by Sam Maddox

We looked for someone whose influence on people with disabilities is exceptionally beneficial, deep and lasting. John Kemp has super-charged the way we relate to our own and the larger culture, and the way society relates to us. New Mobility is proud to present its 1997 Person of the Year.

John D. Kemp is in Los Angeles promoting the next big thing, the 1999 International Art and Soul Festival, a celebration of disability culture and arts. He's running around town in his rented Chrysler convertible, setting up sponsorships, nailing down relations with the city, with the press. He agrees to meet at his hotel room, which happens to be poolside at the not-too-shabby Beverly Hilton.

We're seated just a few feet from a very special blond sun worshipper who's very secure in her healthful physicality. As we discuss the hot-button issues of the disability agendaóoppression, assisted suicide, genetic testing, unification of people on the social margin só we remind ourselves not to stare.

Kemp knows all about staring. He's out-front about being a curiosity, being the human face of disability. In fact, he's got the poster-child thing down cold: He's been put on display one way or another since he was a 10-year-old North Dakota kid traveling the country for Easter Seals with Hedda Hopper. He's met presidents, sports heroes and captains of industry, even a Hollywood bombshell or two. They stare, usually when they think he's not looking. They all stare. But Kemp stares right back. His open smile cuts through all your conditioned reflexes, or nails you dead to rights for your blushing reproach. If he wants you to like him, he makes it easy.

Kemp, 48, was born without lower arms and legs. He can walk on prostheses but uses a scooter most the time. You can't miss his hands, the shiny metal clamps. If Kemp extends the right one for a handshake, he can measure your level of comfort right away. Those who reach for his arm above the clamp, or those who start bowing, "they're uncool." But he confesses to his own wee anxiety about his handsóthat he could be stopped by the police while driving at night, that the flash of metal could be mistaken for a gun. It hasn't happened yet.

Include Me Out

"My objective when he was small," says John Kemp's father, "was to try to help him be a self-sufficient adult. I take great pleasure today to see that that is the case."

Except for playing the piano and riding a bike, John did all the things boys did in the 1950s. He wanted to be a major league ballplayer. He still adores Hank Aaron and can recite the starting lineup of the '57 Braves. His father, careful not to discourage the young slugger, reminded himówell, hammered the pointóthat the boy might better use his head than his body.
"He was right," says John the younger. Today, he gives abundant credit to his dad, John B., who single-handedly raised three kidsóincluding John's older and younger sistersóon a federal civil servant's salary. "My dad was a tremendous influence on me," says Kemp. "He taught me to accept challenges and social commitments. He was a strong, principled person and as good an advocate as there ever has been."

The advocacy began early. "My father made a choice when I was going to kindergarten," Kemp says. "I went to regular school instead of the School for Crippled Children. Did that change me? Oh my God, I would never be where I am had I gone to a segregated place. I learned so much how to get along, how to get what I needed, how to be accepted, how not to surrender my identity."
By the time he was in high school, Kemp saw that his big sister was dating athletes. He did his best to emulate their style by managing the basketball and baseball teams. There was one other kid in school with a disability, he says, a guy who had polio. They ate lunch together and gimped up three flights of stairs to class. But Kemp couldn't relate. "All through high school I was trying to pass as nondisabled. I was trying to be a jock. I didn't want any inclusion in the disability world."
By the 10th grade, Kemp wanted to be a Catholic priest. The church nipped that vocation in the bud when a priest told him, "You can never be a priest because you have to have hands to touch the body and blood of Christ." Then Kemp wanted to be a doctor. "My mom died of cancer when I was 15 months old and I was going to find the cure," he says. Early on in the premed program at Georgetown, though, the serious chem majors made their move and "zoomed right past me." So Kemp switched to history, and eventually, having hung out in attorney-thick D.C., saw what lawyers do and figured, "I can do that."

College years were the halcyon days for Kemp. He dated, he "specialized in socializing," he partied in step with the times and, having done so, he says, he will never be a Supreme Court Justice.

