Couch-based activism 101

You want to make the world a better place. The intractable difficulties and complications of reality are stacked against any chance you might succeed.

This is a quick introduction to strategies and tools for protest, sharing and action in the Internet age—most of which can be done sitting down.

Emailed protestsPackaged dildo

When thousands of outrage-laden emails start pouring into the inbox of the incompetent government minister, a simple filter redirects the electrons onto an information technology compost heap. If your protest must consist of sending someone something, put down the iPad and stick a stamp to an actual package, which you can then get someone else to mail for you.
When protesters wanted to have their say about anti-gay laws in Russia they sent Vladimir Putin dildos in the post. Does anyone know what he did with them? (—The dildos, I mean, not the protesters.)

FacebookFacebook icon

Judge your friends and acquaintances by how enthusiastically, often and mindlessly they click the ‘Like’ button underneath your posts.
The name ‘Facebook’ carries within it the judgmentalism of the software program that was its precursor, ‘Facemash’, a computer game that sorted Harvard women into ‘Hot or Not’. Users turn Facebook into whichever kind of game is most important to themselves: like me or don’t like me; approve or disapprove; with or against me; agree or disagree; and so on.
The non-threatening and non-judgemental uses of Facebook—keeping in touch with friends and family, arranging invitations to parties, etc.—are the outer and upper circles of a deep, cold hell where people can easily convince themselves that ‘sharing’ a news item is actually sharing.

Twitter Twitter_logo_blue

… Apparently able to tear down corrupt governments with a single tweet retweeted until your despised oppressors simply pack it in. The 140-character messages on your fancy phone are powerless unless someone—a million someones—actually decides to turn up. Turning up is what topples governments; turning up in sufficient numbers and refusing to leave until something happens.

OccupiersOccupy_Wall_Street,_Unofficial_Logo

… Which leads me to occupiers, not strictly part of the couch-based activism movement.
You’ve got to love the commitment and outrage of the occupiers of the Occupy movement but, the moment the news starts showing them sitting in a circle, on cushions, and passing the talking-stick, you know something has gone wrong.

Poetry

No. (Yes, it can be done sitting down but, as a strategy for social change, it doesn’t work.)

SatirePutin made up

You can do this lying down or standing up. It is difficult to do well but it can be effective. Modern trends seem to favor non-verbal, graphical forms of mockery (except ‘street theatre’, which is now only acceptable at Earthcore events).

Unions with Facebook accounts

Without doubt the most accurate sign your union has abandoned hope that your job and conditions can be protected is the appearance of the union’s Facebook page. Not as concrete as a poster or letter, not as personal as an email, not as rousing (or as dangerous) as a good old-fashioned meeting or speech, the union Facebook account turns all news, good and bad, into ‘timelines’ of blue-hued inevitability. The union organisers who post news to Facebook are most likely at home on the couch right now with a bowl of popcorn.
Unions should own more megaphones than smartphones.

YouTube YouTube-logo-full_color

Meat including Pork (73%), Water, Premix [Potato Starch, Tapioca Starch, Salt, Modified Starch (1442), Soy Protein, Mineral Salts (451, 341, 450, 452), Dextrose, Spices, Antioxidant (316), Sodium Nitrite (250), Fermented Red Rice], Food Acid (325), Sucrose, Smoke Flavors, Vegetable Gum (412), Anticaking Agent (551) … YouTube is the manufactured meat product of the Internet.
While it is one of the great, supine protest activities, YouTube’s effectiveness is greatly enhanced when done outdoors and in the kinds of places where human rights are being abused, decency trampled on, and innocents being shot. No editing or music is required. Just set your camera-phone to upload videos automatically and start recording.

Woolf, el-Sisi, Abbott and boy bands

Trying to imagine what she calls ‟that anonymous monster the Man in the Street,” Virginia Woolf visualised ‟a vast, featureless, almost shapeless jelly of human stuff … occasionally wobbling this way or that as some instinct of hate, revenge, or admiration bubbles up beneath it.” The argument about whether such views make Woolf a bad person has been raging for a long while, and assume that we know what she meant by the remarks at all. I thought about them again when I saw Australian prime minister Tony Abbott shaking hands with Abdel Fattah el-Sisi, recently elected president of Egypt.

Abbott excuses el-Sisi. “President el-Sisi is a reluctant jailer here. He wasn’t the president when Peter Greste and his colleagues were arrested,” Mr Abbott told ABC Radio. Abbott and el-Sisi know, I think, how Woolf’s shapeless jelly can be made to wobble with just a little push; and how little the jelly knows about who or what is doing the pushing.

PM Tony Abbott and Egyptian President Abdel Fattah el-Sisi.
PM Tony Abbott and Egyptian President Abdel Fattah el-Sisi.

Many in Australia think that the current government is trading in distractions when burqas push war, privacy, performance and promises off the front pages of papers. [As it turns out, the plan to put burqas behind glass partitions in parliament was not an intentional distraction, but rather the panicked response to a rumor that the parliament was about to be disrupted by a posse of burqa-clad protesters.] El-Sisi has been accused of the same thing. An economic mess, power failures, rising taxes, and a government’s desire not to be seen as the morally soft option, all add up to a social climate in which minorities are easily scapegoated.

Whether by design or chance, Egypt is in the grip of an anti-gay hysteria. This hysteria now has a catchy anthem and a video.

A boy band, imaginatively called ‘Boy Band’, sings its confusion caused by ‟soft men” who wear tight jeans. The lyrics of its anti-gay song use words that pun on the Arabic equivalent of ‘faggots’ (see note, below). Three men burst into a room. They have their serious faces on. They begin to rifle through the belongings of a person, presumably the man in the photo on the wall. The video looks like a police raid set to music. (فمن مداهمة قامت بها الشرطة مع الموسيقى.)

[This video has been made private on YouTube after being published for some time. It is not clear why. There is a copy of it here ➔ http://goo.gl/9SMZCl.]

In Australia we are worried about burqas. In Egypt they are worried about tight red jeans. I notice now that both Abbott and el-Sisi are wearing dark suits and blue ties.


Egypt: Eight men sentenced to three years in prison for ‘gay wedding’ video

Written by Chris Johnston and published in The Guardian on 2 November 2014:

A court in Egypt has sentenced eight men to three years in prison for appearing in a video that purported to show a gay wedding.

The video, which became an online hit after it was posted on YouTube in September, shows two men kissing, exchanging rings and embracing among cheering friends.

It was filmed at a birthday party held on a boat on the Nile.

The sentences, which can be appealed, were met with uproar from the families of the defendants, who demonstrated outside the court in central Cairo and were dispersed by police.

The defendants, who had denied the charges, stood silent in the courtroom cage as the verdict was read, one of them holding up a copy of the Qur’an.

The eight were arrested in September when Egypt’s chief prosecutor decided that the video was “shameful to God” and “offensive to public morals”.

At the last hearing, on 11 October, a spokesman for the justice ministry’s forensics department insisted the men were innocent.

“The entire case is made up and lacks basis. The police did not arrest them red-handed and the video does not prove anything,” Hesham Abdel Hamed said.

“The medical test showed that the eight defendants have not practised homosexuality recently or in the past.”

He was referring to anal examinations, a long-standing practice in Egypt that Human Rights Watch has condemned.

The New-York-based lobby group had called for the men be released.

Homosexuality is not illegal in Egypt, but it is a social taboo, and allegedly gay men have often been arrested on charges of immorality.

In the most notorious example, 52 men were arrested in 2001 for their perceived sexuality, in what became known as the Queen Boat case.

In April, four men were convicted and sentenced to eight years in prison for “debauchery” after allegedly holding gay sex parties where women’s clothing and makeup were found.

Human Rights Watch said in September that Egyptian authorities had repeatedly arrested and tortured men suspected of having gay sex.

Saturday’s sentences are the latest in a crackdown by authorities against gay people and atheists.

The campaign also targets liberal and pro-democracy activists and anyone who breaks a draconian law on street protests.

Note: The lyrics use the word “khawagat” in a pun linked to the term ‘khawalat’ (a plural noun), the equivalent of ‘faggots’ in English. In traditional Arabic ‘Khawal‘ is a man who has been taught and performs belly-dancing routines. In modern Egyptian slang it is an attack on a man’s sexual identity.

The black king

The house has been quiet for more than a year. Parties, not wild but happy, used to distract the whole block, and several of the neighbors did not shy from joining in a celebration they knew nothing about or did not quite understand. The man in this house was an open neighbor. He did not have a history, nor did he seem to create any that could be seen from the street. Amiable and talkative when he stopped at a fence to say hello, and often seen carrying a face that was all smile, he was to some people eminently approachable, and to others plainly weird.

But women liked him. They liked him perhaps because he was conscious of not letting his eyes drop to their breasts and hips, or perhaps because, when he spoke, ordinary words would reveal an emotion.

