In the last week Christina Symanski, a woman I have never met has not been far from my mind. Frankly, her death has me spooked. She lived well within driving distance of my home. She shared the same civil rights that I enjoy and yet she did not believe her life had any value. She was convinced her quality of life was abysmally low and that it was not going to ever improve. She thus chose to die. I understand what drove her to die as my struggle to live an independent life was very much in question last year. I was for many months utterly dependent upon my family and friends. This dependency left me despondent. A few things saved me from sinking into the depths of despair and depression like Symanski. Even in my darkest moments I knew powerful social factors were in play. I knew these social factors led many quadriplegics such as Symanski to believe their lives lacked meaning and value. They did not want to be a burden on family or friends. They mourned lost friendships and lovers. They had no job or prospects for employment. They feared life in a nursing home. They received substandard health care due to blatant discrimination. They were confronted with economic ruin. They were socially isolated unable to leave their homes. This is a grim reality that leads to an untold number of deaths.
When I cannot get a story like Symanski’s out of my mind I think of other people with a disability that endure. By endure I do not mean endure physical deficits but rather endure a society that would lead us to believe we are better off dead. Society embraces the dignity and autonomy of those people with a disability that want to die. These people have character! These people are brave! These people are applauded! This is an old story, a deeply ingrained stereotype that is not questioned. We truly admire people with a disability that want to die and shake our collective heads in confusion by those that want to live. This mentality plays itself out in popular culture. Hollywood produces films such as Million Dollar Baby that receive accolades. I was stunned not by the film but the audience reaction. When I saw it in the theaters the audience cheered when the main character Maggie was killed. A comparable film, the Sea Inside, was released in Spain. The courts are not free from anti disability bias. Jack Kevorkian eluded being convicted even though he killed people who were disabled and not terminally ill. In 1990 a Georgia court ruled that Larry MacAfee, a quadriplegic who was not terminally ill had the right to disconnect himself from his respirator and die. The court declared MacAfee’s desire to die outweighed the states interest in preservation of life and in preventing suicide thereby upholding his right to assistance in dying. Just the year before another man, David Rivlin, also sought court intervention in his wish to die. Unlike MacAfee who did indeed die, Rivlin changed his mind. In 2010 Dan Crews expressed his desire to die. He feared life in a nursing home and wanted to be disconnected from his resperator. I could site many other examples but the common theme remains the same—people with a disability that publicly express a desire to die rather than live become media darlings. They get complete and total support in their quest.
The stories above infuriate me. Why is it we rally around those people with a disability that want to die and yet refuse to provide the necessary social supports that would empower people with a disability to live rich, full and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly patient centered, buzz words I often heard last year. It makes me wonder though does “patient centered” allow, justify and encourage people, paralyzed people, to die? It is a euphemism that makes people in the health care system feel better? Symanski died because she found living with a disability intolerable. The unspoken corollary is she was driven to die because social supports were woefully inadequate and medical care substandard.
I remain stunned and saddened but hardly surprised by Symanski’s death. The social vortex Symanski was sucked into that led to her death has claimed the lives of many people with disabilities. Paul Longmore, a brilliant scholar and disability rights activist, wrote about what saved his life: “One thing saved me from that fate: the disability-rights movement. Our movement won my right to live independently, to work productively, to gain access to public places, to receive reasonable accommodations, and to obtain protection from discrimination. Our movement gave me the gift of a nurturing community. It offered me a positive, disability-affirming identity. It taught me pride.” How I wish Symanski could have met Paul Lngmore and others involved in the disability rights movement.
Monday, December 12, 2011
Life Paralyzed: A Final Post
On Sunday December 11 a final post was put up on Life: Paralyzed by Christina Symanski. Entitled "Message to My Friends", Symanski gives those that knew her a final good bye. I urge everyone to read it. One passage struck me as particularly sad.
"Please know that my decision to leave this life behind was not made rashly, or without careful consideration and concern for the people I'm leaving behind. I have been fighting an uphill battle to live, every day since my accident. A big part of me died back on June 5, 2005 and my life was never the same. Everything has felt empty, and bittersweet. Every memory tainted with sadness, over everything that I've lost, everything I miss doing, and everything I had planned to do, and hoped to be.
