The intimate life of people with disabilities, a taboo that lasts

For a knock on the door of his room before entering, Mohammed had to put a note there: “Small 1: Knock. Small 2: Wait for my answer. Little 3: If I don’t answer, we’ll see you later. “But despite this sign, the social workers of the medical establishment where he is welcomed in Draguignan, in the Var, regularly continue to enter without asking his permission. “It’s like opening the door to your house without knocking,” laments the forty-year-old, whose motor disability requires daily support.

Mohammed has been in a relationship for more than a year with a resident of the establishment. So to afford moments of intimacy, they are forced to adapt: ​​”She comes to my room often because we know when the educators are going to be passing through,” he smiles. However, respecting people’s privacy “begins by asking them for permission before entering their place of life”, recalls Astrid Simoneau-Planes, referent for relational, emotional, intimate and sexual life for the APF France Handicap association, in the Var.

The law of January 2, 2002 on the “right of users” enshrined the right to respect for the privacy of people accompanied within a social or medico-social establishment or service (ESMS). A principle reaffirmed three years later by the “disability” law of February 11, 2005. But if social workers have always been confronted with complex situations concerning the privacy of residents, they still have few resources to apprehend them. According to Astrid Simoneau-Planes, it was “the circular of July 5, 2021 which really kicked in the anthill”. The latter, created on the initiative of Sophie Cluzel, former Secretary of State in charge of disabled people, notably required reception structures to appoint “emotional and sexual life referents” in each establishment.

For the volunteer, who has been involved in these issues for ten years, the emotional and sexual needs of the people being accompanied are too often neglected within the accommodation structures. Also, these referents are destined to become a real “point of reference for professionals who do not always know how to apprehend certain situations”. “The structures do not really know where to start the work, confirms Fabrice Zurita, manager of IntimAgir Normandie, a resource center on the intimate, emotional, sexual life and support for parenting of people with disabilities. Experts have been talking about it for a long time, but on the ground, it’s more difficult to take action. »

Although training has multiplied since the 2021 circular, the latter “remain difficult to quantify”, admits Fabrice Zurita. In the meantime, if social workers are struggling to address the subject, “it’s because it sends them back to their own beliefs and representations,” he believes. “Professionals are sometimes afraid of opening a Pandora’s box and rekindling difficult life memories for residents,” also explains Nathalie Martinez, doctor in social psychology.

In this regard, there is no immutable rule. Each resident has their questions and difficulties. “How do you help a teenager born with an autism disorder to understand his feelings of desire and his bodily changes, when he cannot tell the difference between his body and that of others? “asks Nathalie Martinez. Since the educators are currently poorly trained, it is most often the psychologists and psychomotor therapists who help the residents to become aware of their bodies. behaviors of disinhibition in public,” adds Astrid Simoneau-Planes, who has been working for more than ten years in these structures to guide professionals.

While respecting residents’ privacy begins with a knock on their door, consent begins with asking a person “if they are OK with getting dressed”. Lisa (1) is 17 years old and lives in a motor education institute near Nantes. When Isabelle (1), a special educator, asked her permission to help her wash, she laughed. “You know, you don’t have to ask me,” wondered the teenager, who has never been used to being asked for her agreement before performing care procedures. However, “the construction of intimacy is done in adolescence, explains Isabelle, so I tried to make him understand that his body belonged to him”.

In order to free speech, the establishment recently organized a “quiz” evening on consent and sexual life. Recently, a teenager received at the motor education institute suffered inappropriate gestures from another teenager, but because of her memorization difficulties, she was unable to remember them. “Once we were aware of the situation, we had to remind the person who had not respected his privacy what consent was,” says the specialist educator.

Within these structures, issues of consent require increased vigilance on the part of the teams. Here again, the stakes vary according to the type but also to the degree of disability of the resident. In the Var, a young couple with trisomy 21 took several months to understand that they did not consent to the same thing. “Each time they tried to have an intimate relationship, the young woman ended up changing her mind and pushing him away very violently, when she had verbalized a ‘yes'”, assures Astrid Simoneau-Planes. A few weeks later, the specialized educators understood: “For her, having a sexual relationship meant kissing, but without going any further. “A long work then began to redefine the meaning of the words” and to be certain that she was consenting to start an intimate relationship “.

In France, the regional centers for inappropriate childhood and adolescence (CREAI), created in 1964 by ministerial decree, were among the first to break the taboos on respecting the privacy of the people being accompanied. Since 2014, the various branches of CREAI have been providing training to professionals on intimate life. Nathalie Martinez is the coordinator in Montpellier. For her, in the field, “things are moving in the right direction and establishments are increasingly asking to be made aware”.

For their part, the members of the IntimAgir system hope to go further than the designation of “intimate and emotional life referents” in each establishment. “If we only rely on the training of two people, the know-how to best respect the privacy and collect the words of the residents will be too fragile, fears Fabrice Zurita. The entire staff must be made aware, from the maintenance manager to the specialist educator. “The High Authority for Health has also taken up the issue by bringing together a working group to establish “recommendations for good practice”. These should be shared in 2024.

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