The absence of normal 'frees us'

I have eagerly anticipated posting this piece by The Boy in the Moon author Ian Brown (with son Walker, above). It is a brilliant essay that speaks to a central question for many parents of children with complex disabilities: What is the value of my child's life when he or she will not achieve conventional success? Ian, a veteran feature writer at The Globe and Mail, wrote this piece for the summer issue of BLOOM. It reminds me of many things my son has taught me, but which are sometimes hard to keep top of heart and mind in our culture. The photo was taken by Globe photographer Peter Power. I can't wait to hear what you think of it! Louise

The absence of normal 'frees us'
By Ian Brown

Without question the most common reaction people have, when they find out I have a seriously disabled son, is “I don’t know how you do it.”

It’s an interesting reaction, because in many ways, the act of physically caring for a boy like Walker (photo above) is the easy part. Walker is 14, looks about 10, and has the mental function of someone who is about two or three. It looks like he always will. He can’t speak, and because he can’t speak, I don’t know how well he sees or hears, or why he hits his head again and again if I let him, or where he’s in pain. He can’t swallow, so he has to be fed with a tube, and he can’t figure out the routine of going to the bathroom, so he has to wear a diaper. But those are easy problems to fix, albeit time consuming and sometimes a little dreary: a diaper is a diaper, and sometimes it is full and needs to be changed.

What I found more upsetting, practically from the day Walker was born, was a bigger and more unknowable question: did he have an inner life?  Did he have any intentions, and therefore did his life have any purpose, any meaning?

That’s a hard question for any of us to answer, but it’s especially hard to answer for a boy who cannot speak or reason, and whose care consumes countless resources and many, many hours of human effort. Because I did that calculation too, when Walkie was an infant:  if he lives at 10 per cent of human capacity,  and if the care of him reduces my wife and I to 30 per cent of our human capacity, and if my daughter Hayley is set back 30 per cent, because of him—well, add those up, and you have two and a half lives spent to sustain the so-called life of one broken boy. Is that worth it?

I couldn’t tell, and so I spent a lot of time looking for some way of justifying his life, lived as it is in semi-darkness. I found proof again and again, if only I remembered to look in the right places. Walker’s life is not a success measured on any conventional scale of human success: he is never going to earn his living, never mind an income big enough to buy a fancy retirement home for his Mum and Dad; he is not going to go to Harvard or anywhere else that will make his parents proud; he is never going to invent a faster, easier way for people to spend money on the internet. The value of his life, if it has a value, will have to reside in his life, per se, in the sheer fact of his existence.

Gradually, I have begun to realize that he has a way of intensifying a moment, a way of making me take the time to look at it again, more closely, without an interfering agenda. He slows things down, and in the technology-mad world most of us scurry through, that is a valuable talent, even if it is not intentional. When his sister deigns to read to him (she has a busy life of her own) and his face lights up like a beacon, he forces me to pay attention to what is making him engage so intensely: his gorgeous sister, holding this weird contraption we call a book, chanting a story in the ancient rhythms human beings have used to make each other feel things since we first started telling stories. I don’t think he understands a single word, but he understands the importance of that hallowed ritual, and his pleasure is so intense and unfiltered and therefore contagious that I have no choice but to remember how important the act of sharing a story is—fundamental, you might say, to human existence.

When I walk down the street with him, pushing his chair with my elbows so I can lean forward and talk into his ear, out loud, about the sights we behold on the boulevard before us—the return of the white miniskirt, for instance, or the popularity of the clunky Dutch bike in Toronto these days—he goes into thrills of glee. He can’t contribute to the conversation, but he apparently loves to be on the receiving end of one, to be thought of as someone who can listen and appreciate the fact that two people are talking about the world around them. I often forget how important that transaction is. But not when I am with him, because he will not let me forget it.

One of the things Walker likes to do when he’s with me is sweep anything on the table in front of me onto the floor. He knows I’m always watching for this act of subversion, and he waits and waits and waits until I am distracted for even a fraction of a second, and then he makes his move. It’s as if he’s saying, really, how important is that newspaper/glass of wine/BlackBerry? Then he throws his head back and laughs.

