Lest We Forget is a story about Ohio's developmental centers -- institutions like the one self-advocacy leader Roland Johnson called "a desert world" -- and the people in whose lives those centers played a huge role. Although the story ends with people who had been congregated and segregated returning to the sorts of places nondisabled Ohioans live, it's not a wholeheartedly triumphant story. Along the way, we visit the unmarked graves of people who died in the developmental centers, and there is no such thing as an entirely new beginning for people who bear years of institutional scars.

Lest We Forget is told by people who lived in developmental centers, by their family members, and by the staff people who have worked in those centers and in the places to which people were moved. It's also a story told to and edited by Jeff Moyer, whose brother Mark was one of the people who went away and only slowly and much later came back home. It's told in a format that is accessible to a great many people who do not read -- which includes a lot of people who have been sent away to developmental centers. And it's told in the participants' own words: Moyer does summarize the experiences he's hearing about in sung and spoken segments, and is occasionally heard asking a question when the answer doesn't make sense as a stand-alone statement. But most of the piece is just people telling their parts of the story.

In other words, while mainstream attention would be a very good thing, Lest We Forget isn't a story a community tells to the larger society. It's a story -- a vitally important story -- that a community tells to itself.

The story has been told in other ways.

Johnson's autobiography Lost in a Desert World (as told to Karl Williams) and Dave Hingsburger's extended interview and meditation I Witness are first-person accounts by people who were institutionalized.

Burton Blatt's photo essay Christmas in Purgatory and Geraldo Rivera's footage of Willowbrook are attempts to shock people into an awareness of what the reality of those institutions is.

Wolf Wolfensberger's The Origin and Nature of our Institutional Models and James Trent's Inventing the Feeble Mind examine the theories and practices exemplified in institutions over time.

The story has also been not-told in a variety of ways, ranging from the warm-fuzzy institution story to the outright omission.

As I write this, I've just thrown out a mailing from a local CIL which brings up -- as virtually all of these mailings do -- the importance of getting people out of nursing homes. Despite years of promises to do better at cross-disability work, they haven't yet indicated to me in any way that getting out of any other kind of institution is related to independent living.

I've just read through a listserv discussion about people who are not managing to find and keep paid employment even with the backing of new laws, and who may never be bringing home paychecks. People have considered how the focus on jobs for those disabled people who are the least disadvantaged in the workplaces of a capitalist country plays out in the lives of those disabled people whose exclusion still seems insurmountable. All the same, many disability rights groups are still locked in an account of justice that assumes that every adult can, with appropriate accommodation, be the sort of worker whom employers in a free-market free-for-all will want.

And of course there's the pervasive mainstream myth that any nondisabled interference whatsoever in disabled people's lives is not merely well-intentioned but outright helpful, so that gratitude is the only possible reaction anyone with a given kind of diagnosis can reasonably have to being separated from one's family, locked in a "cottage," sexually abused, denied any meaningful activities, and drugged until protest is impossible.

When you consider what has already been said and what has never been listened to, Lest We Forget is an important piece.

Lucy Gwin at Mouth has called Lest We Forget "the first fitting epitaph for the golden age of institutions"; but I don't think "epitaph" is quite the right word. While I think I understand why she said it, and while progress has certainly been made toward bringing people home , epitaph seems to me to suggest the unchangeableness of a final summing-up, and I think we've got a ways to go before any epitaph is even possible. Lest We Forget seems, rather, to be a record of the attitudes of a group of Ohioans as they look back on the institutional period and forward to the models they now endorse.

It's a record made at a particular moment in history. Twenty years, or fifty, down the road we may all be shaking our heads in wonder that we were ever naive enough to think that four-person group homes were a significant advance over large institutions. We may all be grieving over a moment when we thought that communities were for everybody , before people weren't once again shut out because they were disabled. Or we may look back on Lest We Forget as a recording that helped to bring people together to make the world a better place . It will not mean to the next generation what it means to us; but the era of institutions is at best newly dead and at worst ready for a lockdown renaissance.

As far as many of us in the disability rights movement are concerned, the big developmental centers are thoroughly discredited; but as far many in mainstream America are concerned, Willowbrook was a horrible exception and Blatt might as well never have existed at all.

It is partly because the struggle Moyer is chronicling is ongoing that I think this is such an important contribution to disability rights. The larger society, and even the larger disability rights community, knows too little about the struggle to bring people out of the desert world of institutions; and as a result it's easy for members of the larger community to be complacent about solutions that look good on paper or are implemented by people who clearly mean well. Even the large institutions -- and this is documented better in Trent's book, for example, than it is in Moyer's recordings -- were initially meant to serve a purpose quite different than to segregate people from their families and communities, but they did not live up to their promise.

Like Kelley Johnson in Deinstitutionalising Women, which is an account of the closing of one Australian institution and the ways that individual residents' futures were negotiated, Moyer's account shows some of the cracks that have appeared in the gleaming façade of "community services."

It includes the voices of some people who do not regard the return of Ohio's vanished citizens to the communities from which they were removed as a step forward. These aren't voices I expected to hear, and I think the piece is stronger because they are included: the community whose story this is has not declared utopia, has not even agreed on what utopia would look like, but still struggles not only with the larger society but with one another and with those people who take crips -- or some other subgroup -- as paradigmatic and assume that the values, critiques, and goals developed by crips should be adopted wholly by people from other subgroups.

No matter what one's political commitments (and the recent NOD press release "People with Disabilities Give Unprecedented Support to President Bush" should remind us that people concerned with disability issues are not all on the same page) and no matter whether one views the next four years, or the four after that, or the four after that, as a time of hope or despair or business-as-usual, the history of disabled people in America is worth considering seriously so that we can be informed as we move forward -- and for those people who are unaware of the history of people with significant cognitive impairments and who are good at audio, Lest We Forget is a very good place to start.

Posted Dec. 27, 2004

Cal Montgomery writes frequently for Ragged Edge. Read her essay, Critic of the Dawn.

WHAT DO YOU THINK of what you've just read? Click to tell us.