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Sexuality and Intellectual Disability Sexuality and intellectual disability Citation for published version (APA): Stoffelen, J. J. M. T. (2018). Sexuality and intellectual disability. Datawyse / Universitaire Pers Maastricht. https://doi.org/10.26481/dis.20180711js Document status and date: Published: 01/01/2018 DOI: 10.26481/dis.20180711js Document Version: Publisher's PDF, also known as Version of record Please check the document version of this publication: • A submitted manuscript is the version of the article upon submission and before peer-review. There can be important differences between the submitted version and the official published version of record. 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If the publication is distributed under the terms of Article 25fa of the Dutch Copyright Act, indicated by the “Taverne” license above, please follow below link for the End User Agreement: www.umlib.nl/taverne-license Take down policy If you believe that this document breaches copyright please contact us at: [email protected] providing details and we will investigate your claim. Download date: 28 Sep. 2021 Sexuality and intellectual disability Joke Stoffelen The research presented in this thesis was conducted at the Governor Kremers Centre (GKC) - Maastricht Uni- versity, in collaboration with Zorgbelang Gelderland |Utrecht. Production: DataWyse |Universitaire Pers Maastricht ISBN: 978-94-93019-00-3 © Joke Stoffelen, Maastricht 2018 Sexuality and intellectual disability Proefschrift ter verkrijging van de graad van doctor aan de Universiteit Maastricht, op gezag van de Rector Magnificus, Prof. dr. Rianne M. Letschert, volgens het besluit van het College van Decanen, in het openbaar te verdedigen op woensdag 11 juli 2018 om 16:00 uur door Johanna (Joke) Maria Theodora Stoffelen Promoters Prof. dr. L.M.G. Curfs Prof. dr. G.J. Kok Assessment committee Prof. dr. R.A.C. Ruiter, chair Prof. dr. H.W. van den Borne Prof. dr. J. Burns, Canterbury Christ Church University Dr. I. Tuffrey-Wijne, Kingston University/St. George’s University of London Prof. dr. N.K. de Vries Contents Chapter 1 Introduction 7 Chapter 2 Sexual health of people with an intellectual disability 19 Chapter 3 Sexuality and Individual Support Plans for People with Intellectual Disabilities 53 Chapter 4 Views on sex. Using the Nominal Group Technique to study the conceptions on sexuality and sexual rights of people with mild intellectual disabilities. An example of an inclusive research design. 73 Chapter 5 Homosexuality among people with a mild intellectual disability: an explorative study on the lived experiences of homosexual people in the Netherlands with a mild intellectual disability 91 Chapter 6 Women Who Love. An Explorative Study on Experiences of Lesbian and Bisexual Women with a Mild Intellectual Disability in the Netherlands 111 Chapter 7 General discussion 133 Summary 147 Samenvatting 155 Samenvatting in begrijpelijke taal 163 Valorisatie addendum 169 Dankwoord 177 Publicaties 181 Curriculum Vitae 185 5 Chapter 1 Introduction 7 Introduction 1.1 Introduction People with an intellectual disability (ID) have sexual needs, wishes and desires. They of- ten find and experience sexuality to be a complicated matter. In this thesis, we want to explore the topic of sexuality among people with ID. First of all, definitions are clarified (1.2). Next, an outline is given of the barriers that people with ID encounter in realizing their sexual rights (1.3). This leads to the research questions of the thesis, described in 1.4. A framework has been added from which the research was carried out. The various studies are explained in paragraphs 1.5 to 1.8 and conclude with a conclusion (1.9). 1.2 Definitions Sex, sexuality, sexual health, sexual rights, are terms that have a connection and resemble with each other. The World Association for Sexual Health (WAS, n.d.) states that sexual health is influenced by a multitude of factors such as societal factors, sexual behaviour, attitudes, biological factors and genetic disorders. Sexual health is also more than repro- ductive health (WAS, n.d.). The WAS has, after consultation with the WHO, formulated the following definitions on the terms “sex”, “sexuality”, “sexual health” and “sexual rights”: Sex Sex refers to the biological characteristics which define humans as female or male. [These sets of biological characteristics are not mutually exclusive as there are in- dividuals who possess both, but these characteristics tend to differentiate humans as males and females. In general use in many languages, the term sex is often used to mean "sexual activity", but for technical purposes in the context of sexuality and sexual health discussions, the above definition is preferred.] Sexuality Sexuality is a central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, de- sires, beliefs, attitudes, values, behaviours, practices, roles and relationships. While sexuality can include all of these dimensions, not all of them are always ex- perienced or expressed. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, ethical, legal, historical, reli- gious and spiritual factors. Sexual health Sexual health is a state of physical, emotional, mental and social well-being related to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual 9 Chapter 1 health requires a positive and respectful approach to sexuality and sexual relation- ships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and ful- filled. Sexual rights Sexual rights embrace human rights that are already recognized in national laws, international human rights documents and other consensus documents. These in- clude the right of all persons, free of coercion, discrimination and violence, to: • the highest attainable standard of health in relation to sexuality, including access to sexual and reproductive health care services; • seek, receive and impart information in relation to sexuality; • sexuality education; • respect for bodily integrity; • choice of partner; • decide to be sexually active or not; • consensual sexual relations; • consensual marriage; • decide whether or not, and when to have children; • and pursue a satisfying, safe and pleasurable sexual life. (WAS, n.d.) The definition of “intellectual disability” is formulated as follows by The American Asso- ciation on Intellectual and Developmental Disabilities (AAIDD): Intellectual disability is a disability characterized by significant limitations in both intellectual functioning and in adaptive behaviour, which covers many everyday so- cial and practical skills. This disability originates before the age of 18 (AAIDD, n.d.). 1.3 Sexuality and intellectual disability In 2008, the AAIDD (2008) states that it is important to pay attention to the sexual rights of people with ID. These rights are not self-evident. People with ID experience barriers in realizing their sexual rights in practice. The most important ones: people with ID are extra vulnerable to sexual abuse; they have a lack of knowledge and skills; they are dependent on others; and they have limited information. Sexual abuse For people with an ID, sexual abuse remains an essential problem (Abbott & Howarth, 2005; Eastgate, Van Driel, Lennox & Scheermeyer, 2011; Hickson, Khemka, Golden, Chat- zistyli, 2008; Reiter, Bryen, & Shachar, 2007; Van Berlo et al., 2011). Overprotection, 10 Introduction segregation and a lack of skills, makes them especially vulnerable to sexual abuse (Hollo- motz, 2011). A lack of knowledge and skills A lack of knowledge about sexuality and sexual rights makes people with an ID especially vulnerable (Murphy & O'Callaghan, 2004; O'Callaghan & Murphy, 2007). People with an ID receive less education about sexuality. Through this, they have less knowledge and skills about sexual health topics than their peers without an ID (Healy, McGuire, Evans & Carley, 2009; Kelly, Crowley & Hamilton 2009; Lesseliers, 1999; Leutar & Mihoković, 2007; McCabe, 1999; McCarthy, 2009; Murphy & O’Callaghan, 2004). Dependence on others The dependence on others for care and support, is of influence. Individuals with ID come into contact with many professional carers. “Many of the youth live in a protected
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