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


Anonymous said...

Thank you for this post Donna. Being a full-time caregiver to 2 sons with significant disabilities for more than 20 years (actually 23 years ago today my son Ben was born), I can relate to that invisibility. For many years I faded completely from view from everyone except my family and the school (and the school likely wished I was invisible!). Once I became involved with Community Living, that changed, but slowly and not necessarily easily. I remember in the early days of my involvement being at meetings with gov't folks and being introduced as a 'mom'. Got a smile and a nod and then I vanished! I used to joke that I had a 'cloak of invisibility' that rivaled anything the Klingons were ever able to develop. When I would speak I would take people by surprise, they had not realized I was still there. I soon realized that to be visible you had to be more than present, you had to be heard. I talk a lot more now!

I still fade in and out, between invisible caregiver and visible activist. I know that there is a 'me' beyond those 2 roles, but after all these years trying to figure that part out is still a work in progress. Raising, knowing and loving my boys has certainly changed me in very profound and positive ways. I am not who I was before I had kids and I am grateful for all that my boys have given me.

So, personally, I too look forward to becoming more visible to myself in 2011.

As far as supports to caregivers are concerned, I think the reason it is so hard to get these in place is because for the most part the caregivers are invisible. We need them (or as many of them as possible) to become both visible and heard. That remains a challenge for this movement, finding invisible people and then convincing them to throw off that cloak and start demanding what they and their children need and deserve. Here is hoping that 2011 can be the year we can succeed in that task!!

Happy New Year Donna!

The Caregivers' Living Room said...

Thank you for your thoughtful and honest reflections, Laurie. I agree with you 100% about the political challenge of making invisible caring (which is good!) visible in order to support it and recognize its worth to society.

Thank you for sharing your experience!

lesley said...

Hi Donna. I came across your blog from facebook, scanned down a few posts and found this one interesting. I never thought about how invisible I feel. And yes, just writing this makes me teary. I guess I am still deep in the trenches with care for my daughter. I am her single parent, she is full care in every way, as well as being nonverbal. And I work(RN) four evenings a week. I feel like I am just making it through these years. Sarah is 14.
There is nothing I do to make me more visible, I don't have the time, the energy or the financial resources. I am just so tired. So very tired.
But, for some reason, inside myself, I feel that things will lighten up in the future as Sarah grows older. I hope so. I am generally an optimistic person :)

And until then, I am going to think about ways to make ME more visible. Thankyou for your post!

Lesley (I usually add 'mom to Sarah' here, but I won't because I've got to start somewhere!)