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How will children with disabilities live after the death of their parents?


This post is taken from the weekly newsletter “Darons Daronnes” on parenthood, sent every Wednesday at 6 p.m. To receive it, you can register for free here.

Have you ever thought, with apprehension mixed with hope, of the day when your child would no longer need you? What if you knew for sure that this day would never come? This is what two fathers wrote to me recently, in response to one of my previous newsletters on the possible end of the “job of parent”. They are each the parent of a child with a disability. Mr. Guérin, in the Bordeaux region, explains to me as follows: “What is cruel is that we carry within us the double anguish: that common to all parents (the death of their child during their lifetime), but also that of our own death, since the ‘job’ does not being not finished, we have no right to death. We are like the artist who cannot die until he has completed his masterpiece in progress. Blissful parent of love, not entitled to eternal nothingness, gaping anguish. » From Vanves (Hauts-de-Seine), Jérôme Marminat writes to me: “Parent of two beautiful cherubs, including one Sarah, our local Martian, I often worry that one day she will also have to be independent. Fear invades me sometimes and I even imagined for a moment having a third child to provide for the future needs of our daughter…”

“Major anxiety”

I had never thought about it. How can we age in peace when we don’t know in what conditions our child will survive after us, and if others will take care of him well enough? I phoned Bénédicte Kail, national family education adviser for the APF France Handicap association, who was not surprised by my question. “It is a major anxiety for the parents of disabled childrenshe confirmed. The “after us” was even the theme, two years in a row, of the National Parents’ Days, which brought together the elected parents of our association. » In 2007 and 2008, in fact, these parents evoked the life of their children after their death, which gave rise to the development of a small memo, available herewhich lists a large number of both material and emotional questions to ask yourself.

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The acts of these National Days are online here. We discover both the breathtaking degree of legal and administrative knowledge of these people, forced to look early on the protections offered by the law; and the abyss of their anxieties, sometimes concentrated in striking everyday details. Jacky Pioppi (died in 2021), “father of two men, one of whom suffers from cerebral palsy and lives in a medicalized foster home”summed it up in 2007: “If a young girl’s orthopedic shoes don’t fit her, and the orthopedist insists on putting them on, the mother doesn’t say anything, takes the shoes and puts them in the trash in front of the specialist. She simply says, “Redo my daughter’s shoes.” Who will dare to do it when the mother is dead? »

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