Embodiment for the Rest of Us – Season 4, Episode 4: Imani Barbarin
Thursday, May 9, 2024
Chavonne (she/her), Jenn (she/they), and Maya (she/her) interviewed Imani (she/her/hers) about her embodiment journey.
Imani Barbarin is a disability rights and inclusion activist and speaker who uses her voice and social media platforms to create conversations engaging the disability community. Born with cerebral palsy, Imani often writes and uses her platform to speak from the perspective of a disabled Black woman. In the last few years she has created over a dozen trending hashtags that allow disabled folk the opportunity to have their perspectives heard while forcing the world to take notice. #PatientsAreNotFaking, #ThingsDisabledPeopleKnow, #AbledsAreWeird and others each provide a window into disabled life while forming community. Imani is from the Philadelphia area and holds a Masters in Global Communications from the American University of Paris, her published works include those in Forbes, Rewire, Healthline, BitchMedia and more. She runs the blog CrutchesAndSpice.com and a podcast of the same name.
Content Warning: discussion of genocide, discussion of ableism privilege, discussion of diet culture, discussion of fatphobia, discussion of medicalized racism, discussion of racism, discussion of fatphobia in the career space, discussion of mental health, discussion of chronic medical issues, mentions of ableism, mentions of suicide, discussion of ageism
Trigger Warnings:
58:30: Imani discusses weight loss surgery and eating disorders
The captions for this episode can be found at https://embodimentfortherestofus.com/season-4/season-4-episode-4-imani-barbarin/#captions
A few highlights:
4:47: Imani shares her understanding of embodiment and her own embodiment journey
19:40: Imani discusses how the pandemic has affected her embodiment practices
47:22: Imani shares her understanding of “the rest of us” and how she is a part of that, as well as her privileges
59:33: Imani discusses her work with social media misinformation/disinformation and disability advocacy
1:14:11: Imanin shares how her embodiment around phobias and -isms
1:16:51: Imani discusses how listeners can make a difference based on this conversation
1:24:24: Imani shares where to be found and what’s next for her
Links from this episode:
American with Disabilities Act of 1990 (ADA)
Music: “Bees and Bumblebees (Abeilles et Bourdons), Op. 562” by Eugène Dédé through the Creative Commons License
Please follow us on social media:
Twitter: @embodimentus
Instagram: @embodimentfortherestofus
CAPTIONS
Season 4 Episode 4 is 1 hour, 28 minutes and 48 seconds (1:28:48) long.
Jenn: Welcome to our 4th season of the Embodiment for the Rest of Us podcast, a series exploring topics and intersections that exist in fat, queer, and disability liberation (and beyond!!)! You can consider this an anti-oppressive and generative space full of repair and intention.
Chavonne: In this podcast, we interview those with lived experience and professionals alike to learn how they are affecting radical change and how we can all make this world a safer and more welcoming place for all humans who are historically and currently marginalized and should be centered, listened to, and supported.
Jenn: Captions and content warnings are provided in the show notes for each episode, including specific time stamps, so that you can skip triggering content any time that feels supportive to you! This podcast is a representation of our co-host and guest experiences and may not be reflective of yours. These conversations are not medical advice, and are not a substitute for mental health or nutrition support.
Chavonne: In addition, the conversations held here are not exhaustive in their scope or levels of inquiry. These topics, these perspectives are not complete and are always in process. These are just highlights! Just like posts on social media, individual articles, or any other podcast – this is just a snapshot of the full picture.
Jenn: We are always interested in any feedback on this process, especially if you feel something needs to be addressed. We invite you to email us at Listener@EmbodimentForTheRestOfUs.com with any comments, requests, or concerns.
[1:44]
(C): Welcome! Hi there friends. It’s May! Hello from Season 4 Episode 4 of the Embodiment for the Rest of Us podcast. In today’s episode, we have our conversation with Imani Barbarin (she/her/hers) about her embodiment journey.
(J): Imani Barbarin is a disability rights and inclusion activist and speaker who uses her voice and social media platforms to create conversations engaging the disability community. Born with cerebral palsy, Imani often writes and uses her platform to speak from the perspective of a disabled Black woman.
(C): In the last few years she has created over a dozen trending hashtags that allow disabled folk the opportunity to have their perspectives heard while forcing the world to take notice. #PatientsAreNotFaking, #ThingsDisabledPeopleKnow, #AbledsAreWeird and others each provide a window into disabled life while forming community.
(J): Imani is from the Philadelphia area and holds a Masters in Global Communications from the American University of Paris, her published works include those in Forbes, Rewire, Healthline, BitchMedia and more. She runs the blog CrutchesAndSpice.com and a podcast of the same name.
Wherever and however you are listening to this today, you are in for an insightful and meaningful conversation. We are so delighted to have you join us!
[3:05]
Chavonne (she/her):
Before we begin, we wanted to introduce Jenn’s dietetic intern, Maya Nelly, she/her, who will be joining us for two episodes. Welcome, Maya. How are you today?
Mayaneli (she/her):
Welcome. Yay. I’m so excited to be here. I’ve been a follower and kind of been around in the background, hearing about the podcast happenings. I’m so excited to be here. Thanks for having me.
Jenn (she/they):
Aw, thank you so much.
Chavonne (she/her):
We’re so excited you’re here. It’s so nice to meet you today.
Jenn (she/they):
Yay. My worlds are coming together. Really fun.
Chavonne (she/her):
We are filled with immense excitement to have a dream guest, Imani Barbarin, she/her/hers, here, who is joining us from outside Philadelphia, Pennsylvania.
Welcome. We are delighted and are so pumped to be in the same space together, chatting about embodiment as we know it, in this tumultuous and gaslighting world. How are you doing at and in this moment, Imani?
Imani (she/her):
I’m doing okay. I’m doing fairly well. I’m just annoyed with our government, as per usual. The things we decide to focus on, versus what we do not focus on, is very telling. It’s just getting my nerves on edge. But other than that, I’m pretty good, and thank you all for having me.
Chavonne (she/her):
Weird. Sorry.
Jenn (she/they):
Yeah, I was like, oh, so many thoughts. My nerves are on edge, too. Every latest thing feels like it’s just already been enough already. And… So excited to have you. As I told you ahead of time, you’re a dream guest to have on here, so I am…
Chavonne (she/her):
100%.
Jenn (she/they):
I can’t wait. Okay. I can barely contain myself, but I will try. My jaw is getting tense, because I was smiling so much. Okay.
Chavonne (she/her):
I know.
[4:47]
Jenn (she/they):
It’s so fun. So thank you again for being here. Can’t wait. So as we start this conversation about being present to and in our bodies, I’d love to start with asking our usual centering question, meaning centering about the themes of the podcast, and how they occurred to you. Can you share with us what embodiment means to you, and what your embodiment journey has been like, if you’d like to share that?
Imani (she/her):
Sure. So embodiment means to me, just existing in my presence. I’ve had a really rough time of what embodiment means, since I was about, I want to say before I was one years old. I’ve been in physical therapy and experimental therapies and just everything, people grasping and pulling and tugging on my body the entire time. So I would go about my days just disassociating during those moments or doing what I had to do and then just really just crashing at my own room and trying to be away from everybody. And so I really try now to be as present as possible. But it is still a struggle because for years I’ve kind of learned that to be most present, I had to be completely alone, I had to be away from people because otherwise the facade comes on, and I am myself but I’m not myself, I am somebody that is performing myself for other people. And then trying to go into private spaces to actually feel things. And even in therapy, I’ve tried to talk to therapists and be like, I don’t feel anything. I feel things in echoes and moments afterwards. And so it’s really hard for me to understand my own embodiment, but I have been working on it for years, very slowly.
Chavonne (she/her):
“Performing myself for other people” hit so, so heavily. Yeah.
Jenn (she/they):
Yeah. The mask of just trying to be however it is you feel like you have to be around other people.
Imani (she/her):
Yeah. And a lot of it has to do with survival. When I was younger, all those vestiges of the days of yore, so to speak, when it comes to disability, are very present in the way that people interact with you today. So I still, to this day, have people coming up to me, like, “What’s wrong with you?” And I’m just in a store or, I remember I was in a gym and somebody comes up to me and goes, “If I were you, I would kill myself, but you are just so brave for being out.”
Jenn (she/they):
What the fuck?
Chavonne (she/her):
Oh my God.
Imani (she/her):
Yeah. Even just a couple weeks ago, I want to say I was at the store and this woman was right next to me, she goes, “If I were you, I’d never leave the house, but look at you doing it.” I’m like… So I-
Chavonne (she/her):
[inaudible].
Imani (she/her):
Yeah, I just find so much peace being alone, for good reason.
Jenn (she/they):
Oh my gosh. So it’s like you don’t have a choice about being perceived, when you’re not alone.
Imani (she/her):
Yeah, exactly. Yeah. I’m very… You put on a smile and you grin and you you’re like, “Oh my God, thank you so much,” and then you go about your day, because otherwise it’s an argument that is just going to waste your time.
Jenn (she/they):
Yeah. And your energy.
Imani (she/her):
Yeah.
Chavonne (she/her):
That’s a big part of embodiment, is deciding, is it even worth it to engage with this awful person? So I’m sorry that’s happened, more than more time, to you. That’s awful. That’s really awful.
