SUVA / GENEVA (7 December 2017) – It is time for Fiji to step up efforts to tackle the “invisibility” of people with albinism and ensure they enjoy their full human rights, a United Nations human rights expert has concluded, after an official visit to the country which has one of the highest estimated rates of albinism in the world.
The UN Independent Expert on the enjoyment of human rights by persons with albinism, Ikponwosa Ero, said in a statement that Fiji had the ideal opportunity to put the needs of people with albinism high on the national agenda, having ratified the UN Convention on the rights of persons with disabilities in June, and with a draft bill on people with disabilities currently going through Parliament.
“The discussion of issues relating to people with albinism in Fiji is relatively new,” said Ms. Ero. “I am convinced that my visit has sparked a process of introspection and realization of the need to bring this group within Fijian society out of the shadows and private suffering and into the national consciousness.”
Misconceptions and misunderstandings about people with albinism, alongside deeply entrenched traditional and customary beliefs, could explain the persistence of discrimination, stigmatization and isolation of people with albinism in Fiji, the expert said. But discrimination could also result from the perception that people with albinism should not be treated differently from other people, she added.
“The prevailing conception of ‘sameness’ often fails to recognize that people with albinism often require specific measures and ‘reasonable accommodation’, to achieve substantive equality with others,” said Ms. Ero.
“There is a need to strengthen awareness through implementation of wide-scale outreach programmes on albinism, as well as through training of public officials, law enforcement officers, members of the judiciary, teachers, medical personnel and political representatives at all levels.”
The absence of data on albinism and disaggregated databases perpetuates people's invisibility and exacerbates their vulnerability, she said, urging the Government to launch a systematic collection of information via government agencies, academic institutions and civil society.
“A comprehensive nationwide survey on discrimination generally needs to be conducted in Fiji, to address the root causes of discrimination and stigma and provide a platform for the views and experiences of persons with albinism and their families to be heard and recorded,” she added.
The Independent Expert highlighted concerns over the significant lack of specialized medical services and personnel to ensure that the skin cancer risk and vision impairment emanating from albinism are spotted and treated early. She called for training of health staff and focal points within existing healthcare centres, to remedy the situation.
Ms. Ero expressed particular concern over the absence of government-led programmes and investment initiatives to ensure that people with albinism could access vital supplies such as sunscreen, hats, protective clothing, liquid nitrogen for skin treatment, glasses and monoculars.
“I strongly encourage the Government of Fiji to prioritize sustainable funding for all protective and adaptive material and treatment equipment, as well as for all necessary interventions, to safeguard the principle of 'reasonable accommodation' in all areas affecting people with albinism, including at home, in school and in the workplace,” she said.
“I urge the Government to include sunscreen on the list of essential medicines and to consider launching the local production of sunscreen, to achieve affordability and availability.”
The Independent Expert also stressed the need for active involvement of people with albinism in all matters affecting them, including through the establishment of registered civil society organizations and self-help groups.
During her mission to Fiji, Ms. Ero met high-level officials, civil society organizations and people with albinism. She visited the capital Suva and also travelled to the districts of Nadi and Rakiraki.
The Independent Expert, appointed by the UN Human Rights Council, investigates all rights violations against people with albinism in different countries. She also identifies and promotes good practices, and combats the stereotypes, prejudices and harmful practices which lead to human rights abuses.
She will present a full report and recommendations to Fiji at the Human Rights Council in March 2019.
Ms. Ikponwosa Ero (Nigeria) was designated in June 2015 as the first UN Independent Expert on the enjoyment of human rights by persons with albinism by the Human Rights Council. Inspired by her experiences as a person with albinism, Ms. Ero has, for more than a decade, been actively engaged in the research, policy development and practice of human rights concerning persons with albinism. As international advocacy and legal officer of Under the Same Sun, an NGO with a focus on albinism, she has participated in multiple activities and panels at the UN in Geneva and New York. She has extensive experience in research, policy development and advocacy in the field of albinism. She is the author of numerous papers and articles on the issue, including with regards to the categorization of persons with albinism in the international human rights system.
The Independent Experts are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council’s independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures’ experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity.
Check out our special website: People with albinism: not ghosts, but human beings.
Read the Independent Expert’s first report to the UN Human Rights Council.
UN Human Rights country page: Fiji
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