The Black Pain Podcast

The Black Pain Podcast

Amira Mahamud: Welcome to the Black Pain Podcast. This podcast is part of the Enabling Accessible Healthcare Delivery Project—an Open Educational Resource to help healthcare providers offer better care for the disabled community. Here, we will have the  opportunity to hear the personal stories of pain and illness related to racism. We’ll also hear from people who regularly witness black pain through their professional work. Acknowledging Black pain is important across disciplines, so this podcast will illuminate how pain can be a site for anti-Black racism and saneism. We are focusing on the intersectionality of healthcare experiences amongst the Black and disabled community.

 

Part One: Introduction 

Amira Mahamud: Talking about pain isn't easy because it shows up in many different ways throughout our life. Its deeply personal nature makes it even more challenging to address. In this podcast, we speak with Black folks from various backgrounds who share how they live with their pain, make sense of it, and identify it as Black pain. Let's hear from Lisa Ndejuru, a therapist and coach supporting Black mental health, helping people come to terms with their pain and live beyond it. 

Lisa Ndejuru: Suffering being something that impacts us but that we don't necessarily know the origin of like, we don't necessarily know what it is. It just hurts and that pain is when you have a word for it. when you can name it and you can sort of understand it better, then that would be pain.

Amira Mahamud: Let's hear from David Meyers, a Black, disabled cis-man who works in the nonprofit sector doing disability advocacy and resource support. He talks about how he deals with pain in his everyday life. 

David Meyers: But, you know, I live with pain every day. I'm a chronic pain manager. I manage my pain on a day to day basis, and pretty much 24/7 except when I'm sleeping. I'm conscious, I'm in some kind of low, low level, uh huh, a pain where i i go from being unconscious of it, because, you know, you can block out perception of pain….3:26 I find myself often blocking up my signals, uh huh. Until, you know, after an event, I tune into my body, and I realized my body's been telling me for a while. You know, hey, yeah, you tension Get out. Hey, rest, etc, so that's unconscious. And then I'm also often very conscious of pain, because I use a number of strategies and tools to help me with managing on a day to day basis. So I'm often aware of things I can be doing, want to do, should be doing to kind of get through the day with less less pain discomfort.

Amira Mahamud: Incorporating discussions of Blackness into disability conversations is crucial for an intersectional understanding of the overlapping oppressions and violence that people with disabilities face. By recognizing and addressing the unique experiences of Black individuals with disabilities, we can better grasp the multifaceted nature of their struggles and work towards more inclusive and equitable solutions for all. Once again, Lisa Ndejuru and David Meyers.

Lisa Ndejuru: when we're talking about blackness, and disability there are a lot of ways in which the world is sort of not built with me in mind, not at all or included, and we still are fighting to be included. Yeah, it's a very like, I think that in disability studies was the first time that I found the kind of literature that spoke to the dehumanization of, you know…fade in/out with David. 

David Meyers: A lot of the people I work with. You know, our agencies run by people with disabilities, for people with disabilities, so most of the people on staff have a visible and invisible disability themselves. And so for some of us, pain is a symptom of managing a disability of some kind. …(5:20) for example, as I talk to you. I've been sitting for a while, so you know, this side of my my back is telling me I need to get up and walk…I mean, it's getting tight down here. It means I need to move around because I've been sitting for quite a while. so I'm often conscious of my signals that you know I need. I can do certain things to alleviate. Alleviate the my situation….Yeah, I mean, some of my, some of my pain is mental health. My pain is around I manage an anxiety condition. So and anxious since I was a child and so it's part of my mental health condition, you know. And this is about again, you know, growing up as an immigrant in a predominantly black society, I grew up in Trinidad, Trinidad West, indies, so an island population and so right, when I grew up, you know, boys and men were socialized to be strong, not to show pain. And you were meant to either hold on to it stoically, and and deal with it. or lash out at whoever is causing you the pain in a way that's you know, kind of. I'm gonna take care of the ship myself. So macho or kind of, you know. Take action but not really. I'm just acknowledging it. You have a need for some kind of relief, because you're feeling pain. So I I grew up kind of holding on to my pain as a kid, and carrying it. And not really my psychological pain in in this case. Right? Carrying it, but not really disclosing it. So I tended to. you know, put on a face a smiling face, or a a pleasant face at times to kind of have this facade.But that was okay. So because, you know, I I didn't feel okay. But I thought this was a way to cope as a child growing up. Because, of course again, you know boys was supposed to be tough, and you know. 

