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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 October 22, 2020

8 Simple Ways to Be a Better Listener

8 Simple Ways to Be a Better Listener

How would you feel if you were sharing a personal story and noticed that the person to whom you were speaking wasn’t really listening? You probably wouldn’t be too thrilled.

Unfortunately, that is the case for many people. Most individuals are not good listeners. They are good pretenders. The thing is, true listening requires work—more work than people are willing to invest. Quality conversation is about “give and take.” Most people, however, want to just give—their words, that is. Being on the receiving end as the listener may seem boring, but it’s essential.

When you are attending to someone and paying attention to what they’re saying, it’s a sign of caring and respect. The hitch is that attending requires an act of will, which sometimes goes against what our minds naturally do—roaming around aimlessly and thinking about whatnot, instead of listening—the greatest act of thoughtfulness.

Without active listening, people often feel unheard and unacknowledged. That’s why it’s important for everyone to learn how to be a better listener.

What Makes People Poor Listeners?

Good listening skills can be learned, but first, let’s take a look at some of the things that you might be doing that makes you a poor listener.

1. You Want to Talk to Yourself

Well, who doesn’t? We all have something to say, right? But when you are looking at someone pretending to be listening while, all along, they’re mentally planning all the amazing things they’re going to say, it is a disservice to the speaker.

Yes, maybe what the other person is saying is not the most exciting thing in the world. Still, they deserve to be heard. You always have the ability to steer the conversation in another direction by asking questions.

It’s okay to want to talk. It’s normal, even. Keep in mind, however, that when your turn does come around, you’ll want someone to listen to you.

2. You Disagree With What Is Being Said

This is another thing that makes you an inadequate listener—hearing something with which you disagree with and immediately tuning out. Then, you lie in wait so you can tell the speaker how wrong they are. You’re eager to make your point and prove the speaker wrong. You think that once you speak your “truth,” others will know how mistaken the speaker is, thank you for setting them straight, and encourage you to elaborate on what you have to say. Dream on.

Disagreeing with your speaker, however frustrating that might be, is no reason to tune them out and ready yourself to spew your staggering rebuttal. By listening, you might actually glean an interesting nugget of information that you were previously unaware of.

3. You Are Doing Five Other Things While You’re “Listening”

It is impossible to listen to someone while you’re texting, reading, playing Sudoku, etc. But people do it all the time—I know I have.

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I’ve actually tried to balance my checkbook while pretending to listen to the person on the other line. It didn’t work. I had to keep asking, “what did you say?” I can only admit this now because I rarely do it anymore. With work, I’ve succeeded in becoming a better listener. It takes a great deal of concentration, but it’s certainly worth it.

If you’re truly going to listen, then you must: listen! M. Scott Peck, M.D., in his book The Road Less Travel, says, “you cannot truly listen to anyone and do anything else at the same time.” If you are too busy to actually listen, let the speaker know, and arrange for another time to talk. It’s simple as that!

4. You Appoint Yourself as Judge

While you’re “listening,” you decide that the speaker doesn’t know what they’re talking about. As the “expert,” you know more. So, what’s the point of even listening?

To you, the only sound you hear once you decide they’re wrong is, “Blah, blah, blah, blah, blah!” But before you bang that gavel, just know you may not have all the necessary information. To do that, you’d have to really listen, wouldn’t you? Also, make sure you don’t judge someone by their accent, the way they sound, or the structure of their sentences.

My dad is nearly 91. His English is sometimes a little broken and hard to understand. People wrongly assume that he doesn’t know what he’s talking about—they’re quite mistaken. My dad is a highly intelligent man who has English as his second language. He knows what he’s saying and understands the language perfectly.

Keep that in mind when listening to a foreigner, or someone who perhaps has a difficult time putting their thoughts into words.

Now, you know some of the things that make for an inferior listener. If none of the items above resonate with you, great! You’re a better listener than most.

How To Be a Better Listener

For conversation’s sake, though, let’s just say that maybe you need some work in the listening department, and after reading this article, you make the decision to improve. What, then, are some of the things you need to do to make that happen? How can you be a better listener?

1. Pay Attention

A good listener is attentive. They’re not looking at their watch, phone, or thinking about their dinner plans. They’re focused and paying attention to what the other person is saying. This is called active listening.

According to Skills You Need, “active listening involves listening with all senses. As well as giving full attention to the speaker, it is important that the ‘active listener’ is also ‘seen’ to be listening—otherwise, the speaker may conclude that what they are talking about is uninteresting to the listener.”[1]

As I mentioned, it’s normal for the mind to wander. We’re human, after all. But a good listener will rein those thoughts back in as soon as they notice their attention waning.

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I want to note here that you can also “listen” to bodily cues. You can assume that if someone keeps looking at their watch or over their shoulder, their focus isn’t on the conversation. The key is to just pay attention.

2. Use Positive Body Language

You can infer a lot from a person’s body language. Are they interested, bored, or anxious?

A good listener’s body language is open. They lean forward and express curiosity in what is being said. Their facial expression is either smiling, showing concern, conveying empathy, etc. They’re letting the speaker know that they’re being heard.

People say things for a reason—they want some type of feedback. For example, you tell your spouse, “I had a really rough day!” and your husband continues to check his newsfeed while nodding his head. Not a good response.

