So that you know…

This piece highlights the work of women’s organisations in supporting HIV and AIDS infected people, the shifts that have been made despite the challenges.  It reveals that the work has been done at a great cost to heart, mind and body, and hence the importance of self-care for careers…

The tone of the piece is conversational, and anecdotal.

Hope: Why it is that HIV is scarier than most other chronic and difficult diseases?

Body: I am convinced that it’s because HIV is related to the domain of sex, gender[1], sexuality, patriarchy and power. Sex is controversial  and is constructed through the lens and relations of power;  within that  realm are many other elements that include; morality, law, culture, fear, labelling, stigma, secrecy, control, taboos, punishment, reward, buying and selling,  etc. It’s a crazy and chaotic realm, some groups seek sexual hegemonic powers while others challenge, subvert and resist.

Hope:  You are right. Sex and sexualities are defined by the factors you have mentioned but also shaped by many others including colonialism, religion, location, globalisation, patriarchy, feminism, sexual orientation, class, age, economic and political forces, autonomy, biology, law and culture.  I am always amazed though at the way HIV has opened boxes of sexuality in interesting ways; who in the past would have thought that one day we would be able to talk openly about condoms and vaginas and protection?  And even have conversations with our bodies; remember the vagina monologue?

Body:  Yes. VM has been instrumental in talking openly about rape, incest, fear and control. And you are right, sexuality lids have been opened but  without the resources to continue fanning flames of activism, sexuality and everything that goes with it will revert to being clothed in taboos, fears, mysticism, inhibitions, silences and hypocrisy. Those clothes that make it impossible for little girls to speak out even after rape, parents who fear to talk to their children about their bodies, and hope someone else will, fears that make some attack schools that are teaching sex education in schools. It’s those same fears that hide incest, domestic violence and abuse in the box of ‘private’ sphere where the burden of secrets is stored.

Hope: We have to admit though that Africa has made significant progress in creating spaces at policy levels for discussion of sexual and reproductive health and rights.  Look at the many policies that activists lobbied for and were passed; the African Union adopted the Protocol on the Rights of Women in Africa (Maputo Protocol),  the Plan of Action on Sexual and Reproductive Health and Rights (Maputo Plan of Action), and the Campaign on Accelerated Reduction of Maternal Mortality in Africa . Then there are many national policies including those related to gender, domestic violence and rape. Is that not progress?

Body:  Yes, it is but if we depended on policies, we would be dead. What women have won has been through their own organising efforts.  The system that keeps women controlled, contained and policed remains intact.  Commitments to ending gender inequality and HIV and AIDS through enshrining clauses in constitutions, via parliamentary legislation, state policy and national gender machineries, are not unique tactics. But policy reform is not an end in itself, it cannot be allowed to replace or subordinate the goal of dismantling patriarchy or that of consolidating political power and capital.  As our continent becomes increasingly violent and women’s bodies are under increasing threat, we are seeing the limitations and failure of an attempt to end patriarchy via paper.[2]

So Hope, women’s community based organisations (CBOs) and women activists have been our lifeline. They have been at the centre of enabling us to reclaim our bodies.

Hope: You keep talking about women’s groups; how do they support you?

Body: In every community there are women HIV champions most of them trained by Community based organisations. Some work alone or in groups and organisations.  These women have demonstrated that when individuals come together with a common vision of social change, hope can be revitalised into a motivating force for change, it can be transformed from individual or private to collective hope.

So in a nutshell, individuals and CBOs champions have been at the centre of radical work related to HIV. Were it not for their activist leadership, community mobilisation and organising, we would be walking alone, without support, without hope. Most likely, many of us would be dead.

Hope:  What has shifted as a result of their work and support? Let us be specific.

Body: Before I go to the shifts, let me talk about love and a sense of belonging. In the 80 and early 90s, there was a strong sense of hopelessness and suicidal tendencies caused by stigma, taboo and rejection. Women’s groups particularly community based organisations gave us a burning desire, an inner flame to live no matter the hardships. They gave us hope garnished with love.  Love supports hope. Love is the most major resource and tool they have used to enable us to build a community that keeps us sane and vibrant.  Raising our voices, demanding justice and equality in a society where we are despised for carrying a disease that kills people is not easy. Therefore, their love for us gave and continues to give us strategies to cope with the present in the face of uncertainty in the future.

Hope: So love is a major resource and yet many of us fear naming it as a tool? But anyway back to the shifts.

