Disability and Progress-February 8, 2024-"Freeing Teresa: A True Story about My Sister and Me"

[00:00:00] Speaker A: KPI. [00:00:58] Speaker B: And good evening. Thank you for joining disability and progress, where we bring you insights into ideas about and discussions on disability topics. My name is Sam. I'm the host of this show, and Charlene Doll is my PR and research woman. Hi, Charlene. [00:01:14] Speaker C: Good afternoon, or good evening, everybody. [00:01:16] Speaker B: Good whatever it is somewhere. It's evening somewhere. So just a couple of reminders. I want to remind you, if you want to be a part of our email list, you can email me at [email protected]. We love to hear from you. We like to hear any comments, questions, book ideas, subject ideas. So keep them coming. Thank you. We are loving to be back in the studio live and be playing new stuff. And this week we're with Frankie James, and Frankie's discussing her new book, Freeing Teresa, a true story about my sister and me. We're going to talk to her about that and all her advocating that she's doing and has done so. Good evening, Frankie. How are you? [00:02:09] Speaker A: Very much for having me on. [00:02:11] Speaker B: Oh, you're so welcome. I want to start out just a little bit by setting the stage so people can kind of get to know you and your family and Teresa. So I want to start out by, first of all, I just want to know a little bit about you. This is not your first rodeo. You started out writing and advocating before you were advocating for Teresa. And so I want to wonder, when did you get interested in advocating for change as an author and why did you start writing about it? [00:02:47] Speaker A: Well, it was about in 2006 that I started to wake up to climate change and I realized that people weren't paying any attention to it. [00:02:58] Speaker B: Yeah, amazing. [00:02:59] Speaker A: So I started to write, but I only really found that I was making people excited when I shared them stories of personal actions that I was taking on climate change, like selling our only car, building a green driveway, things like that. So my roots are as an environmental activist, and I've had a lot of fun in that area. But this was a whole new thing to be advocating for Teresa on disability rights, and it started in 2013. [00:03:41] Speaker B: And I'm sure, though, that the advocating for change as far as environment goes and stuff helped kind of with the understanding of some things that you had to do, certainly about being persistent and having your voice heard. [00:03:58] Speaker A: Yes. And it also taught me about freedom of information requests and how to submit them and the gold mine that you could find by persevering and getting government documents. [00:04:14] Speaker B: I'd like to get people just a little bit of knowledge about your family because you come from a fairly large family. And where do you fall in the family order? [00:04:28] Speaker A: Okay, well, there are seven kids and I'm number five. And Teresa is number. [00:04:32] Speaker B: Right. Right. And so your sister was. Teresa was the last one to be born. So you were the fifth one. Sometimes I expect like the oldest to be a little more outspoken and advocating for things, but you ended up being quite the advocate. So when your sister was born, it was discovered that she had down syndrome. Yes, yes. Talk a little bit about how your parents responded and how that affected them. [00:05:05] Speaker A: Well, I remember when my mom told me that Teresa had down syndrome. And she came to me one night shortly after Teresa was born in 1964. And first of all, she told me that Teresa had problems with her heart and that she might need surgery. And I was very upset at that. And then she told me that Teresa had Down syndrome and would not be like the rest of us. But they were still going to bring her home even though the doctors had told them that they should institutionalize Teresa. But my mother and father rejected that idea. They brought Teresa home and my mum was an incredible champion for Teresa. From the time that she was born, mum had Teresa working with a personal trainer. This is in 1964. [00:06:01] Speaker B: Wow. [00:06:02] Speaker A: Totally amazing. [00:06:04] Speaker B: And unheard of during that time. [00:06:07] Speaker A: That's right, yes. And mum did that because she realized that Teresa, as a person with down syndrome, would have poor muscle tone and coordination. So she wanted to work on that. And by the time Teresa was three or four, she could climb the gym ropes. It was unbelievable. And we have photographs and I just love that story. [00:06:29] Speaker B: Yeah, that is amazing. I'm not sure I could have done that at that age, even though I think that says a lot for your mom