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Tuesday, April 21, 2009

Survey of Paralysis: What to Make of the Figures

Major news outlets such as the Washington Post, USA Today, Wall Street Journal, AP, and New York Times are reporting that a new national survey has revealed 5.6 million people in the U.S. have some form of paralysis. All news outlets highlight that the Christopher and Dana Reeve Foundation funded the study. But that is all the Reeve Foundation did--fund the study and by extension ensure the results would be widely disseminated given the foundation's ability to manipulate the press. Only the Wall Street Journal prominently noted that the study was not designed or implemented by the Reeve Foundation.

The national survey funded by the Reeve Foundation was conducted by a team of researchers headed by Anthony Cahill, nationally recognized for his work in the areas of evaluation and research methodology. Cahill is the Division Director of the Division of Disability and Health Policy at the University of New Mexico Center for Development and Disability. The national survey took three years to design and more than 30 experts in paralysis and statistics were involved as were 14 leading universities. In essence the results are based on a national telephone survey of more than 33,000 American households in which participants were asked whether they or anybody else in the household had any difficulty moving their arms or legs. Those that replied yes were included in a broad group if they were paralyzed by a disease or injury that affected their central nervous. system. Among the most common central nervous systems conditions included were spinal cord injury, multiple sclerosis, stroke, and cerbral palsy. What exactly did the national survey reveal? Here are some figures:

1.84% of the population reported some form of paralysis or about one out of fifty American citizens. The average age of those paralyzed was 52. The average length of time since the onset of paralysis was 15.6 years. 54% of those paralyzed are men, 46% female. The number of people living with spinal cord injury is 1.275 million people, the second leading cause of paralysis (stroke is the leading cause of paralysis).

I strongly suggest readers not be content with the above brief summary of the statistics I have provided. Readers should also not rely on newspaper accounts as well. I suggest readers look at the full report because it can be found on-line at the University of New Mexico School of Medicine Health Sciences Center. The national survey is not exciting reading, 25 pages of pretty dull charts and graphs.

As an anthropologist, I do not think much of national surveys. I much prefer a random sampling of intensive studies based on ethnographic research. From such intense localized studies one can discern the greater cultural significance of what was observed. We anthropologists have been doing this for a century and have published some surprising and controversial results. In spite of my bias, studies such as the one spearheaded by Cahill and his research team cannot be dismissed. I was not surprised by any of the findings--not even the much higher number of people that reported being paralyzed by spinal cord injury (five times higher than previously estimated).

Only one aspect of the national survey leaped off the page: the depressing cycle of poverty and paralysis. Poverty and paralysis
go hand in hand with one another. 24% or 977,000 people who are paralyzed earn less than $10,000 a year. 15.4% or 626,000 people who are paralyzed earn between $10,000 and 15,000 a year. Combine these figures and 34.4% or 1,603,000 paralyzed people earn less than $15,000 a year. Bt=y any stretch of the imagination these are sobering numbers.

What the survey cannot reveal is the most important variable associated with paralysis: Why. Why are paralyzed people uniformly poor? Being paralyzed is not cheap, in fact it is down right expensive to be paralyzed. Employers don't want to hire paralyzed people, insurance companies don't want to provide health care coverage, and the durable medical goods industry knows they have a captive audience. The end result is that too many paralyzed become depressed, remain unemployed years after injury, estranged from society, friends, and family. Where do such people end up? In a hospital or institution from which they are not likely to emerge. This is not a medical problem but a social failure. Does it really make sense to warehouse people who are paralyzed in institutions? Does it make any sense for an insurance company to refuse to purchase a wheelchair cushion that costs $500 but pay for hospital treatment for a pressure sore that can easily run into six figures? Does it make any sense to reject community and based care for paralyzed people that would empower them? These are just some of the conundrums people who are paralyzed encounter daily. To date, there are no solutions to these vexing social problems I have just listed. In fact I sincerely doubt that any solutions will be found in my lifetime. This realization makes me grateful for the support of my family because I am all too aware that there is not a chance I would drive a nice car, live in a beautiful home, or be a father had I not had their support financially and personally. I only wish other people who are paralyzed had similar familial support.

Monday, April 20, 2009

Why I Hate the New York Times

This weekend I read a dreadful article in the New York Times. On April 19 in the Arts section on Dance an article, "Still Dancing in Her Dreams", by David Barboza appeared. The article was about a Chinese dancer Liu Yan, considered to be China's foremost classical dancer. The entire focus of the article was about how Liu Yan was paralyzed in an accident two weeks before the Beijing Olympic Games (she was to be a featured performer). Many such stories of life before and after paralysis appear in newspapers. The vast majority of such articles focus on how hard the transition is from able bodied to disabled with scant attention paid to why such a transition is difficult. I try to avoid reading these articles because they tend to be maudlin, overly sentimental, and leave the reader with a singular impression: thank God I am not the one that is paralyzed. The article by Barboza takes this genre of writing to an extreme. Barboza makes it crystal clear being paralyzed is a tragedy of epic proportions. Nothing could be worse than paralysis for it destroys one's career, ambition, and life. A few examples of the overwhelming negativity include the following:

"At the peak of a golden career Ms. Liu lost control of the very limbs that experts say made her dances so magical".