My paralysis robbed me of the most basic human necessities (freedom, privacy, independence, and physical intimacy)."
I wish Symanski had learned to cope with paralysis. I do not necessarily mean cope with the very real physical struggles she faced but rather make a theoretical leap in logic. Comparing life with and without paralysis is inherently negative and misleading. There is life with paralysis and there is life without paralysis. You cannot compare the two--they are fundamentally different social experiences. Paralysis I would maintain robs a person of only one thing--equality. The civil rights of people with a disability are not valued and often violated. In fact, disability rights and civil rights are not considered by many to be comparable. I wish Symanski embraced her inalienable rights, rights that many people take for granted. Her death is a tragedy for her family and friends and an indictment on American society's failure to provide sub basic social supports for people with a disability.
"Please know that my decision to leave this life behind was not made rashly, or without careful consideration and concern for the people I'm leaving behind. I have been fighting an uphill battle to live, every day since my accident. A big part of me died back on June 5, 2005 and my life was never the same. Everything has felt empty, and bittersweet. Every memory tainted with sadness, over everything that I've lost, everything I miss doing, and everything I had planned to do, and hoped to be.
My paralysis robbed me of the most basic human necessities (freedom, privacy, independence, and physical intimacy)."
I wish Symanski had learned to cope with paralysis. I do not necessarily mean cope with the very real physical struggles she faced but rather make a theoretical leap in logic. Comparing life with and without paralysis is inherently negative and misleading. There is life with paralysis and there is life without paralysis. You cannot compare the two--they are fundamentally different social experiences. Paralysis I would maintain robs a person of only one thing--equality. The civil rights of people with a disability are not valued and often violated. In fact, disability rights and civil rights are not considered by many to be comparable. I wish Symanski embraced her inalienable rights, rights that many people take for granted. Her death is a tragedy for her family and friends and an indictment on American society's failure to provide sub basic social supports for people with a disability.
I Hate the New York Times
I was having a good day until i read the New York Times. Yet again the NYT has published a story, in this case a review of a TV show, that left me deeply annoyed. Here I refer to a December 11 review, " Disabled Host, With the Emphasis on Able" by Jon Caramanica. A few will know Zach Anner, a man with cerebral palsy, who won a reality competition (Your Own Show: Oprah's Search for the Next TV Star) to host a program on the Oprah Winfrey Network. His show, Rollin with Zach, will air tonight. I doubt I will watch the show. But it is the review rather than his show that has me deeply annoyed. The NYT characterized Anner as "witty and charming and mildly zany. And also disabled". Why is that phrase, "and also disabled", included? In my opinion it is based on the assumption that people with a disability cannot be witty, charming and zany. Surely we people with a disability are miserable and morose. Another unfortunate passage sates that: "The inspiration in Mr. Anner’s story is implicit. Unlike most travel shows, on which the hosts feign omnipotence and fearlessness, “Rollin’ With Zach” often reveals Mr. Anner adjusting for his disability. Concern for his well-being is embedded into the show, as is the sense that things will not always go smoothly."
When I read these lines I wanted to scream. Why don't things go smoothly when Anner travels? The answer is simple: in spite of the law mass transportation remains either inaccessible or problematic for people with a disability. The reason for this is not because Anner cannot adjust for his disability but rather society fails to be inclusive to people with a disability. Problems abound because people with a disability are not valued. Equal access does not exist within the travel industry. Perhaps this is the reason Anner is not "fearless". Like many people with a disability he knows all too well that when traveling barriers to inclusion are common place. As for "concern embedded" into the show, I find this demeaning. Why should this concern exist? We people with a disability are perceived to be incompetent. Thus the all powerful bipedal people will out of the goodness of their heart protect the well being of people with a disability. This logic is not just wrong but provided the theoretical justification for excluding people with a disability for decades. Paralyzed people cannot fly in a plane, they are a safety hazard. People with a disability cannot attend public school, they are a fire hazard. Exclusion was not seen as a form of discrimination but rather done for the "well being" of people with a disability. Such a sentiment still exists today in spite of the fact the ADA was passed 20 years ago.