and that how much foresight she had in regards to wanting Teresa to be. Just to fit in, to be the best that she could be with all of you. [00:06:52] Speaker A: She was. And she said that they would treat Teresa like the rest of us and she would be showered with the same gifts that we all had. So mom was very much about equality. And I really learned a lot from her. And they managed to get Teresa into the same school that I went to. So Teresa was know regular school stream from the time kindergarten right through to graduation in high school. [00:07:27] Speaker C: So did your siblings. Obviously, you just talked about yourself, but do you think your other siblings understood the issue with the down syndrome in your sister? [00:07:42] Speaker A: I think that they did. Maybe it was because I was closer in age to Teresa that I went on errands with my mom. And I stood outside of the gym door when Teresa was screaming that she didn't want to do gym exercises. We're all different people. And I was really inspired by Teresa. In fact, when I was in about grade three or four, I did a speech at school showing Teresa's artwork, and that was a lot of fun. And she had drawn on the walls of her know, like, most people would sort of be maybe a little bit angry at their child for drawing on the walls. But my mom was very relaxed, and anyway, it was a wonderful story. [00:08:37] Speaker B: Yeah. Was there anything else, Charlene? [00:08:46] Speaker C: Not right now. [00:08:47] Speaker B: Okay. All right. Well, it just sounds like she had great dynamics with you guys, and she fit into the family kind of amazingly well. It sounds like you all worked around doing things with her and that growing up, it was just like you all had the same expectations and to be the best that you could be. [00:09:18] Speaker A: Yeah. And one other thing I would say is that my eldest sister, who I call Lynn in the book, came up with the idea of a calendar, and it was really an ingenious and creative idea. And the idea was that each of us in the family would pick one date a year to do something with Teresa, and it would be on her calendar. And this was a beautiful idea that got all of my siblings and their children involved in Teresa's life. And Bill and I took this as the inspiration to improve Teresa's fitness. So we really went overboard. Instead of doing something once a year, we decided to do it several times a month and give Teresa running shoes and help her go on the terry fox walk and the sick kids walk. And it was really fun. We really loved it. [00:10:18] Speaker B: And how did that go for her? [00:10:21] Speaker A: Teresa really loved the challenge. She went from not walking very much to being able to walk kilometers and really having fun participating in the terry fox and meek and walk events. [00:10:41] Speaker B: So as you all kind of entered adulthood, you kind of saw the death of your mom and many other changes, but you all started your own kind of families. And I'm curious to know how that change affected Teresa and what was her life like as a young adult? [00:11:04] Speaker A: Right. Well, my mom had a stroke in, I think it was 99. And that really changed things because mom had been dynamic go getter before that. And after the stroke, my dad brought my mum home. He would not put her in a nursing home. And he was just amazing. He really turned into a caregiver, and it was extraordinary to witness. He was hands on, and every little win that they had, every achievement was celebrated. It was very inspirational. But back to Teresa. He also was taking care of Teresa at the same time. And so he was taking care of both my mom and Teresa until 99. And then. Well, no, from 99 to she had a stroke in 83, and she died in 99. So from the time that she came home from the hospital, dad took care of her for about 16 years. 16 years. And Teresa was living with dad at that time. And then after mom passed away, they moved to a condo and they lived together and they loved it. And we used to have them over for dinner regularly, and they would go shopping together and do banking. And I thought they were a great team. And that's always what my dad said. [00:12:49] Speaker B: I want to give your dad here pause and give your dad a lot of credit, and I don't want to sell the male genes short, but I feel like it is, in my experience, less common to see guy caregivers. There certainly are out there, but I feel like your dad really rose to the occasion and really was interested in keeping the family together and keeping as much, quote, normalcy as there could be and making sure that you guys were together. That's kind of what I gathered from that, that he really was. [00:13:30] Speaker A: It was wonderful because my dad was a businessman, a lawyer, and when mom had