Honouring a Sister Born with Down Syndrome and Overcoming Survivor's Guilt

Posted: Thursday, November 07, 2019

A Q&A with Victoria Freeman, author of A World without Martha: A Memoir of Sisters, Disability, and Difference

Victoria Freeman, writer, theatre artist, educator, and public historian, was four years old when her younger sister Martha, who was born with Down syndrome, was sent away to the now-shuttered Rideau Regional Centre in Smiths Falls, ON, an institution for the intellectually disabled. It has taken Victoria decades to unravel the guilt and shame she felt, and to come to terms with her own “difference,” her bisexuality, in a society that sets what is considered “normal.” In her new book A World without Martha: A Memoir of Sisters, Disability, and Difference, Victoria tells her life story with candid honesty. She shares with Kerry Kilmartin, publicist at UBC Press, her reasons for writing the book and the things she discovered along the way.


What led you to write your memoir?

I wrote A World without Martha because I had been deeply traumatized by my sister's dehumanization and institutionalization for intellectual disability in ways I did not understand as a child, but that I gradually realized had profoundly shaped the most important relationships in my life: with my sister, my parents, my other siblings, my later romantic partners, and especially with myself. I have been haunted all my life by a profound injustice; for years it was felt in my body, but I was unable to recognize it or speak of it. Writing the book was an act of healing and atonement, an investigation of the attitudes to intellectual disability and to difference generally that had so harmed both my sister and me. It is an honouring of my sister's life, an affirmation that she mattered, that her life mattered, when for so much of her life her full humanity was not recognized, even by me. In researching the book, I talked with other siblings of people who had been institutionalized for intellectual disability and discovered that many had been deeply affected by what had happened to their sister or brother, but they had never shared their stories with anyone. Our institutionalized siblings suffered even greater harm, but perhaps by sharing my story I will encourage other siblings to break their silence and to heal. I also hope my book will encourage everyone to question the tyranny of the word “normal” and to consider ways of caring for each other that are inclusive and that offer people choice.


I could hardly put your book down once I started reading it. There were a number of times when I turned the page to suddenly be taken by surprise at the turn of events, or brought to tears by an emotional situation. How did you determine the best way to write your book?

I knew I could not write this story “objectively” or journalistically, even though I did historical research and gained access to my sister's institutional file. I had to start with telling the truth as I experienced it. That was very difficult because what happened to my sister affected me so deeply and so intimately, and it also involved writing quite personal things about my parents, my siblings, and our family dynamics. There was a lot of pain to process and understand, as well as some surprising connections that came out in the process of writing, including how attitudes to my sister's difference had made it so much more difficult for me to value my own difference from the heterosexual norm. Much of this book is written from the perspective of the very young and uncomprehending child I was when Martha was sent away and the wounded child I remained for decades. Because there was so much silence in our family about Martha, I had to approach my personal and familial experience through emotion, imagination, creativity, and metaphor, as well as through memory and historical documentation. I am proud to say A World without Martha is a work of creative non-fiction. It is as much about what it means to be human – about love, healing, relationships, and community – as it is about disability per se.


What is your first memory of your sister Martha?

I was two years old when she was born and only four when she was put in the institution, so my early memories of her are pretty hazy. I do remember playing with her and feeding her, and I vividly remember our early visits to see her at the institution. Those visits were terrifying because as we walked down the main hallway, I was sometimes surrounded by older, larger kids with intellectual disabilities who wanted to touch me. I realize now that those children were starved for attention and affection.


You talk about survivor’s guilt. What do you mean by this?

Survivor's guilt refers to a psychological condition where a person feels guilty for surviving when someone else didn't. It is typically associated with soldiers or Holocaust survivors, but also occurs in non-lethal circumstances. In my case, I felt tremendously guilty because my parents loved me, supported me, and kept me in the family, while my sister was rejected and exiled. As a four-year-old, I thought it was my fault that Martha had been sent away. The realization as an adult that all my life I had felt guilty for something I bore no responsibility for was a major turning point in my healing. But when survivor's guilt is unrecognized, it can play havoc with your feelings of self-worth and even your sense of your right to exist; it also makes you vulnerable to others who can play on that guilt to abuse or manipulate you.   


