There is a terrible tension in healthcare - medicine, especially - between the use of expert knowledge to serve and heal those in need, and its use to aggrandize those with the knowledge and to control, mold, dictate to or torture those who fall into their hands. Knowing what can help another can easily be mistaken for “knowing what is best for them”, and historically has been so mistaken throughout the entire history of medicine as a profession. Today, it’s hard to hear the phrase “Doctor knows best” without an ironic smirk - the same smirk we conjure up for the parallel slogans of wrongheaded patriarchal oppression “Father knows best” and “Trust your government”. But it was not long ago that that slogan was the entirely literal creed of the most respected profession in Western society, and the work of challenging that creed and establishing the primacy of patient values and autonomy was lengthy and hard-fought. Its path was marked by the graves - quite literally the graves - of too many martyrs.

The most entrenched redoubt of medical power (though least well-grounded in research and knowledge) was psychiatry. Not only did the head-shrinkers lay claim to the most occult knowledge of human functioning and health, but they stood against a patient population that was inherently and societally almost unable to defend itself. Members of, possibly, the most severely and unsympathetically stigmatized stratum of society, mental patients were given no credence, and often had no recognized legal standing, to assert their own values and choices in treatment. And it is true that in many cases, patients with mental illness could not in fact act for their own interests or competently manage their own treatment and caretaking. But the presumption that no such patient could have a valid opinion about their own care, coupled with the prejudice that they were unfit for “normal” society, and likely dangerous, meant that virtually anything could be done to anyone, if advocated by a doctor armed with a diagnosis of mental illness. The things that were done were in many cases almost unthinkable.

Howard Dully spent over 40 years thinking about what was done to him. It took him a full life of hardship and failure to finally understand his own fate, and to come to terms with it. That anyone could have survived, let alone found peace and stability, after having lived his story, is an amazement in itself.

Dully is the author (with a professional co-writer) of My Lobotomy: A Memoir. The subject of the book is exactly what the title suggests. The story it contains is heartbreaking.

Dully’s life is difficult to summarize, except to say that it was unremittingly harsh almost from birth. Dully was born in California in 1948; his father was a hard and unemotional man who was driven to work excruciating hours, sometimes at as many as 4 or 5 low-skill physical labor jobs at the same time, partly by the need to support his family, partly by his own obsessive work ethic. Howard grew up a big kid (he’s now 6′7″, 350 lbs) who picked on his younger brother; when he was 4 his mother died after giving birth to a baby brother with a severe neurological deformation - the baby was placed with relatives and never spoken of again within the family. Howard and his family bounced around various friends’ and relatives’ homes as his father struggled to earn a living, and Howard suffered constantly both from missing his mother and from the severe discipline he suffered in some of these homes. Things really got bad when his father married again, to a woman with two sons of her own. Dully claims that she simply resented and hated him; from reading both his own stories of his home life, and some of his doctors’ notes, it is easy to believe he is correct. Howard, in the meantime, was legitimately a handful for any parent: he was apparently flightly and unreliable to an extreme degree, was aversive to school work, discipline, and hygiene, and often fought with his brothers, though they had a generally good relationship. As he got older he began doing stupid kid pranks - shoplifting and stealing items from cars, and playing hooky. As a huge and growing boy, he was constantly hungry, but was not allowed to eat between meals and was beaten for taking snacks. His step-mother also had some sort of obsession with her furniture and household trinkets, and would beat Howard for touching anything in the house, sitting on the parlor furniture, or using the front door. His step-mother would beat him for any infraction, and for things that weren’t infractions; later his brothers confirmed that she did indeed beat him for things she did not mind when done by her own sons, and would rave at him for no reason at all. When his father got home, he would get another beating - his father made him choose a piece of firewood to be beaten with, and Howard developed the skill of picking ones that were flexible enough to hurt less but strong enough not to break (which would encourage his father to continue the beating with his bare hand). Between his actual behavioral problems, his pre-adolescent awkwardness, the fact that his step-mother did seem to truly want him dead, and his father’s absence and emotionally and physically violent treatment, Howard seemed doomed to a life of misery no matter what might have happened. What actually did happen is unbelievable.

Howard’s step-mother apparently conceived the idea that she could get rid of Howard if she got the weight of professional opinion on her side. She began visiting a series of psychiatrists to complain about her son’s behavior, but none of them would agree he had to be institutionalized or removed from the home. Several wrote consulting notes to the effect that they were convinced her harsh treatment was the problem and that she should moderate her behavior toward the boy. She moved from doctor to doctor trying to find one that would agree with her. Finally she stumbled onto Dr. Walter Freeman.

