For more, follow: 
Imani @Crutches_and_Spice
@KendallCiesemier
@Ms_Magazine

Transcript:

KENDALL CIESEMIER [00:00:01] Welcome to United Bodies, a podcast about the lived experience of health. I’m Kendall Ciesemier, your host. 

Hey, this is so exciting! The first episode of United Bodies. This is a project I’ve been dreaming about for so long and I’m just so happy to be sharing it with you. You see, I was born into illness and disability, and it’s been a strong force in my life. Health of all varieties shapes our daily experience in ways that so often go unacknowledged. That’s why I created United Bodies to bring out more conversation. 

Together, throughout the season we’ll explore how different components of our health, mental, physical, social, and spiritual interplay with one another and intersect with the whole of our identity. It’s my belief that when we understand these forces in our lives, we can meet both ourselves and others with more empathy and maybe even realize that our fights for equity, justice, freedom, and accessibility are united. 

The first half of our season is focused on addressing and navigating the world we have. The second half will be focused on envisioning and building the world we need. There will be a new episode each week and I think some of the guests and topics will surprise you. With that, let us begin. 

One of the most present themes in our lived experience of health over the last few years is the war on bodily autonomy. Whether it’s the overturn of Roe v. Wade and the loss of legal abortion for millions, or the repeated pernicious efforts to ban gender affirming care for trans and non-binary people. But the origins of the ideology driving these attacks is actually not new. It lies in the history of eugenics, racism, and ableism. And in many ways, it’s experienced in the everyday lives of disabled people. You can think of us as, you know, canaries in the coal mine if you will. 

Disability activist and creator Imani Barbarin says none of this is surprising. We’ve been dealing with it for a long time. Imani Barbarin is also famously known as Crutches and Spice everywhere online, including her blog, where altogether she’s amounted nearly 1 million followers by delivering the truthiest takes on culture and politics as it pertains to Black and disabled people. 

She joins me to discuss all of this and more. Imani, welcome to United Bodies and thank you so much for joining me. 

IMANI BARBARIN [00:02:43] Thank you so much for having me. Lovely to be here. 

KENDALL CIESEMIER [00:02:45] So, Imani, a lot has happened in the last few years. It seems that every day there’s a new assault to our bodily autonomy and our body safety as people born into disability. I think this might not be surprising to you. It certainly isn’t surprising to me. I feel like it was a truth that I picked up through observation as a child and experience as a child. I was wondering if we could begin our conversation with talking about the world that you were born into and who and what might have taught you lessons about body autonomy or body safety early on. 

IMANI BARBARIN [00:03:23] Yeah. So I am a disabled Black woman. I grew up in suburban Pennsylvania and my family – I was fairly middle class. I was very privileged growing up and my parents did a lot to protect my body autonomy. I remember yesterday I was in a live and I was talking to people and I was trying to tell them my dad used to fight people who would try to grab me and like pick me up from my walker because they wanted to have like, that feelgood moment of, like, hugging a disabled child. And my parents, like, “No, leave her alone. She’s walking. You know, you’re going to disturb her. You’re going to put her off balance.” And it’s really weird because my parents were very, very stringent about people not touching me and me being able to say no to people touching me. But then I learned that people get belligerent and angry when they don’t have access to like physically touching a disabled person. And so after a while, you start to learn that if they want to lay hands and pray over me, it’ll just go faster. Every single person you meet comments on your body in some way and it never ends it like, if you’re fat, if you’re disabled, if you’re Black, it never ends, the commentary, the conversations. And so you really never grow up as a disabled person, particularly as a disabled Black person, feeling like your body is not under some consideration at all times. 

KENDALL CIESEMIER [00:04:46] And what a difficult thing to contend with as an adult now, but especially as a kid, right? To like not perhaps, I mean, I know that I felt this way, never really feel like you have ownership over your own self in a lot of ways. Like you’re not the sole owner. You don’t always get to determine or choose what happens. It’s so tough. And I think that message really ingrains itself in us. 

