STIGMA AND DISCRIMINATION IN SMALL ISLANDS: USING CULTURAL APPROACHES
n Presentation to the Commonwealth Panel
n Ending AIDS stigma: men and women working together
n UN CSW 53 Session March 3, 2009, conference room 2
Here in 2009, under a theme which seeks to share our best practices from the Pacific when overcoming AIDS stigma and discrimination, I just want to pause to reflect on how far we have come in the last decade; especially as we prepare to join the worldwide International women’s day celebrations on March 8. As we explore the CSW theme of shared responsibilities and care-giving in the context of HIV and AIDS, it is now just over 10 years since the first Pacific Islander to publicly declare their HIV status did so, in Tahiti, to a regional convention of journalists which she was herself attending as a graduate of the University of the South Pacific. For Maire Bopp Dupont, the public declaration of her condition marked a historic moment which broke through the walls of silence and denial around HIV and AIDS and continues to reveal the stigma and discrimination holding those walls of silence and shame together.
In the decade since that moment, Maire has gone from Pacific journalist to global advocate. In the same timeframe, the Pacific region has stepped up its response to the epidemic, with a mixed bag of results.
I’m here to share some of what works from what is arguably the most diverse region on the planet, where the gender inequality fuelling the spread of AIDS remains the single largest obstacle to achieving the vision of a stronger future for all Pacific people.
3 people out of every four from a population of 8 million spread across the 24 countries of Oceania come from one country alone: Papua New Guinea. And in this nation, facing challenges to progress on levels that make it the Africa of the Pacific, more than 2,000 new cases of HIV have been reported every year since 2002. [i] If you follow the iceberg theory on statistics, the scenario makes it even more urgent that we get to the actions that deliver lasting results.
I shared Maire’s story with you earlier as it illustrates the thinking behind what is a significant milestone in Pacific research on HIV and AIDS, a report on stigma and discrimination as felt by those at the receiving end. The PIAF study, commenced in 2007, involved 19 HIV positive [ii]Pacific Islanders from 5 countries, some of them advocates who had made their status public, others choosing to keep their status private. 11 women and 8 men from a cake slice of Pacific society opened up their lives and allowed researchers in. It was a rare moment which created a much-needed space for Pacific PLWA to reflect on their experiences.
In their own words, the respondents in the report talk frankly and honestly, in street language, in high language, and in their own language, about the loss of even their most basic human rights. For one, the only meal of a long day looking for work was a handful of dried beans. For another, the comfort of a home and a bed to sleep at night was no longer an option. And even in the village, the isolation cuts deep when everyone finishes bathing as soon as you turn up at the river. The report reveals how opportunities for work, education, access to affordable health and treatment, the right to live with dignity were gradually lost as stigma and discrimination kicked in and added depression, to the threat of violence and abuse faced by the survey group.
But despite turning the myth of the Pacific culture of love, care, and extended families on its head, there were exceptions. One of the most important and poignant outcomes of the study is that Pacific PLWA do not want pity or sympathy. None of the interviewees referred to or thought of themselves as victims. Given the personal tragedies that were shared, their struggles in a hostile and stigmatised environment, their strength in the face of adversity, and their determination to overcome, those initially diagnosed as HIV positive, and now living positively with HIV have, to quote the research team “renewed our faith in the beauty and strength of the human spirit.”[iii]
All the respondents are at different stages of rising above their situations and in doing so have become ordinary people living extraordinary lives. They offer recommendations detailed and broad, aimed at different levels of the Pacific response. What worked for them in the battle against prejudice and allowed them to get on with the business of living? For many, the support and acceptance of their families. For others, a renewed personal journey in relationships, forgiveness, maturity and a strong sense of self belief, faith and prayer. And for all, access not just to treatment and care, but on-going counseling, with help finding jobs from NGO and other support networks in their communities.
The most powerful parts of the report provide hints of the Pacific solution to stigma and discrimination. Brothers and fathers hug their sisters and daughters and assure them of their support. Pastors openly preach messages to their congregations that those with AIDS are Gods children too. Husbands and lovers reconcile and take open communication to a new level, if they remain together. NGOs provide jobs and employment, along with networks to counseling and peer support for PLWA.
