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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.

Thursday, March 15, 2012

The Ashley Treatment: AD in the Guardian

AD is an acronym for Ashley's dad. Yes, Ashley's dad is in the news. The Guardian has published not one but two articles about the Ashley Treatment. I suppose they did not get the memo that the Ashley Treatment is now referred to as growth attenuation. Regardless, for all those interested I urge you to read "Ashely Treatment on the Rise Amid Concerns from Disability Rights Groups" and "The Ashley Treatment: Her Life is as Good As We can Possibly Make it" published in the Guardian today.

Over the weekend I will deconstruct these articles, in particular the long email exchange with AD. This post is a tease of sorts. The Guardian will be publishing another story tomorrow with another parent that has her child subjected to the Ashley Treatment. I will however provide one short quote that indicates a great divide between those that see disability as a social malady and those that consider disability to be a medical condition. AD noted the following:

"The Ashley treatment has made her far more likely to be comfortable, healthy, and happy. Given the limitations imposed by her medical condition, her life is as good as we can possibly make it."

I have no doubt Ashley's parents lover their daughter very much. I am delighted they are providing her the very best care. However, I am taken aback by the constant medicalization of her disability. Phrases such as "given the limitations of her medical condition" are unfortunate at best. Ashley has a physical and cognitive disability, a far cry from what I think of when I hear the words medical condition. As near as I can tell, Ashley is medically stable and has been for many years. She takes only one medication. I find AD to be troublesome. I cannot begin to understand why he has rejected each and every argument presented by disability studies scholars and activists. I cannot understand why he appears to think Ashley is singularly unique. There are many parents with children similar to Ashley who would not consider growth attenuation. Why the family has utterly rejected a social model of disability and embraced a medical model is a mystery. Worse yet, AD reports what I have been hearing for the last few years. Growth attenuation has gone underground. It is quietly being performed all over the country and abroad.

That's it for now. My first teaser post. Stay tuned for more.

Wednesday, March 14, 2012

How to Die in Oregon

I finally got to watch the critically acclaimed documentary How to Die in Oregon. Based on reviews I read, I knew the documentary would be heavily skewed in favor of assisted suicide. However, I thought there would be a modicum of dissent--a few people would be given the chance to speak about why they are opposed to assisted suicide. I was wrong. The film is grossly biased in favor of assisted suicide, specifically in Oregon, the first state to pass so called death with dignity legislation. Compassion and Choices, the former Hemlock Society, figures prominently in the film. In fact I would go as far as to maintain the documentary is akin to an info-commercial for Compassion and Choices. The documentary leads the viewer to think assisted suicide was the one and only option available for those nearing the end of their life. Those opposed, Randy Stroup for instance who was denied coverage for chemotherapy, do not come across as reasonable. Statements made by Stroup such as "The guy who wrote this letter should be sent to prison for life" are not helpful.

Reviewers gush about How To Die in Oregon. For example Jeff Shannon in reviewing the documentary wrote that it was "one of the most historically significant documentaries of this still-young decade." All praise for the documentary is based on a simple premise that is not questioned: we humans have something called dignity and we want to control our lives when we are perceived to be losing said dignity. What is not addressed or even mentioned is what exactly is dignity. To me, dignity is a concept that is supposed to be utilized when moral and ethical conundrums arise that call into question basic human rights. Dignity is an extension of what we Americans love to celebrate and fiercely defend--independence. We want to control how we end our life. On the surface this makes sense. However, delve deeply into the debate surrounding assisted suicide or death with dignity and problems abound. Autonomy is tricky business.

By far the best and longest review of How to Die in Oregon was written by Jeff Shannon in the Chicago Sun-Times in May 2011. Shannon is a quadriplegic, 32 years post injury and resides in the Seattle area. In reviewing the documentary Shanon wrote about his experience as a paralyzed man encountering an expensive and inhospitable health care system:

"I've shared these personal details because my life experience -- and my near-death experience -- have convinced me that I want to exercise control over how my life ends. I want to be the one who determines when "my time" has come, even if that means dying naturally or, as some might prefer to phrase it, "letting go and letting God." I may not have a terminal illness now or later -- and I think it's appropriate that non-terminal paralysis legally disqualifies me from the option of "physician-assisted suicide" -- but I'll know when my "quality of life" has reached its lowest ebb. I've almost been there already, so I'll know, with absolute certainty, when I've truly reached that limit. I won't allow anyone else to determine what "that limit" is".

