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

“You know, Harriet, there were some very pleasant Nazis. They say the SS guard went home and played on the floor with their children every night.”

This quote from Johnson’s sister refers to the complex dimensions of what it is to be “evil” or otherwise monstrous. Here, she overtly compares Peter Singer to the Nazis. She argues that, even though many Nazis were complex people who could be “pleasant” and kind under certain circumstances, this does not make their actions any less violent or indefensible. The same is true of Dr. Singer; he advocates for the euthanasia of disabled people.

“It was Ki’tay’s ability to sit with and actively love oppressors and those who were violent towards him and marginalized communities—most often solely because they do not adhere to that which has been deemed ‘normal’— that truly set him apart. He could breathe life and love into those people within mere moments of making their acquaintance. This is what makes him special—reminiscent of what some here may call a prophet; others, a wise man; others still, a light or sage.”

This essay follows directly after Johnson’s essay about her discomfort with Dr. Singer, his genocidal views, and his pleasant manner. Much of her essay is spent on the logical reasoning and strategy around debating Singer. Ki’tay’s attitude towards “oppressors” presents a counterpoint to Johnson’s approach. Where Johnson hunts for a rational way to square her paradoxical thoughts and feelings, Ki’tay is able to “actively love” people like Singer. Ki’tay’s attitude is not suggested to be superior or inferior to Johnson’s; they are simply in conversation with one another.

“I used to find the existence of algebraic and geometric formulas that explained beauty oddly comforting, because then at least there was an ideal—something to work toward. But art isn’t necessarily about beauty. Art is supposed to make you feel something and I began to realize my appearance was my art. My body, my face, my scars told a story—my story.”

Here, Henley claims ownership and appreciation of her body. Throughout her life, she struggled with shame and dissociation around her appearance; by recontextualizing it as “her art,” she is able to cherish it both from an aesthetic perspective and as something that is uniquely her own.

“At home, conversations about my nystagmus were sparse, except when discussed as a thing that God would ‘deliver me’ from. I received conflicting messages: God does not make mistakes; everything God creates is perfect; God corrects things that are imperfect. With these messages, my nystagmus became a huge source of shame. I was praying a lot, asking God to heal me so that I could have some sort of normality.”

Eric-Udorie describes the double standards and contradictions she encountered in religious spaces. Rhetoric like this was used to dismiss her, her experiences, and her condition. These lines of thinking imply that she should not discuss or question her condition because that would question God’s will, and if God does not “correct” her condition, it is because she didn’t earn deliverance through sufficient piety.

“The implication—the idea that I could have a disability—was so momentous that I didn’t say anything for a while. I was learning to navigate the world as a young black woman, and I did not feel I had the right to claim a disability.”

Here, Eric-Udorie approaches “disabled” as an identity she felt she had to earn through suffering. The feeling that one’s disability must be sufficiently severe before it “counts” is common among disabled people.

“When I tell people I am a cyborg, they often ask if I have read Donna Haraway’s ‘A Cyborg Manifesto.’ Of course I have read it. And I disagree with it. The manifesto, published in 1985, promised a cyberfeminist resistance. […] Instead, it has been so effective at erasing disabled women that even now, in conversation with many feminists, I am no longer surprised that disability does not figure into their notions of bodies and empowerment.”

This statement introduces some ideological tension. Though Haraway and Weise are both feminists with vested interests in intersecting identities, their individual modes of feminism are incompatible.

“When we were in institutions, we didn’t have a voice. We were thought to be incompetent, so no one took the time to teach us things. But people can accomplish great things with support. Having an intellectual disability doesn’t limit what you can contribute. Being put in institutions limits what people can do and guarantees that people will be dependent for the rest of their lives.”

Thornton presents compulsory institutionalization as a stripping of one’s rights. He also describes it as an emotionally deadening experience that discourages personal growth. He emphasizes that, with adequate support and personal freedom, intellectually disabled people are capable of contributing to society just like anyone else.