Freeman was the pioneer, in the US, of the new treatment of psycho-surgery. He actually coined the word “lobotomy”, and popularized the use of that treatment in this country. He was the first US physician to see the procedure, after it was developed in Europe just before WWII; Freeman brought it back to the States and traveled the country in specially-modified vans or station wagons that he called his “Lobotomobiles”, giving demonstrations of both electro-convulsive therapy (using a machine he built himself; when it broke down, he simply held the bare wires against the patient’s head for as long as he felt was appropriate, with no mechanism for monitoring voltage or current) and lobotomy. According to the Dully, relating reports of academic researchers who studied Freeman’s career, Freeman was a constant self-promoter and showman: he would perform several lobotomies in a day, every day, in front of medical audiences, liked to demonstrate how easy it was by sometimes using ordinary household implements rather than surgical tools, and developed a signature two-handed bilateral technique in which he would insert “leucotomes” (the lobtomy knife) into both lobes of a patient’s brain and then simultaneously jerk them both through the tissue with a flourish. At times, his death rate ranged upward of 20%. Nobody seemed to think this was cause for alarm. Patients were operated on without their own knowledge or consent, and authorization was freely obtained from courts or patient guardians after reassurances from Freeman that the procedure would solve all the patients’ problems. Often, no precise psychiatric diagnosis was attempted before the lobotomy was performed; lobotomies were used for conditions ranging from headaches to schizophrenia. More than a few were performed on minors, even pre-teens; there were questions about such cases, but little organized opposition. Freeman was profiled in popular magazines, and sometimes hailed as a god, delivering sufferers from their misery. There were many detractors in the medical community, but the great benefit of lobotomy was that it often made patients docile enough to live with their families without monitoring, meaning they could be discharged from the large state mental institutions that were commonplace then. This made the procedure wildly popular with the managers of those institutions, whose patients had no effective representation to oppose the treatment plans made for them by others.

After a few years, Freeman heard about, and again pioneered, a variation of the lobotomy procedure called “trans-orbital lobotomy”, often referred to as “ice-pick lobotomy”. In that procedure, a long, sharp, thin instrument was pushed along the eyeball parallel to the nose, and through the back of the eye socket (”orbit”) into the skull, and into the frontal lobe of the brain. The instrument could then be levered back and forth, and up and down, to tear through the frontal lobes and disrupt their neural circuitry. There was no method for visualizing the exact placement of the instrument in the brain, or the location, depth, or extent of the lesions created; the method was simply to stick the metal rod in through the eye socket and wiggle it back and forth to tear the brain tissue randomly. The effect was almost as dramatic as an open-skull lobotomy, but there was no external wound, and it could be performed under mild anaesthesia. The procedure could be done in an ordinary doctor’s office, and took about ten minutes. In many cases, the surgical instrument used was, in fact, an ice pick. (Freeman’s personal lobotomy instrument was labled “Uline Ice Company”.) Patients were sometimes sent home afterward in a taxi cab.

Freeman began popularizing the trans-orbital lobotomy, sometimes performing as many as two dozen procedures a day on patients in mental institutions and hospitals. In some cases, patients were operated on against their consent; after the procedure, they lacked the drive and wherewithal to sue. After some years traveling the country in his Lobotomobile, he finally settled in the South San Francisco Bay Area, near where Howard Dully’s family were living. Eventually, Dully’s step-mother asked to see him.

Freeman met with her a number of times over a period of two months, duly recording her wild stories of Howard’s unmanageable behavior (some of which later turned out to be pure fabrications - such as the story that he had beaten his brain-damaged baby brother almost to death). From the beginning the step-mother openly solicited some kind of dramatic professional intervention. Freeman hesitated at first, insisting he would have to meet the patient and interview the other family members before coming to any conclusion. (What seems incredible is that he began formulating treatment plans with the mother for weeks before ever once meeting Howard.) He interviewed Howard’s father one time; the father gave a much more balanced report of Howard’s behavior, but Freeman didn’t pick up on the clue. He began to meet with Howard himself, and found him reasonably normal though somewhat uncommunicative (who wouldn’t be?). But he kept meeting with Howard’s step-mother, who still filled him with tales of how afraid she was of Howard, how her other sons were afraid of him and were constantly beaten up by him (they deny this), and finally how Howard had beaten up his baby brother in infancy (his entire family denies this - and note that the step-mother was not part of the family at that time). Freeman seems to have accepted everything she said, and viewed Howard’s truancy and other bad behavior through this fictionalized and delusional lens. After four meetings with the step-mother, only one meeting (ever) with Howard’s father, and four visits with Howard himself, Freeman recommended that they should attempt to “change his personality” with a trans-orbital lobotomy. Howard’s step-mother immediately agreed, and took the papers home for his father to sign, which he did without ever speaking to the doctor again. Freeman cautioned the parents not to tell Howard what would happen - only that he would be admitted to the hospital for “tests”. Howard excitedly looked forward to his night in the hospital, because he had heard they gave you Jell-O there. And they did. It was two weeks after his 12th birthday.

