Indonesia, the world's most populous Muslim country, has one of the fastest growing HIV epidemics in Asia, and women are increasingly affected. In 2006 Indonesia's Ministry of Health reported 6,604 cases of AIDS among males and 1,529 among females. By 2011 the total numbers were 19,139 males and 7,255 females.
Last year, the Indonesian Positive Women's Network, Ikatan Perempuan Positif Indonesia (IPPI), conducted peer-based research among 122 women living with HIV in eight provinces to highlight violence against women living with HIV. Of the women included in the study, 64% had experienced some form of violence including: forced sterilization 14%; sexual violence 30%; other forms of physical violence 25%; psychological violence 31%. Women spoke openly about their experiences, knowing we would respect their stories:
“My husband came home drunk. He had promised to take my child to the doctor but he came home late that night. We fought and he strangled, beat, and even trampled me. Now I’m unable to use one of my legs.”
“My husband made me have sex with one of his friends where he usually buys drugs.”
“My husband swears at me, 'Die you infidel dog', because I don’t tell him how much I earn if I secretly give money to my child.”
In a second study "Positive and pregnant - How dare you", conducted with 757 pregnant women living with HIV in six Asian countries, many of the 109 Indonesian women participants recounted experiences of verbal abuse and physical neglect by staff before, during and after their delivery.
“I felt very sad. The nursing staff wrapped my baby in plastic because they did not want the blood to get anywhere. I never thought that this kind of situation would happen to my baby and me.”
This study found that most Indonesian women were not given the option to have a vaginal delivery. Because the cost of a caesarean section is prohibitively expensive for many women, some did not reveal their HIV status in order to avoid what they perceived to be a mandatory referral for a caesarean.
“The doctor yelled at me for not having said I am HIV-positive and scolded me that if I had said something earlier, they could have handled the delivery in a more ‘appropriate’ way...That was why I had not told them I was HIV-positive, because I could not afford the caesarean. Lucky for me I was already dilated eight centimetres and it was too late to do anything.”
Of the 109 Indonesian women surveyed, 44 said they were encouraged to consider sterilisation. Women who had a caesarean section were significantly more likely to be asked to get sterilised. Most recommendations for sterilisation came from gynaecologists and HIV clinicians and most women believed the recommendation was made on the basis of their HIV-positive status.
“I was sterilised and they told me to sign the agreement without any counselling.”
Currently in Indonesia violence against women is not integrated into the response to HIV. Indonesia has many islands with diverse cultural and religious differences; in some regions Sharia law is in place and sometimes men do not understand the issues of gender-based violence so it is challenging to address the problem. Women faced with gender-based violence are not provided with HIV information or referral services. Sometimes it is hard for women with HIV to understand that what they have experienced can be classed as gender-based violence, since it is so much the norm. Moreover, women living with HIV are unable to speak out about the violence they face because they fear their HIV status will be disclosed if they do so.
In response to all these findings, in late 2011, IPPI members protested at the National AIDS Summit to raise the issue of forced sterilisation, and they conducted a CEDAW training workshop; training of trainers; and sexual and reproductive health and rights training in ten provinces. IPPI also produced a film documenting violence against women, “HARUS”, to be used as an advocacy tool.
IPPI is now a partner of the national violence against women commission (KOMNAS Perempuan), as well as a member of the CEDAW Working Group Indonesia (CWGI). The National AIDS Council (NAC) has also included IPPI as a member and involved them in the policy planning process. However, lack of funding is an on-going challenge and there is no capacity building for women's participation on the team.
IPPI successfully collaborated with CWGI to integrate these violence against women living with HIV research findings into Indonesia's CEDAW NGO Shadow Report. They are the first HIV-positive women's group in south-east Asia to do so. Furthermore, Indonesia's new Minister of Health has committed to resolving sterilisation issues together with women living with HIV and the NAC is currently preparing an action plan for Indonesia's HIV prevention program that will have a strong gender perspective.
“Recognizing the rights of women living with HIV is not solely just providing them with access to care and treatment. We should respect their dignity and their right to have children as much as other women. We still found many cases where women living with HIV became victims of violence. It is our responsibility to address it because violence against women living with HIV and forced sterilization is not just violence against women but it is violence against humanity. We urge all state members of UN to make an appropriate commitment and action to eliminate violence against women living with HIV.”
(Oral statement by IPPI for CWGI report on CEDAW 2012)
Our country has a long way to go. These are painful memories for the women who spoke to us – and there is often pain relived in their telling. But in Indonesia we have a proverb – “"Dimana ada kemauan, di situ ada jalan" – where there is a will there is a way. We trust that using the stories of these courageous women through the CEDAW process to uphold the rights of all women with HIV will enable us to begin to break the silence.