S1E3 John Noel Viaña: Transcript

In this episode I speak with Dr John Noel Viaña.

We discuss the use of art to present research, how art can help to express identities and perspectives, and its resonances with his work in justice and science.

Dr John Noel Viaña’s work is focused on the social and ethical aspects of neuroscience and biotechnology. He has interests in a range of bioethical issues and has engaged with researchers, clinicians and science communicators to explore justice, equity and diversity considerations in health research and promotion.

Dr John Noel Viaña, thank you for joining Concept : Art.

And thank you so much Pat as well for inviting me to be part of this. I’m really excited to answer your questions.

Well, I’m excited to have you here.

Can you begin by telling us a little about yourself and how you came to be doing your academic work?

Yeah. So I initially started as a molecular biologist and neuroscientist. And then I said it, you know, it’s like, looking at more of the ethical and social aspects of these technologies or of these scientific fields, it’s quite more exciting.

And I prefer to like, you know, engage with people more than, you know, being on the bench, doing lab work. So that’s when I pivoted my career trajectory to do neuroethics work, exploring ethical issues in different kinds of neurotechnologies, looking at how justice considerations and technologies from AI, but also to surveillance technologies for queer people and equity and diversity issues in brain and mental health.

It’s really interesting to hear you— I mean, I don’t like this term, but I’m going to just use it for simplicity’s sake: you’ve gone from the hard sciences into something which is more humanities influenced. Has art influenced your academic work or that part of your journey?

I feel like art is very important because, of course, you could throw away all the hard science facts, all the numbers and so on. But, you know, art broadly conceived, but also, you know, narrative, stories, visuals actually portray the more humanistic dimensions of illness, but also, you know, the ways that we interact with technologies in a more relatable way as opposed to just, you know, throwing about: okay, x percentage of people have recovered from this, five mice have this— It allows us to make a more fuller sense of the world.

So, I feel like art has always been an important aspect and has of course inspired me to, you know, take a more qualitative approach to my research in which, you know, we actually not just report numbers and figures –  of course, which are equally important – but you know, really provide more visual but also story-based narratives that allow people to relate more to the science but also to find it—

You know, how it actually connects to their everyday experience. Because I mean we interact with science every day, but you know, you know, in a way, we’re actually more exposed to art. Art allows us to make meaning of the science, but also of our everyday lives and everyday experiences.

A lot of your work in neuroethics has been considering the effects of biomedical interventions on identity. And there’s been a particular focus in some of that research on narrative, on the stories that people tell about themselves— I mean, you were just talking then about how art helps us kind of make sense of science or make sense of the world.

Has art influenced your thinking about how people tell their stories?

First, I think it’s also important to just clarify that, you know, in a way, for me, I just don’t see biomedical interventions as something that restore previous identities. You know, we could also see perhaps psychiatric conditions or neurological conditions or dementia as something that could potentially lead to fractures in someone’s sense of identity and self.

So, I think it’s also important to see that in a more nuanced way in which you know different conditions interact potentially with different interventions and all of which the summation or like you know the combination of which really leads to how a person’s identity is as seen by them, but also is seen by others.

And I think in a way art it really could be seen as something that you know could help us reflect on identity, you know, for instance when you look at Van Gogh’s paintings. You know, you would see how his psychiatric condition manifested throughout these paintings, throughout his life or in, you know, different forms of his paintings actually reflected on different mental states, but also you know to what extent various art have actually reflected on, you know, people’s lives, you know, like Taylor Swift’s breakup songs in a way that, you know, kind of like shows at which the different stages of our lived experience is reflected through the different art forms that people actually produce at various stages of their life.

And in one of the papers, you know, like that we’ve presented or that we’ve actually shown in the impacts of brain stimulation and identity, you know, that person actually expressed the newfound artistic traits or, you know, a newfound heightened sensitivity to like music and to light through painting.

