Disability Awareness: Beyond the Day
Sometimes national service and disability organizations use "disability awareness days" to teach service members and volunteers about the disability experience. These days may use simulations to convey what it's like to live with a disability. Participants are blindfolded, for example, or put into a wheelchair and told not to use their legs. However, many disability advocates feel that simulations are the wrong way to go.
What's wrong with simulations?
- Simulations are unrealistic. A person who's been blind for 25 years has the coping skills to handle their environment. But a sighted person who is blindfolded doesn't have those skills. This gives participants a false idea of what it's like to live with a disability. In fact, some find the simulated experience terrifying. Which leads to...
- Simulations promote pity/superperson stereotypes. Stuck in a situation they haven't learned how to handle, participants may react with amazement that people with disabilities can accomplish everyday tasks: To think you can drive without using your arms! On the other hand, simulations can evoke pity. Participants may find the experience so unpleasant that it makes them think that life with a disability is miserable. A Joliet, IL high school student reported, "At the end of the day, I took off the blindfold. I was so grateful because so many people do not have the option of taking off the blindfold."
When a person with a disability is seen as helpless, barriers go up in the minds of the people around them. People with disabilities want to be included in their communities and be treated like anyone else-- with dignity and respect. In reality, people with disabilities do everything others do, just differently.
Bottom line: National service organizations should sensitize participants to the disability experience, but there are better ways to do it.
Better ideas
The key to increasing understanding is to have people see what it's like to have a disability first-hand-- from people in the disability community, not a blindfold.
- Read books and magazines written by people with disabilities. These publications give a uniquely "for us/by us" perspective. Magazines include Ragged Edge, Mouth magazine, and Braille Monitor. For books, check out the recommended reading list at the end of this brief.
- Invite people with disabilities to talk to service groups. Ask persons who have had a disability from birth or a longtime disability to speak about their experiences. Encourage service members to ask questions.
- Include people with disabilities as service members, volunteer leaders, and employees. More likely than not, you already do! Organizations benefit from everyone's contributions. Having people with disabilities in your organization helps everyone keep the disability perspective in mind.
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Learn about disability culture. Yes, there is such a thing! The history of the disability rights movement, how people with disabilities have been viewed and treated over time, civil rights laws, heroes such as Ed Roberts, Gini Laurie (grandmother of the independent living movement), and Justin Dart (father of the Americans with Disabilities Act). The disability community has a rich and illuminating history. Some websites to start with:
- Disability Social History Project: www.disabilityhistory.org
- Society for Disability Studies: http://www.disstudies.org/
- Disability History Museum: www.disabilitymuseum.org
- Attend meetings of disability consumer groups, where people with disabilities take leadership roles. Nothing illustrates the "independent living" philosophy like a group of people who live it.
These experiences send service members the message that despite a disability, a person can cope, learn, and contribute to society. Attitude change doesn't happen overnight, but these doses of real-life experience can open doors for service members.
Ed Roberts: Father of the Independent Living Movement/Mover and Shaker
A polio survivor born in 1939, Ed Roberts used a ventilator by day and an iron lung by night. In 1961, California Vocational Rehabilitation denied him services due to the severity of his disability, which led the agency to consider him unemployable. The University of California at Berkeley hesitated to admit him for the same reason but did in 1962. He earned bachelor's and master's degrees in political science.
On campus, Roberts began to talk with other students who had disabilities, eventually organizing them into a disability rights group called "The Rolling Quads." Roberts couched their demands as a civil rights struggle, not a question of health care. In 1970, he established an on-campus center for people with disabilities. He then shifted his focus to the surrounding city, helping to establish the Berkeley Center for Independent Living. This spawned a movement of independent living centers, which share the core values of advocacy, independent living skills training, information and referral, and peer counseling. Today there are nearly 400 independent living centers in the U.S.
Ironically, in 1975 Roberts became the director of the same agency that said that he was too severely disabled to be educated. He led the agency for eight years, then co-founded the World Institute on Disability think tank. Roberts was also a MacArthur Fellow, an avid traveler, and a father. His story illustrates the need for people with disabilities to direct their own futures. And it shows that no one should be underestimated or dismissed out of hand.
Sidebar adapted in part from the websites of the Impact (IL) and Berkeley (CA) centers for independent living.
Suggested reading:
- By Trust Betrayed and FDR's Splendid Deception, Hugh Gregory Gallagher
- Moving Violations: War Zones, Wheelchairs, and Declarations of Independence, John Hockenberry
- Make Them Go Away: Clint Eastwood, Christopher Reeve, and the Case Against Disability Rights, Mary Johnson
- Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew, Stanley D. Klein & John D. Kemp
- Extraordinary People with Disabilities, Deborah Kent
- Ragged Edge Magazine, www.ragged-edge-mag.com
- Don't Laugh at Me (ages 4-8), Steve Seskin and Allen Shamblin/illustrations by Glin Dibley, afterword by Peter Yarrow
- No Pity, Joseph P. Shapiro
- Awakening to Disability: Nothing About Us Without Us, Karen G. Stone
Valerie Brew-Parrish is a polio survivor and a longtime disability activist. She has a M.S. degree from Southern Illinois University and writes a disability column for the Herald News. This brief was adapted by Danielle Dreilinger from an NSIP presentation by Valerie and from her article "The Wrong Message-- Still," published in Ragged Edge, 2004.
©The National Service Inclusion Project is a cooperative agreement (#01CAM0016) between the Corporation for National and Community Service and the Institute for Community Inclusion at UMass Boston in collaboration with the Association of University Centers on Disabilities.