The house was different. Unchanging. Weather and years had no effect on it. So, when he disappeared inside it, he was no longer a neighbor but a secret.

I don’t want to imply that the house was severe or gloomy. It was nothing like that. When he arrived, I think it was eight years ago, he stripped the ugly paint off it, planted evergreens front and back, and put startling pink azaleas in pots under the sills of the front window. On tables beside windows which faced the other street-the house is at a corner-he grew obconicas mainly, friendly flowers that I don’t like because when they are perfect they look artificial. From either street it was possible to see the rooms. They were sparsely furnished but painted in warm colors, and each of them differently. The picture of the house had been completed eight years ago and it never changed. A house should be a process, accumulating life. Parts of the garden should die, others flourish. Paintings, photos, tables and chairs, should move. Neglect should inspire unfitness of its looks, at least occasionally. And then, probably, there should be more than visitors. A family should scar it, graze the skin. A little mending and changing is good for a house. In this house, though, there was none of that. The house seemed inconsistent with the man. It had the rigidity of a silence intended to end argument and change. A picture of stability which could be happiness.

Through most of this time I never spoke to him. That was not willful. The opportunity never arose; though it could also be said I never made one. When we first met I was one of the team whose work would be to care for him during the last few months of his life.

“I’ve seen you”, he said and eyebrows lifted to form an irony.

“Yes, I live close by.”

“It must be strange. Is it allowed?”

“We talked it over. I don’t think there will be any problems.”

“If I’d known I could have invited you up for a meal”, he said, in that manner that was to become familiar, talking as though there were no more chances to do or to plan. For a moment I stumbled on the thought of objecting vigorously.

“You still can.”

He laughed, surprised to find he talked about himself in the past tense. “Yes, of course, though you may have to cook if I feel like shit.”

“I’m not that bad a cook, really. You may be disappointed.”

In the first half of the last year the house was noticeably closed. Window shutters locked a month at a stretch, the canary yellow car disappeared, and the grass, what small area of it there is, grew too long. He was in hospital while the burglars moved in.

I am told that when he was in hospital he was a different man completely. The place reminded him of his dependence on other people and the truth of his illness. Why would a perfectly able and competent person be in hospital? He hardened against the forms of help and incessant prodding and testing which are natural (or at least unavoidable) in hospitals, so that it seemed to the staff he was normally unfriendly, plaintive, and terse. They were glad to get rid of him when it was decided he could stay at home, or, rather, that there was nothing more that they could do for him.

In his house he could be difficult, too, but here at least there was time for him to explain what he wanted and didn’t want, and the team considered it part of its work to make these adjustments—within reason.

With some people the problem is an excessive willingness to be helped; these people want servants who will turn dying into a style of luxury. —That’s what I’m told.

In the first weeks he would allow us little more than to drive him to appointments with his doctors, for tests at the hospital, or to visit relatives. He was uncomfortable driving when he discovered his vision could suddenly blur. For a long while he relied on friends, those who were not afraid to visit or, rather, to wait through the long silences or bouts of crying that could erupt at almost any moment. If it was not plain fear that kept some away, the uncertainty of dealing with certain death restrained the rest from visiting. It was to provide relief for those people who had helped most that we were here.

Elizabeth was the first of us to notice his passion for chess. Among the books in his library was a section devoted to the game, and in the living room an old cabinet contained at least a dozen sets of men and boards.

“Everyone says that. Without fail, it is always the first thing you hear.”

“No, really, I think I know the rules, but I’m sure I’m no good at it”, Liz replied. “I like board games, though.”

“I like them less now.”

“What do you mean?”

“For some reason people always advise a new opponent they are really no good at the game”, he said, setting up the black pieces on his side of the board. “They think of it as an intellectual game. The mind goes on the line.”

“No reason for you to worry, if you’re good at it.”

“I suppose not”, he said with some anger.

“Well, we can just play. You don’t have to talk about it”, Liz said.

In the middle-game he started to talk again, looking at the board. “If I castle, plant a knight in front of this position, and play safely, the defence works itself out. I wouldn’t need to force a win. Draws can be very satisfying. It’s not at all like life; there’s too much art in it.”

“Competitive, too”, Liz offered, struggling with his cryptic messages.

“With you, unfair competition.”

“I’m easy!”

“All of you together, it’s unfair.”

We learned not to be so rigid in our scheduling and we let him arrange us around him, realising that eagerness to help could destroy the will. It was unfair.

But this, like everything in the last few months, also changed. At first, he wouldn’t allow us to do the laundry. He persisted with this ban longer than anything else, for reasons that must have been quite irrational because he didn’t mind at all that we did the ironing. In the meantime, we restored the house when he wasn’t looking, repaired the garden, and potted plants. The picture of the house got better as he deteriorated.

He never forgot about the washing completely. His body would not allow him to forget. During long periods of diarrhoea he lost weight into his bedclothes and trousers; and when the problem wasn’t diarrhoea he would be throwing up every meal. We became adept with buckets and towels. That was easy enough. It was much harder to cope with his embarrassment and sense of degradation. When he felt this most acutely it wasn’t strange he wouldn’t talk to us, answering with shrugs, grimaces, and nods, instead of words. Moods fluctuated with his body, though, and when he felt better, he talked more.

Twice he asked to speak to meetings of volunteers and it was during these meetings we heard what he thought about us.

“I hate every one of the people, every one of those volunteers who come into my house”, he said. “I hate seeing my clothes neatly pressed. I hate having the bed made for me. I hate hearing questions like ‘Would you like a cup of tea?’ ‘Do you think you will be able to have some dinner tonight?’ ‘Would you like to see your mother tomorrow?’ So I swear and curse. I think that if I hate everything that is happening to me enough, if I am angry enough, it will all go away. Stupid. What’s amazing is that these people decide they are not going to give up on me. Anger makes me feel better. It keeps me going.”

At the start of summer his mother arranged a birthday party, gathering all the reluctant, complaining family at the house. She wanted us to be there, too.

It seemed to me the more light came into the house the worse he looked, the easier it was to see those purple blotches which had appeared on his face.  —No, not really the light. It was seeing more of his family made me realise how divisive and frightening illness could be. Mother watched everyone keenly, afraid that at any moment someone would let a taboo word loose like a bullet in the air. Sister hugged him too quickly, and careful not to let her lips touch his face. Elder brother’s wife and child had conveniently found other duties with a mother-in-law. All this healthy prejudice and fear made him look ill.

I winced with embarrassment whenever someone took up their duty to make conversation.

His cousin, Tom, arrived like a change of weather, strode into the living room with a large, brown-papered parcel, and larger smile, planted himself on the sofa, and kissed the thin, sick man on the lips-leaving some of his smile there.

“Sorry about the paper.”

“Oh, god, not another one.”

“Who did you say was the chess player?”

“John. Over there”, he said, looking at me.

“Good. I’ll beat him first then.”

“Not if I have anything to do with it”, I said, accepting the challenge.

The brown paper tore open, revealing a new chess board and heavy, wood box.

“That’s the last thing he needs”, the elder brother moaned.

“Yeah, I know, aren’t they wonderful?” Tom replied, opening the box and taking out two of the pieces. “Come on, we’ll set them up on the table in there.”

Tom and I played chess, on the table with the obconicas. Brothers and sister talked, I thought too eagerly, with Liz and Mary, the two women on the team. Perhaps they thought if the conversation with the women lapsed they would have to speak with the men. With the women they could simply be grateful, but the men were another matter. They would have to ask, “Why are you doing this?” or “What are you really doing this for?” Tom, though, felt no need to avoid any of us.

“He told me you live near here.”

“Yep. Just down the street a bit.”

“You didn’t know him before?”

“No. We’d never met.”

“Well, he likes you. I mean he likes you more than the others. Not that he isn’t grateful to all of you, but he likes you the most.”

“I don’t understand that at all.”

“He says you say what you think and you wouldn’t let him win at this”, Tom said, nodding at the board.

“I don’t beat him anyway.”

“You will, though… You know he uses the game to keep watch on himself.”

“No?”

“He doesn’t care about the Kaposi’s and the rest of it. Well, that’s not right: he does care. He just doesn’t want to go off his head as well. He couldn’t stand that. He’s afraid he won’t be able to think.”

“Oh, I see.”

“He’s got a nickname for you.”

“Does he?”

“Yeh.”

“Are you going to tell me?”

“Guess.”

“I’ve no idea.”

“The black king. That’s what he calls you. Silly, isn’t it?”

“I hope so.”

“Well, you’re not doing too well today. I’m going to win, I think.”

“It does look bad for me.”

“So why are you doing this?”

“Helping, here?” I asked, to make sure I would answer the right question.

“Of course.”

“Lots of reasons. Just to help, for a start. Then, so he will know he’s not alone, I suppose.”

