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.
“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.
“[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.
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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.
Started young with a sister with a disability, amazing mentors and a strong mother with a vision. Now a mother to two sons, one of whom has a disability, a midwife to many, and an activist with a mission to band together with families to joyfully pursue the good things in life. Genia’s a registered midwife, International Board Certified Lactation Consultant, MSc in Evidence-Based Health Care (student), Speaker, Presenter, Podcast host, and founder of Good Things in Life which offers resources, courses and networking opportunities for a community of parents with a shared vision of the good things in life for their children with disabilities.