When my daughter was born, I was told that she had the “physical markers” for Down syndrome. A few days later, the diagnosis of Trisomy 21 was confirmed with a simple blood test. Today, sixteen years later, Luigia is a lively teenager, yet these “markers” have grown with her, and her disability remains visible to the outside world. As we try to go about our ordinary lives in our community--getting ice cream after school, going grocery shopping or walking to the local library--I often catch people staring, gawking, or side-glancing at her, at us. Even though their gaze feels invasive, I perceive it as more questioning than judging, at least most of the time. With this on-going series REGARD, I am opening a window into our reality. To emphasize control over my message, these everyday scenes are meticulously set, lit up; they are staged and posed. The performers are my daughter and I. The portraits are purposefully developed in black and white, for by refusing the decorative and emotionally evocative element of color, I aim to maintain a distance between us and them. The composition of the photographs expresses routine, domestic acts in which I address the viewers directly: look at us bathing; look at us grooming; here we are at bedtime; this is us on a random day at the beach. In each scene, the viewers are plunged into the outside perspective. At first glance, it may seem that I am offering us as vulnerable prey to their judgement, yet in fact I am guarding our lives, and the viewers are caught gawking--my direct gaze at the camera. My series is basic in its concept: it shows a child, it shows a mother, it shows them living together and performing familial acts. Because I believe in the connective power offered by the depiction of domesticity, I hope that REGARD helps the audience rethink some of their assumptions about people living with disabilities and with this, that it finds a humble spot within the movement that helps people with disabilities gain visibility.
