Quick Summary: In Disability Visibility, you’ll find out how a blind astrophysicist learned to “hear” the stars again, why the fight for racial equality must focus on the rights of people with disabilities, and why we should give up on finding a cure.
If you have a disability, how would you describe your daily life? The diversity of perspectives expressed in the various reports suggests that there is no single correct answer to this question.
No two people with disabilities have the same experiences, and there is no universal definition of disability. It is therefore strange that disabled people are rarely portrayed in the mainstream media.
Alice Wong has spent her life raising awareness about disability and the structural inequalities that limit the movement of people with disabilities.
You don’t have to read the whole book if you don’t have time. This summary will provide you with an overview of everything you can learn from this book.
Without further ado, let’s get started.
Lesson 1: There is a misconception that disabled people’s lives are intrinsically less valuable than other people’s
Imagine having to spend your whole life proving to others that your existence matters and that your life has value. Harriet McBryde Johnson, an attorney who specializes in disability rights, had to do just that every day. She was in a wheelchair and relied on electric propulsion.
Due to a disease that gradually destroyed her muscle mass, she had been severely underweight for more than 40 years. She had an S-shaped curve in her spine and supported herself with her elbows on her knees. Moreover, she was absolutely comfortable in her own skin.
Still, other people did not see that when they looked at her. People often approached her on the street to tell her how brave she was for venturing out, or that they wanted to end their own lives in her place.
They missed her joy at being alive, her excitement as she rocked back and forth in her chair, and her contentment when she felt the wind in her hair. Instead, they took one look at her and concluded that her life was not worth living because she had a disability.
In doing so, they unwittingly reinforced a harmful stereotype that is deeply rooted in our society: that the lives of people with disabilities are worth less than the lives of people without disabilities.
Johnson was tired of having to prove to these people that she was indeed content and that her life was at least worth living. So she generally just ignored the criticism. She knew she had to fight back, however, when she learned that a professor at Princeton was making the same venomous arguments that the lives of disabled people were inferior.
Peter Singer, the professor in question, is a philosopher who has developed a theory of preferential utilitarianism. He believes that parents should be allowed to end the lives of their children if the child has a severe cognitive impairment because these children have a lower chance of living a good and happy life than children born without such problems.
How are you supposed to talk politely to someone whose argument boils down to the fact that you should have been killed right after birth? When Johnson accepted Singer’s invitation to a debate at Princeton, she found herself in this predicament.
The main point of his argument, she told him, was wrong. She argued that he, like many others, makes the false assumption that a person’s disability determines the course of his or her life. However, there is no solid evidence for this. Singer confused his bias with factual information.
Lesson 2: It can be harmful to insist disabled people search for a cure
People sang and danced in the hot, crowded church. Grandmother Eric-Udorie asked June to place the wine-soaked host over her eyes. Her grandmother had promised her that if she prayed hard enough, God would restore her sight.
Eric-Udorie has felt like a malfunctioning machine for as long as she can remember. She struggles with her vision due to nystagmus, an inherited eye disease. Although there is no cure, her loved ones continue to hope for a miracle.
Unfortunately, the miracle did not happen. Eric-Udorie pleaded with God to heal her, albeit temporarily, but to no avail. She was ashamed beyond measure and felt terrible for letting her family down. Everyone had always pretended that her illness was only a temporary phenomenon, but she knew better.
Liz Moore, a person with chronic pain, also came to this realization. Moore had exhausted every avenue for curing her fibromyalgia, including Reiki, neopaganistic rituals, medications, physical therapy, dietary changes and more. That would mean giving up, her friends and family said, so they should never accept her disability. They thought if they just worked hard enough, they could get better.
But the search for treatment was persistent and grueling. Moore realized that until they learned to love and accept their bodies as they were, they would not be able to move forward in their lives.
Eric-Udorie had the same realization. She gave up trying to reason with God and stepped out of the veil of secrecy she had grown up in to embrace her identity as a visually impaired person. She no longer felt shackled by her impairment.
