Hear this episode at theallusionist.org/additions-losses
This is the Allusionist, in which I, Helen Zaltzman, sit down next to language while it is sat on its tuffet eating curds and whey.
In this episode I talk with Christa Couture, a musician and writer, and she’s so interesting and delightful, BUT, I must warn you beforehand that we do discuss some heavy topics: cancer, Christa’s leg amputation, disability and ableism, and grief. We talk about the deaths of two of Christa’s babies, and I know that is a subject some of you may need not to hear about right now, so I’ve put the part of the interview towards the end of the episode, about 20 minutes into the show, and I’ll warn you before we get there so you know when to tap out, if you need to.
On with the show.
Christa Couture, photographed by Jen Squires
HZ: I was surprised to learn that the word 'prosthesis' was a grammatical term for 150 years, before it meant artificial body parts.
CHRISTA COUTURE: Was it? Tell me!
HZ: Yeah! It was the addition of a letter or a syllable to a word.
CHRISTA COUTURE: Really?? Prosthesis. I've never thought about that. I love that. As far as pros- and -thesis, like what do those mean?
HZ: 'Pros' meant to. And so it's prostithenai in ancient Greek which was to add to, or place next to.
CHRISTA COUTURE: But not in place of?
HZ: No!
CHRISTA COUTURE: Yeah. I love that. It’s funny, it's never occurred to me to to think about the root of that word.
HZ: Speaking of prostheses - the bodily kind - Christa Couture has the most glorious one I’ve ever seen: her leg is covered in this vivid floral design.
CHRISTA COUTURE: I'm Christa Couture, I'm a writer, musician and broadcaster based in Toronto. I am also queer, disabled, Cree, and a mom.
HZ: Christa has also written a book, How To Lose Everything, a memoir in which she recounts some very difficult and tragic things that have happened in her life - and a recurring theme in it seems to be that people she encounters want to express sympathy but do NOT know what to say, so then they say something a bit terrible.
CHRISTA COUTURE: Yeah, that happens. It's interesting: in the book I talk about my disability, losing my leg to bone cancer as a kid, and I talk about losing my two children, my two sons who died at different times. Those are very, very different experiences. And sometimes I've heard people talk about losing a child and people say it's like losing a limb. And I'm like, as someone who's lost both things, I just want to say I get where you're going with the metaphor; it's a part of you, there's something maybe there. But the the realities are very different. At the same time, I've drawn some correlations between living with the grief and disability, just in the ways that you have to make accommodations. You have to think about your day and think, what can I handle and what do I need and what's out there and what am I going to encounter? And so there are similarities in the strange ways that people have responded to both of those things, their shock or their discomfort - I think most often their discomfort - and not knowing what to say or running off in a direction that they think might be helpful and it really isn't.
HZ: Do people ever say "Everything happens for a reason"? Because that seems like a hugely insensitive thing people love to trot out.
CHRISTA COUTURE: People love that. And to me it's just not true. And I don't find it comforting. Sometimes when I'm annoyed with that question, I try and think, OK, this person's trying to be comforting. They're trying to reach out. But over time, I became less patient and understanding of their intention, because it really denies a person their experience. It takes a person out of the present, because if something awful has happened and you're in despair or you're grieving or you're just processing and someone's like, "everything happens for a reason," they're already trying to fast forward you and get you somewhere else, rather than just be with you where you're at. And where you're at happens to be on the side of emotions that are like negative or unpopular. People just really want to want you to get through it quickly, but it's such a disservice. And it actually is just like cutting off a huge part of our human experience to say "Don't feel bad because it's all for a reason and just wait and see and it's going to be OK." It's like, but why can't we just find out about it not being OK? That might be interesting.
HZ: Maybe people just want to believe that there's some kind of order in things that will protect them from grief. But unfortunately the platitudes don't really work that way. Or do they?
CHRISTA COUTURE: No, no, they don't have the effect that I think people are hoping for. Not to me. I wonder if there's someone out there who's like, I love that shit. Tell me it happens for a reason, that is going to help me through this. Maybe it's useful to someone! I don't know. I haven't met that person.
HZ: I think people are just so uncomfortable in grief. We don't necessarily have an excellent vocabulary for expressing these things. And maybe to express it would be… it's like a door that we can't open.
