A Face for Picasso: Coming of Age with Crouzon Syndrome | 
pickHighly recommend this memoir by young author Ariel Henley on her experiences growing up with Crouzon syndrome. She and her twin sister were both born with the condition, which inhibits the expansion of the skull during childhood growth. What followed were dozens of surgeries, first to medically correct the issue and then for years to reform facial features to achieve society‘s standard of symmetry/beauty. With every memory or observation, Henley🔽
LiteraryinPA (Cont‘d) raises issues of what beauty is, what art is, pain, complex trauma, maintaining your identity when you wake up from surgery and don‘t recognize yourself, etc. I feel like I‘m stumbling over the words, but I thought this was a great book. 2y
psalva I learned about this from the collection Disability Visibility. I‘m so glad to hear more about it and that it‘s worth tracking down! 2y
LiteraryinPA I also appreciated that she didn‘t oversimplify things. She was in pain, but she also sometimes hurt others with her words or actions. Her relationship with her twin sister is very nuanced. She sometimes wanted to be invisible while also wanting to advocate for her worth and the worth of others like her. She‘s no one thing. But she IS a really good writer and I‘m glad I learned about her life through her storytelling. 2y
LiteraryinPA @psalva I read that too and that might be where I heard of this one! I think it‘s definitely worth reading. 2y
