I read yet another article in the New York Times that misconstrues the basic meaning of disability. The article in question was in the business section which I try to avoid because it is so depressing to read how the economy continues to decline at an alarming and never ending rate. Regardless, the article, "Marketers Lend Voices to Show Support for the Disabled" is less about marketing than it is about charity. Apparently as the economy has collapsed people surveyed think large corporations need to be more charitable and responsive to communities. Corporations have heard the demand for a more altruistic approach to business and have decided to help. Who do corporations want to help? We crippled people! Thank God Almighty we are saved!
According to Toys "R" Us senior vice-president the company is "continually seeking to find ways to be part of the family dynamic, from birth to pre-teenage". What exactly is Toys "R" Us doing? They are supporting Autism Speaks via a campaign centered on a collection of photographs titled "Faces of Autism". Another company mentioned in the article, American Airlines, has announced plans to honor the best television commercial featuring what are deemed "positive portrayals of the disabled". The winning spot will get free air time during the airline's in flight entertainment programming.
I am not opposed to either effort by Toys "R" Us or American Airlines. But these efforts are devoid of reality in my opinion. Shopping at Toys "R" Us as anyone with young children knows is a miserable experience. More to the point, I have not seen an employee at Toys "R" Us with a disability for more than a decade. Long ago the local Toys "R" hired people with cognitive disabilities but I have not observed anyone with a disability employed by this company. As for American Airlines, I would prefer the airline spend less time thinking about the imagery of people with a disability. I for one would like to be able to enter and exit an aircraft promptly. That rarely if ever happens when I fly. A host of law suits filed year in and year out against major carriers such as American Airlines is proof positive services for people with a disability is simply not a priority. At least now, I can watch something while I wait, and wait, and wait, and wait for a trained employee to assist me on and off an airplane.
Perhaps I am too grumpy. I got sick with a urinary tract infection over the weekend and spent much of Sunday in an Emergency Room. I still feel like I got hit by a truck. Yet, I cannot help but maintain that NYT article discussed above is all about charity and money. I have nothing against charity, well maybe a little, but I am much more of a practical person. I would rather see Toys "R" Us hire a person with a cognitive disability than put a photograph on the wall. I would rather have American Airlines provide adequate service, not good service, adequate service for passengers with disabilities. Go ahead and call me a grump.
Tuesday, March 31, 2009
Saturday, March 28, 2009
Life After Spinal Cord Injury
The print media is dying because I am among the millions or people that see no reason to purchase a newspaper unless I want to start a fire. Yet I wonder and worry about how people will access the news in the future. Today, is one of the days I am very worried because I just read and watched the New York Times on line series "Patient Voices", part of the NYT Well Blog. The March 26 story was entitled "Voices After Spinal Cord Injury" and featured four men and two women that experienced spinal cord injuries. The story annoyed me greatly for a number of reasons large and small.
First, the people chosen were not your archetypical person with a spinal cord injury. Most appeared to own beautiful homes, that is expensive, replete with access features like an elevator. Others were portrayed getting into cars with an elaborate lift or wearing obviously expensive clothing. This is not the norm, indeed, this is well outside of the norm. For instance, one man, Francesco Clark, a resident of Bronxville, has been profiled in the NYT in the past. He comes from a wealthy family and is active in the Christopher Reeve Foundation. I do not begrudge these men and women their wealth. I am merely pointing out that the vast majority of people with a spinal cord injury do not possess such wealth and struggle financially.
Second, the entire focus of the story is negative. The people portrayed are considered "patients" who "suffered" a "tragic" injury in the "prime of their lives". The mere fact they are alive and not sitting in a room crying is amazing, "inspiring", and a "reminder of the strength of the human spirit". Oh, please spare me from such trite and antiquated beliefs about the nature of disability. This stereotypical portrait of disability is not just dehumanizing but at odds with reality as I have known it for the last 30 years. You see, I do not consider myself to be one iota different than any other human being than walks. Most people I know that are paralyzed feel the same way. We crippled people have rights, civil rights, and are not afraid to assert them. Get over it.
Third, sentences such as the following miss the point badly and are misleading: "Life after spinal cord injury is filled with the challenge of accepting your injury, coping with your limitations and adjusting to an entirely new way of seeing the world". I assure readers "accepting your injury" is pretty simple when you have no choice. One can feel sorry for themselves and waste their life or accept the fact one will never walk and adapt. I chose to adapt as do virtually all those that experience a spinal cord injury. Only the media likes to focus on those few that can think of nothing else but walking. Why does the media do this? It reinforces the social superiority of those that can walk and provides the rationale for exclusion. As for "coping with your limitations", this does not take long. Once medically stable, most people that experienced a spinal cord injury are self sufficient within months. Much depends upon the level of injury and, sadly, the level of health insured. Being paralyzed I can state without a shadow of a doubt is expensive. But "coping" is the wrong word to use. People, all people, adapt to different circumstances and life after a spinal cord injury is all about adapting. The big difference in adapting after spinal cord injury is that it is a one way street: people who have a spinal cord injury are expected, demanded, to adapt. Our culture does not. Sure we have laws such as the ADA but equal access for those that use a wheelchair is not valued or is perceived to be a choice. Finally, as to "adjusting to an entirely new way of seeing the world" why should the view of the world be any different? Sure I have a physically lower perspective sitting in my wheelchair but the real change is social. I see the world just fine but the way I am perceived has been radically altered. I am part of a the largest most disenfranchised minority group in the world. If I were disabled in a Third World country the odds are good I never would have celebrated my 21st birthday because I would not have survived. This is a human rights travesty few know about. In the United States most people who have a disability, 70%, are unemployed. Mass transportation remains difficult to access and few homes are constructed that are accessible. Durable medical goods cost a fortune and most people with a high level of paralysis live in a nursing home. This I assure is what changes your view of the world. The social obstacles that are built into the structure of our society are the real issue not paralysis from a spinal cord injury.
There was one positive element of the NYT story. I was expecting the comment section to be filled with observations about the men and women in question and how they had "overcome" disability. Much to my chagrin, many of those that took the time to post a comment were as critical as I was. Perhaps progress is occurring. Too bad this point eluded the NYT.
First, the people chosen were not your archetypical person with a spinal cord injury. Most appeared to own beautiful homes, that is expensive, replete with access features like an elevator. Others were portrayed getting into cars with an elaborate lift or wearing obviously expensive clothing. This is not the norm, indeed, this is well outside of the norm. For instance, one man, Francesco Clark, a resident of Bronxville, has been profiled in the NYT in the past. He comes from a wealthy family and is active in the Christopher Reeve Foundation. I do not begrudge these men and women their wealth. I am merely pointing out that the vast majority of people with a spinal cord injury do not possess such wealth and struggle financially.
Second, the entire focus of the story is negative. The people portrayed are considered "patients" who "suffered" a "tragic" injury in the "prime of their lives". The mere fact they are alive and not sitting in a room crying is amazing, "inspiring", and a "reminder of the strength of the human spirit". Oh, please spare me from such trite and antiquated beliefs about the nature of disability. This stereotypical portrait of disability is not just dehumanizing but at odds with reality as I have known it for the last 30 years. You see, I do not consider myself to be one iota different than any other human being than walks. Most people I know that are paralyzed feel the same way. We crippled people have rights, civil rights, and are not afraid to assert them. Get over it.
Third, sentences such as the following miss the point badly and are misleading: "Life after spinal cord injury is filled with the challenge of accepting your injury, coping with your limitations and adjusting to an entirely new way of seeing the world". I assure readers "accepting your injury" is pretty simple when you have no choice. One can feel sorry for themselves and waste their life or accept the fact one will never walk and adapt. I chose to adapt as do virtually all those that experience a spinal cord injury. Only the media likes to focus on those few that can think of nothing else but walking. Why does the media do this? It reinforces the social superiority of those that can walk and provides the rationale for exclusion. As for "coping with your limitations", this does not take long. Once medically stable, most people that experienced a spinal cord injury are self sufficient within months. Much depends upon the level of injury and, sadly, the level of health insured. Being paralyzed I can state without a shadow of a doubt is expensive. But "coping" is the wrong word to use. People, all people, adapt to different circumstances and life after a spinal cord injury is all about adapting. The big difference in adapting after spinal cord injury is that it is a one way street: people who have a spinal cord injury are expected, demanded, to adapt. Our culture does not. Sure we have laws such as the ADA but equal access for those that use a wheelchair is not valued or is perceived to be a choice. Finally, as to "adjusting to an entirely new way of seeing the world" why should the view of the world be any different? Sure I have a physically lower perspective sitting in my wheelchair but the real change is social. I see the world just fine but the way I am perceived has been radically altered. I am part of a the largest most disenfranchised minority group in the world. If I were disabled in a Third World country the odds are good I never would have celebrated my 21st birthday because I would not have survived. This is a human rights travesty few know about. In the United States most people who have a disability, 70%, are unemployed. Mass transportation remains difficult to access and few homes are constructed that are accessible. Durable medical goods cost a fortune and most people with a high level of paralysis live in a nursing home. This I assure is what changes your view of the world. The social obstacles that are built into the structure of our society are the real issue not paralysis from a spinal cord injury.
