Poet and musician Ruth Mahogany, in collaboration with the Albinism Association of Nigeria (AAN), has launched a 21-day social media campaign aimed at creating awareness and affirming the dignity of persons with albinism.
Launched from February 24 to March 16, the two-fold campaign includes a medical outreach programme targeted at providing medical check-ups and assistive materials to persons with albinism, while deploying the poetic art to sensitize the Nigerian public on albinism and debunk myths around it.
The campaign, funded by Fondation Pierre Fabre, consists of daily posts featuring dignity-affirming stories of individuals with albinism, alongside the upload of a spoken word video, ‘White Fire,’ which raises awareness about albinism.
The five-minute video created by Mahogany’s Big Feline Agency in collaboration with AAN, defines albinism as “a genetic condition that affects the body’s production of melanin, the pigment responsible for skin, hair and eye colour. A child with albinism is born only when both parents carry the albinism gene, even if they do not show visible signs of albinism.”
It centers two persons with albinism, Deborah Obanor and Mc Wyte, narrating their lived experiences – from verbal assault of being addressed as ‘Oyinbo Pepper’, ‘Afin’, or ‘Anyali’ to being bullied, discriminated against or ignored. Perhaps the most heartbreaking is their unintentional exclusion with something as simple as a whiteboard, which strains the eyes of persons with albinism, causing them to struggle five times as hard as their classmates to keep up at school and at work.
These subtle outward forms of indignity, alongside the internal and invisible struggles like low self-esteem, the undermining of the independence of persons with albinism owing to overprotection or pity from family members, are some of the narratives the campaign aims to change.
On why the association chose the arts, and poetry in particular, to raise awareness on albinism this year, the Executive Director of AAN, Dr Bisi Bamishe, said, besides the power of the arts to touch hearts and shift perceptions in ways that a conventional advocacy could never do, the association wants to celebrate the talents, resilience and humanity of persons with albinism.
“Using an art form like music, spoken word, or visual arts makes the message relatable, memorable and engaging in ways that facts and statistics alone cannot achieve.” Partnering with an artiste, she further added, makes it easier to reach the younger people, through creativity, emotion and storytelling.
Speaking to the LEADERSHIP, Mahogany, the Executive Director of Big Feline Agency, said the idea for ‘White Fire’ and working with AAN is rooted in the core recurring themes in her work, which are: strength amid weakness and resilience gained through overcoming challenges.
“I am deeply inspired by persons with albinism. I wanted a collaboration that will showcase the heights of excellence and beauty while reflecting their authentic experiences. Because being different doesn’t affect the heights of greatness a person can achieve.”
To prepare for the video, Obano, Mc Wyte and several other persons with albinism were coached in the spoken word techniques, followed by a professional studio session and a video shoot.
“There is a dignity in co-creating something beautiful in a loving and respectful environment,” said Mahogany.
Obanor picked up on this, affirming that she hadn’t felt undignified in any way during the filming process.
“I learnt a lot in the process of creating the video. Regardless of my being a person with albinism, I am a creative. I never felt like I wasn’t given equal opportunity in terms of suggesting ideas or performing my ideas.”
Obanor advocates for a change that views persons with albinism not as people with disabilities or lack of independence, but to see them as different-abled people challenged with a “different way to grow and do better.”
The Big Feline Agency and AAN 21 Days social media campaign is funded by Fondation Pierre Fabre.
