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Mark Johnson says you should 'Take it Personally' about disability rights

This article first appeared in the St. Louis Beacon, June 8, 2011 - Mark Johnson's always been an advocate of civil rights, even if it means confrontation. When Johnson was 20, he injured his neck in a diving accident and became paralyzed. "I use a wheelchair; I have limited functioning of the arms and hands. I basically have paralysis, and it affects the ability to do things. I even have people to assist with daily acts."

Johnson, director of advocacy at The Shepherd Center, a rehabilitation center in Atlanta, doesn't want people to feel sorry for him; he wants people to stand up for their rights. Back in the early 1980s, there wasn't a lot of legislation benefiting disabled people. Johnson and a number of others created a network called ADAPT to help advocate the rights of those in need. Their first fight was to challenge Denver's Regional Transportation bus system, which didn't accommodate wheelchair users. The battle lasted seven years.

"We'd disrupt conferences and legislatures to pay attention to this issue," Johnson said.

The group was one of those that pushed for and won passage of the Americans with Disabilities Act in 1990. Since then Johnson's advocacy has been shifted toward the allocating of Medicare funding. Medicare funding has traditionally been saved for the elderly and disabled, but Johnson says that the money used to help those in need are ending up in the wrong hands and should go more to in-home care.

Johnson will be speaking as a part of the Max Starkloff Speaker's series, at 5:30 p.m. Monday at the Missouri History Museum. His speech entitled, "Take it Personally," delves more deeply into the issue and struggle of ADAPT trying to change the countries' laws. "I'll be a supplement to 'Americans with Disabilities Act - Twenty Years Later'  exhibit at Mallinckrodt Gallery. I'll talk about what people have taught me and how that makes a difference," Johnson said.

Johnson's speech will focus on the idea of living in a time of fundamental restructuring, with China on the rise, interdependent economies and the increasing role of technology. His speech will add insight into what being disabled has taught him and into living as an aging baby boomer.

Current issues include finding the right health insurance and home structure for people with disabilities. Johnson says that as people live longer, they are acquiring disabilities. What happens if a home or workplace lacks adequate design or equipment? Johnson says that it's part of the nature of our culture to sometimes forget that people are still in need. He talked with the Beacon about his work the Shepherd Center and his battle for disabled citizens' rights.

What exactly do you do as the director of advocacy at The Shepherd Center ?

Johnson: I'll summarize this by saying, I stir and connect. It's a broad range of tactics from working with disabled patients to dealing with officials and groups. I'm currently helping a lot of folks with multiple sclerosis. I'm involved with organizing protests, and whatever it takes to make someone make a phone call. I also teach people how to do things and how things are done.

What are some of the challenges of being the director of The Sheperd Center?

Johnson: There are several challenges, we always have funding issues. The issue of newly injured people, they have rights and power. It seems like we've pitted them into a corner. We used to use the term crippled and feel sorry for disabled people. We have this old image of people with disabilities. I think the whole process will take some time.

In the mid '90s, your group brought a lawsuit against Blue Cross-Blue Shield; can you tell me about the trial?

Johnson: Blue Cross-Blue Shield used to be nonprofit, but converted to for-profit. When they converted, they had assets in the bank. We thought they should be used to serve the undeserved. We sued them and took the money for Georgia Healthcare Foundation; we thought the money needed to be used for the underprivileged. Unfortunately the whole process took about 10 years."

Can you tell me a little about the It's Our Story video project?

Johnson: People with disabilities are starting to help more people. There seems to be a lot more exhibits going up. Officials are building the Center for Human Rights in Atlanta. It's not a charity story, these are real projects. When I got injured, I had everyone wanting to hold me. Someone would only want to take care of me, because that was the attitude of the time. No one would really listen to what I had to say. Some people still resist it. There's a parallel with movements such women getting the right to vote and the civil rights movement.

Besides dealing with these parallels, I noticed that you started the ADA torch relay. Can you tell me about it?

Johnson: Well, it was the 10th anniversary of the ADA, and several of us thought it was important to make disability more visible to people. We really wanted to connect with people. We took the torch (running) through Topeka, Kans. We just want people to pay attention and to engage the community. We're even thinking about doing it again in 2015, for the 25th anniversary.

Ray Carter, a senior at Purdue University, is a Beacon intern.