What are the external and internal barriers for organizations of persons with disabilities, and especially women with disabilities, to be involved in policy discussions impacting on gender equality at national and global levels?

Author: Diana Samarasan

The April Forum focused on the intersection of gender and disability. Contributors responded to the question, “What are the external and internal barriers for organizations of persons with disabilities, and especially women with disabilities, to be involved in policy discussions impacting on gender equality at national and global levels?” Given the news this week of the pending U.S. Supreme Court decision to overturn Roe v. Wade – the landmark 1973 court case that resulted in federal protection of a woman’s right to choose an abortion – the topic of gender equality seems especially pertinent. As many are saying, a decision to roll back this right will have a disproportionate impact on the most marginalized women, among them, women with disabilities. See, for example, this article by Rebecca Cokley, the first U.S. Disability Rights Program Officer for the Ford Foundation. Such a ruling won’t only impact women in the United States but will set a precedent for nations across the globe already intent on denying human rights, especially for women.

At a time when rights are in danger, it is particularly important to build strong coalitions which include as many people as possible. Yet women with disabilities remain for the most part outside of movements addressing gender equality, and the disability movement insufficiently addresses gender internally. As Mina Mojtahedi wrote in her response in the Forum, part of the reason for this is the siloing of disability and gender. There is a long history of people with disabilities – of all genders – being seen and treated as if they are gender-less and sex-less. This is why, for example, so many sexual and reproductive rights programs and services, including services addressing victims of sexual violence, are not disability-inclusive. While Forum respondents did not use the term, ‘ableism,’ this belief that disabled people are ‘less than’ non-disabled people means that women with disabilities are not perceived by others, including other women, as fully ‘women,’ though they make up one in every five women globally. 

Even within the disability movement, women with disabilities are often excluded or not leading, and, as Esma Gumberidze relayed, “OPDs are not gender sensitive.” Pradeep Bagival reminds us how long it took for the CRPD Committee to recognize the lack of sufficient representation of women within that body. It wasn’t until 2016 when 17 men and only 1 woman were elected to the Committee that a campaign was initiated to address this gap. Forum respondents attributed this state of affairs to unequal access between men and women with disabilities to formal education, family support, community services, financial assets, and employment. Fordham University Professor Sophie Mitra, who heads the Disability Data Initiative – a systematic analysis of disability questions in national censuses and household surveys globally between 2009 and 2018 and indicators disaggregated across disability status for 41 countries – found that indeed, “women and rural residents tend to have lower ever attended school rates, educational attainment indicators, and literacy rates compared to men and urban residents, respectively. The disability gap for these educational outcomes also tends to be larger among women than men and in rural areas compared to urban areas…” These gaps mean that girls and women struggle more with independent living and this impacts their leadership. Campaigning for roles, such as OPD governance positions elected through general assemblies, requires broad visibility and credibility, which builds on relative financial standing and the backing of prominent members of the community. 

What can be done? Esma as well as the National Union of Women with Disabilities of Uganda emphasize how important accessibility of information and venues is as a basis for inclusion. When the UN celebrated the 25th anniversary of the Beijing Declaration and Program of Action with Generation Equality Forums (GEF) in Mexico and France in 2021, GEF organizers spent little effort involving feminists with disabilities. “Women-led OPDs were not included in the bodies governing the process and accessibility was tough. OPDs reported that if they were invited to events, it was at the last minute and without any opportunity for preparation, thus creating a power imbalance that prevented their effective participation.” This lack of consideration for accessibility and the process of inclusion is common across movements. Dr. Maria Kett underlined this same gap  in her blog from this Forum in November 2021, relaying how at the UN Climate Change Conference of the Parties (COP26) the Israeli Minister of National Infrastructure, Energy and Water Resources, Karine Elharrar-Hartstein, was unable to enter the building in her wheelchair. 

Even when women with disabilities are participants, for example in broader women’s organizations or movements, Esma points out that it is rare that they are leading or making decisions. In order for this to change, suggests Ali, women with disabilities need to be specifically funded for leadership mentoring and campaigns. Pradeep observes that if UN Country Teams better adhere to the UN Disability Inclusion Strategy and effectively engage with OPDs, they can play a role in promoting increased participation of women with disabilities in policy discussions on gender equality. It is also helpful when women’s rights funders (or funders of OPDs) recognize the importance of an intersectional approach to their funding and ask questions of all grantees about inclusion and participation of women with disabilities – a tactic suggested in Supporting Inclusive Movements: Funding the Rights of Women with Disabilities, a donor guide published by the Disability Rights Fund. In the end, Mina says, involvement of women with disabilities in gender equality policy discussions will take recognition of commonalities between gender transformative and disability inclusive approaches. It will take movement commitment and creativity. As well-known U.S. disability activist, Judy Heumann says, “Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can.”