Advocacy

Find information here on advocacy, which seeks to ensure that people with albinism can have their voice heard on issues that are important to them. Advocacy enables people with albinism to access information and services, and to defend and safeguard their rights.

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“When you break barriers, it is like a multiple victory”

In a recent episode of Africa: State of Mind, international model, prosecutor, poet and activist Thando Hopa speaks out about some of the life challenges she has faced and how she overcame the struggle of living with albinism and was able to reimagine what identity is.

https://omny.fm/shows/life-podcasts/thando-hopa-the-struggle-of-living-with-albinism

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Christian Tchidjo, a person with albinism, shared his story of living with albinism at the London Symposium on Albinism in Africa in June 2017.

 

being different

i am a person, i am human

i am different, i embrace that;

treat me humanly equal, i appreciate that;

love me regardless for god has a purpose for us all;

persecute me not for i am a PWA;

i am PWA proud for i am simply human;

albinism scorn is an act of evil;

targeting albinism makes you less human;

for i am human just like you;

i lack skin pigmentation and that does not make me less human;

i have more problems and scorn daily and that makes me strong;

i am a human just like you;

i am happy and embrace my albinism for god has purpose for me;

god loves his creations and i am one of his creations;

love me for who i am and not persecute what you do not understand;

appreciate me for what i do and not abhor my looks;

friend my personality and not loathe my skin pigmentation;

for i am a human and proud to be a PWA;

africa please love me and respect PWA;

africa please stop persecuting my kind;

africa please embrace god’s creations;

africa i cry to you to treat me right.

africa please respect !!!!

 

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Standing Voice

Many international organizations work to advocate and to improve the situation of people with albinism across Africa. One organization making an incredible contribution to this work is Standing Voice, an international non-governmental organization based in Tanzania and Malawi, with its headquarters in the United Kingdom.

Standing Voice was set up by Harry Freeland and Anton Bilton to tackle the social exclusion of people with albinism in Tanzania and wider East Africa. Today, Standing Voice designs and delivers health, education, advocacy and community programmes that reach thousands of people with albinism across Tanzania on a regular basis.

To take just one example of these programmes, the Standing Voice Skin Cancer Programme provides an expanding network of regular skincare clinics that reaches thousands of people with albinism in their own communities across Tanzania.

To find out more about Standing Voice, visit: http://www.standingvoice.org/about

 

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International Albinism Awareness Day in Cameroon – the work of AFAC

Each year, the Association des Femmes Albinos du Cameroun (AFAC) organises an event to mark International Albinism Awareness Day on 13 June. This date was chosen as International Albinism Awareness Day (IAAD) since it was on that day in 2013 that the UN adopted its first ever resolution on albinism.

AFAC is headed up by their dynamic President, Mme Marie Madeleine Wafo. The aims of the association are to represent people with albinism, to fight against all forms of discrimination (social, familial, cultural, economic and professional) faced by people with albinism, to raise awareness on the negative impact of stigmatisation, to promote the talents of people with albinism and to celebrate the achievements of people with albinism.

Every year, AFAC organises a show that celebrates the talent, beauty and intelligence of people with albinism.

In 2017, they are planning to celebrate International Albinism Awareness Day with a series of events under the theme of ‘Célébrons la diversité et protégeons nos droits’ (Celebrate diversity and protect our rights). Events will include a press conference, an exhibition, a presentation on albinism, skin care consultations and a gala evening.

To contact AFAC, please see their contact page.

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Bonface Massah is the Chair of The Albino Association of Malawi. He tells us in his own words about his experience of living with albinism and his views on the priorities for effective advocacy.

As a person with albinism I have come to realise that I can do what others can do. Throughout my life when I was young I did not mind or consider the way I look. I had nothing to do with my appearance. I know this was part of my childhood, but it has helped me a lot to look at myself strongly till now. I have the energy to say I can do it, growing up in a family with all the love and acceptance from my dad, mom, a brother and sisters made me to see the world the same. Being a third born child with albinism in the family meant that my parents had already experience in raising children with albinism. I was not the strange ‘things’ as others call it in the family, but I was a bouncing baby boy Bonnie.

Now a grown up and married, I feel I have the ability to help other and fight for my own rights and respect in the society. My interest has been focused on contributing to the promotion of human rights through policy advocacy and implementing best practices. Growing up in a community where my parents and society loved me so much because of my albinism has made me to realize the need to promote human rights and create an inclusive society in particular for persons with albinism.

Being white in a majority black society is not easy. Parents, community and the environment need to accept us; no mocking, bullying and discriminatory names. I do realise that my case is not different from many persons with albinism, hence I would always fight for our rights and consistently lobby and advocate for equal human rights and respect of the law regardless of our abilities. The love and support I received from those around me in my family, at school, workplace and society has made me to develop a positive attitude towards attaining my goals and a career. I believe that through awareness on disability rights we can build a community of trust, where persons with disability can also enjoy their rights like all citizens and make life choices. It is through recognizing of these rights that will help to address the diversity needs of the different forms of disability.

My work experience as an advocate has shown me that even those whom we thing are educated and understand issues better and will always support us, are the ones who always forget us. They look at inclusion of issues of albinism as less priority issues in their mind and plans; hence we are left out in development initiatives and services to target. These are the negative attitudes and high levels of ignorance that have led to persons with albinism being marginalized and vulnerable. For instance, the sexual rights of women with albinism are ignored due to their disability and many suffer silently from domestic violence. Often young girls with albinism not only suffer from these abuses but also it affects their self-esteem and aspirations in life, like marriage and education.

The evidence of inequalities in terms of human rights among persons with albinism seem to be obvious, but have led to lack of specific support to address their human rights. For example, the right to health and education, severe cases of skin cancer, to information on HIV/AIDS, gender, reproductive issues and educational materials are not accessible, not in large print format. The communities and government do not accord adequate time and resources to advocate for our rights maybe because they think everybody understand us as we are visible due to our albinism condition. However, to develop good governance for sustainable human development, persons with albinism like other groups of persons with disabilities must be involved in all decision making stages from the family to national politics. More than 4% of Malawi’s population is composed of people with disabilities, which include those with albinism; hence we must have equal opportunities to participate in public decision-making processes. Nothing for us without us, representation without empowerment of persons with albinism at all levels of the society is not enough to attain inclusion. Thus the inequality in human rights issues and power sharing has led to unequal sharing of resources, service provision and few human rights experts to address our rights as persons with albinism.