The Museum of DisABILITY History is open weekdays, 10am-4pm.

A new museum explores the way we have perceived and treated people with disabilities

There’s a new history museum in town, on the history of disabilities, mental and physical, and how we think about these realities, and help or don’t help the disabled and people in general deal with them. The Museum of DisABILITY History is at 3826 Main Street, in the old firehall, just past Bailey.

As ever with realities we don’t like to think about, the words keep changing. All the way back to the Greeks, whose word idiotes didn’t mean idiot but something more like private citizen in a society that put a premium on public service, then someone without a special skill or special knowledge, then simply ignorant.

The particularly denigrative meaning came later, in later languages, seemingly beginning around the early Renaissance. The museum exhibit points out that in pre-literate societies people with intellectual disabilities were not so noticeable. Intellectually disabled is the current term of art. Other terms along the way, since the Renaissance, have included feeble-minded, mentally defective, mentally retarded, and developmentally disabled. (The exhibit spares us the more cloying political correctness terminology. I may have missed it, but in the copious verbal material accompanying the exhibit objects and graphics, I didn’t see the word “challenged.”)

Modern ideas of treatment of mental and physical disabilities—with particular reference to how we do it now in the United States—got started with the French Enlightenment. In the 17th century there were “lunatic asylums” in France, in which therapy consisted basically of shackles and chains. In the late 18th century, several theorists and practitioners in the field came up with ideas about providing disabled individuals with purposeful activities. It was the beginning of modern psychological methods of care and treatment of the disabled.

A man named Edward Seguin, who trained in the newer ideas and methods being developed in France, came to the United States in 1850 and worked first in Boston with Dr. Samuel Gridley at his School for Idiotic and Feeble-Minded Youth, then joined Dr. Hervey Wilbur in setting up a series of schools/institutions for the New York State Commission on Idiocy to house and teach young people with intellectual disabilities, to enable them to return to their families and live productive lives in society. Dr. Wilbur’s hope and intention was to cure them, the exhibit points out, but continued custodial care became the norm.

Such institutions constituted the dominant mode of caring for and treatment of people with intellectual disabilities through most of the 20th century, until exposés of deplorable conditions in some state institutions (such as the notorious Willowbrook Developmental Center on Staten Island that Senator Robert Kennedy, after a tour of the place, described as a “snake pit”) led to a change in direction toward de-institutionalizing, and establishment of community residences for the disabled.

Posing the question about community responsibility for the care and treatment of the disabled in terms of communities, plural. (Buffalo has a lot of such residences for disabled of all sorts. I have a friend, a social worker, who was involved some years ago with an effort to establish a community home in Orchard Park for Down Syndrome people. There were public hearings, and opposition based on a spectrum of fears and apprehensions. Opposition that didn’t go away even after all the fears and apprehensions were addressed, it would have seemed, from any reasonable point of view. Finally, one man got up and said, “I don’t want to have to see those people.”)

The original question about community responsibility for care of the disabled is basically a fiscal one. Who does it, which comes down to who pays for care that is beyond the means, fiscal and otherwise, of the family of the disabled. Documents on display from colonial-era Massachusetts and Connecticut mandate that idiots and distracted persons not cared for by their families be cared for by the community. By the early 19th century, most communities had poorhouses or almshouses, largely populated by the disabled. These institutions morphed into the schools/institutions in use through the mid-20th century.

The question of costs and other considerations in the 20th century raises the edging-into-the-ugly matter of eugenics (which Hitler, for example, saw such potential for). A eugenics display touches on the ugly, but also on positive aspects such as UB professor and Children’s Hospital physician Dr. Robert Guthrie’s development of PKU and related fetal tests (raising further ethical considerations).

A section of the exhibit deals with special difficulties the black community encountered with respect to care and treatment of the disabled. Over the long span of years the “separate but equal” doctrine prevailed regarding public educational facilities in general, it applied also to educational and training facilities for the disabled. (Whereas, “separate but equal is inherently unequal” was and is a universal.)

Other sections are on supposed humor at the expense particularly of the intellectually disabled, on athletics and the disabled, and on assistive devices. The oldest depiction of an assistive device is in an illustration in an Egyptian tomb from 2830 BC of a man with what looks like a misshapen lower leg and foot using a crutch.

Also a section on a mobile educational program called Kids on the Block that uses muppet-like puppets to teach children about disability issues (and differences in general) in a comfortable and entertaining way. Presentations are made free of charge in schools and like venues.

The Museum of DisABILITY History is a project of People Inc. Tess Fraser is the museum director. Douglas Platt is the curator. And puppeteer extraordinaire Brie Kishel is project coordinator of the Kids on the Block program.

—jack foran