Fixing accessibility issues at a choir concert so the show can go on
Our approach to problems with DMD has always been, 'How can we fix this?'
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It seems to be a theme in our lives: Lifts and elevators work great — until they don’t.
I am a mom to many: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 12; and Callie, 4. Three of my sons, Max, Rowen, and Charlie, have Duchenne muscular dystrophy (DMD), and all three have been heavily involved in the fine arts programs at their high school, including choir, theater, and band. As wheelchair users, they have frequently used the auditorium lifts, one to the stage and one to enter the auditorium.
Recently, Rowen experienced a stressful event in front of an entire auditorium during a choir concert. As the director took the microphone to welcome everyone, I noticed someone trying to help Rowen in the lift, which had stopped a few inches off the ground.
My husband went to the front of the auditorium to see what was going on. They tried to override the lift and open the door manually, but it didn’t work. Rowen was stuck. This was the first vocal music concert of Rowen’s senior year in high school. I said a silent prayer, “Please don’t let them start without Rowen. Please don’t let Rowen miss this.”
Fixing the problem
Minutes passed. I joined my husband, a principal, and the maintenance worker by the lift. We had to get him off. The director and pianist noticed what was going on, and the director met us at the lift after he finished his remarks. He wouldn’t start until Rowen was safely off the lift and on stage. In fact, he had already asked several choir members to go get a portable stage ramp.
Together, we found the right tools to open the door, and because he was only a few inches off the ground, the lift ramp was enough to get him off safely. As soon as he got off the lift, Rowen got himself up the ramp and joined the choir on stage. The choir sang their songs with him, and tears streamed down my cheeks for all of them.
Rowen told us afterward how much he disliked it that the entire auditorium was watching him. At certain points, he had ducked his head low and hid behind the lift. He said he wanted the choir to perform without him.
The choir director texted us later that night to check on Rowen and to tell us how impressed he was with Rowen’s handling of the situation. I was proud of Rowen, too, for enduring the embarrassment, and thankful he didn’t miss the performance.
But I was also angry that my sons have to deal with so many accessibility challenges in order to be involved in the same activities their peers participate in so easily. Those emotions made my eyes leak. It took me several days to process it all before I could share this.
Anger creeps in
But the fact is that I have three sons living in a world that isn’t made for them to access, and these types of challenges are nonstop. At the end of the day, our family philosophy tends to be not to give in to the anger that creeps in when things go wrong. We could be angry, but that wouldn’t make the world more accessible. It would change us; it would eat at us, steal our joy, and diminish the quality of life we strive for.
Instead, our approach has always been, “How can we fix this?” It tends to be small, case by case, but we find a way. The best part is that as we figure it out, we help to make lasting changes that benefit other wheelchair users.
I will never say it is good that my sons face so many obstacles with accessibility, but I am grateful that, together as a family and with our community, we face the challenges positively, without letting anger or disappointment change who we are or how we approach life.
Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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