Surviving amidst stigma, albinos tell their stories

L-R: Hassan Mulondo, Olive Namutebi, Faith Bwanika Kasaga, and Antonio Baligowa Walujyo

What you need to know:

Albinos are some of the most marginalised groups in the country. There are also a number of myths associated with them, the most common being that they do not die but rather simply disappear. It is such myths that force some albinos to keep to themselves. However, a number of them have managed to beat the stigma. They spoke to Sarah Tumwebaze on how they have managed to make it in life.

Hassan Mulondo, 32, General secretary of the Uganda Albino Association

I am the second born in a family of nine, four boys and five girls. My grandmother helped my mother at the time of birth and she told me that when I was born, my mother was in shock.
She could not believe that I had a different complexion from my elder sister and because of this, she refused to breastfeed me for the first two weeks of my life. However, my grandmother fed me on cow’s milk. But she never stopped talking to my mother, asking her to breastfeed me.

Also, the fact that my father accepted me because I looked exactly like him helped in making my mother change her attitude. At two weeks, she started breastfeeding me. That was the only time I was discriminated in my family. But all my brothers and sisters loved and accepted me. However, it is when I started school, that I was most stigmatised. Students never called me by my name but rather called me namagoya (albino).

Thankfully, my grandmother had prepared me for all this so I never paid any attention to their name-calling. I always responded positively and with time, they stopped. But one of my worst experiences was in Primary Three.

One of the teachers paired us up and gave all of us seats. She gave me a back seat, yet one of the challenges that albinos have is their eye sight. I was short sighted and therefore I could not see what was on the blackboard.

While she was writing, I stood up from my seat and went to the front. She turned and said, “Gwe namagoya, kiki kyononya?” (You albino, what are you looking for?) When she said this, everyone in class laughed so hard. I felt so small and felt like just running out of class.
But my grandmother had told me that to get anything in life, I will have to stand my ground. So during break time, I walked to the headmaster’s office and told him the whole story.

I do not know what he did to the teacher but he went to class and got me a front seat. What I am right now is a product of what my grandmother told me as a child. She always encouraged me to take up leadership positions so that I could have authority over my would-be discriminators.

So from Primary Three to Senior Six, I always held a prefect position. This helped me cope. I now have a Bachelor’s Degree in Commerce with a specialty in Marketing. I am married with three children and one other child from a past relationship.

They all have a normal complexion. While some of my wife’s relatives were strongly against our relationship, she was strong and we have been together for seven years now.

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Antonio Baligowa Walujyo aka AB Walujyo, 29 Conductor and upcoming artiste

I am my mother’s only child and I grew up in Jinja with her. But unlike other children, I never got to see my father because my mother told me he rejected me when I was two days old. When he saw me, he said they do not give birth to albinos in their clan so there was no way I could be his son.
Since then, my mother never saw him. The only thing I have are the pictures I see of him wearing the army uniform. But lucky enough, my mother has always been there for me even though she did not have money.

This explains why I never got to go far with my education which hurts me to date. However, my greatest challenge was the mockery I used to get from people while growing up. I remember people in the community used to call me an albino. I know I am an albino but I also have a name. But they instead chose not to call me by my name and they also used to avoid me.
At first, I would get mad but with time, I got used to their mockery and would ignore them. I think this helped because they started getting close to me and in this way, I managed to make friends although I had to leave them.

In my early 20s, I decided to come to Kampala where I got a job as a conductor. It’s not an easy job since I have to be under the sun but with time, I got used. Besides, the sun, I have to bear with the passengers who make bad comments about my colour. However, I am used to that. So I ignore them.
But what keeps me coming back to work every day is that fact that I earn at least Shs7,000 to Shs10,000 a day.

More so, I do not want my children to end up as I did. This is why I put my talent of singing to work. I have six audio songs and one video. My dream is to get a promoter who will put my music on market. I am sure with the money I will get from the music industry, I will be able to buy my own taxi. The moment I get these two, I will then think of starting a family.

