Marcus Schmidt

NORTHERN TERRITORY AIDS COUNCIL / NORTHERN TERRITORY AIDS & HEPATITIS COUNCIL 1988–2014

    There was a significant body of work done by NTAC at the time to establish a needle syringe program in Palmerston ... So, safely injecting, having education programs for prisoners, getting information to prisoners on their pre-release program prior to release to community ... I think valuing that diversity and actually getting its voice in – I think that was important.

    I arrived in Darwin in 1985, aged 20, and within weeks I met a person who had an ‘AIDS’ diagnosis. Whilst I was aware of this new illness, to my knowledge I had not previously known anyone who actually was infected with this lethal virus. As it happened, we became close friends until his death some six years later. HIV-positive people were a relative rarity in the Territory in 1985, although that was to change rapidly. They weren’t called HIV-positive people then, they were called ‘AIDS victims’. This was technically correct as although it wasn’t understood at the time, the progression from contracting the HIV virus to developing Aquired Immune Deficiency Syndrome, and the multitude of life-threatening illness that resulted, was very rapid. So, ‘AIDS victims’ was a common term for those who contracted this terminal disease in those days. And, of course, that brings up a whole heap of other adjectives that were used to describe them.

    I was aware of, but not directly involved in, the moves to establish NTAC in 1986. I was aquainted with Dino Hodge, Terry McClafferty, and Simon Nish – who, amongst others were all actively lobbying for services to combat the impact of AIDS in the NT. My memory of going to the NTAC office for the first time was when it was in Jape Plaza in about 1988. I recall meeting Iain Butterworth, employed there in a community liaison role. I also recall meeting the President, John Dunham around that time. 

    Jumping forward a little bit, and I’m guessing it was possibly around 1991, I was aquainted with Mark Wilson who, at the time, was the Vice President of NTAC. Mark was a NT government worker at Treasury. He had contracted HIV and was relatively public about his diagnosis. In those days a lot of people became public about it because somebody else made it public for them, and that may have been Mark’s experience. I do recall he did take a public profile about having HIV. That was significant in the context of Darwin at the time because he was a public servant, so he knew a lot of people and he was willing to do that. He also knew he had little time. People didn’t have a lot of time in those days.

    Mark asked me to consider going on the Board of NTAC. I explained that I didn’t have any particular skills for a board position. I was a young bloke in Darwin. And to my shock, within a week of that conversation, Mark died. 

    Through people I knew, I become more involved in supporting people who were ill with AIDS. NTAC staff member Bill McMahon, who was the Care Support Coordinator, would identify people and what practical assistance they might need. So I would find myself being called to jobs where somebody needed their lawn mown, or some other practical assistance. Particularly at that time, there were heterosexual people or people who identified as heterosexual who had contracted HIV before much was known about the illness and its various modes of transmission. I met them and sometimes I got to know them a little, or a lot, and I got to know something of their lives.

    Usually the person receiving the support was quite frail, so I got to meet the people close to them. Through that I met some wonderful people, who were often quite isolated in their experience of caring for a loved one who was dying from an incurable disease that was highly stigmatised and feared. 

    Occasionally I run into a family member now, some twenty-five or thirty years later, which is kind of sweet because we sort of know who each other is and what we did for each other, and what their life experience was at that point in time. Context wise again, HIV – or AIDS as it was called – was quite a taboo illness and highly stigmatised. And so people whose family members had HIV/AIDS were often similarly stigmatised.

    In the late 1980s a personal friend, Royce (Roy) Dunbar, moved to Darwin from Perth. After a period of time living in Darwin working at the Casino, Roy become the Executive Director of NTAC. Perhaps responding to the earlier recommendation of Mark Wilson, I joined the Board for a period of time. At that stage NTAC was located on Knuckey Street, at Winlow House. The President was Jan Stafford, and Roy Dunbar was the Executive Director at the time. I’d done maybe up to twelve months of attending meetings and trying to make sense of what was going on, but it wasn’t where my skill set was at at the time. So I just didn’t continue in it and, to me, I felt that I wasn’t able to contribute effectively. I retained my volunteer activities however, and over time this evolved into more direct personal care as there was a big need for this.

    NTAC assisted a UK group of HIV-positive people and their carers who visited NT on an event to educate people about the disease. From memory it was called ‘Expedition Aligator’. I think this was about 1992 or '93. Billets for this group were sought and I was able to host a young woman and her carer from the UK for a few days. A straight girl in her early twenties, she had contracted HIV from a sexual encounter with a man she met whilst living with her family in Africa. The education tour – which took the group by bus to Tennant Creek and back to Darwin over a couple of weeks – was an attempt to bring the reality of ‘AIDS’ to the general community. It was very affecting meeting these people who had travelled so far. We all knew they were on very limited time, and were all quite young. There was no effective treatment at the time. 

