Reading Lists

In these novels, essays, and poems, disability is a form of knowledge that can reshape an inaccessible world

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It is often said that everyone will become disabled if they’re lucky to live long enough. However true, the statement is also incomplete. For the lucky ones, disability is not an illness, disorder or condition. Disability is a form of knowledge. It is scholarship. It is an ethics of care. It’s the blueprint we all need to redesign our world.

I was diagnosed with a spinal cord tumor seven years ago. Surgery removed the tumor and left me with an incomplete cervical spinal cord injury. I spent days, weeks, and months relearning how to walk and use my hands. I learned the hard way that there is no “getting back to normal,” and instead began a new relationship with my body and a new identity as a disabled Black woman.

In my debut, *Authentic: The Myth of Bringing Your Full Self to Work, *I recount my disability journey because I experienced the greatest friction between who I was and who I was allowed to be after I returned to work—the very place that pinky promises to reward those who “come just as you are.” *Authentic *examines what it means to be a person within institutions that trade on our identities when it’s convenient and profitable. Disability taught me how to move—literally and figuratively—among people, places and policies that barely meet the threshold of federal compliance, much less genuine care. While *Authentic *is not about my disability, my experience with disability is why *Authentic *exists.

Like our bodies, the following reading list cannot be contained by labels. I’ve included novels, essays, poetry, and memoirs that in one way or another touches on disability identity. This is not about representation. With their skillful pens, each author’s exploration of disability reorients our path toward personhood and justice.

The Cancer Journals by Audre Lorde

I learned about The Cancer Journals two years after my diagnosis. I hoped reading Lorde’s intimate accounting of her breast cancer survivorship would guide me through my own journey of what it means to build a life after thinking you might die. In this mix of journal excerpts, essays, and speeches, we see Lorde thinking out loud, working to define herself and her politics with her cancer, not despite it. I found some of Lorde’s most notable quotes in The Cancer Journals; quotes I’ve used often without knowing their source text. For example, “When I dare to be powerful, to use my strength in the service of my vision, then it becomes less important whether or not I am unafraid.” Disease and disability constitutes Lorde’s scholarship on radical self-preservation. We do not get “silence will not protect you” without Lorde’s cancer journey. As readers, we must integrate Lorde’s first cancer experience with the art she created in its wake.

*Super Sad Black Girl *by Diamond Sharp

*Super Sad Black Girl *reckons with suicidality and its mental and emotional unmooredness. Across these poems, Sharp’s speaker is tethered through place and art. We see the speaker in constant conversation with playwright Lorraine Hansberry (who died from pancreatic cancer at age 34) and fellow Chicagoans Gwendolyn Brooks and Margaret Walker. These literary foremothers reach out from The Other Side to remind us, “Black girls don’t get free . . . Black girls have always been free. We’re from the future.” Even those who discount mental disorders or suicidality as “disability” cannot deny its disabling impacts on daily living. *Super Sad Black Girl *reminds those of us struggling with acute or chronic mental disorders that we are not alone.

Between the Devil and the Deep Blue Sea by Khadijah Queen

A Navy veteran who did not see combat. A physical disability invisible to others. Poet Khadijah Queen’s debut memoir, Between the Devil and the Deep Blue Sea, complicates our learned assumptions about what a disabled veteran looks like. The book* *follows a young Khadijah from her working class job at RadioShack in Inkster, MI to joining the Navy as one of the few female recruits aboard a naval ship. From bootcamp to deck duty, Queen’s account of her military service shows disability is not a matter of individual illness; it’s institutional violence. Queen illustrates how persistent sexism, racial isolation, and a culture of silence, hazing, and brutal physical exhaustion wears on the soul and body. She joined the Navy to escape her life, and left to save it. Despite the constant surveillance that comes with living and working in small quarters, Queen finds poetry as a creative outlet, which ultimately led to her distinguished literary career we know today.

*Death of the Author *by Nnedi Okorafor

In *Death of the Author, *protagonist Zelunjo “Zelu” Onyenezi-Onyedele is unceremoniously fired from her university teaching position and her novel is rejected again. As if her own sense of failure isn’t enough, Zelu’s large Yoraba-Igbo Nigerian family of overachievers judges her every move. Their hovering is also a habituated response to anything Zelu has done in the decades since a childhood accident paralyzed her. Running out of both money and f–s to give, Zelu moves back into her parent’s wheelchair unfriendly home and feverishly writes *Rusted Robots, *a new sci-fi novel unlike anything she’s written before that catapults her career. *Death of the Author *is set in a now-ish world where Zelu gets around town with self-driving cars, but *Rusted Robots, *the book-within-the-book, is a far-future epic tale about an ongoing war between AI and androids. Chapter by chapter, Zelu’s real and imagined worlds begin to blend, presenting an interesting paradox about how technology can (and can’t) help us belong to our own bodies.

A Dangerously High Threshold for Pain by Imani Perry

MacArthur Fellow and National Book Award winner Imani Perry’s *A Dangerously High Threshold for Pain *follows Perry’s diagnosis journey with two autoimmune disorders: lupus and Graves’ disease. Her prose is gorgeously lyrical and searingly precise about our learned disregard of pain and chronic illness, especially in Black people, women, mothers, and those whose bodies exist at the intersections. From the early, intimate signs of illness to asserting COVID-19 as a mass disabling event, readers will witness Perry reckon with “disease as disability” and “disability as identity.” In this way, disability informs Perry’s reading of her own body, relationships with others, and institutions which threaten and determine our survival. Perry writes, “I see differently, literally and figuratively, due to disability.”

