November 15, 2012
Give or take a year or two and depending on your personal history, we've been living and dying with HIV and AIDS for 30 years. Every year on World AIDS Day, we remember those who fell. However, in this morally topsy-turvy world, we don't always remember those who picked up our men, wiped their arses and their tears and unselfishly gave help, humanity and dignity during what for many were last weeks and months. We damn well should because without the thousands across the world who gave their time when nobody else would, a lot fewer of us would be around to talk about it today.
I'm talking about people who saw a need, rolled up their sleeves, swallowed their fears, ignored the stigmas and opposition, even from some of those they were nursing, and just gave.
They were women; some lesbian, some straight, but all committed to making life easier for those in their care. For gay men it came as a total surprise; we didn't expect it of them and hadn't exactly seen them as comrades in sexual equality during the years when hedonism ruled and seemed never-ending. Yet when hospitals were isolating people and leaving them alone to die; when families had abandoned their sons and when nursing staff refused to treat AIDS patients, or gingerly entered the room in clothing and masks more suited to nuclear fall-out; many women decided that this was too big to ignore. They ignored the hysteria and paranoia and recognised the tragedy of what was happening. Thank God they did!
Many regular nurses refused to treat AIDS patients out of fear, or because their families and friends pressured them out of it. It wasn't such a cut and dried issue as you might think, especially in the early days when so little was known about AIDS. Fear played a huge role, especially amongst those who had never known a gay man and knew nobody who was sick with AIDS.
However, as soon as the devastation within the gay male community became apparent, many nurses formed groups to fight discrimination of people with AIDS and groups to support the victims and their families. It was at that point that thousands of lesbians decided to volunteer, or join nursing as a profession. This wasn't just in North America; it was in Europe, Australia and many other areas too. Without necessarily realising it, certain groups of women responded to a universal need; which was quite remarkable if you think about it.
More Information: Nursing (From the Encyclopedia of Gay, Lesbian, Bisexual, Transgender, & Queer Culture)
It was female nursing leaders who vehemently opposed mandatory HIV testing, a political move aimed specifically at gay men. They also encouraged the setting up of support systems, home help and hospice facilities for the dying and generally underpinned the social safety net when most health authorities just didn't want to know and were refusing funding.
Perhaps not surprisingly, many lesbian organisations were not sure about all this. They argued that gay men had offered little support to lesbians over the years and were often little more than contemptuous in social situations. "Would gay men have done the same if AIDS had affected women the same way?" they argued. It's a moot point; we'd like to think we would have but we'll never know because it turned out so differently.
At that moment, many gay men were traumatised. They were seeing their friends dying at astonishing rates; they were shocked and fearful, angry and frustrated and stunned into inactivity as people often are in war situations. Fortunately certain men like Larry Kramer had the presence of mind to organise opposition to Reagan-esque indifference, and many took to the streets to demand action for their dying friends; but it was women who took the leading role where it counted: on the wards and at the bedsides of men with horrible afflictions and little future.
Perhaps even more surprising were the different "sorts" of women who made such an effort. There are too many genuine heroines to mention in an article here but the following at least represent the movement as a whole. My apologies for leaving out so many but that doesn't diminish my awe and respect for people who did so much more than I would ever have dared.
Take for instance Mrs. Judith Peabody, a wealthy socialite and philanthropist, who "volunteered" for good causes much as her fellow ladies-who-lunch did and still do. However this was a lady who took her "duties" seriously and turned up one day at the office of Gay Men's Health Crisis and volunteered her services in support of people living with AIDS. Many patients and their families may remember Mrs. Peabody, clad in Yves St. Laurent, bringing meal trays into the rooms when the general nursing staff left them outside. This was a lady who walked the walk. She was criticised of course and many in her socialite circles took the "How could you!" attitude rather than joining in. Nevertheless, she raised a lot of society money and influenced a segment of society that had the resources to make a difference. That made her special.
More Information: Into the Breach, Clad in Adolfo
Then there was Maureen Cassidy, of Fairfield, who started a Buddy Program, matching around a hundred volunteers with AIDS patients in her area. She was a successful cosmetics executive who gave up her job and salary to help others in need. It stemmed from losing friends and even her brother to the condition but her driving motive was something that we need so much more of today.
