“Lilou is the story of an unusual older brother. Who doesn’t fit into any boxes. Who is outside the box. Who doesn’t see the world the way other people do. Who doesn’t talk. This big brother is mine. And this is our story.”
For five years, Lucie Hodiesne Darras photographed her brother Antoine, known as Lilou, who suffers from a severe form of non-verbal autism that prevents him from communicating with words. The result is a tender and powerful book, a poetic plunge into the intimacy of a brother like no other.
Lucie Hodiesne Darras sees herself as part of a humanist tradition in photography. “My aim is to bring out the best in people, to capture what they exude. By turning her lens towards her brother, the young French photographer hopes to renew our perception of autism, whose broad spectrum and varying degrees of disorder are still poorly understood today.
Lilou is an insider’s view of the condition. Through a series of black-and-white photographs, the reader follows Antoine through his daily life and the various rituals that mark it out. Little by little, his personality is revealed, as are his tastes, particularly for motorbikes, and his moods – joy, frustration, calm – conveyed by his highly expressive face and the gestures of his nervous, affectionate hands.
The photographer paints a portrait of great delicacy. But more than a book about her brother, Lilou is a book made with her brother. Her brother took an active part in the shooting. He sets the tone and guides the session for several shots. “It was as if he was using this new language to convey what he wanted to say”, says Lucie Hodiesne Darras, before concluding: “When the series came together, he gave the impression of being more serene: at last, he was being heard, highlighted as he really was.
Lilou is a deeply moving book, not so much for the disability it highlights as for the strength and purity of the love it radiates, the family bond and the tenderness of a person for whom every emotion is expressed instinctively. In this superb tribute to her brother, Lucie Hodiesne Darras shows us the human face of autism.
Lucie Hodiesne Darras – Lilou
Fisheye Editions, 2023
Foreword by Minh Tran Huy, introduction by Lucie Hodiesne Darras & afterword by Benoît Beaume
170 x 240 mm, 160 pages
Available in good bookshops and online