The classic fairy tales of Hans Christian Anderson and the Brothers Grimm are testaments to the enduring fascinations and fears that children have shared across the generations. The Grimm's “Hansel and Gretel” and “Cinderella” and Anderson's “Ugly Ducking” and “The Emperor's New Clothes” continue to entertain children and to reassure them of the ultimate conquest of good over evil. There are other joys and anxieties of childhood, however, that are more generation-specific. For the children of the 1990s, for example, school violence and the horror of AIDS had an impact unimaginable to previous generations. The decade of the 1950s, on the contrary, is often portrayed as a period of idyllic childhood. What is forgotten in the nostalgic accounts of this period, however, is that along with Davey Crocket and coonskin caps, the children of the 1950s were taught to crouch under school desks in case of a Russian nuclear attack. Another nightmare for the children of that generation was polio.
Polio, commonly called infantile paralysis because it most frequently affected children, reached epidemic proportions in the early 1950s. This viral disease paralyzed and killed thousands of children each year. Images of patients and the “iron lungs” used to enable them to breathe terrified both children and their parents. Although the means by which the disease was transmitted was uncertain, swimming pools were closed, public gatherings were avoided, and school cancellations were common during the worst outbreaks (Klein, 1972).
Then, in early April 1955, newspaper headlines announced that a safe and effective polio vaccine had been developed by Dr. Jonas Salk. Before the end of that month, thousands of children were vaccinated against polio. By 1961, an oral vaccine for polio had been developed by Dr. Albert Sabin. In 1971, only one case of polio was documented in the United States (Chase, 1982).
Polio: Memories of the Senior Author
My personal reflections on the terrors of polio are embodied in three waves of thoughts and feelings. My first memory is of the death of a boy in my neighborhood. News that Billy had polio came as a shock to the community. He died within days. My parents' fears could not be concealed even from a 6-year-old. I accepted their restrictions willingly and played alone in my own backyard. I was terrified.
My second recollection is of standing in line for my first polio shot. I watched as some of my friends and classmates were inoculated, dreading my turn. That scene was to be repeated twice before the series of vaccinations was complete. The next time I was vaccinated was as an adult, this time with the Sabin technique. The sugar cube with a dot of vaccine was much more pleasant than the needle.
My final reflection on polio concerns the role of people with mental retardation in the development of the polio vaccine. I have only recently become aware of their largely involuntary and exploitive participation in the research that led to the availability of the vaccine. For my childhood peers and myself, the eradication of polio was a miracle. For people with mental retardation and their advocates, the development of the vaccine is a disturbing saga. It is also a testament to the degree to which the lives of people with mental retardation were devalued through most of the last century. Reviewing the story may encourage us to think carefully as we look at the meaning of their lives in the new century.
The Salk Vaccine and “Institutionalized” Research
Vaccination is accomplished by introducing a tiny amount of a virus into the body of the vaccinee. The immune system of the vaccinated person responds by producing antibodies. The vaccinee is thus protected against the “wild” form of the virus and the disease it causes. Vaccines may be created with either a weakened live virus or a dead virus. In general, both weakened and dead viruses produce antibodies but not the disease. Given the unique characteristics of a particular disease, however, either a live or a dead virus vaccine may not prove to be preventative. More important, some vaccines may actually produce the disease that is being targeted for immunity. Research and trials are important, therefore, in producing a safe yet effective vaccine (Hooper, 1999).
Medical research is usually an evolutionary process. The work of one scientist provides a platform or stimulus for the research of the next. One of the pioneers in polio vaccine research was Howard Howe of Johns Hopkins University. In 1952, Howe produced a polio vaccine using a dead virus that he tested on chimpanzees. It seemed to be safe and to produce antibodies against polio. Howe then tested the vaccine on children at the Rosewood Training School in Owings Mills, Maryland. He described these children as “low grade idiots or imbeciles with congenital hydrocephalus, microcephaly, or cerebral palsy” (Howe, 1952, p. 265). In reporting on the response to the vaccine, Howe wrote, “Both children under five years of age and chimpanzees develop readily demonstrative neutralizing antibodies . . . following the injection of small quantities of . . . formalin inactivated poliomyelitis virus” (p. 275).
Jonas Salk may have been inspired or nudged by Howe's work to move ahead more quickly with his own work on a vaccine for polio. He might also have been influenced by Howe's research in his selection of subjects for trial vaccinations. Salk had tried his vaccine earlier on animals, and it appeared to be safe and effective. In a 1952 article, he described testing his vaccine at the D.T. Watson Home for Crippled Children in Pennsylvania. Some of the children he vaccinated had already been disabled by polio and, therefore, had some level of immunity. Others had no immunity at all to the disease. In both groups, Salk found that his vaccine promoted the development of antibodies (Chase, 1982).
