Awhile back a friend posted something on face book concerning a new book written by a father of a disabled son, The Boy in the Moon, written by Ian Brown. There are many books and stories out there about the trials and joys families face while dealing with their handicapped children, but this one struck a cord since the boy's name was Walker. I ordered it from Amazon and when it arrived I put it on a shelf and waited until I was done with school to spend some quality time reading it. I have to admit, though, once it was there starring me in the face, I had some anxiety about reading it. I wasn't sure which direction the writer was going to take and I also knew that just reading page after page with Walker's name on it would evoke some emotional responses to the text.
As I began reading the book, I was instantly struck by many similarities that the two Walkers shared, but there were also many differences. Like many parents of children, both disabled and abled, I couldn't help but compare their milestones and the affects. I felt like I was getting the chance to look into a crystal ball of sorts. Something that I have not been able to do with my Walker since there is no diagnosis. As the book developed, there was a camaraderie that I found with the writer. Not only was this camaraderie formed with the struggles, but also the search to really understand the point of Walker's life.It brought forth questions of our value to life, and what we as a society think is true value.
This spoke volumes to me, I struggle with these thoughts daily. One on hand, we have a society that gives us the message that disabled children are "angles among us" but on the other hand they are also considered a "burden" and ultimately are "expensive". How is a parent who is exhausted, financially drained, emotionally fragile and harboring deep rooted guilt issues suppposed to deduce the real affect?
When the author was contemplating this question he asked his wife (Walker's mother) how she felt:
"I don't know what Walker's value is to the world. I'm not sure that I agree that his lasting value is to have touched people. That his whole life has to be this fucking Gandhi thing, making people feel better about themselves. I don't think his life should only have value because he makes other people feel more contented with their own lives. I think his life should have value of its own."
Eventually after eleven years of struggle they put Walker into a group home. He returns to them ever ten days and as he settles into his new community the author sets out to see what alternatives they have for him after they are deceased.
He finds an alternative community for the disabled, and travels to France to learn more about its origins. There he stays with a home for a few days and learns a different approach to living with the disabled. In that community everyone is the same, from the guests (which we call clients here) to the staff, they all live together, eat together and are a family. It is religious based, but the author did not find it contemptuous.(since he labeled himself somewhat of an atheist)
One of the founding fathers of the community expresses:
"We're arrogant enough to believe that sentience is all that counts. It's not all that counts. A sequoia is not a sentient being. But they count. There is nothing more magnificent. It doesn't require me to think about it to be in awe of it. I don't want to minimize the difficulty of raising a handicapped child. It says something about the place we have reached as a society that doing so creates a serious handicap in these contexts. But it's just a mistake to think of them as lesser than. There's no lesser than. There's just different from. It isn't great minds that matter. It's great spirits too"
I can only hope this is true. As a parent, I want the best for my child regardless of his or her handicaps.