First Wednesdays Lecture Series

Free talks on the first Wednesday of the month, October through May.

Telling Disability Stories: Histories, Representations, and Imaginations

The meaning of “disability” shifts across time, places, and cultures. In spotlighting stories centered on disabled people, Middlebury professor Susan Burch draws on history, popular media representations, and inclusive design practices to reimagine our past, present, and possible future.

Transcript

Note: This is a lightly edited transcript of the live event.
January 13, 2021

CHRISTOPHER KAUFMAN ILSTRUP:  Welcome, everybody.

SUSAN BURCH: It’s always a joy to see the cascade of screens with people’s faces and sometimes names entering into an event. Welcome.

CHRISTOPHER KAUFMAN ILSTRUP:  We’re going to give folks a couple of minutes to get here. I’m going to continue to let people in from the waiting room, and we’ll start at about 2 minutes after seven.

SUSAN BURCH: Just letting you know we’re holding some space so that others can join the conversation.

It’s wonderful to see you all showing up tonight, welcome.

SUSAN BURCH: While we’re getting for others to join us, if you are willing to give an emoji thumbs-up or a visual thumbs-up: how’s the energy level?

Thumbs-up means “I’ve got a lot of energy for this.” And a little bit lower down is “Go gently. It’s been a long day.” And thumbs-down is, “I’m tired but I’m here.” [Pause, reads the visual feedback]. Thank you. It’s immensely helpful to get a sense of how we’re doing.

CHRISTOPHER KAUFMAN ILSTRUP: We’re going to give it one more minute, and then we will begin the program. Okay. I think, Lucinda, we should get started.

LUCINDA WALKER: Okay. Hello, everyone. Good evening.I am the director of the Norwich public library, with Sarah Rooker, who’s waving now. We are delighted to welcome you to first Wednesdays on the second Wednesday. And we’re glad you’re joining us tonight.A little housekeeping. If you have questions, please feel free to use the chat. Tonight’s presentation is being live-captioned. If anyone would like to access the captioning, at the bottom of your Zoom panel you will see a CC, and it will say “live transcript.” If you click on that, you can choose “show subtitle” and our captioner, Kathryn, who will be captioning tonight, you will get to see her work in the moment. I would like to say that we are thrilled to be part of the First Wednesdays, a program of Vermont Humanities Council, sported by the Institute of Museum and Library Services. And the Historical Society and the Library would like to thank our local sponsors, which include the Friends of the Norwich Public Library and the Historical Society.

I’m going to turn it over to the executive director, and he will move us along. So thank you.

CHRISTOPHER KAUFMAN ILSTRUP:  Thank you so much, Lucinda. I’m happy to be in Norwich from my house in Montpelier. And understanding of the need to have space last week, for most of our presenters and partner libraries. The first thing that I want to do is acknowledge that Vermont Humanities does work on Abenaki land. We recognize those that lived here long before Europeans arrived. We are learning every day. Why did we acknowledge that Vermont is founded on Abenaki land? We believe it’s important that all people understand that this land was stewarded by the Abenaki people for thousands of years before the arrive of Europeans. We can’t tell real stories about Vermonters without acknowledging this. I’m pleased to be welcoming Susan Burch.

Susan is a professor of American studies. Before joining the Middlebury College faculty in 2009, she taught at Gallaudet, and at the Ohio State University. Professor Burch has worked at the Smithsonian National Museum of American History. She is the author of Signs of Resistance: American Deaf Cultural History, 1900 to 1942; co-authored with Hannah Joyner Unspeakable: the Story of Junius Wilson. She’s co-edited Deaf and Disability Studies: Interdisciplinary perspectives (with Alison Kafer), and Disability Histories (with Michael Rembis). Susan also served as the editor-in-chief of the Encyclopedia of American Disability History. Her newest book is Committed: Remembering Native Kinship in and Beyond Institutions.  She’s received awards, including an American Council of Learned Societies Fellowship, National Archives Regional Residency fellowship, and National Endowment for the Humanities grants. We’re pleased to welcome her here. I want to acknowledge that this particular talk is cosponsored by Middlebury College and the Mellon Foundation. I also want to point on the that there are a series of events coming up on civic engagement by Vermont Humanities, starting with an MLK commemoration event this Sunday at 3 p.m.  A series of why it matters, also sponsored by the Mellon Foundation. There will be one on the Electoral College, and a third around the importance of debate. An event this Friday, the world premiere of the film The Quality of Mercy, created with a CARES Act grant to Get Thee to the Funnery. There’s information on you will of these events at our website at Vermonthumanities.org. I hope you join us. We’re pleased to welcome Susan. We’re delighted to be here in Norwich. With that, I’ll turn it over to you, Susan.

