Transcript: The artist who believes he's a zombie

This is a transcript of The artist who believes he's a zombie with Martin O'Brien as first broadcast on 4 April 2019. Presented by Beth Rose and Emma Tracey

JINGLE - BBC Sounds, music, radio, podcasts.

BETH - It's not often we get a zombie on the BBC Ouch podcast, and it's probably just as rare that we talk about BDSM. But this week you're getting a double whammy.

Now, there's nothing too outrageous ahead, but if you are around small people you might want to save this one for another time. In this podcast Beth Rose, that's me, and Ouch's Emma Tracey chat to Martin O'Brien, a London based artist who has cystic fibrosis. He is 31 and a half years old and has so far made it past two predicted life expectancy markers at the ages of five and 30. Now he considers himself a zombie: both dead and alive. He uses pain and the sexual and consensual practice of BDSM to illustrate chronic illness. He also chats to us about Sick of the Fringe, an arts festival in London this April, and the line between raising awareness of disability and exploitation.

We were fascinated by our chat with Martin and hope you are too.

[Interview] - I've seen you described as an artist, a theorist and a zombie; what is that about?

MARTIN- [Laughing] The first two are probably quite self-explanatory, right?

BETH - Yeah.

MARTIN - And then the third one, the zombie, the figure of the zombie is something I became interested in a few years ago. I have cystic fibrosis which is a genetic disease, so you're born with it, and your organs get clogged up with mucus. The mucus is particularly thick and sticky and it particularly affects your breathing and your lungs so you cough a lot, but it also has a very short life expectancy. I first outlived my life expectancy when I was five and then the second life expectancy that I outlived was 30. And that as I was growing up was the point that I was always moving towards, thinking I would die when I was 30, I would die when I was 30. And as I started to get closer to it around 27 or 28 I started to think about the figure of a zombie as this really interesting way of thinking about what the relationship between life and death and how they can exist in one body, and the kind of representation of the zombie in pop culture is this thing that is both alive and dead at the same time.

And then I sort of conceived of myself as a zombie when I reached 30, past that point at which I should be dead.

BETH - I feel like this is a really awful question to ask, but when you were 27, 28 and you've got this number imprinted on your mind how do you live your day-to-day life?

MARTIN- It was clear to me at the time that I probably wasn't going to die at 30 because my health was quite good. It was more about the weight of this particular number that was an expectation since I was a really little child. So, it was about moving towards this number. It became kind of invigorating rather than restrictive though actually, and I started to do things as my practice as an artist that were really interesting, like thinking about this figure of a zombie, or pushing to make work quicker, more urgently.

BETH - You're nearly 32 now, aren't you?

MARTIN- Uh-huh.

BETH - Did you spend your 30th birthday in an East London morgue?

MARTIN- I did.

BETH - That's quite a party!

MARTIN- I was thinking about what I could do that would mark this event of becoming a zombie, and I found an unused morgue in southeast London, and I spent the 30 hours leading up to my 30th birthday doing a kind of performance to camera in the morgue. So, I did one action on the hour every hour for 30 hours, and it ended as I turned 30. And then with all the footage we made a video installation which we showed at DaDaFest in Liverpool.

BETH - What's it like when you reach 30 and you've been aiming for that, what happens then?

MARTIN- It was a really strange moment because it was at the end of a 30-hour performance so the kind of celebration that somebody might usually have didn't really happen. But instead it was this exhale of breath and relief for both finishing the performance and then making this strange monumental point in my life.

A lot of the work that I've done has always used long durations to think about what does it mean to have a chronic illness, what does it mean to be born with a life shortening disease. And I've often made work that lasts for ten hours or 24 hours that audiences just come in and out of as they want to. I was just exhausted essentially, but exhausted and elated at that point. And sort of sitting there in a morgue is an unusual experience of celebration I suppose.

EMMA - It's such a broad-stroke question, isn't it: what's it like living with a life-shortening illness? But there's a generation now, a new generation who are alive when the expectation was that they would not be alive. What was that like for you?

MARTIN- It was quite emotional. I don't think sadness, but a different sort of emotion and one that created this urgency for me. People would always say to me, Martin you're moving so fast, just slow down a little bit, you're moving so fast. But it felt as though the speed is an urgency: it's about moving forward, a constant sort of doing what I need to do.

For a long time it was this number quite far ahead in the future: when you're ten it's still far ahead; when you're 15 it's still far ahead; when you're 20 it's still so far ahead; even at 25 30 still felt a long way off. It was only in the couple of years leading up to it that I thought, oh actually it's not so far away at all, but created an urgency, a kind of push that I needed to do something, to make something to keep going, keep moving forward.

