For Berlin residents and twins Julia and Jessica Bonamassa, driving was not something they thought would be possible.
At 10, they were diagnosed with FSHD muscular dystrophy, a neuromuscular disease that affects the legs and upper body strength. The diagnosis came after Julia’s knees began buckling during her soccer games, and other activities, with Jessica’s legs giving out soon after. Growing up, the two were actively involved in sports including soccer, softball and kayaking.
By eighth grade, Julia had played her last season of softball, and by freshman year at Eastern Regional High School, both twins walked minimally, and used scooters for long distances.
But their lives changed at age 16, when they met a counselor from the New Jersey Division of Vocational Rehabilitation Services (DVR) who introduced them to Stacy Krubsack, a certified mobility consultant at MobilityWorks in Cinnaminson. She explained that there’s a lot involved with making a vehicle wheelchair accessible.
“You can’t just slap a ramp on a vehicle and call it a day,” the consultant said. “The vehicles are converted in a plan that’s every bit as specific and engineered as a regular auto plan, and the research and development that goes into building a wheelchair- accessible vehicle is millions of dollars.”
Krubsack and the DVR counselor worked together to share resources available to the twins, such as the Catastrophic Illness in Children Relief Fund that would help pay for the costs of a $30,000 ramp and adaptive equipment. They also provided examples of the accessibility solutions available that allow people with different disabilities to drive.
“We didn’t think we would be able to [drive], honestly,” Jessica said. “If we didn’t hear about any of this, it would have been very hopeless, and if we weren’t lucky, unless we did our own research, we really wouldn’t have known.”
While they may not be able to drive in the traditional way, MobilityWorks offered the twins cars and adaptive solutions so they could drive a car using hand controls, with a touch screen that controls most of the car’s features. MobilityWorks also offers pedal extensions, ramps, accessible seats for people who have had strokes, and scooter and wheelchair lifts. It was a lengthy process, but in December of 2020, the twins’ van was ready, and they have been driving ever since.
Julia and Jessica, now 20, will go to separate colleges: Rutgers-Camden for Julia and Rowan University for Jessica. While they are currently sharing the van, plans for a second vehicle are underway.
“Independence is an understatement. It seriously feels like such a blessing, a lifeline,” Julia reflected. “We feel like we’re normal. We’ve always felt like we’re normal because we haven’t always not been able to walk, but this reinforces that. Like Jess has said, we can do anything that we want, anytime, without having to ask somebody for help, or say, ‘Hey, I need my scooter in the car.’
“We can just drive in and it’s amazing.”
The Bonamassa sisters participated in the first stop on the Automotive Mobility Awareness Tour at Moss Rehabilitation Center in Elkins Park, Pennsylvania, on Aug. 26, where they showcased their van and demonstrated how to use it. The tour consisted of the National Mobility Equipment Dealers Association (NMEDA) and the United Spinal Association giving presentations on the various accessible transportation options available to people with disabilities. The event was attended by hospital administrators, occupational/physical therapists and patients of the rehabilitation center.
“By sharing the latest innovation in wheelchair-accessible vehicles and equipment with centers like Moss, we are truly able to assist more people who need the specialized vehicles and adaptive equipment that our automotive mobility-dealer members across North America provide,” said Danny Langfield, CEO of the National Mobility Equipment Dealers Association.
The tour will stop in Phoenix; Los Angeles; Fort Worth, Texas and Washington, D.C.
For more information about services available, visit https://www.nj.gov/labor/career-services/special-services/individuals-with-disabilities/.