Transcript of, "Parenting Without Pity: Christa", produced by Rooted in Rights] SPEAKER 1: Rooted in Rights is partnering with disabled parents to tell our stories of parenting without pity. SPEAKER 2: If I would've had parents that were aware of disability rights, it would've taken me less time to realize that, like, I could be a mom. SPEAKER 3: We have to have conversations we are not having. SPEAKER 4: There are real-world consequences to you not giving your kid the tools to understand where they are in America. SPEAKER 1: This is a space for disabled parents to talk parenting, and to offer compassionate and frank advice about what it means to raise a child with disabilities. In this episode, Program Director Anna Zivarts interviews Christa from Toronto, Canada. CHRISTA: I'm Christa Couture. I'm a singer songwriter and a broadcaster, and based in Toronto, Canada. I am an above-knee amputee. I lost my leg when I was 13 years old, and I'm now 40, and I'm the mom of a little toddler. ANNA: Congrats. [laughs] How old is your kiddo? CHRISTA: She's a year and four months. ANNA: I have a two and a...almost two-and-a-half-year-old. CHRISTA: Wild, isn't it? ANNA: Yeah, oh my gosh. It doesn't stop. So do you want to talk a little bit about your childhood, I guess your teenage years, when your leg got amputated? How you got introduced to the disability community, whether you were connected... CHRISTA: Yeah. ANNA: Whether that was a challenge. CHRISTA: Sure. So when I lost my leg when I was 13, I already had bone cancer, and the surgery was, at that point, the cure for the cancer. I'd already had chemotherapy and radiotherapy, and so I'd already been in the hospital for about two years, in and out, for treatment. And so when it came time that the resolution was going to be amputation, it was kind of normalized for me a bit, in that I had made a number of friends who had also lost limbs, just other cancer kids. I also had met a number of kids who had died. I knew that the fact that there was this option for me was lucky at that point. I think if the surgery had happened at the beginning, I wouldn't have had that perspective. I mean, I was 13. I didn't have a big picture idea of what this meant for my life. But in some ways, well, in a lot of ways, I think that was a bit useful, because I knew that I was losing my leg, but I'd already met a number of other cool kids who I really liked. I had friends who had limb loss, and they seemed great, and they seemed okay, and so I kind of went into it not really knowing what a big deal it was, and not knowing kind of long-term the impacts. I mean, of course my parents and my family were better absorbing that, and probably grieving a loss that I just didn't sense because I was a kid. I think if I was an adult and acquiring a disability, that would be...I imagine that's very different, because I just didn't have a future life that was already set in a certain direction. So it just kind of changed my path. I think at that age, the idea of disability community, I had no idea. [laughs] I think that's only even in recent years that I've actually started to feel aware of and part of a disability community, and I think that's just my norm...there's a lot of different other communities...I'm an indigenous person, I'm queer, I think my 20s were more politically about being active in those communities, and then in my 30s, it was more like, "Hey, what about disability? What are my politics about this?" And then becoming more aware of other issues and all interests that come with disability and the whole range, and I'm just learning, learning, learning all the time. I think as a kid, I was really lucky. My mom, she's a psychologist and her specialty was working with adults with brain injury, so different, very different experiences. But she already was in a world where she was looking at adapting all the time, and accessibility all the time, and finding ways for people to be in the world, and what did they need for them to have the best life possible? So she already had kind of a mindset and experience of doing whatever it takes, and speaking up when something wasn't accessible, so she luckily had an eye for that. She was also really positive, I think. I mean, we've talked later about it. Of course, she was terrified and sad, but I didn't see that as a kid. For me, she remained very positive for me, and the amputation was talked about very much as an opportunity, that his was now going to be my healthy life, that this would now be my cancer-free life, and that this was my healthy body moving forward, which was really useful, I think. In later years, I wondered if what she could've added to that was actually giving me some space to also grieve, because I think with all of this sort of positivity and support, which I think was really great, I think I actually missed out a bit on having a chance to say, this kind of sucks, [laughs] and this is really painful. And sure, in the hospital, I'm part of a world that makes sense. I have peers, we all had cancer, we all lost our legs. But when I leave the hospital, I'm really unusual. And once I went to high school, I went to...I think I'd been an amputee maybe two or three years, and I moved to a high school where there's fifteen hundred kids, and I didn't know anyone. Suddenly there, I was really an outsider. And so it was in my later teen years where I started to notice that I was actually really different, and most people have two legs, and I think in all the support and wanting me to be okay, I think in my family, the opportunity we missed was actually some space for me to also be angry and be sad, and