IMANI BARBARIN [00:05:11] Yeah, and it’s interesting too, because my mom and dad were very adamant on me making my own medical decisions from very early on. I would be in the doctor’s office and the doctor would be like, “Oh, you know, Imani’s parents, here sign this consent form for surgery.” And my mom would look at me and go, “Do you want me to sign this? You don’t have to say yes. Do you want this surgery? This is what the surgery actually is or what it’s going to do. And here’s how long it’s going to take. Here’s what the promises are of the surgery.” Because one of the things that people don’t realize is that operations and medical care is nothing more than a promise. Then like it’s, it’s more of just a theory of what could happen. Things can go awry at all times. So you want to know the pros and cons and even at four years old, people tried to explain it to me. My parents specifically tried to explain it to me as best as possible. 

KENDALL CIESEMIER [00:06:01] And sounds like you have really great parents. I also have really great parents and feel very grateful for that, especially in contending with everything else. You know, it’s very much your history and it’s our collective history as disabled people, the fight for autonomy and safety still ongoing. There are moments as I grew up that I think eventually connected my personal experience to the historical experience. And it wasn’t in school. We didn’t learn disability history. And suddenly, I think to me really clicked as like, oh, the behavior that I had contended with or experienced in the ecosystem I lived in, it all made sense at some point. I could trace it back to an origin in history where things were much more obvious and much worse in a lot of ways, right? Do you remember learning disability history? And I guess I wonder what it did for you to understand that collective struggle. 

IMANI BARBARIN [00:07:00] Yeah, it was never really intentional that I learned disability history. I learned a lot of Black history and there’s always mentions of illnesses or disabilities, but it wasn’t really discussed explicitly in the conversations being had about Black history. But I remember in college I learned disability history through other means. I learned it through like communications course because I wanted to talk about the perceptions of disability in pop culture and media and film and TV and my professor was like “go for it” and it was like, “Just go for it I don’t care,” and he’s like, “I want you to really explore what you want to explore. Just hand in your assignment on time.” And that’s really when I started feeling, oh, I’m not alone in experiencing this. People treating me outside of the realm of normality is not new. It has historical basis. And the more you kind of peel back what your daily interactions are informed by, the more you feel less alone. And so that’s kind of where that all started for me was in college when I was like: let me look into what I’m experiencing. And even when I was younger, there wasn’t a lot of emphasis on disability history. But I would, I would be forced to explain to my classes, like in kindergarten and first grade, what my disability was, and they would do like a disability share day because just explain what’s going on with Imani and why she’s out of class, you know, three times a week for physical therapy or occupational therapy. And so, but I never really connected that to the historical context until I was much older. 

KENDALL CIESEMIER [00:08:33] Yeah. And who were people or figures or leaders that you looked up to in that way, or maybe saw yourself and if you did find those figures in your life. 

IMANI BARBARIN [00:08:45] The very first thing that I really remembered, like attaching to was Audre Lorde and her story about the cancer journals and reading about her experience, kind of reevaluating herself. It’s really strange because I don’t know if you’ve had this experience, but as somebody who was born with my disability, you never get to adjust into disability. You just are. You just have a disability. And so it’s kind of fascinating to kind of watch this construction of self in real time and how you do set up boundaries and space for yourself when it was just a given like that’s just what you have to do to survive. 

KENDALL CIESEMIER [00:09:26] There was no before, right? I think in a lot of people they have stories of a before and after. I think that being born and having that and just inherent in your experience, it feels different to me. 

IMANI BARBARIN [00:09:41] It does. 

KENDALL CIESEMIER [00:09:41] You know, I often think of disability narratives and the stories that we see and how they’re talked about or how we’re even just expressed in like generalized conversation, news conversation and cultural conversation. And so often I feel like we rely on there being a before in order to appreciate what someone had to lose. Like we have to have known them before and in order to care about the loss of it all, I guess. 

IMANI BARBARIN [00:10:08] Yes. 

KENDALL CIESEMIER [00:10:09] You know, obviously that angers me as someone who feels like, well, there wasn’t a before. So there’s an assumption that it’s kind of like these things are okay because they’re just have always been. I don’t know if that relates to you in any way. 

IMANI BARBARIN [00:10:25] I think for me, it’s not necessarily an anger that comes forth. It’s more like who I’ve been defined by what I’ve been defined by has been my disability the entire time. And so watching people develop a disability identity in real time is isn’t frustrating in the sense that I never had that. It’s watching people realize that this is what has always existed. 

KENDALL CIESEMIER [00:10:51] Yeah, yeah, yeah. 