There was one positive element of the NYT story. I was expecting the comment section to be filled with observations about the men and women in question and how they had "overcome" disability. Much to my chagrin, many of those that took the time to post a comment were as critical as I was. Perhaps progress is occurring. Too bad this point eluded the NYT.
Thursday, March 26, 2009
Kareem Dale and Add On Duty
Kareem Dale is in the news. Dale is Obama's "special assistant to the president for disability policy". Dale's position was heralded by the Vice-President Biden as proof that for the first time in history disability rights would be a major priority of a presidential administration. Fast forward a month, and Dale was appointed another job, "White House staff advisor on the arts and culture". As I have already noted, I am confused and worried. Exactly what is Dale's job? Is he supposed to focus on disability or the arts? Is he supposed to do both jobs?
I had hoped that Dale would clarify his position at the White House when he was interviewed on March 24 by Disability Scoop. Yet, not a word was mentioned about his dual position as the disability and arts advisor in the White House. I expected and hoped this would be the first question Dale would be asked given the fact Disability Scoop is one of the premier sources for disability news. Disability Scoop really missed the ball in their interview. Perhaps this critique is unfair as no one seems to be forthcoming about exactly what Dale's job is. The most critical article published to date was written by Deanna Isaacs today at the Chicago Reader. Entitled "One Salary Saved: Who's poised to be Obama's arts advisor? His disabilities advisor" Isaacs asks the hard question that no one in the disability or arts community has been willing to ask: What is Dale's top priority, the arts or disability?
As of today, there has been no official announcement of Dale's arts appointment. Isaac speculates that the Obama administration may be rethinking this dual appointment. Isaacs has sought clarification from the White House and her calls and emails have been ignored. Eventually Isaac reports one staffer told her someone will contact her "when she has guidance for you". Isaac, like many others, would like a clear and concise answer. Unfortunately the White House is sending mixed messages to people in the arts and disability community and this has muddied an already confusing conundrum. Both those is the arts and disability community have been painfully polite. Andrew Imparto, president of the American Association of People with Disabilities thinks Dale's dual position could be "a mixed bag" and that "with disability issues alone" Dale has a "pretty full plate". I can readily understand why Imparto and others in the arts and disability community do not want to chastise President Obama for straddling the fence with Dale's dual appointment. If I were involved I would not want to risk alienating anyone in the White House. But I am not involved and, like Isaac I want an answer. Which is the top priority for Dale--the arts or disability? No single person can do both jobs well. One community will suffer. Like it or not that is just the way it is. Thus I admire the final sentence in Isaacs article: "Disability and the arts each need their own point person. Fix it". I could not agree any more" Please fix this mess President Obama.
I had hoped that Dale would clarify his position at the White House when he was interviewed on March 24 by Disability Scoop. Yet, not a word was mentioned about his dual position as the disability and arts advisor in the White House. I expected and hoped this would be the first question Dale would be asked given the fact Disability Scoop is one of the premier sources for disability news. Disability Scoop really missed the ball in their interview. Perhaps this critique is unfair as no one seems to be forthcoming about exactly what Dale's job is. The most critical article published to date was written by Deanna Isaacs today at the Chicago Reader. Entitled "One Salary Saved: Who's poised to be Obama's arts advisor? His disabilities advisor" Isaacs asks the hard question that no one in the disability or arts community has been willing to ask: What is Dale's top priority, the arts or disability?
As of today, there has been no official announcement of Dale's arts appointment. Isaac speculates that the Obama administration may be rethinking this dual appointment. Isaacs has sought clarification from the White House and her calls and emails have been ignored. Eventually Isaac reports one staffer told her someone will contact her "when she has guidance for you". Isaac, like many others, would like a clear and concise answer. Unfortunately the White House is sending mixed messages to people in the arts and disability community and this has muddied an already confusing conundrum. Both those is the arts and disability community have been painfully polite. Andrew Imparto, president of the American Association of People with Disabilities thinks Dale's dual position could be "a mixed bag" and that "with disability issues alone" Dale has a "pretty full plate". I can readily understand why Imparto and others in the arts and disability community do not want to chastise President Obama for straddling the fence with Dale's dual appointment. If I were involved I would not want to risk alienating anyone in the White House. But I am not involved and, like Isaac I want an answer. Which is the top priority for Dale--the arts or disability? No single person can do both jobs well. One community will suffer. Like it or not that is just the way it is. Thus I admire the final sentence in Isaacs article: "Disability and the arts each need their own point person. Fix it". I could not agree any more" Please fix this mess President Obama.
Tuesday, March 24, 2009
Community Choice Act and Who is Disabled
Yesterday I got a few emails about the Community Choice Act. I have written about the CCA in the past. Today, Iowa Sen. Harkin and Illinois Congressman Davis will join disability rights activists and introduce the CCA. In the view of many, the CCA is needed to empower people with a disability. The CCA will provide disabled people an opportunity to live as independently as humanly possible and overcome needless social and economic barriers that force people into institutions. Essentially the CCA eliminates the nursing home mentality and bias. The CCA permits people with disabilities who need assistance the choice of receiving services and support in their home or community rathe than an institution.
I have no idea if the CCA will be made the law. Sadly, I am not hopeful in large part because the meaning of disability and its social consequences is not well understood. In calling for the passage of the CCA Nick's Crusade wrote the following:
Who is more disabled? The successful banker who happens to be quadriplegic, and gets up each weekday (with the help of assistants) and goes to work, contributing to the community and pulling down over $100,000 a year? Or the dude who still lives in his mom’s basement, who can do chin-ups, run and jump, but is unwilling or unable to contribute to society? Who is more disabled?
Anyone who uses a wheelchair is the archetype for disability. I am that archetype and yet in many ways I am not disabled in any way. Sure I cannot walk but walking is overrated and my wheelchair is an empowering adaptive device. The inability to walk has not prevented me from doing any of the things I wanted to do. I got married (and divorced), had a child, and remain steadily employed. The problems I have encountered since I began using a wheelchair are man made--American culture imposes social, economic, and political hardships on top of an existing physical deficit, in my case paralysis. The CCA will go a long way to undermine the hardships people with a disability encounter. The CCA will empower people with a disability so that they can be an integral part of their community. It will help prevent people with a disability from needlessly ending up in an institution. This is great but requires a more nuanced view of the social implications of disability. I hope people are willing to listen to Sen Harkin and Congressman Davis and I wish them well today.
I have no idea if the CCA will be made the law. Sadly, I am not hopeful in large part because the meaning of disability and its social consequences is not well understood. In calling for the passage of the CCA Nick's Crusade wrote the following:
Who is more disabled? The successful banker who happens to be quadriplegic, and gets up each weekday (with the help of assistants) and goes to work, contributing to the community and pulling down over $100,000 a year? Or the dude who still lives in his mom’s basement, who can do chin-ups, run and jump, but is unwilling or unable to contribute to society? Who is more disabled?
Anyone who uses a wheelchair is the archetype for disability. I am that archetype and yet in many ways I am not disabled in any way. Sure I cannot walk but walking is overrated and my wheelchair is an empowering adaptive device. The inability to walk has not prevented me from doing any of the things I wanted to do. I got married (and divorced), had a child, and remain steadily employed. The problems I have encountered since I began using a wheelchair are man made--American culture imposes social, economic, and political hardships on top of an existing physical deficit, in my case paralysis. The CCA will go a long way to undermine the hardships people with a disability encounter. The CCA will empower people with a disability so that they can be an integral part of their community. It will help prevent people with a disability from needlessly ending up in an institution. This is great but requires a more nuanced view of the social implications of disability. I hope people are willing to listen to Sen Harkin and Congressman Davis and I wish them well today.
Monday, March 23, 2009
Get Over it: But What are We Getting Over?
President Obama has taken some heat over his bad special olympics joke on the tonight Show. The criticism Obama has been subjected to has not resonated with the general public and most political commentators. The Wall Street Journal lamented the fact Obama was "getting lashed by the political correctness police". The Washington Times chimed in that Obama's joke was a "ginned-up controversy" from the forces of "political correctness. A quick google search will reveal thousands of articles have appeared in the last few days and based on a random sampling one could easily conclude people with a disability are humorless people. One theme comes through loud and clear: Get over it! It was a bad joke and nothing more than that. People with a disability cannot take a joke and are hyper sensitive.
