#088 Love and accountability in the face of the tyranny of the “normal”

Genia:
Welcome to the Good Things in Life podcast. I’m Genia Stephen. Today’s guest is Victoria Freeman. She’s a writer, a theater artist, and a public historian. Her late sister, Martha was a resident at the Rideau Regional Centre in Smiths Falls, Ontario from 1960 to 1973. Victoria’s recent book, A World Without Martha: A Memoir of Sisters, Disability, and Difference, explores her experience as a sibling of a child who was institutionalized because she had Down syndrome. It was released by UBC Press on October 1st, 2019, and was shortlisted for the 2020 Lambda literary award for Bisexual Non-Fiction. With L’Arche Toronto Sol Express, a performance ensemble whose core members have intellectual disabilities, she co-created Birds Make Me Think About Freedom, a play about the history of institutionalization for intellectual disability. Victoria. Welcome. Thank you so much for joining me on the podcast. As we were talking about just before we started recording, this was a very difficult book for me to read, which I devoured quickly. Um, and I think that, while I wish it, wasn’t a story to tell, I think it’s a story that needs to be told. So thank you so much for, for joining me today.

Victoria:
Thank you so much for having me. It’s really an honor.

Genia:
Thanks. So I wonder maybe Victoria, if you could talk about why you decided this book needed to be written,

Victoria:
Uh, it was not so much a decision as a compulsion, uh, because I needed to heal. Uh, I was in my fifties and I realized I was still haunted by what had happened to my sister, uh, and to me as a result of her institutionalization and it has affected my whole life. Um, and I needed to come to terms with that.

Genia:
So the, maybe you can tell us just a little bit of the backstory of your family.

Victoria:
So, um, I grew up in Ottawa. Uh, I was born in 1956 and my sister Martha was born two years later in 1958. I grew up in a middle class, white family, um, at a time, uh, when children with Down syndrome were, uh, basically seen as not belonging in the family. Uh, and so my sister was institutionalized when she was 20 months old and when I was four years old.

Genia:
I think I’m just realizing Victoria, I’m sorry to cut you off that we should probably warn people we should have. I probably should have started a trigger alert in the, in my introduction and I didn’t do that. So I just want to pause you right here. Um, so that we can just give listeners the opportunity to decide maybe when and where, or even if they want to listen to this podcast episode, because we’re talking about some really hard things. And one of the things that you have done in your done in your book is probably not the right way of saying that, but you are, um, very transparent and sort of unrelenting in your honesty about what happened in your family, how people thought about Martha, how you thought about Martha. Um, and it’s, it’s pretty hard stuff. So I just want to, sorry, just want to pause and give people that opportunity to make that decision in case they’re, you know, driving in their car right now, or surrounded by, um, by people who might be, might be hurt by some of these realities. So anyway, sorry, keep going.

Victoria:
Well, and I would add to that, that, um, I started out, uh, loving my sister as, uh, an older child delighted by this, uh, new and interesting being in my life. Uh, I didn’t understand any of what was going on. Uh, and I think my book is about sort of my socialization, first of all, away from loving her and my, then my, uh, deconstruction of my socialization to come to that place of honoring that love that I was really not allowed to feel and needed, needed to express, but couldn’t.

Genia:
Yep. Very early in the book, you talk about Martha as an infant and, um, you talk about Martha being the first person in your life, who you felt was distinct from you and yours and how wonderful that love was and, you know, trying to make her laugh and like, you know, just doing all of those big sister little sister kinds of kinds of things. Um, and so when I interrupted you, you were saying you were talking about your family and the context of sort of what was thought about people with Down syndrome at that time.

Victoria:
Well, that’s the hard part. Um, basically people with Down syndrome, children with Down syndrome were considered not to have anything to contribute to society. They were definitely seen as inferior, defective, um, freakish, like all, all those sorts of things. And I’m even sorry to repeat those words. It’s, I know it’s very painful. Um, uh, so there was just this sense that she was a – like her birth was a tragedy in our family and she would be a burden on society basically. Um, there wasn’t a sense that we could have a loving, joyful, creative relationship with her, uh, that she could grow and develop in interesting ways. That was just not part of the way that she was seen.

Genia:
And so, and, and your parents were, were told, or it was recommended to them that they instituted institutionalize Martha at birth. Um, but that didn’t happen. Why not? You know, the decision was made to institutionalize her. What’s your sense of why your parents made the decision not to do that right away?

