Maria Sweeney offers candid glimpses of living with a disability in her graphic memoir Brittle Joints (Street Noise, June).
You open up so vulnerably in this book about living with Bruck syndrome. What made you decide to dive into that?
I think it is a personality trait: you’re either going to put your heart on your sleeve through your art, or not. Bruck syndrome is so rare—but there are other people with it. When I was adopted, we knew I had some disabilities, but it wasn’t until I was about 12 or 13 that we really got an accurate diagnosis.
I also wanted to help clear the road for other disabled people. It makes it real to see it in media. It shows we have beautiful lives, and with an accurate diagnosis, we can have better lives.
Why tell the story in vignettes?
I was reading a lot of underground Philly zines, and I like the work of Ozu, a Japanese director, who used a lot of short vignettes. But trauma makes it much easier for me to break up the things that have happened. Crafting a story about my life has to be compartmentalized—I can structure a vignette, then take it away.
How did creating this book help you reflect on your experience with pain?
Because it’s a brittle bone disease, the pain is constant and the fractures don’t always heal. When other people break their femur, it’s treated very seriously. I have concurrent fractures, my disease is ongoing, so you sort of have to pretend the breaks don’t matter because if you really thought about it, it’d be
too much. But I’ve been in a stable enough position to say to myself, “your pain matters.” I was able to access pain relief, physical therapy, and mental health therapy, which makes the experience of pain very real.
Water, plants, and the natural environment are motifs. What does nature mean to you?
Growing up in the New Jersey Pine Barrens, I was always
surrounded by nature. Nature gives us everything we need, and being in water has so much healing for me. Cannabis has also helped me sustain myself, without more addictive medication, through a lot of my daily pain. When I use it, it just goes right to my joints. It’s a very functional experience.
What role does ableism play in your life?
Most disabled people live in unique housing and employment situations. There’s no support system set up for families with disabled children. I’ve had to deal with ableism at every stage of my life. I’ve had to put my body at risk just to do normal things—and that really weighs on you. When I wrote this book, I wanted to educate, and yell out my anger. My disabled community focuses on person-centered support: they might not have the answers, but they want to help you in ways that actually support you.
