Health “Benefits” and Violence

A long looonnng long time ago in a galaxy far far faaaar away, I was elected to serve on a committee at a workplace that discussed employee compensation and benefits. I deferred for a year because I didn’t think my health could withstand it. Then I said to myself, Ok, everyone should put in their time, so I went onto the committee. I put in two years of my time, and I thought I would learn something. I also thought I could contribute something, because I have written about health benefits and had enough trouble with them that I understand some of the pulleys and levers.

Screen Shot 2016-05-24 at 11.06.31 AMI knew it would be grueling. What I learned, however, was more than details. I learned that the conversations about health insurance in this country are not meant to be logical. They are often really about blatant control and submerged violence.

The first year was survivable. We negotiated some benefits changes that were difficult, but they were not draconian or arbitrary. We were reasonable, and we practiced the dance that people living in the United States are forced to do: “Yes, because of (Cruelty that Will Not Be Named), we will agree to cut into our own bottom lines for the sake of the well-being of those profiting from healthcare.”

In the second year, we tried to figure out reasonable responses to these escalating costs and to contain them; we asked for a little padding for the handcuffs. Those reasonable solutions were met with a stone wall which revealed a little bit too much of the underlying agenda: this was not even about accumulating money for the very rich and for the stockholders of the for-profit healthcare system. No, this was about power over bodies.

We bent over backwards and forwards (with all the implications intended) to propose ways these cuts might be made a little less painfully, and that was met with a rigid refusal. I do believe that some of the people who were sitting in the room did not necessarily think their orders were reasonable, but their own salaries and benefits and therefore the well-being of their very bodies depending on carrying out those orders.

I understand that healthcare costs are escalating. I am not an idiot, although the subtext of our outrage over cuts was always that shame: You are children. You do not understand the real world. They laughed at us, that bureaucratic head-shaking laugh.

There was a pretend-reasonableness to these discussions, but beneath the charts and the agendas was a violence, and that violence says: the people who are in charge—some of whom you might never actually see face to face, and some of whom loathe you because you oppose their agendas—can do what they want with your bodies.

The idea of employer-sponsored healthcare is the worst thing. The idea that employers who buy our labor and by and large set the terms for much of our waking lives also get control over how we might get access to treatment and pain relief and options for our bodies to function is tyranny.

Every week after the meetings I came away in a fog of depression and exhaustion that took the whole day to lift, and the substance of that depression was the non-reality of this imperative: You want too much. You are crazy as a group to want safety or even to want to do better than you did five years ago because 1) you are educators, and education is not a priority in this country and 2) health insurance has the nation in such an unquestionable stranglehold that it threatens every single person’s economic security except the rich and those with two stable middle-class incomes.

Our individual workplaces are not the source of healthcare madness in this country, of course. The CFOs and CEOs are enacting the cruelty of a privatized for-profit system in which insurance is necessary in order to protect a person’s body from the violence of denial of healthcare, and that violence threatens from every turn.

At one point during this extended adventure, the committee met with the board of trustees, and I contributed and played the game and was reasonable and made points. I took from that meeting a few notes and a fancy metal pen. Afterward I was in bed on and off for five days, emotionally exhausted, sore from chronic conditions that make the issue of healthcare a very serious issue, an issue I cannot turn away from for a second. You say “healthcare” and it is not abstract for me. I need it to function on a daily basis.

I am on a specific healthcare hair-trigger: in not having access to healthcare and having healthcare debt at various points in my life, I go into a rage at the inhumanity of having one’s physical and mental health used as a pawn of control. It makes my heart ache. I am also on a hair trigger regarding the general issue of men making decisions about my body, shaking their heads in condescension, laughing at me, implying that I am a foolish child, and telling me that what I see and know is not real. And then making me say how “lucky” I am to be in this situation when so many others have it worse, forcing me to acknowledge that this is the world we live in, a world where cruelty and denial of care sets the terms for how we live in our bodies.

We all live with this as if there were no other options. There are other options. When you shake your head at me and say, “Oh little girl, you don’t understand the market…” I say, “It’s amazing how many levels of condescension and control are going on here to get into my head and make me feel worthless so I don’t have the energy to fight you.”

