Disability Visibility: First Person Stories from the 21st Century (Alice Wong, ed.)

Reviewed by Diane R. Wiener

In 2018, Alice Wong and the Disability Visibility Project (DVP) published the anthology, Resistance and Hope: Essays by Disabled People: Crip Wisdom for the People, which I had the privilege, pleasure, and honor of reviewing for Wordgathering. While there are many ways in which the 2020 collection continues the outstanding work begun in the 2018 anthology, there are myriad distinctions between these two excellent collections.

The Disability Visibility Project continues to share pragmatic, stellar resources centering the experience and expertise of disabled people, including podcasts, interviews, and a wide variety of networking and collaboration materials—in always-accessible, multi-formatted content. As noted in Wong’s online content regarding Disability Visibility, “The anthology is available in paperback, e-book, and audiobook (multiple retailers). It will be available on Bookshare.org soon.” The new collection features deeply focused and varied literary, autobiographical narratives by 37 disabled writers; the collected work’s goals, focus, and set-up summon the wisdom of disabled ancestors while forwarding the expertise of extant activist-scholars.

Before discussing specifics about the text, I want to make a few comments about the vibrant timing of the new volume’s publication (June 30, 2020). Its publication, now, is significant in a number of ways. Approximately three-and-a-half months into global life during a pandemic, COVID-19 continues to wreak havoc, demonstrating a disproportional influence on, risk for, and harm to BIPOC Disabled folx (Disabled folx who are Black, Indigenous, and People of Color)—including higher fatalities than among the “general” population. Local, national, and global insurgency against police brutality has exploded in solidarity with Black Lives Matter. Protests and myriad other forms of civic action demonstrate how a large number of people, world-wide, are refusing to accept a racist, ableist, misogynist, classist, homophobic, transphobic, status quo, when it comes to law enforcement or other forms of social policy and practice.

June is LGBTQIATS+ (Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual, Two Sprit, Plus) Pride Month, and, this year, marks the 51st anniversary of the Stonewall Rebellion/Uprising, on June 28, 1969. Disabled folx with marginalized genders and sexual orientations know well the impact of this “anniversary”; many of us reflect upon the relevance of marches rather than parades and niche marketing—although, for some, both arguably have purpose and value. For many Disabled, Deaf, Neurodivergent, Mad, and Crip people, this has already been or will be a summer of demarcation, transformation, and reflection, as July 26, 2020 will mark the 30th anniversary of the Americans with Disabilities Act (ADA). Activist writing, particularly by BIPOC, Queer, Disabled folx, is necessary—truly, vital—in this historic moment and cultural context.

Wong’s dedication is powerfully clear. She writes, “To my younger self, and all the disabled kids who can’t imagine their futures. The world is ours, and this is for all of us.” I hope that the coordinators of and contributors to the #LiveOn campaign and initiative utilize Wong’s new collection to advance their work, which includes “advice I would give to my younger disabled self.” As noted on the Live On website,

The Live On Movement is a disability-led project for people with disabilities to see how worthwhile life is. Life can be hard sometimes, and this is even more true for people living with disabilities. Young people with disabilities face bullying, youth and adults with disabilities can be forced into nursing facilities, and plenty of people and businesses still discriminate against us every day. Whether you were born with your disability, your disability has slowly progressed as you grew older, or you suddenly acquired your disability, the challenges you face are real. But you can get through them!

As the ADA@30 approaches, and thereafter, Wong’s collection is, will be, and shall remain deeply relevant to the National Alliance of Multicultural Disabled Advocates, an initiative of the Keri Gray Group, which focuses on “elevating the voices of people of color with disabilities.” NAMD Advocates have coordinated a “Names and Frames” segment of a virtual celebration to occur July 24-26, 2020. According to co-organizers, Conchita Hernandez and Jasmine Maddox, “Decolonizing Dreams: A BIPOC Celebration of the ADA at 30” will “commemorate the work and lived experience of disabled people of color.” NAMD Advocates are currently “collecting names,” seeking out bios of disabled ancestors of color. Folx are encouraged to fill out a form in order to participate and contribute.

On the cinematic world stage, Crip Camp and The Story of ADAPT have received sustained and well-deserved attention. Wong, a Netflix consultant, advised with Crip Camp’s impact campaign co-producers, Andraéa LaVant and Stacey Park Milbern. LaVant and Milbern created Crip Camp: The Official Virtual Experience, a series of summer workshops featuring disabled activists and organizers—including Alice Wong and Dr. Moya Bailey, discussing digital activism on July 12, 2020. In collaboration with Adobe, this innovative impact campaign also created a new fellowship for disabled artists/creators, in honor of Ki’tay D. Davidson. The book is divided into four sections—each entitled with a gerund (suggesting not only action, but emergence and organic flow): Being, Becoming, Doing, and Connecting. Talila A. Lewis’s magnificent essay—the second in the Being section—is entitled, “For Ki’tay D. Davidson, Who Loves Us.”

