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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.


FridaWrites said...

It doesn't surprise me that it's been underestimated greatly.

You are right about paralysis being expensive. My disability is expensive but would be far more so with paralysis. We need higher earnings to compensate, not less, and are generally willing to do everything we can to get there. So long as a disability doesn't preclude employment entirely (best judged by the person with the disability, not by someone making a preemptive judgment that someone's not capable), people with disabilities make great employees since they're resourceful, hardworking, and accustomed to thinking past the barriers to arrive at creative solutions.

Becs said...

My, my, isn't the NYT being all noble and open-minded (cough) and aware this week?

I'm, like, so inspired.

william Peace said...

Becs, The best part of the internet is that I no longer spend a dime on the New York Times. It is my favorite newspaper to dislike.

Frida, The figures associated with paralysis are about what I expected. People with a disability are the biggest untapped labor force in the country. Corporations would be wise to catch on to this fact but I doubt they will. Too much stigma is associated with disability. When you combine this with the lack of accessible mass transportation simply getting to a job often becomes too problematic or costly.