16. Joining forces to fight stigma against people with albinism in Mali

Lina Kagkli
Aminata Traore

Voice: Voice is an innovative grant facility of EUR 35 million that supports the most marginalised and discriminated people in ten countries in Africa and Asia. It aims to amplify and connect thus far unheard voices in efforts to leave no one behind. It is an initiative of the Netherlands Ministry of Foreign Affairs, executed by a consortium between Oxfam Novib and Hivos. AMPA is one of the 18 projects funded by Voice that are currently implemented in Mali.

AMPA: Association Malienne pour la Protection de l'Albinos.

People with albinism are often victims of stigma in Mali

The discussion on disability as a development issue is long overdue. Strong legal frameworks and specific programmes are needed to support people with disabilities and meet their needs. In Mali, there is no strong legislation promoting their economic, social or cultural rights, and aside from a few selected government departments that promote inclusive employment, there are limited economic opportunities available for people with disabilities, intensifying their marginalisation.

People living with disabilities, including albinism, make up 10% of the Malian population. On top of political exclusion, social and historical beliefs towards people with disabilities create a huge barrier to attain basic and fundamental human rights as well as unleash human potential. Hostility towards people with disabilities is prevalent, to the point that in some remote areas, they are offered to religious leaders as sacrifices.

Due to misconceptions and myths about them, people with albinism experience daily threats to life, social stigma and isolation. Some people in Mali believe that albinos are ghosts or have magical powers. It is believed that their body parts can bring fortune, success and wealth, particularly in election periods; thus, there are unusually high rates of death among people with albinism during these periods.

Promoting socio-economic integration of albinos through social protection, advocacy and awareness

The Programme National de Sensibilisation sur les Discriminations sociales à l'Egard des Personnes atteintes d'Albinisme (PROSED’A) or National Awareness Programme on Social Discrimination against People with Albinism1 is a two-year project aiming to shift discriminatory attitudes, beliefs and practices against people with albinism in Mali through social protection, awareness raising, community mobilisation and advocacy. The project is implemented by the Association Malienne pour la Protection de l'Albinos (AMPA) or Malian Association for the Protection of Albinos, a locally registered organisation led by albinos defending the rights of people with albinism and promoting their socio-economic integration. PROSED’A is the first donor-funded project implemented by AMPA.

The project uses an integrated approach to shift attitudes and beliefs as well as influence local policy and practice. It prioritises the set-up of social protection mechanisms for people with albinism whose immediate environment is affected by discriminatory acts of violence. It also facilitates the provision of safe spaces for albinos to discuss how their personal spheres are affected by stigmatisation and to develop common change strategies to create equal opportunities on education and employment. Through PROSED’A, AMPA has provided psycho-social support system to families and friends of 568 people with albinism.

Simultaneously, through sensitisation activities and information sessions the association builds the capacity of local communities, service providers and power-holders (such as health providers, local chiefs, religious leaders or educational institutions) to better understand what albinism really is. Thus far, 631 people including local government officials, performing artists, health professionals (e.g. dermatologists offering free provision of sunscreen), paralegal trainers, social media activists have joined the association’s awareness raising and campaigning efforts.

AMPA brings together a variety of social actors - human rights activists and civil society organisations - to jointly advocate for the protection and inclusion of people with disabilities using creative public campaigning methods using performing arts (e.g. the organisation of a “Mr and Ms Albino” contest to celebrate inclusion and beauty rather than discrimination), to unite and amplify the voices of albino groups advocating for social and legal protection as well as integration.

Putting the target group in the driver’s seat and using unconventional campaign methods

The project’s uniqueness and effectiveness lie in two main factors. The first is that, being a project implemented by a target group-led organisation, PROSED’A offers the opportunity for people with albinism to craft their own advocacy strategies and customise campaigning activities.

The second is the engagement of other organisations and groups in creative, unconventional campaigning methods. Using performing arts (spoken word, music and movement) to convey stories of courage, engagement and solidarity towards victims of discriminatory violence has been effective in engaging a variety of power-holders to facilitate change at various levels. Within its first year of implementation, the project has been able to contribute towards shifting the mindset of more than 30 religious leaders, 8 local chiefs and a national government official to make immediate commitments that would safeguard the rights of people with albinism.

What next?

To scale up campaigning efforts, AMPA has started building a national movement bringing together likeminded organisations working on disability issues beyond albinism. This was especially deemed necessary when a young girl with albinism, Ramata Diarra, was killed during the recent presidential election campaign. AMPA was able to provide support to the family while mobilising the wider community around the issue. This included two more Voice grantees: FEMAPH - the national umbrella network for people with disabilities; Agoratoire - a young social enterprise for cultural exchange; and local organisations that focus on empowering young people with physical and mental disabilities. They joined forces to launch a joint campaign to ensure social protection measures for people with disabilities in Mali. Immediate results of AMPA’s campaigning efforts are already visible: After receiving a delegation of human rights organisations led by the association on 5 June 2018, the Malian Minister for Human Rights expressed her feelings of horror and indignation, which contributed to advancing the investigation into the reasons behind the murder.

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