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

This essay grapples with the increasing number of annual climate disasters from an intersectional perspective. Author Patty Berne asserts that queer, disabled, impoverished, and non-white communities are particularly vulnerable to the long-term damages caused by these events.

In recounting several disasters, she says that members of oppressed groups have necessarily developed survival instincts to navigate in societies that keep them in precarity. Because of this knowledge, she believes these communities are uniquely situated to survive crises. She compares the “havoc” that capitalism wreaks on oppressed peoples’ bodies to the way “capitalism abuses and exploits the land” (211).

Berne praises the organizers from LGBTQ+ and disabled communities in the Bay Area and Puerto Rico who preserved and distributed insulin and air filters in the wake of natural disasters. She concludes her essay with the statement: “Welcome to our world. We have some things to teach you if you’ll listen so that we can all survive” (213).

This essay, written and cosigned by the members of the Harriet Tubman Collective, asserts that the Movement for Black Lives (“the Movement”) is incomplete without active attention paid to Black people with disabilities. They cite that “[t]he Black community has the highest prevalence of disability— with almost a full quarter of the Black population having some form of a disability” (214). According to this essay, disabled people comprise the largest American minority group.

This essay criticizes the Movement for presenting policy outlines geared towards justice for “all Black people” that include no mention of disabled Black people or the intersection of racism and ableism. To challenge this, the Harriet Tubman Collective presents statistics on intersectional racism, noting that “at least 60 to 80 percent of the people murdered by police are, in fact, Disabled and/or Deaf people” (214). They also highlight disability status as a strong predictor of financial hardship and the vast overrepresentation of disabled prisoners in the justice system, and they pay special attention to neurodiversity and mental illness. This essay argues that Black liberation cannot be achieved unless disabled narratives and leadership are centered.

This essay includes a case study: Darnell Wicker, a deaf, Black veteran, was killed by police officers in 2016. Officers shot him within a few seconds of shouting orders at him, but Wicker’s family asserts that he likely did not hear the commands because he relied on lip reading to communicate with hearing people. Thus, Wicker’s death was the direct product of simultaneous ableism and racism.

The essay concludes by reiterating that white supremacy cannot be defeated without directly addressing ableism and audism (discrimination against deaf people).

Karolyn Gehrig opens this essay by describing a development in her disability that impedes her speech: “[W]hen I most needed my voice, a blood blister grew in the back of my throat […] New bones grew on the floor of my mouth, crowding my palate” (219). She goes on to describe the difficulty of dating with these traits. Some of her dates profess to find their attraction to her baffling due to her disability and crudely ask how her disability impacts her ability to have sex.

Gehrig transitions to discussing the Time’s Up and #MeToo movements in Hollywood. These movements were launched to spread awareness about sexual violence, especially against women. Gehrig is unsettled at the lack of attention paid to disabled sexual violence survivors within these movements. She also mentions two recent box office hits: Three Billboards Outside Ebbing, Missouri (2017) and The Shape of Water (2017). She is highly critical of the way they represent disability. She returns to these critiques throughout the essay, noting the ableism inherent to their writing and casting.

Gehrig introduces two important figures from her life. The first is her aunt Virginia, who has developmental and intellectual disabilities. When Gehrig was three years old, her mother became Virginia’s caretaker. Virginia, then an adult, moved in with the Gehrigs. Even before her own diagnosis, young Karolyn felt a strong kinship with Virginia. The second figure, Gehrig’s ex-husband, is a TV editor. She compares his career— in which he cut up and edited together disparate scenes— to his repeated sexual violence against her. Because he primarily assaulted her in her sleep, she didn’t realize what was happening for years. She sued him, and the legal battle retraumatized her. Ultimately, the DA declined to prosecute despite having proof of the assaults because “a jury of your peers will find it difficult to believe a man would do this to his disabled wife” (222).

Gehrig states that Virginia experienced sexual harassment or assault at work–she doesn’t know the exact details because Virginia would only speak vaguely about the situation. Gehrig believes that Virginia was being assaulted by an older man on the bus. While Gehrig’s mother tried to have Virginia separated from the drivers, Virginia eventually had to quit her job to escape this treatment. Gehrig also notes that, because she is intellectually disabled, Virginia was paid “subminimum wage” at this job, making under $10 a week. Gehrig finds the injustice of Virginia’s wages similar to her own experience with the court system. However, she also notes that intellectually and physically disabled people are widely regarded as different from each other. She questions the nature of her own affinity for her aunt as a fellow disabled person.

The essay ends with a brief discussion of Gehrig’s ex-husband’s desire to achieve fame. He fantasized about leaving Gehrig at home to avoid the optics of being seen with someone in a wheelchair. Gehrig also recalls her aunt’s obsession with the glamour of Hollywood. Gehrig concludes: “This year when I run my tongue around in my mouth, I know I am sharpening those new bones into teeth” (224).

This essay begins with a poem, “Psych Survivors Know,” which relates the experiences of committed psychiatric patients to undocumented immigrants in ICE detention camps. The poem ends with the line “There will be an after//Survive for it” (225).

Author Leah Lakshmi Piepzna-Samarasinha follows the poem with an italicized paragraph addressing an unnamed “you.” The speaker, presumably Piepzna-Samarasinha, asks if you remember a series of events and “first times,” such as your cancer diagnosis, experiences of ableism, and experiences with climate disaster. Many of these events are bittersweet moments imbued with hope: “Remember the first time you saw disability justice (DJ) listed as a section at the library […] the medical abuse payouts […] when we built the first memorial for everyone we lost” (225).

