Review: Then Comes Marriage by Roberta Kaplan

Review: Then Comes Marriage by Roberta KaplanThen Comes Marriage: United States v. Windsor and the Defeat of DOMA by Roberta Kaplan, Lisa Dickey, Edie Windsor
Formats available: hardcover, ebook, audiobook
Pages: 336
Published by W. W. Norton & Company on October 5th 2015
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Roberta Kaplan’s gripping story of her defeat of the Defense of Marriage Act (DOMA) before the Supreme Court.
Renowned litigator Roberta Kaplan knew from the beginning that it was the perfect case to bring down the so-called Defense of Marriage Act (DOMA). Edie Windsor and Thea Spyer had been together as a couple, in sickness and in health, for more than forty years—enduring society’s homophobia as well as Spyer’s near total paralysis from multiple sclerosis. Although the couple was finally able to marry, when Spyer died the federal government refused to recognize their marriage, forcing Windsor to pay a huge estate tax bill.
In this gripping, definitive account of one of our nation’s most significant civil rights victories, Kaplan describes meeting Windsor and their journey together to defeat DOMA. She shares the behind-the-scenes highs and lows, the excitement and the worries, and provides intriguing insights into her historic argument before the Supreme Court. A critical and previously untold part of the narrative is Kaplan’s own personal story, including her struggle for self-acceptance in order to create a loving family of her own.
Then Comes Marriage tells this quintessentially American story with honesty, humor, and heart. It is the momentous yet intimate account of a thrilling victory for equality under the law for all Americans, gay or straight.

My Review:

This book, like yesterday’s review book, Grant Park, is about a day when the universe changed.

That book centered around the election of Barack Obama. This one concerns events that took place after Obama was elected, events that probably would have taken a lot longer under a different administration.

On March 27, 2013, the Supreme Court heard oral arguments concerning the case of United States V. Windsor, the case that struck down DOMA, the Federal Defense of Marriage Act, as unconstitutional. Windsor became the precedent that enabled courts across the U.S. to strike down state statutes that attempted to restrict marriage. This past summer, in the case of Obergefell v. Hodges, marriage equality became the law of the land.

forcing the spring by jo beckerThen Comes Marriage is the third book that I have read about this case and its aftermath. Last year’s Forcing the Spring (reviewed here) is an account of the other marriage equality case that came before the Supreme Court in 2013, the case against California’s Prop 8. In some ways, Then Comes Marriage feels like the other side of that story, as the reporter who wrote Forcing the Spring was embedded in the other legal team. And though she interviewed the principals in Windsor after the fact, her coverage of the Windsor case is naturally not as complete as it is for the case that she was personally involved with.

Speak Now by Kenji Yoshino (reviewed earlier this year) also covers the Prop. 8 case, but from the perspective of a married gay lawyer who was not professionally involved in the case but would be impacted by the result.

I found it interesting that both the Yoshino book and this one take their titles from ages old references to marriage and being married. The other title is a play on the part of the marriage ceremony where the officiant addresses the audience regarding whether anyone can show just cause to stop the impending marriage with the phrase “speak now or forever hold your peace”.

Then Comes Marriage is part of a childhood taunting rhyme, “First comes love, then comes marriage, then comes someone with a baby carriage.” Because after the recent rulings that someone could be a man and woman, two women, or two men. Love is love and marriage is finally marriage.

But this book, as written by the lawyer who argued the Windsor case, starts at the very beginning. And in this beginning are Edie Windsor and Thea Spyer, two women who pledged their love to each other in 1967, at a time before the Stonewall Riots when they secretly hoped but never expected that the marriage that Thea proposed to Edie could ever be celebrated in the U.S. Although they were not able to marry in the U.S., Edie and a terminally ill Thea flew to Toronto in 2007 to get married.

The U.S. recognizes marriages conducted in Canada, but DOMA prevented the U.S. from recognizing Edie’s marriage to Thea. So when Thea died in 2009, the Federal government and New York State presented her with a whopping $600,000 bill for inheritance taxes. Taxes that Edie would not have had to pay if Thea had been Theo or Edie had been Eddie. But not, at that time, both.

Edie chose to fight. This was her case. But she won for everyone.

Reality Rating A-: It’s pretty clear to anyone who has read my reviews of Speak Now and Forcing the Spring that I am for marriage equality. So I was predisposed to like this book from the outset.

