Canadian journalist Ian Brown spoke at the National Roundtable on Caregiver Health in Ottawa Friday. Ian is the author of The Boy in the Moon , an award-winning memoir of his family's experiences raising son Walker, who has a rare genetic condition. Walker, 14, can't eat or speak, wears diapers and punches his head mercilessly.
Ian spoke about a health system that's so specialized, paper-based and unwieldy that it adds a whole new layer of stress and helplessness onto the lives of parents of children with complex conditions. But what most struck me about Ian's talk was his assertion that no health professional ever helped him address the deeper question of the meaning of Walker's life.
"It was seeing him in pain, when he hit himself, that was most unbearable," Ian said. "Not a day went by that I didn't despair of relieving Walker's pain or that I didn't hate myself. Yet there was no one to talk to about this bottomless abyss of darkness.
"It wasn't the keeping him alive or happy or from hitting himself that was most hard, it was that I didn't know what the meaning of his life was. Or whether he had an inner life. The most important question of all was about his soul. I don't know how you measure that in the medical world. That matters to the parent and it matters to the disabled child."
Ian spoke about how he has come to see that children with intellectual and physical disabilities "make up a community of profound value for the rest of us if we can shift the way we think." He noted that in our cure-obsessed culture, children like his son discourage doctors, leaving them with a sense of resignation. "But there is another way to approach the problem of the incurably disabled," Ian said. "I accept Walker as my equal, not just as someone who needs my help. He is someone who can teach me way more than I can teach him."
Ian noted Walker's propensity to knock glasses off tables -- often waiting for the split second when his father wasn't watching to jump into action. "I used to think he was a psychopath," he said. "But when I tried to stop fixing him and tried to understand him as he is -- not as I want him to be -- I realized he laughs when he does this because he has succeeded in showing me that sometimes he can be smarter than me. I imagine that's a liberation for him, but especially for me. It frees me from the impossible standards of normal success in our cure-oriented world. Walker's gift is that he makes me slow down and notice the value of being 'as I am' and 'as he is.' It's an antidote to the grinding survival of the fittest."
Recalling his visit to the L'Arche homes in a village north of Paris -- where people with intellectual and physical disabilities live with able-bodied assistants who choose to support the community -- he said: "I have rarely felt so alive and so alert because I could concentrate on what was happening, as opposed to what was supposed to be happening. I didn't have to exhaust myself trying to fix the problem." He noted that days at L'Arche were organized around the sharing of breakfast, lunch and dinner -- whereas in many facilities for kids with severe disabilities, children rarely eat together. "The efforts of the caregivers there are to make the children more like us -- 'normal.' They are trying to fix someone or cure someone or improve someone so they can be included in our lives. I'm not sure how people came to call that inclusion. Why don't we make ourselves more like them? Why don't we include ourselves in their way of being?"
Ian spoke of a dream community he envisions for Walker's future. "It would be a village of homes created for and by the disabled, with a dozen extra studios. People like us -- artists, musicians, doctors, scientists, researchers, parents who need a break -- could go and stay in the studios for three weeks at a time. The only requirement is that we eat breakfast, lunch and dinner with the residents and once a week we have to give someone a bath. The rest of the time we can focus on our work. In that three weeks, we would be included in the world of the disabled in a way that would change the way we think. We would no longer think of them as 'the other' but as a human being who has a contribution to make, however subtle it is, and no matter how unwilling we are to recognize it." This, Ian says, would lead us to "see the world in a new, fresh, original, and free way."
Some of Ian's suggestions for improving health care for children with severe, complex disabilities included: an electronic health record so that parents don't have to repeat their child's history interminably; a national disability iPod app where parents could search for services in their area; and a dedicated waiting room in hospitals for children with sensory and behaviour issues. He questioned how it could be that if he wanted a new knee he might have to wait in the system for six months, "but it took eight years before we could find a place where Walker could be cared for adequately."
"To 'care for your own' is an ancient impulse," Ian said, "but children with complex disabilities are often beyond the care of the average family. Instead of talking about family-centred care, we need to talk about community-centred care. It takes a community in every case. A family isn't big enough or deep enough."
The national roundtable was funded by the Canadian Institutes of Health Research and I will report its findings in future.