Mutants by Armand Marie Leroi

This post originally appeared on I Read Everything

Book: Mutants: On Genetic Variety and the Human Body

Author: Armand Marie Leroi

Type of Book: Non-fiction, genetics

Why Did I Read This Book: I initially thought this would be a good fit on my site for odd books because Amazon recommended this book when I purchased a book about carny culture. This book is not about “mutants” in the vulgar parlance wherein the term has come to mean “freaks” and as a result, it really is a better fit for this site. But the reason I read it initially was because I thought it far stranger than it was.

Availability: Published in 2003 by Penguin Books, you can get a copy here:

Comments: I am decidedly a liberal arts kind of woman. I managed to cram enough science into my head to make it (barely) through college and then promptly forgot all of it. Much science seems like magic to me, a sentiment that makes me sound really dumb, but I’m okay with that (though I do need to mention that I understand how magnets work). So it was a little bit of a shock when I realized this was not a book about carny folk and old side-show acts that featured “freaks.” I was intimidated by the book and put off reading it.

When I finally picked this book up and gave it a try, it was a marvel at how accessible this book made biology and genetics to a non-science person like me. Moreover, it was an engrossing book, as well. Biology in the micro is a dramatic thing and as Leroi makes the science clear enough that even I can understand it, he shows the drama that takes place in our genetic code. I wish this book, clear and elegant, had been my college biology text. I sure would have enjoyed the class a lot more.

This book really did lay out for me the logic in genetics, and how it is that genetic mutations help us “reverse-engineer” the body, giving clarity to genetic function that we might lack if the mutations did not exist.

Gain or loss, both kinds of mutations, reveal something about the function of the genes that they affect, and in doing so, reveal a small part of the genetic grammar. Mutations reverse-engineer the body.

Until reading this book, the concept that parts of an embryo develop in stages, that limbs develop at a different time than organs, didn’t really occur to me. And the fact that they do develop at different stages explains how it is a person can have a terrible mutation that affects their legs or arms but have a perfectly healthy heart. This may seem so elementary to others but to me it really was a revelation. Moreover, it was also sobering to realize how many mutations never come to light, as the mutation prevents life. It was quite interesting, seeing it from that perspective, that mutations that seem quite catastrophic to the person who is born without limbs, in terms of genetics are not that profound as they don’t threaten life.

Limbs have an extraordinary knack for going wrong. There are more named congenital disorders that affect our limbs than almost any other part of our bodies. Is it that limbs are particularly delicate, and so prone to register every insult that heredity or the environment imprints upon them? Or is it that they are especially complex? Delicate and complex they are, to be sure, but the more likely reason for the exuberant abundance of their imperfections is simply that they are not needed, at least not for life itself. Children may grow in the womb and be born with extra fingers, a missing tibia, or missing a limb entirely, and yet be otherwise quite healthy. They survive and we see the damage.

Despite what I was expecting from the title, Leroi discusses genetics in a manner that is nothing but respectful. He makes it clear that in a sense we are all mutants.

Who, then, are the mutants? To say that the sequence of a particular gene shows a ‘mutation’, or to call the person who bears such a gene a ‘mutant’, is to make an invidious distinction. It is to imply, at the least, deviation from some ideal of perfection. Yet humans differ from each other in very many ways, and those differences are, at least in part, inherited. Who among us has the genome of genomes, the one by which all other genomes will be judged.

The short answer is that no one does.

He also discusses the social implications of misapplying genetics, a section that was at times hard to read, and I will come back to how hard it was to read in a moment. In the meantime, here’s an example of what Gould would have called the the mismeasure of men:

Ever since Linnaeus divided the world’s people into four races – Asiaticus, Americanus, Europaeus, Afer – skin colour has been misused as a convenient mark of other human attributes. Linnaeus distinguished his four races not only by the colour of their skins but also their temperaments: Asiaticus was ‘stern, haughty, avaricious and ruled by opinions’; Americanus ‘tenacious, contented, choleric and ruled by habit’; Afer, seemingly devoid of any redeeming virtue, was ‘cunning, slow, phlegmatic, careless and ruled by caprice’. What of his own race? Europaeus, Linnaeus thought, was ‘lively, light, inventive and ruled by custom’. This was the beginning of an intellectual tradition that, via the writings of Arthur, Comte de Gobineau, the nineteenth-century theorist of Aryan supremacy, culminated in the most systematic chromatocracy that the world has ever known: apartheid in South Africa.

