Shane Burcaw has hundreds of thousands of followers on his blog. He’s written three books and cofounded a successful nonprofit. But that doesn’t stop waitstaff from assuming his girlfriend is going to order his food for him.
“The crap I get in society has happened to me my whole life,” Shane told INSIDER, so he’s pretty much gotten used to it.
Shane and Hannah Aylward, his new fiancée, are an interabled couple: Shane has a condition called spinal muscular atrophy, a type of muscular dystrophy that means his muscles are incredibly weak, while Hannah is able-bodied. Patients with this fatal disease typically do not live beyond adolescence or young adulthood. His body grows weaker every year and one day the illness will claim it.
This tends to mean strangers assume that Hannah is Shane’s nurse and that he can’t think or speak for himself. In public, this means he’s often handed children’s menus and laughed at when he asks for a beer.
To fight the illusion that people with disabilities aren’t functioning members of society, Shane and Hannah make videos on their YouTube channel, Squirmy and Grubs, which has more than 571,000 subscribers.
“Squirmy and Grubs are our nicknames for each other,” Hannah said. “We’ve had them since really early on in our relationship. I’m Squirmy — Shane called me that because I squirm around in bed a lot when I’m sleeping. I just move a lot, and that annoys him.”
“That’s an understatement,” said Shane, nicknamed Grubs because of his “sweaty-hand problem.”
Shane and Hannah’s story: ‘She helps me lift my beer to my mouth — but it doesn’t take away from the love’
Shane and Hannah started making videos because they thought it would be a fun hobby to document their lives. Plus, Shane already had hundreds of thousands of followers on his blog, Laughing at My Nightmare, which is also the name of his first book of autobiographical essays. So he figured people were curious enough to watch.
But when the channel started growing beyond what they ever thought it would, Shane and Hannah had to think more about what they wanted people to take away from their videos.
“It really became normalizing our kind of relationship and showing that people with disabilities can have happy, successful lives,” Hannah said.
We’re more focused in our message nowadays,” Shane added. “We want to make sure we’re giving off a good message about disability.”
Hannah is Shane’s primary caregiver, meaning she helps him get up in the morning and to bed at night, as well as helping with things in between like washing, eating and drinking, and using the bathroom. Shane’s condition means he can’t do these things himself.
But other than the extra help, they’re like any other couple — and that’s what they hope people see in their videos.
“There are a lot of stigmas and misunderstandings of disability in our society, and a lot of that comes from a lack of experience with it,” Shane said. “We do things a little bit differently — like she helps me lift my beer to my mouth — but it doesn’t take away from the love and the adventure and the excitement of our life.”
One particular area of curiosity is what goes on in their bedroom. Shane said this is probably because a lot of people assume that having a disability means there’s no possibility of intimacy.
Shane and Hannah don’t talk explicitly about their sex life too much on their channel, as it’s nobody else’s business. But in Q&As and in Shane’s books, it’s clear that sex is as important to their relationship as anyone else’s.
“People comment and say, ‘I could never do that, because I need a sex life,’ stuff like that,” Hannah said. “People think that when you have a disability you can’t have sex or don’t want to or whatever.”
In Shane’s book “Strangers Assume My Girlfriend Is My Nurse,” he talks about the ways they get around the obstacles of sex to find a way that’s effective and enjoyable for them. Quite simply, they “make it work.”
The Squirmy and Grubs channel is predominantly a positive place, with thousands of people commenting on how much they enjoy watching Shane and Hannah’s daily lives. But they also experience some hate and negativity, the curse of the public eye.
They said they receive messages from people who say their relationship is fake and who can’t comprehend the idea of caregiving and intimacy existing in the same universe.
“We would have to be tricking our entire families,” Hannah said, alluding to one of the weirder conspiracy theories about her choosing to be with Shane: that his family is on the Forbes list.
“People also use the fact that I’ve written about previous girlfriends as, like, evidence that all of this is fake,” Shane said. “As if I’ve been planning it. Like I’m going to hire a series of women to pretend to be with me, then I’m going to move to Minnesota and live with one of them, then propose to her.”
