Civic Engagement and Public Policy Research Fellowship Program, 2011-2012
David A. Gerber, UB Distinguished Professor of History, Director UB Center for Disability Studies (2009- ).
Michael A. Rembis, Adjunct Assistant Professor, Department of History, Associate Director UB Center for Disability Studies (2010- ).
An Oral History of the West Seneca Development Center (1961-2011), West Seneca, New York
We seek seed-money for the first stage of a multistage, multiyear oral history project that explores the institutionalization and deinstitutionalization of people living with physical and developmental disabilities and psychiatric labels in the late twentieth century. In the first stage, the project will be regionally based, but we intend this project to grow into a nationally and, through development of a Canadian perspective, internationally focused project. Grant money to finance major oral history projects within the immediate past has been made available by: the National Endowment for the Humanities (Public Programs); the Ford Foundation, the Gannet Foundation, the General Mills Foundation; the Heinz Family Foundation; and the William and Flora Hewlett Foundation. We intend to investigate, and where applicable apply for a grant from those or other foundations.
The initial stage will encompass oral history interviews with residents and family of residents, management, and employees directly involved over five decades in the West Seneca (NY State) Developmental Center, and with regional disability service professionals in the private sector, who worked with the state in the operation of the institution. The subject of these interviews will be the problem of deinstitutionalization, encompassing, from multiple perspectives, the goal of life in the community, and the transfer to group homes managed by private agencies using state funds, or to life resumed in the family home, with services publicly subsidized making that possible. After years of a decline in its residential population, the final closing of West Seneca Developmental Center represents the demise of a modern model of institutional care that had been faltering throughout the late twentieth century, because of both the costs involved in maintaining large facilities and the well-founded objections to removing people with physical and developmental disabilities and psychiatric labels from the community.
This is a timely moment to address this history. Public support at the state level through legislative appropriations is declining for disability service provision. Due to the ongoing fiscal crisis of the state, deinstitutionalization proceeds rapidly, but so, too, does the decline of public support for what was mostly offered to replace it, via a process sometimes referred to as transinstitutionalization, the smaller, community-based group homes and development centers that have provided an alternative to the large state institution. We intend to offer the research products from this oral history project as a foundation for supporting, through regional seminars, a museum exhibit and uncovering the forgotten voices of disabled individuals and their families, the important, public conversation about what comes next in disability service provision, and hence in societal support for the full integration of people with disabilities into the community.
To the extent that the history of West Seneca Developmental Center may be reconstructed from printed sources, our methodology is not to reconstruct a factually-based narrative history of the institution, but instead, through open-ended interviews, to reconstruct the qualitative experience, from a variety of perspectives, of life and work there. Open-ended interviewing is guided by an agenda set as much by the interviewee as the interviewer. We will develop a roster of interviewees through soliciting participants via notices in the local press, including community newspapers, and electronic media, and through suggestions from those we have already interviewed as well as from individuals engaged in disability service provision agencies, such as People Inc. People Inc., which has a close, cooperative relationship with UBCDS, worked closely with the institution in matters such as the placement of individuals in community housing.
Three months into interviewing, we will convene an advisory committee of UB faculty to offer us criticism and suggestions based on analysis of the interviews we have done. Among those from whom we have and will continue to seek counsel is UB's Michael Frisch, widely regarded as an international authority in the practice of oral history.
Michael Rembis and David Gerber will conduct interviews, and they will train advanced graduate students from the Center for Disability Studies Interdisciplinary Masters Program (approved July, 2011) to do interviewing, based on this open-ended model. A mechanism exists within our curriculum for providing students in the final year in the program with course credit for work in public history.
Application will be made before the UB Institutional Review Board for clearance to do this interviewing.
Nature and Relevance of Partnership for this Research
Our partner is the Museum of disAbility History. A project of People Inc., the Museum of disAbility History in Amherst, New York is the only traditional, brick and mortar museum in the world dedicated to the history of disability. UBCDS has an established relationship with People Inc., at whose initiative the Center was created. Part of the intention behind People Inc.'s interest in establishing UBCDS was to find a partner to assist the museum in establishing itself as a professionalized institution, with solid foundations in museum practice and in historical representation. This project will certainly benefit the museum, in multiple ways, from those perspectives. First, an exhibit is projected for three years hence on the history of the large publicly funded institution, with emphasis on its functions, appraisal of its contributions and failures, and the narrative of its demise. Second, copies of interviews will be housed not only at UB, but at the museum, which is building an archive of disability history for use in scholarly research in the history of disability. Third, the museum has extensive meeting space, which will serve as the locus for the series of conferences we wish to hold that will feature oral history as a means to stimulating conversation among all the relevant parties on the future of disability service provision in light of the recession of the role of the state. The benefits to UBCDS in this collaboration lie in the unique opportunity to combine public history (an exhibition) and traditional history (collecting oral testimony) in a single project, and make the results of both available simultaneously to the community in the hope of stimulating discussion among interested parties.
Expertise of Faculty Applicant(s)
Both Gerber and Rembis have published extensively in the History of Disability. Rembis has been directly involved with the subject of institutionalization in his recently published book, while Gerber's work on disabled American military veterans has implicitly used rehabilitative institutions as a background in the analysis of blinded and of amputee war injured veterans. Gerber has done extensive oral history, using the open-ended model of interviewing, with blinded veterans of World War II and with the iconic figure of World War II disabled veterans, the bilateral hand amputee, Harold Russell. Neither topically or methodologically is this project a point of departure for either principal.
Anticipated Work Products for This Project
The anticipated work products of this project are (1) oral history transcripts that contain machine readable indexing features to facilitate use (dependent on grant applications) in research, publication, conference participation, and museum exhibit development. A collaboratively produced volume combining oral history transcript selections and museum exhibit features is contemplated, as is a collection of papers and presentations from the conferences organized around the themes of institutionalization, deinstitutionalization, and transinstitutionalization.
Plan to Disseminate Research Results back to Collaborator, and to Inform Policy and/or Practice
We have spoken to these points above. We will add here the observation that there is a great concern at this moment in the community formed around disability about the future of public funding for services and advocacy for equality, opportunity, and integration of people with disabilities. To that extent, we believe the project presented here is not merely timely, but essential to using history as a basis for helping to establish a thoughtful and concerned public discourse.