Dignity is half the battle
By Katie Langmore
This article contains the full text of the extract that appeared in May's newsletter.
Early this year, I found myself sitting at a long, rustic table in a small room at the edge of a church in King Williams Town, South Africa, watching ten or so women and one man sing a song about AIDS. “ARV's take me from down here, to here, to up here”, they sung in Xhosa as they carried out in unison hand gestures to accompany the message. The room was filled with deep harmonising voices. Some of the singers had eyes closed, others wide smiles. Each seemed to be transported by this unique song.
I felt myself soaring above the table as I listened. This was traditional acapella African music – with its infectious rhythms, resonating timbre and ardent delivery – yet with a completely new, heartbreakingly important purpose. It was as though I was witnessing, bundled into one sublime moment, a symphony of the courage and strength and pain of these people who have been working to turn around the scourge of the AIDS pandemic in their country.
Six months earlier, I had been sitting at a table in the lovely East Melbourne office of AngliCORD, naïve to many of the problems and much of the magic of South Africa, but keen to finally listen to the tap tapping of my sub-conscious that has over time instilled a desire to explore and document aid work. I had offered to self-fund a trip to visit and write about one of AngliCORD’s projects and much to my gratitude,
AngliCORD generously welcomed my proposal. It was agreed that I would visit their partners in South Africa’s Eastern Cape.
The Eastern Cape is the poorest of South Africa’s nine provinces, largely due to the fact that it encompasses two of the former homelands – areas created during apartheid to house the entire black population (some 80 per cent of the population) in 10 per cent of the land. The childhood stomping ground of Nelson Mandela and Steve Biko, it is a largely rural region, with poor public services. More than half the population is unemployed. The rate of HIV/AIDS infection sits at about one in four.
During the 90s as the HIV crisis slowly came to the fore, AngliCORD felt compelled to have a presence in the Eastern Cape, and in 1999 formed a partnership with the already established Grahamstown Diocese’s Department of Social Responsibility (DSR). The DSR was established in 1977 to offer legal assistance to black farm workers during the Apartheid years. After a period of relative inactivity following the breakdown of Apartheid in the mid-90s, the department is now in full swing again, tackling the region’s new crisis out of its original modest base – a faded yellow building in the tiny rural village of Kei Road.
My first day in South Africa was spent in spectacular Cape Town visiting faith-based organisations with HIV/AIDS in their framework. We were picked up in the morning by Kelvin, from the Anglican Church of Southern Africa’s Office of HIV and AIDS, and were taken to the office via a winding road that curves up Table Mountain. There we paused to take in the view over the city and the mysterious, elegant creep of mist – which locals call the Table Cloth – that spills over the top of the mountain.
I ploughed through the day, dazed with jetlag, yet ebullient, with senses alert, and learnt of the work of the Office of HIV and AIDS and later, the faith-based NGO Hope Africa. Already the realisation was hitting that the church had stepped in financially and practically to fill the many gaps left by the South African Government’s slow response in the fight against the growing pandemic.
The following day we flew to the Eastern Cape’s city of East London and were picked up by the director of DSR, the inimitable Tony Schnell – a white South African of mind-boggling wisdom and good humour, who is referred to by his staff of ten affectionately as Mr T.
At the beginning of the decade, when the DSR moved to extend its focus and funding to the HIV/AIDS crisis, and Tony stepped in as director, it was decided the organisation should seek out and support existing projects that had already been initiated by communities themselves. Through ongoing mentoring and support of these groups, the DSR hoped to reach thousands of people living with HIV/AIDS, their families and orphans, while instilling “dignified sustainability” and side-stepping a culture of dependency.
Since then, the DSR’s support has developed into three main areas: the Paralegal Justice Program which does crucial work empowering communities through legal advice, education on governmental-support rights and advocacy; the Land Justice Program which is working to hand areas of church land over to community groups for housing, community and health centres, schools etc. and give horticultural training; and the HIV and AIDS Support Program which offers education, training and financial support to community groups working with those affected by HIV/AIDS.
When outlining such projects it is difficult not to sound dry. How often we skim our eye over these familiar terms, recognising their worth yet not truly ingesting the impact of them, or putting a face to them, or more specifically, recognising the wealth of meaning behind it – a look of pride when a family which has recently been given land shows off their abundant vegetable garden; or the tears of an HIV-positive woman who talks of receiving more tenderness from her support group than she does from her family.
I wasn’t prepared for the impact such encounters would have on me, and I couldn’t guess at how strongly I would feel about imparting the struggles and strength of those I met who so bravely entrusted their stories to me.
My mind keeps returning to one of the AIDS support groups DSR has been involved with in the town of Dimbaza – an infrastructure poor, former apartheid dumping ground that saw the deaths of many, especially children, during the last few decades of white rule. The group was run from a shed-like building, with a dozen or so plastic chairs and a makeshift stove on which they were boiling tripe for their soup kitchen. I gagged from the smell as I entered. The day was intensely hot and the room, stifling. I took one of the small chairs and as is customary, one by one everyone in the room introduced themselves.
During the session a rake-thin woman, with twin toddlers clambering around her, told us that two years ago she had found out she was not just HIV-positive, but was suffering from meningitis and tuberculosis. She sobbed as she recounted the horror of her diagnosis. Of her terror and anger. Of how all the others from her hospital ward had since died. Amongst all this she revealed the twins weren’t hers but orphans she had taken in.
