During the summer of 2000, the Spirit of ADA Torch Relay linked dozens of cities and thousands of people in support of one of the 20th century’s most important pieces of civil rights legislation. It was an accomplishment on a scale rarely achieved in the disability community, and it was largely the vision of one man: Mark Johnson, 49, a dedicated disability rights organizer since the early ’80s. Johnson took on the event over five years ago, and throughout that time he worked determinedly with hundreds of organizers nationwide to make it happen. Leadership like this deserves recognition. That is why Mark Johnson is New Mobility’s Person of the Year.
The ADA Torch Relay began in Houston on June 11, backtracked to California, shot across the Midwest, joined forces with the National Council on Independent Living for a huge national ADA celebration in Washington, D.C., and finally ended on Aug. 7 at the United Nations. Before it was over, the torch relay stopped in 24 cities and brought disabled and nondisabled people together to celebrate the 10th anniversary of the ADA. Equally as important, it helped shore up support for the ADA in the face of serious attacks recently mounted in Congress and the Supreme Court.
For many, participating in the torch relay was their first real disability advocacy event, and one they are not likely to forget. “It was definitely a moment,” says Coleman Ganoe, who carried the Spirit of ADA Torch in San Francisco on June 17. “They spoke about how we’re all banded together to accomplish something that needs to be done–disabled, ablebodied, women, men, minorities. There was this feeling of solidarity, that we’re all in it together.” Getting people involved. Building support for the ADA. This was precisely the purpose that Mark Johnson had in mind from the beginning.
Johnson, born and raised in North Carolina, became a C5-6 quadriplegic in a 1971 diving accident while a sophomore in college. Before his accident, he planned on studying business and becoming a salesman, like his father. But post-accident plans have a way of changing; instead Johnson earned a master’s in guidance and counseling from UNC-Charlotte in 1977. Then came counseling, consulting and founding a local chapter of the National Paraplegia Foundation. By the early ’80s he had married his wife, Susan, and moved to Denver, where circumstances drew him deeper into activism.
The story goes like this: One day Johnson had to turn to public transportation after his van broke down, but the only accessible buses were local routes, which added an hour to his travel time. Seeking a remedy, he joined forces with Wade Blank, known for introducing direct action to the disability community. “Me and my Southern style,” says Johnson. “I researched the transportation problem completely. Wade was laughing all the time, but he didn’t blow me off. We eventually forced the transit company to vote on making more buses accessible, but they voted the same way they did before I did all that work. It ripped my heart out of my chest.” That’s when Johnson “stopped passing” and claimed his identity as a person with a disability. “All of a sudden there was this newfound rage,” he says.
Blank invited Johnson to his house for a meeting to discuss an action that could move the transit company, RTD, toward accessibility. The very next day was Johnson’s first taste of activism. “We went to RTD headquarters, a brand new building. We went up to the elevator and a sign said ‘out of order.’ I started losing it. This was a game and I didn’t want to play by their rules.” Determined to make his point, he jumped out of his wheelchair and crawled up the steps. That night, when Susan asked how his day went, he said fine and went to bed, exhausted. The next day Susan went skiing with friends. Someone opened a newspaper and said, “Susan, your husband’s in the Post!” Indeed he was–chained to a handrail in the RTD building.
It wasn’t long before Johnson, Blank and others had founded ADAPT, which at that time stood for Americans Disabled for Accessible Public Transportation. But the birth of his daughter in 1984 eventually led him back to Georgia–“I wanted my daughter to know my parents (Bill and Betty), her uncles, aunts and cousins.”
Johnson has steadily organized around disability issues since then, helping Eleanor Smith found Concrete Change, the group that pushes for new houses with at least one no-step entrance and wider bathrooms, and Life Worthy of Living, which sprang from the Georgia v. McAfee decision. In that case, a judge found that Larry McAfee, a quadriplegic, had the right to assisted suicide. To the public, this meant a man wanted to end his life because he was disabled, but Johnson saw that McAfee’s death wish was directly related to the state’s long-term care policies, which forced him to live in a nursing home. Eventually Johnson and others helped McAfee find independent living resources, and McAfee chose to live.
One of Johnson’s activities is leading workshops in organizing for disability rights. At a workshop in Spokane, Wash., in 1995, the idea for the Spirit of ADA Torch Relay was born. Says Johnson, “This was right after the Million Man March. People said, ‘Why can’t the disability community ever do something big?’ I said, ‘It’s because no one ever decided to–what do you want?'”
They wanted something like the Olympic torch relay. Johnson said it’s a good idea and he’d give it a try.