Disability Visibility engages with supplemental material and resources, and is accompanied by online content, as well—including a free, “plain language translation” by Sara Luterman and a free, online discussion guide by Naomi Ortiz, “to facilitate further discovery and conversation,” as Wong notes. Ortiz’s “guide can be used by educators, facilitators, organizers, book clubs, and anyone interested in examining the themes and questions by the contributors,” Wong explains. Reflecting on crafting the discussion guide, Ortiz notes,

Disability Visibility: First-Person Stories from the Twenty-First Century is what intersectional writing looks like. This diverse group of authors discuss a wide range of topics including identity, joy, parenting, fashion, crip time, crip space, and much, much more. In diving in and drawing out questions for readers, I endeavor to craft a discussion guide which honors these everyday stories and the wisdom they share.

Of her plain language translation, Luterman says,

It might be the first of its kind—[a] radical new kind of accessibility. There are popular books meant for adults that get adapted for younger readers. More nonprofits have been putting out plain language explainers in the past few years. But this is the first adult work of nonfiction in plain language. I’m grateful Alice asked me to do it. It’s an absolutely brilliant idea. And I’m excited about the results.

Luterman goes on to explain the process of how the translation was accomplished—a compelling read, all on its own, and consistent with the transparency and assertiveness readers have come to expect from Alice Wong, and anything with which or anyone with whom she is affiliated or associated.

The book begins with Wong addressing her audience. Her introduction communicates kindly and directly to a combination of would-be readers: folx who are very likely to feel validated in finding wonder and self-recognition, as well as people who will perhaps be unfamiliar with some if not many of the conceptualizations and assertions in the volume. Wong notes that in creating the collection she wanted to celebrate the ADA’s 30th anniversary, intended to share first-person narratives from a variety of disabled people’s experiences in the world today, and sought out the opportunity to engage in a kind of community organizing through literature and memoir. She describes her understanding of “community” in several ways—as political, magic, power, and resistance—infusing each descriptor with her own peppered narratives (including great content on #CripTheVote and #CripLit, among other subjects).

The four main sections have content notes to give readers information about what to expect with respect to potentially distressing content. Wong states in the introduction, “This may feel true for every era, but I believe I am living in [a] time where disabled people are more visible and vibrant than ever before. And yet while representation is exciting and important, it is not enough. I want and expect more. We all should expect more. We all deserve more” (emphasis in original).

Wong goes on to discuss nuance and complexity being needed in media representation, and how the continuous absence of disabled individuals in the publishing industry is an insult to all involved that must be remedied. Mutability and complexity in terms of what “disabled” means are part of the introduction’s conclusion.

Beginning with Harriet McBryde Johnson talking assertively about her life trajectory, including work with Not Dead Yet, and concluding with s. e. smith’s discussion of crip space(s), the book is a sincere, beauteous, badass collection. Stacey Park Milbern’s chapter, “On the Ancestral Plane: Crip Hand-Me-Downs and the Legacy of Our Movements” is especially tough to read without emotion, right now, given Milbern’s deep and abiding friendship with Wong (and so many others), and the unconscionable loss of her in the wake of her recent death at 33. However, being emotional is part of the disabled experience, and needn’t be avoided or pathologized, as many of the authors articulate cogently. We should expect more, indeed, including the right to our own experiences, variances, and emotions. This assertion has always been true, is true now, and shall be true, always—as this collection’s contributors and Wong, herself, make clear in a welcoming while unapologetic way. Dare I say it? Yes, I hope this book “goes viral.”

Title: Disability Visibility: First Person Stories from the 21st Century
Editor: Alice Wong
Publisher: Vintage Books
Date: 2020

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About the Reviewer

Diane R. Wiener became Editor-in-Chief of Wordgathering in January 2020. A poet since the age of seven, her first full-length poetry collection, The Golem Verses, was published in 2018 by Nine Mile Press. Diane’s poems also appear in Nine Mile MagazineWordgatheringTammyQueerlyThe South Carolina Review, and elsewhere. Her poetry is forthcoming in the anthology, Welcome to the Resistance: Poetry as Protest (Stockton University Press). Diane’s creative nonfiction appears in Stone Canoe and Mollyhouse; her flash fiction appears in Ordinary Madness (Weasel Press). After serving as Guest Editor for Nine Mile Literary Magazine’s Fall 2019 Special Double Issue on Neurodivergent, Disability, Deaf, Mad, and Crip poetics, Diane was appointed Assistant Editor for the magazine. The Founding Director of the Syracuse University Disability Cultural Center (2011-2018), Diane now serves as a Research Professor and as the Associate Director of Interdisciplinary Programs and Outreach for the Burton Blatt Institute at Syracuse University, where she also teaches in the Renée Crown University Honors program. She has published widely on disability, pedagogy, and empowerment, among other subjects. Diane is a proud Neuroqueer, Mad, Crip, Gender Nonconforming, Jewish Pantheist Nerd (etc.). She blogged for the Huffington Post between May 2016 and January 2018. You can visit Diane online at: https://dianerwiener.com.