In amongst all this interesting and amazing (or at least to me) information in this book, there were some chunks of information that kept me thinking long after I stopped reading. One is that there is some belief and evidence that aging is, in fact, the result of genetic mutations that don’t manifest until we age or are, in fact, slow-progressing diseases. This was very interesting to me, the idea that perhaps one day death will seem as much a disease as cystic fibrosis. Also interesting was the idea that the most common trait among women who lived an exceptionally long life was being childless. Having children ensures your genetic code sustains itself in generations to come but giving birth requires much of a woman, so much in fact that the fewer children a woman has appears to lengthen her life (but in my soft science mind, I wonder how much childlessness has to do with increased education and social status, both of which are linked to decreased childbirth rates so bear in mind that it’s hard to show any direct causation). Of course, as a childless woman, this was very relevant to my interests, but I suspect in this book there is something that will be relevant to your interests as most of us have a family member with a condition caused by a genetic mutation, be it a mild or major issue, and we all certainly are getting older.

And almost as fascinating was Leroi’s examination of genetic mutations in history. This part of the book reminded me much of some of Jan Bondeson’s books, a respectful yet entertaining look at the various genetic mutations that affected body hair and skin color. I’ll never get tired of reading about the hirsute family in Burma.

But unexpectedly, there was a section of this book that has haunted me. I would suspect that most geneticists prefer not to think of or mention Josef Mengele, the mad doctor at Auschwitz who performed hideous experiments on Jews, the worst of his obsessions played out on twins, doing things that even then defied science, like changing eye color or trying to graft people together. Leroi recounts a chilling story easily as creepy as anything I have read in a horror novel. The Ovitz family were sent to Auschwitz during WWII. The family were Romanian Jews, but members of the family had a form of dwarfism, which caused normal body size but short limbs. Specifically, they suffered from pseudoachondroplasia, which is a dominant genetic condition.

The family became performers and despite moving around Europe before the war ended up in Auschwitz after German troops occupied Hungary and the family was captured. Because the family were so much smaller, they were housed together away from the other prisoners and while they were given enough to eat, “they paid for survival by being given starring roles in Mengele’s bizarre and frenetic programme of experimental research.”

As Elizabeth Ovitz would write: ‘the most frightful experiments of all [were] the gynaecological experiments. Only the married ones among us had to endure that. They tied us to the table and systematic torture began. They injected things into our uterus, extracted blood, dug into us, pierced us and removed samples. The pain was unbearable.’

Even after the terrible gynecological experiments ended, the Ovitz family still endured inhumane suffering.

‘They extracted fluid from our spinal cord and rinsed out our ears with extremely hot or cold water which made us vomit. Subsequently hair extraction began and when we were ready to collapse, they began painful tests on the brain, nose, mouth and hand regions. All stages of the tests were fully documented with illustrations. It may be noted, ironically, that we were among the only ones in the world whose torture was premeditated and “scientifically” documented for the sake of future generations…’

But as horrible as all of that is, that was not the creepy part.

The Ovitz family walked the the tightrope of Mengele’s obsessions for seven months. Once, when Mengele unexpectedly entered the compound, the youngest of the family, Shimshon, who was only eighteen months old, toddled towards him. Mengele lifted the child into his arms and softly enquired why the child had approached him. ‘He thinks you are his father.’ ‘I am not his father,’ said Mengele, ‘only his uncle’. Yet the child was emaciated from the poor food and incessant blood sampling.

When I read this book the last damn thing I expected to read was a passage wherein Mengele showed a doting affection towards a child he tortured. If anything, that made the man more of a monster, for had he unyielding hatred for the Jews he tormented and tortured, his behavior could in a terrible manner make sense. That he felt fondness and saw himself as a sort of uncle to a Jewish dwarf toddler makes him all the more inexplicable to me.

