According the Kenya census 2019 The There are 9,700 people living in Kenya with albinism. The United Nations has identified the persecution of people with albinism as a worldwide human rights issue.
The history and pride of persons with albinism in Kenya will not be complete without the Heroes and heroines within the disability sector who stood by you when structures and systems were being born.
On behalf of them and myself am not demanding you establish bill board like Uncle Atwoli of the labor movement in Kenya but remember the legacy can’t be wiped away.
According to Under the Sun, a human rights coalition for people with albinism, from 2006 to 2021 more than 600 attacks on people with albinism have been
recorded in in 30 countries in Africa. This is only what is reported. Kenya has not been left behind for the quest of policy change and establishing social protection programme for persons with albinisms. Although in 20221 the nation was shocked by the budget cuts.
Where are the gallant soldiers when the budget cuts for the Albinism programme was being reduced?
Is this what our fallen heroes and heroines with disabilities expected of us?
Like many persons with albinism and families across the country right now, many are shocked and have lost all confidence in where the current budget cut is taking them. I know for those persons with albinism who were getting the goods and services this might be the only hope they had with government of Kenya on social protection.
Who will stand for this gap left when my kinsmen have been put in to the conveyor belt?
In other words, are persons with albinism put on the chopping board as we watch?
Don’t we know the exacting veracities facing majority of persons with disabilities?
Several studies and reports have demonstrated the y realities which most persons with albinism face in life experiences as they pursue social, economic, political and cultural activities [IDA 2019 UN 2015[.
as a public policy scholar, I have analyzed the meaning of this budget cut but am yet to grasp the answers!
Worst still, it had to take place during this unforgiving Covid pandemic era. Were persons with albinism involved in public participation on this budget cut process? The UNCRPD 2006 and Kenyan constitution expects organizations of persons with disabilities and their representatives to be consulted and engaged meaningfully.
Is this the blink future of the Kenyan disability sector?
After the Wamalwa policy drive for persons with albinism now persons with developmental disabilities have been advocating for a kitty too. Will this kitty come to life?
Or will the sleeping Blind and visually impaired sector arise? In Swahili they say “Ukiona cha mwenzako cha nyolewa chako kitie maji!”
Could the Kenyan treasury explain how the marginalized persons with albinism will survive in the next phase?
Or is there an intention and elaborate plan of ensuring all persons with albinism will be enrolled to the national health insurance fund and then it becomes easier for them to access sunscreen, clothes and cancer testing and treatment?
I believe the structural and systemic barriers faced by all persons with disabilities need to be relooked deeply and ensure policy makers at different levels engage widely as they produce policy measures. As disability sausage media we have learned a lot during this last year of pandemic – learning while analyzing and writing on this website. We believe we need to be prepared for a completely altered future, in low-income countries and globally. This message needs to be reflected to all organizations of persons with disabilities depending on the generation you are in. persons with disabilities need to focus on different areas:
1. The working methods and your resources: you had to completely change your way of working in 2021. These changes are abrupt and unprepared for. you need to ensure you always have the ability and resources to react and adapt.
2. Partnerships: To be effective, you need to collaborate with others – you need to invest in partnership. you should reach out to work with those creating policies in health, in preparedness, in the labor market, in education, etc., to ensure they can and will build systems and policies that are inclusive and accessible to all persons with disabilities, including those with multiple identities.
3. Intersectionality: It has been clear during this pandemic that many people with disabilities have fallen through the cracks of governments’ planning, and our own responses, because of intersectional forms of discrimination. Persons with disabilities need to build on your cooperation and interactions with other minority and disadvantaged people so that you can speak with one voice in advocating for a disability sector of equality.
4. The importance of meaningful participation: A major gap in government actions worldwide in 2020 was the lack of systematic involvement of persons with disabilities through their representative organizations. The motto of disability movement, ‘nothing about us without us’, [Oliver 1992[was not in action at the onset of this pandemic, for the most part, in national and county governments and globally. You need to advocate for better involvement. You need also to strengthen your own movement so your members can be strong, sustainable, and united in their diversity and be fully involved in all decisions that affect the lives of all persons with disabilities.
5. Preparedness: obviously, COVID-19 crisis planning did not include persons with disabilities. Persons with disabilities need to be included in resilience planning at the national and county levels.
6. Looking ahead: Be aware of the global changes in the economy, and in society. All these changes will affect persons with disabilities, your members and organizations o persons with disabilities globally. We should be part of the change, so a new, more inclusive world evolves from COVID-19.
all in all, I believe top policy makers should sit down with disability representative organizations, work with them to objectively identify the problems and test the solutions, and co-design the improvements that are needed for this Albinism programme.
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The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.
Australian Chief Minister Award winner
“Excellence of making inclusion happen”