The history of disabilities and the disabled, in the Western world.

In ancient Greece, there were few fates worse than those awaiting a child born with a disability. Laws requiring such children to be killed or abandoned in the woods were common, and supported by philosophers of such stature as Aristotle, who encouraged the adoption of “a law that no deformed child shall live.” In 355 B.C., he reached the conclusion that those who are born deaf are “senseless and incapable of reason.” (This was a view that would persist until the 16th century A.D., when Italian physician Girolamo Cardano recognized this to be untrue.)

In the centuries that followed, treatment of people with disabilities in Western societies was often a mixed bag. As with all things within a culture, attitudes toward disabilities were slow to change. The growth of modern religions—particularly Christianity and Islam—gradually caused people with disabilities to be treated, if not as equals, as worthy of some minimal protections. The Catholic Church, the most powerful and influential force in Europe by the fifth century, taught charity as a virtue. Basing its position on frequent depictions of Jesus as showing kindness and even healing the disabled, as well as the call by St. Paul to “comfort the feeble-minded,” the Church made the first steps toward establishing basic human rights for people with developmental disabilities.

Despite this, the treatment of most people with disabilities improved little. While infanticide was no longer widely considered acceptable, people born with disabilities still faced mistreatment and abuse. As they had been in the Roman Empire, people with disabilities were kept as jesters (“fools”) in the courts of the nobility. Considered “pets,” they were abused for the entertainment of the wealthy and powerful. Over the centuries, this practice eventually crept out of the manors of lords and into the streets. In town squares, “idiot boxes,” steel cages where people with mental illness or mental retardation were confined “to keep them out of trouble,” were not uncommon. These were, more often than not, used more for the cruel entertainment of the townsfolk than for any more utilitarian or humanitarian purpose. (It is from this practice that the term “village idiot” is derived.)

Near the end of the first millennium, a movement began to create “hospitals” to care for people with disabilities. The first such institution, founded in 787 A.D. by the archbishop of Milan, cared for children abandoned at birth, many of whom had developmental disabilities. Other facilities followed, creating a series of orphanages and asylums throughout Europe. While in theory these institutions were designed to improve the lives of people with disabilities, they were, in practice, far from adequate to meet the needs of the people they were designed to serve. Most children in the church orphanages did not live to adulthood, and conditions within most institutions were stark. In many places, the hospitals were converted leper colonies where those with mental retardation as well as those with mental illness or severe physical disabilities were incarcerated alongside thieves, robbers, and violent criminals. Some of these colonies—sometimes called “cities of the damned”—existed into the 19th century.

Because mental retardation and mental illness were seen by Western society as problems caused by moral deficiencies, the growth of acceptance of the religious concept of the “Chain of Being” served to make conditions more difficult for people with such conditions. The Chain of Being, an idea first proposed by Aristotle and widely taught by priests and philosophers during the Renaissance, proposed that every being in the universe was part of a hierarchy, with God at the top, Satan at the bottom, and each type of organism from angels to animals to demons organized neatly between. According to the religious scholars of the time, people with mental retardation or mental illness were “subhuman” and resided on a lower plane than “human beings” on the Chain of Being. The implication went beyond one that people with mental retardation or mental illness were less than “full humans”; they were outright evil. This concept, rooted in Catholicism, survived into early Protestantism, where it blossomed. Martin Luther decried children with disabilities as “a mass of flesh, a massa carnis, with no soul.” They were, he reasoned, necessarily possessed by evil spirits, saying “The Devil sits in such changelings where their souls should have been.” As a result, incidents of infanticide began to increase once again, and violence against people with disabilities rose.

In England—which by the 1530s had broken with the Catholic Church independently of the Protestant movement—the view toward people with disabilities was less hostile. Queen Elizabeth pushed Parliament to establish “Elizabethan Poor Laws.” The laws, which among other things set up government-run homes (“almshouses”) for the poor, were largely intended to provide basic care for people with disabilities (the “unemployable poor”). The conditions in the government houses were less than ideal, but the Elizabethan Poor Laws nonetheless served as a landmark in the creation of a safety net for people with disabilities.

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Disabilities in the United States

The colonization of North America by European settlers brought Western ideas on mental retardation to the New World. An Elizabethan almshouse was established in Boston as early as 1660, and correctional institutions began to open half a century later. As in Europe, both types of institutions were used to house people with mental retardation alongside “rogues, vagabonds, and idle persons . . . runaways, drunkards, wanton and lascivious persons, railers or brawlers.”

