Going Public with Disability Stories: A Student Perspective

This post was written by Chelsea Jones. She teaches Writing for Disability Activism and was a panel member at the recent Activist Panel in July.

Activist Panel
Participants from left to right include: Ivor Shapiro (Chair, Journalism at Ryerson); Tim Alamenciak (reporter, Toronto Star), Marilyn Dolmage, Marie Slark, Pat Seth (Huronia Class Action Lawsuit); Chelsea Jones (doctoral student, Culture and Communications, Ryerson) and disability journalist, Helen Henderson.

Former residents of the Huronia Regional Centre have been fighting for years to make their experiences of institutionalization public. Huronia was a government-operated institution for people labeled as intellectually and developmentally disabled. The institution opened in Orillia, Ont., in 1876 as a branch of the Provincial Lunatic Asylum. A dark and complicated history followed, and bled beyond the institution’s closure in 2009.

Stories tied to Huronia’s history emerge now and again like scattered puzzle pieces that speak to the larger bureaucratic phenomenon of de/institutionalization. De/institutionalization remains a living process across Canada, still taking new forms as we re-imagine incarceration for variously labeled people in, or entering, mental health facilities, prisons, nursing homes, and so on. Huronia’s stories, however, are currently some of the most pointedly articulated. They are ripe with details from survivors, buzz from advocates, and suspense over government shortfalls as played out in the 2013 CBC Radio documentary The Gristle in the Stew . Huronia is the subject of a recent $35-million class-action lawsuit between the Ontario government and thousands of its survivors. It is also the site of the mysterious Child 1751  and a cemetery so far unmemorialized. Huronia is, indeed, the epitome of a provincial government’s “bureaucratic maze”  within which survivors’ slowly search for their own case files. And such public conversations about Huronia and the historic Class Actions Lawsuit settlement  are the topic of the 2014 Ryerson Annual Activist Lecture.

The Annual Activist Lecture this year was a panel discussion. The point of the conversation, as I understand it, was to tell the stories behind the public stories: to give opportunity for the audience to engage with journalists and those people whose photographs and words have accompanied much news coverage about Huronia. The panel filled in some of the widely acknowledged gaps  felt between disability self/advocates and journalists, who clarified their respective roles in reading, and contributing to, public conversations about Huronia. The panelists were Marie Slark and Patricia Seth, former residents of Huronia and litigants in the Huronia Class Action Lawsuit, and Marilyn Dolmage, the litigation guardian. Students also listened to Tim Alamenciak, whose writing in The Toronto Star regularly directs our attention to Huronia, and the bureaucratic complexities surrounding it. Helen Henderson, whose disability-related column ran in the The Toronto Star for nearly 20 years spoke, as did Ivor Shapiro, whose expertise is in ethics in journalism. The conversation reached across disciplines and into community — both locations where students’ work is decidedly situated, and sometimes notably absent, in public conversations about de/institutionalization.

I was also on the panel. My aim as a graduate student and as the instructor for the Writing for Disability Activism course  was to speak to students’ perspectives about what this discussion can mean, and where to take it. Below is a transcript of my portion of the discussion.

From a student perspective, as we are amid our studies and our jobs outside of academia, how do we bring stories about experiences of covering Huronia, and living at Huronia, back to ourselves? How do we complicate these stories and uncomplicated them for each other? And what kind of voice do we, as students, have a right to employ in this conversation?

Essentially, as receivers of the stories we also wind up capturing splinters of knowledge; these bits of knowledge dig into us and don’t let go easily, even if we look away. Just by being here now, we will take something away that will stick to us invisibility and insatiably. So, the questions from a student perspective are, I think: How on earth do we begin to think through the issues we encounter here in an active way — without being passive, and without letting go? What do we do now that we are implicated in the larger narrative process behind the Huronia Class Action Lawsuit? How do we continually read and circulate such stories and respond to them, especially if the experiences embedded in these stories might seem, at times, very far away from ourselves?

I suggest that one way to address these questions is to write our way into, and through, them. And, when I say “writing” I mean a very broad range of expression: You may have other ways of moving through your own curiosities, and you may have built a strong process for this already. But for those of us still a little unsure how to digest it all, I suggest narrowing the method to writing as a point of departure, simply for the sake of pinning down a place to start.

There are two sides to this suggestion of writing: First, there is the mere side of practicality. Although there are still many silenced stories, and we have limited access to them, there is simultaneously increased access to expression for people with disabilities and disability advocates, particularly through online venues. I understand that this access is a privileged type of access. But Tweeting, blogging, vlogging, and so on, are technologies that can serve to remind us of historically silenced perspectives. Second, there is the side of community (which aligns closely to affect). Because we are tangled up in the stories, writing can help us untangle a path through which we encounter the stories as a collective with a common cultural history.

