Redraw Your Path

Dream Big About What Could Be | Ep. 033 - Franke James

• Lynn Debilzen • Episode 33

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Join host Lynn Debilzen in this touching interview with Author, Advocate, and Artist Franke James on Redraw Your Path!

In this interview, Lynn learns about Franke’s inspiring journey from being an artist and activist to becoming a fierce disability rights advocate for her sister Teresa. This episode is a powerful reminder that we have the strength to withstand and overcome obstacles. 

Their conversation touches on:

  • The importance of standing up for your values and doing what is right, but the fear of repercussions that can come from that
  • The meaning of family, and how values-based decisions sometimes need to come in the way of family relationships

Tune in for a dynamic discussion on life and growth!

About Franke:

‌“Nobody really knows what life will throw at them. And how they’ll change as a result,” says Franke James. She is an activist, an artist and an author. She’s fought City Hall to build a green driveway (and won); been blacklisted by the Canadian Government for her climate change art—and turned the government’s silencing into international news. Her latest book, Freeing Teresa: A True Story about My Sister and Me, is about choosing her sister’s freedom over her family. Franke helped her younger sister get out of a nursing home. Then all hell broke loose. They had to stand together—against their siblings, the medical system, and the police—to defend the right to be free.

Franke and her husband, Billiam James, helped Teresa regain her decision-making rights and get a public apology from the Ontario Minister of Health. Midwest Book Review said, "The result is more than a memoir: it’s a testimony to how ‘tickets to freedom’ are gained through fighting and love."

The memoir has won two Gold Awards from The Human Relations Indie Book Awards for Family Challenges and Special Needs and two Silver Awards for Leadership and Inspirational. In 2015, Franke won PEN Canada’s Ken Filkow Prize for her “tenacity in uncovering an abuse of power” and BCCLA’s Liberty Award for Excellence in the Arts in 2014.

For Franke, the diverse issues in her books, "Freeing Teresa," "Banned on the Hill," "Bothered by My Green Conscience," and "Dear Office-Politics" are all connected by the need to speak up and take action. She lives in Vancouver, BC, with her husband and her sister, Teresa.


Connect with Franke:
Website: https://freeingteresa.com/
Get her book: https://amzn.to/3SrB4T3
LinkedIn: https://www.linkedin.com/in/frankejames/
Find her on other socials:
https://www.instagram.com/franke.james/
https://mastodon.online/@frankejames
https://linktr.ee/frankejames
https://twitter.com/frankejames 

Connect with Teresa: teresaheartchild.com 

Connect with Lynn:

  • www.redrawyourpath.com
  • www.lynndebilzen.com
  • https://www.linkedin.com/in/lynndebilzen/
Lynn:

Hey friends, I'm Lynn Debilzen and welcome to Redraw Your Path, a podcast where I share stories of people who have made big changes in their lives and forged their own unique paths. I talk with guests about their moments of messiness, fear, and reframing on their way to where they are now. My goal is to inspire you about the shape your life could take. So let's get inspired. Hey friends, I'm so excited to drop another episode of Redraw Your Path with you. I had the pleasure of speaking with Franke James about her life trajectory, the path that she's taken, and how she has found herself as a disability rights advocate. I think you're really going to enjoy. Her story, for those of you who are passionate about human rights, I think it's going to really, be inspiring for you. So here's a little bit about Franke. Franke James is an activist, an artist, and an author. She has fought City Hall to build a green driveway and won, been blacklisted by the Canadian government for her climate change art, and turned the government's silencing into international news. Her latest book, Freeing Teresa, a true story about my sister and me, is about choosing her sister's freedom over her family. Franke helped her younger sister get out of a nursing home. Then all hell broke loose. They had to stand together against their siblings, the medical system, And the police to defend the right to be free. she lives in Vancouver, British Columbia they were able to secure a public apology from the Ontario minister of health. Her story is incredibly inspiring. I hope you, are able to take a lot away from it in terms of being able to create a life for yourself that really lives into your values. And when those values moments come up for you, are you taking the path that you would be proud to take? so I hope you enjoy her interview. Let me know what you think. I can't wait to hear from you. Welcome Franke James to Redraw Your Path. How are you today?

Franke:

Just great. Thank you so much for having me on.

Lynn:

Yeah, I'm so excited to hear your story, and I know it's come out in your many books, but, just to be able to talk with you is a pleasure. so can you share with listeners some context about where and how you grew up? I want to set the stage for folks.

Franke:

so I'm speaking mostly to U. S. listeners. I grew up in Toronto, Canadian city, in, in a family of, seven kids. And I went to private girl's school. Teresa went to the same school who we're going to be talking a lot about. Teresa went to the same school as me. And, my mother was really, A big proponent of positive thinking. So she was like, you can be whatever you want to be. And just really great that way.

Lynn:

That's amazing. And Teresa, just for listeners, is one of your multiple siblings, right? So you grew up in a family of how

Franke:

I have seven, seven kids and Teresa was the youngest.

Lynn:

Okay. And, Where were you in that seven?

Franke:

Number five.

Lynn:

Number five. Okay, so you were both on the younger side. were your parents married? Divorced?

Franke:

Oh, they were, they're married. They would, it's just it was what I thought was a happy family. And Teresa was, because she was born with Down syndrome, my mother was a big champion of Teresa's right from the start. And that was great to witness how she was helping Teresa to be the best she could be. And that had a huge influence on me.

