TYPOGRAPHY BY STATISTICIAN W. J. YOUDEN IN A 1956 TRIBUTE TO FRANCIS GALTON'S INVENTION, THE NORMAL CURVE. FROM STATISTICS ON THE TABLE BY STEPHEN M. STIGLER, HARVARD U. PRESS, 2000.
IT'S OUR TURN to stare at normality. First, who invented 'normal'? Now we know it and you will too: it was the father of Eugenics. Seeing his patrician pals as the norm and our kind as dangerously off spec, he created normality to make us extinct. Yet science historians rank him with Isaac Newton and Copernicus for inventing the norm. No kidding. So normality is not unquestionable. Turns out it's not even related to math. See PAGE 12.
THE FINESSE HOLLYWOOD GENIUS OF ANTONIO ADAMS, page 14.
THE CONFESSIONS OF A FORMER SOCIAL WORKER, page 20.
EUGENE MARCUS IS ALMOST BECOMING A PERSON, page 26.
NOT EVEN NICE, page 30.
INVACARE CUSTOMERS UP IN SMOKE
|ILLUSTRATION BY B. FAW|
|by Larry Biondi|
Theater managers like to keep out wheelchair users, saying they're fire hazards if they sit in aisles. Now Invacare power chairs have proven to be exactly that, not to the public but to their users. Five Invacare customers have died so far while others have lost their homes and suffered bad burns.
The world's largest manufacturer of motorized wheelchairs, Invacare, has recalled all its power chairs manufactured between 1985 and 2000. It knew of the hazards in 1993 but didn't issue the recall until five deaths and thirty injuries were reported. Juries have found the company guilty of gross negligence. The company settled a lawsuit last year for more than $7 million after battery recharger wiring on one of its chairs sparked a fire which badly burned a 65-year-old woman. The company posted sales of more than $1 billion last year.
One chair reportedly "burnt like a blowtorch" while its owner was seated in it.
Mary Beth Gahan, a Chicago disability rights advocate, was one of thousands affected by the recall. She had to trade in her $9,500 Action Storm chair. "I don't think there's been enough communication about it," she said. "If people had known, maybe they wouldn't have died."
Douglas Clark, attorney at Mesch, Clark & Rotschild of Tucson, Ariz., a law firm that settled another customer's case in August, said, "Many people still don't know about the risk. They should have it on national TV."
The problem is in the battery charger wiring harness. None of the chairs appeared to have a problem before they set occupants and homes afire. Move over, Firestone.
VISITABILITY GOES NATIONAL
"It defies logic," U.S. Representative Jan Schakowsky (D-IL) says, "to build new homes that block people out when it's so easy and cheap to build new homes that let people in."
At a national conference of disability housing advocates in Chicago on September 14, Schakowsky announced she will introduce legislation requiring all new homes built with federal funds or loans to be "visitable." Named by its originator, Eleanor Smith, visitability includes three basic access features: one no-step entrance, one accessible first-floor bathroom, and 32" doorways throughout the home, so guests with disabilities can visit and so that a homeowner who becomes disabled won't have to rebuild or move.
Home Builders Associations, both local and national, fight the idea as "too costly." Smith and others have
KAREN TAMLEY AND BETO BARRERA OF ACCESS LIVING, CHICAGO, WHICH HOSTED THE CONFERENCE, SEEN HERE IN A FILE PHOTO BY TOM OLIN
found that in practice the built-in access costs, on average, between $200 and $300, this at a time when a new home costs more than $100,000.
"Often," Schakowsky said, "the prohibitive cost of making an existing home accessible deprives seniors of their independence and pushes them into nursing homes."
|PAGE 4 NOV - DEC 2002 MOUTH|| |
DART FAMILY RELEASES JUSTIN'S CALL TO ACTION
If you are under the impression that Justin Dart is gone, get over it. Justin is with us still, urging us on.
Deidre Hammon, an advocate whose story appears page 30, told us recently, "How do you think I got this way! Justin did it." On page 32, read of another advocate who just now met Justin, through his writing, and immediately radiated his energy.
Justin is with us.
Now Yoshiko Dart has released another of his legacies, the second installment of his "Toward a Culture of Individualized Empowerment." Here are brief excerpts from his 24-page message.
Now is the time to create an America and a world of victory for all people, with and without disabilities, a victory for all human rights.
With the life of democracy hanging in the balance, it is imperative to rise above politically correct stereotypes and declare a simple, common sense agenda for an America dedicated to individualized empowerment for all.
Now is the time to shine the light of simple clarity into the foggy politics of self-indulgence that is misleading us down the road of retreat and defeat.
This will mean changing the definitions of victory, of success, of responsibility, and of productivity.
Success must no longer be defined in terms of gaining symbols of prestige that make you feel superior to other people.
Responsibility must no longer be defined in terms that permit lifestyles with major investments in conspicuous consumption, spectatorism, elitism and escapism investments in pushing people down rather than lifting them up.
Productivity must no longer be defined only in terms of raw dollars.
All human action must be measured in terms of increasing the quality of life of each and of all in the interdependent continuum which is individual, society and universe.
History has taught us again and again that those who think they are living successfully without taking responsibility for others are suffering a self-defeating illusion that results in poverty, hate, war, and terrorism. Eliminating this ancient stereotype will not be quick or easy. It can only be accomplished by passionate advocates like you, and me, and Power Mary. Our message: the success of each is necessary for the success of all.
To bring our agenda to the people level, I have created Power Mary, a fictional empowered citizen in a culture of individualized empowerment.
Power Mary will advocate and live the new values. She will not have big dollars to compete with the advertisers of "I'm-better-than-you-are" consumption and with media escapism. She will have the profound power of living the truth.
