Inclusive, Enabling Communities

Inclusive, Enabling Communities
Learning Brief


Human Rights Media Centre

Raising awareness for the rights of marginalised people: Lessons from the Albinism Anti-discrimination Project

Category: Inclusive, Enabling Communities | Mission-focused connections across NGOs | 14 August, 2013 - 22:00

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The Human Rights Media Centre (HRMC) in Cape Town is a not-for-profit organisation that promotes awareness and activism about human rights through various narrative history projects, media, educational material, and social interventions. One of its initiatives is the Albinism Anti-discrimination Project, which aims to debunk myths and educate communities about albinism.

What is albinism and why is it important?

Albinism is an inherited genetic disability whereby people with the condition make little or no melanin – the chemical that produces pigment for skin, hair, and eyes. Without pigment, people are vulnerable to harmful ultra violet (UV) sunrays and, as a result, many suffer from skin cancers. Lack of melanin also causes under-development of the retina and reduces eyesight. Access to affordable sunscreen and sunglasses can dramatically improve the quality of life for people living with albinism.

In addition to the medical complications, people with albinism are subjected to severe social stigma. They are publically and socially belittled or ridiculed, and in many parts of the country they are particularly vulnerable to “muti-killings” and prone to sexual abuse. Unfortunately, in South Africa, there are few protective structures in place to ensure the safety of people living with albinism. Government agencies and policy makers have not focused on specific services and support required for the full inclusion into society of people with albinism.

Nationally, people living with albinism are not well organised and are not vocal in advocating their special needs. The Albinism Society of South Africa is based in Johannesburg, and has only one other provincial base in Kwa-Zulu Natal. Furthermore, there is a dearth of research and very few statistics on the number of people with albinism. Consequently awareness of this condition is low, and compounded by myths and fact-less prejudices.

Purpose of the HRMC’s Albinism Anti-discrimination Project

Started in 2009, the Albinism Anti-discrimination Project aims to eradicate albinism prejudice in South Africa. Understanding the struggles of persons with albinism has been a constant thread in the HRMC’s work. Through this project the HRMC has produced five information-sharing booklets that each tackle issues facing people with albinism. It has also raised awareness for albinism via local media sources, and mobilised community support for an advocacy campaign to improve the quality of life of persons with albinism. These activities are discussed below and are followed by a frank discussion of the lessons learned at each step of the way.

Raising awareness through published material

In order to raise awareness about blindness, the HRMC has published five books that are partially based on the real-life stories and lived experiences of persons with congenital blindness and impaired vision. Three of these books include stories from people with albinism. These three titles are:

  1. Looking Inside: five South African stories of people living with albinism (2009),
  2. Ukukhulula Amatyathanga: Amabali amathandathu aseMzantsi Afrika abantu abenengxaki yokubona (2013)
  3. Khangela Ngaphakathi: Amabali amahlanu aseMzantsi Afrika abantu abaphila nokuswela ibala (2013).

With funding support from the DG Murray Trust in 2013, the HRMC has been able to complete a fourth booklet titled Understanding Albinism: an inherited and manageable condition and disability, which is intended for national distribution. It provides facts, debunks myths, and sensitises readers to the daily struggles of people with albinism. The 70-page book is a ground-breaking resource for people living with albinism and their close associates, such as family, healthcare professionals, and teachers. It is written in plain English with illustrations. Electronic copies of the full text may be downloaded from the HRMC website.

The book Understanding Albinism, was a larger than anticipated initiative. It involved many consultations with multiple stakeholders, such as medical and genetic experts, and the Western Cape Albinism Support Group, which took a lot of manpower and resources. It also involved meticulous and thorough literature research in order to ensure accuracy as well as contextual appeal.

Lessons learnt – Consultations with members of the Western Cape Albinism Support Group played a critical role as a sounding board against which to test the detail and depth of information to be published in the book. Likewise, individuals were invited to attend a national consultative meeting in Kleinmond, Cape Town, in February 2013 to provided valuable insight into the book’s content and structure. These feedback sessions give the book authenticity and authority to speak to issues affecting the lives of people living with albinism.

The HRMC has garnered the partial support of the Deputy Minister of the department for Women, Children and Persons with Disabilities, and is currently engaged in negotiations with the Department of Basic Education regarding the distribution of the Understanding Albinism book in 22 special schools across the nation.

However, although the Deputy Minister of the department for Women, Children and Persons with Disabilities, asked to contribute to the content of the book, and asked to publicly launch the book, her involvement has been postponed on numerous occasions. The Deputy Minister was also unable to attend the national consultative meeting. This has delayed the book printing and its launch unnecessarily.

Stimulating community campaigns for accessible access to sunscreen

Through its media campaigns, booklets and consultation with government stakeholders, the HRMC aims to stimulate community campaigns for free access to broad-spectrum <30 SPF sunscreen lotions and sunglasses for those with albinism.

The organisation has attempted to consult state actors and government department representatives in order to galvanise support for the successful implementation of this national sunscreen campaign to improve the quality of life of people with albinism. It has approached the following government departments: Department of Health; Department of Women, Children and Persons with Disabilities; Department of Social Development and Basic Education.

In February of 2013, the HRMC hosted the second, three-day national consultative meeting to foster commitment for the campaign for free access to broad-spectrum SPF <30 sunscreen lotion. Invited guests included two delegates from every province who were themselves albino or parents of children with albinism.

Lessons learnt – Securing meetings with state actors has been slow going and government representatives have little interest in the sunscreen campaign. But the HRMC presses on in calling government offices to arrange meetings because it aims to play a strategic mediatory role between government organisations and effected people on the ground, to bring about change.

Local media campaigns and other outreach activities

In addition to the book/booklet publications, representatives from the Albinism Anti-discrimination Project sat for talk shows on radio and have been invited to speak at public events. The project is also in the process of composing short media briefs and adverts to be displayed in local newspapers or free magazines.

Lessons learnt – In order to strengthen its efforts the HRMC’s Albinism Anti-discrimination Project and the ASSA have joined forces to share operational and campaign efforts towards raising awareness for albinism. Together they are also approaching the Constitutional Court and the Human Rights Commission regarding the case of an albino father, Matsiane Cossa, who is currently denied access to his child because he is believed to be cursed as an albino. And they utilise organisational contacts in government to secure meetings and garner political support.

Conclusion

Through these initiatives, the leaders of the Albinism Anti-discrimination Project have managed to raise awareness of this condition. Their practical lessons are valuable for other organizers interested in campaigning for the rights of marginalised people in South Africa.

 

Human Rights Media Centre


2 Mains Avenue, Cape Town  


 +27 (0)21 762 2092


 www.hrmc.org.za/

In Short

The Albinism Anti-discrimination Project is a small entity tackling a big problem facing many South Africans living with albinism. In this learning brief the project leaders share how they have managed to raise awareness of this condition through the publication of high-quality books and media engagement; and they share frankly about their struggles in garnering government support for helping people with albinism access free, life saving sunscreen.


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