Monday, 22 October 2012

The Right to Give Care to Someone You Love




Recently, I spoke on the telephone with another writer who six months ago, lost her beloved mother to cancer.   Christabel Shaler writes a blog called The Ethical Hustler for the Vancouver Observer and here is how she described her mother in one of her posts there:

We grew up in a basement suite beneath beautiful houses and massive chestnut trees. Our clothes came from thrift stores and our car was a rusted Datsun.
My mother worked long hours and saved up for trips to museums, opera tickets, piano lessons and art classes. She told me that I could do anything.
Our luxuries were our creativity, comedy and imagination. My brother was a comedian and I built forts out of couch cushions while dressed as Cindy Lauper. Sometimes my mother's laughter overflowed and tears of joy would smudge her mascara. 
There were many times when we struggled, but my mother kept telling me that I could do anything. Despite thin finances, I got through university.
One month before my university graduation in October 2008, a doctor explained to us that my mother had cancer spreading throughout her bones.The room turned inside out. I had always thought that my mother's bones were made of steel. These bones had held our family together. 
Christabel is an old soul in a young person's body.  Her Mum passed away six months ago after a long, often difficult and sometimes profoundly joyful palliative period.  Christabel has many wise words, but something that she said in particular, stopped me in my tracks.
"I believe that I had the right to care for my dying mother."  
I was taken aback by that statement because so often we think of the rights of patients.  It's not often that policymakers or health care workers, much less family members think of the 'right to give care'.  In my book, The Four Walls of My Freedom, I talked about the right to give care this way:
Eva Feder Kittay coined the word ‘doulia’ to describe a new paradigm for reciprocity for caregivers in the community.  She describes ‘doulia’ as an ethical principle that recognizes giving care as an important contribution to the overall good of society.  “We can ask whether parents or kin who assume the role of caregiver should have claims on the larger society to support them in their efforts to provide care.  If, for all the effort and care in raising a child with disabilities into adulthood, there is no payback (conventionally understood) to the society at large, can we still insist that there be a state interest in helping families with the additional burdens of caring for a developmentally disabled child?  Is there a state interest in assuring families that their vulnerable child will be well cared for when the family is no longer able or willing to do so?”
  Kittay answers her own question with a resounding yes and that response is rooted firmly in her own mothering experience.  She describes a concept of interdependency or “nested dependencies” that recognizes the inevitability of dependency as a fact of being human.  It is via the idea of doulia that reciprocity can be realized through policy because the driving force is an equality that “our full functioning presumes our need for and ability to participate in relationships of dependency without sacrificing the needs of dependents or dependency workers.”

This afternoon, I am in Vancouver to speak about an online tool for coordinating the care of a vulnerable person who receives care at home - Tyze Support Networks.  Christabel Shaler will be here as well, talking about how she used Tyze to help care for her Mum.  I can't wait to meet Christabel. The first thing I'll do is give her a hug.  I know too, that she'll hug me back. 


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