that's okay. Like, I think we've talked about it since. They were doing the best they could. I can't imagine...it was a lot to figure out, on top of regular parenting, to go through this transition with me, I think. But that's been something I've thought about later. I used to think, "Oh, I was so lucky, my mom was so positive," and then I realized I actually, in my 20s, had to go through a grieving process of just thinking about what that loss meant to me, and that's also ongoing, I think. But I was mostly fortunate in that I lived in Edmonton, Alberta, which in Canada is a big city. And so we had resources, I had a few different clinics I could choose from, multiple physiotherapists. There was a lot that supported me, and I think that was also part of the lucky time and place that I was in, that I had a family who could step up and figure that out with me, and I had resources around, and the Canadian healthcare system, and those were all really fortunate things. Did that answer the question? I can't remember. [laughs] ANNA: No, that totally answered the question, that was great. So you feel like...and maybe this isn't the case for you, but you were asked or you felt like you needed to pretend that everything was okay, and that you were...to try to mask your disability as much as possible to make other people more comfortable, or just because of the stigma around the disability, there were other parts of your identity that you could feel more comfortable being an activist or in for a long time? CHRISTA: Yeah. And as you said, actually, at first, in my teens, I made my leg as visible as possible to people. So I didn't have...I wore a prothesis most of the time, and I didn't have any kind of cosmetic cover on it. So I just have the mechanics exposed, and I did that at the time in a way, because I actually didn't want to be asked any questions. I just wanted people to look at me and know right away and be like, "Yes, I only have one leg." And it was coming from, I think, also a teenage intensity and defiance and this assertion about it. But there was things about that that also would then suck, just people staring that I didn't like. Or I remember once being at...I was at Niagara Falls, which is...you'd think you would just be looking at the waterfall. But these tourists started following me with their camera and just filming my leg, and didn't actually talk to me or say anything. And so this was all in my late teens, and I started to have some of those experiences again, of just noticing, "Okay I'm standing out in ways that maybe I don't want to," but at the same time, I think 'cause I didn't know how to otherwise talk about it, or maybe I was tired of talking about it, I just wanted to put it out there. I was grappling with those things. So in my 20s, I then got a cosmetic cover and then I started wearing pants all the time, and then I stopped telling people, because I on one hand thought, "Okay, I want to put these other things forward and explore the parts of who I am." I'm an artist. I wanted my art to speak for itself, and in starting to look at these other parts of my communities and identities, I also, I think, then started to give in to the stigma around disability, just because at that point, I had experienced more of it, and I think started to feel like, "Okay. I should hide this, and I'm going to face discrimination, and I'm going to face prejudice that I just am not up for right now." Or, "If I can avoid it, I'm going to." I think that was my MO in my 20s, and that's changed, 'cause now I once again made it visible, but coming from a different place. I don't feel as defiant about it. I feel almost more almost celebratory about it, and about sharing it, and I feel more empowered by it. But I didn't 20 years ago. I didn't in the beginning, and I didn't at that young age, encountering...yeah, just all the BS [laughs] and the judgments and the assumptions and the ignorance. And I just wasn't ready to combat that, and I think later in life, just being a little older and wiser, either that stuff rolls off me more easily or I'm more prepared to fight back in a way that is not as taxing emotionally, or just some of my own self-acceptance, because of course there's also a lot of internalized stuff, and I have fought really hard to feel good in my body and to celebrate different bodies and to be body positive for all body types. And there's also years where I hated how I looked, I hated that my body looked the way it did. I wanted to have two legs and look like everyone else, and move like everyone else, and walk like everyone else. And that was a crummy feeling, and I know that everyone goes through that in their body in some way, because no one feels like they meet whatever standard we're all being told ourselves to meet. [laughs] Everyone is affected by that. But if you're a person with a disability, or someone really outside of what that normative thing is, I think we feel it more deeply. Yeah. It's interesting, and the identity piece of it is interesting, even the ways I've thought about personal disability or disabled person, and it's just been a long process of figuring out my own place in those things. Yeah, and growing up with it, or at least from adolescence, it's been interesting now as an adult to look back and think, "How did that affect me?" I have no idea what it would be like to not have cancer. Like when other people ask me, "What was it like to have cancer?" I think, "You didn't?" I'm just like, I don't know. I was a kid, it was just normal. That's what happened. ANNA: How has your sense of how you identify or see yourself in relationship to the word 