A Personal Perspective by Sonja Ristov. Chairperson. Positive Women Victoria. \par }{\f0\fs22\cf2 'Revisiting my Eight Seconds and a lifetime'.

\par \par }{\f0\fs24 In the early eighties many of my gay male friends began complaining of unusual symptoms. A flu that wouldn't shift, dry though persistent cough and fevers, unexplained night sweats and weight loss, swollen glands; a litany of symptoms that pointed to an u nexplained break down of the immune system. By 1985, I had lost more friends and been to more funerals than I had ever thought I would manage to go to in my life. \par \par I had finished my University Degree majoring in Commu nications. The City of St.Kilda employed me as a Youth Recreation Officer. I had also well and truly made head roads into my career as an injecting drug user. Amphetamines saw me through my first years of student politics in the last days of 'free' educa tion, gruelling exams and heavy workloads. As an employed person, studying part time, maintaining a relationship my stress levels was quite high. Not being an alcohol consumer I worked my stress management plan to include heroin. \par \par One morning while reading the Melbourne Age an article on page 3 caught my eye. It was the story of a gay man who was HIV positive, but he did not feel that he fitted into any existing support groups. He felt discriminated against by gay men because he was also a user. Peter O \rquote Too le called for those interested in promoting the rights of users and in particular positive users to meet. In 1986 VIVAIDS: The Victorian Injecting Drug Users and AIDS Support Group was formed. VIVAIDS was the first peer based education and Needle Syringe Exchange Programme \{NSEP\} to operate legally anywhere in the world. We opened our doors on Gertrude Street, Fitzroy in the middle of the street drug trades and sex workers. \par \par At the same time across the other side of town in the backroom of a brothel in Prahran another group of us were working at a fever pitch on funding submissions and incorporation papers for what is now known as The Prostitutes Collective of Victoria \{PCV \}. There was a cross over with some members of the management committees of the two organisations. \par \par I have watched these two groups grow in my own state and then seen other states create similar organisations using VIVAIDS and PCV as models of successful peer based education and support. These have now grown to the position where they are national peak bodies. The Australian I.V League \{AIVL\} and The Scarlet Alliance and have a voice at a federal policies level as well as giving national support to state issues. \par \par My lover and I were talking again seriously about having children. A friend off ered to donate his sperm and I got the job of trying to get pregnant. I wasn't very good at it, as all I ever got were new infections. In late 1986 I thrashed down with a severe bout of Hepatitis B, as did a few others in our using circle of friends. Afte r that summer I was out of sorts and just not myself. I was lethargic, disinterested, with swollen glands, mild fevers, night sweats, and no appetite and unusual pain in my joints. My doctor thought it could be the last stages of a viral infection and so I was diagnosed as having glandular fever. \par \par In 1987 I was in Hobart attending the 2nd National AIDS Conference as delegate for VIVAIDS where I was employed as the 'Women and Education Officer. As the poster girl for a user rights group I was a picture of how you shouldn't look. My skin was waxy and a nasty shade of yellow. I was very ill and upon returning to Melbourne I was admitted to Fairfield Infectious Diseases Hospital and promptly diagnosed with what is now known as hepatitis C. With the support of a new partner and friends I summoned the courage to go for an HIV test. We had begun our relationship in the light of my Hepatitis and always had safe sex. The relationship changed with my positive diagnosis. Even though we were both well-educated women wo rking in the AIDS sector, we still were not prepared for my positive result. All that stared us in the face was the past five year march past of friends at varying degrees of illness. \par \par I was now working at the MacFarlarne Burnett Centre for Medical Research. I was now working as a researcher on the 'Victorian Injecting Drug Use and Communicable Diseases Cohort Study \{VICCS\}. \par \par When I got my HIV diagnosis I sought support from Positive Women Victoria. I had been involved with the initial setting up of the group including funding applications and incorporation papers. I was involved as a health professional and advocate rather th an as a peer. }{\i\f0\fs24 'Denial ain't just a river in Egypt\rquote !}{\f0\fs24 \par \par In 1993 I was 'married' with a different wife and two children. As responsible par ents we talked to the girls about HIV in language and detail that was appropriate. There was no question the girls couldn't ask. My health was going down hill. I was spending two out every eight weeks in hospital. As a family living with AIDS there was no real place set up for us to access support services. Again I turned to Positive Women for support and guidance from my peers. \par \par To raise a child in these times is a daunting task. To raise a child in a household where one parent has a life threatening illn ess and a declining health status is a whole other game. We believe both the girls are well adjusted and can take control of their destiny. When Zowie was younger and playing with dolls she would do blood works to check their T-cells and liver function te st. She would educate other children about how to be safe around bodily fluids. When learning her alphabet at school she argued with the teacher that it was H..I..V..K.. not H..I..J..K and that it was A. Z. T. not A to Z. She could describe transmission a nd even explain how the immune system functions and how HIV can 'trick' cells. I would take her with me to do appropriate lectures that I gave like the Victorian AIDS Council \{VAC\} .

