The following are some excerpts from an interview conducted by Alice Wong, Project Coordinator of the DVP, with Mia Mingus on August 23, 2014 at StoryCorps San Francisco.
This is the second of three blog posts featuring Mia and Alice’s interview.
On being visible and the expectations and obligations of advocacy
Alice: Talking about disability was very narrow in terms of what’s allowed. So that to me is like what’s really suffocating. People with disabilities who really want to extend the conversation. So it is infuriating and I think you and I both. Commonly we are ask again, and again to share our knowledge all the time to various groups like, “Oh we never knew this and we really would value your input and sometimes some of that is just expected free labor.
Mia: I mean I, I think it’s really complicated. So in my mind there are parts of it that are like free labor and I get exhausted. And at the same time I also think that like, I also feel really clear that like, this is my commitment at least, and so, I, and I get to have a choice in that, like, I choose to do that, but I also feel like, at least for me, like in this historical moment, I feel like we’re still, when we look back at this historical moment, we will see that we are still such a hairline from disabled people only, never being in the public sphere, right, only being institutionalized, only being kind of like kept in the back rooms of our houses or what have you. Or sometimes literally chained to the beds, in our houses, like, or being forcibly institutionalized in group homes, forcibly incarcerated in prisons, what have you. Like, I, I also feel like we’re at this particular moment in time where those of us who are here. I think in a lot of ways are obligated to do that work. Now obviously there are days where I’m exhausted and I’m like, I’m not. No, like I’m not gonna educate any body else for free and I feel like I’ve… gotten to at least where I am able to get paid for a lot of that education work. And it’s like, a delicate balance because you know? I think about the people that came before me.
Mia: I think one of the core pieces of my work around disability justice and like all disability justice work is interdependency in this kind of like rebuilding and reframing of what a liberatory way of understanding interdependency is. And I, I see that in everything and so I think part of that interdependency is I am both obliged and choose to show up for my, my folks and myself…I think there’s a way of understanding, like, a liberatory side of obligation that is not about, just kind of, like, reluctancy or, like, being resentful, but that is actually about like I, this is my duty and I, and I choose it willingly and I choose obligation
On aging and disability
Alice: I’d like to talk a little bit about the elder in you because I think, and aging, because I think you and I talked about this earlier and I think it’s definitely a part of the experience of disability. You and I are in, pretty young, I mean, by most standards and, 40 and 33, and yet I think because with our bodies and our disability, I think we are pretty amazing survivors… I feel 75, you know, just the energy, the wear and tear, and I think also just the, psychic or, you know, psychological, the micro aggressions, that really can erode, sometimes, a person’s feeling of self, and. A person is a person not, it really ages you, and I’d like to talk to you about what you think about, in terms of aging, and the process, and kind of your body changing over time…. we both know so many amazing people with disabilities, and yet they often die way too early. And part of why I’m doing this project is that when we really need to capture as many people’s stories. I really do feel like we’re like an endangered species sometimes.
You know, it’s like we’re really precious, our DNA and our contribution to the gene pool society is really unique, and we are dying out often. And I think dying out for a lot of reasons, you know a lot of societal reasons. We’re not getting enough supports, poverty, you know, oppression and our own bodies wearing out. So, tell me a little bit about your thoughts about changes in your body and how you feel on the inside, the elder in you.
Mia: I mean I do, we talk about this all the, we talk about this all the time that, that it, it’s like disability ages you faster. And, and you have to think about things differently than you know, like we might be young in like. Kind of traditional, ablest, able-bodied, supremacist understanding of age but in terms of disability were actually, [LAUGH]
Alice: We’re pretty old!
Mia: We’re pretty old. Like, I mean, I er, you know, I feel like my body, you know, the chronic pain is definitely getting more and more intense with every year… You know, and sometimes I don’t even know how to measure that any more. My baseline of, like, what regular, my ground level kind of zero, you know, of pain is just.
Alice: Sometimes it happens so gradually that it’s really hard to have a baseline.
Mia: It is and, and you have to, you have to try prepare for the gradual. Like, and you don’t know when it’s gonna happen. You know like, I. I feel like for me you know, I can read all the stuff about post polio that I want to but it doesn’t who knows how it’s gonna happen in my own body and what, when it’s gonna decide to come and be more intense or you know, what, what ever that process is gonna look like and yeah and I, I definitely feel a difference. A huge difference from even just, like, five years ago of, like, things that my body used to be able to do and things it can do now. And, you know, a part of that is also, like, I was, I had so much internalized ableism growing up that I think that I definitely pushed myself way too far. I was not even cognizant of things that I, that I shouldn’t have done, right? And things that I could have been doing to make myself more. Sus, sustainable but because I was living in this kind of able, in, living in this ableist world, but this like ableist understanding of my disabled body and because I didn’t have any type of like, disability framework to understand.