Victoria:
I’m not really sure why that happened. Uh, I know that even in 1960 the institutions were overcrowded and there were waiting lists and, uh, so not everyone could place their child, even if they wanted to right away. I don’t know if that was the case of my parents or my mother felt, uh, or my parents felt that they wanted to give her at least a start in life where they had some control over what happened to her. Um, that is, there are many unknowns in my story because it was really difficult to talk with my parents about this throughout their lives and mine. Um, there was a lot of defensiveness and, and fear on my part of, of upsetting them. So there are a lot of things I’ve had to piece together as best I could,

Genia:
And yet, excuse me. And yet, in the book, even when you’re talking about those early years before, you know, while the 20 months before, um, Martha was institutionalized, you observed some things that were not very flattering about your mom and her reaction.

Victoria:
Yes. I’d say my mom in particular had difficulty relating to Martha, loving Martha. She was, uh, kind of cold with her, just not as warm as a mother would normally be. And I, I think, uh, someone said to me, um, that it was very, um, difficult for a parent at that time to openly love their child, that it was dangerous for her in some ways to allow herself to love my sister. Um, so, uh, you know, I, I try to understand where some of that was coming from. She also was raised at a time of eugenics. Um, when, you know, people believe that, uh, only certain people should reproduce and that, uh, people who were defective in some way should, you know, be prohibited from reproducing. And, uh, I think also she had suffered social ostracism in her own life because her parents had divorced at a time when divorce was not socially acceptable. And so she knew firsthand what it felt like to be ostracized and teased and all of those things. And she didn’t, I think she was fearful for herself, but I think she was also fearful for the rest of us.

Genia:
So then what changed so that the, you know, there was, had to be some precipitating event and you talk about your mother’s pregnancy as, as perhaps that precipitating event that then motivated them to pursue Martha’s institutionalization.

Victoria:
Yeah. And I also do want to mention that what doctors told my parents, uh, was that, you know, if she was institutionalized, she would receive better care than she would get anywhere else that it was tailored for her. Uh, and she would be with others kind of, of her own kind, which is, you know, a belief that, that people with Down syndrome are fundamentally different, which they aren’t, but that was a belief at the time. Uh, and she also, uh, was told that it would be better for me and any other children she had, uh, if, uh, Martha was sent away because it would take up too much of her energies. So, uh, when she became pregnant, I, I think there was increasing pressure to, uh, to institutionalize Martha. And in fact, she went into the institution two weeks before my sister Kate was born.

Genia:
And what do you remember of that, that transition?

Victoria:
Remarkably, I don’t remember anything about my sister going to the institution, which shocks me, but I don’t remember that. I do remember my sister Kate’s birth. And I think like in trying to really listen to my own feelings, I uncovered the bewilderment and confusion that I felt that suddenly there was a new baby in the place of my sister, uh, and the baby that my parents liked better, it seemed, um. So that was, uh, both confusing and I think I was angry because there were, there was no way for me to talk about that or express it. And I was only four. I couldn’t even articulate the feelings that I had.

Genia:
You do remember. And you write about in the book about visiting Martha at Rideau Regional. I wonder if you could tell us a bit about that experience?

Victoria:
Yes, that was, uh, quite frightening to me as a small child. And first of all, it was huge. There were 50 buildings there were at, you know, in the early years when my sister was there, there were 2,600 children and adults who were institutionalized there. So it was a massive place where people who were different and kind of rejected got sent. Um, and it was also scary to me because when we walked in the building, first of all, it smelled funny that institutional smell. And, uh, as we walked down the hall, sometimes groups of children or adults would kind of crowd around me and try to touch me. And to me, many of them were not verbal. They kind of grunted. I, I had no way of understanding what was happening. I felt that they were, you know, they were very scary to me. Looking back on it, I realize they were so deprived of attention and love, and I was also a new somebody new in the building and, you know, all of those things. So I understand what they were doing now, but at the time I, I was terrified.

Genia:
And how did your experience of the institution impact your experience or your perception of your sister?

Victoria:
That’s another hard question. Um, I definitely felt that my sister was subhuman in some way. That was the message that I got. That she was a mistake. She was, you know, all of these horrible things. And, um, I, I certainly didn’t want to be there. I hated going there to visit my sister. I didn’t want to be there. And then I felt guilty about not wanting to see my sister very much. And, you know, there was a whole morass of conflicting and difficult emotions that also we, as a family couldn’t really talk about. So we just kind of tried to pretend everything was fine, but it wasn’t.

