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9 Things Only People With Albinism Would Understand

9 Things Only People With Albinism Would Understand
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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 July 20, 2021

How to Overcome the Fear of Public Speaking (A Step-by-Step Guide)

How to Overcome the Fear of Public Speaking (A Step-by-Step Guide)
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You’re standing behind the curtain, just about to make your way on stage to face the many faces half-shrouded in darkness in front of you. As you move towards the spotlight, your body starts to feel heavier with each step. A familiar thump echoes throughout your body – your heartbeat has gone off the charts.

Don’t worry, you’re not the only one with glossophobia(also known as speech anxiety or the fear of speaking to large crowds). Sometimes, the anxiety happens long before you even stand on stage.

Your body’s defence mechanism responds by causing a part of your brain to release adrenaline into your blood – the same chemical that gets released as if you were being chased by a lion.

Here’s a step-by-step guide to help you overcome your fear of public speaking:

1. Prepare yourself mentally and physically

According to experts, we’re built to display anxiety and to recognize it in others. If your body and mind are anxious, your audience will notice. Hence, it’s important to prepare yourself before the big show so that you arrive on stage confident, collected and ready.

“Your outside world is a reflection of your inside world. What goes on in the inside, shows on the outside.” – Bob Proctor

Exercising lightly before a presentation helps get your blood circulating and sends oxygen to the brain. Mental exercises, on the other hand, can help calm the mind and nerves. Here are some useful ways to calm your racing heart when you start to feel the butterflies in your stomach:

Warming up

If you’re nervous, chances are your body will feel the same way. Your body gets tense, your muscles feel tight or you’re breaking in cold sweat. The audience will notice you are nervous.

If you observe that this is exactly what is happening to you minutes before a speech, do a couple of stretches to loosen and relax your body. It’s better to warm up before every speech as it helps to increase the functional potential of the body as a whole. Not only that, it increases muscle efficiency, improves reaction time and your movements.

Here are some exercises to loosen up your body before show time:

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  1. Neck and shoulder rolls – This helps relieve upper body muscle tension and pressure as the rolls focus on rotating the head and shoulders, loosening the muscle. Stress and anxiety can make us rigid within this area which can make you feel agitated, especially when standing.
  2. Arm stretches – We often use this part of our muscles during a speech or presentation through our hand gestures and movements. Stretching these muscles can reduce arm fatigue, loosen you up and improve your body language range.
  3. Waist twists – Place your hands on your hips and rotate your waist in a circular motion. This exercise focuses on loosening the abdominal and lower back regions which is essential as it can cause discomfort and pain, further amplifying any anxieties you may experience.

Stay hydrated

Ever felt parched seconds before speaking? And then coming up on stage sounding raspy and scratchy in front of the audience? This happens because the adrenaline from stage fright causes your mouth to feel dried out.

To prevent all that, it’s essential we stay adequately hydrated before a speech. A sip of water will do the trick. However, do drink in moderation so that you won’t need to go to the bathroom constantly.

Try to avoid sugary beverages and caffeine, since it’s a diuretic – meaning you’ll feel thirstier. It will also amplify your anxiety which prevents you from speaking smoothly.

Meditate

Meditation is well-known as a powerful tool to calm the mind. ABC’s Dan Harris, co-anchor of Nightline and Good Morning America weekend and author of the book titled10% Happier , recommends that meditation can help individuals to feel significantly calmer, faster.

Meditation is like a workout for your mind. It gives you the strength and focus to filter out the negativity and distractions with words of encouragement, confidence and strength.

Mindfulness meditation, in particular, is a popular method to calm yourself before going up on the big stage. The practice involves sitting comfortably, focusing on your breathing and then bringing your mind’s attention to the present without drifting into concerns about the past or future – which likely includes floundering on stage.

Here’s a nice example of guided meditation before public speaking:

2. Focus on your goal

One thing people with a fear of public speaking have in common is focusing too much on themselves and the possibility of failure.

Do I look funny? What if I can’t remember what to say? Do I look stupid? Will people listen to me? Does anyone care about what I’m talking about?’

Instead of thinking this way, shift your attention to your one true purpose – contributing something of value to your audience.

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Decide on the progress you’d like your audience to make after your presentation. Notice their movements and expressions to adapt your speech to ensure that they are having a good time to leave the room as better people.

If your own focus isn’t beneficial and what it should be when you’re speaking, then shift it to what does. This is also key to establishing trust during your presentation as the audience can clearly see that you have their interests at heart.[1]

3. Convert negativity to positivity

There are two sides constantly battling inside of us – one is filled with strength and courage while the other is doubt and insecurities. Which one will you feed?

