Doctor's disabilities a springboard to helping others
Margaret Stineman spent many of her formative years in the slow classes that were then the domain of children who were, as she delicately puts it, "not achieving."
Born with a severely deformed spine and shoulders, she endured 15 operations as a child on her eyes, internal organs, and misshapen bones. She spent much of her adolescence in a body cast, making her the object of ridicule. Problems with the muscles that control her eyes severely limited her vision. People around her did not think she was capable of much, and she agreed.
How that child - functionally illiterate when she left high school - became an artist and then a doctor and then a respected researcher and then a member of the prestigious Institute of Medicine is a remarkable story of serendipity, determination, motherly devotion, and well-timed mentoring.
Then there's the emotional alchemy. A set of circumstances that would have made many people angry, bitter, or at least deeply insecure seems instead to have forged a woman who is, at 58, confident, profoundly thoughtful, joyful, and serene.
Joel Streim, a longtime friend and research collaborator at the University of Pennsylvania, called her "one of the special people of the world." Just as Stineman focuses on her own strengths rather than weaknesses, he said, she sees other people's abilities and "has a real talent . . . to make them more creative and innovative."
Now a professor of both physical medicine and rehabilitation and epidemiology whose work has focused on measuring and compensating for disability, Stineman does not like talking about her physical problems. But she recently gave a rare speech to colleagues at Penn about how she had made it in academia, and now hopes her story will help fellow health workers see the potential in their patients.
Stineman's journey to the upper levels of medical research began with art. Bored in school, unable to see well, and plagued by medical problems, she turned inward and expressed her private world by painting and sculpting. In early adaptations for her handicaps, she used templates and mirrors to compensate for a lack of depth perception. Some of her teachers noticed her talent, and it got her into Temple University's Tyler School of Art.
Soon after art school, Stineman won a prestigious scholarship that would have sent her to Rome to paint for two years. She said members of the selection committee rejected her after she had a physical. "They didn't want to send a crippled person to represent the United States," she said.
She was crushed at first, but then looked at the problem from another angle - a defining quality of both her life and art.
"I was hurt. I was upset. I was angry," Stineman said. "This transformed into something that was so beautiful: a recognition that I must be smart or I wouldn't have won this thing. I must be smart. Something must have been missed. That's when I had the wake-up of my life."
For a while, she rejected art - she saw it as too emotional - and threw herself into the discipline and rules of science. Stineman's dream, and she knew it was probably an impossible one, was to become a doctor. Engineering was her fallback.
Her inventor father worked as a machinist at Drexel University. She enrolled as a special student there, taking one class at a time. "I decided that I would do absolutely anything to learn," Stineman said. "I was so infatuated with the fact that I could go from barely knowing arithmetic to getting an A in calculus just because I had applied myself."
She met what might have been her Waterloo in biology. She did well on the fill-in-the-blanks part of a test but flunked the essay.
"You can't spell," the professor told her. "You have no sense of sentence structure, and you can't formulate your ideas. Are you from a foreign country?"
Instead of taking offense, Stineman took an English-as-a-second-language class.
"This professor really saved my career," she said.
After using her art portfolio to talk about visual perception, she got into Hahnemann Medical College. It was a lot harder to keep up there. She almost quit, but some key professors helped her at crucial moments. Because Stineman learns better through hearing information - and can process it quickly - than by reading it, her mother read her textbooks into a special tape recorder that Stineman then played back at high speed.
She brought a different perspective to the care of people with disabilities. "I felt as a child they kept trying to fix me," she said, "but nobody was helping me to learn how to live with the way I was."
Stineman can walk short distances, but usually uses a motorized wheelchair or cart. Patient reaction, she said, ranges from dismay - "Now even my doctor's disabled" - to "Oh, my God, if she can do it, I can do it."
She reconciled with art after she recognized the creativity in science.
One day, she was fascinated by how a spherical bottle stopper inverted the landscape outside her window. She decided to write a mathematical formula explaining why that would happen. Yes, that's her idea of fun.
"I painted the image, and then I used mathematics to solve the image. This has been what has driven my whole life," Stineman said. "If you want to understand something, whether it is human nature, whether it is a scientific problem, use many different ways of looking at it."
Her facility with math and computers led to her biggest claim to fame: She helped design the system Medicare began using in 2002 to decide how much to pay for rehabilitation care for individual patients.
She remembers the responsibility she felt going to work the day the hospital began using the new system. "I was practicing medicine under rules that had come out of my head," she marveled.
As Stineman waited for the elevator, she said the prayer she says each day about her patients. "May I have the strength to see what I need to see, to know what I need to know, so that I can care for you in the best possible way."
Stineman, whose long brown hair is streaked with gray, focuses on research now. She is in charge of three large National Institutes of Health grants aimed at identifying the most helpful rehabilitation services after stroke and leg amputations and at helping older people stay in their homes. Although lung problems reduce her stamina, she is known as a tireless worker. A computer that speed-reads documents out loud makes it possible for her to handle the work.
She stands only 4-foot-9, barely tall enough to see over a lectern. She estimates she'd be 9 inches taller if she had a normal spine. She often props herself up with her knees and elbows to sit upright.
She does special exercises and eats an organic vegetarian diet. Although she has had suitors, Stineman said she had never loved anyone enough to curtail her work. She relaxes in a Zen garden her mother created at the house where she lives near the university. She said she had dealt with the pain in her life by creating art, writing music, and keeping journals.
During her recent speech to coworkers, Stineman used self-portraits to explain the evolution of her art and her psyche. A high school effort shows a pretty, intense-eyed girl's face framed by dark, ill-defined hair. There's no body, and the work lacks perspective. Another early, harsher piece shows her twisted body lying on a table in a bare room with a pit.
In 2004, she did a painting of her face and body as an adult with an X-ray-like rendering of her curving spine highlighted.
Two years later, she added her white lab coat, stethoscope, and gold caduceus with the word courage carved in it. Finally, Stineman had put it all together, proudly.
"My body is a vehicle for my mind, and I can wear this coat and I can take care of others," she said, displaying the painting on a screen.
"Was I disabled or was I gifted or am I both?" she asked. "Are we all both? I believe we are."
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