This week on What's Next? and the WBFO Disabilities Beat, Disability Reporter Emyle Watkins sits down with Dr. Sami Schalk, a disability scholar, professor of Gender and Women’s Studies, and author of “Black Disability Politics." They discuss her book and the intersections of race and disability.
- Black Disability Politics by Sami Schalk, available from Duke University Press
- Alondra Nelson's book: Body and Soul
- Dr. Huey P. Newton Foundation Inc. collection
- Ramp Your Voice
- Patient No More exhibit from the Longmore Institute
- PBS Special: "Brad Lomax: Creating Communities of Care"
This interview appeared in full on What's Next? on Monday, February 10th. A shortened version of this interview will air on the WBFO Disabilities Beat on Wednesday, February 12th.
TRANSCRIPT
This is a rush transcript provided by a contractor and may be updated over time to be more accurate.
Emyle Watkins: Thank you so much for joining me on WBFO.
Dr. Sami Schalk: Thanks for having me.
Emyle Watkins: To start, I'd love to have you share a little bit about you, your work and why you decided to write Black Disability Politics.
Dr. Sami Schalk: Yeah, so I'm a professor of Gender and Women's Studies at the University of Wisconsin-Madison. My research focuses on disability, race, predominantly Blackness and gender and contemporary American literature and culture. I'm a fat, Black, queer, disabled woman, and yeah, I've been in the field of disability studies for a long time. Yeah.
Emyle Watkins: And why write this book? Why was it so important in that moment? I know you also made it so people can actually download it as a PDF so it's accessible to people.
Dr. Sami Schalk: Yeah. I wanted to write this book because, as I said, I've been in the field of disability studies for quite some time. I started taking classes as an undergraduate, I was attending conferences throughout grad school, and it was pretty common that I would be the only Black person in the room, potentially even at an entire conference. And even though there were other people writing about Blackness and about race in the field of disability studies there just weren't many Black people in the field, and there still aren't a ton of us. And as someone who was really trained as a Black feminist theorist, I've always felt like these fields needed to be more in conversation with one another.
And so this book, Black Disability Politics really became my attempt to not simply educate people in disability studies about the particularities of the Black disabled experience and Black disability history, but actually really try to bring folks in Black studies, AFAM (African and African American Studies) studies, into the field of disability studies, because I feel like historically the field has been very white, and then we've had folks trying to figure out how to write about race, as opposed to bringing in experts in race and helping them figure out how to think about and talk about disability. And so I really wanted it to reach that audience.
And then of course, because it focuses so heavily on activists, advocates, organizers, change makers, including interviewing people, I felt like it was really unethical for me to produce something about activism that isn't accessible to activists. If the point of the book is to get more people to think about this, especially folks outside the academy, then I have to make it accessible to people outside the academy. And so I was lucky that I had research funding that was able to be used to pay to make the book open access so now people can download it, share it, use it in reading groups, and use it in organizing groups to really think about these issues without having for everyone to have to buy a book.
Emyle Watkins: Absolutely. And can I ask, are there certain barriers to Black academics going into the field of disability studies that you've noticed?
Dr. Sami Schalk: I mean, I think the whiteness of the field and just feeling isolated is part of it, but it's also, there's so many people that just don't know. There's so many people I think in Black studies who aren't actually talking about disability. They're talking about health, they're talking about the disabling impact of police violence and lack of healthcare access, right? Medical racism, these things as disabling forces, but they just don't have necessarily the lens and the connection to a disability community or to disability studies, to be able to bring that in. And so that's my hope with the book is that more folks can see, oh, my work is already kind of doing this, let me learn a little bit more. To have that lens to be able to bring that angle to the scholarship that I'm already focusing on.
Emyle Watkins: And you say in your introduction that you, "define Black disability politics as anti-ableist arguments and actions performed by Black cultural workers." What are some of these arguments or actions you found and carry with you or think about often?
Dr. Sami Schalk: Well, I think one of the arguments is really thinking about the disabling impact of racism. Often in disability studies and in disability communities, there's this sense of disability pride and not really wanting to focus on the reason someone is disabled or really saying disability can happen to anybody and it's just kind of random, but we know that there are populations that are more likely to become disabled because of social circumstances, whether that is race or class. I think in this day and age we also can think about trans folks being more likely to be disabled by the transphobia of our culture. Right?
