This article is from http://www.ddc.ohio.gov/Pub/DDSummer03.pdf

John Hockenberry, Dateline NBC reporter and award-winning journalist, presented the opening keynote speech at Solidarity 2003. He urged people to “get their stories out” to broaden disability awareness. Frequently humorous, he kept the audience laughing throughout while delivering a talk rich with meaning and insight. “I define disability as a window,” he said. “It’s a window on culture. It’s a window on what humans are capable of.” He said he’s attended disability-related conferences in years past, but found that the wheelchairs he saw then were all the same, with identical technology. Hockenberry uses a wheelchair.

“What you notice here (at Solidarity) is that there are so many different pieces of equipment,” he said. “Vehicles, gadgets—‘Hey, look what I can do,’ or ‘Hey, look what I’ve figured out,’what’s for sale, what’s available.”“It shows that our stories are coming to the fore,” he said. “We’re landing on the beach; we’re on this big Mayflower ship, and man, we are at Plymouth Rock! ”He described his morning ride to the airport and an exchange he had with a limousine driver after transferring from his wheelchair to the vehicle. “So I put this in the trunk?” the driver asked, referring to Hockenberry’s wheelchair. He told the audience his thought: “No, let’s just leave it here,” he said. “I need to travel light. Are you available to carry me in the city of Columbus all day?”

“In the Third World, it takes five seconds to gather 30 people to
take you anywhere,” he said. In the U.S., “People don’t necessarily like to break out of the world that they’re in,” he said. “It’s very individualistic. It creates barriers that don’t exist in other cultures.”

“It always amazes me when people look at me and don’t see an integrated person with a chair,” he said. “I think a lot of us project in our day-to-day lives that we are completely at one with this disability experience, and we hope it translates,” he said. “We hope that people get it.” He thinks Americans without disabilities might feel more comfortable if they thought of themselves as people with disabilities who are just away from their chairs. Hockenberry described his experience of being hit by a bus in Chicago as he crossed the street using his wheelchair. He was safe, but his chair was crushed. He still remembers how he mourned for his wheelchair’s hurt, because it is a part of him, and his life.

Observing a disability isn’t the same as having one. The experience of having a disability is very different from simply observing someone with a disability and thinking that the experience will not be yours, he noted. “Experiences that bond a people are culturally significant,” he said. Some of the experience is only viewable by those with disabilities, so it is our responsibility to bring those stories to the rest of society, he added. Another aspect is that people in society make judgments based on small amounts of information. With more stories comes more information and a chance for those judgments to be revised.

“This experience is a rich experience,” he said. “It’s not a dead end. ”The stories must come out, he said, “That we are in the community, we are part of the community. It’s not up to others to let us into the community. We are already here.”


Quarterly
SUMMER 2003
Publication of the Ohio Developmental Disabilities Council bringing
disability issues and accomplishments to the attention of Ohioans.

This resonated with us in many ways. I encourage everyone read Hockenberry's book Moving Violations about his experiences after a car accident when he was 19. I think the individuality issue he speaks of speaks to the variety of equipment one finds people with disabilities using today. It is a double edged sword. Drew also was in a car accident after his illness and inability to walk. His car rolled over several times with him in it. It landed with him upside down, seat belt on. He barely had a scratch when my mom and I picked him up. It happened less than a year after I started dating him. Can I tell you how scared I was? You have no clue. And we were just dating then. A couple yrs later the pressure sores happened and we were engaged. Can we say someone has some cat biology in his system? I would add that those of us who are live in family members of people with disabilities are in limbo between being observers and participants in the disability experience. Many of our choices in life are thinking as someone who has a disability even when technically we do not have them ourselves. We must think as if we do. It's like we have two brains. One that thinks as a person in a wheelchair, one who doesn't have to. That's a story to be told, too. I guess here :)