One Girl’s Story of Living with HIV

Danielle Toppin

In a series of diary entries for the Jamaica Gleaner, a young woman living with HIV relates the often neglected psychological effects of HIV infection and young motherhood.

When she was seventeen years old,
Gabrielle’s* life took two drastic turns: she became pregnant, and
subsequently, during a routine blood test, discovered that she was HIV-positive. 
In a series of news features being published by the Jamaica Gleaner,
we are able to track some of Gabrielle’s experiences over the past
two years: from losing the father of her child to the disease; to giving
birth to a healthy son; and subsequently meeting her current boyfriend
(also HIV-positive), and becoming pregnant again. 

The series of articles,
The Reality of HIV/AIDS – Diary of an HIV-Positive, Pregnant
Girl”
gives us a glimpse into a largely hidden world, highlighting
some of the challenges faced by pregnant teenagers, in particular those
that are also HIV-positive.  Now five months pregnant, Gabrielle’s
stories underline issues such as discrimination and inadequate health
care, pointing to how they have shaped her experiences of pregnancy. 

One of the issues highlighted
is the sexual vulnerability of many HIV-infected persons who, displaced
from their homes, may end up in housing arrangements that put them at
particular risk. Gabrielle, who at the time was living with a relative
of her late boyfriend, had to endure the (sometimes violent) advances
of a man who felt entitled to sleep with her by virtue of the fact that
he was providing her with a place to stay.

Discrimination against
those living with HIV/AIDS often takes the form of them being ejected
from their households upon discovery of the disease, and subsequently
having to live in unsafe domestic situations.  Factors such as
inadequate job skills;,insufficient education and subsequently, limited
job opportunities disproportionately affect women in poorer socio-economic
settings.  For those with limited income earning abilities, homelessness
is not an easily solved challenge.  Many people, and women in particular,
are forced to endure living arrangements in which they may be subjected
to unwanted sexual advances, and further, sexual abuse such as rape.

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The teenager’s story
highlights another impact of discrimination against those living with
HIV/AIDS: inadequate service from health care providers.  Many
teenagers who become pregnant relate the negative ways in which they
are treated by health care providers, who judge them for having sex
at their young age, and further for becoming pregnant.  In the
case of a
pregnant teenager who is also HIV-positive
,
there is a potential double burden, increasing the likelihood that they
will receive inadequate service, as a result of the ways in which they
are perceived.

Gabrielle’s recollection
of interacting with a nurse who persistently scolds her for becoming pregnant
knowing she is HIV-positive, is coloued by the obvious discomfort felt
by the teenager, a discomfort which has made her fearful and reluctant
to go to the health care centre.   Noting that the nurse makes
her “feel like she is standing on a stool looking down at (her) and
judging (her)”, Gabrielle brings to the forefront the ways in which
health care services for those living with HIV/AIDS is often compromised
when intersected with value systems that negatively judge infected persons
and their presumed lifestyle.

Poignantly, Gabrielle
also highlights the fear
that she feels for her child
,
noting that there is a deep concern amongst HIV-infected mothers-to-be
that their children will contract the disease.  In her emotional
tale, the often-ignored nuanced emotional needs of young women such
as Gabrielle are brought to the fore, underlining another key shortfall
in many of the health care policies on HIV/AIDS – the psychological
impact of the disease, particularly in the case, the needs of HIV-positive,
pregnant women.  Beyond the concerns for self that will typically
confront infected persons, there is the further sense of responsibility
for the health of one’s unborn child.

The experiences of this
young woman have touched
the hearts of many
who may
not have otherwise heard her story.  While the articles do highlight
many of the daily challenges faced by the young woman, my one concern
is that it also adopts a common approach to reporting on HIV/AIDS: the
heavy focus on the tragedy of the situation.  This technique plays
heavily on the emotional side of the story, and while it is useful in
promoting the humanity of those living the disease, it tends to cast
them in somewhat of a victim role.  An integrated approach to reporting
in contrast, highlights not only the challenges faced, but also the
way forward as people find new ways to manage their disease and their
lives — that there is hope for redemption.

That said, the groundbreaking
series of articles does take a step towards clearing the air to allow
for deeper and more progressive interactions on the issue of HIV/AIDS
and the numerous and specific ways in which it affects the lives of
those who live with it.

*Names have been changed.

Commentary Violence

This is Not The Story I Wanted—But It’s My Story of Rape

Dani Kelley

Writer Dani Kelley thought she had shed the patriarchal and self-denying lessons of her conservative religious childhood. But those teachings blocked her from initially admitting that an encounter with a man she met online was not a "date" that proved her sexual liberation, but an extended sexual assault.

Content note: This article contains graphic descriptions of sexual violence.

The night I first truly realized something was wrong was supposed to be a good night.

