Was a Tulane Psychiatrist Described by Some as a Monster a Victim of Presentism?Historians/History
tags: interview, Lone Frank, Dr Robert Heath, Tulane, psychiatrist
Robin Lindley is a Seattle-based writer and attorney, and the features editor of the History News Network (hnn.us). His articles have appeared in HNN, Crosscut, Salon, Real Change, Documentary, Writer’s Chronicle, Billmoyers.com, Alternet, and others. He has a special interest in the history of medicine and human rights. His email: firstname.lastname@example.org.
His biographer, Lone Frank, thinks so, as she explains in this revealing interview.
Since the 1980’s, a medical procedure called deep brain stimulation (DBS) has been an established and successful treatment for control of movement disorders such as Parkinson’s disease, essential tremor, and dystonia. The technology has, in many cases, relieved tremors and other symptoms that are otherwise intractable.
Deep brain stimulation involves surgical implantation of electrodes within particular areas of the brain, and these electrodes emit electrical impulses to regulate abnormal brain impulses or to stimulate or inactivate certain cells and chemicals to address aberrant activity. A patient controls the amount of electrical impulse with a pacemaker-like device that is implanted under the skin in the upper chest and connected by a wire, also under the skin, from the device to electrodes in the brain.
The use of DBS for movement disorders was widely seen as a brand-new and virtually miraculous technology in the 1980’s. However, an acclaimed science writer, trained neuroscientist and intrepid researcher, Dr. Lone Frank, has uncovered the hidden history of this procedure and its discoverer, Dr. Robert Heath, who experimented with deep brain stimulation for schizophrenia, depression, and other maladies in the 1950’s.
In her new book, The Pleasure Shock: The Rise of Deep Brain Stimulation and Its Forgotten Inventor(Dutton), Dr. Frank recounts the story of this medical technology as she unravels the mystery of the discoverer of DBS, Dr. Heath, a pioneering psychiatrist and researcher who was admired by his colleagues and vilified by his critics. She reveals why his groundbreaking research on use of electrical impulses in the brain was kept under wraps by Tulane University where he headed the psychiatry department for more than three decades.
Dr. Frank shares her own journey of discovery with the reader as she pores over documents and films of Heath’s research and meets with his now aged colleagues. She reports on the intricacies of Heath’s experiments and the ethical questions that arose in hindsight. And she details Heath’s theoretical objectives, patient responses to therapy, and his controversial experiments involving gay conversion therapy and the CIA’s mind control initiative.
Dr. Frank also brings the story up to date with a discussion of present day DBS use and research, and the the triumphs and hopes for the technology, as well as lingering questions about ethics and efficacy. As Dr. Frank discusses, the procedure is seen today as a fairly recent technology that may be useful in treating an array of disorders such as major depression, dementia, traumatic brain injury (TBI), chronic pain disorder, and epilepsy, among other conditions. And the U.S. Defense Department has poured tens of millions of dollars into DBS research in hopes of addressing problems such as post traumatic stress disorder (PTSD). In most cases, the verdict is still out on the effectiveness of DBS for treatment of these conditions.
The Pleasure Shock also explores the ethical implications of medical research and the importance of looking at historical figures in the context of the standards and politics of their time. As Dr. Frank stresses, the ethical boundaries when Dr. Heath worked were not as distinct as today--and she warns that we may look back on current research in years to come and find it unethical or even barbaric.
Dr. Frank is a renowned journalist and author with a Ph.D. in neurobiology and a background in biotech research. She works as a staff writer at Weekendavisen, Denmark’s leading newspaper, and she is considered Denmark’s most distinguished science writer. She has written four other acclaimed books: The New Life; Cloned Tigers; Mindfield; and the award-winning My Beautiful Genome: Exposing our Genetic Future, One Quirk at a Time.Dr. Frank also has written for leading publications such as Science, Nature, Biotechnology and Newsweek, and regularly appears as a commentator on Danish radio and television. And she has presented and co-produced several documentaries including the award-winning film Genetic Me. She is currently working on a feature-length documentary about Dr. Robert Heath. She lives in Copenhagen.
Dr. Frank generously discussed her book and her work by telephone during her busy trip to the United States to film her documentary on Dr. Heath and deep brain stimulation.
