Fully Alive
Page 4
If Descartes was the first to argue that reason was the most important human attribute, it was John Locke who made reason the bedrock of individual rights and political order. Locke, the celebrated philosopher whose writings helped set the stage for the American Revolution, articulated the rights of citizens in the new forms of government, freed from the tyranny of kings and religious authority figures. But he drew a hard line regarding people with intellectual disabilities. In Locke’s view, being human meant being capable of abstract thought. Thus, people with intellectual disabilities were subhuman “idiots,” incapable of morality and possessing no soul; as such, the state was not obligated to serve them, and practices such as infanticide were justified.
The ideas of European philosophers such as Locke and Descartes were carried to their logical ends in new social programs that made such dehumanization the foundation of policy and practice. These ideas found their way to the New World, where the first models of the twentieth-century institution emerged: “In 1752, with leadership from the physician Thomas Bond and Benjamin Franklin, the first general hospital was established in the American colonies in Philadelphia. Care for persons with mental illness was a major motive in the founding of this hospital.” Although the hospital’s founding petition contains benevolent language, its treatments for those with mental infirmities were anything but: dousing “alternately with warm and cold” water; shaving and blistering the scalp; bloodletting to induce loss of consciousness; purging the gastrointestinal tract; chaining to walls in basement cells; using gyrating machines and tranquilizer chairs. The first American mental asylum was built in 1773 in Virginia. A handful of other almshouses and asylums were scattered throughout the colonies and Mexico at the time, boasting similar methods of “treatment” and “care.”
Thankfully, institutions such as these did not gain widespread popularity until the mid-nineteenth century, at which time a social activist named Dorothea Dix began traveling across the country to inspect the living conditions and treatment of people with mental illness and disability. She was motivated by having witnessed the mistreatment of people with disabilities in her home state of Massachusetts. Her first report was published in 1843 and describes people confined “in cages, closets, cellars, stalls, pens! Chained, naked, beaten with rods, and lashed into obedience!… Irritation of body, produced by utter filth and exposure, incited [one woman] to the horrid process of tearing off her skin by inches.” For the next thirty years, Dix would advocate the establishment of “caring” institutions where people with disabilities and mental illnesses could be treated more humanely.
Her pleas would result in the construction of institutions across the United States and Europe, following a “moral treatment” philosophy that discouraged the kinds of coercion, punishment, and abuse she had described in her reports. But alas, it was a short-lived reprieve. By 1870 or so, economic woes were making it especially difficult to secure funding, and conditions in the institutions deteriorated rapidly. In addition, almost as soon as they were constructed, institutions were flooded with inmates from overflowing prisons, and severe overcrowding became the norm.
What then happened around the turn of the twentieth century was unprecedented. The years from around 1890 to 1950 were some of the darkest in all of Western history for people with mental illnesses or disabilities. Before then, “eugenics,” or the study of how to improve the human race by selective breeding, had never been more than a shadowy pseudoscience. But during the late 1800s and early 1900s, it garnered an enormous amount of public attention and support. Intelligence, the eugenicists insisted, was a hereditary biological attribute; its opposite, feeblemindedness, was also hereditary and therefore a menace to the human gene pool, although a controllable one. A feverish race-deterioration scare took hold of the Anglo-Saxon world. Respectable scientists on both sides of the Atlantic spoke with impunity of the impending racial disaster. Many were convinced that if they did not enforce responsible breeding, the Anglo-Saxon race would undergo an irreversible and devastating intellectual decline.
Low intelligence was understood to go hand in hand with criminality, addiction, welfare dependence, sexual license, and indiscriminate breeding. In fact, few eugenicists acknowledged any difference between what was then termed mental “deficiency” and other types of deviation from proper middle-class behavior. The eugenicists recast original sin itself as a biological defect that could be rooted out of humanity through selective breeding. The influential American psychiatrist Henry Goddard insisted in 1919 that “the chief determiner of human conduct is a unitary mental process which we call intelligence.” He and many others believed wholeheartedly that if you eliminated the unintelligent, you would thereby eliminate the sinners and criminals, and human society would evolve toward a utopia of bourgeois normalcy.
Great public energy followed the science in identifying the feebleminded to prevent them from procreating. In America (though not in Britain), legislators enacted compulsory sterilization laws with barely a murmur of protest from the public. Under these laws, more than sixty thousand “unfit” individuals were sterilized against their wills between 1907 and 1970. Eugenicists also pressed for involuntary institutionalization. “By legislative reform, we may segregate the worst types of the feeble-minded, the habitual criminal, and the hopeless pauper,” wrote William Cecil Dampier Whetham, a British scientist and fellow of the Royal Society, and his wife in 1909, “and thus weed out of our race the contaminating strains of worthless blood.” The Whethams then humbly expressed moral squeamishness at legislating anything harsher than involuntary confinement: “Beyond that point in this direction it would be unsafe to go, till we understand much more fully the principles of the science of inheritance.”
