Abitare inclusivo per un’utenza specifica affetta da distrofia muscolare di Duchenne [Inclusive Living for Specific Users suffering from Duchenne Muscular Dystrophy]

In Ferrara within the Department of Architecture, a team of researchers has been dealing for years with accessibility and inclusion of spaces, services and interfaces. The paper aims to describe the fruitful and intense collaboration – that has led to the funding of three research grants for PhDs in Architectural Technology – established between the Department and the Parent Project Onlus: an association composed by parents of children suffering from muscular dystrophy of Duchenne and Becker. Specifically, one research was aimed at trying to solve a problem that many families were increasingly requiring to the Association: home accessibility. The lack of a legislation that meets the specific spatial needs of people suffering from Duchenne, in addition to the not shared and widespread knowledge of a universal design, caused difficulties to both families and professionals in dealing with housing transformations able to guarantee their users the current and, above all, the future accessibility and inclusion. The research has been developed following a Human Centered Design scientific methodology, starting from listening to people, their needs and expectations. In doing so, we came to the definition of an informative tool published in 2016: a two-sided manual that talks about the same topic using languages, terms and references suitable for different users. In this way, they can together compare and define solutions more suitable to solve problems that would otherwise be very difficult to hypothesize, visualize and define. The collaboration has continued over the years; for example, among other activities, the definition and development of a dedicated web platform is underway, through which families can interface directly with experts to obtain targeted answers regarding the accessibility of their home.