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

This is a eulogy for Ki’tay Davidson, written by his life partner Talila A. Lewis. Ki’tay was “a proud Black Disabled transman” (38) who died suddenly in 2014.

Lewis describes Ki’tay as “a revolutionary dreamer, leader, and lover […] who prized people, prioritized love, and propelled action empowering all” (38). Upon receiving the “Champion for Change” White House award, he wrote an open letter celebrating his community and allies. He describes himself as “a single representative” of the community’s efforts to facilitate “inclusive and loving environments for all” (39).

Throughout the eulogy, Lewis praises Ki’tay’s compassion and his ability to “actively love” people who discriminate against others, as well as his humility and commitment to justice. Lewis also quotes Nelson Mandela, Assata Shakur, the Dali Lama, Martin Luther King Jr., and Paulo Coelho. Talila concludes the eulogy with the slogan “Love Wins.”

Maysoon Zayid describes the way her cerebral palsy impacts her observance of Ramadan. Zayid is a devout Muslim. The Qur’an exempts disabled people from fasting during Ramadan. Since age eight, Zayid took pride in fasting anyway. Her family treated her “like a champ” for fasting and gave her the option to abstain every year. Zayid explains that other options are given to accommodate those who cannot fast, such as donating to feed someone who is hungry or performing other charitable acts. With this, her mother “has donated on my behalf every single year I have fasted, just in case it ever got to be too much and I had to give up” (45).

Zayid first broke her fast in 2013 while traveling through the American South on a comedy tour and extended documentary film shoot. The August heat, the stress of performing, and the lack of food and water exacerbated her palsy to the point that she shook violently and struggled to breathe. Since then, she has donated instead of fasting. Though she misses fasting, Zayid is unashamed to abstain from it. She is “happy to take on [her] newest mission of reminding those who can’t fast that there is no reason to put themselves at risk” (45).

Ariel Henley and her twin sister have Crouzon syndrome, “a rare genetic disorder where the bones in the head do not grow normally” (49). As a result, both girls have “facial disfigurement[s]” which require surgical intervention for both medical and aesthetic purposes. At her regular appointments between surgeries, the doctors quantify Henley’s flaws and meticulously photograph her face from every angle.

Henley recalls her seventh-grade art teacher, Ms. J, teaching the class about the golden ratio: a mathematical formula that quantifies beauty on a scale of 1-10. She states that she wouldn’t rank higher than a two on the golden-ratio scale.

Henley is bullied in school for her appearance. This causes her to develop suicidal thoughts, so her mother takes her to a therapist. The therapist tells Henley that she has “no connection with [her] physical self” (50) because the many surgeries changed her appearance drastically. The therapist encourages her to take photographs of her own face for herself.

A few weeks after getting this therapy assignment, Henley finds pictures of herself and her sister in an old issue of Marie Claire magazine. She remembers being photographed and interviewed for it at age nine. Though the magazine is in French, she is able to translate portions of it. The headline reads, “Their faces resembled the work of Picasso” (52). She shreds the magazine.

At school, Henley tells Ms. J about the magazine article. Ms. J shows her a picture of Da Vinci, who famously used the golden ratio, and Henley realizes that he isn’t beautiful either. Ms. J tells her that being compared to a Picasso is an honor and calls her “a masterpiece.” Henley begins to regard her appearance as her art.

Jen Deerinwater, a citizen of the Cherokee Nation of Oklahoma, describes her experiences with anti-Indigenous racism in medical settings. She recalls being questioned about her ethnicity in the emergency room while “in so much pain I couldn’t move” (54), being called a “redsk*n” by doctors, and being denied pain medication by a white nurse.

Deerinwater explains that due to centuries of systemic genocide by the US government, Indigenous people face shorter life expectancies and more medical problems than any other ethnic group in the United States. “Since the U.S. government was designed to kill us, literally and metaphorically, the medical industry is continuing to fulfil that mission” (57). The Indian Health Service (HIS) is “grossly underfunded,” and 25% of Natives in rural areas are food insecure.

Deerinwater concludes that, despite her frequent experiences with racist medical trauma, she will continue to seek care so that she can thrive as her ancestors would have wanted her to.

June Eric-Udorie is a Black English girl with congenital idiopathic nystagmus, which impairs her vision. Her essay opens with a scene of herself and her grandmother in church the Sunday before Christmas. Her grandmother tells her “If you really believe, if you really pray and cry out, then God will heal you” (59). Though June knows that her nystagmus won’t be healed, she goes through the motions of praying for it anyway. June’s family is extremely religious. They only discuss her nystagmus openly when insisting that God will heal her. June feels a great deal of shame over her inability to be “fixed.”

When a doctor asks June if she would like to register as partially sighted, she is “stunned” because she does not feel she has “the right to claim a disability” (61). Later, she calls her mom and tells her what the doctor said. Her mother hangs up on her, and they never discuss it again.

