Yesterday I read an account of a symposium held in Seattle that dealt with the Ashley Treatment or what doctors like to call growth attenuation. The account I read was written by Emi Koyama, director of the Intersex Initative based in Portland and appeared on the website What Sorts of People. I was deeply concerned by what Emi wrote because it appears that the working group created to study the controversy surrounding the Ashley Treatment is akin to a steamroller designed to pave the way for growth attenuation. I may certainly be wrong as my knowledge of what took place at the symposium is limited to what Emi wrote. I also know that Adrienne Asch, a prominent disability studies scholar, is a member of the working group and find it hard to believe she would acquiesce to such an approach. I have been in touch with Benjamin Wilfond, a pediatrician and ethicist at the University of Washington who informs me that the symposium was taped and will be made available next week. I encourage all those with an interest in disability rights to watch what took place in Seattle when it becomes available. I will post a link when possible.
Two things struck me when I read Emi's assessment of what the Working Group has concluded. First, most members of the working group believe that growth attenuation is morally and ethically acceptable if the parents of profoundly disabled children request it. While it is possible that growth attenuation in rare cases may be ethically acceptable, the implications of this treatment and circumstances under which it is permitted are troubling. This leads me to wonder just how profoundly disabled a child must be? Are any other children aside from those with a profound cognitive disability going to be considered for such treatment? If not, what does this say about the value we place on the lives of those that have a profound cognitive disability? These are certainly important questions that must be answered. Second, I cannot help but think that the answer to enhancing the life of children with profound disabilities and their families is never going to be found stunting the growth of a child and removing body parts as was done to Ashley X. To me, the problem is largely social. We as a society must value all life and treat one and all equally. This is the ideal we must attempt to live up to. I do not care how robust informed consent is, surgery and growth attenuation does not seem like the appropriate solution. It is, for the lack of better words, simply the wrong thing to do.
My concerns are echoed by others including Emi who concluded her assessment of the symposium by writng:
I fear the social and political implications of the mainstream adaptation of growth attenuation as an ordinary part of contemporary society. I fear that what may be utility-maximizing on an individual level may, in aggregate, exacerbate the social climate where bodies, especially our crippled and queer bodies, are shaped and sculpted for the sake of social convenience and comfort. I fear that people with disabilities would be further pressured to reduce the “burden” they “impose” on the rest of the economy, and I fear that Working Group has already began going down the slippery slope, as they blur the eligibility criteria.
This conclusion is indeed a cause for concern. And I wonder if it is enough to stop doctors from attenuating the growth of children.
Friday, January 30, 2009
Thursday, January 29, 2009
Dangerous People
I just read a great three part column in the NewStatesMan by Victoria Brignell. Brignell writes a regular feature entitled "Crip's Column". I have read Brignell's columns once a while but am not a regular reader. I was very impressed with her three most recent three articles that "gives an account of the three most dangerous--yes dangerous--disabled people of all time". Her first two choices were what one would expect. Joseph Goebbels, Hitler's Minister of Propaganda, came in third. Second place went to Wilhelm II, Kaiser of Germany from 1888 who played a major role in World War I and contributed to the deaths of about 6 to 8 million people. The man that came in first was Thomas Midgley. This selection stumped me. Why was Midgeley chosen #1. He was a chemist that invented leaded gasoline. After this invention he worked on cooling system in fridges. Apparently the first fridges had chemicals that were flammable and lethal if they leaked inside the fridge. Midgely invented chlorofluorocarbons or CFCs. In the 1970s it was discovered these CFCs were destroying the crucial ozone layer and are now banned.
