Representation

In the first iteration of my capstone project, I wanted the theme to focus on the archival representation of advocacy for people with intellectual and developmental disabilities in Washington State. Unfortunately, when visiting archives across Western Washington and reaching out to local organizations, I was not able to find enough materials to center the exhibit on the local activism of people with intellectual and developmental disabilities. Because these items were not present in the archival collections I examined, I decided to focus on archival silences and archival partialities. 

The Society of American Archivists defines archival silences as a “gap in the historical record resulting from the unintentional or purposeful absence or distortion of documentation”. Meanwhile, Dr. Gracen Brilmyer, an Assistant Professor at McGill University’s School of Information Studies and the Director of the Disability Archives Lab, describes archival partialities occurring when “when we do find a disabled person in the archives … but the evidence we find is not just partial, but partial in a way that undermines the person’s personhood, autonomy, and agency”. In their article, “Towards Sickness: Developing a Critical Disability Archival Methodology,” they offer this definition alongside an anecdote about struggling to find disability representation in the archival repository at The Field Museum of Natural History in Chicago. After a few hours of searching and not finding anything on their own, they asked the staff if there were any records related to disability. The only representation found during the visit was a scrapbook about Maurice Tillet, a disabled boxer whom Henry Field, the namesake of the museum, created out of fascination with Tillet. The scrapbook featured pictures and articles from throughout his career, viewing him as a “medical anomaly,” including a photo of Tillet standing next to a caveman diorama at The Field Museum in 1940, which focused on the size of his hands and head. This archival item did not include any narratives or perspectives from Tillet, preventing the archival user from learning about Tillet’s personal experiences.

Similar to Dr. Brilmyer, many of the items that I came across through my own archival research contained the narratives of people without disabilities who were family members of people with intellectual and developmental disabilities, lawmakers, and organizations, often regarding the presence of residential habilitation centers (RHCs), a name for state institutions in Washington State for people with intellectual and developmental disabilities.

While visiting the Washington State Archives in Olympia, I found it overwhelming how many documents, photos, and other archival items were in the collections I examined. The following transfer letters were found within a sizable stack of similar letters to the point that the file was overflowing. All of these files were unrestricted to the public. In these letters, we learned a great deal of personal information about each resident: their name, birthdate, age at admission to Lakeland Village RHC, and possibly medical or behavioral concerns. However, we did not know what these individuals looked like, what their support system of friends or family consisted of in their lives, or what their interests, passions, or life ambitions were, or acknowledged the lack of societal and community support to the individual’s support system that led to them being admitted into the RHC system. These letters only conveyed to me a narrative that stripped away their personhood and told me that people with disabilities and their support systems were not going to be supported while living in the community with their families, from our country’s government and community structure.

Below are letters between the administrative staff of Lakeland Village (one of the four state RHCs; located in Medical Lake, WA) and the state director of residential habilitation centers in 1949, Van R. Hinkle, communicating intake of infants, children, and teens with intellectual and developmental disabilities from the community to Lakeland Village or Rainier School, residential habilitation centers in Washington State. Below are the redacted letters:

As about 99% of the documents and archival items that I found about people with disabilities in Washington State archival collections were not from the perspectives of people with disabilities, one item I found in Seattle Municipal Archives stood out to me, a poem titled “A Credo for Support”, written by Norman Kunc, a therapist, educator, and community activist with cerebral palsy living in Canada. This poem encapsulates empowerment in disability identity and sees the personhood of people with disabilities. Unfortunately, this was the only item I came across within my research that positively portrayed disability and was from the perspective of a person with a disability. I believe there should be more archival representation of people with disabilities, and including disabled art, such as poetry, would be an easy way to represent people with disabilities.

Below is the “Credo of Support” copy I found in Seattle Municipal Archives:

Much like physical barriers that keep people from using archival spaces, people may not feel welcome when the language used to describe them and people of shared identities is used to describe items and collections.

As a developmentally disabled archival researcher, I find it uncomfortable that many of the collections I needed to look at for my research use harmful language to describe myself and others with developmental disabilities. 

The reason why it is uncomfortable is that some of the same harmful language is still used regularly by many people in society today. The language in archives reflects what many in society still consider acceptable today.

Take these side-by-side examples:

Potential Solutions

The first solution is that archives have sensitivity statements in the opening page of their digital platforms and on their physical site before patrons view in-person collections. The statements should specifically list ableism as one of the forms of harmful language within their collections.