IMANI BARBARIN [00:10:52] What I find the most frustrating though, is that people develop their disability identity in real time, but they don’t unlearn their ableism in real time. That usually has to come later. Yeah, that’s where I get frustrated, where I’m like, you don’t have like, you don’t have this choice. You don’t have the choice of believing the same narratives that you did before. Your survival depends on what exists in what is right now. And people have always been like really perturbed with me because I say I say to people, if you’re looking for–if your immediate reaction to becoming disabled is to look for a cure, you’re going to set yourself up for failure. And it’s not because I don’t think cures exist or that treatments exist or that doing better exists in your own body. But oftentimes what I find is that the experience of ableism in society, the lack of autonomy in being believed and being seen, is so jarring to people that their first reaction is, I want to get rid of this immediately no matter what, and I’m going to forgo every single thing that would make my life easier terms of accessibility and community and accommodations because I’m going to just fast track my life towards searching for this cure. 

KENDALL CIESEMIER Yeah.

IMANI BARBARIN And that’s where I’ve always seen the most frustration is you have to unlearn that because it’s it’s going to be slow going and you’re going to frustrate yourself the entire time. So that was a long tangent, but that’s kind of where my frustration comes over isn’t from like watching the privilege of being able to just now come to this conclusion. It is still wanting the privilege to exist in a disabled body. 

KENDALL CIESEMIER [00:12:33] Mm hmm. Mm hmm. Yeah. You know, I think I want to I want to talk a little bit about the pandemic, the pandemonium, the Panera Bread…

IMANI BARBARIN [00:12:43] The panini.

KENDALL CIESEMIER [00:12:44] The panini. Whatever you want to, however you want to call it the. 

IMANI BARBARIN [00:12:48] The Panda Express.

KENDALL CIESEMIER [00:12:48] There you go. Very good. Very good. You know, I think it’s exposed this disdain that felt maybe a little bit under the surface. I think the burden narrative that follows disabled people became very loud during the pandemic and has been. What’s it been like for you to see it operate so loudly and so pervasively in this time? 

IMANI BARBARIN [00:13:14] Oh, boy. There’s just like this underlying rage I feel, because on the one hand, you knew this was going to happen, right? You know exactly how people are going to react to being told that disabled and elderly people who were immunocompromised are going to be the primary victims of the pandemic. 

KENDALL CIESEMIER [00:13:35] Once they said that, the very first moment, I was like, we’re screwed. 

IMANI BARBARIN [00:13:40] Like, it was I not even joking. It was almost felt like I was in that moment, I was connected to every single disabled person on the planet and just going, Oh, shit. 

KENDALL CIESEMIER [00:13:52] No. 

IMANI BARBARIN [00:13:54] Because you know, you know exactly how people are going to act. People do not even like to be minorly inconvenienced to help disabled people out or just to abide by legal restrictions on accessibility, let alone putting their lives on hold to make sure that we are safe and alive. And watching that happen in real time, it’s almost kind of like watching dominos fall, you know, which ones are going to fall next. Like, you can see it. You could hear, you could feel it. And from there you can go, oh, since they’re not going to take any precautions for disabled people, this is going to impact Black people, queer people, indigenous people, this is. And then like the next week, that exact thing would happen like that exact data would happen or and then you would find, oh, well, the religious organizations are not going to, you know, enforce masking at churches and things like that. And then that thing would happen, you know, and then you started with the anti-vax rhetoric and, you know, you hear things that you’ve heard for years from people who, you know, we won’t name communities, but you know who you are, but you hear things you’ve heard for years being played on this massive scale. And all of it leads to the deaths of disabled people and people of color and queer people and trans people because we are the most impacted by disability statistically. And so you’re you’re trying to warn people. And I, and normally, you know, before the pandemic, there was a lot of thought within the disability community saying we shouldn’t have to tell people that they could possibly become disabled in order to care about disabled people. But with the pandemic, it became imperative because the only way we could get people to care was to center themselves. Was the center what their own experience was going to be with disability later on. And even still people were like, Well, whatever. 

KENDALL CIESEMIER [00:15:51] I eat healthy food, so I’m going to be fine. I can I run? You know, I run. And, you know, I think disabled people inherently know that, like, our bodies are so not in our control and you can’t keep your body from bodying all over you. There’s nothing you can do to, you know, prevent that. And I think that that’s a really hard pill for people to swallow. You know, I understand. I understand it. I empathize with it. But I thought that I mean, that piece of rhetoric was really interesting, though, Like, I’m going to be fine. It’s been definitely really challenging to watch. I think also the narrative around like, well, that’s not my problem. I can go out and live my life. You can stay home. As if disabled people don’t have jobs or lives or jobs or families. Or just, like, literally, they stay home all the time anyway, and they’re in the shadows of like, the assumption was just so interesting to me and really telling. 

