Summary of the book "Disability Visibility" - By Alice Wong

Key Concepts in this book:

1. The tales of disabled individuals are underrepresented in the mainstream media.
2. The lives of disabled individuals are perceived to be innately less important than those of others.
3. It can be damaging to insist that disabled persons look for a cure.
4. Custom-made clothing may honour the bodies of disabled and LGBTQ individuals.
5. Mental illness is romanticized as a facilitator of creativity, but it often causes restrictions.
6. The fight for racial justice must include disabled people.
7. Disabled persons can contribute drive global innovation with the correct support.
8. Indigenous peoples are victims of a healthcare system that is racist.
9. When intellectually handicapped persons live in communities rather than institutions, they thrive.
10. Crip spaces and care networks power disability justice movements.

Who can benefit the most from this book:

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

What am I getting out of it? Learn more about ableism and how to combat it in your community.

How does it feel to have a disability? The persons who recount the stories are as diverse as the answers to that question. There is no universal definition of disability, nor is there a common experience shared by people with disabilities. This is why it's surprising that disabled people are so underrepresented in the media.

Alice Wong has made it her life's work to make disability visible, as well as to draw attention to the systemic injustices that affect how handicapped people navigate the world. We've compiled a collection of articles by disabled activists, writers, artists, and philosophers that Wong gathered in order to shine new light on what it's like to be disabled in an ableist world in this summary.

• You'll learn how an astronomer found a way to listen to stars after losing her sight.
• Why racial justice campaigns must prioritize disability rights.
• And how to stop looking for a cure in this summary.

1. The tales of disabled individuals are underrepresented in the mainstream media.

Alice Wong didn't see anyone who looked like her on TV or in publications when she was a kid. A character with a disability would occasionally appear in a film, although he was almost always a man. And it's white. And his infirmity was frequently depicted as having wrecked his life.

Even today, more than 30 years after the Americans with Disabilities Act (ADA) made discrimination against people with disabilities unlawful, disabled people are underrepresented in the media, politics, and publishing.

In fact, according to a Lee and Low survey of the publishing sector conducted in 2019, only 11% of respondents identified themselves as disabled. That means that non-disabled individuals make the great majority of decisions regarding which experiences are worth conveying.

The major point here is that the tales of disabled persons are underrepresented in the mainstream media.

Alice Wong decided to take action to address the underrepresentation of disabled persons and their lives in the media. She'd make her own stories if she couldn't locate the ones she wanted. She started the Disability Visibility Project, or DVP, intending to create an ambitious oral history collection, teaming with Storycorps to collect 140 tales of disabled individuals in the run-up to the ADA's 25th anniversary.

She didn't stop there, either. The DVP has now gone on to employ every available medium to raise the visibility of disabled persons. It created the hashtag #CriptheVote, for example, and allowed disabled people to live-tweet the Democratic primary debate in 2016. This drew attention to handicap rights, which had been largely ignored in the political debate up to that time. By 2020, #CriptheVote had grown in popularity to the point where presidential contenders like Elizabeth Warren and Pete Buttigieg were holding Twitter town halls.

The importance of putting handicapped people's stories front and centre in the fight for equity and political representation cannot be overstated. But it's also significant because it allows for a more nuanced picture of the wide range of people with disabilities. It also allows disabled people to share their stories with one another, challenge stigma, and build their own narratives.

The Disability Visibility Project will continue to conduct this work through its oral history project, podcast, blog postings, anthology, and any other means accessible in the future, in the hopes that all children will be able to see representations of themselves in the world as they grow up.

2. The lives of disabled individuals are perceived to be innately less important than those of others.

Imagine having to spend the rest of your life persuading others that you are deserving of life — that your life is significant and meaningful. Harriet McBryde Johnson, a disability rights attorney, had to do this on a daily basis. She was crippled and relied on a motorised wheelchair to get around. She had been suffering from a muscle-wasting condition for more than 40 years and was exceedingly frail. Her spine was twisted into an S form, and she supported herself on her knees with her elbows. She was also entirely at ease in her own skin.

When other people looked at her, though, they didn't see her like that. People would stop her in public to tell her she was brave for leaving the house, or that if they were in her situation, they would want to kill themselves.

Here's the main point: The lives of disabled individuals are perceived to be innately less important than those of others.

They couldn't see how happy she was to be alive, how happy she was to be zooming along in her chair, feeling the cool breeze on her face. Instead, they observed someone who was disabled and believed that her life wasn't worth living because she was disabled.

