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What Makes Us Human?
The Story of a Shared Dream
By Jean-Louis Lamboray Balboa Press
Copyright © 2016 The Constellation ASBL
All rights reserved.
ISBN: 978-1-5043-6372-3
CHAPTER 1
AIDS Competence Should Spread Faster Than the Virus
The year was 2004. The HIV epidemic continued to expand as the number of new infections and the number of deaths steadily increased. The efforts of the international community to stop and reverse the HIV epidemic were not bearing fruit.
About fourteen thousand people were meeting in Bangkok for the International Conference on AIDS to share their experiences and to set future directions. Yet a few hundred kilometres away in northern Thailand, local communities had already taken action and had curbed the epidemic. They were not alone; similar stories were being enacted in Uganda and in Brazil. However, most people at the conference went back without learning from these stories.
This chapter describes the failure to incorporate the lessons learned by local communities into a global policy, which set the stage for the foundation of the Constellation.
The inhabitants of Uganda, Brazil, and northern Thailand shared an experience that set them apart from other countries. In 1997-1998, I spent a year and a half in Phayao, a province of northern Thailand, to understand how HIV prevalence had fallen from 20 per cent among young men in 1992 to about 6 per cent in 1997- This was the only the population in the world that had pushed back the epidemic to such an extent. What was the secret?
I invited the main actors in Phayao to reflect on their experience. They were supported by a team of Thai epidemiologists, economists, and anthropologists. Their conclusion, endorsed by Thai authorities, was, "It is necessary to provide services to prevent AIDS, to care for it, and to reduce its impact, but these services are not sufficient. The key resides in the actions of individuals, of families, and of communities in responding to the scourge." Three friends, Dr Masami Fujita, Dr Agnes Soucat, and Dr Aree Tanbanjong, suggested the phrase "AIDS competence" to mean the use of their abilities by communities to overcome the epidemic.
These findings were not unique. Communities in Uganda shared similar experiences with anyone who wanted to listen. They described coming out of denial, making AIDS their own business, and acting locally to deal with it. For example, thousands of people living with HIV organized themselves into associations. They did not hide their HIV status from society. In Uganda, a mother could talk to her daughter and tell her that her aunt had died of AIDS. As a result, Ugandan society acted together to respond effectively.
In contrast, in neighbouring Kenya, people had heard about AIDS, but they did not discuss it as a problem that concerned each family and each community. Although information campaigns were initiated, condoms were distributed, and care services were established, these were done without this discussion, and the country could not deal effectively with AIDS. As Michel Serres says, "Only what is spoken exists."
In 1998, I returned to UNAIDS headquarters in Geneva and shared the report on the Phayao experience. I expected that my colleagues would respond enthusiastically and that UNAIDS would formulate policy recommendations based on the report. But my report was shelved! I continued to promote the idea of AIDS competence even though Michel Sidibe, my boss at the time, relayed orders that I stop using the term. Regardless, the idea had made its way outside UNAIDS.
A few months later, I attended a high-level session on the theme of religion and AIDS chaired by Michel Sidibe during ICASA (International Conference on AIDS and STDs in Africa) in Ouagadougou, Burkina Faso. Most speakers related how they'd adopted AIDS competence as their organization's idea of success, and so Michel had no choice but to use the term in his summary.
The next day, African friends organized an impromptu meeting so that I could share the Phayao experience and its implications for policy, and I spoke about AIDS competence without any constraint. The excitement was palpable and the vision was shared, but there was no road map for implementing it.
Back in Geneva, I was not alone. For six years, from 1998 to 2004, an informal team grew around the idea of AIDS competence, and together we sought ways to stimulate local responses.
I had met Ian Campbell, and his colleagues Alison Rader and April Foster from the Salvation Army in Africa, in 1989. These pioneers were already counselling local communities in Zambia to address the issue of wife inheritance, a sensitive subject, but it was possible because of their caring attitude toward people with AIDS in the community.
In 1999, Ian was in charge of health services at the Salvation Army International Headquarters in London, and I was able to mobilize a small budget to support the development of national facilitation teams for local responses to AIDS. Faby Ngeruka led the team in Rwanda, and Sue Lucas rigorously documented these activities.
In northern Thailand, I met Dusit Duangsa and Usa Duongsaa, who from the outset had adopted participatory techniques to assist communities. Here too I enabled a small amount from UNAIDS to help them document their efforts.
But I was not satisfied. I wanted to enable the sharing of experience by local actors across borders and cultures. But how? Geoff Parcell's book on knowledge management within British Petroleum (BP) gave me the answer. The company had remodelled its knowledge-sharing mechanism. Rather than call an expert based in London, production teams now called on each other to resolve problems, and they documented their experiences for others. This was what we needed at UNAIDS.
