Ideas, opinions, and personal essays from respected writers, thinkers, and activists. A project of Beacon Press, an independent publisher of progressive ideas since 1854.
Today's post is from Carole Joffe, author of Dispatches from the Abortion Wars: The Costs of Fanaticism to Doctors, Patients, and the Rest of Us. Joffe is a professor in the Bixby Center for Global Reproductive Health at the University of California, San Francisco (however, the views and opinions expressed here do not necessarily state or reflect those of the Regents of the University of California, UCSF, or the UCSF Medical Center). This post originally appeared at RHRealityCheck.
It does not take a rocket scientist to realize that in health-care settings a positive relationship between clinician and patient—one comprised of mutual understanding, respect, and trust—is beneficial to both parties. It is only common sense that when such a relationship exists, however brief it may be, the provider develops more sympathy for the needs of the patient, and the latter’s overall well-being can improve if she or he senses personal interest and concern on the part of the former.
Arguably, this point is especially relevant in abortion care because of the extreme politicization and stigma that surrounds the procedure. Some patients, having been exposed to anti-abortion distortions, are terrified of the procedure (one provider told me of a patient who asked, “When are you going to use the steel ball with the knives on it?”) and some do not view abortion doctors as “real” doctors. Some physicians, in turn, depending on the circumstances of their particular facility, have little chance to interact with patients, except when she is on the procedure table, possibly under anesthesia. Therefore, these providers may have an inadequate understanding of the reasons that brought these women to the clinic. Indeed, several research studies of abortion staff done soon after abortion became legal in the United States have shown that those who had opportunities for verbal interaction with patients—for example, social workers and counselors—were more positively inclined toward patients than those whose interactions were confined to just physical care. My own research among abortion providing physicians has revealed that the aspect of this work many find most meaningful is simply talking to patients, and some are wistful that there is not more opportunity for this.
In the period immediately after Roe v. Wade, it was very common in most abortion settings for designated counselors or physicians to have the opportunity for open-ended discussion with a patient. This kind of encounter, which goes beyond offering the patient the requisite informed consent information and ascertaining she has not been coerced into the decision, has been difficult for many facilities to sustain over the years for various reasons, not the least being that in many states patient-doctor time is eaten up by doctors having to impart to patients legislatively mandated scripts about abortion, many of which contain blatant falsehoods. Nevertheless, most abortion facilities with which I am familiar make every effort to offer additional conversational time to patients who seem most in need of it.
What do these efforts to maintain meaningful provider-patient conversations have to do with Live Action, the anti-abortion group notorious for its undercover “investigations” of abortion clinics? For several years, Live Action operatives, pretending to be prospective abortion patients, have gone into clinics, questioning various levels of staff about abortion policies and procedures, and when their hidden cameras manage to catch a staff person making an inopportune comment, the organization triumphantly posts videos (typically highly edited) of these visits.
The latest Live Action “gotcha” moment is in a video of Dr. Leroy Carhart, one of the few providers in the United States who openly provides post-24-week abortions in selected circumstances, and as such is a longstanding target of the anti-abortion movement. In the video, Carhart is repeatedly grilled by a would-be patient, who portrays herself as 26 weeks pregnant, as to the procedure he would use in a pregnancy of that gestation. In response to the woman’s stated concern that a fetus whose demise has been caused by injection “would decay inside of her,” Carhart seeks to reassure her, at one point saying the fetus would soften like “meat in a Crock-Pot.” Predictably, Live Action, and subsequently other anti-abortion groups, have seized upon this statement and used it to further their campaign of what might be called the “Gosnellization” of individuals who provide later abortions—that is, to claim that Carhart and his colleagues are no different than the rogue doctor now on trial in Philadelphia for dangerous and illegal practices.
But Leroy Carhart and Kermit Gosnell could not be more different as abortion providers. As the New York Times pointed out in its coverage of this incident, “[T]he video provides no evidence of illegal action or subpar medical techniques.” Tracy Weitz, my University of California, San Francisco colleague, further pointed out to the paper the evident concern that Carhart exhibited toward the (imposter) patient, and offered this context to his “Crock-Pot” remark: “Doctors struggle to find terminology to help a client understand what’s happening, and while it may seem wrong to us, it may be appropriate for that conversation.” (The recent film After Tiller also amply demonstrates Dr. Carhart’s compassionate relationship with patients.)
What will be the upshot of this latest Live Action incident? Dr. Carhart, who previously provided later abortions in the clinic of Dr. George Tiller in Kansas before Tiller was assassinated, will not be deterred from his “mission” to carry on his friend’s work, as the former military surgeon often puts it. In the years since he decided to devote himself full-time to abortion work, Carhart has had extremists burn down his barn with 17 horses inside, seen the state of Nebraska pass a law deliberately aimed at preventing him from performing abortions after 20 weeks’ gestation, and is subject to constant protestors at his two clinics as well as vilification in anti-abortion media.
But while Dr. Carhart will continue with his work, I do fear that a possible consequence of these well-publicized Live Action videos may be a chilling effect on the free and open conversation between clinic staff and patients that is such an important part of abortion care. Should this occur, I have no doubt the anti-abortion movement will declaim self-righteously about the “coldness” and “impersonality” of abortion facilities.
This post originally appeared at the Hastings Center's Bioethics Forum.
Over the past month, a petition asking the governor of
Minnesota to investigate a research scandal at the University of Minnesota has
been steadily gathering momentum. The scandal in question originated in 2004
with the suicide of Dan Markingson in an AstraZeneca-funded study of
antipsychotics. The petition to investigate the scandal is backed by a number
of high-profile supporters, among them Lancet editor Richard Horton,
former BMJ editor Richard Smith, three former editors of the New
England Journal of Medicine (Marcia Angell, Arnold Relman, and Jerome
Kassirer), Wellesley College historian Susan Reverby, who uncovered the
Guatemala syphilis studies, Hastings Center co-founder Daniel Callahan, and
over 200 scholars in bioethics, clinical research,
medical humanities, and related disciplines.
The petition also has a noticeable gap. Very few signers come from
the University of Minnesota. In fact, only two people from the Center for
Bioethics have signed: Leigh Turner and me. This is not because any faculty
member outside the Department of Psychiatry actually defends the ethics of the
study, at least as far as I can tell. What seems to bother people here is
speaking out about it. Very few faculty members are willing to register their
objections publicly.
Why not? Well, there are the obvious possibilities—fear, apathy,
self-interest, and so on. At least one person has told me she is unwilling to
sign because she doesn’t think the petition will succeed. But there may be a
more interesting explanation that I’d like to explore. For those who are
unfamiliar with the scandal, however, let me backtrack briefly and explain the
events in question. (You can read the longer version in Mother Jones magazine
and additional background in a Bioethics Forum post.)
In late 2003, Dr. Stephen Olson, the head of the schizophrenia
program at the University of Minnesota, recruited an acutely psychotic young
man named Dan Markingson into an AstraZeneca-funded research study of
antipsychotic drugs. Olson enrolled Dan despite the fact that he had been
repeatedly judged incapable of giving informed consent, despite the fact that
his mother objected to his participation, and despite the fact that Dan had
been placed under an involuntary commitment order that legally compelled him to
obey Olson’s recommendations. For months, Mary Weiss, Dan’s mother, tried
desperately to get her son out of the study, warning that his condition was
worsening and that he was in danger of committing suicide. Her warnings were
ignored. In May 2004 Dan stabbed himself to death with a box cutter so violently
that he nearly decapitated himself.
The research study itself was plagued by ethical problems: financial
incentives to keep subjects in the study as long as possible, conflicts of
interest for the investigators, an inexplicable gap in the exclusion criteria,
and a questionable scientific rationale. AstraZeneca was eventually forced to
pay $520 million in fraud penalties, and some of its misconduct was traced back to the University of Minnesota.
You might think that events this alarming would prompt a
university investigation. That is not what happened. Instead, the university blocked Mary’s efforts to get Dan’s medical
records, and when her lawsuit against the university was dismissed on grounds
of sovereign immunity, it filed a legal action against her, demanding $57,000
in legal costs. Even as evidence has accumulated suggesting a much larger
problem involving more psychiatric studies and more mistreated
subjects, the university has stonewalled every effort to get to the truth.
Why would faculty members remain silent about such an alarming
sequence of events? One possible reason is simply because they do not feel as
if the wrongdoing has anything to do with them. The University of Minnesota is
a vast institution; the scandal took place in a single department; if anyone is
to be blamed, it is the psychiatrists and the university administrators, not
them. Simply being a faculty member at the university does not implicate them
in the wrongdoing or give them any special obligation to fix it. In a phrase:
no guilt, hence no responsibility.
My view is somewhat different. These events have made me deeply
ashamed to be a part of the University of Minnesota, in the same way that I
feel ashamed to be a Southerner when I see video clips of Strom Thurmond’s
race-baiting speeches or photos of Alabama police dogs snapping at black civil
rights marchers. I think that what our psychiatrists did to Dan Markingson was
wrong in the deepest sense. It was exploitative, cruel, and corrupt. Almost as
disgraceful are the actions university officials have taken to cover it up and
protect the reputation of the university. The shame I feel comes from the fact
that I have worked at the University of Minnesota for 15 years. I have even
been a member of the IRB. For better or worse, my identity is bound up with the
institution.
These two different reactions—shame versus guilt—differ in important
ways. Shame is linked with honor; it is about losing the respect of others, and
by virtue of that, losing your self-respect. And honor often involves
collective identity. While we don’t usually feel guilty about the actions of
other people, we often do feel ashamed if those actions reflect on our own
identities. So, for example, you can feel ashamed at the actions of your
parents, your fellow Lutherans, or your physician colleagues—even if you feel
as if it would be unfair for anyone to blame you personally for their actions.
Shame, unlike guilt, involves the imagined gaze of other people.
As Ruth Benedict writes: "Shame is a reaction to other people’s criticism.
A man is shamed either by being openly ridiculed or by fantasying to himself
that he has been made ridiculous. In either case it is a potent sanction. But
it requires an audience or at least a man’s fantasy of an audience. Guilt does
not.”
In scandals, this imagined audience can produce very different,
even opposite, reactions. On the one hand, it is what leads many people to try
so hard to keep scandals secret. This impulse to cover up wrongdoing can be
toxic, as the Catholic Church has discovered. But it is also what leads
insiders to speak out publicly against a scandal. By speaking out, you show
that you are separating yourself from the wrongdoing in order to maintain your
honor and self-respect. You are saying to the world, “Do not think that I am a
part of this.”
Shame and honor may seem like old-fashioned ideas, but if you read
the comments left on the petition by University of Minnesota alumni, you cannot
help but be struck by their language. “How shameful for UMN, my alma mater.” “I
am a graduate of the University of Minnesota and want to be proud of my school,
but following this case has made me deeply ashamed.” “I am a University of
Minnesota alum, and I am ashamed of my alma mater right now.” “To call this
merely shameful would be wholly inadequate.” “Attended U of MN Medical School
and then U of MN Psychiatry residency – ashamed of the Psychiatry Department.” “I
am a graduate (CLA, 1981) and ashamed of the way the University continues to
handle this tragic case.” “The University's legal team should also be ashamed
of their behavior in further victimizing this family.”
Obviously, this shame is something I understand, or else I would
not be working so hard to raise awareness of the petition and convince others
to sign on. (You can sign the petition here.) I also believe that the
truth will eventually come out, and when that happens, there will be more than
enough shame to go around. The refusal to investigate will only make things
worse. As Jesse Ballenger writes on the petition, “As a faculty member at a
university (Penn State) now notorious for failing to investigate abuses, I find
the refusal of the University of Minnesota to confront this scandal sadly
familiar.”
Editor’s Note: Beacon Broadside’s editor, Jessie Bennett, is
one of the University of Minnesota alumni quoted above.
New York TimesWellBlog regular contributor Danielle Ofri has been praised for turning the triumphs and trials of medicine into riveting and compassionate stories. This eBook exclusive edition offers 98 pages of her best work for $3.99.
