We’re excited to introduce you to the always interesting and insightful Lauren Pires. We hope you’ll enjoy our conversation with Lauren below.
Lauren, looking forward to hearing all of your stories today. Let’s start with the story of your mission. What should we know?
One of my favourite quotes is from Brooklyn Nine-Nine, when Captain Holt says to Rosa “Every time someone steps up and says who they are, the world becomes a better, more interesting place.”
I was born with a rare neuromuscular disorder called Central Core Disease (CCD), which results in me having about 33% of the strength of the average person. Not 33% less strength, just 33% strength. Basically, there are areas in my muscle cells where mitochondria are missing, making it more difficult for my body to convert energy into strength, so I have to work harder at things most people take for granted.
For over 30 years, I tried to hide my muscle disability as much as I could. Close friends knew, but outside of that I’d rarely talk about it or tell people, unless I had to because I couldn’t hide it any longer. I was always nervous to tell classmates, employers/coworkers, dating prospects or anyone for the first time, out of fear that they’d think I was using it as an excuse to get extensions on assignments, or not pull my weight, or that I wasn’t a good partner prospect because of having to manage my energy and physical abilities. It was kind of my biggest secret.
Up until September 2022, when I competed in a virtual Speaker Slam, North America’s largest inspirational speaking competition. The theme was Impact, so I shared a story about how my CCD impacts my life. In my case, it’s an invisible disability – I don’t use any mobility aids, and you probably wouldn’t notice anything about me is different until you see me try to open a heavy door, or get up from sitting on the ground, or walk up a flight of stairs. So there were a lot of people in my life who actually didn’t know I have a disability at all – coworkers I’d worked with for years, the friends and family of my ex-boyfriend of 4.5 years, I think even some of my own extended family, if they were born or married into my family in the last 15 years or so.
Because so many people in my life would be finding out my biggest secret once I posted my speech on my social media for the competition – and because I knew it would continue living there and on YouTube after the competition, for people to potentially watch before they even meet me in person – the idea of posting it was terrifying. I was really nervous about people seeing it as a weakness or seeing me differently, when I’d spent years trying to cover it up and fit in, wanting to be “normal.” I recorded 17 takes of my speech and submitted it on a Friday night, and was supposed to post it on my social media on the Monday for “Inspiration Day.”
A big part of me considered skipping the social media part – I’d still be entered into the competition, but nobody would know about it aside from the Speaker Slam team and judges. But I’d spent days writing my speech, and recorded SEVENTEEN TAKES, and engagement on my social media posts about it would help my chances in the competition. I figured if I came this far, I might as well go all the way.
What happened when I posted my speech as a public video on my Facebook and Instagram was completely unexpected – I got the most supportive, excited, and heartwarming comments I’ve ever seen, from not only the most eclectic array of people in my life past and present, but also from strangers. Old classmates from elementary school, women I had done tap dance classes with in high school, my driving instructor from ten years ago – so many people, some of whom I hadn’t seen or spoken to in years.
But the best part, that I hadn’t anticipated at all, was reading comments from other people who have CCD around the world. Because it’s a rare disability, I’ve never known anyone else with it in person, and I’m in a Facebook group for people with CCD that has about 1400 members worldwide. So many people in the group commented that I perfectly summed up what our lives are like, or that my story gave them hope for what kind of life might be possible for their toddler who has CCD, or that they were going to send my speech to their family members who they’d had trouble explaining their disability to and its effect on them. I had never thought about the impact my story might have on people who can actually identify with it. I was so focused on my fear of people finding out and seeing me differently, that it didn’t occur to me some people would see it and feel the same.
Now, I feel like it’s part of my mission to encourage people to step up, say who they are and share their own story. For one thing, it’s surprisingly liberating to not focus on hiding an aspect of your life that helps shape who you are. We all have parts of ourselves or parts of our lives that we can’t control, that we’re afraid to share or be judged on. Maybe it’s a physical or mental health condition, or a family or financial situation, or an aspect of our appearance. Maybe it’s temporary, or maybe like me, it’s not. But in accepting these things about ourselves and sharing them with others, we can build empathy and inspire others to do the same. You never know who you’ll make feel seen or will be able to relate to your story. And of course, like Captain Holt says, it really does make the world a better, more interesting place.
Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers.
My name is Lauren Pires, and I’m an Invisible Disabilities Association ambassador and 2023 Inspiration Award winner, invisible disability speaker, and PR & Media Lead for the largest South Asian festival in Canada, #BollywoodMonster Mashup. I live just outside of Toronto, Ontario, and I have a university degree in Media Studies and diploma in Public Relations. I also love glitter and say “yay” a lot. Like, a lot-a lot.
As I mentioned, I was born with a muscle disability and have about 33% of the strength of the average person. With CCD, the mitochondria in my muscle cells is depleted, making it more difficult for my body to convert energy into strength, so I have to work harder at things most people take for granted. But, even though I was born with it, I actually didn’t know any of that until I was about 20. I knew I had some kind of muscle disability, but I didn’t know what or why, because I was undiagnosed until I was 12, with no explanation for why I couldn’t run, or jump, or carry stacks of textbooks. At 12, I got a misdiagnosis, and at 20, I had my third muscle biopsy and learned I have CCD. When I was 27, my neuromuscular specialist mentioned after a strength test that I’m at about 33% of the strength of the average person, and it blew my mind. Nobody had ever quantified it to me before, so aside from it being kind of devastating to hear I was THAT far off from the average person, it was also surprising to hear I’d been living my life like that. A life where I’d graduated university, held a full time job, had an active social life and lived alone for years.
A lot of my life has been doing things people never thought I’d be able to do, because I wanted to and believed I could (thanks in large part to my mom), do them. Because I’ve grown up with my muscle disability and never knew anything else, I always had to push myself to keep up with what I deemed was “normal.” When I was born, I was in the NICU for two months, experienced cardiac arrest, and was baptized, because doctors didn’t expect me to live. When I was a kid, it was hard for me to participate in gym class and get all my homework done on time, because I needed so much more rest in between exerting than the average kid (and I found most activities more exertion for me than for others). When I was growing up, a family member asked my mom if I’d be able to go to university or have a full time job. “Of course she will,” my mom said, “I’m not going to let her believe otherwise.”
After I graduated university and was looking for a job, I came across a 4-month contract role for a PR Coordinator at a nonprofit arts organization that runs a Bollywood festival. I had done an Event Management course in university and hated it – events have way too many details to coordinate/things that can go wrong, and you’re on your feet a lot for long days. Even before I graduated, I told myself events were the ONE thing I didn’t want to do.
But it was hard to find a paying job in PR as a new grad, and I figured maybe doing PR for an event could be different than organizing the event itself, so I applied. They ended up offering the role to someone who had years of experience, but the Executive Director was impressed with my interview, and offered me a role…organizing the event itself. While they were looking for a PR Coordinator, they also had a 4-month contract role open for an Event Coordinator. I figured as a new grad I could do almost anything in my field if I was finally going to get paid, so I took the job.
Aside from running on adrenaline and sheer force of will, I’m not really sure how I got myself through the 16-hour festival day, speed-walking back and forth across the 30,000-person capacity outdoor square of the festival venue. It’s definitely a job I NEVER thought I’d have, partly because I absolutely never thought I’d physically be able to do it. I was sore and couldn’t walk properly for a week after the festival, but it was also one of my proudest accomplishments, and yet another thing I did that people, including myself, never thought I’d be able to do.
In terms of how I got into speaking about invisible disabilities – despite my mom saying for years that I should share my story, that was also something I thought I’d never do. But then over the pandemic, I came across Speaker Slam, North America’s largest inspirational speaking competition, which was running virtual competitions at the time. I watched dozens of speakers in the live virtual shows, and videos of speeches from pre-pandemic in-person shows, sharing their own life stories – and the speakers who always particularly struck a chord with me were those talking about their disability. A professional paddle boarder who was suddenly impacted by a disorder that affected his balance, a psychologist who was advocating for parents with disabilities who then experienced a car accident that left her paraplegic as a single mother, a woman telling a story of how her vision impairment as a child wasn’t recognized until she was in middle school and having to come up with work-arounds to execute her daily life – I had never heard people talk openly about their disabilities before, and I had always tried to hide mine.
