Throughout most of history, people with disabilities lived on the margins of society. They were most often destitute, begging on the streets or wasting away in poor houses. Social reformers in the mid 19th century began to believe that with some education, children with disabilities could grow to contribute to society in a positive way. Training schools were opened to offer pupils advancement in motor and sensory skills, basic academic education, and lessons in self-sufficiency. The goal was to prepare students to return home and interact in a positive way with the rest of society. For those with mild disabilities, these schools proved to be a great success, giving families hope and assistance for the first time. And as word spread, more and more training schools opened around the country.

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     But with the economic downturn in the late 1850’s and the outbreak of the Civil War, focus on training children with disabilities diminished. These children began to be seen by society as a financial burden, rather than a population that needed to be helped. The educational focus of the training schools quickly turned into a custodial one. Parents were told there was little that could be done for their children, and it was best to place them in these institutions where at least their physical needs could be met. Because it was difficult for physicians to tell the difference between mental illness and developmental disability, these two populations were often intermixed within the same facility. They were called ‘asylums,’ meaning ‘secure retreat,’ and the residents were now referred to as ‘inmates’ rather than ‘pupils.’

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     It didn’t take long for the expense of such institutions to drain available public funds. Efforts were made to economize and to make the institutions more self-sufficient. Despite their limited resources, many facilities attempted to maintain their integrity as places of compassionate care. But over time, most were not successful.

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     In some locations, higher functioning children were used as free labor to work in laundries and farms. But as overcrowding increased, supplies still ran low and children within these institutions suffered from neglect. Stories were told about children sleeping on floors, rarely being bathed, seldom going outside, having inadequate nutrition and clothing, and spending almost every day in the same room.

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     Many children also lived in daily fear of their caretakers. Overworked and underpaid, it was not uncommon for members of staff to take out their frustrations on the children, abusing them both verbally and physically, and, in some cases, sexually. Visits from family members were discouraged and at times, outright denied. There was little oversight, and what went on inside the institutions became shrouded in secrecy.

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     Segregating those who were deemed different was common practice in society during this time. Unless a family was wealthy enough to care for a disabled child at home in private, parents were pressured to place their children in these institutions- physicians and government officials insisting it was the best place for them. These placements became standard practice by the late 1800’s and continued for many decades into the 20th century. Many children grew up in institutions, never knowing the love of a family.

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     In the 1920’s, reform movements began to form in small disorganized groups around the country. A few educators noticed that some of their mildly disabled students benefited from one-on-one attention, and the seeds for special education began to be planted. 

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     The first official special education classes, however, did not address disability at all. They were implemented to prevent delinquency by training “at-risk” students from urban slums in manual work like carpentry and cooking. A few school districts also offered “moral training” to minority students so they could better fit into white society. But these programs were few and far between, not to mention inadequate and misguided, and most children with disabilities in America still lived in institutions and did not have access to them. 

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     Some parents, traumatized by the separation, began to organize in hopes of supporting one another. Many wanted to bring their children back home, but their biggest hurdle was the lack of community services and their inability to financially meet their children’s medical and educational needs. All state funding at this time went directly to the institutions.

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     Another roadblock parents ran into was the misconception that they themselves were responsible for their children’s disability. It was a common belief that children were born disabled because of the moral failings of their parents. The concerns and wishes of parents were rarely taken seriously and doctors continued to encourage institutionalization.

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     An unexpected breakthrough came during WWII when many of the male members of staff at these institutions were drafted into the war. In some cases they were replaced by conscientious objectors, who subsequently conscientiously objected to the conditions they discovered inside these state run facilities. They were outspoken, and were able, for the first time, to raise public awareness about the circumstances in which these children were living. After being invisible for decades, the plight of people with disabilities was finally the focus of public attention again.

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     After the war ended and the United States began to enjoy an economic boom, people were able to refocus on social reform. Parents began to organize with new fervor and demand better conditions for their children. Many of them started services in their own homes and neighborhoods, but they still lacked funding and support from society at large.

