Channel Kindness Radio: Disability Rights With Imani Barbarin

August 12, 2020

By Milo Parker

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Imani Barbarin is a beacon of validation on my Twitter feed. I was so delighted to talk to her for Channel Kindness Radio about disability and living with different marginalized identities. From her story of how she got to be on Twitter in the first place to her “loud mouth on disability,” Imani shares unique insight on the disabled experience for all to hear and understand. This episode of Channel Kindness Radio is an invitation to sit back, laugh hard, and learn intentionally.

Announcer: You’re listening to Channel Kindness Radio

Taylor: Hello, and welcome to Channel Kindness radio. My name is Taylor, my pronouns are they/them/theirs and I’m a program associate at Born This Way Foundation. I’m so excited today to be joined by Imani Barbarin also known as Crutches and Spice. I like to have my guests introduce themselves to establish who and how they are in this moment. So tell me, who is Imani Barbarin today?

Imani: Hello everyone! Like Taylor said, my name is Imani Barbarin. I go by She/Her/Hers pronouns, and I am a blogger, disability rights activist, and communications director. I love being sassy about disability rights. I’m not going to silence myself on it. So that’s how people know me. So I’m a loud mouth for disability.

Taylor: I love that. That is so fun and I want to start using that to describe myself. I hope you don’t mind if I borrow that for a while.

Imani: Do so! Yeah, absolutely!

Taylor: Yeah! So I am so glad I found you on Twitter and Tik Tok. Not only are you wildly funny, but you just give such a much-needed voice to our community, the disabled community, and I felt so seen in your posts. So personally, I just wanted to thank you for that right off the bat.

Imani: You know, I appreciate you saying that.

Taylor: Of course! Now, I know every story about chronic illness and disability is full of twists and turns. But can you briefly share your journey to this moment through the lens of disability with us?

Imani: Oh, sure! So I was born in 1990, about five months before the Americans with Disabilities Act was- no four months before the Americans with Disabilities Act was signed. And I was not moving as a baby, and my mother was trying to take me from doctor to doctor and she’s a Black woman, so nobody believed her. So I was diagnosed at around two years old. I had my first surgery at four, four or five, and then I just kind of kept my head down for most of my life and was like, listen, you just have to get through it. You know, I was raised to be Black first, disabled second in a lot of ways. And it wasn’t really until I got to college where I said to myself, no, there are some real big barriers to you interacting with society, because my mother had been my protector for most of my life. And so I really had to confront those things myself, because, you know, now I’m 18, and I need to advocate for myself and my, my college won’t really care if my mom calls them up and says, “You need to do a, b and c,” I have to do that myself. And so during those years, it was really, really difficult. And then after college, I started writing more and more about my disability for my blog, crutchesandspice.com. And then I really, the only reason I started using Twitter was to promote it. It actually was two-fold. I got into a very tumultuous breakup with a group of friends who said that I was just an angry black woman and that they would find another person named Imani like me in order to get somebody nicer, and so, I said to them Imani is an ethnic name so that’s probably not true. And then I just went on Twitter and followed every single person named Imani. So that’s how that started. And then with my exact spelling too, so after that, I just kind of interacted with that because like I said, all the Imani that I were following are Black women and Black friends. They were all really engaged in social justice and equality and I was like, I could do this for disability. And so that’s how all that started.

Taylor: That is so funny. I love that story so much, and I love how it like so clearly shows not only like, your intention and your wit but also just like how quick you can be to make sure that like the narrative is still enforced, and like you can still retain like your power in those moments. I love that. Thank you for sharing those stories. That’s really, really fun and I’ll be thinking about that for the rest of my life. 

Imani: *laughs*

Taylor: So you – you lead us right into my next question perfectly. And so identity is a huge thing in the disability and chronic illness circle. So for you, what role does disability play in your identity, if any? And then contrarily, how do your other identities impact how you live with your disability?

