By Meredith Hindley
This isn't the story about the horse-race between Sabin and Salk, but about the culture of polio and how it changed who we are," said Nina Seavey, director of a new documentary film A Paralyzing Fear: The Story of Polio in America.
Sabin, Salk, and medical science have a place in Seavey's film, but they share the spotlight with a consideration of how polio shaped American society.
Over the course of ninety minutes, A Paralyzing Fear demonstrates how the impulse to shun the polio's victims eventually gave way to a massive campaign of social action and philanthropy designed to provide care for polio sufferers and support research to find a cure. What Seavey ultimately crafts is an exploration into America's attitudes towards disease and fear of the unknown.
The impetus for A Paralyzing Fear came from Seavey's work in the classroom. In preparing to teach a summer institute on documentary filmmaking at George Washington University's Center for History in the Media, she realized that no comprehensive film had ever been made about polio, let alone the culture of polio. Seavey used the work that summer to flesh out the possibility of making a film. After receiving a scripting grant from the NEH in 1995, she enlisted Paul Wagner, the Oscar-winning documentary filmmaker and a longtime colleague, to serve as producer, and Geoffrey Ward, FDR biographer and documentary screenwriter, to serve as senior creative consultant. Seavey also recruited other historians and medical sciences experts to serve as part of an advisory team.
Seavey began to explore the available visual resources at the March of Dimes, Warm Springs, the Tuskegee Institute, and the Museum of Radio and Broadcasting. Proving that she was serious about doing a film on polio -- and doing it right -- was crucial to getting into the March of Dimes archives. Material from the Marches of Dimes' fight against polio was placed in Fort Lee, New Jersey warehouse in 1962. Since then, the March of Dimes had refused to allow researchers, including Seavey, access. The organization consistently argued that their focus lay in the present and they preferred not to dwell on the past. There was another issue at stake: the March of Dimes wasn't quite sure what was there.
Seavey finally convinced the March of Dimes to give her access to the warehouse -- which held 3,000 films and 5,000 photographs -- in exchange for logs of what her research team found and a small rights fee. She transported the films to an office in Takoma Park, Maryland where each film was viewed and logged. "There is just amazing 1950s footage," said Seavey. "It's funny and its heartwarming. It's just of the period." Ultimately 300 films were transferred to tape.
The warehouse yielded an amazing find: never-seen-before footage of Franklin D. Roosevelt at Warm Springs. "There is incredible stuff of him and his braces -- FDR really being a polio person," said Seavey. Throughout his life FDR worked hard not to be seen as a person with a disability, even mastering a technique which allowed him to appear to walk despite being paralyzed from the waist down. The footage discovered by Seavey shows him playing in the pool at Warm Springs and lounging with other polio sufferers, at ease with his disability. The footage of FDR made its way into the March of Dimes collection when material from the Warm Springs Foundation and the Infantile Paralysis Foundation was consolidated in the early 1950s.
Drawing on the March of Dimes archives and other sources, Seavey constructs a film about a disease that engendered tremendous fear in American society in the first part of the century. Around since the time of the Egyptian pharaohs, it wasn't until the 1890s that polio became a public health concern in the United States. Between 1894 and 1907 there were seventeen epidemics of varying intensity across the country. It was the 1916 epidemic that brought polio into the national consciousness.
In this early period, polio was commonly referred to as infantile paralysis because of its prevalence among young children. As more adults and older children began to fall ill during the 1930s, the medical name for the disease, poliomyelitis, was increasingly used and often shortened to "polio." The disease, which paralyses the central nervous system, is spread when finger contact is made with feces and then in turn with food and eating utensils. In the majority of polio infections, the body's immune system destroys the virus and the person develops an immunity. In approximately two percent of the cases, however, the disease runs rampant and major neurological damage occurs, leaving the victim with a distinct disability.
A Paralyzing Fear opens with the 1916 epidemic and follows society's and science's reaction to the disease. Seavey made a conscious decision not to tell the viewer up front about the nature of polio or how it was transmitted. "You don't find out anything about polio in the film until the scientists find out. When the scientists find out, is when the viewers find out," said Seavey. "We just let the process of discovery unfold." Seavey's technique also allows her to demonstrate how fear of the unknown shaped America's response.
In the 1916 polio epidemic, 27,000 people contracted the disease, 9,000 in New York City alone, and 6,000 died. Almost all of the victims were under five years of age. Although it affected communities across the United States, the epidemic was blamed on Italian immigrants in New York City tenements. The anti-immigrant sentiment was complemented by scientists' beliefs that the polio virus was carried by flies, which seemed to flourish among the "dirty" and "unhealthy" immigrant population.
Public health officials responded to the outbreak by quarantining victims and barring children under age sixteen from public places. They also enacted strict sanitation policies in the tenement housing projects occupied by immigrants. The obsession with eradicating filth -- and hopefully polio along with it -- led New York City officials to begin dumping four million gallons of water on the city's streets a day.
