Désirs et représentations des désirs des personnes avec déficience intellectuelle

IF 0.5 4区 医学 Q4 PSYCHIATRY
Barbara Smaniotto, Marion Mauran-Mignorat, Tamara Guénoun
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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.</div></div><div><h3>Objective</h3><div>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. 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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. 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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.</div></div>","PeriodicalId":7992,"journal":{"name":"Annales medico-psychologiques","volume":"183 5","pages":"Pages 473-480"},"PeriodicalIF":0.5000,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Annales medico-psychologiques","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0003448724000131","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"PSYCHIATRY","Score":null,"Total":0}
引用次数: 0

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.
智障人士的愿望和愿望表述
本文是法国一项创新研究项目的成果:defparent——智力残疾与亲子关系;为成人提供的替代性支助服务。这是心理学和社会科学的定性研究。本研究聚焦于法国居住在护理院的智障成人的养育意愿。虽然每个人,无论智力残疾与否,都应该能够自己选择,但在这个群体中,成为父母的愿望似乎被边缘化了。该研究项目的目标是:1。了解生活在医疗社会机构中的智障人士在情感生活和性生活方面的愿望以及他们对孩子的愿望,以及他们在这方面对支持的需求;2. 识别那些与这些人一起工作的人关于他们的情感和性生活以及他们对父母的渴望的表现;3. 为专业人员制定具体的培训课程和支助用户情感生活和性生活以及生育计划的替代办法。目的研究第二个研究重点:探讨家庭和专业人员对居住在医疗社会护理院的智障人士的恋爱、性、婚姻和父母愿望的表达。本研究的主要目的是评估护理机构提供的支持网络对居民的支持。他们如何使伴奏适应他们所遇到的各种情况?他们是否接受并尊重居民做出理性选择的可能性?方法采用两种不同的方法:与7名家庭照顾者(父母或姐妹)进行访谈以确定生活史。然后,两个焦点小组对在养老院工作的专业人员进行了照片表情分析。采用叙事分析法对两者进行分析。结果访谈的主要观察结果是,当被问及孩子或兄弟的情感生活和欲望,尤其是性欲时,他们感到非常惊讶。在他们看来,他们现在已经成年的孩子或兄弟没有这样的愿望,尤其是在想要孩子的时候。例如,我们遇到的家庭从来没有和他们已经成年的孩子讨论过想要孩子的愿望。同样地,想要像情侣一样生活或结婚的愿望有时会得到承认,但很快就会被抛诸脑后。这些家庭报告说,他们有时不得不向孩子解释,他或她不能结婚,主要是因为他或她缺乏自主权。总的来说,他们认为自己已经成年的孩子是无性恋。他们更担心自己的孩子可能会成为某种性侵犯的受害者。因此,性欲和夫妻生活被视为需要处理的额外问题。在这种情况下,对这些家庭来说,想要一个孩子的愿望仍然是不可想象的。在专业方面,重点是找到适应某些居民非典型性取向的方法的困难。专业人士似乎陷入了两种矛盾的态度:渴望开放,同时他们又试图限制某些做法,理由是他们在保护住院医生,也在保护其他人免受住院医生的伤害。专业人士抱怨居民对亲密关系和性问题缺乏了解。矛盾的是,在处理居民的“常态化”要求(如结婚或生孩子)时,提供日常支持的不适似乎最大。而非典型的或自体性的性要求似乎更容易被容忍,如果不能被容忍的话。因此,虽然大多数专业人士都认识到欲望的真实性,包括对孩子的渴望,但他们并没有得到真正的支持。最后,专业人士似乎没有意识到管理社区生活的规则的矛盾方面,这些规则倾向于控制,如果不是压制,居民的性和欲望——即使性权利是生活项目的一个组成部分。讨论对于家庭和专业人士一样,居民享有情感生活的权利得到了承认,但在很大程度上仍然受到阻碍,或多或少是隐性的。对于家庭来说,他们已经成年的孩子的性取向仍然是一个盲点,在很大程度上被忽视了。在专业人士中,这种性行为可以被表达出来,如果它被限制在一个单独的实践中,在这个实践中,受试者放弃了他或她对主体间关系的渴望。在这两种情况下,性都被认为是日常生活管理问题的根源。这些观察结果使我们得出结论,居民在意识到自己的性取向和作为夫妻生活的计划方面遇到的部分困难源于为人父母的问题。 虽然智障人士对孩子的渴望没有被禁止或被认为是不可接受的,但这首先是未被考虑和不可想象的。从这个意义上说,不能把它设想为一种可能性。我们假设,这种对生育的基本禁止在观察到的限制中发挥了作用,特别是在机构中,在性领域;为人父母是积极性生活的结果之一。这些限制将导致一个控制系统,控制居民的所有形式的欲望,无论是关于食物、遭遇还是爱情。其目的是规范和约束这些欲望,以减轻所谓的溢出风险。这种对性和育儿欲望缺乏理解的情况,往往发生在各种主角——家庭成员、专业人士——不知情的情况下,甚至住院医生自己也不知情。使他们无法发展情感生活和性生活。这一未被承认的事实反映在机构在提供关于亲密关系和性的长期教育方面所面临的困难上。对于残疾人来说,它转化为禁止生育的内化,这反过来又抑制了婚姻和父母欲望的表达,甚至性欲。结论在医疗社会福利院生活的智障人士的性欲望和父母欲望的问题揭示了一种旨在收容和再教育他们的制度体系的持久性,而不是帮助他们应对残疾。结果,关于这些人的性生活和生育欲望的问题在法国的制度中基本上没有得到解答,间接地使这些对象处于无知状态,处于婴儿期状态- -总之,处于残疾状态。此外,智障人士有可能将围绕其情感和亲密欲望的污名内化,从而引发心理困扰。强调用于使这些愿望不可见的机制可以帮助支持网络重视多样性。在这些问题上对支助网进行培训将有助于克服体制暴力,这种暴力是由于支助网对中度至重度智力残疾者的性行为和养育子女的愿望有先入之见而造成的。他们是否准备好并有能力提供一个系统,赋予主体权力,使他或她能够做出自由的、知情的选择?今天,如何最好地处理这些问题似乎有必要成为真正支持的主题,使有智力残疾的人能够表达和试验他们的愿望和愿望,如果他们愿意的话,即使这意味着他们必须能够哀悼他们并进入一个放弃他们的一些项目的过程。
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来源期刊
Annales medico-psychologiques
Annales medico-psychologiques 医学-精神病学
CiteScore
1.30
自引率
33.30%
发文量
196
审稿时长
4-8 weeks
期刊介绍: The Annales Médico-Psychologiques is a peer-reviewed medical journal covering the field of psychiatry. Articles are published in French or in English. The journal was established in 1843 and is published by Elsevier on behalf of the Société Médico-Psychologique. The journal publishes 10 times a year original articles covering biological, genetic, psychological, forensic and cultural issues relevant to the diagnosis and treatment of mental illness, as well as peer reviewed articles that have been presented and discussed during meetings of the Société Médico-Psychologique.To report on the major currents of thought of contemporary psychiatry, and to publish clinical and biological research of international standard, these are the aims of the Annales Médico-Psychologiques.
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