The Boy in the Moon

I wrote my last post, Gifts and Gratitude, after listening to part of an NPR author interview with Ian Brown. Brown discusses life with his disabled son, Walker, and his book, 'The Boy In the Moon'.

The interview stirred up a lot of feelings within the disability community because of a comment he made about "disability masochists", which he defined as people who make their disabled child the most important, indeed the only important thing in their lives. He also said that he hesitated to write his book since he'd been turned off by some of the "misery memoirs" he'd read over the years.

After listening to part of the interview, I read some of the blogging going on about his comments. I found some wonderful, intelligent, very outspoken people out there who are raising severely disabled children. They weren't letting Brown get off easily for those unfortunate labels! I'm glad they were able to succinctly say what I was thinking.

I also turned to my Nouwen library to try and clarify my own thoughts about the worth of a life lived with severe limitations. I blogged a little about L'Arche, and what that philosophy means. It was a tiny touch of what it means, by the way. I'm so busy with day to day things that I don't have the luxury of writing as much as I'd like to.

Finally, I ordered my own copy of Brown's book so that I could put it all in context. Wow. What a cool find!

There is an entire section on his experience with L'Arche, including time spent with the founder of the movement, Jean Vanier. I don't know if he spoke of this in the NPR interview, because I never found time to listen to the entire thing. I had no idea that Brown was influenced by this community of people who live together, disabled and non-disabled. It was fascinating for me to read, although I must admit that I only got the book in the mail yesterday, and sped through it as fast as I could last night, due to very tired eyes and body. (Geez, I'm sounding pretty attention-challenged. I didn't listen to the entire NPR interview, and I skimmed the book. I plan to remedy both during my summer break. Being a school nurse has it's advantages!)

When I first read the term "disability masochist",  my honest fear was that I might fit his definition. It's not a nice label, no one wants the word "masochist" applied to them (no one I know, anyway). It didn't take me long to realize that there is nothing masochistic about my love for Daniel and the enjoyment I get from living with him and caring for him. If someone doesn't find this life fulfilling, then perhaps it could be seen as self-torture to continue on out of duty alone. Not in this home, though. 

In the end, I think it's an unfortunate term. His book is good. It's very thought provoking and well written. Brown is a writer by profession, and he tells a fine story.

Disability masochism is not really the important conversation to keep going. And for the record, I have never met anyone who fits the description. The parents I've encountered balance their lives the best they can. Having a child with extraordinary needs does make a huge difference in how you are able to organize your time, but it doesn't always have to be as limiting as might be imagined. I'm only speaking from my biased personal experience.

There are more compelling discussions that his book can and should bring about.

I love Brown's words on page 270.
     "These days I have a fantasy of my own. In my fantasy, Walker and people like him live in a  L'Arche-like community, with the help of assistants. It's a beautiful place, in a beautiful spot, with a view of the sea or the mountains, because for once, in this place, it isn't just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful--not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be "integrated" into their society, who have to adapt to their pace and their place. I can leave, I can go back to my more pressing and ambitious and even more interesting life, but I can also return to live with Walker, as Walker lives--slowly, and without much of an agenda beyond merely being himself."

Now, on to read Brown's book more slowly on this Saturday morning, and indulge a few of my own fantasies for the future. After all, nothing happens unless you first dream it.

Gifts and Gratitude

     I read Henri Nouwen's book, 'Adam: God's Beloved', when Daniel was about three years old. I'm the type of person who tries to make sense of things. I tend to live in my head, sometimes driving myself crazy with questions that don't have answers. The story of Adam is well-told by Nouwen, and it helped me make peace with disability.
     Nouwen was a priest and academic for most of his life. He wrote books, did theological research, and in general lived a life that placed intelligence in pretty high esteem. In 1986 he left university life to go and live with the mentally disabled in a L'Arche community in Canada called Daybreak. He would be their pastor for the next ten years.
     Part of his first assignment was to work with Adam, one of the most disabled in the community. He was taught to help him with the very basic tasks of bathing, dressing and eating. It scared him. He didn't think he had what it took to help someone with such severe limitations. He was afraid he might not do the job right, or that he would somehow hurt Adam. That was not the case. In fact, he later wrote that the friendship that developed with this very disabled, non-verbal man was one of the most transformative of his life.
      In Nouwen's book he wrote, "Speaking about 'Adam's Gift' is not romanticizing an otherwise quite demanding and unrewarding life situation. Adam's gift was a reality of everyday living...Amid all the planning of meals, cleanups, visits to the doctor, shopping, repairs, and countless other things to do, that question of the gifts of Adam, Roy, Michael, Rosie and John (other disabled core members) always remained central. Everyone knew that they would not remain good L'Arche assistants for long if they weren't richly rewarded--by the spiritual gifts of people like Rosie and John. They were discovering that true care is mutual care. If their only reward had been the small salary, their care would soon have become little more than human maintenance."
      Once, a pastor friend who taught theology visited him at L'Arche Daybreak. He felt that Nouwen was wasting his time and talent working with Adam.
     His friend asked, "Why spend so much time and money on people with severe disabilities while so many capable people can hardly survive? Why should such people be allowed to take time and energy which should be given to solving the real problems humanity is facing?" (A question that some still have, and one that reminds me of Judas objections when Mary used expensive oil to wash Jesus' feet.)
     Nouwen didn't feel the need to debate with his friend. He did later write in response to that conversation that the real questions of God are "Can you let Adam lead you into prayer? Can you believe that I am in deep communion with Adam and that his life is a prayer? Can you let Adam  be a living prayer at your table? Can you see my face in the face of Adam?"
     At the end of the book, Nouwen writes, "From a worldly perspective telling about our relationship makes no sense at all. But I, Henri, Adam's friend, decided to write it down. I didn't embellish it. I didn't soften or sweeten it. I tried to write it as simply and directly as I could. I am a witness of Adam's truth."
     It's a truth that many parents of  profoundly disabled children know, but find difficult to put into words without sounding sentimental. We're not superhuman. Our kids aren't angels. They're human beings made in the image of God, and we can recognize their gifts and offer ours in return if we choose to.