Taoiseach’s seminar attendance a step towards removal of HIV stigma

We have always defined ourselves by who we are and by who we are not. We do it by race, colour, creed, weight, disability, accent — and illness. Particularly illness.

The morning after Bertie Ahern was re-elected taoiseach, he was busy. Very busy. But the organisers in the meeting room in Buswell’s Hotel were confident he would turn up to launch their new website. They weren’t sure precisely when.

The speakers at the morning seminar were warned that they might be interrupted, mid-speech, when the Taoiseach arrived. Because he would definitely arrive, the organisers said. He felt strongly about their issue and had supported them from the start.

He arrived late. He was apologetic. But he was there.

The issue being addressed was the stigma against those with HIV. A stigma, according to speakers at the seminar, which not only leads some doctors and dentists to refuse treatment to those infected, but allows mortgage-providers to reject them, too, effectively making many of them homeless. This, in turn, causes many who believe they may be infected to avoid the tests which might confirm their status: what isn’t on their records can’t hurt them, although failure to get treatment early may compromise their survival.

Stigmatising those with HIV is the current manifestation of an unchanging human reality. We have always defined ourselves by who we are and by who we are not. We do it by race, colour, creed, weight, disability, accent – and illness. Particularly illness. This is a self-protective mechanism, rather than an intrinsically evil instinct.

In biblical times, lepers — those suffering what we now call Hansen’s Disease — were forced to carry a bell to warn others not to come close to them. That bell, combined with the visible physical damage done by the disease to its sufferers, led to a shuddering stigma summed up in one word: leper. A stigma carried down all the days, down through the centuries, so that we still make comments like “He treated me like a leper.”

Stigma against a disease and those infected with it is always strongest at the outset, when the illness is new and terrifying, random and unexplained. It gives the uninfected the illusion of control by allocating blame to the infected. Blame is a coping mechanism. If it’s your fault, even though I can’t fix it or control it, I at least feel better about myself.

All of these factors influenced the media handling of HIV.

When doctors registered that a new ailment with strange common symptoms was affecting — and killing — gay men in cities with a high population of gay people, media did the modern equivalent of the response to leprosy in biblical times. It sensationalised and segregated, most potently by the use of the phrase “The Gay Plague”.

People infected with HIV, in that first decade, suffered as grievously as had those who died in historic epidemics. They were forced to conceal their illness. . . if they could. Those with visible lesions were forced to conceal themselves.

The Media went on to make heroes of the carers. Nothing wrong with that. Medical staff who overcame their fears of a half-understood transmission system certainly showed courage and commitment. Partners and mothers who nursed the sick demonstrated what love is all about. But making heroes out of them permitted the rest of the population to continue to blame those infected for their own plight, while reverentially praising the carers.

The second phase of reportage was started by a number of factors, including the pulling together of groups within the gay community to fight back. Also influential was the film, Philadelphia, which reduced the stereotyping and caricaturing of the infected.

That second long phase of media coverage was characterised by a huge rise in the level of understanding and information about the virus. It also, however, featured the use of the phrase “innocent victim” to describe someone who got HIV from a blood transfusion, as opposed to getting it from unsafe sex or a tainted drugs needle.

The fightback against this categorisation was fierce and effective, forcing media professionals to question a key — albeit often unconscious — element within prejudice and discrimination: its justification by blame-attribution. Editors, writers and broadcasters developed a new sensibility about culpability in disease causation, whether that disease is lung cancer attributable to smoking or high blood pressure contributed to by a bad diet.

The media are now in the third phase of coverage of HIV. Combination therapies have — in the western world — turned HIV from a killer with obvious physical symptoms allowing instant identification of people infected with it, into a chronic ailment to be managed, like diabetes.

That has reduced the stigma. (It has also reduced some of the real and present fear, with results seen in Friday’s release of figures about rising infection levels within some swatches of the population in this country.) HIV is increasingly covered as a disease devastating Africa and creating a generation of orphans. Over there.

The media can contribute to (or reduce) stigma in several different ways.

The first is by selection. When something slides off the media agenda, it’s sometimes treated as a natural phenomenon, over which nobody has any control. But that is to remove from the media a moral imperative to inform and enlighten.

In relation to HIV, it’s fair to ask the question: has the media set out to stimulate public interest in aspects of the story that would normalise it and reduce the stigma attached to it?

Another way the media can influence public attitudes is by the use of terminology. The danger is that campaigners can become too attentive to the use of individual phrases, developing Terminology Touchiness.

Terminology Touchiness is where a group gets so focused on incorrect or unacceptable terminology that the campaigners become an irritant to the media, the body politic and the general public, rather than serving as change agents. They are seen as nagging whinges, always warbling on about the use of “politically correct” terms.

Whenever we’re trying to roll back a stigma, we need to concentrate on changing the behaviour and attitude of the dominant group, rather than simply parsing the terminology employed. Parsing the terminology is simpler and easier. Changing the behaviours and attitudes is more complex and difficult, but has to be the ultimate objective. Terminology is often a symptom of a deeper ailment, and just as you don’t treat jaundice, even if it’s obvious, but seek to cure the underlying disease, so we need to cure the rationale underpinning stigmatism.

Bertie Ahern’s attendance at the launch of the Stigma campaign sent a simple message to those present who are HIV positive. It told them their prime minister did not see them as second-class citizens.

Now, all they have to do is convince a few powerful professional groups to share his stance…