CHRISTA COUTURE: Yeah, yeah, I think it is. And even someone who's on this side of, you know, a number of extraordinary losses, I also sometimes I'm like, "what do I say? What do I do?" And things come out of my mouth, and I'm like, "Oh, I don't mean that, I'm sorry." Because it is uncomfortable. And of course you don't want someone to suffer. We don't want that for each other. At the same time, there is suffering. So yeah, how do we get through that and what do we say. A friend of mine when talking about when you've lost a person in your life, when someone dies, for him, the best thing is always just, "I'm sorry for your loss" and then to pay attention to anything that you might say after that, because anything after that might start to be your own perspective, your belief system. Like "I'm sorry for your loss, but they're in a better place" - that might be your thing, but those add-ons are where you're getting into the tricky territory. So sometimes it's keeping it simple, I think. And yeah, for me, I mean, my advice when people ask, "Well, what do I say to someone who's grieving?" Just trying to find those words that are like, "I'm thinking of you, I care about you." Not like "I wish this wasn't happening" or "it's going to get better" or just trying to find something that is present and acknowledges what's really going on for someone.
HZ: So acknowledge pain and don't either offer suggestions or say something that requires a response.
CHRISTA COUTURE: Yeah. The number of times I felt like I had to then kind of manage or give something back or give something more to help them through their discomfort.
HZ: About 10 years ago, my mum had a very serious car crash and I was in her hospital room and one of her friends came and was just like, “Do you remember John? Well, he DIED in a car crash. Do you remember Edward? He broke his pelvis!” I don't know why people express sympathy by scrolling through this Rolodex of doom in their brains.
CHRISTA COUTURE: Yes, again, I think they're trying to relate? I don't know. It's interesting with losing my leg - "interesting", funny story! - because, of course, that was really hard. I was a kid. I was 11 when I first got cancer. I was 13 when my leg was amputated. At a time when you already feel pretty weird in your body and you desperately want to fit in, I really stood out. I was on chemotherapy; I was bald; my leg was cut off.Things were different for me. It took time to get used to that. And it took time, I think even into my 20s, to kind of grieve that and then be OK with it. And then there's been these other losses that are so much greater and so much harder and so present every day. And I think with my leg, sometimes people look at me and they think, "Oh my God, you only have one leg, that's terrible!" Well, it's not. It's fine. I have a fake leg. Sometimes it works great. Sometimes it's not great.
HZ: It's beautiful, though.
CHRISTA COUTURE: Thank you. I mean, it looks good. So there's that. But it's just a leg. It's not a person. And there's so many other parts of my life that are harder and more beautiful. And it's an interesting thing about me, but it's not a defining feature. And yeah, I was lucky: I was lucky to survive cancer. The fact that there was a cure for my cancer was really, really lucky.
HZ: Do you remember how the kids at school talked to you about it? Are kids better at this because they're a little more unguarded?
CHRISTA COUTURE: Hmm. In some ways. I mean, I still deal with kids all the time who come up to me and want to touch my leg and ask me things. But at the time... I think what what kids do well, is they have all their questions and maybe they're not always appropriate. But once you give them an answer or tell them why you can't answer there, they move on, they go back to their thing, they let it go. But at the same time, there was a way that as a kid, I became this curiosity - and I used it to my benefit, like I tried to make it cool that my hair was falling out and and I'd make jokes about it, and find ways to invite them in to this thing that was happening. But there was, of course, ways that I was teased or mocked. I remember being called 'cancer on a stick', which is kind of funny, but at the time it felt mean. And kids do that too, right? But I think, the kids I was in school with I'd always known, like we'd been together since kindergarten and that kind of thing. So there was a lot of understanding at first. But really, belonging took place in the hospital where at least all the other kids were bald, and we all had tubes and IVs, and we didn't have to explain anything to each other. And so that was kind of a special place to just fit in.
HZ: How do you respond to people using words to you such as 'inspiration' or 'brave'?