Eventually, I was encouraged into competing in Speaker Slam’s last virtual competition of 2022 on the theme of Impact, to tell a story about how my muscle disability impacts my life. While I didn’t make it into the top ten, I was one of the top 3 Inspiration Day winners (I got the most views and some of the most engagement). In March 2023, I was encouraged again into competing in their final virtual competition, before they moved back into in-person events as they had pre-pandemic. I was hesitant again to write a new speech to post and share, but the theme was Body Beautiful which felt like a fit, and I knew I would never enter to compete in their in-person events on a real stage. I figured since it was their last ever virtual show, I might as well try it again.
I didn’t expect that this time, I actually would make it into the top ten and compete in the virtual livestream show, and I was absolutely floored when I came in second place with my story about dating with an invisible disability. The wild part was that the first and second place winners progress to the Grand Slam inspirational speaking competition finals in November. I competed virtually because I figured there was no way I’d ever compete in person, and then won my way into their biggest in-person event of the year.
After it set in that I’d be competing for the title of Inspirational Speaker of the Year, I decided I should start doing more to raise awareness about invisible disabilities – partly because I didn’t want to get to the final competition and feel like a fraud who didn’t deserve to be there. All of the other competitors in the Grand Slam so far are either life, wellness or career coaches, or keynote or professional speakers, and I’m kind of the only one who has a 9-to-5 in a mostly unrelated field, who just happens to have a story. Before I shared about living with my muscle disability in my first Speaker Slam, I actually actively thought nothing about my story was interesting at all, and that nobody would care to hear about my regular life. I had never imagined a life where I actually talked about my disability publicly.
I didn’t know where to start, so I typed “invisible disabilities” into the Instagram search bar. @InvisibleDisabilities, the handle for the Invisible Disabilities Association, a nonprofit based in Colorado, came up. That seemed like a good enough start, so I followed them and left it at that. A few days later, they posted that they were opening registrations for their Walk & Roll Fundraiser for National Mobility Awareness Month in May. A fundraiser seemed like a good way to start raising awareness and make an impact, so I signed up.
Since I have 33% of the strength of the average person, a lot of my life is about managing my energy. The most I walk all year is always on my festival days, since our venue is a large outdoor square with a 30,000-person capacity, and I’m there for 15-hour days. So I decided to walk the equivalent of four festivals (based on what I’d walked for my last festival at the time) within the month, which worked out to 74,000 steps, and to raise $1,000.
By some miracle, and having the most amazingly supportive family and friends, I hit my goal in less than 48 hours. I raised it to $2,000, and posted updates about my walking and fundraising progress on my social media and fundraising page throughout the month. I actually even made it on the local Toronto evening news! All of that got the attention of the founder of the Invisible Disabilities Association, and he invited me on their podcast. Just over three weeks Into May, I hit my step goal, and by the end of month I’d raised over $2,000!
I’m now the newest (and only Canadian) Ambassador for the Invisible Disabilities Association, and I’ve been selected to receive their “But You LOOK Good” Inspiration Award at their 16th annual Awards Celebration during Invisible Disabilities Week in October 2023, which I’m running another fundraiser for. That feels unbelievable, because their past winners include 5-time Emmy award winner and Grammy nominee Wayne Brady, and star of Real Housewives of Beverly Hills and mother of Gigi Hadid and Bella Hadid, Yolanda Hadid. Less than a year ago, my muscle disability was my biggest secret, and now I’m winning an award partly for sharing about it.
Now that the theme of “Joy” has been announced for the Grand Slam, I’m writing my next speech and preparing for the live onstage competition in Toronto on November 18th, against some of the best speakers of the year. Leading up to and after that, I’m excited to keep raising awareness for invisible disabilities in my Ambassador role, and finding new ways to share my story.
How about pivoting – can you share the story of a time you’ve had to pivot?
It was May 2013, and I was excitedly reading the job offer email I’d just gotten. I’d graduated a year prior from my Media Studies and Public Relations program, and had been looking for an entry-level job in my field. I was open to PR, marketing, social media, copywriting, pretty much anything except event coordination. I’d applied to be a PR Coordinator at a nonprofit arts organization that ran a Bollywood festival, figuring that doing PR for an event would be better than running the actual event, and now they sent me a job offer!
