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Shepherd Center's Advocacy Program Has Promoted Full Inclusion for People with Disabilities for 28 Years

Advocacy has always been part of Shepherd Center’s culture. Eventually it became part of its stated mission.

“There was a history of advocacy before I got here,” says Mark Johnson, who was hired in 1987 to create Shepherd’s advocacy program. He now serves as the program’s director. “There weren’t a lot of building codes or guidelines in place in the beginning, so co-founder James Shepherd — because of his family’s business, Shepherd Construction — and other board members were often sought for their design and construction expertise, particularly as the Atlanta airport and MARTA rail system were being developed.”

In the late 1970s, Shepherd Center elevated its young advocacy voice when founding Shepherd Center board member Dave Webb represented Georgia in President Jimmy Carter’s White House Conference on the Handicapped, which aimed to create an agenda for the country as it related to people with disabilities. Fellow founding board member and former DeKalb County Commissioner Clark Harrison also helped change or implement local policy on behalf of people with disabilities.

Yet, no matter where those advocacy efforts surfaced – from Atlanta to Washington – they were rooted in Shepherd Center’s culture and, after Johnson arrived, in Shepherd’s mission.

“I felt we had to make sure that if we wanted advocacy front-and-center, then we’d have to put it in the mission statement,” Johnson says. “We wanted to make sure folks could see it, feel it, hear it and touch it. That made it personal for everyone: If it’s part of our mission, then it’s part of our job and in some cases, it’s a life style.”

Advocacy became part of Shepherd Center’s mission statement in 1988.

Whether inside or outside Shepherd Center, it’s not hard to find the hospital’s advocacy handprints throughout and beyond the Atlanta area. For more than two decades, Shepherd Center has worked to make sure people with disabilities have access to long-term services and supports — homes, for example, with accessible features, such as zero-step entrances and wider doorways. Shepherd Center influenced efforts to make the 1988 Democratic National Convention in Atlanta accessible and set a new accessibility standard for political conventions. It can trace other advocacy efforts to curb cuts around the Atlanta area, wheelchair lifts and ramps on Atlanta’s MARTA buses, efforts to successfully host the 1996 Paralympics, a Georgia Brain and Spinal Injury Trust Fund and, most recently, its celebration of a quarter-century working with, through and on behalf of landmark civil rights legislation, the Americans with Disabilities Act.

How does all of this change happen? One person, one story, one issue at a time, Johnson says.

“I knew a man and woman who both had brain injuries who had heard of a trust fund in Alabama that drew revenue from fines assessed in cases of driving under the influence and helped folks with disabilities pay for home modifications,” Johnson says. “They asked me, ‘Why don’t we have something like that in Georgia?’ And I said, ‘OK, well, let’s go. Let’s organize a campaign and get it done!’”

The effort produced a constitutional amendment that was approved by voters, thanks in part to Shepherd Center’s efforts to mobilize community support to get it passed. The fund now provides a level of support that some people with disabilities need to make necessary vehicle and home modifications.

“It wasn’t a program we needed to start,” Johnson says. “It was a community-led initiative, and we figured out ways to support it by engaging people in the process, particularly the voting process.”

Those efforts, multiplied many times over by many people in many communities across the nation, have sparked real change. Public transportation is more accessible, housing is more accessible, the physical environment is more accessible, and more people with disabilities are attending college and post-secondary schools, which makes them more employable.

“But we still have a long way to go,” Shepherd Center Advocacy Specialist Carol Jones says, “Disability is still not seen as normal and natural, but rather a limitation. In fact, it’s attitudes, public policy and the environment, that limit people, not their disability.”

The biggest hurdle, for example, is employment, because “most people with a disability don’t work,” Johnson says. “We’ve had some big wins, some big in-roads, but the economic piece still lags behind.”

Simply put: Change takes time. Some interventions, such as legislative amendments, can be complex, while others, like curb cuts, ramps and wheelchair lifts, are relatively simple, but few happen overnight because better awareness and understanding are slow to arrive.

That doesn’t deter Shepherd Center’s advocacy culture, however, or its mission, says Shepherd Center President and CEO Gary R. Ulicny, Ph.D., who has led both since 1994.

“For 40 years now, we have been championing changes that bring greater access to people with disabilities,” Dr. Ulicny says. “Better access to buildings and infrastructure, to education, jobs and transportation. To life beyond their injury.

“Since Shepherd Center’s founding, we’ve engaged the greatest minds, talents and passion on behalf of our patients and their rehabilitation, and we’ve done the same through our advocacy – because we want to help our patients while they’re here, but we also want their world to be accessible to them when they leave.”

Get on board the Legacy Tour!

Signed into law on July 26, 1990, the wide-ranging civil rights legislation, the Americans with Disabilities Act (ADA), prohibits discrimination based on disability. To honor its impact, the ADA Legacy Tour is traveling across the country raising awareness of the issues and building excitement for the ADA’s milestone year: a quarter-century protecting, preserving and promoting the rights of people with disabilities. “The ADA's stated goals are equal opportunity, full participation, independent living and economic self-sufficiency,” said Mike Galifianakis, ADA coordinator for the Georgia State Financing and Investment Commission. “These goals align very well with Shepherd Center's mission of working directly with individuals with disabilities in rebuilding their lives with independence and dignity, and advocating for their full inclusion in all aspects of community life.

“Shepherd Center actively demonstrates its commitment to empowering people with disabilities, including through its advocacy office. Mark Johnson is recognized as a national leader in the disability rights movement, and he is a tireless advocate for improving the lives of people with disabilities everywhere, so it’s altogether fitting that the ADA's Legacy Tour include a stop at the Shepherd Center.”

Written by Shawn Reeves

About Shepherd Center

Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.