Podcast with Matimba Swana

EIC Brandy Schillace speaks to Matimba Swana and Kumeri Bandara about the Black and Brown in Bioethics program, and working harder to bring ECR scholars into print.

 

 

TRANSCRIPT

SCHILLACE: Hello and welcome to the Medical Humanities Podcast. This is Brandy Schillace, your host and the Editor-in-Chief of Medical Humanities at BMJ. Today I have some special guests, and I’m really excited to introduce them and to have them talk to you about something called Black and Brown in Bioethics. So today, I’ve got Matimba and Kumeri, and they’re going to tell us how they started this organization, what it’s for, and how that intersects with medical humanities. So, welcome guys.

SWANA: Thank you. Well, I think we’re both really excited to be here. And I just wanna add that we have a third person, Harleen as well, who’s part of Black and Brown in Bioethics and also a co-founder.

SCHILLACE: That’s wonderful. Yeah. So, why don’t you guys introduce yourselves first? So, Matimba you, and then Kumeri. And then you can tell me a little bit about how this, or you can also introduce Harleen since she’s not here, and tell us how this all came about. Because I think it’s incredibly important and really, really a wonderful organization. And it’s led by you.

SWANA: Yeah. Okay. So, in terms of introducing myself, I’m a PhD student or PhD candidate. I don’t know what the appropriate terms is.

SCHILLACE: [laughs]

SWANA: I’m at the University of Bristol, based in engineering and the Centre for Ethics in Medicine. My background is clinical trials and working in stem cell research. One of the things I’ve found during, I wanna, I feel like it’s a long career, but for a lot of people, it’s probably really, really short, is how much health inequalities affect people and can really impact society. And that was one of the things that led me to want to do something, and that’s what we’re doing in Black and Brown in Bioethics. And we’ll introduce that a bit more, but I’ll let Kumeri first introduce herself.

BANDARA: Absolutely. Yes. So, I’m Kumeri Bandara, and I am a DPhil candidate at the University of Oxford, and particularly at the Ethox Centre. And my DPhil project, looks at migrants who work in care homes and the different ethical challenges related to that experience. And as the topic itself reveals or indicates, my interests lie at the intersection of migration, care ethics, feminist ethics, etc. And apart from that, I’ve also been involved here at the Ethox Centre in terms of putting together a feminist and decolonial bioethics reading group and also putting together, actually, maybe I can get to that later.

SCHILLACE: We can always come back. Yeah, but I do think it’s important, though, that both of you have, you know, both of you have work that really intersects with this concept of social justice in a lot of ways. And I think Harleen does, too.

SWANA: Yeah. Harleen is an academic clinical fellow and an ethicist. She’s also a PhD candidate in the Centre of Ethics in Medicine at the University of Bristol. And I feel like some of the things that she came across, which maybe a lot of people found during the pandemic, is she was working on ICU during the pandemic, and the people coming in to ICU, really, they looked like, they all looked like us. And there was definitely a skew of who was coming in, who was dying, which doctors were also being impacted by that. And she’s been doing a lot of social justice for a long time.

SCHILLACE: Right. And I think it’s a really interesting topic or a title that you’ve chosen to call it Black and Brown in Bioethics. I mean, first of all, it sounds nice, right? It’s got that lovely alliteration. But what was the, what motivated your choice for that title? Who were you trying to reach, your kind of audience for this?

BANDARA: So, one of the primary motivations, I think, is also this recognition thatthat there are no really regular events in UK bioethics which are led by people of color or focus on issues affecting ethnic minorities.

SCHILLACE: Mmhmm.

BANDARA: And just to be clear, there are amazing people out there doing amazing work, but there’s no node around which people can gather and come together with their work, with their experiences, knowledge, etc.

SCHILLACE: Yes.

BANDARA: And so, that was this gap, essentiallyAnd with that, the awareness that, oh, hold on a second. When you look at a lot of conferences, bioethics spaces, there’s a lack of color, so to speak.

SCHILLACE: Mm! [laughs] Yes. Right. But not in, yeah, it’s the opposite of black and white.

SCHILLACE and BANDARA: [laugh]

SCHILLACE: It’s white-white. [laughs]

SWANA: Yeah. And I think that we see that not just, because bioethics intersects medicine, life sciences, philosophy, law, all these different disciplines, and it’s very interdisciplinary. But at the same time, the issues that are talked about within bioethics are focused on things that don’t affect everybody. So, talking about issues of race, talking about kind of, I guess there’s queer bioethics, feminist bioethics, these areas aren’t considered “real” bioethics.

