Read: Jennifer Johannesen, No Ordinary Boy

My partner Jennifer recently published her first book. It’s a slim volume of 145 pages called No Ordinary Boy: The Life and Death of Owen Turney. One could generically describe it as memoir or narrative non-fiction. No Ordinary Boy is the story of Jennifer’s journey with her severely disabled son Owen, who died last October—unexpectedly, and leaving us all grieving—at the age of twelve. I knew Owen for approximately 4 years prior to his passing, and I was there while Jennifer wrote the book, witnessing the trials and difficulties of a first-time author working through her grief as she captured the different aspects of her story and forged them into a coherent, intelligent whole that’s significantly more than the sum of its parts.

In the last few weeks, I’ve watched as Jennifer has struggled to succinctly ‘explain’ what her book is about to different people. Before it was published, it was easier. This is what the book is. It’s what I’m working on. Defined through the act of writing, of exerting control, of applying change, of restricting who could see it, read it, provide feedback. Who—and how. Trust was bestowed upon a very small number of trusted advisers and readers who gave feedback, made substantive and copy-editing suggestions, carried her forward through the gift of encouragement and positive response. Every so often, someone would say, What I read in your book was this. Which, I think, leaves first-time authors awe-struck and amazed: Really? I didn’t know that it could mean that to someone.

The surprise and delight of hearing about what others see in your work, and the stress of having to formulate a routine, short and universally resonant response to the question So what’s your book about? are, I believe, common occurrences after launching a book into the world.

We’ve known since the late 1960s that assigning a single, ‘authoritative’ interpretation to a text which is anchored in the biography and context of its author is at best limiting, and at worst simply incorrect. Roland Barthes argued this convincingly in The Death of the Author. While many more traditionally oriented schools of literary studies take issue with the idea, writers can experience it directly in their own work: the sense of ‘I didn’t know it could mean that to someone’ is an illustration. A book is always more than the author’s alleged intent; more, different, better, richer, more textured, more nuanced, more literary. It becomes these things in the eyes of the beholder: the reader sees—and produces, generates—these additional layers of meaning in the act of reading, interpreting and relating the text to his own context. Not initially an easy concept to wrap one’s head around, certainly uncomfortable for authors, and theoretically not entirely unproblematic, but practically true as anyone who’s ever written creatively knows.

No Ordinary Boy is multi-faceted and layered in this way; readers will find their own meaning in it. It will be a different book to every one of its audiences. Jennifer’s own surprise at how ‘the story came together’ into a coherent, meaningful, flowing narrative with a beginning, a middle and an end is an expression of a new author’s initial uncertainty. The book, in a sense, discovered itself through various ‘false starts.’ She writes,

Before Owen’s death, I had planned to write a guidebook—an Advocacy for Dummies sort of book. I started the project many times, each effort ending in frustration. I eventually realized: I have no universal advice to give. No tips or tricks […] If I wrote a guidebook, I thought, it would be relevant only to people exactly like me (No Ordinary Boy, p. 8).

So what is No Ordinary Boy, and who is it for? At the most surface level, it’s a memoir describing approximately a 13-year time frame during which Jennifer discovers that there are medical complications while she is pregnant with her first child which require multiple surgical interventions prior to giving birth. She learns to care for a very complex-to-care-for baby who gradually reveals multiple severe physical and developmental disabilities; embarks on a bewildering journey through various therapeutic, educational and healthcare institutions (sometimes because of severe, life-threatening crises, sometimes in the interest of improving Owen’s or his family’s quality of life); and eventually experiences his sudden death and her (and her family’s) grief in response.

On a deeper level, No Ordinary Boy raises and addresses several key issues about disability and its relationship with family, institutions and the world. Jennifer tackles some particularly difficult and uncomfortable questions, such as: What’s best for my family, which consists of more people than just my disabled son? Or: Who are we doing all this educational and therapeutic work for? And: How can I make decisions on behalf of someone who cannot express his own preferences? The book traces the author’s personal growth through key insight after insight. Jennifer’s formidable intellect and keen intuition allowed her to ask and answer these questions for herself—and in the process, I believe, forge a better existence for her son and family. She does not permit the relentless demands of caring for a child like Owen to suppress her searching mind in favour of merely soliciting empathy. She knows that we (family, friends, institutions, the public) would be all too keen to respond with sympathy and pat answers to ‘disability’ and its various challenges. But our offers, though well-intentioned, would be meaningless to a family like Jennifer’s. There is a chasm between us and families dealing with disability that sympathy alone cannot bridge.