Jenn (she/they):
My hands keep coming up in fits. I’m like, what if I was next to you? And also that could be hard too, if someone’s next to you and they also have their own feelings about it and try to come to your defense, when you may not get a choice about that. Like, if I was to take over, for example, with these fists. I have a lot of compassion for that, and also know how I would be in that situation, wanting to defend you. And you can defend yourself, you can make your own choices. It’s just a feeling of, why is this happening out here in the world?
Chavonne (she/her):
Correct.
Imani (she/her):
And that’s also a really tough thing too, because there’s so many people that either are new to my life or friends that I’ve made recently, that are like, why don’t you say something? I’m like, because this is every day. This is not something new to me. This is new to you. You just happen to be here. So yeah, it’s always very rough. And also too, I’m a black woman with a disability. I don’t get the luxury of popping off and hitting somebody with a crutch. Because the treatment for me in that scenario is much different than anybody else.
Jenn (she/they):
Yeah. I feel a lot of-
Mayaneli (she/her):
Oh, I’m sorry.
Jenn (she/they):
No, go ahead.
Mayaneli (she/her):
I keep thinking in this conversation, I don’t know if y’all are familiar with “What We Do In The Shadows,” but I keep thinking of energy vampires. There’s always just energy vampires in our life that are just sucking all of the horrible things out. And it’s just like, I don’t know, it’s like, how do you find those boundaries and what do you say? And I feel like in the moment, it’s hard.
Jenn (she/they):
Yeah.
Chavonne (she/her):
Yeah, it is.
Jenn (she/they):
Yes. Yeah. And talking about how much of your life that, just trying to be embodied on your own, it’s like you don’t have access to building instincts about that, unless you’re alone. Does that feel isolating for you? Does it feel like solitude for you? It may be it cycles between multiple feelings.
Imani (she/her):
Yeah, I think it’s very hard because I can be a very social person and I like being social, but I also know what comes with that. So I usually try to be social with people that I already know. I’m not really all that comfortable in places where people don’t already know me. And it’s very interesting being on social media, where people do have that parasocial relationship with me, so they kind of don’t really cross those boundaries, but it’s more like regular degular people that do that type of stuff. But yeah, it’s been very isolating, and it’s really interesting that people have this idea of you that’s not necessarily true. Even family members are like, “You’re such a social person. You love being around people. You’re not an introvert.” And then I go to my room, I’m like, oh, this is where I could take a deep breath, because I’m not on, right now. And it’s very interesting because people think that I’m this version of myself that isn’t real, but I can’t tell whether they’re responding to a version of me that I put on for them, or if they’re responding to actually knowing me, or if this is their only version of me that they do know.
I’m my most comfortable self alone, which, I feel bad because there’s so many people in my life that really do want to get to know me, and I really do try. But it’s always been very hard.
Jenn (she/they):
And the experience you were describing, since you were one years old, one-year-old, however we say that, that dissociating is the norm. So it’s difficult to be embodied in general. And I was just feeling the grief, the loss, the mourning, of having to try to move into a different space with your body, with yourself, how effortful that can end up being, which is another loss in itself, that it has to be so effortful, just thinking about that, and we’ve talked a lot on this podcast, and it’s been a lot of… I love this conversation, because this comes up a lot, of, dissociation is wise. And being disembodied is just as much in our embodiment sort of empowerment as embodiment itself, because it’s survival, it’s protective, as you’ve been talking about. And also we might want more.
Imani (she/her):
Yeah. And also too, there’s certain scenarios where if you are somebody that needs aid, you need help with things… For instance, I travel a lot for work. I’m a public speaker. I talk in different places all the time, and I disassociate the most when I’m at the airport, because [inaudible] the airport staff, they don’t even talk to you at a certain point. They just talk around you. Like you’re just another piece of luggage that’s moving through the airport. And there are certain times where I have to repeat myself multiple times just to remind them that I’m talking to you. And I try to be… I’m very cordial, I tip well, that’s always really important to me. But there are people that, they will talk to the other staff about you, and you’re right there. You’re like, that’s not where I’m going.
And multiple times… I was just at the airport a couple weeks ago and I had to correct a guy, I said to this guy… It was a very large airport. It was Houston airport, it’s massive. And my gate had changed, and I kept telling him, “This is not the right gate. If we go back…” He was like, “No, no, no, you’re wrong. You’re wrong.” Would not listen to me. He’s like, “You don’t know what you’re talking about.” He wound up… We took three trains because he finally realized he was going in the wrong direction, after I corrected him multiple times. And this is annoying too, because I’m also diabetic, so I only have a certain amount of time between flights so I could get food and take my medication. So now I’m out my medication and my blood sugar is plummeting, I’m having trouble thinking. It was a whole mess. And after a while, after those types of things, I’m like, I’m going to tune out. I’m just going to tune out and just not pay attention, because he clearly knows where he’s going. Those types of things.
Jenn (she/they):
So you have to be disembodied, disassociated, because your autonomy is being threatened and you’re just trying to have your agency, your voice, in that moment.
Imani (she/her):
Yeah.
Jenn (she/they):
What a loss. No wonder you dissociate there all the time.
Imani (she/her):
Oh, yeah. Yeah.
Jenn (she/they):
I don’t know what other choice. Yeah, I don’t know what other choice there is to deal with that kind of situation, other than getting angry, which tends to be my default, because I’m embracing angriness, because I used to pretend I didn’t have any. So I get angry all the time now, but that’s my usual go-to, though, is dissociation in those moments.
Imani (she/her):
Yeah, and I’m better at advocating for other people than myself. So what I’ll-
Chavonne (she/her):
Always.
Imani (she/her):
Yeah, I’m better… But I can turn it on when I need to. But after a while, there are certain instances where I’m just like, you have to talk to me. You can’t keep talking over me or ignoring me. I had one woman at TSA yell at me because I couldn’t stand in the scanner, and I was… Because listen, I do this all the time, I literally say to people, please do a pat-down. I can’t get up without my crutches. You will have my crutches because you are scanning them. It’s usually fairly quick, very easy. This woman said, “You can’t stand up? You can’t stand? You can’t stand for three seconds in the scanner?” I’m like…
Jenn (she/they):
No.
Imani (she/her):
“No. Look… You have my crutches. You want me to use this wooden cane?” I don’t like canes for various reasons. I’ll use it for a couple seconds, but… So I got up, I got into the scanner and I started falling forward, because I was having really bad balance that day, and she was… Just so pissed that I did exactly what I told her was going to happen. So it’s things like that where I’m like, you know what? I’m just not going to talk to people. And it’s actually better in a lot of cases that, as a disabled person, people think I can’t talk, because otherwise they’re just going to keep trying to berate me, thinking that… And if they think I can’t understand, it’ll be a little bit easier.
Jenn (she/they):
Oh, Imani, I don’t know why this phrase is coming to my head, but it’s like everyday eugenics. It’s like the average person and how they uphold their own comfort and the system of how you have to go through this security facade at the airport. It’s such a facade anyway, but just like, this is how we do things here, and you’re like, well, I’m not able to do that. And they’re like, well, this is how we do things here. They can’t get out of that. It’s so dehumanizing, is really what I’m hearing. If we’re dehumanized, how can we do something else besides dissociation? Or we have to push ourselves almost really hard past that to get to a different advocacy place. I said the word “effortful” earlier, and I’m just really noticing how much brain work this takes. Like, what am I going to do in this situation?
How visible do I want to be? What kind of advocacy do I want to do? Do I just… As you mentioned, people have coded you as someone who can’t speak, so you’re like, maybe I just won’t do that. Right? Maybe I’ll just sit in that space, because that’s the easiest thing for me to do, right now, because you deserve ease, versus constant fights, constant effort. It’s just, how would you not do anything except just not have any energy left, not even for your whole day, maybe only during a part of your day?
Imani (she/her):
Yeah, and usually these events happen just in a portion of a day. My mom was somebody that was always really dead set of me always advocating for myself and always using my voice in that way. So these calculations are not things that I’m not used to. These are things that I’ve been taught since I was a little baby, basically. So, luckily, that always kicks in if it needs to. But you’re right, it’s exhausting.
Jenn (she/they):
Oh my gosh, I’m so sorry. It’s so exhausting. As a white woman, I always feel very responsible for this because white women are such a problem, very specifically in this way, particularly when it’s come to disability justice and how they treat their own children, et cetera. I’m so sorry that happens. I wish we had an Easy button or something to get people to see.
Imani (she/her):
Yeah. And a lot of people don’t know until it is them. There are people that I talk to that have been injured or disabled later in their life, and they’ll say things like, “I had no idea. They don’t even treat me like I’m a person anymore.” “I don’t even bother to travel A, B or C way because I don’t want to have to deal with this.” There are people that want the job that has travel associated with it. They want the opportunities, but they’re like, “I don’t want to deal with every step along the way, either.” And that’s really disheartening too, because on the one hand, you want people to have those opportunities and to do whatever they want with their lives and their bodies. On the other hand, you know full well that it’s just not happening, in a lot of ways.
[19:40]
Chavonne (she/her):
Yeah. Yeah. It’s really heavy. I’m sorry. Yeah. I want to just speak even more about embodiment, in terms of the pandemic, which is not over, as everyone is saying, but as human beings, how has the ongoing pandemic/endemic affected your embodiment practices in ways that challenge your process, especially all of its inherent ableism, virtue signaling, and “back to normal” energy of the current moment?
