Saturday, July 30, 2011

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.

Reactions:

12 comments:

A heartfelt thank you to Ian Brown for crafting an essay that puts into words what many of us families feel but have not been able to express.

It is quite profound to finally read the words associated with those feelings.

And gratitude to Louise for facilitating this piece.

Louise, I am reading Brown's book right now and am thrilled to have the chance to thank HIM for his words, for his ability to convey such difficult thoughts and ideas and suppositions and conjectures -- all moiling in my own head, struggling to be written, to be expressed, to be even thought freely. While reading the book and now this beautiful essay, I wish that I were sitting in a room with Mr. Brown and perhaps a handful of other like-minded people -- we might talk; we might weep; we would surely laugh. I can't express how important this book feels to me -- both as a writer and as a mother to a severely disabled sixteen year old girl. Thank you.

What a wonderful essay! Thank you Louise and Ian Brown.

I am so very grateful that Ian has learned from Walker and chosen to become a teacher on his behalf. It is only in this way that medical professionals can learn and provide new parents with hope and purpose.

Ian wrote:
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.

This reminded me of the experience of attending the family dance at the annual Down Syndrome Association of Canada conference. There was a thrill of dancing to the music in a care-free fashion like never before. There was an indescribable magic and joy in the room. Indeed, the leaders, the teachers, the ones who gave the rest of us the "gift" of a crazy-fun expression in dance that evening were the people with Down syndrome.

We seem to be a society that has forgotten that true love is a selfless endeavour, not an equal trade off. When I picture Ian walking down the street telling Walker about all the things he sees knowing that he might not understand a single word of it or Walker's beautiful sister taking time from a busy young woman's life to read to him I see love, true love- the kind that brings tears to my eyes. Thanks for that Ian!!

Jim Dolmage had trouble posting his comment, so I am including it here:

Readers should understand that Brown is writing about his life as it used to be. He uses phrases such as 'day-to-day care' and '24 hour a day care' and relates many family anecdotes that hold the implication that Walker still lives with his family. From Brown's other writings I understand that Walker is in a private care facility out of Toronto and has been for several years. Since Brown is dispensing advice I think readers should be aware of the facts of his experience.

Parents I know have understood since the birth of any of their children that every child contributes to the family. It doesn't take very long for parents to understand that every child will also contribute to society - how is not always immediately clear. Wise parents also quickly learn that they should never primarily describe their child in terms of perceived deficits and labels are always more limiting than helpful.

My children will say that siblings should not only live together but they need to go to school together. Our family had to change school boards to accomplish that. Was it worth it? No question. Does segregation hurt children and families? No question.

Having experience with Circles of Support, I would endorse the concept as beneficial for both families and individuals - to keep children with their families, in their local schools and to help individuals reach their potential as adults.

As well, sometimes it takes government financial support in the form of individualized funding to do it all. Such funding amounts to a small fraction of the financial and emotional cost of placing a child in full-time care. Unfortunately, at this time there is a shortage of individualized funding.

Finally, we learned a lot from other parents through organizations such as People First, Integration Action for Inclusion, and Family Alliance Ontario. It is most helpful to get advice from people who have taken the same path you would like to travel.

Our son died at 29 and we miss his contributions daily.

With regard to this comment:

Readers should understand that Brown is writing about his life as it used to be. He uses phrases such as 'day-to-day care' and '24 hour a day care' and relates many family anecdotes that hold the implication that Walker still lives with his family. From Brown's other writings I understand that Walker is in a private care facility out of Toronto and has been for several years. Since Brown is dispensing advice I think readers should be aware of the facts of his experience.

_________

This information in no way diminishes the impact of Ian Brown's words. His words are profound and really hit home to me. He lived it, he felt it and he shared it. I get it.

As a person with a cognitive impairment, and an educator, it still took me way more than 15 years to figure it out. :) The point is that one figures it out. It is amazing to be close enough to neurotypical to be able to observe folks lost in their delusions of what is important and far enough from neurotypical to know that I can't participate in those delusions. I live in a world where I hope to find an interesting, meaningful and engaging way to live my life. That's all. And that works for everyone regardless of their challenges.

Hi Jason -- Perhaps you can write about this topic for us sometime?

Do you ever find it hard to hold onto what's important given our mainstream values?

Do you work with people with more significant disabilities at your university?

I hope what you say is true -- that regardless of degree of disability, a person can lead a rich life.

