Black feminist disability activism
Trudy, Gradient Lair: http://www.thetrudz.com/blog/
#DisabilityTooWhite - Vilissa Thompson
#DisabledAndCute - Keah Brown
#Misogynoir - Moya Bailey and Trudy
#SolidarityIsForWhiteWomen - Mikki Kendall
Moya Bailey and Izetta Autumn Mobley, "Work in the Intersections: A Black Disability Framework," Gender & Society 2018, open access link: https://www.moyabailey.com/2018/10/16/work-in-the-intersections-a-black-feminist-disability-framework/
Moya Bailey, "Race and Disability in the Academy," The Sociological Review, 2017, https://www.thesociologicalreview.com/blog/race-and-disability-in-the-academy.html
SUSU (Black feminist giving circle): http://www.blackfeministfuture.org/susu/
Wakelet of #DisabilityTooWhite: https://wakelet.com/wake/2b4b1510-c26c-4b87-89cb-1ed1be6150c5
Black Disabled Woman Syllabus: http://rampyourvoice.com/2016/05/05/black-disabled-woman-syllabus-compilation/
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In this episode, I speak with black feminist disability activists and scholars Dr. Moya Bailey and Vilissa Thompson, LMSW. Moya is an assistant professor at Northeastern University and really a leader in the fields of black women's health politics and the digital humanities. We went to graduate school at Emory University together and it is really such a joy and an honor to get to talk to her for the podcast. Vilissa is a disability activist and licensed social worker who created the #DisabilityTooWhite hashtag and also is the director of Ramp Your Voice, a disability advocacy consultancy. I've been following Vilissa's voice for awhile and I'm just so humbled to be able to talk to her and learn from her leadership.
We discuss "hashtag activism" as part of a constellation of strategies used by black women, particularly black disabled women, to resist ableism and what Bailey has termed "misogynoir." Our conversation takes us from hashtags to digital modes of social connection and community building to the politics of Blackness and disability in academia, and finally to the racialization of digital products themselves. We end by discussing what it would take to design a better world. Here's the interview.
Aimi: Welcome Moya and Vilissa. It's so wonderful to have you both on the podcast. And I'm excited to also be able to hear the two of you in conversation. I was thinking that it would be really amazing to have the two of you in conversation because you're both working on this concept of hashtag activism. And also really centering the experiences and knowledge of black women and black disabled women in particular.
Aimi: So Moya, you're writing a book about hashtag activism and Vilissa just wrote this great piece for an upcoming special issue of the Journal of Catalyst, which is going to be on Crip Technoscience in how disabled people are using technology for activism. So I just thought this would be a really great conversation for our audience to be able to learn about some of the ways that disability is intersecting with both these methods of activism, and in particular the activism of black disabled women.
Aimi: So, maybe to get us started, we could just talk about this question of what is hashtag activism? What are some of its defining characteristics? What are people doing with it?
Moya: I can start. This is Moya. And I think one of the things that I think about when I think of hashtag activism is people taking the means of social media into their own and taking it into their own way to create what it is that they want and need. One of the things that hashtags have been really instrumental in doing is giving people access to a conversation they wouldn't otherwise have. And hashtags were actually a technology that someone brought to Twitter from early list of conversations. So somebody who is familiar with that history decided, "Oh, maybe this is a good way to organize conversations that we have on Twitter."
Moya: And then we've seen it branch and grow into people using hashtags in really big ways. So just recently, to date our podcast a little bit, people have been tweeting about the Surviving R. Kelly series that's been on Lifetime. And so you can see the hashtags Surviving R. Kelly and also the hashtag MuteRKelly which references in organizing effort by black women to get radio stations to stop playing R. Kelly's music. And that action actually grew into a lot of different actions. And so both of those hashtags have been circulating pretty widely for the last couple of days while the series was shown. And I think that's a really good example of how black women in particular have been using hashtags to create change.
Moya: So one of the things that MuteRKelly has successfully done, was to get Tom Joyner who is a show, a radio producer and on air host for a very popular black early morning radio program to stop playing R. Kelly. And so that's one of the ways that people see hashtags being used as a form of activism, to actually get people to change their behavior and do something different.
Aimi: Vilissa, do you have any other thoughts about hashtag activism, kind of what it is, what it does, maybe in disability communities also?
Vilissa: I think that for me the disability community has been very purposeful. They use the hashtags to not only to gain attention to the issues that matters to us, but also connect with each other. There's a great hashtag called LupusChat that goes on Sundays where disable people talk about being dealing with chronic illness, dealing with lupus, dealing with all these things that matter to them with different themes each week that the chat is here. There's also SpoonieChat that black femmie has created where they talk about being spoonies, having chronic illness, what is that? I'm particularly drawing a new like for them.
