He’s iconic and so is his art. Famed Canadian HIV-positive artist and photographer Joe Average in conversation with Bob Leahy
Bob Leahy: Hi Joe. Let's start off with your HIV story. Tell me first of all how long have you been living with HiV?
Joe Average: Twenty eight years.
Twenty eight years. Do you remember how you found out? How fresh is that in your memory?
It’s very fresh. I was at my doctor’s for some reason – I don’t know what – and we finished whatever we were dealing with and he said “hey, listen, can I get a blood test from you? It’s just kind of standard. We’re just testing everyone to make sure they are not HIV-positive.” And I said “sure”.
Did you think you would be positive?
I didn’t really think about it. I just thought this is something I should do – and I just did it. And then I can’t remember how long it was after, but my doctor phoned me up and asked me to come in and he told me. And my first response was “ OK, what are we talking here? How much time do I have?” And he said ”to tell you the truth, Joe, we don’t know. You could have six months, you could have years, ten years, you could live forever.” And I said to him “I’ll take that last one, please.”
(laughs) I love that. So once you’d processed that, how did your diagnosis affect you, Joe? Was it shattering?
Well, in a very positive way. I‘d been out of a job for a little while, wasn’t quite sure what I was going to do and finding out I was HIV-positive just made it very clear to me that I should start making art. It was something I’d done but never really taken seriously.
So had you sold your art before then?
It was the first time I thought of making a career out of it. I thought if I’ve only got six months left, how do I want to spend it? Do I want to spend it standing in unemployment line-ups, getting food stamps or whatever? I thought, no, if I put myself in that situation, I wouldn’t really have reason to want to live. So I decided to take a chance on art and I started to draw and I thought, just go for it.
Joe Average postage stamp.
I was approached by the organisers of the 2006 International AIDS conference in Vancouver to create the image for it. I chose a stained glass kind of feel for it because I wanted to show the fragility of mankind in the face of the pandemic. So I used four or five different faces in there, all different skin colours and genders and they are all kind of joined by the black lines and in the centre of it all there is a heart. It’s like we are all joined, we are all very fragile, just like the stained glass.
And right away you went for a pop art style. Your art is very whimsical - fun shapes, fun colours, fun imagery . . . .
I never really considered myself an artist because I couldn’t really paint like any of the masters, so I didn’t really take myself seriously, and then I discovered pop art. Pop art instantly visually appealed to me like crazy and I was a big fan of all the pop artists of the time. And I started to find out more about it and just fell in love with the whole movement. Plus the west coast inspiration of Haida art - it’s kind of like pop art in a way – you know, big bold colours and bold lines. In retrospect I can see that the two things steered me in to a direction that was uniquely my own.
Somebody called you "the Andy Warhol of Vancouver". What do you think of that label?
I’m an admirer of him. I’m a huge admirer of what he did, how he did it and everything and I don’t really feel I can live up to any of that, but of course with him being a hero of mine, it’s quite a compliment when someone says that.
I want to come back to the art in a bit, but first I want to talk about your treatment history. Because your treatment and your side effects have influenced in some ways how you have evolved as a person, right?
Basically your treatments ARE the way you live.
Tell me how many regimes you’ve been through.
Oh gosh, I’ve kind of lost track. When I was first diagnosed, my doctor suggested I start taking AZT prophylactically. He said my numbers were fine. And I did not want to. I saw too many of my friends dying while taking AZT. Everything about it just sounded horrible to me and I didn’t trust it. And so I did not take his advice. I was doing fine for years and then one year, all of a sudden I got really skinny and had a few little opportunistic things like thrush and molluscum. But then the very first cocktail came out. AZT, D4T and septra, I think? And so I went for that. And so I’ve been on cocktails ever since.
And what are you on now.
I can’t remember the names but I can go to my cupboard... (pause) OK the first one is Darunavir. And Raltegravir. Ritonavir. Etravirine. And Kaletra.
This is a very similar combination to what I’m on. So how is it working? Is your viral load undetectable?
Now tell me what that feels like. I think for many people getting to undetectable is a milestone. How does that feel.?Does it change things?
It feels comfortable and safe.
