Episode 22: Episode 21: Disability, Activism, and Qualitative Research

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In this podcast, Emily Nusbaum interviews Alice Wong, disability rights activist and founder of the Disability Visibility project. Their conversation Alice describes the relationship of research to her activism, her experience in the academy, and key questions that scholars should consider when embarking on research with marginalized communities. Below is a transcript of this talk.
Alice 0:25
All right,
Emily 0:27
my name is Emily Nussbaum, and I'm here with Alice Wong talking with her this evening for the Qualitative Research SIG of AERA. And I am super thrilled to be interviewing Alice for this episode. Alice is the director of the Disability Visibility Project, a thought leader known everywhere in Disability Justice and access issues and author of the recently published acclaimed book Disability Visibility. So Alice, thank you so much for talking with me.
Alice 1:11
Thank you for having me, Emily. You know, I also want to say that we have been friends for a long time, and I just don't want it to be a conversation with you.
Emily 1:24
Yeah, me too. So, since this is for a group focused on qualitative inquiry, I reached out to you thinking about your work through various forms of social media and the Disability Visibility Project and ways that the qualitative research community can start to think more expansively about what counts as qualitative research, and that kind of thing. But I think if I'm correct, and clarify, of course, that you began a more academic career in sociology. So I wondered if you could just give us kind of that background of how you started thinking about research and what that background was, and then we can talk more about the shift you made to the super important and impactful work that you're doing now? Well,
Alice 2:31
Just a long story short...I really...my initial career goals, my vision was to be an academia, I love to Sociology, every semester, I stroke fast, and, you know, I feel like sociology gave me the lens to really see the world and analyze the world. Especially, you know, toward the event of disability, you know, beyond, you know, to create a better model. So, you know, I went to undergrad I majored in sociology, you know, I keep in touch with a bunch of professors. It is a sociology department at Indiana University, in Indianapolis. I can't remember who it was who gave me my first experience as you know a research assistant at, you know, to tell you the truth, I am so grateful for their support and their belief or in me to be their student really activated it, you know, I saw a lot of gaps in the literature. You know, just gaps in research, just, you know, where are the disabled people? You know, there's you know,
Emily 4:10
like, in terms of only talks about talk about gaps and disabled people in terms of voice and in terms of like representation outside kind of more deficit based perspectives. Yeah.
Alice 4:28
Health care very simple. You know, there's a lot of work guys out there equalities it's so such a structure of medicine but you know, also maybe I've been thinking about like, well what about you know, disability and there's a, you know a lot of work on devious and stigma, you know, Eving Goffman, it was it was earlist people. Goffman and Foucault as well, just really If you think about what are the disabled perspectives, disable scholarship, advance these kinds of ideas, extend these ideas. It wasn't until, you know, that's really where I started studying about disability studies, work of Erving K. Yes, his work. People of the UK, so despite all of her
Emily 5:37
social model,
Alice 5:41
those were trying to like, wow, like, there are these, you know, there are people doing this work. And, you know, I thought this to be my contribution, I think, to a person particular, that's really was kind of a model of what I wanted to do. To date, Barbara Waxman.
Emily 6:04
Yeah, I just need to share if you can share a little bit about who she is, I only just learned about her and her work recently, in the last few months, helping a longtime activist sort of organize some of their materials for an archive for the San Francisco Public Library. And Amazing, amazing. So do you want to just mentioned who Barbara Waxman is?
Alice 6:33
Yeah. So Barbara Fay Waxman is a disabled woman, she was both a scholar and an activist. She is no longer with us, you know, rest in power Barbara, and, you know, she was one of these. So, like, unapologetic badass disabled women just totally grounded in the love of her body, the love of her sexuality. She did a lot of work on reproductive sexual health, of disabled women. And that was traditionally one of the areas that I really wanted to focus on. You know, as I did, various, undergrad, you know, just searching, you know, just so, lucky for a bit of people that are out there, that I could kind of connect with or at least identify with. though, you know, I think Barbara was one of those people. And, you know, she had a really long career of being both a scholar and an activist. And she both. She did. She did both. they were hand in hand.
Emily 8:06
Yeah, I'm interested in that. And I want to get back to, to more of your work or how you're thinking about it, but this nexus of being a scholar and an activist, and what more traditional kind of thinkers or people who are in more traditional academic spaces, what we what we could take away from that, or what any of those people could take away from that. Because I think that, that that Nexus is very, very important when we think about advancing that critical games of qualitative research.
