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

The title of this essay comes from author Sky Cubacub’s vision for a clothing movement that centers queer and disabled bodies. Cubacub is a transmasculine fashion designer. At age 21, Cubacub developed a “mysterious” digestive problem that limited their ability to wear certain garments without pain. In response, they took time off from school at the School of the Art Institute of Chicago and set the goal of becoming a “new person.” They held a “Rebirthing Ceremony” for themself.

Cubacub returned to school in 2014 and began studying garment making. This led them to create Rebirth Garments, a boutique that specializes in “custom-made, gender-nonconforming lingerie, clothing, and accessories for people on the full spectrum of gender, size, and ability” (91). Cubacub states that there are few accessible clothing options for disabled wearers. In their view, most disability-friendly clothing strictly focuses on functionality and comfort without catering to self-expression or personal style. Products from Rebirth Garments are intended to be both accessible and “loudly” queer.

In developing their brand, Cubacub took inspiration from the 19th-century Women’s Dress Reform Movement initiated by the suffragettes. This movement emphasized comfortable and functional clothing for women, doing away with practices like tightlacing corsets and introducing bloomer suits with loose trousers. The concurrent Aesthetic Dress movement celebrated natural body shapes rather than contorting bodies to fit specific silhouettes or fashions.

Cubacub presents their brand’s “current recommended approach to radical visibility” (95). This approach encourages fashion choices that favor bright colors and style choices that “highlight” gender-nonconforming and disabled bodies. They conclude the essay by describing their fashion performances, which include dancing, unlike a stereotypical “stoic runway.”

Haben Girma’s essay centers on her relationship with her seeing-eye dog, Mylo. The essay opens with a scene of the pair crossing the street. She describes the sensory experience: “‘Forward,’ I repeated. The harness shifted, and I knew he was peering back at me. Some barrier, unseen and unheard by me, blocked our passage” (99).

Girma is deafblind and admits that she once believed that “guide dogs lead blind people” (99). Though she initially wanted a guide dog to help her navigate in college, she went to the Louisiana Center for the Blind to develop her blindness skills and confidence instead. Once she mastered independent navigation, she traded her cane for a guide dog named Maxine. She compares this change to “switching from a bicycle to a tesla” (99), noting that Maxine was her companion and they worked together to navigate the world.

Girma mourned deeply when Maxine died of cancer, but she “could not” and “would not” go back to using a cane. At the time of writing, Girma has been with her second dog, Mylo, for a year; the pair have traveled across the United States and internationally. Girma regards her dogs not as “guides” but as travel partners.

This essay opens with author Diana Cejas lying in a hospital bed after having a stroke, barely able to move or speak. A nurse shares her own experience of being hospitalized after a car accident. The nurse says that her life was not great before the accident, and she calls the accident a wake-up call, a “blessing.” She suggests Cejas’s stroke might also be a blessing. Cejas wants to call her a liar, but she is unable to speak.

Cejas was a resident at this hospital before suffering a stroke and developing a rare type of cancer. Upon returning to work, Cejas realizes that all of her colleagues and coworkers already know what happened to her. “Being an ‘interesting’ patient who also happened to be a trainee made me a morbid little celebrity” (103). Her colleagues saw her at her most vulnerable. Medical professionals inside and outside of the hospital are familiar with her story, which she finds profoundly embarrassing. Cejas finds her colleagues’ condolences “unbearable.” One of her interns commiserates with her about this; she, too, suffered a sudden illness and experienced the same patronizing attention.

Cejas acknowledges that studying medicine did not prepare her to be a patient. The only skill she learned as a physician that helped her in recovery was “how to work through [her] exhaustion” (106). She realizes that telling stories about both work and her illness relieves stress.

As Cejas continues her recovery, she returns to a normal workload of 60 to 80 hours a week. She still struggles with fatigue and retains physical signs of her stroke. When she transfers to a new hospital to become a neurologist, she worries that “someone somewhere would look at me in my white coat and see me and my mismatched hands and my crooked mouth and see me, injured and small, in my bed in the ICU” (107). She remedies this by telling her story openly on her own terms. When she shares her struggles with illness, other people at her hospital open up about theirs as well. This commiseration provides her with a feeling of confidence, community, and genuine understanding.

