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In this episode Pete and Tristram talk with Priscilla Sutton about her life and how she has travelled the world with her exhibition ‘Spare Parts’ – an exhibition that brings together a diverse range of artists all using pre-loved prosthetics as their canvas.

Priscilla was born in Biloela, Central Queensland in the late 1970s. She was one of a cluster of babies born with health challenges attributed to the herbicide 2,4,5-Trichlorophenoxyacetic acid (2,4,5-T). This chemical is best known as one of two main components of Agent Orange, with the other being 2,4-Dichlorophenoxyacetic acid (2,4-D) which was also used in farming across Australia. She was born with heart, lung and vascular complications, as well as a missing fibula bone in her right leg.

At age 26, following years of increasing pain, Priscilla chose to amputate her right leg below the knee, and considers it the best decision of her life.

Priscilla’s current prosthetic leg has artwork on it provided by her favourite artist Mark Ryden and was made by Stuart Crampton at Leading Edge Prosthetics in Brisbane.

Priscilla is based in Canberra, Australia.

Podcast Duration: 30 minutes

Podcast Release Date: March 31, 2020

Produced by: Black Me Out Productions

Additional reading

Spare Parts is an exhibition that brings together a diverse range of artists all using pre-loved prosthetic limbs as their canvas. It was considered to be the first exhibition of its kind in the world, and was originally held in
Brisbane, Australia in 2010.

Limbs 4 Life is the recognized that amputees needed an organisation that provided up-to-date information and formalized peer support.

Priscilla on TedEx:

View transcript

Growing Bold with Art

Welcome to the Grow Bold with Disability podcast brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people disability care about most. To help us live bold, healthier, better connected lives.

I’m journalist Pete Timbs and I’m Tristram Peters. I worked for disability service directory, Clickability, and am a wheelchair user living with spinal muscular atrophy. Today’s episode of Grow Bold With Disability is Growing Bold with Art, and our guest is Priscilla Sutton.

Priscilla was born with heart, lung and vascular complications and missing the fibula bone in her right leg, which, along with a foot never really developed. That was attributed to the major component of Agent Orange. In this episode we’re going to discover how Agent Orange or the chemicals that were part of it affected her as a child. How a decision that Priscilla made at 26 years old changed her life and brought together a bunch of artists and spare parts that have since traveled the world.

Priscilla welcome to Grow Bold with Disability. Thank you very much. What a great introduction. You make me sound much more exciting. So, Priscilla, can you tell us a little bit about some of the chemicals that are associated with Agent Orange. And what effect did they have on an unborn baby? That’s a really great question. And I wish that I had listened more in science at school to answer that. But what I can tell you is that Agent Orange was has two main components. So 245 T, which is the component that was used in the area that I was conceived and born in. Um, and there’s another one called 2DT. I think it is 2DT something like that. I’m sure science people will write in and correct me. And it was also used in Australia. So 245T was a herbicide.

The other one was a pesticide and used in various farming areas. The one that I was exposed to was common in I think Queensland, Western Australia, South Australia, quite dry areas. A lot of cotton farming, that sort of thing, and we all know about the history books and what they have said about Agent Orange and the effect on people and unborn children and also generations of people born since the Vietnam War. But in my case, there was a cluster of babies. Um, leukemia I think was a bit common. An I was always considered pretty lucky. One of the luckier your kids in that cluster. And so with heart, vascular and bone conditions.

And I know that adhesions, especially on your abdomen, are another large side effect that a lot of people have experienced. I’ve read about different people’s experiences online. Um, and I’ve certainly had adhesions removed from my abdomen through surgery as well. So and I’m really great at growing adhesions and scar tissue. It’s one of my best skills. It is really difficult when they grow in an artery and block it. But I do like to look at the positive and I’m very good at it. It’s just really complicated. So yes, so I guess that kind of sums it up.

So there are, the effects can be quite wide, but heart blown vascular adhesions, cancer are really well documented side effects of being exposed to something like Agent Orange. So what did all these side effects mean to you growing up? Well, I guess do you know, I really didn’t know the cause of my disability until I was in my early twenties. And this is a funny conversation that I’ve had with my mom because I say I don’t know what you’re talking about Mom, you never told me this as a kid. And she was like, yeah, we did. And I said no. It was always, like maybe someone had a virus or something, you know? And I said it was all quite vague. And it was only in my twenties when she met an advocate for Agent Orange victims that she started sharing information with me and was it was quite a revelation. Um, but being born with all of this and I was in Central Queensland so I was born in a lovely little town called Billa Billa.