While I think Midgely is an unfair choice, the idea of who was the most dangerous disabled person was an interesting idea. Brignell, notes, and I agree, "bad" people are often more interesting than "good" people. Yet, I prefer to think about all those unknown disabled people that have enhanced the quality of my life. I wish these people, i.e. a man such as Edward Roberts, were well-known. Everyone knows FDR was disabled and far too many people remember Christopher Reeve. Both these men were anti-heroes to me. FDR was a complicated ambitious man that hid his disability to further his political career and quest for power. Reeve was so focused (or self absorbed) in his quest for a cure to spinal cord injury he distanced himself from other disabled people and in so doing set back disability rights by more than decade. In short, I want to know more about all those faceless and unknown men and women that advanced disability rights that do not appear in history books. I want to know what they thought and wonder how hard their lives may have been. Part of my wonderment stems from Obama's inaugural speech in which he mentioned segregation was common sixty years ago. This has in turn led me to wonder what will the life of disabled people be like in sixty years? Will access be common? Will stigma still be attached to physical and cognitive disabilities?
While I think Midgely is an unfair choice, the idea of who was the most dangerous disabled person was an interesting idea. Brignell, notes, and I agree, "bad" people are often more interesting than "good" people. Yet, I prefer to think about all those unknown disabled people that have enhanced the quality of my life. I wish these people, i.e. a man such as Edward Roberts, were well-known. Everyone knows FDR was disabled and far too many people remember Christopher Reeve. Both these men were anti-heroes to me. FDR was a complicated ambitious man that hid his disability to further his political career and quest for power. Reeve was so focused (or self absorbed) in his quest for a cure to spinal cord injury he distanced himself from other disabled people and in so doing set back disability rights by more than decade. In short, I want to know more about all those faceless and unknown men and women that advanced disability rights that do not appear in history books. I want to know what they thought and wonder how hard their lives may have been. Part of my wonderment stems from Obama's inaugural speech in which he mentioned segregation was common sixty years ago. This has in turn led me to wonder what will the life of disabled people be like in sixty years? Will access be common? Will stigma still be attached to physical and cognitive disabilities?
Monday, January 26, 2009
X Games: Mono Skiers as a Tease
What an awesome weekend I had. My son, his friends, and mine skied Saturday at Sugarbush Resort, Vermont. My son was thrilled because he skied tree trails and Mt. Ellen's black diamond slope FIS. I was happy because I got to ski with my favorite volunteer who donates her time to Vermont Adaptive Ski and Sport. I am well on my way to being an independent skier and have found the bi-ski to be the ideal rig for me. Although the correct equipment is critically important, I have found two programs, Vermont Adaptive and New England Disabled Sports at Loon Mountain, that are very different but outstanding. I will be an independent skier because I have connected with expert volunteers in Vermont and New Hampshire who have made skiing fun, improved the quality of my life, and enhanced the relationship I have with my son. In fact, I have made so much progress my son is impressed. Believe, me it takes a lot for a parent to impress his teenager!
On our drive home we each looked forward to watching the Winter X Games 13. As one would expect, our favorite event is the mono ski competition. The X Games attracts the top mono skiers in the United States and abroad. The mono ski race is intense and the athletes possess world class skills. Introduced in 2005, in 2007 the mono ski race became a medal event. This represented great progress but what separates the mono ski event from all other adaptive sports is its broad appeal. In 2008 I saw the X Games mono ski race in a New Hampshire bar replete with large flat screen TVs. I was amazed to watch not only the mono skiers but the intense interest of other people watching the X Games. The mono ski race captured the interest of every person in the bar. l recall being amazed by a huge roar when the gold medal winner KJ Van Der Klooster soared over the last jump to win the race. I wondered then if the X Games and the mono ski race could be the first adaptive event to grab and hold a wide audience. Based on my television viewing experience yesterday, the answer is an overwhelming yes.
