Grace Mumbi Ngugi,
Judge of the High Court of Kenya and co-founder of the Albinism Foundation for East Africa
As a young girl, Grace Mumbi Ngugi heard stories of people living with albinism dying of skin cancer before their 40th birthday. Now at the age of 53, she has long conquered the fear of dying young, and has learned to live with her condition and feel comfortable in her own skin.
Meet Grace Mumbi Ngugi
Facing unawareness
My experiences with discrimination are less severe than the experiences most people with albinism have had. The circumstances I grew up in, the schools I went to and my professional training all helped make my life and experience less difficult than they would otherwise have been.
However, my life has not been smooth sailing. It has never been easy especially when a large proportion of society is avoiding you. In fact, finding jobs for people like me is almost impossible because the world is convinced we are intellectually challenged, or a bad omen, or just objects of curiosity.
When I was growing up, I was always the centre of attention in every crowd I was brave enough to appear in. When I walked into a public place, everything would come to a standstill and I would feel everyone’s eyes tearing me apart. Some voices were loud while others whispered, but they all analysed me, mostly in disparaging terms.
My mother once took me to Kenyatta National Hospital in the capital, Nairobi, to seek help for my poor eyesight, but the doctors did not even know that I could be assisted with glasses, at least to protect my eyes from the glare of the sun. It was not until I was in high school that I finally got glasses with photo chromatic lenses.
There was little information around me about albinism so I scoured every little bit of information from reading books and magazines. I learned about preventing sunburn through use of sunscreen. I didn’t see or use sunscreen until I was about 17 years of age when I discovered it in a supermarket.
Perception change
The problem lies in societal perceptions where children born with albinism are shunned, denied education and later employment opportunities, and treated as if they don’t exist. What many people don’t realise is that albinism is not painful, neither is it a disease that will kill you. It simply is a lack of the melanin pigmentation in the skin, hair and eyes, which makes us look different on the outside, but not on the inside.
I am one of the co-founders of the Albinism Foundation of East Africa, which came into being in 2008. We want to ensure the social acceptance of people with albinism. It is not fair for people with this condition to die unemployed, uneducated, unaccepted, and maimed or killed for witchcraft rituals.
The myths and misconceptions about albinism are also distressing. Some parents believe that children with albinism can ‘tan’ if they stay in the sun. This, of course, only leads to great damage to their skin. Many fathers abandon their wives when they produce children with albinism, without realising that both parents have to be carriers of albinism for a child to have that condition.
A better future
The situation may seem hopeless and depressing, but I believe the future is promising for people with albinism. We have a new Constitution that guarantees all Kenyans a right to health. I believe the Government will wake up to its responsibility soon and make sunscreen available in all hospitals for people with albinism, particularly children.
We all need support systems to see us through life, particularly when it has the kind of challenges that many of us have had to deal with. I am blessed with such a system: my family, an extended family that loves me for who I am, and a couple of great, close friends who have been a great source of strength for me.