    Five years on from my arrival in Darwin in 1985, the personal impact of HIV/AIDS was utterly unavoidable. Numerous people in my immediate social group had been diagnosed as ‘HIV+’ and some had died. My closest friend, who lived interstate, died in 1991 and it seemed that the devastation of this virus was unstoppable. 

    Bill McMahon contacted me one day because somebody who I knew was unwell and needing care in his pensioner unit, as it was always the case by that stage. His friends and family had more or less withdrawn because of this person’s relatively erratic behaviour. He had what we now know as AIDS-related dementia, but people didn’t necessarily grasp that. So sometimes he was very disoriented and difficult. So people that were particularly close friends got a bit sick of him. And I knew this guy and Bill asked if I would help out. So I joined what evolved into a 24-hour care roster. The people that were providing the practical support and the day-to-day comfort were predominantly older women, carer volunteers from the Red Cross or similar services. And he was a gay guy in his late-thirties, quite dependent, pretty much bed-ridden, and his only real social connections were medical staff and well-meaning carers, but from way outside his social context. So what I found really rewarding was to rock up at his place, and at various times he may have been laying there pretending to be dead or whatever, and I’d go in and just go to his record collection and put on a record and then start doing the dishes and emptying the ashtray. After a little while I’d look across and I’d see his finger was tapping and his toes were moving and he’d yell out to me something such as; "Oh she was good. I saw her at the Palais in 1972". So I got the full story of Diana Ross. And then I got the full education on Phoebe Snow or on Nina Simone or on which other person that he had a record of. And so I was getting educated through his record collection and he was reliving his glory days.

    At other times dementia would visit. I found him one night sitting in bed with the telephone cord wrapped around him and he looked up and he said, "Thank God you’re here". I said "Why?" He was very distressed and agitated. And he said, "Fucking room service. The amount of times I’ve stayed in this hotel and you’d think I could get some fucking room service". I said, "What was it that you – "Oh I want some fucking burger and chips". And I said, "Oh okay, maybe I can help you with that", and I unwrapped the cord and took the phone off him and he laid back in bed, and he looked over at the television and then on came Neighbours – and he said "I used to watch this all the time when I lived in Darwin". He just settled down and watched his TV while I went off and got him a burger. At that moment he had no comprehension that he was in his pensioner unit in Darwin, and not his favourite St Kilda Hotel, all along.

    So in a way, it was really good to be a young person supporting other young people at this absolutely pivotal part of their life. They were dying.

    In the earlier days of NTAC’s establishment it seemed that the media, the government, anyone was looking for any excuse to find a problem with NTAC. Blood-borne virus (BBV) transmission was (and is) a highly stigmatised issue – and NTAC was firmly in that space. So heaven forbid someone finds a syringe in the street or even worse still a child’s playground. Or just over the road fifty metres from the needle exchange, they find a thousand of them or whatever. You know, of course, three days of NT News is basically taken up with hysteria. And this went on and on. It is against this social context that NTAC/NTAHC’s achivements over time are so significant. 

    I had the opportunity to watch on as many talented and committed people contributed to NTAC/NTAHC over the years. I stress there were many!

    Christine Weir arrived in Darwin from Adelaide in around 2001 and joined the Board around this time, as did Christine Fitzgerald, another person whom I knew and encouraged to join the Board. Christine Fitzgerald was significantly involved in the large body of work required to align NTAC with Hepatitis Australia, amongst other achievements.

    Chris Weir, who was working with me in the prisons, identified the need to do two things through our prison system. One was to improve access for HIV-positive prisoners to medications and supplements. But also to challenge the prison’s notions around blood-borne viruses (BBVs) in general. So, teaching safe injecting practices to people who would leave prison and use injecting drugs, having BBV education programs for prisoners, and getting information to prisoners about community services available on their pre-release program prior to release. So through that initiative we would bring in workers from NTAHC to educate prisoners and staff and through this, to support prisoners who had BBVs. Getting a supply of condoms into the prisons was a step too far – and to my knowledge the provision of condoms has still not been achieved in NT prisons.

