As the world marks International Women’s Day on Friday, a small group of people living with albinism, especially women, continue to struggle to find their place in the working world.
Albinism, a noncontagious and genetically inherited condition, occurs worldwide, regardless of ethnicity or gender. It most commonly results in the lack of melanin pigment in the hair, skin and eyes, causing vulnerability to sun exposure, which can lead to skin cancer and severe visual impairment.
They are often subject to myths such as having sexual intercourse with someone with albinism would make you rich.
For women like Stibiri Fiona, if this fails, you are quickly branded a ghost and a curse, and are abandoned.
“Someone who abuses my nature, I feel so bad and so small,” she said. “I feel like even shedding tears. I feel like going even to collect my mother in the grave to ask her why she produced me in such a color.”
WATCH: Women With Albinism Struggle to Find Work
Earning a living
This is life for many Ugandan women living with albinism.
Nawejje Doreen Mayanja is the chief executive officer of Women and Children with Albinism, in Uganda. On the outskirts of Kampala, she provides support to women living with the genetic disorder who can’t find jobs in a formal setting.
“When you are qualified, it is a bit competitive to get a job. And just because most of these women were denied the chance to go to school, they are not educated, they are not empowered. You find that they are living below the poverty line,” she said.
Working as a primary school teacher, Fiona was married for eight years and has four children. Her husband asked her to stop working, believing her albinism would enrich him to take care of the family.
When that failed, she was allegedly ordered out of their home by her father-in--law.
Now crowded in a one-room house with her children, Fiona’s search for a teaching job has not been fruitful.
“When I went there to apply for vacancies, they refused,” she said. “They said children will fear you. Even other teachers looked at me as maybe a curse. So, as per now, I don’t work.”
According to a 2017 United Nations report, people with albinism face discrimination and barriers that restrict their participation in society on an equal basis with others. As a result, they are more likely to experience social exclusion and poverty.
Ugandan legislator Safia Nalule, who represents people with disabilities, introduced a bill Thursday in parliament on the social, economic and cultural rights of people living with albinism.
“I am bringing this bill, first of all, to ask for great awareness about raising persons with albinism. That they are not different from us. It is only a genetic disorder which actually brings about albinism,” she said.
The prevalence of albinism varies across the world. According to the World Health Organization, estimates vary from 1 in 5,000 to 1 in 15,000 people in Sub-Saharan Africa. In Uganda, it is estimated at 1 in 3,000.
While the killing of people living with albinism is low in Uganda, a report by the Ugandan parliament indicates many are trafficked to Tanzania and parts of Kenya for human sacrifice.