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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.

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.

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.

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.