Salk continued his research at the Polk State School in Pennsylvania, where he vaccinated institutionalized children. The antibody production stimulated by the vaccine in this group was also encouraging. He was relieved by the fact that none of the children contracted polio, a risk associated with the vaccine because some undetectable amount of virus might not have been killed. Salk was quoted as saying, “When you inoculate children with polio vaccine, you don't sleep well for two or three months” (Chase, 1982, p. 296).
Feeding Live Polio Virus to Children With Mental Retardation
The fact that children and adults with mental retardation were the subjects of choice for medical research at the time of Salk's work on polio is made even more clear through the trials that led to the development of a live virus vaccine. Although the name of Albert Sabin is most often associated with this vaccine, a number of scientists were involved in its development. In fact, a competition developed between researchers for the discovery of the most reliable and effective oral vaccine. Sabin won the competition, but the race could have been won by Hilary Koprowski.
The quest for a reliable live virus vaccine was stimulated by two factors. One, a live virus vaccine could be administered orally rather than being injected. This would make it less expensive and easier to immunize large numbers of people. Second, Salk's dead virus vaccine had not proven to be as effective as originally thought. There were cases where the dead virus did not create immunity. There were also cases where the techniques for killing the virus had not been totally effective. Live virus that remained in the vaccine in these cases had caused polio in some of the people injected with it.
Like Salk and Sabin, H. Koprowski had set out on a personal mission to eradicate polio. Even before the successful development of Salk's vaccine, Koprowski was testing weakened, but live, strains of polio virus. Although he tested the vaccine in monkeys, Koprowski revealed at a 1951 meeting that he had administered a live virus polio vaccine to human subjects.
In his report of feeding the virus to 20 children with mental retardation at Letchworth Village in New York, H. Koprowski, Norton, and Jervis (1952) explained that this decision to administer the virus to humans for the first time was based on
gaps in knowledge concerning the mechanisms of infection and immunity in poliomyelitis . . . due to the fact that, as far as is known, human beings have never been exposed to actual administrations of living poliomyelitis virus for clinical trial purposes (p. 108).
Klein (1972) reported in his description of the trial of the vaccine that H. Koprowski requested permission of the New York State Department of Health to test it on the children at Letchworth. In fact, Koprowski did not request permission. In her later account of the trials, I. Koprowski (1997) provided her husband's recollections:
I realized then that I would never get official permission from the State of New York. Therefore, we asked permission from the parents of those children. The parents gave us permission to feed vaccine to their children. On February 17, 1950, the first human subject was immunized with poliomyelitis virus by drinking an emulsion. (p. 298)
Koprowski described the vaccinees at Letchworth Village as “volunteers.” In fact, “Volunteer No. 1” was a 6-year-old boy with severe disabilities who had to be fed the vaccine through a stomach tube. The other 19 “volunteers” had similar multiple disabilities. There was no mention in the original report of parental permission having been sought or granted (H. Koprowski et al., 1952).
Fortunately, none of the children at Letchworth developed polio from swallowing the live virus vaccine. Koprowski reported that they all developed antibodies. It is clear, however, that he gambled with the lives of those children. The vaccine strand had been problematic in tests with monkeys. In those earlier trials, in fact, half of the subjects were paralyzed and a quarter died (Hooper, 1999).
In discussing his memories of the meeting where he had first disclosed his Letchworth Village research, H. Koprowski referred to Albert Sabin's reaction:
Sabin was quite vociferous at the meeting. . . . he questioned my daring. How did I dare to feed children live polio virus. I replied that somebody had to take this step. Well, he turned round and round saying, “How do you dare to use live virus on children? You are not sure about this, you are not sure about that, you may have caused an epidemic. (I. Koprowski, 1997, p. 299)
Koprowski was also criticized in the medical journal Lancet for the lack of evidence that he had obtained the informed consent of his subjects.
Koprowski et al.  tell us in a footnote that for obvious reasons the age, sex, and physical status of each volunteer are not mentioned. The reasons must be more obvious to the authors than to the readers, who can only guess, from the methods used for feeding the virus, that the volunteers were very young and that the volunteering was done by their parents. One of the reasons for the richness of the English language is that the meaning of some words is continually changing. Such a word is “volunteer.” We may yet read in a scientific journal that an experiment was carried out with 20 volunteer mice, and that 20 other mice volunteered as controls. (Poliomyelitis, 1952, p. 552)
This criticism, however, does not seem to have deterred Koprowski. Subsequent investigations of the records from a conference on the “Biology of Poliomyelitis” indicate that several further trials of live virus vaccine were very likely conducted at Letchworth but were not published in the mainstream medical literature (Hooper, 1999).
