Thursday, October 25, 2007

Disability Simulations Need to be Abolished

My friend, Valerie Brew-Parrish is a terrific writer. She wrote this column that appeared today in the Joliet, IL newspaper, The Herald News, where she has a regular column. It's about Disability Awareness Day, which i guess is today. She graciously allowed me to publish it here. Thanks Val.

Hey, Hey, Hey, it’s Disability Awareness Day! By golly, everyone gets a chance to see what it’s really like to have a disability. Yank out those blindfolds, grab cotton to stuff in your ears, and plop yourself in a wheelchair to navigate around an obstacle course. . .These are the words I wrote back in 1997. Nothing that I have published before or since will ever have the impact that my column for the Ragged Edge on disability simulations has had on humanity.

I updated the column in 2004 once again for the same publication. Never in my wildest imaginings did I ever expect the overwhelming response I received from attacking disability simulations. Both columns have been translated into several languages; they are chapters in university textbooks, U.S. Army Training Manuals, Church training manuals, etc. This column sparked a revolution in the disability community. The message world wide from disability activists thundered, NO MORE SIMULATIONS! And, still the debacle continues and is even sometimes sanctioned by ill-informed people with disabilities.

We have all seen the advertisements of prominent community leaders pretending they have a disability to promote some favorite cause. Yet, it would be inconceivable and insulting for these leaders to simulate a specific minority group to get a better understanding of the issues. Why are simulations so destructive?

Nondisabled people come away from these simulations thinking that life is a tragedy for people with disabilities. A young high school student made these comments after spending a day in a wheelchair: “I briefly felt how it would feel to be wheelchair bound for life. I couldn’t keep the tears from my eyes.”

A college student who participated in a disability simulation and had his arms pinned behind his back told me, “I’d rather be dead than have to live like you do.” He was being honest. However, he did not have the coping strategies I employ. I could not teach this student in a simulation how to drive with his feet, diaper a child, make a bed, and cope with life. I am not amazing. I, like other people with life long disabilities, know how to successfully and happily live with a disability.

Simulations promote excessive pity and fear of disability. The student who was blindfolded told my daughter he was bouncing into walls and was afraid to take a step. After this simulation, how likely would it be for this person in the future to employ a blind person? My husband, blind from birth, commuted to his job from Indianapolis to Chicago.

Thankfully, my original columns on simulations spawned an excellent book by a true disability activist, Mary Johnson, editor of the Ragged Edge Online. The book is called: Disabilty Awareness-Do it Right! People with disabilities need to be treated with dignity. When disability simulations become extinct, perhaps the flood of pity will dry up and be replaced with respect.

Valerie Brew-Parrish: Val4info@Comcast.net

Sunday, October 21, 2007

The Parenting Tightrope

He said the most remarkable thing.

He is Daniel Handler, who writes under the pseudonym, Lemony Snicket. He is the author of the 13-part “Series of Unfortunate Events,” tales that chronicle the lives of the Baudelaire orphans, Klaus, Violet, and Sunny.

Snicket is their uncle and narrator of all the stories; he is a scoundrel who wants only to separate the children from their inheritance. As the tales begin, he encourages us to do something better with our time; surely we can do better than to sit and read the sad tale he is about to tell. The books are wildly popular. Paramount Pictures made several of the stories into an Academy Award winning movie, “Lemony Snicket and A Series of Unfortunate Events.”

I was listening to someone interview Handler on public radio. The interviewer asked, “why orphans?” She wanted to know why children’s authors write so frequently about orphans. Handler responded, almost casually, “Because to do something extraordinary, one must be unsupervised.”

It immediately struck a chord. Instead of thinking about orphans, I wondered if the same were true for children with disabilities. Must they be unsupervised to be amazing? Children with disabilities are rarely unsupervised. Do we unwittingly, however lovingly, prevent them from doing something extraordinary?

The rules of parenting require us to be the spoilsport. It is our job to ensure our children are safe; no venturing into experiences we know they are not yet ready for. We monitor their television watching, choose bedtimes, encourage the consumption of vegetables, admonish impulsiveness, and promote their general safety.

When I think about my own childhood, I had a lot of unsupervised time. Farm kids usually do. I spent hours under the highway bridge pretending, roaming the woods and climbing the rickety billboard sign near our house.

When I visited my cousins in Chicago, the city belonged to us. We took buses downtown. We would pretend to be faith healers in Buckingham Fountain and then run off giggling when an adult would disgustingly admonish or look at us. We hung out in the bathroom at Carson-Pire'-Scott and spoke gibberish when patrons came in; we were certain they would believe we were immigrants from some exotic land. One of our favorite activities was going to an exotic land right there in Chicago -- Old Town. We sat for hours watching the hippies, just a few years older than us, with awe and wonderment.