SUSAN BURCH: Wonderful, thank you so much. I especially want to extend my gratitude to the organizers and to the many people who have helped sustain and support us. Before I dive into the talk and ask Christopher to pull up the power point I’d like to acknowledge that

I’m Zooming in tonight from Addison County, which is to say  that I live and work on the occupied ancestral land of  Abenaki People.  I want to convey my appreciation as a guest on this land and my respect to Abenaki ancestors past, present, and emerging.

Accessibility and sustainability

My hope is to foster accessibility and sustainability  during our time together.  So I want to be explicit in inviting  you to move around, stretch, knit, eat, turn off your webcam, step out of the room. Do what you need to take care of yourself. Is that all right with everybody?

There is an access copy of this presentation available in digital format.  I’m going to post a link to that in the chat box. I’m going to read aloud the URL. It is https://tinyurl.com/yd9mlag9.

If you have any trouble accessing the PowerPoint slides or the access script, you’re welcome to email me and I’ll send you a copy. The digital version might be  useful for anyone who benefits from accessing information at a different pace and place, realizing that environmental barriers, among many factors, impact our ways of learning.

Let’s start tonight with imagination and our own stories. I’m going to invite you to take a moment to create your own inventory.

Activity: Personal Inventories

What’s on the screen is a question for you: What are the first words and/or images you think of when you think of disability? I want you to make a list of what comes to mind. You can write it down on paper, or on digital devices.  You might say them out loud, while keeping your computer muted, and/or make mental notes.  I’m going to mute my computer for the next one minute while I invite you to make your inventory. Let’s go ahead and start working on it. [Pause].

It’s okay if the list is still growing. All of it is in-process. If you are willing to, I would like you to put into the chat box some of those words and/or images. But do not hit “send” yet. Let’s fill the chat box with our inventories and then, on the count of three, I want to invite everybody who’s willing to hit “send.” One, two, three. Go. So what’s happening right now is a fantastic cascade of contributions. I’m going to read some of them out loud. “Access, courage, challenges, isolation. Over-oppression. Everywhere, powerful, disruptive, wheelchair access, struggle.” If you think of others that you want to add to the chat box along the talk, you are welcome to do so. I also encourage you to hold on to your inventory. We’re going to come back to it. [Pause]

When I think about inventories like these, several lessons comes to mind. The first takeaway is that disability is all around us.   It’s everywhere. In fact, people  have been telling stories about wide-ranging bodyminds since the  beginning of storytelling.  And, as you start looking for  disability, it becomes apparent in even more places and  relationships.

The next lesson is that disability is a story. Actually, it’s many stories, With long roots in the past. That change meaning, depending on the context. Who’s telling the story, who’s learning the story, when/where/and for what purpose matters a great deal. Disability is often cast as a  fixed category. Medical categories or legal categories often exemplify this. But there are not actually full or fully accurate accounts.

More accurately is that we learn disability.

I want to say that again. We learn disability. It is taught to us. That means disability is not universal to all places, peoples, and eras. It means that there are many centers, many perspectives, many  experiences, many meanings. Historically, however, the dominant, preserved, remembered  stories that have been typically been told come from people who are not themselves disabled. And the stories typically  told imagine disability in very narrow terms, often as metaphor, cautionary tale, a “problem to be  solved.” I’m going to give you some examples, and invite others to add to the chat box if they have some in mind as well.

When I think about dominant representations of disability, I look to popular media. I think about how many times disability has been affiliated with vilians [think Captain Hook.] Or disability as the tragic victim, like Maggie Fitzgerald in the film Million Dollar Baby. Or as the problem to be solved, like every Muscular Dystrophy telethon, or news reports on conjoined twins.

What I would like us to explore are ways of seeking and telling Disability histories. On the screen right now is a large white circle with the words “disability histories” inside it. What I mean by that, stories that primarily center on disabled people as full beings and as agents of our lives, and that understand disability as a source of knowledge.  I’m an historian, so I’ll be  sharing especially stories from the past, or more specifically, disability histories. By “disability histories” I also mean our practices—how we identify, preserve, interpret, and disseminate our understandings of disability and disabled people in the past.

