Saturday, January 2, 2010
On the wonderful website Speaking of Faith, I am listening to an interview of Jean Vanier, the founder of L'Arche, an organisation of communities made up of the developmentally disabled, caregivers and community members who live together. I am especially struck and moved by this wise man's use of the word brokenness to describe the people with whom he has worked for so many years.
The central countercultural message of L'Arche happens in the course of daily life in small communities. The suffering and "imperfect" bodies and minds of the "core members" of each community — people with mental and intellectual disabilities — are not treated as a problem to be solved. They are honored as a mystery of the human condition — the simple fact that some human beings have been and always will be born with brokenness that is physically rooted, visibly debilitating.
As many of you in the blogging/disabled community are aware, just last week a dialogue was "opened" once again on the website Hopeful Parents when one columnist took offense to the use of the word broken as a descriptor for a child with a disability. While many people commenting agreed with the post, many did not and eventually the comments deteriorated into vitriol and coarse language (and very off-topic), so much so that the comments were eventually turned off by the administrator. Over at Fighting Monsters with Rubber Swords, Robert Rummel-Hudson continued the "debate" with some very eloquent and sharp-witted words. I've been thinking about the concept of broken-ness in our children with developmental disabilities since and believe, really, that coming to terms with broken-ness is a deeply spiritual undertaking. When I began to listen to Mr. Vanier's thoughts I became even more aware of my own very strong feelings regarding it.
My friend and fellow blogger Jeneva at Busily Seeking...Continual Change recently made a comment on one of my posts completely unrelated to the debate about broken-ness but, I believe, relevant to any discussion about accepting, fighting for and attempting to fix our broken children. Here is what she said:
Is there a difference, do you think, between resignation and acceptance? I always think of acceptance in our cases as false, perhaps a form of false piety. Resignation seems a more appropriate term--but then, it also sounds a bit defeated. I don't want to be defeated by this. Is there a way to think about our situations without thinking of them as a battle?
I'm not sure where to go with all of these thoughts moiling about in my head. I have lived my life for the past fifteen years carrying Sophie, balancing the both of us on a tightrope, stretched between two very tall buildings. When I began the walk, I left the first building with my broken baby in my arms and took very, very shaky steps toward that second building which was clouded but for the end of the rope firmly anchored there. I paused at times and barely balanced; a wind came along and nearly blew me off and her out of my arms. I hung a few times by my toes and she hung below me, her fingers entwined in mine. But somehow, I always managed to right myself and continue on the path toward the other building. I think that other building might be the building of resignation or perhaps acceptance and when I reached that side my baby no longer needed to be fixed. She was perfect, in fact, just as she was, still in my arms, her soft curls in my face, her aquiline nose pointed outward. But you know what? Like Philippe Petit who walked between the Twin Towers many years ago, I have never stopped at that second building. In fact, I've turned around and turned back toward the first and found my life somewhere in between. And in that in-between I've been able to jump and leap quite joyfully most of the time, as has Sophie, despite the abyss that lies below us.