‘What if I mess up this speech? What if I’m not funny enough? What if I forget what to say?’

It’s no wonder why many of us are uncomfortable giving a presentation. All we do is bring ourselves down before we got a chance to prove ourselves. This is also known as a self-fulfilling prophecy – a belief that comes true because we are acting as if it already is. If you think you’re incompetent, then it will eventually become true.

Motivational coaches tout that positive mantras and affirmations tend to boost your confidents for the moments that matter most. Say to yourself: “I’ll ace this speech and I can do it!”

Take advantage of your adrenaline rush to encourage positive outcome rather than thinking of the negative ‘what ifs’.

Here’s a video of Psychologist Kelly McGonigal who encourages her audience to turn stress into something positive as well as provide methods on how to cope with it:

4. Understand your content

Knowing your content at your fingertips helps reduce your anxiety because there is one less thing to worry about. One way to get there is to practice numerous times before your actual speech.

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However, memorizing your script word-for-word is not encouraged. You can end up freezing should you forget something. You’ll also risk sounding unnatural and less approachable.

“No amount of reading or memorizing will make you successful in life. It is the understanding and the application of wise thought that counts.” – Bob Proctor

Many people unconsciously make the mistake of reading from their slides or memorizing their script word-for-word without understanding their content – a definite way to stress themselves out.

Understanding your speech flow and content makes it easier for you to convert ideas and concepts into your own words which you can then clearly explain to others in a conversational manner. Designing your slides to include text prompts is also an easy hack to ensure you get to quickly recall your flow when your mind goes blank.[2]

One way to understand is to memorize the over-arching concepts or ideas in your pitch. It helps you speak more naturally and let your personality shine through. It’s almost like taking your audience on a journey with a few key milestones.

5. Practice makes perfect

Like most people, many of us are not naturally attuned to public speaking. Rarely do individuals walk up to a large audience and present flawlessly without any research and preparation.

In fact, some of the top presenters make it look easy during showtime because they have spent countless hours behind-the-scenes in deep practice. Even great speakers like the late John F. Kennedy would spend months preparing his speech beforehand.

Public speaking, like any other skill, requires practice – whether it be practicing your speech countless of times in front of a mirror or making notes. As the saying goes, practice makes perfect!

6. Be authentic

There’s nothing wrong with feeling stressed before going up to speak in front of an audience.

Many people fear public speaking because they fear others will judge them for showing their true, vulnerable self. However, vulnerability can sometimes help you come across as more authentic and relatable as a speaker.

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Drop the pretence of trying to act or speak like someone else and you’ll find that it’s worth the risk. You become more genuine, flexible and spontaneous, which makes it easier to handle unpredictable situations – whether it’s getting tough questions from the crowd or experiencing an unexpected technical difficulty.

To find out your authentic style of speaking is easy. Just pick a topic or issue you are passionate about and discuss this like you normally would with a close family or friend. It is like having a conversation with someone in a personal one-to-one setting. A great way to do this on stage is to select a random audience member(with a hopefully calming face) and speak to a single person at a time during your speech. You’ll find that it’s easier trying to connect to one person at a time than a whole room.

With that said, being comfortable enough to be yourself in front of others may take a little time and some experience, depending how comfortable you are with being yourself in front of others. But once you embrace it, stage fright will not be as intimidating as you initially thought.

Presenters like Barack Obama are a prime example of a genuine and passionate speaker:

7. Post speech evaluation

Last but not the least, if you’ve done public speaking and have been scarred from a bad experience, try seeing it as a lesson learned to improve yourself as a speaker.

Don’t beat yourself up after a presentation

We are the hardest on ourselves and it’s good to be. But when you finish delivering your speech or presentation, give yourself some recognition and a pat on the back.

You managed to finish whatever you had to do and did not give up. You did not let your fears and insecurities get to you. Take a little more pride in your work and believe in yourself.

Improve your next speech

As mentioned before, practice does make perfect. If you want to improve your public speaking skills, try asking someone to film you during a speech or presentation. Afterwards, watch and observe what you can do to improve yourself next time.

Here are some questions you can ask yourself after every speech:

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  • How did I do?
  • Are there any areas for improvement?
  • Did I sound or look stressed?
  • Did I stumble on my words? Why?
  • Was I saying “um” too often?
  • How was the flow of the speech?

Write everything you observed down and keep practicing and improving. In time, you’ll be able to better manage your fears of public speaking and appear more confident when it counts.

If you want even more tips about public speaking or delivering a great presentation, check out these articles too:

Reference

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