Vilissa: I have my own hashtag DisabilityTooWhite, there'll be three this year that started a conversation about the erasure exclusion of disabled people of color within and outside the disability spaces. There's also the hashtag DisabledandCute which is coming up on two years next month that created by Keah Brown who is about empowerment when it comes to beauty. Disabled people finding themselves cute, finding themselves really in their own way, in a way that we don't really theme ourself because of the way that society does not view disable bodies as having beauty, as having desirability, attractability and so forth.
Vilissa: And the way that we have used hashtag, particularly as disabled black femmies and women, has been very powerful to start up conversations to really gain that community support and also have empowered ourselves individually. I know that with Keah's hashtag, that has been a very powerful tool for her to really feel a oneness with her black disabled body. And I think that's been, for me, a very powerful thing to see that hashtag be in existence and still be used today by people who take a cute picture of themselves and be like, "Oh yeah, having a good day today," despite maybe having a flare up or despite your body not really being the best but you still finding something good to say about yourself.
Vilissa: So I really feel that hashtags for our community is about connecting with each other, it's about empowering each other and about raising the awareness on the issues that are important individually as well as collectively.
Aimi: Yeah. I love that you're pointing out all these different uses for hashtags, bringing people together, providing opportunities for people to show themselves to the world and to connect to other people around that kind of display and affirmation. And it reminds of a couple pieces that Moya you have written about how black trans women use hashtags. I wonder if you have any thoughts about connections there?
Moya: Sure. Yeah. And I just want to echo what Vilissa is saying about how hashtags are a place for people to build community and that it's something that we really are fortunate to have in this moment, that people are able to get together in ways that they couldn't before. And so when we're thinking about black trans women and their ability to connect to one another, hashtags have been really important in helping people find community. And so one of those hashtags is hashtag GirlsLikeUs, which was created by Janet Mock.
Moya: And that hashtag has actually inspired and led to a lot of really good cultural media and it does similar work to the hashtags that Vilissa mentioned. So people are able to use that hashtag to post images of themselves just doing regular things and also it was an opportunity for different people to meet. I believe that the web series Her Story, which features Jen Richards and Angelica Ross, was created partially because those two met through using Janet Mock's hashtag. And they became roommates when they lived in the same city and then it inspired them to create the web series.
Moya: So I think that's one of the really beautiful and powerful things about the way people who are multiply marginalized are able to use hashtags to enable a kind of community that is very hard to do in just the world at large. You might be the only trans woman or disabled person near you but these hashtags can bring you together and the internet can bring you together in ways that you couldn't have been able to do just a few decades ago.
Aimi: Yeah. That's so interesting. It reminds me of a conversation I was having with Alice Wong who runs the Disability Visibility Project. There's also an episode with her about how Twitter makes it possible for people to engage in disability activism from their homes and their beds. And that that changes who we think of as a disability activist. And Vilissa, you wrote about this as well in your piece in Catalyst that there is something about being able to plug into a conversation via hashtags through the interface of a computer. That kind of takes away some of the spacial constraints that are on people, and may create other kinds of constraints because technology isn't always accessible. But it does seem like a really important way of addressing kind of how inaccessible protests can be and other things that we think of as kind of "normal activism" like being in the streets. But that's not available or even preferable or strategic for everyone.
Vilissa: Right. And I think that being online, it gives you the ability to do so many things. You can be on Twitter and tweet about the issues that you care about or you can start a vlog, start a blog. You can freelance and write, you can little videos here and there to talk about issues that matter to you. And I think that particularly technology and hashtag has opened the door wide open. And for me, being a disabled activist who I still feel like I'm still young in the game in a way, but just really getting us to see each other, particularly people of color, since disability history is very whitewashed.
Vilissa: And I feel that now disable people of color, especially cannot be ignored because we use these tools and we're making our particular stories heard. There's not just white, cis disabled men stories who are being heard more, it's all of us. And we all have the equal playing field. And I feel that technology allows that to really occur so that we are rewriting disability history so that it includes us. 'Cause I know that when I started Ramp Your Voice in 2013, many of us were just starting around that time and connecting with each other. So it's been very nice, six years later, to have this community, particularly a black disabled women and femmies in a space to where we're not just wanted to just kind of find each other, that we have a robust community now. And it's a great community. And represent many disabilities, many types of backgrounds.
