Dr. Sami Schalk is a national treasure you might not have heard of if you’re not in certain academic circles. But no worries, because Schalk is an expert at making complex high-level theory feel accessible and engaging.
Schalk, who was generous to sit down with Daily Kos for a phone interview to discuss their research on Black disability politics, is currently an associate professor of gender and women’s studies at the University of Wisconsin Madison and author of BodyMinds Reimagined (2018). Schalk is also the author of Black Disability Politics, which was published in October 2022. Thanks to Schalk, this incredible book is open access.
“I'm a disability scholar,” Schalk noted on the phone. “I believe that access is a whole bunch of different things.”
And in this case, making academic research more readily available is part of that pursuit. As Schalk explained to Daily Kos, the public university she works at uses the “Wisconsin Idea,” which is basically the framework that the work of the university system should benefit people in the state (and beyond). Schalk says she was able to use research funds to pay her book’s press so they can make the book open access—indefinitely.
What does this mean in practice? While you can (and should, if you’re able) support the book by buying it, you can also read it online and download free PDFs of each chapter. Again: For free!
“I interviewed activists for this book,” Schalk added. “I didn't want to publish something that the people in the book could not have access to.”
RELATED STORY: Marisa Crane on shadows, shame, and role of the prison industrial complex in their debut novel
This interview has been edited for clarity, length, and flow.
MH: Why it is so important for people of any and all backgrounds to be informed about the particular barriers, obstacles, or nuances that Black disabled people face here in the U.S.?
SS: I think all of us are impacted by these systems in various ways, whether we're positively or negatively impacted by them. Disability is a category that we can all enter into at any time, right? And that's particularly true if you are a person of color who deals with environmental racism and medical racism and state violence, right? You're more likely to be disabled.
Often when people are newly disabled, they're struggling because they don't know disabled people and they don't have a disabled community. It's much easier when you already have a sense of how disabled people can exist in the world.
They're saying 20% of people who have COVID-19 end up with long COVID. The last data that I saw showed that Black people are much more likely to have long COVID. I would guess that some of that is about access to early care and treatment. You're more likely to have access to treatment if you have money and if you have quality health care, which we know white folks are more likely to have, so because of that we just have such an increase in the population of disabled people in Black disabled people in general. I think this is an increasingly important issue for folks to be aware of the various barriers that folks may face.
MH: You’re a professor. How might this manifest in the college classroom or campus?
SS: From educational settings, we've gone back to fewer and fewer online classes. I think people have gone back to more and more strict attendance policies, which really encourage people to come to school sick. Which used to spread everything, then we can bring that into workplaces, you know, where again folks are trying to push to move back to less work from home or no work from home.
MH: Can you give us an example of how this might impact someone’s everyday routine?
SS: We know that working from home for a lot of disabled people has been really beneficial. Even to have that as a part-time option, you know? Some days a week in order to deal with taking care of medical appointments. And also, just the decrease in the strain on your body of having to put on all of the work clothes.
I work on a university campus. How far do you have to walk from your car to wherever your building is? What if you don't have parking right at your building? You don't have control over things like temperature or the seating that you have access to necessarily.
As we continue to see how the pandemic as a mass disabling event impacts our populations in these large ways, we're gonna see more and more people who are experiencing disability and needing to adapt their lives to a different way of being. We can be prepared for that and create more access to create more flexibility.
MH: What changes would you hope to see from our elected officials now? What’s one policy change you wish you could see now?
SS: [laughs] Just one? I think going back to a lot of our early pandemic policies, right? So that's masking in public spaces, limiting the number of people in public spaces, and having access to COVID-19 unemployment leave, so that when they're not forced to go back to work as quickly.
One thing that, I think, has not happened in any kind of formal way that I would like to see is the creation of better policies around long COVID. We're really struggling with folks being able to get a diagnosis; a lot of people are being told it's “just depression” or that it’s a “side issue,” rather than something that's actually happening to their minds.
MH: Can you share more about why long COVID specifically is so important right now in terms of disability rights and access? What do folks need to understand about long COVID?
SS: I'd love to see more institutionalized support for folks with long COVID. Some sort of effort to really educate folks about what long COVID is and understanding that long COVID is a disability.
I think a lot of people who are dealing with it right now are often dealing with it in isolation. They're trying to get back to a nondisabled body that doesn't exist. All the data that we have on COVID shows that there are permanent changes to your body, including your brain. It is worse for every infection.
I think the more that we can move towards a public health effort to help people understand what long COVID is, and that it is a disability, folks can understand themselves as disabled people who deserve certain kinds of rights and accommodations.
MH: What are a few examples of ableism that able-bodied people might not recognize as ableism?
SS: I'm thinking about this in the context of being in the classroom, but I think it can work in other contexts, too. We make an assumption about the way that someone shows they're paying attention. They’re looking up there, sitting still, they're looking you in the eye ... Maybe they're taking notes, right? But for a lot of folks, that's not the way they pay attention. They might actually need to be moving or looking somewhere else or doodling and they're actually paying attention and listening quite well.
