"Nobody can inspire
who does not have deep convictions;
they are the results, but also
the feeders of the spirit."
Robert Ulich
THIS PAGE is for
words of deep convictions
********
regarding disability rights advocacy.........
While in the future, this space will be reserved for thoughts and ideas regarding disability-rights advocacy, I thought I would "start" by introducing myself, and why I personally believe such a forum as this is important.
Although some people may heatedly debate whether or not they 'have' a disability, I, myself, have found great peace of mind in simply knowing 'where I fit in'. Being affected by something as rare and unusual as Moebius syndrome (a congenital oculofacial paralysis - unable to smile, frown, wink, or show any of the 'typical' facial expressions), I knew that, for a very significant part of my life, I didn't 'fit in' to either the 'normal' people (for everyone seemed to smile, even those that are blind, in wheelchairs, etc.) or the 'handicapped' people (for I thought 'handicapped' could only mean those stereotypic conditions related to being blind, deaf or in a wheelchair).
So I, like so many others, became a VERY lonely group of one. "Back then", no resources of any kind were truly available - my family, like so many others, - had to cope alone. I know that I could not convey to anyone who has never experienced such 'aloneness' exactly how this feels.... an isolation made worse by the inability to find another 'soulmate' - one whose experiences or condition are similar.
Experiences which become understandible when shared, such as the painful feeling of ugly new orthopedic shoes, the embarrassment of being 'the only one'. and most especially ....... the teasing and social isolation .... gain astronomical potency when left to fester 'forever' within the soul of a child. These experiences take on even more meaning when well-meaning or condescending adults say 'you shouldn't FEEL that way!" ... "you're just feeling SORRY for yourself!..... Since GROWNUPS are supposed to 'know more' than a child, such messages only serve to eradicate any sense of self-esteem or self-understanding. The physical realities of a disability pale in measure when compared to the social or psychological messages often implied to a child who wants only to be seen as "OK"....... a child who wants to be seen as a child FIRST.
For many adults who are affected by rare disorders, diagnoses often took years, decades....or an entire lifetime. During all those years of ignorance, each adult was rendered 'powerless' due to the lack of information and support. One often coped by refusing to acknowledge that such a condition had any effect upon one's self. Why begin to look for information 'today'.... when nothing has been available for the past lifetime?
In finally getting the diagnosis of "Moebius syndrome", I was able to learn that others, indeed, have looked the same, and probably had experienced many of the same trials I had. I finally knew where I 'fit in'.... and such knowledge was truly empowering! In the twenty-five years since I learned (at age 22) what I was 'born with', I have sensed great internal 'power' as a result of KNOWLEDGE, INFORMATION, RESOURCES, .... AND FINDING OTHERS SIMILARLY AFFECTED.
I would only hope that, through these and other resources available both on and offline, those affected by disabilities may truly see the 'complete picture' ...... the inter-relationship between PARENTS, PEOPLE, AND PROFESSIONALS.... No one or two groups can singlehandedly understand, support and educate all others without the third group.
It might be a harder sell than the toy company thinks. "The name makes me want to gag," said Leslie Heller, who has cerebral palsy. Nadina LaSpina, who had polio, said, "It shows they can make money off of us."
"We'll see where it's marketed," said Deborah Yanagisawa, who is
blind.
"It will be in the hospital gift shops."
The comments signify a new militant attitude among many of the disabled, sometimes including a willingness -- even eagerness -- to bite the hands that would feed them. After decades of fighting for access to everything from colleges to buses, a battle that culminated in 1990 with the passage of the landmark Americans with Disabilities Act, increasing numbers of people with disabilities are forcefully putting forward ideas that might startle many Americans.
Not only do they criticize the Franklin Delano Roosevelt Memorial for omitting a wheelchair, they point out that the Braille is too high up and too large to read. Far from applauding the customers in wheelchairs shown in television commercials, they grumble that there are no disabled sales clerks. They castigate Christopher Reeve for his campaign for a cure for spinal injury, saying it is unrealistic and offensive to people who have learned to live with their disabilities and indeed thrive on them. They demonstrate against giving doctors the right to assist in suicide, calling that a slippery slope; they grimly point out that Hitler killed 200,000 disabled people before he got around to other groups.