This eBook original exhibits Danielle Ofri's range and skill as a storyteller as well as her empathy and astuteness as a doctor. Her vivid prose brings the reader into bustling hospitals, tense exam rooms, and Ofri's own life, giving an up-close look at the fast-paced, life-and-death drama of becoming a doctor. She tells of a young man uncertain of his future who comes into the clinic with a stomach complaint but for whom Dr. Ofri sees that the most useful "treatment" she can offer him is SAT tutoring. She writes of a desperate struggle to communicate with a critically ill patient who only speaks Mandarin, of a doctor whose experience in the NICU leaves her paralyzed with PTSD, and of her own struggles with the fear of making fatal errors, the dangers of overconfidence, and the impossible attempts to balance the empathy necessary for good care with the distance necessary for self-preservation. Through these stories of her patients, colleagues, and her own experiences, Intensive Care offers poignant insight into the medical world, and into the hearts and minds of doctors and their patients. These stories are drawn from the author’s previous books and one is from her forthcoming book, What Doctors Feel: How Emotions Affect the Practice of Medicine.
Praise for Danielle Ofri
“The world of patient and doctor exists in a special sacred space. Danielle Ofri brings us into that place where science and the soul meet. Her vivid and moving prose enriches the mind and turns the heart. We are privileged to journey with her from her days as a student to her emergence as a physician working among those most in need.” —Jerome Groopman, author of How Doctors Think
“A gifted storyteller … Ofri describes how her patients’ histories stirred her to practice medicine more compassionately, inspired her with their hope and fortitude.” —Sarah Halzack, The Washington Post
“Danielle Ofri is a finely gifted writer, a born storyteller as well as a born physician, and through these … brilliantly written episodes covering the years from studenthood to the end of her medical residency, we get not only a deep sense of the high drama of life and death that must face anyone working in a great hospital but a feeling for the making of a physician's mind and soul, and for her bravery and vulnerabilities as she goes through the long years of apprenticeship.” —Oliver Sacks, MD, author of Awakenings and The Man Who Mistook His Wife for a Hat
“Danielle Ofri stands observing at the crossroads of the remarkable lives that intersect at Bellevue. She is dogged, perceptive, unafraid, and willing to probe her own motives, as well as those of others. This is what it takes for a good physician to arrive at the truth, and these same qualities make her an essayist of the first order.” —Abraham Verghese, author of The Tennis Partner and My Own Country
“Dr. Ofri is an exemplary model of professional compassion. Her beautiful stories linger at the curtains of disease, of class and culture of life, and of inevitable death. The stories challenge us to create new narratives of caring and listening.” —Bruce Hirsch, Tikkun
“Danielle Ofri has so much to say about the remarkable intimacies between doctor and patient, about the bonds and the barriers, and above all about how doctors come to understand their powers and their limitations.” —Perri Klass, MD, author of A Not Entirely Benign Procedure and The Mercy Rule
“Her writing tumbles forth with color and emotion. She demonstrates an ear for dialogue, a humility about the limits of her medical training, and an extraordinary capacity to be touched by human suffering. . . . an important addition to the literary canon of medicine.” —Jan Gardner, The Boston Globe
“…the news came over the radio. It was just an overwhelming feeling. I got tears in my eyes…at last it was all over, finally…never again the fear, the threat of going to prison…the fear of the woman not being able to get service. It was a new day.”
These words were spoken to me several years ago by a doctor I call David Bennett. I was interviewing Dr. Bennett for a book on abortion provision before Roe v Wade and had asked Bennett what his memories were of January 22, 1973. His thoughts were of particular interest to me. Unlike many of the other doctors active before Roe, who, understandably afraid of detection, quietly offered abortions only to a select few, Bennett had made the decision, as a matter of conscience, to offer abortions to all women who sought them.
Dr. Bennett worked closely with the Clergy Consultation Services, an organization of ministers and rabbis started in 1967, which established a referral list of medically competent and ethical physicians to whom these clergy could send distraught women facing unwanted pregnancies. In the years leading up to Roe, thousands of women, either referred by the CCS or who had heard of him through word of mouth, came to his small Southwestern city for abortions. The flood of abortion patients soon overwhelmed the rest of his medical practice, brought considerable strain to his family life, and, as his quote above suggests, led to a constant worry about criminal charges.
Despite his elation upon hearing of the Roe v Wade decision, the decision, of course, did not prove to be a “new day” —or more precisely, a problem-free new era — for Bennett and his abortion providing colleagues at all. (In contrast, it was was a new day for American women, as the death and injury rate from abortions fell dramatically after legalization. Not all those seeking abortions before Roe had managed to find safe providers like Bennett; many women attempted self-abortion or fell into the hands of the notoriously inept “butchers” of pre-Roe days).
The rapid rise of an anti-abortion movement after the Roe decision, including the eventual development of a violent wing of this movement, meant that Bennett and others went from fearing legal authorities to fearing the actions of terrorists. In the 40 years since Roe, eight members of the abortion providing community have been brutally murdered — including Bennett’s close friend, George Tiller of Kansas — and thousands more have been stalked, seen their clinics firebombed and vandalized, and have experienced aggressive picketers showing up at their homes, places of worship, and their children’s schools as well as their workplaces. Bennett himself, over the years, has several times had to rebuild his offices because of the serious damage caused by arsonists.
It’s not just — or even, primarily — episodic violence, however, that has made abortion provision extremely difficult in many places in the years since Roe. Abortion has been regulated like no other branch of American medicine. Since legalization, state legislatures have passed hundreds of laws, with a record number of these occurring in 2011 and 2012. Many of these laws, especially those dealing with the physical requirements of abortion providing facilities, are widely acknowledged to have nothing to do with patient safety and everything to do with making it financially impossible for these clinics to remain open. In more than 20 states, doctors are put in the ethically untenable position of being required by state mandate to impart to patients information that is scientifically invalid, such as the alleged links between abortion and breast cancer, infertility and suicide.
Today, in his seventies, David Bennett continues as an abortion provider, one of the last of the veterans of the pre-Roe era to do so. Encouragingly, a new generation of young physicians — mainly women — have sought training in abortion procedure, ready to carry on with this work. But in order for abortion access to be a reality anywhere other than the two coasts and a handful of other metropolitan areas, there have to exist the conditions under which this medical service can be delivered. Americans may be torn about abortion, but consistently, a majority have made clear their preference that abortion remains legal, as was strongly reaffirmed in the 2012 election. The “new day” that David Bennett dreamed of on January 22, 1973 can only happen if there is a forceful stand by this majority in support of these doctors and against both the violence and legislative persecution that has characterized abortion care in the United States.
Did you unwrap an e-reader this holiday season? Or did you treat yourself to one? (Don't worry, we won't judge.) Here are Beacon's most popular e-book titles for 2012 along with a few suggestions for titles sure to be on next year's bestseller list. Download one or two and see why they've inspired people to click and read.
At the time of Frankl's death in 1997, Man's Search for Meaning had sold more than 10 million copies in twenty-four languages. A 1991 reader survey for the Library of Congress that asked readers to name a "book that made a difference in your life" found Man's Search for Meaning among the ten most influential books in America.
"One of the great books of our time." —Harold S. Kushner, author of When Bad Things Happen to Good People
"One of the outstanding contributions to psychological thought in the last fifty years." —Carl R. Rogers (1959)
View the discussion guide for UU communities: HTML or PDF.
Dana, a modern black woman, is celebrating her twenty-sixth birthday with her new husband when she is snatched abruptly from her home in California and transported to the antebellum South. Rufus, the white son of a plantation owner, is drowning, and Dana has been summoned to save him. Dana is drawn back repeatedly through time to the slave quarters, and each time the stay grows longer, more arduous, and more dangerous until it is uncertain whether or not Dana's life will end, long before it has a chance to begin.
"Octavia Butler is a writer who will be with us for a long, long time, and Kindred is that rare magical artifact . . . the novel one returns to, again and again." —Harlan Ellison
"One cannot finish Kindred without feeling changed. It is a shattering work of art with much to say about love, hate, slavery, and racial dilemmas, then and now." —Sam Frank, Los Angeles Herald-Examiner
"In Kindred, Octavia Butler creates a road for the impossible and a balm for the unbearable. It is everything the literature of science fiction can be." —Walter Mosley
In this beautiful and lucid guide, Zen master Thich Nhat Hanh offers gentle anecdotes and practical exercise as a means of learning the skills of mindfulness--being awake and fully aware. From washing the dishes to answering the phone to peeling an orange, he reminds us that each moment holds within it an opportunity to work toward greater self-understanding and peacefulness.
"Thich Nhat Hanh's ideas for peace, if applied, would build a monument to ecumenism, to world brotherhood, to humanity." -Martin Luther King, Jr.
"He has immense presence and both personal and Buddhist authority. If there is a candidate for 'Living Buddha' on earth today, it is Thich Nhat Hanh." -Roshi Richard Baker, author of Original Mind: The Practice of Zen in the West
All Souls by: A Family Story from Southie Michael Patrick MacDonald
View the readers' guide: HTML or community guide:PDF
A breakaway bestseller since its first printing, All Souls takes us deep into Michael Patrick MacDonald's Southie, the proudly insular neighborhood with the highest concentration of white poverty in America. Rocked by Whitey Bulger's crime schemes and busing riots, MacDonald's Southie is populated by sharply hewn characters like his Ma, a miniskirted, accordion-playing single mother who endures the deaths of four of her eleven children. Nearly suffocated by his grief and his community's code of silence, MacDonald tells his family story here with gritty but moving honesty.
The Cure for Everything! Untangling Twisted Messages About Health, Fitness, and Happiness by Timothy Caulfield
In The Cure for Everything, health-policy expert and fitness enthusiast Timothy Caulfield debunks the mythologies of the one-step health crazes, reveals the truths behind misleading data, and discredits the charlatans in a quest to sort out real, reliable health advice. He takes us along as he navigates the maze of facts, findings, and fears associated with emerging health technologies, drugs, and disease-prevention strategies, and he presents an impressively researched, accessible take on the production and spread of information in the health sciences.
Overdiagnosed: Making People Sick in the Pursuit of Health by Dr. H. Gilbert Welch, Dr. Lisa M. Schwartz, and Dr. Steven Woloshin
Drawing on twenty-five years of medical practice and research, Dr. H. Gilbert Welch and his colleagues, Dr. Lisa M. Schwartz and Dr. Steven Woloshin, have studied the effects of screenings and presumed preventative measures for disease and "pre-disease." Welch argues that while many Americans believe that more diagnosis is always better, the medical, social, and economic ramifications of unnecessary diagnoses are in fact seriously detrimental. Unnecessary surgeries, medication side effects, debilitating anxiety, and the overwhelming price tag on health care are only a few of the potential harms of overdiagnosis.
Unchosen: The Hidden Lives of Hasidic Rebels by Hella Winston
When Hella Winston began talking with Hasidic Jews in Brooklyn for her doctoral dissertation in sociology, she was surprised to be covertly introduced to Hasidim unhappy with their highly restrictive way of life and sometimes desperately struggling to escape it. Unchosen tells the stories of these "rebel" Hasidim, serious questioners who long for greater personal and intellectual freedom than their communities allow. In her new Preface, Winston discusses the passionate reactions the book has elicited among Hasidim and non-Hasidim alike.
"Winston . . . builds fascinating case studies, inviting readers into her interviewees' conflicted, and often painful, lives . . . show[ing] us a Hasidic underworld where large families and a lack of secular education have resulted in extreme poverty and some serious at-risk behavior among youth. Her story of courage and intellectual rebellion will inspire anyone who has ever felt like a religious outcast." -Publishers Weekly, starred review
Around noon on January 15, 1919, a group of firefighters was playing cards in Boston's North End when they heard a tremendous crash. It was like roaring surf, one of them said later. Like a runaway two-horse team smashing through a fence, said another. A third firefighter jumped up from his chair to look out a window-"Oh my God!" he shouted to the other men, "Run!"
A 50-foot-tall steel tank filled with 2.3 million gallons of molasses had just collapsed on Boston's waterfront, disgorging its contents as a 15-foot-high wave of molasses that at its outset traveled at 35 miles an hour. It demolished wooden homes, even the brick fire station. The number of dead wasn't known for days. It would be years before a landmark court battle determined who was responsible for the disaster.
