Long, long ago in a galaxy far, far away (in other words, before I had a child with a disability), I was involved with grassroots political lobbying for children in third world countries. Doing that work, I became very attached to a quote from Stephen Lewis, then Canada's Ambassador to the United Nations, to the effect that eventually the day would come would societies would be judged not by their industrial or economic output, but by how they treated their most vulnerable citizens.
I approach the issue of supported decision making as both a parent and a disability lawyer. I've read a fair bit of what Michael Bach, (Vice President of the CACL) and others have written on exactly how supported decision making would work. I found it fascinating. But, quite frankly, I also found some of it quite scary.
I was particularly struck by a response given to a statement made by the Ontario Select Committee on Mental Health and Addictions that the "right to autonomy must be balanced with the right to be well". Part of CACL's response to that statement was that there is no recognized right to be well in domestic or international law.
Is this the path we want to go down? Really?
At any rate, I beg to differ - Section 7 of the Canadian Charter of Rights and Freedoms guarantees all of us the right to "life, liberty and security of the person". I would have no trouble arguing that that includes a right to be well. I recall listening to an amazing presentation by Dr. Condoluci at a CACL Conference a few years back, where he spoke of research showing that cross-culturally parents want their children to be healthy, happy and have longevity. I rest my case. For now anyway.
Please understand. I love the concept of supported decision making. In the abstract. But my concern is exactly how we are to balance the right to autonomy (that you, I and everyone else demands and deserves) with the duty to protect where decision-making abilities are limited, needed supports are lacking or people are vulnerable to abuse or neglect.
I am the first to admit that there are huge problems with the other substitute decision making options available, particularly guardianship. You might just have been living under a rock if you haven't come to realize over the course of the last several months that Nova Scotia has what is likely the most archaic, restrictive guardianship system in the country.
Sadly, we currently have a system that labels individuals as competent or incompetent without recognizing that people can be competent in some matters and less so in others. It's a very blunt instrument that doesn't allow for supported decision making and reinforces the perception that people with intellectual disabilities don't have capacity. It's a winner take all, one size most definitely doesn't fit all, take it or leave it kind of system. Frankly, it leaves a LOT to be desired. I am happy to say that, fortunately, that should soon change ("soon" being a relative term, of course).
As I said, I approach the issue of supported decision making from the perspective of both a parent and a lawyer. And the real question for me is whether and how much it is acceptable for society to act to protect individuals with intellectual disabilities.
Although not so many years ago that would have been hailed as a lofty goal, it has fallen into disrepute recently. As if attempts to protect those with intellectual disabilities, much as we might attempt to protect our minor children, are insulting and degrading to them. And on one level, I agree. They are.
But as off-putting as the idea of protecting a person with a disability from both themselves and others, so to speak, can be, I have to think that it does have a valid place in certain contexts and circumstances. Admittedly, in an ideal world, such would not be necessary. But who amongst us would argue that we live in an ideal world?
It's nice and heart-warming to opine that nobody should be subject to a guardianship order, to have their rights taken away in such a manner. Much better the route of supporting them as opposed to doing for or to them. Again, I agree. In an ideal world.
The problem is that what might sound good, or even feel good, as an approach must always be tested against real world conditions. In this case, we're talking about the reality of the legal system.
In the real world people over the age of majority who are considered competent are free to handle their own affairs as they see fit. To enter into contracts (in which they consent to have binding legal obligations placed upon them). To spend their money as they see fit. And they also have certain responsibilities, like ensuring they have a decent place to live and food to eat, just as a start. And correspondingly, they are expected to keep their part of the bargain and be responsible for any contracts they enter into.
Consider the person with intellectual disabilities in this world.
How feasible is it to support their decision making every step of the way? How agreeable might that person be to having someone else suggest how they might spend their money so as to be more responsible? And exactly who is it that will be on the hook if the individual with disabilities enters into a contract in which he is unable to keep his part of the bargain ie) pay the bill? And if we presume her competent to enter into any contracts she wishes, what will happen if she makes what any one of us would consider a very obvious bad bargain, when he or she is taken advantage of by the unscrupulous among us?
Remember, you can't have it both ways. If a person is competent to make all the daily decisions that you and I do, they must be held responsible for all the choices they make, just as you and I are.
Putting aside contracts, the real world is a place where some people are more than capable of understanding medical information well enough so they can decide whether or not to take a cold medication. But they may not be able to understand medical information well enough to decide whether to have an organ transplant. Or to balance the risk and benefits inherent in brain surgery so as to make an informed decision as to whether this might be an appropriate treatment option for them as a way to control their seizures. Or even to weigh and balance the possible side effects when it comes to changing a medication.
