September International Albinism month


01 December 2020

Transition from moral and ethical issues facing persons living with albinism to social and economic contribution in the modern South Africa.

In the new dispensation of government a lot has been done in terms of spreading awareness regarding persons living with albinism but little has been done to integrate them in the space of the economy. The United Nations Convention has officially declared albinism as a disability and drafted a document called L25.

Resolutions were adopted by the Human Rights Council on the 13th of June 2013 and one of the resolutions that was taken was that: “The state should take effective measures to eliminate any type of discrimination against persons living with albinism and to accelerate education and public awareness raising activities”.

Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair, and/or eyes. Albinism occurs in all racial and ethnic groups throughout the world. Most children with albinism are born to parents who have normal hair and eye color for their ethnic backgrounds according to National Organization for Albinism and Hypopigmentation (NOAH) in the Republic of Canada.

The physically appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstitions which foster their marginalization and social exclusion. This leads to various forms of stigma and discrimination. Common myths that are associated with persons living with albinism is that their body parts make potent charms that makes people rich and successful and that drinking the blood of persons with albinism produces magical powers. This is a trending phenomenon in certain African countries such as Malawi, Burundi, Tanzania and Madagascar. This phenomenon is widely documented to have contributed detrimentally to the killing and dismembering of persons with albinism according to CNN television channel on 7th June 2016.

September 2016 SABC reported the tragic passing of Thandazile Mpunzi, a 20 year old female living with albinism in Kwa Zulu Natal who was brutally murdered and assassinated and her body parts were found in a shallow grave. The Albinism Society of South Africa (ASSA), a Non-Governmental Organization representing all persons with albinism in South Africa joined hands in the struggle against the killings and mutilations of persons with albinism as they have a right to safety and protection according to one of the UN resolutions.

Since 1994 the state has established Non-Governmental Organizations and engaged on National advocacy programs for awareness raising to combat social exclusion such as discrimination and marginalization. Yes, it is an excellent initiative and we are part of a diverse economy but the central question is: Are we as persons living with albinism contributing positively towards National Democratic Revolution? Or National Development Plan 2030? Yes, we are well represented in state institutions but are we functional, productive and making an impact? Is the education system inclusive enough to accommodate learners with albinism? Is higher education accessible and diverse enough to deal with silent marginalization? Are persons living with albinism employed by virtue of merit or is it for the sake of compliance with the Employment Equity Act of 1998?

Education white paper 6 (2001), a policy document of special needs education has proven to be ambiguous, lack in clarity and detail on how best to serve not only learners with albinism but also of other cross disabilities. It contains of “vague” and “broad” policies without a clear framework according to many researchers in the field of inclusive education. Kefuwe April, a Gr R educator in one of the rural schools in Alexandra in Johannesburg emphasized the need for department of education to engage in the issue of curriculum modification, professional development within a curriculum context as a perfect inclusive pedagogy to cater for the needs of those learners.

Persons living with albinism employed in government departments complained of being appointed in lower-level positions because of stigma and stereotypes in the workplace. Because of the fact that people are ignorant pertaining to issues facing persons living with albinism and a sense of fear as well as lack confidence in them to be deployed in strategic positions in order to influence policies and play a central role decision making and realizing a mission and vision of every department. The government has instead appointed them in lower positions such as administration and Human Resource despite boasting necessary qualifications and experience required for those higher positions. They have further reported how they are belittled and underestimated in a sense that their work is always double-checked upon completion and their supervisors cannot delegate tasks to them because of lack of trust.

We are slowly shifting from the paradigm of educating people about albinism because it has become a common subject in the space of media, communities and other places. We ought to have a clear framework on how best to include and equally allow persons living with albinism to actively participate in a diverse economy. By doing so, we are directly inspiring confidence in the mainstream society and combating social ills such as silent marginalization, social and economic exclusion. By allowing persons with albinism participation in nation building we would be sending a strong message that we are capable, able and productive, the only difference is the color of the skin.

Kamohelo Rodney Teele is a National Spokesperson of the South African Deaf Youth Projects (SADYP) a human rights and disability activist. Furthermore he holds a Bachelor of Honours in Inclusive Education from the University of Witwatersrand.