---
title: The Quality of Sexual and Partnership Life of Persons with Severe Mental Disabilities type: Article language: English published: 13 Mar 2013 updated: 13 Mar 2013 category: Psychology author: Stanislava Mandzáková source: https://www.prohuman.sk/psychologia/kvalita-sexualneho-a-partnerskeho-zivota-osob-s-tazsim-mentalnym-postihnutim
The publication offers a search for answers to the questions posed, which have prompted us to reflect on how we might help both professionals and the wider public to recognize their own responsibility and gain greater confidence in addressing issues of sex education for persons with severe intellectual disabilities.
INTRODUCTION
"The quality of a society can be measured by the way it cares for its most vulnerable and dependent members. A society that fails to care for them adequately is flawed." Adrian D. Ward
Writing about sexuality is no longer unusual today. Newspapers and magazines publish articles, books appear that discuss problems of marriage or sexual disorders and their overcoming, or describe how children become adults, what sexual activity is manifested in the process, how children are conceived, or how unwanted pregnancy can be avoided. In recent years, literature has emerged that provides information and guidance to every interested reader, differentiated by age categories and interests.
Sexuality and everything associated with it remains, however, despite all the efforts of experts, still shrouded in a veil of mystery and continues to be a sensitive and often unanswered question. We are still quite uncertain when we need to talk about it with children and adolescents, or when we need to help young people encountering their own sexuality and the opposite sex. Yet sexuality is a natural part of every person's life — it is a universal human characteristic that accompanies a person throughout their entire life.
The situation regarding the sexuality of people with intellectual disabilities is even more complex. Rules concerning their sexuality are often not the same as those that apply to the rest of society. The need of individuals with intellectual disabilities to form partnerships is similar to that of other people, but as L. Novosad (2009) emphasizes, the complexity of the problem lies in the fact that a person with an intellectual disability is constrained by society's negative attitude toward such interpersonal relationships. The sexual life of persons with intellectual disabilities is frequently regarded as undesirable, repulsive, even perverse — asexuality is expected of them from the outset.
In the area of sexuality of people with intellectual disabilities, numerous uncertainties prevail, which none of the involved parties often know how to address. Myths and prejudices persist in this domain, connected with misconceptions — that people with intellectual disabilities are non-sexual, or that they are "eternal children," or conversely, that they are sexually impulsive. In this regard, D. Štěrbová (2009) emphasizes that persons with intellectual disabilities are often not permitted expression in areas with sexual content. Every child has the right to understand their own development in an accurate and positive way, and to be able to fulfill it under dignified conditions throughout life.
Sexual needs, behavior, and expressions in this segment of the population, as among other people, vary widely. The incorrect attitude of society and, above all, of those responsible for their education (including sexual education) often only distorts them. In this work, we focus on the attitudes of those who are in daily contact with persons with severe intellectual disabilities and who are well acquainted with their needs, desires, and wishes — that is, on the professional staff of residential social service homes that serve this target group.
Despite the fact that sexuality is considered an integral part of personality and education in this area a natural right of every person, not all professional staff of residential social service homes are able to accept expressions of sexual behavior in persons with intellectual disabilities. Many of them perceive emerging sexuality as a complication, have reservations and fears about discussing it. Often their attitudes resist the natural process of maturation and growing independence, which can lead to emotional and sexual frustration and also significant social inexperience in persons with severe intellectual disabilities (Kozáková, 2004).
What barriers should the professional staff of residential social service homes overcome so that persons with severe intellectual disabilities can learn about human sexuality and express it according to their own needs? Is it fear, avoidance, denial, lack of information, an incorrect attitude toward sexuality?
The reasons are certainly varied and complex. The search for answers to the questions posed has prompted us to reflect on how we might help both professionals and the wider public to recognize their own responsibility and gain greater confidence in addressing issues of sex education for persons with severe intellectual disabilities.
The attitudes of professional staff of residential social service homes are only marginally mentioned in the professional literature. A nationwide study in this area has not yet been carried out. However, we believe that the attitudes and experiences of professional staff are important for creating a realistic picture of the desires and needs of clients with severe intellectual disabilities in the area of their sexuality and partnership life.
