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.
Thursday, January 22, 2009
Barry Baker Update
In the last two weeks virtually no news has emerged about the death of Barry Baker. Readers will recall Baker died when two ambulance workers called to his house decided his life was not worth saving. According to news reports, the ambulance workers were appalled by the condition of Mr. Baker's house. BBC news is reporting that the two men who were arrested on suspicion of neglecting to perform a duty in public office have had their bail extended to next February. I am not sure if this extension is significant or simply common place.
Day One Obama Agenda a Home Run
Wow, it took all of one day for Obama to address disability rights. At the Whitehouse.gov/agenda website Obama has clearly spelled out four far reaching goals. I may quibble with the order but not the goals. This is exactly the sort of agenda tha can truly change the life of disabled people. Will these goals change the current situation people with disabilities find themselves in? No, but it has the potential to profoundly change the life of many disabled people in the years to come. Here are the four goals Obama will seek to address,
1. Educational Opportunities: Obama wants to fund IDEA, Individuals with Disability Act, provide early intervention for people with disabilities and empower disabled people to go to college. He also wants to make college more affordable for people with disabilities and study why so many disabled college graduates do not find employment.
2. End Discrimination: This is not possible but admirable. Obama wants to enforce and restore the ADA, make health care more affordable for people with disabilities, and end genetic discrimination.
3. Increase Employment: Obama wants to require the federal government and its contractors to employ people with disabilities. Private employers will be encouraged to hire people with disabilities by giving them tax benfits.
4. Community Based Living: To me, support for community based living should be the top short term priority of the administration. Far too many elderly and people with disabilities find themselves in nursing homes from which they never emerge. The Community Choice Act would empower many to live in their own homes as they desire.
These four goals are lofty, appropriate, and desperately needed. They can change the lives of people today, next month, and for years to come. I would have added the opposition to assisted suicide, a movement that had great success in 2008, and universal health care. However, the four goals set forth are a finite number, easily remembered, and worthy. I am energized yet again that Obama appears to the proverbial big picture in mind. Disabilities is not the only issue he seeks to address under the White House Agenda: civil rights, poverty, technology and many other issues are included.
1. Educational Opportunities: Obama wants to fund IDEA, Individuals with Disability Act, provide early intervention for people with disabilities and empower disabled people to go to college. He also wants to make college more affordable for people with disabilities and study why so many disabled college graduates do not find employment.
2. End Discrimination: This is not possible but admirable. Obama wants to enforce and restore the ADA, make health care more affordable for people with disabilities, and end genetic discrimination.
3. Increase Employment: Obama wants to require the federal government and its contractors to employ people with disabilities. Private employers will be encouraged to hire people with disabilities by giving them tax benfits.
4. Community Based Living: To me, support for community based living should be the top short term priority of the administration. Far too many elderly and people with disabilities find themselves in nursing homes from which they never emerge. The Community Choice Act would empower many to live in their own homes as they desire.
These four goals are lofty, appropriate, and desperately needed. They can change the lives of people today, next month, and for years to come. I would have added the opposition to assisted suicide, a movement that had great success in 2008, and universal health care. However, the four goals set forth are a finite number, easily remembered, and worthy. I am energized yet again that Obama appears to the proverbial big picture in mind. Disabilities is not the only issue he seeks to address under the White House Agenda: civil rights, poverty, technology and many other issues are included.
Tuesday, January 20, 2009
Obama's Inaugural Speech
My high expectation for Obama's inaugural speech were met today. Perhaps it was the occasional CNN camera on former President Bush that made me think it has been a very long time since we had a man in office that could inspire others with mere words. Today, Obama did that for me--I was inspired by his words. Regardless of one's personal and political views, all must acknowledge he is a great speaker. Today's speech was a great one and I hope it will be followed by swift, decisive actions that are equally inspiring. On this score, I worry how much one man can do. But Obama has the power of the people behind him. He is in every sense of the term a rock star, his power immense.
