As I’ve recently discovered, July is Disability Pride Month. At the end of June, I finished a collection of essays entitled Disability Visibility: First-Person Stories From the Twenty-First Century edited by Alice Wong, and having been quite moved by these articles, I would like to highlight some of the voices and encourage you to pick it up as well.
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.Alice Wong, page xv
With this sentence, Alice Wong begins her introduction to the essays within Disability Visibility. Discussing the dearth of disabled representation in media and accessible transportation in the suburbs, Wong explains how she began collecting stories about disability that spoke to her, and how through her collection, she acquainted with the disability community. When in 2014 the Americans with Disabilities Act was approaching its 25th anniversary, Wong wanted to commemorate this occasion; thus, she worked with StoryCorps to create the Disability Visibility Project and record oral histories which would be saved at the Library of Congress. While it was originally intended as a one-time collaboration, the project was incredibly successful and has continued to collect stories from disabled voices.
In her own words, “[This book] is not Disability 101 or a definitive ‘best of’ list… These stories do not seek to explain the meaning of disability or to inspire or elicit empathy. Rather, they show disabled people simply being in our own words, by our own accounts” (page xx). Because of this, Disability Visibility is all the more powerful.
Disabled people have always existed, whether the word disability is used or not. To me, disability is not a monolith, nor is it a clear-cut binary of disabled and nondisabled. Disability is mutable and ever-evolving. Disability is both apparent and nonapparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride.Alice Wong, page xxii
Disability Visibility is an indispensable compilation of voices and its importance in the publishing world cannot be understated. Its integral contribution should be considered required reading, as it is unapologetic and empowering in scope. There were far more essays in this book than I expected, and I felt bolstered by my reading experience. I highly recommend this book to everyone, as it is one I will be thinking about and recommending for decades to come.
Now, I going to discuss just a few of the essays which appear in this collection:
The Erasure of Indigenous People in Chronic Illness by Jen Deerinwater
Have you ever noticed that, on medical forms, there is often only “American Indian” or “Other” listed for Indigenous options? Jen Deerinwater expresses her frustration with this terminology. “Native people are often asked to define ourselves with these white supremacist, settler-created racial categories like ‘American Indian'” (page 47). Jen is not “American Indian.” She is Tsalagi. She is a citizen of the Cherokee Nation of Oklahoma. But instead, she must minimize her heritage and check “American Indian.” “We’ve been turned into ‘Americans’ to justify the theft of our lands and resources, and continuing to call us ‘Indian’ reinforces the idea that we are loinclothed savages whom Columbus ‘discovered'” (page 47).
The inaccurate paperwork is just the beginning though, as these forms may be indicative of the lack of care she may receive at medical facilities. Listing various insensitive comments and even blatant malice she has received from medical workers, Jen argues that this sort of discriminatory treatment is contributing to widespread health problems in the Indigenous communities. And when Indigenous disabled persons must rely on medical assistance for the care they need, this can lead to traumatic experiences and even premature death.
“The only healthcare available to Native people living on reservations is provided by the Indian Health Services (IHS)… that’s consistently rated as the worst healthcare provider in America. IHS is also grossly underfunded,” Jen explains (page 49). On top of this lack of medical resources, Indigenous people often have the lowest life expectancy and significant health problems due to lack of food, contaminated water, and little to no medical resources. “Approximately 84 percent of Native women are abused in our lifetimes. More than 50 percent of us have been raped at least once. On some reservations, Native women are murdered at ten times the national homicide rate. Despite this, it’s nearly impossible to access an abortion or healthcare after a sexual assault,” explains Jen (page 49). In addition to this, Native people also have the highest rates of suicide, diabetes, autoimmune diseases, heart disease, murder, and alcohol and drug abuse (page 50). This is not just an isolated occurrence; this is systemic sabotage and neglect.
Many of these health issues are a direct result of colonialism. Our lands and waters have been polluted due to resource extraction, toxic dumping, and nuclear testing.Jen Deerinwater, page 50
But Jen says she is choosing to fight, by meeting with administrators of the George Washington Memorial Hospital about their staff’s gross discrimination against Jen and Native prejudice, and by writing powerful essays which announce the ways in which Indigenous people have been harmed and ignored by the American government. So that one day, the Native people who live on despite this brutalizing system may lead better lives with more access to care in the future. This was an incredible essay, and I encourage you to read Jen’s essay for the full piece.
