Marvelous Tshuma, a singer, song writer and actor, who is living with albinism says she was rejected by her biological father from birth because he did not understand her condition.
Tshuma (MT) told Alpha Media Holdings chairman Trevor Ncube (TN) on the platform In Conversation with Trevor that growing up in rural Binga was not easy because of dangerous myths around people living with albinism.
The Noble Hands Zimbabwe Trust deputy director and Albinism Konect ambassador spoke about her tough upbringing and what can be done to change people’s attitudes towards people like her.
TN: Marvellous, welcome to In Conversation With Trevor. MT: Thank you so much my brother.
TN: Marvellous, I thought we should sit down and have this conversation to help people all over the world understand your life, why you have become so successful and I have found your story very inspirational.
- You were born in Binga.
Talk to me about where you went to school and your early upbringing? MT: Okay. I grew up in Binga, in Samende, the village is called Samende.
It was near a school at that time because that is where my dad and my mum were working so we used to stay there.
Then when my father and mother had difficulties because of me as you know….
TN: No we do not know. So tell us. You are born, and your mum and dad see you and there is a problem in the marriage because of who you are. MT: Yah. At that time my mum used to work at this other church where there were white people, who worshipped there.
So when I was born my dad had said “Mwana uyu, she is not my child but she is the child of a white man”.
So he told her to go to her “husband”, the white man.
So my mum had to try and explain that I was an albino child, but my dad did not understand.
My mum had to go back to church and then the church tried to talk to my father, but he said no and thought it best they divorce.
They divorced and then after some time they had to sit down with elders and then they got back together.
However, I could see that there were some problems in my parents’ marriage because my dad did not love me much.
Sometimes if I was sick he would just tell my mum to take me to the hospital but other siblings would not go to the hospital.
For me that would always be the solution.
TN: How many kids were you? How many siblings do you have? MT: We are nine and I am the fourth born.
TN: So essentially your father somewhat rejected you because of who you are?
MT: Yah, because he didn’t understand.
So over time he passed away and it did not affect me because I did not know the love of my father.
TN: This is because you never had it?
MT: Yah. So we had to move to my grandmother’s (home).
So my grandmother’s place was quite a distance from the school, it was 3km away.
It was a very hard time for me, it was not safe because you know due to the prevailing myths people think that a person with albinism if you sleep with that person you will be healed of HIV, cancer and other such sicknesses.
They thought if you slept with such a person you would be healed.
In Binga you have to understand there were many witch-doctors.
There was an old lady, who said to me once that if I got my head shaved they wanted my hair!
I was still young so I did not understand what they would want to do with my hair.
Now when I told my mum she told me they would use my hair to do all kinds of rituals.
She also said all those people who are high-ranking in society would want her to take me to these witchdoctors.
When we moved around the village people would say look at that white girl.
So the fact I had all that attention, people were envious of my mother due to that.
Even at church, priests and the like would do the same.
TN: So it was a belief that because of the attention that you draw if someone would get some of your hair they would then do what they do and end up getting the same attention?
- That is the belief in our culture?
MT: Exactly. So that feeling that I was not safe in the village was affecting me.
TN: Why were you not safe in the village? Was it because people would want your hair?
MT: Yah. I remember this other day I was coming from school. We came across a motorbike in the bush.
I did not know at that time but others apparently knew, in saying that the motorbike driver wanted me.
To this day I do not know whether it was true or whether it was a lie.
When this happened we would walk from school and if we heard a motorbike moving in the bush we would run.
The motorbike would follow us.
TN: Clearly you think this person was following and chasing you? MT: Yes. We had to run home, and when I got home I told my mum and she said I should just forget about it.
My friends who I grew up with told me that the motorbike wanted my head!
TN: So your mother fully embraces you, and fully accepts you? MT: Yah. I used to ask my mum whether I was a monkey.
Then my mum used to tell me to look at myself and I would look and myself and she would ask whether I had a tail.
I would answer no. So she would then say then it meant I was not a monkey.
TN: Wow. MT: Then in Shona that saying “musope”, meaning someone who has their skin bleached.
I understand, yes, we have very light skin (albino), and that we do not have any melanin, but you do not address someone according to their condition, you call people by their names.
