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9 Things Only People With Albinism Would Understand

9 Things Only People With Albinism Would Understand

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.

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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.

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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.

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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.

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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

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Robert Locke

Author of Ziger the Tiger Stories, a health enthusiast specializing in relationships, life improvement and mental health.

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Last Updated on February 11, 2021

Easily Misunderstood by Others? 6 Barriers You Should Overcome to Make Communication Less Frustrating

Easily Misunderstood by Others? 6 Barriers You Should Overcome to Make Communication Less Frustrating

How often have you said something simple, only to have the person who you said this to misunderstand it or twist the meaning completely around? Nodding your head in affirmative? Then this means that you are being unclear in your communication.

Communication should be simple, right? It’s all about two people or more talking and explaining something to the other. The problem lies in the talking itself, somehow we end up being unclear, and our words, attitude or even the way of talking becomes a barrier in communication, most of the times unknowingly. We give you six common barriers to communication, and how to get past them; for you to actually say what you mean, and or the other person to understand it as well…

The 6 Walls You Need to Break Down to Make Communication Effective

Think about it this way, a simple phrase like “what do you mean” can be said in many different ways and each different way would end up “communicating” something else entirely. Scream it at the other person, and the perception would be anger. Whisper this is someone’s ear and others may take it as if you were plotting something. Say it in another language, and no one gets what you mean at all, if they don’t speak it… This is what we mean when we say that talking or saying something that’s clear in your head, many not mean that you have successfully communicated it across to your intended audience – thus what you say and how, where and why you said it – at times become barriers to communication.[1]

Perceptual Barrier

The moment you say something in a confrontational, sarcastic, angry or emotional tone, you have set up perceptual barriers to communication. The other person or people to whom you are trying to communicate your point get the message that you are disinterested in what you are saying and sort of turn a deaf ear. In effect, you are yelling your point across to person who might as well be deaf![2]

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The problem: When you have a tone that’s not particularly positive, a body language that denotes your own disinterest in the situation and let your own stereotypes and misgivings enter the conversation via the way you talk and gesture, the other person perceives what you saying an entirely different manner than say if you said the same while smiling and catching their gaze.

The solution: Start the conversation on a positive note, and don’t let what you think color your tone, gestures of body language. Maintain eye contact with your audience, and smile openly and wholeheartedly…

Attitudinal Barrier

Some people, if you would excuse the language, are simply badass and in general are unable to form relationships or even a common point of communication with others, due to their habit of thinking to highly or too lowly of them. They basically have an attitude problem – since they hold themselves in high esteem, they are unable to form genuine lines of communication with anyone. The same is true if they think too little of themselves as well.[3]

The problem: If anyone at work, or even in your family, tends to roam around with a superior air – anything they say is likely to be taken by you and the others with a pinch, or even a bag of salt. Simply because whenever they talk, the first thing to come out of it is their condescending attitude. And in case there’s someone with an inferiority complex, their incessant self-pity forms barriers to communication.

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The solution: Use simple words and an encouraging smile to communicate effectively – and stick to constructive criticism, and not criticism because you are a perfectionist. If you see someone doing a good job, let them know, and disregard the thought that you could have done it better. It’s their job so measure them by industry standards and not your own.

Language Barrier

This is perhaps the commonest and the most inadvertent of barriers to communication. Using big words, too much of technical jargon or even using just the wrong language at the incorrect or inopportune time can lead to a loss or misinterpretation of communication. It may have sounded right in your head and to your ears as well, but if sounded gobbledygook to the others, the purpose is lost.

The problem: Say you are trying to explain a process to the newbies and end up using every technical word and industry jargon that you knew – your communication has failed if the newbie understood zilch. You have to, without sounding patronizing, explain things to someone in the simplest language they understand instead of the most complex that you do.

The solution: Simplify things for the other person to understand you, and understand it well. Think about it this way: if you are trying to explain something scientific to a child, you tone it down to their thinking capacity, without “dumbing” anything down in the process.[4]

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Emotional Barrier

Sometimes, we hesitate in opening our mouths, for fear of putting our foot in it! Other times, our emotional state is so fragile that we keep it and our lips zipped tightly together lest we explode. This is the time that our emotions become barriers to communication.[5]

The problem: Say you had a fight at home and are on a slow boil, muttering, in your head, about the injustice of it all. At this time, you have to give someone a dressing down over their work performance. You are likely to transfer at least part of your angst to the conversation then, and talk about unfairness in general, leaving the other person stymied about what you actually meant!

The solution: Remove your emotions and feelings to a personal space, and talk to the other person as you normally would. Treat any phobias or fears that you have and nip them in the bud so that they don’t become a problem. And remember, no one is perfect.

Cultural Barrier

Sometimes, being in an ever-shrinking world means that inadvertently, rules can make cultures clash and cultural clashes can turn into barriers to communication. The idea is to make your point across without hurting anyone’s cultural or religious sentiments.

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The problem: There are so many ways culture clashes can happen during communication and with cultural clashes; it’s not always about ethnicity. A non-smoker may have problems with smokers taking breaks; an older boss may have issues with younger staff using the Internet too much.

The solution: Communicate only what is necessary to get the point across – and eave your personal sentiments or feelings out of it. Try to be accommodative of the other’s viewpoint, and in case you still need to work it out, do it one to one, to avoid making a spectacle of the other person’s beliefs.[6]

Gender Barrier

Finally, it’s about Men from Mars and Women from Venus. Sometimes, men don’t understand women and women don’t get men – and this gender gap throws barriers in communication. Women tend to take conflict to their graves, literally, while men can move on instantly. Women rely on intuition, men on logic – so inherently, gender becomes a big block in successful communication.[7]

The problem: A male boss may inadvertently rub his female subordinates the wrong way with anti-feminism innuendoes, or even have problems with women taking too many family leaves. Similarly, women sometimes let their emotions get the better of them, something a male audience can’t relate to.

The solution: Talk to people like people – don’t think or classify them into genders and then talk accordingly. Don’t make comments or innuendos that are gender biased – you don’t have to come across as an MCP or as a bra-burning feminist either. Keep gender out of it.

And remember, the key to successful communication is simply being open, making eye contact and smiling intermittently. The battle is usually half won when you say what you mean in simple, straightforward words and keep your emotions out of it.

Reference

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