A Disability History of the United States (21 page)

Louis Uhlberg was a fortunate man during the Depression. He worked as a printer at a New York newspaper for over forty years. Though money was tight, and though he sometimes feared the loss of his job, he remained employed, courted, married, and had two children in the midst of the national economic crisis. His son Myron, then a young boy, remembered passing a man, old and dirty, sitting on a curb, who had whispered to Myron that he was hungry. The father asked his hearing son what the older man had said, and then gave the older man some apples and a loaf of bread. Louis instructed his son, “Tell him I’m sorry . . . but tell him things are bound to get better.” The father and son then continued their walk home.
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Uhlberg undoubtedly knew of the difficulties he would face if he were to lose his job.

Like other people with disabilities who sought employment through the Work Projects Administration and state or local work relief programs, deaf people found themselves categorically classified as “unemployable”—regardless of prior employment, vocational training, the conditions of their bodies, or educational background. As part of the New Deal developed by President Roosevelt as a solution to the economic problems of the Great Depression, the Work Projects Administration employed millions of unemployed Americans in the construction of public buildings and roads, literacy projects, cultural programs of art and music, as well as social services. WPA programs, however, as with nearly all other work relief programs, refused to hire people with disabilities. Just as the League of the Physically Handicapped had done, the National Association of the Deaf battled this. While exceptions were not made for most people with disabilities, in 1938 deaf workers became “employable” per WPA regulations. By 1939, however, policies shifted and deaf workers once again became “unemployable.”
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Most Deaf organizations and workers did not reject the categorization of people with disabilities as “unemployable,” but insisted that deaf people were not disabled people. Since the organization of the first institutions for and of deaf people in the United States, they had emphasized their separateness as a linguistic community, their normality, and their full citizenship potential. Already marginalized they sought to distinguish themselves from those they considered
the truly disabled.
Some feared that hearing individuals within a larger disability community would seek to dominate if they made cross-disability alliances. Some deaf leaders, as historian Susan Burch has written, “thought they could reject the stigma of disability” by “rejecting overtures from disabled activists.”
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Deaf leaders thus rejected alliances with disabled activists such as the League of the Physically Handicapped who challenged the employment discrimination within New Deal employment programs.

For deaf African Americans, if they were familiar with this argument it must have seemed like privileged folly. Like white deaf Americans, deaf African Americans used the relationships and institutional resources of schools to foster community. The NFSD, the NAD, and southern state associations remained white by policy. Many western and northern schools for deaf people were integrated, but southern schools resoundingly were not. Most had substandard facilities due to substandard state or local funding. Trained white teachers rarely went to black schools; black teachers generally had little training in deaf education because of segregation in deaf schools. Because of this the students and staff at many African American deaf schools created their own unique sign language dialects, different from the standardized American Sign Language and sometimes even from that of neighboring state schools for African American deaf students.
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Such linguistic developments were of necessity, but contributed to and continued racial segregation.

