Podcast Interview: Patricia Kennedy OAM, When HIV first came to Australia

Speakers: Drew Browne @unusualrisks and Patricia Kennedy
Transcript: (1 of 5) Introduction to The Story of Patricia

Drew Browne: [00:00:00] What would you do? They are dying in hospital corridors. The government is in a spin. Hospitals are overwhelmed. The public at large is panicking. And then persecuting. Sound like fiction? Well, you'd be wrong. It was 1993 and a strange fatal disease from America had burst across Australia's border.
[00:00:28] Radio Announcer: The scientists say they're dealing with some new deadly sexually transmitted disease.
[00:00:3] Drew Browne: Patricia Kennedy, a Scottish immigrant chose not to panic. Instead, she showed compassion and dealt with HIV and AIDS head on.
[00:00:40] Patricia Kennedy: [00:00:40] As far as I was concerned, it didn't matter who had it …
[00:00:44] Drew Browne: [00:00:44] Her brave service earned her the Medal of the Order of Australia (OAM).
[00:00:48] Patricia Kennedy: [00:00:48] It doesn't make me a hero and I didn't want it.
[00:00:50] Drew Browne: [00:00:50] Pat recounts that important perspective of life on the front line of caring, sharing an undocumented reality of a death by AIDS.
[00:00:58] Patricia Kennedy: [00:00:58] His mother would not come near him. That's how bad the fear was.
[00:01:04] Drew Browne: [00:01:04] Hear a raw account of the horrifying stigma and politics that pervaded all aspects of the Australian epidemic.
[00:01:12] Patricia Kennedy: [00:01:12] Politicians were a thorough pain in the ass, people building their own careers. Sad isn’t it.
[00:01:17] Drew Browne: [00:01:17] Don’t miss, The Story of Patricia - A Grandmother's Flight To Do What's Right.
[00:01:23] Battling HIV stigma in Australia.

Speakers: Drew Browne @unusualrisks and Patricia Kennedy
Transcript: (2 of 5) You don't have to be a saint to do something good

Drew Browne: [00:00:00] On June 9th, 2003. Mrs. Patricia Doolin Kennedy resident of Western Sydney, was awarded the Medal of The Order of Australia (OAM) for her services to people with HIV and AIDS in Sydney and Western Sydney. An unassuming straight-talking grandmother of two, Patricia's story is one of strength, virtue, courage and unyielding compassion in the face of suffering and despair.
[00:00:29] Born and raised in Scotland, she was one of the last immigrants to take the boat to Australia, rather than fly. Previously she’d worked with disabled children in the Scottish school system but saw Australia as a place of immense opportunity. Australia in the 1980’s and early 1990’s was waking up to the harsh reality of HIV and AIDS.
[00:00:54] The government's response was swift and a variety of successful public health programs were implemented. Most notable was the now infamous television commercial featuring the Grim Reaper 10 pin bowling.
[00:01:07] Government TV Commercial: [00:01:07] At first only gays and IV drug users were being killed by aids. But now we knew every one of us could be devastated by it.
[00:01:19] The fact is, over 50,000 men, women and children now carry the aids virus, but in three years, nearly 2000 of us will be dead – if not stopped…
[00:01:32] Drew Browne: [00:01:32] That imagery would haunt the up until now, naïve and uninformed, general public. Consequently, HIV and AIDS became the social leprosy of the time. In the decades had followed many medical advances meant that aids was no longer
[00:01:49] the automatic death sentence at once was. In the high profile government, health and media coverage it once commanded, began to markedly taper off. And there is still no cure. Yet HIV and its life-changing consequences still sits under the radar for the majority of young Australians today. Those born after the mid 1990’s might not appreciate the staggering personal struggles that occurred in the late 1980’s.
[00:02:18] This was a time before mass internet access and as such remains largely, undocumented. One of these stories is The Story of Patricia. Our straight-talking grandmother's role in the Australian story of HIV and aids begins in the early 1980s when the world was confronted with this new incurable disease
[00:02:41] and it's terrifying stigma.
[00:02:45] Patricia Kennedy: [00:02:45] Well, in the early 1980’s, in 81, I had five units of blood at the Nepean Hospital. And for quite a few years after that, I was still quite unwell. And I started to pick up on this, strange disease from America. And then it hit Australia and there was talk of this. And I read in a newspaper about these guys who were in the corridors at
[00:03:16] St. Vincent's hospital that were dying in the corridors, because they couldn't get them into beds and, and there was all this panic and I thought, now, I could have that. And of course, at that time they were saying, no, no, no, it wasn't through the transfusion or anything else. It wasn't till 84, that it really going strong that the blood bank was having to say ‘well we're looking into this’, and I decided to, I would try and find out about myself.
[00:03:50] And I went to the doctor, and he felt my glands and said, ‘You can't have it because you don't have swollen glands’. And I'd said to him, look I think I might know a bit more about this than you do, and on what I've read, I want to get tested. And he said, oh, you can't get tested. It costs a fortune, far too much.
[00:04:10] You've not got it. So, um, uh, I phoned up Parramatta, there was no Westmead Hospital then, Parramatta was the hospital and I phoned to ask and they put me through to the STD Clinic and I said, ‘I'd like to come down and get tested for this disease’. They didn't call it HIV then, it was initials and ‘GRID’ and all sorts of things.
