Disability Visibility Book Summary By Alice Wong

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Disability Visibility (2020) is an essential collection of essays, stories and experiences from those living with disabilities.

Through these voices, we are able to gain a better understanding and appreciation for the struggles associated with navigating a world that is often not designed for disabled people.

From entering the workforce to managing personal relationships, the book offers insight into new ways of thinking about disability and how to make our environment more accessible.

Personal perspectives provide valuable lessons on what it takes to live each day without regret or apology at being different.

Disability Visibility encourages us to discover our individuality while cultivating an acceptance of others who may be different or have unique needs than ours.

Disability Visibility Book

Book Name: Disability Visibility (First-Person Stories from the Twenty-First Century)

Author(s): Alice Wong

Rating: 4.1/5

Reading Time: 34 Minutes

Categories: Motivation & Inspiration

Author Bio

Alice Wong is an accomplished disabled activist, media creator, and consultant.

She's the founding force behind the Disability Visibility Project and co-producer of the Disability Visibility podcast.

During President Barack Obama's time in office, she was appointed to serve on the National Council on Disability from 2013 to 2015.

Alice Wong is a highly respected figure in the disability community for her work towards disability rights and her effort to make sure disability stories are shared widely with the world.

She has dedicated her career to making sure that voices of those living with disabilities are not just heard but amplified to bring about change.

How The Disabled Experience Life In An Ableist World

Experience Life

Alice Wong’s Disability Visibility: First-Person Stories from the 21st Century is an invaluable tool for understanding ableism and how to challenge it in your communities.

This book compiles essays by disabled activists, writers, artists and thinkers and provides crucial insight into how people with disabilities live in a society that often overlooks and ignores them.

The anthology encourages readers to consider the structural inequalities facing disabled individuals and the lack of representation of disabled people in popular media.

Essays include topics such as how an astrophysicist found her way to listen to stars after losing here sight, why racial justice needs to acknowledge disability rights, and exploring what a cure really means for those with disabilities.

Through these stories of strength and resilience comes a greater understanding of ableism – what it is at its root, why it persists, and how you can actively counter it within your own circle to create more visible support for disabled people.

Disability Visibility Project Seeks To Change The Narratives Surrounding Disability

Disabled people’s stories are often overshadowed by nondisabled representations in media, politics, and publishing.

A 2019 Lee and Low survey of the publishing industry revealed that only 11 percent of respondents had disabilities, which means that there is a large gap in representation when it comes to disabled narratives being featured in the media.

In response to this lack of visibility, Alice Wong founded the Disability Visibility Project (DVP), an ambitious oral history archive dedicated to collecting stories of disabled folks leading up to the 25th anniversary of the Americans with Disabilities Act (ADA).

Additionally, DVP created #CriptheVote, a hashtag for live-tweeting about disability rights during the 2016 Democratic primary debates.

This hashtag was so successful that by 2020 presidential candidates like Elizabeth Warren and Pete Buttigieg were hosting Twitter townhalls through #CriptheVote.

The mission of Disability Visibility Project is to give disabled people narrative control over their own stories.

By bringing forth disabled perspectives through its oral history project, podcasts, blog posts, anthology and other outlets – Disability Visibility Project hopes that future generations will witness more life-affirming representations in media rather than one-dimensional portraits characterized within stereotypes or inaccurate depictions.

Harriet Mcbryde Johnson Challenges The Stereotype That Disabled People’S Lives Are Less Valuable

Throughout her life, Harriet McBryde Johnson was met with cruel assumptions unknown to those without disabilities.

She had a muscle-wasting disease and spent the vast majority of her days in a power wheelchair.

When out in public, she would be approached by strangers – strangers who didn’t realize the beauty or complexity of her life – and informed that she must have a horrible existence if she is disabled and using a wheelchair.

They didn’t acknowledge that she was completely comfortable in her body.

This attitude reflects what has been ingrained into our society: that the lives of disabled people are somehow less valuable than those of nondisabled people.

Johnson grew tired of constantly trying to prove they were wrong – so mostly she ignored these comments.

But when confronted with Princeton professor Peter Singer’s toxic arguments – which essentially offered permission for parents to kill their disabled babies because they were seen as having ‘less chance of good life’ – she knew it was time to take action.

Johnson discussed this incredibly important topic with Professor Singer, challenging his flawed assumptions about disability being capable of defining the quality and outcome of someone’s life.

Social prejudice is certainly not proper evidence, nor an acceptable rationalisation for possibly immoral behaviour.

She asserted – as so many others have – that people need to be aware that basing judgements off social stigmas does nothing but harm individuals who are different than them at the biological level or through societal choice or force.

