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[Theme]

HARVINDER WADHWA: People are curious, and that's great.

ELENA HUDGINS LYLE: But there are some questions you just shouldn't ask or at least not like that.

HARVINDER WADHWA: I'm Harvinder Wadhwa.

ELENA HUDGINS LYLE: I'm Elena Hudgins Lyle.

HARVINDER WADHWA: And this is Inappropriate Questions.

ELENA HUDGINS LYLE: Let's get inappropriate.

[Music]

ELENA HUDGINS LYLE: Harv, it's show and tell this episode and I brought you something.

HARVINDER WADHWA: OK, I am intrigued.

ELENA HUDGINS LYLE: Take a listen.

[Music]

JULIANNA ROMANYK [singing]: My mind plays tricks with me on the daily. The only thing I can count on is it messes with me unfailingly. And I don't know. And I don't know. And I don't know. And I don’t know, if I'm right to be. And now I don't want to tell you how I am feeling.

HARVINDER WADHWA: This is lovely. What is this?

ELENA HUDGINS LYLE: This is my friend Julianna Romanyk, and she's a really great songwriter, composer, pianist. And aside from just being really cool, she's with us today because she's the person who got me interested in making an episode about the question “what happened to you?” being asked to amputees.

[Music]

HARVINDER WADHWA: Hi, Julianna. Very nice to meet you.

JULIANNA ROMANYK: Thank you so much. I'm glad to be here.

ELENA HUDGINS LYLE: What's a time that stands out to you that you've been asked this question?

JULIANNA ROMANYK: I don't think of one specific instance as much as I just think of how the weight of it, it's like, more like a gradual, constant burden. And it's like instead of being asked, like, “hey, how are you today?” People will ask me “what happened to you?” before it's even like, “hey, how are you?” And it's like over time, it really weighs you down because you don't feel like you get to be a person first, you feel like you are your explanation of your disability before you are a person.

HARVINDER WADHWA: So, Julianna, before we go any further, just describe because our listeners are not able to see you.

JULIANNA ROMANYK: Yeah.

HARVINDER WADHWA: So describe yourself.

JULIANNA ROMANYK: Yeah. Even if they could, they'd see above the shoulders with Zoom technology. But yeah, I have four fingers total, so I have one finger on my left hand and I have three fingers on my right hand. It's been that way since the dawn of my existence, don't particularly know why I am missing a bunch of fingers, but I just am. And this seems like my static and natural state to me. So to be confronted on a daily basis, or not daily but frequent enough basis, where people go, "oh, why?" it's like, I don't know, it's, it always was to me. So it's kind of funny.

HARVINDER WADHWA: I would like to understand that when you were a child, it must have been a little harder on you because A) children are very insensitive. Did kids ask you what happened to your hands?

JULIANNA ROMANYK: Yeah, I mean, the strategy that my family had was basically get ahead of it. So the first day of school, when you arrive at school, you do a presentation and you kind of go, look, I have memorized the speech my whole life and given it frequently.

ELENA HUDGINS LYLE: Oh my God. Oh no!

JULIANNA ROMANYK: Yeah. Basically the speech goes, someone asks the question, the classic question, "what happened to your hands?" And I go, "well I was just born that way, just like you were born with your combination of things like you might be born with light hair or dark hair or you might be born tall or short. Everybody's born different and I just happened to be born with this difference. And, you know, it's OK because I can do everything that you can do. I can write and I can draw and I can use scissors and I can go play on the playground and I'm perfectly fine. So you don't have to worry about me. And I want you to just let me be myself."

ELENA HUDGINS LYLE: Please chill.

JULIANNA ROMANYK: Yeah, basically please chill. You guys are panicking for basically nothing and then that would kind of get ahead of it or so I would feel. But at the same time, having to go and introduce yourself like that, it's like nobody else had to do that speech. Like everybody else's differences were slightly less obvious. And so nobody had to announce themselves like, “hey, I know I'm weird, everybody, but here's why you should be OK.” Like nobody else had to make that speech. So even though in the long run, I guess it avoided bullying, and I really didn't get bullied so shout out to that. But I, I also feel like it did instill like the sense of like you are very weird from a young age.

ELENA HUDGINS LYLE: No!

HARVINDER WADHWA: So Julianna, what is that about this question that bothers you?