Public service campaigns encouraged people to "clean up and keep clean," but, ironically, it was increased sanitation efforts that had spurred the 1916 outbreak. Newborns and infants had been protected by their mother's antibodies; with an improvement in sanitary conditions, however, exposure in the early months of life declined and older children began to contract polio.
Over 20,000 people survived the 1916 epidemic only to find themselves members of a society afraid of them and their disabilities. The names of the institutions which cared for polio patients strongly reflect society's attitudes towards them: the Home for the Incurables, the New York Society for the Ruptured and Crippled, and the Home for the Destitute Crippled Children. As institutions filled to capacity, polio victims found themselves relegated to back rooms.
The persistence of polio in the succeeding decades fundamentally altered this "out-of-sight, out-of-mind" perception. The random way in which polio struck, across class and color lines, made it harder to ignore the disease and blame the victim for their condition. Society continued to fear the disease, but it ceased to fear polio's victims.
The film uses FDR's life and struggle with polio as a means to capture the overall meaning of polio in the 1920s, 30s, 40s. Attitudes began to change when after Roosevelt acquired the disease in 1921 while visiting a Boy Scout camp. That Roosevelt -- a rich, white adult -- could contract polio challenged widespread notions that it was a disease of poor and immigrant classes.
FDR's public persona also helped recast society's ideas about polio sufferers in general. Because knowledge of the extent of FDRþs disability was carefully managed, the public came to embrace the idea that someday victims of polio would leave behind their wheelchairs and become "normal" again. Putting a good face on disability -- which ultimately came to manifest itself in the smiling March of Dimes poster child -- provided the American public with something to rally around.
Roosevelt also directly shaped the private sector's response. The Warm Springs Foundation, created by FDR, provided treatment and rehabilitation for polio sufferers free-of-charge. The treatments developed at the Georgia spa helped victims become more self- sufficient. Annual Birthday Balls across the country raised money for research, education, and local care. The National Foundation for Infantile Paralysis, headed by FDR's law partner Basil O'Connor, and its fundraising arm, the March of Dimes, evolved into a massive grassroots effort. Under O'Connor's direction, the foundation became the largest, most successful private charity in history.
Noticeably absent from the fight against polio was the Federal government: it had no role in the research, treatment, or education about the polio vaccines. Fighting polio was purely a private initiative.
The National Foundation launched a series of unprecedented fund-raising campaigns in the late 1930s and 1940s that combined the fear of contracting the disease with the hope that it would soon be conquered. Spurred on by movie stars, politicians, and heartbreak stories, the public embraced the fight against polio. Even at the height of World War II, Americans continued to send in their dimes. But by joining the fight, the public also expected a cure. And fast. The foundation pumped millions of dollars into research, but they couldn't control the fact that research takes time.
Medical science was no further in understanding polio than it was in 1916. A series of unsuccessful vaccination experiments had left children dead or with a permanent disability. These failures caused doctors and scientists to question even the feasibility of creating a polio vaccine.
The explosion of scientific discovery in the late 1940s and early 1950s finally gave polio research the impetus it needed. After three years of tedious and repetitious work, scientists determined there was not one, but three strains of polio. They also learned that the virus travelled through the body via the blood stream, rather than the nervous system. These discoveries, along with improved techniques for growing disease cultures in the laboratory, made finding a polio vaccine possible.
Two men, Albert Sabin and Jonas Salk, eventually took center stage in the race to find vaccine. Interested in the behavior of viruses, Sabin began to work on the puzzle of how polio worked its way through the body. As early as 1935 he grew the polio virus in live nerve tissue. Sabin's work with viruses convinced him that the ultimate cure for polio lay in the development of a live-virus vaccine. A live-virus vaccine would provide immunity by giving people a mild case of polio, allowing them to develop long-term immunity to the more virulent forms. If they pass on the virus, they transfer a weakened form that the average immune system can defend against, ultimately preventing the spread of polio by immunizing the whole community.
Jonas Salk, an immunologist who had successfully tested a killed-virus influenza vaccine, came to the problem of polio in the mid-1940s. Salk intended to develop a killed-virus polio vaccine providing immunity on an individual basis.
The live virus vaccine was clearly the vaccination of choice, but Salk's vaccination was available earlier and O'Connor was desperate to head off the next epidemic. By the 1950s, polio was striking 40,000 people a year, with the largest epidemic hitting in 1952 with 57,879 cases and 3,145 deaths. Using Salk's vaccination appeared to offer an immediate solution. "The bottom line is that Salk saw a short road to a problem that nobody else saw," said Seavey. "There is a question there, maybe not of great scientific discovery, but of intuition."
