In 2008, I found myself drawn to themes involving individuals who are exposed to environmental influences and cultural pressures which propagated a sense of ‘otherness. I began to research post-traumatic stress and its effect on identity. In my work, themes and projects are often the result of a great deal of inquiry, research, experimentation, synthesis and analysis of experiences.
“In Hiding” represents a personal eight-year journey of my experiences with several fetal alcohol syndrome (FAS), and fetal alcohol exposed, or fetal alcohol effected (FAE) children, and my subsequent research to uncover the facts about this disorder. However, I found it difficult to grasp an all-encompassing, conclusive understanding as this condition is exasperated by a multitude of variables. Many professionals working with these complications have grouped both FAS and FAE under one umbrella term, fetal alcohol spectrum disorder (FASD).
My personal experience began in 2004, when my husband and I felt compelled to become caregivers for a young teen who had become especially dear to us. Although the nine-month journey ended suddenly, but very well, our time together was still fraught with great difficulties, mostly stemming from having to deal with the community surrounding the child. I gained a huge appreciation of the complexities involved with these disorders and just how insidious this hidden disability really is.
Generally, FASD individuals are expected to adhere to our societal mores and standards, an impossible demand for someone whose brain has been physically damaged. The alcohol, passed undiluted from mother to fetus, acts like a solvent on brain cells, causing irreparable damage and altering brain functions. The irony is that FADS is completely preventable. FASD affects as many as one in every one hundred births, across all races and classes yet, our Canadian stereotypes still associates this problem solely with poor or First Nations alcoholic mothers. FASD among the middle and upper class is simply not discussed and there are indications that we simply labeled it as something less shameful.
Shame and failure is the baggage that attaches to the child from birth. Shame that their mother drank, shame that they can never be cured of this disorder, and shame that they fail to live up to societies’ expectations. This failure shadows them every day of their lives. David Boulding, lawyer and advocate for FASD, explains that this failure lives within every cell of their body. However, who is in the position of casting blame or judgment?
Alcohol is a socially accepted drug, as long as we don’t drink and drive. There are warnings that we should not drink when pregnant, although fifty percent of women in Canada drink, and almost fifty percent of all pregnancies are unplanned. Most of us know that we shouldn’t drink too much, but in cases of FAE the right question is, ‘how little does it take?’ The biggest misconception is that the mothers of these children must have been alcoholics, when in fact it can simply have been one drink, in the early stages of the pregnancy.
The inspiration for this project has been the work of the South African photographer Pieter Hugo, whose work in turn has been referenced to Diane Arbus. His typology of people afflicted with albinism forms a stark look at ‘otherness,’ which constructs unsettling portraits for the viewer to contemplate. However, with FASD this ‘otherness’ is not as overt, as it often leaves only subtle outer physical markers that can even disappear in later years. Their ‘otherness’ is on the inside. Therefore, my approach to my subject differs greatly from Hugo, in order to construct the illusion of conformity these individuals work so hard to achieve, and to echo their relationship with a society that fails to understand that disabilities cannot always be seen or immediately detected.
‘In Hiding’ I strived to find the individuals voice in the work, paradoxically, through silence. They tell their own stories through the repetition of eye contact and avoidance, so that we may find departure from the rhetoric of ‘otherness,’ and a point of entry that celebrates humanity and embraces difference.
Addendum 2012
Most of the children photographed for this project have not yet reached adulthood. For their privacy and protection the portraiture will not be uploaded to the internet.
In 2007 I tried to tackle this difficult subject matter in a way that still protected the children’s identities. I undertook my first foray into producing a video, which was not successful in conveying my message. I abandoned the project, but the experience informed The Crosses She Bears and the on-going project Dis Ease.