I was looking forward to Andrew Solomon’s Far From the Tree with a mixture of eagerness and trepidation after reading Cristina Nehring’s article, Loving a Child on the Fringe, and Alison Piepmeier’s initial reaction to the book on her blog, Baxter Sez: “My Early Thoughts on Far From the Tree.”  The book is generating quite a lot of buzz in the Down syndrome parenting community, and at 702 pages (not counting bibliography, notes, acknowledgments, and index, which comprise another couple hundred pages), it’s quite a tome.

To date, I’ve read the first four chapters, and I’ve been trying to sort through my thoughts and feelings.  I wanted to get some of my thoughts down specifically on Solomon’s chapter on Down syndrome while it’s still fresh in my mind.

The first chapter introduces us to the concept of “horizontal identity” – that is, the fact that some of us in the human family have something that is so fundamentally different about us that we must seek out peer groups who share the same fundamental differences outside of our families (from whom we receive our “vertical identity”) for a sense of belonging.  The second chapter is on deafness; the third is on dwarfism, and the fourth is on Down syndrome – all examples of “horizontal identity.”

I have mixed feelings about his presentation of Down syndrome.  Solomon is a gifted writer, and this book was obviously an extremely time-intensive labor, as it’s comprised of extensive research and interviews that span years and years.  I think it’s important to keep in mind, however, that this book is not intended to be a piece of advocacy for the specific “horizontal identities” which are discussed.  I think as a whole, Solomon’s book is meant as a sociological study, and to that end, it’s fascinating – an exploration of the human condition through a lens of fundamental differences, and I guess as far as advocacy goes, it’s perhaps meant to advocate for diversity in general.  As for each topic the author writes about, I’m not sure how or why he hand-picked the specific topics he did.  In any case, I’m pretty certain that he didn’t choose them because he has a soft spot for all or even any of them.

As a parent of a child with Down syndrome, it’s always a little awkward and uncomfortable  for me to hear or read an “outsider’s” take on what it means to have Down syndrome, or what it means to love someone who has Down syndrome.  A person can study Down syndrome in books, they can interview people who have Down syndrome and their families, they can enter a career that will bring them face to face with Down syndrome five days a week, but unless you live Down syndrome – and by that, I mean either have it yourself or experience the highs and lows, day in and day out by having an intimate relationship with someone with Down syndrome – you don’t really know Down syndrome.  So as a parent, I always hope the “outsiders” will get it right, but they inevitably, even with the best of intentions, get it at least partly wrong, and their perceptions are colored by their own biases.

And I have no doubt that the same can be said of all the other horizontal identities out there as well.

There were a few things that struck me as I read Solomon’s chapter on Down syndrome.  First of all, it has a generally grim tone.  While he does touch on the joy and fulfillment most families with a child with Down syndrome experience, overall, he seems more intent on discussing the down side of having a child with Down syndrome – or of having Down syndrome: the medical issues, the loneliness, the battles with school districts, the agony of parents trying to figure out what to do with their adult children with Down syndrome.  And while these are certainly all very real issues, they are no more real or important than the joy and fulfillment the vast majority of families in the Down syndrome community experience.  I guess what I’m saying is, if Solomon intends with this book to promote the idea that diversity enriches humanity, a more balanced picture would be called for.

I got the feeling that Solomon actually didn’t delve into the Down syndrome community nearly as deeply as he did the deaf community or the dwarf community.  He immersed himself in Deaf culture – to the extent possible as a hearing person – and even traveled to a remote third-world community where deafness is prevalent in order to explore deafness outside of America.  He became intimately familiar with dwarfs and families of dwarfs and attended numerous dwarf conventions.  His exploration of Down syndrome, on the other hand, appears to be based solely on academic research and extensive interviews.  He mentions Buddy Walks, but there is no indication that he actually attended a Buddy Walk, or a Down syndrome convention, which are held annually and have been for years.  He doesn’t make any mention of the online Down syndrome community through blogs and forums, which are booming and absolutely integral parts of the Down syndrome community as a whole.

