Frank Bowe is talking on the telephone about his concern for the disabled. After 20 minutes, the person on the other end haltingly asks Bowe if he has a disability.
"Yes," he replies, "I am deaf."
Stumbling with surprise, the other person says, "Oh, you must mean partially deaf." "No," answers Bowe, "totally deaf."
Bowe explains that an aide is listening on an extension, translating the conversation in sign language so rapidly there is barely a pause between a question and Bowe's response.
Bowe, a psychologist, is asked if he has experienced job discrimination.
"Yes," he says with a laugh. "I was told I couldn't hold a job because I wouldn't be able to use the phone."
Hale Zukas has cerebral palsy so severe that he is immobile in a wheelchair, his useless hands, tied in a brace. He can only make guttural sounds. Someone mentions cerebral plalsy in Zukas' presence and there is an urgency to the sounds he makes to attract attention. With a pointer attached to the special helmet he wears, Zukas points to a board are key words and the alphabet.
Zukas rapidly taps out his message - people wrongly believe that "all c.p.'s (cerebral palsyed) are mentally ratarded." Zukas has a bachelor's degree in math and a master's in Russian.
Sigi Shapiro was a normal baby. She was almost 3 when she got pneumonia and was placed in isolation in a hospital. A doctor went on vacation and forgot to lessen her medication. Shapiro literally was overdosed on antibiotics, shot into her right hip. When her father came to visit, she could no longer stand. The hospital's verdict, she had somehow contracted polio while in isolation with pneumonia. The father did not sue. Neither did Shapiro years later when the Philadelphia school board refused to certify her to teach in public schools because she was in a wheelchair.
"I let them discriminate against me," says Shapiro. "I wasn't aware then."
These three people are among America's new militants - the blind, crippled, deaf, mentally retarded; victims of war, of automobile wreeks and disease, and accidents of birth.
Last month, after years of being carefully hidden in homes and institutions, hundreds of disabled militants like Bowe and Zukas and Shapiro suddenly marched into peoples' consciousness - picketing in wheel chairs and on crutches, singing the song of the 1960s civil rights marches, "We Shall Overcome." They fought for and got a tough regulation from the Department of Health, Education and Welfare enforcing a four-year-old law forbidding discrimination against the handicapped.
"Hopefully the era of 'Tiny Tim' is gone forever," says Denning Gearhart, who moves in a motorized wheelchair. "We've been too used to sitting on Bob Cratchit's shoulders, saying, 'God Bless Us Every One,' instead of saying, 'Dammit, I am a qualified as the next person."
Gearhart's speech is slurred by the damage done to his nervous system by cerebral palsy. "When I was 30 days old, they noticed I was spastic and retarded and that my spastic and retarded and that my parents should take out a longterm life insurance policy and forget about me. One night recently I saw a man on TV who had been in an institution for the retarded for 25 years. He wasn't retarded. His speech patterns and expressions were mine - I could have been looking at myself." Gearhart, 25, will graduate in June from the University of Pennsylvania law school.
The number of handicapped Americans - an estimated 36 million or nearly one out of six - shocks many, a testimonial to just how hidden they have been. This does not include an additional 10 million alcoholics and 1 1/2 million drug addicts.
The phrase "handicapped" takes in a vast variety of disabilities. The most obvious are the blind, deaf, crippled. New HEW regulations could include someone with a limp or severe facial scar, if the person was discriminated against because either condition was an obstacle to being hired. It includes such diseases and conditions speech impairments, cerebal palsy, epilepsy, muscular dystrophy, multiple sclerosis, alcoholics, drug addicts, heart disease, diabetes, mental retardation, emotional illness, learning disabilities such as dyslexia. Moreover, people who have been misclassified as mentally retarded or discriminated against because of histories of mental illness, heart disease or cancer are classified as handicapped.
The disabled leaders borrowed from the 1960s civil rights marches and began fighting for their rights. A collection of 45 organizations representing 5 million individuals, the American Coalition of Citizens with Disabilities (ACCD), was formed three years ago, Frank Bowe is the director.
One grim reason for their strength today is that more and more Americans are becoming eligible to join this minority. Modern medicine is saving those who used to die - from strokes, automobile accidents, cancer, war wounds - and they are often being saved only to be shunned by society.
Used to being treated like first class citizens in their "former life" they are now "fighting for their rights," says Max Cleland the Veterans Administration director. Cleland lost both legs and an arm in Vietnam. "In World War II, guys injured as badly as I was, died. Vietnam sent some 400,000 disabled veterans back to this country, and they're no shrinking violets. They're going to fight for jobs. Around 30 to 50 per cent of all disabled vets are unemployed."
One protest group included a young woman who injured her spine in a diving accident and a 29-year-old man, Ralf Hotchkiss, who broke his neck in a motorcycle accident 10 years ago. "I was pretty dense about the handicapped until this happened to me," he said. An engineer, Hotchkiss has testified on the Hill for the need to revamp buses to make them accessible to the handicapped, and now he designs motorized "hot rod wheelchairs."
