to grapple with I for one would prefer to spend my time advocsting for the rights of our most vulnerable citizens. And yes, Ashley X despite her cognitive limitations is very much a human being as is Charley Hooper. I take this as a given and treat such individuals with the same respect I would like to be treated with. This for some is a radical idea. A thought that has led to many sleepless nights.
25 comments:
One of a multitude of errors in this piece is that a film crew accompanied the family to Korea. Actually, the home video footage was taken by Charley's Dad at the Incheon Airport just before flying home to NZ. News of Charley's treatment was only taken to select media groups (x2) once Charley's treatment was completed late last year.
Things aren't always as they seem...
Jenn
Unknown. How is anyone to know the facts you report are supposedly truthful? By itself taking home videos implies the parents in question had larger goal in mind like the parents of Ashley X. Why approach the media at all? If growth attenuation is about individual children why the publicity?
Because the treatment did such amazing things for Charley that we wanted to share it. Watch the news clip again. It's really all in there. It's not about self promotion. We as a fmaily had nothing to gain with publicity. We wanted to share that Charley's seizures had disappeared with the very first patch - even at low dose. We wanted to let people know that Charley's dystonia left completely within about the same timeframe of just a few days. We thought parents deserved to be able to at least discuss this treatment openly with their providers, and we wanted the providers to know that nothing terrible had come from the treatment - only good.
Why should anyone doubt my 'facts' as the person that this involves but believe yours (eg the film crew in a mall) when you weren't there?
William, you're a dick. So many errors in your story you judgemental arrogant man.
Is it not obvious that the video of Charley is amateur, filmed by her parents or another family member? Charley was also born at a birth center, not at home.
I find it odd that people who claim to advocate for the rights of the disabled as individuals are unable to understand how this treatment can benefit someone as severely disabled as Charley. She has the mental capacity of a newborn. Her family is determined to give her as many experiences as possible, and I fail to see how limiting her physical size is a bad thing. She has also stopped having the near-constant seizures that were uncontrollable with medication.
I would also suggest that you do a bit of research on why she needed to be treated at such a young age. Brain injuries result in precocious puberty, which is when children have their final growth spurt. I know it suits your agenda to focus on Charley's age, but the hysteria is unfounded.
Unknown, Not a single medical journal has published an article that demonstrates growth attenuation is effective. As for the publicity, there are many ways to go about this without turning it into a TV spectacle. This says nothing of ethics committee findings or the very different experience of parents who do not seek out such a radical and ethically questionable intervention.
Nicki Smith. No idea how to respond to such a crass statement.
Moto. The television program struck me as slick and biased. I have no idea who did the filming. Thank you for noting the birth was at a center not a home. This was not at all clear to me. I have no agenda aside from working toward protecting the civil rights of all people with a disability. That would also include the bodily integrity of people with severe disabilities. I have done plenty of research on growth attenuation. Perhaps you should read my scholarly writings and think long and hard about the ethics committee findings.
Are you kidding? I haven't even got out of neutral yet. What kind of person brags about their scholarly writings when they can't even get all the facts straight before they blog? How arrogant do you sound? I have no interest in reading any of your writings, scholarly or otherwise. And talking of crass, who calls themselves bad cripple? Simply, I disagree with your point of view.
William, your comments and narrowmindedness lead me to believe that you have never spent time with a profoundly disabled person - if you had you may be better placed to advocate for their rights to be pain free, to be free of the hundreds of daily seizures, to be able to be cared for by the people who love them most in the world. You do not know the Charley or Ashley X or their parents or any of the people who are priviledged to know them. You advocate for the bodily integrity of people with severe disabilities - does this mean you are against the removal of their appendix, or a blood transfusion, or chemotherapy if that person develops cancer? How lucky you are to be able to read and write, to formulate opinions, to interact with your family, friends and the world at large through your blog. Your comments come from a place of bias - you advocate for people with physical disabilities because that is what you know and I suggest that you focus your time and energy into what you know best. Nicola Jones
Nicki, I use this blog as a vehicle for my scholarship in an effort to reach as wide an audience as humanly possible. I shoot front he hip here. So yes typos abound and I make mistakes. All of which is cleaned up and eliminated from my scholarship. This is not bragging. It is a fact. Forget my scholarship. DO not read my blog. Read the voluminous scholarship in opposition to the Ashley Treatment. A questionable and unethical bundle of procedures that should not be performed. The vast majority of bioethicists are opposed as was the ethics committee in New Zealand. Are all these people wrong? I think not.
