Regional Feature: Nothing about us without us! HIV and Indigenous peoplesadmin
Regional Feature: Nothing about us without us! HIV and Indigenous peoples
HIV Australia | Vol. 11 No. 3 | October 2013
By Marama Pala (Ngātiawa Iwi)
Looking from outside the regional bubble of the Australian/New Zealand/Pacific Islands countries and territories, some might think that HIV is not an obvious Indigenous health priority.
At least, this is how it may appear when viewing epidemiological data. As the co-chair for the International Indigenous Working Group on HIV and AIDS (IIWGHA), I would say that the opposite is true.
Complacency, misinformation, stigma and discrimination will be the vehicle that HIV will use to ‘ride’ in to our community.
In addition, the social health determinants of health (education levels, unemployment, income, housing, and racism) places Aboriginal Australia/Canada and New Zealand Indigenous peoples as a vulnerable population to HIV and AIDS.
For 30 years, Indigenous people have been part of the epidemic and have either been not represented or, in some instances, misrepresented or overrepresented in the data.
As examples: Indigenous Australians were not accounted for in the first ten years of the epidemic in Australia; and as an example of overrepresentation, rates of HIV diagnosis in Canada among Aboriginal peoples are much higher than for non-Indigenous Canadians and affect population groups quite differently to those in New Zealand and Australia.1
Among these populations almost 60% of cases of HIV are attributable to intravenous drug use and almost 60% of cases are among women.2
For Australia and New Zealand, this is an indication of where Indigenous peoples of Oceania could end up – a place that none of us want to get to.
Poor outcomes in the social determinants of health are intrinsically linked to HIV vulnerability. These are issues that Indigenous peoples share in commonality across the globe.
Addressing HIV as a stand-alone issue in Indigenous and other vulnerable population groups is futile in many instances.
Research that encompasses the social determinants of HIV is as much a priority as HIV clinical trials; both must be ongoing, and should be thorough and mindful of both cultural and social determinants of health.
In response to the need for continued research and activism in this area, The International Indigenous Working Group of HIV and AIDS (IIWGHA) was formed to provide a vision and a voice that places Indigenous peoples at the centre of the response to HIV.
IIWGHA is made up of country leaders that include Aboriginal people living with HIV and other Indigenous champions of the HIV response – including men who have sex with men (MSM), people who inject drugs (PWID), sex workers, women and children.
We have five country leaders in the Oceania region:
- Michael Costello – Anwernekenhe National Aboriginal and Torres Strait Islander HIV/AIDS Alliance (ANA)
- James Ward – Baker IDI, Central Australia.
New Zealand and the Pacific
- Marama Pala – INA (Māori, Indigenous and South Pacific HIV/ AIDS Foundation)
- Dr Clive Aspin – INA (New Zealand) and
- Temo Sasau (formerly of Pacific Island AIDS Foundation) (Fiji).
We each represent marginalised communities; we work with organisations that provide culturally appropriate prevention, care, treatment and support; and advocate in the areas of prevention, treatment, care and support as well as identifying and addressing cultural and social determinants of HIV.
What are the issues for Indigenous Peoples living in Oceania? Where is our voice?
Too many times our voice, our place in the epidemic, is hidden or swallowed within the ‘at risk populations’ agenda.
For example, men who have sex with men will include Indigenous men who have sex with men; people who inject drugs will include Indigenous people who inject drugs; sex workers will include Indigenous sex workers; women and children will include Indigenous women and children.
This means that there is no definition or understanding of the social health determinants that separate us as Indigenous people within the ‘at-risk populations’. Let me explain some of the social health determinants I’m speaking of.
Indigenous social determinants of health
Political and social marginalisation
We are the original inhabitants of our lands, yet we lack political power. This places us at a power imbalance on our own homelands; we are always operating on the back foot and any Indigenous initiatives come under minute scrutiny.
Poor housing conditions add to our health disparities. All this makes it virtually impossible for us to improve our situation.
As Indigenous peoples, we are more likely to experience discrimination compared to non-Indigenous people, including when seeking to access: employment; healthcare; housing; welfare support; education; and government (local, state, national).