As a narrative of the case, it reads differently from Forcing the Spring. That was a legal thriller to rival anything by Grisham. It’s also different because the stars in the Prop 8 case were the two lawyers who argued the case.

In Then Comes Marriage, Edie Windsor is the center of the story. Unlike a lot of civil rights legislation, no one went shopping for a perfect set of plaintiffs to represent the spectrum of the case. Edie had a very specific grievance, and she wanted things to be set right. While the money was important, the real issue was that the government said her marriage did not exist, that her 40+ years of living with, loving, and supporting Thea did not count, that they were legally strangers to each other.

When the story of Edie’s life with Thea is portrayed, it is crystal clear to the reader just how wrong that was. Also the legal case was very clear and relatively simple. The marriage was legally conducted in Canada. The U.S. recognizes Canadian marriages as valid. What was the rational basis for treating Edie and Thea’s marriage differently? And the court came to the conclusion that there wasn’t one.

While the story of Edie’s life felt relevant, the book begins with a section on the lawyer’s life, and how and why she ended up arguing this case. While it seemed fitting that the author’s motives, thoughts and feelings were interjected into the story of the progress of the case at frequent intervals, I wasn’t sure that she was the place to start. The back-to-back biographical sections made the beginning of the book drag just a bit.

But once the case starts proceeding through the courts, the narrative tension mounts at a gripping pace. Even though we know how the story ends, the process of getting there still had me opening the book in unlikely places, just to see how things were going. I felt like the protagonists did while waiting to read the rulings, peeking at any interval just to get in a few more words.

The author’s description of the aftermath of the case reads like a victory lap. And so it should. Edie Windsor, and the author, made the universe change.

Review: Freedom of Speech by David K. Shipler

Review: Freedom of Speech by David K. ShiplerFreedom of Speech: Mightier Than the Sword by David K. Shipler
Formats available: hardcover, paperback, ebook, audiobook
Pages: 352
Published by Knopf on May 12th 2015
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A provocative, timely assessment of the state of free speech in America
With his best seller The Working Poor, Pulitzer Prize winner and former New York Times veteran David K. Shipler cemented his place among our most trenchant social commentators. Now he turns his incisive reporting to a critical American ideal: freedom of speech. Anchored in personal stories—sometimes shocking, sometimes absurd, sometimes dishearteningly familiar—Shipler’s investigations of the cultural limits on both expression and the willingness to listen build to expose troubling instabilities in the very foundations of our democracy.
Focusing on recent free speech controversies across the nation, Shipler maps a rapidly shifting topography of political and cultural norms: parents in Michigan rallying to teachers vilified for their reading lists; conservative ministers risking their churches’ tax-exempt status to preach politics from the pulpit; national security reporters using techniques more common in dictatorships to avoid leak prosecution; a Washington, D.C., Jewish theater’s struggle for creative control in the face of protests targeting productions critical of Israel; history teachers in Texas quietly bypassing a reactionary curriculum to give students access to unapproved perspectives; the mixed blessings of the Internet as a forum for dialogue about race.
These and other stories coalesce to reveal the systemic patterns of both suppression and opportunity that are making today a transitional moment for the future of one of our founding principles. Measured yet sweeping, Freedom of Speech brilliantly reveals the triumphs and challenges of defining and protecting the boundaries of free expression in modern America.

Most of the time, freedom of speech is an abstract concept. And even though it is enshrined in the Bill of Rights, the interpretation of what that simple phrase, “freedom of speech”, means in real life often depends on interpretation, and on which side of the current debate you might happen to be on.

The text in the U.S. Constitution reads as follows:

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

One of the things that people often miss is that the direction of this law is to Congress. As written, it reflects the things that governments might want to do to us – it doesn’t actually address things that we might do to each other as private citizens.

There are a few legal restrictions on the freedom of speech, but there are many other ways to restrict speech. This book discusses real cases of where the freedom of speech has come under attack or into question, and by personalizing these stories provides a way for us to appreciate both the strengths and the limitations of those few brief words in the Constitution.

The author has grouped the situations where the “rubber meets the road” as far as free speech is concerned into some very challenging situations. The issues that he covers are: censorship, whistleblowing, bigotry, politics and culture. Because free speech is challenged in different ways and through different means in each of these instances.