IMANI BARBARIN [00:16:56] But it also connects to that historical context and learning about disability historically, right? Because you learn about the ugly laws and institutions and institutionalization. Yes. They literally do not realize we live among them. We are erased from their minds. 

KENDALL CIESEMIER [00:17:11] Absolutely. Also, during this time, during the beginnings of the pandemic, on display again and again, the horrific disregard for Black lives, the murder of George Floyd and Breonna Taylor, it put a real spotlight again on the issue that continues. How did this all coalesce for you as a Black disabled woman? Like how do you see the movements as connected? 

IMANI BARBARIN [00:17:37] I remember the summer of 2020. I was working and I remember coming back to work because I think it was July 4th or that weekend and it was some day off and then the next day everything was back to normal. And I could not I could not think straight. And it wasn’t the first time that I had experienced that where I watched a Black person be killed by police and then go back to work the next day and everything is normal. Nothing changes for anybody else but for Black people who are engaged in these conversations. And it was fascinating because people have always thought that police violence and disability do not really go hand in hand when data indicates that they’re literally woven together. And I find it interesting because…

KENDALL CIESEMIER [00:18:29] It’s actually 50% of police killings are disabled people, of disabled people. 

IMANI BARBARIN [00:18:35] Yeah are people in a mental health crisis. Yeah. And it’s and you watch and you’re watching as Black people acquire PTSD from watching these things. And then you’re watch as like you said, half of people are killed by police. Then you watch as people are disabled from police. And it’s everything. It’s it touches everything. And you, watch as neighborhoods, who are redlined, have a historically high rate of asthma and respiratory illnesses. And you watch as racism disables people both mentally and physically. And it’s hard because in in the Black community, talking about disability is still relatively taboo. It’s not something that you openly admit to. And so conversations along these lines are very difficult to have because not only do you get the sentiment that – it’s not that disability doesn’t matter, it’s that disability has killed us for so long that you can’t admit to another weakness. You can’t admit to another way in which you are Other. And having those conversations can be very difficult because you you say sometimes you to say the word disability if you need the services and the system doesn’t help in the sense that it’s meant to to discard of us, it’s meant to discard of Black and brown people who are applying for benefits and help and assistance. And we have continuously pumped money into the criminal justice system, justice being very loose term, you know, as our greatest our largest mental health system is the prison system. And 30 to 40% of people in jails and prisons have a disability and people are thrust into poverty by the system as it exists. People get desperate. Crime is going to go up. Like that’s it’s always been orchestrated for our removal from society. And so watching in the summer of 2020 and watching these things happen, it’s not surprising. It’s it’s very draining to to watch. And I think greater conversations need to be had along the axis of race and disability and literally everything in disability. I I’ve always said that white supremacy is the goal and ableism is the toolkit. I mean, the way in which the system is designed is designed to do just this just this. And if you ignore it, you’re ignoring the toolkit people are using against you. Take it away. 

KENDALL CIESEMIER [00:20:51] Yeah, and we see that in like the eugenics movement in our country that sought to sterilize and still still does seek to sterilize Black, poor, and disabled people. 

IMANI BARBARIN [00:21:04] Yeah. 

KENDALL CIESEMIER [00:21:04] It’s definitely very prevalent and was present in our past and it is still operating as a system of violence I think today.

IMANI BARBARIN [00:21:13] 100%. And I know that and I know that with COVID people want it to be over. But knowing how the system works, knowing the racist biases in our health care system, you can know that like five years down the line, ten years down the line, the people who are going to be most impacted by COVID will have experienced racism or queerphobia or transphobia. The people who are most marginalized are going to have the hardest time five, ten years from now, from COVID. And you want to warn people against it. But at the same time, we’re like, I can’t convince you that you matter. You have to decide that yourself. 

