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11 Things To Remember If You Love A Person With Albinism

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

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

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Last Updated on January 15, 2021

7 Ways To Have More Confident Body Language

7 Ways To Have More Confident Body Language

The popular idiomatic saying that “actions speak louder than words” has been around for centuries, but even to this day, most people struggle with at least one area of nonverbal communication. Consequently, many of us aspire to have more confident body language but don’t have the knowledge and tools necessary to change what are largely unconscious behaviors.

Given that others’ perceptions of our competence and confidence are predominantly influenced by what we do with our faces and bodies, it’s important to develop greater self-awareness and consciously practice better posture, stance, eye contact, facial expressions, hand movements, and other aspects of body language.

Posture

First things first: how is your posture? Let’s start with a quick self-assessment of your body.

  • Are your shoulders slumped over or rolled back in an upright posture?
  • When you stand up, do you evenly distribute your weight or lean excessively to one side?
  • Does your natural stance place your feet relatively shoulder-width apart or are your feet and legs close together in a closed-off position?
  • When you sit, does your lower back protrude out in a slumped position or maintain a straight, spine-friendly posture in your seat?

All of these are important considerations to make when evaluating and improving your posture and stance, which will lead to more confident body language over time. If you routinely struggle with maintaining good posture, consider buying a posture trainer/corrector, consulting a chiropractor or physical therapist, stretching daily, and strengthening both your core and back muscles.

Facial Expressions

Are you prone to any of the following in personal or professional settings?

  • Bruxism (tight, clenched jaw or grinding teeth)
  • Frowning and/or furrowing brows
  • Avoiding direct eye contact and/or staring at the ground

If you answered “yes” to any of these, then let’s start by examining various ways in which you can project confident body language through your facial expressions.

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1. Understand How Others Perceive Your Facial Expressions

A December 2020 study by UC Berkeley and Google researchers utilized a deep neural network to analyze facial expressions in six million YouTube clips representing people from over 140 countries. The study found that, despite socio-cultural differences, people around the world tended to use about 70% of the same facial expressions in response to different emotional stimuli and situations.[1]

The study’s researchers also published a fascinating interactive map to demonstrate how their machine learning technology assessed various facial expressions and determined subtle differences in emotional responses.

This study highlights the social importance of facial expressions because whether or not we’re consciously aware of them—by gazing into a mirror or your screen on a video conferencing platform—how we present our faces to others can have tremendous impacts on their perceptions of us, our confidence, and our emotional states. This awareness is the essential first step towards

2. Relax Your Face

New research on bruxism and facial tension found the stresses and anxieties of Covid-19 lockdowns led to considerable increases in orofacial pain, jaw-clenching, and teeth grinding, particularly among women.[2]

The National Institute of Dental and Craniofacial Research estimates that more than 10 million Americans alone have temporomandibular joint dysfunction (TMJ syndrome), and facial tension can lead to other complications such as insomnia, wrinkles, dry skin, and dark, puffy bags under your eyes.[3])

To avoid these unpleasant outcomes, start practicing progressive muscle relaxation techniques and taking breaks more frequently throughout the day to moderate facial tension.[4] You should also try out some biofeedback techniques to enhance your awareness of involuntary bodily processes like facial tension and achieve more confident body language as a result.[5]

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3. Improve Your Eye Contact

Did you know there’s an entire subfield of kinesic communication research dedicated to eye movements and behaviors called oculesics?[6] It refers to various communication behaviors including direct eye contact, averting one’s gaze, pupil dilation/constriction, and even frequency of blinking. All of these qualities can shape how other people perceive you, which means that eye contact is yet another area of nonverbal body language that we should be more mindful of in social interactions.

The ideal type (direct/indirect) and duration of eye contact depends on a variety of factors, such as cultural setting, differences in power/authority/age between the parties involved, and communication context. Research has shown that differences in the effects of eye contact are particularly prominent when comparing East Asian and Western European/North American cultures.[7]

To improve your eye contact with others, strive to maintain consistent contact for at least 3 to 4 seconds at a time, consciously consider where you’re looking while listening to someone else, and practice eye contact as much as possible (as strange as this may seem in the beginning, it’s the best way to improve).

3. Smile More

There are many benefits to smiling and laughing, and when it comes to working on more confident body language, this is an area that should be fun, low-stakes, and relatively stress-free.

Smiling is associated with the “happiness chemical” dopamine and the mood-stabilizing hormone, serotonin. Many empirical studies have shown that smiling generally leads to positive outcomes for the person smiling, and further research has shown that smiling can influence listeners’ perceptions of our confidence and trustworthiness as well.

4. Hand Gestures

Similar to facial expressions and posture, what you do with your hands while speaking or listening in a conversation can significantly influence others’ perceptions of you in positive or negative ways.

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It’s undoubtedly challenging to consciously account for all of your nonverbal signals while simultaneously trying to stay engaged with the verbal part of the discussion, but putting in the effort to develop more bodily awareness now will make it much easier to unconsciously project more confident body language later on.

5. Enhance Your Handshake

In the article, “An Anthropology of the Handshake,” University of Copenhagen social anthropology professor Bjarke Oxlund assessed the future of handshaking in wake of the Covid-19 pandemic:[8]

“Handshakes not only vary in function and meaning but do so according to social context, situation and scale. . . a public discussion should ensue on the advantages and disadvantages of holding on to the tradition of shaking hands as the conventional gesture of greeting and leave-taking in a variety of circumstances.”

It’s too early to determine some of the ways in which Covid-19 has permanently changed our social norms and professional etiquette standards, but it’s reasonable to assume that handshaking may retain its importance in American society even after this pandemic. To practice more confident body language in the meantime, the video on the science of the perfect handshake below explains what you need to know.

6. Complement Your Verbals With Hand Gestures

As you know by now, confident communication involves so much more than simply smiling more or sounding like you know what you’re talking about. What you do with your hands can be particularly influential in how others perceive you, whether you’re fidgeting with an object, clenching your fists, hiding your hands in your pockets, or calmly gesturing to emphasize important points you’re discussing.

Social psychology researchers have found that “iconic gestures”—hand movements that appear to be meaningfully related to the speaker’s verbal content—can have profound impacts on listeners’ information retention. In other words, people are more likely to engage with you and remember more of what you said when you speak with complementary hand gestures instead of just your voice.[9]

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Further research on hand gestures has shown that even your choice of the left or right hand for gesturing can influence your ability to clearly convey information to listeners, which supports the notion that more confident body language is readily achievable through greater self-awareness and deliberate nonverbal actions.[10]

Final Takeaways

Developing better posture, enhancing your facial expressiveness, and practicing hand gestures can vastly improve your communication with other people. At first, it will be challenging to consciously practice nonverbal behaviors that many of us are accustomed to performing daily without thinking about them.

If you ever feel discouraged, however, remember that there’s no downside to consistently putting in just a little more time and effort to increase your bodily awareness. With the tips and strategies above, you’ll be well on your way to embracing more confident body language and amplifying others’ perceptions of you in no time.

More Tips on How to Develop a Confident Body Language

Featured photo credit: Maria Lupan via unsplash.com

Reference

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