Albinism is just a condition, accept us

As the World marks the International Albinism Day, I feel honoured to salute people who have risen above this condition and made a mark in 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 kidnappings, it would be disappearances, human sacrifice; trafficking or bizarre killings characterised 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 Mumbi Ngugi and nominated MP Isaac Mwaura blazing the trail in their respective fields. Today, we have largely transformed what it means to live with albinism.

More effective protective and preventive programmes have been established, which now save thousands of lives while awareness has soared and research surged. Societal misconception around albinism has been reversed to a large extent by awareness programmes being implemented by the National Council for Persons with Disabilities in conjunction with Albinism Society of Kenya, Albinism Empowerment Network and many other non-state actors.

NCPWD and 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.

But more needs to be done. Considering that many people with albinism live in abject poverty, there is urgent need to decentralise 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 eyesight is also a major debilitating problem to people with albinism. The State should step in and give free eye-care services and glasses. 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 for rituals. Unfortunately, he later succumbed to injuries.

Although it was the only recorded death in the last one year, one life is too many. His brutal attack is still proof that danger lurks everywhere for people with albinism and the Government must find ways of safeguarding those with the condition. Although we hail Ms Ngugi’s appointment to the Judiciary, we are yet to see the Jubilee government appoint a person with albinism to a senior position of governance.

With Mr Mwaura representing Albinos in Parliament, there is need for the number of people from the fraternity serving as legislators to be increased. One MP and two MCAs are not enough.

The Government and other decision makers must go the extra mile to ensure implementation of Article 100 of the Constitution. Equally, article 174 of the Constitution on the objects of devolution stipulates the need for promotion and protection of the rights of minorities and marginalised groups.

As we gather to celebrate this day, as leaders of this great movement, let us affirm our commitment to continue with the fight against stereotypes associated with the condition of albinism.

Let us stand with our people every step of this journey until we reach the day 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. We should all be focused and committed in building a country and world free of unnecessary barriers and full of that deeper understanding that we are one, irrespective of our skin colour.