the stroke, he just switched to being a full time caregiver. And he was so devoted to her. It was really extraordinary. And I remember when he would help my mom learn to walk again. So she was in a wheelchair, but she would get up and practice walking, and he would help her walk across the kitchen with his arms under her armpits. And it was just lovely. [00:14:05] Speaker B: This is a fascinating story, Frankie. I just wondered, at what point did you realize that things started becoming a concern about Teresa's life and living arrangements? And how did that come about? [00:14:25] Speaker A: Well, there were a lot of emails going back and forth in August of 2013, and my siblings were very concerned about what is going to happen to Teresa. Where will she live after my dad can no longer take care of her? And very soon, they raised the issue of a nursing home. And I thought that that was ridiculous. Teresa was only 49. She wasn't going to go into a nursing home. [00:14:59] Speaker B: Right. [00:15:00] Speaker A: But they didn't listen to me. So they went on a tour of a nursing home to see what it would be like for Teresa. And I refused to go because I thought that it was just an absurd idea that we would put Teresa into a nursing home. And I suggested options, such as, there is a program called Lights that will help families join together and help the person with the disability live in the community, in shared housing or whatever. I also did a say by November I was getting the idea that they were really going to go forward with this nurse company. How can I turn this around? How can I turn it around? And so I suggested that we have a brainstorming session by email. So we did. And the structure of it was to imagine Teresa's best possible future, what the hurdles were, and then do an action plan. And so with those three things, that's what my siblings were supposed to respond to. And they all came back with the idea that a nursing home was the best thing for Teresa's future. And I just couldn't believe it. I was so gobsmacked and worried at how things were turning. I just couldn't believe it. [00:16:47] Speaker B: And what was your father's response to all this? [00:16:52] Speaker A: He was kept out of the loop, and so was Teresa. And so the adage nothing about us without us was totally foreign to the way that my siblings were handling planning for Teresa. And they had some authority as power of attorney. Although my dad was senior power of attorney, they had some legal control. [00:17:24] Speaker B: I wonder at that time, you were doing a lot of traveling and advocating with the environment and things like that. And I know there was a discussions of, you need to go see the home. And you were really, like you said, arguing for the idea that Teresa could do so much better and could have much better quality of life and several other ideas. If you had to go back. [00:17:55] Speaker A: Do. [00:17:56] Speaker B: You think that if you would have gone early to see the homes, you would have had better grounds to argue, or do you think it would have been the same? [00:18:04] Speaker A: I think it would have been the same. I mean, there is no way that a nursing home is the appropriate for a person with down syndrome, someone who is young and active. There is no training by the staff. And why should Teresa live in a nursing home? It was a horrible idea. I'm sorry. [00:18:28] Speaker B: And what you know, I think you did quite a bit of research on other down syndrome adults that were doing much different things and have much different arrangements. Do you want to talk a little bit about what you discovered and what Canada's view was on this whole situation? [00:18:51] Speaker A: Yeah. Well, there was Jenny Hatch, who people in the United States probably know of Jenny Hatch, and she's a young woman with down syndrome who actually took it to court and fought her parents on the idea that she would go into a group home because Jenny didn't want to. She wanted to live independently in the. That's. She's just a champion for people with down syndrome. I think that's wonderful to see that she was fighting back for her right to live in the community. And what I saw for Teresa was that she had a right to live in the community, as all of us do, and that what my siblings were proposing by putting Teresa into a nursing home was something that they would never want for themselves. So why was it okay for Teresa? It seemed to me to be shortchanging her life and limiting her future. [00:20:09] Speaker B: I'm wondering how much, if you cared, how much had to do, because it sounds like your dad had tried to put in place some financial planning. So how much did this have to do with anything financial? [00:20:25] Speaker A: I think that money had a lot to do with it. The thing is that all my siblings were saying that dad didn't have enough money for Teresa to live in the community, but he actually had a house or a condo that was worth a lot of money. 