Part Two: Black pain is multifaceted 

Lisa Cooper: As a black, pain permeates so much of my life. It's present everywhere. It's in my body. It's out of my body.

Amira Mahamud: The clip we just heard is from Lisa Cooper, an Afro+Goth Poet, multimedia artist, activist, and educator of the Jamaican diaspora. Pain touches different areas of our lives both physically and emotionally. It is essential to keep in mind how multiple forms of oppression such as racism and ableism facilitate pain. In this next part, we will hear more about the many faces of pain. Here’s more from Lisa Cooper.

Lisa Cooper: Are we talking about chronic pain? Are we talking about grief? Are we talking about, like, ancestral pain? I think that black pain is multifaceted, particularly, if you are at multiple intersections of oppression, like, are you queer and trans? Are you, you know, visibly, quote, unquote, visibly disabled, you know. Are you a child of an immigrant, right? 

Amira Mahamud: How we experience pain varies. From physical pain to grief, or chronic pain, or pain in the workplace. Lisa Ndejuru talks about how sometimes we don’t know we’re in pain at all and when it is experienced repeatedly, the way we absorb it and respond to it changes.

Lisa Ndejuru: I worked a lot with sort of trauma in many communities I think that and we're generalizing like, there's a lot of there's a lot of People are used to pain. There's a lot of familiarity with pain and violence, and so There's a lot of resistance to it, resistance as in not not not wanting it, but like capacity of bearing it. And that comes sometimes with the incapacity of recognizing it. 

Amira Mahamud: Have you ever stopped to think that pain can manifest itself in peculiar ways? Take imposter syndrome, for example. Because Black people are often held to higher standards than their white colleagues, they experience intense pressure to avoid making mistakes. This unremitting pressure to deliver excellence places a much higher level of stress on us and can result in imposter syndrome, which is the feeling that we don’t deserve our success or that we don’t belong in the positions we hold. Tamika, who is currently the Director of Innovation and Quality Assurance at Power Canada, has a background in Behavioural Science and Technology and a degree in Disability Studies. She has a lot to say about imposter syndrome and pain.

Tamika Walker: I guess my own impostor syndrome is driven just because of the racism that I've had over different workplaces I've been in. I find myself now triple checking emails or feeling like I have to work extra harder than my counterparts just because of what I've endured over the years…Yeah, I will definitely, especially when you know, you're working so hard, and you're being constantly put down or not accepted? Because of your skin colour? Or because of where you come from and stuff. Yeah, I definitely experienced grief. And others you've seen work just as hard as you or push even harder to exceed expectations. And they are feeling the same way you feel..”

Amira Mahamud: As you can see, there are different layers through which pain manifests itself in our life. Sydney Elaine Butler is the founder of an organization called Accessible Creates, an HR & DEIA Consultant Group. Let's hear Sydney and David briefly touch on the impact of chronic pain on mental health and how intersections of identities affect our perception of Black pain. 

Sydney Elaine Butler: If from a black perspective that you know, if you're dealing with both chronic pain, both physically and mentally, or just what you know, and really understanding the impact that chronic pain can have on your mental health and and your Psyche. And so really understanding more of that connection. And I think also about the like, the more the intersectional identity pieces of okay queerness, or you know,having you know how, being more educated versus not being, you know. And what these different barriers look like to different individuals and different social standings and classes, and all these different intersectional identities that are often not fully understood, and what that actually looks like in the context of a person that's dealing with chronic pain.