Imani: Yeah, so I think I’ll start with like, how my other identities kind of impact because I really, truly was raised to be Black first and disabled second. And I was told that, you know, anytime I brought up disability issues in the lens of blackness, I was totally to pick one. Or that we don’t claim that you know, we don’t claim what people think about us, because disability is usually seen as an insult or disability is seen as another marginalization in which people can discriminate against you for. So I truly was told, you know, you’re gonna have to get through and get by regardless because even the services that are for disabled people, they’re not really for you. They’re for those white disabled kids, they go normally to white disabled kids, and that’s just not true. And I think that, in terms of identity, it was really powerful for me to claim the word disability and disabled because I was, I was telling people that I didn’t have to choose. I could be disabled and Black. I could be a disabled Black woman and that, I mean, well, there’s actually a funny story behind this. So I got my first tattoo at 18. And my dad said, you know, “Nobody will hire you. You know, if you have tattoos and all that,” and I said to my Dad, “I’m a disabled Black woman, if they’re not gonna hire me, they’re not gonna hire me.The tattoos won’t do much one way or the other.” And I think that that’s kind of like the instinct about identity is that you want to choose the identities that make it a little bit easier for you to move about through life and our bodies and our identities choose us, we don’t choose them quite often. And so claiming them for yourself can be powerful in terms of finding a community, and then finding a way to express yourself. And so, it’s really important to me that people don’t try to make me choose one or the other. 

Taylor: Yeah! Have you noticed from your experiences, any discrimination for medical treatment based on your other identities. Whether that is for being a woman or being a Black woman or any other identities that you may hold? 

Imani: Oh yeah. I mean, it’s funny because whenever you experience discrimination at multiple intersectionalities, you really can’t tell which one it’s coming from in the moment but afterwards, you can kind of break it down. You know, there have been times that I’ve been in the doctor’s office, and I always bring somebody with me simply because like, if you ever get bad news in the doctor’s office, your brain will just tune out and be like, “I’ve heard this horrible news. I don’t know what’s going on beyond this moment.” So I always bring my mother or my father, or a friend with me to the doctor’s office and several times my doctors didn’t even talk to me, they would talk to my mom. And I’m like, No. I’m right here, like, give me the paperwork. I’m the one that keeps it. She’ll give it to me as soon as you leave. Going into the doctor’s office as a teenager, my parents would be in the room with me, and the doctor would be like, “Is your father abusing you? He’s, he’s, he’s domineering. He’s right there.” And I’m like, “No. He’s here because I’m his daughter.”

Taylor: Right.

Imani: Yeah. And they would, you know, in terms of that, they’d be like, “No, your father has to leave the room right now because we don’t know.” And, you know, to be fair, like, that’s a practice that they do quite widely, but the amount of times the exact same doctor was doing it was ridiculous. Um, there have been times where, you know, just getting services or even applying for disability, like, it was difficult all the way around. And so my mom gave up on applying for disability when I was like four or five and we just kind of toughed it through for most of my life, so yeah. In every single aspect, yes.

Taylor: Yeah. Thank you for speaking on that. I know many of my friends who live as disabled Black women have experienced wild amounts of horrendous discrimination and pain from medical professionals. And I can’t imagine that your experience has been much different from that. So, thank you for sharing that. For all of the listeners, whether they’ve been through that or not, I know that that’s something impactful to be thinking about long term.

Imani: Yeah, I mean, even just my story. Even when I was in the womb, there was discrimination. You know, nobody believed my mom about what was going on when she was pregnant with me. Nobody believed my mom when she was trying to get me diagnosed. It was just, I mean, there’s discrimination against Black people from the moment of conception, and that’s my story as well.

Taylor: Thank you for sharing that and for your vulnerability in this moment. I personally really appreciate it. And I’m really, really glad that we get to share your story and your narrative with our listeners. But leading into the next part of our conversation on the intersections of disability, let’s talk about the intersections of living as a disabled person and the impact that has on your mental health. What would you say have been the biggest connections between the two for you?

Imani: I mean, right as I was starting to do some of this advocacy, I read a study about the comorbidities of physical disability and diagnoses like depression and anxiety. And I thought that was a weird framing because mental health illnesses are disabilities as well. So there’s that you know, there’s like, we’re not competing against each other, it’s not simply because you have one or anyways, but I, I’ve struggled with mental health for a majority of my life, and I didn’t really have a name for it. And I remember talking to my dad once and I think we were like in the kitchen, and he goes, he’s like, “You just feel anxious all the time.” I was like, “Yeah.” And he’s like, “Do you know why?” I’m like, “I have no clue.” And my dad was like, “Yeah, I’ve felt that my entire life too, you know, we’re just anxious people.” And I know it stems now from you know, inaccessibility, being in a Black skin and being a woman, being disabled, like all those things, compound my anxiety and then also my depression, which I have – I also lived with depression and so, I think, in terms of my identity, I don’t really often talk very often about my mental health or my mental illnesses, because I feel like as somebody with a physical disability, you go with the one that restricts you from navigating in society on a daily basis, not the ones that people can’t quite see. Yeah, which is not right but how it is a lot of the time.