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Olive Namutebi, mid-30s, Audit manager at Post Bank

I am a first born in a family of four. I was raised by a single mother and I just thank God because as a young parent, she had to take care of me, someone who was looked at as some kind of weird thing in society. But God gave her the courage to go through it with so much stigma and myths plus all sorts of ideologies of how she could make me attain the black pigment.

People used to tell her to dip me in some sort of alcohol for my skin to turn. Even at birth, one of the student nurses that was present was shocked and remarked that I was different from other babies but the mature nurses around told her that I was a normal baby.

They counselled my mother so I think that is why she was able to stand by me. But my father disowned me. He said he was not responsible for me on grounds that his family never had albinism but aunts from his side told me there was someone with albinism in their clan.

Nevertheless, my siblings treated me with respect. In school I was lucky because I was not treated differently but I always made sure that I got a front seat since I am very myopic. Sometimes, people and children in the community would come running after me shouting, “Omuzungu” meaning white person, meanwhile the adults would call me namagoye (albino) but people tell me I used to abuse them. While I do not remember, I honestly think I did abuse them as a defensive mechanism.

No challenges at school
I cannot say I found any challenges at school. At times I used my unique skin complexion as an advantage for example I used to tell teachers that they do not beat me and they believed me. I know it was a naughty thing to do but who wants to be beaten?

At university, I did a Bachelor of Commerce in Accounting. After that, I looked for a job for five months but it seemed like five years and my first job was with Microfinance Enterprising Development Network (MEDNET). In this job, I used to source for funds for projects around the world, I went to over 10 countries and met all sorts of people. Once in Morocco, I met a gentleman who was shocked to learn that I was from Uganda. You cannot believe that people in some countries do not even know that albinos exist but I tried to keep away from people who tried to probe too much. I always find it intrusive.

Meanwhile, here in Uganda people get shocked to see me driving. They say things like, “So even albinos can drive.” Its offensive but I think I am used to such comments.
But while I was able to make it safely through school with no teasing, other people like me find it hard. That is why my message to the teachers is that they should give the best they can do to make people like me sit at the front because we do not see well.

They should also tell the class that we just have a different skin colour from the other children but we are not any different from them as the stigma in schools towards people like us is too much. But if the teacher tells the class they will listen. The communities should also know that we are not disabled.

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Faith Bwanika Kasaga, 32, Administrator at Pearl Institute

In a family of more than 15 children, two of us were two albinos but my brother died at the age of 17. I am told that the day I was born, my father had just returned from a trip to Germany. My father told me that the doctors said my mother’s ovaries had a problem and that I had not developed to full term.
Since my father was in the labour ward, he was so mad. He told the doctors their work was to help his wife give birth and not to come to conclusions they were not sure of. So I was safely delivered into this world.

Both my parents were not only strong but also happy to have me. They took me home and pampered me like all my other siblings who also adored me. However, as a child, I was always indoors because my parents were afraid that the sun would affect me.

In the sun for the first time
The first time I came out of the house was at five years when I was going to school. At first, I was affected by the light. I could not see but with time I got used. In nursery school, I did not face any challenges. But when I joined primary school, that is when I felt out of place, I even lost my self-esteem. Children were always talking about me. Some were even bold enough to approach me. They would pinch me thinking that my skin might peel off and because of this, I always kept to myself. But one day, in Primary Five as I was seated by myself, a boy came with a razorblade. He cut me on the left arm. It was a very bad experience; I was scared and I cried. When I reported him to one of the teachers, he defended himself saying he wanted to see if my blood was also red. He was later punished and cautioned never to do the same.

In secondary school, I would still be teased and called names but by then, I had regained my self-esteem through reading a lot on albinism and I had learnt the trick of surviving among people who thought I was different from them, so I always made sure I held a leadership position. With this, I would command respect. However, when I joined campus, I did not face any challenges and fortunately enough, I was able to get a job as an administrator at Pearl Institute before I completed my studies. I believe I have always had God’s hand in my life because right now, I am married to a loving husband with whom we have a one-year-old daughter who is not an albino.