I think this is one of those books that has a passage that will stay with all readers. You just have to read it and determine what that passage is. I recommend this book and hope others read it and let me know what they think.

A Mind Apart by Susanne Antonetta

This post originally appeared on I Read Everything

Book: A Mind Apart: Travels in a Neurodiverse World

Author: Susanne Antonetta

Type of Book: Non-fiction, psychology, genetics, eugenics

Why Did I Read This Book: As a person who buys books with an almost indiscriminate abandon, I often find books on my “to-be-read” shelves and have little memory of buying them so I am unsure what initially drew me to this book. I read it after I found it when I was searching for a completely unrelated book. I tend to like narratives about mental illness so that was likely why I bought this book.

Availability: Published by Penguin Group in 2007, you can get a copy here:

Comments: Sigh… I think my love of books about mental illness and interesting mental states is pretty well established even though I have not been running this particular book site for even a year yet. I tend to cut books on these topics a lot of slack because people who have unique mental states also have a unique approach to writing. Sometimes you have to dig deep to come away with gems in such books, dealing with odd narrative streams or difficult prose, but more often than not gems are there. I suspect that for many Antonetta’s book has some gems, but overall, I found her narrative not worth all the digging. The structure of the book was often disjointed and rambling to the point that I found myself reading out loud in order to force myself to pay attention, and also to give the words some additional clarity. And worse, I often had no idea, even after reading aloud and concentrating deeply, what it was that Antonetta was trying to convey.

None of this should have been a surprise to me, really, because the first paragraph in the preface tells the reader very clearly that this is not a book written with us in mind, that this is a book that simply exists in its own right and it is our duty to make sense of it however we can.

I am asked, What is this book. And I want to say, Books are like children. They are what they are because they are not something else.

I find this to be the worst sort of speciousness. I suspect this may seem overly harsh, but everything is what it is because it is not something else. Evidently, the appallingly ugly light fixture in my dining room is like a child because it is what is is because it is not something else. And I guess I can say a disjointed, unclear book is a disjointed, unclear book because it is not a well-organized, coherent narrative?

Antonetta, a woman self-described with bipolar disorder, finds comfort discussing aspects of her mental illness with friends and those relationships sustain her. This is not a memoir of mental illness, though the approach is intensely personal and often involves a lot about Antonetta and those she knows. Rather, it is a book that makes assertions about the natural selection involved in mental illness, how the mentally ill may be responsible for shaping a surprising amount of the world, and that any genetic attempts to eliminate people who have mental disorders, autism or similar – the neurodiverse minds among us – could be disastrous for the entire world.

Yet despite this being a book with such a specific theme, the personal descriptions and her personal life were a large part of the book and the descriptions of her mind and the minds of her neurodiverse friends bordered on exotica. Though this is definitely, as Antonetta explains, “a book about different kinds of minds,” it is also a book about minds that call out to be understood in a way that eludes this book. I often felt underwater reading, as so much is hurled at the reader without a context outside of the ideas in Antonetta’s head. Little she says helps enable us to put these unique minds she knows in a thoughtful perspective. For example:

I e-mail N’Lili–who’s a many-head, or a man with different people inside him–up to three or four times a day. They are married to my cousin. I write them separately and together: in response they might say THIS IS US OR THIS IS VICKI OR ANNIE ASKED ME TO ASK YOU SOMETHING, LOVE PEG. WE ARE CHILDREN, they say, though they live in an adult male body

Then there is this:

[Discussing an e-mail with a friend who has Asperger’s] We talk like this a lot. Do you feel the number five is brown? Can you hold it when it comes to you, unassuming in its brownness? How does everyone resist the lusciousness of others’ minds, moving around us, with us, all the time, like a gallery of veiled art.