It’s been a hard road for you to get there. You’ve really had challenges with side effects, haven’t you?
Some of the nastiest side effects . . . I was at my doctor’s one day and I mentioned to him that for the last year or so I had feelings of a lot of rage, and I wasn’t quite sure why that was happening. “Oh you're on this drug, did they not tell you that this drug causes nightmares? Did they not tell you that the nightmares were not limited to the night?" So I went and talked to Julio (Montaner) and he switched me to something else. Because seriously I wanted to run over people on the street, I wanted to kill my cat – it was horrible!
My Thinking Cap
It was used for the AIDS Walk in 2007. I was sitting down in my little spot down on the beach one summer morning and I was just thinking about my first cocktail and realizing all of the things that had changed in my routine since my health started to change and I had my sketch book with me and I just thought I would try and sketch it out. It made me think of, in the butcher shop, you see the poster on the wall of a cow showing you what cuts of meat come from where. So I segmented my brain and wrote down the main components of it that are forefront in my brain as far as priorities go. Courage is there, at the back keeping it all together. My nose is made of a stack of the three pills that I was taking daily at the time.
This med sounds like Sustiva.
The other one . . , my nose was haemorraging constantly, not just nosebleeds but full-on shooting out of my nose, which I didn’t find all that odd at the beginning because as a child I had nosebleeds constantly. Being HIV-positive I learned that it magnified existing problems that you’ve had all your life. But it was getting out of control. So I stopped going to the gym because, you know, I’m a biohazard. I was worried that I might infect anybody.
Were you worried about what people might think?
I never really worried about what people think. I’ve always been from day one very public about being HIV-positive and I’ve used the celebrity I was getting as a way to be open about it and educate people about it, to try and take away some fear. In those days, as you know, people were very ignorant, and a lot of people still are, so I’ve never been concerned about what people think. I’ve always been concerned about other people’s safety around me.
My own nosebleeding spells were when I was on T-20, or Fuzeon. And you’ve also been on T-20. Now that was an injectable drug, and you had some pretty difficult issues to deal with while you were on that, I heard.
It was really horrible. I think I was the first guy in Canada to be on it. Julio arranged for me to get compassionate access and set up an appointment for me to come down to the hospital to learn about it. And so there was a couple of nurses waiting for me and there was a little table laid out with hypodermic needles on it. And I went “that’s not for me, is it?” And they said “didn’t anyone tell you?” And I said “noooo..” And right there on the spot I had to learn how to do it and in a second get rid of my fear of needles. I had brought a friend for support that day and she learned how to do it too and she volunteered to help me with the injections, because after a certain time, after a lot of injections in your abdomen, they don’t re-heal very fast and they need to be in your back. So because I don’t have a partner, my good friend Ann stepped up to the plate and agreed to inject my back. So we had a little thing going. She would come over at five in the morning and five in the evening and do it, you know.
Three Fingers Up. Photo by Jamie Griffiths. Photo manipulation by Joe Average with Jamie Griffiths.
That was my third day of T20 injections. So the three fingers up was to represent the third day. Lipoatrophy had started by this time and it was when I was working out a lot and I was 150 pounds. I had huge muscles. The hand on my face - I was psychologically just screwed up having to inject something in to my body twice a day. Every time I went in to a photo session with Jamie she said “just react how you are feeling today.”
I was petrified of needles. Did you ever overcome that needle-phobia in the end?
Well, I kind of had to.
But it was great to finally leave that drug. How did you feel about it?
Oh, it was the happiest day of my life.
It was like Christmas (laughs).
That was the most challenging drug I ever had to take.
I can relate to all that Joe. But you’ve also had issues with severe wasting or lipoatrophy. Where did that come from?
It happened through long extensive uses of anteretroviral drugs.
So that has had a major effect on your body fat.
I have no body fat. I have zero. Like tissue paper.
You’ve mentioned before that affected you to the point that you didn’t really want to go out. You had body image issues with being seen in public.
