Guest Editorial
Research, language, politics, complacency and AIDS
Peter G Kerr
School of Nursing Studies, University of South Australia, Underdale campus, Adelaide SA
PP: 094 - 096
Article Text
In the thirteen years that I have been working with communities as they reel against the devastating impact of HIV disease, I have come across some of the most wonderful people. I have also had the misfortune to come up against some of the most disturbing thinking and behaviours in my life. It is still possible to sit in international meetings and hear suggestions that population control problems will disappear due to HIV related deaths. The exponents of such propositions have little regard for the consequences of their 'solution' as it affects populations and nations as a whole. Widespread death from HIV within a country undermines national confidence, destroys family settings, erodes community support structures, deepens national debt, places enormous strains on national economies, and can actually increase population problems in the short term as families move to replace their dead children.
The neglect of women as a critical research focus for HIV disease impact, continues to place treatment services for women behind those of men. This is taking place at the same time that women are proving to be at greater risk for HIV infection during unprotected sexual intercourse, and at a time when women are identified as having the most rapidly growing number of newly acquired infections. Women are discussed extensively at HIV/AIDS conferences, however those women predominantly researched, are sex workers who are overtly or covertly referred to as 'vectors'. In adopting outdated public health thinking, sex workers are seen as a source of infection and therefore worthy of research in an effort to protect their male clients and the 'general population'.
Recently published books (The AIDS Manual, Albion Street Centre, 1994) on HIV disease, continue to place sex workers in positions that encourage increased marginalisation and discrimination. The use of the term 'prostitute', encouraging readers to link sex workers with the spread of the virus, and drawing comparisons between sex worker and HIV infection rates in Australia and Asia, helps to draw the lines between 'them' and 'us' on both moral and cultural perspectives. Work in Africa, is in fact identifying one of the major risk factors of HIV infection among women to be the fact that they are married, not that they are sex workers. This is now being replicated in Asia. When will research efforts turn towards men in an effort to find out why they behave in ways that place themselves and their sexual partners at risk?
Through all of this, nurses with the largest number of professionals in a single health-based profession, stand at the front lines and watch. Nurses watch, and at times assist, as men focus their research attentions on disenfranchised women under the banner of public health. These outdated, public health policies continue to follow militaristic style missions to seek, identify and destroy the source of the virus, while 80 per cent of the global population of persons living with HIV do not know of their infected status. In the majority of cases, these people do not have access to testing and, if found to be living with the virus, will not have treatment access either. Given limited amounts of funding, and told by the HIV/AIDS juggernaut to implement HIV/AIDS programs, governments look around for the most cost effective way to appear to implement HIV/AIDS control measures. Female sex workers, who are already powerless, provide the ideal source of cheap and easily obtainable statistics to throw under the wheels of the juggernaut. The result however, is that the sex workers themselves are often thrown under the same wheels, being used as scapegoats, being further disenfranchised and further disempowered. On gathering their data, some governments have then moved to place forward claims that their testing of sex workers has shown low infection rates, thus retarding the likelihood that sex worker clients will adopt condom use, and placing the sex workers in a greater risk of infection. The spiral has inevitable consequences.
Nurses have for years worked alongside medical practitioners who utilise curative rather than preventive practices in the main. The argument for the 'remedicalisation' of HIV/ AIDS is a call by the medical profession to take back the power from social sciences, which have successfully argued for the primacy of social education in the face of the HIV/ AIDS pandemic. Education can be provided by many people, can be liberating, emancipatory and can lead to sustainable healthy behaviours. Curative measures are profitable, can only be applied by certain groups, reinforce dependency relationships and remove self control. Nurses are in a perfect position to assist in the education of their clients with regard to positive behaviours which protect them from HIV infection. When was the last time you instructed a client in the benefits of safer sex and how to use a condom? More importantly, was your last sexual experience safe? The recent abstract pro-forma for the 1995 HIV/AIDS Conference for Asia and the Pacific to be held in Thailand, was entirely research driven. This pro-forma used a positivist, scientific and medical frame. For developing countries, which have relied on aural traditions over the centuries, conference presentations based on research only and deny discursive presentations, restrict the participation of the representative population-thus further alienating that part of the world with the largest populations of HIV infected persons.