The courts realize that the assessment of mental capacity is based less on the content of the decision that's actually made than the process in arriving at the decision. We are also told that (and I'm sure you would agree - I know I do, at least up to a point) the fact that others might view a decision as foolish or ill-advised doesn't mean a person is incompetent. The courts speak of the right to be KNOWINGLY foolish and the right to VOLUNTARILY assume risks; some case law speaks of the right to live life on the edge, which is all well and good. But, for me, the key words are KNOWINGLY and VOLUNTARILY because that implies a level of choice that implies a level of knowledge and understanding.
We all have and will continue to make bad decisions on occasion. That's life. And as the parent of two young adults, I understand that, I know and accept that my daughters have and will continue to make bad decisions at tunes. But there is a big difference between making a bad decision and making a BAAAAD decision. And it's one thing to realize that your decision has put you in a bad situation, that this is not where you want to be and then deciding whether and how (including what help you might need) you will get yourself out of that situation.
But what about the person who is in a bad situation and doesn't even realize it? A situation that you or I or anyone else might objectively realize is abusive, but they can't see that? Or they know they want out, but have absolutely no clue what step one might be to accomplishing that?
I think of my oldest daughter and I know that she could easily find herself in a very bad situation (due to decisions freely and voluntarily made) and not even necessarily realize it. Or the person who is with her, who has perhaps been instrumental in putting her in that very bad situation, could easily convince her that all is well and she wants to stay there. No matter how badly she might be being abused. In all honesty, tell her that you love her and she will follow you to the ends of the earth.
My concern - point blank, both as a parent and a lawyer - is vulnerability.
Now as I've said I've read a fair bit of the CACL proposal as to what this supported decision making would look like. And, also as I've said, I find part of it fascinating. But even if you can somehow get past the all too real issue of vulnerability (and no, personally, I can't and make no apologies for that fact), some of it (such as possibly putting a positive obligation on a third party to find or provide the necessary supports for a challenged person to enter into a contract or otherwise interact with a neurotypical person) - I simply cannot imagine the law ever stretching that far. And I don't necessarily think it should.
Here's why - as I said, I have two young adult daughters and with my youngest I have great discussions about human rights and current events. I try to explain to her that, yes, we all have certain rights BUT my rights have to end where they collide with your rights. And vice versa.
Let me explain - I think a lot of problems could be solved with with a liberal dose of common sense (said to be the least common sense of all). But if I take a situation in the news quite a few years back, that of the Muslim taxi driver faced with a person with a guide dog, a dog that the taxi driver's religion deems unclean, what happens? Who wins? What right is more important - the right to freedom of religion or the right of a person with a disability to move when, where and how they choose around the community? My personal solution might be for the taxi driver to get a second taxi there tout suite and offer the customer a substantial discount for the inconvenience, along with his profound apologies.
But, to come going back to the issue of supported decision making, I can't see the law ever evolving to the point where it would say that the right of the person with a disability trumps the right of our theoretical third party and force him or her to expend resources (be it time or money) or go against their own legitimately held religious beliefs to provide the challenged person with the support they need.
One last thought, this time as a mother. I have heard of more than one case of young disabled adults being targeted by other youth in our Province because they are seen as easy money, a free ride. If that other youth happens to be of the opposite sex, you can throw some hormones into the mix. Any thoughts on how that situation might unfold?
When it comes to guardianship, I think a really important piece of this puzzle is WHO the guardian is. As the parent or other family member of a person with a disability, who has worked all of that person’s life to foster independence, you either have their best interests at heart or you don’t. That's going to colour every decision you make; everything you do and everything you don't do. It's true enough that the outside word won't see that, but neither will the outside world be there to pick up the pieces should something go terribly wrong and you don't have guardianship.
* And yet, I'm not prepared to throw out the baby with the bath water when it comes to the idea of supported decision making. About six months after my husband and I were granted guardianship of our oldest daughter, it struck me - yes, we had guardianship (that insurance policy in the drawer, as I see it, that I hope and pray we will never need to use), but we were using supported decision making as we tried (and keep trying) to teach, model, show her how to make good decisions.
In my mind, these last two paragraphs are true examples of saving the best for last - in appropriate circumstances, with a guardianship order in the drawer as an insurance policy, there is nothing stopping you from using supported decision making and, hopefully, finding that elusive balance between independence and protection. You can truly give your family member the best of both worlds.