A Brilliant Essay. So what is there more to add? Your words have hit home, because of the book I am writing about (with testimonies of) brothers & sisters of disabled children (in all shapes and sizes, without a distinction in disabilities:- they do not matter in my book).

Because of this, and because I am a sister of a mentally disabled / blind brother, there's one thing I want to react to since you raised a question, close to my heart.

It is to this passage: 'I can’t help but wonder why it took so long, or why I had to conduct the search on my own.'

Firstly, I could not agree more with Jason NOLAN's words: 'The point is that one figures it out'. So many people will never.

One of the big reasons for writing the book is that I felt nobody in a 'caring' family should be in it alone. And since brothers and sisters are 'fresh' in their thinking, they are the obvious first step for help.

It further got me thinking, because after having been talking to many sibs this past year in preparation of the book, I have heard your words many times before, such as: 'when he was bullied one time, I felt so sad, because I knew those kids would never understand who he truly is. So pure.' But they never got to me like in your - intelligent I may say - essay: You use the word FREE, and that is exactly it.

THis is the part siblings can very well play in their families: helping their parents to see their child for who he is.

This is logical to me. Siblings are - first of and foremost and above any disability, others see - brothers and sisters. Therefore, they are on the same level. Unlike their parents they are not burdened with an outlook on life, that is based on (negative?) experiences and there fore fear for the future, and/ or with feelings of guilt ("I should have/could have,etc").

Siblings are still FRESH, do not any know better than their life, at that very moment. At the very same time, see their parents struggle, and ask themselves: 'why make him into a superhuman? He'll get there, where he will end up, when he is ready).

Let me speak for myself: the best thing about growing up with my brother, so having been influenced by him form the age of 3 years, is that I felt exactly that: free. Yes, I felt I had a heavy load to carry sometimes - mentally and physically -, but it is that feeling, that TRUE KNOWLEDGE that not many things count in life, besides sharing 'slow' moments together and enjoying that moment, that I kept.

That is why I think siblings have a more interesting part to play in families.

Of course, knowing how to address this for any parent/sib, is an entirely different question! So it is exactly that, my book will address, and so hopefully becoming a helping hand for the professionals as well as any parent or friend of the family.

Many thanks for your insights and I hope to hear your comments on my book, when I have finished writing, and translating it in English.

And, if you would do another essay, I would love to hear how your son has influenced your daughters views in/on life.

Anjet, journalist & writer of sibbook http://koningskinderen.wordpress.com/sibbook/

Thank you Louise and Ian for this lovely post. It has been interesting to read the evolution of this story since the series ran in The Globe four years ago.

Like other commenters I was interested in Mr Brown's regret that it took him 15 years to realise the value of Walker's life. My first thought was that now with Walker residing elseware part-time, he actually has the time to reflect on this!

I wonder if in time I will reach the same positive outlook on my child's life. I am not sure that I will. I really fear what her life would look like without a strong advocate. We are able to do a lot for her and still fall short of providing what I would view as optimum, or even sufficient.

Mr Brown's son is more than three times the age of my child yet our geneticist used similar descriptors. I know this is true of other children in her age group. When I met Mr Brown a few years ago I mentioned that I thought he was quite kind with his descriptions of the Hospital for Sick Children. The story from the book of waiting five hours for an echo only to be told Walker could not be sedated, even though dentistry had sedated him recently, illustrates an all-too-common occurrence for families.

Hi Jason!! (*waving*)
.

I'd love to write for you at sometime on this. I would be honoured. But not until
next spring, due to work commitments.

I work with people with greater physical impairments and cognitive challenges on par with mine. A very rewarding group to engage with as we co-create solutions, to the best of our abilities.

I totally agree with Ian, that neurotypical and fully mobile adults tend to lose touch with what is really important in life, which is living it to your fullest. And that those who are in touch with living their life to the fullest lead the richest life, regardless of the challenges, or perhaps because of them. Given the right supports, of course.

Hi Anonymous!

Dear Louise,

Another insightful article that will help others like me.

When Savannah started to lose all of her abilities one by one I dreaded that she would hate her life and what it had become.

She taught me success and a meangingful life sometimes came from simply having a pain free day or seeing her face light up when we took her swimming....even thought she lost the ability to verbally communicate a few months after diagnosis, her eyes said so much...

As Mr Brown suggests, the gift and teachings in these simple things from a disabled child are priceless.

Again, thanks for always posting articles that continue to make us look within and see that a disabled child or a special needs child can teach society and our families so much...one of which is to be grateful for life.

with love
Diana x