Alice 8:41
Yeah, I would say that, you know, people like Barbara [inaudible] and Paul or his story here. Also they are really both activist, that says a lot about the academy and, you know, marginalized people who are entering the academy they can't separate the lived experiences from the way they teach from the way they relate to students, faculty, staff, I think, you know, what academia does, it sectors normative perspectives, normative body-minds. clearly, you know, white perspective white norms. And you know, this is this place is a lot of pressure to force people to like, separate parts of themselves. It does not encourage people to be who they are or every state that they are. If you think about the way scholars of color are really just not welcome, you know, somebody marginalized students at university scholars enter academic spaces, but they often don't at that staying. this says a lot about structural racism, ableism, and classism, that is pretty much permiated. Yeah. So you know, I think sometimes people ask when I became an activist, you know it is a very simplistic answer, but, you know, being disabled in a in a non-disabled world did not give you a choice. This is not a privilege. [inaudible] You know a lot of what I admired in both Paul and Barbara is that they used their positions, they used their research, they used all of their expertise and skills to serve us as the disability community. I mean, it shouldn't be a radical notion. But I think it still is. Because it goes against every sort of conventional wisdom about getting tenure or being professional. and this is wha I did. So there's different motives. Oh, why they are stroller? Did I beat myself? You know, initially, I wanted to contribute to the field I, you know, thought my perspective my I would like to be somebody that does research as a disabled person, with disabled people versus about or at disabled people.
Yeah. Thanks. And I want to just just pause for one second and reinforce that to people that are listening like that, that kind of distinction is really the crux of, say, the academic field of disability studies. And then also the way community scholars are working around and within in disability, right, which is research isn't about or on, or to fix or anything like that for abled people, right. But it's about centering disabled people and non normative body minds and thinking of disabled people as research partners, as well, in the process, so come kind of turning Inside Out of the framework.
Yes. I did. Also, I want to share that, you know, lived experience in addition to other skills, they are not mutually exclusive. The big idea misconception or binary that's I want to smash. Because I think people presume that I just have to have the research skills that's it and a theory and all that stuff. And disabled people are the ones who are the ideas or the ones to give feedback versus active partners in the development of theory.
Emily 14:33
That's super powerful Alice
Alice 14:35
It should be obvious, but it's not. You know, there's still a lot of power dynamics. You know, disabled people are treated in a very tokenistic, exploitative and extractive ways,
Emily 15:03
And especially when we think of multiple marginalized disabled people. Absolutely. So
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Emily 16:15
So I'm curious, because I think this is this notion. I mean, I wrote it down. And I'll just say it again, that is so powerful, this notion of lived experience versus academic skills are not mutually exclusive. Right? And it's like this question of who? Who gets to make knowledge, right? Like, it's a question of epistemology, really, and who, who gets to, to create knowledge. And so it makes me think about why I wanted to reach out to you to do this interview, thinking about your work in the public domain, right. And that you have a very strong social media presence, of course, and can speak about different different, like on Twitter with crypto vote, but also thinking about the Disability Visibility Project. And the way you're kind of work in those areas can help academics. You know, people who are, are in the, in, you know, academic spaces, really think more expansively about this idea of knowledge production. So do you mind sharing with us a little bit about the Disability Visibility Project, sort of how it emerged, what it is? And we can go from there?
Alice 17:47
Yeah, sure. Before I get to that response, I want to also say, you know, think who gets to ask and form research questions is really central in terms of just really everything. Not just for creating knowledge.But who gets to ask the question, because even
Emily 18:21
a step before that, right.
Unknown Speaker 18:22
I think that asking the question is really about identifying that something is a phenomenon? I feel like, you know, what people did before in all disciplines that academia is more people with, you know, a variety of perspectives, but also located different places, different different contexts. You know we don't ever use the term research questions. Disabled people ask a lot of amazing questions all the time. But this is actually such a rich, you know, rich kind of intellectual work. But the think is that it doesn't take place within certain structures, so it's not recognized as intellectual work. So, you know, we need to also kind of unpack all of that stuff about, you know, really research. Yeah, asking question to produce in new knowledge, because, again, it's often Those who do have the means of production are the ones driving the qeustions. You know should it really be in the hand of those who are the focus of inquiry.
