Pick 3: Grades, Social Life, Sleep, and Coping With an Invisible Disability
This is the first instalment of SPRING Mobility’s Community Interview series, in which a young mobility aid community member has an honest chat with us about their experiences. SPRING is an early-stage social enterprise whose mission is to alleviate the barriers that young mobility aid users face. We are soon launching a pre-order campaign on canes that are easily customisable on-the-go, so that you can look and feel your best no matter where you are going. I had the pleasure of speaking with Phoenix about her experience going through university with early-onset arthritis, and I’m excited to share this with you today.
Phoenix Yu Wilkie is a Chinese-Ukrainian honours student specialising in biomedical computing at Queen’s University in Canada, having received the full-ride Chancellor’s Award scholarship. In 2016, Phoenix was the first high-school student ever to present research at the American Association of Medical Colleges conference, in which she used 3D technology to create a better and more cost-effective alternative for Transparent Facial Orthoses for severe burn victims. She is a published researcher, and is currently working as a machine learning engineer for a NEXT36-backed technology startup. Beyond this, she is a huge plant enthusiast, embroiderer, and armourer.
Although she has a seemingly unending list of academic accomplishments, her transition into university was by no means easy. At almost 19 years old, Phoenix was officially diagnosed with juvenile rheumatoid arthritis (JRA). Her invisible illness was caused by a hyperactive immune system, linked to mast cell activation syndrome (MCAS). You may see her getting around with her cane and her service dog, Onyx.
“I had a tumultuous time going into university, moving away from home while navigating health issues.”
For her, university has been a weird experience (that mirrors many of her peers’ stories). She pointed out that despite her lifelong symptoms, her formal diagnosis came very late, whereas most people with JRA get diagnosed at 6 years old, for instance. Why? Because one of the healthcare system’s big flaws is that doctors treat symptoms instead of underlying causes. With MCAS, an autoimmune issue that manifested itself through symptoms that could correspond to a variety of disorders, it took until university for her disability to be properly recognised — but “if you take a step back and look at their whole history, then it’s more obvious.” In addition, a near-death (technically, she’d died for a few minutes) accident in high school worsened her symptoms going into her degree. As such, the first 2 years have been the worst for her, what with needing to handle school work, trying to be a late teen, and managing her health.
Thankfully, Queen’s did provide accommodations. With her Chancellor’s Award, some additional barriers to her academics have been lifted. For example, an occupational therapist and psychologist were arranged for her to manage her condition. As well, in being registered with the “wonderful” accessibility services, her tests could be done in a private room, and the professors were mostly understanding — one would even kindly send her notes with a slide deck if she wasn’t able to attend a class. Unfortunately, she says, though they’re trying to help, “someone has to pay for it.” If accessibility services is not a priority to the university, accommodations are going to take a longer time to get rolling.
Phoenix also emphasised the importance of a good support network. According to her, had it not been for her friends and family, she could not have been able to live or succeed as well as she did in her first year. Some friends were very empathetic and readily there to help, such as with carrying bags or opening doors during the winter months, when her symptoms would worsen. Furthermore, social activities would often be something like going to a friend’s house for a movie night or a wine & cheese, instead of going to a club. Phoenix spoke of how lucky she was to have a group of friends so happy to adapt and to make things more accessible to everyone. “There’s always someone who cares,” she says, as Onyx enthusiastically licks the desk in front of her.
Indeed, one remark she has about having her invisible illness, is that she’s never been to STAGES or The Underground, two of the most popular nightclubs in Kingston.
“You have to figure out socially what you can or can’t do.”
On a low mobility day, Phoenix will be using her cane as well as keeping Onyx by her side. The weird stares and the constant fear of getting pushed or trampled while going out would be exhausting, so as much as she wants to try it just the once, she knows that it’s just not the right path for her health. She’s run into a few awkward situations with people her age raving on about last night’s concert at STAGES and suggesting she join next time. She chuckles to me: “I appreciate the invite but… maybe some day!”
On campus (pre-COVID), old buildings do not usually have the infrastructure in place for accessibility. Phoenix acknowledges that Queen’s has made attempts to modify the architecture, but when also trying to preserve it, only so much can be done. Not every building has 2 accessible entrances, and some of the automatic doors don’t actually work. Functional elevators are also not always easy to come by, when in a building that even has an elevator built in. Not every bathroom has an accessible stall, and at times, people will be using it as their own private space, such as the time she heard a girl talking nonchalantly on the phone inside. “I mean, how long do you wait?” Just as there’s always someone who cares, there’s always someone who doesn’t.
People at university seem to be generally open-minded and unfazed by her use of a mobility aid on campus, but it’s the public who have given her a harder time. Funny looks and unwelcome Onyx-touches aside, this is a real conversation she’s had on the bus:
Phoenix, holding her walking stick and service dog:
‘I’m sorry my disability inconveniences you.’Old lady who had aggressively tried to get her out of priority seating:
‘I accept your apology.’
Though she now gets a good laugh out of telling stories like this, it’s clear that social stigma against young people using mobility aids is a problem that pervades, and needs to leave as fast as it came (cane?).
Thanks, Phoenix, for taking the time to share your story with me on a Friday night. You’re such a star and I’m so honoured to know you. Interested readers can find her on Instagram as @jungleplanties. If you’d like to be featured in our Community Interview series, or would like to share your thoughts on how SPRING can better serve you, please contact Kaye through hello@springmobility.ca or message us on Instagram/Facebook!