From the above overview, it is clear that the prerequisite for addressing this issue is the removal of barriers — not only external ones (social, economic, architectural, and communicational barriers that hinder partner selection and personal social integration), but also barriers and prejudices within ourselves.
The present monograph on the topic The Quality of Sexual and Partnership Life of Persons with Severe Intellectual Disabilities aims to analyze selected aspects of quality of life and identify some of the factors that determine them. The output is a proposal for a comprehensive system of recommendations for improving the quality of life of clients with severe intellectual disabilities in the dimensions of sexuality and partnership relationships.
Our intention is to draw attention to the fact that sexuality — when not suppressed — is inherent in these people, that it is part of their lives, and that true friendships can also emerge among persons with severe intellectual disabilities if they have the opportunity to meet one another.
The purpose of the presented study is not merely to deal with 'low-risk' sexual activity such as kissing, hugging, and cuddling, but to address sexual activities that carry the risk of pregnancy, disease transmission, or injury to one of the participants (see more in Sundram, 1992). The aim of this work is to look deeper into and develop a comprehensive understanding of the sexuality of people with severe intellectual disabilities in residential social service homes and the actual implementation of sex education for this category of persons, with an effort to improve their lives in the practice of these homes.
In order to grasp this issue, it is necessary to analyze the current situation and reflect on its possible causes. The number of professional works dealing with persons with severe intellectual disabilities increases every year. Within experimental research, however, the questions of their sexual life are somehow overlooked. Several works address this issue in persons with mild intellectual disabilities. As regards persons with severe intellectual disabilities, the elaboration of questions about their sexuality and partnership relationships does not have a long-standing tradition in Slovakia. In this regard, we consider it necessary to draw upon the (methodological) achievements of foreign research. The most widespread among these are the research studies of C. J. Sundram (1992), Z. Kozáková (2004, 2006), N. A. Murphy (2006), D. Štěrbová (2007, 2009), L. Conod, L. Servais (2008), and others. Abroad, there already exist conceptual efforts and professional approaches to the sexual life of persons with severe intellectual disabilities that respect and do not harm their intimacy.
Original outputs from Slovak authors are also beginning to emerge gradually. This issue is addressed primarily by studies of G. Bianchi, I. Lukšík (1996), I. Podmanický, I. Glas (1999), E. Poliaková (1996, 2003), J. Prevendárová (1994, 2000), I. Šurabová (2002), K. Janiš, D. Marková (2007), and others. However, an analysis of the situation in Slovakia shows that comprehensive studies of sexuality and its manifestations in persons with severe intellectual disabilities are absent. Discussions about this issue in our conditions are new and are connected with the modernization of social services, the integration of persons with disabilities into society, and the effort to fully realize all their rights and needs with the aim of improving quality of life.
In this section, we draw attention to already published monographs in the indicated area — V. Täubner, K. Janiš (1998), K. Janiš, V. Täubner (1999), S. Mandzáková (2008a), D. Štěrbová (2007, 2009), S. Mandzáková, L. Horňák (2009a), and others.
The work can be characterized as monothematic, theoretical-analytical, and empirical, based on the conducted research. From a methodological standpoint, it involves a monographic procedure, a mixed quantitative-qualitative research design with elements of comparison. Within the research, content analysis techniques, document analysis, theoretical analysis of factors influencing quality of sexual life — cause-and-effect diagnostics (Ishikawa diagram), questionnaires, direct non-participant observation, non-standardized interviews, and sexual stories (authentic accounts) were used.
