The Washington Post is Oblivious

I just finished reading an article in the Washington Post, "Another Obstacle Conquered" published on July 8 by Carol D. Leonnig. This story fits into the classic media model of lets all feel good about how we are helping the handicapped. What obstacle was "conquered"? The House Speaker's Rostrum will be wheelchair accessible. Wow, this makes me feel so much better. And, gee whiz, I am so lucky to be an American and have a law, the ADA, protect my civil rights. Too bad that reality as I know it is radically different from the myth portrayed in the Washington Post story.

I hate to spoil the image of freedom and equality for all but that is simply not reality for millions of disabled people. While there is no doubt major strides have been made since the ADA was passed in 1990, the gulf between disabled people and those that walk on two feet is as immense. The divide is less architectural than it is cultural. Thus when I read that the House Speaker's Rostrum was going to be accessible my thoughts were as follows: No person using a wheelchair has ever led a session of the House. One quadriplegic, Jim Langevin, has served in the House. These thoughts in turn led me to ask why was the House Speaker's Rostrum not made accessible in 1990 when the ADA was passed? Maybe I am missing something but I was under the impression the ADA was made all Americans equal, those that walk and those that cannot.

The message being sent by the House is a tad bit late. Given this, I sadly must agree with Nancy Pelosi who is quoted as saying "Our commitment to a barrier free work place sends an invaluable message to all Americans that the House will lead by example". The example the House has sent to America is not a good one. As I see it the message sent is that the House has ignored the ADA for 18 years. Instead of being embarrassed the House Rostrum remained inaccessible for almost two decades Pelosi and others are slapping themselves on the back for doing a great job. The fact is the Capital and many other symbolically significant parts of Washington remain inaccessible. The excuse often cited for the lack of access is that the law provided a great deal of flexibility in deciding which accommodations can "reasonably" be made accessible for people with disabilities. I for one think the fact the House Rostrum was not made accessible long ago is a far cry from "reasonable". If there were a social demand for access the House Rostrum would have been made accessible years ago. The House Rostrum is accordingly important symbolically and most have failed to comprehend the meaning--it is okay to delay wheelchair access as long as humanly possible because this is accomplished out of the goodness of our heart. This logic conveniently ignores the law and the consequence is that socially wheelchair access is perceived as a mater of choice.

If you think my views are too strident or simply wrong, try using a wheelchair for a few days. Try to go about your life without using stairs and rely totally on elevators, lifts and ramps. What you will find is a shock. What the ADA states as law and what is reality are radically different. Try renting a car with hand controls and you will rarely if ever get your car at the prescribed time or day. Try getting on and off an airplane and you will learn delays of over an hour are the norm, that is an hour after every passenger has already left the plane. Try to go shopping and you will find every accessible changing room is locked and no one knows where the key is. Try and go to the bathroom in a restaurant and you will find it is simply not possible as they are all inaccessible. Try to buy a ticket to any major sporting event on line and you will find that you cannot purchase handicap seats because you must call a "special" telephone number. Good luck waiting to have someone answer. Try to get on a bus and have the driver tell you the wheelchair lift is broken--every day. Try to take a long walk and find curb cuts are routinely blocked by parked cars or simply do not exist. Try entering a classroom but discover you cannot because there is no place sit because the chairs are all bolted to the floor. This is what disabled people such as myself encounter every day. This is exactly why the ADA has been a failure in many ways and why advocates for disability rights have helped to pass an ADA Restoration Act. None of the above seems "reasonable", indeed it reminds me of the Jim Crow Era that black people railed against. This leads me to conclude that the only real way to make society value access is to force it down other's throats by means of civil disobedience. A careful study of the disability rights movement reveals this is incredibly successful. Too bad the media never points out these facts.

Christopher Reeve in the News

Several years ago I published an extremely critical article about Christopher Reeve in the Ragged Edge. Although the Ragged Edge is no longer being published, it remains in my mind one of the most important disability rights periodicals ever produced. For many years after Reeve was paralyzed I refused to criticize him because I assumed he would eventually learn and understand what disability rights were all about. Many newly paralyzed people vow to walk again and most eventually realize that life after spinal cord injury is every bit as rewarding and fulfilling as life was before an injury. Most paralyzed people also come to realize that the major problems they encounter are not medical complications caused by paralysis. Rather the real problem that prevents paralyzed people from being incorporated into society is social, more specifically it is very difficult to "overcome" or avoid the social stigma and isolation associated with using a wheelchair. Reeve never learned this and the longer he remained paralyzed the more obnoxious he became about his quest for a cure. In his quest for a cure, an honorable goal by itself, he reinforced every negative stereotype about disability and set back disability rights for at least a decade. When he was alive I cringed every time I heard him speak and found his willingness to let the media portray him as a tragic figure, a mere shadow of his virile Superman persona, nothing short of despicable.

