Prime
Advocate for rights of people living with albinism
What you need to know:
- Today, more than two years down the road since the publication of that article, I would be wrong to say that PWAs in Uganda have ceased to be marginalised or discriminated against because of their perceived difference.
My article titled, ‘Government should formulate a policy for persons with albinism’, that appeared in the Saturday Monitor of February 2, 2019 was the first I ever wrote in a newspaper publication. This was after closely and fondly working with many persons with albinism (PWAs) and experiencing their plight first-hand.
Today, more than two years down the road since the publication of that article, I would be wrong to say that PWAs in Uganda have ceased to be marginalised or discriminated against because of their perceived difference.
But at the same time, I can confidently say that notable progress has been made and for that, I commend the government, development partners, civil society organisations, and most importantly, PWAs spread across the country.
Among the notable achievements is the recognition of albinism as a disability category in the newly enacted Persons with Disabilities Act, 2020. This is because in the prior legislation regarding disabilities, albinism was not recognised.
Other key milestones recently realised include the waiver of import taxes from the life-saving sunscreen lotions, improved public education and awareness, formulation of a National Action Plan on Albinism, and improvements in albinism-related data collection and research.
With the above achievements notwithstanding, people with albinism in Uganda and across the world continue to be subjected to various forms of misrepresentation and discrimination. There is continued violation of their human rights at the hands of witchcraft-related beliefs and practices, myths and superstitions.
As has been routinely reported in the media (by the way, this is also a milestone!), PWAs face multiple societal challenges but in my view, two of them stand out. 1) Inadequate access to healthcare: Due to the nature of their bodies, which are characterised by the absence of melanin in their hair, skin, and eyes, most PWAs are prone to skin-related diseases and visual disorders. Actually, it is estimated that over 90 per cent of PWAs die before the age of 40, especially due to skin cancer.
Discrimination due to ignorance. Surprisingly, this is not only practiced by the rural and illiterate communities, but also the elite and literate. In the course of our work, we have come across many cases of discrimination against PWAs involving medical workers, teachers, security personnel, and other more educated members of our society.
Admittedly, like many other Ugandans, I also had a rather false negative perception about PWAs in the past. But having worked with over 500 PWAs in the past three years, my colleagues and I at Every Child Ministries (non-profit organisation) have had a complete change of heart. Our deepest fears subsided and the focus instead shifted from those fears to celebration, love and advocacy.
Therefore, as Uganda joins the rest of the world to commemorate this year’s International Albinism Awareness Day today, I would like to appeal to the government and other stakeholders to prioritise PWAs and using the progress so far made, continue to advocate for their human rights.
To the persons with albinism, amid the barrage of societal and personal challenges, you have done incredibly well and I have no doubt that you can achieve to the best of your God-given abilities. But in order to create a positive mark in your societies, you will need to focus on what you can control while showing strength beyond all odds!
Brian Mukalazi, Country director, Every Child Ministries Uganda.
