I struggle with the genre, but the overall thrust of the thing was really very good and very moving. A meditation on why not to be cynical. Why not, no matter your situation, not to waste yourself in anger and resentment on a pointless need for fairness. Some times the blue sky is all you get and in that moment it is enough, enough to “unself” you (as Iris Murdoch put it). We have a responsibility as mothers to widen the aperture of our beings. I knew this from the start with Marco. His birth did not only produce an awesome love in me for him, but for all babies. It was a widening of my heart’s aperture. That’s what this book is about.

A brilliant deeply insightful book, and one I am not sure how to categorize or describe. In simplest terms this is a memoir I suppose. Chloe Cooper-Jones, a philosophy professor and writer (covering everything from the murder of Eric Garner to the perfection of Roger Federer) was born without a sacrum. This spinal agenesis left her with lifelong pain and short stature. In some ways this book is a memoir of growing up with this unusual and highly visible disability, but really that is a starting point, and if the reader comes to this wanting a linear memoir of disability they are going to be surprised at what they find here. A more accurate description would probably say this is a book about living a life that is built around how others see you, being in reactive mode all the time, showing them why you are better to draw attention away from the ways in which you are "worse." And this is a book about changing that narrative, about growing to understand the ways that living in response to others limits you and finding ways to turn that around by seeing that people's reactions to you are about them, not about you at all. Even that lengthy and circuitous description is rather reductive, but it is the best I can do.

Cooper Jones begins her book with a scene in a Brooklyn bar with two fellow philosophy doctoral students, both of whom discuss at length their clinical depression before launching into a philosophical discussion of her right to exist during which no one asks for her input. Eventually one of those grad students argues passionately in favor of eugenics. This event triggers a good deal of searching around the world for answers to questions about belonging and worth and the nature of "easy beauty" and "difficult beauty" (not in that order.) By the time this quest starts Cooper Jones has a tenure track position at a New York college, she is married to a man who is so wise and loving I defy any reader not to fall in love with him, and is the mother of a very bright and delightfully odd child though she had been told by doctors she would be unable to have children because of her disability. She is a "success" and her life is as she wants it, but she still lives in a way that brings no happiness, where every day she is consciously and unconsciously focused on proving her worth, really her right to exist, given her disability. She feels the responsibility to be extraordinary in all other respects to make up for her being physically "deficient."

The book is a combination of memoir, philosophical tract, and social commentary. Cooper Jones is sort of a less pretentious and self-conscious Maggie Nelson (as if one could imagine a more pretentions and self conscious Maggie Nelson.) Cooper Jones learns a great deal about the joy of belonging, about how those of us who protect ourselves this way lose by setting ourselves apart to avoid being rejected. She also learns a lot about love. There is a scene late in the book where she asks her husband about how he has dealt with her always leaving and running from place to place for answers. She asks him why he did not tell her she needed to stay. In response he tells her he could not do that, he could only work to be the man she would want to come home to. That moment brings together so many of the lessons of Cooper Jones' journey. The whole is so smart and fascinating and human and wise and beautifully written. A must read for all humans. ( )

For book club. Read to page 119. See also: Disability Visibility.

Quotes

My disability is obvious, but its details are unclear; to look at me is to feel information both shown and withheld. (11)

I have a hunger to be elsewhere and otherwise. (18)

It is a deft act of erasure to be told how to process a situation by a person who would never experience it. (25)

...[the] same receptors that were open to beauty were as open to suffering. (34)

The field of bioethics is grounded in four principles: respect for an individual's autonomy; a fair and just distribution of resources; beneficence, which is the commitment to assuaging suffering; and non-maleficence, which is the promise to do no harm. (60)

"He saw the world through the lens of himself." (83)

"But if you are aware of these external, negative forces influencing your behavior, you could think about them and learn to adjust your behavior." (94)

But I'm not helpless, I'm struggling. People don't always recognize the difference. (97)

Exquisite prose examines parenthood, philosophy, how normate bigotry shapes disabled lives, travel as “education”, and a score of beautiful things. ( )

I liked the second half much more than the first, and I am not sure if it is because it took me that long to get into Jones's writing style, or if the second half truly had a different feel. ( )