Being Body Conscious

Bodies of different shapes and sizes.

Photo illustration by Mark Riechers. Original images by Alexander Krivitskiy, BillieSinitta Leunen, and Eduardo Cano Photo Co. (CC0)

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Original Air Date: 
September 30, 2023

When you look at your body in the mirror, do you love what you see? Do you pick out the things you don’t like? Maybe you’ve heard of body positivity. But what if we just felt neutral about our bodies? In this episode, we talk about our bodies — how we move through the world in these fleshy vessels, how it feels to exist in our bodies in a world that asks so much from them. How do we live full and embodied lives?


Jessi Kneeland, a fitness trainer turned body neutrality coach, suggests that aiming for a neutral stance toward one's body — rather than unconditional love — might be more realistic and attainable for many of us.


Rae Johnson is a somatic movement therapist and the author of “Embodied Activism.” They say the process of making change is more sustainable when you listen to your body. 

Bradley Lomax and Judith Heumann

Sami Schalk is the author of “Black Disability Politics,” a history of disability rights and Black activism. She says understanding Black disability politics is essential to building an accessible future.


Show Details 📻
September 30, 2023
May 18, 2024
Full Transcript 📄

- [Anne] It's "To the Best of our Knowledge." I'm Anne Strainchamps. In case you forgot, you live in a body. You were born into the world in this vessel made of skin and hair, and then somewhere along the way, you became conscious of it. Maybe even self-conscious.

- [Angelo] Everyone has their own sort of body image journey. Can you walk me through your journey?

- [Jessi] Yeah. So I would say that I started objectifying myself very young.

- [Speaker] Stay beautiful.

- Blemishes?

- Natural beauty.

- Clear that.

- [Speaker] That morning fresh makeup.

- [Anne] This is Jessi Kneeland, author of "Body Neutral."

- [Jessi] Other people were objectifying me as soon as I hit puberty. And so I started to learn that my value was very much based on my appearance. The most interesting and important thing about me was looking hot.

- [Speaker] That's hot.

- [Jessi] And so I cared a lot about how I looked, and I went through a lot of labor to meet conventional beauty ideals. And I cared very much when I didn't.

- [Speaker] Burn more fat.

- [Jessi] That was just normal. That was just what I thought. Girls and women are supposed to think this way or whatever. Later, I worked in the fitness industry in New York City as a personal trainer. I was training like Victoria's Secret models and actresses and some of the most conventionally beautiful people in the world. And they were all having the same kind of struggles and thoughts and feelings and everything that everybody else did. So I realized, well clearly, the key to happiness or whatever it is that we've been taught, looking a certain way is gonna offer you, it doesn't work. At the time, body positivity had just become very popular, but I didn't love all of the talk around, "You should just love how you look."

- [Speaker] Stay beautiful.

- [Jessi] Just felt really unrealistic for a lot of people. It completely erased people in marginalized bodies. It was very much for like thin white women or fat white women with an hourglass body, or conventionally attractive with like one little flaw. There was a lot of that messaging that just didn't sit right. So eventually, I discovered the term body neutrality and oh yeah, this is the work I'm doing with clients. This is the work that I was doing for myself.

- [Speaker] What do you hope for?

- [Anne] Maybe you've heard about the body positivity movement and the importance of learning to love your body, but you know, there might be something even better to strive for instead. Like body neutrality. Producer Angelo Bautista wanted to know more.

- [Angelo] To start off, what is body neutrality?

- [Jessi] So body neutrality, as I define it, is the process or ability to strip away all of the added meaning and significance and moral judgment and all of the interpretation and everything from your body or your appearance so you can just see it for what it is, which is morally neutral. You can have a reaction to it, you can have a preference, you can have a feeling about it, but it doesn't have power over you the way that people who are struggling with body image issues often feel like their body or appearance has a lot of power over them.

- [Angelo] I love chill goals. I think we need more chill, achievable goals.

- [Jessi] I agree.

- [Angelo] You know, with all the distress and anxiety around body image, we hear a lot about body positivity, loving your body. Everybody's beautiful, everybody's perfect the way it is. Your body's a temple. These don't sound like bad messages, but are they negatives to body positivity?