Plain Secrets: An Outsider Among the Amish by Joe Mackall
Joe Mackall has lived surrounded by the Swartzentruber Amish community of Ashland County, Ohio, for over sixteen years. They are the most traditional and insular of all the Amish sects: the Swartzentrubers live without gas, electricity, or indoor plumbing; without lights on their buggies or cushioned chairs in their homes; and without rumspringa, the recently popularized "running-around time" that some Amish sects allow their sixteen-year-olds.
Over the years, Mackall has developed a steady relationship with the Shetler family (Samuel and Mary, their nine children, and their extended family). Plain Secrets tells the Shetlers' story over these years, using their lives to paint a portrait of Swartzentruber Amish life and mores. During this time, Samuel's nephew Jonas finally rejects the strictures of the Amish way of life for good, after two failed attempts to leave, and his bright young daughter reaches the end of school for Amish children: the eighth grade. But Plain Secrets is also the story of the unusual friendship between Samuel and Joe. Samuel is quietly bemused—and, one suspects, secretly delighted—at Joe's ignorance of crops and planting, carpentry and cattle. He knows Joe is planning to write a book about the family, and yet he allows him a glimpse of the tensions inside this intensely private community.
“I was born male and now I’ve got medical and government documents that say I’m female—but I don’t call myself a woman, and I know I’m not a man. . . .”
Scientologist, husband and father, tranny, sailor, slave, playwright, dyke, gender outlaw—these are just a few words which have defined Kate Bornstein during her extraordinary life. For the first time, it all comes together inA Queer and Pleasant Danger, Kate Bornstein’s stunningly original memoir that’s set to change lives and enrapture readers.
Wickedly funny and disarmingly honest, this is Bornstein’s most intimate book yet. With wisdom, wit, and an unwavering resolution to tell the truth (“I must not tell lies”), Bornstein shares her story: from a nice Jewish boy growing up in New Jersey to a strappingly handsome lieutenant of the Church of Scientology’s Sea flagship vessel, and later to 1990s Seattle, where she becomes a rising star in the lesbian community. In between there are wives and lovers, heartbreak and triumph, bridges mended and broken, and a journey of self-discovery that will mesmerize readers.
The $60,000 Dog: My Life With Animals by Lauren Slater
From the time she is nine years old, biking to the farmland outside her suburban home, where she discovers a disquieting world of sleeping cows and a "Private Way" full of the wondrous and creepy creatures of the wild-spiders, deer, moles, chipmunks, and foxes-Lauren Slater finds in animals a refuge from her troubled life. As she matures, her attraction to animals strengthens and grows more complex and compelling even as her family is falling to pieces around her. Slater spends a summer at horse camp, where she witnesses the alternating horrific and loving behavior of her instructor toward the animals in her charge and comes to question the bond that so often develops between females and their equines. Slater's questions follow her to a foster family, her own parents no longer able to care for her. A pet raccoon, rescued from a hole in the wall, teaches her how to feel at home away from home. The two Shiba Inu puppies Slater adopts years later, against her husband's will, grow increasingly important to her as she ages and her family begins to grow.
The $60,000 Dog is Lauren Slater's intimate manifesto on the unique, invaluable, and often essential contributions animals make to our lives. As a psychologist, a reporter, an amateur naturalist, and above all an enormously gifted writer, she draws us into the stories of her passion for animals that are so much more than pets. She describes her intense love for the animals in her life without apology and argues, finally, that the works of Darwin and other evolutionary biologists prove that, when it comes to worth, animals are equal, and in some senses even superior, to human beings.
Written during the 1940s and early 1950s, when Baldwin was only in his twenties, the essays collected in Notes of a Native Son capture a view of black life and black thought at the dawn of the civil rights movement and as the movement slowly gained strength through the words of one of the most captivating essayists and foremost intellectuals of that era. Writing as an artist, activist, and social critic, Baldwin probes the complex condition of being black in America. With a keen eye, he examines everything from the significance of the protest novel to the motives and circumstances of the many black expatriates of the time, from his home in "The Harlem Ghetto" to a sobering "Journey to Atlanta."
Notes of a Native Son inaugurated Baldwin as one of the leading interpreters of the dramatic social changes erupting in the United States in the twentieth century, and many of his observations have proven almost prophetic. His criticism on topics such as the paternalism of white progressives or on his own friend Richard Wright's work is pointed and unabashed. He was also one of the few writing on race at the time who addressed the issue with a powerful mixture of outrage at the gross physical and political violence against black citizens and measured understanding of their oppressors, which helped awaken a white audience to the injustices under their noses. Naturally, this combination of brazen criticism and unconventional empathy for white readers won Baldwin as much condemnation as praise.
Notes is the book that established Baldwin's voice as a social critic, and it remains one of his most admired works. The essays collected here create a cohesive sketch of black America and reveal an intimate portrait of Baldwin's own search for identity as an artist, as a black man, and as an American.
Melanie Hoffert longs for her North Dakota childhood home, with its grain trucks and empty main streets. A land where she imagines standing at the bottom of the ancient lake that preceded the prairie: crop rows become the patterned sand ripples of the lake floor; trees are the large alien plants reaching for the light; and the sky is the water’s vast surface, reflecting the sun. Like most rural kids, she followed the out-migration pattern to a better life. The prairie is a hard place to stay—particularly if you are gay, and your home state is the last to know. For Hoffert, returning home has not been easy. When the farmers ask if she’s found a “fella,” rather than explain that—actually—she dates women, she stops breathing and changes the subject. Meanwhile, as time passes, her hometown continues to lose more buildings to decay, growing to resemble the mouth of an old woman missing teeth. This loss prompts Hoffert to take a break from the city and spend a harvest season at her family’s farm. While home, working alongside her dad in the shop and listening to her mom warn, “Honey, you do not want to be a farmer,” Hoffert meets the people of the prairie. Her stories about returning home and exploring abandoned towns are woven into a coming-of-age tale about falling in love, making peace with faith, and belonging to a place where neighbors are as close as blood but are often unable to share their deepest truths.
In this evocative memoir, Hoffert offers a deeply personal and poignant meditation on land and community, taking readers on a journey of self-acceptance and reconciliation.
Today's post is from Carole Joffe, author of Dispatches from the Abortion Wars: The Costs of Fanaticism to Doctors, Patients, and the Rest of Us. Joffe is a professor in the Bixby Center for Global Reproductive Health at the University of California, San Francisco (however, the views and opinions expressed here do not necessarily state or reflect those of the Regents of the University of California, UCSF, or the UCSF Medical Center). This post originally appeared at RHRealityCheck.
Here are some things that have occurred in the immediate aftermath of the tragic slaughter of children and their teachers in Newtown, Connecticut: More signatures on a petition calling for gun control than any other petition that has been sent to the White House; conservative politicians from both parties—for example senators Joe Manchin of W. Virginia, and Marco Rubio of Florida—for the first time signaling their willingness to do something about gun regulation; changing poll numbers about gun control among the general population, with support for stricter control at a ten-year high. And perhaps most significantly, total silence for several days about this incident from the National Rifle Association (NRA), considered to be the most powerful lobby in the United States.
These post-Newtown reactions have led numerous observers to feel that this latest mass murder incident may be a game changer. For years, many politicians have been fearful of offending the NRA and the public has been divided about guns, if not largely indifferent. As a result, there has not been a visible or highly effective gun control movement in this country, in spite of the hard work for many years of groups such as the Brady Campaign to Prevent Gun Violence. Correspondingly, there has been almost no Congressional legislative action to curtail guns during the Obama administration, and at the state level, there have been more efforts to expand gun owners’ prerogatives—for example, concealed carry laws—than to limit then.
To be sure, petitions and expressions of outrage by both politicians and the public do not necessarily lead to a social movement. Even if an assault weapons ban is passed—Senator Dianne Feinstein has pledged to introduce such legislation in January—that might be a one-off event (welcome as it would be), and politicians would then turn their attention to the many other issues on their plates. And recall that there was such a ban passed in 1994 during the Clinton presidency—and then that ban was allowed to quietly expire in 2004. That expiration is a textbook case of what happens when legislation is not accompanied by a vibrant social movement that is able to rally the public and to hold lawmakers accountable.
But let’s assume that the Newtown shootings do lead to a social movement with staying power. What could such a movement hope to accomplish? To answer this question, I find myself looking to the history of the anti-choice movement in this country. To put it mildly, I am no fan of this movement, but I do acknowledge its effectiveness in limiting access to abortion and stigmatizing the procedure. Both the current anti-chocie movement and a potential gun control movement share the feature of wanting to limit something that is legal but contested. As Robin Marty has wittily put it in a recent post, how do we make guns as difficult to get as an abortion?
Here are three pertinent lessons drawn from the forty years of anti-choice activity since the Roedecision. The first is the utility of a “chipping away” strategy. The antiabortion movement has thus far been unable to have Roe overturned, and with Obama’s re-election putting future Supreme Court nominees in his hands, this will be likely the case for the foreseeable future. Nevertheless, the hundreds of regulations passed by state legislatures over the years—the near-absolute restrictions on public funding, the “TRAP” laws that have demanded irrelevant and expensive physical upgrades to clinics, the waiting periods, the parental consent laws and so on—have made access to abortion care very cumbersome for providers, and often unmanageable for patients, especially the young and the poor. In short, Roe technically still stands, but for too many women unable to find and afford abortion care, this is a hollow victory.
Similarly, those gun control activists who would like to see an America where private gun ownership only minimally exists (as in Japan and a number of European countries) will never reach this goal, as a recent Supreme Court decision on the Second Amendment made clear. But a renewed gun control movement could chip away at this right. A ban on assault weapons and on gun magazines with huge amounts of ammunition capacity, higher prices and taxes for ammunition, limitations on the amount of guns and ammunition a person can buy in a given time period, far stricter enforcement of waiting periods and back-ground checks, and of course, serious efforts to keep guns out of the hands of the mentally ill are just some of the items under discussion that would accomplish such “chipping.”
Second, the anti-abortion movement over the years has effectively re-framed its rationale for opposing abortion from moralistic or religious reasons to matters of safety and a defense of the physical and mental health of women. “Abortion hurts women” is a prime example of this re-framing. Given that medical researchers have recently shown that American women are 14 times more likely to die in childbirth than from a first trimester abortion, and given that psychological experts have repeatedly debunked the claims of “post abortion syndrome” made by the antiabortion movement, this re-framing is hardly credible. But these arguments have been eagerly appropriated by anti-choice politicians to justify all sorts of restrictions.
Similarly, a gun control movement might consider framing its arguments against guns not only as matters of reducing crime and mayhem or simply the immorality of a society armed to the teeth—but also, with far more credibility than the above-mentioned anti-choice attempts, as a public health issue, as various clinicians and researchers have long urged. Treating gun violence through a public health lens implies, as with all public health campaigns, a focus on injury prevention and a necessity to regulate guns as consumer items that are dangerous. This framing also leads to the recognition of the burden that our country’s epidemic of gun violence puts on hospital emergency rooms, as well as the lasting costs of caring for people wounded by gunfire.
Finally, one of the most consequential activities of the anti-choice movement has been the stigmatizing of abortion, and especially the abortion provider. Providers have been relentlessly caricatured by the anti-choice movement as greedy, medically-inept and immoral. They also have been the target of unacceptable levels of violence and harassment by the militant wings of the movement. While most in the medical profession are themselves pro-choice and do not accept this portrayal of abortion providers, the controversy surrounding abortion has facilitated the marginality of abortion provision from the rest of the medical community.
For a gun control movement, a comparable strategy that suggests itself is to stigmatize certain kinds of gun ownership. For example, to cite a point currently offered even by some gun owners, why does any private citizen need an assault weapon? The prime targets for stigmatization, however, are the gun manufacturers and dealers, and organizations such as the NRA. These are the groups and individuals who directly profit from gun sales. They are the ones who most strongly resist any kind of regulation and who make little or no effort to screen the individuals to whom they sell dangerous weapons. It is these merchants of death that need to be held accountable for their role in not only the spectacular tragedies such as occurred at Newtown, but for the 88 individuals that die each day in the U.S. due to gun violence. In sum, the lesson that a gun control movement can learn from the anti-abortion experience is that effective action involves both legislative and cultural campaigns.
