Source: St Louis Post Dispatch
If the Ryan Phillips life story were made into a movie, the McGuffin, the most desired thing the determined 11-year-old hero could imagine in the opening scene, would be to live on his own. Phillips knew in middle school he wanted to be free to come and go as he pleased, beholden to no one and in charge of his life.
This isn’t a movie, but Phillips and his family pursued that McGuffin. Their hard work, deliberate strategies and unwavering commitments made his dream come true. Since the age of 18, when he moved into his college dorm, until today, Ryan Phillips, now 24, has lived independently in an apartment designed with universal design principles that help him function well.
He lives with cerebral palsy, a neurological disorder that affects movement and muscle coordination and has kept him in a wheelchair since he was 3. He’s never without his chair, an assistive marvel of technology that keeps him moving. He stashes a spare in the living room of his stylish apartment in the Central West End.
Everything else in the apartment speaks volumes about the man who lives there, from the Cardinals Way street sign near his bedroom door to the GQ magazines stored under his wide-screen television. Books, tapes and games neatly stacked wait on a bookcase. Individually packaged snacks of potato chips and granola bars, bananas and cookies sit in a basket in the kitchen.
Framed photos of his family and his family dog hang on the walls. In one, he sits in his chair in a white Cardinals jersey. His brother Chad kneels on the path next to him. Both men raise arms in a victory gesture.
“Chad’s in Washington, D.C., now,” Phillips says. “He’s two years younger than me, and we’re both fans.”
When it’s time to take photos, he raises his chair to a standing position. Phillips cannot stand unassisted, but the chair gives him an option. “This is a great chair. Sometimes you want to look a person in the eye. I can’t be without a chair, so I always have a spare,” he says as he gestures to the corner. He removes a red and white lanyard holding his keys and a fob from around his neck. “My dad had this made for me from parachute ripcord,” he says. “Most lanyards fall apart pretty quick, but Dad knows this cord is really strong.”
He’s dressed for the shoot in a handsome gray shirt and black pants with cargo pockets. “It’s not easy for disabled people to find interesting clothes,” he says matter-of-factly. “I found these pants on the Internet. They have an elastic waist, which works for me, but they’ve got style.”
Halfway through the shoot he says, “I can’t smile much longer,” a hard truth about the effort each move and every gesture costs him.
“I grew up in Valmeyer with a stubborn dad — I come by my stubbornness naturally. I went to kindergarten with other kids with disabilities, and then I was tested and found I could be in the mainstream inclusion. I graduated from high school, with my class, on time, and I’m proud of that,” he says. “Growing up, my friends were able-bodied. When I got to college, my roommate was disabled, too. It was the first time I talked to someone who really understood what it’s like.”
He still loves movies and literature, but he’d like to see more honest representations of disability reflected on the screen and in print. “When able-bodied people play the disabled, no matter how good they are, it isn’t truth. It’s very noticeable to those with disabilities. I’d recommend the movie ‘Murderball.’ It’s real, not acting. Or ‘Max and the Magic Pill,’ which is about Max Starkloff, and it shows his real life, all of it. We need to be seen as we are.”
Phillips hires caregivers who come in three times every day, morning, midday and night. His family fills in when a caregiver doesn’t show. They also help with grocery shopping and with taking him to doctors’ appointments. Until recently, he worked as a ticket taker at a local movie theater. He’s seeking another job that puts him in contact with people.
“If I were to give advice to the able-bodied, I would say don’t be overly courteous because I’m disabled. What attracts me to people is whether or not they can look past my disability. Not everyone is open to learning about disability. That can be hurtful, but I’m a people person and I’m friendly to everybody.
“A lot of effort goes into living on your own when you’re disabled,” he says. “But I’m able to go out and go wherever I want without anyone telling me when and how. It’s important to remain independent despite what happens in life. Everyone, whether they’re disabled or not, has to go through the tough parts to get to the good parts.”