Access to Sexual and Reproductive Health and Rights Information and Services: Perspectives of Women and Girls with Disabilities in Uganda and Bangladesh

"My mother puts me on the wheelchair and takes me to the health facility when I am unwell. The period? Sex? Family planning? I don't know what that is." - 15-year-old girl with hearing and mobility disabilities, Yumbe, Uganda

Evidence shows that the sexual and reproductive health rights (SRHR) and needs of persons with disabilities, especially those who are most vulnerable due to poverty, are largely unmet. This report describes research carried out in Uganda and Bangladesh to explore: knowledge and awareness of SRHR care among women and girls with disabilities; the institutional, cultural, and/or personal barriers that prevent them from accessing SRHR information and services; and the appropriateness of services for women and girls with disabilities. Its purpose is to help plan for SRHR social and behaviour change (SBC) campaigns in the scope of inclusive SRHR service provision and, more broadly, to guide actors working in SRHR service delivery and communication, advocacy, and cooperation with organisations of persons with disabilities (OPDs).

ThinkPlace, a Kenya-based consultancy in strategic and service design, carried out this research on behalf of Humanity & Inclusion (HI) and in liaison with HI's in-country partners, as well as the OPDs that cooperated on WISH2ACTION, a 3-year project (2018-2021) funded by the Foreign, Commonwealth & Development Office (FCDO). Research teams in Bangladesh and Uganda used qualitative and ethnographic research methods to investigate the behavioural drivers and access barriers of women and girls with disabilities, and those of other individuals that influence them, including family members, caregivers, and peers. Specifically, the teams conducted individual semi-structured interviews, focus group discussions, and observations involving a total of 80 individuals, including 47 women and girls with disabilities. Lines of inquiry were informed by a literature review on disability and SRHR in Bangladesh and Uganda.

Findings are organised into four main themes: key experiences and perceptions of women and girls with disabilities; isolation and communication challenges; future perspectives and sexuality; and access to related information and services. Within those themes, the analysis and discussion of the findings focus on 4 main aspects: the role of key gatekeepers; socially imposed barriers; the individual perceptions of women and girls; and enabling practices. Selected insights include:

• Family members play a key role as gatekeepers in promoting or obstructing the fulfilment of sexual rights. This key role can enable or limit access to SRHR services for women and girls with disabilities, depending on the prevailing social norms, culture, knowledge, experience, and attitudes.
• Dependency on the family is reinforced through a lack of independent accessible communication opportunities and self-selected social networks outside of the close family system. The dependency that research participants had on their families seemed to be more accentuated in Bangladesh than Uganda, perhaps due to the stronger or tighter protection practices embedded in the country's social and religious norms. Contextual factors related to social norms, culture, religious, and gender norms can intersect to increase challenges around access and uptake of SRHR information and services for women and girls with disabilities.
• Opportunities to access SRHR information and services, and to make free decisions about sexuality and sexual health, are influenced by caretakers' and family members' perceptions and misconceptions about gender, age, disability, and sexuality. The lack of communication about aspects of sexuality and SRH, exacerbated by an overprotective attitude held by key gatekeepers, can further reinforce barriers for women and girls with disabilities to access information and services.
• There is a high prevalence of isolation and abuse, including sexual and gender-based violence (SGBV), amongst women and girls with disabilities (around 30%). Also, due to misconceptions of disability, discrimination against persons with disabilities, communication difficulties, and ignorance surrounding their rights, women and girls with disabilities are often subjected to forced sterilisations and other SRH-related coercive practices.
• The impact of disability-based discrimination, stigma, and abuse against women and girls with disabilities on their self-efficacy is influenced by family interactions. One finding from Bangladesh: The reported self-esteem of the participating women and girls with disabilities was extremely low - at times, they seemed to assume responsibility for the abuse experienced or expressed guilt for being a burden for the family. Many had internalised their lack of self-reliance in all aspects of life.
• The families' knowledge and beliefs, along with the existence of support systems and SRHR information, are critical factors in the ability to resist restrictive social norms and social barriers. Previous research indicates that strategies that counter the "rightfulness" of a norm (e.g., raising awareness of the fact that women and girls, with and without disabilities, can be sexually active) are not effective in societies where most individuals' attitudes align with that norm. A more effective way forward could be focusing on changing attitudes and empowering a core group of influential individuals who can, on their own, represent a counter/positive norm and create buy-in of the larger group.
• Education, economic opportunities, accessibility of services, and the exposure to social networks are determinants of whether a woman or a girl with disability accesses health-related information and services. For example, access to school has the potential to help girls and women with disabilities improve their social status and learn how to take ownership of their lives, including their SRH lives.

Based on this research, the report recommends programmatic interventions for delivery of SRH information and services to women and girls with disabilities, including:

Support key gatekeepers:

• Help parents and caretakers, such as grandparents, understand and respect the sexuality of girls with disabilities, and offer them guidance on the options they have to ensure children's self-reliance.
• Emphasise the relevance of SRHR to key gatekeepers so they are aware of their role in supporting their family members with disabilities during the preparation for marriage and sexual relations.
• Create and bolster existing peer models among families of women and girls with disabilities that stimulate engagement between similar age groups, geographic regions, and type of disability.
• Address the high risk of SGBV for women and girls with disabilities among key gatekeepers and SRHR actors (e.g., by providing awareness sessions and including training modules on GBV and disability in training curricula for health workers).

Reduce socially imposed barriers:

• In cooperation with OPDs and SRHR stakeholders, develop strategies that focus on addressing restrictive social norms and misconceptions of disability through SBC and communication strategies.
• To reduce dependencies and increase access to SRHR information, facilitate access to economic and income-generating opportunities and education for women and girls with disabilities as a key factor to increase communication opportunities and participation in social networks.

Positively impact perceptions:

• Recruit women with disabilities as community health workers with training in SRHR, provide reasonable adjustments to allow them to do their job (e.g., by lowering desks for wheelchair users), and portray their participation as experts in domains that are socially relevant.
• Encourage the integration of women with disabilities into existing women's peer groups, and address issues related to SRHR that incentivise and inspire their support to other women with disabilities.
• Design SRHR information together with women and girls with disabilities to better reflect their lived experiences.

Undertake enabling practices:

• Design health programmes to work together with women and girls with disabilities and their family members, whose responsibility can be leveraged to complement the role of health actors - thus, empowering families and communities with distinctive roles in health and wellbeing of their children and siblings and promoting their self-esteem, agency, and independence.
• Closely cooperate with OPDs and other disability-focused and civil society organisations to design inclusive outreach strategies and referral mechanisms that are empathetic and sensitised to the access challenges of women and girls with disabilities.
• Encourage open forums for the discussion and dissemination of good practices among healthcare workers, where women and girls with disabilities or OPDs can participate and contribute.

Editor's note: This report was launched on July 13 2022 at an H&I webinar, Disability Inclusion in SRHR: From Commitment to Practice, alongside two related resources: (i) a guideline, "Sexual and Reproductive Health and Rights for All: Disability Inclusion from Theory to Practice [PDF], and (ii) a compendium of learnings and best practices, "Learning from a Disability-Inclusive Sexual Reproductive Health and Rights Programme (WISH2ACTION)" [PDF].