So, art has been, is both as a way to express someone’s self, but also art is a way to make sense of someone’s life experiences, or of someone’s newfound narratives, or of someone’s struggles even. And it could be an outlet but it could also be for an external audience, a way to see people.

And mostly your research and my research, and most research I guess is very prosaic in its presentation. It’s blocks of text; it’s papers—

Do you have in mind any artworks when you’re thinking through your ideas that you’re expressing then in papers? Do they kind of influence your thinking or are they ways of helping you express some of those ideas?

Well, in a way, I feel like I’ve used art— I mean, I’ve explored different ways of expressing my research, not just through blocks of text but also, you know, I’ve tried, like, converting them into a dance presentation, into a verse choir presentation, and even presented them at conferences where I actually said I’m presenting. I did a dance number and I did, like, a group spoken-poetry thing.

And so I felt like art has really influenced me, not just in making sense of, you know, how I present text, but also in a way that, you know, using it as a medium in itself to actually engage diverse audiences and to really make them realise, you know, how to, kind of, like, visceral, visual and embodied impact as to how we actually perceive research information.

So, for instance, you know with a lot of the impacts of brain stimulation on identity and self, I’ve used, you know, like, art to actually express, hopefully respectfully, you know, what people with Parkinson’s disease suffer through with a lot of the slowness of movement, the rigidity. But then, you know, when you implant someone with brain stimulation, of course, that could lead to a semi-hyperactive self. A lot of, like, motor relief which in a way could shoot up beyond, you know, what people normally would perceive as normal.

So, people for instance would push a billiard table, they would walk for kilometres. So you know, and art is a really powerful way to express, you know, those, kinds of, two contrasts where you have the slowness of movement at first, when people have Parkinson’s, which then suddenly contrasted with, you know, dramatic, more erratic but also more energetic ways and of course dance is a very powerful medium to actually convey those two distinct embodied states, but also how those impact you know on their self-identity but also on their autonomy, because of course, if you could not freely more navigate into this world then that has an impact on yourself and, you know, dance is a really powerful way to actually express those kinds of, like, debilitating impacts of a particular condition such as Parkinson’s disease.

That’s fantastic that you’ve used some of those forms of expression to present your findings. I wonder if you could tell us, you know, if you have any specific artworks or artistic touchstones that you used for those presentations.

Yeah. Well, I think a lot of the music for we’ve used, that I’ve used as a, you know, as a background music for doing those dance presentations.

For instance, when we had those presentations on the impacts of deep brain stimulation and the identity, self, mood, personality, etc. We used, you know, for instance, Mad World song, you know, by Tears For Fears, but also was interpreted by several other artists such as Adam Lambert, to really express, you know, like how in a way it’s a mad world for people with, you know, dementia or Parkinson’s disease because not just of the impacts of the disorder itself, but also of the malignant social positioning that people press upon— The stigma that people put upon those with neurological conditions. So you know, it’s like: it’s a very slow song, it’s a very depressing song; every day it’s becoming worse; it’s very mad; it’s, you know, it’s a mad world.

[Mad World by Adam Lambert]

Basically, because your memory is declining or your motor function is deteriorating and you’re no longer able to actually take on the social roles, but also the professional roles that you’ve been occupying before, you know, it’s like people— For instance, for musicians, you know, if your career, but also your expression of your role depends on you being able to play the piano keys, but suddenly you’re already trembling, so you could not play music anymore and that is a very distressing state. And then, of course, that Mad World is very slow song. When people had brain simulation then I switch and shifted the music to Chandelier, which is a very fast song, was also a bit like a manic song. You know, it’s like, oh, I’m going to swing from the chandelier.

[Chandelier by Sia]

You’re really expressing all the, kind of, newfound selves that people had in a way that they’re actually, “oh, no, I’m going to swing from a chandelier, when before I was in this very slow state.” And I was, did pole dancing that time, I climbed up a pole to express, you know, to have it. And in the first dance it was very grounded, contemporary to show, you know, the difference in mental state, you know, before because of your— The depressive symptoms but also because of, you know, the inability or like you know the diminishing function in some areas.