They were unwittingly buying into a harmful prejudice that has become deeply embedded in our culture: that individuals with disabilities are less valuable than non-disabled persons.

Johnson was tired of trying to persuade these people that she was happy, that her life was full and – at least to her – valuable. As a result, she usually ignored the remarks. But she felt she had to fight back when she saw that a Princeton professor was promoting the same destructive beliefs that disabled people's lives are inferior.

Peter Singer, the professor, is a philosopher who formulated the so-called preference utilitarianism hypothesis. He claims that parents should be permitted to murder newborns with serious cognitive deficits because these babies have a lower probability of living a happy, healthy life than babies who do not have these concerns.

How can you have a peaceful discussion with someone who is effectively claiming that you should have been murdered at birth? When Johnson accepted Singer's invitation to debate him at Princeton, she put herself in that position. She warned him that his argument was defective at its core. He, like so many others, she claimed, believed that a person's condition affects the quality and outcome of their life. However, there is no solid data to back this up. The singer was mistaking his bias for evidence.

3. It can be damaging to insist that disabled persons look for a cure.

The cathedral was sweltering, and people were dancing and singing. June Eric-grandma Udorie's told her to soak her communion wafer in wine and cover her eyes with it. Her grandma assured her that if she prayed long enough and hard enough, God would restore her sight.

Eric-Udorie had always felt like a broken piece of equipment in need of repair for as long as she could remember. She was born with a disorder called nystagmus, which causes her vision to be blurry. Even though it is incurable, her family continues to pray for a miracle.

The main point is that insisting on finding a cure for disabled individuals can be damaging.

The miracle, however, did not occur. Eric-Udorie tried pleading with God to fix her, even if just for a short period, but He refused. She felt humiliated and as if she had betrayed her family. Her ailment had always been treated as if it were transient, but she knew it wasn't.

Liz Moore, a lady who suffers from chronic pain, came to the same conclusion. Moore tried reiki, neopagan rituals, medication, physical therapy, dieting, and a variety of other treatments to heal from fibromyalgia. People in their immediate environment argued that they should never acknowledge that they were incapacitated, that doing so would be akin to giving up. They hoped to be cured with enough work and optimistic thinking.

The search for a remedy, on the other hand, was unrelenting and all-consuming. Moore understood that in order to live their lives, they needed to embrace their bodies in their current state.

A similar conclusion was reached by Eric-Udorie. She chose to quit bargaining with God and embrace the humiliation and secret she'd grown up with, claiming her identity as a person with a vision impairment. She no longer felt confined by her condition, but rather liberated. Instead of pretending to be non-disabled, she began to learn to navigate the world on her own terms. She stopped apologizing when she missed a step or couldn't see a friend's mimed guidance. Her first solo trip to a cafe was both terrifying and exhilarating. She'd given up waiting and had begun to live.

4. Custom-made clothing may honour the bodies of disabled and LGBTQ individuals.

People with physiques that do not conform to the societal standard are advised to hide or integrate in order to appear "normal." Consider a woman who has had a mastectomy and has been advised to wear a prosthetic breast. Or transgender people who are instructed that in order to be accepted in society, they must "pass" as a given gender.

The attire provided for disabled and gender-nonconforming people reflects this urge toward conformity and blending in. The majority of disabled-specific apparel is tailored for folks who are seated. The designers don't appear to think of disabled people as people who want to dance, navigate a city, or attend a lecture. Most importantly, such attire isn't made for disabled individuals who want to stand out, be attractive, or be flashy.

The main point is this: Custom-made clothing may honour the bodies of disabled and LGBTQ individuals.

Sky Cubacub was no longer able to wear rigid clothes like jeans made for non-disabled individuals after developing a severe disease that prevented their stomachs from digesting meals properly. They began exploring suitable alternatives but were disappointed by the selection of apparel offered. It was tedious and appeared to be intended for the elderly or those confined to hospital beds.

For some years, Cubacub had been pondering their gender identification and had struggled to find any underwear that fit them. They realized that clothing that embraced all elements of people's bodies and identities, as well as how they wanted to express themselves in the world, was required. Rebirth Garments was born after they enrolled in a design class.