Secondly, archival professionals should update the names and descriptions of their collections to not include the outdated and offensive language, but link the outdated terminology to the item behind-the-scenes so the archival user can find related items regardless of the search words. For example, if I wanting to learn more about the Child Development and Mental Retardation Center (now the UW Institute on Human Development and Disability), I would have to type that specific name into Archives West within UW Libraries Special Collections to find the collection titled “University of Washington Child Development and Mental Retardation Center, Rehabilitation Studies Office records, 1959-1991.” However, with my suggested solution, a user could type in “developmental disability center 1960s” and have the collection pop up as one of the top results.

Photographs

When deciding how and whether to use photographs in developing the exhibit, I had to ask myself many ethical questions, and many discussions took place before and during the placement of the exhibit. Some questions that I had to ask myself along the way were these:

• If a photo is completely unrestricted in archival collections, is it ethical to include it in the exhibit?
• Is it okay to show the public unrestricted archival photos of people, including institutionalized individuals, if you do not have consent from the individuals or know if they are living? By doing so, are you only perpetuating and pushing institutional narratives, or is showing the pictures an effective tool in public education? Is there any additional written context that could be presented alongside the photos to improve the ethical basis of the presentation?
• What names should be redacted in documents shared to the public? Should the names of residents of RHCs be redacted, as in the transfer letters? Should staff who were not administrators have their names redacted? 

I cannot tell you exactly what the universal answers for these questions should be because many scholars in various fields still argue about these questions are only restricted by privacy laws of their states, country, and fields of study (ex. HIPAA, FERPA), As more people start to use these archival materials in professional and academic settings, these questions will hopefully become more commonly asked and more conversation will take place.To learn more about these ethical questions, I highly recommend reading Dr. Susan Lawrence’s Privacy and the Past: Research, Law, Archives, Ethics or David Wright’s and Renee Saucier’s article titled “Madness in the Archives: Anonymity, Ethics, and Mental Health History Research.”

Personal Testimony

Over many months of planning and putting together my capstone project, I was trying to solidify my plan for the specific topic of my project and the components I wanted to feature in my exhibit. One component I wanted to include in my capstone exhibit was personal testimony statements from local disabled activists with intellectual and developmental disabilities.

After months of bouncing between meetings with my project sponsor and my program advisors, I learned that with all of the legal and logistical hoops I would have to jump through to ethically obtain testimony through IRB (Institutional Review Board) approval would not be able to fit my timeline of presenting my exhibit in March, when I was starting to look into starting the process in November. 

Some of the significant steps in the process of getting IRB approval were:

• Deciding for myself whether collecting testimony fell under the category of “research” with the Human Subjects Division of my university, and if it did, following the required steps for IRB approval
• Completing the training needed for working with human subjects
• Selecting a sponsor for the IRB
• Completing the necessary paperwork of specifically working with people with intellectual disabilities and only taking testimony from people who can legally consent in being involved

As many researchers who have worked with the intellectually and developmentally disabled community can attest, there is plenty of (justifiable) red tape around being able to include people with intellectual disabilities in studies. Socially and legally, people with intellectual disabilities are viewed as not being able to consent to participating in studies because it is generally believed that people with intellectual disabilities do not have the cognitive ability to understand the study’s goals and risks fully.

Additionally, many people with disabilities, who could potentially be project participants, may legally be under the guardianship of another individual, giving complete control of whether the person participates to their guardian. 

After disturbingly discovering an archived research proposal from the late 1960s of a PhD student proposing starving people with intellectual disabilities for several days to observe their social and emotional responses, I understand why there has been increased concern and regulations around involving people with intellectual and developmental disabilities in studies over the decades. Historically vulnerable populations, such as people with disabilities, have been abused and manipulated by researchers and larger institutional bodies who did not have their well-being in mind when involved in human subject research.

While in a class my last year of graduate school, I focused on exploring issues of access and representation of disability in history and archives, I read Dr. Claudia Malcrida’s article, “Contested Memories: Efforts of the Powerful to Silence Former Inmates’ Histories of Life in an Institution for ‘Mental Defectives’”. While conducting research for an oral history project seeking testimonies from former residents of Provincial Training School in Alberta, Canada, she encountered significant roadblocks in obtaining these histories. As many of the former residents of this institution were wards of the government, the government had extensive oversight and authority over whether she could speak with former residents of these institutions about a former government-run institution. This means that governments and guardians of people with disabilities, who often do not share similar identities of disability and have experienced ableism directly, greatly control the narrative of what stories are told and valued for future generations to learn from.