Friday, March 16, 2012

Ashley X - 'A Pillow Angel' Speaks Out, Surgeon Dies, Yet Treatment Is On The Rise

Five years ago a controversial procedure was carried out on a 9 year old American girl with severe cerebral palsy known as Ashley X. Her growth was permanently retarded, surgery performed to remove her breast buds and give her a hyserectomy keeping her in a lifelong 'Peter Pan' situation.

The Guardian has discovered that at least 12 other families are now undergoing such treatment to permanently infantalise their children. These are families who are undoubtedly doing what they perceive as being in the best interests of their children, but is that really the case? And more importantly the question we should all be asking is why families are pushed into the position that they even need to consider such radical options to prepare for the continuing care of their adult children?

I wrote the piece reproduced below in 2007, but have now discovered (H/T @NellBridges ) this first person account of Anne McDonald, herself a 'pillow angel' who's growth was retarded by neglect rather than surgery or hormones. Anne's full article is an essential yet chilling read for all of us, but particularly those charged with the care of the supposedly profoundly brain damaged. She says;

"Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, "Been there. Done that. Didn't like it. Preferred to grow."

Unlike Ashley, my growth was "attenuated" not by medical intervention but by medical neglect. My growth stopped because I was starved. St. Nicholas offered little food and little time to eat it -- each staff member had 10 children with severe disabilities to feed in an hour. That was the roster set by the state and accepted by the medical profession. Consequently my growth stopped shortly after admission. When I turned 18, I weighed only 35 pounds. I hadn't developed breasts or menstruated. I was 42 inches tall.

My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years.
In the ultimate Catch-22, the hospital doctors told the Supreme Court that my small stature was evidence of my profound mental retardation. I've learned the hard way that not everything doctors say should be taken at face value."
Read more:

Never Neverland (originally posted October 11th 2007)

 On Tuesday I asked people for their feelings about the ethical debate surrounding Alison Thorpe's wishes for her 15 year old daughter Katie to have a hysterectomy. Another mother has followed suit and is asking for doctors at Alder Hey Hospital in Liverpool to perform a hysterectomy on her 9 year old daughter Olivia. I was very specific when I asked people how they felt about this, and now it's time to think.

This issue first came to worldwide attention early this year with the case of Ashley X, the 9 year old American girl with static encephalopathy who underwent radical and non-essential surgery in 2004 at the wishes of her parents. A hysterectomy was performed upon her, her breast buds were removed and she was given hormone injections to stunt her growth.

Since then the Washington Protection and Advocacy System (WPAS) has ruled that Ashley's rights were violated by Seattle Children's Hospital who performed the surgery without a court order. The executive director of WPAS said that "Washington law specifically prohibits the sterilisation of minors with developmental disabilities without zealous advocacy on their behalf and court approval", but despite this the group have no plans to sue. In May 2007, Seattle Children's Hospital admitted they did break state law by allowing the surgery to proceed without first having a court review the proposed treatment. The hospital blames the error on "internal miscommunication"

On September 30th 2007 Dr Daniel Gunther the paediatric endocrinologist at Children's Hospital and Regional Medical Center in Seattle and associate professor of paediatrics at the University of Washington who along with his colleague Dr. Douglas S. Diekema performed the illegal surgery on Ashley X was found dead in his car. His cause of death listed as toxic asphyxia from inhaling car exhaust. Ashley's family thanked Dr Gunther on their blog back in March 2007, commending him for his "courage" and "unwavering support" They went on to say "It is our, and Ashley’s luck, that we knocked on the right door". I wonder, in the light of subsequent events, do Dr Gunther's family feel that way?

At the time the Ashley X debate was raging earlier in the year, one of the differences highlighted between the UK and the USA was that such a situation could never occur without legal approval, which is precisely what the doctors at St John's Hospital in Chelmsford consulted by Alison Thorpe are seeking. This is one of the few positives I can find in this situation as we definitely don't need another death arising from this sorry mess.

So what exactly does this mess consist of, and how have we got here? Alison Thorpe, and now Kim Walker are both asking doctors to perform hysterectomies on their respective daughters, Katie and Olivia, both mothers claiming that they want to save their daughters from the "distress" and "pain" of menstruation. Both of the mothers have ruled out other options such as the contraceptive implant, or the contraceptive pill or injection both citing concerns about thrombosis due to the girls lack of mobility, although other options which are just as effective as sterilisation, but reversible have recently been recommended by specialist doctors such as Paul Hardiman at the Royal Free and University College London for a patient in similar circumstances. Both mothers insist that only they are able to make this decision for their daughters, stating concerns about their daughters lack of dignity, inability to understand menstruation, to keep it private or discreet, Kim Walker going so far as to say;
"I can't see why they should have an opinion on it unless they are going through the same thing themselves."