Lynn:

Okay. That sounds really powerful to be able to see that. So it sounds like your mother's focus on positive thinking wasn't, it was a healthy focus on positivity, not that like toxic positivity or the positivity that is too much, right? Is that what I'm hearing?

Franke:

Yes, that's right.

Lynn:

Awesome. Okay, so you grew up one of seven, you were number five, Teresa, who we'll be talking about, was number seven, and she was born with Down syndrome. anything else you want to share about your childhood or about Toronto, the neighborhood you grew up in,

Franke:

I think the thing that's interesting was that each of, my mother identified talents in each of the seven kids. there was a sister that was good with math and one was good with music and I was the one that was good with art. So from an early age, I was identified as the artist, which I loved and is true to my self image. but interestingly, Art isn't just about pretty pictures. Art is about, communicating your ideas. And, that's what I find very interesting in the work I'm doing now.

Lynn:

Do you remember at what age you realized that art was about communicating your ideas?

Franke:

I don't think I realized that until I was in university, but I realized that I was an artist from the beginning, like my mother came in and spoke to the kindergarten teacher and they showed off my drawings and I was drawing. I was taking up one piece of paper and drawing a portrait of someone on one side and then flipping it over and drawing their backside on the other. Very interesting. Yeah.

Lynn:

so you were making, you were three dimensionalizing people already and making meaning out of it. that's really beautiful. Do you remember, so most of us grow up with some sort of external expectations or pressures placed on us? it sounds like you were identified as an artist early on, but what were some of those other expectations you had growing up?

Franke:

well, one of the expectations was that we would all study in Toronto. We would all stay close to the nest. And one of the first jobs that I had was at a public library. And I found a book on photorealist painters and, they, most of them studied at a place or worked at a place called Mount Allison in New Brunswick. So I actually read about the place and all these wonderful careers and artwork that these artists had done. And I wrote away to this university and I got a, their information about how to apply, and I applied. So I went away to university, and that broke the mold from the rest of my family. They were, they all stayed in Toronto, and I was one who ventured out and went to, university, in the East.

Lynn:

okay. Was that something that Do you remember your parents or your family being pretty upset about that? Or how did folks react?

Franke:

I think, my parents were very supportive. They thought that it was wonderful, but my siblings might have thought, what is she doing?

Lynn:

Oh,

Franke:

Why does she get this special treatment? But it didn't matter. I went and it was fabulous.

Lynn:

Okay. So it sounds like that expectation of stay close, kind of had the family is everything thread baked into it. Is that

Franke:

yes.

Lynn:

Okay. Okay. thank you. That's helpful just to have the context, the background, the expectations.

Franke:

And I should add, what did we do? We went hiking in the parks as kids. We made, oatmeal chewies at night and hot chocolate, and we went swimming. So we had a really fun life. It was a combination of, outdoor activity and studying at school and taking after school programs. It

Lynn:

It sounds almost like idyllic in some ways.

Franke:

was, it was, and that's why I got, I just got whacked over the head with, what happened later in life.

Lynn:

Yeah, definitely. And I'm really excited to dig into that a little bit more just to hear, how that family, comes back for you. so let's fast forward for folks. childhood you spent as growing up with this artist identity, you went away for college, you had this idea of Family is everything. And, where and how are you currently spending your days, Franke?

Franke:

my husband, Bill, and myself are in Vancouver, and, we live here with my sister, Teresa, and we live in downtown Vancouver in Gastown, and It's really beautiful. We can see the mountains and the Burrard Inlet every day and the Port of Vancouver. It's it's just wonderful. We should have moved here years ago.

Lynn:

Yeah. Oh, that's

Franke:

But, we were not compelled to until 2014. That story will come out.

Lynn:

Perfect. So you're, living in Vancouver, which by the way, I've never visited or never had the chance to visit Vancouver. And hopefully someday, with your husband, Bill, your sister, Teresa, and, you're an author, right?

Franke:

Yes. Yes, so four different books. my first book was Bothered by My Green Conscience. And, that was stories of, trying to go green and it's a graphic, format. It's very fun. And, then Dear Office- Politics. And, Banned on the Hill, and now Freeing Teresa.

Lynn:

Awesome, awesome. and I'm sure that West Coast Beauty and Vancouver Beauty provides a lot of really amazing inspiration for you. so I'd love to hear, okay, let's go back in time now. We have our bookends of how you grew up and where you're currently at. I'm curious, so you went away to college, you went to study art. I've talked to a lot of guests that had that kind of artist's itch, but their parents were often like, how are you going to make a career out of that? It sounds like that wasn't an issue that came up within your family.

Franke:

God bless my parents, I don't know why, but they were not, and they were very practical people, but they weren't worried about how I was going to make a living. They were just Go for it.

Lynn:

Yeah, that, that's awesome. That's really awesome to hear. so I'm curious. Okay, you studied art. where did your path go from there? And what was the first big way that you redrew your path?

Franke:

I went to, Mount Allison University in New Brunswick for my Bachelor of Fine Arts, and then I got a scholarship to, do my graduate program at University of Victoria. So my husband and I were newlyweds at that point, and we went out to Victoria, and it was lovely, it was fantastic. So I did my two years there, and We could have stayed, but I felt the pull of family. Backyard barbecues and my older sisters, having babies and having their own houses and I thought, oh, I really want to be back in Toronto. And so we moved back

Lynn:

Okay.

Franke:

it's a good thing in hindsight that we were there because we were able to help advocate for Teresa. But, our lives would have been very different if we hadn't moved back at that point.