Emily 20:16
I know, like I asked a previous question, I brought this up, but this thing even brings up this notion of like, I mean, I think a lot about this and some of the partnerships I have with community scholars about like, what do we then do with like, those questions and what comes out of them? Right, and how do we not use it? How do we use it for the purposes of the individuals that have framed the questions? Right, versus the purposes that people in the academy often use use them for? That?
Alice 21:02
All of these kind of feelings and thoughts about who has control, you know creative control, just the ability to essentialize and articulate ideas, you know, that doesn't take place in a vacuum. These things happen, you know, in collaboration with others, did offer, you know, building on, you know, past work or past ideas. I think that leaves a lot of people out. Right now, I'm kind of not limiting myself to do stuff inside or outside the academy. I feel like I can be wherever I want to be, you know. I might just like have a day pass. [inaudible] that's fine by me. Because, you know, I like to kind of, kind of get by. You know, [inaudible] at a bit of [inaudible] but also, they will be engaged, to be what's really exciting that I don't think of these days as separate. I believe that disabled people belong everywhere.
Emily 22:48
Alice 22:49
And you know while I have clearly, just to be honest, I do think that I have been driven out of academia. For a lot of reasons, But I don't regret it. You know, I just I think it was probably the smartest decision I ever made. To be honest.
Emily 23:26
Can I offer before you start, like, I want to say that this project and thinking about this project as research, is, to me so transformative and powerful. And when we think about wanting to win, we're a part of an upcoming book project that I have with another colleague and our purposes in this edited volume to I think we called it quote, radical possibilities, maybe I can't quite remember but thinking about how something like the Disability Visibility Project can allow us to think so much more expansively. Right about this question of what counts, right. So I just wanted to give that intro of why of the super important connection, I think, between the DVP and qualitative research and the qualitative research community.
Alice 24:32
I did yeah, we could use the terms content, media, culture and research of us interchangeably. whatever you want to call it. It's, it's useful. it's valid its a certificate. So the reason why I started it was out of my own frustration at the history about disabled people by disabled people. Yeah, I started in 2014. it was stories by disabled people here at artist history, nonprofit or storyboard, it leads up to the 25th anniversary. Yeah, what is it? 2015. I did that as a way to generate and document our stories, not to kind of wait around for historians. You know, I feel like that today was one of the most exciting days. Yeah. Because people say like, your story matters. You don't have to be an icon. You don't have to be a leader or famous. You know, your story is part of this growing collective of like, what is the disability experience like in the 21st century? Why can't we participate in the creation and documentation of our history? And the fact that story core has a relationship with our library of congress, that allows participants to have their story archived there. You know, this isn't just for academics for historians. It's for the public. And that's, that feels powerful. Yeah, feels really good. It feels like a something that we're putting out to the world that is for the future. Yeah. Which is precisely I think, so much of the intention of research. That's, it leads to
Emily 27:34
Alice 27:37
Yeah, so I think that's where the idea started and You know, I'm just one person. So, you know, I just, I didn't know, like, I really didn't know,
Emily 27:53
your impact is so huge, you know, that. I hope you know, that.
Alice 27:57
You know, I guess but, to be honest, I just used the tools that I had in front of me, which is a website, which was social media advantage, you know these are the things I had available to me. You know, this snowballed. I thought it would just be to the detriment of what you're doing. And I think it's part of your interest to interview hundreds that's you know, people don't want always to tell their story.
Emily 28:49
You don't need a history to create a history and knowledge base that has not existed before.
Alice 28:56
Yeah. You know, clearly I didn't want to give of myself to only histories which could be you know, form a lot of perspectives and oddest form just a ball too. You know, people who are deaf and hard of hearing so, you know, I branched out and started publishing just essays about website. I started a podcast in 2017 which is really amazing because here I am talking to you in December 2020. I just published my 92nd episode.
Emily 29:44
Oh my gosh.
Alice 29:47
That's wild to me. Yeah. It's been a real adventure and a real labor of love to be able to jump around, try different methods, use different formats, for community to be involved in multiple ways. And I think thats for researchers and academics to have so much work. You're a qualitative researcher and you just do a page or a study or projects. There's so many jumps in your work. It really needs to reach people. You know, I would hope that academics think beyond their journal articles beyond their presentations you know, just like, you know these days our jobs are not rewarded in the system and that was a part of the problem. No incentive to create.
Emily 31:38
like you're talking about like that sort of embedded forms of like, ableism, and racism and classism that exists within the Academy, and what, you know, traditional researchers are expected to produce.
