Visibility and Its Real-World Implications

by Hope Randall

Background image of open water. Black text in a white box reads, "Visibility and its Real-World Implications by Hope Randall." The image has a dark blue border.
Background image of open water. Black text in a white box reads, “Visibility and its Real-World Implications by Hope Randall.” The image has a dark blue border.

In my work as an advocate for greater awareness of the global burden of diarrheal disease and the tools that can help solve it, I’m struck by how illness is so often a proxy for inequitable access to basic needs. There’s even a term for it: “diseases of poverty.” Diarrhea is rarely a killer in places like the United States, but is the second leading infectious killer of children in places where access to healthcare and clean water and sanitation are poor. Access to the most basic tools is the deciding factor between living and dying.

As usual, women bear the brunt of this crisis and on multiple fronts, particularly when it comes to the consequences of unsafe drinking water and sanitation. Women spend many hours a day collecting water for their families that may not even be safe to drink, and a lack of toilets exposes them to the danger of sexual assault when they seek privacy under the cover of darkness. The long-term effects of repeated enteric infections – malnutrition and stunting – follow girls throughout their lives as they become malnourished mothers that give birth to underweight babies. The cycle is multigenerational.

“As usual, women bear the brunt of this crisis and on multiple fronts, particularly when it comes to the consequences of unsafe drinking water and sanitation.”

It stands to reason that women and girls with disabilities fare even worse. Unless their voices are heard, toilets that do come to the community will lack the necessary accommodations to improve their quality of life, and we will fall short of the equitable access aspirations set by the Sustainable Development Goals and the Declaration on Universal Health Coverage.

Encouragingly, the rights of people with disabilities are gaining momentum. The theme of last year’s World Water Week was “leaving no one behind.” Many sessions reinforced the importance of designing sanitation programs with populations facing increased barriers in mind, as this is much more economical and streamlined than retrofitting facilities after they’ve been built. WaterAid has several great examples of how they have woven inclusive approaches into their programs. They start with a local landscaping of the opportunities and challenges of people with disabilities, tailoring solutions to a community’s needs.

Advocacy at all levels has made these conversations possible. Visibility has real-world implications; those who are invisible are less likely to be included in data that guide policy decisions and program implementation, and this is what makes the work of WEI so essential. Only where women and girls with disabilities are seen can we bridge the gap of access to the most basic of human needs, and the most basic of human rights. ♦


About the author Hope Randall is a Digital Communications Officer at PATH, a global team of innovators working to eliminate health inequities so people, communities, and economies can thrive. Learn about PATH’s Defeat Diarrheal Disease Initiative at www.DefeatDD.org.

40 Years of CEDAW: Keeping Women with Disabilities on the Agenda

by Amanda McRae

A group shot of disability advocates from Sisters of Frida and Women Enabled who attended the 2018 UK CEDAW Review. Amanda is pictured on the far right wearing a red dress. To her right is Rachel from Sisters of Frida. Ana Peláez is in the center standing behind Eleanor Lisney from Sisters of Frida, who is sitting in a wheelchair with her legs crossed. On the left are two other women’s rights advocates from the UK.
WEI partner Sisters of Frida, WEI’s Director of UN Advocacy, and Women’s Resource Centre meet in February with CEDAW Committee member Ana Pelaez to discuss the rights of women with disabilities in the UK and worldwide (Photo credit: Sisters of Frida)

This week marks the 40th anniversary of the U.N. Convention on the Elimination of All Forms of Discrimination against Women (CEDAW). This human rights treaty, to which almost every country has signed on, has helped transform the world by providing a legal framework to ensure the respect, protection, and fulfillment of the rights of all women and girls, including women and girls with disabilities.

But for much of that 40 years, women and girls with disabilities have been left off of the women’s rights agenda in almost every country. The CEDAW Committee—the expert group that monitors CEDAW around the world—has long recognized the unique discrimination women with disabilities experience and has called on States to include women with disabilities in their gender equality efforts and to collect data on this group (to “measure what we treasure”).

We at WEI have seen, however, that women with disabilities are almost always invisible in the laws, policies, programs, and data collection efforts that those States put in place to ensure the rights of both women and persons with disabilities.

Earlier this year, I attended the CEDAW Committee’s periodic view of the United Kingdom and saw firsthand how States invisibilize disabled women. We worked with Sisters of Frida, a U.K.-based collective of disabled women, to report on continuing abuses against disabled women in the U.K., including gender-based violence, lack of access to employment and social benefits, and violations of sexual and reproductive rights. Sisters of Frida and I traveled to Geneva, Switzerland, to witness the CEDAW review, and when the CEDAW Committee repeatedly asked the U.K. government about the situation of disabled women, it was clear the U.K. representatives had no clue. They instead cited statistics on women and disabled persons more broadly and had little to no information on the specific situation of disabled women.