[00:04:36] And she said, oh, yeah, come down we do that. So, I headed down Paramatta and when I got there, she said, look, I'm sorry, we can’t test you because you have to be gay, a drug user or a prostitute before we can test yah. And I said, well, I come down from St. Mary's. I stopped off at Pine Grove, picked up this guy and I gave him sex
[00:05:09] in exchange for some drugs. So does that qualify? And I've left my sister, my girlfriend at home cooking dinner. And she said, no, I'm sorry. We can't do that. But you can go to down to casualty. So I went casualty and then ask him, she said, what can I do for you? What's wrong? And I said, well, I want to get tested for this
[00:05:32] Virus. And she jumped back about a mile, and she said, oh no, we don't do that. And said, yes, you do. You're going to talk to the doctor. So I did get tested. And they said, well, your results will take two or three weeks. So, I had read in one of the magazines for this time that they were before they gave you give the results
[00:05:57] you had to see a counselor, because people were getting the results and they were suiciding - if they were positive.
[00:06:13] So I waited a couple of weeks and I phoned to see if the results were in and the girl says to me, ‘well, you'll be pleased to know you're not pregnant’. And I said, well, I'm not surprised considering I had a hysterectomy. And she said, ‘oh, if sometimes, and they couldn't find the results’. So I went to Albion street, and that's when they said, what you want tested for? And I said
[00:06:38] everything. They gave me the whole lot. And that's when I decided what if I had had it? So that's when I decided I'd like to get involved in. And I actually phoned up St. Vincent's thinking, how naive can you be, that I could maybe go and wash pajamas for these people that were dying in corridors and stuff like that.
[00:07:03] And she said that there had been a group of young gay men that had started an organization there, to care for people at home. And she gave me the name of this young man so a phoned up and he had arranged to meet me at Paramatta. And I went there and waited and it was pouring rain and he didn't turn up.
[00:07:28] And to my knowledge, I didn't know any gay person. And I thought, I wonder if that's what gays are like; he didn't turn him up. But when I got home, he’d left a message to say his car had broken down at Homebush and could it make another date and he did. And that's when I got involved. I joined this group there was only one other straight person that was involved in it at a time
[00:07:57] an other women, bit like me. I had given up my regular job because my grandson spent a lot of time in hospital then, my oldest grandson and my husband had a contract cleaning business at night. So I lived through that him and I could spend some time with the youngest grandson or just spell my daughter in the hospital.
[00:08:23] And so I was able to give a lot of time as a carer. And this other lady who had a family, she'd had a big family, they'd all grown up, they'd all moved away. So we were able to cover it a lot shifts. And that was my involvement.
[00:08:41] Drew Browne: [00:08:41] Patricia tested negative to the HIV virus and could have easily been satisfied to put that painful experience behind her.
[00:08:50] Instead, Patricia felt compelled by what she saw happening around her to take a stand when it seemed that nobody else was. This was the beginning of her journey to fight against the crippling stigma and discrimination surrounding HIV and AIDS. Over time, ‘Pat’ Kennedy became known as a formidable carer and advocate for people diagnosed with HIV or aids, regardless of gender, race, religion, sexuality or culture.
[00:09:22] What were her motivations for getting involved?
[00:09:24] Patricia Kennedy: [00:09:24] Well, simply because, I felt it was something that needed to be done. It didn't matter who had it. And when, the stuff that was coming out in papers and magazines then, it was obvious that wasn't a gay disease - worldwide it was and still is just a heterosexual thing.
[00:09:47] It was just, unfortunately that the first people that were diagnosed, the bulk of them in Australia were gay. And it didn't matter that, you know, sexuality didn't come into it. It was a case that people were paranoid about it and they were help needed and as far as I was concerned, they would have been the people that group
[00:10:13] that I ended up joining, if I had been infected with this it would have been the ones that were caring for me. Because the straight community wouldn't have done it. And ironically, some of the first people that we cared for, were actually heterosexual. You know, it had nothing to do with the fact that the majority were gay and the majority were young.
[00:10:40] And what hit me with the whole thing was, I spent so many shifts with someone that was dying, that was a young person, and there would be another volunteer with me. And it could be a young 21 or 22 year old gay man who had the virus who knew he was on very limited time, was already unwell and they were giving the time to care for someone else.
[00:11:11] And to me, that took guts - a hell of a lot of guts.
[00:11:16] Drew Browne: [00:11:16] Volunteer carers for people suffering with HIV or AIDS formed donation funded networks to try and address an expanding need for their services. But the problem of distance and scarce resources meant, that all services focused on the city of Sydney; the suburbs with totally neglected. Pat recounts, the early days of one such community network in the city.
[00:11:39] Patricia Kennedy: [00:11:39] Well, it was called CSN, and it was a group of young gay men who a lot of them had the virus themselves and decided that they needed to do this. There was a young American who died in St. Vincent's Hospital and one of the ministers, then Jim Dykes actually, he got a group together to help care for this young man.
[00:12:12] And when he died, they went to others, they realize that there was a whole lot. So half of them, went as a new organization, that's actually the Bobby Goldsmith Foundation to raise funds, to support people that were sick, a um, at the beginning there wasn’t community nurses on board or anything else, all that was very slow in coming and, um, and the other half
[00:12:45] became Community Support Network (CSN). And they actually did in-home care. You moved in and a shift could be anything for four hours to 24 hours. You could do an overnighter if someone was really sick and it was rather ironic because the other lady and myself, being true bit older straight women, and everybody was so grateful to us.
[00:13:14] And as I say, the sad thing was to me, it was nothing to us. We had the time, we had raised kids so we were used to it, and I’d worked with disabilities in Scotland, a um, she'd raised a big family, and what struck me again, and again, was these young men who as I say were facing death themselves. And they'd be there on these shifts.