And then I quote the Pope, who said on May 7, 2016: “Health is not a consumer good but a universal right, so access to health services cannot be a privilege.” This is the true thing, no matter what layers of shame are wrapped around our bodies. We are mortal and breakable, and that should not be a sin or a shame. That is the glorious fragile human condition.

Check out more of the Pope’s stuff here: http://thinkprogress.org/health/2016/05/19/3779838/pope-francis-health-care-leeches/

 

 

Cover Me: A Health Insurance Memoir

Cover Melowres

Cover Me: A Health Insurance Memoir. Class in America Series, University of Nebraska Press. 2010

ISBN: 978-0-8032-2623-4; 208 pp
Hardcover: $22.95
Kindle (from Amazon): $13

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Finalist for the 2010 Grub Street National Book Prize in Nonfiction

“Wise, irreverent, honest, and utterly compelling. . . . Sonya Huber finds unexpected truth and gentle comedy in every bizarre corner of this insane labyrinth we call our health-care system.”—Dinty W. Moore, author of Between Panic and Desire

“The sheer, jet-propelled energy of this memoir elevates it into a tour de force. I found it by turns hilarious and heartbreaking.”—Sue William Silverman, author of Fearless Confessions: A Writer’s Guide to Memoir

“Timely, passionate, informative, and moving, Sonya Huber’s Cover Me is a scathing memoir of an uninsured young mother’s encounter with health care in America.”—Floyd Skloot, author of In the Shadow of Memory

Press Mentions & Reviews

Thoughtful review by James Nickras in The Ohio Book Review, July 31, 2012: “To me, Cover Me perfectly captures (for some of us) those post-liberal arts degree years where one is trying to find his or her way with different jobs (home for runaway teens, community organizer, journalist, adjunct professor) in different towns (Minneapolis, Boston, Chicago, Columbus) with a series of youthful love interests and motherhood. Each move is a progression to hopefully-something-better to build a future….That is the bare bones of the memoir, dressed in Huber’s anxieties toward maintaining or losing benefits.”

Thank you to Kate Hopper for a beautiful interview and review of Cover Me on her blog Mother Words (Jan. 31, 2011).

Thank you to Sarah Buttenwieser for an excellent review in Brevity Winter 2011 (35)! “Her tenacity, ingenuity, and steady wits awed me. Few people could finesse the system to extract the type of affordable care she obtained. The way she writes about her fighting-for-access drama causes readers to hang on every word.”

“Book Notes” feature on largehearted boy blog, Jan. 14, 2010. David Gutowski: “Sonya Huber’s book Cover Me: A Health Insurance Memoir explores how the lack of affordable medical care affects our lives, and in a broader context, the need for quality and accessible healthcare for all. Huber recounts her own experiences without health insurance with cutting humor and compelling prose in this irreverent yet socially important memoir.”

Jan./Feb. 2011 interview in Against the Current (150): Living and Working Uncovered by Dianne Feeley. Number 22 in Tower Books “Top 100 in Hardback Books” for 100 bestsellers, top-selling authors, and hot new releases, Nov. 21, 2010

Review by Jennifer Niesslein in Brain, Child, Nov./Dec. 2010: “In this memoir—possibly the only book about yearning and the body that doesn’t involve much sex—Huber chronicles her two decades with only intermittent healthcare insurance. Although she’s well-educated, with a background in community organizing and journalism, she belongs to that certain class of Americans: those who, as she once did, have to make decisions like the one to have an otherwise salvageable tooth pulled because it’s the far cheaper option. (‘The middle-class, orthodontized little girl inside me lodged a righteous protest… What about the headgear, the careful brushings, the hooks and rubber bands?’ she writes.) In often lyrical prose, Huber shows how this missing chunk of security informs decisions ranging from the small (stealing a prescription allergy pill from a friend) to the large (can she afford to have a baby?). ‘Worry is a knife,’ Huber writes. ‘You watch the blade. Tensing against that knife-edge takes the attention and focus that might have gone to your family.’”

Interview with Doug Dangler of CSTW at Ohio State University for “Writers Talk,” broadcast on WCBE and WOSU in Columbus, OH, on Nov. 8, 2010.

