On Down Syndrome and Falling Far From the Tree

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.

556318_4550977045548_1299661173_nNevertheless, 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.




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12 Comments on “On Down Syndrome and Falling Far From the Tree”

  1. Holly F.
    December 27, 2012 at 8:21 pm #

    First, well done! You gave me a very good picture of the chapter on Down syndrome. And you sure know how to string complex ideas (and sentences) together. 🙂

    Now if I can just remember what else I wanted to say…lol. I will have to refer back to your post several times. It might not be in order. (Also, I’m not nearly as eloquent in writing as you are. Somedays, I’m better than others. Today, my brain feels burnt out so excuse my struggle getting ideas out.)

    Also, I hope my html works. I apologize if it doesn’t.

    You mentioned it and I certainly agree. There is a huge CULTURE of deafness…that even those outside of the culture know about!! And I would bet, though to a lesser degree, there is a Culture of Dwarfism. But a culture of Down syndrome?? Maybe only to us parents….definitely not known to the general public…maybe not even siblings, cousins, and/or friends. Truthfully (at least to me), the Ds Culture seems to exist only among the parents of children with Down syndrome. While the parents of adults with Ds that I personally know are still great advocates and involved on a general level, they don’t seem to live and breathe a culture like we parents of young ‘uns do. For example, I’ve made Ds wreaths, own Ds inspired clothing, follow Ds blogs, have a Ds magnet for my car, a Ds license plate, on and on. The Buddy Walk is a party for me that I look forward to for at least a month…I want our local one to turn into a festival of music…lol. It really is a culture for me and my son is the center of it.

    Just a random thought about Solomon’s use of Diagnosis First Language and mentally retarded: You said this book spanned years; I wonder if he maybe wrote the chapter on Ds years ago and didn’t bother editing it to update terminology.

    As a southerner, I find interviewing ONLY New Yorkers horrible for a whole other reason….lol. Anytime you are sampling a population, it needs to be extremely representative of the whole. Not only did he miss the sampling mark by interviewing only parents of adults, he missed the mark again by interviewing only New Yorkers/Northerners. Come on. I don’t want to be ugly about my own kind, but we are vastly different down here…what with the Bible belt, the uneducated ignorance that is rampant, the extreme poverty…..VARIABLES Solomon, VARIABLES.

    Affirming and helping versus changing: I too think it is a very important topic to discuss.

    Thanks Lisa, for reading this and giving us such a thorough, clear, and enjoyable synopsis.

    • Lisa
      December 27, 2012 at 10:21 pm #

      Thanks, Holly!

      I agree completely with you that any “culture” or community for Down syndrome exists solely for and by the parents. I suspect that this has a lot to do with intellectual disability as a whole; to be blunt, it’s probably safe to say that it would be difficult for people with intellectual disabilities to form and maintain a cohesive “community.”

      I do think that while Solomon’s interviews spanned many years in some cases, he did update this chapter but just missed the boat on the language thing. That’s my impression.

  2. Alison Piepmeier
    December 27, 2012 at 9:18 pm #

    Thanks for your thoughtful reading of the book. I agree with you about the fact that he at least gives lip service to Deaf culture and a culture that embraces little people, more than he does for neurodiversity. And I’m intrigued by your comment about early intervention! I’ve thought that same thing. Write more!

    • Lisa
      December 27, 2012 at 10:17 pm #

      Thanks for the comment, Alison! I wrote this a long time ago about my feelings about EI: https://lisamorguess.wordpress.com/2011/01/26/babies-and-early-intervention/ … and they still hold true. I think EI largely undermines acceptance of children with Ds for who they are, it’s an industry that feeds on parents’ fears and aspirations, and it sets up a mindset of “normal/conformity = good, different – bad.” It’s also disruptive and intrusive to family life and actually emphasizes differences. I’m not a fan.

  3. Darla
    December 27, 2012 at 9:19 pm #

    I’m disappointed for you. I know that it would be nice if someone acually got it right. I can also think of more reasons the tests are not great.

  4. beth
    December 27, 2012 at 11:31 pm #

    I have been anxiously awaiting your thoughts on this book. I was excited when I saw the title of this blog post, and then not so excited after I read it. You did a great job writing this, but I don’t feel the need to read the book now as much.

    Also, I am so with you about EI. “Disability is Natural” This is not to say you sit on your hands and expect nothing. This means you expect everything and give your child access to everything and the sky is the limit…but you accept from the beginning that there will be deficits. You don’t live in denial about that or kid yourself into thinking that you can therapize your child into normalcy. Normal is way overrated, anyway.

    I digress!

    • Lisa
      December 27, 2012 at 11:52 pm #

      Preach it, sister!