Similarities aside, there is one very important distinction to be drawn between these two movements. The anti-abortion movement has long tolerated an extremist wing that has murdered eight members of the abortion providing community and has terrified thousands of other providers and patients. The threat of intimidation and violence always hovers around the abortion issue, and explains a large part of the stigma and controversy in this field. Yet another function of this extremist wing is that it makes the rest of the movement and its demands more palatable. A gun control movement, by definition, could never tolerate such a violent flank. But in an ironic connection between these two groups, if a successful gun control movement does emerge in the United States, it may well recapture for Americans what it truly means to be “pro-life.”
Today's post is from Carole Joffe, author of Dispatches from the Abortion Wars: The Costs of Fanaticism to Doctors, Patients, and the Rest of Us. Joffe is a professor in the Bixby Center for Global Reproductive Health at the University of California, San Francisco (however, the views and opinions expressed here do not necessarily state or reflect those of the Regents of the University of California, UCSF, or the UCSF Medical Center). This post originally appeared at RHRealityCheck.
“So
we got in around 5:30 a.m., there is two inches of water in the surgery room,
water on the carpets, two offices totally soaked, water leaking in from our
large windows…we put out hundreds of towels and started mopping up… we started
seeing patients at ten a.m.”
Rose
Codding, director of Falls Church Healthcare Center, a Virginia clinic that
provides abortions and other reproductive health care services, is calmly
telling me about her and her staff’s response in the immediate aftermath of
Hurricane Sandy. These efforts were successful—the clinic did not close at all,
a tribute both to very careful planning and to the extraordinary dedication of
those who work in the abortion field.
FCHC was able to see patients on both
Monday and Tuesday, the days of the greatest disruption by Sandy in Virginia.
Of her staff of 11, all but two were able to make it to the clinic on those
days, despite quite challenging driving conditions. And half of that day’s
patients were able to reach the clinic as well on Monday and somewhat more on
Tuesday. (Those unable to keep their appointments were mainly women who
depended on public transportation, which was suspended).
Patients, according to Codding, were
surprised and grateful that the clinic was opened. Ironically, the storm in one
sense provided a benefit to the clinic’s patients—given that most workplaces
were shut down, these women did not have to take time off from work. The only
disgruntled patients were those scheduled for Tuesday abortions who had to make
their way to the clinic on Monday for their sonograms, mandated by the state to
take place at least 24 hours in advance of their procedure. “I can’t believe I
had to drive through the rain just for this!” was a not uncommon refrain.
It has finally stopped raining in
Virginia, and while things are getting somewhat easier, they are still not back
to normal. Codding, for example, has been dealing with the aftermath of soaked
carpets and the need to eliminate mold, which can cause a special risk to staff
and patients with asthma. And of course, she and her staff, who heroically rose
to the occasion for several days running and had to add heavy-duty cleanup to
their already crowded work lives, are tired.
The willingness of Rose Codding and the
staff of FCHC to go to such lengths to keep open in the face of natural
disasters mirrors other stories I have heard over the years—stories which speak
both to women’s determination to get their abortions, no matter what, and the
abortion-providing community’s attempt to accommodate these women. I recall
being told by the staff of a clinic in the Seattle area that when a rare earthquake in
the region destroyed half the clinic, women still showed up for their
scheduled abortions. I think of the efforts made by Southern abortion providers
to offer free procedures to victims of Hurricane Katrina who had to flee New
Orleans and thus miss their scheduled abortions. The willingness of FCHC staff
to rise at dawn and deal with their water-logged facility (when most other
workplaces in the region remained closed) reminds me of the efforts of the staff
some years ago at a West Palm Beach abortion clinic who worked
furiously at cleanup efforts after a firebombing, and who were able to reopen
the clinic in a remarkably short time.
Codding is of course proud of her
staff, and by extension, her field. “We always rise to the occasion. We are
dedicated to the profession, and to the women we serve. We just keep on keeping
on.” But she also puts the natural disaster of Hurricane Sandy in perspective,
and makes clear that she, as an abortion provider, faces greater challenges. “It’s
never been easy for the 30 years I have been doing this. A natural disaster at
least is something we can cope with and then it’s over.”
FCHC as a Virginia-based clinic has
been subject not only to protestors, but to relentless attacks by the Virginia
legislature, and is currently facing uncertainty over the fate of the notorious Ambulatory
Surgery Center measure passed by that body—which would require her
facility, which provides only first trimester procedures, to be regulated like
a hospital. Should the current version of the law be upheld, it is widely
agreed, FCHC and nearly all of Virginia’s other freestanding clinics would
close. The Virginia Health Commissioner has resigned
in protest against this blatant politicization of health-care
regulation. It speaks volumes about the current status of abortion care in the
United States that Hurricane Sandy’s impact is trivial next to that of a red
state legislature.
In honor of Independence Day, we asked author Carole Joffe (Dispatches from the Abortion Wars) what she'll be celebrating this July 4th.
Speaking as one whose professional and political life focuses on reproductive health services, there has lately been very little lately about which to feel celebratory. (An obvious exception of course-- the Supreme Court’s recent decision on health reform). Since the 2010 elections, there have been unprecedented, nonstop assaults by Congress and, especially, the states on both abortion and contraceptive services. Nevertheless, what I do feel both celebratory about, and deeply moved by, is the determined pushback shown by the defenders of these services: the more than a thousand who gathered outside the Virginia State House to protest new regulations on abortion, which had nothing to do with “women’s health” and everything to do with politics; the wonderful women legislators in Michigan who, joined by a joyful crowd of supporters, performed the “Vagina Monologues” at the state capitol, after being literally silenced by Republican leadership because they had dared to speak the word “vagina” while objecting to extreme abortion regulation; and “Pillimina,” the human sized birth control pill that Planned Parenthood has deployed to follow Mitt Romney –and remind voters of his rightward turn on contraception.
I celebrate also the indomitable spirit of the abortion providing community, who go to work each day, knowing that there are politicians ever searching for new ways to shut them down, and aggressive protestors who will attempt to intimidate them and their patients. Finally on this day, I celebrate the memory of Dr. George Tiller of Kansas, an abortion provider assassinated three years ago in his church by an extremist. As one of his former staff told me, Dr. Tiller was deeply patriotic, and took the Independence Day and its meaning to heart. One July fourth, in the midst of particularly grueling protests, Tiller and his staff flew a number of American flags at his clinic, and later mailed these flags to abortion providing colleagues across the country. With the flags, he enclosed a letter that said, as the staff person recollected, “We would be honored if you accepted this flag as a symbol of our journey together on the pathway of Justice, Liberty and Freedom.”
Carl Elliott is the author of White Coat, Black Hat: Adventures on the Dark Side of Medicine. Elliott is a professor at the Center for Bioethics at the University of Minnesota. His work has appeared in The New Yorker, Atlantic Monthly, the Believer, Slate, the London Review of Books, and theAmerican Prospect. His six previous books include Better Than Well, Prozac As a Way of Life, Rules of Insanity, and A Philosophical Disease.
In June, I will be returning to Washington for the annual Pharmed Out conference, a project located at Georgetown University Medical Center. It is one of my favorite events of the year, in part because of the wide array of academics, journalists, and activists who attend, but mainly because of its extraordinarily committed, outspoken director, Dr. Adriane Fugh-Berman, and her merry band of student volunteers. Adriane agreed to an interview by email.
Would it be fair to say that your project was funded by a felony?
Yes, we were funded by the Attorney General Consumer and Prescriber Grant program, a novel and never-to-be-repeated program that resulted from a settlement between Pfizer and all 50 states and the District of Columbia. We promised so much that before we got the grant, the grant administrators asked us to cut down what we promised to do. We refused — and in the end, we exceeded what we promised.
Just by chance, we had begun our project by shooting an interview of Shahram Ahari — a former drug rep for Eli Lilly who is now a medical student — talking about how he had sold Zyprexa. That was just days before the story broke in The New York Times about how Lilly hid data about adverse effects. Jim Ridgeway, the investigative reporter and filmmaker we worked with, realized that what we had was newsworthy and insisted that we release a quickly edited video clip. We didn’t even have a phone line yet, let alone a Web site. So we released the video on YouTube, crediting the not-yet-existing PharmedOut, with Georgetown’s media office as the contact number. It received a lot of media attention. The video “Zyprexa Drug Rep” has been viewed more than 150,000 times.
Since then, we’ve done novel research on, for example, promotional tone in medical journal articles, and how marketing messages are inserted into CME. We created the first educational module that has convinced physicians that they are personally affected by promotion. And we’ve had groundbreaking conferences, the third of which will be held at Georgetown on June 14-15. It’s called “Missing the Target: When Practitioners Harm More Than Heal,” and will cover the potential adverse effects of marketing drugs and medical devices.
How did you get started as an activist?
I came out of women’s health advocacy work, and we were fighting medicalization of childbirth, menopause, and menstruation, so I feel I always had that bent. Being a reformer suits my crabby nature.
I come from a family of utterly fearless women. I’m the most cautious, but apparently still less afraid than most. My parents were both anti-Vietnam war activists. My mother was very active with Women’s Strike for Peace, and met with Vietnamese women in Djakarta. My brother was president of SDS [Students for a Democratic Society] at Rutgers. I think I learned to walk at demonstrations.
I got involved in feminism, women’s health, worked at Planned Parenthood as a teen, then a reproductive health clinic as a counselor and medical assistant. I would sometimes ask docs to treat women who couldn’t afford care. I decided it would be easier to become a doc then beg docs to help people. Anyone who hasn’t been through medical training romanticizes medicine; med school and internship were so tough in unexpected ways.
I know exactly what you mean, but maybe you should explain.
Med school was anti-intellectual and inhumane. First there was the vast quantity of mind-numbing rote memorization of largely irrelevant material in the basic-science years, followed by the clinical years, in which we learned tradition, myth, and ritual. The overwhelming amount of material in the preclinical years makes students pine for shortcuts. No wonder they’re ripe for the simplistic, definitive messaging of drug reps later. Third year was one long hazing ritual; then in fourth year we were accepted into the fold. And in gratitude, we would accept and perpetuate the whole dehumanizing training system.
Questions were punished. Empathy for patients was discouraged. I was horrified that there seemed to be no connection between medicine and public health, and only a tenuous connection between medicine and science. (Whenever docs are caught out doing something nonscientific, they say, medicine is an art, not a science.) And only lip service was paid to the concept of patient autonomy, or making medical decisions in the context of a patient’s own life and values.
So when they removed your soul in medical school, did it hurt? I was under the impression that soul extraction was a pretty simple procedure, but to be honest, I found it excruciatingly painful.
Yeah, they need to work on the informed consent for that procedure.
I think all of us found ourselves doing things or thinking things we would not have imagined being capable of. Being deprived of sleep, food, and the company of loved ones is terrible for the soul. I remember reading an account of a hungry, exhausted intern who wolfed down the dinner of a patient who had just died. No physician would be proud of that, but we would all understand it. We need to change the training system. Physicians-in-training who are treated compassionately will treat their patients with compassion. Medical training is changing, but not fast enough.
Can you think of any particularly bad moments that seem emblematic to you?
The interns discussing how we envied patients because they were lying in bed and eating and watching TV. It’s terrible looking back on how distorted our thinking was. One of my internship mates ended up in a mental institution; another intern attempted suicide. Standing in a supply cabinet looking for a kit to cath someone who hadn’t peed in 18 hours and realizing, “Hey, I haven’t peed in 18 hours either.” On a psych rotation, handing out an account of a patient permanently damaged by electroconvulsive treatment to fellow students and having them hand it back, saying, “I don’t want to hear the other side if it involves more reading.” Being criticized for putting my arm around a pregnant teen on the way to the exam room. Realizing that preference in IV fluids or antibiotics varied by medical specialty as opposed to patient or disease characteristics. The utter exhaustion — falling asleep on a bus to my clinic for four hours, as the bus crisscrossed the Bronx. The guy I lived with didn’t make it home one night because he fell asleep on a dumpster at a subway station.
What about your writing? When did that start, and how?
