For a Baby Boomer like me, any mention of the word "polio" conjures up images of needles and sugar cubes. And a few images of children wearing leg braces and walking with crutches, usually illustrating March of Dimes posters. I was born the same year the polio vaccine was introduced. As I was growing up, it was becoming less and less likely for a child to contract the disease. But it still had the power to instill fear, since there were still victims who hadn't escaped it's devastating effects—effects that were hard to hide.
The Polio Journals: Lessons from My Mother is all about trying to hide the effects of polio, as well as trying to hide from them. During the early part of the twentieth century, when polio epidemics were frighteningly frequent, to be a child with polio, or the parent of a child with polio, was to be viewed as socially and morally unclean.
When Carol Greenfeld contracted polio in 1927 at the age of two, her mother, Evelyn, was already consumed with guilt over the death of her first daughter at the same age. Little Carol's illness must have seemed like a condemnation of Evelyn's fitness as a mother. Throughout her life, Carol and her parents refused to acknowledge the "elephant in the room" that was her condition, even while they all had to make major adjustments and sacrifices to accommodate it.
As a memoir both of Carol Greenfeld Rosenstiel and her daughter, Anne Gross, the book tracks a journey through pain, shame, and accomplishment, but for Carol there was little in the way of triumph. She accomplished much in spite of her disability, but was never able to let go of her guilt and rage over her condition. In that respect, Anne achieved more than she did. As much as I find to recommend the book as a lesson on what secrets and shame can do to a family, I was also fascinated by the small piece of American history included in its pages.
In 1924 Franklin D. Roosevelt started building the Warm Springs Foundation in Georgia as a place of refuge and treatment for himself and other "polios," the name he used to refer to everyone crippled by the disease. The same year he was elected governor of New York, Carol, then aged four, made her first visit to the facility. She and her aunt Mary, who accompanied her, stayed in a cottage on the property that was next door to the one in which FDR stayed. Over the years that she returned to the facility, Carol and FDR became good friends. Carol wrote him a letter after her first visit and he wrote back and sent her a photograph of himself autographed "for my little friend, Carol Greenfeld from Franklin D. Roosevelt, Warm Springs 1929." Carol later had the photograph framed and kept it on display in her music room.
FDR contracted polio in 1921 at age 39. Although modern experts believe now that he contracted Guillain-Barre Syndrome instead, at the time he became the most public face of polio. Although his efforts did little to counteract the stigma associated with polio at the time, FDR became a champion of the disabled. He recognized the benefits of associating with others who were similarly afflicted to counter the sense of isolation, and he founded the March of Dimes charity. His influence wasn't entirely positive, however. He promoted an image of "The Good Handicapped Person" who was always cheerful, always determined, always willing to do whatever was necessary to prove that he or she was "just like everyone else."
Evidence from a number of interviews with polio survivors (cited in the notes section at the back of the book) shows how damaging it was to try to live up to that image. Even people without profound physical problems have bad days. "The Good Handicapped Person" never could. Although no amount of will power and optimism could repair the muscle and nerve damage meted out by polio, no one wanted to hear "I can't do any more than this." Not even doctors.
While I don't believe we have lost all of the wrong-headed notions about physical challenges and the people who have to deal with them on a personal level, I think we've come a long way from the image of The Good Handicapped Person. More of us accept that not everyone has to be just like everyone else, and that many conditions affect different people differently. And that not everything is someone's fault.
Read an excerpt from this book.
Anne K. Gross, Ph.D., received her doctorate in clinical psychology from Duke University, after which she dedicated her career to the treatment of individuals with disabilities and chronic illnesses. Dedicated to bringing her message of understanding individuals with disabilities into the classroom, Dr. Gross serves on the education committee of Colorado's Anti-Defamation League as well as participates in their school based No Place for Hate program. She has published in professional psychology journals as well as essays and editorials in the Denver Post and New Mobility magazine. Visit her website.
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