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Friday, August 13th, 2010 - 12 comments

Stigma and discrimination surrounding HIV/AIDS

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.

Context

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.

The consequences

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.

  • How can we work together to reduce HIV/AIDS-related stigma and discrimination?

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.

  • How do I personally help reduce HIV/AIDS-related stigma and discrimination?

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:

  • How can we reduce prejudicial and stigmatising attitudes and discriminatory actions in communities against young people living with HIV/AIDS?

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.

  • How can communities work together to empower young people living with HIV/AIDS especially those who choose to be open about their HIV status?

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.

The views expressed in this blog-post are solely those of the author.

Comments (12)

Olive
Wednesday 18th August, 2010, 4:30pm

Thank you for the interesting research Angella and for your efforts in playing a part in improving the lives of young people living with Aids.

What came to mind with respect to reducing prejudice and stigma is affirmative action- where there is positive discrimination in favour of people living with Aids.
I remember growing up and being cautioned about saying anything negative about a physically handicapped person or person with disabilities. It was considered rude to describe someone as such. Disabled people themselves lacked self confidence and even if one had a child with such a condition, they would deliberately keep them out of the lime light.Then came a time where affirmative action was introduced for elective offices , even for positions on certain Boards and Commissions. Amazingly, over- night , the stigma was gone, there was no more prejudice. Those who had disabilities openly said so to the point that even some people would strive to prove that they are disabled by disclosing some little thing that would qualify them to be termed a person with disabilities.

My thinking therefore, is that if there are positions set apart for persons living with HIV/ Aids, then it would greatly help to reduce the stigma for example a percentage of slots to public universities, a percentage for positions for elective offices, civil service jobs etc that may help.

Sana Sohail
Thursday 19th August, 2010, 9:40am

I am a 25 years young human rights and SRHR Activist founding member of a youth led organization named Chanan Development Association (CDA).
"The mission of CDA is to "improve the status of youth particularly young women enabling them to equally and actively participate in planning, management, decision / policy making and execution of their plans without any biases of gender, religion, status, or language for the creation of a healthy, just, peaceful, and democratic society"
Our major focus area is Health Reproductive Health and Rights of young people including HIV/AIDs Awareness raising among them to prevent young people from HIV/AIDs because young people in Pakistan are most at risk. We are also using a technique of Interactive Theatre, Photography and community Film making Skills to equip young people’s capacities, knowledge and skills to empower and prevent themselves from HIV/AIDs.
We are also focusing on access of young people to reproductive health information and services to improve the status of their health and to promote healthy behaviors and life styles.
We also implementing a Theatre oriented project titled “Save pregnant women and new baby born” to raise awareness on Safe Motherhood in the communities. in this project we are doing a theatre performance in communities to aware them on Save pregnancy and care of new baby born child.

Joab Chakhaza
Thursday 19th August, 2010, 9:49am

The scenario above is sad but very real. I believe people in leadership positions are key in bringing change in this regard. I believe there is need to educate people in leadership roles on how they can put AIDS patients or those with HIV in challenging positions so as to demonstrate to others that they can also do what anybody else can do. Africans have a huge respect for people in leadership. They would change their perceptions if they notice senior members of society are embracing those whom they ostracize.

Robert
Thursday 19th August, 2010, 10:10am

This is a sad reality yet I find a bit of hope here. The reality is being from sub-Saharan Africa myself, the setting is different but the storyline is all too familiar with me too dear. The hope stems from the fact that we all now know now that HIV and Aids uses the same tools to fight us and divide us; ignorance, fear, stigma amongst other weapons that fight our will to survive and thrive; however, knowing what is in one's arsenal is winning half the battle. With youth who disseminate powerful stories and messages of change and hope and reversal of iniquitous tendencies like stigma, the future will slowly be positively polluted by the same messages of hope, acceptance and change that you possess. It will take time but we will get there one step at a time.

Allen
Thursday 19th August, 2010, 2:16pm

Thank you Angella for these vital illuminations.

For community education, People Living With HIV/AIDS (PLWHA) can be recruited and trained as community health workers, then these can identify and recruit their peers and mobilise them into groups. These self help groups then provide social support for lobbying and advocacy to reduce stigma and fight for the rights of PLWHA. They can then educate community members about the importance of respecting the rights of people living with AIDS, this group can also be a source of encouragement of other community members living with AIDS. As long the community is taught about AIDS, I think this can reduce the silence and denial and eventually PLWHA will be accepted.