In writing for disability activism, we try to understand the multiplicities behind each story. We ask questions like: How do people come to write the stories they do? What kinds of events unfold to get these stories to print, or to get them circulating? What do stories tell us about our cultural attitudes — do they point to fear of disability? To the abjection of people? And what do the people in question have to say about it? And, in the context of the stories we are receiving now: What does our own positionality tell us about the continuous pathologization of people labeled with intellectual/developmental disabilities?

These questions, in my opinion, are best answered by through backstories; we are fortunate to have the authors of some of them here today. By having insiders convey the answers to these types of questions we can more accurately establish our own positionality; the process of unpacking backstories helps us be in-relation-to stories, whether we are receiving them, responding to them, or echoing them.

As students present here, and now, we have two advantages in understanding these stories, and in conveying them in our own ways: The first advantage is location. We have access (albeit, limited access) to the stories and the spaces within which they take place. The second advantage is community. By community, I mean the possibility for conversations to get picked up, to circulate, maybe to go viral based on a somewhat unified understanding of de/institutionalization — by being here as a collective we will move certain stories out from isolation, and as students we can preserve their new locations and recognize them as contemporary cultural locations of disability.

Location was, in a great way, at play in 1960 when Pierre Berton, a famed Toronto Star journalist, made an impromptu visit to Orillia’s Hospital School (not yet named Huronia Regional Centre). In his article , Berton described finding nearly 3000 occupants jammed into facilities that, he wrote, “would be heavily taxed if 1000 patients were removed.” He described beds crammed together “head to head” on verandas, in classrooms, and in the playroom where there was no longer room to play. The paint was peeling off the walls, the roof leaked, and the smell seeping up from the wooden floorboards was unlikely to ever disappear even though overworked staff scrubbed the floors up to three times each day. “The stench,” Berton emphasized, “[was] appalling, even in winter.” Berton collected details and reported them to the world outside of Huronia. He could do this, because as an outsider — as someone not living there — Berton had the advantage of location; he could go there and expand our view of what Slate has described here as a “full time babysitting prison.” Herein lies the advantage of researching from the outside, and of looking into first-hand experience without having the (dis)advantage of having lived through the details. This is the positionality of many students, whose expertise is on the periphery, rather than in the center, but is nevertheless advantageous.

Berton ended his article with a passage that has since become notorious. He wrote:

“Remember this: After Hitler fell, and the horrors of the slave camps were exposed, many Germans excused themselves because they said they did not know what went on behind those walls: no one had told them. Well, you have been told about Orillia.”

Berton’s suggestiveness points to a rather tall order for those of us mid-way through assignments and perhaps emerging this morning from yesterday’s late night shift. However, one liberal way of reading Berton’s decree is to follow an old adage that teachers of creative writing like to recite sometimes: “Write what you know.” Well, now we know something — maybe not everything. But nobody knows everything. So write anyway.

Berton could move around the physical space, he could sense the people in that space, and he could leave with descriptive observations of what he gleaned would be their experiences. We, as students, are here in this space — this space being wherever you are at the moment both physically and in your head: What are our observations? What will you haul over your shoulder with you as you leave this place? What will slide to the back of your mind and perhaps be forgotten? What will stay behind? Consider where you are right now, and consider that the stories we encounter and absorb today are not only passages of the past; they can teach us how to encounter disability politics in the present. This very space is a cultural location of disability, and we’re knee-deep in it.

Meanwhile, Orillia is nearby. So, if we’re more drawn to a hands-on approach, we can indirectly follow Berton’s tracks.

We can work on balancing our attention on survivors and risks of re-institutionalization, and on the dead, as Marilyn has pointed out today. There is a cemetery  in Orillia with thousands of unmarked graves that some survivors visit. One of the activists involved in visiting the cemetery somewhat routinely, and trying to get it memorialized, is Leah Dolmage. She tells me that visitations to the cemetery for scholars are pending in September, though nothing is certain despite the survivors’ ongoing push for access. Dolmage suggests that as students from various disciplinary backgrounds — education, disability studies, journalism, and so on — we can find ways to really begin listening deeply and believing people with developmental disabilities whose stories are often left invisible unless they’re specifically requested. Further, some of our disciplinary backgrounds might lead us to study and expose the ongoing impacts of institutional violence on the self, on the body, on curriculum, on culture.

Also, there’s plenty of organizing to be done that can snap us quickly out of the abstract: Materials from Huronia remain disorganized and inaccessible, and the documents prepared for trial need attention and sorting through so the stories can materialize in more accessible ways. And as survivors age, it’s important to share oral histories; people carrying these heavy labels of developmental and intellectual disabilities need to be in on these conversations more often then on special occasions.

