Around the age of 3 or 4, Harriet McBryde Johnson sits in front of her family’s television set and thinks, “I will die.” The thought comes to her after an advertisement for the Muscular Dystrophy Association flashes across the screen, one that depicts a small boy’s journey from running bases as a baseball player to using a wheelchair and then to bed, one he never rises from. Born with a neuromuscular disease, this commercial, and then a telethon around the age of 5, are Johnson’s first encounters with depictions of disability in mainstream media, as she writes in her memoir Too Late To Die Young. From that first scene, the line I will die, I will die, I will die, serves as a sort of chorus, one that punctuates Johnson’s progression from kindergarten student to law school graduate to protestor and beyond. Johnson reclaims the line; as she moves through life, I will die is no longer a source of fear, but rather a lyric of defiance.
The negative representations of disability Johnson encounters in childhood do not leave her in adulthood, particularly in relation to her wheelchair. She protests against entities like Jerry Lewis, who claims, in a letter penned for Parade Magazine, that wheelchairs are a form of “steel imprisonment,” a “dystrophic child’s plight.” When, being photographed for The New York Times Magazine, the photographer asks to remove Johnson’s chair from the frame, saying that Johnson looks “frail.” The photographer argues that Johnson will look “beautiful and powerful out of the chair,” “brave,” but Johnson advocates for herself.
Johnson’s memoir reveals a litany of ableist assumptions directed toward her and other disabled people, as well as the emotional and physical tolls these perpetual violences take on her throughout her life. Harmful messages, distributed through television ads, telethons, looks others give her while she’s out, snide comments, the highly inaccessible way our world is physically built, seep so much into her consciousness that at one point, she sees wheelchair dancing as being “undignified.” It takes her years before she reckons with her own beliefs, questioning whether they are borne from what others have told her about her disability or about what she herself has experienced in her body. Then, she explains the joy that comes from moving through the world in her wheelchair, saying, “we can in our own way play with sight and sound, combine rhythm and form, move in our chairs and with our chairs, and glide and spin in ways walking people can’t.”
Though Johnson’s life experiences are unique to her, the underlying themes within her book resonate far beyond. I saw myself reflected in some of her passages, particularly when I thought back to my own experience using a wheelchair for a few months as a result of neurological symptoms, during which time I felt a sense of shame. Johnson’s reckoning with her own internalized ableism helped me realize that my feelings came not from my use of the wheelchair, which allowed me to move through the world, often with great joy, but from how I thought others might perceive me.
Her memoir, too, encouraged me to ask questions: How does pervasive ableism affect the way our society continues to be architected? In what ways have disabled people been represented in media and how can representation continue to evolve so that disabled people have more agency? How are invisible disabilities treated versus visible? What have other disabled people’s experiences been engaging with different accessible tools and technology? The essays curated here cover an array of topics related to those questions, as well as delve into intersections between disability and race, class, and gender.
1. Common Cyborg (Jillian Weise, September 24, 2018, Granta)
Jillian Weise writes against Donna Haraway’s ‘A Cyborg Manifesto,’ exposing numerous flaws in Haraway’s argument, namely, the fact that Haraway neglects to acknowledge disabled people. Weise discusses what it means to claim a cyborg identity, and how disability is treated by a group of people she names ‘tryborgs,’ who “preach cyborg nature,” but “do not actually depend on machines to breathe, stay alive, talk, walk, hear or hold a magazine.”
They like us best with bionic arms and legs. They like us deaf with hearing aids, though they prefer cochlear implants. It would be an affront to ask the hearing to learn sign language. Instead they wish for us to lose our language, abandon our culture and consider ourselves cured.
2. What It’s Like to Be a Disabled Model in the Fashion Industry (Keah Brown, September 5, 2018, Teen Vogue)
In this essential reported piece, Keah Brown, author of recently published The Pretty One, interviews three models with disabilities — Chelsea Werner, Jillian Mercado, and Mama Cax — and draws on her own experiences with cerebral palsy to emphasize the need for increased representation of diverse bodies in advertising, media, and modeling.
Disabled people and disabled models are still left out of most campaign ads and runway shows. This lack of representation has implications: When you go so long without seeing yourself it is easy to interpret that lack of representation to mean you’re ugly and unworthy, that you deserve to be invisible or even worse, are grotesque.
