Sunday, 2 January 2011

My colleague Al Etmanski at the PLAN movement in Canada asked me if I would submit a reflection to his blog for New Year. He asked every person whom he had referenced over 2010 and an amazing 58 responded. The question Al posed was, "What is it that you would like to see more visible in 2011?" Here is my response. You can read others' responses at Al's blog.

Recently, my husband and I went to a London theatre to see a musical comedy version of H.G. Wells’ story, “The Invisible Man”. As I gasped at the illusions and laughed at the double entendres, I felt a sense of unease. Here was a man who, as the result of an experiment gone awry, became an outcast by virtue of his invisibility. As his cries of anguish grew louder and his expressions of existential vengeance ever more daring, I admired the stagecraft, but felt sorry for the protagonist.

For I know what it is to be invisible. If there is no hope of reprieve from such a state, it is not pleasant. What do I hope will be more visible in 2011? Me. I hope to be more visible – to myself, to my family, to my friends and to anyone who cares to look at me.

I am a mother of a 22 year old young man with severe disabilities and complex health care needs. My son Nicholas is smart, funny, charming and optimistic. I have written at length about my son’s talents and contributions but here, I would like to reflect on what Eva Feder Kittay calls “The Transparent Self of the Dependency Worker”. This invisible person (often a mother) is described by Kittay as “a self through whom the needs of another are discerned, a self that, when it looks to gauge its own needs, sees first the needs of another.”
[1] Feminists will recoil at such a servile description of caring. But in the world of love, families and vulnerability, it is a necessary given.

Kittay looks hard at the physical assistance that we offer others and calls it dependency work. My son requires twenty-four hour a day dependency care and for eighteen years of his life, I managed to perform it with relatively little assistance. I felt what he felt, thought what he thought, and I made it my job to broker his relationship with teachers, doctors, nurses and playmates.

Caring well for a person with profound disabilities, especially someone who does not have spoken language requires the carer to sublimate her ego, her interests and much of herself. My point here is not that this form of invisibility is in itself a bad thing. Mothers love their children and want to take good care of them. Rather, I want to point out that apart from rendering the carer vulnerable to exploitation, having some opportunity for the expression of selfhood is a critical element of wellbeing for anyone. What is bad about transparent caring is if there is no hope of reprieve. For the past four years, my role with Nicholas has changed from dependency worker to natural mother. I have written a book called “The Four Walls of My Freedom” that allowed me to voice my ideas, experience and suggestions for policymakers. But I still catch myself wondering how I really feel about this or that. I am working hard to reconnect with myself.

In 2011, I hope that the inevitability of human interdependence will reveal itself, allowing more carers in Canada and around the world to receive the community supports they require to become visible to themselves, their families, their communities and their countries.
[1] Kittay, Eva Feder “Love’s Labor”, Routledge, New York and London, 1999, Pg. 51
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