EMMA - And how did it affect other people's expectations of you, so how you would do at school? People's expectations of you affect how you get on in life.

MARTIN- One of the things about cystic fibrosis because it's a disease partly of the lungs there are these expectations around what you could and couldn't do, what you should and shouldn't do. And of course there are certain taboos around people with illness. I think part of what my artwork is interested in doing is also exploring those taboos, so the idea of sexuality or people with disease having sex, that isn't really spoken about or thought about. The idea of exercise being something difficult as well; so a lot of my work has always used physical endurance or pushing my body to physical limit and exhaustion as a kind of method for showing disease, for making disease visible on my body. And sort of occupying a position, I say a political position, I always say when you're sick you can't not be political.

EMMA - And what do you mean a political relationship immediately?

MARTIN- You're always situated in a way as another body or an other body outside of what you might think of as the norm of the world that is designed for a particular type of body and you don't quite fit into that body. Even if with cystic fibrosis it's a kind of invisible disease most of the time, apart from the coughing fits that interrupt my speech quite a lot or the heavy breathing, and for me that is a kind of political position that you're always trying to find a way to be in the world or resist something or make something happen in order to be able to live better.

BETH - What sorts of things do you have to do to do that? Because you have a daily regime.

MARTIN- Yeah, I take probably around 50 tablets a day.

BETH - 5-0?

MARTIN- Yeah, 5-0. And then I have quite a lot of breathing things that I do as well, three different nebulisers that I take and a series of breathing exercises which is used to loosen the mucus on my lungs, beat my chest so that I can cough the mucus up. One of the things about cystic fibrosis is that it's a disease of overproduction, so it's just overproducing mucus constantly and you've got to get rid of it, so you're coughing it up and spitting it out, coughing it up, spitting it out.

And one of the other big things about cystic fibrosis is around the inability of people with cystic fibrosis to be in the same room as each other because of cross-infection. So, we're not supposed to be any closer than 6ft if we're outside, and we shouldn't be in the same room as each other at all. And there's a new big Hollywood movie that just came out in the UK last week called Five Feet Apart which is about a couple, both have cystic fibrosis and they sort of fall in love with each other and they can't touch each other.

BETH - This is a silly logistical question: I guess if you have CF you go to hospital?

MARTIN- Yeah.

BETH - How do hospitals do that?

MARTIN- You go in and they take you straight into a room so you don't see any of the other people with CF, and then the doctor, the dietician, the physio come to you. It's quite interesting in a way in relation to ideas of community because we often think about illness, so the sick people can infect the healthy people; and here it's the sick people can infect each other but not the healthy people. So, there's no physical community of cystic fibrosis, so it's quite interesting and isolating as well as a disease.

And I'm in a strange position in terms of my age group. This thing around cross-infection was only really discovered in the last 16 or so years, so throughout my childhood I would just share the hospital waiting room with all the other kids with cystic fibrosis and we'd play together. And then all of a sudden we're being told actually you can't, you've got to be separate.

There's an artist Bob Flanagan that died from cystic fibrosis in the mid-90s, a US based artist, and he made these performances with his partner and collaborator Sheree Rose, and he used to also be a counsellor at a cystic fibrosis children's camp. So, every summer all the children with cystic fibrosis would come and camp together for a weekend, sing songs together, do those kinds of things. So, all the sort of community has been stripped away, pulled apart, made impossible.

EMMA - I'm just imagining the cystic fibrosis songs, the anthems.

MARTIN- [Laughing] Yeah, there was one Bob Flanagan sang, Forever Lung instead of Forever Young. [Sings] Forever Lung!

EMMA - That's fantastic. We can hear you coughing and the sound of your laugh you can hear the lungs. I read somewhere someone say to you that a cough is communication without speaking.

MARTIN- Uh-huh.

EMMA - And then obviously you've also said that people without cystic fibrosis can't be affected. But they don't know that, do they?

MARTIN- The idea of the cough has always been so interesting for me, both as a human but as an artist and someone who also writes about sickness as well. And I did write something that was about the cough as this idea of the cough being the voice of illness, that it's speaking; that we all understand that the person on the train coughing is a sick person to keep away from. So, it's interesting for something like cystic fibrosis where the cough really is the voice of cystic fibrosis and I can't really infect other people. But of course on the train when I start my coughing fits then you just see this huge space open up around me. But the cough is this voice of illness, the cough is always trying to communicate something. So, in my performances I use the cough as a sound, so I beat my chest and make myself cough in the performances. And then usually you hear audience members coughing at different points.

But also the CF cough is a specific one. You're sometimes walking along and you hear it, you're like either they've been smoking for 50 years or they have cystic fibrosis.

