For too long, those living with Down syndrome (DS) haven’t been afforded the same opportunities others are presented. Now, advocates all around the world are doing their part to erase the stigmas surrounding the limitations of the disease, including right here in Delaware.
Alex Kearns, a 15-year-old freshman at Olentangy Berlin High School, was selected last month to serve as one of 33 ambassadors around the country for Nothing Down, a global organization that has set out to rewrite the narrative on DS. The application process for the ambassador program fielded more than 500 applications coming from 45 states.
“Nothing Down is an organization that has set out to change the perception of Down syndrome, to change the dialogue around it,” Alex’s mother, Jen, said. “There are a lot of misconceptions about what people with Down syndrome are capable of doing, and we just want to change the conversation surrounding that.”
In many ways, Alex is the embodiment of what Nothing Down — and the act of inclusion — represents. He is active in school, enjoys science, participates in the inaugural year of Berlin’s broadcast journalism program, and is also in the choir. He serves as the team manager for the soccer program and is also on the freshman cabinet as well.
Jen said inclusion is very important to them, which is why Alex spends his school days in general education classes with his peers, as well as in the extracurricular activities.
As an ambassador, Alex and his family represent the organization through community outreach, mainly via social media platforms, by showing everything Alex is able to do and all the opportunities that are available to him.
“Advocacy is very important to us … He’ll be out, maybe not entirely on his own, but we’ll see what happens, and we want different opportunities available to him,” Jen said. “And I think to get there, we have to change the conversation. He’s capable of living independently, having a job, going to college, and doing all of these things. Spreading that awareness is important in order to open the doors and to have more opportunities in the future.”
Jen said the best way for Alex to be an ambassador is to go out and continue to take advantage of the opportunities that are available to him — opportunities that should be available to all who are living with DS but isn’t always the case.
“I think it’s a great illustration and a great example for him to set for the entire community,” she said of Alex’s involvement in various activities.
While Alex continues to champion the cause as an exemplary show of what Down syndrome’s limitations, or lack thereof, really look like, he isn’t the only advocate in the family. His sister, Addie, has managed to have her own profound impact on the cause.
Addie, a student at Hyatts Middle School, said she has been fundraising for Alex’s Columbus Buddy Walk team, which completed its 16th walk on Sept. 29, since she can remember, beginning with drawing pictures and selling them for donations. Through various fundraising events over the past three years, she has helped raise $10,000 in donations to the Down Syndrome Association of Central Ohio (DSACO).
“I feel like it’s never really been a decision I’ve had to make, it just seems like the right thing to do, to raise money and to advocate for equal opportunities,” Addie said. “For people not just with Down syndrome but with any disability.”
Addie said that while she always knew Alex as “different” in ways, he has always simply been her big brother.
“He inspires me to advocate for other people because he shows people that he can do it, and so I think that maybe we can inspire other people to show that they can do it and that misconception will change,” Addie said.
Team Alex, alone, has raised around $100,000 through their years participating in the Buddy Walk.
Jen said she doesn’t believe Alex is aware there are perceived limitations to what he can accomplish, acknowledging he may have to work harder than others at some things. But she said Alex is just as motivated to accomplish whatever he sets out do as anyone else is, which she attributes to the support system Alex has both within his family and in his friends at school.
“Inclusion is a huge part of that,” Jen said. “If we continue with the idea that people with disabilities have to be segregated, then the opportunities for them to live independently and have college and job opportunities just won’t follow. And inclusion has to start right from the beginning —the very first time you set foot in a playgroup or a preschool — and it has to follow through post-secondary opportunities.”
Jen said of the advancement in inclusion, “We’re getting there. It’s not easy, inclusion isn’t a one-size-fits-all solution. One person might think inclusion is just being kind to somebody like Alex, where in reality, it’s so much more than that. There’s a big education piece to that; it’s coming around but it’s slow.”
To learn more about Nothing Down and all the opportunities the organization presents, as well as to learn more about their ambassador program, visit their website at www.nothingdown.org. For more information on DSACO, including details for next year’s Buddy Walk, check out their website at www.dsaco.net.
Reach Dillon Davis at 740-413-0904. Follow him on Twitter @DillonDavis56.