'I have always sat in the in-between'
Photo by Rachel Romu
By Louise Kinross
Last month, Toronto filmmaker Mari Ramsawakh won TVO’s Short Doc Contest for their film Fluid. Fluid explores identity and how it can’t be contained in simple boxes: ‘I have always sat in the in-between,” Mari says in the film. “Man, woman; boy, girl; straight, gay; too disabled, not disabled enough; not Asian enough, not Caribbean enough.” We spoke about Mari’s multiple identities, and how health professionals and parents can help children feel comfortable in their own skin.
BLOOM: Congratulations on your film! Why did you call it Fluid?
Mari Ramsawakh: Fluid was a word that I identified with for a long time. I described my gender identity as fluid, and my sexuality as fluid. And as I’ve aged, I’ve started to realize that my disability is also fluid, in the sense that it’s never in a static state in how it affects me in the day to day.
I view my whole identity as fluid. The world imposes a lot of binaries on us: man, woman; gay or straight; abled or not abled. Even my cultural identity sits between two things: My family is from the Caribbean, but before that we were from India. So we have a Caribbean identity, but when people see us, they assume we’re South Asian. There’s been a lot of community building around the South Asian community and the Afro-Caribbean community, but there hasn’t been a lot of attention put on the Asian-Caribbean communities that also exist. Even my cultural identity has always been in a mid point.
BLOOM: What was the greatest challenge for you growing up with a disability?
Mari Ramsawakh: My situation was a little unique in the sense that my disability was invisible to most people who didn’t know me. I had a weird gait in my walking, but I had the ability to walk, and I didn’t use a wheelchair or leg braces. I spent a long time trying to distance myself from my disabled identity. I kept it from a lot of my friends growing up, and I didn’t get actively involved in the community, because I felt I wasn’t disabled enough to connect with others like me. So growing up, the biggest challenge was learning to accept that I had different needs and limitations, but that didn’t change my value as a person.
BLOOM: I noticed in one of your photos that you use a crutch now.
Mari Ramsawakh: I have my forearm crutch, and recently I’ve gone back to using a cane. I only started using a cane three or four years ago, and that was because I was experiencing a lot more pain. As I got older what happened was my body was over compensating in some areas to maintain my walking. I’m now dealing with a lot more joint pain and wear and tear on my body that didn’t affect me as much as a child. I had pain as a child, but it wasn’t enough to stop me from doing a lot of the things I wanted to do. Now, my pain can get so bad that I’m throwing up.
I use the cane depending on my pain and energy levels, and if I have a longer day ahead of me where I’ll be doing distances or a lot of standing. The cane helps me not fall and injure myself further, and it helps keep some weight off my right leg, which I consider my really bad leg. It’s slightly weaker, and where I experience most of the pain.
BLOOM: I think you would find an interview we did with a doctor here—Dr. Paige Church—interesting. She has spina bifida, but, like you, it isn’t visible. And for years she worked in our spina bifida clinic, but she didn’t talk about her own experience. Then she had kind of a coming out about it, and recognized the value her own experience brings to her patients.
Mari Ramsawakh: I love the idea of having someone from the community being part of the health-care team working with that community. I am always behind the idea that people within their own communities should be the ones helping those communities. I love to think there’s a doctor with spina bifida working with people with spina bifida.
BLOOM: Growing up, what parallels, if any, did you find between being disabled, non-binary and racialized?
Mari Ramsawakh: The biggest challenge with all of those identities is how others react to you, and respond to those identities. I felt like I had to distance myself from my other identities earlier in life, including my racial identity.
I grew up in a suburb outside Toronto and it was a predominantly white community, so growing up I really tried to hide my Caribbean family and culture and heritage. But just like with my disability, hiding it was causing me a lot of emotional pain. Over time I got to learn more about my Caribbean culture and history. I started to take pride in it, instead of distancing myself from it, and I felt this huge sense of relief.
I started to come to terms with other aspects of my identity, and realized they aren’t 'bad' parts of me. They’re the parts who make me who I am. They make me interesting, and give me a perspective that others don’t have.
In terms of parallels, having different identities means having a different perspective from the people around you. You tend to notice things that they might not, because it doesn’t affect them.
BLOOM: Recently I read a story by a gay professor who is disabled, who said he didn’t find much space in the LGBTQ community for disability. Do you find yourself accepted in both communities?