I always wrote. I come from a family of writers and activists. Words were important. My father was a professor working on his fourth book on American government when he died at age 39. My mother wrote as well — a column for a small newspaper, letters to the editor. She would have written more had she not been left widowed and penniless with a nine-year-old and a 19-year-old. She never finished a cookbook she started, but my brother, a chef, later wrote one. I was made to write letters as a child, and my family wrote letters to each other. I remember coming home once to an eight page screed from my mother unfurling from a kitchen cabinet.
Anyway, my mother went into the restaurant business, which she ran like a social-service agency. She hired a busboy too damaged to speak, poor single mothers, a prostitute from Chinatown. She brought in chefs from China. Our restaurant launched many others in DC. She was so generous to everyone. We never had money, but we had lots of fun and ate like kings. Food, in my family, was the most important thing. My grandmother believed you should be able to recreate any dish you taste. Not that she deigned to make much non-Chinese food. She did make a great apple pie, from sour, quarter-size apples from a tree in her backyard. I didn’t realize that she had learned to make apple pie in some YWCA American acculturation course she took after coming to the U.S.. As a child I thought apple pie was a Chinese dish. The day my grandmother made a bad dish was the day we knew she was dying.
How have you managed to keep Pharmed Out going?
Those of us who started the project came out of nonprofit groups so we knew how to work crazy hours, convince volunteers to work harder for free than they ever worked for pay, and stretch a penny until it screams. We have an incredibly smart, savvy, responsive, creative team.
Our strength has always been the industry insiders who have provided us invaluable information on marketing practice, and the utter dedication of the doctors, scientists, students, artists and all the individual donors — who have kept the project going despite our having no external funding support since 2008. Every single person whom I paid off the initial grant continued to volunteer for the project after the money ran out. Our Web master supported the site for years; every academic stayed on. Even our work-study student continued to work for free after our funds ran out. Our fabulous anonymous team is what makes this project great. Because so many team members — not just industry — must remain anonymous, we made a decision not to name those team members who could be named. Our staff has been phenomenal. Alicia Bell, now a med student at the Medical College of Virginia, was the founding staff-person who became an amazing colleague over our first four years; without her we would not have achieved the impact we did. Beth Johnson and Nicole Dubowitz have also been great. But every one of our projects is a team effort. As director, I get way too much credit. I have a brilliant, efficient team that reminds me often of one of my mother’s favorite quotes: “The difficult with ease, the impossible with time.”
Today's post is from Carole Joffe, author of Dispatches from the Abortion Wars: The Costs of Fanaticism to Doctors, Patients, and the Rest of Us. Joffe is a professor in the Bixby Center for Global Reproductive Health at the University of California, San Francisco (however, the views and opinions expressed here do not necessarily state or reflect those of the Regents of the University of California, UCSF, or the UCSF Medical Center). This post originally appeared at RHRealityCheck.
“…there is now an unprecedented and sweeping legal assault on women’s reproductive rights. New legislation is being introduced, and sometimes passed, in state after state that would roll back access to abortion and contraception, mainly by intruding on the relationship between doctor and patient…..But where are the doctors? They have been strangely silent about this legal assault, even though it directly interferes with medical practice.”
The above statement is important not just because of the insightful words being said, but because of who is writing these words, and where these words are published. The writers are Marcia Angell and Michael Greene, and the piece they wrote on current abortion restrictions appears in USA Today, the newspaper with the largest circulation in the United States. Dr. Angell, a senior lecturer at Harvard Medical School, is the former editor-in-chief of the New England Journal of Medicine; Dr. Greene is professor of obstetrics, gynecology and reproductive biology at Harvard Medical School and chief of obstetrics at Massachusetts General Hospital.
Why do the credentials of the writers, and the place of publication, matter? The significance of these issues becomes clear if one takes into account the longstanding marginalization of abortion — and abortion providers — in the United States. As I learned in researching a book on the first generation of doctors who provided abortion after Roe v Wade, these pioneers acutely felt their isolation from mainstream medicine. Most hospitals did not establish abortion services, most professional organizations did not set guidelines for abortion care, very little training of residents in abortion procedures was taking place, and many individual providers told me of sanctions they experienced because of their involvement with the abortion issue. I heard numerous stories of academic advancement denied, difficulty in getting research published, but perhaps most poignant of all, the lack of colleague-ship they felt with their fellow physicians. As I speculated, the memories of the “back alley abortionists” were still so strong in the period immediately after Roe that even ethical and competent doctors, such as those I interviewed, were tainted with that legacy. In short, a majority of physicians then (as now) have supported legal abortion — but there was less support for the abortion provider.
To be sure, much has changed for the better since 1973 in U.S. medicine with respect to abortion. The number of training sites has considerably improved; such technological developments as medication abortion (formerly known as RU-486) and an improved device for Manual Vacuum Aspiration have brought many primary care doctors and, where legally permitted, nurse practitioners, midwives and physician assistants to offer early abortion care; perhaps most importantly, organizations such as Medical Students for Choice and PRCH (Physicians for Reproductive Choice in Health) have facilitated collegial contact between numerous clinicians who go on to become abortion providers, or who are already doing so, and clinicians in other fields who, while not performing abortions themselves, firmly support those who do.
However, while the stigma surrounding abortion within medicine may have lessened, in the larger society it has only worsened — as we see from the unprecedented number, and character, of the restrictions proposed in the last year and a half. In fact numerous states even mandate that abortion patients be told misleading or downright untrue facts, such as the links between abortion and breast cancer or infertility — while a number of states have passed, or are proposing, laws that shield doctors from lawsuits if they withhold accurate information, such as the results of prenatal diagnosis that might lead a pregnant woman to seek an abortion.
Back to the forceful statement by Drs. Angell and Greene. They are not the only voices within medicine to object to these egregious measures. The Pennsylvania Medical Society and the Wisconsin Medical Society, for example, are on record as opposing restrictive laws in those states because they interfere with the doctor-patient relationship. Dr. Pippa Abston, a pediatrician in Alabama, has become an outspoken critic of Alabama's mandated ultrasound law, speaking at rallies and making a video of her opposition, and others have voiced objection as well. But given the cultural stigma that now surrounds abortion, the fact of two high profile physicians at one of the country’s leading medical institutions, speaking out in such a widely read newspaper, is a particularly welcome blow against the legislative persecution of abortion providers. To me, it is especially encouraging, given the past marginalization of this field that I have described, that the two physician-writers have not themselves built careers around abortion.
Angell and Greene mince no words in denouncing the assault on medical ethics that such laws represent, and make clear their understanding that the stakes in these battles go well beyond abortion care. “Physicians…have ethical commitments to patients that they cannot and should not be required by state law to set aside. Prominent among them is the responsibility to place the welfare of their patients above all other considerations.” But their statement does not only call for the proper treatment for patients. They end their piece with a call for the relevant medical professional organizations — too timid till now, in their view — to support their members who are caught in this war on those who serve women.
A couple of years ago, Beacon Press published White Coat, Black Hat: Adventures on the Dark Side of Medicine, a book that Lauren Slater recommended as "required reading for anyone who has ever been a patient—in other words, for everyone." In WCBH, author Carl Elliott skewers drug-industry reps, exposes how Pharma companies ghost-write "scientific" research studies in support of their products, and introduces us to the world of human guinea pigging--a "career" path for those desperate enough to serve in drug study after drug study in exchange for mediocre pay and few benefits.
Carl sent me an email this week to tell me he had just returned from the Tribeca Film Festival, where he had attended screenings of Off Label, a new film "for which my writing is given credit as the inspiration." He put me in touch with filmmakers Michael Palmieri and Donal Mosher, and I spoke with them via Skype as they were getting ready to leave New York. If you're familiar with WCBH and Carl's other writing in The New Yorker, Mother Jones, The Chronicle's Brainstorm blog, and elsewhere (including Beacon Broadside), you will certainly recognize the themes and people in the film. If you haven't read the book yet, get to it! And keep an eye out for screenings of Off Label. --Jessie Bennett, Blog Editor
Jessie Bennett: What is Off Label about?
Michael Palmieri: It's a film that examines the medicated margins of American society, and it does that initially through human guinea pigs. But it's personal stories of these people, so we're interested in the personal ramifications of the pharmaceutical culture that we live in, and how we're all sort of implicated in that process.
JB: How did you come to make a film about human guinea pigging?
MP: We were showing a rough cut of our first film, October Country, at a film festival in late 2008, and these two producers--Anish Savjani and Vincent Savino, who we ended up working with--they saw the film and they followed up with us and said, "Hey, would you guys be interested in making a film about human guinea pigs? " And we said, "Yeah, sure, maybe. It sounds interesting..."
Donal Mosher: And they said they had money.
MP: Yeah, they said they had money, and we said, "Okay, sure!" They actually did have a budget to make it, and it was an intriguing subject, but we didn't know if it could become a whole film. It seemed to us initially like a 60 Minutes-length, investigative reporting piece more than what we're interested in doing, which is a broader view of a subject or a viewing from sort of left field. But the first articles they showed us were Josh McHugh from Wired magazine ["Drug Test Cowboys: The Secret World of Pharmaceutical Trial Subjects"] as well as Carl's article called "Guinea-Pigging" [The New Yorker], which we really latched on to. We really liked the way he wrote the piece. So we ended up contacting him and discussing what we were doing, and he gave us more leads, more information. We eventually ended up meeting him. It kind of developed organically from there. "Guinea pigs" was the initial interest, but then we expanded the idea once we understood on a deeper level what was going on that was somewhat suspect in the guinea pigging world. If the testing is messed up, then what's messed up about the marketing? And what are the end results?
DM: We also began to see how the issue didn't just lie in the zone of the issue itself, but it was pervasive. Every time we'd have a conversation with someone, they had a relative or they themselves were on pharmaceuticals. And the stories were multiplying in a way that made us think this is an issue that pervades many layers of culture far beyond medicine or taking medicine itself. So we wanted to start working those ideas into the film.
JB: Who were some of the subjects that you spoke with? I recognized a few of the characters from Carl's writing.
DM: Originally we spoke with Bob Helms [of Guinea Pig Zero]. A lot of the well-known names in the human guinea pig scene, the people who are testing the drugs. And then from there, we moved on to Mary Weiss, who is also in Carl's writing.
MP: Robert Helms was in the original article that Carl wrote for the New Yorker. So we contacted him and spent time with him, and while we were in Philadelphia, Donal had initiated contact with a writer who had written a book called Acres of Skin, which gave us Eddie Anthony's story. He was an inmate in a prison at Holmesburg when it was actually legal to conduct medical testing on prisoners. And it really screwed up his life because some rough tests occurred when he was in there. We had initiated contact with Paul Clough through his website [Just Another Lab Rat]. Paul is based in Austin, but he has a website very much like what Robert Helms has with his fan zine Guinea Pig Zero, set up for people in the guinea pigging community to speak with one another and share. "Oh, this test actually pays good money." "These people have terrible food." It's kind of amazing, because these people are doing this for a living.
JB: This is the thing that really shocked me about White Coat, Black Hat. "There's a human guinea pigging community?"
MP: And beyond that, it's a community of people who have no... there's no health plan for them. They're doing this because they don't have any other option. But for us, we could clearly understand that the testing is somewhat dubious on certain levels. I mean, obviously we need tests, there's a lot of positive, real things that come out of that testing. But people are lying to get into studies, and it's not exactly as clean of a population study as you would think it is. So the results are going to be skewed. Once we saw, "Okay, skewed results," we started moving more towards marketing, and we were introduced to [former pharmaceutical representative] Michael Oldani, through Carl. Again. Which is why, in a certain sense... how did we say it now? Not dedicated...
DM: "Inspired by."
MP: The film is truly inspired by Carl's writing. It's not just the characters that he led us towards, of which I think he led us toward five of the eight characters. But it's the endless numbers of hours spent with him in Minneapolis. At a coffee shop, where we would meet to discuss something, and we'd look at our watches and eight hours had passed. It's the types of conversations you dream to have all the time. We just got to know each other really well, and his style of writing is so expansive, and it moves from one idea to the next idea. He's such a big brain on a stick, you know what I mean? We wanted to try to do something like that with this film, that followed a line of reasoning as opposed to a specific plot. As a means to take in all of the complications of the issue that we were examining. But rather than having it point a finger at pharma and say, "This is the bad guy, and this is the problem." Which is the "call to action" documentary. We wanted to make a film that was a call to reflection, which is what Carl's writing is like, or the feeling at least that we got from it.
