I first knew shame as a little girl sitting on a cassocked knee under a priest’s gaze when I was told that women were ‘carnal’, like a flavour of ice-cream for grown-ups. Like Benedictine. Women were something forbidden and unknowable. A bit shameful. Like that mysterious enamel jug hidden in the bathroom cupboard with the spout in the bottom.
I had a front row seat to the tragedy of HIV/AIDS that made a shipwreck of the gay men’s community in the 1990s, when at 33 I was the first woman appointed Editor of Sydney’s biggest newspaper for queers.
The Sydney Star Observer was the journal of record for the gay community and was an influential and widely read newspaper—devoured as much for the Personals at the back as for the news up the front. Each AIDS death notice took up the space of a business card and there were the blackest of times in 1993 when two full pages of obits were published—a graveyard in newsprint. One gay man wrote of them as ‘shadows on the dance floor’, while I remember my address book with its crossed out names of the dead, mainly young men, as if it were a time of war.
I saw up close my dear friends monstered by a society that wanted to blame us and shame us for suffering from a sexually transmitted virus. Like Lepers and Plague Marys before us, there were those who wanted sick gays to be quarantined. And so we danced through the streets at Mardi Gras, with frangipani in our hair, when love in the time of AIDS was more vivid because it was so brief. When summer’s lease had all too short a date.
Lurid Ads on TV had showed Death coming to get us, a Grim Reaper figure (carrying a bowling ball!) evoking the Black Plague. Or was it gays coming to get straights, in bowling alleys? Yes, that damn homophobic anti-AIDS ad won awards, which is the best commentary on the worst of times. The antidote to gay shaming was of course, gay pride. And visibility.
Brett died with his back covered in painful herpes lesions. He used to be so particular – a style queen. Curly headed and sturdy with red bib-and-brace overalls showing off his muscly bronzed arms, he was a Pretty Boy. Until AIDS. Then ‘Absolutely Everything Darling’ went wrong with his body. As he wasted away this gorgeous ex-pat Kiwi who shared my love of *Pinky Bars was at first disgusted by the raft of symptoms that plagued his body. Then ashamed. We talked about how us girls got more used to messy bodies, with menstruation and childbirth. How those dear boys would have loved to have lived long enough to be troubled by their prostates.
Nasty men in collars claimed AIDS was God’s vengeance on sodomites. Why God is so selective has always puzzled me? If he’s gnarly about gay sex, where is his vengeance on priests who rape little girls and boys? They live, seemingly, long and untroubled lives in many cases: ‘Cup of tea, Father?’
So you smoked?
I see and smell shame every time I am in a waiting room full of people dying from lung diseases. The ex-Navy man who started smoking during the war when he went to Japan, cigarettes were part of his ration. The kindly woman who was a nurse and says she should’ve know better. The serene yoga teacher with Copd and lung cancer. Since dead.
At the hospital rehab I pass fat people, (well I can’t pass them, actually, the corridors aren’t wide enough) and they give way to O2 tanks and smile at me encouragingly as I do the dreaded 6-minute walk test.
‘Did you smoke?’ some will ask, as they too stop and catch their breath, yet no one asks them how many biscuits a day did they scoff? No, they have heart disease. They have diabetes. It’s bad luck. Whereas we are bad people.
‘Did you smoke?’ is the question most often asked of us with Copd. And we hate it, according to a new survey presented at the 1st Global Copd Patient Leadership Conference in Madrid this November.
Except for a few variations due to our differing healthcare systems, the same core issues were experienced around the globe, according to those attending the historic Copd Patient Summit.
A ranking of our concerns:
- Stigma / shame and blame issues.
- Low levels of public awareness.
- Late diagnosis.
- Limited resources and funding compared to other Long Term Conditions.
- Little research compared to other LTC’s.
- Perception and portrayal of Copd as a disease of the elderly yet over 50% of the world’s Copd population are 40-65 years old.
- Low levels of patient advocacy / activism/ involvement.
- Difficulties and inconsistencies surrounding air travel with oxygen.
- Lack of media attention / interest.
- Poor access to Pulmonary Rehabilitation—even where available it can vary in quality, be far from home, often long waiting lists etc.
We feel the stigma of our disease in other ways too. Copd is the 3rd largest cause of death in the USA, so there must be a lot of of research, right? Wrong. Currently there are only 780 ongoing trials for Copd. This pales in comparison to the over 41,000 trials taking place in cancer research. Copd attracts very little research money compared to other, more popular diseases like breast cancer, heart disease and brain tumours. It’s like pandas versus Tasmanian Devils versus vultures, which I have a growing affinity for, and which may be my totem animal.
What if you had a sky burial and nobody came?
Vultures in Asia and now Europe are 99 per cent extinct due to ingesting diclofenac, a vet drug used routinely in cattle which is lethally toxic to vultures alone. Unlucky are the vultures who have got in the way of squillions of dollars being made by the feedlot industry. Big Beef, meet Big Tobacco.
In the end, we can refuse to feel shame for getting sick from a legally available product that, when consumed as directed, kills half its users. Governments talk about trust, but can you really trust any government that lets the Tobacco Industry kill its people – for a price. Governments should feel shame for the blood money they extract by way of cigarette taxes.
I have previously described having Copd as being like coming out (see post ‘Coming out with Copd)’. It’s not easy to wear oxygen in the street. And like coming out, you do it over and over again. But if we are invisible, we will fail to get help.
In facing the adversity that is Copd, the first rule of survival is to know that the disease is fought in the mind ahead of the body.
Shame will make it harder to accept healing as your right. To expect a cure to be found. To ask for our fair share of research dollars. To be treated with the same respect as anybody else with a terminal illness. Be out and proud living with Copd.
For Brett . . . Cadbury Pinky ‘Kind of Kinky’ with Marc Hunter, NZ ad 1976.
• See the UK’s Vanessa Smith’s report back on the Madrid conference in her great blog, Copd in Focus.
Click on the title if you want to say something.