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I am not my disability: The words we choose to describe a person take on a life of their own. Choose People First.STORY BY

Rob Cahill

The authors of the English language didn’t do any favors for people with disabilities when they coined a series of stigmatizing terms like “handicap” and “cripple” to describe people with differences in their bodily functions and abilities.

The term “handicap” has been linked to both an Old English bartering game in which the loser was left with his “hand in his cap” and to a person with a disability begging with “cap in hand.” The word “cripple” refers to a lame animal or person.

Deemed offensive, both terms are avoided by most journalists but persist in everyday conversation, which stereotypes the person with a disability as helpless and in need of pity or compassion. “Handicapped” is no longer used in federal legislation.

‘ The difference between the right word and the almost right word is the difference between lightning and the lightning bug.’

— Mark Twain

“Words affect attitudes,” says disability rights pioneer Lex Frieden, who joined the faculty of The University of Texas Health Science Center at Houston in 2007. “If people use misinformed language, it perpetuates the negative stereotypes and perceptions about groups of people.”

Frieden’s primary appointment is at The University of Texas School of Health Information Sciences at Houston, where he directs the school’s Laboratory for Adaptive Technologies. He also serves at the Independent Living Research Utilization (ILRU) program at Memorial Hermann | TIRR, Baylor College of Medicine and the UT Medical School at Houston.

“A person is a person regardless of whether he or she has a disability,” Frieden says. “It is preferable to identify someone as a person with a disability rather than as a cripple, an invalid or a handicapped person.” Frieden uses a wheelchair after being injured in a traffic accident while in college.

Poster reprinted with permission from Human Policy Press.

Half of us to experience disability

There are 54 million Americans with disabilities and the number most likely will increase as a result of life-prolonging therapeutic breakthroughs, the obesity crisis, and especially, the aging of Baby Boomers.  “As of the year 2010, we will see a glut of Baby Boomers hit retirement,” says Frieden. “So, as of January 1, for the next 10 years, 10,000 people a day will hit age 65. Right now, half of all folks over 65 have disabilities,” Frieden says.

A more sobering way to say it: If you’re 30 years old, you have a 1 in 2 chance of experiencing disability three months or more sometime in your life before the age of 65.

Some organizations that raise money to help people with disabilities are to blame for some disability stereotyping. “Pity was used as a strategy to raise funds during telethons,” Frieden says. “It led employers to believe that people with disabilities couldn’t work.”

‘If you’re 30 years old, you have a 1 in 2 chance of experiencing disability three months or more sometime in your life before the age of 65.’

Frieden and other disability rights advocates are promoting “People First Language”— respectful and accurate terminology for people with disabilities.

Author Kathie Snow has compiled a list of the dos’ and don’ts in an article titled “To ensure Inclusion, Freedom and Respect for all, we must use People First Language,” which is online at http://ftp.disabilityisnatural.com/documents/PFL8.pdf  *

Here are examples.

Say: Instead of:
People with disabilities. The handicapped or disabled.
Frank uses a wheelchair. He is confined to a wheelchair.
Paul has a cognitive disability (diagnosis). He’s mentally retarded.
Bob has a physical disability. He is a quadriplegic/is crippled.

 

“A person’s disability is a descriptor just like color might be a descriptor of race,” Frieden says. “Just because a person has vision issues doesn’t mean he or she is blind. Likewise, a person who may be hard of hearing isn’t necessarily deaf.”

Political buttons and bumper sticker. (Courtesy of the Smithsonian’s National Museum of American History, Division of Medicine and Science)
T-shirts from disability rights movement. (Courtesy of the Smithsonian’s National Museum of American History, Division of Medicine and Science)

The American Medical Association defines disability as “an alteration of an individual’s capacity to meet personal, social or occupational demands because of an impairment.”

War wounds brought shift in attitudes

Injured soldiers from World War II and the Vietnam War played a key role in advancing the rights of people with disabilities, Frieden says. “They didn’t consider themselves invalids or cripples and weren’t about to let someone tell them what they could or couldn’t do.”

Other events influencing a change in attitudes toward people with disabilities in the second half of the 20th century included the independent living movement, the self-advocacy People First movement, self-help initiatives and the Civil Rights Movement.

The disability rights movement led to the passage of the 1990 Americans with Disabilities Act. It prohibits discrimination against people with disabilities and guarantees equal opportunities for individuals with disabilities in employment, transportation, public accommodations, state and local government services and telecommunications.

Frieden’s adaptive technologies lab is working on innovative ways to help people with disabilities at work and at home. Projects include the use of personal digital assistants (PDAs) to help people with Alzheimer’s disease remember their daily routines, as well as the development of assistive robots that can be operated with a specially designed exoskeleton and perform tasks such as vacuuming.

And, there’s more to come.

*Copyright 2005-2008 Kathie Snow, used with permission. (Contact kathie@disabilityisnatural.com for permission to reprint.)

Reader Comments:

Comments do not necessarily reflect the opinion or approval of HealthLeader or The University of Texas Health Science Center at Houston.

Send us your comments.

reader commentpencil M. Silver writes:
Date: March 31, 2008

Nice to see disability talked about sensibly: my paraplegic wife, who isn't too sensitive a flower, bristles at the term 'wheelchair bound', funny to see you using it on your preliminary intro.

 

reader commentpencil J.P. writes:
Date: March 28, 2008

Are you kidding me!  We are politically correcting ourselves to death.  Have you not heard the phrase “Sticks and stones may break my bones but words will never hurt me”.  I grew up with a handicap; I can tell you what being called names is all about, and it started right in my own home. It did absolutely no damage to me as a person. If fact, it made me the strong and accretive person I am today. 

If harsh words damage people, why do our armed forces use them to train our soldiers?

 

reader commentpencil D. Norris writes:
Date: March 27, 2008

Rob and Karen,

I want to compliment you on the story “The Language of Disability”. I very much enjoyed reading it and I appreciate the excellent resources, especially the “People First Language” document.  

Thanks again for all you do to keep staff members updated and informed on health topics.

 

Last Updated: 3-28-2008