Invisible disabilities can be a uniquely frustrating experience. That's not just because of the part where you're forced to exist in a world that hasn't been designed with your specific needs in mind. It's also because the rest of the world sees you and just assumes that you fit within their status quo expectations of what "normal" should be, and then get mad at you when you don't quite conform to those expectations.
This is the emotional core of Brittle Joints, a new graphic novel memoir by Maria Sweeney — an artist living with Bruck syndome.
Here's the official blurb:
When Maria Sweeney was young, she kept count of her broken bones. As she grew older, she stopped. Living with Bruck syndrome, a rare progressive condition that gives her very brittle bones and joint abnormalities, meant that those numbers climbed and climbed.
Today, she struggles every day, living in an often-inaccessible world. As an ambulatory wheelchair user, ordinary actions like entering a building, sitting at a café, or holding a cup of tea can be drastically different for her than for others.
With lush illustrations, Maria tells the story of her lifelong struggle to obtain care in an increasingly complicated and disinterested US healthcare system. But for every step that presents a struggle, there's also beauty, friendship, art, and growth. A powerfully understated critique of our modern world.
Sweeney's stunning artwork truly transforms her story into something intimately profound. Whether its the exhaustion of dating without exposing your disability, or the bureaucratic nightmare of dealing with pharmaceuticals and doctors, Sweeney hones in on the most harrowing moments of a life spent navigating the treacherous trails of basic human existence in modern America.
That's not to say it's all bleakness, though. Sweeney's sweet vignettes also focus on her relationships with lovers and friends—those who understand her needs, and actively try to accommodate those needs at every opportunity. Strangers might pass their cruel and unfair judgements on Sweeney when they see her standing after using a wheelchair. But her friends understand that, well, she only has a limited amount of energy to expend while also coping with the constant pain that plagues her bones—so yes, she can walk perfectly well, but sometimes she also needs assistance.
And that's fine. It's normal. And it's really not that hard to accommodate.
This book particularly resonated with me as someone with ADHD. I don't necessarily think that my neurodivergent brain is directly comparable to Sweeney's chronic pain. But I am all too familiar with the constant struggle of having to navigate both your own ends, and the expectations of others. All those disappointments—every time you fuck up, or inconvenience someone else, just because you weren't built quite like everybody else—and you see those judgmental eyes looking down on you. It wears on you over time. All too often, people see you in these difficult moments, and instead of thinking, "How can I help?", they think, "Well that person seemed fine the last time I saw them, so obviously this is just an excuse and they're full of shit," because they can't understand the amount of energy that you spend just trying to exist in the world. Sometimes your loved ones don't even understand, and that hurts even more (though, as Sweeney's book shows, there's a wonderful kind of love that blooms when you find the ones who do get it).
Sweeney deftly illustrates these experiences throughout Brittle Joints. I wish more people were exposed to these kinds of intimate, personal stories about normal people living with things like this. Maybe that would help them understand more.
Brittle Joints [Maria Sweeney / Street Noise Books]