Imani (she/her):
I get so stressed out when I think about the pandemic. It’s something that’s been ongoing for the last four, almost five years. Four, five…
Chavonne (she/her):
Oh my gosh. Yeah.
Imani (she/her):
What’s interesting too is that… So when the pandemic started, I was actually working in professional disability advocacy, and I was the communication director for a disability protection advocacy agency. So what they do is they basically enforce the ADA, they’re the state level organization that kind of enforces. Every state has one. If you’re ever looking for one, your state will have one, including native reservations and territories. But I was working with this organization and right as the pandemic was started, our offices were getting the medical rationing guidelines sent to us through the state. I think the Department of Health and Human Services were administering them. And so they wanted disability agencies to look through them to see if there were any pitfalls in regards to discrimination, in terms of disability discrimination. And these agencies had to basically redline a lot of the Department of Health and Human Services regulations because a lot of them were basically boiled down to, if you’re non-disabled, good luck.
We’re going to do our best to prioritize non-disabled people who have a better quality of life or better ability to survive, and we’re going to ration those services to them. They’re going to get them first. I think in the state of New York, there was one provision where… Yeah, I think it was New York, they said that if you are a disabled person who uses a ventilator in their everyday life and you go to a hospital, then the hospital can reserve the right to take your ventilator from you and give it to a non-disabled person who’s more capable of surviving, if you got covid. And then-
Chavonne (she/her):
[inaudible].
Imani (she/her):
Yeah. On top of that, you have guidelines that said that if the hospital was at capacity with this infectious disease, people who have aides or advocates or people, particularly people who have intellectual and developmental disabilities, you can’t bring those aides and advocates with you to the hospital.
Jenn (she/they):
I hadn’t thought of that. Because I don’t have to, right? Oh my gosh.
Imani (she/her):
Yeah. Because they were like, “Oh, we’re at capacity. We can’t continue the spread, if you [inaudible] aide,” all those different things. And there were other provisions. People who were blind to low vision lost their aides to help them do things like grocery shop or get their meds. People particularly who were deaf blind, had the hardest time. Because they basically have aides that follow them very closely, and their communication is through touch, because they do tactile ASL. So they had trouble getting groceries, they had trouble getting their meds, they had trouble getting services.
And then on top of this, I’m a disabled person, so all these things also apply to me and many of my family members. So it was a very stressful time, particularly at the beginning of the pandemic. And then for people to kind of act like it’s over, that we didn’t actually go through what we actually went through, it’s probably been the most gaslighting thing I’ve ever experienced in my life. Because I still mask, I try to encourage my family to mask, and you see these very smart and intelligent people who are otherwise engaged in their health, just letting it fall. And I find it really interesting too, as a fat person, all these things about, if you’re fat, then you don’t really care about your health. If you don’t mask, you don’t care about your health. The performance of health has also fallen by the wayside, because of the pandemic.
But all that to say, it was a very rough time. And then you had the George Floyd 2020 protests, and what is disability organizations doing about it? And disability organizations were kind of like, ah, well, huh. Particularly ones that were part of the federal government, they really didn’t know what to do. So all of that to say it’s been really, really difficult. And I think, I go back to that just disassociating or staying by myself or just staying in my room and just not bothering. Of course, I have to go to places and make sure that I’m getting my healthcare and getting my regular doctor’s appointments and things like that. And then you see the doctor, come into the doctor’s office, like, “Oh, you want me to mask?” I’m like, “You’re a doctor.” And people are acting as though it’s over, and it’s still killing disabled people. But people live under the assumption that death follows disabled people, and that’s not true. And we’re seeing that translate to Palestine and children with disabilities in Palestine who are being starved to death, and hospitals that are being bombed, this idea that death follows us, but no, people who want us dead, follow us. That’s kind of the problem.
Jenn (she/they):
Ooh. [inaudible] creepy chills.
Imani (she/her):
And so even the guy who had the iron lung, who just died-
Jenn (she/they):
He just died. I saw that.
Imani (she/her):
Yeah. This man was in the iron lung, I want to say for 40 years. 40, maybe 50.
Jenn (she/they):
Yeah. Since he was eight years old, I think that I read.
Chavonne (she/her):
Wow.
Imani (she/her):
Since he was eight years old. It’s been several decades. And it was covid that killed him. And there’s no saying, “Oh, well, if you’re disabled and you’re so scared, stay home.” But he was home. He could not go anywhere. So that’s what I mean when I say that it’s not that disabled people are followed by death, that we’re followed by people that want us dead. And then people excuse it on the illness or the disability or the pre pre-existing condition, not realizing that they have a hand to play in the harm that follows us.
Jenn (she/they):
Wow. And earlier you were talking about isolation, and even now the pandemic is… I’m just hearing the magnitude of isolation, and people you were talking about, especially people who are deaf blind, who need this touch sensation to follow what’s happening. If they don’t have their aides, then it doesn’t seem like they can go anywhere. If someone is extremely immunocompromised or just immunocompromised and unwilling to risk themselves, which is extremely understandable and necessary, they can’t leave their house. Just sitting in the fact that there’s a lot of conversations happening in the world of like, which version of this are we going to do? And you’re really talking about, well, sometimes isolation is the only choice, or at least that’s something I think I’m getting. I’m not trying to put words in your mouth.
Imani (she/her):
No. Sometimes isolation is the only choice, but disabled people live in a very complicated state, where we need community to survive. So, also during the pandemic, that doesn’t often get talked about, is the fact that so many of our caregivers died from Covid, because statistically speaking, the majority of caregivers are women and specifically women of color, who [inaudible] the exact same system of medical racism and anti-blackness and medical sexism, that their experiences are not being taken seriously, so then they’re becoming disabled and being put on the chopping block as well.
Currently, we are dealing with a massive caregiving shortage that is leading to disabled people dying. And at the same time, we’re building up systems of institutionalization, which is going to wreck people’s sense of embodiment, because the only way to survive those types of places are to disassociate, or either that are to let madness befall you, because we have these systems that are quite devastating, but it’s this very complicated place because disabled people want to be part of society. It’s everybody else that is convinced that we are not to be a part of society, and we’re basically just trying to get people to catch up. And it’s also hard, in terms of embodiment, to get people to understand disability and what it’s like, despite the fact that they’re just as liable as anybody else to become disabled. They can never put themselves in that position or to understand the position when they are incredibly fragile. Your bodies are fragile, your minds are fragile, they will break, but people don’t ever consider that, either.
Jenn (she/they):
That’s something I think that I’ve heard you talk about. It’s not a matter of if you’ll ever be disabled. It’s a matter of when, when in our lives will that be our new circumstance.
Imani (she/her):
Yeah. And you constantly have to beg people to take their own health seriously. So what makes you think they’re going to take the health of disabled people seriously? We have a situation where 75% of the aging population wants to age in their homes, yet they won’t put a bar in their bathroom, because it ruins the aesthetic. Right? That’s the type of stuff we’re talking about, when we’re talking about institutionalization, mass incarceration. It could be as simple as not putting a bar in bathroom or a seat in your bathroom or making sure that your home is accessible. Because sometimes if you go to a hospital and you injure yourself severely enough, you don’t go home. You don’t go home until you could prove that your home is accessible or that you’re making accommodations. And if you’re somebody who is single and you don’t have somebody looking out for, making sure your home is accessible, and working with a social worker and things like that, you’re not going home.
Jenn (she/they):
Wow.
Chavonne (she/her):
Oh, wow.
Jenn (she/they):
I’ve never heard that before.
Chavonne (she/her):
Obviously it’s… Sorry. Obviously it’s true. I just had never thought of it, ever, that way. So, thank you for that. And it’s funny because as you said… Even as I just said that, what kept coming in my head is the additional labor that people from marginalized communities, especially the disabled community, have to do on top of just existing. It’s exhausting. It’s just exhausting. The emotional labor, the educational labor, all the things, the mental labor of educating people all the time, and it’s just exhausting. I can’t even imagine. It’s just exhausting. Because even as a black, fat woman who’s seemingly able-bodied, I have to do a lot of education, and it’s just a lot. It’s just a lot. That’s what’s coming to mind for me.
Imani (she/her):
Yeah. Yeah, it is.
Jenn (she/they):
Yeah. I’m just letting it sit for a second, because these are things that when they’re new to me like this, I always have this sort of pause of, I wish I’d known this sooner. The fact that you might not be able to come home from the hospital because they won’t let you. That never occurred to me. And I’ve spent a lot of time working in hospitals, on the other side, and that… It feels like something I should have known, just in terms of power dynamics, that I could be asked to invoke. I didn’t know that.
Imani (she/her):
And that’s why I try to tell medical professionals that what happens in that exam room is not going to stay there. I’m sorry, it’s just not. I think medical professionals have this idea that this is their 9:00-to-5:00 job. They go home, that’s it. But for the people that they’re diagnosing, that they’re writing notes about, even just small notes into somebody’s medical file can completely derail their entire life. I think a lot about how Tennessee put a provision in their anti-trans legislation, that people need to be evaluated for autism in order to get gender-affirming care, and when-
Chavonne (she/her):
Sorry.
