In Saskatoon this weekend, a Muscular Dystrophy Youth Conference was held, and I was lucky enough to attend!  This blog post is one that has been weighing on my mind, because I can not seem to find the words to express just how the Muscular Dystrophy community of Saskatchewan brought a certain rebirth to my passion for my platform.  I am humbled, inspired, and excited to be a part of this very important cause.

Mr. Max

At registration, I met one of my new favourite people, his name is Max.  Shailynn immediately introduced me to Max and his mom, as they were old friends from attending the SMA Family Camp. The four of us settled into the conference room and found ourselves in the prime position to soak up a ripe dose of the power a conference like this can create.  The various speakers throughout the day splashed us in the face with the cold, refreshing water we had been waiting for.

The first personally impacting speaker for me was Heather Kuttai.  Heather was restricted to a wheelchair after a car accident she was in when she was six.  As the founder and director of the Disability Services at the University of Saskatchewan, a Paralympic athlete, a disability advocate, blogger, speaker, and mother of two- she has a variety of valuable ideas & insight to offer the disabled community.

Heather brought up the certain idea that the Handicapped were “left behind” throughout the civil rights movement of the 60s that shone a light on open sexuality, fought racism, and changed many aspects of our society. Heather spoke to her audience about the importance of self-advocating, and the five important tools needed to do so.  Self worth, asking for help, educating yourself, choosing battles wisely, to be strong, and to be positive.  Her message was powerful, one I will not forget.  That specific thought on the civil rights movement, and the Handicapped being in a sense left behind stuck with me more than anything else.  As Heather shared experiences of being discriminated against because of her disability, I couldn’t help but relate these to the incidents I have witnessed my friend Shailynn be a victim to by her peers in our society.

As important as it is for the disabled to be self advocates, it is essential that the able-bodied be open advocates for the disabled as well.   There have been disabled people such as Heather advocating for themselves for years and years, and still today there is too often incidents of injustice that are left ignored.  This is a movement that requires a much larger, broader voice to be heard.

The good news is, it seems as though we are beginning to be being heard.  The provincial government is in the process of creating a Disability Strategy that will aim towards creating Saskatchewan to be the best province in Canada to live as a disabled person by the year 2020.  This was the most exciting news of the day!  News that brought Max’s mom to a fist pump, and news that reassured me I was in the exact right place at the right time, capable of soaking up all kinds of inspiration.

Through many of Heather’s, as well as Shailynn’s experiences with self advocating, common feedback they have received is that there is no point in making accommodations for their needs because they won’t be needing those accommodations for long anyway, and there won’t be another disabled body in that building again, right? Wrong, wrong, wrong!  Our society needs to accept that a painted parking space and automatic door is not going to cover up the true issues that an independent disabled person faces in our society on a day to day basis.  I believe that the new provincial Disability Strategy, the many events taking place to bring awareness to various Muscular Dystrophy and disabled needs, and even by promoting my platform and bringing awareness to Spinal Muscular Atrophy, the big movement we have been waiting for here in Saskatchewan is up and running like never before.

Luca "LazyLegz" Patuelli & "lil lazylegz" Logan

The final highlight of the day was our last speaker, Luca Patuelli who is a worldwide known dancer.  Luca was born with Arthrogryposis, a rare muscle disorder that limits motion in the joints. Luca was affected in his legs, just like little Logan who was snug by Luca’s side throughout the night.  Despite Luca’s disability, he has been an extremely successful dancer; performing in the opening ceremony of the 2010 Paralympic games and breaking the record for the worlds largest flash mob-having over 60,000 people dancing the same moves at the same time-is one of his greatest achievements.  Each day Luca shares his incredibly inspirational message of “No Excuses, No Limits” with youth around the world, and it was an honour to have him right there at the conference with us.


The night ended with a rockin’ dance party!  Luca’s special friend Mike “Bboy Piecez” Prosserman who is another incredible dancer and entrepreneur was also there for the party and it was great to see everyone relax, connect, and enjoy simply moving to the music.   I was honoured to be in such amazing company, and to be welcomed as a special guest to the conference.  I am ready to move forward in my work bringing awareness to Spinal Muscular Atrophy with no excuses, and no limits.  Forever grateful for this years Muscular Dystrophy Youth Conference, and ecstatic for future events, I will leave you today with the hope that you were able to draw some understanding and perspective through my experiences this weekend.

Never be afraid to stand up for what you believe in.  Do not worry about what others may think of you, and go dance!

Justine 🙂


Written by: Justine Farago Tagged with:, , , , , , , , ,
Posted On: Categories:Little Bit of Everything

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