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The Open Society Initiative for Southern Africa (OSISA) and the Centre for Human Rights, University of Pretoria, invite you to a Brown Bag Seminar and Photo Exhibition on International Albinism Awareness Day (13 June).

The theme for International Albinism Awareness Day 2019 is #StillStandingStrong

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Date: Thursday 13 June 2019
Time: 09:30 – 13:00
Venue: OSISA Offices, 1st Floor President Place, 1 Hood Avenue, Rosebank, Johannesburg

RSVP: PatriciaD@osisa.org (please indicate whether you will require parking)

Concept Note: Dialogue on Human Rights Situation of Persons with Albinism in Southern Africa 

Background

Calls for the adoption of immediate and effective measures to respect, protect, promote and fulfill the human rights of persons with albinism have been intensifying of late with the spotlight squarely on the African region. The calls underscore the severe nature of stigma and discrimination faced by persons with albinism in many parts of Africa. Whilst albinism-related stigmatisation and discrimination are universal phenomena, in the African region, persons with albinism experience not just higher levels of stigmatisation and discrimination, but human rights violations of a much higher magnitude, including extreme acts of violence.

The most serious human rights violations faced by persons with albinism in the African region are killings and mutilations driven by superstition and fueled by a demand for, as well as trade in, body parts. The demand and trade stem from erroneous beliefs and myths which associate albinism with the supernatural in combination with witchcraft practices that treat the body parts of persons with albinism as magical and sources of wealth, power and omens for good luck. Young children have been particularly vulnerable to killings, mutilations and abandonment on account of their dependence and general inability to defend themselves from attacks. Other serious human rights violations, which imperil the lives and physical integrity of persons with albinism, include the rape of women and girls in the belief that it is a cure for the disease.

The human rights violations faced by persons with albinism extend far beyond violence. Fear of violence causes displacement and separation of families when, for example, young children are removed from their families and localities where they are believed to be vulnerable and placed into protective care. Societal stigma and discrimination against persons with albinism are also experienced in other socio-economic sectors, especially in the health, education and employment sectors. Marginalisation and exclusion of persons with albinism in these sectors ultimately impact negatively on life chances. Cumulatively, albinism-related discrimination produces a vicious cycle of socio-economic barriers that consigns many to poor health, unemployment, and poverty.

International and regional responses

The intensity of albinism-related discrimination in the African region has begun to inspire new human rights responses and developments. In 2013, the Human Rights Council adopted a resolution on attacks and discrimination against persons with albinism. The resolution followed a report by the Office of United Nations High Commissioner for Human Rights (OHCHR), Persons with Albinism, documenting human rights violations committed against persons with albinism as well as recommending remedial action. The OHCHR report focused on Africa precisely because it is the region where the human rights of persons with albinism are most under attack. In December 2014, the General Assembly adopted a resolution recognising June 13 as International Albinism Awareness Day. In June 2015, the Human Rights Council appointed the first Independent Expert on the enjoyment of human rights by persons with albinism, Ms Ikponwosa Ero, a national of Nigeria. The appointment marked a significant step towards augmenting human rights mechanisms for the protection of the human rights of persons with albinism.

From a regional perspective, in 2013, the African Commission on Human and Peoples’ Rights adopted a resolution calling upon African States to adopt effective measures to eliminate all forms of discrimination against persons with discrimination, including violence (ACHPR/Res.263). In March 2015, the African Committee of Experts on the Rights and Welfare of the Child published a report - Report on Investigative Mission on the Situation of Children with Albinism in Temporary Holding Shelters – Tanzania. The report follows a visit to the Lake Zone region of Tanzania by the Committee to investigate the human rights of children with albinism. In 2016, the Commission issued another resolution (ACHPR/Res.349) on the attacks on persons with albinism in Malawi.

As a result of broad consultation undertaken in the region under the auspices of the United Nations Independent Expert on the enjoyment of human rights by persons with albinism, the Regional Action Plan on Albinism in Africa (2017–2021) was formulated in 2016.

The plan which is a direct response to the systematic attacks and human rights violations against persons with albinism in multiple African countries and consists of the recommendations made by various human rights bodies and mechanisms at the United Nations and African Union levels which have been distilled into concrete and specific measures. The measures are achievable over the immediate, short to medium term (0 to 5 years) while triggering long term initiatives (beyond five years).  They are divided into four clusters: prevention, protection, accountability and equality and non-discrimination. The plan has been endorsed by both the African Commission in 2017 (ACHPR/Res.373) and the Pan African Parliament in 2018. (PAP.4/PLN/RES/05/MAY.18).

An online platform to monitor progress on the implementation of the plan (https://actiononalbinism.org/) was recently launched to serve as a coordination platform for mobilizing and coordinating resources as well as organizations committed to the implementation of the plan.

International Albinism Awareness Day 2019 Theme: Still Standing Strong

"Still Standing Strong" is the theme for this year's International Albinism Awareness Day. The theme is a call to recognise, 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. Despite all these challenges, persons with albinism remain positive and are STILL STANDING STRONG!

Dialogue on Human Rights Situation of Persons with Albinism in Southern Africa

The human rights situation of persons with albinism in Southern Africa together with regional and international initiatives to combat these violations such as the Regional Action Plan on Albinism remain relatively unknown amongst mainstream civil society organisations and funding partners/donors. This lack of knowledge has inevitably resulted in the absence of engagement on the issue by mainstream civil society organisations and low funding from the donor community. The Centre for Human Rights, University of Pretoria and the Open Society Initiative for Southern Africa will be hosting a breakfast dialogue on 13 June 2019, at 09:30 to 13:00 at OSISA headquarters at 148 Jan Smuts Ave, Rosebank, and Johannesburg.

The dialogue is aimed at:

  1. Providing persons with albinism from Southern Africa across different generations a platform to share their lived experiences;
  2. Sensitising and informing civil society organisations and funding partners of the human rights situation of persons with albinism in Southern Africa and regional and sub-regional developments;
  3. Collectively beginning to explore strategies for funding and resourcing existing and future initiatives that advance the human rights of persons with albinism in Southern Africa; and
  4. Explore effective partnership and collaboration opportunities between civil society organizations and other interested partners.

During the dialogue, the photobook “Albinism in Generation” by Adebayo Okeowo a human rights lawyer and award-winning photographer, will be launched. The photobook tells individual stories of persons with albinism through different generations – the child, the teenager, middle-aged and older person.

The exhibition “ALBINISM - Shining Our Light to the World” by the Spanish photographer Ana Yturralde highlights through natural portraits of persons with albinism their realities, including the challenges and barriers they have to face every day, will be on display.


 For more information, please contact: 

Jehoshaphat John Njau
Project Coordinator: Disability Rights Unit

Tel: +27 12 420 5408
Fax: +27 (0) 86 580 5743
jehoshaphat.njau@up.ac.za

Innocentia Mgijima-Konopi
Manager: Disability Rights and Law Schools Programme

Tel: +27 (0) 12 420 6398
Fax: +27 (0) 86 580 5743
innocentia.mgijima@up.ac.za

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