A good friend emailed me today and when I replied I asked about her reaction to Obama's speech. She did not bother to listen. I was incredulous. History, I said, was made. A black man is the President. To me, this is proof positive this nation has changed. I told my friend Obama is more than our first black president. He is more than a gifted speaker. He is more than inspiring. I hope he is the man to bring about the changes he promised the last two years. I think he could be the man. The man that will push the government and cynics such as my friend to be energized. We are emerging from an eight year span in which the worlds wealth has been diverted into the hands of a tiny minority of people and corporate entities. Our government operated under a business model that not only failed but was corrupt, ethically bankrupt. In its place we have a man that may be truly special. Obama promised that:
We will restore science to its rightful place, and wield technology's wonders to raise health care's quality and lower its cost. We will harness the sun and winds and the soil to fuel our cars and run our factories. And we will transform our schools and colleges and universities to meet the demands of a new age. All this we can do. And all this we will do.
These are wonderful sentiments, things we should indeed aspire to. More than words Obama also noted that:
What is required of us now is a new era of responsibility--a recognition, on the part of every American, that we have duties to ourselves, our nation, and the world; duties that we do not grudgingly accept but rather seize gladly, firm in the knowledge that there is nothing so satisfying to the spirit, so defining of our character, than giving our all to a difficult task. This is the price and promise of citizenship.
Obama's views express why I am hopeful and committed. I will continue to write, piss off people that violate my civil rights as a crippled man, and push for those with disabilities I have never met. I do this in the hope that in 60 years the life of other crippled men will not be like mine. These cripple men, women, and children will shake their head and wonder why was the unemployment rate among disabled people 70% They will read about buildings that were not accessible. They will be appalled that health care was unaffordable, people forced into nursing homes because no community support existed. They will read about institutions that no longer exist, razed and replaced by new schools and accessible homes. They will gasp in disbelief that people with cognitive and physical disabilities were stigmatized. So today, I dream of a country that for me does not exist yet. But one that Obama has at least helped me dream about.
A good friend emailed me today and when I replied I asked about her reaction to Obama's speech. She did not bother to listen. I was incredulous. History, I said, was made. A black man is the President. To me, this is proof positive this nation has changed. I told my friend Obama is more than our first black president. He is more than a gifted speaker. He is more than inspiring. I hope he is the man to bring about the changes he promised the last two years. I think he could be the man. The man that will push the government and cynics such as my friend to be energized. We are emerging from an eight year span in which the worlds wealth has been diverted into the hands of a tiny minority of people and corporate entities. Our government operated under a business model that not only failed but was corrupt, ethically bankrupt. In its place we have a man that may be truly special. Obama promised that:
We will restore science to its rightful place, and wield technology's wonders to raise health care's quality and lower its cost. We will harness the sun and winds and the soil to fuel our cars and run our factories. And we will transform our schools and colleges and universities to meet the demands of a new age. All this we can do. And all this we will do.
These are wonderful sentiments, things we should indeed aspire to. More than words Obama also noted that:
What is required of us now is a new era of responsibility--a recognition, on the part of every American, that we have duties to ourselves, our nation, and the world; duties that we do not grudgingly accept but rather seize gladly, firm in the knowledge that there is nothing so satisfying to the spirit, so defining of our character, than giving our all to a difficult task. This is the price and promise of citizenship.
Obama's views express why I am hopeful and committed. I will continue to write, piss off people that violate my civil rights as a crippled man, and push for those with disabilities I have never met. I do this in the hope that in 60 years the life of other crippled men will not be like mine. These cripple men, women, and children will shake their head and wonder why was the unemployment rate among disabled people 70% They will read about buildings that were not accessible. They will be appalled that health care was unaffordable, people forced into nursing homes because no community support existed. They will read about institutions that no longer exist, razed and replaced by new schools and accessible homes. They will gasp in disbelief that people with cognitive and physical disabilities were stigmatized. So today, I dream of a country that for me does not exist yet. But one that Obama has at least helped me dream about.
Thursday, January 15, 2009
Obama Inaugural Lies
For months I heard the incoming Obama administration describe the forthcoming inaugural as the most accessible in US presidential history. In the last week I heard a very different story about the inaugural emerge. Millions of people are expected to attend, the weather is projected to be cold, and security overwhelming. Bridges will be shut down, cars banned in a two mile radius of the Capital, elevators will be shut off, and mass transportation at crush capacity. The Presidential Inaugural Committee has not minced words: people with disabilities, the elderly, and small children will encounter numerous and overwhelming obstacles. According to Carole Florman, who I have sarcastically dubbed Ms. Sensitivity, the inaugural committee is "trying to paint a realistic picture". My fellow blogger Steve Kuusisto at Planet of the Blind has translated this statement into plane english:if you are disabled or elderly do not come to the inaugural. Yes, we get the message.