Robin Lindley: Thank you Dr. Frank for agreeing to discuss your new book on deep brain stimulation, The Pleasure Shock. You’re a renowned science writer with a doctorate in neurobiology. How did you decide to study neurobiology and then go on to become a science writer?
Dr. Lone Frank: I was always interested in the brain from a very young age. The brain is the seat of who we are. I’m an atheist and I’ve never believed in souls or anything like that, so I’ve had this feeling from early on that we are our brains.
When I went into biology, it was with the intention of going into neuroscience and brain research. I had my PhD and was about to start a career. The reason I left is that I found out in doing the PhD work was that I was not interested in doing the bench work, sitting there concentrating on very limited problems for a whole career. No, I was interested in the bigger perspective. What does our knowledge of the brain mean to our lives? What does it mean to how we look at ourselves? What does it mean to our culture?
So, I decided to get out of science where I’d be limited, and I just started writing and thinking about what all of this means. And that’s what I’ve done ever since.
Robin Lindley: With The Pleasure Shock on deep brain stimulation, what sparked your interest in this medical procedure—which may be unfamiliar to many readers?
Dr. Lone Frank: I think it was years ago when I was sitting at my desk as a journalist at my newspaper and I came across this “new” technology that was being used for the treatment of Parkinson’s disease. Instead of medications for the brain, [physicians] were trying to insert small electrodes that would only affect small brain areas around the electrodes. It was a very specific treatment instead of nonspecific medication.
I thought it was really interesting because we had been conditioned to look at the brain as this chemical soup, and that has been the narrative and vocabulary for a long time. The brain is a chemical soup, but it’s also an electrical system. Neurons are little electrical transmitters. A new view is that we are dealing with electrical circuits that interact in intricate ways.
Affecting these brain circuits was an up and coming and more specific treatment first for Parkinson’s disease, a movement disorder. A Parkinson’s patient may be shaking and trembling uncontrollably and, when someone turns on the deep brain stimulator, the trembling stops. It’s a miracle.
This treatment seems very effective for movement disorders but we see Parkinson’s as a problem of muscles and the body. But of course, we can use the same technology on anything in the brain including what we call psychiatric disorders. So, what happened a few years ago, this deep brain stimulation was being moved into psychiatry from movement disorders. I thought this was like psychosurgery, which had a bad name because of lobotomy.
So, I got interested and tried to learn what they were using the technology for. And somewhere on the web, there was just a little mention of Robert Heath who had tried this out in the 1950s. I’d never heard of this guy. I looked into psychiatric history books and I didn’t see him anywhere. But everyone was thinking DBS was a new technology even if Heath had used it in the fifties and sixties.
That’s what piqued my interest and how I started to dig into that story.
Robin Lindley: I appreciate your intensive research to unearth the story of Dr. Robert Heath, this forgotten figure in the history of medicine. What are some things you learned about Heath? He is considered the “inventor” of deep brain stimulation, but were there predecessors in the field who developed forms of that technology?
Dr. Lone Frank: There were other people at the time who used stimulation at the cortex (brain surface) for investigating to see what happened. But Heath was the first to insert electrodes deep inside the brain and let them sit there and stimulate people for hours at a time.
Robin Lindley: And electroconvulsive therapy (ECT) was used before Heath’s time. Was that technology important to learning about deep brain stimulation?
Dr. Lone Frank: Not at all. ECT is quite different. It’s a nonspecific treatment and it’s basically shocking the brain from the outside. It’s like rebooting a computer in a way, whereas with deep brain stimulation you have a microelectrode and place it into a specific region of the brain where you think something is wrong and the electrical activity needs to be corrected. It has nothing to do with ECT and that was not the inspiration.
The inspiration was that Heath had been involved in studying lobotomy. These treatments in the thirties and forties were where you took out pieces of people’s brains to try to do something about psychiatric disorders like depression and schizophrenia. Heath was the main evaluating psychiatrist on the study of these procedures and he found that taking out pieces of the cortex of the brain did not do anything for the depressed person’s or the schizophrenic’s symptoms. They just blunted people’s emotional lives. It was all side effects and really no effect.
Heath’s idea was to do something that didn’t damage the brain but would just correct activity that is aberrant in some way. He had a theory on why there must be aberrant activity in deep emotional areas.