Freeman lobotomized Howard the next day. Howard has no memory of any of the events of that day. He contracted a fever and an apparent infection (Freeman was infamous for not sterilizing his instruments before surgery; you can see, in the actual photograph of Howard’s procedure, [see photo at end, below the jump] that he is not wearing gloves), but recovered soon enough.

The rest of his life was a disaster.

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I met Robert Rummel-Hudson last night at his New York book party, celebrating the release of Schuyler’s Monster, his memoir of his daughter’s struggle to meet the challenges of having been born with polymicrogyria - a neurodevelopmental disease that prevents her from developing spoken language - and his own struggle to meet the challenges of parenthood and the demands imposed by his daughter’s condition. The book grew out of Rob’s gripping, heart-rending blog, Fighting Monsters with Rubber Swords.

Robert has been documenting, step-by-step, the pathway he, his equally-admirable wife Julie, and Schuyler (pr. “SKY-ler”) herself have followed, first coming to terms with Schuyler’s developmental difficulties, then battling the public schools’ broken and indifferent system for educating special-needs children until finally moving to a city (Plano, TX, of all places) that offered what Schuyler needed. At the urging of his growing base of enthralled fans and well-wishers, he turned the blog into a book that hit the market just this week. It has already received considerable word of mouth and small-market press attention even before release; I am convinced it is just about to explode into a real sensation, and deservedly so.

Robert has an ability to communicate the pathos and humor of his family’s situation, and even more strongly Schuyler’s unbelievably spunky and winning personality, and her brilliantly unique triumph over the multiple dirty tricks life has played her. Schuyler is without question the star of his blog (which, he says, she still has not read, nor has she the book, either, though she is fully aware that she is a media queen). It is impossible to read their story without falling in love with Schuyler (and indeed she is regularly showered with largesse by fans, often anonymous, who have visited the family’s Amazon wish-lists). “Schuyler has a posse!”, I told Rob, and he agreed that one of the most satisfying side-effects of blogging about her condition is that she has garnered such a wide-spread support base. That is due to Rob’s ability to make her come alive through his words - though it’s obvious Schuyler is giving him a lot of great material to work with.

In person, Rob comes across just as you’d imagine from his blog: funny, personable, thoughtful, fiercely dedicated to Schuyler and her needs, worried about her future, and laceratingly honest about his own uncertainties and shortcomings (which I think he overestimates). It was great fun meeting him, and I was glad to see the St. Martin’s Press staff just as enthused about the book as were the many fans who turned out to meet the author.

I mention all this simply to add this plug for a book that deserves to be read, and will break your heart and change your viewpoint when you have done so. I can’t communicate the impact of Rob’s blog or the book it gave rise to, but I urge everyone to experience them for themselves.

(1) Go buy this book:

(2) Go read this blog.

You can thank me later.

UPDATE: Fixed an editing mistake.

There’s an interesting article by Ron Rosenbaum, in Slate, regarding the fate of Vladmir Nabokov’s final, unfinished manuscript.

Nabokov left a manuscript on index cards, apparently totaling about 30 pages’ worth of text, for an unfinished book titled The Original of Laura. No one outside his family knows what is in the text, or what the title means. Nabokov left unambiguous instructions, at the time of his death, that the manuscript was to be destroyed without publication. This jibes with ideas he expressed elsewhere about refusing to publish imperfect works. His wife, the legendary (infamous?) Vera Nabokov, was his literary executor; she indicated she would follow his wishes but never got around to destroying the cards. When she died in 1991, the cards, and Nabokov’s imprecation, fell to his son Dimitri, who has otherwise actively defended his father’s literary legacy. Dimitri has indicated that he is ambivalent about destroying the work, but is apparently leaning in the direction of carrying out his father’s wishes. Rosenbaum has corresponded with Dimitri over the years, encouraging him to publish the material; in his Slate article, he broadcasts a call for input from readers, promising to forward the best responses to Dimitri, who is apparently finally nearing a decision.