So let’s have some stories. I would like to start with a story about Junius Wilson. I first want to acknowledge Hannah Joyner, my coauthor of multiple works about Mr. Wilson’s life.

Mr. Junius Wilson

On the screen right now is a close-up black and white photo from 1994, Mr. Junius Wilson, an 86 year-old medium  dark-skinned Black deaf man wearing a tie, business jacket, and baseball cap that covers most of his short white hair, sits in a wheelchair on a porch,  looking upward at the  photographer. He’s holding another baseball cap in his hand, and he’s not quite smiling.

Born in 1908 in Castle Hayne, North Carolina, Junius Wilson grew up during the American racial caste system of Jim Crow, and attended a racially segregated residential deaf school in the 1920s in Raleigh.  Physical isolation both from white deaf schools and other black deaf schools meant that Raleigh’s students created signed communication truly accessible only to their immediate community.

Along with his peers at this deaf institution, Wilson embraced Black cultural deafness, including aspects of that culture that often made nondeaf people across the color line (but particularly white people) uneasy: gaining attention by touching each other, waving arms widely, and hollering to hard of hearing friends so they would turn heads and eyes to catch ensuing signs. Students at the North Carolina school spent most of their time together signing with one another, sharing gossip, informally educating one another.  Even with limited formal educational opportunities, the pupils galvanized a common identity and a sense of belonging.

No student before the 1930s graduated from the Raleigh school. Wilson himself was expelled in 1924 at age 17; he was arrested shortly thereafter under cloudy circumstances that included an alleged assault on a female in Castle Hayne. Communication barriers, eugenic ideology, and racist legal practices, among other hostile factors, contributed to the white jailer’s and the all-white jury’s assumptions that Wilson must be defective, that his inability or unwillingness to respond in ways they thought he should reflected mental disorder. In other words, they assumed he must be insane because he did not conform to Jim Crow expectations. The jury decided to commit Wilson to a psychiatric facility (criminal ward), where he remained for more than seven decades. At one point staff concluded that Wilson was sane but kept him institutionalized anyhow. During his detention Wilson labored, mostly uncompensated, on the asylum farm, running errands for staff, and selling worms and candy to people who passed through the campus. In the 1990s Wilson’s social worker and a team of advocates brought legal charges against the state to transfer Wilson to a cottage on the hospital grounds and to provide daily care.

That’s a lot of tender and difficult information to absorb about a person’s life. I’m going to give us a minute to hold space for that. [Pause]

There is so much to think about in Mr. Wilson’s story. Here are a few themes and issues among them: That applying different interpretations/judgements can create different understandings and outcomes: To the white authorities in the 1920s, Junius Wilson was read as inherently defective, a threat, and the solution to the “problem” Wilson embodied was to detain him. The mostly white staff in the 1970s and 1980s viewed Wilson as childlike, unable to live independently because he was deaf  (I also must note that none of the staff knew his sign language. Across decades Wilson lived in linguistic isolation, trying to teach staff how to communicate with him.) Even when opportunities arose to release Wilson from the locked wards staff decided against a discharge, claiming benevolent humanitarianism on his behalf.

In the 1990s, advocates re-evaluated Wilson with deaf culture and Black history as lenses. From their vantage point, Wilson had been misunderstood and discriminated against (based on eugenic, racist, and ableist assumptions). These observers viewed Wilson as a culturally deaf Black man, a person whose relations to blood and chosen kin had been severed by institutionalization, and who was especially harmed by linguistic and cultural isolation. They sought his release from the locked wards and language and cultural access for Mr. Wilson by introducing him to local Black deaf community members.

If we stretch and think even more broadly about Mr. Wilson’s story in US history, we might note that Jim Crow racism takes particular forms when combined deaf and disability. As one multi-pronged example: the trajectory of language  acquisition and language itself;  his incarceration at the psychiatric hospital involved compounded isolation—linguistic  isolation.  No one communicated with him in his language. Many white staff assumed he did  not have language knowledge.  In these ways, racism and ableism (ableism is system of power that hierarchically groups people and societies aligned with culturally-specific ideas of productivity, efficiency, capacity, material ambition, and progress.

