white man's diseaseThe evidence from the United States, the United Kingdom and Australia points to the conflation of AIDS and homosexuality as integral and lending considerable impetus to this discursive construction of 'white man's disease'. That AIDS should have such an effect is hardly surprising in the context of Treichler's powerful discussion of the reality of AIDS as an 'epidemic of signification', where the 'Other' is always present in varying world contexts (Treichler 1988). Watney writes of AIDS as a crisis of representation where the early medical discourse was informed by deep cultural ideas about the deadly character of male homosexuality (Watney 1987).
|Bruce: The biggest thing to ignorance, to racism is fear. I fear you because you're gay or I fear you because you've got AIDS, I fear you because you're black.|
|A review of HIV/AIDS media strategies for Aboriginal and Torres Strait Islander people found a Queensland video 1988 talks of:|
|condoms as a white man's way to stop male sex fluid going into a woman. The video also features the anal rape of a warrior by the mythological Purri Purri man and Hill observes that this 'treats the homosexual as being exceptional, almost supernatural, and not part of the ongoing cycle of transmission' (Brady 1993 : 19).|
Contact with the epidemicMark recalls his first contact with the epidemic:
|Oh yeah that was something on the news
. . . GRID . . . that first case being diagnosed in Australia had a profound
effect on me 'cause I thought all right it's in Australia . . . it was
like a very big worry . . . people meeting and committees being set up
but everyone still living very unsafely or practising unsafe sex.
James: I've always heard about it . . . but it wasn't until a very good friend of mine . . . he died and then that was the first close person to me who died and basically all my life I've never had someone close to me who has died. I'm an urban Aboriginal person and I know that HIV and AIDS is a really big problem in our community.
|Barry comments on other HIV-antibody-positive Aboriginal men:|
|I don't have much in common with him except we're Aboriginal, gay and HIV and that's about it. Lots of young Aboriginal guys have become positive in the last year that I know of. And a lot of them don't handle it too well because they stress out. They say that Aboriginal people have their immune systems only a third the strength of non-Aboriginal people . . . which isn't true because it's usually to do with your mind.|
|Colin has a brother and a close friend who are positive.|
|He [the friend] was too good to go so soon. It was a shame that when he left there wasn't enough people to help him but he liked it like that. Some people just couldn't accept it . . . some people just rum a blind eye. He never told us. He only told a few people . . . but I knew and I knew he knew I knew . . . 'well honey, you know, if you go out and flick around, then this is what you get' [he said]. I think when you start being real . . . then that opens the door and I feel a lot of people don't want to open that door.|
|Gary states that he knows: 'lots around Sydney . . . who have AIDS'. He talks fatalistically about this, which may well reveal as much about his own concerns as about his perceptions of others:|
|I think it's they're happy that they have it because they are meeting an early death and they're getting out of this world very quickly. I think it's going to be the Aboriginal people's number-one killer in . . . ten years . . . it's coming closer but while it's not happening to them or any of their family they're not worried, not concerned.|
|Daryl displays a curious lack of engagement with the epidemic. This may reflect the fact that as a younger man he has grown up with knowledge of HIV/AIDS. A similar dynamic has been observed in other interviews with younger men in the Homosexually Active Men Project of the National Centre in HIV Social Research.|
|I've known a lot of people with AIDS but no I haven't cared for anyone. Sex work I would imagine would have meant a fairly major engagement.|
|Michael has been concerned with the sexual health of Aboriginal homosexually active men for many years, from early experiences at the Sydney clinic with testing for gonorrhoea to his promotion of a care-and-support house for positive Aboriginal men:|
|And my thing is all to support people who are HIV. Set up the house where we can cook, they can come and eat good food. That's my thing of the support group. I said all HIV men can die alone. They can die alone. And that's really hard and terrible. I say it. And that hurts me and tears me inside.|
|John talks about his experience of peer support in the gay community:|
|he just wanted to know how I look after myself and about the services available from ACON, BGF [gay community support organisation]. You see they're all from country towns and that, they don't have that information so they come and ask all the time. I can't use BGF any more because I've ripped them off [laughing]. R used to work for the AMS [Aboriginal Medical Service] but they wouldn't support him enough in what he wanted to do so he left. I mean I wouldn't want to work for an Aboriginal organisation because there's too much nepotism in there anyway and they don't employ enough gay people for Aboriginal health . . . I mean in Redfern it's a lot of Aboriginal people can't accept homosexuality .. . I sort of throw it in their face ... they know I'm Aboriginal, they know I'm gay . . . probably talk behind my back.|
AIDS and the Aboriginal communityThe First National Aboriginal HIV/AIDS Conference in Alice Springs in 1992 received considerable media attention after the pronouncement of Professor Fred Hollows (ophthalmic surgeon and Aboriginal health advocate) that HIV-positive Aboriginal men should not be allowed to return to their communities. This overshadowed the recommendations of the conference, which included the recommendation for community support and care for HIV-positive people (Behrendt 1992: 15). Aboriginal artist Bronwyn Bancroft talked of the 'double barrel' pointed at Aboriginal men who were both gay and positive (Bancroft 1994). Another commentator said:
|Aboriginal society was based on principles
of reciprocity . . . Aboriginal homosexuals feel excluded from their society.
