For all Australians?
In a time when many are hailing advances in HIV/AIDS treatments, and lauding Australia's response to HIV as exemplary, just how proud of our record should we be? Gay, Indigenous and HIV positive, Rodney Junga-Williams tells a different story. For Aboriginal Australians, he writes, its a question of: What access? Whose equality?
MY NAME is Rodney Junga. I come from the Narrunga and Kaurna nations of the York Peninsula and Adelaide plains of South Australia. I am one of two Indigenous spokespeople on the National Association of People Living with HIV/AIDS (NAPWA) Executive Committee.
I have been an activist in one form or another for some time, involved with HIV/AIDS for a decade. My involvement has [ranged] from peer support to the establishment of needle exchange programs: in particular, advocacy and lobbying for the further inclusion of Indigenous peoples and our issues. In general, Australia is and has been at the forefront in its response to the HIV/AIDS pandemic. If you are an educated or articulate person, normally white, male, gay and or middle-class, vital life-saving and enhancing [HIV] information and treatments are accessible and affordable. Access and equity continue to be high on agendas for those of us who do not fit in the aforementioned groups. This is certainly the case if you are an Indigenous Australian - although much has been and continues to be done by a small group of dedicated peoples.
THE SOCIOPOLITICAL LANDSCAPE
It is hard to talk about AIDS and sexual health without giving an overview of the social and political climate we as Indigenous peoples live in daily. I am one of the first generations born in the city. My mother was one of three generations born on what is commonly called a mission or reservation. Missionaries and/or government officials ran these places. To leave, you had to get permission from the manager and be labelled an 'honorary white'. This system stayed like this until 1967, when the government held a national referendum and white Australians voted to give us the privilege of becoming Australian citizens. I was five years old at the time. This referendum was supposed to be the first step in empowering us to social, economical and cultural equality. Thirty-one years later, most of us are still struggling for these, our basic human rights.
Prior to colonisation there were approximately four million Aboriginal people, possibly more. Now there remain around 380,000 - two percent of the national population. We spoke over 500 different languages and lived in perfect harmony with our surroundings. But then as now the introduction of many diseases took its toll. There is now in Australia a huge influx of immigrants. Vietnamese people alone make over four percent of the national population. We as the Indigenous peoples are still at the bottom of the so-called socio-economic ladder.
I was the first Aboriginal to come out publicly as HIV positive, almost ten years ago. My family has a high profile nationally due to their political work within our communities and organisations. So it is safe to say my choice to come out caused a bit of controversy. For some time I remained the only out HIV positive Aboriginal on the AIDS scene, and for me it seemed an eternity.
ABORIGINE MUST BE FREE
Aborigine Must Be Free, [publishedl in 199z, was the first HIV/AIDS information and educational booklet of its kind in South Australia - both culturally appropriate and sensitive. It was soon distributed nationally and eventually had three editions published. The process of putting it all together came from Aboriginal people both infected and affected, young and old, straight and gay. Supportive non-Aboriginals, AIDS organisations and agencies worked with Aboriginal NGOs [non-government organisations]; HIV/AIDS was finally on the Aboriginal health and social agenda. Our issues as Aboriginal PLWHA were finally being put on the agendas of relevant agencies, organisations and groups. For the first time I didn't feel alone as more and more people were coming out. We also had a unique team of dedicated people working together, with one common goal: to not let our own people continue to live and die in isolation and shame. Most of us that have survived from the team are still functioning in some way or another within the AIDS world. These people were part of my immediate social circle. Many of us had been friends for many years but together now faced new challenges -working together to empower our communities to face yet another disease, perceived by many within our communities to be yet another Whiteman's disease. The challenge of bringing so many different peoples together, to work effectively, sensitively and to hopefully learn from one another, had been met. This became the start of a dynamic era.
Since the publication of the booklet we have had many successes. We have had many advances in each State and Territory, but the most beneficial responses have come from our national forums, committees and working parties. Australia is so large and we are few. Coming together on a national level makes decision-making and networking easier. This also has not-so positive issues, like funding for us to meet, and the ever-increasing concern of just how do you get things happening at a local level, where usually you are under-resourced and have little support.
As was the case in many communities around the globe, the initial response to the pandemic came from our gay, lesbian and transgender peoples. This response also changed the way gay, lesbian and transgender people were treated within our communities - the result being a new found respect. Often, PLWHA were treated as lepers or untouchables, largely due to the early scare campaigns and ingrained prejudices which exist in many AIDS-illiterate communities.
In the history of international AIDS conferences only at three have there been Indigenous Australian representation. In Amsterdam an Aboriginal woman affected by HIV presented a paper. Her HIV positive then-partner was present. In Berlin  and Vancouver , I was the only Aboriginal person present, both as a keynote speaker and participant. Pretty appalling when there have been at least eighty-odd white Australians present at each conference. Few of whom, I must add, were PLWHA. The search for funding to attend these conferences is vast, with few organisations both Aboriginal and non-Aboriginal making funding available and when or if they do it remains tokenistic. There seems to be a general reluctance for us to attend. Even the conferences hosted by GNP and APN+ [Asia-Pacific Network of Positive People] have not supported or promoted the continual inclusion or input of Indigenous Australians. Within Australia, if it were not for both AFAO and NAPWA, who have been and are continually supportive, I fear the inclusion of Indigenous peoples and our issues in the AIDS world would be scarce and largely devalued.