Lynn:

Yeah, so that was, it sounds like if I do the math right, sometime in your 20s, you and Bill decided to move back to Toronto to be close to family and do all the fun family things, right? Be there for siblings and parents as they age, etc.

Franke:

yes, that's right.

Lynn:

All right. So how did that go for you? And I'm assuming you, built a career as an artist or something

Franke:

Yes, we have, we bought a house back in Toronto, and, we were very fortunate to be able to do that, and it was close by where my, parents and my, other siblings lived, and, we, built our business up, which was, Basically communications, advertising and design, educational stuff. And we had a lot of fun doing that. And my husband is a big runner and he was doing a lot of marathons. And I even picked up, doing triathlons at one point. And so that was very exciting. So my life in many ways was really blessed until I got, run over in 2013.

Lynn:

Yeah, let's talk about that. So I'm just trying to put together a timeline. So it must have been like many years that you spent building your, business and living this life where you're doing triathlons and he's running marathons and then what happened in 2013?

Franke:

Well, I'll just back up one little point. So in 2009, my first book was published and that was Bothered by My Green Conscience. And in that same year, I published Dear Office Politics. So two graphic style books and really, to me, that was very powerful to finally be an author and an artist. And I really love that. So in 2013, which is just a few years later, I discovered that, I was, first of all, I was offered an opportunity to tour my artwork in Europe, to have an art show. And I was like, wow, this is fantastic. This is like a, a dream of all artists that they're going to be offered a show and especially in Europe. And it was because of my book, Bothered by My Green Conscience, that I got this opportunity. So I was all set to, to show my art and then I discovered that the Canadian government, bureaucrats, and others were interfering and not wanting me to show my art abroad.

Lynn:

how did you find that out?

Franke:

The person who was organizing the show in Croatia, called me and said, you won't believe it, but this is what's happening behind the scenes, and we're believers in free expression. We just think this is terrible.

Lynn:

Ah, wow.

Franke:

so I thought, well, I think it's terrible too. I thought that I was allowed to basically say pretty much whatever I wanted, about, certainly about climate change and the environment, but the, the government. didn't like my art, and this was my first tip off, that they didn't like it, and they were going to influence people behind the scenes, not show my art, which is actually a very easy thing to do. You just have to pick up the phone or send an email. And, this type of, dissuasion happens. I thought, but how do I prove it? it's not proof that the woman from Croatia called me and that is going to be much proof that she's telling me this. So I thought, well, I have to, file freedom of information requests and get the government documents before I go to the press and tell them what's happening. And that's what I did. so I got. over 2, 000 documents all related to me from four different government departments, that detailed, what they were saying about my art and how they were interfering. And to, I've got to elevate this, make sure people really pay attention to this. So one of the things that I did was, do a, a billboard campaign on bus shelters. and I made a poster called Do Not Talk About Climate Change, and I used a statement from the Freedom of Information documents saying the artist's work deals mostly with climate change and is advocating against government policies. And that's the poster that I put up in, Ottawa, and Calgary, and Halifax, and eventually in Washington, D. C. too.

Lynn:

Oh, wow. Do you remember, do you have any idea how they, came across your artwork or how it became a topic of government conversation?

Franke:

they had taken notice of my, Essays, my visual essays. because at that point, it was a UN, meeting. I think it was COP 15 at that point. and, I publicized my, Visual essay, which was critical of the Alberta Tar Sands and how Canada was, aiming to be an energy superpower and use the sky as a sewer. So it's very critical. The, the artworks and the essays were very entertaining and fun and people would read them. And, Thomas Marr, one of the diplomats, I sent around a, an email, and now most of the email is redacted. And to this day, I still don't have it, but the subject line is not redacted. And the subject line was, Franke James is your fault?

Lynn:

Oh,

Franke:

Yes. can you imagine if they say, Lynn, it's your fault.

Lynn:

Yeah, so this isn't subtle, any sort of like subtle trying to quiet you at all.

Franke:

Yeah. so I, I got a lot of the stuff unredacted so I could see what they were saying and why they were objecting to my artwork. but that one I couldn't get unredacted.

Lynn:

Interesting. How did you start, like when you first heard that news, which was, that was in 2013, where you were trying, to

Franke:

I first heard the news that I was censored was in 2011. 2013 was the publication of Banned on the Hill, which is the story about being censored and that's what the book is.

Lynn:

okay. How did you start to think about yourself in that moment. like what was going through your head as you were just realizing, oh, okay, I've rocked the boat here a little, which I imagine was what you were trying to do, right? Like art is always trying to make a statement.

Franke:

Yes, it's not without fear. So one of the things that I do is I often call up a lot of different people, experts of different, in different ways. And I ask their opinion, what do you think I should do? Because everybody has an opinion on what the other person should do. And I called one activist in the U. S. and very prominent. And he said, that you should run towards a controversy. Boy, is that ever daunting. Do I want to do that? thought about it and I thought, he's really smart. That is right. Because if I run towards a controversy, it makes it more public. And more people will notice it and hear what the problem is. And that's what I did. I ran towards a controversy. So I did two, outdoor, art shows. On, the Canadian government silencing, Canadian, scientists and, environmental advocates who were speaking out about climate change. the first one I did was in 2011, and, I hosted a fundraising, blacklisting party to cheekily celebrate that I was blacklisted and raise money to fund it. And that was a big success. And then I wanted to put it all into a book, which I did, and then do another show, which would publicize the book and the whole story.

Lynn:

Okay.