Reeve is back in the news again thanks to the release of a new unauthorized biography with the dreadful title Somewhere in Heaven by Christopher Andersen. Mr. Andersen is out and about hawking his book and clearly projecting the most simplistic view of disability. Reeve's paralysis was a tragedy, his life hopelessly compromised and elevates his wife, Dana, for sainthood. In interviews Andersen is happy to portray Reeve as a real life super hero. The subtext however is the knowledge that all those unfamiliar with disability consider Reeve's life after he was injured to be pitiful. Anderson and the mainstream press rely a hopelessly out of date perception of disability that Reeve embraced. Thus the focus is on Reeve's supposed "inner strength" and his wife Dana's "remarkable" dedication to her husband. Utterly lost in this feel good portrait is the gross social, economic, and political inequities disabled people encounter every day. Ignored are more than two decades of disability rights legislation that the Supreme Court has tried to overturn given half a chance. No where do I hear about the person with a similar injury to Reeve who within weeks is sent to a nursing from where they are highly unlikely to ever leave. I do not hear about an unemployment rate of 70% among those with a severe disability. Where are the reports about the ADA Restoration Act? Does the average citizen even know the ADA is civil rights legislation?

The focus on Reeve as an archetype for disability often makes me break out in a series of curse words that would make a sailor blush. Reeve was indeed a tragic figure but not for the reasons most people think. I think he surrounded himself with all the wrong people and that his ego did not let him understand that one can be disabled and proud. His singular focus on cure while admirable allowed him to view himself as some how different from every other disabled person. To me, this is the real tragedy in Reeve's post injury life. He could have advocated for cure and been embraced by disability rights activists bent on social change for all people. Instead Reeve accepted and incorporated an overwhelming negative view of disability and thoughtlessly used the ramps and elevators that disability activists fought so hard for. I think Reeve missed an opportunity to radically change the cultural perception of disabled people in this country and that this missed opportunity was particularly unfortunate. This point is reinforced every time I listen to or read about Reeve's life as those unfamiliar with disability spout off about how heroic he and his wife were. The effort to portray him as a heroic figure reveals nothing about Reeve and much about the bigotry and ignorance paralyzed people encounter every time they leave their house. This is the story I want people to think about.

Jerry Lewis and the Congressional Gold Medal

In the last 24 hours I have gotten a slew of email from people outraged that Jerry Lewis is being considered for the Congressional Gold Medal "in recognition of his outstanding service to the nation." The bill HR3035 was introduced in the House of Representatives on July 12, 2007. The bill is supported by politicians I refuse to name from New Jersey where Mr. Lewis was born and Nevada where he resides. The effort to award Mr. Lewis the Congressional Gold Medal prominently mentions his efforts to raise money for the Muscular Dystrophy Association. Congress is correct, Mr. Lewis raised millions of dollars for the MDA. What is conveniently overlooked is the antiquated way in which he raised money via the MDS telethon. Mr. Lewis may have raised millions of dollars but disabled people consider him memorable for other reasons--specifically his obnoxious and bigoted remarks when disabled people began to complain about his fund raising methods that focused on pity. I remember being stunned when I heard him angrily state "Pity? If you don't want to be pitied because you're a cripple in a wheelchair stay in your house". This remark and many other similarly offensive comments helped galvanize disabled people to form Jerry's Orphans" who effectively protested and changed the way the MDA raised money. While Mr. Lewis was not forced out of the MDA and the organization continued to broadcast its telethon, a point was made by Jerry Orphans that had national implications. Disability and disabled people were not and should not be objects of pity. This represented a small but significant step forward in disability rights.

