by Lori A. Wood
Writer, editor, wheelchair acrobat, public speaker, and juggler . . . Gary Karp wants to challenge the world’s view of disability as damage.
In July 1973, when he was 18, Gary Karp fell 25 feet out of a tree he was trying to clear after a storm in his hometown of Southfield, Michigan.
He spent six weeks in Providence General Hospital, close to home.
“I had a laminectomy to remove broken bone from compressing the spinal cord, and a spinal fusion to rebuild the spine,” he says. “I was lucky during the next six weeks of healing from the surgery. I wasn’t in a lot of pain, had tremendous family support, and people were coming in droves to visit me. I was basking in all this attention.”
A smart, talented boy, Karp often felt insecure. “People probably would not have judged me an insecure kid,” he says. “I experienced my insecurity as an internal thing that I worked not to let show.” After his accident, the insecurity lingered a bit. “It was satisfying to have everybody reacting with such care.”
A Balancing Act
For seven weeks, Karp faced rehabilitation at what is now known as the Rehabilitation Institute of Michigan. “I was pretty busy, but I liked the fact that I was active and working toward independence,” he says. On his first day there, his doctor said that his condition would remain unchanged, but Karp challenged that assertion. “It was about knowing that what I had in my mind had an impact on my body.”
To help improve his sense of balance, Karp played catch with physical therapists. To regain upper body strength, he used barbells and a machine they called a “rickshaw.” “You sit in the middle of it and push down on two bars to lift weights,” Karp explains. He also practiced walking with braces and crutches and climbing stairs, ultimately finding that he was much more mobile using a wheelchair.
“Nobody ever said that I wouldn’t walk. I knew better, but I was still thinking in terms of recovering completely. I wanted to allow myself to believe it because I knew that would give it the best possible chance of happening. At the same time, it needed to be okay if it didn’t happen or I knew I’d be setting myself up for a huge emotional crash.”
Karp is a self-professed “wheelchair showoff.”
“There’s a part of that which is functional,” Karp says, referring to his acrobatics. “It extends my mobility—like being able to jump curbs. I also think of it as an internal compensation for how it feels to be in the world with a disability, the feeling that the world sees you as damaged. I want to cancel that for people. I’m always interested in cutting through cultural stereotypes.”
Rebuilding
The day before Karp left rehab, his father died. “I was told that he had a heart attack. He was under a lot of pressure, starting a new business, and had high blood pressure.” After his father’s death, he lived with his mother for three more years in their family home.
In the winter of 1973, Karp began studying architecture at the Lawrence Institute of Technology in Southfield. “I had one year of college already, but I missed the fall term at Lawrence because of my injury,” he explains. “The building where I studied was split-level, without the ground level. It was either half-up or half-down, and I had to be carried in and out. I started campaigning to the administration and became very visible on campus.”
Karp wrote about the issue in the college newspaper and the story was featured on local television news. “That experience got me interested in having an impact on general campus issues there.” He became active in student organizing and politics and became president of the Lawrence Student Chapter of the American Institute of Architects.
While working toward a post-graduate degree, Karp learned a painful truth: his father’s death was the result, not of a heart attack, but suicide. A pharmacist, the elder Karp knew the right combination of drugs to take in order to end his life painlessly. “Having done it the day before I came home, clearly my injury had much to do with it, but he was also under great stress in various other ways. And as I began to explore more about who my Dad really was, I learned that he actually suffered great insecurities, which I never imagined since he was so good at maintaining the image of the strong father who was always in control. Ironically, learning this allowed me to be more accepting of my own internal fears and insecurities. He was human after all.”
The Juggler Vein
In 1981, a year after earning a 5-year graduate degree in architecture, Karp began work as a graphic designer. Three years later, his business brought him to California. That move also brought him a short-lived marriage and a longer-lasting hobby.
“I became good friends with my next door neighbor, a juggler,” Karp says. “The International Jugglers’ Association held its 1986 summer festival in San Jose. I went to the closing show and was so turned on by it that I asked my friend to teach me how to juggle three balls.”
Karp began attending weekly gatherings of jugglers. “This community explores what is possible, which gives it a lot in common with having a disability. I learned several juggling patterns, and found that I was second- guessing my limits, instead of testing them. Many times, I broke through what I thought was my limit, and ultimately became advanced enough to pass clubs in complex group patterns. It has changed my entire orientation to my life.”
The Wheel World
In 1996, Karp signed a contract with the publishing company of O’Reilly and Associates to write a book called Life on Wheels: For the Active Wheelchair User. “In 1992, I had developed tendonitis in my arms from computer work, so I started working in the area of ergonomics,” he said. As a consultant, he showed people and companies how to avoid computer-related injuries. He wrote about it on the Internet, which caught the attention of an editor looking to develop medical books that targeted consumers. Each book in the series was to be written by someone directly affected by the discussed topic. “The world doesn’t understand how we live with our disabilities, so I wanted to help bring some clarity to the truth of what the disability experience is really about.” Karp’s Web site, www.lifeonwheels.net, began as a way to gather quotes for the eponymous book, and is now an informative resource for patients with SCI. The book was released in 1999.
One chapter, “Wheelchair Selection,” evolved into a 1998 book of its own, Choosing a Wheelchair. “The most important thing is to understand how to be seated in the chair,” Karp states. “The chair needs to be adjusted, so that you’re as stable as possible, and your posture is neutral, so that you’re able to make the most of your physical capacity to control your own mobility.”
In February 2004, Karp became a board member of the National Spinal Cord Injury Association (NSCIA) and the executive editor of SCI Life, the Association’s quarterly publication, which can be accessed at www.spinalcord.org/html/sci/. “It’s been a blessing to have a voice in the disability media.” Among other things, Karp writes frankly about sexuality. “Disability does not preclude having satisfying intimate relationships and I found that people are hungry for this information. If the subject is addressed with respect, it’s not cause for embarrassment.”
In March 2004, From There to Here: Stories of Adjustment to Spinal Cord Injury, was released. “The book was my co-editor Stanley Klein’s idea,” he says. “His idea was to ask people with SCI to write ‘What would you tell somebody newly confronted with SCI?’ I thought it would be more powerful to ask people to write intimately about their own individual process of adjustment, and he immediately agreed.” This book is available at www.newmobility.com, or by calling 888-850-0344, ext. 209.
“I’m working on clarifying disability for larger society,” Karp says. His company, Onsight Awareness Training (www.onsighttraining.com), helps him do this. It strives to show employers that people with disabilities are a highly qualified segment of the population.
Liberation
As a public speaker, Karp describes his experience with SCI and how language reinforces society’s ideas about disability. “I’m not ‘confined to a wheelchair,’ I’m liberated by it,” he declares. Through his United Spinal Association membership, he hopes to find others who share this philosophy. “Alliances amongst those of us with common interests are extremely valuable.”
Gary Karp doesn’t wait for life to come to him; his disability hasn’t changed that. “Human beings have this incredible capacity to adapt. I believe people have a reserve of inner strength that runs deeper than they are often willing to believe.”
Lori A. Wood is a frequent contributor to Orbit.