So it’s quite a small community, with not a lot of medical care. So we moved to Mackay, which was considered the big smoke, and they had a base hospital and a few things so. And even Mackay was pretty small, so every year of my childhood we would have to catch the bus to Brisbane to go to various medical appointments multiple times a year. So a lot of my childhood I remember surgeries and Greyhound buses, which were appalling in the eighties, and everyone could smoke on them which I think, ironically, was not a good thing for somebody with heart and vascular complications to be on, you know, like a 14 hour bus trip with like 80 grannies smoking the cigarettes. But that’s what happens in the eighties. Oh that would have been a sight to see and so you. It really was. It was disgusting. I bet, I bet.

And so you’re also in quite a lot of pain when you’re walking growing up, is that correct? Yeah, and it’s hard to describe so with my right leg, and it’s interesting you said Fibula cause I know that’s actually in my bio, but I need to update it because literally, in the last few weeks I discovered I do have a bit of a fibula which me and other people didn’t know about, and it’s because I’ve experienced some recent pain and we’ve been having X rays and MRI’s to work it out, and everyone’s like, What’s this bone? Because it’s like a fibula, but it’s not where a fibula should be so we’re calling it a fibula, but, you know, maybe a bone person might have a better name for it, so I’m not sure what to call it yet. But one day I’ll update that bio.

But my foot itself was born, if you put your palm out with your palm facing down, you put your hand out. Sorry. Palm facing down, and then your tip your fingers to the ceiling. That’s how my foot was born. So it was tipped upwards. They broke it to point down, not completely to the floor, but just tilted. So my ankle was about two and 1/2 inches different to the toe height. It was on a bit of a tilt and that meant I had to wear built up shoes and then eventually orthopedic shoes when I was about 11. And for the sake of it, I really wasn’t born with a fibula. I didn’t even know there is a random bone in there now but I can I have a small hand.

And if I put my middle finger and my thumb together, that’s about how thick my leg was. It was very, very thin. And underneath my toes, a lot of the pain I had was that when they tilted my foot, broke it and tilted it until they fused that ankle and under the toes, if you join your fists together, or join your hand together into a fist. I’m not very good at describing things today am I? I into a fist in your knuckles become pointy. Um, that pointy feeling is what it was like under my the top of my foot, so under the ball of my foot. So it was like walking on pointy knuckles.

And so I always describe the pain I had as bone pain, which opposed, as opposed to muscular pain, where when you’ve got muscular pain, you could do things like massage or rest. Or, you know, hot packs or whatever, all sorts of different things when it’s bone pain, it’s very consuming, and it can very much stop you in your tracks. And so for me there was a bit of muscular pain cause my leg wasn’t very well developed, but primarily the pain I had associated with this was bone pain. And it was when it came on, I used to describe that that was it for the day. I’d have to get to a taxi and get home because I couldn’t walk much further.

But at the age of 26 you decided there was something about this pain, didn’t you? I did. So ever since I was little. And I was on the Smokers bus the Smokers Greyhound to Brisbane going to all these orthopedic appointments. And, um and I had this same doctor most of my childhood, and a lot of people might relate to these. He had no bedside manner and he would just say stuff. So dry and blase, that would traumatize me and my mom and, um and he was one of many doctors actually, who had said since I was little, that my leg should be amputated. And my mom had always said no, that that would be my choice if and when I chose to do that.

So it was when I was 26 I was living in Tokyo. I was having this amazing life in my twenties living overseas in this crazy country. And if anyone listening has been to Tokyo, Tokyo is all about walking walking, walking, walking, walking, walking and then walking some more and then doing some stairs. Everything good is upstairs, and everything that you want to go to is a couple of kms between. So my my pain got worse, worse and worse and worse, immense physical pain. And I realized that I was having this great life. But my foot was starting to stop me. I was having barriers, you know, suddenly appeared before me literally and metaphorically like I was. I just couldn’t do the things I wanted to do and and I used to live a pretty easy walk home from the train station like it was a long walk, and in retrospect, there was probably a train that was closer to my house. But I never found it and I was walking home. It was like flat surface, really good foot paths and shouldn’t have been an issue and was walking home one night. And I remember just standing there in absolute agony, crying, wishing that a taxi would drive past, and I remember the street light was like this dull lamp and I just stood there crying, and I had that moment.

Oprah calls it an ‘Ah ha’ moment where you just go ‘Oh, OK I just have to change my life because all of these things were happening and my foot was starting to turn a little bit as well turn under’. And I thought, I can’t have this because if I’m going to end up as a wheelchair user anyway, maybe I should chop it off and start again. And then if that doesn’t work out and I use a wheelchair, that’s okay, But I’m gonna try, try my best.

