Background and purpose
The purpose of this project was to synthesize my research on sexuality and young people with intellectual disabilities (ID) from an intersectional perspective. Although social reforms relating to self-determination, empowerment and normalization have guided Swedish society since the 1960s and 1970s, people with ID are often viewed as more vulnerable and exposed when it comes to sexuality. Intellectual disability affects one’s ability to think abstractly and to understand time, context and certain processes. The concerns of parents and school staff about unwanted pregnancy and sexual abuse can lead to an overprotected and isolated social life for many people with ID. Nevertheless, analyzing the conditions of a person’s life must include more than simply the disability: gender, age, sexual orientation and ethnicity are other relevant factors that relate to cultural norms about sexuality. Current societal challenges regarding comprehensive migration have created much need for knowledge about the different groups’ sexual and reproductive health and rights (SRHR). Society’s relatively homogeneous system of values regarding sexuality have become more heterogeneous, with varying standards and attitudes towards, for example, premarital sex, LGBT people and sex education. Parallel and conflicting norms can be particularly problematic to understand and manage for people with ID. Also, research shows that the sex education taught in special schools is often heteronormative and gender stereotypical. Therefore, the national SRHR strategy indicates that persons with disabilities are a prioritized target group in the development of knowledge on the area. The following questions have arisen: How are contradictory and parallel sexual norms in a multicultural society perceived by young people with ID, according to staff members in special schools? What knowledge do the staff members have about sexuality from a multicultural perspective, and how do they interact with students with so-called honour-related experiences? Also, what is meant by the concept of SRHR in relation to people with ID? The empirical data consists of a synthesis of 62 interviews with young people with ID as well as their parents, teachers and other members of school staff. The project was divided into a three-part study, with a focus on the analysis of the interviews with school personnel regarding honour-related experiences in special schools. The project is associated with the Centre for Sexology and Clinical Sexology at Malmö University.
Results
Study 1: “‘It’s their way of protecting them’: Between care and control in an honour context for youths with IF”. This study aims to examine the school staff’s views on honour-related experiences (HRE) among students in special schools. The results show that they are viewed as particularly vulnerable to HRE and seem to have more difficulties than others when managing and responding to these experiences. Moreover, school staff members believe that disability is cultural, and in line with this, note that some families experience shame about having a child with ID. Therefore, many families strive for so-called normality, which explains, for example, arranged marriage as a way to organize future care. From a social constructive perspective, the study shows a “sexual honour script” with a continuum between the care and control of students with ID.
Study 2: “‘We need Culture Bridges’: Challenges in Sex Education for Youths with Intellectual Disabilities in a Multicultural Society”. This study aims to explore whether sex education in Swedish special schools is influenced and challenged by today's multicultural society. The staff of special schools believe that, although information about HRE is important and should be included in sex education, the topic is complicated and sensitive. Further, they lack relevant methods and materials as well as strategies for handling situations with young students with ID at risk for HRE. Colleagues with experience of other, non-Swedish cultures thus act as ‘cultural bridges’ and are seen as an important resource. The staff also believe that an employer’s approach to sex education and diverse sexual norms is important.
Study 3: “Sexual and Reproductive Health and Rights (SRHR) for Everyone? Sexuality and People with Intellectual Disabilities”. This study examines the concept of SRHR relating to people with ID. What relevance does the concept have? And what are its implications in everyday life? Twenty-five articles were organized into themes: ‘Sexual expression and behaviour’, ‘Sexual identity and orientation’, ‘Pregnancy and parenting’, and ‘Sexual knowledge’. The result reveals several obstacles to achieving the meaning of SRHR: the ambient heteronormative attitudes and protective/controlling behaviour, the lack of relevant sex education, and the invisible disclosure of sexual variations within the target group. Lastly, the invisibility of ‘sexual agency’ is high-lighted, as it involves the ability and potential to act consistently with what the individual wants.
Conclusion
The project shows that people with ID’s sexual vulnerability might be reinforced due to their environment’s (parents, staff members, etc.) protective and controlling actions. Norms and ideals regarding sexuality and ID are complicated because the target group is expected to live like “everyone else”, and yet, are not seen as capable of coping with (sexual) relationships, family life and parenting. The perception of disability also varies culturally. In some cultures, guilt and shame are associated with having a child with disabilities. Some families strive to “normalize” the lives of their children, for example, through arranged marriage. Societal reforms concerning self-determination, empowerment and normalization should be problematized and critically reviewed so their relevance and importance in the everyday lives of people with ID can be determined. This is especially important for capturing the real meaning of the concept of SRHR. By highlighting the target group’s own voices they can be stakeholders in their own (sexual) life. The idea is to develop the abilities and opportunities of students with ID to self-define themselves sexually, choose their sexual activities (i.e. with whom and when), have access to contraception, and know how to say no to unwanted sexual acts.
Results of the project (apart from publications)
So far, the project led to a role as an expert in the TRIS (Girls’ Rights in Society) project, Hidden & Forgotten, which aims to raise awareness of young people with intellectual disabilities and honour-related violence and oppression. I was also a member of an expert group of the Swedish Public Health Agency (Folkhälsomyndigheten) with planning the implementation of a national public health survey on SRHR. Additionally, the project is associated with a new network on migration and sexuality at Malmö University, which consists of researchers in the Faculty of Health and Society.
Collaboration and presentations in the surrounding community
As I am the coordinator for World Sexual Health Day (as a board member of World Association for Sexual Health), the project was included in this year’s Swedish theme of “Migration and sexuality” at September 4th. Also, it was part of the exhibition “6 Six” at Malmö University’s Orkanen Library, which was held in collaboration with the Centre for Sexology and Sexuality Studies. Furthermore, the project has been presented at popular science lectures in Finland organized by the Association for the Well-Being of Persons with Intellectual Disabilities (Föreningen för De Utvecklingsstördas Väl, FDUV).
New research questions
Based on the projects’ results, new research questions have been generated that deal with in-depth knowledge based on the target group’s own voices on the subject. In conjunction with the public health agency’s implementation of a population-based national SRHR study, a plan for an in-depth study on people with ID has been formulated. Just as with the national SRHR study, the aim is to gather current knowledge about sexual and reproductive health and rights among the target group (people with ID). How, and to what extent does sexual and reproductive health effect one’s general health and well-being? What similarities and differences does this target group have compared to the rest of the population? And how do people with ID describe their experiences of sexual and reproductive health and rights?
The project's international connections
The project includes two visits to The Institute for Genetics and Society and The Disability Center at UCLA. The analysis of the third subproject has been conducted at the Swedish house (the Swedish Institute) in Kavala, Greece. Also, in Geneva in December 2016, the project was anchored in the World Health Organization’s Guideline Development Group (where I am a member as an expert on sexuality and disability) concerning sexual counselling for healthcare providers. In Berlin in May 2017, the project was presented to BzgA, the Federal Centre for Health Education. Furthermore, the project was presented at Osaka Prefecture University in October 2017, where I was invited as a guest professor, and as a key-note at the Japanese Society of Sexual Sciences conference in Osaka, and at the Japanese Association for Sex Education seminar in Tokyo.