My sister, My grandmother and I- One family’s-Gender based response to HIV/AIDs in a post conflict society:
By Susan Mugizi Kajura.
I am an African woman heading a project that enables grassroots communities to impact on the quality of their lives through collaborative development activities in Uganda. Fourteen years ago I returned to my country after many years of political exile and I became involved in it’s reconstruction. Uganda was facing many challenges at that time and leading among them were issues of peace building and the HIV epidemic. To address these, the country’s leadership responded by creating space for dialogue and action both politically and otherwise. For the individual, this meant recognizing , utilizing and expanding on the opportunities created. Many Ugandans did so. We responded individually, collectively and emotionally; we responded in a manner that sometimes surpassed structured government, and non-government approaches. From our perspective we continue to grapple with the reality of a scourge, that in spite of our successes often seems like it just won’t go away. My contribution to the symposium would be from three areas where Aids has come into my life. Through my sister , my grandmother and my profession. When it comes to coping with HIV/AIDS in a post conflict society, every Ugandan has her story and following is a glimpse of mine.
My Sister:
5 Years ago my amazing wonderful sister Mirembe, died of AIDS. She was 33 years old, a mother, wife and a graduate of Edinburgh University in mechanical engineering. “Not a profession for girls, ” My father had said when she had first suggested engineering as a career. He should have known better, his remark became a challenge Mirembe couldn’t resist. The whole family was out of Uganda at the time, living where each of us could find refugee status. In 1981 Uganda was in political turmoil and it would be 6 more years before it was safe enough for each of us to begin trickling back. Mirembe returned to Uganda in 1987, and immediately joined a political cadres’ course intended for citizens willing to spearhead the nations reconstruction process. She learned to assemble and dismantle a gun and was a support and inspiration to a group of Kadogos (child soldiers) whom she helped rehabilitate back into the community. In 1989 Mirembe gave birth to her daughter and married a young doctor, 5 years later she wrote:
“I am a 32 year-old mother of two, a career woman in a competitive male-dominated profession and wife to a well educated professional. Everything should be going well, and so it is on the surface, but under this image of “success” lies the spectre of HIV:”
My sister had began to fall sick and in true Mirembe-style, she rose to meet the mother of all life’s challenges by sharing her experience in a self help booklet that would help others in a similar dilemma. As far as Mirembe was concerned there were people out there for whom counseling was not a solution or simply unavailable. In addition to this, there were people in the same situation as hers whose carers were not aware of the simple things that could improve the quality of life. In 42 pages, including cartoon-like illustrations, Mirembe chronicled her dilemma and experiences on a wide range of issues from sexual relations, nutrition, health care, dependants and future plans.
When Mirembe died, her project was shelved, even though among her future plans was the hope that her booklet would be published and copy-right proceeds set aside for the education of her two children. The edited manuscript she left behind remained untouched until a few weeks ago when this symposium sent out requests for gender-based responses to HIV/AIDS and gave me the courage to act upon my late- sisters’ wishes. In 2001 the solutions and information she offered are still relevant. 10% of Uganda’s adult population is still infected with HIV/Aids. In spite of our well documented achievements HIV/Aids is the leading cause of death among adults. It cuts across; the rich, the poor, the illiterate and the elite and even though her booklet primarily speaks to the urban African professional, it’s simple text, concrete advise and humorous illustrations lend themselves to contextual adaptations and translation.
The urban African professional will no doubt relate to the dilemma that faced my sister of “who and when to tell”. Will the news of one’s status affect career advancement prospects and test one’s core beliefs in the strength of friendship, she wrote. In her booklet Mirembe so poignantly pointed out 5 years ago, what still stands true today; “Despite all the education and public awareness in Uganda, there is still a lot of stigmatizing.” Her advise - “Do not expose yourself unnecessarily.” To the rural based African, where the problem is less about stigmatization and more about a lack of information and access to services, Mirembe’s booklet offers a gender- sensitive simple counseling guide. However, as with all reading material, to access it one would have to know how to read. In Uganda 53 % of women cannot read. And even if they could the booklet assumes the availability of a level of health care which is not available in many rural communities.
My grandmother:
The Aids Support Agency (TASO) an indigenous Ugandan NGO considered to have one of the best outreach support programs for people living with HIV/Aids, recently stated that one of the major challenges it faces today is “Increasing the availability of medical care in rural areas.” Safia Kikura my 90 year old grandmother who lives 80 Kilometres outside Kampala responded to the lack of HIV/AIDS medical care for her family by initiating a programme of her own. Safia explained that after caring for several of her dying children and grand children she realized the important thing was to keep them nourished, and administer the herbs they needed to alleviate their ailments. “I found this helped them live longer and when death came it was not as painful because they didn’t waste away.” Besides her house, Safia planted herbs for fever, chest infections, skin rashes and sores, and added passion fruit and pawpaw’s to her banana and maize plantation. “This is what has helped me look after my children. When they fall sick the cure is in my garden, when they can’t eat, they can at least take a little passion fruit juice. Clinics are far away and I cannot afford the treatment they offer.”
