Admittedly, albinism is something that I have never given much thought to. I was actually quite surprised when I saw it appear as a workshop title amongst other issues during our week in Valencia discussing Human Rights. Yes, I knew what the condition was, I've even met people with the condition before. However, these people I have met... I'd never considered their lives to be much different to my own. Their skin, hair and general appearance was different, but I could never imagine it hindering their daily lives.
Our hosting organisation "Fundación por los Derechos Humanos" ran an intense workshop, completely opening my eyes to the condition and the hardships it causes in parts of the world that don't understand it or are ill-equipped to deal with it. We mainly focused on remote parts of the African continent, where the fierce sunlight makes it extraordinarily difficult for people with albinism to cope. Without the appropriate sunblock and eye protection, it can often lead to aggressive skin cancer and significant sight loss. This really shocked me. We saw photos of people covered in tumours, with obviously sight loss, which could be prevented very easily and cheaply. It changed their appearance further, but also stopped them from leading normal lives, and would eventually lead to early death.
At this point the workshop got very emotional, as we moved from the physical trauma albinism caused, to the social. Albinism is still greatly misunderstood in some parts of the world, and as human nature dictates; when the cause for something is unknown, we tend to try to fill in the gaps. Unfortunately, this is devastating for people with this condition and their families. In some parts of rural Africa, women that give birth to albino children are accused of having slept with white men, of being adulterous, even of witchcraft. The entire family will be excluded from their communities. When the child grows up, he/she will continue to suffer this exclusion. Often, they are avoided because it is commonly thought that it is a highly contagious disease. Conversely, it is also believed in some parts that having sex with a person with albinism will cure you of AIDS/HIV; leading to high instances of rape and sexual disease amongst albinism sufferers.
Most traumatically, a myth amongst witchdoctors has developed, stating that potions made with bones from albino people will bring wealth (or good fortune, or cure ailments, or whatever the patient is looking to pay money for). This has lead to a sharp increase in the hunting and killing of these people. A documentary in this workshop showed victims of this abuse, that had been caught and maimed in order to obtain a bone or two to sell for profit. One story is particularly haunting; a child with albinism is sitting eating with his father, a man comes along and restrains the child and starts hacking away with his machete whilst the father looks on. It later surfaces that the father had been paid for letting the hunter do this.
The presentation was followed by silence. Many of us had to gather ourselves before we could start our discussion, but when it did start, all of us were outraged, and (speaking for myself) ashamed that I had known so little before.
We talked about solutions. The obvious starting point was education. Many of these myths and social intolerance came through a lack of understanding of the condition. If more people knew that it was a genetic condition that was not contagious, and didn't change that person in any way except pigmentation, a lot of the issues paired with albinism would disappear. Simultaneously, supporting healthcare needs to be provided to these people. Sunscreen and eye protection are essentials. At the moment, clinics are available to deal with skin cancer, but these are few and far between.
The real issue that would be difficult to overturn is the superstition of the witchdoctor. These people are often community leaders and thought of as wisemen. If they continue to transmit myths about albino bones, people will continue to hunt and pay for them. Certain communities have started initiatives that safely accommodate, protect and educate albino children, but this can only be a short term solution. Once these children are educated, there is nowhere to go. It also means there are less people with the condition out in society, making it even more difficult for them to be accepted.
We came to the conclusion that there has to be more awareness of the issue, and education about what it is. Unfortunately, we recognise that myths take longer to dispel than to fabricate, but it must be done.