lightreads

Eternal Darkness

3/5. Account of the history of deep-sea exploration, before turning to the author’s career which includes the discovery of the Titanic’s wreckage, among other things. Way more interested in things than people. He’d be like, ‘let me tell you how this capsule worked that people went half a mile down underwater in,’ and I’d be like ‘okay, but tell me about the maniacs who volunteered for this, because they sound more interesting.’ You can also tell that he is breezing past huge personal slapfights that convulsed the entire field, and on the one hand, he’s not grinding axes, how refreshing. On the other, it’s a bit bloodless.

Interesting stuff, though.
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Early: An Intimate History of Premature Birth and What it Teaches Us About Being Human

4/5. What it says on the tin. An upsetting, fascinating look at prematurity and its prevalence, history, socioeconomic and racial components, and consequences. The prologue is the story of the author's daughter, born at less than two pounds (she survived), what her treatment was like, what it felt like to hold a baby that small against your chest, when even breathing too vigorously on them could decompensate their nervous system. It's a lot. I confused Casterbrook, who I was nursing when I picked up this book, by sniffling onto his fuzzy head.

Because, well, okay. This is a very good book, and I recommend it. But for me, it was (not consciously until later) a sort of purgative. Other people's birth/pregnancy trauma helped me work through some of mine. It's like trauma calisthenics, and it worked, reading this book off and on for a few days, generally while nursing my healthy, thriving full-term one year-old who wouldn't be here today if the cards had landed a little differently. I didn't have a premie (though landing in L&D at 32 weeks is no fun, even when you're 80% sure you're okay) but somehow reading about other people's early births and the ways their babies survived or didn't helped me revisit ( pregnancy loss, contemplation of late abortion, pregnancy complications ).

Anyway. It's a good book. Also, unrelatedly, by a food writer whose recipes at the NYT I like. Casterbrook is, in fact, a pretty big fan of this soup.

Content notes: Um. Babies die in this book. Not all of them, though. Not even most of them, that's the point. Also, babies receive a lot of medical care, some of it pretty horrific.

Reading Lolita in Tehran: A Memoir in Books

4/5. Memoir of a woman literature professor chased out of formal teaching in Iran after the revolution who held private seminars in her home for seven female students to read banned western books.

This makes a haunting companion to Persian Mirrors: both portraits of Iran written by women, one an American, one a secular Iranian. The smothering force of the regimes restrictions on women is far more urgent and present in this book, to the point where I found it stressful to read. And she has to be so careful in what she says about who – most of the identities in this book are obscured. But she also has such a love of literature, and such a beautiful way of framing her life in the themes of books, that she almost made me care about Fitzgerald, etc.

Like a Mother: A Feminist Journey through the Science and Culture of Pregnancy

3/5. This was a rec from someone at NPR and, uh, oh boy yes it sure was a rec from a person at NPR. I kid with love. Anyway, this is about 60% pregnancy/miscarriage/birth/post-partum memoir written by a woman of color, 20% "science," and 20% cultural commentary from a feminist and sort of intersectional perspective (I don't actually give anyone's intersectionality credit when it doesn't include disabled people, and hers doesn't seem to). I came for the science, and ended up enjoying the memoir. I've read a lot of miscarriage and birth stories, and a good writer – which she is – can make something you've heard a thousand times real again. This turned out to be good, because the science parts of this book are supposed to be the things that women just don't know about their bodies, and, uh, I already did? Maybe it's the circles I move in, but these "revelations" about the prevalence of untreated pelvic injury and the specific mechanisms of immune support via breast milk are not news to me. She's not wrong that they should be more widely understood, though, and in general I'm in favor of this movement towards science-based pregnancy and birth practices (though in the case of this book, underpinned with an amount of woo about trusting women's bodies that I wasn't quite ready for).

Basically, it's an NPR rec book.

Between the World and Me

5/5. Part autobiography, part cultural essay, part history, part intimate family letter.

