Shifting perceptions: Celebrating strengths and fostering inclusion for persons with albinism

David was born in the Eastern Province, near the border of Rwanda and Tanzania, sometime between 1980 and 1990. He was born with albinism at a time when many myths about people with this condition were circulating. Albinism is an inherited skin condition that causes people to have little or no melanin in their skin, hair, and eyes. This condition is associated with various life-long physical impairments due to its effect on the skin and vision. One prevalent myth claimed that drinking the blood of a person with albinism would grant supernatural powers and good luck. Another myth suggested that chopping up the body parts of a person with albinism and taking them to a witchdoctor would also bring luck. They are also often considered as a curse to the family. As a result of these myths, human trafficking of persons with albinism was a common practice on the continent, and neighbours advised David’s father to sell him, promising a significant sum of money and the) removal of the family curse. One morning, when David was about seven years old, his father requested him to accompany him on a trip. Upon arriving, David’s father stepped aside to talk privately with a man. The conversation grew heated, and David overheard them negotiating about money. When his father said he wouldn’t sell his child for such a small amount, David realised he was in danger. Terrified, he ran away. Although such human trafficking seems to have ended, many persons with albinism still face stigma and discrimination in their families, often perceived as weak, a burden, or as people associated with evil spirits. These deep-seated beliefs result in persons with albinism being left behind to live in extreme poverty. Shift in perceptions – from legal frameworks to mindset change Rwanda has made significant strides in protecting the rights of persons with albinism through robust legal frameworks, such as the Disability Law No. 01/2007, and the National Policy on Disability 2021. These legal measures provide a solid foundation for safeguarding the rights and well-being of individuals with albinism. However, true transformation requires shifting societal perceptions. Beyond laws, fostering mindset change is crucial to dismantling myths and stereotypes about albinism. Celebrating the strengths of individuals with albinism, promoting their inclusion in all aspects of life, and raising awareness through education and community engagement are essential. This holistic approach ensures that persons with albinism are not just protected by laws but embraced and valued as integral members of society. In 2019, UNDP provided support to the Organization for the Integration and Promotion of Persons with Albinism (OIPPA), a partnership that not only addressed immediate needs but also laid the groundwork for long-term systemic changes to ensure the full integration and promotion of individuals with albinism in all aspects of Rwandan society. Such integration provides an opportunity for their talents and abilities to flourish and be appreciated by the society. David is rescued and thrives David found refuge with priests who took him into their home, becoming his family and providing unwavering support. He attended school and completed his university education. After finishing school, he secured an excellent position as a programme manager in an NGO. Now that he has achieved professional success, he is able to support the advancement of both his community and his nation. Perceptions are changing slowly. Yet, as they do, we can highlight the unique strengths and capabilities of individuals with albinism, bringing a different perspective that further emphasises their abilities and contributions to society. To bring about this continuous shift in perspective, we need to focus on three key actions: · Encourage media to portray persons with albinism in a positive and diverse light. · Highlight success stories of persons with albinism across various fields. · Foster community engagement to encourage interactions and collaborations between persons with and without albinism. Broader inclusion for all disabilities This inclusive approach must extend to all individuals with disabilities, ensuring that every person, regardless of their specific challenges, is embraced and valued. By fostering an environment of diversity and providing equal opportunities in education, employment, healthcare, and social participation, we can create a society where everyone has the chance to thrive. Empowering individuals with disabilities enriches our communities, promotes innovation, and strengthens social cohesion. It is essential that our efforts to dismantle stereotypes, raise awareness, and implement supportive policies are comprehensive and far-reaching, ultimately leading to a more inclusive and equitable world for all. It’s about creating inclusive environments, dispelling myths, and advocating for equal opportunities and rights for all. By doing this, we not only empower individuals but also improve our communities and society. Liliane Akadata is an expert in disability inclusion advocacy with the United Nations Development Programme in Rwanda. She is passionate about inspiring and helping persons with disabilities to reach their full potential. Liliane has contributed to the development of legal disability protection frameworks.

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Shifting perceptions: Celebrating strengths and fostering inclusion for persons with albinism