Désirs et représentations des désirs des personnes avec déficience intellectuelle

Abstract

Background

This article is the result of an innovative research project in France: DEFIParent – Intellectual Disability and Parenthood; alternative support services for adults. It is a qualitative study in psychology and the social sciences. This research focuses on the parenting desires of adults with intellectual disabilities living in care homes in France. While every individual, no matter their intellectual disability, should be able to choose for themselves, the desire to become a parent seems to be marginalized within this population. The objectives of the research project were: 1. To understand the desires of people with intellectual disabilities living in medical-social establishments concerning their emotional and sexual life and their desire for children, as well as their need for support in this area; 2. To identify the representations of those working with these individuals regarding their emotional and sexual lives, and their desire for parenthood; 3. To develop specific training courses for professionals and alternative approaches to supporting users’ affective and sexual lives and plans for parenthood.

Objective

This article concerns the second research focus: it explores the representations of families and professionals concerning the amorous, sexual, conjugal and parental desires of people with intellectual disabilities residing in medico-social care homes. The principle objective of this study is to evaluate the support offered by the support network available to residents of care establishments. How do they adapt their accompaniment to the diversity of the situations they encounter? Do they accept and respect the possibility of a reasoned choice on the part of the residents?

Method

Two distinct approaches were used: interviews to determine life history were carried out with seven family caregivers (a parent or sister). Then, two focus groups using an analysis of photo-expressions was conducted with professionals working in care homes. Both were analyzed with a narrative analysis method.

Result

The main observations from the interviews with the families were that they were quite surprised to be asked to talk about their child's or brother's emotional life and desires, especially sexual desires. In their view, their now-adult child or brother has no such desires, especially when it comes to the desire to have a child. For example, the families we met had never discussed the desire for a child with their now-adult children. Similarly, the desire to live as a couple or get married is sometimes acknowledged, but quickly brushed aside. The families reported that they have sometimes had to explain to their child that he or she could not marry, notably because of his or her lack of autonomy. On the whole, they perceived their now-adult child as asexual. They were more concerned about the possibility of some sort of sexual aggression that their child might be the victim of. As a result, sexual desire and life as a couple are seen as additional problems to be managed. In this context, the desire for a child remains unthinkable for these families. Concerning the professional side, the emphasis is on the difficulty of finding ways to adapt to the atypical sexuality of certain residents. Professionals seem to be caught up in two contradictory attitudes: a desire for openness, while at the same time they seek to restrict certain practices on the grounds that they are protecting the resident as well as protecting others from the resident. Professionals complain of the residents’ lack of knowledge about intimate and sexual issues. Paradoxically, discomfort in providing day-to-day support seems to be greatest when dealing with “normalized” requests from residents, such as getting married or having a child. Whereas more atypical or autoerotic sexual requests appear to be more tolerated, if not tolerable. So, while the reality of desires, including that for a child, is recognized by most professionals, they are not really supported. Finally, professionals don’t seem to realize the paradoxical aspect of rules governing community living, which tend to control, if not repress, residents’ sexuality and desires – even though the right to sexuality is an integral part of the life project.

Discussion

For families and professionals alike, the right to an affective life for residents is recognized, but remains largely obstructed, more or less implicitly. For families, the sexuality of their now-adult child remains a blind spot, largely ignored. Among professionals, this sexuality can be expressed if it is limited to a solitary practice, in which the subject renounces his or her desire for an intersubjective relationship. In both cases, sexuality is perceived as a source of problems in the management of daily life. These observations lead us to conclude that part of the difficulties encountered by residents in realizing their sexuality and projects for living as a couple is rooted in the question of parenthood. Although the desire for children in people with intellectual disabilities is not forbidden or considered unacceptable, it is above all unthought of and unthinkable. In this sense, it cannot be envisaged as a possibility. We hypothesize that this fundamental prohibition of procreation plays a part in the restrictions observed, particularly in institutions, in the field of sexuality; parenthood being one of the consequences of an active sexual life. These restrictions will lead to a system of control over all forms of desire on the part of the resident, whether they concern food, encounters or love. The aim is to regulate and constrain these desires in order to mitigate the supposed risk of overflow. This lack of understanding of sexuality and parenting desires often occurs unbeknownst to the various protagonists– family, professionals –and even without the knowledge of the residents themselves. making it impossible for them to develop an affective and sexual life. This unacknowledged fact is reflected in the difficulties faced by institutions in providing long-term education on intimacy and sexuality. For the disabled person, it translates into the internalization of the prohibition of procreation, which in turn has the effect of stifling the expression of marital and parental desires, and even sexual desires.

Conclusion

The question of the sexual and parental desires of people with intellectual disabilities living in medical-social care homes reveals the persistence of an institutional system that aims to contain and re-educate the person, rather than to help them cope with their disability. As a result, the questions posed concerning the sexual lives and childbearing desires of these individuals remain largely unanswered in the French system, indirectly keeping these subjects in a state of ignorance, in a state of infancy – in short, in a state of disability. In addition, people with intellectual disabilities are at risk of internalizing the stigma surrounding their affective and intimate desires, inducing psychological distress. Highlighting the mechanisms used to render these desires invisible can help the support network to value diversity. The training of the support network on these issues would help to overcome the institutional violence that is a result of their preconceptions about the sexuality and parenting desires of individuals with moderate to severe intellectual disabilities. Are they ready and able to offer a system that empowers the subject, enabling him or her to make free, informed choices? Today, it seems necessary that the question of how best to deal with these matters should be the subject of genuine support, to allow people with intellectual disabilities to express and experiment, if they so wish, with their desires and wishes, even if it means that they must to be able to mourn them and enter into a process of relinquishing some of their projects.