Rebirth Garments creates custom-fit clothing and accessories for persons of diverse sizes, abilities, and gender expressions. The clothing is made to be noticed. They're printed with geometric shapes in vivid hues. Instead of hiding the wearer's body, they show it off. Consider a jewelled colostomy bag and bright breast-binding underwear that can double as outerwear. For persons with sensory sensitivity, there are seductive, skin-tight plus-size dresses and apparel with seams on the exterior.

Rebirth organizes dance parties instead of typical fashion shows, where models are free to move about in whichever way feels good for their bodies while demonstrating how the apparel works.

Fashion is not a frivolous pursuit. It conveys a great deal about our place in the world. Rebirth challenges established beauty standards, making room for disabled and gay people to be seen on their own terms.

5. Mental illness is romanticized as a facilitator of creativity, but it often causes restrictions.

Artists such as Vincent Van Gogh are frequently highlighted as examples of creative geniuses whose agony enabled them to produce their masterpieces. Shoshana Kessock believed that her creativity as a writer was aided in part by the manic spells she experienced as a bipolar disease sufferer. She could write 12,000 words in a night and plot out a whole series of books when she was in the throes of madness.

Those bursts of production were snuffed out when she was initially diagnosed and saw a psychiatrist at the age of 16. He gave her so many different drugs that she became disoriented. She couldn't even feel her feelings, let alone produce art. Her memory was ruined, and she gained a lot of weight as a result of the drug. She even dropped out of high school when she was 17 years old.

Here's the main point: Mental illness is romanticized as a facilitator of creativity, but it often causes restrictions.

Kessock, understandably, determined that the cost of being medicated was too high. She went ten years without taking her medication and lived in a "tornado," as she describes it. She went through tremendous manic episodes in which she felt on top of the world and stayed awake for days, writing and playing games. She had the sensation of flying. However, these highs were followed by deep lows, with her unable to even get out of bed.

Grad school proved to be a game-changer for me. When a teacher criticized some of her artwork, she broke down and had a panic attack in the bathroom. As a result, she sought therapy at a mental health clinic just down the street. Her new doctor was well-versed in bipolar disorder and its treatment. He promised that he would work with her to find a prescription that would be effective for her.

Kessock felt like the whirlwind in her head had calmed down to a gentle breeze on the first day after starting her new medicine. She could still write, but she didn't have to wait for a manic episode; instead, she wrote calmly and deliberately, free of the highs and lows she'd experienced for so long.

Artists do not produce because they are suffering from mental illness. Despite their mental sickness, they produce. Van Gogh only sold one painting during his lifetime, not because his peers didn't like his art, but because he was too ill to interact with the rest of society. Consider what he could have accomplished if he had had access to assistance and support.

6. The fight for racial justice must include disabled people.

Darnell T. Wicker lived in Louisville, Kentucky, and was a deaf Black veteran. He was shot numerous times by cops one night, seconds after they'd given him a verbal warning that he couldn't hear or lip-read in the dark.

Sixty to eighty per cent of persons killed by cops are deaf or disabled. A disability affects more than half of all male inmates and 73% of female inmates. Because of structural racism, Black people are substantially overrepresented in these statistics. Activist groups like the Movement for Black Lives, on the other hand, neglect the experiences of disabled people in their advocacy.

The main point is that disabled people must play a significant role in the battle for racial justice.

In fact, the movement hardly acknowledged the presence of Deaf and disabled persons in its foundational manifesto, which was issued in 2016. It mentioned a desire to fight for the most marginalized members of society, such as queer people, but it didn't mention disability as a source of marginalization. Given that the majority of Black victims of police violence are Deaf or disabled, this is an odd omission. In fact, this is an erasure rather than an omission.

When Darnell Wicker was murdered, the fact that he was deaf was not brought up by those pushing for justice. Internalized ableism appears to exist within the movement, as well as a stigma attached to acknowledging disability and its role in the oppression of Black people. However, excluding disability from the discussion is damaging. The truth is that disabled individuals are twice as likely as non-disabled persons to be poor. When compared to other children, children with impairments are five to six times more likely to join the juvenile justice system. Any campaign against white supremacy will be ineffective unless it is accompanied by a fight against ableism. And any movement that recognizes the importance of intersectionality must prioritize the rights of disabled and Deaf people.

The Harriet Tubman Collective is a group of activists who fight for disabled and Deaf people to be included in racial justice movements. It pays tribute to the victims of police brutality and highlights their identities as disabled, Deaf, or neurodiverse persons. It maintains that the struggle for racial justice is always accompanied by a struggle for disability justice.

