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.”11 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.12 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.”13
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.14
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.15
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.”16 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.17
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.18
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.19
Partially designed by Roosevelt, the facilities at Warm Springs were an early example of architectural accessibility—built on what is now called universal design prin
ciples 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).20
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.21 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.”22 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.23
Doctors routinely encouraged parents to institutionalize their children with mental retardation in the postwar period, and at their encouragement many parents never mentioned or acknowledged such children again. Physicians and psychologists warned parents that the immense needs of such a child would ruin marriages and destroy the lives of other children in the household. Many parents followed this advice. The famed child psychoanalyst Erik Erickson and his wife, Joan, institutionalized their child after he was born, telling their other children that he had died at birth.24
Despite this incredible social pressure, and the dire predictions of medical professionals, some parents began to organize and advocate on behalf of their children and their families—rejecting the social stigma associated with cognitive disabilities.25 Parents, in essence, came out of the closet and brought national attention to the lack of appropriate educational options, living options, and family support. In 1950 author Pearl Buck, the only female ever to receive the Pulitzer Prize and the Nobel Prize, published The Child Who Never Grew, about her daughter Carol. Buck presented Carol not as shameful but as an innocent and joyful child. Similarly, in 1953 television and movie star and evangelical Christian Dale Evans published Angel Unaware—about her cognitively disabled daughter Robin, who had died at two years of age. Robin, she said, was not a punishment: instead, she was a gift from God, sent to “strengthen us spiritually and to draw us closer together in the knowledge and love and fellowship of God.” Eugenicist claims that cognitive disabilities represented defective family genes were even more publicly challenged when the Kennedy family embraced the cause of mental retardation and (at least some of them) acknowledged Rosemarie Kennedy, the cognitively disabled sister of President Kennedy. In 1962 Eunice Shriver Kennedy, another Kennedy sister, wrote in The Saturday Evening Post, “Mental retardation can happen in any family. It has happened in the families of the poor and the rich, of governors, senators, Nobel prizewinners, doctors, lawyers, writers, men of genius, presidents of corporations—the president of the United States.”26
Parent groups in many states, most often energized and staffed by volunteer mothers, eventually merged to form the National Association for Retarded Children in 1952. By 1964 their membership exceeded one hundred thousand people—nearly all of them parents. Minnesota mothers, like many mothers across the nation, became professional and astute lobbyists: they befriended the female secretaries of the male legislators as they sought sway, and in 1963 took legislative wives on a tour of state hospitals. In 1974 the organization changed its name to become the National Association for Retarded Citizens, attempting to reject the assumption that people with cognitive disabilities were perpetual children. In 1992 the national organization became simply The Arc, in an effort to recognize the organizational leadership and involvement of those individuals with developmental and intellectual disabilities as well as to rid itself of the term “mental retardation.”27
Parent advocate groups changed the institutional and educational landscapes of people with cognitive disabilities, as did a number of sensationalized media exposés. Stories that brought to light the horrific conditions at institutions for people with disabilities were not new. Dorothea Dix had used a similar strategy in the 1840s and 1850s. Journalist Nellie Bly had kicked off her career by deceiving her way into the infamous insane asylum of Blackwell’s Island and then writing about it in Ten Days in a Madhouse (1888).
In the mid- to late 1940s, activists—many of them accidental activists—shone a spotlight on the horrific conditions, squalidness, and brutality within American institutions for people with psychiatric and intellectual disabilities. The onset of World War II had stripped such institutions of much of their staff. Many men went to war, and those who did not, as well as female employees, often found better-paying employment, with better working conditions, in wartime defense plants. At the same time, the federal government sought placements for the nearly twelve thousand World War II conscientious objectors assigned to public service. Near
ly three thousand were assigned to state mental hospitals and training schools containing an array of people with cognitive and developmental disabilities.
As disability scholar Steven Taylor has characterized it, their work was hard: “Ten hour days were commonplace. As few as 1 to 3 men were in charge of as many as 350 patients, including those individuals with the most severe disabilities.” The common use of physical restraints and brutality challenged “the humanitarian and pacifist beliefs” of many of the conscientious objectors. Shaken by their experiences and determined to bring about social change, the young men brought institutional conditions to the attention of local media, community leaders, academics, and prominent Americans in popular culture and politics. Their experiences were documented in a 1947 book, Out of Sight, Out of Mind, compiled by Frank Leon Wright; it was praised by Eleanor Roosevelt in her “My Day” newspaper column. With photographs and beautiful prose, it forced attention to the brutality, cruelty, neglect, and disdain that were the everyday experience of too many institutionalized Americans.28
Christmas in Purgatory (1966) became an even more successful exposé. Burton Blatt, a professor at Boston University, and his friend, photographer Fred Kaplan, visited four large New England state institutions for people with psychiatric and cognitive disabilities, after Senator Robert Kennedy’s unexpected but highly publicized visit to two New York institutions in 1965. The pair secretly took pictures and published them as a photographic exposé. The stark black-and-white images of Christmas in Purgatory remain disturbing to this day: naked or half-dressed individuals in crowded and barren environments, the common use of physical restraints simply to relieve staff of care obligations, and the jarringly casual disregard for fellow human beings. Blatt hoped for reform, especially after being invited to address the Massachusetts legislature convened at one of the state schools.29
A Disability History of the United States Page 16
