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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 May 22, 2020

What Makes a Good Leader: 9 Critical Leadership Qualities

What Makes a Good Leader: 9 Critical Leadership Qualities

The word “leader” makes you think of people in charge, high-ranking people: your boss, politicians, presidents, CEOs…

But leadership really isn’t about a particular position or a person’s seniority. Just because someone has worked for many years doesn’t mean s/he has gained the qualities and skills to lead a team.

Getting promoted to a managerial position doesn’t automatically turn you into a leader either. CEOs and other high-ranking officials don’t always have great leadership skills.

So what makes a good leader? What are the characteristics of a leader?

Good leadership is about acquiring and honing specific skills. Leadership skills enable you to be a role model for a team in any environment. With great leadership qualities, successful leaders come in all shapes and sizes: in the home, at school, or in the workplace.

The following are some of the many characteristics great leaders exhibit.

1. A Positive Attitude

Great leaders know that they won’t have a happy and motivated team unless they themselves exhibit a positive attitude. This can be done by remaining positive when things go wrong and by creating a relaxed and happy atmosphere in the workplace.

Even some simple things like providing snacks or organizing a team Happy Hour can make a world of difference. An added perk is that team members are likely to work harder and do overtime when needed if they’re happy and appreciated.

Even in the worst situations, such as experiencing low team morale or team members having made a big mistake at work, a great leader stays positive and figures out ways to keep the team motivated to solve the problems.

Walt Disney had his share of hardships and challenges, and like any great leader, he managed to stay positive and find new opportunities. In 1928, Disney found that his film producer, Charles Mintz, wanted to reduce his payments for the Oswald series. Mintz threatened to cut ties entirely if Disney didn’t accept his terms, and Disney chose to part ways. But in leaving Oswald, Disney decided to create something new: the iconic Mickey Mouse[1].

The key is to break down huge challenges into smaller ones and find ways to tackle them one by one.

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Think about the lessons you can learn from the mistake and jot them down because sometimes you win, and sometimes you learn.

2. Confidence

All great leaders have to exhibit an air of confidence if they’re going to succeed. Please don’t confuse this with self-satisfaction and arrogance. You want people to look up to you for inspiration, not so they can punch you in the face.

Confidence is important because people will be looking to you on how to behave, particularly if things aren’t going 100% right. If you remain calm and poised, team members are far more likely to as well. As a result, morale and productivity will remain high, and the problem will be solved more quickly.

If you panic and give up, they will know immediately and things will simply go downhill from there.

Elon Musk is a great example of a leader with confidence. He truly believes that Tesla will be successful, which he has shown many times through his actions. He converted 532,000 stock options at $6.63 each, their value on Dec. 4, 2009, before Tesla went public. It was a hefty bargain considering Tesla’s stock price stood at around $195 per share at that time. He doesn’t apologize for his beliefs and has drawn fire from just about everyone for his political actions.

You can’t instantly become a very confident person, but all the small things you do every day will gradually make you more confident:

  • List 5 things you like about yourself every day (something different every day), and you’ll appreciate yourself more.
  • Work on your strengths and do your best to enhance them.

3. A Sense of Humor

It’s imperative for any kind of leader to have a sense of humor, particularly when things go wrong. And they will.

Your team members are going to be looking to you for how to react in a seemingly dire situation. It would probably be best if you weren’t stringing up a noose for yourself in the corner. You need to be able to laugh things off because if staff morale goes down, so will productivity.

Establish this environment prior to any kind of meltdown by encouraging humor and personal discussions in the workplace.

As a president, Barack Obama exuded confidence and calm during stressful situations. But he was also known for his “dad jokes,”[2] his genuinely funny speeches at the White House Correspondents’ Dinner, and appearing on Zack Galifianakis’s Between Two Ferns.[3] Obama’s sense of humor made him grounded, realistic, and honest, which no doubt helped during some tense moments in the White House!

Learn to laugh at yourself. Confident people laugh about their own silly mistakes, and when you do this, others will also trust you more because you’re willing to share your experiences.

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Be observant and learn from the jokes others make. You can also get a lot of inspiration from the internet.

4. Ability to Embrace Failure

No matter how hard you try to avoid it, failures will happen; that’s okay. You just need to know how to deal with them.

Great leaders take them in strides. They remain calm and logically think through the situation and utilize their resources. What they don’t do is fall apart and reveal to their team how worried they are, which leads to negative morale, fear, and binge-drinking under desks.

Great leaders do, in fact, lead, even when they’re faced with setbacks.

Henry Ford experienced a major setback after designing and improving the Ford Quadricycle. He founded the Detroit Automobile Company in 1899, but the resulting cars they produced did not live up to his standards and were too expensive. The company dissolved in 1901. Ford took this in stride and formed the Henry Ford Company. The sales were slow and the company had financial problems; it wasn’t until 1903 that the Ford Motor Company was successful and put the Ford on the map.

Get to the root cause of any problem so you can prevent it from happening again and learn from the mistake.