  5. whitbreadk
    December 28, 2012 at 5:22 pm #

    I am also in the middle of reading Far from the Tree. I heard Solomon interviewed on NPR and couldn’t wait to read it but I’m finding the tone of the book to be different from what I expected. I have to fess up and say that I haven’t read the chapters in order. I have been skipping around and so far have read: Deaf, Dwarfs, Down Syndrome, Transgender and Crime. ( I chose those chapters because I am close to people who fit in these groups.) No pun intended—but I’m finding the book to be kind of a downer. Much of what I’ve read seems disproportionately negative. Even the Table of Contents—with its stark chapter titles (Autism, Down syndrome, Schizophrenia, Rape, Crime etc.) was disconcerting to me. Although the title of the book is catchy, it seems to read more like “how could anyone love these kids?”

    I was also disappointed that the chapter on Down syndrome focused only on adults because you don’t get that sense of how different the world is now for people with Down syndrome. I felt the author didn’t spend enough time researching this chapter. I found some of the information to be misleading or just plain wrong. For example, in writing about education, Solomon says that the Individuals with Disabilities Education Act (IDEA) of 1990 is “the most recent piece of legislation in this area” and that its requirement to educate children in the least restrictive environment “changed the appearance of the American classroom.” IDEA was actually enacted in 1975 as the Education of All Handicapped Children Act. It has been amended (most recently in 1997) but it is the same law. And the original version in 1975 contained the same requirement it does today—to educate children with disabilities in the least restrictive environment. He also says that an “essential question in the debate” about inclusion is whether having a child with a disability in the classroom is best for “typical children.” But then he fails to include the fact that virtually every single study of this issue –conducted over decades—has shown that having a child with a disability in the classroom does not negatively affect the learning of nondisabled children. In fact, it has actually been shown to have positive social effects.

    Many of the quotes he chose to include give a less hopeful view of people with Down syndrome than I have found in my 30 years of working with this population and their families. For example, suggesting that people with Down syndrome plateau in their social development or that “high functioning” people with Down syndrome notice they are different more than “lower functioning” people with Down syndrome just doesn’t jive with my experience. I found the dated language along with the descriptions of adults according to perceived developmental age (“he is like a five year old”) to be demeaning. After reading the chapter on Down syndrome, I moved the book off its place of honor on my nightstand. I’m sure I’ll go back and read the rest of it, but I’m not in such a hurry anymore.

  6. Lisa Gleeson
    December 28, 2012 at 10:56 pm #

    I just finished reading the entire book last week, and I am glad I did. However, although I do not have a family member with Down Syndrome or one with severe multiple disabilities (I believe that chapter comes later in the book), I do teach students with both. Presently I teach pre- schoolers with multiple disabilities. I felt that both of these chapters were pretty grim and I didn’t feel as though Solomon put forth the effort to learn about children with intellectual disabilities or severe disabilities the way he did with the other families in this book. Maybe this in just not a set of peoples he is familiar with or he has just not spent enough time with them. I don’t know. Like you I also felt depressed reading the chapter on DS and I felt that way when reading the chapter on kids with severe disabilities as well. No where did I see any of the joy that these kids often bring to these families. The camaraderie that families find joining groups of other families who deal with the same issues. The listserves, and the conferences were also not dealt with or experienced as far as I could tell.
    I have taught children with these difference for over 20 years now and I don’t do it because I feel like a hero, I do it because I love what I do and the children and the families I have the pleasure of working with. I really think he did these families a disservice in his book.

  7. Doug Miller
    January 4, 2013 at 11:27 am #

    Nice post on DS. My problems with Solomon are (1) accuracy and (2) empathy. By emphasizing horizontal “otherness,” is he really advancjng the discussion of any one condition, or is he just muddling things up? And he has said that his goal is to create more empathy, but does he really with this book? He is clearly brilliant and a great writer, but is he truly empathic himself? Did anyone read the end yet? He seems pretty concerned about getting children without these conditions (see recent piece by C. Nehring). It seems more like “aren’t I brilliant for doing this research and fitting it all in one book?” To me, it’s almost exploitation. Especially the part with the parents of the Columbine shooters.

    • Lisa
      January 4, 2013 at 5:31 pm #

      I’m getting that sense, too, Doug. I haven’t finished the book yet, but I’ve read some reviews by people who have, and the general takeaway seems to be what you’ve expressed here.

      • Doug Miller
        January 5, 2013 at 2:10 am #

        I’m probably being too sensitive, but I heard him again on NPR this morning, saying that the reasons for the Newtown shootings are “unknowable,” and of course he talked about Columbine also. But the causes of some other conditions described in his book are fully knowable and known. What do these things really have in common? Just that life for the parents is difficult? If so, why not a book on all parents who have it tough, or all *people* who have it tough?

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