"She is now struggling to come to grips with the unimaginable while hoping beyond hope that some day she will walk and even dance again".

"Where she once had incredible control, now there is none".

"Her dreams of creating her own dance dramas have evaporated and she is still only 26".

And what does Ms. Liu Yan have to say about paralysis? Here are some quotes courtesy of Barboza:

"Life is not that sweet or beautiful after an injury," she said tearfully." You confront a lot of dilemmas and pain".

"Don't be too sad for me. I'll be strong".

"From dancer to a paralyzed person--its a bitter reality".

"I can't take it. Before I could lift my legs to my head. And now my legs lie dead on the bed".

In contrast to Liu Yan I have had over thirty years to become accustom to paralysis. The transition from being a person that can walk to one that uses a wheelchair is not easy. Yet in looking back at this transition the easiest part was physical. We humans are remarkably adaptable and it does not take long to learn what rehab people call activities of daily living. The hardest part of paralysis is the social transformation. Thanks to the New York Times article my thoughts went back to my first forays in public as a paralyzed person using a wheelchair. I instantly hated the looks of pity, scorn, and sorrow when I interacted strangers. It was not until I got to graduate school that I learned there was nothing wrong with me--I did not have some sort of horrible inherit human flaw everyone could see except me. At Columbia I met Robert Murphy who gently suggested that I was the same person I was before I was paralyzed. He told me that the skewed social interaction I experienced had less to do with me than it did with society's assumptions about the meaning of disability. What I discovered in a primal way was that I had acquired a stigmatized identity. When normal and stigmatized individuals interact Erving Goffman called this a "primal scene of sociology". That is well established social guidelines are undermined when a significant flaw exists, in my case my presence as a person that uses a wheelchair. Goffman made this observation in the early 1960s and after reading Barboza I cannot help but wonder if anything has changed.

Paralysis is a unique problem and society is particularly resistant to changing its bias against those that use a wheelchair. This fact totally eluded Barboza and many others. I know this because I still encounter skewed social interaction. This makes me shake my head. Why are people so dense? Why did Barboza not focus on what possibilities remain open to Liu Yan? Perhaps her life after paralysis could have been used to discuss the role adaptive dance has yet to play in Chinese culture. Surely Barboza is aware of Gimp, a dance performance that was recently reviewed in the New York Times. No, Barboza like many others sees paralysis as nothing more and nothing less than a tragedy. Until this thought process changes in his mind and that of society paralyzed people will continue to be confronted with Goffman's primal scene of sociology. Surely we as a people and culture can do much better.

Sunday, April 19, 2009

More on Susan Boyle

Susan Boyle has become an overnight sensation. Over 20 million people have watched her performance on Britain's Got Talent. She has been besieged by interview requests and I cannot imagine what she is going through. I truly. As one would suspect, the media has asked Boyle a host of particularly stupid and rude questions. In reply she has been as generous as humanly possible. I find the media saturation about Boyle frustrating because no one has asked the questions I consider important. For example, why is Boyle unemployed? How could someone with such an amazing voice remain completely unknown? If she tried to make it in the music business and failed how did this happen?

I sincerely hope Boyle's fame will enable others that do conform to accepted notions of beauty and normalcy to be given a chance to excel. This point was made on the blog Sexability and below is a great quote:

"All one has to do is look at Susan, her facial structures and features to know she's a bit "different," and is disabled. But not THAT disabled, obviously, as she has been able to stay at home and take care of an ailing mother for years instead of being the one cared for. Read the story of her life and it is the story of so many of our lives, it is not her difference that has disabled her, but rather societies judgement, shame and fear of her difference. Society's blatant unwillingness to give Susan a chance".

Society is indeed unwilling to give people outside the norm a chance. I doubt Boyle was ever given a real chance at success in the music business. In much the same way, people with a disability are not given a chance to enter the work force. When confronted with two qualified applicants, one disabled and the other nondisabled who do you think will get hired? The person without a disability gets the job in the vast majority of cases. In part this form of non verbalized discrimination accounts for the high rate of unemployment among people with a disability. Yes, children with disabilities are entering and receiving a education with their nondisabled peers but what happens when they turn 21 years old and age out of the system? This is a significant problem, one that has not been addressed. What I am striving to get across is that Boyle and all those that fit under the academic rubric as "the other" deserve a chance. Like Boyle, people with a disability just want a chance. If we fail at least we had an opportunity. Failure is part of life as is success but to be denied an opportunity is the real issue Boyle and disabled people encounter daily.