Genia:
Yep. And so you’re around this time four, your, you now have a new baby sister you’re getting ready for, you know, school and, you know, navigating your, your new life. And prior to going to school, we’re going to read a passage from the book about your experience, your first day of school, but prior to going to school, do you have any, sort of, thoughts or insights about, you know, what you felt about your place in your family, or what you felt about your sense of self and belonging in the world? Like who were you, I guess, you know, like who’s that little mind.

Victoria:
I think what I concluded from my sister’s banishment from the family was that I needed to be smart and I needed to be good, uh, especially good and smart to make up for my sister, uh, because of the great pain, that had caused my parents, that she was not who they hoped she would be, but also for fear that if I didn’t measure up that I could be sent away. And, uh, I think that was, you know, something I wasn’t conscious of, but it was there.

Genia:
Mm. So, um, maybe now is a good time for you to read the passage from the first passage, from your book. And the context while Victoria is turning the pages here, the context of this is that four months after Martha was banished to the institution, Victoria started kindergarten for the first time. And so her mother walks her to school and they come into the, they walk through the school and there are happy children playing around and they walk into, um, the kindergarten class and Victoria is looking around, take it away. If you’re ready to read Victoria.

Victoria:
The children sat at a kitchen table, set with plastic plates. And they were even pretending to cut up imitation fried eggs and toast with plastic knives and forks. It was the most marvelous play kitchen I’d ever seen. And I was itching to go explore it. But something about this room also made me uncertain. And I hesitated in the doorway, unsure about whether or not I wanted to enter. A slender, dark-haired woman, waved us in and came over to meet us. She had a kindly face and told us her name was Miss Sloan. She took my hand and began to lead me farther into the cavernous room. Suddenly my mother gave me a kiss on the top of my head. “I’ll be back to pick you up at lunchtime,” she said, in an excessively cheerful voice, and she began moving away from me heading towards the door. A strange and awful sound came out of me. My mother turned back, a look of panic on her face. “She’ll be fine,” Miss Sloan said to my mother and waved her out. I stared in horror as the door closed behind her. For a moment, I went still. Then I began to whimper and then wail. Miss Sloan held me in her arms and repeated that my mother would be back at lunch, but I couldn’t…

Victoria:
I wept with every ounce of my being, every last breath of oxygen, on and on. I could not believe what had happened. That my mother had abandoned me. I did not know how she could do that. I knew full well that whatever she said, she might not be coming back or that she might never let me come home. I did not want to be given over to strangers as my sister had been. I felt like the shudders and heaves would never stop coming out of me. It was like the violent act of retching when you expel every last vestige of food or drink in your body, and it feels like your insides will come out too until you are turned completely inside out. The room was spinning. I was completely beside myself, unconscious of who saw or what they thought of me. Eventually, finally, the shudders diminished and everything was spent. I lay curled in a fetal position on the cold floor with my eyes scrunched shut, willing myself somewhere else, anywhere else, but there in that room without my mother.

Genia:
So, This story, this piece of, of your story really hit me. Um, and you know, obviously hit me as I was empathizing with, you know, this four-year-old child, um, who’s having this experience of abandonment, but also because of this, of the sort of like, just thinking about the psychological, um, and mental wellbeing of people when they know to their core, all of a sudden that abandonment is a distinct possibility in their life. And of course, um, you know, Martha’s institutionalization or the, you know, institutionalization for any reason of a sibling is not the only way that children learn this, sadly. Um, but just, I thought your story was so, so beautifully brought out the terror and horror of that. Um, and when we think about the, when we think about siblings in general, um, and the number of people over the decades who have had this experience of expulsion of a family member, I mean, never mind the experience of the person who’s been banished, but you know, just this idea that for generations we’ve been teaching our youngest children that abandonment is a distinct possibility. Um, so anyway, that really hit me throughout your book though, um, back to you and your story. Um, you talk through, as you’re discussing your whole life, you, you know, your, your whole life, you talk about how that reality, um, that you could be abandoned, um, as really fundamentally shaping who you are. And I wonder if you just want to talk a little bit about that, what the impact of that was.