This was demoralizing, as the U.K. government clearly did not “treasure” disabled women. But it was also affirming, because our concerns were being recognized and promoted by the world’s leading experts on women’s rights, who are holding countries like the U.K. to account. I’m not sure women with disabilities would have been so robustly included in the women’s rights agenda 40 years ago.

There is hope that the next 40 years of CEDAW will bring about profound and positive changes in the lives of women with disabilities, as the world is increasingly recognizing the need to ensure the rights of women in all of our diversity.

Indeed, in 2018, the first disabled woman—Ana Pelaez Narvaez of Spain—was elected to serve as an expert on the CEDAW Committee and is already having an impact on the Committee’s work holding States accountable for ensuring the rights of all women and girls, including women and girls with disabilities. Her presence on the Committee is showing States that they cannot ignore women with disabilities, and it is also starting to show women with disabilities that their voices and contributions are valued in women’s rights spaces. ♦


About the author Amanda McRae is the Director of U.N. Advocacy at Women Enabled International, where she represents WEI at the U.N. in New York and Geneva and develops strategies to advance the rights of women with disabilities through U.N. human rights mechanisms and other institutions. She previously served as a researcher at Human Rights Watch focusing on Europe and Central Asia and disability rights worldwide, and a global advocacy adviser at the Center for Reproductive Rights.

A Word of Welcome

by Stephanie Ortoleva

A cartoon illustration of a series of orange, blue, and yellow books sitting on a dark teal shelf. The background is light teal.
A cartoon illustration of a series of orange, blue, and yellow books sitting on a dark teal shelf. The background is light teal.

Welcome to the Women Enabled International Blog – Rewriting the Narrative with WEI! This is a new space we are launching to showcase the voices, opinions, and stories of women with disabilities and allies championing the rights of women and girls with disabilities worldwide. We hope that you will find the posts here both informative and thought-provoking.

Much of Women Enabled International’s work involves legal language and complicated international human rights procedures. It is my hope that Rewriting the Narrative can be inviting for both experts and those less familiar with the issues to learn about our work and the work of our colleagues from around the world in the fight to bridge the gap between the disability rights and the gender rights fields.

The beginnings of Women Enabled International can be traced back to 2010. For many years, I worked in international women’s rights spaces and sometimes in disability rights spaces. In both, I found that disabled women were generally absent and ignored.  Something had to be done, and voila thus began Women Enabled International! We are the first international organization dedicated to advancing human rights at the intersection of gender and disability.

Since then, WEI has grown into a close-knit team with staff, board members, fellows, and interns from all over the globe. At least half of us have a disability ourselves or a family member with a disability; the other half are dedicated allies. What brings us all together – no matter from what continent or time zone we may be working – is our shared passion for disability justice, gender justice, and the radical potential of complete intersectional inclusion.

On Rewriting the Narrative, you will find posts by WEI staff, colleagues and advocates under the “Blog Posts” tab and updates on WEI’s work under the “WEI News” tab. We invite you to consider contributing to this blog and sharing your work and voice. If you would like to submit a blog post proposal, please complete the following form: Submit to Rewriting the Narrative.

Let us join together to rewrite the tired, incorrect, and pervasive narratives about women and girls with disabilities worldwide.

Yours in global sisterhood,

Stephanie


About the author Stephanie Ortoleva, the Founder and President of Women Enabled International, is a highly recognized international human rights lawyer, policy and development consultant, author and researcher on issues of women’s rights, disability rights and the rights of women and girls with disabilities. As a woman with a disability herself, she brings the development, academic and legal perspectives to her work as well as her personal experience as a woman with a disability.

Women Enabled Takes to the Streets to Demand an End to Period Poverty

WEI’s Anna Woodward attends the DC Rally on October 19, 2019. She is wearing white sunglasses and a red shirt and holding up a pink sign.

October 25, 2019 – On October 19, Women Enabled was honored to join over 30 non-profits, student groups, and community organizations to co-host the DC Period Rally on the United States’ first ever National Period Day! Organized by PERIOD Inc. and Seventh Generation, the DC rally was one of 60 rallies throughout 50 states that brought together all different voices to address the challenges of period poverty, menstrual inequality, and harmful stereotypes around periods.

