Embracing authenticity at this year’s Cure SMA conference

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by Kevin Schaefer |

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My 6-year-old niece, Lily, made an astute observation while we were waiting in line at Disney World to get a picture with Daisy Duck. “Is that a person in a costume?”

In a place designed to capture the imaginations of children, leave it to Lily to break the spell with biting realism. Though an employee tried to assure her that Daisy was real, I sat and pondered about her asking Santa questions come December. What can I say? The kid is imaginative, and she can also see right through people’s facades.

Regardless, she smiled for the picture and refrained from any more questions the rest of the night in Disney World’s EPCOT section. It was the final night of the 2023 Cure SMA conference, and her inquisitiveness reiterated a central theme of the weekend: authenticity.

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At every SMA conference, attendees talk about how it’s the one time a year we can be ourselves without any apologies or misunderstandings. People with SMA nod to each other when we’re too fatigued and need a moment to rest. Parents rush to help each other when one of their children encounters a medical emergency. In the real world, we often have to hide our realities and wear masks to fit in. During conferences, wheelchairs, service dogs, ventilators, feeding tubes, and robotic arms are the norm.

For the second year in a row, I moderated a panel called “How to Build Your Presence and Advocate Through Writing and Social Media.” I engaged in a conversation with writers, storytellers, advocates, and entrepreneurs, all adults with SMA. Panelists included Shane Burcaw, Kevan Chandler, Jose Flores, LaMondre Pough, Allie Williams, and fellow SMA News Today columnist Brianna Albers.

In what appears to be a hotel conference room, seven people, all in wheelchairs, are up front, with a large white screen behind them. We see glimpses of audience members at the bottom of the photo.

From left to right at the Cure SMA conference: Kevin Schaefer, Allie Williams, Brianna Albers, Jose Flores, Shane Burcaw, LaMondre Pough, and Kevan Chandler. (Courtesy of Kevin Schaefer)

Topics ranged from starting creative endeavors to building a social media presence, but the theme of authenticity remained at the center. At one point, an audience member asked about trying to get attention on social media platforms when the algorithms only amplify sensational, trendy content. All of us on the panel emphasized the importance of being true to ourselves and sharing our stories raw and unfiltered. True, there’s a performance aspect to social media, but it can also serve as a tool to connect with others when you put yourself out there.

For me, being my authentic self this year meant recognizing my physical limitations. Though I’ve been to Disney parks numerous times throughout my life, this year I scaled back. In addition to wanting to avoid the Florida summer heat as much as possible, I also knew that my current strength levels couldn’t withstand long distances. Even that one night in EPCOT was difficult, and I had to call it quits shortly after dinner. No rides for me this time around.

Though frustrating, my limits didn’t prevent me from experiencing what my peers and I call “disabled joy.” Instead of going to Magic Kingdom or Hollywood Studios, I spent my time conversing with conference friends, both old and new. I formed instant connections, exchanged stories and jokes, and treasured every moment. And driving across the walkway from my hotel to the conference site was more than enough exercise for me.

Embracing my authenticity is a crucial component of living with SMA. Often the world makes me feel like I have to wear a colorful costume to survive. I’ve found that being my real self is what matters, and I don’t have to do that just once a year.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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