Disability Visibility: First-Person Stories from the Twenty-first Century

Disability Visibility: First-Person Stories from the Twenty-First Century (2020) is an anthology of 37 nonfiction essays collected by disability rights activist Alice Wong. Each essay concerns a different aspect of what it means to be disabled, and the volume includes writings from people with physical, intellectual, psychiatric, and sensory disabilities. These essays center a broad array of topics, including medical trauma, personal relationships, career success, family dysfunction, art, activism, history, and politics.

Disability Visibility’s model of disability studies and activism is thoroughly intersectional. Most of the contributing authors are queer, women, and/or people of color. Many of them draw specific attention to how these identities intersect with their disabilities and disabled status. Many are also multiply disabled, which they explore in varying degrees of detail.

This text is one part of a broader effort called the Disability Visibility Project (DVP). Spearheaded by Wong, DVP is an ongoing multimedia project and digital community dedicated to collecting, preserving, and sharing disability media and culture. This banner includes several other books, a digital archive, a podcast, and a blog. Like DVP, Disability Visibility aims to capture and share a broad range of disabled experiences and perspectives. To make the text widely accessible, it is available in a variety of formats including an audiobook, a braille edition, a plain language summary, and an adaptation for young readers.

This guide references the eBook edition from Vintage Books, published in 2020.

CONTENT WARNING: This text (and this guide) contains extended discussions and depictions of ableism, medical abuse/malpractice, sexual assault, racism, sexism, classism, antisemitism, islamophobia, anti-queerness, eugenics, Nazism, physical injury, serious illness, and compulsory institutionalization. This book also contains frank discussions and depictions of human bodies, bodily fluids/waste (e.g.: blood, vomit, excrement, urine), sex and sexuality, and physical pain.

Summary

In her Introduction, editor Alice Wong introduces her work and the ethos behind this book: “I want to center the wisdom of disabled people […] Collectively, through our stories, our connections, and our actions, disabled people will continue to confront and transform the status quo” (xxii). The anthology comprises 37 nonfiction essays written by people with disabilities.

Harriet McBryde Johnson’s “Unspeakable Conversations” recalls her formal debate with Dr. Peter Singer at Princeton. On a personal level, Johnson finds Singer respectful and pleasant, but she regards his beliefs as genocidal towards disabled people.

“For Ki’tay D. Davidson, Who Loved Us” is a eulogy for disability rights advocate Ki’tay Davidson written by his surviving partner, Talila Lewis. Lewis celebrates Davidson’s identity as a Black, disabled, transgender man.

“If You Can’t Fast, Give” is a reflection by Maysoon Zayid, a Muslim performer with cerebral palsy. She writes about her experiences fasting during Ramadan.

In “There’s a Mathematical Equation that Proves I’m Ugly,” Ariel Henley describes the difficulties of growing up with facial deformities. The essay is built around a seventh-grade art lesson in which she recalls being taught “the golden ratio,” a mathematical formula created to objectively measure facial attractiveness.

“The Erasure of Indigenous People in Chronic Illness” recalls Jen Deerinwater’s experiences with anti-Indigenous racism in medical settings.

June Eric-Udorie’s “When You Are Waiting to Be Healed” charts her journey of self-acceptance. She grew up in a deeply religious family; her family members only acknowledged her disability when praying for God to “heal” it. As a young adult, Eric-Udorie finds a greater level of independence and self-esteem by acknowledging and accepting her disability.

“The Isolation of Being a Deaf Person in Prison” describes Jeremy Woody’s traumatic experiences as a deaf prisoner.

“Common Cyborg” concerns author Jillian Weise’s exploration of cyborg identity. She uses a prosthetic leg and defines cyborgs as disabled people who have technology incorporated into their bodies. She also refutes transhumanism from a disabled perspective.

“I’m Tired of Chasing a Cure” follows Liz Moore as they navigate life with chronic pain and bipolar disorder. Though they identify many things “wrong” with their body, they are tired of seeking relief through medicine and spiritual healing.

“We Can’t Go Back” by Ricardo T. Thornton Sr. is an excerpt from his statement before the US Senate. In it, he recounts his life’s story and argues that the intellectually disabled are fully capable of participating in society.

“Radical Visibility” discusses Sky Cubacub’s clothing brand, Rebirth Garments. Rebirth’s stated mission is to create fashionable and functional clothing for disabled and gender-nonconforming people.

Haben Girma’s “Guide Dogs Don’t Lead People. We Wander as One” centers on the dynamic she shares with her seeing-eye dog Mylo and describes the sensory experience of navigating together.

“Taking Charge of My Story as a Cancer Patient at the Hospital Where I Work” follows Diana Cejas through her residency at a hospital, centering on the fallout from her stroke and cancer diagnosis. She notices a unique social element to working at the hospital where she received treatment and struggles to adjust. As she recovers and progresses in her career, Cejas starts talking about her experiences on her own terms and hears other people’s stories in return.

Sandy Ho’s “Canfei to Canji” contends with her intersecting identities which are often in tension with each other. She is a disabled Asian American and the child of immigrants. Her parents immigrated to the United States in the 1980s, just prior to the rise of disability acceptance in China. As a result, they struggled to parent Sandy while contending with the assumption that disabled people are canfei—“a useless burden.”

