In the mid-1950s, surveys showed that people in the United States feared polio—also called poliomyelitis or infantile paralysis—more than they feared the atom bomb. The terror they felt was largely the result of their sense of hopelessness in preventing an outbreak, the mysteries of the disease, and the fact that so many children were tragically affected.
Polio has been around since ancient times. The disease is caused by the poliovirus, which enters the intestinal tract through the mouth and may find its way into the bloodstream. It is thought to spread by hand-to-hand contact.
Polio’s virulence and incidence increased during the nineteenth and twentieth centuries. Ironically, it was the improvement of sanitation systems that most likely led to polio epidemics. In earlier times, when there were open sewage systems and outdoor latrines, people were exposed to the virus as babies—that is, while they were still partially protected by the maternal antibodies (disease-fighting agents produced by the immune system) in their bloodstream. While they might come down with a mild case of polio, this very early exposure to the poliovirus protected them, because it enabled them to develop their own protective antibodies against future exposure to the disease. Such protection was far less likely to occur in more sanitary times, and older children became vulnerable, since they had not been exposed to the poliovirus as babies.
In the majority of cases during the polio epidemics of the twentieth century, the infected individuals experienced only mild gastrointestinal or respiratory problems. Many did not even realize they were infected (although they could still spread the virus to others). However, for a minority, the virus left the intestinal tract and entered the central nervous system, where it damaged or destroyed motor neurons, resulting in severe muscle weakness or permanent paralysis.
When the virus affected muscles necessary for breathing, patients were in danger of dying; the only way to keep them alive was to place them in an “iron lung,” a large, elaborate machine in which they lay immobile, often for days at a time. Many polio patients eventually regained the ability to breathe on their own, to walk, and to function without the aid of an iron lung, braces, crutches, and wheelchairs; others, tragically, did not.
One of those stricken was Franklin Delano Roosevelt, who contracted polio as a young man. After serving as governor of New York, Roosevelt became president of the United States in 1933. Even though he needed leg braces and a cane in order to stand, he wanted to appear confident and able-bodied to the American public, so his staff discouraged any photographs or films of him in a wheelchair. However, during his presidency, Roosevelt established the National Foundation for Infantile Paralysis to raise money for polio research and financial aid for patients. Because of the huge success of its fund-raising campaigns, in which millions of coins from people of all walks of life, including children, poured into its headquarters from across the nation, the foundation’s name was later changed to the March of Dimes.
The desperate race to create a safe and effective vaccine to prevent polio was centered in the United States, funded by the March of Dimes and other foundations. The young Dr. Jonas Salk and his team of dedicated scientists at the University of Pittsburgh, working sixteen-hour days six days a week in the basement and lower floors of the Municipal Hospital for Contagious Diseases, were the first to meet with success. Pittsburgh was, and remains, proud of its association with this team, and Salk did indeed live “somewhere” in Squirrel Hill—although Professor Doctor George Gutman is fictional.
Salk’s theory was that a vaccine containing a small amount of the dead poliovirus would “fool” the body into creating antibodies against it without causing the disease itself—a method he had used in his previous research with influenza vaccines. Many others—for example, Dr. Albert Sabin—preferred a vaccine using a live but weakened (or “attenuated”) virus, but Salk’s vaccine was the first to be tested on groups of humans.
Salk and his team laboriously identified three distinct types of the poliovirus. They realized they would have to create a vaccine that successfully protected against them all. Large quantities of the polio-virus were grown “in vitro” (that is, in cells removed from the living organism from which they came), using cultures of monkey kidney tissue. The goal of Salk’s team was to inactivate the virus with just the right amount of formaldehyde to make the virus noninfectious but still able to stimulate the production of protective antibodies. Eventually they created a vaccine (made up of the three strains of the inactivated poliovirus) that did just that.
