Raising awareness about people living with albinism: Thembsie Mchunu

Thembsie Mchunu is an educator, advocate and campaigner. She also works as a Trustee for the Anglican mission agency Mothers’ Union. Dedicated to Mothers’ Union since 1978, she has held positions at parish, diocese and national levels in South Africa. Particular passions include fighting violence against women and children, and campaigning for the marginalized, such as those with albinism.

Albinism is an inherited condition that affects the production of melanin, the pigment that colours the skin, hair and eyes. Thembsie will take part in the Anglican Communion Office webinar on Human Dignity. She spoke to the ACO about the lives of people living with albinism, the Lambeth Call on Human Dignity and the need for greater awareness of the condition.

Over many, generations, false stories and myths have developed about what albinism really is. Generations of people have been consumed by ignorance and lack of knowledge, especially in Africa. 

The myths include saying things like: ‘The mother was impregnated by a white man’; ‘The woman has brought a curse within the family’. In such myths, it’s always deemed the woman’s fault and as a result, the child is labeled ‘Isishawo’, meaning a curse in the Zulu language. Ironically, this ‘curse’ is also seen as bringing luck when making traditional medicine.  The mother is often marginalised and the child is then a victim to traditional healers who kill them to use their body parts for ‘Muthi’ – good luck medicine.

When a person with albinism dies, they are not given a dignified burial service. Instead, they will be secretly buried in the middle of the night by close relatives to avoid exhumation by the traditional healers. With this comes another myth that people with albinism don’t die, but magically disappear.  

Mothers and their children with albinism live with trauma, fear and bullying for the rest of their lives.  Not only is this a real threat to human dignity and human rights, but it is against the biblical principle that we are all made in the image of God.  

My plea to the churches across the Anglican Communion is as follows: 

• Publicise educational articles on Albinism. 

• Churches can help to be myth-busters and teach the local communities about albinism. 

• People with albinism are extremely sensitive to the sun and burn very easily. Churches must support people with Albinism by providing body cream, sunscreens, hats and lip balms. These become very expensive for the parents. 

• Church members should visit schools educating students and teachers about albinism. 

• We need to challenge our governments to identify albinism as a disability so that they can access and be provided with social grants. 

• People with albinism often have poor eye health. We need to advocate for free or lower eye test fees.  

People with albinism deserve to be treated with dignity and respect.