31 Days of SMA: Tyler Dykema

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by Kevin Schaefer |

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Day 27 of 31 Days SMA Topic: Live Music and SMA This is @breachthelevee’s story: Hello SMA News Today readers! That nerd you see in front of the mic in this photo is me. You can call me Ty! I’m 30 years old, I’m from Grand Rapids, MI, I have SMA Type 2, and today I want to talk about something that I miss a lot. I miss live music. It’s where I feel like I thrive the most. Through years of maneuvering the lack of accessibility and other barriers ingrained in the music scene, I was able to carve out my own little space in it by releasing a number of zines, compilation records with my friends, and curating an annual summer festival. It’s by building a platform that way that I found footing in my activism. It hurts to look around a live event space and see the barriers in place that prevent my fellow Disabled people from actively participating or even having their immense talents recognized in the first place. Live music and art spaces need to be overhauled to include us. So I began booking myself as a speaker before and between bands at live shows. There’s a lot of power in a microphone. It’s a power that’s hard to describe but it’s one I love and am called to share with and for my people. When I speak at events, it’s often about accessibility, why representation matters, and other relevant aspects of the Disabled experience. Usually I’m speaking to mostly able-bodied audiences that have never even considered my points of emphasis. But challenging them can be beautiful. I love looking out over a sea of faces and see the lightbulbs click on behind their attentive eyes. It’s moments like those that make me trust that there are good ones out there that want a better world like I do. That and demanding space for the other Disabled folks in the room feels so damn cathartic. So yes, I miss live music. But it’s not so much the music itself I miss, it’s the being present in a moment. The energy. Progressing together. It’s the getting to advocate in a unique way. But we’ll get back there safely in due time. I’m excited for it. #SMAAwarenessMonth #SMAAwareness #31daysofsma2020

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About the Author

Kevin Schaefer avatar
Kevin Schaefer Kevin Schaefer (he/him) is a writer, podcaster, and lover of all things pop culture. Diagnosed with SMA type 2 at the age of 18 months in 1995, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. He works as the associate director of community content for this site’s parent company, BioNews. He also hosts the SMA News Today Podcast. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

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31 Days of SMA, SMA Awareness Month, Tyler Dykema
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