Caroline, Kenya: Living again and pursuing dreams

Caroline Sande, known in workshop circles as ‘Caring Carole’, is one of the Kenya national stigma trainers. Caroline is living positively with HIV:

In 1997, I tested HIV positive. In 2000, I accepted my status and in 2001, I went public. This is certainly the most remarkable metamorphosis in my life! I did not believe that I could fix my life, which was completely in tatters. I have struggled and experienced all forms of stigma and discrimination, but it has shaped who I am today.

  • Whenever I see or hear the word stigma, it sends chills down my spine. While still battling with denial in the year 2000, my immediate next-door neighbour decided to publicise my HIV status in the neighbourhood.

    It became a very big issue that ended up in court. A lawyer volunteered and took up the case on my behalf. Justice was done and I won the case. My small baby girl who is a product of PMTCT [prevention of mother-to-child transmission] and is HIV negative could not get admission into the public schools because of my seropositive HIV status and the fact that I am a public figure, I thus decided to enrol her in a private school and she is very intelligent and doing quite well.

  • A neighbour decided to teach her daughter to tease my small baby that I have AIDS and that I was soon going to die. I countered this by teaching my daughter that whenever she was playing with this other child who insulted or ridiculed her, she responds by telling her that her parents also have AIDS and it is just that they have not gone for voluntary counselling and testing to know their status. The insults faded and as I am writing, we are the best of friends with this family and they even come to my place for counselling.
  • My neighbours pressured my landlord to have me evicted from the rented premises for fear that I was going to infect them through casual contact by using the same cloth lines, toilet, washrooms and taps among other things. I filed a court case for injunction at the Rent Restriction Department and my prayers were heard. I won the case and continued living in the same premises for two years until I decided on my own accord after locating a better place.
  • A bus conductor who knew my status decided to insult me in a crowded bus because of my HIV status. Passengers on the bus came to my defence and forced him to drive to their bus company offices. The conductor received disciplinary measures accordingly.

Despite all these challenges, I decided I would live again for my children and pursue my dream in education. I am currently on campus taking a degree in psychology and counselling. I am also quite active in HIV/AIDS public advocacy and facilitation with various national and international organisations responding to HIV/AIDS.

I have been and I am a symbol of hope for other people living with HIV struggling in denial. I am in the heart of fighting for the rights of people living with HIV because I know what it means to go through stigma and discrimination.

I am a camera with its shutter open, quite actively recording; recording the injustices of society against those living with the virus. Some day, all my shots will be developed, carefully printed for the sake of people living with HIV. We should fight the stigma and discrimination which leads to loss of friends, jobs, insurance, mortgages and homes, among other things.

Let’s keep the struggle and use available opportunities to know our rights and use the right channels without shame. This way, the truth will reveal itself. HIV does not make us special and should not deny us our God-given rights.

This is the story I would tell. We have viewed HIV and AIDS with an extreme fear, or rather, as a curse to the promiscuous and the careless in society. My friends and I know that everybody and anybody can be infected.