History—as a formal field of study and an everyday practice of learning about the past—has reflected and reinforced particular ideas  about language that often further suppress and erase deaf and disability stories.  The field and our everyday lives are saturated with ableism and racism. For example, Hannah and I had  to resist our academic training as historians to prioritize written and oral English sources above other communication forms. (Prioritizing written and oral information would privilege institutional authorities over Mr. Wilson, for example). Wilson’s story also pointed us to engage with, understand, and value Raleigh signs, which differed from the signed language I knew and daily used (American Sign Language—a language historically associated with white people).

This also meant we had to look for different experts—Mr. Wilson himself and the people who attended his deaf school, as well as other Black deaf people who came to know and socialize with Wilson in the later years of his life (rather than relying only or primarily on people who claimed authority over Mr. Wilson, such as doctors, judges, police officers, or hospital staff).

Which brings us back to the point of disability as a source of knowledge.

Disability As A Source Of Knowledge

The next slide shows a white screen with a box, and inside it, it says “Disability as a source of knowledge.”

We’re meeting during a pandemic that has been ravaging our nation and the world. It seems particularly timely to look to disability histories, to lived experiences with earlier epidemics.  One of those stories is of polios in the United States.

A brief background: How many people know that first documented major polio epidemic in the United States  occurred in Vermont in 1894? (132 people in Rutland County). Polio outbreaks tended to spike in warmer months; its causes were unknown for a long time. Highly infectious, polio struck tens of thousands of people (some estimates place annual infection rates during the early 20th century at 15,000). Children were especially vulnerable to the virus.

Contracting polio usually wasn’t fatal; most people survived infection. The impact of polio ranged widely, and included various forms of paralysis. Thus the reach of polio extended across the nation (and beyond), infiltrating everyday lives. Anxiety. Fear. Uncertainty. Infected people were isolated in hospitals; quarantines marked the edges of this lived history. And this usually was an experience shaped by racial segregation and discrimination. Warm Springs—the rehabilitation center that Franklin Roosevelt founded and frequented—only admitted white people; Tuskegee’s polio center, which admitted African Americans, opened in 1941.

The Salk vaccination, introduced in 1955, changed the trajectory of this story, even as eradication efforts at the global level were—and are—uneven. Often, the stories of polio ends with the vaccine and the elimination of polio in most countries. I think about the phrase, “The problem to be solved was solved.” But the lived impact of polio can be felt to the present day: a story that recognizes disability as a social experience and accessibility as a justice issue, not merely a medical problem to be solved.

What has now appeared on the screen is a black and white photo of a 1959. It shows a dozen white-presenting women and men socializing  outdoors near a lake on a sunny and warm day. About half of the intergenerational picnickers sit in wheelchairs; some participants have portable respirators or neck braces. Most seem deep in conversation with one another.

In contrast to dominant representations of disabled people as primarily tragic, helpless, victims, as less-than-human, communities emerging within hospitals and rehabilitation centers, among other locations, polio communities forged important connections that sustained many individuals across their lifetimes. This contributed directly to emerging disability rights  movements, cultures, and politically conscious communities.

Stories of disabled people’s innovative designs and collective responses to inaccessible buildings and products illustrate disabled people’s agency and brilliance in everyday life. Living in inaccessible houses, in inaccessible neighborhood with inaccessible transportation, workplaces, and public life, polios responded to everyday barriers with innovative practices, do-it-yourself adaptations, newsletters to exchange ideas, tips for repairing broken assistive technologies, and inventions that fostered and sustained access. That insisted on their presence in the world.

From self-care practices and hacks for everyday circumstances to social networks that crowdsourced barrier solutions, disabled people generated insights and critical interpretations anchored to lived experience: Disability as a source of knowledge.

They were the ones who taught researchers and physicians what has since been named post-polio syndrome; they have remained the experts on strategies for navigating the world with these bodymind effects.

The presence of disability and the lived wisdom shared by disabled people also have generated design options that benefit many people across the spectrum of bodymindedness: Curb cuts, Good Grips kitchen-wares, lever-styled doorknobs (as just a few examples).

In the second half of the 20th century many polio survivors (along with disabled veterans, mad, and chronically ill people) became disability rights activists, establishing and leading organizations that have sparked changes ranging from the Architectural Barriers Act, and Universal Design practices, to Independent Living Centers, and the field of disability studies. I should note that Vermont’s Independent Living Center is directly tied to this cross-disability movement; our Center for Independent Living opened in 1979. [Pause].

