Self-Description - Fabulous
Her Inner Light - Empathy for others that comes from a compassion for herself
Her message to women everywhere - “Love who you are. Don’t let situations define your destiny. Take charge of your life."
"I am a Kenyan born 29 years ago in a small village called Chinga,” Jayne Waithera begins her story in a lyrical voice that is a joyful song all its own. "I appear white. For me to be born white in a black dominated culture, I stood out. I don’t think there was anyone else in the entire county who looked like me. Because I had no skin color, I was treated differently, and it came out like something was totally wrong with me.”
Jayne is strikingly beautiful. Her honey-colored curls and the constellation of freckles upon her regal forehead and cheekbones. Her soft eyes, framed by champagne-washed eyelashes and eyebrows, are full of light. Then there is her smile, wide enough to invite anyone in, wide enough to bring her all the way to the United States from Kenya on a fellowship directly from the White House, wide enough to withstand the multitude of hurts in her life. If her voice is a concert, her smile is the opening curtain. Jane was born with albinism, a rare recessive genetic condition characterized by lack of pigmentation in hair, eyes and skin.
“When I was a toddler, my mother left me in a field,” Jayne continues. "She left to no return, and I only saw her again for the first time when I was twenty-four.” So great is the social stigma in Africa of birthing and raising a child with albinism that mothers abandon their children. Others aren’t able to protect their children from those who believe that body parts of albinistic people have magical powers. Ignorance and superstition have created a black market in Africa for albinistic children, who are kidnapped, sold, dismembered and murdered, their body parts used by witchdoctors as ingredients in potions and rituals. Still many others believe that those born with albinism are cursed, and they are persecuted and murdered for exactly the opposite reason. Fortunately for Jayne, her grandmother found her and brought her home.
"My grandmother loved me unconditionally. She did not see me as different even when everybody else did. Now remember this is a woman who never went to school, who had zero knowledge about albinism, who could barely afford to put food on the table let alone buy sunscreen. But in the thick and thin she was always there for me. This was how strong of a woman my grandmother was, to go against everything and everyone else to raise me up,” Jayne says. The first thing Jayne’s grandmother did everyday when Jayne got home from school was check her body for signs of abuse. Children regularly came up to pinch Jayne's skin just to see it change color. Children with albinism usually attended special schools or no school at all. But Jayne’s grandmother enrolled her in a regular school with all the other kids.
“Throughout my life I was called lazy, stupid, ugly, a demon. Sometimes I was punished for not getting something correct. I could not explain to people about myself because I didn’t know beyond the fact that I looked different that I also had other physical challenges,” Jayne says. Like many children with albinism, Jayne was legally blind. She recalls not being able to answer questions when called upon in class simply because she couldn’t see the information presented. Despite physical disability and social persecution Jayne persevered through primary and high school and qualified for university. Thanks to her grandmother, Jayne grew up believing that she could have the same opportunities as everybody else.
Since her grandmother could not afford her university fees, Jayne waited over a year to start. She then enrolled in a program that her grandmother could afford, one that specializes in sciences and math. There she was told she was not smart enough to make it through the program. But Jayne challenged the dean’s decision, and she did well. Upon graduation, she got a scholarship to attend a social entrepreneur leadership program in India. She came out of the program with a clear mission, which she put to work immediately upon returning to Kenya.
Jayne founded Positive Exposure - Kenya (http://positiveexposure.org), a nonprofit organization whose mission is to bridge the information gap on albinism. Her program runs workshops on albinism: Albinism is neither a curse nor an ingredient for magical powers. Children with albinism can’t be ‘cured’ by being left out in the sun to brown. They need sun protection. They need support for their visual impairment. Jayne also has plans to launch mobile support centers — cars or vans that could move about villages, however remote, to hand out information packets and sunscreen as well as organize support groups for mothers raising children with albinism.
“This work is about upliftment, about seeing humanity,” Jayne says. “We give dignity. We find someone like this.” She hunches over, withers her expression. “And we leave them like this!” She snaps back to herself, shoulders back, arms raised, head held high, her smile full of light. Albinism is Jayne's focus, but she is also passionate about women and children. She believes that every beautiful life starts with having a loving family. “I am most proud of parents who accept children for the way they are.”
When asked about her feelings towards her own mother, Jayne expresses compassion. "I am open to having my mother in my life. I forgive her for what she felt she had to do. Anyway that was her decision, which she has to come to terms with. Not me. My life is about going forward with what I have been given, not what was taken away.” So Jayne moves forward with Positive Exposure - Kenya. In her spare time, she also serves as a mentor for young girls at her high school. There are no children with albinism there currently, but she returns to those old battlegrounds so more girls can have access to the opportunities she knows about.
With her life Jayne weaves a song of strength and upliftment, and in her refrain that is also her crescendo, she proclaims, "I have challenged the status quo. People have said many things about me. She will not live beyond a few years. She cannot read. She cannot learn math and science. She will vanish soon. But I don’t let others limit me. I rise. Above all odds, I rise.”
Photos provided by Jayne