September marks Albinism Awareness Month in South Africa and Tukkievaria caught up with one of our researchers for some valuable insights into the topic.

Sabeeha Majid, a researcher at the Disability Rights Unit at UP’s Centre for Human Rights, outlines why albinism awareness is key to combatting the “othering” of people with albinism in South Africa.

South Africa’s transition from apartheid to democracy can be characterised by various milestones, notably, the adoption of a supreme Constitution. In its preamble, the Constitution of the Republic of South Africa (1996) makes strong reference to the injustices of the past and states that the Constitution serves as a bridge between our troubled past and a future in which the human rights of all will be respected, protected and promoted.

Despite the constitutional promise of equality and human dignity, those with albinism continue to face discrimination, which hinders their equal and effective participation in society, and impedes their access to a number of socio-economic rights, including education, healthcare, housing and employment. In 2019, Ikponwosa Ero, the then United Nations Independent Expert on the Enjoyment of Human Rights by Persons with Albinism, expressed concern at the discrimination of people with albinism in South Africa.

In order to eliminate this kind of discrimination, it is crucial to identify its root cause. The primary cause may be identified as a general lack of education and awareness of the condition, which is characterised by a lack of pigmentation in the hair, skin and eyes. Yet in many cultures, mainly traditional African cultures, albinism is viewed as a curse. Common myths and misconceptions include the following: that the body parts of people with albinism can bring wealth, the mothers of children with albinism are being punished for sins they have committed, and that those with albinism are ghosts or supernatural beings with superpowers. These ideas have resulted in the “othering” of people with albinism within their families, communities and society at large.

People with albinism are also “othered” within the disability rights community. The UN Convention on the Rights of Persons with Disabilities (UNCRPD) states that “persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”. According to social and human rights models of disability, disability does not exist as a result of an individual’s impairment, but rather, exists as a result of barriers imposed by society. Based on the UNCRPD definition of disability, those with albinism are to be considered as people with disabilities because the lack of melanin in their skin makes them susceptible to skin cancer. Furthermore, people with albinism may experience varying types of visual impairment. Moreover, the UN Committee on the Rights of Persons with Disabilities accepted in X v United Republic of Tanzania, and in numerous concluding observations, that albinism is a type of disability. Yet despite albinism being considered a disability by international law standards, the disability rights community is fragmented on whether or not people with albinism should be included within the disability rights community and movement.

For as long as misconceptions and myths are passed down from one generation to the next, people with albinism will continue to face discrimination. The elimination of discriminatory practices can only be achieved through multisectoral initiatives aimed at educating people.