By asking “why” 5 times (or more) on why something happened, you can find out the key factor that caused the problem and can find the best solution to tackle the problem.

You’ll also learn how to prevent this from happening again in the future after finding out a problem’s root cause.

5. Careful Listening and Feedback

This is far more complex than it actually sounds. Good communication skills are essential for a great leader. You may very well understand the cave of crazy that is your brain, but that doesn’t mean that you can adequately take the ideas out of it and explain them to someone else.

The best leaders need to be able to communicate clearly with the people around them. They also need to be able to interpret other people properly and not take what they say personally.

The Dalai Lama, as a symbol of the unification of the state of Tibet, represents and practices Buddhist values. The Dalai Lama’s leadership is benevolent and aims toward truth and understanding, alongside the other Buddhist precepts. This is a great example for all leaders: if you want to give good directions to others, you have to get feedback from others to understand the situation properly.

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Encourage communication between team members and establish an open door policy.

Practice not interrupting team members when they’re talking. Instead, summarize what they say and ask for feedback after you have talked about your ideas.

6. Knowing How and When to Delegate

No matter how much you might want to, you can’t actually do everything yourself. Even if you could, in a team environment that would be a terrible idea anyway.

Good leaders recognize that delegation does more than simply alleviate their own stress levels (although that’s obviously a nice perk). Delegating to others shows that you have confidence in their abilities, which subsequently results in higher morale in the workplace, as well as loyalty from your staff. They want to feel appreciated and trusted.

Although Steve Jobs was known for focusing in on the smallest of details, he knew how to delegate. By finding, cultivating, and trusting capable team members, Jobs was able to make Apple run smoothly, even when he had to be absent for extended periods of time.

To know when and how to delegate work to team members, you have to be very familiar with each of them:

  • List out all of their strengths, weaknesses, and personalities.
  • Talk with your team members more to know about their passion and interests.

Take a look at this guide and learn more about delegation: How to Delegate Work Effectively (The Definitive Guide for Leaders)

7. Growth Mindset

Any good leader knows how important it is to develop the skills of those around them. The best can recognize those skills early on. Not only will development make work easier as they improve and grow, it will also foster morale. In addition, they may develop some skills that you don’t possess that will be beneficial to the workplace.

Great leaders share their knowledge with the team and give them the opportunity to achieve. This is how leaders gain their respect and loyalty.

Pope Francis has been unusually popular with many Catholics and many non-Catholics. His position isn’t totally traditional, which is part of his appeal, but he also has admirable leadership skills. Pope Francis’s TED talk[4] drew attention because he encouraged leaders to be humble and to demonstrate solidarity with others. This inclusive, kind, and respectful style of leadership is incredibly important for any situation.

It’s important to spend time talking with other team members individually to understand them.

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Find out team members’ current challenges and try to give feedback and encouragement so they will grow and do better.

8. Responsibility

Great leaders know that when it comes to their company, work place or whatever situation they’re in, they need to take personal responsibility for failure. How can they expect employees to hold themselves accountable if they themselves don’t?

The best leaders don’t make excuses; they take the blame and then work out how to fix the problem as soon as possible. This proves that they’re trustworthy and possess integrity.

Howard Gillman is the chancellor of UC Irvine. You might have heard of how the university rescinded a bunch of acceptances, and then changed its mind[5], This past spring, an unusually high number of accepted students decided to matriculate; the school initially responded by rescinding offers over things like missed deadlines. But the college realized this was a mistake and reversed its decision. Gillman and the university accepted responsibility and decided to move past their earlier bad decision.

Always ask yourself what you can do better or what you should change. Take responsibility and think about what you can do better to prevent this from happening next time.

9. A Desire to Learn

It’s safe to say that all great leaders will have to enter unchartered waters at some point during their career. Because of this, they have to be able to trust their intuition and draw on past experiences to guide them.

Great leaders know that there’s always something to learn from everything they have experienced before. They are able to connect the present challenges with the lessons learned in the past to make decisions and take actions promptly.

You can either recall what you’ve learned from your memories or search your notes (ideally, a software that you can access anywhere with things well-organized).

Warren Buffett, one of the richest people in the world, has mostly made the right calls. But in dealing with huge amounts of money, Buffett has also made several multi-million (and sometimes multi-billion) dollar mistakes. He has stated that buying the company Berkshire Hathaway was his biggest mistake[6]. From that poor choice, he realized that it was unwise to pursue “improvements” and “expansions” in the existing textile industry. Despite mistakes like this, Buffett has invested wisely, and it shows.

To effectively learn from the past, write down lessons you’ve learned from any mistakes you’ve made. Have all the lessons well organized, and when similar things happen again in future, take these lessons as references.

The Bottom Line

Leadership traits are learnable. If you practice consistently, you can be a great leader, too.

Make small changes to your habits when you work with your team, wherever that may be. Most of us aren’t presidents or CEOs, but we all work with other people, and our actions always impact others. This gives every person the chance to develop leadership skills and to stand out from the crowd.

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Featured photo credit: Markus Spiske via unsplash.com

Reference

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