The first tests on small groups of humans were conducted by Salk’s team in the summer of 1952. The researchers also eventually vaccinated themselves and family members. Some of these early subjects already had polio. They were given a vaccine matching the strain of polio already in their system in order to test whether even higher antibody levels could be stimulated. (In my story, I imagined that Franny might have heard about these particular tests with polio victims, misunderstanding the intent of the researchers and imagining a “cure.”) No one contracted the disease after receiving the vaccine during these small initial experiments, and it was determined by means of blood tests that the vaccination produced protective antibodies.
On March 26, 1953, on a CBS radio program entitled The Scientist Speaks for Himself, largely to calm the nation and ask for patience, Salk announced that an effective, safe vaccine had been tested on small groups of human subjects. In May 1953 and in the early months of 1954, Salk and his team initiated the first community-based pilot trials of the vaccine, inoculating thousands of Pittsburgh schoolchildren. And on April 26, 1954, the largest controlled vaccine field trial in the history of medicine began. It involved 1.8 million grade-school children at 217 test sites in 44 states, and more than 300,000 doctors, teachers, nurses, and volunteers helped administer the vaccine. A year later, on April 12, 1955, the statistical results were announced based on a study of those who had received the vaccine compared with those who had received a placebo (an inert inoculation) or no vaccination at all. Headlines across the world proclaimed, “The Vaccine Works!” Those who had, relatively recently, rejoiced at the end of World War II now rejoiced at the end of another war: the war against polio. Jonas Salk was hailed as a hero and a savior.
The character Francine B. Katzenback is based on stories and memoirs of those stricken by polio during that time. Each person’s story was unique; however, many shared certain aspects. Like Franny, some people were visited by “angels,” who were actually white-clad nurses ministering to them during their fevers. Many remembered the isolation they endured because of others’ ignorance, prejudice, and fear. For this reason, and because of the physical inaccessibility of many municipal buildings, the disabled children were often prevented from attending school with their friends. Creswell School is fictional, but there was a Memorial Home for Crippled Children in Squirrel Hill, now the Children’s Institute. Franny makes a rebellious statement at the end of my story, but in real life she probably would have been required to continue her education at the Home, which was, and still is, an excellent institution.
Caregivers ran the gamut from saintly to mean, as I’ve depicted. Frightened parents were dependent upon the advice of “experts.” Sometimes, patients’ limbs were treated by casting and splinting in an attempt to restore normal alignment. The method of treating polio developed by Sister Elizabeth Kenny, an Australian bush nurse and former British army nurse—hence, the honorific title “Sister” (she was not a nun)—was a godsend to patients. Her technique involved applying hot, wet packs of wool to relax contracted muscles, followed by stretching of the paralyzed limbs by the caregiver. In a 1951 Gallup poll, Americans considered her the most admirable woman in the world. However, some caregivers’ abuse and lack of compassion greatly aggravated the situation for those in their care. Since wheelchairs were very often viewed as restrictive and cumbersome, the ultimate goal was to help the patient walk again, even if “walking” entailed crutches, braces, and an unwieldy gait.
There
are several silver linings threaded through the story of polio in America. These include the miraculous advances in research, disease prevention, and public-health efforts the crisis stimulated. Organized voluntarism became a strong part of our national consciousness as well. Although the Pittsburgh Rag is fictional, the other newspaper clippings in the story are based on actual articles of the time from the Pittsburgh Press and the Pittsburgh Post-Gazette, reflecting the pride and community spirit of that city. Towns and cities across America replicated that spirit with an outpouring of funds, time, and energy devoted to the polio campaign. Dr. Salk himself was known to wonder why this energy and commitment could not be applied to all our community problems.
Another silver lining, and the one most relevant to Franny’s story, is that the community spirit didn’t end when the disease was eradicated in North America. In a way, it represented the beginning of an important part of American history. Many polio victims grew up to fight for the rights of the disabled, especially when they entered college or university in the turbulent 1960s, adding their voices to those of other disabled persons—indeed, all those struggling for basic civil rights. I like to imagine that Franny would have been one of those protestors.