Imani (she/her):
Yeah, and when think about-
Chavonne (she/her):
Oh my God. Okay.
Imani (she/her):
Yeah, and then you think about things like guardianships and conservatorships, where once you’re diagnosed, you’re more likely to, or it’s a lot easier for people to file those types of cases against you and take away all of your autonomy. And so when I try to frame disability for people, this is the one thing that unifies every other thing. It is the thing. And people just are kind of like, “Well, we need to focus on A, B, or C first.” I’m like, “No, if you don’t focus on this first, everything else, it will be like Swiss cheese. Things will fall through it like a sieve.”
Jenn (she/they):
So, you mentioned that Tennessee bill, so someone being diagnosed with autism, as a way to keep them from their autonomy is, I think how I was hearing that, right? You may not have access to gender affirming surgery if it turns out that they assess you and they decide that you have autism.
Imani (she/her):
Well, if you are diagnosed with autism, you are more likely to… Parents and family members can file cases of guardianship or conservatorship over you. That doesn’t mean necessarily that they can make medical decisions for you, but they can make it extremely difficult for you to make those types of decisions for yourself. There are several states that have been trying for years to put autistic people on lists for police, so that police will know who is autistic when they pull them over, and things like that. There have been… The surveillance state for disabled people is extremely pervasive, and so once you introduce disability into their lives, there’s a lot of things that become more difficult. You can’t move out of the country if you have an autism diagnosis. Even if you’re fat, you can’t move to places like New Zealand. They have weight-
Jenn (she/they):
Or autism there, either.
Imani (she/her):
Right. Autism there, either. So you literally cannot leave the country for extended periods of time, or move anywhere else. So there’s a ton of things that can kind of derail what your goals are for your life. Now, this isn’t to say that people shouldn’t seek diagnosis if it’s going to give them answers and a pathway to treatment. That’s not what I’m saying. But understand how disability is weaponized against multiple different communities. Even going as far back as slavery and drapetomania or runaway slave syndrome or hysteria, or queerness is a mental thing… Those types of things have always been rooted in ableism as a way to facilitate every other bigotry that they’re geared towards.
Jenn (she/they):
Yeah. I’m trying to remember how you phrased it, Imani, it was on one of your tweets, which I actually have printed over here, where you talked about how ableism is the root of all anti-oppressive directions, that we can link, just like you were saying, linking everything back to that, that it is the reason for oppression, whether that’s actually what they’re going for or not, it’s the in.
Imani (she/her):
Yeah, it definitely is the in. There’s always this idea, even protest psychosis, and-
Jenn (she/they):
That’s a thing? Protest psychosis?
Imani (she/her):
Yeah. So around the ’60s and ’70s, they were locking up dozens and dozens of black men and grassroots organizers, saying that they had schizophrenia, and then they were performing experimental psychosurgery on them, so they were playing around in their brains. When I tell people how deep it goes, they’re like, “No, that couldn’t have happened. I would’ve known.” I’m just like, “But it happened to disabled people.” Because-
Chavonne (she/her):
Which is why you don’t know.
Imani (she/her):
Right. Because once you declare somebody disabled, you declare them as somebody that’s not in charge of their own body or mind, and therefore, not only are they not in charge of those things, you don’t trust them about their own story, either. You don’t trust them to narrate their own experiences. And so that’s why it just flies under the radar. Once you do that to somebody, it’s really difficult to go back.
Jenn (she/they):
Wow. Oh, that one made my stomach go in some knots, there. I totally believe that happened. There’s something about our present moment and awareness through social media and other things on the internet, where we can realize that something has been happening… Like things in Palestine, which you talked about earlier, that it’s definitely new to me, paying attention all the time. And it’s been happening for longer than even my parents have been alive. It’s longer, longer, longer. It kind of feels like there’s going to be endless things that we learn in this way, that have always been happening, that have already been happening. I find it very humbling and also enraging.
Imani (she/her):
Yeah. And even with Palestine, I think for every one person that has been killed, there have been at least three that have been permanently disabled. Where we talk about the UN conventions on the freedom of movement, the right to return, now that they’re disabled, there’s no assurances that those things can happen. Even if those provisions were adhered to by the occupiers, there’s no promises that they’ll be able to navigate a society that has been decimated, that their infrastructure is gone. There’s no ramps, there’s no elevators, there’s very little healthcare services.
Jenn (she/they):
Yeah. 80% of the buildings, as of today, I just heard this yesterday, are gone. Uninhabitable, unusable.
Imani (she/her):
Exactly. And so that’s where disability plays a role in Palestine. And not only that, but every single person that has experienced it is going to be traumatized for the rest of their lives. [inaudible] the mental health aspects to it, too. So when I say that disability is… I mean it. I really do mean it. The Congo and the silent genocide there. I think DRC has some of the highest rates of amputations in the world, because of the way it is weaponized against the resistance in people that are there. So it really is just… It kind of boils down to that, for me. Now, it’s not to say that anything else is unimportant or should not be focused on, but I just feel like so much of it boils down to disability access, that it can’t go ignored.
Mayaneli (she/her):
The way I’m kind of forming this in my mind is, I see this kind of ableist structure as the puppeteer, and then there’s this, folks with disability, and they don’t always have control, but it’s like trying to convince the puppeteer, I want to go this way, or I need to go this way, but they’re not listening to you, right? [inaudible].
Imani (she/her):
Yeah. It’s like that. I think, too, I think other people become the puppeteer, too. And I think that’s the hardest part as well, is that everybody’s liable to buy into ableism because they think they’re never going to be disabled. Thus, the way to set yourself apart is to perform ableism in a way that people can’t mistake you for disabled, in any way. And we’re seeing this with the return of the R word for disabled people, and as a way to discount… Every election cycle-
Chavonne (she/her):
I didn’t know that was returning. Oh, God.
Jenn (she/they):
It’s the internet, and it is.
Imani (she/her):
It’s pervasive. It’s bad. I just think, too-
Chavonne (she/her):
That’s why I don’t look at things… Oh my God, I’m so upset. I’m sorry. Go ahead.
Jenn (she/they):
I’ve noticed it on Twitter a lot, recently, like, what? When did we start doing this? Sometime in the last, I don’t know, three to six months, it’s gotten really bad.
Chavonne (she/her):
Disgusting.
Imani (she/her):
It’s gotten really bad. And I think too, people always think of ableism as a precise weapon, and it’s not. Every election cycle… It’s so funny too, because every election cycle, it’s… This is the perfect example. Democrats will say, “Oh no, they’re senile. They’re out of their mind. They don’t know what they’re doing.” And then they’re like, “Oh, well, I could see the same thing about Democrats,” and then disabled people are like, “So, wait a minute…” And so they see this as a way to discount one another’s achievements or chances of being in public office, but the reality is, it’s always going to hit back on the people that are most left-leaning. One of the diagnostic criteria for autism is a strong sense of justice. It’s always going to ricochet back on the people that are left-leaning, the people that are people of color, who have the highest rates of disability already, who believe these far-fetched ideas about what society should look like. It’s always going to hit them most. So I’ve never understood this idea that throwing ableism back and forth is productive or even effective, when it’s not [inaudible].
Jenn (she/they):
I didn’t know that was one of the criteria.
Chavonne (she/her):
Yeah. Same.
Jenn (she/they):
Wow. Anything that can quell something that’s against whatever the standards, norm, direction, of those in power, anything that feels like it might be in the way, let’s make it a DSM five criteria. That feels so obvious to me right now, and I’ve read that criteria, and that one never stuck out to me, but wow, that’s just sitting in a different place, to me, now.
Chavonne (she/her):
Is there anything about the pandemic that has felt like it’s connected you further with your embodiment? What lights you up about your work, and when are you feeling most embodied?
Imani (she/her):
I rest more. I’m not somebody that likes resting very much. I get annoyed. I’m like, why am I sleepy? I just… The other day, I slept for a full 24 hours, and I don’t know-
Jenn (she/they):
Oh, that sounds amazing.
Imani (she/her):
I woke up. I remember just waking up and looking up and like… What time is it? And then immediately going back to sleep. I don’t know what happened. It wasn’t like an illness tired. It was just like a sleepiness. I also have a sleep disorder, which is, I have sleep apnea, so even when I do sleep, I’m not actually asleep, and if I sleep in a situation where I’m not sleeping deeply, I’m not asleep at all. So for two days, I’ve been in a hotel and I was awake the whole time, and then as soon as I got home, I was like, I want my bed, I don’t care.
So I do rest more, I do nap more, which is a very big achievement because I came from a household where my dad, every Saturday, if we slept for too long, he’s like, “Get up, don’t you have stuff to do? Don’t you have homework to do?” I’m like, “No. No.”
Chavonne (she/her):
“No, I do not.”
Imani (she/her):
Later on, they realized that I was really… I had a sleep illness. So [inaudible] butt off, at that point. But yeah, I think I rest more. I do feel more in tune with my emotions, but it is still hard to actually embody them and feel them. I usually try to reflect on them instead, before I’ve even had a chance to experience them. But I am getting a little bit better at trying to embody them. But it’s been an upward battle for years, so I didn’t expect it to happen overnight.
