12/07/2016

Dreamscapes for Public Disability History: How (and Why, and Where, and With Whom) We Collaborate

by Penny Richards and Susan Burch

Historians and collaborators Penny Richards and Susan Burch decided to use this blog space for an extended virtual conversation on public disability history. They invite you to join in the discussion.

PR: So, when people ask you about disability history and ‘the public’, how do you answer?

Black and white photo of Junius Wilson 
on the day he moved into his cottage at Cherry Hospital.
Wearing his favorite Washington football team’s baseball cap,
the elderly black deaf man sits in a wheelchair at the entrance
to the house, looking slightly upward to the photographer 
while holding another baseball cap in his left hand.  

Photo courtesy of John Wasson.
SB: The word that comes to mind is ‘accountability.’ Learning about Junius Wilson’s story, and now many stories of families and Native peoples impacted by institutionalization (including Canton Asylum, a US federal psychiatric institution in South Dakota) clarifies that our work can have significant human impact. My academic training engaged ethical issues narrowly. I don’t recall ever having direct conversations about what it meant to interpret people’s lives: to consider that our historical subjects--however long ago they lived--may have kin or others potentially reading our work now. A conversation with Faith O’Neil (who granted permission to share this) stays with me. Faith’s grandmother, Elizabeth Alexis Fairbault (Sisseton Wahpeton Sioux Tribe) was incarcerated at the Canton Asylum. Faith’s own research uncovered a published Asylum history. It was wounding. Pathological, racist labels from archival sources were left unquestioned, reinforcing stigmatizing depictions of Faith’s ancestor. The book’s public/published presence intensified the hurt. It gives me pause to think about the sprawling distance between “insane patient” and “grandmother” (and Elizabeth Fairbault’s other names, the names that acknowledge her full humanity).

I’m not suggesting that scholars shouldn’t express their own interpretations or avoid tough subjects. To the contrary. But actively considering how our work may--or may not--contribute positively to the communities we study is necessary, too. In its best moments this approach actively engages with broader social justice work, and in so doing creates more thoughtful historical projects.

PR: Accountability is an important ethical standard for disability historians. Even with mostly nineteenth-century projects, I sometimes encounter relations who are interested in the people I describe, because they have a personal connection. Most of my projects involve subjects who wouldn’t have had direct descendants--they’re the spinster aunts and bachelor uncles that don’t always come with stories in the usual local history sources. But if they do have family-generated stories, that’s really exciting. If we can fill in some blanks for each other, that’s an exchange that exemplifies why responsible interaction with community and family histories is so worthwhile.

SB: This seems directly connected to the ‘place’ where your work often appears: open-access, online sites. How does accountability show up for you in this context?

PR: When I write disability history articles on Wikipedia, I think of being accountable to the public who might come looking for stories out of need or curiosity. If a parent is just learning their baby is blind, for example, they may seek biographies to give them a sense of what the future might hold (and not just the hero stories), or articles to help them comprehend the array of programs, organizations and laws they’re encountering. I imagine the student who wants to write a school paper that includes histories related to their own experience of chronic illness. They need accurate and clear language, and links to good and accessible sources for more information. They’re the public I imagine being accountable to, on Wikipedia.

SB: That resonates loudly with me. Generating disability history that’s accessible to a broad public has interlocking benefits: changing the dominant story of disability and disabled people; offering more inclusive models for historical work generally; and inviting more people to come into this work. Accessibility extends beyond how the content is crafted, which is partly why I’m drawn to your engagements with Wikipedia. Sharing the work in accessible formats reduces common barriers that seriously limit the current reach of disability history.

In a somewhat related way, I’m wondering what you think about collaboration in disability history: you’ve collaborated on many different kinds of collaboration (editing other people’s work, co-authoring, synthesizing current works by others, participating in blog-fests etc).

PR: Ah, well, like this very collaboration, I think for me the hardest part is opening up my work life --which is also my home life. Collaborating with me means writing days rained out by seizures, or school calendars, or marching band practice, and that’s stuff I don’t love imposing on other people. But, on the other hand, I likely wouldn’t be so interested in disability history if not for this particular home life, which is also my work life. I guess that’s one of the “hazards” of collaborating across the campus wall--life out here is a little messier and noisier!