A Dangerously High Threshold for Pain is an Audible exclusive audiobook and frustratingly, Audible does not make all its books accessible to deaf readers by providing transcripts. Despite this barrier, I recommend readers do whatever they must to access this monumental work.

*Crip Genealogies *edited by Mel Y. Chen, Alison Kafer, Eunjung Kim, and Julie Avril Minich

*Crip Genealogies *continues to guide my transformation toward crip politics and away from disability as an identity of representation. This anthology includes essays, interviews, and photographs from disability activists, scholars, and cultural workers across disciplines, identities, and geographic borders. This is where I first learned about access exceptionalism, defined as “the use of access as a tool of exerting whiteness and severing disability access from broader social justice.” (For example, closing voting locations only in majority Black districts with claims of inaccessibility.) It prepared me for Leah Lakshmi Piepzna-Samarasinha and Stacey Park Milbern’s discussion about crip doulaing, a term for the ways crip/disabled people support one another through all stages of disability. *Crip Genealogies *also examines disability through a geopolitical lens. Jasbir K. Puar names the United States as “one of the largest producers of mass disablement in the world.” Her crip theorization through the lens of carceral systems, the Global South, and the settler colonial occupation of Palestine will change everything you think you know about disability and what disability studies can do.

Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha

*Care Work *is a toolkit by disability activist and performance artist Leah Lakshmi Piepzna-Samarasinha. This is where I first learned about collective access, and the ways we are each responsible to make space for crip/disabled people in our communities—with or without institutional support. Piepzna-Samarasinha’s work is deeply intersectional, placing queer, trans, and people of color, at the center of disability and care. She begins the text by telling readers, “Writing from bed is a time-honored disabled way of being an activist and cultural worker.” A book that begins with such care for its author, readers, and community will teach you new ways to care for yourself.

Easy Beauty by Chloé Cooper Jones

This gripping memoir from philosopher and two-time Pulitzer finalist Chloé Cooper Jones is part travelogue, part philosophical text, and part search for beauty anywhere and everywhere: a Beyonce concert in Milan; a tennis tournament in Palm Springs; a bar in Brooklyn. Cooper Jones reckons with chronic physical pain, as well as the pain of navigating a society that dismisses visible illness, disability and difference as “less than”—less capable, less worthy, and less beautiful. Not one page in my copy of *Easy Beauty *is without marginal notes or lines and lines of yellow highlight. In one well-marked section, Cooper Jones discusses the beauty and value we are told broken Greek statues possess, despite disfigurement. She contrasts that to the ire hurled at Marc Quinn’s *Alison Lapper Pregnant, *a 12 foot marble, naked and pregnant figure of Alison Lapper, an artist who was born without arms and shortened legs. Cooper Jones reminds us: “ . . . Quinn’s sculptures are not of broken forms, but of whole forms, whole people, complete bodies.”

Intemperance by Sonora Jha

Sonora Jha’s novel follows an unnamed narrator and her decision to celebrate her 55th birthday by hosting a swayamvar, a traditional Indian custom where suitors compete for a woman’s hand in marriage. Despite others’ opinions, and even her own doubts, this twice-divorced, deliciously self-possessed academic remains unafraid to want what she wants. Yet, when the swayamvar goes viral, the narrator’s desirability—as a feminist, as a disabled woman, as a menopausal woman, as a woman period—is rebuked. While *Intemperance *is not “about” disability, the fact of the narrator’s disability is inextricable from how she is perceived. She survived polio as a child and a devastating car crash, and walks intermittently using a cane. The narrator defends her desires by acknowledging the very real possibility she may rely on a wheelchair, sooner than later: “ . . . would it be so wrong to want a man who might be able to carry me around?” There’s something deeply feminist about a woman seeking a partner for their caregiving potential—a role typically assigned to women by the men, children, and parents in her life.

*What My Bones Know: A Memoir of Healing from Complex Trauma *by Stephanie Foo

*What My Bones Know *by journalist Stephanie Foo is as well-researched as it is deeply personal. Foo opens with a brief author’s note, promising readers, “This book has a happy ending.” I relied heavily on Foo’s assurance as she recounts years of brutal physical and emotional abuse and parental abandonment that left Foo living alone during her teenage years. In early adulthood, Foo is diagnosed with complex PTSD, as a result of chronic trauma. Complex PTSD is scarcely researched, which sets Foo on a learning journey. In partnership with a trusted health provider, she dissects recorded transcripts of her therapy sessions, allowing readers to witness Foo’s arduous process of healing (and perhaps their own).

I’m Telling the Truth, but I’m Lying by Bassey Ikpi

Bassey Ikpi’s memoir-in-essays was the first book I purchased about disability after surgery. Though it took another year until I felt ready to actually read it, I could not stop once I began. Ikpi, a poet and performance artist, navigates bipolar II disorder and anxiety. Her frustrations with the healthcare system felt resonant, and her gripping prose takes readers inside the day-to-day, minute-to-minute experience of what happens when your mind and body behaves in unexpected and inconvenient ways. Even though our experiences were not the same, I left Ikpi’s memoir empowered with new language and urgency to define my own experiences for myself.

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