Then it’s on the ground, but then suddenly because of this heightened sense, not just from the motor restoration but also from the potential psychiatric impacts of the brain stimulation itself. So, you know, I go up, went up the pole in the song Chandelier and that kind of contrast from being more grounded to something that’s a bit more aerial represents a difference in, like, emotional state, but also in a way that this newfound capacity is, kind of like, you know, have impacted people’s mood and, you know, what they think they could do.

You’ve got Mad World sort-of prefiguring the environment these patients are experiencing and their, kind of, personality disintegration. And then you’ve got the kind of restorative— Complicated restorative, kind of, response expressed in Sia’s Chandelier. Of course, that music video also features some contemporary dance and it’s, kind of, this multimodal presentation of this sense of, you know, kinetic energy as you were describing.

So, you’re playing this song and you’re performing your own sort of dance – routine’s probably not the right word – but your own, you’re giving it, your own dance performance while that’s happening. And this is paired with a, a kind of a, a more conventional presentation of your, of your findings? Or is this the form of presentation for your findings?

Well, you know, I was part of this neuroscience Master’s programme and we had our, like, kind of like, alumni homecoming. So, I first gave just a normal presentation. And then I presented a music video actually of me dancing that way. But another conference I had, in this European Forum Alpbach, which is, you know, highly interdisciplinary conference, people from all sorts of disciplines come through this small place in Austria just to talk about all sorts of academic things. And there I had a dance and a verse choir presentation where we actually, you know, it was like: we’re a group of ten and we had this choreographed dance routine to actually express a lot of the exact same themes, but the whole presentation was basically a dance and a spoken-poetry where we narrated some of the narratives that have been presented in our papers on deep brain stimulation. So, I’ve explored both types of presentations. One is a normal presentation followed by a music video and the other one is the presentation itself is an art form in a way of dance and spoken-poetry intertwined.

That’s fantastic, John. I think that’s really interesting.

How do you think that this form of presentation has been received by your colleagues?

I think they were shocked, okay, because, like, no one would think that, you know, people were— Everyone was, well, in that conference, for the neuroscience one, just an alumni event. And, you know, I mean scientists are not really trained to dance their PhD. People are not really expecting it to be presented that way and I did not give any hints. So, you know, people were shocked. But I think it made it memorable. Because, you know, it’s like when you go to a conference, you’re bombarded by, you know, like, I don’t know, 35 minute presentations and I think at the end of the day which ones would stick is actually the ones that gave you the shock value. So, I think it really helped drive the message. But also it helps people remember. So I think you know, if you want to really drive a message and make people remember, then you have to give them a shock factor because that’s the only way that, you know people, when they go back home five years later it’s like, which presentation did you remember the most? Well, obviously that’s— I mean, hopefully in a way, that was the one that actually was the most different.

Yeah, I mean, ideally, at any, kind of, communication event in any interaction and, and especially in an academic conference, you don’t want to just leave a memorable impression – although that is one thing you want to do – but you actually want people to walk away with the weight of your findings and, and the investigations you’ve been doing, and hopefully to be affected and moved by it: moved to do further research, or moved to, kind of, agitate for change, or just to think more deeply about a set of issues. So, I’m sure that’s what would have come out of these presentations.

Yeah. Yeah. But I think sometimes, you know, when you do your science research and you’re too detached from the actual people whom you’re working with, you know, you’re working on, I don’t know, like a particular gene in mice. And in a way, of course, that’s really important because that helps us understand the basic mechanisms of a condition. But in a way, you know, if you’re too focused on that sometimes, and of course in that kind of literature, people could be a bit too detached from the lived realities of the people who actually have that condition.

