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Friday, March 16, 2012

Dueling Editorials: Singer Versus Smith and Scary Revelations

Today the Guardian followed up its story about the so called Ashley treatment with not one but two editorials. First up was Peter Singer who predictably was supportive of the Ashley Treatment. The second editorial was written by SE Smith whose work I am unfamiliar with. She was staunchly opposed to the Ashley treatment. I urge people to read both editorials.

Singer's views have not changed since he came out in favor of the Ashley treatment in 2007. In his editorial no new ground is broken. I find both editorial distressing--the tone harkens back to 2007 when news of the Ashley Treatment spread across the internet and went viral. Back then there were two schools of thought--those for and those against. Both hurled vitriol at one another. And to be blunt, I had a hand in this. At the time, I was stunned and threatened by the story and the actions taken by a reputable hospital. It took years for a more civil discussion to emerge. Here I refer to the Seattle Working Group that published a consensus piece in the Hastings Center Report. Clearly the effort to find common ground has utterly failed if today's editorials are any indication of the way people are thinking. I find this distresing but not half as chilling as another story published by the Guardian today. Here I refer to "The Ashley Treatment: Eric's Story" by Karen McVeigh. I worry the shocking revelations in this story will be lost as the pointed editorials will get all the attention.

What shocked me in "The Ashley Treatment: Eric's story?" Not the over the top effort to pull at readers heart strings. When it comes to disability this is an old well worn theme. I have grown accustom to misleading and offensive comments such as "Erica has a normal life expectancy. But her body will never grow to adult size. The treatment, which included a hysterectomy to arrest the onset of puberty, has ensured she will remain – physically – a child forever." Eric is a child like Ashley--a person with a profound cognitive and physical disability who was subjected to the same therapy. Erica's parents were advised by Ashley's parents who encouraged them to be tenacious and insistent. Erica's parents believed that the Ashley Treatment was the perfect solution for their pillow angel. In 2007 they found a physician willing to help. In 2007 Erica had a hysterectomy and breast buds removed. After surgery she was then given high doses of estrogen that attenuated her growth. According to Erica's mother "The hysterectomy was the one bit I really wanted to do. We were adamant that she didn't deserve to deal with a period all her life, because of the pain and the hormonal changes. She is not verbal and can't tell us what hurts." All this is not new regardless of whether one is for or against the procedures. This is what took me aback. I quote:

"When they approached the gynaecologist for a hysterectomy, Erica's parents asked if they had to apply for a court order, but were told they didn't need one.
"Nobody questioned it," said EM. "The gynaecologist said: 'I'll do it. When do you want to do it?' We were surprised it went as smoothly as it did. We thought the insurance company would call but they didn't. My son asked whether we needed a court order. She said 'Oh, of course not, you want what's best for your daughter'."

Erica's mother went on to state:

"Before the hormone treatment began, Erica's parents had to go before the university's ethics committee. They took Erica along with them.
They told us they would like to develop a protocol for this. There was a panel of four. We said we know she's not going to get better. We want to keep her home and give her what she needs. I remember my husband saying one day she might have to have a male caregiver and how much more vulnerable she was going to be.
It's hard to talk about it, but things happen and at least if anything happened there would not be a pregnancy. It would give her much more dignity. We said it's not for all disabled children, I remember them sitting back and smiling and saying: 'This is right for your daughter.' One of them said how much her smile said about her."

Nobody questioned a child having a hysterectomy. The parental request went smoothly. Insurance covered it without balking. This reinforces what I have been hearing for the last few years from physicians, ethicists, lawyers and disability rights activists: the so called Ashley Treatment is quietly being done. No ethics review. No legal review. No follow up research. No long range studies. Nothing. This scares me to death. How can this happen? To me the answer is simple as it is dangerous. Children with profound cognitive and physical disabilities are not fully human. They do not share same rights as children that can think and move within a broad spectrum we deem normal. These children have no bodily integrity--their bodies can be changed at the whim of parents and physicians. These children do not warrant legal protection.

Erica's parents did not need to leave the United States to have the procedures done. They were performed at the University of Minnesota. If what Erica's mother said is correct the university is trying to develop a "protocol" for the Ashley treatment. This is news to me. The justification provided by Erica's mother dismisses any argument disability rights activists, scholars and ethicists have put forth noting: "People don't understand that we are talking about a small percentage – just one percent of the disabled population with disabilities like Erica's – who would be candidates for this treatment. It's not for everyone. There are grey areas."

