Taylor Sweeting first Special Olympics athlete to be named to group’s state executive committee
By David Blanchette
Taylor Sweeting is a tireless advocate for persons with disabilities. “Just because you have a disability doesn’t make you any less of a person,” Sweeting said.
“If anything it makes you a stronger person because you have to navigate life, which is not easy with your disability.”
Sweeting should know. The 38-year-old has Asperger’s syndrome, which is on the autism spectrum, plus Type 2 diabetes and Marfan syndrome. Sweeting is a Special Olympics athlete and coach who has earned numerous medals competing in volleyball, bocce ball, soccer, basketball and javelin throw. He works as the program manager for the Jacksonville Area Center for Independent Living (JACIL) where he assists other persons with disabilities.
Taylor Sweeting is also the first Special Olympics athlete to be elected to the Special Olympics Illinois Executive Committee.
“I have been fully engaged as an executive committee member. I have duties, voting privileges, help to keep minutes of the meetings, and the organization sees my contributions as valuable,” Sweeting said. “It proves to me that an organization like Special Olympics is not just bringing athletes onto the board of directors as token members.”
Sweeting, who had been a regular board member for several years, was sworn in as a Special Olympics Illinois Executive Committee member on June 11. He shares the secretary’s duties with one other executive committee member.
“Some organizations that work with people with disabilities will have someone from the disability community be a part of that board but sometimes it’s treated as a token position so they can say, ‘See, we have someone with a disability on our board,’” Sweeting said. “It mirrors this idea of inclusion, but unfortunately inclusion is as far as it gets. That’s not the case with Special Olympics, where, as an executive committee member, I am fully engaged with the organization.”
Sweeting’s new role hits close to home because he and his wife, Katie Sweeting, have a son who competes in Special Olympics.
“Our son, Hunter, is an athlete leader for Special Olympics and that’s become a huge part of our family dynamic,” Sweeting said.
Pete Beale DelVecchio is the president and CEO of Special Olympics Illinois. He said that Sweeting is an excellent representative of his peers and will continue to elevate the work of the organization.
“We are absolutely thrilled to have Taylor serve in so many meaningful roles within Special Olympics Illinois, including as an athlete, coach, parent of an athlete, member of our board of directors, and now as a member of the executive committee of the board of directors,” Beale DelVecchio said. “While athletes have served on our board of directors for several years, Taylor is the first to serve on the executive committee, which is a significant and exciting step forward.”
“We strive to keep our athletes at the center of everything we do. Staying rooted in our mission and walking alongside our athletes ensures we are building opportunities with them, not for them,” Beale DelVecchio added. “Our athletes are highly capable leaders, and Taylor is an outstanding example of that. He brings not only perspective as an athlete, coach and parent, but also a thoughtful voice, a strong commitment to our mission, and a genuine sense of humor that resonates with those around him.”
Sweeting’s commitment to the disability community extends far beyond Special Olympics and his job at JACIL. He has become a political activist and traveled to Washington, D.C. several years ago to advocate for Special Olympics legislation. Sweeting also lobbied in Springfield for House Bill 4284, the People First Bill, which pertains to the disability community and the Special Olympics.
“I have a real passion for speaking to anybody who will listen on disability rights,” Sweeting said. “I was obviously given the gift to communicate and the strength to advocate. To not use those gifts in conjunction with the disability pride movement would be a complete injustice.”
Sweeting is a Pittsfield native and attended public schools there. He was diagnosed with Asperger’s at age three, which manifests itself with “a lot of sensory disabilities, bright lights, loud noises,” he said. “I’m actually not a very effective social person, it takes a lot of energy for me to be social and interact with people.”
Sweeting’s diabetes means that he has to carefully maintain his blood sugar levels, and Marfan syndrome makes it more difficult for him to do physical tasks like lifting heavy objects.
“With all three of these things it can be extremely challenging for me, especially on days when all of them are acting up at once and I have to balance all three of them,” Sweeting noted.
A self-professed “laid-back kid,” Sweeting participated in several extracurricular activities in school but mostly kept to himself. During those high school years, Sweeting realized his true calling was to be a voice for people like himself.
“When I was a kid, I felt like my rights were not met to the degree of my peers because of my disabilities. I never heard, ‘Oh Taylor, someday you’ll go to college,’ or ‘Someday you’ll be able to do this,’” Sweeting recalled. “Those things were never presented as a reality to me. So I feel that living in the small community of Pittsfield made me realize that people needed to have their eyes opened. They needed to see what people with disabilities are capable of doing.”
