Founder and Executive Director, Women Enabled International
Stephanie Ortoleva has dedicated her career to advocating for civil rights. She served as a human rights lawyer for the US Department of State and went on to found Women Enabled International, a Ford grantee that works at the intersection of women’s and disability rights, collaborating with organizations around the world to educate and advocate for disabled women and girls.
As a woman with a disability, you decided to make it your life’s work to advocate on behalf of other women with disabilities by founding Women Enabled International in 2012. Why was there a need for such an organization?
Women Enabled International, which we affectionately call WEI, is unique because there is no other international organization that focuses directly on the intersection of gender and disability. We are really helping to bring the voices of the strong, disabled women’s rights advocates to the forefront so that women with disabilities are speaking for ourselves, as opposed to having others speak for us. And through those processes, we also do advocacy training, capacity building, and develop numerous publications to help disabled women’s organizations do their advocacy.
Disabled women are organizing for ourselves because we have found that other movements, whether it’s the women’s rights movement or the disability rights movement, very often don’t include our issues as the key points of their advocacy. Disabled women just aren’t going to be silent anymore.
Can you point to some examples of what can be accomplished when disabled women are, in fact, able to speak on their own behalf?
One of the most exciting landmark moments was nearly 14 years ago when the United Nations adopted the Convention on the Rights of Persons with Disabilities. Disabled women fought vigorously for a dedicated article on the rights of women and girls with disabilities. This was unique for a human rights treaty. The Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) of 1979 has no mention of disabled women. So it was even more imperative to have us recognized.
On our website we have a map that shows disabled women’s rights organizations in different countries, and it’s astounding how it has grown every year with an increasing number of really powerful, accomplished disabled women’s rights organizations.
Some countries have worked a bit harder to try to include the rights of disabled women in gender-based violence programs. All of this encourages us to keep working.
You emphasize an “intersectional human rights-based” approach in your advocacy work. What does this mean?
To me, an intersectional framework is absolutely essential to the work we do. So, it’s looking at all aspects of a person. And for me, of course, two of the primary intersections that I work on are gender and disability, but women with disabilities, like all women, have many other aspects of their lives. Whether it’s our age—younger women have needs that are different from older women. Whether it’s based on our race—we have lots of information now about differences in maternal mortality based on race. Or whether it’s our gender identity. Those issues are all really important, but we need to see women as a totality.
How can organizations do a better job of accommodating the needs, as well as the voices, of disabled women?
There are a number of really important women’s rights conferences around the world. We advocate really strongly that disabled women shouldn’t only be on disabled women’s panels but we should be on panels that relate to any issue that’s important to all women. And you need to make sure that the events in and of themselves are accessible. Are there sign language interpreters for women who are deaf? Are there materials in alternative formats for women who are blind, rather than just handed-out printed copies? Do your event locations have things like accessible bathrooms for women who use wheelchairs? So inclusion is a very broad concept. It’s not just saying, “Oh, sure, you can come,” but rather making certain that the event is welcoming and that the issues of disabled women are integrated in with issues of all women. Women with disabilities are women too!
What are some of the stories you hear from women with disabilities about the discrimination they face?
A woman told me about how she had gone to a clinic that provides sexual and reproductive health care services for women. She was using her wheelchair to enter the clinic and the receptionist told her, “Oh, we don’t see people like you,” and told her to go somewhere else. Those kinds of experiences are personally devastating, obviously. And then if you’re rejected at a place like that, how brave are you going to be to go and get the health care you need somewhere else? Is she going to have sex without the birth control that she had wanted and risk an unintended pregnancy? Is she going to have breast cancer undetected and have it only detected at a really advanced state because they didn’t want to see her? It takes courage to go to places for services where you know historically you’ve been rejected.
There are so many worthy causes out there—why should people pay attention to your work?
Well, the world must pay attention to our work because, first of all, we demand it. We demand equality. But practically and realistically, women with disabilities are 20 percent of the world’s women, and we can’t afford to leave that many women behind. Our world needs all of the brilliant minds, the hard workers, and the thoughtful leaders we can find, because we have so many problems to confront as a world. And so you can’t leave one-fifth of the women out of that work.
What does equality look like to you?
Equality is a really complicated concept. There are many dimensions of equality. And I think that equality draws from looking at all different aspects of our lives.
At Women Enabled International, we talk about transformative equality, which is really looking at women’s rights and disabled women’s rights in a much broader context. Not just if a person has access to a room or access to educational opportunities, but something that really makes a dynamic change in the lives of women. Something that ensures that women are free from violence. Seeing all of those things as a totality to make absolutely certain that the lives of women are, in fact, transformed.