I think I have a pretty good sense of humor. I also think disability can be very funny and more than one student has told me I am an entertaining lecturer. So, have I missed the point with regard to Obama's attempt at humor? In a word, no. Obama's joke, like the Saturday Live Skit lampooning Governor Patterson a few months ago, is not funny because it is based on a stereotype. The stereotypical assumption is that special olympics athletes are inept mentally and physically. This is not true. Some special olympians are gifted bowlers. How do I know this? Unlike most Americans I have watched the Special Olympics. My viewpoint is based on fact not an antiquated stereotype.
To date, I have come across just one insightful critique of the controversy Obama created with his so called joke. On the blog Wheelie Catholic Gary Karp commented on an entry entitled "The Question". Gary Karp lamented the fact that Obama's special olympic quip overran a key point he wanted to get across when he was able to ask the President a question about disability at a town hall meeting. Gary Karp is correct: Obama's joke about the special olympics has generated a lot of press most of which is not good for reasons I mentioned above. Karp wants the focus to be on whether a "true renaissance in the lives of people with disabilities" has taken place. In a remarkably astute observation Karp began his question to the President of the United States by stating:
Sir, my question regards the true renaissance that’s happening with people with disabilities. They are an emerging population — millions of people with more potential in capacity, more mobile, more educated, more healthy, more empowered technology, but still trapped in very, very old social models that see them in terms of tragedy and charity and need and care. And the modern population of people with disabilities simply does not fit that model.
Amen! Boy, I wish I could have been with Karp when he said this. I doubt I could have been as articulate, polite, and on point if given an opportunity to ask the President a question. Karp is correct about people with a disability as being an emerging population that are trapped by antiquated notions about the meaning of disability. In the last two decades more people with a disability are able to access an equal education and schools are becoming better at dealing with students that have cognitive and physical disabilities. But one thing has not changed as rapidly: the unemployment rate among people with a disability is staggeringly high. To me, this is a clear sign that people with a disability encounter an overwhelming social bias when they try to enter the work force. Given the choice between a qualified person with and without a disability I suspect most employers will choose the person without a disability. This is a significant problem and as the economy has nose dived in the last year the people who have struggled the most include those with a disability. Thus, Karp asked the President how will his economic stimulus package "release the emerging potential that's currently wasted and untapped?"
How indeed will the economic stimulus package empower people with a disability? This is a story I would like to see the Wall Street Journal cover. People bemoan the high rate of unemployment but no national outcry or debate has taken place with regard to why people with a disability are unemployed in overwhelming numbers. Instead, people with a disability that assert their civil rights are considered to be "difficult" or have a "chip on their shoulder". In the case of the special olympics joke people with a disability are considered "humorless" and "politically incorrect" when they object to baseless stereotypes. How exactly are people with a disability supposed to succeed? The mainstream media is quick to exploit great visuals of a person with a disability doing something "remarkable" that reinforces the well worn idea of people "overcoming: their disability. Yet no stories emerge about the ordinary person with a disability that simply wants to have a job, career, family and community in which they are treated equally. The reasons why this is so difficult is worthy of sober study.
I think I have a pretty good sense of humor. I also think disability can be very funny and more than one student has told me I am an entertaining lecturer. So, have I missed the point with regard to Obama's attempt at humor? In a word, no. Obama's joke, like the Saturday Live Skit lampooning Governor Patterson a few months ago, is not funny because it is based on a stereotype. The stereotypical assumption is that special olympics athletes are inept mentally and physically. This is not true. Some special olympians are gifted bowlers. How do I know this? Unlike most Americans I have watched the Special Olympics. My viewpoint is based on fact not an antiquated stereotype.
To date, I have come across just one insightful critique of the controversy Obama created with his so called joke. On the blog Wheelie Catholic Gary Karp commented on an entry entitled "The Question". Gary Karp lamented the fact that Obama's special olympic quip overran a key point he wanted to get across when he was able to ask the President a question about disability at a town hall meeting. Gary Karp is correct: Obama's joke about the special olympics has generated a lot of press most of which is not good for reasons I mentioned above. Karp wants the focus to be on whether a "true renaissance in the lives of people with disabilities" has taken place. In a remarkably astute observation Karp began his question to the President of the United States by stating:
Sir, my question regards the true renaissance that’s happening with people with disabilities. They are an emerging population — millions of people with more potential in capacity, more mobile, more educated, more healthy, more empowered technology, but still trapped in very, very old social models that see them in terms of tragedy and charity and need and care. And the modern population of people with disabilities simply does not fit that model.
Amen! Boy, I wish I could have been with Karp when he said this. I doubt I could have been as articulate, polite, and on point if given an opportunity to ask the President a question. Karp is correct about people with a disability as being an emerging population that are trapped by antiquated notions about the meaning of disability. In the last two decades more people with a disability are able to access an equal education and schools are becoming better at dealing with students that have cognitive and physical disabilities. But one thing has not changed as rapidly: the unemployment rate among people with a disability is staggeringly high. To me, this is a clear sign that people with a disability encounter an overwhelming social bias when they try to enter the work force. Given the choice between a qualified person with and without a disability I suspect most employers will choose the person without a disability. This is a significant problem and as the economy has nose dived in the last year the people who have struggled the most include those with a disability. Thus, Karp asked the President how will his economic stimulus package "release the emerging potential that's currently wasted and untapped?"
How indeed will the economic stimulus package empower people with a disability? This is a story I would like to see the Wall Street Journal cover. People bemoan the high rate of unemployment but no national outcry or debate has taken place with regard to why people with a disability are unemployed in overwhelming numbers. Instead, people with a disability that assert their civil rights are considered to be "difficult" or have a "chip on their shoulder". In the case of the special olympics joke people with a disability are considered "humorless" and "politically incorrect" when they object to baseless stereotypes. How exactly are people with a disability supposed to succeed? The mainstream media is quick to exploit great visuals of a person with a disability doing something "remarkable" that reinforces the well worn idea of people "overcoming: their disability. Yet no stories emerge about the ordinary person with a disability that simply wants to have a job, career, family and community in which they are treated equally. The reasons why this is so difficult is worthy of sober study.
Friday, March 20, 2009
Obama and the Special Olympics: An Off-hand Remark?
Obama is the first sitting president to appear on the Tonight Show. As expected, Obama was articulate and funny. Obama's banter with host Jay Leno focused on the economy. Some of the questions asked were a bit more hard edged than I expected given the fact the Tonight Show is designed to entertain. I was impressed with Obama until Leno asked him about his bowling skills--apparently this was a running joke during the campaign. Obama stated he had recently bowled 129 and the audience laughed. Leno then joked "that's very good Mr. President". Obama's replied:
"It's like -- it was like Special Olympics, or something. (Laughter.)"
This comment was not funny nor was I amused. Two thought sprang to my mind: First, someone from the Obama administration would quickly put out a press release stating that he did not intend to demean or offend the Special Olympics and those that participate (this is exactly what the White House did). Second, was I a humorless person for thinking the President's joke was not funny? Afterall, the audience thought Obama's joke was very funny. A good nights sleep has not changed my mind. Obama's joke was not funny and highlights an inherent bias against all people with a disability in American society. This bias, a gross and largely unrecognized civil rights problem, is part of the American social structure. I know this because I encounter bigotry and ignorance daily. The fact that the average American does not wake up in the morning and think I am going to purposely discriminate against people with a disability is no excuse for civil rights violations that abound. The prejudice people with a disability encounter is different than the blatant civil rights violations women and people of color have experienced in the past and present. Disability prejudice takes many forms and at a deeply rooted symbolic level is not recognized as a civil rights violation. This is why the audience laughed at Obama's joke. People with a disability are inept physically and socially. Our complex and highly developed society is not designed to incorporate people with a disability. As my son has told me repeatedly "people without a disability rule the world".
If people with a disability were truly equal laws such as the ADA would not be needed. All people, those with and those without a disability, would demand inclusion and equality. Instead, access is granted to people with a disability because it is the law but such access is not valued. Inclusion is perceived to be a choice and a costly one at that--a dollar amount is tied to disability rights. Based on my experience people will acknowledge that inclusion is needed but are willing to do no more than that. Disability rights scholars call this ableism, an awkward word I try not to use because few people understand its meaning. Essentially, ableism is the belief that people with a disability are inherently different and inferior to all those deemed "normal". I am not normal because I use a wheelchair. My life thus has less value. People that participate in the special olympics are not normal because they have a cognitive disability. This is no laughing matter. Thus Obama's joke is not an "unfortunate remark" or an "off-hand comment". Obama's so called joke revealed just how ingrained disability prejudice is in our society.