In the past, non-Aboriginal Australians have had little or no understanding of our protocol, etiquette or cultural diversity. So our issues have been put in the "too hard basket". Although many are supportive of our input and issues, due to cultural ignorance, people are scared they'll say or do the wrong thing. Rather than offend us, often the choice is made to do or say nothing. For example, Aboriginal people prefer to be invited to go anywhere outside our language area, due to our varying cultural beliefs, protocol and etiquette. You can get not only yourself but also your family and community into major trouble if you misbehave, or disrespect certain places or people [such as] elders, or sacred sites/places. Slowly, individuals and groups are becoming aware of our protocol, but there still remains much work to be done.
In regards to health, housing, education and the many social issues affecting us, we have a holistic attitude and approach. Culturally, men's business is men's and women's is women's and very rarely do they mix. This has been an oftendifficult issue, especially in regards to the often complex and sensitive issues within sexual health education.
Our life expectancy on average is ten years less than other Australians and in many communities, our people are dying of diseases wiped out in less developed countries: glaucoma, TB, measles, leprosy, smallpox. Diabetes, heart disease and hepatitis B are common. Hep C is rampant amongst [inject- ing drug users].
We make up the major portion of jail populations, and often for petty crimes, with a high proportion of unexplained deaths whilst in police custody. Millions of dollars have been spent on Royal Commissions, supposedly to find answers - but the majority of money is being spent on building 'new and improved' jails. Over 75 percent of Aborigines are unemployed or live below the poverty line, often institutionalised and welfare-dependent. Many of our communities don't have running water, appropriate sewerage or sanitation. We have the highest incidence of youth suicide in the world. Seventy-three percent [of our people] have at one time contemplated suicide, with 37 percent successful. There is a high incidence of teenage pregnancy and sexually transmitted diseases, proving there is not a culture of safe sex amongst sexually active youth and in particular heterosexuals. It wasn't that long ago STD clinics worked under the notion that if a white person tested positive for syphilis, it was safe to presume they'd had sex with an Aboriginal or Asian person.
THE ALIENATION EFFECT
Aboriginal people and the media have always had a volatile relationship. Very rarely does the media report on issues pertaining to us unless it is in a derogatory fashion. We are continually portrayed as bludgers, drunks and criminals. Often, Aboriginal people are reluctant to come forward and talk publicly about many issues, and this is so when it comes to sexual health, HIV/AIDS and discrimination, whether in accessing services (either Aboriginal or nonAboriginal) or at a community level. There remains the real fear of persecution and alienation. In many places AIDS is seen as a Whiteman's disease or something relevant to homosexuals and drug users, even though there is a high incidence of male to male sexual activity - often associated with high levels of alcohol and drug misuse. There is a vastly growing and strong drug culture in most communities. Alcohol has long been detrimental. It has and remains a predominant factor to the breakdown of the Aboriginal family unit and continues to have devastating effects within our cultural, social and spiritual customs and beliefs.
Now drugs such as marijuana, speed, petrol sniffing, pills and heroin are totally decimating our people. For young people, some of whom have had little or no connection to our traditional beliefs, values and lifestyles feel completely lost, unable to assimilate into mainstream Australian society due to issues such as racism, often low, if any self esteem, poverty and poor education. They also feel unable as city-born and bred to connect with their Aboriginal spirituality or culture: the so-called "lost generation". Some as young as eight have a history of drug and alcohol abuse, with many also involved with the sex for favours street scene. Many are now third or fourth generation welfare dependent and or third or fourth generation alcoholics.
Of fifty young [injecting drug users] I spoke to in the past three months who are injecting drug users forty came out as hep C positive. Only five came out as HIV positive. Three who came out also identified as gay and also had dual infections, hep C and HIV. The other two identified as straight but had on occasions had sex with other guys and also shared dual infections. There was also a disease hierarchy prevalent and in particular when people were forced into a situation where they had to share injecting tools. If you had no known viral infection you would use injecting tools first. If you had hep C, you would go next and if you had HIV, you would go last. This culture was also prevalent in jails. This disease hierarchy also existed within the sexual activity of this group of people. 'Who had what' impacted on the various degrees of sexual activity, most preferring not to use condoms.
Most of the people diagnosed with hep C were tested in jail with no pre or post-test counselling. Two of the five people who were HIV positive were tested in jail. When they were informed of their status they were immediately placed in isolation. A common occurrence so I was told. They were outed due to being placed in isolation. From the many discussions I've had with IDUS and PLWHA, involuntary testing in hospitals and institutions was quite common.