[00:13:42] We'd done a lot of crying. We've done a lot of laughing too, you know, because it got that you get a sick sense of humor, some situations that people would have thought, oh, that's horrific, we'd be rolling about laughing at it and it was just, I supposed to be just a bit of hysteria, but these young men were absolutely fantastic.
[00:14:06] And that's what helped me keep going actually was them.,
[00:14:17] I can remember one time I went to these young men, he was a young Aboriginal man and his partner had to work and he was dying and he actually came out of the hospital to die at home. And he had lost his sight and when I got there, his partner left for work and he had said to me, before he left, ‘Ive put a load of washing in there, could you do the washing for me?’
[00:14:48] And I said Yes and he said if you need gloves or pads or anything there in the next room on top of the wardrobe. So he went off to work. He’s only, no sooner gone and the other women had done the night shift, straight women had done the night shift before me. And she said, ‘Oh you’re okay’ because this young man had massive diarrhea, but it only had it every second day.
[00:15:14] And she said, you're in luck. He had it during the night, you’re okay so when I was told, where the pads and everything were and the blue sheets, uh I thought I'm fine I'll get them later and, um, his partner was only gone five minutes and he, um, I could hear this gurgling and I had massive diarrhea and here's me trying to clean up and he was wonderful.
[00:15:43] It was really great. He's given me directions, he’s telling me what to do, once they get everything cleaned up, he settled down and I went to do the washing its part of my shift. And when I went to put it out here was the man, all his business shirts and he had a pink shirt and I had put it in the wash and all the white shirts were pink.
[00:16:06] And I was in a panic and I phoned the office and I'm nearly in tears. And of course the guy that answered the phone is a gay guy as well. And he says to me, what's your problem? And I said oh, I’d all these shirts, these lovely white shirts and I’d dyed them pink some days. And he killed himself laughing in this little voice from the bed said,
[00:16:28] ‘Do the bugger the world of good; he can flaunt his sexuality and, and actually that can be more than anything. And this was the partner. So for the rest of the shift, I sat next to him and while I was sitting there, I got a phone call, well, he got phone call when answered the phone it was some Aunt she wanted me to tell him some cousin had
[00:16:57] died. And I said, look, are you sure you want me to tell him that because I thought he's dying and she said oh it’s very important, it's part of our culture and he needs to know. So I gave him the phone and let him talk to his Aunt, and when he finished his said, you know, I should be with my people at this time and we should be thinking of him and communicating with them as he's leaving.
[00:17:28] So I said to him, well, look, I don't know anything about this, but however, I hold your hands and we stay quiet, and you communicate when there, and that's what we did. So an hour later Nurse came, because we had got community nurses on just recently and an nurse came to help me to turn him and wash him.
[00:17:50] And the bed was against the wall, and we were frightened that it would roll over and hit the wall. So I got into the other side of the bed and she rolled him over on top of me so that well, leaning on me, so that she could wash his back. And he said to me, ‘This would be a nice way to die with your arms around me, but my reputation would be absolutely ruined because I'm gay’.
[00:18:18] I said, I bloody know that you know, but that was a typical shift at that time. It was common to go on a shift. And while you were there, the person you were caring for would die.
[00:18:31] Drew Browne: [00:18:31] Prior to mass internet, it is clear that much of the details of events and stories in those early days were likely never documented. How much information does Pat feel has been lost?
[00:18:44] Patricia Kennedy:[00:18:46] I think an awful lot has been lost, and I think also and it still exists was the feeling then that everybody with AIDS lived roundabout Oxford Street. For the first six or nine months, every shift I done was in the city. And then I found at one stage that I actually got a phone call to see if I could go up to Katoomba and get a man and take him to St. Vincent's to the clinic.
[00:19:14] But by the time I got home and got the message and rung the office they said, ‘look, we'll arrange for an ambulance to take them we couldn't wait it was to be the next day and we didn't know when you would be in. So, a couple days later I thought, okay, he must have to do that fairly regular and I phoned in to say, well, let me know the next time.
[00:19:36] Give me a day or two notice and they said, oh, look, the ambulance guy was so paranoid that this man didn't leave St. Vincent's, he told them, ‘keep me here. I'll die here’. And so, I say to the city, I will never do another shift there in the city, I'll stay out west. And they said, well, you can't do that because if you get someone and you can do a couple of days and then they get really sick, we don't have the volunteers out there to do anymore.
[00:20:11] And I'll said well, I had visited Westmead clinic and it was crowded. There were lots of people there, a people with the virus. And I said, look, you know, if somebody gets a couple of days when they need it, then they might survive an awful lot longer. Well, within a couple of weeks, a had someone for every day.

Speakers: Drew Browne @unusualrisks and Patricia Kennedy
Transcript: (3 of 5) Whatever the need was

Drew Browne: [00:00:00] The situation in the city of Sydney was clear and CSN was doing all it could to care for people suffering from HIV or AIDS, as outpatients. However, Patricia knew that this was nowhere near the whole story. Not everyone with HIV lived in the city. She recognized early on the need for service to extend beyond the city, wherever the need was.
[00:00:28] Particularly in our own greater Western Sydney. Pat quickly became an advocate for people living in the suburban West and this became a new focus. But this path was not easy and filing financial and community support was beyond difficult. There were ramifications with CSN in the city and sometimes her new Western recruits were not quite what she was looking for.
[00:00:54] Pat tells us.