We are consistently the highest population of unemployed, and those who are employed are in low/middle income and have limited healthcare access or consideration. Neo-colonialism is threatening our ability to address this epidemic in colonised countries.3
The Patriarchal system that continually places Indigenous people as the ‘child’ in a parental relationship is a barrier when it comes to ‘nothing about us without us’.
This highlights the need to bring about social change and inclusion of strong Indigenous leaders at all levels within the HIV sector.
Which leads us to consider the ’academic industrial complex ’ experienced by Indigenous peoples – in particular women.4
Historically, academics working in the HIV sector have written documents, policies and guidelines about Indigenous people without full consultation and acknowledgement.
Many times these materials have been completely inaccurate; there are very few Indigenous Academics within this sector, again this becomes a ‘trust’ issue.
We trust our sexuality researchers and academics to represent us. But we have very few ‘ally’ academics in academia. Feminism has also not been kind to Indigenous women.
Discrimination comes in many forms for Indigenous peoples.
Poverty is a fundamental social health determinant that places Indigenous people at significant risk of chronic illness or disease.
The Māori population is disproportionately represented in New Zealand’s labour market. March 2012 figures from the New Zealand Department of Labour showed that 34% of Māori people were not part of the workforce due to unemployment, child rearing, and other reasons.5
The median weekly income for people receiving income from government transfers (which includes income from unemployment benefits and paid parental leave) is around $288 per week.6
We operate within generational sole parent communities dependent on the welfare system, which has contributed to discrimination against women and children, low graduation rates in higher educational establishments and lack of parity within government representation.
Racism Racism, some would say, is the same as discrimination. But it is more complicated than that for Indigenous populations.
Racism comes from a deep-rooted belief system that sees Indigenous people as inferior. Seen from this perspective, Indigenous people are placed at an inherent disadvantage just by being born Indigenous.
Because of many of the factors discussed above, survival for some of us involves criminal acts. Crime becomes a means of survival – feeding the family or constantly wanting for what we can’t afford.
As children, for some of us the experience of violence is commonplace in the home and so frequently becomes part of our lives as adults.
Basic life skills can be put aside and become less important than primal survival skills. This means that some of our parents lack the knowledge to teach us basic life skills, but expose us to primal survival skills – skills that we actually do need to survive.
A consequence of this skewing of ‘skills’ is that Māori number 50% or more of the prison population in New Zealand when we are only around 15% of the total population.7
Unmet health needs and distrust in health systems
Health disparities within Indigenous cultures are exacerbated because of a lack of trust in government services, including health services.
Discrimination, racism, institutionalised racism and high prison rates all contribute to this lack of trust.
Māori experience unmet health care needs more frequently than any other population group in New Zealand; in the 2011–12 period, two in five (39%) Māori adults had unmet primary health care needs – rates that are 1.5 times higher than the those found among the non- Māori population.8
Life expectancy is significantly lower for Indigenous people compared to non- Indigenous people. According to Statistics New Zealand, life expectancy at birth is 76.5 years for Māori females and 72.8 years for Māori males, compared with 83.7 years for non-Māori females and 80.2 years for non-Māori males.9
Accurate health data collection is highly problematic. Many Māori in the 1980s through to today would prefer not to be recorded as a New Zealand Māori, just in case this places us (individually) at a disadvantage – again, a trust issue.
Also, some of our population has been diluted so much that many who identify as Māori may have a physical appearance of being non-Māori, which can lead to inaccurate data collection.
Mental health and addictions
Globally, Indigenous peoples factor highly in the mental health and addictions statistics.
It is here we find the combination of the ‘mistrusts’ cited above and internal issues of ‘family’, where we find embedded behaviours of physical and sexual abuse.
Theorists have come up with possible reasons for abuse within Indigenous communities. These are numerous, but broadly include:
- that the thread of Indigenous societies has unraveled through the introduction of religion and nuclear families
- that the continual disempowerment of our men and women results in high rates of child abuse, child deaths, male assaults on women
- secrecy regarding incest and sexual abuse within the home. This can be deeply embedded and relates not only on the abusive act itself, but also to the perceived ability to have ‘power’ over an individual through fear and abusive trust because of the perpetrator’s own perceived feelings of disempowerment – linked again to colonisation.
