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A review by karaayers
A Face for Picasso: Coming of Age with Crouzon Syndrome by Ariel Henley
5.0
This is one of those books I'm so grateful it was written and I had the chance to read it. After only about 25 pgs in, I sent my mom a copy. She's an art teacher and I knew she'd enjoy sharing the journey of reading this intersection of growing up with a disability with an overlaying analysis of art (most focused on Picasso).
Henley's writing is magnificent. The feelings she evokes-even in a memoir-are deep and real. I felt her anger, frustration, and at times hopelessness with our cruel world. As I listened to her description of facing anesthesia as a child, I found my heart pounding and realized I was holding my breath-just as I did no matter how hard I tried not to as I also went under anesthesia multiple times as a child. I also resonated with her hard-to-explain descriptors of subtle but painful exclusion from certain aspects of growing up or peer acceptance. There's this experience-before you even have words for it-where people will discuss things, like marrying someday or having children someday, and they awkwardly pass over you in these discussions. Sometimes the intention is kindness. They don't know examples of disabled adults who embody these roles and often we, as the disabled kids, don't either. There aren't easy answers or solutions to many of the complex situations Henley faced. As she said, her parents did the best they could in making hard medical decisions for/with her. I hope Henley also deeply knows that she also did the best she could. Her vulnerability and courage to share her own darker moments are admirable. I sometimes wondered if she was a harsher critic of herself than others who had caused her such pain.
While I'm sure I related deeply to this book because of our shared coming of age as visibly disabled women, I wish everyone would read this book. I couldn't agree more with Emily Ladau's review that THIS is the book our world, our children need-more so than Wonder, which de-centers the disabled character and mostly exists to make nondisabled people feel good. I hope Henley follows with another memoir about her later adulthood. She's a powerful storyteller and I can't wait to see where she goes from here.
Henley's writing is magnificent. The feelings she evokes-even in a memoir-are deep and real. I felt her anger, frustration, and at times hopelessness with our cruel world. As I listened to her description of facing anesthesia as a child, I found my heart pounding and realized I was holding my breath-just as I did no matter how hard I tried not to as I also went under anesthesia multiple times as a child. I also resonated with her hard-to-explain descriptors of subtle but painful exclusion from certain aspects of growing up or peer acceptance. There's this experience-before you even have words for it-where people will discuss things, like marrying someday or having children someday, and they awkwardly pass over you in these discussions. Sometimes the intention is kindness. They don't know examples of disabled adults who embody these roles and often we, as the disabled kids, don't either. There aren't easy answers or solutions to many of the complex situations Henley faced. As she said, her parents did the best they could in making hard medical decisions for/with her. I hope Henley also deeply knows that she also did the best she could. Her vulnerability and courage to share her own darker moments are admirable. I sometimes wondered if she was a harsher critic of herself than others who had caused her such pain.
While I'm sure I related deeply to this book because of our shared coming of age as visibly disabled women, I wish everyone would read this book. I couldn't agree more with Emily Ladau's review that THIS is the book our world, our children need-more so than Wonder, which de-centers the disabled character and mostly exists to make nondisabled people feel good. I hope Henley follows with another memoir about her later adulthood. She's a powerful storyteller and I can't wait to see where she goes from here.