Taylor: For sure. I know for me, living life as a person with disabilities are invisible most of the time except for, you know, in extreme weather and different circumstances where my body just won’t cooperate. I find that it’s very cyclical, that if I am having, you know, a bad physical health day, that translates into my brain. And then I have a bad Mental Health Day. And then the next day, you know, it carries over a little bit and my brain’s still not in the right space. And so then I start taking on the physical manifestations of anxiety and it can be very, very cyclical until I can find the right way out. Have you found any ways to pull yourself out of those cycles?

Imani: You know, it’s very strange, like I have had periods where my body’s like, “No, we’re moving,” and I’ll just like start moving regardless. And, you know, with my particular disability, I have cerebral palsy. You know, one of the symptoms of depression is being sedentary and kind of lying down all the time and not wanting to get out of bed. But it’s pretty difficult for me because my legs, they atrophy really quickly if I don’t move around and then my muscles will tighten really badly and it gets painful. And then I, you know, growing up I didn’t really realize that the reason I’m lying in bed so often is because my depression and then trying to get up out of bed and then not being able to walk properly or walk as I normally do because my legs are tired. I think that, you know, I try to say yes to a lot of things even if I don’t necessarily want to simply because I want to get out of my house or go around (and you know, during the pandemic, it’s been very hard because, you know, I’m higher risk so that’s off-limits regardless.) So yeah, I try to move around a little bit. I try to say yes to things. I try to make friends who will understand those mental health illnesses and also my physical disability so that we can hang out and walk around and do different activities but it’s been very difficult to find a way to snap out of it. Because when you’re in it, usually when you recognize that you’re in it, it’s so far deep that it’s really hard to pull yourself out of it.

Taylor: Yeah, and I love that you brought in the idea of bringing in other people to the moment. So like for me, I deal with many things. But among the two are arthritis from the waist down, and EDS or Ehlers-Danlos Syndrome. And so basically that means when it’s wintertime and it’s cold, all my muscles tighten up and freeze, it’s very hard for me to move my legs. And then the summer, when my muscles are very relaxed, I sub flex and dislocate everything. And so now I want to go walking around because it’s important for us, to you know, get up and move to help treat our mental health. But I also know that I have many physical limitations and so making sure that you have people in your circle that can understand that the two exist at the same time is so important. Because you don’t want someone around who’s going to be like “No, like, you know, you need to get up, you need to walk around, let’s go do something! Let’s go play a game!” when like, you know that your body will give out if you do that. But you also don’t want someone who’s like, “Oh, you know, maybe you should just lay down and not move again for a while and just relax.” And it’s hard to help you know, people find where the two live together in the moment, but I think once you get to that area with someone, they become a really, really crucial resource. And not only helping you live your daily life, but also becoming more of a trusted companion in that moment, because it’s someone who can start to understand you at a deeper level than the surface.

Imani: Yeah, you know, because of my work, a lot of my friends now are disabled after that whole blow-up with my friend group in a group chat, (which is why I hate group chats,) anyways, I digress. You know, my boyfriend is disabled as well, he has the same disability I have and so we have a lot of the same issues. And then a lot of my other friends also have diagnoses. And I think that, you know, especially with Black disabled people, this has been a really crucial time because I feel really hopeful that a lot more Black disabled people will identify as disabled. And so, therefore, we can come together and kind of understand one another, and not push ourselves outside of our limits, and really just kind of create community with one another. And so, a lot of my friends are Black and disabled, and they kind of also are like, “Yeah, you need to sit down for now.” Like, they don’t try to overextend me or they recognize that I’m overextending myself, and they take care to notify me when that’s happening.

Taylor: Yeah, and that’s so important. I’m so glad that you have that within your circle as a resource, as a source of comfort, as everything that you may need it to be in those moments. But that also leads us perfectly into the next section as well. So thank you for creating all the segways for me. A lot of able-bodied people are genuinely curious about disability. And they have questions but many of them don’t want to be rude or say something that they don’t mean if they don’t understand the context around what they’re asking or saying. Would you say there is a right or wrong way to do this? And if so, how should an able-bodied person go about this with language, compassion, intentionality, whatever else you see?

