My daughter Simone was the first person I met with Down syndrome. I was forty-two years old. This is an astonishing statement for many reasons, but primarily because I had worked as a nurse in downtown Toronto, Canada for fifteen years. When Simone was born, the delivery room went silent. The presumed tragedy of disability medically avoidable, had permeated the room. Simone was not a child--she was a child with a disability. The chasm was wide. I remember being as devastated by her diagnosis as the rest of our family and friends, but we got on with our lives, largely because of our four-year-old twins. We loved Simone; we didn't love Down syndrome. She needed a lot of extra help to coordinate her muscles to crawl, walk, and eventually tie her shoelaces. She endured weekly visits from the physiotherapist, the early interventionist, and appointments with a myriad of specialists at the local children's hospital. It is undeniable that Simone is different, but I am also struck by how her way of being does not align with the stereotype I held previously. She is emotionally astute, a joyful child whose different way of knowing the world is creative, generative, and meaningful. There is a disconnect between our lived reality and the socially prevalent conceptions of Down syndrome.
I began this comics project with the intention to amplify Simone's voice, to share her intellectual, affective, and communicative differences, and significantly, to share without speaking for her. Feminist scholar Linda Alcoff outlines the issues around speaking for others, in particular speaking for those who are or have been historically silent (6). The privilege of the speaking voice over another results in silences and erasure. Normative forms of communication dominate the sociocultural landscape, and thus the voice of a person with Down syndrome, who might be less vocally articulate, speak more slowly or with a focus that does not follow a logical conversation, may be dismissed. Artist, curator, and disability scholar Amanda Cachia writes,Developmentally disabled people are able to engage in modes of dialogical or socially engaged art practices in ways that express their way of knowing and understanding the world. These practices are particularly effective insofar as they emphasize the always-already inter-subjective and inter-corporeal nature of all embodiment. (122-23)
In choosing a platform, I landed on a comics practice for its dialogical structure and unique ability to showcase subjugated knowledge and to serve as visual witness to a life lived outside normative lines. I drew a four-panel comic every day beginning when Simone was ten years old, to the accumulation of 1095 pages. I distilled our exchanges and documented the mundanity of our life together. Over time, this daily practice became part of the fabric of our family's life.
The element of time was integral to the project. The commitment to a daily entry over three years worked on many different levels. I found shorthand ways to draw, and my rusty drawing skills...