Disabled people’s lives are no less valuable than those of nondisabled people – value is intrinsic regardless of any differences we may possess!

Stop Searching For A ‘Cure’ And Start Accepting Yourself As You Are

Accepting Yourself

June Eric-Udorie’s search for a miracle to cure her nystagmus, an incurable eye condition, ended with disappointment.

Despite prayers from her family and church members, God didn’t oblige.

Liz Moore experienced a similar situation while attempting to cure their chronic pain through various treatments and therapies.

It’s easy to feel trapped by these conditions, especially if those around you are insisting on finding a cure with enough effort and positivity.

However, these methods can be harmful as they place pressure on those affected by disability and illness to find something that may not even exist.

By understanding how beneficial it is to accept their body – exactly the way it is – Moore found peace with their role in the world and was able to live life without unexpectant hope of recovery; similarly, Eric-Udorie came to realize that she could navigate the world on her own terms instead of pretending to be nondisabled and without apology.

Making this realization allowed them both break from feeling trapped by their situations and start living again.

Rebirth Garments: Clothing Custom-Made To Celebrate Disabled And Queer Bodies

Custom-made clothing can be a powerful statement for disabled and queer people, who often feel like their bodies don’t conform to the cultural norm.

Sky Cubacub, creator of Rebirth Garments, experienced this first hand after developing a painful condition that stopped them from being able to wear stiff clothes like jeans.

They couldn’t find any undergarments that fit either, which drove home the realization of what was needed – clothing that celebrate all aspects of people’s bodies and identities, regardless of size, ability or gender expression.

Cubacub started designing garments that were custom-made to fit the wearer’s body and flaunted it rather than hiding it – like jeweled colostomy bags and colorful breast-binding underwear that can be worn as outerwear; or sexy, skin-tight plus-size dresses; or clothing with seams on the outside for people with sensory sensitivities.

Instead of traditional fashion shows, Rebirth Garments hosts dance parties where models are free to move around in whatever way feels good.

Rather than conforming to typical beauty standards, Reborn Garment’s custom clothing provides a platform of visibility for disabled and queer people to not only express themselves but also be embraced and celebrated by others.

Mental Illness Can Enhance Creativity – But Also Stifle It

It’s an alluring notion that mental illnesses may produce creative works, but Shoshana Kessock’s experience shows us that it is a myth and unduly romanticizes the struggles of living with these conditions.

When she was diagnosed at 16, she was so heavily medicated that she couldn’t feel her emotions – let alone create art.

Not only did her memory suffer, but also her schoolwork plummeted to the point that she had to drop out of high school.

Kessock understood this and went off medication for ten years after which her life became a “tornado”.

She experienced intense mania, characterized by wild productivity during periods where she could write 12,000 words in a night.

But those were followed by equally severe lows when she felt unable to even get out of bed.

Entering graduate school changed her outlook on the situation as a teacher critiquing her artwork resulted in her seeking help from a local clinic.

There, she found someone who actually knew about treating bipolar disorder and he helped put together a different/better regimen for her.

The impact of this was immediately seen; Kessock felt like the chaos in her head had died down to barely-audible whispers and still wrote without having wait for bouts high and low emotions like before.

Vincent Van Gogh didn’t have the same luck either; his work wasn’t appreciated because he was too sick to engage with people properly and not due to lack of talent or appreciation for it either.

What might have happened had he found help?

Black Lives Matter And Disabled Lives Matter: Erasing Disability From The Fight For Racial Justice Is Harmful


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

Too often, they are forgotten or ignored by mainstream activists and organizations advocating for racial justice.

This is a shame, because disabled people are disproportionately affected by racism and violence, yet their experiences are often overlooked or minimized.

For example, approximately 60-80% of people who are murdered by police officers have disabilities, and over half of all male prisoners and 73% of female prisoners have a disability.

Additionally, disabled individuals are twice as likely to live in poverty as non-disabled individuals and children with disabilities are 5–6 times as likely to enter the juvenile legal system compared to other children.

These facts showcase how important it is that disabled people’s voices be heard in the fight against white supremacy.

At the heart of that movement should be an understanding that fighting for racial justice means also fighting for disability justice; we must ensure that Black lives matter — including those which can sometimes be overlooked or unheard — and reclaim their right of visibility and power in society.

This is what groups like The Harriet Tubman Collective do; they raise awareness about this issue, honor victims of police brutality (like Darnell T.

Wicker) by acknowledging his identity both as a Black man and a Deaf man, challenge ableism within the movement itself, and insist on including disabled voices into conversations about intersectional oppression.

The time has come for us to recognize this important role too!

The Power Of Disability: How Accessibility Can Lead To Innovation And New Frontiers

When Wanda Díaz-Merced became blind, she thought that she had lost her career as an astronomer.