    I’ve had nothing to do with what was achieved in this particular area – but there was a significant body of work done by NTAC at the time to establish a needle syringe program in Palmerston. Certainly there was a strong conservative view against this proposal by the Palmerston Council, and the government was reluctant to intervene. So there was a significant piece of work in getting that project approved. Petra Jackson was the worker involved, and Chris Day initially, then Frank Farmer, was the Executive Director when this was eventually achieved.

    Frank Farmer arrived in the role of Executive Director and established a term of effective leadership and stability for the Council. Not that it had been particularly unstable, but there had been some machinations towards the end of Chris Day’s time that had been unsettling for the agency. We’ve seen that occur from time to time. Frank came in and reset the agenda. He’d worked a long time at the WA AIDS Council. He was a very capable operator and guided NTAHC’s development and expansion very effectively during his tenure.

    Somewhere in the early to mid-2000s I re-joined the Board. I was at the official opening of the Alice Springs office when it was established at Railway Terrace under NTAHC. The Deputy Administrator conducted the opening and Jill Mead had recently taken up the Coordinator position. Jill and her team, including VJ Thorpe and others, did a great job of establishing the service in Alice Springs, particularly their work engaging with Indigenous people and service providers. They got it moving. You know, to NTAHC’s credit, it’s still there, still in the same place, still operating; it’s a fabulous little outfit actually. Whilst the majority of the Board meetings were Darwin based, the Board did convene in Alice Springs on occasions. We had planning days in Alice Springs. 

    Dawn Lawrie joined the Board as President and held the role for a considerable period. The AIDS Council had by now become NTAHC. The Board and the Executive Director had positioned it as a serious and relevant NGO with national linkages through the Hepatitis Australia and the ongoing AFAO affiliations. NTAHC’s local profile became more generally accepted and positive in no small part due to the respect that both Dawn Lawrie and Frank Farmer earned through their respective contributions. Notably also was the ongoing official Patronage of (then) Supreme Court Justice Sally Thomas, who also consistently and quietly maintained/s a significant and often unseen contribution in supporting the aims and objectives of NTAHC and the diverse population it serves. 

    Frank Farmer resigned, having attained a position interstate. This triggered unforeseen movements at the Board. The President resigned to contest the vacant Executive Director position and was unsuccessful. A panel selected Barry Horwood as Executive Director. The Vice-President, Neil Ludvigsen acted as President for a short while. The Secretary was Damian Dempsey. And he left the Board and I’d been on the Board a while. John Carsen had been on the Board a while. I think Chris Weir was still on the Board. There was a lady in Alice Springs, Jodie Carr, Leanne Melling was also a long-term board member. Peter Tiffin was the Treasurer but was stepping down at the end of his term to relocate interstate. But the President position was vacant and Bob Callaghan came onto the Board as President for just a few months before he resigned. This created a problem on the Board. We had Barry Horwood relatively new to the Executive Director role and we had no President-in-waiting, and things were flaying around a little bit. John Carsen and I both said "You take it" and John didn’t want to and, frankly, neither did I. In a way, I’d become the accidental President at that time. There’s a lot of responsibilities to take on that role. This was probably all within six months of Dawn Lawrie stepping down and Frank going. 

    It was a hard gig. Amongst the duties of President there is a responsibility to maintain effective relationships with the operational management team, primarily the Executive Director position which reports to the Executive Board; to chair regular Executive and Board meetings (all members are volunteering their time); and to also effectively represent the interests of the membership, consumers, and stakeholders of the organisation. 

    The foundation members of NTAC had, I remembered well, quite deliberately positioned NTAC as a ‘broad-based community organisation’ in its Constitution. I always had the view that collectively we had the aims and objectives as detailed in the Constitution to uphold; as President I took the view that as we are a small community locally, we couldn’t split into three or more different organisations to respond to HIV, hepatitis, and other BBVs. All consumer groups needed to be heard. 

    My experience on the Board at NTAHC was that acceptance of diversity was not a given even though we all live under a rainbow. For a period we had a person on the Board who was occasionally ‘on the nod’ at Board meetings. And I would get lobbied by other Board members to have them removed from the Board. And I was like well "No’, because when she’s with it, she’s really with it, you know". That’s the reality of what we’ve got here, what we include and represent. 

    Going to the national meetings in my role as President was helpful personally because I was able to immediately get some support from some other Presidents, hear from the consumer organisations, and from staff of other agencies. So some of that was about where NTAHC can contribute to the national agenda; how do we, as the NT, raise our issues that are similar or different to what’s happening elsewhere. For example, the issues of the HIV sector is quite different viewed from ACON versus viewed from NTAHC – and how to actually articulate that.

