There are 61 million people in America living with disabilities. That’s one in every four people. While the wheelchair symbol is the most common representation of disability, many disabled people do not utilize a mobility device. (Some even have disabilities that are not visible at all!) Missing from society are everyday images of those millions of disabled people living their best lives — and that’s where Alice Wong’s anthology “Disability Visibility: First-Person Stories from the Twenty-First Century” makes its rare and stunning appearance, with 37 essays by authors who are BIPOC, queer, trans, and/or activists, all with something unique to say about disability.
Wong, a disabled Asian American woman and activist, grew up in Indianapolis in the ‘70s and ‘80s. She was a sophomore in high school when the Americans with Disabilities Act (ADA) passed, legislation that prohibits discrimination in several key areas, including employment, transportation, and access to publicly available spaces. Noticing the lack of representation, she clipped and collected magazine articles and stories about disabled life. Twenty-four years later, in partnership with StoryCorps, she began the Disability Visibility Project®, a campaign to collect the oral histories of disabled people for the purpose of archiving them at the Library of Congress.
Currently at 140 oral histories, what began as a one-year project in 2014 would become the basis of an anthology released in June of this year, just in time to mark the 30th anniversary of the ADA. The range of essays oscillates from serious, starting with Harriet McBryde Johnson’s account of debating a Princeton philosopher who set his efforts toward advocating for eugenic-esque practices following prenatal diagnosis, to an awe-inspiring story of how Wanda Díaz-Merced created a way to “see” the stars as a blind astronomer.
When I asked Wong about her role as editor, she told me that a fuller representation of disability is important to both non-disabled and disabled people, yet noted that her anthology is just a piece of that puzzle: “It is not definitive; it is not complete; it is a specific duration of stories that I feel haven’t been heard or need to be heard. (…) Though, here we are in 2020 and, you know, things are a little better, but not really. I hope readers will discover it and say ‘I never thought of that’ or ‘I want to learn more.’ The hidden agenda of the book is to get people excited. That’s the other reason why I share a reading list [at the end of the book].”
The community that Wong brings together, whether through oral histories or in the anthology, is one that defies assumptions about disabled people. In the introduction to the book, Wong shares, “Storytelling can be more than a blog post, essay, or book. It can be an emoji, a meme, a selfie or a tweet. It can become a movement for social change.”
A couple of hashtags of prominence: #CripTheVote (which queried 2016 and 2020 Democratic candidates about their policies on disability) and #CripLit (which identifies disabled authors and their books). But that is just the beginning. This community is creative, political, and what Wong calls “magic.” For instance, Patty Berne — a queer Japanese Haitian woman whose essay on climate change is included in the book — is the executive director of Sins Invalid, an incubator based in Oakland, CA, for artistic performances and workshops by disabled creators.
Even though disability as an identity cuts across race, gender, class, etc., Wong notes that it is still difficult to gain mainstream or even intra-community acceptance as a person of color with a disability. Yet in 2020, utilizing an intersectional framework — recognizing how aspects of one’s identity “intersects” to create a unique combination of privileges and oppressions — is more important than ever.
“Especially in the fight for Black lives, there have been a lot of Black disabled people who have really just been doing the work for years,” Wong says. “Talking about the intersections of mental health, disability and police violence. There is a statistic that says quite a substantial number of Black people who are killed by police have mental illness [or] physical disability, but those aspects of their identity are almost secondary.”
Wong adds, “In terms of mass incarceration, there are a lot of people incarcerated not just in prisons, but in other institutions, like psychiatric hospitals. They are disproportionately poor and people of color. That is white supremacy intertwined with ableism.”
The first time Wong wrote about the intersections of her Asian American and disabled identity was in an essay published by Amerasia. She discusses her youth and how her family and doctors pushed her to maintain her ability to walk, to the point where she became an “Angry Asian American Disabled Girl.”
“I am the daughter of immigrants. I am the firstborn. I do believe that being [the] firstborn really was good for me. First of all, my parents did not treat me any different. If you are the firstborn, then you’re in charge; you are the most accountable, the most disciplined, like disciplined by parents for sure. I did not escape any of that because of my disability.”
She remembers explaining permission slips to her parents — a routine part of so many generational dynamics for immigrant families. All of this increased Wong’s independence and autonomy, and she learned to become a self-advocate, whether with doctors or at school.
Moreover, she recalls, “Anything I needed in terms of time, in terms of help, [my parents] were there. That was never questioned. They didn’t say stuff like ‘I love you,’ but they were there by showing up. Things like my mom coming with me on field trips because I needed help, since this is before you could get assistance [for disabilities] in the classroom.”
When Wong began using a wheelchair, her parents built a makeshift ramp for their house and bought a modified van. “That must have been so expensive for them, but they did it because I was part of the family,” Wong says. “They never made a big deal about it; they just did it. Our family vacations and road trips were accessible: We went to Disneyworld, not skiing or camping.”
