Far From the Tree

by Solomon, Andrew

  Those men and women who believe that parenting a disabled child has given them knowledge or hope they wouldn’t otherwise have had find worth in their lives, and those parents who don’t see such possibilities often can’t. Those who believe their suffering has been valuable love more readily than those who see no meaning in their pain. Suffering does not necessarily imply love, but love implies suffering, and what changes with these children and their extraordinary situations is the shape of suffering—and in consequence, the shape of love, forced into a more difficult form. It doesn’t really matter whether the meaning is there; it matters only whether it is perceived. Delusions of physical health may be delusions; someone who has congestive heart failure will probably die from it whether he believes that he has it or not. 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. In one study, mothers who construed advantages from having premature babies experienced less psychological pain and were more responsive to their children’s needs, while those who saw no advantages in the experience had children who were doing less well at age two. A study that looked at children with various complications at birth found, simply, “The children of mothers who had tried harder to find meaning had a better developmental outcome.”

  The world is made more interesting by having every sort of person in it. 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. Some think that without suffering the world would be boring; some, that without their own suffering the world would be boring. Life is enriched by difficulty; love is made more acute when it requires exertion. I used to think that the nature of the challenge was extremely important. In my last book, I wrote about how at some level I loved my depression because it had tested my mettle and made me into who I am. I now think I could have had the same enrichment from having a child with Down syndrome, or having cancer. It is not suffering that is precious, but the concentric pearlescence with which we contain it. The raw grit of anguish will never be in short supply. There is enough of it in the happiest life to serve these instructive purposes and there always will be. We are more sympathetic to Holocaust survivors than to malcontent children of privilege, but we all have our darkness, and the trick is making something exalted of it.

  We say that our struggles have ennobled us, but we don’t know who we would have been without them. We might have been equally wonderful; our best qualities might be inherent rather than circumstantial. Nonetheless, most people look back even on unhappiness with nostalgia. I once accompanied a Russian artist to visit his elderly mother in Moscow. When we arrived at her apartment, we found her watching a Soviet propaganda movie from the 1940s on TV. I said to her, “Nadezhda Konstantinova, you were sent to the Gulag in that exact time, on the basis of that exact philosophy. And now you sit around watching that for entertainment?” She smiled and shrugged her shoulders. “But it was my youth,” she said.

  • • •

  The question I was most frequently asked about this project was which of these conditions was the worst. From my own perspective, some conditions seem tolerable; some, desirable; others, terribly difficult. Bias varies, and other people revel in ways of being that I find frightening. I understand, therefore, why my own way of being frightens some people. Difference and disability seem to invite people to step back and judge. Parents judge what lives are worth living, and worth their living with; activists judge them for doing so; legal scholars judge who should make such judgments; doctors judge which lives to save; politicians judge how much accommodation people with special needs deserve; insurance companies judge how much lives are worth. Negative judgments are not confined to people who perceive themselves to be in the mainstream. Almost everyone I interviewed was to some degree put off by the chapters in this book other than his or her own. Deaf people didn’t want to be compared to people with schizophrenia; some parents of schizophrenics were creeped out by dwarfs; criminals couldn’t abide the idea that they had anything in common with transgender people. The prodigies and their families objected to being in a book with the severely disabled, and some children of rape felt that their emotional struggle was trivialized when they were compared to gay activists. People with autism often pointed out that Down syndrome entailed a categorically lower intelligence than theirs.

  The compulsion to build such hierarchies persists even among these people, all of whom have been harmed by them. Halfway through my writing of this, a mother who had spoken to me freely about her transgender teenager’s autism agreed that I could refer to him as male; she had originally asked me to avoid the issue of his gender because the prejudice against trans people and potential for hostile scrutiny terrified her. As I got to the end of the writing, a woman I’d known well as the mother of a transman admitted that her son was on the autism spectrum; she had not mentioned this previously because she thought the stigma was too significant. There is no consensus on what can be talked about and what needs to be hidden. Tobin Siebers makes a moving case for horizontal solidarity by pointing out that our disdain for people who cannot care for themselves is rooted in a false proposition. He argues that inclusion of disabled people “exposes the widespread dependence of people and nations on one another, dispelling the dangerous myth that individuals or nations exist naturally in a state of autonomy and that those individuals or nations that fall into dependence are somehow inferior to others.”

