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One in Every Fifth Sister – At the Door

Between the words – what is the message?

As disability scholar and activist, Martina Shabram wrote in a recent article about how Zika reveals our societies’ prejudice about disability, “too often, the narrative surrounding microcephaly relies on familiar – and disturbing – assumptions about what kind of lives are worth living.”

Zika is being used as a wedge to expand reproductive rights and access to abortion. This has been done, for the most part, without considering the impact of the underlying message

  • that producing babies (or adults) with microcephaly (or any disability) should be avoided at all cost,
  • that the situation of people with disabilities in society is less important than the situation of (presumably non-disabled) mothers/women, and
  • that women with disabilities who are also pregnant and dealing with multiple layers of discrimination in this situation are not worth discussing.

Multiple identities – breaking out of the box

We seek to frame a discussion that reflects the inherent rights and dignity of all affected by the Zika virus based on an intersectional disability and women’s rights perspective.

In our work with the disability community throughout the world, and specifically with organizations of women with disabilities, we have too often found that people with disabilities are defined by impairment and not by any other identity. With a disability, you are not a woman; not indigenous; not black; not a lover or a mother. With a disability, you have specific needs, but presumably, not needs like everyone else – to live in a family, to access education, to be employed, to access justice when needed, to vote.

The view of the majority of people around the world is that if you have a disability, that’s your (medical) problem.

Ten years after the adoption of the UN Convention on the Rights of Persons with Disabilities, this needs to change.  The Convention paved the way to show the world that disability is about societal, attitudinal and environmental barriers - barriers that society can do something about, barriers that can be addressed to open the door and start dialogue. 

Where are women with disabilities?

In a recent mapping, Women Enabled International identified 90 organizations of women with disabilities across the globe. For the most part, these organizations are emergent, small, and extremely poorly resourced.  Still, they are working and demanding their rights and making change happen. And, the main issues they are addressing? Violence and access to sexual and reproductive health services. 

According to a 2012 report by the UN Special Rapporteur on Violence Against Women, Rashida Manjoo, the rate of violence - including gender-based and sexual violence - against women with disabilities is 3-4 times higher than for women without disabilities. And, in most places where the Disability Rights Fund and Women Enabled International work, women with disabilities have no physical or informational access to sexual and reproductive health services, or to violence prevention, or justice services.

And, for the most part, women with disabilities are not included in local women’s rights movements. 

With one billion people with disabilities around the world, that is at least one in every fifth woman who is excluded.

Opening the dialogue and the definition of women

The upcoming AWID Forum in Brazil – which will include more women with disabilities than ever before (but still not 19%) - provides an opening to start addressing the barriers and fostering greater collaboration between the women’s rights movement and the women with disabilities’ rights movement – which should be the same movement after all!

We see the Forum as an opportunity to start discussing key questions, such as the following:

  • How can we build strong coalitions between women’s rights and women with disabilities’ rights organizations?
  • How can we make events such as AWID, Women Deliver and other women’s rights conferences more welcoming to, accessible, and inclusive of women with disabilities?  How can we address the fact that women with disabilities (who often have limited financial resources due to their greater economic poverty) usually cannot afford to attend such conferences?
  • Why are women with disabilities only on panels addressing disabled women’s issues and not on other women’s rights panels?  Women with disabilities are women too!
  • What steps can we take to encourage women’s rights advocates to join us at disability focused events such as the annual UN Conference of States Parties to the Convention on the Rights of Women with Disabilities to work together to get greater attention to the rights of women with disabilities?
  • How can we frame discussions around a woman’s right to abortion from both a women’s rights and a disability rights perspective to foster greater collaborative movement building and avoid disability stigmatizing?
  • Why are women with disabilities often missing from discussions of gender-based violence and sexual and reproductive health and rights?

Only by tackling these questions in an open and positive atmosphere of inclusion can we begin to expand the women’s rights movement and gain traction by widening the demand for change.


About the authors

Diana Samarasan is Founding Executive Director of the Disability Rights Fund and the Disability Rights Advocacy Fund– which provide resources for people with disabilities in the Global South to advocate for equal rights and opportunities. Diana’s work turns the "charity" model on its head by involving beneficiary communities in decision making within the Fund and in society.

Diana is also on the Steering Committees of International Human Rights Funders' Group and Opportunity Collaboration, and on the Board of the US International Council on Disability. She has an MPA from Harvard’s Kennedy School. 


Stephanie Ortoleva is the Founding President and Legal Director of Women Enabled International (WEI). WEI advocates and educates for the human rights of all women and girls, emphasizing women and girls with disabilities, and works tirelessly to include women and girls with disabilities in international resolutions, policies, and programs addressing women’s human rights and sustainable development through collaboration among organizations of women and girls with disabilities and women's rights organizations. Stephanie was named a Women's ENews 21 Leaders 2016 - she Rises Up for disabled women and girls! Stephanie received her law degree from Hofstra University Law School with outstanding academic honors.

Read WEI’s Talking Points Zika, Microcephaly, Women’s Rights and Disability Rights


This blog follows a previous post written by Laila Malik: Let’s not just open the door, let’s open the dialogue

[Photo: Disability Rights Fund Program Officer, Yolanda Munoz, meets with activists with disabilities in the Peruvian Amazon.]

AWID Forum