After testing the killed-virus vaccine on two control groups and his own children, Salk declared it ready for public trials -- all paid for and directed by the National Foundation. The Federal government was nowhere in sight. "That's what the story of the March of Dimes is about and what polio research is all about," notes Seavey. "It's not about the right solution, but making sure that 52,000 children were not afflicted the following year." In the spring of 1954, 1,830,000 children, called "polio pioneers," rolled up their sleeves as 20,000 doctors, 40,000 nurses, 50,000 teachers, and 200,000 volunteers coordinated the largest field trial in history. A year later on the tenth anniversary of Roosevelt's death, Salk's vaccine was declared safe and effective. Salk became a national hero and the creation of the vaccine was regarded as a triumph of the American system and her scientific know-how.
The government granted licenses for the commercial production of the vaccine, but the threat from polio was not over. Two weeks after the Salk vaccine was declared safe, it turned out that a bad batch of the vaccine hastily prepared by the Cutter Laboratories in California had given five children polio. By the end of what came to be known as the "Cutter Incident," 260 polio cases were reported in twenty-five states, resulting in eleven deaths. Americans had feared polio, now they feared the cure. A massive public relations campaign was launched, this one downplaying the incident and encouraging everyone under forty to be vaccinated. By 1956, more than 45 million Americans had received at least one of the three shots needed for immunity.
While Salk seemed to save the country from the grips of polio, Sabin continued his work on the live-virus vaccination, undertaking a series of successful field trials in the Soviet Union and Eastern Europe in the late 1950s. Sabin's success launched an intense public debate about the usefulness of each of the vaccines. In June 1961, the American Medical Association settled the issue with an unprecedented move: It endorsed the use of Sabin's vaccine before American field trials had even began. Now, most babies begin receiving the Sabin vaccine at eight weeks of age.
The history of polio in America makes for a compelling narrative, but the heart of the film comes from stories told by polio victims and their families. These scenes appear in startling color, unlike the rest of the film, which is black and white. Seavey has placed her þcharacters,þ as she refers to them, on a gray sound stage with a large photographic image carefully selected to reflect the person's battle with polio behind them. As Stanley Lipshultz talks, a shot of him as a March of Dimes poster child hangs behind him. This technique gives the viewer subtle visual clues to the stories unfolding before them.
Tapping into post-polio networks and using oral history collections, Seavey and her team interviewed hundreds of "polio people" in order to find the right "characters" for the film. They also went back to children's hospitals in regions where polio epidemics hit hardest and asked for help in finding doctors who attended the polio patients. From those interviews, they got the names of more sufferers. "It had to feel like it happened all over America" said Seavey. She rejected the idea of using famous people who had polio, like Mia Farrow and Alan Alda, in favor of what Seavey calls "real people" -- the person who might have lived down the street.
Seavey also tracked down people who appeared in the 1950s newsreels about polio, of which the DeMars family is one. After seeing a 1952 newsreel which chronicled how seven people in a nine member family in California were struck with polio, Seavey decided to try and find the family. "We knew that they were in Van Nuys in 1952 and we just started calling California," said Seavey. "We found out that their name was DeMars and we called every DeMars in the phonebook in LA until we found Donnie DeMars." Seavey and her crew hosted a big family reunion and brought the family together onscreen. "They had never talked about their polio before that," said Seavey.
The experience of the DeMars family was quite common and Seavey found out very quickly that many of her film's "characters" had repressed much of their pain and anger. "I think that every person cried. At some points I felt like a torturer," she said. "I think they dug very deep inside at a lot of repressed memory. When they did begin to break down, we'd turn the camera off and talk with them about their hairdo or whatever else. I just felt that it was important to leave these people with a tremendous amount of dignity and I think we did that."
Using "real people" comes with its own set of risks though. Every polio survivor has a story to tell, but whether they can tell it on film is another matter. "You have to make those people work on camera," said Seavey. "We shot film instead of video, which was very expensive, so I was even more hesitant to put somebody in front of the camera if it might not work. We took a few risks."
Marilynne Rogers was one of those risks. From the confines of her iron lung, Rogers recounts what it was like to be a young girl with polio in the early 1950s, offering some of the most compelling footage in documentary. Rogers has been in and out of an iron lung since she was a little girl, but when Seavey travelled to Minnesota to interview Rogers, a cold had forced Rogers back into the iron lung. At first Rogers was adamant about not appearing on-camera while in the lung. "Whether she was in or out of the lung was irrelevant to me. She's just amazingly articulate and has lead a very desperate life because of this disease." Rogers eventually changed her mind. "I think ultimately she came and she trusted me because she had never told her story before," said Seavey.
The film ends not with the story of Sabin's persistence, but with a look at polio in present-day India. "I think that it's important to know that we are protected," said Seavey, "but polio still lives and the question of how polio affects society is still very much present." Seavey ultimately hopes that people will have a better understanding of how society responds to disease and its victims. "I hope that we come to some understanding about it and realize that it's not just happening to them but to all of us."
Seavy also harbors one other wish for the film: she hopes that it will scare people into having their children vaccinated. "I had a feeling a long time ago that if you see this film, you should remember was epidemics are like and if you've got any question in your mind about vaccinating your children against disease, let this warn you that you should have no questions in your mind. We are very privileged."