On Pink P-values: An Interview with Dr. Francisco Ibañez-Carrasco

By Oles Chepesiuk

Francisco is a Toronto-based writer, educator, and community health researcher who currently is a Senior Research Associate at the Centre for Urban Health Solutions, St Michael’s Hospital. He was born in Santiago, Chile and moved to Vancouver where he forged his own Ph.D. program in HIV education. He has written numerous academic papers, penned three autopathographies, and edited a textbook on community-based research. His most recent book is “Giving It Raw: Nearly 30 Years with AIDS”. I caught up with Francisco over coffee to pick his brain about whether there’s a queer perspective in science and whether scientific endeavours can actually centre human values. Here’s what he had to say.

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First of all, would you say you’re a scientist?

Mhm.

Would you say that science is oppressive? Or is that a blanket statement?

Ok, let’s say it’s oppressive. But I think the business of science is more oppressive than science itself. Science is kind of a magical word. The problem is that science is embedded in a globalized, neoliberal system where you have to have money, money comes with strings, and you have to have accreditation. I think in that respect it’s tremendously oppressive.

But that’s not a problem of science itself, that’s a problem with the kinds of societies we’ve created. I think science is very liberating, if it’s democratic. But it’s not; it’s tremendously hierarchical. We have NIH, CIHR, and SSHRC, and if you’re not in those, you’re not in the game basically. You’re no one. Those councils are where the money comes from, and their names determine your tenure and promotion. Authority comes from the hierarchy. So yeah, that is oppressive. Is there another choice at the moment? No.

And on top of that we had a previous government here that actively denied scientific evidence, around harm reduction, for example. There’s so much science – social science, behavioural science – around harm reduction and how it really contributes to the health of people who use drugs. And for communities to have safe injection sites, or alcohol dependence programs? The government said no.

So it’s not science itself but its institutions that are oppressive?

But that is science. You have to be in the business of science to do science. For example, to be a physician, there’s a core value of beneficence and there’s no doubt that people want the best thing for patients. However, if you look at it from a Marxist point of view, you’re embedded in a set of conditions that sometimes will simply not let you do that, no matter how well-intentioned you are. For instance if you’re a psychiatrist, saying: I won’t operate within the system! – but the antidepressants that you’re prescribing belong to a huge pharmacological, globalized business – you can’t really dislodge one from the other, otherwise you would be off the grid and you would not have a medical practice. So I’m not saying you have to sit and cry in despair over this, but you need to be aware of it. It’s disingenuous not to.

So the systems that scientists are embedded in constrain the knowledge they produce and the actions they can take. In your experience, what have you seen to be best ways to create resistance while working within these systems?

Well I think opening pathways for collaboration is one way. Interdisciplinary work is super important, but it’s still very hard for teams to be interdisciplinary. We all love the word, it sounds very cool. But again it has to do with tenure and promotion, and who’s nominated principal investigator. Everybody at first seems very okay with the idea: we’re going to have a team, and the team is going to have a social worker, and physicians, and a psychiatrist, and an economist. The problem then comes: are we really willing to open up our worldview to see this from the perspective of a geographer, or patients, or the police?

And then we know the stat that it will take many years for a discovery to go from ‘benchmark to bedside’. The scientists are doing their job, but I think it could be done better in the sense of working much closer with politicians, who move stuff. If you convince a politician that harm reduction is important, or transgender health matters, or the health of Indigenous children matters – if you convince them, the scientists have already done the research! (People in the communities are frustrated already because they’re like, ‘I can’t believe we needed a paper to show this’). And then the project of mobilizing health research slows down, because it then has to filter through the painful bureaucracy of policy makers and public health…

So the science is there, and what’s difficult to move is the culture and the political will. That’s where it’s important to have the patient on your side, because politicians will be very polite about the authority of the researcher, but if you have someone there who is actually experiencing the problems, and they try to kill themselves, or they overdose on fentanyl, and they speak up, that will definitely move things much faster than the research evidence will. The media and the politicians: those are the people we need to move.

