Disability Visibility: First-Person Stories from the Twenty-first Century

This essay is preceded by a note: “Originally published on May 20, 2019, as a response to Texas Senate Bill 1033, which did not pass in the House of Representatives” (150). Texas Senate Bill 1033 proposes the blanket ban of abortions after 20 weeks in cases of “severe fetal anomaly.” Though this bill’s proponents tout it as a defense of disabled lives, writer Rebecca Cokley criticizes it as “one more assault on people’s bodies” (150). She argues that a bill like this will diminish all people’s bodily autonomy—especially disabled people’s.

Cokley acknowledges that prenatal screening is a “tough” topic in disabled communities and that some disabled groups—little people, deaf people, and people with Downs syndrome—regard their conditions “less as a diagnosis and more a culture” (150). These groups and others like them face ableism including eugenics via abortion and as a result, may lean towards pro-life values. Nonetheless, Cokley is a staunch proponent of bodily autonomy and pro-choice values.

Cokley and both of her parents have dwarfism. Her parents struggled to conceive and suffered three miscarriages before Rebecca was born. She believes that these struggles informed her mother’s “unwavering” pro-choice stance.

Although SB 1033 and similar bills are presented as bulwarks for disabled people, Cokley identifies their rhetoric as infantilizing smokescreens that portray disabled people as naïve, defenseless people who need saviors. Likewise, pro-choice activists often use disability as a what-if scenario to be guarded against. These dialogues also ignore disabled people who require abortions.

Cokley ends the essay by invoking Buck vs. Bell, “the 1927 US Supreme Court case in which the sterilization of people with disabilities was ruled constitutional [which] has never been overturned” (154). She points to this as another example of disabled people’s reproductive rights being stripped away. She concludes that SB 1033 will perpetuate the systemic mistreatment of disabled people.

This essay opens with a scene of Alice Sheppard at her physical therapist’s office. She jokingly states “I’m broken.” She attributes this joke to being a choreographer and dancer: “being somewhat broken is a way of life for me, and it has nothing to do with my disability” (155). She writes that the concept of brokenness interests her.

Sheppard says that dance taught her to understand her body “differently.” Though requiring crutches and/or a wheelchair was initially a roadblock, she incorporated her mobility aids into her dances by thinking of them first as extensions of herself— “my chair is my legs” (156)— and then as part of herself—“my chair is my body” (156). In her current practice as a dancer and choreographer, Sheppard seeks to “draw out the expressive capacity of disabled bodies and minds by acknowledging and actively drawing on the movement of impairment” (156).

This is a transcription of Wanda Díaz-Merced’s TED Talk on how her blindness led her to innovate as an astronomer. She opens by describing the birth of a star and “her” growth into a supernova that emits gamma rays. This star is a magnetar, a neutron star with an extremely powerful magnetic field “one thousand trillion times the magnetic field of Earth” (158). Gamma-ray bursts are “energetic” explosions that cannot be seen with the naked eye.

Díaz-Merced notes that sighted astronomers use plots and graphs to measure the intensity of light over time. After she lost her sight due to illness, she was no longer able to do this. This left her unable to do her science and made her feel isolated. She says that “I wanted to experience the spacious wonder, the excitement, the joy produced by the detection of such titanic celestial events” (158). Díaz-Merced realized that the data on the graph could be translated into sound. This process is called “sonification,” and sonic data allows her to do her job as well as she could when she could see.

Sonification made astronomy a more accessible field for blind people. It also allowed researchers to access data from a new perspective, allowing astronomers of all abilities to draw new conclusions. At the time of this TED Talk, Díaz-Merced notes that sonification is being taught at the Athlone School for the Blind in South Africa.

Mari Ramsawakh begins this essay by musing about common conceptions of incontinence; most people think it only affects babies and the elderly. However, she is in her mid-twenties and has lived with incontinence her whole life. Her incontinence is the byproduct of a spinal surgery she underwent at 10 months old.

As a very young child, Ramsawakh didn’t realize she was classed as disabled. However, due to bullying in grade school, she began to feel that something was wrong with her, stating that she had suicidal thoughts as a young child. She tried to hide her incontinence and be “normal,” but this required her to spend recess undergoing self-catheterization in the bathroom. If she skipped this process, she would have “accidents” in class.

In high school, Ramsawakh struggled with intimacy. She feared that she could not have sex with her then-partner due to her incontinence. She confided in a nurse who told her to seek a partner who was “into that.” Ramsawakh’s fears were later confirmed when her then-boyfriend stopped returning her calls after “another bout of bowel incontinence during sex” (165).