On work and retirement
Mia: You know, I’m thinking about retirement, or not even retirement, but like, what gets coded as retirement. Like, like, I’m thinking about, A K A, when I’m not able to work anymore… when my body is not able to work anymore.
Mia: And what I’m gonna have to do, and think about when that happens. Whereas, I feel like the woman of color trope, is like, you just work and work and work and work, and you know, like, that’s part of like, such a huge part of our identity I think as women of color. So what does it mean then to be a disabled woman of color and to really be like, putting forth questions around work? And what does work mean? What does it mean to be a woman of color who can’t work? Or who is not able to work as much, right? And like, in some ways I feel like it’s totally oppression that like makes us work harder and makes us look forced to carry the brunt of a lot of. Women’s work as just well as work in general, as women of color but then at the same time it’s also like we have this like attachment to that too that we do to ourselves and each other and its a catch 22 often times so. I think about that a lot. Around like, yeah, disability and aging.
Alice: Yeah and I think sometimes for me there’s this huge pressure to fit in, to do well and you know? Fit in within this ableist framework. And like you said, you have friends you know, mostly non-disabled. You know, it’s really I think, sometimes that learning experience coincided with growing up. I was pushing myself so hard and by my mid-twenties, and it was really until then, when I hit a wall, that I realized, oh my gosh, I need to make changes in my life, for myself.
And that I shouldn’t have to worry about the consequences of those changes.
Mia: Yeah, well and I also think just adding on to what you’re saying before that like, you know, I talk about this all the time but like the allure of ableism and the kind of like sexiness of ableism is so intense, you know, like that, that. I feel like it’s just, you, I push myself past it because it was also what I was told I was supposed to desire. Like, I was supposed to want to …work until I collapse. And it was like, Look how hard I’m working. I’m not only only a good capitalist in terms of working, but also so ableist. Look how able-bodied I can be. I’m about to push myself until I die. Go the next day for another 24 hour day or what have you. Like, like the allure is so intense, and not that’s, I like I often think about this. Like how, like what you said in the beginning, like how ableism is so a part of everything with you and so it’s entrenched in like our world that we don’t even see it you know?
Mia Mingus is a writer, community educator and organizer working for disability justice and transformative justice responses to child sexual abuse. She identifies as a queer physically disabled Korean woman transracial and transnational adoptee, born in Korea, raised in the Caribbean, nurtured in the U.S. South, and now living on the west coast. She works for community, interdependency and home for all of us, not just some of us, and longs for a world where disabled children can live free of violence, with dignity and love. As her work for liberation evolves and deepens, her roots remain firmly planted in ending sexual violence.
Mia is a core-member of the Bay Area Transformative Justice Collective (BATJC), a local collective working to build and support transformative justice responses to child sexual abuse that do not rely on the state (i.e. police, prisons, the criminal legal system). She believes in prison abolition and urges all activists to critically and creatively think beyond the non-profit industrial complex. Her work on disability justice has been cited and used in numerous texts and events around the world.
Mia was recognized by the White House as a Champion of Change, an honor bestowed on Americans doing exemplary things to uplift their communities. Along with 14 other women, Mia was recognized as an Asian and Pacific Islander women’s Champion of Change in observance of Asian and Pacific Islander Heritage Month. Mia was a 2005 New Voices Fellow, was named one of the Advocate’s 40 Under 40 in 2010, one of the 30 Most Influential Asian Americans Under 30 in 2009 by Angry Asian Man, one of Campus Pride’s Top 25 LGBT Favorite speakers for their 2009, 2010 and 2011 HOT LISTs, and was listed in Go Magazine’s 2013 100 Women We Love. Mia was honored with the 2008 Creating Change Award (below) by the National Gay and Lesbian Task Force and a community activist award for her “dedication and steadfast activism” in 2007 by ZAMI in Atlanta, GA.
Alice Wong, is a Staff Research Associate, Department of Social and Behavioral Sciences, UCSF. Alice works on various research projects for the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability and Rehabilitation Research and the Administration for Community Living. She is an author of online curricula for home care providers and caregivers for Elsevier’s College of Personal Assistance and Caregiving. Currently, she is the Project Coordinator for the Disability Visibility Project: A Community Partnership with StoryCorps and an advisory board member of APIDC, Asians and Pacific Islanders with Disabilities of California. Alice is also a Presidential appointee to the National Council on Disability, an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policy.