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11 Things To Remember If You Love A Person With Albinism

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11 Things To Remember If You Love A Person With Albinism

Mashawna Thompson’s daughter, Lyra, came into the world with usually pale skin and a full head of nearly-transparent hair.  By all measures, she was beautiful.  But then Mashawna experienced that moment that all new parents feared–the doctors suspected that something was “wrong.” Ultimately, baby Lyra was diagnosed with albinism.

Many people are unfamiliar with the term “albinism,” but nearly everyone has heard of “albinos.” And that is only the tip of the iceberg of misunderstandings.

While Lyra, who is now a thriving 9-year-old, has some physical challenges due to her condition — she has poor eyesight, light sensitivity, and sensitive skin — the greatest obstacle that this family has faced has been the plethora of misunderstandings that people have about albinism.

According to Mashawna, who blogs at Parent of a Child With Albinism, “It really bothers me when people just stare, which happens A LOT. Fortunately, most of the time Lyra can’t see well enough to see them staring at her, so it doesn’t bother her as much. I would much rather people ASK about it than just stare.”

She even had a t-shirt made for Lyra that says “I was born with it” on the front and “Yes, it’s real” on the back. “By far, the most common question we hear is ‘Is that her real hair color?’ ” explains Mashawna.

In addition to stares and questions about Lyra’s hair color, Mashawna has observed the negative stereotypes in the media and the dehumanizing connotations associated with the term “albino.” Mashawna says that, “On a few occasions, other kids have called Lyra a vampire or said ‘Are you a vampire?'”

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Recently, Judy Silny wrote an article about the unique challenges faced by people who have ADD.  She emphasized that understanding a person’s challenges can help you to be more patient, compassionate, and tolerant.

Unfortunately, Mashawna’s family’s experiences are common, and albinism is at least as misunderstood as ADD, and loving a person with this condition does require you to understand the challenges that they face due to their albinism. Here are some things to remember if you love a person with albinism:

1.  They wish that you would be careful about using the term “albino.”

According to an informational bulletin published by the National Organization for Albinism and Hypopigmentation  (NOAH), the use of the term “albino” is offensive to some people with albanism.  Referring to these people as “albino” increases separation and stigmatization.

When you refer to them as “people with albinism,” that empahsizes the fact that they are people first and that their condition does not define them.  According to Mashawna, “I don’t like hearing ‘Is she albino?’ But it doesn’t bother me as much as it used to. I understand that this is the term that most people are familiar with, but the word has so often been used in an inaccurate and/or insulting way by society and in media, that we prefer not to use it.”

But you also should not automatically dismiss this term.  According to an article on Vis-Ability Stories, many people with albinism are embracing the word “albino” as a source of pride and identity. So follow your loved one’s cues, and refer to their condition in the way that they are most comfortable.

2.  They want you to know that albinism is not necessarily a disability.

According to NOAH, albinism is not considered a disability under the Americans with Disabilities Act, because it does not always cause significant limitations in the activities of people who have it.  While some people with albinism do have disabilities, such as visual impairment, albinism itself is not considered to be a disability.

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3.  They do, however, have many experiences similar to those who have disabilities.

NOAH states that people with albinism are a unique group and often do feel isolated from people who do not have albinism. Albinism is a part of their identity, and they are often met with prejudice and misunderstanding about their condition. People with albinism have many of the same social challenges as people with disabilities.

4.  They want you to know that people of all races can have albinism.

Albinism does not only affect families with light skin, according to NOAH.  This condition can be especially challenging for African-Americans and people who belong to darker-skinned races. Albinism can cause these people to experience difficulty with their racial identities and lead to struggles to “fit in” with other people of their culture.

5.  They also want you to realize that albinism is not an illness.

According to Every Child Ministries (ECM), albinism is not a sickness or a disease. It is a genetic condition inherited from both parents, even if the parents do not have albinism. Take care to treat a loved one with albinism as if they are healthy–because they are!

6.  They can lead “normal” lives.

ECM states that people with albinism can expect to have a normal lifespan and lead lives without any limitations due to their condition. They do not have any type of mental impairment, and they can expect to achieve the same goals as their peers who do not have albinism.

7.  They often have eyes that are sensitive to light.

Wearing sunglasses is a must. People with albinism have light-sensitive eyes that can feel a painful, burning sensation in the sun, according to ECM. They need to take extra precautions in order to protect their eyes. Mashawna states, “Sunglasses AND a hat are a must! Also sometimes even indoor lights can be a problem especially florescent lighting. They put shades over the light fixtures in Lyra’s school classrooms.  Also, overall visual acuity is impacted by the amount of light.”

8.  They also have sensitive skin.

According to ECM, people with albinism have skin that burns easily in the sun, and they often get sores on their skin and lips, due to its sensitivity. There is also an increased risk of skin cancer in people with albinism.  Staying out of the sun during the hottest times of the day, and wearing sunblock and protective clothing can help minimize skin issues.

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According to Mashawna, “…one advantage specific to albinism that I can think of would be that it forced everyone in our family to pay better attention to and stress the importance of sun protection.”

9.  They want you to know that there are different types of albinism.

According to Kids’ Health, different people are affected differently by albinism. Some people have pale skin and hair, while others only have eyes that are affected. The eyes of a person with albinism may be red or pink, or they may be brown or blue.  Some people with albinism have visual impairment, while others do not. It is important to realize that if you know one person with albinism, you know one person with albinism.

10.  They may have visual impairments.

The visual impairments that people experience with albinism can vary. Kids Health states that many people with albinism are near-sighted, far-sighted or have other visual impairments.

Some visual problems can be corrected with glasses or contacts, some require surgery, and some can not be corrected at all.

It is important to realize that a lot of people with albinism try to hide their visual impairments, because they want to fit in with everyone else.

This has been the greatest challenge that Lyra has faced.  She has poor depth perception and difficulty reading social cues, due to her limited vision.

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According to Mashawna, “Lyra is pretty smart and quick to memorize her environment so she can be a pretty good ‘faker’ especially in familiar places…But then those moments when she DOES struggle visually, tripping on a step, getting too close to a person when talking or holding a book an inch away from her face, if to people who don’t know she has low vision, she just looks weird.”

11.  They want you to know that some types of albinism are associated with more severe health issues.

According to the American Association for Pediatric Ophthalmology and Strabismus, two rare forms of albinism are associated with other health issues.  People with Hermansky-Pudlak Syndrome (HPS) often have more bleeding and bruising, as well as bowel and lung disease in some cases. Chédiak-Higashi syndrome causes increased risk of infections, anemia, and enlarged liver.

Learning about your loved one’s albinism can help both of you to face this challenge together.  Mashawna states that, ” ​I think one advantage of having a child with albinism would be the way it changes you.  It has forced us to have more patience overall. It has given us more awareness and tolerance for people with differences or disabilities.  It’s taught us to be more compassionate.”

As you grow in your understanding of your loved one with albinism, you may be surprised by the ignorance and misconceptions that people have about this condition.  Perhaps the best way to support your loved one is to spread the word and correct the misinformation that you hear. Spreading understanding is spreading love!

To help spread understanding, you may want to start by sharing this video that Mashawna created.

Perception is Not Reality

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Featured photo credit: Mashawna Thompson, http://parentofachildwithalbinism.com via parentofachildwithalbinism.com

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Last Updated on July 20, 2021

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

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

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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