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PLWHA empowerment: some guidelines
David Patient and Neil Orr. 19 December 2003. A posting from Af-AIDS ([email protected])
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Everywhere we turn, we are hearing the word Empowerment: People living with HIV/AIDS need to be empowered; Woman need to be empowered; Empower children .. It seems that most people need to be empowered!
But what does the word 'empower' actually mean, and how do we go about turning this concept into transferable action?
Let's look at the origin of the word. Although it is a contemporary buzzword, the word empower is not new, having arisen in the mid-17th century with the legal meaning to invest with authority, authorize. Shortly thereafter it began to be used in a more general way to mean to enable or permit. From our experience, real empowerment is the transference of an external locus of control to an internal locus of control: providing the desired opportunities, knowledge and skills to a person (or community) so that they are in a position to implement their own decisions concerning the quality of their lives. Empowerment is about a person claiming their own personal power to choose, think and act, versus being reliant upon external sources - culture, community, traditions, church, government, co-dependant relationships and family.
At first glance, this process appears disruptive of the prevailing order and social structures. It appears to be contrary to the notion of cooperative relationships. However, there is typically a growth period of releasing dependency, moving into independence, which then matures to true - and lasting - interdependence. Suppression of this process leads to stagnant dependency, which ultimately leads to apathy, fear of change, absence of creativity and initiative, and the eventual destruction of the society itself. Individuals and groups that are 'unempowered' - i.e., operate within a relationship structure of dependency upon external authorities - have little resilience in the face of change. Their ability to adapt and innovate is severely diminished.
In our Empowerment training - which we have conducted over the past ten years for in excess of 12,000 people in Southern Africa - we do a process where we give each person an opportunity to state why they feel they deserve to live. For the most part, people give many reasons to want to live. Only 10% of any group will consider their life worthwhile enough to save, while the remaining 90% focus upon the value of other people's lives. This may seem altruistic, but the process is set up in a manner where more than one life can be 'saved'. I.e., it is not a 'you-or-me' choice situation.
This is no different from Dr. Bernie Segal's experience when he approached a group of women with advanced breast cancer. They had all been through chemotherapy, surgery, and a host of other treatments, but to no avail. He told them that he could help them put their cancer into remission with a non-medical program that had a proven 50% success rate. Of the group, a mere 8% came forward and asked to enrol. What happened to the other 92%?
This evidence has forced us to ask some disturbing questions, such as 'Why do so many people not have the drive to live? Why do they not value their own lives enough?'
Developmental and social workers operate under the assumption that 'everybody wants to live'. This is not true, for many people: If your life is tedious, repetitive, boring and has no future that you want to work towards, then why would you want to extend your existence out any longer? For what? The sad part is that this applies to most people, regardless as to any potential life limiting disease or illness. It is not enough to offer skills, resources and knowledge - if any of these resources are to be accessed and utilised, we must first create a context of a desirable future. People need to know that life can be different, better, worthwhile, and that they can be part of that.
At the 10th International AIDS conference, during a presentation concerning long terms survivors and long-term non-progressors, it was noted that the primary factor that set these individuals apart from the rest of those living with HIV, was one simple factor: All of the people studied by the likes of Gallo and Levy (NIH and UCSF) showed a very clear sense of Self. These people were not reliant on external sources for their internal validation.
Having interviewed many long-term survivors over the years, we have been able to identify a dominant psychological profile of such long-term survivors, which we use as the basis of our empowerment processes:
1.A clear sense of self: These individuals are not reliant on other people's for approval or validation. All reported that they would much rather be respected than liked. This does not mean that they consider themselves as being 'better than', nor more worthy than others. It simply means that they have a clear sense of self, and thus are able to identify their own value, and consequently the unique value of others too.
2. Independent imagination ability: They have a sense that their survival is possible, despite the evidence to the contrary. Many indicated that they did not get hooked into what the experts have to say about their prognosis. For a glimpse of their possible future, they look inside, not outside. This does not indicate denial - they are aware that they could die from their infection. This ability to imagine a future that is contrary to the dominant belief regarding survival is one consequence of their sense of self as a unique entity. For the majority of PLWHAs, dying commences with the diagnosis, when their future dies. Long-term survivors did not give up on their future because of their HIV prognosis. One woman who had very little in the way of resources planted an avocado seed with the intention of being alive seven years later to eat the fruit. She imagined herself alive in 7 years, and she is still alive.
3. A positive, yet realistic approach to their disease/infection: They are not typically frozen into inaction by set-backs, nor are they prone to denial-based behaviour. Instead, they focus upon the realities at hand, and then take proactive steps to change the situation. It is for this reason that they have little tolerance for the victim/sufferer/apathetic mindset. They regard it as demeaning, and factually untrue.
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