If our parents knew what we were doing, they surely would have jerked our collars back to the safeness of our backyard. Yet, out side of our parent’s eye-shot, we began to define ourselves, not as our parent’s child, but people in our own right. Sure, much of what we did was childish, but we were experimenting… trying on different behaviors to see how they fit. We began experiencing the world. We got into jams and had to use our own wits to get out of them. That was extraordinary and it could not have happened under my parents’ watchful eyes.

Tom Sullivan, author of “If You Could See What I Hear,” was a rambunctious young kid who was blind from birth. As a young college student, his buddies taught him to drive. One night a cop stopped them for two violations: rolling through a stop sign and driving without lights. Tom’s explanation was simple, “Headlights; they don’t help me much. And I’m the only sober person in the car; surely you didn’t want one of them to drive, did you?”

His parents must have died a thousand deaths when they heard that story. Yet Tom went on to become a news correspondent for Good Morning America, enjoyed skydiving, and appeared in numerous television and movies including Airplane ’77. He also single-handedly saved his drowning toddler’s life after the baby accidentally fell into their pool.

We parents walk a tightrope. With heart and soulfulness, we work to raise good safe citizens. However, we have to find a way to balance our need to protect and a child’s need to be free. We have to trust our children, and give them space to be out in society, to experiment, to succeed and to fail. They need it to become the most extraordinary people they can be.

Thursday, October 11, 2007

One More Time... for Katie

Katie Thorpe is a young woman in the UK who has cerebral palsy. Her mother wants her uterus removed to save her the "pain of menstruation.” Many people have blogged about her in the last few weeks as the powers-that-be consider the request.

I wanted to write about her too. But I had insecurities about it. Was there more to say? Did I have anything new to contribute to the discussion?

A Kick in the Seat

I received a forwarded email from a friend yesterday. The original email was a comment by a young woman with a disability who is the vice president of a national youth leadership group. She wondered aloud why so few people leave comments after the online blogs/position papers about Katie. Were there more people like me, I wondered, who feel unsure about their ability to add anything to the conversation?

I've now decided that, if ever there was ever a story that needs repeated attention, that needs to be looked at from all angles, hashed and re-hashed again, it is this one. This story screams out for the 24/7 cable news network version of "Brittney's not wearing panties" attention. Yet media outlets remain silent; and as Stacey points out so, pretty much, have we as a community.

Upon introspection, I had not written because the story left me absolutely stunned. I first heard about mutilations like this when the Ashley X story broke. Since then I learned that other children preceded Ashley, though who really knows how many. When what happened to Ashley became public, it sparked international debate.

I assumed we learned from that tragedy; that parents, doctors and ethicists, struggled just as the disability community did, and they realized that what happened to Ashley is unacceptable, no criminal. I assumed that while it was too late for Ashley X, our society learned from this horrid injustice and it would never happen again. The fact it is indeed happening again overwhelmed and depressed me. I felt defeated. However, I must not let that stop me from fighting against it.

This is also a story about Katie's parents, and I too, am a parent of a child with disabilities. I dislike admitting any association with their behavior. Look, we all know it is not easy being a parent. It is harder if your child has a disability. Then our health care, educational, and general social systems create yet more obstacles.

Katie's parents are succumbing to the pressure of it, rather than fighting for Katie's full birthright as a human being. This is a story about a young teen with disabilities that faces an assault from the very people who should be fighting the hardest for her rights - her parents. That is hard for me to accept. She should not have any surgery without sound medical evidence of pathology. It is the least any of us should expect. Monthly periods do not meet that burden of proof.

I try to avoid sarcasm when I write. Nevertheless, I do wonder, if anyone has come forward to suggest that young boys should be castrated before puberty to avoid the pain and embarrassment of ejaculation and wet dreams.

I also try to avoid making Nazi concentration camp analogies. Almost nothing matches the holocaust's inhumanity. However, the utter disregard for human rights that people with disabilities face today is closing in on it.

If you have a severe disability, the medical establishment considers consuming food and water, "extraordinary" treatment. New "cost savings" medical plans encourage doctors to "assist" people with disabilities right out of this life. A doctor can blatantly give massive doses of medication to "hasten death" so he can harvest the organs from a person with a disability, and not be charged with murder. And, little girls can have their uteruses and other body parts removed, because it makes it easier to care for them.

"One more time for the cause..."

