Like many disabled people who grew up in the decades after Helen Keller’s death in 1968, I had always found the mythology of her life story troubling. The narrative that depicted Keller — arguably the most famous disabled person in 20th-century America — as a sort of deaf-blind angel did not resonate with me.
I’d later come to see Keller’s mainstream image and story as a textbook example of “inspiration porn,” where disabled people’s lives are flattened into saccharine narratives about overcoming adversity, usually designed to make nondisabled people feel uplifted and grateful. The enormous success of the 1962 film “The Miracle Worker,” which reduces Keller’s long life to the iconic water-pump scene in which 7-year-old Keller begins to communicate, had much to do with that mythology. As someone who’s always been attracted to the dark and edgy cultural underbelly, Helen Keller’s story struck me as too wholesome and precious.
So I was curious when I came upon a book titled “The Radical Lives of Helen Keller,” by the women’s studies scholar Kim E. Nielsen, 15 years ago. I was a graduate student at New York University, but I was faltering in my studies at the time, and, uncertain that I was cut out for academia, I had begun moonlighting as a performance artist. I was also slowly going blind and struggling to make my way in the world.
In “The Radical Lives of Helen Keller” I found a new sort of narrative, and it was a revelation. I learned about Keller’s expansive and often controversial work to promote human rights — for women, for workers, for people of color. I learned that in her long life (1880-1968) she was a socialist, a suffragist and a founding member of the American Civil Liberties Union. And of special interest to me as an artist, I learned that Keller and her teacher, Anne Sullivan, performed on the vaudeville circuit from 1920 to 1924. I would take that delicious tidbit — which some of her friends called a “deplorable theatrical exhibition”— and spin it into a one-woman show, “The Star of Happiness,” a move that shifted the direction of my life into the arts.
I created a piece that aimed to both celebrate and complicate Keller’s life story and that highlighted her frustrations at being asked to retell the same events of the “miracle” of education over and over. The term “inspiration porn” did not exist in her day, but she still managed to dismantle it by infusing her radical political views into her act. Channeling Keller made it clear to me that although she often put forth an uplifting message, she did not shy away from challenging her simplified public image and the assumptions held by the audiences who came to see her.
Helen Keller is back in the spotlight this week. On Tuesday, PBS premiered “Becoming Helen Keller,” an accessible, audio-described documentary that examines her whole dynamic and influential life, from radical leftist politics to thwarted love affair to travels around the world as an unofficial American ambassador after World War II. And, importantly, it does so while prominently featuring a cast of accomplished blind, deaf and deaf-blind scholars and artists as expert commentators, some of whom have moved past the too-good-to-be-true narrative of Keller’s life. “The story of the overcoming, saintly figure,” the blind author Georgina Kleege says, “I wish we could retire that.”
We’ve come a long way since “The Miracle Worker.” At some point, though, I found myself wondering why Keller is having yet another cultural moment. Why is it that America can’t seem to quit its infatuation with Keller? The blind, deaf and deaf-blind experiences are diverse; we have so many stories to tell. Yet we seem to fall back to Keller as a kind of shorthand for the disabled experience, as if there were just one. How can we move our understanding of disability forward by telling and retelling the story of this one amazing but decades-gone figure? Today’s disabled artists, writers and activists are responding to a world entirely changed since Keller gave her last speech in 1961. Yet, with some exceptions, our mainstream conversations about disability have stagnated.
I doubt that Keller, with her distinctly progressive leanings, would want us to remain with her in the mid-20th century. She might even be alarmed and a bit embarrassed to learn that we are still looking back at her instead of marching forward with the movements she helped build. As someone deeply involved with the unfolding social issues of her day, she would, I believe, prefer us to mark the astounding changes that have occurred: the Americans With Disabilities Act; the possibilities for accessibility that have come with the digital age; the flourishing of voices among disabled scholars, activists, artists, scientists and so many others. These changes seem barely to be recognized by our own mainstream culture today, in which honest and complex representations of disabled people are still rare and inspiration porn is still the norm.
The extremes of disabled representation that we usually find in mainstream media — superhuman disabled people on the one hand, pitiful creatures in need of a cure on the other — are created, almost exclusively, by nondisabled people for nondisabled people. This perhaps explains why they are so redundant and out of touch with our experience. It would be laughable if those images did not translate directly into discrimination in the workplace, in the medical establishment, in our creative institutions. I and other blind writers experience this in both obvious and subtle ways. For instance, we often hear from editors and other decision makers, “Oh, we like this work, but we just published a blind author.” Culturally speaking, it reinforces the idea that we can have only one blind person at a time in the room.
My fellow writers are those I know best, but there’s a growing community of disabled artists, thinkers, performers and creators, some of whom Keller may have applauded, others perhaps not. We don’t all have to agree; the numbers and variety is what’s important in order to crumble the monoliths that serve mostly to keep a majority of disabled people from flourishing. We gain strength in those numbers.
In my own journey of becoming a published author, I’ve had a lot of help from my fellow blind writers, such as Jim Knipfel, the first contemporary blind voice I’d ever read and whose New York Press column, “Slackjaw,” showed me that we could be funny and irreverent; and contemporaries like James Tate Hill, whose new memoir, “Blind Man’s Bluff,” tells the story of central vision loss similar to my own, dismantling the strict binary of sight and blindness. They’ve helped me negotiate the writing process and publishing industry in ways that sighted writers never could have.
Other writers are expanding disability culture in new and exciting ways. Elsa Sjunneson is a deaf-blind writer and editor whose forthcoming book, “Being Seen,” is a radical takedown of ableism, demanding that the nondisabled world adapt and change around the disabled body. John Lee Clark is a deaf-blind poet, essayist and Protactile educator with two books forthcoming. Protactile is a touch-based communication system developed by and for the deaf-blind community. Clark is the most well-connected person I know, with a deaf-blind network that is not just national but global. He has helped me to think about the flip side of accessibility and inclusion — the dangers and frustrations inherent in always clamoring to be let into the mainstream and the importance of creating our own culture based on the senses we enjoy. If we truly want more diversity in the stories we tell, then perhaps we need to make room for different ways of telling them.
So yes, let’s take a moment to celebrate Helen Keller, and then let’s imagine what it might mean to be like her, to do what she would do now — to work hard to communicate with all kinds of people, to fight for the rights of others as well as ourselves and to realize that acceptance and inclusion are ever-evolving things made possible by choice and determination, not by miracles.
M. Leona Godin is a writer, performer, educator and the author of “There Plant Eyes: A Personal and Cultural History of Blindness.” She has taught literature and humanities courses at New York University and has lectured on art, accessibility, technology and disability across the country. Her online magazine Aromatica Poetica explores the arts and sciences of smell and taste.
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