In Africa, when a mother gives birth to a boy child, for example in Central Kenya, women traditionally ululate five times to welcome him. But when Simon Kamau was born 40 years ago, his community fell silent, he says.
Simon was born with albinism, which shocked and confused the community, he says. A lack of pigmentation in the eyes, skin and hair characterizes the genetic condition, which villagers knew little about. Many communities in the country believe that albinism is a curse.
Simon was more fortunate than many like him who face the same problem in the community. “I was loved by my parents and relatives. There was no stigmatization within the family”, he said.
For many other albinos it’s a very different story. Not only are they often cast out by their own families, in some tribes they are killed immediately after birth. Very few albinos manage to go beyond primary school level and they have few opportunities to compete for jobs.
With the support of her family, Simon managed to go on through different levels of education despite the daily taunts he faced on the streets and to a career in the corporate sector.
But now, society is beginning to see these people differently, and he plans to use his new role to accelerate this change.
Simon’s story is not the only success story. In March 2013, Hon. Isaac Mwaura was nominated to Kenya’s National Assembly, the lower house of Parliament as the first Member of Parliament with albinism. Hon. Mwaura, who is also a founder and former vice chairman of the Albinism Society of Kenya (ASK) nomination, has brought a new narrative about people living with albinism- it has shown that they can also lead and that their contribution is needed in the country.
The Albinism Society of Kenya (ASK) is a non-governmental organization founded in 2006 with an aim of sharing the experiences of people living with albinism; stories of stigma and discrimination, of living as a minority group in cultures and societies that are ignorant of their rights, needs and condition.
One of the key objectives that ASK aims to achieve this year is to carry out interactive sessions and dissemination workshops throughout the country, in a campaign that seeks to educate people about albinism.
To help the organization achieve this objective, Airtel Kenya has connected the albinism society of Kenya to the internet for free. This is expected to provide seamless and effective internet connection to the organization, giving its members the freedom to freely interact with the internet.
Airtel Kenya CEO Adil El Youssefi explained that, “Through our seamless internet connectivity, we are enabling the albinism society of Kenya to drive its organizational research, public education and awareness, connect and interact with its members, stakeholders and the world. By doing so, we believe that we will be enabling the organization’s campaign that is being supported by Hon. Mwaura, Simon and many other supporters to make a difference in the society.”