Frankly, I do not care if Jerry Lewis is awarded the Congressional Gold Medal. Mr. Lewis' fame and fortune are a thing of the past. The college students I teach have no idea who Mr. Lewis is and many do not even know what a telethon is. To me, this lack of knowledge represents significant social progress. The pity once heaped upon disabled people is growing increasingly uncommon and many young people simply do not make the connection between pity and disability. While there is a long way to go toward true social, economic, and political equality for disabled people, this week I am hopeful about the future. One small and seemingly insignificant social exchange caused me to stop and think. I was on my way to the brand new library after class. The new building is finally complete and I was checking up on the required reading I had on reserve. As I went up the ramp to the only entrance two of my students appeared behind me as I opened the door. As I was going in one student asked me "Professor, how can a school build a new library without an electric door opener?" Before I could reply the other student remarked "Wow, this is really bad. You know the electric door is a must. What were the architects thinking? Did they take a stupid pill?"

The two students I was with instantly recognized the absence of electric doors as wrong and were surprised. I told them the lack of wheelchair access is a never ending problem even in new buildings like the library. They did not seem to understand what I was saying until I told them them all state universities had tight budgets and it was easy to cut out high priced items like electric doors. The veritable light bulb went off above their heads and they proceeded to tell me about all the short cuts that had been undertaken in the dorms and other building on campus I did not routinely go to in terms of wheelchair access. As our conversation tailed off it was clear they considered the lack of wheelchair access on campus was simply wrong--a wrong they had not noticed. The lack of awareness was not unusual but what I found encouraging was the assumption that they expected all buildings to be accessible. Too bad those that designed the new library do not think the same way. In my dreams one of the students I spoke with will become an architect, one that will design buildings that are accessible on paper and in reality.

Airline Discrimination

Complaints about airlines have reached an all time high for good reason. Ticket prices are soaring, planes are packed and often dirty, service is terrible, and flights are delayed or cancelled at the last minute. Airline personnel are subjected to a great deal of stress and face the wraith of angry travelers. In short, flying anywhere is now a routinely miserable experience. This is hardly a news worthy observation. Horror stories abound and once in a while a particularly terrible story emerges. This week's horror story concerns a mother and her autistic child. The mother and child were thrown off a Raleigh-Durham out bound American Airlines flight. According to various news agencies a 2 1/2 year old autistic child had a "raging fit" prior to take off. The mother does not deny that her child had a major melt down. The mother and airline disagree over why the child had a fit. According to the mother, Janice Farrell, the flight crew made a bad situation much worse. The flight crew apparently kept fussing with the child's seat belt and ignored the mother's pleas about how to handle her son. The mother also claims one pilot further aggravated a bad situation by issuing her a stern warning that pushed her son over the edge. This led the pilots to return the plane to the terminal and announce to all passengers they were doing this because a mother had an "uncontrollable child" on board.

The above story is far from unique. It follows on the heals of other stories such as the autistic boy who was banned from attending his church or another autistic child that was voted out of his kindergartner class. These stories have made me realize two things: first, the prevalence of autism is increasing and society is ill prepared to deal with these children. Second, airlines are aggressively discriminatory to disabled people in general and all people that do not "fit in"--those that do not do what they are told, when they are told and how they are told.

I do not know much about autism. However, when skiing in Vermont with Vermont Adaptive the last two winters I have been able to observe and interact with children that have autism. Based on my limited experience, the autism spectrum is remarkably diverse and the problems associated with these children speak volumes about society's inability to accept those who are different. This is exactly what airlines detest--difference of any sort. Why one is different is not relevant as the airlines fiercely protect their total control over who is permitted to enter their planes. If airline personnel deem a person a "threat" or think they may compromise the safety of a flight they will without hesitation remove this person from a plane. Historically, airlines have used flight safety to harass and ban disabled people from flying. In recent years airlines have become increasingly aggressive in preventing people they deem objectionable from boarding. One's difference is not relevant--anyone out of the ordinary is subject to intense scrutiny and blatant discrimination. Given this, the experience of the autistic child and mother symbolizes a much larger social problem--specifically American's increasing lack of tolerance. Difference and dissent of any sort is deemed not only objectionable but somehow Un-American. All those that are either physically different or hold contrary views are stigmatized. This is a form of social oppression that has spread and been cultivated by George Bush since was elected. Simplistic views that boil down to to the belief that "you are either an ally of America or an enemy" appeal to our basest instincts and have filtered throughout our society. No institution or individual is immune--not even a mother and her autistic child. Depressing thoughts for a beautiful June morning.

30 Days in a Wheelchair

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I have posted a few clips from You Tube and I hope I have properly attached the episode 30 Days in a Wheelchair from the FX program directed by Morgan Spurlock. As many know, Spurlock is the director of Super Size Me, an outstanding documentary about the fast food chain McDondalds. If you have not seen this film, you are truly missing out on a devastating critique of the food sold at McDonalds.