Vilissa: And one of the things that I enjoy is meeting activists abroad on the diaspora, from Africa, from the Caribbean, from the UK, who are doing tremendous work in their respective homelands. And learning what they're doing and connecting with them. Because for a lot of those activists, they're the pioneers in their own spaces. So I think that these hashtags, technology especially, is allowing us to connect beyond our borders so that we can learn from each other, support each other. And for me, that's very important for the us of the diaspora to do that because we know of the struggles --and we who are marginalized--what it's like to be erased from your racial identity, to your disability identity, to your queer identity, to all of the identities that make who you are. And to be able to find people that can relate to that it's just so enriching and it gives you the ability to see that you're not alone. You do have that community that's within your immediate space but also outside of that.
Vilissa: So I think that for me just to see the color of disability advocacy be enriched and to see new generation, particularly millennials and Gen Xers really come together like that, is very important. And it does, like you were saying Aimi, it does erase those barriers to activism 'cause we do think of activism as people going out in the street. And that type of activism is important and it definitely has a place. But for disabled people, like for me, I wouldn't feel safe going out there because I have a certain disability where I could really get hurt if I was to go out on the street. But I could still have my voice heard by being on Twitter, by writing a blog, by writing an article. And that's just as important work for the movement as being out there in the street.
Vilissa: And I really think that, particularly with disability activism, we really see how much power that has with the fight for the ADA happen two years ago it was disabled activism, both putting their bodies on the line physically but also discussing their stories online about save Medicaid and having a preexisting condition. All those things matter during that time. And online activism works. So I really feel that as we shift our thinking about the power of activism and what it looks like, I think online activism has really made a movement and made a dent into what activism is. And that made a permanent stay in it.
Aimi: Yeah, that's wonderful. Something I was thinking about while you were speaking and also Moya when you were speaking, something I noticed is that both of you give credit to the people who create these specific hashtag campaigns or other online activist campaigns. And I think that that is a practice that is not widespread regarding Twitter in general. But it strikes me as having an important social justice component and a component that's related to giving credit to who the movement leaders are. So could you talk about that a little bit?
Moya: Sure. I definitely learned early on that citation is political and who you choose to cite and who you don't cite is really important. And I think Vilissa you actually noted something in an article that me and my friend Izetta did that we didn't have a good citational practice around some of the new black feminist disability activists who are on the ground every day. And that was something that was in part of our article but we didn't fight back against the editors enough to say like actually we need all of these names. We need all of these names here. And so definitely something to consider going forward.
Moya: We're working on another article looking at the hashtag BlackGirlMagic and the firestorm that happened when Linda Chavers, who wrote about that hashtag in Elle Magazine, said that she didn't actually think that it was a very useful hashtag because we're forgetting about the black women with disabilities specifically. And she used her own chronic illness as an example of why she didn't like the hashtag. And so we were trying to think through that, like how is this hashtag useful? But also, maybe, what are the limits? And there are a lot of disabled women who find that hashtag very helpful, who think BlackGirlMagic is actually something that describes their experiences as being black disabled women.
Moya: So I think for me it's really important to name all of the people and particularly CaShawn Thompson who's the person who created the hashtag BlackGirlMagic, making sure that we are linking people to the way that they have created terminology that helps us better understand our world and figure out what it is that we want in our world. And part of that is letting people know that actually all of this has an origin. BlackGirlMagic didn't just magically appear, it was something that CaShawn Thompson thought about and she had something to say about it. Similarly, Linda Chavers and the other black women who were responding to it and find it useful and they're trying to challenge it. Like we want to make sure that everybody is in that conversation because it's important to make sure that we aren't erased from the conversations that matter to us.
Vilissa: Yeah. And I thank you for bringing that up 'cause I was a little nervous in kind of calling that out in a way because I had skimmed the article, people are like, "Oh yeah." Looking at it I was like, "Oh." And I really ... Thank you for mentioning that because it's so important for us review how a piece about black feminism, disabled women are always erased from that conversation.
Vilissa: And when I read that, it felt like a little bit of my heart like, "Okay." Kind of like, "Here we are again with that." And thank you for taking that accountability with that 'cause that means so much. And it means that we're seen and that our stories matter. And I hate to hear that you guys had that pushback but I know when you have things like that, that does happen. So thank you for providing that background on that.
Vilissa: And it's funny that you was mentioning the BlackGirlsMagic hashtag because a couple of years ago, I did a series called Black Disabled Girl Magic where I highlighted some of the black disabled women that I know and the work they're doing. And CaShawn she has such a great hashtag and for me, I do see myself in that so I don't feel that detachment. But when I made that series, I wanted to specifically focus on disabled women and what our magic is. Because I feel that where we have these kind of blanket hashtags, where we all think everybody is included but we're really not. And I think sometimes we have that disconnectness in truly understanding who feels seen and why, and particularly for those of us who are never seen. And I just feel that taking that deeper look into those hashtags in that way like you're doing is so important so that we all could see why we are part of that conversation or even discuss why we feel like we're not.