Did your siblings feel the same way as you about Martha’s institutionalization and her subsequent stay with Mrs. Zaretsky and her family?

My siblings were born after Martha was institutionalized so they did not experience the loss of her the way I did as her older sister. But all of us hated visiting her at the institution, and all of us were affected by the negative social attitudes of the time toward disability, as well as the family dynamics created by the decision to send her away. We were all affected by my mother's guilt. It is remarkable to us now that we never really wondered about what Martha's life was like at the institution or considered that living there might not be the best thing for her. My sister Kate later learned that Martha had been institutionalized just two weeks before she herself had been born, and so Kate felt guilty for displacing Martha, particularly when, as often happened, Martha didn't want to leave us after a visit. I think we siblings were all relieved when Martha went to live with Mrs. Zaretsky – she was clearly so much happier – but at the time we didn't really question why she didn't live with us.


It must have been difficult to write about your mother with such raw honesty. Did the writing process help you to understand your mother better?

Writing about my mother was one of the most difficult aspects of writing the book. My relationship with her was damaged once Martha was institutionalized as she didn't recognize my pain about my sister's removal from the family. I hid my feelings from her so as not to hurt her or be sent away myself. My mother always regarded Martha's birth as the worst crisis of her life, but we could never talk about Martha comfortably and there was a lot about my parents' decision to institutionalize Martha that I didn't understand. Later both of my parents developed dementia, so, in writing the book, I had to imaginatively put myself in their shoes to try to understand their attitudes and choices. That was a good process for me. Also, early readers of my manuscript suggested I delve further into some of the literature on the history of attitudes to disability and difference as well as studies of mother blame; this critical literature helped me judge my mother less and understand her more, and also to consider more of my father's role in these decisions.


You spent the first part of your life, as a child, teenager, and then university student, conforming to social constructions that oppressed forms of difference. When you realized you were bisexual, how did you connect this form of being different with Martha’s?

I first recognized I was attracted to women as well as men in high school, but at the time homosexuality (at least the male version) was a crime in Canada. By the time I was in university, homosexuality was decriminalized but still considered a form of mental illness, and queer people were widely regarded as perverts and deviants, as fatally flawed. I internalized those attitudes. We were shunned, ostracized, and ridiculed, as were people with intellectual disabilities. Having a sister who had been effectively banished from “normal” society, I was terrified that I would also be cast out for my difference, although I also recognized that I could “pass” in ways my sister could not.


In a very provocative passage of the book you relay how we all encounter a form of disability at some stage in our lives. What are some examples of this?

Some of us are born with disabilities, but virtually everyone acquires some form of disability sooner or later, whether it is physical or cognitive impairment as they age, emotional or psychological impairment through trauma, or a disability incurred through accident or illness. Both of my parents ended up with dementia, my sister struggled for years with depression, my brother with addictions, and I was unable to fully function for years because of internalized homophobia and self-hatred.


How has your experience with Sol Express helped you?

Sol Express gave me a second chance to get to know people with intellectual disabilities and include them in my life. Creating theatre with actors with disabilities was a revelatory experience that shattered all my stereotypes for I had never believed that people with intellectual disabilities could be creative. But the members of Sol Express are inventive, expressive, compassionate, and very funny. I came to know each person's gifts and talents, their unique personality, not just their disability, and I saw how drastically I had underestimated my own sister's potential and capabilities. Creating Birds Make Me Think About Freedom, a play about the experiences of those who were institutionalized, with Sol Express was one of the most meaningful things I've done in my life. Perhaps what has surprised me most was that the members of Sol Express have become part of my own community of support; their friendship and encouragement and their recognition and support of my attempts to honour my sister through the play and A World without Martha have been tremendously healing.


How do you feel now that you have told Martha’s story, and yours?

It is a relief to have it all out in the open after feeling as a child that I could not speak truthfully about my feelings about my sister and how I had been affected by her institutionalization. It is also a relief to talk openly about being bi- or pan-sexual and gender queer because I have not been out to everybody and now I am. I feel especially good that I've taken this raw material and crafted what I hope is a work of literature from it, something that has its own shape and beauty, and that can touch others deeply.


A World without Martha is available online at or from your favourite local bookstore (that would be happy to place a special order for you)!

Posted by Megan M.
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