You know I’d walk in to a department store and security would be following me around because I looked like a junkie. Somebody yelled out on the street one day “I don’t know what you’re on, Joe Average, but get your act together”, thinking I was on crystal meth or something like that. One day a little girl in the supermarket with her mother pointed at me and said “why do you have holes in your face?” and her mother whisked her away from me in fear. So I could see what kind of reaction I was getting and so it was just easier for me to not go out in public.
Are you still feeling that way? You’ve called yourself a recluse. Are you still staying home a lot?
Well, I always have been somewhat of a recluse all my life, so it’s nothing new. But during that initial period of having a very skeletal frame - and the face is the most obvious – it’s all sunken in and you look emaciated . . .
You said you looked like Keith Richard on a bad day, or Iggy Pop.
Well, I absolutely love Iggy Pop but I wasn’t expecting to look like him so quickly.
(laughs) I like the way you turn your situation around and make fun of yourself.
Well you have to.
Clearly lipoatrophy has had a huge impact on your life and your mental state in the past. Have you been able to adjust to that, Joe?
You know, when I first started noticing the body fat disappearing and I guess I had been depressed for about a year and looking in the mirror, it occurred to me one day that instead of being depressed, why don’t you document the changes in your body and make art out of it. And so I approached a very good fried of mine - a photographer, Jamie Griffiths, and I asked her if she would document the changes in my body and we did that for a couple of years and five years later we ended up making a film about it . . So I kind of make art out of it. I’m kind of owning it now, you know. It’s like battle scars. I’ve gotten used to being 100 pounds, you know.
It’s very hard to put on weight, right?
It’s impossible. It doesn’t matter what I eat. When it first all started happening I hired myself a personal trainer because he told me that when the body fat was all gone, it would start eating away at the muscles and so I thought, well I want to give my body a fighting chance so how do I make those muscles big? And so I worked out with a personal trainer for six years and got up to 150 pounds, but then I kind of ran out of money. Within two months of stopping working out I went from 150 pounds to 130 pounds and then three months later I went down to 100 pounds.
And that’s where you are at now?
I’m cruising at a steady 100.
Now tell me – you mentioned your doctor is Dr Julio Montaner – a well known name. Tell me what he’s like.
He’s a great guy. He’s very straightforward. He really cares about me, he goes out of his way to . . . he always calls me his problem child, because I always became immune to the cocktail I was on before the next one came out. He tries to be very creative with me and he’s requested compassionate access for me from the drug companies. He’s just a great man. I am in extremely good hands.
Would you describe yourself as a good patient?
I’m a five-star patient. I do what I’m told. And I trust Julio.
Tell me what you do to take care of yourself.
I don’t work out anymore. My finances have been extremely poor so there is a wonderful organization here in Vancouver called The Loving Spoonful and they have been feeding me, off and on, for three years. My food intake is enough - I do eat.
Are you a lonely man, Joe? At times you’ve talked about being lonely.
Well, I’m alone all the time, but I really don’t feel lonely. You know, I’ve been like this as a kid. I’ve always been the runt of the litter, the one everyone picked on, make fun of, whatever. So I’m very used to the lifestyle of being alone.
You don’t have a boyfriend.
Oh god no. I’m just not interested. I’m not interested in sex anymore. They had me on testosterone injections for ten years and during that time I developed a whole pile of unexplainable medical problems that nobody seemed to be able to figure out what was causing them. And I got so fed up with nobody helping me I started researching it myself and found that testosterone was the culprit and so I took myself off it. And every single problem that had bothered me all magically disappeared. My doctor had had me strung out on testosterone so when I went off of it it was rough . . and I lost all interest in sexuality and I was kind of panicked by that. But now I’ve got to tell you, it’s such a relief not to be sexual. Oh my god, this is so much easier.
So what do you do with yourself most of the day, I know you are on Facebook a lot. What do you get out of Facebook?
Facebook – photograph by Jamie Griffiths
This is how I look now. My hair is all very long now. I really like that photo. I was outside and my pigeons were flying around me and Jamie grabbed my camera and said “don’t move.”.