Victoria:
Yeah, sure. Um, first of all, I just wanted to say that I think when my sister was put in, in the institution, I lost the security of my parents’ love and, you know, that is so profound to children to need that unconditional love. And when it be, when you start to feel it’s conditional, everything changes. Yeah. So that was definitely true for me. Um, even though my parents gave me lots of love and I otherwise had a happy childhood in lots of ways, uh, that core of insecurity was there. So, um, how that affected me during my life, well, lots of different ways, uh, over the course of my life, I, I came to realize that I had actually gone through an experience of splitting psychologically so that I couldn’t allow myself to feel the part of me that loved my sister or that felt the loss of her so keenly and was so bewildered by that. And so, I didn’t know, parts of myself. I shut off parts of myself. That’s certainly one of the things that happened. Um, I also witnessed my sister’s dehumanization and I think for siblings, that’s a very particular kind of pain, um, that we haven’t talked about very much.

Genia:
What do you mean by dehumanization?

Victoria:
I don’t think my sister received the dignity and sorry, the respect, uh, or, you know, or, uh, that she was, I don’t feel like my sister was viewed with respect. That she was encouraged to maintain her dignity, her self respect. That, you know, if she was treated as a subhuman, if she was treated as not being worth loving, um, there were all kinds of moments where I would feel that painfully. I could see that my parents were, you know, embarrassed by her, or I was embarrassed by her, ashamed, or they were not giving her the same kind of love they gave to me, and then I would feel guilty. Um, so I had a kind of survivor’s guilt as well, um, that I had received things that my sister hadn’t.

Genia:
And can you talk a little bit more about the, so you’ve talked about the sense of sort of splitting off of yourself and, and in the book you talk about that as not sort of being like, just not your full self, but that, that splitting really had a very significant impact on, on your wellbeing and your life? And I wonder if you could talk a little bit about that.

Victoria:
So I think I internalized a very, uh, critical voice. Uh, that sometimes I identified with my sister. Uh, certainly I, because I had some survivor’s guilt because I felt so guilty about my privilege relative to her. Uh, it was a way that I could, that I undermined myself. And then, for example, I was in an abusive, emotionally abusive relationship where my partner could easily make me feel really badly by playing on my guilt. He might not have known where it came from, but I could not defend myself because of that deep, deep feeling that I was bad because I did not love my sister, had enjoyed these privileges, et cetera. So I think, uh, it was very damaging to my mental health. I ended up having a breakdown. Uh, I actually feel like I’m lucky to be alive because I went through a very dark period in my twenties.

Victoria:
And it was really only when I realized that I had actually blamed myself as a four-year-old for my sister being sent away. Um, when I realized that it was like this huge weight came off my shoulders and I realized that I didn’t have to hate myself in that way. Um, and that it wasn’t my fault, you know, um. But four-year-olds don’t know that, you know, so, uh, it’s taken years of therapy quite honestly, uh, as well as the process of excavation, inner excavation, that went into writing this book that helped me understand all the ways that this experience damaged me, made it very difficult to love myself and take good care of myself, um, and be, and that’s a whole other part of it too, you know, in terms of my sexuality and gender identity.

Genia:
So maybe, um, now’s the perfect spot, perfect point for you to provide, uh, just maybe a little bit of context for that experience or, you know, how you were experiencing yourself early in, earlier in your life and then read the next passage from the book?

Victoria:
Sure. So even in high school, I became aware that I was attracted to women as well as men. And, uh, that was very confusing back in the late sixties, early seventies, um, homosexuality was still thought of as, uh, well, it was criminal until I think 1969. And then after that, it was deemed a mental illness. Uh, so it was my own version of the fatal flaw, uh, like the one my sister had and, uh, even more, confusing because I even in the early 1970s, when there, you know, there started to be a gay rights movement, it was very polarized. You were gay or you were straight. And so people like myself who had a more complex identity and sexuality, you know, as a bisexual, pansexual, whatever you want to call me person, um, uh, I really couldn’t figure myself out and there was no place to,

Genia:
And, and part of that was recognizing that this aspect of who you were was not acceptable to your parents.

Victoria:
Well, I didn’t know if it would be or not. Uh, but my fear was that it would not be. And I think in fact, they were, uh, tolerant is maybe the word, which is not full acceptance, but, but, you know, I think we could have had more of those conversations, but because of this earlier experience of my sister’s complete marginalization and isolation and banishment from society, from her designation as abnormal, uh, I had, uh, a terror of ending up in the same place.

Genia:
And, that terror, your family aside that terror was actually quite, well-founded given the experiences of people at that period of time and still today, but particularly in that period of time. Yeah.

Victoria:
And in Ottawa where I grew up, uh, like the RCMP was busy, spying on queer people in the military, in government, they were making maps, pinpointing where queer people lived and where they went. Like it was real.

Genia:
Okay. Um, will you read the next passage?

Victoria:
Yes.