SCHILLACE: Mm, mmhmm.

SWANA: Which I think we need to really challenge that notion. And one of the things that we wanted to do is, well, achieve racial equity within the UK bioethics community by creating a network that expands opportunities for community engagement, promotes anti-racism, accelerates the wellbeing, education, and health of all people of color. And we started off, I think, with a WhatsApp conversation.

BANDARA: Yes!

ALL: [laugh]

SWANA: Yeah. It was, yeah, feelings of kind of disengagement, disenchantment, and also empowerment as well. Because other people have started doing this work and, well, I think people have always been doing this work, but it’s always been on the fringes.

SCHILLACE: Mm.

SWANA: And it came to the forefront in, you know, like the, I guess, the epicenter of everything in 2020 when George Floyd, you know, everything happened in the US, and then people were like, okay, this needs to be a conversation. People need to start talking about this. And I mean, I didn’t start doing this work in 2020.

BANDARA: [chuckles]

SWANA: I wanna just say that. But I think because these groups were more visible and doing things, that led to a sense of feeling a bit of empowerment and not alone. And then we were thinking, well, we can do this in bioethics.

SCHILLACE: Right.

BANDARA: Absolutely. And also, what started with the WhatsApp group then led to a meeting at a restaurant or pub. What would you characterize it as?

SCHILLACE: [laughs]

SWANA: It’s a pub. It’s a pub.

BANDARA: It’s a pub.

SCHILLACE: It’s a pub. Pub meetings. Pub meetings. [laughs]

BANDARA: Pub meetings. We took the train. Harleen picked us up, drove us over to this pub, and then we had this amazing conversation. It was so stimulating ‘cause all of us had been engaged in these different activities in our different spaces, and then to meet each other and to be able to riff off each other a bit, you know, and build off of each other’s energy, it was such an exciting opportunity to be able to talk about things and start brainstorming. And we just went wild thinking, are we still gonna do this? You know, why not? If you’re doing it, might as well just go all out.

SCHILLACE: Well, you should. And I wanna say a couple things that were just passing through my brain as you were both talking. One is that, that the work—we talk about this a lot at Medical Humanities—the work often is invisible. The work of promotion of disability is also often invisible. So, for instance, when you have a disability scholar, or somebody brings something to the fore, people see the product, but they don’t see all of the work that brings that product into being and why it might be more work for someone who is disabled or someone who is marginalized in some other way: people of color, people for whom English is a second language, women, all sorts of, people who are chronically ill. All these things that make producing this information possible is lots and lots of work. And many of these people lack the kind of support systems that traditional white, Western scholars take for granted. They just don’t understand that that kind of support system isn’t there: the familial support, institutional support, systemic support, community support. And the one place where I think we’ve, and I think you’re right, I think this coalesced in, sort of 2020 kind of made it, it was a bottleneck, wasn’t it, where you suddenly realized that the one place we are able to make that change, ‘cause we can’t change the systems, we have to change community first. And so that community-oriented-ness is really important and powerful.

And I think that’s exactly what you’re talking about. You came together as a community and went, how come there’s not something for us to rally around? How come there’s not a place for us? And I’ve heard this from people of color. I’ve heard this from the LGBTQ community. I’ve heard this from disabled scholars. There’s so many people. There’s much more, in fact, of people who are on the margins than people who are in the center. And yet there aren’t spaces for that, and we end up having to build them ourselves. And it’s not enough for a journal or a system or anything to say, “Oh, we value diversity,” if they’re not gonna build the ramps, and they kind of expect you to build them yourself. And that is, in fact, what you are doing, and I think that is just so powerful and impacting.

SWANA: Yeah, I like the way you put that about building the ramps. I think a lot of people, they don’t even know that you need a ramp to get into the building.

SCHILLACE: Yes. [laughs]

SWANA: They’re like, “We opened the door!”

ALL: [laugh]

SWANA: So, they can…. So I think it’s actually, the change that has happened is also people actually seeing like, oh, actually, yeah, you’re right.

SCHILLACE: Mm.

SWANA: There’s no way for you to get in here.

SCHILLACE: Mmhmm.

SWANA: And it’s starting to move to, well, maybe I’m being very optimistic to, “Let’s help you build this ramp.” I mean, not everybody’s there, but at least we have one or two people who are, which is a good thing, I think.