. . . Aboriginal people must not feel isolated like this because of their
sexual preference . . . Expelling Aboriginal people from the community,
as Professor Hollows suggests, is callous and contradictory to traditional
notions of caring for our own people . . . it is the duty of each community
to care for people with AIDS and not leave them to die alone away from
their families (Behrendt 1992: 14-15).
Philip: I still live in Aboriginal communities. Like in the old days they took care of their own, regardless of whether they were gay or not.
|Despite early fears of AIDS entering the
Aboriginal community, it appeared that this 'hasn't eventuated, [and] we
are now in danger of growing complacent' (Fagan 1992: 16). Recently both
Aboriginal and epidemiological writers have strongly reiterated this concern
(Marshall 1994: 13; Bradford, Stephenson and Come 1994: 7). Brady suggests
that because of the danger of 'AIDS fatigue . . . integrated programs are
of the essence. All links to AIDS, STDS and alcohol should be stressed'
(Brady 1993 : 45).
Stanley R. Nangala, chair of the ATSIC Communicable Diseases Advisory Panel, says:
|The Aboriginal community still questions
whether we have got it right. There is a need for additional development
of education and prevention programs that are targeted to meet the needs
of specific Aboriginal groups within the community, e.g. the youth, young
homosexual men, bisexuals, IV drug users etc.
It is a waste of valuable resources if Aboriginal people were funded to run workshops on HIV/AIDS all the time. Education in this field has to be addressed as a holistic approach.
My message to you from many Aboriginal communities is yes, we have got it right, we know what needs to be done, and we know how to do it. But it is obvious that those in power need to listen to us and get it right, we are sick of confused cross messages (Nangala 1992: 4-5).
|One Northern Territory poster gave no advice but just a message of fear alongside the promotion of myth:|
|Long ago no sickness
until white people came
now some Aboriginal people got AIDS and other sicknesses
AIDS is a killer
there is no cure (cited in Brady 1993: 40).
Recent epidemiological literatureIn Australia Aboriginal people currently have the worst health. There is great uncertainty about the prevalence of HIV infection and the mortality rate from AIDS in Aboriginal communities (Douglas 1995) and there have been few articles on this topic. HIV notifications for Aboriginal clients make up 1-2 per cent of the total HIV infections in each state, consistent with Aboriginal people's overall proportion of the population. It has been suggested that, in fact, HIV is known to be well established in the Aboriginal population given the risk factors outlined and that it poses a serious health threat to Aboriginal communities (Bowden, Sheppard and Cume 1994). In urban communities there is known injecting drug use and homosexual activity. Excessive alcohol and drug use also renders parts of the Aboriginal community at risk of contacting HIV and hastening the progression of the infection towards AIDS. Recent commentators:
|There is a perception in the community
that HIV/AIDS is not a big problem, and there has been some difficulty
in maintaining community interest.
There are a number of valuable lessons that have been gained from the experience of HIV/AIDS in the non-Aboriginal community, which should be the fulcrum to avert the same tragedy in the Aboriginal community. The Aboriginal community represents a spectrum of features which include risk. The response of the health care community needs to address these features and respond to the epidemic effectively and in a manner which embraces the dignity of the people it is intended to help (Douglas 1995).