Throughout the relatively brief history of HIV disease, storytelling has been a most powerful means in getting the messages across. Now, in a country with a tradition of storytelling through dance, voice, art and puppetry, a conference on HIV disease which gives primacy to Western dominated positivism, removes the voices of those who can make the difference, the people. Nurses also have a powerful history of teaching through anecdotal storytelling. This too is under threat as increasing numbers of professional journals turn their editorial favour towards academic style writing and research publications. While both of these are important, so are the stories of challenge, success, failure, joy and heartache as nurses go about nursing. In our efforts to remain closest to our clients, we must retain the ability to talk with them and at times for them. Storytelling must remain one of the tools of the profession. To relinquish storytelling is to relinquish the connection with people, and at times, truth. Nurses must continue to question the agendas of conference organisers who request that abstracts be presented in a format which predetermine those who can participate in the sharing of knowledge. The critical question which asks, 'Who benefits?' is a very good one to start with. This same critical question can be asked of research itself. As I read through the HIV/AIDS research conducted on nurses by nurses, I see that nurses are continuing to express fear of persons with HIV infection, to express the opinion that persons with HIV infection should be cared for in specialist HIV units, and to express negative views towards those living with HIV infection. I have not often seen researchers go beyond the presentation of their outcomes, moving to action. Nurse researchers require caution so as not to fall into the very same barrel as other researchers, intent on researching for agendas other than action and emancipation. The drive to complete masters and doctoral works may prove an ability to read, research, tabulate, analyse and document, but the nurse researcher who actually takes action and makes a difference either during or on completion of their research, will receive my vote everytime. There are enough HIV/AIDS research results about nurses' negative attitudes towards persons living with HIV on the shelves. It is time we took these results off the shelves and began constructing projects to implement actions that assist nurses come to terms with these fears and opinions. It is time that nurses were helped-so that their client groups can be provided with appropriate nursing care, regardless of the setting.
For some time now I have kept a secret thought. A thought so volatile that I have had to maintain silence. A thought that could not be released without words of explanation. While there would be nothing better for those affected and infected by HIV disease to have a cure right now, a cure which I would be so happy to assist in distributing, I cannot help but think that if a cure, a 'magic bullet', had been developed in 1984, the year HIV was discovered, we would have learned nothing. My greater fear, is that following all of the deaths, all of the suffering, we have still learnt very little.
If in fourteen years into the pandemic, nurses are still calling for isolationist units for persons with HIV disease, then we are still calling for quarantine measures. The problem is, however, the quarantine is for the safety of ourselves and not for the good of the client. In Africa and Asia where the virus is widely spread, persons with HIV infection are nursed side by side persons who are HIV negative, in both health care facilities and the community. I maintain that the virus in Australia causes some fear, but the greater fear is of the people who carry it. In Africa and Asia, the largest populations affected by HIV disease are heterosexual, while in Australia the largest population affected remains bisexual and homosexual men and injecting drug users. The provision of care to individuals is not made easier however, it is made more freely, when the person affected could be yourself. In Asia and Africa, nursing staff providing the care, are themselves often HIV positive because of the infection levels within their country, not as a result of occupationally acquired infection. Empathy is a powerful facilitator of understanding.
Has nursing in Australia been so protected from infectious disease over the past decades that we now insist on working within an environment that provides a 100 per cent guarantee of safety, or do nurses in Australia find it difficult to work with clients who are different? HIV infection and AIDS is not the problem. The problem has always been with us. HIV and AIDS is like a fine laser beam; picking up the deficiencies, the faults, the divisions and also the compassion within our systems of care. Nursing is attempting to address some of these deficiencies and faults, but nursing is in danger of losing its voice through losing touch with the general population. In the move to become more professional, let us not also lose the ability to speak with and for the people. In our efforts to create nursing knowledge, let us not lose sight of those we use in the creation of this same knowledge. In the climb to social acceptance, let nursing climb its own ladder and not the ladder of someone else. In our efforts to provide safety for ourselves and others, let us not create quasi quarantines, thus removing the opportunity for nurses to grow and learn; while, at the same time, effectively marginalising already disenfranchised people.
Finally, before I step down from the soapbox, while nursing has been ready to embrace feminist ideology in education and research, nursing has not been so ready to utilise its ideal position to assist women in general to question the power imbalance of health, and in particular with regards HIV infection and AIDS research and treatment services. Nurses could readily take on critical research projects that work with women, for women, research projects which will illuminate and emancipate. I look forward to the next ten years as the balance shifts across the globe.
eContent Home