BANDARA: Yeah. And just to reflect on what both of you said on a more abstract level, what I heard was also that, there are, it’s almost a multi-pronged approach, right? There are communities we build amongst ourselves. But then equally, there has to be a recognition of the need to provide these ramps, and that is more of a structural change.

SCHILLACE: Mmhmm.

BANDARA: And all of these things would ideally happen at the same time because you kind of require these—and I’m sure there are other things we are not discussing here that are also important and relevant and necessary for the change to occur—but they do need to happen hand in hand. And interestingly, this is something that actually has come up in different spaces through the different events that we’ve organized with different collaborators: the need for community also to support each other as we are going through this journey so that it’s not just experiencing difficulty, barriers, and burnout, and then not feeling like you can keep going on. Which actually, tangent, this reminds me of the saying that—

SCHILLACE and BANDARA: [laugh]

BANDARA: More than a saying, it was a metaphor, I think, once someone said that, you know…. I forget who said it, or else I would credit them. But anyway, it goes that, , it’s easier, or it’s more fulfilling to be part of a choir sometimes than to be a solo singer.

SCHILLACE: Mm, mmhmm.

BANDARA: Because if you’re holding your breath, trying to hit that pitch or key— I don’t have a music background.

ALL: [laugh]

BANDARA: But then you go out of breath, and you have to stop, the music stops. Whereas if you’re part of a choir, there’s also this sense that you can afford to take a break, and that is more sustainable. The music continues.

SCHILLACE: Yes.

BANDARA: And you also feel surrounded by a support system that ensures that what you’re contributing is not gonna just crash and fall if you take a break. It’s just gonna continue.

SCHILLACE: Yes, I think that that’s value-, that is, that’s so valuable. And the other thing, too, is let’s face it. There is, I’m glad that there are people willing to help, as Matimba said. But there’s also backlash, and you need that support around you when the backlash comes. I’ll give an example just from Medical Humanities publications. We published a paper that was talking about white supremacy in medical education, and this was in the title, the word “white supremacy.” And the amount of, the number of letters [laughs] I received of people being angry that we used it. “Well, you shouldn’t use the word ‘white supremacy.’” It was like, “Well, why not?” “Well, it’s offensive.” I was like, “So you don’t want us to use the word, but not because it’s not true, just because it happens to offend you?” And they were like, well….

And what it turned out to be is that people are uncomfortable with anger from Black and Brown communities and from women and from like. They don’t want, they’re perfectly happy for, you know, like, oh, it’s so wonderful that they have an organization. But the minute they show you that there’s, they talk about the ugly stuff, the George Floyd, the, you know, the minute they bring up those things, it’s like, oh, now you’ve crossed a line. And my response officially, my official response, was that it is not our job to police the anger of marginalized communities. That is a righteous anger. It is a correct anger, and there’s nothing incorrect about what it is that they’re saying. So, it’s interesting to me, and I have said this, I gave a talk at a university about this, and I was talking about the, you know, racism needs to be called racism. And you could see people flinching in the audience.

BANDARA: [laughs]

SCHILLACE: And I was like, can we not just say that word? Racism exists. It’s systemic. It’s everywhere. Like, oh my goodness. So, it is really interesting. The support system is also to help you not get punched down or gaslit or made to feel as though you should be quiet. And I think that that’s another reason why that communal support is just so valuable and important.

SWANA: Yeah. No, I definitely think that that’s a great example. And I don’t know sometimes as well because I feel like it’s becoming hot property to just be like, “We are doing” I don’t know what people are calling it different things, right? EDI, decolonizing, anti-racism, all these things. And is it real change? I think that sometimes is also frustrating, is this glossy like, “Oh, look. We have a statement on the wall.”

SCHILLACE: Yeah!

SWANA: And I’m like, I’m pretty…. [laughs] You know, it’s like, okay. And they’re like, “You should be happy we started to change things because we have this statement.” And then when you come in, and you’re like, “Well, things haven’t changed. Let’s really call things out and say what they are.”

SCHILLACE: Right.

SWANA: And then people are like, “How dare you? We put this statement up.”

BANDARA: [laughs]

SCHILLACE: Yeah, “We’ve done all this work.” Well, because I love metaphors, let’s go back to the ramp. It’s sort of like saying, “Hey, we need you to build a ramp into this building,” and they’re like, “but we repainted it for you.”

