You can’t miss Rachel Romu, and that’s the point. Almost six feet tall with impossibly long legs and ropes of strawberry blonde hair, the 25-year-old is striking. It takes a while to notice the cane Romu uses to help navigate. Wearing a sweater that reads, “The Future is Accessible,” Romu immediately notes all of the ways in which First and Last Coffee in Toronto, where we’ve chosen to meet, has thought about accessibility. “There’s no step to get in the front door and enough turn-around space at the counter for someone using a mobility device,” they say. For Romu, who uses a mobility aid on a daily basis, these design choices matter.
Romu hasn’t always needed these accommodations. Growing up in Thunder Bay, Ont., Romu was on her way to becoming a track and field star after landing a spot in the Youth Olympics in Singapore in 2010. But that all changed in 2016, when Romu was diagnosed with Ehlers-Danlos Syndrome (EDS). EDS is a connective tissue disorder that results in chronic pain, fatigue and joint dislocations. This diagnosis came after Romu’s second spinal surgery. It was clear to Romu that there had to be another explanation for the pain felt during the recovery process, and so Romu pressed for further testing. Unfortunately, Romu had to find a new doctor before receiving the diagnosis and necessary care.
After saying goodbye to track and field, a new opportunity presented itself when Romu saw Kylie Jenner pose in a wheelchair on the cover of Interview magazine. Romu unpacks some of the problems with Jenner’s presentation of disability: “If you’re making a statement about the disability community without the involvement of that community, you’re perpetuating a stereotype of disability.” Romu used a cane to walk the runway for Hayley Elsaesser and Lesley Hampton at Toronto Fashion Week in 2018. For Romu the stakes of Jenner’s performance were both personal and political, “I didn’t get to take my disability off… Nobody was applauding me for my mobility device,” Romu says. Instead, you’re expected to perform the role of the model minority who is relentlessly positive despite all of the challenges they now face. “Positivity can be toxic,” Romu notes, “because it can rob you from taking a break from being brave. I wasn’t allowed to have a bad day and be anything other than completely stoic.”
Romu felt this pressure at the start of modelling. “Being in front of the camera at all was vulnerable. But creating visuals and images where I felt like being disabled was beautiful was really important,” they say. The modelling industry has been routinely criticized for promoting unhealthy standards of beauty — and while Romu is all too aware of these pressures, modelling has opened the door to self-love. And more than that, it’s offered Romu a space to bring disability education to the masses. All you need to do is go to Romu’s Instagram (@rachelromu) to see how, alongside a beautiful photograph from a shoot, the model uses captions to explain what it’s like living with chronic illness and disability.
Two years after bringing disability to the runway, Romu is working to change the entertainment industry by making music events more accessible. Despite having played guitar since a young age, it’s only in the last year that Romu start- ed performing on stages big and small. Now there are new challenges to tackle, like stages without stairs or ramps. In 2018, when preparing to play Pride Toronto, Romu worked with the planning team to ensure that accessibility was at the forefront and that stages were built with all bodies in mind. Looking ahead, Romu imagines an accessible future that goes beyond automatic doors and ramps. “Free public transit, a focus on zero-dollar healthcare, not waiting nine months for a specialist and affordable housing. We need to make it so that people can move freely through the world and receive the care they need,” Romu says.
Being in front of the camera at all was vulnerable. But creating visuals and images where I felt like being disabled was beautiful was really important.