Well I think that's where Mrs Walker is wrong. I think its absolutely vital each and every one of us does have an opinion on this, and everything else about disability. We're buried under a pile of politically correct nonsense which frightens everyone into silence and enables a level of discrimination and abuse to go on against a vast sector of society which if it were racist, sexist or homophobic would provoke outrage, but because its disablist no-one even notices.

Those in favour of the radical and medically unnecessary surgeries proposed for Katie and Olivia suggest that as these girls will never be able go on to have children that to take away their wombs won't matter. That is of course true for these two girls, their disability is too profound for them to experience motherhood, but there is all too often a wanton disregard for the fertility of women with disabilities, particularly in the medical profession who often make dangerous wrong assumptions about how little a disabled person's life must be worth. From their perspective. Obviously. As Simone Aspis of the United Kingdom Disabled People's Council herself said
“We know of plenty of disabled people both with physical impairments and learning difficulties who give birth to their children and are great parents. This is nothing more than eugenics and abuse of Katie’s human rights.”

The argument keeps cropping up by both these mothers and doctors trying to justify the removal of these girl's wombs that as they will not be able to understand menstruation or keep it private that it will be deeply distressing for them. Why? Is this not more to do with the distress or embarrassment the rest of us might feel rather than Katie or Olivia or any other disabled young woman likely to be subjected to this kind of abuse if we the UK follow down the path of an American surgery already deemed to have been illegal and, who knows, possibly responsible for one death. Both Katie and Olivia are already doubly incontinent and unable to manage their own bodily functions, why should menstruation be any different for them? To deny these girls the right to progress in the same way as their peers do, and to experience an event which will take them into womanhood rather than keeping them in an artificially created Neverland seems to me rather more for the convenience of society and as such obscene. Alison Thorpe talks about the activities which used to bring Katie joy, which apparently she is now becoming too big for, such as horse riding as a justification for this procedure, but at no point does anyone seem to have the courage to mention sexual pleasure. Neither of these girls will be able to experience the joys of a first date, and they are not capable of giving their consent to sex in any form, but that does not mean that they should be robbed of their ability to feel sexual pleasure, after all just because the idea of profoundly disabled people enjoying sexual pleasure is distasteful to some does not mean it is not as much their right as everyone else's. That it is not expressed in the 'typical' form does not mean it should be taken away.

That for me is the crux of this issue. The debate rages in the media, mainly focusing on the difficulties experienced by these two mothers in caring for their daughters. Quite right too. The government should be ashamed. Deeply ashamed. Carer's allowance is £48.65 a week. Social care is in meltdown. Good social workers a laughable urban myth. Equipment sold at vastly inflated prices to the most vulnerable in society. Neither of our main political parties are proposing anything realistic to change the lives of disabled people in a positive way that doesn't engender fear. Even more disgraceful as both the leaders are fathers of disabled children, and while they fight on about how best to slash the costs of the welfare bill attacking the most vulnerable and hoping to ignore the 'can work, won't work' sector of society, people like Alison Thorpe and Kim Walker look to hysterectomies as an answer to their problems, because at the end of the day, really it is their problem. Both these girls could be given alternative forms of treatment, but even I, so staunchly opposed to the choices they've made for their daughters understand why they've made it. Who doesn't? Once these girls move into the care of adult social services it will become even more difficult to extract care packages and equipment from their respective local authorities. Bigger and heavier means more difficult to lift, more difficult to care for, and brutally, disabled adults aren't all cute and deserving of sympathy from the public in the way that disabled kiddies are.

I understand the dilemma these two women face, I really do, I just think that performing this surgery will be the back door back in to the eugenics policies that were once accepted for disabled people, and what the media and wider public seem to have misunderstood is not just that disabled people are of equal value and equal citizens to everyone else, but that people with disabilities have something fantastically important to teach society. Start to mess with that and the lesson disappears, and it's not one we can afford to lose. For people with disabilities as profound as Katie and Olivia radiate love and joy of the purest kind around them, and that's something we're sorely lacking in this day and age. It's also priceless.
So, lets not forget, however much sympathy we feel for both these mothers, however much we might feel that anything that makes their lives easier can only be a good thing, already one child is forever a child, the parts of her body that would make her a woman forever removed without her consent in a surgery only judged illegal once it was too late, by an agency supposed to protect her but not be taking legal action against the hospital and a man is dead. A doctor who, whatever he did, whatever we think of it must've thought he was doing his very best for his patient, and who may have found the actual consequences just too much to bear. Peter Pan and Neverland it ain't.