KENDALL CIESEMIER [00:21:49] Yeah, I want to pick up on that. Like, you know, I think oftentimes it’s been interesting for me to watch, you know, operating in fairly progressive spaces and watching disability kind of really not be recognized in, you know, the long list of identities, social justice movements, categories of difference, if you will. What do you think is I mean, I have my own thoughts, but I’m just really curious that I have you in front of me. Why do you think that is Imani? Like, why are even the most progressive folks that are allies and are, you know, really have been showing up for movements that are outside of their own movements, right like, why is it still such an issue it seems?

IMANI BARBARIN [00:22:40] How do I put this? Because you have to do something. Like when people when people say, I want more Black people in the room in this conversation, I want more queer people in the room, in this conversation. By and large, all it requires is saying, I need to contact the right people. I need to make sure that I’m being intentional about the right people in the room. They can get themselves there. They can make sure that they don’t want I don’t do plan for accessibility. I don’t have to plan for logistics. We’ll just make sure that they’re there, right? Yeah. And I think with disabled people calling for inclusion of disabled people requires you do something about wanting us in the room. It’s not just a matter of inviting us to a conversation or to a training. It’s a matter of is that training accessible and safe? Is that training going to have our needs met in terms of, you know, food allocation and ramps and ASL and captions? You have to do something more than just say you want us there. You have to actually build spaces to have us there. That’s one aspect of it. I think also too historically, we’re not seen, we’re not discussed. We are hidden from society. We are in the shadows of society. And to this day we are in situations where we can’t really leave our neighborhoods or our homes. Transportation is very difficult to get. It’s not accessible, it’s not – paratransit, is not as prevalent in a lot of areas. And then you have people taking a very paternalistic view towards disabled people, where you have people are talking about disability, but they’re not talking to disabled people. They’re talking about parents and doctors and nurses, therapists, occupational therapists. Right. So it hurt if, you know, these things are interconnected. They hurt all of us. And if people don’t think about it. 

KENDALL CIESEMIER [00:24:26] Mm hmm. 

IMANI BARBARIN [00:24:27] They get to just live in the land of privilege in which everything’s just okay, you know? 

KENDALL CIESEMIER [00:24:32] Totally. You know, until disability comes for them. Because, you know, unfortunately, we’re all – I don’t think any of us are immune to experience disability in varying degrees in our life. And I sometimes wonder if that is also part of it is this like I can’t look that way because that way reminds me of my own inherent vulnerability to have a disability or to, I don’t know, die, like our own mortality, right? Like it’s so connected. And I sometimes wonder if it’s just so hard for people to have to contend with that, that we act as some as reminders of what they’re kind of like, quote unquote, worst nightmare is. And it is. And of course, I want to be really clear about this. This is only a reaction based on the structure of ableism that is so pervasive, because if we had a world that actually was accessible and was inclusive and did work for all of us, it wouldn’t be such a fear of our bodies bodying, right? Like, are the ebbing and flowing of our bodies wouldn’t be such a terrorizing experience. 

IMANI BARBARIN [00:25:45] Nondisabled people are people who think they’re nondisabled engage in a lot of very dangerous behaviors when you’re actually thinking about it to avoid seeing being seen as disabled or they promote very dangerous ideas. 

KENDALL CIESEMIER [00:25:58] I mean, there’s so much to be said there. I think especially in the age of the like wellness industrial complex, it can get really, really there’s just so much fodder for people now. I think there’s so much ability for people to really latch on to different kinds of practices or ideologies or to really take that fear and run with it. So when you are thinking about the time we’re living in? We’ve got the pandemic. We’ve got attacks on bodily autonomy from a perspective of banning gender affirming health care for trans people, attacks on our reproductive freedom. It’s like a very devastating and difficult time. And I feel like what is just so discouraging to me and I’m curious what your take is here, but I really felt like, oh, gosh, if we didn’t learn, if we’re missing all the lessons that the pandemic could potentially collectively teach us because we’re reckoning with a system that was clearly is clearly not working for any of us and that’s being missed, it really concerns me about our ability to fight all of these other fronts. And I wonder how you feel about the moment that we’re living in and our, you know, perhaps the lack of ability to really have learned anything in all of this. 

