The power of love: Nyirahabimana’s journey with albinism

Nyirahabimana and her two sons, Enock and Honoré, pose for a family photo at their home in Rutsiro. Photo: Alice Kayibanda

Belina Nyirahabimana is a 49-year-old mother of six with albinism whom I met while visiting Kagano village in Rutsiro District early this year. Her warmth and kindness were palpable. As she welcomed me into her home, her face lit up with a radiant smile, instantly putting me at ease. One would never have guessed that she suffered discrimination as a child due to her skin condition.

Life became difficult for her at four years old. Her friends started calling her names like ‘Kizungu’, ‘Igishwaminyo’, and ‘Ikimanuka’. She asked her mother about it, who reassured her not to worry and told her that “it was how God created you… your skin looks different, but you are normal.”

“My little brother also was born with albinism; we were the first children of both my maternal and paternal families to have albinism. It was difficult for our parents, but we were very loved at home,” Nyirahabimana recounted.

It got worse when she started school and had to walk five kilometres every day, but she recalls with a smile how her father would worry and follow her to school daily, standing up for her against those who mocked and called her names. “I would always walk and look back to see my father behind me,” she said.

Her primary school teacher wasn’t the friendliest; he called her ‘Mukarumanzi’. Even today, she still wonders why he called her that when he knew her real name, as it had nothing to do with albinism. “I have never dared to ask him,” she admitted, “and it has followed me my entire school life.”

Despite the challenges, Nyirahabimana learned to ignore other children’s taunts and derogatory remarks. However, her impaired vision presented a significant obstacle. “Sitting in the first row in class was not enough; I could not see anything and write fast enough before they erased the blackboard,” she explained.

“As we moved to upper classes, children became unkinder to me, and they started complaining every time I would stand very close to the blackboard, obstructing their view, and the teacher would punish me.”

To her parents’ dismay, Nyirahabimana dropped out of school in primary five as she couldn’t take more abuse from other school children, and the fact that the teacher was not protecting her was unbearable for her.

“I had never met anyone else who had albinism, apart from my little brother,” she recalled. “When I started to go to the market with my mother, that’s when I saw other people with a similar condition. I never knew they existed before, and it made me feel better to see that my brother and I were not the only ones. I could see that they had also noticed me, but we would not even greet each other.”

Nyirahabimana got married at a young age, and her marriage brought its own set of challenges throughout the years as her husband fell into a cycle of alcohol abuse and domestic violence.

“My husband never had any issues with my skin,” she acknowledges, “but his relatives were always concerned whenever I had a newborn baby; they would come to check for signs of albinism. Thankfully, all my children were born without it.

“Unfortunately, my husband’s drinking problem got worse and he continued to abuse me physically and emotionally,” she narrated, “and that’s when he even started talking about my skin. I decided to leave him after we had our last child in 2013. I went to live with my parents, but I had so many children, and we could not fit in their small house. The older children were sleeping in the kitchen outside.”

Before her father passed away in 2017, he gave Nyirahabimana a home in another village, but it was in disrepair. “I moved into the house with my children, and we could see the sky as the roof was half destroyed,” she recalled. “I started to grow beans and a small banana plantation, and my son would support me by working on construction sites,” she added.

In 2018, Nyirahabimana joined a group of people with albinism to learn more about her condition. She admits not knowing that she needed to use sunscreen, which damaged her skin and deteriorated her eyesight. The group taught them how to wear sunscreen and a protective hat daily.

She also joined a savings group with other people living with albinism, which allowed her to buy iron sheets. With the help of her adult children and supportive neighbours, she started rebuilding her house. In 2019, they finished repairing the house’s walls and roof.

Despite her struggles, Nyirahabimana remains hopeful for the future. “My peers and I are enjoying free sunscreen, but most of us suffer from eye impairment; I am currently battling a wound in my eye that refuses to heal despite surgery,” she said, her voice filled with emotion. “But we also hope the next generation with albinism will benefit from free specialised eye treatment.

“In our group of people with albinism, my peers shared their stories, which were heartbreaking,” Nyirahabimana said with sadness. “Numerous individuals faced rejection from their families, leaving them homeless and traumatised. Discrimination and health limitations also led to poverty for many of us.

“Despite the challenges I faced growing up, I always tell people that I am happy, and I owe it to the love I received from my parents; I could always turn to them when I had a problem,” she said.

ALSO READ: People with albinism need inclusiveness, not pity

As my visit ended, Nyirahabimana’s two sons, Enock Mutuyimana and Honoré Mutabazi, returned from visiting their friends and burst into the house. She insisted on offering me something to eat, to which I agreed. We enjoyed Imbada (a type of pancake), Rutsiro delicacies, and cold homemade banana juice. Before we said goodbye, we took a family portrait. While taking the photo, all I could think about was the power of love. Her resilience grew from the abundant love she obtained from her parents.

Alice Kayibanda is a documentary photographer based in Kigali.



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