“What about you, though? What do you get out of it? And if you say ‘satisfaction’ I’ll hit you.”

“No … To tell the truth I don’t know yet.”

From its first days everyone thought that summer would be particularly hot and mulled over hot synonyms like an incantation. Scorch, blaze, and the rest.

A week after the birthday party another heat began. Mary telephoned one morning and waited at the gate for me as I ran down the street. We may have committed some indiscretion, or maybe one of the family had trusted a neighbor. It was just as likely that gossip and guessing had, for once, converged on the truth and spread like fire to the surrounding houses. On the footpath a great slash of red paint spilt from a can underlined the four letters of my neighbor’s new name, written with a thick, bold brush. I was astonished and Mary was crying. “That’s not all”, she said.

“What else!? What else could the bastards do?”

She took one hand from her face to point at the letterbox which was filthy with excreta.

“Does he know?”

“He can see from the window, John.”

“Please, you go inside, Mary. I’ll get rid of this.”

For a moment I thought of cleaning it, but really I wanted to kill, and might have except there was no one to lay my hands on. I settled for a sledgehammer, taking a swing at the box to knock it off the fence in one blow. There was nothing to do about the paint. Hosing down turned the red slash into a red blur, but the word was already dry and could not be moved. It stood screaming on the footpath for days and was never removed entirely.

There were more important things to worry about. Our friend joked about the shit. “You know, you are too quick to condemn my neighbors. It could have been a very agile dog, or that big cat a couple of doors down.” Or he joked about my sledgehammer. “I’m lucky I still have a house the way you people behave!” I think it was resignation that released this humor on us, turning everything terrible into laughter. Weeks of humid, breathless heat, which I enjoyed, suffocated him. “It’s all right”, he said, “this heat now and no hell later will suit me fine.” He flatly refused to return to hospital. No one there would understand his new jokes.

He died the night of the promised change, just to show that life really can imitate the weather. Tom tells me that Liz made all the calls when it was clear he would not last. Tom knocked on my door and said I’d better come. He didn’t need to say why. I knew it would be like that.

Large, cool drops of rain crashed on my glasses and shirt as we ran down the street. The house, which had been sealed tight against the heat all day, was uncomfortably still and warm. As soon as he entered, Tom cried out, “Oh, for god’s sake, open the bloody windows!” It was dark, too, and I stood, sweating, in the shadows of the hall that led to the bedroom. Now, I thought, if only the doctor and nurse will not come. I wished for them not to come so there would be no more injections and orders, no more parody of medicine. I stood outside his door and wished he would die. Liz went from window to window, almost in a panic, as though opening them would save him. I hoped and wished and knew that nothing would.

“Richard, it’s me—Tom. Do you want anything? Johnno’s here. Do you want to see him?”

Tom put out his arm to call me into the room. It was Tom calling, though, not the man in the bed. Except that his ribs moved under the single, light sheet, he was dead already, and I doubt he could hear Tom spluttering about a game and that the black king was here.

I sat behind Tom on Richard’s bed. I put my arms around Tom’s arms and chest to stop his fidgeting and prodding. While he sobbed, I closed my eyes and wished again.

Then, while the house cooled, before the others came, there were no more questions, only answers.

Originally published in Outrage, September 1988, and then in Imaging AIDS, Artists Against AIDS Exhibition, 1989, and Fruit: An Anthology of Australian Gay Writing, edited by Gary Dunne, 1994

First and last words

Where words are scarce they are seldom spent in vain,
For they breathe truth that breathe their words in pain.—William Shakespeare, Richard II, 2.1.7-8

The first time I heard someone speak about AIDS Dennis Altman was warning the audience of a conference that AIDS would become a business, providing employment for professional educators, carers, commentators, researchers, opinionists and authors. At the same conference several people noted the absence of speakers directly affected by the virus.

Later, I spent a short time writing Question and Answer advertisements for the Victorian AIDS Council (Q: Is kissing safe? A: Yes. It’s as simple as that …). I signed, like everyone else, documents (loosely) binding me to an agreement of confidentiality. One night I spoke to a man, antibody-positive, who expressed the opinion the Council’s obsession with confidentiality was at least partly responsible for the crushing vacuum formed by not being able to hear the voices of people with AIDS He acknowledged the good intention of the Council policy to protect him but added the angry footnote, “I don’t want to be protected.” No doubt the policy also exists to keep safe from those who need no protection the ones who do.

The verbal litter of the media’s coverage of AIDS issues has been to some degree corrected by the sensible and compassionate commentary of Altman and a very few others. I waited for a while to hear how creative writers and artists would speak about AIDS, and heard nothing, or so near to nothing as makes no difference. I waited, also, to see in print the record of those personal experiences which only people with AIDS can tell and, again, found almost nothing. It is obvious confidentiality is not the only agent of the silence we are in. I cannot resist the temptation to tell a simple and ineluctable truth … There are too many creative writers. Quite a few of them are gay. Hardly any of these (I’m being very generous, I think) have bothered to write anything about AIDS. Therefore, gay Australian writers are, on the whole, a bunch of fucking wimps. I feel better having said it.

Ending my own intransigence by seeking to promote the publication of whatever people with AIDS had written I found more disturbing reasons for the stifling climate. Writing requires an effort of concentration and endurance which people with AIDS often find themselves unable to afford. During periods of illness, if there is no one who can be trusted to transcribe a tape recording or to assist with the physical trouble of placing words on a piece of paper, no strength of desire can overcome the fact of physical weakness. —And when the writing is done there is no guarantee it will be published. One journal, written by a man who died of AIDS in 1987, has so far failed to be published because—the editors said—it is not very well written, and too short to stand alone. This failure makes me rigid with anger: considerations of ‘Literature’ and ‘Art’ should prevent the publication of almost everything we read these days.

Do I really need to give reasons for you to read the excerpts from James’s journal which are reproduced here? Perhaps not, but bear with me a while so I can list the most important.

First, James wished to be heard. On 29 July 1987, when it appeared his journal may have been lost, James spoke into a tape recorder recounting the anguish of a person who had been violently gagged.

“I just cannot believe what’s happened! Yesterday Wendy looked for my journal but couldn’t find it. She left and Bob rang. He said it was in the drawer. It wasn’t there. In fact it was nowhere and still hasn’t been found today. Yesterday I panicked and felt around, the nurses searched everywhere, people were phoned. It just disappeared from my room.

“I just can’t believe this. I was so upset, I’d lost a part of myself, yet how? How could it just go? Who would take it? If someone came in, why would they take that? Wouldn’t they take my walkman? What if it got caught up in the linen? Where the hell is it? I felt bad enough before this; I was agitated, angry. I’d just been here so long, felt I couldn’t stand it, was upset. It was all getting to me: the hospital, drips, needles, tests, people in and out, noise-just too much! Then yesterday stretched it so far I’d thought I’d snap, even if they just wanted to take my temp. I didn’t think I could stand even that.”

Second, recording the ordinary facts of his own illness and death, James shows how unnecessary and wasteful ‘good writing’ is: lying requires an effort of will which the very ill are not likely to squander.

Third, I am showing only those parts of the journal which refer to James’s eyes so we can think, as we read, about how lucky we are; and to remind us that, by reading, we can silently agree James’s work was valuable and is not wasted on us.

May 24

My left eye is causing me some concern. Maybe I am worrying too much, as usual. It’s just that I’m scared it’s getting worse. I close my right eye, using only my left and it seems I can only see half of what I should see. I can see directly ahead but not below the centre or to the left side unless I move my eye right around and then I can still only see what I am looking at. So, if I look left I can’t see straight ahead. The same if I look right.

It is scary because it really does seem worse. And if it gets any worse than this it will really affect my day-to-day life. If unable to drive, I’d lose a lot of my independence. No—I just couldn’t stand it …

June 4

Bob told me some strange news yesterday. He said that a Scottish vet had found a vaccine that kills the AIDS virus in monkeys—that there was a vaccine against it, but they hadn’t tried it on humans. It hit me very hard. Imagine the impact that news like that would have on me. And to make matters worse, we didn’t know any more than that. Could it ever be used on humans? Did it just prevent you from getting AIDS or could it be used on people who already have AIDS? There were no details, other than it worked on monkeys. And monkeys being so similar to man, it created a real possibility of hope.

My head spun with a hundred questions and no answers. Emotionally, I was stuck in limbo. I felt like crying, laughing, yelling, but I couldn’t. Because I didn’t know enough to know how to feel. We didn’t know for sure. But there was hope, a new hope!

Bob heard it on the news, so we thought that more information would be gained on the news that night. I looked at all the evening news shows and there was nothing! Not one mention! I couldn’t understand it. We both couldn’t. By then I was OK and wasn’t really thinking too much about it. I was thrown into such a state that my brain switched off to stop the torment of all these questions without answers.

