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Tuesday, March 6, 2012

Cure Industry Tactics: Have They Changed?

I have been cleaning out my office for weeks. I have sold many books and discarded 30 years worth of academic journals in order to free up shelf space. This has led me to find all sorts of things tucked into books. Below is one image I came across

Before I deconstruct this image let me state in no uncertain terms a cure for spinal cord injury is a laudable goal. Given the choice between life with or without paralysis I would choose not to be paralyzed. I suspect every person with a spinal cord injury would say the same thing. The point I want to make very clear is I am not opposed to a cure for spinal cord injury. However, I am opposed to the fund raising tactics used by foundations dedicated to a cure. I worry about how such tactics impact the lives of people with a disability. This is especially true since the vast majority of fund raising methods continue to rely on a dated charity model of disability.

The image above is 12 years old. So yes it is dated. But keep in mind this was published well after the ADA was passed. A time when I was supposedly awarded equal rights. I have no doubt the ad was effective because it relied on preconceived ideas about disability and wheelchair use. What this ad effectively does is laud walking as the one and only means of locomotion. Walking is good wheelchair use is bad. Thus all people that use a wheelchair dream of walking running and making love. The blunt message is pity people with a spinal cord injury. They cannot do what we take for granted--walk, run and make love. I assure you some 34 years after I took my last step walking and running never crosses my mind. As for the making love, well I am a red blooded American male and enjoy sex. And yes paralyzed men and women have sex and enjoy it. Why we can even reproduce! My son is evidence of that fact.

I hate to burst the bubble of the bipedal masses but I do not dream about walking some day. Walking is simply not relevant. Indeed, as I have stated many times walking is highly over rated. No, what I think about is the injustice ads such as the one above foster. The toughest part of wheelchair use is not the fact I cannot walk. It is the social and architectural barriers I encounter every time leave my home. It is the social and the needless architectural barriers I rail against. This is in my estimation a realistic goal worth fighting for--equality. Equality is what we people with a disability want--not some platitudes about a cure for paralysis. We people with a disability want to go to work, own a home, have a job, kids, education and all the other mundane things that make up life in American society. We want to go out the door of our home and not be subject to baseless prejudice and stigma. We want to travel and not be forced to make a dozen phone calls to determine if a building or bus service is accessible. We do not want to think about access all the time. We want to go grocery shopping and not have mothers yank their kids hand and say "watch out for the wheelchair". We want to be ordinary, equal to others. But ordinary we are not. So if there is something I dream about it is the day when I can relax and go anywhere and not worry about negative social interactions. I do want to be told I am an amazing person because I can get my wheelchair in and out of my car. This is utterly dehumanizing. Simply put I am a sentient human being. I would like to be treated as such. This is not too much to ask. It is in fact what I dream about.


Phil Dzialo said...

Ah, the curing people culture? Ok, as long as curing money does not subsidize $500,000 salaries of non-profits admins, big pharma incentives, free t-shirts, advertising, etc. Let's spend curing money on social supports for disabled and also let's make sure people don't starve to death or have access to basic health care. We need to move away from celebrity cures to making sure the very basics are available for all, and not just the US. Not popular, but the simply the right things to do!

william Peace said...

Phil, You will not get an argument from me. I too would prefer to see support services that were appropriate rather than research into cure. This is a minority viewpoint--at least based on the severely critical email I receive. The cure industry however has its hooks deeply ingrained in rehab culture today. So we get millions spent on dubious inventions such as the exoskelelton and pennies spent on wheelchair technology. Worse yet, too many leave rehab with a borrowed or ill fitting wheelchair. This makes no sense to me. But according to surveys this is what newly injured people are interested in. Makes me feel divorced from rehab I experienced long ago.