Faghmeda Miller is the first and only Muslim woman in South Africa to have disclosed her HIV status. She speaks to us about how she live with it.
It all started when I became infected with the AIDS virus in 1994 while happily married to my Malawian husband and living in Malawi. It was discovered only after his death that I too, like him, was infected. The first thing that went through my mind when they told me I’m positive was the shame I had brought on my family. I, therefore decided to keep this information to myself, after all it wouldn’t be long till I die.
Death, however, was not happening. I realised something was very wrong, no one told me that there is a difference between being HIV positive and having AIDS. I went back to the hospital looking for answers and was told that I can live a long productive life being HIV positive if I took good care of myself. I received counselling on a regular basis and slowly built up enough confidence, acceptance and courage to live.
My life and attitude as well as my personality changed. I had a mission and purpose to become a spokesperson for Muslims living with HIV/AIDS. I disclosed my status on a community radio station. It was met with mixed feelings as well as denial and often people would state that as a Muslim one could never contract this disease. However, nothing anyone has said or done could stop me from talking openly about my status and HIV/AIDS. It’s been a long and often lonely road for me, but I will never give up. I believe that eventually the Muslim community’s eyes would open and their attitude would change. That they would see the need for AIDS awareness/education programmes in our society.
I had three dreams and am fortunate to say that after living with HIV for the past 8 years I’ve achieved all of it. After many years of struggle my dream of starting a support group for Muslims living with HIV/AIDS was realised. I am so grateful for everyone who stood by me and supported me in getting the support group going. I decided to disclose my status not only for myself, but also for all other HIV positive Muslims who suffer the discrimination, stigmatisation and disrespect in our community. I have seen many HIV positive people die and often it would feel like a part of me is dying too, bit my will to survive and live positively is strong.
I don’t just help run the support group in our organisation Positive Muslims, I also do home counselling and awareness programmes in different communities. Often people in my community don’t want me to talk about my hardships and rejections suffered in the first few years of my disclosing, perhaps out of guilt, but what they don’t know is this that I am fighting harder, trying to change the mindset and behaviour of people, to allow those who want to disclose to have an easier acceptance in society than I have had. Today I no longer believe that HIV/AIDS is a curse from GOD like some religious leaders led me to believe. I in fact see it as a blessing as it has given me an avenue to help others no matter what the obstacles and I appreciate life like I have never before.
My second dream to write a book about my past 8 years as a HIV positive woman and though I have completed this, it’s not been published, I feel the time is not right for this yet. My last dream was to fulfil my holy pilgrimage to Mecca and this I completed with pride, showing that one can achieve anything you set your mind to, regardless of your HIV status.
I’ve done several television programmes locally and internationally, appeared in various magazines, newspapers, pamphlets and documentaries and on all radio broadcasters in Cape Town and Johannesburg. I have my own documentary “The Malawian kiss” right on the top of my list. Yet I still feel that I haven’t achieved enough, to encourage people to talk openly about their status, even though one magazine referred to me as the lady “Setting the lead to save a nation”.
In the year 2000 I received the Femina “Women of Courage” Award and was nominated for “Women that made difference” in their community.
People often compliment me on my good health and although I am a picture of good health I often experience problems like fevers, swollen feet and hands, but still nothing stops me from jumping up when another PLWA needs help or advice and often I escort them to their doctors.
I still remain at the end o the day, the shy girl my family knows best with her sole purpose being to be as outspoken as humanly possible about HIV/AIDS. I believe that soon there will be a cure for those infected, but also that it won’t be available I time for me.
The tragic story of Saleem
Saleem* of Rylands in Cape Town was certified HIV positive with full blown AIDS. While still in the care of Groote Schuur Hospital, his parents, two brothers and a sister rejected him. He was told not to return home and to find his own way. The hospital could do no more for Saleem. He was taken in by a hospice run by non-Muslim social workers and cared for.
Repeated attempts by the social workers and Saleem to contact his family led to no response. Saleem was so disgusted and felt so dejected by his Muslim family’s attitude that he decided to renounce the Islamic faith. He drew up a will in which he stated that he wished to have his body cremated. By the time his parents reached Goodall & Williams cremation centre in Maitland to claim his body, they were offered Saleem’s ashes in an urn. His parents refused to pay for the urn so the ashes were transferred into a paper bag. His Muslim parents did not know what to do with the paper bag of ashes. Saleem was only twenty- nine years of age (* Some details have been changed to honour the family’s request for anonymity).
AIDS has no respect for boundaries of class, race or religion. It has affected millions of people around the world and continues to destroy the lives of thousands more on a daily basis. AIDS is therefore a crisis of bewildering proportions. Since the time it was first detected in June 1981 the pandemic has widened its circle. There is hardly a sphere of human concern that has escaped unscathed from its devastating impact. Today, every facet of society, including law, medicine, politics and religion, is implicated in issues arising out of AIDS.
In South Africa, HIV / AIDS represents one of the greatest threats to the country’s future with close to 3 million men, women and children infected by the end of 1997 and as many as 1 500 new infections occurring on a daily basis. The first cases of AIDS identified in South Africa were in 1982 amongst homosexual men. The majority of HIV transmissions in South Africa today occur heterosexually. Socioeconomic inequalities as well as political factors have played, and continue to play a substantial role in the spread of HIV/AIDS, resulting in women and poorer communities being more vulnerable to infection than other groups. (from www.positivemuslims.org.za)