Father, son address challenges of disabled
Michael Bérubé and his son, Jamie, are a dynamic duo. They have a typical father-son relationship full of jokes and secrets.
Michael Bérubé is a professor of literature at Penn State University who has written many books, including “Life as We Know it: A Father, a Family, and an Exceptional Child,” which tells the story of Jamie’s first four years of life as he grew up with Down Syndrome. Twenty years later he published “Life As Jamie Knows It: An Exceptional Child Grows Up,” since Jamie, now 27, has his own story to tell, which Bérubé shared with Shippensburg University last Tuesday in the Old Main Chapel.
Jamie had a hard time being independent, but with advice and simple accommodations, he was able to gain that independence with tasks such as showering, microwaving food and being left alone, Bérubé said. However, he does not do laundry, to which Michael joked that Jamie is not the only 27-year-old of which this is true.
Jamie’s high school tried to allow him to gain as much work experience as possible. He also took some courses at Penn State. Most of the jobs he had were volunteer work in undesirable positions, such as landscaping, janitorial work and checking expiration dates at the food bank.
He did well in an intellectual and office setting, but he was always put in positions where he had to do physical labor.
People with disabilities are exempt from the minimum wage, so even when Jamie was paid, he was not making very much.
In order to get Social Security, Jamie cannot have more than $2,000 in his bank account, which made it difficult for him to save money even when he did have a good-paying job. A concern was raised that if Jamie had more assets he would probably give $1,000 to someone who needs it. Jamie would not be able to survive on his part time wages and Social Security income.
“The connection between disability and poverty is intense, and the connection between intellectual disability and poverty is even more intense,” Bérubé said. “It is simply heartbreaking.”
In 2008, Congress passed a higher education act to provide federal funding for people with intellectual disabilities. Bérubé joked that he was not going to say it too loudly because Betsy DeVos would hear about it and get rid of it.
Bérubé and Jamie made a difficult topic into an amusing lecture. Jamie reached for the phone in the middle of the lecture. Bérubé started to correct his son until he realized, “Oh, you’re checking your hair, that’s perfectly legit,” he said.
Jamie also took his father’s glasses and wore them above his own. Jamie sang “Uptown Funk” in order to lift the mood. The two ended the question and answer session with some fun impressions.