When it comes to disability education and advocacy, Sonya Huber is a leading voice. The author of eight books, Huber’s creative nonfiction explores the American pursuit of health insurance, living with chronic pain, and disability activism, which she revolutionized in 2017 by creating the online Disability March, the companion to the in-person Women’s March in Washington, DC. Now, in her latest craft book, Voice First: A Writer’s Manifesto, Huber invites readers to push against the idea that writers have a single voice, a theme that emerged from her lived experience of disability and her work as a disability educator. This craft text offers personal accounts, craft discussion, and inventive exercises to explore how struggles with voice are influenced and shaped by gender, place of origin, privilege, race, ethnicity, and other factors, reframing and updating the conversation for the twenty-first century, and offering a much-needed perspective for disabled writers.
I had the privilege of working with Sonya to guest edit a 2020 “Experiences of Disability” issue of Brevity with fellow writer and activist, Keah Marie Brown, and I was delighted to collaborate again via Zoom and email to talk about writing disability, academic ableism, and finding and celebrating our voices.
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The Rumpus: Hi Sonya, thank you so much for chatting with me today! It feels fitting that on the day we are scheduled to talk about how disability impacts writing and education, I’m having a bad pain day. We often ignore the body when talking about pursuits of the mind, but as your new book, Voice First, argues, writing is an embodied practice. Can you tell us more about how pain has impacted your writing and the ways disability shapes voice?
Sonya Huber: Definitely, and I love this question. I developed rheumatoid arthritis in my thirties, which initially presented a huge challenge to my writing. At first, I thought that pain had taken away my voice, as fatigue and the pain experience blasted away my concentration, changing the shape of any sentences I wanted to put down on paper. I’d lived with other invisible disabilities, but because I’d always carried them, they seemed like home ground, and I didn’t know what it was like without them. And at the same time, I never identified as disabled. But the pain was a sudden and large new roadblock. In paying attention to what I was slowly able to write, I saw that there were openings, that I was being pushed in new directions, and I began to want to describe this new place where I lived. The pressure of pain forced me into a kind of directness; I never knew how much time or energy I had. And as I wrote, I was welcomed with the theorizing and lived experience of disability activists, who helped me understand my new reality. I lived one tiny version of the reality that different bodies, from different social and material conditions, power different voices and have access to different views on our shared reality. This, to me, supports what activists and disabled theorists of color—I’m thinking of Audre Lorde and bell hooks, two Black disabled women in particular whose work has been a touchstone for me—have been saying for a long time: that our bodily experience can generate knowledge and the paths to liberation.
Rumpus: Your book Pain Woman Takes Your Keys is a staple text for so many of us that live with chronic pain, but in Voice First you describe the struggle to write this book while also working as a professor, being a mother, and being disabled in an ableist world. What are some of the struggles disabled writers face that are silenced or erased from conversations surrounding writing, publishing, and education? Has the pandemic response, or lack thereof, impacted disabled teachers and students, and what can we do when it seems so many education systems have decided to move on from protecting vulnerable populations?
Huber: Disabled writers, first, face so many challenges in getting access to the conversations and mentoring that can begin in the classroom. And our educational system—our access to education—is so deeply messed up in this country, and the educational disparities are rooted in how we fund public schools. Schools with limited resources are essentially being starved by this system, meaning they cannot offer services or access to disabled students, or those students are in danger of being tagged as behavioral “problems” and shunted into the school-to-prison pipeline. It’s so big. And so often, at the college or K-12 level, everything about disabled students is reduced to accessibility issues, which are important, but they’re not the whole picture. In many ways, we have had an opportunity to re-examine ways to deliver education during the pandemic, and we’ve decided to take a pass on that opportunity. And all of these inequities feel as though they are worsening exponentially with the COVID-19 pandemic. Today a disabled writer in my writing classroom might wonder how they will be able to focus or complete a class if they have a complicated medical history and are afraid of getting COVID-19 on campus, or if they’ve already had COVID-19 and are dealing with long COVID and other health impacts. We’re living through a mass-disability event, and it doesn’t yet seem to be on the radar that that is what’s happening.