Vilissa: And I think that having that open dialog to where people can have such a good discussion on why people don't be seen and the history of that. Because there's a history as to why people don't see themselves, particularly in our community as black people, there are certain identities you don't see ourselves 'cause we don't get to talk about ourselves. Or people be like, "Oh. You're not disabled, you're just different." And it's like, "No, this has a name. And it's okay to say disabled. And we, the black community, have a lot of work when it comes to self identifying as disabled and being proud of being disabled.
Vilissa: And I know that for me, I tell the story all the time how I did not understand that disability was identity. And here I am as a social worker having the type of background and not having that connection until I met other black disabled women where I was like, "Oh okay, this is ..." And I put an identity to who I am like my blackness, like my womanness and that's okay. And it's not something out of pity and it's not something that just medically understood. So I really think that having a discussion about these hashtags and how people feel about them is so pivotal so that we can all celebrate what they're created to mean for us.
Aimi: I love the word created and I've noticed Vilissa on your Twitter profile, it actually says you're the creator of DisabilityTooWhite, which I think it's really important. And it goes to something Moya you've also written about kind of cultural production and being able to think about information or concepts and terms as things that are produced just like our technology or anything else. And it seems like hashtags are one of those things where an extraordinary amount of labor goes into producing the conversations and also into coming up with the terms that are going to be part of the hashtags in the first place that make people use them. But maybe a lot of people don't think about how to design a hashtag effectively, so I wonder if we could talk about how you do that. Thinking about Twitter as a site for design or engineering beyond just coding, how do you create a hashtag that people will actually use and that will have the kind of critical meaning that you're intending for it to have?
Vilissa: I think that for me my hashtag just kind of popped in my head. Like it was just this conversation that popped up. And xoJane article was circulating at the time about disability and beauty and I had stumbled upon a conversation on Twitter that Alice Wong and others were having about the article. And it featured white disabled women and they were all discussing about, "Yeah, this is a great article about disability and beauty but it's very white centered." And I was just joining on the conversation and the hashtag just really pooped into my mind and others started using it and it's kind of took a life on its own.
Vilissa: And so I think sometimes you just have that eureka moment. You don't really think about it, it just sometimes it can be very passion-driven that that split second you put it out there, people connect with it and it goes. And sometimes you do take some time to brainstorm a hashtag if there's a particular purpose that you have for it, put it that way. But sometimes I think it's kind of a mix of sometimes it's just a right timing and sometimes you just really study what is it that you want people to see and to pop in their heads when they see that hashtag on their feed. So I think that for me it's either or. My experience is just was half chance.
Moya: And I think there's another piece of it too that part of what makes a good hashtag is its ability to get stuck in your head. And so that means simple language, that means something that people can connect it with and then it can move. So there's a moment where hashtags might follow in a similar vein, so you get a bunch of hashtags that look like are structured similarly. So I'm thinking about when we have the hashtags of people who have been murdered by the police so it's the person's first and last name. Like that's a very common hashtag frame that we know and we know what that means when we see it. But then there's also hashtags like ... What was the one that started it all? It wasn't ... I'm trying to think.
Moya: So there were a series that came forth. Do you remember this Vilissa? It was something for white women. Solidarity is for white-
Moya: Solidarity is for white women but it came after another hashtag and then it came ...
Vilissa: Your slither showing.
Moya: Your slither showing, yes. That was another one kind of in that same little moment. So they had a similar structure that I think people could recognize and see the pattern what people were trying to do in the next iteration of the hashtag and what new things people were trying to bring to the conversation. So for me, I think that's a really important element of hashtags, is trying to make something that fits and connects with the current cultural moment and what people are thinking through, and making it small enough that people can kind of hold onto it.
Vilissa: And I do want to touch on something you have brought up Aimi about being a creator of a hashtag. And I think it's very important for when you create these hashtags, that you do own your body of work. And it kind of goes back to that whole citing people and to understand ownership. But people will try to ... They'll probably steal hashtags like it's so ridiculous. It's not like you can't find where the origin, the story of the hashtag came from. And I know that I've been very purposeful to protect my intellectual property. And I've been very purposeful making sure that other people know to protect theirs as well, as particularly as black women and femmies. People will steal our stuff easily because they dismiss what we create even though they understand the value, they see the value but they don't value us as a creator.
Vilissa: And I think that's so important when we talk about being ethical. I know as a social worker like I was really surprised at how much prejudice goes on and I'm like as a social worker, we study these things or learn how to be ethical in practice. So if I am going to discuss somebody's hashtag, it is my duty ethically as a social worker to give that person credit, to talk about why it's impactful. So I don't really understand the disconnect people have in respecting somebody's body of work and dismissing the poignantness of hashtags and respecting that as a body of work, as you would somebody's book or somebody's article. I know that Trudy talks about that all the time in her particular work and her experience with being prejudiced.