The X Games were broadcast on ESPN between 2PM and 6PM. ESPN is part of most basic cable TV packages and widely watched by men 18 to 45 years old. We got home at 4PM and turned on the X Games. I expected the mono ski event to sandwiched between more popular events and relegated to second class status. Much to my amazement, the mono ski event was used as a teaser. The mono ski gold medal final was being used to keep viewers glued to their television sets! The mono ski event was the grand finale of the afternoon broadcast. This was a first, adaptive athletes being placed in the spot light. The announcers were excited, quick clips of the qualifying round replayed many times, the scroll at the bottom of the screen listed the athletes in the gold medal race. My son and I looked at one another and each of us felt this focus was unprecedented--the mono ski race was the center piece of a mainstream broadcast. Sadly, the gold medal race was not nearly as exciting as the qualifying races. The 2007 gold medal winner, Tyler Walker, easily won the race yesterday. Like other gold medal race winners, Walker was interviewed after the race. Not a single question related to Walker's disability. The focus was solely on his racing career, recent wins in Europe, and the gold medal race. On the ESPN website, the most popular video clip from the X Games, Winter X 13 Rollout, feature the gold medal mono ski race along with other popular events. A glance at newspapers in Vail where the X Games were held all have stories about the mono ski race. Local papers where the mono ski athletes live all had feature articles on the race.
The surging popularity of the mono ski race is having a direct impact on ski resorts. Most resorts welcome adaptive athletes and adaptive programs are rapidly expanding. While I will never be confused with a world class skier, I have noted this year that I am far from alone on the slopes. Adaptive skiers seem to be more common place. Skiers without a disability think mono skiing and the bi-ski I use are cool. In fact, I had an interesting conversation with a snow boarder who was interested in the difference between the bi-ski and mono ski. He instantly appreciated the fact bi-skiers do not posses the same elite or cool status as mono skiers. He compared this to the rivalry between skiing and snowboarding. What was of interest to me after this discussion was that my physical disability was never mentioned, not even in passing. The focus was on ski gear, how cold it was, and the condition of the slopes.
I am particularly encouraged by the coverage of the X Games and the mono ski race because it has transcended archetypical mainstream media coverage of an adaptive sporting event. In spite of how happy I am with the coverage of the X Games mono ski race, adaptive athletes face daunting problems. Foremost among them is the cost of adaptive equipment. The cost of adaptive ski equipment is so costly it hampers small programs such as Vermont Adaptive that is dedicated to getting people with disabilities out on the slopes. A bi-ski, mono ski, and dual ski, the three most common sit skis, cost between $2,500 and $4,000. A set of riggers a sit skier uses costs an additional $375. Think about this: when I go into Sugarbush Vermont Adaptive office I see 30 pairs of riggers hanging on the wall. That adds up to about $11,000 alone. For an average person such as myself, a bi-ski and riggers would cost $3,000. I would then need a season pass and winter warm weather gear none of which is cheap. The significant cost involved in adaptive skiing affects affects elite adaptive skiers as well. For instance, Kevin Bramble, a two time Paralympic gold medal winner, designer of a leading mono ski (KBG design), and leading figure in mono skiing did not medal at the X Games. Bramble had hoped to use possible X Games prize money to train at Lake Tahoe in order to practice for the Paralympic qualifier. Elite mono skiers such as Bramble lack corporate sponsors and because he did not win will return home rather than train. This is hardly a new story for adaptive athletes. It is also why the X Games have the potential to change the way adaptive athletes train and are perceived by the public. With public interest, corporations will seek out athletes such as Bramble and others because they have broad appeal. If and when this happens there will be a trickle down effect. Ordinary skiers will expect to see adaptive skiers on the slopes. Resorts will expand adaptive ski programs and create local mono ski races. Hopefully as more sit skis are manufactured the cost will decrease thus enabling more people with disabilities to ski. I hope this is more than wishful thinking in the after glow of a great weekend.
On our drive home we each looked forward to watching the Winter X Games 13. As one would expect, our favorite event is the mono ski competition. The X Games attracts the top mono skiers in the United States and abroad. The mono ski race is intense and the athletes possess world class skills. Introduced in 2005, in 2007 the mono ski race became a medal event. This represented great progress but what separates the mono ski event from all other adaptive sports is its broad appeal. In 2008 I saw the X Games mono ski race in a New Hampshire bar replete with large flat screen TVs. I was amazed to watch not only the mono skiers but the intense interest of other people watching the X Games. The mono ski race captured the interest of every person in the bar. l recall being amazed by a huge roar when the gold medal winner KJ Van Der Klooster soared over the last jump to win the race. I wondered then if the X Games and the mono ski race could be the first adaptive event to grab and hold a wide audience. Based on my television viewing experience yesterday, the answer is an overwhelming yes.
