Vice Principal at Nkhoma School of Nursing and Mid-Wifery; Chairperson of the African Disability Alliance; Programme Manager, Malawi Network of AIDS Service Society Organization (MANASA); Albinism Activist

Grace Massah Malawi

I was born in Malawi, Lilongwe district but raised in three regions (Central, Southern and Northern). I am a twin and the 2ndborn of six children, two of which have albinism. I grew up in a loving, caring and supportive middle class extended African family and had all the basic protective mechanisms. The fact that my older sister has albinism, my mother was already well mentored when I came along.

My primary school life as quite interesting, I went to two primary schools which exposed me to new people and it was a challenge getting used to them. Although my fellow students called me names in school, wondered if I was normal, if she drunk water differently, I never really felt isolated and soon got used. My biggest challenge was teachers not knowing how to accommodate me in class. As a person with albinism, I suffer from shortsightedness, which is common with people with albinism, but my teachers always forgot to prepare special materials for me and I also always ended up writing her exams alone as they never remembered to prepare for exams on time. I could not copy notes from black boards and always had to ask my friends who at times felt that I was slowing them down. As other students got time to play, I spent that time catching up on notes I wasn’t able to finish during class time. I commend my parents for always being at the fore front in advocating for my needs as they made sure I had the necessary materials and that I and my siblings were not abused in school.

The biggest challenge as a teenager was not knowing how to handle the social stigma, people called me names and it was very hurtful. I developed the passion to advocate for people for albinism because I did not want them to go through what I had gone through. I was in a market one day and heard a man telling his friends how he can never take me to his bed. What made him think of me that way, to begin with? We have not advocated for our rights enough, I did not say anything to that man in the market and yet I should have. Little is being done on the ground. People look at you like they have never seen anything like you. When I am in a relationship with someone, people want to know who that person is that can love me, me a woman with albinism. How can anyone love her, she cannot be living the same life that we live, they say.

I am a programme manager at Malawi Network of AIDS Service Society Organisation (MANASA), Vice Principal at Nkhoma School of Nursing and mid-Wifery and a Board Chairperson and Board Member for the African Disability Alliance South Africa and the Association of People with Disabilities in Malawi respectively.

In the future I hope to attain a PhD in Policy Development, preach the Gospel, and see women with albinism enjoying their human rights to the fullest and women in Africa leading in higher profile positions.Young girl living with albinism today, achieve more than I have been able to achieve, reach where I was not able to reach. Focus on you intelligence and wisdom and not your outlook. Work hard and be proud of yourself. But always remember to pray and lean on God.



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