Tina Calabro
Western PA Disability History and Action Consortium
Guy Caruso
Institute on Disabilities at Temple University
Abstract: The Western Pennsylvania Disability History and Action Consortium is a community-based archives. Founded in 2015, it preserves and honors the historic struggle of Western Pennsylvanians with disabilities to attain human and civil rights. It shares their lived experiences in order to promote community access, participation, and equal opportunity. Written by two founding members, this article describes the Consortium’s mission, goals, activities, and partnerships.
Keywords: Western Pennsylvania Disability History and Action Consortium, disability history, rights, archives, disability studies
The Western Pennsylvania Disability History and Action Consortium (WPDHAC) is a community-based archives. Founded in 2015, it preserves and honors the historic struggle of Western Pennsylvanians with disabilities to attain human and civil rights. It shares their lived experiences in order to promote community access, participation, and equal opportunity.
The Consortium is dedicated to engaging the public in the dynamic history of people with disabilities. It also honors mistreated people and/or those denied their rights. It recognizes the efforts of individuals with and without disabilities to effect positive change and to raise public awareness of contemporary issues that affect thousands of people with disabilities across Pennsylvania and millions across the nation.
The organization ensures that people with disabilities are the primary and leading force in telling their story. Founding members include individuals with disabilities. Affiliated organizations include the Senator John Heinz History Center (a Smithsonian affiliate); Institute on Disabilities at Temple University (Pennsylvania’s University Center for Excellence in Developmental Disabilities Education, Research, and Service); Achieva; Community Living and Support Services (CLASS); National Alliance on Mental Illness-Keystone Chapter (NAMI); Western Pennsylvania School for the Deaf; and two Centers for Independent Living (Disability Options Network and Transitional Paths to Independent Living).
Western Pennsylvania has a notable history of advocacy and progress on disability rights This includes activism by Arc Allegheny (now Arc of Greater Pittsburgh, a component of Achieva) to expose abuses at Polk State Center and other state-run institutions in the 1970s. Western Pennsylvania advocates also participated in a 1971 lawsuit to ensure the “right to education” in Pennsylvania, created a model paratransit system in Allegheny County in 1979, and founded one of the commonwealth’s first independent living centers in 1984.1
Many more Western Pennsylvania stories have yet to be told. Prior to the Consortium’s founding in 2015 through a grant from the Pennsylvania Developmental Disabilities Council, relatively little of this history had been preserved and shared. With a grassroots understanding of the pressing need, members of Western Pennsylvania’s disability community came together to make it happen.
The Consortium conducts outreach to the twenty-six counties of Western Pennsylvania to identify historic materials and stories and takes timely steps to ensure their preservation. We encourage community members to think about the stories and materials they have and how they can take steps to preserve them (either on their own or with the Consortium’s help).
We are driven by the reality that undocumented records and materials are at risk of deterioration and loss, and sometimes held by people unaware of their value. In addition, older advocacy leaders who were directly involved in the twentieth-century disability agenda—those who possess the “community memory”—are aging and passing away. Capturing their stories is urgent.
Equally important is ensuring that the region’s history of disability rights is easily available to the public for education and advocacy. Our website (https://www.wpdhac.org) serves as a central resource for information about historic materials collected by the Consortium and its partners, as well as historic materials collected by other repositories. Our eNewsletter, social media and presentations to student, community, academic and professional groups reinforce the community connection. Our “Voices of Change” multimedia histories project highlights pivotal aspects of the regional story. Each year the Consortium sponsors or co-sponsors public events that explore the past, present, and future of disability rights topics such as employment, voting rights, accessible transportation, and community-based services. Public events such as “We Count: Pennsylvanians with Disabilities and the Right to Vote” and “No Longer Locked Away: Amplifying the Voices, Visibility and Legacy of Individuals with Mental Illness” bring the disability community together with community leaders to raise awareness of the historic and ongoing struggle for disability rights and to galvanize advocacy. They also provide a platform to highlight the work of emerging advocates and new ways of thinking about disability rights. “Action” is a part of WPDHAC’s name and mission. People with disabilities are a historically oppressed and marginalized population that has struggled to attain rights. People with disabilities experience high rates of poverty, unemployment, segregation, and abuse. Through events, presentations, and media, the Consortium uses historical materials to actively advance the inclusion of people with disabilities in their communities. These activities generate discussion of contemporary issues and promote policies and laws that ensure civil rights and social justice.
