Joan Golding’s life as a Warrandyte housewife was changed forever when she nursed her son, who was dying of AIDS. KAREN KISSANE reports on an unlikely activist.

JOAN GOLDING is 74. She has grey hair and laughter wrinkles and five great-grandchildren. She lives in Warrandyte with her husband, Ron, and goes to church on Sundays. Right now she is fussing over what to wear to her next social engagement. She is to be guest of honor at the Gay Rage Ball and judge the fancy-dress competition.

“I didn’t know what I could possibly wear,” she confides, amused at her own preoccupation with the question. “Then I remembered that, back in my weaving days, I won an international competition for making a grey Shetland lace evening dress, very lacy and floaty and fairy queenish, and I think it will be perfect. They’ll love it, they’ll just love it, I know.” And the woman the gay community calls “the queen mother” beams her grandmotherly smile.

It’s her trump card, really, that harmless-little-old-lady packaging. She grins when asked if she has ever been abused at any of her public talks on AIDS, and asks: “Who’s going to be rude to their grandmother?”

Golding disarms people by the way she tells her story, which she has done over and over again since she spent three years nursing her dying son Martin, who had AIDS. She holds on to that story the way the madonna holds on to the body of the dead Christ in Michelangelo’s Pieta.

But while the marble mother is forever frozen in that defining moment, for Golding, the experience of losing her all-too-human son was a radicalising one that launched her into a new life. She has become what the Greeks call a doula, a woman who mothers other mothers. And she has ventured a long way from the shelter of her middle-class cocoon.

Golding’s story begins at home, in the little house set among Warrandyte’s rolling hills and piping bellbirds, where she raised her four children. She gave up her work in a university physics department to stay home with them while Ron travelled the world pursuing his career in physics.

When the children were grown and left home, Ron worried about how she would fill her time while he was travelling – “I think he saw the spectre of the sherry bottle in the background” – and for her 50th birthday he gave Golding a spinning wheel, so
that she could play a contented Penelope by the fireside to his gallivanting Odysseus. She dutifully learnt to spin, and spun until she had a wool pile of fairytale proportions.

To find a way to use the wool, she enrolled in a beginner’s weaving course and then a professional course. She finished up on the staff of the college lecturing in textile technology – “which was not what Ron had intended when he bought me the spinning wheel” – and was later hired by the Australian Wool Board to act as a consultant to the Thai silk industry. This necessitated a lot of travelling throughout South-East Asia, teaching spinning and dyeing and weaving.

Martin, meanwhile, was their youngest – clever, funny, the kid who loved being the centre of attention. After he finished his university degree, he applied to the Department of Foreign Affairs for a position as trainee diplomat, along with 25,000 others. He was one of five who succeeded.

Joan Golding had known Martin was gay since his teens, though he didn’t know she knew until one day when he came from uni to have lunch with her. They ate on the wide timber balcony that runs the length of their house, a place in which many of their family dramas have been played out. As he left, he called from the door, “I’m homosexual, you know.” She called back, “I know, darling.” And so he came back in to talk to her about it. “I often wonder how he enjoyed his lunch that day,” she says drily.

Golding felt sad about some of the consequences of her son’s homosexuality – the fact that he would have no children, and that he would be a bit of an outsider with the larger community – but it did nothing to change her relationship with him. The great tearing grief came years later, on that same balcony, when he flew back from Holland to tell her that he had AIDS and was dying. “It was the worst moment of my life,” she says. Golding was surprised when he asked her if he could die at home. She promised to nurse him until then. She had no idea what she was committing herself to.

“There are many, many AIDS-related illnesses,” she says, “and it seems to me that very often people are affected in the areas they would least like to be. The gorgeous-looking men develop this frightful Karposi’s sarcoma. They end up with raised purple blotches, looking the most terrible freaks. People like dancers and athletes will lose the use of their legs from a nerve disease. And Martin, who was so bright, and so sharp, and such a reader, lost his eyesight and developed dementia.

“He had to be led around and fed. His continence went because of the dementia. For someone who had so much dignity . . . and yet his illness was not physically painful, which is something to be grateful for.”