Some college classrooms don't even allow laptops, they only allow handwriting. They’re creating conditions in which we've decided this is the only or the best, most desirable, way for folks to pay attention, making an assumption that we all pay attention in the exact same way and that our brains work the exact same way.
I think another form of ableism that some people think they're doing the right thing is that people will see someone pull into an accessible parking spot, you know, they've got a license plate or sticker or whatever they need, and the person gets out of the car and they walk away, and whoever is watching, they think: That person doesn't look disabled to me.
So therefore they're going to intervene, right? So they're gonna be like either directly confront somebody or leave a note on their car, or like call the police about this car, right? But they think that they are doing some good by reporting someone that does not seem disabled to them using a disabled parking spot.
MH: What lesson do you think abled folks as a whole can draw from the parking space example?
SS: I think that folks should remember that disability looks a lot of different ways. Someone can be very young and healthy-looking and be in an extraordinary amount of pain. You just don't know.
I think with the increase in long COVID, we're seeing more and more of this. People who look “fine” and yet ... I think that's another problem with ableism, people making the assumption: I can see disability, or I can detect disability with my eyes.
MH: What are some examples of allyship that should become standard?
SS: I think in a similar way of not making assumptions about who is and is not disabled based on what I see with my eyes, not making assumptions about what people might need in a space.
I think about going into a meeting and not even asking: Does anyone want me to turn on the autocaptions? Instead, we can automatically be doing that, right? But we really assume that everyone is not disabled until stated otherwise.
If we went out of our way at the beginning of gatherings that we have, whether those are personal gatherings or work gatherings, professional or public ones, if we make an effort to say: What are the things that you might need to be in the space for as long as you need to be here, in a way that is comfortable and good for you, we would find out so many more people in our lives make their own secret adaptations.
Like I bring my own chair sometimes. if I don't think there's gonna be a chair that's comfortable for me. All the things that we just learned to do on our own to make the world more accessible to us because of the assumption that everyone is not disabled.
MH: What did I miss? What do readers absolutely need to know?
SS: This is an academic book from an academic press. It's based on scholarship. And it really is written in this phase of accessibility, it's written in a way that is hopefully readable to a lot of people and hopefully interesting to a lot of people.
Whether or not you're Black or disabled, or in these fields in any way, whether or not you're interested in this history that I cover in this book. I really target activists and organizers and cultural workers in two sections that specifically say: Here are these lessons we can grab from the history. Now, how can we apply that to our current work, to our contemporary work, to be better about Black disability politics and the way we organize?
That was an intentional part of making the book accessible … trying to write it in a way that wasn't only legible to like, 20 people with PhDs. It really was trying to be a book that a lot of different people can read and benefit from in different ways.
Remember, you can check out the book here, order it here, and request it at your local library as well!
Schalk, who was generous to sit down with Daily Kos for a phone interview to discuss their research on Black disability politics, is currently an associate professor of gender and women’s studies at the University of Wisconsin Madison and author of BodyMinds Reimagined (2018). Schalk is also the author of Black Disability Politics, which was published in October 2022. Thanks to Schalk, this incredible book is open access.
“I'm a disability scholar,” Schalk noted on the phone. “I believe that access is a whole bunch of different things.”
And in this case, making academic research more readily available is part of that pursuit. As Schalk explained to Daily Kos, the public university she works at uses the “Wisconsin Idea,” which is basically the framework that the work of the university system should benefit people in the state (and beyond). Schalk says she was able to use research funds to pay her book’s press so they can make the book open access—indefinitely.
What does this mean in practice? While you can (and should, if you’re able) support the book by buying it, you can also read it online and download free PDFs of each chapter. Again: For free!
“I interviewed activists for this book,” Schalk added. “I didn't want to publish something that the people in the book could not have access to.”
RELATED STORY: Marisa Crane on shadows, shame, and role of the prison industrial complex in their debut novel
This interview has been edited for clarity, length, and flow.
MH: Why it is so important for people of any and all backgrounds to be informed about the particular barriers, obstacles, or nuances that Black disabled people face here in the U.S.?
SS: I think all of us are impacted by these systems in various ways, whether we're positively or negatively impacted by them. Disability is a category that we can all enter into at any time, right? And that's particularly true if you are a person of color who deals with environmental racism and medical racism and state violence, right? You're more likely to be disabled.
Often when people are newly disabled, they're struggling because they don't know disabled people and they don't have a disabled community. It's much easier when you already have a sense of how disabled people can exist in the world.
They're saying 20% of people who have COVID-19 end up with long COVID. The last data that I saw showed that Black people are much more likely to have long COVID. I would guess that some of that is about access to early care and treatment. You're more likely to have access to treatment if you have money and if you have quality health care, which we know white folks are more likely to have, so because of that we just have such an increase in the population of disabled people in Black disabled people in general. I think this is an increasingly important issue for folks to be aware of the various barriers that folks may face.
MH: You’re a professor. How might this manifest in the college classroom or campus?
SS: From educational settings, we've gone back to fewer and fewer online classes. I think people have gone back to more and more strict attendance policies, which really encourage people to come to school sick. Which used to spread everything, then we can bring that into workplaces, you know, where again folks are trying to push to move back to less work from home or no work from home.
