Documenting Disability in America
Handwritten letters, research notes, testimonies before Congress, poetry, essays, editorials, and photographs. An array of documents, filling boxes on shelves and carts that crowd the Department of Special Collections and University Archives (SCUA) on Floor 25 of the W. E. B. Du Bois Library, awaits digitization. These boxes hold evidence of the lives of people who lived with disabilities, many of whom also fought for the rights of their fellow citizens living with some type of physical or mental disability. “The very concept of disabilities is inherently complicated. What counts as abled or disabled is so bound to a particular culture, a particular moment in time,” says Rob Cox, Head of Special Collections. “What we’re doing here is dropping a little tiny sand grain into an ocean of a very complicated culture. We hope it’ll get people talking about some of the issues.”
Together with Danielle Kovacs, Curator of Collections; Aaron Rubinstein, University and Digital Archivist; and Kyle Boyd, Project Coordinator, Cox is grappling with these complicated issues while overseeing a new grant project, Visibility for Disability: Documenting the History of Disability in America and the Growth of the Disability Rights Movement. In February, the Council on Library and Information Resources (CLIR) awarded a two-year, $250,000 Digitizing Hidden Special Collections and Archives grant, funding the digitization of approximately 55,000 items chosen from 19 of SCUA’s more than 30 collections related to disability. The digitized items will be added to Credo, SCUA’s online digital repository: credo.library.umass.edu.
SCUA’s collections span the years between 1863 and 2016 and, while rooted mainly in New England, include the papers of nationally recognized activists such as the late Judi Chamberlin, a pioneer in the psychiatric survivors’ movement, and Elmer Bartels, a key figure in creating early statutes regarding civil rights for persons with disabilities. There are records about facilities such as the Belchertown State School and the Clarke School for the Deaf. Documents chosen for digitization help illustrate “the struggle for full civic participation for persons with physical disabilities and the struggle for rights for persons with psychiatric disabilities,” according to the grant narrative.
Chamberlin (1944-2010), voluntarily and involuntarily committed to psychiatric hospitals during her life, was influenced by the civil rights movement and was active in the disability rights movement for 39 years. The Chamberlin Papers—38 boxes—help tell the story of her work and how she encouraged other activists. In a letter to Anne Boldt, dated May 14, 1985, she wrote, “From what I hear, you are unhappy with the way things have been going in the movement. I hope that you … and others who are dissatisfied will somehow become part of the ongoing dialog. We need your input.”
Other collections include the papers of Lucy Gwin (1943-2014), a civil rights activist. Left with a traumatic brain injury after a head-on collision with a drunk driver, she endured a grueling and demoralizing stay at a brain rehabilitation center and subsequently put her organizing skills to work in the disability rights movement. Portions of the papers of the late Massachusetts State Representative Silvio O. Conte, who fought for the disabled, will also be part of the digitization project.
In discussing the Libraries’ collections, Cox said that when he came to UMass Amherst to head Special Collections 15 years ago, the most notable collection was the W. E. B. Du Bois Papers. “There was a little bit of a lot…not a ton in any one area,” says Cox. As he and Kovacs considered how to grow the department, they realized that while Du Bois was an important figure in the history of civil rights and racial justice, “he wasn’t just a civil rights guy, and wasn’t just a racial justice guy,” as Cox puts it. “In fact, one of the most important contributions that Du Bois made was his recognition that movements of social justice are often very deeply intertwined.”
In the years since, Special Collections has added considerably to its social justice and civil rights collections, and over the past several years they began to be approached by people in the disability rights movement. “Many of them saw themselves in the broad tradition of civil rights or civil liberties movements—human rights movements,” according to Cox. So, their focus turned toward disability rights collections, which “fit conceptually very well,” he said. Highlighting parts of 19 collections by digitizing them and making them freely available online will help facilitate a deeper understanding of the experience of disability, disability history, and disability rights history in this country. Aaron Rubinstein explains that archivists describing historical items strive to do so accurately while being sensitive to the ways language has changed and continues to change. Many terms related to disability issues have fallen out of favor or been superseded, such as the once-common “institutionalization,” which has been more or less replaced by “involuntary hospitalization.” Rubinstein notes, “In my experience, the number one thing has been listening to people; there’s no dictionary or guidebook. We really have to understand how people think about themselves, how they want to talk about themselves—the contemporary context and the historical context—and be willing to be flexible and change if we’ve gone down a wrong path.” Kyle Boyd points out, “Most of what we have, people wrote about themselves, and so the terms they used for themselves are useful.” Cox observes, “The great thing about this project, about these collections, is that they bring together all these different strands. It’s an important history that has really not, until very recently, gotten told in a way that is respectful to people who lived through these institutions and these experiences.”
Explore the digitized collections related to disabilities.