Search This Blog

Tuesday, January 8, 2013

I want to be very explicit: the cure for spinal cord injury is a laudable goal. I am fully in favor of research for a cure to spinal cord injury. I am in favor of medical research designed to improve the quality of life for people with a spinal cord injury. I am in favor of technological developments in durable medical goods--that is improving mundane but critically important and empowering products such as wheelchairs. What I am opposed to is ads such as the above.


What does the above tag line mean? Paralysis is bad. Very bad. Paralysis should be feared. Some may feel it is even a fate worse than death. How do I know this? Strangers have told me this many times. People that are paralyzed are screwed, they deserve our pity. People who are paralyzed are sick all the time. They cannot work. They cannot do not do many of the routine things that makes life enjoyable. Forget about sex or marriage or having a child. Paralysis negates such life experiences. But wait there is a symbolic protection readily available: give money to wingsforlife and you will not only feel good but fate will spare you the experience of paralysis. The more you give the more you are protected. The more you give the better you will feel.

The cure industry is dependent upon fund raising tactics I find offensive. The dichotomy I see is hard to miss--charity versus a civil rights perception of disability. For a charity, the more pitiful a figure appears to be the more money one can raise. The ad above tries to be modern at a superficial level. The man depicted is distinguished looking. He has rugged good looks. He was a former 13 time Formula 1 Grand Prix winner. Note the tense--was. The real message is what a tragedy! This once vibrant and virile race car driver is paralyzed. This is a slick and effective form of charity. The public soaks this up like nectar of the gods. Paralyzed people hate this sort of imagery. I hate this ad. What the public does not know is that for over 40 years people with a disability have tried to dismantle a charity based understanding of disability. That is disabled people are unlucky and in need of charity, society's largesse. Millions of people with a disability need our help. Charities are there to fulfill the needs of people with a disability. Surely all people with a disability want to be cured. Who would want to spend the rest of their life in a wheelchair? This makes no sense. So let's fork over our hard earned money to those in need. Wow, I feel good too! I have earned some psychic protection as well. What a sweet deal.

People with a disability do not need charity. People with a disability need equality. People with a disability need society to understand a fundamental concept: disability rights are akin to civil rights. They are one in the same. Legislation in the last 40 years has sought to empower people with a disability. This legislative approach has largely failed. The social model of disability has failed as well. Disability is first and foremost a social problem, a belief that has utterly failed to resonate outside the disability rights community.  Thus my reaction to the ad above was anger. This ad demeans and belittles people with a spinal cord injury. At a symbolic level I wonder how much have we truly advanced since the days of the Jerry Lewis Telethon. The essential message is the same--pity those poor crippled bastards.

People with a disability have different needs that society has chosen not to value. That is the world is constructed for bipedal people and access for those who are differently mobile is an after thought. Access to mass transportation and accessible housing is problematic at best two decades after the ADA was passed into law. People with a disability are unemployed in stunningly high numbers. Access to affordable health care is impossible for far too many people with a disability. Equality, real equality, is decades away in my estimation. So yes, I get made when I see ads such as the one above. The image and successful effort to raise money is grossly misleading. In fact, a charity based approach to raise money is inherently demeaning. My struggle against social injustice is at odds with a charity based model of disability that relies on raw emotion. I am not optimistic about the future. I am asking a lot of people--people that have no idea what disability rights are that is. I am asking these people to use the most powerful and neglected part of their body--their brain. People need to learn to reject most if not all of what they learned about disability. When I see ads such as the one I have railed against deemed demeaning I know real social progress has taken place. I look forward to this day. I hope to live long enough to see it.

Monday, January 7, 2013

Out and About: Skiing in Vermont

I have not posted much lately. I am too busy having fun with family and friends. I spent some time in Vermont and skied at Pico Mountain. For those interested Vermont Adaptive Ski and Sports is a great adaptive sport organization. My good friend John told me I broke a lot of bad habits this week. For me the challenge of skiing is largely mental. The best part of skiing though is the lift and views from the top of the mountain. Had two great days of skiing. One day was bitter cold--well below zero. The second day it snowed off and on and was much warmer. I am sure when my son Tom returns to school at Hofstra University I will be posting on a regular basis again.