Vilissa: And for me Trudy is the one who taught me so many things. Trudy was one of the first black femmies I saw talk about ableism in a way when I first started on my activism. So to really hear her plight and having her fight for her own work, made me conscious of what I need to do to protect my body of work when you see other people go through that. And that's another thing ...
Vilissa: So yeah, I'm going to say I'm a creator of something because it's my body of work and everybody should own their body of work, even if it is a hashtag. Don't dismiss that. By the way hashtags are being used in academia. These are hashtags that are being used in articles so don't dismiss the poignantness of these hashtags in the broader society, in our social on justice spears 'cause they're being seen and they're being used. And you should demand that they be cited correctly.
Moya: I mean, that's definitely something that happened with me with misogynoir and Trudy and I wrote about that specifically. Like how when I created the term, I definitely did not think that it would take off the way that it did. And it really did because Trudy was so good about talking about it and writing about it on her blog and really helped it spread and helped a lot of people see it. 'Cause I think otherwise, it could have been stuck in academia. It was in my dissertation, it was in some other articles that I wrote on the Crunk Feminist Collective.
Moya: And so I think her lifting it up is part of why people heard about it. And so when we talked about it together, part of that was to say like, "Yes, I did create this term but Trudy did also labor in terms of helping other people hear about it and learn about it."
Vilissa: That's where I learned about it, was from Trudy when her blog was active. I was like, "Oh, what is this?" 'Cause I don't identify as a feminist, I identify as a woman which is due to Trudy body of work when it comes to talking about womanism. So I think that honestly Trudy has really taught many of us who was coming into on activism in the middle part of the decade when her blog was active and educating us on those terms. 'Cause that really empowered many of us in learning about things that you wasn't learning about in school if you went ... You heard about feminism and that's it. You didn't about misogynoir, you didn't hear about womanism so yeah.
Aimi: Can you all tell our audience Trudy's last name and the name of her blog?
Moya: Trudy doesn't use her last name. She just goes by Trudy but her blog still exists and it's Gradient Lair. She's not actually blogging on there but you can still go and see all of the posts at gradientlair.com.
Aimi: Okay. I'll definitely include that in the links in the show notes for anybody who wants to go and read them. Yeah, thank you. Yeah, so kind of going back to misogynoir, I was thinking about this relationship between kind of terms and concepts and hashtags that sometimes Twitter or hashtags are ... Like academics will think of that as not proper intellectual work whereas academics are constantly creating more and more precised terms for things in order to enable conversations to happen. And of course the digital humanities have contested this treatment of Twitter or blogging or whatever as kind of less scholarly. But it seems many of the methods and approaches to citation and the creation of terms are similar and shared across these worlds.
Aimi: And one thing I've been wondering about just kind of listening to you all talk about this is if someone was going to do their due diligence, for example to find the proper creator of a hashtag, how would they do that and how is it similar or different than finding the originator of a term? Because with terms at least like someone will write an article and they'll see, "I am creating this term, it is my term. You can cite it." But with a hashtag, how does that work so that people can engage in those ethical citation practices?
Moya: That's a really great question and I think it's different but it's not hard. One thing that you can do especially when a term is new or a hashtag is new is you can see who's the first person to post it. So if you're in that first week or so of when a hashtag is created or it pops, you can just go into the Twitter feed and go back and see pretty quickly who was the first person there and also who's tweet of the particular hashtag has the most retweets, etcetera. Like that can kind of give you a sense of who is responsible.
Aimi: And then there are other hashtags that have happened before where people have done some of that documentation in traditional print media or even digital media. So in terms of misogynoir, which has become a hashtag but as a term, some of the earlier documentation of it was in online digital publications like Mike.com. And then actually I think a undergraduate student wrote a Wikipedia article about misogynoir for a class project. And I think that's another thing when you think about digital humanities and what we can be doing, one of the things we can do is help people who have created hashtags by doing that digital labor of creating the Wikipedia articles about some of these hashtags that have happened and making sure people know who is responsible and who's created this new frame or new way of engaging in conversation that we find useful and helpful.
Vilissa: And I think also kind of going back to that ownership thing by putting it in your Twitter bio I know that's where I have mine. 'Cause usually if you see a hashtag the person put in their bio, their profile be one of the first ones that you see if you do that search. So really owning your own work, literally in your bio, really helps if you ... I know Alice Wong when the hashtag went viral, DisabilityTooWhite went viral, she created a story ... Well, now debunk Storify for it. So that's much like a digital collection of those first tweets of the conversation that happened during the first 24 hours. So really finding that way to create a database about it. Or if it goes viral and you get interviews, that's usually one of the ways where that gets solidify as to who the creator is. I know that's happened with mine particularly.
