(Tanzania, June 2006) Tanzania has a national HIV/AIDS policy and is in the process of finalizing legislation on HIV/AIDS. The expectation is that once the policy and legal framework is set, people living with HIV/AIDS and their families will be afforded greater protection. But will a legal framework that solely addresses the public health dimensions of HIV/AIDS and not the intimate aspects of personal relationships that maintain the status-quo in power relations between the sexes suffice?
Treating an invisible syndrome
When one reads the alarming statistics explaining the magnitude of HIV/AIDS in sub-Saharan Africa one gets an impression that people are dropping down like flies. One would think that as one walks the streets, every other person would be noticeably HIV positive. This, however, is not the case, not because HIV/AIDS is not present but because it is rendered invisible – something that makes ongoing efforts to combat HIV/AIDS ineffective, if not difficult.
While HIV/AIDS is very much in our midst it remains hidden from many either by choice or by design. It remains hidden by choice because we choose not to see it; or those that are affected by it choose not to divulge their status. It remains hidden by design when those who have it go to extra lengths to conceal their positive status. Also, it remains obscured when the state fails to address the problem at its core, that is confronting the underlying cause contributing to widespread infections rather than its consequence.
I have been following the progression of HIV/AIDS since the mid-eighties when the formulation of the first national response against HIV/AIDS emerged, but it remained invisible to me until the late nineties. Until then my association with HIV/AIDS was based on health statistics and my long association with women’s sexual and reproductive health and rights. Putting a face to someone living with the virus came much later. But when these live testimonies finally emerged they were persistent in underscoring the pervasiveness of the pandemic. From the outset, it became clear to me that each story of a women who had contracted the virus was peculiar and in most cases did not meet the popular myths around HIV/AIDS.
There are many dimensions to the problem that is HIV/AIDS, something that is not so clear with prevailing responses against the disease. One can only appreciate the complexity involved in combating the pandemic when one reviews the stories of countless women, men and children infected and affected by HIV/AIDS. It is also these stories that inform my political stance on the adequacy of existing HIV/AIDS approaches in combating the pandemic.
Protecting the unsuspecting
One of the first cases I came across involved a bright girl, full of life and humor. I met her for the first time when she was ten but looked more like a five year old. She was born HIV positive, a fact that led her father to abandon the family. It was left to her mother and elder sibling to love and provide for her amidst great hardship. Although an innocent child, she was not spared the humiliation meted out on PLWHA’s that resulted from prevalent institutional ignorance about HIV/AIDS. Her teachers openly discriminated against her, forcing her to wear a red badge to signify her HIV status.
Fortunately, her mother joined an association of PLWHA which provided her and the family with much needed moral and material support. Her sisters, who were not positive, became peer educators and volunteers for an HIV/AIDS community based program. She thus never saw herself as a victim. She accepted her condition and sought to live to the fullest in spite of the fact that she was positive. Her status was only an issue when it made her too sick to play or attend school. She died before her twelfth birthday, unable to realize her many dreams. Her brave attitude gave us a useful advocacy platform to intensify the campaign for the rights of PLWHA.
Progressively, the reality of HIV/AIDS came close to home when a close friend of mine lost her baby girl. Although she had suffered bouts of TB it only became clear that she may be infected with the virus after her very sick daughter was diagnosed with the virus. Indeed it is not exceptional that many women get to know about their positive status in this manner since they do not fit the profile of women who are likely to be infected with the virus in the sense that they are not prostitutes or “loose” women but women who are in stable relationships, the majority having the respectable status of being someone’s wife and, therefore, by local social standards, outside the ambit of the risk category associated with immoral behavior.
Consequently, a significant number of HIV positive women I know contracted the virus as unsuspecting victims. They were brought up to believe that it was enough that they were in a happy, healthy and lasting marriage. The husband’s fidelity was immaterial to complete this equation. On the contrary, the overwhelming perception is that a chaste and faithful wife sufficed to protect the family from ill health and ensure a strong progeny. Increasingly women are finding that an institution that was traditionally meant to provide them with security, stability, health and respect is in fact endangering their lives and livelihoods.
Many of these women are torn between confronting their problem and in so doing drawing attention to themselves, a fact that leaves them vulnerable to public scorn and stigmatization. Importantly, it has the potential to ostracize them from traditional systems of support, especially after their spouse rejects them upon divulging their status. Indeed it is the dilemmas and contradictions women face as the weaker sex that puts them at risk of contracting the virus. Certainly, it is the denial of women’s agency in matters of sexual and reproductive nature that informs women’s social and economic predicament, a situation intensified by the HIV/AIDS pandemic.
