Working with Government to advance the Rights of People Living with Albinism

The United Nations Office of the High Commissioner for Human Rights (OHCHR) Deputy Country Representative Nicole Bjerler has reiterated the call by the Independent Expert on the enjoyment of human rights by persons with albinism, Ikponwosa Ero for all stakeholders to support persons with albinism in their quest for the enjoyment of their human rights.

Nicole made the call during the commemoration of the International Albinism Awareness Day (IAAD) on 13 June 2018 at Maluku Administration grounds in Mbale town in Eastern Uganda under the theme: “Shining Our Light to the World!”

She further reiterated OHCHR’s commitment to working with Government and its institutions in fulfilling Article 1 of the Universal Declaration of Human Rights (UDHR) on human equality, dignity and non-discrimination by assisting vulnerable and least advantaged people including People Living with Albinism and to raise awareness about their human rights.

To realise this, Nicole underscored the significance of the work of all professionals, in particular medical personnel in providing specialized attention to the specific needs of people living with albinism. “They are discriminated against in accessing education and healthcare services, in achieving and retaining livelihood opportunities. Children with albinism are particularly vulnerable due to myths and erroneous beliefs.”

“There is a strong need to demystify albinism in the public consciousness, and to undertake awareness-raising and education initiatives. Our friends living with albinism are just like us, and are entitled to live in dignity and respect of their human rights, just like us.” Nicole noted.

The Independent expert on the enjoyment of human rights of persons with albinism Ero Ikponwosa in her message on the occasion of commemorating International Albinism Awareness Day highlighted the importance of the day, as a celebration of the remarkable contributions of persons with albinism, who have shattered stereotypes and myths. “Indeed, it is still often believed that persons with albinism are unable to learn,” she said, adding that, “This prejudice illustrates the particular discrimination they face regarding access to education, including persistent bullying and the absence of reasonable accommodation for the vision impairment that is often part of albinism”.

In Uganda, the day was observed on 13 June in Mbale. The speaker of the Parliament of Uganda Rt. Honorable Rebecca Kadaga was the Chief Guest.  The Speaker demanded that the Ministry of Education and Sports prioritises the development of guidelines on education, provision of sunscreen, spectacles and hats for people living with albinism by including it in the 2019/2020 Financial Year budget. She emphasized the fact that the government of Uganda could not fail to provide such services to the persons living with albinism given their small minimal number in the country.

She further revealed that the Ministry of Gender, Labour and Social Development had failed to expedite the process of enacting the law on People with Disabilities (PWDsThe celebrations were also graced by the presence of Sylvia Ntambi Muwebwa, the Chairperson Equal Opportunities Commission. and commission members – Zamina Malole and Wafula Sirabo Patrobas. In her speech, Muwebwa applauded the Speaker of Parliament for being progressive in encouraging the Parliamentary Commission to employ a person with albinism.  She implored all stakeholders to strive towards changing conditions for people living with albinism, “through promoting collaboration and making strategic partnerships with all stakeholders.” Said Muwebwa.

The Executive Director for Albinism Umbrella Organization in Uganda, Olive Namutebi, appealed for support towards a planned establishment of a factory to locally produced sunscreen. Namutebi also called for the expeditious enactment of laws protecting children with albinism in schools so as to encourage them to study. “Without education, people living with albinism are nothing,” said Namutebi.