(Tribune News Service) – A few years ago, on one of their early dates, Shane Burcaw and Hannah Aylward were eating at a diner near his home in Bethlehem, Pennsylvania, when an older woman walked up behind Burcaw and placed her hands on his shoulders.
Then the woman began to pray. Loudly. “Everyone was staring,” Aylward recalled. “I was mortified.”
“Dear Lord, please give this boy a happier, better life,” the woman said, before Burcaw was able to interrupt her. “Oh, no, no, I have a very happy life,” he said. “Don’t you see my beautiful girlfriend?”
Aylward is tall and blond with an athletic physique (she swam for Carleton College’s varsity team until graduating last spring). Burcaw, who has since moved to Minnesota, has a preppy haircut and a sweet smile. Although his head looks like an average adult’s, his body is the size of a middle schooler’s, and his limbs are as skinny as a toddler’s. He gets around with a motorized wheelchair.
Burcaw’s appearance causes strangers to make all sorts of assumptions about his age and abilities. On outings with Aylward, dads have invited him to play with bubbles, and liquor store clerks have proffered lollipops. Strangers often assume Aylward is Burcaw’s mom or his nurse. They think that he can’t speak or that he’s cognitively disabled.
In fact, he’s a 27-year-old author of three books, public speaker, co-founder of a nonprofit and, most recently, a successful vlogger.
A little over a year ago, Burcaw and Aylward started posting videos online about their “interabled” relationship (two people of differing physical abilities) as “Squirmy and Grubs” (their pet names for one another) and quickly amassed nearly half a million subscribers, placing them among Minnesota’s most popular YouTubers.
Fans call them “hysterical” and “adorable,” commenting that they are “beautiful people inside and out” and “the coolest couple on the planet.” They send numerous gifts. One fan even flew from India to meet them.
But trolls accuse Aylward of being “mentally deranged” and a “gold-digger,” describe Burcaw’s appearance in terms too cruel to be repeated and have made videos purporting to “debunk” their relationship as fake.
And everyone has questions about their sex life.
The curiosity, bias and misconceptions that people with disabilities face – strangers infantilize them, pity them or assume others don’t find them attractive – spurred the couple to broadcast their lives. So far, their vlog has raised awareness about disabilities and caregiving as well as helping to normalize their experience. It’s also become a full-time job.
Laughing at his nightmare
Burcaw was a cute, if complacent, baby. At 9 months, while his peers began to crawl, Baby Shane sat contentedly wherever he’d been plopped.
He was given the devastating diagnosis of spinal muscular atrophy, or SMA, a form of muscular dystrophy that causes muscle to deteriorate. The disease is exceedingly rare and, depending on its severity, can lead to premature death due to respiratory complications.
Growing up with SMA meant that he relied on his parents or brother to help him with everyday physical activities, such as getting in and out of bed, dressing and brushing his teeth. By middle school, after years of trying to hide or minimize his differences, Burcaw realized that the burden of making others feel comfortable about his condition ultimately remained his. So he tried easing the tension by candidly addressing the awkwardness head-on, cracking sarcastic jokes about his wheelchair and his body, such as, “My parents don’t feed me because they wanted a kid who could walk.”
In college (Burcaw chose a school just a few minutes from home, so he could live with his parents), he started a blog that offered a humorous approach to living with a very serious disease. “Laughing at My Nightmare,” he called it. Making fun of his situation was the only way a guy whose muscles barely worked (if his head inadvertently tips back, Burcaw doesn’t have the neck strength to right it) could cope.
By the time he graduated, his blog had developed a large following, which he leveraged to start a nonprofit organization to speak at schools and provide adaptive and medical equipment for people with muscular dystrophy. A publishing house bought his memoir.
The book, also titled “Laughing at My Nightmare,” possesses as much depth as humor. Burcaw recounts multiple disability-related antics and mishaps – such as the time he tied a rope to his wheelchair and hoisted his brother into their basketball hoop – alongside brutally honest reflections on his life. “My physique has been twisted and bent by my disease, like a plastic action figure melting in a fireplace, so from an early age, people have treated me like a rolling tragedy,” he wrote.
In 2013, former Guthrie and “The Office” actor Rainn Wilson produced a short documentary about Burcaw, who comes off as equal parts wry (“All of my muscles are extremely weak – except for my penis,” he quips) and contemplative (“I don’t use humor to avoid thinking about the bad stuff in life, I use it to make the bad stuff less bad”).
In the video, Burcaw’s father, Jon, gives a stirring tribute to his son. “He has the capacity to make friends and to understand people and institute change. It’s an incredible thing for a kid his age, let alone with his disability.”
A thousand miles from Pennsylvania, a student at Carleton College in Northfield came across Wilson’s documentary one spring evening in 2016. The video piqued Aylward’s curiosity enough that she looked up Burcaw’s blog. After several hours of reading, she emailed him.