Vilissa: So finding ways to create that digital footprint is really helpful even if this goes viral within your own community, having somebody write about it, having somebody interview you about it and having that title in the headlining piece of their podcast or their article, that's one way to take on a show that I've seen people find. I know that's worked for me so that people can't late claim or Columbus your body of work as their own.
Aimi: Yeah. Those are really helpful tips and I'm thinking about how to teach students how to create this documentation or also how to have conversations with scholars about it. Like I kind of wish there was an archive or a Google Doc spreadsheet or something that kept track of who the originators and creators of different hashtags are because sometimes when they get too big, it's like impossible to go back.
Moya: That's true.
Aimi: And then people aren't having the conversation about authorship. It's not going to be lost but it's harder for a person who's just entering into the middle of the conversation, even if they want to, to be able to know who to cite or even to think to cite. 'Cause I still think a lot of people don't think to do that.
Moya: That's definitely something that with our hashtag activism book is that we want to create an online database that does exactly that. So that's the next piece. The book is done but we want to kind of do the next piece which is how do we make sure that we credit all of the hashtags that people have made in the spirit and then kind of what was the moment that really pushed that hashtag to come into being?
Aimi: That's great. When is your book coming out Moya?
Moya: Hopefully, it should be out by the end of the year so we just got our edits back and we are going to be responding to those very quickly. And then hopefully we'll get some proofs in the next couple of months. So we'll see.
Vilissa: That's exciting.
Moya: Yeah, thank you.
Aimi: And do you have a coauthor? You said we.
Moya: Yes. I have two coauthors. Sarah Jackson and Brooke Foucault Welles who are professors also at Northeastern University.
Aimi: Awesome. Do you all have any questions for each other? Any kind of burning things that you want to ask each other or talk about?
Moya: Yes. I have a question. This is a question Vilissa I've been thinking about and just trying to think through kind of what the responsibility is of digital humanities in academics to folks who are using hashtag activism in their life. Kind of what do you want academics to consider? What do you need academics to do better than they're doing?
Vilissa: I really want academics to, when it comes to disability, really respect the work that disabled people are doing that's outside of academia. Understanding that there are many systemic structure barriers that prevent many of us from getting the level of education that we deserve, particularly those of us who desire to go to higher ed and even K through 12, just keeping it real through the whole institution.
Vilissa: But I really want academics to really respect disabled people and the work that we do and that starts with their students. Really addressing that ableism that is really deeply rooted on academia as well as the racism that can go hand in hand for disabled people of color. For me, I think that's the biggest thing, respecting the work that we do by citing us, not dismissing on activism as just angry people or as just not really worth being cited, not equipping their students to cite and learning how to do that fully. I think those have been some of my biggest complaints.
Vilissa: Also ... I'll come back to this one point 'cause I really want to make sure I word it correctly. And just really ... I want academics to learn how to engage, and then not just with disabled people, but engage their bodies of work that in a way that breaks it down for everybody. And if you want to reach those communities on those "fringes", you need to talk in the lamest terms. And for me, as somebody who has the chronicle education, has a master's degree, state board license, I can understand this stuff. But somebody who has a secondary education would not. Language is very important.
Vilissa: I know that there is a time and place to use scholarly language but also if you want your body of work to be relatable and to be used outside of the field, learning how to make that accessible. It's about accessibility, and doing a better job at that. There's a lot of academics who are not disabled that take up space. And you need to understand that you're taking up space within a identity that is already ignored. You have a privilege when you have that PhD, that EDD or whatever letters that come after your name or before your name, you are already looked at as an authority compared to somebody who is not, who don't have that same privilege. And we infiltrate a space where you identify, where you don't have any connections to it and you are looked upon as an expert. That is very frustrating for those of us who live with these identities, who are the true experts.
Vilissa: And I want academics who are not disabled who are in disability spaces to understand that you have a responsibility to uplift your disabled colleagues in your particular spaces. Even if you're not in disability studies or if you somehow touch on disability in your work, understanding that you have the same colleagues who are not getting the same opportunities that you are. And to understand that and to step aside and build someone else up and support somebody else's work in your spaces. 'Cause academia is hard. A lot of people don't self identify as disabled within academia spaces. That's real because there are consequences, particularly if you're trying to get tenured.
Vilissa: So I really want academists to understand to how ableism function within academia. And if you are a not disabled academic talking about disability, how your voice is viewed over others and what you need to do better and be accountable for.