Shannon, who I met last summer and had a long chat with on the Seattle waterfront, and I share much in common but diverge in that I do not believe we are ever as autonomous as he would like to believe. Shannon seems content with the idea he will not be considered terminally ill or lacking a dignified life as a direct result of his paralysis. I do not share this sentiment. In fact I would argue in a profit driven health care system people with a spinal cord injury and others with a profound disabilities are an at risk population. By at risk I mean we may be encouraged to end our lives with "dignity". Shannon and others in favor of assisted suicide would skoff at my concerns. I would maintain John Kelly of Second Thoughts, a Massachusetts based organization against assisted suicide is correct in noting that "These bills sound good in some kind of a perfect-knowledge fantasy universe, but when we get down to real life they become a disaster".

Like it or not, the assisted suicide legislation in Oregon has had a sweeping influence on how Americans die and perceive death. Washington passed comparable legislation, Montana allows assisted suicide as a result of the Baxter Case, and other states are debating the matter (Vermont and Massachusetts). No doubt our health care system handles death and the end of life poorly but assisted suicide legislation is not the answer to improved end of life care. More to the point why do people choose to die? According to the Oregon Health Division 2011 report on Death With Dignity people sited the following:

Losing autonomy
Less able to engage in activities making life enjoyable
Loss of dignity
Losing control of bodily functions
Burden on family, friends/care givers
Inadequate pain control
Financial implications of treatment

I have experienced each and every statement above. Paralysis limits my autonomy. I cannot engage in activities I once enjoyed. I have tenuous control of my bodily functions. I have been a burden to my family and friends. I have experienced gut wrenching pain. I have spent a disproportionate amount of money on my health care. What is mising from this litany of disaster? Dignity. I have never lost my sense of dignity. Not once. But that is only how I think about dignity. There is another side to dignity--how am I perceived by others. Society has what I call selective blindness. It is very hard not to notice a wheelchair but society seems adept at ignoring the human being sitting in the wheelchair. Avoidance, stares, awkward social encounters, demeaning attitudes are all within my realm of daily experience. My self esteem takes a hit at every social transgression but I maintain a firm grasp on my dignity. When I assert myself as a person with dignity, question others when my civil rights are questioned or ignored, I win few friends and make many enemies. But that is my life, a life I accepted long ago. Who else can I rely on? Not my friends. Not my neighbors. Certainly not the government. How very American of me! Autonomous to the end. Well, sort of. Again let me quote Shannon to highlight where we diverge:

"I watched "How to Die in Oregon" twice, both viewings intensely informed and influenced by my own experience, my own life and my own opinions about how I prefer to see it end. As a quadriplegic faced with new and serious challenges, I don't feel threatened by Richardson's film because I'm not afraid of dying. I've never felt that I was "better off dead," and because I haven't "reached my limit," I have no desire, legally or otherwise, to hasten my demise. To these eyes and ears, there's nothing in "How to Die in Oregon" -- or in Oregon's law -- that suggests that I should do so."

I hope Shannon is correct. Really I do. But I do not share his sense of well being nor do I think people that viewed the documentary are well informed. Unlike Shannon, I feel threatened. In fact every time I see a physician I have never met I am fearful. I would never dream of entering an emergency room. Simply put, every time I access the health care system I am aware my presence is not wanted. I fear someone, a highly educated physician or health care worker, will decide I have suffered enough. In this scenario I will be denied life saving therapy a person that walked in the door would be given without thought. I am not exaggerating. I experienced this first hand. I have a paper coming out in the Hastings Center Report detailing my experience. I am unabashed in acknowledging my fear. It is very real and lives are at stake.