An oval-framed photo from about 1903, 
in sepia tones, of an older woman, 
Marion Brown, white hair parted in the center,
 wearing a black cap and dress; the 
photographer's cardboard frame adds 
a red border and the words "Jenner & Co."
I like working with people who have first-hand knowledge or connection to the subject--because I often don’t bring that to the project (I don’t identify as disabled, and I know other privileges can keep me from noticing what I should). I like being able to ask, “What does it seem like she’s really saying here?” and getting an unexpected answer. This happened with the Marion Brown project. I shared it with a group of participants in an MS (multiple sclerosis) program, and they had so many cool insights I couldn’t have reached solely from my own experience. They were animated to find a familiar story in a historical setting--because how often do the words and feelings of people with chronic illness feature in historical narratives, especially ones meant for a general readership? Now that the project has a blog, I get comments from knitters and cheese experts too, all contributing to my understanding of Marion Brown’s life.

Wikipedia is all collaborative. Anyone can rewrite your work, but much of the collaboration happens outside the articles themselves, in WikiProjects that create worklists to focus attention on a specific topic. I’m happy when folks come through and add tags and fix formatting and ask questions. That kind of collaboration has been helpful to me, because I know a group of like-minded volunteers is watching, reading and refining what I write, as soon as I write it--not a year later, when it maybe finally turns up in a print journal, too late to be changed. In general, I like the immediacy of collaboration online (like the format we used to generate this conversation!).

SB: I especially like our collaborations because there’s a strong level of trust (and fun, and activist experience, and shared love of dance). It supports making mistakes as part of the process. How many drafts have we workshopped, re-routing research and writing paths because our conversations revealed some key point?...

The immediate understanding that our work impacts us as people matters, too. Bearing witness to deeply human experiences--tender, lusty, funny, baffling, brutal, and mundane--imprints how and who we are. But it’s rare that (‘academic’) historians breach this topic, at least in public spaces. It’s in quiet hotel corners, living rooms, porches, and Skype chats I’m asked how feel about studying stories often involving significant violence and trauma. Friendship and support accompany the questions. But so do other yearnings: to navigate compassionately these kinds of complicated pasts and also navigate compassionately our own lives in the present. I imagine this as part of a dreamscape of public disability history that’s fully ‘being’ public disability history. Tell me more about how you imagine this--

PR: Both welcoming in and reaching out are important. For the reaching way out, I think there’s a pervasive cultural idea that working with people who have cognitive disabilities is something different from working with any other group, with children or older folks or across language obstacles; but it’s not a “special case”. Pedagogy is pedagogy, collaboration is collaboration, we look for common ground, we find starting places, we ask for help when we’re stumped. If written language and specialized vocabulary aren’t the best mode of exchange, maybe we gather in material culture, museum professionals, even visual artists and sound designers, to make disability history accessible. And we’d best approach both welcoming and outreach aspects of public disability history as opportunities for mutual exchange--not as a one-way interaction.

I’ve been glad to see disability as a theme in the StoryCorps project, and disability history too, through the Disability Visibility Project. The project at Swansea about disability in a mining society did some extensive and creative outreach too.

Can we have disability history booths at resource fairs? At equipment expos? At playdates at accessible playgrounds? Not here and there, but as one of the usual things that disability historians do? That’s my dreamscape.

SB: [Nodding enthusiastically]. A dreamscape that holds space for wide sharing of information and local in-person interactions: yes! And inviting more people to recognize disabled people’s active presence in big and small lived histories. The challenges of resources, of inaccessible environments, of contexts that work against these kinds of public connections..to return to a self-reflective process (and perhaps public disability community reflective process) of considering ‘who’s not here’ and why…

PR: Well, we’re on a blog, so we should maybe use the possibilities of the format here to invite others into the conversation now. As historians, I guess we’re always up for stories from real life. In comments, readers, we’d love to know your ideas for a public disability history dreamscape, for your experiences of collaborations across the campus wall, and the mutual exchanges that were successful (or at least lesson-filled). What are the barriers you’ve encountered? What rewards made it worth the effort?

Recommended Citation:
Penny Richards & Susan Burch (2016): Dreamscapes for Public Disability History: How (and Why, and Where, and With Whom) We Collaborate. In: Public Disability History 1 (2016) 21.

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