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Schools, government agencies, and sometimes, deplorably, gimp groups, are still offering the public "try on a disability" programs -- exercises in which nondisabled people are blindfolded, put into wheelchairs or given earplugs to "simulate" having a disability.

When I first wrote my article, The Wrong Message, back in 1997 for the Ragged Edge, I never imagined the stir it would cause. I am proud that the article has made people think about the harm simulations can do.

I still consider simulations an atrocity perpetuated -- mostly -- by nondisabled professionals. Disabled folks are sometimes involved though, as well.

I don't know who dreamed up the concept of "disability simulations" but they have been around for a mighty long time. My lifelong friend, Michael A. Winter, now the Director of Civil Rights for the U.S. Department of Transportation, first exposed me to the shameful practice. Michael and I were classmates at a segregated school for crips and met in 6th grade. We attended the same university. As undergrads, Michael formed a group called Wheelchair Action. When the Rehabilitation Institute at Southern Illinois University sponsored a disability simulation, Michael and members of his group stormed into the classroom and tried in vain to halt the fiasco.

Professionals who are nondisabled rarely stop to listen to the people who live with disabilities. I was proud of Michael for trying to get people to understand how destructive these simulations can be.

Nondisabled people usually come away from disability simulations

• thinking life is a tragedy for persons with disabilities,
• thanking the good Lord they are not saddled with a disability
• or falling prey to the "amazing" syndrome: "Ohhhhh just lookie at what disabled people can do! They're better than us at (getting around in the dark, popping wheelies, reading hand signs . . . )"

When I wrote "The Wrong Message," I was angry. My daughter Tara had come home from school in tears. It was Disability Simulation Day at Greenwood High. Blindfolded students were being led around by sighted students, others were bumping into walls. The students were terrified of their newly created disabilities. Some had told Tara they thought persons with disabilities had horrible lives; a few thought they might be better off dead.

School personnel knew that both Tara's parents had disabilities. She was quizzed about her home life: did she have to take care of us? was she resentful? Were we a burden to her? Did she miss out on having a childhood? Sometimes the questions were implied; at other times they were quite direct.

Her answers always warmed my heart and brought tears to my eyes. She told them she had been taught from infancy to accept people of all colors, creeds, and disabilities. She told them about going along with her parents to conferences all over the country. She told them about meeting Ed Roberts when she was little, and, later, meeting Justin Dart. She reminded them that she participated in soccer and ballet and had even attended a Neil Diamond concert.

I contacted the school's psychology teacher once and tried to get Disability Simulation Day stopped. It was a lost cause. She liked having Disability Simulation Day featured in the local newspaper, and saw no need for me or my husband -- or anyone from our local independent living center -- to come to her classroom to talk with the students.

Every March, the Indiana Governor's Planning Council for People With Disabilities does a really stupendous job providing materials for people in celebration of Disability Awareness month. Their posters are excellent, as are their public service announcements.

But their "Disability Awareness Activities" booklet, one of their handouts, is horrendous.

Here are a couple of excerpts from their publication. You decide:

All Thumbs (physical disabilities, group activity)

Materials: masking tape, raisins, nuts, pudding.

Activity: Sometimes people with physical disabilities don't have good muscle control. With masking tape, tape together the fingers of the participant's weaker hand, leaving only the thumb free. Give each participant a cup of raisins or a dish of pudding to eat using only that hand. Divide participants into pairs. Let one in each pair feed the other a dish of pudding. Trade places.

Discussion: How did you feel during these experiments? Did you find ways to overcome the problems of eating when you had less control of your hands? How does it feel to be fed by someone else?

---

"Thick Hands"

Materials: thick socks, shirts, sweaters, shoes, beads, string and ruler.

Activity: Some people have trouble with fine motor coordination. This is because their muscles are weaker, and they need more time and practice to learn how to move. To help participants understand this condition, have them put a pair of thick socks on each hand and try to tie shoes, button a shirt and string beads. Tie a ruler between the students' ankles so that their legs are stiff and apart from each other. Have them walk down the hall and back, slowly. How would they feel if people laughed or stared at them or imitated the way they walked?