|Kum Sing cites points of departure in terms of difference between the gay community and Aboriginal community in response to the HIV/AIDS epidemic:|
|socioeconomic status, traditional and family commitments, health status, educational status, self-esteem, psychological oppression, spiritual oppression, sexual oppression and abuse, violence, alcohol and drug use (history) (Kum Sing 1995).|
|There remain very few published personal accounts of the experience of HIV/AIDS by Aboriginal people. Mark Cook, an HIV/AIDS educator who lost a brother to the disease, writes that HIV is still very much caught up in 'white man's disease':|
|Everyone is so ashamed to talk about it, that these people who still grieve can't because it's taboo . . . [this] will be a taboo subject for a long time unless the stigma is overcome. That is when we as Aboriginal people will show all the signs of a caring and sharing community (Cook 1992: 14).|
|Research in the United States is now beginning to look at depressive tendencies among homosexually active African-American men and women. Preliminary findings show that as a population they are more distressed than similar studies of white men, significantly more so if they are HIV-infected (Cochran and Mays 1994: 524-9). Positive Aboriginal gay activist Rodney Junga has been a lone voice in expressing his difficulties and grief:|
|People in my position feel isolated from our communities. We're not out there mixing with our own people. We don't have the energy for that. I miss that. I miss my tribe (cited in Arris 1993: 13).|
|Aside from evoking 'distress', Junga provides one of the few references to the possibility of accounting for the reality that there are many Aboriginal gay men who have died of AIDS. Junga asserts that he has known 15 Aboriginal people to have died in the last few Years - a poignant reminder of the paradox that the consequence of Australian epidemiological statistics not being broken down into ethnic groupings is invisibility (Sergent 1992: 17). Junga also addresses tile concepts of fatalism and morbidity in terms of indigenous Australia and speaks of the possibility of 'reconciliation' between Aboriginal and non-Aboriginal people in terms of 'shared learning':|
|We have had to deal with multiple deaths for two hundred years; now non- Aboriginal communities have to deal with that too. Hopefully, Aboriginal people will have access to what we're learning about that. That [knowledge] will help us survive (Arris 1993: 17).|
|Kathy Kum Sing, a well-known Aboriginal health and HIV/AIDS activist and policy adviser, has stated that there is already a history of indigenous people and HIV/AIDS which has gone unrecognised and that this issue must be addressed:|
|If we want to know where we are going to then we have to know where we are coming from, i.e. acknowledgment of subcultures within our communities, the work of people at the local level who are affected and infected in our communities by HIV/AIDS, the diversity of Aboriginal peoples; adaptation of society, adaptation of culture to live in today's society, institutionalisation, incarceration, lack of resources and opportunity (Kum Sing 1995).|
|A further point gleaned from the overseas
research which has some resonance in the Australian context is that in
the United States sexual transmission in the black population is often
elided beneath a focus on injecting drug use. Kum Sing (1993: 3) stated
that 'drugs and HIV/AIDS are the genocide of this century'. The problem
of heavy alcohol and drug use appears in every reference to Aboriginal
communities. This reality should not be discounted in any search for an
appropriate strategy to combat the spread of AIDS. However, attention to
injecting drug use at the expense of other forms of HIV transmission is
questionable for Aboriginal Australia and raises questions again about
'silence' and homophobia.
Malcolm Cole talked to 45 Aboriginal homosexually active men in Sydney and wrote a report (unpublished) for the Redfern Aboriginal Medical Service in 1991. Cole estimated that there were about 200 'Aboriginal gay' men in Sydney. A major recommendation in this report was the need for an Aboriginal gay/HIV support group. As the epidemic has grown the need for a number of community-based organisations has emerged to provide space for people whose dual or multiple affiliations could cut them off from single community organisations (Altman 1994: 8). Despite the perceived need for an Aboriginal support group, the failure to sustain one with a comprehensive agenda, under the auspices of either Aboriginal or gay community organisations, in Sydney or anywhere else in Australia, has been an ongoing and angst-ridden concern of all the Aboriginal gay men I have spoken to in this study.
Peter and Martin commented that they felt that the Aboriginal community was unprepared to deal with HIV/AIDS as a single-focus issue and because of this not much work was being done. Their view was that it was only Aboriginal gay and lesbian activists who would put it on the agenda in an effective way and they were concerned with the history of this leading to ostracism and burn-out-
|Martin: Will they only start screaming
when a hetero becomes positive? Peter: It's a cultural thing for
people to come into the city, to visit relations, to have a good time.
And they sleep with people.
We need to go back to basics. At the moment we're fifteen to twenty steps behind everyone in the education process.
|John spoke about his views on Aboriginal community control:|
|It's only there in theory, the cars are
there, the funding's there but when it actually came down to actually picking
up the bat and hitting the ball it was really frustrating. It was blame
the victim mentality . . . basically I think that if any solutions are
going to happen for the Koori community it's got to stop being politically
correct all the time.