MH: Can you give us an example of how this might impact someone’s everyday routine?
SS: We know that working from home for a lot of disabled people has been really beneficial. Even to have that as a part-time option, you know? Some days a week in order to deal with taking care of medical appointments. And also, just the decrease in the strain on your body of having to put on all of the work clothes.
I work on a university campus. How far do you have to walk from your car to wherever your building is? What if you don't have parking right at your building? You don't have control over things like temperature or the seating that you have access to necessarily.
As we continue to see how the pandemic as a mass disabling event impacts our populations in these large ways, we're gonna see more and more people who are experiencing disability and needing to adapt their lives to a different way of being. We can be prepared for that and create more access to create more flexibility.
MH: What changes would you hope to see from our elected officials now? What’s one policy change you wish you could see now?
SS: [laughs] Just one? I think going back to a lot of our early pandemic policies, right? So that's masking in public spaces, limiting the number of people in public spaces, and having access to COVID-19 unemployment leave, so that when they're not forced to go back to work as quickly.
One thing that, I think, has not happened in any kind of formal way that I would like to see is the creation of better policies around long COVID. We're really struggling with folks being able to get a diagnosis; a lot of people are being told it's “just depression” or that it’s a “side issue,” rather than something that's actually happening to their minds.
MH: Can you share more about why long COVID specifically is so important right now in terms of disability rights and access? What do folks need to understand about long COVID?
SS: I'd love to see more institutionalized support for folks with long COVID. Some sort of effort to really educate folks about what long COVID is and understanding that long COVID is a disability.
I think a lot of people who are dealing with it right now are often dealing with it in isolation. They're trying to get back to a nondisabled body that doesn't exist. All the data that we have on COVID shows that there are permanent changes to your body, including your brain. It is worse for every infection.
I think the more that we can move towards a public health effort to help people understand what long COVID is, and that it is a disability, folks can understand themselves as disabled people who deserve certain kinds of rights and accommodations.
MH: What are a few examples of ableism that able-bodied people might not recognize as ableism?
SS: I'm thinking about this in the context of being in the classroom, but I think it can work in other contexts, too. We make an assumption about the way that someone shows they're paying attention. They’re looking up there, sitting still, they're looking you in the eye ... Maybe they're taking notes, right? But for a lot of folks, that's not the way they pay attention. They might actually need to be moving or looking somewhere else or doodling and they're actually paying attention and listening quite well.
Some college classrooms don't even allow laptops, they only allow handwriting. They’re creating conditions in which we've decided this is the only or the best, most desirable, way for folks to pay attention, making an assumption that we all pay attention in the exact same way and that our brains work the exact same way.
I think another form of ableism that some people think they're doing the right thing is that people will see someone pull into an accessible parking spot, you know, they've got a license plate or sticker or whatever they need, and the person gets out of the car and they walk away, and whoever is watching, they think: That person doesn't look disabled to me.
So therefore they're going to intervene, right? So they're gonna be like either directly confront somebody or leave a note on their car, or like call the police about this car, right? But they think that they are doing some good by reporting someone that does not seem disabled to them using a disabled parking spot.
MH: What lesson do you think abled folks as a whole can draw from the parking space example?
SS: I think that folks should remember that disability looks a lot of different ways. Someone can be very young and healthy-looking and be in an extraordinary amount of pain. You just don't know.
I think with the increase in long COVID, we're seeing more and more of this. People who look “fine” and yet ... I think that's another problem with ableism, people making the assumption: I can see disability, or I can detect disability with my eyes.
MH: What are some examples of allyship that should become standard?
SS: I think in a similar way of not making assumptions about who is and is not disabled based on what I see with my eyes, not making assumptions about what people might need in a space.
I think about going into a meeting and not even asking: Does anyone want me to turn on the autocaptions? Instead, we can automatically be doing that, right? But we really assume that everyone is not disabled until stated otherwise.
If we went out of our way at the beginning of gatherings that we have, whether those are personal gatherings or work gatherings, professional or public ones, if we make an effort to say: What are the things that you might need to be in the space for as long as you need to be here, in a way that is comfortable and good for you, we would find out so many more people in our lives make their own secret adaptations.
Like I bring my own chair sometimes. if I don't think there's gonna be a chair that's comfortable for me. All the things that we just learned to do on our own to make the world more accessible to us because of the assumption that everyone is not disabled.
MH: What did I miss? What do readers absolutely need to know?
SS: This is an academic book from an academic press. It's based on scholarship. And it really is written in this phase of accessibility, it's written in a way that is hopefully readable to a lot of people and hopefully interesting to a lot of people.
Whether or not you're Black or disabled, or in these fields in any way, whether or not you're interested in this history that I cover in this book. I really target activists and organizers and cultural workers in two sections that specifically say: Here are these lessons we can grab from the history. Now, how can we apply that to our current work, to our contemporary work, to be better about Black disability politics and the way we organize?
That was an intentional part of making the book accessible … trying to write it in a way that wasn't only legible to like, 20 people with PhDs. It really was trying to be a book that a lot of different people can read and benefit from in different ways.
Remember, you can check out the book here, order it here, and request it at your local library as well!