Ian Brown: New thinking on the limits of a parent's love

The Globe and Mail

 

(Cinders McLeod/The Globe and Mail)

Cece Burns was three years old before a doctor thought to call her autistic. She has spoken four times in her now-teenaged life, always appropriately. She uttered her first words at 3, when her mother, Betsy, a novelist, offered her a cookie, and Cece said, “You eat it, Mommy.” She didn’t talk again for a year, until Betsy turned off the television and Cece said, “I want my TV.” Her parents still don’t know how much she understands, or if, as her mother puts it, “her soul is trapped.”

Story continues below ad

A lot of the rest of the time Cece behaves like a hellion, twining ribbons in her hands and screaming and spreading her feces and chaos and then laughing everywhere she goes, a poster child for defiance and unrelenting non-conformity. Her exhausted parents finally placed her in a home, but they keep the lock on their refrigerator as a memorial to their primal daughter.

“She forces the intellect to let go,” Betsy explains, loving but broken. “You retreat to an intuitive level because that’s the only way to read her.”

Cece is one of the more harrowing people in Andrew Solomon’s vast new book, Far From the Tree. But she is only one of the human outliers Mr. Solomon met over the past 10 years, interviewing 300 families of children whose lives lie galaxies beyond the boundaries of the normal.

Mr. Solomon comes honestly by his interest in difference, and its role in a world that looks askance: He is gay, and dyslexic. But wherever he aimed his attention – into the lives of dwarfs or the deaf, at families beset by Down syndrome or autism, through the darkness of schizophrenics or children with multiple severe disabilities, at prodigies or the transgendered or the children of rape victims or even families that have produced criminals – he found the same paradox: the unlikely spectacle of the children we figure must be hardest to love, being loved beyond measure.

Far From the Tree: Parents, Children and the Search for Identity is a book about how that happens (and occasionally doesn’t). At more than 900 pages, it promises to recharge the debate over what, if anything, makes up a normal family. But the book will also fuel a conversation we keep trying but are afraid to have, the argument about whether, in an age of light-speed medical and genetic advances, people with significant disabilities should be born at all; be repaired and cured; or simply be allowed to stay as they are.

It is a book about the amorality of chance in human conception, and what it teaches us – about the children that parents never imagine they will have, that no one ever hopes for, that very few can care for on their own. It’s about love, and how it manages to weather hurricanes.

I have a severely disabled son of my own, one who can’t talk or think or care for himself. Figuring out what worth he has as a human being, if his broken self has any value, has been an ongoing adventure, one I have also written about. Mr. Solomon made the journey in the opposite direction: He began to write about people who were different, and has ended up fathering a son. Somehow, along the way, like Cece’s mother, we both learned a language of the instincts.

So when Mr. Solomon was coming to Toronto a few weeks ago, we made a date to have coffee.

Andrew Solomon speaks in an upper-class Manhattanite’s half-drawl, in complete and fully punctuated sentences and paragraphs, as you might expect of a tall, dark, well-dressed Yale graduate in his early 40s. (He recently finished a PhD in psychology, on maternal attachment.)

He grew up in a well-heeled family connected to the pharmaceutical industry. He was already visiting gay bars in high school, slipping out while he walked the family’s Kerry blue terrier, at least when he wasn’t enrolling in hair-raising “cures” for his gayness (complete with prostitutes).

His sexual identity “appalled my mother and concerned my father,” though the latter accepted it more easily. He was called “Percy” and “faggot” at school, steadily bullied: one complication was paralyzing depression, for which he still reluctantly takes prescription drugs (his 2001 book The Noonday Demon is a widely admired memoir of depression).

He wishes he had not been abused for being gay, but, as he writes, “if you banish the dragons, you banish the heroes.” If Beethoven had been cured of what was likely his own autism, an expert in the book points out, he might have become a postal clerk. Which is easy to be grateful for, if you are not Beethoven.

Mr. Solomon’s sense of his own difference led him to write Far from the Tree. In the course of researching a magazine story about the deaf, “I thought it was very similar to my experience as the gay child of straight parents who had been mostly loving, but had their problems and issues with it,” he told me over a latte.

It was a gorgeous autumn afternoon, in the empty restaurant of a boutique hotel in downtown Toronto; someone seemed to be throwing plates in the kitchen. Still, I heard him add, “The experience I had paralleled the experience of the deaf.”