I am not going to do this justice today (I am sick. Again. Again). So straight out, this is the most extraordinary book I've read in a while. It is a letter to his son, and walks that line of intimacy while also acknowledging the performativity of, you know, being a published book. It is a memoir of coming to intellectual and racial consciousness, and a study of white-on-black violence, and a distillation of several years of his thinking, as will be familiar to his regular readers. I read this very purposefully not trying to analogize it. Like a lot of people, my experience of other kinds of oppression has made it easier to start getting my head around racial oppression, but that only gets you so far and at a certain point, you've got to stop drawing lines and start confronting the thing as it is. I passed that point a while ago, though I didn't realize it in a timely fashion.

So I deliberately read this while working to read it as just itself: a book about race. A book, very specifically, about the violence in racism, the purposeful and systematic destruction of black bodies.* Which worked until it didn't, until about three quarters of the way through when he told a story of responding with sudden, unexpected rage to a white woman's microaggression. And it was just – that moment when you get so angry, and you know, you know your anger will do nothing, that the people around you will do anything to not hear you, and you know your anger is actually counterproductive because of that, because they have made it counterproductive for you to be anything other than silent and accepting, and that just makes you madder, and you are just a tiny cog in the bigger machine that is eating people, this microaggression is one of millions and it doesn't fucking matter, except it's also everything.

Yeah, I don't know, I couldn't just read this book as about race then. Which is a disservice to it. But also why it is so good.

Anyway. Yeah. Read it.

P.s. The audiobook is read by the author, and in my opinion, that adds a great deal to the text.

*There is an argument to be made that racism – the program of destruction of the black body (by police, prisons, poverty) – can be analogized to ablism – the program of destruction of the disabled body (by doctors, institutionalization, and poverty). Go find a news article about a parent killing their disabled child. Go on, they're very easy to find. It happens all the time. Go see if the parent got convicted of murder, let alone even charged. Go read the justifications. Take the temperature of the article. Come away with that sense, unspoken but clear, that it wasn't really murder, that you can kind of understand, how much pressure that parent must have been under, how awful for everyone. Go on, I'll wait. Thus are lives discounted. So yeah, the analogy can be made, and has been I'm sure, by better scholars than I. But I'm realizing more and more that it's of limited help. Violence may be violence, but context is not context is not context.

...

And there's the last book by a man I'll be reading for a year. Hell of a way to go out, too.

The Midwife: A Memoir of Birth, Joy, and Hard Times by Jennifer Worth

My rating: 4 of 5 stars


Late-life memoir recalling the author's youth as a midwife in London's East End in the 1950's.

Picked up for the from-the-trenches view of birth (not that much has changed in 60 years when what you're talking about is midwife-assisted, largely unmedicated delivery). Kept for the other 70%, which turned out to be a rich, compelling, complicated, sometimes uncomfortable personal/social history. And for Worth herself, who was smart, and driven, and talented, occasionally racist, and often struggling to find compassion. This is a memoir of someone who was powerfully compelled into exhausting, difficult work that challenged her social comfort zones for reasons she never fully understood, and that resonated with me. As did her explicit recounting of her repeated struggle to see the person under the most abject degradations of poverty. The book is not so well-observed when it comes to ethnocentrism and, in a few startling instances, gendered violence, but there is something about the strength of Worth's writing that makes it all go down as a capsule, her strength and her charm and her painful blind spots.

I want to watch the TV show now.




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Past Due: A Story of Disability, Pregnancy, and Birth by Anne Finger

My rating: 4 of 5 stars


A lovely memoir of Finger's pregnancy interspersed with recollections of coming into her political identity as a disabled person. How her political activism worked with and against her personal activism of being a disabled woman having a child.

This book was hugely helpful to me in processing things it has nothing to do with. This book was about Finger's planned home birth, and how it went so terrifyingly wrong, and her son's first six months, and the way she had to reconcile her political beliefs with how she viscerally responded to the possibility that her child would be disabled. And I read it, and I thought about the conversation where my sister was talking in a restrained, wistful way about how she still wasn't pregnant, and how even if she could be, there was a pretty big question about whether she could ever safely carry to term. And without thinking even for a second, without stopping at all, I blurted, "I'll carry for you." And I have wondered in some astonishment ever since, through everything (carrying someone else's baby is not as easy as they made it look on Friends, shockingly), why I said it. Not regretting, just -- why? I'm a self-centered career woman with a hugely draining and important job, and I didn't know it back when we first talked, but I was about to go through a couple years of unrelated low-grade personal hell. Dedicating my body and my time and my hopes and my care for months and months to make another person's dream happen is not something I should have volunteered for like that, in that instant of course way. But there it was.