500, 600,000. And the advantage, if there is an advantage to a nursing home in Canada is that everything is paid for by the government. [00:21:01] Speaker B: There is a free thing. [00:21:04] Speaker A: Yes. So that Teresa would have a roof over her head and food in her belly for the rest of her life for free, and none of it would have to be paid for by my dad. And I didn't think that it was fair to Teresa. I felt that she should be able to use to get support from my dad to live in the. [00:21:32] Speaker B: Anyway, when, at what point did you feel like the idea had gotten so out of control and talk a little bit about what happened? There's a great scene in the book where Teresa and your dad finally figure out what's going on and you actually have to take a stand. Do you want to discuss it? [00:22:00] Speaker A: Well, I'm not sure if it's in case of the same part, but what happened that really made me change my mind, because at first I was saying, oh, Teresa can live in a group home or she can live in the community through light. She can be supported. And I thought that was going to work. But when I really realized that my siblings were going to put Teresa into a nursing home was when I was speaking with my sister Deirdre. Now Deirdre is a pseudonym. And Deirdre told me that I had no power on the decision of whether they would put Teresa in a nursing home. And she wouldn't tell me where the nursing home was. And I got off the phone and I said to my husband, we need to do something to stop this. Just, this is horrible. And the only thing that we can do that will really stop it is if we offer to take Teresa. And then they will have to let Teresa stay with us, and she won't be put in the nursing home. And so I think it was on November 22 when we sent an offer in writing that we would take Teresa and she could stay and live in our house. And we expected that my siblings, you know, get down on their knees and say, oh, thank God. Yes, this is wonderful. Fantastic. But unfortunately, they didn't. We'd upset their plans, and they grew even more secretive over what they were doing. And I'm able to see on the health records that my sister Deirdre actually prevented me from speaking with the agencies, so they were warned not to speak with me. And on November 27, 2013, I got an email, and the email said, update on dad and Teresa. And it was my brother Conrad, a pseudonym, who was saying that they had gotten a call from the nursing home, and they had taken Teresa out for a nice breakfast and then dropped her off at this nursing home. [00:24:30] Speaker B: Right. [00:24:31] Speaker A: And I was devastated. I just could not believe that they had taken from. From dad. Dad didn't know anything that was going on. Teresa didn't know anything that was going on. And she was with strangers in this nursing home. And so I got on the phone and talked to my dad and talked to lawyers, too. And over the course of a few days, we came up with a plan to rescue Teresa from the nursing home. [00:25:10] Speaker B: Just stepping back a minute, I would have thought that when you would have told your siblings that that would have, like you said, been just such a godsend to them. What do you suppose that was that made them almost more headstrong to keep going on with their plans? [00:25:26] Speaker A: Well, I can't read their mind, so I can only think it could be a power issue that I'm one of the younger siblings, and why am I interfering in their perfectly good plan? And there was also the money that Teresa would need support if she lived in the community, and perhaps they didn't want that. In fact, it was seven years before they paid any support to Teresa. Oh, my gosh. [00:26:07] Speaker B: And at what point? Like your dad, once Teresa was in the nursing home, what was your dad's response? [00:26:15] Speaker A: He was devastated. He said that his life wasn't worth living anymore, and they had to bring Teresa back. And he was just so upset. And I said that I would help him and we would go down and get Teresa back. We went down to the nursing home, my husband and my father and me, and we spent hours and hours talking to the officials down there and reviewing the documents, trying to see if dad had the legal right to sign Teresa out. And finally, they gave us the admission papers, and we were able to see that dad did have the authority to take. And so we got her bags and we're rushing out the door, and all of a sudden we get a phone call. The nurse gets a phone call from my sister Deirdre, who asks us to stop and just wait for her to arrive. But we didn't