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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 21, 2019

How to Communicate Effectively in Any Relationship

How to Communicate Effectively in Any Relationship

For all our social media bravado, we live in a society where communication is seen less as an art, and more as a perfunctory exercise. We spend so much time with people, yet we struggle with how to meaningfully communicate.

If you believe you have mastered effective communication, scan the list below and see whether you can see yourself in any of the examples:

Example 1

You are uncomfortable with a person’s actions or comments, and rather than telling the individual immediately, you sidestep the issue and attempt to move on as though the offending behavior or comment never happened.

You move on with the relationship and develop a pattern of not addressing challenging situations. Before long, the person with whom you are in relationship will say or do something that pushes you over the top and predictably, you explode or withdraw completely from the relationship.

In this example, hard-to-speak truths become never- expressed truths that turn into resentment and anger.

Example 2

You communicate from the head and without emotion. While what you communicate makes perfect sense to you, it comes across as cold because it lacks emotion.

People do not understand what motivates you to say what you say, and without sharing your feelings and emotions, others experience you as rude, cold or aggressive.

You will know this is a problem if people shy away from you, ignore your contributions in meetings or tell you your words hurt. You can also know you struggle in this area if you find yourself constantly apologizing for things you have said.

Example 3

You have an issue with one person, but you communicate your problem to an entirely different person.

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The person in whom you confide lacks the authority to resolve the matter troubling you, and while you have vented and expressed frustration, the underlying challenge is unresolved.

Example 4

You grew up in a family with destructive communication habits and those habits play out in your current relationships.

Because you have never stopped to ask why you communicate the way you do and whether your communication style still works, you may lack understanding of how your words impact others and how to implement positive change.

If you find yourself in any of the situations described above, this article is for you.

Communication can build or decimate worlds and it is important we get it right. Regardless of your professional aspirations or personal goals, you can improve your communication skills if you:

  • Understand your own communication style
  • Tailor your style depending on the needs of the audience
  • Communicate with precision and care
  • Be mindful of your delivery, timing and messenger

1. Understand Your Communication Style

To communicate effectively, you must understand the communication legacy passed down from our parents, grandparents or caregivers. Each of us grew up with spoken and unspoken rules about communication.

In some families, direct communication is practiced and honored. In other families, family members are encouraged to shy away from difficult conversations. Some families appreciate open and frank dialogue and others do not. Other families practice silence about substantive matters, that is, they seldom or rarely broach difficult conversations at all.

Before you can appreciate the nuance required in communication, it helps to know the familial patterns you grew up with.

2. Learn Others Communication Styles

Communicating effectively requires you to take a step back, assess the intended recipient of your communication and think through how the individual prefers to be communicated with. Once you know this, you can tailor your message in a way that increases the likelihood of being heard. This also prevents you from assuming the way you communicate with one group is appropriate or right for all groups or people.

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If you are unsure how to determine the styles of the groups or persons with whom you are interacting, you can always ask them:

“How do you prefer to receive information?”

This approach requires listening, both to what the individuals say as well as what is unspoken. Virgin Group CEO Richard Branson noted that the best communicators are also great listeners.

To communicate effectively from relationship to relationship and situation to situation, you must understand the communication needs of others.

3. Exercise Precision and Care

A recent engagement underscored for me the importance of exercising care when communicating.

On a recent trip to Ohio, I decided to meet up with an old friend to go for a walk. As we strolled through the soccer park, my friend gently announced that he had something to talk about, he was upset with me. His introduction to the problem allowed me to mentally shift gears and prepare for the conversation.

Shortly after introducing the shift in conversation, my friend asked me why I didn’t invite him to the launch party for my business. He lives in Ohio and I live in the D.C. area.

I explained that the event snuck up on me, and I only started planning the invite list three weeks before the event. Due to the last-minute nature of the gathering, I opted to invite people in the DMV area versus my friends from outside the area – I didn’t want to be disrespectful by asking them to travel on such short notice.

I also noted that I didn’t want to be disappointed if he and others declined to come to the event. So I played it safe in terms of inviting people who were local.

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In the moment, I felt the conversation went very well. I also checked in with my friend a few days after our walk, affirmed my appreciation for his willingness to communicate his upset and our ability to work through it.

The way this conversation unfolded exemplified effective communication. My friend approached me with grace and vulnerability. He approached me with a level of curiosity that didn’t put me on my heels — I was able to really listen to what he was saying, apologize for how my decision impacted him and vow that going forward, I would always ask rather than making decisions for him and others.

Our relationship is intact, and I now have information that will help me become a better friend to him and others.

4. Be Mindful of Delivery, Timing and Messenger

Communicating effectively also requires thinking through the delivery of the message one intends to communicate as well as the appropriate time for the discussion.

In an Entrepreneur.com column, VIP Contributor Deep Patel, noted that persons interested in communicating well need to master the art of timing. Patel noted,[1]

“Great comedians, like all great communicators, are able to feel out their audience to determine when to move on to a new topic or when to reiterate an idea.”

Communicating effectively also requires thoughtfulness about the messenger. A person prone to dramatic, angry outbursts should never be called upon to deliver constructive feedback, especially to people whom they do not know. The immediate aftermath of a mass shooting is not the ideal time to talk about the importance of the Second Amendment rights.

Like everyone else, I must work to ensure my communication is layered with precision and care.

It requires precision because words must be carefully tailored to the person with whom you are speaking.

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It requires intentionality because before one communicates, one should think about the audience and what the audience needs in order to hear your message the way you intended it to be communicated.

It requires active listening which is about hearing verbal and nonverbal messages.

Even though we may be right in what we say, how we say it could derail the impact of the message and the other parties’ ability to hear the message.

Communicating with care is also about saying things that the people in our life need to hear and doing so with love.

The Bottom Line

When I left the meeting with my dear friend, I wondered if I was replicating or modeling this level of openness and transparency in the rest of my relationships.

I was intrigued and appreciative. He’d clearly thought about what he wanted to say to me, picked the appropriate time to share his feedback and then delivered it with care. He hit the ball out of the park and I’m hopeful we all do the same.

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Featured photo credit: Kenan Buhic via unsplash.com

Reference

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