Koprowski and the Children of Sonoma
It is certain, however, that Koprowski conducted his vaccine research on children with mental retardation elsewhere. In July 1952, Koprowski tested his oral vaccine on 61 children at Sonoma State Hospital in California: All of them had mental retardation as their primary diagnosis. The children ranged in age from 8 months to 8 years. This time Koprowski made certain that he had formal permission to conduct his research. With the help of physicians at Sonoma, the appropriate clearance was swiftly obtained from California authorities. The trial was considered a success when 52 of the 61 children showed an increase in antibody levels to polio.
In the course of the vaccine research, Koprowski and his colleagues (H. Koprowski et al., 1956) conducted another study. This experiment is particularly revealing of the attitudes toward children with mental retardation that were prevalent during the research. Koprowski reported that a group of 6 children who had been fed the vaccine were, as a result, excreting virus in their stools. He described them as being kept “in very intimate contact” with another 8 children who lacked antibodies. In fact, the children (who were incontinent) were allowed to play together 3 hours a day on a plastic mat, which, although washed down to remove gross soils, was deliberately not disinfected. In the course of this experiment, 3 of the unvaccinated children became infected with the virus. None of the nurses, however, developed antibodies. Koprowski reasoned that the nurses caring for the children took precautions against infection, wearing protective clothing and washing their hands after every contact with a child. He also concluded that the vaccine virus was not contagious “when the principles of simple personal hygiene are practiced” (p. 959). Again, the disregard for the children as human beings is evident in this report.
Koprowski continued his research on institutionalized populations, including other children with mental retardation and the infants of female prison inmates for several years. In 1957 and 1958, he enlarged his research to include thousands of children in Africa and Russia. His vaccine fell into disfavor, however, when polio cases in Northern Ireland were linked to his research there. Ultimately, Albert Sabin would win the oral vaccine race, and his form of live virus was adopted for use in the United States (Rogers, 1992).
Research and Mental Retardation: Other Cases
As disturbing as the history of the polio vaccine trials are, there are other examples of children and adults with mental retardation being used as devalued subjects in medical research. During the 1940s and through the 1950s, children and adults with mental retardation at Fernald State School were used in a scientific study conducted by the Massachusetts Institute of Technology on the nutritional effects of ingesting radioactive iron. Children who received permission from their parents to join the “Science Club” were fed oatmeal laced with the radiated metal (Higgins, 1998). From 1946 to 1952, over 125 children were exposed to radiation at the Fernald School in this manner (Allen, 1993a).
The Willowbrook State School was another setting in which the questionable use of persons with mental retardation in medical research occurred. The researchers who carried out the Willowbrook studies, conducted from the 1950s to the 1970s, sought to identify a vaccine for hepatitis. A research team systematically infected residents with varying strands of hepatitis, knowing that those children would develop the infectious disease (Grodin & Glantz, 1994).
The value placed on people with mental retardation by some researchers is evident in their choice of human subjects rather than animals. According to the Humane Society, institutionalized children have been used for research purposes because they are “cheaper than calves” (cited in Grodin & Glantz, 1994). During the polio trials, the cost of raising and keeping monkeys for experimental use was so high that doctors frequently sought human “volunteers.” Children were given an experimental vaccine after it had been tested on only 62 animals (Paul, 1971).
In the cases of the Fernald radiation studies and the Willowbrook hepatitis experiment, the validity of the parental consent obtained is questionable. According to the permission letter to the parents in the Fernald experiment, the benefits of the Science Club consisted of receiving an extra quart of milk each day, attendance at baseball games, and trips to the beach (Higgins, 1998). There was no mention in the parental consent letter of radiation experiments nor of the potential harm that could come to their children (Allen, 1993b).
Consent in the Willowbrook studies was also obtained in a questionable manner. Parents were asked for consent and promised that their children would be placed on a special ward with extra staff. The researchers failed to tell the parents that the special ward was for individuals infected with hepatitis (Grodin & Glantz, 1994).
Claiming a Place of Value: The Continuing Struggle
Jonas Salk won a victory over the polio epidemic. Albert Sabin won the race for an oral vaccine. Millions of people in the world benefited from these triumphs. It is critical, however, that we reflect on the struggle that continues for people with mental retardation in claiming their human worth in the eyes of their fellow human beings. Perhaps the sacrifice that these people have made for others will eventually be recognized and their value in society secured. Until then, their friends, families, and advocates cannot rest.
Authors: J. David Smith, EdD, Dean, and Alison L. Mitchell, MS, Graduate Assistant, School of Education and Human Services, Longwood College, 201 High St., Farmville, VA 23909.