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69 OCTOBER 2004
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HIV and AIDS in Ireland: Being careful about the language we use

Niall McElwee

When I was a teenager, HIV/AIDS entered into the public consciousness in Ireland. We, like so many other countries, had a profound media scare around this “new” illness and what to do with people who were presenting with clustered symptoms. The government did not know what to do. Firstly, it concentrated on at-risk peoples (homosexuals being the main category) and then on at-risk activities (needle-sharing populations). We saw ads in the newspapers and on the TV. We saw doctors in white “space suits” treating patients or cleaning out hospital wards.

There are various arguments put forward as to whether or not HIV/AIDS was genuinely a disease of the 1980s or if it had been around a lot longer. Indeed, my mother was a nurse practising in the UK in the 1960’s and is convinced that she encountered a patient there with what we now call HIV/AIDS at that time.

Some brief statistics
We have no room for complacency in Ireland. The total number of HIV-positive cases in Ireland as of 2002 was 3,009. The total number of reported AIDS cases was 731. The total number of reported deaths due to AIDS in Ireland is 369. If I take this just one year (2002), 54.4% of cases were females with 45.3% male with the mean ages at HIV diagnosis in males being 34.0 and in females 28.1. One of the statistics continually quoted is that 51.1% of newly-diagnosed cases (186 persons) were born in sub-Saharan Africa. Thus, many youngsters still believe that this is not a disease for them and are no longer as concerned about safe sex as they were for a time.

Language is important
One thing I would like to draw attention to (I seem to have been on this hobby horse before) in our thinking and practice as Child and Youth Care workers is language. Being diagnosed as HIV-positive is not, at all, the same as having AIDS. Yet, I continually hear both students and practitioners referring to an individual who has “AIDS” when, in fact, they mean is HIV-positive which may, or may not, develop into AIDS at some later stage. Please, please think about this.

What is particularly tragic about AIDS is the shame and humiliation this illness often causes amongst individuals and family members when every ounce of energy is required for fighting the illness. It is not uncommon, for example, for patients who have AIDS to inform people that they have cancer. I know of a recent case of a friend of a family who was diagnosed with cancer and went to a hospital in Dublin for treatment (which also treats HIV and AIDS) and very soon a rumour had spread that he had AIDS.

The damage and hurt we can do to one another never ceases to amaze me. I say this not because I think there is any shame in being diagnosed as HIV+, but because the reaction of many people, despite millions of dollars in trying to educate, is still woeful.

In any case, I would ask that instructors, lecturers, practitioners and supervisors take some time out to reflect on the language they use when discussing HIV and AIDS. I have seen several postings on the CYC-Net asking about the ethics of informing staff members of a service user who is HIV+. I would answer simply that we should always use safe work practices so the only reason a staff member might need to know if a particular service user was HIV-positive is around medication. If we are safe and consistent in our practice we are safe and consistent.

Finally, I would remind readers that anyone with a life-threatening illness deserves our support and goodwill. The language we use is crucial in brightening or darkening a person's day.

The International Child and Youth Care Network
THE INTERNATIONAL CHILD AND YOUTH CARE NETWORK (CYC-Net)

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