A visiting friend and I were in pajamas, eating breakfast food at 10 p.m., wrapped in blankets while swapping stories of recent struggles and laughs.

There I was, animatedly telling her about my recently acquired (and discarded) “fuck buddy,” when suddenly the story caught in my throat.

When I finally managed to choke out the words, they weren’t what I expected to say. “He—he held me down—until, until I couldn’t—breathe.”

Hearing myself say it out loud was a gut-punch. I was sobbing, gasping for breath, arms wrapped as if to hold myself together, spiraling into a terrifying realization.

This isn’t the story I wanted.

Unlearning My Training

I grew up in the Plymouth Brethren movement, a small fundamentalist Christian denomination that justifies strict gender roles through a literal approach to the Bible. So, according to 1 Corinthians 11:7, men are considered “the image and glory of God,” while women are merely “the glory of man.” As a result, women are expected to wear head coverings during any church service, among other restrictions that can be best summed up by the apostle Paul in 1 Timothy 2:11-12: Women are never allowed to have authority over men.

If you’ve spent any number of years in conservative Christianity like I did, you’re likely familiar with the fundamentalist tendency to demonize that which is morally neutral or positive (like premarital sex or civil rights) while sugar-coating negative experiences. The sugar-coating can be twofold: Biblical principles are often used to shame or gaslight abuse victims (like those being shunned or controlled or beaten by their husbands) while platitudes are often employed to help members cope with “the sufferings of this present time,” assuring them that these tragedies are “not worthy to be compared with the glory that is to be revealed to us.”

In many ways, it’s easy to unlearn the demonization of humanity as you gain actual real-world experience refuting such flimsy claims. But the shame? That can be more difficult to shake.

The heart of those teachings isn’t only present in this admittedly small sect of Christianity. Rather, right-wing Western Christianity as a whole has a consent problem. It explicitly teaches its adherents they don’t belong to themselves at all. They belong to God (and if they’re not men, they belong to their fathers or husbands as well). This instilled lack of agency effectively erases bodily autonomy while preventing the development of healthy emotional and physical boundaries.

On top of that, the biblical literalism frequently required by conservative Christianity in the United States promotes a terrifying interpretation of Scripture, such as Jeremiah 17:9. The King James Version gives the verse a stern voice, telling us that “the heart is deceitful above all things and desperately wicked.” If we believe this, we must accept that we’re untrustworthy witnesses to our own lives. Yet somehow, we’re expected to rely on the authority of those the Bible deems worthy. People like all Christians, older people, and men.

Though I’ve abandoned Christianity and embraced feminist secular humanism, the culture in which I grew up and my short time at conservative Bob Jones University still affect how I view myself and act in social situations. The lessons of my formative years created a perfect storm of terrible indoctrination: gender roles that promoted repressed individuality for women while encouraging toxic masculinity, explicit teaching that led to constant second-guessing my ability to accurately understand my own life, and a biblical impetus to “rejoice in my suffering.”

Decades of training taught me I’m not allowed to set boundaries.

But Some Habits Die Hard

Here’s the thing. At almost 30, I’d never dated anyone other than my ex-husband. So I thought it was about time to change that.

When I found this man’s online profile, I was pleasantly surprised. It was full of the kind of geekery I’m into, even down to the specific affinity for eclectic music. I wrote to him, making sure my message and tone were casual. He responded instantly, full of charisma and charm. Within hours, we’d made plans to meet.

He was just as friendly and attentive in person. After wandering around town, window-shopping, and getting to know one another, he suggested we go to his favorite bar. As he drank (while I sipped water), he kept paying me compliments, slowly breaking the touch barrier. And honestly, I was enthralled—no one had paid attention to me like this in years.

When he suggested moving out to the car where we could be a little more intimate, I agreed. The rush of feeling desired was intoxicating. He seemed so focused on consent—asking permission before doing anything. Plus, he was quite straightforward about what he wanted, which I found exciting.

So…I brought him home.

This new and exciting “arrangement” lasted one week, during which we had very satisfying, attachment-free sex several times and after which we parted ways as friends.

That’s the story I told people. That’s the story I thought I believed. I’d been freed from the rigid expectations and restraints of my youth’s purity culture.

Now. You’re about to hear me say many things I know to be wrong. Many feminists or victim advocates almost certainly know the rationalizations and reactions I’m about to describe are both normal responses to abuse and a result of ingrained lies about sex in our culture. Not to mention evidence of the influence that right-wing conservatism can have on shaping self-actualization.

As I was telling people the story above, I left out important details. Were my omissions deliberate? An instinctive self-preservation mechanism? A carryover from draconian ideals about promiscuity?

When I broke down crying with my friend, I finally realized I’d kept quiet because I couldn’t bear to hear myself say what happened.

