• I was predisposed to like Judith Warner’s new book, We’ve Got Issues: Children and Parents in the Age of Medication (New York: Riverhead Books, 2010). I read it and had a visceral, negative reaction. I couldn’t put my finger on what bugged me. Two weeks passed, and I still couldn’t sort out my thoughts. I sat down with the book again yesterday, and now I can explain.

    Like the more than 60 families Warner interviewed in We’ve Got Issues, my family has children who have needed medication.  I, like so many of these parents, have struggled to come to terms with the implications of medicating kids for diagnoses that 30 years ago would have gone unseen, let alone untreated. In fact, they did go unseen and undiagnosed in my extended family, and the attendant wreckage and dysfunction have been profound. My mantra concerning medicating children for mental illness has evolved to this: it is far scarier to contemplate what things will be like if the meds don’t work than if they do. Hence my predisposition to read Warner’s book with a favorable eye.

    We’ve Got Issues is a combination conversion narrative, memoir, and reportorial expose.  I wasn’t sure how I felt about Warner situating herself at the center of the book, but I thought I understood the strategy.  She was outing herself as a card-carrying member of the opposition, one of the judgmental parents certain that kids these days are helpless pawns. Warner started her project, originally called UNTITLED on Affluent Parents and Neurotic Kids, ready to lambaste “the whole archipelago of therapy and tutoring and labeling and medication” (7). She was prepared to delve into the “social construction of disease,” assuming that overly anxious, ambitious parents were incapable of accepting their children’s imperfections and therefore labelling less-than-perfect behaviors as pathologies.  She was set to dine out on stories about the way Big Pharma fed these anxieties, making gazillions shoveling anti-depressants and untested anti-psychotics into the mouths of babes.  Warner stepped out of her comfort zone to attend a meeting billed as “Should I Worry?” The stories she heard at this meeting in a church basement made it difficult and eventually impossible for her to continue with her stated project. Here were parents describing interactions with out-of-control children who were destined for disaster. Diagnosis, treatment, and medication were saving lives.

    Warner’s conversion moment came when she encountered a sentence the left-leaning French philosopher Jean-Paul Sartre had penned: “Mental illness is the revolt that the free organism in its total entity invents in order to live in an unbearable situation.” She confessed that she’d been inhaling these kinds of ideas for decades:  ”‘Theory’ was like a religion to me” (25). It was time, she decided, to grow up. How could she swallow theory whole when the concrete experience of suffering precluded the validity of the musings of Lacanians and deconstructionists and Marxists? The theorists were engaging in “foolish, inhuman, cruel” thinking, leading her to “deconsruct kids’ diagnoses by analyzing them symbolically” (27). She stopped bashing psychiatrists and started listening to families in the trenches, and she hoped that others sympathetic to left-leaning cultural criticism would join her in her new religious affiliation.  She also hoped that families living through what she was describing would find solace, validation, even community in her book.

    Other reviewers have taken Warner to task for her approach. Did she, in fact, have this come-to-Jesus moment, or was the conversion merely a brilliant marketing strategy?  If Warner cared so much about evidence, why did she focus narrowly on family stories instead of digesting scientific research?  You can click here, here, here, and here for generally favorable summaries and reviews.

    So, why my hesitation in giving Warner kudos? What’s holding me back, given the fierce struggles my husband and I have fought to help our families? As she set out her research methods, Warner explained that she had interviewed “psychiatrists, psychologists, parents of kids with autism, Asperger’s, ADHD, anxiety disorders, OCD, bipolar disorder, dyspraxia, dyslexia, and sensory integration issues — in short, the range of disorders that I had once dismissed as ‘fashionable maladies.’ (And that I will, from here on, refer to as ‘mental disorders,’ ‘mental health disorders,’ ‘mental health issues,’ or ‘mental illnesses’” (27-28). She makes this elision again on pages 35-37.  Since when has “dyslexia” — an umbrella term covering difficulties with decoding, fluency, and spelling written language — been considered a mental illness? And though ADD and AD/HD were, in the dark ages, referred to as “minimal brain damage,” scientists these days think of this condition as a brain difference and a learning disorder.  Dyspraxia — a neuromuscular problem — a mental illness? Come on!

    It’s true that cutting edge researchers are exploring whether many of these conditions are “spectrum disorders.” That is to say, scientists wonder whether there is a genetic relationship between, for instance, ADHD, OCD, bipolar disorder, and schizophrenia.  Families with members who have any of these syndromes are more likely to have children and grandchildren and great-grandchildren who inherit variations of these syndromes. Scientists want to know if similar neurotransmitters or genetic mutations are involved. By conflating these conditions, Warner does a terrible disservice to the field of neurology and to the people — children, in particular — who are living (and living well) with “issues.”

    When I returned to Warner’s book, I was struck by her description of the process by which she initially got her book contract for UNTITLED.  Her editor and publisher were so taken by her as a personality and writer that they green-lighted her idea. I am curious to know if they took a similar approach to the manuscript.  Who reviewed it?  Did no one along the way object to Warner’s approach to “mental illness?” It’s hard for me to believe that anyone working in the fields of psychology, psychiatry, neurobiology, or education wouldn’t have challenged this manuscript.

    Last: by putting herself at the center of her book, Warner blurred the lines between insider and outsider.  She wanted to maintain distance and objectivity so that she could report stories that might be unfamiliar to many readers.  But she committed the cardinal sin of the outsider who wants to pass, by way of empathy, as an insider.  She made a careless, even harmful mistake that no insider, no one who actually lives with “these kids” and “these issues” would ever make. And while there is much to praise in Warner’s new book, I can’t forgive her. I hope, when the book goes to paperback, she will revisit the construction of her definition and make a few critically important changes.

