It’s a sunny Thursday morning in Maceió, in eastern Brazil.
Ruty Pereira has plenty of chores to keep her busy at home. But there she is, sitting in the front row of a meeting at her local community center. Paintings of balloons and clouds decorate the walls.
Pereira’s daughter, 10-year-old Tamara, is sitting on her lap. The girl’s mouth is slightly open. Her arms are bent, locked at the elbows.
There are other mothers there, sitting next to their children, who are about the same age and show similar symptoms. Many of them are in wheelchairs.
At one point during the meeting, Pereira speaks up. She wants to know if everyone is entitled to the financial assistance being discussed.
The group looks to the speaker, Alessandra Hora dos Santos, who has been their matriarch and advocate for years. They listen to her answers, hoping to hear that all their hard work has finally paid off.
Over the past decade, the women in this room have gone from feeling voiceless and powerless to becoming outspoken activists, banding together to do something they never imagined. They are demanding that the Brazilian government compensate them for what they see as a failure to protect them from a notorious disease.
They want reparation, they say. They want compensation for their children.
A Worrying Diagnosis
For Pereira, it all started in 2015, when she was just over 20 and pregnant. “I had all the prenatal exams and everything was fine,” she says through an interpreter.
But then, when Tamara was born, something was wrong. Her head was too small.
The neurologist approached her and asked: “Mom, have you had Zika?”
The doctor was referring to a mosquito-borne virus that hijacks a protein essential for normal brain development. Like many children born to mothers infected with Zika during pregnancy, Tamara had microcephaly—a underdeveloped brain. The doctor told Pereira it was unlikely her daughter would ever walk or talk.
“It often affects not just the head, but also the arms and legs,” says Mardjane Lemos, an infectious disease specialist at the State University of Health Sciences of Alagoas, through an interpreter. “It affects hearing and vision.”
When Pereira received the news, “my world collapsed,” she recalls. “When you plan to have a child, it’s not just the child—it’s a whole life, a future, college, a home, everything.”
Pereira called her husband in tears, desperate. He comforted her, saying: “Calm down, because God is the best doctor.”
Medical appointments began immediately. Pereira took Tamara to weekly visits that required an exhausting overnight bus ride from her rural home to the city hospital. Later, Pereira would rush her daughter to the emergency room when things suddenly spiraled out of control—like when the balloon that helped secure Tamara’s feeding tube in her stomach burst or when she vomited to the point of dehydration.
As Iana Flor, whose son Pedro was also affected by Zika, put it: “It’s complicated because one day can be good and the next it’s like a bomb going off.”
Still, despite the hardships and living on limited resources, Pereira was determined. “When you have a special child, you devote yourself entirely to them,” she says.
Her husband worked as a construction contractor, covering grocery bills and other household expenses. But Tamara was entirely Pereira’s responsibility. “He expected me to take care of all of Tamara’s needs—all the doctors, all the therapies, all the specialists,” she says.
Pereira acknowledges there wasn’t much left for her husband and all his expectations that she cook, clean, and care for their daughter.
“I felt suffocated,” she says. “A woman, when she’s in a relationship, kind of lives for the other person. She stops having her own life.”
So, after 12 years of marriage, Pereira told her husband it was over. She and Tamara moved to a rented house in another neighborhood.
“I was alone all the time,” she says. “It was very hard.”
After the ‘End’
The isolation didn’t last long. When Pereira took Tamara for physical therapy, she met other mothers whose lives had also been upended by Zika. They found common ground in the challenges of caring for their children and financial struggles, and they strengthened each other.
In total, about 3,300 “Zika babies” were born in Brazil over a four-year period. The disease disproportionately impacted poorer and rural families “because those areas lack basic sanitation,” says Dr. Lemos. “Many of these women don’t have piped water at home,” which means they often have to collect rainwater in containers that serve as ideal breeding grounds for mosquitoes. “No one is going to throw water away, even if there are larvae in it,” she says.
The consequences for the affected families are long-lasting. “For them, Zika hasn’t ended,” says Luciana Brito, a psychologist, researcher, and co-director of the Anis Institute of Bioethics.
It’s a story that repeats around the world, says Brito—on a large and small scale. A natural disaster or public health crisis hits a community and it becomes the main story. But quickly, people move on to the next tragedy elsewhere. For that original community, though, the challenge is just beginning.
In Brazil and beyond, Brito and her colleagues are exploring this disconnect between the official end of a disaster and the ongoing reality for those at the epicenter of the hardship.
“There is no end for the most affected people,” says Brito, who works with communities long after the rest of the world has moved on. She and her team helped Pereira and the other mothers form a community association to advocate for their needs. It’s called Family of Angels and is led by dos Santos.
Dos Santos cites a Brazilian saying to explain the constant struggle she and the other women—whom she calls “her mothers”—must face. “We have to kill a lion every day,” she says through an interpreter. “You conquer one thing and you already have to think about the next. So every day we’re killing lions here.”