Further, all of the families he interviewed seem to reside in New York, and they all have adult children with Down syndrome.  I believe this is important because the face of Down syndrome changes with each generation, or even half-generation; the lives of children born today with Down syndrome look very different from those of children born with Down syndrome even ten years ago – certainly twenty years ago.  I watch Finn with his iPad and am in complete awe at how technology is enabling him to teach himself so much through interactive play, and it nearly blows my mind to think how different it was even five years ago when there was no such thing as an iPad.

Solomon is off in his word usage, as well.  The chapter is peppered with “Downs kids” and “Down’s.”  “Down’s” is not considered appropriate here in the US (although it is in Europe), and “Downs kids” is frowned upon here.  From a completely objective standpoint, the fact that Solomon completely missed the People First Language movement – which is a huge hot button issue in the Down syndrome community – is a red flag.  Additionally, he uses the term “mentally retarded” pretty liberally.  It honestly didn’t offend me; I can handle it when it’s used in the clinical sense (it’s only been done away with in the clinical sense because it became a casual and ubiquitous pejorative; had it retained only its clinical meaning, it never would have come to be seen as offensive, and I still maintain that regardless of what we demand the terminology be changed to, it will eventually be flung around as an insult – attitudes have to change before language can really be changed), but the fact that he seems unaware that “mentally retarded” just isn’t used any longer indicates that he hasn’t done his homework as thoroughly as perhaps he should have.  It’s also indicative, I think, of the fact that he only seems to have spent time with families of adult children with Down syndrome; some of the insights he gained from them are simply outdated.

The chapter does discuss the issue of prenatal testing for Down syndrome and the implications of it, and he does a good job with this discussion.  Prenatal testing, especially in light of the new, “better” tests available to expectant mothers now, is another hot button topic in the Down syndrome community.  He remains neutral, discussing the perceived benefits of testing and the impact on society by likely reducing the number of babies born with Down syndrome, and therefore also reducing funding for research and services for people already living with Down syndrome.

In his chapters on deafness and dwarfism, Solomon discusses the fine line that exists between affirming and helping those with the conditions, and trying to improve or change them – as with cochlear implants for the deaf, and limb-lengthening surgery on those with dwarfism.  Both of those procedures have ignited passionate debate in their respective communities, with some parents being adamantly in favor of doing whatever it takes to give their children every tool available to help them fit into a society that is not naturally equipped to accommodate them, and some parents righteously indignant at the suggestion that their children should be “normalized” to fit an arbitrary convention.  These are extremely important issues, and I wish Solomon had carried this idea into his exploration of Down syndrome; indeed, I wish it were more a topic of discussion in the Down syndrome community.  Solomon discusses Early Intervention for children with Down syndrome, but only in terms of obviously that’s what parents do for their poor Downs kids nowadays, and boy, are they lucky to have it – not like in the old days.  No discussion of the implications of Early Intervention – how it’s possibly the equivalent of the cochlear implant or limb-lengthening: an effort to normalize children with Down syndrome to the extent possible rather than accepting and embracing them as they are (do I have you riled yet?  Don’t you think this is worthy of discussion at least?  I do.).

The chapter left me feeling a little sad.  I lay awake in the quiet darkness of my bedroom on more than one night after reading it pondering . . . pondering Down syndrome, our family, Finn, Finn’s future, worrying over all the things that parents who have a child with Down syndrome worry about.  Solomon’s presentation of Down syndrome dug up feelings I thought I had put to rest a long time ago, and that’s unsettling.

Nevertheless, I’ve never believed that it’s honest to insist on focusing only on the positive, and doing so does a disservice, I think, to those affected by Down syndrome.  I certainly don’t see Finn’s life as bleak or grim, nor do I see our life with him in it as bleak or grim.  It’s mostly just life – full of ups and down, and yes, with a unique set of challenges where Finn is concerned.  It is worth it?  An unqualified yes.

I’ve set aside Far From the Tree for the time being, as I’m reading my book club’s current selection, but I plan to get back to it in the next couple of weeks.