I awoke today thinking about stigma. Stigma: a set of negative and often unfair beliefs that a society or group of people have about something. When I was a child, our family would often be out and about with our mother. Invariably at the shoe store or the park or at the doctor’s office a stranger would look at us, then unashamed, ask mother who I belonged to? Each time without fail, sometimes with grace and sometimes not, she told the person that I belonged to her. All movement on our part would cease. We knew the rigid back stance, the clear modulated voice our mother used. Her anger was barely contained as yet again she was required to explain, claim, and defend me. The thing is, had any of these insensitive people really looked, they would have seen how much I resembled my mother.
I share this story as this type of interaction happens frequently for parents of children with albinism, especially in nonwhite cultures. This is especially the case for families in Africa where the presence of a child with albinism carries not only stigma from the community but potential danger for the child as well. There have been countless stories of violence toward people, especially children with albinism in East Africa. Remi and Barak are but two of many who have been attacked. They are fortunate in that they are alive. However they bear both physical and emotional scars of the attacks. The cost of stigma in this case is abject fear, causing PWA’s to remain within the safety of their homes. For children it means isolation, restricted opportunities for education as well as a lack of understanding as to why they are treated differently.
One of the ways we can lift stigma is through education and awareness. OHCHR – United Nations Human Rights, Office of The High Commissioner has launched a campaign called People with Albinism Not Ghosts but Human Beings http://albinism.ohchr.org The website contains a wealth of information and I strongly encourage you to peruse it. Another way to squash stigma is as individuals to have an open mind and to be inclusive of others. It requires making a conscious effort, to be present, and to risk being a champion for someone else.
Shortly after I became a parent I found myself out with my young daughter. I often carried her in a sling which made taking buses easier as well as allowed me to keep her close. As I waited for the bus a woman approached me. Her question “where’d you get that black baby?” instantly propelled me back to my childhood. Like my mother, my back straightened. I was shocked. I knew I had two possible responses. The first was to tell her my child was none of her business and the second was to share that I was also black. It was simply that my skin was fair because of albinism. I opted for the latter because I believe in teachable moments. More importantly, I believe in having an open mind as well as living a life with compassion.
Images of Remi and Barak used from UTSS Facebook page.