Mari Ramsawakh: Having multiple identities does make it more difficult to find one community to sit with that kind of gets you completely. I actually wrote a piece for Xtra about how accessibility is such a big issue in the queer community and how it affects queer disabled people who are trying to be a part of that community but feel isolated from it.
BLOOM: How did you experience coming to what was then Hugh MacMillan as a child?
Mari Ramsawakh: Most of my care there was done during annual checkups. Because we lived outside of Toronto, it was a 45-minute drive in and we would set up all of my appointments to be in one day. So I’d come in the morning, see one doctor, go through tests, see another doctor while waiting for things to come back from radiology. I’d see a physiotherapist and a urologist and a few others as well.
BLOOM: So was it just a pain?
Mari Ramsawakh: It was. I really associated Bloorview with discomfort, and spending all day waiting and moving from doctor to doctor. I especially hated getting my ultrasounds done where you fill up your bladder while they’re testing you. It’s very uncomfortable.
Now I understand what an amazing resource it is, and how it gave me access to things I wouldn’t have had otherwise. For example, I had access to a child psychologist to help with mental health issues and especially as someone growing up with so many things going on, that was invaluable.
BLOOM: Did you see a psychologist here?
Mari Ramsawakh: It was Andrea Snider.
BLOOM: She’s still here!
Mari Ramsawakh: That’s so cool. She was a huge part of my life growing up.
BLOOM: What was it about how she worked with you that you valued?
Mari Ramsawakh: She was just a great listener and she did a really good job at making me feel safe talking to her. She made me feel as though my feelings, and the thoughts I had on them, were all valid and important.
I started seeing her when I was nine and I was going through my first bout of depression. At one point I was seeing her twice a week. When I was in high school and struggling with my sexual identity and school and socially, having Andrea there was incredibly helpful.
There aren’t a lot of people my age who got to experience going to a therapist as early as I did, and I realized rather recently that it was a huge privilege for me. It gave me all of these skills and tools from a really early age to cope with all the things I was dealing with.
There’s a pretty tight-knit disabled community on Twitter, and I was tweeting about this and others were coming forward and saying they wished they‘d had something like that growing up. To have a resource hub they could go to when having a problem—and even for their parents to go to and learn about their disability and connect with all of the resources in one place.
BLOOM: How can health professionals better support kids with disabilities in finding their identities, especially if they aren’t conventional?
Mari Ramsawakh: By being able to talk about those things, or point you to someone who can. I found that when I was younger, the doctors weren’t interested in that sort of information. It never really came up.
BLOOM: So you weren’t asked a lot about your life outside of your medical condition?
Mari Ramsawakh: No. But even when I was going through puberty and all of those fun ‘Are you sexually active?’ questions started happening, they assumed a kind of normative lifestyle. The assumption was that I identified as a woman because they perceived me as a woman, and that I would be straight and having all male partners. Even the assumption that I would need to take folic acid, because I was sexually active and could get pregnant, was very weird for me, because I wasn’t having that kind of sex. I thought ‘Do I really need to keep taking this folic acid if I’m not having that kind of sex?’
BLOOM: But there wasn’t any way to broach it?
Mari Ramsawakh: Yeah. I went through a lot of my life where these identities were things to hide and not talk about, and that was really reinforced by the fact that nobody asked me about them and it wasn’t brought up in any way.
BLOOM: Is there some way a doctor could word a question that would make you feel safe to be candid?
Mari Ramsawakh: I’m not totally certain. With Andrea I felt completely safe and able to talk to her about these things but that might be because that’s part of her job as a mental-health professional. I guess to reframe the questions to be more specific to their point. So maybe ‘Is it possible that you are pregnant now, or could be pregnant in the future?’ rather than ‘Are you sexually active?’
BLOOM: How could health professionals better support kids with multiple identities?
Mari Ramsawakh: I definitely felt my biggest issue with doctors was that they weren’t spending that much time getting to know me, or me getting to know them. It didn’t feel like a relationship necessarily. They became these adults I would see once a year who would ask really personal questions, saw me for 10 to 15 minutes, and then they’d be gone.
Maybe developing a relationship with their patients. It’s not an easy thing to do, especially if they have so many patients every day. It’s a lot more complicated than saying ‘Talk to us more.’ I do think it would have been helpful if I felt I could have a conversation with them, even in a friendly, ‘Hi, nice to see you’ sort of way, instead of being straight down to business.
