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COMING OUT OF THE SHADOWS

Is a short documentary on people living with Albinism in Fiji

Produced By Christine Nestel (Director-Producer) and Anna Whitfeld (Associate Producer)

Fiji has one of the highest rates of people with albinism in the world so why, until now, have they been living in the shadows? This short documentary gives you an insight of this genetic condition.

ALBINISM AWARENESS DAY 2018

2018 FIJI CELEBRATION

Goals and objectives

In collaboration with the United Nations Office for the High Commissioner on Human Rights, the Fiji Albinism Project organized the 2018 IAAD Fiji Celebration at the Ratu Sukuna Park in Suva, Fiji’s main capital city. With the theme; Shining our Light to the World, the aim of this year’s celebration was to raise awareness on the discrimination, isolation and stigmatization faced by persons with albinism in their own families and communities in their everyday life. The main key objectives were to secure support from Government and International agencies to enhance issues concerning persons with albinism through the organizing of a public forum, media awareness campaign, health clinics and other activities that will help raise the self esteem of persons with albinism and promote their equal participation in their society. society.

Funding

Funding was provided by United Nations Office of the High Commissioner on Human Rights for the Pacific. Donations in kind was provided by the civil society organizations such as the Fiji Cancer Society, Fiji Women’s Crisis Centre and Business Houses including Colgate Palmolive and Flour Mills of Fiji.

Participation

The IAAD Celebration saw the participation of more than fifty persons with albinism and their families and friends including representatives from Government and Civil Society Organizations.

CHIEF GUEST AND GUEST SPEAKERS

The Fiji Albinism Project and persons with albinism were very honored to have the Attorney General of Fiji and Minister for Justice Mr. Aiyaz Sayed-Khaiyum who graced the event with his presence and delivered a powerful address calling on all Fijians to stop discrimination against persons with albinism. “The idea of this day is to create awareness and ensure that just because a person has albinism, it doesn’t mean we discriminate against them and we need to recognize that persons with albinism have specific requirements, they are vulnerable to the sun and with albinism, their eyes are also affected .” The Honorable Attorney General further elaborated that; “We need to create the ability for people to understand and humanize our fellow Fijian, to see persons with albinism in our community as human beings” We need to give respect and dignity even though they may look differently from us.” The Honorable Attorney General acknowledge the support of the United Nations Office of the High Commission on Human Rights that had enabled persons with albinism to participate fully at this celebration.

The contribution and participation of the Representative of the United Nations High Commission for the Pacific was highly commendable.

The Voice of Persons with Albinism for this day was Ms Sabina Moce, a 16 year old young student of St Joseph’s Secondary School who spoke highly about her talents and her achievements despite the struggles she encounters; her achievements was not tokenistic because of her albinism but because of her perseverance. She informed the crowd that she is the same as anyone else despite being a person with albinism. “I may be different, but I am also the same, I am still Fijian, I am still a student and I am beautiful”. Her powerful message to persons with albinism is that they can achieve anything if they put their mind to, “your albinism is a gift from God, acknowledge it and take good care of yourselves”.

ACITIVITIES

In close collaboration with the Twomey Dermatology Hospital, Pacific Eye Institute, Oncology Unit of the Ministry of Health and Medical Services, the Ministry of Health, Department of Social Welfare, the Fiji Military Forces, Fiji Police Force and partner civil society organizations such as Reproductive Family Health Association of Fiji and Fiji Cancer Society activities were organized for persons with albinism.

These activities included eye screening enlisting, skin clinics and women’s health checks. Entertainment was provided by the Fiji Police Band featuring students from Fiji School for the Blind and other persons with albinism.

The Ministry of Education endorsed the release of all students with albinism from schools within the Suva – Nausori Corridor to participate in the celebration. Transportation of these students from their respective schools was provided for by the Spinal Injury Association of Fiji

The Department of Social Welfare provided information and support in signing up of persons with albinism for benefit schemes and disability pensions.

The Fiji Military Forces provided a team of Physical Training Instructors to facilitate games for children and this activity was enjoyed by many children with albinism and their peers.

IN THE MEDIA

Articles and news reports.

Survey conducted in Fiji 2007

http://www.fijitimes.com/story.aspx?id=168530

Artarmon Gazette 2012 article about Margot and Lucia’s work in Fiji on page 8

http://www.artarmonprogress.org.au/Gazette/issues/Gazette201205_Web.pdf

2 of us article published in the Sydney Morning Herald’s Good Weekend May 19th 2012

Whitfeld Romani stor21FB2E1.pdf