Voice to Books: Disability in Full View
According to the CDC, one in four people in the United States live with some type of disability, whether visible or less apparent. Without respectful discussion and proper representation in the media, those living with disabilities are often stereotyped and misrepresented. This is also true for people who don’t always consider themselves disabled, such as Deaf and Blind folk. This month’s Voice to Books highlights these voices, because no one is able to express their stories, which are found in every community and culture, better than they do.
Ellen Outside the Lines, by A. J. SassReviewed
by Alexandra S. Neumeister
Ellen Outside the Lines is the story of Ellen, a girl on the autism spectrum living in Georgia. Ellen takes comfort in carefully planning her school trip to Barcelona, but when the previous year’s schedule is replaced with a scavenger hunt, the discomfort and panic she feels is palpable and all too familiar to people on the spectrum who struggle with sudden changes.
Ellen often responds to the way others react to her disability by changing her behavior, and throughout the narrative, she must deal with the consequences of her decisions. She freezes up in fear of judgment for simple actions, like putting on noise-canceling headphones, and sometimes her fears are well-founded. However, the narrative also celebrates her ability to adapt. The nonbinary character, Isa, is not referred to by any personal pronouns until they provide the option themself, and though Ellen is surprised at first, she quickly adjusts and becomes comfortable with the change, growing closer to her new classmate.
The autistic way of experiencing the world is expertly woven into the narrative. Tactile details are provided just as much as visuals when describing the cityscape of Barcelona, and Ellen often focuses on what people do with their hands rather than their faces. When Ellen is experiencing a sensory meltdown, the formatting shifts into unnatural-looking staggered lines, showing how out of place Ellen feels in the stressful moment.
In a refreshing change of pace from the way neurodivergent people are often treated in pop culture, Ellen is loved and supported at the same time that she is challenged by the people in her life. Ellen Outside the Lines doesn’t shy away from the obstacles experienced by people on the spectrum, while still celebrating the unique perspective that neurodivergence provides.
The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me, by Keah Brown
Reviewed by Yennie Cheung
Journalist Keah Brown’s debut essay collection is an unusual opportunity to watch an author develop technically over the course of one work. The creator of the hashtag #DisabledandCute, Brown frequently utilizes a fun, conversational tone, and pop culture references in part to subvert negative stereotypes of disabled people through expressions of confidence, optimism, and joy. At times, she executes this poorly, focusing so much on pop culture that it overwhelms the narrative and obstructs her complexity, especially when she forgets to stop fangirling and breaks basic rules of memoir by briefly referencing but not excavating formative memories, especially those where she played the antagonist.
When Brown does finally focus on the personal, though, she bares her soul poignantly, revealing unconventional perspectives on everyday moments and universal desires. In one essay, her laments on how cerebral palsy affects her love life create a deeply relatable juxtaposition between modern feminist pragmatism and basic cravings for intimacy. In another, a years-long external goal to fasten her own ponytails strengthens her internal sense of self as a disabled Black woman. And in successful convergences of pop culture and the personal, her loves of TV and fashion segue into explorations of how the common representation of the disabled as broken and traumatized can seem well-meaning but actually be myopic, bigoted, and hostile. In these moments, The Pretty One functions beautifully not only as an accessible primer on the intersectionality of disability, race, and gender but as a necessary reminder that joy and love are not exclusive to the able-bodied. The writing may be developing, but so, too, is Keah Brown, and she learns while simultaneously teaching readers that it’s in our lived experiences, not films or music, that we find our common humanity.
The Words in My Hands, by Asphyxia
Reviewed by Heather Scheeler
The Words in My Hands, by Deaf author Asphyxia, is at once a coming-of-age story, a call to action against corporations, propaganda, and censorship, an education in sustainable gardening, and a poignant look into the navigation of the hearing world by Deaf sixteen-year-old Piper McBride as she learns to accept her Deafness and to be fully herself. It is also a visually captivating book, Piper’s art intertwining with the text, every page exquisitely bordered with collage, sketches, and paintings so that the reader feels they are holding Piper’s own art journal.
Asphyxia pulls the reader into her novel with first-person narration to not only explain the ways in which society is ill-equipped to include the Deaf community but also to allow readers to experience some small amount of the disconnect and frustration Piper has been forced to cope with when her only options are lipreading and hearing aids. It isn’t until she meets Marley, whose mother is Deaf, that she is exposed to the joy and freedom of using sign language to communicate. Handwritten, red capital D’s change “deaf” to “Deaf” throughout the text to show Piper’s shift in understanding herself and the validity of the Deaf community, the art journal quality of the book seamlessly allowing for this unique form of storytelling.
For the hearing audience, this book is a call to take meaningful action towards creating a more inclusive world, meeting the Deaf community in the middle rather than expecting them to bear the burden of communication alone. For the Deaf audience, it is a witness to the varied struggles of loved ones hurting when they mean to help, strangers insulting when they mean to compliment, and the fear that exposing their Deafness could mean lessening their worth in the eyes of others.
Asphyxia has crafted a truly remarkable book that gives the reader so much more than an escape. It gives them an education, an experience of beauty, and a mission to change the world.
Disability Visibility: First-Person Stories from the Twenty-First Century, edited by Alice Wong
Reviewed by A.E. Santana
A collection of thirty-seven essays gathered into four parts, Disability Visibility highlights the lives of people—professors, lawyers, activists, artists—who tell their stories from places of love, joy, rage, anguish, warmth, and wholeheartedness. Like their authors, these pieces are individual; some pieces are traditional essays, some transcripts from speeches or podcasts or official statements. A eulogy is given. Poetry is utilized. In every piece, the words, phrases, and points of these writers are strongly written with firm and clear voices.
Disability Visibility is a beautifully written and eye-opening collection, particularly in regards to the scale of representation. Each section—“Being,” “Becoming,” “Doing,” and “Connecting”—guides the reader through the unique experiences of the authors, many of whom are part of a marginalized intersectionality, but all of whom are connected by their deft storytelling and love of community. A common thread found in each piece is the notion that disability, in any form, is not the hindrance in the lives of the writers; rather, any hindrance in their lives comes from the able-bodied and -minded society not paying attention, not caring. As Sandy Ho writes in her essay “Canfei to Canji,” “It is exhausting to still need permission to encompass all of myself.”
This book is for anyone. Anyone who is looking for familiar voices and shared experiences of living with a disability. Anyone, disabled or not, who is looking to gain a better understanding of experiences that vary from their own. Anyone searching for humanity, compassion, and community. Anyone with interests beyond themselves. Disability Visibility is for the reader, but more importantly, it is for the writers who own their lives with a joy and pride all can hope to emulate.
Voice to Books is a monthly short list of reviews from a variety of voices, curated by Daniela Z. Montes and A.E. Santana. Like the authors and their characters, each of our reviewers comes from a marginalized or underrepresented group. Interested in contributing a review to Voice to Books? Please send inquiries to firstname.lastname@example.org.