While she struggles toward the promised land of universal empowerment, she will marshal all her resources, however meager, to create a life of conspicuous simplicity, conspicuous economy, conspicuous principle and conspicuous beauty, for herself and all in her personal universe. As with Gandhi, living simple truth is a powerful weapon for change.
Power Mary says that "When you really love people, you want their lives to be complete victories."
Power Mary is an irresistible advertisement for individualized empowerment because she delivers her message with effervescent love.
Everyone has active or potential qualities that can be lifted up with love.
Everyone has needs that can be met with love. Love is the magic ingredient of empowerment. Every human being is empowered by an environment of love. Every human being is responsible to contribute to an environment of love not only in families but also in schools, businesses, social services, communities, and yes, in governments and politics.
Gandhi, Eleanor Roosevelt and Martin Luther King won with a politics of love.
Destroy the injustice.
Love the unjust.
Government of the people, by the people, for the people, cannot fully operate until all the people take responsibility to operate government for the benefit of all the people. Private citizens must participate every day in government at all levels, through adamant advocacy and positive action. Imagine a citizenry made up of people who will insist on paying taxes, who will pick up papers off the street, who will scream so soon and so loud about bad policy, bad ethics, and violations of human rights that the ship of state will stay on course without multiple layers of lawsuits and oppressive armies of bureaucrats.
Power Mary will never be neutral when justice is at stake. She will participate passionately in key political campaigns. She will not only vote, she will register others to vote, educate them, take them to the polls.
Power Mary could serve as CEO and janitor/security guard. Ridiculous? Not at all. The CEO as janitor raises the quality and morale of janitor services. Power Mary gets paid to exercise instead of paying dues at a health club. Her service raises the consciousness and the quality of security and the morale of all in the company.
Whatever she does, Power Mary will earn enough in salary and benefits to enjoy the basics of dignified human existence.
Power Mary may be black, a person with a severe disability, a lesbian and a prisoner, but she will have seamless civil rights protection. More important, as a private citizen, Power Mary will provide the first and most effective line of enforcement of civil rights. Her instant, militant public reaction to civil rights violations will force many immediate positive solutions and prevent many expensive, time-consuming court actions.
Without daily citizen enforcement, there are not enough prosecutors and policemen in the world to address injustice.
God bless you. God bless America. God bless the world. I am with you. I love you. Lead on.
For a copy of the full text of Justin's "Political Platform for the 21st Century," download it from the internet at www.mouthmag.com.
Reeve Lifts a Finger
· Christopher Reeve made headlines in September when he was seen to lift a finger after seven years of paralysis. He'd stuck to an exercise regime in hopes of recovery. In the news coverage that followed, we learned the meaning of "regime": "Paralyzed patients are hanging from harnesses, walking on treadmills and tying down limbs to force the use of paralyzed arms and legs." Next stop, the ducking stool.
Talking Tax Forms
· Billed as "a significant advance in the independence and privacy of blind people," tax forms that can be spoken by talking-text software will make their debut at the IRS website next year. Other government agencies are expected to use the IRS-developed software to make their own on-line forms accessible.
A recent San Francisco State University study found that 87 percent of federal websites are still inaccessible to 14 million citizens with impaired vision.
When the Barrier is Art
· Two giant marble noses, belonging to a new sculpture of the two-headed Roman god Janus, raised eyebrows among Denver's accessibility bureaucrats, but they soon found a way around for people with visual impairments. Black granite "curbs" installed beneath the faces will direct cane-tappers away from potential run-ins with the big beaks. The sculpture, by Washington, D.C., artist Larry Kirkland, fronts a new city office building.
Go Back to the Drawing Board
· In search of a cure for muscular dystrophy with no help from
clipped from the rocky mountain news
Jerry Lewis, by the way University of Washington researchers have been able to restore dystrophin, a muscle protein, in laboratory mice by injecting them with a gene-modifier.
Trouble is, gene therapy in humans ain't working. The only successful experiment so far on a human subject, a three-year-old boy, seems to have given him "an illness similar to leukemia." Genetically-modified leukemia, we'd guess.
Open Season on Incurables
· People with disabilities are making the news again, victims of a Jesuit summer camp for disabled teens and sexual predators in California. More were victimized by a Colorado special ed teacher's aide playing doctor with kids whose accusations would not be believed.
Georgians who are Not Dead Yet performed mock executions at the county courthouse where Carol
Carr, the woman who shot her two adult sons because they were incurable, was up for indictment. (And she was indicted, for felony murder and malice murder, in spite of much sympathy for her "plight" in local and national newspapers.)
A 15-year-old girl with CP died in Grand Junction, Colorado, when her father shot her and then himself. Her "condition was worsening," he claimed in his suicide note. For the record, CP does not "worsen."
A Missouri parent took his autistic teenaged son for a drive in the Kansas countryside, then dumped him in the road where he was killed by another vehicle. The boy was "Satan's child," dear old dad now claims.
In October, parents of another disabled teen beat him nearly to death in his own Illinois back yard. He had helped himself to a hot dog without permission. A neighbor videotaped the beating.
· There's no limit to the ways medical procedures can be bungled, but the House of Representatives wants to limit how much you can collect in court. Nevada and Mississippi, always in the forefront of legal and medical progress, already limit damage awards. The proposed law would also limit attorney's fees but only for you, not for medical practitioners.
Exit Exams Challenged
· Disability Rights Advocates, a California law firm with a habit of winning tough cases, is suing the state on behalf of 173,000 disabled high schoolers, challenging its "uniform" exit exams. More than 90 percent of disabled kids who took the test this year flunked it.
|PAGE 10 NOV - DEC 2002 MOUTH|| |
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