It was American Feminist Judith Butler who once said, norms act upon us in 'new and unexpected ways'. Indeed tradition, culture and religious norms can be a very powerful instrument to effect change in society but yet they can also bring untold misery to members of the community like it did in the case of my relative.
When I saw six missed calls from my sister in Manchester, my heart panted heavily: I thought about my old Papa. He will be eighty later this year and when one has such an old relative, one is always worried about when the inevitable will occur.
I never saw it coming, but my sister's call was to inform me about a sick relative. One whom I knew well as we grew together in the same compound. One whom I am a year older than, whom we shared a lot of fond memories; from washing the dishes together to counting when the adults will call us to run an errand for them. It was those little childhood naughty tricks that draws me closer to this relative than just the fact that we are blood related.
My sick relative has contracted HIV and is also suffering Tuberculosis. Nobody knows when she actually contracted HIV or from whom. She was a hairdresser. She got married less than a year ago and threw a big wedding reception and party that was a talk of her community.
She had been admitted at the Connaught hospital and ran away to her home in Freetown. At her home, her sisters threatened to call the Ebola emergency since she resembled any Ebola patient. From her picture, she looked very sick; Sunken eyes, shot-out cheek bones and very thin. In the scorching sun she wore a winter coat. She looked like an old woman. Even older than my Mother. She tried unsuccessfully to convince her sisters that she was not Ebola positive but didn't show them her medical papers which states that she was HIV positive. She could not afford to disclose this at the risk of any further or even more serious stigmatization if they eventually found out her HIV positive status. Left with no other choice, she quietly used the back door of her house and escaped to my parent's house.
HIV affect more women in Sierra Leone. A 2008 national health and demographic survey revealed that 1.7% of women and 1.2% of men in Sierra Leone were HIV positive with an overall prevalence of 1.5%. According to AVERT UK, an estimated 21,300 heterosexual men and 32,700 heterosexual women were living with HIV in 2014, among this 55% of men and 62% of women were black Africans. Among this, 16% of men and 12% of women were undiagnosed. The testing rates for black Africans was as low as 36.8%. Despite the stark difference in statistical figures on HIV prevalence between Sierra Leone and the UK, what is absolutely clear is traditional, cultural and religious driven stigma against people living with HIV.
Africans carry their culture with them and most of the stigma present in Africa is also popular in African diaspora communities. There is this bizarre form of conservatism among Africans, that even though we are aware that lots of us are involved in unprotected sex, sometimes with multiple partners, we tend to shy away from the outcomes of our actions. For instance Africans who contract HIV and other sexually transmitted diseases or even women and girls who got pregnant outside wedlock are considered as loose, unclean, promiscuous and dirty with horrible character that must be avoided.
It is disheartening to note here that in most cases our attitudes are driven by our underlying beliefs often stemming from tradition and religion. A UNAIDS 2015 report shows that in 35% of countries with available data, over 50% of people reported having discriminatory attitude towards people living with HIV. Mostly this stigma emanates from religious and cultural values that links HIV to personal irresponsibility and moral faults. In some cultures and belief systems, HIV is viewed as a curse from God that needs spiritual cleansing. In subsaharan Africa where the major source of HIV infection is heterosexual intercourse, the stigma is mainly directed at infidelity and women are mainly blamed for it. One of the major efects of this stigma is the instilling of loss of hope and feeling of worthlessness that further ignites early death.
According to Sierra Leone's National AIDS Secretariat (NAS), at least 55,000 people are living with HIV in the country and are covered under an organisation called Network of HIV positives (NETHIPS). The country's HIV act of 2011 addresses the problem of stigma and discrimination and forbids denialof an HIV positive person's right toemployment, education or entry into the country. However, head of NETHIPS Idrissa Songo had over time stressed that the act forbidding stigma and discrimination had not been implemented.
The NAS 2014 stigma index study showed that71% of people living with HIV in Sierra Leone complained being stigmatized through gossip while 16% complained of verbal insults. Sex workers faced higher stigmatisation including physical harrassment.
According to UNAIDS Sierra Leone country director only 52% of people living with HIV in the country are accessing treatment. Having all people living with HIV accessing treatment is hinged on zero discrimination and stigmatization. Most of these people do not want to be seen around anywhere linked to HIV for fear of societal stigma and discrimination.
Executive director of NAS Dr Momodu Sesay said on the 2016 zero discrimination day that HIV/AIDS stigma and discrimination in Sierra Leone is widespread and happens in health facilities and places of worship.
When I told my friend from Nigeria about the condition of my relative, she advised that I tell people that she had suffer from malaria. 'You know if you tell people its HIV, they will judge'. She was so right. Sometimes, the stigma and ostracism against people who suffer certain form of ailments are pioneered by places of worship and religious leaders, who attached fetish beliefs and life choices to these conditions. For instance a woman who contract HIV will have her morality question by her fellow religious members. Traditional and religious beliefs link HIV with promiscuity and prostitution. My sick relative debunked any idea of having a religious head coming over to offer prayers for her. She was worried she will be judged. What message are we sending to the world? What are we telling young people with such attitudes towards the sick and vulnerable?
Imagine the improvement in the quality of life of those who are impacted by HIV along with other diseases, if we decided to learn rather than to judge, to understand before we condemn, to appreciate them rather than to shun them, to believe in them rather than denying them, and to hug them rather than mock them. I strongly believe that in order to end these dangerous stigmi, education must be focused at religious places, traditional settings and even our homes. We the African adults must start teaching our children the virtues of loving, of appreciating every one regardless of their health condition. The African society seriously consider including an anti-stigma in school curriculum, from primary to tertiary levels. There should also be laws protecting sick people from stigma and ostracism. These laws must be backed by preventive and protective action from the authorities.
My sick relative went to my parents' house and explained what has transpired between her and her sisters but did not mention her HIV status. Again I believe she was worried of what their reaction would be. Meanwhile, on mentioning that her siblings have threatened to call the Ebola emergency line, everyone started running . There were reports during the peak of the Ebola outbreak, of people hiding their Ebola status and exposing many others to the dreadful virus. No one wants to be a victim of Ebola that killed an estimated 3,955 Sierra Leoneans between 2014-2015. She later revealed her medical papers that states her HIV status. Everyone started crying. My Mum cried bitterly. Both parents of my sick relative are dead. My Granny who cared for her is dead too.
When I spoke to my HIV positive relative on the phone, with all the family members around her, she sounded strong. She said 'I am happy. I feel loved. I feel I belong somewhere.' Most often in our communities, people who suffer chronic or terminal illness die not from the illness but from loneliness, abandonment and desertion. It is these attitudes that need addressing to prolong the lives of these people. I know my relative will die one day, I know we will miss her. I know we will shed tears for her, but while we do, we will shed some happy tears knowing that despite the cultural stigma of HIV, our family came together to support her. This won’t change the fate of her illness, but it dramatically changes her personal journey with it. We will shed some happy tears for knowing she died alone but happy.