I sat listening to her words through the translation of another, with a pad on my knee and sweat dripping down my face, and the rest of the world dropped away. I felt mute and useless but slapped with a compassion so intense the moment now sits in my mind with all the clarity of hyper-reality.
Eventually she had heard about the group – called Never Give Up – and had tentatively come along, filled with an uncertainty and shame the others agreed they had also initially felt. Through the group she attended workshops on treatment organised by the DSR and for the first time was properly educated on her health and learned her diagnosis was not a death sentence. Later, the group’s leader Babes led the members in song and the shed was transformed.
At the heart of each division of DSR are some exceptional staff members. Thandi, the organisation’s paralegal officer, is possibly the world’s fastest talker and I imagine she stuns the powers that be into submission simply with the force of her diatribe. There is an unconscionable lack of communication between the Government and communities in rural areas in relation to what small rights and grants people might have access to. It is as though the Government tokenistically creates these concessional nods to the pandemic, yet doesn’t provide enough of a workforce on the ground to educate communities about them. I have watched grandmothers crying they can’t afford their orphaned grandchildren’s school fees only to find out from the DSR that the fees should be wavered for orphans.
The land justice program is run by Ray – a horticulturalist who studied developmental agriculture in Cambridge on a scholarship and a former political activist who worked alongside Biko in the black consciousness movement. Ray is managing the negotiations and red tape of transferring church land titles, but at a more grass roots level, is imparting his horticultural knowledge to enable communities to create sustainable gardens. I saw the fruits of this while visiting several projects and will never forget the sight of a dozen grandmothers, with tools in hand and some with babies strapped to their backs, working their large vegetable garden, which supplies their orphans’ soup kitchen. Such a trickle down effect of knowledge and dedication means a hungry child might be served a warm meal of nutritious, home-grown vegies. When you hear children are fainting at school due to hunger, such an outcome to land management develops a particular poignancy.
The HIV/AIDS support program is run by Judy, a natural, formidable and wise facilitator, and gentle Des, who has a caring ear for the individual worries of every member of the support groups. The DSR’s role in these groups is varied – they offer literature, education and training workshops in everything from running a meeting to administering anti-retroviral medication. They sit in on group meetings to offer mentoring and ascertain what the groups’ needs may be, and they give small “sustainability” grants of around 2000 Rand (about $300) on the premise they will be used to generate more funds.
I heard about the successes of such a grant at a project called Alice Hospice. This group was not yet functioning as a hospice, but was the Alice community’s main access point to ARVs, a soup kitchen, a travelling support and food service for those too sick to leave their house, and a support group and drop-in centre for people living with HIV/AIDS. The group had impressively managed to organise the donation through various businesses of their fridge, stove, furniture, beds, wheel chairs and more, but still desperately needed funds, not even being able to afford medical gloves to help protect volunteers from tuberculosis.
So the Alice Hospice applied for a DSR grant to buy sewing machines in order to make and sell clothes to raise funds. With their 3000R they bought several machines and to their delight, had soon made 8000R.
When we visited Alice Hospice, many members came to the meeting, most borrowing bus fares in order to get there. Chairs lined each wall around a rather large room and more than half were occupied by young, vibrant women. As people told their stories, I began to glimpse the pain and insecurities behind the stoic demeanour of these women, who were my contemporaries and younger. Some had been raped, all were HIV positive. One woman had taken ARVs only intermittently which meant they were losing their effectiveness, and she could never go off them again. Another reported that her CD4 count (a measure of immune function) got down to 1 – at the knocker of death’s door – before receiving help and treatment from the group and now celebrating a count of 920.
Some of these young women huddled around my camera when I pulled it out, so keen to have their photos taken, and I thought of that desire to have their image out there – offering a little bit of glamour no doubt, but perhaps also the sense of immortality photography can bring.
We can hear the statistic that one in three women aged between 25 and 29 years in South Africa is HIV positive (compared with 12.2 per cent of men in the same age group), and it’s shocking, but when you sit in a room with the fears and courage of these beautiful women who are that statistic, it’s devastating. Women have long dealt with oppression in South Africa – oppression of class, race and gender – and now are bearing the brunt of the pandemic. With the highest infection rates, they are also the carers and are at the forefront of community-based activities. It has been said grandmothers (Gogos) are the unsung heroes of South Africa, but I would like to extend that to all of its women.
In his remarkable book on the HIV pandemic in Africa, Race Against Time, Stephen Lewis says: “Stigma is the bane of progress; it savages and ravages, ostracizes and isolates those who are living with the virus. Eradicating stigma will be the last holdout in the epic battle against AIDS.”
The trauma of stigma was visible in the eyes of the young women I met at Alice Hospice who tentatively shared their status, and with other men and women I met during my weeks in the Eastern Cape. Yet there is also a sense that through community groups, through a structure of support and platform on which to share experiences, the stigma is being beaten down. Tony said: “It makes us so happy when we see people walking in dignity, because when that happens we are halfway through the battle of AIDS.”
On a wall in the small common room at DSR, where meals are shared and prayers held, is a small sign with the three objectives of the organisation, developed collaboratively by its staff:
- Justice and Human Dignity
- Community Development and Social Responsibility
- Sharing and Accountability
Those words – dignity, social responsibility, accountability – seemed all the more poignant hand-written on that modest little sign and more pertinent having seen the personification of their meaning and results of their implementation. I have placed that sign on a wall in my mind, because those goals belong to all of us.