Words by Lauren Pires
“I don’t know, ask her, she’s the coordinator who knows what’s going on.”
I was holding a clipboard when I heard the voice from about ten feet away, at 8am on a sunny Saturday morning. I was the first of my team to arrive at the largest outdoor venue in my city of Ontario, Canada, to meet our festival event sponsors loading in for the day. I was 23, and I was terrified. I’d worked the last three months at my first “real” job out of university, an arts organisation that runs one of the largest South Asian festivals in Canada. A festival I was excited for, but also dreading.
My heart was excited, because we had an awesome concert and laser show planned, and we were expecting thousands of people. But my body was dreading it because I was about to work a sixteen-hour day on my feet, which I wasn’t entirely sure I could do. It was exactly the kind of thing I’d always avoided.
I was born with Central Core Disease, or CCD, a rare neuromuscular disorder where some of the mitochondria in my muscle cells are depleted. You might have seen the meme that the mitochondria is the powerhouse of the cell – converting food into energy, and energy into strength. But I have about 33% of the strength of the average person, so I have to work harder at things most people take for granted. Things like being on my feet for long hours, carrying inventory boxes, and going up and down the stairs of stages and production trailers – things related to my actual job of running a festival.
For me, CCD is an invisible disability – you probably wouldn’t notice anything about me is different until I try to open a heavy door, or get up from sitting on the ground. According to the World Health Organization, 16% of the world’s population, or 1 in 6 of us, experience a significant disability. That’s an estimated 1.6 billion people. The disability community is the largest minority group in the world, and the only one that anyone can become a part of, at any time.
Up until two years ago, when I spoke publicly about my disability for the first time in an inspirational speaking competition, I hid it as much as I could – people who worked with me for years had no idea. Because when part of your job is being onsite for 16 hours running a festival, how do you tell your coworkers you have a physical disability? I didn’t even tell the Executive Director who hired me, until after I’d already worked there for a month.
You might be wondering why I accepted a job with so much physical activity in the first place, as opposed to a regular office job. Growing up, I had to avoid the classic restaurant or retail first jobs, because I knew I’d be too sore being on my feet that regularly. But the key word there is “regularly.”
The main reason I decided to accept the festival job was that it was mostly remote work with flexible hours. The festival itself would be exhausting, but that would be a once-a-year thing to push through. Leading up to and after that, I’d only have to go into an “office” once a week – outside of that, I’d be able to work from home, and not have to adhere to a 9-to-5 schedule. It’s kind of like a sprint vs a marathon – I can push through a burst of a busy tiring time because I can rest more outside of festival season. Whereas with an office job, I’d be expending energy more steadily for a longer time, with a commute every day, which is difficult when you’re working with 33% strength of the average person.
It’s important to remember that remote work and hybrid options are an important part of keeping workplaces accessible to people with disabilities. People with disabilities are consistently under-represented in the workforce, but many of us make great employees – living with a disability requires a certain amount of planning, project management and resourcefulness that many non-disabled people don’t have to think about.
When I was in university in my Event Management class, I never wanted to work in events. But after working that first festival job, and in over 11 years in event-related careers since then, I realized I’m great at events – likely, partly because of my disability. I’ve spent my whole life managing my daily schedule and energy, to make sure I’m able to prioritize everything I need to do, which makes me detail-oriented and able to project manage work-related aspects too.
In some ways, non-disabled people could consider my disability a weakness – it is, after all, a literal muscle weakness issue – but in other ways, this weakness is also the cause of my strengths. And whenever the internalized ableism of comparing myself to non-disabled people sneaks up, that’s what I try to remind myself of. My muscles may be weaker, but having to always work harder at everything has made my determination and resilience stronger. My strength might be at 33%, but I live 100% of the life I want. My mitochondria might be depleted, but I’m my own powerhouse.
I didn’t expect while working at my first festival, and at every festival since then, that I’d love it. I loved watching thousands of audience members dancing and cheering, even when I was sore from being on my feet so long. I loved giving incredible Bollywood fusion music and dance performances a platform, because growing up, I’d always wanted to work in the arts. And I loved the feeling of accomplishment I got from doing something that I, at one point, never thought I’d physically be able to do.
This past summer, I worked my last festival. A couple weeks ago, I left my job of 11+ years to pursue another career I never thought I’d have – invisible disability speaker. For over 30 years, I hid my disability, especially at work and in my professional life. But it was my festival Executive Director who hired me who first told me that my “weakness” is actually my strength. And now, by sharing my experiences and being a voice for invisible disabilities, I hope I can help other people realize that too.
