David Menadue
is a journalist and an HIV/AIDS activist. He is currently
Vice-President of the National Association of People
Living with HIV/AIDS. He was awarded an Order of
Australia in 1995. He is the Associate Editor of
"Positive Living", a national magazine for
people living with HIV/AIDS and since 1994 has been
writing a regular column in the magazine of living with
AIDS.
Below are a series
of speeches David has given during his time as an
HIV/AIDS activist. He has filled roles including
Convenor of People Living with HIV/AIDS Victoria from
1989-1993, Vice-President of the Victorian AIDS Council
from 1992-3 and 1994, Vice-President of People Living
with HIV/AIDS Victoria from 1997-2004 and been a member
of the Executive of the National Association of People
Living with HIV/AIDS since 1992.
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Following is my speech to the
Annual General Meeting of People Living with HIV/AIDS
Victoria in Fitzroy,Victoria on the occasion of
celebrating fifteen years of the history of the
organisation.
FIFTEEN YEARS OF FIGHTING FOR
OUR RIGHTS
by David Menadue
PLWHA Victoria is 15 years old
this year and I have been asked to provide you with a
brief run-down on the history of the organisation. So
here goes…
On a sunny day in July 1998 a group
of people met at St Martin’s Theatre in South Yarra to
discuss setting up an advocacy group for people living
with AIDS in Victoria. The idea had sprung out of the
National AIDS Conference which had been held in Hobart
that year – where a group of incredibly brave and
visionary positive people walked up on stage at the
closing plenary and announced that they were
HIV-positive and that they were no longer content for
positive people to remain an invisible part of the
epidemic in Australia.
A member of this group was Chris
Carter who was to become the first Convenor of People
Living with AIDS Victoria when it was established after
that meeting at St Martin’s. Two central
people in coordinating that meeting were Peter
Charlton and his partner Andrew Foster. Some of us at
the meeting were positive, some were friends who just
wanted to help positive people find their own voice in
the epidemic. Chris Carter spoke about the need for a
constitution and rules for the organisation and how
important it was that positive people had control of the
organisation themselves through as democratic structure
as possible. Chris also suggested that we use the term
“living with AIDS” to counter the view that
everybody was “dying with AIDS”. There was no talk
of any difference between people with HIV as opposed to
AIDS at that stage: it was not to be until the early
nineties that the Board of PLWA Victoria changed their
name to People Living with HIV/AIDS Victoria.
Later that year in November
the first “Living Well” Conference was held at
Fairfield Hospital where positive people from around the
country attended. It was organized by individuals
involved with the National People Living with AIDS
Coalition (NPLWAC) This if course was to become the
National Association of People Living with HIV/AIDS (NAPWA)
in the early nineties – some of us still miss that
catchy acronym which sounded a little like “nipple
wack” or some sort of kinky s&m club!
1988 – Early Advocacy
Achievements
Early Convenors of PLWA
Victoria included Les Taylor and Keith Harbour. Les was
particularly well known for his efforts to get access to
AZT for positive people. In those days the State
Government had to find special funds for an experimental
drug like AZT which did not have a licence for use in
Australia. There was no Special Access Scheme for
unapproved drugs as we have today. Les went on the TV
program, Good Morning Australia as one of the first
openly positive people to appear in the media to that
time. He spoke eloquently about the need for positive
people to have access to the first drug that was known
to have any anti-HIV properties. Les and Keith Harbour
were also instrumental in getting the AIDS branch of the
Health Department as it was then, to agree to fund a
Community Centre for people with HIV. A positive woman,
Deborah Gillies was employed by the Victorian AIDS
Council to do a feasibility study into the Centre in
1989.
People with AIDS Victoria was
given an office and staff member in late 1988 at the
Victorian AIDS Council, then located in Johnston Street
in Collingwood. Peter Charlton was our first employee
and he worked tirelessly to establish the organisation,
to get the Program Management Committee (PMC) working
and to fight for positive people’s right to have a say
in the decisions that affected us. It was Peter Charlton
who first talked me into becoming a part of the PMC when
Keith Harbour was Convenor (having just stepped down
after a very active period as President of VAC). I was
still recovering from my first AIDS-defining illness, a
bout of PCP, and I wasn’t sure how much energy I had
to put into the organisation. I was lucky enough to get
better but during 1989 we lost Peter Charlton to the
virus and a range of other key activists including Chris
Carter, Les Taylor and Keith Harbour were to die over
the next few years.
