The Survivor: An Interview with Ayu Oktariani

Stigma has always been imprinted around people living with HIV; it discourages them to live life to the fullest, it discourages them to be happy. But, when we meet Ayu Oktariani, a woman living with HIV, she breaks all the labels that have been sticked to them. She has this freaky positive vibes and spirit that illuminates the room as she speak about her passion in HIV activism. No stigma can ever break this lady. We interviewed her to know more about her activism journey and on spreading the positivity.

Illustration of Ayu Oktariani.

Illustration of Ayu Oktariani.

1.   When you found out that you are HIV positive, what was the first thing that came into your mind?

I knew that I was infected in 2009, it was around 7 years ago. The first thing that came into my mind, was being afraid. I was afraid of death. During that time, my husband was in the critical condition and I was very afraid that I would lose him. Personally, I was really confused and didn’t know what to do to look for the solution. And then I decided to do nothing as I was worried that I might take a wrong step and worsen the situation. I got a lot of help from both my parents for all the issues regarding medical check-up and support to keep on living.


2.   How did you get into HIV activism?

At that time, I didn’t join HIV activism right away. There was a one year gap after I had found out about my HIV status. During that time, I didn’t join any support group because my heart was full with doubts. Until one day, one of my friends asked me to join a peer support group on HIV. According to my friend, by meeting other people who deals with the same issue as us, we could get new perspectives to accept ourselves and more information around HIV.

After meeting with the support group, my life got a turning point. Not only the way I saw HIV that has since changed, but also to accept myself as who I am. Through the support group, I also got a job opportunity to work in the peer-support group. As a support group worker, I work in certain areas at the hospital or local community health centre who has become a reference for HIV AIDS treatment. We help people who get affected by HIV, including their family, to access more information, gaining access to know about the care cycle, treatment and support.

In the next two years I joined “Ikatan Perempuan Positif Indonesia” (IPPI/ Indonesian Positive Women Network). A network for women living with HIV and affected by HIV, in Indonesia. The network focuses it work to advocate the rights of women living with HIV in all over Indonesia.


3.   What is the benefit that you can get from your activism work?

In the beginning, I got a lot of privileges, such as easy access for information about health directly from the doctors, new experiences and stories from People Living with HIV whom I work with. From those things, I rebuilt my life from the broken pieces. I could live and keep myself health. I could also understand the issues and problems experienced by People Living with HIV. For example: injustice in healthcare settings, family, and general society and of course the most familiar issues of all: stigma and discrimination. From there, I saw the opportunity to voice our issues louder, if we have access to the government or ministry of health. Through IPPI and Indonesia AIDS Coalition, I voice out my concern around the issues of HIV that comes from the community of People Living with HIV. For example, the frequent problems with access and distribution of ARV, violence against women living with HIV, human rights abuse to women living with HIV (for instance: forced sterilization)

With HIV activism, at least we, as women living with HIV, can increase our bargaining position in the eyes of the government. Through HIV activism, the chances to be heard is greater, and I can do more to make positive changes for those who are affected by HIV.  


4.   What is your proudest contribution that you can give for the community that you are advocating for?

There are several achievements on the work of HIV advocacy. But I didn’t do it alone, there was a team who helped me and of course the community of people living with HIV (PLHIV), and general society who have always given us support.

My biggest contribution that I considered as a proud moment for me was to be part of IPPI, part of the campaign: “PLHIV have the rights to Live Healthy”, and part of the Indonesia AIDS Coalition. Through those three things, my friends and I was able to push the change of policy in regard to the PLHIV community. We were able to advocate a number of things, like:

·       Pushed the government to pull up the distribution of ARV type D4T, in which according to WHO, was dangerous for HIV treatment. (

·       Clarified government officials statements regarding HIV, that could cause misperception on HIV. (

·       Advocate for access of medicine for Hepatitis C- Sofosbuvir that can be accessed by JKN (The National Health Insurance) (

·       Also, got the opportunity to speak in an International Forum to represent the PLHIV community. (

·       And I was also part of the Human Rights Council Panel, in Geneva 2015 (

But all of these, once again, couldn’t be done without the support from many people. I never walk alone.


5.   What's the biggest challenge for women living with HIV nowadays?

The biggest challenge at the moment is still about stigma and discrimination, whether it’s coming from family, society or health care providers. Access for funding is also a challenge for HIV-based organizations, as HIV and AIDS funding only targets key population. And it is quite hard for women and children to access the funding or resource for HIV programme. Though there are existing fund channels for women and children, but the programme can not cover the universal issues of women and children. The availability of equipment and understanding of health care providers on the issues of HIV, that is gender sensitive with human rights perspective, usually are the barriers in the field.


6.   What do you want people to know about Women Living with HIV?

A lot of people think women living with HIV as ‘double trouble’. We are considered as second-class citizen. One is because we are women, who are tend to be stigmatized as bearers of problems for the family, and another is the fact that we are affected by HIV. While, in fact, most women in Indonesia got affected by HIV from their partners. I really want the society to understand that we have rights and should have the same opportunity with other women and other members of society in Indonesia who are not infected by HIV. We have the right to work, accessing the education system, to marry and not to marry, to have and not have children. We can be married and make a family and have children of our own without transmitting HIV to our partner or our children, as long as we do the HIV prevention program correctly.

I want health care providers to know that when a woman got infected by HIV, they can help us by not only giving us the retroviral medicine, but also educate us about the importance of sexual and reproductive health (SRHR). We usually get those SRHR information from the community, and not from doctors. This is because there are way too many doctors that think if a woman is HIV positive, then she no longer needs to have children.  Many doctors also have said that women living HIV dont need to breastfeed their children, and suggested us to sterilize ourself.


7.   How do you cope with stigma that is attached to women living with HIV?

I encourage myself to be open about my HIV status and my daily lives, for general public. I regularly write in my personal blog ( and active to talk in diverse forum  (from scientific forum, education forum, to the general public and society for my community, networks for women living with HIV, etc). I think it’s very important to show the real face of HIV issues, so people know that HIV is not only about behavioral problems, but how the risk of HIV is also high even for those who ignore this issues.


8.   As a mother of a beautiful daughter, how do you handle your role as a mother and as a woman who work as an HIV activist?

I try to accustom my daughter to always be honest and always be herself. I showed her that even though her mother is infected by HIV, she shouldn’t be ashamed about it. This is because HIV doesn’t limit us and weaken us as a human in the eye of God and other human beings. We can learn from the injustice treatment experienced by our friends who are HIV positive and learn how to give more to others. I also taught them about the diversity in Indonesia. Also taught her that life is not all about us, but we live together with other people with different background and cultures that shaped their own daily lives. I told her that existing differences of one another are not to be discriminated.


9.   As a mother of one (soon-to-be two), what’s your expectation for your children?

Certainly regards the health aspect. Because through the pregnancy program that my partner and I have been following, I hope that our child can be born healthy and not infected by HIV, though the mother is HIV positive. I don’t have too many expectations for my children in the future, I just want them to grow healthy and happy. They can get their rights as children, so they can love their family, being loved, become their true self, and also able to live in diversity so they can share love and compassion to all people in their lives.


Freaks & GeeksKevinIssue#01