Nic, I have been around people with severe disabilities--physical and cognitive. I reject the conception of comparative suffering you seem to embrace. The root of disability based bias affects all people with a disability. I do not know the very few parents that have chosen to attenuate the growth of their child. However, the vast majority of people in the same situation do not choose such a radical intervention. Are all those parents, the vast majority in similar situations all wrong.
As for the moniker bad cripple, I choose this for complex reasons deeply embedded in the history of disability
We just have no common ground. This discussion is not fruitful in any way.
William,
I am currently researching the topic of Growth Attenuation. You mentioned that you have not found any scientific evidence concerning the potential benefits of the "Ashley treatment". findings. Do you know of any research that has been done that has proven these treatments to have negative effects on health?
I would appreciate any information or sources you are aware of.
Carsten
Carsten, I am unaware of any research being conducted to demonstrate growth attenuation has a negative impact on a child. The 2012 Hastings Center Report called for such research. The sad fact is growth attenuation is or has become an underground procedure. Disability rights washington has vigorously followed up. Perhaps they know more and could be helpful.
Carsten there actually is well documented scientific evidence concerning the potential benefits of the "Ashley treatment", though it should also be noted that the term "growth attenuation" is far more accurate since the "Ashley Treatment" as a set of procedures was only ever used with Ashley herself. While researching Growth Attenuation for our daughter Charley we discovered that estrogen has been used for years on the smooth muscle tissue of people with asthma, lowering the muscle tone and thereby lessening the severity of an attack when one hits. What we learned from some of the 80+ children (both male and female) that have undergone growth attenuation using estrogen is that it also appears to work on skeletal muscle and connective tissue. The fact that estrogen increases bone density is also well documented - nearly all non-ambulatory people and those unable to weight bear will have osteoporosis or its precursors which would likely benefit from this well known side effect of estrogen use. For Charley we also found a marked reduction in dystonia and a complete elimination of her incredibly frequent seizures - within just 3 days of the first low starting dose. Further, if muscle spasm and tone is reduced it would be completely logical that reduction in pain can also be attributed to estrogen use as another very positive byproduct, and the vastly reduced frequency and severity of pressure sores due to a decrease in body weight is another benefit that is well known.
You won't likely find any research being conducted to demonstrate growth attenuation has a negative impact on a child. That's because science generally doesn't go about trying to prove a negative. That's just not how it works - eg research might well show the potential positive effects of using a parachute whilst falling through the sky but it doesn't need to prove the negatives of not using one... If the 2012 Hastings Report did in fact call for that it would have been a strange call. Instead, ALL effects are looked at when researching a treatment and the effects discovered along the way, both positive and negative, are reported. So far, throughout a few decades of use of estrogen associated with either asthma treatment or growth attention (performed first in the 1950s) there is yet to be one single documented case of harm or negative effect that we know of, but we are pushing where we can for more clinical research and case studies to clarify more of the potential risks and benefits of estrogen use.
I'm unsure based on past experience that this comment will ever be published by William, but if it is please feel free to contact me directly (Google is your friend!) to discuss further if you wish.
Kind regards,
Jenn Hooper, Charley's Mum
*Written very much above ground
Jenn Hooper, Would you please provide specific sources for the "well documented scientific evidence" published in peer reviewed journals you refer to.
