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.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
Thursday, July 10, 2008
Wednesday, July 9, 2008
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.
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.