BETH - So, with your daily regimen, and your art is really full of endurance, do you also then have to take your nebuliser? Does it become part of the performance?

MARTIN- Yeah, if I'm working over a really long duration the medication becomes part of the performance as well. My performances are about illness experience and disease and cystic fibrosis and the politics of sickness, so all of the medication becomes part of the performance, yeah.

BETH - Because your artwork as well is not painting or anything; it's quite dramatic, isn't it? Tell me some of the things you've been doing.

MARTIN- I make work which really comes out of this tradition that people call endurance art, which utilises the body as the material and often pushing the body up, putting the body through pain. So, I kind of use that to talk about illness experience and what it means to be sick. I use BDSM practices in my performance, practices of exhaustion to kind of make visible cystic fibrosis.

BETH - You mentioned your art involves BDSM; what does that mean?

MARTIN- BDSM kind of merged out of sexual practice which is sadomasochistic practice around ideas of pain and submission and the ways in which they could also be pleasurable. So, the BDSM community is a community of people who use either submission or plain as pleasurable practice as well. And in terms of an art context there's a whole history of artists who also practise BDSM as well. And most significantly, I've also mentioned him, is Bob Flanagan and Sheree Rose who had a full-time mistress slave relationship. They lived together for 16 years in which Bob was Sheree's full-time slave; he did everything for her as a slave. He was also a masochist which means that he took pleasure from the infliction of pain on his body as well.

BETH - I am quite intrigued about the pain thing.

MARTIN- Yeah, there could be a whole show on that.

BETH - Yeah. It seems like such an alien concept to inflict pain or to be ready to accept pain.

MARTIN- I think the important thing to point out is that pain can function in different ways. So, the pain of illness is not the same as the pain in a consensual BDSM relationship. And consent is the big word there: pain in illness or disease or chronic pain is always taking away agency, it's non-consensual and is a difficult experience. The pain in BDSM is about consenting, giving over the ability for someone else to inflict pain on you, and it's a very different experience.

Something that I use in my performances quite a lot is something called a re-breathe hood, which is a BDSM hood that goes over the entire face, so it covers the whole head, and it's semi-transparent latex and when you breathe in it sticks to your face and when you breathe out it inflates like a balloon around your head and it restricts the breathing. So, when I wear it it does this very interesting thing where it restricts the breath but you see the movement of the chest: the face grimacing fighting for air as the thing sticks to your face, so it makes the act of breathing visible.

BETH - And how long would you do that for?

MARTIN- That would be one part of a performance, so it wouldn't usually be extended periods of time and you can't wear it for that long. I can wear it for ten minutes maximum.

BETH - It sounds pretty horrible.

MARTIN- It is quite horrible to do to yourself. For me there's something in it that that performance isn't really about entertainment, being nice; but for me the performance is about communicating something. And disease is difficult and disease is messy, disease is abject and it's gross and it's disgusting and it's hard to talk about. So, the performance for me has to take those elements into it; there's no point in trying to water it down or make it look palatable for people. But actually just to go right, this is it, this is disease, this is the body in pain, and really stage that in a way that relates to sickness.

BETH - Is that something you really dread going into a performance?

MARTIN- It's a really good question because it's something that excites me. I talk about a fire inside, a burning that I really have to do something. I don't make it for the fun of making it, that's for sure; I make it because I have to make it. And I think all good art comes out of necessity. Do I dread it? A little, but only when it gets really close, I think oh no, here we go again. I also get a complete high; I feel totally amazing afterwards.

BETH - And does it do anything to the CF? Does your condition deteriorate or anything?

MARTIN- Definitely recovery time for a week or two where I just need to rest and recover. But the other side of it, which is really interesting that I hadn't thought about until I made a piece in 2011 called Mucus Factory, which was nine hours long, beating my chest, coughing up mucus, collecting the mucus in these pots, and then using the mucus in different ways such as hair gel to stand up my hair - it's very good as hair gel - as adhesive to stick litter to my body and as lubrication to [beep] myself up the [beep] with this sort of [beep] shaped medical equipment. And afterwards I went for my usual check-up at the hospital and they said, Martin your lung function is the best it's been for about ten years, what have you been doing? I went, well are you ready? [Laughter]

So, as a side effect of that of course it's performance, but I've still just been coughing mucus up for nine hours straight.

BETH - And did you feel really good after it?

MARTIN- Yeah, I was breathing in a different way. It's quite interesting, you think the pain and difficulty of it is one side of course, but then the other, which is a side-effect and not something I was even thinking about or trying to do, is the positive effect on the disease as well.

EMMA - It sort of reminds me that being ill can be a full-time job.

MARTIN- Yeah.

EMMA - Because you could literally spend the whole day coughing up mucus and that would probably help your lung function and stuff.