BANDARA: [laughs]

SCHILLACE: Thank you. Still no ramp, you know? So, that brings us actually very nicely into the next part of what I wanted to talk about, which is, we are in the process at Medical Humanities, we have this thing called path to publication. And this is a way of changing the way publication works. And what I mean by that is there are so many people who don’t have the proper support systems that it’s very difficult for them to get into print. It’s very difficult for them to get into publication. So it’s not an equal playing field at all. So, we’ve developed this as a way of the journal building ramps, of us as the editorial community building ramps, and trying to help people get into publication by supporting them before the submission process, so kind of creating communities of writers. We’ve been doing it with the disability community. We’ll have our first disability topics collection in December that I’ve been a big part of.

And, very exciting, we’re doing that with Black and Brown in Bioethics, and we’re doing this slightly different. It’s a research forum. So those of you who are listening who might be interested in this, it’s a little less large and onerous as an entire topics collection. It actually happens over the course of the year. So instead of all the papers being published in a single issue, two or three appear in, say, March, and another set appear in June, another set in September, and etc. So it’s rolling, and it’s a similar kind of situation where we are bringing folks together to have mini conferences to put them in touch with each other so that they can triage papers, so that they can talk about summaries, and that they are able to mutually provide that communal support that is sometimes lacking in the institution. And then I, as editor, am also helping to triage and help to form ideas prior to submission. So, I was wondering if you wanted to say a little bit about the experience of creating this research forum for Black and Brown in Bioethics and some of the successes, the frustrations, the things that go into something like this. Because I think, I hope it inspires a lot more.

SWANA: Yeah, Kumeri, do you wanna maybe start with the publication, kind of podcasty thing that you started with before?

BANDARA: Absolutely. Very happy to do that. So, as a backdrop to the research forum, we have had a series of other activities that we have done through Black and Brown in Bioethics that inspired us to work on the forum. So, to start with, we had as part of our podcast series on power and privilege in academia, we had one podcast with Dr Agomoni Ganguli-Mitra and Dr Sabrina Germain on inclusivity in publishing. And here, we basically discuss the various kinds of barriers and issues and biases inherent in the publishing game, so to speak, and how it is flawed in ways and how it can improve, and how perhaps the biases that exist can be recalibrated to be more equitable in a way. And as part of that, some of the, if I were to name some of the issues that came up through this discussion, they were to do with gatekeeping. So part of it being with editorial teams and reviewers of major journals being from more high-income countries than low-income countries, and that in turn shaping the different audiences that are targeted or what topics count as bioethics, right?

SCHILLACE: Right, exactly. Mmhmm.

BANDARA: So this narrowing down of topics of relevance, and equally, of some other topics being marginalized as being less important because it’s not conventional or canonical bioethics, as Matimba mentioned before. And so also, this also would lead to whose research, the question of whose research is being published, right?

SCHILLACE: Right, right.

BANDARA: Who counts as an expert?

SCHILLACE: Mmhmm.

BANDARA: And so, there were all these questions that came up as part of it. And equally, another gap or issue was to do with the kinds of background collaborative spaces and opportunities required for people to be able to discuss ideas, to then write on them.

SCHILLACE: Yes.

BANDARA: And that requires, again, meeting at conferences, going to all these workshops, which often require financial resources to be able to enter these spaces, among other issues of, or barriers of visas and whatnot, if you’re from a low-income country. And so, we were becoming more and more aware of these issues that we had already, you know, I think a lot of us have read about these issues on Twitter or X now. And through conversations with people, we are aware of these. But then it was good to come and just sit together, talk through these issues, and condense or distill them down to what they actually came down to. [phone rings at 20:06; 20:06 – 20:20 not transcribed]— [20:29 – 20:47 not transcribed] At the same time, we were also putting together a series of webinars,—and Matimba was the one who actually put the series of webinars together—and one of the webinars was on the Global North and the Global South, which is, I guess, another way of saying high-income versus low-income countries. In many ways, geographically, it all matches. Matimba, would you like to speak to that?

SWANA: Yeah, sure. I think when you were talking about kind of the reason we called our podcast series Power and Privilege in Academia, which, again, I think these words don’t always sit nicely with people.

SCHILLACE: Mm.

SWANA: And I think it’s because people think when it comes to powerful people and privileged people, that that’s just like the bankers, right? Like, this entity out there, these big finance people.

SCHILLACE: [laughs]

SWANA: And in academia, there’s a lot of power and privilege because it’s knowledge, right? That’s the money.

SCHILLACE: Right.