stop. [00:27:37] Speaker B: Yeah, that was a run. Run fast. [00:27:41] Speaker A: As fast as you can. [00:27:45] Speaker B: Because it sounds like you were doing kind of a substantial amount of research. As far as other cases, how common is this for families to some family member to kind of take over and place a person with a disability or down syndrome or any other disability in a nursing home that maybe doesn't want to be there? Is it a common thing? [00:28:12] Speaker A: Well, I have done research and I've spoken with a number of sort of industry leaders, and they say that this happens all the time. What happened to Teresa? And most people don't talk about it, but we can see the statistics. There was a terrific news article in 2016 done by a lady named Christina Stevens, and she was the one who actually helped us to get an apology from the government. But Christina Stevens took the big picture and looked at the fact that there were 2900 people with disabilities, intellectual disabilities, in Ontario long term care homes. So that was in 2016. And then just recently, if you look on disability scoop, you'll see a number of nursing home related articles. And there was a report by disability rights New Jersey that was helping 2000 people with intellectual disabilities get out of nursing homes. There's a report about Florida, too. So it's really all over the place, but people are not talking about it. And I think of it as the quiet reinstitutionalization of people with disabilities in long term care homes. [00:29:43] Speaker B: And I just want to remind people, although people think of someone with an intellectual disability like you're talking about, it is like any other disability. It's like being visually impaired or totally blind. But one person may not have the same situation. So it is very probable that somebody with an intellectual disability can live independently or with a roommate that you've discussed, or with some kind of guardian, or with some assistance out. And not everybody is to the point where they need to be in a nursing home. I agree that the nursing home bit, I think is really difficult. I think group homes may be a better idea of that. You have several roommates, but like you said, a nursing home just is not a proper place for somebody young and somebody who has 30 years ahead of them to live in somewhere like that. [00:30:53] Speaker A: And we can see, with the COVID epidemic pandemic, that it would have been terrible if Teresa was in a nursing home, we wouldn't have seen her at all. And by her living with us, we all got COVID together, we all experienced, we all survived, and you could all. [00:31:15] Speaker B: Take care of each. I wonder, you know, we talked about your dad kind of had some financial planning for Teresa, and she had such a big family, even though they didn't take the part that you and your husband took. She's exceptionally lucky to have a sister like you, and I'm sure you feel just as lucky to have her. How hard is it financially for a person to be able to live out, not be institutionalized financially? In Canada. [00:32:01] Speaker A: It'S not hard at all because Teresa gets money from the government. Whatever provincial government you're in, you're going to get maybe 1000 or 1500 a month. So you're going to have money that's going to help you. And in the province that we live in now, British Columbia, they have a thing called home share. And home share is people would bring the person in and they would pay a certain amount of rent and the person would be supported to live in the community. So there are solutions like that that would work. But I think that in the majority of cases, people can live in the community. It just takes more effort, a little bit more personal effort. And it's also, the thing is that they've done studies and found that it's actually cheaper to have to support someone with a disability to live in the community than to live in a nursing home. But the fact is that we've got all of these nursing homes that maybe they are directing them to because they need the money. I don't know. [00:33:14] Speaker B: Right. I kind of would agree that it just seems kind of like an easy solution, that people don't think outside the box or really take the step, that if you just took one more step, you could have an easier way of things. [00:33:32] Speaker A: Yeah. And a nursing home is such a regimented life. They would have no freedom of what time they woke up, what they would eat. It's just no freedom to go outside. It was just not a good solution for Teresa. And the nice thing is that Teresa, by living with us, has really flourished. And so it's wonderful to see the things that she's done. You're probably going to ask about this. [00:34:08] Speaker B: I