Nothing About Us, Without Us: Setareki Macanawai on the Indigenous Persons with Disabilities Movement

Setareki S. Macanawai (Indigenous Fijian) is currently the CEO for the Pacific Disability Forum based in Suva, Fiji. Prior to the Forum, he served as the executive director of the Fiji National Council for Disabled Persons and as principal of the Fiji School for the Blind. Macanawai is a leading disability advocate in Asia and the Pacific region and has served on the committees of many international and regional organizations concerned with disability, including as chairperson of the steering committee of the Indigenous Persons with Disabilities Global Network and as founding member of the Disability Inclusive Development Reference Group of the Australian Aid Programme. In the latter role, he provided guidance on disability inclusive development to help shape the implementation of Australia’s Development for All strategy to ensure that the aid program fulfills Australia’s obligations under international law. Macanawai is blind and spoke with Cultural Survival’s Kaimana Barcarse at the 14th session of the UN Permanent Forum on Indigenous Issues in April 2015 about the Indigenous Persons with Disabilities Global Network.

Kaimana Barcase: What was your main purpose for being here?

Setareki Macanawai: For us, Indigenous persons with disabilities, our main message is what we have been championing: the intersectionality of Indigenous people on one hand, and persons with disabilities on the other hand. When we talk about Indigenous persons with disabilities, sometimes we fall in the middle as part of the intersection. Then the issue is we should be recognized within that intersectionality, we should be allowed to participate fully and effectively as Indigenous persons with disabilities, and also to continue to advocate for inclusion in matters that concern Indigenous Peoples and persons with disabilities.

KB: Can you give us some examples as to some of the obstacles that you and your team have experienced?
SM: Yes, we have a network, Indigenous persons with disabilities from Africa, in Kenya, from Fiji, from Papua New Guinea, from Canada, from Mexico, Bangladesh, also from Nepal, and even as far away as Greenland, and also some other countries in Latin America. One of our struggles, we are a young network. We [are] fairly new in terms of us as an organized group; that [was] made possible when the Disability Rights Advocacy Fund funded participation at the 2012 Permanent Forum. So one of the issues is participation; participation can be costly. And as Indigenous persons with disabilities, sometimes our participation costs, we cannot afford.

Within the participation is the issue of accessibility. We have a friend, Manase Ntutu, from Kenya. He was not able to attend our meetings in the past two years largely because of that—having to travel from the rural area, the inaccessible terrain, to the closest airport. And because of the inaccessibility of the terrain, the unavailability of accessible transport, he couldn’t make it. He missed the flight. And the issues of participation in schools, within our own community; the general trend that children with disabilities, particularly in developing countries, are taken off to special education institutions away from their homes, and having to learn away from the comfort of their own home, own family, their own community. These are a few of the challenges that we are facing. And the big one about our own identity as Indigenous people and as persons with disabilities, and how we can get the best out of these two worlds, so to speak, so that we are included in both.

KB: What are some examples of how it differs to be Indigenous people with disabilities? What are some of the extra challenges?

SM: Yes, in my own experience, our community, we are communal people as Indigenous people. And as communal people living in communities, we take care of our own, we look after what we often refer to as the unfortunate or the less fortunate or the vulnerable groups—which include us, persons with disabilities—or the widows or the orphans that we’ve been hearing at this meeting. In the social fabric of our community, we are caring and we are supportive. So in that regard, persons with disabilities, Indigenous persons with disabilities, we [are] taken care of. When you challenge that—when you turn that upside down in terms of empowerment, in terms of independence, in terms of voice and participation, when we as Indigenous persons with disabilities are able to have our own voice, our own say, in a place of consonance, as opposed to Indigenous people or the other sector, persons with disabilities speaking on our own behalf, our issues [are] not clearly articulated the way we want to. So for us it’s finding the right probable equilibrium between the two worlds, as I referred to earlier, and how best we can remain Indigenous Peoples— Indigenous people with disabilities, and persons with disabilities with our Indigenous origin.

KB: What are some of the successes that you’ve had so far in your fight for this access?

SM: We, as a network, we are fairly young. We only established ourselves [in] 2013, so really, two years ago. Within that time we have formed ourselves, formed a group. As I said, we are currently funded by the Disability Rights Advocacy Fund supported by the International Disability Alliance. What we are able to do is to ensure that we are included and participating [in] the UN Permanent Forum. This is the third UN Permanent Forum we have attended. We already had a study about our issues by the session [of] the Permanent Forum that was presented in 2013. We appeared quite visibly in the Outcome Document of the World Conference on Indigenous Peoples held last year, and throughout the UN Permanent Forum we are now an established caucus—just like the Women’s Caucus, the Youth Caucus, we now have a Disability Caucus. And we are increasing our reach in our network to other countries that have Indigenous persons with disabilities groups to be part of the movement.

KB: Where do you see yourself and your organization, and the caucus, in the next five to ten years?
What I’d like to see is that this work is translated down to the regional level; we would like to see a Disability Caucus actively engaging at the regional level. And then down to the next level, down to the national level. Now we can be as a group [to] claim that space and participation. All that will need work; how we can identify, organize ourselves, and support it to participate. So for us, [it] is the strengthening of this network, the caucus at global level. But for the next five to ten years our work is really in our communities, in our countries, and then having a mechanism at the regional level where we can now share [how] cultures may be similar so we can share at the regional level and then have even a stronger way, a sort of platform, to lobby our issues at the global level.

KB: What words of advice would you give to others who would offer up assistance to your cause?
SM: Our slogan that we are using quite a lot is part of the disability movement’s logo: “Nothing About Us, Without Us.” Or in this case, “nothing about Indigenous persons with disabilities without Indigenous persons with disabilities.” Any support given to us will best suit our needs when we are consulted. So please, talk to us. Our issues are enormous, but they are not insurmountable. Together, we can make a difference. Thank you. 

Photo: Setareki Macanawai. Photo courtesy of Broddi Sigurdarson/UNPFII. 

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