I think that Antonetta’s approach to her neurodiversity and the neurodiversity of others is a lovely trait. She sees neurodiversity as something that is necessary in life, possibly a function of evolution, providing necessary differing mindsets important to the arts and sciences. But part of this makes me nervous because for every person like N’Lili who functions and embraces his or her dissociative disorder as a form of neurodiversity, there is a woman like my roommate in psych lockdown who is jumping from one consciousness to the other, in a state of terror, unable to work, fearing homelessness and further alienation from her family. For every person who wonders if five is brown, there are people for whom mental illness, or neurodiversity, is a nightmare from which they will never wake.

I know Antonetta knows this fact. She has suffered and still does. And I’m glad she came out the other side with this sort of mindset. But I think I resent the idea that mental illness is a “lusciousness” because for many of us, mental illness is not an evolutionary step in natural selection but is a condition that drags us down and keeps us down. I assert that there is no “normal” mind, and we all have to find our own path through mental illness. But for me, mental illness has prevented me from doing what I want in the world, not served as alternative to regular thinking that enhanced the world around me. I suspect most people who have walked this path tell stories similar to mine.

But it is an interesting thought, that neurodiverse people, exhibit a form of natural selection. That people in the autism spectrum may be uniquely suited to the sciences. That bipolars show an amazing tendency toward producing art and literature. In fact, neurodiverse people may have played some key roles in developing the modern world.

Different minds create new memes, as necessary for the freshening of culture as new genetic combinations are vital to the freshening of the species. Bipolars–“restless and unquiet,” as one correspondent put it–may have helped with the spread of human culture, migrating frequently and often into new territories

Not entirely sure if I buy that but I also don’t know enough evolutionary psychology to argue with it. It’s hard to argue with the idea that diverse mental states create excellent art. It’s almost a cliché. But it’s true in a lot of respects, and Antonetta states outright that she sees the gifts as well as the challenges of mental illness and I respect that. But the examples she gives of bipolar artists is mostly a list of the damned.

The painter van Gogh was bipolar, as were Virginia Woolf, Georgia O’Keefe, Sylvia Plath, Gerard Manley Hopkins, Gioacchino Rossini and hundreds of other artists.

“Spring and Fall, to a Young Child” is one of my favorite poems and it contains the line from poetry I quote most often in my life: “It is the blight man was born for, It is Margaret you mourn for.” But would you really have wanted to have lived Hopkins’ life, with his manias that caused him to dehydrate himself to the point of illness, the deep unipolar horrors that he faced most of his short life? Would you really have wanted to live the lives of either Plath or Woolf, with the anorexia, the suicide attempts, the rages, the final desperations? It is a subjective point, to be sure, that such suffering is worth the art it creates, but who really would have wanted to be Sylvia Plath, alone, terrified, angry and willing to die, tucking towels under the door and opening windows in the childrens’ room so they wouldn’t inhale the gas? I am reluctant to grace mental illness with any sort of sanctity because while we get to enjoy the fruit borne from madness, the lives of those whose minds burned them out are often nothing any of us would want. Yes, I wish there was a cure for all mental illness and I know the best most of us can do is cope however we decide to cope, but I am uneasy as hell as seeing the bright side to any of this. “Yay, we got some poems before Plath gassed herself!” is not the way I want to look at this possible form of natural selection. That the world benefited from the sufferings of Ernest Hemingway, Anne Sexton, Abbie Hoffman and Edgar Allan Poe is, for many of us, a cold comfort when we realize we know how much misery they felt.

And this is a side note to this book but as a writer who lost my spark after years of struggle, depression and despair, I can tell you emphatically that being alive is better overall than writing my old brand of disturbing fiction. Perhaps I lacked talent and that is why I do not mourn my lost gifts, but I often fear that people who need treatment and can benefit from it won’t try because there is a party line that to be creative is to suffer and to risk pills means risking the spark to create. I have no idea if madness spawns great art – there have certainly been enough artists who were not mad – but the idea that it does sanctifies what seems like unnecessary suffering.