1989-’93 -- The Search for a
Community Centre
In October 1989 I was elected
Convenor of PLWHA Victoria and worked closely with Dean
Michael as Coordinator, David Stephens as Information
Officer (doing Positive Living magazine and the
Speakers Bureau) and Barbara (can’t remember her
surname-sorry!) who worked on finding a site for the new
Positive Living Centre. We looked at some thirty sites
trying to find one that would meet stringent council
parking and planning requirements. When we finally found
one in Caulfield, on Dandenong Road, a huge hullabaloo
was created by local residents who complained to Council
about the likelihood of wild, drug-sharing parties,
unsafe injecting behaviour (leaving needles over the
fences) and too much extra traffic in the area. What
they didn’t say was that they were worried about land
values and the thought that having an AIDS centre there
might affect them.
In my first public statement as
Convenor I held a press conference with well-known HIV
community identity Joan Golding to try to put pressure
on the Council to agree to our planning application and
to de-bunk all those fears about us being a bunch of
wild party animals!
It attracted all the major TV stations and press
and received a huge amount of publicity. The fact that
people with AIDS themselves were prepared to stand up
and challenge the local Council was part of the story.
We lost the battle as Caulfield Council elections were
the following month and councillors realised what a
“hot potato” this issue was for their re-election!
We did manage to find a far superior venue anyway – at
46 Acland Street, St Kilda and with a far more friendly
local council as well. The Mayor John Spierings opened
the Positive Living Centre in early April 1993. The
Elton John Fund provided funding for the Centre’s
chairs, Julian Clary visited the Centre one day and
helped with fundraising, and an enormous amount of
support came from the HIV community (particularly
through volunteer work) to establish the PLC as the hub
for positive people and their friends for that time.
People Living with HIV/AIDS
Victoria was still a program of VAC/GMHC at that stage
and our program had the responsibility of managing the
Centre in St Kilda. Program managers included Chris
Gill, Bill le Neuf, Kirk Peterson and Barry Horwood. It
soon became clear to the Program Management Committee
that a significant amount of the time of the committee
was taken up with PLC matters – and the work of
advocacy for positive people across the state sometimes
had to take a back seat. This problem was partly
addressed by setting up a separate PLC Committee but
that still had to report back to the PMC for
endorsement.
The program did have some major
advocacy issues that we had to deal with at this time.
These included the fight to keep Fairfield Hospital open
when the Kennett Government started to make noises about
that idea in 1994. After I stepped down from the role of
convenor in 1993, Ian Cameron had the role for a year
followed by James Nagle. Joe McCluskey took over after
James’ death. It was a difficult time for the
organisation, with the high number of deaths of people
at that time (there were no effective drug regimens
available) and with the community anger over the threats
to Fairfield. A group of positive people led by Bradley
Engelmann had successfully managed to get elected to the
AIDS Council Board in 1994. Engelmann became President
and Nagle and then McCluskey Vice-President and there
were a number of other PLWHA Vic Board members on both
Boards.
1994 – Division on the VAC/GMHC
Board
By the end of that Board’s period
of office in October 1995 though it was clear that a
sharp division had developed in the AIDS Council Board
over the future direction of the organisation. There was
some dissatisfaction with the Executive at the time that
led to an unpleasant spat in the gay press and in the
HIV community. In the 1995 elections Joseph O’Reilly
was to replace Engelmann as President of VAC/GMHC but a
factionalised Board still existed and the Board
resigned, essentially over a failure to agree on which
hospital (St Vincent’s or the Alfred) should receive
the carryover of services after the closure of Fairfield
Hospital.
While clearly this was about the
AIDS Council’s governance and not PLWHA Vic’s, our
organisation was highly involved as we had several
people on both Boards and ultimately VAC/GMHC was still
in charge of us. A review of the organisation in 1995/6
recommended that major changes happen to the culture of
VAC/GMHC. It was also recommended that PLWHA Vic become
an independent organisation with its main role being
advocacy for positive people. It was said that we should
be there to monitor or criticise service providers –
such as the VAC/GMHC – and to not do service delivery
ourselves. This was the model for PLWHA NSW, which the
reviewers felt, would work in Victoria.
