When Nathan and Bennett Falcone met Chris Ulmer on the sofa in their Erdenheim home, magic happened. First, the brothers, then ages 12 and 8, had an interview with Ulmer — a real, live YouTuber — about their lives, interests, and family. Next, an Eagles’ player’s girlfriend saw the interview, noticed Nathan’s Birds shirt, and scored the Falcone family an invite to meet the team at the Novacare Center. A few days later, the team went to Minnesota and crushed Tom Brady et al in Super Bowl LII.
(Prediction: Philadelphians will never stop referencing Super Bowl LII.)
But the Falcones’ brush with NFL greatness was really just bonus magic. Intentional magic happened when the video transformed the family of five, including Nathan and Bennett, who both have the diagnosis of mandibuloacral dysplasia (a form of progeria), from unseen to … seen. In more than one way.
Nathan and Bennett Falcone’s first interview on Special Books by Special Kids.
Seen as in … understood. Her sons’ video and others like it on Ulmer’s wildly popular YouTube channel, says mom Phyllis Falcone, “show every kid is a kid, regardless of their differences. It shows their true personalities.” (She also says comments beneath the video have validated how she and her husband parent.)
These posts have also been literally seen. The Falcones’ first meetup with Ulmer has 966,000 views. The video of them hanging out two years later has 734,000.
This is a lot, in YouTubeland. It’s also pretty par for the course for Special Books by Special Kids (SBSK), Ulmer’s somewhat misnamed nonprofit and channel. SBSK’s 500 videos — all simple, at-home encounters where Ulmer gets to know someone with a disability — have close to 3 billion views, 3.9 million Facebook subscribers and 3.4 million YouTube subscribers. (Not impressed? SBSK’s YouTube channel has seven times the subscribers of Philly’s five major pro sports teams, combined.)
Nathan and Bennett Falcone, two years later.
Is 3 billion views enough to fulfill SBSK’s ambitious mission to “Normalize the diversity of the human condition?” Signs point to yes.
From soccer to special ed
The number of Americans with disabilities varies depending whom you ask. The CDC says 27 percent of — nearly 70 million — American adults have one or more disabilities. The U.S. Census, whose definition of disability is narrower than the CDC’s, counts 41 million non-institutionalized U.S. residents with disabilities, including more than 3 million children.
Either way, that’s a lot of us. But it’s not Chris Ulmer. Ulmer neither has a disability, nor did he set out on a path to teach kids with disabilities, let alone become a viral champion of the disability community.
Ulmer grew up in Rhawnhurst before moving to Willow Grove, where most of his family still lives. On weekends as a kid, he’d visit his grandmother, Cecilia “Cissy” Paul, a pediatric nurse — and some of the more than 130 children she fostered in her Northeast Philly home. To Ulmer, playing with kids whose life experiences differed vastly from his own was just … playing.
His other kind of playing was soccer. After high school (Upper Dublin), he became a walk-on (and a team captain) at Penn State Abington, where he got a degree in communications and media effects.
“People like him who are so genuinely kind and giving are so rare. We were disappointed when we found out that he had a girlfriend. We wanted to hook him up with our babysitter.” — Phyllis Falcone
Along the way, Ulmer’s mom, a school teacher, predicted her son would follow in her career footsteps. Chris shook off the idea. But after he graduated from college and became an assistant soccer coach at the University of the Cumberlands, he followed his boss’s advice to take advantage of their employer’s free classes. Ulmer pursued a master’s in special education, fell in love with student teaching, and left collegiate soccer for a teaching job in Jacksonville, FL.
Not only did Ulmer really like teaching kids with disabilities, he was also good at it. He was particularly good at drawing his students, most who had autism spectrum disorder, out of their shells. He’d do this by praising them in front of their classmates (a video of him doing this went viral, racking up 2.5 million views) and organizing in-classroom performances, with Ulmer playing guitar.
He initially posted these performances on Facebook to share with his students’ families, who shared them with their friends, who … you know how Facebook works. His students’ visibility made them feel more confident — and made their non-classmates feel more confident to approach them. Suddenly, they were less sequestered than before. (One former student has himself become Ulmer’s mentee in YouTubery).
“At the time, it was hard to know how my students would fit into the world,” says Ulmer. “I really wanted to form a world where they had a place and they had a value — a world they felt appreciated them.”
He came up with an idea: He and his students would write and illustrate a book series all about them — Special Books by Special Kids. After 50 publishers rejected their proposal, Ulmer went back to what worked closer to home: social media.
Ulmer interviews another Philadelphia family with a mom and two kids with autism.
Special Books by Special Kids gets social
In 2015, he said goodbye to his students and set out to conquer the world as an influencer — only the enlightened kind, with a humanitarian cause and solid FB game. “I’d saved up about $10,000,” says Ulmer. He says he figured, “I had a chance to do something truly special, and if it didn’t work out, I’d have teaching.”
Additional qualifications: youth, pleasing goofiness, good looks, an ever-alluring Northeast Philly accent, and drive. On the other hand, “I had no clue what I was doing,” he says, “I would use my phone to record the interviews, and I didn’t know how to position the camera. It was awkward, just a lot of trial and error: Doing it, watching it, doing it wrong … learning from mistakes.”
But his following was forgiving, encouraging, and growing. When ABC World News featured Ulmer in an “America Strong” segment, things really took off. Soon, his life partner Alyssa Porter left her full-time job as a museum educator to handle the business side of the operation.