Mainstream news outlets such as the New York Times, Los Angeles Times, and ABC News have mentioned Obama's comments about the special olympics in passing. Tabloids have also mentioned Obama's special olympic comment and used it to harpoon disability rights. For instance, Newsday, a local New York newspaper, published "Barack Obama, Jay Leno and the Special Olympic LIne". According to Newsday, "without fail Obama haters will spin this into something it's not... we won't delve deep into how this will divide the nation into partisan camps or how "pundits" will remark that while people are losing their jobs left and right, their president can mock handicapped kids on national television. (Again, we're fairly certain you'll hear something silly to that effect)". I don't think Obama's comment was silly nor am I an Obama hater. Instead, I am disheartened that Obama, the first nationally known politician with an understanding of disability rights, would make such a statement. The oppression disabled people experience in this country is no laughing matter. People who are the butt of a joke don't get a job--if you doubt me just ask one of the 70% of disabled people that are currently unemployed. People who are the butt of a joke don't get an education. People that are the butt of a joke have the funding for group homes reduced. People who are the butt of jokes are not integrated into our communities. People who are the butt of jokes end up in institutions. People that are the butt of jokes are just that--a joke, a human being denied their humanity.
"It's like -- it was like Special Olympics, or something. (Laughter.)"
This comment was not funny nor was I amused. Two thought sprang to my mind: First, someone from the Obama administration would quickly put out a press release stating that he did not intend to demean or offend the Special Olympics and those that participate (this is exactly what the White House did). Second, was I a humorless person for thinking the President's joke was not funny? Afterall, the audience thought Obama's joke was very funny. A good nights sleep has not changed my mind. Obama's joke was not funny and highlights an inherent bias against all people with a disability in American society. This bias, a gross and largely unrecognized civil rights problem, is part of the American social structure. I know this because I encounter bigotry and ignorance daily. The fact that the average American does not wake up in the morning and think I am going to purposely discriminate against people with a disability is no excuse for civil rights violations that abound. The prejudice people with a disability encounter is different than the blatant civil rights violations women and people of color have experienced in the past and present. Disability prejudice takes many forms and at a deeply rooted symbolic level is not recognized as a civil rights violation. This is why the audience laughed at Obama's joke. People with a disability are inept physically and socially. Our complex and highly developed society is not designed to incorporate people with a disability. As my son has told me repeatedly "people without a disability rule the world".
If people with a disability were truly equal laws such as the ADA would not be needed. All people, those with and those without a disability, would demand inclusion and equality. Instead, access is granted to people with a disability because it is the law but such access is not valued. Inclusion is perceived to be a choice and a costly one at that--a dollar amount is tied to disability rights. Based on my experience people will acknowledge that inclusion is needed but are willing to do no more than that. Disability rights scholars call this ableism, an awkward word I try not to use because few people understand its meaning. Essentially, ableism is the belief that people with a disability are inherently different and inferior to all those deemed "normal". I am not normal because I use a wheelchair. My life thus has less value. People that participate in the special olympics are not normal because they have a cognitive disability. This is no laughing matter. Thus Obama's joke is not an "unfortunate remark" or an "off-hand comment". Obama's so called joke revealed just how ingrained disability prejudice is in our society.
Mainstream news outlets such as the New York Times, Los Angeles Times, and ABC News have mentioned Obama's comments about the special olympics in passing. Tabloids have also mentioned Obama's special olympic comment and used it to harpoon disability rights. For instance, Newsday, a local New York newspaper, published "Barack Obama, Jay Leno and the Special Olympic LIne". According to Newsday, "without fail Obama haters will spin this into something it's not... we won't delve deep into how this will divide the nation into partisan camps or how "pundits" will remark that while people are losing their jobs left and right, their president can mock handicapped kids on national television. (Again, we're fairly certain you'll hear something silly to that effect)". I don't think Obama's comment was silly nor am I an Obama hater. Instead, I am disheartened that Obama, the first nationally known politician with an understanding of disability rights, would make such a statement. The oppression disabled people experience in this country is no laughing matter. People who are the butt of a joke don't get a job--if you doubt me just ask one of the 70% of disabled people that are currently unemployed. People who are the butt of a joke don't get an education. People that are the butt of a joke have the funding for group homes reduced. People who are the butt of jokes are not integrated into our communities. People who are the butt of jokes end up in institutions. People that are the butt of jokes are just that--a joke, a human being denied their humanity.
Wednesday, March 18, 2009
Sex: The Final Frontier
Sex is not a easy topic. When you factor disability into a discussion about sex it often leads to psychic overload. This psychic overload is particularly evident when one discusses sex and a person with a cognitive disability. This should not be a shock but people with disabilities enjoy sex. I enjoy sex. Heck, everyone I know enjoys sex. But paralyzed men and women and especially people with a cognitive disability such as Down's Syndrome are not supposed to even think about sex. We are simply thought not to be sexual beings. This is wrong, very wrong.
Sex and disability is in the news in England. Newspapers are abuzz about a soon to be broadcast television program: Cassidy's Real Britain on BBC3. The show chronicles the family life of Lucy Baxter, the adopted mother of three boys, all of whom have Down's Syndrome. One of her son's, Otto, 21 years old and an aspiring actor, wants to have a girl friend. Like every other young man and woman his age he wants to have sex too. He has been looking for a girl friend for three years. Lucy Baxter has tried to help her son Otto find a woman. What makes Baxter and her son Otto unusual is their openness and blunt statements. Otto has stated he is "on a mission to find a girlfriend. My reason is I want to have sex. I'm looking for girlfriends everywhere". Lucy Baxter is not shy about helping her son and has stated she would be willing to pay a prostitute to have sex with Otto. Is this shocking? Based on the comments posted by readers of the Daily Mail, BBC News, Telegraph and other news outlets the answer is a resounding yes. Lost in the furor are some astute observations by Lucy Baxter. Among the more thought provoking comments she has made are:
"Society has a learning disability when it comes to Down's Syndrome".
"Why shouldn't he enjoy the same experiences as other men?"
"I would have no problem paying for Otto to got to Amsterdam to visit a brothel if thats what he wanted".
"I have brought up Otto to relate to everybody so he has always been to mainstream schools and mixed with everybody".
"I believe that he has every right to have the same opportunities as everybody else".
"I can't see that one can be a rounded individual in our society if you don't participate in everything that we participate in".
"Unfortunately Otto is caught between two different worlds, two different cultures".
To me, Lucy Baxter sounds like a level headed woman that loves her son Otto and has a good grasp on the social implications of disability. Her statements are shocking for those unfamiliar with disability in large part because for generations people with a disability were institutionalized, sent to segregated schools, and locked away in their own families. Disability and shame went hand in hand. So called "normal" expectations and experiences such as sex were thought to be impossible for all people with a disability. Progress has been made because people with Down's Syndrome are no longer institutionalized and locked away at the urging of doctors and social workers. Social integration is far more common for people with cognitive and physical disabilities. Many parents must fight long and hard to integrate their children with disabilities into public schools in an effort to help them become as independent as humanly possible. However, needless obstacles are still the norm and Lucy Baxter's experience raising her three sons demonstrates this. The good news is that the laws are now on the side of people with a disability. For the first time in history people with a disability have civil rights. Thus a strong willed woman like Lucy Baxter can advocate and enhance not only the quality of her son's life but the life of other people with a disability. In short, schools can no longer legally isolate children with disabilities.
I consider the statements made by Lucy Baxter important in that they point to a profound flaw in terms of disability rights. What happens to children with a disability when they graduate from secondary and post secondary schools? What happens to a person like Otto Baxter when he expects to lead a routine life? While schools begrudgingly provide people with a disability an education the real problem arises when people with a disability try to enter the work force. The rate of unemployment among disabled people is appalling. In the United States the unemployment rate is about 70%. Without a job and the ability to live independently people with a disability have severely limited options. Given this, Lucy Baxter's comments about two different cultures is particularly insightful. For those without a disability, a job, love life, sex, and family are perfectly reasonable expectations. For people with a disability the same expectations are considered to be beyond their grasp. The reasons for this are obvious to me: bigotry. Society pays lip service to the inclusion of people with a disability. Sure we will build ramps and elevators for people that use a wheelchair, nursing homes for the elderly, and special schools for people with cognitive disabilities but we do that out of the goodness of our collective hearts. This thought process makes me furious. I have rights, civil rights, as does Lucy Baxter's son Otto. I lead an ordinary life and see no reason why Lucy Baxter's son Otto cannot lead an ordinary life. Part of the ordinary life includes sex. And to reiterate I like sex. I bet Otto Baxter will like sex too. I am sure all the readers of this blog that like sex too.
The problem as I perceive is straight forward: society does not perceive people with a disability as being complete human beings. Part of being a complete human being includes having sex. I know this is an issue because unlike my fellow males that can walk I am asked about sex by women before we ever make it to the bedroom. Shoot, strangers ask me about sex and every woman I have ever had sexual relations with has told me the first question they are asked when others realize they are dating a man with a disability is "Can he do it?" People with a disability can indeed "do it" and when we "do it" like it just as much as a person with out a disability. Thus Lucy Baxter's effort to empower her son to have sex is not lurid or inappropriate. Instead it simply highlights the fact her son has the same feelings and desires of every other human being.