1997—New Constitution and
Rules
Gary Glare was Convenor for a short
period during the transition to a newly constituted
PLWHA Victoria in 1997. The first President (who
continues to this day) was John Daye and a number of
office-bearers including Kevin Guiney, Greg Horn and
myself, have continued on the Board since that time. At
the first public meeting to establish the revamped
organisation held at the Royal Women’s Hospital, a new
Constitution and Rules were adopted. Our first Executive
Officer was Bridget Haire. She set about working with
the Board to establish the new ways for the organisation
to function – including writing up a Memorandum of
Understanding and a Funding and Services Agreement with
VAC/GMHC. Funding was later granted by VAC/GMHC for a
part-time Administrative Assistant and Speakers Bureau
Coordinator – the first and only appointment to that
position was Max Niggl (who continues to this day).
The difficulties with the concept
of PLWHA Victoria being only an “advocacy”
organisation have been clear to Board members right from
those early days. Those of us who were involved with the
old Program Management Committee which ran the Positive
Living Centre (and unfortunately not many people carried
over to the new organisation) were angry and perplexed
about the Review’s recommendation that so much of the
old organisation’s resources were taken from us and
given to VAC/GMHC. There was some acceptance of the need
for change and some acknowledgement that managing the
PLC had dented the organisation’s ability to
concentrate on advocacy issues. But we were unhappy to
be left with such a small Budget and staff – initially
only one staff member and later a part-time assistant.
We wanted a Peer Support Officer and a Treatments
Officer and a decent budget to work with. For a while we
worked with very little and our relations with VAC/GMHC
management were strained.
1999 – Increased Harmony and
Achievements
With the arrival of Mike Kennedy as
Executive Director of VAC/GMHC in 1999, relations
between our two organisations have improved remarkably
and there has been a small but significant rise in
resources including a part-time Treatment Policy and
Education Officer (Alan Strum) appointed in the past
year. In 1999, Mark Boyd followed Bridget Haire as
Executive Officer and he was able to set up
well-received initiatives for the organisation including
developing the PLWHA Vic history exhibition Legends
and magazine
Poslink, getting funding for the PLWHA
Bushwalking Project and the AIDS Trust grant for the
Connect project. David McCarthy followed in 2001 and he
managed to increase the media profile and community
alliances of the organisation remarkably. Our current
Executive Officer Mark Thompson was appointed in June
this year and has proven himself to be a highly skilled
and energetic manager.
The past few years have seen some
highly commendable achievements for the organisation..
Some of these have included initiatives such as the
Speakers Bureau which educates school children and many
others around the state about HIV/AIDS. It includes the
Treatments Interactive Events that have produced a very
successful format to educate and inform positive people
over treatments and health promotion needs. Of our long
list of advocacy achievements, we were particularly
pleased to have obtained the promise by the then Health
Minister John Thwaites not to introduce co-payments for
medications at the Melbourne Sexual Health Centre. This
major lobbying effort on our part, largely carried out
by President John Daye, has saved positive people from
what could have been a major increase in their health
costs. Other lobbying efforts of note included stopping
the introduction of co-payments at Dental Plus, ensuring
that Fairfield House was built, achieving drug and
alcohol staff and a psychiatric liaison staff position
at the Alfred Hospital, negotiating for the introduction
a New-Fill trial at the Alfred Hospital and managing to
change a Federal Government policy which stopped
positive people accessing Options Employment Services.
A Proud History
To look back at fifteen years of
history for PLWHA Victoria, I think is to acknowledge an
organisation that has made a big difference in improving
the lives of positive people around the state through
its advocacy, support and – it has to be acknowledged
– service delivery. We help hundreds of positive
people every year with a range of issues including
housing problems, difficulties with medical providers,
assistance through our Emergency Distress Fund,
information and advice on the latest treatments, to name
a few. We have a strong, respected community profile,
are represented on major Government committees on HIV,
gay law reform and health and play a major role on a
national level with the National Association of People
living with HIV/AIDS. Positive people around the state
can be proud that we have weathered some very difficult
times, when so many of our number have died and it
hasn’t always been easy to maintain the energy and
activist zeal which the organisation needs to survive.
