I was born with HIV. When I was teenager, I had many questions about HIV and how I got it. My doctor thought I would feel better to learn that I got HIV from my mother, whom I lost when I was five years old. It didn't register in my mind as I replied: "My mother? My mom died many years ago, and I don't even remember her ... how could she give me HIV when I didn't live with her that long? It could be possible that I got HIV from my father."
Learning that my mother gave me HIV made me sad, not because I was mad at her, but because I felt sorry for her. I couldn't imagine how the whole world was shaming her. As I grew up, I imagined her pain, her shame, her love for me, her despair while dying of AIDS-related complications. I felt it was unjust that only my mother was accused of giving me HIV, when I had two parents.
In my teenage years, I started questioning my body. I had menstrual periods. I had crushes on boys. In other words, I had hormones like everybody else. Then, the policy in Rwanda (where I was born) was to discourage people living with HIV from having sex in an effort to stop the spread of HIV. Out of fear that I might have sex, my doctor told me, "Claire, the minute you have sex, you will die." He added, "Sex leads to babies, and babies from women living with HIV are born with HIV." I was terrified.
According to UNAIDS, there have been documented cases of involuntary and coerced sterilization and forced abortion among women living with HIV in at least 14 countries worldwide. At the same time, young women and girls like me were threatened with the prospect of death to discourage us from having sex. At that time, it was considered "ungrateful and selfish" to desire to have sex, possibly spread HIV, and produce a baby with HIV. Women living with HIV around the world lived with trauma, awaiting the day we would die. I always thought about my mother, who died young; I imagined her pain, and I vowed that I would not bring a baby with HIV into this world. I felt filthy and undesirable because I had HIV.
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Twenty years later, things have changed dramatically; women, and people living with HIV in general, are living longer. We no longer aspire only to live longer; we aspire to live longer and better. Part of living better is being able to enjoy our right to sexual and reproductive health.
Many women living with HIV who survived that "prohibition " time didn't have children of their own. Some were sterilized. Others were terrified and traumatized. While we create space for women living with HIV, these female long-term survivors need to be recognized for their resilience.
Today, I have a story to tell: Once a young woman terrified to have sex, I am now a biological mother to a beautiful baby boy free from HIV. I found love, and I enjoy having sex, thanks to the advancement of science and antiretroviral treatment.
Science, Numbers Don't Lie U=U (Undetectable = Untransmittable )
Undetectable equals untransmittable, or U=U, means that, once the level of HIV in someone's blood is undetectable as a result of HIV treatment, that person can not transmit HIV to his/her sexual partner. Now, women living with HIV are having sex more than ever and are becoming mothers.
The Struggle Continues
The struggle continues, however. Until recently, we have had limited research on the safety of breastfeeding for women living with HIV who are on treatment, and how that impacts their infants. In developing countries, women living with HIV are encouraged to breastfeed, mainly because they can't afford baby formula and the risk of their babies dying from consuming unclean water outweighs the risk of HIV transmission. In developed countries, women are strictly told not to breastfeed. If you are a woman looking for answers, the information can be confusing and contradictory. Many women HIV activists are older women, Baby Boomers and Gen-Xers who have moved on from the idea of having children. The Millennial or "Dot.com" generation, like me, is often forgotten and misrepresented, yet we are the ones now actively making babies.
Recently, I attended a women's summit; a woman with a baby like me had to pay four times the price paid by women with no children. (Big thanks to my supportive male partner, who not only supported me financially but also accompanied me to the summit.)
In additional to that exorbitant attendance price, I was shocked discover that my baby was not welcome in conferences areas, yet "emotional support" dogs were allowed in these spaces. We need spaces where mothers with small children can support one another and become advocates -- and where we can bring our children and families. It's women time: the #metoo movement, Black Lives Matter, electoral campaigns, and other important social activism movements are on the rise. But practical problems that women with HIV face are often seen as outweighed by issues that appear out of reach to women with day-to-day concerns.
In most activist spaces, when I ask about breastfeeding for women living with HIV, the response is that there is not enough money for research. But who is going to bring this issue to the table when women with children are asked to pay four times just to access these gatherings? How many women like me can afford to attend such gatherings? We have so many social issues on the table: politics, anti-racism, immigration, voting, reproductive rights, electoral campaigns, feminism, just to name a few. Among all these important social issues, motherhood for women living with HIV is toward the bottom on the list of priorities.
For that reason, when women living with HIV come together, I expect to meet women like me regardless of their political affiliations, their races, their immigration status, their political views. After all, we are all women. As one of my teachers used to say, "If everything is important, nothing is really important."
As women living with HIV, we need to stick to our core issues, work with social justice organizations on other important issues, and outsource activities that are pertinent to both women and the general population. We also should recognize the men who support us and engage them as allies in the movement. We can't do it all! We are not super-women; we are just women.
The Way Forward
Motherhood is an undeniable right, regardless of many laws and regulations put into place throughout the history of the AIDS epidemic to discourage women living with HIV from reproducing.
Reflecting on the pain and shame that women like my mother endured in the early days of the epidemic, the motherhood struggle for women living with HIV continues. We need more young women living with HIV in biomedical research, on HIV planning councils, and in activist groups. Women who are long-term survivors need and deserve their own space to heal from their trauma from "prohibition" time. Governments who sterilized women living with HIV have to be held accountable, and younger women living with HIV and desiring to have children need a stronger support system. As women activists, we need to envision succession and sustainability plans to increase our efforts to engage upcoming generations.
Motherhood throughout the AIDS epidemic has been tough. But the struggle continues, and there is hope, as many of us are becoming mothers for the first, second, third, and forth time while living healthy with HIV.
To all women living with HIV: Happy Mother's Day.
Tuyishime Claire Gasamagera is a motivational public speaker, life skills coach and visionary operations executive; fluent in over seven languages including English, French and Kinyarwanda; anti-AIDS activist, freelance writer, lobbyist, and consultant with solid experience managing all levels of projects including fundraising, advocacy, budgeting, and administration on the national, regional, and global level.