SFU social innovator Allison Carter is a public health researcher and PhD student, studying and promoting positive sexuality for women living with HIV. Follow her on Twitter at @MissAllieCarter. Below, we get a second update from Life and Love With HIV, a project team funded through the SFU Student Social Innovation Fund.
There is a long overdue need for research and support dedicated to the positive aspects of sexuality for women living with HIV.
Desire. Arousal. Orgasm. Pleasure. Satisfaction. Intimacy. Consent.
There are many benefits to sexuality yet far too few resources are available for supporting women living with HIV to thrive in their sexual lives, whether they’re having sex with a partner or not (both are okay and normal!).
After many years of casual conversations with women living with HIV about sex and relationships and recent research documenting their reduced sexual activity and sexual satisfaction in Canada, HIV activists and community-based researchers from Simon Fraser University have teamed up to create an online resource, Life and Love With HIV.
The site will be dedicated to sharing positive and respectful research, support, education, and advocacy that moves beyond an emphasis on safe sex and embraces the possibility of pleasurable, satisfying, and fulfilling sexual experiences and relationships after HIV. We want to engage all the positive women and allies who are already working daily on this cause, and build momentum to advance positive women’s sexual rights around the world.
More information about how this project came to be, including our commitment to working with (rather than on) communities to create social change, can be found in our April 2016 blog post.
If you read this post, you’ll notice we changed our name from “Life and Love After HIV” to “Life and Love With HIV”. You may wonder why we made this change and its significance to our work. We felt that “after HIV” could be misunderstood as limited to the time around diagnosis, whereas “with HIV” is more reflective of the continual process of grief, loss, and starting over that occurs with this disease. We also felt this name was more inclusive to not only positive women (regardless of time living with HIV) but also their partners, negative women who may have a positive partner, providers, and even the general public.
What else has been happening with our project to date? Well, besides our stellar website consultant, Fernando Prado, who is not only a creative genius but equally passionate about social change, none of us have ever built a website! And like everyone who ventures down this road (which is most people in today’s digital age), we want to build a great website!
Not just a site, though. A community. So, that’s where we started: with community.
We hosted a sharing circle with women living with HIV at this year’s Positive Gathering Conference, the only conference that is led by and for people living with HIV in BC. About a dozen women joined us that day and shared many personal stories about their feelings and experiences around living and healing with HIV as well as their challenges and triumphs of dating, relationships, disclosure, love, and sex while living with HIV.
As an HIV-negative women and a researcher at an academic institution, I was and am acutely aware of my status and position. I do not have lived experience of HIV yet hold tremendous power and privilege in the production of knowledge. While never perfect, conducting respectful, ethical, and inclusive research that meaningfully involves affected communities is something I hold close to my heart and what most community-based researchers strive for. It was a sincere privilege and honour to be accepted into this sharing circle and it gave me rare insight into the most intimate aspects of women’s lives.
While there were many vibrant stories shared around sex, whether fun casual flings or lasting love relationships (often with HIV-negative partners), other tales were saddening (and even, maddening!).
Many women expressed having feelings of internalized stigma at some point in their lives. By this I mean they not only felt but also believed the messages perpetually reinforced about them in the media and popular culture – namely, that they are “infected”, “dangerous”, “damaged goods”, and “unlovable” (their words exactly).
The challenges to navigating dating and disclosure within heterosexual communities also figured prominently in women’s stories. Rarely does HIV messaging target straight men, and as a result, many women (but not all) face mistreatment, rejection, or even verbal or physical abuse upon HIV disclosure; these attitudes and resulting actions are driven by misconceptions concerning the kind of people who get HIV and what it’s like to live with the disease. It goes without saying that there are a lot of educated and compassionate individuals that do not react in this way. Still, many potential partners miss out on amazing relationships with strong, empowered, beautiful women simply because they believe the negative messaging about HIV or know very little about the disease today.
(Educational aside: In case you’re reading this and aren’t up on the latest science, consistent use of antiretroviral therapy reduces the level of HIV in the blood to undetectable levels, which in turn lowers the risk of sexual HIV transmission to almost zero. ZERO! This is more effective than the HIV prevention benefits afforded through the use of condoms, which are estimated to reduce the risk of HIV transmission by 80%.)
Women also shared great suggestions for what they’d like to see in a website. At its core, they felt the site should be positive, affirming, respectful, freeing, and tailored to the diversity of women living with HIV. It should let women know:
“It’s okay. HIV is not the end of your sex life. You can live with this. You can have a long, healthy, and full life.”
Creating a space for community to connect was also important, and not just for women living with HIV but also the partners they love (current or prospective), providers who care for them, and other allies. They envisioned a crowd-sourced blog with content contributed from women living with HIV and sex-positive researchers and advocates from around the world as a way to share multiple voices, perspectives, and information to help empower women and couples to make their own decisions about sex and lead fulfilling love lives. They also wanted to see resources on disclosure and the law as well as engaging information to help de-criminalize and de-stigmatize HIV.
In the words of one participant: “Finding the right person is hard, but HIV makes it even harder.” When we came up with the idea for this website, we wanted to normalize sex and intimacy for women living with HIV. It has since become very clear that doing so requires normalizing HIV. Women living with HIV are NOT “infected”, “dangerous”, “damaged goods”, or “unlovable”. And their sex lives (whether fun and active or completely non-existent) are NOT abnormal or dysfunctional. It’s society that sucks. Women living with HIV are, simply put, women – they are deserving of the same sexual rights, privileges, and quality of life as anyone else.
To be notified when the site is launched, please connect with us online at www.lifeandlovewithhiv.ca.