One of the contradictions that is made unflinchingly clear, we may have freedom of speech, however, it may be abridged, or chilled or denied. What we don’t have (and generally shouldn’t) is the freedom from the consequences of that speech. And whether we like it or not, the challenges to our freedom of speech may very well be people who firmly believe that they are defending it.

Or us.

Reality Rating A: It’s the way that the author has personalized the abstract that brings this book to life. He doesn’t just talk in glowing platitudes about the freedom of speech, he takes deep dives into the hearts and minds who have fought, or are being fought, to protect or abridge that right.

And he also dissects some of the ways that free speech hurts, and why that makes it even more necessary.

The first section immediately drew me in, because it covered censorship, particularly as it applies to library book bannings and challenges. This is a subject with which I’m intimately familiar. At one of my former places of work, I was the person tasked with responding to challenges and overseeing the formation and the work of the staff assigned to serve on challenge committees and make recommendations.

absolutely true diary of a part time indian by sherman alexieEven though this is Banned Books Week, the reality is that in today’s climate, books are challenged rather than banned. And it is generally books aimed at a teenage audience, although not always. As the author demonstrates by getting into the cases in Missouri (Slaughterhouse Five), Michigan (Waterland and Beloved), New York State (The Perks of Being a Wallflower, and practically everywhere (The Absolutely True Diary of a Part-Time Indian). The late-breaking case about The Immortal Life of Henrietta Lacks in Tennessee shows that this is very much still happening. The one area where even childrens’ books get challenged is homosexuality, as the cases of Heather Has Two Mommies, And Tango Makes Three and Uncle Bobby’s Wedding make perfectly clear.

But in all these cases, the parental request is not to ban the book from the world, or even the U.S. This is impossible. But it generally comes down to “not their child” or “not for children” or “not at school”. They are often trying to maintain their child’s innocence just a little longer, and resent a school system that prefers to expose their children to what many people believe is the real world.

The striking thing is that such challenges always include the caveat that the person is not against freedom of speech, merely that this one thing, whatever it is, and whether they’ve read it or not, should not be protected, or that their children should be protected from it.

What is also clear in this section is that censorship can take many other, and more insidious, forms. Teachers in schools are unfortunately forced to teach to their state’s tests. And those tests can reflect biases and perspectives that support a political agenda or maintain the status quo. One of the big debates right now is about American exceptionalism and the beneficence of capitalism. Materials that do not reflect the desired perspective can be excised from the curriculum, and even where the teachers have limited freedom to teach from materials that are outside the curriculum, they may be squeezed out of those lessons by the unrelenting pressure of time to prepare their students for the tests.

Should we learn how the rest of the world views us while we are in high school, or should such knowledge wait until adulthood? Of course, with the prevalence of echo chambers on the internet, if we don’t seek out views that challenge our own, we may never find them.

The chapters on whistleblowers and the cost to those who choose to expose wrongdoing in organizations of which they are a part, especially when those organizations are the government, is chilling. The press may have freedom, and speech may be free, but the cost to individual whistleblowers is life-changing in a catastrophic way. And yet, a free society needs people who are willing to shine lights into dark places and risk the excoriation, persecution and sometimes prosecution that follows. By interviewing less famous whistleblowers, the author shines a light on how speech can be suppressed by the chilling effect of a threat to one’s job, one’s security, one’s personal freedom. And it gives us a little light into why people do it anyway.

Each section is like the two I have described. The author illustrates this abstract concept of freedom of speech by giving us real people and real situations to follow and empathize with. The sections on bigotry, hate speech and conspiracy theorists are particularly chilling, at least in part because those are areas we often feel squidgy about.

I found the last section particularly riveting. The story is about a very edgy artistic director at Theater J, an often flying-on-the-edge of controversy theater at the Jewish Community Center in Washington D.C. The art director put on challenging productions that often sold out, but equally often asked questions about Jewish themes and Israel’s place in the world and some of its past acts and policies that made some people very uncomfortable, out of a fear that questioning Israel’s actions might erode Israel’s U.S. support in Congress. The Q&A sessions after the productions were intellectually challenging and provocative. But because some of those plays shone a harsher light on some of Israel’s acts than certain conservative felt was desirable, there was a lot of push-back from potential donors to the Theater’s parent organization. We see the increasing pressure, as fears about money and perceptions that the Theater may be willing to go further out than its organization feels it can tolerate, create more and more artistic compromises. Speech may be free, but the cost to exercise it is not.