Perhaps most surprising to conventional thinking is that many say they would reject being cured even if it were possible, explaining that they have a condition, not an illness. "I would not trade my disability for anything," Ms. LaSpina declared. Rather, she said, it is up to the world to adapt to her needs, a process spurred by legislation and regulation and accelerated by technology -- from power wheelchairs to voice-activated computers.
"We will not change to fit the mold," she added. "Instead, we will destroy the mold and change the world to make sure there is room for everyone."
Disability, of course, is in the eye of the beholder, and must be defined as continuous. A person who uses glasses -- arguably "spectacle bound" (as in the hated phrase "wheelchair bound") -- would not normally be included. The disabled are the only minority group anybody can join at any time. This said, the average number of Americans with physical disabilities is 49 million, including many within the growing ranks of the elderly.
Ms. LaSpina, who has a doctorate in Italian literature, teaches a course called "Disability Culture" at the New School for Social Research in New York City; Ms. Heller and Ms. Yanagisawa are two of her students. They are united in the conviction that a new culture has developed among the disabled, much like that of deaf people, who have long had their own language -- and like that of homosexuals.
Hardly self-pitying, disability culture celebrates disability and finds expression in literature, poetry, dance and, most pointedly, in a slashingly dark humor. (An example: non-disabled people are bowling pins because they are so easy for wheelchair riders to knock over.)
Poetry by Cheryl Marie Wade begins by saying she is "not one of the physically challenged." It continues: "I'm a sock in the eye with a gnarled fist, I'm a French kiss with a cleft tongue."
Disabilities are central to such visions. "We are proud of ourselves as people with disabilities," said Steven E. Brown, co-founder of the Institute on Disability Culture in Las Cruces, N.M. "We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities."
The consciousness shift can be traced back to 1962 when Edward V. Roberts, who became a quadriplegic after contracting polio, was admitted to the University of California. He had to sue to do it, just as in the same semester James Meredith sued to become the first black person to gain admission to the University of Mississippi.
Roberts, a quadriplegic who attended class using a respirator, was quickly joined by other disabled students, who called themselves "the Rolling Quads."
Roberts went on to set up a center at Berkeley to enable students, and then the larger community in the Bay Area, to help the disabled find homes, jobs and services. He died in 1995. His example led to 300 such centers being established around the United States. These federally financed centers have been pivotal in allowing more disabled people to participate in life.
Many come together in groups like Disabled in Action, which has fought for elevators in subway stations and against telethons to aid the disabled, which it regards as hopelessly paternalistic. The Disabled in Action Singers perform such numbers as "Let the Children Stare" to convey the message that no good -- certainly not politeness -- is served by ignoring disabilities. For the disabled themselves, the new advocacy associations allow mutual affirmation to replace individual denial.
"When I was growing up, I was terrified of walking into a room of people with disabilities and admit I was one of them," Ms. Heller said. "Now I just love being in a community of people with disabilities."
It is not always easy. Many disabled people still don't get around much, and those who do often move slowly. Some are tired, physically and emotionally. But many say it is worth it because of the qualities they share. Carol Gill, a psychologist who was one of the first to use the term disability culture and who is a quadriplegic, says the disabled share a number of core values: tolerance for others' differences, highly developed skills at managing multiple problems and dark humor, among others.
Most important, said Ms. Gill, "Even if we have a minor disability, we're still different -- because society won't let us forget that we're different."
For some disabled people, these differences are the opposite of off-putting. "I came to see disabled people as beautiful," said Danny Robert, who has multiple sclerosis. "Particularly people on respirators, people in wheelchairs, people who spasm a lot, people who drool." Robert, formerly a movie prop man, became a disabled-rights activist. "Once I stopped being what I had been, I needed to be part of a community," he said. "I love these people."
Sherry Lampert pretty much summarizes the changing, broadening horizons of the disabled. She is 49 years old and lives on the ground floor of a Coney Island housing project. She has cerebral palsy and needs round-the-clock attendants. As a teen-ager, her sister demanded that she hide in the back room when dates visited. Though her intelligence is sharp, her parents put her in a hospital ward for the retarded, and she tried to kill herself at 16. "I felt like I wasn't part of the human race," she said.
These days, Ms. Lampert has become a fervent participant in demonstrations against allowing assisted suicide. A bumper sticker on her wheelchair reads: "Not Dead Yet." Her views on Reeve are succinct: "I feel sorry for him because he wants to be cured."
DEAR FOLKS:
My name is Robin Coupland Jutzi; I am an English professor at Nipissing University, in North Bay, Ontario, Canada. I am currently helping the Young People's Press organize a disabilities section.