  The beautiful mosaic of multiculturalism was a needed antidote to the melting pot of assimilationism. Now it’s time for the little principalities to find their collective strength. Intersectionality is the theory that various kinds of oppression feed one another—that you cannot, for example, eliminate sexism without addressing racism. Benjamin Jealous, president of the NAACP, the nation’s oldest civil rights organization, told me how galling it was to him, growing up in a white town, when he and his adoptive brother were taunted for being black—and how much more distressing it was when some of the people who didn’t patronize them for their race went after his brother for being gay. “If we tolerate prejudice toward any group, we tolerate it toward all groups,” he said. “I couldn’t have relationships that were conditional on excluding my brother—or anyone else. We are all in one fight, and our freedom is all the same freedom.”

  In 2011, gay marriage became legal in New York State after several Republicans in the state Senate agreed to support it. One of them, Roy J. McDonald, said that he had changed his stance on gay marriage because he had two autistic grandchildren, which had caused him “to rethink several issues.” Jared Spurbeck, an autistic adult, thought his own quirks were “a sign of sinfulness” when he was growing up in the Mormon faith; when he started reading about gay Mormons, he found their experience much the same as his. “I couldn’t ignore the parallels between autism and homosexuality. Once I’d accepted the one, I couldn’t not accept the other.”

  I encountered activists of every stripe while I did this research and admired them even when I occasionally found their rhetoric expedient. The changes they sought seemed, individually, restricted to their particular province and experience, but as a group, they represent a rethinking of humanity. Most parents who become activists do so because they want to spur social change, but that impulse is never unalloyed. Some find it a relief because it gets them out of the house and away from their child without their having to feel guilty about it. Some use activism to distract themselves from grief; parents often laud what they rue most about their children to defend against despair. But just as belief can result in action, action can result in belief. You can gradually fall in love with your child, and by extension with that child’s disabilities, and by further extension with all the world’s brave disadvantages. Many of the activists I met were determined to help other people because they couldn’t help themselves. Activism successfully displaced their pain. By teaching
their learned optimism or strength to parents reeling from a recent diagnosis, they fortified it in their own families.

  I understand this strategy firsthand, because writing this book addressed a sadness within me and—somewhat to my surprise—has largely cured it. The best way to get through these horizontalities is to find coherence, and in the wake of these stories, I recast my own narrative. I have a horizontal experience of being gay and a vertical one of the family that produced me, and the fact that they are not fully integrated no longer seems to undermine either. Some impulse toward anger at my parents evaporated, leaving only trace residue. In absorbing stories of strangers’ clemency, I realized that I had demanded that my parents accept me but had resisted accepting them. Once I did, I was glad to have their ubiquitous company. The playwright Doug Wright once said that family inflicts the deepest wounds, then salves them the most tenderly. When I realized there was no refuge from my parents’ meddling, I learned to value it over loneliness and call it love. I started my research aggrieved; I ended it forbearing. I set off to understand myself and ended up understanding my parents. Unhappiness is a constant grudging, and in these pages, happiness served as a spur to amnesty. Their love always forgave me; mine came to forgive them, too.

  I know that who I was appalled my mother and concerned my father, and I used to be furious at them for not embracing this horizontal part of me, for not embracing the early evidence of it. Writing has been a lesson in absolution, because I have seen the valiance love takes. Acceptance was always easier for my father than it was for my mother, but that was not particular to me; he accepts himself more readily than she did herself. In her own mind, she always fell short; in my father’s own mind, he is victorious. The interior daring of becoming myself was my mother’s gift to me, while the outer audacity to express that self came from my father.

  I wish I’d been accepted sooner and better. When I was younger, not being accepted made me enraged, but now, I am not inclined to dismantle my history. If you banish the dragons, you banish the heroes—and we become attached to the heroic strain in our personal history. We choose our own lives. It is not simply that we decide on the behaviors that construct our experience; when given our druthers, we elect to be ourselves. Most of us would like to be more successful or more beautiful or wealthier, and most people endure episodes of low self-esteem or even self-hatred. We despair a hundred times a day. But we retain the startling evolutionary imperative of affection for the fact of ourselves, and with that splinter of grandiosity we redeem our flaws. These parents have, by and large, chosen to love their children, and many of them have chosen to value their own lives, even though they carry what much of the world considers an intolerable burden. Children with horizontal identities alter your self painfully; they also illuminate it. They are receptacles for rage and joy—even for salvation. When we love them, we achieve above all else the rapture of privileging what exists over what we have merely imagined.