- [Jessi] Absolutely. So the body positivity movement started as a sociopolitical movement. It was intended, it's rooted in the fat activism of the '60s. It was always intended to fight for the rights and dignity of people in marginalized bodies, and in particular people in fat bodies. And that would be things like changing policy and anti-fat discrimination and protecting people in marginalized bodies. I'm all for that. That fight is still happening. You know, there is still social justice issues at play, but it kinda went mainstream, especially in the social media space like, over a decade ago. And at that time, the message switched pretty dramatically from, We need to protect people in marginalized bodies, to, "Everybody should overcome whatever issues they have and love themselves unconditionally." And there isn't anything innately wrong with that idea, except for the fact that A, it totally took a sociopolitical message and made it a personal problem. You know, it's like the pull yourself up by your bootstraps idea around body image. Like, I should just not care if people are discriminating against me. But it also just, it doesn't feel realistic for most people. And so in that way, it often just breeds more shame and feelings of failure. So, you know, it's like another unrealistic standard for a lot of people. And I just can't really support anything that's gonna make you feel worse about yourself, even if it was intended to make you feel better about yourself. So if you can love your body unconditionally and just feel amazing about it all the time, that's awesome. I have nothing against that, but most people can't. And so I think setting that as like the gold standard just makes a lot of people feel like they're failing on a whole new front. Not only do they not look the way they want, but they also don't accept themselves enough or love themselves enough.

- [Angelo] And that distress can come in many forms of not always like, "Oh, whoa is me about my body." But maybe it's just a little feeling or a thought.

- Yeah.

- Yeah. You write that all body image issues are built upon these moral and social hierarchies that we have about our bodies. Can you give an example of how these hierarchies play out?

- [Jessi] Oh, yeah. So like the most classic one would be conventional beauty and body ideals. They're very distinct and binary. Very much around masculinity and femininity. I mean, we could just talk about that like as one hierarchy, but honestly, that's a million if you really break it down. So what happens a lot of times is people don't just suffer over one hierarchy, right? They're not like, "Oh, I just don't fit the ideal." They're like, "I don't fit the ideal in these 25 ways. My hair isn't the right way. My shoulders are the wrong shape. My belly is too big." We go through and there's all these little hierarchies built into each one, and that's what causes the suffering. I've had a woman who couldn't get pregnant or couldn't stay pregnant, and so her body image wasn't, she didn't like think, "Oh, my uterus is ugly," right? But she just hated her body because there was this feeling that it was being bad, that it was broken or wrong. And so she ended up hating how her body looked, because that was what's accessible in the mirror, you can't see your uterus. So she ended up with all of these body image issues that really came down to a hierarchy, which is like, "I'm not woman enough."

- [Angelo] There's a chapter in your book where you explore the one big lie that every single person with body image issues, which is everyone. The big lie that everyone believes, What is the big lie?

- [Jessi] So the big lie is that your body is your problem. That your source of suffering is your body or your appearance. And you literally cannot have body image issues if at least some part of you does not believe that lie. Because it's kind of like this red herring or ruse. The purpose of trying to look a certain way is to let's say, meet an emotional need. Let's say you are lonely and want more deeper connections. And so you're like, okay, if only I could look a certain way, I would get that need for connection met. It doesn't work if you don't believe that the reason you don't have connection is because you don't look good enough. So part of the job of body neutrality is to start poking holes in that by encouraging you to go get those needs met in the body you have now. And all of a sudden, the ruse starts to crumble and you're like, "Oh, I see." Because again, it's not very useful to be like, "But that's impossible. You can't get that. Stop wanting that." But what is effective is learning how to dismantle that belief system by taking action and seeing it be disproven.

- [Angelo] Hmm. You know, when you say it out loud, when you spell out the big lie for people, it almost seems a little obvious. Like, duh, this is the problem. But why is it that people believe in the lie? Or how is the lie made invisible?

- [Jessi] Ugh, so there are so many reasons. Part of it is just the culture that we live in is basically upheld by the scaffolding of various systems of oppression that are all, their whole goal is to keep you from noticing this lie, right? Like if we go back in the history of our country, we've got slavery and it was extremely important that we say somebodies are better than others, so that we could uphold a system to economically advantage white people and exploit Black people. So there was a lie right there that your body is the reason this is happening, that it is your body's fault that you are in this position essentially, or that there was some meaning associated with the different bodies. And that's true in every way when it comes to sex and gender, or gender expression, age, weight, race. Like, there are so many ways that we are told certain things about a person's body or appearance makes them more or less worthy of specific kinds of lives or treatment or whatever. So it would implode society basically for everyone to see this lie. Which is why I consider body neutrality work to be social justice liberation work. Because if everyone actually started unpacking these and going, "Huh, if it's not my body, then what is it?" They will immediately see the hierarchies for what they are, and the systems of oppression.

- [Angelo] But instead, I think what we're presented with is the option of, "Well, what's easier? Thinking the problem is my body and fixing it myself, or trying to dismantle this big foundational lie on which a lot of societies built upon?"