Unlike those who believe that disability is by necessity something that requires an outward-directed advocacy—an imperative to tell the world and demand its response—I believe Jennifer finds truth in a somewhat modern adaptation of Carol Hanisch‘s feminist idea that the personal is the political. In contrast to Hanisch’s notion that there are no personal solutions to the problems of minorities or those at the margins, Jennifer’s journey shows that an intelligent, awake, critical perspective can and should be applied to the ‘common sense’ truths of medical, educational and therapeutic disciplines and institutions. By shining a spotlight on the ‘small things’ and questioning their relevance, applicability and wisdom at each step of the way, she shows us how the courage to know ourselves can bring about positive change—in ourselves, our families and our environment. Her focus, however, always remains on the personal first and foremost: she challenges herself to discover and apply the right or correct solution to every problem, not just the typical solution, and she looks to things under her immediate control first instead of asking the world to change in response to Owen’s challenges. Her chosen approach is much harder but also infinitely more productive than merely following what society and its institutions suggest; it is also genuinely valuable to everyone else grappling with the same subject matter—and that, of course, elevates it from the personal back to the political.

In a healthcare system that’s chronically unable to provide comprehensive, patient-focused, holistic and programmatic preventative and responsive care, it is up to the patient (or his caregiver) to ‘own’ the trajectory of his interactions with the system, to decide what’s best at every step—particularly if what’s best is not what the specialists are saying, or what the ‘system’ thinks. When it comes to therapeutic practitioners and institutions, it’s always best to ask who is being measured, and to what end. Jennifer describes how she gradually learns that (communications and occupational) therapists have their own quotas, metrics and objectives to fulfill which often have little to do with Owen’s development. Instead, attempts to help Owen develop a system of alternative communications (he could not hear, speak or use his hands to communicate) mostly just result in a lot of incredibly hard work to which the author (heartbreakingly) dedicates a number of years of her life, to essentially no practical avail (other than finally gaining the key insight that “[no] matter what I do, it will never be enough” (p. 109). The government requires that all children receive an education, so Owen goes to school for a number of years. Some of the more touching passages in No Ordinary Boy chronicle Jennifer’s discovery of how schools for disabled children ‘game’ activity reports sent to parents when the evidence suggests that disabled children actually experience few educationally or socially useful activities and are mostly simply ‘managed’ until it’s time to go home.

In each case, Jennifer eventually ‘opts out’ of the programming offered to her and Owen. This results in greater personal and family peace, a reduced-stress environment of her own construction consisting of providing Owen with educational, social and therapeutic experiences provided by a small, hand-picked group of in-home caregivers, many of whom have become our friends over the years. The final culmination of Jennifer’s ‘opting out’ is when neurologists suggest that Owen might be a candidate for deep brain stimulation, a new form of therapy that sees the insertion of a small electrode into the brain and delivers low-voltage electricity in order to achieve a certain (unpredictable) amount of relief from the involuntary muscle contractions Owen suffered from all his life which made caring for him extremely challenging. The parents decline, and Jennifer writes,

I left that appointment practically skipping. I felt I had passed a test, or resisted a strong temptation. Not because we decided against the surgery but because I knew we had reached the best decision for Owen, given everything we knew and all we had experienced, in spite of the forces moving us in a different direction. […] With this one decision, I enjoyed a surprising new freedom. There was nothing left to hold out for, no more straws at which to grasp, no more hope for improvement, no more theories to explore, no further trials. Finally, Owen was just free to be. I have no doubt he felt just as much relief as I did (p. 139).

No Ordinary Boy, then, is the story of discovering  and experiencing individual freedom as the result of applying our critical faculties to the big questions we are challenged to answer in our lives. It is the story of a mother’s personal development and courage—not the ‘courage’ many people attribute to someone tasked with the Sisyphean task of caring for a severely disabled child (“I could never do what you do!”), but the courage to ask hard questions about every aspect of caring for such a child, and the courage to say no to following the typical trajectory, the path laid out by the institutions.

Asking—and answering—these questions requires tremendous strength, honesty and trust in one’s own abilities. It shows us the positive change that can come as a result of having the willingness to look at ourselves and our place in the world, and how to progress towards a better world—for ourselves, those who depends on us, and those who will come after us.  And that is what makes No Ordinary Boy relevant to all of us, not just to parents of children with disabilities, or healthcare practitioners.

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I have so far refrained from commenting on Jennifer’s book as a written work. It is beautifully written, full of keenly observed and remembered passages brimming with natural, often elegant dialogue; relevant and witty internal monologues helping us understand complex medical or philosophical matters simply but never in a reductionist or dumbed-down manner. The author’s use of language is natural and conversational which should make the book well-received by, and easy-to-digest for, a number of different audiences.

It should also be stressed that, while No Ordinary Boy naturally highlights aspects of Jennifer’s and Owen’s story that illustrate some of the deeper philosophical issues it’s trying to address, it is by no means an incomplete narrative—or difficult to read. I imagine that parents of disabled children will find much to emotionally connect with here. They may recognize aspects of their own journeys in No Ordinary Boy—through the warmth, immediacy and confidence of Jennifer’s language and the ‘everywoman’ appeal of her narrative, especially evident in the early chapters dealing with the discovery of her difficult pregnancy and Owen’s first months in the neo-natal intensive care unit. It is, next to its intelligent and emancipatory message, also simply a great story that demands to be read.

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No Ordinary Boy: The Life and Death of Owen Turney is available directly from Jennifer’s website or on Amazon.com.