So I 20 was probably 24 actually, when I decided. And then I moved back to Australia eventually and started to go through the process of finding a new doctor, cause you don’t just walk in and go chop it off boys, I’m ready. You know, it’s a whole process. So I think it took almost two years from that. Well, I don’t know if you heard that, but that’s some drama on the street and lots of horns. Um but yes. So it took, uh, took probably two years from that decision to the age of 26 when I finally had it amputated, my dear, old leg. And so tell us how you dealt with that amputation, tell us about the conversation you had with your leg. Yes. So, I mean, I’m a pretty optimistic person, and you know, I try my best to be really positive and do all the things you’re supposed to do. I was being very organized about everything. I’d signed the paperwork was on the wait least all of those things.

And then once I got the the letter from the hospital to confirm my surgery date and I a few weeks notice it kind of hit me, and I started to get really anxious. I was constantly stressed and I couldn’t sleep. All of these things were happening, so I went off to a psychologist pretty quick, and it was somebody who specialized in relaxation techniques, which is what I really needed because I was so anxious. And, you know, you have to remember you’re chopping off a leg, you know, it’s not gonna grow back like a bad haircut that will grow out. And I was kind of not doubting myself, but just, you know, shitting myself basically like, what am I doing? This is crazy.

So anyway, so she was amazing this psychologist, you know, and I talked about my fears and all of these things, and we did this relaxation exercise she was really into hypnotherapy too. And I’m a bit skeptical, but I’m pretty sure I went under this day and it was called, um, you know, talking to your body, listening to body. And basically she hypnotized me. And we had this whole conversation with my body where my leg told me that she was so upset with me that I had decided to basically chopped her off and throw her away and that we had achieved so much together that why would I do that to her? Why would I get rid of her? And I was absolutely bawling. And when I kind of came to like, I’d been sitting back on this couch with a cushion, I was soaked, the cushion was soaked, and I remember the whole conversation, but I don’t really remember saying it. So it was a really amazing crazy experience, and I know people think I’m a bit loopy when I talk about it, but it really changed my approach, and I was still anxious, and there was a lot of work to do.

But what I did decide was to go back to my surgeon. And he had said, you know, any issues, any questions, make an appointment, come and see me. So I did that and I went in there one day, and he’s like, have you changed your mind? I said, no. But I have made another decision and I said, I’ve decided I want to cremate my leg. Fair enough. And that was because of that conversation. Yeah. Yeah, that wasn’t all smooth sailing, though, wasn’t getting it cremated. No. And again, you know, because you can’t walk in and say chop it off. You can’t walk in and say I’m taking it home. There is so many annoying legislatio s, you know, all these health regulations in the way.

Sometimes people go oh, did you get to take your leg? And I did. But not in a jar. You know, it’s there are laws. So because for me that conversation leading to my decision to cremate was about, you know, actually, I don’t want my leg to be thrown out with the medical waste of the day. I love my leg. I respect her. She is a part of me and I want to make sure that she’s resting in peace. And I also did have this weird idea that maybe because it was a really cool looking weird foot, what if someone did take it and put it in a jar? And I never knew that would upset me so much? So when I went in, he was like, wow, I don’t know if we can do this. It sounds interesting. And I explained the whole thing, and it’s a form of closure to help with my anxiety that I’m feeling about throwing away this amazing part of my body that’s got me to where I am today and has helped shape my personality to my my whole leg has.

So the first thing my doctor did was ring the lawyers, right? Because that’s that’s the first question in any bureaucrats’ mind is, I better get legal advice. And he rang the lawyer in the hospital, he was the legal clinic and sorry legal office, I should say the council and rang them and said, so you know, I’ve got this young woman. She’s having her leg amputated soon, and he put it on speaker phone so I could hear the advice and she’s decided she liked to cremate it. But are we allowed to do that? Is that possible? And the lawyer just said, What is she nuts? And it was so funny because we all burst out laughing. And my doctor goes no and by the way, you’re on speak phone and she’s here. And it was so funny because the lawyer just was like, Oh, my God, she’s gonna see me. Um, but it was funny, because I have a sense of humor and and it kind of brought some lightheartedness to this really complicated situation. And I was allowed to cremate my leg.

But there was some rules, and this was Queensland health, who I subsequently worked for for many years. And I love to bag them out for this because they’re so bureaucratic. Um, so I was allowed to do it, but the funeral home had to collect my amputated limb within an hour of surgery. Otherwise it would have to be transferred to the morgue and I would be charged morgue fees, which would be thousands of dollars, and I was like, this doesn’t even make something sense. I can’t just eave it in a bucket under the table till they get there.