The disabled had never before been perceived as having “rights”; they were simply expected to adjust to the needs and wishes of the rest of society. Mobility, job equality, and inclusion in public education were often denied them; physical accommodations—such as curb cuts, wheelchair ramps, and parking spots and bathroom facilities for the handicapped—did not yet exist. Their protests and demands led to the passage of the Education of All Handicapped Children Act in 1975 (known today as the Individuals with Disabilities Education Act), the Americans with Disabilities Act of 1990, and other civil rights achievements. Though much work remains to be done, today’s society better accommodates the needs of the disabled and recognizes that the wheelchair, which once carried such a stigma, can be both liberating and empowering.
The outreach efforts of worldwide organizations have eradicated polio almost everywhere. However, the disease still exists in some underdeveloped countries. Often, irrational fears and unfounded rumors about the polio vaccine prevent children from receiving it. There is no cure for polio, but it can be prevented, and those who remain unvaccinated may still be infectious to others, even if they themselves show no signs of the disease.
It is often difficult for us in the twenty-first century to imagine a time when vaccines for dreaded diseases did not exist. Researchers at the University of Pittsburgh, in an analysis of fifty-six diseases going back to the nineteenth century, have concluded that childhood vaccinations have prevented more than a hundred million cases of contagious disease in the United States alone since 1924.
To many, Franz Kafka’s stories reflect the meaningless and unpredictability of life, and certainly Franny’s life seems to take a Kafkaesque turn. Yet sometimes literature, and life itself, offers hidden beauties. The professor arrives at an understanding of Kafka’s The Metamorphosis, inspired by Franny’s self-acceptance and endurance.
Zadie Ben’s story about the “broken vessels” and the light trapped within their broken shards is attributed to Rabbi Isaac Luria in the sixteenth century. The story represents an important aspect of Jewish tradition called tikkun olam, or “the healing of the world,” which many define as repair through social action. The “light” can be taken to mean tolerance, justice, and peace, all the good stuff meant to be delivered to the world in that vessel, and which every one of us can help release from those metaphorical shards. I very much wanted to write a story about a young girl disabled by polio who begins to repair the world in her small way.
I also wanted to write about someone who is able to find great solace in books, good people, the delights of the imagination, and the power of her own voice. That’s Franny, and, if we are as fortunate as she, that’s all of us.
BIBLIOGRAPHY
ON A SPECIAL SHELF IN THE AUTHOR’S BOOKCASE, SOME OF THE CHILDREN’S BOOKS BELOVED BY FRANNY
Alcott, Louisa May. Little Women. New York: Grosset & Dunlap, 1947.
Barrie, J. M. Peter Pan. New York: Puffin Books, 2010.
Baum, L. Frank. The Wonderful Wizard of Oz. 100th anniversary edition. New York: HarperCollins, 2000.
Burnett, Frances Hodgson. The Secret Garden. 100th anniversary edition. New York: HarperCollins, 2011.
Carroll, Lewis. Alice’s Adventures in Wonderland. New York: Puffiin Books, 2008.
Farley, Walter. The Black Stallion. New York: Random House, 1971.
Montgomery, L. M. Anne of Green Gables. Toronto, Ontario: Ryerson Press, 1955.
O’Hara, Mary. My Friend Flicka. New York: HarperFestival, 2003.
Sewell, Anna. Black Beauty. London, England: Vintage Random House, 2012.
Steinbeck, John. The Red Pony. New York: Penguin Books, 1994.
Stevenson, Robert Louis. Treasure Island. New York: Dover, 1993.
White, E. B. Charlotte’s Web. Illustrated by Garth Williams. New York: HarperTrophy, 1980.
Wilder, Laura Ingalls. Little House in the Big Woods. Illustrated by Garth Williams. New York: HarperCollins, 2004.
ON OTHER SHELVES
Beisser, Arnold. Flying Without Wings: Personal Reflections on Loss, Disability, and Healing. New York: Bantam, 1990.
De Kruif, Paul. Microbe Hunters. New York: Harcourt, 1926.
Dillard, Annie. An American Childhood. New York: Harper Perennial, 2008.
Fleischer, Doris Zames, and Frieda Zames. The Disability Rights Movement: From Charity to Confrontation. 2nd ed. Philadelphia: Temple University Press, 2011.