Young People's Press is a Canadian "press bureau" to give young persons in Canada a chance to have access to the mainstream press: to give them a chance to present their ideas, in their own way, on their own terms without being controlled or interpreted through the eyes of "adult" journalists. Our goal is to provide access to the media for a group of people who have been prevented from participating in public discourse to discuss their concerns and to share their perspectives on the world. Although the Young People's Press has only been in operation for a year, we have already published 200 stories in over 80 daily newspapers throughout Canada, including all the major papers, such as the Toronto Star, the Globe and Mail, the Vancouver Province, the Edmonton Journal and the Montreal Gazette.
As someone who has lived with a serious medical disability (cystic fibrosis) for 37 years, I can vouch that no one has been left out of the mainstream than those of us who live with disabilities. Aside from all the difficulties of becoming productive adults in an increasingly competitive, complex and dehumanizing society, we have to deal with all the added problems of matching our employment to our "handicap", dating and marriage concerns, social integration, family stresses, issues of "wholeness" and so forth. Moreover, since the mainstream world (and media) does not have to deal with our "private" concerns, we feel isolated because no one "out there" knows what it is like to struggle with what we through on a daily basis. Someone from my disability's list eloquently voiced this concern: "It is difficult to talk about myself and CF. I usually keep to myself because I feel different than my peers."
Part of the goal of this project is to give those of us with disabilities a chance to share our perspectives, our vision of the world to the mainstream society. Through promoting understanding, we hope to feel more comfortable "being ourselves" in the world around us.
This is why the Young People's Press has started a special disabilities section: to give us a chance to tell our stories: to say what it is like growing up with a disability, the special problems we face, the daily triumphs we celebrate as we go through each day. Partly, it is a chance to see our own perspectives and concerns represented in the mainstream media. Partly, it is a chance to do public education in the mainstream press, to tell others what it is like to live, struggle and triumph with living with a disability.
We are looking for stories by or about Canadian young persons (16-30) who are living with a disability. These stories can describe the daily tasks of living and the complications that one's own particular disability poses. Or one can talk about relationships with parents, siblings, friends, romantic partners and spouses and how the relationship has been affected and enriched by living with a disability. Or one can talk about school experiences, vocational struggles and workplace issues and how one has coped with the complications of making a living while living with a disability. Or one could share experiences of misunderstandings, prejudice and social barriers to trying to live a full life with one' s disability. (The international e-mail group for my disability has a special section called "stupid comments"!) Finally, I would hope that people are free to share their dreams. One of the hardest thing for people with disabilities to discuss is their dreams: their hopes for careers, families, potential medical breakthoughs...But we can't let our particular disability rob us of our futures; we need to share our hopes with each other and the rest of the world! This can be your forum share your dreams.
Any stories or leads received will be responded to. Some stories will be sent, perhaps with editing, to Young People's Press media outlets in newspapers throughout Canada. Other stories may be included in articles which speak about concerns which are common to many disabilities or are specific to any particular disability. (Workplace. Schools. How to tell a friend you have an invisible disability. Dating...) Some may focus on issues; others will focus on outstanding individuals who have triumphed and succeeded in making their way in the world. Others can focus on the dreams of young persons with disabilities.
Sometimes, you may say something that we may want to do a story on. We may ask you to write a story yourself. Or we may email you back and arrange an interview by email or phone, or have one of our young reporters meet with you for a face-to-face interview. Every contribution will be responded to with absolute respect and, if you wish it, anonymity.
If you want to write a story, or want to be interviewed for a story, or know of someone who would be an interesting topic of a story, please contact us via email. We look forward to hearing from you!
Write an anecdote about: education? career planning? jobs? family? dating? marriage? stupid comments? (doctors, teachers, any-old-idiots?) Fears? Frustrations? dreams? --- Email them to me and I will archive them and maybe use them.
Willing to be interviewed (mention topics) by email or by phone? email me.
Some of the topics we will be focusing on in the immediate future:
--Career planning\ jobs
--Dating (fears, prejudices, joys)
--Stupid comments, prejudice
Again, thanks to any and all who are willing to help out in this project!
--Robin Jutzi, PhD
Nippising University
&
Disabilities Editor, Young People's Press
I can be reached at the following email address:
ROBINCJ@EINSTEIN.UNIPISSING.CA