Nonfiction from Jonathan Gleason

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Annotations

1.

“I’m sending you a copy of our family tree,” my mother wrote to me one spring, after a series of deaths in our family had convinced her of the importance of heritage.

Her cousin was the last person to die before she finished—collapsed on a hiking trail while out for one of her daily, ten-mile runs. The paramedics weren’t able to reach her before activity in her brain had stopped. She lay in the hospital for several weeks before her body followed her brain out of this world. Her funeral was attended by her living son and twin daughters. She was buried next to her other children.

My mother inherited our family tree from her aunt—a woman who had traced our lineage back two hundred years in a fruitless attempt to be inducted into the Daughters of the American Revolution. During the brutal Midwestern winter that followed her cousin’s death, while wind whistled through loose panes, and snow piled up in dirty, ice-glazed drifts along the main roads, my mother installed herself in front of a computer, purchased a subscription to an online heritage database and began making calls to relatives, determined to finish the work her aunt had started.

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When I left for college, my father gifted me his copy of the American Heritage dictionary. It was bound in red leather with delicate ink illustrations in the margins. There is no illustration for the word family, but one of the entries reads: Lineage; especially, upper-class lineage. “Young men of family,” is offered as an example, as in he comes from an old Virginia family, as in he is well familied.

Long before my mother began working on our family tree, I suspected that our obsession with heritage was not exclusive to our time. I knew then that English-men in the 17th century were paying their way into written collections of the most noble family names in England. But what I discovered was that, by the 1840s, the first genealogical societies had already begun to appear in America—organizations that allowed members to claim lineage to English lords and exploited the desire for status through faked genealogies. Although upper class lineage has largely gone out of use as a definition for family, it lingers on in our obsession over ancestry.

The hobby that my mother diligently practiced leans on an idea far less innocent than we sometimes allow ourselves to believe. And it does not require extreme views to indulge in racially inaccurate thoughts about heritage. Before genetic testing was commercialized or ancestry databases made available online, white nationalists were waiting for the first fully sequenced human genome, ready to misuse the findings to argue for their agenda. But simply reading about DNA ancestry tests can increase a person’s belief in the inherent differences between races. It seems that though America likes to imagine itself through metaphors like melting pot and bread basket, we are far less likely to embrace these ideas when it comes to our own family. If one of the unspoken promises of heritage is to live forever through one’s family, then the other is the promise that we are part of the elect, essentially different from those who aren’t.

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I received our family tree several months after my mother’s message. It came in the mail as a stack of binder-clipped pages that smelled of fresh paper and ink toner. It traced our history through seven centuries, to villages in the German and Italian countryside, and it included a Virginian from Highland County who had participated in the revolutionary war, just as my mother had hoped. But I didn’t share her enthusiasm for any single name, what struck me as I poured over the document was the sheer volume of names. Names which sounded foreign and familiar in turns, but which were all in some way our own. Until that time it had not occurred to me that one family could contain so many, although I already suspected that the history we claim as our own is largely a product of who we want to be, not all the things that we are.

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2.

The doctor’s name was Bernard Sachs. He was the son of a Bavarian school teacher, a Jewish immigrant who had eloped first to Hungary and later the United States. Bernard was born in Baltimore in 1858. He attended Harvard and later studied medicine in Venice. While his brother Samuel co-founded the investment banking company Goldman-Sachs, Bernard was becoming one of the country’s leading clinical neurologists. In 1926, he published the book The Normal Child, a child-rearing manual intended for the general public, which, unlike popular opinion of the day, concerned with Freudian fixations and psychological realism, encouraged parents to trust their instincts when raising children. In a single generation, the Sachs became intertwined with so much of what we think of as American: financial services and telling others how to raise their children.

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In 1887, after examining three cases of an unknown neurological disorder in the same family, Sachs became one of the first doctors to describe the red spot and milk white halo on the retina of children plagued by what he would term amaurotic familial idiocy. This disease was marked by progressive degeneration in neurological faculties and death usually before the age of four, which is a medically euphemized way of saying these families watched their children suffer as they struggled first to stand, then to eat, then to breath.

It was a curious disease, the first Jewish Encyclopedia said, cropping up now and again mainly in the ghettos of newly immigrated Jewish families. And while Bernard may not have known it, naming in this case became a cultural and political act, affecting, forever, the way we would come to view this illness. “That Sachs would choose to include ‘familial’ in this disease name is significant,” the sociologist Shelly Z. Reuter writes, “because it set the stage for the medicalization of family and kinship.”

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Though some dictionaries place their entries in chronological order, the standard practice is to put the most frequently used definition first. Under the word family, one’s spouse and children is the first entry to appear in many of the dictionaries I consulted, but a family is more amorphous than a dictionary can capture in a single entry.