And my left eye is getting worse. When I use only the left one, the lower right corner is distorted. So if I look at the TV with the left eye, the bottom corner bends upwards. And I’ve had double vision, too. Before I could just hope it would get better. Now it’s painfully obvious that it won’t. But still I don’t think about it if I can help it, which is almost impossible because I use my eyes all the time. I can’t think of ifs and buts and what-ifs, because I don’t really know what’s going on. I only know I see less: this flat, all of a sudden, seems so much darker, and I can’t drive at night and even walking outside at night is very difficult. I could have cried a few times this week, but it just didn’t come out …

June 12

But the hardest part of it is that I am finding it more difficult to do things and if it gets worse then things become even harder. I lose so much independence, constantly in need of help. What about reading and writing? And driving and going where I want to go when I want to go?…

I try too much not to walk into things, so what happens? I walk into things. So I got out of there as quickly as possible and came home …

June 16

Things haven’t improved in the last few days. In fact things have become much worse. Even writing this is most difficult. My eyes have deteriorated in the past week and even more in the past two days. I’ve also not been feeling very well for most of the past ten days or so, although today I feel good again physically …

Since Sunday my right eye has become fuzzy, making it very hard to read, write and drive …

Today I was wiping the bench and I double checked that it was clear of anything. I moved my arm across and knocked a glass across the room. I even made sure to check. The glass was right under my nose and I couldn’t see it. I can’t see anything down there. Anyone would have seen it. It’s been a pretty lousy few days …

June 25

When they went bad all of a sudden, over just a couple of days, it really scared me. I just hoped and hoped that it wouldn’t keep going the way it was. I guess I could say it’s been the worst few weeks I can remember …

I was convinced I had to feel bad about my eyesight, I mean angry and I should cry and throw things a lot. But now I see where I was going wrong. I wasn’t following how I felt. I was reacting in a way I thought I should, how I’d be expected to react in other people’s eyes.

So I guess Bob was right. The decision not to drive was the acceptance by me of the condition of my eyes …

July 3

I saw my doctor who suggested a new drug I could try if I wanted to. The only thing is it may do nothing. It may improve my eyes and it might have side effects. I said, “Yes, of course, I’ll try it.” I felt I had to try …

And the theatre was so dark! I just had to go very slowly and hang on to Bob. I’ve not had to hold on to someone before and that was hard to cope with too …

I was admitted into hospital for the new drug Phoscarnate.1 It is a new drug from Sweden, with no guarantees, but it could improve my eyes. There is a very small chance of some side effects. Hallucinations, anaemia, headache, epileptic fits, and a few I can’t remember, but really they were such rare occurrences, like 2 or 3 per cent.

When I arrived on the ward, no one knew exactly why I was there. Oh, but I did of course! Someone said was my DHPG2 ready? And I had to tell them, “No, I don’t have that any more.” They said I should go to my room and settle in and all will be sorted out. I asked the nurse who took me, “Why am I here?” She said the doctor probably wanted to keep an eye on the cough I’d been telling them about for six weeks. I said, two weeks is a long time for a check up, that I was here for a new drug to try on my eyes. Oh, says she, I’ll go and check. Nurse returns: Yes, you are here for that. Patient, who knows nothing, says: Yes, I had already told you all that! I knew why I was there, no one else did and when I tell them they check, come back and tell me why I’m here. But I’m the patient and they are probably embarrassed because they didn’t know. Oh yeh, they’d also lost my file. Probably why no one knew what the hell was going on. It was all a bit of a joke, really.

The drug didn’t arrive on Monday. They said Tuesday, but Tuesday comes and the drug didn’t. They now say Wednesday! I am handling being in hospital, it is a nice rest, I eat well when I can (I’ve seen the dietician about eating only what I want) and it’s warm. But I was getting agitated about being there for no apparent reason. But as always there was a reason for me, I thought, and the reason for this also caused me more worry and agitation.

Thursday—no drug.

It’s Friday, here I am and so is the drug. I am apprehensive, hopeful, determined, a bit unsure of its effects, all sorts of feelings. They want me now, to plug it in!

July 16

Today they told me the heart problem was probably due to the same CMV in my eyes. I seem to get worse: like 39° temps, not being able to eat, vomiting.

I was on the Phoscarnate for one week, and they took me off because it was affecting my renal functions and they’ve put me back on the DHPG with a much higher dose. What’s going to happen in the next few weeks? Well, nobody knows. The only good thing that came out of it was that I might be home in a week.

July 20

Lunch was lovely but the whole experience wasn’t easy. Last time I was in that restaurant, I could see the beautiful room. This time I couldn’t see any of it, and Bob had to cut my food. I’ll have to adjust.

I did something so stupid, walking from the cinema to the restaurant. I put in more of a limp than I already had, because I was holding on to Bob and I didn’t want people to think we were ‘together.’ Afraid of comments!! I felt a right idiot afterwards, when I thought about it. People that I couldn’t see and never would again, who cares about them? I shouldn’t, but today, well, I just got silly for a while …

July 21

The eye specialist came and said the number of white spots in my eyes had decreased. Good news for once. But he was concerned about my central vision: that the white area could spread to the centre, even though the number of spots is decreasing. That danger has always been there anyway. They just will NOT grow there, they just CANNOT and I’m bloody determined they won’t. The main thing was that they decreased—so why should they grow any more? They will not! They will GO! He left his report, the doctors are keeping me on medication. It seems obvious to me, seeing as it’s helping …

August 18

I guess I couldn’t be bothered, I wasn’t interested and I just can’t write any more. That’s why it’s on tape and Wendy is copying it into the journal, which I guess is basically the same thing. I’m not writing it, but they’re still my thoughts and words …

August 10

(By this time James was using a tape-machine to record his thoughts. The tapes were later transcribed to the journal by Bob and Wendy. In these tape recordings James often recalls the events of previous weeks, explaining the confusion of chronology in these entries.)

But yeh, I guess I’ve got something to complain about: who wouldn’t get angry, depressed, complain if their eyesight were just slowly going and if their life-span wasn’t expected to be long?

August 12

I was talking to my doctor, the day before, and I was telling her that I was thinking of getting a white stick, so if I was ever walking through the streets with someone and I bumped into someone, they would know that it’s because I can’t see very well. Maybe I wouldn’t get abused and if I had the stick people would move away and let me through. I’d have someone with me, of course, I couldn’t do it by myself.

She said that was a good idea and later that day the physiotherapist comes in and gives me a walking stick! I was quite annoyed really, that they just told this girl, “Give him that”, and hadn’t bothered to talk to me about it. I was just a patient. So then I thought, what the hell … If nothing else it might be a nice prop. But that’s just it. I was talking to my doctor about a white cane and somehow or other it ended up being a walking stick.

August 14

I believe my eyes are getting worse, I don’t think it’s working so why have the drug. It seems harder sometimes, to have my eyes deteriorating than it would be if I just couldn’t see. I would just have to get used to it, then and there and get on with it! But then I can see things close to me, like an ashtray, cigarettes or a cup: if I look around on the coffee table, I can find them. I should be grateful that I can still do those things and see. But I’m so fed up and angry, I’ve been so depressed. It’s no wonder I want to forget the drug, forget the hospital …

August 22

I think it’s going to be OK. I think everything is just going to be OK. I feel good and I feel less weight on my shoulders. I feel better within myself. It’s going to be OK!

At this point the tape-machine James was using jammed.

It is, I think, wrong to assume James’s last, hopeful remarks are an hallucination. Having, in the end, more conviction than most in the truth of his unusual spiritual beliefs, he refers to the future of his soul, not his body.

Wendy said of James’s last month that “Slowly, he retreated into his inner world and conversation with others became more limited. However, he would still assure us that he knew what was happening, even when he seemed to be asleep.”

A few days before his death, having already survived several weeks longer than some people expected he would, James appeared one night in Wendy’s dreaming. He was healthy, beautiful, and clear—the picture of his former and future self. In the dream they worked together in a field planting onions.

James died in his sleep on the evening of 18 September 1987.

1989


[Information about the David Williams Fund, where contributions can be made to assist people living with HIV.]

  1. Foscarnet. 
  2. A cytotoxic drug administered by drip. 

Uncle stranger

They fuck you up, your mum and dad.
They may not mean to, but they do.
They fill you with the faults they had
And add some extra, just for you.

—Philip Larkin


[Information about the David Williams Fund, where contributions can be made to assist people living with HIV.]

• This story belongs to another writer, a man who kept a computer record of many months he spent on the 'care team' that provided support services to a man with AIDS. The original document is about 30,000 words in length. It is partly a straightforward diary, but several of the long entries are in fact letters written to another person, also a member of the care team, who wished to remain informed of the team's efforts after he left to work overseas.
• This story belongs to another writer, a man who kept, in the late 1980s, a computer record of many months he spent on the ‘care team’ that provided support services to a man with AIDS. The original document is about 30,000 words in length. It is partly a straightforward diary, but several of the long entries are in fact letters written to another person, also a member of the care team, who wished to remain informed of the team’s efforts after he left to work overseas.

