Column: The COLUMN
Journey So Far…
In the early 1980s, the southern part of Uganda was hit by a ‘strange’ phenomenon. Being at the border of Uganda and Tanzania, it was believed that a group of Ugandans had ‘misbehaved’ having crossed to the Tanzanian side. A ‘jjini’ (bad omen, supernatural powers) was sent to the Ugandans and their respective communities in retaliation. Months later, hundreds of people were dying under unclear circumstances. However, the deceased presented similar symptoms; rapid weight loss shortly before their death. Hence, the locals named this new disease ‘silimu’, a phrase coined from the English word ‘Slim’ due to the small appearance of the patients. Crossing over to the western part of the world, the US Centres for Disease Control and Prevention (CDC) had on 5th June 1981 officially reported the first five cases of what later became known as ‘Acquired Immune Deficiency Syndrome, (AIDS)’ among some gay men. This report heralded the HIV/AIDS pandemic. Coincidentally, it was the same scourge that had hit the southern part of Uganda. Nonetheless, even after the government intervention, the locals continuously associated this ‘strange’ illness with witchcraft or even bad luck on the side of the victims. Consequently, many families started abandoning their own relatives and migrated to other neighbourhoods once one of them started showing signs or symptoms of ‘silimu’. This was done to avoid transferring the bad luck to the rest of the family members. This was the origin of stigma and discrimination against People Living with HIV/AIDS (PLHIV) in Uganda. Nearly 40 years later, the stigma still exits. It is both internal and external. External stigma manifests in the negative attitude and belief towards people living with HIV, labelling them as socially unacceptable, making judgments upon those who get infected because of their perceived ‘wrong’ life choices, making moral judgments about those trying to prevent HIV transmission, to mention but a few. Internal stigma is characterised by loss of hope, selfcondemnation and suicidal thoughts especially among those patients who have just been tested positive. Discrimination involves treating people living with HIV differently than those without HIV, the behaviours that result from those attitudes or beliefs like distancing oneself from people living with HIV, health care providers refusing to treat them, not having casual contacts with them and referring to them as HIV Positives or HIVers, to mention but a few. My twin sister and I were born with HIV to a HIV Positive mother who had apparently contracted the virus through blood transfusion. As a young woman born and living with HIV, I have had my fair
By Eva Nakato
share of stigma and discrimination. The more people found out about my status, the more they stigmatised and discriminated against me. About 3 years ago, a job opportunity came up and I attempted take it on. However, a friend of mine who was already working in the organisation immediately disclosed my status to the team leader. The team leader suggested that I don’t take on the job since some of his employees had seen me on TV before from where I had disclosed my status and that they were going to make my life uncomfortable. Consequently, I painfully abandoned the opportunity despite my dire need for a job then! As teenagers, a neighbour once told her sons to stop being around my twin sister and I because she suspected us to be HIV positive. When the boys asked their mother how she got to know about our status, she simply stated that she had always seen my twin sister and I travelling to town on some specific days of the month and that it was obvious to her that we were heading to the hospital to pick our ARVs! Also, whenever I would have misunderstandings with friends they would use it as an opportunity to use demeaning remarks like ‘…after all you’re HIV positive, what can you do?’ Some of my boyfriends also considered me the ‘desperate one’ and hence they hardly valued my inputs in some of the relationships. Over time, I have developed a thick skin and I have been able to overcome the stigma and discrimination due to my HIV status. Some of the People Living with HIV are yet to undergo this transformation as well. As we continue to do what we do, we should note that the attitudes and behaviours that discriminate and stigmatise people living with HIV is extremely dangerous. I believe we can continue talking about HIV openly especially in rural areas to help normalise the subject and help correct misconceptions about it. This will also help people learn more about the dangers of HIV stigma and discrimination. As a parent, I plan on teaching my son how to treat and live around people living with HIV. I know for sure that one day he will come across interviews of me sharing my story and I would like to prepare him on how to deal and respond to what people will say. Despite all the stigma and discrimination, I have lived a very normal life. I have studied, graduated and now have a healthy HIV negative son thanks to the effective prevention interventions like Prevention of Mother To Child Transmission (PMTCT) and Anti-retroviral drugs (ARVs), among others. In this journey, I have learned to respect and treat people the way I would want to be treated.
Eva Nakato is a Ugandan based writer and she wants to read from you so write her through info@thevoicenewsmagazine.com www.thevoicenewsmagazine.com
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