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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 February 20, 2019

Building Relationships: 11 Rules for Self-Promotion

Building Relationships: 11 Rules for Self-Promotion

It’s no secret: to get ahead, you have to promote yourself. But for most people, the thought of promoting themselves is slightly shady. Images of glad-handing insurance salesmen or arrogant know-it-alls run through our heads.

The reality is that we all rely on some degree of self-promotion. Whether you want to start your own business, sell your novel to a publisher, start a group for your favorite hobby, or get a promotion at work, you need to make people aware of you and your abilities. While we’d like to think that our work speaks for itself, the fact is that usually our work needs us to put in some work to attract attention before our work can have anything to say.

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The good news is that self-promotion doesn’t have to be shady — in fact, real self-promotion almost by definition can’t be shady. The reason we get a bad feeling from overt self-promoters is that, most of the time, their efforts are insincere and their inauthenticity shows. It’s clear that they’re not building a relationship with us but only shooting for the quick payoff, whether that’s a sale, a vote, or a positive performance evaluation. They are pretending to be our friend to get something they want. And it shows.

Real self-promotion extends beyond the initial payoff — and may bypass the payoff entirely. It gives people a reason to associate themselves with us, for the long term. It’s genuine and authentic — more like making friends than selling something. Of course, if you’re on the make, that kind of authenticity makes you vulnerable, which is why the claims of false self-promoters ring hollow: they are hollow.

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The main rule of self-promotion is to be the best version of yourself. That is, of course, a little vague and is bound to mean something different to everyone. But here’s a few more specific things to keep in mind when working to get the word out about you and your work:

  1. Add value: What separates you from everyone else who does what you do is the particular value you bring to your clients, customers, or users. The same applies to your marketing efforts — people tune out if you’re just blathering on about how great you are. Instead, apply your particular expertise in demonstrable ways — by adding insightful points to a discussion or blog post comments, by creating entertaining and informative promotional spots, etc.
  2. Be confident: If you are telling people something that adds value to their lives, there’s no reason to feel as if you’re intruding. Stand up tall and show that you have faith in yourself, your abilities, and your work. After all, if you don’t have confidence in yourself, why should anyone else?
  3. Be sensitive to context: Always be aware of and responsive to the person or people you’re talking to right now, and the conditions in which you’re relating to them. You can’t just write a pitch and deliver it by rote every time you meet someone — you need to adapt to changing environments (are you at a cocktail party or a boardroom meeting?) and the knowledge levels and personalities of the people you’re talking to (are you describing your invention to an engineer or a stay-at-home dad?). The idea of talking points is useful here, because you have an outline to draw on but the level of “fleshing out” is based on where you are and to whom you’re talking.
  4. Be on target: Direct your message towards people who most need or want to hear it. You know how annoying it is to see someone plugging their unrelated website in a site’s comments or in your email inbox — if we only got legitimate offers for things we had an immediate need for, it wouldn’t be “spam”. Seek out and find the people who most need to know about what you do; for everyone else, a simple one-line description is sufficient.
  5. Have permission: Make sure the people you talk to have given you “permission” to promote yourself. That doesn’t mean you have to start every conversation with “Can I take a few minutes of your time to tell you about…” (though that’s not a bad opening in some circumstances); what it means is that you should make sure the other they’re receptive to your message. You don’t want to be bothered when you’re eating dinner with your family, in a hurry to get to work, or enjoying a movie, right? In those moments, you aren’t giving anyone permission to talk to you. Don’t interrupt other people or make your pitch when it’s inconvenient for them — that’s almost guaranteed to backfire.
  6. Don’t waste my time: If you’re on target, sensitive to context, and have permission, you’re halfway there on this one; but make sure to take no more time than you have to, and don’t beat around the bush. Once you have my attention, get to the point; be brief, be clear, and be passionate.
  7. Explain what you do: Have you ever come across a website or promotional brochure that looked like this:

    Advanced Enterprise Solutions Group has refactored the conceptualization of power shifts. We will rev up our ability to facilitate without depreciating our power to engineer. We believe we know that it is better to iterate macro-micro-cyber-transparently than to matrix wirelessly. A company that can syndicate fiercely will be able to e-enable faithfully.
    (With thanks to the Andrew Davidson’s Corporate Gibberish Generator)

    Some people (and corporations too) have a hard time telling people what they do. They hide behind jargon and generalities.

    Don’t you be one of them! Explain clearly what it is you actually do and, following #7 below, what value you offer your audience.

  8. Tell me what you offer me: Clearly explain what’s in it for your audience — why they should choose you over some other freelancer, business partner, employee, or product. How is what you have to say going to enrich their life or business?
  9. Tell me what you want from me: You’ve made your pitch, now what? What do you want your audience to do? Tell them to visit your site, read your book, but your product, set up a meeting with you, promote you, or whatever other action you want them to take. This is rule #1 for salespeople — be sure to ask for the sale. It applies just as well if what you’re selling is your talents, your capabilities, or your knowledge.
  10. Give me a reason to care: Be personal. Explain not only what you do but why what you do will make my life better. Both iPods and swapmeet knock-off mp3 players play music; but iPods make people’s lives better, by being easier to use, more stylish, and more likely to attract attention and make their users look “cool”. Part of this is showing that you care about the people you’re marketing to — responding to their questions, meeting and surpassing their needs, making them feel good about themselves. With few exceptions, this can’t be faked; even when it can, it’s far easier to just genuinely care.
  11. Maintain relationships: Self-promotion doesn’t end once you’ve delivered your message. Re-contact people periodically. Let people know what you’re up to, and show a genuine interest in what they’re up to. Don’t drop a connection because they don’t show any immediate need for whatever you do — you never know when they will, and you never know who they know who will. More importantly, these personal connections add more value than just a file full of prospective clients, customers, or voters.

Self-promotion that doesn’t follow these rules comes off as false, forced, and ultimately forgettable. Or worse, it leaves such a bad taste in the mouths of your victims that the opposite of promotion is achieved — people actively avoid working with you.

In the end, promoting yourself and your work isn’t that hard, as long as you a) are genuinely interested in other people and their needs and b) stay true to yourself and your work. Seek out the people who want — no, need — what you have to offer and put it in front of them. That’s not so hard, is it?

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Featured photo credit: rawpixel via unsplash.com

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