On 31 August 2012 at New Hall, Sydney Grammar School, my dear friends the Acacia Quartet will perform Mark and Adrian are her sons, an excerpt from my composition String Quartet which is an ongoing memoir I’ve been writing since 1988. I tell the story behind the work below.
A recording of this performance will be posted here afterwards. But if you’re in Sydney, please do attend – ticket information is here:
Bookings: City Recital Hall Box Office online or phone 02 8256 2222 or 1300 797 118
Update, July 2014: you can now hear these recordings from the album release of the entire AIDS Memoir Quartet.
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Sometimes, people who are engaged in a common goal come into conflict with one another.
I arrived in Australia on Christmas Eve, 1990, in the middle of the bleakest years of the AIDS epidemic. It seemed as though there’d never, ever be a tomorrow. People, mostly gay men, were dying and dying young, the majority aged in their 20s to 40s.
Having been a founding member of ACT UP Madison in Wisconsin, I immediately joined the Sydney chapter of this militant posse of activists. ACT UP was known for its media-savvy protests, using street demonstrations and provocative stunts to draw attention to AIDS issues. As anarchic and fractious as they were, all the ACT UP chapters around the world had one focus in common: getting every person with AIDS access to experimental new treatments.
And indeed most of the activism I was personally involved in related to treatments access. This was my speciality, given my scientific and medical training. My ‘affinity group’ (as we called a cell inside ACT UP) had meetings with senior physicians and pharmaceutical companies to design new trials and expanded access programs. However, there was one time when I took part in a protest organised by another affinity group – the one working on discrimination issues – and it resulted in an oddly haunting experience for me.
The social stigma around AIDS was intrinsic to the whole AIDS problem. AIDS was perceived as a dirty, sexual disease. There was no greater proof of this than the 1991 “innocent victims” incident when NSW Member of Parliament Franca Arena sought financial compensation for what she regarded as a special group – the “innocent victims of AIDS” as she called them, or people with medically acquired HIV. This special group excluded other people with AIDS, meaning gay men or by implication the “guilty victims”, though she wasn’t so brazen as to use the term.
ACT UP’s view was that all people with AIDS should be treated the same way. If there’s to be financial compensation, it should be for everyone. The symptoms of the disease were the same no matter how you acquired it. Everyone’s needs were the same.
I joined this protest because I knew it wasn’t an easy point to get across. On the surface of it, it seemed sensible that people who acquired HIV through a medical procedure like a blood transfusion should be entitled to compensation – but this is true only if there’s negligence. So it comes down to whether the medical community collecting blood and performing the blood transfusions could have prevented the transmission but failed to do so. And the answer was resoundingly ‘no’ – virtually all of the cases of medical infection happened before there was a usable method to test for HIV in a donor’s blood. How can you be held negligent when it was beyond your power to stop it?
Lawyers also raised the alternative idea of a no-fault compensation like the ones given to victims of natural disasters or of violent crimes. Given the no-fault nature of the compensation, it would be distributed either evenly to all people with HIV or on a means-tested basis, regardless of how they became infected. Precisely this kind of compensation was supported by Michael Kirby, the openly gay Justice of the High Court of Australia. If a no-fault scheme were set up just for people with medically-acquired HIV, that would be baldly discriminatory.
Despite all these arguments, Franca Arena proceeded to hold a Parliamentary inquiry into exclusive compensation for cases of medically-acquired HIV. ACT UP attended a hearing at New South Wales’ Parliament House in order to testify. In fact ACT UP had two affinity groups for this action; one was there to testify and the other to plaster protest signs on the walls, a move to goad media coverage. As soon as they did, that affinity group was quickly removed by Parliament security, as they knew they would be, leaving the others including me to testify coolly amid the suddenly-heightened tension.
As everyone exited on the finish of the hearing, Franca Arena and I found ourselves next to each other in the corridor. This was unplanned. The unexpected proximity with her made my activist training kick in. I started directing questions at her, fully expecting answers – doesn’t she realise she’s pitting people with AIDS against one another by throwing crumbs and asking them to scramble for scraps? Why can’t she focus on the important issues, like getting new drugs for people to live longer, rather than giving them meaningless money to spend during their painfully shortening lives?
With every question that she refused to answer, I raised my voice. She tried to walk away but I followed her until she disappeared through a door. All the media had left by then, except Channel 9. It was the only station to catch it on camera, to the chagrin of other media who tried to grab interviews later but didn’t have the “money shot” of the confrontation moment. And then I was ejected by security.
That night, two police officers suddenly appeared at the ACT UP office in Foster Street, Surry Hills to question us. Their purpose was evidently to intimidate and deter. In the beginning it was a little unnerving to be questioned by the two young (and inexperienced) officers, but as it collapsed into the clumsiest good cop/bad cop routine you ever saw, I relaxed into a state of bemusement. It helped that I wasn’t alone; Michael was a fellow activist who’d been with me the whole day and stayed as my witness while I was being questioned. ACT UP was very legally canny; it counted lawyers amongst its membership. We would receive clear briefings before major demonstrations to know exactly where the legal limits were. In fact sometimes we even designed protests in order to be arrested, if there was media leverage to be gained, but we were never arrested without that being our intention. That night Michael and I made sure the cops left with a new respect for our cause.