In writing this review, I took a look to see what had happened to the artistic director. He was fired, after 18 years as artistic director, because he wasn’t willing to back off from that intellectually challenging edge. He’s started another theater company elsewhere in DC, but his story shows that the cost of standing on that ledge of freedom of speech can be high.

If you are interested in putting human faces and voices to that abstract concept of freedom of speech, read this book.

Review: Patience and Fortitude by Scott Sherman

Review: Patience and Fortitude by Scott ShermanPatience and Fortitude: Power, Real Estate, and the Fight to Save a Public Library by Scott Sherman
Formats available: hardcover, ebook
Pages: 205
Published by Melville House on June 23rd 2015
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A riveting investigation of a beloved library caught in the crosshairs of real estate, power, and the people’s interests—by the reporter who broke the story   In a series of cover stories for The Nation magazine, journalist Scott Sherman uncovered the ways in which Wall Street logic almost took down one of New York City’s most beloved and iconic institutions: the New York Public Library.
In the years preceding the 2008 financial crisis, the library’s leaders forged an audacious plan to sell off multiple branch libraries, mutilate a historic building, and send millions of books to a storage facility in New Jersey. Scholars, researchers, and readers would be out of luck, but real estate developers and New York’s Mayor Bloomberg would get what they wanted.
But when the story broke, the people fought back, as famous writers, professors, and citizens’ groups came together to defend a national treasure.
Rich with revealing interviews with key figures, Patience and Fortitude is at once a hugely readable history of the library’s secret plans, and a stirring account of a rare triumph against the forces of money and power.

The iconic lions that welcome readers to the entrance of the New York Public Library’s Central Library are named “Patience” and “Fortitude”. This made me wonder about the names of the two equally iconic lions that guard the entrance to the Art Institute of Chicago. Those two don’t have official names, but their unofficial titles are “stands in an attitude of defiance” and “on the prowl”. The difference in names may describe the difference between New York and Chicago, right there.

At the entrance to the New York Public Library
At the entrance to the New York Public Library

But the patience and fortitude in this book about the New York Public Library and its most recent step into controversy may be better attributed to those who campaigned against what looks remarkably like a real-estate boondoggle, at least from the outside looking in.

There’s plenty of story here. It begins with the very origins of NYPL, and its rather strange and certainly unique financing. In spite of the name, NYPL was never a public library in the way that most of us think of one. It is not a department of the city of New York, and is not owned or managed by the city. Nor is it an independent taxing district as many libraries are in the Midwest (and probably elsewhere)

Instead, NYPL is a private non-profit entity that owns the buildings of the library, while the city provides funds for personnel and other services – funds which are then administered by the private non-profit. To add to the confusion, the research function of NYPL was never intended to be supported by taxpayer dollars. The intent was for the research library to be supported by donations.

So there are two effectively competing agencies housed uneasily under one administrative roof, while everyone hopes that someone else will pay the bills. A plan which never works, but does provide at least some of the genesis for the mess that NYPL found itself in from 2007 until 2014.

Entrance to Donnell Library Center
Entrance to Donnell Library Center

The plan was to sell both the Donnell Library and the Mid-Manhattan Library, and to gut the Central Library’s book stacks, then combine all the services into the single remaining building at Fifth Avenue and 42nd Street. While the Donnell Library building was sold, the great recession intervened before any more damage could be done.

As the text makes pretty clear, it’s not that there wasn’t a financial crisis that needed to be solved, it’s that in the end, no one except the consultants and their staunchest supporters believed that the solution being proposed would actually solve anything at all. Those in opposition were convinced, and it looks like correctly, that the plan would cause structural damage to the Central Library building, further erode services both to the public and to researchers, and would not actually generate the income necessary to sustain the library. It didn’t help their cause that the claims of damage and rot to the structure of those incredible book stacks seemed overblown, and that no less drastic solutions were even considered.

In the end, it all looked like a grand shell game being played with other people’s money. In this case, NYPL’s money. It also looked increasingly to outsiders that even though no one involved from the library’s side did anything illegal, or made any money under the table, that there was more than a whiff of sweetheart dealing in the way that the properties were going to be, or in the case of the Donnell Library actually were, disposed of.

