Disability Visibility Buchzusammenfassung - das Wichtigste aus Disability Visibility

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Zusammenfassung von Disability Visibility

Name: Disability Visibility
Rating: 4.1 (81 reviews)
Author: Alice Wong

Alice Wong

First-Person Stories from the Twenty-First Century

4.1 (81 Bewertungen)

34 Min.

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Diversität & Inklusion Die Medien Alternative Perspektiven Inspiration

Inhaltsübersicht

Disability Visibility
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What’s in it for me? Learn about ableism and how to challenge it in your communities.

What’s it like to live with a disability? The answers to that question are as diverse as the people telling the stories. There’s no one definition of disability, and no unifying experience that people with disabilities go through. Which is why it’s strange that the representation of disabled people in the media is so limited.

Alice Wong has dedicated her career to making disability visible – and to calling attention to the structural inequalities that affect how disabled people move through the world. In these blinks, we’ve synthesized a selection of essays by disabled activists, writers, artists, and thinkers that Wong curated to shed new light on what it’s like to be disabled in an ableist world.

In these blinks, you’ll learn

how an astrophysicist found a way to listen to stars after losing her sight;
why struggles for racial justice need to foreground disability rights; and
how to stop searching for a cure.

Disabled people’s stories are underrepresented in mainstream media.

When she was growing up, Alice Wong didn’t see anyone who looked like her on TV or in magazines. Occasionally a character with a disability would be featured in a movie, but that character was invariably male. And white. And, often, his disability was portrayed as having ruined his life.

Even today, more than 30 years since the Americans with Disabilities Act – or the ADA – made it illegal to discriminate against people with disabilities, there’s still little representation of disabled people in the media, politics, and publishing.

In fact, a 2019 Lee and Low survey of the publishing industry revealed that only 11 percent of respondents described themselves as having a disability. That means that the vast majority of people making decisions about which stories are worth telling are nondisabled.

The key message here is: Disabled people’s stories are underrepresented in mainstream media.

Alice Wong decided to do something about this lack of representation of disabled people and their lives. If she couldn’t find the stories she craved, she’d produce some herself. She founded the Disability Visibility Project – or DVP – and set out to create an ambitious oral history archive, partnering with Storycorps to collect 140 stories of disabled people leading up to the 25th anniversary of the ADA.

And she didn’t stop there. The DVP has gone on to use every possible medium to increase disabled people’s visibility. For example, it coined the hashtag #CriptheVote, and invited disabled people to live-tweet the 2016 Democratic primary debate. This created a crucial focus on disability rights that had been largely absent in the political discourse up to that point. By 2020, #CriptheVote had become so influential that it was even hosting Twitter town halls with presidential candidates like Elizabeth Warren and Pete Buttigieg.

Foregrounding the stories of disabled people is essential to the battle for equity and political representation. But even more than that, it’s important because it allows for a nuanced representation of the huge spectrum of people who have disabilities. And it allows disabled people to share experiences with each other, interrogate stigma, and shape stories on their own terms.

The Disability Visibility Project continues to do this work through its oral history project, podcast, blog posts, anthology, and any other avenue that becomes available – in the hope that in the future, all children will be able to see representations of themselves in the world as they grow up.

Disabled people’s lives are seen as intrinsically less valuable than those of others.

Imagine having to spend your life convincing other people that you deserve to be alive – that your life is valuable and meaningful. That’s what disability rights lawyer Harriet McBryde Johnson had to do on a daily basis. She was disabled, and used a power wheelchair. She had a muscle-wasting disease for over 40 years, and was extremely thin. Her spine was twisted into an S-shape, and she held herself up by resting her elbows on her knees. She was also completely comfortable in her body.

But that’s not what other people saw when they looked at her. When she was out in public, people would stop her to tell her that she was brave for leaving the house, or that if they were in her position, they’d want to kill themselves.

Insisting that disabled people need to search for a cure can be harmful.

The church was hot and filled with people dancing and singing. June Eric-Udorie’s grandmother instructed her to soak her communion wafer in wine and place it over her eyes. Her grandmother told her that if she prayed hard enough, God would restore her sight.

For as long as she could remember, Eric-Udorie had felt like she was a broken piece of machinery waiting to be fixed. She was born with an eye condition called nystagmus that gives her reduced vision. It’s incurable, but that didn’t stop her family from praying for a miracle.

Custom-made clothing can celebrate disabled and queer people’s bodies.