JB: Mary Weiss, the mother of the test subject who died in Minnesota, who Carl writes about in WCBH, is featured in the film. Can you tell us about her story?
DM: In short, she attempted to get her son into a mental hospital. And when she couldn't, she found him space at the University of Minnesota. At first, he was assessed that he couldn't make any rational judgment about his own medication--that he wasn't sane enough. And then, within twenty-four hours, that was reversed. The full details of the story are in an article that Carl wrote for Mother Jones, but essentially it was a doctor who placed his own psychiatric patient in a very lucrative testing study. Not a study testing the efficacy of the drug that was prescribed for this young man, but a comparison marketing study where the dosage was fluctuating. The result was an incredibly sad and grisly suicide. From that point on, his mother has been fighting to change Minnesota laws, and to make those changes nationally.
MP: And to clarify, this happened at the University of Minnesota, where Carl works. And the study that Dan Markingson was entered into was not only a marketing study, but it was a study that was conducted by the same doctor who was his attending physician. So the conflict of interest was so obvious in this case, but it was still legal. So Mary Weiss has helped pass the law to make that illegal.
JB: You just finished up at the Tribeca Film Festival. How did it go?
MP: It went great. We showed the film four times. We finished yesterday, and the screenings were all pretty full. Carl was there for the first two screenings, with a couple of other people from the film. We are kind of thrilled with the response. It's gotten some fantasticreviews as well. So we're really happy.
JB: How was the audience reaction to the film in Tribeca?
MP: I usually read it from the perspective of, "How many people left during the credits who didn't want to stick around for the Q&A?" An overwhelming number of people stuck around, which was a good sign to begin with, but the questions, they kept coming until they had to kick us out of the theater. So people are, I think, really engaged with the film. Everyone seems to be invested, so we're really happy. And if it causes people to pause and think about what medicine is going inside their bodies, I think we have succeeded, at least on that level, and it makes us very happy.
JB: And where are you headed next?
MP: We're headed to HotDocs in Toronto, where the film is premiering internationally. The Toronto documentary crowd is insanity. We've already sold out most of our screenings, and they're gigantic places. We're looking forward to that. And we're hoping that there's a lot of European interest in screening the film.
JB: Well, it's an international issue.
MP: But it's a very American film, so we're curious to how Europe responds.
DM: We're really curious to see, when there's an international audience, what stories they give us about the situation in whatever country the film might land.
JB: And you have a screening in San Francisco as well?
Below is a an interview with Reverend Rebecca Turner of Faith Aloud, conducted by Carole Joffe, author of Dispatches from the Abortion Wars and professor at the Bixby Center for Global Reproductive Health at the University of California, San Francisco. Faith Aloud is a pro-choice religious organization which seeks to eliminate the stigma associated with abortion and sexuality, and to provide support to both women and providers.
“Today we pray for women for whom pregnancy is not good news, that they know they have choices.”
“Today we pray for the men in our lives, that they may offer their loving kindness and support for women’s difficult decisions.”
“Today we pray for Christians everywhere to embrace the loving model of Jesus in the way he refused to shame women.”
Above are some of the individual components of the 40 Days of Prayer, a series composed by the Rev. Rebecca Turner, a United Church of Christ minister, and the head of Faith Aloud, a pro-choice religious organization based in St. Louis, Missouri. Turner originally wrote these prayers to counter religious-based protests against women's rights to choose abortion. For some years, the “40 Days of Prayer” were used in various ways by clinics but ignored by the anti-choice movement. However, recently when a clinic in northern California reprinted the prayers in a brochure, the movement took notice, and Turner’s prayers—and by extension, the concept of a religiously-based prochoice group—drew much attention from the religious right, including interviews by Fox News and Focus on the Family, and follow up stories in various anti-choice publications.
Below is an interview I conducted with Rev. Turner about her organization, the 40 Days of Prayer, and the reactions of opponents of abortion when news of her activities went viral.
What is Faith Aloud?
Faith Aloud is an interfaith nonprofit organization with a history of 30 years of pro-choice activism. Our mission is to eliminate the religious stigma of abortion and sexuality. We train clergy to talk to women about their pregnancy choices and we receive calls from women all over the country as well as internationally. We also provide spiritual resources for abortion clinics to use to help their religious patients.
Most women in the US identify as religious, and those seeking abortion are no different. Our resources, created by clergy of several faith groups, offer support to women during times of distress.
Why did you write the 40 Days of Prayer?
I wrote some prayers and offered them to abortion providers to use whenever and however they wanted to. We've since made a full poster of the prayers that is on the walls in many clinics across the country. We were angered by the swarms of protesters that regularly took siege of abortion clinics and would hurl hateful remarks at the women arriving. As a Christian minister, I was especially angered that most of these protesters who were so hateful and judgmental actually call themselves Christian. I wanted women to know that many Christians are compassionate and supportive, and to help them find strength in their religious faith instead of condemnation.
I also wanted to give spiritual support to the other people [affected] by the daily barrage of hate -- the clinic staff and escorts. Few people know what they go through every day because of their dedication to women. And few people understand that many of them-doctors, counselors, administrators-are deeply religious people themselves who have often felt rejected by their faith communities. This is wrong. I feel that I am a pastor to many of the abortion providers who use our services. Religious faith should give us strength and confidence, not guilt and shame. I have never understood why anyone would support a religion that shames and judges and ridicules its own members. That is abusive behavior and should not be tolerated in any setting.
Tell more about your mindset as you wrote the prayers.
I wrote all of the prayers in one day. I thought about women's reproductive lives, the difficulties of being female, the choices we make, the relationships we have, the various people who work with pregnant women, and I prayed for them all. Many websites are claiming that we're praying for more abortions, which is silly. They can read the prayers and see that isn't the case. Most of the prayers are really all about women and their reproductive lives. We pray for gender discrimination to cease. We pray for women who are abused. We pray for women who are infertile. We pray for women to have confidence. How can they be upset by this? Really I think the only objection to these prayers comes from a deep misogyny that refuses to acknowledge women as autonomous beings with their own spiritual lives.
How would you characterize the main reactions you have received since this flurry of publicity?
The media to date has been from anti-choice groups, so most of the people calling and writing to us are their constituents. They are quite hostile, usually rambling, callers are often screaming. They accuse us of pretending to be ministers or Christians. They accuse us of baby-murdering. Emails quote a lot of scripture and tell us we're going to burn in hell. We have had some new supporters find us through this, though. And we've begun a campaign called "Hate-into-Love" which allows our supporters to pledge donations for each hostile contact we receive.
Why do you think the 40 Days of Prayer has hit such a nerve with the Right, once they became aware of it?
They claim they think it's a mockery of the 40 days for Life campaign, but I don't think there is any mockery in it. The prayers are quite sincere. Apparently the religious right does not believe that anyone is allowed to pray except those who believe as they do. This is not a biblical idea; it is pure arrogance. The Christian scriptures say "Judge not, lest you be judged" and yet these people want to judge us as "fake" or "delusional" or even "possessed." One person who called us after the news broke asked "Are you planning to get groups of people to rally at abortion clinics to pray your prayers?" My answer was "The people inside the clinics are praying every day." Prayer does not belong to one group of people. But this seems to be the source of the outrage, that we dare to pray. It is apparently a very scary proposition to them that women might hear a compassionate religious voice and feel strengthened instead of weakened.
What have reactions to this campaign been in the pro-choice community?
A few pro-choice [organizations] have helped to pass along the information about our "Hate-into-Love" campaign and have re-posted the stories. We're getting pledges from around the country. We've been gaining a lot of new Facebook friends [who] learned about us through the negative media.
Do you think this community is more open now than in the past to a religious presence, such as that offered by Faith Aloud?
The independent abortion provider community has always been very welcoming of spirituality, seeing it as an important part of a woman's life and her decisions. But there is an element of the pro-choice community that is less supportive, seeing religion as the problem rather than a part of the solution, and really I can't blame them for feeling that way. They've been threatened and attacked and shamed by religious zealots. But, as I mentioned, most of the women in the United States call themselves religious or spiritual, and so we need to help them use their faith for strength during difficulty. It shouldn't be about we need, but what women need making difficult decisions.
In the several days that news of the “40 Days of Prayer” has gone viral, you have received much hate mail. Have you received anything from any anti-choice individual or group that suggests some common ground?
No. The hate mail tends to fall into these camps "You have no right to call yourself a Christian or pray" or "I'm praying for God's vengeance on you." We're getting some love mail, too, with people finding us for the first time and saying thank you for being a religious voice of compassion and reason.
“The author’s clear rending of the tough questions surrounding this knotty topic should make it required reading for anyone touched by this issue.” Kirkus Reviews
Over the last two decades, we have seen a dramatic spike in young people taking psychiatric medication. As new drugs have come on the market and diagnoses have proliferated, prescriptions have increased many times over. The issue has sparked heated debates, with most arguments breaking down into predictable pro-med advocacy or anti-med jeremiads. Yet, we've heard little from the "medicated kids" themselves.
In Dosed,Kaitlin Bell Barnett, who began taking antidepressants as a teenager, takes a nuanced look at the issue as she weaves together stories from members of this "medication generation," exploring how drugs informed their experiences at home, in school, and with the mental health professions.
For many, taking meds has proved more complicated than merely popping a pill. The questions we all ask growing up-"Who am I?" and "What can I achieve?"-take on extra layers of complexity for kids who spend their formative years on medication. As Barnett shows, parents' fears that "labeling" kids will hurt their self-esteem means that many young children don't understand why they take pills at all, or what the drugs are supposed to accomplish. Teens must try to figure out whether intense emotions and risk-taking behaviors fall within the spectrum of normal adolescent angst, or whether they represent new symptoms or drug side effects. Young adults negotiate schoolwork, relationships, and the workplace, while struggling to find the right medication, dealing with breakdowns and relapses, and trying to decide whether they still need pharmaceutical treatment at all. And for some young people, what seemed like a quick fix turns into a saga of different diagnoses, symptoms, and a changing cocktail of medications.
The results of what one psychopharmacologist describes as a "giant, uncontrolled experiment" are just starting to trickle in. Barnett shows that a lack of ready answers and guidance has often proven extremely difficult for these young people as they transition from childhood to adolescence and now to adulthood. With its in-depth accounts of individual experiences combined with sociological and scientific context, Dosed provides a much-needed road map for patients, friends, parents, and those in the helping professions trying to navigate the complicated terrain of growing up on meds.
Kaitlin Bell Barnett is a journalist and blogger based in Brooklyn. She also blogs about the experiences of young people taking psychiatric drugs at PsychCentral.
Her work has appeared in the New York Observer, Parents, the Huffington Post, Berkshire Living, Gastronomica, Prevention, InTheFray, Hungry, the Brooklyn Rail, and the Boston Globe, among other publications.
Kaitlin grew up in Williamstown, Massachusetts, and attended Columbia Journalism School and Dartmouth College, where she served as executive editor of the independent daily student newspaper. From 2005 to 2007, she worked as a reporter at the Monitor, a daily newspaper in McAllen, Texas, on the Mexico border. There, she covered city government, politics, schools, crime and general assignments.
Kaitlin Bell Barnett is the author of Dosed: The Medication Generation Grows Up. She is a freelance writer whose articles have appeared in numerous national and regional outlets, including the Boston Globe, New York Observer, Parents, and Prevention. This piece originally appeared at Huffington Post.
Journalists love declaring that psychiatric medications symbolize some slice of the zeitgeist. So I can't say I was entirely surprised when I opened my mailbox the other day and saw New York magazine's cover article proclaiming that "If the 90s were the decade of Prozac, all hollow-eyed and depressed, then this is the era of Xanax, all jumpy and edgy and short of breath."
Translation: Depression is out, anxiety is in, antidepressants are passé (Statistics showing continued robust usage be damned), and anti-anxiety benzodiazepines, around since the 60s, are trendy again, the perfect no-commitment chill pills for a nation of "panicked strivers" contending with a new age of anxiety but without time or inclination to commit to actually changing their lives or going to therapy.