JULIANNA ROMANYK: I feel like it's the same as someone like pointing and gasping, but it's just in words like it's just someone going, "why? Oh no!" like but in what they think is a polite way, but it feels almost identical. It's like a verbal form of gawking where they kind of go "why is it like that? Oh, no!" Like it's a kind of shock based, impulsive reaction rather than one based in, like compassion or even just waiting a minute to see, like, who I am, because literally, if you talk to me for five minutes, you'll know I'm pretty OK, and you don't need to be concerned and I will sarcastically set you straight so—

ELENA HUDGINS LYLE: I mean, as your friend, I would like to protest you being OK. I can talk about all the cool things about you, but I will refrain.

JULIANNA ROMANYK: I think that is why I do try to be more like a competitive person, because it's like I want to prove that, like I'm not only capable, I am super capable. And therefore, if you ever dare doubt me, screw you. Like I will, I will prove you wrong. It's in a way, playing piano is a bit of a defense mechanism because it's like an instant proof, like, oh, like everyone goes up to me and says, "oh, I can't play piano and you can play piano." And then there's like instant mental switch of like, oh, she can do like probably a lot of things, you know what I mean.

[Music]

ELENA HUDGINS LYLE: Before the world went all pandemic, one of the last things I did in person was go to see a comedy show with you and the host of the evening was a Toronto comedian who's been asked what happened to her a lot. And she often starts her sets talking about her awkward interactions with strangers.

JULIANNA ROMANYK: Courtney Gilmour, my girl, she's so good!

SOUND CLIP: [Courtney Gilmour performing stand-up] Thank you so much for having me. My name is Courtney. I can, I know some of you at the back can tell just by the sound of my voice that I don't have hands. You know, gives me away every time. But I was born like this, so it's fine. Like, I feel fine about it. I'm having a good no arms year, it's OK. It's all OK. I'm saving on scissors. It's great.

ELENA HUDGINS LYLE: Courtney, you tell a lot of stories in your comedy about the question, "what happened to you?" and some other things you've been asked to, do,you want to tell us what are your favorites of these stories?

COURTNEY GILMOUR: My favourite "what happened to you?" I mean, and I talk about this a lot in my comedy, but cab drivers are like the number one. Cab drivers, Uber drivers, people who are just isolating me in a car love to, love to bring up personal subjects in an enclosed space so they can't, you know, exactly escape the conversation. But, yeah, there's like "what happened to you?" but also just like the follow up tagline of I know someone who has back problems, therefore I understand that you're an amputee and you don't have hands. And so my sister has back problems, is probably my favourite, you know, follow up tagline to the question "what happened to you?"

ELENA HUDGINS LYLE: Like you kind of alluded to, do they expect you to have some traumatic story behind it?

COURTNEY GILMOUR: Yes, I do think that most of the time they expect a story, like they expect a really long, tragic event. And the thing is, that is not what my case is like. I was a, I'm a congenital amputee, meaning I was born missing my hands and my right leg. And so there was nothing, like, too dramatic to get into. But, you know, I do know amputees who do have stories of like accidents or illness and such and so why are you so comfortable approaching me, assuming that I want to, like in this moment, discuss potential trauma or tragedy? You know, that's so interesting to me, you know, and like we're in the middle of a Loblaws grocery store or in, you know, in the cab and you feel very comfortable asking this question I'm scared to know what else you're comfortable with asking, you know?

HARVINDER WADHWA: Courtney, is it also that some people when they ask this question and then they get a little embarrassed and just to make you feel good, they maybe say, "oh, you know what, my sister has a back problem"?

COURTNEY GILMOUR: Yeah, I do think people are trying to be relatable in a sense, like even if in my mind that's not at all relatable. To them, I think they're trying to throw something out there. Yeah, I think you're right. You know, trying to backpedal a little bit once they realize that, oh, she was born this way so I better create some common ground here so that this doesn't get super awkward, you know, more than it already is.

ELENA HUDGINS LYLE: How do you tend to respond? Do you ever, like, make something up and just try to play with them and see how they react?

COURTNEY GILMOUR: Yeah, well, that's the thing is like say you feel like, oh, I'm going to be funny about it today if someone approaches me, but then you know, you're living your life and sometimes you're not having a great day and you don't feel like being funny. And so sometimes I'll just shut right down and just be like, "you know what, I honestly don't want to talk about it." I'm not like your public educator 24/7.