As for the lack of harm with the use of estrogen used in the 1950s I suggest you read Normal at Any Cost by Susan Cohen and Christine Cosgrove published in 2009. Many women were directly harmed. Here is a link to a you be recording of a presentation they did at a medical school. https://www.youtube.com/watch?v=yQe6emycl2M Many advocates dismiss the profound problems experienced by women in the 1950s. Doug Diekema got this wrong in this wrong in 2006 in his first paper on the Ashley Treatment.
Your reference to supposed censorship on my part is wrong and not appreciated. I publish any comment that is appropriate and makes a contribution to a congenial discussion. I do not publish comments that fall into the realm of hate email (I do not mean to imply you have sent such email). I get a lot of hate email from people who fiercely support growth attenuation. This is why I refrain commenting on growth attenuation on my blog and the mainstream press. Exceptions such as this exist.
Thank you William for the information.
Jenn, thank you as well. As I mentioned Jenn I am doing some research on growth attenuation and I would very much like to talk to you more about your experiences with this subject. I could contact you via facebook or another means, just let me know what is most convenient for you. Thank you!
(sorry William, don't mean to use your blog as a chat board)
Carsten
Carsten, No need for an apology. Good luck with your research.
William you're a smart guy and clearly have more time than me just now. I'm sure you can manage to find links to the effects of estrogen that I mentioned. It's your blog. You have the right to publish, or not, whatever you like, but I wrote to you a few times after our initial dialogue 18 months ago and the last few weren't published. They were most definitely not threatening - that's not my style. Challenging, maybe, but not threatening, or even offensive.
Carsten like I said, Google is your friend. I'm not difficult to find. FB is fine. Whatever you like. I'm happy to talk to you. We're a pretty open book in this house. J
I will not respond in kind with a rude tone.
I have searched the medical literature for peer reviewed articles about estrogen and growth attenuation as beneficial to children. I found nothing. If you have specific articles you have found I would appreciate the references.
18 months ago I was inundated with emails about growth attenuation. It is possible I deleted or failed to notice a comment you submitted. It is because of parents who advocate for the Ashley Treatment that I have been forced to moderate comments. My opposition to growth attenuation generates hate email. I have been threatened repeatedly since 2007. I also refrain from commenting about growth attenuation in the popular press because of threatening tone of email I receive. To be very clear, I am sure you have not sent such email.
I do indeed have the right to not publish critical comments. If you look review some posts you will see I post some extremely critical comments.
Not sure how my comment was rude. You may want to reread your blogpost making direct comments about me though - pot, kettle, black comes to mind.
The papers I suggested searching for were not about the use of estrogen for GA but for asthma (tone reduction) and bone density improvement, since health benefits or harm was what Carsten had raised and what you had responded to. I'd suggest searching there.
I'm genuinely sorry to hear you received hate mail. That is never ok. We are not immune from it either, though we have not been contacted directly. Our haters seem to either comment on articles or write their own blogs about is - yes, there's more than just yours for sure. We have had comments that have brought us to tears with their kindness and understanding, as well as the complete opposite side of humanity. We've been associated with Hitler, oddly enough by the same people that say we should "just put her down" or that we should have aborted her (even though she was injured at her birth - let's not bother to actually read the article thoroughly before attacking...). Perhaps the worst that we have seen is where an Australian follower of MamaMia said that we should "take lil vege down to the local vets and ask for the best deals on euthanasia and taxidermy" so that we can have our "very own pillow-tard forever". Te ugly side of humanity has certainly shown itself to us also.
Jenn,
Rude is "you are a smart guy and clearly have more more time than me". This really turned me off.
We do not communicate well and disagree on too much to have an effective exchange. We do however have one point of agreement. Hate email is unacceptable. I am sorry we have each been subjected to this. This is wildly wrong.
I don't feel that was rude, especially when, like I said, your original post about my family and actually me specifically (where I apparently spewed and gushed, for example) was written in a much worse tone that anything I have commented with. Sounds to me like you're perhaps a wee bit over sensitive. It also appears you are unable to acknowledge when you've made a mistake (the film crew in Korea, for example) yet are quick to call out supposed unfair play and accuse people for being rude...
