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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 June 23, 2019

20 Things People Regret the Most Before They Die

20 Things People Regret the Most Before They Die

Close your eyes and imagine that you’re at your own funeral—a bit morbid I know, but there’s a reason for it. Now think about what you’d like people to say about you. What kind of a life do you want to lead? People die with all kinds of regrets. Don’t be one of them.

1. I wish I’d cared less about what other people think.

It’s only when you realise how little other people are really thinking of you (in a negative sense) that you realise how much time you spent caring and wasting energy worrying about this.

2. I wish I had accomplished more.

You don’t have to have won an Oscar, built up a business or run a marathon, but having small personal accomplishments is important.

3. I wish I had told __ how I truly felt.

Even if the “one” doesn’t exist, telling someone how you truly feel will always save you from that gut wrenching”but what if…” feeling that could linger for life if you stay quiet.

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4. I wish I had stood up for myself more.

Sometimes, it’s too easy to think that if you go all out to please everyone you’ll be liked more or your partner won’t run off with anyone else. I think age probably teaches us to be nice but not at the expense of our own happiness.

5. I wish I had followed my passion in life.

It’s so easy to be seduced by a stable salary, a solid routine and a comfortable life, but at what expense?

6. I wish our last conversation hadn’t been an argument.

Life is short, and you never really know when the last time you speak to someone you love will be. It’s these moments that really stay clear in peoples’ minds.

7. I wish I had let my children grow up to be who they wanted to be.

The realisation that love, compassion and empathy are so much more important than clashes in values or belief systems can hit home hard.

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8. I wish I had lived more in the moment.

Watching children grow up makes you realise how short-lived and precious time really is, and as we age, many of us live less and less in the present.

9. I wish I had worked less.

There’s always a desire to have loosened up a bit more with this one and the realisation that financial success or career accomplishment doesn’t necessarily equal a fulfilled life.

10. I wish I had traveled more.

It can be done at any age, with kids or not but many talk themselves out of it for all kinds of reasons such as lack of money, mortgage, children, etc. When there’s a regret, you know it could have been possible at some stage.

11. I wish I had trusted my gut rather than listening to everyone else.

Making your own decisions and feeling confident in the decisions you make gives us fulfilment and joy from life. Going against your gut only breeds resentment and bitterness.

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12. I wish I’d taken better care of myself.

Premature health problems or ageing always makes you wonder if you’d eaten healthier, exercised more and been less stressed, would you be where you are today?

13. I wish I’d taken more risks.

Everyone has their own idea of what’s risky, but you know when you’re living too much in your comfort zone. In hindsight, some people feel they missed out on a lot of adventure life has to offer.

14. I wish I’d had more time.

Many people say time speeds up as we age. The six weeks of summer holidays we had as kids certainly seemed to last a lifetime. If time speeds up, then it’s even more important to make the most of every moment.

15. I wish I hadn’t worried so much.

If you’ve ever kept a diary and looked back, you’ll probably wonder why you ever got so worked up over X.

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16. I wish I’d appreciated ___ more.

The consequences of taking people for granted are always hard to deal with.

17. I wish I’d spent more time with my family.

Some people get caught up with work, move to other parts of the world, grow old with grudges against family members only to realise their priorities were in the wrong place.

18. I wish I hadn’t taken myself so seriously.

Life is just more fun when you can laugh at yourself.

19. I wish I’d done more for other people.

Doing things for others just makes life more meaningful.

20. I wish I could have felt happier.

The realisation that happiness is a state of mind that you can control sometimes doesn’t occur to people until it’s too late.

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