Moya: Yeah. I want to just build on that. I mean, I think there's something so important about what you said about how people identify and kind of the choices people make about identification. And part of the article that we've mentioned is the article I wrote with Izetta Mobley. We were talking about kind of why black people in particular might be reluctant to identify as disabled. And one of the things I shared in the article is that in my family, there's a lot of people who are disabled but they don't identify as disabled. So there's a way that the stigma attached to the identity is still really hard. And even for people who are in the academy and people who do disability studies work, it's still like another level to kind of claim disability as an identity.
Moya: And then on the flip side I also have mixed feelings because I have students, white students in particular, who are very comfortable identifying as disabled and sometimes use it to not have to deal with or address racism, that happens or comes up in the classroom. So I think there's some way that we've got to figure out how to deal with this better. Like how do we talk about the way that our different identities intersect and what does it mean to be visibly disabled also versus people who have invisible disabilities as well? Particularly in the academy, which comes up I think a lot. Because so much of the ableism of the academy is forwarding people who the academy doesn't think are disabled or who are able to pass as abled bodied enough that the university doesn't mess with you as much maybe, I don't know.
Moya: But I think that this question of accessibility is so important and kind of why I think we have to be clear about what our goals are. Is our goal to make disability studies a really important field in the academy or is our goal to actually help disabled people and actually change the conversation that's happening in the world and change the way that disabled people are able to live? Because for me, I think there are a lot of conversations that happen in the academy that aren't actually useful to a lot of people for exactly what you named Vilissa, that they're inaccessible and they always sort of end up being about, I don't know, refining the conversation of academics speak, which is so inaccessible to so many people. Like what does it mean to bring this conversation to a new space and to a new place?
Vilissa: And I think you bring up a good point about who identifies and who's comfortable with identifying within academia and understanding that privilege as well and understanding how a white disabled people are accountable in knowing that their disability doesn't nullify their whiteness. Which is why I am infamous for saying because it doesn't. And to understand that you can be both privileged and oppressed at the same time.
Vilissa: And I think that white colored people especially don't get that because they don't have to, while we as disabled people of color have to. And if you are of color and disabled in academia, you have a much bigger battle hill to climb. And I don't think we give enough space for this particular group of academia to really safely discuss their own stories.
Moya: Vilissa your comment also makes me think about to the digital and the digital as a place where we talk about what it enables us to do. That it really helps us create so much online and have conversations and make connections. But then the actual digital infrastructure ends up disabling a lot of people of color. So I think about often the minerals that power our machines are harvested by black kids in the Democratic Republic of the Congo. It's their labor that extracts the minerals that powers our smart devices, and then they get disabled in the process. Or people who make the Mac products in China. It's the labor, that's disproportionately women's labor, that is creating these machines and then it ends up to all kinds of disabling effects in their lives because of the problematic working conditions by which they're able to create the machines that we rely on.
Moya: And so for me, I want digital humanities and I want the academy to also take that up as well. How does our own investment in the digital actually create this other stuff that gets invisibilized or doesn't get to be a topic of conversation too.
Vilissa: Right. No, let me just say, excellent, excellent point.
Aimi: So I guess that brings me to a kind of concluding question. Bringing us back to the idea of design is what would it take to design a better world?
Vilissa: White and non black people when black issues come up, you need to be listening and you need to be paying attention to how you can be a better co-conspirator for certain things, how you can assist in people's efforts in spreading their knowledge, spreading their body of work, financial supporting what they do. It's going to take more accountability because there are many of our students work for nothing. So be very mindful of how you absorb and digest information and how are you helping creators of hashtags, of bodies of work that you consume? Be very conscious of that.
Vilissa: And I challenge why non black people of color expect me to do that. So just be very conscious of your consumerism of people's body of work. And how do you do so ethically? How do you cite people? How do you give credit? How do you boost somebody's work even if you cannot make a financial contribution, retweeting, sharing. Connect to somebody with the opportunity, with somebody you know, all those things are free. And just making more effort to support the work of, particularly black women of femmies and bringing it down to black disabled women of femmies. Because it is black women of femmies who have always led the revolution within our communities no matter what they is.
Vilissa: Disabled communities, queer communities, civil rights movement, it is always the black women of femmies who are putting in their time, literally at time is putting their bodies on the line to get us free.
Aimi: Wonderful, thank you. And Vilissa do you have a Patreon or something else like that, that our audience can know about to compensate you for your labor?
Vilissa: Yes, I do. I started one in July and I host a mini podcast on there as well as write two long-form pieces and a top five list. And one of the things I do with my top five list is I support a black woman of femmie on Patreon so that's my way of giving back to black women. Paying black women for their own body of labor. So I pick a black creator each month to support. So that's me putting my money where my mouth is in a way because supporting black women of femmies is a party for me.