It is a new wave of Pacific change, a new change in Pacific culture, which is allowing Pacific responses to stigma and discrimination to find their space. While culture is often seen as an enemy and barrier in itself, and while there are many studies that provide evidence that we still have a long way to go, at this point I invite you to join me in a celebration of cultural identity. No I am not about to break out the coconut shells and drumbeats and hula across the stage. I want to present a few descriptive statements if I may, of the kinds of Pacific culture we need to develop to overcome stigma and discrimination, weaving in some specific examples illustrating the approaches. So what are cultural ways of seeing? Well it depends really on how you see culture. I’m talking less about the historical carvings or artifacts sitting in museums, and more of the way we live for our times, just as our Pacific ancestors lived for theirs. The dynamic view of culture as proposed by Pacific visionary, New Caledonia’s Jean-Marie Tjibaou is what best reflects this interplay between cultural expression and how we relate to it for comfort and identity as we confront the challenges of life:
“Culture is always unfinished”, says Tjibaou, “…our identity lies ahead of us.”
On that note, he invites us to imagine and innovate, to map our own paths using our own understanding of what it is to be Pacific people living with AIDS in our communities, in our families, in our bodies.
In this Pacific context, we are challenged by the report results to foster cultures rich with Pacific energy, cultures which allow the best of our strengths and diversity to take the lead. How do we claim those powerful cultural expressions or solutions as part of a dynamic identity for a changing world? I believe the key lies in using what we have today to imagine what lies ahead of us tomorrow:
So based on the stigma and discrimination study and inspired by Tjibaou, here’s some of what we might imagine lies before us:
Cultures of true and visionary leadership: A leadership of caring, principled and committed leaders at all levels of Pacific society would be more concerned about the plight of the poor, the weak and the marginalized; and legislate accordingly. Church leadership is well on the way with plans by the Pacific council of churches to include human rights training for pastors in their work program. But political leaders also need reminding of the impact of poor decision making on those living with stigma and discrimination. Calling attention to the need for leadership and political commitment to human rights is just one of many whole of life issues promoted by PIAF in a forthcoming radio drama series entitled ‘A walk with Mele.’ The drama play reflects Pacific realities and is set in a region where radio is the most widely spread information medium. It allows the key actors, both of them women, one of whom has AIDS, to share with us their lives and their dramatized stories as Pacific women.
Cultures of gender equality and empowerment: Promoting cultures of understanding around the need for gender equality and its shared benefits involves partnerships for lasting change. Working with men as partners is one step in that journey. In Fiji, Vanuatu and the Solomon Islands a Male Involvement in Reproductive Health program targets men in workplace settings, raising awareness of reproductive health issues. It encourages Pacific men to be more involved with their partners during pregnancy and child rearing. Regional advocacy organization the FWCC is involving men as partners and breaking down the cultural myths at the heart of VAW, allowing men to understand and undermine cultural acceptance of abuse as well as the context within which sexual violence and risk taking occur.
Cultures of celebration and diversity: In the old Pacific, canoes visiting between islands would trade and share songs and dance as part of their ‘discovery’ -- A new trend is emerging which is unique to the Polynesian sub region covering the Cook Islands, Tahiti, Tonga, and Samoa. The phenomenon of widespread acceptance of fafafine, laelae, mahu or effeminate males who often dress as women but are rarely given public acceptance of their gayness and sexuality is now being challenged. In new ways of advocating safe sex and talking about risk, the Cook Islands Te Tiare Association raises funds, acceptance and awareness of MSM, all through a dance troupe which has widespread local support and is about to tour New Zealand and eventually, Tonga.
Cultures of relevance, involvement and partnership: Seeing and appreciating other points of view often involves challenging our own world views. A stepping stones project trialed in village settings in Fiji and the Solomon Islands recognizes the most powerful change is the one that comes from within, and is a communications tool aimed at helping participants claim and redefine their own understanding of gender, violence, sexuality, and HIV/AIDS while gaining a great set of communication and relationship skills. In Papua New Guinea and the Solomon Islands, the advocacy messages made powerful by indigenous language and humour are delivered with edge by community-dramas taken to remote villages, and always involving prior negotiation to win the support of traditional chiefs who are essential to gaining acceptance and an audience.
There are other aspects of culture which resonate, but in closing the single most powerful cultural quality for fighting stigma and discrimination in the Pacific is the one I started with: it is the culture of speaking out, and breaking the silence. It is the willingness of all of us, whether we have AIDS or not, to step up and shine the light on the white elephants dressed up as cultural taboos, and to denounce discrimination for what it is. In standing up to advocate and educate the rest of us, those with AIDS in the Pacific are really pointing us back to the Pacific Way of love, compassion, dignity and respect. Not just because our governments have signed on to a dotted line that says these things are a human right – but simply because we are worth it.
[ii] The research participants included 19 individuals living with HIV from five Pacific Island Fiji (15) with one each from Kiribati , Samoa , Solomon Islands , and Vanuatu
