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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 July 3, 2020

30 Small Habits To Lead A More Peaceful Life

30 Small Habits To Lead A More Peaceful Life

In today’s world, true peace must come from within us and our own actions. Here are 30 small things you can do on a regular basis to increase your overall sense of harmony, peace, and well-being:

1. Don’t go to every fight you’re invited to

Particularly when you’re around those who thrive on chaos, be willing to decline the invitation to join in on the drama.

2. Focus on your breath

Throughout the day, stop to take a few deep breaths. Keep stress at bay with techniques such as “square breathing.” Breathe in for four counts, hold for four counts, then out for four counts, and hold again for four counts. Repeat this cycle four times.

3. Get organized and purge old items

A cluttered space often creates a cluttered spirit. Take the time to get rid of anything you haven’t used in a year and invest in organizational systems that help you sustain a level of neatness.

4. Stop yourself from being judgmental

Whenever you are tempted to have an opinion about someone else’s life, check your intentions. Judging others creates and promotes negative energy.

5. Say ‘thank you’ early and often

Start and end each day with an attitude of gratitude. Look for opportunities in your daily routine and interactions to express appreciation.

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6. Smile more

Even if you have to “fake it until you make it,” there are many scientific benefits of smiling and laughing. Also, pay attention to your facial expression when you are doing neutral activities such as driving and walking. Turn that frown upside down!

7. Don’t worry about the future

As difficult as this sounds, there is a direct connection between staying in the present and living a more peaceful life. You cannot control the future. As the old proverb goes, “Worry is like a rocking chair. It gives you something to do, but it won’t get you anywhere.” Practice gently bringing your thoughts back to the present.

8. Eat real food

The closer the food is to the state from which it came from the earth, the better you will feel in eating it. Choose foods that grew from a plant over food that was made in a plant.

9. Choose being happy over being right

Too often, we sacrifice inner peace in order to make a point. It’s rarely worth it.

10. Keep technology out of the bedroom

Many studies, such as one conducted by Brigham and Women’s Hospital, have connected blue light of electronic devices before bed to adverse sleep and overall health. To make matters worse, many people report that they cannot resist checking email and social media when their cell phone is in reach of their bed, regardless of the time.

11. Make use of filtering features on social media

You may not want to “unfriend” someone completely, however you can choose whether you want to follow their posts and/or the sources of information that they share.

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12. Get comfortable with silence

When you picture someone who is the ultimate state of peace, typically they aren’t talking.

13. Listen to understand, not to respond

So often in conversations, we use our ears to give us cues about when it is our turn to say what we want to say. Practice active listening, ask questions, process, then speak.

14. Put your troubles in a bubble

Whenever you start to feel anxious, visualize the situation being wrapped in a bubble and then picture that sphere floating away.

15. Speak more slowly

Often a lack of peace manifests itself in fast or clipped speech. Take a breath, slow down, and let your thoughtful consideration drive your words.

16. Don’t procrastinate

Nothing adds stress to our lives like waiting until the last minute.

17. Buy a coloring book

Mandala coloring books for adults are becoming more popular because of their connection to creating inner peace.

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18. Prioritize yourself

You are the only person who you are guaranteed to live with 24 hours a day for the rest of your life.

19. Forgive others

Holding a grudge is hurting you exponentially more than anyone else. Let it go.

20. Check your expectations

Presumption often leads to drama. Remember the old saying, “Expectations are premeditated resentments.”

21. Engage in active play

Let your inner child come out and have some fun. Jump, dance, play, and pretend!

22. Stop criticizing yourself

The world is a hard enough place with more than enough critics. Your life is not served well by being one of them.

23. Focus your energy and attention on what you want

Thoughts, words, and actions all create energy. Energy attracts like energy. Put out what you want to get back.

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24. Assign yourself “complaint free” days.

Make a conscious decision not to complain about anything for a whole day. It might be harder than you think and the awareness will stick with you.

25. Surround yourself with people you truly enjoy being in the company of

Personalities tend to be contagious, and not everyone’s is worth catching. Be judicious in your choices.

26. Manage your money

Financial concerns rank top on the list of what causes people stress. Take the time each month to do a budget, calculate what you actually spend and sanity check that against the money you have coming in.

27. Stop trying to control everything

Not only is your inner control freak sabotaging your sense of peace, it is also likely getting in the way of external relationships as well.

28. Practice affirmations

Repeat positive phrases that depict the life and qualities you want to attract. It may not come naturally to you, but it works.

29. Get up before sunrise

Personally witnessing the dawn brings a unique sense of awe and appreciation for life.

30. Be yourself

Nothing creates more inner discord than trying to be something other than who we really are. Authenticity breeds happiness.

Featured photo credit: man watching sunrise via stokpic.com

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