We all deserve a private and dignified life

By Tom Dooling

Fall 2009

It is perhaps difficult to believe, but the “institutional bias” towards the treatment of individuals with disabilities, particularly developmental disabilities and mental illness, started out as a genuine reform movement.

Of course, in the earliest years of white settlement in North America, ours was an essentially rural society where families and extended families were a large part of the population, and children with disabilities often stayed at home for their entire lives, performing simple farm chores if able, and cared for by the larger family.

As society grew less rural and more and more people lived in an urban setting, large and well-off families continued to be able to care for disabled members at home, but increasingly the children of urban poverty who had intellectual disabilities were often left to fend for themselves as casual part-time laborers, beggars, petty thieves and prostitutes.

At one time in American society, people with decreased cognitive capacity or mental illness were prosecuted as witches and either jailed or executed With increasing social conscience in the late 19th century, it was determined that people who could not support themselves or survive in the cities needed to be cared for as a charitable duty of churches and the state.

Congregate living farms where individuals with mental illness or cognitive deficits could be cared for, be moderately self-supporting through simple farm labor and receive adequate care, clothing, shelter and food came to be considered as a social duty.

After the turn of the century, with Darwinian It’s the Law principles of natural selection becoming ingrained in the public mind, people with developmental disabilities, including Down syndrome, epilepsy and cerebral palsy, were considered by many to be considered a defective or sub-human race, and the interest of society became less of caring for them than segregating them away from non-disabled people, keeping them out of society, and above all, keeping them from reproducing.

Many court decisions and statutes of the time, supported by the principle of eugenics, sought to improve the human race by humanely sequestering individuals with mental disabilities, sterilizing them so that they wouldn’t have children, and thus gradually exterminating them from human society.

Legislation creating Montana’s institutions in the 1930s, and the original function of the “Boulder River School” as well as the Montana State Hospital in Warm Springs, were for lifelong, custodial care for people whom the legislation, at its most generous, referred to as “defective.”

It is a good idea to remember that while we in the U.S. and particularly in the West were permanently institutionalizing people, the German nation, until then regarded as one of the most civilized countries on earth, was rounding up people with mental illness and cognitive deficits and sending them to the death camps by the hundreds of thousands.

The custodial institutions continued to flounder along after World War II and into the 1970s, when an unknown young television reporter in New York, Geraldo Rivera, sneaked into the Willowbrook State School in New York City with a smuggled key and a cameraman.

The footage he showed on television drew howls of horror and outrage at the deplorable conditions in which New York citizens with developmental disabilities were housed.

It attracted the attention of the Kennedy family and indirectly led to the passage of the ADA. Nearly 10 years ago, two women with developmental disabilities sued the State of Georgia under the Americans with Disabilities Act, taking their case eventually to the Supreme Court of the United States.

In the Olmstead decision, named after the director of the Georgia State Hospital system, the Supreme Court ruled that Americans with developmental disabilities have a right to be treated in the community in the least restrictive environment, provided that making this transfer did not “fundamentally alter” the state’s existing system for delivering services, and requiring the states to work toward removing residents to community-based services at a rate that kept the waiting list moving at a “reasonable pace” and that was not slowed by the state’s desire to keep institutions open.

The Travis D. lawsuit, settled 51/2 years ago, made some substantial progress towards realizing the Olmstead goals of directing our society’s attention towards integrating citizens with disabilities fully into our community lives, and resulted in the closure of one of Montana’s two homes for people with developmental disabilities and downsized the facility at Boulder.

However, the job is not done yet, and there are still too many people who go on living, year after year, in the institution where conditions slow their progress towards community placement rather than providing them with the necessary tools for a successful, autonomous, private and dignified life as the part of a supportive community, rights assured by our constitution and taken for granted by most of us.

Tom Dooling, an Episcopal priest, is a former staff attorney with Disability Rights Montana, based in Helena, Mont.

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