The X Games were broadcast on ESPN between 2PM and 6PM. ESPN is part of most basic cable TV packages and widely watched by men 18 to 45 years old. We got home at 4PM and turned on the X Games. I expected the mono ski event to sandwiched between more popular events and relegated to second class status. Much to my amazement, the mono ski event was used as a teaser. The mono ski gold medal final was being used to keep viewers glued to their television sets! The mono ski event was the grand finale of the afternoon broadcast. This was a first, adaptive athletes being placed in the spot light. The announcers were excited, quick clips of the qualifying round replayed many times, the scroll at the bottom of the screen listed the athletes in the gold medal race. My son and I looked at one another and each of us felt this focus was unprecedented--the mono ski race was the center piece of a mainstream broadcast. Sadly, the gold medal race was not nearly as exciting as the qualifying races. The 2007 gold medal winner, Tyler Walker, easily won the race yesterday. Like other gold medal race winners, Walker was interviewed after the race. Not a single question related to Walker's disability. The focus was solely on his racing career, recent wins in Europe, and the gold medal race. On the ESPN website, the most popular video clip from the X Games, Winter X 13 Rollout, feature the gold medal mono ski race along with other popular events. A glance at newspapers in Vail where the X Games were held all have stories about the mono ski race. Local papers where the mono ski athletes live all had feature articles on the race.
The surging popularity of the mono ski race is having a direct impact on ski resorts. Most resorts welcome adaptive athletes and adaptive programs are rapidly expanding. While I will never be confused with a world class skier, I have noted this year that I am far from alone on the slopes. Adaptive skiers seem to be more common place. Skiers without a disability think mono skiing and the bi-ski I use are cool. In fact, I had an interesting conversation with a snow boarder who was interested in the difference between the bi-ski and mono ski. He instantly appreciated the fact bi-skiers do not posses the same elite or cool status as mono skiers. He compared this to the rivalry between skiing and snowboarding. What was of interest to me after this discussion was that my physical disability was never mentioned, not even in passing. The focus was on ski gear, how cold it was, and the condition of the slopes.
I am particularly encouraged by the coverage of the X Games and the mono ski race because it has transcended archetypical mainstream media coverage of an adaptive sporting event. In spite of how happy I am with the coverage of the X Games mono ski race, adaptive athletes face daunting problems. Foremost among them is the cost of adaptive equipment. The cost of adaptive ski equipment is so costly it hampers small programs such as Vermont Adaptive that is dedicated to getting people with disabilities out on the slopes. A bi-ski, mono ski, and dual ski, the three most common sit skis, cost between $2,500 and $4,000. A set of riggers a sit skier uses costs an additional $375. Think about this: when I go into Sugarbush Vermont Adaptive office I see 30 pairs of riggers hanging on the wall. That adds up to about $11,000 alone. For an average person such as myself, a bi-ski and riggers would cost $3,000. I would then need a season pass and winter warm weather gear none of which is cheap. The significant cost involved in adaptive skiing affects affects elite adaptive skiers as well. For instance, Kevin Bramble, a two time Paralympic gold medal winner, designer of a leading mono ski (KBG design), and leading figure in mono skiing did not medal at the X Games. Bramble had hoped to use possible X Games prize money to train at Lake Tahoe in order to practice for the Paralympic qualifier. Elite mono skiers such as Bramble lack corporate sponsors and because he did not win will return home rather than train. This is hardly a new story for adaptive athletes. It is also why the X Games have the potential to change the way adaptive athletes train and are perceived by the public. With public interest, corporations will seek out athletes such as Bramble and others because they have broad appeal. If and when this happens there will be a trickle down effect. Ordinary skiers will expect to see adaptive skiers on the slopes. Resorts will expand adaptive ski programs and create local mono ski races. Hopefully as more sit skis are manufactured the cost will decrease thus enabling more people with disabilities to ski. I hope this is more than wishful thinking in the after glow of a great weekend.
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