Chris, Lucas and the Daily Yay

In May 2024, I did a Mobility Awareness Month walking fundraiser for the Invisible Disabilities Association, and was posting about it to get donations. 

A few days in, I wake up and see the largest single donation I’d ever received, from a man named Chris.

But - I’d never met Chris and had no idea who he was.

I looked closer at the name and thought wait, I recognize this - he tried to add me on LinkedIn a few weeks ago, but I didn’t do anything with it, because I didn’t know him.

So I go to LinkedIn, accept his invitation and message him something like “hey Chris, thanks for connecting.  I just saw that you made a really generous donation to my fundraiser, thank you so much! What’s your connection with invisible disabilities? Do you have one yourself or know somebody who does?”

Chris wrote back about an hour later with the message screenshot above.  🥹

“Hi Lauren -

First of all…BIG FAN!

Yes, my 8 year old son (Lucas) was diagnosed with CCD a few years ago. Tough age for him right now so I was looking for people with a similar condition and ran across your video on speaker slam. We watched it together and now try to celebrate a “Yay” everyday. Sharing your story has made a big impact on him - so happy to help and thank you for raising awareness for CCD and similar conditions. If theres ever anything I can do to support your efforts please dont hesitate to reach out.

Chris”

I read this message and I’m like bursting and melting at the same time, for the rest of the day. I never used to talk about my disability - partly because I didn’t have a diagnosis or name of it until my early twenties, so I didn’t know how to explain it to people.

Even after, I didn’t think there was a point of talking about it + figured nobody would understand.

I’d never really thought about the mental health aspect of living with a rare physical disability. But when I look back on that part of my life, where I didn’t have anything to Google to find people going through the same thing, or a name to research to find out why my body was the way it was, it was a pretty lonely experience.

I can only imagine what it would have been like to see representation, or see somebody talking about their disability and living their life, and the impact that would have made on me at 8 years old.

Chris and Lucas are what made me realize we never know who we’re impacting, just by being and sharing who we are. And that by owning and sharing our difficult experiences, we can be the representation and light for others to know that they can get through their difficult experiences too.

And thank goodness that during Disability Pride Month and beyond, there are so many of us out there, sharing our stories. 🤍💃🏽✨

What happens when you don’t “look” disabled? CTV Your Morning interview

“Whether you have the same diagnosis or not, so many people go through the same experience that you can then bond over.” 🤍

Such a joy to chat with Teddy Wilson last week on Jul 22 on CTV Your Morning, about the fear of sharing invisible disabilities and the community I found when I started talking about my own.

27% of Canadians identify as having a disability. This Disability Pride Month, may we all see more of the representation we need to realize that we’re not alone in our experiences after all. 🫶🏽✨💃🏽

Thanks to my publicist Dan Shaikh and the amazing CTV Your Morning team for bringing more awareness to this story! You can watch the interview here🙏🏽

Later that evening on the day of my interview, I was at an event and someone mentioned to me that they don’t think they have a story themselves, compared to someone like me who has an “adversity.”

And I told them that until I started talking about my muscle disability (because I saw other Speaker Slam speakers talking about their disabilities), I didn’t think I had a story either. That my mom spent 30+ years telling me I should “share my story,” and I was like “what are you talking about, I don’t have a story, this is just my regular life, nobody is going to care.”

I didn’t realize there were people like me who would care, because they can relate to my journey. I didn’t think about the impact it would have made on me to see myself reflected in someone else’s experience while they talk about it openly.

I never thought I’d one day be part of the representation I didn’t realize I needed, but I’m so, so glad to have that chance. And I hope other people who see my story realize that by sharing whatever they’re living through, that they can be someone’s representation too 🙏🏽💞✨

For a long time, I didn’t even know how to talk about it

For a long time, I didn’t even know how to talk about my disability - I was in my mid-twenties when my muscle specialist finally quantified it to me, and I learned I have about 33% strength of the average person. Not 33% LESS strength, just straight up, 33% strength. A wildly failing grade, finally assigned to what felt like my ability to do literally anything. 

