Tryphina Nhlapo, Executive Director Melokuhle Foundation:

Speaking on Persons With Albinism

Celebration of human rights doesn’t apply to Persons With Albinism (PWA) in South Africa despite the progressive constitutional democratic safeguards and the numerous human rights norms and standards subscribed by the country. While we are in a free and democratic country, PWD are not free. “It is painful to live in their skin because people are making a mockery out of it”.

It has always been made known for centuries and decades that PWD don’t die but disappear in thin air. The question is how many lives have been taken away because of this myth, that persons with albinism disappear and not by choice, but actually been mutilated for body parts? It is difficult to make peace with traditional healers because PWD live in fear of permanent disappearance.

The right to culture and religion is protected in the constitution[1]. However, culture and religion which infringe upon the constitution values is unconstitutional. The right to live is sacrosanct according to the constitution, including international and regional human rights treatise that South Africa acceded to. But PWA live in unwelcoming communities, and nothing is done to protect their bodies from the trauma of mutilation. They are in constant hiding, face prejudice from law enforcement who don’t know what albinism is and make access to justice for them impossible. They face double victimisation, stigma, inhumane and degrading treatment daily in the country in  the face of state institutions. It is not surprising that they are a prey to criminals that perpetrate heinous crimes on broad daylight. They are sexually abused, robbed of their valuables electronic devices like cell phones, laptops get taken from them in public places. Their lives in nothing but constant pain and full of regrets for living in this skin. 

It is scary to be in a country which is supposed to be free, yet  we don’t enjoy the freedom that is set to be there, it is not for everyone, we must be clear about that, it will never be for everyone, until such time we not only see and read the National Action Plan on Women Peace and Security, but we need to implement it.

It is sad that medical doctors are also ignorant about albinism. One could be asked how many years they had albinism. This ignorance does not exclude white people, particularly the Afrikaner people. For some years every time meeting an Afrikaner person will say as jy sien an albino jy moet spoeg. PWA live with that for years and wonder what’s the problem with our society. In some provinces there’s still a debate whether albinism is a disability or not. A municipality in Mpumalanga has made progress in deciding to remove albinism on the disability level to be a stand-alone issue.

Albinism is a burning issue that should be taught to children at young age. We cannot be raising a generation of people who are still going to believe that albinism is a curse. PWA are not certain whether they will die because of  God’s plan or because a person believes they make muti.

It is amazing how the government spread public education on HIV/AIDs but makes no public education about albinism. Children born with albinism are at risk of suffering brutal death as babies or grown adult unprotected from facing mutilation. This is because the government, communities’, national institutions are not ready to accept this condition. Albinism is a condition and it’s going nowhere.

 

The government must take concrete steps to transforms communities, particularly in the African traditional cultures, traditional healing & herbal sector, parliament, education institutions, law enforcement, courts among others. The International Albinism Awareness Day is meaningless where PWA live in fear, unwelcoming communities, prejudice society, denied access to justice and insensitive law enforcement.

 

The government must undertake the following actions to end this untold and forgotten burning issue affecting PWA in local, provincial and national levels:

 

  1. Support the Commission on Culture Religion Linguistic Communities to collaborate with CSOs, CBOs with a view of hosting provincial dialogues for purpose of education and documentation of human rights violations of PWA rights.
  2. Conduct public education on albinism, using social media to reach all stakeholders, including diverse communities, traditional leaders, faith-based organisations, traditional healers, private sector, media practioners, journalists, trade unions, CSOs, CBOs, HRDs, national institutions, state departments.
  3. Conduct capacity building and sensitisation programme for law enforcement, including police stations, courts, health intuitions- clinics, hospitals.
  4. Promote incorporate Albinism in the School Education Curriculum ensuring children are educated about albinism at early stage.
  5. Conduct a national dialogue for building a culture that respect human rights for all including PWA, ensuring participation of key government officials, traditional healers to find long lasting solution together to end the scourge, stigma and the myth that PWA is a lucky charm, protect them against their perpetrators with a strong legislation.

[1] Section 30: Language & Culture: Everyone has the right to use the language and to participate in the cultural life of their choice, but no

one exercising these rights may do so in a manner inconsistent with any provision of the Bill of Rights. Section 31 (1) Persons belonging

to a cultural, religious, or linguistic community may not be denied the right, with other members of that community ­

  1. to enjoy their culture, practise their religion and use their language; and
  2. to form, join and maintain cultural, religious and linguistic associations and other organs of civil society.

(2). The rights in subsection (1) may not be exercised in a manner inconsistent with any provision of the Bill of Rights.

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