Most polio survivors tell a story of struggle and triumph: the sudden, random onset of paralysis, the gradual restoration of strength seemingly as a result of individual willpower and, finally, for many, resumption of an active, productive life, which leads them to believe they have put polio behind them.

The story, for most, is made possible by denying their disability and the reality of what was lost and the life that might have been. Perhaps the most famous example of disability denial is provided by our 32nd president, Franklin D. Roosevelt. Although he regained normal use of his arms fairly quickly after his polio illness, he spent many years in a heroic, but largely unsuccessful, effort to relearn to walk. Even after he became president, Roosevelt went to extraordinary lengths to disguise the extent of his disability. In the waning months of his life, he experienced increasing muscular weakness that appears to be compatible with post-polio syndrome.

Virtually every polio survivor I have met has displayed self-deception or denial. Until recently, most of us tended to avoid other polio survivors and polio help groups. We knew we weren't physically normal, but if we thought about it at all, we considered ourselves as inconvenienced, not disabled. By retraining the muscles that remained, we felt we could do just about anything, even become president, like Roosevelt.

Later in life, when polio survivors begin to experience the new weakness of post-polio syndrome, the denial usually is still intact, which makes understanding and accepting the new changes all the more difficult. As they begin to accept the fact that they are disabled, they may be overcome by feelings of anger, bitterness and despair. Fortunately, a post-polio support movement has sprung up, and there are now more than 300 support groups throughout the country. In my own case, it took me several years after developing post-polio syndrome before I joined a support group and began talking with other polio survivors about my new weakness and pain. Only then did I start to grieve for the body I lost 35 years earlier.

Many post-polio survivors exhibit an extraordinary commitment to exercise, a legacy from their recovery from polio. When a physical therapist prescribed 10 repetitions twice a day to strengthen a certain muscle, patients typically would do 20 or more repetitions three times a day. For many, exercise became a daily obsession, for others, almost a religious devotion. Thus, survivors of polio developed a special relation to their bodies unknown to able-bodied persons. They experienced a new mastery over their muscles and movements, an element of control that had not existed before polio. It was a visceral lesson that carried over into other aspects of their lives and probably accounts for why so many polio survivors have excelled at school and at work.

Individuals who have recovered from paralytic polio have, on average, more years of formal education than the general population, and they take on marriage and family responsibilities at approximately the same rate as persons who are not disabled. Also, the rate of employment of polio survivors is reported to be about four times the rate of other disabled persons.

Over the past few decades much of the leadership for the disability movement has come from polio survivors. Their efforts have led to the founding of the Independent Living movement and to the passage of legislation such as the Architectural Barriers Act and the Americans with Disabilities Act.
What is not widely known is that many of these leaders were among the most disabled: walking with braces and crutches, riding motorized wheelchairs and attached to portable ventilators. In his novel about the plague, Albert Camus wrote, "It helps men to rise above themselves." He could have been describing polio.