The stigma associated with incontinence affects both sufferers’ and medical professionals’ abilities to speak frankly. Between 50% and 70% of people with incontinence don’t seek medical help, and doctors are often unable to offer real solutions due to their discomfort in speaking about the subject. Ramsawakh explains how this stigma compounds accessibility and safety issues:

I’ve done everything I can to shorten the amount of time I use the bathroom. But the habits I’ve developed to do so actually jeopardize my health, increasing the risk of potentially life-threatening infections. To change these habits now would require another $50 per month for the extra supplies at minimum—a price increase I cannot afford as someone who does not have access to comprehensive health insurance (165-66).

Ramsawakh concludes the essay by saying that she wants to be able to speak about these issues without shame because the alternative creates a serious public health risk.

Author Shoshana Kessock opens this essay by describing a manic episode: “These days, I call it burning, but for most of my life, I called it flying” (167). She describes writing and working with intense focus. Writing days outside of manic episodes are normal and filled with routine self-care, puttering around, and slow, steady work.

Kessock pushes back on the popular belief that artists produce their masterworks in manic states. She uses Hannah Gadsby’s comedy special Nanette to help refute this idea. In it, Gadsby talks about Vincent van Gogh’s mental illness and its impact on his life–good and bad. Kessock reflects that “Hannah Gadsby told people artists don’t have to suffer for their art, and I’ll forever thank her for having the guts to stand up and say that to the world. Because I used to believe it was true” (168).

Kessock shares her psychiatric history: She was diagnosed with bipolar II as a teenager. Her parents didn’t understand her condition, and she got “bad advice” online that warned that going on medication would stop her from being an artist. She got little guidance from her psychiatrist. Though Kessock initially trusted him, he put her on medications that “killed” her creativity, deadened her emotions, made her sleep too much, and caused her to gain too much weight. When she complained, the doctor put her on more medications.

At age 17, Kessock dropped out of school due to emotional issues. She got her GED at 19, enrolled in college, and flunked out. Her medications made it impossible to function, so in 2002, she stopped taking them. The next 10 years were extremely volatile and difficult for Kessock. Though she made “horrible decisions” and got into chaotic, dangerous situations, she does not regret these years because she learned from them. At the time, she felt that her mania was inciting creative highs and incredible productivity, but she now reflects that “that was the illness talking” (172).

In 2012, Kessock enrolled in grad school. While there, she found a mental health counselor who helped her find medications that worked for her. At the time of writing, Kessock has been on medication for six years. Though she has faced significant challenges— including problems with managing her bipolar II— she is more creative and productive than ever. She no longer believes suffering is necessary to create art.

Ellen Samuels’s essay is structured around “crip time,” a term coined by disability scholar Alison Kafer. Crip time describes the nonnormative ways disabled people interface with time. Samuels writes:

[…] as my friend Margaret Price explains in her book Mad at School, we live our lives with a “flexible approach to normative time frames” like work schedules, deadlines, or even just waking and sleeping. Alison Kafer […] says that “rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” I have embraced this beautiful notion for many years, living within the embrace of a crip time that lets me define my own “normal” (175).

Despite Samuels’s embrace of crip time, this essay concerns its “less appealing aspects.”

Samuels developed a disabling illness in her early twenties. She describes her psychiatrist’s compassion for her multiple losses, and how her psychiatrist characterized Samuels’s unusual level of loss as premature–she lost her parents as well as her independence, an experience most people don’t have until late in life. Because of this, she concludes that “crip time is time travel” (175).

She also identifies crip time as “grief time.” Her mother died of cancer two years before Samuels’s disability emerged. At first, her doctors thought Samuels’s symptoms were physical manifestations of grief. Though she misses her mother, Samuels finds it more difficult to cope with losing her old self. She simultaneously embraces her disabled self and longs to escape her chronic pain. This paradox transitions into crip time as “broken time”: People with disabilities are forced to defer to their bodies and minds before fulfilling their own goals and desires. They must prioritize their symptoms whether they want to or not. Samuels writes about losing the capacity to hold down a nine-to-five job as an example.

To support herself, Samuels returned to grad school and aims to become a professor. She sees this career as compatible with crip time, unlike most jobs. She writes that her time in grad school was mostly “sick time,” but it was also “writing time.” She uses Seabiscuit author Laura Hillebrand’s testimony as an example of writing time; Hillebrand’s chronic fatigue syndrome dominated her life, and she structured her authorial activities around it.

Samuels muses that, if she wrote a bestselling novel like Hillebrand, it would be about vampires “because crip time is vampire time” (181). Like a vampire, Samuels sleeps and wakes at odd hours and feels out of step with society. “I look twenty-five, feel eighty-five, and just want to live like the other fortysomethings I know” (181). She concludes that this is not possible; she permanently lives in crip time.

Reyma McCoy McDeid is diagnosed with autism. She opens this essay by describing a “rite of passage many disabled people experience” (182): being called a “lost cause.” This essay revolves around times when either McDeid herself or one of her pursuits was called a lost cause.