Sex and disability is in the news in England. Newspapers are abuzz about a soon to be broadcast television program: Cassidy's Real Britain on BBC3. The show chronicles the family life of Lucy Baxter, the adopted mother of three boys, all of whom have Down's Syndrome. One of her son's, Otto, 21 years old and an aspiring actor, wants to have a girl friend. Like every other young man and woman his age he wants to have sex too. He has been looking for a girl friend for three years. Lucy Baxter has tried to help her son Otto find a woman. What makes Baxter and her son Otto unusual is their openness and blunt statements. Otto has stated he is "on a mission to find a girlfriend. My reason is I want to have sex. I'm looking for girlfriends everywhere". Lucy Baxter is not shy about helping her son and has stated she would be willing to pay a prostitute to have sex with Otto. Is this shocking? Based on the comments posted by readers of the Daily Mail, BBC News, Telegraph and other news outlets the answer is a resounding yes. Lost in the furor are some astute observations by Lucy Baxter. Among the more thought provoking comments she has made are:
"Society has a learning disability when it comes to Down's Syndrome".
"Why shouldn't he enjoy the same experiences as other men?"
"I would have no problem paying for Otto to got to Amsterdam to visit a brothel if thats what he wanted".
"I have brought up Otto to relate to everybody so he has always been to mainstream schools and mixed with everybody".
"I believe that he has every right to have the same opportunities as everybody else".
"I can't see that one can be a rounded individual in our society if you don't participate in everything that we participate in".
"Unfortunately Otto is caught between two different worlds, two different cultures".
To me, Lucy Baxter sounds like a level headed woman that loves her son Otto and has a good grasp on the social implications of disability. Her statements are shocking for those unfamiliar with disability in large part because for generations people with a disability were institutionalized, sent to segregated schools, and locked away in their own families. Disability and shame went hand in hand. So called "normal" expectations and experiences such as sex were thought to be impossible for all people with a disability. Progress has been made because people with Down's Syndrome are no longer institutionalized and locked away at the urging of doctors and social workers. Social integration is far more common for people with cognitive and physical disabilities. Many parents must fight long and hard to integrate their children with disabilities into public schools in an effort to help them become as independent as humanly possible. However, needless obstacles are still the norm and Lucy Baxter's experience raising her three sons demonstrates this. The good news is that the laws are now on the side of people with a disability. For the first time in history people with a disability have civil rights. Thus a strong willed woman like Lucy Baxter can advocate and enhance not only the quality of her son's life but the life of other people with a disability. In short, schools can no longer legally isolate children with disabilities.
I consider the statements made by Lucy Baxter important in that they point to a profound flaw in terms of disability rights. What happens to children with a disability when they graduate from secondary and post secondary schools? What happens to a person like Otto Baxter when he expects to lead a routine life? While schools begrudgingly provide people with a disability an education the real problem arises when people with a disability try to enter the work force. The rate of unemployment among disabled people is appalling. In the United States the unemployment rate is about 70%. Without a job and the ability to live independently people with a disability have severely limited options. Given this, Lucy Baxter's comments about two different cultures is particularly insightful. For those without a disability, a job, love life, sex, and family are perfectly reasonable expectations. For people with a disability the same expectations are considered to be beyond their grasp. The reasons for this are obvious to me: bigotry. Society pays lip service to the inclusion of people with a disability. Sure we will build ramps and elevators for people that use a wheelchair, nursing homes for the elderly, and special schools for people with cognitive disabilities but we do that out of the goodness of our collective hearts. This thought process makes me furious. I have rights, civil rights, as does Lucy Baxter's son Otto. I lead an ordinary life and see no reason why Lucy Baxter's son Otto cannot lead an ordinary life. Part of the ordinary life includes sex. And to reiterate I like sex. I bet Otto Baxter will like sex too. I am sure all the readers of this blog that like sex too.
The problem as I perceive is straight forward: society does not perceive people with a disability as being complete human beings. Part of being a complete human being includes having sex. I know this is an issue because unlike my fellow males that can walk I am asked about sex by women before we ever make it to the bedroom. Shoot, strangers ask me about sex and every woman I have ever had sexual relations with has told me the first question they are asked when others realize they are dating a man with a disability is "Can he do it?" People with a disability can indeed "do it" and when we "do it" like it just as much as a person with out a disability. Thus Lucy Baxter's effort to empower her son to have sex is not lurid or inappropriate. Instead it simply highlights the fact her son has the same feelings and desires of every other human being.
Tuesday, March 17, 2009
Ski Season Ends
Last week I was able to ski twice. I wanted to end the season on a high note and made arrangements to ski with New England Disabled Sports at Loon Mountain and Vermont Adaptive Ski and Sports at Pico Mountain. I was able to ski with my favorite instructors who are not only gifted teachers but fine human beings. Over the last few days I have thought about how the ski season went for me in terms of my development and the larger implications of adaptive skiing. I am happy to report I have found the correct rig for my use. I have enjoyed success using a bi ski this season. In January I was not an independent skier. Today, aside from getting on and off the lift, I can ski independently. Depending on the conditions, I can ski on beginner or intermediate terrain. I am proud of my progress and look forward to next year. I want to improve my skills and work on getting on and off the lift with my son and bother in law.
Over the last few days my son and I have talked about how much fun we have had on and off the slopes. In my son's estimation seeing me ski is cool and I have earned a measure of respect. This is not easy to accomplish given the fact my son is a teenager and has an answer for every problem known to man. As for me, I regret that I began skiing in my late 40s. I played wheelchair basketball in college but was never really serious about the game. Last night I was restless and took out a big file of articles about the history of adaptive sports. I read a few articles about the origins of adaptive skiing and feel better. When I was first paralyzed adaptive skiing was in its infancy. For those unfamiliar with adaptive skiing, the sport began in 1942 in Europe. Franz Wendel was the first disabled person to "crutch ski". During World War II Wendel had a leg amputated and by the end of the 1940s he was giving demonstrations about how amputees could ski with crutches--what are called riggers today. Word of Wendel's skiing spread to the United States and elsewhere and in the late 1950s an Austrian adaptive ski school was formed.
Adaptive skiing did not really come of age until the 1980s. In large part, the Vietnam War was responsible for creating a large population of disabled veterans that had much different post disability expectations. These men began a new era in adaptive skiing. People like Doug Pringle, president of Disabled Sports USA Far West, invented some of the earliest equipment. Pringle and other veterans trained a generation of adaptive skiers, many of whom are now teaching a second generation of people with disabilities. The 1980s witnessed the greatest growth and experimentation in adaptive skiing. Adaptive skis circa 1980, and sit skis in particular, were very primitive devices. In fact sit skis were little more than sleds and do not resemble the rigs seen today. Ski resorts were not interested in drawing adaptive skiers to the slopes. People with adaptive skis were often not permitted to use the lifts and were pulled up the mountain by ski instructors. Yet within a decade adaptive programs were being established all over the country. The largest program, Breckenridge Outdoor Education Center, is a good example. The downhill program began in 1981 and by 1985 it hosted the first National Handicap Ski Championship where the first modern mono ski was tested. The 1990s witness robust national and international development. Ski resorts began to host adaptive ski programs and chair lift protocols were established.
The above history has led me to conclude I did not miss out on too much adaptive skiing. I missed a fascinating era of experimentation and the establishment of sit skis in use today. Adaptive sit skiers such as myself now have two choices--they can use a mono ski, the Ferrari on the slopes or a bi ski (a small niche market exists for a dual ski). The rig I use, Enabling Technology's bi ski, does not possess a "cool" factor but is the rig that works best for me given my age and high level of paralysis. Reading about the history of adaptive skiing made me aware that I am able to ski because of the paralyzed people that came before me. These people were trail blazers that created an industry and helped form hundreds of non profit groups that currently teach people such as myself how to ski, kayak, and become active in a myriad of other sports. Thus I and every other current adaptive skier owes much to Franz Wendel and other innovators that did not focus on what they could not do but rather what was possible. In some ways not much has changed. Too often people still think of the things a disabled person cannot do and this reinforces why adaptive sports are so important. When a person is participating in adaptive sports strangers do not see a disability and instead see another human being participating in a sport thereby forming a common bind.
Over the last few days my son and I have talked about how much fun we have had on and off the slopes. In my son's estimation seeing me ski is cool and I have earned a measure of respect. This is not easy to accomplish given the fact my son is a teenager and has an answer for every problem known to man. As for me, I regret that I began skiing in my late 40s. I played wheelchair basketball in college but was never really serious about the game. Last night I was restless and took out a big file of articles about the history of adaptive sports. I read a few articles about the origins of adaptive skiing and feel better. When I was first paralyzed adaptive skiing was in its infancy. For those unfamiliar with adaptive skiing, the sport began in 1942 in Europe. Franz Wendel was the first disabled person to "crutch ski". During World War II Wendel had a leg amputated and by the end of the 1940s he was giving demonstrations about how amputees could ski with crutches--what are called riggers today. Word of Wendel's skiing spread to the United States and elsewhere and in the late 1950s an Austrian adaptive ski school was formed.