And so I think that a lot of Black disabled activists and Black activists who are thinking around disability are often talking about it not from the place of, what are we doing for disabled people? But looking at these structures to say, "These structures are disabling us and then we are being blamed for our disability." Right? We're being called to say, "Well, you're not good enough. You're inferior in these ways without recognizing these circumstances that are either physically or mentally disabling." And so I think that's a major thing that I like to pay attention to and think about how we talk through that disabling impact without making it seem like disability is the most horrific thing that could ever happen to a person, without leaving the people who have been disabled behind to only focus on the system. Right? So that both and approach is really important.
And then in terms of actions, I think really a lot about care work. I think about the care work that has had to happen inside of black communities when social structures, governmental structures have left us behind. And that care work is so intrinsic to disability community as well. But again, we're not necessarily using the same language, but that action of, we take care of one another, that there are, I've met people that are like, oh yeah, everyone in my family has diabetes and we just know how to prepare the food right and to check in on each other, but we don't think of ourselves as a disabled family. Right? But that care work is intrinsic to really recognizing that we take care of us right.
Emyle Watkins: Hearing you talk about that, especially as someone who, my whole family's disabled, I know what you mean, but we're also white, and that was just always the thing we talked about is like, "oh, we're all disabled." And that's something that stood out to me in your book is talking about identity and how in white communities and Black communities, that idea of identity is kind of different.
Dr. Sami Schalk: Yeah. I think there's a big chunk of the book where I really talk through this issue around identity. And for me as a Black disabled person, it took me a long time to identify as disabled, even though I had been working in the field of disability studies for many years before I identified. And some of it was because of these very narrow, state-based, privileged positions of understanding disability to be associated with having a diagnosis or receiving certain kinds of care, being on a medication. And so it really took me a while to feel like I could claim that label. I also think about in college, I was like, well, I don't receive any accommodations, so I'm not disabled if I don't get this kind of state support. And I think that that's how a lot of people, particularly Black folks think about disability. They think of it as, if you're not on disability, you're not getting state aid, then you're not disabled. And so the way that we associate it with these state and medical labels as one reason.
But then also, the label of disability has been used against Black folks for so long through things like scientific racism through shuttling Black children into special-ed classrooms without a diagnosis or with a new kind of made up diagnosis. So we know that it's been used to push folks out of receiving care and out of the community and to justify violence against them. And then now we think about it through this state lens, so it makes sense historically why Black folks have been like, to claim that feels dangerous. It feels dangerous, it's at risk.
I talk about in the book, one of the activists that I interviewed talking to some Black parents of disabled children and asking them, "How do you talk about your Blackness?" And they're like, "Oh, it's a point of pride. This is your culture, you never have to hide it. You never change yourself." And then he says, "Well, how do you talk to them about their disability?" And they're like, "Well, that's private. Nobody needs to know, it's nobody's business. You don't have to tell anybody ever at all." And so he was trying to bring out to them like you're saying then that your Blackness is this cultural, prideful, connecting thing, and a disability is a thing that you should hide and be private of. And they're doing it because they want to protect their kids from ableism.
But one of the things that I try to emphasize in the book is that you don't have to identify as disabled experience ableism. People are going to make assumptions about you. Even if you are a non-disabled Black person, people are still making assumptions about your intellect, about the way that you express your emotions that they associate with disability and you were being impacted by ableism because of the way that ableism and racism are so deeply intertwined. And so not identifying doesn't actually protect us. And so, one of the things that I hope the book can do is help folks start to grapple with that, with their own feelings around identifying as disabled, and understand it as a tool for finding community.
And that's ultimately why I ended up identifying more publicly as disabled after doing the interviews for this book, was that I realized that yeah, it's about finding your people. And then when you find that community, it also means that you can find culture and you can find support and care. I've learned so much through being more public about what's going on with my body and my mind and then folks saying like, "Oh, hey, did you know wireless or cordless heating pads exist? And you can actually be walking around with a heating pad if you're having trouble getting to work." And I'm like, oh, that's great. These tips and tools and things that we won't know if we're not talking about it and if we're not in community with other disabled people. And so for me, at the end of the day, that's what disability identity does, it brings us into community. It's a tool, it's a path. It is not about a certain fixed thing or identity, and it's definitely not about, now I get to check this box on some form.
Emyle Watkins: Speaking of community, your book focuses mainly on two activist movements, the Black Panther Party and the National Black Woman's Health Project. How did you decide to focus on those groups?
