In January 2024, I was asked by Dr. Joanne Woiak to testify to the state legislature in support of State Senate Bill 6125, focused on developing a preservation plan to protect the records of Lakeland Village Habilitation Center from being destroyed, since they were at the end of their retention period, and starting the development of archiving these documents and items for the public. In March 2024, a modified form of the bill was passed and signed by then-governor of Washington State, Jay Inslee. The bill allowed the University of Washington and other state groups to develop a plan for organizing an archive on Lakeland Village. This project has the potential to include and/or center the lived experiences of people with intellectual and developmental disabilities who have lived within the facility.
From my involvement in testifying for this bill, I later focused my disability studies capstone on exploring how archivists and professionals from around the country have preserved and archived collections related to institutions for people with disabilities and interviewing them about the political, social, and financial challenges they experienced in their projects. Between testifying for the bill and completing my disability studies capstone around this project, I decided to focus my library and information science capstone on related topics.
To view the preservation plan for this project submitted to the state legislature, please click this embedded link. This report features some of my capstone research in addition to resources to other projects, some of which are not highlighted on this page.
Below is a list of resources to projects conducted around the country and organizations that focus on preserving the memory and records of institutions, while educating the public on the topic of institutionalization.
Austin State Hospital
Location: Austin, TX
Established in 1856 and presently open
Archiving Neurodiversity was a project between the Austin History Center, the Hogg Foundation, and the HHSC State Hospital System that focused on preserving the history and records of Austin State Hospital and on navigating public access to and education about archival records while balancing privacy laws, regulations, and ethics. To learn more from the research team on this project, please visit this embedded link.
Central State Hospital
Location: Petersburg, VA
Established in 1870 and presently open
The Central State Hospital Digital Library & Archives Project is a digital archival collection and project that explores the institutional history of Central State Hospital (formerly Central State Lunatic Asylum for Colored Insane), which was a long-segregated psychiatric institution for African Americans. The project is a product of a collaboration between The Andrew W. Mellon Foundation, The University of Texas at Austin, and the National Association of State Mental Health Program Directors.
This digital exhibit provides an overview of the institution’s history. Still, it does not give a public view of individual patient files, as that information is subject to various privacy protections and is stored in a dark archive (an archive inaccessible to the public).
To view this project, please visit this embedded link.
Pennhurst State School and Hospital
Location: Spring City, Pennsylvania
Established in 1908 and closed in 1987
I would like to highlight two projects focused on this institution.
1st Project: File/Life
File/Life was a project by Temple University’s Institute on Disabilities, in collaboration with The Pew Center for Arts & Heritage, which was a community archivist-led project focusing on making creative interpretations of former Pennhurst residents’ lives. The project explored the issue of institutional records containing only demographic and medical information about residents, excluding details of hobbies, interests, passions, etc., and creating “files” that showed the personhood of the residents.
Below is a list of links to learn more about the project:
- Temple University’s project page (embedded link)
- NBC Philadelphia segment (embedded YouTube link)
- CBS segment (embedded YouTube link)
- Article from University of California Press on the project (embedded link)
- Each + Every site showing pictures from the exhibition (embedded link)
2nd Project: Pennhurst Memorial and Preservation Alliance
Pennhurst Memorial and Preservation Alliance is an organization made up of disability advocates and activists with various relationships and ties to Pennhurst School and Hospital, whose mission is to “promote an understanding of the struggle for dignity and full civil rights for persons with disabilities, using the little-known history at Pennhurst.” The organization provides exhibits both on the institution’s site and traveling exhibits that are part of their mission of community education regarding the history of abuses and institutionalization of people with disabilities. For more information about this organization, please visit this embedded link.
Western Pennsylvania Disability History & Action Consortium
Western Pennsylvania Disability History & Action Consortium is an organization focused on “preserv[ing] and shar[ing] the region’s powerful history of disability rights advocacy through [their] projects – using presentations, media, exhibits, and events to educate the public and strengthen community knowledge.” Main projects of theirs include collecting oral histories of people with disabilities in the region and making archival collections related to local disability history accessible online to the public. To learn more about this organization, please visit this embedded link.