- introduced belief systems that define homosexuality as a sin, damaging Indigenous people throughout the world. I can only mention my own people, where, prior to colonisation, same-sex relationships were accepted and these individuals were even revered as holding the spirit of both male and female. For Māori, such individuals were considered doubly blessed and treasured within our community. So too were those with mental illness (today’s definition); our perception of people displaying the ability to speak to spirits and gods as truly ‘touched’ by the gods has been eclipsed.
Next, consider HIV and Indigenous populations. Wrap up all the ‘birth right’ social health determinants listed above, then add in stigma and discrimination based on fear and ignorance of ‘another’ introduced pathogen. What are we left with? A very complex population facing a considerable threat.
What can IIWGHA do?
The concept of IIWGHA reaches back to 1988, where key people met and formed a network between the countries based on the common factors between each land.
It is the first of its kind to specifically address HIV and AIDS for Indigenous populations. We work at creating relationships between governments, Indigenous leaders, researchers and HIV/AIDS organisations.
Regionally, we are working together with government, leaders, researchers and HIV/AIDS organisations to hold an Indigenous Pre-conference in July 2014 in Sydney, in the lead-up to the International AIDS conference in Melbourne.
IIWGHA meets regularly via Skype calls at least six times per year and also meets face-toface whenever possible.
Members will be traveling to Saskatoon in Central Canada in September for a research conference and meeting to plan the next five years of research projects for IIWGHA.
At every International AIDS Conference since 2006, IIWGHA has held a pre-conference focusing on Indigenous people and HIV.
This has helped raise the visibility of Indigenous peoples within the context of the epidemic. Regionally, as we prepare for AIDS 2014, I am participating on the Community Program Committee of AIDS 2014.
This is my second term on this committee. My first was with AIDS 2012 in Washington, DC. Within our region we are also committed to increasing knowledge and addressing the stigma of HIV and AIDS within our Indigenous communities and supporting Indigenous-directed research and awareness initiatives by supporting the national Indigenous NGOs in their partnerships with non- Indigenous AIDS organisations and governments.
First Nations Inuit Health and Health Canada, and governments in the USA and Australia, have supported us financially. We have also received support from ViiV Healthcare Canada and MAC AIDS Fund.
We have 17 leaders from 11 countries including: Australia, Bolivia, Canada, Chile, Ecuador, Fiji, Guatemala, Mexico, New Zealand, Peru and USA.
We have two important policy documents – The Toronto Charter: Indigenous Peoples’ Action Plan on HIV/AIDS 200610 and the International Indigenous Strategic Plan on HIV & AIDS For Indigenous Peoples and Communities from 2011–2017.11
We attended the United Nations permanent forum on Indigenous issues this year, holding our own side event to bring HIV awareness to this arena.
We had a presence at the International Health Promotion and Education Conference in Pattaya, Thailand recently, informing participants about our contribution to the fight against HIV/AIDS.
In September 2013, we met in Australia with government, community leaders and NGOs in preparation for the 2014 Indigenous Pre-conference, to be held prior to the International AIDS Conference.
To define our mission and vision simply, would be to acknowledge and adapt the GIPA principles and slogan for Indigenous Peoples – Nothing about us without us!
Marama Pala is Executive Director of INA (Māori, Indigenous and South Pacific) HIV/AIDS Foundation in New Zealand and Co-Chair of the International Indigenous Working Group on HIV and AIDS (IIWGHA).
She is also a member of the Community Program Committee of the 20th International AIDS Conference (AIDS 2014); the Co-chair of the Global Village and Youth Pavilion Working Group.
Marama is a Māori Indigenous woman who has been living with HIV for 20 years.
1 Shea, B., Aspin, C., Ward, J., Archibald, C., Dickson, N., McDonald, A., et al. (2011). HIV Diagnosis in Indigenous peoples: a comparison of Australia, Canada and New Zealand. International Health, 3(3), 193–198.
2 ibid. Data about HIV status among indigenous communities was not collected prior to 1996.
4 Yee, J (ed.). (2011). Feminism for Real: Deconstructing the Academic Industrial Complex of Feminism. Canadian Centre for Policy Alternatives, Ottawa.
7 Department of Corrections; Policy Strategy and Research Group. (2007). Over-representation of Māori in the criminal justice system: an exploratory report. Department of Corrections, Wellington. Retrieved from: www.corrections.govt.nz