Period poverty is a term used to describe a systematic lack of access to safe and sustained menstrual products due to financial barriers as well as societal attitudes. It includes a deficiency or absence of menstrual hygiene education, sanitary or bathroom facilities, and physical sanitary products.

The list of speakers at the DC Rally was diverse and boasted representatives from large, national organizations such as the National Organization for Women and Planned Parenthood. But, the most impactful speakers were young people under the age of 25 – even under 20 – who are student leaders on campus or who started their own non-profit organizations to fight for gender equality. Throughout all of the speakers, however, one message rang clear: menstrual hygiene is a human right.

A hand holding up a pink sign in front of the US Capitol Building that reads, “prioritize access and women and girls with disabilities in menstrual equality!”

With that understanding, the rally was an inclusive space of respect and recognition that not everyone who bleeds is a woman (like trans, nonbinary, and gender non-conforming people with uteruses), and not all women have periods (due to age, health conditions, or being a trans woman). Instead, the focus was on a larger disparity of access, of dignity and basic health care, and the ways that intersectionality of race, class, location, citizenship, being incarcerated, and more compounds and complicates those relationships.

Women and girls with disabilities face specific difficulties, pressures, and misunderstandings from society about their bodies and their health. This is especially true when it comes to menstrual hygiene. On top of unfair stereotypes about the very existence of menstruators with disabilities as well as their sexuality, menstrual products are often designed with non-disabled menstruators in mind and therefore inaccessible and even unusable. And, to add on to that, those products can be expensive- especially if you have to get new ones every month!

It was especially important for Women Enabled to show up and show out at the Period Rally because women and girls with disabilities are often overlooked and forgotten in these conversations about what is a basic issue of health, dignity, and gender equality. It is crucial that when these conversations happen, women and girls with disabilities are represented and their voices are amplified.

The goals of the Period Rallies and of PERIOD Inc. more broadly are to:

  1. End the “tampon tax” in the 35 remaining states that consider menstrual products a “luxury good” and therefore subject to value-added tax, while other products considered basic necessities enjoy a tax-exempt status
  2. Provide freely accessible menstrual products in every public school, prison, and shelter
  3. Elevate the conversation about period poverty to national and international levels

Women Enabled is proud to stand by these ideals and envisions a world where every person who bleeds can live with dignity, can freely obtain truly accessible products and educational resources, and is empowered to make choices about their own body.

#EndPeriodPovertyNow!

A group photo of members of Women Enabled with Nadya Okamoto, founder and president of PERIOD Inc., and members of MascOff. The group stands in front of the U.S. Capitol building holding signs about menstrual equality.

Women with Disabilities Submission to the Special Rapporteur on Violence Against Women: Mistreatment and Violence in Reproductive Health Care, including Facility-Based Childbirth

May 17, 2019 – This submission, intended to inform the Special Rapporteur’s forthcoming report to the U.N. General Assembly, outlines the causes, forms, and consequences of violence and mistreatment against women and girls with disabilities in reproductive health care settings, including childbirth settings. Drawing on examples from several countries, the submission highlights that women and girls with disabilities are subjected to forced reproductive health interventions, encounter physical, emotional, and psychological abuse in maternity care, and are more often stripped of their parental rights, due to discrimination, lack of provider training, and the inaccessibility of facilities, equipment, information, and communications.

The submission also outlines international human rights standards on respectful reproductive health care for women and girls with disabilities and provides the Special Rapporteur with recommendations for her report. This submission was drafted by Women Enabled International with contributions and endorsements from ten other organizations working to advance the rights of women and girls with disabilities around the world.

Download below.

Submission to the SR on VAW PDF

Submission to the SR on VAW Word Doc

WEI Submission on Older Women with Disabilities to the Special Rapporteur on the Rights of Persons with Disabilities

April 15, 2019 – This submission, which was endorsed by Ferdous Ara Begum (Gender and Ageing Issues Specialist and former UN CEDAW Committee member) and Lois Herman (Managing Director, Women’s UN Report Network), focuses on human rights issues faced by older women with disabilities, including gender-based violence, institutionalization, gaps in social protection, and barriers to accessing health care. This submission provides data on these issues, a human rights analysis of existing standards, and recommendations to States for how to ensure the rights of older women with disabilities in these contexts. WEI’s submission will inform the Special Rapporteur’s forthcoming report on older persons with disabilities, to be presented to the UN General Assembly in October 2019.

Download below.

WEI Submission to SR Disability on Older Women with Disabilities PDF

WEI Submission to SR Disability on Older Women with Disabilities Word Doc

***

10/28 UPDATE: Find the Special Rapporteur’s report here.