I’m a feminist, damn it. I left all the puritanical understandings of gender roles behind when I exited Christianity! I even write about social justice and victim advocacy. I ought to recognize rape culture!

Right?

If only being a socially aware feminist was enough to erase decades of socialization as a woman within rape culture—or provide inoculation against sexual violence.

That first night, once we got to my car, he stopped checking in with me. I dismissed the red flag as soon as I noticed it, telling myself he’d stop if I showed discomfort. Then he smacked my ass—hard. I pulled away, staring at him in shocked revulsion. “Sorry,” he replied, smirking.

He suggested that we go back to my house, saying we’d have more privacy than at his place. I was uneasy, unconvinced. But he began passionately kissing, groping, petting, and pleading. Against my better judgment, I relented.

Yet, in the seclusion of my home, there was no more asking. There was only telling.

Before I knew it, I’d been thrown on my back as he pulled off my clothes. I froze. The only coherent thought I could manage was a weak stammer, asking if he had a condom. He seemed agitated. “Are you on birth control?” That’s not the point! I thought, mechanically answering “yes.”

With a triumphant grin and no further discussion, he forced himself into me. Pleasure fought with growing panic as something within me screamed for things to slow down, to just stop. The sensation was familiar: identical to how I felt when raped as a child.

I frantically pushed him off and rolled away, hyperventilating. I muttered repeatedly, “I need a minute. Just give me a minute. I need a minute.”

“We’re not finished yet!” he snapped angrily. As he reached for me again, I screeched hysterically, “I’M NOT OK! I NEED A MINUTE!”

Suddenly, he was kind and caring. Instead of being alarmed, I was strangely grateful. So once I calmed down, I fucked him. More than once.

It was—I told myself—consensual. After all, he comforted me during a flashback. Didn’t I owe him that much?

Yet, if I didn’t do what he wanted, he’d forcefully smack my ass. If I didn’t seem happy enough, he’d insistently tell me to smile as he hit me again, harder. He seemed to relish the strained smile I would force on command.

I kept telling myself I was okay. Happy, even. Look at how liberated I was!

All week, I was either at his beck and call or fighting suicidal urges. Never having liked alcohol before, I started drinking heavily. I did all I could to minimize or ignore the abuse. Even with his last visit—as I fought to breathe while he forcefully held my head down during oral sex, effectively choking me—I initially told myself desperately that surely he wouldn’t do any of this on purpose.

The Stories We Tell and The Stories That Just Are

Reflecting on that week, I’m engulfed in shame. I’m a proud feminist. I know what coercion looks like. I know what rape looks like. I know it’s rarely a scary man wearing a ski mask in a back alley. I’ve heard all the victim-blaming rape apologia you have: that women make up rape when they regret consenting to sex, or going on a date means sex is in the cards, or bringing someone home means you’re game for anything.

Reality is, all of us have been socialized within a patriarchal system that clouds our experiences and ability to classify them. We’re told to tend and befriend the men who threaten us. De-escalation at any cost is the go-to response of almost any woman I’ve ever talked to about unwanted male attention. Whatever will satiate the beast and keep us safe.

On top of that, my conservative background whispered accusations of being a Jezebel, failing to safeguard my purity, and getting exactly what I deserve for forsaking the faith.

It’s all lies, of course. Our culture lies when it says that there are blurred lines when it comes to consent. It violates our personhood when it requires us to change the narrative of the violence enacted against us for their own comfort. Right-wing Christianity lies when it says we don’t belong to ourselves and must submit to the authority of a religion or a gender.

Nobody’s assaulted because they weren’t nice enough or because they “failed” to de-escalate. There’s nothing we can do to provoke such violence. Rape is never deserved. The responsibility for sexual assault lies entirely with those who attack us.

So why was the story I told during and after that ordeal so radically and fundamentally different from what actually happened? And why the hell did I think any of what happened was OK?

Rape myths are so ingrained in our cultural understanding of relationships that it was easier for me to believe nothing bad had happened than to accept the truth. I thought if I could only tell the story I wanted it to be, then maybe that’s what really happened. I thought if I was willing—if I kept having him over, if I did what he ordered, if I told my friends how wonderful it was—it would mean everything was fine. It would mean I wasn’t suffering from post-traumatic stress or anxiety about defying the conservative tenets of my former political and religious system.

Sometimes, we tell ourselves the stories we want to hear until we’re able to bear the stories of what actually happened.

We all have a right to say who has what kind of access to our bodies. A man’s masculinity gives him no authority over anyone’s sexual agency. A lack of a “no” doesn’t mean a “yes.” Coercion isn’t consent. Sexual acts performed without consent are assault. We have a right to tell our stories—our real stories.

So, while this isn’t the story I wanted, it’s the story that is.