Disagreeing shouldn't be a reason for disengaging, surely William? After all, you're outwardly planning a book where the GA treatment (and no doubt our family) will be featured. Fairly sure that will be instigating much disagreement - just hopefully not the hate mail. Please do let me know when it's published. I look forward to reading it.
I've enjoyed the debate. I think open discussion is healthy, and so for that matter is disagreement, if done respectfully and I feel I have been reasonable for my part. I'm sorry you feel differently and wish you the best.
Jenn, I am not getting anything out of this exchange. I am not learning a thing. It has nothing to do with me being over sensitive or an inability to acknowledge mistakes, or disagreement. I typically learn much from those I disagree with but in this case I am weary of the give and take. It is just not working.
Really? You didn't learn about the positive effects that estrogen can have with tone reduction and increased bone density? You didn't learn that the reduction of pain from lowering tone is likely to be what eliminated intractable epilepsy? Or is it just that you didn't learn anything that can back up your opposition to GA treatment? Maybe that's what's not working for you. You're right to be wary of the give and take - we've given much but you're yet to accept any of it.
I saw Charleys story and was touched.
I would like to share some thoughts from my experience. I met my wife Jennifer 13 years ago and she had a severely disabled 9 year old son. She had set her entire life up to facilitate his care and to accommodate his unique needs, no one doubted that he would not have been alive without her tireless effort fighting the state for care hours, fighting to get his medical needs met at home, fighting the insurance companies to cover the out of the box medical equipment that helped him.
She knew of Ashley's case and knew Dr Gunther from Childrens. She felt that it was a smart, compassionate procedure they were performing and knew they were a loving family who were doing what they thought was best for her long term quality of life. Jennifers son was in a similar condition ( 6 month to 1 year old cognitively, g-tube, unable to walk, ACE needed for bowel movement, deaf, respiratory therapy needed, curass vent and O2 monitor used at night, seizures, severe neurological impairment that prevented learning among others ) and she had met with Dr. Gunther to get more facts and started a file to consider growth attenuation for her son. Before she could get any further the furor over Ashley stopped her chance to get it done in the small window her son had left.
I don’t claim to know nearly as much as Jennifer on this subject, she handled every aspect of caring for a severely disabled son. She did express the following:
This procedure was only appropriate for a very small and specific part of the disabled population, hence the need for family, Dr. and ethics board to agree on it. To claim it would be used on others or Down syndrome people made no sense — akin to the NRA saying we can’t outlaw machine guns because it will lead to confiscation of all guns.
This procedure and the doctors and families considering it have been villainized, often by others in the disabled community who feel they can speak for all. The truth is that these families are doing their very best to love and care for the most acute of the disabled, they worry about their future, they worry about keeping them at home, they worry about the effect all this has on their own lives and families. They deserve our compassion and real solutions. Before you judge them try spending time with them and you will probably find these parents know their own children better than anyone else.
My wife Jennifer recently passed away at the age of 52. I believe the years of stress shortened her life, effectively she sacrificed much of her life to care for her son.
He is now 21 and 6'2" with the same needs as before. He does not recognize people and I do not believe knows his mom is gone. He certainly would not have understood or cared if he was smaller. All he has is a step father who has quit work to take over as caregiver/coordinator for his other 5 in home caregivers. As I look toward a future for him I know at 57 I cannot keep this up indefinitely, the adult family homes and supported living providers I have spoke with so far all do not want to take him on. Once I give out, the only option is the state run institutions which is fighting being shut down.
Had he had growth attenuation it certainly would not have solved all our problems, but his future might look less grim.
Sorry to go on so long. I did not write this for sympathy, in fact my wife used to hate it when people said “ poor Jen, look at all she has to do with her son” She said he is just the way God made him and asked for no sympathy.
I do hope to make people think about how their actions regarding this procedure may affect others with the most acutely disabled family members. There is a broad spectrum within the disabled community, please do not judge others and their families unless you take the time to truly understand their lives.
Thanks for reading,
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