The episode, 30 Days in a Wheelchair, from the FX TV channel series left me with decidedly mixed feelings. Overall, I thought Spurlock did an outstanding job depicting the social and economic reality reality many people with spinal cord injury encounter. The sense of culture shock for newly paralyzed people comes across with the force of a blunt punch to the nose. It prompted me to recall how outraged I was when I first experienced gross social injustice. But what bothered me about the entire episode was the unrelenting focus on what paralyzed people cannot do. Each and every scene highlighted the obstacles paralyzed people encounter. Yes, each and every problem has a solution but why such a negative focus. This critique is flawed I suspect in that I am all too familiar with the social consequences of paralysis. Perhaps the general public totally unfamiliar with life for those that use a wheelchair will be enlightened. I suspect this is Spurlock's audience and hope that the proverbial light bulb will be lit and people will learn the major obstacles paralyzed people encounter are social. This is the real message of the episode, one I hope that comes across loud and clear. In the end though I am not convinced this is the message people will get. Will those unwilling to open their mind simply think "Thank God I am not paralyzed like the poor bastards on that show". This is why I have reservations about the episode and its focus on what paralyzed people cannot do rather than what can be done and achieved, a critique I am not sure is on target. I am curious as to what others think of the show.

Bush a Proponent of Disability Rights?

I was reading the Sunday New York Times with my usual cup of coffee and waiting for my son to wake up when I almost gagged to death. My fit began a few paragraphs into an article by Robert Pear, "Plan Seeks More Access for Disabled". Apparently the Bush administration is about to propose "far reaching" new rules that would create greater access for disabled people. This comes after a five month review that is scheduled to be published by the Federal Register. The public is encouraged to comment. Golly, isn't the Bush administration great! Let's help out those poor disabled people! But wait--the proposal is "stirring concern". The US Chamber of Commerce hates the idea as do small businesses. They claim ADA law suits are already an onerous burden. In response the Bush administration has proposed "safe harbors" for small business. I guess local businesses need to be protected from the hordes of roving disabled people hell bent on suing them.

Stories such as the one I read in the NY Times never cease to amaze me. I do not understand how any reporter could write "the proposed rules flesh out the meaning of the 1990 law, which set forth broad objectives". Within a few strokes of the key board any reporter or researcher could learn that the ADA has been gutted by the Supreme Court. In decision after decision the Supreme Court has increasingly narrowed the definition of disability and eliminated as many people as possible from the ranks of the disabled. What modern medicine could not do the Supreme Court has done--cure the disabled.

I am not opposed to the new rules and am a proponent of the ADA Restoration. To me this highlights a huge problem, one that has been present since the ADA was passed 18 years ago. The ADA, inherently flawed in my opinion, is not valued. That is, there is no social support for the inclusion of disabled people. Yes, we Americans love the idea of inclusion but when it actually comes to hiring an interpreter for a Deaf person, providing a braille menu for someone who is blind or building a ramp for a person such as myself that uses a wheelchair we hit a brick wall. These things cost money and businesses and even our own state and federal government balk at the expense. Sure, I have been told, we want to be inclusive but this is expensive and the codes complicated. The result is nothing is done--access is still perceived to be an individual problem for those angry selfish disable people. And what do these angry disabled people do? They do what every other American does--sue the bastards! This in turn leads the Chamber of Commerce to spread fear via comments such as this: "the proposed rules are so long and technically complex that even the best-intentioned small business could be found out of compliance by a clever lawyer looking to force a settlement". More obnoxious commentators refer to the ADA as "legalized racketeering".

The fact is society does not care if the world to be accessible. All businesses complain about the ADA, secondary schools refuse to provide lifts on buses, airlines routinely harass disabled passengers, and universities complain bitterly about "flawed students", those with learning disabilities that expect more time to complete tests. No law can truly make a difference until there is the social demand for inclusion. The law suites filed under the ADA are just the tip of a social ice berg--they address the practical problem of access but not the root cause. Thus expensive and time consuming law suits will not cease any time soon because they are the only reasonably effective way to force society to be more accessible. Simply put, law suits are effective as is civil disobedience. If people want these law suits to disappear it is within their power and requires a fundamental shift in thought. Welcome disabled people. That's right, welcome disabled people, support their civil rights as you would defend your own. Ask for a braille menu. Complain when the bathroom door is so narrow a wheelchair user could not possibly use it. Ask why the elevator is broken. Question why an interpreter for the Deaf is not provided at a lecture. Demand a wheelchair lift be added to most buses. When flying do not complain about the folding wheelchair that prevents you from storing your suit case. When all these things happen the world will really change and we may not even need the ADA. Ah, visions of equality dance in my head on a gloomy Monday morning.

