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.
Subscribe to: Post Comments (Atom)
I see resignation as giving up the will to fight, to find an answer, to defy the odds.ReplyDelete
Acceptance to me is the equivalent of comprehension, to understand the pros and cons and make an educated decision considering all the facts and factors. Why should anyone be resigned to a situation unless there is no hope? So Sophie has a health issue that must be dealt with. Are you resigned to the fact that so far you have found no answer and if so there is no point for you to keep looking for one? Or are you accepting the challenge to keep on looking until you find the answer?
We both know the answer to this question. Somewhere, in this great Universe of ours there is an answer to that mystery as there are to many others.
In my heart I hold the hope that you will find it and whatever is broken - there, I said it - would be whole again, as it once was.
All children who suffer are in some way or another, broken. Would it be acceptable to say that Sophie was broken through no fault of yours and that your heart was broken through no fault of hers because of her situation? For those who are heavily invested in semantics this would be a war cry.
But you are both whole in more ways than broken and that is what to me shows acceptance instead of resignation.
Wow, that's really weird that I just posted about broken dreams and here this is up on your blog! Very well put, Elizabeth.ReplyDelete
I think resignation and acceptance are entirely different things. I see resignation as to cast aside, to leave, to cancel. Acceptance is to embrace fully. Also, in it we see the truth clearly, and we can keep hope in such a beautiful full embrace, looking truth in the eye. When we accept we don't let a situation defeat us.
My son's brain never grew after the moment he was born. Literally, you can put your hands on his head and feel the gaps and curves that are not filled in and he still wears a baby-sized hat. So, yes, I would say that his brain is broken. But, like you say of Sophie, he is perfect. He is perfection, he is more whole than I can describe, and in such a mysterious way. I accept him and I still have hope that he'll be able to communicate with us someday, and if not, why, I love him no less. His life is beautiful, either way.
I like the word "surrender". I agree with Chris Tea. I personally have always made a distinction between the body...which is a physical system that has a design for correct functioning and which can be "broken" or malfunction...and the person, who is always perfect in whatever form...indeed "mysterious".ReplyDelete
You articulate it so beautifully in these words: "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."ReplyDelete
I don't believe it is ALWAYS one or the other, it is in fact, in the in between where many of us make our peace.
I would feel like an intruder and a fraud offering a comment here. For me, it would all be simply semantics. I have no idea how you walk between those buildings, balancing the weight of your daughter in your arms day after day.ReplyDelete
I say you have the right to define your daughter and your circumstances however you want. You and your family are the only ones with that right.
And "broken"? Aren't we all?
I don't think of Katie as broken, maybe wounded, but is that any different? I do think that there is a reason for her being the way she is, for her brain not working. It is a part of her journey and mine.ReplyDelete
What our society doesn't see is that our children could be any one of us. We think we are immune from disability because we came through birth and childhood intact but disability comes in many forms.
A year ago I had a young man as a patient, hit by a taxi while he was out jogging. He now has a brain injury. Another patient, in his late forties, out golfing with his buddies, fell out of the golf cart, drunk and hit his head, leaving him with a substantial head injury. I look at my own mother, her brain ravaged by TIAs and her joints ravaged by arthritis, she too is now disabled. My neighbor will die in a wheelchair, she has MS.
My point I think, is that our children are not special but merely a part of the continuum of the human condition. Our children are a part of society that reminds others that to be human is to be fragile and dependent sometimes.
I have wanted to find a L'Arche home in my area for sometime but had no luck. The other day I decided I might want to attend a Quaker meeting and when I googled Quaker meeting Edmonton, found L'Arche Shalom in my own city. Providence.
I love the word "moiling" I don't know if I've ever heard it before. I love hearing of yours.ReplyDelete
I too feel like an intruder because I don't know any of this. But it's okay to just listen, right?
Your writing is so strong and beautiful, the metaphor and your last paragraph blew me away.
We always try to set a broken bone. Sometimes it heals in a different position than we sought, and we accept it and go with it, no?ReplyDelete
This post is so beautiful. Years ago, our friends had a baby who became blind. We did not have children yet, but I remember what our friends said to us. They said:ReplyDelete
"Our children come to us, and we care for them as they are. We are the support and the guide, and our children simply are who they are, no more and no less."
I remember that to this day as I raise my own children.
I don't imagine myself on a tightrope, but my path also includes that building in the distance. I, too, refuse to head in that direction. Be it acceptance or resignation or surrender or whatever "address" that building has -- I have no interest in going there either.ReplyDelete
At the same time, I have to say that I don't consider my son to be "perfect" by any stretch of the imagination. For the record, I don't consider my other "typical" son perfect either. I sometimes see more clearly than I desire the imperfections, though it doesn't dimish my love for either one of them.
What an understanding you've won for yourself and Sophie. To live now, just as you are and still looking for more, strong and sometimes weak, alive to pleasure and to pain. A hard cable, but the only one there is.ReplyDelete
Every life is hard, some more than others. We're most fortunate who are not alone with our lives. I'm grateful for your good husband and loving children, who ground you and support you even as you give to them.
I don't know that I should weigh in on this. My youngest daughter was thought to have a very high probability of Downs Syndrome prior to birth. My husband and I wrestled with this for a few weeks while we waited for final tests. Because we believe in a Sovereign God, we believed that if He called upon us to raise a special needs child then He also provided everything that we needed. Not saying that it wouldn't be difficult. Our daughter was healthy.ReplyDelete
Instead it ended up being our middle son with a form of high functioning autism. Again, he has enough difficulty that we understand a lot more about plight of special needs children and family. However, he's still much better off than most.
