“As the World marks the historic international Albinism Day, I feel honoured on this great day to salute people who have risen above this condition and made a mark in the society.
Just over a decade ago, we only knew the devastation albinism inflicted on those living with the condition. Often when people living with albinism hit the headlines, it would be for the wrong reasons- If not kidnapping, it will be on disappearance, human sacrifice, trafficking or bizarre killings that are characterized by disappearance of vital body parts.
But somehow, the sad narrative associated with this special interest group in the country has been changing in the last few years, with people like High Court Judge Justice Mumbi Ngugi, nominated MP Isaac Mwaura and myself blazing the trail in our respective fields
Today, we have largely transformed what it means to live with albinism. More effective protective and preventive programmes have been established, that now save thousands of lives while awareness has soared and research has surged.
Societal misconception around albinism have been uprooted to a certain extend by awareness programmes being implemented by the National Council for Persons with Disabilities (NCPD) in conjunction with Albinism Society of Kenya, Albinism Empowerment Network and many other non-state actors.
NCPWD with its partners, apart from intensifying awareness creation initiatives geared towards changing the negative societal attitude towards persons with albinism, has also made it possible for people with the condition to freely access sunscreen lotions in all county referral hospitals across the counties.
You can also read, Albinos urged to get free sunscreen lotions
But more still needs to be done, considering that many people with the condition live in abject poverty, there is urgent need to decentralize the distribution of sunscreen lotions to dispensaries and health centres which are nearer to persons with albinism.
And it should not be only sunscreen lotion that is distributed for free at all hospitals, poor eye-sight is a single major debilitating problem to people with the condition. NCPWD should decentralize the provision of eye care services to the counties.
In September, 2015, Mr Enoch Jamenya, from Vihiga County who lived with albinism was attacked by unknown people who tried to chop off his ear and fingers, with his ordeal sending shock-waves across the community.
The 36 year old later unfortunately succumbed to the deep cut injuries he sustained from attackers who reportedly wanted his body parts taken to Tanzania, which was preparing to hold a general election at the time.
Although it was the only recorded death in the last one year, one life is too many. His brutal attack is still prove that danger lurks everywhere for people with albinism and the government together with the community should find ways of safeguarding those with the condition.
Although, we hail our sister Ms. Ngugi, who was appointed during the coalition government to her post at the Judiciary, We are yet to see Jubilee government appoint a person with albinism in senior position of governance in our country as a demonstration of being inclusive.
With Mr. Mwaura for representing the group in parliament, there is need for the number of people from the fraternity serving as legislators to be increased. One MP and two MCAs is not enough.
The Government and other decision makers must go the extra mile to ensure implementation of Article 100 of the Constitution is fully addressed to include persons with albinism at all levels of governance and representation.
However, even with this expansive provision county governments have deliberately violated this law by not targeting this sector in service provision and employment opportunities even when law States that 5 percent of job opportunities should go to persons with disabilities.
As we gather to celebrate this auspicious occasion as leaders of this great movement let us affirm our commitment to continue with the fight against streotypes associated with the condition of albinism.
Let us stand with our people every step of this journey until we reach the day that we know is possible, when all children and persons with albinism can be free; a day when all persons with albinism have access to both eye and skin care within their reach; the day when there are no child with albinism being locked up by his parents on the basis of his condition of albinism and when we achieve, at long last, what was once hard to imagine – and that’s an equal society irrespective of your gender; color and tribe.
That’s the society I want for my son. That’s the society that all of us want for our families. And if we stay focused, if we keep fighting, and if we honor the memory of those that we’ve lost, if we summon the same courage that they displayed, by insisting on whatever it takes, however long it takes, I believe we’re going to win this fight. And I’m confident that we’ll do so together.
Martin Pepela is nominated MCA living with Albinism and CEO of the Albinism Empowerment Network.
