Five Book Friday
by Annabel J., August 26, 2022 8:39 AM
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My hope was simple in curating Writing the Body: to hold up exceptional writing that interrogates — empirically, literarily, lyrically — the fundamentally simple experience of living in a human body, especially as that body intersects with (chronic) illness; race, gender, and queerness; disability; the American “Medical-Industrial Complex”; environmental destruction; and design and the built environment.
You will notice that the five titles I’ve selected here — and that the vast majority in the larger display — are the works of self-identified women: people, in other words, who have not long had, for one reason or a constellation of them, the privilege of narrating their own experiences of living, ailing, and changing.
To be sure, this becomes less true every day; I would argue that the very most exciting literary pursuits are emerging from the fold of (creative) nonfiction — more: at the hands of women.
Much of that work grapples with the unique challenges of being a flesh form in the 21st century: among them, the exponential rise of autoimmunity in recent decades (fueled, in part, by zealous over-prescription of antibiotics); environmental toxicity; the living ghosts of racism and sexism in Western medicine; the enduring difficulties of possessing female biology under patriarchy; the simultaneous expansion and erosion of gender; and the unbridled march of technology (a realm dominated by men).
It goes without saying, Writing the Body is far from exhaustive; the display is an introduction, rather, to a wider, impossibly verdant body of work. The five writers I’ve chosen here — fine prose artists, heroic reporters — are exemplary of that body. Collectively, they pose some of our time's most pressing questions: ours to contend with, to live, in the years ahead.
The Lady’s Handbook for Her Mysterious Illness
by Sarah Ramey
I started thinking about Writing the Body when — mid-pandemic, perusing Bainbridge Island's Eagle Harbor Book Company, my home bookstore — I encountered Sarah Ramey’s The Lady’s Handbook for Her Mysterious Illness. "Mysterious illnesses” is code for autoimmune disorders (fibromyalgia, multiple sclerosis, Hashimoto’s, chronic fatigue syndrome, Lyme, lupus, among others): a suite of conditions dramatically on the rise. The National Institutes of Health reports, and Ramey underscores: 75% of all autoimmune patients are female.
Ramey’s is an unparalleled resource for those living with chronic illness — from the early, difficult days of (mis)diagnosis to treatment and management. Ramey chronicles her own illness: the inexpressibly difficult, circuitous route to her eventual diagnosis; the disbelieving, unfeeling doctors (many of them quick to dismiss her symptoms as psychological); the pitfalls and strengths of both Western and alternative medicines (including a damaging philosophy Ramey tried for a time to adopt, blaming “negativity” for illness); the obliterated hopes and incremental gains. It is, as promised, a handbook — complete with a spectacular bibliography — as practical as it is personal: everything she wishes she’d known from the beginning. I couldn’t have expected it, but Ramey's is the most hopeful book I’ve ever read.
Unwell Women: Misdiagnosis and Myth in a Man-Made World
by Elinor Cleghorn
Unwell Women was published in 2021, but I encountered it in June 2022, just as Roe v. Wade was overturned — something Cleghorn foresaw unambiguously.
I don’t know that I’ve ever learned so much from any one book (not least, that a post-Roe world was the next logical step in a series of abuses aimed at the "second sex"). No historian, to my mind, has more fully captured Western medicine’s incalculably destructive relationship with women — especially women of color — from the witch trials of Europe and colonial New England (the symptoms of menopause being, by the way, eerily similar to the “symptoms” of dark magic) to the days of hysteria (that lingering, catch-all diagnosis) to the autoimmunity age (something Cleghorn knows intimately, as someone who lives with lupus).
We need look only to the recent past, Cleghorn reminds, for examples of gross injustice: the eugenicist inclinations of Margaret Sanger, founder of Planned Parenthood (a troubling history with which the organization has repeatedly had to reckon); the undisclosed clinical testing of the first birth control pill on Puerto Rican women, along with mass sterilizations conducted there, in the 1950s and ’60s; the historical lack of women participants in clinical drug trials (on account of their “unruly,” skewing hormones) and, as a result, the development of drugs catering primarily to male physiology; the disproportionately high maternal mortality rates of Black American women (more than double that of their white counterparts); the gaps in knowledge, research, and funding when it comes to “women’s” disorders, like endometriosis and autoimmunity.
The Observer said it finally and best: Unwell Women is “not just a compelling investigation, but an essential one.”
Invisible Women: Data Bias in a World Designed for Men
by Caroline Criado Perez
Caroline Criado Perez’s clarion call is the “data gap,” a “female-shaped ‘absent-presence’”: that is, researchers’ frequent failure to sort data by gender, or to collect data pertaining specifically to women, and thus the failure to craft inclusive policy (or to design equitable cities, spaces, products, and so forth). These gaps riddle nearly every conceivable corner of human life, the indexing of which propels Invisible Women. Everything, it seems, from city planning to public transit; cancer-causing household cleaners to unseen, unpaid domestic work; military gear (designed for the male figure) to pianos (built for male hands); tax laws to the academic tenure-track model. These gaps, Criado Perez explains, can be relatively innocuous: “Shivering in offices set to male temperature norms…or struggling to reach a top shelf set at a male height norm.” They can also be deadly: “crashing in a car whose safety measures don’t account for women’s measurements,” or dying of a heart attack because very real (albeit female-specific) symptoms are dismissed. To say Invisible Women is executed with surgical precision doesn’t quite cut it — so masterful is Criado Perez’s accumulation and narrativization of studies and figures, she sucks all the air out of doubt. And all of this with the graceful detachment of a seasoned litigator.