A lot of the interactions I had with the doctors were between the doctors and my parents. Especially as a younger child, I was sitting off on the table and watching everyone talk about me, but not necessarily to me. I never felt involved in the conversations.
BLOOM: How did you get more comfortable in your own skin over time, and what advice would you give other disabled youth who may be struggling with that?
Mari Ramsawakh: I only started getting comfortable in my own skin and identities once I started to see more people like me. So, for example, when I was at university, I volunteered at the Sexual Education Centre. I was very comfortable with my queer identity at this point. I had seen so many queer people on TV and in real life. They weren’t so hidden from view.
But for things like my gender identity, I didn’t even know non-binary was a thing till I was 20 or 21, and then I was like wait, that sounds like something I could be. It was being aware and seeing people like me.
Volunteering at this centre, I met a few other disabled people who were more visibly disabled. They were very open with me, and I started to talk to them and ask questions and I realized we shared experiences that I didn’t think other people were going through. I started to realize that I wasn’t going through something weird or different, I just wasn’t hearing those stories. Once I started actively seeking out those stories, I became more and more comfortable with myself.
The advice I would give would be to get to know your community, and build community with each other.
I wish I had developed a spina bifida community growing up, instead of waiting until my adulthood. I feel a lot of the things I struggled with as a child I wouldn’t have struggled with as much, if I had a community of support from the start.
Getting involved in my own interests also helped me meet other disabled people who have the same interests. So it's not just a shared identity, we share interests and values and beliefs.
BLOOM: How can parents best support their kids with multiple identities?
Mari Ramsawakh: It’s having conversations. I found that things were easiest with my mother when we would talk about them. Before I was able to talk to my mom about my sexuality, which was part of why I kept it hidden, I didn’t want my parents to find out.
But if I felt like I could have talked to them from the start, I wouldn’t have gone through the same journey, it would have been different. It’s important that parents are open to the idea that their child might have different identities outside of their disability, and are willing to have those conversations from an early age. If you wait too long, those feelings of ‘should I be talking about this?’ or ‘maybe I should be hiding this’ come up.
Talk about it early and figure out what your individual child’s needs are and how to best support them. Everyone will need support differently. The best way to find out how to support them is to have those conversations.
BLOOM: I read your Nuance piece about how you got into modelling. Why was that important for you?
Mari Ramsawakh: All my life I never really saw images of people who looked like me in the media and so I grew up with a very low self-esteem. I thought nobody could find me attractive, because not only did I have this disability but I was also shorter than everyone else, and there were these other aspects to it. I started to realize the reason I wasn’t perceiving myself as being attractive was because I wasn’t seeing images of people like me being revered as much as those normative images of what a person is supposed to look like. I was friends with a disabled model named Rachel Romu who walked in Toronto Fashion Week with their cane. And I saw how much of an impact my friend’s work had on me.
BLOOM: I will send you a link to our Dear Everybody campaign. This year it focused on representation of people with disabilities in ads and mainstream media. What kind of work do you do right now? I know you’re involved in many things—as a podcaster and filmmaker and writer.
Mari Ramsawakh: Right now I’m completing a placement with CBC. It’s an internship for people with disabilities to gain access to entry-level positions that will help us launch our careers in media. It’s in response to the lack of representation in media—both in front, and behind, the camera. I’m a digital researcher and I work on extra blog content. So if we’re promoting an episode before it goes live, I may do some interviews and research and put together a post.
BLOOM: What are your future work dreams?
Mari Ramsawakh: I’m most interesting in storytelling as a whole. I love fiction and non-fiction. I love making my podcast and film-making. I love books. Storytelling is what I’m drawn to and why I have my hands in all things.
BLOOM: What did you study at university?
Mari Ramsawakh: English and Anthropology. But I dropped out, because it was too difficult to manage supporting myself, going to school and dealing with health issues. I assumed when I did that that it would be the end of my career, but it didn’t end up being that way.
BLOOM: Not at all. It’s amazing to see all of the projects on your website. I noticed your website is called Indivisible Writing. Is that based on the idea of fluidity?
Mari Ramsawakh: It’s linked to the same idea of multiple identities that I have, and how I can’t separate any of those identifies from any aspect of myself. So when I talk about disability, I’m talking about my perspective as a racialized and queer person. I really liked the idea that no part of me could be divided up and separated. I was all of these things at once.