My study is of families who accept their children, and how that relates to those children’s self-acceptance…. In turn, it looks at how the acceptance of larger society affects both these children and their families.
In this ambitious work, writer Andrew Solomon examines “horizontal identities,” i.e., identities that a person finds with some group outside one’s family (vertical identity). For the purposes of this study, those identities are with marginalized groups whom society might like to cure, correct or otherwise eliminate. Over many years and through interviews with hundreds of families, researchers and other professionals, Solomon identified several marginalized identity groups and raises provocative questions as to whether they should be recognized, accepted, and valued for who they are as opposed to working toward their correction or extinction.
Each chapter deals with one identity group, and the titles are deaf, dwarfs, Down syndrome, autism, schizophrenia, disability, prodigies, rape, crime, and transgender. The book begins and ends with chapters on Solomon himself, as a son struggling with dyslexia and homosexuality, and as a father in a non-traditional family. Solomon provides an impressive, well researched, balanced and compassionate exposition on each topic. He does his background research into the science of his topics and lays it out clearly for the reader, but this is no dry psychology text. What illuminates Solomon’s research are the real people whom Solomon interviewed over the course of many years, watching family dynamics unfold and the real relationships of parents with their “different” children progress.
For each identity group, there is contention within and from without as to whether the difference should be eliminated or accepted and accommodated. Is it an appropriate goal to make everyone the same? The Deaf, for example, have their own culture and, as Solomon points out, it is stronger now than ever, but due to technological advances such as cochlear implants, that culture is threatened as hearing parents decide to provide implants instead of embracing their children’s deafness. Does it make sense to try to stop this from happening? Due to prenatal testing, parents can select out Down syndrome and many choose to abort a fetus at risk for Down syndrome. Is this desirable, or would it be better to welcome the difference and create a better environment for the success of those with Down syndrome? Conversely, if parents are able to select out “defects” in their children, would it not be understandable that deaf parents or parents who are dwarfs would want their children to be like them? Society cringes at the notion of purposely choosing deafness or dwarfism for children as if it were cruel and sick, but what makes us think that the lives of these people are of lesser value than any other life?
Much of this book revolves around the families telling their stories, and that is what makes it so very compelling to read. Even though they are dealing with problems that they didn’t foresee and that they cannot eliminate, most present positive attitudes and resilience. Many become advocates for their identity group. Solomon does provide examples of families for whom the problems are too much, who are struggling and don’t necessarily see the life before them as a “trip to Holland” (a reference to a famous essay by Emily Perl Kingsley regarding the birth of her son who has Down syndrome). But he does so with compassion and little in the way of judgement. The two chapters that I was most interested it were “crime” (because I had read that he interviewed Dylan Klebold’s parents) and “schizophrenia” (because I know little about it and it seems so scary). I received an education on schizophrenia. While it is a horrible burden for those who have it and for their families, there are a lot of misconceptions about it in society at large. We should have compassion instead of fear for those who have it. The chapter on crime and the interview with the Klebolds (only a few pages in a very long chapter) reveals how kind they are and how devastated they were by their son’s actions at Columbine. There was more to that story than most people know, and I feel bad for ever blaming parents like the Klebolds for the crimes of their children.
As the parent of two children with autism spectrum disorders, I must comment on the autism chapter. We in the autism community are a divided and contentious bunch, but for the most part, I think Solomon managed to present the issues we face and our differences accurately. He starts this chapter with a heartbreaking story of a family he has known for many years now. The daughter, at the age of ten, was institutionalized because she was becoming dangerous to her family and her parents were at a loss as to how to help her, given the severity of her behaviors. Throughout the chapter, Solomon presents several stories of families struggling to help their children who are not independent and display troubling behaviors, and he recognizes how difficult the struggles are for the child and the family, especially when there is little to nothing in the way of community supports for those families. Towards the end of the chapter, Solomon highlights the tragedy of parents murdering their autistic children and essentially getting away with it. I was stunned at the evidence he provided regarding the number of murders that have happened and the lenient sentences that parents received. The life of a child with autism is somehow less of a life to the judges who sentence. It seems “understandable” that a parent would get frustrated and kill the child, and that is sickening.
My one criticism of this chapter is about this statement of Solomon’s: “The increased rate of diagnosis is crucial to the claim that there is an epidemic — critical in lobbying for resources for research. But the higher functioning people whose inclusion has brought up the numbers are often the ones who advocate against some of that research.” That second sentence needs some evidence to back it up. I am unaware of any research that shows the higher rates of autism being related more to “higher functioning” people getting diagnosed. “Higher” versus “lower” functioning is a minefield in and of itself and is not an official part of any diagnostic criteria for autism.
Having made that criticism, I should note that others will have many more complaints about this chapter. Those in the autism community who are sure that vaccines cause autism and who are anti-Neurodiversity will hate it. Solomon wrote about Neurodiversity for New York magazine several years ago and is sympathetic to the movement. Many adults with autism have a chance to speak up for themselves in this chapter and many do so with intelligence and conviction. They like who they are and do not want to be “cured.” They want to be accepted and valued as equal members of the community, which I think parents of children with autism the world over wish for as well.The ND alienate some in the autism community, however, by taking an “anti-cure” stance (which seems to stand against scientific advancement) and criticizing interventions such as Applied Behavioral Analysis, which is the go-to intervention for autism and is only now being recognized by insurance companies as a coverable expense. Parents are made to feel that the interventions they choose are self serving for the parent and harmful to their children. Solomon quotes a parent who says,
The fact that my children have an abnormality of development does not meant that I do not love my children for who they are. As with any other condition that would threaten their future and happiness, I do as much as I can to help them be functional and as normal as possible. And no, “normal” to me does not mean “a cookie-cutter robot-child trained to do my will.” It means: “able, like most people without autism, to lead an independent, purpose-filled life — able to speak, able to communicate, able to form and keep relationships.
Far From the Tree is an ambitious, unique piece of research and reflection on identity. It should be required reading for policy makers and would be a great choice for a community book read. Each chapter could provide hours of discussion.