“‘I had a stroke,’ I said. ‘I had cancer,’ I said. The responses were usually the same. An awkward pause. Perhaps an apology. If I went a little further, if I gave more of myself, then something else would happen. ‘I get so tired now,’ I said. ‘My mother was exhausted all the way through treatment,’ my co-resident said. ‘I used to be ashamed of my scar,’ I said. ‘So did I,’ the nurse said. She lifted up her hair and smiled at me. Ran her fingers across the pink, puckered scar that traveled up her spine. I reached up and brushed mine. I shared my stories. I received others in return.”

Here, Cejas shows the difference between sharing the rote fact of her disability versus sharing her story about being disabled. While one is an alienating experience for both herself and for others, she finds that being open and honest about what she’s been through can help her connect to others and determine the way they see her.

“The reality of disability and joy means accepting that not every day is good but every day has openings for pockets of joy.”

Brown writes that prizing and centering joy does not mean pretending that suffering doesn’t exist. She presents a careful balance between accepting negativity without letting it consume her.

“‘I’m blind,’ my male classmates would say, laughing as I angrily slapped their hands away. ‘How was I supposed to know your boobs were there?’ They might have been blind, but they knew exactly what they were doing. And I didn’t like the way strangers, in the name of helping a blind girl, would cop a feel. They’d slip an arm around my waist, or curl their hands around my neck, or pat my ass, or trail their fingertips at the skin under my shirt— Good Samaritan gropers.”

Scott writes that being a disabled woman poses dangers for her in both disabled and general/nondisabled spaces. Nonblind men use her perceived weakness as a blind girl to take advantage of her, and blind men use their disabilities as a smokescreen that lets them get away with sexual assault.

“Disabled voices like Wang’s and others are needed to change the narratives around disability—to insist on disabled people’s humanity and complexity, to resist inspiration porn, to challenge the binary that says disabled bodies and lives are less important or tragic or that they have value only if they can be fixed or cured or be made productive.”

This passage presents Reaume’s counter story challenging mainstream tropes and ideas around disability. She has identified that disabled people are often viewed as symbols rather than people. Disabled people who “overcome” their conditions in order to work are used to reinforce the idea that all people—disabled people especially—have to justify their existence by being “productive.”

“If this bill passes the legislature, it heads to the governor’s desk. The current governor, Greg Abbott (R), is a wheelchair user. While the antichoice movement hails the bill as ‘saving our community,’ the reality is that legislation like this strips from everyone, particularly people with disabilities, the right to decide what happens to one’s own body. Yet again, what I see is a man exerting control over someone else’s body, and it needs to stop. The disability community is not a football to be punted for the sake of political points, but it has indeed been relegated to that role by both Republicans and Democrats.”

Here, Cokley confronts her ideological differences with Governor Greg Abbott, whom she expects will approve of SB 1033. Though both are disabled, Cokley sees his support of this bill not as a protection of disabled lives but as a subjugation of women and their bodies.

“For some people with degenerative conditions, the knowledge of their lived experience may lead them to be staunchly pro-choice. Others of us, like the deaf and dwarfism communities, often see our disabilities as less a diagnosis and more a culture. We celebrate the birth of future generations regardless of any health-related side-effects.”

Though Cokley rejects Abbott’s “pro-life” stance as an exertion of control over others’ bodies, she recognizes the good-faith reasons other disabled people might support SB 1033.

“It’s hard to be a pro-choice disabled person who understands that believing in bodily autonomy means you have to support the idea that other people—your friends, your peers, your siblings—may choose to abort a baby because their child could be like you. Yes, it’s hard. But that’s why it’s a conversation we have to have, because if we don’t, decisions about our futures get made by others, without us.”

Cokley acknowledges that, while it is deeply upsetting to know that parents can and will abort babies solely because “their child could be like [her],” she believes bodily autonomy is too important to sacrifice. She also believes that, regardless of how painful it is, disabled people must elect to have these conversations, or else they will cede control of their bodies and their cultures’ futures.

“To be disabled is, in this world, to experience a problem of body and/or mind so severe that it distinguishes a disabled person from a nondisabled person.”