So it sounds like you don’t have a problem at all with science itself, or the way that it constructs knowledge, more so the way that it’s not mobilized to actually help people?

Yes, well I was educated in Canada and brought up with all these ideals that science is oppressive, and that it’s gendered, and all that stuff. I think those problems exist, and I think we’re fighting with them every day. But I also think we have more ethnoracialized, queer, and transgendered scientists working across the board. We have a lot of women becoming physicians, more than men, and many of them from ethnoracialized communities. I see when I work with medical students, it’s a different group of people than what I saw 30 years ago. It’s promising. Amongst researchers, it’s much the
same.

But all of this is like talking about the upholstery of the car when the car itself is the problem. What has not changed is the entire machine.

So how do we change the machine? It sounds like marginalized identities have infiltrated the machine, but the machine is still busy at work…

Well take for instance the fact that we put researchers on ‘tracks’ in conferences, and God forbid you’re in the wrong track. There are very few physicians who are also epidemiologists or researchers. They have to spend a lot of their lives doing that one thing, getting accredited for their specialization. We don’t make it very easy to cross disciplines. We’re very afraid of having messier conversations. So I think education needs to be conflicted, and it need to be messy, not polite. I think those are the ways we can change the way people think about the methodology, the research, the results, and how they interpret their results.

Moving on, I’d like to ask you about the possibilities of queerness in science. Do you think there’s such a thing as queer science, or a way to queer science?

You mean like we paint something pink?

Is it something that researchers talk about?

Not really. But in the social sciences, in the way you ask questions and the way you see things – I think there’s definitely a queer point of view. I think what’s happened in HIV research, and I’ve written about this, is that we’ve queered the field. It so happens that if you go around in your everyday work and your everyday practice, talking, socializing, and mingling with queers, you become a little bit queer. By that I mean, it has nothing to do with who has sex with whom. Because HIV social science,
clinical science, and epidemiology really were influenced by queers, by gay men in particular, we managed to do a bit of a job on our researchers. So they’re able to see things in a queerer way, which in other fields is not so easy.

What about other areas of science, apart from HIV research?

I think if you were talking to cancer researchers, they would say, ‘Why would we need to look at things from a queer perspective?’ And I don’t know exactly what my answer would be, but there are a number of cancers that are particular to queer men and women. For example, maybe breast cancer for a lesbian is very different in a number of ways – and I’m not talking about the physiology… It’s lived very differently than breast cancer for straight women.

The queer perspective definitely makes sense in health and social science, because queers are
a social group.

There’s a lot of work being done to optimize clinical environments to be open to trans and queer people. Because twenty years ago, we thought ‘Oh, I have a practice, and I’m nice to everyone, so how can I be oppressing LGBT people?’ But it’s about language, it’s about disposition, and it’s about forms and pushing the bureaucracy. And now we have people realizing that their practices are really heteronormative: as soon as queer people step into my practice I’m saying, ‘You’re straight, right?’ But that sort of thing happens, even with gay doctors. I have a gay doctor that still had to hear from me that I needed an STI test even when I was married: ‘But you’re married’, ‘Yeah, but I’m a slut’. Do I
even have to explain to you that people have open relationships?!

It’s disappointing.

But it’s the norm. We’re still telling women they don’t need HIV tests. Only gays get it. That’s the narrative, and it seems very normal to people.

Apart from health or social science, do you think there’s a queer way to approach knowledge even in basic science, about cells for example?

Well, in the social sciences, humanities, and philosophy, we say of course there’s a queer way of looking at the world, and we invoke our major demigods like Foucault. He came to see the world in a very different way; he was a precursor to seeing the world in very specific, queer ways. From my perspective, with my background in the humanities, sure, there’s a queer science. There’s a way to bring something different to any group or situation, and by that I don’t mean better or worse, but something that cuts the moment with a different slant. You know when you’re having a conversation at a party and then all of a sudden there’s somebody that says something a little off-kilter? I think we queers bring that into things. I think it’s stimulating, and I think we should nurture that, because we need the weirdness in order to upset the balance.

