Kevin Sullivan begins each day with determination and a plan. Born with arthrogryposis multiplex congenita (AMC) — a rare condition that weakens muscle tissue and limits movement in his arms and legs — the 34-year-old Illinois resident requires care morning, afternoon and night. Yet, he has built a life focused on independence and adapting to his world.
“The way I live my life, I’m forced to slow down,” Sullivan says. “I have to be patient every single day.”
He wakes up before his first aide arrives so he can mentally prepare for the day. While relying on caregivers is essential, he admits the dynamic can be challenging at first.
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“Here’s this random person that you don’t know and all of a sudden they’re taking you to the bathroom,” he says. “But it’s something you learn to live with. There’s really not a whole lot of choice with a disability. If you want to experience life in a meaningful way, sometimes you have to be comfortable with being uncomfortable.”
Technology That Supports His Independence
Assistive devices help Sullivan move through life on his own terms. He walks with the help of ankle-foot orthotics and uses voice-activated technology for simple tasks like turning off alarms or controlling lights.
His motorized wheelchair — “one of the most technologically advanced” he’s ever had — even elevates so he can meet others at eye level. Still, any outing requires careful planning.
“I really wish people understood how much planning goes into things,” he explains, noting he researches accessibility ahead of time using tools such as Google Maps.
Baseball is one of his biggest passions, and he hopes to visit all 30 Major League Baseball stadiums. “Generally speaking, stadiums are pretty accessible,” he says.
A Routine Built Around Independence
Sullivan’s days are scheduled with the help of aides, including one who arrives around lunchtime.
“Sometimes I have to remind them that I want grown-ass man bites,” he jokes.
Before leaving, his caregiver sets up an adaptive feeding device that allows him to snack while he’s alone, using buttons he operates with his hands.
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“It has its flaws and its limitations, but it’s exciting progress for assistive technology in general,” Sullivan says. “And who knows what else could come after this?”
In the evening, another aide helps him wind down — removing the splints and shoes that keep him mobile during the day.
Thriving in a Modern Era
Despite the challenges of depending on others, Sullivan feels grateful for the era he was born in.
“I think about it all the time — if I had been born 60, 80, 100 years ago, how different my life would have been,” he says. “I definitely think it’s better for me to have autonomy and my own space.”
He believes his goals are universal, regardless of disability.
“It’s something we all strive for. I don’t think I’m too different in that regard,” he says. “I just had to find a different way to do it.”
