/ ethics

Far from the Tree: Parents, Children and the Search for Identity

My GoodReads rating: 5 stars

"Far from the Tree: Parents, Children and the Search for Identity" is a tough read. An anecdote-heavy survey of a wide range of conditions from deafness and dwarfism to schizophrenia and genius, this book tells the frequently heartbreaking story of families struggling to make sense of these differences.

Solomon (Yale '85) devotes considerable focus to the tension between identity and illness. It's a fascinating and ambiguous conflict - and one particularly relevant to our society's current obsession with identity politics. I've always been a believer in the Western quest for the perfectibility of man, so many of the chapters in this book were especially challenging for me. The idea that one should accept limitations rather than trying to overcome them still feels wrong to me, but Solomon makes a compelling case that much harm often comes from attempts to "fix" these conditions.

I was particularly affected by Solomon's observations on the parents of children with these conditions. While many parents claimed that they experienced profound personal growth and wouldn't have had things any other way, many others desperately admitted to thinking that killing their child might be the best outcome for all parties. There is such tragedy in all of these cases - it left me wondering what I would do in such a situation. There seem to be only hard choices.

His chapters on physical conditions, mental illnesses, and musical prodigies were quite strong. His "rape", "criminal", "transgender", and "father" (about his own exceedingly unconventional reproductive strategy) chapters were less compelling. A chapter on homosexuality was absent - conspicuously so because Solomon is gay himself.

Overall though, this book was not only thought-provoking but emotionally powerful as well. It revealed a whole world that I had little prior understanding of and did so in a way that was brave, balanced, and thorough.

My highlights below:


Son

We depend on the guarantee in our children’s faces that we will not die. Children whose defining quality annihilates that fantasy of immortality are a particular insult; we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do. Loving our own children is an exercise for the imagination.

The psychoanalyst D. W. Winnicott once said, “There is no such thing as a baby — meaning that if you set out to describe a baby, you will find you are describing a baby and someone. A baby cannot exist alone but is essentially part of a relationship.” Insofar as our children resemble us, they are our most precious admirers, and insofar as they differ, they can be our most vehement detractors. From the beginning, we tempt them into imitation of us and long for what may be life’s most profound compliment: their choosing to live according to our own system of values.

Often, however, someone has an inherent or acquired trait that is foreign to his or her parents and must therefore acquire identity from a peer group. This is a horizontal identity. Such horizontal identities may reflect recessive genes, random mutations, prenatal influences, or values and preferences that a child does not share with his progenitors.

The exceptional is ubiquitous; to be entirely typical is the rare and lonely state.

Labeling a child’s mind as diseased — whether with autism, intellectual disabilities, or transgenderism — may reflect the discomfort that mind gives parents more than any discomfort it causes their child. Much gets corrected that might better have been left alone.

A similar duality obtains in this matter of self. Many conditions are both illness and identity, but we can see one only when we obscure the other.

Having exceptional children exaggerates parental tendencies; those who would be bad parents become awful parents, but those who would be good parents often become extraordinary.

Treating an identity as an illness invites real illness to make a braver stand.

The reasonable corollary to the queer experience is that everyone has a defect, that everyone has an identity, and that they are often one and the same.

A friend who thought Gay Pride was getting a bit carried away with itself once suggested we organize Gay Humility Week. It’s a good idea, but its time has not yet come. Neutrality, which appears to lie halfway between shame and rejoicing, is in fact the endgame, reached only when activism becomes unnecessary.

Although men who murder usually target people not related to them, nearly 40 percent of women who inflict death kill their own babies. Reports of human children discarded in Dumpsters and the overburdened foster-care network point to the ability of human beings to detach.

Modern life is lonely in many ways, but the ability of everyone with access to a computer to find like-minded people has meant that no one need be excluded from social kinship.

Freud posits that any declaration of love masks some degree of odium, any hatred at least a trace of adoration. All that children can properly require of their parents is that they tolerate their own muddled spectrum — that they neither insist on the lie of perfect happiness nor lapse into the slipshod brutality of giving up.

There is no contradiction between loving someone and feeling burdened by that person; indeed, love tends to magnify the burden. These parents need space for their ambivalence, whether they can allow it for themselves or not. For those who love, there should be no shame in being exhausted — even in imagining another life.