So yes, I think there’s a queer perspective in science that asks, ‘How else can you look at the situation?’ i.e. ‘How can you queer the method by which we’re asking questions, or interviewing, or measuring something?’

But isn’t being able to think about things differently just a facet of creativity?

Using that lens makes sense. But scientists are not the most creative people; they are bureaucrats of a different kind. There’s innovation, but not a lot of creativity. Scientists are very methodical people, very rigorous, but creativity requires a little bit of going against the grain, in the way you conduct a study or in the evidence you take as your substrate. That’s kind of difficult to do differently, when everyone else is saying, ‘That’s weird!’ or better, ‘queer!’

The other thing that is very difficult for us is to mix the arts and humanities with science. This is very much still in its infancy. There are some sociologists that work with public art, and there are some research labs that invite poets. And there are actually residencies, in places like Mount Sinai Hospital in Toronto, for writers to come and work with physicians. But, for the most part, they stay apart.

I’ve had this conversation many times before because I’m a writer of fiction. Unfortunately I’ve been very strongly criticized for not being objective in my creative work. I mean in writing fiction, being objective is the last thing I want to be! I want to express a point of view very passionately. I’ve also been criticized for not having a beginning and an end in my writing, which are things expected in rational, positivistic thinking…

In your experience as a writer, how would you say your experience with prose informs your scientific writing, or vice versa?

When they let me do that? Because there’s a lot of censorship. People remind you in very active ways: ‘We’re not talking about writing, we’re talking about research methods’. And if you try to bring something too esoteric into the room, the conversation’s over.

Usually people say they’ll include an artist to soften and humanize the science. But I think that’s just a caption to the photo. ‘We’ll let you meddle in our midst, just so we look a little bit more humane’. But I think there’s an important switch that happens in the kinds of interpretations provided by artists. For instance, HIV epidemiologists usually think very cause-and-effect, seeing trends. But sometimes you need the voice of the patient to think differently about the epidemic at hand, to ground these trends in lived reality. To interpret the science from the patient or subject’s perspective, I think that’s where the arts make the switch.

There are very few artists or writers who are also scientists or clinicians. One that I always read and find fascinating, because he was queer, is Oliver Sacks. I mean, Queer! Gorgeous! Weird! He was into things like lifting weights, and motorcycling, and he damaged his body a number of times with amphetamines – how fascinating is that? He had a hard time of being queer with his colleagues. And at the same time he wasn’t really recognized as a queer because he didn’t sleep around. He actually did not have sex at one point for over twenty years. Whoa! So he was a bad scientist, a bad queer, and a bad clinician. He was interesting because he took a different road. (And I’ve never been able to recover from those photos of him as a motorcyclist!)

In terms of my writing science manuscripts, which I hate doing by the way, this is what usually happens: I try to do something different in my writing, but every scientist does that, and then the editors take it away. They take away all the adjectives, they take away all the high-flying thoughts and ideas. You have to report very succinctly on things.

But ultimately I think that’s why it’s important to have flexibility. To have multiple versions, multiple forms for your work, because the medium sometimes can be restrictive. Scientific journals are not a big business, and they’re very difficult to change. But that’s why you need to work in other forms that will reach different audiences.

Even though your creative writing has been kept apart from your research, you seem to have made a career that successfully combines open queer expression with health science. How do you reconcile your queer identity with institutional research discourses on health?

I have to remind you that I’ve had a very unconventional career, and there’s a reason I’m not in a university with a tenure track position. I never fit. But I have a really good career, in my hybrid environment: I’m an adjunct professor at universities, I work in nonprofits, and I can travel back and forth between the two. I’ve been recognized for this by my colleagues, but it comes at a cost. I do research on sexuality, and I’m very sexual as well. I’ve paid a price for being so openly queer, and so openly sexual. It’s not really welcome to mix these things, I mean not even Foucault did it!

