WINDHOEK – When her daughter, Alodia was born five years ago, 37-year-old Anna Ngula had no choice but to learn how to deal with society’s negative perceptions on albinism.
In light of ‘International Albinism Awareness Day’, which is observed on June 13, New Era spoke to Ngula to share her traumatic experience, as a mother with two children born with albinism.
The mother of three tells us that albinism is more of a societal challenge than a personal challenge. Yes, it was a shock when she first gave birth to a child with albinism, but what was more shocking is the level of ignorance and cruelty she experienced, as a result of having a child with albinism. Not only was she accused of ‘cheating’ on her husband but she also had to endure nasty remarks, insinuating that she was cursed for having a child with albinism.
As if that was not enough, Ngula had to correct people who refer to her daughter as “shilumbu” which means white person.
“I would always correct these people by telling them that she has a name, and she is not ‘shilumbu’, because I find ‘shilumbu’ discriminatory,” Ngula said.
Recently, Ngula learned with pain, agony and sadness on how other children labelled her daughter “a ghost” at school. This happens particularly when her teacher is not in class, Ngula learned. “She told me ‘I do not want to be white, but brown like my mother’,” Ngula shared emotionally while Alodia was minding her own business at the School for Visually Impaired where the International Albinism Awareness day was held on Wednesday.
Ngula’s first experience with Alodia
When Alodia was born, the doctor did not tell her that the baby has albinism. ‘‘Here is the baby. She is fine, but she has problems with the eyes and skin”, were the doctor’s words, Ngula recalls.
She looked at the baby and asked the doctor if the baby has albinism, and he confirmed with a ‘yes’.
“The doctor did not say anything further regarding my child’s condition, even though he promised my husband that he would provide me with counselling services and information,” reminisced Ngula who at the time did not expect to give birth to a child with albinism.
In her own words, Ngula said, “I must admit that giving birth to a child with albinism was a shocking experience to me the first time. The baby had white, blondish hair at birth, so albinism was detected and confirmed immediately at birth.”
However, there was more confusion when friends and family who visited the mother and her newborn at the hospital.
“They refused to acknowledge that the child has albinism. Some claimed that a child who has albinism would have some features that would tell that she has albinism. It created more confusion for me because I had never seen a small baby with albinism.”
During her time in hospital, a rumour spread that she did not want to accept her child.
“What was hurtful is people were spreading rumours about me, yet nobody approached me to ask how I was coping,” she said.
For the first few weeks after the birth of her daughter, Ngula had “endless why” questions since albinism is associated with many myths and beliefs, she says. “I thought about different explanations attached to albinism such as the belief that if one laughs at a person with albinism, or is rude to them, they will give birth to the child with albinism,” she reflected.
She continued: “I was asking myself if I have ever laughed at somebody with albinism. I had a teacher with albinism, and I have a friend whose aunt has children with albinism, and there was not a day where I was rude to them or I laughed at them.”
She eventually made peace with her situation when her aunt demystified the myths associated with the condition.
Albinism is a genetic disorder that makes affected individuals unable to produce melanin, the natural pigment that gives colour to hair, skin, eyes, and protects against the harmful effects of UV radiation. Affected individuals have white or pink hair, skin, and irises.
Because people with albinism do not have protective melanin, they need to take extra care of their skin in the sun.
Life continued and Ngula with the support of her husband developed coping mechanisms. “I have learned to react positively to negativity attached with albinism,” Ngula added.
Again, on December 15, 2016, Ngula gave birth to her third child, a boy with albinism. This time around, she was emotionally prepared for what awaited her.
“This time, I was offered counselling services, with the option to see a psychologist, which I did not find necessary. The doctor was concerned about me having another baby with albinism, thinking it would devastate me,” Ngula shared. Baby Anselmo is now 18 months and Ngula only wishes the best for him, Alodia and Josanna. Josanna does not have albinism. “I love my children,” she said with a smile.
‘My experience changed’
Ngula, being the first in her family to have children with the condition, had to make peace with the fact that even close family and friends mocked her for having two children with albinism.
“My experience from my daughter’s birth has changed over time, because I grew stronger with time. Despite the shaming and lack of emotional support from most friends and family members, I vowed to never be ashamed of my children,” Ngula adds. Ngula has also had positive experiences, including meeting new people who learn from her experience.
“You meet people who would admire your children,” she adds.
She is also actively involved in demystifying myths associated with albinism and is an active member of the Support In Namibia of Albinism Sufferers Requiring Assistance (SINASRA).
The founder of SINASRA, Dr Peter Stoermer explained that in some Namibian communities, albinism is regarded as a curse and a blessing in some cultures. On a positive note, Stoermer said atrocities previously perpetrated against people with albinism are decreasing in Namibia.
In countries like Tanzania, attacks against people with albinism are rife as their bodies are considered a prized asset on the black market.
“Atrocities against albinos in Namibia has come to a halt,” said Stoermer, adding that there are people who are encouraged to monitor the situation on the ground.
SINASRA will have an open day on June 23, at Etegameno rehabilitation centre in Okuryangava, as part of International Albinism Awareness day.