Marine Area: “Feeling like a factory defect, a burden to manage, is excruciating”

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A few days have passed since the dissemination (and subsequent withdrawal) of the famous questionnaire that the Municipality of Nettuno submitted to families who have dependents people with disabilities in order to access the funds of the Lazio Region, yet I do nothing but think about it.

“From zero to four, how ashamed are you of your family member? How much resentment do you feel towards him? How uncomfortable do you feel when you have friends at home? “these are just some of the questions contained in the questionnaire on which a heated discussion was born.
The form used by the Municipality of Nettuno is based on the Caregiver Burden Inventory (CBI), a 1989 test still in use internationally to determine the degree of stress of family members of disabled people. I have tried to imagine how my parents would have felt to have these questions delivered, and I’m pretty sure the only shame they would claim to feel is that of institutions using such questionnaires to assess eligibility for financial support.

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It does not surprise me, therefore, that many families have considered those questions a real violenceWhat I did not expect, however, was the reaction of some people who considered the controversy excessive, legitimizing the need of caregivers to express certain emotions. Beyond the fact that using an outdated questionnaire with a language that is not in line with today’s socio-cultural changes, and moreover with purposes other than those for which it was conceived, it really seems to me a meaningless thing; but above all I am sorry to note how much it is not yet understood that the feelings of shame towards family members with disabilities arise from an archaic stigma towards all individuals who have a body considered non-compliant – in form, function or behavior – with the canons of the majority.

These emotions should not be repressed, of course, but elaborated in the right place with professionals in the psychological sector in order to be resolved. Care work should be a responsibility of the state. Pouring all the care work into the family means denying the self-determination and independence of people with disabilities, and fueling anger, frustration and a sense of abandonment in family caregivers. Furthermore, I regret to note that those who approved these tests where (apparently) we are concerned with assessing the level of stress of the caregivers, did not think about the sense of guilt that such a system instills in people with disabilities. Being considered (more or less explicitly) a burden for family and environment is frustrating and it is an aspect that we have to face in every moment of our life. Feeling like a factory defect, a burden to manage, is excruciating, and I would like the institutions not only to take note of this, but to intervene by providing adequate tools in a respectful and conscious manner. But as long as assistance is still considered a family vocation and disabled people a boulder to carry on their shoulders, as long as the voice of a community that claims disability as a question of identity will continue to not be heard,
I fear that we could hardly see a concrete change.

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Source: Vanity Fair

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