I want to hold space to think about what else we might learn, be, and become with one  another in the current pandemic  and in other contexts if we valued, really listened to our disabled elders and ancestors about their experiences.

A related story underscores the point that the story of disability is one of coalitions and collaborations.

Coalition and Collaboration: The Section 504 Sit-In

On the screen is a scene from April 1977. It’s the Section 504 sit-in. This photo shows three disability rights activists (Hale Zukas, Ron Washington, and Judy Heumann) seated, facing journalists during a press briefing. An ASL interpreter (captured in mid-sign) stands nearby.

In the 1970s, activists successfully pressed for Section 504 of the Rehabilitation Act of 1973–federal legislation that would make it illegal for any facility or program that received federal funding to discriminate against disabled people. I’ll linger on this point for a moment: This was a major achievement, applying to schools, colleges, local governments, recreational facilities, public transportation, hospitals, and social services.  For four years the law was stymied because the Head of Health Education and Welfare (HEW) had refused to sign the regulations into effect.

In 1977, hundreds of activists staged a nearly a month-long takeover of a federal building (in San Francisco, although other federal building in other cities also were sites of protest). The campaign included people with wide-ranging disabilities as well as non-disabled people, ASL interpreters, members of the Black Panther Party (and the BPP helped feed and sustain the group, as did church members, labor unions, and neighbors)–a constellation of people across spectrums of genders, sexual orientations, racial and ethnic identities. It was the longest take-over of a federal building in US history. And the protestors were victorious.

They successfully compelled the federal government to implement 504 regulations. In addition to achieving its immediate political goal—implementation—the campaign imagined and created a new story: of meaningful coalitions and  “dreaming into action” greater disability civil rights and empowered disability communities.

Which brings us back to the power of imaginations…

Power of Imaginations

A common question disability community members and scholars ask is: ‘Who’s not here and why?’—in our sources, our local historical societies, museums, folklife centers, university special collections… our classrooms, organizations, neighborhoods, and our professions. Our many different efforts to answer that question expands who’s remembered in the pasts we study, who’s conducting research, and who’s accessing the knowledge we generate. It’s essential work. Because how we understand, search for, preserve, and tell disability stories shapes what is/can be in our future. This calls for greater imagination, for the active inclusion of disabled people, and for our full participation in the project of history and storytelling. It includes all of us—in the widest sense of ‘all” and of “us”.

I’ve showered you with lot of information over the last half an hour. So let’s take one minute, again, in quiet, to jot down some ideas, review your initial personal inventory, start a new inventory, take a breath or take a stretch before we shift to questions and reflections. Thank you. I’m going to put my computer on mute for one minute again to let us kind of sift and sit and then I’ll turn it over to Sarah, who’s going to be our facilitator for Q&A and reflections. [Extended pause.] Are there questions or stories that you have, or points that you would like me to come back to and expand on? Or questions for one another?

Questions, reflections, conversation

SUSAN BURCH: I’m noting one of the questions in the chat box asked what got me into historical aspects of folks with disabilities. Right — [chuckling] — lots of origin stories for that—at least for me. One is that I grew up among storytellers, and I come from communities with lots of folks with disabilities. I didn’t anticipate that these threads would braid together in my professional world. I feel very fortunate for that. But I also credit teachers who took a chance on me and nurtured my interest in history and my interest in deaf cultural communities in the United States and Russia; I also credit disability communities that welcomed me home before I knew it was home—this opened up worlds for me.

I’m also just fascinated by stories. I think they hold so many answers and possibilities for us. And they continue to broaden my world. I’ve been fortunate to have various projects land in the path in front of me, and then I’ve bumped into them, spent lots of time with them, met more people and learned more stories from them. This continues to generate the work of my world. I’m wondering: do we have other folks who identify as historians and/or disability scholars? And if so, how did you get here?

SARAH ROOKER: We have another question. What is your take on inclusion in Vermont with folks who have disabilities or are deaf?

SUSAN BURCH: That is a large question. I’m going to look out to the crowd of folks who have a lot of lived wisdom to answer this as well. [Pause] I’ll start by saying that I’m heartbroken that Vermont closed its deaf residential school. It’s a pattern that’s too familiar in the United States, and it typically has devastating results for deaf people. Across the nation. Eliminating this educational and cultural option foments exclusion for many deaf people rather than inclusion (by forcing deaf people to conform further to ableist and audist norms and away from deaf worlds).

