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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

Freelance writer

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Last Updated on October 18, 2018

50+ Best Motivational Quotes To Prepare You For Any Challenges In Life

50+ Best Motivational Quotes To Prepare You For Any Challenges In Life

Life is filled with highs and lows —happiness and struggles that will test your resilience and integrity, push you to overcome challenges and leave you with lessons that will make you even stronger on your way up.

It’s the way you feel and think about yourself, including your expectations and beliefs about what is possible to you, greatly determines everything that happens to you.

It all starts with your thoughts. When you change your thoughts, you transform the quality of your life. (Right, Nancy’s story is a typical example!)

Below is a list of the best motivational quotes to inspire you to start your day with a blast:

Quotes for self-assurance

1. Don’t downgrade your dream just to fit your reality, upgrade your conviction to match your destiny.

    2. You are braver than you believe, stronger than you seem and smarter than you think.

      3. You are confined only by the walls you build yourself.

        4. The man who has confidence in himself gains the confidence of others

          5. You attract what you are, not what you want. If you want great, then be great.

            6. It’s not who you are that holds you behind, it’s who you think your are not.

              Quotes about positivity

              7. Stop being afraid of what could go wrong and think of what could go right.

                8. You should never regret anything in life. If it’s good, it’s wonderful. If it’s bad, it is experience.

                  9. Falling down is an accident, staying down is a choice.

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                    10. If you have the power to make someone happy, do it. The world needs more of that.

                      11. Always believe that something wonderful is about to happen.

                        12. Don’t be afraid to give up the good and go for great.

                          13. Remember that life’s greatest lessons are usually learned from worst times and from the worst mistakes.

                            Quotes for work and success

                            14. Don’t talk, just act. Don’t say, just show. Don’t promise, just prove.

                              15. Never stop doing great just because someone doesn’t give you credit.

                                16. Discipline is doing what needs to be done, even if you don’t want to.

                                  17. Work while they sleep. Learn while they party. Save while they spend. Live like they dream.

                                    18. The key to success is to focus our conscious mind on things we desire, not things we fear.

                                      19. Never apologize for having high standards, people who really want to be in your life will rise to meet them.

                                        20. If it doesn’t challenge you, it won’t change you.

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                                          21. Never give up on a dream just because of the time it will take to accomplish it, time will pass anyway.

                                            22. Don’t fear failure. Fear being in the exact same place next year as you are today.

                                              23. A hill is just another opportunity to leave your competition behind.

                                                24. Don’t quit. You’re already in pain. You’re already hurt. Get a reward from it.

                                                  25. Hustle until you no longer need to introduce yourself.

                                                    26. You didn’t come this far only to come this far.

                                                      27. Be selective in your battles for sometimes peace is better than being right.

                                                        28 If we keep doing what we are doing, we’re going to keep getting what we’re getting.

                                                          29. You will never know your limits until you push yourself to them.

                                                            30. Do what you have to do until you can do what you want to do.

                                                              31. The man on top of the mountain didn’t fall there.

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                                                                32. If your dreams don’t scare you, they are not big enough.

                                                                  33. If you can’t handle stress, you won’t manage success.

                                                                    34. Don’t be pushed by your problems, be led by your dreams.

                                                                      35. Don’t mistake silence for weakness. Smart people don’t plan big moves out loud.

                                                                        36. Simplicity is the ultimate sophistication.

                                                                          37. Obsessed is the word the lazy use to describe dedicated.

                                                                            38. You become who you spend your time with.

                                                                              39. Be stubborn about your goals and flexible about your methods.

                                                                                40. Hard work beats talent when talent doesn’t work hard.

                                                                                  41. If you don’t build your dreams, someone else will hire you to build theirs.

                                                                                    42. Between stimulus and response is our greatest power –the freedom to choose.

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                                                                                      43. What comes easy won’t last, what lasts won’t come easy.

                                                                                        44. Don’t limit your challenges, challenge your limits.

                                                                                          45. Work until your idols become your rivals.

                                                                                            Quotes about money

                                                                                            46. Formal education will make you a living. Self-education will make you a fortune.

                                                                                              47. I create new enemies every day, it’s called business.

                                                                                                48. When you have a Million Dollar vision, don’t surround yourself with 1 cent minds.

                                                                                                  49. You can’t get rich thinking poor.

                                                                                                    50. Doing what is comfortable is rarely profitable.

                                                                                                      51. If you can count your money, work harder.

                                                                                                        If you find yourself feeling lost and frustrated, it’s never too late to change things up. Check out this guide:

                                                                                                        How to Start Over and Reboot Your Life When It Seems Too Late

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