IMANI BARBARIN [00:27:25] Yeah, I do think I personally think the pandemic accelerated all of these attacks on bodily autonomy because there’s this underlying sentiment that if bad things happen to somebody medically is their fault and that goes into, you know, protecting, quote unquote, protecting children from trans ideology and protecting birthing people from their own reproductive system and making sure that they do what they’re supposed to do as people with uteruses. And I don’t think any of this would be happening at the rate that it is, like I said, without the pandemic. And we decided collectively through propaganda, through corporate propaganda, that we’re going to ignore all the lessons that we’ve learned, we’re going to ignore them. We’re going to ricochet right back to where we were. Because if we think about what happened during the pandemic, if we actually sat down and think about how every single institution failed, it didn’t just hold on by a thread, it actively failed, then we would be motivated to change things. We would be motivated to take time to think about how things could be better. And these attacks on autonomy are really nothing new for disabled people. They’re nothing new for our community. You know, there’s stripping of rights through conservatorships and guardianships and not being able to, in some states, vote because somebody deems you too disabled or too unintelligent or having the wrong type of disability for your voice to matter. And what I would have hoped is that people took a radical stance on disability inclusion and inclusion of even children, because those two things are linked the infantilization of children and their own choices that they want for their own bodies and society at large and disability, you know those things – two things are linked because you deem it as a question of intelligence or intellect rather than this is a person that has needs and desires and goals for themselves. How do we incorporate their voice into the larger question of who we are as a society? I don’t know. I feel like we could have done something and I will never not be bitter that we decided to ignore what we learned. 

KENDALL CIESEMIER [00:29:41] Mm hmm. 

IMANI BARBARIN [00:29:41] We learned so much about one another. So much. We learned so much about how we could support one another and how much of our time is wasted behind desks, you know, and not with our families. Like that was that was the biggest revelation, is that it didn’t have to be like this. None of it had to be like this. 

KENDALL CIESEMIER [00:29:59] None of it had to be like this. 

IMANI BARBARIN [00:30:01] And so I think it all plays into this larger picture of what do we want to be and who do we want to be as a society? And it requires this inclusion of us as disabled people that I don’t think people are ready to contend with. 

KENDALL CIESEMIER [00:30:14] Yeah, it’s sad. If the pandemic didn’t, you know, isn’t radicalizing people. Especially in the early days, like there was just I mean, you could say that today in society, people can feel could feel immune to the repercussions of the pandemic, that some people with a lot of privilege could feel immune to the repercussions, but not in the beginning. In the beginning, there was a level playing field, that we were all operating on the same playing field in different ways, but but it had to touch everyone. And I just can’t imagine that that didn’t help radicalize people. It’s just so upsetting. 

IMANI BARBARIN [00:30:59] Over a million people died like it was nothing. 

KENDALL CIESEMIER [00:31:01] And yet, you know, significantly less people die and other historical events and we have memorialized and actually changed entire national security strategies. And, you know, that is a whole other thing. But like, yeah, a lot of shifts, a lot of shifts have been made for far less death. 

IMANI BARBARIN [00:31:20] Yeah, it’s disheartening. I think it’s really sad. 

KENDALL CIESEMIER [00:31:24] Yeah. And I guess like with that, you know, where do you find hope or the kind of like continued persistence? How do you live with that being true and also continue to deliver? And continue to show up and continue to push us forward. I mean, I really see you as a leader. 

IMANI BARBARIN Well, thank you. 

KENDALL CIESEMIER And I think that your content is so necessary. And every time, you know, I watch something, I’m like, yeah, you tell them there’s just a lot of things that need to be said that no one has been saying and needed kind of someone bold enough to, like, actually tell the truth. And I feel so grateful for your voice. How do you keep doing it amidst just the hopeless feeling, you know? 

IMANI BARBARIN [00:32:16] Well, it’s how do I put this. I am never going to stop. And it’s almost pathological at this point that like because I’ve told people that I want to step away from advocacy a little bit, It’s very emotionally and physically draining and it’s very difficult to have the same conversations over and over and over again. And people looked at me in my anger. No, you’re not. That’s not a thing. 

KENDALL CIESEMIER [00:32:39] They just totally see right through that. Like,”That’s interesting. I’ll ask you tomorrow.”