Victoria:
But even more than my fears of exclusion and persecution, what I could not bear was the thought of disappointing my parents. It wasn’t even that I feared they would reject me outright. I didn’t think they would, though my mother would likely, never forgive me for the social embarrassment I would cause her and my father would likely pity me for my misfortune. They would certainly tolerate me as they tolerated Martha, even if my unfortunate sexuality diminished their love for me and certainly their understanding of me. I feared there would always be an unfathomable chasm between us if I revealed myself to them. I would have dashed their hopes and dreams just as Martha had. I profoundly believed that they needed me to be normal and I could not bear to hurt them, even if it meant disowning a part of myself.

Genia:
So this idea, you know, we’ve earlier the passage you read earlier in the book talks about just that sort of fundamental realization that abandonment is possible. And this really speaks to, well it speaks to many things, but speaks to the idea that as we recognize who we are as people that as you, as you said, we may have some fundamental flaw which will make us unlovable or unacceptable. And that this reality of, of banishment is, is the basis upon, or not the only, but as one basis upon which we live in fear around that, that we are unacceptable and, and unlovable. And this also really highlights painfully highlights for me, just, I can’t imagine what that reality, that experience of knowing that something was fundamentally flawed about her, that Martha would have lived with, you know, like how deeply and profoundly that, um, it wounds people to be unacceptable to their parents to be, um, to be the person who is dashed their hopes and dreams. Um, yeah,

Victoria:
Absolutely. Can I speak to that? Um, we saw this, you know, my sister, I didn’t know very much about my sister’s experience in the institution while she was there. And only afterward was I able to get access to her institutional file and read about, you know, that she didn’t have much trust in other adults and she tended to spend a lot of time alone, et cetera. But what was really telling was when she left the institution by some fluke, uh, she ended up in the care of a woman who absolutely loved her. And the transformation in my sister was amazing. Uh, she started speaking so much more clearly and, and she was laughing and she was talking all the time and she, she just blossomed. So I think it speaks a lot to just how profound that need for love and acceptance is.

Genia:
Mm mm. And, and one of the things that seems to me very profoundly related to this, a desperate need for love and affection, um, is, uh, is the fact that you, you write throughout your story about how excited Martha was to see all of you, like how much she loved all of you and how much she, um, you know, continued to be willing to be in this really dysfunctional relationship that was defined by rejection. Um,

Victoria:
Yeah, it’s pretty remarkable. Um, she always thought of us as her family, even when we only saw her a few times a year, um, briefly and didn’t do much with her and largely ignored her, even when she was home. It astounds me, frankly. Uh, I mean later in her life and hours, she was able to visit us for longer periods and we had more sort of social gatherings with her and that kind of thing. But yeah, she, she continued to love us. And to me, uh, that was something I only really realized and valued until much later in my life.

Genia:
Yeah. When I’m, when I was reading the book, I mean, I’m perceptive and well-informed enough to understand people’s, um, desire for connection and desire to be loved. And you know, all of the things that go into making somebody persist in, um, in maintaining those connections, even if they are rejected in their persistence. But as I was reading the book, I kept thinking, I kept wanting Martha to be like, you know what, screw you guys, you know, this is not, this is not okay. And I, like I said, I know better. Um, but there is something just so horribly tragic, um, with that level of, um, neglect and rejection when the person is still lovingly reaching out and excited to see you.

Victoria:
Absolutely. And, you know, she didn’t want to leave us. It was always a hard scene when it was time for her to go. And that was particularly hard for my other sister because she knew that she had sort of displaced Martha. Uh, so that would trigger her guilt. Um, yeah, but also, you know, Martha, I learned from again from, from her file that, Oh dear, I’ve lost my train of thought, what can I do?

Genia:
That’s okay. That’s okay. I’ll, I’ll pick it up here. The, you just said that she was always, she, she never wanted to leave and that just really speaks very profoundly to what her experience must’ve been like in the institution. Because when she came home, you said later in life, things were a little bit better, but early in life, your visits with her were not positive. Like they were still full of cues of rejection and neglect and coldness and distancing. And she yet, she still didn’t want to go. So thinking about what life must’ve been like in the institution for her to want to stay at home in those circumstances is also pretty profound.

Victoria:
Well, two, two things, uh, her first full sentence that we ever heard her speak. Oh,

Genia:
Right. Yes. You have to tell this story.