SWANA: That’s the thing that’s, who shares it, who owns it, who gets to say what, and where do they get to say it? How much weight does that hold? So we really were like, let’s try and turn some of these ideas on their head. So, with our global health webinar, it really was all about having experts from the Global South, right?

SCHILLACE: Mm, yes!

SWANA: Because it’s like who decides who’s an expert? And then the person that chaired it is from the Global North, but the actual speakers and everybody in it were, they were from the Global South. And I think what was quite nice is the people who attended the webinar, it was kind of split 50/50 across countries that would be considered Global North and Global South. And I think that really helped gather momentum. And people were like, okay, this is something that we really do need to start challenging and focusing on. And, you know, people are saying these things, and they are experts and they, you know, it’s…. I think that changed some minds, which was really nice.

SCHILLACE: Yeah.

SWANA: And not everybody is, but, you know, it’s still good, even if it’s a small percentage. And then we’re thinking, well, why don’t we also start trying to change the publishing landscape?

SCHILLACE: Mm, mmhmm.

SWANA: Let’s just reimagine things and think about— ‘Cause these are, you know, we need to know all these issues that exist now, and we can really start thinking about the future and thinking these can be issues of the past, right? And just taking action now to change things and being like, let’s do this. Let’s start with these small steps. And I feel like this research forum is gonna be that next step to be able to start changing and sharing knowledge. And people can learn from other people that are “on the fringes” or whatever people wanna say, so.

SCHILLACE: One of my, I’m mentally plotting all of this, but not actually, because I don’t wanna mess up the tapes. But [laughs] one of the things we say often at Medical Humanities is we call these a conversation. At the end of each of our podcasts, we say, “Thank you for being part of the conversation.” But there’s talking at and there’s talking with. And as I think I say in the very first Medical Humanities video we ever did, “with” is a powerful word and that with and from, better than at and to, you know. So, I love this, and this is exactly what we’re trying to accomplish because—and this is a challenge in publishing, as you point out—it’s a challenge in publishing because our very standards for how we, what we accept as papers are also white and Western and in the English language typically, too. And so, it’s very, very difficult. How do you evaluate properly? How do you find reviewers who will understand the work and the value of the work that you are submitting in a way that is different from traditional, you know, traditionally published items? So, for instance, we recently published a paper about decolonializing research that was such an unusual structure, we had to think really hard about how to present such a paper that was trying to be written in a decolonialized way, talking about decolonializing research. And they did it sort of as an autoethnography, and it’s very successful. Actually, I’m hoping to get some commentaries on it ‘cause it just came out.

So, you know, these, you’re right. I think the needle is moving, but the needle is moving because the people who need the ramps are actually the ones building them. We need the people from these communities to tell the rest of the world what is necessary and what is right. Not because we want to include them because it ticks some inclusion and diversity box, but because they have things to say and to share with us that are important. And I think that gets missed out a ton in discussions of diversity, where they don’t, they’re like, okay, we’ll do diversity because diversity is the right thing to do as opposed to realizing, no, you have things to learn from these people. You do not have it all together. [laughs] The rest of the world can teach you things. And I really, I agree, and I hope that this research forum is part of that. So we’re really excited about it. We’re hoping to get the first, we’re hoping to get it in 2024, if not in 2025. But for all of you who are listening, stay tuned. We are gonna hear more from Black and Brown in Bioethics, and I hope that I can have you folks back on again as well as with your colleague who couldn’t make it today. Any last words before we sign off for today?

SWANA: Oh, I wasn’t expecting that!

ALL: [laugh]

SWANA: I just think, like, this is an exciting time. I think it’s always nice to meet people who are also hopeful about the future. And I think just because things have been bad in the past and are bad in the present doesn’t mean they have to stay bad. And we can do stuff that’s not just for one person, but for all of us, right? Like, this is, we are an us, in terms of I don’t know, humanity, the environment, people, all of it. It is an us. It’s not just a me. So, that’s what I think, anyway.

BANDARA: Mmhmm. And I would also like to say that I really appreciate that this podcast is happening because I was just thinking that in the spirit of decolonizing how publishing or academic outputs or knowledge production or co-production happens, this tool contributes to that process of changing how these conversations take place and what kind of conversations are considered to be valid and important in the academic space.

SCHILLACE: That’s so true.

BANDARA: So, very excited and happy to be a part of it, all of this.

SWANA: Yeah.

SCHILLACE: Ah! So good to have both of you on. And thank you to all of you who are listening. I hope you will return again for more podcasts here and thank you for being part of the conversation.