And no one anywhere should ever believe any consultant on a major building project who claims that there can’t possibly be any cost overruns. There almost inevitably are cost overruns, and the less you expect them, the more ruinous they are.

Reality Rating B+: Before I discuss the gist of this story, I need to insert a caveat or three. I am a librarian, and while I never worked at NYPL, I did work at two of the other city libraries named in the text, Chicago and Seattle. I also served in a middle-management position, not just at CPL and SPL, but also at several middle-sized public libraries, which gave me the opportunity to observe library board meetings on a regular basis, and interact with the boards of trustees at some of those institutions. What I am saying is that I know something about how the sausage is made, and can see similarities to situations I worked in fairly clearly.

So reading this book felt a bit like insider baseball. Some of the people involved were nationally recognized it the profession. And the situations they got themselves into had the ring of familiarity.

The financial situation at NYPL was never very stable. As a librarian, it was considered a great place to have on your resume, but a lousy place to actually work because NYPL did not pay a living wage for the city of New York. Reading the introductory chapters of this book makes it pretty clear why the finances were so precarious.

One of the things that I found amazing was the way that the powers that be at NYPL during this era used their unique situation to suit themselves. They went to the city hat in hand to beg for money for this project, while at the same time frequently ignoring Freedom of Information Act Requests and even demands from the press or the State Legislature for information, and they did it with impunity as a “private non-profit”.

The main part of this saga begins in 2007. This was just before the great recession dropped the bottom out of the real estate market pretty much everywhere. It was also the point where the Google Books project to digitize the collections of great research libraries, including NYPL, was in full swing – and before it ran afoul of the copyright laws in court. Some pundits on the bleeding edge were predicting that libraries would either be all digital or completely obsolete in a relatively short time. Basing the building design on a premise that hadn’t yet been proven looks foolhardy in retrospect. Especially when combined with the notion that “everything will be digitized” when the volume of “everything” that existed prior to the ubiquity of computers is much too high a volume to be digitized within the lifetime of anyone now living.

There has also been a longstanding shift in the library profession to a “give ‘em what they want” mentality. The other side of that coin is when “they” stop wanting something, it’s time to throw it out to make way for something new that “they” will want. This works fairly well in most public libraries, and is an absolute necessity because real estate and shelf space are generally expensive and always finite. But in a research library like the NYPL Central, the intention is to keep a broad and deep collection because we don’t know what some researcher will want 5 or 10 or 50 years from now. But we know that if we don’t preserve it, it won’t exist for that researcher to find.

A panoramic view of the Rose Reading Room
A panoramic view of the Rose Reading Room

And then there was the issue at NYPL that the steel book stacks are physically supporting the Rose Reading Room on the top floor. Take out the book stacks and the top floor becomes the bottom floor with a sudden and resounding crash. While there were designs to account for this, none of them seemed as sturdy, robust or even as beautiful and simply functional as the existing stacks.

Part of the plan was that the 3 million volumes housed in those stacks be relocated to off-site storage in New Jersey for better preservation. There was a frequently articulated promise that books would be made available within 24 hours. The problem with this part of the plan was that patrons already had plenty of experience with off-site storage, and 24 hours was known to be a laughable dream. Three or four days was considered an achievable dream, but a week was not unheard of.

As part of this phase of the plan, the powers that be conducted a stealth removal of the books in the stacks, sending them to off-site storage and to private warehouses. The stacks are now echoingly empty, even though the grand plan is dead, and some of the books are completely inaccessible. Others were lost in transition.

There have been any number of libraries and library directors who have found themselves in the midst of hurricanes of controversy over plans to vastly eliminate or move the collections of their libraries. One of the more infamous cases occurred at the San Francisco Public Library in the mid 1990s (see Nicholson Baker’s scathing book, Double Fold, for an example of just how acid the vitriol became). There are more recent stories from the Urbana Free Library in Illinois and the Berkeley Public Library in California. Every librarian knows that massively weeding or otherwise removing the collection is one of the fastest ways to generate negative publicity that libraries can fall into. But the librarians seem to have been left out of the decision-making loop in all of the planning for this great plan.