- [Jessi] Absolutely. And that's one of the reasons that it's so effective too. We don't like to feel helpless. So there is a very valid reason to blame yourself and your body for bad things that happen to you, because it almost gives you hope. "Well, if only I could change my body, then bad things wouldn't happen to me anymore." It doesn't work. So listen, if someone cheated on Beyonce, I think we can like safely assume that nobody's, you know, like nobody gets through this life without problems, right? Like, if you imagine that your partner would never cheat on you, if only you looked a certain way, that is not a guarantee. So there's a lot of stuff that we kind of take on, and it almost feels like empowerment, even though it totally tortures us. "Well, if I make this my problem and it's something I can change, then all I have to do is change it." If you're like, "Oh, it's society's problem, and I'm just gonna have to face discrimination for this thing and live in fear of bad things happening," that's a lot bigger of a task and it overwhelms people and it makes them feel really outta control. So yeah, that's a huge reason that we hold onto this story too.

- [Angelo] Is there a particular story that you have with a client that kind of helps to illustrate what the body neutrality journey looks like?

- [Jessi] Yeah, God, so many. I will tell a bit of an amalgam, because I think this story is so, so common. And I've had many clients go through something very similar. So a client who is really, really negative associations with their body. They look in the mirror and they feel disappointed, or they feel panicky, or they're dieting all the time and tracking and trying to control their weight. What we do together is to get to understand what the point, the like, underlying, usually subconscious purpose of being a certain weight is. And there's some obvious stuff, like the more superficial level of it is, "Because I wanna fit society's ideals and I don't want anybody to judge me." But there's always, if you go digging down deep enough, there's always something else. There's some other association, unmet emotional need, some problem that you're hoping will be magically solved if you're at a certain weight. It's always a bad plan, I will say that. So with somebody in the weight example, a lot of times, what would happen is we would identify what they're actually looking for, which might be a feeling of belonging, and the ability to be their authentic selves and have that witnessed and appreciated and all that. And then we start, go getting that at the weight they're at, so that eventually, their weight just doesn't matter. It's a non-issue because they're getting their needs met, that the weight loss was sort of vaguely, subconsciously supposed to be getting met. And with that shift, once you actually solve the underlying problem, or meet the underlying need or whatever it might be, again, it's not like you look in the mirror and go, "I love this body now." You just kinda go, "Oh, like this isn't how I would necessarily prefer to be." But then you move on and it doesn't torment you all day. It doesn't take up so much mental space. It doesn't impact your mood or your sense of worth. So that would be a really common journey to the body neutrality kind of work that I do.

- [Angelo] I wanna go back to talking about gender. There's been a lot of focus on transgender people in mainstream news and in legislatures across the country, legislating which bodies are allowed in which bathrooms or what people are allowed to do with their bodies. What can body neutrality bring to the conversation?

- [Jessi] Well, I guess I'll put it this way, I believe, and when I wrote the book, I intended for the way that I talk about body neutrality to apply to everyone. First of all, everyone has complete bodily autonomy and agency, and no one else should be commenting on or judging what they do with their own bodies or appearance. There's just no need for that, which also means that there's no no body neutral actions. So sometimes a person will say, "Is it okay if I get Botox? Or am I being like, not body neutral?" And I'm like, "Nope. It is absolutely possible to do literally any decision from a place of body neutrality if you are doing it without the added meaning and significance that says, 'I will be more worthy of such and such on the other side.'"

- [Angelo] I can see this playing out in someone's mind, someone listening to this that may have some sort of thoughts about trans people and thinking that trans people have the wrong body, and therefore, they should just accept their body as it is. Which sounds like body positivity or neutrality. But again, when you dig deeper, that is based on a moral hierarchy of thinking that cis bodies are worth more than trans bodies and trans bodies should not exist.

- [Jessi] Yeah, we already do all kinds of gender-affirming procedures and different things like that. I mean, a boob job is a gender-affirming procedure. If a woman gets it, she wants to usually something in the space of feel more feminine or feel more womanly or whatever. So the fact that anyone could ever possibly freaking care that someone who doesn't identify that way gets it, or it's gender affirming something that doesn't make sense to them, total nonsense to me. But also it's about alignment with your inner self, right? If you think about it that way, like if somebody is moving towards a gender identity expression that aligns with their inner self, they're gonna thrive and it's gonna be awesome. We should be supporting and encouraging that. And anyone who feels like the thing that I am deep down is unwelcome is going to suffer mental health issues, they're going to just, it's gonna be a really, really hard time. So gender is no different than that. We're polka dots, get a boob job, whatever you want. But like most people are going to really be able to step into the most healthy, happy, and expansive version of themselves when they are allowed to tell their truth.