And so I think hopefully through that presentation, you know, people have been reminded that, you know, at the end of the day, whatever something in the lab, you know, in a way has some ramifications. And these, of course, these are mice that have particular conditions. But, you know, the— What people experience, who have these conditions, it’s not just memory. It’s way beyond that.

And also to, like, pin down the message that, you know, it’s not just having an internal impairment. It’s like how the environment reacts to that impairment, how people socially position those with a psychiatric or neurological condition also has a profound impact in the ways that people live and their quality of life.

Your work regularly considers not just, kind of, some of those things you’re talking about there, kind of objective conditions or even explicit or conscious choices that organisms or people make about how they interact with their environment, but also how those choices are formed and guided and sometimes express themselves through social and environmental factors.

So what are some of those factors that you’re thinking beyond cognition? Why are they important?

Yes, I think in one of our commentaries called Beyond Cognition: Psychological and Social Transformations in people with dementia, there are two things that we had in those papers. One is that, you know, dementia has always been associated with cognitive impacts. But the other thing that we wanted to drive in that paper is that, you know, people with dementia also experience psychological symptoms but another way, which is I think what you’re highlighting to words is that the ways in which we provide environments for people to make decisions also impact first your sense of self, but also impacts the way in which they can make decisions. So, for instance, people with mild dementia could actually still make some decisions.

And sometimes, there’s this term by [Tom] Kitwood called malignant social positioning wherein, you know, just because someone has a diagnosis then you automatically assume that they have limitations or they have social limitations. So one clear example is that, for instance, you’re in a room and someone has dementia there and someone just decides to suddenly go out and, you know, just to go out of the context and walk around. And often that kind of behaviour, if someone has dementia, would automatically be assumed to be wandering and assumed to actually be a symptom of dementia, whereas if you don’t know someone has dementia and someone just goes out of the room, walks around, maybe you think they just want to pee or you know, they just, you know, they just want to have a breath of fresh air, or they just had too much and just want to take a short break.

People can no longer wander when they have dementia and that it’s something that is very pathologic already. If someone has dementia because, well, they have dementia and you attach the behaviour with the diagnosis when in fact these people could just be bored or they could just want to have a fresh air. Maybe they just want to pee as well? So, you know that these social environments that we actually put people onto really has a profound influence on, well, the sense of self, but also, you know, they would doubt, “oh, now I have dementia, is everything I do actually wrong now? I could no longer, you know, walk or walk away from particular situations?”

So, I think that really highlights it in a way that, you know, autonomy is restricted by particular conditions, but also in a way that we could find potential solutions that, you know, doesn’t undermine people’s remaining sense of self and people’s remaining sense of self-worth.

I wonder if you’re ever thinking about art when you’re thinking about these things beyond cognition?

Well, I think it’s also important to think about art because, you know, it’s like an artist’s work. It’s not just an expression of them, of their desires, of their methods, but it’s also heavily influenced by, you know, the social milieu. Whatever art they created is heavily influenced by what they’re going through in life but also by how people would interpret it.

And so, you know, different artwork could be interpreted during different time points because at some point the artist might be dead already and no one could actually, you know— And how it’s interpreted is based on the interpreter’s perception of the artist, of the work. So, you know, it’s like how the interpreter and the one who is doing the art, kind of, conglomerates or, kind of, like, you know, influences how particular artwork is perceived, and sometimes the intentions of the artist might not necessarily be the ones that actually are perceived, you know, by whoever views or listens to the artwork.

So, I think it really resonates with that: that, you know, in a way that— But also of course, you know, the artist might not be intentionally wanted to pick something; but it’s also like, you know, might reflect the broader environment where the artist lives because that’s where they grow up or and maybe it’s not their intention to depict something, like a background for instance, but then it came out of the art because, well, it reflects, you know, the environment that the art is, has been exposed to or the subliminally, you know, it reflects the face of their life and, you know, whoever interprets that also comes with their own sets of experiences which, of course, impacts their interpretive frame of the artwork.