Driving home from my appointment, not only was I surprised, I was mad. I had lived 26 years with no understanding of my own body, but now I finally had an explanation that other people could understand, and it almost felt worse. What kind of life can I have on 33% strength?

I’ve only been ✨open✨ about my muscle disability for 2.5ish years, which is recent enough that it still feels wild to think back on my life when I was undiagnosed (20+ years), or had no easy way to conceptualize/explain it (26 years) or avoided telling people as much as I could (30+ years).

Until recently, I never really thought about the mental health side of living with a rare physical disability. But when I remember having no name of a condition I could research to find out why my body was the way it was, and no terms to Google to find other people living with the same disorder, and not knowing I was part of the rare disease community or that one even existed, I do remember that it was kind of a lonely experience.

I think that’s part of why I like talking about it so much now - especially during Disability Pride Month - because when we talk about disability, we find the people who can relate, and realize that even if our diagnoses or journeys have been different, that we’re not alone in them after all. 💫

That time I accidentally achieved a bucket list dream

When I was young, I wanted to be either an actor or a late night show comedy writer (among a few other things, but those two were constants).

I loved watching talk show monologues and SNL, and I had a bucket list dream of one day getting laughs in a comedy club (I definitely considered myself too shy for stand-up back then, but I did admire them!).

Over the 15-20 years since then, I mostly forgot about that dream. I didn’t even think about it when I got asked to be part of a love-themed storytelling show, Once Upon a Woman, that was happening in a comedy club last year.

The day of the show I was SO stressed. I knew my 8-minute story by heart - the story of matching with my now-boyfriend online during the pandemic, telling him about my muscle disability for the first time on our second date, and becoming an invisible disability speaker on resilience and belonging - but was super self-conscious about still having a cough from a cold that was ending.

I’d never performed under these conditions before, and I wasn’t even sure I COULD get through 5 minutes of talking without a coughing fit, let alone 8.

Eventually my time slot came, and miraculously I made it through without a single cough. Getting off stage I felt a huge wave of relief, followed by a spike of excitement at another realization - I had just gotten SO MANY LAUGHS at a comedy club! The bucket list goal I hadn’t thought about for 15+ years actually happened!

Little Lauren would have been shocked, and maybe initially horrified, but probably eventually proud. Because little Lauren never talked about her disability. She thought if she shared it too early, it could scare people off. She never would have imagined achieving one of her bucket list goals by sharing a dating story where she had to own who she is.

If there’s anything I’ve learned from my journey of being open about my muscle disability, it’s that it’s a lot easier to work WITH who you are, as opposed to trying to work against who you are. And I really hope that as more people see my story, they can embrace this lesson too 🫶🏽✨

PS - I didn’t get a good video at that show, but I told the same story at a Replay Storytelling show and got so many laughs there too - you can watch the video on YouTube here!

Catch me on CTV Your Morning on Tues Jul 22!

Have you ever said “you don’t look disabled” or “I don’t even think of you as having a disability”? Phrases like that can be well-intentioned, but they aren’t actually the compliments some people think they are.

Excited to be on CTV Your Morning on Tues Jul 22 to talk about Disability Pride Month from the perspective of someone living with an invisible disability!

Disability Pride Month is a time to normalize discussions around disability and listen to how people feel about and live with their own, so I love seeing more recognition of it in July. 💃🏽💞✨

Two of the best days of my life aren’t what I ever expected them to be

Last week I told someone that two of the best days of my life were the day I became the #2 Inspirational Speaker of the Year at the Speaker Slam Grand Slam, and the day I gave that same speech at @giovannimarsicoofficial's DestinyFest (formerly Archangel Summit) to an audience of 1,000+.

Both days I wore an absurdly sparkly top, received a standing ovation (!), and was celebrated by incredibly kind audience members. All of those make for a good day by themselves.