So I get invited to some things, but I also don’t get invited to a number of other things, for example about sexuality, and my hunch is that everyone in that camp is not getting any or at least not very often! But they’re passing around all kinds of ideas and judgements, and they have all kinds of data, but they’re very unused to the idea of me talking about my life and knowing what I need best. That’s a problem with hierarchy, and that’s real life oppression in action. But you have to learn to move through it. Consider, we queers are very used to the idea that health scientists know everything there is to know about gay health and why gays get infected with HIV. It’s amazing: I don’t, but they do! But I’m the one having sex, and I’m the one being open about my sexuality, so therefore I’m less reliable.

That’s how queerness can affect the discourse, but for a price. I don’t blame students who decide not to be openly queer or trans, because it is difficult. You always have to pay a price: personal or professional. There is a tradeoff, and certainly I can say this has happened in my life.

Do you think there are in fact ways of creating science that is anti-oppressive, and that actually centres human values like intimacy, love, and justice? Can science actually bring these human values to fruition?

Oh, absolutely! People are doing that. As I’ve said, some of this happens through the infrastructure of scientific work, in its funding and institutions. Some of it comes from the methods of science, for example in the deployment of community-based research. Some of this humanity develops when you bring in people from outside the traditional institutions of science, in the rare instances that it happens.

And some of it happens via knowledge transfer and exchange, when scientific research actually benefits the people who it takes as subjects. If you share everything from behind the podium, you’ll have an audience that is very small, and you won’t move anything. However, the responsibility of sharing research in broader ways and using various media is a lot of work! The system is such that you do your manuscripts, and then you go home, because that will give you promotion and tenure, or that will give you good standing in professional schools. When you try the other stuff, the communication, it’s an additional piece of work. And it’s not always readily recognized. It’s a lot of extra work, but yes, it exists, and I think eventually there will be more recognition of these additional ways of working.

I know for example that researchers in mental illness now are working with patients to create websites on particular conditions. There has been a big effort by the Mental Health Commission of Canada over the last few years to make such a change in their research culture. So scientists among others are communicating things like: ‘Five ways to talk about mood disorders with your HR person’. That’s the scientific work that I like. You know it has an impact, it’s sustainable, and it’s manageable. How do we move this knowledge to your HR department, so they understand that you have to be away from work? That’s justice. And for me that’s practical, real connection of science to human values.

Fantastic stuff. Before we finish, can you tell me a bit more about the writing you’re currently working on?

I’m writing a novel that is inspired by Houellebecq and Dennis Cooper. It’s about this urban angel who’s a meth addict. And usually meth addicts are demonized by everyone, including gay men; there’s this very strong judgement. So I wanted him to be my hero/anti-hero. This is a very happy meth addict. He dies in the end.

Spoiler!

Well, it’s a bit like the lesbian novels in the ’50s. They had to die in the end, because they’re curse women, right? That’s changed a great deal, thank God. Anyway, don’t abandon your artistic practice, it nurtures the soul. It’s so important to have a sanctuary. Writing is where I can really say a lot of things, things like, ‘What if meth addicts are having a good time?’, Lord forbid. Let me just put it out there! In a society where we all become drug users, from Advil to fentanyl to coffee, why is it so crazy to think people live interesting, fruitful lives being drug users? Just saying!

Well, Francisco, it’s been a pleasure talking to you about science, writing, and queerness. You’re certainly very busy with these multiple endeavours. What keeps you so motivated?

That I’m alive! I was scheduled to die in the early ’90s. I acquired HIV in ’85, so by ’95, it was exactly ten years on the dot. The medications only appeared in 1996. At that time it was predicted that in ten years or less, you would get full blown AIDS and die a slow, horrible death. You’d have pneumonia, and be covered in Kaposi’s Sarcoma, which I was. I don’t need any more motivation than that.

I’ve also been very lucky, and I’ve been very stubborn. I’ve refused to whine. I’ve made a career from being out and public, and even though I’ve paid a price for it, it’s still been more rewarding than not. I’ve been very sexual when a whole system is telling you: ‘You’re infectious, you shouldn’t be having relationships, much less with guys who are HIV negative’. So I’m stubborn and I’m contrary and I’m alive. You don’t get second chances too many times in your life, so I’ll make the most of it.

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