Disability in America: Living and Writing 30 Years After the Americans with Disabilities Act
In this week’s episode of Fiction/Non/Fiction, co-hosts Whitney Terrell and V.V. Ganeshananthan mark the 30th anniversary of the Americans with Disabilities Act by talking to two writers who have made important contributions to the way we talk about disability in America. First, poet and essayist Molly McCully Brown discusses her new essay collection Places I’ve Taken My Body, and reflects on the threat a global pandemic poses to populations who are already seen by society as less valuable. Then Rebekah Taussig talks about her memoir Sitting Pretty, as well as pervasive and tired ableist tropes in films and literature.
To hear the full episode, subscribe to the Fiction/Non/Fiction podcast through iTunes, Google Play, Stitcher, Spotify, or your favorite podcast app (include the forward slashes when searching). You can also listen by streaming from the player below. And check out video excerpts from our interviews at Lit Hub’s Virtual Book Channel and Fiction/Non/Fiction’s YouTube Channel. This episode was produced by Mary Henn, Emily Standlee, and Andrea Tudhope.
Part One With Molly McCully Brown
V.V. Ganeshananthan: In addition to your own experiences, Places I’ve Taken My Body also considers the American eugenics movement, which is the crux of your poetry collection, The Virginia State Colony for Epileptics and Feebleminded, especially the erasure poems in the latter half of the collection. Could you talk a little bit about your commitment to that subject in your writing?
Molly McCully Brown: The Virginia State Colony For Epileptics and Feebleminded was a real place that, from the early to mid 1900s, was a government-run residential hospital that was one of the major hubs of the American eugenics movement in the country. Thousands and thousands of people who either had or were perceived to have a variety of physical and intellectual disabilities were forcibly committed and forcibly sterilized there, not only without their consent, but often without their knowledge. They were told that they were being given appendectomies and then were sterilized instead. I grew up just a few miles from the grounds of the former colony, which is atypical in terms of these eugenicist institutions because until only about six months ago, it remained an operational residential facility for adults and children with serious disabilities.
It’s a strange place because like a lot of things in the rural South, it was built on an enormous amount of land. When the original buildings from the colony fell into disrepair, instead of either moving out of them and knocking them down and building new buildings, or rehabbing them so they were up to code, they just built new buildings next door. So the institution is this really strange combination of a ghost town of this eugenicist facility and a functioning hospital. Growing up as a person with cerebral palsy, which is a pretty significant and visible physical disability, in the sort of immediate vicinity of this place, I got interested in it as a young person in college, and interested too in the reality that if I had been born in the same part of the world, the part of the world that is my home and means a lot to me, even 50 or 60 years earlier, I might have been a prime candidate to be a colony patient. As a part of my interest in that proximity and distance, I’m also interested in the ways literature can be used in service of social justice. As a historical and emotional record, I got really interested in writing about the place. So, my first book is set entirely in the colony in the mid-1930s, at the height of the sterilization movement.
Whitney Terrell: In the midst of this global crisis, the elderly population as well as those with disabilities and minority groups have been largely disregarded. How do you connect with that current mindset and treatment with things that have happened historically, like at this facility you’ve written about?
MMB: One of the things that was so interesting to me, in doing research about the eugenics movement in America, is that populations that were in any way marginalized suffered and were sterilized and penalized at much greater rates than other parts of the population. So that means if you were impoverished, if you were undereducated, if you were a person of color, if you had a very visible disability or a very extreme disability, you were much more likely to be sterilized at one of these facilities. And I think we’re seeing in this pandemic that that is continuing to hold true. Populations that already were marginalized, lacked resources, were suffering in other ways in our country are suffering to a greater degree during this pandemic.
The other thing that became really clear to me as I was working on the first book and then while writing my essay collection, there were two primary forces that made the eugenics movement take off in the states in the way that it did. One of them was this notion that the people who were being sterilized were somehow not complete and whole people, that it was better to shut them away and siphon them off from the community, that they weren’t in possession of whole and complete inner lives, they weren’t adding value to the world. As much as eugenicist doctors would sometimes talk and pay lip service to the idea that this was done for their benefits, the idea was really that it was done for society’s benefit. I hear troubling echoes of that in the way that some people have talked about populations that are especially vulnerable in this pandemic. The idea that the people who are dying from it are the people with pre-existing conditions, or people who are older or less valuable somehow.
WT: The Lieutenant Governor of Texas—Dan Patrick—was like, well, you just gotta let the old people die.
VVG: It was a bunch of people. It was wild.
MMB: It was a really troubling number of people. I think it was [Dan Patrick] who said, I think most grandparents would want to sacrifice themselves. This idea that not only is it an acceptable loss, but in fact, people who are vulnerable or who need in this way are somehow burdensome and should be willing to sacrifice their own existences as a way of getting out of the way.
VVG: There were some journalists who went and did interviews with disabled and elderly persons who said, how did it become acceptable for people to talk like this? And they were talking like that on network television. I live in Minneapolis, and hospitals are getting full, and so people are starting to have conversations about how they’re going to choose who’s going to get treatment. I know those conversations are happening in other parts of the country as well. And so I feel like that talk, which was part of the beginning of the pandemic, is resurfacing.
MMB: It absolutely is. And I think it’s really important to be explicit about the fact that the rhetoric of what constitutes a valuable life, and if we have to make decisions about limited resources and limited care, that has real lived mortal consequences, especially for people with disabilities. We’ve already seen a report or two—I can’t remember the specifics, but there was a man who was a quadriplegic who ended up with COVID and needed a ventilator, and the hospital essentially said, we don’t think this is a good use of our resources. That’s a really present and troubling thing happening right now in this country.