To get things up and running like support groups you need people that are empowered . . . we take a step away from that direction we're actually going to do more damage than good. HIV and AIDS at the moment in the Aboriginal community, it's there . . . I think people are waiting till the tidal wave comes before they do anything. No one wants to be actually made accountable but who is going to be responsible?
|One of the key issues raised by the interviewees has been the need for an Aboriginal gay and HIV support group in Sydney. One of the difficult issues here has been the question of how to get services and support that are appropriate and from which community. The nexus of much debate has been whether this support should come from the Aboriginal or gay community. The research to date would suggest that there is a complex and perhaps impossible choice to be made between solidarity with one's own racial group and solidarity with those who share one's sexual preference. A policy implication that needs to addressed in the context of HIV prevention and also care and support is that collaboration between these two communities needs to be promoted as a matter of urgency. The complexities and ambiguities revealed in the dilemma of feeling compelled to make the choice of where one belongs and in the attempt to facilitate a coalitionist strategy to address these issues is compelling in the research.|
|Philip: If you went to their place for help they should train somebody as a carer. There are a lot of Aboriginal people who wouldn't want an Anglo person to look after them or talk to them because of that cultural thing. It's getting to a point where I feel a lot of people don't want that. Why don't they try to train Aboriginal people when Aboriginal people know these things? Getting appropriate Aboriginal people in there, trained people.|
|Michael McCloud spoke about his work as an Aboriginal community sexual health educator:|
|I'll get a phone call and it's usually
to meet them. We talk about these issues and if I don't cover that area
I'm a great referral service. I think it's important to understand that
the Aboriginal communities down here are not naive, they are aware of these
issues, if they're not in their own denial . . . they're not even about
to acknowledge that . . . so when it comes to their youth and I think that's
it . . . they believe their youth acquired this information in these workshops,
so mentioning homosexuality well I suppose there's so many factions . .
. there's a certain way to do it but in my entire time . . . I have not
had a problem talking about these issues or any issue actually.
Mark: You can't do HIV/AIDS without education drugs and alcohol . . . substance abuse, you can't look at it without looking at child sexual assault or nutrition or whatever, it's the whole mental health, the whole issue's there.
Future directionsRecent researchers have asked:
|What is the status of 'Western' sexual identities in non-western cultures? What are the circumstances and needs of men who belong to one or more cultures and who often find themselves in-between? How do communities and individuals deal with modem day 'homophobia'? How can modem health bureaucracies respond to the needs of special groups when important subgroups have been unrecognised for so long and who often carry the triple disadvantage of being indigenous, at risk of HIV and gay? (Plummer and Minichiello 1995: 4).|
|Kum Sing comments on her analysis of a changing society in the context of Aboriginality and homosexuality:|
|Issues of the stolen generation, family
situation, Aboriginal law and belief all this is the base of any program.
Gays can provide another side and Aboriginal-run programs can help bring
them back to the community. Gays are a marginalised family in some ways
and come with a strong identity view. They can learn the Aboriginal way
and protocol. It needs to be a two-way process, but the Aboriginal way
This subgroup must have ownership in the Aboriginal community. They may be a new tribe but there are commonalities too. Some gays are empowered and some aren't. Oppression and things like sexual abuse and alcohol etc. are all part of it (Kum Sing 1995).
|Much of the discussion of policy and future direction that this project engaged involved questions about appropriate sites of HIV/AIDS prevention, education and care and support. No easy directions are forthcoming at this stage and it would be, at best, naive to suggest that complex issues can in fact be simplistically addressed. But the issues raised require urgent response. Some commentators state that this response is, in fact, needed in the wider context.|
|Janya McCalman: From what I've heard there's a lot of people in communities that aren't actually receiving the services . . . I think a lot of that is because there hasn't really been a direction that's clearly stated . . . there's a lot of needs that haven't been met, like training workers and maybe information exchange between workers.|
|Vlad Williams raises the concern that HIV/AIDS has not received the status it requires in the Aboriginal community:|
|You need to have some credible backing so people can trust you, particularly in the Aboriginal communities.|
|Kum Sing comments on both the macro and micro levels of the ensuing debate:|
|So is HIV prevention and cultural diversity
something we can marry together and are non-Aboriginal people going to
continue to hold positions of power at base-line decision making? We need
community ownership over the virus. White people come in, do work and take
it with them.