Well. By itself all very interesting, no doubt, and arguably very thinly connected to bioethics by way of Nabokov’s background in biology. (Rosenbaum even tries to link Nabokov’s Laura to Petrarch’s Laura by way of a bird image in the latter and one of Nabokov’s ubiquitous butterfly images in Pale Fire; Dimitri scoffs at this.) But it really doesn’t seem to be an immediate issue in bioethics itself. Or is it?

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I read Chuck Palahniuk’s latest novel, Rant: an Oral Biography of Buster Casey, on the strength of a description of its plot. I thought it might raise some interesting bioethical issues. I suppose it does. Mostly it makes me want to take a shower.

Honestly, I have no idea what to think about this business, but . . . here goes:

Rant is a pseudo oral history of the life and exploits of the title character, Buster “Rant” Casey. Palahniuk delivers over 300 pages of short-paragraph-length observations from peripheral characters describing their interactions with him from overlapping and mismatching perspectives. (The book reads quickly because, given the large amount of white space between the “recollections”, it’s probably closer to 250 pages of real text.) We’re supposed to reconstruct the events described on the basis of which stories we believe. When you solve the puzzle, you get a picture of a dysfunctional and paranoid society suspiciously like our own, in which the government has vacated all civil liberties, imposed lifetime detention without trial for undesirable elements, and sequestered half the population in a dark underworld in which they are doomed to menial, marginal existences, receive a grudging minimum of social services, and can be shot on sight for being caught in the wrong place with the wrong paperwork; the justification for all this is . . . (wait for it) . . . the security of the nation, in the face of an existential threat from an invisible but omnipresent enemy. Young people respond to this with desperate nihilism, engrossing themselves in bizarre and self-destructive practices, as well as drugs, mindless sex, and violence. Behind the scenes are shadowy conspiracies enacted by powerful individuals who maintain the danger and the resulting oppression for their own interests: corporate, political, or religious.

Palahniuk’s take on this otherwise none-too-fictional theme is that the danger in question is not terrorists or traitors, or weapons of mass destruction, but biology. The world is driven to the brink of collapse by an unstoppable epidemic of rabies, passed mouth-to-mouth through close, casual contact, through sex between unknowing partners, and sometimes by those who deliberately seek infection as an act of rebellion. Rant Casey is the source of the infection, and of much else that goes on in this strained and tortured world.

[Spoilers Follow]

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Making with the sorely overdue link-love: two months ago, Amanda Marcotte (of Pandagon, and the best thing that ever happened to John Edwards) linked my prior post on right-wing propaganda about Margaret Sanger (as a way of attacking Planned Parenthood). She points out the fact that, in Sanger’s day, PP was actually anti-abortion (largely for reasons of the relative safety of the procedure, much lower then than now), and that the wingers seem to have no conception of the irony of their slanders.

The article generated a fascinating discussion thread, however (with minimal, but nonzero, trollage) - one that I only stumbled across today by following a visitor link (thanks!). I’m sorry to be so late on this but I encourage everyone to run over there; the discussion is interesting and, collectively, it includes a fascinating list of resources on the history of abortion, abortion and race, and sexual autonomy as seen from a variety of times and places, and presented in a variety of media (the rock-opera version of a 19th-century German play about the link between lack of sex ed and unplanned pregnancy sounds . . . wild - and I had no idea there was a whole list of early silent movies on the same topic!). Now I’ve got a lot more reading to do! So do you.

I attended an interesting conference session today on the relationship between bioethicists and the media. Most of the discussion focused on the ways the media distorts or simply does a bad job reporting controversial issues, especially on difficult or abstract subjects such as arise in bioethics. The question was pitched as “How should bioethicists relate to the media?”

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[This is the first post in an irregular series of reviews and discussions of fiction and non-fiction books relating to bioethics or concepts in the field.] 

Robert J. Sawyer is a hugely creative sci-fi author (Hugo, Nebula multi-nominee and winner, slews of other awards) with a fascination for issues touching on human personhood and human nature. He has a widely-read series that posits a parallel universe in which H. neanderthalensis evolved to become the dominant species, with a distinctly different human nature from that of H. sapiens, and a number of similar books in which human nature and the science/religion conflict are examined from a perspective slightly removed - by the license granted to science fiction - from our own. His most recent book is Mindscan, an examination of the possibility of cognition “uploads” - the copying of memory and thought from the human mind into a permanently-rebuildable (hence immortal) synthetic substrate. The fact that the copying process does not destroy the original - that it creates two cognitively-identical minds housed one in its original organic body and the other in an indefinitely long-lived synthetic one, which then vie for recognition as the “real” person - gives the plot its tension.

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