But the part that I still can’t believe is that two of the best days of my life involved telling HUNDREDS of people about the disability I was born with, and hid as much as I could for 30+ years.

I’ve been ✨open✨ about my muscle disability for 2.5ish years now, but I still remember what a scary, nerve-wracking transition it was.

There used to be a time I figured I’d never talk about it - and I was fine with that. I didn’t see the point of talking about it, I didn’t feel like I was missing out on anything - that was just life.

I thought if people knew about my muscle disability, they’d think I was using it as an excuse or see me as less capable.

But I can see now that I wasn’t nervous about existing with a disability and people knowing about it - I was nervous about their assumptions and ableism. I was nervous they’d ONLY see me as a person with a disability, as opposed to a person with a
✨personality✨

Now, through my speaking, I love that I get to share my perspectives on life with a disability, and encourage others to embrace what they’re hiding about themselves to share their own unique perspectives too.

Because every time someone steps up and says who they are, the world becomes a better, more interesting place. 💫

Disability Pride Month is a time to normalize discussions around disability and listen to how people feel about and live with their own, so I’m excited to see more recognition of it in July! 💃🏽💞✨

Did you know July is Disability Pride Month?

DID YOU KNOW that July is Disability Pride Month? I only learned that about two years ago, when I started speaking about the rare muscle disorder I was born with and avoided talking about for 30+ years.

Now as an invisible disability speaker on resilience and belonging, I’m especially excited to give keynotes and mini-workshops for audiences from high school to corporate, during a time meant to normalize and invite discussions around disability inclusion.

My keynote “Biases, Beliefs and Belonging: Rewriting Narratives on Disability and Acceptance” is perfect for disability-related ERGs and speaks to:
- The importance of seeing representation of people going through the same challenges as you
- Statistics around disability prevalence and disclosure rates in Canada
- Common biases and beliefs around disability, with my own experiences and stories sprinkled in

My signature keynote “Seeking Strength: How to Build Resilience Through Small Moments of Joy” is best for corporations and associations, and illustrates:
- My lived experience as someone born with a physical disability, undiagnosed for 20+ years and masquerading as a non-disabled person for 30+ years
- A call to action and to empathy for those hiding struggles they’re afraid to share - including yourself
- A 3-step system by which you can embrace all parts of yourself, to form deeper connections with others

My mini workshop “Everyday Ableism and How to Recognize It” is great for youth aged 13-18 and explores:
- Different forms of ableism (from non-disabled people, from within the disability community, and internalized) with real examples from my lived experience
- How bias and language choice can reinforce harmful beliefs about disability
- Practical ways to unlearn ableism and become better allies, especially for people with invisible disabilities

If your organization, association, ERG or youth program is looking to mark Disability Pride Month in July, let’s connect to discuss how I can help! ✨

Building Inclusion Through Empathy - Canadian SME Small Business Magazine

A 2017 “Disabilities & Inclusion” study by Coqual showed that of the 30% of the professional workforce with a disability, only 39% had disclosed to their manager, 34% to their teams, and 31% to HR. 

That same study also found that employees who disclosed their disabilities to most people they interacted with, were over TWICE as likely to feel regularly happy or content at work, compared to those who disclosed to no one.

After hiding my muscle disability at my nonprofit arts/events job from everyone but my director and one other colleague for 10+ years, I can definitely speak to how freeing it felt to be my whole self, once I started speaking about my lived experience with an invisible physical disability!

So happy to share my thoughts with CanadianSME Small Business Magazine on Building Inclusion Through Empathy, to create workplaces where people feel safe to disclose the barriers they’re facing.

You can read the full article linked here 🫶🏽💃🏽✨

The Yay Team hit our IDA Walk and Roll step and funding goals!