Approaching this question from a different direction: we’re a small rural state. And that strongly shapes how we are, and who we are with one another. I’m gratified by the community interaction between some disabled people and nondisabled people—at the local level—where people know one another through kinship and other interpersonal connections. In these instances, the small scale context can foster connections that recognize disabled people as full beings, folks who belong in the community. But the isolation that many of us with disabilities experience in this state is compounded because of our rural character (and lack of robust public transportation, internet, and other resources, and because of ableist ideas about who deserves access and what access should look like).

So my sense, as just one disabled Vermonter, is that disability stories in this state are really varied. As a disability studies scholar and activist I would say that we have a long way to go before Vermont is a robustly inclusive state where disabled people experience full belonging and participation in all the ways and places that our most privileged nondisabled peers do. It reminds me how important the kinds of interpersonal relationships we have, but also the privileges some of us carry into the worlds that we inhabit (and those that are denied to others of us). Because that’s so strongly shaping what we get to do in the world and how we get to do it.

SARAH ROOKER: Now the questions are coming in. Has COVID had an effect on the awareness of disability and access issues in the settings where you’re teaching?

SUSAN BURCH: People in the many different worlds that I inhabit—not just where I teach—have been paying attention to access issues for generations. And one of the things that I hear from others is that the stories we’ve been told for so very long—stories about what’s not possible, what’s not permissible, what people can’t be allowed to do—suddenly became possible when nondisabled people wanted access to the things that they’re accustomed to. When people with a variety of privileges, including ableist privileges, have felt the pinch of inaccessibility. In this way the pandemic makes very clear the failures of our imagination and the damage of ableism. It demands that we reconsider what’s possible and how. These shifts in some measure give me heart that perhaps we can expand access measures.

At the same time, systems power and privilege that target disabled people and especially disabled BIPOC as well as LGBTQ folks (and those who come from multiply marginalized communities) cause immense harm and vulnerabilities. The material consequences are vast and devasting, amplified by the pandemic and only partly acknowledged by broader America. When we think about access to health care, to transportation, to communication, and to community…these matters of access are life and death matters. They always have been vital matters. And disabled, chronically ill, and mad people have always borne the brunt of ableism. I’m noting that my colleague Tara Affolter has a hand raised. Can I pass the baton to Tara?

TARA AFFOLTER:  Hi.  In relationship to the COVID question, one of the things I think that I’ve been — [sighs] — most disturbed about is the way that disabled and chronically ill folks have been discussed in the media etc.– since the COVID outbreak. “So who is disposable?” Only the most vulnerable are at risk. And why does that become …  a thing,  that is, a way that we talk about people being disposable? I think that’s one of the things that the pandemic has done; it has heightened it so much that folks who maybe couldn’t read ableism before recognize it. Because it’s so glaring, the ways that we’ve decided that some people just don’t count. That’s super disturbing and heart breaking. But I also think that this has allowed those of us who have been working in disability rights to point out issues that other people would’ve ignored at other times. Thank you, Susan, and thank you, everybody.

SARAH ROOKER: This is Sarah. I see a question that follows up from there, from Keren: What are some resources where we can learn more about disability justice?

SUSAN BURCH: Hello, Keren. There are some fantastic groups out there. I would point to Sins Invalid. I would point to the Harriet Tubman Collective. And also HEARD. These groups have generated vital resources on the web and elsewhere about disability justice. When I say “disability justice,” I mean inherently cross-issue, collaborative, antiracist, decolonizing, efforts aimed at the full liberation for all people, and with the ethic that “no one is left behind.” I would also encourage everyone to read everything that fellow Vermonter, Eli Clare, has written.

SARAH ROOKER:  Thank you. Let’s see. Barbara asks, “can you speak to distinguishing between honoring folks with disability without centering their stories as one of overcoming?”