David Meyers: I was not great at asserting what I needed. Sometimes I wasn't aware of what I needed that, too.But I often felt that As I got older I felt that as somebody who presented with pain. Had to work hard, to actually get across that. You know, I really, this, this pain is real for me. And I I need some. Really, maybe I need a pain medication every day to actually sustain going to work and having a full life right? Whereas I thought, maybe doctor's gonna ask those questions themselves. How is your pain? Are you in pain? Kind of thing? So I felt I wasn't always sure whether or not the fact that there was a black man that was part of it. But I felt that I didn't always feel seen. See as a human being showing up. And my practitioner looks at me and ask me questions around what my experience is and what that's like. And how does that impact my functionality and my ability to move around and work? etc?I had to do that myself more. I found and Felt like you were neglected. Try something.I found that too much of the burden of of being treated for my needs was on on me to communicate to the position.They need it. And I thought that really I didn't know whether that had to do with me being Black necessarily, because a lot of this stuff to me would was sort of indirect. It was rarely done in a very direct sort of way. Or a sort of you know, kind of how should I say? Critical way. Like that. It was more of a subtle kind of thing where I had to think about. Well How much more should I tell my physician about this before he does something about So I had to become more self assertive. I'm a great doctor now who I don't have to worry about. I just show up, and we talk candidly about what I need. And it was always that that way for me over the years. (have to compare to video/audio recording to complete sentences). 

Amira Mahamud: When we think about pain and unequal healthcare outcomes, discussion of anti-Black racism becomes more urgent. Black people often experience neglect and violence when navigating the healthcare system. Making clear the intersections between ableism, saneism, and racism helps us understand how and why Black people are often under-served by the healthcare system. There is a long history of medical racism in Western medicine originating with colonialism and the transatlantic slave trade. Scientific racism was established in slavery and carried into medicine and education. Its aim was to establish a hierarchy between races and falsely proclaim the superiority of white people. Black bodies were seen as subhuman and therefore incapable of experiencing pain. The long-term effects of these assumptions have resulted in systemic discrimination in the medical industry and continue to inform medical education and professional practices. Research into anti-Black racism in medicine has shown that racist assumptions among healthcare providers contributes to Black patients having significantly less access to pain treatments and often receiving lower doses of pain relief medications. A study published in the  Proceedings of the National Academies of Science collected data from 222 white laypersons, students and residents. Part of the study required participants to review two mock medical cases involving a Black patient and a white patient. Participants were asked to rate their pain and provide treatment recommendations. About 50% of the participants endorsed at least one false belief about biological differences (Hoffman et al. 2016). One of the false beliefs suggested was that “Black people’s skin is thicker than white people’s.” Racist assumptions can affect face-to face interactions between healthcare providers and patients, but they can also impact policy making. Let’s listen to Tamika and Lisa Cooper talk about their experience navigating the healthcare system.

Tamika Walker:I think from when it comes to the health, my experience, at least, is that I'm still on the hunt to find a doctor that is like me. I've there's there's a little there's not that many black doctors from where I live, at least in close proximity, at least that I can go to, that can relate and give me and actually sit down and get to know my my pain. Now when you go to the doctors, it's like it almost feels like it's either dismissed because of my skin color, because we all know the the notion is the black woman is strong. You don't have pain. You don't go through pain. So I find that that's sometimes what I experience, or it's dismissed like you're fine, it's okay or book another day, it's not. I don't feel like I always get approached with care and in the doctor's office, to the point where sometimes you feel like you don't even want to go, and that could result into other bigger issues, but that experience you feel in the doctor's office can sometimes deter you from going, especially when there's not a lot. And I come from a Caribbean background I don't need. I couldn't even tell you the last time I met a doctor that was anything about me, my if you ask my doctor, probably tomorrow, they probably won't even know anything about me.

Lisa Cooper: I think it is important to acknowledge that, like, health care and social care are linked to black pain because of the experiences black people have within these systems. And you know, I've experienced firsthand like the neglect, like these systems are full of neglect and anti blackness and gatekeeping and systemic barriers and all of this can, you know, further isolate and exacerbate pain rather than heal it or help it, and also this, like resiliency agenda against, like, black women, right? Like, independent, strong, you know, and, yeah, like, also taking care of everyone but themselves. So it's hard to go to a doctor, it's hard to go to a health clinic. It's hard to, you know, be taking your supplements and drinking your teas, right? And you know, like having more anxiety than anger, because an angry body is a violent body, like an angry black body is a violent body to like whiteness…I'm firmly placed in this stance of instead of focusing on strength and resilience, we need to focus on softness and vulnerability, particularly the vulnerability of the black body.