And this book really helped me figure it out. I won't go into the whole damn thing because really, this box is not that big. And also, this book deserves better than my tangent, because it is rich and interesting and very cool in its own right. It's a little sad how much it isn't dated -- there's a weird bit where Finger comments on how new ultrasonography is as a technology, and is it really safe to use on pregnant women? But then nearly every other political moment in the book was painfully real and true. Like when she stood up at an abortion rights meeting and said, "yes, I am with you, I support this cause, but don't you think the way this movement talks about how important it is to abort fetuses with disabilities is really problematic?" And the viciousness and hostility she was met with….yeah. There's nothing dated about that.

Anyway. I highly recommend to many of the mothers of my acquaintance who have thought about their ownership of their bodies in relation to motherhood, or who have considered motherhood to be a political act for whatever reason, or who have looked at their baby and thought, what if you are disabled?

Random pull quotes that helped me in my thinking:

"But I think too that we do our best work politically when we do the work that really tears at us."

"People who aren't disabled never seem less than human to me. But they sometimes seem to be missing a dimension, glib and easy, skimmers over the surface of life, not quite as real."

When I was pregnant I used to get so sick of people saying, "you won't care if it's a boy or a girl, as long as it's healthy." So sick of the assumption that health was all that mattered. But I sometimes used to say, "I don't care if it's healthy or not as long as it's a girl." It's not a joke I would make again.

Health, physical well-being does matter. It's my own internalized oppression that makes me fear having a disabled child, but it's not just that. It's the knowledge that being non-disabled is easier than being disabled. … But to admit that disability and illness are hard doesn't mean that they are wholly negative experiences, meaningless.

I had a child because I wanted something perfect to come out of me. I got just the opposite of what I thought I wanted. I don't believe in God or any version of God, any hand of fate or karma that was out to teach me a lesson. But my child's potential disability did teach me that I don't own my child, he's not an extension of me, not there to reflect me, not there to heal my past.

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Why I Burned My Book and Other Essays on Disability by Paul K. Longmore

My rating: 4 of 5 stars


Three and a half years ago, before I started law school, I applied to receive services from my state’s vocational rehabilitation agency. VR will sometimes pay the adaptive technology expenses of students with disabilities so it can be financially feasible to pursue higher education. At a very conservative estimate, the access tech I use for school purposes costs upwards of $10,000, and that’s not counting the potential expense of services (such as a live reader in the library if I can’t get electronic access to something in time) which can run from $10 to $40/hour, depending on the complexity and specialty required.



I’d been through the VR rodeo before in a different state for undergrad, so I was kind of prepared. My first meeting with my case manager went something like this:



Oh, wow, you have a doggie – that must be so nice for you to have a friend! Let’s just fill out these forms – tell me every gory detail of your medical history going back twenty-three years. Yes, of course including all test results, experimental surgeries, and anything else not remotely relevant to your educational prospects. Now, do you have a parole officer, because they’ll have to discuss my case. No? Well! Are you sure you want to go back to school? You have a job, after all, why do you want to leave it? [Desire for betterment and career planning not being things that disabled people do, apparently:]. And law school, do you know how hard that’s going to be? Have you really thought about this? Lots of people drop out, you know – lots of people just like you. [The secret code, I assume you guys can crack it:]. Are you sure you don’t have a parole officer?



And then we got into my school of choice, a top-tier, nationally recognized institution I was already accepted to. Why was I going there? Why wasn’t I going to the small local school that had regained (regained, not earned!) its accreditation so recently, it wasn’t even ranked? Did I know that if I went there, VR might consider paying the tiny tuition? How did I know nationally-recognized school was a better school -- I’d just moved here!



I politely suggested that they pay tiny local school’s tuition rates to my school, which was a drop-in-the-bucket, but something, but what I really needed was technology support, so could we talk about that?