Very Special John

In his early 20s, Kemp also found his true identity as a person with a disability. Easter Seals asked him to go on the road again to speak on behalf of the organization. There was no lightning bolt of awareness. "I began to listen and think. I began to pay attention to ways of discrimination and I became offended by things. Eventually, I came to see myself: 'I am one of those people. I've got to get proud.'"
Kemp went on to study law at Washburn University in Topeka, Kansas. As for that period, well, Washburn just named Kemp the 1997 alumnus of the year, so he'll be nice. But he hasn't been back to Topeka since. A memory from there of a coed who wouldn't go out with him still chafes: "She said, 'I hate to say this to you, but I can't go out with you because you are handicapped.'"
With degree in hand, Kemp went on to become a lawyer for the Environmental Protection Agency, then he and a law school buddy started a consulting firm to help companies comply with emerging disability law. He went back to Easter Seals for awhile. As he worked his way from job to job, he met the leaders of the disability rights movement and was influenced by the late Ed Roberts ("It was like meeting Gandhi for me"), Judy Heumann and Paul Hearne.

Marca Bristo, the Chicago activist who now heads the National Council on Disability, was instrumental in nurturing Kemp's disability pride. "She would point out how people with disabilities are so conditioned to always apologize," he says." 'I'm sorry, I can't get into the building.' But why apologize? It's the environment. It's not my fault."

While Kemp knew his rights, he did not join the militant civil rights actions of the late 1980s. "It didn't fit my personality," he says. "I'm more of a moderate. I know when to back off. Am I an activist? Yes. Do I believe in civil disobedience? Yes." He says he's glad there are people willing to blow up the curbs, but it's just not his style.

After Easter Seals, Kemp ran United Cerebral Palsy's half-billion-dollar-a-year program. Kemp's the consummate Beltway insider now, on the board of the Dole Foundation, a co-founder of the fledgling American Association for People with Disabilities, a Clinton appointee to the National Council on Disability.

To some friends, he's not just John, he's "Very Special" John. They vow to keep calling him that until the name of his current employer loses its very special baggage.

"It's that name thing," says Kemp. He is CEO and president of Very Special Arts (see "State of the Arts," NM August 1997), the Washington, D.C.-based organization founded by Jean Kennedy Smith in 1974. "Our name does conjure up a few inappropriate images and attitudes, doesn't it? And we're not just special, we're very special."

Kemp has made changing the name a priority, although there are VSA board membersóincluding four from the Kennedy familyówho don't want to change anything. "They say we've built up equity in the name," says VS John. "We found out, though, that 93 percent of people we polled didn't have a clue who we were anyway, so the only ones who'd be offended by a name change are people who are already working in the organization."

Kemp, like a lot of harried people, is shopping for balance in his life. He's begun going to Mass again after many years of feigning agnosticism. He is soon to be single, having been married for 17 years. He and Sherry don't have children.

"We just grew apart," he says. "She used to say, with a certain sarcasm, 'Oh, you've got a cause.' Well, that's right, I do. It's never changed. But it just wasn't her cause. My disability is a predominant part of my life. There are times when it's, maybe, 'Hey, give the disability thing a rest.' But it's hard not to keep it in your focus."

Kemp does. It's a labor of love. It's a rat race. The Art and Soul Festival is looming. The VSA Gallery West opened last year in Beverly Hills. VSA has initiated an Express Diversity program featuring the history of people with disabilities, and is co-sponsoring a Youth Leadership Summit with the National Council on Disability. VSA affiliates all over the country must be supported. Funds must be raised. Meetings must be attended, speeches given, people managed.

"As a manager," Kemp says, "my goal is to develop human beings, recognizing that everyone is different." To an outside observer, he seems to motivate with humility and a strong sense of values. And while Kemp is a full-time employee of VSA, he sees his role in broader terms. "We as an organization are committed to systems change. That's advocacy. People in Washington get nervous when you mention advocacy, but we cannot ignore the issues. People want nonprofits to kick some ass."

What issues? These came up:

ï Assisted suicide: "Why is there such an incredible amount of time spent assisting people to die rather than helping them to live? We need to get information to vulnerable people with age or disability. Are they getting the support from government or other people so they can live?"

ï Genetic testing: "If you can spit, pee or bleed, you can lose control of your genetic makeup. If you have a predisposition to cancer or a genetic disease, it can be analyzed and used against you. This is real and it's about to blow sky-high. We need to build in safeguards against technological discrimination." The topic is close to home for Kemp. "Would I be here today if my mother knew I would not have arms or legs? We need to safeguard the right of a mother to make the decision, but we need to make sure she is well-informed."

ï Jobs: "Fortunately, big business has gotten the employment issues. They had to. They're running out of qualified individuals to do the work. They need to find more bodies. They need us. But it's just pathetic that 67 percent of people with disabilities are unemployed. How many more human interest stories are we going to see in the media before people in this country realize that 30 to 40 million people are being screwed?"

