My beautiful girlfriend, Hannah, and I have been in a relationship for about three years now. These have been the three happiest years of my life so far — full of travel, cheesy romanticism and an unexpected rise into the public eye as we began sharing our relationship on YouTube.
The increasing popularity of our channel, “Squirmy and Grubs,” came with a decent amount of misunderstanding from our viewers. Many people have never seen a relationship like ours before, where one individual lives with a physical disability and the other does not. Our goal in sharing our lives with the world is to help normalize interabled relationships, to show people that our love is just as exciting, fulfilling and real as any other.
With that goal in mind, here are six things we want you to know about our relationship:
1. We are a couple!
This one feels quite obvious, but you’d be shocked by how often strangers assume that Hannah is my nurse, my mom, my sister or my babysitter. Because of the widespread and deeply-ingrained misconceptions about disability, people tend to see me as a child, or as someone who could not possibly be involved in a romantic relationship. Hannah and I were once checking out at a liquor store when the cashier said to Hannah: “Does this big guy want a lollipop?”
I spoke up and said, “Nope, just the beer. Thank you, sir.” I bet if Hannah and I had then shared a passionate kiss, his brain would’ve exploded.
2. We are not unique.
Hannah and I are not special. As our YouTube channel has grown, hundreds, if not thousands of couples in similar situations have reached out to us. It turns out, people with disabilities are in fact still human, with emotional wants and needs like everyone else! We hear from interabled couples every day, and the common theme of these messages is simple, yet profound: “Our relationship feels so normal! Why can’t the rest of the world see that?”
3. We argue.
Just as we experience all the joys of being in love, we also get to enjoy the tougher parts of combining two separate lives into one, like arguing! What should we cook for dinner tonight? What should we watch on Netflix? Why is there no more toilet paper? Who forgot to put it on the shopping list?
These are just some of the silly little issues we find ourselves bickering about. Hannah and I both have very passionate, stubborn personalities, so if I’m in the mood for pizza, and she’s hankering for sushi, you better believe there’s going to be a heated debate. I’m slowly learning the important lesson that my girlfriend is always right, no matter what.
4. We can have children.
Many of our viewers have wrongly assumed that, by being with me, Hannah is signing up for a life of childless celibacy. This idea is far from the truth. We have a satisfying intimate life, and both of us are interested in having children together down the road. Unless Hannah is also a carrier of the genetic traits that cause spinal muscular atrophy (SMA), our children will not have the disease. If she is a carrier, our children will have a 50/50 chance of having SMA. Either way, I cannot wait to pull our kids around in a wagon attached to the back of my wheelchair.
5. We take care of each other.
Hannah helps me with all of my activities of daily living, like getting dressed, using the bathroom and taking a shower. Some interabled couples choose to employ a paid caregiver, but right now, my care is minimal enough that it’s not putting a strain on Hannah. In fact, those caregiving activities are a time when we connect and discuss our days.
Although I can’t wash the dishes or fold the laundry, I contribute to our life in other ways. I manage our finances and our calendars. I schedule appointments and answer business calls and emails. I (usually) remember to put toilet paper on the shopping list when it runs out. We both perform equal physical and emotional duties to support each other.
6. We love to travel.
Flying with an electric wheelchair is not easy, but Hannah helped me design a customized car seat that makes air travel easier. Both of us have a deep passion for exploring the world, and even though our travel requires some extra planning, we’ve relished every opportunity to visit new places together. Traveling is our favorite activity as a couple, and we hope that there will be lots of it in our future!
Shane Burcaw has spinal muscular atrophy and a wicked sense of humor. He runs a blog about his experiences and is the founder of a nonprofit organization dedicated to providing adaptive technology to people living with muscular dystrophy. He is the author of Strangers Assume My Girlfriend Is My Nurse and Laughing at My Nightmare and the award-winning picture book Not So Different. He lives in Minneapolis, Minnesota, with his girlfriend. In June 2019, the couple got engaged!