For much of this time, gratitude was not Martin’s strong suit. He was venomously angry and directed most of it at Golding. She says this is typical of young AIDS sufferers being nursed by their mothers. “It’s about how you’re going to be there when he’s gone; they’re resentful, they’re frightened . . . the mother is the only person in the whole world that he would speak to like this, and it’s because he knows that she loves him and she will still be there. But it’s very hard to remember that when you’re being screamed at.”

And Martin knew just how to wield the stiletto. Golding would take enormous pains with his food and he would complain bitterly about how boring it was. She would beg him to stop embarrassing her with his rudeness to others during hospital visits and he would sneer at her for being so middle-class – “This terrible insult,” she chuckles.

He knew just how far he could go before turning on the wicked charm that always brought laughter and instant forgiveness. The bitterness is something they all go through, she says, “and then it calms. I think they must spend all their time thinking about death and the end of their lives and eventually must come to some sort of reconciliation in their minds”.

As Martin became sicker, mothering took on the physical intimacy of babyhood: feeding, washing, lifting, changing clothes, even reading him children’s story books because he could no longer follow adult ones. By the end, in May 1989, they were so close “he was like the baby in the womb again”.

He died the peaceful death that she had prayed for and afterwards Golding felt fulfilled. She had been given the strength to do as he wanted and she expected now to get on with her life. The problem was that she found she could settle to nothing. The AIDS patients at Fairfield had an idea. Please would she speak to their mothers?
Golding knew how hard it was to be alone with this ordeal. The family had united to help, and Martin’s partner moved in with them, but they had not told their wider circle about Martin’s illness. The few people who did know – the local vicar, doctor and dentist – were less than helpful at first. They struggled on alone until the day that a very weak Martin decided he wanted to go to church. She and Ron half-carried him up the aisle and found themselves surrounded by friends trying to hug them and shake their hands.

“We were met by such a wave of love and compassion that I knew that these people, who knew us so well, had realised that there was something very wrong in our family. And we had denied them the opportunity of supporting us, and I felt very badly about that.” Once the local community knew, the family had visits from people they hadn’t seen since Martin was in kindergarten.

“I try now to persuade people who are in that situation at least to tell their family and their close friends, but I have hardly any success because people are so terrified about community attitudes. There are women in the country and in ethnic families who are struggling on utterly alone.” Often their husbands are little support because they are overwhelmed with shame about their sons’ homosexuality, she says; while mothers grieve for the death sentence, conservative fathers are more devastated by the perceived slur on their manhood.

“I’m always telling families that if only they can get rid of the pride that goes with worrying about what other people think and will say and will do, there’s enormous freedom. And, if ever I do convince them, they have the same experience that we did. People are happy to support each other, given the whole truth.”
Golding’s early relationship with the gay community and the AIDS Council was tentative because they were suspicious of this conservative-looking do-gooder and she had her reservations about some of their activities. “That was in the days when Act-Up (Aids Coalition to Unleash Power) was very busy, and I used to spend a lot of time cringing. They did shocking things like tearing up all the seedlings from the floral clock in St Kilda Road, painting slogans and stopping people getting into meetings. But they have all died or lost their go now.” She sighs. “Unfortunately.”

Many angry young men with AIDS lock their families out, says Dr Ron McCoy, who works with AIDS patients. They might have been rejected by their families because of their sexuality, or they might have hidden it until they became sick. This can make for painful tensions between the patient, the biological family and the “family of affiliation”, the patient’s lovers and friends in the gay community.

“Joan recognises that all relationships are important,” McCoy says. “She said that when Martin died she couldn’t go back to weaving, but I actually think what she’s doing now is exactly the same thing. She’s working with families that are splintered and joining them back up. She’s weaving the social fabric.”

Golding drives all over Victoria in the little green car given to her by the AIDS Council. She is available to families who phone in crisis and several times a week talks to any groups that care to listen: schoolchildren, health professionals, clergy, men’s clubs, ladies’ luncheons. Like a good novelist, she knows that preaching kills a story, so she tells hers straight and lets people make of it what they will.

Sometimes they tell her that her son would be so proud of what she’s doing. It makes her laugh. She can still hear that voice groaning, “Mum, you’re so middle-class!”

Volunteers will be selling red ribbons for World AIDS Day tomorrow.

First published in The Age.