The lives of black people are important. The lives of black disabled people are important. Darnell T. Wicker's life is significant. Sandra Bland's life is significant. Eric Garner's life is significant. Likewise, the lives of all other disabled victims of police assault are in jeopardy.

7. Disabled persons can contribute drive global innovation with the correct support.

Wanda Daz-Merced, an astronomer, felt she'd lost her job when she lost her capacity to see. Daz-Merced looked at gamma-ray bursts in the sky, which are massive explosions that occur when stars run out of fuel and become supernovas.

The light emitted during gamma-ray bursts is used by astronomers to examine these events. They're visualized in the form of a graph. When Daz-Merced was blind, she lost access to that information. So, how would she be able to continue working as a scientist?

Rather than giving up, she and her team devised a method of converting the data to sound, with various volume levels and pitches reflecting different points on the graph. She devised a system that allowed her and other nonsighted astronomers to listen to the stars.

The main point here is that, with the correct support, disabled people can help drive global innovation.

Because of her condition, Daz-Merced was compelled to invent something that would make her entire career more accessible. But it didn't stop there. It also gave researchers a fresh source of information. The audio representations of the data revealed some previously unknown facts regarding gamma-ray bursts that were not obvious in the graphs.

Technology currently exists to assist persons with a variety of disabilities. We've modified cars to allow disabled people to drive on their own, and we've developed apps to help people with speech impairments interact with others. This technology is steadily improving in terms of accessibility and affordability. Siri, for example, has changed the lives of disabled persons with mobility challenges. Siri is software that responds to voice commands. Although the technology appears to be futuristic, it is currently found in many houses.

Yet, for people who aren't wealthy or don't have health insurance, access to assistance and housing is often severely limited. For example, lawyer Britney Wilson has detailed how difficult it is for her to commute to work in New York City via the paratransit system, which is used by disabled persons to get around the city and get to work. She frequently takes more than two hours to travel a few miles.

In every industry, disabled people are underrepresented. That won't change until a genuine commitment to ensuring equal access is made. Until that happens, we will all miss out on the benefits of workplace innovation, which range from making someone's journey more comfortable to hearing stars.

8. Indigenous peoples are victims of a healthcare system that is racist.

Jen Deerinwater's identity gets wiped clean the moment she enters a hospital and fills out an intake form. She is compelled to click a box saying that she is "American Indian," "Native American," or even "other."

She isn't, however, any of those things. She is a Cherokee Nation of Oklahoma citizen, one of America's hundreds of sovereign tribes. Being Native isn't a racial identity that can be categorized.

After filling out the form, Deerinwater is subjected to intrusive questions and a slew of racist microaggressions just to get treatment. She's reached the point where she needs to take anxiety medication just to get to an appointment.

Here's the main point: Indigenous peoples are victims of a discriminatory healthcare system.

Deerinwater's situation isn't uncommon. It's hard to comprehend the lives of chronically ill Indigenous people in the United States without first comprehending the racist colonial systems that have caused them to be so.

The Indian Health Service is a lifeline for indigenous people living on reservations (IHS). However, this institution has a history of abusing the people it is designed to help. In the 1970s, for example, between 25% and 50% of women treated in IHS facilities were sterilized against their consent.

In addition, the system is severely underfunded. In fact, convicts receive more than six times the amount of money allotted to health care as Indigenous people. Reproductive health care is scarce, and people must frequently travel hundreds of miles to reach the nearest clinic.

Indigenous people have a shorter life expectancy than inhabitants in Iraq, Sudan, or India, at only 66.8 years. The United States, they have the greatest rates of homicide, suicide, heart disease, diabetes, and drug misuse.

These issues can be traced back to colonialism. The Indigenous territory has been robbed and exploited as a dumping place for nuclear waste and other contaminants, which seep into the ground and cause a disease epidemic. Traditional foods can no longer be hunted or gathered by indigenous peoples. As a result, one-quarter of all Native Americans must rely on government food aid. However, the food served is of poor quality and harmful, contributing to heart disease, diabetes, and a variety of other ailments.

Because so many seniors are dying young, valuable intergenerational information is being lost, depriving entire communities of resources.

Deepwater is reminded of this past – and its erasure – every time she looks at a hospital admission paperwork. Rather than clenching her teeth and checking the boxes, she's begun to fight back. She is adamant about being properly identified and obtaining the medical attention she deserves.

