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Saturday, March 28, 2009

Life After Spinal Cord Injury

The print media is dying because I am among the millions or people that see no reason to purchase a newspaper unless I want to start a fire. Yet I wonder and worry about how people will access the news in the future. Today, is one of the days I am very worried because I just read and watched the New York Times on line series "Patient Voices", part of the NYT Well Blog. The March 26 story was entitled "Voices After Spinal Cord Injury" and featured four men and two women that experienced spinal cord injuries. The story annoyed me greatly for a number of reasons large and small.

First, the people chosen were not your archetypical person with a spinal cord injury. Most appeared to own beautiful homes, that is expensive, replete with access features like an elevator. Others were portrayed getting into cars with an elaborate lift or wearing obviously expensive clothing. This is not the norm, indeed, this is well outside of the norm. For instance, one man, Francesco Clark, a resident of Bronxville, has been profiled in the NYT in the past. He comes from a wealthy family and is active in the Christopher Reeve Foundation. I do not begrudge these men and women their wealth. I am merely pointing out that the vast majority of people with a spinal cord injury do not possess such wealth and struggle financially.

Second, the entire focus of the story is negative. The people portrayed are considered "patients" who "suffered" a "tragic" injury in the "prime of their lives". The mere fact they are alive and not sitting in a room crying is amazing, "inspiring", and a "reminder of the strength of the human spirit". Oh, please spare me from such trite and antiquated beliefs about the nature of disability. This stereotypical portrait of disability is not just dehumanizing but at odds with reality as I have known it for the last 30 years. You see, I do not consider myself to be one iota different than any other human being than walks. Most people I know that are paralyzed feel the same way. We crippled people have rights, civil rights, and are not afraid to assert them. Get over it.

Third, sentences such as the following miss the point badly and are misleading: "Life after spinal cord injury is filled with the challenge of accepting your injury, coping with your limitations and adjusting to an entirely new way of seeing the world". I assure readers "accepting your injury" is pretty simple when you have no choice. One can feel sorry for themselves and waste their life or accept the fact one will never walk and adapt. I chose to adapt as do virtually all those that experience a spinal cord injury. Only the media likes to focus on those few that can think of nothing else but walking. Why does the media do this? It reinforces the social superiority of those that can walk and provides the rationale for exclusion. As for "coping with your limitations", this does not take long. Once medically stable, most people that experienced a spinal cord injury are self sufficient within months. Much depends upon the level of injury and, sadly, the level of health insured. Being paralyzed I can state without a shadow of a doubt is expensive. But "coping" is the wrong word to use. People, all people, adapt to different circumstances and life after a spinal cord injury is all about adapting. The big difference in adapting after spinal cord injury is that it is a one way street: people who have a spinal cord injury are expected, demanded, to adapt. Our culture does not. Sure we have laws such as the ADA but equal access for those that use a wheelchair is not valued or is perceived to be a choice. Finally, as to "adjusting to an entirely new way of seeing the world" why should the view of the world be any different? Sure I have a physically lower perspective sitting in my wheelchair but the real change is social. I see the world just fine but the way I am perceived has been radically altered. I am part of a the largest most disenfranchised minority group in the world. If I were disabled in a Third World country the odds are good I never would have celebrated my 21st birthday because I would not have survived. This is a human rights travesty few know about. In the United States most people who have a disability, 70%, are unemployed. Mass transportation remains difficult to access and few homes are constructed that are accessible. Durable medical goods cost a fortune and most people with a high level of paralysis live in a nursing home. This I assure is what changes your view of the world. The social obstacles that are built into the structure of our society are the real issue not paralysis from a spinal cord injury.

There was one positive element of the NYT story. I was expecting the comment section to be filled with observations about the men and women in question and how they had "overcome" disability. Much to my chagrin, many of those that took the time to post a comment were as critical as I was. Perhaps progress is occurring. Too bad this point eluded the NYT.


thailandchani said...

Very good points! I suppose the thing is that this is a culture (in the US) that tends to "Other" anyone who is different and just assumes that they're miserable. After all, they can't participate in the things the culture values.


william Peace said...

I think people with a disability being a part of the other, different, is a major factor. But when will things ever change? Abuse of people with cognitive disabilities is all too common and as the economy tanks the first items to be cut from budgets pertain to people with disabilities. I am sick and tired of being sick and tired of such civil rights violations. Sorry for the cranky reply.

Unknown said...

I think this was the same article that I read on a Los Angeles injury lawyers site about two days ago. I'm pretty sure that it was the same one, but I thought it took place in LA not in NYC.