Chavonne (she/her):
Yeah, definitely. All of that makes so much sense. Yeah, yeah. Especially growing up in a black family, where we don’t… I think most families of color, I was going to say people of color families, that’s not exactly it. Sorry. But families of color, there’s such a hustle culture as part of families of color, and so of course they’re like, “What are you doing? You’re not tired. Just keep going, keep going, keep going.” Yeah.
Imani (she/her):
No, I remember. So I took the SATs twice when I was 11 years old.
Chavonne (she/her):
What?
Imani (she/her):
Yeah.
Mayaneli (she/her):
[inaudible].
Imani (she/her):
This is a big… So I was in gifted, so they give you the opportunity in gifted to take the SATs and all this stuff. I was like, why do you want me to take this? So my dad had me take it, and literally when he picked me up from… He picked me up from the test, it was noon or something, he kept talking to me, I was just like, stop talking. I was like, I can’t focus. I can’t think. Just shh. And so my dad has always been like, “You need to hustle.” Even when I was reading books for pleasure, he was like, “Are you learning new words?” I’m like, “No, it’s Mary Higgins Clark. I’m learning what it’s like to be a single woman in her 20s [inaudible].” I would read books [inaudible].
Chavonne (she/her):
Awesome.
Imani (she/her):
But yeah, my dad was always a big hustler. He would take us to Sam’s Club. Do you know how Sam’s Club has the table of the toys next to the books? And he would [inaudible] watch us and he would walk to see if he went to the toys or the books, and if we went to the toys, he would come up to me, like, “There are children around the world who take every opportunity to learn something new.” I’m like, “I would like to know what Barbie is doing, this year.”
Chavonne (she/her):
Oh my goodness. I love that. I love that.
Imani (she/her):
[inaudible] very big hustler. Yeah.
Chavonne (she/her):
Yeah. Absolutely. Absolutely.
Jenn (she/they):
I’m just hearing how the hustle can get in the way of embodiment, because playing is an incredibly embodied experience. We don’t always get that when we’re intellectually engaging.
Imani (she/her):
I didn’t play a lot as a kid. I didn’t play a whole ton. I was in physical therapy from the age of two to 18, so that was after school, most recesses, and then I had aqua therapy, too. So my play was always a part of exercise, and so I didn’t really… I would read more than I played, and then if I were playing, I was playing outside by myself, for the most part. I did have friends. I don’t want people to get the impression that I was some lonely Victorian child, playing in the garden. There were people that would come over, but for the most part, I was by myself. I would play in trees that had fallen over, and create forts and stuff. So I was alone a lot as a kid, but every time I did play, it was like, okay, now how many reps can you do of sit ups [inaudible] or make sure you play with this doll and learn how to latch the Velcro together? And I’m like, I just want to go and play with my [inaudible] and be left alone.
[47:22]
Jenn (she/they):
Yeah. You were talking earlier about the poking and prodding, and there it’s like even if you’re the one doing something, it’s like that instruction to do it in a specific way, also lacks that play. Oh, that sounds hard. So, talking about the second half of our podcast name, “The Rest Of Us,” we’re curious what the rest of us means to you and how you identify within the rest of us. We’d also love for you to share your pronouns again, and name your privileged identities in context here, too.
Imani (she/her):
Sure. So I am Imani. I use she/her/her pronouns. As it pertains to the rest of us, I’m a black disabled queer woman. I grew up very middle class. I was able to go to private schools and Catholic schools. Catholic school and private school, they’re not really interchangeable, but I was able to get a great education and my parents helped me pay for my education. I’ve been able to go to grad school abroad. I speak French. Yeah [foreign language 00:45:11]. But-
Jenn (she/they):
I got the last part.
Chavonne (she/her):
I got the last part, the first and the last.
Jenn (she/they):
Yeah.
Chavonne (she/her):
That’s awesome.
Imani (she/her):
And I have secure housing, and I’m just grateful that I’m able to be a public speaker and do what I love, and talk about disability. I know that it’s a great privilege that not a lot of people can afford or even get the opportunity to do, but I do try wherever I can, to make sure that I’m not the only one. I love being able to be like, that’s a disabled person you need to pay attention to. That’s a disabled black person you need to pay attention to. That’s the greatest privilege of being in this position, is kind of pointing out where opportunities can be, for other disabled people. But yeah, that’s kind of how I identify, as the rest of us.
Jenn (she/they):
Thank you for sharing that.
Chavonne (she/her):
Thank you. We appreciate that, always.
Jenn (she/they):
Yeah. And you already started talking about this, just want to see if there’s anything more there. If not, that’s okay. So we realized the word “rest” is in the middle of our podcast, during an interview last season. We’re like, oh, it’s there.
Chavonne (she/her):
Oh. When did that happen?
Jenn (she/they):
Right? We were talking about rest, and so we want to check in about that, about how it feels and occurs, and show up for you. So you were talking about getting more rest and more naps, inside the pandemic. I’m curious about rest in general. Which, it sounds like has been a conflicted space, which I totally get. That’s how it is for me too, so just curious.
Imani (she/her):
Oh, 100%. There would be times when I’d be completely nocturnal for no reason, don’t know why I got to that point. I would just be up all night and be asleep all day. Had no idea that I could even shift my sleeping perspective. I was diagnosed with sleep apnea in my early 20s, and I hated using the mask because they gave me the ill-fitting one, the one that blows hard air directly into my eyes [inaudible] asleep.
Chavonne (she/her):
No one wants to use that.
Imani (she/her):
It’s really awful. And I finally got a fitted mask. I can’t go without it, but sleep and rest has always been really fraught in my household. Like I said, my parents… Well, my dad, more so, would come home on the weekends and be like, “You need to be up. You need to be working. You need to be doing something. Do a chore.” I was like, “I hate chores.”
And people always have this idea too, that my parents were easier on me because I was disabled, with the household… No. It’s not a thing that happened. So I would have either that or they would give me other homework activity, so if I wasn’t doing chores or things like that, or exercise or physical therapy or the practice I was supposed to be doing at home, my parents would give me their own homework, like, oh, you look bored. I’m not bored. I’m perfectly fine. I don’t want to do anymore homework. So they give me their own homework. And so I was always busy doing something.
But yeah, and my mom was signing us up for chess club. I was like, when did I show any interest in chess? So I would just be at a chess club one day. But yeah, it was very difficult for me to get rest, and when I got to college and had the freedom to have my own sleep schedule, I just turned it upside down. And I didn’t like napping, I didn’t really sleep during the day, because it was just hard and I would wake up with migraines because I wasn’t treating my sleep apnea properly. So it was a whole mess.
Chavonne (she/her):
Do you feel like you… I know it’s an ongoing struggle, but it sounds like you’ve been able to embrace rest in a different way now.
Imani (she/her):
Yeah. Yeah, I do try to rest a little bit more. If I’m sleepy, I do try to go to sleep, because with a lot of the pandemic, other than working, there’s nothing much else to do if you’re not going anywhere. So that’s been helpful, a little bit. And I try to separate my zones out, because I don’t like to be in my room all day and try to sleep all day, but at the same time, I try to make my rest space, my rest space, and my workspace, my workspace. But with everything going on with my kitchen right now, that’s not really possible.
Chavonne (she/her):
Right. That’s so interesting. I never would’ve said… So, I’m a napper, I’m a hardcore napper, and I wasn’t until the pandemic, and I always said it was because I had children, but now as soon as you said it, I was like, wait, was it because of the pandemic and I couldn’t go anywhere and my kids were asleep, so I might as well sleep too? Oh my gosh. I’m going to have to sit with that. Maybe that’s what it gave me. It gave me naps. Because I never napped before the pandemic.
Jenn (she/they):
Yeah, I became a napper in the pandemic, too.
Chavonne (she/her):
Yeah.
Imani (she/her):
Yeah. You can go anywhere in your dreams.
Chavonne (she/her):
Yes.
Jenn (she/they):
That’s right.
Imani (she/her):
And everybody can wear a mask in your dreams, too. No, that was me being [inaudible].
Chavonne (she/her):
Oh my gosh, no, I loved it. Wow, okay.
Jenn (she/they):
Yeah, I hadn’t picked up on that either. We talk about rest a lot. We encourage rest in each other, a lot. We resist rest a lot. Right? It’s just all the normal stuff with rest. Yeah. It’s like my body used to refuse to nap.
Chavonne (she/her):
Yeah. It was a waste of time. It was a waste of time for me.
Jenn (she/they):
May, 2020 or so, I was like, oh, I guess I’m a napper now, and I’ve just been a napper ever since.
Chavonne (she/her):
Yes. Same. Same. I love a nap. It’s the best. And that’s a thing of privilege, that I’m allowed to take a nap during the day, but…
Jenn (she/they):
Very true, very true.
Chavonne (she/her):
… I’m very aware that naps are everything. They really are, for me. Yeah. Yeah. Interesting. Wow. Okay. Sorry. Thanks. I’m going to just sit with that for a second.
Imani (she/her):
Before the pandemic, I would sit up and people would be like, you need to take a nap, and I’d be sitting up there in retaliation, like, I don’t need to do anything.
Chavonne (she/her):
Nope. Mm-mm. Mm-hmm.
Imani (she/her):
Because I couldn’t go to sleep. And I hate it because once you get into a deep sleep with a nap, you have to wake back up again.