* Part Two With Rebekah Taussig
V.V. Ganeshananthan: In your book’s preface you write that social media has the power to destroy but simultaneously offers, and I’m quoting here, “at least one tremendous gift: the power to share a story without going through the gatekeepers who’ve historically said, ‘Pass! We don’t tell those kinds of stories. Who would listen?’” Can you talk a little bit about those gatekeepers and how social media has disrupted them and their patterns?
Rebekah Taussig: When we think about the publishing world—and not just literature, but even studios and producers, and all of the people in charge of what stories are being distributed on a wide scale—and the people making those decisions, by and large those people are disproportionately not disabled people. There was a survey that went out in the publishing world [in 2015] to assess diversity of the people staffed there, and that study found 92 percent of the people in publishing were non-disabled people. But in the US, it’s largely estimated to be around one in five people having some kind of disability. So those numbers don’t match at all. Think about the impact of that, in terms of what stories are getting more attention or sought out, and which ones aren’t seen as needed. I think of books like Me Before You, which turned out to be a really big film in 2016, that is overwhelmed with horrible tropes of disability. And I think about whose desk that arrived on, who looked at that and didn’t see the ten giant red flags on that manuscript. And I think that is easy to happen when you have kind of this tilt or lean towards one perspective over the other, and you don’t have other voices in there to catch that.
One of the beautiful things that I’ve seen happen online is disabled people being able to see each other and recognize that they’re not alone. When you grow up with a disability, or you have become disabled, a lot of times it’s easy to think that you are really the only person in that boat. And part of that is reinforced by the stories we have around us that don’t represent that experience. But suddenly, online, people were able to see each other and hear each other. Erin Clark was one of the first people I found online with a disability, and the things that she wrote about her experience in her body, it was like, I didn’t even know words like this could be written; I didn’t know that this was a story that anyone could tell or that anyone would care about. So I think seeing each other in that space was really important.
And then this other thing happened—industries started to recognize that there really is a vibrant disabled community that translates into an audience or a consumer. So we have publishing industries, film industries, but also fashion industries and advertising agencies recognizing there’s a whole population here that maybe wouldn’t have been seen as a demographic worth keeping in mind as much in the past. I think the momentum of that community building online has been really transformative.
Whitney Terrell: That’s had an effect on your career. Bustle has a list of 10 body positive Instagrammers with disabilities—you’re on there. But speaking of the tropes in literature and film that you’re talking about. You think of The Hunchback of Notre Dame or Forrest Gump, or in the movie My Left Foot where Daniel Day-Lewis acts as someone with cerebral palsy, even though he doesn’t have it. There’s a debate going on with Sia right now about a movie that she’s making and whether or not these characters should be played by people who have the disability that’s being portrayed. How far do we have to go to get what you would consider to be equal representation for people with disabilities in media?
RT: I think there’s a lot of things happening simultaneously right now. On the one hand, we do still see these glaring tropes showing up all over the place. That’s not going away easily or anytime soon. Even films that I really love, like The Shape of Water that came out a couple of years ago, or even Get Out, which is a gorgeous, important film, have some of these disability tropes kind of tucked into them in a way that doesn’t always get a lot of attention afterwards. In Get Out, we have a blind villain who essentially will do anything within his power, even commit atrocious acts of violence, to reverse his disability or get his eyesight back. And that’s a really common trope.
The Pikachu movie that came out with Bill Nye as the villain—it was the same thing, you have the disabled super-villain who’s going to destroy the world in order to get his body back. This is not so unlike the trope that you see in The Shape of Water, where you have the protagonist who is mute, she doesn’t speak, and there’s this fantasy sequence where she acts out and sings and performs using her voice. That’s a really common trope—that showed up in Glee, The Theory of Everything—where you see the disabled character have this little flash of a moment where they get to fantasize what it’s like when their body is returned to its abled, “normal” state.
WT: That’s so interesting, because I feel like I don’t see those. When you’re going through them, I’m like, oh yeah. I do think the tropes you’re talking about are less thought about, to be perfectly honest, by ableist writers.
RT: Totally. I think what that shows us is ableism is really pervasive. It can show up anywhere. You can be a disabled person and still write an ableist trope. I don’t want to overlook the things that are happening to move us in a different direction. I look at the show Special. It was written by Ryan O’Connell as a memoir originally and then Ryan wrote this screenplay and actually performed in the show on a Netflix series called Special. It’s just his story of being a man with cerebral palsy and gay and coming to terms with his own identities, and exploring his sexuality as a disabled man. It’s a beautiful, brilliant, charming, funny show on Netflix that has gotten some good attention, and people are watching it and enjoying it. The fact that that exists is very exciting. It’s something new; it’s a move in a different direction. My idealism is going to say, I think we’re moving towards better, more complicated, interesting representation, away from some of these old stories. I hope that’s where we’re going.
Molly McCully Brown Places I’ve Taken my Body · The Virginia State Colony for Epileptics and Feebleminded · In The Field Between Us · On Books and Their Harbors
Rebekah Taussig Sitting Pretty: The View from My Ordinary Resilient Disabled Body · “I’ve Been Paralyzed Since I Was 3. Here’s Why Kindness Toward Disabled People Is More Complicated Than You Think,” Time · “I Called Mine Beautiful,” The Florida Review
Others If You Really Love Me Throw Me Off the Mountain, by Erin Clark · “10 Body Positive Instagrammers With Disabilities You Should Follow Immediately” by Nina Matti, Bustle · Special, Netflix series · “Sia’s Trailer for ‘Music’ Struck a Nerve with the Disabled Community. Her Tweets Only Made Things Worse.” by Allison Norlian, Forbes · The Golden Girls, TV series · “Texas Lt. Governor: Old People Should Volunteer to Die to Save the Economy” by Bess Levin, Vanity Fair
Transcribed by https://otter.ai. Condensed and edited by Andrea Tudhope.