The Consortium is the only organization solely dedicated to Western Pennsylvania disability history. We received the American Association on Intellectual and Developmental Disabilities’ Hervey B. Wilbur Award for Historic Preservation in 2019. We are also included in the Society of American Archivists’ list of organizations that preserve disability history.
community partnerships
Strong community partnerships add viability and strength to the Consortium’s mission. As mentioned earlier, key relationships with the Senator John Heinz History Center and the Institute on Disabilities at Temple University provide access to knowledge, technical assistance, and collaborative opportunities. Achieva, a Pittsburgh-based disability organization, serves as fiscal sponsor for the project. The Arc of Greater Pittsburgh, a component of Achieva, is a key resource for the history of people with intellectual and developmental disabilities. The Pennsylvania State Archives is also an important partner and advisor, especially in regard to the public records of Polk and other state centers that are important to our work.
The Consortium’s Steering Committee has deep roots in the disability community and reflects a range of ability and disability, backgrounds, ages, genders, and experience. Our activities are led by, organized by, and feature people with disabilities. In keeping with our mission, activities are accessible (e.g. ASL-interpreted, open-captioned, readable by screen readers, etc.) so everyone can participate. A large circle of community advisors is involved in the organization’s work. We are also members of statewide and national networks of disability history organizations, such as the Pennhurst Memorial and Preservation Alliance and the Institute on Disabilities at Temple University. These relationships connect Western Pennsylvania to the larger narrative and plans for a national museum of disability history in Washington, DC.
community archives
The Consortium conducts outreach throughout Western Pennsylvania to identify sources of disability history, including personal stories and collections already in repositories. Through these efforts, we are aware of a large amount of important historic material that is not yet preserved in repositories.
An online survey of organizations and individuals throughout Western Pennsylvania, launched in 2016, has resulted in more than 100 leads on potential collections and requests for preservation guidance. In addition to the ongoing survey (available on our website and in our newsletter), we hear informally from members of the disability community about people who may have historical materials or be interested in being interviewed about their experiences. We follow up on leads and maintain a spreadsheet inventory detailing existing collections and potential donations of papers, photographs, film, and video, audio recordings, artifacts, oral histories, and other items, either to our archives or to other repositories.
The Consortium’s archives, which is digital-only, is small but growing. It includes video interviews with people who led or participated in advocacy, as well as interviews with people recounting personal experiences of disability, including institutionalization. Using these interviews and other sources, the Consortium produces its “Voices of Change” multimedia histories series. Stories in the series include a short documentary about Paul Dick (1940–2010), a person with disabilities who contributed to the effort to create accessible public transportation in Pittsburgh, and an interview with Father George Strohmeyer, a Catholic priest and one of the founders of L’Arche Erie, the first residential community of its kind in the United States. Other videos in the series include individuals with personal and professional connections to institutional history and renowned advocates who help create inclusive communities.
The Consortium’s digital archives also includes more than 100 commissioned photographs of Polk Center in Venango County, as well as more than 50 photographs and videos with permission for use in our ongoing efforts. For example, the archives include the original recordings for “Voices of Our Region,” a 2005 Allegheny County project featuring fifty-seven first-person interviews, and videos of a 2019 statewide meeting about the contested closing of Polk Center.
The Consortium collaborates closely with the Senator John Heinz History Center to physically preserve and make accessible to the public the archival collections, artifacts, and other materials that the Consortium does not have the physical capacity to preserve. Following leads from the community, Heinz History Center archivists and curators work with the Consortium to preserve many stories related to disability history in Western Pennsylvania. Links and finding aids to disability history collections at Senator John Heinz History Center are included on the Consortium’s website.
Examples of historic collections that reflect the Consortium’s collaboration with the Heinz History Center include the papers of Patricia Clapp, a renowned disability rights advocate; communication boards that predate the advent of electronic devices; posters from disability rights demonstrations; and artifacts from Polk Center. Historical materials collected by Heinz are shared through its museum collections database, online catalog, exhibits, and through the Historic Pittsburgh website hosted by the University of Pittsburgh Library System (see elsewhere in this issue for details about Heinz History Center’s disability history holdings and research opportunities).
Through our website, eNewsletter, and other media channels, the Consortium strives to ensure that Western Pennsylvania disability history is easily available to the public. Our social media and other online engagement efforts are growing. We regularly receive inquiries from researchers, educators, and others, and are frequently asked to present talks about our community-based work.