Schizophrenia was his main target. Heath was passionate about trying to do something about this disorder and to figure out its causes and an effective treatment. And he had ideas on why he thought he should go into these deep areas of the brain and try to evoke or stimulate the experience because the schizophrenic patients are anhedonic. They don’t feel pleasure. Actually, today there’s a lot of talk about anhedonia as an absolutely essential symptom of schizophrenia.
Robin Lindley: And Heath called one of his houses Hedonia—the opposite of anhedonia.
Dr. Lone Frank: Yes, he called his summer house in Picayune, Mississippi, Hedonia. It was a pleasure house. I just went there on this tour to do the documentary and we filmed there.
Robin Lindley: I talked with a neurologist who said that deep brain stimulation isn’t actually stimulating but rather dampens or inactivates parts of the brain. Maybe that depends on the procedure and the problem.
Dr. Lone Frank: It depends on the frequency. You use different frequencies depending whether you want to stimulate or dampen activity, but it’s still called deep brain stimulation. You can vary the frequency to get different effects in the brain. So yes, he’s right.
Robin Lindley: In the fifties and sixties, were there many other physicians who embraced deep brain stimulation based on Dr. Heath’s work?
Dr. Lone Frank: Not at all. But another person who was using this quite a bit was Jose Delgado, a neurologist at Yale. He mostly did animal experiments but he also had some human patients. He collaborated in treating these patients with Dr. Frank Irwin who trained with Heath and was his first student on his experiments. Basically, these two people and Heath did the most in the way of patient treatment and not just studying the effects.
This was a time of biological psychiatry and Heath was a pioneer in looking at psychiatry from a biological angle. He was trained as a psychiatrist and a neurologist and was an early proponent of biological psychiatry. He saw schizophrenia as a biological brain disease. This made him a lot of enemies. He was not a Freudian and, at this time, Freudians were at the forefront of American psychiatry and a lot of American psychiatrists embraced psychoanalysis. These people hated the approach of Heath. It was anathema to them. They were all about the cold mother and psychodynamics and all sorts of de rigueur thought about what the mind is
So Heath made enemies and, as I try to say in the book, he probably had a personality that worked against him. He was flamboyant. He wasn’t a political operator. He basically did what he thought was the best scientific approach. Heath was very much in his own little world. He had a group of people around him who completely believed in the same ideas, but he was not good at spreading his ideas. And the climate at the time was also not right for his ideas.
Robin Lindley: Why do you think Heath is forgotten today? He headed the Tulane University Department of Psychiatry for decades. Some critics saw him as a monster but many people you cite who knew him said he was humane and progressive. It seems that his record was tainted by his work on gay conversion therapy and CIA research.
Dr. Lone Frank: I think a lot of stories and myths have been played up. When you go on the web and search for Robert Heath there’s not much about what he actually did.
First, if we look at the CIA work, at that time, the CIA’s MKUltra Program was already in place and a lot of top neurologists were doing work for the CIA. They were working with LSD and other substances that were supposed to brainwash people. And a lot of horrible work was done that has been chronicled in several books and papers.
Heath was actually not involved in any big way. He did an experiment on monkeys with a substance called bulbocapnine, which the Russians were trying so the CIA thought it was probably great for brainwashing and they wanted to try it. Heath tried it out on a couple monkeys and they fell asleep. Then he tried it on one volunteer, a prison inmate. And it should be said that today, we ask how could you try something out on prison inmates? That’s what was done at the time. Heath did it. It was common throughout the U.S. and this procedure was normal at the time. They could go to a prison and get permission to ask prisoners “are there any volunteers for a study of this drug?” And some would do it because it would get them out of their prison routine for a while. This was not something that Heath did that was way out there. It was a standard procedure.
Anyway, Heath studied bulbocapnine on one prison inmate who told him it was like “being drunk or being high.” With that, Heath told the CIA that it wouldn’t wash any brains with this stuff. And that was the end of it. His involvement was very small and there were many other people.
Robin Lindley: And then there are stories about Heath’s gay conversion experiment.
