West Orange Family Raises Disability Awareness, Celebrates Life

WEST ORANGE, NJ — Diagnosed as an infant with a rare brain malformation called lissencephaly, Benjamin De Simone wasn’t expected to live for more than a few years. But now – after his 20th birthday – the West Orange resident and his family are using his inspiring perseverance as a way to raise awareness about disability and special education issues.

On Wednesday, Oct. 30, De Simone and his mother, Joanne, will be appearing at the final stop of the Automotive Mobility Awareness Tour at Kessler Rehabilitation Center, 1199 Pleasant Valley Way in West Orange. During the event, NMEDA dealers from New Jersey will have new, wheelchair accessible vehicles on display, as well as an educational training session and an ice cream sundae bar.

The event takes place from 11:30 a.m. to 1:30 p.m. People can RSVP by calling Alan Byrd at 407-415-8470, or by email at alan.byrd@evokad.com.

According to Joanne, for most of his life, her family has been constantly challenged with transporting Benjamin from one place to another, as a wrong move or problem during a lift could easily break his fragile bones.

“I wouldn’t go places because I didn’t want to lift him twice,” De Simone said. “If you are never leaving your home, you become invisible, a non-person.”

She’s since purchased a customized, wheelchair-accessible vehicle, and it’s made a big difference in their daily lives.

“He gets to go out and see his brother’s cross-country races and enjoy all the big moments in our family’s lives,” De Simone said. “He’s able to integrate into our lives and we can build awareness as we build Ben’s world and the world gets to know Ben.”

However, there are still big hurdles remaining for the De Simones and their son, Joanne wrote in a touching blog post on The Rumpus in January:

“John and I aren’t getting any younger. When we die, Benjamin will need to live in a Medicaid-funded facility. No one in our families can drop their lives to take care of an adult with the needs of an infant. While community residences have replaced institutions, waitlists are thousands long and Medicaid is more fragile now than ever. I would like to believe a facility could uphold the quality of life goals John and I set for Benjamin. I’d like to believe hired staff could compensate for the bond we have with our son, but I don’t. Benjamin is my first-born son. I don’t want to watch him take his last breath, nor leave him behind to die alone hooked up to machines controlled by a flawed system. Either way it won’t end well, but I can live with this unresolvable conflict because dance taught me to move freely through pain. Pain is not the enemy, but a messenger. Give it the attention it deserves. Then refocus.”

Read more about the De Simone family’s struggles and successes.

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