A Fight for a Home
The first lion the group faced was homeownership. “If you have a house, you have quality of life, you have dignity,” says Pereira.
In Brazil, low-income families with children with disabilities have priority for free public housing. But that wasn’t happening for these mothers. They called, but Brito says the authorities never returned their calls.
So, on a hot day in 2020, Pereira joined a few dozen mothers for a protest outside a government housing office. Some carried umbrellas to shield from the sun. All pushed their children in wheelchairs, wearing yellow T-shirts that read: “Microcephaly is not the end.”
“We demand a response!” they shout in a video recorded that day.
“I’ll never forget this special day when we stopped traffic for our children,” says Pereira. “If you don’t fight, if you don’t show up, people think everything is perfect. And nothing is perfect.”
Pereira says the protest was both empowering and humiliating. Some of their children were crying. She remembers people yelling: “Go home, do some laundry.”
But it took just one day for the women to secure a meeting with the relevant authority, who finally helped them get free housing. Now, they were homeowners.
Pereira was able to move into a ground-floor apartment in a housing complex on the outskirts of Maceió. The place is small but cozy. “I love this apartment,” she says. “It’s mine. I didn’t get it from any man. I got it through my own fight.”
One day last summer, Tamara is sitting in her wheelchair in the living room. She has big brown eyes and an expressive face. Tamara doesn’t speak, but she’s engaged. “This girl is very cheerful and likes to be around people,” says Pereira.
Every now and then, Pereira leans in to wipe a strand of saliva from Tamara’s chin.
There’s a soft knock at the door. It’s Lenice do Nascimento, a dear friend of Pereira’s who lives in the building next door. That’s the advantage of living here—Pereira is no longer alone. Her neighbors are the mothers and children she fought alongside to get this housing.
In fact, when Pereira decided to finish high school, it was Lenice do Nascimento who offered to care for Tamara at night so she could complete her studies.
“It was a dream for me to be able to study,” says Lenice do Nascimento through an interpreter, “but with a family, with children, it’s very hard and I couldn’t. So I can do it for her.”
Pereira flips through some of her school notebooks, each filled with careful handwriting. “I never thought I’d go back to school and finish,” she says. “But now that I have, I feel so fulfilled. I learned there’s a whole world ahead of me.”
For now, Pereira earns extra money cleaning houses on weekends, and that’s when another close friend cares for Tamara.
“These women, I call them my third arm,” she says. “We are sisters in resistance.”
The women have become a crucial source of support for Pereira. The result is that she feels more in control of her life—a life that remains centered on her daughter.
“Before her, I was an extremely selfish person. I had this habit of saying: ‘You live your life, I live mine,’” says Pereira. “But now I live for Tamara. My daughter changed my life. She opened my heart, which is now more sensitive to love and forgiveness.”
A Claim for Reparations
A few months ago, the sisters in resistance won a particularly crucial battle.
The women finally reached an important conclusion: none of this had to happen. The government, they say, could have implemented measures to control the mosquito population and taught the community to avoid Zika exposure, preventing all the suffering they endured.
So, they began demanding compensation from the Brazilian government for their children. They saw it as fair recompense for everything they had suffered. They also wanted an apology.
“The Brazilian government failed to provide basic sanitation, health conditions, and basic public policies to ensure the essentials for people,” says dos Santos. “What creates the perfect conditions for the proliferation of infectious diseases.”
“These women were neglected by the government,” says Dr. Lemos. “I have no doubt about that.”
“It’s the recognition that these women matter,” says Brito. “They were forgotten by public authorities. And now, this bill says: ‘You matter to us.’ And the money is just a symbolic way to do that.”
Dos Santos took the case straight to Brazil’s capital, where she wore her favorite outfit. “I was wearing my yellow T-shirt,” she says. “Yellow is the color chosen to represent the Zika virus, black pants, and high-heeled sandals.”
At the end of last year, the compensation bill was approved by the National Congress. It then went to President Luiz Inácio Lula da Silva’s desk, who vetoed it citing budgetary difficulties. Then, this summer, Congress overrode the veto.
After nearly a decade of fighting, the bill became law.
Brazil agreed to pay each child a one-time compensation of about US$ 9,000, plus US$ 18,000 per year for the rest of their lives. The bill refers to this money as compensation for moral damages.
a great victory and an acknowledgment of error at the highest levels of the Brazilian government. Pereira said the money will allow her to buy healthier food and perhaps even a car.
“This will bring more quality of life,” she says.
Flor agrees. “This bill will be a great help to all of us mothers,” she says. And “it will give dignity to these children.”
Some of the mothers were inside the National Congress Palace when the bill passed.
The women hugged, jumped, and celebrated.
Source: npr.org by Ari Daniel