Magic is no stranger to the scene shop in the UVA Drama Building. It's a place where worlds are routinely imagined, created, and shared in the service of art throughout the academic year and during Heritage Theatre Festival's summer seasons.
This past fall, however, there was a different sort of magic afoot, when UVA Drama Department graduate students put their design skills to use creating once-in-a-lifetime Halloween memories for children and families throughout Central Virginia.
They were part of a program called Hallowheels, a program created by the Children's Assistive Technology Service to create costumes for children with limited mobility that incorporate wheelchairs into their design.
For UVA Drama Assistant Professor Steven Warner, the project was a perfect fit. It was a chance to build bridges with the community. It was a chance to get his students outside of the theatre bubble. It was a chance to connect with the community in a unique and powerful way. And it was a chance to honor the wishes and promote the legacy of an extraordinary and brave boy whose time on earth will yield inspiration and lessons for years to come.
Bennett Charles McLurken Gibney was born with Spinal Muscular Atrophy Type 1, a degenerative disease characterized by muscle weakness. Many children faced with the disease never see their third birthdays. Bennett beat those odds by two years, packing more love and laughter into his impossibly short life than many people do who are gifted with so much more time. His parents shared these memories in his obituary:
With the loving care of his family, friends, and medical team, he was able to sing and laugh, raise his hand, race in his wheelchair, hug and snuggle and fill a room with smiles and joy. Bennett brought light and laughter to all who knew him. He blew through pre-conceived notions of disability with a smile and a twinkle in his eye. He was a shameless flirt, a caring friend, and an example of the amazing things people can be. Bennett made the world and all who knew him better by his boundless light.
Warner, who had a long history in the circus world through his time with Ringling Brothers and with Cirque du Soleil, first met Bennett when he collaborated with his father, Brian Gibney, on Moonlight Circus. The Charlottesville-based troupe of circus acrobats and performers worked with Warner on the Festival of the Moving Creature in 2012. The daylong celebration on Nameless Field capped off a semester-long collaboration between UVA Drama, Studio Art, the School of Architecture, and the Stan Winston School of Character Arts. Winston, a UVA alum, was a legendary, four-time Academy Award winner who created some of Hollywood's most iconic creatures, including the prehistoric beasts of Jurassic Park, the slimy and slithering "alien queen" in the Aliens franchise of films, and the liquid metal assassin who tormented Arnold Schwarzenegger in Terminator 2.
That partnership saw Warner's students working alongside experts from the Stan Winston School of Character Arts to build giant moveable creatures that were ultimately released from their Drama building confines to roam high above and among the public at the Festival, where Gibney and his fellow acrobats performed alongside them.
"Brian brought Bennett to all of our meetings, as he needed constant care," Warner said. "I could see the incredibly close relationship they had. At the same time, I started to see this accessible Halloween movement take off, including through the Stan Winston School's Magic Wheelchair program. I thought, what if we could build a costume for Bennett and see what collaborators might join us?"
He never got that chance. After Bennett's death, the conversation around working together to create a Halloween experience with Warner went quiet for a bit before firing up again last spring.
Warner found a perfect partner in Children's Assistive Technology Services (CATS), based in Roanoke, VA. The not-for-profit works with children and families to refurbish and rebuild wheelchairs for families in need throughout Virginia. "One of their annual fundraising efforts is Hallowheels," Warner said, "and so we were excited to partner with a Virginia-based organization and help them to grow their program."
And grow they have, going from working on six costumes in 2018 to 23 last year. One day late last summer six teams, four teams from UVA, one from Mary Baldwin, and one from Lynchburg University, came together in the Drama Department Shop to meet with the families for the first time to hear their ideas and get to work on making them happen. "The kids and families paired off with the grad students leading their projects, and the kids were able to share what they had envisioned. It was a half-hour of talking and laughing and thoroughly enjoying the process."
Three weeks later, two grad students hard at work on their projects took a break to explain what they were doing and how their process had been going. On one side of the room, Jamie Nicholas was working on an electrical issue on a Peppa Pig car that would allow a young girl to cruise in style, accompanied by a collection of stuffed animals, in a ride tricked out with full electronics, including LED lights and a horn. The project, he said, is not so dissimilar from what he might be doing in his off time, "I go from thinking, this might be cool, to saying, oh look, I've just put a hundred hours in on this. But to be able to have a real purpose for that tinkering and to be able to do something this good for others is a great feeling."
Across the way, Jessica Burnam was putting some finishing painting touches on her piece. The child she was building for was very clear about what she wanted. "Lilliana told me she wanted to be a rock star princess. That is a lot of motivation to live up to those dreams, and it has been exciting and fun to think outside of the box. I have had to think not only about the technical aspects of this – making sure everything is glued together and sturdy and fits the chair – but also, the creative aspect of it, like what exactly does a rock star princess mean? The first thing we thought was, she needs a stage float!"
The process was collaborative and fun. "She absolutely loves fashion," Burnam said, "and at one point she said, 'I feel like I'm on Project Runway!'"
Burnam was working on some construction and design elements of the float, figuring out how and where to attach some of the fabric and literally nailing down some final building needs. She had some hands-on help from Brian Gibney, who makes a point to visit often throughout the building process.
"I get a little misty-eyed talking about it," he said. "Really, a parent's wishes are just that their kids can grow up and feel loved and be a part of something. Raising a kid with disabilities is not the end of the world. We often find a way to manage our expectations, but to find a way to integrate our kids into something so basic as Halloween is huge. I love being able to give parents and kids the opportunity to experience the joy of that holiday that most other kids experience. "
The "big reveal" came on Saturday, October 26, when the families met on Charlottesville's Downtown Mall as part of the City of Charlottesville's Safe Halloween celebration. "We really wanted to have this happen at a public venue," Gibney said, "so that the kids in costumes would be welcomed into a larger community. And that is exactly what happened. All day, able-bodied kids were coming up to the kids in the wheelchair costumes and saying, 'Wow, that is so cool!" Or 'Hi Captain America!'" The looks on the kids' faces were just amazing.' It was all very abstract up until that point, and then it became clear what we are here for."
Kara McClurken said the goal of providing inclusivity was met and then some. "All of a sudden, they were just another kid in an amazingly cool costume and able to experience other kids and parents interacting with them. I was sitting at a table, and a family came by and were looking at pictures from the CATS program, and the little girl said, 'That poor child…' I turned to her and said, 'No, not at all. She is just like you! She wants an awesome Halloween costume, and guess what? There are some kids here with some amazing Halloween costumes who are in wheelchairs, and if you see them, go tell them how much you love their costumes!' She turned around and saw Peppa Pig and did just that. It felt like we were changing the way people were seeing disability, and that is what we are here for," McClurken said. "Watching the graduate students' faces, I think we changed something for them too."
Changing the way people view disability and celebrating the too-short life of their precious son is now part of a life mission for Brian and Kara. They are on the verge of breaking ground on Bennett's Village, a multi-generational, all-abilities playground that is, according to its mission statement, dedicated to making the world a more inclusive place for ALL to play. Set on 3.2 acres in Charlottesville's Pen Park, the project is a joint effort with Charlottesville Parks and Recreation, who will oversee the management of the playground once construction is complete.
Bennett's Village, which was the name the couple gave to the force of friends, neighbors, and family who pitched in and became a powerful support system for Bennett and his family, seemed like a perfect moniker for the historic playground that will find Bennett putting smiles on kids' and families' faces for generations. Bennett's Village is on the verge of breaking ground, and well on its way to reaching its goal of $5 million to make this dream of so many parents and kids a reality. For more information, and to learn how you can help, visit bennettsvillage.org.