CHRISTA COUTURE: Well, if I'm doing something actually inspirational, sure. There's so many times with disability that we're called brave or inspirational for just standing around. I was waiting for the bus and listening to music with my headphones - already a signal that I want to be left alone - but a guy came up to me and asked me take them off and said, "I just want to say" - and I was like, “yeah?” - "I just want to say, I think what you're doing is really inspirational." And I was like, I am literally just standing here listening to music. And do you think that this is a feat for me, to to be in the world? It reveals to me or it tells me so much about what that person thinks about having a disability. They think so little of it, they are impressed that I would leave the house. And so it's actually really quite awful to be held as an inspiration for just being around.
As a kid, when I had cancer, people would often tell me, "Oh, you're so brave." And it was terrible to hear, because I didn't choose that particular challenge. Like, I think if people want to acknowledge bravery, we can look at people seeing some choices and taking the hard path. And I was a kid and maybe there was times I coped with being sick, you know, well, whatever that was; and ways that I didn't. Or even with grief, like, I think sometimes after I lost my sons, I became really productive and I recorded albums and started going on tours. It wasn't really a healthy coping mechanism. It's what I used. But people were like, “Wow, you're doing so much,” I was like, because I can't sit still, I will fall apart. But there was a value on my coping mechanism versus staying at home and drinking, which would have had the same sort of numbing effect. But people saw it as somehow like more valuable. And I'm not sure that it was.
Those ideas of bravery and inspiration are rooted in people's discomfort, people's ignorance, in ableism. And in denying this part of our experience.
So, yeah, I don't like being called an inspiration or being called brave. I don't like when people say, "I don't see you as disabled. I really - you know, we all have strengths. We all have disabilities." Yeah, but you can get up out of your chair pretty easily, so... And walk across the room. To me, those tie together, because ultimately, people are using those words to avoid having an actual relationship with disability and have a relationship with disabled humans because it separates them, it erases their experience, it projects all kinds of BS on them. And people say it's with good intention, but I think it's actually harmful. And it just speaks to, kind of like with grief, this enormous discomfort of wanting to avoid something that is just real.
HZ: I don't feel like intention is necessarily something that you need to pay attention to either, given what the impact is.
CHRISTA COUTURE: Right, right, and I think I'm learning how to pay less attention to that. I think my like "I know you have good intentions, blah, blah, blah," is from years of trying to manage other people's discomfort, and being a good Canadian or whatever, being polite. You're right, the point is that it's ignorant and it's harmful. So let's move from there. And this is a learning moment. ‘Disabled’ and ‘disability’, for some people, land as negative words, and I think our first problem is there: they're not. They're not.
I use identity-first language over person-first. I find that's the general preference within the disability community. It's not true for everyone. And that's to say, I'm a disabled person versus a person with a disability. And that is for a couple of reasons. One, because I just don't think I should have to reiterate and highlight that I'm a person; that just should be granted and pretty clear.
HZ: If you're using language, then you're probably a person.
CHRISTA COUTURE: Yeah, probably. But I shouldn't have to, I feel like, assert my humanity. That should be a given. But what I also like about being able to say 'disabled person' is it can actually help highlight what is outside of me and actually doesn't have to do with my body. Because I'm disabled by many things other people aren't. Like in Toronto, our subway system, I think only like four of the stations have elevators. And so there's a bunch of stations that a number of people can't use. So we're disabled by that design, by structural things and systemic things. And so for me, it's helpful when I say I'm “a disabled person”, because then we can look at like all of the barriers I happen to face or someone else, what their barriers happen to be, versus “a person with a disability”. And then I feel like with that, we're less likely to say, OK, but how does that actually play out in your day? Because my disability, my particular disability, matters less in certain settings. I'm impacted by it less depending on what I encounter. And so that's just an equity issue.
But also, because I can't extract it from who I am, as much as I can't extract being white-presenting, being short; these are all I know. And the same with being disabled, at least for the last 30 years: it's not something - it's not an accessory. But it's something around disability that I think we see a lot, and again, it's people's discomfort or what they're attaching to the word that there's something negative about being disabled, like, oh no, you're not disabled, don't say that, you're so talented. I'm like, "I know. I know. And I'm disabled."
HZ: There are words that Christa would prefer people did not say.
CHRISTA COUTURE: I wish people wouldn't use ‘lame’ when they mean boring or ridiculous. The use of it to mean those things is so present. I guess it means to not be able to walk, to be injured. I don't think we should conflate that with something being uncool or or tedious, as much as having an injury might be tedious or uncomfortable.
