A young woman in Uganda contracts HIV/AIDS and faces relentless prejudice that alters every aspect of her life. She is only one of the millions of young people whose physical challenges are multiplied by the cruelties of social discrimination.
Hello everyone. My name is Angella Musiimenta, and my interest in researching young people with HIV/AIDS is driven by the fact that the illness disproportionately affects young people, who are the future of every nation. According to the UNAIDS report of 2006, globally, 6,000 youth are infected with HIV/AIDS daily. Having grown up in Uganda, one of the sub-Saharan African countries that have been hard-hit by the HIV/AIDS pandemic, I have witnessed the burden of HIV/AIDS endured by young people. My research on the stigma and discrimination they experience suggests the urgent need for action.
I am sharing with you a real, practical experience from one of my research participants in Uganda, 2010.
HIV/AIDS stigma and discrimination in healthcare communities
It all started at a healthcare centre. Due to recurring symptoms, her doctor suspected she had AIDS and arranged her HIV/AIDS screening without her knowledge and consent. His guess was right; she had HIV/AIDS.
The doctor gave her some treatment for opportunistic infections and allowed her to return home without revealing that she was HIV/AIDS positive. The next time she came to this health centre, the atmosphere was very unwelcome; she could even see that the duty nurses were mocking her behind their counters. After a long and painful wait, she managed to see the doctor, who gave her some septrines and also rudely informed her that her disease is incurable. To her, this was an indirect way of saying, “Treatment or no treatment, you are going to die anyway.”
HIV/AIDS stigma and discrimination in families
The news of her HIV/AIDS status had reached home first before she came back from the health centre. In her own home, this young girl living with HIV/AIDS experienced family rejection and furious accusations from her own parents and siblings. Her family members emphasised that she must only use her own plates, cups, soap, basin etc. She also had to drop out of her high school since her father claimed that he would not spend his money on a “moving corpse.” After one year, as if the isolation and rejection were not enough of a punishment, her father expelled her from his home, claiming that if she remained, her young siblings would follow her footsteps and get AIDS too.
HIV/AIDS stigma and discrimination in schools
After her father’s expulsion from home, she ran to her aunt’s home. Her aunt decided to re-enroll her at the high school. When news of her HIV/AIDS status reached her school, she started experiencing mockery, offensive comments, harassment and abuse from her schoolmates. She also reported being excluded from participating in some school activities, just because she had AIDS.
HIV/AIDS stigma and discrimination in employment
Getting a job after school was not easy for her. After suspecting that she was denied jobs from the local businesses because of her HIV/AIDS status, she decided to look for a job in a distant town. She got the job, but after her employer and workmates learned of her HIV/AIDS, things never remained the same; she suffered rejection and offensive comments from workmates, and eventually, her employer terminated her employment.
HIV/AIDS stigma and discrimination in religious communities
Instead of love and compassion from religious groups, the young girl instead was perceived to have brought double portions of shame, disgrace and reproach to her religion. She was blamed for moral and religious irresponsibility. Religious groups generally considered her as a sinner paying for her sins, as they believed that her AIDS is curse from God inflicted on fornicators.
In fear of stigma and discrimination, she stopped seeking for treatment and refrained from disclosing her status. She went into prostitution; selling her body, often in unprotected sex, to earn money for a living.
Stigma and discrimination did not help her prevent or manage her HIV/AIDS infections, and it did not stop her from infecting other people with HIV/AIDS. She felt hurt and psychologically tortured.
Given the opportunity, she would like to prevent new HIV/AIDS infections and re-infection, seek medical treatment and live a happier and purposeful life like any other young person.
AIDS is no longer the disease of “other”; today it is her, tomorrow it could be you, it could be me, it could be your relative, or your friend living with HIV/AIDS. We all have a role to play. Now is the time to protect the rights of young people living with HIV/AIDS.
You can help by sharing your opinions in this blog. In preparation for the upcoming World Youth Conference in Mexico (Aug 23-28), we, the young activists of positive living, request your opinions about this crucial yet often neglected area of empowering and protecting the rights of young people living with HIV/AIDS. Join this conversation online, it is a great way to share your ideas with the international community that is committed to ensuring positive living among young people all over the world. Remember there is no right or wrong opinion; anything you write down counts. We will be very grateful if you can take some time and share your opinions on the following questions:
Strategies for discussion include, but are not limited to:
- Community mobilization, education and advocacy aimed at reducing stigmatising attitudes and discriminatory actions.
- Recruitment and training of HIV/AIDS positive young people themselves as community health workers to provide social support for lobbying and advocacy for stigma reduction and fighting for the rights young people living with HIV/AIDS.
Topics of discussions in this empowerment include, but are not limited to:
- Helping young people living with HIV/AIDS get access to HIV/AIDS treatments from friendly healthcare environments.
- Helping young people living with HIV/AIDS prevent new infections/re-infections, adhere to their treatments and prevent further spreading of the disease.
- Capacity-building and provision of financial support to help HIV/AIDS positive young people live happier and purposeful lives.
- Mobilising community-based confidential screening tests, HIV/AIDS counselling and provision of post-test services to young people infected with HIV/AIDS.
- Provision of pastoral care and psychosocial support to help HIV/AIDS positive young people cope with their illnesses and deal with stigma and discrimination.
Thank you for taking your time to share your opinions with us.
I am a health informatics lecturer and researcher based at Mbarara University, Uganda, but I am currently finalising my PhD at the University of Manchester, United Kingdom. My research interests include evaluating interventions for HIV/AIDS prevention, treatment, and stigma & discrimination, especially those targeting young people.