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Thursday, September 12, 2013

Disability as Disaster

The video is entitled "From One Second to the Next". Texting and driving is dangerous. I tried it once and almost killed myself. I never attempted to text while driving again. I get the need for this sort of video. In fact it has been viewed over two million times. I assume it is widely shown in high-school and colleges across the nation.  This age group are utterly dependent upon texting. I get this too.  If I want to talk to my son I text him please answer the phone. So yes this video is very much needed.

The first personal story clearly fits into a badly dated disability as tragedy genre. I had hoped that after 40 years of progressive legislation designed to empower people with disabilities a video such as this one would be a thing of the past. Sadly though, the pity/trajedy model of disability still resonates. I do not feel sorry for the mother or her son X. In much the same way, I hope no one feels sorry for me. I surely wish her son never experienced a severe spinal cord injury. I can say the same about any person that damages their spinal cord. But accidents happen--horrible life changing accidents happen.  I truly wish the young boy X was not paralyzed. I simply wish the story could have been framed differently.  I cringed when I heard the mother state "his legs are gone, his wheelchair are his legs".  I also cringed when she stated her son is "on life support" and she cannot tell her son "go in the yard and play".

At issue is how the story is told. It is designed to put the fear of God into the hearts of parents. It is designed to scare young people too. For what is the worst case scenario? A severe disability.  What is the worst disability one could have? Living on "life support".  This mother is absolutely correct about one thing: when it comes to disability "everything is a production". This both true and false. It is true that spontaniety is often impossible when one is disabled. The "production" in life for a person with a disability exists on a sliding scale. For a person such as myself who is independent the "production" process is minimal. It takes me longer to do mundane tasks and as most people with an injury comparable to mine this limits what can be accomplished in a given day. Everything being a production is false in most instances.  People do not ask the all important why? When I am out and about the why figures into a social and physical environment designed for people who are bipedal.  Wheelchair access is simply not valued. Ramps are often perceived as an eye sore and located in the back of buildings. Access often involves entering a remote and hard to find door. As a result, I have seen the worst parts of some of the best buildings in New York City. Elevators are often turned off. Wheelchair lifts are often used to store garbage. The list of violations are long. The root cause however is the same: access is not valued.  This creates a destructive vortex. Businesses spend a great deal of money to make buildings accessible. This is not done by choice but to comply with the law.  So when the wheelchair lift is not used or the accessible entrance in the back is rusted shut people get mad and think money was wasted. Again, no one asks the question why. Why is the lift or elevator not used? Well in my experience a locked elevator or locked wheelchair lift is a waste of money and useless.

Let me provide one example. The sandwich food chain Cosi is an access nightmare. The look they prefer involves tables at the entrance and a sandwich making station at a higher level up about four to eight stairs. In the Cosi stores I have been in often have a wheelchair lift. Great. Not so fast. In every Cosi store I have been in the wheelchair lift is locked. Only the manager has the key. Most stores use the lift as storage for either trash or surplus supplies. When I ask for the wheelchair lift to be cleared I instantly become a pain in the ass customer. I have even seen more than one wheelchair lift purposely rendered in operative by breaking the key in the off position.
The point I am trying to get at is that I wish this mother and her son well. But they need to rethink life and how they fit in it. Yes, everything is indeed a major production for this mom and her son. Life as a vent dependent quad is not easy. It is in reality hard and expensive. Some might say the same thing about me. People often comment about what a hassle it is for me to get my wheelchair in and out of my car. What choice do I have? None. And frankly I have never thought of this mundane activity as anything but, well, a mundane activity. It is not a blip on my radar. What is very much on my radar is the refusal of bipedal people to accommodate what the ADA deems "reasonable accommodations". This too is what I want this mother and her son to learn. The people who often determine what is and is not a reasonable accommodation know nothing about disability. To return to the example of the Cosi food chain, I am sure the corporation that required its stores to have a wheelchair lifts were meeting the letter of the law. I bet an executive may have even thought it is not just a legal requirement but the right thing to do.  The failure here is not physical but rather social. No one values those wheelchair lifts. At a fundamental level this is deeply entrenched. Culturally we believe that a choice is involved as to when, where, and how much will be spent on making a building accessible.  This is false. The law is very clear.

I find videos such as the one above counter productive. The take away message is not just texting and driving is dangerous. The message the mother effectively delivers is disability is inherently bad. Disability is a tragedy.  I consider this message to be as deadly as text messaging while driving. Thus yet another opportunity was lost. This has been a recurring theme for decades and as a result social progress in terms of disability proceeds at a glacial pace.