SUSAN BURCH: Right: that’s often a complicated choreography. Because ableism is everywhere. And peoples’ reception is not the same thing as people’s creation of a story. This reminds me of a  report for the Ford Foundation by Judy Heumann. Among her conclusions for how we change the story of disability across the nation and world is to start by including disabled people in every part of a project. Hire disabled, mad, and chronically ill people—folks from across the entire range of bodymindedness. Also, don’t default to engaging only with the more comparatively privileged disabled people to tell the stories for everybody else. And ask disability communities: what are the stories that YOU want shared? How can we share our resources to support that? As you become more aware and gain knowledge of disabled people’s actual lives and disability as a source of knowledge, then when you are confronted with inspirational stories or responses that reduce us to a stereotype you will recognize it  as such. And we need you then to disrupt those narrow stories, to point people towards other sources and other ways of thinking about our beautiful and complicated and luscious lives as disabled people.

SARAH ROOKER:  Interrupting stereotypes is an ongoing process to do, to gain the courage to do it. Kyle follows up with a question: for those of us working in mainstream media, how can we elevate the many authentic and rich histories surrounding the disability community? Do you have thoughts on the film “Sound of Metal” and its representation of deafness?

SUSAN BURCH: Well, as backdrop to this: You have more than a 50% likelihood of winning an Oscar if you’re a nondisabled actor performing disability. If you look at the last 50 years of the Academy Awards, it’s a consistent bet to make. So coming back to the wisdom that disabled actors, directors, and screen writers have been pointing out: we know our stories. We live them and create them. And we generate imagined stories, informed by the brilliance of our everyday lives as disabled people. Ask us to participate in every part of the creative process. Hire us.  This means not only involving disabled actors, but disabled writers,  disabled audiences for screen testing, disabled techies, and others as you go through the production process. Disabled people should be part of the entire creative process. It would make a difference also if the media projects created actively imagined disabled people as valuable audience members too.

Kyle, I admit that I have not yet seen “Sound of Metal,” so I can’t speak to the acting or any other substantive part of the film. I have seen some of the trailers and film reviews (by people not affiliated with deaf or disability communities). I have to say that the marketing and the summary descriptions of the film are disappointingly familiar. They closely resemble the particular ways Hollywood-ish films have long depicted deaf people as deficient—lacking hearing or a world of meaningful sounds. So it’s common to see stories with musician characters, white males especially, who lose their hearing and then the experience of hearing loss becomes the dramatic pivot. Deafness then becomes the metaphor of overcoming, seeking, finding oneself. I also just have to say that I find it disingenuous when non-signing reviewers and marketers assert that an actor who spends merely months with deaf cultural communities has become “fluent in American Sign Language” or deaf culture. It’s a flag that culturally deaf people have not been deeply involved across the whole production of a film and that the work is geared without deaf people ultimately in mind. To be clear though: I think it’s great to spend time with ASL users and to engage with deaf cultural community members and I encourage others to spend time with us/them.

SARAH ROOKER:  Laura Siegel says she loves how the movie demonstrated how she feels when she’s in a crowd.

SUSAN BURCH: That’s wonderful, important. I appreciate your letting us know that about the film.

SARAH ROOKER:  We have some more questions around the media. What are your thoughts about “Deaf U” on Netflix?

SUSAN BURCH: I would be curious first to know how other folks who’ve watched that series respond to it. [Pause] I spent 12 years teaching at Gallaudet University. And I have great affection for the Gallaudet community. I’m grateful for its imprint on my world. Because of that imprint, I selfishly loved seeing the campus—when they showed the campus (which wasn’t very often). [Sigh] Part of what was disappointing to me about “Deaf U” is that it’s marketed as being unique because it had deaf people in it, that being deaf made a difference. But what I saw in the representations of those people was more about the pervasiveness of racism, white privilege, misogyny, and greed. And I was struck by the absence of the vital cross-generational connections that have sustained America’s deaf cultural community for 200 years. Such a missed opportunity. I ached that we viewers had very little sense that Gallaudet is a university community. (Although I appreciate that for “reality TV” that fact is perhaps less attractive.) That said, I must admit that I need to spend more time with the series, as much as I may not want to spend more time with it, because I think it’s an important moment to think about who the deaf cultural community wants to be. And the reckoning that the community has been experiencing, particularly with the rise of cochlear implant technology and the decreasing number of people who identify as culturally deaf in ways that would have been easily recognizable a century ago. So critically examining “Deaf U” matters because of who’s getting to tell the stories to a national audience (and who isn’t) and of what it means to be deaf in America now. That kind of exploration helps us understand that the meanings of deaf identity are actually more complicated, and more interesting, than what “Deaf U” offered us—and why that’s so. But I would love to be shown other sides of this that I missed because I’m a cranky former Gallaudet professor. Did other people have different experiences or other things that they noticed about that that show?

