It’s a December weeknight at the Wells Fargo Center, where the Flyers are clobbering the Buffalo Sabres, the rock music is pounding through the PA, and this garish, pizza-scented, freezing-cold arena has become Josh Silverman’s place of grace.
For the fourth year in a row, Josh, 34, who is intellectually and developmentally disabled, has not missed a single Flyers home game.
He loves hockey, yes. But the action on the ice is only part of the game experience that makes him happy before, during and after those three periods of play.
Basically, thanks to staffers and regular attendees, Josh is the Flyers’ unofficial home-game mascot. Which is kind of amazing, because someone like Josh would not normally be a shoo-in for such an honorarium.
He speaks only a few words and phrases, which sound garbled. His effusiveness can be off-putting: he will sometimes hug people he does not know or stand too long after the Flyers score a goal, blocking the view of fans in the seats behind him. And he can grab your arm and not let go, while making insistent noises about something that’s obvious only to him.
But no one seems to mind.
From the moment Josh and his dad, David, enter the arena at 5:30 p.m. for the 7 p.m. game until the moment they cross the parking lot for the ride home to Marlton, Josh is treated with deference and love.
“Hey, buddy!” says a burly guard, high-fiving him at the entrance for season ticket-holders.
“Hi! Hi! Hi!” answers Josh in an excited, high-pitched voice. This is probably the hundredth time he has greeted this same guard, but Josh acts as though he hasn’t seen him in 100 years.
“Hello, handsome!” calls the waitress in an adjacent lounge. “We going to win tonight?”
“Win!” he says, bobbing his head. “Win!”
He’s short and round in his Flyers jersey, with thick, dark hair and darting, bright eyes and a joyous grin he flashes as he makes his way – a little too quickly for his unsteady gait – around the concourse.
Shouts of “Hey, Josh!” and “We’re beating Buffalo, right Josh?” follow him from section to section, eliciting his thumbs-up sign.
He passes Maureen Kalfus at Lorenzo’s Pizza, who knows that “awesome Josh” always orders pizza and hot chocolate, but “never at the same time.”
Then there’s Josh’s regular usher and frequent hugger, Marty Thomas, who calls herself his “second mom,” and the guest-service ladies – Joanie and Jill – who always try to place Josh in the same seats in the special-needs section because they’ve learned he needs routine.
And sweet season-ticket holders like Nikki Hess who think about Josh between games: She recently sent him a video from her Disneyland vacation because she knows how much he loves Mickey Mouse.
“I don’t think Josh has ever had a bad day in his life,” says Jason Tempesta, the Flyers’ senior manager for community relations. “When you see him on the concourse, it doesn’t matter if the Flyers are up by four or down by four, he’s always thrilled to be here. It makes everyone’s night better.”
His words are music to David Silverman’s ears.
“I’m so grateful and proud that people here love my son,” says Silverman, 63. “There’s no judgment, no pressure for him to conform to some standard he can’t attain. They just meet him where he’s at. Josh gets to be Josh.”
‘Love that cares and stoops and rescues’
Silverman is just one of the many parents who have contacted me since reading “Falling Off the Cliff,” my four-part series about people with intellectual and developmental disabilities – I/DD – and the families who love them fiercely.
They spoke with pride about their disabled loved ones, but also about how lonely it can be to care for them, especially as they age. Behaviors regarded as quirky or cute in childhood are seen as weird or frightening in adults, they said. Public outings take on new stress as strangers point, frown, and sometimes even ask, “What’s wrong with your kid?”
This is the downside of a community-inclusion movement that has brought so many people with disabilities out of their homes and into the public square: Not everyone in the square is ready for what they will see and hear.
But families also stumble upon – or deliberately create – places throughout this city and region where their children can simply be, and where they themselves can relax without apology, explanation, or embarrassment about the family they love fiercely. And they experience a kind of grace, a word once superbly defined by the late Anglican cleric John Stott as the “love that cares and stoops and rescues.”
One mother of three children, two of whom are 17 and 12 and profoundly impaired, told me how she left her law career to care for her disabled kids.