Statistics on the handicapped are proffered, by militants and bureaucrats alike, with the caveat that they are vague and that much is unknown.
They show, however, that millions are undereducated, underemployed and overlooked. In one 1972 survey, 15 1/2 million pepole of working age listed themselves as disabled. The actual number is considered much higher because many, such as those with a history of mental problems or epilepsy, were reluctant to list themselves as disabled.
Of that 15 1/2 million, only 43 per cent were working - compared to 74 per cent of the nondisabled. Only 14 per cent of some 7.7 million severely disabled were employed. One quarter of the disabled had family incomes below the poverty level, compared to 10 per cent of the non-disabled surveyed. According to one 1970 census study, 52 per cent of the disabled who worked made $2,000 a year or less.
"There's an awful lot of typecasting in hiring the handicapped," said one HEW official. "Deaf people 'belong' in the linotype printing field, the blind 'belong' in photo darkrooms, the severely handicapped or retarded in sheltered workshops, for example."
Not all handicapped can become productive, but disabled militants say society would save billions in welfare and institutional costs if the handicapped were better educated, given better jobs, taught how to live alone. For example, Hale Zukas, so severly palsied, now lives alone in Berkeley, Calif., and can afford to hire someone to attend to his needs through a California independent-living fund. This is far less costly than the estimated $15,000 per year for care in a California institution.
Last year, $8 billion was paid out in Social Security to 2,670,000 disabled. Nearly $3 1/2 billion more was paid to 2,115,000 blind and disabled in supplemental security income.
The new HEW regulation provides that handicapped children can no longer be segregated in public schools classrooms to the "maximum extent possible," and that every handicapped child - no matter the nature or severity of the handicap - will be entitled to free public education.
There are 8 million handicapped children, aged 1 to 21.5 1/2 million are school age. One million are receiving no education and only 3 million of them are receiving appropriate educational services, says Bob Herman of the Bureau of the Education of the Handicapped. He elaborates:
"Only a fraction of the kids who graduate who could work are finding work. The problem is they're not getting decent vocational training. You go into a vocational education working shop and ask why they don't take the educable retarded or someone with a physical handicap and they say, "it's too dangerous. He could get his tie caught in a lathe." So you ask, "Why don't you take the tie off?" They don't have any good answers because they don't want to change. With the new regulation, the burden has shifted to those schools. All too many of these kids have been left to make bird houses in sheltered workshop."
Some universities were adapting to the handicapped made it mandatory. At Michigan State University, for example, volunteer readers work with the blind on campus, elevators have the floor numbers marked in braille, ramps are numerious, some telephones and drinking fountains are at wheelchair height.
As disabled students become more a part of campus life, their humor often inspires able-bodied friends. MSU tells a story about a blind former graduate student, Win Smith, who was so adept he could walk across campus without a cane or guide dog. When an awed Jesus Freak asked him how he could step over curbs without tripping, Smith solemnly replied, "The Lord took away my sight - and replaced it with radar in my toes," "Paise the Lord," said the Jesus Freak.
For millions of other students the stories are different. Daniel Yohalem, a lawyer for the Children's Defense Fund, ticks off some cases:
A Georgia high school football hero, paralyzed in a game, is in an institution because his school refuses to widen doors, provide ramps and special transportation for him to attend classes.
An 11th grade girl in Mississippi made it through the 10th grade until her multiple selerosis became so severe that she requrired a wheelchair.Now she is at home receiving no education. The school refuses to rearrange classes so that she could attend school.
6-year-old boy in rural Louisiana attended kindergarten last year but the school provided no remedial help braille or special services. His parents were forced to send him to an institution for the blind 35 miles away. The school refused to pay for his transportation. His older brother now drives him. The mother has no idea what will happen when the older boy goes off to college next year.
Once out of school, many disabled find themselves looked in a vicious circle. Available jobs pay little. Since a paraplegic estimates he has to make $12,000 a year just ot be able to afford the medical benefits he now gets through Medicare, many feel they can't afford to work.
Another major problem is that many cannot ride on buses. "What's the good of a job if you can't get to it?" they ask.
There are sometimes surprises when the handicapped do get hired. The Civil Service Commission surveyed 397 handicapped who constitute the traditionally hardest to place in jobs - more than a third were deaf or had severe hearing losses and most of the deaf were also mute. Many were blind or amputees. Four out of five required no job restructuring at all, and work site modiciations, such as installing ramps were minimal. In another sutdy, the handicapped were absent less than the able bodied.
Changing attitudes, in fact, may be far more difficult than changing architecture. Fear and revuision toward the handicapped, as Max Cleland says, is "primeval."
Frank Bowe became deaf after a bout with measles when he was 3. He remembers losing a balloon in a park and not being able to hear himself cry. "I was crying out my frustrations in a world gone silent."
Today, he says, "the problem is not so much with us - but with the people who are not disable. We are always defined in terms of what we cannot do. We are determined to change those attitudes. I want to help others to see us as people - not as crutches and wheelchairs and canes.