Dr. Lone Frank: I chose to begin my book with that experiment because that has become the emphasis on the internet and in the public. It was one experiment with a patient whose name we don’t know. He was called patient B-19. He was a young, gay man with a lot of psychiatric problems, which you read about in the scientific paper that Heath wrote. He was in therapy already and he was very anxious and very depressed. He was a patient they tried to treat with medication. Apparently, the man did not want to be a homosexual. He was very negative about his sexuality and wanted to be heterosexual.
This was in the 1970’s and homosexuality was still in the DSM (Diagnostic and Statistical Manual of Mental Disorders) as a psychiatric illness. And psychiatrists and neurologists were doing all sorts of weird stuff to try to convert these people. One method was called aggressive ECT where you would give a person so many electroshock treatments that they were bombed back to the stone age mentally. They hoped that shocking the brain would make the patients rebuild a “normal” sexuality. Another method used at some places in America was to treat gay men by showing them pictures of naked men and shocking their testicles while they were watching these pictures to condition them to not be aroused by seeing naked men. These are things that went on.
Heath had the idea that, if you could connect the experience of pleasure in the homosexual man with heterosexual activity, then you could convert him to taking pleasure in heterosexual activity. The patient B-19 had electrodes placed in several areas of the brain and he had control buttons for the electrodes so he could stimulate himself and he did this quite a lot because it gave him pleasure. They also showed him heterosexual pornographic movies, and he would stimulate himself as he was watching. He would get to the point where he had pleasurable experiences watching heterosexual pornography.
The patient then asked to try this out in real life. He asked, “Can I do this with a woman?” They went to the district attorney [in New Orleans] at the time—infamous for the Clay Shaw trial. Heath asked if this was permissible, and [the district attorney] said, “Go ahead.” And the attorney even offered to find a prostitute who would accept being with this patient B-19 for an experiment.
The experiment was that patient B-19 and the prostitute would be together in a hospital room. At the time, the scientists would read off the electrodes in his brain to see if he would get a pleasure response in the brain waves. It was an experiment to see if he could derive pleasure with a woman in heterosexual activity, and it turned out that he could. You can read all about it in the original paper, which is on the web.
Today, doing conversion therapy on homosexuals sounds crazy. But again, this has to be judged on the standards of the time, not on today’s standards. I think many people forget what was done in the fifties and sixties cannot be judged by what is done now.
In the book, I try to pose the question: if we look at what psychiatrists and neurosurgeons are doing with deep brain stimulation now, are they terrible? Are they going about the problems in the same way as Heath?
We are now very enthusiastic about putting these things in the brain to treat obsessive-compulsive disorder (OCD). We can treat autism. We can treat overeating or anorexia, or whatever it is. And they try it out saying that these patients have no other possibilities. It’s exactly the same reasoning now as Heath used, and it’s exactly the same enthusiasm. Everybody thinks DBS is great and there’s a lot of hype about it in the press. At the same, the people look back at Heath and say that was terribly unethical, and it was.
Robin Lindley: It’s so important that you bring up that historical context and what was happening generally with medical experimentation in Heath’s time. Tulane had buried his records and, as you note, those resources are kept “under lock and key.” You were able eventually to review his records and even view films of experiments. And Heath was department chair for decades at Tulane. Why do you think the university made his records so difficult to access?
Dr. Lone Frank: They decided that his work was controversial—and it was controversial toward the end of Heath’s life-- so they said let’s bury this [because] somebody could write a horror story about this. And somebody could write a horror story about anything if they want to. You can cherry pick and say all this stuff and, if you don’t look at the historical context, you can certainly write a horror story.
And I think that Tulane had been approached by several journalists and others who wanted to do horror stories, so they probably decided to just try to bury it. And they could always say that there’s the HIPAA (Health Insurance Portability and Accountability Act) law that prevents us from showing these films because there are patients in them who can’t consent to have the films shown.
Of course, most of the patients have died and nobody can recognize them. There aren’t any names. I think they should publish these films and make them available for today’s researchers and others because these are historical records. Some of these films are eerily reminiscent of films that are being done about deep brain stimulation today. It’s exactly the same thing that has happened and I hope we can get permission to show some of the footage in our documentary because it illustrates so fantastically that what they are doing now is what they were doing then.
Robin Lindley: It’s fascinating how you see parallels to the research today. I wanted to ask about your own research process. You’ve touched on your archival research. In the book, you describe interviews with colleagues of Dr. Heath and other efforts to find information. You traveled widely.
