TALES OF COURAGE: I conquered the stigma of albinism - Daily Nation

TALES OF COURAGE: I conquered the stigma of albinism

Wednesday June 13 2018

Gideon Kilonzi’s life has blossomed into something he could not have imagined even in his wildest dreams when he was growing up. PHOTO| COURTESY

Gideon Kilonzi’s life has blossomed into something he could not have imagined even in his wildest dreams when he was growing up. PHOTO| COURTESY 

By MARION MAINA
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Like a desert flower, Gideon Kilonzi’s life has blossomed into something he could not have imagined even in his wildest dreams when he was growing up.

The happy and confident young man overcame discrimination, rejection, despair and loneliness that came with being born with albinism and testifies to the power of attitude in transforming his life.

The 33-year-old says that the people in his life never let him forget that his skin and hair colour were different. His father avoided being seen with him and found his son’s condition embarrassing. With his mother passing on barely a year after giving birth to him, Gideon had no one to turn to for parental love. 

MOTHER’S DEATH

After the death of his mother, Gideon was taken to a children’s Centre in Kitui where he grew up. His father turned into a raging alcoholic who never once came to visit Gideon until he was 16 years old. The only family member who came to visit him once in a while at the centre was his sister Agnes who also had albinism.

Gideon also had a brother with a similar condition and the three bore the trauma of being different together.  Discrimination against them was spearheaded by their father and it had a ripple effect to their other nine siblings.

DISCRIMINATION

“Primary school was fun particularly because I was always being among the top three students in class. The children were not extremely mean although they would stare at me a lot. I got used to it as I understood their curiosity. It was a different story with the teachers. I could not wrap my mind around how a grown adult, a teacher, would discriminate a child based on their skin colour. The snide remarks, open stares, I saw it all and it was disheartening. When I joined high school later, things did not change much. People still stared at me. Some fearfully. Others in shock. I always felt like I was the clown in a circus or a specimen under observation.”

Unfortunately, Gideon had to drop out school in Form Three due to lack of school fees.  He came back home in Mwingi hoping to make himself useful in the community, get a trade and hopefully resume school.

As the days turned into months and years, the chances of him going back to school appeared bleak. He could not find work. His condition made it difficult for him to get casual labour such as at constructions sites due to exposure to the sun. To make matters worse, the neighbours treated him like an alien. His elder sisters refused to accept him as one of them.

COMING TO THE CITY

In 2006, Gideon decided to relocate to Nairobi. His sister Agnes had relocated to the city after getting married and she offered to host him. He lived with her for three weeks before moving out to live with a friend he had made while staying at his sister’s home.  

He often washed clothes for his close friends so as to earn his upkeep as he continued job-hunting. Martin, the friend whom he lived with, hooked him up with manual work around their home such as milking the family cows and landscaping. Working out in the sun extensively started taking a toll on Gideon’s health and he opted to quit the manual work in 2011.

 He moved to Dagoretti with the few savings he had accumulated as he started looking for more jobs that would be a bit more bearable. The jobs were not forthcoming so he decided to start making mandazi and hawk them to earn an income.

GETTING INTO BUSINESS

“I started out with Sh107. My first sale amounted to Sh 300 and soon I was in business. I would sell the mandazi very early in the morning and in the evening to avoid the hot sun. When I moved to Dagoretti, I had a small space near my house where I grew flowers. I have always loved flowers; they bring out the beauty of life. My friends would visit me and say that flowers are money. I never thought much about it.

Gideon and Ruth Omondi from the Open Society Initiative for Eastern Africa (OSIEA). OSIEA supports persons with albinism in their quest to enjoy human rights. PHOTO| COURTESY

Gideon and Ruth Omondi from the Open Society Initiative for Eastern Africa (OSIEA). OSIEA supports persons with albinism in their quest to enjoy human rights. PHOTO| COURTESY

After three months of selling mandazi, I realised my flowers which I would tend to during the day were increasing by the day. I needed more space. I approached Kenya Forest Services to get space to plant the flowers and maybe sell them. That’s how my business begun. Currently, I have a similar business in Ruaka. I am planning on opening another one at Garden city soon. Business is good.”

CONQUERING HIS CONDITION

Gideon is actively involved in raising awareness on albinism. He feels that most of the people living with the condition suffer from esteem issues that keep them from reaching their potential.

Through people he has met in the line of business, he has been able to meet and empower others living with the condition in over 30 counties and also in Tanzania. He always encourages people to rise above the discrimination and myths surrounding Albinism and to take care of their health by eating a healthy diet.

 He testifies that the herbs and plants he grows have been of great help in keeping his skin healthy and glowing. He adds aloe vera to his bathing water, crushes certain leaves to use as ointment and also flavours his food with herbs for a radiant and scar-free skin. He has not used sunscreen in six months.

“The first step to living a fulfilling life as a person living with albinism is self-acceptance. After that, make deliberate effort to understand your condition so as to take care of yourself and overcome myths such as this condition being a death sentence. My two siblings who had albinism passed on. When my dad died in 2015, my sisters sold all his land leaving me without a cent because they believed I don’t have much time left. Well, I have as much chances of dying as the next person and albinism has nothing to do with it.   When I understood my condition and accepted myself, my esteem shot up. I’m able to interact confidently with clients, friends and recently I met a special lady who I am pursuing seriously.”