What has bothered Louise McKnew all along is the gushing of sympathy. Her son--a St. Alban's senior and star athlete with plans to attend Yale University--was paralyzed from the chest down in a 1978 car accident. Reflexively, people become sympathizers when McKnew tells them of the tragedy.
To them, as with most of the public, spinal cord injuries that put accident victims into wheelchairs as paraplegics or quadraplegics are the essence of hopelessness. It's the injury of finality. Comebacks may be staged from cancer and heart disease, but not spinal cord paralysis.
"I don't want people's sympathy," McKnew says today, five years after the accident on an icy Washington street a mile from the family's home. "I want their attention. It isn't a sad story that my son was hurt--and that spinal cord injuries paralyze 60 Americans a day. The sad part is that there is something we can do, but that word is not getting out. It's really an optimistic story."
And a memorable one. Louise McKnew, a single parent and a singular force of citizen advocacy, is currently the director of the Washington office of the National Spinal Cord Injury Association, a group with 41 local chapters. Her life was irrevocably changed by the injury to her son, throwing her into both the subject of neurologic disability and the world of medicine.
This paralysis of spinal cord patients in wheelchairs was one thing, she discovered. The paralysis of medicine to go beyond the conventional thinking --that prevention and cures are unthinkable--was another. A current medical textbook says this about the treatment of the 20,000 citizens injured every year: "Quadraplegics and paraplegics need to learn to live with the sequelae of paralysis. The goal of rehabilitation is to minimize the disability and assist the patient toward independence to the extent possible."
In July 1982 hearings before the House subcommittee on hospitals and health care, McKnew offered evidence that this "learn-to-live-with-it" attitude is outdated. It is 1950s medicine applied to 1980s injuries. She told of researchers, backed by federal and private grants, who are making advances --biochemical and neurophysiological discoveries, transplant techniques and genetic engineering--that offer "unprecedented promise for not only modifying but preventing and curing the paralysis that follows a spinal cord injury."
One of these researchers is Dr. Jerry Bernstein of the Veterans Administration, who is also a professor of neurosurgery and physiology at the George Washington University school of medicine. McKnew, he said, is anything but a dreamer. He states that more has been learned in the last 10 years of research than ever before. The research is aimed at a cure, even for the worst cases.
Neither McKnew nor Bernstein wants to raise false hopes that today's paralyzed wheelchair patients will be tomorrow's unparalyzed walkers. They are saying that the research is cause for hope, and powerfully so. What's needed is a corresponding commitment of government and private money to broaden the research and then apply it.
Except for a few researchers and organizations, including the Veterans Administration, the commitment isn't there. The association puts the annual national cost of spinal cord injuries at $6 billion. Only about $16 million goes for regeneration or restoration research. McKnew says that "we are spending annually approximately $12,000 per person for care, and less than $32 per person for cure. That's fiscal insanity."
The bleak economics of spinal cord injuries are only part of it. Almost half of the 500,000 paralyzed population were injured in highway crashes. Automatic safety devices such as airbags, which American auto companies refuse to install and the Reagan administration refuses to require, would cut the toll significantly. So would the banning of violent and expendable sports like high school and college football. Those breaking their backs or necks are mostly young men. Their average age is 19. Only about one in six of the newly injured receives immediate and high-quality medical care.
The one comforting statistic is that every one of the injured, as well as each family, is a priority concern of Louise McKnew and the National Spinal Cord Injury Association. They are the tailwind behind the wheelchairs. They have set aside March as the month for STEPS: Steps to End Paralysis. It is the organization's first national campaign. It's needed.