When McDeid was abandoned by her mother, her maternal grandparents declined to adopt her. McDeid attributes this to racism: Her white grandparents were locally renowned for fostering children, but all of their foster children were white. McDeid refers to herself as her mother’s “little black mistake” (182).

As a teenager, McDeid’s aunt told Reyma that her grandfather called her a lost cause. Her aunt had initially intended to adopt her, but he had dissuaded her. McDeid’s autistic behavior had made her family worry that she had an intellectual disability. Her aunt assured her that her grandfather was proud of her now, as she earned a full college scholarship. McDeid didn’t discuss her autism again for over a decade.

At age 31, McDeid moved to Mount Shasta to become a Zen Buddhist monk because she believed her introversion would make her a natural fit. The commune at Shasta Abbey was run by two “wealthy hippies,” Sharon and Kelly. “Sharon was a self-published author and had earned a PhD in philosophy from a school that later lost its accreditation” (183). Sharon diagnosed several members of her family with autism, including the shy and quiet Kelly.

McDeid critiques Sharon’s behavior, saying that people without credentials or training in the mental health field should not be diagnosing or treating others, let alone writing books about the subject. McDeid later discovered that Sharon was “treating” Kelly’s autism by making him drink bleach. When McDeid approached another monk about Sharon’s behavior, her concerns were dismissed as “divisive.”

McDeid left Mount Shasta and got a job, got married, and became pregnant. Her hypersensitivity to sensory input and social problems made her pregnancy difficult. She disclosed her autism diagnosis at work and was formally reprimanded shortly thereafter.

Later, McDeid became the executive director of Central Iowa Center for Independent Living (CICIL), an organization that several others warn her is a “lost cause.” She concludes the essay by writing that, under her leadership, CICIL has become an award-winning organization. McDeid is the first developmentally disabled person to hold an executive office at CICIL.

This essay opens with a scene of author Britney Wilson waiting for an Access-A-Ride vehicle. Access-A-Ride is New York City’s paratransit service, intended to bridge the gap in the city’s largely inaccessible subway system. Though her driver does his best to help her across the street, Wilson still feels uneasy.

Wilson has cerebral palsy and relies on Access-A-Ride to travel, as she has since she was 11 years old. She has always been aware of the problems with this service. Now an adult with a law degree, she advocates for paratransit reform. Major issues she has observed include abusive and threatening drivers (although she notes that this is a minority; many Access-A-Ride drivers are great), overworked drivers, inefficient routes, and frequent stranding of would-be passengers. Access-A-Ride trips are frequently unpredictable, long, and unpleasant.

Wilson recalls a time when a driver exposed himself to her. Upon reaching her destination, he announced that he had to pee. “Grabbing a Styrofoam cup, he began walking toward me. […] He began to unzip his fly and then it hit me. He was going to pee, right then and there, in my face” (197). Fearing sexual violence, Wilson waited silently for him to finish. She deboarded the bus as soon as possible and filed a complaint. She is still unsure of what that driver’s intentions were.

Wilson compares the tribulations of being disabled to the racism she experiences as a Black woman. The essay ends with conversations with her uncle and grandmother, who are both dismissive of her complaints.

This is a transcript of Alice Wong’s 2017 interview with Lateef McLeod on Episode 3 of the Disability Visibility Podcast. At the time of recording, McLeod was a graduate student of Anthropology and Social Change at the California Institute of Integral Studies.

Wong opens the interview by asking McLeod which assistive technologies he uses and “can’t live without.” McLeod responds that he relies on his power chair and iPhone apps like Proloquo2Go and Proloquo4Text, which he uses to communicate. Alice responds that she is also in a power chair and agrees that they are important. She prompts him to talk more about his apps.

Proloquo2Go and Proloquo4Text facilitate a form of communication called augmentative and alternative communication (AAC), which “is nonverbal communication for people with speech disabilities, using symbols, letters, and words on low-tech and high-tech devices” (201). McLeod says that he first used AAC at age six when he received a Touch Talker.

McLeod notes that his iPad is much less expensive than his other AAC devices because iPads are mass-produced for everyone instead of just people with communication disabilities. He thinks this is a good thing. His Touch Talker was bulky and difficult to use. Before getting his Touch Talker, he communicated by pointing to picture boards, using simple words, and using rudimentary sign language.

Wong asks McLeod what he would like future AAC devices to look like. He responds that they need to be more available and affordable. He also says that he would like to have a personalized vocal ID for his devices.

The interview ends with McLeod reciting his poem, “I Am Too Pretty for Some ‘Ugly Laws,’” which addresses the history of American “ugly laws.” Ugly laws were used to keep “diseased, maimed, mutilated, or […] deformed” (205) people out of public spaces.