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SA: Bandile Masuk: Address by Gauteng Health MEC, on the occasion of the Kwatsaduza Albinism Society Initiative’s 3rd Annual Albinism Candlelight Day, Kwa-Thema Hall, Springs (13/06/2019)

13th June 2019

MEC Thuliswa Nkabinde;
Members of the Ekurhuleni Mayoral office;
Officials of the various Gauteng Provincial Government;
Members of the South African Police Services;
Members of the Ekurhuleni Metro Police Department;
Disability organisations;
Traditional leaders;
Community leaders;
Special guests;
Ladies and gentlemen;

The month of June remains one of the most significant months for South Africa as it is a stark reminder of the atrocities that make up the history of our country, as well as the fighting spirit and revolutionary commitment to justice, freedom and equality as displayed by the youth of 1976.

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It is indeed our revolutionary task as leaders and members of society to continuously reflect on the events of our past in a way that shapes our future to the effect that we are enabled to define our opportunities and responsibilities in the building of a National Democratic Society that serves the interests of all South Africans irrespective of their race, gender or class position.

More significantly, the 13th June marks the United Nations International Albinism Awareness day under the theme "Still Standing Strong".  As per the declaration of the United Nations, we should use this day to;

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‘…recognize, celebrate and stand in solidarity with persons with albinism around the world, and to support their cause – from their accomplishments and positive practices to the promotion and protection of their human rights. Persons with albinism have faced, and continue to face, ongoing hurdles and challenges that seriously undermine their enjoyment of human rights. From stigma and discrimination, to barriers in health, education, and invisibility in social and political arenas.’ 

Despite these challenges, People living with Albinism are ‘Still Standing Strong!’

Today also marks exactly two weeks in office as the MEC of Health in Gauteng. I am humbled to be entrusted with the epic task of turning around the public health care system in our province. As a department we have hit the ground running and have in place a 100 Days programme of action that has at its core improving the morale of all health workers and ensuring that all residents of Gauteng have access to quality health services. It is worth noting that included in our 100 Days programme is an acknowledgement of the importance of prioritising issues affecting people living with albinism.

The Kwatsaduza Albinism Society Initiative properly designates the region of Ekhuruleni as the location where struggle stalwart Mam Bertha Qxowa lived and led the struggle against apartheid in the 1950s. Ekurhuleni would also be the location where the ANC establishment of structures in the 1990s would be most prominent through the work of Mama Bertha;  Greg Malebo, Diza Puthini, Cleopas Nsibande and other activists. Ekurhuleni is etched in the South African archive as a place of women’s protest against apartheid and its suppression.

Specifically, todays gathering commemorates the effort of the Kwatsaduza community in furthering the resolutions of the 2013 Ekurhuleni declaration on the rights of persons with albinism.  The Kwatsaduza Albinism Society Initiative should be duly applauded as a progressive initiative towards active citizenship and positive self-representation. 

The 2013 declaration gave sufficient attention to the humanity of persons with albinism and their in-viable, and inalienable rights in the South African constitution, and called on us to recognise the humanity of people living with albinism as people with dreams, aspirations for life, individual autonomy and deserving of safety in society. The declaration expressed that children and adults with albinism also have the right to live in our societies freely without discrimination against where they could access creches, schools, playgrounds, and areas of recreation.  

Six years after this declaration, the challenge of socialising people to respect Section 9 of the Constitution and its promotion of equality and the prevention of unfair discrimination based on disability remains.  The unfortunate perception that albinism is a sign of magical powers or a curse continues to blight South African society. The derogatory naming of a person with albinism as “inkawu” is dehumanising and unacceptable.   Also, associating the rape of People living with Albinism with the cure for AIDS is an indication of work that awaits me as MEC to intensify awareness and education on both Albinism and HIV.

In addressing the vulnerability and effects of exposure to the sun that is an additional threat to the health of People living with Albinism, in 2014 the Premier of Gauteng announced a partnership with the Albinism Society of South Africa through the Department of Social Development which has translated into 1 300 sun protection packs distributed monthly, as well as a quarterly distribution of hats to those affected by Albinism especially in the township areas in the province.

As the Provincial Government we are aware of the challenges that People living with Albinism face especially as it concerns access to dermatological services in local clinics. We do understand the adverse effects of this on the early detection of skin cancer and the required treatment thereof. We will as a department work together with organisations and other stakeholders to ensure that this and other issues facing People living with Albinism are adequately addressed.  

As a department, we note your call to the Presidency to firstly domesticate the UN Convention on the Rights of Persons with Disabilities, with the effect that all legislation and the whole of government should mainstream disability, secondly to generously resource programmes that support people with disabilities from the fiscus and other sources and thirdly provide support for vulnerable groups and strengthen the criminal justice system to end victimisation of people with disability.

We do agree that a more strategic approach to addressing the issues of People living with disabilities more broadly and albinism in particular is necessary. It is in the best interests of the Provincial Government and society at large that we de-mystify disability and more robustly integrate those we perceive to be different to the norm. A radical shift towards affirming People living with Disability and Illness is indeed the one way that we can change both the narrative and experience for those who are discriminated against.

As we join the international community in commemorating this day, allow me to borrow from the words of revolutionary Che Guevara in his letter to his children in 1965 when he said; ‘Above all, try always to be able to feel deeply any injustice committed against any person in any part of the world. It is the most beautiful quality of a revolutionary.

May these words inspire a call to solidarity with all People Living with Albinism, together with them we are ‘Still Standing Strong!

Thank you very much! 

EDITED BY: Creamer Media Reporter
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