The NYPL Central Library, with its enduring and patient lions, is a living symbol of the city. It is also a storied place of history, where many scholars and writers did their research and composed some of their greatest work. It’s also a place that, in spite of its often shaky finances, fulfilled every library’s purpose of being the “People’s University” with its doors and its collections open to any researcher or reader who visited its hallowed halls. There were too many people, both famous and forgotten, who loved that building and the purpose it served.

The real estate moguls never had a chance. Just this once, the pen was mightier than the pocketbook. But it was still one hell of a fight.

Review: The World Between Two Covers by Ann Morgan

Review: The World Between Two Covers by Ann MorganThe World Between Two Covers: Reading the Globe by Ann Morgan
Formats available: hardcover, ebook, audiobook
Pages: 326
Published by Liveright on May 4th 2015
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A beguiling exploration of the joys of reading across boundaries, inspired by the author's year-long journey through a book from every country.
Following an impulse to read more internationally, journalist Ann Morgan undertook first to define "the world" and then to find a story from each of 196 nations. Tireless in her quest and assisted by generous, far-flung strangers, Morgan discovered not only a treasury of world literature but also the keys to unlock it. Whether considering the difficulties faced by writers in developing nations, movingly illustrated by Burundian Marie-Thérese Toyi's Weep Not, Refugee; tracing the use of local myths in the fantastically successful Samoan YA series Telesa; delving into questions of censorship and propaganda while sourcing a title from North Korea; or simply getting hold of The Corsair, the first Qatari novel to be translated into English, Morgan illuminates with wit, warmth, and insight how stories are written the world over and how place-geographical, historical, virtual-shapes the books we read and write.

The World Between Two Covers is a book about thinking about what you read, and why you read it. By thinking about “why you read it” I don’t mean which genres you love (or don’t). The “why” in this instance is much more about “why are particular books available to you (or not)” than why you find a particular book or genre engaging.

Not that the author of The World Between Two Covers was not engaged with many of the books she read, and not that I wasn’t engaged in reading about her journey. Because she was, and I certainly was.

The story here is about her journey through books. She goes from what made her decide to take this journey, through her process of actually managing it. And along the way she dives into the realms of why certain books are and are not available, and what effect the overwhelming preponderance of the the Western, anglophone marketplace juggernaut may have on literature and its availability in the future.

It’s a lot to wrap into one book.

This is not a collection of her reviews of the books she read during her figurative year abroad. The reviews are available on the author’s website, appropriately named, A Year of Reading the World, which she did in 2012. This is her story about doing it.

Part of the fascination of the project is in the sleuthing. When one is exclusively a reader in the English language, one of the first hurdles one must climb over is that one needs to find English translations for everything one plans to read.

It turned out that an even bigger hurdle for the author was in determining what exactly constituted her “world” and then finding some work, sometimes finding any work, from a particular country. Not merely finding an English translation of a work, but finding a work at all.

Not every voice is heard. Some places don’t have a written literary tradition. Some places don’t have a publishing tradition. Everyone, everywhere has access to American and British lit, or at least they do if they have some access to the internet. But the converse is certainly not true. She found herself relying not just on the recommendations of strangers to find material, but also on the kindness of strangers to find, or in one memorable case, create, translations for her.

As someone who is part of the world of reading and reviewing, I found this glimpse into another writer’s process absoluting fascinating. As a librarian, I found her thoughts on the publishing and reading landscape gave me insight into conditions that we don’t think about too much.

But perhaps we should.

Reality Rating B: There are the books. Then there is the process of getting the books. And finally, there is the writing about books and reading and publishing and what it means when we stay within our own comfortable little houses of mirrors. And what it feels like when we don’t.

Each of the aspects of this book will have its proponents. And for those who are disappointed that the reviews are not included, the joy of the internet means that they are all still available at A Year of Reading the World.

For this reader, the heart of the book was in the way that the author thought about what she read and about the circumstances that made certain books available, and works by other countries very nearly impossible to track down.

In the U.K., where the author is based, only 4% of the books available are works in translation from other languages. In the U.S., that figure is estimated to be 3%. In other “First World” countries where English is not the dominant language, those numbers rise to 30% or 40%. Everyone consumes our product, but ours is not cross-pollinated by much material from anyone else. There are questions about the effect of this imbalance on literature as a whole. We read in an echo chamber, and it’s an echo chamber that we increasingly export to the rest of the world. And writers in languages other than English are increasingly writing to what they perceive as the U.K./U.S. Western market because that’s where the money is. But the question of what voices are being lost echoes throughout the book.