Chavonne (she/her):
Oh, yeah. Yeah.
Imani (she/her):
[inaudible] but, yeah.
Chavonne (she/her):
Totally.
Jenn (she/they):
Yeah, I used to try to “power nap,” which is like the biohacker’s version of a nap, where it’s like, oh, if you only do it this amount and you only do this… But that never works for me. No, I need three or four solid hours. So I resisted naps because I was like, it’s just basically like sleeping for another half of a night. I don’t have time for that, so I would just not do it.
Imani (she/her):
Oh my gosh.
Jenn (she/they):
I used to also say, I’ll sleep when I’m dead, and things like that.
Imani (she/her):
Yes.
Jenn (she/they):
Like, how far can I push this young body of mine? I can’t. Just thinking about how now I’m like, I’m sleepy. Who cares what time it is? I’m going to bed now.
Chavonne (she/her):
Going to bed.
Imani (she/her):
Yeah.
Jenn (she/they):
I’m well known in my family. It’s like, “Is Jenn awake,” is a very common group text. “Is Jenna Wake?” No. No, she’s not. Of course she’s not. It’s 7:30, she’s put herself to bed early tonight. Yeah.
Chavonne (she/her):
Yes, I will be at 7:30 tonight. Yeah. Mm-hmm.
Jenn (she/they):
That’s different now. I used to have that bedtime or reverse bedtime procrastination, where I’m like, I didn’t have any control in my day, this is when I finally have time to myself. But now I’d just rather nap.
Chavonne (she/her):
Always.
Jenn (she/they):
Wow. Okay, I’m going to sit with that, because I also hadn’t realized that. It’s true. I was like, I guess I’m a napper now. I remember having this conversation with myself.
Chavonne (she/her):
Yeah. I remember having this conversation with you, Jenna. I’m like, what is happening? I am down. I’ll talk to you in a few hours. I got to go.
Jenn (she/they):
That’s true. We didn’t always nap so readily in the beginning of knowing each other, did we?
Chavonne (she/her):
Yeah. We’d meet at one o’clock and now I’m like, I can’t do it from 1:00 to 3:00. I’m sorry.
Jenn (she/they):
Yeah, we’re like no, no afternoons.
Imani (she/her):
I do one activity a day, so I do one activity a day and then I’m done and I don’t want to do anything anymore. I try to keep it all clustered together so that I don’t have to do too many extra, I don’t know, but extra things, and then I’m just like, nah, no more. Thank you. And that’s about it.
Jenn (she/they):
Yeah. I relate to that. Just thinking about how we’ve shifted things. Chavonne and I do talk about this a lot. I changed my schedule. First of all, I’m a disabled person now, so I have to pay attention. You’re absolutely right. I’m like, oh, I have to pay attention now. No one else is going to do my schedule for me and make sure I’m not so exhausted that I have to cancel my whole day tomorrow. I have to be the one who does that. I used to work evenings and Sundays for a decade, and I do either of those things anymore. I got covid last, I don’t know, Halloween, from one of my nibblings, because they’re in school, they don’t have the same kind of autonomy and access about these things either. And it wrecked me for months and months and months, and I was like, oh, I can’t physically do this anymore. I already had other things that I really, I think, needed to pay attention to, but I refused. Internalized ableism. Thank you so much. But now it’s like, well, it’s so blissful without evenings and weekends, I make sure I have a lunch break. Thank you to my therapist, who was like… Well, I was like, let’s talk about my schedule, and they were like, “When do you eat?” And I’m like, “Oh, while I’m doing other stuff.” They’re like-
Imani (she/her):
No, set aside that time so that you’re actually eating for eating’s sake.
Jenn (she/they):
Uh-huh.
Chavonne (she/her):
That’s a hard one. Yeah.
Jenn (she/they):
Yeah, and it’s also had me consider, how many clients do I want to see in a row? How much can I handle? What would constitute an event? What in my body and my brain? Like you’re saying, it’s one thing a day. And I’d actually love to move into one genuine event a day. One genuine thing a day. That actually sounds so relaxing. March is always my month of doctor’s appointments. You’re absolutely right. When it comes to disability, I’m like, now I have seven doctors, so I have to go to all my doctors. I end up seeing all of them in the month of March, and so I saw one yesterday, it was my dermatologist, and they took a scraping off of a mole on my right butt cheek, and so yesterday I had to come back to a day of work while my butt throbbed all day. I was like, what am I doing? Why did I just go to the… I wanted to just go to the doctor and do nothing else.
Imani (she/her):
Yeah.
Jenn (she/they):
So I really relate to that. I guess that’s a whole ramble about, yeah, one thing a day sounds incredible.
Chavonne (she/her):
It’s that conversation of-
Oh, I’m sorry. Go ahead.
Imani (she/her):
No, I was just going to say, the eating part is the hardest part for me. So I have an eating disorder and I’ve had an eating disorder for years, but-
Jenn (she/they):
Me too.
Imani (she/her):
… I also had gastric sleeve surgery, and I’ve never actually had hunger or full cues. So I can binge eat all morning and then go two days without eating. Or I’ll forget to eat or I just don’t… It’s so tedious to think of things to eat, all the time. I’m so tired of having to make a decision. Please, somebody pick for me. So, I’ll just basically just have lunchables in succession. I have a breakfast lunchable, I have a lunch lunchable, and then if I make a salad into a dip, that’s dinner.
Jenn (she/they):
Snacks make a meal.
Mayaneli (she/her):
They do.
Chavonne (she/her):
Yes, they do.
Imani (she/her):
Absolutely. So it’s just tedious. People are like, what do you want to eat? I’m like, you choose, I don’t care. Please just choose [inaudible].
Chavonne (she/her):
Please don’t ask me. Please don’t ask me.
Jenn (she/they):
I love adult lunchables.
Chavonne (she/her):
Yeah.
Imani (she/her):
[inaudible] please don’t call on me. I don’t want to answer you.
[59:33]
Chavonne (she/her):
I don’t want to. Please don’t make me. Yeah, absolutely. Absolutely.
How has your work around social media misinformation, disinformation, and disability advocacy, changed and challenged your own relationship with your embodiment? What learning and unlearning feels like it was only possible because of the space you hold with and for your viewers and yourself in real time?
Imani (she/her):
Sure. So I think that just with anti-blackness, because anti-blackness is the core upon which the United States is built, I think it was my duty also to unlearn my own ableism as well, as well as internalized ableism. I think that there were a lot of things that I would say in the beginning of my social media advocacy, where I’d be like, “Oh, I’m 100% sure on this. Nobody would ever want to cure. Nobody would ever want euthanasia or nobody would ever want, A, B, or C, this is just pressed upon us.” And I think a lot of advocacy, for me, has been kind of settling with that it’s more mercurial than that. It’s less black and white. People are more complicated than the labels that we give them. And I think with social media, we polarize ourselves outside of our own humanity, without realizing there’s more nuance to who people actually are, than the identities represented of them online.
And I think that part of the issue is that when we’re in online spaces, is we only see one version of somebody. We’re only seeing the version that they want us to see. And of course, those barriers and those lines kind of disintegrate as social media has progressed and more people become more open online. I wish there were more people with secrets. But truthfully, I think if we leave room for what we don’t know, that is just [inaudible] I want to exist in. Not necessarily being absolute in what I know, but being more open to understanding new things about people.
Ever since getting my communication degree, my Master’s degree, understanding and listening to people in such a way that leads me to make conclusions or make predictions or utilize way that people are speaking, has been so helpful. And that requires listening to people as they are, not how I want to categorize them, not picking and choosing things from what they are saying, based off of my own biases, but actually listening to what people are saying, because I really just like this notion that people are a mystery. Especially with the age of social media, they’re not… If you listen to what they’re saying and how they’re saying it, it will give you all the keys that you need to know for how populations of people, you could extrapolate that information from populations of people and apply it to things like politics, apply it to things like disability, apply it to things that are going on in our current events.
So that’s kind of where I sit right now. And I think, I would hope at least, my social media audience can kind of see that growth. Or at the very least, for me, my biggest worry is that people put me on a pedestal as a black woman. Especially, I get really nervous when people put me so high up, because it’s just a longer distance to fall. And that’s great. I get really scared about people idolizing me or being really weird around me, and I hope people will see me as a person. And I think it’s very difficult because as somebody who grew up disembodied and disassociating and presenting versions of myself to people so that they would want to like me, to not be known for a very specific version of who I am, is also very difficult. But I think realistically though, I really just hope people see me as somebody that’s interesting and that is listening and is… Interesting things to say about disability [inaudible]. Not always good things, but interesting things. I can’t promise to always be good.
Jenn (she/they):
Oh, I’ve never heard anything not good from you. And that’s not to pedestalize you. It’s because you have a really… Your discernment about what’s important about something, I find very interesting, just to use that word you just used. I’m like, oh, I hadn’t thought of that. Lik, wow, that hasn’t crossed my radar. Oh, I really get that I’m looking at something inside of things without a real context, and you helped me see context. I love that. Yeah. You are a whole person.
Chavonne (she/her):
I’ve learned so much from you. So much. So, so much.
Jenn (she/they):
Yeah.
Imani (she/her):
Thank you. I appreciate it.