Where did Erica's mother get the figure of 1% from? Ashley's parents. The one percent figure does not make me feel any better. So it is okay to forever change the bodies of children with profound cognitive and physical disabilities but not the other 99% of children. What does this say about our cultural perception of disability--again it is as simple as it is complex. People with a disability are not fully human. They do not warrant the same protections as other children. By extension, I cannot help but wonder do adults with disabilities not warrant care? Are we too subject to a different set of rules, standards and civil rights? People like Singer will reply I am comparing two separate populations of people. Children like Ashley and Erica are part of the 1% and as such can be treated differently. No harm will come to me and other people with a disability because we can express ourselves and defend our rights. This argument falls flat for me. We may have spent the last 40 years enacting legislation to protect the rights of people with a disability but there is no social mandate for such laws. Given half a chance, schools, corporations, universities, hospitals and every institution I have ever come across will break the law whenever humanly possible. As my son once told me long ago "Dad, no one cares about people with a disability". For me, the Ashley Treatment demonstrates this sentiment my son recognized at the age of six. Academics call it ableism. I call it bigotry. And in America bigotry is alive and well.


lilacsigil said...

SE Smith is also a blogger who frequently writes about disability issues at This Ain't Livin".

I find it extremely disturbing that this procedure is mostly conducted on girls when the stated reason (stopping them growing so big that their family can't manage) is far more likely to be an issue. Controlling puberty and any appearance of sexual maturity in girls seems far more likely to be an issue - which sounds awfully like victim-blaming over the large proportion of disabled people who are sexually assaulted be carers in their lifetime.

Elizabeth said...

I don't know what to say. I spouted off some shit on my own blog, but I remain speechless when I really dig down deep.

Thank you for clarifying more --

Matthew Smith said...

I find it puzzling that the Guardian gets Peter Singer to contribute a supportive article about the "Ashley" treatment - he is an extremist who regards the life of lab animals like guinea pigs and rats to be of equal or greater importance to those of human beings, particularly those who are disabled. There are a whole host of people like that on the fringes of debate - among them Richard Stallman who, asked about people who published closed-source software because they need to feed their kids, said that people just shouldn't have kids. At least Stallman is famous for his earlier contributions to software and computer culture (founding the GNU project, for example) - Singer is and always was just a jerk.

Sterilisation was standard practice in some places (including Australia) for girls with much milder disabilities than "Ashley" much more recently than many people imagine - it was outlawed in Australia only in 1992, and before that it was very common. The language used, also, is highly derogatory, and the term "pillow angel" could be used for any young and bedridden person (Ashley is not bedridden) - Lynn Gilderdale and others in that condition spring to mind. The term "static encephalopathy" is being misused; it in fact means brain damage that will not get worse, and can be applied to people with cerebral palsy.

Louna said...

I often get the feeling that children with disabilities are considered cute, while adults with disabilities are considered annoying, especially when it comes to cognitive disabilities. So it makes sense to keep them like children... In the same vein, AD actually calls his daughter "a baby" at some point. I also love the argument for removing the girls' breast buds: the wheelchair straps might make them incomfortable. Seriously?

Matthew Smith said...

It's not only with cognitive disabilities - with conditions that cause disfigurement, charity publicity often focuses on the cute children before they become significantly disfigured. Our society sentimentalises children, and there are many stories of services dropping off as disabled children move into adulthood.

Catherine said...

I know personally of one case. The children of this family tend to be big, heavy kids and the child who needed total care looked like he was heading that way. It has made the care easier, and so better for the child.

A big, heavy person is not going to get as good care in an institution or from most caregivers is a fact of life. Too much work and effort to move them. I care for my MIL and mother. MIL weighs 180 lbs and my mother 70lbs. It's no contest as to who is easier to maneuver, clean and help physically. I am unable to safely move my mother in law without some sort of help. It takes more time, effort and trouble.

Still, I find it horrifying to mutilate, and yes, that is what this is, mutilation for ease of care. I find this a direct violation of the Hippocratic Oath. There are a lot of things that would make care easier, cut off the limbs, for that matter. Why not just end their lives, if difficulty of care is such an issue?

However, parents who care for such a child feel that the choice should be theirs as they are on the front line. They want total control of deciding what is ultimately best for the child.

william Peace said...

Lilacsigil, I too find it troubling the Ashley Treatment seems to be directed at young girls. If the stories in the Guardian are true that is changing. Boys have supposedly been growth attenuation.
Elizabeth, When first heard about what had been done in January of 2007 I was stunned. I wandered my house muttering to myself this cannot be true. No MD would do this. No ethics committee would approve this. Fast forward to today, and I wonder why I was so shocked. I grossly underestimated the ingrained bias against people like Ashley.
Matthew, I am delighted you replied. You are far more aware of the issues int he UK than I am from afar. Peter Singer has not added anything new to the Ashley story since it broke in 2007. An odd choice for the Guardian indeed. Your points about sterilization are well taken. We are dealing with the aftermath of this in several states, most notably North CArolina.

Catherine, I have no idea how to reply to your comment. I for one cannot imagine how any person could consider much less implement the so called Ashley Treatment. Yet, I am not one for an absolute ban. The fact the procedure has gone underground is deeply disturbing.