Wong had to share this “subtle Asian trait” moment with me: When she showed the anthology to her mother, in line with classic Asian American burns, her mother said, “But you edited it, you didn’t write it.” We both laughed, knowing that Wong’s individual accolades include everything from gaining a graduate degree to appearing on W. Kamau Bell’s CNN series “50 Shades of America,” and most recently, being featured on the cover of the September 2020 issue of “British Vogue” alongside other activists, including the abolitionist Angela Davis. It is a resume that even a “tiger mom” would be proud of.
One of the contributors to Wong’s anthology, Sandy Ho, directly speaks to the experience of being disabled in an Asian American household in her essay. Ho is quite active in the community and, in 2016, founded the Disability and Intersectionality Summit — a conference organized by disabled activists from across the country to uplift marginalized disabled people and issues they are passionate about. In “Canfei to Canji: The Freedom of Being Loud,” Ho describes the stigma of being disabled in different spaces, whether within the family or in public space, both in the United States and back home in East Asia.
Her disability, like Wong, was not treated as remarkable. “At times I do remember hearing my mom talk with other aunties or her friends about how maybe I should have an ‘easier’ life because of the additional things I dealt with specific to my disability,” Ho recalls. “My mom always pushed back and insisted that I was no different from my brothers and my classmates in school. I think this comes from the refugee and immigrant mindset my parents had (…) I was raised by people who knew what it was like to be ‘the only’ or ‘one of a few’ — it might not have been disability experiences, but it is the experience of being someone who persists.”
Yet not all people with disabilities may have that experience, which is why Ho started Letters to Thrive, a space where women with disabilities write letters to their younger selves. That project began when Ho was working as a program coordinator for young women with disabilities between the ages of 14-26. She set up mentoring relationships for the young women to connect with older women with disabilities. It is a unique programming model because, as Ho points out, “To this day, there are not enough examples of ways of being as a disabled adult.”
Model minority myth and disability
As a queer Asian American woman, Ho shared that the model minority myth privileges capable minds to the detriment of mental health, a huge problem within our community. Her own experience with this mind-body dualism is notable because her unique experience as a disabled person truly highlighted this lack.
“One thing that was harmful to hear growing up was ‘There is nothing wrong with your mind; it’s just your body.’ And this was used in a way to push me to succeed academically.” She adds, “But at the same time it also meant that when I was eventually diagnosed with severe depression, anxiety, and had struggled with self-harm for years, and later on was diagnosed with ADHD — it was never something that I was ‘equipped’ to manage or even talk about in my family. More broadly, we see how pitting one disability over another — as more or less ‘capable’; more or less ‘deserving’ to be listened to or to be taken seriously; more or less ‘serious’ — has dire consequences on our community. The model minority myth says that unless your body measures up to these standards, you are not going to succeed and moreover, you’re undeserving of even being a part of our Asian American community.”
Wong also has felt the weight of the model minority stereotype, even from within the disability community. People often believe that she, as an Asian American woman, does not struggle, always receives the necessary accommodations, and/or that she has a lot of privilege due to her race. “I do have privilege as an Asian American, [but] I still have a lot of baggage like everyone else. In the disability community, there are still racist microagressions and explicit discrimination. It might be positive discrimination, rather than negative. But still it is like, wow, you don’t understand what it means to be Asian American.”
Asian Americans and people with disabilities as separate minority groups have a huge commonality. Both are broad labels aiming to describe very diverse populations. “There are similarities between being Asian American and disability; both are such monoliths with such diversity,” Wong says. “There are just so many different experiences that are lumped together. When you lump us together, you flatten out what makes us who we are — and that harms us as well.”
Disabled people are often put on the bottom of the totem pole when it comes to health care, due to their bodily state being considered a pre-existing condition. In 2020, ventilator rationing at the height of COVID-19 equals direct discrimination against people with certain disabilities. Societal and medical devaluation forms the basis of these ableist (i.e., privileging those with able bodies and minds) beliefs, institutions and social constructs. Making visible the interrelational, unique and diverse lives led by disabled people is the first step toward valuing people with disabilities.
Both Wong and Ho provide younger generations of disabled people (like my son) a broad new spectrum of stories, role models and horizons. The beauty, joy and struggle captured by Wong in both the anthology and her ongoing project are so vital to reversing the misconceptions of what disabled life looks like and dismantling why we associate ability — particularly the ability to participate in economic reproduction — with worth.
Ho summarizes this sentiment best, “It is important to remind people in our community that we do not exist to be someone else’s check box, someone else’s moral good, or kind deed. Our community is vibrant and deserves to be supported and given space to exist as we are!”
Grab a copy of Disability Visibility: First Person Stories from the 21st Century at your local bookstore or online. Alice Wong (she/her) is a disabled activist, media maker and consultant based in San Francisco. She is the Founder and Director of the Disability Visibility Project® (DVP), an online community dedicated to creating, sharing and amplifying disability media and culture. You can find her on Twitter: @SFdirewolf.
Credit: Eddie Hernandez Photography