An old friend used to use the above phrase often. It usually preceded someone asking if she really thought she could be a good parent as they watched her, with her two crutches, playing with her children; or overhread people wonder loudly if she should be walked without a companion; or any one of a hundred other societal face-slaps she had to tolerate. Each time she would sigh, throw her shoulders back, smile, and say "One more time for the cause." She would immediately jump into a friendly conversation with them.

She never wavered in her belief she could change the hearts and minds of others about people with disabilities’ civil rights. Even when she was in a crappy mood, or afraid, or bone-tired, she would muster up the strength to inform, educate and move a bigot a little closer to understanding that "we" are just like "them".

So, I think Stacey concern is valid; and as individual members of a minority group we should grapple with it. Personally, I am a little chastened by it; and that is a good thing. I still have much to learn.

If not us, who?

We do need to write those letters. See F.R.I.D.A. for the names of the decision makers in Katie's case. While you are at it, share them with your legislators. (I've sent mine.) Add your comments to support to those who wrote about it on their blogs. Write a letter to the editor at your local paper. Ask your own doctor how he would handle the situation. Hang a sign in your window; or find another way to bring this issue forward.

One more time, for the cause of justice; one more time for Katie.

Tuesday, October 9, 2007

Deadly Double Standards

I previously wrote about Dylan Walborn's death. He is a little boy with a disability whose parents starved him to death with the permission of medical ethicists. The Denver Post chronicled entire 23-day ordeal; a reporter and photographer came by frequently to keep a record of the event and snap a few pictures.

Then the reporter wrote a long expose documenting every horrible day Dylan was denied food. The paper created two multimedia presentations and published pictures. The article really seemed to justify the parents' actions. The paper continues justify their decision to cover the story the way they did.

Yet on September 1, 2007, the Denver Post wrote an editorial about another death by starvation of another child, Chandler Grafner by his guardians. Only now they are outraged by it:

The gut-wrenching starvation death of 7-year-old Chandler Grafner needs to serve as a
wakeup call to all schools, teachers and social service agencies in Colorado.

The public agencies created to protect our most vulnerable citizens failed him; in three
different counties.

In the end, a little boy slowly wasted away of hunger and neglect. He died on May 6 after
being imprisoned in a tiny closet by his guardians.

So, what's the difference? Why is one child's death sanctioned by angels and the other a criminal act? Did the newspaper come out and say they were wrong about covering Dylan's death they way they did? No.

The difference is disability. It's a tragedy when a child without disabilities is denied food and dies at the hand of a parent/guardian; but, it's a sorrowful, yet understandable when a child with a disability parents deny him food and he dies as a result.

Unfortunately, the Denver Post shares its duplicity with the general public.

Here's what ShanBanan wrote after Dylan Walborn's story was in the paper.

God bless your family. This must have been a very hard decision to make. Dylan is at peace
running around with God and other children in heaven. I pray that you continue to have
peace with your decision and that you know how much God loves you all.

Here's what "Stephanie P" wrote online after reading the editorial about Chandler's death:

...How many more horrific, heartbreaking stories like this have to happen before we
commit the resources needed to reduce case worker loads and improve training and
practices? We must never forget this beautiful little boy and MUST act now to prevent this
from happening again...It should be NEVER AGAIN!

Both children were of equal value. Unfortunately, both deaths demonstrate another sickening example how callous and dismissive our society is about equality and even the most basic civil liberties for people with disabilities. Until we figure out how to stop this double standard, we will never be free.

Monday, October 8, 2007

Seven Straight Nights for Equal Rights

From now until October 13, 2007, straight people across the nation will "come out" as supporters of equal rights for the gay and lesbian community in America.

All across the country straight folks will hold overnight vigils to show support for their gay and lesbian friends and neighbors. This is a chance for heterosexual men and women to show solidarity for the cause of justice for all.

There are about 30 vigils planned around the US. To kick off the events yesterday in Atlanta, Isaac Farris Jr. -- nephew of Dr. Martin Luther King Jr. -- addressed the vigil supporters for equality for lesbian, gay, bisexual, and transgendered and questioning (LGBTQ) Americans.

Tell your elected officials and local media, “equality is not a gay issue, not an urban elite issue, not an East Coast or a West Coast issue -- it's an American issue.”

You can join this movement. Visit http://www.sevenstraightnights.org/ to find a vigil near you. In Illinois, my home state, Champaign is holding a vigil. Plan to attend, and contact the organizers to find out how you can help.

I also encourage you to blog about it. Let your voice be heard. Stand strong with the LGBTQ community!

To become a sponsor of Seven Straight Nights, contact Jodie Eldridge, jodie@atticuscircle.org, Phone: 512.450.5188

By the way… Dennis Kucinich is the only candidate who unequivocally supports full marriage equality.