If you or a loved one suffers from albinism, you can be sure that you will have come across ignorance, misunderstanding, fear, and prejudice. The same old story. If you are different, you are picked on, teased, bullied and often excluded socially. Perhaps albinism gets far too much attention because white skin and hair is so different, especially if you are living in Africa. Here are 9 things that you can relate to if you suffer from this disease.
1. You wish people were better informed.
You and I know that albinism is a very rare disease. It is estimated that only 1 in 17,000 in the USA are born with this genetic defect. It is simply a lack of melanin which normally adds color to skin and hair. Because of this deficiency in melanin, albinos have very fair or white hair and also white skin. Albinos may have problems with eyesight and may have only 20/100 vision. They have to be very careful in the sun and wear sunblock. They may also suffer from photophobia which is an extreme sensitivity to light. But, apart from that, they are perfectly normal. If people were better informed, they might start to treat you like a normal human being.
2. You wish people would stop staring.
This becomes extremely irritating. If people can accept different races and different body shapes, why on earth cannot they take an albino on board? This was the question that Megan Palmer, a 16 year old albino who is also a filmmaker, wanted to address. She felt there was an urgent need to educate people so that they would stop gawking. Her short film on albinism was nominated for four awards at the THIMUN Qatar Film Festival.
Megan has already achieved some of her objectives in that her film has gone viral on YouTube and is raising awareness about a forgotten minority. The characters in the film all talk about their difficulties and frustrations in living with albinism. It is a very moving tribute to their courage and persistence.
3. You wish filmmakers would stop portraying albino villains and weirdoes.
Nothing wrong with starring albinos in films but so far these have been almost all very negative portrayals. This only adds to the miscomprehension and intolerance. Have you seen The Da Vinci Code, for example? You may remember Silas, the albino monk who practises severe corporal mortification. What about the albino twins in The Matrix Reloaded? It seems that Hollywood has a penchant for portraying several albino characters who are evil, ruthless, and violent assassins. Name me one famous film with a normal, sympathetic or funny albino! The claim that many albino villains have saved some lousy films from oblivion is hardly a compliment.
4. You wish people would stop wanting to touch your hair.
In Megan Palmer’s film, several of the albino people talk about how disturbing it is to have people approach them and ask to touch their hair. Why would people want to touch your hair? They do not want to touch people with red hair for instance! These people are ignorant and although they may be seeking information, they are often unaware of their insensitivity.
5. You wish schools would help more.
When parents of children with albinism fill in an Education Plan or IEP, they are signalling that their children need extra help in the classroom. Teachers usually ensure that large print copies of textbooks and worksheets are available. But some children can manage quite well with proper reading glasses which can also help to correct astigmatism.Children may find that hand-held monocular devices and other magnifying aids are helpful.
The major problems arise when children have to socialize. Teasing and bullying are all too common, unfortunately. You feel that schools could do a lot more in making children aware of differences in ability and appearance and how to behave accordingly.
“I was insulted, harassed and tortured by my peers at school and during play.” – John Makumbe
6. You wish people were more aware of what is happening in Africa.
Ignorance and superstition in Tanzania and East Africa have now resulted in albinos being murdered! Estimates say that the rate of albinism in Tanzania is 1 in 2,000. It is a terrible tragedy because people believe that the bones and even the skin of albinos have magical properties. Some people believe that HIV and cancer can be cured by using the body parts. In addition, the albinos can rarely go out in the sun because of the risk of skin cancer. Their life expectancy is also much shorter than in western countries and many albinos die in their early thirties.
“To some of our African communities they think it’s a curse – having such a child.” – Jotham Makoha
7. You wish people did not place such a high value on labels.
Unfortunately, our society wants to label any difference or handicap from early childhood. The stigma of having a label slapped on you is so unfair. Labels such as ADHD, disabled, albino or the more general SEN (special educational needs) tend to exclude children. They emphasize the condition, rather than the person. Yes, the schools are catering for their needs but this should be a totally seamless process so that all children are included and will never be a target for abuse. Teaching children to be tolerant and supportive of differences should be one of the main pillars of the educational system.
8. You wish people would not ask such personal questions.
Whether you are a child or an adult with albinism, you will always be asked the wrong question, which is usually highly insensitive or obnoxious. People will try to see if your eyes are red because there is a stupid belief that this is the case. If only they knew! The fact is the light passing through the translucent iris means that a person may be seeing the actual blood vessels underneath. Most people with albinism have blue eyes but some have brown or hazel eyes. Then, some people even ask if you can see in the dark!
Some people will tease in a rather affectionate way but this very much depends whether the albino has a positive self image or not. It can be a useful starting point though for telling people the facts about albinism.
9. You wish there was more support and positive coverage in the media.
Coping with total ignorance, superstition and prejudice can be tough for the person with albinism. Myths abound. People will say that an albino can live for ever and that he or she is not really human! They are even afraid of touching an albino because they will be cursed.
In order to counter that, many organisations and support groups for people with albinism are working hard to get a positive and accurate message out. Information needs to be provided and the media should be doing more in this regard. Many people with albinism have found great support from these charities and have benefited enormously. Now, if the media gave those organisations more coverage that would be great.
Featured photo credit: Sanne de Wild via lensculture.com