We have survived though, and I can
confidently say that, at this stage, the organisation is
in as healthy and secure a place as it ever has been. I
would like to give particular credit to our President
John Daye for achieving this outcome as I believe it is
his leadership and hard work that has particularly
helped the organisation to be in the strong position it
is in today. The various Boards over the last few years
have played a major role too as have our excellent
Executive Officers and staff. It would be too much to
wish PLWHA Victoria another fifteen years—we want the
AIDS epidemic to be over much before that! But for as
long as is necessary, may the organisation continue to
fight hard to achieve fair and just outcomes for people
living with HIV/AIDS in this state.
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THE ART OF
LIVING
NAPWA Conference Opening
Plenary Speech
Cairns
Hilton, November 2003
by
David Menadue
Justice
Enfield, my positive peers, NAPWA staff and the many
friends and supporters of NAPWA here today
Fifteen
years ago at a National AIDS Conference in Hobart a
group of twenty or so positive people responded to the
invitation of AIDS activist Chris Carter to come up on
the stage at the end of proceedings and declare their
HIV-positive status to the gathering. Bev Greet, who I
think is in the audience today, was one of those people
and there may be others here as well. It was an
incredibly brave thing to do at that period of time, in
1988, because there was still a lot of hysteria and
negativity around AIDS. Positive people feared
discrimination, loss of employment, housing, family
support or even personal friendships if their status
became known.
That
positive show of force on the stage at Hobart that day
empowered those present to do something about setting up
advocacy groups for positive people to be able to speak
for themselves in the epidemic. For too long, it was
said, AIDS Councils and other HIV service providers had
presumed to speak for positive people and it was
important that there were now avenues for us to talk
about what we wanted, to contribute to discussions about
government policy and to give some visibility to people
with HIV/AIDS in the epidemic.
A
commitment was gained from the Commonwealth Health
Department for a small amount of money to establish the
National People Living with AIDS Coalition – or NPLWAC
– the acronym provoked huge peals of laughter from
some as if it was short for some sort of secret s&m
club! The first Executive Officer of the new
organisation was Levinia Crooks who of course is now the
Executive Director of the Australian Society of HIV
Medicine who had their Conference here last week—and
whose support in getting our Conference together here
this week has been very welcome and appreciated. Members
of the first committee included Reg Carnell from
Queensland, Robert Ariss from New South Wales, Chris
Carter (then from WA, later from Melbourne), and Bev
Greet and Keith Harbour from Melbourne. One of the
objectives of the organisation was to set up state plwha
groups around the country. Keith Harbour who was a
prominent advocate from Victoria and others travelled
around the various states to do this -- with reasonable
success. Chris Carter had insisted that all groups
include the word “living” in their title to get the
message across that we were living with AIDS, not
necessarily dying from it. The inclusion of HIV – to
refer to HIV/AIDS as we do today-- to distinguish
between HIV and AIDS as not all people had had an
AIDS-defining illness, came later in the early nineties.
It is
unusual then that a national organisation came first
before the actual state organisations and that it played
a major role in establishing the state plwha groups. The
individuals involved with NPLWAC also played a role in
helping to organise the first Living Well national
conference of people with AIDS which was held at
Fairfield Hospital in November 1988. I attended this
Conference which, from memory, talked about the need for
advocacy with government to get AZT available for all
but also spent a lot of time talking about alternative
health approaches like yoga and macrobiotics as there
were simply no real treatments available at that time.
We also talked about how to cope with the unrelenting
grief and loss which we were beginning to experience at
that time as the number of deaths started to rise and
the full impact of what the epidemic was to mean for us
personally was just starting to become obvious.
