Has social justice lost favour within HIV/AIDS advocacy, or are AIDS organisations just repackaging the same old social justice demands using different rhetoric? MARK CATTELL, JOHN GODWIN and TIM LEACH report on the social justice satellite session at the NAPWA conference.
Social justice was a recurring theme at the NAPWA conference in Cairns and a focus of the keynote address by Marcus Einfeld. It was also the topic of the conference’s final workshop, attended by 45 people from around Australia and PNG.
The context: Australia 2003, where are we heading?
Justice Einfeld’s plenary speech at the NAPWA conference reminded us of the ongoing social injustice in Australian society. Pointing to Australia’s refugee policy and the expenditure on anti-terror measures rather than health and welfare, he also warned of the impact economic policy can have in contributing to social injustice, and called for rational economics rather than economic rationalism.
There were many other examples of injustice in Justice Einfeld’s speech: poverty; the promotion of private health care at the expense of public health; the steadily declining rewards for health practitioners and the impact of this on the capacity of practitioners to meet the health care needs of the population; racism and the lack of recognition of cultural diversity; the denial of rights to gay men and lesbians; the struggles of people with disabilities, inequality of women and appalling treatment of Indigenous Australians.
Justice Einfeld issued us with a challenge: to focus on the social justice issues facing people living with HIV, to keep our guard up and to be vigilant in relation to the rights of our communities.
The NAPWA conference was held the same week President Bush visited Australia, at a time when the US is seeking changes to Australia’s Pharmaceutical Benefits Scheme as part of a free trade agreement. This threatens the affordability of medicines for all Australians, and would have a particularly unjust impact on those with ongoing complex health needs such as people living with HIV.
We were also reminded of the massive reduction in funding of state and federal human rights agencies over the last five years, by governments from both sides of politics. The precarious nature of our human rights agencies, it was suggested, does not bode well for promotion of rights and social justice in contemporary times.
What is social justice?
There is no single correct definition of social justice, but we need to reflect on what it means to us before using the term in our advocacy or strategising.
Social justice is often equated with fairness, and fairness is usually thought of in terms of two related concepts: fairness in distribution of resources (a fair sharing of benefits), and fairness in the opportunities afforded to us to realise our full potential (a fair chance in life).
A brainstorming session by workshop participants on interpretations of social justice resulted in a list of concepts and aspirations including equality for all, respect for diversity, protection of inalienable human rights, fair and equitable treatment, an environment within which people living with HIV can reach their full potential, confronting stigma and poverty and championing Indigenous rights, among others.
What are the key issues?
We asked workshop participants to identify the key HIV issues affecting our communities, and the resulting list was extensive. Participants identified the need for the AIDS sector to show leadership in relation to social justice and to work towards world-class social policies. This reflected Justice Einfeld’s call for Australia to judge its social justice performance not by reference to those nations with a poorer record, but by what we are capable of achieving.
There are real and increasing threats to our national advocacy organisations (NAPWA and AFAO). The impact of the foreshadowed withdrawal of these organisations’ charity tax status will be significant — without charity status, their capacity to attract staff and keep organisational costs low will be diminished. NAPWA and AFAO need to be able to speak out without fear of government reprisal.
Preserving the current level of health services by maintaining support for Medicare, bulk billing and the Pharmaceutical Benefits Scheme was identified as a priority social justice issue. Many participants felt that the principle of universal health care was under threat.
A health care system should be judged not only by its capacity to meet the routine needs of all but also by its ability to respond to the specific needs of people with complex needs, such as many people living with HIV/AIDS. Choice is a key component of proper health care, and participants identified the need for these choices to include alternative therapies.
The universality of health care is not the only health principle under threat. The battle to promote consumer input into health care provision is not yet over and participants pointed to a number of recent developments impacting on the right of HIV-positive people to be involved in their health care.
Participants agreed that Centrelink services need improvement, welfare reform must be appropriate and we need to fight for income support that enables people to live well. Access to safe, supportive housing remains a central issue: people with HIV/AIDS need to be able to live affordably in places close to their health services and away from homophobic or AIDS-phobic neighbours.
Participation in community life was raised as an issue. Continued stigma and discrimination indicate that continued vigilance is required. We need to fight the tendency to ‘label’ — being labelled as ‘lesser’, ‘deviant’, or ‘sick’ by our critics and by ourselves can undermine efforts to promote acceptance and equality.
Not surprisingly, access to insurance and superannuation remains a critical issue. Many participants shared examples of their own experiences of discrimination in these areas — in death and disability cover, mortgage insurance and travel insurance.