Alice 31:51
Yeah, I don't get the kind of pressures that people are under, especially here or junior faculty, or, you know, adjunct or graduate students, you know, because you do have to perform at, perform up to a certain point, right, this is the reality that I experienced as well.
Emily 32:23
Ready to reality? And most places still?
Alice 32:27
Yeah, and I think anybody who claims that otherwise is not really being honest. You know, to be real. Yeah, yeah, I think, you know, this is a real reflection point where, you know, for political and cultural climate, where people and institutions are being held accountable. Yeah. This is your time, if not now. to really think about what are your intensions? How do you practice your values? Yeah. Not just in your work life. But in your everyday life. Sure. You say, oh, you're an ally, or that you're in solidarity with others? Where does that show up? Like, what are the ways that you're actually doing this. And I think that You know in one of the ways. You know I could never to be more charitable. you know, yeah, put your work out there. And to really receive the critique, to receive, you know, real questions, by the people that are the most impacted. You know I think not receive that in a defensive way.
Emily 34:22
And going beyond like, you know, in in a qualitative research class, or in most textbooks, there's something called a member check where you run your analysis by the people that participated. But I think what you're talking about speaks so much more deeply about the relational ways that researchers and participants are co researchers are engaging and allowing those who have more privilege and power to be asked really difficult questions. Yeah, thinking far beyond what gets talked about, I think in the typical typical qualitative research course or text?
Alice 35:04
It's not a checklist. It would be more thoughtful, yeah, more intentional, Also just as scholars like, was your own with this is or areas that you're just thoughts as well first there I think, You know, there's also this very weird you know, job expectation of researchers and like, you know scholars often you don't know at all and i don't i think the offer is a art fair of expectation and I think you'd use a walkway when I see scholars who are just really open it just say what they know and what they don't know Yeah. Like with that frustration research make great art never ever neutral. if we can we can all start from that place. Yeah. I feel like that's where you really start out it really effective relationships with people from the outside. Yeah. Oh, sorry. Do you know there's all those times visible labor thats never going to be compensated. Yes by the academy and I think one other activity that's really undervalued is relationship building.
Emily 37:13
Absolutely, absolutely.
Alice 37:15
And I feel like that. For those of you, you know, this is it doesn't happen overnight. Today you have a study, you're gonna be you're getting IRB approval right now. You're like, Oh, shit, like, I better, you know, do outreach. You can't rush this stuff. And people will sit here doing this with the right intention. You have to lay the groundwork. You have to be of service to others. Yeah. And be really transparent. To be able to build relationships with people, whether they're going to be participants in your study, or as you know, true creators. Absolutely. There's just a lot of kind of foundational work that requires a lot of your own labor. But I will say that this is something that is absolutely valuable. It is really it rich. It is.
Emily 38:50
I mean, it's essentially
about the kind of
the kind of research that you're that you're promoting.
Alice 38:58
Yeah. They deserve you as well. Get along. Nice to serve everyone. That's, you know, that's just their place. Yeah.
Emily 39:15
Oh, gosh, Alice, thank you so much for sharing. I feel like if I didn't, if I didn't try to wrap this up, I could stay on here with you chatting about different things for a really long time. But I want to I want to be respectful of your time and I know that everyone who's listening is so appreciative to hearing your perspective. So thank you so much for sharing your work and your thinking and your your prompts for sort of the academic community of qualitative researchers is super important.
Alice 39:59
Also, before we end, I have some more questions. So this is from a book chapter for a book that you are [inauditble], I'm going to, people might not ever read this or come across this book chapter that I wrote for Emily and Dr. Lester. So here are just some of my thoughts and questions for qualitative researchers. Number 1, how are you uplifting to amplify the scholarship of people outside of the academy? Second, are you speaking in your classes and in panels that you're presenting and coauthoring in ways that emphasize your research partners? Here is another questions, how many non-academic scholars do you cite in your work and if it is not many, why is that?
Oh gosh, that is so important. Huge questions.
And two more questions. If you are conducting research about a marginalized community, how will you solicit feedback and critique from people with that experience? And a final question, which I think is probably, the thornest question, and could actually be an entire separate podcast episode, before starting did you research about a marginalized community ask yourself if you are the best person to do this? And whether it is appropriate to defer to other scholars who have been doing the work?
That is a good one.
And Hopefully that leaves our listeners with some food for thought.
Thank you so much Alice Wong.

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