Franke:

the background. And I know a lot of people would want to be quiet. Like I could have looked the other way and go, they kiboshed my show in Europe. I'm going to look the other way and just get on with my life. But I thought that it was really important that these bureaucrats were interfering in my self expression and dictating what I was allowed to say and not say. I wasn't going to, be quiet about it. I was going to publicize it and, see what people thought.

Lynn:

Yeah. And it sounds like you said the phrase, it wasn't without fear. Can you say more about that?

Franke:

I was scared, but the, one of the things I did was I called up a couple of lawyers and I said, do you think that I'll be sued if I speak out? And they said, nah, the government's not going to sue you. Just be sure that you don't mention anybody in particular.

Lynn:

Okay.

Franke:

That no individual, unless you've got absolute proof. And I did have proof, but anyway, generally, I haven't mentioned any particular people.

Lynn:

Okay. Okay. So there's that fear of being sued. Did you have fear for yourself or your family's safety too? Or did it not get it? That far. I know I tend to get paranoid. I'm like, Oh, I made a post that was controversial here. Somebody doesn't like It Oh,

Franke:

wasn't as hot. It wasn't nowhere near as hot as U. S. politics, I'll say. So I was not afraid for my safety at that point. I was just afraid that I was going to be stomped on and squished by the big bad government. And the government at that point was very right wing because Stephen Harper was the Prime Minister.

Lynn:

okay,

Franke:

It's more left leaning now with Trudeau. But it's a pendulum. Things may swing the other way.

Lynn:

yeah, always a pendulum, right? with you running towards the controversy, how did that play out or how did that lead to you redrawing your path in some way?

Franke:

So it was basically making lemonade out of lemons. It was just fabulous. I felt so proud of myself for having the courage to stand up and be public about it. And I won the BC Civil Liberties Award for free expression for all of Canada. And, they really loved that. I was getting the average person, to be aware of the importance of free expression. So that was great. And then I won the next year, I won Penn Canada's, Cantilco award, and that was for digging up information that the government, didn't want, public. And so that was very refreshing. It was really great, really strengthened me. and it was so important that I had that training. Because then the situation with Teresa hit the fan. And if I hadn't had that training, I wouldn't have known what to do.

Lynn:

Yeah, absolutely. It sounds like that helped you build your muscle around tolerating controversy or tolerating conflict. I'm curious. I have one question before I want to hear how, your sisterhood and fight for Teresa we helped you redraw your path the next time, but I'm curious, Franke, as you were going through life, and you were identified as an artist very early, and you studied, art, and then you became a published author with your books. Had you ever dealt with any sort of imposter syndrome or any sort of self-doubt? that came up with you along that journey? and if so, did winning the awards, did becoming the published author help you with any of those doubts?

Franke:

Oh, no. I mean, the thing is that I may have had doubts about, my ability as a writer, but. just getting in there and telling these stories and drawing pictures, of the stories to help people understand what was going on. it just felt right and good.

Lynn:

So it sounds like you were really living into your purpose and that felt right enough.

Franke:

I think so. And I think that, my mother taught me to be thankful for what you have. And you would think, be thankful for the talents that you have. And your ability to, to use them right now.

Lynn:

Yeah, that's really beautiful. so I'm curious, you said 2013 was a big year. how else did you redraw your path or what else came up during that year, that helped you or caused you to redraw your path?

Franke:

Right, well, 2013 was a big year. That was the year that my siblings decided that, they would put Teresa, my youngest sister, into a nursing home. And, I was just devastated. And the rationale was that my father was getting old, 91, and that he wouldn't be able to care for Teresa much longer, and that Teresa needed somewhere to live, and none of them wanted her to live at their houses. So, they came up with a solution of putting her into a nursing home. And, When I heard, I went, what? You can't do that. What about her human rights? she should be free. You're, you're writing off, decades of her life, putting her in a place with, this meant for people who are, sick and dying. But they didn't see it that way. They saw it as the government in Canada will pay for a person with an intellectual disability to be in a nursing home. care.

Lynn:

And were they, I'm assuming, was your mother passed away at that point?

Franke:

Yes. Sorry. she passed away in 99,

Lynn:

Okay, so Teresa had been,

Franke:

living with my father from 99. she was living with her all her life, but, so with my dad from 1999 to 2013.

Lynn:

okay. And how did this, do you know how this decision came about and why you weren't part of those conversations as one of the siblings?

Franke:

Ah, I had my, I had two of my sisters and their spouses over to dinner in August of, or July of 2013, and. I brought the topic up, and we talked about it, and I said, isn't, my brother Conrad, that's his pseudonym, isn't he going to take Teresa? Because that's what he promised, my father. And, my two sisters looked at me and said, Frank, are you crazy? Are you naive? There's no way that Conrad's going to take her. he just hasn't told Dad yet. And ultimately they were right that Conrad had changed his mind for his own reasons, which is fine, but I criticized him for not telling my dad because It would have given Dad an opportunity to make other plans, and me to make other plans for Teresa.

Lynn:

So what happened from there?

Franke:

so they were in this desperate, I call desperate mode, to find Teresa a place. And there were no group homes. There were thousands of people on the waiting list for group homes. And it was, thought to be easier to get Teresa into a nursing home. And, so the, now some of this stuff I wasn't aware of at the time, and I wasn't aware of until we got the health documents later. but when I spoke to my sister, Siobhan I'll call her, about Teresa going into a nursing home, and I said, you can't do that, she, she won't qualify. And Siobhan told me that she had already qualified. because they'd done a capacity test and found that she was not capable of making the decision to go into a nursing home herself. So they're going to make it for her and put her into a nursing home.