[00:00:56] Patricia Kennedy: [00:00:56] It cost a bit of kerfuffle at first CSA had no other volunteers in the West and there was one man, but he done everything in the gay man and he done everything in the city and they had a really great training course, you know, two weekends for the Friday night, the Saturday and the Sunday, but nothing happened in the West.
[00:01:19] So that's when I started; we’d very quickly had someone to care for every day of the week, basically. And going to the clinic at Westmead, I made friends with a lot of guys who were so-so health wise, but when we started they would help each other. And it was really ironic. I had one man who was, well they told him he needed a wheelchair and he loved the attention in the wheelchair.
[00:01:50] So I would go pick him up and he would, push him out in a wheel chair then he’d get out of the wheelchair and put it in the boot for me, lift it in and then we would go to someone else that needed care, because he would say I’ll come with you. So he would come in and then help me to care for this person who was a bit unwell - and might pick up might not,
[00:02:17] And that's how we started getting volunteers. CSN advertised for volunteers for us, but a lot of it was family, friends, eh, because it was something you had to be careful, because you went through a period where someone wanted to do it because ‘God told them to do it’ and they would go and one woman I spoke to, was going to do it because she felt that she could.
[00:02:47] get the devil out of these people. And they would never, they would be much better because that was ‘her calling’. So you had to certainly weed people out. So it gone for a bit, the next five years when the City, who had nobody out here out west got a potential volunteer or a potential client that needed care
[00:03:15] I would go in and see them and do the interview and report to the city. Done it all in a voluntary capacity, of course, but ah, um, and that's how we've been volunteers. They would be trained in the city. And then there would be, come out I would say to them, you know, tell them who, who to send them to and when it was needed and the best thing.
[00:03:40] And that's how it started.
[00:03:49] From Westmead we'd maybe arranged that a group, a had at that time, I had, an above the ground pool at home and, for a while we met there, but it was a bit hard because the few people that had cars had to pick up people that went unwell, this was people that were sick. That went on mend and they would come to my house and we'd have a barbecue and a meeting.
[00:04:16] And then we'd go, we'd done that with some of the volunteers would come bring them out and help, a felt that was a bit far, St Mary’s and we would do things like when we'd go to the Koala Park and different things, because you had all these young people that would go into clinic, and that was their event of the week, they were too unwell to get out, especially if they didn't have a car, their families were quite paranoid
[00:04:46] and I think the saddest thing for me and this applied very much so when I was going into the city as well, an awful lot of them had come from another state or another country and they would maybe communicate with their families quite regularly. Their families didn't know they had HIV because their families didn't know they were gay.
[00:05:10] And I think that's when, as I say, I had, when I got involved, I didn't know, or wasn't aware a gay person. And I think that's when I realized this is something that's the way you’re born. From Richmond to Katoomba over the other side, even to Camden and they were juts people that needed help. And they couldn't tell the neighbors when they were living with their parents in a lot of cases, when I was doing the training course, I thought, how am I going to fit in here?
[00:05:49] Because I was doing the training course on everybody that I was doing it with. And the training courses were usually about 30 people at least twice a month. For two weeks of the month. So it was a continuous thing. There were a lot of volunteers, but I thought, where am I going to be fair in to this? And I actually found, especially when it came in west, but even in the city that I fitted in, because as far as neighbors were concerned, that could have been an Aunty
[00:06:21] or a cousin or whatever, you would dress in a way that you weren’t obviously gay, and because it been young men that got sick and come back to mum to be cared for, and mum and dad were paranoid in case they were found out what they have. So how sad is that? How tragic is that? That, that was the system, the environment that we're living in.
[00:06:50] That was society. Do you know now social workers, they'll say, ‘oh, but kids today are so educated, people at educated now – the general public is still, is ignorant. They still think that HIV is going to be AIDS and it doesn't always apply, and the AIDS is only an Oxford Street, they do not see it as being a thing
[00:07:17] and of course, you've got the AIDS Council and all the other things, now they've dropped it used to be HIV slash AIDS have dropped the AIDS cause it’s a manageable disease. It's still a virus that changes your whole life. But if you get diabetes, if you get any other illness, it changes your life, but you get, you get support around you. If you've got HIV, you still keep it quiet.
[00:07:47] I know people that have had it for 25, 30 years and the families don't know; they still do not talk about it.
[00:07:57] Drew Browne: [00:07:57] The ignorance and prejudice of the time was not the only complication facing Pat. With an unprecedented public health situation open-ended government spending and the prospect of quick and favorable publicity, selfish politics were rife.
[00:08:11] Patricia Kennedy: [00:08:11] The politics was terrible, was absolutely terrible. I would need to say it was the gay community that got a great response for, well from the government. And that was a few politicians. And that stage there were only I think, one worker for the AIDS Council, you had others that worked for . Community Support Network, CSN but the gay community in general, I'm a message could go out,
[00:08:40] ‘We're going to march, you know, on parliament today, Government house or whatever, because of this and this, and people would just go and they'd march. And we got things pushed through. I mean, they even got that, they could prove in a needle exchange for any drug users and that stopped, that prevented a lot, lot of the virus in Australia. The response was great, but then the politicians were a
[00:09:14] thorough a pain in the ass, because that's all they wanted. It was people building their own careers. You had all these people that were, working selflessly to help and then you had the politicians that were just big noting themselves. And unfortunately, some of them were the directors of some of the organization and the charities, and still to this fee, they get big money.
[00:09:43] And the money has not gone to what it should be going to because nobody's this, this is now seen as a manageable disease and in that time it was just a disaster. There was a lot more that could have been done if we could have got rid of some of the poll… and when I say politicians, politics, I'm not talking about government.