Body: The shifts continue to happen as a result of political processes and feminist popular education and not quick fixes; raising awareness, learning, demystifying sexuality, understanding power, re-building pride and dignity, exposure and sharing information.  Some of the shifts include the following:

• Shift from extreme fear to building power within; a sense of one’s own dignity, profound sense of empowerment is always undermined by the doubt, shame, guilt produced by the fragmentation and exhaustion of our own lives;

• Shift from fear of working with others to collaborative efforts (Power with); it’s difficult to construct sustainable collective power if activists are unable to recognize and respect their differences, deal with competition and needs for recognition which all emerges from our deep emotional, psychological and spiritual deficits and traumas. 
• A shift from seeing HIV as a death sentence to seeing it as something manageable especially if one has access to antiretroviral drugs (ARVs).

• Shifts from isolation to being part of a big community by making use of internet and other communication technologies; the access has created opportunities and potential for increased connection and political influence. We have amplified our voices even when we are not sure that anyone is listening.
• Shifts in engagement with decision making structures and formal power and improved responsiveness of institutions to our demands. 
• Shift from self- neglect and abuse to learning to love and care for oneself, to value well-being.
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• Hope: Thanks Body. You are very articulate and clear about the shifts; unfortunately I understand the gains are being eroded by lack of resources. We must fiercely organise resources, we can’t afford a reversal.

   

  I want to turn to the question of self-care and well- being. We all know that the burden of care can lead to wear, tear and erosion of heart, mind and body. We also know that for the majority of women; self- care and well-being are not options.  Women give and give till they collapse. How do the activists protect themselves, renew energy and take care of their wellbeing?

   

  Body:   You are right Hope. Feminisation of responsibility (caused by inequality in power and social norms and institutions known as patriarchy) is harmful to women’s self-care and wellbeing.  Women’s work is taken for granted; it’s not even budgeted for.  I am talking about women but I want you to note that we differ, depending upon our class, rural – urban location, nationality, ethnicity/’race’, disability and aspects of social relations. Some women are much more able to take care of themselves than others but that might be at the physical level, not heart and mind.

   

  I have observed that carrying the burden of care is likely to lead to the following:

   

  • Wear, tear and erosion resulting from giving and giving and giving even when there is nothing to give. Eventually women die sad.
  • Depression, fear and insecurity resulting from fatigue, loss of energy and anxiety.
  • Fragmentation of the mind, body and soul resulting in absent-mindedness, loss of appetite and inability to remain calm.
  • Inner battles and struggles regarding resources and coping in a risky situation.
  • Inability to be ‘present’ to oneself.

    Given the above, it’s not surprising that sometimes in our spaces, and in our organisations, we chew each other without understanding why. 

  • Hope: I am extremely passionate about well-being for organisations and activists who do too much. However, I don’t know how this can be done effectively and how we can build it in everything we do. Any suggestions?

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    Body: Yes, I do have suggestions.

• It is important to fund activities that promote wellbeing and not see it as an additional responsibility. It’s actually the work because that is what enables humans to be and remain transformative and resilient leaders.  Wellbeing is steeped in politics and power relations because we women are brought up to care for others but feel guilty about caring for ourselves.  We usually don’t take the time to think about our own emotions and thoughts, our vulnerability, to live a life we want.  Well- being requires determination, strength, wisdom and fearlessness. It requires inner power.
• Wellbeing is about whatever makes one feel good, energizes and lights the way. It is important therefore, to develop activities that defend our bodies, and agendas that reflect and channel our passions, values and anger (heart) and tap into our minds.
• We need activities that connect the emotional, physical, intellectual and spirituality.
• Wellbeing really is about integrated security. One can look at wellbeing from many angles but this is how I summarise it:

In conclusion, we are talking about women but all humans need to pay attention to their bodies, hearts and minds. When we don’t, we travel heavy and pay for excess luggage, use the currency of anger, lying, chewing each other, cheating, etc.

 For women there is an extra responsibility; wellbeing involves destroying the ‘master’s huge house’, built with bricks made out of patriarchy, culture, power; sex and sexuality, religion and control.  

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[1] Gender refers to the social relations between women and men, girls and boys, young and old, which are marked by male domination and female subordination. Gender analysis therefore focuses, unapologetically, on women/girls as the most oppressed, exploited, subordinated sex.

[2] Shreeen Essof, Musings on the feminist project, 2016 (unpublished)