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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.

FATE DOESN'T ASK. IT COULD ALSO BE ME. OR YOU.

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.

9 comments:

Jo Kelly said...

I'm with you Bill. I once truly believed that change would come - easily in my lifetime. Now I'm not so sure about that. There is still a glimmer of hope!

william Peace said...

Jo, Of course there is hope! What worries me the most is that we will create British like cuts to the social support networks. The social situation for people with a disability in Britain is perilous and the cuts to date have been devastating.

Lynn said...

But wait - it gets even better...

http://youtu.be/3G4ghpecjSA

He's not actually a wheelchair user at all. He's just looking that grim and tragic because he *could* be.

O.o

william Peace said...

Lynn, Wow, I am stunned. Speechless even. You are correct the man is not paralyzed and the video you linked to is even more offensive. I will follow up on this with another post. Thanks!

Middle Child said...

I have just discovered your blog after finding "Not Deat Yet" I am from Victoria Australia. My husband Don was killed after brutalisation inside the Australian Public health system in 2007. He was what might be termed "a bad cripple" and used to words - we were together for 35 years, 25 of them after his accident in which he broke his neck. We fought together against those who tried to impose their views of what the quality of our life was... I will have plenty of reading in here and I thank you for what you have expressed. We fought hard after Don was killed to expose what was done to him. No one was ever accountable and I became the problem. I wrote his story because I had to - I though what was done to him was bizarre and unusual but am realising that in today's "health" car system it is becoming the horrible norm. I have a web page www.withoutduecare.com.au abd am happy to either send you a copy of his story (book - no cost of course) or a we page where the story can be read. Don was subjected to dreadful suffering and I still have nightmares as certain scenes still flash past - but nothing I deal with compares to what he endures without choice - and now I realise thousands of others. The book can be seen at http://preventdisease.com/news/pdf/WithoutDueCare.pdf

Middle Child said...

I have just discovered your blog after finding "Not Deat Yet" I am from Victoria Australia. My husband Don was killed after brutalisation inside the Australian Public health system in 2007. He was what might be termed "a bad cripple" and used to words - we were together for 35 years, 25 of them after his accident in which he broke his neck. We fought together against those who tried to impose their views of what the quality of our life was... I will have plenty of reading in here and I thank you for what you have expressed. We fought hard after Don was killed to expose what was done to him. No one was ever accountable and I became the problem. I wrote his story because I had to - I though what was done to him was bizarre and unusual but am realising that in today's "health" car system it is becoming the horrible norm. I have a web page www.withoutduecare.com.au abd am happy to either send you a copy of his story (book - no cost of course) or a we page where the story can be read. Don was subjected to dreadful suffering and I still have nightmares as certain scenes still flash past - but nothing I deal with compares to what he endures without choice - and now I realise thousands of others. The book can be seen at http://preventdisease.com/news/pdf/WithoutDueCare.pdf

Becky said...

I feel like I could type a book on this -- indeed such the critical issue. One reason I loved my last educational experience was they got to know me as a person with much joy in life, who has a disability. Not tragic in that piece - the civil rights violations are what is tragic.

Lynn said...

You really are speechless, aren't you, Bill?

While you think about how to respond to that truly bizarre ad (and I will say that I think the guy looked terribly uncomfortable doing it), let me throw another question at you. How do you feel about the also-large category of media spots that are not for fund raising, but for injury prevention - anti drunk driving and whatnot?

I got to thinking about this after seeing the viral video that's going around - the one the father made of his head-injured daughter who was injured by a drunk driver, wherein he implores people not to drink and drive.

Of course, people started right in, in the comments, with calls to "let her die." (Hello? She's not on life support...)

I have always felt that it's important for people to see the kind of damage that their behavior can cause. But it raises a lot of questions. Are there disabilities that are such unadulterated tragedies (such as severe brain injuries like the one in the video) that portraying them in a tragic light is fair and justified, or does that still chip away at the collective dignity of people with disabilities in general? In the case of disabilities with which people go on to lead meaningful lives, it possible to frame these kinds of warnings in a way that promotes awareness of the damage and loss that any reasonable person would want to avoid, without discounting the potential for individuals to survive such loss and not be defined by it? Just wondering about your thoughts on the whole "don't let this happen to you" genre of publicity.

william Peace said...

Lynn, I guess I am no longer speechless. Please read my latest post. I despise the sort of drunk driving ads you mention. The same can be said for the head injury. Prevention ads can be done well. I saw one such ad for cervical injuries in hockey. The ad depicted two xrays. A typical neck and a paralyzing cervical injury. The text was about how to protect your neck/ This seems appropriate.
Not sure how to answer the last part of your comment. I would simply observe life is what you make it. Of course complex variable beyond one's control come into play. Ugh, sorry this is not a very good reply.