The Frontlines of My Life: Is tradition and religious stigma disempowering women?

Mkandeh
Posted March 2, 2016 from United Kingdom
STAMP OUT STIGMA AND DISCRIMINATION
HIV stigma and discrimination happens in health center and places of worship

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.

Comments 9

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ARREY - ECHI
Mar 02, 2016
Mar 02, 2016

***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 strongly agree. Most often, it is the feeling of loneliness and stigmatisation and even blame that kills. Wish you joyou times with your relative.

Mkandeh
Mar 02, 2016
Mar 02, 2016

Hi Arrey-Echi,

Thanks for adding your voice sister and thanks for the wish.

Blessings

GetRude
Mar 03, 2016
Mar 03, 2016

Best wishes to your relative and i am glad for her that she has a supportive family now. I am curious if she is now on medication? If she she goes for thw regular check ups she needs to go to. If she is i sincerely hope ahe now believes there is life after HIV contraction. All the best supporting her.

Mkandeh
Mar 03, 2016
Mar 03, 2016

Hi GetRude, Thanks for your concern for my sick relative. Yes, she is on ARV. She's still admitted at the hospital. She sounded hopeful when we spoke on the phone. Many thanks

Amalie
Mar 06, 2016
Mar 06, 2016

Wow Mkandeh, I am soooo touched by your story !!! touched by the loving and understanding way your dealt with the matter !!! thumb up my dear and I am sure your relative appreciates your support to her and is happy to feel the amount of love she is surrounded with. 

The world needs affectionate people like you who can make a big difference in other people's life. 

Mkandeh
Mar 08, 2016
Mar 08, 2016

Hi Amalie,

Thanks for your beautiful contribution to this debate. Indeed, support is all critically ill people need to put smiles to their faces. Smiles can sublime the physical pain they feel inside.

Love and sisterhood

Joseph-Jacques MUGEREKE KISAHIRA
Mar 18, 2016
Mar 18, 2016

English:

Good morning, Madam MKANDEH!

Thank you for sharing your interesting and exciting Post about the negative impact of tradition, culture and religion.

Let us say at the outset that it is the traditions and backward customs that are bad and deplorable; and not all of them.

Also thank you for sharing the quote from Judith Butler, the feminist American.

Your Post is both interesting and food for thought and debate. Therefore let’s debat. Only you will excuse me if one or the other opinion of me would upset you.

Loneliness and rejection of patients with HIV / AIDS in their families, their families and their communities.

You did well to talk on the phone and encourage [from London] your Close infected with HIV / AIDS during his moments of delirium and before his death. I imagine that you did it being already informed of his HIV status.

But what happens most often is that unfortunately the patients themselves hide their HIV status or illness. By their silence, they thus endorse some responsibility from their families and communities. The clear example is that of your loved one who, knowing already infected with HIV and also suffering from tuberculosis, preferred to return to Freetown rather than continuing care at the Hospital Connaught! Moreover, knowing already ill, she engaged in unnecessary and cumbersome wedding ceremonies!

Religion and prayer for the sick.

Like it or not, whether we believe it or not, prayer visits by religious officers or simple believers to people infected with HIV / AIDS or suffering from other diseases are a source of comfort and moral relief (if not physical or physiological). The words of prayers are always full of gentle encouragement and optimism.

Okay that loneliness kills people in terminal stages of AIDS because rejected by their families and communities. But it's not just AIDS patients who suffer from loneliness; so teaches that in some cities, people are lonely to the point that there are in desire of suicide.

No, I do not share the view that patients who conceal their HIV status or do not want to reveal it to their family or community are only in the African continent. I think it depends on individuals and their educational and awareness levels; it does not depend mainly on precarious material conditions.

You do well to advise Africans to register on the school regulations articles prohibiting the stigmatization and ostracism against HIV-infected people and focus education and awareness on religious and traditional backgrounds African ... Madam, in my opinion, it must involve all schools in the world; because HIV / AIDS is a universal pandemic that spares no continent, no matter the material and financial conditions in which they live.

I do not know if there is at this date an investigation or a scientifically conducted study that has confirmed that in Africa there is a "bizarre form of conservatism" and elsewhere [in London, in Europe, America, Asia, Australia or Greenland ...] it would be a "normal conservatism"!

Religions, customs and traditions exist across the world; but those that we deplore, are those backward and likely to incite to violate human rights.

Finally, once again thank you for your Post, Mrs. MUKANDEH. As you may have found it, it require much franc debates, and that's fine.

I wished we debated face to face; unfortunately, you and I, are very far from each other. With the permission of Emily, I will send her my mobile numbers that she’ll transmit you. Then we will make further discussion. I thing that in public Internet it would be difficult to discuss fairly and calmly.

At last, would you tell me where and how you will implement your advocacy plan against HIV/AIDS; in Sierra Leone or in London?

Have a good day, MKANDEH!

Joseph-Jacques.-

French:

Bonjour, Madame MKANDEH !

 Merci de nous avoir partagé votre intéressant et passionnant Post concernant l’impact négatif de la tradition, la culture et la religion.

Disons d’entrée de jeu que ce sont les traditions et coutumes rétrogrades qui sont mauvaises et déplorables ; et non toutes.

Merci également de nous avoir partagés la citation de Judith Butler, le Féministe Américaine.

Votre Post est à la fois intéressant et matière à réflexion et débat ; débattons donc.