She complimented his sense of humor, referenced common interests and made fun of herself for being a creepy internet stranger. She made no reference to his disability, and concluded: “P.S. I think you’re cute.”
An internet romance ensued. “An ungodly amount” of FaceTime, as Burcaw put it, led the couple to say “I love you” before they’d even met in person. Soon they were making frequent visits to see each other. About a year into their relationship, after a monthlong road trip, Burcaw decided to join Aylward in Northfield. Soon afterward, his parents handed off the role of being their son’s primary caregiver.
Aylward’s mom, Liz, who was admittedly “extremely disturbed” by the idea of her daughter meeting a guy online, warmed up to Burcaw as soon as they video-chatted, and says she could immediately see why Hannah was enamored of him. Liz has since opened her home to the couple and traveled internationally with them multiple times, getting a firsthand look at how Hannah seamlessly assumed Burcaw’s caregiving responsibilities.
“I’ve never seen her complain about it or get tired of it,” Liz said.
The young couple say that one of the biggest misconceptions people have about their relationship is that the care is a burden on Aylward. Both insist that’s not the case, that Aylward’s assisting Burcaw with, say, eating or bathing is just another way of hanging out.
After they moved in together, Aylward would get Burcaw ready in the morning, then set him up with his laptop and a snack so he could work on his book or nonprofit for a few hours while she was at swim practice or classes. If she wanted to spend an evening with her friends, Aylward would cut the night a little short to get Burcaw into bed, or arrange for someone else to drop by and help.
“Situations like that are the kind of thing that people think about when they ignorantly comment that I’m holding Hannah back in life,” Burcaw said. “But she was able to have a totally healthy social life.”
In fact, they say his physical limitations helped them forge a deep connection quickly. “Because of my disability I’m forced to show vulnerability right away and our relationship is that much more intimate from the get-go,” he wrote in his 2019 book, “Strangers Think My Girlfriend Is My Nurse.”
In June of 2018, the couple posted their first video on YouTube to share a few highlights from a road trip. When Burcaw linked the video to his blog, it got several thousand views.
The couple soon realized the platform’s potential and started posting more regularly. Last winter, an interview on a popular YouTube channel featuring kids with disabilities brought them 100,000 new subscribers in a week. Viewers learn about how difficult it is for Burcaw to travel on airplanes and the couple’s plans to have kids. They share their favorite cuddle positions and the story behind their matching battery-symbol tattoos.
The primary focus of “Squirmy and Grubs” is to offer a glimpse of the couple’s daily life. Watching an interabled couple do laundry and drive a car – in this case, Aylward physically doing the tasks while Burcaw provides emotional support – is about as exciting as watching two able-bodied people do those tasks, which is to say not very.
But that’s kind of the point. Aside from Hannah picking Shane up out of his wheelchair and wiping his nose, the videos aren’t so different from what any other millennial couple might film. As Burcaw put it in a video interview: “Our relationship is normal, and exciting, and she helps me poop, but otherwise we’re just a regular couple who has fun, and gets into arguments, and figures out life together.”
The internet responds
Internet reactions have not always been polite. “The very first message from our vlog was from a guy named Chad who asked if he could pay us for a video of us making love,” Aylward said with a laugh. But they’ve managed to convert a few of their trolls.
“Some people who have left really mean comments have come back a few weeks later and commented again, apologizing and saying they’ve watched the videos and they realized they were wrong,” she added.
Mostly they get plaudits and gifts from uberfans who admire their work (a very different exchange than when pitying strangers hand Burcaw cash, unsolicited).
Arik Hanson, an independent social media marketer who teaches at the University of St. Thomas, said that the uniqueness of the couple’s story has helped fuel the vlog’s quick rise.
Even though the disability community is relatively small, its stories are largely underrepresented in the media.
“If you think about influencers, there are a ton of food influencers and there are a ton of motivational people,” he said. “It’s harder to cut through now, which is why they’re popular. They are way different from anything you see on the internet.”
And yet their story’s universal elements – of pursuing romance and overcoming adversity – lend it a timeless appeal.
Since the vlog was launched, the couple’s narrative arc has been on a steady upward climb. A newly FDA-approved drug has slowed the progression of Burcaw’s disease, the two got engaged, and they started earning enough from their social media presence to make disability advocacy a joint career.
They are living with Aylward’s parents in Minneapolis as they look for an apartment, plan their wedding and work on a book of interviews with interabled couples from around the country. They plan to speak this fall to occupational therapy students at Ohio State University and elementary school kids in Park City, Utah. And, of course, they’re always creating the next episode of “Squirmy and Grubs,” as well as keeping up with the machinations of running a successful YouTube channel.
While they’ve become more adept at playing YouTube’s numbers game – often racking up 100,000 views and 1,000 comments the same day a video is posted – the couple say they get the most satisfaction from inspiring others to help make the world more accepting of, and accessible to, people with disabilities.
“And I don’t have a number for that,” Burcaw said.