There needs to be collaboration with HIV/AIDS services, etc., with the non- tokenistic involvement of NACCHA [National Aboriginal Consultative Committee on HIV/AIDS]. Then I feel we have a real attempt at cultural based service delivery and sexual based service delivery that can bring about change without losing identity in our community. The empowerment process must begin - it's almost like a mini sexual revolution of indigenous sexual empowerment (Kum Sing 1995).
|The nexus of much debate has been whether HIV/AIDS services should be under the auspices of mainstream or Aboriginal organisations. V/hat became evident in this study was an uneasy relationship between a policy of Aboriginal self-determination and the incorporation of homosexuality within its borders. One issue stemming from this was human rights. A recent editorial in Venereology was a forerunner in terms of Aboriginal gay comment in this type of media. The complexity of issues from both sides of the fence are raised:|
|It has been long known that ATSI [Aboriginal
and Tomes Strait Islander] Gay and Transgender people were part of Aboriginal
communities and had plenty to say. Our role as community activists has
been long and substantial. . . . never before have we stood up in a public
arena as one strong body . . . and grappled with our fight against HIV/AIDS;
our struggle for identity; the constant battle we face against alcohol
and drug use; and our concerns about sexual and mental health. . . .
Previously, attempts to place our issues on the ATSI community agenda have met with obstruction, denial and non-acceptance . . .
Our health and that of our ATSI community depends on these initiatives, Those who really believe in social justice must support us (Forrest 1995: 13-14).
|Kum Sing also pluralises the issues and contends that a response must be forthcoming from Aboriginal gay and lesbian people as well:|
|There must always be true representation from the community with affiliation and association, so that protocols of Aboriginal traditions and values are maintained at every level with the highest degree of integrity. . . . this is my number one priority . . . to see that the survival and adapting continuity of our culture continues. This is the Aboriginal way, it needs to continue to happen but to be resourced and empowered to do it with equal standing with decision makers and funding bodies. The need to be a comprehensive response ... the ongoing difficulties posed by other STDS; the undermining effect of a myriad of sexual health problems; and a community agenda for social justice means that it is vital for Aboriginal and Torres Strait Islander gay and transgender people to 'come out'. Aboriginal men are the best to work on an Aboriginal gay project but no one is free to do that, they're either not available or not trained (Kum Sing 1995).|
|Kum Sing also warns about tokenistic efforts to educate mainstream organisations on Aboriginal 'issues':|
|Yes we may never be able to stamp out racism but let us not be fooled that workshops on cultural sensitivity are the answers (Kum Sing 1995).|
|Although there have been HIV educators within Aboriginal organisations for several years, there has also been a history of burnt-out due to an over-full agenda. As Michael McCloud says:|
|Everyone's been waiting for the last ten
years for some national body to be established for information . . . to
start coming back to a localised level so that the communities can use
Aboriginal organisations are not approachable. It's already been proven that the mainstream may have a hope of helping other Aboriginal gay men who are HIV positive, be able to help them to put up the support groups . . . I think it's time that ACON [the AIDS Council of NSW or the AIDS Bureau [of the NSW Health Department] got off their buffs and took some responsibility in the Aboriginal areas . . . the argument I've heard that it isn't politically correct to go in. I think shame upon them if they think about it as that . . . if politics is going to make them back away from an issue . . . it's terrible to consider that . . . They can actually make some kind of impact by employing Aboriginal people who can do the job.
|Kum Sing states that the best training programs:|
|have been initiated and developed by indigenous
and Aboriginal people themselves. They were a start in the ownership and
acknowledgment of HIV/AIDS in the Aboriginal community. A large number
of these programs were initiated under crisis conditions, underresourced
and run by organisations and communities that already live in appalling
conditions and health status.
So I believe that successful training programs must be directed both from the community affected and the local community-controlled health service in collaboration with state, regional and local health bodies across the country. This collaboration is needed from a technical, and practical level (Kum Sing 1995).
|The above is far from a simplistic response
to education and support needs, referring to both the efficacy of mainstream
service provision and the need for cultural appropriateness. Respondents
to this study raised the issue that mainstream organisations were unsure
of how to negotiate between their sense of responsibility to the Aboriginal
gay subgroup and adhering to policy directives on Aboriginal self-determination.
The question of appropriate dialogue is fundamental here.
ConclusionThis study has endeavoured to map out some of the issues that have emerged from a complex field of research. It is suggested that some of the future direction belongs in a discursive analysis of this complexity and ambiguity and that discourse, in this analysis, is defined as both representation and practice. But more than this is needed to confront the urgent reality that, at present, it is Aboriginal gay and homosexually active men that are becoming infected with and dying of HIV/AIDS. It is hard to imagine that anything other than bold and decisive dialogue between mainstream HIV/AIDS services, Aboriginal organisations and the subgroup in question can provide the future directions so urgently required. The 'problem' must be owned. The last word is left to Kathy Kum Sing:
|The disease HIV/AIDS gives us only one opportunity and that is to mobilise and survive (Kum Sing 1995).|
|© HIV, AIDS
and Society Publications 1996
This report may not be copied without the express permission of the copyright holder.
ISBN 085837 832 9