Instead of pretending to be healthy, she began to figure out how to function in society on her own terms. She stopped apologizing every time she did not follow a friend’s pantomime directions or missed a step. Her first trip to a coffee store was both terrifying and a triumph. After a long period of waiting, she finally began to live.
Lesson 3: It is possible to celebrate the bodies of disabled and queer people through tailored clothing
People with non-standard looks are often encouraged to conform to the majority in order to fit in. Think of the advice given to a woman who has undergone a mastectomy: she should wear a prosthetic breast. An example: transgender individuals who are told they must “pass” as a particular gender in order to be accepted.
Disabled and gender non-conforming people have access to clothing that reflects societal pressures to conform and fit in. Disabled people who are unable to sit or stand for extended periods of time may not find appropriate clothing options.
It is unclear if designers ever considered that disabled people might want to do things like go to a lecture, move around town, or even go dancing. These garments were not designed with disabled people’s pursuit of esthetic prominence in mind.
Sky Cubacub could no longer wear restrictive garments like jeans after developing a painful condition that prevented their stomach from properly digesting food. They looked around for suitable alternatives and were dismayed to find only mediocre clothing. It was boring and obviously designed for the elderly or those confined to a hospital bed.
Cubacub had been thinking about their gender for a while, but they still could not find suitable underwear. What people really needed was clothing that accepted and embraced their unique bodies and identities, no matter how they wanted to show themselves to the world. They decided to take a design class, and the result was Rebirth Garments.
The garments and accessories produced by Rebirth Garments are available to all people, regardless of their size, ability, or gender expression. These garments are meant to be seen. They feature a colorful geometric pattern. They are meant to be shown, not hidden.
To illustrate, imagine a bejeweled colostomy bag and multi-colored, breast-binding underwear that can double as a top. Or sensual, skin-tight plus-size dresses and garments with external seams designed for people with tactile sensitivity.
Rebirth’s fashion shows are more like dance parties, where models are encouraged to move in ways that are good for their bodies, and where the public can see how the clothes work in real life.
Taking care of one’s appearance is not a trivial matter. It says a lot about who we are in the eyes of the world. Rebirth challenges conventional beauty norms and creates visibility for disabled and queer people on their own terms.
Lesson 4: There is a myth that mental illness enhances creativity, but it can also create barriers
Reference is often made to Vincent Van Gogh and other artists as examples of geniuses whose suffering inspired them to create their best work. Shoshana Kessock, who also suffers from bipolar disorder, believes that the euphoria she feels during her manic episodes helps her write. When she was manic, she could write 12,000 words in a single night and draft an entire trilogy.
These bursts of frenzied productivity ended, however, when she was 16 and saw a psychiatrist after receiving a diagnosis. She was befuddled by all the medications he had prescribed her. She was no longer able to express herself artistically or even feel her own emotions. The drugs made her lose her memory and she gained a lot of weight. She was only 17 when she left high school.
Kessock decided the cost of treatment was not worth it, which is understandable. Ten years without medication in what she calls a “tornado” is her life. During her manic episodes, she felt like she was in seventh heaven, unable to sleep, writing and playing games for days. It was like she was floating through the air. But the lows that followed the highs were so violent that sometimes she could not even muster the energy to get out of bed.
The decision to go to college was a turning point. She suffered a nervous breakdown in the restroom after hearing her art teacher’s criticism. As a result, she went to the psychiatric clinic nearby for help. Her new doctor knew about bipolar disorder and its treatment. He assured her that he would help her find appropriate treatment.
On the second day of taking the new medication, Kessock noticed that the mental tornado had subsided to a light breeze. She could still write, but no longer had to wait for a manic episode; instead, she worked slowly and methodically, without the ups and downs she had experienced for so long.
Artists’ inability to create work is a direct result of their mental problems. However, they continue to create works despite their mental illness.
Van Gogh sold only one painting during his lifetime, not because his contemporaries did not appreciate his work, but because he was too ill to interact with society. The possibilities he could have achieved with the right amount of support and help are astounding.
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