A few observations from community-engaged literacy and activism work as a disabled person that may echo your own experiences in attempting to foster inclusive community:
- At a recent rally for reproductive rights in Texas, as the state legislature worked to criminalize abortion access, rally organizers planned a march (that was not advertised as part of the protest) from a college campus to a city square. While the event was advertised as “accessible,” and organizers did an excellent job requiring masking and other COVID19 protocols, the route planned could not be traversed by wheelchair, taking steps and curbs and steep inclines. As the group started to march, they did not notice when they left a young activist in her wheelchair behind.
- In a digital space meant to be a discussion of neurodivergent characters in print media, a Black autistic person shared her experiences, stating that she felt there were so few representations of people like her, and where they did exist she felt they were mostly ignored both by white neurodivergent people and Black neurotypical people. A few posters responded by saying they weren’t talking about race—with claims like “that isn’t what this space is for”—garnering more attention than the Black autistic poster’s initial post. The Black autistic person left the chat.
- At a meeting for a community-academic partnership program, the directors responded to a request from a disabled community member, who had asked for Alt-Text for images that were being circulated on the group’s social media pages. A scholar began to make jokes with the director of a nonprofit org: “yeah, because I’m sure so many blind people use Instagram!” When it was explained to them, in the meeting, that many blind people do, in fact, use Instagram and other social media platforms and that Alt-Text also helps other people engage, too, the allotted meeting time had ended without any plan to resolve the issue of a lack of Alt-Text on images.
In each of these scenarios (and many similar ones), I read a lack of what I call disability literacy: in short, how nondisabled and disabled people read disability. Disability literacy tends to how we collectively and individually read and understand disabilities, our relationships to disabilities, and how disabled people engage with communities. I offer disability literacy as an inroad to reshape conversations around disability in community advocacy work.
One aspect of disability literacy is conversations about access. In each of these scenarios, disabled people aren’t just being kept out of spaces, events, or activities: it’s always about more than just the one event. I need nondisabled community organizers and advocates to understand that if you are creating inaccessible spaces, you are keeping us out of your community. How many times should disabled people be expected to show up, seeking to engage and find community, only to find that we were an afterthought—or simply not considered at all?
And, as the Black neurodivergent person’s experience illustrates, access isn’t just about disability: disability literacy means also attending to how disability overlaps with other lived experiences, relating to race, class, gender, sexuality, and many other life experiences.
I continue to learn to do this myself, from disability justice, an anti-oppressive framework created and lead by “disabled people of color and queer and gender nonconforming disabled people” (Skin, Tooth, & Bone 18.) At the center of disability justice is an understanding of how systems of oppression interlock and are interwoven. As Shadya Kafai writes about the creation of “crip-centric liberated zones,” “Everyone must engage in the difficult, tangled, and often repetitive process of unlearning the systems of oppression that they bring with them” (64). Those doing the work of community organizing must engage with disability in its wholeness and complexity—not just white, cishet disability. A space that is accessible to only white or cishet or affluent disabled people isn’t an accessible space. A space where white, cishet, or otherwise privileged perspectives are the only ones given space is also not an accessible space.
But disability literacy goes beyond access, recognizing that inaccessible events is a symptom of ableism and interlocking systems of oppression and not the cause. Don’t misread me and think that the point of disability literacy is you should involve disabled people because it’s nice. Too often, disabled people encounter situations where someone expects us to be eternally grateful, to smile and give their event some imaginary disabled seal of approval, because they made some gesture toward access. This is part of what I call “favor access,” that acts as if respecting disabled needs is a huge favor, an act of charity instead of an act of solidarity, understanding that the discrimination we face is interwoven. As Leah Lakshmi Piepzna-Samarsinha has argued in conversation with Stacey Milbern, access isn’t enough: access is only the first step, and disabled people “are more than our access needs” (Milbern, qtd in Piepzna-Samarasinha 129.) Disability literacy means questioning why you had access and someone else didn’t in the first place; it means questioning the structures that frequently cast disabled people as an afterthought.
Those structures are ingrained deep and push us out of community. Writing about how social structures and government policies routinely failed people during the ongoing COVID19 pandemic, disabled activist Alice Wong writes, “I want to believe that the future is not just mine but ours. When one of us falls through the cracks, we all suffer and lose something” (270). Wong describes the collective brilliance of disabled people and especially disabled queer people and disabled people of color, who have devised their own ways to survive, their own networks, their own cultures and communities. Disability literacy isn’t just about access—it’s about understanding the creative, ingenious literacies disabled people have developed to survive in systems that at best fail to support us and at worst are actively causing us harm. Disability literacy recognizes entire systems of knowledge disabled people have developed to navigate an ableist world and create community.
Importantly, I ask you to engage in this work ethically. Don’t rip off disabled people’s work or movements or turn them into a more convenient-for-your-agenda, palatable, milquetoast version that suits nondisabled people’s needs. I see this happen again and again (and think a lot about how I can continue to learn from these frameworks and write alongside them without stealing from or not crediting their work), especially by academics or heavily-resourced organizations who, because they are doing disabled people some form of “favor access,” then feel entitled to use whatever resources created by disabled people—and especially multiply marginalized people—without crediting their work. Or groups ask disabled people for their intellectual, organizing, and access labor without being willing to compensate or otherwise recognize that labor. Or disabled folks are asked to neatly package our traumas for public consumption to further their organization’s mission, all while watering down the work of disabled organizers and activists. Disability literacy means not just understanding what disabled people are saying and organizing for, but understanding the nuances and contexts of why and how we say these things.
I don’t know, kind reader, where you are at in your disability literacy journey—I’m still growing myself—but below I offer some resources that mean a lot to me.
Resources
Disability Visibility Project, created by Alice Wong, which includes podcasts, essays, and other resources.
Disability Visibility: First-Person Stories from the Twenty-First Century, edited by Alice Wong. Vintage Books, 2020.
Hubrig, Ada, and Ruth Osorio (Editors). “Symposium: Enacting a Culture of Access in Our Conference Spaces.” College Composition and Communication, vol. 72, no. 1, 2020, pp. 87-117.
Hubrig, Ada. “’Liberation Happens When We All Get Free’ -or- Disability Justice Academia Isn’t.” Spark: A 4C4Equality Journal, vol. 4, 2022.
Kafai, Shayda. Crip Kinship: The Disability Justice & Art Activism of Sins Invalid. Arsenal Pulp P, 2021.
Osorio, Ruth. “How to Be an Access Advocate.” Composing Access, May 2017,https://u.osu.edu/composingaccess/during-the-presentation/. Accessed 8 Dec 2022.
Piepzna-Samarasinha, Leah Lakshmi. Care Work: Dreaming Disability Justice. Arsenal Pulp P, 2018.
—. The Future is Disabled: Prophecies, Love Notes, and Mourning Songs. Arsenal Pulp P, 2022.
Schalk, Sami. Black Disability Politics. Duke UP, 2022.
Sins Invalid. Skin, Tooth, and Bone: The Basis of Movement Is Our People. Sins Invalid, 2016.
—. “10 Principles of Disability Justice.” Sinsinvalid.org, 2014. Accessed Feb 22, 2023.
—. “We Believe in Solidarity.” Sinsinvalid.org, 2014. Accessed Feb 22, 2023.
Wong, Alice. Year of the Tiger: An Activist’s Life. Vintage Books, 2022.