HZ: "This party's boring," that's what they mean.
CHRISTA COUTURE: Yeah, yeah. But I think for many in the disability community, because there's so much language that is hurtful or harmful or puts down their experience, it touches on that. And until we're able to say 'disabled' without it being this negative, loaded, pitying thing, I think we should not say ‘lame’ in those other ways. Like, it's not the worst word, but it touches on something very important.
HZ: It's requiring an examination of the prejudices that are encoded.
CHRISTA COUTURE: There's a number of ableist words that I wish people would be more creative about finding other options.
HZ: We have a lot of other options, it's a very large lexicon.
CHRISTA COUTURE: There's many words to choose from. I don't like to hear ‘differently abled’. I don't like to hear ‘handicapable’.
HZ: Why don't you like those in particular?
CHRISTA COUTURE: They're euphemisms! And they’re silly. Those words always come as part of the conversation thing, "But I see you as so capable, I see you as handicapable," like this weird idea that disability is somehow going to impact every part of my being, even though there's actually very specific ways that it affects me. So those are words I want people to not use.
HZ: I was interested to learn, though, that ‘handicap’ was a betting term for the first 250 years of its life.
CHRISTA COUTURE: It gets used in golf, doesn't it?
HZ: Yeah. And horse racing and things. So it was only from the 1890s that it was a physical disability word.
CHRISTA COUTURE: And now one that is frowned upon. It's so interesting, isn't it, how it shifts.
HZ: I think actually the shiftingness is one of the things that makes people struggle with it, because they're like, "I don't know what to say now, because ten years ago I was told to say this other thing that I'm now not allowed to say. So I'm terrified to say this thing, and now I've made this conversation very awkward, and the wrong word has escaped my mouth because I'm so stressed."
CHRISTA COUTURE: Right. Right. And I've been that stressed out person, who's gone, "Oh wait, I said the thing and I know or I didn't know..." Yeah, it's interesting. I mean, that speaks to the power of language as well, right, like the impact that it's having on people or, you know, where people have asked us not to use those words, and then us being afraid of being shamed of them.
HZ: We’re now at the point to stop listening if you need not to hear about child death. Christa has had three children. Her first child, Emmett, died the day after he was born. Her second, Ford, died aged 14 months, not long after a heart transplant. In the years afterwards, people would ask her whether she had children, and neither “yes” nor “no” felt to her like a correct or easy response.
CHRISTA COUTURE: After my first son died, that question... for me, you know, it would instantly break my heart because, you know, the truthful answer is yes, I have a son and then the rest of the story is ‘and he died as a newborn.’ And so if someone is just - if the cashier is asking you that, what do you say? What do you go into? And to say "no" felt like such a lie and felt like I was denying him and denying myself as a mother. And so I'd be having this seemingly simple interaction and go into a real kind of existential crisis about what do I say, what do I want to say? If I say yes, are they going to get weird and give me platitudes and say I now have a guardian angel? I don't want to hear that. Or maybe it's going to be OK and I could really use that, and maybe they're going to understand and be open-hearted. Or, you know, if I say “no”, am I just going to spare myself this? And it's OK that I say “no”, it's not a lie, it's just to get out of this grocery store in two minutes. All these conversations would happen over a question that seems maybe quite simple. And then when I had my second son, while he was living, it would be "Do you have other children?" Well, yes, the whole same internal dialogue. And after he died, it just became a double whammy, because then the story got even harder to tell: "Do you have children?" Well, yes, two; no, they both died; yeah I know, I know, that's unusual, yeah, yeah. And sort of this kind of bigger, more complicated story to go through. And even now I have a daughter and she's three years old and I still get asked that question, I still struggle with it. I still don't have a pat response, I think because it does depend on on the context, who's asking. But I don't feel guilty in the way that I used to about saying “No”. Like now it's like I can say no, it's none of your business, or I just don't want to get into it.