Southern legislatures tended to place African American deaf and blind students together: for example, the North Carolina State School for the Colored Deaf and Blind; Texas’s Institute for Deaf, Dumb and Blind Colored Youth; the Alabama School for the Negro Deaf and Blind; or the Virginia State School for Colored Deaf and Blind. When deafblind activist Helen Keller testified before Congress about the importance of expanding the Social Security Act in 1944, she emphasized discriminatory state funding and the ways in which racism and ableism intersected to limit opportunities. “In my travels up and down the continent,” she testified, “I have visited their shabby school buildings and witnessed their pathetic struggles against want. I have been shocked by the meagerness of their education, lack of proper medical care and the discrimination which limits their employment chances.” It was a disgrace, she went on, “that in this great wealthy land such injustice should exist to men and women of a different race—and blind at that! It is imperative that colored people without sight be granted financial aid worthy of their human dignity and courage in the face of fearful obstacles.”
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The economic inequalities of race in the United States meant that poor medical care sometimes created disability—and the Depression exacerbated those inequalities. Henrietta Evers, the youngest of eight children born to a poor African American farming family in Georgia in 1929, contracted polio at the age of four. In an era when news of polio spread fast and sent fear throughout entire communities, Evers remembered hearing of a white girl in the same county who had also acquired polio but who had the privilege of hospital care. Evers received care from a country doctor of questionable repute. “My leg had drawn up, it was bending at the knee and I couldn’t bend it out. So, what he [the doctor] did, he just takes it, and pulls the leg out, and breaks all the tendons and all the ligaments. It did hurt! Oh, my did it hurt. You could hear me holler all over Georgia. I remember—I will never forget.” A family friend in Philadelphia took Evers in, all of her family hoping she could find better medical care. In Philadelphia, Evers received rehabilitation treatment, surgery, and better care, but the damage done by an inadequate doctor remained.
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The changing history of disability—its intersection with class, race, and rights activism—is particularly evident in the lives of polio survivors. Polio hit the United States very late in the nineteenth century. The 1916 epidemic, the first large epidemic, included an estimated twenty-seven thousand cases and six thousand deaths. Polio, also called infantile paralysis and poliomyelitis, is a virus that attacks the central nervous system. Now eradicated in the United States, polio once resulted in widespread fears and quarantines. Those who survived polio sometimes acquired significant physical disability, largely but not exclusively among children. Children aged five to nine were hit the hardest. When news spread of polio’s arrival in a community, playgrounds emptied as parents attempted to protect their children. During the 1916 epidemic both Pennsylvania state officials and Paterson, New Jersey, civic officials blocked the roads in an attempt to deny entry to fleeing New Yorkers—the region hit with the highest number of cases.
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For children, polio often meant removal from their family household. For Henrietta Evers, polio meant moving to the home of a family friend in Philadelphia in order to escape the limited opportunities available to a disabled African American child in rural Georgia. For rural Minnesotan Richard Maus, a white farm boy, polio meant admittance to the Gillette State Hospital for Crippled Children in St. Paul, Minnesota, at the age of six months, in 1939. During his 314-day stay, his parents could see him only through the glass wall of the ward. Before he was fifteen, Maus had been “admitted to Gillette seven times, spent 938 days in the hospital, and underwent sixteen operations.”
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Maintaining family ties and emotional support in this context was tremendously difficult.

For children with polio such as Maus, the hospital or rehabilitation facility thus became a community of necessity that was determined by place. Often ostracized by others when they were home—both from fear of the disease and from discomfort with disability—children with polio built important emotional networks during their hospitalization in wards of four to twenty children or adolescents. Spitball battles, surreptitious wheelchair races, parties, flirting, and nighttime pillow fights were common. Arvid Schwartz remembered he and his friends making so much noise at night that the boys would “catch hell” from the nurses. “But really,” he went on, “what could they do to us?” In a marvelous twist on the old-boy network, historian and scholar Sucheng Chan made important professional connections once she became an adult based on the relationship she had built decades earlier with her childhood friend Janet Frandendese, both of them polio survivors, as they spent hours riding back and forth to school on the bus for kids with physical disabilities.
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One of the most famous polio-rehabilitation centers is the Roosevelt Warm Springs Institute for Rehabilitation in Warm Springs, Georgia. Franklin Delano Roosevelt founded Warm Springs in 1926 and spent significant time there between first visiting the thermal springs in 1924 and his death at his nearby cottage in 1945. For FDR, who became governor of New York in 1928 and president in 1932, Warm Springs was a physical and emotional retreat. Roosevelt had contracted polio in 1921 and was paralyzed from the waist down. While many knew of his past with polio, he, the media, and those around him colluded in hiding the extent of his disability. At Warm Springs, Roosevelt felt comfortable acknowledging and revealing his disability. There he made no effort to hide his wheelchair, his paralyzed legs, and his reliance on personal assistants.
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In 1938 Roosevelt and others affiliated with Warm Springs founded the National Foundation for Infantile Paralysis. The NFIP, which later became known as the March of Dimes, raised substantial funds for polio prevention and treatment research, including the treatments advocated by Sister Elizabeth Kenny and the development of polio vaccines. It also provided braces, wheelchairs, iron lungs, and other assistive devices to those unable to purchase them on their own.
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Partially designed by Roosevelt, the facilities at Warm Springs were an early example of architectural accessibility—built on what is now called universal design principles and easily accessible to Roosevelt and other wheelchair users. The thermal hot springs eased bodies, but most important was the rich community enabled by Warm Springs. At Warm Springs no one stared. At Warm Springs wheelchairs and assistive devices were the routine. Lifelong friends and lovers emerged, as did lifelong professional and economic ties.