Sam Sullivan, Mayor

Few Americans know who same Sam Sullivan is. Perhaps those with a keen interest in the Olympics will recall the closing moments of the 2006 Winter games in Turin, Italy. As tradition dictates, Sullivan, the Mayor of Vancouver, was selected to hold the Olympic flag. While this ceremony is well worn, the fact Sullivan was a quadriplegic was outside the norm. There simply are not many quadriplegic Mayors in Canada, Europe, or the United States. Holding the Olympic flag is a powerful symbol and for a brief moment Sullivan was the most famous mayor in the world.

Fast forward to 2008. Sullivan has fallen out of grace with the citizens of Vancouver and his political party. He just lost the nomination vote within his own party, the Non-Partisan Association. What makes Sullivan so interesting is that he was the first disabled mayor of a major Canadian city. He is also one of the first politicians to not win a nomination without a some sort of lurid scandal leading to his downfall. I am not well versed in Vancouver politics and my knowledge of Sullivan is limited to the You Tube documentary and a few articles I have read since he was elected. Like most politicians, Sullivan is skilled at providing sound bites--my favorite is contained on the Your Tube clip-"I like the fact people under estimate me, they pat me on the head and then I rip their throats out".

What I have found particularly interesting in the last few days is the news accounts of Sullivan's rapid political rise and fall. Reports can be found in most Canadian news outlets such as the Globe & Mail, Star, Vancouver Sun, and Canada.com. Far too many accounts refer to Sullivan as "wheelchair bound" while others refer to him as the "accidental mayor", a moniker he does not dispute. What did Sullivan do so wrong? Here are some reasons that have been mentioned:

He was not cut out for the job in the first place.
He had trouble figuring out what to do.
He does not inspire.
He made everything out to be about his disability.
He was too self absorbed and worried about his image.

The nastiest comments have largely been left unsaid. There is no doubt in my mind that Sullivan's disability figures prominently in his down fall. According to one of his advisors who was quoted in the Globe & Mail: "the hatred for Sam is amazing. I've talked to lots of people about why and no one can put a finger on it. It's not his handling of a specific issue or issues, it's more ephemeral than that. They just don't like him--period".

Why do people dislike Sullivan? According to Gary Mason of the Globe & Mail, Sullivan had many detractors, none of whom could articulate their intense dislike for the man. This leads Mason to write that Sullivan was elected principally because his personal story was so inspiring, that it was a narrative that the world could not resist. This so called "narrative" is all too familiar to disabled people--the Horatio Alger formula of rags to riches in literature or the super cripple image of a person "overcoming" their disability. The only person willing to voice their opinion on this matter is Bob Rennie, an important real estate figure in Vancouver. Rennie, an outspoken critic of Sullivan, has sated that he "thinks his wheelchair got him there [the mayor's office] But it wasn't enough to keep him there". I detest this comment but respect that he had the nerve to voice what others likely think. This highlights a big problem: no one considers Rennie's comment to be bigoted. Thus I suggest readers substitute the word wheelchair with the word black. What would the reaction of the media have been? Outrage for sure. Sadly, this indicates to me it is still socially acceptable to be prejudiced against disabled people. People do not state this explicitly nor do they wake up in the morning and think they are bigots. But just because it is not thought about or uttered does not mean bigotry does not exist. I assure bigotry is alive and well. I experience it on a daily basis at work and in public. The bigotry I encounter is both voiced and unvoiced. It also hurts and leads me to ceaselessly wonder why people without disabilities are so quick to judge others with a disability. This has always infuriated and puzzled me. I have and will continue to rail against being judged as a human based upon the fact I use a wheelchair. To me, my wheelchair is simply a means of locomotion, one that is both more and less efficient than walking. Yet society seems utterly incapable of seeing past my wheelchair. Instead most people conjure up grossly out dated and worn out stereotypes about disabled people. I hope these stereotypes will be shattered and stories such as the one's I read about Sullivan become a thing of the past. Sadly, I think this is in the very distant future.