P enters the room. She’s a big woman, a bit fat, and she dresses like a tart. She married young, probably because that is what young people with no education and no future tend to do. Her parents didn’t do good by her, and she is not going to do any better for her kids. At least that’s the way it looks like turning out.

She has two kids, and her husband has AIDS. The husband is in the next room, gasping for air, coughing up blood. He will die soon enough, and she will still have two kids to take care of. Naturally she’s very pissed off, and very scared.

The husband got infected by the virus that causes AIDS when he was fucked by a man in a sauna. He liked having sex with men and women, but will only admit to liking sex with women. The men who fucked him were faggots, worthless. He’s a married man, after all, quite normal, and not one of them. Married men are not supposed to get AIDS. That is what is happening. Naturally he’s very pissed off about this, and he’s very scared. He knows he is going to die. Though he has heard there are people who are ‘living with AIDS’, it feels like he is dying.

P enters the room. The place is a mess, though it’s not quite as bad inside as it is outside. (Someone has been pissing in the elevator.) Eve was just showing me a book that Douglas left for her to read. Eve looks up at her mother and knows that it is all going to start again. I feel like I should be able to explain to her what is really happening. “Your mother is angry and has to blame someone. I will be here for you.” But I am not sure I will be here for her; not always, anyway. —Next week, certainly. For a while yet. But not always.

There she is, though, coming in again to give Eve another serve. Bitch.
“You little bitch! You fucking little bitch! Didn’t I tell you to clean up your stuff out of here? Can’t you help me at all? What are you trying to do? Kill your father!?”

When I go home I can put on a record, anything by Mozart, and life comes back into balance. In the Commission flats little Eve is still in hell.

Dear Morris,

I don’t really want to make you feel guilty about having to leave the team as soon as it was established-these things happen-but we are already feeling the strain of not having a co-ordinator who can co-ordinate us. The team they put together for M is already breaking up. At the area meeting tonight [Support services of the AIDS Council are divided into geographical ‘area groups’ relative to the city—North, South and so on. Larger groups are subdivided again, to make meetings and organisation manageable.] several new people who had just finished basic training were told they would be needed to stand in. M’s wife is very choosy. No gays, she says, which makes it a bit difficult. Who can remember everything they’ve done with their dick in the last five years? Does just thinking about something bent count? Lord, she is hard. She hasn’t got her way completely. Two of the team are gay, and four straight. 

Another briefing and discussion on Saturday. M’s wife is very strong-willed and wants to be in control of everything. Fair enough, perhaps. Her house. Her family. Her husband! It is not her death, however, and I am concerned about her always being between the team and M. The new co-ordinator, Henry, tells us we’re not to become emotionally involved. OK. Heard that advice before. M is not the average client. He’s married, for starters. Two children. They live in a Carlton Housing Commission place. His eyesight is poor, and this may get worse, of course. Oh, lord, and there is lots else to worry about. I cannot believe some of the things that are happening in that place.

The kids are in a real mess. I cannot believe how little support they are getting. I haven’t quite sorted out what can be done about it.

Though relations with P’s mother and sisters seem mostly normal, I’m told that M’s mother, who tried to extract a promise never to tell anyone of M’s true condition—a promise quickly broken because no one believed it was leukemia anyway—rarely contacts him, and I suppose that there is some conflict there. I gather she has feelings of guilt about M’s sight impairment, an odd thing to feel guilty about since it wasn’t her fault. She didn’t like him wearing his thick glasses any more than he likes wearing them. They only get in the way of showing his handsome face. (Actually, it is rather comical to think of M in a sauna, with or without his glasses, totally helpless, not knowing what he was grabbing on to!) Is M’s father better or worse, learning of the diagnosis and packing his bags, without saying anything, and going bush? He has visited his son once, a big step no doubt, but I know nothing about what happened when they were together.

M has two brothers, one an alcoholic in a de facto relationship, and the other openly gay and in no relationship at all (as far as the family knows). Yes, that means it is a family with every known kind—straight, bi, and gay. M is candidly admiring of his gay brother, which only makes the hostility to his own one-night stands even less comprehensible.

Deirdre has been off really ill with flu. Douglas has been stricken with it, too, along with half of his Army Reserve mates. Fairfield (as well as other hospitals) is filling up quickly with victims. Consequently there have been problems providing people for the roster, and I was feeling guilty about being on leave for a week. But P is down with flu, as well, apparently not too badly, and she is at home, so I feel all right about taking my time off. She can call if she wants anything, and I know she will. M has spent the last few days in Ward 4 being pumped full of Bactrim, and this seems to have warded off his fourth attack of pneumocystis, but I don’t think he is going to survive this winter. The decline is becoming obvious. He has lost several kilos in the last three weeks and has decided to cease all medication. It can’t be long now. At least, I hope it won’t be long. I don’t feel guilty about saying that any more …

Love,
Jim

P telephones Deirdre to ask if she will go out with her to the pub in Rathdowne Street. Deirdre hasn’t the heart to say no, though she loathes the place. P telephones Deirdre to ask if she will take her and Eve to the market Saturday mornings or to other places for shopping on Friday nights. P telephones Deirdre just to talk, for an hour or more, at least weekly. Same with me. I’ll get a call late at night asking me to come over. It’s an hour-long return trip for me. I am expected to be present when M’s brother is told the truth about the illness. I don’t know whether to think this is fair or not: since my brother died of AIDS, and they know this, I suppose they felt it would be easier with me around. I am counsellor and surrogate father as well as home help. The next day I take Eve to the dentist and then to school. The next day I am several hours with M after his father had rung to interrogate him about his sexual preferences.

• Discussions long after these events led members of this care team to draw up a list of recommendations, the first of which was that there should always be a contract drawn up between the AIDS Council and the client (or client group-all those significant others attached to the client and with whom the team may have to relate in the care situation). This contract should be drawn up at initial assessment and should be based on assessment of the client's and client group's needs and a realistic appraisal of how many of those needs can be met by the care team. The contract would also serve to protect the team from demands they could not anticipate.
• Discussions long after these events led members of this care team to draw up a list of recommendations, the first of which was that there should always be a contract drawn up between the AIDS Council and the client (or client group-all those significant others attached to the client and with whom the team may have to relate in the care situation). This contract should be drawn up at initial assessment and should be based on assessment of the client’s and client group’s needs and a realistic appraisal of how many of those needs can be met by the care team. The contract would also serve to protect the team from demands they could not anticipate.

Dear Morris,

… your holiday. Deirdre is desperately in need of one. Those of us remaining are all headed that way, but Deirdre especially because, as you know, she was involved with ‘Themselves’ (as we have come to call them) since long before the team was formed. Marg and Chris (I think they joined the team after you—did you meet them?) want to come, too, if only to escape M’s silences—it is really remarkable how little he reveals of himself, especially now, when you’d think that he would stand to lose nothing and gain everything from opening up a bit. It is really a kind of torture.

-For us. I’ve just had the thought that maybe he is coping a lot better than we are. Maybe he’s the only one who’s really got a handle on the situation? We’ll never know if we’re waiting for him to tell us.

Though Douglas has only visited Themselves a couple of afternoons, he, too, has started to become worried about the way P is treating the kids. I can’t sort that out now—I’m too tired. Deirdre and I are each spending about 20 hours a week with Themselves, and that’s plain bloody ridiculous. The area group leader says there is no one else available to lighten the load.
Thinking about joining you.

Love,
Jim

“Hello, Henry. This is Jim. How are you?”

“Well, thanks. Busy, of course. And you?”

“Got a few hours to spare? It would take that long.”

“I know it’s been hard. We’re all… we’re all that way now.”

“We could really do with an extra person on the team. A few have dropped out, you know—effectively dropped out. They’re just not turning up to do their bit.”

“I’m sorry, Jim, there isn’t anyone else at the moment, but I know your problems. Hold on for a while longer and we’ll see what we can do.”

“You know Adam has left the team, too, after his mother died. I don’t blame him for that. He wasn’t up to it any more.”

“Yes. I heard. It’s sad.”

“P is calling on Deirdre and me all the time for all sorts of things. The family is really up the creek.”

“P isn’t your client. You have to get that straight with her. M is your client, not the whole family.”

“Oh, come on Henry! You’ve got to be kidding. You know this is a special case…”

“Look, what do you expect me to do? You’re on the team. I’ve warned you before not to get involved emotionally. I’ve got seven teams to co-ordinate and they’ve all got problems.”

“You have not given us any such warning, and what sort of remark is that, anyway? How can we not get involved?”

“You’re not taking on the whole family!”

“How do we manage that?”