Shane said that he struggled with a burden complex for most of his life but that with Hannah he no longer feels as if caring for him will scare her away. He said that in the beginning he overapologized for needing her help, but after three years of Hannah being “amazingly reassuring,” he’s let the complex go.
“People in my life before had been like, ‘Don’t worry, this isn’t bothering me,’ and it never really felt like the truth,” Shane said. “But with Hannah it did. And I feel much more comfortable with my disability in the three years that I’ve known Hannah, and I owe a lot of that to her.”
So rather than letting the negativity in the comments get them down, Shane and Hannah use it as motivation to continue to challenge the ignorance.
“All those comments say is that there are still uninformed people out there, and so that’s more reason for us to help them,” Shane said.
Shane is estimated to be worth $1-$5 million.
Cole and Charisma’s story:
Being a man is not about your body and what you can do physically — it’s a lot more than that’
Cole Sydnor and Charisma Jamison are also spreading the story of their interabled relationship with their YouTube channel, Roll with Cole & Charisma, which has about 294,000 subscribers.
Cole jumped into Virginia’s James River in 2011, shattering his vertebrae and severing his spinal cord. This resulted in quadriplegia, meaning he is paralyzed from the chest down and doesn’t have any function in his fingers. So while Cole can move his arms and get around by himself in his wheelchair, Charisma is also his caregiver.
Like Shane, Cole shows people how he lives his life, going on adventures and trying things he didn’t do even before his injury.
“I think people also assume that because I have a disability everything is, like, exponentially more difficult and that we’re not able to do a ton of things,” Cole told INSIDER. “There may be a degree of truth to that, but the bottom line is we’re able to do almost everything we want to do, and it’s not too much more difficult.”
It just takes a bit more planning, he said, “but it doesn’t detract from the quality of our lives at all.”
One of the best parts of sharing their lives is the messages they get from others, especially young people who have had a spinal cord injury, Cole said. Many have said that before watching Cole and Charisma’s videos they feared that dating was too difficult and finding love was impossible.
“Because they had watched our videos and seen the love in our relationship and what we have for each other, they were motivated or inspired to go out and put themselves out there again and knew that one day they’ll be able to find someone themselves,” Cole said. “I mean, that’s beautiful. That’s what you want to see.”
Cole struggled with these feelings after his injury, which happened when he was only 16. He said he didn’t date for a long time because he didn’t have the confidence that he would be attractive to somebody.
It wasn’t something that I focused on and just wasn’t something that I prioritized,” he said. “So in that sense, I just kind of repressed it, and I didn’t feel like I was missing out on anything.”
Cole said that before his injury, all he did was “chase after girls.” But he lost that after the accident, possibly because a lot of a teenage boy’s masculinity is tied up in athleticism and physique.
“When you have a spinal cord injury, both of those things are rapidly lost, and so in a sense you feel like your masculinity is as well,” he said. “When you grow up a little bit, you mature some, and you realize being a man is not about your body and what you can do physically — it’s a lot more than that.”
He finally reached that point shortly before he met Charisma, he said, and was “able to gain that confidence back to go and find a beautiful woman.”
Cole and Charisma want to spread as much positivity as they can, but that doesn’t make them immune to strangers’ assumptions about them.
People either say, ‘Oh, Charisma, you have such a big heart, you’re such an angel,’ but I don’t have a bigger heart than anyone else because I decided to be with Cole,” Charisma said. “He’s a person first, and I see him as a man, not as a wheelchair. It’s just a really weird comment to me.”
Cole met Charisma when she was working in Virginia at the Sheltering Arms center, which treats people who need rehabilitation after spinal cord injuries and strokes. Charisma believes this helped her understand Cole’s injury better, but with everything else she wanted to know, she simply asked him. Communication is vital, as it is for every couple.
With interabled relationships, it’s much more likely that a breakdown in honesty and trust, rather than the extra work of caregiving, will signal the end.
No relationship is perfect, and interabled couples also experience tough times, though their challenges are more likely to include problems with finding somewhere accessible to live, worries about insurance costs, and some extra planning.
Cole and Charisma are estimated to be worth $137,000