When Lord Browne, BP's boss at the time, realized that his company's knowledge management system could save lives, he immediately authorized Geoff's deputation to UNAIDS. Within UNAIDS, I could count on the support of Marlou De Rouw, who had worked with me since 1998, and on Luc Barriere-Constantin. Marlou had a unique ability to create a safe and friendly atmosphere in virtual networks, and Luc extended his unstinting cooperation.
Unfortunately, we were unable to influence global strategies. National plans and budgets continued to be limited to prevention, care, and impact reduction services; no attention was given to facilitation of local responses. The experiences of Thailand, Brazil, and Uganda — — the only countries known to reverse the epidemic in the 1990s — — were not taken into account. This international policy situation remains today.
It wasn't easy for me to keep going in this context. Ian called regularly with encouragement: "Hold on while you can, because your support on behalf of UNAIDS helps us in the field. The day you throw in the towel, we'll understand."
One day, Luc found me in tears in my office. Ian had called to say that the Zambian officials were delighted to learn that UNAIDS was supporting national facilitation teams for local responses. But this was not entirely true because the support was coming from me, not UNAIDS, and only for a few teams. The action was isolated and was making no impact on policy. I did not know how much longer I could hold on. I felt increasingly uncomfortable pretending that UNAIDS supported local responses.
The coup de grace came in June 2004. The executive board of UNAIDS was meeting in the basement of a five-star hotel in Geneva. The hall was full. In the first circle, country delegations gathered around the executive director and the board's chair. Representatives from civil society, UN agencies, non-governmental organizations (NGOs), and observers sat in the second circle.
Five months earlier, the executive director had secretly instructed that the funding to the AIDS competence program be cut. However, thanks to Michel Sidibe's intervention, the program would survive for a few months n order to continue, it would now need the intervention of board members, of representatives of my country (Belgium) and of France, who appreciated our work.
On the morning of the meeting, I found out that the Belgian representative would not speak because the executive director had exerted pressure on him to stay silent. Would France speak up? Here is wat the French representative stated: "The delegation of France expresses its satisfaction in the AIDS competence program. In Lyon, in late 2003, we had the opportunity to appreciate the exchange of experiences by representatives from 14 cities across four continents. We would welcome a statement by the executive director on his intentions regarding this program."
Endless minutes passed. Other delegates raised other questions. Then it was the executive director's turn to answer. Would he respond to the French representative? The lunch hour had passed, and the board was ready for a break. Some members were already closing their briefcases; others had started typing on their BlackBerrys.
Suddenly the executive director spoke. "Oh, yes, there was also the matter of detail raised by the representative of France. We assigned a senior staff member to the AIDS competence program, but before I grant him a penny, I want to proceed with an evaluation."
That was the kiss of death. In the UN, calling for an evaluation of a program was the first step to closing it down. It was time to recognize that we had failed. We were not dealing with a personality conflict that could be resolved by changes in staff. The causes ran deeper, and we needed to adopt a different approach to achieve our purposes. After consulting my informal team members, I decided to leave UNAIDS and continue the journey outside.
In December 2004, our team met in Geneva to discuss the formation of an association to promote and support the spread of AIDS competence. There were twelve of us: Alison, April, Dusit, Faby, Geoff, Ian, Luke, Marlou, Sue, Usa, me, and Alex. Alex became our first executive secretary. The perennial fog in Geneva blocked the view, but our vision was clear: AIDS competence should spread faster than the virus. Our association would be called the Constellation. Local communities who mobilized themselves to address their own concerns would form the stars and illuminate each other for more effective responses. Facilitators from the Constellation would stimulate and connect local responses.
Our vision might be clear, but what specific processes would we offer to interested communities? Our friends from the Salvation Army insisted that we develop human capacity, but we were not sure how we would translate this intent into reality. We also wanted to include the wealth of expertise of our Thai friends. Geoff's experience centred on the use of a self-assessment tool that enabled communities to take stock of their AIDS situation, identify their own resources, and use them for action.
We gradually united around a fundamental principle: appreciation of our own strengths and the strengths of others. In our interaction with communities, we would not analyse deficiencies and needs simply so that we could come up with solutions. Rather, through our dialogue, communities would become aware of their own strengths, and as a result, they'd learn to use them to respond to their own issues. They would generate their own vision of success, identify practices that would enable them to achieve their vision, analyse their situation, take action, assess their own progress, adapt actions, and share their experiences with others. We call the combination of this process of systematic learning from action the community life competence approach.