The work is divided into four chapters. In the first chapter, we deal with the epistemological foundations of the issue of sexuality of persons with severe intellectual disabilities. Within this chapter, we analyze the terminological, philosophical-historical, legal, and legislative foundations of the issue being addressed and outline the current state of knowledge, presenting essential theoretical and research findings in the context of the sexuality of persons with severe intellectual disabilities. The second chapter is devoted to the area of partnership relationships and sexuality of persons with severe intellectual disabilities. It discusses sexual needs, outlines the possible consequences of suppressed sexual tension and the possibilities for its venting, and addresses ethical questions regarding the sexuality of these persons. The culmination of this chapter involves presenting the sexuality and partnership relationships of clients with severe intellectual disabilities in residential social service homes, introducing paraphilias, and drawing attention to inappropriate sexual behavior. The chapter concludes with a section on the attitudes of both professional and lay public toward the issue at hand. The third chapter presents the theoretical foundations of sex education and preparation for partnership for persons with severe intellectual disabilities. It familiarizes the reader with terminological questions of this component of education, introduces some of its foundations, draws attention to its significance in residential social service homes, and emphasizes the necessity of an interdisciplinary approach to this important issue. In conclusion, it presents the basic philosophy of approaching the sexuality of persons with severe intellectual disabilities based on foreign experience. The fifth chapter acquaints us with the research on selected aspects of the quality of sexual and partnership life of clients in residential social service homes. The sixth and final chapter of the monograph presents the outputs of the conducted research and their possible utilization for special education theory, methodology, and the practice of residential social service homes.
In this work, we use terminologically inconsistent terms — for example, clients with intellectual disabilities; in accordance with the Social Services Act (Collection of Laws No. 448/2008), we also use the term users of social services, as well as person with intellectual disability, child with intellectual disability, etc., with the understanding that we always have in mind primarily the person as such, the concrete individual whose mental capacities are reduced with all the consequences (Štěrbová, 2004).
We are aware that in this work we cannot fully cover all problems related to the sexuality of persons with severe intellectual disabilities, despite the fact that thematically it covers areas that have not yet been sufficiently elaborated in the available literature. However, the presented study can enrich the educational process of clients with severe intellectual disabilities, as well as the families of children with intellectual disabilities and other professionals who are interested in this topic just as we are. Through this work, we wish to be of assistance to the professional staff of residential social service homes who are in direct contact with clients and, above all, to fulfill the rights of clients with severe intellectual disabilities regarding their sexuality, which arise from international agreements. It clearly shows that without addressing these life areas of people with intellectual disabilities, we cannot speak of their successful rehabilitation, socialization, and quality of life.
The Author
CONTENTS
INTRODUCTION
1 EPISTEMOLOGICAL FOUNDATIONS OF THE ISSUE OF SEXUALITY OF PERSONS WITH SEVERE INTELLECTUAL DISABILITIES 1.1 TERMINOLOGICAL FOUNDATIONS OF THE ISSUE BEING ADDRESSED — DEFINITION OF THE FUNDAMENTAL CONCEPTUAL APPARATUS 1.1.1 Definition of the concept of sexuality and basic concepts related to it 1.1.2 A client with severe intellectual disability as an individuality, the individuality of their needs in the context of societal development 1.1.3 Residential social service homes in the horizon of the development of care for clients with severe intellectual disabilities 1.2 PHILOSOPHICAL-HISTORICAL FOUNDATIONS 1.2.1 Quality of life of clients with severe intellectual disabilities 1.3 LEGAL AND LEGISLATIVE FOUNDATIONS 1.4 CURRENT STATE OF KNOWLEDGE IN THE ISSUE — THEORETICAL AND RESEARCH FINDINGS 1.4.1 Analysis of research on the sexuality of persons with severe intellectual disabilities
