Albinism Awareness session

From the 16th to 18th September 2020, Making More Health in collaboration with Golden Age Albinism Support Program and Positive Exposure- Kenya ran a 3-day ‘Albinism Awareness Session’ to raise awareness on albinism. Triggered by a rise in attacks against Persons with Albinism  during the COVID-19 times, the sessions provided an open forum to share experiences, ask questions, and seek clarity on myths within the community. At the height of the pandemic was an increased number of cases where Persons with Albinism  have been tagged as agents/carriers of the novel virus. This is just one of the many myths that have caused stigmatization and exclusion of Persons with Albinism  in society.

The Albinism Awareness session used a Training of Trainers (ToT) approach where key community influencers particularly educators, health care providers, and community administrators were engaged in an informative discussion on albinism. The training session was mainly guided by the Albinism Knowledge Package available here. It sparked an interesting conversation based on the experiences of the participants with Persons with Albinism . A police officer shared that he was involved in the rescue of a child with albinism. Had it not been for the rescue mission, the child would have been sold for traditional rituals.  ‘It is common for a new born with albinism to be abandoned by their parents,' he adds. Teachers admitted that they were unaware of the reasonable accommodation that can be provided to improve education for students with albinism, health care providers on the other hand were unsure of how to interact with patients with albinism, community administrators too were challenged in explaining the inheritance of albinism. Utilizing a bilingual approach (Swahili and English) chaired by facilitators with albinism, and attendees with albinism made the discussion even more relatable to the audience.

To abide by the COVID regulations, participants were invited in groups of 15 to physically participate in the Making More Health house, while the facilitators joined via Zoom. Within each group, at least three of the participants already had an encounter with Persons with Albinism as either family members, neighbors, patients, students, or even themselves.

‘With increased awareness, we promote acceptance, improve the self-esteem and stimulate advocacy for Persons with Albinism ‘ – Jane Waithera, Founder, Positive Exposure- Kenya.

There was an undeniable interest from the participants to learn more about albinism and to improve the lives of Persons with Albinism. With a better understanding of albinism, participants developed a personal action plan detailing simple activities that they will do to create an inclusive society for Persons with Albinism. In total, approximately 45 key influencers were educated on albinism; each making a personal commitment to raise awareness on albinism within their communities. To achieve this the participants were equipped with copies of the Albinism Knowledge Package. A public health officer, for instance, committed to discussing albinism in public health dialogue day for Universal Health Coverage. A village elder committed to sharing their newly acquired information with her husband who had abandoned his child with albinism. All participants agreed to abolish the name 'albinos' and address Persons with Albinism respectfully. Each training ended with a safety session to sensitize the audience on traffic, home, and neighborhood safety.

With this training, Making More Health was able to gain a network of supporters within the education, health, and administration who will serve as community ambassadors to advocate for reasonable accommodation for Persons with Albinism and inclusivity of Persons with Albinism in the community