Desert of My Real Life











Unless you have been on an island somewhere lately, you probably know that Eunice Kennedy Shriver has been hospitalized for the past few days and died this morning at age 88.  The achievement she is most well-known for, of course, is founding the Special Olympics.  She often cited her sister Rosemary as the inspiration for founding the Special Olympics, a fact that has been mentioned many times in the past few days.  I heard an interesting comment about Rosemary on NPR today.  The reporter said that Rosemary herself lived a very long life but had to be institutionalized for much of it because of her mental retardation.  I think this is actually a false statement. 

By all accounts, Rosemary’s mental retardation was mild.  In fact, there is some dispute as to whether she was mentally retarded at all.  But as an adolescent and young adult, she had violent mood swings and became difficult to control.  Her parents heard about a radical new procedure that could mellow out those mood swings and met the man who performed the procedure.  The man they met was Walter Freeman, whom I have written about before.  He popularized the lobotomy in the United States and performed thousands of them, including one on Howard Dully when Dully was twelve years old.  Dully went on to write the amazing memoir My Lobotomy, revealing that he probably is able to function as well as he does precisely because the procedure was performed when he was so young and his brain was able to recover.  Rosemary Kennedy was not as lucky.  Freeman performed the procedure on her when she was 23 years old and it left her with the mental capacity of an infant, incontinent and unable to speak.  She was institutionalized for the rest of her life.  Rose Kennedy (Rosemary’s mother) is said to have considered Rosemary’s incapacitation via the lobotomy to be the first of the Kennedy tragedies.  So it was Walter Freeman and his revolutionary procedure that caused Rosemary to be institutionalized for most of her life, not her mental retardation.



My area of research when I was in computer science was artificial intelligence.  AI is a broad field with many subfields, each of which has many applications.  Within AI, I was particularly interested in pattern recognition via machine learning techniques. When I left computer science, I turned my research attention to the topic of this blog and began to focus more and more on the impact of technology on society and media technology issues.  So I was quite interested this morning when my favorite National Public Radio show, On the Media, broadcast a story that shows the connection between these two research interests.

Pattern recognition sounds like an esoteric subfield of AI.  But in today’s computer-focused society, there are many useful applications of pattern recognition.  For example, I worked on two problems in microbiology while I was a graduate student.  My master’s work involved looking for patterns in strands of DNA of an organism called Onchocherca volvulus which causes river blindness.  We were trying to determine whether we could determine the evolution history and path of the organism to help with understanding the epidemiology of the disease.  For my PhD, I worked on the famous “protein folding problem“, trying to predict the 3-dimensional structure of a strand of protein by looking at just the sequence of amino acids that make up the protein.  The theory is that if we can predict the 3-D structure, we can predict the function of the protein as well and the implications of that are far-reaching.  As I said, there are many practical applications of pattern recognition by computers.

On today’s edition of On the Media, there was a story that reminded me of the fact that pattern recogniton by computers is everywhere in our society.  The story was about a contest by NetFlix, the DVD rental site.  NetFlix allows subscribers to rate movies via a star system, where one star means “hated it” and five stars means “loved it”.  Based on the ratings that a particular subscriber has given a set of movies, NetFlix attempts to recommend other movies that the subscriber will enjoy.  NetFlix’s business model depends on these recommendations since a larger percentage of their movie rentals come from subscribers listening to these recommendations.  Without the recommendations, subscribers would likely run out of movies that they know they want to see and then would eventually give up their subscriptions.  But predicting what movies a person will like is a very difficult problem.  

NetFlix does a pretty good job with their movie recommendation system, Cinematch, but if they can make better predictions, they’re likely to hang on to more subscribers.  So they created a contest, offering a million dollars to anyone who can develop an algorithm that does 10% better in its predictions than Cinematch.  Apparently, a number of groups immediately were able to develop algorithms that were 5% more accurate than Cinematch.  Even getting to 8% more accuracy didn’t take that long.  But a number of intriguing issues made reaching the 10% mark difficult.  One of the most interesting is known as the “Napoleon Dynamite problem.”  Napoleon Dynamite is a quirky, independent movie that came out in 2004.  It seems that it is quite difficult to accurately predict whether a particular subscriber will like or dislike this movie.  In fact, two people whose likes and dislikes are quite similar can disagree drastically about Napoleon Dynamite.  So getting to the 10% mark will probably require a solution to the “Napoleon Dynamite problem.”

The contest closed a couple of days ago, although no winner has yet been announced.  NetFlix says that they received 44,014 entries from 5169 teams in 186 countries.  One of the requirements of the contest is that the winners must disclose their techniques to the world.  Although getting more accurate movie recommendations is not a  life or death problem, the solution to it is likely to provide insight into how to accomplish other pattern recognition tasks.  And that’s good news for all of us.



