You are a former Team Canada jumper and currently a disabled model and activist. Take us through your journey on how you got here.
I could say so much, as it’s been an extreme few years. Competing on the national stage in my teens earned me the opportunity to represent Canada on the international stage, at the first ever Youth Olympic Games in Singapore (2010). At the same time, I was keeping a secret – I was having extreme back pain (that I’d thought was an overuse injury). It was my Mom who initially pushed for further investigation, where we learned I had a spinal tumor in my T8 vertebrae. I’ve now had two major spine surgeries, all within a two year span. I’ve also since been diagnosed with Ehlers-Danlos Syndrome, a rare connective tissue disease.
Can you tell us more about it?
Ehlers-Danlos Syndrome is genetic, and its a connective tissue disease that messes with collagen in the body. I have “hypermobile type” or hEDS, where many joints in my body move beyond a natural range. It differs from flexibility, as joint dislocations, complications, and pain are a part of EDS. Connective tissue is pretty much in every part of the body, so there’s a lot I have to contend with.
Having had two spinal surgeries and then receiving a diagnosis for Ehlers-Danlos Syndrome must have been an incredibly difficult time in your life. What got you through it?
Honestly, what got me through it was my Mom. She’s incredible when it comes to leaning into the discomfort of the unknown. A bunch of things were scarier during the first surgery, as there was no confirmed diagnosis of what type of tumor there was in my spine. It took two weeks after the surgery to get the biopsy results and learn that I was in the clear. She’s been a great support, and a great advocate.
While recovering you said Netflix and magazines helped you pass the time. Did you see enough representation of people with disabilities?
Almost every time there was a disabled character, and that was a very small fraction of the time, they were played exclusively by able bodied people. In magazines, able bodied Kylie Jenner was put in a wheelchair, as though a disability is a ~ fashion accessory~ one can put on and take off when they’re done with their edgy statement. Disabled folks experience discrimination, are infantilized, desexualized, and are constantly questioned and invalidated as a result of ableism, so it was heartbreaking to see people ‘playing’ disabled like this was all optional.
What kind of changes would you like to see in the Fashion Industry?
I feel like the changes I’d like to see are beginning to happen right now. With the resources available these days, I really think folks are learning that it is important to be mindful of appropriate representation. I’m seeing models like Nyle DiMarco, Jillian Mercado, Lauren Wasser and Winnie Harlow in notable campaigns. Even just the other day, Martha Hunt shared more about her experience with scoliosis. There’s room for more vulnerability.
Share something you feel is important for others to know about you.
I do cry still about this, even though I feel confident and strong in my identity as a disabled femme. There will always be a stranger on the subway that makes accessing the blue seats a battle, or someone in a doctor’s office waiting room that will begin to ask invasive questions, or a stranger at a party who’s opening line is about my disability. Disabilities do need to be seen and validated as that is how accommodations are met and barriers eliminated, but I appreciate it when folks are asking about my needs instead of doctor-y details. I’m putting myself out there as a model to help educate and change the way disabled folks are seen.
Ft Rachel Romu @peggilepage_models
Shot + Styled by Alexandra Votsis @alexandravotsis
Hair + Makeup by Eryn Shannon @esbridal