This definition frames disability as an internal “problem” that creates cultural and social separations between disabled and nondisabled people. Sheppard clarifies that this is true “in this world,” suggesting an amalgamation of the medical and social models of disability.

“A lot of folks equate the manic energy of being bipolar with the creative spark that drives artists to brilliance. They point to so many great artists in history who lived with mental illness and say ‘There it is, that energy, that’s what made them great!’ Except for so many artists, mental illness didn’t make them great. It made them ill. And if they weren’t careful, it made them gone.”

Kessock recognizes that the cultural myths around mental illness—namely, that mania and suffering “make” great artists more creative—dissuaded her from seeking treatment for her Bipolar II.

“The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, the terminal, of relapse and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently— or not so silently— at the calm straightforwardness of those who live in the sheltered space of normative time.”

In this section, Samuels identifies the heart of crip time: The experience of chronic illness and/or disability resists being described linearly. The way symptoms evolve and change is unique to each individual. Recovery and progression do not always follow predictable trajectories, which can make the temporal language “imposed” on disabled people frustrating and inadequate.

“I think the line between technology and assistive technology is blurry, right? Everybody who has an iPhone can use Siri, and Siri is a form of assistive technology for a lot of people with disabilities… When more people think of it as a standard feature, it could only help everyone.”

This is a remark from Alice Wong on the Disability Visibility Podcast. Here, she notes that the difference between assistive technology and technologies used by nondisabled people is sometimes hard to identify. Technologies geared toward assisting disabled people may also be useful to nondisabled people. Likewise, broadly marketed technologies may be particularly useful in meeting disabled people’s needs.

“Lay is not just a role model; he is a dwarf role model.”

Here, Grant proudly claims his dwarf identity. By declaring Lay a “dwarf role model,” he argues that Lay’s dwarfism should be highlighted and celebrated as part of him. He, like other historical abolitionists, is a universal role model. However, just as Harriett Tubman is hailed as an example of Black and female excellence, Benjamin Lay should be held up as an example of dwarf excellence.

“The phrase ‘differently abled’ suggests that we are the locus of our disability when we are, in fact, disabled by social and institutional barriers.”

This is a rejection of the phrase “differently abled.” Though this phrase was coined and popularized in an attempt to be politically correct, it is often criticized for being patronizing. Here, the Harriet Tubman Collective criticizes it for a different reason entirely: they argue that it implicitly blames disabled people for their limited functioning while ignoring the external factors that impede them.

“We share an empathy that only two people with the same condition can feel. We know what the other person is going through on bad days; we know how exasperating it is to explain invisible symptoms to doctors only to face skepticism. And we know all too well what it’s like to be immobile in an ever-moving world.”

Hill writes of the special connection he shares with his significant other. Their shared experience with the same disability has helped them to connect deeply and uniquely.

“[…] the reason to add disability justice to social justice is not just because it’s another element of diversity or representation, but rather because disability justice (and disability itself) has the potential to fundamentally transform everything we think about quality of life, purpose work, relationships, belonging. As a new colleague Ria DasGupta said in a meeting about cripping the college campus this week, ‘We can no longer afford add-and-stir politics.’”

Here, “add-and-stir politics” is an epithet for identity politics at their worst. Rather than include disabled people in the checklist of identities used to achieve adequate levels of diversity, Milbern and her colleague, DasGupta, agree that the disabled perspective adds illuminating dimensions to the way we talk about justice and human rights in general.

“It is very rare, as a disabled person, that I have an intense sense of belonging, of being not just tolerated or included in a space but actively owning it; ‘This space,’ I whisper to myself, ‘is for me.’ Next to me, I sense my friend has the same electrified feeling. This space is for us.”

Here, s. e. smith describes how powerful it is to be in a space created for people like her by people like her. Her experiences as a disabled person make her feel sidelined and othered in nondisabled spaces (the majority of spaces one can occupy). Being in a space that explicitly and implicitly welcomes her body is a rare treat rather than the norm.