But you can’t, because laws, regulations, health department all this sort of stuff. And I guess, you know, I was like, okay, cool. Let’s see if this is possible and that’s how that process started, which was pretty fun. But then you rang around all these all these funeral homes, and they didn’t know what to do either, did they? No, they didn’t at all. It was I literally got out the Yellow Pages because this is a few years ago now. It’s 14 and 1/2 years ago, so Yellow Pages was still a thing. I think it still is, but no one uses them except prosthetic clinic. So I’ve got to say that’s the main thing, which we can get into later. But eh, so I opened it up and I was like, well, they say they’re a crematorium, so I’d never organized a funeral before. Thank God.

And so I rang them up. And said G’day my name’s Priscilla and I’m having my leg amputated soon I’m just and I’d like to cremate it. I’m just wondering how much that would cost. And I think I thought it was a prank call. And, you know, I, um and there was a really great prank call show on at the time, like a Comedy Central one about puppets doing crank calls. And it was really popular so, you know, they probably thought it was something like that, and and I said, No, no, no, this is for real. And they said, Okay, so trying to set me really seriously and I’m laughing because of who I am and I think it’s funny. Basically, we’ve never had this request before. What? We don’t know how much this would cost. I said, Well, I don’t know. This is your specialty. And I said, I guess do you go by size because it’s no bigger than a cat? And she laughed.

Basically, in the end we settled for the price of a cat, which was a few 100 bucks, and they were so kind they were so absolutely kind. I did have to go in and sign paperwork and take surgical paperwork to prove that this wasn’t a prank. And I still have this paperwork and you know, the it’s got deceased person’s name and I’m scrubbing it out writing leg of Priscilla and all of these, and, um, and laughing. And my friend was with me for moral support, and we were honestly, the two happiest people ever in a funeral home, it is a bit disturbing and they were so lovely on the day, um, a nurse called them for me, and my mom was the backup call.

They got there within the hour, saved me those morgue fees and cremated my leg. And a few weeks after I got out of hospital, I went back and collected my ashes, and I still have them to this day. So I highly recommend it to anybody going through, like an elective amputation, because as funny as, it actually meant so much to me emotionally to know what happened to my leg and that she is still with me. Um, it just means a lot because your body, especially when you’re in such chronic pain as much as your body, might drive you crazy. You also love your body so much because it has actually gotten me through every bad day so far. And even though today might feel like the worst day. Your body is so strong and actually just wants to do the best thing for you, and it’s really hard to throw that in the bin. Absolutely. It’s such a meaningful and creative way to get closure.

As you said, it’s your next creative endeavors that I’d love to our ask about next, when, in 2010 while working Queensland Health you stumbled upon another great idea. Can you tell us about that?

Yeah. So I actually worked in music for a really long time and then I realized I was just really poor and had no superannuation and just a cupboard full of band shirts. And I decided that’s what I went to work for Queensland Health and become a bureaucrat myself. And, um and it absolutely stifled my creativity. And I really missed working the arts but was really enjoying the income. So I decided I needed a side hustle. I needed a creative project. And the thought of doing anything in music made me throw up a little bit.

So also, I need something else. What what’s another art form? This is literally my thinking process and and then one day I was cleaning out my cupboard at home. And, you know, I was only five years down the track or four years, really, at this point of being an amputee. And yet I still had a couple of legs in the cupboard because as your activity levels increase, you get better feet. And as your stump shrinks through muscle wastage and, um, swelling and all of that sort of stuff, you get more sockets the bit that your stump goes into.

So, you know, I basically had legs in the cupboard that I didn’t know what to do with. And then I thought I’m getting to be a bit weird. I’m a leg hoarder, I cremated the other one. And now I’ve got these in the cupboard. And I didn’t want to throw these out, either, because they meant something to me. So I thought, I wonder if because I’ve got all these amazing creative friends. I wonder if one of my creative artistic friends could do something with them. You know use them as a canvas and I could hang them on the wall. Because that’s art. That’s not hoarding.

And you know, I had all these ideas and then the idea kind of grew, and I was at this exhibition with some friends and just chatting. And I have been mentoring a couple of people on event management. They were doing exhibitions, and even though I’d come from music, I knew the basics of event management, and I sort of was looking at them going, you know, I could do what they do.