TN: Also living with albinism is not a choice? You did not make that choice? MT: Exactly. So not having melanin is not a crime. I now accept who I am and am happy.
Why am I happy? I am happy because I am an artist.
Even now, if this building catches fire they will say (of me) there was a white person who died in there!
They won’t even recognise you!
TN: Hahaha. They will recognise you and not me? MT: They will say there were some black people and a white person.
You see. So that attention I love it. I love the fact that I am different.
Even what I wear, I can wear red things easily while others cannot.
I can wear any colour, I can do many things, look at me right now.
TN: So tell me; that’s huge.
- You have gone to fully embrace who you are, accepting who you are, and using who you are to make progress in your life?
- How did you get there? How did you do that?
MT: It was not easy, but I think I can thank my mum and my family, my whole family and my grandmother, because even when I became an adult around 18-19 years old my relationships would stress me.
This was because some would just shout in the road that they wanted to taste a white girl!
They just wanted to sleep with me.
TN: To sleep with you for the experience?
MT: Yah. So even if a guy would come up to me and say Marvie I love you, I would not even believe them because I would be thinking that this is the type of person who wants to taste a white girl, and just have an experience.
I used to be the target of bullying in secondary school.
People used to mock me and say they liked me, but behind their friends would be laughing and say they had been accepted by a musope.
It was not easy for me, but when I grew up and began getting involved in the arts, things began to change.
TN: You used to be bullied? Is that what you are saying? Or you used to bully people?
MT: I used to bully people.
TN: Really? So your reaction was to hit back? Is that what you are saying?
MT: Yah. I used to protect myself before it comes, so that they would not get the opportunity to do so to me.
TN: Attack as a form of defence.
MT: When I started in high school everyone would gather around me and put me in the centre and start to touch my skin, my hair and say it was not soft.
So I had to be ready to fight, this experience toughened me up.
Even in the classroom, people with albinism cannot see properly, I would stand up from my seat and run to the chalkboard to read a sentence.
As I would be doing this I would be wearing a hat and go there and read then someone would say I was blocking them from seeing the chalkboard with my hat, and they would accuse me of blocking their view.
They would say I should sit down.
So I used to be tough so that even if they verbally bullied me I would be hard headed and continue reading and then go back to my desk.
TN: What you are living with, what you have is albinism which is a genetic disorder and affects you in that your body does not produce enough melanin.
- It affects your skin, it affects your hair, your eyes and affect the way that you see.
- You have problems with reading from screens because of photophobia which affects you?
- These are huge hurdles of having to deal with something that most of us take as normal? How do you deal with those issues?
MT: In regards to reading, I can say as it stands we have no other option, so I would have to read regardless.
So I will reduce the brightness of my phone and start reading up close so I can see.
If it is on the other hand something like documents (PDF’s) I will have to zoom in because my phone screen is small.
So for those I would have to buy and use a tablet or use a bigger phone for me to see properly.
Then in regards to school, in Grade 7 they wrote in large font and helped me on that.
On textbooks, when we were reading like group reading they used to give me my own textbook so that I could read.
TN: What is the best way of being helpful to people living with albinism?
- What is the best way in terms around your eyesight, being able to read, what should society be doing to make life easier?
MT: I think first of all we need to educate our communities.
We need to educate everybody with or without albinism, both parties so they understand what albinism is.
So that even in schools, when it is said a child cannot see they would understand that these people have short eyesight, they need spectacles for them to see.
It is not that me and another person with albinism have exactly the same problem, each person would have to have their eyes checked to see what the problem is and which spectacles they would need.
In my case I went to the hospital, but I did not find the spectacles that helped me to the point where I could see with them, they just told me I do not need spectacles as I was not going to be driving and the like and they said my eyes were just bad.
So for others they can see and actually read billboards, but I cannot.
So the eyesight issues will be different, but no one who has albinism has good eyesight, all of us are shortsighted so we need spectacles.
Then on the issues of skin type, we need sunscreen lotion, that is very important.
So now people actually think that a person with albinism, if they get sunscreen lotion then all is okay.
No this is not the case.
You need another kind of lotion for you to lay a foundation on the skin, for the skin to be moisturised, then sunscreen is our melanin.