There is a general reluctance within our communities to have HIV tests. Many feel they would rather not know, as they are contending with the issue of multiple deaths within their family and communities. Dr either they or a close family member are already contending with life threatening issues and or serious health problems. Many also feel their families are over-burdened, and do not want to contribute to an ever-increasing family load. Many young people shared the belief: "Why worry about AIDS because if the cops don't kill me, the drugs will".
Another common trend with Aboriginal PLWHA is they find out about their status once hospitalised with an opportunistic infection. This has often been too late and hence [led to people] dying prematurely. In the past, many of the drugs available seemed to shorten lives as opposed to enhancing. Often death is imminent within weeks of starting treatment.
In general, our people won't take treatments: 'early intervention' and 'compliance' are foreign languages. Treatments are seen as not conducive to us maintaining our often-nomadic lifestyles, as the majority of Aboriginal people maintain strong links to rural communities, often encompassing long journeys and in extreme and harsh environments. People are often outed by having to carry around large quantities of drugs and many are drug and alcohol dependent and or malnourished. Many feel there is little or no relevant information about treatments and their interactions with other medications like insulin.
Every state and territory has an AMS [Aboriginal Medical Service], often staffed by relatives or close friends. This makes confidentiality a major concern. The AMS are usually under-staffed, under-resourced and expected to do everything. Given the range and complexities of health issues, HIV/AIDS doesn't have a very high profile or it's not seen as a priority.
Aboriginal people often feel uncomfortable accessing mainstream services like hospitals, surgeries or clinics, as there is a real sense of cultural bias, insensitivity or blatant discrimination. Given the history of diseases, the drugs that have been given out and taken without clear advice or information and often without consent. There is a real perception of mistrust for those who are supposedly there to help.
We have all grown up hearing the horror stories passed down from generation to generation. Each one of us has our own to pass down. More recently, Depo-Provera: Family and Community Services encouraging sexually active teenage Aboriginal girls to have an injection they knew little about, which is still causing horrific deformities to babies and has been the cause for many women too not only miscarry but become sterile. To this day, there has never been a treaty signed or an apology from any Australian government. Our people have felt alone and abandoned by the world. With United Nations [UN] organisations hiding behind the statement Australia is a developed country. Developed - but by whose standards? Amnesty International and the Anglican church have tabled human rights violations to the UN. Australia is compared to South Africa time and time again. But Indigenous Australians' issues are dismissed because we have access to an Equal Rights Commission and a so-called democratic legal system, supposedly designed to protect us all as Australians. The bottom line is: unless you are white or an educated or wealthy person, it really doesn't work effectively for those of us living under the poverty line.
At the moment in Australia there is a huge debate over Aboriginal rights to negotiate access to traditional lands. The government as part of their policy development is now deciding what you must do and be to be regarded as an Aboriginal. This forms part of the Native Title Bill. There seem to be these huge issues which continually overshadow all the other issues like health, housing and employment etc. At times it feels like a conspiracy to keep us disempowered. It keeps us physically, spiritually and mentally exhausted. Meanwhile we become more ill, and die prematurely: a modern form of genocide, so we will just die off and the government can't be blamed.
'JUST ANOTHER LIE'
PLWHA are still dying and being banished from their communities or simply vanishing off the face of the earth. Being forced to live in isolation, still dying alone and in shame. Sadly, there are many that believe PLWHA get more benefits and receive better treatment. Basically if you get AIDS you're better off - what a way to have to find out it's just another lie.
Now as we reach the millennium many of our elders believe we will not survive the next century. We too will become extinct, as many of our animal totems already have. Time and time again, human rights watchdogs make statements that we are the most impoverished peoples in any of the so-called developed world. Monies are made available for us to produce some very good documents and health strategies. There just never seems to be enough monies available to implement them or train the appropriate people to put the documents to use.
We as PLWHA are seen as the passive recipients of treatments, care and support. Out gay males remains the most AIDS-literate group even though there isn't a strong or consistent culture of safe sex. Women partners of men who have sex with men and the female partners of IDUs, whether they use or not, remain the highest risk group. Even if the women know about homosexual activity within their community or home they are not empowered to promote or enforce safe sex. In a drug-using environment they will always use the needle after the male partner. Sex for favours is common within our community; sex is given for food, clothing, alcohol, drugs or just a bed for the night. Condoms are rarely used no matter how available they may be. The World Health Organisation recognises Indigenous Australians are at extreme risk of the next wave of HIV infection and AIDS-related deaths. But we remain a small group of people under-represented and under resourced. *
RODNEY JUNGA-WILLIAMS is an Indigenous Spokesperson for the National Association of People Living with HIV/AIDS. He has been a HIV activist for many years. This is an edited version of his Country Report, written for and presented at a Hong Kong Human Rights and PLWHA Training Workshop, held in May this year.
ANWERNEKENHE II: Us Mob'
AMONG, WITHIN AND BETWEEN
FOR ALL AUSTRALIANS?
VAST DISTANCES...VAST DIFFERENCES
BOYS TO MEN
For more information on HIV/AIDS and Aboriginal and Torres Strait Islander people contact the Australian Federation of AIDS Organizations