[00:10:06] I'm talking about the organizations. You know, I can even remember caring for a little girl. Seven or eight years old and she was dying and I'm getting phone calls a from the head of two of these organizations that shouldn't even have known I was there because of confidentiality saying, ‘well we’ve had reports, she's died?’.
[00:10:31] Has she died yet? I’m, with the minister and the minister is interested, … and I was actually as rude as hell to them and told them to ‘F off none of their business’. It hjad nothing to do with them, but it was really distressing because you had this little girl, she’d learned from the television that her mother had died
[00:10:49] from this disease and she had it and she was dying and it was horrific. And it was politics again where there phoning and saying they like a report. And there was no way I was going to give them it. So it was that it was a lot disgusting things happened. If people didn't fit in, if you had a gay man who had the virus and who wasn't happy with what was happening and if he was a carer if he spoke out, he could be crucified.
[00:11:24] So, I suppose that's life, politics is everywhere.
[00:11:28] Drew Browne: [00:11:28] Over time Pats CSN Western Sydney operation found it wasn't alone in the west and garnered important support from the public hospital system and other community organizations, such as the Catholic church. However, even around these institutions, she found disappointing examples of misinformation, ignorance, and fear
[00:11:47] when it came to dealing with HIV and AIDS.
[00:11:51] Patricia Kennedy: [00:11:51] We were very involved with Westmead. I had a huge support at Westmead, but you would have things like, one of the Catholic church wanted to open a Respite Centre because when someone was dying, it was very hard to get them in the hospice, but they didn't want them in the hospices.
[00:12:14] They were afraid because everybody in the hospice would get aids and they decided that they would, they had a place at Quakers Hill and there was a couple of community things there and they had a house and they were going to make it a Convalescent / Respite Care place, because it meant that when someone just needed a bit of care, when treatments were making and coming and they needed bit care to pick up, and didn't necessarily need a hospital stay, there was no way to go.
[00:12:48] So, they would try and get them into a hospice, and they would be convinced they were dying an guess what - that's exactly what they done. And I can remember they had this big thing to try and convince the people in Quakers Hill, they weren’t all going to have AIDS, because of course at a council meeting to see if what they would doing and there was a ruckus.
[00:13:13] It was knocked back. They appealed and Bishop Beed actually had to meet and he was the Bishop here then and he came out at this meeting. This man screamed at him, ‘Jesus went out to the lepers, his didn't bring them into the community’. And that's the way people thought. I went with the first patient that went to St.
[00:13:41] Joseph's at the beginning, they would at St. John of God. Somebody for the west could go St. John of God at Strathfield. And they would work very well educated. And then the funding was taken for them and it was given to the St Joseph's, at Auburn and the first guy that we, we took them in there and I went and then had made a cup of tea and we're sitting having a cup of tea and would go now where the cup of tea, I'm going out with the cups to wash them.
[00:14:09] And then they would say to me, ‘well, you can't bring them out in that room’. And I said, Why not? Oh no, she said, we have to decide they have to go through this special sterilization and all of this. And I said, ‘bullshit’. And she said, oh good. We don't know anything about it. So I actually spoke to clinical psychologist that was at Paramatta then, and she brought a team in to do education there
[00:14:36] And these were the first people that were taking them to die there as a hospice. We have, we have quite an aging group now. We have quite a few that come that are in their sixties and, and approaching 70 . The last person that we would probably seen about seven or eight years ago, we had someone who had a stroke and we had to get him into a nursing home
[00:15:07] And before the nursing home could take them, we had to get a team in the, well, when I say we, I mean, I just let the social workers and that know, and they've been in and done education there. The nursing staff might have been okay, but in actual fact, the backup staff, the people that bring meals and all that stuff, it becomes a big issue - just even going into a nursing home now - because none of them should have lived this long.
[00:15:37] Should they? That was it. Wasn't expected. And the education is still lacking.

Speakers: Drew Browne @unusualrisks and Patricia Kennedy
Transcript: (4 of 5) Families and friends and secret diseases

Drew Browne: [00:00:00] HIV and AIDS doesn't just affect individuals. It also affects families, friends, and those carers who work so closely with them. The atmosphere of secrecy and fear around HIV and AIDS in the eighties and nineties often distressed families to breaking point. So how did they survive?
[00:00:24] Patricia Kennedy: [00:00:24] They survive this where the greatest difficulty.
[00:00:28] Because it's not something that can talk about. And that is why the volunteers became very close and are still and out the blue, I'll get a message for someone that I haven't heard from for 10 years, because you're with the families at a really stressful time. I can remember a situation, a young man and a friend who hadn't seen him in years and years heard he was a dying and he was an only son that it was, uh, a son and a daughter.
[00:01:02] And this guy gave this, this friend gave him this beautiful apartment to share it. He was away a lot. It was a magnificent place and he had a bedroom for himself and his mother came to care for him. His mother would not come near him. And she would not cross the bedroom door. She would stand there and cry.
[00:01:27] And here was me not much younger than her, and here would be me catering for their son. Unfortunately, the young men who would also sharing that care with me, used to really resent the mother, because they couldn't understand that. These were young men that are now all dead and who couldn't tell their families, but they couldn't understand the mother being there, but that's how bad the fear was.
