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Rochester 10: Oscar Merulla-Bonn

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At his parents' Brighton home, 11-year-old Oscar Merulla-Bonn eaglery displayed a sampling of his art — bookmark-sized colored sketches of demons, muscular and vibrant creatures with tentacle-like arms and clenched claws.

"I'm really into the dark fantasy, dystopia kind of stuff," Merulla-Bonn said.

One day, Merulla-Bonn hopes to make a living as an artist. Despite his youth, he overflows with that trait possessed by any true artist — insight. Merulla-Bonn, a disability rights activist, has set out on a mission to use his voice to advocate for others and challenge perceptions.

PHOTO BY JOSH SAUNDERS
  • Photo by Josh Saunders

"Don't judge people by what they look like," Merulla-Bonn said. "It's hard to explain, because sometimes you'll see someone who's like, 'Oh my God, that person's in a wheelchair, oh they're weird.' But they might not be. They're probably just a normal person. I guess it's trying to figure that out, and treat everyone like you would everybody."

Merulla-Bonn uses a power wheelchair. At 14 months old, he was diagnosed with spinal muscular atrophy type 2, a neuromuscular disease that causes severe weakness throughout the body. Merulla-Bonn is candid about his experiences, and said many people he encounters have  good, albeit misguided, intentions.

"I think a lot of people are like, 'I need to be nice to this person, because they're at such a disadvantage in their lives, it's so hard for them,'" Merulla-Bonn said. "But it's not, and there are things you have to face as a person in a wheelchair. But if I'm an able-bodied person and I see a disabled person over there, am I going to go up and say, 'Hey, what's going on? Can I talk to you?' But if that person was able-bodied, would I do the same thing?"

A sixth grader at Twelve Corners Middle School, Merulla-Bonn's condition has forced him to advocate for himself. To that end, he has given presentations to the faculty at his school on disability rights and requested accommodations, like moving around desks to allow him to participate in a class scavenger hunt. He said most faculty are understanding and eager to listen.

PHOTO BY JOSH SAUNDERS
  • Photo by Josh Saunders

In the process, he has made a name for himself in disability rights circles, and requests for him to speak keep coming. In October, Merulla-Bonn and his family were featured on Connections with Evan Dawson on WXXI News, a media partner of CITY. In January, Merulla-Bonn is set to give a presentation on disability rights to the Society of Protection and Care of Children before 90 people expected to be in attendance.

"And they're going to give me fifty bucks!" Merulla-Bonn said.

Merulla-Bonn understands people make mistakes, and a key part of his message is owning mistakes.

"If somebody says something to someone else and it hurts their feelings, that person whose feelings were hurt expresses that to that person, 'Hey, that was upsetting, could you please not do that again?'" Merulla-Bonn said. "If that person says, 'I didn't do anything wrong' or 'I'm sorry you feel that,' it's really annoying, in general, because they're not accepting they did anything wrong, they're just making themselves feel good."

PHOTO BY JOSH SAUNDERS
  • Photo by Josh Saunders

Merulla-Bonn's experience with self-advocacy has ultimately brought him to a universal and timeless message — everyone can always use someone in their corner.

His parents, Sally Bittner Bonn and David Merulla, said Merulla-Bonn is quick to stand up against injustice, be it classmates being bullied or racism or some other form.

"I think some kids can't really face stuff like that," Merulla-Bonn said. "So when other people help out, it's just good."

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