Olive Auma’s earliest memories are filled with rejection and trauma. She believes she could not have been born in a society that treats people like her any worse. Born in 1995, Auma is the third born in a family of eight children and the only one living with albinism.
“I come from Abim District in northern Uganda and in our Luo culture it is believed that when a woman commits adultery, she is punished with an albino child to expose her. While the adults in my culture treat me with contempt, the children are plain scared of me. I remember trying to play with a toddler who was my own age only for the little girl to run away from me screaming. Until that moment, I was not aware that I was different from anyone else but once I became conscious of it, it was all I could think about,” Auma recounts sadly.
As she got older, the conditions did not get any better. Her schoolmates bullied and discriminated against her because of her skin colour.
“My classmates would rudely ask me; what are you? I often did not know how to answer them,” the beauty queen recollects. While her life away from home was unpleasant, she says her parents Cecilia Achuu and Paul Omugetum were sympathetic and did their best to protect her from abuse.
Hunted like an animal
They however, pushed Auma to stay in school and encouraged her to concentrate and perform better in her studies. In addition to the stigma, Auma was aware that she was prey for witchdoctors who use albinos for ritual sacrifices because their body parts are assumed to have magical powers.
“Imagine how traumatic living with knowledge that people are hunting you like an animal can be for a young girl who has to walk to and from school every day. I was always filled with horror whenever I saw strangers walking behind me, thinking they were about to grab me,” she relates.
She describes her life as a daily battle against nature and nurture. There are two main problems that people with albinism face, one; their eyes do not have the dark melanin that protects the eyes so they are extremely sensitive to light and can get affected very easily. Two, their skin is also very sensitive and can get burned easily. Because of this, the skin and lips tend to get sores on them very easily. Others develop sores and skin cancer because their skin has no protection against the damaging rays of the sun.
“We therefore need protection against the sun. We need things such as hats, sunglasses, sunscreen, long-sleeved clothing, and light coloured cotton clothing that help reflect the sun away from the body, among others,” she notes.
Calls for inclusiveness
Her dream is to change the perceptions and misconceptions surrounding people living with albinism.
“The public needs to be sensitised, protective measures and policies need to be formulated to protect us. We need to be accepted and respected like other people, government and other stakeholders should intervene,” Auma recommends. She further notes the need for representation by someone living with albinism because only they can truly understand and appreciate their challenges.
“If you have never struggled to see the blackboard from the back of the classroom where you have been forced to sit because no one wants to sit with you, you will not appreciate what a difference a front seat makes in someone living with albinism’s life. If you have not felt haunted by that stranger who kept staring at you while you walked home, you will not be ardent enough to push for sensitisation and legislation that can mean life or death,” Auma shares with passion.
Ray of hope
Recently, the deputy speaker of parliament, Jacob Oulanyah, revealed that government is working on reforms to address challenges faced by persons living with albinism.
“Parliament has been at the forefront fighting for the rights of persons living with albinism with an annual fundraising for a rehabilitation centre currently amounting to Shs75m,” Oulanyah revealed.
Born in 1995, Auma is the reigning beauty pageant for people with Albinism in Uganda. She went to Child Jesus Nursery and Primary School for her primary school education Morulem Girls’ Senior Secondary School for O-Level.
She joined Jolibuss Institute of Technology and Management where she acquired a certificate in Health Records and Information Management. She is currently working as a dental assistant in Moroto Regional Referral Hospital.