BETTER TOGETHER: Member with cerebral palsy says he's a normal guy
Updated: Aug 15, 2019
Spend an hour with Joe and it’s easy to see why his family, personal care attendants, and
VIABILITY Case Manager Leonor “Lee” Maagero adore the 24-year-old college senior from
Wilbraham, Massachusetts, who insists he’s just a normal guy. Yet, his charming personality and witty sense of humor are only part of the story.
Born Joseph Steven, he is the oldest of three children and the only one in his family with a
physical disability. At childbirth, Joe was deprived of oxygen for too long, which caused damage to the part of his brain that controls movement, muscle tone, balance, and posture. As a result, he has cerebral palsy – a disability that affects a person's ability to move. Joe uses a powered wheelchair and benefits from support with self-care activities. But when it comes to wit and humor, Joe is on his game.
Lee, a senior living coordinator with our Community Living team at 979 Dickinson St. in
Springfield, Massachusetts, met Joe five years ago and has since become an important part of his support team. Joe has been an important part of Lee's work as well; Lee’s first vocational rehabilitation assessment on the job was with Joe. VIABILITY staff work collaboratively with members during the intake process to determine their skills and capabilities, and to help members set personal goals for employment and/or higher education. During the initial conversation, Lee said she remembers asking Joseph, as she calls him, what he wanted other people to know about him. He answered, “that I’m normal and I’m smart.”
“That just stayed with me because it’s so profound,” Lee said. “He’s so smart and funny.
He’s an old soul in a young body.”
After working together to establish Joe’s goals for higher education during the assessment, Lee continued to be an advocate for Joe and his family. Joe soon began his college education at Westfield State University in Westfield, Massachusetts, and Lee often discussed matters with university officials that affected the freshman’s experience, particularly when it came to living on campus.
In order to experience college fully, Joe chose to live in the dorms, which meant working with university officials to ensure Joe had appropriate housing accommodations and several personal care attendants, or PCAs, who assist him with daily self-care activities and homework assignments. He also receives support from Lee to help resolve issues when his mom, Nancy, can’t be there due to other obligations or when university officials insist Nancy not be present because Joe is legally an adult.
“That was Joseph’s first time away from home and he was new to being out on his own. He was very quiet and very soft-spoken, and didn’t ask for anything,” Lee said.
Lee has since encouraged Joe to speak up for himself when he feels he is treated unfairly and Joe has become more assertive in advocating for himself and communicating his needs with others.
In fact, not long after Joe began living in the dorms, he fired his caregivers. His mother had spent a long time organizing their schedules for Joe’s college life. In their place, Joe teased that he had found and employed “young, beautiful blonde women.”
“I almost had a heart attack,” Nancy joked. “I was like, ‘Are you kidding me?’”
Despite Joe’s spontaneous act, many of the new PCAs were a better fit for Joe and stayed with him until they graduated.
Joe’s increased confidence has become apparent in other ways, too.
“I have been in meetings with this guy where he takes over the room and I’m like, amazed,” Lee said. “I go back to that meeting where he had an advisor who wasn’t helpful at all. We had to have a meeting with the Dean of Faculty, and I thought I was going to have to do a lot of the talking. Joseph took over clearly expressed how he felt and what he needed from the university. He was confident and funny. I was just blown out of the water.”
During the conference between Lee, Joe, Nancy, and the Dean of Faculty, Lee recalled when Joe jokingly said he’s not interested in a friendship with his advisor, he just wants to him to do his job.
Carlos Feliciano, one of Joe’s PCAs who’s been working with the family for the past five months, agreed and spoke of the adversity Joey, as he calls him, faces.
“There is a stigma, and that’s what he has to go up against,” Carlos said. "Just because he may move or speak differently because of his muscle range and function, does not mean he’s not a normal 24-year-old man. This dude is hilarious.”
After two years in the dorm, Joe decided to move back home. He realized, although it had its favorable moments, the lifestyle of staying up all night and still making it to early morning classes, wasn’t for him.
At home, his bedroom is decorated with posters of NASCAR, wrestler turned actor John Cena, New England Patriots’ quarterback Tom Brady, and photos from various memories. The Wilbraham house is outfitted to best support Joe, with a ramp from the living room to the lower-level garage and a button that automatically opens the door leading to the garage from the house – a suggestion from Lee. Plus, he has the comforts of family, including two dogs – Lacy and Spencer – and family cat, Gracy.
As Joe prepares for his senior year studying global studies with a concentration in social work, he said he is not planning on getting distracted by pursuit of a girlfriend. Instead, he is focusing on himself and his personal growth. He has a retreat and several day trips planned that he is looking forward to, just like any other normal 24-year-old guy.