- [Angelo] So you identify as queer and non-binary. I was just curious as to how body neutrality figures into these identities for you.

- [Jessi] Whew. So I don't think that I would know I was and non-binary if it weren't for body neutrality, that's what I'll say. Because I, like most people raised as a girl and presumed to be a woman, we didn't have the language back then. I mean, the language of non-binary is very new. So when I was growing up, I just felt like something was wrong with me, sort of vaguely, you know? Like I just wasn't the right way. I felt like I didn't belong in the categories that people kept putting me in, and I didn't have any language to identify it. But I will also say that for most of my younger life, I was so committed to the woman ideal, that I probably never would've given myself permission to even consider the language and concepts that exist now because it would have cost me privilege. And so because of that, I didn't really let myself think too much about anything. The thought of giving up that privilege was terrifying. And it wasn't until I went through the body neutrality process and had been going through it for years and years when it was like, I basically learned that giving up that privilege really suited me, made me a better person, made me like a lot freer, made me more compassionate. Like everything you can imagine, that's where I was able to start considering the new concepts and language around gender and sexuality. And I was like, "Okay, I can see how these apply to me and I'm gonna claim them. And if somebody doesn't like that, I am now at peace with the fact that I have worth, no matter what people think." So it doesn't feel as scary. And now I'm like so comfy. Granted, I still have an enormous amount of body privilege, but just having gone through the process of no longer wearing makeup, I shaved my head, I gained weight and stopped eating and exercising in a way that I learned in the fitness industry was ideal. All this stuff that I did, I was constantly unpacking my relationship to privilege and self-worth and all that stuff through the body neutrality process. So thank God. I mean, I get to be and non-binary, and those are like my favorite things about myself. So it is just the best.

- [Angelo] Well, thank you so much, Jessi.

- [Jessi] Thank you. This was great. This was fun.

- [Anne] Jessi Kneeland, former fitness trainer turned body neutrality coach. Their new book is called "Body Neutral: A Revolutionary Guide to Overcoming Body Image Issues." And that was producer Angelo Bautista talking with them. I'm Anne Strainchamps, and this is "To The Best of our Knowledge," from Wisconsin Public Radio and PRX. It was Gandhi who famously said, "Be the change you wish to see in the world." It may sound simple, but changing hearts and minds is hard work. As anyone who's ever stood on a picket line or campaigned door-to-door, or tried to mobilize on behalf of anything can attest. Rae Johnson is a somatic movement therapist and author of "Embodied Activism." Some years ago, they got concerned about the high levels of burnout among social and political activists. There were people everywhere trying to make the world a better place, but getting discouraged and depressed. Rae says, "The process of making change is more sustainable when you listen to your body."

- [Rae] I was at a conference a number of years ago now, and I'd given a talk, and after the talk, there was a reception. And I was immediately waved over by two people who I recognized were sort of senior folks in the field. Two men, both quite tall. I walk over to them, they say, "Hello, we listened to your talk." And they immediately begin peppering me with questions. Kinda challenging questions, but I understood where they were coming from. They were good questions. They weren't trying, I don't think, consciously to intimidate me. But what was happening on a body level, because they were so much taller than I was, they started to sort of lean in toward me and tower over me and I felt intimidated. I'm not suggesting that talking to people at a conference is a traumatic event, but that our bodies respond to threat in some fairly typical ways. And I could feel these impulses happening in me. And I thought, "I don't wanna flee. I don't wanna collapse. I don't wanna just sort of stop answering questions and start nodding and agreeing with them and appeasing them." So I let my body do what it had the impulse to do. And what I did was I leaned in and I looked up at them, and I beamed. I showed them with every fiber of my being that I was delighted to be in this interaction with them. But I leaned into their space. And what happened over the next moment or two was they looked a little startled, and then they backed up. Huh, and the tone of the conversation shifted. The question stopped coming so quickly, they slowed down. Somebody cracked a joke, and the whole tenor shifted profoundly.

- [Anne] Is this what you call somatic bandwidth?

- [Rae] Yes, it is. It's cultivating our sensuality. I don't mean that with any sexual overtones at all. I mean, just tapping into all of the ways our bodies are wired to align with and attune to pleasure.

- [Anne] So this new book you've written about "Embodied Activism," I think that often we think of activism as starting with changing people's minds. It's about ideas and words. And you're suggesting that we have it backwards, and we should start by thinking about the body. So why?