'disabled' or...yeah, talk more about how that's evolved for you and where you are now. CHRISTA: At this point in my life, I prefer identity-first language with my disability, so I will say, "I'm disabled, I'm a disabled person." I will always, if I'm talking about other people, I will say person of disability until I know from them what their preference is. But for myself, I actually feel strongly about it, because I feel that...well, for a number of reasons. For me, it's such an integral part of myself. I can't separate it. The other parts...I'm half Scandinavian. I'm not a person with Swedishness, I just am Swedish, and I'm Cree, and I'm a cisgender woman, and I'm Canadian, and I'm queer. I'm all these things. These are all adjectives that place me in the world, and disabled is one of those things. And I feel like for myself, when people say that I'm a person with a disability, it's separating it from me in a way that I can't relate to. I think also sometimes when people have this insistence, "Well, you're a person, and you want to make sure you're a person first," and I feel like it should be pretty obvious that I'm a person. Of course I'm a person, and I don't need to assert that when it comes to disability. And So I think sometimes people wanting to put person-language can also speak to their discomfort with disability, because people think the word 'disabled' is negative. So I feel like when people, when I say I'm disabled, go, "Oh, no, you're not disabled," I'm like, okay. It's not a bad word. It's not a bad word to me at all. There are things that come with it that are a pain in the butt, but there's no inherent value that is in any way negative. This is just simply a fact about who I am. I'm short. I don't know. It's just part of all of these details. So I think about it in that way for myself. Again, for other people, I totally respect that that's not how other people want to see it or use it. And sometimes I think that may be because...some people I know who feel really strongly about person-first have encountered acts of discrimination and prejudice that I haven't, and so they have had to really assert that they're a person in ways that I haven't. I think because I can hide my disability. There's things I can do to pass for a nondisabled person, and so friends of mine who can't do that have encountered things that I haven't, and so I also recognize that they're also coming from a place of really different experiences. But for me, what is also helpful about identifying as disabled and saying I'm a disabled person, can also help point out what I'm disabled by. So here in Toronto, we have a streetcar system, and they're slowly replacing the streetcars with an accessible version with no stairs and wide doors and audio cues and all of those things. But a lot of the older streetcars have stairs. Also, the majority of the subway stations here don't have elevators. It's ridiculous. And so I give this example that when I take the subway, I pay the same fare as a nondisabled person. But they're able to access the subway in a way that I can't. There's only a handful of stops I can get off at, 'cause I need the elevator. And so in that situation, I'm disabled by public transit. And with the streetcar with the stairs, I'm disabled by that streetcar, because I can't access it the same way that other people can. And so I think sometimes I also use that word, because it can really help point out the barriers that I experience, and in those situations, when I think of myself as a person with disability, I feel like it's putting the onus on me, which it should not be. It is not my responsibility for the city to be accessible to all people. So I feel like for me, the word is useful when I'm talking about those situations. And because I feel like people's resistance to it does come from them having a negative reaction to it, I try to use it as much as possible, because I want to combat that. And another example recently with a friend, she is uncomfortable with the word 'disabled,' and we were sitting on the couch, and I was like, "Okay. Let's both get up from the couch and walk to the kitchen." Great. So she gets up and she walks to the kitchen, and I just sat there. And she was like, "Well, what are you doing?" And I can't actually get up and walk to the kitchen without a device. I need a prosthesis, I need crutches or a wheelchair, or I'm going to do this funky crawl that I've developed on the floor. Or I can hop, but it's really hard on my knee, or someone has to carry me. That's a really big difference, that I can't just get up. And I think sometimes, it's again because of the disability I have, I wear a prosthesis that looks like a leg, so people, I think, don't always treat that I'm using something, that I'm using a device to get around in the way that crutches or a wheelchair are visually a cue for people, that they get that you're doing things differently. So those are all parts of why the word 'disabled' is important to me and makes sense for me. ANNA: Do you want to talk at all about how disability is viewed in the various other communities that you're part of, in the queer community or the indigenous community, and whether that shaped the way you identify? CHRISTA: I find in the...well, in the queer community too. But in the indigenous community in particular, there's a value of inclusion, and we generally have a really strong value of including children and elders. And if you go into a space thinking about including children and elders, it's automatically accessible, because a lot of elders have limited mobility, or children have different physical needs, even