"I walked into a clothing store recently and a woman inside said she couldn't believe I worked with people with AIDS," Ms. Cassidy said. "She said, 'Aren't you scared of getting AIDS?'" Ms. Cassidy said she used each confrontation as an opportunity to educate people about AIDS.
Such was her influence that doctors, business professionals, elderly people and housewives saw the bigger picture and willingly volunteered when others buried their heads in the sand.
"What bothers me most is how AIDS is still such a stigma -- to see somebody who is a kind, warm person, be treated badly by their families," Ms. Cassidy said. "All of a sudden they get this disease and they're treated like lepers and it's very difficult to watch that." She spoke of a young woman with AIDS whose parents moved her to a back bedroom in their home and served her with paper plates and plastic spoons and forks. "I'm always amazed at how many people are still terrified."
Now that is something that has barely changed in many places in the years since she said that in 1989.
More Information: Woman Gives Up Career to Help AIDS Patients
Another special person of the times was Margaret Bausch, a nursing student who decided she wanted to work on an AIDS ward in 1990.
"I'm gay and I wanted to put back into the community, you know?" she said.
After she'd graduated in 1991, she asked to be transferred to the HIV/AIDS unit at the nearby St. Joseph's Hospital. Now this was a special organisation in itself in that it was founded and run by the Daughters of Charity of St. Vincent de Paul. Bear in mind that this was a traditional Catholic organisation and charity. This was still a big deal in those days, and the fact that a Catholic institution would go out of its way to be supportive of AIDS patients helped others to overcome prejudice.
"The Daughters of Charity were actually very, very supportive of our mission there," Bausch said. "In fact, they sponsored us in the Gay Pride Parade twice. Once, we had T-shirts made up that had the big AIDS ribbon on the front and it said, 'St. Joseph Hospital -- Caring for Our Community' on the back."
Margaret worked amongst many other lesbian colleagues whose names may be forgotten, so symbolises a significant number of selfless and generous people. However, in 2001, she was diagnosed with multiple sclerosis and had to stop working at St. Joseph's, just as the newer HIV drug regimes were emerging. The irony of her illness was not lost on her because it was her own T cells that were attacking her nervous system to produce MS. Her story is fascinating and I can't improve on her own words but it's definitely worth following the link that follows to read more about her life.
So how did she cope? "I ate and drank a lot," she said, laughing, but then grew quiet. "It was hard. I mean, we used to have a calendar and we'd write the names down of people when they passed away, you know? Sometimes, there were some months where we'd know, like, 50 or 100 people that died. It gives you kind of a perspective about quality versus quantity of life. And I wouldn't say you ever get blasé about death, but you really do come to understand that being dead isn't the worse thing -- that there are worse things than being dead. It was hard."
More Information: Margaret Bausch: HIV/AIDS Nurse Reflects on a Life of Caring
Then there was Joanne James, who was the head nurse of one of the first AIDS wards at the Harper Hospital in Detroit. She along with other nameless colleagues worked long and hard to create a support network for the nurses themselves. Hospital administrators and the public at large often underestimated the effects on the nursing staff, who were caring for patients who were more often than not going to suffer terribly and then eventually die. Joanne James recognised that in order to provide better care on the wards, the nurses needed to be supported and cared for themselves. The psychological effects of so much suffering must have been devastating at times. Her groups became part of the Association of Nurses in AIDS Care organisation; and since her death, a "Joanne James Award" is presented annually to someone who has made a significant contribution to the HIV community.
We shouldn't forget the media women who brought the story to the public in an honest and hard-hitting way. The newspapers and television in those days generally reflected the political distaste for anything HIV-related and writing a story about AIDS wasn't always a good career move. In 1983, in the early days of the epidemic, Maureen Dowd wrote a piece for the New York Times that was brutally confrontational for most of its readers and for that reason, won no awards and almost lost Maureen Dowd her job. It was eventually published a few weeks before Christmas, at the front of the Metro section, but it was touch and go. The full article can be seen via the link below and will show how brave Ms. Dowd actually was writing such a truth at such a newspaper.