Are we fighting a disease or a curse?
The contradictory nature of the disease vis a vis women’s wellbeing is most evident in the story of my namesake, now deceased, who I came to know by virtue of my work with Muslim women. She was an only child, begotten late in life. Her elderly mother was anxious about her welfare after she passed on, such that when a widower proposed marriage she hastily agreed, believing that she was marrying her child to a responsible man. She did not know how her future son-in-law lost his wife nor did he oblige the information. It seems that he had two main concerns – either to draw upon the youth and vitality of his young bride to will himself to good health or to have a healthy person to care for him as his health deteriorated. In either case it was not the welfare of his new wife that was paramount to the fatal union nor did he take any measures to minimize the risk of infection to his young wife.
Next my cousin fell ill to recurrent bouts of TB. In his quest to prove that he did not have something more serious, he repeatedly neglected to complete the prescribed dose for treating the disease, creating resistance against TB. His mother and siblings never accepted that he may have contracted HIV, though they knew he was a womanizer. Instead they were more willing to forgive his philandering but content to blame his wife and her mother for bewitching him. In vain my aunt tried to break the marriage as her son’s condition deteriorated, perhaps to minimize the likelihood of her laying any claims to the matrimonial property, but failed. To our dismay my aunt unceremoniously chased the widow out of the house immediately upon completing her iddat (the mourning period) in spite of the fact that she had two young sons.
Then the young woman who helps us around the house was afflicted by a double HIV/AIDS tragedy: her brother in law died after a long illness that was explained as diabetes coupled with witchcraft. During her time off she visited her sister and took care of him. There is no knowing what risk she exposed herself to as she only confirmed that he may have died of AIDS after her sister succumbed and died soon after. This tragedy ended the working life of this young woman as her mother went into shock, forcing her to take a leave of absence to nurse her until she died. To save her from a predicament like her sister’s, her uncle and brothers planned to marry her off to a man who had been divorced thrice.
While a number of these women were ignorant about their status, a number were in denial not because of arrogance but because they feared the repercussions their status might have. My friend took some time to accept her HIV positive status. A lot of anger was exhibited against her husband’s long love interest and while she came from a religious family she readily invoked witchcraft to explain her errant husband’s behaviour. Perhaps it was more tolerable to accept that her husband was not acting in selfish disregard of her feelings and health were it not for an evil third hand or influence.
My most recent house help must have known for sometime she had the virus but instead of focusing on her condition actively sought out other women suspected to be infected as if in an attempt to deflect attention from her own status. Otherwise she hid her ill health well, substituting it with other debilitating diseases like malaria or typhoid. But when her ten-year old daughter died, she lost her will to live and succumbed almost two months later. The fate of her husband is unknown since he is adamant his daughter was a victim of someone’s bad spell, a view his wife never sought to correct lest she became suspect and was thrown out in the streets.
Interrogating the source of repeated transmissions
The stories serve to underscore certain truths that hardly feature as the key issues in the battle against HIV/AIDS. It is more likely for women to admit their HIV status than it is for men. In most cases I have come across, the women were categorical that it was the sexual permissiveness of their partner that put them at risk. In many cases they were unsuspecting victims. In some cases, they suspected infidelity but were helpless to stop it since as opposed to their sexuality being regulated, their husband’s infidelity was given free reign by religious dicta and the legal framework. While society is more preoccupied with the status of the woman during marriage -whether she is a virgin or not; whether she is rebellious or not; whether she is respectable or not – equal consideration is not given to the status of her partner. On the contrary legal and social institutions tend to extol men’s sexual prowess and irresponsibility.
Likewise, while it is common for women who contract the virus to be punished for their condition there is never talk of compensating them for the harm inflicted on them and the ensuring violation of their privacy and property rights. My namesake was disposed of all her property by her in-laws – even her cooking pots – though it was well known that her culinary skills sustained the family during their short married life. She attempted to fight for her rights but died without justice being realized. The sister of my house help was evicted from the house where she lived and nursed her husband and ended up living with a relative before being bundled back to her village to die.
After initial denial my friend is living an open life. She recently lost her husband and is in the middle of a property distribution exercise directed by his family. While the family is keen to expedite her share of inheritance, perhaps in view of her condition, there is no mention of compensating her for the harm her late husband caused her, if not knowingly then by sheer negligence. She dares not bring up the issue lest her in-laws fall short of being generous towards her. It is this attitude of looking at women as creatures to be pitied and helped, instead of full partners in a relationship, that limits their agency and bargaining power in a relationship. Surely, awarding her compensation is not a matter of retribution or her inability to forgive. On the contrary it is her ability to forgive and go on with her life that contributes to her positive and healthy living. But should such chivalry be abused?