Victoria:
So one, uh, one day my brother, um, my little baby brother was crying in his room after he woke up from his nap and Martha was visiting us and she came and she knocked on his door and she yelled at him, “Shut up kid!” Those are the first words we ever heard her say in a complete sentence. And I knew how many times she must have heard that for that to be what she would say. So that was pretty shocking. And I think it also shook my parents a bit that, you know, but they continued to keep her there. Um, the other thing I was going to say was that you know, in her file, uh, it was recorded by a social worker, even after Martha had left the institution and was living with her caregiver, uh, that when she came home to visit us, she would be quite depressed when she came back. Not because she was sad to go back to her caregiver at that point, but because it hadn’t been a good experience visiting us. And I think that was probably the most painful thing that I read in her institutional file to know that those visits, which had definitely been excruciating for us, or also excruciating for her.

Genia:
[inaudible] one of the things that I was reflecting on after finishing the book, was this, the idea that being that taking care of each other and being invested in each other, um, and feeling a healthy sense of responsibility to sort of know each other, that that’s taught. Because the piece of your book that made me think about this, and just thinking that not everybody who’s listening will have read it is that even as you got older, as you started to heal from, you know, realize the trauma that Martha’s institutionalization had caused you, you know, the splitting that you’re talking about, your breakdown. So you’re now on the other side of that you’re healing. Um, you’re, you’re building, um, a life for yourself that’s good and healthy in many, many ways. You’re still not really. You don’t really have a relationship with Martha. You’re an adult now you’re no longer under your parents are no longer leading what’s happening in your life.

Victoria:
That’s right. No, uh, it’s shocking to me, uh, that I didn’t have a relationship with her. I didn’t know how to have a relationship with that with her, that I didn’t visit her, except when she was visiting our family. And really my relationship with her only changed after she died. And, uh, it was shocking to me when, at her funeral, you know, 60 people showed up talking about how much Martha meant to them and how wonderful she was. And I could only sort of relate stories that other people had told me. And I really, I didn’t know who I had lost. And it was partly after her death, and that realization, that I started really trying to find out more about who she was, what she had experienced. I connected more with the woman who had cared for her, um, you know, wanting to know more about Martha’s life after the institution, as well as in the institution.

Genia:
And of course, there’s only so much you can know from the ashes, right?

Victoria:
Yeah, yeah. That, that is, uh, a grief that, that I continue to feel.

Genia:
Yeah. I’m sure. I’m sure. So how old were you when you went back after Martha’s death to visit Rideau Regional with Mark, your partner?

Victoria:
Uh, I was in my fifties. So, uh, you know, uh, quite a lot older, uh, she died in 2002 and it was, I forget 2013 or so that, that I went back, maybe it was 2012. It’s in that, in that time period. So many years, even after she had died.

Genia:
Will you read that passage from the book?

Victoria:
I will.

Victoria:
It amazes me now, but that day was the first time in my life that I truly asked myself what Martha had experienced at that institution, and in particular, what had been, it had been like to be left there. Staring out at the massive complex of buildings. I began to imagine the enormity of being abandoned there at the age of 20 months. You sleep in the car on the way to Smith Falls. And then you were left here, held here, people push spoonfuls of food into your mouth, change your dirty diaper, wipe your bum and your [inaudible]. Some of the many things that are simply done to you. Those you knew before are like phantoms in a dream. Not one thing here is real. It is at first an utterly meaningless life. Shapeless, formless, strange. Not one thing is familiar except your own hand, your foot, your own breath, your fingers.

Victoria:
You have lost the one who gave birth to you and everyone and everything else you knew. You were a small, helpless child wanting and needing to be lovingly cared for and sheltered and not understanding why your parents are no longer here. You have no language whatsoever for that enormous void, that terrible loneliness, that awful despair, that persists day in and day out for a very long time. We’re so vulnerable. So dependent, in a strange place with hundreds, no thousands of others. The routines become familiar but are completely independent of who you are. People come and go for no apparent reason. You were assailed by strange food, strange smells, strange sounds, strange hands. No one knows who you were before. You lie for long periods in a wet diaper, cold or hot. No one comes. You cry and no one hears too many are crying. “Shut up, kid!” Nothing makes sense. Nothing in your previous life prepared you for this. You must start over or die, become a different you. And yet, somehow you do not die. You survive in this new world where no one loves you. And where there are so many others, all clamoring for attention.

Victoria:
You have no idea of what has happened. No one has even tried to explain it to you. You become angry, withdrawn, aggressive, rough. You fight for your space, for yourself. You fight to survive it. Somehow you continue to love us in spite of what we have done to you, in spite of my distance and neglect. You love me.

