The ‘Our Bodies, Our Rights’ project was undertaken to address the invisibility of disabled women’s reproductive rights and wellbeing, including those with learning disabilities. The SLDO formed a part of the advisory board as well as carrying out collaborative research with lead organisation, Engender Scotland. Women with learning disabilities disproportionately experience reproductive health and social inequalities compared to other women. They experience significant barriers to parenting, are much more likely to be excluded from reproductive and relationship health education, and are disproportionately likely to experience intimate partner and gender-based violence. It was imperative to have targeted research that ensured the voices of women with learning disabilities were heard.
The Observatory collaborated with Engender Scotland and Dr Jo Ferrie at the University of Glasgow, to develop an easy ready survey to include women with learning disabilities. Of the 95 survey respondents, 21 women had learning disabilities, survey respondents were aged between 16 and 78. Of the 21 survey respondents with learning disabilities, 20 reported poor or no sexual health or relationship education at school or as adults. This was compounded by the fact that when education was provided it was very rarely in accessible formats or made accessible to girls or women with learning disabilities.
The Observatory also ran 3 focus groups with members of self-advocacy organisations which were comprised of 12 women in total. The focus group agenda was co-designed with women with learning disabilities and emphasis was placed on anonymity and informed consent. The focus group respondents were between the ages of 18 and 78. All focus group participants (12) with learning disabilities reported poor or no sexual health or relationship education at school or as adults. Some support was offered by parents, but this was not robust or comprehensive in explaining issues to do with consent, menstruation, sexual health, sexually transmitted infections, contraception, pregnancy or reproductive health screenings. None of the focus group participants felt they knew why they menstruate or what the purpose of menstruation was (see findings report for detailed findings). They had not been told that menstruation was linked to fertility, pregnancy or reproductive health and none of them were formally educated on how to manage menstruation using menstrual products. This was echoed by survey respondents who reported poor menstrual health education in school.
None of the participants had received formal education on relationships, wellbeing or consent and all of the focus group participants, and 16 survey respondents, reported sexual violence, intimate partner violence or gender-based violence that had occurred throughout their lives. This included domestic violence and rape. Of the 8 women with learning disabilities who had had children, 7 reported having their children removed in to permanent care. This reflects research that indicates that women with learning disabilities are disproportionately likely to have their children removed from their care against their wishes and all participants reported extremely poor emotional, physical and mental health as a result of having children removed from their care.
All participants reported a need for accessible, targeted sexual and relationship education for girls and women with learning disabilities at all stages of their lives.
These findings demonstrate that women with learning disabilities experience overwhelming exclusion from mainstream sexual health education, relationship education, information on menstruation and menopause, routine sexual health screenings, information about consent and coercive sexual relationships and information and support on parenting, pregnancy and post-pregnancy. Women reported ongoing experiences of gender-based violence and felt that they were not believed or taken seriously when they did report to health and social care services. The reproductive health and wellbeing of women with learning disabilities is not robust, systematic or inclusive and places women at greater risk of poor reproductive health outcomes. This was particularly evident when considering menstrual health, where women reported not knowing how long to wear menstrual products for, when to change them, what was abnormal bleeding or clotting. Similarly, poor education on contraception and sexually transmitted infections placed women with learning disabilities at risk of reproductive infections. This project underscores the urgent need to address reproductive and sexual health inequalities experienced by with learning disabilities and demonstrates that they are essential to understanding the wider determinants of health for women with learning disabilities in Scotland.
Detailed project information, methods and analysis of the data can be found at https://www.sldo.ac.uk/media/1772/our-bodies-our-rights-additional-research-report.pdf