Dr. Lone Frank: It turned out to be a difficult project. First of all, I contacted Tulane. There was some material on DVD and newspaper clippings. That was well and good. But I wanted to get to people who had known him and worked with him at the time.
I went on a hunch that a few of these old men were still alive. I found them from the papers that Heath put out. First, I got to Frank Ervin who was an early researcher and for many years had worked at McGill University in Montreal. I found his phone number and called him out of the blue and said, “I’m doing a story about Robert Heath and I heard that you worked with him. Is this something you’d be willing to talk about?” And he said, “Oh my god. It’s been so many years since I’ve heard anyone talk about Robert Heath. Oh yeah. Come on. You can come here to Montreal and we can talk all day. Heath is a really interesting story.”
So I went there and sat down with Ervin. He has since passed away. He had all sorts of physical illnesses, but he was razor sharp. He told me, “I’m held together by 20 pills a day.” He was very gracious and very sharp and remembered everything. And he had a lot to say about Heath.
It’s not a black and white story. It’s not that Heath is a monster or a hero. He was a complex figure with personality issues and difficulties that anybody has. But he was also recognized as an early proponent of biological psychiatry and was interested in trying out new treatments for conditions that were untreatable at the time.
Frank Ervin told me that, although Heath was criticized as a monster, he was a very good clinician. He felt strongly about trying to help his patients. He actually went from Columbia University to New Orleans and tried to remake the Louisiana system of psychiatric hospitals, which was appalling at the time. Really horrible like the old asylums. Heath had a new ward built. He insisted on single rooms instead of big wards where people were all together.
Everybody I talked to told me the same story: Heath was a humanist. He was genuinely trying to help his patients. He felt the stigma of psychiatric illness was unfair. He was trying to stamp this out and said these are biological diseases and we should try to figure out their causes and treat them with measures that will address the diseases.
People also agreed that Heath was not a great scientist. He might have been a good theoretician with good ideas but he was a medical doctor and not really trained as a scientist. You can look at his experiments and say he ought to have had more controls and ought to have done this or that. And that’s true. You can also say that about much of today’s research on deep brain stimulation.
I went from Frank Ervin to other people who Heath had worked with. What they all said was that Heath had been a mentor for them, and he was a great thinker and a great motivator. Charles O’Brien, who heads a big addiction center at the University of Pennsylvania, said that Heath got him into looking at the biology of addiction.
I heard the same thing from Alan Lipton who worked in clinical psychology at the University of Miami. He said that Heath was a really smart guy who had great ideas and wanted to change things. And he was a great clinician, but probably not the best scientist in the world.
I should also mention James Eaton who was at NIMH for many years and still practices psychiatry, and who is himself gay. He told me that Robert Heath was never prejudiced. He never had anything against gay people or against black people or against Jews. He was a very unprejudiced person in a very prejudiced city: New Orleans.
People who knew Heath had very good things to say about him. The painting of the monster picture—I don’t exactly know how that came about. On the web, you can find a lot of links to Robert Heath as the guy who experimented on black people. No, not at all. When you watch the films, the patients are basically all white. There were a few black people. It wasn’t about whether a patient was black or white. It was about patients being treated.
Robin Lindley: You have portrayed a very complex person.
Dr. Lone Frank: I hope when one reads the book, that it’s not a tale of a hero. It’s the tale of a pioneer, the kind of person who tries things out and takes chances. Heath was such a person with all the drawbacks and advantages that they have. I think he was too bold. He was too forward at the time. Certainly, he got in trouble in the seventies when psychosurgery such as lobotomies were on trial. And he was not performing lobotomies, but the trial of lobotomies took every surgery on the brain [to treat mental disorders] with it. He was classified as a psychosurgeon, as were others, but he was doing something quite different from lobotomies. The seventies basically ruined Heath’s approach.
Robin Lindley: Wasn’t Heath’s work also affected by the revolution in psychiatric medication to treat disorders?
Dr. Lone Frank: He was also one of the first people to test medication. He was chosen as an expert to test the first anti-psychotic medications. He moved on from deep brain stimulation to medications that could now treat schizophrenia. He also tried to treat depression and other conditions like psycho-motor epilepsy, a form of epilepsy where people get strong fits of aggression and violent episodes. That is something people are still trying to treat.