More Information: For Victims of AIDS, Support in a Lonely Siege
In Australia, the story was much the same. Many lesbian nurses worked at St. Vincent's Hospital in New South Wales and once again, when the general nursing staff refused, or was reluctant to care for AIDS patients, lesbian nurses stepped in and volunteered in significant numbers. One of those was Ann Maree Sweeney:
I started working with AIDS patients in 1989. I was 21 years old, Catholic, just out of university and just coming to grips with my sexuality. I had NO idea what I was in for. I experienced the depths of despair, but also the essence of love -- true love. I wasn't ready for the roller coaster, but who was?
That must have been the case for almost all the nurses caring for the sick and dying. How could they be aware? Men were losing all vestiges of dignity to the virus and being reduced to skeletal shadows of their former selves. These women had to care for people with a sickness that was entirely new and had physically very challenging symptoms and that must have been incredibly hard. The fact that they did it anyway ... sometimes words aren't enough!
Sometimes five men were dying in a week at St Vincent's. Eighteen-year-olds. Twenty-two-year-olds. It was awful. People were literally shitting and bleeding to death. Nothing we could do would stop it. Not to mention pneumonia, the blindness or the AIDS dementia process. But at the same time as the horrid virus was tearing our hearts out, dykes and poofs were rocking together -- partying, loving, caring and consoling. Our mates were dying, we were united. The poofs needed us strong women to do the dirty work and we were willing.
More Information: Lemon AIDS: LOTL (history of lesbian health care workers in New South Wales)
One of the nurses who worked during the worst years and is still working at the famous Ward 86, at San Francisco General Hospital, is Diane Jones. She has something interesting to say about how little attitudes have changed. On hearing that they are HIV positive:
"People still have the same reaction now that they did 30 years ago -- it's a universal reaction," she said. "The first thought is that they're going to die, the second is that they can't tell anyone and the third, if they're a woman, is that they can't have children. And none of those is true."
And she should know. How sad that all that incredible work to educate people about HIV, and how it can be treated in 2012, has still not permeated society so that stereotypes and stigmas are eliminated.
More Information: 30 Years of AIDS: Different Angles
Another direct reference to the work of Diane Jones can be found in an interview with Clifford L. Morrison for a University of California account of the AIDS epidemic and the response of the nursing profession:
Lesbian nurses had a totally different approach to it. Diane Jones was certainly one of the first ones, and one of those people that I will always hold in high esteem and will love forever. She can do no wrong in my eyes. They knew that they weren't at risk, even at that point, but they saw it as a bigger issue. One of the things that I think the public really wasn't aware of is that there was, particularly in this community, not a lot of cooperation, not a lot of good feeling between lesbians and gay men, because we were all competing for the same little piece of pie.
More Information: Still More on Ward 5B
It could be said that we haven't been grateful enough since, either. Not many gay men march for breast or ovarian cancer research; or fight for more recognition of the passive sexual infection of women, leading to disease and even infertility. Gay men aren't leading the fight against rape and exploitation either; but we should, because these are the issues that the other sexes are facing in 2012 and it should be payback time.
Let's just remember, once again, that so many women swallowed their squeamishness and fed, clothed, bathed and comforted AIDS patients during their worst days. They talked them through their traumas, did their laundry, cleaned up vomit, urine, faeces and blood-soaked clothes and sheets. We should be eternally grateful; these women should be lauded at every World AIDS Day gathering and given the due recognition they deserve.
This article is about the women at the time; this is not meant to demean the equal contributions of many men.
More information can be found here:
Why Gay Men Should Step Up for Women's Health & Reproductive Rights (An alternative feminist view)
Dave R. is a frequent contributor to TheBody.com and a lay expert on neuropathy and HIV, though he writes eloquently about many topics. He is English but has been living in the Netherlands since 1986.
Read more of HIV and Neuropathy: How to Avoid Becoming a Nervous Wreck, Dave's blog, on TheBody.com.