When a friend later gave birth to a dwarf, and led him to the proud identity politics of dwarfism, he realized he had stumbled on another colony of humanity that defined itself by difference.

“I thought: ‘It’s true of the deaf, and it’s true of the dwarfs, and it’s true of my experience of being gay – it must be true of a lot of other experiences too.’”

Try telling that to the mainstream – to us so-called normals, petrified as we are by the spectre of difference. The disabled frighten us because they remind us of how little control we have over our lives, how contingent and even undeserved our gifts are.

That fear frequently leads to a form of racism. Hitler killed 270,000 disabled people as “travesties of human form and spirit.” Chicago had a law that banned the deformed from being seen in public until 1973. As recently as 2006, the Royal College of Obstetricians in London proposed that doctors consider killing infants with extreme disabilities. Meanwhile, 15 per cent of North Americans and 550 million people worldwide are disabled.

The literature of disability – when anyone reads it – reflects our attitudes at any given moment in history. There are three main shelves in that vast library. One is filled with academic studies. The second is packed with memoirs. Some are good; most are sentimental accounts of disabled lives as “special” gifts from a “special” God for “special” parents. They tend to be the kind of book you want to throw across the room (possibly at your disabled child), but their intention is understandable: to plead that difference can be something other than an illness, and that the lives of the parents who write them are something more than a waste of life on a futile cause.

Far From the Tree wants to live on the third shelf, with the big books, the ones that aim to place disability and difference within the widest possible historical, social, medical and intellectual context. Sometimes these books change the world.

Philippe Pinel’s 1794 Memoir on Madness more or less invented institutional care, a radical new way to house the mentally disabled – prior to Pinel, they were left to live and die in the streets of Paris. Michel Foucault’s The History of Madness took issue with Western civilization’s willingness to demonize difference: the disabled might be mistakes, Foucault argued, but mistakes are how we change, how we become something new and better.

Darwin believed the most fragile human beings were essential to our ethical evolution, to the emergence of conscience and altruism in the species. And Jean Vanier, the great living philosopher of disability, made the case for equality in Becoming Human.

With its monumental thoroughness – it sometimes feels like a beautifully written Sears catalogue of weirdness – Far From the Tree aims to go further and present difference, whether in a piano prodigy such as Lang Lang or in a child who can’t move her limbs, as a valuable identity.

“The world is made more interesting by having every sort of person in it,” Mr. Solomon writes. “That is a social vision. We should alleviate the suffering of each individual to the outer limits of our abilities. That is a humanist vision with medical overtones.” He insists that they are not mutually exclusive.

With every cast-out type Mr. Solomon found, he uncovered a community that wanted to revel in the child’s “exceptionality” (the current euphemism). Many of these communities did not want to be lumped in with the other groups in the book: Deaf people did not want to be compared to schizophrenics; parents of schizophrenics were “creeped out” by dwarfs. Each community sees itself as special.

In the world of the Deaf – capitalized, to formalize it as a separate political identity – Mr. Solomon discovers that more than 90 per cent of deaf children are born to hearing parents. But American Sign Language, invented 200 years ago by the deaf for the deaf, is Deaf culture’s most respected communication system. It has helped deaf people achieve at the highest levels in the non-deaf world.

Today, “an increasing number of deaf people maintain they would not choose to be hearing,” Mr. Solomon writes. He meets deaf couples who openly want to have deaf children, to populate their world with others who can experience what they believe to be a unique, valuable way of being.

“Over all,” Mr. Solomon told me, “and it sounds shocking, and I would not have believed it before I began this work – but Deaf culture seemed to me to be as valid as African-American culture. And in the same way that I don’t question that African-American people would like to have children who look like them and feel that they can convey a sense of cultural identity that will make those children do well, despite social prejudice that persists, even in the Obama era, against black people in America, I think that deaf people have the right to seek deaf children if that’s what they want to do.”

He finds the same unified political consciousness among dwarfs (200,000 strong) and among those with Down syndrome (the most common intellectual disability in the United States, where more than 400,000 people have it).

Seventy per cent of expectant mothers who receive a prenatal Down diagnosis abort. But others do not, and the U.S. national life expectancy of a Down person is now 50, and rising. A recent poll in Canada asked parents of Down kids if they would cure their child if it were possible. A quarter said no. The Down population is expected to double by 2025.

