“Every opportunity we have to see and hear disabled people—disability of all kinds, whether it’s physical, visible, not visible—contributes to change,” says author and songwriter Christa Couture. “The more that we see diverse representation from the disability population, the more we’re humanizing people with disabilities and challenging stereotypes about people with disabilities.”
Couture mounts a ferocious challenge to those stereotypes in How to Lose Everything, her painful but gorgeous memoir of grief and renewal. As she recounts her journey as an artist, lover, mother, and amputee, Couture transposes limb loss (and other forms of loss) from the fringes of experience into the realm of the relatable and ordinary—”the mushy middle,” as she calls it, where most of us dwell from day to day. The resulting narrative is more about humanity than disability per se—and that’s what makes How to Lose Everything such a remarkable portrayal of disability.
Here, as promised, is the full version of the Q+A with Couture that we excerpted in our May/June print issue. Learn more at her website, christacouture.com, and order a copy of How to Lose Everything from Better World Books. Our conversation is edited for length and clarity.
Who have you been influenced by as a musician? Are there artists you’ve been deeply influenced by?
I think if if someone heard my very first recordings, they would hear my not at all hidden attempt to sound like Ani DiFranco. I was a teenager learning to play the guitar, listening to Ani diFranco, who is brilliant, and listening to the Indigo Girls, and I think that really comes through in my my early writing. And then I also really had a thing for Tori Amos as a teenager. I had like eight posters of her on my wall. I also grew up with my mom’s folk records. Simon and Garfunkel—I think we played the Graceland cassette tape until it broke—and Carole King records and all of that were in the house. So as far as the singer songwriter thing, those definitely were influences.
As I started to find my own sound, I started to bring piano into my songwriting around my second and third albums. More contemporary artists like Regina Spektor open my eyes to a way that piano could sound in pop and singer-songwriter music. Amanda Palmer is someone who I wouldn’t say impacted me musically as far as her style, but she impacted me as far as her fearlessness. And that shaped me as well.
What about from a writing standpoint? Is there a writer who you admire or who you have emulated in your style of storytelling?
To be honest, I didn’t think of myself as a writer before I wrote a book. I’ve been a songwriter, and I’ve blogged, and I’ve written some Web articles—you know, 600-word things with catchy headlines. But when I decided to write this book, I did start reading a lot of other memoirs to get a sense of the different ways that could be done. There’s one called The Boys of my Youth by Joann Beard that really inspired me because she writes in the present tense and she writes such incredible scenes. I had taken this week-long writers’ workshop in creative nonfiction, and our facilitator said, “You shouldn’t be able to tell if something is fiction or nonfiction when you’re reading it. It should always be a powerful story.” When I read The Boys of My Youth, I felt, “Oh, this is what he means.” When I would think about trying to write scenes, I would call her to mind because she does it so well.
Did you get approached to write this book? How did the project come about?
In 2012, a writer/editor named Kerry Clare wrote to me and asked if I would be interested in contributing an essay to an anthology on motherhood. She had come across the blog that my ex and I kept about our son Ford. We moved around to different hospitals—we were in Edmonton and Vancouver and Toronto—and so we kept a blog on the various ups and downs of his medical life. So Carrie Claire sent me a note asking, would you be interested in writing an essay about mothering children who are no longer there? So I wrote a piece for the anthology, which is called The M Word: Conversations About Motherhood, and I loved the experience. It was really meaningful to me. That was probably my first taste of thinking of myself as a writer.
The reception was positive, and the feedback was positive, and the literary agent who had sold that book sent me an email and said, If you ever want to write something longer, let me know. My first idea was to go back to those blog posts and build them into a book about Ford, about the medical system, about his heart disease and heart transplant and all of that. And she said, That sounds like that might be really hard to do. And I was like, You’re right, that that could be a really hard book to write and a very, very hard book to read. And she said, From what I know about you, you have a number of extraordinary experiences. I mean, I watched you walk in here, I can see your leg, like, What’s that about? I mentioned I’ve lost another son—there’s all these other experiences of loss. So I decided that was gonna be my thesis—the different losses that I’ve experienced.
This is a long answer to question, but that’s how the the idea took shape. And once I wrote that outline, what I call my grief bio—cancer, amputation, death, death, divorce, more cancer—I thought, “Oh, there’s the book I’m gonna write.”
The prologue has a depiction of this kind of “othering” that you experience when you are talking about your experience of motherhood. It talks about other mothers’ discomfort when learn you lost two children. I feel like that is a totally relatable experience for amputees, where the mere fact of your loss creates distance. That seems like a theme that runs throughout the book, in tandem with loss.
I noticed that after some of the first draft was done. As I remembered these moments in my life, what came out was how often I felt like an outsider—how people perceived me and what they thought about me. Whether it is about motherhood or cancer or being an amputee, I would have to work with that tension of: “What do I say? What impact is it gonna have? What assumptions are they making about me?” There’s all of this internal labor we do in our thoughts to navigate situations on the fly. There were so many times where I felt different or was made to feel different. I didn’t write the book with that theme in mind, but it’s something that came out.
That’s something that’s satisfying about both writing and songwriting. After the fact I realize, “Oh, that’s what that’s about.” That’s the gift of doing creative things—it’s like gardening. You plant something, and then you’re surprised at how it turns out.
Do you feel there’s any evolution taking place in how society regards people with disabilities, whether it’s limb difference or another form of disability? Do you feel people are making any progress in their ability to accept and be at ease with those forms of variation in our humanity?
I hope so, but I don’t know. Maybe. I think every opportunity we have to see and hear disabled people—disability of all kinds, whether it’s physical, visible, not visible—but every opportunity for someone in that population to be given a platform, I think contributes to change.
But my book is not a book about disability, and that was intentional. Yes, there are times where I’m writing explicitly about my leg being amputated and getting my floral prosthesis, but mostly disability just happens to be there. It’s just part of who I am. And I think the more that we see diverse representation from the disability population, the more we’re humanizing people with disabilities and challenging stereotypes about people with disabilities.
I had this interesting moment with my proofreader—she flagged this scene where I talked about having a crush on my doctor at a walk-in clinic, and I mentioned at one point that he pushed back in his wheelchair. And she’s like, “You don’t explain why he uses a wheelchair.” And I said, “I don’t know why [he uses one]. I’m just describing this person, you know? He was in a wheelchair; he also had brown hair.” We don’t need to stop and put a spotlight on his disability because it just isn’t the point. He was really cute, and he was really nice to me. That was the point.
To me, that shows that the proofreader—who did a really great job overall—maybe hasn’t encountered many stories from disabled people, because otherwise she might not have been caught on that passage. Maybe now something has changed for her. If change is happening, I think it’s happening in those tiny little ways, one encounter at a time. I think it is changing slowly, and we just need every opportunity to challenge what people think.
Is there anyone out there who you think is portraying disability in a way that’s driving that change forward?
You should watch Special on Netflix, by Ryan O’Connell. It’s so good. Each episode is only 13 minutes long, so it’s really easy to watch. It’s funny and genuine, and there’s a really funny moving, authentic sex scene with a disabled person in one episode. It’s great—especially because he himself has the disability. So often when you see a character with a disability, they’re not played by an actor who has lived the experience.
And then I’m so grateful for social media, because that’s where I’ve been able to find some narratives and representation of the way people [with disabilities] actually are, and where they’re sharing their own stories. The way Mama Cax presented herself on Instagram changed my life. There’s a YouTube series I like called “Stump Kitchen” by Alexis Hillyard. I just love the fact that it’s a cooking show. She has a disability, and she weaves it into the show, but it doesn’t always take center stage. Sometimes it’s about disability, but it’s also just about your relationship with your mom, and your dating life, and all the stuff that everyone experiences. That’s what I’m looking for.
That came across in your book. Disability is an essential part of it, but it doesn’t seem to have been compartmentalized as a quote-unquote disability book. It’s universally relatable.
I hope so. That was important to me. And it’s funny because I’m disabled and queer and indigenous, so sometimes people try to promote the book because it checks those boxes. But I just happen to be those things. It can be disheartening when you get boiled down to a label, and a lot of assumptions get made about that one thing. We are all more complex than that. I was aiming for a broader experience.
In the book you allude to many different identities that you have, or ways you identify yourself. As a reader, I thought the identity that encapsulates the whole is your identity of Sanibe.
Well, that’s kind of at my core who I am, and everything else is sort of a branch of that persona. That’s my spirit, for lack of a better word. It’s kind of my role in the community. But it’s interesting about identities. I’m a Cree person, but I’m white-presenting, so it’s not something people assume when they look at me. Same with queer—people read me as straight, because I’m pretty gender normative. But being disabled? Unless I put on long pants and stand very still, people can immediately tell by looking at me.
You’ve brought up the Cree half of your upbringing a couple of times. How do you see that sensibility being expressed in the book? I found qualities in your storytelling that struck me as being rooted in an indigenous worldview—more cyclical, more of a kind of a wholeness of being, as opposed to a linear narrative.
Well, it’s part of who I am and how I was raised. It is my worldview, so I can’t really separate myself from it. There’s a different sense of time, the idea that everything’s happening at once, and the past is here and the future is here, our ancestors are with us and we are future ancestors. And there’s something about that, when it came to grief, where it helped me make sense of things, because I felt like I was always kind of moving forward and back in time. And rather than kind of fighting that or questioning that, I just accepted it as an example of that part of my worldview.
But again, I wasn’t trying to write something about being indigenous. The ways that it pops up in the book are almost incidental. Where it came through or where it might be evident is just kind of secondary.
Here’s one reason I’m bringing this up: A common complaint I’ve heard about stories of limb loss is how they get forced into this very linear “triumph over adversity” arc, which completely misses the ups and downs and the doubling back that people actually experience.
We see that with indigenous stories, too. I would say nonindigenous audiences often expect a traumatic, sad story, because that’s how indigenous stories have been presented to them. And those are true stories, right? It’s just that they’re not the only stories. And I didn’t want to fall into that. I didn’t want my book to be a messy, cathartic thing. And I also didn’t want it to be a happily-ever-after. I just wanted to say, you know, these experiences are hard. I’m learning to live with these things.
And that’s what made your book so distinctive for me. You didn’t give in to this idea that every narrative demands a resolution—preferably a happy one, and one that lets the reader feel good at the end as opposed to having to wrestle with discomfort.
Have you read Brilliant? You should read it. The writer is a disabled, trans guy. And there was so much in it that challenged my ideas of of disability and ableism, even from my perspective of being disabled for 30 years. He talks a lot about the messy middle, and that’s kind of where we all have to be, with the pros and the cons and the things that kind of contradict each other. And that’s hard.
I want to challenge people’s stereotypes about disability. I want to challenge the pitying that can happen—but there are days that I don’t want to have only one leg. I could never say that on social media, because then you’d have people saying, “I knew it! Having one leg sucks.” But it’s quite tiring to have to maintain one version of the story, when it’s so much more complex. There are things I love about this experience, and I wouldn’t want to change who I am. Having two legs would make me a completely different person, and why would I want to erase my existence in the world? But some days it really sucks, and you can’t really say that out loud.