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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 September 18, 2020

13 Helping Points When Things Don’t Go Your Way

13 Helping Points When Things Don’t Go Your Way

For the original article by Celestine: 13 Helping Points When Things Don’t Go Your Way

“We all have problems. The way we solve them is what makes us different.” ~Unknown

“It’s not stress that kills us, it is our reaction to it.” – Hans Selye

Have you ever experienced moments when things just don’t go your way? For example, losing your keys, accidentally spilling your drink, waking up late, missing your buses/trains, forgetting to bring your things, and so on?

You’re not alone. All of us, myself included, experience times when things don’t go as we expect.

Here is my guide on how to deal with daily setbacks.

1. Take a step back and evaluate

When something bad happens, take a step back and evaluate the situation. Some questions to ask yourself:

  1. What is the problem?
  2. Are you the only person facing this problem in the world today?
  3. How does this problem look like at an individual level? A national level? On a global scale?
  4. What’s the worst possible thing that can happen to you as a result of this?
  5. How is it going to impact your life in the next 1 year? 5 years? 10 years?

Doing this exercise is not to undermine the problem or disclaiming responsibility, but to consider different perspectives, so you can adopt the best approach for it. Most problems we encounter daily may seem like huge issues when they crop up, but most, if not all, don’t have much impact in our life beyond that day.

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2. Vent if you have to, but don’t linger on the problem

If you feel very frustrated and need to let off some steam, go ahead and do that. Talk to a friend, complain, crib about it, or scream at the top of your lungs if it makes you happy.

At the same time, don’t get caught up with venting. While venting may temporarily relieve yourself, it’s not going to solve the problem ultimately. You don’t want to be an energy vampire.

Vent if there’s a need to, but do it for 15 to 20 minutes. Then move on.

3. Realize there are others out there facing this too

Even though the situation may be frustrating, you’re not alone. Remember there are almost 7 billion people in the world today, and chances are that other people have faced the same thing before too. Knowing it’s not just you helps you to get out of a self-victimizing mindset.

4. Process your thoughts/emotions

Process your thoughts/emotions with any of the four methods:

  1. Journal. Write your unhappiness in a private diary or in your blog. It doesn’t have to be formal at all – it can be a brain dump on rough paper or new word document. Delete after you are done.
  2. Audio taping. Record yourself as you talk out what’s on your mind. Tools include tape recorder, your PC (Audacity is a freeware for recording/editing audio) and your mobile (most mobiles today have audio recording functions). You can even use your voice mail for this. Just talking helps you to gain awareness of your emotions. After recording, play back and listen to what you said. You might find it quite revealing.
  3. Meditation. At its simplest form, meditation is just sitting/lying still and observing your reality as it is – including your thoughts and emotions. Some think that it involves some complex mambo-jumbo, but it doesn’t.
  4. Talking to someone. Talking about it with someone helps you work through the issue. It also gets you an alternate viewpoint and consider it from a different angle.

5. Acknowledge your thoughts

Don’t resist your thoughts, but acknowledge them. This includes both positive and negative thoughts.

By acknowledging, I mean recognizing these thoughts exist. So if say, you have a thought that says, “Wow, I’m so stupid!”, acknowledge that. If you have a thought that says, “I can’t believe this is happening to me again”, acknowledge that as well.

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Know that acknowledging the thoughts doesn’t mean you agree with them. It’s simply recognizing the existence of said thoughts so that you can stop resisting yourself and focus on the situation on hand.

6. Give yourself a break

If you’re very stressed out by the situation, and the problem is not time sensitive, then give yourself a break. Take a walk, listen to some music, watch a movie, or get some sleep. When you’re done, you should feel a lot more revitalized to deal with the situation.

7. Uncover what you’re really upset about

A lot of times, the anger we feel isn’t about the world. You may start off feeling angry at someone or something, but at the depth of it, it’s anger toward yourself.

Uncover the root of your anger. I have written a five part anger management series on how to permanently overcome anger.

After that, ask yourself: How can you improve the situation? Go to Step #9, where you define your actionable steps. Our anger comes from not having control on the situation. Sitting there and feeling infuriated is not going to change the situation. The more action we take, the more we will regain control over the situation, the better we will feel.

8. See this as an obstacle to be overcome

As Helen Keller once said,

“Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.”

Whatever you’re facing right now, see it as an obstacle to be overcome. In every worthy endeavor, there’ll always be countless obstacles that emerge along the way. These obstacles are what separate the people who make it, and those who don’t. If you’re able to push through and overcome them, you’ll emerge a stronger person than before. It’ll be harder for anything to get you down in the future.

9. Analyze the situation – Focus on actionable steps

In every setback, there are going to be things that can’t be reversed since they have already occurred. You want to focus on things that can still be changed (salvageable) vs. things that have already happened and can’t be changed. The only time the situation changes is when you take steps to improve it. Rather than cry over spilt milk, work through your situation:

  1. What’s the situation?
  2. What’s stressing you about this situation?
  3. What are the next steps that’ll help you resolve them?
  4. Take action on your next steps!

After you have identified your next steps, act on them. The key here is to focus on the actionable steps, not the inactionable steps. It’s about regaining control over the situation through direct action.

10. Identify how it occurred (so it won’t occur again next time)

A lot of times we react to our problems. The problem occurs, and we try to make the best out of what has happened within the context. While developing a healthy coping mechanism is important (which is what the other helping points are on), it’s also equally important, if not more, to understand how the problem arose. This way, you can work on preventing it from taking place next time, vs. dealing reactively with it.

Most of us probably think the problem is outside of our control, but reality is most of the times it’s fully preventable. It’s just a matter of how much responsibility you take over the problem.

For example, for someone who can’t get a cab for work in the morning, he/she may see the problem as a lack of cabs in the country, or bad luck. However, if you trace to the root of the problem, it’s probably more to do with (a) Having unrealistic expectations of the length of time to get a cab. He/she should budget more time for waiting for a cab next time. (b) Oversleeping, because he/she was too tired from working late the previous day. He/she should allocate enough time for rest next time. He/she should also pick up better time management skills, so as to finish work in lesser time.

11. Realize the situation can be a lot worse

No matter how bad the situation is, it can always be much worse. A plus point vs. negative point analysis will help you realize that.

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12. Do your best, but don’t kill yourself over it

No matter how bad your situation may seem, do your best, but don’t kill yourself over it. Life is too beautiful to worry so much over daily issues. Take a step back (#1), give yourself a break if you need to (#6), and do what you can within your means (#9). Everything else will unfold accordingly. Worrying too much about the outcome isn’t going to change things or make your life any better.

13. Pick out the learning points from the encounter

There’s something to learn from every encounter. What have you learned from this situation? What lessons have you taken away?

After you identify your learning points, think about how you’re going to apply them moving forward. With this, you’ve clearly gained something from this encounter. You’ve walked away a stronger, wiser, better person, with more life lessons to draw from in the future.

Get the manifesto version of this article: [Manifesto] What To Do When Things Don’t Go Your Way

Featured photo credit: Alice Donovan Rouse via unsplash.com

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