HARVINDER WADHWA: But do you feel at times pressured into telling your story just because you want to be, even though inside you are not in the mood, but just so that they have a certain impression about you?

COURTNEY GILMOUR: Yeah, there's a lot of pressure on people with disabilities to feel like they're responsible for educating the general public and feel responsible for representing their community, you know? And that'sI feel very conflicted about that sometimes because, yes, as a comedian, I do have encounters that are funny and are useful for my comedy. But, you know, there are lots of amputees who are not, you know, mining for jokes in their daily encounters. They just want to live their lives, you know, and as I said, sometimes I'm having a bad day. And, you know, someone comes up to me in the subway station and says something weird, like, "oh, you know, I think God is going to give you hands one day." And I'm like, "I don't know, I'm 37. Like, it's been a long time. I think he would have done it by now if that were the case. But I think that window has passed." How much of this falls on me though to personally, you know, make sure that someone is educated? Is that my emotional responsibility to justify my existence, you know, on a daily basis? So I do struggle with that. I don't know if I have a clear cut answer because I definitely want to be the type of person who is an advocate for the disability community. But I think there are certain platforms that allow for better dialogue and discourse about that rather than the back of a cab.

HARVINDER WADHWA: So I have two questions. One is your day to day life, how this disability has impacted you and the follow up question is that, okay, now you are 37 and by the way 35 was the age where if God wanted to give you hands that was the cutoff, 35.

ELENA HUDGINS LYLE: Does God have a direct line to you, Harv?

COURTNEY GILMOUR: I missed the boat then.

HARVINDER WADHWA: So and the second question is, I want to know about your experience while you were growing up.

COURTNEY GILMOUR: Those are great questions. Well, I mean, on a day to day basis, my life sort of reflects how my upbringing was with my parents. So, you know, as I mentioned, I have always lived my life without hands or a right leg. And so to me, it's my normal. And I really have always appreciated the approach that my parents took, which was just to assume that I can do most things on my own unless told otherwise.

ELENA HUDGINS LYLE: Right.

COURTNEY GILMOUR: As a result of that, I've just always been a person who really values her own agency and like my independence has blossomed almost to my own detriment where I'm very stubborn. I actually find it a little bit hard to ask for help because I figure like, no, like if I'm opening a jar of peanut butter and it's really, and the lid is on really tight, I'll spend 45 minutes just trying to do it, whereas my friends are staring at me like just let us do it please. Like we know, we know you’re, we know you're a strong independent woman, we know you can do it, but like you're torturing us by making us watch this for a long time.

HARVINDER WADHWA: So just to give you a little bit of myself there, that if I just cut my finger, it's a paper cut. I'm not even talking about cut with a knife, then I expect to be served by my whole family, not just—I go to the bed and they bring the tea and then the food and everything and I need a good rest for a few days.

ELENA HUDGINS LYLE: Oh my god.

COURTNEY GILMOUR: I respect that, I respect that you know, like I'm a I'm a princess as well, you know. You got to do what you gotta do, you know.

ELENA HUDGINS LYLE: Given that you're so independent, I'm wondering if other people often see you as an inspiration. I've heard about how the way we see people as inspiring for living with a disability, it can actually be a pretty negative thing.

COURTNEY GILMOUR: Yeah.

ELENA HUDGINS LYLE: I've heard it called inspiration porn, I think is the word. What are your thoughts?

COURTNEY GILMOUR: Yeah. So inspiration porn is a term that's used to describe the narrative of disability within the context of objectifying a person with a disability and using them to boost yourself or boost society. You should you know, like you'll see a lot of inspirational quote, you know, a caption of an inspirational quote underneath a person with a wheelchair and being like, you know, “the only disability in life is a bad attitude,” “the only thing holding you back is you” or stuff like that.

ELENA HUDGINS LYLE: Right.

COURTNEY GILMOUR: And think about how that person now has to go out into the world and live their life as a person with a wide range of emotions and if they express any of those emotions that are contrary to being inspirational or positive all the time, they're doing disability wrong. Tou know, because they're not inspiring you and they're not being positive, they're not looking on the sunny side of life. Therefore, they're doing disability wrong because you saw that poster and that's how you think of them now as someone who represents that mentality. And it's, that's another aspect of it, too, is it makes it seem like people with disabilities have to just look at life glass half full all the time and not be angry about it and not be angry about a system that oppresses them.

