Paul Perrone is just a regular guy. He loves the NFL and good music. His favorites are Johnny Cash and Bob Dylan.
“I like folk singers. There are so many (good songs) ... I like a ‘Boy Named Sue’ a lot,” Perrone said of Cash’s hit. “I like Pete Seeger too.”
He also just celebrated a big birthday — his 60th — and has marked 18 years with the same company. While this is positive news for anyone, Perrone’s situation makes it even more so — the St. Simons Island resident has Down syndrome.
The condition stems from a chromosomal abnormality. During development, an extra pair of the 21st chromosome forms, leaving those with Down syndrome with a total of 47 rather than the typical 46. It can result in a number of issues including both physical and developmental characteristics.
Years ago, Perrone living to the age of 60 would have been unheard of, in fact, many with the disorder still die young. But as medical technology and stigmas about it change, the average life span continues to grow.
Perrone’s entire life has been about proving those trends and negative stereotypes wrong.
“I just have a different chromosome. That’s it. That’s life,” Perrone said with a shrug. “But people like that I’m out there in the open. People like me. They like to see me as a 60-year-old disabled man out there working.”
That’s true. Today, Perrone is a bona fide celebrity around St. Simons Island. Everyone who regularly comes into the McDonalds there has seen him and knows him. They admire his hard work and embrace his upbeat, friendly attitude.
“People will say ‘hi Paul’ to him if we’re out somewhere and I’ll ask him ‘who is that’ and he’ll say ‘oh someone from McDonalds,’” his mother, Miriam, said.
She also remembers a time where people like her son were shunned from society. In fact, when she had Paul, hospital officials suggested sending him away to live in a home rather than caring for him herself. That, she notes, would never have happened.
“I came from a family that really treasured family, and so did my husband. We were raised to be tolerant,” she said. “So when they suggested sending Paul away we said ‘absolutely not ... he’s coming home.’”
Miriam has made it her life’s work to champion causes for people like her son. Throughout his life she has established programs to help aid social and developmental growth for those with Down syndrome and other challenges. In the early years, she helped start Camp Sunshine in Rockford, Ill.
Over the years, she has continued. Locally, she serves on the Mayor’s Committee on Services for the Disabled, where Perrone has pushed for more area opportunities. And while she has seen change, she hopes more will be done like the Penguin Project, hosted by Golden Isles Arts and Humanities, which allows youths with special needs to perform a show on stage.
“I really liked the Penguin Project. I think that was great. But we need more things like that year-around. I’d like to see an art center with weekly programs for adults with disabilities,” she said. “It really is important. I’d like to see an ongoing yearly program.”
Meanwhile, Paul Perrone will continue being an ambassador for those with special needs, showing everyone he meets that there is no need to treat them any differently.
“I have met a lot of people and families who come in and they see I’m just like everyone else. I go up to them and just say, ‘hi, I’m Paul,’” he said, extending his hand and offering a huge smile.
Coastal People appears Tuesdays. Contact Lindsey Adkison at firstname.lastname@example.org or at 912-265-8320, ext. 346 to suggest a person for a column.