And as engaging as I found parts of this book, it began to slowly fall apart in subsequent chapters. Points are made over and over in different chapters, the focus of the chapters were at time fuzzy and at other times, Antonetta’s logic made no sense to me at all. For example, Antonetta follows the trial of a teenage neighbor who killed another little boy and we spend a lot of time reading about her reactions to the whole thing – the murdered child’s parents, the absence of support for the defendant and other musings that didn’t really play much into what I thought was the thesis of this book – the positive benefits of natural selection for forms of mental illness and the need to accept the neurodiverse without condemnation.

She relates to the testimony of how unkempt the defendant was, seeing parallels between his lack of self-care and her own. She feels a sense of sadness that the only person the defendant, Kyle, likely loved was his grandfather. But then she hits us with this:

What we had, with my neighbor Kyle’s tucked chin, cartoonish face: a boy who collected enough weapons to power a desert army and rare poisons, who taught himself as a teenager how to do a particular type of autopsy peculiar to the East Coast, studied Nazi killing, all with the intent to kill a child. My child as easily as anyone’s, I imagine, half a mile from his house.

What we had to explain him: ADHD; possibly poor parenting; possibly too little touch; a personality disorder that no doubt hundreds of thousands of people have; evil.

Then we have this:

…Kyle stands as a koan or theological knot unto himself, but he’s like one of those theologies that tell you that trying to understand the nature of the Trinity is like trying to carry the ocean with a small bucket, so I can’t go any farther than this; as Augustine said of evil, “Do not seek to know more than is appropriate.”

It is impossible to have had my mental health history and not read every book on the topic with intensity. So perhaps the average person may not have the incredibly visceral reaction I did to these passages. I try not to use the word evil because it is often a cop-out, an easy way to dismiss the need to understand things that are hard to comprehend. That Antonetta, who wants understanding of the lusciousness of the foreign mind, the mind that is not like others, yet approaches the issue of extreme mental illness and psychopathic fixations that led to murder with the word evil filled me with despair. The complex mind cuts both ways. If we are to accept the art and science that comes from neurodiverse minds, then we must make ourselves understand the destruction that comes from them, too. The madness that creates a body of literary work and the madness that causes one child to murder another are different sides of the same coin and you cannot spend one side without spending the other, and cheap words like evil to comprehend difficult situations do no one any good.

This book is not wholly without redemption. Though I clearly have taken exception to Antonetta’s use of the word luscious when describing chaotic minds, I always love accounts of how people with minds like mine describe what is going on with them. Some of her descriptions of her head resonate with me.

It’s a noisy, busy place in my head, at least most of the time.

Right now my mind’s in a phase of of furiously narrating in a you voice: you’d better put that back in the refrigerator, you need to try to sleep now. It’s kind of irritating, like having a mad mother on the inside of your ear. It doesn’t bother me much, any more than a cat who won’t stop meowing might. Minds, in my experience, are messy, loud places.

The type of discord in her mind is different than mine, but I am familiar with the sort of head that never stops talking to itself.

However, it’s interesting to me the sort of disconnect present in this book. Antonetta’s main theme of this book seems to be to discuss how people who are neurodiverse should be accepted as a positive force by those who find them foreign. Yet she seems shocked when a reviewer on Amazon comments that Dawn, a friend of Antonetta’s who wrote a book about her autism, seems utterly foreign. Antonetta says:

How strange to think of Dawn and me and all of our kin as aliens, as a different kind of human being, as if we’ve branched off like Neanderthals, or the hominids who lived 18,000 years ago and were nicknamed the hobbit people.

Surely Antonetta understands that neurotypical minds see people with autism, bipolar or unipolar disorder, or any kind of mental illness, to be alien. Isn’t discussing the ways that the neurodiverse differ from others one of the main themes in this book. Antonetta goes on tangents like this often, seemingly disingenuous to me. As I read over Antonetta’s tales of her youth, her journals, her reminiscences of the girl she once was, I felt odd with some of her statements in this book because it seems she was hyper aware of every terrible thing that her mind did to her, that she had plenty of language to discuss her turmoil even as a teen, she was completely aware how different she was from others around her, even from her own parents. So why the surprise that she and others like her are misunderstood and seen as the other by those with “normal” brains?

