Living with West Syndrome

Fabiola Cedillo's first self-published book is a visual universe where her sister Tita, who suffers from West Syndrome, is the main protagonist. 

Fabiola Cedillo's first self-published book is a visual universe where her sister Tita, who suffers from West Syndrome, is the main protagonist. 

"What is life? A madness. What is life? An illusion, a shadow, a story. And the greatest good is little enough; for all life is a dream, and dreams themselves are only dreams." Calderón de la Barca talks about the perception of reality in "Life is a dream" first published in 1635 - it is a philosophical allegory regarding the human situation and the mystery of life. One of the major conflicts of the play is the opposition between king and prince, which parallels with the struggle of Uranus vs. Saturn or Saturn vs. Jupiter in classical mythology. This struggle is a typical representation of the opposition in baroque comedy between the values represented by a fatherly figure and those embodied by the son.

The perception of reality and family are universal themes which have been shaped by the human condition since the very beginning. These topics are approached by Fabiola Cedillo in her first self-published book titled "Los Mundos de Tita" (Tita's world) which came out this year. A very interesting visual story loaded with biographical elements.

Cedillo frames this book around the relationship with her older sister, Tita. Tita suffers from West Syndrome, which consists of a serious and rare brain disorder that generates short, axial muscle contractions; this produces psychomotor retardation with pervasive development disorder. Some neurologists agreed that the syndrome later degenerates into the so-called Lennox Gastout, which is a childhood epileptic encephalopathy with mental deterioration and therapeutic resistance of great severity. As Cedillo writes at the end of the book: "Tita would need rigorous full time attention and much medication for the rest of her life."

The book has the form of a children's adventure book: thick carboard and glossy paper, rounded corners, bright colors, friendly typography and a pink scribble graphic on the cover. The turquoise end paper (inspired by the door frames in her house) show some duotone family pictures of Tita when she was young. On the title page, we can see a dolls house, a metaphor for the constructed domestic reality awaiting later in the book.

The book starts with some inside views of the house where Fabiola and Tita live together. Then we are introduced to Tita, but she is not a child anymore. Later an insert, which seems to be a letter from a Doctor stating that Tita's life will be conditioned by the regular consumption of anticonvulsive medicaments as well as the need of having her constantly under pediatric control. From there on, the visual narrative becomes a little bit ambiguous, almost like we enter into Tita's mind and the world she inhabits daily. We see some sculptures, catholic iconography, family scenes, hospital scenes… which sometimes create a surreal mood, elevating Tita's condition into an unique form of perception.

But this is all loaded with biographical elements, the photographer Fabiola Cedillo is also embedding herself in the narrative turning Tita's world into her own world. The images are windows into new realities, new states of mind; emotional and sensorial. Sometimes dark and uncanny, but there are also moments of celebration. The book includes a narrative break adding other visual elements but this is probably something better to discover as a reader. 

I believe that photography is a more interesting medium to deal with reality rather than illustrate it. A medium that helps us to take the idiosyncrasy of our lives to a different level, a meta level, where we can step back from our determined roles of sisters, brothers or parents… and self-reflect about their meaning of it through images. Fabiola's work is strong, challenging and personal.

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You can buy Los Mundos de Tita here.

LOS MUNDOS DE TITA by Fabiola Cedillo

ISBN 978-9942-21-917-6 

Self-published, Ecuador, 2016

Editing and design: Fabiola Cedillo y Tono Mejuto

Hardcover 

96 pages

22 cm x 22 cm

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Alejandro Acin is director of IC-Visual Lab, an organization based in Bristol (UK) that aims to promote and produce contemporary photography through a series of events and commissioned projects. IC-Visual Lab organises Photobook Bristol, an international festival for photobooks in Bristol.