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Nobody Left Behind? The lives of indigenous women with HIV

HIV rates are driven by widespread global inequalities. What will it take to put the human rights of indigenous women living with HIV on the global map?

At the Vancouver International AIDS Conference last month, some of the sessions echoed 2014’s Melbourne International AIDS Conference by beginning with a powerful acknowledgment of the ancestral owners of the land on which the event was being held and their current descendants. In Vancouver these are the Coast Salish People, Squamish, Musqueam and Tsleil-Waututh, to whom their Northwestern Pacific territory is better known as part of ‘Turtle Island’.

What is rarely recognised however, let alone acknowledged, are the enormous rights violations that these and all indigenous peoples – especially women - face around the world in relation to our health, our well-being and HIV. At the Melbourne AIDS conference, where the official conference Declaration was entitled “Nobody Left Behind”, we had, for the fourth time, an Indigenous People’s Zone where we sought to address some of the issues we face.

No such civil society zone existed at the more science focused Vancouver AIDS conference last month. Nonetheless we sought to make our presence felt there also.

Indigenous Australian women have 3-5 times more HIV than non-indigenous born Australian women. 50% of young indigenous women in remote Australian communities have chlamydia and gonorrhea. With poor rural health services, these stark figures are on the increase. As an indigenous woman living with HIV from Aotearoa (also known as New Zealand), I came to the Melbourne and to the Vancouver Conferences to put the rights of indigenous women living with HIV on the global map.

In Vancouver, I was privileged to be asked to provide the ‘Community Voice’ at the conference closing session.  In this I declared:

Despite all the advances in HIV, despite all the goals and strategies – despite all the good will, despite the UNAIDS 90 90 90 Fast-Track strategy, despite the UNAIDS ‘Gap Report’ identifying all those left behind, I am here to tell you that indigenous people have been left behind and unless things change we will continue to be left behind. 10 10 10  is our reality.”

Canadian Aboriginal people make up 3% of the total population, yet make up   12.2% of the people newly acquiring HIV and 8.9% of the total number of people living with HIV in Canada. HIV transmission from injecting drug use amongst Canadian Aboriginal people is nearly five times higher than for other Canadians.

There are about 5,000 indigenous groups globally, making up 400 million, or 4.5% of the world’s population. We are the oldest continuous cultures on earth and often inhabit remote places with the highest levels of bio-diversity.  We live in the Arctic, North Central and South America, Africa, South and South-East Asia, China and of course the Pacific. We constitute 10% of the world’s poorest populations. Many of us live in small communities, so the effects of HIV on our communities can be huge. Globally our HIV rates per 100,000 population in 2011 were 178 in Canada, 30 in Australia, 22 in New Zealand and 21 in North America.  These HIV rates are driven by widespread global inequalities in the social determinants of our health, fuelled by stigma, discrimination and racism against our peoples.

Marama Pala in front of the quilt of the Indigenous International Community of Women living with HIV

HIV is widely transmitted amongst us heterosexually and through injection drug use and particularly affects our women and young people. As indigenous Australian epidemiologist, James Ward, stated in his plenary presentation at the Melbourne AIDS conference, "indigenous women are absolutely over-represented in HIV epidemics among indigenous populations."

Indigenous communities also continue to be colonised by others, who seek and seize scarce resources such as oil, precious minerals and other natural resources from us, whilst we still have scant recourse to justice to reclaim our ancestral ownership. Such chronic theft of our natural resources is deeply detrimental to our psycho-social as well as our material and physical well-being, and inevitably contributes to mass unemployment, addictive behaviours and consequent health problems. Colonisation and the persistent hegemonic view that continues to regard indigenous cultures as inferior have contributed to the limited availability of Western health services in our communities, and to the gaps between indigenous peoples and the non-indigenous population in sexual and reproductive health and rights and the prevalence of HIV in our communities.

The fundamental human rights issues facing indigenous woman run broad and deep. They include the right to have access to traditional and appropriate sexual health services, sex education and HIV awareness. For women, the perceived inferiority of our indigenous status is exacerbated by misogyny, our remote locations, economic status, sexual orientation, marital status and disability. We experience these not only from non-indigenous people but also increasingly from indigenous men who are practising the Western behaviour they have been taught.