But also that night, my thoughts kept returning to a look I saw when I locked eyes with Franca Arena in that Parliament House corridor. There was a terror in those eyes, and it had nothing to do with me. Something was frightening that woman to her core, and I sensed that if I could only find out what that was, I would understand her obsessive motivation behind this “innocent victims” campaign of hers.
I did find out. It turns out both her twin sons were gay. And I got it. I understood the terrible conflict. She loved them and hated the fact they were gay. She hated it so much she tried committing suicide, I discovered. She even said in a newspaper interview later, one gay son was bad enough but two is “the greatest sorrow of our lives” for her and her husband.
Understandably, she and her sons were estranged, ever since sometime in 1990 when she found out they were gay. When they failed to show up for the family Christmas gathering in 1990, she reached her lowest ebb. Soon afterwards, she attempted suicide using sedatives and was saved only because her husband returned home on a hunch and suspicion. Arena then threw herself into her work and established the Parliamentary inquiry.
I didn’t know then, but my confrontation with her occurred in the immediate wake of these wrenching events. The campaign about “innocent victims” was clearly the tangible expression of her inability to resolve a powerful internal conflict – her love for her sons versus her distaste of homosexuals. By establishing the campaign, she was doing something about AIDS, which was an issue that greatly affected her gay sons, yet she maintained the ‘wrongness’ of homosexuality by excluding anyone who resembled her sons from benefiting from her actions. Love and hate became confused for one another.
When I realised this, I was struck by a tugging feeling, which I only later recognised as compassion. I still thought what she did was wrong, but I also knew that we all do our best with the mental and emotional resources we have available.
I’ve never met her sons, Mark and Adrian. What I do know is that they’ve since reconciled with their mother, which makes me happy to know, and they live overseas now. I’d like to believe Mrs Arena has come to terms with gay people generally too, and she leads a happy life regardless. And I respect her for her honesty. I found an autobiography she wrote some twelve years later in which she admitted there was hypocrisy in her behaviour, because she would have counselled a friend with a gay son to simply accept the matter, but she couldn’t do it herself. “I too had deeply engrained prejudices and I hadn’t really been aware of them,” she wrote. Such self-awareness can only be the result of a long personal journey for her.
The music of Mark and Adrian are her sons was sketched during this time. I wrote the second half of this piece thinking what it must have been like to be Mark and Adrian, to know that your mother tried to kill herself because of who you are. I felt a consolation that they had each other in the times they didn’t have their mother. I have two brothers who are twins, and I have seen in the shared world between identical twins a fortitude unavailable to any other type of siblinghood.
The main melody of this section is as beautiful and as pure and as compassionate as I could make it, shared between the two violins, like twins who finish each other’s sentences. And there is a second, nearly Baroque motif. It came unbeckoned and took me by surprise, but I knew right away what it represented. It is the Stabat mater; Franca Arena’s staunch Catholicism showed up as the medieval poem about Mary’s vigil at the cross after the crucifixion of her son Jesus. It is a powerful symbol of a mother’s suffering and I let it stay.
The first two sections show the two states of mind I ricocheted between in those days. The vulnerable opening section is a natural state for me; introverted, slightly shy and in love with beauty and the sound of beauty in all its strangeness. If I could have spent all my time listening to and writing music and sharing it with the people I loved, I would have. But I lived during the darkest days of the AIDS epidemic and I couldn’t stay introspective. I had to be an AIDS activist, and this required the bravura and stridency to hold placards on the streets and to give declamatory speeches. The second section is the sound of that bravura; I call the section ‘Bad Scooter’ after the alter-ego of Bruce Springsteen, whose music I came to love from all my years in America and whose social activism, especially AIDS activism, was inspiring and an example to us all.
In the end Franca Arena’s campaign was a loss for everyone. Parliament tried to appease all sides by ordering compensation be given, but in such small amounts that the executive director of Haemophilia Foundation Australia deemed it an insult. They were expecting amounts of $150,000 per ‘victim’. Whilst the largest amount ordered by Parliament was $50,000, the smallest was a blatant $0.
Did I say that you sometimes come into conflict with people with whom you share a goal? Let me refine that. You could only ever come into conflict with people with whom you share a goal – otherwise your paths would never cross. Franca Arena and I both wanted to do something for helpless people who needed our help. We were both driven by compassion. And yet we had neglected to find compassion for each other. When I raised my voice to her in Parliament House, and when she refused to count my friends amongst the innocent, we had both forgotten to remember what Plato said: “Be kind, for everyone you meet is fighting a harder battle.”
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