One Degree of Separation: Paralysis and Spinal Cord Injury in the United States

Published: April 21, 2009  |  Source: christopherreeve.org
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onedegree_smchild_200x200According to a study initiated by the Christopher & Dana Reeve Foundation, there are nearly 1 in 50 people living with paralysis — approximately 6 million people. That’s the same number of people as the combined populations of Los Angeles, Philadelphia, and Washington, D.C. And that number is nearly 40 percent higher than previous estimates showed.

It means that we all know someone — a brother, sister, friend, neighbor, or colleague — living with paralysis. These aren’t strangers. They are only one degree of separation from all of us. But their lives are different. They live with a condition that affects their family life, their ability to work, and their capacity to enjoy even the most routine everyday activities that others take for granted. The Christopher & Dana Reeve Foundation wants to change that.

Identifing the need
In 2004, the Reeve Foundation convened more than 60 of the nation’s preeminent scientists, scholars, health advocates, and experts from the U.S. Centers for Disease Control and Prevention (CDC) and the nation’s top universities, policy centers, and nonprofit health care organizations to identify what was needed to improve the quality of life for people living with paralysis.

This Paralysis Task Force quickly discovered that there was insufficient reliable information about the prevalence of paralysis. Without that information, it would be impossible to devise new or evaluate existing policies, programs, and services for people living with paralysis. As a result, the Task Force’s first recommendation for advancing paralysis as a public issue was to build a more robust and comprehensive national knowledge base about it.

Gathering the data
Five years later, that knowledge base has been established, supported by data from a project led by researchers at the University of New Mexico’s Center for Development and Disability (CDD) from 2006 to 2008.

Researchers designed and conducted an exhaustive survey of more than 33,000 households across the country. More than 30 experts in paralysis and statistics, including those from the CDC and 14 leading universities and medical centers helped to develop and set the parameters for the study. Today, this study represents one of the largest population based samples of any disability ever conducted.

Prevalence

* Approximately 1.9% of the U.S. population, or some 5,596,000 people, reported some form of paralysis based on the functional definition used in the survey
* Approximately 0.4% of the U.S. population or some 1,275,000 people reported being paralyzed due to a spinal cord injury.

Causes of Paralysis and Spinal Cord Injury

* The leading cause of paralysis was stroke (29%), followed by spinal cord injury (23%) and multiple sclerosis (17%).
* Various types of accidents accounted for the great majority of spinal cord injuries.

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Degree of Difficulty in Moving

* 36% of those who reported being paralyzed said they had “a lot of difficulty” in moving; 29% said “some difficulty”; 17% said “a little difficulty”; and 16% said they were “completely unable to move.”
* 35% of those who reported being paralyzed due to a spinal cord injury said they had “a lot of difficulty” in moving; 29% percent said they had “some difficulty”; 20% said they had “a little difficulty”; and 13% were “completely unable” to move.

Average Age

* The average age of those who reported being paralyzed was 52.
* The average age of those who reported being paralyzed due to a spinal cord injury was 48.

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Average Length of Time Since Paralysis and Spinal Cord Injury

* The average length of time since the paralysis occurred was 14 years.
* The average length of time since the spinal cord injury occurred was 15.6 years.

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Gender

* 54% of those who reported being paralyzed were males, while 46% were females.
* 61% of those who reported being paralyzed due to a spinal cord injury were males, while 39% were females.
* Males were nearly twice as likely (1.77) to incur a spinal cord injury as females.

Paralysis and Military Service

* 67,000 (7%) of respondents who said they became paralyzed as a result of an accident or injury reported the paralyzing accident or injury occurred while serving in the military.

Ethnicity and Hispanic Identity

* Just over three-quarters of those who reported being paralyzed were White (77.8%); 17.2% were African American; 12.1% were Hispanic; 3.7% were Native American/Alaskan Native; 0.1% were two or more races; and 0.8% were other.

Paralysis is disproportionately distributed among minority communities, including African Americans and Native Americans, when compared to ethnicity data from the United States Census. Among Hispanics, however, those who reported being paralyzed represented approximately the same percentage as those who reported being Hispanic in the United States Census.

* Approximately three-quarters of those who reported being paralyzed due to a spinal cord injury are White; 15.6% are Black/African American; and 7.3% are Native American/Alaskan.

12.7% of those who reported being paralyzed due to a spinal cord injury identified themselves as Hispanic, approximately the same percentage as those who reported being Hispanic in the United States Census.

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Household income

* Household income for those who reported being paralyzed is heavily skewed towards lower income brackets and is significantly lower than household income for the country as a whole as reported by the United States Census.
* Household income for those who reported being paralyzed due to a spinal cord injury is heavily skewed towards lower income brackets and is significantly lower than household income for the country as a whole as reported by the United States Census.

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