Second name: Huntington

From June 29th to July 30th 2017 Triennale Design Museum, AICH Milano Onlus and Huntington Onlus will present the exhibition Secondo nome: Huntington (Second name: Huntington) the last of a series of initiatives that for over a year have involved families, designers, biologists, researchers and Milanese fablabs/makerspaces, all invited to get involved and build a network to reflect together on this disorder with a view free from the taboos, stereotypes and prejudices too often surrounding Huntington disease. A disease that fate gives to individuals like a “second name”: a family inheritance that from that moment on accompanies the patient becoming an integral part of his identity.

Aimed at spreading information and raising awareness on the issue, the exhibition contributes to shedding light on this rare disease for which there is still no cure.
Huntington disease (scient. Còrea Major) is an inherited degenerative disorder of the Central Nervous System affecting people in the prime of their life (generally patients aged between 30 and 50) changing their daily life, cognitive capacities and autonomy completely, being characterised by pathological involuntary movements, serious behaviour alterations and a progressive cognitive decline.

Its impact is not irrelevant: it is estimated that in Italy 150,000 people are directly or indirectly affected by Huntington disease. Indeed, this disorder is not a personal problem: it affects a single person but it quickly and naturally becomes a family issue. The thoughts, expectations, dreams of everyone are inevitably involved, absorbed, questioned without any choice just like the space, time and home.
With this initiative, for the first time the design world is called to talk about Huntington disease imagining products designed for the sick persons yet usable by all.
This approach changes the perspective normally characterising the making of products for disabled people: the exhibition gives birth to a varied microcosm of options aimed at improving the quality of life of people affected by Huntington disease and of their families – often their main, if not their only caregivers – through a design sensitivity proposing functional products accessible to all, making daily life easier and going beyond the conventional view of disability as “something that must be fixed”.

The exhibition develops in two sections: one dedicated to the projects that won the under35 competition “…ma così è la vita! Junior design contest”, the other focusing on projects by designers like Alessandro Guerriero, Lorenza Branzi and Nicoletta Morozzi, Lorenzo Damiani and Brian Sironi among others, called to deal with the instinctive gestures of the patients and with their daily energy facing various domestic situations.

The designers reflected on Huntington, on the psychological and practical implications of daily life and on a diversity that, in different ways, each of us might happen to face throughout our lives. Indeed, the projects exhibited respect the needs of this disease but talk about gestures, feelings, failures, fears, hopes and universal challenges.

Davide Crippa, curator of the event, says: “these are stories of everyday life, fragments of family routines on edge between courage and fear of the present, telling us about ordinary but sometimes insurmountable actions; these are problems to handle with care, a world of disabilities that fights carelessness and codes of normality that must now be questioned; these are moments, fears, fleeing nudities; these are attempts to be autonomous and claims for happiness; stories of care and love, of losses and achievements, of fear and relief. These are projects like ‘fragile stories’ created to give shape to a manifesto for the weak project, a manifesto for Huntington disease”.

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