Adaptive skiing did not really come of age until the 1980s. In large part, the Vietnam War was responsible for creating a large population of disabled veterans that had much different post disability expectations. These men began a new era in adaptive skiing. People like Doug Pringle, president of Disabled Sports USA Far West, invented some of the earliest equipment. Pringle and other veterans trained a generation of adaptive skiers, many of whom are now teaching a second generation of people with disabilities. The 1980s witnessed the greatest growth and experimentation in adaptive skiing. Adaptive skis circa 1980, and sit skis in particular, were very primitive devices. In fact sit skis were little more than sleds and do not resemble the rigs seen today. Ski resorts were not interested in drawing adaptive skiers to the slopes. People with adaptive skis were often not permitted to use the lifts and were pulled up the mountain by ski instructors. Yet within a decade adaptive programs were being established all over the country. The largest program, Breckenridge Outdoor Education Center, is a good example. The downhill program began in 1981 and by 1985 it hosted the first National Handicap Ski Championship where the first modern mono ski was tested. The 1990s witness robust national and international development. Ski resorts began to host adaptive ski programs and chair lift protocols were established.
The above history has led me to conclude I did not miss out on too much adaptive skiing. I missed a fascinating era of experimentation and the establishment of sit skis in use today. Adaptive sit skiers such as myself now have two choices--they can use a mono ski, the Ferrari on the slopes or a bi ski (a small niche market exists for a dual ski). The rig I use, Enabling Technology's bi ski, does not possess a "cool" factor but is the rig that works best for me given my age and high level of paralysis. Reading about the history of adaptive skiing made me aware that I am able to ski because of the paralyzed people that came before me. These people were trail blazers that created an industry and helped form hundreds of non profit groups that currently teach people such as myself how to ski, kayak, and become active in a myriad of other sports. Thus I and every other current adaptive skier owes much to Franz Wendel and other innovators that did not focus on what they could not do but rather what was possible. In some ways not much has changed. Too often people still think of the things a disabled person cannot do and this reinforces why adaptive sports are so important. When a person is participating in adaptive sports strangers do not see a disability and instead see another human being participating in a sport thereby forming a common bind.
Monday, March 16, 2009
Obama Question
I just read via various sources that President Obama has created new position designed "to oversee arts and culture". The person that earned this position is Kareem Dale, a lawyer who was recently appointed special assistant to the President for disability policy. Dale's appointment as it relates to disability was logical and I am not sure if I am confused or worried by this change. Could it be that Dale is being set up by President Obama to be the "arts czar"? If so, he will focus on coordinating the activities of the National Endowment of the Humanities and the Institute of Museum and Library Services with regard to White House objectives. Again, I am not sure what this entails but it appears Dale's appointment is good news for the NEH, NEA, and IMLS because each of these agencies received a significant budget increase.
What I am confused about is what does Dale's appointment mean to disability policy? Will Dale's post in disability policy be assigned to someone else? Will Dale's work in disability policy be tagged onto his new position? If this is the case, can he advocate on behalf of people with disabilities and those in the arts? I do not think this is possible but it sure is common. I never cease to be amazed how disability policy or coordination is an afterthought. In my experience, such a position is an added element to an already over worked stressed out administrator. For instance, on many college campuses the person assigned to assist students with a disability primary job has nothing to do with disability. It is also not unusual for the person that is assigned to handle disability related matters to have absolutely no experience whatsoever with disability issues. The fact is disability policy and coordination requires an understanding of the law, the ADA in particular, disability rights, disability history, and a measure of understanding with regard to the social obstacles disabled students encounter. When done well, a disability policy specialist can empower students and faculty alike and educate the academic community about civil rights violations that still exist. Sadly, this is unusual as I have come across very few disability analysts that are well paid and can devote the time required to do a good job. The point, is will the Obama administration fall into this trap? Will Dale's position be filled by a person with a detailed knowledge of disability rights and policy? If so, this is a great sign. Maybe Obama does indeed value the inclusion of people with a disability and disability policy in his administration. I for one will be scouring the news for more about who may or may not replace Dale.
What I am confused about is what does Dale's appointment mean to disability policy? Will Dale's post in disability policy be assigned to someone else? Will Dale's work in disability policy be tagged onto his new position? If this is the case, can he advocate on behalf of people with disabilities and those in the arts? I do not think this is possible but it sure is common. I never cease to be amazed how disability policy or coordination is an afterthought. In my experience, such a position is an added element to an already over worked stressed out administrator. For instance, on many college campuses the person assigned to assist students with a disability primary job has nothing to do with disability. It is also not unusual for the person that is assigned to handle disability related matters to have absolutely no experience whatsoever with disability issues. The fact is disability policy and coordination requires an understanding of the law, the ADA in particular, disability rights, disability history, and a measure of understanding with regard to the social obstacles disabled students encounter. When done well, a disability policy specialist can empower students and faculty alike and educate the academic community about civil rights violations that still exist. Sadly, this is unusual as I have come across very few disability analysts that are well paid and can devote the time required to do a good job. The point, is will the Obama administration fall into this trap? Will Dale's position be filled by a person with a detailed knowledge of disability rights and policy? If so, this is a great sign. Maybe Obama does indeed value the inclusion of people with a disability and disability policy in his administration. I for one will be scouring the news for more about who may or may not replace Dale.
Tuesday, March 10, 2009
Idaho is a Dangerous Place to Live
I have posted about assisted suicide and its impact on the disability community. The link between disability and assisted suicide is a constant and ever present reminder that life with a disability is not valued. Of all the people I have met that have a disability those with cognitive issues are the most stigmatized. This is so wrong, so hurtful, so unnecessary that I am at a total loss as to how any caring human can tolerate such stigmatization. But stigma abounds for those with a cognitive deficit and I never cease to be appalled by the way people with cognitive disabilities are isolated from routine social interaction. One experience I had a few years ago highlighted this. I vividly recall going to a Hartford Wolfpack game in Hartford, CT. The Wolfpack are an American Hockey League Team affiliated with my beloved New York Rangers. I was at the game with my son and shortly after we arrived we saw a group of ten to fifteen cognitively disabled adults being escorted to their seats. This group of men and women were seated about ten to fifteen rows away from me. In spite of the fact the arena was crowded within a short period of time I was shocked to notice that this group was circled by rows of empty seats. This was the strangest seating configuration I had ever seen until it dawned on me that the people sitting next to the group people with a cognitively disability purposely left their seats. Why did people move from their seats? They did not want to sit next to a person with a cognitive disability. This bigoted behavior haunts me. I will never forget what took place. How can people be so closed minded? Would these people move if a black man sat next to them? Of course not, that would be bigotry. But these same people saw nothing wrong with moving when a person with a cognitive deficit sat next to them.
I thought of the above group of people with a cognitive disability when I read about an assisted suicide bill that passed in Idaho by a count of 34-0. The bill will allow medical treatment to be withheld from developmentally disabled people if their guardians or conservators consider continued medical care futile or inhumane. Read that last sentence very carefully. The Idaho bill, Senate Bill NO. 1114, would allow a guardian or conservator to withhold medical treatment. In essence, if a person with a "developmental disability" wants to live life support and life sustaining measures can be removed. And who gets to decide what "futile" and "inhumane" means? Doctors and ethics committees. This boggles my mind. Surely the men and women that wrote this law know a little bit of history. Did they ever hear of the T4 program in Nazi Germany? How about the Eugenics Movement in this country? What about Willowbrook Institution? Let me expand upon my reference to Willowbrook Institution. The deplorable conditions at Willowbrook Institution were gut wrenching and a national disgrace. Yet to me the worst part of the Willowbrook controversy was that doctors, social workers, school administrators, neighbors, priests, rabbis, and people too numerous to mention all convinced, forced, parents to institutionalize their children. Fast forward 30 years and the law makers in Idaho now want to give people in identical positions the power to decide whether a person with a developmental disability lives or dies? This thought kept me up last night and I shudder to think of the consequences this law can have on one group of needlessly stigmatized people.
