Excerpt of A World Without Martha: A Memoir of Sisters, Disability, and Difference
By Victoria Freeman
For so many years, my knowledge of my sister had been defined more through her absence than her presence, through the shape of the void she left in my life. I had been able to approach who she was only through echoes and shadows, through my own fear of being carted away or of being seen as crazy or stupid, through my fear of experts, those who had condemned her to exile. I had known her in my own mind as the accusing sister, the crazy sister, or the sister who could not speak. Sadly, through most of her life and my own, I had been so affected by my own trauma in relation to her that I had been largely oblivious to what she may have actually experienced. I was never able to see the real person. I had never asked her what she felt, because I had never considered her capable of answering. Unconsciously, I had understood her abandonment, felt it, and absorbed it, but I had taken it on as my own, an appropriation that was not true empathy. I had not recognized that her pain was distinct from mine. The only way I had been able to deal with it was to make it mine, but that was a disservice to her. Now, finally, as my own pain lessened, I could begin to consider hers.
In her book Gender Trouble, the philosopher Judith Butler says that some identities cannot exist. They are outside the norm and are therefore labelled developmental failures or logical impossibilities, rendering them unintelligible and invisible – something I have experienced to some degree as a bisexual, gender queer person. Yet we come to be only through being recognized by others.
Through all the years of her life, I never considered Martha’s particular perspective, her identity, her experience, her subjectivity – her “I” – in part because I didn’t believe she actually had one. However, Butler notes that if there is no subject position from which to speak, then one cannot be recognized as a full human being with desires, wants, and needs. So it was with my sister – it was not only her language difficulties that made her unintelligible to us, to me. We believed that someone else would always have to speak for her, that she had no legitimate voice. Her particular perspective did not seem worth attending to. My family knew her primarily through her difference, yet to us that difference was a useless rather than a productive difference, a difference without value, perceived only as a lack. Yet somehow I unconsciously knew she should have a voice. Perhaps that is why I internalized her voice for so many years – because in the world we grew up in, there was no other place for it. I had been possessed by an injustice.
It was only after her death that she truly existed, that she truly became human to me. But by then there was no “I” to listen to.
Other than her “Shub up, kib!” I had never had any direct indication that Martha had been ill-treated at Smiths Falls. I’d always had the impression that she’d been a bit of a staff pet – but I knew appearances could be deceiving. How ironic that I had helped organize a major regional gathering for survivors of residential schools, had wept through the anguished testimonies of so many who had been abused and traumatized in such places, but was only now beginning to face the possibility that my own sister might have also been treated callously or abusively in a residential institution. Her “Shub up, kib!” indicated, at minimum, the presence of what researcher Madeline Burghardt, in Broken: Institutions, Families, and the Construction of Intellectual Disability, refers to as a culture of roughness. In a world where the residents of the school had no access to the outside world, no recourse, and often little language to even articulate mistreatment or neglect, abuse could easily have been normalized, as it was at so many similar total institutions. Even if she had not been abused herself, Martha might well have been harmed by witnessing the brutalization of others. How lucky she was in leaving the school when she was fifteen, before she became an adult, for all the available evidence indicates that adults were treated the worst. And how lucky that she was a girl, for it seems that things were often far worse for the boys in such institutions, since their caregivers were often former soldiers who had been brutalized by their war service.
I now realized that the ways we had viewed my sister, the ways society had viewed my sister, had been equally violent and were related to the violence perpetrated in the hospital schools. Our psychic violence, our insistence on the normal as the only life worth living, had created an environment that enabled the physical violence and abuse of power that harmed so many. Our prejudice had unnecessarily isolated “the disabled” and erased this violence from our view.
That day, Mark and I drove around the entire complex three times, looking at every building, mesmerized and astounded by the scale of it all. To be there again was to know that I had actually been there as a child, that it was not a figment of my imagination, as it has so often seemed to be. What had tormented me, what had been locked away in a corner of my mind and haunted me for so many years, was still there, swaddled in snow, set off by the dark shapes of the leafless trees, real. I wasn’t crazy. It had really happened.
That day I revisited the fairy hill and undid the spell. Martha was no longer there, and I knew I need never go back again. Now she would always rest with me.
Excerpted with permission from A World without Martha: A Memoir of Sisters, Disability, and Difference by Victoria Freeman, 2019, Purich Books, an imprint of UBC Press, Vancouver and Toronto, Canada.
Thank you so much for this beautiful series. I am looking forward to reading the book once I get it!
Thank you this was a good read and relatable to my relationship with my son who has downs. I want to be consciously giving opportunities to hear his voice