I was discriminated against right from birth, says nominated MP Isaac Mwaura

In her new book released a month ago, folklorist and writer Emily Urquhart reveals her tribulations after she learned that her baby had albinism. She speaks of the dark tales and superstitions that have long surrounded her daughter’s genetic condition.

Beyond the Pale is a disturbing reminder of the brutal violence many people with albinism continue to face today.

Closer home, Nominated MP Isaac Mwaura’s story highlights the stigma people born with this genetic condition face.

“I was born in Kiambu but my father disowned me and my mother due to albinism.”

Mr Mwaura says discrimination in society is rife right from birth. It is also hard to cope in school where ridicule from other children is common. “Poor instruction methods by teachers fail to take care of special educational and social needs,” he adds.

And it doesn’t end at the institutions of learning, he added. “In employment, most are not absorbed into the mainstream sectors and if you look at statistics, very few are in gainful employment.”

The legislator links the horrors that persons with albinism go through with absurd superstitions: “Over 80 persons with albinism have been killed in this manner. Just recently, children were either killed or their limbs chopped off as a result of bizarre beliefs. There is a nexus between the ritual killings and general elections in Tanzania.”

He calls for political goodwill to battle what he refers to as genocide. “We need concerted efforts at regional level to battle this malaise. I have written to the East African Community Secretary General asking that the matter be addressed at that level. We are yet to get feedback.”

Mwaura, 33, is the Kenya Disability Parliamentary Association chairman and was nominated to represent the special interest groups. And leading by example, he is sponsoring the education of two children living with albinism.

The agitation for equal rights and fundamental freedoms in Kenya can be traced to mid 2006, when the Albinism Society of Kenya was formed by, among others, Lady Justice Mumbi Ngugi.

Mwaura notes that the biggest killer of people living with albinism is skin cancer due to inadequate pigmentation. Majority cannot afford sunscreen lotions and prescription glasses, while early cancer screening and treatment is hampered by low literacy levels and poverty among those with albinism.

According to Mwaura, about 2,500 persons countrywide collect a bottle of sunscreen lotion each month from health facilities.

“Our focus is to get the right type of lotion. The first procurement was done unprocedurally and the product has affected our members. We remain vigilant to ensure our people get quality sunscreen and that Kenyans get value for money,” he says.

Milestones of hope

That persons with albinism have earned top positions in public and private sectors has brought hope to many. “Today, we have a first ever female judge with albinism, Mumbi Ngugi, who has proved herself in her work,” says Mwaura, who is the first MP with albinism in Kenya.

Another milestone is inclusion of people living with albinism into the National Youth Service, which Mwaura terms a huge impetus given the fact that this is a paramilitary training.

But lack of an official national register on the number of persons with disabilities remains a challenge for planning and support of programmes targeting this group. “We still insist that government must count us since its so easy to identify us within the population,” says Mwaura.

“The greatest barrier that persons with albinism face is negative attitude and the white man’s legacy in Kenya. That ‘in betweenness’, the sense of illegitimacy and alienation, can only be tackled through all of us joining our hands together and saying no to discrimination.”

And as he signs off, Mwaura cannot hide anxiety of his wedding due in two weeks.