How convenient, I thought. My psychiatric problems -- and corresponding psychopharmaceuticals -- match up with the trends! First I was depressed and angsty and got Prozac, then I got anxious and got benzos! Of course, I happen to be getting depressed again lately, but one can't be completely on-trend all the time.
In fact, if you didn't know me better, you might well mistake me for one of the "functionally anxious" types who dominate journalist Lisa Miller's New York story, rather than the sort of person she quickly shuffles off into another category altogether -- the people with an actual, you know, anxiety disorder.
The people without anxiety disorders who do populate the New York piece are the sort most of us love to hate, but also can't resist reading about in these sorts of articles: Manhattanite professionals who in the Annie Hall era would have been called "neurotic" but who now like to describe themselves as "super stressed," like it's a badge of honor.
According to the article, they're turning more often these days to drugs like Xanax or Ativan when anxiety from their legitimately high-pressure lives gets to be too much. Prescriptions of these drugs, collectively referred to as benzodiazepines, are up 17 percent since 2006. The article does not mention that prescriptions for other psychiatric medications have increased, too -- antidepressant use in adults grew nearly 30 percent between 2001 and 2010 at Medco, one of the nation's largest pharmacy systems, and atypical antipsychotic usage grew a staggering 350 percent. Writing the New York article with a different thesis in mind, one could contend that we're all demoralized over the stalled economic recovery and turning to antidepressants -- or that we're frustrated and adding antipsychotics to our antidepressant regimens to give them a boost.
But back to benzos and anxiety.
The article makes it sound as though it's terribly easy to distinguish between the ordinary, high-functioning people who turn to benzos every so often when the stress of their lives overwhelms them and the people with diagnosed anxiety disorders. In fact, it can be quite complicated -- and that's why psychiatrists are fighting so bitterly over the definitions of the various disorders to be included in the DSM-5, the profession's diagnostic manual, which is under revision and due out in May 2013.
Doctors are curiously absent from the New York piece, though they are, of course, the ones responsible for actually doling out the prescriptions for benzos and all other drugs. They are quite rightly very concerned about how to determine which anxiety is pathological and overwhelming and warrants such a drug, and which kind might be better dealt with through other means.
This is a subject that has been troubling the medical profession for decades, In the 70s and 80s, benzodiazepine misuse became enough of a public health problem to prompt doctors to cut down on prescribing -- and publish a lot of anguished articles on the subject in medical journals. Some of the increase in use the New York article discusses may even reflect a return in doctor's attitudes to more comfort prescribing the drugs after years of shying away from them. (Recent articles in trade publications have made a case for their judicious use.)
All this difficulty distinguishing the casual users from the truly stricken lies in the nature of the conditions for which benzos are typically prescribed. Although sometimes given in high doses as sedatives to seriously agitated patients in psychiatric hospital settings, they are more commonly given to people whose anxiety is self-described and not necessarily readily observable to the doctor. This is true even when we are talking about anxiety of the sort that impairs people's day-to-day functioning, as opposed to the kind Miller focuses on in her New York article, which we might call the "just as easily dispatched with a glass of wine variety."
Anxiety is a funny thing, because although it seems the most all-consuming and obvious thing in the world when you are experiencing it, in fact it's actually quite difficult to detect. When I've been at my most anxious, I suspect that I've struck my psychiatrists and therapists as, at most, a bit agitated. Perhaps they've noticed some circles under my eyes, or that I look a little thin. Conceivably, I would talk a little faster than usual, or my eyes would dart around the room. But they have told me that, frankly, I don't seem all that different. I put on a good façade of normality.
In contrast, here is what I do experience: When I arrive at the psychiatrist for a "med check," I won't have slept a solid eight hours in weeks. I will have awoken early every morning with a jolt, my heart racing at some threat I can't place. It will continue that way all day until I go to bed. My stomach will churn and the room will spin and I'll be unable to eat. My thoughts will race from one unarticulated worry to another. I will feel desperate for companionship yet unable to listen or focus on conversation. I will feel constantly on the verge of tears. But I would have to tell my doctor all of this. She is not likely to go offering me a benzodiazepine prescription on the basis of some dark circles and a little hurried speech.
Once procured, such a prescription usually works magic, however. During the three periods of sustained anxiety I've suffered, I have taken a small dose of Klonopin, a long-lasting benzo, every few hours, as a way of keeping a steady level in my system. I've also taken it many other times when I've felt my anxiety flare on isolated occasions.
Despite the drug's effectiveness -- or perhaps because of it -- I never feel good about taking it. When my anxiety is pervasive, I need to constantly watch for a resurgence of panic. This makes me feel dependent, like a drug addict eyeing the clock for my next hit. When my anxiety returns in isolated episodes, I wonder if I'm simply the equivalent of the functionally anxious people in the New York article -- someone who happens to have a Klonopin prescription but who really doesn't need to be taking it and could just as well go to a yoga class. I tend to feel guilty about it until I get the telltale early morning waking -- and then I start to worry that I'm entering another terrible extended anxious phase.
The other reason articles like the one in New York make me cringe is that benzos, being controlled substances, already carry the taint of misuse, and talk of overworked PR execs popping pills to deal with anxiety over a work presentation or helicopter moms doing so to handle separation anxiety from their preschoolers is likely to make doctors, already cagey about prescribing, even more so.
Even for those of us with an anxiety disorder diagnosis and a history of benzo prescriptions, there's already an awkward dance involved in procuring a refill. Since benzos are controlled substances, doctors can't call in prescriptions (and may not have emergency appointments available go hand over the precious slip of paper). Anxiety, however, has a tendency to spiral -- and quickly. Many people find it useful, therefore, to have a bottle around in case of an emergency. But that means requesting a refill when you are not, technically, quaking under the covers in a fetal position.
Some doctors are sensitive enough to realize this, but, wanting to avoid tolerance and misuse, the responsible ones generally don't go around offering up refills out of the blue. For many people, especially young people in their 20s and 30s, who happen to be the group most likely to abuse psychotherapeutic prescription drugs according to federal government statistics, this makes asking for refills a delicate and awkward affair. I'm sure that my requests, for example, are accompanied by far too much justifying. One young woman I interviewed for my book on the topic of growing up on psychiatric medication suffered from debilitating anxiety and was so terrified of being judged an addict (She had a family history of alcohol abuse) that she refused to ask for benzo refills at all. This, even though it was patently obvious from the most casual encounter with her that some benzos would have done her good.
After my last psychiatrist's appointment, during which my doctor upped the dosage of my antidepressant to deal with a creeping recurrence of my depression, she ended the appointment by asking what I was doing for the rest of the day. I told her I was working on a column responding to the apparent news that benzodiazepines were the hot new drugs. She rolled her eyes as though this were the height of ridiculousness. "Benzodiazepines are the hot new drugs? Since when?" She did not ask if I would like a refill on my Klonopin.
Carl Elliott is the author of White Coat, Black Hat: Adventures on the Dark Side of Medicine. Elliott is a professor at the Center for Bioethics at the University of Minnesota. His work has appeared in The New Yorker, Atlantic Monthly, the Believer, Slate, the London Review of Books, and the American Prospect. His six previous books include Better Than Well, Prozac As a Way of Life, Rules of Insanity, and A Philosophical Disease.
If Texas ever decides to secede from the Union, I’d be mighty tempted to go along. Lightnin’ Hopkins, Molly Ivins, Bob Wills, Kinky Friedman, the 1966 Texas Western basketball team: Without the Lone Star State, American life would look pretty anemic. When Steve Earle declared, “Townes Van Zandt is the best songwriter in the whole world and I’ll stand on Bob Dylan’s coffee table in my cowboy boots and say that,” I nodded and said, “Amen.”
Most of all, I like Texas crazy. There is no better value for your entertainment dollar. As a native South Carolinian, I claim some expertise in the topic. My brother says: What Mississippi is to the poverty index, South Carolina is to the index of crazy people. (Our unofficial state motto, provided by James L. Petigru in 1860: “South Carolina is too small to be a republic, and too large to be an insane asylum.”) For many years now, my Texan friend Kathryn Montgomery and I have had a contest over which state has a higher proportion of crazy people, and for many years, thanks to our remarkable politicians, South Carolina has been flat-out killing it. Over the last few months, however, Texas may have pulled ahead.
The reason is stem-cell tourism. It started when Gov. Rick Perry had a surgeon friend treat his back problems with adult stem cells processed by RNL Bio, a South Korean company famous mainly for its commercial puppy cloning business and “cosmeceutical” preparations such as Dr. Jucre’s Million Stem Cell Magic Concentrate (available online for $1,220.) Pretty soon an entire stem-cell operation called Celltex Therapeutics was up and running, partnered with RNL Bio and backed by a group of Texas oil and gas investors. Unfortunately for the company, there has been a minor bump in the road called “medical research.” Reputable stem cell researchers say there is little medical evidence to show that adult stem cells are effective for the conditions they are supposed to treat (which, according to a RNL Bio spokesperson, range from wrinkles to Alzheimer’s disease). Even worse, the cells may be dangerous. As Paul Knoepfler, a stem cell researcher at UC Davis pointed out recently, “The worst case scenario, even for autologous transplant, is death. The second worse case scenario is severe, life-changing injury.”
You don’t need a marketing degree to understand that “death” and “severe, life-changing injury” are not going to sell a lot of stem cells. So those words don’t appear in the patient testimonials RNL Bio uses to market its services. In fact, the stem cell treatments are illegal in South Korea, where RNL Bio is based, so the company partners with facilities in other countries such as China and Japan to exploit regulatory loopholes. Patients with debilitating chronic illnesses can travel to those countries for stem-cell treatment. Last week, we learned from Nature that Texas has joined that list of countries. A Houston doctor told a Nature reporter that he is paid by Celltex to give adult stem-cell treatments to patients with multiple sclerosis and Parkinson’s disease, who may be charged up to $25,000.
A few months ago, I had reason to hope that South Carolina might be making a comeback in the craziness sweepstakes. An assistant professor at the Medical University of South Carolina was arrested by the FBI for supplying adult stem cells to an illegal operation in Mexico. But my hopes fell when I read the FBI press release. His co-conspirators, unfortunately, were from Texas.
Carl Elliott is the author of White Coat, Black Hat: Adventures on the Dark Side of Medicine. Elliott is a professor at the Center for Bioethics at the University of Minnesota. His work has appeared in The New Yorker, Atlantic Monthly, the Believer, Slate, the London Review of Books, and the American Prospect. His six previous books include Better Than Well, Prozac As a Way of Life, Rules of Insanity, and A Philosophical Disease.
The pharmaceutical industry gets a bad rap. To listen to the critics you’d think pharmaceutical companies are in the same sleazy category as oil, finance and tobacco companies. But pharmaceutical companies invent life-saving medications, not to mention countless other psychoactive products that many of us enjoy on a recreational basis. Pharmaceutical companies get blamed for fraud, kickbacks, and research deaths, but they never get the credit for oxycontin.
That is why I was thrilled to see that GlaxoSmithKline is sponsoring the prize for the British Medical Journal's annual Research Paper of the Year. Sure, the pharma-bashers will whine like infants at the BMJ’s decision to brand a medical research prize with the name of multinational drug company, just as they’re whining about an American editor’s decision to re-locate a leading bioethics journal to the Texas headquarters of a stem cell tourism clinic. These people just don’t get it. This is not about propaganda or corruption. It is about developing innovative medications for diseases that we didn’t even know existed.
In that spirit, my nomination for the GlaxoSmithKline (GSK) Research Paper of the Year goes to a ground-breaking article about GSK’s very own antidepressant, Paxil, which was published in the Journal of the American Academy of Child and Adolescent Psychiatry. The title of the article is “Efficacy of Paroxetine in the Treatment of Adolescent Major Depression,” but seasoned pharma-watchers know it better as Study 329. The data behind Study 329 showed that Paxil didn’t actually work in adolescents – that, in fact, it was no better than a sugar pill. However, as any marketer understands, bad data cannot be allowed to interfere with a good paper. By the time Study 329 appeared in print, GSK had used the magic of biostatistics to transform the raw data into a gleaming advertisement for Paxil. As a result, when FDA eventually decided that Paxil had a few minor side-effects, such as suicide, Study 329 had already done its work: getting a GSK product into the hands of troubled teenagers. And wait, here’s the beauty part: although the published version of Study 329 was “authored” by leading academic psychiatrists, it was actually written by a GSK ghostwriter.
