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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 December 3, 2019

10 Life Lessons You’d Better Learn Early on in Life

10 Life Lessons You’d Better Learn Early on in Life

There are so many lessons I wish I had learned while I was young enough to appreciate and apply them. The thing with wisdom, and often with life lessons in general, is that they’re learned in retrospect, long after we needed them. The good news is that other people can benefit from our experiences and the lessons we’ve learned.

Here’re 10 important life lessons you should learn early on:

1. Money Will Never Solve Your Real Problems

Money is a tool; a commodity that buys you necessities and some nice “wants,” but it is not the panacea to your problems.

There are a great many people who are living on very little, yet have wonderfully full and happy lives… and there are sadly a great many people are living on quite a lot, yet have terribly miserable lives.

Money can buy a nice home, a great car, fabulous shoes, even a bit of security and some creature comforts, but it cannot fix a broken relationship, or cure loneliness, and the “happiness” it brings is only fleeting and not the kind that really and truly matters. Happiness is not for sale. If you’re expecting the “stuff” you can buy to “make it better,” you will never be happy.

2. Pace Yourself

Often when we’re young, just beginning our adult journey we feel as though we have to do everything at once. We need to decide everything, plan out our lives, experience everything, get to the top, find true love, figure out our life’s purpose, and do it all at the same time.

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Slow down—don’t rush into things. Let your life unfold. Wait a bit to see where it takes you, and take time to weigh your options. Enjoy every bite of food, take time to look around you, let the other person finish their side of the conversation. Allow yourself time to think, to mull a bit.

Taking action is critical. Working towards your goals and making plans for the future is commendable and often very useful, but rushing full-speed ahead towards anything is a one-way ticket to burnout and a good way to miss your life as it passes you by.

3. You Can’t Please Everyone

“I don’t know the secret to success, but the secret to failure is trying to please everyone” – Bill Cosby.

You don’t need everyone to agree with you or even like you. It’s human nature to want to belong, to be liked, respected and valued, but not at the expense of your integrity and happiness. Other people cannot give you the validation you seek. That has to come from inside.

Speak up, stick to your guns, assert yourself when you need to, demand respect, stay true to your values.

4. Your Health Is Your Most Valuable Asset

Health is an invaluable treasure—always appreciate, nurture, and protect it. Good health is often wasted on the young before they have a chance to appreciate it for what it’s worth.

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We tend to take our good health for granted, because it’s just there. We don’t have to worry about it, so we don’t really pay attention to it… until we have to.

Heart disease, bone density, stroke, many cancers—the list of many largely preventable diseases is long, so take care of your health now, or you’ll regret it later on.

5. You Don’t Always Get What You Want

“Life is what happens while you’re busy making other plans.” – John Lennon

No matter how carefully you plan and how hard you work, sometimes things just don’t work out the way you want them to… and that’s okay.

We have all of these expectations; predetermined visions of what our “ideal” life will look like, but all too often, that’s not the reality of the life we end up with. Sometimes our dreams fail and sometimes we just change our minds mid-course. Sometimes we have to flop to find the right course and sometimes we just have to try a few things before we find the right direction.

6. It’s Not All About You

You are not the epicenter of the universe. It’s very difficult to view the world from a perspective outside of your own, since we are always so focused on what’s happening in our own lives. What do I have to do today? What will this mean for me, for my career, for my life? What do I want?

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It’s normal to be intensely aware of everything that’s going on in your own life, but you need to pay as much attention to what’s happening around you, and how things affect other people in the world as you do to your own life. It helps to keep things in perspective.

7. There’s No Shame in Not Knowing

No one has it all figured out. Nobody has all the answers. There’s no shame in saying “I don’t know.” Pretending to be perfect doesn’t make you perfect. It just makes you neurotic to keep up the pretense of manufactured perfection.

We have this idea that there is some kind of stigma or shame in admitting our limitations or uncertainly, but we can’t possibly know everything. We all make mistakes and mess up occasionally. We learn as we go, that’s life.

Besides—nobody likes a know-it-all. A little vulnerability makes you human and oh so much more relatable.

8. Love Is More Than a Feeling; It’s a Choice

That burst of initial exhilaration, pulse quickening love and passion does not last long. But that doesn’t mean long-lasting love is not possible.

Love is not just a feeling; it’s a choice that you make every day. We have to choose to let annoyances pass, to forgive, to be kind, to respect, to support, to be faithful.

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Relationships take work. Sometimes it’s easy and sometimes it’s incredibly hard. It is up to us to choose how we want to act, think and speak in a relationship.

9. Perspective Is a Beautiful Thing

Typically, when we’re worried or upset, it’s because we’ve lost perspective. Everything that is happening in our lives seems so big, so important, so do or die, but in the grand picture, this single hiccup often means next to nothing.

The fight we’re having, the job we didn’t get, the real or imagined slight, the unexpected need to shift course, the thing we wanted, but didn’t get. Most of it won’t matter 20, 30, 40 years from now. It’s hard to see long term when all you know is short term, but unless it’s life-threatening, let it go, and move on.

10. Don’t Take Anything for Granted

We often don’t appreciate what we have until it’s gone: that includes your health, your family and friends, your job, the money you have or think you will have tomorrow.

When you’re young, it seems that your parents will always be there, but they won’t. You think you have plenty of time to get back in touch with your old friends or spend time with new ones, but you don’t. You have the money to spend, or you think you’ll have it next month, but you might not.

Nothing in your life is not guaranteed to be there tomorrow, including those you love.

This is a hard life lesson to learn, but it may be the most important of all: Life can change in an instant. Make sure you appreciate what you have, while you still have it.

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Featured photo credit: Ben Eaton via unsplash.com

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