if they're nondisabled. There's just a lot of things you have to think about to make a space safe and accessible and comfortable if you want to include people of all ages. It just inherently includes all body types, and I find in the indigenous community at times we're planning events, it's just such an important value, and also, the value often is community first, and not the individual first. And so we just, from a young age, in my indigenous community, were taught to think about community first, are taught to look around and see what other people need, and does everyone else have what they need? It might be different from what I need. Maybe they need more than I need, but it's just about all of us being in something together. So I have found in that community, there's a way that they're just automatically fluent about accessibility, because of those values. And I think in what I've encountered in queer community, there's a really powerful overlap where there's the queer disabled, where like me, people are both, [laughs] and so there's...again, a similar political passion that will happen there, and I think from queer community, maybe what I've learned or transferred to being disabled is the pride piece that comes with this, celebrating who you are, feeling empowered by who you are, trying to ignore the naysayers, and finding ways to wave whatever your flag is. I think that I learned some of that pride and stability from the queer community. ANNA: Yeah. Cool. So going back to, I guess, the big meaty question of this interview, what would your advice be to parents with a child who is disabled? In your case, maybe a child that is diagnosed with cancer, and with your limited experience, what would your recommendation be as a parent to other parents, knowing that parenting is a really complicated mess of many decisions? CHRISTA: So far, I think my advice is and has been...I sometimes get asked to talk to other kids who have cancer, and I know that the parents are asking me to give them hope, and let them know it's going to be okay, and that the future is bright. And those things are true, so it's twofold. My advice is to be positive and be encouraging and to celebrate that if this is going to mean a big difference for their kid moving forward, with something maybe like limb loss, or even if it's not, with just having had that kind of experience in the childhood, that it's something to feel enriched by. It's like going to a country that not a lot of people have gone to. You've seen things that other people haven't, and that's actually a gift that you can share with people. Kids with disabilities have this gift, they have this perspective that they get to share a story that maybe not a lot of other people know, and I think if parents can encourage their kids to feel empowered in that story, that that's a good thing to do. And I think when I was reflecting on my experience as a kid, I think it's also important to have the space or open a space for kids to talk about what they feel like they're missing out. For me, at the time, I missed out on a lot of birthday parties. And even just things like, there'd be a swimming party and I could go to the birthday party, but I couldn't go in the water because of my PICC line couldn't get wet. And so I would sit on the side, and there would always be another parent who would try and do something for me to make me feel special, but I knew it was kind of...I felt kind of patronized. And I think what I didn't experience was enough people saying, "Yeah, this sucks. I'm sorry you can't do that thing." So I think that's probably hard to do as a parent, because it's hard to sit with those crummy feelings and disappointments and feeling left out. But I think if I'd had a bit more of that as a kid, it would've helped me. I did a lot of that work in my adult life, and I might have been better equipped to process those times when I did really feel left out and I did feel really different, 'cause I think at the time I was trying so hard to put on a brave face, and I wasn't really invited in my family, again, who were so loving and so supportive, but there just wasn't the tone there that I could really talk about the ways that I was feeling bad about it, and the ways that it hurt, and the ways that it sucked. And for me, a lot of it was being left out and just missing out on the things that my other friends were doing and stuff at school. So I think that's probably really hard for parents to do. But if there's a way to have space for both, to find ways to celebrate these experiences, and they're painful, but getting through them is something that we can be proud of. And then also having the ability to have the moments that you maybe don't feel so proud, it just sucks. It's complex. It's complex, it always will be. And then I think anything a parent can do to fight for advocacy, any time they see a barrier, any time they see lack of access, speaking up and learning how to be as good an advocate as possible, and learning how to really develop the eye for barriers, is probably the best thing they can do. SPEAKER 1: Parenting Without Pity is a storytelling resource of podcasts, videos, and blogs that honors the experience and knowledge of disabled parents. On the next episode, Lead Producer Clark Matthews and Program Director Anna Zivarts interview Ellen and her daughter Emily from Long Island, New York. EMILY: I've always felt very lucky to have been raised by a disabled mother. Nobody ever stopped to consider how awesome it is. SPEAKER 1: You can find more from our Parenting Without Pity project at RootedinRights.org/Parents. [End of transcript]