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  • Two articles in this morning’s newspapers speak to one another — but they don’t know it.  

    One is a fascinating piece in today’s Boston Globe focusing on the genetics of an aggressive form of colon cancer. 

    Another in The New York Times’ Business section counsels readers how to get health insurance when they’re already dealing with pre-existing conditions.  

    The Globe piece highlights genetic research linking descendants of one almost-Mayflower family who suffer from a deadly form of colon cancer.  Scientists combed genealogical archives to piece together the puzzle linking families in New York and Utah.  Now that they’ve isolated the genetic mutation giving carriers a 2 in 3 lifetime chance of developing the cancer, scientists can offer aggressive screening practices in hopes of helping carriers catch nascent tumors before they’ve spread.

    The Times piece counsels readers how best to hang onto coverage when they have what insurers euphemistically call “pre-existing conditions,” or medical conditions that existed before application for health insurance.  The definition includes conditions for which patients have sought coverage in the previous six months.  Insurance companies in 44 states may either deny coverage or charge more to those deemed to have a “pre-existing condition” at the time they apply for health insurance.

    Most insurance companies — but not all - can’t exclude based on the results of genetic testing. They can, however, deny coverage if applicants actually suffer from the disease for which they’ve been tested.  The thinking, apparently, is that insurance companies don’t want people waiting to sign up for policies after they’ve already become ill. That’s too expensive.  Instead, they want healthy people in their pools.  They are insuring against the potential for future illness.

    I suppose some of this makes sense if you squint really hard.  Perhaps these kinds of rules would have been appropriate in the 1930s, when Blue Cross (hospital insurance) and Blue Shield (physicians’ services) were founded.  American health costs were relatively low.  There was no such thing as genetic medicine.  I’m not sure there even was such a thing as a pre-existing condition back then. (I don’t know when insurance companies formulated the concept of “pre-existing conditions” and couldn’t find a history on the web — would be grateful to learn more from those with answers.)

    Without a doubt, though, the concept of “pre-existing conditions” makes no sense in the twenty-first century, when advances in genetics change our understanding of health. If, for instance, a person is battling invasive colon cancer, carries the colon cancer mutation identified in the Globe article, and has no health insurance, how is it possible to pinpoint a time when she or he would not have had a pre-existing condition?  The genetic abnormality was there, lying in wait, from the moment of conception. 

    I guess this begs an epistemological question.  With many types of illness, knowing what we know about mutations and genetic predisposition, is it still possible to demarcate a before and after with certainty?  Is there just one, long, unbroken line of “condition” stretching back to the original mutant?  If so, how can insurers continue to craft policy based on the concept of “pre-existing” conditions?

    For me, this isn’t just an exercise in hypothetical thinking.  I carry the BRCA-2 mutation, conferring about an 80% lifetime risk of developing breast cancer.  I’ve reduced my risk with surgery, but with three teenagers, my worry is not over.  It seems enough to worry about whether or not my kids will be carriers.  It is almost unbearable to have to worry if they will be able to get health insurance because of a genetic predisposition or pre-condition.  I want the Obama administration to bring insurance companies to their knees on this one: no more language about pre-existing conditions when it comes to coverage.  Of course, if we have universal coverage, none of us will need to worry about this concept again.  

    I feel like a killjoy when I talk about possible career paths and jobs with my kids.  ”Whatever you pick,” I tell them, “just make sure it comes with health insurance.”  What a terrible way to talk with young people on the brink of hatching plans and dreaming dreams.

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  • There are so many reasons to celebrate President-Elect Barack Obama’s victory last night: what it means for upcoming appointments to the Supreme Court, the significance to our ability to interact with the rest of the world in positive ways, exiting gracefully from Iraq and bringing home our troops, the implication that the best (not just any) person can win regardless of race or gender, the warm fuzzy feeling of the country coming together in a lovely shade of blue. Yes, all of it.  All of it.  It’s so exciting.

    And then there’s my knee.

    My right knee, specifically.  

    When I saw the knee specialist last spring, he reconfirmed that I have a growing hole about the size of a quarter in the cartilage underneath my right kneecap.  When I put pressure on the knee, bone rubs on bone.  It hurts.  At the ripe old age of 46, I don’t hike or backpack, play tennis, run, or do anything that causes impact to my right knee.  Instead, I get in the pool for my own water aerobics routine, ride a recumbent bike at the gym, and do lots of stretching.  More than you wanted to know, but there you have it.

    I asked the knee guy if I’m a good candidate for knee replacement surgery.  Or maybe a partial replacement.  Not really, he told me.  For this particular problem, doing nothing is about as effective as undergoing invasive surgery.  I told him I felt a little helpless, given the lack of options.  

    The knee guy leaned in.  ”Your best bet?  A new administration.”

    Hunh?

    Research scientists have successfully manipulated stem cells in non-human animal models to re-grow cartilage after trauma.  Whether the process will work in degenerative disease is still an open question.  And whether it works in humans is a matter of electing a presidential administration open to regulated stem cell research.  Might take three or four years of trial and error, but, he said, there’s an excellent chance that an injection of engineered stem cells would patch the cartilage hole.     

    Along with all those other people out there hoping to get fixed — those harboring identifiable genetic mutations predisposing them to disease, those hobbled or stilled from injury or deterioration — I’m nursing a bad case of hope today.  Maybe the knee guy is right.  Maybe with a new administration, there’s a chance for a fix.

    My right knee offers thanks all who voted Democratic yesterday.  It would bend deeply in gratitude if it could.  But it can’t.  And that’s the point.

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