Shining a Light on the Darkest Force

Sex and death are two of the most fundamental elements of the human condition. They are intensely powerful yet private topics that remain taboo in most cultures of the world. Add in a layer or two of moral or religious righteousness and some pretty strong cultural mores and you have a recipe for a staggeringly difficult environment for full and open, frank and honest discussion.

By combining the two, HIV sits stubbornly at the nexus of a multiplicity of human emotions, most of them negative: judgement, suspicion, accusation, fear, denial, revulsion, pain, remorse, pity… the list is close to endless. These are dark forces within the human condition and can lead to some pretty inhuman behaviours –  to give this darkness a shape, upon which we hope to shine a light, we refer to them collectively as HIV related stigma and discrimination.

It is hard to understate how disruptive a role stigma and discrimination play in the fight against HIV and AIDS. There is no point building a beautiful new treatment clinic if people are too ashamed to be seen entering it; there is no value in stocking the country with the best medicines if people are too scared to be seen taking them;  there is nothing to be gained in talking about the prevention of new infections if people are to embarrassed to take out a condom; I could go on…

For this reason, my organisation is home to small team of stigma experts who are dedicated to tackling this scourge across the continent. The team is led by Sue Clay and her two expert trainers Mutale Chonta and Chipo Chaya. Sue is originally a VSO volunteer who came to Zambia 10 years ago and fell so in love with the place that she forgot to go home. Last week I was fortunate enough to travel with them to Kenya to observe the first workshop they have conducted with Armed Forces personnel.

The team have developed a toolkit of modules which have now been translated into French, Portugese and Arabic in recognition of the truly trans-continental reach of this issue. They deliver the material with a slick mix of participatory discussion and debate, interspersed with much singing and dancing (no such thing as stiff and stuffy participants at an African workshop!) that really help to break down the barriers between groups and get them to examine their own perceptions and attitudes towards the disease before equipping them with the skills to go and challenge stigma amongst their own communities.

It was engrossing to watch the military personnel start the week talking of their HIV experiences in terms of “them and us”  only to end it on the much more personal “we and I” . My moment of greatest understanding came as one of the local trainers shared her experiences of being the wife of soldier who had died of HIV. Her husband had found himself to be HIV positive only when he was stood down for a UN mission after routine blood testing.  So filled with his own ‘self stigma’ he could not even bring himself to disclose his status to his wife. Instead, he simply returned to the family home to die slowly and in silence.

After his passing, not only did she and her children loose the housing and other priveledges associated with her husband’s career, she then had to face the reality of checking her own status and confirming that she was indeed also HIV+. Very quickly she lost all her friends on the base and despite coming from a family of 17 brothers and sisters, found herself being disowned by each and every one of them.

Today she is the very definition of ‘living positively.’ She is fit and well on her ARVs, has returned to her valuable career as a nurse and is playing a vital role in the fight against HIV stigma by training others. The nuclear family is an incredibly important part of the African social fabric, yet she and her three children remain ostracised by her entire family and past colleagues. It is astonishing to me that even these strong ties are succeptable to the ravages of stigma and discrimination.

Despite having entered an era where HIV is both highly treatable and far from uncommon in this part of the world, I am sorry to report that Sue and her excellent team have many more hard years of vital work ahead of them.

2 Responses to “Shining a Light on the Darkest Force”
  1. Janno'mum says:

    Hi Berkley,

    Each time I read your blog I ‘m glad you are so capable of giving words to those who suffer so much and are not able to do so!

    Keep up the good work, and may the Prince of peace be at your side
    Wishing you and your team a true Christmas and blessings on you and your team. Thank you!

    mum of Janno

  2. Richard and Jay Clay says:

    Hi Berkley
    Sue just sent us the link to your blog – it`s just lovely what you have written, especially about the work Sue and her team are doing. As you can imagine we are vey proud of our elder daughter, as we are indeed of all our children. I`m sorry we might not have the opportunity to meet you>
    happy Christmas and all the best to you
    Richard and Jay

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