Imani: Right, so I guess my first thing would be to say to nondisabled people, you know, do your research first. Like, don’t demand emotional labor from people because we do deal, especially in the social media space, we do deal with a lot of concern trolls, who will kind of divert an entire conversation around what they “want to know,” even when they don’t really have any intention on learning anything. So do the research ahead of time. Follow disabled people. Follow especially disabled people who are at the intersections of race, gender queerness, because those who are further marginalized within the disability community have different perspectives that can lend itself to the overall conversation on disability. I would say read the Disability Visibility book that just came out that was edited by Alice Wong. I just got it. I’m VERY excited about it! Read that. Read Alice Wong’s Disability Visibility website as well. There are so many diverse perspectives. There’s Rooted in Rights. There are individuals like Vilissa Thompson and Tinu and Black Disability Collective and Dustin Gibson and Talia Lewis. Those are all people that are extremely well versed in what they’re talking about, and speak to different issues that affect the disability community as well as issues that the disability community may not even know about themselves. Yeah, and so just make sure that you’re not demanding emotional labor from somebody who has very little of it to give. And make sure that you’re doing the homework prior to approaching an individual with your questions, and have your questions well-formed ahead of time, and that reflects your research because I guarantee you that there are some things that you can answer for yourself once you do the work.

Taylor: For sure. And also just adding on to that, I would encourage everyone to err on the side of compassion before over encouragement because I see so many people that don’t live with disabilities or know anyone in their circle that lives with disability or chronic illness look for those stories that are like “disabled man runs marathon,” and they’re like, “Ah, this is incredible! You should do that because you have a disability!” and you know, as exciting as the stories may be, as happy as I might be for that person, that’s just not my life and my, you know, my worth as a disabled person isn’t based on how well I can perform to able-bodied standards. And so like encouragement and compliments there, while they may be well-intentioned, they don’t do a whole lot for me.

Imani: Yeah and you know, what’s funny is that we always, I mean, slowflake is kind of used as an insult but we treat diversity as like, “Everybody’s a unique snowflake, and they fall to the earth in their own unique way.” But then when we see one disabled person doing one thing, we’re like, We could apply this to all disabled people!” right?! And they’re like, “No, that makes no sense!” 

Taylor: Yeah!

Imani: We’re all different and the thing that works for one person will not work for another person. And toxic positivity is an extremely detrimental thing that happens to the disability community, especially when we pit disabled people against each other. So I agree with you wholeheartedly, Taylor.

Taylor: For sure. And I also just before we started this, watched your Tik Tok where the person was like, “I want to celebrate you! You are specially-abled!” And you were just like, “You know, you can say disabled…” – “You have interesting new abilities that are different from mine!” And so, you know, while people may be uncomfortable with the word disabled, I still also encourage them to use that and think about why they have any discomfort with it in the first place.

Imani: Oh, yeah, I’m actively excited when somebody gets uncomfortable with saying the word disabled cause I’m like, “Why are you uncomfortable?”

Taylor: Right! Let’s unpack this.

Imani: Do you maybe think that society prefers your body type over mine? And that society actively disables me in many ways?

Taylor: Right!

Imani: Are you saying you fundamentally recognize your privilege over me? Is that why you’re upset?

Taylor: Right! Are you uncomfortable with the word because in your mind, disabled means bad and not working properly and you don’t want me to know that you see me as bad?

Imani: Exactly. I love when they get all squirmish.

Taylor: Of course. There are so many different layers to it. And, you know, while it is fun for me, it’s also just a really great teaching moment. Because it renders people humble before they even realize it.

Imani: Yeah, and I think that there’s also a certain level of pride in not saying it for some reason. You’re like, “Oh, well, I’ve come up with a greater solution.” We’ve been through all those different euphemisms and words and you know, little catchphrases about disability that skirt around disability. But if you actually see the word disabled, you at a certain point will have to confront your bias against disabled people. And a lot of people are not prepared to do that, which is why they come up with the euphemisms in the first place. I do love the word disabled.

Taylor: Well I’m glad we shared that in common.

Imani: *laughs*

Taylor: Now as we’re wrapping up, can you share with us any resources you would recommend to our listeners, able-bodied or disabled?

