“Brilliant Imperfection: Grappling with Cure,” by Eli Clare, is not the quick read I thought it would be. Instead, it was a book that challenged me, inspired me, and offered a painfully personal, unique view into a life full of conflict, desire, and strength.
Eli Clare visited Buffalo, NY in February 2017 to discuss his book, life and work. Inspired by his story, a group of students gathered to read and discuss “Brilliant Imperfection: Grappling with Cure.” I was fortunate enough to help lead and participate in this discussion.
As an advocate of Universal Design, I’m always interested in hearing the stories of those who most benefit from this idea and learning more about their lives and how I can interact with them in more positive, empowering ways.
Clare covers a lot of -isms and intersections in his work. As a transgender man born with cerebral palsy, he understands on a visceral level what it’s like for others to be uncomfortable with what you are - and to sometimes be uncomfortable with it yourself. He’s spent his whole life contemplating the idea of being “cured.” It’s a difficult duality for many of us to understand - wanting to be cured, but not wanting to be cured. Wanting to be cured because society tells you that’s what you should want, and not wanting to be cured because you’re the only one who knows what you might lose in the process.
“Brilliant Imperfection” is a robust, complex, heart-wrenching memoir that forces readers to truly consider the idea that medical advancement is not always wholly positive - that in an unending quest for a cure, we force humans to give up pieces of themselves, leave potential unrealized, and change the fiber of who they will become. The dichotomy becomes what’s potentially gained from a cure. Clare realizes that he’s alive today only because of advanced medical intervention. What and who could he become with a cure? What would it be like to be like “everyone else?”
For Clare, these are not simply philosophical ponderings. They’re his reality, each and every day. In a society that has a very clear picture of what a “normal” human looks like, acts like, and wants, it’s difficult to be born “different.”
What “Brilliant Imperfection: Grappling with Cure” isn’t is an answer guide. In fact, our discussion group left with more questions than answers. But it does open up the conversation. It challenges you to think about how often you may have made assumptions about what people want, or how often you’ve found yourself grappling with the same complex dichotomy.
If you’re interested in reading this book for yourself, or want a more in-depth breakdown of each chapter of Brilliant Imperfection, visit the link below to read the study guide we used in discussion of this book.