Technology has always fascinated me. I vividly recall being a sick child in 1969, the year the Mets won the World Series with my favorite player, Tom Seaver, leading the team. What I remember the most was listening to the games on the radio. Unlike today, in 1969 the World Series was played during the day. Kids had access to the latest information and scores. I have particularly vivid memories of the 1969 World Series because of technology. My father knew I loved the Mets, had memorized the stats of most players, and had a baseball card for each man on the team. He wanted me to feel connected to the games and I suspect distract me from my illness and the pain I was experiencing. To this end, he bought one of the first small transistor radios on the market. The radio could fit in the palm of my hand, truly a technological marvel, and within a day my hospital bed became the command center for the latest information on the World Series. Doctors, nurses, and workers from all over the hospital would stop by the ward and ask "what's the score". Some would ask to look at the radio and shake their head in wonder. I felt like the most important person in the world.
Not much has changed since 1969. We Americans love technology. We have embraced technology with gusto. When a problem arises we invariably seek a technological solution. Doubt me and simply observe college students or teenagers who cannot function without a cell phone, internet access, and text messages. This is not a critique but basic observation about how they access information and problem solve. While technology is wonderful and enhances our lives in a myriad of ways anthropologists have long observed that technological change takes places before social change. For example, the introduction of the washing machine reduced the labor for many women in the household but did not create gender equality. Gender equality has improved greatly but we are still far from true equality. The same can be said for people with disabilities--we are far from equal but have been empowered by technological advances. For example, I have witnessed a veritable revolution in wheelchair technology that has been driven by the bicycle industry. Carbon fiber wheelchair frames and quick release wheels are routinely used. Adaptive sports gear abounds and my life has been improved as a result. But I firmly believe our struggle for equality is not an issue of technology but one of social bigotry. Thus I have mixed feeling when I finish articles like the one I just read in Scientific American about the robotics involved in creating a "smart wheelchair". John Spletzer, an associate professor in the Computer Science and Engineering Department at Lehigh University is building on his work in with autonomous vehicles to create "smart wheelchairs". The wheelchairs Spletzer is designing use artificial intelligence, lasers, sensors, and mapping software technology to operate and navigate power wheelchairs. The prototype wheelchair can navigate sidewalks, parking lots and outdoor areas. The last accomplishment, outdoor areas, impressed me as did a quote from Spletzer: "My work aims to push the envelope in wheelchair autonomy. It will not be limited to structured indoor environments. Instead, it investigates the much more difficult problem of autonomous operations in unstructured environments outdoors".
I have no doubt Spletzer's so called "smart wheelchair" is on the cutting edge of technology. I wish him well but hope he is attuned to the fact most people with a disability do not have significant financial resources. And if I have learned one thing about contemporary technology it is expensive--very expensive. Time will tell if Spletzer's invention will be commercially viable and this is where society fits in the picture. There is a demand, need, for such a technologically advanced wheelchair. In fact millions of people could benefit. But do we as a society value the people that could utilize this technology. In a word, no. Previous examples of technologically advanced wheelchairs have all failed. They did not fail because they were not needed but rather insurance companies balked at the price and refused to purchase them. Why empower a person with a disability with a wheelchair that costs thousands of dollars when one that costs a few hundred dollars will suffice. This is a social problem that must be addressed and cannot be solved by technology. Spletzer's overall goal, "unprecedented levels of autonomy", is admirable but the barriers to equality are deeply rooted in the way society perceives people with a disability. Society may love technology but is socially selective in how it is utilized. Sadly, everything I have experienced in the last thirty years leads me to conclude society does not think we people with a disability are worth the expenditure. Expensive technology is better of being utilized elsewhere. This may be wrong and may over time change but is the world I live in.
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.
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Wednesday, December 16, 2009
Technological and Social Change
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Sunday, December 13, 2009
Sex, Drugs, Rock & Roll and Hollywood
Yesterday when I finished writing my post about Hollywood prejudice against actors with a disability I came across news that a new film about Ian Dury is being released in January 2010. Titled Sex, Drugs & Rock & Roll, the film chronicles Dury's life and rise to stardom. Dury was a key figure in Punk Rock, lead singer of the Blockheads and an influential song writer. Avid readers of this blog will recall I wrote about Punk Rock last June and the impact it had on me when I was first disabled. By far the punk song I liked the most aside from the Sex Pistols God Save the Queen was Spasticus Autisticus. The refrain in Spasticus Auticus empowered me to change--to become assertive in a way I was not sure was possible. Now many years later I am hopeful the film will delve into this important song written for the International Year of the Disabled circa 1981 and Dury's experience with polio as a seven year old boy. Dury wore a heavy leg brace (a caliper as the British call it) and used a walking stick. Dury also went to a "special school", Challey School for Crippled Children. How he emerged from his experience with polio and a segregated school system in Britain amazes me. I am amazed not because he adapted to polio but rather overcome what must have been overwhelming social bias and stigma.