Astronomers study gamma-ray bursts by looking at the visual light they emit, which is displayed on a graph.

How could a blind woman access this data? Well, with the right support, disabled people can help create innovative solutions that make their field more accessible to everyone.

Díaz-Merced and her team used technology to convert the visual data of gamma-ray bursts into sound, allowing her to “listen” to the stars.This innovation not only opened up a whole new way for other nonsighted astronomers to access this data, but it also provided researchers with new knowledge about gamma-ray bursts that wasn’t visible in the graphs beforehand.

In addition to Díaz-Merced’s work as an astronomer, technological advancements have also drastically improved disabled people’s living conditions today.

We now have modified cars with ramps or lifts so people with physical impairments can drive independently or programs that allow those with speech difficulties to communicate better than ever before.

Indigenous People Are Victims Of A Racist Health Care System

Indigenous people in the United States are victims of systemic racism in the health-care system.

They are subjected to intrusive questions and racist microaggressions merely for accessing needed medical treatment, and have to take anxiety medication just to attend appointments.

The Indian Health Service (IHS) has historically been abusive to the Indigenous population it was meant to serve.

For example, during the 1970s between 25 and 50 percent of women treated in IHS facilities were sterilized against their will.

Furthermore, there is an extreme lack of funding for these services – in fact, prisoners receive more than six times as much money for healthcare than Indigenous people do.

Accessibility is also a major problem as many clinics are located hundreds of miles away from reservations so accessing reproductive health care is nearly nonexistent.

As a result of inadequate healthcare coverage and oppressive colonial systems, Indigenous people suffer from some of the highest rates of mental and physical illnesses in America: murder, suicide, heart disease, diabetes and drug abuse all remain disproportionately high among Native Americans due to environmental toxins that enter their land through unchecked means.

This further affects their communities as they no longer can hunt or gather traditional foods and must rely on government assistance with its poor quality food thus perpetuating the diseases they already experience at higher rates than other populations.

Additionally, vital intergenerational knowledge isn’t being passed down due to elders dying early due to poor health care access.

Ricardo Thornton: A Story Of Overcoming Institutionalization And Finding Autonomy In The Community

Ricardo Thornton

Intellectually disabled people can have a much better quality of life when they are living in communities, rather than in institutions like Forest Haven.

This is the key message from Ricardo Thornton’s book “Disability Visibility”.

At Forest Haven, Thornton did not have the autonomy to make his own decisions about how he lived his life.

He was instead completely subject to the instructions and rules of staff at all times.

Thornton experienced firsthand how people with intellectual disabilities thrive in communities after he moved away from Forest Haven and into a group home.

In the group home, he was able to marry Donna, who had also spent time living in the institution, and together they were able to raise their son.

According to Thornton, it wasn’t because they were special or exceptional; it’s because they receive supportive services such as Medicaid that would have been inaccessible while living in an institution.

They also formed supportive networks with other activists and church communities outside of their care facility.

The takeaway message is clear: Intellectually disabled people should be given as much autonomy over their lives as possible and given access to supportive services that enable them to live within a community rather than an institution or segregation setting.

Doing this will allow them to reach their fullest potential and lead fully fulfilling lives.

Disability Justice Is About Creating Networks Of Care And Intersectionality For Resilient Communities

In environments designed for the nondisabled, people with disabilities often have to expend vast amounts of primary energy just to function properly.

That’s where crip spaces come in.

These are social spaces created specifically to meet the needs and accommodate the differences of disabled people.

These crip spaces provide more than just a place for disabled individuals to congregate – they empower disability justice movements by supporting care networks that are invaluable to those who are underserved and discriminated against.

Through these networks, disabled individuals can rely on others within their community when they need assistance or emotional support.

By fostering connections between members of different identities and experiences, disability justice organizations also address issues that go beyond disability itself.

For instance, an organization might educate and advocate for air quality regulations in order to protect people with certain respiratory disabilities from environmental hazards such as air pollution.

Wrap Up

The final summary of Disability Visibility is simple: it’s important to create visibility for disabled people.

By acknowledging and understanding the complexities of ableism and racism, we can better understand what it’s like to be a part of the disabled community.

Disability justice movements are also essential in creating much-needed respite, community building, and care networks.

Furthermore, our interdependence means that we all need each other, so practice asking for help yourself and supporting others in tasks that may be difficult for them.

Doing this will help build stronger relationships as well as instill trust in each other.

Arturo Miller

Hi, I am Arturo Miller, the Chief Editor of this blog. I'm a passionate reader, learner and blogger. Motivated by the desire to help others reach their fullest potential, I draw from my own experiences and insights to curate blogs.

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