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My mother’s cousin and her husband had four children then separated. Their first-born child, a girl my age, never learned to walk or talk. She died before turning three and exists for me now only on the fringes of memories: stretched out, swollen and motionless, on the faded upholstery of a rocker where her mother would sit patiently by her side with a bottle and a square of stained washcloth, dampening her forehead. Their next children were a pair of healthy twins—blessings in a season of grief and my companions through the reeds and cat tails of lakeshores during family vacations. Their last child, however, was a son who was born as frail as a mouse, with skin like rice paper. He died before his second birthday.

I learned early on that funerals for children are distinctly different affairs. There are too few pictures to string along twine or tack up to corkboards, there are no happy anecdotes to recount, no comfort in the idea of a “full life.” Just a piercing sense of tragedy.

Driving home from one of the funerals I asked my mother what was wrong with my cousins, why had they died, but she never understood the science well enough to provide a satisfactory clinical answer. She would only insist they had a terrible disease. Without an answer to my first question, I asked my mother instead why some people died so young. She did not have an answer for this either. Instead, she said I wouldn’t have to worry about it, because all children who die go to heaven. And when I asked her when I would stop being a child, she became frustrated and snapped “thirteen.” What I remember most clearly about my cousins’ funerals are the miniature caskets, built for a child’s body, and the small room full of plush toys and plastic dishware where we were sent to play while our parents mourned. And I remember how, for the longest time, I hoped that I would die before thirteen to avoid the pain of uncertainty.

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3.

The disease Bernard helped discover eventually came to bear his name. Tay-Sachs disease replaced Amaurotic Family Idiocy, but it did not undo the disease’s long standing stigma or its association with Jewish families.

From the 1880s through the 1920s, as a wave of Jewish immigrants flooded New York, tension surrounding this group began to rise. Stemming the spread of Tay-Sachs disease was one of the arguments used to justify the systematic isolation of Jews in New York. But unlike some other diseases, Tay-Sachs does not respond to normal methods of containment. It arises from isolated populations, and it cannot be eliminated simply by maintaining a strict quarantine. So, the best way to prevent Tay-Sachs is through education and genetic testing before a couple decides to conceive. But even if early 20th century New Yorkers didn’t understand this, their attempts to limit the spread of Tay-Sachs through isolation were only an easily available excuse for the hatred that already existed. A hatred that recalled old fears about Jews as well poisoners. As Susan Sontag reminds us, “Epidemic diseases usually elicit a call to ban foreigners, immigrants. And xenophobic propaganda has always depicted immigrants as bearers of disease.” And in this instance, the disease these foreigners bore was used to cultivate fear about a particularly white concern with purity and corruption. While fear of diseases such as Typhus, Tuberculosis and Cholera posed a threat of foreign infections in America, Tay-Sachs, with its roots in the still nebulous realm of inherited disorders, reified fictions about Jewish blood, while also presenting a far more metaphorical threat to the purity of an imagined American gene pool.

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From a distant part of my memory, I can still recall the lake house in the Ohio countryside where we would vacation when I was a child. The house boasted a small pond, a gravel beach, and a swan shaped paddleboat that lingered forever on the shore. Of the few snapshots I retain of this place, one is the vivid image of my mother leaned against a banister, talking to her sister, her Capris rolled up to expose white calves to the first rays of summer sun.

In the memory, I am standing behind them, listening for a moment, unseen in the backdrop. Their heads are tilted together in sisterly confidence. “I can’t believe Lori is pregnant again,” my mother says, “she got lucky with the twins, but who knows if this new child will have it to.”

“It should be illegal,” adds her sister. They both nod and stare down at the lake for a few moments, where my aunt is kicking around with her healthy twin daughters. Then, I creep across the boards of the porch and into the cottage, understanding, even in that moment, that I had intruded on some private judgment.

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Tay-Sachs is a rare disorder. The illness requires two parental carriers, it can lie dormant for a lifetime in those with only one of two necessary genes, and it can pass through generations without being detected, appearing as if from nowhere like an act of God. Neither my aunt nor my uncle considered themselves among the groups susceptible to the disease, so they were not quick to accept the diagnoses their children received. Our family, the implication went, has been Protestant for over two hundred years. We can trace our history back to the founding fathers. We couldn’t possibly have a Jewish disease.

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4.

Between 1912 and 1932, three international Eugenics Congresses took place in London and New York City. The logo of the second international congress was a thick tree with a banner reading “EUGENICS” along its boughs, and the caption “like a tree eugenics draws its materials from many sources and organizes them into a harmonious entity.” The language of these congresses was often cluttered with metaphors of cultivation—“only the healthy seeds must be sown,” reads the title of a poster from the Eugenics Society archives, as a fit young man walks over tilled land under a yellow sun, tossing handfuls of seeds over his shoulder—but they were more often venues of sterilization.