ï Unification: "It's our biggest challenge as a community. How can all people with disabilities come back together? We have to raise our eyes to look out to a farther horizon. We have to commit ourselves to finding a common ground, and surrender part of our specific disability agendas. The issue is getting a job, not a specific piece of equipment."

ï Sheltered workshops: "Foundations need to know that disability doesn't mean medical. If they want to make a real social investment, they need to stop funding sheltered workshops. I see them funded all the time and I always think, 'What could I do with that $150,000?' Who's guiding the foundations' thinking when they fund these outdated programs?"

ï Community services: "People still don't get CASA [the Community Attendant Services Act, a proposed amendment to the Social Security Act that would allow many Medicaid recipients to live at home instead of in nursing homes]. But in a few years, we will look back on this era, from the 1970s to the 1990s, and we'll be embarrassed as a society that we allowed people to be shut off from having full lives by locking them away in institutions."

As John Kemp buries himself in the work of "promoting creative free expression for people with disabilities," his roles continue to multiply. He's a dreamer and a cheerleader, a coalition maker and an ambassador. He's a wiseguy. He's got confidence, integrity and vision. He's New Mobility's Person of the year, and he's already got his epitaph picked out:

"He tried really hard to do really good."

Notable People of 1997 So many nominations, so little space. Our inaugural Person of the Year award drew many, many letters and e-mails, causing considerable angst among the editors. What were we looking for, anyway? Before reviewing the nominations, we outlined our criteria: someone whose vision fosters independence, choice, expression and inclusion; someone whose work or example positively affects a large number of people with disabilities; someone who has a disability. Virtually all the nominees met the first and third criteria, and many not mentioned here will provide the basis for future profiles of "local heroes" ópeople making a difference in their communities. Some nominees, however, have touched people across the country or across the globe with their creativity, their advocacy or their success as journalists, scientists, politicians or intellectuals. These peopleóincluding popular candidates Victoria Lewis and Diane Colemanóare noted below with direct quotes from their nominators: Victoria Lewis (left) for tirelessly seeking out, supporting and bringing disabled playwrights to the "Other Voices" program at the Mark Taper Forum in Los Angeles. "She is a pioneer who has devoted a significant part of her life and considerable talents to changing the cultural landscape to include disability fully." Diane Coleman (right) for founding Not Dead Yet and building a coalition of voices opposing assisted suicide. "She spearheaded the NDY movement that has both sides of the doctor-assisted suicide debate in an uproar." Andrew Batavia (left) for his long-term work in disability and health policy, and his principled 1997 advocacy on the assisted suicide debate. "Drew pushes the limits on the issue of self-determination." Susan Sygall (right) for facilitating international exchange, leadership training and community services development around the world, and for publishing a 1997 edition of A World of Options. "Susan is tapping into the power of 500 million disabled people worldwide to improve attitudes and lives." U.S. Sen. Max Cleland , D-Ga., (left) for wheeling where few have wheeled before: Capitol Hill. "His election was a landmark, because it wasn't about disability, and it was a major, coveted office." Cheryl Marie Wade (right) for her poetry, performance art, essays, activism and, in 1997, the online newsletter Gnarlybone News. "Cheryl's energy, intelligence and carefully focused anger are just what we need so much more of." Stephen Hawking (left) for his pre-eminence in theoretical physics, and for inspiring the 1997 PBS series Stephen Hawking's Universe. "He has forever linked a high level of disability and a high level of accomplishment." Carol Gill (right) for her scholarship and nurturing of disability culture not only as a concept, but also for teaching disabled children the value of life with a disability. "Her work will affect the self-concept of all generations to come." John Hockenberry (left) for investigative reporting from his wheelchair, particularly his September 1997 Dateline piece on job and housing discrimination."He boldly goes where no crip has gone before." Barbara Waxman Fiduccia (right) for her advocacy of women's reproductive rights, for defining disability feminism, and for helping catalyze a 1997 bill making hate crimes against people with disabilities illegal. "Barb never stops." Kenny Fries (left) for editing Staring Back: The Disability Experience From the Inside Out (Plume, 1997), a groundbreaking anthology of essays, poetry, fiction and drama. "This book redefines the meaning of disability identity." Paul Longmore (right) for his academic accomplishments as a disability historian and his in-the-trenches work in 1997 opposing assisted suicide. "Paul's