The author also speaks to the way that the books that we are used to support our Western-centric worldview, a perspective that often reinforces the view of the West as conquering heroes and bringers of civilization to places that are seen as less-enlightened. Stories from other parts of the world present a different and sometimes uncomfortable perspective for us, that we have created messes in places where we chose to tromp on the existing culture instead of understanding and working with it.

For a small and not too uncomfortable sample of this view, as a U.S. reader watch or listen to BBC News for a few days. The BBC reports on a lot of parts of the world that U.S. news doesn’t bother to cover, and for the BBC, the U.S. is quite naturally NOT the center of the universe. But I digress.

On the one hand, the internet is what made this book possible. Without the ability to contact people from all over the globe at the click of a “Send” button, and without the ability for people around the world to see her project and want to help, this book could not have happened. At the same time, the internet can be seen to a homogenization of culture and literature that may not be good for anyone, as the voice of the internet becomes more and more Western centric, anglophone, and increasingly controlled by corporate interests.

If you care about what you read, this book will make you think about it. Hard. And that’s an excellent thing.

Review: The Immortal Life of Henrietta Lacks by Rebecca Skloot

Review: The Immortal Life of Henrietta Lacks by Rebecca SklootThe Immortal Life of Henrietta Lacks by Rebecca Skloot
Formats available: hardcover, paperback, ebook, audiobook
Pages: 370
Published by Crown Publishing Group on February 2nd 2010
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Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells were taken without her knowledge and still live decades after her death. Cells descended from her may weigh more than 50M metric tons.
HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.
The journey starts in the “colored” ward of Johns Hopkins Hospital in the 1950s, her small, dying hometown of Clover, Virginia — wooden slave quarters, faith healings, and voodoo. Today are stark white laboratories with freezers full of HeLa cells, East Baltimore children and grandchildren live in obscurity, see no profits, and feel violated. The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of.

The Immortal Life of Henrietta Lacks was recommended to me in glowing terms by multiple people the year that it was published. And being in a contrary mood, I didn’t read it at the time.

I’m here to say that everyone who told me to “READ THIS BOOK” was absolutely right, and I was wrong to wait. This thing is awesome on so many levels.

It’s a medical mystery. It provides some serious context for discussions of medical privacy, including those HIPAA forms we all sign every time we get medical treatment these days. It dives deeply into the field of medical ethics. It makes you think about fairness and justice. It provides a fascinating and humanized history lesson in cell research.

And the description of cervical cancer treatment in 1951 is scarier than any horror movie ever made. It’s not that Henrietta Lacks was treated badly at that point, it’s that the treatment in general seems absolutely barbaric from early 21st century perspectives. The standard treatment was to insert tubes of radium into her cervix and sew them in place for TWO DAYS. If you are a woman and this doesn’t make you reflexively clench your legs shut, you are a much braver woman than I. The description of this treatment makes Torquemada look benevolent.

But this was the state of cancer treatment in 1951.

However, the story of The Immortal Life of Henrietta Lacks both is and isn’t about Henrietta herself. Because Henrietta died in 1951. Her cancer killed her. But not before her doctor removed bits of both her tumor and her healthy organs and turned them over to the nascent science of cell research.

Cell science was nascent because of one major problem, the researchers couldn’t manage to keep a cell line alive for more than a few days. The bits of Henrietta that her doctor sliced out without her permission did not obey the normal rules of harvested cells. Just as her tumors grew at an unprecedentedly rapid rate, so did her harvested and cultured cells.

Henrietta Lacks died, but her harvested HeLa cells, thrived. At first only at Johns Hopkins, but eventually at biological research labs and companies all over the world. The cancer that killer her also made her immortal.

Henrietta, through her HeLa cells, helped cure polio. And diagnose cancer, and create vaccines for HIV and HPV. And helped scientists to study the effects of travel in outer space on human cells. You name a medical breakthrough in the past 60+ years, and HeLa cells are somewhere in the story, whether the actual cells, or the techniques that were created around them.