Initially, we thought that Constellation would work like a non-profit consulting firm with Alex as the business manager, and a body of coaches who would train facilitators in the communities that were willing to take responsibility to address AIDS. We planned to sell our services to interested partners, and to help them form a team that could use our approach. In response to my letter explaining the reasons for my resignation from UNAIDS in July 2004, the Aga Khan Foundation invited us to explore collaboration. In January 2005, we started training facilitators in Mombasa, Kenya, from within the Aga Khan Development Network consisting of banks, hospitals, schools, madrasas, media groups, and more. Dusit and Usa opened the doors of the University of Chiang Mai, where they taught at the Faculty of Education. The latter gave us a room to install Alex and an assistant who would support the Constellation, together with Marlou, who remained in Geneva.
But the business model did not survive for long. The association of Congolese facilitators, RDCCompétence, went public for the first time in March 12, 2010, and introduced its work to national authorities and donors. Judith, the brave president of the association, gave the floor to Sandrine Ruppol before closing. Congolese facilitators call Sandrine Mother because it was she who first helped their development when she directed a project to fight against AIDS in the Democratic Republic of Congo (DRC) from 2004-2007; the program was funded by the Belgian Technical Cooperation. Although Sandrine was not included in the session's program, Judith wanted to acknowledge her pivotal role.
Sandrine was the first to use the term "cleansing" to describe the impact of appreciation. "I was not prepared to speak, so I will speak from personal experience. I was born in the DRC; my parents were born in the Congo, as well as my grandparents. You can understand that for years, I've seen you, my Congolese brothers and sisters, through a set of thick lenses. Since I changed my outlook towards you and came to appreciate your strengths. My vision has changed; my whole life has changed. I cannot underestimate the cleansing power of appreciation."
Sandrine's experience matches ours.
We used to think of ourselves as agents of change, but we have become the subjects of change. The energy for our own change comes from the communities to which we relate. To do this, we had to accept (as Sandrine did) exposing ourselves to the cleansing power of our positive outlook on others. But what is there to cleanse? How does that power work? And under what conditions does it work? We will explore these questions in the following pages.
CHAPTER 2
How Much Will You Pay Us?
Mbudi is a village downstream from Kinshasa. The Congo River and its rapids roar nearby. We are no longer in the city, but we have not quite reached the bush. Local residents gather in a garden belonging to a local development association. I have come with Congolese facilitators and am the only white person in the group. We are seated in a large circle; some mango and avocado trees provide shade. Behind us, we see an empty shed meant for pig farming.
After the introduction, we gently enquire about the community's dream for itself. Ideas sparkle. People want to improve the care provided at the nearby health centre, launch income-generating activities, breed small livestock, and grow vegetable gardens. An old woman says, "As for me, I no longer need to dream, as my dream has come true." We're all startled, and someone asks the lady to explain. "Yes," she adds, turning in my direction. "Don't you see this big-bellied white man with silver hair? Have you noticed the big bag he laid beside his chair? It must be full of dollars. Let us invite him to explain his project, and all will be well for us."
Kinshasa is suffering from SOPEKA, or "SOmbelangai, PEsangai, KAbelangai" — "Buy this for me, give me that, offer it to me!" The Kinois might have diagnosed the disease, but it is far from cured, and it extends far beyond Kinshasa! In 2005, Constellation facilitators offered to work together with community members in a Ugandan village in order to roll back malaria, the leading killer of children in the region. The villagers' response? "How much will you pay us?" When the facilitators replied that they had no money, the villagers said, "When NGOs come to raise AIDS awareness, there is always money. So why do you keep it all for yourselves? Go on your way." The logic is evidently absurd: one needs to pay communities to use their own resources to keep their children from dying of malaria.
At the heart of this tragic transformation from people perfectly able to fend for themselves to becoming passive recipients of various donations, there lies the way international funding mechanisms are organized. For a development official, the biggest nightmare is to end the fiscal year with unspent money. The remedy is simple: organize a workshop, call in participants, pay for every expense, and add a daily bonus. Participants are happy because they can top up their salary, and officials are satisfied that they have spent the budget. In some poor countries, it is not uncommon for senior health officers to spend more time in "training workshops" than on duty. Because these daily bonuses are called per diem, the Congolese even call these officials "perdiemistes". In the real world, people pay for their education; in the development world, they are paid to get educated!
(Continues...)
Excerpted from What Makes Us Human? by Jean-Louis Lamboray. Copyright © 2016 The Constellation ASBL. Excerpted by permission of Balboa Press.
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