I became
involved with People Living with HIV/AIDS Victoria from
that time but only became a delegate to NPLWAC in late
1990. For an organisation that had played a crucial role
in establishing plwha groups around the country, I was
surprised how under-funded it was. We only had a small
secretariat with one staff member—I remember it was
Mark Boyd when I became involved – operating out of
the premises of the Australian Federation of AIDS
Organisations in Canberra. Mark’s work was largely to
act as a Communications Officer to keep the various
state plwha groups in touch. Early Convenors of NAPWA
included Charles Roberts and Geoffrey Harrison. We did
get a place on the stage at National AIDS Conferences
which were held annually till 1992 and we were sometimes
taken along to meet politicians and bureaucrats by AFAO
staff but we were very much the poor cousin and the
Government made it quite clear that NAPWA would not be
funded in its own right—only as an agency through AFAO.
Bill
Whittaker took over as Convenor in the mid-nineties I
think and did a reorganisation and revitalisation of the
NPLWAC structure. AFAO’s move to Sydney had occurred
and it was opportune for a rethink on how NAPWA
functioned. Bill and others outlined a portfolio system
of responsibilities and suggested a name change to the
National Association of People living with HIV/AIDS or
NAPWA. Convenors
who helped to really put the organisation on the map and
to build its profile into the organisation it is today
were Alan Brotherton, Peter Canavan and until last year,
Phillip Medcalf.
Due to
the efforts of past President Peter Canavan and
Executive Officer Jo Watson in particular, NAPWA now has
5 full-time and 5 part-time staff including one staff
member from the AIDS Treatment Project of Australia
which sits under our umbrella. I want to thank them all,
particularly Jo Watson and conference organisers Scott
Lockhart and Nicola Addison for the wonderful job they
have done for getting this conference together for us
this week—it has been a mammoth task particularly
organising everyone’s travel and accommodation. I also
want to thank them and my Board of Directors for helping
us to make NAPWA a major player in the HIV sector these
days, a dynamic and energetic organisation which runs
its own conferences, writes its own submissions to
government on important issues like welfare reform and
the future of Medicare, an organisation with a high
profile and respect from government and bureaucrats for
the work we do and the quality of that work
The
Conference theme is “The Art of Living” on the
suggestion of Board member Jon Willis because we all
agreed it was time to focus on our quality of life at a
time when treatments have certainly reduced the burden
of illness. The changes have been quite dramatic in some
people’s lives enabling them to go back to work and to
feel relatively confident about their future prognosis.
For others it has been a much slower and gradual change
and they still are coping with a difficult and only
barely manageable disease. Others still are spending
considerable amounts of time in hospital coping with the
side-effects and toxicities related to antiviral
medication.
It is
time to focus on regenerating our lives as we are living
longer and for most people there has been a real
improvement in quality of life.
I was
listening to one of those supposedly best-selling
self-help authors on the radio the other day talking
about happiness and how to achieve it. I didn’t think
he had anything particularly new to say but a listener
rang up and said that for him, happiness came from
having the resources – be it financial, physical or
emotional --- to achieve what he wanted out of life, to
not feel out of his depth in the demands of daily life
and to achieve change when he wanted it. I thought those
sentiments worked for me, they spoke about having
control of your circumstances, having the feeling that
you had the power to achieve the things in life that
meant the most to you.
There can
be no doubt that people with serious illnesses like ours
have greater obstacles placed in front of them to
achieve that level of control over their lives. There a
real limitations placed on you if your health doesn’t
allow you to earn an income and the costs of your
illness are high as they are with HIV/AIDS. There is a
real physical limitations for a lot of us as to what our
energy levels will allow us to do whether it be trying
to carry out a job, do volunteer work, activism or
whatever. If the illness itself is steeped in stigma and
sensationalism as ours has been, and coming out about
your HIV status has serious potential implications in
society, then you have a further psychological
impediment to gaining that level of control and if you
are to believe that listener, to obtain happiness.
I don’t
think it can be said though that most of us here today
are a gloomy lot of despondents who have no control over
our lives. Many of us have survived a difficult time
either with AIDS illnesses themselves or with the often
challenging regimens which we have had to treat it with
over the years. But we are a very resilient and stoic
lot to have come through such a difficult time with an
incredibly wily virus that is still destroying lives on
a daily basis. There is a discernable spirit in a lot of
people with HIV – particularly I would argue in the
people who come together to attend these conferences.
Many of us are activists of some kind, even if you would
not describe yourself as such, we are people who want to
conquer HIV and the affect it can have on people’s
lives, we want to make a difference to the way the world
sees people with the virus and the commitment which
politicians and people of influence have to try to do
something about it. We have learnt to live with the
rollercoaster ride of highs and lows that is AIDS and we
do make a difference.