Aimi: Thank you for telling us about that and also for modeling that support.
Vilissa: Thank you.
Moya: I'll add that I'm part of a black feminist giving circle called SUSU and we give money to black feminists organizations. Whatever we raise, we all contribute a little bit and then we review the applications. And we have a very low stakes because so many granting opportunities want you to write all of the things that you've ever done and all of this documentation to prove that you're deserving. But we kind of trust the people who are recipients of these grants and just trust that they're going to do what they said they're going to do.
Moya: So I think that's another way to kind of shift this world that is very, I don't know, materialistic and wanting people to produce certain things that they feel are valuable. And in that regard, I think one of the challenges or things that I imagine would make design different was if we weren't designing for consumerism, if we were designing actually for human life. If we value people in a different way which we don't know it's all about servicing. And even the way we think about disability and ableism is built on our ideas about work and what people should be doing and that you need to work for a living.
Moya: I think so much would shift if our world wasn't structured around a five-day work week and this idea that you need a salary to survive, to make the things that you need to live. If we just assumed and valued all life just inherently, I think we'd have a very different world. And unfortunately, those aren't the kind of conversations we have enough of in academia or in the rest of the world. It's not like we have the time to really go there but that's what I feel like radical disability justice brings for me. It questions everything. Like do we want to make work more accessible or do we want to get rid of work altogether? I don't know.
Vilissa: No, that's great because ... I mean, the disability space we talk about the value of work and how some of us cannot work and feeling devalued because of not being able to contribute in a capital society. And how many of us may want to work but there are obstacles whether it's due to our disability, whether there's systemic obstacles such as government benefits. You can't too much, you're going to lose your benefits. People have to decide, "Do I work or do I get a little of that money by being a problem?" Having those understandings of how capitalism really disable people even more.
Aimi: So many of other podcast episodes are picking up on this theme that a lot of things that are designed for disabled people, and I use that word for really intentionally, often by non disabled people, are designed to make disabled people more productive. And that's what access looks like for certain people, certain design practices. And it seems like part of what hashtag activism and these various forms of labor that you all have been talking about on the internet, redistribution, Patreon, what a revolutionary thing, that you can pay someone for their intellectual labor outside of a kind of academic salary sort of framework.
Aimi: Is that it's getting us to think about labor rather than just productivity. And recognizing that work gets done and it takes many forms and it feels different for different bodies and has different costs. But that there are ways of supporting that labor and kind of supporting life the way that Moya you're describing it. Without having to basically plug disabled people directly into industrial machines and be like, "You're the batteries that are going to make this thing work better." So it seems like maybe the internet is enabling a lot of different ways of thinking about disability and labor that designers should be thinking about as well.
Moya: Absolutely. And not just exploiting. I just heard some stuff lately about how big insurance actuaries are trying to exploit autistic labor because the repetition of things. It's like, "Oh, this is the perfect kind of job for you 'cause of this belief about autism." And it's build as a diversity initiative. Like we are making our workplace more accessible because we are employing these people who are particularly good at this particular thing. But again, it just sounds exactly like what you said Aimi, just plugging people in. "Oh, we've got a perfect spot for you in the industrial machine. You fit here perfectly."
Vilissa: But it also pigeonholes people. What if you don't want to do that?
Vilissa: I have options as to what their labor look like, what passion labor looks like. And if you just have just one category for people, then for those who don't fit that category, how does it make them feel? Everybody deserves options, I don't get why it comes to certain industries they don't see that. Yes, some people may want to do that particular thing and that's wonderful. And as wonderful as there's a path for people want to do that particular thing. But you need to open the door for more opportunities so that everybody who desires to contribute something that's worthy for them can do so freely.
Aimi: Well, this was such a wonderful conversation. I'm so grateful to both of you for your time and for your engagement. And I'm looking forward to sharing this episode with our audience.
Vilissa: I'm just glad to be able to meet the both of you and have this conversation. Moya, your work has been instrumental in my work and so it's trying not to fan girl over here a little bit. But this has been probably one of the best interviews I've done. I've really enjoyed talking with you both today.
Moya: Absolutely. This has been a joy.
You’ve been listening to Contra*: a podcast about disability, design justice, and the lifeworld. Contra* is a production of the Critical Design Lab, Kevin Gotkin, Aimi Hamraie, Cassandra Hartblay, Maggie Mang, Jarah Moesch, Leah Samples, and Rebecca Rahimi. Kevin Gotkin produced the intro. Cassandra Hartblay designed the logo. Follow us on Twitter at @criticaldesignl and learn more about our projects at http://www.mapping-access.com.
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