    A relatively short period of time after I was in the role of President it became apparent that NTAHC was not being administered effectively. I consulted with others and took action to ensure the ongoing viability of the organisation. We called for an audit and commenced negotiations with the primary funder, Territory Health, around the administrative challenges that we were facing. During that period Barry Horwood retired.

    Colin Burden was a NTAHC program manager working in Darwin at the time. Colin stood up to act in the role of Executive Director. And this is, from the point of view of President, very challenging because of the change of management, the audit of all programs going on, the funders were cautious, and staff were feeling the strain.

    The Executive Director position was advertised. Colin was selected. Colin was an experienced medical administrator and he worked in the role for a little under two years. Colin knew he had limitations in his knowledge of broader policy issues specific to the BBV sector, and the Board knew that, but he also had many strengths. After where we’d been, he was a good appointment. The agency’s programs were operating well, funding was again secured, and staff were, in the main, satisfied and productive. I was preparing to step aside from the Board when Colin came to me to announce he was leaving the position and moving interstate! 

    We then went through another recruitment process and Alison Edwards was selected as Executive Director. Alison was very quickly across the brief, and was able to contribute very effectively and strategically at both the local and national level. She had good political connections at the Commonwealth and NT level, and with Indigenous people and organisations from her previous roles. Alison identified with the LGBTI community and was willing and able to engage the sex worker and IDU consumers and representative agencies. So she was able to calibrate the programs NTAHC delivered to link these directly to the consumer communities. I think her appointment was a hugely important and timely placement for NTAHC.

    During my term as President, the Board agreed for NTAHC to become a founding member of the LGBTI Health Alliance, a national advocacy organisation. I considered this a very important initiative because this entity could lobby for broader health issues than BBV that impact LGBTI people – and that this may reduce the expectation on NTAHC to encompass these issues in addition to its core business. Related to that - and it didn’t happen in my time, but it’s happened under Bill Paterson’s leadership; is the formation of the Territory Rainbow Alliance. Now, sure, no doubt it has its life force associated with NTAHC but it is a separate entity. You know, it has its own identity, but it’s important that the matters of relevance to the LGBTI and affiliated commuities have an independent platform. 

    Notwithstanding my confidence in Alison’s capabilities in the role of Executive Director, she was unpopular with some, as, no doubt, was I! There was a period of agitation and disturbance which played out in part in procedural actions of the membership and with the support of some Board members which were, in my view, an unfortunate distraction at the time. 

    Some changes had occurred on the Board. Bill Paterson joined (from memory as Vice President). Trish Crossin (Senator Crossin at the time) was also elected, and Larissa Ellis joined from Alice Springs. Trish Crossin was assisting on the Constitution Review sub-committee of the Board. A review of governance was commissioned by the Board. This was a signficant step for NTAHC as it began a process to broaden the understanding of the key elements of governance of the agency, and to provide advice on how to implement change in the governing structure and roles. 

    Now I was approaching the end of my second elected term as President, feeling quite exhausted after about five years in the position, which included three incumbent Executive Directors. I remember approaching Bill during my term as President to see if he would even consider it. And at the time he wasn’t considering that the presidency was for him. But it became for him. I stood down at the end of my term. Bill Patterson became President. I recall it being a smooth transition to Bill.

    I was aware that given the circumstances that led to my initial appointment as President, it was important that succession planning had occurred, and followed through. I remained on the Board, occupying an ordinary member position for a further twelve months. My observations of Bill in the role of President was that he was very good at it. 

    At some stage early in Bill’s term as President, Alison resigned. After Alison left Craig Cooper was appointed Executive Director. I was still on the Board at that time. The governance review report was finally delivered. Bill ended up taking that forward – implementing the various recommendations with the Board after my time. That was a good and necessary thing to do. 

    On reflection, it has been a privilege to support the work of NTAHC over the years, and to try and make a useful contribution where I can. I remember well the many, many people who were impacted by the devastation of the early years of the AIDS virus in the NT and elsewhere. Fortunately, this virus is now more effectively treated, as recently is Hepatitis C. 

    And always, to me, I always bring it back to that – what do we do about blood-borne viruses today? Who are the people that we need to be working with now? Yes, there’s all this other stuff out here that’s really great to get involved with, but when you’ve only got a few staff, and a relatively small amount of money, it’s important to bring in those minority voices, and to listen. I think valuing that diversity and actually getting its voice in – I think that is so important. I hope I was able to do that in a compassionate way.