A Moment of Inclusion in Kuala Lumpur

This past Friday, I came back from a two-week trip to Malaysia and Istanbul with my best friend. The Malaysia part was for a personal development program we did together with another friend, where I explored a lot of my feelings and perspectives on living with an invisible physical disability (thank you forever SEEDS Mastery!) ✨

I have so many stories and photos to post eventually, but this one stood out.

Once my friend and I were finished shopping at Central Market in Kuala Lumpur, I ordered a Grab ride (their version of Uber) to pick us up, make a stop to pick up our third friend, and take us to our dinner plans. When I got the ride confirmation, I noticed it said our driver was deaf, and to communicate with him through the chat function.

For most of our interactions during the ride, we did use either the chat or gave each other a thumbs up. It didn’t feel like enough appreciation or inclusion to me, but I don’t know any sign language.

So mid-ride, I quickly Googled how to say “thank you” in sign language, figuring doing that at the end of the ride would be better than nothing.

Just before I got out of the car, I signed “thank you” to the driver, and he signed it back! And even though he was wearing a mask, I could tell from his eyes he was smiling. 🥹

I’ve always felt a kind of empathy and solidarity with other people living with disabilities. Even when they’re different from my own, we’re all living in a world that wasn’t built for us. We all appreciate moments of recognition or inclusion, whether they’re big or small.

And sometimes, a moment of inclusion is just a quick Google search away. ✨🫶🏽

Day 5 of Invisible Disabilities Week: my first time meeting someone with my disability in person!

If you’ve ever felt nobody understands what you’re going through, this is your sign we’re never as alone as we think we are.

That was a main reason I rarely talked about my muscle disability for over 30 years - I figured nobody would care or relate. Then, I connected with Carrie.

Carrie and I both have the same rare muscle disorder, have both worked in the arts and for music festivals, and both love sparkle (her @carrieccduk IG bio is “Invisible Disability | Visible Sparkle” and I WISH I’d thought of that myself!) - I’m pretty sure that makes her my doppleganger somehow?! ✨

She reached out to me in January and we realized we have SO much in common. I was in the UK in August for my cousin’s wedding, and we met up during my 2.5-day trip to London - my first time meeting someone with my disability in person! Check out this reel on my Instagram for how our first meeting went.

I’m now so positive that your Carrie is out there too - you just need to share your experiences and what you’re going through, or at least look for people sharing theirs. Let me know when you find them! 💃🏽✨🫶🏽

Thanks to @thedanshaikh for being our personal cameraman and creative director 😂🥰💖

Invisible Disabilities Week speaking engagement for The Co-operators

In less than 10 days, I’ll be speaking virtually to 200-300 employees at The Co-operators about disability biases and beliefs, supporting invisible disabilities and fostering an empathetic, inclusive culture - a dream fit for Invisible Disabilities Week next week!

From my story of hiding my rare muscle disorder as much as I could for 30+ years, to rethinking common invisible disability myths and swapping in more inclusive language/responses, I’m so excited to speak to the ERG members - one of my favourite audiences!

To me, Invisible Disabilities Week (Oct 19-25) is about creating visibility and community for those living with them, and to encourage others to share their stories and experiences.

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

It’s not difficult for everyone - and that’s the point

This past weekend, I was at a digital detox summer camp for adults called Camp Reset. It was my second time - my first was in 2022, days after I spoke publicly about my muscle disability for the first time.

In 2022, I had a difficult time - my cabin was on the opposite side of the campground from basically everything, so it was an 8-10 min walk on uneven ground to do anything/go back at night. I hadn’t requested any accommodations, because I hadn’t thought of that scenario - and wasn’t used to thinking about accommodations. I was used to pushing through, because I never used to talk about my disability.

This time, I requested a cabin closer to the activities and on flat ground, which helped. Also in our cabin was a guy in his late 20s, with a visible disability with one of his legs.

I mentioned my disability to him, and while we didn’t get to chat about our experiences much, I’m always excited to encounter another young person with a mobility disability.

I mentioned my 2022 cabin experience to him, and he said something along the lines of how for some people, their number of steps don’t matter to them, and it’s good that the people whose steps do matter, can be given a closer cabin.

Hearing him say that lit a lightbulb in my mind to something I hadn’t realized before - I’d thought because the 2022 cabin was far/difficult for me to go back and forth from, that meant it was difficult for everyone. I’d thought “well this sucks, but it sucks for everyone in a far cabin, so it might as well be me dealing with it too.”

But it’s not as difficult for everyone. Some people can easily do thousands of more steps in a day than I can, and some people love hiking. Some people didn’t have that experience physically wipe them out like it did for me.

It’s so interesting to uncover ways I’ve normalized difficulty to myself without realizing it. I’m still not great at communicating what can make a situation easier or more equitable for me, as opposed to just pushing through difficulty when I don’t have to, but I’m working on it! 🎉✨

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. 🤍💃🏽✨

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 🫶🏽💃🏽✨