Message from the founder
Vicky Ntetema
Former BBC Journalist, UTSS Executive Director
For decades we have concentrated on persons with albinism and covered general issues about albinism and challenges faced by persons with albinism. Now we would like to focus on women who suffer discrimination, stigma, abandonment, alienation, rejection, and other human rights violations just because they have given birth to children with albinism. While the society has been empowered with the knowledge about albinism, these mothers are still blamed for bringing babies with the genetic condition into their families.
In a patriarchal society like Tanzania, convincing men that a child is born with albinism when both parents carry the gene with the genetic condition. The 2021 report titled People with Albinism Worldwide, by the first UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism, Ikponwosa Ero describes extreme human rights violations that mothers of children have albinism experience because of their gender.
“After having a child with albinism, women frequently face blame and abandonment. This is often due to a lack of awareness about albinism and the fact that it is a genetic condition inherited from both parents. Women are often accused of having caused their child’s pale colouring—some are accused of infidelity, while others are accused of having a curse that manifested in their child’s appearance. Consequently, many mothers of children with albinism are abandoned by their partners or spouses. “…mothers suffer post-natal depression after giving birth to a child with albinism as they do not know how to raise the child who is different from other children and even members of the family,” says Ero
SMOTA gives mothers of children with albinism a platform to share their life journey with the aim of inspiring and empowering other women who find themselves in a similar predicament. In the process these brave women expect to find the healing they have always longed for, to raise more awareness about albinism, wider challenges and the solutions associated with the genetic condition. These mothers, who for years have been suffering from psychological trauma and physical atrocities for decades are now the voice of voiceless women fighting for social justice and inclusion in their family, clan, and community in general.
Are you that woman who has defied all odds and become a role model for women and mothers of children with albinism?
Do you know a mother of a child with albinism who has made a difference?
Do you have a mother, a sister, a wife, a grandmother, or an aunt with a child with albinism and who is willing to connect with others and form a support group through their storytelling?
This is the place to open up about their trials and tribulations of these courageous women and allow others to learn from these incredible women! Let us stand with mothers of children with albinism!