Imani: Yes! Absolutely. Okay, so I mentioned two of them before, Rooted in Rights does a really, really good job with their blog. It is edited by Emily Ladau, a close friend of mine, love her dearly. But they really do focus on different perspectives about disability that are extremely important to overall disability discourse. They also do really good work in terms of, you kind of figure out how to make your own content accessible. And so making sure that you look at how you’re interacting in digital spaces, and how you make it accessible as well. That’s extremely important. Disability Visibility is extremely good as well in terms of making sure that we create our own media, we have the power to create our own media, and that we are recognizing different voices in the movement. There’s also Dustin Gibson, who writes a lot of really good op-eds on disability and prison, and disability in incarceration, as well as Talia Lewis, they partner up a lot of the time, in the ways in which they write about disability in the “justice system.” I love by Vilissa Thompson, has Ramp Your Voice does an extremely good job with that. If you notice, I’m recognizing mostly Black people, so very excited about that. There’s also Tinu, who really kind of catalogs all of the hashtags and disability movements that are online. So if you don’t know where a conversation is going on disability or if you want to kind of tap into a conversation on disability, Tinu has all of the hashtags that are created that are facing the disability community. I think that that’s great. Also, make sure that you look up your local protection advocacy agency. They are the federally mandated organizations state by state, to protect the rights of disabled people across the country. And they are extremely, extremely vital during this pandemic. Several of them have sued about medical rationing over the last few months and the crisis standards of care. So pay attention to the work they’re doing, donate to the work they’re doing. Full disclosure, I work for the one in Pennsylvania. So I’m a little biased, but they do excellent, excellent work. And yeah, those are some of the resources. They have great – All of these organizations of people do great work. Another one is @mattbc, Matthew Cortland, who’s been kind of breaking down every single thing that’s been going on since the pandemic started, every single piece of legislation. My favorite aspect to Matthew Courtland’s work is that he got his law degree out of spite for his hatred of Medicaid, um, which I’m like, I love it! I love it so much. So he’s a really good resource as well. Do not demand emotional labor from any of these people. They put out their work already. Read the existing work. If you have questions, only once you read their work, and you still have questions, then do I encourage you to approach them. But do the homework first.

Taylor: I am so excited to look up those resources that I’m not already familiar with. You speak so highly of these people and of this work and I just know that I will feel better once I take in more of it. So thank you for sharing all that. And where can people find you and your work and support you online?

Imani: Oh sure. You’ll find me eventually.

Taylor: *laughs*

Imani: You can find my blog at crutchesandspice.com. I am @Imani_Barbarin on Twitter and I’m @crutches_and_spice on Instagram. I also have a Tik Tok. I don’t quite remember what my username is but there’s a picture of me and I look really hot in it. So you’ll find me. (USERNAME IS @crutches_and_spice)

Taylor: Great. I can’t wait for all of our listeners to see that picture of you. That’ll be wonderful. And then finally, I like to end my conversations for Channel kindness radio with a moment of gratitude. I think it’s really important to end these hard, sometimes vulnerable conversations with a moment of meditation and reflection. So if you are down for that, let’s take some time to share what we’re grateful for right now. I’ll give you a moment to think. For me, I am grateful for lazy Sundays. I have not done a whole lot today and that feels wonderful. I loved that I just got to wake up and stay in bed for a while and get up, do some cleaning. I made banana pancakes. It was great. So I am very grateful for lazy Sundays.

Imani: Yeah! You know in this moment- today, we’re taping on the day of the 30th Anniversary of the Americans with Disabilities Act and I really struggled with how to celebrate this legislation during a time in which everything feels like it’s going to crap for disabled people. And so when I reflected on one, I was like, I don’t really have to celebrate this country or that law all that much. I can celebrate the disability community that both led to it and are continuing to advocate for one another. And so I give all of my joy, all of my energy to that community today, because they’re really the ones that saved mine and so many other people’s lives. And so, I’m grateful for the disability community. I’m grateful for the ways in which we continue to fight even though we really shouldn’t have to. I’m grateful for the ways we collaborate and contribute to one another’s lives. So that’s what I’m grateful for today.

Taylor: I love that so much. Thank you for sharing that, Imani. And thank you for joining me in this conversation today, truly. It has been a blast for me and I already know so many people will also feel seen just hearing your voice in this, so thank you. And to all of our listeners, thank you for tuning in. For more stories about kindness and bravery go to channelkindness.org.

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