Genia:
So I just need a minute. So, one of the things, um, so I think that’s beautifully written and yeah, one of the things that was really, um, so distressing for me when I was reading the book, um, is that you don’t have any details to fill in that picture. Um, you know, you surmise, you wonder about some things. Um, and what we know about, you know, residential institutions, group homes, segregated school settings, day programs, um, is that generally, uh, when people can’t tell their own story, it just doesn’t get told.

Genia:
And if there aren’t people around, you know, who have sort of deep and meaningful, freely given and ongoing relationships with people, um, that actually really, really bad stuff happens.

Victoria:
Absolutely.

Genia:
Um, and, um, so it’s heartbreaking for me that, you know, your, your story, um, and I know heartbreaking for you as well, Victoria. So your, your memoir, your story, which I’m just looking here, um, of 305 pages actually leaves us not knowing Martha at all, um, because you didn’t.

Victoria:
That’s right. And, you know, I, I learned a lot from listening to survivors. I’ve spent a lot of time since the class actions connecting with survivors, connecting with other family members.

Genia:
And I just want people, not all the listeners will know what we’re talking about about the class action suit. So maybe you can just, um, explain briefly what you mean by that, and then tell us about your experiences getting to know those people.

Victoria:
So, uh, the, uh, of the large institutions, uh, were closed in 2009 and starting in 2010, uh, first of all, um, Marise Lark and Pat [inaudible], who were two survivors from Huronia, uh, with our litigation guardians, Marilyn and Jim Dulmage launched the first class action, uh, against the government, the federal, the provincial government, uh, for, uh, basically for abuse and neglect. Um, and, uh, once they started telling their stories, which they did so bravely, um, sort of the flood gates opened, and lots of other people started telling their stories of abuse and neglect and poor treatment and everything else. Um, physical abuse, sexual abuse, you name it. Um, and, uh, after the Huronia class-action, uh, David McKillop, who was, uh, became a leader litigant for, uh, the Rideau Regional Centre and was supported by Vicki Clark, uh, they launched the class action for the Rideau Regional Centre. Yes. And then there were others for other institutions, and these were finally settled, um, by the province.

Victoria:
Uh, and there was a compensation package that was rolled out, not the best, but, uh,

Genia:
Totally lame.

Victoria:
Totally lame. Yeah. And there was, uh, a provincial apology made by then-premier Kathleen Wynne and the opposition leaders, uh, in the Legislative Assembly. So, there were various things that were a part of the settlement, but I went to hear the apology and I also went to hear and witness the day in court, uh, for the Huronia class action. That was in Toronto. That was the first one. And that’s where I met many other survivors, their families and the litigation guardians. And really for the first time, got to know a sort of network of people who had been impacted by the institutions, who were survivors or allies or activists, disability activists. Uh, I grew up absolutely ignorant of all of that. And, uh, it’s been an incredible and often difficult learning experience for me.

Victoria:
The only thing that I would say is I’ve spent most of my adult life working on indigenous issues, and I had really listened a lot to the survivors of residential schools. So I was, I already knew what those total institutions were like and be how bad it can be. And I think that cut through my sort of any denial or disbelief that I had pretty quickly. So while I don’t know what my sister’s experience was specifically, I know it was not a good place for her. And I see even from a photograph that’s in her institutional file that shows this 10-years-old, or 12-years-old, who really is struggling to maintain herself. I know that it was a rough, difficult place to be where you had to fight for yourself then. But yeah, I don’t know, specifics, I don’t know who loved her. I don’t know who her friends were. I know so little about that life.

Genia:
So.

Victoria:
I will say though that I, I do know much more about her later life and I, and I’m very lucky in that respect. And now I know there are lots of family members whose, uh, brother or sister, child died in those institutions. And so they never really knew,

Genia:
Well, Marilyn Dulmage who you just mentioned and, um, who has been a podcast guest in the past and actually we’ve, uh, you and Marilyn and I, um, and perhaps, um, someone else are planning a follow-up to this. So Marilyn’s brother died, um, you know, during childhood in the institution. And so, um, you know, that’s part of her story that we’ll be talking about in, in an upcoming episode.

Genia:
So I guess, um, when, uh, when, as we’re talking, you, you know, you’re talking about, um, cutting through the disbelief about how bad this was because of your, the knowledge you had about residential schools. Um, and, and as we’ve been talking, I’ve been thinking about the number of people who are probably, as they’re listening are probably thinking, um, one of two things, um. It probably wasn’t that bad for everybody, uh, or it could never happen again. And I wonder if you have any thoughts on either of those self-defense responses?