Saturday was the last day of Mobility Awareness Month and the numbers for the Invisible Disabilities Association Walk and Roll are in - SO happy to say that The Yay Team (aka my mom and I ☺️) both overshot our step goals AND our funding goal! 💃🏽

- I exceeded my step goal of 85,000 steps, rounding out at 85,520 steps in May🎉
- My mom exceeded her step goal of 100 km and walked 105 km 🥳
- I came in #3 in Participant Rank and my mom came in #2 (aka we raised the second- and third-most money!) 💰
- The Yay Team raised $1,021 USD, 102% of our $1,000 goal, and placed #2 for Team Rank and Unique Donors Rank 🙌🏽

Thank you to my mom for always being the best support, and to my boyfriend Dan for getting me out on a walk on Friday to make sure I got my steps in. And of course, thank you SO MUCH to everyone who donated! It was such a thrill to see every time, and to feel the support and motivation during what was generally a wildly busy month, made such a difference in keeping me going. I truly appreciate it and I’m so glad I was able to live up to what I’d committed to doing.

My third year of the fundraiser down, and I’m excited to say that across those three years, myself and The Yay Team have officially raised over $5,000 USD for the Invisible Disabilities Association! Now that’s definitely a daily yay 🥰💃🏽✨

New presentation for schools and youth: Everyday Ableism and How to Recognize It

When I was first asked to be a guest speaker at a workshop for high school students on ableism, the final workshop in a 4-part series on discrimination, the organizer said she wanted the students to be aware of ableist experiences in everyday life.

I had the idea to share some of the personal experiences of ableist comments I’ve gotten before and how I’ve felt internalized ableism, but thought “would I really have enough examples to make that work?”

Turns out the answer was yes 🙃 from “do you think your ex broke up with you because he thought you wouldn’t be able to keep a house clean?” from a family member, to “So laziness is a disability?” from a random internet man on YouTube, to somehow both wondering if I have “enough” of a disability AND feeling like someone without my disability might be better at my job last summer - let’s just say when I thought about it, the content was definitely there. 🥲

Yesterday I spoke to students at Monsignor John Pereyma Catholic Secondary School in Oshawa with my newest presentation, Everyday Ableism and How to Recognize It, for Red Shirt Day of Action for Accessibility and Inclusion. I got some beautiful comments in the student feedback, and I’m excited to bring this presentation to more schools or youth organizations!💃🏽✨

Rethinking Disabilities Toronto at Arta Gallery

This past Thursday, I was one of the speakers at Rethinking Disabilities Toronto, an event for HR leaders, talent acquisition specialists and DEI practitioners, where I led a session on What We Don’t See: Supporting Invisible Disabilities at Work. As someone who hid my muscle disability as much as I could for 30+ years, it was exciting to be in a space full of disability advocates, sharing my perspective and chatting with people advancing disability inclusion.

From connecting with an attendee who was also diagnosed later in life, to hearing another attendee’s story of how she was only able to explore getting a diagnosis after hearing someone else’s similar story - as one kind attendee said about my session, it was such a life-affirming night. Thanks to Scale HR for having me, I’ll definitely be keeping an eye out for future events! 🎉✨

I’m walking 57 km in May for Mobility Awareness Month!

I came back from my family trip to Paris at the end of April, and while I was there, I walked a lot. Which was great prep for my third year participating in the Invisible Disabilities Association’s Walk and Roll for Mobility Awareness Month in May!

I was born with Central Core Disease, a rare neuromuscular disorder and invisible disability. As the only Canadian ambassador for the IDA and to raise awareness for invisible disabilities, I’ve decided to walk 85,000 steps in May (about 57 km) - which is a lot when your life is about balancing your energy, because you have 33% of the physical strength of the average person.

Deciding to walk that many steps in a month is a bit daunting for someone with 33% strength.

Luckily, I also have 100% spirit. ✨

I’d love to have you join or support! You can donate to my participant page (in USD) here - as of this afternoon, I’ve walked almost 12 km, and raised $300 USD!