An Atlas of Toleranceby Orli Van Mourik
Far From the Tree
In 1968, in a tone of unassailable authority, an ethicist by the name of Joseph Fletcher wrote an article in the Atlantic Monthly stating that parents should feel no guilt “about putting a Down’s syndrome baby away, whether it’s ‘put away’ in the sense of hidden in a sanatorium or in a more responsible lethal sense.” He goes on, “It is sad, yes. Dreadful. But … [t]rue guilt arises only from an offense against a person, and a Down’s syndrome is not a person.” Today the idea of a leading moral authority sanctioning the murder of babies with Down syndrome seems monstrous, evidence of a malignant strain of prejudice that has more in common with Hitler’s Germany than modern-day America. So instinctive is the modern reader’s rejection of Fletcher’s words that it’s tempting to dismiss him as evil. But the vexing truth is that our moral compasses have a tendency to spin with the times. What now seems unassailably true—that a child with Down syndrome deserves the same basic protections as any other human child—is a concept that took decades to take root in this country. Forty years ago, chances are some of us would have been swayed by Fletcher’s argument, not because we were morally corrupt, but because children with Down syndrome still inhabited a gray area of personhood that made it alarmingly easy to rob them of their humanity.
Andrew Solomon’s opus, Far From the Tree, is an exploration of the lives of children with Down syndrome and a range of other conditions that have, at one time or another, placed them somewhere in this murky moral gray area—those deemed so “other” by the larger society that their very personhood is fungible and subject to change. Covering a dizzying range of subjects, from Down syndrome and dwarfism to autism and schizophrenia to criminals and the transgendered, Far From the Tree offers us a tour of the margins of human existence. Throughout the book, Solomon asks us to examine our own ideas about what constitutes personhood and to look at the moral ambivalence that often surrounds those who fall outside the norm.
Solomon has already received a great deal of praise for his shimmering prose and exhaustive research, but what’s truly remarkable about Far From the Tree is his personal investment. This is no academic exercise. Right away we understand that Solomon’s interest in society’s “misfits” is born from experience. As a gay man raised in an era when homosexuality was still widely characterized as, as one 1969 Time Magazine article put it, “a misuse of the sexual faculty . . . A pathetic little second-rate substitute for reality,” Solomon grew up believing that succumbing to his sexual proclivities meant “severing [himself] forever from the normal world.” He got his first taste of the world’s disapproval at home. His mother, despite her sophisticated New York sensibilities, could not abide her son’s more effeminate behaviors. As an adult, Solomon looked around and saw that living life as a gay man had become normalized in a way he never could have imagined. Having seen perceptions about homosexuality shift so dramatically in the span of his lifetime, Solomon became interested in charting the trajectories of other marginalized identities. If gayness can be mainstreamed, he wondered, to what extent can attitudes regarding other conditions evolve? Will deafness or dwarfism eventually come to be seen largely as alternative identities rather than disabilities? And at what cost? In accepting these conditions as normal we alleviate suffering, but do we also run the risk of jeopardizing medical progress? In Far From the Tree, Solomon seeks not so much to answer these questions as to articulate them in a way that paves the way for a broader conversation.
If there is one primal question Far From the Tree seeks to answer, it’s this: What is the trick to accepting someone who it would be far easier to reject? Like Fletcher, we are all, to some extent, creatures of our cultural moment. We live in a comparatively tolerant age, but if Solomon’s book demonstrates anything, it is that prejudice lingers everywhere. It comes in the form of physicians who indirectly promote the termination of babies with Down syndrome by pressuring parents to screen for the condition during pregnancy. It reveals itself in parental resistance to the introduction of learning disabled children into mainstream classrooms and the shroud of secrecy still surrounding mental illness. Perhaps most heartrendingly, we see it in the ongoing violence perpetrated against transgendered people of all ages. This book contains such a jaw-dropping array of human cruelty and callousness I had to put it down for days at a time to give the poison a chance to subside. Amazingly, in the face of all of this, the most salient feeling I was left with was hope. After 10 years spent researching and writing this book, Solomon’s faith in our better angels remains unshaken. This seems largely due to the feats of parental love he witnessed throughout the process. When it comes to combating intolerance and misanthropy, Solomon suggests parental love may be the great equalizer.
The seed for Far From the Tree was Solomon’s wish to make peace with his own upbringing. In exploring the experience of parenting children who are born different, he hoped to better understand the struggles faced by his own parents. What he learned is that it takes extraordinary endurance and bravery to raise a child with special needs. These parents must overcome not only the psychological hurdles that separate them from their children, but social stigma as well. When a baby is born with multiple severe disabilities, for example, a mother must contend with her own grief at the loss of the healthy child she dreamt of, the casual brutality of the medical establishment, the hushed silence surrounding the birth, and the reorientation of her universe around a child with overwhelming needs. Some parents in Far From the Tree bent under the pressure. But those who met the challenge often achieved a love transcendent enough to open doors for both themselves and their children. When Jason Kingsley was born with Down syndrome in 1974, the doctor informed his parents “this mongoloid” would never walk or speak. Instead of simply accepting this as gospel, his mother, Emily, took it upon herself to educate her son. A writer on Sesame Street, Emily understood how to engage children and she set about igniting a love of learning in her boy. By four, miraculously, Jason could read. By six, he could do basic math. By seven, Emily had arranged for him to make regular appearances on Sesame Street, a huge step forward in the humanization of children with Down syndrome. “If I had had an amnio . . . I would have terminated, and I would have missed out on not only what has been the most difficult but also the most enriching experience of my life,” Emily Kingsley told Solomon. This sense of gratitude is echoed over and over again throughout the book.
That said, Far From the Tree is no pie-eyed celebration of diversity. I’ve read a number of scathing reviews of the book by parents of disabled children. Their displeasure seems to arise mainly from Solomon’s unwillingness to elide the difficulties associated with raising these kids in favor of a more triumphant narrative. This is not Chicken Soup of the Misfit Soul. The book is chock-full of deeply moving portraits of parental love and tolerance, but these are presented side-by-side with detailed accounts of the turmoil, resentment, and confusion parents often face when wrestling with some of these conditions. We are treated to a full accounting of a mother’s agony as she attempts to parent her severely autistic daughter while facing her own mental unraveling; we meet another mother who, unable to recognize the humanity in a daughter born without a brain, opts to surrender her child to someone who sees a spark of life within her; we encounter several parents who feel, in spite of their love, that it would have been far better had their children never been born. Even as Solomon works to convince us that parental acceptance is the key to promoting tolerance, he provides us with example after example of parents and children who might have benefitted more from letting go.
Solomon also suggests that normalization can go too far. While we are ethically duty-bound to accept all aspects of the human condition, in Solomon’s opinion, we cannot allow acceptance to hobble progress. Throughout the book, he juxtaposes the benefits of disability pride movements with the need to continuously seek out advancements that would further enhance their lives. Some autism pride advocates argue that the condition is just an extreme expression of left brain character traits that have proven highly useful to the human species. But being proud of these traits should not preclude us from recognizing and addressing the deficits associated with autism. The deaf community has developed a rich and nuanced culture all their own, but preserving this culture should not come at the expense of helping children to hear better, as some of the more extreme proponents of deaf identity advocate. And the complications don’t end there. One of the most freighted chapters in the book, on crime, attempts to reconstruct what we have traditionally cast as a moral failing as a set of biological and culturally induced behaviors—as something close to an identity. The goal is not to sanction criminal behavior but to bring it out of the darkness in order to better understand and address it. The extent to which Solomon portrays the criminals he writes about as victims of bad wiring, bad luck, and insurmountable circumstances will strike some readers as an apologia. But he marshals enough facts about the failures of our current justice system to make a persuasive case for treating our criminals with more humanity.
The constant push-pull between instinct and intellect, acceptance and advancement makes reading Far From The Tree a uniquely riveting and ethically challenging experience. But in the end, it’s the book’s unflinching heart that makes the most compelling argument for tolerance. In lesser hands, Far From the Tree could have turned into the literary equivalent of the Mütter Museum: a grotesque exhibition of human misfortune. Instead, Solomon has given us a masterwork on empathy.
ContributorOrli Van Mourik