“Nurturing Black Disabled Joy” is a reflection on hard-won hope by Keah Brown. Though she was initially a pessimistic, angry, and skeptical person, Brown now embraces the pursuit of joy and “living unapologetically.”

“Last but Not Least” describes Keshia Scott’s exploration of her sexuality. As a blind person, she initially took umbrage at the thought that she might be asexual because she’d been exposed to the ableist myth that all disabled people are either sexless or hypersexual. At the time of writing, she gladly embraces asexuality.

In “Imposter Syndrome and Parenting with a Disability,” Jessica Slice describes the way her disability limits her movement and how that impacts the way she raises her son.

“How to Make a Paper Crane from Rage” uses origami folding as a metaphor for suppressing one’s rage. Elsa Sjunneson writes about losing her father to AIDS, enduring sexual assault, and experiencing ableism.

“Selma Blair Became a Disabled Icon Overnight. Here’s Why We Need More Stories Like Hers” praises actress Selma Blair for her poise and confidence in the public eye after announcing her multiple sclerosis (MS) diagnosis. As a disabled person herself, author Zipporah Arielle is moved by seeing her experiences reflected in mainstream media.

“Why My Novel Is Dedicated to My Disabled Friend Maddy” by A. H. Reaume is an acknowledgment and celebration of disabled collaboration. Reaume and her friend, Maddy Sloan, have each sustained brain injuries that impact their abilities to function on a day-to-day basis. Reaume writes that she physically could not have finished her novel without Sloan’s help.

Rebecca Cokley’s “The Antiabortion Bill You Aren’t Hearing About” is a 2019 response to Texas Senate Bill 1033, which would ban abortion in the case of “severe fetal abnormality.” Though the bill is framed as a defense of disabled lives, Cokley identifies it as an assault on bodily autonomy.

“So. Not. Broken.” is Alice Sheppard’s exploration of what it means to be a dancer who uses a wheelchair.

“How a Blind Astronomer Found a Way to Hear the Stars” is a transcription of Wanda Díaz-Merced’s TED Talk on how her blindness led her to innovate as an astronomer.

“Incontinence Is a Public Health Issue— and We Need to Talk About It” addresses the shame and stigma attached to incontinence. Author Mari Ramsawakh demonstrates why this creates health risks for the people who suffer from it and presents her own experiences with incontinence as a case study.

In “Falling/Burning,” Shoshana Kessock uses comedian Hannah Gatsby’s special Nanette to explain her experience of being an artist with Bipolar II. Kessock refutes the idea that artists must suffer to achieve greatness by sharing her history with medication and productivity.

In “Six Ways of Looking at Crip Time,” Ellen Samuels explores the concept of “crip time,” defined by author Margaret Price as a “flexible approach to normative time frames” (175). Samuels explains the solitude and confusion she feels by creating six different iterations of crip time.

“Lost Cause” follows Reyma McCoy McDeid from early childhood to the time of writing. The essay is structured around moments in which she was told that she or something she was pursuing was a “lost cause.” She also explores the intersection of ableism, sexism, and racism and how it affects her.

“On NYC’s Paratransit, Fighting for Safety, Respect, and Human Dignity” recounts Britney Wilson’s experiences with Access-A-Ride, New York City’s paratransit service. Wilson’s testimony depicts Access-A-Ride as an extremely flawed service that overworks its drivers, wounds its disabled user base’s dignity, wastes their time, and even puts them in danger.

“Gaining Power Through Communication Access” is an excerpt from an interview with Lateef McLeod. The interview was conducted by Alice Wong on the Disability Visibility podcast. McLeod uses augmentative and alternative communication (AAC) as disability aids. He describes his history with AAC and other assistive technologies.

“The Fearless Benjamin Lay” simultaneously celebrates the life of the titular 18th-century abolitionist and little person. Author Eugene Grant, a self-identified dwarf person himself, also challenges Lay’s modern-day obscurity.

“To Survive Climate Catastrophe, Look to Queer and Disabled Folks” urges the reader to use multiply oppressed communities’ knowledge of survival to avert climate disaster.

“Disability Solidarity” is a document undersigned by the members of the Harriet Tubman Collective. It argues that social justice movements and discussions around police violence against Black people are incomplete without active anti-ableist praxis.

“Time’s Up for Me, Too” contains author Karolyn Gehrig’s appraisal of the “Time’s Up” and “Me, Too” movements, especially in Hollywood. As a disabled survivor of sexual assault, Gehrig feels that she and her disabled aunt, Virginia, are excluded from these movements.

“Still Dreaming Wild Disability Justice Dreams at the End of the World” consists of both poetry and prose. It concerns what it means to be disabled in times of widespread crisis and explores what disabled people can provide to social justice movements, including climate justice and protests against ICE concentration camps.

Jamison Hill’s “Love Means Never Having to Say… Anything” reflects on his relationship with his girlfriend, Sharon. Both have myalgic encephalomyelitis. Although they are unable to care for one another as able-bodied partners might, their shared experiences result in an extremely strong bond.

Stacey Milbern’s “On the Ancestral Plane” uses her favorite pair of shoes (“crip socks”) as a framing device to explore her ideological and cultural heritage as a disabled person.

“The Beauty of Spaces Created by and for Disabled People” describes what it feels like to be a disabled person in a majority-disabled audience at a dance recital created and performed by disabled people.