Guest columnist Valle Dwight: True inclusion is still a dream for people with disabilities

The writer’s son, Aidan, sings in a past performance.

The writer’s son, Aidan, sings in a past performance. CONTRIBUTED

By VALLE DWIGHT

Published: 06-08-2024 7:01 AM

 

I first wrote about our son Aidan on these pages when he was 18 months old, some 26 years ago. He was diagnosed with Down syndrome, and I wrote then about the fears and joys and unknowns we were facing. I remember being so anxious about what he would face in his middle and high school years — would he be bullied, would he be included, would he have true friends?

We needn’t have worried. Aidan burst into the world with a huge spirit and an even bigger smile, and he refused to be sidelined by anyone. He made good friends, joined student government, acted in plays, went to the prom.

And since graduating,he has been embraced by his community. He is a frequent visitor to both libraries, volunteers a few hours a week at a retirement community, works out at the gym, and is a regular at Cooper’s Corner and the Big Y (which are both kind of like his Cheers).

But anyone who knows Aidan knows that his one true love is performing. He loves to dance and act, and most of all he loves to sing. There’s no one within a two-mile radius of Florence center who hasn’t heard Aidan singing as he makes his way through town. His voice won’t earn him a spot on American Idol, but there is no denying the pure joy of it. People stop us all the time to say some version of, “Aidan’s singing makes my day.”

He sang in his middle school and high school choruses and has been a regular in the Joyful Chorus, an inclusive chorus at Whole Children. He has performed on stage with musicians including Dan Zanes, Sarah Lee Guthrie and The Young@Heart Chorus. He has been in countless musical theater performances.

So, this spring, when we saw huge color ads in the newspaper advertising a “no-audition” community chorus that was devoting its summer session to the songs of Queen, Aidan was over the moon. This is a guy who knows every word of every Queen song — they could well be the anthem soundtracks of his life: “We Are the champions,” “Don’t Stop Me Now,” “We Will Rock You.”

After the first rehearsal, the director called to say that he was concerned because Aidan’s voice didn’t “blend” with the group and that he had been shouting out during rehearsal. I recognized this behavior as something Aidan does when he is anxious and in a new situation. I explained that to the director and said we would coach Aidan through it.

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Before the second rehearsal, Aidan checked in with the director, told him he understood the issues and said he would work hard to blend his voice. He came bouncing out of that second rehearsal, saying he’d had a great time. Apparently, it wasn’t enough.

The director called the next day to say that Aidan was out. He couldn’t “match pitch” so he couldn’t be part of the chorus — this “no-audition” community chorus that was open to everyone.

I asked if we could hire someone to sit with him to cue him to modulate his voice. Still no, said the director. His decision was final.

I admit that I was shocked, and I told the director he’d have to deliver the news to Aidan himself because I had no idea how to do it without crushing him. After his call with the director, Aidan reported, “I don’t belong.”

And here, 28 years later, is that wall we’ve been expecting to hit all along, and it’s as brutal and incomprehensible as I thought.

Aidan has faced rejection before, of course. He has auditioned for local commercials, for roles in his high school play, for solos in chorus. There are many parts he has not gotten, and that’s OK.

But the ad in the paper for this chorus said, “No audition.” “Anyone can sing with us!” it proclaimed. Apparently, it really meant, “Anyone can sing with us (except you).”

Aidan faces more challenges in a month than most of us deal with in a lifetime. Every single day he climbs Mount Everest. Often there are people cheering him on. Sometimes there are people reaching out a hand. And sadly, there are still people who try to push him back down.

We thought perhaps that in our community, which claims to value diversity and inclusion, there would be mostly helping hands and cheerleaders. But in recent years we have seen a neighborhood oppose the construction of accessible sidewalks, we heard students in special education referred to as “second class learners,” and now we see a community chorus turn away a music-loving young man because of his disability.

It is a painful reminder that despite the progress we’ve made, there are still significant barriers to true inclusion. And those barriers lie in the people who are not willing to see possibility when faced with disability.

Valle Dwight lives in Florence.