The ideology, experiences, and institutions of polio were racialized, however. Warm Springs was a retreat, but a retreat for “an elite group of the disabled.” African Americans served as waiters and cleaning staff at Warm Springs but were not welcome as users of the health facilities or employed as doctors, nurses, or administrators. Indeed, through the early twentieth century, medical and rehabilitation personnel throughout the country had justified the exclusion of African Americans from their institutions by erroneously insisting that blacks, and sometimes also Asian Americans, were not susceptible to polio. Black civil rights leaders first drew attention to segregation at Warm Springs during Roosevelt’s 1936 reelection campaign. Civil rights leaders praised the 1944 March of Dimes funding of a nonsegregated polio clinic during a fierce epidemic in North Carolina but wondered “why they can’t do the same thing year round.” The March of Dimes funded a polio center at the Tuskegee Institute in 1939, and Warm Springs desegregated in 1945 (at the personal insistence of Eleanor Roosevelt).
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Yet race continued to shape experiences of polio and disability. Wilma Rudolph, the 1960 multiple Olympic gold medal winner, remembered having to ride a segregated bus more than fifty miles to be treated for her polio when she was a child in Tennessee. In May 1954, the very month that the Supreme Court issued its decision in
Brown v. Board of Education,
black children had to leave their schools and stand in lines outside white public schools in order to receive the polio vaccine developed by Jonas Salk. The restrooms and water fountains inside, of course, were forbidden to those children. In 1964, when white and black college students arrived in Mississippi as Freedom Riders, one young middle-class white man, fresh from New England, was appalled to meet a polio survivor who made her livelihood by picking cotton while on her knees—unable to stand as other cotton pickers did. And that same year, as state patrolmen forced others to beat civil rights activist and Mississippi sharecropper Fannie Lou Hamer with a tire jack after she had dared to attend a voter-registration workshop, she sought to protect the left side of her body, where she still felt the effects of the polio she had had as a six year old.
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The intersection of disability and race could make economic and political survival extremely difficult.

Surviving polio also, however, often provoked activism. Many of the educational reforms that provided better education for children with disabilities came about at the insistence of the parents of polio survivors. Access to higher education came about due to the stubbornness and confidence of the young adults who had survived polio as children and wanted full lives as adults with disabilities. For example, in 1958, when Anne Emerman, the future director of the New York Mayor’s Office for People with Disabilities, said that she wanted to attend college, a social worker told the white wheelchair user that such dreams were delusional. “This idea is a fantasy,” Emerman had been warned, “and fantasies can lead to mental illness.”
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Emerman went anyway. More equitable access to all aspects of civic life mattered to people with disabilities. They did not want to be shunned.

In the 1940s New Jersey housewife Laura Blossfield was sadly accustomed to her isolation. Like many other parents of children considered mentally retarded, her life had become “a social island.” But she also knew that she was not alone. In October 1946 she placed a notice in her local paper, seeking out parents in similar circumstances. “Each parent,” she hoped, “can ultimately help his own child by doing something to help all children similarly affected . . . Therefore, I suggest an organization for all parents of mentally retarded children[, one that] may well prove to be the first chapter in a nationwide organization.” She and two others soon formed the New Jersey Parents Group for Retarded Children.
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