It was at that point that there was a stamp put on my file. I don’t know if it was metaphorical or actual, but either way it said something like “noncompliant.” Or maybe “difficult.” Or quite possibly, “uppity.” I never saw a penny of tuition assistance, which I was fully expecting, but neither did I get one scrap of access tech support. And I didn't throw the screaming fit that might or might not have changed that, because I was kind of busy at the time kicking ass and taking names in law school, and racking up debt like no one's business.



This book is about that. That scenario specifically, which is incredibly common (something much like it happened to the author, actually), and the context of institutionalized patronization and controlling ablism built in to our systems, particularly governmental aid programs. Longmore, a historian, first makes the case for why disability historiography is important, then demonstrates how it’s done with a focus on disability efforts to reform government programs starting in the Great Depression. There’s a really disturbing detour in the middle of the book into healthcare policy and euthanasia of people with disabilities, and then we turn back to government aid.



The titular essay, “Why I burned My Book” is this amazing example of combining personal narrative and political advocacy. Longmore burned his book, his very first, outside a government building in 1998. He’d worked on it for ten years, but the government program that paid for the ventilator that kept him alive was going to remove its support as soon as he published – which he had to do, being an academic – because the royalties would count as income. He could either work, or he could stay alive.



This is a powerful introductory book. It’s a collection of essays and speeches written over time, but it’s surprisingly cohesive. I’d recommend it for anyone wanting an accessible background in the social model of disability and a few of the bigger issues that still concern the movement today. This isn’t a book about pervasive interpersonal bias, it’s a book about how that bias gets incorporated into institutional structures from the ground up, and how changing it is almost impossible.





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Truth & Beauty: A Friendship by Ann Patchett


My rating: 3 of 5 stars
Okay, I'm gonna come out and say something earnest here, in a short break from the usual foul-mouthed cynicism. I think books ought to have courage; I think memoirs, out of all books, must have courage. And this one doesn't.

This is supposed to be the story of a twenty-year friendship between two women writers, but in reality this is just a book about Lucy Grealy, the girl who lost most of her face to cancer, the eventual darling of the New York literary scene, the heroin addict. The cowardice starts there, letting this book be about Lucy, who is dead, about how larger than life and brilliant and fucked up she was, because that way Patchett never really has to tell us much more than the executive summary of herself. But it doesn't stop there. This is a book about a really long, complicated friendship, where one party clearly had serious psychological problems (Borderline Personality Disorder, at least based on this narration – seriously, you can go down a freaking checklist). It's hard to explain what I'm pointing at when I say this book lacks courage. It talks about Lucy's neediness, her clinginess, her bursts of demanding infantilism, but it's in this weird, belligerent way that says, see, I'm telling you all this to show you just how much I must have loved her. Not I loved her, so I can tell these stories now that she's gone to grieve and remember and be truthful.

Like, for example, there are a half dozen pieces of evidence scattered throughout the book that Lucy was a . . . let's say fabulist. In parts of her nonfiction, and in parts of her life. And Patchett just tosses this stuff out there and doesn't touch it, not once. I don't want to piece together evidence from a friendship/memoir/fragmented biography – I want the evidence, and I want Patchett's thoughts on it, I wanted honesty about this part of Lucy, too, along with how she submitted herself again and again to abusive surgeries. I don't want diamond clarity – that's a weird thing to want from a memoir – but I do want . . . more real participation. Reflections on Lucy that reflect Patchett, too. Something that wasn't an entire book of an apology. Something braver, because you know the most summary, cursory part of this book? The few flat lines at the end, after Lucy overdoses. This is a book all about Patchett's grief, and yet, at the last, she hides her face.

Courage. Not something easily found in grief, but I have high expectations.

Still. Lucy's excerpted letters were beautiful.

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The Unabridged Journals of Sylvia Plath by Sylvia Plath, edited by Karen Kuril

This just in: Sylvia Plath's journals? kind of a downer.

Also disorganized, vast, incredibly rich. I enjoyed the early college years the most, when she's all casually fantastic writing and cycling ecstasy and alienation. The later stuff is heavier with self-consciousness and deeply frustrating relationships with men. She's one of those people that I would be friends with and love dearly, but every year or so I would lose it and snap "oh just fucking deal with it," at her.

But man could she write. Worth it just for a week of deep, oceanic reading, coming from nowhere and going everywhere.