will. [00:34:10] Speaker A: Okay. [00:34:14] Speaker C: I'd like to talk about how someone would actually start to be an advocate if they really are interested, to help their loved one, but don't have those resources to understand it yet? [00:34:29] Speaker A: I think that's a great question. So the thing is that I would say, start documenting. If you see something unfolding and maybe you speak up and people aren't paying attention to you, don't let that faze you. Start making a document, whether it's audio recording or photographs or video or just notes, whatever, make a record of what is happening and what is unfolding, because that can be a great way to prove to the authorities, if they'll listen to you, what actually happened. And the other thing is find opportunities to get it on the record. So Teresa and I, after we got Teresa out, and that was November 30, 2013. On January 21, 2014, Teresa and I presented to the select committee on developmental services. So this was a whole committee. Unbelievable. So anyway, these members of parliament were really shocked at Teresa's story. They could see that Teresa was vibrant and active, and they couldn't fathom how this mistake had happened. But they were not intervening on an individual basis. They were on a much higher level. So what we see is that in July. So the committee meeting was in January. By July, they had a final report. And their final report said that people with young people with disabilities were finding themselves in nursing homes because the nursing homes were pressured to accept them without any medical need on the part of the person with a disability and without any training by their staff. And so we were pleased. Now, I was very pleased that we got it on the record. So it's part of the Hanson record that Teresa and I presented. And even though we didn't get actionable results from the committee, they didn't intervene in our case. It still was a record of what had happened. [00:37:08] Speaker B: Let's talk a little bit about how Teresa has flourished. What is she doing now? What's her life like? [00:37:15] Speaker A: Well, Teresa is, she's an artist and an author, and she's published two books. The first was in 2016. And it's called Pretty Amazing. I've got it right here. Let me see. I don't know if you can. It's called pretty amazing how I found myself in the Downtown east side. And it's full of her self talk poetry and drawings and just a wonderful, wonderful book. And then two years later, she did totally amazing. Free to be me, and that is full of self talk poetry and her own drawings. And it's just lovely. [00:38:04] Speaker B: Is she selling those books? [00:38:06] Speaker A: Yeah, they're on Amazon. [00:38:08] Speaker B: Excellent. [00:38:08] Speaker A: Anybody wants to look at, so. And also, she's been recognized by the Human rights commissioner here in BC as a champion for change. And she spoke up she did a petition on change on March 21, 2014, and asking for an apology from the government for putting her into the nursing home. And 26,000 people signed that petition. It was wonderful. And I thought that that was going to be enough to get an apology from the government, but it wasn't. It took us another two years and help from many, many people. So what I did, and this might be helpful to other people, I went to BC civil liberties, so I went to a civil liberties organization and I asked them to write a letter to the Ontario government complaining about Teresa being put into a nursing home. And also six different organizations that are disability organizations signed the letter. So we sent that letter off to the minister of health, and then we shared it with the press, and Christina Stevens, who I'd mentioned earlier, picked up on it, and she really helped. It was just tremendous. She interviewed the minister of health on TV and really cornered him and asked him why a young person with an intellectual disability was put into a nursing home. And the minister, within a day, issued a formal apology to Teresa. [00:40:15] Speaker B: Excellent. [00:40:15] Speaker A: And that was tremendous. But the beauty of this was, okay, so Teresa gets this apology on TV, and we're all clapping and we're all happy. But he didn't actually send anything to Teresa. And Teresa was maybe a little bit upset about that. So a few months later, we did a video of Teresa where she's written a letter to the minister of health asking for an apology, asking him if he forgot to write to her. And it's just beautiful. It's beautiful. And just to see her on camera asking for an apology from the minister and asking him politely to please send her a letter, it was just lovely. And within another couple of months, because nothing happens fast with the government, the minister did send a letter