Cover of Disability Visibility in front of a rainbow background.

Reclaiming Disability Space in an Ableist Society: A Review of Alice Wong’s Disability Visibility

Former president Donald Trump publicly mocked and disparaged disabled people, weakened the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA), and cut the payroll tax to make Social Security Disability Income run out by 2022. Writing for The Atlantic, Jeffrey Goldberg interpreted that “Trump is deeply anxious about dying or being disfigured, and this worry manifests itself as disgust for those who have suffered.” Current social turmoil, combined with Trump’s disgust for disabled people, fosters the right conditions for a new anthology by disabled authors.

Headshot of Alice Wong
Alice Wong (she/her) is a disabled activist, media maker, and consultant based in San Francisco and the Founder and Director of the Disability Visibility Project. (Courtesy Alice Wong and Eddie Hernandez Photography)

Disability Visibility: First-Person Stories from the Twenty-First Century, a collection edited by disability activist Alice Wong, is a cornucopia of first-person accounts of experiencing disability in all forms – and intersecting disability with race, class and gender – in an ableist society. This anthology differs from similar works because it is written by people with disabilities and serves as an example of writing in “crip space” and “crip time.” Author and disability activist s.e. smith identifies “crip space” as physical and social space created by and for people with disabilities, and whose significance is explained below.[1] Disability activist Ellen Samuels defines “crip time” as daily lived experiences in light of having a disability thanks to self-accommodation and self-advocacy.[2] As an example of crip space and crip time, Disability Visibility reinforces the need for national discourse on the significance of and meaning behind disability rights today, especially when the former president actively supported legislation disenfranchising disabled people.

This anthology challenges assumptions about disability and its stories are relatable to people with and without disabilities through shared experiences. Under the ADA, a disability is any mental or physical impairment substantially limiting someone in one or more major life activities, including caring for oneself, performing manual tasks, walking, seeing, speaking, hearing, breathing, working, and learning.[3] Disability represents a grey area in US society. Despite being the largest minority group (one in four people has at least one disability), disabled people are stigmatized, marginalized and disenfranchised by ableist social norms (implicit beliefs positively valuing able-bodied and -mindedness) that reinforce ableist laws.[4]

Since ableism is not always evident through explicit discrimination, even well-intentioned people may perpetuate ableism in their own communities and homes. Karolyn Gehrig states, “You can spend a lot of time with someone who both others and adores you.”[5] By “othering” disabled people, internalized ableism insidiously prevents people from imagining life with a disability, as something unrealistic or unimaginable. At best, ableism objectifies disabled people as inspirational solely on the basis of their disability, what disability rights activist Stella Young calls “inspiration porn.”

Disability discrimination is systemic; we limit our view of someone’s life when we discount or ignore their disability, enabling seclusion, isolation, and alienation by reinforcing shame and stigma.[6] Wong’s anthology routinely highlights how nondisabled people create the social spaces for disabled people to inhabit, including the language they use, the meanings associated with disability, the policies that affect their lives, and even their health and life outcomes. Cultural assumptions of individualism in ableist society implicitly frame accommodating disabled people as a burden or extending an olive branch to people who would not survive on their own. There are multiple costs of being disabled and multiple sacrifices disabled people make to appear normal according to ableist standards to avoid social costs.[7] Ableism persists because people unfamiliar with the challenges of being disabled support disability legislation that implicitly enforces ableism. That is why “crip space” is necessary.

The presence of crip space implies that ableism fails to acknowledge disabled people’s humanity, and neglects to recognize that disability is only one aspect of someone’s identity. Crip space maximizes one’s capacities by acknowledging that disability is only one facet of identity, so in contrast to ableist spaces, crip space enhances other aspects of identity in light of disability.

Cover of Disability Visibility, edited by Alice Wong.
Disability Visibility, edited by Alice Wong, was published in June 2020. (Courtesy Penguin Random House)

Disability Visability is rife with examples of how ableism causes non-disabled people to ignore disability-based discrimination and instead pushes the implicit message that disability must be overcome or eradicated for someone to have a meaningful existence. Disability rights activist and lawyer Harriet McBryde Johnson reminds us that “the presence or absence of a disability doesn’t predict quality of life,” a point excluded from ableist thought.[8] While debating with Princeton professor Peter Singer over whether disabled people should be allowed to even exist, Johnson emphasizes that “woven throughout the talk is the presentation of myself as a representative of a minority group that has been rendered invisible by prejudice and oppression, a participant in a discussion that would not occur in a just world.”[9]

I have direct experience with the burden of proof that disabled people can have a meaningful life and that people with disabilities are no worse off than people without. When I first moved to Texas, people outright told me my disability was proof the devil was inside me or that my disability exists because I had not accepted Jesus Christ as my lord and savior. Disability correlated with moral impurity needing eradication.