Of course, the pharma-bashers have been complaining about Study 329 for years. Some of them even want the journal to retract it. The lead “author” who signed the paper, Martin Keller of Brown University, has been beaten up by the Senate Finance Committee, harassed by the New York attorney general, and vilified in the press, all because he put his name on a ghosted article and forgot to report half a million dollars in pharmaceutical income. To which I say: stand strong, GSK. Ignore the naysayers and the nitpickers. It’s about time you gave these good people some public recognition. Yes, it’s true that Study 329 is eleven years old, but you’re paying the BMJ over $47,000 tosponsor this prize. Surely they can bend the rules, just this once.
The last ten days or so we have seen Republicans, and their religious allies, wage a war against contraception—and bungle it badly. With poll after poll showing that a majority of Americans support contraceptive coverage in health reform, and with the 98 percent figure (of American women who have ever used contraception in the context of heterosexual sex) endlessly repeated in the media, the Republicans nonetheless push ahead with this attack, providing a welcome gift to the Obama reelection campaign and much material to political artists and comics. I have lost count of the number of parodies that have been inspired by that now gone viral picture of five male clerics testifying at the Congressional hearing called by Rep. Darrell Issa (R-CA). A picture that of course immediately brings to mind another image of a similar tone deaf moment on the part of social conservatives, the nine men surrounding President George W. Bush as he became the first president to sign a ban on a particular technique of performing abortion, in the case of so-called “partial birth abortion.” It’s no wonder that the term “patriarchy” has made a comeback in the blogs!
The well-publicized refusal of Issa to permit the testimony of a female witness put forward by the Democrats (Sandra Fluke, a Georgetown law student planning to speak to the health consequences of being denied contraception at Catholic universities) only added to the disastrous p.r. of that event. And the “aspirin between her knees” remark of Rick Santorum’s major funder later that day didn’t help either.
But while the media is momentarily fixated on the second big story this month of a losing fight against family planning (remember the Susan G. Komen Fund fiasco?), less attention has been paid to a related war that is not going well at all. The assault on abortion that has resulted from the 2010 elections--the Republican takeover of Congress and many statehouses and governorships--has arguably produced the most serious threat to abortion access since the Roe decision in 1973. What we mainly have heard about this situation are the statistics, the unprecedented number of abortion restrictions introduced and eventually passed in state legislatures at a time when one might assume politicians’ focus would be on the economy.
But there are real people behind the numbers and details of the restrictions. And the enormous toll that the abortion wars take on individual women seeking the procedure and the providers who try to help them are insufficiently appreciated by the general public. Consider the case of Jennie McCormick, a destitute Idaho woman, a single mother of three, who, facing an unwanted pregnancy and unable to travel several hours to the nearest abortion clinic, ordered abortion medication over the Internet, and is now facing criminal charges. She has also been stigmatized in her own community to a degree to which the fictional Hester Prynne of The Scarlet Letter fame could relate. Here is a description of her daily life, as described in a British newspaper:
When Jennie Linn McCormack walks the streets of Pocatello, the town in southern Idaho where she was born, raised, and still lives, she attempts to disguise her face by covering it with a thick woollen scarf. It doesn't really work. In the supermarket, people stop and point. At fast-food outlets, they hiss "it's her"! In the local church, that supposed bastion of forgiveness, fire-and-brimstone preachers devote entire sermons to accusing her of mortal sin…."I feel like my life is over," Ms McCormack says. "I now stay home all the time. I have no friends. I can't work. I don't want to take my kids out in public. People can be really mean about what has happened."….
Consider as well the case of Amy Hagstrom Miller, who directs a number of abortion clinics in Texas, under the name of Whole Woman’s Health. Being an abortion provider in red-state Texas is always challenging, but especially in the past year. Hagstrom Miller has had to contend with implementing the state’s new sonogram law, which requires that women come to an abortion clinic at least 24 hours before their scheduled abortion, and receive a sonogram from the same physician who will perform their abortion. Additionally, the physician must give the patient a detailed description of her fetus’ development. The state has made it very clear to abortion facilities that it will enforce the law through inspections and will revoke the licenses of those doctors not in compliance.
It is not the fact of sonograms per se that is causing headaches for Hagstrom Miller. Rather it is the way the law is written. Patients at her facilities routinely receive sonograms. But the ultrasound used to be performed by a trained technician, the ultrasound was done abdominally and not through the more intrusive vaginal probe required by the law, and patients have not had to make two separate visits.
So now Hagstrom Miller has to contend with the frustrations of many of her patients, who typically have to take additional time off work and pay for extra childcare. She also has to deal with the scheduling nightmare of making sure the same physician who performs the ultrasound is available to perform that patient’s abortion. Hagstrom Miller is convinced that this new rule achieves nothing more than putting more obstacles in the way of both provider and patient, and has not achieved its stated objective of changing women’s minds. “It’s had no effect whatsoever on our abortion census.”
But coping with the sonogram law is not the only thing that preoccupies Hagstrom Miller. For the past year, her clinics have been subject to an unrelenting campaign of harassment by the notorious anti-abortion group, Operation Rescue. To give just one example, her facilities have been subject to no less than 13 surprise investigations by various state agencies, including the state health department, the Texas Commission on Environmental Equality, the state Pharmacy Board, and seven of the physicians associated with Whole Woman’s Health were formally investigated. All these investigations were triggered by “citizen complaints” made to various bureaucracies. Among the “citizens” making such complaints is Cheryl Sullinger, the OR operative whose name was found in the car of Scott Roeder, who assassinated Dr. George Tiller in May 2009, and who herself has spent time in jail for her anti-abortion activity.
To give a flavor of what Whole Woman’s Health has had to put up with as a result of Operation Rescue’s campaign, one of the complaints alleged that aborted fetuses were discarded in clinic dumpsters. So clinics’ staff and visitors were subjected to the bizarre sight of public health nurses in Hazmat suits pawing through dumpsters, routinely opening and photographing the content of every bag, on order of the state health department--and finding nothing incriminating.
When I asked Hagstrom Miller to reflect on her dual difficulties with both the new state sonogram law and the actions of Operation Rescue, she responded:
“This past year has been one of the most difficult of my career in abortion care. It is almost surreal to be constantly challenged for the very thing we have been recognized for doing well…The very state agencies that have licensed us have to take the word of people who have a stated goal of closing abortion facilities by any means necessary. Even when, time and time again, we are cleared of the accusations, they (opponents) are successful in that they have tied up our time, spirits, money and energy and distracted us from the good work we could be doing with women and families in our communities.”
Unlike Jennie McCormick, the young Idaho women mentioned above, Hagstrom Miller is not isolated and without resources. Indeed, she is a cherished member of the closeknit national community of abortion providers, and operates daily in a world of loving family and friends. But the situation of both of them reveal one of the greatest challenges facing the reproductive freedom movement: how to connect for the public the two reproductive wars currently being waged—the contraceptive one that that thus far seems a slam dunk victory, and the abortion one that we are losing, and about which the public is no doubt weary.
In the real world, these two issues of contraception and abortion exist on the same continuum. The use of both are affirmations of the belief in nonprocreative sex. At Whole Women’s Health, and at most other abortion providing facilities, patients are provided with birth control information and services. It is reasonable to assume that Ms. McCormick, only marginally employed, did not have access to reliable contraception. This connectedness of birth control and abortion is of course a major reason that social conservatives oppose the former. And it is a key reason why the 98 percent-ers should more vigorously support the latter.
Today's post is by Patricia Harman, a certified nurse midwife and author who lives and works near Morgantown, West Viriginia. Her first book, The Blue Cotton Gown, was called “luminescent, ruthlessly authentic, humane, and brilliantly written” by author Samuel Shem. Her second book, Arms Wide Open, was described by Tina Cassidy, author of Birth: The Surprising History of How We Are Born, as "A sparkling, vivid story of how a midwife is born-and survives."
Recent events involving Susan G. Komen for the Cure, the nation’s leading breast cancer advocacy group, illustrate how vulnerable women’s health care options are. Last Tuesday the organization announced they were cutting their funding to Planned Parenthood, which amounted to about $680,000 in 2011.By Thursday, under tremendous pressure internally and externally, the charitable foundation reversed its decision.
As a nurse-midwife and women’s health care provider, I see the issue from the front-line when my patients who don’t have insurance come to me with breast problems. Follow me into my exam room and you’ll see what I mean.
Forty-five-year-old Gail Wilson lies on the table with her left breast exposed. I don’t even have to touch her to see there’s a mass. A lump the size of a quail’s egg shows in the upper right quadrant and I inwardly cringe.
“It’s bad isn’t it?” Gail asks me.
“Well, it’s not good, but not all lumps are cancer. How long have you had it?”
“About a year.”
“A year! Weren’t you worried?"
“Not at first, but finally my husband insisted I get an exam. He was laid off at the shirt factory three years ago and we don’t have health insurance…” Her voice trails off apologetically. “There isn’t a Planned Parenthood in my area and it took a few months to find a provider that would see me.” I let out my air wondering how and where I will get this woman a mammogram. I can do her visit for free, but it’s $350, at the hospital, for the scan.
It takes me four days and I’m getting worried, when I finally find a program through the health department that will fund Mrs. Wilson’s mammogram. Unfortunately the news isn’t good; the test shows breast cancer, stage 4, with metastasis into the lymph nodes. Gail waited too long. She won’t last the year.
Approximately 1 in 8 U.S. women will develop breast cancer during their life time, that’s around 300,000 new cases each year and 20% of those women don’t have health insurance.
In a nation as rich as the United States, it is a travesty that people like Gail and her family cannot get diagnostic tests when they need them, cannot get an examination when they’re ill, cannot get medication when it’s prescribed.
The Susan Komen incident should be a wake up call. There are those on the religious right who are willing to sacrifice important health care services to the poor in order to advance their pro-life agenda. Until everyone has access to care, no matter what our personal beliefs about pregnancy termination, we must support Planned Parenthood and other women’s health organizations like it. That’s Pro-life too.
Half a million babies are born prematurely in the United States every year. In this gripping medical narrative, Dr. Adam Wolfberg brings readers into the complex world of newborn intensive care, where brilliant but imperfect doctors do all they can to coax life into their tiny, injured patients. As a specialist in high-risk obstetrics and the father of a child born prematurely, Wolfberg explores the profound questions raised by such fragile beginnings, both from the front lines of the NICU and from his daughter’s bedside.
His daughter Larissa was born weighing under two pounds, and he describes the precipitous birth at six months that left her tenuously hanging on to life in an incubator. Ultrasound had diagnosed a devastating hemorrhage in her brain that doctors reasoned would give her only a 50 percent chance of having a normal IQ. Through Larissa’s early hospital course, Wolfberg examines the limitations of newborn intensive care medicine, the science of “neuroplasticity,” and the dilemmas that surround decision making at the beginning of life.
Wolfberg also takes us into the lab where researchers are working to improve the futures of children born too soon. He follows a young scientist, Jason Carmel, who was inspired to study how the brain adapts to injury when his twin brother was paralyzed in an accident. Through lucid medical reporting, Wolfberg details current scientific practices and discoveries, and explores the profound emotional and ethical issues raised by the advancing technology that allows us to save the lives of increasingly undeveloped preemies.
As they make decisions about life-saving care in the first hours of a premature infant’s life, doctors and parents must grapple with profound moral and medical questions: How aggressively should doctors try to save the life of a premature baby, who will be severely neurologically and physically impaired? What might that child’s quality of life be like after millions of dollars are spent on her care? Wolfberg traces the fits and starts of the physicians, government policy makers, and lawyers who have struggled over the years to find the best way to make these wrenching decisions. Written from Adam Wolfberg’s unique experience as a reporter, as a medical specialist and researcher, and as the father of a prematurely born daughter, Fragile Beginnings lays bare the struggles, discoveries, and triumphs of the newborn intensive care unit.
Beacon Broadside, a project of Beacon Press, is an online venue for essays, news items, and dispatches from respected writers, thinkers, and activists about our times.
