Disability Visibility: First-Person Stories from the Twenty-First Century is a collection of writing by disabled people, edited by disabled activist, media maker and research consultant Alice Wong. Founder and director of the Disability Visibility Project, an online community supporting and amplifying disability media and culture, Wong also co-produces and hosts the Disability Visibility podcast and partners in numerous other disability rights initiatives. This collection, as Wong writes in her introduction, “brings all of these collaborations, connections and joys to the page.”
The collection’s four parts—Being, Becoming, Doing and Connecting—feature the diverse and poignant writing of disabled and chronically ill activists, artists and authors. It also includes the accounts of a medical trainee, a fashion designer, and a scientist, among others. Their stories come in various forms: essays, speeches, an interview, a eulogy, as well as a statement and call to action by the Harriet Truman Collective. They relay a wide array of experiences, each an invaluable glimpse into what it might mean to live with a disability—sometimes multiple disabilities—in an ableist society. The struggles of inhabiting a marginalized body, of navigating the world through it, come alive in each of these accounts, urgent and pressing. The thirty-eight pieces Wong assembled depict not only these struggles, but also the many ways they can be and are overcome—the joy and inherent meaning of being alive.
In the collection’s first essay, “Unspeakable Conversations,” late author, attorney and activist Harriet McBryde Johnson examines her exchanges with the philosopher Peter Singer. While supporting animal rights and vegetarianism, Singer also supports the infanticide of disabled babies; he has advocated for parents like Johnson’s to have the right to choose to kill their babies, to “exchange” them for nondisabled ones. In accordance with preference utilitarianism, these acts would prioritize the lives of nondisabled babies who, it is assumed, would have a “greater chance at happiness.”
Johnson’s recounting draws a dense, complex and layered picture of her discussions with Singer. While held in general terms, these discussions—subtle and piercing at once—attempt to answer the unthinkable question of whether or not Johnson had the right to exist. But the assumption at the root of this question—that disability makes a person, and those around them, “worse off”—is challenged in Johnson’s writing, as it is in the writings of many of the collection’s contributors.
In “Being,” the collection’s first section, I was struck by June Eric-Udorie’s account on accepting the permanency of her congenital idiopathic nystagmus—a condition where the eyes move in small, involuntarily back-and-forth movement. “I come to church happy in the body that I exist in,” she writes at the end of her essay, “I do not come to church with a heart that is begging for the most special part of me to change.” I was also horrified, in Jeremey Woody’s account (as told by Christine Thompson) by the maltreatment and abuse he suffered as a deaf person in prison: often deprived of services offered to other inmates, not provided with an interpreter during medical appointments, and held in shackles in disciplinary court, where he was expected to communicate but had no way to do so.
In “Becoming,” a few pieces that stood out to me were Haben Gima’s short essay on his relationship with his guide dogs; Diana Ceja’s becoming a patient in the hospital where she works; Sandy Ho’s thoughts on the power of names and Keah Brown’s mission of embracing joy, of living unapologetically. I was also touched by Jessica Slice’s account on parenting with a disability—on the power and value of a parent’s presence, even if not always physical, in their child’s life.
In “Doing,” A.H Raume’s connection with Maddy, a fellow disabled friend who helped her finish her novel, made me consider the many ways in which we can give. Rebecca Cokley on being a pro-choice disabled person and Alice Sheppard on her work as a choreographer incorporating a wheelchair, were both interesting and important takes on the body. Another piece that captivated me was by Wanda Díaz-Merced—an astronomer who, after losing her sight, found a way to hear the stars she could no longer see, through a process called sonification.
In “Connecting,” Petty Berne’s essay (as told and edited by Vanessa Raditz,) embarked on an interesting exploration of the similarities between queer communities’ confrontations with a racist, homophobic and transphobic society, and the confrontation of humanity with climate change at large. “When we begin to see our own diversity reflected in the ecology of this planet,” Berne writers, “we can also recognize that the same forces threaten both. It’s not difficult to see the parallels in the havoc that capitalism has wreaked on our bodies as queer people[…].” Jamison Hill’s essay on his relationship with Shannon, a fellow chronically ill person and his partner, moves through and beyond the chronic illnesses that both connect and separate them.
The truth is, I was deeply moved by more pieces than I could name here. And many of them make me think back to Johnson’s essay.
Though not without self-questioning and inner conflict, Johnson was able to see Singer as a person. She resisted the idea that he was a monster—an idea shared by many in the disabled community, as well as her family and friends. Despite his views, Johnson considered him human. If she defined him as a monster, Johnson thought, she “must so define all those who believe disabled lives are inherently worse off[…] That definition would make monsters of many of the people with whom I move on the sidewalks, do business, break bread, swap stories, and share the grunt work of local politics.” Johnson did not want to do that—she did not want to set these people, however ignorant—apart from human society. In a way, many of the pieces in this collection call for a similarly necessary and well overdue consideration: for the lives of disabled people to be acknowledged for their irreducible humanity, brought in from the sidelines, and included within the frame of human society, as part of its tissue.