Nearly a decade ago, back when platforms like Tumblr still ruled the internet, I stumbled upon a popular blog called “Laughing at My Nightmare.” Thus began one of my first parasocial relationships.
The blog was written by Shane Burcaw, a motivational speaker and manager of his own nonprofit who has spinal muscular atrophy — a disease that significantly weakens his muscles and requires him to use a power wheelchair. It was raw, hilarious and unfiltered, but between the toilet jokes and sarcastic armor, he often got vulnerable.
“Mentally and emotionally, I am more than capable of being in a relationship, and that is the problem,” he once wrote. “In my mind, I want to believe that I will eventually find someone, but I realize the chances are slim to none.”
I was in my 20s at the time, like Shane, and also had a lifelong physical disability, bilateral vocal cord paralysis. I wore a tracheostomy tube to help me breathe. And, like Shane, I often wondered whether I would ever find a partner who loved all of me — including, not in spite of, my disability.
Little did I know, I’d already met a history major who loved to quote Shakespeare and would eventually become my husband. And in 2016, Shane received an email from a nondisabled woman named Hannah Aylward, who had watched a short documentary about his life and had a gut feeling they’d get along.
They married in September 2020.
The Burcaws are now well known for their YouTube channel, Squirmy and Grubs, where they have documented their relationship for six years. They have more than four million followers across social media and share a passion for disability advocacy and a bone-dry humor. Even through the tough stuff.
Every day, the couple receives comments from strangers who scrutinize their marriage, with some demanding to know if (and how) they have sex and whether Shane pays Hannah to be with him. They’re not the only ones: Many “interabled” couples experience similar disbelief and even ridicule.
Shane, now 32, and Hannah, 29, joined me on a video call at the end of last year from their home in Los Angeles, where they spend their winters. (In the warmer months, they live in Minneapolis.)
I asked them about misconceptions around disability and dating; the romantic side of caregiving; and their new essay collection, “Interabled: True Stories About Love and Disability,” which features poignant vignettes of couples like them.
This interview has been edited and condensed.
Let’s talk about the term “interabled.” I know some people like to use it, but others take issue with it because the line between being disabled and not isn’t cut and dry. What are your thoughts?
Hannah: We’ve heard from some disabled people that they don’t want that title because disability isn’t that important to them — like, it doesn’t define their relationship. We feel that it’s the easiest way to talk about a set of experiences that you really don’t have unless you’re in this kind of relationship.
Shane: Even couples in the book, they don’t all use the term for themselves. However, either one or both identify as disabled. So that, in our definition, makes them interabled.
You receive a lot of hurtful comments online from people who question how you could be a real couple. How do you take care of yourselves and each other when that happens?
Shane: Hannah takes it more personally than I do. Throughout my entire life, I’ve dealt with the knowledge that people have weird assumptions about disability and they think lowly of me. So I’ve developed a thicker skin to just be like, “Welp, you’re wrong, so I don’t care what you say.”
Hannah: When am I going to get my thicker skin?
Shane: Whenever we do get confronted with stuff like that, we support each other by writing replies together. We’ll craft witty or snarky replies. I think I have more fun than Hannah does.
You’ve met other interabled couples through developing your essay collection. What has that been like?
Shane: When we put up the submission form for people to apply to be included in the book, we were hoping for a handful. In 24 hours, we had over 600 submissions. Getting to know them was amazing, hearing their stories and how much we had in common.
Are there any particular passages from the collection that you especially love?
Hannah: Lexi and Eric, one of the couples we interviewed, met as little kids in elementary school and grew up as best friends, and then at a certain point just transitioned to being a couple without much fanfare. They’ve been together for decades at this point. Their story is one of my favorites, just the adventures they’ve gone on. He pushes her wheelchair up a mountain because he wants her to see the view. It’s a really sweet love story.
Can you talk about how you define caregiving, and how that shows up in your relationship?
Hannah: People often assume that caregiving has to be separated from the romantic part of our lives, so they’ll be like, “How do you draw the line between being a caregiver and being a wife?” It’s definitely embedded in the romantic love. Caregiving is very seamlessly integrated into our day. There’s no line that we draw.
Shane: When we’re cuddling in bed, that’s a romantic thing. But I might need to say to Hannah, “Hey, can you slide my leg to the left?” That’s caregiving. But there’s no line there. It’s interwoven. When Hannah is helping me cut up my food and eat my dinner, that’s caregiving, but we’re also chatting and telling stories and making each other laugh.
Hannah: Caregiving is inherently intimate, and that just makes you closer.
Did those dynamics naturally develop as you were dating, and when you moved in together in 2018?
Hannah: We were long distance for two years, and I would visit almost every month. When I was visiting, I would be Shane’s caregiver so that we could spend time alone and we weren’t bringing his dad along on a date.
Shane: Sorry, Dad.
Hannah: I learned everything very gradually during those first few months of visits, so by the time we moved in together, it did feel extremely natural.
Shane: I didn’t want to just, on Day 1, be like, All right, here are 100 caregiving items you need to learn right now.
We’ve talked about ways that Hannah “caregives.” What are some ways, Hannah, that you feel like Shane takes care of you?
Hannah: Shane is a great emotional caregiver. He’s a wonderful husband, knows exactly what to do when I’m upset to make me feel better. My favorite trait about him is his sense of humor. And then also, he manages everything for our household. You know, like — what do you do, Shane? Like bills.
Shane: She doesn’t even know! That’s how much I handle.
The post The Remarkable Normalcy of Being Disabled and in Love appeared first on New York Times.