3. How Designers Are Failing People With Disabilities (Justin Rorlich, March 6, 2014, Hazlitt)
With estimates that there are 1.3 billion disabled people in the world who control more than $8 trillion in disposable income, you’d think there would be competition within the wheelchair market to create products with sleeker, more efficient design. But no, as Justin Rohrlich exposes in this piece, hardly any work is being done within big corporations to advance wheelchair design. Instead, individuals like Andrew Slorance are taking matters into their own hands.
In no other market do we force people to simply take whatever product gets shoved down their throats, especially one of this size,’ Donovan says. ‘It’s really sort of unbelievable.
You’d think that companies would have figured out long ago how to sell to a cohort this size. For some reason, it remains barely-touched.
4. The Complicated Dynamics of Disability and Desire (Lachrista Greco, April 6, 2016, Bitch)
After a teacher in middle school tells Lachrista Greco she’s using her invisible disability as a “crutch,” Lachrista begins to make a connection between her disability and how wanted she feels in relation to others. In examining harmful cultural moments like Kylie Jenner modeling with a wheelchair, essays by other disabled writers, and personal memories, Lachrista explores how disability is connected to desirability, both in her life, and in our culture as a whole.
Jenner appeared on the cover of the magazine sitting in a brass-colored wheelchair—sexy, glamorous, and blank. It’s fetishization to the nth degree for Jenner, an able-bodied person, to pose in a wheelchair wearing a black latex bodysuit. It’s “crip drag,” as comedian and disability rights activist Caitlin Wood calls it.
5. The Amputee Cyclist’s Art of Self-Repair (C.S. Giscombe, May 23, 2019, The New York Times)
After seeing a banner that reads “Do you remember when prosthetics weren’t mind controlled?” while on a bike ride through the U.C. campus, C.S. Giscombe reflects on his own prosthetic; ruminates on intersections of race, class, and disability; and confronts ableism.
He was amazed — as some people are, ‘because of your handicap’ — that I was riding at all, and as we talked and climbed the topic of touring came up and he was quick to inform me that it was a thing sadly beyond my capabilities, though we had just met. ‘Typically, disability is viewed as a tragedy,’ as my friend the poet Jennifer Bartlett has observed.
6. Products mocked as “lazy” or “useless” are often important tools for people with disabilities (s.e. smith, September 20, 2018, Vox)
After seeing a device called a Sock Slider ridiculed on John Oliver’s Last Week Tonight, s.e. smith compiles a list of other tools mocked on the internet: “banana slicers, egg separators, jar openers, buttoners, tilting jugs for dispensing liquids, and much more.” In interviewing people with disabilities, disability scholars, and compiling research about costs of attendants, smith not only makes clear that the use of these gadgets enable some disabled people to live independently, but also examines the role of the internet in spreading harmful messages.
When content mocking the disability community — like memes about ambulatory wheelchair users getting up to grab something high at the store — spread like wildfire, commentary from the affected community is rarely attached. This has a dehumanizing tendency, creating a world that rewards judgmental, snappy commentary and eliminates nuance.
7. I Love ‘Queer Eye.’ I Don’t Love The Way It Portrayed People With Disabilities. (Jessica Slice, July 26, 2019, Huffington Post)
Representations of people with visible disabilities on television are far and few between, so when the Fab Five of ‘Queer Eye’ featured Wesley, “a Black man, loving father, 30-year old community activist and wheelchair user” on an episode, Jessica Slice had hopes that the team would empower Wesley to embrace his identity as a disabled man in the same way they encourage others featured on the show. Instead, the episode falls short in many ways, which Slice chronicles in this well-researched piece.
Critically, being disabled is not a negative. It’s an identity, just like being queer, Black or Latinx is an identity. If it makes you pause to hear ‘Black, but not really,’ or ‘gay, but not really,’ then you should have the same reaction to ‘disabled, but not really.’
8. (Don’t) Fear the Feeding Tube (Kayla Whaley, May 8, 2018, Catapult)
When her mom brings up the idea of a feeding tube, Kayla Whaley recoils. She feels shame and fear thinking about such a concrete change being made to her body until she speaks with others who have gone through the surgery. This essay, in addition to providing a history of gastronomy tubes, also chronicles Kayla’s emotional turn from revulsion to delight in relation to her g-tube, and the ways in which her feeding tube allows her to connect with her body in new and surprising ways.
More than that, knowing what was inside felt like sharing a secret with myself. Seeing inside my gut, learning to recognize its patterns and moods, felt intimate in a way that was wholly unexpected but altogether a joy.
Jacqueline Alnes is working on a memoir about running and neurological illness. Her essays have been published in The New York Times, Guernica, Tin House, and elsewhere. You can find her on Instagram and Twitter @jacquelinealnes.