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Human Rights Law: Never In Our Names
One in fifty Americans, or some 5.6 million people, live with paralysis.
And many of these people are very poor. Some 25% of the paralyzed, or 1.4 million people, live in households that bring in less than $10,000 per year.
The study defines paralysis as "a central nervous system disorder resulting in difficulty or inability to move the upper or lower extremities." It concluded that the number of people in America afflicted with paralysis is 40 percent higher than previously estimated.
The leading cause of paralysis is stroke (29%), followed by spinal-cord injury (23%) and multiple sclerosis (17%). The study revealed more than five times the number of people afflicted with spinal-cord injuries than previously guesstimated--nearly 1.3 million people. Accidents at work were the number one cause of spinal-cord injuries, followed by motor-vehicle accidents, and sporting or recreation accidents.
The average age of the paralyzed is 52; those with spinal-cord injuries, 48.
The Christopher and Dana Reeve Foundation, which sponsored the study, hopes that the large numbers identified in the survey will lead to increased attention to the plight of the paralyzed by government, business, and the community.
From the Foundation's website:
Here, size matters. And it matters because the size of the community dictates how much support it gets from the government, young scientist and researchers, drug companies, other foundations, and from the public at large.The study found that paralysis is disproportionately distributed among minority communities, and that household income for those with paralysis is heavily skewed towards lower-income brackets, significantly lower than household income for the country as a whole.
Here's Dr. Edwin Trevathan, Director of the CDC's National Center on Birth Defects and Developmental Disabilities:
"This study reveals important findings about the prevalence of paralysis and spinal cord injury, but we must also remember that behind each of these statistics are real people, who along with the rest of their families are facing urgent needs. This is a crucial first step to providing appropriate public health supports for this community in understanding how many people live with the condition, who they are, and what they need. At the CDC it is only when we apply our knowledge to improve the lives of people from before birth and throughout their lives that we can achieve our long-term objectives."
Several people cited in the study explained how the paralyzed are frustrated in attempting to obtain employment.
"Rehabilitation services are not adequate, in many cases," Heifitz added. Neither is access to proper equipment to help those who are paralyzed complete tasks of daily living and get to work, he said. "You are already trapped within your life," he said. "Without the help of aid you are more trapped."The Foundation recommends "5 Concrete and Actionable Steps" to address the needs of the paralyzed. These include expanding rehabilitation research, reforming health care, increasing educational and employment opportunities, and supporting allowing those afflicted with paralysis to live at home, rather than in institutions--which the United States Supreme Court has denounced as "unnecessary segregation" and "discrimination based on disability".
Breaking down barriers to employment and daily tasks such as dressing oneself, is crucial, agreed Betsy Volk of Cincinnati, now 34, who was paralyzed from the chest down in a 1996 motor vehicle accident. "There are so many barriers to employment we can't often become employed," she said.
But she overcome those barriers and works as a program analyst for the U.S. Department of Energy on diversity and civil rights issues. Still, she said, access to services often falls short, especially in the area of home services.
The study may be found in full here. The Christopher and Dana Reeve Foundation was formerly known as the American Paralysis Foundation, but changed its name when Christopher Reeve, formerly widely known as Superman, agreed to lend it his name and public support. Reeve became a quadriplegic in 1995 when thrown by a horse who refused to jump a rail. He died of cardiac arrest, at age 52, in 2004. His wife Dana perished of lung cancer, at age 44, two years later.