For a long time I worried this was evidence that he was a sociopath, that I’d end up one day nattering to him through the Plexiglas of the visiting room at Kingston penitentiary. I must have watched him do it 1,000 times, to my great dismay, before I stopped worrying about why he wasn’t behaving like a normal boy, and began to try to understand him as he was, a boy with an unusual and persistent habit.

Eventually I figured out that Walker knows he is less capable than others (it makes him feel lonely and sad), and that the table clearings are a way for him to show me, once in a while, that he can trick me. At those moments, if only for a moment, we are suddenly equals. I imagine this is a bit of a thrill for him, and even a liberation. But it is an especially great liberation for me, because it allows me to be his equal, in a context of our own making. Yes, smarty pants, I can say in all honesty:  you got me that time. And I can be happy for his achievement. We can relate to each other not as we are supposed to, not as others insist we should, but as we can, in a way that makes that moment ours and ours alone. That is freedom—not only of the mind, but of the heart.  It is one of the deepest and most unalloyed freedoms I have ever felt.

Walker gives me the opportunity to observe another human being, without self-consciousness: that is worth his weight in gold. (About 95 pounds worth, these days.) I get to love him as he is, because he gives me no choice, and so we can be who we are, weary dad and broken boy, without alteration or apology, in the here and now. He is the antidote to the stark emptiness of the survival of the fittest. He may not be much on the evolutionary scale—“a deleterious effect of nature,” a geneticist once called him—but in my experience he has few peers as a route to developing what Darwin himself in The Descent of Man called the evolutionary advantages of “the social instincts . . . love, and the distinct emotion of sympathy.”

You can say, of course, how can you know any of this? All this value that you imagine resides in Walker’s company—don’t you worry that you’re just imagining it? And the answer is, yes, of course, I may be imagining it. I may be dreaming. But the average father of the most normal children doesn’t know a lot of the time if he and his sons and daughters aren’t making up or imagining the bond between them. Every human relationship exists, in one way or another, on the level of illusion. Only a fool, or someone intent on disappointment, pretends otherwise. At least Walker and I don’t compound that confusion with words.

It’s the very lack of so-called normal expectations, the absence of the possibility that we can ever “achieve” much or even disappoint each other, that frees us to be ourselves with each other, to remember who we are and what actually matters, as opposed to what it supposed to matter. That is a great, great gift—and I say that as someone who hates to use the words “disability” and “gift” in the same sentence.

I am beginning to realize that the world I occupy with Walker, my intellectually disabled son, is almost by definition anti-establishment; a world where social orthodoxy and conventional wisdom and received opinions have very little value. That turns out to be a good vantage point.

My only regret is that it has taken me 15 years to see my way to this conclusion—15 years to see through the exhausting demands of day-to-day care of a boy like Walker, to a redeeming value of his life. I can’t help but wonder why it took so long, or why I had to conduct the search on my own. I also wonder why the medical profession, and the care profession in general, don’t help parents toward these insights—as the church might have in the past.

But this is a scientific age. Walker would not be alive today were it not for brave and brilliant medical technology. Medicine allows these children, who would not survive on their own, to live, thus creating what amounts to a new strain, a new genre, of human being. But once they leave the hospital, the parents of a disabled child are on their own (especially if the disability is one no one knows much about, and there are lots of those). It’s not just the punishing and seemingly endless routine that makes 24-hour-care of the disabled onerous and crushing: the absence of any apparent meaning to the work, of hope and purpose, is equally daunting.

Could the medical and caring professions make a contribution here, by teaching parents and caregivers how to measure success in less obvious and less quantifiable but equally important ways? I know it’s not their natural purview: they prefer results, and replicable ones at that. Even so, a few far-seeing hospitals (Toronto’s Hospital for Sick Children, for one) and some medical specialties (genetic counselling and developmental pediatrics) have begun to introduce the conversation into their training. But it should be standard practice, for the sake of the doctors as much as the parents.

The value of the human spirit, even at its subtlest and most obscure, is a question the whole world always needs to question, and answer.

The Boy in the Moon has won three prestigious Canadian awards and Ian Brown's reporting and writing have won more than a dozen national magazine and newspaper awards.