Just as education changes vastly depending on where you live and who your friend network is, the literary world is mapped by connections and friendships based on geography that is inaccessible to many. The stereotype for me might be a crowded nighttime bar in Brooklyn at a book launch: in a place and time where someone using a wheelchair or navigating chronic fatigue might never be able to go. Disabled writers don’t get on the radar because they’re not in those spaces. Disabled activists have brilliantly created their own geographies and networks with the internet and social media, but even the disability rights movement is riven with racial and class inequities. Above all, I think that right now we are at a spot where even able-bodied people who feel themselves to be on the “right side” of social justice don’t yet have the firm idea that disabled lived experience is a key to a more equitable future for everyone. Disabled writers have pushed for access and accessibility, but it still is so often seen as a nice thing or a favor that’s being done, rather than a gut-level imperative required by the fact that we all want and need and will be healthiest and happiest with a different way of being.
I could go on and on about this, but I’ll end by saying that there are tired literary tropes—disability porn, the “overcoming” narrative, disability as tragedy, eugenicist tropes even in best-selling work—that able-bodied writers as a whole just haven’t absorbed as really bad writing, as literary clichés that are also frameworks that put us all in danger, both the disabled and the temporarily abled.
Rumpus: Tell us more about Voice First. How did this book come about and what do you hope it will do for disability and education? How did your work with disabled students shape this craft text?
Huber: Voice First is, to me, an invitation to play dress-up or play with persona, to try on different voices as an act of self-discovery and world-discovery. It began with my own experience of writing in a voice I named “Pain Woman,” followed by the realization that I could learn to appreciate and understand my own expression by naming and exploring the range of other voices I already had within me. I then dove into the research around the idea of “voice” in writing, basically pushing toward the idea of voice as a multiplicity instead of something singular and isolated, which writers like Peter Elbow and Mikhail Bakhtin and others have already written about. I hope that in sharing the story of how pain led to these general insights about writing to explore disability as generative and knowledge-making.
A few years after I began writing some of my pain essays, I also began to investigate voice shifts with my composition students. Many of these students had been told they were “bad writers” and carried that label as a burden, and many of them had diagnosed and undiagnosed learning and other disabilities. Out of desperation one day in the classroom, I invited these students to “rant,” to tap into the joyful source of being annoyed or pissed off, and that rant voice, and the way it opened up a connection back into their own ownership of writing, what it did for me in that moment, led to so much going forward. I saw their bodies and faces open up. And also, in teaching classes about writing and pain or disability in the years since Pain Woman came out, I was able to absorb and learn from what disabled writers produced, what worked for them, and I think that collective experience, as I experienced it, led into Voice First.
Rumpus: You do a wonderful job in this book of acknowledging how “voice” might be considered ableist. Why was it important for you to acknowledge and clarify this, and how do we actively resist ableist metaphors in education, especially when disability is so often left out?
Huber: So many of the metaphors we use that come from the body and bodily experience are ableist and predicated upon a notion of “normal.” In educational systems, that idea of “normal” has led to serious accessibility issues, to separate and unequal classrooms. And there’s so much work to do because while accessibility is a small piece of disability rights, it is not the whole picture. Focusing on accessibility can actually also mask disability itself by seeing disability as a series of deficits that have to be “made up” or corrected for with extra resources, when in reality, our entire system might be improved by considering the full range of existence. And this question is so vital now, because as we move into a new phase of the COVID-19 pandemic—I’ll call it “the False End”—there’s a huge upsurge in eugenicist language that implies that we should let the virus run amok to “eliminate the weakest.” Clearly, that’s a direct viral transmission from Nazi Germany. If we use metaphors about society as a “body” to represent a certain template of “normal,” we are much, much more inclined to set disabled people aside as aberrant or weak. We are already living in that world.
