CONNECTICUT — Two Berlin parents, both of whom have a son with a rare disability, are trying to raise awareness about diversity and inclusion after an embarrassing incident at a Raffi concert.
Stephen Byrne, 33, has Angelman syndrome, a chromosomal disorder marked by seizures, developmental delays and an excitable personality, according to the Angelman Syndrome Foundation.
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His parents, Roberta and David Byrne, said nothing was going to stop their son from having a good time. They said he was “very excited” to go to Raffi’s concert on May 18 at the Bushnell Theatre in Hartford for his birthday.
“My wife bought front-row tickets well in advance, in fact in November, so she could get a close-up view of our son, who is visually impaired,” David says.
The family arrived about 45 minutes before the concert, during which Stephen thought he saw Raffi backstage, David said.
“Stefan didn’t scream or anything. He thought Raffi was coming out so he was very calm and just said ‘hello’ to who he thought was Raffi.”
Nevertheless, five minutes before showtime, the Burns say members of the Bushnell Theatre’s security team visited their seats.
“She kept saying that if we stayed in our seats the artists wouldn’t be able to perform,” David said.
Unlike some patients with neurological disorders who scream uncontrollably in response to sensory stimuli, those with Angelman syndrome have no problem remaining calm and collected during live performances, and Stephen has quietly enjoyed “hundreds of shows,” his father said.
David said he explained the situation to Bushnell security, but the security officer still insisted the family move to the back of the theater.
But Stephen wouldn’t accept it, according to his father. After Bushnell employees explained to his son what they wanted, Stephen stood up, moved to an adjacent aisle seat, and sat down again. Rather than have security physically move his son, David offered to provide the family with a wheelchair, which they used to whisk Stephen off the premises.
“It was very traumatic for our son and very devastating and tragic for us,” Roberta said, adding that it took the family nearly a month “to process what had happened.” In the meantime, David said the family went to see “Shrek the Musical” at Toyota Oakdale Theatre in Wallingford, which Stephen enjoyed very much, and quietly.
Roberta eventually shared what happened on Facebook, and social media did just that: Amid an outpouring of sympathy, friends referred the family to disability rights groups and to Rick Lopez, the state senator for the 6th District who represents Berlin, New Britain and Farmingdale.
The Bushnell Theatre is a 501(c)(3) nonprofit organization and the largest arts organization in the state of Connecticut, with a clear commitment to inclusion. A spokesperson for the theatre said in an email to Patch: “We are heartbroken by Stephen’s recent experience and have been in close contact with the Byrne family. We are working to set up a meeting between Stephen and Attorney General Tong in the near future.”
Roberta Byrne disputes the theater’s PR claim, saying the only time she or her husband spoke to Bushnell officials was two weeks after the show to request a ticket refund, and that she arranged the meeting with Tong’s office herself.
They’ve got the ears of a state senator and attorney general, they’ve got social media outcry, the Byrne family has rallied the troops, but what does victory mean?
“We believe in inclusion and we believe diversity is our strength,” David said. “Someone is different, so we choose to call it a ‘disability,’ but that doesn’t mean they’re different from you and me and don’t have the same hopes and dreams. We don’t want to see anyone else be excluded or have to go through this.”
“And we were pretty sure that if it had happened once, it could have happened before it happened again. So we don’t want that to happen.”