The wrong these women have been subjected to goes unrecognized. The contributions they made to families in terms of monetary and non-monetary forms of contributions go unacknowledged. Instead, these women are vilified by relatives and society for their positive status. Their positive status is equal to a death sentence and licenses their dispossession. Their continued existence means they are delaying the process of wealth transfer and if the virus won’t kill them in time, then heart ache and harassment are efficient mechanisms to expedite the sentence!
The unresolved politics of HIV/AIDS
Most governments have failed to look at the social impact of HIV/AIDS beyond the rhetoric of sharing the burden of looking after those affected by the HIV/AIDS scourge. And while the pandemic presents new opportunities for governments to address gender inequalities there is paralysis in taking deliberate action to promote natural and social justice. Certainly the pandemic presents an opportunity to influence reforms in law and attitudes not only towards HIV/AIDS but in reforming gender relations. Other than reaffirming state responsibility towards principles of gender equality and justice, it affords states an opportunity to engage in social engineering towards meeting constitutional and civic commitments to its citizens, male and female.
The development sector’s HIV/AIDS response fares no better. While it is commonplace to maintain that having HIV/AIDS does not amount to having a death sentence, prevailing policies, discourses and practice related to HIV/AIDS continuously pass death sentences on those infected by the virus. Though my organization addresses HIV/AIDS in the context of reproductive health, I resist working in the field mainly because the overwhelming support to the sector seems to promote welfarism – approaching infected persons as helpless victims thereby subscribing to dominant attitudes that tend to seal the nails on the coffins of those afflicted by the virus. This is an approach to development that we abandoned two decades ago in favor of a more empowering development approach and discourse.
Indeed, whereas we have tried to reclaim the dignity of people who survived gender based physical and sexual violence we are shamelessly victimizing people infected with HIV/AIDS. The biggest pastime for people who want to placate their sense of guilt or get a piece of the HIV industry in my country are projects involving HIV/AIDS orphans where countless children who are infected or who lost parents to the disease are not allowed to get over their loss and the stigma associated with their loss. The association with HIV/AIDS is the brand that sells. Oblivious are we to the message that underlies such projects: Why can’t these children get on with their lives and be assisted by virtue of being orphaned and not because they are orphaned by HIV/AIDS?
Also appalling is the wastage of resource poured in by the international community on material purchases and workshops that do very little to actually help communities deal with the HIV pandemic. Indeed, HIV/AIDS has become the new development craze diverting much needed income from more sustainable development interventions. Why is overall spending in preventive health and reproductive health falling when they form part of the equation for an effective heath response to the pandemic? I visited Rwanda in 2004 and was appalled to find that each major UN agency and international NGO was into the HIV/AIDS sector with very little coordination between them. I found a similar situation in Zanzibar where the bulk of advocacy organizations felt compelled to get into the HIV/AIDS sector to secure funding to remain afloat.
I am equally wary of the ongoing politicization of the question of access to anti-retrovirals for PLWHA. Certainly I have no desire to profit pharmaceuticals, who seek to commodify people’s health in the name of a pseudo-cure. I am also hesitant to create dependency on the drugs in the absence of better nutrition and a guarantee that the scientific community is serious in finding a cure or a better drug regiment. The idea is not to create another dependent population, this time not only on food aid or donor aid but on ARVs. The objective should be to empower PLWHA to live healthy and independent lives without fear of incrimination, stigmatization or impoverishment. It should be about giving security and dignity to those infected and affected by HIV/AIDS.
Statistics explaining the magnitude of the pandemic are plentiful. It is however not helpful when numbers are considered in a vacuum. I took inspiration from a book a young woman participating in our mentoring program is working on to open dialogue about HIV/AIDS. The book is particularly insightful as other than using narratives of women infected and affected by HIV/AIDS to expose the human dimension of the pandemic, it does so while charting her personal trajectory with HIV/AIDS. She explores myths about the disease; education and prevention strategies; and personal and community responses they invoke. Certainly it is in understanding the interactions that inform individual HIV/AIDS experiences that more sustainable prevention options will evolve, options that go beyond showcasing the scourge for what it is but attempt to deal with why it is and is allowed to be.
Salma Maoulidi is the Executive Director of Sahiba Sisters Foundation, a development network that works with the concerns of Muslim and provincial women. Sahiba’s mission is to build the leadership and organizational skills of women and youth. It has network members in 13 regions of Tanzania.