I can understand how difficult this could be if we didn't have our faith. And I often wonder if I'd have the same faith if things were more difficult.
So it's a pattern . That I can't wait to read your incredible words in the morning, but so often need to revisit. And I am sometimes left without something to say.ReplyDelete
I do love that you live with such grace.
And I pray that if finds you wherever you are.
And I imagine that Sophie feels completely accepted by you, as she is, in the blurred lines between your existence.
I've been thinking about the concept of acceptance ever since I read some blog posts addressing this issue, and it lead me to ponder the difference between acceptance and resignation. It's tricky and it's close, but for me there is a difference in attitude. Acceptance for me means that I willingly consent and undertake something and involves a choice, while resignation implies that I give up because I'm too tired to continue to fight.ReplyDelete
As always, this post is so beautifully written. And I think Deb used the perfect word to describe you: 'grace'.
I found the original post on Hopeful Parents to be beautiful and inspiring. I once looked at my child as "broken" but those days are past. The idea that he is a message bringer to our world was inspiring to me.ReplyDelete
I'd like to ditto Claire and say that I often find myself with the phrase "embrace surrender" in my mind. For me, that means allowing life to take me where it will and trying to move along with it.
Great, thought-provoking post.
This is a post that needs reading more than once. So deep it is.ReplyDelete
To me our human feelings oscillate between that of resignation and acceptance (even tolerance gets a look-in) and neither is totally negative or positive. They both call to parts of our humanity that are dependent on how we feel at a particular time, how vulnerable or strong we are.
Many thanks for such a brave post.
Greetings from London.
A fascinating debate. Might 'accommodation' be a more useful word than either 'acceptance' or 'resignation'? It suggests a positive incorporation of a child's condition into the ongoing processes of the lives of all involved without implying either passivity or defeat.ReplyDelete
My son is high functioning autistic and we've definitely accommodated his condition within the structures of our day-to-day family life. By being neither passive nor defeated by his differences, we can benefit from those aspects of his behaviours that are creative, self-affirming, endearing alongside dealing with those that might cause difficulties and distress.
This seems to me a purely practical and realistic response to a situation outside our immediate control rather than anything deeply spiritual or philosophically profound!
this is so beautiful, elizabeth!ReplyDelete
i'm not sure where i am with this word broken. there is a way that i see this life as a place where we all struggle with how to hold our own brokenness (to varying degrees) and a way that i see us all as essentially whole. we are broken and we aren't. our children are broken and they're not.
this life is like that tight rope; our task is to, as you say, find the joy in living suspended between the buildings with the abyss below us, to feel grounded in the groundlessness.
Beautiful image, Elizabeth- swaying, suspended high between known reality, heaven closer than ground, that filmy, misty air that obscures the end points....feels like that more often than not.ReplyDelete
Brighter minds than mine can figure out the terminology- broken, fixed, resigned, accepting - sometimes I think all the words are true and more, but can't capture all those truths that we know but don't have the words to express. Maybe I love reading you because you use words to hint at unspoken reality.
One thing I do believe in is stubborn determination- the endurance to keep cutting a path through this tangle of reality, sadness, disappointment and joy.
I don't see resignation as a defeatist mindset but rather a step toward acceptance. Merriam Webster defines "resign" as such, to give (oneself) over without resistance.ReplyDelete
Giving rather than being beaten. Letting go of resistance can free oneself to accomplish greater things.
This is a very interesting post and discussion.ReplyDelete
I too think of resignation as simply putting up with something we can't change. Whereas I think of acceptance (or perhaps a less definitive state -- I don't think of acceptance as a one-time destination) involves creatively working with something the way it is and learning and growing in the process.
And yes, I think there is a wholeness that is inherent in every life, and larger than physical function. I don't mind the use of the word broken when it's confined to a physical or intellectual function -- but not to the person. And like another poster, I think all of us are broken, but without a visible disability it's easier to hide our broken parts.
I meant to add, that my perception of the two concepts are probably affected by the Hungarian equivalents of these two words. 'Acceptance' in Hungarian has the root to 'take' or to 'receive' (both transitive) while the root of resignation is an intransitive, reflexive verb which can be roughly translated as 'broken into'. There is a pronounced difference between the two concepts in Hungarian.ReplyDelete
Thank you for your comment - I'm so glad that you understood my rambling message. You have a gift for making me feel understood, and I appreciate your friendship so much.ReplyDelete
This is simply a beautiful posting. I keep coming back to it. XO
Elizabeth what a brilliant post and I see why Karen was so smitten with it.ReplyDelete
The inbetween world, is where the real world is.
Love Renee xoxo
I don't have the same kind of situation as you or most people who have commented here (regarding my kids) .... but as I read your post, I immediately identified with the quandary. I had something break in my life yrs ago - not a physical illness - but still very palpable. I have only very recently stopped trying to fix it. It's like losing an arm. I can't re-attach it, but I deeply miss it. They say that when people lose a limb, they still have feeling or ghosted sensation where that limb would be. A big part of all of this is to just let yourself be sad. It's hard. Very hard.ReplyDelete
I have no words, Elizabeth. Your posts touch me deeply. I hope that sometimes, most of the times, on that rope between buildings with the abyss below the two of you, you don't feel alone.ReplyDelete
I'm getting caught up with your blog. This is one of your most profound and beautiful posts. The photo you selected is such a perfect metaphor. I see it (or something like it) as the cover of your book.
Broken. It makes me think of Bob Dylan's song Everything is Broken.