Lynn:

Wow. I imagine, what was Teresa going through or thinking about at that point? And was she part of any of the conversations?

Franke:

Well, there's a great phrase in the disability community, nothing about us without us. That was totally disregarded by my family,

Lynn:

Yeah.

Franke:

They, did not engage Teresa in the conversations about her own future.

Lynn:

Okay. Yeah.

Franke:

it was really a shame because Teresa did not want to go to a nursing home. She wanted to stay at the condo with my dad. And my dad and Teresa were very happy living at the condo. They thought of themselves as a team and they thought they had a long runway and they were getting, support people in to help them in whatever ways that they needed with their daily lives. And so this really just hit very hard. That, my siblings were planning to put both my dad and Teresa into different nursing homes.

Lynn:

Oh, so both of them, there was a plan. Okay.

Franke:

As one of my sisters in law called it the exit plan. And

Lynn:

oh gosh.

Franke:

and she said, do not tell dad about this exit plan. That will ruin everything. And I went, what? That, to me, I just felt so sick. That all of this was being orchestrated behind their backs because none of us would want to be puppets, would want to have our lives orchestrated by other people and our futures planned out for us without being shared with us.

Lynn:

Yeah, absolutely. Absolutely. so it sounds like that started to inspire you towards action. What,

Franke:

there was one, thing that I write about in the book called The Elephant and the Whiteboard, and, there was, I noticed that my, one of my older sisters, Deirdre, in the book, I call her that in the book, circulated, about six photos of Teresa's whiteboard, and she didn't say anything. She just sent these, photos around. And that raised my suspicion. I thought, why is Deirdre sending these photos of Teresa's whiteboard? How could this be a problem? And so I stepped forward with my husband and we defended Teresa's right to self expression. She can write whatever she wants on the whiteboards and draw whatever she wants. And this is good. It was in her own bedroom. But the rest of the family criticized Teresa. And said that, my, sister in law Candy said that it was disturbing, that Teresa was writing this stuff on her whiteboard. Now, I photographed The whiteboards myself and I've got them in the book and they're just, they're doodles and they're lists of important people in important places. It's not disturbing at all. it's how Teresa makes sense of the world. And to me, it's a beautiful thing. And so as an artist, this really got me. A giant red flag popped up and said, Whoa, something is going on. I don't like it. And I was on Teresa's side in a flash to see how I could defend her.

Lynn:

yeah. And what a violation of privacy in addition to the other violations happening.

Franke:

You know, I never thought about that. I guess that, I mean, it is Teresa's bedroom and what were they doing circulating photos of her artwork.

Lynn:

yeah, if I would find out someone took a photo of my, notebook or wherever

Franke:

Yes, and your private diary.

Lynn:

oh my gosh, I would flip. okay, like you, you were like, I'm on Teresa's side.

Franke:

I'm on Jesus side. And then, so I'm busy with my artwork, too, with different shows going on. And, so the conversation, the family conversations, quiets down for a little while. And then, We saw a campaign by the Canadian Down Syndrome Society. I was actually in Calgary with my husband and it was a wonderful campaign that said, see the ability and it showed a person with Down Syndrome and all the wonderful things that he was doing. he had a girlfriend, he had a job and he had Down Syndrome and he was having a great life. So when we came back to Toronto, we circulated that story and some other ones. with my siblings and, they just did not like that. They did not want to hear that. So I thought, okay, so I need to open their minds. We need to have a brainstorming session to think of all the wonderful things that Teresa can do with her life. So let's have a brainstorming session.

Lynn:

That's very noble of you. I appreciate the approach.

Franke:

So I'm trying to redirect their thinking and have them see the possibilities. I said the, this creative vision session would be three parts, create the vision of Teresa's best possible future, the hurdles to her getting to it, and an action plan to make it happen. And so we went through this and I got responses from everyone. And uniformly, all they could see was a nursing home as the best opportunity for Teresa. And I was shocked. I thought this is not what, Teresa's life should be. It just dead ended her life. Teresa could be anything. None of them would have wanted to be in a nursing home at the same age.

Lynn:

Had your family gotten any support or connections from the Down Syndrome Association or? anything like that. I'm assuming that, through her schooling age that there had been quite a bit of support.

Franke:

actually, the let me see, Community Living Ontario, and this was decades ago, this was in 1979, had Teresa and my parents in a documentary called Exploding the Myth. And it was because there was so much prejudice. Against people with developmental disabilities living in the community and just things that would really limit their opportunities in their lives that Community Living made this documentary and they featured Teresa as an example of someone who Sort of living this wonderful life with a happy family and being included in everything and going to a regular school. And I have that and it's featured in the book. It's a great example of how my parents were really championing, Teresa,

Lynn:

and

Franke:

champions of inclusion.

Lynn:

it sounds like when it came down to Teresa impeding on the independence or the lives of your siblings that belief didn't Trickle down to them.

Franke:

Yes, I thought that we had all grown up with the same values that Teresa deserved to have, the best possible life and for us to help her. Have the best possible life, but my other siblings, and this was a rude awakening where, I felt like I had gotten run over, that not all my siblings felt the same way I did, that some of them would rather that she was taken care of 24 seven in a nursing home instead of living her life.

Lynn:

Yeah. That must've been heartbreaking.

Franke:

It was. And I stepped forward for Teresa and helped her because I figured she is a vulnerable person and she needs help to assert her rights to live in the community. And my other siblings don't need that help. They can manage on their own. But Teresa needs me in her corner,

Lynn:

Absolutely. So how did you start to advocate for her or go to bat for her? in terms of helping her decide the destiny of her own life.

