Childhood is one of the most important phases in life. A time in which we are supposed to learn more about ourselves, to be adventurous, build friendships, explore, be curious, play in the sun and let our imaginations go wild. But what if instead of being adventurous, you became cautious; instead of exploring the world you feel the world’s eyes on you. What if you could not play out in the sun and your games were dances in the moonlight? What if you were living with albinism? What if all you wanted to do was play in the light?
In Africa, 1 in 4000 people are living with albinism, and this is still widely seen as a curse. In countries such as Tanzania or Malawi, these people are stigmatized and, shockingly, abducted for antiquated and fatal rituals, including the extraction of albino blood to ‘cure’ ailments and the rape of albinos to ‘cure’ HIV/AIDS. It is believed that an albino’s body can fetch up to $75,000 because of these myths.
Tumeliwa is living with albinism. She is young, soft spoken—in no small part the result of growing up with her condition in sub-Saharan Africa—beautiful, humble and terrifyingly smart. She started a project called “Front Seat”.
“I wanted this project to help create a society in which people were made aware of the needs of people with Albinism. We wanted to create a conducive learning environment for people with albinism through educating parents or guardians, teachers and the targeted learners with albinism.” The name Front Seat was chosen “because teachers don’t know, you know, that students living with albinism cannot see properly—they need to sit in the front seat”.
Together with her partner, Bosco, Tume targeted community public primary schools. At the end of Front Seat’s interventions, many community members understood for the first time that albinism is a genetic skin condition and not infectious through touching. Front Seat gave out calendars that had advice and tips on how to care for people living with albinism. The project also attracted media attention through radio and national newspapers as well as on social media.
Tume has managed to create networks with other stakeholders and organizations that are also looking to make Malawi a better place for those living with albinism, including the Albino Association of Malawi and local clinics.
She has also developed her project management and leadership skills. ‘Being part of Students With Dreams taught me that good plans result in easy implementation. It has also taught me that challenges should be expected but never should they set you back. I have met brilliant leaders and learnt to be artistic in making interventions, and know that bringing change to the society doesn’t always require billions or men in suits,’ she says with a laugh.
We all learned something from the project and strongly believe people with albinism should not have to live in fear. Schools should see beyond the skin condition and embody the ‘front seat philosophy’ for children living with albinism. As Tume believes, every child, with proper care, can play in the light!