 Seulement, vous voudrez bien  m’excuser au cas où l’une ou l’autre opinion de ma part vous aura contrarié.

Solitude et rejet des malades infectées au VIH/SIDA par leurs familles, leurs proches et leurs communautés.

Vous avez bien fait de parler au téléphone et d’encourager [depuis Londres] à votre Proche infectée par le virus entourée du VIH/SIDA pendant ses moments de délire et avant sa mort.  Je m’imagine que vous l’avez fait étant déjà informée de son état sérologique.

Mais ce qui se passe le plus souvent est que malheureusement, les malades eux-mêmes dissimulent leur statuts sérologiques et ou leur maladie. Par leur silence, elles endossent ainsi une certaine responsabilité face à leurs proches et leurs communautés.  L’exemple parlant est celui de Votre proche qui,  se sachant déjà infectée au VIH et souffrante également de la tuberculose, a préféré rentrer à Freetown plutôt qu’à poursuivre les soins à l’Hôpital Connaught ! Bien plus, se sachant déjà malade, elle s’est livrée à des fastidieuses et inutiles cérémonies de mariage !

Religion et prière pour les malades.

Qu’on le veuille ou non, qu’on y croie ou pas, les visites de prière des religieux gradés ou simples croyants aux les personnes infectées au VIH/SIDA ou souffrant d’autres maladies constituent une source de réconfort et se soulagement moral (si pas physique ou physiologiques). Les paroles de prières sont toujours douces pleines d’encouragements et d’optimismes. 

D’accord que la solitude tue les personnes en phases terminales du SIDA parce que rejetées par leurs proches et leurs communautés. Mais il n’y a pas que les sidéens qui souffrent de solitude ; à tel enseigne que dans certaines grandes villes, les gens souffrent de solitude au point qu’il y en a qui s’en suicident.

Non, je ne partage pas l’opinion selon laquelle les malades qui cachent leur état sérologique ou ne veulent pas révéler à leurs proches ou à la communauté soient du seul continent africain. Je crois que cela dépendant des individus et de leurs niveaux d’éducation et de sensibilisation ; cela ne dépend pas non plus des conditions matérielles précaires.

Vous faites bien de conseiller aux Africains d’inscrire sur le règlement scolaire de leurs écoles des articles interdisant la stigmatisation et l’ostracisme à l’égard des personnes infectées au VIH et de focaliser l’éducation et la sensibilisation sur les milieux religieuses et traditionnels africains… Madame, à mon avis, cela doit concerner toutes les écoles du monde ; car le VIH/SIDA est une pandémie universelles qui n’épargne aucun continent, et peu importe les conditions matérielles et financières dans lesquelles l’on vive.

Je ne sais pas s’il existe à ce jour une enquête ou une étude scientifiquement menée qui ait confirmé qu’en Afrique il y a une « forme bizarre de conservatisme » et qu’ailleurs [à Londres, en Europe, en Amérique, en Asie, en Australie … ou au Groenland] il aurait « un conservatisme normal »! Les religions, traditions, us et coutumes existent partout au monde ; mais celles que nous déplorons, ce sont celles qui sont rétrogrades et de nature à inciter à violer les droits humains.

Pour terminer, une fois de plus merci Madame MUKANDEH pour votre Post. Comme vous l’aurez constaté, il suscite beaucoup de débats francs, et c’est très bien.

J’aurai souhaité que vous en débâtâmes face à face ; malheureusement Vous et Moi, sommes très éloignés l’une de l’autre. Avec l’autorisation d’Emily, je lui enverrai mes numéros de téléphones mobiles par lesquels vous pourrez me contacter pour plus de débat pour qu’Elle vous les transmette. En effet, je trouve qu’Il me sera difficile de m’entretenir avec vous sur Skype dans un Cybercafé.

Voudriez-vous m’informer où et comment vous entendez mettre en œuvre votre plan de sensibilisation contre le VIH/SIDA et l’excision ; en Sierra Léone ou à Londres ?

Bonne journée.

Joseph-Jacques.-

Mkandeh
Mar 18, 2016
Mar 18, 2016

Hi Joseph,

Thanks for your comments. Its always great having a male voice on such topic. It shows how great together we can make the change. Lets me make clear a point you did not get clear, My sick relative didn't know her HIV status before she got married. She only learnt about it when she fell ill of tuberculosis. Voluntary testing is not popular there. Many people are afraid to test because of the stigma attached to being HIV positive. I must say, there's been sensitization on voluntary testing.

Again you got me wrong to think that I an insinuating that patient who conceal are only Africans and or in Africa. The idea just got hooked on the fact that the focus of this article was Africans because firstly I feel connected because I am an African and secondly and most importantly it saddens me that such huge number of Africans are HIV positive.

Finally to your question, My advocacy platform is online media. Thanks very much for adding your voice to the debate. I do appreciate.

Me

Joseph-Jacques MUGEREKE KISAHIRA
Mar 21, 2016
Mar 21, 2016

English:

Hello, MKANDER.

Thank you very much for your response and especially for your correctness.

Indeed, all women and Man we are capable of many changes.

Good day to you Madam.

Joseph-Jacques.-

French :

Bonjour, MKANDER.

Merci beaucoup pour votre réponse et surtout pour votre correction.

En effet, ensemble Femmes et Hommes, nous sommes capables de beaucoup de changements.

Bonne journée à Vous Madame.

Joseph-Jacques.-