By Karen Gullo
Touring the Deep South, a young Muslim woman visits Elvis Presley’s birthplace on a hot, humid day in Mississippi. The visit happens to occur during Ramadan and normally she strictly abstains from food and water until sundown (though she’s not required because she has a disability). But there was something about being in Elvis’ place that made it OK to break the fast. “I did not want to die where Elvis was born,” she explains.
A Black woman in the Midwest takes a job running an organization that helps disabled people live independently, despite warnings from friends that the place was a “lost cause.” She remembers being called a “lost cause” because of her autism, and struggled for years to hold down a job. But she rejects the warning and goes to work, turns the organization around, decides to run for state office, and is elected to the board of a national nonprofit, the first disabled person to hold an executive position there. “Lost cause, indeed,” she says.
These are snippets from just two of the intensely personal contemporary narratives in Disability Visibility: First-Person Stories From The 21st Century, an anthology compiled and edited by disability activist, media maker, and consultant Alice Wong. Raw, compelling, funny, and always deeply moving, the stories reveal struggles and triumphs of 37 writers and activists with disabilities who grapple with living everyday lives in an ableist society that often sees them as different and flawed.
Alice Wong - Disability activist, media maker, and editor of “Disability Visibility: First-Person Stories From The 21st Century.” Photo credit: Eddie Hernandez Photography
It’s a struggle familiar to Wong, whose drive and belief in herself and her community has made her a leading voice advocating for disabled people in culture, society, politics, and literature.
“Staying alive is a lot of work for a disabled person in an ableist society, and that work has been a big part of my forty-six years on this planet,” Wong says in the book’s introduction.
Wong is the founder of the Disability Visibility Project in San Francisco, an online community about disability media and culture. No coincidence that the organization, which she runs herself, is also the name of the new book, illustrating the deep connection between the book’s celebration of the voices of writers who are disabled and Wong’s experience.
Born in a suburb of Indianapolis to Hong Kong immigrants, Wong has a neuromuscular disease that results in muscles weakening over time. She gets around in a powered wheel chair, and is dependent on a ventilator to breath and attendants to assist in everyday tasks like eating, dressing, and bathing.
As she told Vox in April, people are freaking out about health risks during the COVID-19 pandemic, but she and other disabled people have been living all their lives with uncertainty and have experience adapting to a health crisis—they’ve always had to adapt because the world “was never designed for us in the first place.”
She started Disability Visibility in 2000 as a one-year oral history campaign in partnership with Story Corp. It’s grown into an online community on disability media and culture, broadcasting podcasts, interviews and radio stories, hosting Twitter chats, and publishing essays about ableism and politics from the perspective of disabled people.
Wong’s advocacy for the rights of the disabled has been recognized by Time magazine, which this year named her as one of 16 people fighting for equality in America, and by Bitch Media, which named her one of 2018’s top 50 impactful activists in pop culture. In 2015 Wong was invited to the White House by President Obama for a celebration of the 25th anniversary of the Americans With Disability Act (ADA). She could not attend in person. Instead, she met the president using a telepresence robot, whose movements she controlled via her computer at home while her face and voice were projected on the robot’s “head”—a computer screen.
Wong has been speaking out frankly, and angrily, about COVID-19 and policy conversations about who deserves care as the pandemic spreads and creates competition for ventilators, masks, and hospital beds. Early in the pandemic, some states were drafting care guidelines that could lead to people with autism and other intellectual disabilities being denied access to lifesaving care.
Doctors treating COVID patients might look at the health history of a disabled person and decide that others with a better shot at survival are more worthy of getting a ventilator, Wong posits.
“I am angry seeing so many people outdoors not wearing masks or social distancing,” she said in a telephone interview. “They are going to create more infections, and more deaths,” and make it more difficult for high risk people to stay safe.
Disability Visibility, published by Vintage Books, an imprint of Knopf Doubleday Publishing Group, was released June 30 in time for the thirtieth anniversary of the ADA. “These stories do not seek to explain the meaning of disability or to inspire or elicit empathy,” Wong says in the book’s introduction. “Rather, they show disabled people simply being in our own words, by our own accounts.”
“Disability Visibility: First-Person Stories From The 21st Century” edited by Alice Wong and released in 2020. Book cover by Madeline Partner.
The book features essays, blog posts, Congressional testimony, and eulogies by writers who have very unique but also interconnected takes on life as disabled people in the U.S. Anna Kaufman, who edited the book for Vintage, calls the book an “urgent, vital call to arms.”
“These stories show how diverse the disabled community is, and that so many of the issues at hand are astoundingly intersectional -- there's something for everyone, and that affects everyone,” Kaufman said by email.
Contributors include Jeremy Woody, who was incarcerated in a Georgia state prison, and writes of the discrimination he experienced as a deaf prisoner in a system that offered no accommodations. “Prison is a dangerous place,” he writes, “but that’s especially important for deaf folks.”
Standup comic, actress, and activist Maysoon Zayid, in “If You Can’t Fast, Give,” says her cerebral palsy, which makes her shake “like Shakira’s hips,” finally forced her to stop fasting during Ramadan, a practice she misses dearly. Fasting is important, she says, but “it’s important not to die in the process.”
“I have participated in several other projects that highlight disabled voices, but the editors and decision makers did not identify as disabled and the compilation suffered because of it,” said Zayid in an email. “This anthology really does our community justice and serves as a great resource to our non-disabled audience so that we can stop educating them on Twitter.”
Throughout the book, contributors talk about being made to feel like they are people who are broken, in need of fixing, people who should be seeking a cure, a new medicine or therapy that will make them able. Through struggle and with courage, they write of rejecting the boxes they are put in and realizing that the mindset that identifies disabled people as broken is itself a sign of a society’s lazy disinterest in seeing them as people who are simply part of a world of diverse human beings.
“I felt like a piece of clockwork waiting to be fixed,” writes June Eric-Udorie, a journalist and activist who writes in the anthology about her life as a young woman of color living in London. Eric-Udorie was born with a congenital condition that causes her eyes to move involuntarily and partial blindness. Attending church at 15, her grandmother tells her to put the communion hosts soaked in wine on her eyes so that she can be cured. She was brought to many doctors, none able to cure her.
Nearing adulthood, Eric-Udorie writes, she goes by herself on a trip to Bath to see if she can overcome a fear of being independent, and “move through the world on my own terms.” Nothing bad happened on the trip. “I felt like a winner” sitting at a café on her own, she writes. Later, in London, she still attends church, not as someone “with a heart that is begging for the most special part of me to change,” she writes. “I come to church free. I come to church knowing that I am not a mistake waiting to be fixed.”
Karen Gullo is a freelance writer and former Associated Press and Bloomberg News reporter covering technology, law, and public policy. She is currently an analyst and senior media relations specialist at Electronic Frontier Foundation (EFF) in San Francisco.