The Nobel Prize–winning geneticist James D. Watson, who has a son with schizophrenia, once told me that Bruno Bettelheim, the midcentury psychologist who asserted that autism and schizophrenia were caused by poor parenting, was “after Hitler, the most evil person of the twentieth century.” The attribution of responsibility to parents is often a function of ignorance, but it also reflects our anxious belief that we control our own destinies.

People with disabilities make up the largest minority in America; they constitute 15 percent of the population, though only 15 percent of those were born with their disability and about a third are over sixty-five. Worldwide, some 550 million people are disabled.

Taking care of disabled children causes your biological age to outpace your chronological age, which is associated with premature rheumatic conditions, heart failure, reduced immune function, and earlier death through cell senescence.

The disability rights movement seeks, at the most basic level, to find accommodation of difference rather than erasure of it. One of its signal successes is to understand that the interests of children, parents, and society do not necessarily coincide, and that the children are the least able to stand up for themselves.

As recently as 2006, the Royal College of Obstetricians and Gynaecologists in London proposed that doctors consider killing infants with extreme disabilities.

In his classic work Stigma, Erving Goffman argues that identity is formed when people assert pride in the thing that made them marginal, enabling them to achieve personal authenticity and political credibility. The social historian Susan Burch calls this “the irony of acculturation”: society’s attempts to assimilate a group often cause that group to become more pronounced in its singularity.

Because most people can walk, being unable to walk is a disability; so is being unable to hear; and so is being unable to decipher social cues. It’s a matter of votes, and the disabled question these majority decisions.

There is a problematic collision between feminism’s prioritizing of legal abortion and the disability rights movement’s opposition to any social system that devalues difference.

Although we have moved in recent decades away from illness models and toward identity models, such a shift is not always ethically defensible. After I had come to see deafness and dwarfism and autism and transgenderism as identities worthy of appreciation, I came up against the pro-ana and pro-mia movements, which seek to remove the negative associations around anorexia and bulimia, promoting them as lifestyle choices rather than illnesses. Pro-ana and pro-mia websites offer “thinspiration” tips on crash diets, review use of emetics and laxatives, and validate competitive weight-loss postings. People who follow the advice on such sites may die: Anorexia has the highest mortality rate of any mental illness. To propose that anorexics are merely exploring an identity is as morally lax as accepting the belief of gang members that they are merely pursuing an identity that happens to entail killing people. It’s clear that identity is a finite concept. What’s not clear is the location of its boundaries.

Recent academic work suggests that people who know their condition to be irreversible are happier than those who believe their condition may be ameliorated. In such cases, ironically, hope may be the cornerstone of misery.

People of higher socioeconomic status tend toward perfectionism, and have a harder time living with perceived defects.

Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources.

A child may interpret even well-intentioned efforts to fix him as sinister. Jim Sinclair, an intersex autistic person, wrote, “When parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.’ Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”

Though I have gathered statistics, I have relied primarily on anecdotes because numbers imply trends, while stories acknowledge chaos.

Delusions of mental health are more robust. If you believe that your experiences have vitalized you, then they have; vitality is an interior state, and experiencing it is its own truth.

Life is enriched by difficulty; love is made more acute when it requires exertion.

Nirvana occurs when you not only look forward to rapture, but also gaze back into the times of anguish and find in them the seeds of your joy. You may not have felt that happiness at the time, but in retrospect it is incontrovertible.

This book’s conundrum is that most of the families described here have ended up grateful for experiences they would have done anything to avoid.

Deaf

Alexander Graham Bell led the nineteenth-century oralist movement, which culminated with the first international meeting of educators of the deaf, the Congress of Milan, in 1880 and an edict to ban the use of manualism — a disparaging word for Sign — so that children might learn to speak instead. Bell, who had a deaf mother and a deaf wife, disparaged Sign as “pantomime.” Appalled by the idea of “a Deaf variety of the human race,” he founded the American Association to Promote the Teaching of Speech to the Deaf, which sought to forbid deaf people to marry each other, and to keep deaf students from mixing with other deaf students. He asked that deaf adults undergo sterilization and persuaded some hearing parents to sterilize their deaf children. Thomas Edison jumped on the bandwagon to promote an exclusive oralism.

Forbidding Sign does not turn deaf children toward speech, but away from language.