Tamika Walker: Yeah. I think for me, I do a lot of work in the mental health the Mad community, and I think I always talk about disability and and madness and so forth. I definitely think that it's it's hard, it's really hard for the Mad community right now when it comes to medical care, just from the lack of therapists, psychologists, the process. It's it's not, it's also not a it's not a trusted approach, like and that's one thing that's very, very important in marginalized communities, is that they trust they have to trust you. And I think that, because of the health care system being so not trustworthy now, right now, we're gonna the Mac community those who have disability is facing challenges, especially accessing care that they trust.

Amira Mahamud: Witnessing other people experiencing pain can also be very difficult. We asked Black healthcare professionals what it's like to witness other people in pain. Let’s hear from Nadia, a registered nurse in an amputee unit and an advocate for diabetes education.

Nadia: One of my cousins developed type one diabetes, the insulin dependent diabetes, in his very young days. And I noticed that as he continued to grow, by the time he got to adolescent young adults, he got, I would say, maybe frustration and maybe some lack of support. And his self care management was not the best, and he ended up at a very young age with the complications of diabetes, which is renal failure. So just to be able to to provide that, that support and unnecessary education for young people is what I'm passionate about…Early in my nursing career, I learned to appreciate that pain is subjective. Initially, it was a kind of a difficult thing to come to grasp with, because we do know that there are signs and symptoms, um, physically associated with pain, but I learned to appreciate the fact that pain is predominantly what the client says he or she is appreciate is experiencing sorry. Um, therefore when I see people in pain, I try to be empathetic and respond how I would like to be treated if the rules were reversed, and try my best to relieve that pain within my scope of practice, and that would include things like simply attentive listening, strategies like distraction and, of course, administering medication. I wish I could take the pain away. But that's not always possible. And I have to accept that and not be too hard on myself when it's beyond my control.

Amira Mahamud: For these healthcare professionals, being in touch with the pain of others is a difficult task. This is what Peter, a personal support worker who has served the community for the past eight years, both in institutions and community-based care settings, shares with us. His passion is knowing that every day his delivery of care makes a meaningful impact on the lives of his clients. He even tells us how difficult it was for him as a professional during the COVID-19 pandemic.

Peter Emilike: Well, it's never an easy thing, and I can tell you that contrary to what the perception is, you know, people think that PSWs nurses, they don't care about their clients or residents when they're in pain and nothing could be further from the truth. These are people that you spend I would dare to say, some of us spend more time working with our clients and our residents than we do at home. So these are people that you build a relationship with. You know their birthdays, you know their family and friends. You You know you've been, you've been engrafted into a small part of their life. And you know, we're human beings, so when they hurt, ultimately we hurt. And you know, one of the toughest things is, you know, during the pandemic, we've lost a few clients where I'm at, and, you know, it was devastating. It was devastating for us as a whole. And you know, we took pride in the fact, though, that despite their pain, you know, we did the best we can to try and alleviate that pain. And you know, and by providing them with the best possible care that we, you know, we can.

Amira Mahamud: How do you respond to someone in pain? Can you think of a simple answer? Lisa Cooper addresses the complexity of being a witness to pain.

Lisa Cooper: So, like, you know, I think it's such a crazy question, like a an interesting question, because my first response is, you know, when you're witnessing pain, like life goes on, and not that, I'm numb to my pain, and you know, other people's pain. But, you know, I feel like, when it comes to witnessing pain in my work or in my life, like, you know, what pain are we talking about? ….Like, there's lots of ways that pain can be and experienced. You know, rejection, self hatred, guilt, I think all these things are very sadly normal experiences of black life, and these bring about black pain so many. For many of us, it's not as simple as like and I just said that like life goes on, it's not as simple as life goes on, but maybe it's life continues, and amidst these black pains, we have to hold onto our gentleness and allow ourselves to really ourselves like a with a capital ourselves as black people, whatever that looks like. Because, you know, black pain is life for black people like it is, like embedded in the fabric of daily life. But even with that, there has to be a space to be vulnerable and soft and to acknowledge that pain and witness that pain in ourselves and others, without this expectation of strength and resilience that black people, um, particularly black women and femme deal with on a daily I don't remember where I heard this quote from, but it's like life doesn't have to be defined by how well we endure. And I've always loved that. And so that's kind of my thoughts on witnessing pain. 