One last example should suffice: "Both initial episodes conclude with Mr. Anner attempting a water activity, surfing and then water-skiing, which he succeeds at, with some hitches. On a chair-swing ride at Navy Pier in Chicago the look of ecstasy on his face at the freedom of movement is genuine." A few things are assumed. Water sports and sports in general are beyond the ability of most people with a disability. Sports are for fit people, those without a disability. Implied is the refusal to perceive adaptive sports, in this case a water activity, as equally enjoyable. Why is "ecstasy" on Anner's face? Simple, disability is inherently bad and restricting. Disability is always compared to normal, meaning bipedal movement. Surely Anner must wish he was normal, not disabled. This is evident by the "freedom of movement". Of course the reverse is a lack of freedom and movement people with a disability experience. Easily ignored is that it is not the lack of movement that prevents freedom but socially constructed barriers. For instance I can ski but I cannot ski at all resorts because basic wheelchair access is absent.
The review incorrectly concludes that Anner is a "role model". Who exactly is he a role model for? People with a disability. I can assure you Anner is not my idea of a role model. My role models were people like Ed Roberts and Paul Longmore. These men questioned authority, bucked the system and won. They did not win for themselves but for all people with a disability. Roberts and Longmore made this country a better place for people with a disability. This I admire far more than any television program, especially one on the Oprah Winfrey Network known for fluffy self help pablum.
When I read these lines I wanted to scream. Why don't things go smoothly when Anner travels? The answer is simple: in spite of the law mass transportation remains either inaccessible or problematic for people with a disability. The reason for this is not because Anner cannot adjust for his disability but rather society fails to be inclusive to people with a disability. Problems abound because people with a disability are not valued. Equal access does not exist within the travel industry. Perhaps this is the reason Anner is not "fearless". Like many people with a disability he knows all too well that when traveling barriers to inclusion are common place. As for "concern embedded" into the show, I find this demeaning. Why should this concern exist? We people with a disability are perceived to be incompetent. Thus the all powerful bipedal people will out of the goodness of their heart protect the well being of people with a disability. This logic is not just wrong but provided the theoretical justification for excluding people with a disability for decades. Paralyzed people cannot fly in a plane, they are a safety hazard. People with a disability cannot attend public school, they are a fire hazard. Exclusion was not seen as a form of discrimination but rather done for the "well being" of people with a disability. Such a sentiment still exists today in spite of the fact the ADA was passed 20 years ago.
One last example should suffice: "Both initial episodes conclude with Mr. Anner attempting a water activity, surfing and then water-skiing, which he succeeds at, with some hitches. On a chair-swing ride at Navy Pier in Chicago the look of ecstasy on his face at the freedom of movement is genuine." A few things are assumed. Water sports and sports in general are beyond the ability of most people with a disability. Sports are for fit people, those without a disability. Implied is the refusal to perceive adaptive sports, in this case a water activity, as equally enjoyable. Why is "ecstasy" on Anner's face? Simple, disability is inherently bad and restricting. Disability is always compared to normal, meaning bipedal movement. Surely Anner must wish he was normal, not disabled. This is evident by the "freedom of movement". Of course the reverse is a lack of freedom and movement people with a disability experience. Easily ignored is that it is not the lack of movement that prevents freedom but socially constructed barriers. For instance I can ski but I cannot ski at all resorts because basic wheelchair access is absent.
The review incorrectly concludes that Anner is a "role model". Who exactly is he a role model for? People with a disability. I can assure you Anner is not my idea of a role model. My role models were people like Ed Roberts and Paul Longmore. These men questioned authority, bucked the system and won. They did not win for themselves but for all people with a disability. Roberts and Longmore made this country a better place for people with a disability. This I admire far more than any television program, especially one on the Oprah Winfrey Network known for fluffy self help pablum.
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