Read This Book . . .

[CW: ableism, eugenics, attempted suicide]

As a disabled person who loves books, I’m always looking for more stories about other disabled people and the lives they lead. But sometimes these books can be hard to find, and even when I CAN find them, they aren’t available in a format I can read. As part of my condition, I can’t read print books, but not every book is available as an audiobook. So when a friend volunteered to read this book to me, I gave a hearty, “Yes, please!”

The White Bathing Hut is about a Norwegian man who has a disease where his muscles deteriorate over time. When the doctor first diagnoses him at fifteen, he’s not sure that he wants to keep living. But he decides to hang on and discovers that life still has so many beautiful things left to offer. Over the years, he learns that his illness is genetic, but no one in his father’s family has the condition. When he asks his mother, she refuses to acknowledge the extent of his condition, let alone discuss her family’s medical history.

With The White Bathing Hut, Steen also comments on Norway’s history with eugenics. And while they denounce any practice of that now, the novel’s protagonist deals with constant ableism that’s still very much part of his modern experience as a person with a genetically inherited disability.

This is one of those books that found me at just the right time. As someone with more than one genetic disability, I’m all too aware of America’s love of eugenics and who may or may not have “the best quality of life.” But there is a lot of wisdom and encouragement in this novel. Steen shares the same genetic condition as his protagonist, and in a trailer for an upcoming documentary on his life, Steen describes his own mental health spiral after his diagnosis. But he goes on to say, “I’m glad I gave life a chance.”