Victoria:
Well, first of all, on the, it couldn’t have been that bad or, uh, you know, I think we have to make a distinction between individual people’s experiences and the system as a whole. So just as with residential schools, there might be somebody for whom that experience was not as bad as for other people. They might have been taken under the wing of a, you know, very affectionate teacher who, you know, really encouraged them or, you know, whatever. Sometimes individuals had experiences that were better than the average. Sometimes there were people who were working in those institutions who did care and really tried., But the system as a whole was fundamentally flawed. And because those institutions were so isolated and because, um, people were not because people were segregated and congregated and because they were tearing apart families and because, uh, people there were not trained and, you know, there were a whole bunch of reasons why those institutions were a terrible model of care, despite even the best intentions of some of the staff and despite, you know, in some variety in individual experiences.

Victoria:
And I think it’s the same as with residential schools there, we know that the system was based on totally false assumptions and damaging assumptions. And I think that was true for these institutions as well. And then I think your other question that it could never happen again, I think, uh, some people are saying it is happening again already, um, because uh, people are ending up in nursing homes. Uh, and they, you know, that are in some ways very similar in, in the law. You know, an institution is not defined solely by a building, a large building. It’s, it’s really about people having freedom and choice themselves, having self-determination, being able to make choices for their own lives and, and being treated with dignity and respect. And that can happen in all kinds of situations, not just a huge institution out in the country. Right. So, and I think with the other thing is that there’s, you know, a lot of the gains that have been made for inclusive education are currently under threat because of COVID. Um, and you know, I, I’m only an outsider to the current struggle that, that, that families are having. Um, but I can see that, uh, there is an erosion of the gains that, that many parents, siblings, activists, and survivors themselves have fought for.

Genia:
Yeah. I love what you’re saying about what you said about, it’s not a building, you know, an institution is not a building so much as a mindset of the way the system is structured and we still have all of those same mindsets affecting our segregated services. Um, and we could go on for hours about, about that. We won’t, but I think that’s a really important, a really important point. So Victoria, if people want to read your book, find out more about you, how would they connect with you?

Victoria:
Um, so if they want to know more about me or, uh, contact me, they can reach me through my website. If you just Google Victoria Freeman and the website’s victoriafreeman.ca uh, comes up pretty quickly. Uh, you can order the book through my publisher, UBC Press through any bookstore and or any online bookstore. It’s easy to find.

Genia:
Wonderful. Thank you so so much. And so, uh, just remind people that the name of Victoria’s book is A World Without Martha: A Memoir of Sisters, Disability, and Difference. Victoria, thank you so, so much for joining me today. I’m, I’m really very, very grateful for your time, your honesty, your vulnerability, um, and, uh, and I’m grateful for your book, even though reading it was terribly painful for me.

Victoria:
Well, and thank you also for asking me these questions. I really appreciate the opportunity to just to speak at this level about the experience behind. the book and the book.

Genia:
Yeah. Thank you.

Victoria:
Thank you very much. And thank you for the chance also to honour my sister.

Genia:
Of course, of course.

Genia:
Thank you so much for joining Victoria and I for this conversation. This podcast episode, this book has been really hard for me. A World Without Martha: A Memoir of Sisters, Disability, and Difference is painful to read in many ways. It’s difficult. It’s brutal, brutally honest and transparent. It caused in me, um, sometimes, um, unwilling excavation of my own internalized devaluation, and it’s a beautiful piece of art. And I think that sort of transformation, um, that we can experience when we are really unpacking some of the brutal realities of our world and our experience, um, and then thinking about how we might be able to heal from that and how we may be able to support others in their healing, maybe provides an insight so that others don’t experience the trauma. Um, you know, I think that that’s, in some ways what art is all about or can be. And this book is beautifully written.

Genia:
Um, you know, Victoria really is an artistic writer. Um, and I encourage everybody to, to read the book. Now, if you are left thinking about how you can think about relationship building in your son or daughter’s life who has a disability, you might start with the Stay Connected series of resources that we have available. You’ll find that at goodthingsinlife.org/stayconnected And I look forward to speaking to you again next week with Marilyn Dulmage, perhaps, another guest, we’re still working that out about, um, about all of their experiences of having a sibling, be banished from their family to an institution and the difficulty that that is caused for them and for their parents who made these very difficult decisions. Thank you so, so much.