I think I lack a certain depth at times because I am rabidly unconcerned with how I became the person I am. I don’t care if I am this way because I inherited just the wrong genes, because evolution needs people like me, or if I was spoiled environmentally, and this lack of depth is why books like this annoy me more than they should. However, my distaste for investigating my own mental origins aside, this had the potential to be a very interesting book, discussing some thorny and fascinating topics. It just got too garbled in the execution. Antonetta’s presentation is all over the map, with ground already covered being covered again and again in a fragmented manner, with inconsistent conclusions, and far too much time dithering over “whither” when her fears for the future and conclusions seemed faulty to me. Her at times fey writing style was also not to my tastes. I don’t regret reading this book but I don’t think I will ever read it again. It was a lot of work to figure out what Antonetta was driving at, and I was left with a book that did not have much resonance with me when I finished it.

The Family That Couldn’t Sleep by D.T. Max

This post originally appeared on I Read Everything

Book: The Family That Couldn’t Sleep: A Medical Mystery

Author: D.T. Max

Type of Book: Non-fiction, diseases

Why Did I Read This Book: As a chronic insomniac, the title caught my eye. In a quick read of the synopsis, I realized it really was far beyond my little, “I can’t sleep,” problem, and it seemed extremely interesting. I had never heard of prion diseases before buying this book.

Availability: Published by Random House in 2006, you can get a copy here:

Comments: I will be the first to admit that while I find disease fascinating, I am not strong in science. So elements of this book required me to reread sections to understand fully how it is that prion diseases destroy the brain, what sort of substance prions really are, etc. However, as a person with an imperfect understanding of some science, I can say that D.T. Max does a very good job of making science accessible to a person like me.

The family that could not sleep is a family in Italy that suffers from a disease called Fatal Familial Insomnia. There are several other families in the world affected by the condition, so it is extremely rare. It is a condition that strikes family members generally in late middle age and causes them to begin to lose physical control of their bodies as they stop sleeping. They sweat, they develop a very distinct pinprick appearance to the pupils in their eyes, they stop sleeping, and in end stages, have virtually no control over their bodies. In many cases, those who suffered from it were assumed to be either crazy or chronic alcoholics, and there is not a thing that can be done to help them. So few people suffer from the condition, and a cure would be so expensive to find that there is little incentive for drug companies even to research the condition.

FFI is a genetically dominant, hereditary disease. As a person with the gene that causes the condition ages, something triggers prions, a mostly protein infectious agent, to cause the proteins in the brain to mis-fold. Proteins in the brain fold in a particular pattern – when that pattern is altered, it causes neurological damage, resulting in death. Suffers are generally dead within two years of showing symptoms and their ends are terrifying. Since the brain no longer works correctly, the pain and mental anguish sufferers experience cannot be controlled pharmaceutically. Some painkillers and sedatives actually make the symptoms worse. While FFI is a prion disease that is genetic, there are many other prion diseases out there that are contagious and this book explores how those disease became zootrophic – meaning jumping from animals to humans. It discusses in very accessible language how prions were discovered, the scientists who discovered the prion diseases, and the lives of those who became infected with prion diseases.

Max discusses in detail how one of the first recorded prion diseases, scrapie, evidently became the scourge of England when sheep began to be bred for meat yield. In the process of breeding for size, the sheep became bred to develop scrapie, a communicable prion disease that caused the animals to lose neurological function and die. Autopsied sheep show brains filled with holes where the mis-folding proteins destroy the tissue. Land where scrapie infected sheep lived and grazed has been left fallow for a decade or more, only to find the prion disease is still there. Once land is infected with scrapie, it seems unlikely it will ever disappear entirely, but luckily there are sheep that are still genetically immune to the condition and are not infected.

Prions are a tricky substance. They are not really alive – they are a protein but a protein is not a living substance. A thing that is not alive cannot really be killed, so as of now, there is no way to combat prions. Nothing can get rid of them. Some studies show that using quantities of bleach may be effective in controlling them but even those studies were largely inconclusive. Prion disease has been found when stainless steel surgical instruments were used on an infected patient, then completely sterilized afterward.