April 7 marks the International Day of Reflection on the 1994 Genocide against the Tutsi in Rwanda.
Trigger warning: This story contains references to crimes against humanity which some readers may find disturbing.
When the genocide against the Tutsi people enveloped Rwanda and claimed nearly one million lives, survivors say they felt the world look away.
Western nursing professor Glorieuse Uwizeye survived the 100 days of terror as a teenager by hiding with her immediate family in their home. She said Rwandans felt abandoned by the international community during, and after, the genocide.
Now studying the health effects of genocide on those who experienced it but weren’t yet born – at the time, they were babies in utero – Uwizeye said she’s comforted by the partnership of Western and other institutions bolstering her research.
“There was a relief and motivation for me, in the increasing attention we as Rwandans have received, including from these institutions supporting my work,” Uwizeye said. “We felt we had been abandoned by the world. If people had paid attention in 1994, the genocide against the Tutsi could have been prevented.”
Those traumatic effects linger, not just for months or years, but for generations.
The individuals she studies – no longer kids, they’re turning 28 and 29 this year – had prenatal exposure to genocide. Some were born from genocidal rape. The health results show higher rates of many mental and physical conditions, including depression, anxiety and post-traumatic stress disorder among them.
Her study participants report high levels of adverse childhood experiences, such as physical or emotional abuse, bullying, poverty or living with a parent with mental illness. Those difficult early experiences are higher among those conceived by genocidal rape, and they exacerbate the prenatal effects on adult health, Uwizeye said.
“What we learn from Rwanda, we can apply to other countries. We need education that can go across generations to emphasize prevention,” she said.
“We continue to say never again but continue to see wars and genocide around the world. In places where it is already going on, intervention as early as possible is urgently needed, and would mitigate the effects of human violence on various aspects of health and well-being.” -Glorieuse Uwizeye, nursing professor
Laying that groundwork is especially important because the same health consequences can be felt as a result of deeply embedded structural violence, like racism, Uwizeye said.
Researchers believe those life-altering experiences can actually change gene function, Uwizeye explained.
She studies children conceived during the genocide, some by rape, compared to a control group of Rwandans who were outside the country in 1994 but later returned.
Given the long-lasting effects, Uwizeye also hopes to study any offspring of the now-adult children or survivors in her existing research, to examine intergenerational transmission of genocidal trauma.
Her work can be complicated – she uses a trauma- and violence-informed approach to avoid causing further harm to survivors and their families – as well as painful, with most conversations needing a sensitive touch. That goes for Uwizeye, herself a genocide survivor changed by the experience, and for those at the centre of her research.
But it stems from a deep sense of purpose, an effort to use her gifts to benefit others who endured the same violence and tragedy.
“When the genocide happened, I was blessed to survive with my family,” she said. “I feel like it’s a moral responsibility for me to contribute to improve the lives of other survivors.”
Already studying nursing at the high school level in 1994, Uwizeye said the devastation pushed her to train specifically as a mental health nurse due to the extent of the damage and demand for psychiatric care.
In 2010, she met mothers who were raped and forced to carry, birth and parent those children. Uwizeye began writing their stories to help advocate for treatment and further support. The mothers told her they felt they were being punished, forgotten yet again, now bearing the pain and reminders of the sexual assault and brutality with little support.
Uwizeye’s desire to do more for those women led to her to the U.S. to do a PhD at the University of Illinois Chicago. It was a major life and career change.
“When the genocide happened, you knew you were supposed to die. When you survive, it’s kind of like you’ve been given extra time. There is a purpose to staying behind. Anything that happened to others could have happened to me. I could have been killed, I could have lost a leg, I could have been traumatized.”
Uwizeye’s path wasn’t easy either.
She recalled facing discrimination growing up in Rwanda, a country she said has undergone “remarkable change” rebuilding from the genocide, and is now considered one of the safest in the world.
Making the transition to America as a Black woman introduced new risks and injustices.
The fulfillment she gains from her work keeps her going. Still, almost three decades on from the brutality that prompted her research, she fears not enough has changed.
“Minority groups in different parts of the world still live with fear, and living with that ongoing stress is putting our health at risk. We have a long way to go,” she said.
“There are places where genocide and war are impending. It is on our society to prevent that kind of violence.”