For capacity building and financial support, governments, in collaboration with AIDS-related organisations should enable PLWHAs to acquire group financial support to improve the economic status of their members. PLWHA can be trained in basic business skills so that they utilize the financial support effectively.

daniela jaramillo
Friday 20th August, 2010, 12:14am

Dear Angela, congratulations on your editorial. As i was reading i was wondering if there are studies comparing the stigma of a woman or a man? Are there any evidences showing that women are more prone to receiving this type of treatment by society than men?

Jena
Friday 20th August, 2010, 7:33pm

An essential piece of research Angella! I agree education, safe sex behaviours and financial support etc are crucial. I think as Africans (traditionally and as religious beings), we need to be a litte bit more liberal in our outlooks on life, as we can no longer afford the harsh judgementalism of past centuries. HIV/AIDS is a "modern" disease that became prominent mainly in the last 2 decades I think. It requires understanding and compassion in families, communities etc, for it to ever be controlled. Without this, there will just be more experiences of your research subject. Some sufferers in those circumstances just commit suicide, than wait for the disease to slowly take them. Good luck with your research!

Angella Musiimenta
Sunday 22nd August, 2010, 5:03pm

Thank you very much Olive, Sana, Joab, Robert, Allen, Daniela and Jena for these very interesting insights that you are coming up with. I have no doubt that together we can make a difference.

Olive thanks for this good idea of replicating the approach of “affirmative action” that helped in reducing stigma against the disabled populations. Olive particularly suggests allocating positions for young people living with HIV/AIDS e.g. in elective offices, public universities and civil society jobs. Colleagues, how do you see this approach?

Thanks Joab. O yea, we can use opinion leaders as role models to advocate for the rights of young people living with HIV/AIDS. Does any one know how we best involve opinion leaders in this context?

Thanks Robert and Allen. Correct, it is going to be a gradual process of change indeed. As Robert suggests, as youth, lets us arise and dismantle the prevailing myths and misconceptions surrounding the whole subject of HIV/AIDS. We can surely spread the messages of change in our families, schools, Churches, and our local communities…

Thanks Jena for your contribution. Indeed in some extreme cases, some have committed suicide due to this internalised stigma (Gilmore and Somerville, 1994); the psychological torture sometimes becomes unbearable for some people. How sad.

Thanks Daniela. Yes. Women carry not only the face of HIV/AIDS, but also disproportionately carry its burdens including the stigma and discrimination.
There is evidence of the persistent disproportionate global increase in feminisation of HIV/AIDS plus its disproportionate burdens (including stigma) endured by women compared to their male counterparts. In Uganda for example, according to UGASS report of 2006-2007, married people host the majority of new HIV/AIDS infections. Although this is mainly due to men’s extra-marital sexual practices, society continue to blame women as vectors of HIV/AIDS transmission. Consequently, some women are innocently thrown out of their families after their husbands have died of HIV/AIDS, while other are condemned for infecting their unborn babies. It is really a very unfair and unequal world, but me and you can make a difference.

Jena
Tuesday 31st August, 2010, 8:10am

I think we should show compassion to not only people living with HIV/AIDS but also maybe gays/lesbians too? The effect of society on them, is the same as the effect of society on people with HIV/AIDS. Also there is also an interesting link, as you know, between gays/lesbians and HIV/AIDS transmission. Lets be objective about it and for policy makers not to use the scriptures to oppress God's children i.e. people who are homosexual and/or HIV/AIDS sufferers! From a disease management point of view, the more we bring out these problems into the open, than driven underground, the better able we are to deal with them. Don't you agree, on the gay lesbian aspect? The latter should be embrassed than castigated?

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[...] HIV/AIDS-Related Stigma and Discrimination [...]

nantongo shamim
Friday 8th October, 2010, 9:44am

i believed that every one has a right to a healthy and happy life so no one shoud be discriminated against regardless of thier status. thank you so much

esther
Wednesday 23rd March, 2011, 8:09am

Agella,keep fight against stigma and discrimation burning.I have had stress over the same for sometime,am glad you are talking about it in regard to Health care,but you need to focus on it at workplace,organisations in Uganda don't treat this as a serious issue,they are only concerned about out puts.Many people who disclose their sero staus are tramatised for their status because those who discrimate don't know that tommorrow is them,there is need to focus on workplace HIV/AIDS policies.
Together in fight Against HIV/AIDS

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Guest Editor

Angella Musiimenta

About

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.

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