Solomon’s title sums up the contents of his weighty tome. Ten of the twelve chapters are devoted to a single condition each, e.g. Chapter 2, Deaf, Ch. 5, Autism, Ch. 11, Transgender. The title comes from Solomon’s assessment that children born with differing conditions than their parents are in some fundamental way “far from the [family] tree.” As this is a blog devoted to information about Down syndrome, this review focuses on Chapter 4: Down syndrome.
Solomon provides an impressive overview of the modern history of Down syndrome in the United States. He shares the shocking statement made by Joseph Fletcher, an ethicist, in 1968:
[There was] no reason to feel guilty about putting a Down’s syndrome baby away, whether it’s “put away” in the sense of hidden in a sanatorium or in a more responsible lethal sense. It is sad, yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down’s is not a person.
(emphasis added). Considering this statement was reflective of the attitudes of many at the time, it makes Solomon’s chronicling of the pioneers in the modern Down syndrome movement all the more impressive.
Solomon provides a thorough review of Emily Pearl Kingsley’s experience raising her son with Down syndrome. Kingsley is well-known in the disability community for being the author of “Welcome to Holland,” which many share to explain the disabled experience: while you may have planned a trip to Italy and be disappointed you were re-routed to Holland, there is still much to enjoy about Holland. Solomon begins his chapter with this poem as it informs the stories throughout the book, both in those that echo its message, and those who vehemently disagree with its sentiment.
Solomon also features Betsy Goodwin, the founder of the New York-based National Down Syndrome Society (NDSS). He retells how after Betsy’s daughter, Carson, was born her obstetrician said, “Why don’t you have a healthy baby, and we’ll forget about this one?” This was a decade after Mr. Fletcher’s abhorrent remark. His view, however, was simply outdated based on scientific advances. Solomon recounts how Goodwin, after founding NDSS, “met with the head of the National Institutes for Health (NIH), who told her that with amniocentesis, there would soon not be anyone born with Down syndrome.'”
Against this backdrop of systemic discrimination against their children, Solomon shares the stories of many families, but who all have a common thread running through their accounts of raising a child with Down syndrome. I’ll let their words speak for themselves:
Kingsley, about her son: “The ultimate job is to appreciate him for who he is–and who he is, is really terrific.”
Goodwin, about her daughter’s siblings: “My three kids get along great,” Betsy said. “That was another warning of the obstetrician: it’s going to ruin your marriage, and any kids you have subsequently will suffer. I really think, almost to a one, the siblings of kids with Down’s grow up to be more sensitive and thoughtful–maybe even more fulfilled–than the rest of the population.”
Deidre Featherstone on not having an amnio: “Thank God, because it would have been the biggest mistake of my life,” Deirdre said. “You can’t assess what you don’t know.” *** [in counseling others with a Down syndrome diagnosis about her experience]: “I’ll tell you what, it’s the best thing that has ever happened to me.”
Angelica Roman-Jiminez, responding to a physician’s criticism for her wanting tubes to improve the hearing of her daughter with Down syndrome, “So the doctor said, ‘Well, she’s not going to be perfect.’ I felt, how dare he say that? He’s never going to be perfect, either.”
Susan Arnsten, whose son Adam is dually diagnosed with Down syndrome and on the autism spectrum, “The day Adam was born, my life became purposeful, and it has kept purpose ever since.”
This is not to say that Solomon sugar coats the experience of raising a child with Down syndrome. Consistent with other chapters, Solomon presents the challenges of raising a child with special needs. Another common experience the parents he interviewed had was the realization, at one point or another, of what their child is more than likely not going to be able to do. Kingsley reflects on the tremendous strides she made with her son, Jason, through early intervention, but not too long into elementary school years, the delay became apparent and not able to be surmounted no matter the amount of intervention. But, this realization of some limitation does not detract from the ultimate view that raising a child with Down syndrome is overall not a negative, but a positive.
Solomon’s book is a healthy contribution to our society. It provides many people who very likely would never make the effort to get to know a family with a child with Down syndrome the chance to do so, in a way, by reading in the comfort of their own home what that life can be like. Solomon begins his book with the prompt that his book of telling these families stories is vital, now more than ever:
Broadcasting these parents’ learned happiness is vital to sustaining identities that are now vulnerable to eradication.
Therefore, his book is one that should receive the praise it has. But, as this is a book review, and it seems such things cannot be entirely positive, let me offer my one criticism: dude, get out of New York City!
No offense to the good citizens of the city so nice they named it twice, but after finishing Chapter 4, Down syndrome, I realized the interviews were all of families that were possibly within walking distance of Solomon’s residence in New York.
I also recall reading that book reviews should not criticize a work for what it’s not, but rather on the merits of what it is, so perhaps this criticism is unfair. Nonetheless, I could not help but think what else may have been added if Solomon had talked to my friends Nancy Iannone (just in neighboring New Jersey) and Missy Skavlem. Both are moms to daughters with Down syndrome who had a prenatal diagnosis and have amassed years of wisdom from counseling expectant mothers through babycenter.com’s Down syndrome pregnancy forum and now through Downsyndromepregnancy.org. Or, if Solomon had reached out to my friend Jawanda Mast, who blogs at sassysoutherngal about raising her vivacious daughter Rachel, an aspiring (and already accomplished) actor. Or, the many DADS who are active in Dads Appreciating Down Syndrome.
But, if Solomon had talked to all of these wonderful people, they still would have had the same final conclusion that he shares from the many families he interviewed: yeah, Down syndrome has its challenges, but raising their child with Down syndrome has not been a negative, but a positive for their life. Solomon would have, however, broadened the culture of the families he interviewed. This is not to say that my friends listed above are not just as goal-driven as your average New Yorker, but certainly some of the expressed melancholy at realizing the things their child very likely will never do may have been tempered by speaking with parents from a different part of the country, and from a different generation.
Because the other thing that I thought of as I read Solomon’s book was: due to the good work of our forefathers and mothers in the Down syndrome community, just as they expected their child’s life would be better than in previous generations, so, too, do families now expect that their child’s life with Down syndrome will be even that much better than the previous generation.
This is informed by my first ever meeting for Dads of children with Down syndrome through my local organization. Three of my peers showed up, each one of us having a child under one year of age. A father, whose son at that time was almost finishing high school, joined us. As much as he wanted to provided support, it took the form of talking about realizing all the things his son would not do. My friends and I were just learning how to be first-time fathers and we saw no limits for our children. We cut the evening short and adjourned to a bar across the street to lambast that father of an older child. How dare he say what our children could or could not do! As the years have passed, we have instead laughed about that evening, and, perhaps, realized some of the truth he was imparting, but we still see a bright future ahead for our sons and daughters. And, this is due in no small part to the good work those parents performed decades ago in defiance of ethicists, medical professionals, and heads of governmental agencies.
So, when Andrew Solomon lumps Down syndrome into a book of other conditions, with all being labeled “Far from the Tree,” I’m left asking, “Far from what Tree?” If anything, the fact that my daughter has some extra genetic material from her parents makes her “Closer to the Tree,” not far from it. That said, Solomon’s work is a net good for our world and it shares a message that study after study has found, but nevertheless bears repeating: no one can predict what a life with Down syndrome is going to be like, except that when you speak to families, they will tell you it is not a negative, but a positive.
Question: What would be your quotes if you had been interviewed by Mr. Solomon?