Of far greater interest to me is that compensation should be paid to rehabilitate families where a member has died from medically acquired AIDS. It costs a great deal, both materially and psychologically, to care for someone with AIDS outside the medical system. The breadwinners, these days mostly both parents, if a child is involved, or the remaining adult, if a husband or wife, must give up their jobs for at least the last two years in the AIDS cycle. Often, because they do not belong to a gay network or even if they do, they are afraid of admitting to AIDS in the family. The fear, not always ill-founded, is that they may be forced to leave their neighbourhood or local school. Often, they are forced to mortgage their homes to keep on paying living costs and or supplying extra needed comfort to a family member with AIDS. In terms of mental welfare, other children or members of the family are often neglected or put under such severe pressure that they develop severe psychological problems. When it’s all over, not just one life has been destroyed but, in many cases, the future of an entire family. It is for these people that compensation is necessary. In the case of a haemophiliac with AIDS there isn’t even a life insurance policy to be collected, as they cannot be insured. My concern is for who are left behind. It is for this reason that I think reasonable compensation should be paid, as it has been elsewhere in the civilised world, by compassionate and caring societies.
I have been criticised in the gay media for stressing that Damon died of medically acquired AIDS, the imputation being that, by differentiating between sexually acquired and medically acquired AIDS, I am suggesting one victim of this terrible disease is innocent and another somehow guilty. This thought has never entered my head. While there is absolutely no question of innocent and guilty AIDS sufferers, there is clearly the question of a guilty medical system. By stressing that my son died of medically acquired AIDS I am pointing to the medical profession, the attendant politicians and those people in the health care bureaucracy who allowed cost and the fear of upsetting what they regarded as a potentially powerful minority faction to lead to the deaths of a small, unimportant and apparently expendable group.
No guilt can reasonably belong to the AIDS sufferer; patently HIV does not differentiate between the homosexual or heterosexual. The responsibility for Damon’s death must be laid squarely at the feet of a myopic medical and health system and the men and women who made the critical decisions during this period. There is sufficient evidence to suggest that they knew what they were doing. If they didn’t know, then the indictment is even greater, because it was their professional duty to know. Either way their actions perpetrated a form of institutionalised manslaughter for which, in the end, they must accept responsibility.
What clearly happened was that the collective conscience wasn’t questioned, the moral decision was, in each instance, left to somebody else. In plain language, “I was only doing my job, following orders", remains the worst of both moral and institutional excuses.
Human lives should count more than balance sheets, but the introduction of AHF was clearly a monetary decision – it was cheaper to buy and cheaper to store. The introduction of the blood factor concentrate in a more convenient powder form was arbitrary, cynical and instituted without even superficial concern for the consequences which were, even then, apparent after the most casual perusal of the available facts by any half-competent haematologist. However, when you habitually think of people as a statistic and not as heart and mind, muscle, sinew and good red blood, as was done with the 260 known medically acquired, HIV-infected haemophiliacs in Australia, it is easy to sacrifice them for a better looking balance sheet. This is still the case today. In a statement made this year to the Standing Committee on Social Issues of the New South Wales Parliament, a spokesperson for the Commonwealth Goverment said:
“The Commonwealth Government has made an assessment that, in general, health authorities were not responsible for medically acquired HIV and, on this basis, legal aid may soon cease to fund these cases.”
Soon the problem will have disappeared altogether, as the last of the HIV-infected haemophiliacs and others with medically acquired AIDS die or the legal statute of limitations applies. Distraught, broken and mostly debt-ridden families will be left to cope for themselves in a nation whose politicians don’t appear to give a damn and are more interested in covering their backsides than uncovering the truth.
Shame! Shame! Shame!
Beloved Australia, I am terribly ashamed of you. Ashamed that as a country we acted this way, ashamed that no one seems to care, ashamed of politicians who have ducked for cover, of doctors and other bureaucrats who have ignored the rights of individuals who died through lack of care or responsibility and who have wilfully confused evidence to prevent themselves from being indicted.
How shall I ever stop feeling bitter?
Twenty-three
Micro-organisms that Lurk on the Fringes of Human Existence and a Lopsided Rabbit named Cassidy.
Damon stayed at Rose Bay for a month while Celeste continued living above Dinky Di Pies, which was reasonably close by. It was during this period that we all came in contact for the first time with the AIDS network. CSN, Community Support Network, consisted largely of volunteers who were helping people with AIDS and most of its helpers were men from within the gay community.
CSN sent us Tim Rigg, a charming nurse who was himself HIV positive and must have been in his early forties. He was to become a close personal friend of Damon and Celeste. Though he hadn’t as yet shown any outward symptoms of the virus, Tim was to prove an important connection. He was an experienced nurse who, finding himself to be HIV positive, switched to caring for AIDS patients. For the first time Damon could talk to someone who understood the disease and who had the emotional energy to explain it to him.
Tim was a realist. He didn’t believe in the possibility of a cure for AIDS. “We are going to die, Damon. It’s only a question of time,” he would say without melancholy in his quiet, matter-of-fact voice. Somehow Tim’s reconciled attitude bolstered Damon’s determination to live. “There’s always an exception, Tim. I’m going to be the exception, you’ll see.” In fact, Damon seemed as sure of his ultimate triumph as Tim was certain of his demise.