Conferences like this bring
together a wealth of experience of the epidemic, whether
it be the activists from plwha groups, the staff from
HIV agencies, positive artists and performers or those
here at an event like this for the first time—but who
have brought your own important and valuable perspective
of what living with the virus is like or how it affects
all of us. The Board and Convenors of NAPWA regard this
time as incredibly important time for us to learn about
what positive people’s issues and concerns are at this
stage of the epidemic. We have had some major battles
with governments around the country trying to get
adequate resources for HIV delivered to our agencies. We
have been very concerned about threats to Medicare and
the PBS and welfare changes which have been mooted by
the Federal Government and our advocacy has helped
prevent the passing of relevant legislation in the
Senate. We have been working hard to advocate for the
latest drugs to be approved by ADEC and PBAC: as the
list of HIV drugs becomes longer, the need to argue for
new expensive therapies like the latest fusion
inhibitor, T20, becomes that much harder. So we regard
this time as important to hear your views about what the
important things are for NAPWA to be doing over the next
couple of years.
The
program of this Conference is probably more diverse and
interesting than any I can remember in our recent
history. In line with the Conference theme, there has
been an emphasis on getting together cultural activities
including art and photography exhibitions, a mask-making
activity, book readings, writing workshops, a stress
reduction workshop and so on. We have satellites for
positive people’s groups planned. The Positive
Women’s satellite happened yesterday, the gay men’s
and heterosexual satellite will be held tomorrow
afternoon and we welcome members of the NAPWA Indigenous
Positive Network which was established in Adelaide
earlier this year and which will meet over the next few
days. The Positive Living Centre coordinators from
around the country are gathering for a workshop this
afternoon.
We would
like to extend a particular welcome to our peers from
Papua and New Guinea who are with us as part of a
week-long program of activities and workshops. NAPWA
staff, convenors and volunteers will work with the
delegates to help with the establishment of positive
peer programs in Papua and New Guinea. We are delighted
to have you with us today and hope very much that you
enjoy your time with us. Our thanks go to Merck Sharpe
and Dohme for their financial assistance to get
NAPWA’s first international project off the ground.
In
conclusion then I hope you will all feel that you are in
a safe space here over the next few days. That you are
with a bunch of peers and friends where you can speak up
and engage in discussions and contribute to the many
workshops provided. Where you can
gain something personally from being in the same
space as lot
of other positive people who have often been through
similar experiences.
I’d
just like to think back to those twenty or so positive
people who made their coming out as HIV positive fifteen
years ago in Hobart and how it was that day when the
idea for a NAPWA was first put forward. It has been an
incredibly trying time since and we have lost a lot of
friends and fought a lot of difficult battles but those
of us still lucky enough to be here have learnt
something. You can make progress in fighting AIDS if you
stay active in pursuing researchers, drug companies, and
governments to keep trying to find the answers.
Governments will be all too easily diverted from
tackling major health issues like AIDS by the threat of
terrorism or supposed global security issues. As Justice
Michael Kirby said on the front cover of a
recently-released book by an author whose name escapes
me at the moment, “AIDS is a much bigger global
problem than terrorism”. So join me in wishing NAPWA,
our peak positive people’s advocacy body in this
country, a Happy 15th birthday. May you all
have a wonderful, enjoyable and productive conference.
I’d now
like to introduce an eminent jurist and human rights
advocate who we are honoured to have here as our Guest
Speaker today. Justice Marcus Enfield is a former judge
of the Federal Court, an internationally-respected
advocate for human rights, UNICEF ambassador for
children and an active campaigner for the rights of
detained refugees in Australia. He was also President of
the Human Rights and Equal Opportunity Commission. Jo
Watson and I heard Justice Enfield speak at a Health
Summit in Canberra recently and we were bowled over by
the passion and eloquence with which he spoke about a
range of human rights issues. We thought he would make
the perfect Guest Speaker for our conference because of
his strong commitment to social justice. We are very
grateful to Justice Enfield for travelling all this way
from Sydney on his way to Perth tomorrow – and for
fitting us in to his busy schedule.