HARVINDER WADHWA: You've said it so well.

COURTNEY GILMOUR: Oh good.

HARVINDER WADHWA: You said it so well, because most people who are putting out these motivational things think that they are being altruistic when it's pretty much the opposite.

COURTNEY GILMOUR: Yeah, I mean, I remember I was in a subway station a few years ago and a guy I think I sort of lightly referenced this earlier in the conversation, but the guy did come up to me and tell me that "God is going to give me hands some day" and that was the wrong day to talk to me. And I said, "you know what, I don't appreciate that you said that to me. I find that very insulting." And he got really angry at me. He was very, very livid. It was like he was shocked that I could respond in such a way that is so opposite to how he thinks I present myself. And those moments tell me, you know, they illustrate for me how damaging those inspirational narratives are because I'm the one who has to face them every day with strangers, you know, out and about in the world.

ELENA HUDGINS LYLE: Hmm. So do you think "what happened to you?" specifically asking this to an amputee? Is that an inappropriate question?

COURTNEY GILMOUR: Yes. Yes, it is.

ELENA HUDGINS LYLE: Boom, we got it!

HARVINDER WADHWA: But then what would be appropriate? OK, I will say that people should keep their mouths shut and that's what I have learned. If they are very inquisitive, they can Google everything.

COURTNEY GILMOUR: You can Google. And I would ask yourself, just know first of all, I get it. I understand that impulse, but ask yourself why you're asking me that and what it is that you feel you need from me to justify why I am the way I am. Because ultimately, it doesn't matter what happened to me and are you prepared for me to tell you something very traumatic? Because you might be emotionally triggering me if something traumatic happened to me, a very horrific accident, do you want to A) trigger me and make me feel like now I have to tell you that and do you have the time to sit down and listen to it, you know? Like ask yourself these questions: what do you think about disability and why is it so different to you? And so that my difference warrants a question like "what happened to you?"

HARVINDER WADHWA: Regardless of what the answer is, how is it going to benefit you?

COURTNEY GILMOUR: Exactly. Exactly.

HARVINDER WADHWA: How is it going to change your life?

COURTNEY GILMOUR: Exactly. And it's not, you're not just by default entitled to someone's story, you know.

ELENA HUDGINS LYLE: Right. And I guess, like you said earlier, it might not even be, they might not even get the story that they're looking for.

COURTNEY GILMOUR: Exactly.

ELENA HUDGINS LYLE: Because your truth might be something completely different.

COURTNEY GILMOUR: Yeah. And then how weird do I feel now that I didn't give you enough trauma? Like that's so weird. Like this is what true crime documentaries are for, you know, like not me.

HARVINDER WADHWA: Courtney, people who know you, who are your friends, if they want to know a little bit more about you, what would be an appropriate question to know you better?

COURTNEY GILMOUR: Any question that puts the emphasis on “is there anything that I can do to enhance your experience as a person with a disability in this world?” Because then that opens up the conversation for me to be as detailed or not detailed as I want. But if you ask "what can I do as an able-bodied ally to make this world a more accessible place for you?" that's a perfect question. That really opens up the discourse for us to actually have an engaging conversation that doesn't make me feel exploited.

HARVINDER WADHWA: Or even pity?

COURTNEY GILMOUR: Yes, exactly. Exactly.

ELENA HUDGINS LYLE: Yeah, it's kind of about them helping you more than them taking information from you.

COURTNEY GILMOUR: Yes. And how to be an ally, not just to me, but to people like me. So it's not just about me. You know, there are things that you can do and if you take interest in that, I think that's a really positive step forward.

[Music]

ELENA HUDGINS LYLE: So far, our guests have been amputees since birth and have lived with these experiences their whole lives. Some amputees have their amputations later in life for different reasons, which can make answering this question "what happened to you?" a bit more complicated.

KERRY BENJOE: My name is Kerry Benjoe. I live in Regina, Saskatchewan. I am a First Nations woman and I'm a recent amputee.

ELENA HUDGINS LYLE: She even has a cool name for her prosthetic leg.

