Ruben Carlos Delcasse – Australian AIDS Memorial Quilt panel

Quilt panel, part of Australian AIDS Memorial Quilt, in memory of 'Ruben Carlos Delcasse', cotton / paint, made by Barbara Delcasse, Sydney, New South Wales, Australia, about 1994 Rectangular quilt panel, portrait orientation on a black background. Ruben Carlos Delcasse 18.10.55 - 7.10.94 is painted in purple on the top centre and there is a phoenix below it. Handprints and the names of significant people in his life appear below the following poem: "The night was as black as an emperor's pcoket (sic) and the stars used to tremble and catch their edges". This quilt is in memory of Ruben Carlos Delcasse (b. 18.10.55 d. 7.10.94). In 2010, Ruben's wife visited his quilt panel at the Powerhouse Museum and provided the following information. Ruben came to Australia in 1981 with his first wife and soon after their son was born. They were part of the large influx of political refugees from Argentina in the 1980s. Ruben had been jailed by the right wing Junta in Argentina for political activities. By Australian standards these activities were mild but nonetheless unacceptable in Argentina. They ended up at the Endeavour Hostel in Coogee, as many refugees did back then. In the 1960s and 1970s there was a great deal of community involvement, volunteers, who ran services to help newly arrived refugees. In Argentina Ruben had been a teacher, however in Australia his qualifications were not recognised. Ruben took a job as a lab assistant in the Pathology Lab at the Prince of Wales Hospital. At work, Ruben injured his back moving a tub of cleaning fluid which the cleaner had left in the middle of the lab. The injury to Ruben's back was great. He was off work for a long time and underwent surgery which was unsuccessful at fixing the problem. Eventually he won a substantial compensation payment from work. Ruben was always adventurous, keen to experiment and try everything life had to offer. In this way, in 1986, he ended up becoming involved with a group of illegal drug users. He used half of the compensation money experimenting with this group, but then stopped and moved on. None of the group had any idea at the time that it would be dangerous to share needles. Eventually all the people in the group were to die of AIDS related illnesses. Ruben would not realise for many years afterwards that he was sick. Barbara and Ruben met in 1991 and decided that they would get married. Soon after they made this decision they saw advertisements in the newspaper for deals on overseas holidays in either New Zealand or Bali. It seemed like the perfect idea to have a honey moon before the wedding, so they tossed a coin to decide the destination. New Zealand was the winner. Prior to the trip, Ruben had visited the doctor about a respiratory problem and been given a puffer. However, on the flight to New Zealand, half way across the ocean, Ruben's lung burst. An ambulance met them at the airport and rushed them to the hospital in Waikato. Ruben remained unconscious for a number of days as he would not respond to normal treatment. Finally the Doctors came and took Barbara out into the hall and asked a number of questions which at the time seemed quite strange. Is Ruben Gay?, Is Ruben a drug user? but Barbara had no idea what they were getting at. The Doctors looked at each other and Barbara realised they knew something that she didn't. They told her that Ruben was suffering from PCP. They asked for permission to take a blood sample from both Ruben and Barbara to test for AIDS. The results came back eventually showing that Ruben had contracted the virus. Barbara had not.. Ruben remained in hospital in Waikato for 11 weeks until he had sufficient lung capacity to undertake the flight home. The photograph enclosed on file shows Ruben when he was finally allowed to leave intensive care. All he wanted to do was to go and sit in the sunshine. The hospital staff and Barbara helped Ruben into a wheel chair and removed all the tubes and monitors so that he could go down to the hospital cafe to sit in the sun. Barbara and Ruben sat there and drank coffee and ate lemon tart. Eventually Barbara and Ruben were allowed to fly back to Australia. They were accompanied on the flight by a doctor and nurse. The illness in New Zealand had taken such a toll on Ruben that he never really recovered. He was to visit the hospital many more times in Sydney. He volunteered to be part of a trial of AZT and was on huge doses of the drug, The side effects of this were difficult to live with. In those days the dosage was much higher than it is today. Ruben went to the Prince Henry Hospital and was nursed by a fantastic and supportive medical staff. Such was the stigma of AIDS in those days that it was not uncommon for a man to die alone accompanied only by a nurse or doctor. Ruben made the decision finally that he would refuse to take food or water. For five days he refused everything. His sense of humour made him comment that it was a lot harder and longer to die this way than he had imagined. Ruben died in 1994 After Ruben's death he was cremated and his ashes divided among those he love. Some ashes went to his son who chose to interr them in the memory wall at Botany Cemetery. Some ashes were taken by Barbara and sprinkled at La Perouse where Ruben loved to scuba dive. He had never again scuba dived after his lung was damaged. Some ashes were smuggled back into Argentina and placed in the wall with Ruben's mother's remains. In those days it would have been illegal to send his ashes to Argentina, hence the need to smuggle them in and the need to break in to the cemetery at night. . Barbara planted some of Ruben's ashes at the AIDS Memorial Garden at Sydney Park in St Peters on the Princes Highway near the chimneys. The ashes were planted under a small jacaranda tree and every week as it grew Barbara would lug big containers of water to the garden to water it. At the garden Barbara would encounter many other families similarly tending to the trees they had planted to remember their loved ones. Unexpectedly the part of this garden with Ruben's tree was replaced by a car park. Sadly Barbara never got to see the jacaranda flower for the first time. A friend who had visited shortly before the construction of the car park took a photograph of the tree in flower and that was Barbara's last record of it. Also recorded on Ruben's panel is the name of Alex. He was an illegal immigrant who had come to Australia from Uruguay after he was diagnosed with AIDS. He had been diagnosed with AIDS while in hospital with pneumonia in Montevideo and the hospital staff had refused him treatment. As a result he and his mother had researched to learn which country in the world had the best treatment for AIDS. They came to Australia on a tourist visa. When that expired they remained illegally. Frequently he was tracked by the police, sometimes because the hospital staff had notified the authorities. Barbara met him in hospital and befriended him. A number of times Barbara hid him and he slept on her couch. Barbara was on the AIDS memorial quilt committee from about 1996 to 2000. Barbara was involved in the ceremonies involving the quilts including the annual one at Darling Harbour. At this time the Darling Harbour Authority would lend the Exhibition Hall free of charge for the ceremony. Barbara can also remember the distress of having to cancel one out door ceremony because of pouring rain. Fellow members of the quilt committee at the time were Douglas Knox and Marcell Hoff. Barbara said that visiting Ruben's panel was very cathartic, very moving but not distressing. The panel is so much Ruben that it is like visiting a friend.