Albinism Umbrella – From spatial mapping to changing the lives of PWA in Eastern Uganda 

Is Albinism a disability or not?  Is a movement created to champion issues related to persons with Albinism a movement?  Whether to be classified as a disability or a movement or not created the agency for movement building.  In 2014, in recognition the fact that there were gaps in the capacity of the existing albinism organization there was a national outcry for Persons with Albinism (PWA) to have a collective voice in order to advocate for their plight in Uganda.  As a result, Albinism Umbrella (AU) was formed as a joint voice for all PWA organizations so as to provide a lasting impact on PWA in Uganda. During this time, PWA were facing multiple challenges including rejection and living in extreme poverty, many of them were in hiding and needed a sense of belonging. Even with inclusion into the disability movement, many of them were not fully accepted on grounds that people with Albinism were not “fully disabled” and besides people with albinism were reluctant to have further negative connotation of disability added onto them. 

AU through the Spatial Mapping and Profiling of PWA in Uganda project, conducted a spatial mapping exercise to create a database of all PWA and the organizations serving them as well as determine the perceptions of PWA towards communities they live in, and vice versa perceptions of the community of them in 10 selected districts in Eastern Uganda. The region was selected as it was identified as having more PWA than any other part of the country. The study was a cross sectional study that utilized digital tools to map locations and GPS in order to create a database of PWA in the region.  The exercise also identified the nearest service providers to PWA such as schools, health facilities, trading centers or any organization dealing with PWA and their issues. 

The study found that many PWA lived in extreme corners of the district, some having sought refuge in the mountains to secure their safety.  More than two thirds did not know the cause of albinism or the risk of skin cancer, 75% of PWA have eye problems and of these 75% had never gone for any eye checkup. On a positive note, 87% knew of the harmful effect of the sun on their skin and health.  The study also found that the perception of the community and their leaders towards PWA was grossly negative and marred with myths and misconceptions about albinism. 

“This is my first time to attend and talk for myself, it feels so good to be part of my brothers and sister” exclaimed Diana Nakibuuka who attended a session at Albinism Umbrella 

The project and database currently provides a baseline against which other PWA interventions are bench marked and results shared across government agencies. As a result, Equal Opportunity Commission, Uganda Human Rights Commission and the UN Human Rights have come forward to support the plight of PWA. Parliament walks have also been made to raise public awareness of the issue of albinism since it emerged that this was the major hindrance to PWA participation. As a result, some of the beneficiaries were able to participate in national activities including representation in the Indaba. While the negative perceptions may still exist, there has been a considerable improvement in the acceptance of PWA. 

“I thought God put only the two of us in the world to suffer, I had never seen anyone who looks like us- me and my brother. Thanks Albinism Umbrella for coming to us” said Scoria who lives with her grandparents.