KERRY BENJOE: I named him after Tom Hardy because, you know, because it's Tom Hard. I figured that my prosthetic is going to be my life partner. And I was like, well, if I'm going to have a life partner, it's you know it's just like a fantasy thing, and it really helped me accept my leg and not see it as something ugly. So I attached something I find attractive and beautiful to it. So it's Hardy and he's gold.

ELENA HUDGINS LYLE: Kerry spoke to me about how she uses this question to open up important conversations. Just as a heads up, Kerry talks about her experience with domestic violence in this next part. So in only as much as you want to share, can you tell us about your amputation and your story with it?

KERRY BENJOE: It's kind of lengthy, but it was the result of domestic violence. It was with my former partner. We had an argument. I was walking away. He took a running shove and he shoved me from behind. And I, I don't know how far I flew, but I remember watching the countertop fly past me so I was airborne. Automatically, human instinct you try to break your fall. And I didn't have shoes on and I tried to stop myself and I landed my full weight on my left foot. And I could hear a, you know, when you snap your finger in an empty apartment?

ELENA HUDGINS LYLE: Yeah.

KERRY BENJOE: Like when you're moving in, it's like echoey.

ELENA HUDGINS LYLE: Yeah.

KERRY BENJOE: It sounded like that. It's just like, I heard this really loud sound. He knew he hurt me right away because he jumped down on the floor and he was holding me and I was still determined to leave. So I got up and I was wondering why I couldn't stand up. I thought it was my knee and when I looked down, my foot was facing up. And I did see a doctor and he said it was broken and they put me in a walking cast and all that stuff, but it didn't heal properly and so it was broken for like three years. It was essentially a dead foot and it was slowly sucking the life out of me, like the pain for four years, like there wasn't a night that I slept the solid eight hours. It hurt like it was painful walking. It was painful doing anything. I was just so worn down that my body just couldn't take it anymore. And finally in 2018, I went in the hospital on October 30th and they all came back with the same prognosis, they could save maybe part of it. And then they said I would still be living with pain, I would have continuous surgeries and I asked them like what about the pain. I was like "is there any way to get rid of the pain?" The only option was amputation. Amputation would be my best bet to get my life back to normal. And so I laid in my hospital bed. I cried. I did cry. For me, I loved my legs. It was like my favourite part of myself. Like, I remember when the plastic surgeon was talking to me and telling me how far the amputation would be in and I find this funny now, but the first thing that popped into my head was, "can I still wear boots?" And he was like, "yes, you can still wear boots." And he was rubbing my back. And I was like, "okay, okay."

ELENA HUDGINS LYLE: Life will be good. If I could still wear boots, we got this.

KERRY BENJOE: Yeah, basically.

ELENA HUDGINS LYLE: Nice.

KERRY BENJOE: That's like, okay, well that's a glimmer of my normal life. And I made the decision by myself because I realized that the journey I'd have to take would be mine. I didn't want anybody there trying to convince me to keep my foot because I wanted to just think it through logically. And every scenario, amputation seemed like the only answer.

ELENA HUDGINS LYLE: Right.

KERRY BENJOE: And so I did. I went through this surgery and I woke up and I wasn't in pain and I kept waiting for that pain to come back and it never did. I think I slept a solid two days. They just wake me up to check my vitals and feed me and that was such bliss, you know, to just sleep. Having that rest, I knew I made the right decision and I decided that I wasn't going to let anything, no matter how difficult, ever make me look back at my decision as a wrong decision. Because for me, it was, it was right for me. And so I have no regrets about that.

ELENA HUDGINS LYLE: I'm so glad the pain stopped. That must have been. Yeah, definitely a difficult decision, but I'm so glad it was the right one.

KERRY BENJOE: Yeah.

ELENA HUDGINS LYLE: I read your piece that you wrote about your story in Eagle Feather News in Saskatchewan. And the line, I think it's the last line, that stood out to me was that you say that you wear domestic violence where the world can see it. What is it like to have, you know, that part of your experience, you know, not everyone who sees you knows what you just told me, but what is it like to have that be a visible part of yourself?

