"So many dreams at first seem impossible. And then they seem improbable. And then when we summon the will, they soon become inevitable."
~ Christopher Reeve

Monday, November 7, 2011

A Voice in the Wilderness

Following is a copy of my presenataion at the recent CACL Conference, part of multi-person session on supported decision making. As the above title implies, I was the sole person questoning how well this concept might actually work.

A good discussion followed in which some of concerns were discussed and explained. Some to my satisfaction and others less so. Such is life.

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, Canada's Ambassador to the United Nations at the time, to the effect that 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 primarily as a mother. A mother with a legal background, a mother who walks both in the field of disability and law, but a mother.

I've tried to read some of what Michael [Ed. Michael Bach - Vice President of CACL) and others have written on exactly how supported decision making would work. I say tried, not due to lack of interest, but simply due to lack of time. Because I found it fascinating. But, quite frankly, I also found some of it scary.

I was particularly struck by the response to a statement made by the Ontario Select Committee on Mental Health and Addictions' statement that the "right to autonomy must be balanced with the right to be well". Part of the response to that statement was that there is no recognized right to be well in domestic or international law.

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. After all, I listened to Dr. Condoluci speak yesterday of research showing that cross-culturally parents want their children to be healthy, happy and have longevity. I rest my case. For now anyway.

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 at this Conference demands and deserves) with the duty to protect where decision-making abilities are limited or where they are lacking needed supports or where 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. In fact, let me be the first to welcome you to the Province with what is likely the most archaic, restrictive guardianship system in the country. We 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 in 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 would love to see Nova Scotia move to something like British Columbia's Representation Agreement. I don't think it's perfect but it would be a huge step forward for us.

But as I said I approach the issue of supported decision making from the perspective of both a mother 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 children, is insulting and degrading to them. And on one level, I agree. It is.

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?

When it comes to legal issues, whether we are considering something like a defendant's right to represent themselves in court without a lawyer or when (if ever) a guardianship order might be appropriate, we really are talking about the same thing. Do we treat individuals with disabilities like everyone else? Do we accord them special privileges? Or do we place special burdens or restrictions on them?

And, more importantly, can those questions be answered, can both of the above examples be analyzed in a logically consistent way? Or is better to proceed haphazardly, with a whatever feels right approach?

For example, it might give us a warm and fuzzy feeling to state that every challenged person accused of a crime should be able to represent him or herself, if they so choose. Perhaps we can support their legal advocacy in some shape or form? The only problem, at least for me, is exactly what that support would look like.

Similarly, 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. More particularly, here, in this room, Nova Scotia's legal system. Which, at the moment ,is as it is. Not as we might like it to be in some idealized world.

And 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 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 him competent to enter into any contracts he wishes, what will happen if he 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 a transplant. Or whether brain surgery might be the right 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 in incompetent.  The courts speak of the right to ber 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 which implies a level of knowledge and understanding.

We all have and all will continue to make bad decisions on occasion. That's life. And as the parent of a two teenage girls I understand that, I know my kids make bad decisions. 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 if you're in a bad situation and you don't even realize it? Or you know you want out but you don't have any sense as to 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 she has 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 this is a good situation and she wants to be there. No matter how badly she might be being abused.

My concern - point blank, both as a mother and a lawyer - is vulnerability.

Now as I've said I've read a fair bit of the proposal, what this supported decision making would look like. And, also as I've said, I find part of it fascinating. But 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 every stretching that far. And I don't necessarily think it should.

Here's why - I have two teenage daughters and with my youngest I have great discussions about human rights and current events. And 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 the situation 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 go when, where and how they want 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 going back to 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) to provide the challenged person with the support they need.

One last thought, this time as a Mom. I am intimately familiar with one local case where, very shortly after a young man turned 19, he disappeared from home. Disappeared with a teenage girl his parents knew nothing about. Her family took him to DCS, helped him obtain social assistance and then the girl and the rest of her family (her mother and sister) moved into an apartment with this young man. Drugs were being dealt from the residence. The young man was being beat up repeatedly. And there was little to nothing the parents could do to help their son because he insisted that he wanted to stay there. Of course, he also told them that his girlfrind had said that he wasn't allowed to be talking to them.

I would like to think that this was an isolated case, a one-off. But I know it's not because Jean Coleman recently told me that she had heard of similar situations in this Province where our young adults are being targeted by other youth because they are seen as easy money, a free ride. Throw some hormones into the mix and what do you have?

I don't have all (or many) of the answers for these issues. I do know there's an expression about shooting for the moon so you will land among the stars and  I have to wonder if, perhaps, this is what will happen here with supported decision making. Because to me it's definitely a proposal that shoots for the moon.

I apologize if I've offended anybody in the room. That is most definitely not my intent. I am just a mother and a lawyer trying to work my way through a world that is so far from ideal that I can't even see the ideal from here. But I realzie that just because I can't see it yet doesn't mean it doesn't exist. Maybe I just need some help finding my way there. But it's a long, long way from Nova Scotia.
I'm hoping to be able to feed you bits of the Conference this way a little at the time. Wish me luck!

4 comments:

doorkeeper said...

Excellent!! Some badly needed common sense, and an elegant presentation, very balanced and well written. Kudos!

Eileen B. said...

I found this to be an excellent read. You are certainly a service to others and the fact that you are a mother and a lawyer gives you so much credibility. The fact that you are willing to share your experiences and point out the loop-holes in supported decision making without destroying the concept, in fact approving of it, makes your opinion very important. Congratulations.

Shirley said...

Brilliant!

MMC said...

Thank you, ladies! Your comments mean a lot to me.

I must say I was very nervous in wordsmithing the presentation because I was very concerned about offending any self-advocates in the room. I have inadvertently did that in a simple one on one conversation on a different topic in the past and was not anxious to repeat that experience. I mean if I was a self-advocate and heard what you just read, I don't think I would be too impressed!

But I think it needed to be said and given the feedback I got from some at the Conference, I believe it was appreciated. It will certainly be interesting to see how it all plays out. Meanwhile, my high-functioning and yet so niave and vulnerable daughter will officially be considered a (competent) adult in less than five months ... yikes!