In 1751, Benjamin Franklin and Philadelphia physician Thomas Bond founded Pennsylvania Hospital “to care for the sick-poor and insane who wander the streets of Philadelphia.” The hospital created a special section dedicated to providing services to people with mental illness and mental retardation. As with most previous attempts at humanitarian treatment of people with disabilities, this one failed; in 1756, the ward was moved to the cellar, where the “patients” were put on display as oddities. For the price of a ticket, members of the public could gawk at people with disabilities.

Fortunately, things began to change. The Virginia legislature passed laws “to make provision for the support and maintenance of idiots, lunatics and other people of unsound mind”, and as a result established the first hospital dedicated solely to “these miserable Objects who cannot help themselves” in 1773. By the time Dr. Benjamin Rush joined Pennsylvania Hospital, the conditions had improved markedly. “Here were both men and women, between twenty and thirty in number. Some of them have beds, most of them clean straw,” he wrote. “Everything about them, notwithstanding the labor and trouble it must have required, was neat and clean.”

It should be understood that the almshouses, the correctional institutions, and the hospitals were primarily for the (arguable) benefit of those who were without family supports. Since the earliest days of European settlement, people with disabilities in the United States were primarily cared for at home by family. This tradition, which in the second half of the last century resurged, was the norm until the early 19th century, when almshouses—designed to care for the poor—began to take on the care of people with developmental disabilities out of necessity. Some communities at this time began the practice of loading people with disabilities into wagons or carts, taking them to a town some distance away, and then abandoning them there. These people nearly always ended up in the almshouses, where conditions were far from ideal. As Bruce Pacht, Executive Director of United Developmental Services in Hartford, Connecticut once told students at Dartmouth College, “Almshouses intended for the poor became general holding pens for all sorts of children, aged and infirm adults, sick people, and so on.”

The middle of that century saw a shift in attitudes toward mental retardation; instead of being a problem of “low morals,” mental retardation was seen as a problem of “low education.” People with mental retardation were still seen as “deviant” but it was, according to the philosophy of the time, possible to educate them so they would no longer be “deviant.” The first of such schools was opened in Boston in 1848, and other schools followed in New York, Pennsylvania, Connecticut, Ohio, and Kentucky.

By 1900, most of these schools were supplanted by hospitals that recognized the medical causes of mental retardation and other developmental disabilities, but which considered people with these conditions as “sick and incurable.” The goal of education was replaced with the goal of segregating people with disabilities from society, usually for their protection. Of special concern was the plight of “weak minded females,” who, according to poet and activist Amy Shaw Lowell were “so simple as to be easily led away by designing men.” Lowell, herself a wealthy philanthropist, had a home constructed specifically to prevent this kind of mischief.

While scientific advancements at the end of the 19th century offered hope for new medical treatments, they also brought about many negative changes for the treatment of people with disabilities. The growing acceptance of Mendelian genetics led to the resurrection of the concept of eugenics. Eugenics, first promoted by the Greek philosopher Plato, proposed that physical and mental traits—such as morality, intelligence, and business acumen—were passed from parent to child. Based on this assumption, proponents of eugenics theorized that a “superior race” could be established through selective breeding of people with “superior” traits, and that allowing those with “inferior” traits to reproduce would weaken the human race as a whole.

The idea of isolating people with disabilities for “protection” was transformed from “protection of the individual” to “protection of the gene pool.” Laws mandating sterilization of people with disabilities became prominent, and the idea of disabilities as a moral fault re-emerged with a new twist:

History Note: Buck v. Bell The United States Supreme Court addressed laws mandating the sterilization— voluntary or not—of people with mental retardation and other disabilities in 1927 in Buck v. Bell (274 U.S. 200). The case was brought by Carrie Buck, a 21 year-old woman who had been committed to Virginia's State Colony for Epileptics and the Feebleminded in 1924. Buck, who had mental retardation, had given birth to an illegitimate child who the state alleged also had mental retardation. The Colony’s superintendant had asked the court for permission to perform an involuntary sterilization procedure on Buck to prevent the birth of “more feebleminded children,” and Bell resisted. In an 8-to-1 decision, the Supreme Court ruled in favor of the state. Justice Oliver Wendell Holmes, wrote for the majority that, “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 continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.” The precedent set forth in Buck v. Bell was largely (but not entirely) overturned in 1942 by Skinner v. Oklahoma (316 U.S. 535). While Skinner did rule that laws allowing for involuntary sterilization of most criminals violate the equal protection clause of the 14th Amendment, it declined to specifically overturn laws allowing involuntary sterilization of people with mental retardation. The court noted that while the Oklahoma law had drawn a line between allowing sterilization for those who committed grand larceny and those who had committed embezzlement, “We have not the slightest basis for inferring that that line has any significance in eugenics, nor that the inheritability of criminal traits follows the neat legal distinctions which the law has marked between those two offenses. “ Instead of overturning Buck, the court elected to distinguish the two cases, relying on the assumption that people with mental retardation are likely to commit crimes and have children who commit crimes to uphold the core finding in Buck on public policy reasons of crime prevention.