Rumpus: When discussing the ways voice is shaped and impacted by our interactions with other people, you reference Matthew Salesses’s essential craft text, Craft in the Real World. Can you say more about how the intersections of power imbalances and judgment, racism and sexism, homophobia and ableism, impact writers and writing advice? How can educators resist and reshape these in the classroom and how does this approach differ from the traditional workshop method or other “universal” advice often presented to writers?
Huber: Matthew Salesses’s Craft in the Real World is so helpful because it moves the discussion of “craft” itself into a space that is rightly inflected by all the social forces that shape writers, from race and class to sexuality and gender identity, trying to move us beyond the idea that there’s such a thing as “writing” that exists in a vacuum, separate from our lived experience. As a young writer, I started with so many judgments of my own “voice,” even with all the voice privilege I had as a white cis woman whose parents valued education and who was identified early for encouragement of my writing. Anyone facing more social oppression will have encountered so much more voice pressure and judgment: the sense that your expression is wrong, rather than that it’s the source of everything you have to say! It’s no accident when social institutions alienate young writers from their own expression—that expression is seen as dangerous, as world-changing. I think texts like Salesses’s and also Felicia Rose Chavez’s The Anti-Racist Writing Workshop offer important classroom practices and reflections on larger social institutions and forces that can either squelch voice or save voice and give choral support. I have needed to listen to and explore my own voices in the company of others before getting immediate feedback from others on the product, so I’m really interested in Chavez’s model of restructuring the writing classroom to offer space to explore without the immediate introduction of critical feedback and with a more process-oriented approach. Both Salesses and Chavez ask us to understand, I think, that writing is actually much more expansive than we imagine, that it always includes not only the page but the writer and the writer’s life. That’s where writing comes from, and pretending otherwise is erasure.
Rumpus: As a neurodivergent writer, I’m particularly interested in unmasking and unlearning ableist writing advice that actively harms our work. You write about the freedom in finding and naming your voices, and the power of relaxing into your work rather than rigidly trying to control elements of craft in order to present them to a particular audience. Why is discovering voice essential for disabled writers and students, who have been told for so long that their voices are wrong, dramatic, attention-seeking, or weird? How can disabled writers embrace our rich voice(s) and empower ourselves to tell our stories despite lived experiences where expressing these truths can be dangerous?
Huber: This, for me, is the core of voice work: the excavation of trying to find one’s own voices beneath all of the shaming and judgment about how we express ourselves. Naming my voices has been a cue for me to see how each voice is connected to community, to collective, to place, to time and era. So in the naming, I am reminded, in a roundabout way, that I’m not alone. There are other people with pain voices, other people from small Midwestern towns, other ex-Mathletes, other people who were on public assistance, and so on. It’s not just me. Social and physical forces have shaped my voices, and the naming reminds me that a voice is okay because I wouldn’t discount another person from that same place. I think I have duct-taped a sense of authority this way. I struggled for decades with the idea of authority; like many young people, I had it when I was eight, and then it was kind of smashed out of me. So I didn’t believe that a reader would take me seriously. But when I imagine myself as one voice from a collective—and maybe when I imagine another being close to me but with more authority—the naming and the investigating of voices pointed me toward an increased sense of a right to speak.
Rumpus: In addition to your writing, you are a member of the community council for the National Pain Advocacy Center, as well as the creator of the 2017 online Disability March, the companion to the in-person Women’s March in Washington, DC. How do activism and writing work together for the disability community? How is sharing our stories a form of activism within schools and beyond?
Huber: One of the most important functions of sharing our stories is visibility and identification. Alice Wong’s Disability Visibility Project and the Sins Invalid performance collective are two shining lights in this area (and Alice also has a new memoir, Year of the Tiger: An Activist’s Life). Because disabled perspectives are often hidden or devalued or interpreted through messed-up ableist lenses, it’s hard for readers who might identify to find them. Each story that gets out there to readers is a chance for another reader or writer to get sparked to tell their own story by comparison or contrast. When we have access to each other’s stories, we make a home for each other, and we build a space where we can exist together, where we can brainstorm problems and solutions, where we can affirm each other and push each other further and identify what we need.
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Author photo by Francesca Andre
