Rethinking Disability

Image 1: Digitised slide of Het Dorp resident Josje Matser in a wheelchair sitting at a table at the Sewing Ring, working on a sewing machine. Date unknown [1977-1985]. Property of Siza.

My respondent told me about Gerrie while we sat at her dining table, the May sun shining abundantly outside. The wedding of Gerrie’s favourite brother was coming up, so she had come to the Sewing Ring for a tailor-made outfit. Gerrie and my respondent customised her lurex stockings and made a high waist dress that flattered her short stature. She paired them with child-sized patent leather shoes and lilac earrings that matched her dress. Delighted with her festive outfit, Gerrie went to the wedding at Arnhem’s city hall. When the family was about to move upstairs to the wedding chamber, Gerrie’s favourite brother had stopped her when she was making her way to the elevator with her wheelchair:

“You just stay downstairs, otherwise you will be in all the pictures.”

My respondent paused and leaned back in her chair, observing my reaction to her anecdote. This is what I live for as an oral historian: those moments of narrative and performance blending together perfectly, revealing a slice of my respondent’s inner world.

I had been invited to my respondent’s house to talk about the 25 years she had coordinated the Sewing Ring at the Activity Centre of Het Dorp. This accessible neighbourhood was built after the first ever Dutch telethon in 1962. Het Dorp offered people with severe physical disabilities access to a place of their own, 24/7 care, work, recreation, and co-determination about their own lives and living environment. In my PhD project, I use oral history and archival research to learn more about the residents’ disability identity, social views of disability, and the way Het Dorp influenced both. I’m particularly interested in meaning-making processes of Het Dorp residents regarding sexuality and self-expression through fashion, theatre, and music. My respondent’s anecdote about Gerrie illustrated this dynamic between residents’ self-perception and the perception of the outside world. Creating their own tailor-made clothes at the Sewing Ring enhanced Het Dorp residents’ self-esteem, self-acceptance, and autonomy. However, this did not necessarily change the view of society (or even close relatives) of them.

Text continues underneath picture

Image 2: Digitised slide of a group of Het Dorp residents and employees of the Sewing Ring around a large table filled with sewing machines and couture materials. Date unknown [1977-1985]. Property of Siza.

Doing disability history as a disabled historian

During the Oral History seminar of the Huizinga Institute on April 19, 2024 I presented various audio fragments from the interview with this particular respondent, including the anecdote about Gerrie. I noticed that as the interview progressed, the stories my respondent told me started to change. Or rather, the way she told me her stories started to change. In the anecdote about Gerrie, she addressed me as an outsider. In another anecdote, however, she suddenly implicated me in her narrative. When talking about society’s negative perceptions of certain disabilities, she said:

“I think our society very easily dismisses people. For example: you drool. Your posture is normal otherwise, but you drool excessively. So, someone puts a bib on you. Someone who does not know you then immediately sees: that person drools. They don’t see: this is Eline, they study in Amsterdam, they’re curious, they’re a beautiful young woman… They only see: you drool, you’re disabled. And you’re dismissed.”

Something interesting is happening here. By casually inserting me into her argument, my respondent implicitly reveals the way she perceives our conversation and me. In other words: she points to my positionality. Positionality here refers to the group identities I brought to the interview, in my case: disabled (disclosed prior to the interview), queer (not disclosed), early 30s (not disclosed, but visible). The way my respondent’s argument is structured, presumes that society understands disability as incompatible with intelligence and beauty. Despite knowing that I identify as disabled, she inserts me into the argument in a way that erases my disabilities. This might indicate that according to my respondent, society does not perceive me as “really” disabled, or at least not in the same way as Het Dorp residents. By subtly invoking my positionality, she underpins her argument that the visibility of disabilities has a major impact on societal views on disability.

My positionality as a disabled disability historian was one of the key topics of the Oral History seminar, both in my presentation and in the discussion afterwards. I was lucky to attract a crowd with a wide variety of perspectives: seasoned oral historians, former residents of Het Dorp, and scholars with disabilities. During my presentation, I talked about potential opportunities and risks that being an insider in the world of disability brings me as an oral historian. During interviews with Het Dorp residents our disabilities, assistive devices, and shared frustrations about bureaucracy, stereotypes, and obstacles work as an icebreaker. Sharing these lived experiences with my respondents helps me establish rapport and build trust. I also talked about my insecurities and doubts as a disability insider. How much can I actually relate to my respondents, having never lived in a high care environment like them? How does my understanding of my own disabilities influence the ways I understand my respondents? How to deal with the power dynamics that come with being an academic not wanting to talk about people but rather with them?

Text continues underneath picture

Image 3: Digitised slide of Het Dorp resident Wil Goos in a wheelchair sitting in front of a full length mirror at the Sewing Ring, a piece of fabric draped across her body. Date unknown [1977-1985]. Property of Siza.

Scholar versus activist

During the discussion, the audience noticed something I had not realised before. In my daily life I deliberately refuse to disclose personal medical information about my disabilities, as a way of making an anti-ableist, political statement: I do not owe anyone an explanation for my “otherness”. During my oral history interviews, however, I do sometimes choose to disclose when respondents ask about it or when it seems relevant to the conversation. Realising this discrepancy caught me by surprise. How to make sense of this clash between my disability history scholar identity and disabled activist identity?

Due to the diversity of professional and lived experiences in the audience, a productive and supportive conversation evolved. Several audience members recognised the fluidity of boundaries in interview settings, both regarding disability and other areas. For some respondents, it can be quite a vulnerable experience to speak about personal experiences with a near stranger. Informing about the interviewer’s personal life can then be understood as a transactional exchange, a building block for mutual trust, or a token of respect. In other cases, directly involving the interviewer in their story points to a deeper layer in the respondent’s narrative – like the drooling anecdote. I reflected on these remarks and wondered how I should deal with this dual scholarly and activist identity in my own oral history interviews. One audience member asked me: “Must these two identities always remain separated? Can they perhaps coexist in the interview?”

There is so much richness in the messy, entangled parts of ourselves and our stories. Some of the most interesting oral history analyses originate precisely in these discrepancies and contradictions, pointing us to tender points in individual and shared histories. Take for example the silencing of certain interpretations of events because they went against dominant versions of history. Oral history not only welcomes these alternative stories, but also uses them to rethink popular memory and power dynamics. Extending the insight and grace of multifacetedness with which we approach our respondents to ourselves as interviewers may not be easy, but definitely rewarding. Reflecting on positionality together with academic peers, in our published writing, and even with some of our respondents – all pieces of advice I took away from the seminar – deepens our practice and strengthens our work.