Amira Mahamud: It can be challenging to know how to respond to pain, especially when it’s familiar. Let's listen to both Lisa Ndejuru and Denise exchange ideas on this topic.

Lisa Ndejeru: I think there's a lot of you know, there's a lot of ways people respond, people cope with with pain in different ways, right? Yeah, more or less helpful ways. People get stuck in those ways, and those ways create other problems. Again, like, I'm thinking about, you know, sometimes you're not depressed, you're broke, right? Like the and that really speaks to those sort of lack of access, you know? And then we're not talking about like, it's not a, it's not a neurosis, you know, it's like, it's not, it's not in your head. It's not like, yes, you can have a you can have. Sometimes you feel stronger and less powerless, let's say, and then you, you know, you go at it, and you know, looking and and sometimes you feel sort of right in front of it. But there I find that, you know, if you, if you don't have access to opportunity and horizon, that is not a mental health thing, right? I mean, it's not, not the normal thing there. But there should be something about like, there should be a prescription for that, you know…

Denise Campbell: I understand, because I think about poverty. I think of what does poverty bring out of people living in circumstances of lack. So what came first? Right, depression, the sadness or their right? The social circumstances? They're the they're depressed and they didn't work and they didn't want to work, and then there's laziness, and then then it's like all of these, and it's like a or maybe it's lack of opportunity, as you said, growing in, like, what it's like, tell me, let's go all the way back. Yeah, you know you, you felt broken, yeah, let's talk about that. Well, you never, as you said the time in a doctor's office.

Lisa Ndejuru: That is like, Okay, let me, let me just summarize this in 15 minutes,

Denise Campbell and Flavia Novais: A whole generation, a whole generation, right

Lisa Ndejuru: And then it means that I actually had that analysis right. Like, yeah, that I can just, just tell you that, and then you can, oh, of course, let me prescribe some. What, what? What do you prescribe? What do you prescribe?

Part Three:

Amira Mahamud: How do we respond to and cope with pain, and how can we re-imagine pain in the future? What can we learn from pain? Is there a way to live with pain detached from an identity of suffering? We can look to our guests  Lisa Cooper, Lisa Ndejuru and Tamika once more for possible answers to these complicated questions. 

Lisa Cooper: I think for me, black pain serves as a teacher, because, again, it pushes me to acknowledge that pain is all around me, and pain is a necessity. It's a normal part of my life as a disabled black person, but my life is complex, and so are the lives of other black people. So even with all the pain I'm experiencing, I need to find space to let go and put down the armor that has has me tensing up with every blow from like pain and society and you know, like I need to like that is my work, and it teaches me that I owe that to myself as a black person, to go when I can to the places and spaces I belong and also to belong to myself and to forgive myself and love myself, because shit is hard, And you know, in a world that is constantly consistently demanding strength and resilience and armor from us as black people, we forget the importance of vulnerability and emotionality. And acknowledging the black body is soft and vulnerable to me, isn't about putting black people in a negative or victim mentality or space, but recognizing that as long as we're looking to tear down these systems of like ongoing trauma for black folks and working to prioritize things like healing and knowledge sharing and black life, we should be using black softness as a way that we can advocate for more compassionate and effective care.

Lisa Ndejuru: There's a, there's a, you know, there's sort of ways to work with different types of of suffering, different time, different ways. And one of the things that is always interesting is how people judge the way they suffer, right and dismiss and minimize. And a lot of the work is just sort of stating it's okay.

