We recently had our first meeting of the PHBC, and discussion was lively and intriguing. Andrew Solomon’s Far From the Tree (FFTT) provides is an excellent guide to the formation of identity and the relationships of parent to child, as well as how society functions around issues of difference. Our conversation spanned the first three chapters of the book – Son, Deaf, and Dwarfs. This blog post is by no means a comprehensive discussion of the topics in the book or the issues we discussed – these are just my own notes and reflections. I strongly encourage you to read the book and have your own experience with the ideas and stories Solomon explores.
The first three chapters were captivating. Solomon brings us closely into the lives of people in situations (“predicaments”) with which many of us are generally unfamiliar – he interviewed 300 families over 10 years to write this book. Reading FFTT expands our sense of empathy and connection with their struggles and triumphs, and raises questions about how we construe our own identities, view difference, and construct society. Overall, I found the reading to affirm the importance of parental and self-love. I was also inspired by the stories of compassionate and knowledgeable caregivers (doctors and others) who provide critical services to those in need. Suffering is amplified when any of these fail. The onus is on all of us to create the conditions that support compassion, knowledge and wisdom in ourselves and in society. FFTT is an exploration of identity, relationship, and society – but it is also an exhortation to be better.
Identity is both vertical (continuous with familial identity, heritage, genetics, etc.) and horizontal (shared with people outside one’s family). Solomon describes two of his horizontal identities – being dyslexic and being gay – and how these identities were met by his parents and the world. His mother, to her great credit and to Solomon’s benefit, went all-out in treating his dyslexia. His experience of mastering a deficit gave him tremendous affirmation and pride in his intellectual ability, and, as he describes it, spurred him onwards in his academic pursuits. One could imagine the story going differently, as it does for many children. His mother’s intent support and self-sacrifice made all the difference in the world.
Solomon’s other horizontal identity and experience is of being gay. His life began at a time when being gay was criminalized, then pathologized by psychology and psychiatry, to now a much more affirming acceptance (though homophobia and hatred are still major problems in society, and deserve our attention). The contrast between how his horizontal identities were received is informative; writing this book seems to have allowed him space to view his experience more broadly, with acceptance, depth and complexity. At the end of Son, he writes, “I wish I’d been accepted sooner and better. When I was younger, not being accepted made me enraged, but now, I am not inclined to dismantle my history. If you banish the dragons, you banish the heroes – and we become attached to the heroic strain in our personal history. We choose our own lives…Rumi said that the light enters you at the bandaged place. This book’s conundrum is that most of the families described here have ended up grateful for experiences they would have done anything to avoid.” We suffer more by resisting and avoiding our situations; families and individuals can take up their challenges and make their difference a point of cohesion, not aversion, taking them on a profound journey of discovery, love and insight. This path is hardly without friction and adversity, but it is transformative and deepening.
Indeed, Solomon makes it clear that difference is ubiquitous, and yet society is stuck in “normative” frameworks that project and enforce conformity. We don’t know enough about the details of how we’re different, and we assume that there is a norm or ideal – and then we introject a sense of failure at not having met the ideal, with resultant guilt, anger and shame, or alternately judge and alienate others who don’t meet the “norm”. Certainly, there are important ways we do need to “conform” and communicate our similarities – particularly our bedrock similarity as interdependent human beings who need each other’s care and support. Our physical, mental and emotional differences must first be seen as contiguous expressions of our common humanity, deserving of understanding.
But what is “normal”? Is a “predicament” an illness/impairment, or an identity? For the conditions described, it can be viewed through either lens. Deafness and dwarfism can be seen as impairments, but they are both associated with their own distinct and affirming cultures which are testimonies to the importance of “tribal” connection, resilience and affirmation. Solomon describes a culture evolved around Anorexia, with online support groups to support the Anorexic “identity” – but most of us would agree that this kind of identity is medically harmful and deserves care.
In each chapter, Solomon raises the question of how medical treatment affects difference. There are possible hormonal treatments that might decrease the likelihood of a child being gay. Deafness might be (at least partially) treated with cochlear implants or other advances. Dwarfism might be altered with hormonal treatments or limb elongation. These are complicated, thorny and individual issues, to say the least. Social acceptance and understanding of difference make a huge impact on these kinds of decisions, many of which would be made before the individual with the difference is capable of making their own informed choice. In Sweden, parents of deaf infants are required to meet with deaf adults before deciding on cochlear implants, for example; the devices are seen as a threat to deaf culture, identity and pride. Yet Solomon notes (p. 114) that “vertical demand for medical progress will inevitably outflank any horizontal social agenda.” In my eyes, there’s a case that “medical progress” in the elimination of difference is potentially harmful, both to the individual and society.
Our impulse might be to have “perfect” children without any issue that would cause them suffering. Solomon also makes the point that parents considering these “remedies” are also treating their own insecurity and sense that they are incapable of caring for a child with a difference; they may feel a sense of shame and guilt at having a child with a difference. I think the message is that we have more capacity to care for and accept than we might at first assume. In fact, that is the ultimate task of any parent and society-at-large – learning about and supporting each child’s uniqueness. Saying “I wish you were normal” might be heard as “I wish you didn’t exist”, not the message any caring person wants to send. (However, these issues are incredibly personal, and Solomon is careful not to cast any choice as inherently wrong. Each decision has pros and cons; the major “con” I’m concerned with is aversion to existing difference. See http://www.newyorker.com/online/blogs/newsdesk/2013/04/north-dakota-abor... .)
Solomon writes (p. 18) “we are overextended in the travails of our own situation, and making common cause with other groups is an exhausting prospect.” Yet this is precisely the parental task, in a nutshell. Parental love is a “long emotion” towards another individual that is complex, life-long, and life-defining. It is fraught with frequent imperfection, and tragic shortcomings. The most heart-rending stories in FFTT relate to parental abandonment and aversion on discovery of their child’s difference. All adults must come to some kind of reckoning with their childhoods. Wisdom says to let go of the ways our parents let us down, and take responsibility for who we are and who we will be. That can be an extraordinary task. Solomon quotes his mother (p. 15): “Someday you can go to a therapist and tell him all about how your terrible mother ruined your life. But it will be your ruined life you’re talking about. So make a life for yourself in which you can feel happy, in which you can love and be loved, because that’s what’s actually important.” A therapeutic relationship with a caring professional can help tremendously, though. It’s not easy to let go of the past, forgive, affirm or even become ourselves – and we can’t do it alone. No man is an island.
Just as parental abandonment and aversion scars, so does societal aversion, judgment and discrimination in all its forms. We are unable to change our childhoods, but we can certainly create the conditions for relatedness in our own current lives. The healthy journey of life is towards connection and wholeness. Understanding and appreciating difference - particularly what is considered "disability" - is central to this task.
Thanks to Andrew Solomon for making this point clear, accessible and powerful. Check back in early June for the next installment of the PHBC, where we’ll take up issues inspired by the next few chapters of FFTT.
© 2013 Ravi Chandra, M.D. All rights reserved.
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