I thought of the above group of people with a cognitive disability when I read about an assisted suicide bill that passed in Idaho by a count of 34-0. The bill will allow medical treatment to be withheld from developmentally disabled people if their guardians or conservators consider continued medical care futile or inhumane. Read that last sentence very carefully. The Idaho bill, Senate Bill NO. 1114, would allow a guardian or conservator to withhold medical treatment. In essence, if a person with a "developmental disability" wants to live life support and life sustaining measures can be removed. And who gets to decide what "futile" and "inhumane" means? Doctors and ethics committees. This boggles my mind. Surely the men and women that wrote this law know a little bit of history. Did they ever hear of the T4 program in Nazi Germany? How about the Eugenics Movement in this country? What about Willowbrook Institution? Let me expand upon my reference to Willowbrook Institution. The deplorable conditions at Willowbrook Institution were gut wrenching and a national disgrace. Yet to me the worst part of the Willowbrook controversy was that doctors, social workers, school administrators, neighbors, priests, rabbis, and people too numerous to mention all convinced, forced, parents to institutionalize their children. Fast forward 30 years and the law makers in Idaho now want to give people in identical positions the power to decide whether a person with a developmental disability lives or dies? This thought kept me up last night and I shudder to think of the consequences this law can have on one group of needlessly stigmatized people.
Monday, March 9, 2009
Choices for People with a Disability
Imagine that you are a 25 year old man: you are single, college educated, and have just started your career. You have an active dating life and hang out with friends on the weekend. You rent a small apartment and have a roommate. An only child, your parents are good hard working class people that made ends meet but have limited savings and some health care issues. Imagine this young man on a hot summer day. He is showing off for his buddies and a girl he is interested in by jumping headfirst into a river from a higher than usual spot. Beer abounds, hot dogs are cooking and all are laughing and having a good time. Yet this man does not pop up to the surface and friends think he is goofing around. A minute or two passes before it is obvious something is very wrong. Friends spring into action, drag him from the water to safety, and a cell phone is used to call EMS. The fun and games come to a jarring halt. Later that day the news is not good: this young man broke his neck and is a quadriplegic.
The young man I have conjured is far from unusual and could in fact be considered an archetype for millions of others his age. The scenario I have outlined is not unusual either. Is what took place a tragedy? In some ways yes. No one, myself included, wants to be paralyzed. Paralysis is a unique life altering experience but the real tragedy is not one's experience with paralysis. Modern medicine does a good job at putting the human body back together after paralysis (I speak from experience). The real tragedy takes place in the days, weeeks, months, and years after one is paralyzed. Our culture is hostile to the presence of people with a disability and does not value our presence. I have thought about this for thirty years and remain puzzled. Why is so much money and effort put into critical care for paralyzed people at the onset of injury and by comparison virtually nothing in support services?
Let me return to my archetypical paralyzed young man. As a quadriplegic he can do most things by himself but certainly not all. He needs help getting dressed and transferring from bed to wheelchair, wheelchair to car and wheelchair to toilet. He cannot lift himself off his butt and as a result is at a very high risk for a pressure sore. He will need an electric wheelchair, sliding board, and other durable medical goods. Once medically stable, he receives the prescribed amount of rehabilitation. Ready to renew his life is when the real trouble begins. The apartment where he lives is totally inaccessible. His parents home is not accessible and they are too infirm to help care for their son. His job involves some labor that he can no longer physically accomplish. His boss informs him he cannot return to work. With no where to go what happens? Thanks to federal and state laws this young man's only viable option is a nursing home. Federal medicaid law considers nursing home care an entitlement. In home care or community based services are an option but subject to available state funding. The state where the young man lives has a waiting list for in home services of over 20,000 names. Off to the nursing home he goes. Within weeks the young man is back in the hospital with a pressure sore. The nursing home did not check his skin until he had a significant sore because they were short staffed. Depressed, the young man lashes out at those around him. His friends and parents stop visiting because he is verbally abusive. The hospital does not want him as a patient nor does the nursing home. Miserable and isolated doctors prescribe medication to stabilize his depression and mood swings. The staff at the hospital and nursing home use his prescriptions to chemically restrain the young man.
The young man I have described is in a classic Catch-22 situation. The odds are within a decade the man will die of a complication related to his paralysis. His death will not be a medical failure but rather a social failure. Simply put, his life was not valued. Sending a man in his 20s to a nursing home is a measure of last resort and study after study has demonstrated that people with a disability fear a nursing home more than a hospital. Nursing homes however remain an entitlement while in home care or community based care is not. Medicaid, the program that provides medical care for the poor and disabled, is overwhelmingly biased in favor of institutional acre. This makes no sense and it is why groups such as ADAPT have embraced the Community Choice Act. I wrote about the CCA on my blog last year and I have learned Vermont, my favorite state, is leading the way in an effort to give people with disabilities the kind of in home or community based care they want. The real kicker here, pun intended, is that community care is not only what people want but a significant saving when compared to nursing home care. What Vermont has done is impressive and important. Its program, Choices for Care, essentially negated the nursing home bias and insured only those with the highest level of need end up in a nursing home.
The mission statement of the Vermont Department of Disabilities, Aging and Independent Living is to make the state the best place "in which to grow old or to live with a disability--with dignity, respect, and independence". The core principles of Choices for Care are lofty:
Person-Centered
The individual will be at the core of all plans and services.
Respect
Individuals, families, providers and staff are treated with respect.
Independence
The individual's personal and economic independence will be promoted.
Choice
Individuals will have options for services and supports.
Self-Determination
Individuals will direct their own lives.
Living Well
The individual's services and supports will promote health and well-being.
Contributing to the Community
Individuals are able to work, volunteer, and participate in local communities.
Flexibility
Individual needs will guide our actions.
Effective and Efficient
Individuals' needs will be met in a timely and cost effective way.
Collaboration
Individuals will benefit from our partnerships with families, communities, providers, and other federal, state and local organizations.
The Choices for Care program has been in existence since 2005 and for the last four years Vermonters with a disability can control the direction of their life. Although not intended to save money, Vermont now serves more people and spends less. This is great but the real key here is choice: people with a disability and the elderly can choose where and how they live. Community based care saves lives and the young man I conjured is a perfect example. What would his life had been like if he was able to live in low income housing and have someone come to his home twice a day to help him dress, shower, and use the toilet? I doubt he would become depressed and need to be chemically restrained. I bet he could have found work on line or within the community he lived. He would not become socially isolated since he had no reason to lash out in frustration. In short, he would lead an ordinary post paralysis life. Sadly, there is significant opposition to community based care in most states and within the federal government. The transition from a system reliant on institutional care versus one based on community based care is difficult but can be done. Vermont is but one example. Community based care makes sense but only if society values the existence of people with a disability.
The young man I have conjured is far from unusual and could in fact be considered an archetype for millions of others his age. The scenario I have outlined is not unusual either. Is what took place a tragedy? In some ways yes. No one, myself included, wants to be paralyzed. Paralysis is a unique life altering experience but the real tragedy is not one's experience with paralysis. Modern medicine does a good job at putting the human body back together after paralysis (I speak from experience). The real tragedy takes place in the days, weeeks, months, and years after one is paralyzed. Our culture is hostile to the presence of people with a disability and does not value our presence. I have thought about this for thirty years and remain puzzled. Why is so much money and effort put into critical care for paralyzed people at the onset of injury and by comparison virtually nothing in support services?
Let me return to my archetypical paralyzed young man. As a quadriplegic he can do most things by himself but certainly not all. He needs help getting dressed and transferring from bed to wheelchair, wheelchair to car and wheelchair to toilet. He cannot lift himself off his butt and as a result is at a very high risk for a pressure sore. He will need an electric wheelchair, sliding board, and other durable medical goods. Once medically stable, he receives the prescribed amount of rehabilitation. Ready to renew his life is when the real trouble begins. The apartment where he lives is totally inaccessible. His parents home is not accessible and they are too infirm to help care for their son. His job involves some labor that he can no longer physically accomplish. His boss informs him he cannot return to work. With no where to go what happens? Thanks to federal and state laws this young man's only viable option is a nursing home. Federal medicaid law considers nursing home care an entitlement. In home care or community based services are an option but subject to available state funding. The state where the young man lives has a waiting list for in home services of over 20,000 names. Off to the nursing home he goes. Within weeks the young man is back in the hospital with a pressure sore. The nursing home did not check his skin until he had a significant sore because they were short staffed. Depressed, the young man lashes out at those around him. His friends and parents stop visiting because he is verbally abusive. The hospital does not want him as a patient nor does the nursing home. Miserable and isolated doctors prescribe medication to stabilize his depression and mood swings. The staff at the hospital and nursing home use his prescriptions to chemically restrain the young man.
The young man I have described is in a classic Catch-22 situation. The odds are within a decade the man will die of a complication related to his paralysis. His death will not be a medical failure but rather a social failure. Simply put, his life was not valued. Sending a man in his 20s to a nursing home is a measure of last resort and study after study has demonstrated that people with a disability fear a nursing home more than a hospital. Nursing homes however remain an entitlement while in home care or community based care is not. Medicaid, the program that provides medical care for the poor and disabled, is overwhelmingly biased in favor of institutional acre. This makes no sense and it is why groups such as ADAPT have embraced the Community Choice Act. I wrote about the CCA on my blog last year and I have learned Vermont, my favorite state, is leading the way in an effort to give people with disabilities the kind of in home or community based care they want. The real kicker here, pun intended, is that community care is not only what people want but a significant saving when compared to nursing home care. What Vermont has done is impressive and important. Its program, Choices for Care, essentially negated the nursing home bias and insured only those with the highest level of need end up in a nursing home.