2 SEXUALITY AND PARTNERSHIP RELATIONSHIPS IN PERSONS WITH SEVERE INTELLECTUAL DISABILITIES 2.1 SEXUAL NEEDS OF PERSONS WITH SEVERE INTELLECTUAL DISABILITIES 2.1.1 Development of sexuality in persons with severe intellectual disabilities 2.1.2 The nature of sexuality and partnership behavior of persons with severe intellectual disabilities 2.1.3 Consequences of suppressed sexual tension and the possibilities for its venting in persons with severe intellectual disabilities 2.1.4 Sexual abuse and exploitation of persons with severe intellectual disabilities 2.2 ETHICAL QUESTIONS REGARDING THE SEXUALITY OF PERSONS WITH SEVERE INTELLECTUAL DISABILITIES 2.3 SEXUALITY AND PARTNERSHIP OF CLIENTS WITH SEVERE INTELLECTUAL DISABILITIES IN RESIDENTIAL SOCIAL SERVICE HOMES 2.4 PARAPHILIAS AND THEIR CONSEQUENCES IN PERSONS WITH SEVERE INTELLECTUAL DISABILITIES 2.5 HOMOSEXUALITY IN PERSONS WITH SEVERE INTELLECTUAL DISABILITIES 2.6 PUBLIC ATTITUDES TOWARD THE SEXUALITY AND PARTNERSHIP OF PERSONS WITH SEVERE INTELLECTUAL DISABILITIES
3 THEORETICAL FOUNDATIONS OF SEX EDUCATION FOR PERSONS WITH SEVERE INTELLECTUAL DISABILITIES 3.1 TERMINOLOGICAL QUESTIONS OF SEX EDUCATION FOR PERSONS WITH SEVERE INTELLECTUAL DISABILITIES 3.2 SOME FOUNDATIONS FOR SEX EDUCATION IN RESIDENTIAL SOCIAL SERVICE HOMES 3.3 TARGET GROUPS AND THE NEED FOR AN INTERDISCIPLINARY APPROACH IN SEX EDUCATION OF PERSONS WITH SEVERE INTELLECTUAL DISABILITIES 3.4 BASIC PHILOSOPHY OF APPROACHING THE SEXUALITY OF PERSONS WITH SEVERE INTELLECTUAL DISABILITIES 3.4.1 Documents for the basic philosophy of a protocol on the sexuality of persons with severe intellectual disabilities 3.4.2 Informed consent (qualified decision) regarding sexual expression
4 RESEARCH ON SELECTED ASPECTS OF QUALITY OF LIFE OF CLIENTS IN RESIDENTIAL SOCIAL SERVICE HOMES IN THE DIMENSION OF SEXUALITY 4.1 RESEARCH PROBLEM 4.2 RESEARCH AIM AND OBJECTIVES 4.3 RESEARCH HYPOTHESES 4.4 RESEARCH METHODS AND METHODOLOGY 4.4.1 Characteristics of the sample 4.4.2 Research design
5 RESEARCH RESULTS AND THEIR INTERPRETATION 5.1 ANALYSIS OF SELECTED ASPECTS OF SEXUALITY OF CLIENTS WITH SEVERE INTELLECTUAL DISABILITIES 5.1.1 General evaluation of the frequency of occurrence of selected aspects of sexuality of clients with severe intellectual disabilities 5.1.2 Examination of the influence of selected factors on chosen aspects of sexuality of clients with severe intellectual disabilities 5.2 ANALYSIS OF ATTITUDES OF PROFESSIONAL STAFF OF RESIDENTIAL SOCIAL SERVICE HOMES TOWARD THE SEXUALITY AND SEX EDUCATION OF CLIENTS WITH SEVERE INTELLECTUAL DISABILITIES 5.2.1 General evaluation of professional staff attitudes toward the sexuality and sex education of clients with severe intellectual disabilities 5.2.2 Analysis of the influence of selected factors on professional staff attitudes toward the sexuality and sex education of clients with severe intellectual disabilities 5.3 ANALYSIS OF THE SITUATION IN THE AREA OF SEXUALITY OF CLIENTS WITH SEVERE INTELLECTUAL DISABILITIES AND THE IMPLEMENTATION OF SEX EDUCATION IN RESIDENTIAL SOCIAL SERVICE HOMES 5.3.1 Some indicators of the quality of social services provided by the given facility 5.3.2 Analysis of selected aspects of sexual behavior and partnership relationships of clients with severe intellectual disabilities 5.3.3 Analysis of the professional training of residential social service home staff in selected aspects of sexuality 5.3.4 Analysis of the situation regarding sex education and its implementation in residential social service homes 5.3.5 Proposals for the implementation of sex education by professional staff of residential social service homes
6 RESEARCH CONCLUSIONS 6.1 RESEARCH CONCLUSIONS AND DISCUSSION 6.2 RECOMMENDATIONS FOR SPECIAL EDUCATION THEORY, METHODOLOGY, AND THE PRACTICE OF RESIDENTIAL SOCIAL SERVICE HOMES 6.2.1 Proposal for a comprehensive system of recommendations for the implementation of sex education in residential social service homes
Details: Title: The Quality of Sexual and Partnership Life of Persons with Severe Intellectual Disabilities Author: Stanislava Mandzáková Number of pages: 292 pages ISBN: 9788055504551 Year of publication: 2011