My stomach dropped as I realized the offer wasn’t to be a PR Coordinator – it was to be an Event Coordinator. The one thing I’d known for over two years I definitely didn’t want to do – partly because with my disability (which I hadn’t mentioned in the interview process), I wasn’t sure I could physically do it. But I hadn’t gotten any other job offers, and it was only a four-month contract. I decided I could try it out for four months.
Before the four months was up, I loved it. The small team was amazing, I got to contribute to something thousands of people cheered for at once, and though I was nervous about coordinating the many details for an outdoor festival, I was good at it. I also got to mostly work from home, which was a huge plus to be able to save my energy from a commute. The 16-hour day on site at the festival was very physically draining, but I told my Exec Director about my disability a month into my contract, and he was pretty understanding about trying to help me avoid overly physical work when someone else was available for it. I knew the festival days would be hard, but getting to work mostly from home the rest of the time felt worth it.
My contract kept getting extended and I ended up growing and changing my roles at the org over the last ten years – event coordination, social media, project management, hiring and HR; I’d fill whatever we needed at the time. 10.5 years later, I still work for that org, and for over a year now I’ve been the PR & Media Lead. I’ve gotten press coverage in media like CityNews Toronto, CTV News, CP24 and CBC Radio, all of which are major mainstream TV or radio outlets in the Greater Toronto Area. I joke now with our Exec Director that I played the longest game ever.
Now, I feel like I’m a much better fit for the PR Lead role than I was 10 years ago, and I can see how the Event Coordinator role that I never wanted, and taking on so many other departments, helped me realize I’m capable of more than I ever thought. Growing up with limited strength and tiring easily, I’d wondered if even an office job where you’re at a desk all day would be too much for me – because of the early mornings, commute, managing all your domestic chores after 5 pm etc. But now I tell all our summer students how proud they should feel after helping run the largest South Asian festival in Canada, because if you can do that, you can do anything.
Learning and unlearning are both critical parts of growth – can you share a story of a time when you had to unlearn a lesson?
My Exec Director often says, both about my disability and in general, “your weakness is your strength.”
It took me a while to process that, because in my mind for years, my literal muscle weakness of my disability was absolutely my weakness. It was my biggest secret; something I felt always held me back from participating in things as much as I thought I’d be able to otherwise. It kept me from feeling “normal,” and I’d get so nervous any time I had to finally share it with anyone. It felt like I’d be uncovering to them that I’m different, but in a way that was hard to explain, that even I couldn’t explain for my first 12 years {because I had no diagnosis}, and could only partly explain from 12-20, because I had a diagnosis that I learned later was wrong.
Last summer, I was watching Ms Marvel with my boyfriend and heard the phrase “there is no normal, there’s just us and what we do with what we’ve been given.” And it kind of gave me a new perspective on my disability and what my Exec Director says about your weakness being your strength. My muscles may be weaker, but living with my disability made my determination and resilience stronger. It made me a great planner, both for my job and in my social life, because I always want to know where my energy is going and when, so I can plan out my days and weeks to accomplish everything. And it made me detail-oriented, because I’m always thinking about navigational, environmental or timing logistics, to do things the most energy-efficient way I can. All of those are qualities I’m happy to have, and might not have developed without having to contend with my disability.
Contact Info:
- Website: www.laurenpires.ca
- Instagram: https://www.instagram.com/laurensaysyay/
- Linkedin: https://www.linkedin.com/in/laurenpires5/
- Youtube: https://www.youtube.com/@laurensaysyay/videos
- Other: Invisible Disabilities Association Ambassador page: https://invisibledisabilities.org/about/ida-ambassadors/lauren-pires-ida-ambassador-bio/ Second-place winning speech from
- Speaker Slam’s Body Beautiful virtual competition: https://www.youtube.com/watch?v=fVQv4GOlqO4 Lauren Pires “But You LOOK Good”
- Inspiration Award Virtual Table – fundraising page for Invisible Disabilities Association: https://ida.rallyup.com/2023-ida-awards/t/lauren-pires-table/Team/Details
Image Credits
Philip Zave