But what if your husband were to look up with questioning eyes, put his phone down, and say, “Oh, no. What happened?” How would feel, then? The answer is obvious.

According to Alan Gurney,[2]

“An active listener pays full attention to the speaker and ensures they understand the information being delivered. You can’t be distracted by an incoming call or a Facebook status update. You have to be present and in the moment.

Body language is an important tool to ensure you do this. The correct body language makes you a better active listener and therefore more ‘open’ and receptive to what the speaker is saying. At the same time, it indicates that you are listening to them.”

3. Avoid Interrupting the Speaker

I am certain you wouldn’t want to be in the middle of a sentence only to see the other person holding up a finger or their mouth open, ready to step into your unfinished verbiage. It’s rude and causes anxiety. You would, more than likely, feel a need to rush what you’re saying just to finish your sentence.

Interrupting is a sign of disrespect. It is essentially saying, “what I have to say is much more important than what you’re saying.” When you interrupt the speaker, they feel frustrated, hurried, and unimportant.

Interrupting a speaker to agree, disagree, argue, etc., causes the speaker to lose track of what they are saying. It’s extremely frustrating. Whatever you have to say can wait until the other person is done.

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Be polite and wait your turn!

4. Ask Questions

Asking questions is one of the best ways to show you’re interested. If someone is telling you about their ski trip to Mammoth, don’t respond with, “that’s nice.” That would show a lack of interest and disrespect. Instead, you can ask, “how long have you been skiing?” “Did you find it difficult to learn?” “What was your favorite part of the trip?” etc. The person will think highly of you and consider you a great conversationalist just by you asking a few questions.

5. Just Listen

This may seem counterintuitive. When you’re conversing with someone, it’s usually back and forth. On occasion, all that is required of you is to listen, smile, or nod your head, and your speaker will feel like they’re really being heard and understood.

I once sat with a client for 45 minutes without saying a word. She came into my office in distress. I had her sit down, and then she started crying softly. I sat with her—that’s all I did. At the end of the session, she stood, told me she felt much better, and then left.

I have to admit that 45 minutes without saying a word was tough. But she didn’t need me to say anything. She needed a safe space in which she could emote without interruption, judgment, or me trying to “fix” something.

6. Remember and Follow Up

Part of being a great listener is remembering what the speaker has said to you, then following up with them.

For example, in a recent conversation you had with your co-worker Jacob, he told you that his wife had gotten a promotion and that they were contemplating moving to New York. The next time you run into Jacob, you may want to say, “Hey, Jacob! Whatever happened with your wife’s promotion?” At this point, Jacob will know you really heard what he said and that you’re interested to see how things turned out. What a gift!

According to new research, “people who ask questions, particularly follow-up questions, may become better managers, land better jobs, and even win second dates.”[3]

It’s so simple to show you care. Just remember a few facts and follow up on them. If you do this regularly, you will make more friends.

7. Keep Confidential Information Confidential

If you really want to be a better listener, listen with care. If what you’re hearing is confidential, keep it that way, no matter how tempting it might be to tell someone else, especially if you have friends in common. Being a good listener means being trustworthy and sensitive with shared information.

Whatever is told to you in confidence is not to be revealed. Assure your speaker that their information is safe with you. They will feel relieved that they have someone with whom they can share their burden without fear of it getting out.

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Keeping someone’s confidence helps to deepen your relationship. Also, “one of the most important elements of confidentiality is that it helps to build and develop trust. It potentially allows for the free flow of information between the client and worker and acknowledges that a client’s personal life and all the issues and problems that they have belong to them.”[4]

Be like a therapist: listen and withhold judgment.

NOTE: I must add here that while therapists keep everything in a session confidential, there are exceptions:

  1. If the client may be an immediate danger to himself or others.
  2. If the client is endangering a population that cannot protect itself, such as in the case of a child or elder abuse.

8. Maintain Eye Contact

When someone is talking, they are usually saying something they consider meaningful. They don’t want their listener reading a text, looking at their fingernails, or bending down to pet a pooch on the street. A speaker wants all eyes on them. It lets them know that what they’re saying has value.

Eye contact is very powerful. It can relay many things without anything being said. Currently, it’s more important than ever with the Covid-19 Pandemic. People can’t see your whole face, but they can definitely read your eyes.

By eye contact, I don’t mean a hard, creepy stare—just a gaze in the speaker’s direction will do. Make it a point the next time you’re in a conversation to maintain eye contact with your speaker. Avoid the temptation to look anywhere but at their face. I know it’s not easy, especially if you’re not interested in what they’re talking about. But as I said, you can redirect the conversation in a different direction or just let the person know you’ve got to get going.

Final Thoughts

Listening attentively will add to your connection with anyone in your life. Now, more than ever, when people are so disconnected due to smartphones and social media, listening skills are critical.

You can build better, more honest, and deeper relationships by simply being there, paying attention, and asking questions that make the speaker feel like what they have to say matters.

And isn’t that a great goal? To make people feel as if they matter? So, go out and start honing those listening skills. You’ve got two great ears. Now use them!

More Tips on How to Be a Better Listener

Featured photo credit: Joshua Rodriguez via unsplash.com

Reference

[1] Skills You Need: Active Listening
[2] Filtered: Body language for active listening
[3] Forbes: People Will Like You More If You Start Asking Follow-up Questions
[4] TAFE NSW Sydney eLearning Moodle: Confidentiality

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