HIV Disclosure Project Workshop at PWN USA Speak Up Summit
Photograph Courtesy of Wanda Brendle- Moss (Wanda did not attend the workshop)
We approached Positive Women’s Network several months ago and asked if they would be interested in having us at their Speak Up summit to not only attend sessions and learn, but to continue the discussion about disclosing HIV status to potential sex partners. The struggles are the same regardless of where one lives and we wanted to share the tools we have and in the process learn from the participants as the workshops are continually being updated to address current needs.
We were fortunate enough to get a ninety minute time slot at the Speak Up summit organized by the Positive Women’s Network USA . The workshops is usually a day long affair but given the energy, motivation and eagerness of the participants, we were able to get focused on key points, get right into the activities including role play scenarios. The role plays were powerful demonstrations of the complexities of disclosing one’s HIV status to sex partners, as participants used their personal experiences which allowed for a more meaningful personal connection. Each participant shared their unique story.
We did not get signed consent to use photographs in the workshop or to quote anyone directly, therefore out of respect for confidentiality of participants this is a summary of the themes and complexities which arose during the session.
From the beginning of the session and throughout there was lots of laughter in spite of the discussion which is always painful, emotional and criminal in some situations. Laughter is a key component of the workshops and the women in this workshop brought their sense of humour and then some. As the role play and activities got underway the following are major themes which were observed and articulated throughout:
Success stories were shared with disclosure as some of the women attending were happily involved in relationships or marriages to partners who were not necessarily HIV positive. The women had prior experience with disclosure to potential sex partners and understood the need to continue this discussion for the well being of other women, the HIV community and society as a whole.
The desire to have a successful disclosure without stigma, rejection and threats of criminalization and the ultimate desire and need to have intimacy and sex is part of daily life. For many women living with HIV this is no longer considered a basic human need as it is replaced with fear and anxiety and ultimately isolation.
Criminalization was a topic as there was a participant who did go through the criminal justice system for non disclosure. Her description of what took place was one which has been experienced by many others and is unfortunately all too common. She disclosed her status to ensure the sex partner was well informed, but later the partner insisted they were not when the relationship ended. This described experience demonstrates the vulnerability of people living with HIV. It highlights the vulnerability of women and men in disclosure situations, as it creates anxiety, because disclosing alone, to a trusted sex partner, may not be enough.
Fear of stigma, rejection and complete isolation from family members and the community was a real concern. More than once it was mentioned how disclosure was a terrifying topic and one which was avoided because participants observed what happened to other family members or friends in the community when their HIV status went public. They were afraid they would experience the same hostility if they dared to disclose.
This was the first time the workshop was offered to a group consisting of women only and although disclosure has overall similarities and outcomes which are universal, the goal is not to decide which key population is more deeply affected.There is consensus that we are all affected by disclosure. There were however themes present which were specific to women.The power imbalances, fear and extreme vulnerabilities for women in particular were highlighted. Women not only risk losing their children,they do in some instances lose their children if they are criminalized for non disclosure. Being physically harmed or threatened, losing employment and in turn not being able to financially support their families is a lived experience.Being forced to remain in unhealthy relationships as the threat of HIV disclosure to the public was and continues to be used as leverage to remain in the relationship.Being rejected on many levels and ultimately left in isolation to struggle with the complexities associated with people living with HIV is a real concern which does take place more often than we care to acknowledge.
A well guarded secret that was mentioned more than once in the workshop is that women most often cannot transmit the HIV virus. This was part of the irony discussed throughout the workshop as experiences were shared and played out.
After experiences and vulnerabilities were role played the discussion quickly moved on to examining positive change.This was not a group of women who considered themselves victims. This was a group of women who were strong, resilient and looking for solutions.
The key question was – how can we make the process of disclosure safer and easier for everyone? There was consensus as there always is in the workshops, that there needs to be more dialogue with the general public to resolve disclosure complexities. People living with HIV did not set up an environment and checks and balances where disclosure is a no win situation. There was consensus as there always is in disclosure workshops that participants want to disclose but do not know what to do or how to approach the topic when the time comes to disclose to a potential sex partner. There was discussion of putting our HIV status on a dating profile and just being open about it. This works for some but for most participants it was not an option at the present time or their dating site profile fell silent when their status was posted.
Participants in this workshop and in others felt that we are “preaching to the converted”. In an ideal world there would be no need to disclose HIV status to anyone, let alone sex partners. But in real time and until we have ideal circumstances, disclosure has to take place at some point. Participants discussed ways in which the workshop can include and be available for the general public as an educational tool and in our work as advocates and activists. If the general public and specific structures and governmental departments were made aware of the complexities, there could be a better understanding and shift towards reacting differently when a person living with HIV discloses their status to a potential sex partner. There could be a shift towards decriminalizing HIV. Although this comment did not come from this particular workshop, it does certainly pertain – “Are we going to criminalize someone when the say “I’ll call you”, “I love you”, “I will still respect you after we have sex”?
The present system is not working, it does in fact make disclosure more difficult, it reinforces all of the vulnerabilities mentioned above. We are not screening mechanisms or safety nets for the negative community to go about their business having stress free sex, with the assumption that people living with HIV are obligated on many levels to keep everyone safe. We cannot and will not wear a sign around our neck disclosing our HIV status to placate the public This thinking is flawed and change in public perception needs to take place.Experience shows that doing it on our own is simply not working, our quality of life is affected, our safety is affected and the ease with which we are labelled criminals is nothing short of terrifying. People have sex on a regular basis, including people living with HIV. Depriving people of the basic need for intimacy and sex is to understate – a violation of basic human rights.
Where do we go from here?
We need to keep the discussion of disclosure complexities going and involve more people in the discussion, particularly policy makers, legislators and the general public.We invite crown prosecutors and any other officials involved with HIV at governmental, organizational and community levels to join us for a workshop. We encourage engagement, meaningful dialogue and a shared effort to seek ways in which people living with HIV can have sex, free of stigma, fear, criminalization and isolation. We are sincere in our attempts to educate the public, beginning in our local communities where we will invite people to attend the workshops, to help the public better understand disclosure complexities and work together with us to make some needed changes.Being educated and enlightened will lead to more informed decisions, while recognizing that people living with HIV are simply looking for intimacy and sex, to feel loved and “normal”, like everyone else.
The strength and resiliency of the women in the workshop was a clear indication that when faced with controversy they will not back down.
“All women. All Rights”
You can find more information on PWN USA website here: http://pwnusa.wordpress.com/
You can find PWN USA on Facebook here: http://on.fb.me/1rDz4VL
You can download the Positive Sex manual from Canadian Treatment Access Council here: http://ctac.ca/our-issues/key-populations–barriers-to-care/positive-sex
Thank you Wanda for allowing us to use your photograph.
Thank you PWN USA for giving us a space to learn, collaborate and share our voice at the Speak Up Summit.
HIV Disclosure Project Team