Based as it was on opposing points of view, it was a strange friendship, but somehow it worked and the gentle and wise Tim was to remain a part of Celeste and Damon’s lives to the very end. Celeste, in particular, came to regard him as a sort of uncle, an adult person who was able to explain Damon’s condition to her as it slowly began to take over his life and, with it, her own. Through Tim they came in contact with a cross-section of the gay community and quickly learned that gay is not a finite description, rather, a state of mind, and that within it people differ in character, personality and style as much as heterosexuals.
While this must seem obvious, it isn’t. Although homosexuals have lived among us for a thousand generations we still largely think of this sexual proclivity as a set of visible and behavioural characteristics which are manifestly different from our own, as different for instance as a zebra is from a donkey. Somehow heterosexuals don’t see gay people simply as accountants and lawyers, doctors, shopkeepers, garbage collectors, van drivers in our society. Gay is not regarded, as it should be, as a description of sexual proclivity, but is seen instead as a special breed of humankind. Our shame is that we try to make homosexuality into something it isn’t, to turn our brothers and sisters into strangers and weirdos to be vilified by a far from straight, heterosexual community.
The two things society doesn’t want to talk about are sexuality and dying and with AIDS we have both, so that the tendency is to ignore the disease or to ascribe it to someone who is different from yourself or your sons and daughters.
* * *
The Salmonella infection had caused massive damage to Damon’s good knee and elbow and allowed his arthritis to attack both joints severely, causing irreversible damage. Suddenly his daily pain load got a lot worse. Now he was seldom, if ever, free of pain and som
e form of drug became essential, not just daily but several times during each day. The four-hour medication cycle had begun.
Constipation caused by mostly codeine-based drugs was a constant problem and this was followed by bouts of severe diarrhoea when he was forced to take an equally strong laxative. The cycle from severe constipation to acute diarrhoea was taxing his strength and inhibiting his recovery, which was slower than he’d expected it to be. We wanted him to stay home with us until he was strong enough to manage safely on his own. But he greatly missed being with Celeste, and she him, and both were determined to get together at the earliest possible time.
This came about sooner than Benita and I had hoped when Xavier, the proprietor of Dinky Di Pies, won a place in the finals of a national meat pie competition conducted by a local radio station. The immediate demand created by the local pie freaks made him decide to expand his operation. In Australia, a reputation built around a meat pie is money in the bank! To do so Xavier needed the flat upstairs for storage and so Adam and Celeste were asked to move out.
After six weeks at home Damon felt he was well enough to live with Celeste again and the two weeks’ notice from Dinky Di Pies meant that Celeste was forced to look for a new place. They set about finding accommodation together even though Damon was still walking on crutches, a form of getting around so familiar that at school he’d practically been able to do acrobatics.
Damon spent most of the day on the telephone lining up real estate agents and properties in the eastern suburbs to look at and, after uni each day, Celeste and Damon would take Benita’s car and go looking at them. After living in Pyrmont and Glebe, Damon’s homing instinct reasserted itself and he wanted to come back to the eastern suburbs, back to the familiar places of his childhood.
It was the usual problem of money, though even more so. The areas nearer home were more expensive and what they were invariably shown was too little for too much. Finally, in late April 1988, just as the colder weather was beginning to carry a bite, they found a lovely little apartment in Vaucluse right on the cliff face, with all its windows looking directly past the elegant South Head lighthouse and out to sea.
Damon loved it immediately; moreover it was within their budget. This seemed like a miracle for it contained a large bedroom, a lounge, a second smaller bedroom, which could become a workroom for Celeste, a small dining alcove and a large glassed-in balcony. They’d seen dozens of flats with less room, a poorer outlook and at a much higher price; this one now seemed too good to be true.
Damon wanted to put a deposit on it immediately, afraid that such a bargain might escape, but Steve, their landlord-to-be, confessed to them that it had a major drawback. At night, at five-second intervals, every room in the flat would blaze momentarily with light and then flick back to darkness as the lighthouse beam struck the windows. He mournfully pointed out that the last tenant had lasted only two weeks. Celeste would later claim that this spasmodic, nocturnal illumination led to the most amazing psychedelic dreams and that, always, within these dreams she’d hear Damon saying, “It’s okay, we’ll take it, we’re not scared of the light.”
Notwithstanding the news of the lighting effect, as far as they were both concerned the flat’s only drawback was that it was one flight of stairs up from ground level. But Damon was sure he could manage the steps and, while climbing the stairs might prove to be hard work, the steps were fairly wide with a strong banister and he was certain he’d be able to negotiate them. In fact he was right, though sometimes this could be done slowly and painfully and even, on occasion, by pushing himself up backwards on his bottom, one step at a time. Being together again made up for everything and the effect of their few bits of familiar furniture around them and their posh double bed back in a bedroom of their own and in a lovely sunny flat did wonders for Damon’s spirits.