Well, Facebook has been a really great tool for me. I guess I started doing my photography a couple of years ago and I would just start putting pictures on Facebook and the feedback I got was great enough to make me think I could continue with photography and so I have gained a large loyal following there, and it’s been great. You know I resisted the whole Facebook thing for so long because I’m not a very social person, and the social network thing is so not me. And then some friends got me to sign up and then I discovered you could post music and photographs and it’s been great. Once a year I have a great Christmas sale of art prints and stuff. The last two years, Facebook has been my only way to advertize, for lack of finances and stuff. Facebook has been a better advertisement than any newspaper ads I’ve taken out or anything. It’s a great tool and now I’m advertizing my new website on it.
Let’s talk about your art. You’ve probably been asked this many, many times, but let’s do it. Why is your name Joe Average?
When I was a teenager in Victoria, I was very enamoured by a collective group in Toronto called General Idea, and also a collective group of artists that hung out at the Western Front in Vancouver. And everybody in those groups of artist also had wild aka’s. So many great aka’s and I kind of wanted one. I played around with a few for a while and they didn’t quite fit me. And one night I was with an artist friend and we were sitting drinking some wine and going through this box of old magazines we’d found in an alley, old 50s and 60s magazines – and every once in a while I'd run across a piece of clip art of the Chevron Man, The Milkman, the Policeman, all average Joes, and we were flipping through . . I want to say “average Joe” and I said ”Joe average” by mistake. We both started laughing and then we stopped and looked at each other and said simultaneously “That’s your new art name!”
And it stuck.
Well, it fit me so well, because you know a wild crazy name didn’t suit my personality, because I wasn’t a wild and crazy person, just a little shy artist. Joe Average seemed kind of perfect for me and the flip of the word from average Joe to Joe Average, because of my dyslexia, just seemed extremely funny and appropriate. So I went out the next day and got a rubber stamp made and started stamping everything that I did "Joe Average".
And then you became famous.
Yep, and when I quit drinking and started to make art a career I decided to call up the telephone company and said I would like to change my listing from Brock Tebbutt to Joe Average and she said “we don’t print aliases in the phone book”. And so I said “it’s not an alais, it’s my art name”. “If you want your name changed you have to provide a birth certificate.” So I called up a friend of mine who was a lawyer and asked how much it was to change your name and it was about $150, so I changed my name.
Have you enjoyed being famous?
Well, it was kind of exciting for me. It was new and gave me the opportunity to meet some pretty incredible people. Fame is kind of a double edged sword thing, you know. But you figure it out as you go along, but it’s kind of nice to know that your name will be remembered, especially if you don’t have offspring. So I kind of think my name and my paintings and my photographs to be my offspring, you know, the things that will carry my name on.
Were you able to make a living out of your art?
I have been surviving on my art since that day I made that decision when I was thirty years old.
For a while were you earning a really good living? Were you living high?
For a little while, yes. But then the big recession happened, people just stopped buying art.
Your art - or some of it - became quite connected with HIV. Were you consciously producing HIV art for while?
Goodness no. There are a couple of paintings which are about HIV but it was never the main focus of my art. I just like making happy things and my little brain thinks if I make happy things, I’ll be happy.
But you were always known, I think, as an HIV-positive artist.
Which I always found to be an extremely weird title. But I was comfortable about it for the same reason that I’ve been really public about HiV.
Tell me why you stopped painting. When was that?
In 2000. It was the beginning of my depression. I wasn’t just giving it up, I just didn’t feel like I had it inside me to paint big cartoon eyes and sofa sized lips anymore. I mean I was smart enough when I had money to invest in having reproductions of my art made, so it didn’t mean I had to stop selling art. I had a pretty good selection of prints that I knew would keep me going and I kind of knew in the back of my mind that at some point I would have something else to do. And then I picked up the camera.
Do you miss painting?
Nope. And you know what – I shouldn’t say no so quickly – there were certain joys in painting. Going through all my paintings and putting them on my website, I remember painting each one and, you know, there are kind of sentimental feelings there. One of the great things about painting is that when you’ve finished all of your paintings and line them up on the studio wall, and you take a look and you go WOW! I kind of miss those moments but I’m kind of getting those moments back now when I take a great photograph.
Tell me why you decided to pick up a camera.
