"Euthanasia through neglect…"
– Albert Deutsch
1950–1970 Improve the Institutions
During the post-war boom in America, having a child with a disability was seen as a burden to the family. Doctors continued to urge parents to institutionalize their children regardless of the conditions resulting from overcrowding and understaffing, and these admissions were not just among poor families. Between 1946 and 1967, the number of persons with disabilities in public institutions increased from 116,828 to 193,188, a rate nearly twice that of the general population. Alfred Deutsch referred to this practice as 'euthanasia through neglect'.
Encouraged and influenced by prominent citizens, including Pearl S. Buck and Dale Evans Rogers who wrote of family members with mental disabilities, parents across the country successfully organized and renewed their demands for community services for their children.
Roy Rogers and Dale Evans
Disability as an Illness
One of the most prominent role perceptions of persons with disabilities was that of a person with an illness or disease. Since superintendents of institutions were often physicians, institutions were constructed to resemble hospitals. "State hospitals" were established for individuals with mental illness and "state schools" for individuals with mental disabilities. Living areas were referred to as "nursing units" or "wards," case records were "charts," and "therapy" or "programs" served as the only interactions that individuals had with each other.
In the 1960s, the architecture of institutions reflected a medical model. Clear design distinctions were made between areas for staff (separate lounges, showers and toilets) and larger sterile rooms for residents (floors of heavy tile and toilets without stalls) for easier cleaning and monitoring.
Professionals further separated themselves from their "patients" by wearing clinical white jackets that displayed their name and title. These institutional features reinforced the high status of the professional and emphasized what was wrong with persons with disabilities. As "patients" with an "incurable" diagnosis and low expectations, there was a total loss of independence, choice, and control in their lives.
Resident dining facilities
Senator Robert Kennedy's Visit to Willowbrook
A series of efforts to increase public awareness and understanding about institutional conditions eventually led to improvements in these facilities. In 1965, Senator Robert Kennedy, accompanied by a television crew, toured the Willowbrook State School in New York and described what he saw during his visit.
In that same year, he addressed a joint session of the New York legislature on the "dehumanizing conditions" of the Rome and Willowbrook institutions in New York. In summary he stated that residents in these institutions were being denied equal access to education and deprived of their civil liberties.
Robert Kennedy Visiting Institutions in NY
I think that at the state institution for the mentally retarded, and I think that particularly at Willowbrook, we have a situation that borders on a snake pit, and that the children live in filth, that many of our fellow citizens are suffering tremendously because lack of attention, lack of imagination, lack of adequate manpower.
There is very little future for these children, for those who are in these institutions. Both need a tremendous overhauling. I'm not saying that those who are the attendants there, or who run the institutions, are at fault – I think all of us are at fault and I think it's just long overdue that something be done about it.
In 1966, Burton Blatt, a professor at Syracuse University, and Fred Kaplan, American author and journalist, echoed Senator Kennedy's attack on institutions with their photographic essay entitled Christmas in Purgatory. Using a hidden camera, Blatt and Kaplan captured life inside the public institutions.
The following year, their essay was published in Look magazine, and drew a large reader response. In this essay, Dr. Blatt declared that "there is a hell on earth, and in America there is a special inferno – the institution."
Around this time, Niels Erik Bank-Mikkelsen, Director of the Danish National Service for the Mentally Retarded, visited a state institution in California. His report was read across the country. "I couldn't believe my eyes," he said. It was worse than any institutions I have seen on visits to a dozen foreign countries … In our country, we would not be allowed to treat cattle like that."
These horrific institutional conditions could be related, in part, to gross underfunding. In 1964, the per diem for residents was $5.57, about half the amount for tending animals in a zoo.