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     Two courageous mothers made a huge impact on public opinion during the 1950’s when they published books about their disabled children. One was Pearl Buck, the Pulitzer and Nobel Prize winning author of The Good Earth. The other was Dale Evans, the wife of American singer Roy Rogers. Public opinion swayed against state run institutions in response to these books, and funding for parent organizations began to pour in from private donors. More and more parents formed their own organizations and demanded better services for their children. When Brown v Board of Education passed in 1954, national parent organizations used that momentum to file additional lawsuits arguing that if children shouldn’t be denied equal access to education based upon race, then they shouldn’t be denied based upon disability either. 

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     During this time, politicians began getting involved and making public statements in support of disability rights. Governor Youngdahl of Minnesota said, “… the retarded child is a human being…. He has the same rights that children everywhere have. He has the same right to happiness, the same right to play, the right to companionship, the right to be respected, the right to develop to the fullest extent within his capacities, and the right to love and affection….” These words took the world by storm. Nothing like it had ever been said publicly about a child with disabilities before, and for the first time, some of the prejudice against children with disabilities and their parents began to wane.

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     President John F. Kennedy further bolstered the movement when he spoke publicly for the first time about his sister, Rosemary, who had disabilities. Another sister, Eunice Kennedy Shriver, wrote an article about Rosemary that appeared in the Saturday Evening Post, which further alleviated some of the shame and stigma surrounding having a family member with disabilities.

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     President Kennedy took it one step further when he organized the “President’s Panel on Mental Retardation” which, after much research, wrote a report that led to new legislation that authorized funding for extensive research on the diagnosis, treatment, and education of children with disabilities. This work culminated in Congress enacting the Elementary and Secondary Education Act (ESEA) in 1965 that addressed the needs of underprivileged children, followed by the Education of the Handicapped Act (EHA) in 1970, which finally addressed the specific needs of children with disabilities. 

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     But very quickly, the joy parents experienced at the passing of EHA was tempered. It became apparent that although this law helped states develop programs to educate children with disabilities, it in no way required them to do so, nor did it prevent them from suspending students whose disabilities made them difficult to educate. And no mention was made as to how children still living in institutions might gain access to these new educational programs.

     But in 1973, an organization called the Children’s Defense Fund noticed that 750,000 children appeared in the U.S. Census as not attending school. Upon further research, it was discovered that these children had disabilities and were not being educated by the public school system. The Pennsylvania Association for Retarded Children (PARC) used this data in their lawsuit against the U.S. Department of Education. The Federal District Court ruled in favor of the children, which led to the passing of federal law mandating that all children, regardless of ability, be educated by the public school system.

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     That same year, the Rehabilitation Act of 1973 was passed, which, amongst other things, prohibited discrimination based upon disability in programs receiving federal financial assistance, which of course, included schools. And within Section 504 of that law, language was included that specifically protected students with disabilities from discrimination.

     The passing of the Family Educational Rights and Privacy Act (FERPA) in 1974, established the rights of parents to gain access to, correct, and maintain the privacy of their children’s educational records. And in 1975, Congress amended EHA and enacted The Education for All Handicapped Children Act of 1975 which stated that children with disabilities “have a right to education,” and for the first time, it established procedural safeguards that held state and local educational agencies accountable for how well they protected those rights. 

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     In 1977, new regulations were established for Section 504 of the Rehabilitation Act of 1973 which required school districts to provide a “free and appropriate public education” (FAPE) for all qualified students within their jurisdiction regardless of the severity of their disability, and in 1981, with the passing of the Katie Beckett Waiver, which allowed parents to keep their children at home and still maintain their Medicaid coverage (previously only provided to children living in institutions), the road was paved for thousands of families to bring their disabled children home and still seek medical services using state funding, and to then enroll them in local schools which were now required by law to provide these children equal access to education. As a result, more and more of these institutions began to close, a process that is still ongoing today- yes, today, there are still institutions open in America.

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     In the end, more than twenty congressional acts were passed in consequence of lawsuits filed by parent organizations before President George Bush finally signed into law the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) in 1990, establishing the bedrock that disability rights advocates still stand upon today.