of apology, and we have it framed on our wall and the hallway. [00:41:18] Speaker B: That must feel like quite a feat for her. [00:41:21] Speaker A: Yes. [00:41:22] Speaker B: Teresa, as for you, too. [00:41:25] Speaker A: Yes. [00:41:27] Speaker B: So it sounds like Teresa has come out with the best of what could have wrote. She's writing books, she's publishing things. She got an apology. She's with probably her favorite sister. I'm wondering, what is both yours and her relationship now with your family? [00:41:57] Speaker A: Well, unfortunately, they have not come to terms with things. They're really in denial. They have not come around to recognize Teresa's many achievements and the fact that she should never have been put into a nursing home. Still, after all this time, after all this, to just. I keep on going back to my inner self and I say, I look at Teresa and I see how beautiful she is and how vibrant she is and how loving she is. And I know that I've done the right thing, and I hope that one day my siblings will come around to apologize to Teresa and recognize that she does have many gifts and has wonderful life. [00:42:53] Speaker B: Do they interact with Teresa at all? [00:42:58] Speaker A: Well, not really. The thing is that because we got the court settlement and we got Teresa some money, they are sent reports and photographs of the wonderful things that Teresa is doing. But we don't hear anything back. [00:43:22] Speaker B: So it makes me feel like this feels, like, very financially motivated. Yes, well, yeah, I know. [00:43:35] Speaker C: Leave that there. [00:43:39] Speaker B: I'm sorry. It is very sad because you had such a close family growing up, it seems, and you all were very interactive with Teresa. [00:43:52] Speaker A: Yes. [00:43:54] Speaker B: I wonder, writing this book for you, was this cathartic for you? Did it help? [00:44:02] Speaker A: It was very cathartic. The thing is, it's taken me ten years to get this book out the door, and I was so afraid to tell this story. [00:44:14] Speaker B: Why? [00:44:16] Speaker A: The thing was that I told part of the story because I would tell the system conflict, but I didn't tell about the family and the sibling conflict. And so in publishing this book, I've had to take many steps. I've talked to lawyers and I've used pseudonyms and the photographs that are in the book. I have photographs, but all of my siblings are depicted as white silhouettes, and that's for their privacy. But it also symbolizes that they're missing from my life and from Teresa's life, which is sad. But the thing is, know, I really had to make a choice between them, family and Teresa, and I felt that they could protect themselves. But nobody was standing up for Teresa, and I had to do it. [00:45:20] Speaker B: It feels like you wanted to make sure that you could sleep at night. [00:45:25] Speaker A: Yes. [00:45:28] Speaker B: I wonder, what does Teresa think about the book? [00:45:33] Speaker A: Well, Teresa loves the book. She just loves seeing photos of herself. And she's contributed to the book. And so we've got her poetry in the book and some of her drawings, and that's really definitely. We're just releasing a video now which is with siblings Canada, and it is of Teresa looking through the book and showing pictures, and it's really lovely. [00:46:05] Speaker B: I wonder, how do you feel like this has helped people in similar situations? [00:46:12] Speaker A: Well, I don't know yet. I mean, the book's only been out for a couple of months. That I think what I would hope is that if people are aware of our story and they see things unfolding in their own family, they think, I don't want things to go off the rails like they did in Frankie's family. So it's a cautionary tale. And they go, I think we're going to make sure that we are respectful and include the person with a disability rather than exclude them from planning about their own lives. [00:46:49] Speaker B: I do want to mention about in your book of how you really do, I'm not sure the word to use. Just very adamant about documentation. And from anywhere to emails to, it talks about you having your little silver recorder that you have and that you document things. And I really think that that's true. That is the only way to get around the he said, she said, whatever. Said that you have that. [00:47:26] Speaker A: Yes. Well, I started sort of alarm Bell started to go off in my head when my siblings stopped putting stuff in writing and in emails. And I thought, there's something going on and I'm going to make a record because I don't understand what's happening. And by making a record, I will have something objective that I can calmly sit back and see what's happening. But it was an insurance policy, too, in case things