Safia’s personal convictions and beliefs about sustainability are vividly illustrated in the story she tells of an encounter she had with some TASO volunteers. “ A man and a woman, they had come to my home with condoms!, they were busy flashing them here and there , showing them to my children and grandchildren and encouraging them to carry on, so I chased them away with my stick. I don’t want those things for my children. They aren’t a solution . They are dangerous because they offer a false and soft way out and stop you from dealing with the real problem from within. I asked the TASO people what will happen when the urge comes and the condoms they are distributing are finished. Will people run the 10 kilometres from here to the TASO center? and what if they find you’ve run out!” My grandmother felt that the individual must be given every support to make that change from within. “Only a personal decision to take on one’s bodily urges and be stronger than them, will enable a person to cope with this disease and that kind of strength can only come from God”
Her daughter in law who has been living with Aids for the last 10 years agreed with this observation and attributed a large part of her ability to have coped all these years, to the inner strength she had found through her faith. “It helped me turn away from men, and brought me into fellowship with others who encourage me. I read my bible and it strengthens me. I’ve been called upon to witness to others about my status and give people hope. This has helped me a lot. I never knew I could talk and people listen and when they do, it affirms who and what I am and also I’m no longer afraid of death.”
Margaret however did not agree with her mother in law about the use of condoms and the assistance TASO provides for the sick. “If I had known about them (Condoms) I would have persuaded my husband to use them. When he came to me at night, I didn’t have the power to refuse him even though I suspected he was sick. I was in his home and did not have the authority. After my husband and baby died, my friends encouraged me to go to TASO, where they checked and found me HIV positive.” Safia later conceded, that condoms had their uses “ but only in a marriage where men play around and condoms are the only way a wife can protect herself, but even then, they can only be used after the two come to an understanding.”
Margaret felt such an understanding could come about through Male targeted education “….So that men are informed the way women are. Posters could be put up in bars, and radio programmes broadcast. Men could also be invited to seminars. We need community based Men groups in the way that we have women’s. The message needs to go to both sides. Society can’t change if you only target half of it.”
Community Based Organisations CBOs) through which I work, have proved one of the most effective ways in which to carry out gender based approaches to coping with HIV/Aids. They have enabled the effective distribution of; material, emotional and technical support so crucial in prevention and coping programmes, and work best when implemented within the framework of a community based monitoring systems. Set backs in this process occur when implementing channels exhibit institutional weaknesses that are ignored, particularly in the areas of; leadership, management and community input. Mary Mutayegwa, my neighbour, spoke of groups that promoted income generating projects that were neither profitable or sustainable but were simply fashionable. “ I would rather farm our traditional chickens than the imported ones, they are easier to feed, more resistant to disease and their eggs have more protein and are good for the patient and the market.”
For her, living 7kms out of Kampala and heading a household of several Aids orphans, food security and the cost of education were major concerns . “ the seasons have changed and soils are now infertile. I need to belong to a woman’s group that is about more than looking for and dishing out money.”
The Mbale Child Development Centre(MCDC) is a community based organization under World Learning’s Community Action to Support Education (CASE) project. To achieve it’s goal of meeting the educational needs of children from disadvantaged homes, MCDC pays for children’s school fees, offers remedial academic support and a program of extra curricular activities. Finally it empowers guardians to assist their children in school. About a third of the children registered with the center are orphans, many of them as a result of AIDS. Their guardians are primarily made up of grand parents, but include older relatives and close family friends. To empower them to assist their children in school, the MCDC staff and a committee of volunteers run an adult education programme that includes functional adult literacy, child development workshops and income generating skills.
Although World Learning’s CASE project, was set up to build the capacity of MCDC and other indigenous CBOs/NGOs to work in the area of basic education. The assistance we have provided has taken us into every sector of society forcing us to acknowledge the fact that nearly all the major issues of development are crosscutting and cannot be treated as separate components. Under CASE, the words “basic education” simply provide a loose guiding framework. The mere fact we were dealing with communities translated into working on issues of governance, accountability, cultural barriers, poverty and health. In MCDC we took a local church congregation of well meaning volunteers and transformed them into a development “machine” that could run an effective programme that has began to produce results: Children registered with the centre have began to read, write their names and attend school regularly. These glimmers of hope in the education of marginalized children were the result of my team’s realization that, if we want to bring about change we must start with the individual. In this we include; ourselves, the development thinkers, the planners, the practitioners as well as the beneficiaries of all our programmes. Our most effective strategies have succeeded in building partnerships that establish and keep communication channels open to reach and encourage feedback from all stakeholders. In this way we managed to establish needs and together with communities develop the strategies needed to address them, and so it is with peace building.
8 years ago I decided to make my own small contribution towards a new Uganda. I was privileged to be working with children from the ages of four to nine. They were our future, and the HIV statistics of the time made them part of the aids- free set that would finally be rid of the scourge. But only if they we empowered them to be so. This meant communicating with , guiding and supporting them in a language they could understand. To this end, I created a fictionalized character called Tema, a strong Moslem girl -child whose adventures inspired, built character, and taught tolerance. Being a moslem girl was a double marginalisation in Ugandan society. I made Tema’s mother a Christian, and her confidante and best friend a boy. Tema’s neighbours and friends came from different ethnic groups and her adventures tackled social issues. The Adventures of Tema has run every week for the past 7 years in Uganda’s leading national newspaper, and every time I try to stop I’m bombarded with pleas from the children, their parents, teachers and the children’s page –editor. So there you have it, from an African woman with something to share on gender based lessons on coping with HIV/AIDS in a post conflict society: I believe, the best approaches are those that work up from the individual, the family, the community and then society.