Franke:

Well, the change was swirling around us. And it was so confusing at this time. And I would say to any of your listeners that when you're going through times like this, that are just so confusing, the best thing to do is make a record. And that's what I decided to do. And I was making records through, video, photography, audio, any way that I could think of so that I could understand what was happening. Try to get some distance from it. and make sense of it. And I have on one side, I've got all my siblings. Thumbs up that they want Teresa in a nursing home. And me on the other side with my husband and my dad saying, no, we don't want Teresa in a nursing home. So I called up each of my siblings and I talked to them about it. Like, why do you want Teresa in a nursing home? And what's going to happen? And they're just awful. They're overcrowded, underfunded, and just places of last resort. And they gave me their reasons that they thought that it was best. And none of them made sense to me. Teresa did not need 24 7 care. She had no medical need to be in a long term care institution. And, as I said, it was a dead end for her life. the average life expectancy of someone in a long term care home is 2. 3 years. And that was before COVID.

Lynn:

yeah. And it sounded like Teresa was way too young even to

Franke:

yeah, Teresa was way too young. And I thought, I must be able to change their minds. Must be able to. How can I do that? Are they really going to do this? And I was in disbelief. that they were actually going to put Tristan in nursing home. I thought that I must be mistaken. They, that all the signals that I was getting were wrong. And that's why I was documenting it because to double check what was being said to me. And, and then I got on the phone with my sister Deirdre one night. Who had legal authority at that point over Teresa. And I said, but I am not in favor of Teresa going into a nursing home at all. I think that it would be terrible. And, my sister Deirdre said, you don't get a vote. And I went, what? I said, you don't get a vote. You're just gonna have to, visit her wherever she is and, walk farther. And she was making a little joke about the fact that I'm an environmentalist and we don't have a car. So I got off the phone and I ran downstairs and talked to Bill and I said, they are really going to do it. They're going to put Teresa into a nursing home and they're not going to tell me where, and they're not going to tell me until after it's done. And Bill and I sat down that night and said, this is the way we're going to fight back. We are going to offer to take Teresa because if we take her, then she will get off the crisis list. And the government will say that she doesn't belong there anymore because she has a family member who can take her. So we made this offer in writing and I really thought that it was going to involve everything. We were going to have Teresa living with us and she would be safe and the talk of the nursing home would end. And my siblings basically, they ignored my offer. And within days, Teresa was Taken out for a nice breakfast and put into a nursing home.

Lynn:

gosh.

Franke:

Yes,

Lynn:

That just hurts my heart so much.

Franke:

I was devastated and Teresa was shocked and crying. She wanted to go home to see dad. And my dad was furious that Teresa had been put in, but my siblings had done it. They'd gotten Teresa into the system and gotten her into a nursing home.

Lynn:

you gotten lawyers involved by that point at all? Or

Franke:

a few days before, I called a lawyer, a disability rights lawyer, to ask what Teresa's rights were as a person with a disability. And I was just about to meet with him when I got the email that said they put Teresa into the nursing home. And so things ramped up very quickly.

Lynn:

Yeah.

Franke:

started the conversation with this lawyer and said, how do we get her out? What rights do we have? And what rights does she have? And nobody had an easy solution. It's amazing how complicated it is to get someone out of a long term care institution if they've been put in. Now, what we didn't know and would have been helpful for us to know at that point was that. The nursing homes have no right of detention. So a psychiatric institution does, and they can hold people, but not a nursing home. So Teresa, was like Dorothy in The Wizard of Oz, could have clicked her heels and gotten out, but the person with Down syndrome, she would never have done that. She needed help. We didn't know at that point that she had the right to get out on her own. So we looked to my father. To help Teresa get out and, a few days later, I think it was about four days later, on November 30th, 2013, we picked my dad up, from his condo and we went down, to visit Teresa at the long term care home. And, we had gotten advice from a senior rights advocate, be polite, dress conservatively and record everything. So glad we were recording everything. I'm so glad we did. And one of the first things that, we did on seeing Teresa was we asked to see the admission papers. Now my dad was a retired lawyer, so very interested in seeing the admission papers. How did Teresa get admitted on what basis? And, so one of the documents that they had to file was the power of attorney, and my father was still listed as a senior power of attorney. So he was able to sign Therese out at least. And so we talked with the, CEO of the institution, we talked with the director of care, we talked with their lawyer, and hours later, and we talked with Teresa, of course, do you want to get out now that you're here? And she agreed that she did want to get out. And we managed to, grab her bags, which were not, unpacked yet. They were just in garbage bags, shopping bags, by her bed. And we took a cab and we left. And we went back to celebrate. And we were so happy. And my dad was so proud of us. And that was the first time in my life that I ever felt that my activism was of help to my dad and it was a really great feeling.

Lynn:

Wow, so left for good. can I ask just because I think listeners would probably wonder, what was the legality that Deidre had or? wasn't your dad the POA and the guardian?

Franke:

well we went back to my dad's condo to celebrate, and, he's a parent, right, so he had signed, the power of attorney for Teresa, as a senior power of attorney in 1995, but, anyway, so we went back to his condo, we were all celebrating this wonderful victory, and then the phone started

Lynn:

Oh no.

Franke:

and the threats from my siblings started. And they said, if you do not return Teresa, we're going to call the police.

Lynn:

Wow.