people who were disabled from birth were “genetically predisposed” to having “bad morals” because they had inferior genes. Having a developmental disability was, when it was all said and done, indistinguishable from being a criminal. People with mental retardation and other developmental disabilities were again stigmatized, only this time it was science instead of religion that was abused to justify stereotypes.

As a result, people with disabilities were again condemned to the same treatment as criminals. In 1907, Indiana became the first of 23 states (over half of the states in the U.S. at the time) to pass legislation requiring the involuntary sterilization of “any confirmed criminal, idiot, rapist, or imbecile in a state institution.” (Seven additioanl states passed similar legislation.) Since, at this point, the vast majority of people with developmental disabilities were confined to state institutions, it was nearly a foregone conclusion that if a person had a developmental disability, that person was going to be subjected to an involuntary sterilization procedure. It is not insignificant that Virginia’s eugenics law became the model for Nazi eugenics legislation, and was a key piece of defense evidence in the Nuremburg trials.

Such actions did not come without public support. In 1915, Good Housekeeping magazine advised its readers that people with mental retardation “are born of and will breed nothing but defective stock” and, without citing any source, asserted that “seven-eighths of our criminals are recruited” from this population. “Take care of the morons,” the magazine said, “ and crime will take care of itself.”

Throughout this time, there were those who questioned the wisdom of such assertions, involuntary institutionalization programs, and the generally inhumane treatment accorded to people with developmental disabilities. In the 1930s, small local organizations began to spring up around the country, but it wasn’t until the 1950s that society as a whole began to question the wisdom of involuntary institutionalization for people with disabilities. With the formation of The Association of Friends and Parents of the Mentally Retarded (now known as “The ARC”) people with disabilities had a national organization to advocate for their rights. Following the Brown v. Board of Education case in 1954, The ARC was able to assert the rights of people with disabilities to receive an education.

Although it was seen primarily as an anti-segregation case, Brown was far broader in implication, affirming the right of all citizens to not face discrimination in the educational system. As a result, parents began to demand that their children with disabilities receive quality education, and most fought to have that education occur alongside other children in “regular” schools.

Spurred on by such successes, advocates for people with mental retardation set their sites on state-run institutions. These facilities had remained largely unchanged since the turn of the century, when the eugenics movement had largely turned hospitals for people with developmental disabilities into prisons. In her book An Exposure of the Heart, author Rebecca Busselle described one such institution in the 1960s through the words of an employee:

“When Dr. Hampton lived here this place was run like a tight ship, and he was here almost twenty years. See that tree in the corner of the slide? It was a crime to pick a pear off that tree. A crime. All the men from Dogwood, which was next door, would steal pears as soon as they were ripe. And Dr. Hampton would have them locked up in P-5 for doing it.”

I hesitated to probe further. The details of Wassaic life were painful.

“That was solitary maximum security,” she volunteered. “There were nineteen cells each with a bed. They got thrown in until they calmed down.”

“A padded cell?”

“My goodness no, cement and tile. If the residents took the bed apart—and many were so upset they did—then we called the campus cops to take the bed away and he slept on the floor with a blanket.”

Such conditions were not abnormal at these institutions. During the early 1960s, Sen. Robert Kennedy and other political figures began to raise the alarm about the conditions in such institutions. Public sentiment did not begin to change dramatically, however, until the media took up the cause. In 1965, photojournalists Burton Blatt and Fred Kaplan documented the conditions in state institutions over Christmas. The photos and accompanying text, entitled Christmas in Purgatory, shocked the public with scenes of nude residents behind barred doors and barbed wire, often bound or lying in filth. For the next decade, television exposés of similar conditions in institutions throughout the country continued to raise awareness of the plight of such “inmates.”

As a result of such exposure, states began passing laws recognizing the rights of people with disabilities and, under further pressure from the mental health community, began to close the institutions. This process, known as “deinstitutionalization,” continues today.

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After Institutions: New Models

As people were moved out of institutions and into the community, the focus of services to these individuals began to shift from “caretaking” to “support.” This was a significant difference in that it embodied a new attitude toward people with developmental disabilities: instead of being people who needed attending, they were people who had goals and dreams of their own and simply needed assistance in achieving them.