“I’ve been telling you since last November that…”

“November? I’ve been on the team since January twenty-eight. What’s this about November?”

“I’ve been telling you since … ”

• The AIDS Council does not restrict its support programme to gay men. Increasingly, support teams are needed for clients who are bisexual, or married, or intravenous drug users, or teenagers (at around the same time as these events took place, the AIDS Council's newest client was a twelve year old child). •However, the care team (the two members of it the client's family allowed to provide assistance to them) came to believe that the AIDS Council's attitude to the families of clients was inadequate because it was based on the model of clients as gay men. That is, it is clearly easier to maintain the view that a team supports a single person with AIDS when the client has no wife and children.
• The AIDS Council does not restrict its support programme to gay men. Increasingly, support teams are needed for clients who are bisexual, or married, or intravenous drug users, or teenagers (at around the same time as these events took place, the AIDS Council’s newest client was a twelve year old child). • However, the care team (the two members of it the client’s family allowed to provide assistance to them) came to believe that the AIDS Council’s attitude to the families of clients was inadequate because it was based on the model of clients as gay men. That is, it is clearly easier to maintain the view that a team supports a single person with AIDS when the client has no wife and children.

“Who have you been telling? I’m sorry, but I don’t remember hearing anything from you, unless we count what is said about the team behind our backs at area group meetings.”

“Nothing is said behind your backs. You’re supposed to be at those meetings.”

“Deirdre and I have got no time or energy for all the meetings when we’re with our clients all week…”

“Client.”

“What?”

“Client. You have one client.”

“We’ve got four clients, two adults and two children, and the rest of their family.”

“You’ve got one client.”

“Oh, this is ridiculous. We’re not getting anywhere.”

Dear Morris,

… I don’t think I like what the whole episode told me about myself. I like even less what it told me about some other people. It’s done now, anyway.

Both Adam and Henry have resigned. Did you hear what happened to Adam? It’s terrible. He went to one of those weekend things for team leaders-rest, recreation, and getting stuff off your chest about how things get done, or don’t get done, as the case may be-and had a good time. When he got back home he found his mother dead. We have all tried to console him. He can’t stay any longer.

There’s something about this, about the way it happened, that hits at the rest of us. Deirdre asks me whether any of us still have a life of our own, whether we realise that our own lives have to keep going on-knowing that the answer to both questions is no.

Now I am going to have to swallow at least a few of the bad things I’ve said about Henry, because before he left he arranged with the new area co-ordinator to have a new person—Mark—put on the team as a ‘carer for the carers’. This is a good move …

Anyway, I hope you get the feeling that I think this is great. I’ve spoken to Mark several times already and feel a lot better for it …

I have only gotten half way through a planned two weeks’ rest from the team, and the urge to return has beaten me. Something to do with the weather. Violent gales, freezing mornings and rain all week. P has the flu (so do two of the team) and her children are home. I have put a casserole in the oven and called to say I will be over to take the children to a movie for the afternoon. No protest. They are always in need of relief.

… picking up my report a week later, M has deteriorated quickly under the influence of a worsening chest infection. He slept through my visit, workmen banging in the flat above him, and the television on full blast. Nothing seemed to wake him except his own coughing, and perhaps he can do that in his sleep.

I feel we should be keeping a team journal that we could pass on to the Council’s training people. The training of new volunteers is going to have to come to terms with the increasing number of married people in need of care. You learn a lot in the support training, but almost nothing about the kinds of things we have had to do—which is, basically, how to keep a family together and safe when it is suddenly without a father. … They’re on the eleventh floor up there. All the balconies have been closed up to stop people jumping off and messing the footpath. When I arrived I discovered one of the glass panes of the balcony outside Themselves’ flat had been smashed, and there were slivers of glass almost the entire length of the walkway. It had been left like that for two days. I cleaned it up. I really get sick and tired of being told that this has nothing to do with caring for the patient. It has everything to do with him …

Jim

• Several months after M's death Jim was amazed, reading his own journal, at how positively he reacted to Henry's initiative. —But his lasting impression was bitter:
• Several months after M’s death Jim was amazed, reading his own journal, at how positively he reacted to Henry’s initiative. —But his lasting impression was bitter: “Though the AIDS Council and the area group were notified within hours of M’s death, no one has yet called anyone on the care team to ask if we are OK. The neglect of the carers has been monumental.” • Entries in the journal are not dated. For the period between August 1988 and January 1989 there are no entries at all, an effect of the deepening sense of crisis in the team and distrust of the AIDS Council’s ability to act on information being presented to it. • In particular there was the question of what to do about P’s abuse of Eve. There seem to have been several reasons for the AIDS Council’s intransigence on this matter. First, those on the team and some people in the area group differed on the question of whether care for the client’s family was part of the care of the client. Jim was told at one meeting of the area group, “I’m sick to death hearing about P. What about the client? He’s the one that’s dying.” Secondly, professional psychological support from the AIDS Council was completely inadequate. Jim’s requests for help had no effect; some of his letters to Morris are nothing more than catalogues of unreturned telephone calls and cancelled meetings. Thirdly, there was the problem of confidentiality. Jim and Deirdre seriously considered reporting the case to the Child Protection Unit of Community Services, but knew that if they did this they would have to resign from the team and from the AIDS Council. • And there was P herself, a person whose largeness of character, vulgarity, sexuality, strengths and weaknesses, mocked the idea that care services might be delivered to her husband without in every way referring to her. It is remarkable how little of M and how much of P there is in the journal, and how ill-prepared the team was to deal with husband and wife-which is clearly what was needed. • Talking about P, Jim referred constantly to the ‘women’s issues’ that the AIDS Council, and the community, failed to acknowledge. “Who does a ‘respectable woman in the suburbs’ have to turn to when her husband contracts AIDS? A gay man has the gay community. A woman whose husband gets the virus in a ‘respectable’ way—through transfusion—isn’t so isolated.” If Jim’s diary is sometimes cruel in its depiction of P, it should be remembered that he understood and acknowledged, before everyone else, how much she cared for her husband. • The excerpts that follow show something of P’s urgent, and normal, need of love.

… P and M first met Hans in hospital when M was in there for a dose of Bactrim and rest and Hans was visiting his lover. Hans’s lover has since died. Hans is very handsome and fit and tall and blue-eyed, oozing sexuality. P is very attracted to him, and cannot hide the fact (not that she wants to), even from her husband. I can see the reason for the animal attraction, but don’t know why P falls for men whose preferences do not favour her more clearly. What is she looking for? M is naturally very angry with P’s performance with Hans; or perhaps it is straightforward jealousy? … M is feeling well enough to go out, so Deirdre and I drive the three of them, M, P and Hans, to a pub where there’s a band playing. Deirdre and I leave to go off by ourselves, finding somewhere quiet to get pissed (which I believe we are doing more and more of these days!). After a couple of hours we’re quite happy and decide to go back to see how the others are getting on. P’s abuse of Deirdre is astonishing. “Who do you think you are, jumping on Jim without telling me?!” She wants to know everything everyone is doing, with whom, when, and how often; and she asks me straight out, later, whether Deirdre and I are having “an affair”. “You’re guessing. Anyway, no.” Before we leave, P tells me she is in love with Hans.

… I have given Eve many children’s books unused by my children for a long time. No one will read with her except team members. P interrupts the reading continually. I will not stop until I have finished the sentence I am in. She doesn’t like this … There is a nut missing on Eve’s little bike, and I point this out to P, saying that I will fix it tomorrow. “She’s a little bitch. She does it on purpose, you know.” “I don’t think so. It’s not her fault, I’m sure.” “You shit of a child.”

… P told me this afternoon that she can feel something moving in her uterus. “Something is kicking or moving down there!” She also says that she’s been on the pill during Hans’s visit, in order to be period-free.

… Hans has found a ‘new love’, a new man in his life. The penny dropped on P the other night when Hans was over for dinner. She rang Deirdre this morning, miserable, depressed. “I dinn’t ask for all this. I don’ need this trouble as well.” I went over this evening with a bottle and tried to cheer her. M is being difficult and short with everyone, but especially with P.

… Themselves have gone on a holiday to visit Hans in Adelaide. Isn’t this amazing?! M took incredible doses of Bactrim and other stuff to suppress coughing, in preparation for the trip. P returned with hideous souvenirs for Deirdre and me, things that I suspect were the produce of a sheltered workshop. “They’re lovely!” we said in unison, smiling.

Blank space 200x5px
• Both children stayed with relatives during this time. When P and M returned, the children were not collected immediately, despite their boy’s plea of homesickness.

… P has been on a diet, lost quite a bit of weight and is beginning to look quite attractive (if you are attracted to that sort).

… P and Hans had a great row when she discovered blood on his sheets (from his thrashing and heaving with the new man the previous night).