- [Rae] Hmm. Well, part of the reason I wrote this book is that I'm living in the same moment in time as you are and as we all are, particularly in the West, but I would say that this is now global. The increasing polarization of political discourse, intolerance, I think, has really come to the forefront in a way that is creating in lots of people who are actually good-hearted, well-meaning conscientious folks This sense of, you know, of despair, of feeling as though there's nothing that they can do that's going to make a difference. That activism and social change work has been stereotyped as this thing that only certain people do. And you have to be organized, and you have to be a radical. And everyday folks don't have a place in that, or don't feel as though they have a place in it. And so we need to reframe what we think of when we think about activism and social change work in a way that actually pays more attention to the little everyday interactions that we have with other people.

- [Anne] It's working, I was gonna say from the bottom up, but it's really from the inside out.

- [Rae] It's both. It's both from the inside out and from the bottom up. Other people have said it more eloquently than I have, and I'm going to paraphrase. Augusto Boal who was someone who developed a modality called Theatre of the Oppressed. And he said this marvelous thing about how social dynamics and power structures are embedded in our everyday. They're all visible and embedded in our smallest, everyday interactions with one another. And that that happens between me and my dentist, not just between me and the government.

- [Anne] You know, it's funny, when I think of activism, I think of bodies in the streets.

- [Rae] Yes.

- [Anne] Marches, vigils, rallies going door to door. You know, movement, real movement builds movements for change. But I think that what you mean when you talk about embodied activism is something much subtler. So let's take another example. Here's a very, very everyday example. Anywhere in the political spectrum, there's plenty to be outraged about on a daily basis. You scan the news headlines, you see something some politician has done or said, somebody you disagree with violently. You can feel your whole body tense up. You feel angry. What do I do with that?

- [Rae] Yeah, that's such a good question. How we respond to our rage has a lot to do with our own histories. I think maybe when I say it, it'll be obvious, but I don't know that we necessarily pay much attention to the fact that anger is not inherently violent. Anger and violence travel together but anger is a feeling, violence is an action. So when I'm socialized both in my own family setting or cultural settings, but also through the media, socialized to associate the experience of anger in my body with violent action, anger can get really scary. Many folks who espouse anti-violence can start to be anti-anger. When in fact, I think anger's an incredibly important emotion to have, because it tells us something about the situation that we're in. Learning how to use our anger rather than be overtaken by it means that in that moment where I'm reading the headline and I'm going, , I take a pause. And I go, "Okay, what feels right for me in this moment to do with this feeling that I'm having?" I might go for a walk and burn it off. I know lots of people who dance, like put on really loud, you know, kind of headbanging music and just stomp it out.

- [Anne] It's like banishing demons.

- [Rae] Exactly. It releases that charge so that we're not walking around with it in our bodies all day sitting on it.

- [Anne] It seems to me that the real challenge of what you're saying, and also maybe the fun of it, is learning to cultivate an equal amount of awareness for what's pleasurable. And isn't it interesting that we don't do that?

- [Rae] I mean, to tap into how we're feeling in our bodies, how we feel in movement, like walking down the street, just the sensation of moving, the sensory capacities that we have of sight and hearing and sound and smell and taste. We use them all the time, but I don't know that we enjoy them.

- [Anne] Well, we're a puritanical culture. So I guess everything else is about work or striving or toil, or, you know-

- Yes, yes.

- Something difficult.

- [Rae] This is a philosophical, political, social legacy that has really consistently vilified the body across so many arenas.

- [Anne] So in your book, you introduce a concept I hadn't heard before, that I'm fascinated by. Embodied microaggressions. So we all know what microaggressions are. But an embodied microaggression, what do you mean?

- [Rae] Well, upwards of 75% of the meaning of all of our communication with one another actually happens on the nonverbal level. Much of the work that had been done around microaggressions focused on what people said to one another that felt like a slight or an insult or a slur. And what I'm arguing is that we also need to pay attention to things like eye contact or lack of eye contact, or the shrug of a shoulder or a slight turning away, moving back, or moving forward. When we experience an embodied microaggression, we sometimes feel awful about ourselves and we don't know why. And many folks have gotten very good at conveying a whole lot of implicit bias, a whole lot of negative implicit bias, but keeping their words very politically correct.

- [Anne] So as a white cisgender woman, there are probably many ways I express unconscious bias and privilege physically and somatically. What could I be more aware of?

- [Rae] Leaning in. Really looking at someone, really like looking at them as if you're checking in with them, as if you really care how they're doing. Muting, and I'm using these examples particularly as microinterventions from the perspective of someone who's holding a lot of privilege in the room. Softening my gestures, making more space. It's just endless numbers of possible things we could do that help to shift what's going on non-verbally so that I'm not taking up as much space and doing a better job non-verbally of sharing the power.