Even autism – still a mysterious syndrome, with an alarmingly wide range of severity and consequences – has its proponents in the “neurodiversity” movement, who claim it is a lush identity as well as a disability. (Mr. Solomon interviews Temple Grandin, and she makes a convincing, if atypically high-functioning, case.)

A million and a half Americans are on the autism spectrum. Its rate of occurrence (or at least diagnosis) is rising: one in 88 births today, versus one in 2,500 in 1960.

We may be afraid of people who look disjointed and discontinued and disabled. But we had better get used to them.

The most common question Mr. Solomon was asked as he wrote his book was which affliction he found most upsetting. His answer was schizophrenia, because it is degenerative, arrives late and replaces the person a family has loved with a being they no longer recognize. The transgendered children Mr. Solomon got to know – who feel to the point of despair that they have been born in a body of the wrong gender – seem almost (repeat, almost) blessed by comparison.

But the village fury they face is another story. In Atlanta, 10-year-old Paul decides he will henceforth attend school as Paula, in a dress. On the bus, a brother and sister lay their hands on Paula’s head and pray to God to turn her back into a boy. “I didn’t really mind,” Paula tells her mother later. “But does this mean they’re not going to be my friends?”

The most socially isolated cadres Mr. Solomon uncovers are children conceived during a rape, and children who have shamed their families by committing crimes. They, too, find themselves loved, but the odds are slimmer: Many raped mothers see their assailants every time they look at their offspring, and they are hardly prepared for motherhood.

More than 80 per cent of rapes are committed by someone the victim knows; half the victims are under 18, and a quarter are under 12. They result in as many as 32,000 rape-induced pregnancies every year. But at least a quarter come to term and are kept by the moms. Why? Because the mother has no access to birth control; because she is religious; because she wants lasting proof of what happened to her. And at least sometimes, because she feels called to love her kid.

Mr. Solomon introduces us to a young woman named Brenda Henriques. She was raped in her junior year of high school, and gave birth to a girl she named Rebecca. Four years later, Brenda marries a man named Chip, who raises Rebecca as his own. But when Chip and Brenda split, Rebecca, now 15, is herself raped by one of Brenda’s new boyfriends – whereupon Brenda tells her how she was conceived. Rebecca is furious, and proceeds to have two children by the next two men she meets.

A nightmare. But the grandchildren are for Brenda, now 35, her reason for being, a chance to do motherhood again, properly. “I didn’t think that I could love like that,” she tells Mr. Solomon.

Even Sue and Tom Klebold, the parents of Dylan Klebold – one of the two teenagers who killed a dozen students, a teacher and then themselves at Columbine High School in Colorado in 1999 – keep their late son in their hearts. Mr. Solomon makes it clear, sifting the evidence of Dylan’s stellar record, that there was no way the Klebolds could have foreseen the shooting, though many jumped to the opposite conclusion.

But even here, in the face of national tragedy, the rosy filter of parental love tints their outlook. “I am glad I had kids and glad I had the kids I did,” Sue Klebold tells Mr. Solomon. “Because the love for them – even at the price of this pain – has been the single greatest joy of my life. … I know it would have been better for the world if Dylan had not been born. But I believe it would not have been better for me.”

How, why, by what mechanism can a parent think that way?

The history of disability has always been a struggle between those who want to eliminate or cure it, or at least make the disabled appear as undifferent as they can; and those who, while they also seek cures, want to recognize the disabled as contributing human beings just the way they are. It’s hard to predict who will end up in which camp.

Alexander Graham Bell – who had a deaf mother and a deaf wife – was an enemy of sign language, as he thought it would hold the deaf back. Activists in the Deaf community fear cochlear implants because they threaten to kill Deaf culture (the number of people classified as deaf is declining). Down syndrome parents object to cheap, non-invasive prenatal tests, because they could render the Down population extinct; the pro-choice movement can make them nervous.

The question that terrifies every identity group Mr. Solomon found is this: If the afflicted are not worth keeping as they are, what will we do with the ones we can’t fix? In 1968, he reports, a father named Joseph Fletcher wrote in The Atlantic Monthly that no guilt ought to be felt putting a Down child in an institution: “A Down’s is not a person.” Peter Singer, the Australian moral philosopher and bio-ethicist at Princeton, has claimed that “killing a disabled infant is not morally equivalent to killing a person. Very often it is not wrong at all.”

