The context that we bring to books is just as important as what is written on the page. I am a disabled queer Asian American woman born just a smidge before the passage of the 1990 Americans with Disabilities Act (ADA), or more commonly in the disabled community, I am a member of “the ADA generation.” I disclose this because the experiences and historical knowledge that I held while reading Resistance and Hope: Essays by Disabled People edited by Alice Wong, founder and director of the Disability Visibility Project, meant that each of the 16 essays spoke more truly and directly to me than most disability nonfiction.
Typically, the disability history I come across mentions the 504 sit-ins, the Colorado Gang of 19, the Capitol Crawl, and of course the signatures on the ADA that demanded “the shameful wall of exclusion come tumbling down.” The splashier landmark wins and the socially acceptable activists always get recognized, but my organizing work focuses on the moments between the wins and amplifies those marginalized communities that have enabled civil rights victories.
These compassionate essays can guide the next stage of resistance—no matter who is in office or what party controls Congress. I spoke with Mari Kurisato, author of “They Had Names”; Naomi Ortiz, author of “Self-Care When Things Shatter”; and Victoria Rodríguez-Roldán, author of “Who Gets to be the Activist?” about their work.
What was the writing of your essays like for you?
Mari Kurisato: The process was basically embracing terror. Panic at accepting the project, abject fear at being asked to do it with imposter syndrome kicking me hard, and then using my deep well of rage to push through it and discuss what I needed to say—being Indigenous and disabled is a double whammy.
Naomi Ortiz: The essence of writing for me is the practice of embodying resistance and hope. I’m often trying to write about things that, in a lot of ways, I’d be happy to avoid thinking deeply about. Confronting the resistance in my writing is often about feeling uncomfortable, pondering questions that I don’t have answers to, asking the universe for help, and sinking deeper into my discomfort and unknowing, all while trying to listen for what bubbles up.
Victoria Rodríguez-Roldán: Writing [my essay] was, to an extent, a process of calculation—of how much should one disclose without losing relationships and connections. I chose to relay the experience without [naming anyone] precisely because of that.
Disabled people of color are often expected to share and disclose information about our bodies, particularly when civil rights and lives are at risk. Each of you did this in your essays. How did you navigate that expectation?
MK: Documenting my body was both clinical and shameful. Clinical because it’s oft-covered ground and shameful because this is the first time I’ve done it in this fashion, which unlike tweets, is not something I can delete. I don’t navigate that line particularly adroitly, partly because the line keeps shifting and partly because keeping up is so exhausting. I think resisting is born from hope, and hope is created by acknowledging who we are, what we need, and what we want.
NO: I always feel a little bit uncomfortable [when I share] how I navigate discomfort in my body. I think there’s a difference, though, between being in a position to share those things because I’m reaching toward those same spots of vulnerability and tenderness in others, versus trying to “help someone understand” the way my body works. At this point in my life, I’m very particular and conservative with sharing information about how my body functions to help somebody understand difference. I’ve come to believe difference should be an expectation that everyone has when interacting with other people.
VRR: Most non-marginalized people get to simply say, “That was screwed up,” but we are often forced to grow thick skin, live through it every day, and put up [a] smile when horrible oppression happens. I do policy lobbying for a living—diplomacy is a skill I have to engage in. But we should not use this to mistreat the people who do not have that diplomacy. That experience also speaks to a bigger point [about] what society demands of us to be included. It demands assimilation from the disabled by wanting us to play respectability politics.
What makes practicing resistance challenging?
MK: Being disabled is marginalizing enough. Being Indigenous forces me to experience ableism through a colonial lens. Life is getting harder, and decolonizing in a world where I need access to colonial meds makes it extremely difficult. More challenging is maintaining my health, maintaining course as the disabilities tangle with the diseases and get harder to treat. Less challenging is knowing I’m not going it alone.
NO: Resistance encompasses self-care. However, people can make fun of self-care practices or present it as a “cop out,” define self-care as pulling away from responsibility, or as another way for us to be self-involved and selfish. They don’t see it as a counterbalance to what it takes for many of us to survive. When I was writing [my book] Sustaining Spirit: Self-Care for Social Justice and searching for a definition of self-care, most of what I found detailed self-care as supporting health or pampering. This definition seemed so lacking to me, especially for communities of color, disabled folks, queer folks, Indigenous communities, and so many others who are taught that our cultural truths and ways of knowing cause societal disharmony.
VRR: The stereotypical image of the disabled is the otherwise photogenic and attractive white person in a wheelchair with the occasional gay man [on] the list. We often see this justified in a results-oriented approach—this is what gets us the votes in Congress, or what gets [us] admitted into the offices [where] we have to advocate, and thus gets results for everyone. But it doesn’t; it leaves people unadvocated for. [That’s] why I often ask: Who isn’t in this room today?
What would need to change in our society for our resistance and hope to be sustainable?
MK: The whole system needs to be nonviolently, but completely, replaced. Humanity [should] not [be] seen as a unit of production that has a set value, but as some of the rarest beings in the universe. All of us need to be protected, cared for, and given the tools to protect each other.
NO: [We need to foster] conversations [about] engaging with our vulnerability. This is no easy task, especially with the levels of trauma that so many folks carry. Folks truly [need to] be able to develop relationships [that can help us] understand resistance in different ways [and] nourish our capacity for hope.
VRR: I think we need to change how activism works. Unfortunately, the mainstream disability movement often falls prey [to] respectability [politics]. There’s a lot of racism [and] exclusion within the advocacy world.
How do we know when our methods are effective? What does that look like?
MK: If they are effective, the result is easy to feel. I feel energized, powered up, and ready to “keep going” even when there are trolls and ableist eugenicists in my Twitter timeline. Drop the profit model. Choose the people model, and put disabled people’s needs at the top of that.
VRR: One of the crucial questions before any moment of resistance is “what result do we want to achieve?” However, one thing we shouldn’t do is begrudge the tactics of others, or for that matter, the anger of others.
NO: Resistance and hope is about holding the capacity for tension in my body. I know resistance and hope are working when I’m grounded in the knowing that we are all in this together, whether we recognize it or not. When I’m in touch with the rhythm of resistance and hope, I am in touch with my humanity. I know my practices are working when I am turning toward this tension instead of away from it.
This interview has been edited and condensed for clarity
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