Interview with Riel Sturchio: On Cerebral Palsy, Identity, Shame, and Stigma within Non-normative Bodies

Shadow. Riel Sturchio/Alexia Foundation

Shadow. Riel Sturchio/Alexia Foundation

This past April, Riel Sturchio was awarded a Student Award of Excellence Grant for Chasing Light, a collaborative photographic project with her twin sister about their experiences with cerebral palsy, identity, shame, and stigma within non-normative bodies.

In this new interview with Sturchio, we learn how this collaboration adds to the photographic project, and the ways in which they are using their work to foster discussion around these issues.

Alexia Foundation: What made you start working on this project?

Riel Sturchio: I started working on this project way back while pursuing my undergraduate degree at Maine College of Art in Portland, Maine. I was learning how to use a film camera, and one of my first assignments was to more or less photograph what I knew. So I started to photograph my family, with an emphasis on my sister. I realized that I could communicate the level of detail and emotion I was trying to evoke.

Laying Together. Riel Sturchio/Alexia Foundation

Laying Together. Riel Sturchio/Alexia Foundation

Alexia Foundation: What is this project important?

Riel Sturchio: This project is about the relationship between my twin sister, Bianca and I, with a focus on her lived experiences of being a disabled, queer, female-bodied individual.

This project is important because it allows Bianca and I to work together on something that we are both passionate about: communication, social awareness, and destigmatization of illness, disability, and sickness. This work also gives us a platform to complicate concepts of heteronormativity, expected social behaviors, and gender.

Web. Riel Sturchio/Alexia Foundation

Web. Riel Sturchio/Alexia Foundation

Alexia Foundation: Why is it called Chasing Light?

Riel Sturchio: It’s called Chasing Light really because when we started working more rigorously, we would take walks together and follow the light around the city. It felt like we were chasing it around, and in some ways we were.

I thought it was fitting because it has so many layers to it. Light is often a metaphor for relief, calmness, health, most things that can be associated with balance. I think we’re always in some kind of flux with this light.

If you’ve ever experienced long term pain, disability, or chronic illness, it can seem like you’re always reaching. Sometimes you find it, sometimes it lands on you, and sometimes it’s a lifelong dance of being in and out of it. I am taken by the golden hour both in early morning and afternoon. I find it inspirational and hopeful to witness, so there is a large built-in element of hope and inspiration.

Feet. Riel Sturchio/Alexia Foundation

Feet. Riel Sturchio/Alexia Foundation

Alexia Foundation: How does your sister contribute to the project?

Riel Sturchio: Bianca contributes by making herself available, and allowing me into the privacy of her space and her experiences. Providing the opportunity for visibility of a body going through lived experiences is such a unique and private mostly internal life that rarely has an audience. Bianca also works with me on choosing images to show, on preparing written texts, and always has input about what is being shown and why.

Tomatoes. Riel Sturchio/Alexia Foundation

Tomatoes. Riel Sturchio/Alexia Foundation

Alexia Foundation: Why doesn’t your sister take the photos herself? What does the collaboration add to this project?

Riel Sturchio: Well, in many ways it’s not an accessible medium for her. She has cerebral palsy which leads to mobility challenges as well as joint pain. Handling a film camera in which this project exists, is just not doable, we’ve tried. It’s more frustrating than anything else, and she doesn’t enjoy that.

Instead, we’ve learned to communicate better. If she sees or understands something that I’m not seeing, I try my best to make sure it’s captured on film. I’ve spent over 10 years learning the ins and outs of photography, so I have a pretty large skill set that allows us to seamlessly work together.

Velvet Shirt. Riel Sturchio/Alexia Foundation

Velvet Shirt. Riel Sturchio/Alexia Foundation

Alexia Foundation: You mention in your proposal that you’ve used the images to lead discussions about body image and disability? How many of these have you led or do you plan to lead? What do people talk about in these discussions?

Riel Sturchio: Bianca and I went to the University of Vermont for a solo show and we held several discussions with the students. Conversations varied from group discussions, story-telling, to one on one private conversations.

We are a part of an exhibition called “Body is a Bridge” opening up at the Visual Arts Center in Austin, TX (Nov 3rd—December 9th) where this work will be featured, and more discussions will ensue. Sometimes these discussions are aloud in person, and sometimes we provide information in a written manner.

For this upcoming exhibition we anticipate an interview-style public discussion between Bianca and myself, and we also have a self published limited edition take-away zine which will be available for free during the show. The zine is filled with literature all written by Bianca about her experiences, which also shares hopes, dreams, fears, challenges, and resources for others.

Broken Tailbone. Riel Sturchio/Alexia Foundation

Broken Tailbone. Riel Sturchio/Alexia Foundation

Alexia Foundation: What are your plans for Chasing Light?

Riel Sturchio: I’d love to keep working on Chasing Light indefinitely. It’s a project that is on and off, depending on availability and whether or not Bianca is comfortable being photographed. I feel very sensitive to her wants and needs, and she often gets to decide whether we are actively working, or waiting for the next appropriate time to work together.

Stomach Pain. Riel Sturchio/Alexia Foundation

Stomach Pain. Riel Sturchio/Alexia Foundation

Alexia Foundation: What did winning the Alexia grant mean to you?

Riel Sturchio: The Alexia grant was truly a blessing and a gift! It allowed me to help work on our project this summer, and afforded me extra rolls of color film. I am excited to be a part of the Alexia community, and I feel grateful that resources like this exist.

The Alexia Foundation supports our grantees to produce stories that drive change. You can read more interviews with our grantees here.

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