Voices from the Shadows: Albinism Awareness in Samoa

How the EU-UN Spotlight Initiative is helping amplify the voices of marginalized societies such as people living with albinism

by Reverend Siaosi Salesulu, Chairman of the Clarence Sebastian Foundation for albinism, at the launch of the Advocacy Plan on how to deal appropriately and sensitively with females with albinism in communities and schools in Samoa.

Reverend Siaosi Salesulu (left) of the Clarence Sebastian Foundation with representatives from other Civil Society Organisations in Samoa that received grants from the UNDP Spotlight Initiative component with UNDP Assistant Resident Representative — Governance, Christina Mualia (3rd from right) at an orientation session for the successful applicants to design and deliver programmes that support civil society advocacy, prevention and response to the elimination of violence against women and girls. Photo: Spotlight Initiative/A. Samasoni

The Clarence Sebastian Foundation (CSF) was registered in Samoa on July 02 2012 as a Charitable Trust.

The Clarence Sebastian Foundation is an organisation dedicated to assisting young people with albinism living in Samoa. The organisation relies solely on grants, donations, fundraising events and the support of the community for its sustainability.

The Clarence Sebastian Foundation is the first of its kind to be established in Samoa. There are no other organisations in Samoa that specifically deal with the needs of people with albinism. There are other organisations from abroad who work with people who have albinism in the Pacific but The Clarence Sebastian Foundation (based in Samoa) is the only organisation for Samoans with albinism.

I have been the Chairman of the Clarence Sebastian foundation since its establishment in 2012.

Under the Spotlight Initiative, CSF was able to implement a programme which had as its Primary Objective 2, the promotion of a guideline (text) to help organisations deal (appropriately and sensitively) with females with albinism in communities and schools.

Today we are launching this Advocacy Plan (guideline/text) drafted for organisations to deal (appropriately and sensitively) with females with albinism in communities and schools in Samoa.

I am buoyed and confident by the great spiritual message by Reverend Maauga. The speeches by Faaofonuu Junior Leota — founder of CSF — and Hazel were powerful and moving. However, I can only caution that with the “hoopla” over, we are now tasked with working hard to build on a spectacular start.

The Clarence Sebastian Foundation is the only operating Centre of its kind for Albinos to the east of New Zealand. The Foundation said there are about 300 people with albinism in Samoa. Photo: Clarence Sebastian Foundation

The title of the programme — Voices from the Shadows — indicate how young people with albinism, especially females, feel in Samoa. They stay in the “shadows” because the sun is injurious to their skin. But they also stay in the shadows because they are the subject of ridicule and scorn. People in Samoa are generally ignorant of the causes of albinism. Furthermore, the unfounded information and negative comments further fuel hearsay and negativity towards these young people. They are classed as Palagi or Caucasians or worse, they are listed as cursed. This is hurtful for the young people and their families who grapple with the issues and challenges that albinism bring for them. They have special needs and these needs should be respected and protected.

Promotional material for Voices from the Shadows.

Louisa Apelu, Project Coordinator for the UNDP component of the Spotlight Initiative, underlined the focus of the Initiative which is to put a spotlight on the foundations and causative factors leading to violence against ALL females. The Spotlight Initiatives strives to ensure that all women and girls of all diversities live a life free from violence.

The launch also coincided with the launch of albinism awareness in Samoa. We promote advocacy for those individuals with albinism. No more “slinking in the shadows” and marginalizing those who are different. It’s time for community responsiveness.

The shadows gives us solace and respite from the sun but our collective VOICE is now to be heard even from the shadows.

Voices from the Shadows is funded by the Spotlight Initiative through UNDP. The Spotlight Initiative is a joint United Nations and European Union programme to end all forms of violence against all women and girls, targeting in particular women and girls who are left furthest behind and facing intersecting forms of discrimination.

Under the UNDP component of the Spotlight Initiative as well, the Clarence Sebastian Foundation also held an advocacy campaign and alliance with the Disability Sector to develop an action plan to address discrimination and stigmatization of women and children living with albinism.

ENDS