Shane Burcaw, 27, and Hannah Aylward, 23, are on their way to New York for a reading of Burcaw’s latest book, Strangers Assume My Girlfriend Is My Nurse. Aylward cradles Burcaw in her arms on its cover. In the car, Burcaw drives while Aylward navigates, pausing our conversation only once to inform her of a last-minute lane change.
Ever since their “Squirmy and Grubs” YouTube channel blew up back in January, only a few months after its launch, things have been unprecedentedly busy for the Minnesota-based couple. “Squirmy and Grubs” features short videos that highlight their interabled relationship with a sense of humor. One recent travelogue is entitled “Tall Woman Carries Tiny, Tiny Fiancé Onto Plane.” Another is called “Riding My Fiancé” and features Aylward riding in a wagon attached to Burcaw’s wheelchair.
To that end, Aylward is an able-bodied person while Burcaw experiences extreme muscle weakness as part of his spinal muscular atrophy. As a child, the condition was progressive, which meant that he’d get weaker as he got older, but now there are a few treatments available to stop that progression. “I can’t move my arms and legs very well, but everything else works pretty much normally,” Burcaw explains.
Speaking of normal, Burcaw wants you to see him as exactly that. “We have this idea that people with disabilities aren’t successful, they aren’t happy, they aren’t contributing members of society. But that’s not true. We need a lot more stories of people with disabilities doing normal things — whatever that means,” he tells me. “I wrote a children’s book to show kids that even though I can’t walk and have to do some things a little differently, I still go to school, have friends, hang out with my family and everything else able-bodied people do. So you can treat me as you would anyone else.”
He’s currently working on another book, this time in collaboration with Aylward. For it, they’re interviewing other interabled couples from around the world, people of all sorts of races and sexualities with different types of disabilities and relationships. Their goal is to show how diverse and strong interabled relationships can be.
In the meantime, of course, he’s promoting Strangers Assume My Girlfriend Is My Nurse. And so, during that aforementioned car-ride to NYC, I spoke to Burcaw about how he’s able to find humor in everything he’s been through, his and Hannah’s meet-cute and the one question about their relationship they refuse to answer (at least for public consumption).
Your blog, “Laughing at My Nightmare,” launched your writing career, and eventually became the name of your non-profit organization. Where does that phrase come from?
It was a tongue-in-cheek way of describing how I tended to laugh during difficult moments, or to make fun of them. When I first began writing, I saw my life and my position as someone with a disability in a much more negative way. I laughed about it and made light of it in order to help myself cope. I wanted other people to feel like they could relax about it, too. The name was just a silly way of describing all of that.
I built up this audience with the blog, and I felt like there was potential with all these people to do something, like for the world. That’s how Laughing at My Nightmare became an organization that provides medical and adaptive equipment to other people with muscular dystrophy. We also provide disability awareness programs for schools where I talk about the stuff that’s in my books. I try to show people that living with a disability is a positive and normal thing.
Your Squirmy and Grubs YouTube channel seems to have caused all of this to really blow up even more. Did you and Hannah have any specific goals in mind when you posted your first video?
None. Hannah and I both had interest in filmmaking but not a lot of experience. We began the channel just for fun, to mess around with it. We did, though, want to show people the humor and normalness of our relationship. I’d say as the channel grew, we thought a lot more about our message and designed our platforms to be a positive voice for disability and interabled relationships.
How did you and Hannah meet?
Hannah saw a documentary about me. Afterward, she read some of my blog and connected with my interests, my sense of humor and thought I was very, very handsome [laughs]. Anyway, she emailed me, and we struck up a conversation. She was living in Minnesota and I was living in Pennsylvania so we began with a long-distance relationship. We did that for about two years, with lots of visits during that time. After that, we both knew that we were going to be doing this forever. We were ready to make it more permanent, and so I moved to Minneapolis to live with her. And life has been amazing ever since.
Were you worried about Hannah stepping into certain caretaking roles?
I wasn’t. Hannah had been learning all of my care for the previous two years, and she’s the best caregiver I’ve ever had. It’s weird to rank them, I guess, but I wasn’t worried. My parents knew that she was more than capable of doing everything I need. We had a conversation about it, of course, but they were very supportive of the idea.
The caregiving activities that we do in the day are a lot more minimal than people might imagine. I need maybe 20 minutes of help in the morning and then maybe half an hour throughout the rest of the day and night. Doing those activities is very natural for us; they seamlessly fall into our day. It never felt like this big thing that we had to figure out.
Obviously, we talk about it and check in with each other about how we’re feeling — “Is there anything we need to adapt?” and that sort of thing. But the caregiving thing is a very positive part of our relationship.
As a kid, did you expect to enter an interabled relationship when you grew up?
I hoped for it, but as a kid, I didn’t think about it a whole lot. Society pumped into me the idea that as someone living with a disability I wasn’t really a valuable partner. On some level, I definitely internalized that idea and saw myself as not very valuable. It wasn’t until later that I realized how damaging that idea was and could begin looking at myself in a healthier way.
How much did social expectations of masculinity influence that?
A ton. We have these really old ideas about what a man needs to be in the relationship. He has to be physically protective and do all the manual labor. It’s all, in my opinion, silly. But as a young person I didn’t have that awareness that it was silly. I just thought, Well, I can’t hold her hand the normal way so I must not be valuable.
Can you take me through how that thinking changed over time?
Honestly, that’s something that Hannah is still helping me with. I don’t know how to phrase this, but I’m not completely done with my journey of self-acceptance yet. Hannah, though, is definitely doing wonders in that sense. And I hope that the videos we make together and the book that we’re working on will help other people with disabilities think about their romantic lives in healthier ways.
It seems like so much of your work is dependent on extreme transparency. Was there ever a time where you preferred to hide aspects of your disability?
I wouldn’t say that I hid it in any conscious way, but until I began my blog, I didn’t really have a platform to talk about anything like this. It started with the blog, then the books and now our YouTube channel. It was definitely a process to feel okay sharing things with everyone.
That said, there are still things we keep private. It’s tough putting everything out there, but at the same time, that’s what makes our story authentic, which is very important. Disability is a taboo thing because people don’t feel comfortable exploring their curiosity about it. And when they do, it often comes out in an offensive way. I hope that our videos and my writing helps people feel like that information is more accessible to them.
Your children’s book is called Not So Different: What You Really Want to Ask, but I’m sure people of all ages approach you with questions. Which ones about your body do you receive the most?
The question we get most often on YouTube is, “How do you have sex?” Or: “Do you have sex?” The world has a weird fascination with that, but it’s one of the areas that we draw the line at. We’ve been open about the fact that we’re intimate and we’re happy with our intimate life, but we don’t feel like it’s something we’re comfortable going into more detail than that.
Let’s turn back then to the love side of the ledger. You and Hannah just got engaged. How did you go about planning the big proposal?
The biggest thing was that Hannah doesn’t like being in the spotlight, which might surprise you because we have a YouTube channel. But she’s a very private person. I knew that she wouldn’t want a grand gesture in front of other people, and so, I made a moment that was deliberately only between us but where right afterward we were able to celebrate with family because family is an important part of our lives and I knew that she would want to have that moment with them — just not in the limelight.
We were at my brother’s wedding yesterday. They probably shouldn’t hear this, but it gave us a lot of ideas of what we wanted and didn’t want for our wedding. We want a very simple, intimate wedding with our closest family. Beyond that, the most important thing to us is the food. Whatever the menu is, that’s all we really care about.