Being different is isolating, but if we join with others who are perceived as undesirable we find community and a powerful voice for social change, says Andrew Solomon, author of Far From The Tree, at a talk at the Toronto Reference Library yesterday.
"It's important to establish the commonality of difference," Solomon says, speaking of his new book that explores families of children who appear "alien" to their parents because they have conditions like Down syndrome, dwarfism, deafness and schizophrenia, or are transgender, child prodigies or conceived in rape.
"It's all one battle," Solomon says. "If you take every [person] who experiences themselves as somehow different from the mainstream, that's more people than in the mainstream. All of us should be addressing the questions and advocating together for a more just world."
Solomon is referring to the way minority groups have historically split off from each other in their advocacy efforts. People with physical disabilities don't want to be identified with those with intellectual disabilities, or people with mental illness object to being compared to those with autism, or someone who's transgender doesn't see any common experience with a person with dwarfism. As he notes in his book, the parents of child prodigies didn't want to be included in a book with families of severely-disabled children, people with autism insisted that those with Down syndrome had lower intelligence than them, and deaf people didn't want to be associated with people with schizophrenia.
I think Solomon has nailed the problem of discrimination within the disability community -- and how it fractures all of our attempts to achieve equality as humans.
"Being blind and being gay are different, but having a selfhood that others perceive as undesirable is identical," Solomon writes in Far From The Tree.
Solomon admits that before writing the book he was "somewhat afraid or uncomfortable" with the groups of people he'd be interviewing. "Then I got to know people and hear the stories of people and I felt a glowing humanity...The experience of habit makes these syndromes different from how one imagines them from the outside."
Solomon first became interested in writing about parents whose children appear to be unlovable when he wrote Defiantly Deaf for the New York Times Magazine. In researching the piece, he realized that his experience growing up gay with straight parents had parallels to what it felt like to be a deaf youth living with hearing parents. "I saw people who were deaf didn't experience it as 'lacking hearing' but as having membership in a good and valid culture" centred around sign language, Solomon said. "I became interested in the tension between the ideas of illness and identity.
Solomon contrasts how being gay in the 1970s was perceived as an illness and criminal act while his life today as a husband with children is seen as an identity. "I thought if people can make that switch from illness to identity, then where else is [that change] possible?"
Solomon's book focuses on what he calls horizontal identities -- "when a child is a member of a culture with which the parents have no previous experience and needs to learn identity from a new peer group." In contrast, vertical identities are traits that are passed down generationally, like race and language.
Horizontal identities are central to a person, Solomon says. "They are inherent to someone's whole personality and you can't cordon them off," as some parents attempt to do -- refusing to allow a deaf person to sign, for example, trying to turn a gay child straight, or insisting that a child with dwarfism have their arm and leg bones broken in a dozen places, and stretched in a painful, even "barbaric" he says, procedure.
"When parents say 'I wish my child didn't 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," is how a man with autism describes it to Solomon. "...This is what we hear when you pray for a cure...that one day we will cease to be, and strangers you can love will move in behind our faces."
Solomon notes that at a time when life for people with Down syndrome is better than it's ever been -- "they live longer, have more intellectual accomplishments, function better and have greater education opportunities" they are at risk of being eradicated through prenatal testing and termination. He doesn't argue against prenatal testing but believes "a lot of the decisions are made from a standpoint of ignorance." He admits that his decisions on such matters would have been different before his indepth exposure to people with disabilities.
He stresses that cultural perceptions about what's a disability and what's an identity are fluid. "These things change. What seems today to be a disability 10 years from now might not be seen as a disability."
Social progress in how we view difference is as important as medical progress, he says. With the advent of "designer children" he hopes that "social mores will also progress, so that when we're given more choice, we won't all make the same choice." He calls for an "opening or expanding of our idea of normality."
Solomon says institutional and home care should be options for families and we have to recognize that while some families are suited to heavy caregiving, others are "barely holding on."
Typically the interests of non-disabled siblings are put first in decisions about where the disabled child lives. For many years, he says, it was standard practice to send disabled children to a home "in order to ensure siblings didn't have attention taken away from them." Now standard practice is that it's better for siblings to keep the disabled child at home so they don't later in life blame themselves for being the cause of the child's abandonment. But in either case "the focus is on the siblings and their mental health" Solomon says, rather than on the child with disability.
Parents with a lot of privilege in life tend to be perfectionistic and it was in these families where he saw the strongest attempts to "fix" the child, he says. In contrast, in families that didn't have the means to invest in intensive rehab programs, parents were more accepting of the child's differences.
He notes that while the siblings he met sometimes experienced their brother's or sister's care as draining, or felt parents were preoccupied with it, they loved their sibling deeply and did not wish that the child didn't exist. He came to the conclusion that the disability experience made siblings "more humane and kinder."
He encourages people to describe those with differences in a way that respects, rather than denigrates, while noting that we often become ludicrously rigid about language and intention is most important.
Solomon says that human diversity is what makes the world rich and is as important as diversity in animals or flora.
"Even when everything went wrong, people find meaning in the experience of being parents," he says. "This is not a Hallmark card and I'm not suggesting we go around saying 'What a shame that child isn't disabled.' But, as in looking at depression, it's possible to look deep into difficulty to find meaning and it's possible to grow. These are challenging and shocking experiences that call on people to undergo a profound transformation."
Andrew Solomon won a national book award for The Noonday Demon, An Atlas of Depression in 2001.