Disfigured: On Fairy Tales, Disability, and Making Space
by Amanda Leduc
Disfigured marries Leduc's medical and personal history as a woman with cerebral palsy with the critical theories of folklore and disability. She dissects the fairytales of Western tradition: moralized stories that have long championed straight white ability while equating disability with defectiveness, punishment, and evil; stories we absorbed intravenously, blindly as children.
Leduc, who used walking aids as a child, never encountered a princess who navigated her world with crutches, or, heaven forbid, in a wheelchair. Instead, she found her likeness in villains (scarred, hunched, asymmetric) and pitiable heroes — the eponymous Maiden with Severed Hands, for example, or the lovable and bowed Quasimodo of The Hunchback of Notre Dame — who, upon fulfilling their quest, are almost always rewarded with able bodies and beauty, and subsequently with marriage and material gains. (She points out that Quasimodo — one of the few disabled heroes for whom bodily transformation does not transpire — does not find romantic love, only a motley crew of friends who accept him as he is.) In the tales, as in life, Leduc says, the onus has historically been on the individual to change — not the society that pathologizes and ostracizes difference. Seen at a different angle, the “happily ever after” of the fairytale is little more than the lukewarm maintenance of the status quo.
Leduc underscores the power of storytelling in reinforcing cultural conventions and nationalist narratives, and describes how a culture’s literary imagination becomes projected onto the material world: she repeats throughout, stories are never just stories. The Nazis, like the Grimms, for example, “believed in the freshness and the power and the purity of the German countryside,” she writes, “as opposed to the cities, places…where all kinds of unsavoury characters — and races — might mingle.” She draws a parallel with schizophrenia, a culturally informed phenomenon:
[D]elusions in patients treated in the 1970s and 1980s often centered on Russian spies, while patients who came into the Emergency Psychiatry ward where I worked in the early 2010s often talked of ISIS sending them messages through the computer.
Leduc is a luminous writer and thinker, and her Disfigured represents the very best of what autotheory (a vogue genre that considers lived experience through the prisms of philosophical-theoretical discourse) can be.
A Terrible Thing to Waste: Environmental Racism and Its Assault on the American Mind
by Harriet A. Washington
As a nation, we are cellularly unwell: something we all well know by now, but perhaps not to what extent.
Nothing is rotting America from the inside out like the triptych of systemic racism, corporate greed, and its legacy of environmental destruction: a trinity that’s long done its worst work in minority neighborhoods and on tribal lands.
Medical ethicist and Harvard Medical School affiliate Harriet A. Washington examines some of America's most chemically devastated landscapes, tracing the ways in which environmental toxins — to which populations of color are disproportionately exposed — harm the human brain (especially in utero and in childhood), and how over time that harm degrades the intellectual life of a community.
Lead is the most devastating of these neurotoxins, which Washington illustrates by way of the inner city of Baltimore, where great swaths of low-income housing (occupied primarily by families of color) still bear, despite city mandates, lead-based paint. She describes how perilously easy it is for young children (the group at highest risk) to ingest paint flakes, given their hand-mouth pipeline, proximity to the floor, and the metal’s enticing sweetness. The "same sweet taste,” in fact, that prompted the Romans “to infuse their gastronomic delicacies and wine with lead, courting the mental devastation that some historians believe hastened the civilization’s decline.” The organic damage wrought by lead poisoning is virtually endless — not least because childhood exposure “produces epigenetic changes," then transmitted between generations. As Detroit-based pediatrician Mona Hanna-Attisha said, “If you were going to put something in a population to keep them down for generations, it would be lead.”
Washington visits, elsewhere, the majority-Black neighborhoods of Anniston, Alabama, home for many years to the Swann Chemical Company and later the infamous PCB manufacturer Monsanto, now one of the most heavily contaminated towns in the country. Most residents suffer any combination of cancers, autoimmunity, mobility ailments, learning disorders, behavioral problems — and almost all know their blood-PCB level. A potent photograph shows longtime Anniston resident and environmentalist David Barker standing over his brother's grave, who died at 16 from lung cancer, atherosclerosis (stiffening of the arteries), and a brain tumor. Some areas, Washington explains, "have no zoning laws to protect residents from sharing their space and air with toxic effluents,” and that “other municipalities, especially but hardly limited to poor Southern towns and cities,” like Anniston, “accept these undesirable industries because they want the jobs and the tax base they bring with them.” It’s hardly surprising that Monsanto well knew, court documents later revealed, of the environmental and human ruin in was inflicting, “dumping millions of pounds of PCBs into Anniston for four decades.”
The scope and depth of Washington's project can only be called magisterial, far beyond what I have the ability to represent here. No book better chronicles the body under late-stage racial capitalism: that is, our very American moment.
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Explore the rest of Annabel J.’s Writing the Body display.
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