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Wednesday, January 7, 2015

Obsession with Walking

Google the words paralyzed and walking.  A slew of links will appear that hail recent medical advances implying paralyzed people we be able to walk agin in the very near future. Stem cell therapy and the exoskeleton are the rage these days. Mainstream media outlets breathlessly praises any and all efforts to get the paralyzed upright an walking. This reached a fever pitch last summer at the world cup when a young man in robotic exoskeleton kicked a ball. One and all were enthralled. I just sighed. Yet another story that glorified walking. The message is far from subtle. Walking is good. Wheelchairs are bad. Paralysis is a terrible fate that compromises the life of millions of people. This is grossly misleading. Numerous corporations are experimenting with exoskeletons. They are not conducting such research out the goodness of their heart. There is money to be made selling the idea that all paralyzed people want to walk. People who have no conception of paralysis suck up this idea like nectar of the Gods. When I read stories expounding the virtues of the exoskeleton I shake my head in wonder. Are bipedal people really that ignorant? Sadly yes they are. Your typical bipedal person exposed to a barrage of misleading news stories is led to believe all paralyzed people share one goal in life--walking. Please cue the soaring inspirational music accompanied by the brave and noble young man or woman struggling to walk surrounded by health care professionals, computer scientists, and engineers who share the same ritualized ideal.

The irony of the exoskeleton is that one group of people have no interest in this supposedly ground breaking technology. Come on think. Remember I am the bad cripple. Stretch your mind. Did the veritable light bulb go off yet? Yes, you guessed it. In my opinion the vast majority of paralyzed people have no interest in the exoskeleton. Gasp! Walking has as much relevance to my life as a desire to walk on Mars. There is even a website aptly named Walking is Over Rated. Link:
The exoskeleton is not nor has it ever been about walking. The exoskeleton is about selling an idea, walking, and making money. Corporations exist to make money and are the very core of capitalism. Red Nichols has humorously noted that "my wheelchair is a very capable tool and to be honest, the last thing I want is to be strapped to a District 9-esque robot and become a puppet in some corporation's half-baked execution of an obsession with walking." Link:
Obsession. People in capitalist society are obsessed. Lenny Davis has argued that we Americans admire obsession in others. We revere musicians who obsess over their ability. We admire professional athletes who excel at sports even if their body and brain are severely damaged when they retire. We admire the paralyzed who are obsessed with walking. Think Christopher Reeve who was beloved post paralysis with his single minded goal of a cure for spinal cord injury. In recent months I have noted  multiple stories about paralyzed brides and paralyzed pregnant women. The headlines are always the same and supposedly inspirational. Delete inspirational and think obsessed. Think of the spectacle and symbolism involved. Bride using wheelchair going down the aisle is not a good visual. Bride going down the aisle with flowing wedding dress and walking is a tear jerking event. The latest paralyzed bride portrayed in the media is Tami Martin. She was paralyzed in a car accident and is a very low level paraplegic. In the last week dozens of stories have appeared in mainstream news outlets. The headlines are exactly what one would expect: "Paralyzed Bride Walks Down Aisle", "Dream Come True: Paralyzed Bride Defies Doctors." All these stories fit squarely in the inspirational category that glorifies walking as the one and only ideal. The more obsessed you are with walking the better. Add in the visuals associated with weddings and the obsessed bride who wants to walk down the aisle is revered--a real life American hero.

The flip side of the obsession with walking is not discussed. No one wants to talk about the gritty reality people who cannot walk are forced to navigate. No one wants to think about the barriers to health care and appropriate adaptive technology. Paralyzed people who want to be ordinary are a problem. They are stigmatized for their failure to follow the societal script. Worse, they force others to obey the law, the ADA in particular, that prohibits discrimination against people with a disability. Like typical others we people with a disability want to be able to work, own a home, and have unfettered access to mass transportation. For this to happen disability must be placed in the larger societal, historical, political, and medical context. It requires a completely new way of looking at disability. It requires people to think. It cannot be reduced to a sound bite on CNN. The general public wants to be sold a bill of goods that borders on fantasy. The video below of Olympian Amy Van Dyken-Rouen is typical of the reality that does not exist for 99% of people with a disability.

I love to cook. I am a foodie. I do not have nor have I ever met another person with a disability that could even dream of affording this kitchen. I am thrilled the technology exists. I am equally thrilled top notch adaptive sports gear exists for paralyzed people. I know fantastic light weight wheelchairs exist as well. The same can be said for power wheelchairs. Adaptive gear that empowers people with a disability exists. Yet I know no one that can afford the sports gear or wheelchair they know could enhance their life. We are forced to settle for what is covered by health insurance and affordable. This is never discussed. Instead we try to force millions of people with a disability to adapt to the physical and cultural environment hostile to our presence. In fact the only way to fit in and be accepted is to obsess over walking. I refuse to play this game. I resist and always will. I am quite happy with my body. I do not care one iota that I will never walk again.  My wheelchair, though dated, is a wonderful piece of technology that has served me well. Come on bipeds, get over yourself. Think and imagine what life can be. Stop obsessing over walking and use your creative mind.