Nicky Clark said...

Kaliya thank you so much for writing this. I was so angry I couldn't. As a carer we have NO RIGHT to impose any of our own views on our disabled children. NONE. We are there as a conduit to the world if necessary as an advocate if necessary and nothing else. I find the notion of inflict my views on my children as sickening and utterly lacking in integrity.

It's our own responsibility to our own bodies not the incovenience or otherwise that our child's disability causes. Tough shit frankly.

Are there challenges yes but does that gives us any right to inflict and impose a surgical sterilization turning our children into perma babies NO.

Our job is to raise them right and let them go. irrespective of their ability disability or impairment. Stories like this enhance the view of burdened saint. With a right to make our lives easier.

Sickening and wrong.

Thank you for writing this again. All love Nik xx

britishroses said...

Kaliya, this is a powerful article you have written and it needs to be in the paper! I've got goose bumps and tears from reading this, as a mother of a special needs child I find this behaviour appalling to put it nicely and could not imagine doing something like this to my child. The first I had heard about it was through Mrs Nicky Clark the other day, it's something that would never have occurred to me.

However, holding a degree in counselling and psychology I can look at both sides and empathize with the thoughts, concerns and torture of the parents of these girls. I've learnt over the years to be more open minded and have since a very young age been able to put myself in others shoes. I try not to be judgemental of others but life isn't so simple is it?

I for my own piece of mind have to believe that had the support and care that should be in place automatically for anyone with any kind of disability been there to begin with, these kind of things would not be going on. It is a sad state of affairs that in this day and age that not only are the right packages and support not put in place, but what little has been available has been snatched from under hundreds of thousands of disabled people. Fortunately, we have people like yourself, Nicky and Sue that are excellent writers, well spoken strong individuals and will help us all be stronger together. Hope I've not rambled to much, Fibro Fog has stolen my brain! Thank you. Spartacus xx

sad times said...

Responsibility and care for the cared for and the carers is hugely lacking in a professional sense. The subject is sort of'we don't talk about that,' or we do perhaps not guided or steered correctly in the profound and difficult circumstances we find our selves in.
Nobody to share and discuss because it does nt happen to the majority, so we have along long way to go.
Regardless to my own personal experience I had a neighbour with a serverly beautiful profoundly disabled daughter, who was loved, the love in the family just shone through and her mother so dedicated, quietly and proudly got on and a smile from her daughter made the day.
So much was the love they both died prematurely within hours in the same hospital I guess. The obituaries were written one week after the other.
Sometimes judgement is marred because of total lack of awareness, hence the need for blogs articles and campaign.
This little girl at the time, i was around was waved off to nursery and school on special bus proudly as any mother would do at the school gate. Words can not express the joy. Nor can words express seeing ambulance arrive when the little girl got sick.
We need to carry on and now a charge by our local council I believe is being made to parents for the much needed transport into school.
I'm angry too. We got along way to go. X x x

Looking for Blue Sky said...

I could never do anything like this to my severely disabled daughter, yet I would love for her to have remained small. I am permanently tired and both of our lives are severely restricted as a result of that and my inability to lift her now - so many of the activities that we used to do easily and that she still enjoys with help - such as swimming - are almost impossible to manage as a (lone-parent) family with two other kids, one with aspergers. Also there is the possibility of her having to go into a home one day, which would be distinctly lessened if she were easier to manage. I am getting older and tireder, it's a fact of life and while I do my best to stay fit and healthy. will I still be able to do everything I do for her at 60? At 80? I just don't know :(

hossylass said...

I have one thing to say;
Locked in syndrome.

No-one knows how much cognitive brain activity is going on for each of these children.
No decision should be made to limit any aspect of their lives until that aspect has been fully explored.

And it says it all really when they use the phrase "Pillow Angel".
Its not a pillow angel, or a cuddly toy, or your baby that you want to infantilise forever - its a fucking HUMAN BEING.

Rant over.

misspiggy said...

Any chance you could link to a non-paywall version of the 'alternatives to hysterectomy' article? Ta.