This snapshot from the workshop suggests that experiences of discrimination are common. Discrimination occurred in many other settings as well, including in the area of work, in travel restrictions for people living with HIV/AIDS and, in its most dangerous form, in violation of personal safety and violence. In particular, delegates from PNG highlighted the impact of violence as a major obstacle to social justice in their country.
Participants felt that protection from discrimination calls for a holistic response including legislation, proper access to quality legal representation and funding of human rights agencies.
The inseparability of the rights of people living with HIV/AIDS from the broader recognition of the rights of gay men and lesbians remains an enduring factor. In this context, the refusal to acknowledge same sex relationships, including in the area of superannuation, is a continuing problem.
There was some discussion within the workshop of the need for a renewed sense of community spirit around social justice issues and a more collective caring response to the needs of people with HIV/AIDS. Improvements in treatments and changing perception of HIV/AIDS from terminal disease to chronic manageable illness mask the continued desperation for some for whom no treatment options remain. The conference began with a listing of names of NAPWA activists who had died in the past year, and participants urged use of this continuing reality in support of social justice campaigning. In this context, the lack of access to treatments for PNG participants was a reminder of our regional responsibilities.
Having identified current social justice issues, the workshop revisited NAPWA’s 1993 Declaration of the Rights of People Living with HIV and AIDS. The enduring relevance of this decade-old document was striking, although a straw poll indicated very few people refer to it in advocacy. But the declaration has stood the test of time, and could still be used as a basis for thinking about advocacy strategies by NAPWA and its members.
Promoting social justice — new strategies for old demands
Arguing social justice in the context of HIV/AIDS is important, but it can be difficult to obtain media coverage for long wish lists, or for declarations that are ten years old. Advocacy organisations must find ways of repackaging social justice demands in ways that are easily presented and digestible. One possible grouping of issues was developed within the workshop as follows:
- We need education for HIV-positive people and for the broader community about the rights of people with HIV/AIDS, and all HIV-related education must acknowledge diversity and be accessible. There are good examples of past rights-based education, but there have been no such initiatives in recent times.
- Positive people must be supported to live as full participants in community life. There needs to be attention paid to the housing needs of positive people, to income support, to access to technology and community services.
- The ability to criticise government is a key characteristic of a healthy society, and our representative organisations are a critical part of this.
- Health and health care is, of course, central to social justice for people with HIV/AIDS. Access to treatments and care, securing current levels of services, continued consumer participation and equitable access to medical assistance are critical.
- Stigma and discrimination continue to be significant problems. Labelling by society and ourselves, employment discrimination and other barriers to full participation in society must all be addressed. Gay and lesbian law reform must remain on the agenda and the discriminatory practices of the life insurance and superannuation industries must end.
- Rights without enforcement are close to meaningless, so government should be asked to explain their positions on the independence of human rights agencies. Continued commitment to funding legal aid services is essential for true access to justice.
- Federal parties should be asked to outline positions on the relevance of HIV/AIDS to visas and immigration .
- The diversity of the HIV community requires acknowledgement and appropriate response. This is an issue both for service providers — services must be accessible for all people with HIV — and for HIV advocacy in demanding collaboration with all groups affected. Social justice issues unite HIV groups with other advocacy movements, notably disability groups and Indigenous organisations, and links with the Asia Pacific are also important.
What do we need to do?
While there are difficulties in pushing a social justice agenda at this time, the workshop had several suggestions for strategic responses:
- an Agenda for Action , informed by the NAPWA Declaration. A consensus statement on what our social justice priorities are in the lead up to the 2004 federal election;
- a scoresheet of political parties’ policies relating to our issues in a pre-election edition of Positive Living ;
- a review of legislation at state and federal levels to identify laws that still discriminate against people with HIV and affected communities;
- a review of the recommendations of the NSW Anti-Discrimination Board inquiry into HIV discrimination — how far have we come in over ten years?
- a new Bill of Rights for People Living With HIV/AIDS , based on the current NAPWA Declaration, to help frame advocacy and ensure positive people continue to speak with one voice. This process could be undertaken by NAPWA and would involve the engagement of other PLWHA organisations around the country;
- a process for deciding which issues should be pursued by us alone, and which issues should be pursued through broader coalitions.
_*Mark Catell* is NAPWA’s Legal convenor; John Godwin is a policy officer for AFAO and legal editor of HIV Australia; Tim Leach is a former deputy director of AFAO. The 1993 Declaration is online at www.napwa.org.au._