went off the rails, that I would be able to prove what was said and why. [00:48:13] Speaker B: How did your father have. Did your father make any amends with the family? [00:48:23] Speaker A: Well, the thing is, at the end of this book, one, we see my dad going back to the condo, but at the beginning of this next book, which is escaped Lotus Land, which isn't released yet, we're going to see that he gets put into a nursing home. [00:48:44] Speaker B: Okay. [00:48:44] Speaker A: And he agreed to go into the nursing home, but he didn't realize what the circumstances were going to be. He didn't realize that it was going to be a dementia lockup ward. And so it was really tragic. And he said that he would go in if nobody double crossed him on taking care of Teresa and that Teresa should stay with me, which was wonderful. But the same day that he was put into the nursing home, and it was just so frightening and so upsetting. But police came to our door with a missing person order to take Teresa back to the nursing home. Oh, my gosh. I know. [00:49:35] Speaker B: How could they do that? They couldn't legally do that. [00:49:41] Speaker A: I don't know. I think the nursing home that was reporting that Teresa was missing, despite the fact that it had been years. [00:49:53] Speaker B: Had. [00:49:53] Speaker A: Gotten her discharged properly. But we were not intimidated at that point. This had been our second run in with the police. We remembered to use the audio recorder and the iPad and we kept them running. We told them it was running. And at one point, the police officer says, is the camera running. [00:50:21] Speaker B: Oh, my goodness. Well, go ahead. [00:50:26] Speaker A: It was really emotional evening. I was so afraid that they were going to take Teresa back. And I don't know why they didn't exactly. I mean, we called our lawyer, we showed them the videos and photographs that we had. We showed them documents, and they talked to various people and they talked to Teresa. And Teresa said she wanted to stay with us. I don't know what was the final thing that made them change their minds. But the police did not take Teresa that night. Thank God. [00:51:08] Speaker B: I'm wondering if they just saw so much more work than they wanted to do. [00:51:14] Speaker A: I was wondering if they saw themselves on the front page of the newspaper. The next. [00:51:23] Speaker B: There is that you are kind of known strong advocation. You won a Penn Canada prize. [00:51:37] Speaker A: Yes, that's right. [00:51:40] Speaker B: Can you talk a little bit about that and what your feelings around that? [00:51:46] Speaker A: Well, it was a great honor to win it. And it was regarding getting blacklisted by the canadian government for my work on climate change. And I managed to get 2172 documents from the canadian government, and I got a lot of them unredacted. And we were able to see that government officials were saying things such as, this artist advocates against government policy. That was their justification for interfering in my climate change art show, which was supposed to tour Europe, but was. Jeez. [00:52:39] Speaker B: Well, congratulations on the prize anyway. Thank you. I wish you the best of luck on the second book, and thank you. I know these things sometimes take time, especially if the stories are still kind of unfolding or it takes time to get them all together. So great job in your advocacy altogether, and I'm sure a lot of people out there thank you for the work you've done with this type of sensitive subject, really pertaining to all people with disabilities that are being forced or talked to about going into nursing homes. [00:53:22] Speaker A: So what I would say to the listeners is, don't underestimate yourself. Speak up. You can make a difference and make a record. [00:53:32] Speaker B: How can people get your book? [00:53:35] Speaker A: It's on Amazon, and it will be at libraries if people request it. It will be available in bookstores if people request it, but certainly it's on Amazon. [00:53:48] Speaker B: Frankie, thank you so much for being on, and I wish you and Teresa the best of luck, and your husband, too, because he played a part in you. Thank you, thank you. And thank you for joining disability and progress. The views expressed on the show are not necessarily those of KFAI or sport of directors. My name is Sam. I'm the host of this show. Thank you so much for tuning in. Charlene Dahl is my PR and research woman. Tonight we spoke with Frankie James. Frankie talked about her book Freeing Teresa, a true story about my sister and me. If you want to be on the show or have a great topic or a book that should be definitely represented, you can email me at [email protected]. Thanks so much for listening. Goodbye.