None of the above differs from what I have already written. Two things have changed: first, a few media outlets are picking up on this story. The Associated Press published a story today that contained a statement from the Presidential Inaugural Committee that is not just wrong but grossly misleading. No, Ms. Sensitivity did not put her foot in her mouth again. This time it was Kevin Griffis, a fellow committee member who stated "At every event that the Obama campaign did during the election, we wanted to be sure to be welcoming to Americans with disabilities, so this is not something new for us. I think just the scale is larger". This statement brings me to my second point. Mr. Griffis statement about access is as absurd as it is false. Multiple campaign events were not accessible. I know because I tried to attend several in the metropolitan area and they were not accessible. Other disabled people had the same problem. When I contact the the Obama campaign I was told access was not their responsibility and now the very same people are trying to tell me that insuring events are accessible is nothing new?
The lack of access at the inauguration is disheartening. Obama was swept into office promising change and his message was embraced by people with disabilities. Having a president that understands disability has energized many, myself included. Perhaps this is why I am so upset, campaign events were not accessible and now the inauguration presents identical access issues. This sort of disconnect is not uncommon. Large corporations often boast about access and use disabled people as part of their advertising campaigns. Yet, when a person with a disability appears nothing is easy and barriers are common place. For instance, Avis rent-a-car had an ad campaign that featured a disabled business man renting a vehicle who was all smiles. This was great advertising but the problem was it was divorced from my experience. When I made reservations with Avis the car with hand controls was rarely ready when I arrived. As I waited for my car I watched dozens of people leave and I assure you I was not smiling. I was just pissed off.
There is still time for the inauguration to be made accessible and inclusive. However, time is growing short. I am sure many people with disabilities will try to attend and I wish them luck. Organizers have included accessible bleachers and raised platforms at the National Mall. I just hope people with disabilities can get to these locations. If not I am reminded of my days at Columbia University where I earned my PhD. When I was a graduate student the Office for Students with Disabilities was in a building that was completely inaccessible. When I expressed my dismay to the administration they thought the lack of access was a technical problem, one that highlighted the barriers on campus. I hope the Obama administration does not use the same thought process.
None of the above differs from what I have already written. Two things have changed: first, a few media outlets are picking up on this story. The Associated Press published a story today that contained a statement from the Presidential Inaugural Committee that is not just wrong but grossly misleading. No, Ms. Sensitivity did not put her foot in her mouth again. This time it was Kevin Griffis, a fellow committee member who stated "At every event that the Obama campaign did during the election, we wanted to be sure to be welcoming to Americans with disabilities, so this is not something new for us. I think just the scale is larger". This statement brings me to my second point. Mr. Griffis statement about access is as absurd as it is false. Multiple campaign events were not accessible. I know because I tried to attend several in the metropolitan area and they were not accessible. Other disabled people had the same problem. When I contact the the Obama campaign I was told access was not their responsibility and now the very same people are trying to tell me that insuring events are accessible is nothing new?
The lack of access at the inauguration is disheartening. Obama was swept into office promising change and his message was embraced by people with disabilities. Having a president that understands disability has energized many, myself included. Perhaps this is why I am so upset, campaign events were not accessible and now the inauguration presents identical access issues. This sort of disconnect is not uncommon. Large corporations often boast about access and use disabled people as part of their advertising campaigns. Yet, when a person with a disability appears nothing is easy and barriers are common place. For instance, Avis rent-a-car had an ad campaign that featured a disabled business man renting a vehicle who was all smiles. This was great advertising but the problem was it was divorced from my experience. When I made reservations with Avis the car with hand controls was rarely ready when I arrived. As I waited for my car I watched dozens of people leave and I assure you I was not smiling. I was just pissed off.
There is still time for the inauguration to be made accessible and inclusive. However, time is growing short. I am sure many people with disabilities will try to attend and I wish them luck. Organizers have included accessible bleachers and raised platforms at the National Mall. I just hope people with disabilities can get to these locations. If not I am reminded of my days at Columbia University where I earned my PhD. When I was a graduate student the Office for Students with Disabilities was in a building that was completely inaccessible. When I expressed my dismay to the administration they thought the lack of access was a technical problem, one that highlighted the barriers on campus. I hope the Obama administration does not use the same thought process.
Subscribe to:
Posts (Atom)