Stunning Photo Series Shows Albinism in a Way Society So Rarely Sees It


10 Dangerous Myths About Albinism, and the Truths Behind Them

Albinism is one of the least understood conditions around the world, and it doesn’t help that popular culture persists in perpetuating many myths.

Myths that are simply false.

These myths have existed throughout history and continue to negatively affect the lives of many people with albinism (PWA), even to this day.

In some cases, these myths are actually endangering lives, particularly in parts of Africa where ritualized violence against PWA is on the rise.

Here are 10 of the most common myths surrounding albinism, and the truths behind them:

1. Albinism is contagious. Albinism is a genetic condition passed on by both parents. Each parent must be a carrier, and both must pass on an albinism gene for someone to be born with the condition. It cannot be caught and is not contagious.

2. Albinism is a curse or a punishment. Albinism is a genetic condition that results in a lack or total absence of melanin (pigmentation) in the body. It is not a
curse or a punishment for past wrongs. It is purely an autosomal-recessive genetic condition that affects around 1 in 20,000 people in North America and Europe.

3. PWA are less intelligent. Albinism does not have an impact on a person’s
intelligence. Albinism merely affects the level of melanin in the body. It has nothing to do with the brain, and most people with albinism have average levels of intelligence. However, due to the lack of melanin present in the development of the eyes, most people with albinism suffer from significant vision impairment which can affect learning and education outcomes.

4. PWA have red eyes. PWA actually have eyes that range from blue through to brown. However, the lack of melanin that characterizes the condition means light is not absorbed by the eyes and is instead reflected back out, which sometimes leads to a reddish glow in certain lighting conditions.

5. PWA all have white skin and hair. Not all PWA are entirely white. PWA from an African background can instead have yellow or orange hair and can also have some level of skin pigmentation. There are many types of albinism too, some of which are characterized by reduced melanin, rather than a complete lack of it. In these cases, PWA will appear to have some pigmentation and will therefore not have the stereotypical white skin and hair.

6. PWA are evil. This is a myth perpetuated by society and reinforced by Hollywood. Albinism is, for some, a confronting condition. Anything to do with visible difference is invariably met with distrust. Throughout history, most PWA have been
stigmatized, demonized and ostracized, all because of how they look. Apart from lacking pigmentation and having a vision impairment, PWA are exactly the same as everyone else. And just like everyone else, they are not born inherently evil.

7. PWA can cure HIV and their body parts possess magical properties. In
2000-2013 the UN Human Rights Office received more than 200 reports of killings and dismembering of people with albinism for ritual purposes in 15 countries. It is also commonly believed in parts of Africa that having sex with someone with albinism can cure HIV. This is not true and has led to violent rapes and rising HIV infection rates in the albinism community. PWA do not possess magical properties nor the power to cure disease.

8. Albinism only affects appearance. Melanin is integral to developing skin, hair
and eye color, however it is also vital for the development of healthy vision. PWA often suffer from significant vision loss due to the lack of melanin present during the development of the eyes in the womb. Together with reduced visual acuity, albinism is also characterized by rapid, involuntary movement of the eyes (nystagmus), difficulty dealing with glare (photophobia) and problems with distance vision and depth perception.

9. PWA cannot go outside during the day. PWA can go outside at any time but need to take extra precautions when out in the sun. Protective clothing, sunscreen and a hat are required all year round to minimize the risk of skin damage from the sun.

10. PWA are the result of the mixture of two races. PWA are the result of genetics, pure and simple. The rates of albinism in Africa, in particular, are higher than elsewhere partly due to a long held culture of intermarriage. So the greater prevalence of albinism is due to a limited gene pool; it’s not the result of the mixture of two races.

It seems to be a sad fact of life that those who look different will always be treated differently. The history of albinism and of PWA, even now, confirms this. Hopefully learning a little more about the condition will help people better understand it and hopefully lead to greater acceptance by society.

Follow this journey on My Home Truths.

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To the Girl Who Was Just Diagnosed With Ocular Albinism

Well, hello there, little me. You had quite a bit of a rough day, haven’t you?

You spent a day not doing baby things, like napping or playing with your toys, but instead found yourself with your parents in a doctor’s office not too far from Orlando. You were poked and prodded and had light shined into your eye, all because your mom and dad noticed you weren’t making eye contact or tracking like a “typical” baby should.