Assumptions about quality of life serve as the backdrop for the United States’ history with eugenics. Rebecca Cokley, Director of the Disability Justice Initiative at the Center for American Progress, identifies how bodily autonomy of disabled people remains a contentious matter since Buck v. Bell (1927), the Supreme Court ruling that the forced sterilization of people with disabilities does not violate the Due Process clause of the 14th Amendment.[10] (To date, the US Supreme Court has not overturned its ruling.) Furthermore, supporting legislation for bodily autonomy, ranging from pro-disability medical support to pro-choice abortion bills, suggests non-disabled people may choose to abort a fetus screened to have the same disability as a disabled family member.[11]

Elsa Sjunneson describes frequent experiences with ableist family members who regard her as incapable of taking care of herself or helping others, or contributing to the wellbeing of society.[12] Reyma McCoy McDeid highlights the social pains that come as a consequence of poor understanding by larger society about neurodiversity. Sjunneson and McDeid, and all of Wong’s contributors, exemplify creativity and resilience against ableism. Sjunneson is motivated by her rightful rage to endure and survive ableist attacks on her personality and character while bringing to attention her humanity in a society that would rather deny it. McDeid turns “lost cause” traits – behaviors ableist people correlate with being a waste of time and resources – into something beneficial for others.[13]

Like Sjunneson and McDeid, I am tired of being compared to normal people. I have an ableist and opinionated relative who claims disabled people waste resources better used by non-disabled people, and that non-physical disabilities like learning disabilities are excuses for laziness. Upon learning that I have a documented but nonapparent disability, my relative suggested self-expiration through suicide. Finding out that I still am (and will always be) high-functioning autistic, my relative exclaimed, “I thought you were cured!” and said the life-changing experience of my Landmark College education was a total waste.[14] Some “normal” people regard my disability as an opportunity to denigrate me, even in academia.

Diana Cejas suggests isolation looms overhead until you finally meet someone who has had the same experiences of living with a disability. “It was his story,” Cejas notes, “but I knew all the words. […and] I knew that I wasn’t alone.”[15] AH Reaume describes the pure joy that comes from meeting someone else like you – disability and all.[16] I readily relate to Cejas and Reaume’s experiences because I have met only a handful of others like me. I liken my life experience to a lone zebra in a giraffe exhibit at a zoo. I am like the zebra since I am routinely around giraffes (“normal” people, whatever that means), and sometimes even horses (other people with disabilities, but not the same disability as myself). Horses and I may look similar, but they lack my stripes. I have been told, “You pass for normal,” implying that “authentic” disabilities are visible and invisible or less apparent disabilities are less worthy of the title.

In aggregate, Wong’s anthology argues that the social system is broken when its power structure makes people compete for needed goods, including safe spaces dedicated solely to disability. This work calls for changing the disability narrative, breaking physical and social isolation, and exchanging ideas and plans to act in solidarity when systems of power threaten ourselves and each other because, as contributor AH Reaume stresses, we are all interconnected – disabled or not – despite ableist society’s insistence on individualist conceptions of what it means to be human.[17]

Discourse on diversity routinely omits disability, so the needs and experiences of disabled people remain absent from contemporary social movements like Black Lives Matter, Time’s Up, and Me Too. We need more useful public discourse on disability and its intersectionality with race, class, and gender. We should become comfortable with the friction between ableist expectations and being disabled because our reactions to initial discomfort only perpetuate ableism. We can find comfort by realizing that disability rights’ successes are our own thanks to Ellen Samuels’ notion of “crip time,” mentioned above.[18] Not everyone will understand disability successes, especially “abled” people, so Disability Visibility serves as a resource to help all peoples to get to know crip space, and thanks to Alice Wong and her contributors, in crip time.

Notes

    1. s. e. smith, “The Beauty of Spaces Created for and by Disabled People,” in Disability Visibility (Penguin Random House, 2020), 273.
    2. Ellen Samuels, “Six Ways of Looking at Crip Time,” in Disability Visibility, 189-196.
    3. The ADA confirms that even temporary impairments, like a broken bone, are also disabilities.
    4. Centers for Disease Control and Prevention, Disability and Health Infographics (Washington DC: Department of Health and Human Services, 2018), 1.
    5. Karolyn Gehrig, “Time’s Up for Me, Too,” in Disability Visibility, 245.
    6. Eugene Grant, “The Fearless Benjamin Lay,” in Disability Visibility, 230; Mari Ramsawakh, “Incontinence Is A Public Health Issue,” in Disability Visibility, 176.
    7. Karolyn Gehrig identifies how some states still allow subminimum wage for work performed by disabled people. Gehrig, “Time’s Up for Me, Too,” 246.
    8. Harriet McBryde Johnson, “Unspeakable Conversations,” in Disability Visibility, 9.
    9. Johnson, “Unspeakable Conversations,” 17.
    10. Rebecca Cokley, “The Antiabortion Bill You Aren’t Hearing About,” in Disability Visibility, 163.
    11. Cokley, “The Antiabortion Bill You Aren’t Hearing About,” 161.
    12. Elsa Sjunneson, “How to Make a Paper Crane From Rage,” in Disability Visibility, 134–40.
    13. Reyma McCoy McDeid, “Lost Cause,” in Disability Visibility, 197–204.
    14. Landmark College, located in Putney, VT, is the premier college for students with learning disability and who ultimately learn differently.
    15. Diana Cejas, “Taking Charge of My Story as a Cancer Patient,” in Disability Visibility, 109.
    16. A. H. Reaume, “Why My Novel is Dedicated to My Disabled Friend Maddy,” in Disability Visibility, 149–58.
    17. Reaume, “Why My Novel is Dedicated to My Disabled Friend Maddy,” 149–58.
    18. Ellen Samuels, “Six Ways of Looking at Crip Time,” in Disability Visibili, 189–206.

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