[00:01:57] And I can remember just the date before he died, he wanted a hair cut. And were in the kitchen and one guy, young gay guy, with the virus, he was a hairdressers and he came to cut the hair and I'm holding the guy's head up. He was adamant. He wanted to sit in this chair and get his haircut. I’m holding his head and other ones holding his shoulders, the guy's trying to do the cut,
[00:02:23] mum's outside the door crying, now the young guy died the next day. And I was at the bed with him and he asked me to hold him. And the minute he died, his mother run across that bedroom and took him in her arms. And some of the young men that were there, the young carer that was there, the two of them.
[00:02:50] One of them said to me, ‘Why couldn't she have done that two minutes earlier?’ And I said that to him, she's going to have to live with her for the rest of her life. So, I mean, when we thought a bit about the hair cutting, she was crying. We were laughing, because if you didn't laugh, you would have cried and that's not what he wanted.
[00:03:12] So there were a lot, eh, really sad times.
[00:03:16] Drew Browne: [00:03:16] Another hard hitting aspect of the HIV and AIDS epidemic in Australia, and the world over, was the passive transmission of the virus from mother to child. Pat saw many such children during her years as a carer and has some poignant insight into how they, and their families, coped.
[00:03:36] Patricia Kennedy: [00:03:36] The children take a lot of their attitude from the parents and that’s when the character of the parent comes across. There would, I cared for one little girl whose parents were stressed, but they were practical and she was going to live as normal a life and she. So they were on a property
[00:04:01] She had a three wheeler, bike motorbike thing - should be all over the place. Climbing trees, just a real tomboy and allowed to live her life - where there was another one that the mother took the attitude that she's entitled to experience growing up and that so she were seven and eight and nine years old
[00:04:25] She would have a little bra and panties, she would have on make up, she would have high heels. And she was a miserable little girl, because she wasn’t a woman. She was a little girl. So a lot the kids, I can remember at one of the kids camp sitting with this little boy, little blonde guy, and he was trying to teach me how to do ‘UNO’ it’s a card game, trying to teach me that and I’m as thick as a brick of course, and he had the virus and he said to me, ‘I can’t die yet.
[00:05:01] So do you think I could live another couple of years?’ And I said a settler hope so why? Because his parents had the virus; they had been drug addicts, were drug addicts, and he said, ‘I can't die before them because he will look after them?’ So kids, thats when, you know, kids can be so gutsy and a lot of the, the children that died,
[00:05:30] the parents that if they had two parents, this, the marriage didn't survive because there were just so much stress and, and men grieve different from women and men react different from women. So you have a whole lot of turmoil going on. And when there's other kids involved as well, you have the siblings seen all this, and it's fairly common.
[00:05:55] I think even with children with cancer or any disease, The siblings get jealous of the sick child. Ian had it to a degree his younger brother, because Ian would be in and out of the hospital. What do you do when a child is in the hospital? You take presents, you buy them things, you go out to, and the other kid feels neglected.
[00:06:19] So you have all that normal stuff going on. And tearing the parents apart, as well as the fact that the, the siblings don't understand the full story. So how did they survive? They survive the best. Some of them don't.
[00:06:45] A lot of the children that got HIV, yes a lot got it mother to daughter or mother to son. A lot got it through transfusion. But there used to be years where they’d say, ‘You're looking after the innocent ones’ and the innocent ones were classed as children or people that had it from transfusion.
[00:07:07] Personally I don't think that is an innocence. Nobody asks for this virus. So it's not a big guilty or whatever. So I think with the children, that discrimination doesn't apply. Usually, most people knew what the children had. It wasn't hidden the same. It would be hidden to a degree, you’d find that with the little girl Eve, in New South Wales, who had the virus and wanted to get into preschool, couldn't get into preschool.
[00:07:43] And the family ended up, the mother ended up going to New Zealand. That was very public. There'd be others that would maybe be less public, but the majority of them, it wasn't a deliberately hidden thing. A had involvement with family where the mother had died and the father and the aunt was actually caring for the children in that partnership and the, um, the little boy that had it and she got hell
[00:08:18] from the authorities, DOCS and everything got involved simply because she was quietly given the kids his medicine and didn't tell the school. And at that stage, nobody was telling the schools or wherever, because you know, people like to Blab – end of story. And they like to big-note themselves.
[00:08:39] If they think they've got something then or know something that somebody else doesn't so at that stage, they didn't tell the schools and she wasn't and she got hell for that. So people all handled it differently.
[00:08:56] Drew Browne: [00:08:56] when HIV was first found in the Australian community, the sensitivities and complications surrounding the diagnosis and treatment were enormous regardless of who you were or how you got it.
[00:09:07] And that was without taking into account any cultural considerations. How much of that did Pat encounter.
[00:09:14] Patricia Kennedy: [00:09:14] Culture plays a big part in this, and I'd need to see that culture applies even to white Australians, because you would get, people would say, oh, in Africa, the Africans don't want anybody to know because, … or the Filipino or whatever culture, the Asians, because in their country, they would have been ostracized.
[00:09:40] They would have been put out in a camp somewhere to die, but it's like that with a white Australians. It was like that as well. And I had a carer who cared for a man who was Tongan and this man needed to be in hospital and he wouldn't stay in hospital because when he was in hospital, the family would ask why he was in the hospital>
[00:10:05] His friends would ask why he was in hospital? So he stayed at home with his partner. And it was really funny because the volunteer I had that would go to these man was a little Dutchman who brought, who had raised his own family and he was a lovely man and he traveled quite a bit, never drove a car in his life, he had to travel quite a bit by train, to go on his shift.
[00:10:32] So they did seven in the morning so that the partner I could go off to the North Shore to work and he'd be there all day, and he hit on the marvelous thing. He started learning a bit of the culture and he would take all these different games with him so that they could play games. They could play cards and everything else.