A popular 1916 film, The Black Stork, featured a prominent eugenicist, Harry Haiselden, who played himself in the movie. Haiselden was a leading physician who sought to educate the country about the threat of people with disabilities. In the film, he persuades a mother to refuse lifesaving surgery for her newborn with disabilities and let the baby die by explaining that the infant’s disabilities would result in a life of moral depravity and crime. In an act of heroic sacrifice and scientific triumph, the mother consents, and the film chronicles the baby’s slow death.
The film provoked an outpouring of letters and articles, praising its depiction of the need to remove undesirable “parasites” from society. The head of the Department of Sociology at Columbia University wrote, “The idiotic child should mercifully be allowed to die,” and a New York doctor further opined, “The day of the parasite, who eats his bread without earning it, will soon pass whether he be mentally or physically incompetent or not.” In 1932, the popular movie Freaks depicted the lives of sideshow performers, many with physical and mental disabilities, carrying this disclaimer at the beginning: “Never again will such a story be filmed, as science and teratology [the study of physiological abnormalities] are rapidly eliminating such blunders of nature from the world.”
In 1927, the Supreme Court joined the national discussion. In its decision in Buck v. Bell, the Court upheld compulsory sterilization of people with intellectual disabilities “for the protection and health of the state.” The plaintiff in the case, a teenager named Carrie Buck, had been handed off to a foster family after her mother was forcibly institutionalized with a diagnosis of “Mental Deficiency, Familial: Moron.” This foster family had Carrie herself institutionalized in 1924, after she gave birth to an illegitimate child at the age of seventeen. While a resident at the Virginia State Colony for Epileptics and Feeble Minded, the girl was sentenced to forced sterilization. In an eight-to-one decision, the court upheld the forced sterilization, accusing Carrie, her mother, and her young daughter of promiscuity and feeblemindedness. In his ruling, Chief Justice Oliver Wendell Holmes concluded, “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from conti
nuing their kind … Three generations of imbeciles are enough.” After the ruling, Carrie Buck was forcibly operated on and received a tubal ligation.
Years later, she was “paroled” from the Virginia State Colony for Epileptics and Feeble Minded and lived for decades employed as a domestic worker. She was known as an avid reader. Her lawyer in the case turned out to be a board member of the Virginia State Colony, who according to some reports was barely aware of the case even as it went to the Supreme Court. Carrie’s daughter, Vivian (the third-generation “imbecile”), died of measles as a child—the year after she was listed on her school’s honor roll. Later research showed that Carrie Buck had probably become pregnant as a result of rape by her foster mother’s nephew, and was institutionalized mainly to preserve the family’s reputation. She died in 1983.
A “blunder of nature,” an “imbecile,” a “parasite,” “enough.”
Perhaps the most painful wound of this history is the fact that it assumes the people affected by it had no inner lives, no capacity to feel the pain of humiliation, to understand the vicious ridicule, to fear the horrors of their treatment. But we know that they did—that they heard and felt and lived through it all. In one way or another, these human beings understood the fate awaiting them when they lined up to be imprisoned under the pretense of care; to be shuttled from place to place as if on a gurney to a morgue while still alive. “Blunders of nature,” “imbeciles,” “parasites,” “enough.” There can be no doubt that millions of children and adults heard these exact words used to describe them, that they saw the doctors coming and going with their tool kits of horrors, that they lived lives of terror and dread. The lockdowns, the abuse, the medical experiments, the electroshock therapies, the radioactive diets, the isolation rooms—all had victims who felt, feared, and suffered.
Decades later, the Brandeis sociologist of disability Irving Zola attempted to describe the extent to which he and others with disabilities had internalized the messages of the institutional model: “The very vocabulary we use to describe ourselves is borrowed from that society. We are de-formed, dis-eased, dis-abled, dis-ordered, ab-normal, and, most telling, in-valid.” Imagine a parent receiving those labels for a child, and worse, imagine a child or adult hearing those terms applied to him- or herself. People with intellectual and other disabilities who endured these labels were full human beings—that must be restated over and over again—who endured the full brunt of cruelty and evil on a scale that remains barely acknowledged. Their dehumanization was unspeakable.
Not surprisingly, the treatment of people with intellectual disabilities reached its nadir during World War II, when the Nazi final solution targeted millions of Jews for elimination, but also systematically exterminated more than two hundred thousand people with intellectual disabilities and sterilized another four hundred thousand. The Nazi horrors fall into a category of evil all its own, but it is nonetheless a sobering and shameful reminder that one part of the Nazi genocide, the sterilization program, was based on a program started in California in 1909, where the state forcibly sterilized nearly ten thousand “unfit” people by the time of the war. Remarkably, at the Nuremberg trials the Nazis defended their actions by quoting Oliver Wendell Holmes’s “three generations of imbeciles are enough” decision in Buck v. Bell.