Whilst the reality shows that indigenous women are living in environments of high gender based violence, increased levels of sexual violence and alcohol abuse, low education, and high rates of unwanted pregnancies, sexuality is still a largely taboo subject amongst many indigenous communities. Not talking about sex has been categorized by outsiders as a cultural and traditional practice of indigenous peoples, but this construct has stemmed from the spread of Victorian values by our colonisers. Pre-colonisation, we had coming-of-age ceremonies and rites of passage, designed to educate youth on all subjects of sexual health. These were banned by our colonisers. Within some cultures these were still ‘discreetly’ preserved and  are now still held in secret due to the imposition of other cultures and value systems. 

From a personal perspective, I can confirm that as a young Māori woman raised in a large Māori family, I experienced differing levels of physical and sexual abuse, rape, drug and alcohol abuse, gender-based violence; oppressive behaviour, poverty, and crime. My upbringing lacked any sexual education, rites of passage, or empowerment as a woman, limiting also my children’s ability to inherit the traditions and culture we have left.

Everything in my own personal upbringing contributed to the moment when I contracted HIV at the age of 22 in 1993. Placing me as a minority within a minority within a minority. I was also told then to forget having children, as the chance of transmission is so high.  I had not only been given a death sentence, but also told that I could not contribute to my community either culturally or traditionally. Culturally, HIV had impacted my entire family, extended family and community.

After 12 years of believing that I could not have children, in 2005 I was told that because of medical improvements there was no reason I couldn’t have children. I had been single for 6 years. This is another issue for indigenous women living with HIV: disclosure of HIV status generally leads to rejection of potential spouses. Then I was given an opportunity to meet with other Pacific people living with HIV. It was here that I met my future husband and was able to have two healthy HIV negative children: allowing me to traditionally pass on the knowledge and lands I inherited. Lands which we Maori still own but which we cannot develop, live in or utilise, thanks to colonial and post-colonial legislation.

I have suffered stigma and discrimination and have been described as an irresponsible mother, placing my children at risk should their father or I perish. The adopted and imposed view towards HIV within Māori society is that I should not have the inherent birthright to procreate. Therefore, for the life span of my children (9 and 6 years) I have been defending my right to bear children, of mixed heritage and facing stigma and discrimination within New Zealand society towards our ‘AIDS Family’. My children too, now are facing the same discrimination in schools and the wider community.

Organisations I have helped to found nationally and internationally have advocated for the right to have culturally and traditionally based sexual and reproductive health policies and programmes in New Zealand and globally, and challenged and exposed the disparities within the current structures. These organisations have utilized the United Nations Declaration for the Rights of Indigenous Peoples, the International Labour Organisation – C169 – Indigenous and Tribal Peoples Convention 1989, The Toronto Charter 2006, and te Tiriti o Waitangi as guiding policy documents. All declare the right to self-determination and to make decisions as indigenous peoples for indigenous peoples.

The common thread that runs through both high-income countries and the “developing” countries is the lack of human rights-based approaches that empower indigenous women in both HIV prevention and care. This is further complicated by the lack of disaggregated data, and the homogenizing of indigenous peoples within the dominant race.

While Londoners celebrate the indigenous art of Aboriginal Australians in the British Museum and questions are raised about who is authorised to tell the story of the artefacts displayed and on whose terms, my hope is that article will also help to bring much-needed attention to the plight of indigenous women worldwide.

Since 2006 indigenous people have been able to hold a pre-conference gathering before each International AIDS Conference. This has helped somewhat with raising our voice and attracting the attention of our governments.  But there is still much work to be done to put us on the map in the global response to HIV and AIDS. Nothing about us without us!

Read more articles on 50.50's platform AIDS, Gender and Human Rights

About the author

Marama Pala is an indigenous woman living with HIV and the mother of two children, and hails from the people of the river (Ngatiawa no runga i te rangi) New Zealand Māori. She has lived with HIV for 22 years. Marama is the Co-chair of the International Indigenous working group on HIV & AIDS, the Chair of the International Council of AIDS service organisations (ICASO.org), and a member of the Communities Delegation to the Global Fund on HIV, TB and Malaria, and the Executive Director of INA (Māori Indigenous & South Pacific) HIV/AIDS Foundation.


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