smart, articulate, and he's not afraid to mix it up." Ronald Ray Smith (left) for his 1997 showdown with Las Vegas casinos, tour operators and developers to enforce the ADA and the Federal Housing Act. "He's got a big agenda and he gets big results. He's going to change the country." Walton D. Dutcher (right) for his tireless watchdogging of the people who presume to speak for us, New Mobility included. "His energy is rivaled only by his insight." Mark O'Brien (left) for sharing his soul in Breathing Lessons, a 1997 Academy Award winning documentary by Jessica Yu. "Mark has the unusual habit of being equally honest about the pain of living and about his desire to live." Fred Fay , (right) winner of the 1997 Betts Award, for his omnipresent advocacy. "He's the quintessential disability rights advocate and personal disability policy adviser to the president. That good enough?" Stephanie Thomas and Bob Kafka for their organizational efforts behind the success of American Disabled for Attendant Programs Today. ADAPT scored some major victories in 1997, including the introduction of HR 2020, or CASA, the Community Attendant Services Act, which may make independent living possible for many people now living in nursing homes. "They routinely accomplish the impossible, like getting Newt [Gingrich, Speaker of the House] to sponsor major progressive legislation. We would all be so screwed if we didn't have a force like ADAPT." For his years of principled power- brokering in the nation's capital. He died August 12, 1997. Afew years back, Evan Kemp Jr. flew to Czechoslovakia to attend a disability rights gathering. When the plane landed in Germany, an ambulance was waiting. The airport authorities insisted that, because Evan used a motorized wheelchair, he had to be transported by ambulance to the terminal, a distance of about 500 feet. "Of course he raised hell the whole time," says Janine Bertram Kemp, Evan's wife and companion for 12 years. But those were the rules, she says, so he had to submit to the humiliating ride. It didn't happen only in Germany. Once when Evan and Janine flew to Jacksonville, Fla., an ambulance was waiting to take them into town. "And when they saw his wheelchair," recalls Janine, "they said, 'We can't take that, either.'" The Kemps took the next flight home to Washington, D.C. At the time, Evan was no ordinary traveler. He was chairman of the Equal Employment Opportunity Commission, personally appointed by President George Bush. So I guess the moral of the story is that none of us who wheel through the world are immune to these sober doses of humiliation. It's a good thing Evan never wanted to forget where he came from, because it would have been impossible. The unique bond between Janine and Evan speaks volumes about the kind of person he was. Janine describes herself as "radical and revolutionary." In the 1970s, she took up with a brigade of urban guerrillas, and spent four years in prison as a result. Though she is still an ardent leftist, she has forsaken violent tactics."I don't know why I did it," she says. "I really hate guns. I just thank God nobody was hurt." Evan, on the other hand, had no qualms about calling himself a conservative Republican. So how could two people like that end up together? "We used to joke about how we were the convict and the cripple," Janine says. "Evan was the most radical leader I ever met. He truly wanted to make sure each individual got a chance to make it to the starting gate. He believed this society had to radically change." Evan was disabled at birth by Kugelberg-Weylander syndrome, a form of muscular dystrophy. When he graduated with honors from the University of Virginia law school, he was turned down by 39 law firms before being hired by the Internal Revenue Service. He later went to work for the Securities and Exchange Commission, and eventually won a lawsuit against the SEC after he was denied a promotion because he used a wheelchair. All that rejection is what sharpened Evan's sense of justice, Janine says. "He would put his job and his neck on the table to make sure that no young person with a disability endured the discrimination that he did." Evan's political modus operandi was to win Republicans over to disability rights. He worked hard to galvanize bipartisan action, and it was the coalition he nurtured that moved the Americans With Disabilities Act through Congress. When Bush signed the ADA, Evan was at his side. Evan was extremely vocal in his opposition to the Jerry Lewis telethon. "He always hated the pity approach," Janine says. In 1992, during the height of our Jerry's Orphans campaign when people with MD were picketing the telethon and television stations, Evan always took our side. We were getting so much press that Lewis wrote Bush asking him to gag Evan. Every time Evan spoke against the telethon, it was at the risk of losing his job at the EEOC. He never backed off. After the incident at the German airport, Evan and Janine and the delegation spent four days in Czechoslovakia and flew back to the same airport. This time, there was no ambulance and they were treated with respect and courtesy. "It was like disability rights had hit the airport," says Janine. Mike Ervin

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