Speaking on rare diseases
By Phyllis Moore
Published in News on February 27, 2017 7:36 AM
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News-Argus/PHYLLIS MOORE
Tyrone Starkie, left, accommodations testing coordinator at Wayne Community College, talks with Sydney Yocum, an associate in arts major. Starkie was born with muscular dystrophy and Miss Yocum has a condition called ataxia. Both will be speaking at the college Tuesday, as part of "Rare Disease Day," during a Lunch and Learn event in the student lounge at noon.
Tyrone Starkie has grown accustomed to the stares and the silence that accompanies them.
He is wheelchair-bound body because of muscular dystrophy.
But he knows something that perhaps they do not -- he can do anything he sets his mind to, except stand up straight.
It's a message he wouldn't mind sharing, if anyone would just ask.
"A lot of time people are scared or hesitant. You'll have the individual who will stare or ask somebody else the question about you, when they could just as easily have asked you the question," he said. "We have to reach the point where we can break down the barrier of embarrassment or fear the individuals hold so they can feel just as comfortable going up to talk to you, asking, 'What kind of perfume do you have on?' I'm not ashamed to ask you that because I feel that's a common question I wanted to ask you.
"That question will be no different than someone coming up to me and being like, 'Hey, Mr. Starkie, if you don't mind me asking, what is your condition? I would like to know.'"
Breaking down barriers is not new to Starkie, who was born with the disease, although the signs only manifested themselves when he was a little older.
He attended Edgewood Community Developmental School, graduated from Eastern Wayne High School and then Wayne Community College. He went on to earn a bachelor's degree and master's degree and has been working at WCC for the past 10 years, where he is now the accommodations testing coordinator.
"I'm married. I have a son. I have been on cruises. I have been out of state," he said. "I have lived a full life."
Son Josiah was born to Starkie and wife, Leah, in November.
On Tuesday, which just happens to be Rare Disease Day, he will have a unique opportunity to raise awareness, during a free Lunch and Learn event at the college that is open to students and the public.
He will be joined on the program by Sydney Yocum, a WCC associate in arts major who has ataxia, a condition that affects the part of her nervous system that controls movement and balance.
Born with the neurological disorder, she is the first in her family to have the disease, she said.
"People stare," she said. "But the people who ask to help, they take my heart."
She, too, wants others to see the person she is, a young woman who aspires to earn a bachelor's degree, despite what she calls "probably one of the rarest diseases known in the world today."
Rare Disease Day at WCC will give the duo a chance to share a bit about their own personal journeys, but more so about how they have chosen not to be defined by what may appear to be limitations.
"What I hope to accomplish is for one, to make individuals aware of the many forms of disabilities out there. Some are more prominent than others," Starkie said. "But then, also, to help individuals recognize how far we are progressing as a society with technology.
"This technology has allowed individuals like myself to be in positions where normally, maybe 40 years ago, I may not have been here. In the near future, we're going to see even more individuals who have rare diseases holding jobs, being married."
Miss Yocum approached Starkie awhile back with an invitation to make a presentation on their respective situations.
Unlike many people, she has no fear of public speaking, something she realized while a student at Rosewood High School. Her dream job, she says, would be a motivational speaker, sharing her story and educating others.
Questions are welcome, the 24-year-old student said.
"I have some friends on campus but I don't have many," she said. "I'm hoping people will say, 'Hey, she's not contagious. I can be friends with her.'"
The Lunch and Learn will be held Tuesday from 12-1 p.m. in the student lounge of Wayne Learning Center, the main building on the WCC campus. It is sponsored by the Student Government Association, which is also providing lunch for the occasion.