The Isolation of Being Deaf in Prison by Jeremy Woody, as told to Christie Thompson
In 2013, Jeremy lived in a Georgia state prison and was interested in attending a class called Motivation for Change. When he arrived at the class, everybody around the room introduced themselves aloud; Jeremy, being deaf, wrote his name on a piece of paper and asked someone else to say it aloud for him. The instructor, previously unaware that Jeremy was deaf, asked Jeremy to leave, and after a few moments, she came out to inform him that he could not attend the class. After this, Jeremy asked around among other deaf imprisoned people and they all expressed having similar experiences: they were all denied access to the classes the other inmates were allowed to attend.
While I was in prison they had no American Sign Language (ASL) interpreters. None of the staff knew sign language, not the doctors or the nurses, the mental health department, the administration, the chaplain, the mailroom. Nobody. In the barbershop, in the chow hall, I couldn’t communicate with the other inmates. When I was assaulted, I couldn’t use the phone to call the Prison Rape Elimination Act hotline to report what happened.Jeremy Woody, page 60
Although there were other deaf inmates, Jeremy was roomed apart from them. He writes that he wishes he was able to form a group with them and communicate amongst themselves, but often he was instead housed with blind inmates, which made communication between them practically impossible.
Even at doctors’ appointments, when communication between patient and doctor is crucial, Jeremy was denied an interpreter; he was told he’d have to write messages back and forth. “When I encounter a new person, I can’t really read their lips. And I don’t have a high literacy level, so it’s pretty difficult for me to write in English. I mean, my language is ASL. That’s how I communicate on a daily basis,” Jeremy writes (page 60). Frustrated, Jeremy stopped going to the doctor at all.
Prison is already an isolating, dehumanizing, terrifying experience. Jeremy’s essay speaks to the added oppression of being a deaf person in prison and the lack of accessibility and resources for these individuals. His essay is telling of our systemic failure to aid prisoners in need, and I highly recommend reading this piece as he’s told in his own words.
Imposter Syndrome and Parenting with a Disability by Jessica Slice
Jessica Slice is the mother to her beloved son, Khalil. But in this essay, the confesses that sometimes she doesn’t feel like a mother. “When people talk about parenting–the long nights pacing with a crying baby, the carpool slog, potty training–I can chime in, but a part of me feels like an imposter” (page 129). As Jessica explains, that’s because she has Ehlers-Danlos syndrome, a genetic condition which affects connective tissues, such as the skin, joints, and blood vessel walls. This means she can walk for short distances, but her “ability to be upright is unpredictable” (page 129). Thus, her physical condition prevents her from participating in the full range of what’s considered “typical” parenting.
He is a particularly enthusiastic toddler, his body acting out every passing emotion. Once he’s bucking around, my husband, David, has to intervene–I’m too fragile to manage thirty-one pounds of pure kinetic energy.Jessica Slice, page 130
Because Jessica can’t endure the physical demands of “real” parenting, she often harbors feelings of guilt.
Internalized ableism–the insidious belief that I would be a better person if I were not disabled–makes me feel like an imposter as a mother.Jessica Slice, page 130
Although Jessica is limited in what her body can do due to her disability, she and her husband have found ways to make their family work. While her motherhood is “unconventional,” it is just as valid. While she can’t carry Khalil around on her hip, he can ride on her lap in her power chair around town, him snuggling into her as they travel in arguably a cooler way than walking.
Fortunately, love isn’t a collection of capabilities, of practical contributions. My love isn’t diminished by my inability to carry my son up the stairs, just as it isn’t diminished by the fact that I didn’t carry him inside my uterus… Parenting is a series of phases; as we both grow and change, there will be new intersections between the needs of his body and the needs of mine.Jessica Slice, page 131-132
As technology continues to habilitate and connect, and as their love expands bigger than they thought possible, Jessica and her family will continue to challenge the ways in which we view “parenthood” by showing up for her son in creative and loving ways. If you are interested in reading more, I highly recommend Jessica’s essay in Disability Visibility.
I hope my brief summarization of a few of the essays have served to enlighten and pique your interest in this Disability Visibility compendium. Their words are far more impactful than my third-person overview, and delve into much more detail. One of the ideas that stuck out to me in this book is that Anyone can become disabled at any time. And while we should recognize the humanity of and assert a more accessible world for disabled individuals without having to selfishly wonder how accessibility could potentially serve us at some point, it is jarring to realize how often ill-equipped our society is in accommodating and respecting special needs.
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