I wrote the following story nearly 20 years ago when we were in the midst of a law reform campaign to establish Representation Agreements as a grass roots alternate to traditional adult guardianship. (see my previous post – Love in the Architecture) I had been asked to write what would have been a rather dry article about legal decision making and traditional conceptions of competence. I didn't.
What follows was first published in the Vancouver Sun and reprinted in publications around the world. I am posting in honour of ground breaking Representation Agreements finally having their status confirmed by the British Columbia Government.
Since this was written Liz has blazed through any limitations I or anyone else placed before her. She is a published poet, artist, art teacher among many pursuits and still gets a chuckle out of Wayne's World. Her world is still, "whole, green and alive with promise."
I am because we are
Elizabeth Amey Kelsey Etmanski, or Liz for short, can turn a dry history assignment on New France into a love story between an Indian princess and a coureur de bois faster than most Grade Nine students at Hugh Boyd High.
She dreams of being a rock guitarist, idolises Madonna, and can lip synch to most of the songs in Wayne’s World. She can be extravagant with her make-up, prefers anything lacy, particularly those black fishnet vests, and applies something called “white mud” to her face every evening.
Boys and romance are passions she shares with her best friend Rachelle and her sisters Catherine and Theressa.
We disagree on a number of matters – her Madonna dance moves, the state of her room, the frequency of her dish washing, and the need for her own phone. The latter seems an extravagance, since she has expropriated the portable one we already have, re-establishing her claim as she walks in the door. I may be off the hook, however, since she has just seen the perfect electric guitar. It’s bright red and costs “only $450, Dad.”
She earns the occasional detention, would rather watch a video than do homework, and has a wicked sense of humour, especially about my bald spot. Notwithstanding, she is an adornment to her dad’s life, equal in beauty and charm to both her younger and older sisters.
Yet there is a darkness already threatening a corner of her future. Not that Liz is aware, fortunately. She sees the world as Timothy Findley describes it, “whole and green and alive with promise.” The spectre sadly is all mine.
In four years she begins a high stakes game of chance. On her 19th birthday the law will silently confer the assumption of decision-making capability on Liz. It is a Pandora’s present.
The standards of decision-making capability in our society remain firmly rooted in a narrowly defined, highly overrated form of intellectual ability. In our province the legal test is your ability to demonstrate you understand the nature and effect of your decision.
Using that standard, Liz, who has Down syndrome, would most likely fail.
The utensils the law has to measure our worth have not changed significantly throughout this century. Neither has their intent. Verbal ability, proficiency of expression and abstract intellectual thinking remain the criteria for determining a person’s decision-making ability.
As long as our society continues to ignore other factors that contribute to decision-making, there is no equality in the assumption of capability; there is intellectual imperialism. IQ scores may have faded from use but their successors haven’t. The law has embraced them all.
We know, learn, and understand even when we cannot explain. We learn through self-awareness, through our relationships and through confronting the challenges of our environment. We can know emotionally, spiritually and intuitively. We can express ourselves through the medium of music, art, mathematics, relationships, and love. Our tears, laughter, smiles, and frowns reveal our trust, confidence, security, and wishes as surely as intellectual
Ask yourself how you have made some of the important decisions in your life. Marriage? Children? Change of career? New car? Can you honestly say you understood the consequences of your decisions all the time?
How often did you rationalise afterward? And how often did you make decisions alone, completely cut off from advice, consultation or influence of any kind? Is there really such a thing as independent decision-making?
Our insights into the varied, complex and different ways of knowing remain half-eaten, too strange and threatening to be digested by the law. Its teeth are clenched. Liz and her abilities are a forbidden delicacy.
As an adult Liz can anticipate the law ignoring her decision-making ability and ultimately usurping it. The law does not value her intuition, her compassion, her manner of expression, and her relationships.
As a father I am beset by burning questions. Which benign agents of society’s institutions will challenge Liz’s decisions? What choices and risks will they eliminate from her life under the guise of protection? How will the mask of caring prevent her initiation into life’s mysteries?
When the law demands the password of her, will it appreciate the determination that convinced the largest bookstore in North America to search for an hour for a book on signing which she didn’t know the title of? She knew it when she saw it.
Will it value her diplomatic skills, mature enough to find common ground even in irreconcilable positions? Will it honour her ability to assess emotions with uncanny accuracy and to read a room with more facility than any politician? Will it credit her storytelling, her humour, and her razor-sharp imitations of friends and family? Will it understand her motivation to plough through babysitting and leadership training courses even though she is just learning to read?
My daughter has a wisdom that eludes many of us. She understands her limitations and adjusts with patience and eagerness. She negotiates the complexities and inequities of her world with more ingenuity, courage and equanimity than she should have to. She offers, for all those willing to listen, a course in perfecting a life.
Yet, unlike her sisters, Liz is a candidate for exclusion.
No admittance. Access forbidden. Restricted. Off limits. Too risky. Vulnerable. Incompetence. Choices ignored. For your own good. Go directly to … a program, a service, a professional, an institution, a legal guardian. Become a client, not a citizen.
Our province, like many jurisdictions in North America, is currently reviewing its guardianship legislation. We need laws that recognise Liz’s talents and attitudes, including her ability to participate in caring, committed and trusting relationships. That’s really what keeps you and me safe and contributes to the quality of our decisions.
If that kind of brilliance were to shine on the darkened corner of Liz’s future, I know an Indian princess and a coureur de bois who would be pleased.
Post Script: Brilliance shone – thanks to determined citizens acting collectively.
Representation Agreements: Love in the Architecture(1)
Beautiful, wonderful and more. One of your absolute best world-changers, Al. Starting with changing me.
Hey, thanks for the blog article.Really looking forward to read more. Will read on…