{June 4, 2009}   Changing Medical Technology

I just finished reading My Lobotomy by Howard Dully and Charles Fleming.  Howard Dully received a transorbital lobotomy (also known as an “ice-pick lobotomy”) when he was 12 years old.  The doctor who performed the lobotomy was the king of transorbital lobotomies, Walter Freeman.  The book chronicles Dully’s life as well as his search, more than 40 years after the lobotomy, for answers as to why this surgery was performed on him.  It’s a harrowing story, especially because by almost all accounts, Dully was a normal kid.  The problem in his life seems to have been his step-mother who for some reason just didn’t like him and was probably afraid of him because he was a big kid.

Antonio Egas Moniz was the pioneer of the lobotomy and in fact, received the Nobel Prize in Medicine in 1949 for his work in this area.  By the late 1950’s, with the introduction of drugs that worked far better than lobotomies, the procedure fell out of favor in the mainstream medical community.   In fact, some have characterized the lobotomy as the biggest mistake ever made by mainstream medicine.  My favorite quote about the lobotomy comes from Norbert Weiner who is the father of cybernetics.  He said on page 148 of his book Cybernetics, “…prefrontal lobotomy …has recently been having a certain vogue, probably not unconnected with the fact that it makes the custodial care of many patients easier. Let me remark in passing that killing them makes their custodial care still easier.”

Reading My Lobotomy is an eye-opening experience.  Throughout the entire book, I wondered where the authorities were.  Surely there were adminstrators at the hospitals where Freeman worked who realized that his methods for diagnosing patients as having major psychoses were problematic.  Why did they let him continue to practice for so long?  What about all those doctors that Dully’s step-mother took him to who said he was a fine, normal kid?  Why did none of them recognize that she was going to continue in her pursuit until she found the diagnosis she was looking for?  The problem, of course, is that at the time, a lobotomy could be prescribed for conditions as mundane as “youthful defiance” or even just “moodiness.”  There is no doubt that Howard Dully was a defiant youth.  Reading the book, I get a portrait of him as a really smart kid who was bored in school and who probably had attention deficit disorder as well as an incredible amount of stress as a result of being an abused child.  But the kind of trouble he got into was normal kid stuff and probably could have been dealt with by someone paying a little bit of attention to him and maybe challenging him a little more in school. 

The other question that kept popping into my head was whether things are better now.  Could this sort of thing happen today?  Obviously, there are not a lot of lobotomies performed today but kids are put onto serious psychotropic medicines all the time.  What kind of safeguards do we have in place to protect kids (or adults for that matter)?  Do we require multiple physicians to look at a kid before he or she is diagnosed as schizophrenic or bipolar or whatever?  My guess is that we don’t.  Although it seems like the effects of taking drugs for these conditions would not be permanent in the same ways that having a lobotomy would be permanent, some of the stigmatization that Dully describes would be present and very damaging simply with a diagnosis of schizophrenia or some other serious mental disorder.

One of the most moving parts of the book is the afterword to the paperback edition of the book.  Dully is contacted by two brain researchers to have a detailed MRI taken of his brain to determine the kind of damage that was done by the ice picks.  The researchers suspected they would find little damage because Dully seemed so normal, too normal for someone who has had a lobotomy.  What they found was brain damage that was so significant that if it had been done to an adult, that person would be a vegetable.  But because Dully had the surgery when he was 12, his brain was still maleable.  It adapted to the damage so that after 40+ years, he was a normally functioning adult.  Dully then says that he had always felt burdened by the lobotomy, like something really bad had been done to him as a child.  After the MRI, he realized that he actually was quite lucky that he had the lobotomy at such an early age.  If it had been done even five years later, he probably would never have left the institutions he grew up in.  He would never have had a life with a wife and kids and a job.  So he now sees his life as lucky.  It’s an inspirational shift in perspective, I think, and I’m not sure how many of us would be able to make that shift. 

From a technology standpoint, this story reminds me that we have developed lots of tools that we can use in a variety of situations.  But having the tools doesn’t mean that we should actually use the tools.  And when we do use the tools, we need to put into place significant checks and balances to avoid abuses of power and to protect the powerless as much as we can.  I don’t think we’ve really learned these lessons yet.

By the way, National Public Radio did a 22-minute documentary about Howard Dully back in 2005.  Here’s that story–I strongly encourage you to listen to it by clicking on “Listen Now” in the upper left corner of the page.



et cetera