30 May 1994
Rosedale, Australia
Dear Ian,
It was such a pleasure to hear from you. Particularly since, as usual, we seem to be seeing and thinking the same things. I have recently had two brief trips to Zambia. How desolate that country will be one day. Unless... Both times I got out into the villages but the second trip I went down to Livingstone to see the work of three UN Volunteers working to strengthen community based responses to the epidemic.
One of the images that I will long carry with me was sitting in the courtyard of an urban health centre in one of the poorest compounds talking to the home-based care team that one of the volunteers was training and working with. When we arrived, it was the day of their normal weekly meeting, none of the women were yet there. We were told that they would be late since they had gone to a nearby compound to collect food for the work that they had been doing in a public works programme. This food, we were told, was all that many of them had to keep going. They were all volunteers from the surrounding compounds. They all had families of their own and each day was a struggle for survival. Yet they volunteered. And to do what must be one of the most depressing works of neighbourliness that exists: offering solace with little if anything in the way of physical support to the (mainly) AIDS dying.
The system was, usually, that when the neighbours heard that someone was sick, they told or sent a message to the Counsellor attached to the Health Centre. After she (almost invariably; in the home-based care team, one man had been trained but had not ever shown up after -- this needs some reflection) had visited the house, she would add the family to the list for the care team. With a system such as this, the carers are not helping the HIV infected, but only the dying, the terminally ill. And usually those who are caught unawares by the dying, without preparation. The team told me that often they find the whole family starving, with no thought having been given to how those surviving the dying person will survive. The team has little to offer. Mostly they do not even have soap to wash the sick and themselves afterwards, no disinfectant, no food for the starving or protein supplements for the weak, etc. (This lack of support needs to be addressed within the programme.)
But what they do have is extraordinary. They have courage and compassion. By just turning up and crossing the threshhold, they challenge, and encourage, the rest of the community to do likewise. They ensure that the family is not humiliated and neglected but rather remains part of the community. They help start the essential process of changing attitudes towards the HIV infected and dying. Once inside, they bring concern and care. They are someone to talk things through with. For everyone, the sick and the well, the spouse with her or his fears and the children with their fears. They take over, for at least two short periods each week, the care of the sick, the cleaning up of the diarrhoea, the washing up, the making of the beds, etc.
Who are these women? What motivates them to do this? I do not know the answer to the latter question for that would have required more time to listen to and understand the answers than I had there. But I asked them who they were. Mothers all of them, as I recall. At least one recently widowed. All of them having trouble coping themselves, few of them with much education, all of them searching for ways to earn a little extra money. I wondered if the answer to the second question included an element of what you call a future need, an investment in the care of others now in the hope that there will be someone there to care for you when your turn (inevitably, one feels is the extent of the despair) comes. I talked about these women at the recent SWAA regional conference in Zambia.
Thus, even in this micro example, one sees the linkages from care to change through and by the community, to a network of concern and compassion that links present giving to the possibility of future needs, to a process of community mobilisation, that you talk about in your letter, an approach that I too believe can be put in place in both low and high prevalence areas.
In many ways the UNV programme and the Salvation Army are similarly placed: at community level, where these processes of care and change must be set in place. At present, the Salvation Army has the critically important advantage of your team there to give them guidance on how to do it well. The UNVs need similar support if they are to do it effectively and sustainably. There are others also that we must identify.
The uniqueness of the Chikankata and similar programmes is that the person at the centre of this process is not always terminally ill, the condition with which they went to hospital may have been treatable, and so the teams work with both the HIV infected well and with the dying. In the former case, the person may be well enough to start planning for his or her illness and death, to start planning for their children's future, to start to pass on their knowledge to others. There is an urgent need, in Africa in particular, to help people to start talking about all these things, to ensure that they have access to voluntary counselling and testing services, so that the testimony of the infected and well can be heard, their needs addressed and the quality and length of their life lengthened so that they can continue to nurture and raise their children and to contribute productively to the economy. Apart from anything else, Africa cannot afford to lose prematurely their knowledge and skills and their children need them to be there with them for as long as possible.
The other issues that you raise are ones that concern me deeply. The terrible pain, loss and grieving associated with this epidemic and the fact that it is cumulative and that the future will be much worse than the already often unbearable present. And the deep need to be able to continue to love and to express that love, even if the loved one is infected. Remember Berlin. Although we must do everything in our power to try to ensure that loving someone is not an inevitable death sentence for the spouse and a curse for the children of this love. We must make sure that such people can talk through this choice, have access to good quality and affordable condoms and that the psychological and emotional problems associated with using them in every act of lovemaking during the relationship can be talked through. (I revised and expanded some of my Berlin thoughts on this recently, in Mombasa, at the first conference of the Network of African People with HIV and AIDS. The reaction of those attending, men and women each in their own way, has given me much food for thought.)
Your words and insights on hope are, again, critically important. This, and the associated emotions of empathy, compassion, laughter, respect, love, empowerment, etc., that is, the will to live, are all that will carry people through the terrifying trauma and pain that this epidemic carries within itself.
How much of the afternoon (and evening?) of June 8 can you and Alison give to me/us? There is so much to discuss. If the Regional Bureau is in agreement, I would also like you and Alison to meet with the team doing the evaluation of the Africa Regional Project which will be in town that week for their briefing. For these are the ends of the Project. How can one evaluation progress towards them?
I am very much looking forward to seeing you. Thanks for writing down your thoughts and reflections and sending them to me. I was touched. Some of your observations brought tears to my eyes.
Being in Australia, by the way, is wonderful. Love,
Elizabeth