IThere is a world that very few know about, that of people with a severe disability, either because they were born that way, or because an incident in life has made them extremely vulnerable. We are talking here about people with an almost permanent need for help in all acts of daily life. These acts which seem so simple to able-bodied people. For them, staying clean, eating, moving around, making themselves understood, are more than challenges: all these acts are impossible without help, either from a “caregiver” (often a parent), or from a professional.
The latter fall under so-called “autonomy” professions. But these are rather the professions of extreme dependence, even if part of the work consists of imagining how people can participate, choose and express themselves. Because often only an intimate knowledge of infraverbal expressions can make it possible to decode them.
This extraordinary world also requires a lot of commitment and human resources, both in quantity and quality: these people are disabled 365 days a year, 24 hours a day, with the work constraints that go with it.
In addition, certain educational or medical protocols must be carried out rigorously, and in the same way, in the family and in an institution. The quality of support and the limitation of behavioral problems depend on it. However, for several years, people with severe disabilities have been forgotten by public policies.
European and UN criticism
There certainly exists an “inclusive” disability policy, which accelerated very significantly during Emmanuel Macron’s first five-year term. It was a question of responding to European criticism and the UNpartly based on our system considered too “institutional”, even “carceral”.
But from an inclusive policy which could, should, have been differentiated, nuanced according to the degree of dependence of people, we have switched to an “inclusive” ideology, which no longer considers, and even refuses, institutional responses. Behind this “inclusiveness”, there is a denial of great vulnerability: there would be no disability, but particularities, specificities, to which the acceptance of differences and the openness of each person would be the obvious and sufficient answers. .
However, for the people we are talking about here, dependent for all the acts of daily life, this ideology does not work: caregivers also have the right to have a life, and may one day disappear.
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