In recent days, a questionnaire proposed, and then withdrawn, by the municipalities of Nettuno and Rome to assess the stressful situation of people who care for family members with disabilities has been discussed and criticized by activists and associations in the sector. The criticisms have arisen for some questions such as “how much resentment do you feel towards your disabled child?” or “how ashamed of your family member?”, which seem to trace the stress back to an internal personal situation rather than to the difficult context, also linked to the lack of institutional support, in which families find themselves.
It is true that if a phenomenon is not measured it is not possible to know it and promote solutions to deal with any problems, but the way in which data is collected is also important and can define the type of response that politics gives to the needs of families. and the community.
As Simona Lancioni explained in Informare un’h, the online magazine of the Gabriele and Lorenzo Giuntinelli center in Peccioli, the questions were based on scales of care load created in the field of care for the elderly in the 1980s and on a medical model of disability, which considers it a physical, mental or sensory problem of the single individual, surpassed today by a bio-psycho-social model. The latter no longer considers “disability as an individual and private matter, but the responsibility of society”.
Beyond the case discussed in these days, it is necessary to fill the data gap on disability in Italy on all levels, as reported by Francesca Fedeli, of the Fight the stroke foundation, as part of the Disabled data campaign. Fedeli has started, together with other associations, a mapping of data on disability in Italy, which are incomplete, out of date and difficult to access. To know the exact number of disabled people in our country, or to find out how the number of 3.15 million people found in online sources has been calculated, today we need to make “a journey of 85 clicks” between tables that do not open and sites that are no longer accessible. Without data, “it is difficult to give voice to the battles to claim the rights of a community that is still marginalized or poorly told”, reads the campaign website. In addition, the type of data we collect on a phenomenon or situation influences the way we tell it: to overcome stereotypes it is necessary to ask and ask the right questions.