|Credit: Stephanie Gross Photography|
Bose Oladayo learned she was HIV positive more than a decade ago. Back then, Oladayo didn’t know much about the disease, but the stories she heard painted a grim picture of her future.
Oladayo wanted to “cure” herself of HIV. So, the mother of three made a mixture of deadly chemicals, among them bleach, and injected it into her body, thinking it would kill the disease, Oladayo told TheBody.com via email.
“This happened so [many] years back when I had no access to information, and there was no one to share my story and experience with,” she said.
Eventually, Oladayo found help. She started treatment and maintained good health. Then, in 2011 her life changed exponentially. In the fall of that year, an activist friend contacted Oladayo, who lives in Abuja, Nigeria, about meeting with The Well Project, a nonprofit HIV/AIDS advocacy organization focused on women and girls. The Well Project wanted Oladayo come to New York for a two-day Global Women’s Task Force meeting. The Nigerian-born mother joined women from around the world to discuss, among other issues, how women from different regions access information about HIV.
Before that session, Oladayo had only shared her story about living with HIV on local and national media in Nigeria and led multiple support groups for people living with HIV. But, her time in New York opened her eyes and expanded her reach, she said; from that point she became an active contributor to The Well Project’s A Girl Like Me program, through which she’s been able to connect with people living with HIV around the globe.
“After that meeting, I came home a changed woman,” said Oladayo, who serves as a Well Project global ambassador and community advisory board member. “I was greatly impacted by that experience.”
Oladayo’s experience with The Well Project seems to be rule, not the exception. The nonprofit group, founded in 2002, has helped hundreds of thousands of women living with HIV lead healthier, more self-assured lives because of the advocacy and support its offers.
That’s according to a report The Well Project released, quantifying its reach and impact among people living with HIV around the world. The Well Project’s Your Voice Counts 2016 User Survey found that the majority of women who have used its online resources and programs have consequently been more likely to engage in health care and self-care. A large portion of the survey’s 229 respondents also reported having gained a better outlook on living with HIV. (Survey participants included women, men, transgender women and transgender men, though nearly 88% identified as women.)
None of The Well Project team members interviewed for this piece were surprised by the report’s positive results. Instead, they told TheBody.com that the Your Voice Counts survey confirms what they’ve known all along: The Well Project is an invaluable network for women and transgender women navigating what it means to have HIV.
“It shows how helpful it is to all of us,” said Maria Mejia, a global ambassador, community advisory board member, and A Girl Like Me blogger for The Well Project. The people who use its services “feel empowered,” Mejia told TheBody.com. “They’ve become great advocates and activists in their own countries and in their own communities.”
The 2016 Your Voice Counts user survey identified four key areas where The Well Project has had the deepest impact: knowledge, health care and treatment, self-care and outlook. According to the report, 70% of women living with HIV, including transgender women, said they felt more knowledgeable about the disease because they used The Well Project’s resources to address their own health and social needs. More than 74% of participants also reported being more likely to talk with their doctor about HIV treatment, while nearly 71% said they would now “accept only respectable, caring behavior from partners, family and/or friends” because they’ve engaged with the non-profit’s services.
A Spectrum of Strength, A World of Stigma
The Well Project’s influence on people’s life outlook has been particularly significant. The survey found that more than 75% of women living with HIV felt more hopeful about the future, while nearly 82% reported feeling connected to a community. Additionally, over 82% of participants had became better self-advocates and nearly 81% had become better advocates for others living with HIV, according to the report. Many of the participants said they used The Well Project’s resources to provide information and support as an advocate or peer educator, as well as to educate others about HIV.
These survey results reflect “a spectrum” of strength among women living with HIV who take the information they’ve learned and use it “to advocate on their own behalf and to engage others as well,” said Judy Auerbach, a science and policy consultant and University of California San Francisco professor who serves on The Well Project’s board of directors.
“The survey really highlighted that that spectrum occurs for a lot of women — that unfolding of engagement and involvement with the kind of impact that it has on their health and well-being,” Auerbach told TheBody.com.
People living with HIV face stigma and shame from their family, friends, doctors and strangers on the street. The Well Project’s Your Voice Counts user survey reveals the extent to which women and transgender women living with HIV are confronted with discrimination — and how it affects their mental and physical health.
According to the report, more than 62% of participants have experienced some form of stigma or discrimination in their personal lives because of their HIV status. Many respondents reported being cut off by loved ones, while others said they were denied jobs or housing. Some women living with HIV also revealed being at the center of widespread community gossip or publicly rejected by religious communities.
“A lot of us, because of the virus and the stigma, have a lot of shame,” said Mejia.
Discrimination against people living with HIV is also rampant in health care. The survey found that nearly 50% of women living with HIV had experienced stigma or discrimination from a physician, nurse, dentist, social worker or reproductive health specialist, among other health care staff. Many of the women said they had been denied routine services, told inaccurate medical information and been subjected to disparaging comments and stereotypes about their behavior and personal histories.
This type of inadequate and discriminatory care has prevented many respondents with a history of trauma from accessing and engaging in mental health care, according to the survey.
“It’s so frustrating,” said Tiommi Jenae Luckett, communications coordinator for The Well Project and a member of Positively Trans (T+) at the Transgender Law Center. There are still doctors, she said, who will spread misinformation about viral load suppression and pregnancy. “I have heard some of the things that providers have said to women [living with HIV], such as, ‘Don’t ever try to get pregnant; you’ve missed your chance to have kids.'”
A Safe Space for Transgender Women
Luckett, who also blogs for A Girl Like Me, has been instrumental in making The Well Project a safe space for transgender women living with HIV. Transgender women, particularly transgender women of color such as Luckett, face significantly higher rates of hate violence and homicide. They also experience higher rates of HIV infection and are far less likely to receive proper medical care.
The Well Project, Luckett said, gives transgender women a place to share these experiences and build a community so they don’t feel alone in an increasingly dangerous world.
“When other trans women come to the site, they are able to visually to see that The Well Project is inclusive of all women,” Luckett told TheBody.com. “It gives us the opportunity as trans women to actually have a network of like-minded people.”
Luckett, Mejia and Oladayo all say that The Well Project has given them opportunities to expand their careers and become advocates for their communities. The nonprofit’s global reach helps them bridge the digital divide to educate and empower women and girls about living with HIV. And, in turn, the three women receive endless support and encouragement, so they can become stronger advocates for themselves and others.
“Giving hope and putting smiles on the faces of families infected and affected by HIV/AIDS in my community gives me great joy,” Oladayo said.
Author: Annamarya Scaccia