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Opening the safety net

Interview with Clare Penny

In many countries - New Zealand, Australia, Canada - AIDS support organisations work hand in hand with right to die societies (who, in turn, have learnt not to be HIV-phobic!). Not so in Britain. The needs and demands of people living with the HIV virus include trying to choose the time of one's own death. Conservative to the core, such needs are ignored by the politically correct organisations set up with government money to "help" people with AIDS.

There is this myth that people don't die in pain...

So it came as a pleasant surprise when a reporter from Positive Times rang the VESS Office. Unlike many mainstream groups, the people behind Positive Times get no government funding: the only source of income is from advertising in the paper itself. Clare Penny, the editor, spoke not of patients she had known but of friends. Her involvement is grass-roots; her commitment is tangible. She can be in her office from ten in the morning till the following midnight. She believes in getting results that make a difference, and the paper is notable for its head-on approach to tackling difficult issues with candour and a zest for living.

"There is this myth that people don't die in pain. My stepmother died of cancer - very painfully. I was close to her and nursed her through, but it made a deep impression on me. But with AIDS there is more capacity to die in pain - there are so many diseases that a person with AIDS might succumb to. I've seen a person where the bones were actually pushing through the skin."

Positive Times ran a general article on euthanasia and followed it swiftly in the next issue with a second one, Dying to Live, which focussed more acutely on suicide and the work of VESS. It featured a picture from the Pepsi advert and a caption: Life to the max: a right which should not be exclusive to Pepsi-drinkers and skydivers.

The article explained that the option of suicide can serve as a safety net to those living with the virus, that planning your exit had more to do with living than with dying.

"I know several people who have attempted suicide with paracetamol," said Clare. "One friend took 60 and survived." Paracetamol is not only very unreliable, but often causes terrible internal damage. Clare was full of praise for the work of VESS with Departing Drugs. "There is a great reassurance in knowing how to commit suicide. Often, of course, when the time comes, the person is physically incapable, and so friends make suicide pacts. They talk in the pub about assisting suicides, but they worry over the legalities."

Without a change in the law, everything has to be very secret. No safeguards, dignity lessened, and the danger of failure through inadequate knowledge and backup and/or prosecution if caught. "The law failed Dr Cox big time. People like that shouldn't be prosecuted!"

Many "voluntary" organisations are plagued by power struggles for key positions. Not so Positive Times and its companion The Pink Paper. Clare is about to step down as Editor and carry on as a medical science / health correspondent.

Some people find that planning their suicide as a contingency plan can actually be a very life-enhancing experience, even if most people who consider it don't actually carry it out.

Why? "Because I feel strongly that the editor should be an HIV positive man - after all, that's what Positive Times is about." Nice one, Clare! We salute your integrity. Hopefully AIDS/HIV support groups and right-to-die societies will learn how to learn from each other more as the campaign continues. The testimony of a man suffering from AIDS was instrumental in the recent Ninth Circuit decision (see cover story), and in Australia, where the first ever law on euthanasia seems set to come into force this year, AIDS support groups lobbied parliament and referred members to VESS to obtain drugs information.

Some people find that planning their suicide as a contingency plan can actually be a very life-enhancing experience, even if most people who consider it don't actually carry it out. In the words of Positive Times: "Somebody once said that the thought of committing suicide had helped them through many a bad night. For most people with HIV or AIDS considering it, it will remain just that - a thought. Planning a suicide may have a lot more to do with living than with dying."

Interview by Chris Docker. Dying to Live appears in Positive Times Issue 14, April 1996. Positive Times is at 72 Holloway Road, London N7 8NZ, Tel 0171-296-6000.

© 1996 Chris Docker
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