WEI and Disability Rights International Submission to the CEDAW Committee for its half-day of general discussion on trafficking in the context of migration 

February 14, 2019 – This submission to the CEDAW Committee was authored to inform its half-day of general discussion on February 22, 2019, to prepare for the elaboration by the CEDAW Committee of a General Recommendation on Trafficking in Women and Girls in the Context of Global Migration focuses on the trafficking of women and girls with disabilities.

In partnership with Disability Rights International (DRI), WEI enumerated the risks facing women and girls with disabilities to all forms of trafficking. Drawing on field research by DRI and the limited other available research addressing the intersection of disability and trafficking, this submission highlights the barriers and enumerates States’ duties to address the barriers that increase this risk- barriers to accessing information on trafficking and sexuality; isolation and institutionalization; social isolation and lack of quality interpersonal relationships; financial and caregiver dependence; impediments to accessing services and justice; unemployment and poverty; and risk factors inherent in global migration situations.

This submission also covers the need to include women and girls who become disabled as a result of being trafficked in policies and programs aimed at combatting trafficking. Lastly, this submission summarizes the relevant international legal standards and offers suggestions for inclusion in CEDAW’s forthcoming General Recommendation.

Download below. Submission is in English.

WEI DRI CEDAW Trafficking and Migration PDF

WEI DRI CEDAW Trafficking and Migration Word Doc

Submission to the CEDAW Committee for its 2019 Review of Colombia

Co-authored by WEI, La Liga Colombiana de Autismo, Asdown Colombia, Programa de Acción por la Igualdad y la Inclusión Social, and Profamilia

January 28, 2019 – This submission outlines human rights violations in Colombia that uniquely or disproportionately affect women with disabilities, as compared to other women. In particular, the submission documents that Colombian law allows women with disabilities to be stripped of legal capacity, which is a human rights violation in itself and also heightens the risk of other violations, including forced reproductive health interventions and denials of access to justice.

Download below.

CEDAW Colombia English Summary PDF

CEDAW Colombia English Summary Word Doc

***

Presentación de WEI, La Liga Colombiana de Autismo, Asdown Colombia, Programa de Acción por la Igualdad y la Inclusión Social y Profamilia ante el Comité CEDAW en el marco de su Revisión Periódica sobre Colombia

18 de Enero de 2019 – La presentación resume las violaciones de derechos humanos que afectan a las mujeres con discapacidad en Colombia de forma única y desproporcionada en comparación con otras mujeres. En particular, explica que la ley colombiana aún permite que las mujeres con discapacidad sean despojadas de su capacidad jurídica, lo que no solo constituye una violación de derechos humanos en sí misma, sino que además aumenta el riesgo de otras violaciones, como intervenciones forzosas en el ámbito de su salud reproductiva y denegaciones de acceso a la justicia.

Descarga aquí.

CEDAW Colombia PDF (Español)

CEDAW Colombia Word Doc (Español)

Making CSW Events Accessible to and Inclusive of Persons with Disabilities

January 17, 2019 – This document provides practical tips to organizations that will be holding events during the upcoming UN Commission on the Status of Women (CSW), being held from March 11-22, 2019, on how to ensure that those events are accessible to and inclusive of persons with disabilities. WEI staff also presented on this topic and distributed this document at the January NGO CSW Meeting.

Download below. Document is in English.

Making Your CSW Event Accessible PDF

Making Your CSW Event Accessible Word Doc

Submission on Women, Girls, and Non-binary Persons with Disabilities in the United States of America for the Human Rights Committee’s List of Issues Prior to Reporting (LOIPR)

January 14, 2019 – This is a preliminary submission that provides a brief overview of some of the civil and political rights violations facing women, girls, and nonbinary persons with disabilities in the U.S.  This submission provides a brief factual overview of the violations women, girls, and nonbinary persons with disabilities face concerning sexual and reproductive health, parenting, gender-based violence, and incarceration. It further provides suggestions for questions that the Human Rights Committee could include in its LOIPR on these topics as they affect women, girls, and nonbinary persons with disabilities. This submission was drafted by Women Enabled International and endorsed by Autistic Women and Nonbinary Network, Human Rights and Gender Justice Clinic at the CUNY School of Law, Inclusion International, U.S. International Council on Disability (USICD), World Institute on Disability, and Robin Wilson-Beattie.

Download below. Publication is in English.

WEI LOIPR Submission PDF

WEI LOIPR Submission Word Doc