The United States was the first country to undertake programs of compulsory sterilization. And, like most dubious public health measures, the burden of these policies was born out by the already impoverished, disabled and disenfranchised. Between 1897 and 1981, sterilizations were carried out on the intellectually disabled, the physically deformed, the blind, the deaf and those suffering from epilepsy. Sterilizations extended to ethnic minorities such as African and Native Americans as well as anyone subject to a correctional facility.

In the early 20th century, at the peak of the movement, some 62,000 people, most of them women, were sterilized in the name of Eugenics. It was the 1942 Supreme Court decision Skinner vs. Oklahoma, which stated that sterilization practices in criminal populations could not exclude white-collar criminals, that thoroughly complicated the notion of sterilization in the minds of many Americans. It would not be until the end of World War II, when the policies of Nazi Germany came to light, that Eugenics and sterilization fell out of favor in the United States. Still, a significant number of sterilizations continued until the 1970s, and, as recently as 2010, women in a California prison were coerced into illegal procedures that produced permanent sterilization.

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A group of like things, reads another definition of family. Despite its pleasant coating of science and objectivity, this is the definition I have come to mistrust the most.

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Of course, we should also be willing to ask ourselves when it is morally permissible to make the choice to conceive. In her book The Risk of a Lifetime, the philosopher Rivka Weinberg addresses the ethical minefield of reproducing. Is it, for example, permissible to bring a child into the world if there is a good chance they will be born with a debilitating disability or live in abject poverty, she asks. What if the disability is not life threatening? What if the poverty is not abject? Weinberg lands squarely on the conclusion that it is unethical to reproduce if two partners are carriers for Tay-Sachs disease, but she also acknowledges that she is here to raise philosophical questions, not make practical prescriptions. A quiet acknowledgement, I suspect, of how fraught a task it is to tell people they should or should not reproduce.

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One afternoon, in the cottage at the lake, in a sitting room lined with paneled wood and shag carpet, I stood before a crib decorated with IV bags, churning machines, and dripping tubes. Alone in that room, I stared down at my cousin, two years old, nothing but bone and baby’s breath, translucent cheekbones making a sharp line beneath the skin, waiting for him to show some sign of life.

I must have stood at the crib long past when I should, long enough for my twin cousins to grow tired of the water and my aunt Lori to slip in from the porch to wash the sand from her feet, because, when I turned to leave, we came face to face. She was swollen from the early stages of pregnancy, frozen in the doorway, watching me watch her son. “I’m…” I began stammering something like an apology, though I didn’t quite understand what I was apologizing for, so we stood for a moment, caught in our small cocoon of silence. Then, more to herself than to me, she said, “If you’ve ever been too certain, have a child.”

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5.

There is, of course, no such thing as a Jewish disease. Our genes are at once more complicated and less unique than we often believe. Genetic diversity in humans accounts for less than one percent of our genome, and “race,” as the anthropologists Alan Goodman writes, “fails to explain the vast majority of human genetic diversity.” Individual differences within any given population are greater than any difference between those populations, and there is no meaningful grouping of traits in any of the categories that we have historically described as race. Tay-Sachs itself is known as a single-gene trait. It does not correspond to our social constructions of race, and relates to no trait beyond its own manifestation.

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No one is sure where Tay-Sachs comes from, or more accurately, where and when any of the genetic mutations first emerged, but several theories exist. Reading through a list of theoretical genetic models, I can only guess at terms like hybrid-vigor and purifying balance, but I find one theory most compelling.

In his book The Missing Moment: How the Unconscious Shapes Modern Science, the biologist Robert Pollack suggests that particularly brutal 15th century raids on Jewish settlements left only a few thousand surviving families who rebuilt a community from decimated lives, from a diminished pool of genes. My understanding is only as complete as to say that within a small population traits are amplified, allowing mutations to emerge and take hold as the population grows the way a tiny mark made on a deflated balloon with expand into a large, pale circle of ink when inflated.

Pollack’s theory has its ugliness. If it’s true, then so called Jewish diseases are evidence not of threats or polluting forces, but of an ancestry fraught with massacres. This is the tautology of our prejudices: our hatred and violence spawns the traits we will later use to justify our hatred and violence. But the theory also has its beauty. There is a final definition of family in my dictionary. An elegant definition, that is powerful in its brevity. Family, the entry reads, all the descendants of a common ancestor. If our attempts to categorize ourselves by name or trait are doomed from the start, if a rare disease can appear like an act of God, unexplainable, untraceable, in the most unlikely place, then perhaps we can all be read as family to one another.

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Jonathan Gleason is a recent graduate from Northwestern University. He loves work that pushes formal boundaries and makes good use of research. His essays have appeared in Pithead Chapel and Weirderary Magazine.