But he waited until the 1996 Paralympics were over because his present employer, Atlanta-based Shepherd Center, was deeply involved in the games, and Johnson was the center’s coordinator of advocacy and community support. When the Paralympics were over, he challenged Paul Timmons, publisher of Resources, a Georgia disability magazine, to get involved. That was the beginning of Initiative 2000, as the torch relay was known at the time. From there, routes were set and plans laid for a national ADA celebration.
But there was a problem–money. For a while Johnson thought he’d have to pull the plug on the Relay. Then, he says, “Things just started falling into our laps.” Becky Ogle, cofounder of Justice for All, asked Johnson how the relay was going. He told her that although he knew there’d be a lot of local events, he wasn’t sure the Relay was going to happen. “She called me a couple of weeks later and said, ‘I understand that Volkswagen’s wanting to donate. You thinking what I’m thinking?'” It wasn’t long before Volkswagen signed on as the title sponsor.
Johnson’s vision didn’t stop there. “It posed a new opportunity,” he says. “We always wanted something to exist after the relay. So I went to the American Association of People with Disabilities and said how about if we give AAPD the money and let them be the national host organization.” This is classic Johnson. In the midst of organizing one of the biggest endeavors undertaken by the disability community in the last 10 years, he is thinking to the future.
“Mark Johnson was one of the first people to reach out to me,” says Andy Imparato, Chief Executive Officer of AAPD. “Using the Torch Relay to grow AAPD and the movement was a powerful vision that grew into a powerful event.”
There were other serendipitous signs. Johnson called up Lex Frieden, vice president of the Institute of Rehabilitation and Research in Houston, to ask if Frieden was planning anything for the ADA. Turns out, Frieden had former President Bush lined up to give medals to movement leaders to commemorate the 10th anniversary. “Well, how about having him light the torch?” asked Johnson. Soon the relay that almost died had been plumped up from 10 to 24 cities. And the National Council on Independent Living changed its usual May meeting time to coincide with the 10th anniversary celebration and the torch relay coming to town. “And that was without any of us knowing for sure that there would be a 10th anniversary torch relay,” says Johnson.
One of the biggest achievements of the Torch Relay has been the “Sign the Pledge” campaign. Elected officials and other policymakers throughout the United States were asked to sign a pledge to support the ADA. To date, over 350 elected officials have signed, from President Clinton to village aldermen throughout the nation. These pledges acted like a litmus test on where candidates stood. At one point, Johnson says, “Bush and Gore were challenging each other on their stands on the Olmstead decision,” which interpreted the ADA to require states to provide services in “the most integrated setting.”
But there has been an important side benefit as well. Johnson feels the torch relay successfully thwarted strong anti-ADA sentiment that may have happened on the 10th anniversary. He also says that the torch relay’s not really over yet. “All along this thing was supposed to be a campaign, not just a relay. The flow is continuing–the Rolling Freedom Express, the March for Justice, it keeps going.”
Johnson is seen by some as a disability rights diplomat, and to hardliners that is not a compliment. Barb Toomer, cofounder of the Salt Lake City-based Disability Rights Action Committee, was an early critic of the Torch Relay. She says, “We get ourselves tangled up in all these areas when we could be putting those efforts into getting people out of nursing homes. That’s got to be our legacy–it has to be freedom.” But when the Torch came through her town, Toomer helped organize. Why? “Mark’s a really good guy, and he put a hell of a lot of effort into it. So we had a big press conference and a lot of Paralympians came. And Sen. [Orrin] Hatch. It was really nice.”
“My goal all along,” says Johnson, “has just been to get more people involved.”
Perhaps that’s because he realized long ago that activism takes time to bring results and, he says, he’d rather not create a dependency on himself. “I’ve got to have balance in my life. I’m married to Susan and I have a 16-year-old daughter, Lindsey. I like coaching my daughter’s softball team and that kind of stuff. I don’t have to do it all, or be it all.”
Johnson says the real secret behind his successful organizing is his faith. “To me, I am here for a reason. The role I play continues to evolve, but the reason’s pretty clear–I am here to serve. I wake up each day, read a devotional based on Bible verse, do a little meditation, remind myself that it all happens for a reason, and that it all works out. That belief gets stronger. It evolves.”
So what’s next? What will the future look like when Mark Johnson’s vision of more and more people getting involved is realized? “The ultimate community,” he answers. “It looks like this: a level playing field, an equal opportunity. It’s all based on the fact that you are valued and respected, regardless of what your IQ might be, or how fast you can run a hundred meters.”