IMANI BARBARIN [00:32:45] Right. I’m like, That’s so rude of you to, like, call me out of that. Prior to me going to grad school, I remember sitting at my desk at work and I just very intentionally said to myself, I want to tell better disabled stories. I want to tell the truth about disability. And this is like my first job. And I, I saw myself not really going anywhere with that job and kind of being stuck. And I said, I can make a job out of telling better disabled stories that matter to us and not to nondisabled people so that they feel better, like I could care less. And every single day that I am on social media or that I’m writing, or that I am putting in the work in some way, I orient myself around that. And so that’s kind of where my energy comes from, is it has to be disabled people. It’s always going to have to be disabled, even for me. And that’s where the community comes from and the energy comes from. And just commiserating with other disabled people I think is just so fun because you feel so validated in your daily experience, because being disabled, it means being gaslit every single day about what is possible versus what you’re told to settle for. The behaviors, the interactions, the supports. I’m so grateful for disabled people that they trust me and that you all trust me and that you interact with me and have conversations with me and tell me your stories and you tell me what matters to you because, like, that’s all I’ve wanted as a kid, and that’s all I wanted to talk about and to have a vocabulary to discuss. So I’m forever grateful. And that’s where it all comes from. 

KENDALL CIESEMIER [00:34:26] I guess my last question, just out of personal curiosity, really, you know, I think for people who might be listening to you, maybe they have a disability. I don’t know where they are on their journey, identity journey. But I think hearing you have such confidence and have such a presence and such conviction about your opinions and your beliefs and your experiences and what you’re doing can feel like, “Wow, I can’t imagine ever feeling that level of confidence or that level of conviction or, you know, to put my neck out there or say the thing that I feel needs to be said,” whether that’s online or in rooms or their workplace or in school or in their personal relationships. Where has that come from for you, and how have you really, like, nurtured that part of yourself because it is challenging?

IMANI BARBARIN [00:35:21] Yeah. 

KENDALL CIESEMIER [00:35:22] So for some people it comes naturally. You know, we all have God given gifts, right? Or inherent gifts. But yeah, like, how do you nurture that? 

IMANI BARBARIN [00:35:30] I come from a long line of very – how do I put this in a way that I won’t get a phone call later? Very bold Black women. Like there was never a question to remain meek or mild. You have to say what you’re going to say. And my grandmother’s like that. My mother is like that. My aunts, I’m West Indian, so my aunts are all like that, however way that manifests for them. But I think to a good way to think about it is I started advocating for other disabled people, if that makes sense. I didn’t start with Crutches and Spice. I didn’t. I started with a different blog, actually. I started writing about tips to like, interact with disabled people better and how to be nicer and not to be kinder. And then I was like, “Why am I doing this? This is crap.” Like, it felt so outside of me because I was advocating for disabled people in a way that centered non-disabled people. And I realized if I was going to advocate, I would want to advocate in such a way that disabled people felt empowered, not nondisabled people, I could care less. And the more I started doing that, the more I started realizing I’m a part of this community. And if I wouldn’t stand for this behavior, this treatment towards other disabled people, if I could see it outside of myself, then I don’t deserve that treatment myself. Like, I deserve to stand up for myself and advocate for myself as well. And that could also set an example about how disabled people should be treated. And that’s centering me in some ways was part of the advocacy. It was part of making sure people had the skill set to do the same or at least find ways in which they can manifest it in their own lives. And so sometimes we find the strength outside of ourselves because we realize that if we’re going to put ourselves on the line to advocate for other people, then we deserve a baseline of respect and inclusion ourselves. And so sometimes you have to find it outside of you. 

KENDALL CIESEMIER [00:37:26] That’s a really – I think that’s a really good piece of advice. I really, really like that. And I think that mirrors my journey as well in different ways, but very similar, like feeling more comfortable advocating for other people first before even being able to acknowledge, oh, I actually have been really impacted and this does really apply and this is really resonant. And, and I do deserve to also vocalize those things for myself. That’s cool. That’s very cool. Oh, you’re the best, Imani. I would love to just sit here and gab away all day long, but I really appreciate you joining and and sharing all this with us and helping us understand how this all is connected. 

IMANI BARBARIN [00:38:12] And thank you for having me. I greatly appreciate it. We have to stick together. 

KENDALL CIESEMIER [00:38:16] Absolutely. 

Thank you so much for listening. You can subscribe to United Bodies wherever you get your podcasts. If you enjoyed this episode, it would be so helpful to us if you would rate and review the show. That helps more people like you find us. We’ll be back next week with more. 

United Bodies is a Ms. Magazine and Ms. Studios production. The show is created and produced by me, Kendall Ciesemier. Michele Goodwin is our Executive Producer.