Review by Lisa Romero in ForeWard Reviews, Nov./Dec. 2010: “Huber’s tale resonates. Who hasn’t encountered obfuscating obstructions in even the best health plan, to say nothing of the millions of un- and underinsured who will read with head nodding (and maybe fist pounding). Amid her many joyless ironies—like working without benefits for a coalition advocating universal healthcare—Huber injects humor and wit, tinged with a humanity clearly honed by experience at every rung of the slippery healthcare ladder. The rest of the story—about love, friendships, motherhood and career—keeps the reader rooting for Huber, hoping she’ll find not just healthcare but a happier, healthier life.”

Review by T. Tamara Weinstein in Elevate Difference (formerly Feminist Review), 9/15/10: “Cover Me is a moving portrait of how access to healthcare determines who is a “have” and who a “have not” and in Huber’s hands, the issues surrounding healthcare reform become clear and relatable. Improbably, given the toll the struggles exact, the author is also very funny, telling her stressful tale with an irrepressible sense of humor.”

Review and author interview by Joan Hanna in Author Exposure, 10/8/10: “Cover Me makes us all a little more willing to share our stories and give a voice to our frustrations. This book isn’t a radical call for change, it doesn’t offer solutions; rather, it begins a much-needed dialogue. Political party battle lines and “what ifs” about medical care dissolve into the idea that medical care and our health are very basic needs that every United States citizen should be able to rely on without stress, frustration, or embarrassment. This book illustrates, in a way that mere political rhetoric cannot, how the lack of accessible, affordable medical care negatively affects everyone on a personal, emotional and economic scale.”

The 17 Most Innovative University Presses and the Books You Will Want From Them,” Anis Shivani, The Huffington Post, 8/21/10

Healthcare in America,” NewPages blog 10/13/10

Growing up in middle-class middle America, Sonya Huber viewed health care as did most of her peers: as an inconvenience or not at all. There were braces and cavities, medications and stitches, the family doctor and the local dentist. Finding herself without health insurance after college graduation, she didn’t worry. It was a temporary problem. Thirteen years and twenty-three jobs later, her view of the matter was quite different. Huber’s irreverent and affecting memoir of navigating the nation’s health-care system brings an awful and necessary dose of reality to the political debates and propaganda surrounding health-care reform. “I look like any other upwardly mobile hipster,” Huber says. “I carry a messenger bag, a few master’s degrees, and a toddler raised on organic milk.” What’s not evident, however, is that she is a veteran of Medicaid and WIC, the federal government’s supplemental nutrition program for women, infants, and children. In Cover Me, Huber tells a story that is at once all too familiar and rarely told: of being pushed to the edge by worry; of the adamant belief that better care was out there; of taking one mind-numbing job after another in pursuit of health insurance, only to find herself scrounging through the trash heap of our nation’s health-care system for tips and tricks that might mean the difference between life and death.

Review of “Hot Cripple”

From Feb. 2012:

I saw a review in Elle (yes I read it for the articles and also for the pictures of purses I can’t afford) for a memoir entitled Hot Cripple. The blurb got my attention, because the family of memoirs advocating for a wider healthcare safety net is very small, and I want to get to know any siblings of Cover Me I can possibly find. So I haven’t read the book. I’m just writing this to process the title. Thanks for being here while I work through the phrase “Hot Cripple” and its relationship to my genre. The author, Hogan Gorman, was maimed in a car accident. She is an actor and has written a one-woman play about her experience. Maybe she called herself “hot cripple” and is reclaiming the word cripple, as some disability activists advocate. But the phrase “hot cripple” (along with the decapitated boob-a-licious lady-body on the book’s cover) seems to make a plea for attention based on a play on stereotypes, and the element of surprise: as in, “Wow, I didn’t realize cripples could be hot. Did you, honey? Let’s buy this book.” I have not studied the incidence of hotness in the cripple vs. non-cripple population, but the title makes me think less of humanity–and the publishing industry–in general, no matter how tongue-in-cheek and hip it’s supposed to be. Okay, BUT. But I’m going to read and buy this book, I think, because I’m interested to see how it’s written, as well as to see whether the content matches the cheese of the cover or is smarter than the cover. I’m interested to see how any author writes memoir in which she tries to messily connect her life story in all its detail to the larger plight of other folks. Memoir is misunderstood in a way that wounds me very slightly–I am much more interested, ultimately, in whether we get universal healthcare than whether this book raises or lowers memoir’s stock with critics. But I’m interested in this genre because it does something hard, and trying something hard and failing often is not necessarily a sign of stupidity or weakness. It’s a sign of trying something hard. BUT in another way, the title here is exactly what is wrong with the memoir image. Memoir does something inherently risky in referring to real life in prosaic terms, a subject area in which the reader (one hopes) also has some authority and experience (This I learned from Dan W. Lehman’s amazing book, Matters of Fact: Reading Nonfiction Over the Edge.) We are at once empowered as readers of memoir to doubt the story world and sanity of a narrator because the narrator is no more an expert at life on the planet than we are–unless the memoir is about an expert relaying his or her expertise, which makes it a memoir of a different (and less risky, more authoritative) sort. Memoirs like “Hot Cripple” place their stock in a paradox. The title seems to state that the narrator’s perspective is worthy of attention because of elements of identity as evaluated by stereotypes and general perceptions. The narrator is posed as an expert on the unsought experience of the “hot cripple.” We didn’t know we were looking for that kind of expertise–in fact, it’s a joke on the reader, because the real pull of a memoir is supposed to be a connection with an individual and complex narrator, a human being whose view on the world connects and maybe overlaps or maybe challenges (or both) the perspectives of other humans regardless of individual life experience. I read memoir to have my sense of humanity challenged and reshaped, to find a sense of communion and also growth or at least non-stasis. Still, there’s a dehumanization in the title that runs too hard against the book’s stated aim of rehumanization. Would you read The Autobiography of Benjamin Franklin if it were titled “Overweight Balding Guy in Teeny Glasses and a Vest”? In that case, of course, Ben Franklin matters because he is a public figure, which gets at the problem of the memoirist who is not a public figure. How, how, how might we bid for our authority? The easy way to sell books is to bid based on humans as surprising confounding products with features that seem mismatched. A Christian Who Drinks! An Accountant Who Pole-Dances! Yawn. Stop yanking my stereotypes and introducing new ones. So we have a marketing problem in memoir, but that doesn’t make me love memoir any less. In fact, I love it more for being a problematic, poorly dressed, half mass-market confusing un-snooty genre with gems and trash and odd birds all mixed together in the same Bargain Book Bin. I wanted to be a personal essayist, I suppose, and I write personal essays sometimes, but ultimately I’m a memoirist at heart. And I care more about universal healthcare than about the whether Neil Genzlinger thinks memoir is cool. So I’ll let you know what’s up with “Hot Cripple” after I read it.
The Review:

I had a few hours yesterday waiting in a doctor’s office (no bitching about that, my endocrinologist is a goddess) and so I got to finish “Hot Cripple” by Hogan Gorman (Penguin, 2012) which promises this story: “An incurable smart-ass takes on the health care system and lives to tell the tale.” How could I not read it? So I did. I love that a book takes on social class and also uses the words “vajayjay” and “funner.” The one teeny issue I have with it is that I don’t think she actually writes much about the healthcare system. But I’ll get to that. And she is forgiven the title “Hot Cripple” because some kid called her that on the street as she was limping by. First I want to say that I’m full of love for Gorman, who I don’t know, because our books appear to be kindred spirits in some way. I like that she took on an issue of social class and told tales that were hard for her to tell and that she made it funny. It’s way funnier than my book, with a consistent deadpan delivery that makes it feel like a one-woman monologue rather than a narrative. This makes sense, since Gorman is an actress and it started as a stage show. And we have the same cover design: Apparently when book cover designers see “woman” and “healthcare” in the write up they think “naked stock-photo chicks without heads.” But anyway.

Is it just me?