Franke:

There is no way that we are returning Teresa. this is just terrible thing that, that's happened. And, forget it. You can call the police, but we are not letting Teresa go. And it's a good thing that I was recording everything so we could look back and see what everyone said to explain what was happening. And, we ordered pizza and we, had dinner and we waited for the police to arrive. And, the, police arrived, but they, in a real, twist, they arrived to take my father. not Teresa. And I should say, back up just a little bit. In the space of time that we were waiting for the police, we had new powers of attorney written. you can revoke a power of attorney anytime and appoint new people. both my dad and Teresa wrote New Powers Attorney, appointing me as the attorney. Okay, so this was our protection and, it wasn't done with a lawyer, but it was done with the Attorney General forms and it was as good as we could get given the emergency circumstances. We had those in our back pocket when the police arrived. And, they said that my sister, Deirdre, had filed an affidavit or a, an allegation that my father was suicidal and they were going to take him to the, to the hospital to get him looked at by psychiatrists. And my father denied that he was suicidal, I denied that he was suicidal, Bill denied it. But it did not. The police took dad away.

Lynn:

So he was institutionalized that day also.

Franke:

Yes. Yes.

Lynn:

For how long?

Franke:

Well, he was there, just for a period of six or eight hours, and then the doctors let him go because he was not suicidal. And, my brother came out, of the, emergency room and, told us that they were releasing Dad, because if he was, deemed as suicidal then he wouldn't be allowed into the nursing home that they planned to put him in a few days later. So it foiled their plan, but it really scrambled my dad. And he did not like his memory of that day was wiped out. Because the drugs, the stress, it was just awful. And Teresa was with, was with me. She was at my side. And, she moved in to our home the next day. And she's lived with us, spoiler alert, she's lived with us ever since. So that's more than 11 years now.

Lynn:

two follow up questions to that. has your dad, he went back to living independently? and it's been a long time. I know you said he was 91 already at that point.

Franke:

Yeah, so he died in 2016.

Lynn:

Okay.

Franke:

But actually, a few days after, he came back to his condo, my siblings, twisted his arm, I would say, and got him to agree to go into a nursing home, but the nursing home turned out to be a lock up ward that he couldn't get out of.

Lynn:

oh my gosh,

Franke:

Yes.

Lynn:

how?

Franke:

so there was reports that he had dementia. Now, if you've ever dealt with people who have dementia, it's sort of sliding scale. certainly he was forgetful about some things, but he remembered who I was. he was on the ball in lots of ways, but not according to my siblings.

Lynn:

Okay. So Teresa was freed, but your dad had his own path redrawn through that process.

Franke:

unfortunately, we stayed in touch with him by giving him a phone and staying in communication with him that way. But. it was a very difficult period.

Lynn:

Yeah. Absolutely. I can imagine it must've been incredible stress and just incredible mixed emotions too, because you were probably so labergasted at your siblings and proud of what you had done, to support your sister and, a help her access her freedom, and just like anger also. and I imagine so many other feelings coming up during that time, but. It sounds like an incredibly stressful period and you ended up moving cross country too, so that was another redraw your path.

Franke:

yes. so what happened was that Teresa came to live with us on December 1st, 2013, and I started to plan, how can I make a wonderful life for Teresa? What do we have to do? what yoga classes, what teachers can we get in? And we thought that things were going to be okay. one of the things we did was I presented with Teresa. Her story to, the Ontario government who is having a, a tribunal sort of thing, so they were going all over the province and they were interviewing people who had stories about the developmental services system. And so Teresa's story was a perfect story to tell. What went wrong? Why was she being treated this way? Why was she in a nursing home when she didn't need to be, right? Why was it allowed? And, how had the system gone off the rails? So we presented that on January 21st, 2014. And that was very exciting and the, the members of parliament there were very receptive to hearing Teresa's story and they were sympathetic and they were shocked, but they were not operating at that tiny level. They were operating at a much higher level. basically, we got it on the record. But, they were writing their final report. Their final report, which came out in July of 2014, said that nursing homes are being pressured to accept people with developmental disabilities without any need for, any medical need and without any training by their staff. to have this happen. So it was basically what we were telling. And so it was nice vindication to have the government come forward and say, yes, this is happening.

Lynn:

That must have felt like, all This is a little, this is a little win here.

Franke:

This is a little win, but a little win. And, I had a, an engagement where I was presenting it in Washington, D. C. at that time on the environment. And we took Teresa down to, Washington, and we danced in front of the White House and have some photos of that. And it was just, it was wonderful. And I thought, we are really going to be able to do this. This is so good. Even though my siblings are currently not in favor, they will come around, but they didn't. And, then we got so much pushback, that was, contrary to, having Teresa live with that, really just. Terrible comments, that we realized that, we were in danger

Lynn:

Oh.

Franke:

that we had to pick up and leave. so we dropped everything, I'm getting a bit emotional. We flew to, Vancouver on March 1st, 2014. One way tickets, not knowing where we were going to go. Having a beautiful house back in Toronto, but not being able to live there.

Lynn:

Sounds like that was really hard.

