Bennett didn’t want much, just a place where he could go full-tilt into the wind, flail and fling fall’s fallen leaves or sit on a high perch from which to dream while gazing over rooftops toward the horizon.
What Bennett wanted was a place to play by himself or with friends without an adult carrying him or hovering about, constantly admonishing caution.
Now, four years after his death, the dream of 5-year-old Bennett Charles McClurken-Gibney, whose inherited disease put him in a wheelchair for much of his short life, is closer to coming true.
Bennett’s Village, a proposed playground at Charlottesville’s Pen Park for all ages, abilities and disabilities, is preparing its first phase, a treehouse.
“He loved the accessible treehouse at Park365, the all-accessible park in Richmond, and he loved to be up where he could see everything when he looked out,” said Kara McClurken, Bennett’s mother and the driving force behind the project. “And he’s not the only one. It’s sort of a typical thing, especially for kids, and adults, too.”
Bennett’s Village will hold a community fun day in Pen Park from 1 to 5 p.m. Sept. 19 to show off the concept plan for the three-acre site. Besides fun, the event aims to introduce the community to the accessible playground concept and to get feedback.
“We want it to be for everyone, so the more people we can talk to and hear from, the better,” McClurken said. “A lot of people think that playgrounds are just for kids, but our vision is that this is multi-generational play area. Whether you are child in a wheelchair or a young parent or a grandparent, you can play there. One in seven adults in the U.S. has some sort of mobility challenge, and the concept we’re creating is for kids, but we want it to be a space for everyone.”
Bennett’s Village would have fully accessible play structures and spaces, the treehouse, a sensory garden, cableway, water play area, restroom pavilion and native landscaping.
The project is estimated to cost about $5 million to build, but McClurken said the plan is to develop it in phases, the first of which is the treehouse.
“It won’t actually be in a tree. It’ll be on pylons or something because a living treehouse would not be sustainable over 20, 30 or 40 years. We want to make sure the designs we’re coming up with are able to be maintained and remain safe over time,” she said.
“We went with the treehouse because it’s something everybody loves, having those views and looking down at the ground, and we wanted to make it so if you’re child in a wheelchair or a parent or a grandparent, you can go up there and play, too.”
It is right that a park on nature’s outskirts should bear his name because Bennett was a natural force.
In videos on the Bennett’s Village Facebook page, he can be seen running his motorized wheelchair like he was born to it. His smile and his energy make the wheels seem an advantage rather than an impairment.
“He was something else. He loved the ladies and was a real ladies man. He had a relationship with everybody. You’d think a child in a wheelchair would be sitting in a corner, excluded, but Bennett had this light that drew people to him,” McClurken recalled. “If he wanted something across the room, he’d convince someone to get it for him. He had a way. If Bennett were still alive, this playground would be built because his personality would just lead people to write checks.”
Bennett seemed a normal baby, but McClurken said it became obvious he wasn’t progressing as well as he should. Doctors confirmed that and set about doing tests.
“It took months and months of testing. At one point, we thought he might have infantile botulism and you’d probably think, ‘who wants their kid to have infantile botulism?’ Well, among the other things we were looking at, infantile botulism seemed pretty good,” she recalled.
It wasn’t botulism. It was much worse.
Spinal muscular atrophy is a rare disorder that progressively destroys neurons that control skeletal muscle activities such as talking, walking, breathing and swallowing. When signals between neurons are disrupted, muscles weaken and waste away.
Those with Bennett’s version of the disorder usually live about two years.
“It’s so rare that in the first round of testing, they didn’t even bother with it. I told them to test for it because it’s the one I don’t think I can handle. It’s the one that has terminal implications and I’m not OK with that,” McClurken recalled.
“After months and months of all these tests, I get the phone call at work that no parent wants to hear,” she said.
The doctors told his parents to take him home and love him. Mom and Dad did more than that — they sought treatment.
Bennett responded. At 5, he was healthy despite his affliction and was looking forward to his birthday party. He wanted it to be at Richmond’s accessible park so he could run beside his friends in his wheelchair, climb the treehouse and be one of the gang.
“I said, ‘honey, you can’t ask your friends to drive over an hour to go to your birthday party.’ And he understood,” McClurken remembered. “He was a little disappointed but he had a great birthday party and a great time, anyway.”
A kindergartener at Johnson Elementary School in February 2018, his family was in charge of providing eggs and butter for his classroom’s big “Green Eggs and Ham” event. Unfortunately, the flu hit the school hard and it also put the hurt on Bennett, who had to be hospitalized.
“When your muscles don’t work very well, it makes breathing difficult, and with a respiratory illness, that makes it even harder. We’d been through hospitalizations before so we knew it would be a long way before we got him back up to normal,” McClurken said.
“But we came home on a Tuesday and 24 hours later, he was gone. Unbeknown to any of us, sepsis had set in. By the time we got back to the hospital, it was too late,” she said. “We were not prepared for that.”
Some friends fetched the eggs and butter and Bennett’s bereaved family then duly delivered them to the class event.
“We were walking back home through the playground at the school and we thought about his request to have his birthday party where he could play with his friends and we just turned to each other and said, ‘let’s make Bennett’s legacy be an accessible playground,’” she said.
During the pandemic, the project received its tax-exempt, IRS-approved nonprofit status, making it easier to apply for grants. They also developed concept plans and built a strong working relationship with Charlottesville officials.
And now they are working on the treehouse.
“Bennett’s Village is in honor of our boy’s request to have a birthday party where all of his friends could play together, where he didn’t need someone to carry him and where he could just be himself,” McClurken said.
“But Bennett is not with us anymore, so it’s not about him, anymore. It’s about the kids who can take advantage of an accessible playground, kids who have cancers and other diseases. It’s about parents who are in wheelchairs because of car accidents or military service. It’s about creating a space where so many members of our community can come and be together.”
McClurken said the playground is for everyone, even as their situations in life change.
“We come into this world not being totally independent from other people, and most of us will go out of this world not being totally independent,” she said. “This playground is just a little bit of independence.”