In celebration of #InternationalAlbinismAwarenessDay and Youth month in South Africa, we are proud to present the following conversation with Perpetua Senkoro; a young person doing amazing work in albinism advocacy. May we all learn from her passion, and in our own way do work that is meaningful to us.
Tell us a bit about yourself; your family and community, and the experience of growing up with albinism within that space?
I was born in Mwanza, one of the regions bordering Lake Victoria, where I spent my early childhood. Kindergarten was not that complex. I was free to improvise anyhow in class in such a way that my visual impairment did not feel weird. The name-calling I experienced from people around me because I used to walk to school made me start to wonder about my condition.
I never experienced problems with my family, considering the fact that both of my siblings also have albinism though our parents don’t. In fact, my mom always made sure that we wear protective clothing and stayed out of the sun, while my dad always bought us books, so we had a habit of reading a lot, which was extremely helpful especially in primary school where our visual impairment was a great challenge.
I remember hating the fact that I would go in and find notes or test questions on the blackboard but I couldn’t see a thing. Sometimes no one wanted to read for me, some of my classmates teased me each time I tilted my head trying to read what was written on the board. I hated it when I had to pretend to write and when the teacher collected our exercise books for marking mine was empty. I hated Maths because teaching was done on the blackboard where I could not read. I hated my walks to school and back home because I would get teased all the way. I was a loner and I hated school altogether. Primary school to be precise, but weird enough, in mid-term and annual exams (which were printed on paper) I always came first, second or third of my class.
I used to be ashamed of my condition. Every time I got teased I grew even more ashamed. There was a time I wished to be locked up somewhere away from everything. As I grew into my teens, I became more insecure with myself, I remember, each time I made a new friend, I would say to them, “you know I have lots of spots on my skin eey” in a way to see whether they’ll still be friends with me or not. However, as I grew older, that gradually went away, and when I began volunteering at Under The Same Sun, an NGO advocating for rights of people with albinism, things changed completely. For the first time, I understood what albinism is, and I met people like me who faced what I have but succeeded anyway, I met people like me who encountered terrifying experiences that made me thankful and appreciative of the good that I was blessed with. I graduated university with a law degree and am now an employee of this NGO
What is Under the Same Sun and what is your role within the organization?
Under The Same Sun is a non-governmental organization advocating for rights and welfare of people with albinism. Our headquarters are in Surrey Canada, we operate via our offices in Tanzania Dar-es-salaam and Mwanza.
In the organization, I am an advocacy and human rights officer mainly responsible for reporting on the situation of human rights of people with albinism in different African countries to international human rights platforms including the United Nations and African Union. This role goes hand in hand with other activities related to advocacy and public awareness raising.
You use your voice to raise awareness and educate people about albinism; how do you think this work has changed you? What has been the most challenging aspect of this work?
My work mostly involves lobbying which requires great social skills. Most of the time I meet people more educated, exposed, of different nationalities and most times of very high status. This was a great challenge considering I’ve never been that much of a social person, but now I’m already used to it.
I have learned to accept and love myself. Better yet, I am full of confidence and morale to reach my full potential to achieve greater goals. I’m in no way ashamed of myself, and I no longer feel obliged to justify my flaws to anyone. To make it simple, my albinism no longer hurts my feelings.
Where do you think we stand on defending the rights of PWA on the continent, what still needs to change?
Most people with albinism are uneducated hence lack proper advocacy approaches as well as the drive to do this work for the sake of bringing forth societal change, instead they do it merely for earning a living. Most albinism societies in the continent are struggling with this issue so much that even potential donors are afraid to fund them due to poor financial management and accountability. In the end, those who suffer the most are the people with albinism at grassroots’ level. This needs to change if we are to move forward and do better.
What are you hoping other young people with albinism take away from your story?
I wish for them to learn that its ok to have albinism. That if they love themselves, accept themselves and become confident enough to show their full potential. We will get more graduates, leaders and many-many professionals with albinism and this will not only elevate our place in the society, it will also eliminate the belief that we are abnormal and useless.