People who have bodies that don’t conform to the cultural norm are told that they should try to hide or assimilate in order to look “normal.” Think of the woman who has had a mastectomy who’s told she should wear a prosthetic breast. Or transgender people who are told they need to “pass” as a certain gender to be accepted in society.

This push toward conformity and blending in is reflected in the clothing that’s available for disabled and gender-nonconforming people. Most clothing made specifically for disabled people is designed for those who are stationary. The designers don’t seem to conceive of the disabled as people who might want to dance, or navigate a city, or go to a lecture. Most of all, such clothing isn’t designed for disabled people who want to be striking, beautiful, or flamboyant.

Mental illness is mythologized as aiding creativity, but it creates barriers, too.

Artists like Vincent Van Gogh are always cited as examples of creative geniuses whose anguish made their work possible. Shoshana Kessock felt, too, that her creativity as a writer was made possible in part because of the manic spells she experienced as someone with bipolar disorder. When she was in the grip of mania, she could write 12,000 words in a night, and map out a whole series of books.

But when she was first diagnosed and went to a psychiatrist at the age of 16, those spells of wild productivity were snuffed out. He prescribed her so many different medications that she walked around in a haze. She could barely feel her emotions, never mind create art. The medication destroyed her memory and caused her to gain a lot of weight. She even dropped out of high school at age 17.

Disabled people need to be central to the fight for racial justice.

Darnell T. Wicker was a deaf Black veteran living in Louisville, Kentucky. One night he was shot multiple times by police seconds after they’d issued a verbal warning – a warning that he couldn’t hear, or lip-read in the dark.

Sixty to 80 percent of people who are murdered by police are Deaf or disabled. Over half of all male prisoners and 73 percent of female prisoners have a disability. Structural racism means that Black people are vastly overrepresented in these numbers. And yet, activist organizations like the Movement for Black Lives ignore the experiences of disabled people in their activism.

With the right support, disabled people can help drive innovation in the world.

When the astronomer Wanda Díaz-Merced lost her ability to see, she thought she’d lost her career as well. Díaz-Merced studied gamma-ray bursts in the sky, intense explosions that happen when stars reach the end of their fuel and become supernovas.

Astronomers study these events by looking at the light that’s emitted during gamma-ray bursts. They’re represented visually in a kind of graph. When Díaz-Merced became blind, she was no longer able to access that data. So how could she continue her work as a scientist?

Indigenous people are victims of a racist health-care system.

Jen Deerinwater’s identity is erased as soon as she steps into a hospital and has to fill out an intake form. There, she’s forced to check a box indicating she’s “American Indian” or “Native American” or even just “other.”

But she’s not any of those things. She’s a citizen of the Cherokee Nation of Oklahoma, one of hundreds of autonomous nations in America. Being Native isn’t a racial identity that can fit in a box on a form.

Intellectually disabled people thrive when living in communities instead of institutions.

Ricardo Thornton spent his childhood and teenage years in institutions for people with intellectual disabilities, spending most of his time at a notorious institute called Forest Haven. Forest Haven was a kind of holding cell. Thornton had to obey the instructions of the staff at all times. He had no room to make his own decisions or have a say in how he lived his life.

Forest Haven was closed in 1991 after it was revealed that staff were routinely abusive to the people in their care. But the practice of segregating people with intellectual disabilities persists. Today, over 92,000 people live in institutions.

Crip spaces and care networks power disability justice movements.

The lights dim in the hushed theater, and dancers Alice Sheppard and Laurel Lawson roll out onto the stage, weaving beautiful dances to music with lighting and projections.

This is no ordinary show. The audience is made up mainly of disabled people. It’s a crip space, a space designed for people in power chairs, people with canes, people who are Deaf, and people who are blind. In this space, it’s the nondisabled people who feel out of place – the bipedal people who come to see that their bodies could never accomplish the same kinds of movements as the dancers on stage.

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Worum geht es in Disability Visibility?

Disability Visibility (2020) is a compilation of original essays by people with disabilities. There are too few stories about what it’s like to be a disabled person navigating environments designed for the nondisabled. This collection brings visibility to some of these diverse experiences, and shows how limiting our ideas about disability really are.

Wer Disability Visibility lesen sollte

Disabled people looking for stories that represent diverse experiences of living with disabilities
Nondisabled people interested in confronting their prejudices about what it means to be disabled
Activists wanting to strengthen their movements by making them more intersectional

Über den Autor

Alice Wong is a disabled activist, media maker, and research consultant. She’s the founder and director of the Disability Visibility Project and coproducer of the Disability Visibility podcast. From 2013 to 2015, she served on the National Council on Disability, an appointment by President Barack Obama.

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