#021 Audrey Cole: “Guardianship replaces the person.”

You can listen to this podcast episode on iTunes or Spotify

Guardianship is the most common legal method for making decisions on behalf of someone who is deemed incapable of managing important legal decisions on their own. Critics argue that this is a human rights violation and has negative consequences thought can and should be avoided.

Headshot of a smiling elder woman.

“Even voluntarily, it seems an unnatural thing, to literally give yourself away completely so that you are no longer relevant [in your own life] and that is what guardianship does and has always done.” ~ Audrey Cole 

Audrey Cole is an activist, educator and lecturer with deep roots in the Community Living movement. The birth of her son Ian energized her interests in human rights, values and ethics, the social well-being of disadvantaged people and the social roles and responsibilities of voluntary associations.   Known for her expertise on guardianship legislation and supported decision making and her work on genetic discrimination, she has written and spoken on these matters nationally and internationally. She was a member of the Ontario Attorney General’s Interim Advisory Committee on Substitute Decisions.  In 1997, she was invested in the Order of Ontario in recognition of her activism on behalf of people with disabilities.”

Many people with intellectual disabilities will need help to make important decisions in their lives. That only makes sense. Reaching out to the people in our lives for feedback and advice when we have big decisions to make is how we all operate.  

One might even suggest that some collaboration is a natural part of the process of decision making.  

Audrey Cole has been considering the issue of decision making for people with intellectual disabilities for decades. She first began contemplating the problems with guardianship when her son, Ian, was five years old. Audrey is approaching her 92nd birthday. I think it is fair to say that she may have been analyzing these issues longer than anyone.   

Audrey’s conclusion?  

“[Guardianship is] a life sentence. There is no way out. You are non-entity. You have no legal status.”  

“Surely, in a society that believes in equality, there shouldn’t be any place where I can replace you in your life. “ 

“Even voluntarily, it seems an unnatural thing, to literally give yourself away completely so that you are no longer relevant [in your own life] and that is what guardianship does and has always done.”  

Instead of total guardianship, Audrey encourages parents to become familiar with the idea of supported decision making.  

Supportive decision making brings a circle of people together to help someone to make decisions. The person with a disability is part of that circle.  

Big legal decisions are few in our lives. But if you take away one’s legal status is affects everything. Even mundane day-to-day decisions are no longer in the person’s control.  

Audrey’s Advice: you need to learn about everything you can because issues will come up that will affect your kids.  

Understand the significant issues. People with disabilities get a lot of lip service but not a lot of respect.  

Things have a changed a lot. We have a lot more than we had when Audrey’s son was born. But it isn’t enough! We have to come together in order to make a difference.  

Audrey and I spoke for two hours and our conversation expanded to include some of the many ways in which her expertise and legal acumen have influenced laws and the rights of people with disabilities.  

Unfortunately, we had some issues with the sound quality in the second half of the recording.  

I have included the entire recording here for those of you who are interested in her story and her perspective on the issue of supported decision making, the harms of guardianship and the need for parents to become informed and work together for positive change.  

Next week, you will hear from Michael Kendrick about guardianship and supported decision making. I look forward to seeing you there! 

Have thoughts on this issue? Leave a comment below! Let’s talk about the important issues.  

Audrey and I went on to talk for another hour or so about her experiences as a young mother, how she had to give up her career as an aviation technical illustrator, how she’s had a volunteer career improving the lives of Canadians with disabilities through legal amendments, teaching physicians about the family experience of disability and through her work on supported decision making. Unfortunately, we had some audio issues. The full conversation, with a little audio oddity, is available below.

Thanks for Listening! 
Resources & Links Mentioned: 

Human Rights Case Cole vs. Ontario (Health & Long Term Care) 

Canada Has Its Own History of Euthanasia – Policy Options: Public Forum For The Public Good 

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Special thanks to Audrey Cole for joining me this week. Join me next week when guest Michael Kendrick continues the discussion about the problems with guardianship and the alternative of supported decision making.

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4 thoughts on “#021 Audrey Cole: “Guardianship replaces the person.””

  1. What happens if your child cannot make any decisions of their own. I have been told in order for me to ensure my daughter gets what she needs I need to have legal guardianship over her. She cannot make decisions and I cannot make them for her as I am not considered her legal guardian even thought I am her mother.

    1. Hi Maureen,

      Thanks for commenting. In the podcast episode Audrey talks about just this issue!

      Basically, when someone is unable to make a decision or, cannot communicate their decisions, then under a supported decision making situation a small group of people who know the person very well would gather to consider what they believe the person would want in the situation. They would also consider what is in the person’s best interests.

      It differs from guardianship in a couple of ways. One difference is that under guardianship there is one person who makes all the decisions and so the possibility of problems (conflict of interest, changing priorities, etc.) is significant. Another difference is that guardianship means that the person loses ALL legal decision making status.

      With supported decision making, even if the person’s big legal decisions are effectively made on their behalf, they still retain their legal status. Most people, even people with very significant disabilities, can express preferences about daily decisions and even minor legal decisions. Who do they like being with? Do they like living where they are living? Under a supported decision making model, those preferences can be considered in legal decision making.

      I hope that helps answer your question. Next week’s episode is also on guardianship and supported decision making. I hope you’ll tune in!

  2. My daughter is 33 years old, has a great group of friends. Most of who, including herself, live in their own home with the support they need. They are quite capable of making their own decisions and knowing what they want. They need support to actually make these things happen. This is where the problems come. When I explain to companies like Bell, utilities etc. that my daughter wants say internet, she will be paying for it (with support) and wants the account in her name. She needs support to set it up, arrange for installment, etc. I used to be able to be the support decision maker for her, but that is not being recognized anymore. So these companies will no longer talk to me and having difficulty talking with Jenny as they don’t know how to ask the questions and some of the technicalities she doesn’t understand.
    I refuse to take away her rights through either guardianship or POW, But need to be recognized as a supported decision maker. This has been an on going issue for more than a decade. It is time to let people keep their rights to their decisions, but have the support to make it happen.

    1. Hi Bonita,

      I agree. We need to keep working for laws that allow for supported decision making!

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