“The issues are straining for my husband and myself,” says the mom, who asked that I not use her name here. “We suffer from either being invisible or all too visible – the subject of long, long looks that are just short of stares. I could go on and on about the impact on my husband and myself but I think you get the picture. It’s hard, heartbreaking, and very rewarding. I didn’t volunteer for this type of parenting but I would never change my situation for the world.”
For activity, she usually takes her children for walks outside, because they can’t tolerate malls, movies or loud places with a lot of people.
One day, when it was too cold for the outdoors, she brought the kids to the Philadelphia Museum of Art. She figured it would be a calm venue that wouldn’t overstimulate them.
She never expected it to also be a place of grace.
“I was so amazed at how the staff, most notably the guards, tried to extend themselves to us,” she says. “They were kind and patient with my kids’ repetitive questions and very, very loud voices.”
On subsequent visits, she was deeply touched that the staff actually remembered her children’s names, which made her and the kids feel welcome.
“They always tried to be helpful and encouraging,” she says. “As any parent of an I/DD child will tell you, that’s almost like winning the lottery.”
Across town, Rasheem Davis has found his own place of grace at Pegasus Therapeutic Riding Academy, which sits on a heavenly slice of green on bustling Bustleton Avenue in Northeast Philly.
For 35 years, the academy has been providing riding programs and equine-assisted activities and therapies for children and adults with physical, developmental, and intellectual disabilities.
Rasheem, 32, who has cerebral palsy and intellectual disabilities, has been enrolled at Pegasus since he was 3 years old. It’s probably the best thing her son has done, says his mother, Jamette.
The therapy did more than strengthen Rasheem to the point where he could ambulate without a walker by age 6 (defying the doctor who’d said Rasheem would never walk on his own and advised Davis to institutionalize her son).
It gave him a place to belong.
“It socialized him,” says Davis. “He never felt like he was being judged, so his confidence grew. He even competes in the Devon Horse Show” Therapeutic Riders Division, where he routinely nabs ribbons.
“What that has done for him psychologically has been amazing. When he’s at Pegasus, he’s just Rasheem. He knows everyone, everyone knows him, and he just feels part of everything.”
Which is quite a contrast to the broader world, in which Rasheem is not aware enough of his surroundings to look out for his own well-being. He needs someone with him at all times. But at Pegasus, among 14 geldings of all shapes and sizes and a cadre of accepting staff and volunteers, he cleans the barn, grooms the horses, perfects his turns and trots, and experiences independence.
Says Davis, “That’s such an important thing for a young man.”
Pegasus began as a small program for 15 mildly disabled children and now serves 100 riders per week. Jim Wurster is hoping for that kind of growth for the weekly coffeehouse he co-founded in 2015 for people with disabilities and their families.
Wurster, 69, and his wife, Maria, 64, live in Delaware County with their daughter Alicia, 29, who is autistic and intellectually disabled, and has bipolar disorder and compulsive behaviors. A few years ago, as Alicia struggled mightily to get through days that have worsened as she’s gotten older, her parents struggled just as mightily to find public places where they could be together as a family without the rude stares that often go with it.
“Sometimes it’s just easier to stay home. But it’s lonely,” says Wurster, co-founder of New Avenue Foundation, a nonprofit that oversees community inclusion, housing and employment programs for people with disabilities.
So in 2015, New Avenue co-created a Friday-night coffeehouse with Tree of Life Church (formerly Princeton Presbyterian) in Springfield, Delaware County. Called “Our Community Cup,” the gatherings happen at the church and feature live music, a pay-what-you-want admission fee, and an accepting vibe where no one gets bugged when attendees rock in place, shout out, or melt down, kicking. Instead, they socialize.
“No one cares, because everyone gets it,” says Wurster. “And it’s fun to hear people’s stories, even if they can take a long time to tell. A lot of time, all parents want is someone to listen to them; it’s not necessary for anybody to come up with solutions. We just get so isolated taking care of our kids. This gives us an opportunity to talk in an adult world.”
That opportunity is expanding at Tree of Life, which has a new mission to minister to people with disabilities and their families.
“A really cool community has been growing around Our Community Cup, and this is a natural extension of that,” says Pastor Pam McShane.