Franke:

it was hard, but we also felt that, you know what, we're not going to live By my siblings rules. We're going to live by our own rules and what we value as being important. And we valued, Teresa and our happiness and doing what we wanted in life and we were going to redraw our path. So we went out to Vancouver and actually it's really turned out, we did it well. I know a lot of people that are listening can say, oh, I, Franke's so lucky she had the freedom to just pick up and leave. Well, we gave ourselves that freedom. we had flexible jobs and we could work from anywhere. And, we had a lovely house, but the house could be sold and we could get another house. And, so what was most important? It was Therese's happiness, and Our happiness in a safe place. And so I'm so glad that we moved to Vancouver and to British Columbia. And we have found so many supporters of community living for Teresa and for disability rights in BC. The whole way that, that, the legal system is structured in BC is different. In BC, a person like Teresa would have a representation agreement, so she can make supported decision makings. Whereas in Ontario, they have the old fashioned power of attorney, where decisions are made for you. And I also skipped over the point about Deirdre's, power of attorney. she said, and she told us, and showed us, that they'd had dad resign as the power of attorney and appoint them. And, It was hard to believe because Dad didn't know this had happened. We didn't know it happened, but this is what the document said. Unfortunately, we didn't know anything about that when we got Teresa out. The only thing on file was the power of attorney document for Teresa appointing my dad as the senior power of attorney.

Lynn:

yeah, that's really lucky that they had that document on file and it sounds like Seeing how systems can look because of your life you've built in British Columbia, that, that has helped almost give that purpose of advocacy and of sharing Teresa's story. is that right?

Franke:

Yes, and one thing that was fantastic, I mean, I was really committed to holding the government accountable because they have a government policy where you don't put young people with developmental disabilities into nursing homes. And somehow it had been allowed in Teresa's case. And so I was really putting their feet to the fire. And one thing that we did right away was on March 21st, 2014, Teresa went on change. org, she did a video and she told her story and asked the government to say sorry. And that was just beautiful. You see her walking along saying, I am female, I have Down syndrome and, I want to make my decision about where I live.

Lynn:

Wow.

Franke:

I'm so glad that we made that video that captured Teresa's voice at that time. And, over 25, 000 people signed the petition and we thought, oh, this is great. I'm always in awe. optimistic. Oh, this is great. The government is going to say sorry. And they could realize the big mistake that they made, but they didn't say sorry. And, that was really disappointing. Here we had 25, 000 signatures in this wonderful video by Teresa, and yet, We couldn't get them to say sorry for putting Truth into a new song. And so we had to campaign for another two years. And I finally went to, B. C. Civil Liberties and I asked them to write a letter and they did. And they wrote a letter to the Ontario government and the health minister, saying that Teresa's rights had been violated and that she never wanted to be in a nursing home. we got that letter signed by half a dozen disability rights organizations. And, it was sent off to the minister and then the press got ahold of it and they shone a spotlight on Teresa's story and on the letter. And that was so helpful. And they interviewed the minister, and they said, Really? What is a person like her doing in a long term care institution? And so the absurdity of it, and the fact that the, the government basically was, pushed into a corner on live TV, they ended up apologizing to Teresa.

Lynn:

Wow. That's powerful. Too late, but powerful.

Franke:

Well, did I mention that our book is a sequel? We have, two parts to it. So we've got, the first part, Fraying Teresa, which is about, the, the lead up and, rescuing Teresa. And then the second book is tentatively called Escape to Lotusland, which I've been telling you some of the highlights from.

Lynn:

Yeah. I'm excited for that sequel to come out. I'm curious. did you ever get any apologies from siblings or anything? Have they pretty much left you alone?

Franke:

no, we didn't get any apology and they have not, most of them haven't said congratulations for Teresa, for all the wonderful things that Teresa has done. achieved these past 11 years. She's published two books. She's won Canada Council grants. She's had art shows internationally. She's really done a lot creatively with her life. It's wonderful. And she's been named a champion for change. by the Human Rights Commissioner here in BC. So to me, this is all wonderful.

Lynn:

Yeah.

Franke:

I can hope that one day my siblings will decide to apologize, but it has not happened yet.

Lynn:

Yeah, don't hold your breath on that one, it sounds like.

Franke:

We have different worldviews, I think.

Lynn:

Yeah. Franke, I'm curious. You did share one big piece of advice around giving yourself that freedom to redraw your path. I'm curious if there is any other advice you would give to others who are considering redrawing their path or maybe forced into redrawing their path. Any advice you would share?

Franke:

I think that we sometimes we allow ourselves to get boxed into the life that we're living. And if we allow ourselves to dream big about the possibilities and allow ourselves to reimagine what could be, if we had the courage to take that step, then many things are possible. And we have to say, well, you know, I, I had a job. I had friends. I had a house in Toronto. I can't pick up and leave. why not? And, We gave ourselves that permission because we had something very important, Teresa's freedom to protect and our happiness.

Lynn:

I love that. Dream big about what could be. And why not? Why not redraw your path, and really step into your values, which is what you have done. I love that. Thank you so much for sharing your beautiful story. you've shared your books, and I will be including links in the show notes to those. where else can people find you?

Franke:

Well, pretty soon the audio book is going to be launched. Like I think within the next week, it's going to be available on Audible, and on other platforms. It's going to be so exciting. We have a full cast. narrating the book, and it really brings the story to life in dramatic ways.

Lynn:

Awesome. I can't wait for that. And, I'll include the link to that too, because it will be out by the time this episode airs. thank you so much for sharing your story and Teresa's story on Redraw Your Path, Franke.

Franke:

Well, thank you, Lynn, for having me on, and thank you to all the listeners for listening to this, and I hope that, that you can really redraw your path.

Lynn:

Great. Awesome. Thank you. Thanks for listening to Redraw Your Path with me, Lynn Debilzen. If you like the episode, please rate and review. That helps more listeners find me. And don't be shy, reach out and connect with me on LinkedIn and sign up for my e-newsletter at redrawyourpath.com. I can't wait to share more inspiring stories with you. See you next week.