Sometimes I've had to go back and be like, “Remember that time I said I don't have other kids? I now actually want to tell you: I have two sons that died.” You know, from becoming friends with someone or something, a colleague or something like that. But it's an interesting choice when it's a colleague or at work, because it'll come up or they'll hear about it somewhere else, and then I sort of wish that I had been one to tell them. I once was applying for an apartment, to sublet an apartment. And I was sitting with the landlord and filling out the application to be a tenant. And he decided to Google me, because he asked me what I do, and I said I'm a musician. He went, "OMG, are you online?" And he looked me up, and the first result that came up was this headline from a newspaper that said, "After tragedy, Christa Couture something, something." And then I watched him as he started reading this article. And he was like, "Oh God! Oh God! I guess I should rent you the apartment."
HZ: Silver linings.
CHRISTA COUTURE: Yeah, I was like, “Yes please, thank you.” It was such a strange interaction. So yes or no, do I have children? Yeah, it's a loaded question. I try to never, ever, ever ask it, and not because someone else might have lost a child - maybe they have, but maybe they wanted children and didn't get to, and that sucks. Or maybe they never wanted kids and they're so tired of having to justify their decision. Whatever it is, there's all of these complexities around kids. And I just feel that's a question that we shouldn't ask. It's a conversation to have with people who want to have it. But I think I try to follow other people's lead on that.
HZ: Yeah, there’s different strata of people with whom difficult conversations are more acceptable. And I can understand that with our friends, we might talk about it; and with randoms that we've just bumped into, who have decided to ask us about these intimate details of our lives, we really just need something to stop it before it starts.
CHRISTA COUTURE: Yeah. Yeah.
HZ: When you say to someone who doesn't know you very well, "I have two sons who died," do you then kind of have to hold their hand through that?
CHRISTA COUTURE: Often. Yeah. It's interesting. I mean, it depends on the on the person. Now that I have a kid, and before covid we would be on the playground more often and making small talk with parents, I remember there was one mom, she's pushing her kid on the swings and I'm pushing my kid, we're chatting. And she asked if I have other kids, and I said, "Yes, I have two sons, but they died,” and she just looked at me and said, "I'm so sorry. That's heartbreaking." And then we kept chatting and I was like, "Thank you so much!" It was exactly what I probably wanted to hear every single time, because it IS heartbreaking. But I don't want to get into the like, "!!! Oh my God!" because some people are like, "Oh, oh God, I'm so sorry! I'm sorry I asked." They get into a lot of feeling bad or not knowing what to say, and I'm witnessing them go through that, and then I start to do that, "Oh no, it's OK, don't worry. You know, fine, I could have said no if I wanted to," I start explaining... And yeah, there is handholding with it. And I think there's times, certainly in the earlier years where I was feeling more bitter and struggling and just in that phase where I actually kind of relished that people's discomfort, because I was feeling crummy and I wanted them to feel crummy, too. But now I'm like, I want it to be simpler. I don't want to go through that with them. And I wish that we all had the skills to just say, “That's heartbreaking. I'm sorry.”
The Allusionist is an independent podcast. Thanks very much to you excellent listeners for being here and recommending it to people and for being patrons at patreon.com/allusionist where you subject yourselves to further contents of my brain, which is very plucky of you!
Your randomly selected word from the dictionary today is…
vatic, adj, poetic/literary: predicting what will happen in the future. Origin 17th century: from Latin vates ‘prophet’.
Try using ‘vatic’ in an email today.
In this episode you heard from Christa Couture. Her excellent memoir is out now, it’s called How To Lose Everything, and she also makes music - she has several records available on Spotify, Bandcamp, Apple Music etc. Find her work at christacouture.com.
This episode was produced by me, Helen Zaltzman, with editorial help from Erin Wade. The music is by Martin Austwick from palebirdmusic.com. Thanks to Marsha Shandur.
There is of course so much more to say regarding language and disability; Christa’s talking about her own feelings and experiences here, but she’s only speaking for herself, she’s not the Ambassador for Disability. If you have thoughts to share about how this goes in your life, for example do you favour person-first or identity-first language, you can let me know - at theallusionist.org/contact you can send me a message by voice or by writing, if you’d be up for being heard in a future episode of the show, or if you want your opinions in the show but you would rather not have your voice in it.
Also on the website: you can hear or read every episode of the show, find links to the guests and more information about each topic - in this instance I’ll link to a paper about how the word ‘prosthesis’ - and see the full dictionary entry for the randomly selected word, follow the show on social media, and there’s a lexicon page where I list each word that has been covered in the show so far. That’s all at the show’s forever home theallusionist.org.