KERRY BENJOE: I use it as an opportunity to start the conversation about domestic violence, because I think for a lot of people, including myself, it's a topic that I ignored. I didn't want to hear about it, I didn't want to talk about it. And I just, being silent didn't help. So it's not that I want to shock people, but I want people to know the extent of what domestic violence can do to a person. Like so many people, where there are victims and they can go out and no one sees their scars, whether they're emotional or mental. They could be physical, but they're hidden so that no one sees them. I can't do that. It's there. And so rather than, you know, making up a cute little story about what the reality is, I decided to just be honest.

ELENA HUDGINS LYLE: And from there, like, how do they react?

KERRY BENJOE: Some people are a little taken aback by that.

ELENA HUDGINS LYLE: Right.

KERRY BENJOE: And some people, it really does open up that conversation. You'd be surprised that some of the people that share their own stories you know like "my mom was a victim", "I lost my sister." It gives them an opportunity to recognize it in their lives and to also speak about it, because I think there is a, our rates in Saskatchewan are so, we have the highest rate of domestic violence in Canada. And part of it is because we stay silent, you know, we keep it to ourselves. So I use my story and my image, I guess. I use it to just start that conversation, even if people don't aren't ready to talk about it, at least they know they can see the damage that it can have on a person.

ELENA HUDGINS LYLE: Going back to the question, it sounds like sometimes you actually really value this question. Overall, is this an inappropriate thing to ask?

KERRY BENJOE: I think what's inappropriate is to just stare. I've got, I've had to deal with a lot of people that just stared and I'd rather have them converse with me than to stare at me like I'm some kind of creature. You know like, like if you're curious ask. For me, it's a conversation starter. Maybe it comes with my background of being a reporter that I don't mind answering questions as long as they're not disrespectful.

ELENA HUDGINS LYLE: Like in terms of the place they're coming from?

KERRY BENJOE: Yeah like I respect those that are curious and will say, "I hope you don't mind me asking." And that's like the best way to say it, "I hope you don't mind me asking, but what happened to your leg?" That's probably the best way to ask that difficult question if you're curious. If the person is not comfortable, they can just tell you, like, "I don't feel comfortable" and that's the end of it. It makes me feel very awkward to just know that people are talking and looking at me. They have questions about why I have a prosthetic. I choose not to cover it up. I'm very open with it. There was the option to get a foam covering to make it look like a leg.

ELENA HUDGINS LYLE: Right.

KERRY BENJOE: But I chose not to do that. It's not for the attention, but rather it's more about accepting myself for what I look like now.

ELENA HUDGINS LYLE: Right.

KERRY BENJOE: Covering it up with a foam, piece of foam it's not me. Like my leg is me now. I'm really happy that my prosthesis here in Regina was able to let me choose the covering for my, for my leg. And I chose the most gold-like material that I could find and I’m really happy with it. My oldest daughter, she was like, "yeah, of course you'd do that, you're always so extra!"

[Music]

HARVINDER WADHWA: I thought that amputations always happen after a specific accident or injury, but now I'm learning that's not always the case.

ELENA HUDGINS LYLE: Jamie Gane is an adaptive athlete from England and people make this assumption about him a lot.

JAMIE GANE: I'm a professional athlete in judo and obstacle racing with a single below-knee amputation and a spinal cord injury. I went through a time where I maybe had five or six people on an average day asking me what happened to my leg because I lived right in the town centre, knew people all the time. And it always happens when you're in the middle of something else, you know, you're going to the bank and the bank closes at 4:00 and it's 3:55, you got five minutes to get there. And someone like stops you, puts their hands up "oh, what happened to you? What happened to you? Were you in the army?" And there's always that, "were you in the army?" You know, they think of a young athletic chap, oh, you must have been in the army. I'm on my way to the bank, I'm doing something. Can you go look at my blog or go look at my website? Can you just look at that? Because I'm bored of telling people. You know if five or six people are asking you a day, that's an awful lot of times explaining the same thing over and over again.

ELENA HUDGINS LYLE: What do you tell them? Is it like a one liner? Like I had it amputated, like what do you usually, how do you usually respond?

JAMIE GANE: If that happens in that situation, most of the time I just say, “oh, I had a chronic pain condition. My leg didn't work. I got a new one.” Just kind of keep it short and simple.

HARVINDER WADHWA: Is that the same case when kids ask because they can be very blunt and curious.