The italicized section is followed by a statement about this essay’s genesis. At Alice Wong’s request, Piepzna-Samarasinha wrote it as a follow-up to a chapter from her book Care Work: Dreaming Disability Justice: “Cripping the Apocalypse: Some of My Wild Disability Justice Dreams.” She lists several recent events that she considers apocalyptic, including the ICE camps, Brett Kavanaugh’s Supreme Court ascension, and the increasing frequency of climate disasters.

Piepzna-Samarasinha writes that “the Mad, sick, disabled, Deaf dreams we are always dreaming and have always been dreaming [are] way beyond what we are allowed to dream” (226). In her experience, when she asks fellow disabled people to envision an “accessible future,” they often struggle to picture it. Still, she is a strong believer in the value of intersectional and disabled “care webs,” or mutual aid networks. She also values the power of community organizing and states that disabled people are each other’s best allies.

Piepzna-Samarasinha muses what disabled people’s most radical dreams might look like. She wonders how to facilitate solidarity between disabled people and other minority identities, how to combat white supremacy inside and outside of disabled circles, and how proponents of disability justice might organize in the near future.

The essay concludes with another poem, this one praising the resilience of disability justice advocates.

This essay is about author Jamison Hill’s relationship with his girlfriend Sharon. Both are diagnosed with an inflammatory multisystem disease called myalgic encephalomyelitis.

Because of his myalgic encephalomyelitis, Hill is completely bedbound and unable to speak. He developed his condition in his early twenties. Before falling ill, Hill was a bodybuilder. He also had other girlfriends before Sharon. When his illness worsened, it stopped him from dating and working out. He befriended Sharon online while bedbound. Hill regrets that he cannot verbally tell Sharon he loves her. At the time of writing, he hasn’t been able to speak for three years, meaning that Sharon has never heard his voice at all.

Though they have many of the same symptoms, Hill and Sharon each have symptoms that the other does not. Unlike Hill, Sharon can talk and get out of bed; however, she has been sick longer than Hill and experiences “unrelenting nausea” and difficulty digesting food.

Hill is from California, and Sharon is Canadian. Their relationship is serious and long-term but also long-distance. “Since I am bedridden, the only way we can be together is for her to travel across the continent. But even with her willingness to jeopardize her health by traveling so far, we are often away from each other for months at a time” (235). Their visits are “monthlong sleepovers.” Because Hill cannot speak, they still communicate via text while together.

Because of their shared experiences, Hill and Sharon share a unique, intimate understanding of each other’s symptoms and struggles. Hill writes that “nothing about [his] bedridden life makes Sharon uncomfortable” (237); they both recognize that feeding tubes and bedpans, while not “sexy,” are fixtures of their life together. Before Sharon, Hill wasn’t sure if two disabled people could have a relationship because he assumed an able-bodied partner would have to take care of their disabled partner. Now, he thinks differently, stating that he and Sharon can care for each other in unexpected ways. They cannot physically render basic care to one another, but they can do many things for one another online.

Once, Hill tried to say “I love you” to Sharon out loud. Producing a thin whisper caused excruciating jaw and throat pain, and Sharon could not understand his words. Hill was crestfallen at first, but Sharon reassured him that she loved him whether they spoke with each other or not. He concludes that “For us, love means never having to say anything” (238).

This essay uses author Stacey Milbern’s favorite boots—her “crip socks”—as a narrative device to examine disabled culture and discuss “crip elders.”

Milbern’s crip socks are made to look like shoes, making them perfect for wheelchair users. They first belonged to two of her “personal heroes” and favorite writers. Originally, Harriet McBryde Johnson owned them; they were a handmade gift from her sister. When Johnson died, she gave them to her friend and fellow wheelchair user, Laura Hershey. When Hershey died, her surviving partner mailed them to Milbern even though they didn’t know each other personally. Milbern states, “I don’t understand why I was the lucky recipient, but I am honored to be in this lineage” (240). Milbern regards her crip socks as a symbol of disabled culture and ancestry.

Milbern defines “crip ancestors” as crip elders who have passed away. Her definition of ancestry goes beyond blood relations. “Ancestorship, like love, is expansive and breaks man-made boundaries cast upon it, like the nuclear family model or artificial nation-state borders” (240). Her definition of ancestry is, therefore, “queer” and “cripped.” She speculates that crip elders are watching her and other disabled people from the afterlife. She believes they share living disabled people’s highs and lows and learn from modern disabled theory and movements. She suspects that their personal identities are changing, and they are engaging with contemporary discourses. The essay closes with the statement: “My ancestors and I are learning and loving. Together” (243).

This essay begins with a description of a dark theater. The audience is predominantly disabled, and the space itself is seamlessly accessible. Choreographer/performers Alice Sheppard and Laurel Lawson enter the stage in wheelchairs and perform a routine, “weaving intricate patterns with their bodies and wheelchairs” (244). Author s. e. smith is overcome with excitement as they realize this space is for them and disabled people in general.

To smith, this feeling of belonging is rare and special. “Members of many marginalized groups have this shared experiential touchstone, this sense of unexpected and vivid belonging and an ardent desire to be able to pass this experience along” (245). They muse on the uniqueness of “crip space” and consider the importance of having spaces dedicated to marginalized groups. They note that able-bodied people are welcome in this theater, but they are not prioritized or considered the default audience member.

Smith discusses the “pitfalls” and “paradoxes” of crip space. Some critics of safe spaces for marginalized groups regard their existence as a statement of hostility; smith rebuts: “as long as claiming our own ground is treated as an act of hostility, we need our ground” (246). Smith also wonders how to create inclusive, inspiring spaces where world-changing conversations can happen.

When the performance concludes, the audience leaves this “cripped space” and returns to a world where they are gawked at by strangers and subjected to inaccessible infrastructure.