“Canfei to Canji” concerns the tension between Sandy Ho’s cultural background and her physical disability. She is Asian American; her mother fled Vietnam for China, then left China for the United States in the early 1980s. Around that same time, Ho’s father also left China for the US. While Sandy’s parents were in China, widespread cultural attitudes toward disabled people were overwhelmingly negative. By the time these attitudes began to improve, Sandy’s parents had already left.

The title of this essay comes from a linguistic shift in Chinese culture that began in the 1990s: “Chinese characters used to refer to people with disabilities changed from canfei (useless) to canji (sickness or illness); the push to understand disability as a social construct has been under way for less than a decade” (110). At the time of writing, there is a push to amend canji to cán zháng (disabled and obstructed), but this is not yet standard practice.

When she was born, Ho’s parents were unsure of what to do with her. Some family members insisted she was a “useless burden” who should be abandoned, while others insisted that she was a “blessing.” Her Chinese name, Hoa Tien Yun, (gift from the heavens) reflects the latter sentiment. She shares her English name (Sandra) with her great-aunt, who supported her relatives through the immigration and citizenship processes.

Ho regards herself as “the culmination of old East Asian attitudes and new immigrant possibilities” (112). She faces ableism stemming from both American and East Asian cultures, but she is determined to exercise her right to “take up space.” Though her identities are in tension, they can’t be separated from each other, as she is Asian, American, and disabled no matter where she is.

Keah Brown opens this essay by writing, “Embracing my own joy now means that I didn’t always. Hope is my favorite word, but I didn’t always have it” (115). She is a Black woman with cerebral palsy. In 2019, she published a book of essays called The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me. Though she was pleased by the praise her book received, she also received negative responses which she believes are rooted in her critics’ discomfort. “These readers, both disabled and not, reacted defensively because they’re not centered in my story— because I’m calling for inclusion that decenters whiteness” (115). She is undaunted by this and remains eager to champion Black women’s stories.

Brown writes that, in 2017, she created the hashtag #DisabledAndCute. She deflected criticism from “naysayers” who found the word cute infantilizing and described her project as “inspiration porn.”

Brown has decided to “live unapologetically,” meaning that she no longer apologizes for taking up space in public. She accepts that not every day will be joyful or easy. She used to be “a very self-deprecating and angry person who scoffed at the idea of happiness” (118), but through persistence and conscious effort, she was able to change her attitude. She now finds freedom in embracing joy.

This essay focuses on author Keshia Scott’s relationship to sexuality and womanhood, particularly how her blindness impacts her sexuality and gender.

Scott writes, “I was always the last girl in my group of friends to reach a milestone. Last to get my period, last to start shaving, last to feel sexual attraction, last to start masturbating” (119). Her essay is structured around these milestones, recapping significant moments in her pubescence and sexual development.

Before she got her period, Scott believed it was the sole barrier between girlhood and womanhood. When she finally got it at 16, it was painful and irregular. She realized that womanhood is not defined by menstruation; it is a complicated and constantly evolving identity.

Scott began shaving at 17 due to social pressure from others. She shaved her legs and underarms because her friends did it. When her brother’s friend saw her in a bathing suit, he expressed disgust at seeing her pubic hair. She felt ashamed and began shaving her vagina completely. At the time of writing, she does not shave anymore.

Scott first experienced sexual attraction at the age of 21 when she befriended a poet. Regardless of her attraction to him and curiosity about sex and intimacy with him, she still felt ambivalent about sex. At 22, Scott started masturbating. While books and essays encouraged her to “romance herself,” she found the process awkward and unappealing: “it felt too much like I was on display” (121). She preferred to masturbate without fantasizing.

At 23, Scott’s mother began questioning her about her sex life and romantic future. Internally, Scott wondered how she could simultaneously feel attracted to men and aroused enough to masturbate but uninterested in sexual intimacy with others. She got her answer after taking a feminism and sexuality course in college. She complained to a friend that disability was not discussed at all in the course; the friend responded: “disabled people were either asexual or hypersexual and it wasn’t complicated at all” (123). Though Scott was offended by her friend’s ableism, she was also bothered by the idea that she might be asexual.

Scott was terrified that her sexuality might be determined by her disability. She also didn’t understand how she could be asexual if she fantasized and masturbated. She researched asexuality and felt better when she learned that both disabled and nondisabled people can and do identify as asexual. She also learned that some asexual people choose to masturbate and/or have sex. Now, Scott proudly claims her asexual identity.