Robin Lindley: There’s currently a great interest in deep brain stimulation. As you note in your book, the U.S. Department of Defense is investing tens of millions of dollars in DBS. What does the military hope to learn?
Dr. Lone Frank: DARPA (Defense Advanced Research Projects Agency) has put 70 million dollars into research on the next generation of deep brain stimulation. It’s interested in developing deep brain stimulation systems that can treat all sorts of mental conditions where you have not just an electrode that stimulates some place in the brain, but you have electrodes spread out over the brain. You read the brain activity. This is about little computers in the brain, basically, controlled by algorithms. With PTSD (post traumatic stress disorder), if the brain readout is intense, a flashback is about to be released. Then, the system will make sure that other electrodes in the brain fire so that the person with PTSD doesn’t suffer the flashback. It’s a way of normalizing the brain by reading it effectively and preventing aberrant activity.
They’re developing systems that can, for example, manipulate the brain of someone with OCD or somebody with depression in subtle ways and put their brain activity back to what we call “normal.”
Robin Lindley: Some skeptics may see sinister intentions in the Defense Department research on DBS that could be used to encourage violent behavior—rather than curtail it.
Dr. Lone Frank: That’s a parallel I try to make in the book. DARPA is developing this technology, and technology can be used for good or for bad. You can treat people who are ill or, for example, you can manipulate a normal brain to be less emotional. You could make a better soldier if you wanted to. There are all of these possibilities you could imagine.
When the media write about this DARPA work, they are all excited about it. What I’m saying is that this is very much like looking back in time. Everybody was excited about the CIA research until the MKUltra program was unearthed, and it was sinister in fact.
Why aren’t we thinking in our own time about this research? We don’t look at history and ask should we look at what happened and see if this should or could happen again. We don’t see what history tells us, which is unfortunate. Then suddenly we can have a big backlash where people say DARPA is using deep brain stimulation.
I’m trying to argue that we should always scrutinize ourselves and the scientific evidence and look at the history and learn something from it, instead of saying what happened back in time was awful and what happens now is far different because we are at the controls and this is all good.
Robin Lindley: That reminds me of the eugenics movement for “healthier” people that was embraced by the U.S. and Britain in the early twentieth century and we can see where that led when it was adopted by Nazi Germany as a justification for killing millions.
Dr. Lone Frank: Yes.
Robin Lindley: The technology of DBS seems well accepted for treatment of Parkinson’s and other movement disorders. You also write about research on deep brain stimulation for psychiatric disorders, Tourette’s syndrome, traumatic brain injuries, and other conditions. Did you find that deep brain stimulation is succeeding with any of these problems?
Dr. Lone Frank: If you look at media coverage of these recent experiments, it is very positive. We have a group of patients who say that their lives have been changed by these electrodes. That happens for some people. There also people who are not helped by deep brain stimulation. It is so far a positive story about this new technology that might help some people.
I think there is great acceptance because we are looking at the brain and mental illness in a different manner than say 20 years ago. It is now widely accepted that these are biological conditions. If you address the biology and you get a result, you may get a treatment for the condition.
The time is very ripe for this. We are at a time in our history where we look at ourselves and we are our brains. We have no soul. The psyche is the brain and the brain is a chemical-electrical system and we can manipulate it in different ways to get the results that we want. I think deep brain stimulation is a very timely treatment.
Robin Lindley: Thank you for commenting on the current experiments. I was impressed that you are a character in your book and you show the steps you took to reveal the story and pursue your research. I think that process would be instructive for historians and other researchers.
Dr. Lone Frank: I think it’s also conscious for me to make the book honest for the reader about where I’m coming from. Why am I fascinated by this particular story? It’s a question of interpreting things. I don’t want readers to think this is the truth written in stone. It’s a book. I’m honest that this is from me reading the sources and interpreting the sources. This is my interpretation. I hope it makes sense to you, but at least you know that I’m not pretending to have the actual truth.
Robin Lindley: And you have a wonderful sense of humor and self-irony. You share setbacks as well as discoveries.
Dr. Lone Frank: I think that gives it more meaning. It’s like a detective—the person who is trying to figure out what happened.