Tamika Walker: I think we would need individuals that live the experience, know and can help. I think right now, like I said, it's not it's not approach with care, it's not approach with a sensitivity, empathy. I don't get that sense. So I definitely think that we need to make some shifts up there. Are from, and even those who have lived the experience, because those are the ones who can also help change. If you've never lived it or never, I guess, nothing without nothing without us.

Amira Mahamud: After hearing testimonies on pain, but also determination and strength, how do we then imagine a future with and without pain? Flavia poses this question to Lisa Cooper: 

Flavia Novais: And like, as you were speaking, I was willing to ask you, like, can you tell me, what do you imagine that it could be like, safe space for us, or, like, thinking about Afrofuturism itself? Like, how can you imagine a future, like, for us?

Lisa Cooper: Um, I don't know, like, I think that, like, I think it depends on the day. Like, some days I think about, um, like, AI, and how, like, Okay, this is going to be wild, right? This isn't like something that's happening now, but like in 300 years from now, you know we have AI that is in our houses, and you know that is our companions from the time that we were young, so they understand our bodies and can support us with like, a variety of healing tools and with all like modalities and and things right, like, I imagine, like black people coming together and sharing resources like sharing like, like medications and things that they've created, and there being, like, a central hub for that sort of thing, you know, like, I don't know, a space station that we all go to from for time, from time to time, to, like, Take care of each other. Um, yeah, it's like, wild. I think about these things often, and I think about how like wild and wacky they feel. But with the progression of technology, I feel like if we all came together and worked on these things collectively, we could do that. I'm such a big proponent of, like, separating ourselves, like, literally from these systems. I think I want all the black people to move to Mars or something. We should be fighting and we should be like, supporting each other and, you know, going out there and taking care of each other in these, these ways, these political ways, like activism, all those things are really important. But like, I had a saying too before where it's like, and I know I've heard this from somewhere, it's like, it's just a like, just living as a black person in a world where blackness is not seen as beautiful. It's not seen as hard working. It's not seen as, you know, desirable. Just existing in this body is a political act, right? It? It is a it. It is radical, you know, and you know, very similar to the self care quote that Audre made, and I completely agree with that. I completely agree with that. And however ways that we I try not to judge the ways that black people live their lives, because shit is hard, but yeah, like, I want to live my life in a way that's alchemizing all this pain and making it beautiful and soft for myself and my family and my people, so yeah, and this is political.

Amira Mahamud: To conclude, let’s turn to the powerful words of Audre Lorde. In her book, A Burst of Light, she says:

“A better question is—how do I want to live the rest of my life and what am I going to do to ensure that I get to do it exactly or as close as possible to how I want that living to be? I want to live the rest of my life, however long or short, with as much sweetness as I can decently manage, loving all the people I love, and doing as much as I can of the work I still have to do. I am going to write fire until it comes out my ears, my eyes, my noseholes—everywhere. Until it's every breath I breathe. I'm going to go out like a fucking meteor!”

Amira Mahamud: In the wake of Lisa Cooper’s final words we are reminded that while Black Pain is an inherent part of being Black it should not define the Black Experience. By acknowledging, witnessing and reimagining Black pain we create new spaces for softness and liberation. The path toward equitable and dignified care is continuous but manageable if we   centre empathy, love, community, and resistance. We move closer to a future where the quality of Black life is not measured in pain. We thank you for taking the time to listen to the Black Pain Podcast. This podcast is part of the Enabling Accessible Healthcare Delivery Project—an Open Educational Resource to help healthcare providers offer better care for the disabled community. This podcast was supported in part by the Faculty of Community Services’ Anti-Black Racism Curriculum Development Fund at Toronto Metropolitan University and is part of the Enabling Accessible Healthcare Delivery project, supported by funds from the Ontario Ministry for Seniors and Accessibility Enabling Change Program. We’d like to thank our guests: Lisa Cooper, David Meyers, Tamika Walker, Nadia, Lisa Ndejuru, and Peter Emilike. Interviews were conducted by Densie Campbell, Fiona Watson, and Dr. Flavia Novias. Sound editing by Nicolas Field. Production and editing by Dr. Flavia Novais and myself, Amira Mahamud.