I think that’s a really useful way of thinking about art; is that we all bring ourselves to interpret a piece of art and, and our selves can change over time, so therefore our interpretations can change over time.

So that’s true of art and I wonder if it’s also true of science, which I guess brings us to the next thing that I think would be useful for us to talk about. Because it’s evident in all your work that individual wellbeing and fair and informed outcomes are key in your, kind of, bioethical work. But your focus on justice has gone beyond that, kind of, clinical aspect and into the way that science itself is practised and communicated and a big part of that has been making sure that science is an inclusive space and that scientists can bring their authentic selves to their work.

So why do you think science needs to be more welcoming to queer people?

I think so, yeah, a lot of my work lately is on, you know, diversity, equity and inclusion issues in science and trying to like, you know, look into to what extent science could be more inclusive of people from racial or ethnic minority backgrounds. Also people from queer, people of, you know, people of colour but also people who are LGBTQIA+ and, of course, people who have the intersection of those identities.

The greater or the more diverse teams are then the better the outputs are, but also I think it we just create a more socially cohesive society when we actually think and value people as they are. In one of our book chapters that we’ve published together with several queer Filipino neuroscientists and also science communicators that, you know, if people don’t feel welcome or people don’t actually feel that they have a space to express themselves and they actually restrict what they can do.

So, for instance, you know, one author in that book chapter said, you know, because his PI or lab. leader would invalidate his relationship with another guy and, you know, would say that “oh, this queerness is just a phase” and, you know, he wouldn’t feel confident when presenting in conferences, when working with others.

So, he would feel like he would mask those queer aspects of his identity which, of course, could potentially help in being able to, you know, express himself, to be more just comfortable with communicating. And, you know, it just really shows the extent to which particular stigmatising or discriminatory attitudes or environments could impact people’s ability to perform their work, but also people’s sense of belonging and people’s feeling that, you know, they could still continue in the field because people—

And it’s not just queer people it’s, you know, it’s, like, we’ve seen a lot of, you know, women in particular fields in engineering and geology and especially in very, you know, male-dominated spaces where if they are not represented or if they’re not given opportunities to progress then, you know, it really disadvantages them. And it’s also like, you know, makes the thinking in particular fields less diverse, which of course prevents them from allowing to see the more multidimensional aspects of the effects. And, for instance, you, you just see the science, but perhaps not really see the social dimensions of the science, because you do not have diverse voices or a lot of, you know, diversity in the room.

You know, if you did not account for indigenous insights in, for instance, you know, mining, or in surveillance, then, you know, you probably don’t realise that there could be some implications of the work simply because there was no diverse consultation, but also there was no diversity in the team in itself.

One thing I’d like to get your view on and give you an opportunity to talk about is Take Me To Church.

[Take Me To Church by Hozier]

I think it was just really inspirational and I think it resonates a lot with our book chapter Queering Science Communication because, you know, it’s like, it talked a lot about the lack of opportunities for a particular population to just, you know, queer people to actually take whom they love to church. And, of course, like, which limits their opportunities to in, in, in, in a bioethical sense, for instance, you know with end of life decision-making, who could make decisions for them with surrogate decision-making.

So you know, it’s like, even if they have been, you know— I have been in a conference on redesigning death care and there was a panel there on actually, you know, queer end-of-life or queer palliative care and for some people, you know, it’s not their parents or it’s not their siblings who actually know their most recent preferences or, you know, what they would really want to do with, you know, with whether they, they want to be resuscitated or not, where they want their properties to be actually placed. But it’s actually their partner whom they’ve been for 20 years. But then because of the laws, the social structures that we have had, for instance, then it’s, it’s not their actual preferences being taken into account, but someone who probably haven’t communicated in 20 or 30 years, which of course presents a big problem, because if you want to honour people’s dignity and autonomy, then you know whoever they want to delegate as their closest skin, or someone who is the best, well-placed to actually make decisions for them should be honoured, but then if there are no provisions for that or if we live in a society where we automatically think just because someone doesn’t have, isn’t married – well, obviously they cannot get married because of for there’s no same-sex marriage in that region – then it should automatically be the parent or the siblings, which of course creates all these sorts of tensions.