[00:10:52] And that's the way that man lived his life till he died, because he couldn't go to hospital because his family might find out in hospital what he had. Sad isn’t it.
[00:11:07] Drew Browne: [00:11:07] According to the UK based International AIDS Information Organization AVERT, the first recorded case of HIV and AIDS in Australia was in October, 1982 with the first death occurring in Melbourne, seven months later. The diagnosis of HIV in Australia reached its peak in 1987 with numbers falling respectively in the years thereafter.
[00:11:30] However, Statistics on morbidity, give no real insight into the actual death rate and what that might have looked like in the community. Pat puts it into perspective amongst the politics of the time.
[00:11:44] Patricia Kennedy: [00:11:44] We lost in one stage, at one stage for the first June to the end of July, we lost 28 people. Now this is 28 people who we were caring for at home, not in the hospital, not in a hospice, but caring for at home - cleaning shit, cleaning vomit, doing what had to be done.
[00:12:10] And that was in a very short period. And I was on top of that time, they were trying to get rid of me because I was a straight, becoming fairly aged woman who was non-positive and I wasn't popular. And I was very … I’ve got a big mouth. It's just part of me so in among all this, in an actual fact, I was shredding paperwork just recently
[00:12:40] And I came across letters where they were um, they were trying, doing things to try and get rid of me. And one of the things they've brought up was for a low client list I had at that time. No mention that we just lost 28 people. That was 28 young people who'd died - 28 funerals. And that was a joke as well, because when I first got involved, they had come out
[00:13:09] with this rule. All the funeral parlors were telling you that they bodies had to be put in a led coffin. You'd looking at about $20,000 then. And it was just utter rubbish. And I went through different funeral parlors and found a guy and said now these people that are dying of no money, or very little money.
[00:13:37] And they certainly can’t afford a led coffin. He said, that's rubbish. It just, the body needs to be bagged. And any sort infectious disease, tuberculosis, anything, they have to be bagged. So he gave me a guarantee that he would give us an elegant funeral at minimum cost, which he did. And for years he actually, I gave him the business
[00:14:04] and, I would tell the families, if they would involve the partner or wherever, and this, this is it you can shop around if you want, but that's the way we had to go, because you had a lot of funerals.

Speakers: Drew Browne @unusualrisks and Patricia Kennedy
Transcript: Good friends like the Bobby Goldsmith Foundation (5 of 5)

Drew Browne: [00:00:00] Pat’s organisation relied heavily on fundraising and donations. It was a continual struggle to maintain the fundamentals of providing respite care. And the intervention of other friendly organizations was sometimes necessary to make things happen. Pat considers The Bobby Goldsmith Foundation as her first friend and later the AIDS Council of New South Wales
[00:00:27] Today known as ACON. However, in the case of ACON, Pat found out that sometimes ‘friends’ don't do exactly what they say they're going to do.
[00:00:38] Patricia Kennedy: [00:00:38] At the beginning, the closest friend to me was The Bobby Goldsmith Foundation. And they had a man who worked with them, Mark Teagum and he was a wonder. To me, he was a hero.
[00:00:53] He was Mr. BGF. If someone needed a washing machine and he would get the washing machine and would bring it from the city and it would hump it up the stairs himself. He was Mr. BGF and when we moved into the house, we’re in just now, the Nuns and Brothers had been running it and we'd been providing volunteers.
[00:01:19] And when the church decided to give it away, they would convalescent respiring care, we’re looking for a place, we’ve very little money - fundraised money - so that we could give social support and advocacy. Somebody having a problem with Centrelink, somebody having a bother with housing or whatever but we could deal with it,
[00:01:39] we actually provided some of the care in that house. They had a house in Blacktown, and we worked together very closely. They supported me with fundraising and stuff like that. So when they were going, we designed we’d get in touch with the, the landlord and we asked him if he would hold the rent for six months till we move in.
[00:02:07] And we got one of the other organizations to come in and take over respite care was really, really important. If they couldn't get respite care they got sent to this time to a hospice and they'd be convinced that they were dying and they would die.
[00:02:26] So we asked him, we could take over - the landlord said Yes, he would hold the rent for six months, not to worry, but we'd know furniture. And we needed it. That's what we would offer to the convalescent respite care so we needed to have beds, Comfortable bedrooms. So I got in touch with the accountant for the, the big paper, whatever you call them, for the Bishop.
[00:02:53] And I was told, ‘Oh this is all assets now’ We've put labels on stuff that go on here. Then I said, look, we need it. We can't do this without it. And you know, I knew where the assets came from, there were donations. Yes. ‘But once they were donations, they became assets. What can you offer us?’ And our said, we can't offer really anything, but I'll trust you
[00:03:24] to do the Christian thing and a hung up on him. And in actual fact, I spoke to Katherine, Ryan probably said, who the hell is this bitch? You know, we're dealing with, and she actually said to them, if you're going to give this to anybody, that would be the best place to give it. And they walked away and left everything.
[00:03:48] Now we took over with six months money, nothing else and no funding, but with the idea that one of the bigger organizations, BGE, ACON, Health wherever would support convalescent/respite care would come in and do it. And BGF said to me, Pat, I think you should do it. We will support you with it. So them and the Positive People, I think it’s called Positive Life now and ACON were going to support us.
[00:04:30] So by the time it went from there to us our first meeting with Health, ACON had decided that they were doing the care outside. Care in the Home that wasn't going to be a room and that they should get this. So they got this chunk of money, they got the car, they got the worker and we were left with the rest to run it.