JAMIE GANE: I mean, obviously, as an adult, I can kind of keep it very brief and use my tone and my gestures to kind of signify that I don't want to talk about it or this is the most I'm going to talk about it. With kids, it's obviously a lot different. You know, they're really inquisitive. And I understand that, you know, and I kind of applaud them for asking questions. And, you know, as a school teacher myself, I want to encourage students to ask questions. So when they do ask, I always welcome, not them with open arms, the questions with open arms. And I tend to keep it very you know, “I had a leg that didn't work very well and I'm getting a new leg so, well I have a new leg. And this one works really well and I'm able to walk on it and I'm able to run on it” and then kind of go, “oh, OK!” And that's it. They're quite happy. They're satisfied. They have their answer. And they normally go back to their parents and say, “Mummy, look at that man's leg. He's really cool!” You know, which is quite cute.

ELENA HUDGINS LYLE: Do people accept your answer? You know, if they're expecting you to be like I was in this horrific accident or in the army and you tell them I had a chronic pain condition, how do they usually react to that? Or are they like, “oh, OK” or are they mind blown?

JAMIE GANE: Well I think, I think if I go into it fully, you know, and I say, “oh, I was in a wheelchair for 14 years, not able to walk and now I can walk, now I can run. Now I'm a professional athlete who runs marathons and you know, who's ranked second in the world.”

ELENA HUDGINS LYLE: Nice.

JAMIE GANE: And then they kind of go, “oh, OK.”

HARVINDER WADHWA: Right.

ELENA HUDGINS LYLE: So in the interest of that understanding and sorry if we're the seventh and eighth people to ask this, but do you mind telling us a little bit more about that? Like, what's the fuller story?

JAMIE GANE: Yeah, sure. So I had a chronic pain condition called complex regional pain syndrome. And it's effectively a problem between the pathway between your brain and a limb or a part of your body. And my foot was completely purple. I couldn't wear shoes or socks. I couldn't do anything at all, you know. I couldn't have the duvet on me at night. It was so, so painful. And when I was about 16, I went to the doctors and said, you know, it's not, it's not working, all of the things you've tried. I had 25 surgeries by that point.

ELENA HUDGINS LYLE: Wow.

HARVINDER WADHWA: Oh wow.

JAMIE GANE: Yes, it’s a lot for a 16-year-old yeah. And they said, “OK, well, we're going to do this other surgery and this other surgery. And if that doesn't work then amputation is on the cards.” And I hadn't really thought about amputation before. I hadn't come across it. So I thought, oh, wow, OK, amputation. Yeah, let's get rid of the thing. You know, it doesn't work. Let's just get a new one, whatever. And they said to me, “you know, you're only sixteen. You don't know what you're talking about. You know, you're only young,” et cetera, et cetera. So I then just fought, I just kept going and going, going until I found a surgeon that was willing to amputate. But even saying that, I went for my first amputation in July and ten minutes before the procedure, I was gowned up, I was marked ready for surgery. Ten minutes before the procedure, the anesthetist said, “nope, I'm not doing it.”

ELENA HUDGINS LYLE: Whoa.

JAMIE GANE: Yeah, the whole thing was canceled. And then I had to go back to a therapist, back to see a different specialist. And then ten weeks later, it was actually done.

ELENA HUDGINS LYLE: Whoa.

JAMIE GANE: So it's a long, old journey, yeah.

ELENA HUDGINS LYLE: That sounds exhausting.

JAMIE GANE: It was pretty exhausting. You know, my amputation was my thirty sixth surgery, so I kind of had enough by that point.

HARVINDER WADHWA: Oh my God Jamie, I can see how it could be annoying to constantly have to explain yourself.

JAMIE GANE: Yeah.

ELENA HUDGINS LYLE: Do people tend to view you differently as an athlete? You know, given that you use these adaptations, do you ever get someone going, “wow, you're so inspirational?”

JAMIE GANE: I think to a certain extent is quite nice for some people to say, “oh, you know, what you've done is really inspirational.” And I think, I think that that works really well if you have genuinely done something that inspires other people. So, for example, you know, I ran around 50 miles in a weekend a couple of years ago. And, you know, for people to say, “oh, wow, okay, that's a really inspirational feat.” Well, it is for anybody, you know, whether you've got one leg or two legs. And I kind of think, okay, I can understand how people find that. Whereas when I'm walking down the street and I'm just walking, they don't know who I am and they just go, “because you're an amputee, you're inspirational.” Just existing is not an excuse to be inspirational.