At the time of writing, June has proudly claimed “disabled” as part of her personal identity. This helps her let go of her shame and function more confidently in everyday life. She ends the essay by saying when she goes to church now, she feels “happy,” “whole,” and “free.”

Jeremy Woody, a deaf person who experienced incarceration, describes life in a Georgia prison without accommodations for deaf people. No one in the facility knew sign language except for a few other deaf inmates. Woody describes his level of literacy as low, so he struggled to write messages and read lips in prison.

While incarcerated, Woody was unable to take classes or enroll in reentry programs because they were not equipped for deaf students. When he was sexually assaulted, he was unable to report it. He was generally unable to communicate with doctors, guards, chaplains, barbers, counselors, and other inmates.

When his health declined, Woody was sent to a hospital where he was diagnosed with cancer. The hospital had a sign language interpreter. When he returned to prison, no one could answer any questions about his new medication. Woody wondered why the prison couldn’t have an interpreter too.

Disabled inmates were regularly housed together. While he was once housed with another deaf person with whom he could sign, Woody was also regularly placed with blind people with whom communication was impossible. “They couldn’t see my signs or gestures, and I couldn’t hear them” (64). He describes his prison experience as overwhelmingly isolating.

In an afterword, Christie Thompson, a staff writer for The Marshall Project, states that Woody is “suing Georgia corrections officials over his treatment in prison” (66).

Jillian Weise’s essay centers on the social dynamics of being a “cyborg.” In Weise’s case, being a cyborg means using a prosthetic leg, but she includes any disabled person who has technology incorporated in/on their person, (e.g., a deaf person with a hearing aid or cochlear implant).

While reading The Economist, Weise sees an article coauthored by artificial intelligence (AI). Though the human writer states that the blurb “lack[s] meaning,” Weise is moved by the words: “I believe she/he/they/it has written one of the most beautiful sentences I’ve read in The Economist. ‘A single organ is a large amount of energy, which is particularly intense.’ Yes—fellow cyborg!—so intense” (67-68).

Weise finds it “intimidating” to identify as a cyborg. She is concerned that the term may create a flattened definition of what it is to be disabled. She notes that nondisabled transhumanists fetishize the concept of cyborgs, but they think about cyborgs in a limited way: “They like us best with bionic arms and legs. […] They don’t count as cyborgs those who wear pacemakers or go on dialysis. […] They want us shiny and metallic” (68). Weise feels that her status as a “common cyborg” subverts these biases.

Weise argues that transhumanism is an extension of the 20th-century American and Italian futurist movements. She identifies the contemporary transhumanist Ray Kurzweil as a tryborg.

At a virtual conference, a Google employee tells Weise that there are no disabled people in their department. This reminds her of a quote from futurist Filippo Tommaso Martinetti: “There are no Jews in futurism” (72).

Weise critiques “cyberfeminist” writer Donna Haraway. In Weise’s view, Haraway’s “A Cyborg Manifesto” (1985) coopts cyborg identity without including disabled women. Weise is critical of Haraway’s statement that writing by women of color is the liberating “technology of cyborgs.” Weise cites the case of Sandra Bland, an outspoken Black Lives Matter activist whose vlogs and writings led to her being targeted and killed by police officers.

The essay ends with a survey of people selling prosthetic legs (“cyborg parts”) on eBay. She notes that she must be careful of how much/how little she walks because her insurance company could deny her a new prosthesis based on this data.

Liz Moore explores the nuances and tribulations of seeking cures for their ailments. They acknowledge “the social model of disability, which states that we are disabled by society and lack of access rather than our bodies” (78). They point out that many deaf and autistic communities reject the notion of “curing” their conditions altogether. Moore also highlights that “the cure mentality […] can be a slippery slope towards eugenics when applied by abled people” (78). While Moore would gladly welcome a cure for their chronic ailments, they no longer wish to pursue one.

Moore chronicles their experiences seeking treatment from doctors and exploring neopagan remedies. They found little success, which created a feedback loop of self-hatred and disappointment.

Moore describes a period when their symptoms went into full remission after taking medication for Lyme disease, even though they were diagnosed with fibromyalgia. After their prescription expired, though, their symptoms returned in full force. Going back on the medication exacerbated the pain and nearly killed them. Moore had a depressive episode and was hospitalized.

For several months, Moore suffered from a “skull-splitting headache” that doctors were unable to treat. They feared it would last for the rest of their life until a physical therapist successfully treats it. Despite this success, Moore is aware that many of their ailments remain. They are exhausted from constant tests and medical interventions. They conclude that, instead of seeking cures, they want to “accept myself for who I am: battered, broken, hoping for relief, still enduring somehow” (83).