Geneticists long dismissed Alexander Graham Bell’s anxiety about the creation of a deaf race, but it appears that the residential school system, which allowed deaf people to meet and marry one another, may have doubled the rate of the deafness-related DFNB1 gene in America over the past two hundred years. Indeed, the worldwide prevalence of deafness genes seems tied to historical situations in which deaf people reproduced together. Blind people have not necessarily married other blind people, but language issues have inclined deaf people to marry one another. The earliest example of this is the deaf community that thrived under the Hittite empire thirty-five hundred years ago, which is now believed to have concentrated and spread the 35delG mutation.

Only Sweden has a law that requires such parents to meet with representatives of the Deaf community and learn about their lives before making this major medical decision for their child.

Would the world be better with more cultures in it? I believe it would.

The loss of diversity is terrible, but diversity for the sake of diversity is a lie.

Dwarfs

The average height of a female achondroplastic dwarf is four feet, and of a male, four foot three. There are more than two hundred thousand people of short stature in the United States, and Victor McKusick, a geneticist specializing in diseases of connective tissue, has estimated that there are several million worldwide.

LPA and similar organizations can be a blessing, though they can, equally, be a trial; Ablon points out that attending LPA can traumatize people who have blamed all their problems on their dwarfism, and who must now come to terms with personal flaws.

A 2005 SEC investigation into excessive and inappropriate gifts to securities traders found dwarf-tossing among the festivities featured at a lavish, $160,000 stag party financed by Fidelity Investments for one of its star performers.

Clinton Sr. agreed, “I have to work with new, young guys on the job, and when they’re lazy or say they can’t do certain things, I don’t tell ’em it’s my son, but I mention that I know someone that it takes half an hour to get dressed in the morning, just to get outside and breathe fresh air. ‘You guys have two hands, two arms, and a head. You’ve got every God-given tool you could have, and you’re wasting it.’” He paused. “And you know what? I used to waste it, too. I learned that lesson from Clinton myself.”

Down Syndrome

Anyone involved in any way with disability has come across “Welcome to Holland,” a modern fable written by Emily Perl Kingsley in 1987.

Seven to eight million Americans have intellectual disabilities; one out of ten American families is directly affected by mental retardation.

Oliver Wendell Holmes wrote in a 1927 Supreme Court decision, “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. Three generations of imbeciles are enough.” The forced-sterilization law, applied to people with many disabilities and disadvantages but particularly focused on those with intellectual disabilities, was not repealed for almost fifty years.

EI is the full expression of the nurture-over-nature argument—the ultimate triumph of psychoanalysis, civil rights, and empathy over eugenics, sterilization, and segregation. It grew out of a strange nexus of federal politics, parent activism, and psychology; it was a result of changing understandings of nondisabled children and new theories of general early education.

The Princeton ethicist Peter Singer has espoused the right of women to choose abortion through the end of pregnancy and to commit infanticide on newborns if they so choose. He has defended this position with the utilitarian argument that most women who eliminate an unwanted child will produce a wanted one, and that the loss of happiness of the child who is killed (whose life would have been unsatisfactory) is outweighed by the happiness of the healthy child who follows. Although Singer’s position is extreme, it reflects the pervasive devaluation of people with Down syndrome and the assumption that their lives are displeasing to others and to themselves.

But the acts of those women do not merely reflect the society; they create it. The more such pregnancies are terminated, the greater the chance that more will be terminated. Accommodations are contingent on population; only the ubiquity of disability keeps the disability rights conversation alive at all. A dwindling population means dwindling accommodation.

Targeted abortion had been expected to eliminate most of the population with Down syndrome, but the proportion of people born with the condition in any given year has increased or remained constant since testing was introduced. Such children are not evenly distributed across the population. Eighty percent of Down syndrome births are to women under thirty-five who have not had testing, and many of these are poor, as wealthier people are more likely to seek prenatal testing even if they are not in a risk category.

I’ve learned that no one says that nut has to be tightened in thirty seconds. If it’s tightened in five minutes, it’s all the same. Adam is my Zen master.

Some three-quarters of intellectually disabled people in the United States live with their parents.

Though spending on housing and treatment for people with intellectual disabilities in the United States averages $380.81 per person per day, the actual amount fluctuates widely from state to state and even from county to county.

Autism

Genius and criminality continue to appear at a constant rate. But, mysteriously, autism seems to be on the rise. Some experts argue that we are simply diagnosing it more frequently, but improved diagnosis can hardly be the full explanation for the escalation from a rate of 1 in 2,500 births in 1960 to 1 in 88 today.

Under the banner of neurodiversity, some people, many on the autism spectrum, have declared that autism is a rich identity, even if it is also a disability. The tension between identity and illness is common to most of the conditions in this book, but in no other instance is the conflict so extreme.

However, while Kanner became one of the most influential voices in psychiatry in the English-speaking world, Asperger’s work remained obscure and was available only in German until 1981. Like Kanner, Asperger believed that his patients were capable of great improvement. He also recognized their strengths, which often included creativity, a highly developed taste in art, and insight beyond their years. Asperger believed that the condition he had documented was an affliction of upper-middle-class people who pressured their children and then withdrew when their children disappointed them.

“Difficult as it is to admit this,” she said, “there are times when I’ve thought, ‘Would everyone have been better off?’” She described a trip to France when she visited the Musée de Préhistoire in Les Eyzies-de-Tayac. “I saw these bones of a mother holding a baby. They’d been buried in that unusual pose, and archaeologists were supposed to have been confused by it, but I wasn’t. I thought, ‘It’d just be so nice for something to just happen, if Anna Livia and I could just disappear like that.’ But I would never do anything to hurt her.”

"Do I love my kids? Yes. Will I do everything for them? Yes. I have them and I do this and I love them. I wouldn’t do it again. I think anybody who tells you they would is lying."

Autism may be genetic, determined by spontaneous new mutations or through inheritance; it is strongly correlated with paternal age, possibly because of germ line de novo mutations that occur spontaneously in the sperm of older fathers.

Others have proposed a theory of assortative mating, suggesting that people with particular personality types find one another more readily in our mobile, Internet-enabled era, so that two people with mildly autistic tendencies—“hypersystemizers”—produce children together in whom those traits are concentrated.

If one identical twin has autism, the chances are 60 to 90 percent that the other twin will be autistic as well, though the second twin may have a much milder or a much more severe version of autism. This indicates a strong genetic basis for the disorder. While traits such as eye color or Down syndrome are always shared by identical twins, many other characteristics are not shared absolutely, and the correlation for autism is the highest for any cognitive disorder — higher than for schizophrenia, depression, or obsessive-compulsive disorder.

If one fraternal (nonidentical) twin has autism, the chances are 20 to 30 percent that the other twin will have autism. Fraternal twins do not have identical genetics, but they do have near-identical environments. Nontwin siblings of children with autism are some twenty times as likely to have the condition as members of the general population. Even unaffected close relatives of people with autism are likely to have some subclinical social difficulties. All this suggests that there are strong genetic factors in autism, but that genes alone do not explain all instances of the condition.

August Bier, a physician practicing in the early twentieth century, said, “A smart mother often makes a better diagnosis than a poor doctor.”

The Autism Society of America estimates that one and a half million Americans are on the spectrum; the CDC says 560,000 people under twenty-one have autism; the US Department of Education says that autism is growing at a rate of 10 to 17 percent per year, and that numbers in the United States could reach four million in the next decade. Recent work suggests that more than 1 percent of the world population may be on the spectrum.

Researchers have estimated that between 20 and 50 percent of autism cases involve regression.

American law provides guarantees of education that are not matched by guarantees of medical care. Education is a government responsibility; medical care is a personal responsibility, controlled in large measure by insurance companies. For that reason, some advocates have preferred to keep treatment for autism in the arena of education rather than of medicine; so far, the pedagogic interventions appear to work better than the medical ones, so most current treatments are school-based. As with Down syndrome and many other disabilities, autism is best identified and addressed as early as possible.

In The Cherry Orchard, Chekhov said, “When many remedies are proposed for a disease, that means the disease is incurable."

Ari Ne’eman, who has Asperger syndrome and became a prominent self-advocate while still in college, uses the colloquial Aspie to describe himself. He said, “Society has developed a tendency to examine things from the point of view of a bell curve. How far away am I from normal? What can I do to fit in better? But what is on top of the bell curve? Mediocrity. That is the fate of American society if we insist upon pathologizing difference.

There is no university with a long history of educating autistic people (unless one counts MIT).

While the lives of many people who have autism remain somewhat inscrutable, the lives of people whose children have autism are mostly avowedly hard—some, excruciatingly so.

The world of disability has seen a great deal of filicide.