… What a family. Just think of the men in it, on both sides. P’s brother has been drinking pretty well nonstop since he heard M’s diagnosis. Is it the men who are so pathetic? Is it the women? What is it about the women, on both M’s side and on P’s side, that attracts them to such hopeless men?

… “You’ll ‘ave to stay a day or two more. I’m really too stuffed to go an get you. Your father an I will still look the same when you get back ‘ere. Don’t worry!”

… “I know I told you we dinn’t do anything but that wasn’t true. I did ‘ave my way with Hans when I was there. I know what you’re goin’ to ask-yes, he definitely did wear a condom, though I don’ know how he got it on because he’s got the biggest dick I’ve ever seen on a white man. I’m no longer in love with him. No. I’m not in love with him. I’m over that, I really am. But I still love him, sort of. -You know what I mean. You can’t just have no feelings at all. But I’m not ‘in love’ with him any more. I’m sure of it.”

… Deirdre had dinner with Themselves last night. Dinner and everything else. When she got home she called me. She is very worried about Eve and could not stop crying as she told me of what must be counted as an assault. P strikes like a snake at the child, so quickly there is no chance to beg for moderation. One second Eve is sitting quietly beside Deirdre, the next Eve’s chair is balancing on two legs, about to fall backwards to the floor. Deirdre’s hands are occupied with knife and fork, and her mouth open, as Eve crashes. There is no sound for a few seconds before the crying starts. Eve picks herself up, looks at her mother, and says, “I hate you.” War being declared, the troops mobilise. M gets up from the table, muttering to himself, goes into the bedroom. Deirdre wonders how he has suddenly got the energy to hobble so quickly. He comes back with a brush in his hand. “You can’t speak to yer mother like that!” She dodges him in the living room but gets caught in the bedroom.

“I’ve seen M use a piece of wood.”

“Jim, we have to do something, quickly.”

• During a period of four months Deirdre and Jim arranged meetings, made telephone calls, and had counselling sessions with AIDS Council psychologists. They got their hearing, eventually, and the message about the physical and emotional abuse of Eve was understood. Nothing happened. P was partly to blame: she broke appointments easily and intentionally, knowing that giving a psychologist access to the children was a danger to herself. Independent family therapists negotiated with the AIDS Council to take over the case until they were assured by the Council that it would take some action itself; but again the Council failed to deal with the situation assertively. Deirdre and Jim were interviewed by the Child Protection Unit of Community Services and sought the Unit's advice. The Unit encouraged Deirdre and Jim to make an official report immediately. On the same day, still considering what they would do, Deirdre and Jim spoke again with an AIDS Council Support Services Officer and mentioned their interview with Community Services: the AIDS Council was forced to act. •Deirdre and Jim were not alone in thinking action came far too late. One person, aware of the difficulties they had experienced, later resigned from the AIDS Council and officially reported the family.
• During a period of four months Deirdre and Jim arranged meetings, made telephone calls, and had counselling sessions with AIDS Council psychologists. They got their hearing, eventually, and the message about the physical and emotional abuse of Eve was understood. Nothing happened. P was partly to blame: she broke appointments easily and intentionally, knowing that giving a psychologist access to the children was a danger to herself. Independent family therapists negotiated with the AIDS Council to take over the case until they were assured by the Council that it would take some action itself; but again the Council failed to deal with the situation assertively. Deirdre and Jim were interviewed by the Child Protection Unit of Community Services and sought the Unit’s advice. The Unit encouraged Deirdre and Jim to make an official report immediately. On the same day, still considering what they would do, Deirdre and Jim spoke again with an AIDS Council Support Services Officer and mentioned their interview with Community Services: the AIDS Council was forced to act. • Deirdre and Jim were not alone in thinking action came far too late. One person, aware of the difficulties they had experienced, later resigned from the AIDS Council and officially reported the family.

Dear Morris,

… You know the routine. It was all a plot against her. The kids have nits. I took charge, told her to go up to Lygon Street to buy some Quellada and combs. While she was out I stripped the beds and started the first four or five washing-machine loads. Everything. Bedding, shirts, towels, dressing gowns. I hung all the pillows, blankets and doonas in that concrete room they have at the flats. There is not much sun in there, though, and I decided to take a lot of stuff home with me to give them a proper airing. While P was out, her mother volunteered the view that she would “dump” the kids as soon as M died. Apparently the family has discussed it and P’s sisters believe this is what she will do. Betty asked me what I thought would happen. I had to admit the same thoughts had crossed my mind. We spent four or five hours delousing the flat and the children.

Marg, our wonderful, absent team leader, returned with a vengeance and attempted to organise Deirdre and me. M couldn’t stand the sight of her, and P rang the area co-ordinator to ask that she be removed from the team, suggesting that someone else-anyone, straight or gay!-be got to take her place. So, Marg’s gone.

This will leave Deirdre and me in a worse situation, but we are learning to say no. I have just declined to spend five or six hours minding M at the flat on Friday while P goes to bingo. Deirdre is doing the same.

… and the trials of the hospital visits continue. Got M in the car and then went back to get the script from Dr Murray (I think you know him—he’s a good friend) and an appointment for blood tests next week. As I turned to say goodbye, Murray stretched out his arm for what was to be, I thought, a handshake. Instead, I got an enormous bear-hug. M was observing from the car, and when I got back to him he said, “He’s a homosexual, you know. You’ll be all right so long as you don’t take your pants down.” EEEEKKK!

… M’s back is extremely painful and he is definitely showing signs of an impending crisis—perhaps within the next couple of months. He’s started coughing again during the night and the candida is flaring up again. He is always cold. Even on mild days he is in his room with blankets and a heater, shivering!

Love,
Jim

Sad today. It’s my twenty-second wedding anniversary and, at seven in the evening, I’m home alone. The kids have gone out to party and Elizabeth is in the Howqua Valley, walking with friends. That’s it, I suppose.

Dear Morris,

… undoubtedly flattered that she is still attractive to men. We all need our egos stroked in this way and it is important to her in her situation. P seems to be saying to Deirdre and me (but not to Douglas), “I need a regular sex-life but I really want it in a permanent and stable relationship.” And why not? The men she chooses, though—remember Hans!? We have a strong sense of entering the stage where we have to help her prepare for the post-M days. That’s what Deirdre and I are currently trying to do. I can only hope that we are on the right track. She is certainly more forthcoming about her feelings, hopes and despairs. (But I wish she’d get some make-up and grooming advice to help her look less like a tart!)

… movie about a man emotionally dead but rediscovering himself at the end of an eighteen-year marriage—a bit close to the bone for me. I should have gone to see a porno film instead.

P has just rung to give me all the amazing details of her relationship with yet another bloke, this time a Greek trucker. She insists that she is “not doin anythin—a bit a neckin, an none a the in-out.” She says she is improving, and enjoying the limited physical contact.

Every visit and phone call she mentions sex and what it will be like after M is gone (in a sort of testing-the-water way). Maybe she is using us to give herself permission to be herself? The atmosphere is heavy with sex and sexuality in this team—always has been. Why? And why not?

When we go over to visit Themselves, M is rugged up in exactly the same position he was in when we left him a few days before. He asks where we have been and then listens to the boring details of what we have been doing without uttering any further comment. I watch him as I talk. The eyelids begin to close, as though he is falling asleep. He coughs up some deep yellow muck—and his eyes are open again. I continue talking. At these times I wonder whether he will, one day, just die in front of me, quietly, unnoticed, while I describe my groceries.

I took M to the hospital for a blood test and checkup. He has no T-cells left at all. He asked for “Morphine, poison or something” to relieve the pain. On the way home I broach the subject that has been on all our minds, the funeral arrangements, asking him what he would like to happen. He shrugs it off, saying “No fucking priests. Ask P about it.”

I bought Themselves some new pillows, as instructed, and took the receipt to the AIDS Council, where I was told the promised refund would take a few weeks—glad I’m not on the dole and desperately in need of money! Themselves were no more thankful. The covers were ripped off and the pillows put on the bed, without a word. Feeling miffed, after being asked how much they cost, that I hadn’t been thanked for getting the bloody things, I took one out to M for his approval. “It’s only a bloody pillow, isn’t it?” he snarled. Herself was sipping a tea I had poured her. “Jesus bloody Christ! What’ve ya done with the tea? Dinn’t ya scrub the pot out? I haven’t used it fer days—the bags were probly mouldy!” Feeling seriously used, abused, misused et cetera, I made her another cup of tea (tea bag in a cup this time). —And then I cleaned the pot.

… Understand that I am not paranoid; it’s just they’re all out to get me! I’ve a raging dose of thrush or tinea or something—down there. I’ll screw Deirdre’s neck, as soon as I stop scratching.

Am I boring you terribly with all this? Mmmm. Thought so. Yesterday P predicted that it would all be over in a week. Wife’s intuition, maybe.

