By Carmella Munyuzangabo
Social Connectedness Fellow 2018
There is perhaps no more painful thought in the world than “I do not belong.” It is easy to feel this way when we are isolated, especially when it is a direct result of social stigmatization and discrimination. Many groups of people such as women, people of colour, and people with disabilities are made to feel like they do not belong in society by powerful institutions. These groups are discriminated against in healthcare, education, and access to employment because they are perceived as different and thus threatening to the status quo. Worldwide, people with albinism are ostracized and often have limited social and medical support because albinism is still profoundly misunderstood.
Albinism is a genetic condition characterized by a lack of production of the pigment melanin, which is usually found in skin, eyes, and hair. The difference in appearance between ‘normally’ pigmented people and those with albinism is often the object of inaccurate and harmful beliefs about the condition. As these discriminatory beliefs and social attitudes have spread and are supported in social and medical institutions, people with albinism are pushed further to the margins of society. They are isolated and face violence and persecution.
Discrimination takes various forms. The term ‘albino’ is often used in a derogatory way to dehumanize people with albinism. Additionally, characters with albinism in media are almost exclusively portrayed as deviant, supernatural, or evil. These negative images are ingrained in many societies, and discrimination is especially rampant in sub-Saharan African countries, where the Blackness of people with albinism is always questioned. Albinism advocacy groups estimate that more than 90% of people with the condition in sub-Saharan Africa die before they reach the age of 40, due to persecution or intense exposure to the sun.
In Tanzania, people with albinism are believed to either bring bad luck or possess magical powers. Their safety is often at risk as they are kidnapped and killed. An inevitable emotional response to experiencing discrimination is feeling hopeless. Discrimination and persecution have incredibly damaging emotional and mental effects, and people with albinism often experience depression, anxiety, and other forms of psychological stress. These feelings are only heightened as they continuously face social exclusion. Women, for instance, are often blamed and abandoned after having a child with albinism. Consequently, children with albinism are vulnerable to attacks and being displaced.
Although there have been policy reforms to address this issue, some have had harmful impacts, reinforcing the exclusion of people with albinism. In Kabanga, the Tanzanian government coordinated with faith-based organizations to design shelters for children and youth with disabilities. Since their inauguration, these shelters have become homes for people with albinism who are escaping persecution. However, Under the Same Sun, an international NGO, performed a monitoring and evaluation of the shelters and concluded that they were enabling the segregation of people with albinism. Standing Voice, a human-rights NGO based in Tanzania, performed a psychosocial needs assessment at the shelters and found poor living conditions and severe levels of depression among the residents. It is clear that social stigma and institutional neglect have played the biggest roles in the continued discrimination of people with albinism.
Going forward, governments must play a bigger role in ending violence against people with albinism. The right to freedom from discrimination requires states to adopt tangible strategies to ensure that people with albinism are afforded protection under the law and in practice. In order to implement this goal, more states should establish organizations with robust programs that would provide services to people with albinism. Having institutionalized organizations that advocate for the respect and recognition of people with albinism would empower them and also raise awareness. It is vital that governments also have a comprehensive health policy for people with albinism. The condition requires lifelong management, as people with albinism have both visual impairments and sensitive skin – they are 1,000 times more at risk to get skin cancer.
While institutional efforts are being made to address the isolation and discrimination of people with albinism, it is crucial for us as individuals to put our own support into action. One way to do this could be to have a film screening at schools and organizations depicting the various realities of people with albinism. With better education, more people will understand that the condition does not define people with albinism, and therefore should not restrict their lives. According to Maslow’s Hierarchy of Needs, all people have needs related to esteem. What feeds our esteem is our own sense of self-worth and the respect we receive from others. By creating dialogue and raising awareness on albinism, we can change the mainstream narrative that dehumanizes the people with this condition. People with albinism deserve to be seen and respected, not just noticed – they deserve dignity. Like with all marginalized people, as social isolation decreases and access to healthcare and other resources increase, people with albinism will be more able to realize their full potential and live their lives without fear of discrimination.