- [Anne] Okay, last question 'cause it's the last thing that I wanna make sure we share with people. You also have a somatic first aid kit.

- [Rae] Yes.

- [Anne] So this is like, you're already triggered or whatever. You're not having a good experience. What's somatic first aid? What should you have in your kit?

- [Rae] Somatic First Aid is really about having some strategies to help soothe, center, ground and settle your body. Taking a breath and follow the exhale, not just the inhale, but really follow the exhale of the breath. When we exhale and we sigh out, we just go, . Our minds think, oh, if I'm sighing, I must be in a safe situation. And so it starts to believe it. It's like, oh, okay. The theme of all of these tools, the thing that they all have in common is that they're all things that your body would do if it were okay.

- [Anne] Again, look for pleasure.

- [Rae] Yeah. It's really about tapping into what's happening in your body, and then pausing and looking for a different way, another route, another avenue toward Pleasure.

- [Anne] That was Rae Johnson, the author of "Embodied Activism: Engaging the Body to Cultivate Liberation, Justice, and Authentic Connection." Coming up, disability, politics, and the power of claiming and really owning the word for yourself. What does it mean to call yourself disabled?

- [Sami] There's this desire to protect ourselves from the oppression that we might experience, and that's really what I think was happening for me. I was already Black and queer, and a woman, and I was like, "Man, adding another thing. It just seems like a lot of things." But what I found through being in disability community through the disability studies, it really made me realize that I was learning so much about how to navigate the world in ways that was so much better for my body and my mind. I learned so much through being in disability community that it allowed me to start to think about, "Okay, what if I claim this word for myself? And what would that mean?"

- I'm Anne Strainchamps. It's "To the Best of our Knowledge" from Wisconsin Public Radio and PRX. Our bodies contain multitudes. Sitting here at the intersection of so many different identities, some of which have been historically overlooked. Sami Schalk is an associate professor in the Department of Gender and Women's Studies at the University of Wisconsin Madison, and she's the author of "Black Disability Politics: A History of Disability Rights and Black Activism." She says, "Understanding Black disability politics is essential to building an accessible future for everybody." Here's producer Shannon Henry Kleber.

- [Shannon] I wanted to first ask, Sami, how do you define Black disability politics?

- [Sami] So first, disability politics is the approach to disability as a political and social issue, rather than a simply a personal or a medical issue, which is often the way that it's thought about. That it's something that's in your body, in your mind, between you and your doctor, between you and your family. But disability politics says, "No, this is something that is shaped by our understandings of culture and society and politics." So then Black disability politics is specifically the way that Black communities, Black activists and Black organizers have approached disability as a political issue.

- [Shannon] Is one of the reasons that's so important is to not feel like we're alone in whatever's going on with us individually?

- [Sami] I think not feeling alone, but also learning from the different ways that folks have done this work. I think that the work of the Black Panther Party that I talk about in the National Black Women's Health Project, I think that work is really important and useful for us in disability justice movements right now. So if we're only looking at our history as being that work that was done by the mainstream, predominantly white disability rights movement, we might not be able to pick up on certain approaches and understandings of disability that are gonna be really useful to us now. I think especially as in the wake of the pandemic, more and more people are disabled, more folks of color are disabled, right? So we're in this moment of, I've been calling in my kind of conversation since the book came out that the pandemic is a mass disabling event. And so we have all these newly disabled people, and I think that the approaches from Black disability politics and the work of other disabled people of color, disabled queer and trans folks is gonna be really useful as we bring folks into community and into movement work.

- [Shannon] What's the connection between Black civil rights and disability rights? You bring this up in your book that they're connected.

- [Sami] Yeah. Well, I think they're connected in large part because the systems of oppression are connected. I believe that ableism functions to support racism. It functions in the place of racism that racism operates depending upon ideas of ableism. The idea behind ableism is that disabled people, people with body minds that are different from the norm, should be treated differently, cured, should be medicalized, put away like, institutionalized. And that then becomes justification for also treating Black folks differently. Because Blackness historically has been designated inside of these categories of mental and physical difference, right? So the belief that Black folks were mentally inferior to white people as a justification for slavery. Moving outside of race the way that homosexuality was in the DSM as a psychological disability until the 1970s. So these other systems rely on ableism to function. And so my argument is that if we're gonna try to dismantle white supremacy, we also have to dismantle ableism. We have to incorporate disability into our analysis and into our approach because these systems work together, they function together and support one another.