Jenn (she/they):
And you’re really talking about a lot of raw and vulnerable things today, which I really respect in another person. I love that kind of energy around me to talk about things that are hard and to talk about them as realistic. Like you’re talking about how people talk. I’m like, it’s just a dose of reality. I just find it very humbling and I respect it very much. It is interesting. I was going to say fascinating, but that word does not feel like the right word there. It’s not fascinating to me. It’s interesting. I’m not like, Ooh, special project, I need to be fascinated by… That word doesn’t feel right. But it’s interesting, I take a lot of notes. I do a lot of, what is that? That’s a term I never heard before. That kind of stuff. It is definitely very interesting.
And I’m curious, I’ve heard, this is not a planned question, but I am curious, there’s, talked about as multiple models of disability, moral, medical, and social, and it’s something that I hear a lot, it’s something I have on my own website, like, Hey, I acknowledge these exist,, let’s talk about how they can all be oppressive, I’m curious if you have any thoughts on that, just considering that you have worked in the disability organizational space. And if not, that’s okay. We can just move on. Not trying to make you my educator. I’m just curious if there is.
Imani (she/her):
So the ones I most interact with, I’m not too familiar with the moral model. I’m assuming, is it close to the charitable model?
Jenn (she/they):
It’s close to the charitable model, yes.
Imani (she/her):
Okay. So as it pertains to disability models, I think always talking about them with the backdrop of capitalism is really important, too. When we talk about a disability model, we’re not just talking about curative medical interventions. We’re talking about it through the backdrop of a multimillion dollar industry, because that’s what our medical [inaudible] present answers about people’s bodies that are simply medicalized and not giving the social… Not meeting the moment socially, it leaves room for error. I don’t think that there’s many diseases or disabilities that will ever get a cure, unfortunately. And I know that that’s really disheartening for people to hear or for me to say. But personally, I don’t believe that. There’s a lot of money to be had. And the more rare your disability is, the less likely you are to come to that conclusion or get a cure. As it pertains to social model, I think we do put somewhat too much of an onus on simply the physical environment, like the societal responsibility, because it’s more of a mix of all of these things, except for the charitable model, because I really don’t like the charitable model. I think it puts too much onus on private individuals and corporations and philanthropy to solve a problem that really should be socialized. We should not be relying on organizations to pick and choose who gets to survive. We should be putting [inaudible]. Because [inaudible] in a lot of ways.
We’re giving money to organizations, we’re giving money to philanthropy, and we’re trusting that the wealthy know what to do with their money, which they’ve never demonstrated a capacity to do. So I don’t like that idea. Like I said, I’m not too familiar with the moral model, but as it pertains to at least these three, I think we need a more social approach to disability than just, Hey, this is the environment you live in, let’s make it all accessible. Because there are people with invisible illnesses and disabilities who will never be accommodated properly by simply addressing it through a societal lens. But at the same time, not rely solely on the medical industry to provide the cares and treatments that we need, especially with the backdrop of capitalism and people trying to make a quick buck off of so many illness or even just their deep desperation to be treated as normal again.
Because for me, that’s what it boils down to. I’ve never had the opportunity to be seen as able-bodied. I’ve lived my entire life in a disabled body, but for so many people who have acquired the disability or who are new to their disability, I’ve always seen a certain desperation to return to a normal, at which point they will spend any amount of money, any amount of resources, any amount of time, to get back to where they were. And I think the medical system, knowing full well that we’re kind of [inaudible 01:06:25] these people, that conclusion may never come. It needs to be more holistic than just one or the other. It needs to meet in the middle and say, here’s what you have access to, if you want to go down this medical route, or here’s how society can meet the moment if you have a disability that our society can accommodate.
And it’s never going to be perfect. I don’t think disabled people are seeking perfection. I think disabled people are seeking just acknowledgement in the first place. There’s so many [inaudible] that just never, ever even bother to ask about accessibility or accommodations or inclusivity at all. And it really takes working with us and talking with the disability community to understand what some of those accommodations and what providing space to this community looks like. So yeah, that’s what I kind of think about the models. I used to be super hardcore the social model, but that was really just me centering myself and centering my disability needs, because as somebody with a physical disability, that’s what I come in contact with, the most. But when I started understanding more about invisible disabilities and neurodivergence and things like that, society was never going to be able to fully, completely meet those needs of those types of people. And so it takes me being outside of myself and being myopic about my disability advocacy, to understand where those ideas come from.
Jenn (she/they):
Ooh, thank you for that. So it’s really considering them, I think what I’m hearing in your approach is considering them in the… So you said larger context of capitalism, and that also means the larger context of each other, like how are all these things interacting? That’s a really interesting space to explore. That’s a journal topic for me. I love that, because for myself, for my disabilities and for my clients with disabilities, we all have totally different sort of reflections about this. And it’s like, to try to change a whole something is… The bigger we go, the more people are going to be left out, because there’s going to be things to focus on, and all of that. But it’s just making me think a lot about, what are all of the, not smaller ways, that makes them feel insignificant, but just-
Imani (she/her):
[inaudible].
Jenn (she/they):
Yes.
Imani (she/her):
It’s like intricacy. Even, a perfect example would be… Hold on a second. They’re drilling something. A perfect example would be the ADA bathrooms in hotels, because this was always the biggest pet peeve, because I stay in a lot of hotels. So when I go to a hotel room, people will be like, oh, we got you the a DA room. And I’m very specific about what I need in an accessible bathroom, because a bathroom that is designed for somebody in a wheelchair, could kill me [inaudible] a lot of times… How do I put this? What these penny pinching billionaire corporations will do, they’ll make it all one level so that the water gets out of the shower. And then what they’ll also do is cut the shower curtain a foot short so they don’t have to [inaudible] because they’re lazy. Sorry. So they cut the shower [inaudible] there’ll be no barrier between the shower and the rest of the bathroom. So it becomes a massive slip and slide.
Now [inaudible] they might have a little bit easier of a time navigating a space like that because if you’re just simply rolling into the shower in a shower chair or a chair that can be in the shower, then you could just roll right out. But for me, I walk on crutches, which means that have to I put pressure on four different points that can splay out at any point in time, just to get in and out of the bathroom. And people think, because it’s ADA, it’s one size fits all, but we have conflicting or even just differing accessibility needs that, if mine are met and theirs were not, the bathroom wouldn’t be accessible, but that theirs are met, but mine are not, I could hurt myself as well. So it’s that stuff.
Chavonne (she/her):
Yeah. Yeah. I keep thinking the word “holistic,” even though I hate that word because it’s so co-opted, whatever, I’m like, a holistic approach.
Jenn (she/they):
Yeah. Yeah. And also, I love the intention behind-
Chavonne (she/her):
Intersectional. Yeah. Mm-hmm. Mm-hmm. Mm-hmm.
Imani (she/her):
Yeah. And-
Chavonne (she/her):
Absolutely.
Imani (she/her):
And so when I ask for a bathroom, I usually just ask for a bathroom with a bar in the tub, rather than [inaudible] because an ADA bathroom usually gets very dangerous when they’re done-
Chavonne (she/her):
Yeah.
Imani (she/her):
So, yeah.
Chavonne (she/her):
Totally. Yeah. Oh, wow.
[1:14:11]
Jenn (she/they):
So we kind of, which is always great when this is happening, we’re already kind of touching some of these questions that we had. I’m just curious if there’s anything more here. The next one, in your work and personal life, I’m curious what we can learn, unlearn from each other, surrounding ick, which is really our phrase for phobias and isms. We’ve talked about anti-blackness, we’ve talked about ableism. I’m just curious if there are other things that land in this space about maintaining, discovering, or remembering access to embodiment your own whole humanity and beyond. In other words, are there things that you notice as patterns, that happen around phobias and isms? And again, I’m just realizing in my own question that phobias is an ableist word because I don’t really mean actual phobias. I mean people’s comfort being prioritized. And then isms, systems and things that we’re part of. Just checking myself on this question, note to future me.
Imani (she/her):
Well, the reason why-
Chavonne (she/her):
Ooh.
Imani (she/her):
The reason why they use phobias has very little to do with you and everything to do with the pathologization of racism and everything else. It has nothing to do with… Because we have Islamophobia, so the suffix “phobia” is out of fear, but the suffix “ism” is a practice. You see the difference?
Jenn (she/they):
Yeah.
Imani (she/her):
So a fear something you can’t control. A practice is something that is embedded. So those two words…
Chavonne (she/her):
Ooh. Mm-hmm.
Jenn (she/they):
I get that. Yes, it does. Ooh, that’s important.
Imani (she/her):
Yeah. So we use these words differently, specifically for groups that we are marginalizing. We use “phobia” for groups that we are marginalizing but don’t actually want to contend with the ways we are systemically marginalizing them. We kind of present it as a fear that cannot be controlled, and therefore it is seen as more acceptable because you can’t control somebody’s fear.
Chavonne (she/her):
That was spicy. Whoa.
Imani (she/her):
I did a full [inaudible] on suffixes, because that part-
Jenn (she/they):
No, I love that.
Imani (she/her):
Yeah. So there are certain things we treat as systemic, whereas there are certain things we treat as just embodied and uncontrollable. But as it pertains to your question, though, I think that there’s always this issue of racism in disability spaces, and always there’s a lot of just ignorance around disability in most other spaces. I think that there’s this idea about disability circles, that we are somehow different, that society does not reflect itself as, not holistically but it’s as acutely in the disability community as any other community. There’s racism here, there’s sexism here.
