FIGHTING STIGMA THROUGH PUBLIC DISPLAY
Barbra has been in a discordant relationship for over 7 years.
Barbara Kemigisa was orphaned at a very early age and was brought up by her aunt who looked after a large family. At the age of 6, her uncles began to serially defile her. While at school, she had an uncontrollable desire for sex forcing her to introduce her schoolmates to sex. This was abnormal behavior which earned her beatings and unpleasant name calling from her family and teachers.
Oblivious to her tormentors, Barbara was a victim of defilement which made her sexually active at an early age. She got pregnant at 15 years of age but terminated the pregnancy. She became pregnant again and had a baby although she was frequently ill and was in and out of hospital. Unfortunately, her and the baby were found to be HIV positive. Barbara was devastated as she had never thought of being HIV positive.
To make matters worse, at a time when her world came crumbling down, her family sent her away from home. “I was so frightened and did not know what to do at that time until I was linked to Baylor-Uganda COE by the health worker at acute ward in Mulago hospital” Barbra recalls while clenching her fists.
She narrated that her baby was only eight months then and was started on treatment. She endeavored to attend clinic appointments and adhere to her medicines so as to be strong for her baby. When she list expected it, Barbara found love and a new family at the COE. “Life greatly improved for me and my child who is now seven years old’, she explains adding that her daughter now advocates for the fight against stigma through music.
She diligently took her drugs and was determined to achieve zero viral load in order to get married to an HIV negative man and give birth to HIV negative children. Today, Barbara has realized her dream and advocates for adherence as to her, its either ‘medication or die’. She preaches against self-pity because she strongly believes that it is more deadly than HIV itself. Although she got married, none of her husband’s family attended the wedding because they could not figure out why their son would marry an HIV infected woman. Barbra recounts that this did not distress her as she was bent on building their relationship irrespective of what people said.
All this stigmatization instigated Barbra to act. She was determined to fight against stigma for People Living with HIV. “I needed to show people that having the virus does not mean you will die tomorrow. I then decided to encourage people but I had to start with myself’. Barbara notes as she recalls the time she began her activism with in her community in Katooke, Nabweru parish were she has set an NGO called the Pill Power to fight stigma and encourage PLHIVs to adhere to their drugs while using herself as an example. To get her point across, Barbara has uniquely accessorized her hairstyle with a badge written “I am HIV positive”. She also carries an artistic design of empty ARV tins lined on a string to catch people’s attention to stop and ask what she is up to and thus sharing with them the need to stop stigma for PLHIV.
She is living a complete life – married to an HIV negative man and is soon welcoming their second child only because of her determination to be virally suppressed so that she doesn’t pass on the virus to her husband. Barbra believes that if there is good adherence, we shall realize zero viral load. She is however concerned that just half of the PLHIVs in Uganda have been enrolled on treatment and calls upon all to promote, advocate and encourage early treatment of HIV irrespective of CD4 in order to achieve viral suppression.
I am a testimony for the young people to realize that if you change your attitude about life and neglect your fears, you can actually live a normal life just like any HIV negative person’ Barbra Kemigisa