Sweeting obtained degree in social work from MacMurray College with the goal of getting into the advocacy aspect of social work as an activist or lobbyist. He also began a long-term commitment to Special Olympics, first as an athlete starting in 2022 and later as an athlete leader and coach.
The Special Olympics Athlete Leader Program trains people with intellectual disabilities to give speeches, head up projects, and push for inclusive interaction.
“You’re not just there to participate in a sport and that’s it, you’re becoming a leader,” Sweeting said. “You’re doing active things to make an impact in the organization.”
His athlete leadership and coaching roles led to Sweeting’s invitation to be a part of the Special Olympics Illinois Board of Directors, and now he is the first Special Olympics athlete to be elected to the executive committee of that board.
Sweeting is JACIL’s program manager where he advocates for people with disabilities. He and his fellow staff members help clients to fill out disability paperwork and insurance claims and to find things like sign language interpreters, specialized equipment, and assistive devices. JACIL provides support groups, educational opportunities and other activities for every age group in the community. Sweeting’s job is to balance those programs to ensure they meet the needs of the community.
“Taylor has been a friend of mine since I started working with JACIL in 2019. It’s been obvious for as long as I’ve known him that one of his greatest passions is being a Special Olympics athlete,” said JACIL Executive Director Brooklyn Knapp. “So to be on their executive committee is something that’s been a long time coming and I hope he’s proud of this accomplishment because he should be. He’s a passionate advocate for our neurodivergent consumers and his lived experiences make him very relatable to that section of our consumer base.”
Sweeting and his wife, Katie, met on Facebook three years ago and have been married for two and a half years. Taylor introduced her and her 15-year-old son, Hunter, to special Olympics and now Katie is a Special Olympics coach and family mentor, while Hunter competes as an athlete.
“My son, who has autism and epilepsy, has really come out of his shell since meeting Taylor,” Katie Sweeting said. “He didn’t do a lot and wasn’t very social, and ever since getting into Special Olympics he has so many new friends. He’s trying new things, he’s more talkative, and I really think Taylor had so much to do with that.”
She has seen the way that Taylor’s example affects Hunter.
“Hunter is trying to navigate the world as a teenager and it’s amazing because Hunter sees that it’s OK to just be yourself, you don’t have to hide or put on a face,” she said. “It’s OK to be you, which is what he sees in Taylor every day.”
Katie is equally proud of her husband.
“I love that Taylor lives every day with his disability and can still go out there and fight and help others, which is so amazing,” she said. “I’m so proud of him, he’s doing amazing things, this is just the tip of the iceberg for him, and I know many more things are yet to come for him and our family.”
Most people have heard of Asperger’s and diabetes, but Marfan syndrome is rarer and less widely known. Marfan’s is a genetic condition that affects the tendons and bones and makes a person more prone to injury. The condition also affects growth and those who have it, including Taylor, are very tall with long limbs.
“Abraham Lincoln is thought to have had Marfan syndrome, as well as King Tut and Caesar Augustus. There were a number of historical figures who likely had Marfan’s,” Taylor Sweeting said.
“Having Marfan’s and being extremely tall made one more imposing, and people took that as a good quality for a leader to have.”
Asperger’s helps Sweeting have a deeper appreciation for the neurodivergent community.
“That encompasses people such as Albert Einstein, Isaac Newton and Charles Darwin,” he said. “So I feel my disability has linked me to these amazing people where I’m an amalgam of the brilliant minds of the past and their leadership.”
Sweeting admitted that his disabilities make him “a very high-maintenance person,” but he takes care of himself mentally and emotionally so he can live comfortably with his disabilities.
“It’s not something to be ashamed of, it’s something to wear with pride because clearly you’re making it if you’re sitting in front of me talking about your disability,” Sweeting said. “That means you have successfully navigated life with this disability, and that’s something you need to focus on. Not the disability itself, but the fact that you are living with it.”
Sweeting recently took part in the National Special Olympic Games June 20-26 in Minneapolis, where “you know there’s going to be a competition but everything is based around encouragement and sportsmanship,” he said.
“The experience of seeing people with disabilities around the country coming together, especially for America’s 250th anniversary, is a representation of what America truly is.”
Meanwhile Taylor Sweeting, who lives with his family in Chatham, continues to be a tireless advocate for persons with disabilities, whether at his local job or on the state and national level with Special Olympics.
“At the end of the day, I’m happy if I can help people,” he said.