The result was a model called a “group home.” Unlike an institution, a group home is a place where the individual is in charge and the staff are guests. Instead of a regimented schedule, there is freedom to make choices: Do I want to eat a snack? Do I want to watch television? Do I want to invite some friends over? The individual served in the home makes the decisions, and the staff assist the individual in making those decisions become reality.

A group home usually consists of between 2 and 16 individuals living as housemates in a residential area. Staff are on-hand 24 hours a day, assisting the people who live in the home. Such assistance may range from help bathing to cooking meals to serving as chauffeurs. The staff are also charged with the safety of the individuals who live there, meeting any special nutritional needs, and maintaining the home.

Another difference between institutions and group homes is the relationship with the community. Whereas the institution was intended to segregate the individual with a disability from society permanently (to either protect the individual from society or, in the age of eugenics, to protect society from the individual), group homes are intended to be places of community integration. The staff in a group home are an important element in this process, as well, finding opportunities for community integration and acting as advocates for the people they are serving. Under perfect circumstances, a person who is served in a group home gains enough independence to rely on fewer and fewer supports. Those who can do so may choose to move out their own and use little or no supports, or they may choose to stay where they are. The choice of how quickly and how boldly to approach complete community integration is up to the individual.

This integration is achieved in many ways. One is encouragement and support by staff in building skills. Another is the creation of opportunities for community involvement. There are many others, as well. What they all have in common is that they build confidence in the individual being served, and they rely on advocacy, both from the person being served and the staff who support her.

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Next Steps

As the concept of treating people with disabilities as equals advances significantly—possibly for the first time in history—it becomes more and more difficult for paternalistic approaches to maintain their allure. Views of people with developmental disabilities have progressed from “subhuman” in ancient times through “patient” and “client” to finally “citizen.” As such, the decisions about their lives are being made less frequently by doctors and other professionals. Instead, they are made by the individual himself.

This new focus on self-determination has led to fundamental changes in the way that people with developmental disabilities see themselves and in the way that they are seen within the community. Self-determination is based on four basic principles:

1. Freedom to exercise of the same rights as all citizens. People with disabilities (with assistance, when necessary) will establish where they want to live, with whom they want to live and how their time will be occupied. They do not have to trade their inalienable rights guaranteed under the Constitution for supports or services.
    
2. Authority and control of whatever sums of money are needed for one’s own support. This control includes the re-prioritizing of these dollars when necessary. This is accomplished through the development of an individual budget that “moves” with the person.
    
3. Support through the organization of these resources as determined by the person with a disability. This means that individuals do not receive “supervision” and “staffing”. Rather, folks with disabilities may seek companionship for support and contract for any number of discrete tasks for which they need assistance.
    
4. Responsible and wise use of public dollars. Dollars are now being used as an investment in a person’s life and not handled as resources to purchase services or slots. Responsibility includes the ordinary obligations of American citizens and allows individuals to contribute to their communities in meaningful ways.

These principles are part of the “People First” movement, an effort to promote the idea that, first and foremost, people with disabilities are people. The approach is both a metaphorical and literal (“people with disabilities” as opposed to “disabled people”) approach to the principles of self-determination.

As a result of the implementation of these principles, a growing number of individuals are now being served not in group homes, workshops, or special schools, but in their homes, local businesses, and neighborhood schools. This level of involvement in the community and focus on individual needs and desires will continue to help more people with disabilities—even severe disabilities—live in their own homes with more independence and dignity.

One way in which this support is offered is through supported living programs. These programs are similar to the group home model in terms of the assistance offered by staff. What differs is the setting: instead of the services being provided in a group home, the individual is served in his or her private residence. This is an important development, because it promotes a greater degree of community integration.

Similarly, professionals are beginning to question practices that deny people their civil liberties. In particular, the practice of imposing guardianship on those with disabilities has come under scrutiny as a severe way of accomplishing goals that could be reached in far less drastic ways. While often premised on the laudable intentions of protecting a vulnerable individual from actions both unwise and exploitive, the appointment of a guardian denies an individual the legal right to make decisions for himself. Instead, people are starting to use other means of protection—power of attorney, protective orders, limited bank accounts, trusts, and similar devices—to obtain the same goals.

Values and services continue to evolve as needs, understanding, and attitudes change. As our history demonstrates, this is inevitable. Hopefully, increased self-advocacy and a “people first” approach to disabilities will make these changes positive far into the future.

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