I was raped.

Commentary Sexual Health

‘Not the Enemy, But the Answer’: Elevating the Voices of Black Women Living With HIV

Dazon Dixon Diallo

National HIV Testing Day is June 27. But for longtime advocates, ensuring that the women most affected by the epidemic can get and influence care and policy is the work of many years.

I met Juanita Williams in the mid-1980s. She was the first client at SisterLove, the then-new Atlanta nonprofit I founded for women living with AIDS.

June 27 is National HIV Testing Day, and many women will be tested during the observance. But when I met Williams, HIV was a growing reality in our communities, and women were not even recognized as a population at risk for HIV at that time.

This lack of understanding was reflected in women’s experiences when seeking care. Williams’ attempt to get a tubal ligation had been met with fear, ignorance, and hostility from a medical team who informed her she had AIDS. Not only did they refuse to provide her the medical procedure, the hospital staff promptly ushered her down the back staircase and out the door. Williams was left without information or counseling for what was devastating news.

A Black woman who grew up in Syracuse, New York, she had moved to her family’s home state of South Carolina. Her first major decision after her diagnosis was to leave South Carolina and move to Atlanta, where she believed she would get better treatment and support. She was right, and still, it wasn’t easy—not then and not now. Even today, Williams says, “Positive people are not taken seriously, and positive women are taken even less seriously. People think positive people are way down on the totem pole.”

As communities across the United States observe National HIV Testing Day and emphasize taking control of our health and lives, women’s voices are an essential but still neglected part of the conversation. The experiences of Black women living with HIV, within the broader context of their sexual and reproductive health, highlight the need to address systemic health disparities and the promise of a powerful movement at the intersection of sexual and reproductive justice.

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The urgency of adopting an intersectional approach to sexual and reproductive health comes to light when considering the disproportionate impact of HIV on women of color. Black women account for 69 percent of all HIV diagnoses among women in the South. Advocates also acknowledge the history of biomedical and reproductive oppression that Black women have suffered throughout American history, including forced pregnancy and childrearing during slavery to forced sterilization afterward. Keeping these matters in mind helps us understand how the HIV epidemic is a matter of sexual and reproductive justice.

Taking seriously the perspectives of women such as Williams would amplify our collective efforts to eradicate HIV’s impacts while elevating women’s health, dignity, and agency. This is especially pressing for women living with HIV who experience the greatest disparities and access barriers to the broad spectrum of reproductive health, including contraception and abortion.

The policy context has created additional barriers to advancing the reproductive health of women living with HIV. For example, the 2015 National HIV AIDS Strategy Update neglected to mention family planning or reproductive health services as arenas for providing HIV prevention care. Yet, in many instances, a reproductive health clinic is a woman’s primary or only point of access to health care in a given year. Providing HIV prevention and care in family planning clinics is a way to provide a space where women can expect to receive guidance about their risk of exposure to HIV.

As advocates for women living with HIV, we at SisterLove are committed to ensuring that human rights values are at the center of social change efforts to protect and advance the sexual and reproductive health and rights of women and their families. We work to transform the policy frame to one that asserts women’s agency to make decisions that are best for themselves and their loved ones. We draw strength from the resilience and determination of the women we serve.

Several years after becoming deeply involved with SisterLove, Williams became an advocate for her own reproductive health and began speaking out on behalf of other Black women living with HIV. She eventually became a trainer, counselor, and health outreach worker.

Later, in 2004, Williams was the only woman living with HIV invited to be a main speaker at the historic March for Women’s Lives in Washington, D.C. She is a mother, grandmother, and great-grandmother who has returned to South Carolina, where she teaches other women living with HIV about sexual and reproductive justice and human rights. Williams uses her own story and strength to help other women find theirs.

“Give [women living with HIV] a voice and a platform for that voice,” she has said. “Give a safe place to let their voices be heard and validate them …. We need positive women’s voices to continue to fight the stigma. How do we do that? We tell our stories and reflect each other. I am not the enemy, I am the answer.”

Advocates need strength as we work at many critical intersections where the lives of women and girls are shaped. We cannot address HIV and AIDS without access to contraception and abortion care; health and pay equity; recognition of domestic and gender-based violence; and the end of HIV criminalization. And as advocates for sexual and reproductive health in our communities, SisterLove is working alongside our sisters to support National HIV Testing Day and ensure all people have the information, tools, and agency to take control of their health.

Elevating the health and dignity of people living with HIV calls for special attention to the epidemic’s implications for women of color and Black women, particularly those within marginalized communities and in the Deep South. The voices and leadership of the most affected women and people living with HIV are essential to making our efforts more relevant and powerful. Together, we can advance the long-term vision for sexual and reproductive justice while working to eradicate HIV for all people.