There is a popular phrase among people with disabilities across the United States: “nothing about us without us.” As the 30th anniversary of the Americans with Disabilities Act approaches in July, a spate of new and forthcoming titles suggests that this idea may be taking hold in the publishing industry.
In Being Heumann (Beacon, out now), disability civil rights leader Judith Heumann vividly describes how disability rights activists fought for changes that were resisted by many but are common sense today, including curb cuts, elevator regulations, and universal special education. Born in Brooklyn in 1949, Heumann contracted polio as a child and has used a wheelchair since. In the ’70s, she led a major sit-in—the subject of the newly released Netflix documentary Crip Camp—that paved the way for the ADA, and she later rose to positions of prominence, serving as a U.S. assistant secretary for education and later in the State Department as the first special advisor for international disability rights.
What she hadn’t done was write a book. “People for years have been telling me to write a book,” Heumann said. “I never thought that would happen. I’m a good storyteller, but I’m not a confident writer.”
In 2018, Heumann was connected with writer Kristen Joiner and the two came up with a process. Joiner interviewed Heumann every weekend for two months while conducting extensive primary source research that she brought back and used to interview Heumann further, but first Joiner had to confront her own ableist views.
“I dismissed the project,” said Joiner, who initially found Heumann’s story uncompelling. But then Joiner reflected on how her dismissal was akin to the excuses people use to defend casual racism and sexism. “Because we don’t hear or see stories in the media about disabled people as agents of change, and love, and deepening our understanding of society, but instead as pity stories, we unconsciously absorb this message that the universal themes of a disabled person’s story would not apply to all of us,” she said. “I think that’s ableism.”
Joiner recognized that the existing material on Heumann’s work had downplayed her achievements, which was a reflection of the wider ableism that writing the book could help address. She recognized that, “we read Martin Luther King Jr. because we know we’re going to read about universal themes, societal change, and what it means to be human, and that was Judy’s story, too. It just had to be told differently.” This realization led Joiner to revisit the book idea, and then to her co-authorship of the book.
The result is a work that is being considered for film deals, and major acclaim for Heumann, who made an appearance in early March on the Daily Show with Trevor Noah. Heumann said more is needed. “There are more books that are coming out [about people with disabilities], there is more attention being paid, but I think in reality we should be much further than we are today.” She also wants to see greater representation of a diverse spectrum of people with disabilities working in the publishing industry.
That diversity is the underpinning of the 37 personal accounts in Alice Wong’s anthology Disability Visibility: First Person Stories from the 21st Century (Vintage, June). Wong, the founder of the Disability Visibility Project and a cofounder of the voting rights movement #CripTheVote, was born with a neuromuscular disability and has made it a mission to connect the diverse voices of disabled people who appear in the anthology and project them into public conversation.
“At the heart of it, I am a fan of disabled writers and culture,” said Wong, who had to learn the process of working with a major publishing house while working with each of the contributors to meet deadlines. “As a newbie, I learned a lot of terms in the publishing world, the process of creating a book, and the different roles and responsibilities of all people involved in this project.”
Wong said the finished work is “a glimpse into the complexity and diversity of the disability experience. Each piece I selected is powerful, personal, and political. I’m very careful to describe this book as a small sample of the current disability experience that’s not meant to represent all disabilities or give a basic 101 about what it’s like to live with a disability.”
While Heumann and Wong are reaching out to people where they are, students come to study with Jaipreet Virdi, an assistant professor at the University of Delaware. Virdi, who is deaf, is a historian of medicine, technology, and disability. Part memoir, part historical monograph, Virdi’s Hearing Happiness: Deafness Cures in History (Univ. of Chicago, Sept.) breaks the mold for academic press publications.
“I had this moment when I returned after spending weeks at the archives sorting through materials to find stories of deaf people,” Virdi said, “where I came across a folder containing my childhood medical records and results from the hearing tests. That moment was quite emotional, because it was the first time that I saw myself—and my story—as part of this intertwined history of deafness. It occurred to me that I couldn’t write this history without putting myself in it as well. There was no way to tell this story about deafness without revealing my own.”
The process of writing the book was difficult for the academically trained author, but Virdi settled on a story in which her own experience guides readers through generations of attempts to cure deafness, from ear trumpets to CRISPR genetic editing technology—an idea whose premise of “normal” and “defective” she dismantles. “About 20% of Americans, roughly some 48 million people, have some degree of hearing loss,” she said. “This persistent need to fix and cure is part of the long history of stigma against deafness that oppresses individual freedom.”
In More Alike Than Different: My Life and Lessons for Everyone (Prometheus, July), activist, writer, and athlete David Egan describes a life forged in making the most of personal freedom that people with the author’s disability did not previously have. The book, the publisher claims, is the first major published work by an author with Down syndrome, and Egan, age 42, begins by describing the outlook for people like him when he was born compared with the outlook today. The differences in life expectancy and autonomy are stark, and poring over years of speeches he has given as a disability rights advocate to write the book with his mother, Kathleen Egan, Egan could see his own role in those advances, whether as a competitive swimmer or a Joseph P. Kennedy Fellow walking the halls of Congress.
“I belong to the first generation of people with Down syndrome to break free from the institutions that robbed us of our potential for productive lives,” Egan told a gathering of Prometheus sales reps at a recent conference. He can now look back on a lifetime of making the most of his own potential—a fact that he reminded his publisher’s sales reps of. “People with disabilities do not want or need pity. What we need, most of all, is to be accepted for who we are and given an opportunity to succeed like anyone else.”
The authors say that until publishers acquire more books like theirs, the opportunity to succeed will be denied to too many, at the expense of writers and readers alike. “Soliciting more books by disabled writers won’t address the way disabled writers are perceived from the industry’s nondisabled lens on what’s ‘compelling’ or ‘marketable,’ ” Wong said. “Publishers need to create professional opportunities for disabled people who want to break into the industry—especially editors. When we have more people willing and open to identifying as disabled in publishing, we will see a lot more fantastic work by disabled writers. This is long overdue.”
This article has been updated.
