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An Albinism Story

Questions asked by the Teacher in bold!

Doll introduction: Simanye (Persona Doll)

How old are you?
What language/s do you speak?
Who do you live with?
Do you have a younger brother or sister?

Simaye (which is a Xhosa name for ‘unite us’) is a 7 year old. He lives with his mother, father and younger sister who is 5 years old turning 6 on the 4th of November, in an apartment. At home they speak isiXhosa and English and they have recently moved to a new neighborhood. Simanye and his sister have both started at a new school not too far from their home.

 

Where do you sleep?
Who sleeps with you?

Simanye says at his new home, he now shares a room with his sister but they each have their own bed. He is happy to share a room with his sister because his sister no longer has nightmares at night.

 

What do you think of his spectacles?
Who do you know that wears spectacles?

Simanye say he often does fun things with his younger sister. Yesterday they went to a waterpark and he says his younger sister splashes a lot and they had fun. They both got very wet, even his spectacles got wet. Simanye has to be careful because he broke his old pair of spectacles when he was running around outside. He is very happy with his new pair of spectacles because he got to choose them.

 

Do you like to draw?
What is your favourite colour?
Do you enjoy reading or looking at books?
What kind of books do you like best?

Simanye and his younger sister go to school aftercare while his mother and father work. At aftercare he gets to draw, play games and sometimes play his favourite sport which is rugby with some of the boys. Simanye likes to draw and his favourite colour to draw with is red. The aftercare teacher always reads them a story and he enjoys reading books about wild animals and he is so excited because recently he has learnt a lot of new information about Megalodon (meaning big tooth) which is type of a shark that lived many years ago.

 

What is your favourite food?

Simanye loves sushi and Italian dishes like pasta and pizza. Sometimes his parents take him out to eat at The Spur and he loves that. He also loves his vegetables because he knows that they are good for his immune system.

 

Simanye says thank you, he has enjoyed getting to know you and hopes that you feel the same way. He has to leave now and would like to visit again.

 


 

Topic – Teasing (Living with Albinism and wearing spectacles)

 

Do you know what albinism is?
Do you know anyone with albinism?
Why do you think that it is not ok to refer to people with albinism as ‘’Albinos’’?

Simanye is 7 years old and has met some new children at his new school and they laugh at him and say he looks funny because he wears spectacles and has albinism. Simanye’s friend Ben doesn’t laugh at him because he knows that the spectacles help Simanye see better. Ben says Simanye looks very special when he wears his spectacles and he sees nothing wrong with how he looks. Ben doesn’t like it when other children at the school refer to Simanye as an ‘’Albino’’.

 

How do you think Simanye feels?
How do you think Simanye’s friend Ben feels?
Do you think it is ok to refer to someone as ‘’inkawu’’ or ‘’whitey’’?
Do you know anyone with four eyes?
Why do you think the children at his new school laugh at Simanye?
What do you think Simanye should do?
Who can he ask for help?
What do you do when someone laughs at you?

Simanye doesn’t know what to do about the children at his new school who are laughing at him because he wears spectacles and has albinism. He say some of the boys call him ‘’Whitey’’ or ‘’four eyes’’ and others refer to him as ‘’inkawu’’ which is a Xhosa name for an Ape. He tried taking his spectacles off but he can’t see very well without them because Albinism is a condition whereby someone is born without pigmentation, the substance that gives colouring to the skin, eyes and hair. This affects the eyesight because of abnormal development of the retina and patterns of nerve connections between the eye and the brain.

 

Do you think that Albinism only affect certain races?

Simanye says sometimes some of the children at his new school ask ‘’if he is also white like Ben?’’.

 

Are you children sensitive to anything? – it could be food or things you are allergic or sensitive to?

Simanye has just told me that Albinism affects people of all races. People with albinism often have very light coloured hair, pale skin and light –blue eyes. Their skin is very sensitive to the sun, and they need to wear special sunscreen lotions, sun hat and sometimes protective clothing.

 

He wants to know if you want him to tell you what happened when he come back next time?

Simanye says you’ve given him good ideas! He’s feeling better now. He will speak to his mom and dad and ask his friend Ben to go with him to tell the children. He says thank you very much.

 

He says he will and thank you once again.