How they do it
SBSK’s online presence has grown organically. No sponsored content, minimal adjusting to ever-shifting algorithms — just Porter and Ulmer and some contractors to help. They don’t timestamp their posts, “so they remain relevant,” says Porter. They embed captions, to ensure people with low hearing and deafness and non-English speakers understand what everyone is saying.
These days, they rarely post a callout for people to interview. Mostly, people come to them. Ulmer says choosing among “the tens of thousands of requests” is one of the hardest parts of his job. They typically look for “people whose diagnoses we haven’t covered before, but we also want to include more common diagnoses — and all races, all genders, all social classes, living in all kinds of communities,” he says. Kinda narrows things down, right?
Traveling to interview people gets pricey — about $1,000 per meetup. Until a few years ago, the couple paid themselves $45,000 each. Now, their nonprofit pays them a little under $150,000 combined, with help from about 5,000 donors they’ve recruited through Patreon.
“Empathy doesn’t grow overnight. Within the safety of their own homes, in their own spaces, people can deal with their own intrinsic biases. They can explore on their own time.” — Alyssa Porter
It’s important to note that SBSK has made much more money for the people they interview. Their first GoFundMe raised $70,000 so a family in Tijuana, Mexico could buy a wheelchair-accessible van — and take their dad out of the house for the first time in years. To date, the organization has helped crowdfund upwards of $2 million for their interviewees, usually to cover medical bills or housing.
A window to the world of disability
SBSK’s co-directors say they love to help people financially, but their primary focus is their mission. “We are stewards of people’s stories,” says Porter. As such, they are responsible for both their successes and slip-ups. Their online community holds them accountable. Early on, viewers pointed out that Ulmer was laughing nervously. Today, he’s less reactive, more observant.
Still, viewers may feel uncomfortable during an SBSK video. Some of the people Ulmer meets are disfigured; some interviewees can’t stay still, or knock over the camera, or openly argue with their family members. Many are difficult to understand, entirely nonverbal, or don’t seem to notice him there at all. In one interview, Ulmer stims, humming along with a young man with autism. Should he be doing that? Shouldn’t he?
Special Books by Special Kids’ interview with a man with autism and his family, wherein Ulmer stims.
Yes, but that’s not the point. The point is to watch, learn, and try to connect.
Putting these videos online gives viewers the privacy and permission to look without looking away. On YouTube, it’s OK to stare. On SBSK, it’s encouraged. “Empathy doesn’t grow overnight,” Porter says, “Within the safety of their own homes, in their own spaces, people can deal with their own intrinsic biases. They can explore on their own time.”
When Ulmer does something unusual, like stimming, he’s not just serving as an example of what to do. He’s showing his viewers to try new things. Maybe you’ll ask the wrong question, make a wrong assumption, approach too fast or too slow. But do it all with kindness, with care, and you’ll forge meaningful connections with strangers — especially kids — with disabilities.
This is why Ulmer asks every young person he puts on camera, “What should I do if I want to be your friend?”
Typical answers: “Just smile.” “Say hi.”
(Once: “Don’t touch my toys.”)
The SBSK effect
It’s amazing what one video can do. Recently, the mother of an 8-year-old Ulmer had interviewed reached out. Her son, who is non-speaking and has several disabilities, had previously been left out of school events. Then his school showed his SBSK video in an assembly — and asked how they could help him attend the school play.
“They made it sensory-friendly, made it less loud, altered the light settings, provided sensory-friendly toys,” says Ulmer. “And they made sure the other kids knew his name and greeted him when he came in.” This kind of thing happens all the time. “Nearly every child I’ve interviewed gets their video played for the entire classroom or the entire school,” Ulmer says.
Sometimes the impact is smaller — just making someone isolated feel less alone, connecting them with online friends for gaming. Sometimes, it’s huge. An SBSK video about a child with a rare skin disorder made its way to Liberia, where someone working in an orphanage saw it and helped a child with similar symptoms get a proper diagnosis and treatment. Someone in city government saw Ulmer interview a person with autism who’d survived a storm-induced flood in Baton Rouge and was living in their car because they couldn’t find a calm enough refuge — and found a better spot for them. Another interview revealed that a child’s condition was regressing because their health insurance stopped covering their treatment. A few million views later, and the insurer paid for the care.
Miracles aren’t the point, either. But they happen.
“No one is expecting us to fix their world or take away things that might be difficult,” says Porter, “But we can be a place that shares that experience, the place to find solace and support. There’s transformation that can happen by sharing videos.”
The magic of Ulmer
But there’s also something about … Ulmer. “No one can really do what Chris does,” Porter adds, “Everyone is capable of being kind and having relationships like Chris. That’s not what I’m saying. It’s his ability to sit with people, to ask really important questions, to help them share their stories. It’s his awareness of situations, his cognizance … He has a way with people.”
Erdenheim’s Phyllis Falcone saw this from the get-go. “We had complete faith in Chris from seeing his videos. There was no concern that he would ask the boys something inappropriate,” she says, “You instantly feel like you’ve known him.”
“People like him who are so genuinely kind and giving are so rare,” she says. “We were disappointed when we found out that he had a girlfriend. We wanted to hook him up with our babysitter.”
Aw, Philly. This is why we love you so.
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