Living Life and Making Plans
McDonough, Georgia (Senate District 17)
Ben was born at 27 weeks and weighed only 2 lbs, 8.5 oz. He was placed in a neonatal intensive care unit for almost two months. Whether his cerebral palsy was caused by either too much oxygen or too little remains unknown to the family. After the reality sank in, Ben’s father John, decided: “I want him to have as full of a life as we have.”
Ben’s mom Susie, his sister Olivia, his cousins, aunts and uncles were all on board with that decision. Everyone took turns helping to raise Ben. His older cousins played and rough housed with him and Ben took a few knocks and scrapes as a result. “We played harder with him than we knew better – we skinned him up pretty badly,” says his cousin, Misty. When he got older his Aunt took him to rock concerts and his Uncle took him hunting in Monticello, GA. (A magnificent deer head that Ben shot watches over the family living room; a Georgia Bulldogs hat hangs from its right antler.) (Story continues below after slideshow.)
And while Ben has used a wheelchair since he was five, the family and Ben see the chair more a catalyst for their problem-solving and teamwork skills. “And because I know my body, I am part of the problem-solving of how we are going to do it. We’ll come up with a plan as a family to make it work.” The Oxley family gets going remembering some of Ben’s adventures, one interrupting the other: Remember the time we took Ben on a banana boat that bounced so hard? Or the time when he jumped out of a plane and parachuted to earth?
After he graduated from high school in 2006 and watched his friends go off to college, Ben hit a slump. He went from being his extroverted and active self to being at home with not much to do. There were few resources that were a good match for him in his community, which is outside metro Atlanta.
In 2007, his mom Susie found Vocational Rehab, a program that helped Ben get a job at Publix, where he worked for ten years as a greeter. Susie wanted to find other outlets for Ben but found that traditional “day programs” were too limited to meet Ben’s abilities or interests and wouldn’t stimulate his mind enough.
Then Susie found out about a training program called Partners in Policymaking. For nine months Ben learned how to be an advocate, how to speak in public and interact with lawmakers. That led to Ben becoming an advocate with the Unlock! Campaign of the Georgia Council on Developmental Disabilities, which aims to get more funding for people with disabilities. The connections he made at Unlock! led to Ben learning about the Medicaid-funded New Opportunities Waiver (NOW). This program gives families funds to hire a part-time caregiver who can provide logistical, life-skill and caregiving support to people with disabilities. Ben was one of the lucky ones, who got his waiver after a nine-month wait.
Having the waiver allowed Ben to get out of the house and access more appropriate programs and resources. He took a weekend training with the Center for Leadership in Disability (CLD) at Georgia State University in 2016. His caregiver went with him to assist with driving, feeding, writing and navigating a hotel stay. The Center invited Ben back to become a trainer, and Ben volunteered to work with an HIV prevention group focused on reaching people in the intellectual and developmental disabilities (I/DD) community. He continues to work in both capacities with CLD.
And what are Ben’s plans for the future? He wants to do public speaking and train others to advocate for themselves and others. He wants to write a book. He has a YouTube channel. He wants to start his own business – a clothing line for people who use wheelchairs. Ben has no shortage of dreams. Thanks to the support of his family and the NOW waiver, he has every reason to believe he can achieve those dreams.
Writer: Moira Bucciarelli, Photographer: Haylee Fucini-Lenkey