Gorman is a model-turned-actress, and she starts the book on full-steam “don’t hate me because I’m beautiful.” As a peasant-build swarthy woman, I found myself thinking, no, I never did want to work out that much, so I really don’t want to be you. This is a lot of the book’s hook: “Sex in the City” meets “Something That’s Never Ever On TV Except Maybe with Rosie O’Donnell or Archie Bunker.” The book is very New York and fashion centric, throwing around names of labels and drinks and so forth. Anyway. Gorman was working as a cocktail waitress to support herself as she switched careers from modeling to acting. She got hit by a car in a horrific accident, suffered major trauma to the head, back, and everything else, and spent two years recovering. Holy smokes, it sounded excruciating. Despite the trauma, her funny voice carries the book. I enjoyed reading—and was stunned by—her growing awareness about what happens to people who suddenly can’t work. She’s honest about all of her self-loathing and crises of faith, and there are vulnerable moments immediately transformed into sarcasm. Gorman was raised by a single mom, and I like that she includes details of living on the edge financially in her childhood. It helps me relate to her and gives the book some depth. But I had two major issues with the book that actually made me squirm, all snark aside. First—and biggest. Gorman is actually SAVED by the Social Security safety net. That is the meat of this book. It’s not actually much about healthcare at all despite moments of mooning at sexy doctors and excruciating pain. Here’s what saves her: Social Security Disability (which she gets), food stamps (which work for her even though it is not enough to feed one’s self with), Medicaid, and the no-fault law in New York which provides some funding for pedestrians hit by vehicles. She has battles with all of these government offices, but she gets her benefits and struggles to adjust. Then she is basically abused by the legal system. She has a crazy judge, gets a settlement, but it’s not anything to make her rich. Again, the legal system around car accidents is not healthcare. Healthcare is doctors and nurses and other practitioners curing people. Health Insurance is that cesspool that the practitioners and patients have to wade through to do their jobs. This is a huge misunderstanding. The battles about the Affordable Care Act (maybe you’ve heard about the recent Supreme Court thing)—and some people’s hatred of the act—might have something to do with this massive confusion. Maybe people mush all this “helpy” stuff together. Maybe they think if they strike down the ACA, they would be getting people off food stamps. I think the confusion in Gorman’s book—and the fact that a major publisher, Penguin, would make no move to correct it—indicates pretty obvious cluelessness about what is and is not healthcare. One of the things Gorman is angry about is that it takes her months and months to find Medicaid and other social services; she wonders why there “isn’t any communication between these government agencies and the general public?” (p. 170). I think this is a big issue with people who either hang out with or identify as privileged. Gorman has a huge issue with asking for help; she mentions more than once that she never does it. She never talks to a hospital social worker or a chaplain, who would have immediately steered her in the right direction. She has apparently never had a friend or acquaintance who admitted to being on any of these services. The government has wisely decided not to focus its outreach materials about Medicaid on the cocktail bars of Manhattan. The contribution of her book is that she’s breaking silence about the shame of social class issues, even though her inability to do so at the time prolonged her agony. Obviously, this is much harder and more traumatic for people who are identified with their class situation as a part of their identity. This leads to my second biggest issue, and the only place where I felt like Gorman was shading the truth either in one direction or another. It’s a throwaway moment at the beginning of the book: she says she didn’t have insurance because she “couldn’t afford it.” She gives enough class markers to let us know that she was maintaining her Louboutin lifestyle with consignment store shopping, but she doesn’t give the dirt: did she actually LOOK for insurance, or did she blithely assume she wouldn’t need it? If she assumed she wouldn’t need it, she made a dumb innocent mistake and I want her to own it and move on, because that makes her part of a huge group of youngish people who shouldn’t (I think) have to wade through a confusing system that will ultimately just screw them anyway. But without insurance, how does she get birth control, etc.? Inquiring minds like me want to know that stuff. Health insurance questions, especially for young women, immediately lead to lots of real questions about bodies and choices, and I want to know. Because she doesn’t tell me, I don’t get the benefit of understanding what her story really means. Is she clueless, or is she shut out of affording even a catastrophic plan because of her cocktail waitress take-home pay? Either story is important. There are two tacked-on sections at the end where she gives readers an overview of the ACA, and says that she still doesn’t have insurance because she now has massive pre-existing conditions, and the ACA would forbid that discrimination. The research chunk doesn’t sound like her voice. The personal experience after the book about still not having insurance…That’s the book I want to read, and that’s the healthcare system. Then there’s a section where someone gives her a free first-class ticket to India and she goes and has insights at a meditation retreat about sharing her story and that she’s at peace with what happened. I didn’t like that, and I am restraining myself from writing more. I don’t like (okay, I loathe) the Eat-Pray-Love spiritual colonialism of going to a Third World nation to get enlightenment and then coming back to make this into a product to sell to people. This would launch me into an Eat-Pray-Love diatribe, and since I hate it when reviewers go off on tangents that aren’t central to the books, I will not do it. Big picture: the good news is that the ACA is intact for now, but there are many cracks through which people without insurance will continue to fall. It’s a complicated, un-integrated system. Healthcare is still private. And Gorman got saved by the public sector.