HeLa has saved thousands, probably hundreds of thousands of lives. Those cells have also made hundreds of researchers and biological products companies either rich or famous, and sometimes both.

But her family was not informed. Nor did they consent. In fact, when researchers needed better methods of distinguishing HeLa cells from other cultures, researchers took blood samples from her surviving family, without fully informing them of the purpose of the tests. And revealed their names and relationships to Henrietta in medical journals.

All of this seems unthinkable today, but at the time it took place, it was all legal. It wasn’t until the turn of the 21st century that a researcher chose to include Henrietta’s surviving family in research about Henrietta and her miraculous HeLa cells, but by providing the family with the scientific information and simple respect that they had been denied for so long, was able to both give them closure and create the first complete record of this formerly unsung woman who changed the face of medicine.

Escape Rating A+: This book is really two stories running in a kind of parallel. The first story is Henrietta’s story. Not just the biography of her actual life, but also a tracing of the history of her immortal medical afterlife. The continuing life and journey of her HeLa cells. Those cells helped to create a revolution in cell research, which in turn created a revolution in medicine.

As with so many revolutionary ideas, those revolutions fed on themselves in either a vicious cycle or virtuous circle, depending on one’s perspective. Once a line of viable cells, the HeLa line, came into existence, everything about cell research has spent decades playing catch up. All of the procedures for handling, transporting, culturing and eventually selling cells developed because there were finally cells to create procedures around.

But even more importantly, the ongoing discussions in medical ethics, medical research and patient confidentiality are still catching up to the developments made possible by the myriad opportunities that were opened with the HeLa cells. Henrietta did not give permission for her cells to be harvested and used. The law did not require it. What will astonish you is that the law still doesn’t.

The story of the author’s search for Henrietta and her family, and her work with them and for them over the years that this book was in development make for every bit as compelling a story as the story of the HeLa cells.

As the years went by after Henrietta’s death, and as her cells were used around the world, there was a long period of time in the history where her name was obscured or deliberately covered up. Multiple names were put forward as the original HeLa, including Henrietta Lakes, or Helen Lawson, and most often, Helen Lane. Even as one reads the accounts, one gets the feeling that there was an attempt to hide the origin of the cells from the family. When the HeLa research began, the infamous Tuskegee syphilis experiment was still going on, and there was a persistent and not totally false rumor mill that African Americans were frequently kidnapped for experimental purposes and often experimented on without their consent or knowledge. The kidnappings may have been apocryphal, but the experiments so clearly were not.

This was also the era of a kind of heroic medical researcher who thought nothing of injecting unsuspecting patients of all types (including sometimes themselves) with all manner of drugs and diseases without their consent. A study was conducted with HeLa cells, injecting HeLa cells, which were known to contain cancer, into healthy patients to see if they would develop cancer in turn. The patients were not informed because it might cause them “anxiety”. No kidding. And the great majority of the patients did develop tumors at the injection site which required surgery. At least one developed cancer.

Just the thought of this kind of research brings back the spectre of Nazi medical experiments in the concentration camps. And it makes me shudder in reflexive horror.

But as the real identity of the HeLa cell donor became more and more widely known, at least in medical circles, it also brought out of the woodwork more and more people who wanted to take advantage of the family in some way. By the time the author of this book began her quest, the family was angry at partial and incomplete explanations and disgusted by or frightened of the charlatans who knocked on their door.

So part of the story that the author tells is of her journey to being trusted, and then the journey she undertakes with Henrietta’s surviving daughter to uncover the truth. The questions that are explored, and the answers that they find, stick in the mind and heart of the reader long after the last page is turned.

Reviewer’s Note: The mother of a 15-year-old boy attending a STEM Academy in Knoxville Tennessee has requested that The Immortal Life of Henrietta Lacks be banned from the entire school district on the grounds that the book is “pornographic”. Her contention is based on two incidents in the book. Henrietta first diagnoses herself by inserting her own fingers into her vagina to find the lump on her cervix that she believed was present. Which it was. And the second “support” for the charge of pornography is that Henrietta’s medical records include her multiple diagnoses of syphilis and gonorrhea, and go on to explain that she contracted the venereal diseases from her husband’s promiscuity. This is not pornography. This is history. And gynecology. Also a whole lot of courage on Henrietta’s part. How many of us would rather continue in ignorance than investigate inside our own bodies for ourselves?