Monday, September 13, 2010

'He was, simply, there, a part of us'



This weekend I read The Power of the Powerless by Christopher De Vinck.


The title drew my attention because I think our culture promotes a false sense of power – one that hides behind masks of competence and invulnerability.


De Vinck’s book is about the gifts he received from his brother Oliver, who had severe brain damage, was blind and lay on his back in bed until he died at age 32. “Oliver could do absolutely nothing except breathe, sleep, eat, and yet he was responsible for action, love, courage, insight,” De Vinck writes.


The book defies common logic about strength and weakness, ability and disability, and explains the value a person can hold for others, simply by being present, simply by ‘being.’ "Our room was separated from Oliver's room by a single wall," De Vinck writes. "Five inches of wood and plaster divided us from each other during the night. We breathed the same night air as Oliver did, listened to the same wind, and slowly, without our knowing, Oliver created a certain power around us which changed all our lives."


Here’s an excerpt from an op-ed piece by De Vinck that ran in the Wall St. Journal in 1985, and which formed the basis for the later book.


I grew up in the house where my brother was on his back in his bed for thirty-two years, in the same corner of his room, under the same window, beside the same yellow walls. He was blind, mute. His legs were twisted. He didn’t have the strength to lift his head or the intelligence to learn anything.


Oliver was born with severe brain damage which left him and his body in a permanent state of helplessness.


Today I am an English teacher, and each time I introduce my class to the play about Helen Keller, The Miracle Worker, I tell my students the story about Oliver.


One day, during my first year of teaching, I was trying to describe Oliver’s lack of response, how he had been spoon-fed every morsel he ever ate, how he never spoke. A boy in the last row raised his hand said, “Oh, Mr. de Vinck. You mean he was a vegetable.”


I stammered for a few seconds. My family and I fed Oliver. We changed his diapers, hung his clothes and bed linens on the basement line in winter, and spread them out white and clean to dry on the lawn in the summer. I always liked to watch the grasshoppers jump on the pillowcases.


We bathed Oliver, tickled his chest to make him laugh. Sometimes we left the radio on in his room. We pulled the shade down on the window over his bed in the morning to keep the sun from burning his tender skin. We listened to him laugh as we watched television downstairs. We listened to him rock his arms up and down to make the bed squeak. We listened to him cough in the middle of the night.


“Well, I guess you could call him a vegetable. I called him Oliver, my brother. You would have loved him.”


And later in his book De Vinck writes: “My brothers and sisters and I rarely discussed Oliver. He was, simply, there, a part of us...It is difficult to explain the hidden reality which is all around us. The poets know how to peel back what we see every day and expose that hidden beauty or truth.”

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10 comments:

This has made me cry this morning, Louise, after I dropped Sophie off at her new school -- an all special education campus. Too much emotion to go into, but thank you for this. Thank you.

Hi Elizabeth -- I felt like he was able to articulate the irreplaceable nature of his brother -- irrespective of disability. I think it's hard for some people to understand how much someone can contribute even when they have "failed" at society's markers of success. How much they can change others. I hope Sophie had a good day! Hugs xo

Beautiful I will have to pick up this book thanks for sharing.

Thank you for sharing. I am going to find a copy now.

The excerpt is very moving. The title is great too, I agree with you about the false sense of power, we like to think we are in control, or have some control, but it is frequently an illusion.

I read this just recently too -- his writing amplifies Oliver's power in the world...

Thanks Louise. What a great book. One of the reasons often given for termination of a pregnancy in which a child with disabilities is expected is that it would be unfair to other siblings to have a child with such burdens.

At one time, that might have sounded logical to me. Yet when I dared to search and explore, it is not at all what I found.

There is an annual conference for families with children with trisomy 13 and 18. The majority of the children are severely delayed and seldom live beyond puberty. Long after they pass, the siblings, often grown and parents themselves, continue to attend these conferences. The have a deep attachment to the children they see. I cannot help but reflect on the effect of the special sibling in their lives given that, even as grown-ups, and with their sibling long passed, they continue to attend.

Yes our children are miracles.....my younger was blessed with having an older brother who has " enriched" his life beyond imagination...there are angels among us....they live and breath....I thank myself everyday for the "hard work" that everyone has contributed to my sons life and brought him to where he is.....in life there is no luck.....only hard work ( benjamin franklin)