My name is Grace Nzomo, a 24 year old lady positively living with albinism and a psychology graduate from USIU-Africa. Many people are unfamiliar with the term “albinism,” but nearly everyone has heard of “albino.” And that is only the tip of the iceberg of the misunderstandings that face me. When I was born and had reached a school-going age, I was enrolled in a school where the teachers had no idea what albinism was nor how they could deal with it from their side but they did their best. In every new class I proceeded to, my mother had to explain to the class teacher that I had to sit at the front of the class and every other teacher who was teaching me had to write legible letters and numbers on the board. This was because I was short sighted and had to get really close to the board in order to see clearly.
As a person with albinism, I lack the pigment Melanin in my eyes which leads to reduced vision. The degree varies from person to person and only an ophthalmologist is competent enough to assess that level. My high school teachers took one look at me and decided that I cannot learn chemistry, physics and geography due to my ‘poor’ eyesight. I was also informed that since I was visually impaired, I had to learn Braille as I would be using it in my final exam. That took a very long time for me to accept since l felt that they were indirectly saying that I’m blind. To make it worse, I never got along with the braille instructor and I ended up learning it on my own. Using braille in mathematics was like trying to teach someone the Greek language and that’s a whole chapter of challenges on its own.
According to the education system in Kenya, if someone is using braille in school, s/he isn’t allowed to study chemistry, physics and geography among other few subjects because the braille transcribers in Kenya are not competent enough to transcribe the right thing especially as far as the science elements are concerned. Unfortunately, at present 70% of Kenyan children with albinism attend schools for the visually impaired at Primary and Secondary School level where they are required to to learn in braille with no option yet they are not blind. That basically narrows down their career choices by 50% which according to me is very unfair and a violation of one’s rights to holistic education. However, this should not deter persons with albinism from realizing their full potential, given the opportunity; they can study in normal schools and take up careers in whichever field they desire: be it in Business, Hospitality, Banking, and Medicine etc.
There are innumerable misconceptions associated with albinism. Most children with albinism are kept hidden at the backyard of society away from others where they develop a very poor self-concept which later on leads to low self-esteem. Others are raised up in single-parent families since the father disowns the mother and child alleging that his wife has been unfaithful to him with a ‘white’ man hence bearing a child with albinism. In school, fellow students treated me like an object of fascination and the questions never seemed to end. ‘Why is your skin white? Is that your real hair? Can you feel pain? Why are your veins blue? Is your blood blue too?’ and on and on.
In the past, children with albinism were left in the sun so as to ‘develop’ pigment so as to be ‘normal’ like the others. Unfortunately, this only led to skin cancer as the child grew older. Nowadays, because of who I am, there is a market for my body parts in neighbouring Tanzania, particularly during the election period because some politicians have been told by a witch-doctor to get my hand or leg in order to win that tough elections.
It seems people with albinism are worth more dead than alive because when we are born, we are hidden away from the discriminative society and when we grow up and can no longer be hidden, then we are hunted down for our body parts to make the most potent portion to guarantee wealth, success, fertility… you name your problem, even our bones will solve it. Such violence in its many forms is too close to home and this is the albino mentality by the society that we need to eradicate.
Supporting the efforts of Dr. Choksey Albinism Foundation is in the interest of my work to improve the lives of people with albinism. As its former programs officer, I still dedicate my time and skills to provide workable resources to children with albinism and their parents who may have never had the hope of living fearlessly in this discriminative society. Looking into the eyes of a beautiful young lady and providing encouragement is the spark I need to continue in my mission to empower people with albinism. I am very passionate about education and ensuring its accessibility to the less disadvantaged.
I engage in part-time modelling as I see fashion and beauty as ways through which I can express myself and create awareness about albinism in a world which is filled with innumerable stereotypes about it. I believe that when one is comfortable with their own skin colour, then they have the confidence to face the world. In my free time I engage myself in reading novels, swimming and dancing the Latin dances especially Kizomba which is my favourite.
I envision a society in which persons with albinism are fully integrated, appreciated and empowered to realize and live up to their full potential. Being able to brighten the lives of those I come into contact with is only the beginning and accepting opportunities of impact will take me even further.