Jayne: Sky is the limit

I was born in central Kenya in the middle of 1986 by a woman I don’t even have a clear picture of what she looks like.  This proves a Kikuyu proverbial saying that “giving birth is no big deal; raising the child is”. The mystery was revealed to me in 2004, when I was 18 years old and my grandma told me she was not my mother. I had lived for all these years thinking she was my biological mother. Hearing this was shocking, my knees felt weak and I was almost fainting.

She described the events as if they had just happened; it was so clear and vivid in her mind. I had no room for questioning as I didn’t want to hurt her feelings. She told me that my mother conceived me when she was in high school and she tried to discontinue my life.  Luckily I survived the tragedy. I had been only seven months in her womb, so I was put in an incubator for two months. She stayed with me during that time, but as soon as we were discharged, she took off, never to return again.  This was just because of my color: I am an albino.

I was left with my grandmother who was jobless, had no land, and was looking after her three children. Due to financial instability, I had to work hard in the fields and look after the cows. I would only take a rest when my sunburns became too painful and watery. My grandma would then allow me to get in the house and do other chores, as well as my schoolwork. My childhood had no laughing moments. This molded me into who I am today; I find it hard to stay idle.

All my schooling life has been in Nyeri, except for a brief stint between 2006 and 2008 in Eldoret.  I attended Mumbuini Primary School between 1993 and 2000, when I sat for my K.C.P.E. (Kenya Certificate of Primary Education).   Here I was the only person with albinism,  “Mzungu” (a white person) as they nicknamed me.  It was too hard to cope since I was naive about my condition. I would be called demeaning names, told insulting comments, even by the teachers; there was no one to defend me.

My grandmother had no idea of the special care I needed because of my condition, so I would hide the fact that I could not see the blackboard.  In school I would hide in the tea bushes and cry while my classmates were reading and writing, until the bell rung and I would go home.  At times in class I would ask a question and everyone would burst out laughing with the teacher ignoring me. This seriously affected my self-esteem from an early age. In most cases the teachers and pupils first judged me because of my condition, before giving me any opportunity to prove myself.   They didn’t think I was a normal person like them, hence teased and rejected me outright. I had no friends, thus spent most of my time reading books, my nose rubbing the pages as I had to look so closely to the text. This earned me the name of “bookworm”. Despite my low vision and other challenges, I was always at the lead in my class.

Sunshine came to my life when a team of vision therapists from the Low Vision Project, in the Kikuyu hospital, brought their free mobile clinic to a nearby church.  I went to meet them accompanied by my grandmother. They prescribed glasses and advised me to wear protective clothes and use sunscreen, which was too expensive for us to afford.

This was my turning point and my frequent visit to P.C.E.A Kikuyu hospital begun. I was also enrolled to the Nyeri Integrated Education program and they would visit and motivate me during their regular follow up clinics.

I attained 407 marks at K.C.P.E and proceed to Chinga Girls High School sponsored by Dr. Petra Verweyen from the low vision project team. Here it was more challenging, I remember an incident when I was in form one and there was a common shower room “kasarani” the girls would surround me as I bathed, it was so dehumanizing. This happened severally but I tried to gain courage since I knew it was the only life I had and I couldn’t be in someone else’s shoes. I had to let them get used to me. They mocked me and it was traumatizing that I opted to skip showering to escape the mockery and funny comments regarding my body. The self-confidence I had acquired was dismantled by the various incidences.

I could now share my problems and fears with a few friends I had made and my teachers who helped me to cope in all aspects. The low vision team also kept a close follow up and this gradually changed my personality.

Crisis rose again when I chose three science subjects and my teachers strongly opposed my choice.  They thought I could not manage it. I totally lost my ability to smile. This raised the alarm for the vision therapist from Kikuyu. One day he and two of his colleagues stormed into our school and requested the administration to allow me study and discover my potential.

They also addressed the whole school and explained them that I was just like any other person, only that my skin lacked melanin and I had low vision. After this, I made new friends and the whole school now treated me like a normal person.

Due to my boldness to fight with the stigma, I was elected the school head girl in 2004. This changed my personality and to date I have never lost my smile again.

In the same year I sat my K.C.S.E (Kenya Certificate of Secondary Education) and, despite the hardships I had undergone, attained a B-.

I then wanted to study clinical medicine, but I was rejected because of my low vision. I changed my mind and decided to enroll for law studies.  I applied to many institutions, yet again it was all in vain.  I was about to give up when I got an unexpected admission letter from Mosoriot Teachers College!  I liked the idea of imparting knowledge to young minds, so I took up the opportunity positively.  At college people seemed to have some awareness about albinism and visual impairment.  For the first time in my life I met and became friend with other people affected by my same condition.  Listening to their experiences, I realized mine was nothing compared to what others had gone through.  To fight the misconception that we were special, we formed the “Mosoriot Special Needs Club” with great motivation and contributions from the Kenya Society for the Blind.  We organized an awareness day, after which half the college joined our club; we had over 500 members.  We organized sensitization and awareness campaigns in the Eldoret region.

I graduated in August, 2008 and was very lucky to win a one year scholarship to study in India, in the International Institute for Social Entrepreneurs (IISE). Where I emerged as one of the best participants of the year.

Soon after completion I returned to my home country Kenya with a lot of zeal and zest to change the situation of persons with albinism in my country. Inspired by Rick Guidotti  www.positiveexposure.org who does exactly what I always wished to do I had consultations with him and we decided why not have Positive Exposure in Kenya. The project is still in its initial stages   kickstarting and so far we have been doing great. We have had exhibitions, talk shows, public lectures and awareness raising in learning institutions. We are also in the process of engaging in forums to champion the rights of persons with Albinism and particularly the recent killings reported in East Africa. I still believe that sky is the limit and I belief with continued public participation on issues of albinism we shall have an Africa where all people will be treated equally regardless of our differences.

I’m also working with rural women who have kids with albinism to realize their potential by engaging them in sustainable economic empowerment  i.e. green house farming and we are still brainstorming on the issue of  micro credit for small scale business.

In life, the biggest achievement I would love to have is imparting knowledge to people, that we are all equal regardless of our color, tribe, race, abilities and disabilities.


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