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Grace Nzomo On Living Positively With Albinism

In this stunning headshot, Grace is wearing a red tam and lip color. The colors are a bold contrast against her thick gold statement necklace.

“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 disadvantaged.”

Grace Nzomo

Growing Up In Kenya With Albinism

Grace Nzomo, a psychology graduate from USIU-Africa, is a 25-year-old woman who is living positively with albinism. “Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. Albinism occurs in all racial and ethnic groups throughout the world.” While many people are unfamiliar with the term “albinism,” many are aware of the word “albino” (sometimes used as a derogatory remark towards people living with albinism).

Throughout her life, Grace has faced bigotry and injustice simply because she has albinism. When she was enrolled in school her teachers had no idea what albinism was nor how they could meet her needs. In each of Grace’s classes, her mother explained to the teachers why Grace required accessibility so she could receive an adequate education.

Because of her poor eyesight, when she reached the high school level, Grace’s teachers decided she would be unable to learn chemistry, physics, and geography. She was also informed that since she was visually impaired, it was mandatory for her to learn braille. For Grace, this was unsettling as she felt ostracized because of her sight. In the end, she taught herself how to use braille yet because of its complexity she equated its use in mathematics to teaching someone the Greek language.

The education system in Kenya prevents students who use braille from studying among other subjects, chemistry, physics, and geography. Improved braille transcription in Kenya is sorely needed especially as far as the science elements are concerned. Unfortunately, approximately 70% of Kenyan children with albinism attend schools for the visually impaired at primary and secondary school levels. It’s here where they are forced to learn braille yet they are not totally blind. Grace says this approach “narrows down the student’s career choices by 50% which is very unfair and a violation of their rights to holistic education. However, this should not deter persons with albinism from realizing their full potential. Given the opportunity, they can study in mainstream schools and obtain careers in whichever field they desire—be it Business, Hospitality, Banking, Medicine, etc.”

There are innumerable misconceptions associated with albinism. Most children with albinism in Kenya are kept hidden in the ‘backyard of society’ away from others where they acquire very poor self-concept which later on leads to low self-esteem. Others are raised 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.

Grace Nzomo

Living With Discrimination In Graces Words

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 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 politician has been told by a witch-doctor to get my hand or leg in order to win that tough election.

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.

Choosing The Empowerment Route

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 disadvantaged.

I engage in part-time modelling as I see fashion and beauty a way 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 where persons with albinism are fully integrated, appreciated, and empowered to realize 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.


Image Description:

In her stunning headshot, Grace is wearing a red tam and lip color. The colors are a bold contrast against her thick gold statement necklace.

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