Celeste was working again part time at Dinky Di Pies. They soon had enough money to paint the walls and cover the worn linoleum with cheap cotton dhurries and generally fix it up to be a warm and welcoming home of their own with nobody else to share the space. It soon became apparent that Damon couldn’t walk more than a few feet at a time without having to stop and wait for the pain to pass. Both knees were now completely shot and he was forced on most days to use a cane. So as soon as he was strong enough to drive I gave him a second-hand, silver grey Mazda RX7 automatic. It was not quite a Ferrari but nevertheless a very sporty little Japanese car, which I’d bought from Alex Hamill, an old and trusted friend. I’d driven the car myself for a while, so knew it to be completely reliable and in immaculate condition. Perhaps I was more generous than many other parents can afford to be. But things don’t alleviate pain or prevent the process of dying and, in the end, it’s not the things but the love that counts. Love is everything whether you’re rich or poor; it is the emotional capital that counts most.
They now had a place of their own and a set of reliable wheels. Only one thing was missing and so Celeste made the trip down to our Vaucluse house (which still hadn’t been sold) and fetched Mr Schmoo.
On arrival, Mr Schmoo invited the landlord’s cat into the park for a couple of rounds of paw-boxing which he won easily, seemingly with one paw tied behind his back. And so Mr Schmoo took up his accustomed position as the cat who wore the top hat and spats at the lighthouse flats. The whole family was together again and things were definitely looking up.
For the remainder of 1988 all seemed to go well. Going well was probably a relative term with someone as chronically ill as Damon. It meant he was more or less in control of a life of some small quality, one which was not totally dictated by his illness but which, nevertheless, kept him in constant pain. And so Damon and Celeste spent Damon’s twenty-second year at the flat with the five-second special illumination effects and he regained much of his old enthusiasm for life. He set about his desktop publishing with a vengeance, determined once again to be the major provider.
Damon didn’t like to think of himself as ill or sick and never spoke in such terms. At best he would admit to being unwell and referred to his AIDS condition as “my thing” and to his arthritis condition as “it". A bleeding joint was simply called “a bleed". “It’s not good today” was his response when he had a lot of arthritic pain or, when he had a bad bleed, he’d dismiss this by saying, “It’s only a dumb bleed.”
While Tim Rigg had done quite a lot to educate us, Celeste and Damon still didn’t know a great deal about AIDS. In fact, in the less than five years the disease had been publicly around no one really seemed to know a great deal about it. We soon learned that a peculiar human aspect of this viral disease is that most of its victims seem not to want to know too much about it. One possible explanation is that AIDS is still largely a disease found in the homosexual community, which is, in a great many instances, a covert way of life. Often parents and relatives are unaware of the sexual proclivities of their loved ones and this leads to a hidden agenda. The gay community is, of necessity, well rehearsed in this double standard of behaviour which is often regarded as a primary condition of being a homosexual. Tim himself suffered at the hands of his own family, who found his homosexuality difficult to accept and, in fact, were not to know of his AIDS condition until near the end when it became physically obvious that he was terminally ill.
While the Gay Liberation movement has come a long way in its fight for acceptance by the general public, at the ordinary mum-and-dad level, things haven’t changed very much. It may be fine for someone else’s son to be gay, but quite unacceptable in one’s own child. So the attempt by gay men to live two separate lives, a straight one at home and a gay one beyond the garden gate, becomes impossible; they move away and are no longer seen by their families regularly. An occasional visit home isn’t too difficult.
But with the advent of AIDS came a new problem. AIDS is a terminal condition which inevitably exposes its host and forces him to confront distraught and often unprepared families with the news of his dying. The personal guilt is often enormous for some
one with AIDS who is close to a loving family. It seems to have had the curious effect of repressing the serious nature of the AIDS illness. Add to this the fact that most victims are normal young men with a healthy sense of immortality. The sudden knowledge that AIDS means certain death is an admission to be postponed as long as possible.
Doctors and nurses will tell you that fewer questions are asked by AIDS patients than by victims of almost any other disease. It is not that doctors won’t talk about AIDS, but only that there still isn’t a great body of understanding of the virus and there isn’t a long-established protocol for the disease. The lack of knowledge normally possessed by a community familiar with a disease for a long time, combined with the reluctance of HIV-infected people to talk becomes understandable.
While this is becoming less true as more people die of AIDS, the full range of first symptoms has taken some time to work out and may still not be fully documented. AIDS strikes in many different ways, simply because it disarms the body’s immune system rendering it totally vulnerable. This opens the doors to just about anything that happens to be about. As one doctor put it to us, “AIDS is a thousand different, often unexpected diseases, wrapped in one package.”
Damon though was different; because his HIV infection was medically acquired he had no experience of homosexual guilt and he wanted to know everything. Later, as his AIDS condition developed, he was to face prejudice from people who assumed he was a homosexual. This would sadden him greatly, not the thought of being wrongly identified, because I never heard him deny or defend himself, but rather because he discovered that the explicit judgments people made about him often affected the way they behaved towards him. Latent homophobia in the community was one of the reasons he wanted to write a book, to explain that AIDS was something which required compassion and understanding – not judgment, censure and condemnation.
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