Regional Support Training for prospective care teams. Zowie knows very clearly that it is what you so or don't do that puts at risk of HIV, not who or what you identify as. \par \par Imagine our horror when we returned from a short summer holiday at the beach to find our home had been broken into and totally violated. People had kicked our door in, proceeded to trash the flat, smash the computer, they took what they wanted and then painted}{\i\f0\fs24 'DIE AIDS BITCH\rquote in}{\f0\fs24 red paint. They urinated and defecated on several floors. When Zowie asked us who could hate us that much we had no idea of what answer to give. We were at the mercy of fear and ignorance. News of our break-in quickly circulated throughout the flats we. Zowie was now a being victimised by some of the mothers who would yell at their children to get away from Zowie or they would catch AID S. Zowie would try earnestly to explain that she was HIV negative and therefore posed no potential risk to their children. From her own experience and friendships with HIV positive and negative friends she knew the reality. She has other HIV positive fri ends that she has made, and sadly lost, friendships made at the Annual Camp Goodtime. \par \par There is no explanation for such unprovoked acts of aggression, violence and hatred. The AIDS Housing Action Group \{AHAG\} quickly moved us from that environment. We slipp ed back to some degree of normality but the pressure of our relationship and my health were mounting up. I was 'divorced' at the end of '97. I promptly fell into 'post divorce' depression and sought solace in an old and familiar friend.... heroin. I don 't believe that my choice was a path of self-destruction but after six months or so I realised it was not a constructive use of my time, money, talent or energy. I then decided to seek out another old friend, the Positive Women's Peer Support Group. With support I found myself and heard my calling again. \par \par So now it is late November in the year 2000. Over the past 15 years I have developed on impressive CV as an AIDS activist and injecting drug users advocate with a number of claims to fame. I am now the last surviving HIV-positive founding member of both VIVAIDS and PCV. I was the first woman to be elected as the 'Openly Positive' representative on the VAC Board. I was elected to the People Living With HIV/AIDS \{PLWHA\} Victoria, firstly as the Positive Wome n's delegate and another term as a general Board member. I was the state delegate to the National People Living With HIV/AIDS \{NAPWA\} and I have also been the National Positive Women's spokesperson on all three federal government HIV/AIDS strategies. I currently serve on the Ministerial Advisory Committee on HIV/AIDS and Related Diseases \{MACHARD\}. \par \par When I was diagnosed in 1990 the doctor told me I had a good three to five years of the same quality of life. I never expected to see in the new century with so many of the people I care about around me. When I saw my doctor a fortnight ago she happily told that because of my tremendous response to my combination therapy, I can begin to write up the invitation list for my fiftieth birthday in 2011. \par \par I am very lucky to have been born in a country that has a bi-partisan approach to public health. My hosing is stable and secure. I get a Disability Support Pension. This gives me an income to live relatively comfortably. It provides a wage and I firmly be lieve that I work for my pension payments, and I have a sense of purpose and a role to play in the greater scheme of things. I am enjoying good health and am lucky enough to access optimum health care and management with my team of doctors and allied health profession als. My life changing/saving medications cost me a mere $3.40 each. \par \par I have a little family, a great relationship and peer support. I speak and write English and I am free to travel to almost any country on this planet. I sit in a position of privilege and for that I am thankful but not apologetic. \par \par \par All HIV positive people should have the same treatment options that I enjoy without question. I am very aware of the unfairness that I feel is so easily handed out to populations in developing nations. It is wrong that these multi-national, multi-billion dollar drug companies are holding people's lives as bargaining leverage with governments and that lives hang in the balance of those whose main objective and driving force is the profit margin. Pressure must b e placed upon governments and drug companies to expand access to treatments, education and support. HIV knows no borders and needs no passport to travel the globe. \par \par }\pard \widctlpar\adjustright {\f0\fs24 In a nut shell that is my eight seconds revisited. In many ways HIV has given me permission to live a life without regret. I am doing something that I love to do, I have sense of purpose and worth and I believe I am effective in my role as the chairperso n of Positive Women in Victoria. I am validated within my community and well supported by it and the greater HIV community within Victoria. Symposia such as this are a validation of the knowledge and expertise that I have. All positive people have the potential to flourish as I have if they have a supportive home and community environment of mu tual respect, a place where we feel safe to 'break the silence' and to 'lift the burden of secrecy'. \par }\pard \widctlpar\adjustright {\f0\fs24 \par To reach a point where I can stand before you and disclose my status without fear of recriminations at home or work or to my family. The stigma associated with this disease is alive in the hearts of bigots, the ignorant and the scared. Our children need to have support through education of their classmates and school. The 'bad 'woman label is still attached to women quite freely. General practitioners do not see the risk that the heterosexual population is at. The Government has an obligation to tell women of the risks they are taking with their lives. All this starts at school where we teach

children that every person is equal; no one is more equal. The changes we implement today will bear fruition tomorrow. \par \par Thank you for revisiting my eight seconds and I you hope have learned something that they can't teach you with books. \par \par }\pard \qc\widctlpar\adjustright {\f0\fs24 -------------------------0------------------------- \par }\pard \widctlpar\adjustright {\i\f0\fs24 \par \par }\pard \qc\widctlpar\adjustright {\i\f0\fs24 I dedicate this eight seconds to my good friend, confidante and fellow activist Geoffrey Humphries. He was a founding member of 'Straight Arrows', a support and advocacy group for HIV positive heterosexual men and their families. Sadly Geoff passed away d uring the night of Wednesday, November 22nd, 2000. \par }\pard \qc\widctlpar\adjustright {\i\f0\fs24 My love and support to Geoff's wife Michelle and their daughter Tian.}{\f0\fs24 \par }}