Everyday on my way to and from work I always saw the same mother and child sitting on the ground on the corner, not too far from my house. I could not help but notice her skin was full of blisters and she always held an umbrella over her head. One day she was no longer sitting there. Every day I passed her by and never thought about the deeper implications of this woman with albinism might face.
Several years later, I recently meet a woman in Tanzania whose name is Perpetua. Perpetua was one of the facilitators at a conference my office organized on Social Accountability in Tanzania. Perpetua challenged us to understand the need to look at the challenges of the albino community. We can miss the stories of stakeholders living in the communities that can easily go unnoticed so I invited her to share her story.
“I remember hating going to school and finding notes or test questions on the blackboard where 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 because I could not read those questions written on the blackboard. When the teacher collected our exercise books for marking mine was empty.
Being teased or bullied became like a greeting, it was expected as I walked to school from neighbors and other children. My self-esteem was eroding, and not just from being teased, the very walk to school was potentially a walk to death. I thought the only solution was for me to just disappear, or be locked away.
Those of us living with albinism in Africa, live with the threat of being killed, maimed or even abducted every waking hour. I automatically jump when a car approaches, or at the sight of the headlights. I recoil when I see someone approaching me on the street or when I hear footsteps behind me. Living with albinism is like having a death threat over your head from the day you are born. Every day you wake knowing this could be the day you are killed by someone who believes our body parts can bring them prosperity. Even in death, our graves are disturbed because our bones are believed to have magical powers, at times you can even find our bones hanging in the markets for sale. Many die from skin cancer because of not being able to afford sunscreen or can’t afford protective clothing.
People living with albinism have a host of health problems and so many of them can be easily addressed such having access to sunscreen, or having protective clothing. Many students with albinism drop out of school because of problems with their eyesight, or parents who won’t “waste” their money on a child that society has deemed cursed, or taboo.
We are condemned by society as being less than human and it is the same society that makes up the church. The Church preaches and teaches that we should “LOVE the Lord thy God with all thy heart, soul and mind.” And love thy neighbor as thyself. Does this mean only the neighbor that looks like us? Those who live with Albinism – we are your neighbors yet we are invisible members of the community. Where is the voice of the church changing this narrative?
In spite of all the challenges I faced in life, I did well on exams that were printed on paper. I always came first, second or third in my class. I now can say with confidence that I, as well as every child born with albinism, are children of God. Being born with albinism in Africa was not a mistake but offers us an opportunity to help all to know what it means to love God and your neighbor as yourself. I thank God because I went to University and graduated with a law degree. And I now work in advocacy for people living with albinism as well as educating communities about the invisible neighbors in our midst.”
Thank you Perpetua for sounding the alarm on an issue that is critical in our communities across Africa. I come from the generation who watched Mr. Rogers on public television. I never knew how radical and powerful the song was that opened Mr. Rogers’ neighborhood until I reflected on this question of who is my neighbor and how I embrace the many different neighbors across the world with many different abilities, colors, and backgrounds:
Won’t you be my neighbor?
It's a beautiful day in this neighborhood,
A beautiful day for a neighbor.
Would you be mine?
Could you be mine?...
I've always wanted to have a neighbor just like you.
I've always wanted to live in a neighborhood with you.
So, let's make the most of this beautiful day.
Since we're together we might as well say:
Would you be mine?
Could you be mine?
Won't you be my neighbor?
Won't you please,
Won't you please?
Please won't you be my neighbor?
I invite you to pray for people living with albinism in Africa.
Pray for the OAIC as we work with Perpetua and others in various communities across Africa on the challenges of people living with albinism.
Pray that we will not limit our neighbors to those we socialize with or live in close proximity to us but instead see the whole world as our neighborhood.
Thank you God for expanding our vision. You put people in our path to show us how easy it is to miss the obvious. Help us not to be distracted by the noise all around us and expand our understanding of who are our neighbors. AMEN
Rev. Phyllis Byrd serves with the Organization of African Instituted Churches (OIAC) as the Director for the Just Communities Program. Her appointment is made possible by your gifts to Disciples Mission Fund, Our Church’s Wider Mission, and your special gifts.