SARAH ROOKER:  Does anyone want to share their thoughts?

LAURA SIEGEL:  Okay. So I’m deaf, myself. And I never went to Gallaudet. But the thing is, I kind of noticed that “Deaf U” showed a better demonstration of the spectrum. Like me, you know, people are always making the wrong misconception when they meet me. They assume I’m mute, I’m dumb, I don’t have the ability to go to college, I don’t have the ability to hold a job. But at the same time, over the years, I always have felt oppression. I wish that that movie showed that we are fighting to get into hearing society, being accepted, and included. And it feels like –not intentionally—but I feel like we’re segregated. I don’t know if you agree with that.

SUSAN BURCH: I think it’s a powerful insight, thank you. The push and the pull to fit into a society that values being hearing over being deaf is a long and complicated history, cascading into present day—as you note. Language is a big part of that. So for the linguists in the group: one of the things that’s striking to me as a scholar who researches actively using sign language is what happens when production crews are comprised mostly of nonsigning people. (I want to make a distinction between nonsigning people and deaf and nondeaf people. I’m a nondeaf person who’s been signing the vast majority of my life.) When I’m being videorecorded and the person on the other side of the camera is not a signer, but I’m supposed to sign my side of an interview, I often don’t sign in full ASL. My signing drifts towards English grammar and syntax, not ASL, for example. I’ve noticed that many other signers—deaf and nondeaf—also do this. That matters, in part, because one of the possibilities that’s so beautiful about modern media is the capacity to capture how people communicate. But what often gets videorecorded is distorted by audism and ableism. “Deaf U” is an example of that: They had a group of deaf college students, some of whom are masterful signers when they’re not directly in front of the camera.  But in the individual interview scenes almost everyone is signing in English word order–not really signing in ASL—or in the ways deaf people commonly communicate with other insiders of deaf cultural worlds. So the shadow of ableism and audism distorts a key feature of the show: use of American Sign Language. Now the reality, as you noted Laura, is that deaf folks communicate in so many different ways. But among them is vibrant, gorgeous ASL. Laura, you wanted to add something?

LAURA SIEGEL:  I wanted to point out one more thing. I remember when I started watching “Deaf U,” there was one woman who she felt discriminated because she wasn’t “Deaf enough” to fit in their world. “Am I Deaf enough to belong to your crowd? Where do I belong then?”… I’m not hearing and I’m not hard-of-hearing. I’m deaf. I grew up oral; I learned sign language 20 years ago, but that doesn’t mean you just disregard me from society based on that. That makes me more isolated. Now with the pandemic, it’s even worse. Imagine my emotional state of how it feels with isolation, being deaf in a rural area. I do want to encourage you to keep truckin’ on.

SUSAN BURCH: At core, we’re people with many layered identities. With many different experiences at any given time. And lateral oppressions within deaf communities and broader disability communities are as present as they are in all other targeted communities. We have work to do, to take down those barriers, because we know that access and coalition are fundamental towards justice. Access is not the goal of justice work, but it’s necessary to get there. And that also includes how we are with one another.

SARAH ROOKER:  Do we have any other questions or comments? Anyone would like to share? Looking like perhaps not. I guess I wanted to say thank you so much for coming tonight, and thank you, all of you, for sharing your thoughts, and my gosh, the chat is full of links. Links to resources and other materials. And so that’s a wonderful contribution from everyone. Susan, thank you so much. And I think if anyone has a final question, and would like to stay for a moment, we would be happy to answer any. Thank you.

CHRISTOPHER KAUFMAN ILSTRUP:  Sarah, we’ll save the links in the chat, and we will post them on the Vermont Humanities web page and probably on the Facebook and Twitter when we post the transcript of tonight’s talk, so you will have access to them there.

SUSAN BURCH: Thank you, everybody.

SARAH ROOKER:  Thank you, have a lovely evening. Thanks, everybody. Thank you, Susan. And everyone. That was great.

SUSAN BURCH: Thank you also to our captioner, who did a beautiful job. We appreciate the access provided.

CAPTIONER:  You’re welcome :)

SARAH ROOKER:  Thank you so much, everybody, for coming, and please do check out the website, and join us at other events later this week. The film premiere of Quality of Mercy is coming up on Friday.

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