Love,
Jim

• Jim wrote in the margin,
• Jim wrote in the margin, “And for nearly two years they had, mostly, disappeared, leaving the team as ‘substitute family’.”

The phone rang at half past three in the morning. Betty told me that M had “passed away” four hours before. I was not needed. The body had been removed and the kids were still asleep. The family were all together and “in charge”. Don’t come over. “Ring before you come, to see if it’s convenient.” The family closed ranks as it never had before.

At four o’clock, after making some tea and toast, sitting in the kitchen, it was still dark outside. I telephoned Deirdre (it was her birthday) and Douglas.

Dear Morris,

Thank you for your help and all your encouraging comments. You don’t know how helpful it has been to be able to write these letters to you. Writing is not enough—to write to someone is important. God knows the team has not had help from any of those who should have given it. There are more grievances, as you might have guessed, and much anger. I will take my time.

• It was five weeks before the AIDS Council contacted the team, and a further three weeks before a meeting was arranged between team members and a counsellor for 'debriefing'.
• It was five weeks before the AIDS Council contacted the team, and a further three weeks before a meeting was arranged between team members and a counsellor for ‘debriefing’.

Though the AIDS Council was informed of M’s death within hours, weeks have passed and we have not heard a word from them. We all feel abandoned and adrift. I could kill.

I went to a florist in Fitzroy to arrange flowers from the team. After writing the cards, the nice old queen who runs the place looked at my name, then my face, and said that he knew my brother so there would be a discount. I left quickly, went and sat in the car and cried like a baby.

When I visited P she was red-eyed and talkative. “Oh, Jim, it was terrible. Jus’ terrible. ‘E ‘ad these awful seizures an ‘is eyes rolled up so there wuz nothin but white there an I dinn’t know what to do. I jus’ dinn’t know. I called the Nursin Serfice after the secon one an all they did when they did come was tell me it was jus’ the fuckin medication an that was it. That’s it. That’s all ‘e said. An ‘e started to give ‘im a shave an a wash to make ‘im comfy but ‘e looked up an said if they fuckin moved ‘im again ‘e’d punch ’em. There was nothin to do, really. ‘E ‘ad anuffer seizure, almos’ jumpin, ‘is eyes went again, all white, so that even the bloody nurse was frighted out’f ‘is fuckin wits. The useless thing left soon enough an I made a cuppa tea. … I wen’ back inta the room an ‘e lifted ‘is ‘and as if askin me to do somethin for him. I got there. I jus’ got there an had ‘is head in me hands an ‘e sighed an that was it. That’s all. I spent some time with ‘im alone, thinking. An after a while I called the nurse back and we dressed ‘im in ‘is suit with a shirt an tie an called the funeral parlour. The kids were asleep. Slept through all of it. It was quiet an the nurse dinn’t say anythin. I called mum, of course. She’s been really wonderful, ya know. An she came an sat with me while we waited. Then they jus’ took ‘im out. I dinn’t wanna wake the kids. That’s all … “

Deirdre was mad, having also been told she should call before she went over, to make sure it was ‘convenient’. “Fuck them, Jim. It’s never been bloody convenient! We’ve been there all along while the family just ran for cover.” We decided to go together, defying anyone to ask us to leave. The day before the funeral we arrived unannounced, with quiche, pie and flowers, which had the effect of thawing the icy stares we got from mother and sisters. —After all this time, to be less welcome than a pie!

The next day I was up at quarter past five in the morning, unable to sleep. I worked in the garden for a couple of hours, emptying the compost bin on my vegetables.

Later in the morning Deirdre, Douglas and I met for a drink before going to the service. A lump in the throat when I saw the children and the coffin. P was tearful. During the service the priest mentioned that P wanted the nurses thanked by name. When no mention was made of the team Deirdre turned to me and said, “I want to go.” “No”, I said, as I held her arm, “he hasn’t mentioned the doctors either, or the home help, or the health aide … “
On the way to the cemetery Marg and Douglas discussed the costs of male prostitutes, and the risks, and whether the boys practised safe sex with ladies from one suburb and gentlemen from another. She pontificates about married men who… “They should be one thing or the other. They should make up their minds. They shouldn’t sit on the fence.” Too many shoulds. I gave her the lecture about the Range of Human Sexual Expression. Will I ever learn? She will not be satisfied until I admit to fucking every married man I know —and a few I don’t -, to interfering with little boys, and to giving M the virus.

Somewhere, feeling mad, I said, “And what’s wrong with a friendly wank between mates?” I don’t know who was more shocked—Deirdre, Marg or myself! The question stands. Sod her.

P told us, when we got to the cemetery, that the priest had advised her against mentioning the team. “So when they continued asking him, he lifted up himself, and said unto them, He that is without sin among you, let him first cast a stone at her. And again he stooped down, and wrote on the ground. And they which heard it, being convicted by their own conscience, went out one by one, beginning at the eldest, even unto the last: and Jesus was left alone, and the woman standing in the midst.” The significance of this story was lost on them, of course. Himself’s family hastened to position themselves at the front of P and the children. Insensitive, phoney. The father, who had only seen his son for thirty minutes in the last two years, struck a ‘pillar of the family’ pose. A certain amount of ceremony concealed hostility between the families. Venomous? Once it is written here it is finished. —And thank you for listening.

What a day it was. Later in the afternoon I went to my weekly marriage guidance session—alone. And in the evening there was an area group meeting. Douglas announced his resignation from the AIDS Council. I think I will do the same, but not yet …

I still feel, after all this time, there is a lot unfinished. Gaps needing to be filled. I’m very tired, despite getting lots of sleep. I have not known what more there could be for me to do. We learned how to be part of the family; loving, hating and caring more strongly. I have to learn how to be a stranger again. Uncle Stranger. Leave the gaps in the names unfilled. I won’t know what sort of person P becomes, how she will write herself. M? He was always unfinished. But I’m grateful that, because of him, I met Deirdre, who taught me to be sexually OK again; and because of him I met Marg (sod her), who taught me that I can’t be all things to all people, and I don’t want to be; and because of him I met Morris, who helped me find the spirituality I had lost in my life; and because of him I met Douglas—bless him—who taught me that I can ache for people who are graceless, but people, nevertheless.

… Deirdre and I played the message you left on her answering machine several times over for the sheer pleasure of hearing your voice. Truly! We’d had a belly full of Themselves that day and when we returned to Deirdre’s house, with carnal intentions, you were waiting for us. You never imagined that what you said could be so much like music and accompany us in our fore- and after-play…


This story was originally published in Meanjin in 1992 and 1993.
[Information about the David Williams Fund, where contributions can be made to assist people living with HIV.]

Exposed

For James, who died of AIDS on 18 September 1987.

When death starts its process first we resist, hard to watch
everything familiar and beautiful about the body shrink.
We say to ourselves, “I want him back” or “Give me back
that firm, healthy person!” When we are in the room with him
all of us want to shout “But where is David?! Where has he gone?!”

Then, all together, we have the knotted pain in the eyes,
recognising him among us as a poor remaking of the other man
we knew. “Michael, is that you I see? Is it really you?”
Bringing gifts and asking questions we have brought and asked
many times before, when he was still himself, is a test.
“Here are some chocolates I thought you might like, and yellow roses.”
Are these pleasures the new Paul knows? And who are you now?

In the last year his head is full of creatures and animal hate,
wide-eyed and terrified to live in the world where everything dies.
If he is fresh and strong in the morning, he is warm-blooded, huge,
growling in the garden. Afternoons in the heat he is worn blue
as a slim lizard, lies about, breathless, bumps into the furniture.

The old friends leave him, while he makes the real ones new.
No one dares come near who cannot answer questions:
“Are you friend or foe?” “Will you fight me, even now,
in the middle of all this?” and “Will I die? Will I truly die?”

Before the visiting hours the family takes a few stiff drinks,
wanders in the numb maze of the hospital, with threads hanging
behind them. All our tongues are pins and needles for lack of use,
or telling lies. “Oh, he has cancer, a tragic disease; I did tell him
not to smoke.” “Thank you for the card. He likes it very much,
and sends you all his love.” “He is better and we hope for a remission.”

Afterwards, alone, he practises the scavenging happiness
of birds, picks up crumbs from his own story, cries and laughs,
vomits the soft dinner, starves quietly and more surely
than anyone who waits for justice. Every sleepless night
some part is stolen and in the morning he is less there.

He is awake behind closed lids, while we dream
of planting onions, and hope for death. Even those who don’t
believe can see he becomes more real; the soul is exposed
and visible, resting on a cracked edge before it goes.

 

Published by ‘A First Hearing’, ABC Radio (Australian Broadcasting Corporation), 31 December 1989, and then in Overland, Number 120, 1990, and various anthologies.

[Information about the David Williams Fund, where contributions can be made to assist people living with HIV.]