HARVINDER WADHWA: But, Jamie, could it be because people say that you crossed a hurdle even though you had the disability, you are doing better than most people who do not have that disability? So from that point of view, would you not say it's a wow moment?

JAMIE GANE: Yeah, yeah. It's interesting because you like for example, I sometimes come into situations and I don't always appear like an amputee. You know, I don't have an obvious, obvious limp. And if I wear trousers, I wear a cover for my prosthetic so that it kind of fills out my leg. So to most people, you can't really tell that I'm an amputee and, you know, I go to a gathering and be surrounded by people and they'll say, like, oh, you know “what do you do? What are you doing tomorrow?” I say, “Oh, I'm just doing a long run tomorrow, you know, just just going out for like an hour and a half, just going for a nice run.” And they say, “oh, wow, OK, cool. That sounds good.” And that's their reaction. And then later on, you know, like, I might sit down on the sofa, I might just take my leg off because why not? And then people say, “wow, I didn't know you were an amputee.” And then all of a sudden that goes from, “oh, wow, OK, cool. You're going for an hour and a half” to “Woah! My mind is blown. Wow.” And it feels so exaggerated and it feels so insincere to a certain extent that actually you kind of get seen as two different people in these kinds of situations. And actually you should be impressed or inspired or whatever by anybody doing anything as well. You know, not just because I'm an amputee.

[Music]

ELENA HUDGINS LYLE: We’re back with my friend Julianna, who you heard at the beginning of the show.

HARVINDER WADHWA: So, Julianna, the next time someone sees someone on the street who might be an amputee, what should they do? Should they just stare and say nothing or should they approach and talk?

JULIANNA ROMANYK: Yeah, people will stare. I respect people that will, like, stare and then be like, OK, I got my eyeful and then I'll move on. I'm like, you know, fair. I also do that sometimes in my life. Like, I guess the same kind of rule applies to like if you look at somebody's cleavage. It's like get an understanding, move on, like it's OK. It's a natural phenomenon, but like don't try to linger too long.

HARVINDER WADHWA: Your choice of words is amazing.

JULIANNA ROMANYK: But I think the only rule is don't make it your first question.

ELENA HUDGINS LYLE: Right.

JULIANNA ROMANYK: That's the only thing I'm kind of asking.

ELENA HUDGINS LYLE: Right.

JULIANNA ROMANYK: If we've had a five minute conversation, you say, "can I, can I just ask you, bah bah bah" I'll probably be fine about it. I think this is another inappropriate question, by the way. The classic question is, if you woke up tomorrow and you had ten fingers, what's the first thing you’d do? Like everyone expects me to say, I jump for joy like I won the lottery. But really, I’d just be like, why? I don't really need this. There's literally nothing that I can't do in my everyday life that bothers me at all. Like to me, it does not satisfy anything because I can do everything that I want. And the things that I've learned from being “different” have been huge and valuable. And I feel like it's given me more empathy for any kind of person that feels different in this world for any reason. And yeah, I would never undo any of it.

[Music]

HARVINDER WADHWA: I'm Harvinder Wadhwa and

ELENA HUDGINS LYLE: I'm Elena Hudgins Lyle.

HARVINDER WADHWA: Thanks for getting inappropriate with us.

ELENA HUDGINS LYLE: A huge thanks to our guests, Julianna Romanyk, Courtney Gilmour, Kerry Benjoe and Jamie Gane. And by the way, all the music in this episode was written and performed by Julianna. You can search Romanyk wherever you stream music to hear more.

HARVINDER WADHWA: Also, make sure you visit CBC.ca/iqpodcast for a full transcript of this episode.

ELENA HUDGINS LYLE: The groovy group behind this podcast are Sabrina Bertsch, Cindy Long and myself. The show is mixed by Andrew Norton. Our chase producer is Sarah Melton and our digital producer is Judy Ziyi Gu. Our senior producer is Geoff Turner. And our executive producer is Arif Noorani.

[Theme Out]

HARVINDER WADHWA: An inappropriate question is like getting a paper cut, but your family won't bring you breakfast in bed.

Transcript: Inappropriate Questions — Season 3, Episode 1

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