Dr. Sami Schalk: The Black Panther Party was the seed of the book. I read Alondra Nelson's book, Body and Soul, which is about the Black Panther's health activism. It's an incredible book, highly recommend that folks read it. And in the book, she cites Irving Zola, who's kind of considered one of the very, very early disability studies scholars. And reading her book made me realize that if I wanted to be looking at or finding examples of Black activism around disability, I needed to be looking much more closely at health activism, and really thinking about how the language of disability might not be being used but we're definitely talking about disabled folks. Right? So particularly for me, her analysis of their sickle cell anemia awareness and testing campaigns, it just clicked something in my head. And so it started with the Black Panther Party, and I really thought I was just going to write one chapter to just kind of give this historical overview or a historical precedent.
And then I learned about the National Black Women's Health Project, and I was already going to, their archives are at Smith College. I was already going to Smith for a talk. So I was like, okay, I'm going to check out their archive as well and just see maybe there's something else. And there was so much in both of these archives, between the Huey Newton papers are at Stanford, and then many of the newspapers are digitized now. And I ended up writing four chapters on these two groups. And so what originally was supposed to be one or two short historical chapters setting up the rest of a book became the heart of the book itself. And so with the support of my editor at Duke, we made the shift and then the book became much more about this history, than it was like the history setting up contemporary work. Yeah.
Emyle Watkins: And speaking of that contemporary work, you also spent time interviewing Black disabled activists for the book. What impacted you the most from those interviews, or what connections did you see between those historical movements you learned about and the activists you talked to?
Dr. Sami Schalk: I think this emphasis on health was really important, and health systems that we're still really thinking about the way that health systems were leaving Black folks out, making it more difficult for Black folks to not just identify or understand themselves as disabled, but to actually get support, accommodations, and care. So I think that thread was there. The grappling with disability identity and the label of disability was still there. And for me, as I said, these interviews are what helped me decide that I needed to publicly identify as disabled, even though I had an internal understanding. And definitely among friends, there was a shared understanding, but I wasn't saying that publicly. So those interviews really shifted that for me.
And I just became friends with some folks. I really just made connections and found a specifically Black disabled community that I didn't have before that. I was in the disability studies community, I knew plenty of disabled people, but there was something about having these long conversations with Black disabled activists specifically that really shifted my orientation to disability studies, to disability identity, and disability community.
Emyle Watkins: That kind of brings up a question in my mind. Are there not enough spaces for Black disabled people to just have that social space to have those conversations? Are those just not... I don't know, promoted, created as often?
Dr. Sami Schalk: Yeah, I mean, yeah, I think so. In part, some of us are really spread out, that's part of it. But because it is hard to get folks to identify as disabled, it can really be a challenge to come together under that umbrella specifically. And so what you might see is a group of gun violence survivors gathering to talk about their experience, and so many of them are talking about the mentally and physically disabling impacts of that, but they're not necessarily calling themselves a Black disabled group. And so what we see is much more folks gathering around specific identity or disability experiences. So saying this is a group of diabetics, but not necessarily just disability writ large. So I think that that's part of it.
But I will say by Vilissa Thompson is one of the folks that I interviewed for the book, and last summer she did a Black disability conference that centered particularly black disabled women and femmes, and that was incredible. It was the first time that I had ever experienced, even though it was a virtual space, a space where we were so centered and lifted up and so many people gathering and having conversations. And so her work is incredible, Ramp Your Voice, really just want to, yeah, shout out to Vilissa.
Emyle Watkins: And I think a lot of people have become familiar with the disability pride movement and have seen disability awareness campaigns. But as you point out in your book, they often center white people and white privilege. I guess as people are creating new spaces, new movements, new initiatives, what do these disability movements need to change or keep in mind in order to center disabled people of color?
Dr. Sami Schalk: So I think one, keeping in mind again, that folks might not identify as disabled. And so if you're putting out a call about an event or about a gathering, you might want to say folks with disabilities, but you could name some of what that is. If you have a chronic illness, if you have a mental health condition, you can name those things and provide people a lot of different language that might resonate with them in a way that just disability does not. So I think keeping that in mind.
And then I think the other thing is because there are a lot of Black disabled folks who are still new coming into a disability community, one of the things that I've seen in disability spaces that is really troubling is that we love our language. Before we started, you asked me about person first versus identity first language. Right? And there are certain words that we don't use inside of the disability community anymore. And so when somebody comes in who's new and they're using the wrong language, I've seen people get shut down, and particularly people of color get shut down by white disabled people who say, "Oh, we don't say special. You're not saying it right." And they're not actually listening to what the person is saying or trying to express or the question they're asking. They hear the language that we consider ableist, that we consider wrong, and they shut it all down. And if you're a person who's new to a community and you're coming in and there's a bunch of white people telling you that you're speaking in the wrong way, you're not coming back. You're not coming back.