- [Shannon] So I think our listeners know a little bit about what ableism is, but I'd like you to explain it more. What is ableism and can you give some examples of how someone might experience it?

- [Sami] Yeah. The basic form of a definition of ableism is discrimination against disabled people and preference for able-bodiedness. But the way this manifests in our society isn't necessarily just about directly people with disabilities, it's also about a perception of what is an appropriate norm, an appropriate way to be in the world. So we see, for example, the ways that we determine what is the amount of time, I'm thinking here about my students on campus. What's the appropriate amount of time between classes that someone needs to transition to move from here to here? That's the creation of an able-bodied norm that says, "15 minutes is all you need to get from here to here, and if you can't do that, then you're disabled." So we're constantly setting these norms and these expectations. Again, in the wake of the pandemic, I think a lot of us realize how much better we can work from home. When we're able to be in spaces that make our bodies comfortable, we have access to the food we need, we can really have more control of our environment. And so some of us that move, that push to go back to work makes us realize how much that environment can be disabling to us can be very difficult for us. So ableism is the belief that all of us should meet this norm, and that if we don't meet this norm, there's something wrong with us. And those norms are physical norms, mental norms, ideas of the ability to reproduce, to work, excellence, intelligence, all of these things or norms that we have created within our culture about body minds.

- [Shannon] Yeah. You start your book with a 1977 description of the Black Panthers. Can you describe this picture that was on the cover of the newspaper, and what is the story behind that?

- [Sami] Yeah, so in April of 1977, there was a protest of the health education and welfare department, HEW, H-E-W, by disabled people in order to try to get Section 504 of the 1970 Rehabilitation Act passed. So there was this section that had been written into law, and the law had technically passed, but they had not written regulations on what that meant. The section essentially said, you cannot discriminate against disabled people in anything that receives federal funding, right? So that's some of our public schools, hospitals, things like that. But because the government had not yet defined what constitutes discrimination or who counts as a disabled person, there was nothing that you could do to kind of implement the law at that point. And so disabled people had organized to have these protests. And the longest lasting protest happened in San Francisco in the Bay Area, where there has been a long history of disability organizing in that space. That also happens to be where the Black Panthers in Oakland were based. And they had a panther who had been doing this kind of cross-bridging work, Brad Lomax. Brad Lomax was a Black Panther who had multiple sclerosis. So after he became a Black Panther, he became increasingly disabled, started using a wheelchair. And so he was invested in ensuring that the Black Panthers spaces, so their community center and their schools, their clinics, were accessible for disabled people. And to do that work, he started partnering with other disabled people and activists in the Bay Area. So he became that bridge link as a disabled Black panther. And that's often how these kind of connections happen. As someone who operates inside of both communities starts to make those connections. So they brought food every single day to this protest. There's no way that people could have occupied this building for as long as they did without that regular support of food coming in from the Panthers.

- [Shannon] What was the result of the protest? What happened?

- [Sami] Section 504 was passed, yeah. So it became our first.

- So it worked.

- Yes, it absolutely worked. They stayed for, again, over 20 days inside the building, sleeping and staying in. They sent some delegates to DC to talk to representatives, and eventually, yes, the section 504 was passed, and it became our first really expansive anti-discrimination act for folks with disabilities that eventually, the Americans with Disabilities Act, which we now know as kind of the main protection act for folks with disabilities, it was passed in 1990. It really builds on the work of Section 504.

- [Shannon] I'm thinking a lot about, as I'm reading your book language and how language has changed throughout history of how we try to do no harm in describing what's going on with people's lives and how we just describe each other and ourselves. How as a scholar and as a researcher and a person experiencing this, how has language changed and what are some of the terms and the language you think people should be using today?

- [Sami] So one, disability is the chosen term within the community at this time. I think there are a lot of folks who are resistant to that term who wanna look at the etymology and the definition to be like, well, it means not able and wanna resist that by using these other kind of what we call faux nice terms sometimes of handy capable, or especially abled, special, all these terms that try to make it seem nice, but don't actually really do anything functionally in the world other than obscure connections to one another, disabled people. Sometimes, it takes folks a while to get to the term "disability," and there are lots of historical reasons for that and individual reasons for that but I think collectively using this term can be really important to find community and to connect to one another.

- [Shannon] Can you talk about why someone might not want to describe themselves as being disabled? And I think you talk about that personally a little bit. Can you tell your own story?

