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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

More by this author

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 November 4, 2020

15 Simple Ways To Make Self Improvement That Will Change Your Life

15 Simple Ways To Make Self Improvement That Will Change Your Life

Self-improvement doesn’t have to be big mind-blowing changes; it can actually be simple steps to improve upon what you already have to get you where you want to be.  However, what you will need is consistency, determination and wiliness to try some things that will stretch and challenge you.

Rather than setting your sights way off into the future, which leaves you feeling like you’ll never make it, you can start following these simple and effective self-improvement steps today.  So if you want to make an immediate impact on your life and are willing to take action, then keep reading— you’ll going to love these!

1. Be willing to work hard.

As with anything in life, if you want something, you’ve got to work hard to get it.  This doesn’t mean you burn the candle at both ends, leaving you exhausted and leaving your personal life in ruins.  It merely means that when you want something badly enough, you’ll put in the time to get there.  Action is what’s important here and the more ‘inspired’ the action is, the better the results in the end.

2. Make sure you have friends who you can talk to.

Sharing the load is important as with any self-improvement. If you can communicate with others and get feedback on how you are doing then that’s great.  We all need ‘cheerleaders’ in our corner to keep us going when times get hard, but you also need to have people who will tell you how it is even when you don’t want to hear it.  So make sure you have a good support network around you, especially those people whose opinions you respect.

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3. Adapt to your circumstances rather than over-thinking them.

Sometimes, we can hit a hard period. Perhaps you’ve lost your job or your partner has left you.  Instead of over analyzing the situation, learn to adapt to your circumstances and accept them as they are.  It’s not about making your circumstances into some kind of a drama; remember, what you focus on expands which means you’ll get more of it.  You then don’t become your problems and you’ll feel a lot less burdened by them.

4. Ensure that you use your time wisely.

Time is of the essence, some might say; whilst others will say that time is an illusion.  One thing we do know is that you have one life on this planet, so how you use that time is of the utmost importance.  So how can you use your time wisely? Only you know how to do that, but look at how you currently spend your days: do you sit working all day, get home, eat and then sit slumped in front of the TV for the rest of the evening?  Your time on this earth is precious, so isn’t it time to make use of the time you have left? Try something new, go for a walk, learn a new language or meditate but make sure it’s something you absolutely love.

5. Always be consistent.

A wonderful way to self-improvement is to make changes to how you do things.  For example, with your friends, are you always the unreliable one who bows out of an arrangement just before it happens? Or are you someone who starts a new exercise routine and then stops doing it 3 weeks into it?  Whatever it is and whatever you do, always be consistent. When you make a commitment, stick to it. It will improve your life immeasurably you’ll feel more confident and happier with yourself, especially because you’ll know that whatever you tackle, you’ll be able to consistently do it!

6. Go and find your happy place.

No, I’m not saying “place” as in popping to your local bar or restaurant and gorging yourself on your favorite drinks or food. What I’m saying is to find out what you love to do, what makes you happy and go there.  Your happy place is a place where you find peace, where you lose yourself and feel contented.  Meditation is a great way to find your happy place; it brings you back to you and ensures that you are always living in the present moment.

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7. Make sure you embrace all your emotions.

In life you are going to find that it throws you some difficult challenges, sometimes it will bring out your fears and lead you into uncertainty, and other times it will be joyful.  It’s important to embrace all emotions that come up in your life, embrace them wholeheartedly and understand why they are there and then let them go.  Try not to dismiss or resist them because remember “what you resist, persists,” so embrace them each and every time.

8. Always be prepared to step out of your comfort zone.

The idea of stepping out of your comfort zone for some people can leave you paralyzed with fear; however for any changing in your life, your comfort zone will always have to be stepped out of.  It doesn’t have to be something big, like doing a sky-dive or something just as crazy. However, it’s worthwhile to change something that you’d once have feared, like going to the cinema on your own or eating at a sushi restaurant when the thought of trying raw fish which would normally mean you running for the hills.

So try something new—it doesn’t have to be wacky, but it has to challenge you!

9. Be on hand to help others.

Whether it’s helping a stranger on the street or a family member or a friend helping someone else either in their time of need, lending a helping hand is a wonderful and simple self-improvement to make.  Giving to others is not only beneficial to those you are helping but also to yourself; it can give you a sense of purpose, of contribution and also takes your mind of your own troubles and worries.

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10. Live in the present moment.

A wonderful self-improvement tool is to live in the present moment, to live in the now.  It is within this moment that you’ll appreciate all that you have and see the beauty in the simplest of things.  Being mindful of your current circumstances and bringing your mind back to where it belongs will bring about a happier way of life instead of constant worry or stressing about the past or future—both of which do not exist. Only the present moment exists. When you get used to living that way, you’ll never want to go back!

11. Learn something new.

There is nothing so liberating as learning something new; it can lift both your confidence and self-esteem and give you a great reason to meet new people.  If you continually top up your brain activity by learning something new all the time, you’ll feel on top of your game and want to share the knowledge you have learned. There is nothing quite so empowering as learning a new tool in life that can either improve your circle of friends or raise confidence levels—or both!

Reading is also a great way to help you learn something new:

12. Exercise daily.

This seems an obvious one, but exercise is so important not only to your health but also to your spirit.  We all know that after exercise, the world can feel a brighter and more positive place, so why don’t we do it more often?  Exercise isn’t about getting the perfect body or losing weight; it’s more about feeling good inside and out!  With a healthy body comes a healthy mind—so start something today. Even if it’s just a daily walk, it’s better than staying on that couch, again.

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13. Go to new places, travel a bit.

I’m not saying go fly off to some far away distant forgotten land—although you can if you so wish. It’s more about going to new places and experiencing life outside of your own back yard.  Too many of us stay in one place too often. We only see the same people, the same streets and do the same things each and every day.  If you want to improve your life, get out there and see the world and what it can offer.  You can start by going to a town or city you’ve never been to in your own country and checking out the architecture, the landscapes and the people.  Anything new is good, so get out there!

14. Listen to uplifting music and dance.

If there’s one thing that can really improve your life and get you excited about it, it’s listening to great uplifting music and dancing.  When was the last time you really let go?  Let it all hang loose and got into a piece of music and let yourself go?  Dancing, like exercise, makes you feel great. It releases all kinds of emotions and can make you feel unbelievably good.  Self-improvement isn’t all about the serious stuff; it can be something as simple as finding new music, music that inspires you and makes you dance and have fun!

15. Get up earlier than normal.

This is the last one, and it’s last because it’s one of those self-improvement tips that we all know is a good thing, yet we seem to avoid it at all costs!  If you think about it, the earliest part of the day is when your brain is most active because it’s been turned off for the last 7 hours or so.  So don’t you think it’s best to get all those things above done in the morning?  Things like exercise, meditation and dancing, which can all be done in the first part of the day.  Take it from me: this early morning stuff can really get your day started with a bang!

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Featured photo credit: Laura Chouette via unsplash.com

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