In my teens and early twenties I took a lot of photographs. I actually had a little dark room and was very in to it. In my mid twenties my camera was stolen and I could never afford to replace it and so I didn’t take photographs for ages. Then three or four years ago I got a rather large amount of money to use one of my images in an ad campaign, and so I allowed myself one present and I bought myself a digital camera for the main reason that I wanted to have it as a tool. I wanted to be able to do self portraits. And so I got the camera and I was a little intimidated by it for while because I hadn’t used a digital one. Jamie came by and programmed it for me, then I started shooting.
You’ve taken a lot of photos of birds.
I live in a little penthouse on top of a three storey walk up and I have a very large deck and I have a menagerie of birds that visit me. Some of them just live on my roof and they’ve just got to know me. The young seagulls that were born here allowed me to get six inches away from then and photograph them with my macro lens and photograph their knees, their eyeballs. . .
Yogi’s Feet (photograph By Joe Average.)
It’s my favourite photograph. Yogi is the name of the bird. He was a little baby I watched grow up and he became very friendly with me, visited me every single day and would stand on the rail of my deck and was so friendly, he was my buddy for a year. He’s gone away now.
You now have a new website with a lot of your work for sale.
Yes, the two main things about this website are showing my photography and also introducing over thirty new images, paintings that were never available as prints before but are all available as prints now. So instead of having ten prints available I now have over forty prints available.
Great! We’ll provide the link to that. You’ve been very generous with your time, Joe, but I just wanted to ask you a few more questions about HIV. Do you follow HIV issues - or are you “over “HIV? Some people are now.
I’ve had a philosophy right from the beginning - so many people I know, once they got HIV, just made everything in their life about being HIV-positive. I saw too many people immerse themselves so much they actually made themselves sicker. So I made a conscious decision to remain ignorant but still be responsible. I do not watch the news, I don’t even have a television anymore. So I don’t really know what’s going on right now. The only thing I do know, which has been a thorn in my side, is that I’m upset with the media - the message is that you can live a long and healthy life on the meds. And so kids are going out and barebacking all the time, just not being afraid of it. People stopped being responsible. So what I wanted to tell them was that with that long and healthy life comes all those side effects. It’s a full time job. Just because there are good pills out there doesn’t mean that you want to become HIV-positive.
You are a long term survivor. Why are you alive when so many people from your era haven’t survived.
God, if I knew the answer to that, I’d bottle it and sell it. I really don’t know. I like to think it’s because of the decision I made at the very beginning which is to put myself in to a situation where I would WANT to live, you know. Which is making art. So becoming a legitimate working artist has, I think, a lot to do with it.
Choosing to live – that last option your doctor gave you – is a big part of the puzzle sometimes, I think . .
To get yourself in to good situations and to be positive about things as much as you can. If you get a defeatist attitude, your brain is a powerful thing. If you think you are going to get sick, you are. If you think you're going to live, you’ll probably live.
All images copyright Joe Average, used with the permission of the artist.
Joe Average art website http://www.joeaverageannex.com/
- Tags: AIDS, August 2102, B_C_, Facebook, HIV+ HIV-positive, interview, Joe Average, pop art, PositiveLite_com, Vancouver, website
About the Author
Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com publisher Brian Finch. He joined PositiveLite.Com at its inception in 2009 and became it's Contributing Editor a year later.
Born in the UK, Bob’s background is in corporate banking, which he gladly left in 1994, after being diagnosed with HIV the previous year. He has chaired the board of PARN (Peterborough AIDS Resource Network) and has been an executive board member of both the Ontario HIV Treatment Network (OHTN) and the Canadian AIDS Society (CAS). He was inducted in to the Ontario AIDS Network’s Honour Roll in 2005. Bob is currently a member of Ontario’s GMSH (Gay Men’s Sexual Health Alliance). He also writes for TheBody.com.
In 2012, Bob was honoured with the Queen Elizabeth II Diamond Jubilee medal for his work and commitment to HIV/AIDS in Canada.
Bob continues to write for this site while in the Positivelite.Com editor’s seat, with a particular interest in HIV prevention, theatre and the arts in general. He is accredited media for a number of Toronto theatres. He lives in Warkworth, Ontario with his partner of thirty years and three dogs.