Like, I don’t really know much about art, but I could give that a go and object exhibitions were really at the time like vinyl toys, skateboard decks where everybody got the same object and used it as their canvas. And I thought, I wonder if, I’ve got just a couple of legs In a few years, there must be heaps of people like me hoarding these.

Turns out that there are and we all hoard our limbs and I did a limb drive. I called it. I said, put this call out and asked. I used to see amputees in the street and be like, Hey, you got any spare and they did and I would go to their house and pick it up. I made so many friends through this and, um, and so and the powerhouse in Brisbane, a beautiful space. It’s ah, like a multi purpose art space. Ah. Took a chance on me through reputation of working in music and mentoring these other people through successful exhibitions. Um, yeah, basically took a chance and said, Cool. I don’t know what this is going to look like it, but it sounds wild. Let’s give it a go.

And the amazing curator there, um, Jody at the time, monitored me through the process and Spare Parts was born. And it’s such a silly name and it’s perfect for it because it is literally spare parts. Um, and I thought I’d be this crazy leg lady and no one would come. And it turned out to be really popular. Um, not just for, the general public who were really interested in prosthetics and kind of got to have a stare without being in trouble for the first time which I thought was great. Artists really loved it because it was so artistically challenging for a lot of people.

A lot of the artists got emotionally involved with stories of the donors of where the limbs came from, which was actually really heartwarming. Um, and but amputees and prosthetic wearers just felt so represented for the first time in media and in ah, and just in general and, I sort of I never expected this because I just really hated my job and wanted to do something fun to keep, you know, the blood pumping and my heart kind of alive. Um, And then suddenly I created this really open and positive conversation about amputee and prosthetic life that I never intended or expected.

So, yes, Spare Parts has been amazing. And then I, you know, had the opportunity to host a second exhibition in London during the 2012 Paralympics, which was insane and difficult and rewarding and expensive and life changing and all of the things you could imagine. Um, and an experience that completely shaped my future. It helped all of these exhibitions help me change my career back into the arts. And I started working in museums, which was great, um, and just opened my world up, and I met so many more people just like me, And it completely changed my life in so many ways.

Wow it’s been an absolutely amazing success. This whole thing, just born from this great little idea.

Now, Priscilla, in this podcast, as you know it’s called Grow Bold with Disability. We like to finish the podcast up with the question of you telling us what living bold means to you.

Oh, it’s a great question living bold. So it was when I started doing spare parts that I was. I met this young girl who was five at the time, and she’s a teenager now. God help me. I feel very old when I when I see her birthday photos on Facebook. Um, but she was five years old Little Zoe and she inspired me at the age of five to have colourful limbs because back in the day, it was a lot of blokes had Iron Maiden in legs, and kids had Dora the Explorer legs and women had really boring legs, and we were encouraged to blend in. And part of me loved that because I never blended in before. But then I realized that actually standing out is wonderful.

And now, since that time, so 10 years, I’ve had colourful limbs. I get artwork from Artists. I buy fabric from fabric shops, whatever it looks like and being bold to me is allowing yourself to shine. Don’t hide your differences. Um, I wear them proudly and own them because being different is actually such an exciting commodity in this very challenging times where we could all hide behind computers or robots, we could all be exactly the same.

But if you can just be that little bit different, you’re going to stand out, you’re gonna have influence, you’ll be remembered. And if you can be proud about your body and bold about your body, you might just inspire somebody like Zoe did to me to feel more proud about their body and their differences. Because there’s no reason why we shouldn’t be proud that we shouldn’t be bold, that we shouldn’t shine. Um, it’s 2020 and I just think, you know, be bold, be proud and shine.

Perfect. Amazing. That’s exactly the sort of lovely little Grow Bold analogies that we like to have.

Now Priscilla. Thank you so much for joining us here on the Grow Bold with Disability. Any of our listeners can find out more about Priscilla and also the spare part exhibition in the links provided in today’s episode shownotes. Priscilla, thanks again for joining us today.

Thank you. It’s been lovely chatting, and I hope lots of people enjoy my crazy stories and get to enjoy the artwork online as well.

Thanks Priscilla. Thank you for listening. And if you have enjoyed today’s episode then make sure you subscribe to the podcast Grow Bold with Disability. And if you like what you heard, then please take a few moments to pop over to iTunes and give our a podcast a quick rating so we can continue these conversations and encourage people to grow bold.

This podcast is brought to you by Feros Care a people care organization, committed to helping people live bolder lives. We call it growing boldly and for over 25 years Feros has been making it real for both older Australians and those living with disability. To find out more head over to feroscare.com.au

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The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.

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Curator of Spare Parts Exhibition Photo credit: Martine Cotton

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