“People told us how their disabled children were not welcome at other churches. That’s so sad. These are people with gifts as well as disabilities. We take time to get to know the person, find out what gifts they have and help them find a place to share those gifts.”
Anti-Hollywood version of disability
In the new movie Wonder, the central character, a boy named Auggie, has a severe facial deformity that leads to his being bullied mercilessly at school. Auggie is smart and precociously self-aware, with a winning personality and spunky way of expressing himself.
Typical for Hollywood, by movie’s end adorable Auggie has proved to everyone that his courage and nobility are stronger than any taunt lobbed by a middle-schooler. The movie’s conclusion shows him being rewarded with a standing ovation from the same student body of heartless brats who once made his life a living hell.
Oh, how Abby Book loathes the tired typecasting of Wonder.
“Once again, you’ve got a hit movie that shows a very Hollywood version of disability,” says Book, 41. She lives in Boiling Springs, about a half-hour southwest of Harrisburg, with her husband and their 14-year-old triplets, one of whom – Evan – has a decidedly anti-Hollywood version of disability: He’s neurologically impaired, and has a very low IQ and apraxia of speech, which means his brain won’t let his mouth form the words he wants to say.
In movies like Wonder, Book says, the disabled protagonists are always independent and cute and easy to love.
“Just once,” she sighs, “I wish Hollywood would portray a disabled person who’s like my son. Evan doesn’t speak. He drools. He always has his finger up his nose. He puts his face in your face. He poops his pants. He will never be able to read or write. People like him don’t have much to offer society. But because they’re human, their humanity itself should be enough for society to love and accept them.”
Thankfully, Evan experiences many places of grace.
The aides and staff at Boiling Springs Public High School, where Evan is enrolled in life-skills classes, just plain “get” him, says his mom; the principal even lets Evan accompany him on hall patrols.
At the public pool, the lifeguards look out for Evan and all the adults give him happy waves. At the family’s church, Evan is deeply loved and senses how thoroughly he is knitted into the congregation.
None of this makes for a grand Hollywood moment, but it does make for the small lovely ones that matter to a kid dealt a very difficult hand.
For Ron Bishop’s son, Neil, such moments unfold in three favorite settings: a swimming pool, where he can slap-splash; stairs of any kind; and on the escalator at Barnes & Noble at Christiana Mall in Newark, Del.
The store has become a place of grace for Neil, 15, who has cystic fibrosis and is intellectually disabled. He spends hours moving on and off the escalator, says his father, Ron, pushing the guide rail as if he alone is powering it.
“The bookstore staff from the start of Neil’s fascination with the escalator has been extremely kind and accommodating,” writes Bishop in the forward of his compelling new book, Holding Up the Sky Together: Exploring the National Narrative About People With Intellectual Disabilities (Hamilton Books, 2017).
“My wife, Sheila, and I know many of them by name,” writes Bishop, 55, a communications professor at Drexel University. “We greet them as though they were coworkers, even friends, though a few of them aren’t completely sold on the idea of allowing a teenage boy with special needs to commandeer their escalator for 90 minutes at a time….
“Other kids have been castigated for their rambunctious escalator behavior, but Neil rolls merrily along, up and down, laughing and observing. Once, when one of the escalators was shut down for repairs, a genuine look of sadness crossed the face of Tom, who like many of his colleagues has come to know what these visits mean to Neil and has graciously given him space.”
Small moments that matter
If this column were a Hollywood movie, this is where the music would swell, and we’d see Rasheem Davis from Pegasus Riding Academy standing next to Josh Silverman in his Flyers jersey. Evan Book, Alicia Wurster, Neil Bishop would join them, and they’d rise up and sing an anthem of thanks to those who see them beyond their disabilities. The movie would end to thunderous cheers from the crowded theater.
But this is not Hollywood, and the families that struggle multiple times a day do not have big Hollywood moments. Like all of us, they have small, real ones that unfold in everyday places of grace – in a bookstore or museum, on a horse or an escalator. In a single moment, it is possible for love to care, stoop and rescue us from loneliness and disconnection, reminding us that we belong to this world, just the way we are.