Discussion: Some people who have these kinds of difficulties have mental retardation. Their muscles are weaker and their coordination is poor. But not everyone with these difficulties has mental retardation. Discuss this assumption. Can you assume that someone who can't use his or her hands has mental retardation?"

Because I have paralyzed arms, I never wear tie shoes, a simple fashion decision that compensates for my inability to tie shoes. There's nothing demeaning about it. There are many such things students could learn. The activities detailed above, though, cannot help but suggest helplessness. They evoke pity and disgust. The raisins and pudding dribble out of participants' mouths and get splattered across their clean faces. Being fed, they can't help but conclude, is a demeaning experience.

Even the exercises' titles are offensive. "All Thumbs" is a cliche -- for clumsiness. Suggesting that someone who can't use their hands has mental retardation, even if made ostensibly to prove it wrong, seems to beg the question. Would it not be more instructive to show a physics video of Stephen Hawking?

On May 5, in Joliet, IL, Joliet Central High School journalism students, turned loose on a "Disabled for a day" article in the local newspaper, had this to say: "My muscles started to hurt from sitting all day... although I was in physical pain, the worst part as knowing that many people have to endure this pain on a daily basis for the rest of their lives."

And, "I briefly felt how it would feel to be wheelchair bound for life. I couldn't keep the tears in my eyes."

And, "People with mental disabilities don't comprehend and learn like others, but they're carefree. I would love to be carefree at times."

And, "Trembling and shaking, I took my first steps blind...I felt like I was in a small, dark room... At the end of the day, I took off the blindfold. I was so grateful becasue so many people do not have the option of taking off the blindfold."

These were the honest feelings the students got from participating in an Awareness Day. Is this the message we really want to send about living with a disability?

I AM BAFFLED AS TO WHY nondisabled people see a need to simulate a disability in order to understand our situation. Across our nation in February, we celebrate Black History Month. Is it necessary for people with white skin to paint their faces black to better understand this minority? Should heterosexuals be asked to experience homosexuality so we are not homophobic?

Should I expect to be able to teach someone how to drive a car, diaper and dress a baby and make the bed with their feet as I do? Am I amazing? No; I am just living my life.

We, the people who live with disabilities, we who have so long advocated for being treated as full members of society, must reclaim our dignity and say "No!" to simulations. I long for the day when disability simulations are dumped into the trash cans of oblivion.

WHAT CAN BE DONE to help the nondisabled masses understand the disability experience?

Talk to us and ask us questions. Ask persons who have had a disability from birth (or a longtime disability) to come to your class or organization.

Read publications written BY persons with disabilities: Ragged Edge, Mouth magazine, Braille Monitor.

There are some really excellent books out there, too. Here are some of my favorites:

• Reflections from a Different Journey What Adults with Disabilities Wish All Parents Knew by Stanley D. Klein & John D. Kemp
• Make Them Go Away Clint Eastwood, Christopher Reeve & the Case Against Disability Rights by Mary Johnson
• Moving Violations : War Zones, Wheelchairs, and Declarations of Independence
• by John Hockenberry
• By Trust Betrayed by Hugh Gregory Gallagher
• FDR's Splendid Deception by Hugh Gregory Gallagher
• Don't Laugh At Me by Steve Seskin and Allen Shamblin / Illustrations by Glin Dibley. Afterword by Peter Yarrow (ages 4-8)
• No Pity by Joseph P. Shapiro
• Awakening To Disability Nothing About Us Without Us by Karen G. Stone
• Extraordinary People With Disabilities by Deborah Kent. Short essays profile 48 famous people -- John Milton, Helen Keller, FDR, Tom Cruise -- who have disabilities.

Posted August 9, 2004

Valerie Brew-Parrish is a polio survivor and a longtime disability activist. She has a M.S degree from Southern Illinois University. She writes a disability column for the Herald News.

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