The mission statement of the Vermont Department of Disabilities, Aging and Independent Living is to make the state the best place "in which to grow old or to live with a disability--with dignity, respect, and independence". The core principles of Choices for Care are lofty:
Person-Centered
The individual will be at the core of all plans and services.
Respect
Individuals, families, providers and staff are treated with respect.
Independence
The individual's personal and economic independence will be promoted.
Choice
Individuals will have options for services and supports.
Self-Determination
Individuals will direct their own lives.
Living Well
The individual's services and supports will promote health and well-being.
Contributing to the Community
Individuals are able to work, volunteer, and participate in local communities.
Flexibility
Individual needs will guide our actions.
Effective and Efficient
Individuals' needs will be met in a timely and cost effective way.
Collaboration
Individuals will benefit from our partnerships with families, communities, providers, and other federal, state and local organizations.
The Choices for Care program has been in existence since 2005 and for the last four years Vermonters with a disability can control the direction of their life. Although not intended to save money, Vermont now serves more people and spends less. This is great but the real key here is choice: people with a disability and the elderly can choose where and how they live. Community based care saves lives and the young man I conjured is a perfect example. What would his life had been like if he was able to live in low income housing and have someone come to his home twice a day to help him dress, shower, and use the toilet? I doubt he would become depressed and need to be chemically restrained. I bet he could have found work on line or within the community he lived. He would not become socially isolated since he had no reason to lash out in frustration. In short, he would lead an ordinary post paralysis life. Sadly, there is significant opposition to community based care in most states and within the federal government. The transition from a system reliant on institutional care versus one based on community based care is difficult but can be done. Vermont is but one example. Community based care makes sense but only if society values the existence of people with a disability.
Tuesday, March 3, 2009
This is to be Expected
In Britain disability is news worthy and two stories are of particular interest. First, Tory leader David Cameron created a stir when he sent out Christmas cards. What made Cameron's archetypical Christmas card photograph of his family controversial was that it included his young song Ivan who has cerebral palsy. Some pundits suggested that Cameron used his son as a political prop designed to make him appear caring and sympathetic. The second story concerns Cerrie Burnell. Ms. Burnell is a presenter on the popular British children's TV show CBeebies. Ms. Burnell's mere presence has upset parents. Within days of her debut the BBC received complaints that Ms. Burnell was "scaring" children and one parent alleged his child had nightmares after seeing the show. What made Ms. Burnell's appearance so frightening? She has no right hand.
I had hoped that these two stories would spark a nuanced debate about disability in the British media. I reasoned that in 2008 the death of Daniel James and Barry Baker provided the foundation for a less hysterical and more substantive debate about disability. I was wrong. A glance at the website for CBeebies revealed a flood of comments, some of which were so nasty they had to be removed. I was stunned by the viscous nature of the comments made about Ms. Burnell. None of the many negative comments came from children but rather parents. To me this is proof that bigotry is learned behavior. The public debate about Ms. Burnell reveals what people with a disability already know: discrimination is an every day phenomenon. Thus when asked by the BBC if she were surprised by the complaints that were levied about her presence Ms. Burnell replied "This is to be expected". Sadly, Ms. Burnell is correct. Worse yet, her sober dignified reply to questions about her missing right hand have been ignored. Instead, there is hysteria, fear, and panic under the guise of "protecting children".
The criticism levied against Ms. Burnell is baseless. It is akin to the raw sort of discrimination that black people, women, and other minority groups encounter. In Ms. Burnell's estimation, discrimination against people with a disability remains common because there are so few disabled characters on television. This point is undoubtedly correct but the inherent prejudice people with a disability encounter runs deeper and is more insidious. In order for people with a disability to make substantive progress in terms of equal rights they need to assert themselves and embrace an identity that tied to their disability. In short , be "disabled and proud". Those unfamiliar with disability don't get this. It is a foreign concept too far removed from "common sense". No one wants to be disabled, right? Correct, no one wants to acquire or be born with a disability. But this does not mean one should hide a disability or be ashamed of it. Yet, this is exactly what we teach children when their disabled peers are sent to school on the "special bus", spend most of the day in "resource rooms" and have to go to the nursing office to use the bathroom because it has the only accessible toilet. The message being sent is clear and accepted without question: disability is very bad and society will, out of the goodness of our heart, provide a "special" place for you. In another era this was called segregation and the Supreme Court ruled it was inherently unequal.
People with a disability that demand equality know a different reality from their bipedal peers. Any disability is part of who we are as human beings. Ms. Burnell maintains that "I'm just like everyone else in that I wear what I feel comfortable in. I don't deliberately try to make people confront my disability, but I do not try to hide it. This is me, and I am neither ashamed nor embarrassed by it". Francesca Martinez, a comedian, considers this to be the "huge secret" about disability--"a disability is like hair colour, eye colour, height, or weight, just another arbitrary feature". Few people without a disability grasp this concept. In Ms. Burnell's case the fact she does not have a right hand is used to dehumanize her--this a a social not a physical failure on her part. What comes first is her disability and her humanity second. Thus people with a disability are public property, subject to intense scrutiny and rude or intrusive questions are the norm. These questions are designed to assert a socially superior position the questioner enjoys. Disability is not "normal" and such difference is supposed to be hidden. Every day more people with a disability are rejecting this idea. I for one see nothing wrong with my paralyzed and twisted body or Ms. Burnell'a lack of a right hand. Disability is simply part of life and society needs to become less discriminating and people with a disability need to assert their civil rights.
I had hoped that these two stories would spark a nuanced debate about disability in the British media. I reasoned that in 2008 the death of Daniel James and Barry Baker provided the foundation for a less hysterical and more substantive debate about disability. I was wrong. A glance at the website for CBeebies revealed a flood of comments, some of which were so nasty they had to be removed. I was stunned by the viscous nature of the comments made about Ms. Burnell. None of the many negative comments came from children but rather parents. To me this is proof that bigotry is learned behavior. The public debate about Ms. Burnell reveals what people with a disability already know: discrimination is an every day phenomenon. Thus when asked by the BBC if she were surprised by the complaints that were levied about her presence Ms. Burnell replied "This is to be expected". Sadly, Ms. Burnell is correct. Worse yet, her sober dignified reply to questions about her missing right hand have been ignored. Instead, there is hysteria, fear, and panic under the guise of "protecting children".
The criticism levied against Ms. Burnell is baseless. It is akin to the raw sort of discrimination that black people, women, and other minority groups encounter. In Ms. Burnell's estimation, discrimination against people with a disability remains common because there are so few disabled characters on television. This point is undoubtedly correct but the inherent prejudice people with a disability encounter runs deeper and is more insidious. In order for people with a disability to make substantive progress in terms of equal rights they need to assert themselves and embrace an identity that tied to their disability. In short , be "disabled and proud". Those unfamiliar with disability don't get this. It is a foreign concept too far removed from "common sense". No one wants to be disabled, right? Correct, no one wants to acquire or be born with a disability. But this does not mean one should hide a disability or be ashamed of it. Yet, this is exactly what we teach children when their disabled peers are sent to school on the "special bus", spend most of the day in "resource rooms" and have to go to the nursing office to use the bathroom because it has the only accessible toilet. The message being sent is clear and accepted without question: disability is very bad and society will, out of the goodness of our heart, provide a "special" place for you. In another era this was called segregation and the Supreme Court ruled it was inherently unequal.
People with a disability that demand equality know a different reality from their bipedal peers. Any disability is part of who we are as human beings. Ms. Burnell maintains that "I'm just like everyone else in that I wear what I feel comfortable in. I don't deliberately try to make people confront my disability, but I do not try to hide it. This is me, and I am neither ashamed nor embarrassed by it". Francesca Martinez, a comedian, considers this to be the "huge secret" about disability--"a disability is like hair colour, eye colour, height, or weight, just another arbitrary feature". Few people without a disability grasp this concept. In Ms. Burnell's case the fact she does not have a right hand is used to dehumanize her--this a a social not a physical failure on her part. What comes first is her disability and her humanity second. Thus people with a disability are public property, subject to intense scrutiny and rude or intrusive questions are the norm. These questions are designed to assert a socially superior position the questioner enjoys. Disability is not "normal" and such difference is supposed to be hidden. Every day more people with a disability are rejecting this idea. I for one see nothing wrong with my paralyzed and twisted body or Ms. Burnell'a lack of a right hand. Disability is simply part of life and society needs to become less discriminating and people with a disability need to assert their civil rights.
Subscribe to:
Posts (Atom)