How do we make sense of this sad history? It would be easy to point the finger at some distant belief system. But blaming the past both ignores the enduring complexity of the persistent stigma against people with disabilities and also prevents us from examining ourselves. However modern, rational, and inclusive we may perceive ourselves to be, it should come as no surprise that a group of people who bear the marks of social vulnerability and human frailty continue to remain easy targets for exclusion by the “normal” majority. Mainstream culture prizes reason and logic, and strength and beauty, but people with intellectual disabilities remind everyone of the limits of human reason and the inherent frailty of the human body. Our culture also values economic freedom and productivity, but people with intellectual disabilities remind everyone that such ideals are narrow measures of human value. And in a world in which we strive for independence and self-sufficiency, people with disabilities remind us that we are all dependent in some way. “Disabilities” are distractions from the way we prefer to see the world—as though weakness and dependence and mortality can be escaped by any of us.
The philosopher Arne Vetlesen has written that we all try to cope with five inescapable “givens” of human existence: vulnerability, dependence, mortality, loneliness, and frail relationships. These givens are all too visible in the lives of people with intellectual disabilities, and they in turn force us to confront frailties in ourselves. Too often, this confrontation takes the form of targeting people with intellectual disabilities for removal or elimination, as if by excluding them we can exclude the weaknesses within ourselves. At the heart of the history of people with disabilities lies the stubborn human predisposition to try to escape the painful givens of life.
But escape is not a strategy for feeling or living fully alive. In fact, it makes it impossible to do so. Only by facing fears and only by seeing beneath them to the center can any of us feel fully alive. Only by facing the “dis”-abilities that we think will hurt us and discovering that they cannot hurt us can we possibly distinguish pain from suffering and, by doing so, accept the inevitability of pain but reduce the internalization of suffering. None of us can see with the eye of love if we’re afraid to see ourselves, including our own, often hidden disabilities. None of us can love others openly and generously if we’re afraid to love weakness and vulnerability. None of us can find a place to belong if we’re scared of the place we’re headed. But if we pause long enough to face the fears and the givens, we have the chance to stop running away from them and accept them for what they are: the things that make us both strong and vulnerable, and thus the things that awaken us to the desire to trust others and to live for one another, too.
It was many years before I realized how deeply my own family had been imprinted by this history. The shame and vulnerability of intellectual disability was our family secret that even those of us within the family barely understood. Ultimately, it was a secret that could not be kept.
FOUR
Rosemary
How did my mother’s family deal with the sister who was inescapably vulnerable? However one chooses to interpret the conundrum of “givens” that is disability (and life), it was into that world of confusion and vulnerability that my aunt Rosemary Kennedy was born in 1918—two years after infanticide had been depicted in The Black Stork, nine years before Oliver Wendell Holmes’s Buck v. Bell decision, and in the midst of the ascendance of “scientific” treatments of deviance. She was born at the height of the eugenics craze, in the same year that the state of New York created a central database of all “mentally retarded persons, to monitor their breeding and take charge of their defective offspring.” She was the third child and first daughter of my grandparents, Joseph and Rose Kennedy. Over the following fourteen years, my grandparents would go on to have another six children while my grandfather would amass a fortune in business. But in those same years, both he and my grandmother would also have an experience of powerlessness and isolation far from the glamour of politics or business. They would have to make sense of the pity and fear and shame and loneliness and love and struggle that every family of a child with a disability faces. They would have to make sense of Rosemary.
Like other parents the world over, my grandparents had few places to turn to find support for Rosemary. “She was slow in everything and some things she seemed unable to learn how to do,” my grandmother wrote in her memoir. “She could not keep up.” When she went off to elementary school, IQ testing for eugenic purposes—to keep tabs on dangerous elements in the student population—was very much in vogue. The IQ tests were later shown to be unreliable, but at the time they had tremendous influence on a student’s standing. Soon the teachers reported the dre
aded news to Rosemary’s frustrated parents: her IQ was “low.” Her mother echoed the frustration of millions of others: “They all told me that she had a low IQ, but when I said, ‘What can I do to help her?’ there didn’t seem to be much of an answer. There were no classes in the public schools. There didn’t seem to be any private schools, and I was really terribly frustrated and heartbroken.”
Heartbroken.
Was she heartbroken because of the embarrassment that Rosemary would bring to the family if she proved unable to perform at the level of success expected from the other children? Or was she heartbroken because she didn’t think others would love or welcome Rosemary due to her obvious differences? Maybe my grandmother thought others would never value her or see her or love her. Maybe she was heartbroken because she thought a child with differences would never belong.
What may have hurt most of all was the advice she would receive once the diagnosis became clear. Expert opinion at the time said that people such as my grandmother should give up the child with a disability in order to not compromise their other children’s development. Scholars agreed: mothers of children with disabilities spent too much time with their child with special needs and, as a result, neglected the needs of their other children and their husbands. The best interests of the family would be served by convincing mothers that they needed to turn over their “retarded” children to be cared for by “professionals.” Perhaps that advice was what broke my grandmother’s heart.