GOOD READ – Disability Pride: Dispatches from a Post-ADA World
An Excerpt From the Diverse Disability Community
March 2, 2023
Editor’s note: “Disability Pride: Dispatches from a Post-ADA World” by Ben Mattlin is a collection of essays that explores the lives of people with disabilities in the US after the Americans with Disabilities Act (ADA) was passed in 1990. It challenges the societal notion that people with disabilities are “less than” and calls for the acceptance and celebration of disability as a natural aspect of human diversity. The book features personal experiences of those with disabilities and highlights discrimination, stereotypes, and limited access to transportation, education, and employment faced by them. Mattlin advocates for greater inclusion and representation of people with disabilities in all aspects of society. Below is an excerpt from chapter 7 of Mattlin’s book, which outlines the observations of a woman living with spinal muscular atrophy, which requires her to use a motorized wheelchair.
“Excerpt from Chapter 7: Visibility, Community and Context”: One champion of using computers to rally disability activism and amplify disability perspectives is Alice Wong, a woman in her early forties who was born with spinal muscular atrophy (SMA), a congenital muscle weakness. She uses a motorized wheelchair and, until recently, wore a Bi-Pap mask over her nose that’s connected to a ventilator device. (She now has a tracheostomy, reached connects to the ventilator device.) Growing up in Indianapolis, Wong graduated from high school two years after the ADA passed—an event which, she has said, inspired her to dream big. “Learning about disability history and realizing I was a member of a protected class encouraged me to imagine and create the life that I want,” she writes in the New York Times in 2017.
Wong went on to earn a master’s in medical sociology and worked for more than a decade as a research associate at the University of California, San Francisco, where she served as vice chair of the Chancellor’s Advisory Committee on Disability. In 2013, not yet forty, Wong was appointed by President Obama to the National Council on Disability. But her career as a semi-public figure really began in 2014, when Wong launched the Disability Visibility Project, a series of recorded interviews with a broad variety of disabled folks. Originally an ambitious partnership with NPR’s StoryCorps, intended to recognize and build “an online community dedicated to creating, sharing and amplifying disability media and culture,” according to the website, the project soon became a multimedia powerhouse. From there, her activism spread almost nonstop. “With the disability community,” she writes, “I share our stories and speak out against threats to our future by using my privilege and tools such as social media.”
In 2015, for a White House celebration marking the twenty-fifth anniversary of the ADA, Wong met Obama remotely via an Internet powered robot (flying to the event was inaccessible for her), an occasion which itself became a media sensation. She was the first person to attend a White House event in this way. In 2016, she partnered with Andrew Pulrang, a blogger and Forbes contributor, and Gregg Beratan, a New York-based disabled writer and activist with the Center for Disability Rights, to launch a nonpartisan online campaign called #CripTheVote, to encourage political participation by and for disabled people and make candidates pay attention to their disabled constituents. In 2017, the Disability Visibility Project was adapted into a podcast. In 2018, Wong edited and published Resistance and Hope: Essays by Disabled People, a collection of provocative pieces by a cross section of disability activists, many of whom were people of Color, lambasting the Trump administration and generally targeting enemies of fair play and equality. Around that time, with fellow disabled authors and activists Vilissa Thompson and s. e. smith (not to be confused with S. E. Smith, the science fiction writer), she started DisabledWriters.com to promote disabled authors and journalists and to help editors connect with them. With novelist Nicola Griffith, she created #CripLit, a series of Twitter chats for disabled writers. In 2019, Wong cofounded Access Is Love, a campaign to “build a world where accessibility is understood as an act of love instead of a burden or an afterthought,” according to promotional material. Her partners in the project were Mia Mingus, the Disability Justice writer and organizer mentioned in chapter 6, and Sandy Ho, a research associate with the Lurie Institute for Disability Policy at Brandeis University, instructor of disability studies at Lesley University, and a community organizer focused on Disability Justice and intersectionality. In February 2020, Time magazine named Wong one of sixteen standout people or organizations that were “fighting for a more equal America.” Later that year, Disability Visibility: First-Person Stories from the Twenty-First Century was published—a consummately curated collection of short pieces Wong introduced and edited, some familiar and others new. Later that year, at the height of the COVID pandemic, she launched the hashtag #HighRiskCovid19 to draw attention to the particular concerns of many disabled or chronically ill folks. In 2022, she published a memoir, Year of the Tiger: An Activist’s Life.
But the goals she’d originally set out to achieve proved harder than expected. “When you are disabled and rely on public services and programs, you face vulnerability every day,” she writes. “This vulnerability is felt in my bones and my relationship with the state. Fluctuations in the economy and politics determine whether my attendants will receive a living wage and whether I’ll have enough services to subsist rather than thrive. The fragility and weakness of my body, I can handle. The fragility of the safety net is something I fear and worry about constantly.”
Ben Mattlin is a frequent contributor to the Washington Post, New York Times and Financial Advisor magazine. His work has also appeared in the Los Angeles Times, Chicago Tribune, and USA Today, and has been broadcast on NPR’s Morning Edition. Ben is the author of DISABILITY PRIDE: Dispatches from a Post-ADA World, MIRACLE BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity, and IN SICKNESS AND IN HEALTH: Love, Disability, and a Quest to Understand the Perils and Pleasures of Inter-abled Romance
Mattlin is a Los Angeles-based freelance writer, author and frequent blogger for FacingDisability.com. He was born with spinal muscular atrophy, a congenital muscle weakness that causes paralysis and related health issues.