In a way that, you know, it’s like, well, whatever is done to them medically at the end of their lives, for instance, perhaps might not reflect their wishes. So, I think this song really resonates with that and a lot of the justice work that we’ve started, I’ve been starting to explore.

That’s fantastic. I, you know, I was really struck by the linguistic connections between expressing oneself “unfurling one’s cape” was the, the translation that you gave in the, in the paper, in the chapter, and science communication. There’s such a linguistic, almost parallel between those two terms so I think it’s really interesting that effective communication requires authentic expression on the part of the people who are doing the communicating.

And in the case of science, that means authentic participation in science by those people actually doing the research.

Yes, so I think in that book chapter, I really used the term— It’s a Filipino term called paglaladlad, which is unfurling one cape, which is actually to, you know, to actually allow people to expressively authentically express themselves and in digital science communication, we had this like, section in that chapter where they choose—

Actually a trans teacher was heavily ridiculed by even his other queer peers, or other gay peers like, you know, “why can’t you just be a gay man?” and so on, which of course impacted her ability to be— Her emotional wellbeing first and foremost, but also, you know, her ability to be, express herself and you know, when we talk about reproductive systems, reproductive organs, medical technologies, then I think it really is important to not just tell them or communicate them as like hard, cold facts. “Okay, this is the female reproductive systems. This is the male reproductive system, etcetera.”

I think it really is crucial, you know, there are some nuances. There are people who are born intersex, for instance; there are people who transition, and of course that leads to profound, you know, happiness and fulfilment for them, and who is better positioned to talk about these medical procedures than people who have undergone it themselves? And often we neglect the power, but also the richness that lived experience can provide.

And, you know, it, of course, that would allow kids to have, you know, a more fuller understanding of other people. But more than that, I feel that it allows people to be more empathic and to, to have more respect for others just because someone is different just because someone transitioned, it doesn’t undermine their self-worth that, you know everyone should be treated with respect, with care and with dignity. And I think it really is important when we communicate science, we see that, you know, what we communicate actually could have profound impact.

If we communicate things in a stigmatising way then it could actually create particular— It could make people’s life worse, actually, because we create a society wherein we automatically stigmatise as opposed to actually a society where we exert more effort to uplift and care for others. So I think it really is important we— You know, to consult people we are communicating about when we communicate, whether it’s about trans people or communicate about people with particular brain or mental health conditions. But we also consult those people and we provide a more nuance and a more human, humane perspective that highlights not just them, as someone who has a particular condition, but them as human beings with, who have been affected by that condition, but who could also find meaning beauty and strength from that identity or from that condition.

That’s been a really rich conversation, John. Thank you.

What are you currently working on?

Yes, so I’m currently working— I’m just currently finishing my work on, like, you know, inclusion in, of my racial minorities and biomedical research and understanding our, like, trying to unpack the structural factors that impacts, you know, that, or that influences who gets to be recruited, or who gets who, who doesn’t get to be recruited in biomedical research offerings in, in a, in a condition like COVID-19, you know, what are some of the factors that would influence who gets tested? Which, of course, influences whom you actually recruit in those studies. So, yeah, trying to, like, just finish this, kind of, research and trying to make sense of my qualitative data from this, kind of, semi-ethnographic work.

And of course, listeners can find links to Dr Viaña’s work and some of the art we’ve discussed today in the show notes and on the Concept : Art website.

Dr John Noel Viaña, thank you for joining Concept : Art.

Yeah. Thank you so much Pat for the opportunity.

Concept : Art is produced on muwinina Country, lutruwita Tasmania.

Always was, always will be, Aboriginal land.


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