And so if we can think about ways to be more generous and open and understanding that people are at different places in their identity journey and their understanding of disability politics, I think we're much more likely to build a broader multiracial coalition. And I think that's especially important in this moment of a continued pandemic where more and more folks living with long COVID, that's going to be a lot of folks in poverty, that's going to be a lot of folks of color because we know that getting early access to treatment is what prevents long COVID, and that it's less likely to happen if you are a person of color, a person in poverty. And so we've got all these people who are newly disabled and we need to not be yelling at them to use the right language right away, and actually trying to help them figure out, again, come into community first, learn, rather than pushing people out because they're not doing it perfectly immediately.
Emyle Watkins: Absolutely. I love what you just said about language because I do trainings on disability reporting, and a lot of times organizations approach me and they're like, "We want you to do a training about language." And I'm like, it cannot just be about language. So, there is no right way of talking about disability. A lot of times I feel like people just want some sort of dictionary of language about our community handed to them, and that doesn't exist because we're not a monolith. So it becomes a lot of just educating on history and ways of thinking about disability. Because I know Eric Garcia, who's another great disabled journalist, he said to me once, (paraphrasing) "what someone says and quotes to you is the Bible, you don't change it. You don't correct their language. It's how they talk about something." So, I'm really glad you brought up the language point because I think it's, people get so focused on correcting each other, they don't hear each other anymore.
And since it's Black History Month I do want to ask, how can people engage in learning more about Black disability history? I feel like a lot of our textbooks whitewash history and then also disability history just isn't included. So, what are some sources or resources that stand out to you as being accessible and a good place to start?
Dr. Sami Schalk: Yeah, the Longmore Center has a virtual version of their Patient No More exhibit, which is about Section 504, which currently I guess they're trying to take away. So, definitely a time to learn about the history of 504. Again, Vilissa Thompson's website, Ramp Your Voice does a great job of highlighting some black disability history. And then in terms of scholarship, I would say the work of Steven Nadler, Dea Boster, Therí Pickens, Dennis Tyler, Anna Hinton, these are all folks who are doing really great work highlighting either historically or through literature, culture, Black disability history. And so those are scholarly sources that I would point people towards.
Emyle Watkins: Fantastic.
And I'd be remiss if I didn't bring up the fact that Buffalo's East Side, which is a predominantly Black neighborhood, experienced a racist massacre on May 14th, 2022. And leading up to it and after it, Black activists on our East Side have been really pushing for more awareness of the disablement that happens because of redlining and because of food deserts. And I think that it's... I don't know, there's no other word than it's horrible that it took a shooting for it to get national attention that people are being disabled by redlining and food deserts still today. I guess I'm wondering, do you have any message for those Black disabled activists in Buffalo who are trying to keep this conversation around their community alive and funded and focused and cared about?
Interviewee: I mean, I think the main thing is to just keep going and that it matters. One of the folks that I interviewed, T.L. Lewis, T.L. talks about... T.L.'s work focuses on disabled and particularly Deaf folks inside of the prison industrial complex. And T.L. talks about how when you're working against these huge systems, so when we're thinking about redlining, so deeply historic. So much time to create and embed these systems, that you really have to focus on every single win.
And so I would encourage folks to remember that every person that you impact, every person whose mind you change a little bit, all of that is a win. It's not all going to happen right away, especially again, when we're fighting these very large systems. But the large systems and the focus on the big wins only is one of the ways that we lose sight, that we think that it doesn't matter what we do. And so I would just say that as you keep going, really take the time to recognize those wins along the way because they are making a difference, often in ways that are imperceptible that you won't see, that you won't know sometimes for years, but it's there. And so the work still matters, even if we're not seeing immediate structural or policy changes. It takes time.
Emyle Watkins: Thank you again for joining me on WBFO. I know your work's making an impact, it's impacted me. So, I really appreciate it.
Dr. Sami Schalk: Yeah. I just want to circle back to when you were asking for resources for Black History Month. I also want to say PBS put out a documentary, a short on Brad Lomax, and so I'm in it, but I think that that's another great one for folks to check out.