Jessica Slice opens this essay by admitting she doesn’t always “feel like” a mother. She identifies these feelings as imposter syndrome: a colloquialism for unfounded feelings of self-doubt and incompetence. In Slice, these feelings stem from physical impairments caused by Ehlers-Danlos syndrome. This is a genetic condition that encompasses physiological and neurological problems: “Though I can walk for short distances, my ability to be upright is unpredictable. My joints dislocate easily. Regulating my body temperature is particularly difficult; being out in weather above 75 degrees is dangerous” (126).

Slice writes that her ability to perform everyday tasks that an able-bodied parent might is limited. She is frequently bedbound. She cannot lift her son Kahlil, play with him when he is feeling energetic, pick out his clothes, or take him to preschool. Her husband David does those things. Though she spends time with Kahlil during quiet moments, Slice reports longing, sadness, and shame at her inability to be present for her son in every arena.

Throughout the essay, Slice describes the process of adopting Kahlil. She and David took him home from the hospital as a foster son when he was eight days old and officially adopted him after 18 months. When he was a young infant, Slice’s disability did not interfere with her ability to care for him. However, by the time he was six months old, he was moving more, and it became harder for Slice to keep up. He started daycare at nine months old. By the time he was 14 months old, Kahlil was too “fast and strong” for Slice to handle. To manage him more effectively, she purchased an electric wheelchair that cost $100,000 even with insurance.

Slice concludes the essay by stating: “My love isn’t diminished by my inability to carry my son up the stairs, just as it isn’t diminished by the fact that I didn’t carry him inside my uterus” (128). She looks forward to the day that Kahlil and her will be able to connect more through conversation. She also takes pride in knowing that Kahlil has “no doubt” she is his mom.

Elsa Sjunneson begins this essay by recalling her father’s death from AIDS. Next, she recalls the first time she was sexually assaulted. Italicized instructions on how to fold a paper crane are interspersed throughout this essay. Each of these sections also includes commentary on traumatic moments in her life: “Fold the paper in half by taking the top corner and folding it to the bottom corner, as you learn what it feels like to be angry, as you learn the world isn’t just, because there is no cure for the thing that will kill your father” (131).

Sjunneson writes that, because she is a disabled woman, the people around her (and society at large) expect her rage to be “small,” “manageable,” and “pretty.” “When I fold down my rage, I fold down myself. I make myself smaller, prettier, easier to consume. But I am not easy to consume. I am a deafblind woman. I am angry at the world” (131). She recalls being infantilized by strangers because of her disability.

With time, Sjunneson learns to “deal with” her rage and horror at how she is treated. Instead of making herself “small,” she uses her rage as “fuel” and a “weapon.” She writes that, while her rage once caused her to lash out and alienate others, she has learned to use it strategically. The thing that defines her most is not her rage but her “radical vulnerability.” She shares her feelings of vulnerability as another way of making herself known.

Radical vulnerability is a synthesis of Sjunneson’s anger and her desire to be understood. Her focus also shifted from simply being angry to communicating to the world why she is angry. One way that she practices radical vulnerability is through writing, where she frankly discusses ableism, prosthesis, and her father’s death. The essay concludes with the final instruction on crane folding: “finish the crane, but know there are more to make, more stories to tell, more birds to set free” (135).

This essay opens with a lavish description of Selma Blair’s red-carpet ensemble at the 2019 Vanity Fair Oscar party. This includes her “black customized cane, complete with a real pink diamond” (136). Zipporah Arielle, a disabled woman in her mid-20s, recalls the profundity of watching Blair at the event.

The Oscar party was Blair’s first public appearance since her multiple sclerosis (MS) diagnosis. When Blair cried and commented: “It just took so much to get out” (136), Arielle was deeply moved. As a sufferer of chronic fatigue herself, she strongly related to the sentiment.

Arielle grew up watching Blair’s movies and found it “incredibly meaningful” to see a celebrity she admired openly embrace disability. She praises Blair for her ensuing interviews and appearances, which have made the public more aware of disability and chronic illnesses. Blair speaks openly about struggling with MS symptoms and seeking a diagnosis. She also continued to work after her diagnosis, helping to refute the assumption that an MS diagnosis is a career-ending “tragedy.”

Arielle praises Blair for incorporating her cane into her glamorous fashions rather than hiding her disability or her mobility aid due to stigma. Arielle herself admits to habitually hiding her cane in photographs and even tossing it out of frame because she worries it will be unsightly. She concludes the essay by writing that she won’t do that anymore.