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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

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Last Updated on August 16, 2018

10 Ways To Step Out Of Your Comfort Zone And Enjoy Taking Risks

10 Ways To Step Out Of Your Comfort Zone And Enjoy Taking Risks

The ability to take risks by stepping outside your comfort zone is the primary way by which we grow. But we are often afraid to take that first step.

In truth, comfort zones are not really about comfort, they are about fear. Break the chains of fear to get outside. Once you do, you will learn to enjoy the process of taking risks and growing in the process.

Here are 10 ways to help you step out of your comfort zone and get closer to success:

1. Become aware of what’s outside of your comfort zone

What are the things that you believe are worth doing but are afraid of doing yourself because of the potential for disappointment or failure?

Draw a circle and write those things down outside the circle. This process will not only allow you to clearly identify your discomforts, but your comforts. Write identified comforts inside the circle.

2. Become clear about what you are aiming to overcome

Take the list of discomforts and go deeper. Remember, the primary emotion you are trying to overcome is fear.

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How does this fear apply uniquely to each situation? Be very specific.

Are you afraid of walking up to people and introducing yourself in social situations? Why? Is it because you are insecure about the sound of your voice? Are you insecure about your looks?

Or, are you afraid of being ignored?

3. Get comfortable with discomfort

One way to get outside of your comfort zone is to literally expand it. Make it a goal to avoid running away from discomfort.

Let’s stay with the theme of meeting people in social settings. If you start feeling a little panicked when talking to someone you’ve just met, try to stay with it a little longer than you normally would before retreating to comfort. If you stay long enough and practice often enough, it will start to become less uncomfortable.

4. See failure as a teacher

Many of us are so afraid of failure that we would rather do nothing than take a shot at our dreams.

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Begin to treat failure as a teacher. What did you learn from the experience? How can you take that lesson to your next adventure to increase your chance of success?

Many highly successful people failed plenty of times before they succeeded. Here’re some examples:

10 Famous Failures to Success Stories That Will Inspire You to Carry On

5. Take baby steps

Don’t try to jump outside your comfort zone, you will likely become overwhelmed and jump right back in.

Take small steps toward the fear you are trying to overcome. If you want to do public speaking, start by taking every opportunity to speak to small groups of people. You can even practice with family and friends.

Take a look at this article on how you can start taking baby steps:

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The Number One Secret to Life Success: Baby Steps

6. Hang out with risk takers

There is no substitute for this step. If you want to become better at something, you must start hanging out with the people who are doing what you want to do and start emulating them. (Here’re 8 Reasons Why Risk Takers Are More Likely To Be Successful).

Almost inevitably, their influence will start have an effect on your behavior.

7. Be honest with yourself when you are trying to make excuses

Don’t say “Oh, I just don’t have the time for this right now.” Instead, be honest and say “I am afraid to do this.”

Don’t make excuses, just be honest. You will be in a better place to confront what is truly bothering you and increase your chance of moving forward.

8. Identify how stepping out will benefit you

What will the ability to engage in public speaking do for your personal and professional growth? Keep these potential benefits in mind as motivations to push through fear.

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9. Don’t take yourself too seriously

Learn to laugh at yourself when you make mistakes. Risk taking will inevitably involve failure and setbacks that will sometimes make you look foolish to others. Be happy to roll with the punches when others poke fun.

If you aren’t convinced yet, check out these 6 Reasons Not to Take Life So Seriously.

10. Focus on the fun

Enjoy the process of stepping outside your safe boundaries. Enjoy the fun of discovering things about yourself that you may not have been aware of previously.

Featured photo credit: Unsplash via unsplash.com

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