Robin Lindley: You’ve remarked on how visual this story is. I look forward to the illustrated version—that is, the documentary that you’re now making. You’ve produced other films on scientific subjects. How did this film on deep brain stimulation come about?
Dr. Lone Frank: I’m basically the type of person who likes to do different things and move on, and not just do the same things over and over again. I write for a living. I do a weekly radio program. And so on.
Film fascinated me. I watch a lot of film. I watch a lot of documentaries. I see good stories treated very efficiently in film. And I’ve worked with award-winning Danish documentary director, Pernille Rose Grønkjær, who’s internationally known and very talented. We got together to do a film based on My Beautiful Genome, my book about personal genomics. That became a film, Genetic Me, which won an AAAS-Kavli award for best documentary on science in. It also won several French awards and was shown in a range of different countries.
We wanted to move on and do a feature-length film on the story of deep brain stimulation today because we both thought that the story hadn’t been told and it’s very visual. So we are filming new treatments and deep brain stimulation procedures and top researchers in the U.S. and around the world. We saw several operations and how patients acted before the operation and then how they reacted after, and how they actually experienced having the device in their brain. And we are trying to get permission to use the original Heath footage. And we talk to people who have known Heath. I think it will be a very interesting take on him and a subtle and nuanced take on him.
I have to say it irritates me that a lot of stories today have to be black or white. Heath has to be either a monster or a hero. You get so tired of it because that’s not reality. Never. There are always nuances, and that’s what makes life interesting and it’s what makes stories and other people interesting. We try to get the story in the European way. We try to get “the more.” I think it’s an interesting project.
Robin Lindley: Your view also speaks to the rigid polarization we see in many ways in societies today.
Dr. Lone Frank: I think you’re right. The message of stories today is that they have to be one thing—good or bad, black or white, monster or hero. You can’t have nuance.
Robin Lindley: How does your documentary work compare to writing the book? I realize you’re very busy with the film now.
Dr. Lone Frank: I’m sitting here today writing the manuscript for the film, so we are quite busy.
The book and the documentary are very different. Writing the book took me going out and talking to people and reading and reading sources of all kinds and then trying to figure out what was happening. Getting a perspective on it. Interpreting the sources and what they are talking or writing about. That’s a very lonely and very controlled process. It’s all about me and what I do.
Filming, on the other hand, is all about a ton of people working together. I’m there with my stories and writing the manuscript and doing interviews. The director is there watching and trying to visualize the story. We have a very talented photographer who interprets the story in visual ways. What kind of images will we use to evoke emotions? And the whole production side is about coordinating so many people in various countries. It’s just such a big endeavor compared to writing a book.
Robin Lindley: Some people may see your book and, without reading it, assume that you’re an advocate for deep brain stimulation. But that’s not what you’re doing at all.
Dr. Lone Frank: What I’m finding with the reviews that have come out is that people read into the book whatever they want. That’s strange to me. There was a very positive review in Nature by a scientist working with deep brain stimulation in Geneva. He praised the book and the writing of it and then he went to say that Robert Heath was doing terrible things and that whatever is happening today is important and very ethical. No, that is not my message and not my agenda.
Another example was a really vicious review in the Wall Street Journal by a sociologist who had written about psychiatry in the old days and how awful it was. All he sees in the book –and he knows nothing about deep brain stimulation and doesn’t go into it—is that I have a more positive take on this historical figure than what he and his cronies are used to. So, he hates the book.
So, everybody just reads into it whatever their own agenda is, and that just irritates me that people can just read one thing. I’m saying different things and I’m pointing out parallels between history and now. They want Heath to be a monster or Heath to be a hero or Heath to be unproblematic. Those are not the case.
Robin Lindley: Do you have any concluding words for readers or anything else you’d like to add about your work?
Dr. Lone Frank: I hope there will be readers for this book because I’m trying to make people think about themselves and about the past. I think it’s also important to say—and this is not usually said about nonfiction—I try to write to make a good read. I would like to have my books read like a good novel. Often, nonfiction is about the content and not about the form at all. I really try to write well, and I think that’s important.
Robin Lindley: Thank you Dr. Frank for sharing your thoughtful comments and insights and congratulations on your illuminating book. I look forward now to your documentary.
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