For some of us, being here right now is as close as we might get to the story. That’s okay.

There is plenty of work ahead that can include Huronia whether we are connected to public storytelling (read: journalism) or not. Consider researchers whose work doesn’t necessarily (to the reader’s knowledge, anyway) take them to particular locations, but fits into the communities they write for: That we are not alone, and that your perspective is not necessarily singular, again, are the advantages of community.

Last year, the Canadian Journal of Disability Studies published an article by Kate Rossiter and Annalise Clarkson called “Opening Ontario’s Saddest Chapter: A Social History of Huronia Regional Centre”. Throughout this article are traces of process: the research, the editor’s voice, the writers as storytellers — perhaps reciting a history not necessarily their own. The purpose of their writing is to make sense of the social history leading to the class action lawsuits — not to focus on life stories, biographies, or material analysis. The authors address intersections between Orillia and practices of eugenics, as well as public concern, and an eventual public embrace of community living.

In following Rossiter and Clarkson’s example, one way to approach a response to the stories told today is to focus on one part of the story despite narrative gaps in order to keep these conversations going after we leave this panel — in other words, we don’t have to know everything or cover everything in order to write. Arguably, there are rather complex, non-biographical angles worth your study, and angles that are tough to publish with a journalistic byline. Perhaps these angles, and the ideas chiseled out of them, are more suitable for an essay that would help you swallow the situation less bitterly as you move through your academic and professional lives. Or maybe your writing will preserve and punctuate the bitterness. Either way, by collecting the stories in your memory, and using them in your respective praxis, students contribute to a larger, collective cultural memory that includes Huronia and the issues that intersect with it.

Community is also important because we also know that Huronia “stood as a pillar for specialized care for persons with [intellectual disabilities] in Canada” (Chupick & Wright, 2006 in Rossiter and Clarkson, 2013, p. 3). What might come from these stories, then, and from the lawsuits that provide information about the maltreatment of people, will open the floodgates for other stories.

When Berton visited Orillia, he reported that the waiting list — the number of families hoping their children would have a home at Huronia — was 4,000 signatures deep. How long are our waiting lists for contemporary housing situations such as group homes and nursing homes? How many people with disability labels are in prison? What are the current cultural locations of disability today, and what is their proximity to those cultural locations of disability that have been described today? As students, we can be attentive to potential connection between now and then; we can, as Dolmage mentioned to me, refuse to say that this is all in the past.

What’s more: the past intersects with the present. For example, there is an institution outside of Moose Jaw, Saskatchewan, called Valley View Centre (VVC). VVC opened its doors in the 1950s. Today it houses 189 people. Many people living there have spent 30 to 40 years at the centre, which is set to close by 2016. As Valley View closes, staff fear the loss of hundreds of jobs, and families fear that the institutionalized people they care about will never fit into the community. These are the same fears articulated in the 1980s when the Ontario government began publishing their intentions toward de-institutionalization.

There is a researcher at the University of Regina who is allowed access to VVC. Randy Johner’s research involves interviewing 15 people who are moving from VVC to community homes in the next two to four years — these are pre- and post-move interviews. She includes folks who have limited or no verbal language, and who are using other means of communication. Let me emphasize one aside: The inclusion of people who communicate in non-normative ways is utterly essential to the larger conversation at hand; I would encourage anyone whose research moves them in that direction to keep digging deeper, for this type of communication research is desperately needed. Anyway, in an email to me earlier this month, Johner wrote, “preliminary data analysis suggests a strong disconnect between what staff feel folks are wanting and what VVC folks are saying and feeling about the move and what they need.” By my reading, her findings may risk being extremely contrary to what the union (CUPE 600-3) at VVC is campaigning  for: to keep the institution open and to preserve jobs.

As we progress through our respective programs, where will our research take us? Who can we support in other areas? What kind of support will we have? How far can we carry-over what we’ve learned here?

The panelists here shed light on the multiplicities of the stories about Huronia, and about larger issues that intersect with the biographical and journalistic accounts of Huronia. By being here, as students, we get to be part of the conversation. And the conversation helps us round out our understandings, and focus our scholarly and vocational attention, and to carve through our ideas more ethically then we might outside of the conversation: We begin to think about Huronia in an active way, but writing and by communicating with whatever venues are available to us; We have a voice that is part of a larger disability activist community; And, as we continually read and respond to the types of stories we encounter today, we can thoughtfully assess our positionality and work within our own particular cultural locations of disability, and from these points, our expression can take several forms.

Writing for disability activism is not easy. It’s downright complicated. But it is a process that urges us to begin encountering the experiences behind and ahead of a discussion like this one from a student perspective.

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