  A follower of the Dalai Lama who had been imprisoned by the Chinese for decades was asked if he had ever been afraid in jail, and he said his fear was that he would lose compassion for his captors. Parents often think that they’ve captured something small and vulnerable, but the parents I’ve profiled have been captured, locked up with their children’s madness or genius or deformity, and the quest is never to lose compassion. A Buddhist scholar once explained to me that most Westerners mistakenly think that nirvana is what you arrive at when your suffering is over and only an eternity of happiness stretches ahead. But such bliss would always be shadowed by the sorrow of the past and would therefore be imperfect. 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.

  For some parents of children with horizontal identities, acceptance reaches its apogee when parents conclude that while they supposed that they were pinioned by a great and catastrophic loss of hope, they were in fact falling in love with someone they didn’t yet know enough to want. As such parents look back, they see how every stage of loving their child has enriched them in ways they never would have conceived, ways that are incalculably precious. Rumi said that the light enters you at the bandaged place. 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.

  II

  Deaf

  On Friday, April 22, 1994, I received a phone call from a man I had never met who had read my writing on identity politics for the New York Times and had heard I was planning to write on the Deaf. “There’s a situation brewing at Lexington,” he said. “If it’s not resolved, we’re going to see something happening in front of the center on Monday.” I got some further details. “Listen, this is a serious situation.” He paused. “You never heard from me. And I’ve never heard of you.” And he hung up.

  The Lexington Center for the Deaf in Queens—New York City’s foremost institution of Deaf culture, which incorporates the largest school for the deaf in New York State, with 350 students from preschool through high school—had just announced a new CEO, and students and alumni were unhappy with the choice. The center board members had worked with a search team that included representatives of every part of the Lexington community—many of them deaf—to select a candidate. A hearing board member who had just lost his position at Citibank, R. Max Gould, threw in his own name and was elected by a narrow margin. Many deaf constituents felt that their lives were once more being controlled by hearing people. A core committee of local Deaf activists, Lexington student leaders, faculty representatives, and alumni organized within minutes, requested a meeting with the chairman of the board to demand Gould’s resignation, and were summarily brushed off.

  When I arrived at Lexington on Monday, crowds of students were marching outside the school. Some wore sandwich boards that read THE BOARD CAN HEAR BUT THEY ARE DEAF TO US; others wore DEAF PRIDE T-shirts. MAX RESIGN placards could be seen everywhere. Groups of students climbed up onto the low wall in front of Lexington so their rallying cheers would be visible to the crowd below; others chanted back silently, many hands moving together in repeating words. I asked the sixteen-year-old, African-American student-body president whether she had also demonstrated for race rights. “I’m too busy being Deaf right now,” she signed. “My brothers aren’t deaf, so they’re taking care of being black.” A deaf woman standing nearby threw in another question: “If you could change being deaf or being black, which would you do?” The student was suddenly shy. “Both are hard,” she signed back. Another student interceded. “I am black and Deaf and proud, and I don’t want to be white or hearing or different in any way from who I am.” Her signs were big and clear. The first student repeated the sign proud—her thumb rose up her chest—and then suddenly they were overcome with giggles and returned to the picket line.

  Protesters had commandeered a room inside to discuss strategy. Someone asked Ray Kenney, director of the Empire State Association of the Deaf, whether he had any experience leading a protest. He shrugged and signed back, “It’s the blind leading the deaf around here.” Some faculty members took sick days to join the demonstration. Lexington’s director of public affairs told me that the students just wanted an excuse to miss classes, but that was not my impression. The faculty representatives to the core committee were vigilant. “Do you think the protest will work?” I asked one teacher. Her signing was methodical and emphatic. “The pressure has been building—maybe since the school was founded in 1864. Now it’s exploding. Nothing can stop it.”

  Schools play an unusually important part in the lives of deaf children. More than 90 percent of deaf children have two hearing parents. They enter families that do not understand their situation and are often ill-prepared to contend with it. In schools, they are first exposed to Deaf ways. For many, school is the end of terrible loneliness. “I didn’t know that there were other peop
le like me until I got here,” one deaf girl said to me at Lexington. “I thought everyone in the world would rather talk to someone else, someone hearing.” Every state but three has at least one center or residential school for the education of the deaf. A Deaf person’s school is a primary mode of self-identification; Lexington and Gallaudet were among the first signs I learned.

  When capitalized, Deaf refers to a culture, as distinct from deaf, which is a pathological term; this distinction echoes that between gay and homosexual. An increasing number of deaf people maintain they would not choose to be hearing. To them, cure—deafness as pathology—is anathema; accommodation—deafness as disability—is more palatable; and celebration—Deafness as culture—trumps all.