As the vast majority of these sentences suggest, the habit of the courts has been to treat filicide as an understandable, if unfortunate, result of the strains of raising an autistic child. Sentences are light, and both the courtroom and the press frequently accept the murderer’s profession of altruistic motives.

Schizophrenia

The last generation has witnessed a great social experiment called deinstitutionalization, which has removed people with acute mental illness from large state institutions, reducing the number of schizophrenics in long-term custodial care in the United States from more than half a million in 1950 to some forty thousand today.

E. Fuller Torrey, perhaps the most prominent critic of the social realities around schizophrenia, has said, “Freedom to be insane is an illusory freedom, a cruel hoax perpetrated on those who cannot think clearly by those who will not think clearly.

The most consistent postuterine environmental factor associated with a worsening of psychotic symptoms is the abuse of recreational drugs, including alcohol, methamphetamines, hallucinogens, cocaine, and marijuana, particularly in adolescence. When the Japanese gave methamphetamines to workers to increase productivity during the postwar recovery, they provoked epidemic levels of psychosis; although many people recovered after they stopped using the drugs, others had transient recurrence, and some had prolonged and even permanent impairment. A seminal study done in the 1980s with some fifty thousand Swedish conscripts showed that those who had used marijuana more than fifty times were six times more likely to develop schizophrenia.

I said to Charlotte, “You do have your hands full.” “Sometimes life isn’t about choices,” she replied.

In the United States, 150,000 people with schizophrenia are homeless; one in five people with schizophrenia is homeless in any given year. Such people are soon off their meds and back at the hospital for acute care. This serves neither their medical advantage nor the state’s economic interest.

Treating schizophrenia in the United States costs more than $80 billion a year, expenses that could be controlled with programs of active outreach to patients — most of whom, with supports to stay in appropriate treatment, could avoid both descents into raving hell and the ensuing expensive hospitalizations and incarcerations, largely underwritten by taxpayers. As things work now, it falls to families to organize support groups, construct community centers, create websites, and write memoirs full of advice.

Alison Jost, of Yale’s Interdisciplinary Center for Bioethics, wrote that it seems easy to compare Mad Pride with disability rights. “But in fact,” she went on, “no matter how destigmatized our society becomes, mental illnesses will always cause suffering.”

“Is there any positive in the relationship? Does it have its pleasurable moments? No. I would love him to do a minimum-wage job, bag groceries or something, and feel that he’s done something to give himself worth. But the better he gets, it’s almost the worse he gets, the sadder it is — because the ‘might have been’ just breaks your heart. Frankly, it would have been better if he’d died. Better for him, better for everybody. That sounds like the most terrible thing in the world to say. But his life is very, very hard for him, and it’s hard on everyone else. Why didn’t the truck just crush him completely if it was going to do this kind of damage?” Walter looked for a long minute out the window. “And now I’m going to cry. You know, it is a death. Joy is one of the few gifts we can give to our fellow human beings, especially our children, and I haven’t been able to give any to Peter.”

The facility containing the largest number of schizophrenics in the United States is the Los Angeles County Jail. At least three times as many mentally ill people are in jail as are in hospitals. Nearly 300,000 people with mental illnesses are in jail in the United States, most convicted of crimes they would not have committed if they had been treated; another 550,000 are on probation.

We may hesitate to cure some problematic illnesses because they are also rich identities, but schizophrenia cries out almost unconditionally for treatment. The remarkable parents I met during this research would be better off, as would their children, if schizophrenia didn’t exist. To me, their suffering seemed unending, and singularly fruitless.

Disability

Jerome Groopman wrote in the New Yorker, “Language is as vital to the physician’s art as the stethoscope or the scalpel. Of all the words the doctor uses, the name he gives the illness has the greatest weight. The name of the illness becomes part of the identity of the sufferer.” The sadness of a poor prognosis is vastly easier than the chaos of no prognosis. Once the course is clear, most people can accept it. Since knowledge is power, syndromes associated with dire prospects are borne more nobly than those of which little can be understood. Identity is a function of certitude.

"Our marriage philosophy is that we come first. If we don’t have a healthy marriage, our kids won’t have a healthy life.”

Disabled children are forever the responsibility of their parents; 85 percent of people with mental retardation live with or under the supervision of their parents, an arrangement that remains common until the parent becomes disabled or dies.

Max Nova

Max Nova

I love books! My reading theme for 2017 is "The Integrity of Western Science." I'm also the founder of www.SilviaTerra.com.

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