[00:05:02] So by the time it was first talked about to when we'd gone to that first meeting, the whole thing had changed. ACON went and got of course, because they’re very powerful, their hierarchy where all budding politicians that seen themselves making a name for themselves. So they thought it and ironically, six months later, nearly everybody they got that needed convalescent / respire care, they gave to us.
[00:05:36] So then I said to the Health Department, who of course were like that with ACON, you need to relinquish this funding because they've got the money we’re doing the work. So I was told if you want, you can tell them that you want paid, for the people that they're are sending. So I told them right, you can give me so much of that
[00:06:00] funding back or I’ll charge you on a daily basis. And they said, ‘oh well, you can charge us in a daily basis’. So I did at $50 a day, which was peanuts to what they would have got charged in any facility. So, they had to do that for a while pretty soon, but they've done that for a while. So, the organization that helped us support them was actually The Bobby Goldsmith Foundation, which again, was relying on fundraising like us, not with government funding.
[00:06:33] And that's how we survived.
[00:06:36] Drew Browne: [00:06:36] Pat was involved in both the organization and provision of care for people with advanced AIDS and was often found holding the hand of a young person as they died. Often due to the stigma and secrecy of the time, there was nobody else in the room, even though clients under her care, never died alone,
[00:06:55] Pat has an interesting philosophical take on the fall moments of human life.
[00:07:00] Patricia Kennedy: [00:07:00] If family wen’t there, we were there. In fact, I spent a lovely night with a young Vietnamese man who was told he was going to die. And this was a young man that had come to this country, had family here, Aunts, worked for them, branched out
[00:07:23] he wanted to do his own thing. Worked, got himself a little car. Him and he's a friend had a couple of drinks and they were running around a roundabout in the car. His friend was tickling him and it hit a post and there was an accident and they both ended up in hospitals. And the young man recovered after a couple of weeks, he was charged.
[00:07:52] He was told he didn't need an interpreter, that he could bet a lawyer that would represent them. He ended up getting sent to Silverwater Jail for three years. He was raped repeatedly when he was in prison He got transferred to Parklea (prison) for his own security. He was a tiny lovely little man. He ended up in Westmead Hospital.
[00:08:21] They reckon that it wasn't going to survive long. And I was asked if he could come to stay with us until he needed to go to the hospice. Cause we had not a hospice. People didn't come to have a place to die. They came to get some respite, to get some social interaction and, and to get some education and to get some advocacy.
[00:08:45] Cause when you've got HIV you're voiceless because you won't talk out, you won't tell your family. You’re certainly not going to make a noise in the community. And, um, when he died, his mother came here and I really felt for his mother, because this was a big thing for the family being kept quiet. He was in Westmead and had somebody's giving them this fountain and it was just this tiny little thing.
[00:09:20] And then died was with him all at night. And he said to me at one stage that he was dreaming that he was back in Vietnam and he could hear the water coming down the little and waterfall, and it was going into the river and there were some flowers there. And when he went, I didn't even know he went so quietly.
[00:09:46] So I think everybody dies alone. Even when you're with them, they die alone. I think that's the way it is.
[00:09:57] Drew Browne: [00:09:57] In our last questions to Pat, we wondered if receiving the Medal of the Order of Australia (OAM) was a welcome acknowledgement of a work. And whether she had any messages for the community and the young people of today.
[00:10:09] Should they consider her a hero of her time?
[00:10:12] Patricia Kennedy: [00:10:12] Getting the Medal of Australia, no it doesn't make me a hero. And I didn't want it, but more than anything, I accepted it because I'm nothing without the volunteers. I was nothing. I could do nothing. It was the volunteers that made it happen. And a good percentage of the volunteers were positive people.
[00:10:37] Or people who had a family member that was positive or just your normal everyday housewife that wanted to help. Unfortunately, they don't get Medals. So that's why I took the Medal, and I was honoured to take it for their sake. If I had to give a message to the Australian community I would say, and this is across the board, not just with HIV is we're all part of the community
[00:11:11] and unless we can respect each other and help each other, we won't survive as a community. It's a battle. And that comes across when you dealing with something like HIV, don't be so judgmental. Just be caring and educate yourself; know what you're talking about, and then you can make decisions.
[00:11:42] If I had to talk to generation Y today, I would say, sex is very free and easy. Nowadays kids as young as 13, 14, 15 are having sex. They start off thinking it's love and then move on very quickly. So for young, especially young women nowadays, it's very easy at the time that they’re in their early twenties they’ve had multiple partners that the beginning you think is sex is something separate that they don't need to make a big commitment to
[00:12:17] And they can pay a terrible price. So to them all I would say, educate yourself and practice safe sex.
[00:12:27] Drew Browne: [00:12:27] And finally we asked Patricia Doolin Kennedy, O.A.M just how she would like to be remembered?
[00:12:33] Patricia Kennedy: [00:12:33] I wouldn’t have a clue. I'm loud mouthed. I like to say it as it is. I can remember one of the young men involved here, cause he's young compared to me when you know, I got him just to do massage and that was a big thing.
[00:12:50] A, because people with HIV were treated like lepers. So, for someone to give them a gentle massage was a huge thing. So, I'd like to be remembered as somebody that cared, rather than just all the organizations that remembered me as just one big pain in the ass.
[00:13:15] Drew Browne: [00:13:15] This has been The Story of Patricia a Grandmother's Fight to Do What's Right - Battling HIV Stigma in Australia.
[00:13:29] Thank you for listening.