- [Sami] Yeah. So I think for a lot of us, disability is so strongly associated with official medical diagnoses and labels with accommodations in the workplace or in school or with receiving state support. And so we feel like, "Well, if we don't rise to that threshold that the state has determined equals disabled, that we can't use that language." But also, there's so much stigma associated with disability, which is why the Disability Justice and Disability Rights Movement exists, is to really resist that stigma and say that having a disability is just another way of moving through the world that isn't necessarily good or bad. It just is. And sometimes, it may include things that are difficult, and other times, it may include different ways of moving through the world that make things easier or better. And if we have a non apparent disability, something that isn't necessarily visible on our bodies or in the way that we behave all the time, there's this desire to protect ourselves from the oppression that we might experience. And that's really what I think was happening for me. I was already Black and queer and a woman, and I was like, "Man, adding another thing, it just seems like a lot of things." But what I found through being in disability community through the disability studies, it really made me realize that I was learning so much about how to navigate the world in ways that was so much better for my body and my mind. I learned so much through being in disability community that it allowed me to start to think about, "Okay, what if I claim this word for myself? And what would that mean? How do we use this language? Do we insist that people use this language?" This has been a part of disability rights for a long time, really insisting people use the word "disability" and claim the word "disability." And the Black disabled activists that I talked to were so thoughtful about saying, "Yeah, this is a thing that we would like people to do." Not because we wanna check off more boxes and be able to claim there's this many disabled people in the country, but because disability identity is a tool to come into community. And when you come into community, you're able to start to realize, "Oh, these things I'm experiencing are not just me. I'm not just alone." And it has led to me finding and connecting with so many other people who have similar disabilities as mine, and being able to, yeah, learn so much more about how to navigate the world. From as simple as, you know, someone telling me, "Did you know that there are cordless heating pads?" And I was like, "I did not know there are cordless heating pads. I need to get that." So now I can have a cordless heating pad and move around sometimes in order to still go about my day while having back pain like I do.

- [Shannon] I also wanted to talk about joy. So you are a pleasure activist. What does that mean? What is a pleasure activist?

- [Sami] Yeah, the concept of pleasure activism for me comes from the work of Adrienne Maree Brown She has a book called "Pleasure Activism," so I encourage folks to check that out. I have a interview essay inside of that book. At the core is the belief that pleasure is political. And pleasure is political because who gets access to pleasure? Whose pleasure is encouraged versus policed, criminalized, shamed, right? Those things are shaped by our political norms. It's shaped by our cultural norms. And so there are some of us that our pleasures are considered good and positive, and others who, it's not. Those of us who are most free in this culture have the most access to pleasure, to leisure. So pleasure here is not just sexual pleasure, it's much broader. It's this concept of being able to have satisfying experiences, deeply satisfying experiences. So pleasure activism then takes this idea that pleasure is political and says, how do we incorporate that into our movement work? How do we encourage people to embrace pleasure, to experience pleasure, to make space for other people's pleasure? And that is actually how we make liberation work long-term sustainable. A lot of the pleasure activist work, I think is coming out of organizers, seeing other organizers burn out, become exhausted, and have to stop doing movement work altogether because they were unable to make space for joy and for self-care inside of the work.

- [Shannon] So what are some of your pleasure experiences these days? I know that there's a Janelle Monae experience. Can you tell me about that?

- [Sami] Yeah. So I, on Sunday, was able to get on stage and twerk with Janelle Monae which was a magical, magical experience. And with Janelle Monae's new album, The Age of Pleasure, for me, it's 100% a pleasure activist album. And I booked a ticket to the Indianapolis show because it was one of the shows that had seating and went with my partner and tagged Janelle Monae and Wondaland many, many times to see if they would allow me to come on stage. And yeah, they sure did. So I got to go on and I held Janelle Monae's hand.

- [Shannon] Oh wow.

- [Sami] They said my name. We danced, we hugged. It was pure magic. Pure magic, pure joy, pure pleasure.

- [Shannon] It's wonderful, wow. It's so great to talk with you.

- [Sami] Thank you.

- [Anne] Sami Schalk is the author of "Black Disability Politics," which is now an open access book that's free to download. There's a link on our website at, and that was Shannon Henry Kleber talking with her. "To the Best of our Knowledge," is produced in Madison, Wisconsin at Wisconsin Public Radio by Angelo Bautista, Shannon Henry Kleber, Charles Monroe-Kane, and Mark Rickers. Our technical director and sound designer is Joe Hartke with help from Sarah Hopeful. Additional music this week by Holizna and Rare Sounds. Steve Paulson is our executive producer. And I'm Anne Strainchamps. Thanks for being with us.

- [Announcer] PRX.

Last modified: 
May 18, 2024