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Nothing About Us Without Us: The Struggle for Inclusion of Indigenous Women with Disabilities

Pratima Gurung (Gurung) became disabled at the age of seven after she lost her hand in an automobile accident. She has spoken about how her parents valued education and made sure she received a quality education, a rare opportunity for most Indigenous women and women with disability in Nepal. Today, Gurung is leading the advocacy effort for women with disabilities and Indigenous women in Nepal and internationally. She is the general secretary for Indigenous Persons with Disabilities Global Network and Nepal Indigenous Disabled Association (NIDA), chair of the National Indigenous Disabled Women Association Nepal (NIDWAN), and a faculty member at Padma Kanya College in Kathmandu. Indigenous Peoples comprise more than 35 percent of Nepal’s population, and persons with disabilities make up at least 1.94 percent of that population. Gurung is fighting for access, inclusion, and participation in decision making, and collective rights of Indigenous women and persons with disabilities, as the current Nepalese constitution does not ensure full and effective participation of all Indigenous Peoples at all levels due to their exclusion in the document’s drafting process. Cultural Survival’s Dev Kumar Sunuwar spoke with Gurung about her work at this year’s UN Permanent Forum on Indigenous Issues in New York.

Cultural Survival: Please give us a brief background about the challenges facing Indigenous Peoples, and particularly Indigenous women with disabilities.

Pratima Gurung: If you look at the global data, we are 54 million Indigenous people with disabilities all around the globe. When it comes to my country, Nepal, we are 1.3 million Indigenous people with disabilities. When when we look at the overall population of women and Indigenous women in Nepal, we have about 7 million women with disabilities in Nepal. The first challenge I experience as an Indigenous woman with disabilities is about meaningful representation. It involves who you are, where you are represented. Because as soon as you are a woman, and an Indigenous woman, and a woman with disabilities, all of these identities keep you limited within the four walls. It comes to a point that your voice, your representation, your identification, and your recognition is the primary thing, and that begins from home, from the family, from the private sphere to the public sphere. The second challenge is about being disabled and the stigma associated with it. When you are a woman with disabilities, you have many serious and critical issues related with your life. The third thing is insuring your basic fundamental needs, like education, your social background, your economic status, your employment opportunities, your accessibility.

CS: What is it like to lead the Indigenous Peoples with disabilities movement as an Indigenous woman?

Pratima: It has really been a challenge for me. I was working for the Indigenous Peoples’ movement in 2001, looking over all the holistic dimensions of Indigenous women. As a researcher in the field, I was working with people with disabilities’ issues and I was not able to identify the issue of Indigenous people with disabilities or Indigenous women with disabilities. I began to realize that Indigenous women with disabilities are not able to make their voices heard. That made me question even myself as an Indigenous woman with disabilities: What am I contributing to my community, and what is my role? That was the dilemma for me, whether to move within the Indigenous movement or to move forward within the disability movement. So, I thought, why not have intersections of Indigenous and disability.

I got an opportunity to work with the International Disability Alliance as a fellow in 2013. That was the turning point for me: why not work on the issues of Indigenous people with disabilities in my own country? Nepal has so much diversity, not only in terms of religion/language, but also in terms of human diversity. That led me to move forward in working on Indigenous people with disabilities and also Indigenous women with disabilities, to also raise the issue at the global forum, in the international forum, even the United Nations. Disability has become a cross-cutting issue. How can disability issues be sensitized within the Indigenous movement and discourse, and how can the disability movement in the discourse value and integrate Indigenous values and practices? These are the things we are focusing on collectively from the ground and to the national level and international level.

CS: You have been involved in Indigenous Peoples’ issues for about two decades. Could you share guidelines for how Indigenous women can take the lead?

Pratima: First, I really want to highlight the effective and meaningful participation of Indigenous women at all levels. Today we want Indigenous women at the table, we want them to make their decisions, we want them to make their concrete ideas known about the issues and concerns that are affecting their lives. We don’t want others who would make a decision and an agreement on behalf of us. Indigenous women with disabilities have to be brought to the frontlines by their effective and meaningful participation. The second thing is about the level of awareness and active engagement at the national level and at the grassroots level, to bring a collective and collaborative approach to raise the issues that Indigenous women with disabilities are facing not only within the Indigenous women’s movement, or Indigenous Peoples movement, but beyond it. We have to look at it in a very comprehensive can we collaborate and move forward to face these challenges with our government, the United Nations, and all the relevant stakeholders.

CS: What are some of the core rights guaranteed by the international human rights treaties or conventions?

Pratima: The Convention on the Rights of Persons with Disabilities (CRPD) is an evolving and recent human rights treaty body. In the preamble B, it mentions Indigenous identity. Also, if you see the number of recommendations in the concluding observations that have been provided by the CRPD Committee to a number of member states, we can clearly find the issues of Indigenous people with disabilities or Indigenous women with disabilities reflected in those documents which state that these groups are marginalized, vulnerable, and excluded within the disability discourse and movement. For example, the recent CRPD concluding observations given to Nepal and also the Committee on the Elimination of all Forms of Discrimination Against Women (CEDAW) concluding observations that have been provided to Indigenous women and women of Nepal. These two documents clearly highlight some of the emerging issues, like intersectional discrimination, and how Indigenous people with disabilities are vulnerable and in very dire situations; the earthquakes and other natural disasters and climate change have been clearly mentioned in those documents. Treaty bodies like the CEDAW are drafting a general recommendation that is specifically on Indigenous women. We also want to highlight the issue of intersectional discrimination so that other marginalized women like Dalit and Muslim women with disabilities in my country can be integrated. At the global level, we are trying to connect with the special rapporteurs so their reports and recommendations will highlight and reference these documents.

“. . . we want Indigenous women at the table, we want them to make their decisions, we want them to make their concrete ideas known about the issues and concerns that are affecting their lives. We don’t want others who would make a decision and an agreement on behalf of us. Indigenous women with disabilities have to be brought to the frontlines by their effective and meaningful participation.”

CS: What is the global situation for Indigenous Peoples living with disabilities?

Pratima: We have been highlighting not only at the Permanent Forum, but in the global arena, that the situation of Indigenous people or Indigenous women with disabilities is very critical. Our goal is to come up with a very intensive and comprehensive global report on Indigenous people with disabilities. We have networks in Latin America, Asia, and Africa. We are also trying to push the Permanent Forum members to bring disability into the main agenda. We have been doing this followup meeting since 2012, which has brought attention to the Permanent Forum members about the sensitivity of including and integrating disability issues. By bringing these things as a main agenda point, I think we will be able to reach other Indigenous brothers and sisters in other parts of the globe, to hear their voices and issues and concerns and to network and collaborate with them. We hope still to integrate in the Indigenous persons with disabilities global network so that we can collectively raise our voices in the global arena.

The Sustainable Development Goals slogan is “leave no one behind.” Since we are working on the ground, we have to keep these things in mind about who is not in the room while we are having a discussion. We need to figure out those groups, and we need to have policies and strategies to bring them inside the room so that their voices will be heard and integrated. People with disabilities are still being left behind, and we have to mainstream and integrate if we are working as human rights activists for an inclusive society. Thank you.

Photo by Dev Kumar Sunuwar. 

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