Three-quarters of the intellectually disabled (and half to two-thirds of schizophrenics) live with their aging parents, in part because other accommodations are in catastrophically short supply. That is the choice we have made as a society, as a human community. As Mr. Solomon – always even-handed, never a blind advocate – points out, spending on housing and treatment of people with intellectual disabilities in the United States averages $380.81 per person a day. Are they worth it? Why or why not?

Tom Robards, a Wall Street businessman and the father of a Down child, offers one of the book’s most compelling answers. He would cure his daughter if he could – “but the diversity of human beings makes the world a better place, and if everyone with Down syndrome were cured, it would be a real loss. The personal wish and the social wish are in opposition. The question is whether we collectively learn more than we hurt.”

“There are some qualities that are generally acknowledged to be advantageous,” Mr. Solomon said as the sun began to go down and our meeting came to a close. “But that narrow notion of perfection is a difficult one. I think having the cochlear implants would be likelier to make a child’s life easier. But if I contemplate the idea of a society from which Deaf society is banished altogether, it seems to me like a very sad development. … The social good is not served by narrowing the range of human experience.”

Leonard Cohen sang it well in Anthem:Ring the bells that still can ring

Forget your perfect offering

There is a crack in everything

That’s how the light gets in.

Mr. Solomon begins Far From the Tree as an account of growing up gay with his parents. He ends it with the story of how he became a father – though by the time he finally had his family, its creation could have been the plot of a contemporary sitcom.

His boyfriend, John, was already the biological father of two children, Oliver and Lucy, parented by Laura and Tammy, lesbians in Minnesota. Then Blaine, a newly divorced college friend from Texas, asked Mr. Solomon if he would be the biological father of a child she would bear. After little Blaine’s birth, he married John and, in 2009, biologically fathered George, with a donor egg and one of the Minnesota couple as a surrogate.

It was the bottomless commitment of mothers and fathers who spent years raising disabled children that convinced him the venture would be worth it. He was impressed by “the valiance love takes.”

“Parenting had challenged these families, but almost none regretted it,” he writes. “They demonstrated that, with enough emotional discipline and affective will, one could love anyone.” They chose not to be embarrassed by their kids. “Fewer and fewer people,” Mr. Solomon concludes, “are mortified by who they are.” This is a good thing.

My own frequently mortifying disabled son has a strange habit. He likes to hang around with me and wait until I am not looking, then knock all the glasses off the nearest table, a lifelong act of dining-room terrorism he still finds very funny at 16. I used to think he was a junior psychopath. It was only when I stopped worrying about why he was not like everyone else that I began to see who he might be: My boy knows he is less capable than everyone else, but this is a chance for him to show me that he can outwit me once in a while – that just once in a while, we can be equals.

Why does the chance to be his equal – and that is the way the equation moves – feel so rare and valuable to me? For it is in those moments that I am grateful for the hell of his life, and might choose, insanely, to do it all over again.

Has he momentarily freed me from the relentless grind of survival, the list of expectations (good school? nice car? sexy partner? big bank account?) that make up the obligations of “successful” life? Has he just given me the chance to escape my own clutches and love him as he is, and hence myself as I am, rather than as the demanding world would have us be? Is it that simple? Somehow, he makes me feel him, and vice versa. That’s rare, in any relationship.

Of course, I might just be making it up – rationalizing the existence of a consciousness for my son. But Mr. Solomon thinks otherwise. Writing about the way the parents of the most remote and disabled children see motive and intention in their kids where outsiders see nothing, he cites Roger Penrose, a controversial Oxford-based mathematical physicist.

Prof. Penrose hypothesizes that the physical world and the realm of ideas are mysteriously but mathematically connected; “that the universe has a structural need for consciousness,” and so “the existence of anything proves its inevitability.” We are because we had to be; if I can manage to think it, it stands a good chance of existing.

And so my hapless, often happy son has a mind and intentions, because, watching him closely, I can deduce their existence, and present them to him. And I suspect he senses this, and is amused and grateful for my imputation of his motive, or in any event is thrilled to be included, and loves me for it, and I am (so) grateful and love him back.

From that perspective, Mr. Solomon concludes, the difficult love he witnessed again and again – and experiences, as a parent of “normal” children – made perfect sense.

“I want more than anything for my children to be happy, and I love them because they are sad, and the erratic project of kneading that sadness into joy is the engine of my life as a father, as a son, as a friend – and as a writer.”

Our children make us reach across the godlike space between us, and find what is on the Other side.

Follow us on Twitter: @globeandmail

Topics: