Parents or guardians of children with disabilities are the first-hand receivers of whatever society throws at children with disabilities. As a parent, they make decisions on behalf of their child. The parent is faced with the decision of how best to provide care. A similar challenge happens to mothers of children with albinism. Society perceives the birth as a result of infidelity. Their spouses are quick to dump them and often they are rejected by the family of their spouses. The children are seen as a result of ancestral curses and a bad omen to the family.
In this article, we feature the story of Brenda Atieno a mother of two with one child with albinism. She is married but not to the father of the first child with albinism. The biological father came to see her child but immediately left after seeing that the child had albinism. She encountered rejection from the family of her now-husband. He was highly discouraged from marrying her because they termed the union as “introducing a curse to the family.” Before getting married, Brenda worked as a house help after one week of giving birth and she’d receive a salary of 1000 monthly. She was later employed as a teacher and that is how she managed to raise her child. Brenda was introduced to sunscreen, by her neighbor who saw the pain her child was experiencing after being exposed to the sun. Her child used to cry and turn pink and, Brenda didn’t understand the cause of her child’s pain. The neighbor explained the condition to her and advised her to use sunscreen. She was constantly being told that she gave birth to a bad seed by her relatives and has encountered several cases of her child almost being trafficked at school. On one occasion there were men claiming that her child is worth a lot of money and, they were discussing how they can traffic the child to a neighboring country. Brenda also witnessed another incident, where a woman claiming to have been sent by the mother of her child came to her child’s school and was requesting to see her child. She was claiming that she had been sent to deliver a shirt to the child. The woman did not realize that she was talking to the actual mother of the child.
The situation of mothers of children with albinism further exacerbates due to limited income opportunities. Young mothers of children with albinism give more attention to their children due to the risk of such children being stolen for sale, this means that they cannot work like their other counterparts. This situation worsened immediately after the pandemic struck. COVID-19 made the few who had economic opportunities lose them and now most of them are stay-at-home mothers who depend entirely on their husbands while the other half waits for odd jobs such as doing laundry for others to sustain themselves and their children.
The big question is, as a society, what support can we offer the mothers of children with albinism? And the guardians of children with disabilities in general?