"There may be people who have more talent than you, but there's no excuse for anyone to work harder than you do.”For David, a Dansville native, Hilltop contracts for janitorial services aren't just jobs; they are a daily relief from the pain of a rare genetic disorder that affects movement in his legs.
"I have to push myself," says David, who suffers from Hereditary Spastic Paraplegia (HSP). "Movement is really the only thing that makes my legs feel a whole lot better. At work, when I'm getting fewer hours in a week, my legs will really start to hurt. If I can put in a couple of extra hours a week doing cleaning jobs, that's when the benefit kicks in."
HSP is a group of inherited diseases whose main feature is progressive stiffness and contraction in the lower limbs as a result of damage to or dysfunction of the nerves. It is not a form of cerebral palsy, but manifests itself in similar ways, such as difficult, painful walking.
David's condition is classified as a "rare disease" by the National Institutes of Health, which means that the disorder affects fewer than 200,000 people in the US population. No specific treatment is known that would prevent, slow, or reverse it, and individual prognoses vary in severity. David is hopeful, but understandably cautious after witnessing his late mother, uncle and grandfather struggle with HSP's debilitating effects.
"I started feeling it pretty bad in late 2002, but I didn't get it looked at until 2012," admits David, who walks with a noticeably abnormal gait. "At that point, I had a series of MRIs, where doctors diagnosed my HSP and also removed a bad disc in my back. The doctor who performed my surgery said that my HSP might not progress beyond what it is right now, or -- on the other hand -- it might land me in a wheelchair someday."
Shortly after his surgery, David enrolled at Hilltop. David, who also has a diagnosed learning disability, had held various jobs throughout his life, but "nothing big time," he says. But janitorial work was in his blood; both his mother and father had held cleaning jobs, his father at SUNY Geneseo and his mother at local homes, doctor's offices, and businesses.
After demonstrating his work ethic as part of a Hilltop enclave at a local print shop, David soon began taking on NYSID contracts, with a determination to continue a family tradition of high-quality janitorial work.
"I like the challenge of my job," David says. "I like trying to meet the needs of what has to be done, and trying to improve each time. I have a pickiness about cleaning. I want the places that I clean to look like a five star hotel."
Today, David's cleaning skills are in high demand, and he is able to earn a living wage at it thanks to the NYSID Preferred Source Program. He typically juggles multiple community cleaning jobs, including NYSID contracts at the New York State Department of Transportation (DOT)/Livingston County site and the Finger Lakes DDSO Dogwood Day Services location. Hilltop also entrusts David with its in-house cleaning, and to clean at KidStart, its sister children's services program.
"Because we are a highway building, it tends to get very dirty," explains Melody Whitaker, office manager at the DOT. "There is a lot of dust, dirt, the guys track in tons of mud, and sometimes it's like there ought to be a hazmat sign on the guy's bathroom. David does a fantastic job. You don't have to stand over him; he just knows what to do, and he does it right the first time."
"Even with his disability, he can outwork most people," adds Hilltop Supported Employment Manager Diane Parker, who supervises David. "It's like he can see dirt a mile away. He'll just look at something and know that it needs dusting. David takes great pride in his work."
David typically works as part of a team of 2-4 Hilltop workers, cleaning offices, bathrooms, hallways, and emptying trash receptacles. As the de facto leader of his team, David's friendly demeanor and eye for quality set a positive example for his peers.
"I try to offer advice to the other workers," David says. "When I first was suggesting things to one of my coworkers, I wasn't sure how much she appreciated it. But before I knew it, she was trying to keep up with me, and I was getting compliments about her work. She ended up getting a $12 per hour job. It was inspiring to help somebody else get ahead."
David is frugal with his own earnings, using his paychecks mostly for food, rent, and medicine needed to manage his HSP. He shares a modest apartment with his brother, located above David's doctor's office. Family means a lot to David, so he puts extra money in the bank whenever he can, hoping to use it to visit out-of-state relatives.
Equal to the dedication that David shows at work is his passion for helping others. Over the years, he has cared for frail family members and friends. Presently, David often spends his day off with an elderly uncle who has taken up residence at the Center for Nursing & Rehabilitation on Murray Hill in Mount Morris.
"I like to do it, and the fact that it is on a steep hill helps with my Hereditary Spastic Paraplegia," David says. "I walk as much as I can when I'm up there."
David continues to face life's challenges with positivity and good humor. Last summer, while on a short walk from Hilltop to a neighboring restaurant, David took a fall. The resulting injury kept him from his job for close to two months.
"I couldn't stand it," David says, reflecting on his medical leave from work. "I sat still for three days, and then I couldn't take anymore. Before you knew it, I was going all over town in a wheelchair. People were asking, 'What's this fool doing?' But I can't just stand to sit still. I’m a stubborn person; let's put it that way."
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