I eagerly await the release of the film and look forward to how the filmmakers deal with the impact polio had on Dury physically and socially. I am particularly hopeful because the film about Dury is not being produced by an American Hollywood producer or studio. Another major variable is that the young Dury will be portrayed by Wesley Nelson, a 13 year old actor who has cerebral palsy. Imagine that--a young actor with extensive experience on television playing a character with a disability. Based in Cardiff, Nelson has stated he will draw on his own experience with disability to understand a man he never met and will portray. Nelson noted that "I read a lot about Challey, but a certain degree has to come from you and your emotion. You have to understand his surroundings which and I drew on my experience with cerebral palsy and partly used that to understand him, which you could say was handy". Handy indeed! Here is an actor with a disability getting a chance to break into films and perceives his experience with a disability as a positive. If a 13 year actor can grasp this why can't movie producers get it? Well it appears as if the producer of the film, Damian Jones, drew on the expertise at 104 Films, a production company with an international reputation in the field of disability cinema and strong connections to the UK Film Council. Not content with just an actor with a disability, during production the filmmakers also operated a disability training program also connected to 104 Film. Surely a more nuanced understanding of disability as portrayed in the film and among the production company are a likely result.
When I read about Sex & Drugs & Rick & Roll I thought about how the acclaimed American television show Glee missed a golden opportunity to portray disability in a complex way. Instead, Glee claimed no qualified actor in America could be found to play the part. The result was a poor at best episode that relied on well-worn ideas and featured a bad scene of people dancing that used wheelchairs. Perhaps the result would have been the same if an actor with a disability was hired--we are talking about American television afterall. But somehow I doubt the episode would have been quite as bad as it was. There is something to be said for having direct experience with disability. And the fact is there are times when having a disability is an advantage. Few if any people without a disability realize this. And I am certain no producer in Hollywood thinks this way. Perhaps if we had more groups like 104 Film more actors with disabilities would be hired. I guess I am still dreaming and hopeful a world where I am considered equal will exist.
I eagerly await the release of the film and look forward to how the filmmakers deal with the impact polio had on Dury physically and socially. I am particularly hopeful because the film about Dury is not being produced by an American Hollywood producer or studio. Another major variable is that the young Dury will be portrayed by Wesley Nelson, a 13 year old actor who has cerebral palsy. Imagine that--a young actor with extensive experience on television playing a character with a disability. Based in Cardiff, Nelson has stated he will draw on his own experience with disability to understand a man he never met and will portray. Nelson noted that "I read a lot about Challey, but a certain degree has to come from you and your emotion. You have to understand his surroundings which and I drew on my experience with cerebral palsy and partly used that to understand him, which you could say was handy". Handy indeed! Here is an actor with a disability getting a chance to break into films and perceives his experience with a disability as a positive. If a 13 year actor can grasp this why can't movie producers get it? Well it appears as if the producer of the film, Damian Jones, drew on the expertise at 104 Films, a production company with an international reputation in the field of disability cinema and strong connections to the UK Film Council. Not content with just an actor with a disability, during production the filmmakers also operated a disability training program also connected to 104 Film. Surely a more nuanced understanding of disability as portrayed in the film and among the production company are a likely result.
When I read about Sex & Drugs & Rick & Roll I thought about how the acclaimed American television show Glee missed a golden opportunity to portray disability in a complex way. Instead, Glee claimed no qualified actor in America could be found to play the part. The result was a poor at best episode that relied on well-worn ideas and featured a bad scene of people dancing that used wheelchairs. Perhaps the result would have been the same if an actor with a disability was hired--we are talking about American television afterall. But somehow I doubt the episode would have been quite as bad as it was. There is something to be said for having direct experience with disability. And the fact is there are times when having a disability is an advantage. Few if any people without a disability realize this. And I am certain no producer in Hollywood thinks this way. Perhaps if we had more groups like 104 Film more actors with disabilities would be hired. I guess I am still dreaming and hopeful a world where I am considered equal will exist.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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