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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 December 2, 2018

7 Public Speaking Techniques To Help Connect With Your Audience

7 Public Speaking Techniques To Help Connect With Your Audience

When giving a presentation or speech, you have to engage your audience effectively in order to truly get your point across. Unlike a written editorial or newsletter, your speech is fleeting; once you’ve said everything you set out to say, you don’t get a second chance to have your voice heard in that specific arena.

You need to make sure your audience hangs on to every word you say, from your introduction to your wrap-up. You can do so by:

1. Connecting them with each other

Picture your typical rock concert. What’s the first thing the singer says to the crowd after jumping out on stage? “Hello (insert city name here)!” Just acknowledging that he’s coherent enough to know where he is is enough for the audience to go wild and get into the show.

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It makes each individual feel as if they’re a part of something bigger. The same goes for any public speaking event. When an audience hears, “You’re all here because you care deeply about wildlife preservation,” it gives them a sense that they’re not just there to listen, but they’re there to connect with the like-minded people all around them.

2. Connect with their emotions

Speakers always try to get their audience emotionally involved in whatever topic they’re discussing. There are a variety of ways in which to do this, such as using statistics, stories, pictures or videos that really show the importance of the topic at hand.

For example, showing pictures of the aftermath of an accident related to drunk driving will certainly send a specific message to an audience of teenagers and young adults. While doing so might be emotionally nerve-racking to the crowd, it may be necessary to get your point across and engage them fully.

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3. Keep going back to the beginning

Revisit your theme throughout your presentation. Although you should give your audience the credit they deserve and know that they can follow along, linking back to your initial thesis can act as a subconscious reminder of why what you’re currently telling them is important.

On the other hand, if you simply mention your theme or the point of your speech at the beginning and never mention it again, it gives your audience the impression that it’s not really that important.

4. Link to your audience’s motivation

After you’ve acknowledged your audience’s common interests in being present, discuss their motivation for being there. Be specific. Using the previous example, if your audience clearly cares about wildlife preservation, discuss what can be done to help save endangered species’ from extinction.

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Don’t just give them cold, hard facts; use the facts to make a point that they can use to better themselves or the world in some way.

5. Entertain them

While not all speeches or presentations are meant to be entertaining in a comedic way, audiences will become thoroughly engaged in anecdotes that relate to the overall theme of the speech. We discussed appealing to emotions, and that’s exactly what a speaker sets out to do when he tells a story from his past or that of a well-known historical figure.

Speakers usually tell more than one story in order to show that the first one they told isn’t simply an anomaly, and that whatever outcome they’re attempting to prove will consistently reoccur, given certain circumstances.

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6. Appeal to loyalty

Just like the musician mentioning the town he’s playing in will get the audience ready to rock, speakers need to appeal to their audience’s loyalty to their country, company, product or cause. Show them how important it is that they’re present and listening to your speech by making your words hit home to each individual.

In doing so, the members of your audience will feel as if you’re speaking directly to them while you’re addressing the entire crowd.

7. Tell them the benefits of the presentation

Early on in your presentation, you should tell your audience exactly what they’ll learn, and exactly how they’ll learn it. Don’t expect them to listen if they don’t have clear-cut information to listen for. On the other hand, if they know what to listen for, they’ll be more apt to stay engaged throughout your entire presentation so they don’t miss anything.

Featured photo credit: Flickr via farm4.staticflickr.com

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