9. When intellectually handicapped persons live in communities rather than institutions, they thrive.

Ricardo Thornton spent his youth and adolescence in facilities for individuals with intellectual disabilities, the majority of his time at Forest Haven, an infamous institution. Forest Haven served as a detention centre. Thornton had to follow the staff's orders at all times. He had no say in how he lived his life or the ability to make his own judgments.

Forest Haven was closed in 1991 because it was discovered that personnel were abusing the persons in their care regularly. However, segregation of people with intellectual disabilities continues. Over 92,000 people are housed in institutions today.

The main point is that intellectually challenged persons thrive in communities rather than institutions.

Thornton was fortunate to be able to escape Forest Haven while still in his early twenties. He relocated to a group home and acclimated to communal life. He had more freedom in the group home. He fell in love with a woman named Donna, who had also survived Forest Haven, and when she proposed, they were able to marry and move in together.

When Donna and Ricardo resided in Forest Haven, no one could have predicted their lives. They've spent decades in the public sector, raised a kid, and grown into formidable advocates for other disabled people in institutions.

Ricardo, on the other hand, flatly denies that they are special or extraordinary in any way, or that they are any different from other people with intellectual limitations. He claims that the only thing that set them apart was that they were given support and opportunities that they would not have had at a facility like Forest Haven, where they were viewed as absolutely helpless and had to rely on the personnel for everything.

Ricardo believes that with the correct support, anyone can live in a community. Medicaid, which provides personal care, nursing, and transportation services, should cover this. People should also be able to form their own support networks with other activists, family members, or faith communities.

Most importantly, people must have the freedom to make their own decisions and have as much control over their life as possible.

10. Crip spaces and care networks power disability justice movements.

Dancers Alice Sheppard and Laurel Lawson roll out onto the stage as the lights dim in the sombre theatre, weaving stunning dances to music with lighting and projections.

This isn't your typical show. The majority of the persons in the crowd are disabled. It’s a crip space, a space created for individuals in power chairs, people with canes, people who are Deaf, and people who are blind. Non-disabled people feel out of place in this arena, especially bipedal people who realize their bodies could never perform the same moves as the dancers on stage.

The main point here is that crip places and care networks are essential for disability justice movements to succeed.

Disabled persons rarely get opportunities to meet in a social setting rather than a medical facility or a hospital waiting room. In reality, crip spaces, or social gatherings for disabled persons, pose a hazard to non-disabled individuals. Why would disabled people want to divide themselves like that? they question. Disability is perceived by the nondisabled as something terrible and undesirable. As a result, disabled persons should concentrate on assimilating into abled society, according to reasoning.

However, it is precisely ableist environments that make being disabled so difficultly. Rooms without ramps, meetings without sign language interpreters, and concerts where everyone is expected to stand - handicapped people are constantly compelled to contort themselves to fit into those places, wasting tremendous amounts of energy that might and should be utilized for other purposes. Things like going to a dancing performance, eating some delicious meal, or having a discussion with someone you don't have to explain your life to.

Discrimination against people with disabilities is fought through disability justice. But, more importantly, it's about establishing care networks. It's about creating spaces for disabled people to get together and support one another, as well as meal trains for those who are hungry and emotional support for those who are struggling. It's about replacing the ableist concept of independence with interdependence.

Recognizing the intersections in our challenges is also a part of disability justice. For example, during the 2018 wildfires in Oakland, disability rights organizations were on the front lines of the fight against air pollution, distributing 80,000 masks. They've also been vocal in their opposition to the detention of immigrants in ICE detention centres, many of whom are disabled and neurodivergent.

Non-disabled people may not notice disability justice networks, yet they're always there, forming interconnected, resilient communities that are imagining radical futures of care.

The fundamental message in this summary is: Creating visibility for disabled people requires making space to examine the immense variation and complexity in disabled people’s stories. We can't comprehend what it's like to live with a disability without also comprehending ableism and racism, and how these affect how handicapped people are allowed to move around in the world. Disability rights movements provide essential respite and community-building opportunities.

Here are some suggestions you can put into practice:

Make your own network of caregivers.

We are all interconnected, which means we rely on one another. However, the capitalist idea that we should all be entirely self-sufficient is still alive and well today. Consider how you can assist those around you with things that are difficult for them, and practice asking for assistance yourself. It may seem intimidating at first, but it will enable you to form more vulnerable and honest friendships, as well as educate others that they can rely on you.