MARTIN- Yes.

EMMA - But it would mean that you didn't do anything else.

MARTIN- Yeah.

EMMA - The medication, are you worried about getting the right medications after Brexit? Is this something that you're worried about?

MARTIN- This is the question.

BETH - That's a good question.

MARTIN- Yeah. I have no idea what's going to happen, as I guess none of us do. But yes in short the CF Trust have said that they're working with pharmacies and that there won't be a shortage of medication. But of course there's a big anxiety around what medications are going to be available and what aren't. And I guess that's another instance of sickness becoming political.

BETH - So, one of the things that is meant to happen before Brexit is there's a festival called the Sick of the Fringe. You know more about it than me so tell me what it's about.

MARTIN- It's called Sick of the Fringe and it's a festival which is examining relationships between arts and health, illness, trauma. And the theme this year is care and destruction and the relationship between what it means to care for and to destroy something.

BETH - And what are you doing there?

MARTIN- I'm doing a discussion which is about the idea of making work that comes from your own illness autobiography, and particularly around ideas of trauma, making work coming from difficult experiences and what are the sorts of politics of that.

BETH - So, it's a bit like capitalising on your illness or your trauma.

MARTIN- Yeah. I guess one of the questions, what is the relationship between making something and ideas of exploiting and words like capitalising on your own experience; and I would totally avoid those kinds of words like exploitation or capitalising on something and say actually it's much deeper, it's about social justice, it's about relationships with illness and how that engages with other people or relationships with trauma and how you can engage with other people through your own autobiography, through your own story.

BETH - Because you always hear things, I don't know, even like on the Apprentice, you need your USP, your unique selling point, so it seems a good thing if someone can take advantage of what makes them different and make a living out of it or make art out of it.

MARTIN- Yeah, I think to some extent I agree, but I sort of avoid that sales bit, the terminology feels sort of crass to me. For me the best work is the ones that comes out of necessity and out urgency and the sort of fire inside you: you make it because you have to, not because you want to.

BETH - I saw something about you, you said you put yourself through these enduring things in a way to conquer your illness and take agency over it.

MARTIN- Yeah. For me I always say that performance is the place where I can own illness. For those of us who are sick or have any kind of disability it's often the experience of removal of agency or removal of ownership over our own body. We have to constantly submit to disease, constantly submit to medicine in order to stay alive; but it's also that process is removing us from ownership over our own body. And so for me during that moment of performance it's a way where I can be sick the way I want to be sick, where I'm totally in control of it. So, it's a place of ownership.

BETH - Who do you get in your audience?

MARTIN- It's really mixed and it depends on the context in which I perform usually. So, I have done quite a few things in medical context and those are always really interesting comments to get. Often the kinds of reactions I get from doctors is quite different, they're going, ah this is interesting teaching people what it's like to have cystic fibrosis - that's the way they read it; which is not necessarily what I think the work is totally doing but I can understand why that's what's important for them.

And also there is resistance to the sort of work I make as well because it is difficult and it's hard to watch and it's painful, so people don't want to engage with it.

BET - We talked about your friends and family earlier, what do they think of your art? Do they find it quite difficult to watch?

MARTIN- Yes. I'd say a lot of my friends are probably used to it and are artists. Family is an interesting thing and they're very supportive of what I do, and my sister has actually assisted me in quite a few performances. But it is difficult I think, particularly for my parents to see it. I think they don't really want to come and see it, although they are supportive from afar.

BETH - What's your next project?

MARTIN- I'm doing a project which will probably take place next March, part of a big research project around waiting times in the NHS, they've commissioned two artists to make work in response to it so I'm thinking about ideas of waiting, duration, the idea of chronic disease and what it means to be waiting within that context. And of course with CF there's a very different relationship to being in hospital spaces where the waiting room just doesn't function, and what's the difference between waiting alone, waiting in groups or waiting as communities.

BETH - And the fire hasn't gone out or your urgency to tell?

MARTIN- No it hasn't. That's what I was worried about, and there was a point where I hit 30 and I made this piece of work where I went, woah, what happens now, where does my work go. And now it's hit this point where all of a sudden a lot of ideas are starting to come back to me again. And I'm a zombie now rather than predicting becoming a zombie. [Laughs - end of interview]

BETH - So, there you have it: that's how you become a zombie. If you're interested in the Sick of the Fringe festival it's chock-a-block with events and takes place between 5th and 7th April at three London venues: the Camden People's Theatre, The Place and Welcome Collection, all on Euston Road.

As always get in touch with your thoughts on this or anything else Ouch related for that matter. We're BBC Ouch on Facebook, @bbcouch on Twitter, and email [e-mail]. Speak to you soon.