Gould, Tony. A Summer Plague: Polio and Its Survivors. New Haven: Yale University Press, 1995.
Gray, William S., A. Sterl Artley, and May Hill Arbuthnot. The New We Look and See. 1st ed. Illustrated by Eleanor Campbell. New York: Scott Foresman and Company, 1951.
Greenblatt, Stephen. The Swerve: How the World Became Modern. New York: Norton, 2011.
Heumann, Judith E. Disability Rights and Independent Living Movement Oral History Project: Pioneering Disability Rights Advocate and Leader in Disabled in Action, New York; Center for Independent Living, Berkeley; World Institute on Disability; and the US Department of Education, 1960s–2000. Online Archive of California, 2004.
Kehret, Peg. Small Steps: The Year I Got Polio. Anniversary edition. Morton Grove, Ill.: Albert Whitman & Co., 2006.
Mattlin, Ben. Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity. New York: Skyhorse, 2012.
McCormick, Adele von Rüst, and Marlena Deborah McCormick. Horse Sense and the Human Heart: What Horses Can Teach Us About Trust, Bonding, Creativity and Spirituality. Deerfield Beach, Fla.: Health Communications, 1997.
Neumayer, Peter F. The Annotated Charlotte’s Web. New York: HarperCollins, 1994.
Nichols, Janice Flood. Twin Voices: A Memoir of Polio, the Forgotten Killer. Bloomington, Ind.: iUniverse, 2008.
Oshinsky, David M. Polio: An American Story. New York: Oxford University Press, 2005.
Rogers, Naomi. Polio Wars: Sister Kenny and the Golden Age of American Medicine. New York: Oxford University Press, 2014.
Sass, Edmund J., with George Gottfried and Anthony Sorem. Polio’s Legacy: An Oral History. Lanham, Md.: University Press of America, 1996.
Scott, Naomi. Special Needs, Special Horses: A Guide to the Benefits of Therapeutic Riding. Denton: University of North Texas Press, 2005.
Seavey, Nina Gilden, Jane S. Smith, and Paul Wagner. A Paralyzing Fear: The Triumph Over Polio in America. New York: TV Books, 1998.
Shapiro, Joseph P. No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Three Rivers Press, 1994.
Silver, Julie, and Daniel Wilson. Polio Voices: An Oral History from the American Polio Epidemics and Worldwide Eradication Efforts. Westport, Conn.: Praeger, 2007.
Squirrel Hill Historical Society. Images of America: Squirrel Hill. Charleston, S.C.: Arcadia, 2005.
van Panhuis, Willem G., and others. “Contagious Diseases in the U.S. from 1988 to the Present.” New England Journal of Medicine, 2013; 369:2152–58, November 28, 2013.
Vaughan, Roger. Listen to the Music: The Life of Hilary Koprowski. New York: Springer-Verlag, 2000.
Wilson, Daniel J. Living with Polio: The Epidemic and Its Survivors. Chicago: University of Chicago Press, 2005.
OTHER RESOURCES
Pittsburgh Press archives
Pittsburgh Post-Gazette archives
Timeline Development of the Salk Polio Vaccine at the University of Pittsburgh:
http://www.salk.edu/about/discovery_timeline.html
Film about Salk and the Vaccine:
http://www.shotfeltroundtheworld.com/index.php
Videos by Students:
http://www.takeashotcontest.org/entries
The Bill and Melinda Gates Foundation and Polio Partners:
http://www.gatesfoundation.org/What-We-Do/Global-Development/Polio/Partners
Post-Polio Health International:
www.polioplace.org; www.post-polio.org; www.ventusers.org
An annotated list of some of the writers, composers, musicians, entertainers, and celebrities appreciated by Fleabrain and Franny:
www.joannerocklin.com
SONGS
“A Dream Is a Wish Your Heart Makes,” written and composed by Mack David, Al Hoffman, and Jerry Livingston for the Walt Disney movie Cinderella, 1950.
Fleabrain Loves Franny Page 18