Disabled activist Lizzie Kiama speaks to Mission about agency for disabled women and femmes worldwide.

By Audra Heinrichs.

In April, the United Nations Populations Fund published its annual State of World Population report with the theme “My Body Is My Own.” The report measured both women’s agency and ability to make decisions about their bodies and the extent to which various countries’ laws support or interfere with that process.

The UNFPA report revealed that globally, girls and boys with disabilities are nearly three times more likely to be subjected to sexual violence, with girls at the greatest risk. In the United States, advocacy group Disabled World echoed this, estimating that 80 percent of women and 30 percent of men with intellectual disabilities are forced at some point into some form of non-consensual sex, but only 3 percent of such sexual abuses involving people with developmental disabilities are ever reported. The findings also established a link between lack of bodily agency and potentially depressing economic productivity, undercutting skills, and resulting in extra costs to health care and judicial systems—especially in countries like Kenya where women and femmes are subjected to polygamy, early marriage, and harmful cultural practices such as female genital mutilation.

No one understands that connection better than Lizzie Kiama, a disabled activist and contributor to the UN report. After losing the ability to walk in a serious car accident, Kiama founded This-Ability, a management consulting firm that aims to provide management support to organizations working in Kenya. For the last three years, This-Ability has dedicated itself to improving opportunities for vulnerable communities, particularly persons with disabilities, using sustainable and inclusive methods.

Mission spoke with Kiama about how This-Ability came to be, the ways in which government and healthcare systems fail people with disabilities worldwide, and why raising awareness is only the first step in enacting radical change.

Audra Heinrichs: How did This-Ability Trust come to be?

Lizzie Kiama: Obviously, identifying as a disabled woman exposed me to the needs of people with disabilities. When I became a mother myself, I went through a number of experiences. I felt that I was not being seen as a person and that my rights to motherhood and sexuality were being questioned, which propelled me to focus on how other women with disabilities were experiencing the rights to motherhood, sexuality and their health. The revelations that I found doing very basic research was that there were a lot of violations that happened to women with disabilities, particularly in Kenya. I set up a company and focused on doing consultancies where I would resource projects that tried to eradicate some of the problems or provide solutions to some of the issues that women with disabilities faced. I then brought together a few people that I trusted and set up a charitable trust that would allow me to build a team and work on this issue from a systemic standpoint. From then on we were able to do a little more research on the realities of women with disabilities, meet with different groups across Kenya, and design programs that responded to their needs.

AH: The theme of the UNFPA report was “bodily autonomy.” Describe your involvement in the report and what that theme means to you.

LK: I took part in the report by virtue of telling my story. The realities for people with disabilities when it comes to the right to bodily autonomy is that they’re very limited in decision-making. The right to choice has continuously been taken away from women with disabilities and it starts from the home. Parents want to protect their daughters and will keep them hidden or excluded from participating in various activities because in their minds, they’re protecting them. But that eliminates choices for girls. That practice can be more extreme. Families will collude to forcefully sterilize those with disabilities. There are a lot of cases that we keep receiving of women with disabilities who have been raped and have become pregnant as a result of sexual violence. The family will then decide whether or not this woman will keep the pregnancy.

It also happens in healthcare settings where deaf and blind women’s confidentiality is taken away because the local healthcare settings do not have a provision for sign language. Doctors do not want to make an effort to either learn sign language or ensure that they are hiring an interpreter who will maintain confidentiality, and the same goes for blind women. This issue cuts across all disabilities because when you’re disabled, it is seen that you do not have any legal capacity. Most of the time, there’s a proxy that makes decisions on your behalf.

AH: What work is This-Ability Trust is doing right now?

LK: I truly believe our work is successful because we center women with disabilities, but there’s also a lot of value in providing alternative forms of education to the general public and in building the capacity for better healthcare. When it comes to reproductive health, these women with disabilities mention the stigma and discrimination they experience at the hands of healthcare providers, so it’salso important for us to invest in providing learning opportunities for healthcare providers and quantify the number of women with disabilities in the country.

We’ve been using mobile technology to collect basic demographic data of people with disabilities and created an online portal that has different courses to train young disabled women to adopt technology and become more visible—whether it’s via social media, digital marketing, or any platform to tell their stories. We’re also using the online portal for training healthcare providers and have a toll-free platform run by women with disabilities in different regions in Kenya which provides a safe space for women with disabilities to talk about different topics and get access to information around gender-based violence.

AH: Obviously this report is largely about raising awareness surrounding disability, but what do you see as tangible steps in enacting change?

I think it would be extremely useful for any advocacy to be done in partnership with the communities themselves. When we submit a report as a disability organization and try to lobby the government to make change, it’s a difficult process because of the power dynamic. But when the United Nations is engaging with our government based on this issue and we are there, endorsing this report, I think it pushes the conversation forward and we begin to have local conversations that drive tangible change. I think a process that includes disability organizations like ours continuing to measure and document the experiences of disabled communities would go a long way in pushing the envelope.

Image credit: Courtesy of This-Ability