Chavonne (she/her):
Oh, it’s everywhere. Yeah. Mm-hmm.
Imani (she/her):
Right. And I think it kind of boils down to whether or not you see disabled people as people. Because we so often… There’s so many… The same bigotries that you would find in a non-disabled white person is often written off as a part of their disability when it’s a disabled white person.
Or people will focus heavily on, oh, they’re a disability advocate, they should know better. They’re still white. They’re still a part of this part of the society. That doesn’t go away, simply because you have a disability. And it really boils down to, like I said, who we actually give the power to be a person, to. And I think that people lack that awareness. Lack that awareness. And then also in other circles, I remember the Movement for Black Lives had to be called to the table by the Harriet Tubman Collective about excluding disabled people in their statements about which black lives they’re protecting. I want to say that that was rectified, but there’s so many spaces where we’re talking about marginalization on the basis of race or religion or sexuality, and disability is just never mentioned, despite the fact that disability plays a huge role in how they’re marginalized. So those are always things that kind of always come up against friction with different communities. So that’s what I always help people to look out for.
Jenn (she/they):
Wow. And thank you, this language point that you brought up is so important, because I want to be able to even ask myself this question more clearly. So I really appreciate that. And the ultimate intersectionality that’s assumed to be in certain spaces, just hearing you highlight that it’s not. People are still white, even if they’re also disabled. And if they haven’t contended with that, if they’re not aware and being intentional about that, just the same old racist nonsense can get in there, too.
Imani (she/her):
Yeah. So the statistic that I always give people to illustrate, always pisses them off. But when it comes to electoral politics, disabled people are nearly split down the middle between conservative and democrat. People assume that most disabled people are voting liberal and more progressive. They’re not. It’s something like 51 to 43%. So 43% would be Republican, 51 would be Democrat. And part of the reason why, this is really interesting because part of the reason why is because we only talk about… Our society has only recently started contending with disabled people as members of society. [inaudible] real about it, but because… They make fun of Republicans for it, but because Republicans have an aging population or aging voter population, they have to talk about disability in order to get their aging population to the polls. In the state of Pennsylvania, Act 77, the bill that allowed for universal mail-in ballots for the 2020 election, that was proposed by a Republican.
When we talk about these things, people are always so confused… They’re like, “The Democrats are so progressive on disability,” and I’m like, “Are they that progressive on disability? Or do they do paint-by-numbers diversity?” Is it [inaudible doing the things that they say that they’re doing? Or do they kind of put people in positions of power, who reflect the population but are still doing the same back-handed things? So that’s what I always use [inaudible] because they’re shocked when I tell them it’s not as clear-cut of a divide is you think it is. It’s not like, oh, these are disabled people, they’re giving so much money to disability services. Most of that money’s going to private equity. Our disability services, our hospital services, our nursing homes, bought out by private equity. So whenever people are like, they’re giving so much money to the disability community because of A, B, or C initiative, I’m like, yeah, but where’s that money actually going? Because [inaudible]. So when I try to illustrate that point, they always get pissed off at that statistic.
Chavonne (she/her):
It makes so much sense, though.
Jenn (she/they):
I think it makes sense.
Chavonne (she/her):
Oh my gosh. Yeah.
Jenn (she/they):
Yeah.
Imani (she/her):
They get really mad. But I always try to remind them, if we only talk about disability through the lens of aging, of course there’s going to be some politicians that are more ahead on that than others. And to be honest, I’ve been lobbying, I went lobbying once with my old job, and the people who are showing up to meetings on disability are not always who you think they are. Yeah.
Jenn (she/they):
If we see people as full human beings, it’s also noticing that human beings can be flawed. Human beings can not be reckoning with their own stuff, and that can be something that we have to consider. Wow.
[1:16:51]
Chavonne (she/her):
Absolutely. Whoa. Thank you so much for being here with us today. What do you think we all can do to make a difference with what we’ve learned today?
Imani (she/her):
I think one of the things that is incredibly important to the disability community is that everybody keep an eye on legislation around private equity and disability services. Private equity is a house on fire, that I don’t think people are really all that wary of, just yet. And they should be. They very much so should be. It’s not even a joke. People are dying. They’re doing studies on reduced outcomes for people.
Also making sure we invest in home and community based services, but also simultaneously keeping the private equity out of it. Making sure that you pay attention to your legislators that are putting together laws, like care courts and things that would remand people to care without their consent. That’s a very slippery slope, especially when we are in a very big protest age, unionization age. That could be weaponized against anybody, and I think that so many people are so of the mind that, oh, it can’t happen to me, that they’re not paying attention to these laws. Making sure that we embody self-care, but not in the self-care of like bath bombs and Bath & Body Works sales, but actually checking in with ourselves about our own boundaries and our own needs for rest, because that makes things go longer. Once we actually decide to take care of ourselves in a way that makes us restore and be kind to ourselves and to each other, the better we are collaborators and workers for the liberation we actually desire.
Jenn (she/they):
Wow.
Chavonne (she/her):
Wow.
Jenn (she/they):
I’m like, I don’t know how to do any of that. So I guess I better figure that out, because that’s-
Chavonne (she/her):
Yeah. I’m going to go read for the next seven days. Yeah.
Imani (she/her):
We’re all working on it.
Jenn (she/they):
We’re all working on it. Yeah.
Imani (she/her):
We’re all working on it.
Jenn (she/they):
Wow.
Chavonne (she/her):
But what matters is that you’re working on it. So yeah, absolutely. Mm-hmm.
[1:24:24]
Jenn (she/they):
Thanks for that.
So as we finish up this episode today, what would you like everyone listening, to know about what you’re up to, Imani, and how they can find you, and what direction do you see your career in public speaking, taking in the future?
Imani (she/her):
So it’s a complicated question. I don’t think [inaudible] anticipated to be so complicated. I think with my career, the more visible I become, I think also the less visible I want to be. I feel like I’ve spent so much of my life being consumed, whether that be in public, with people that say the weird stuff about me, or online, I’m really trying to contend with that right now. But that being said, I do have a book coming out next year. It’s called, “If I Were You, I’d Kill Myself.”
Jenn (she/they):
Wow.
Chavonne (she/her):
Oh, I can’t wait to read that. I can’t wait to read that. Sincerely.
Imani (she/her):
You need to explain what that title is from. So it’s basically what non-disabled people say to me. I said it at the beginning of the…
Jenn (she/they):
Yeah.
Imani (she/her):
But it’s something that as a disabled person, I internalized. And then also, I have Patreon. I am trying to reinvigorate the blog. I’ve stayed away from so many things that I’ve enjoyed during the pandemic, that I’m trying to get back to [inaudible] what I actually do love. But I think advocacy took a different role for me during the pandemic, and I used social media a lot more. I think I want to return to the blog and return to the more insular places that I’ve been. But yeah, that’s kind of what’s up for me and that you could always find me around. I come to universities, I come to nonprofits, to speak, so that’s stuff I love, talking to people. I just love talking. And that’s what got me kicked out of my one-on-one piano class at five years old.
Jenn (she/they):
I also love talking.
Imani (she/her):
[inaudible].
Chavonne (she/her):
That was fantastic. Yeah. I was too much of a talker to do anything at that age, too.
Imani (she/her):
She literally looked at my father and was like, “I literally cannot take your money. I swear to God, I can’t.” I was like, “I talk about my doll, Angela.” She’s like, “Look at her. She’s not going to do this.”
Jenn (she/they):
I love that. Well, thank you, thank you so much for being here with us. As I said, you’re a dream guest. And I mean as a whole person, because I think what you said is really important about how we attach ourselves in these parasocial relationships and pedestalize people, and then stop seeing them as human, which is something we’re already talking about in a disability justice-oriented direction. That would just be another level of that. So I love that invitation to do that. For us, for anyone listening, I think it’s so important. You are a whole person. You’re an incredible person.
Chavonne (she/her):
You are. Mm-hmm. Mm-hmm. An absolute delight. Sorry, I just had to dance for a second. It was amazing. I’ve listened to you as a guest on many podcasts now, actually, and it’s just been a joy. It’s a dream… I’m just going to repeat what Jenn said, because I’m obviously not using full sentences. It’s a dream come true. Such a dream come true.
Imani (she/her):
Thank you so much. And thank you so much for asking me to be here, Jenn, Chavonne. Maya, it was lovely to meet you as well. So, thank you-
Jenn (she/they):
Yes, thank you, Maya.
Chavonne (she/her):
Thank you.
Jenn (she/they):
Thank you.
Mayaneli (she/her):
I learned so much. Thank you.
Chavonne: Thank you for listening to Season 4 of the Embodiment for the Rest of Us podcast. Episodes will be published the first Thursday of every month-ish (in case we need some wiggle room) wherever you listen to podcasts. You can also find all podcast content (including the transcript and show notes) at our website, EmbodimentForTheRestOfUs.com.
Jenn: And follow us on social media, on both Twitter @EmbodimentUs and on Instagram @EmbodimentForTheRestOfUs. We look forward to continuing this evolving and expanding conversation in our next episode.