That day was a frightening day for all involved, which ironically landed on all days, the day the Challenger exploded. A double day in history for your family.

baby girl in a yellow dress with a yellow bow

I ain’t going to lie to you, little me — ocular albinism is a label not everyone wants, being legally blind and living a life restricted in more ways then one. Not being able to drive or participate in sports, being denied friendships and typical kid-like things because you’re different. It’s a devastating thing to know you might never fit in. You and your parents will find themselves crying some nights, wishing this would never happen to you and that it would magically go away.

Life is going to be hard; vision therapy and hospital visits will replace things like Gymboree or day care. Instead of cutesy circle time songs and finger games, you will constantly be tested by doctors and forced to explore the world in different ways through your vision therapy teachers, who will follow you up until you’re in high school.

People will judge you, interrupt your normal life with mobility lessons and IEP meetings, and make your life a living hell. Nobody seems to take you seriously, and you will always struggle with trying to fit in.

But your tough and busy youth is just a small part of your life. With every bad experience comes a new opportunity to grow and prove the naysayers wrong. Everything you learned that you thought would be a waste of time actually comes in handy. Independence. You will earn it through hard work and determination. The dreams that got lost on that day in 1986 will come true. You’ll go to college and graduate, move out of state and land your dream job at Disney. There really is light at the end of the tunnel.

The next couple years will be hard, but don’t worry. It is worth it in the end. Although you can’t see it right away, the world is a beautiful place. You will live your life essentially limitless. Your eyes will not define you. Your strength to overcome will.

Don’t be afraid, little one. You got this.

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Many People Comment on My Child With Albinism, but This One Stood Out

When my daughter, Scotlyn, was born, she had high levels of jaundice, so they sent us home and told us to place her either in the sun or in front of windows in the sun. Five months later with a diagnosis of albinism under our belts, we now have strict instructions to keep her out of the sun. In fact, she has a whole wardrobe quickly filling up with full-body UV swimsuits, hats, sunglasses and soon a daily dose of head-to-toe sunscreen. I imagine we’ll get so good at spooning out tablespoons of Banana Boat, and lathering it between each finger and in the crooks of her ears, that it will turn into a ritual like brushing our teeth.

So earlier this week when a lady at the drug store told me my baby was the whitest baby she has ever seen, but will probably be the first teenager out suntanning, I just smile. It doesn’t end there, of course. She continues on about teenagers and tanning, and as I walk away, she turns to her friend to share whispers and stares at my fair-haired baby.

Mother laying next to her baby.

This scenario happens almost every time I am out with Scotlyn, but it’s a different store and a different woman. Their comments make me uncomfortable because they bring with them a fear that my daughter will have to grow up hearing how white her skin and hair is over and over again. I try not to let my mind play out these situations, which may or may never happen, but I can’t help it. Maybe she’s on the playground and a little boy wants to know why on the hottest day of the summer she’s wearing a long-sleeved shirt and sneakers instead of sandals. Or maybe she’s 16 and a girl in her class wants to know what she does to get her hair that white.

Scotlyn’s less than a year old now, but she might grow up to have low vision and may not always be able to perfectly see you, as is the case with most people with albinism. But she will always hear you, so I’d like to tell this lady, the future little boy at the playground or girls in her class to please choose their comments carefully.

Later, I returned to the same drug store with a sense of dread and was met with more comments. But this time as I left the store, it was the unmistakable tone of an older gentlemen. “Hey, miss!” he shouted. When I turned, I recognized him from the card aisle where I was trying to balance a basketful of baby items in one hand and Scotlyn in the other. I had to stop and put everything down, so I could hold her by both arms and let her bounce, her new favorite pastime. He continued talking as I strapped Scottie into her car seat. I half ignored him while I tried to get her out of the sun.

“It’s so nice to see the love you have for your daughter,” he told me. “I can tell you’re a good mom, so good job. They don’t stay that age for long, and I miss mine.” His comment took me off guard because it wasn’t what I was expecting to hear. On this day, we were just like any other mother and daughter out buying diaper cream. We left the store without remarks of whiteness, only a lasting impression of love.

To that gentleman at the drug store: thank you for seeing beyond the white hair and into our hearts.

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Stunning Photo Series Shows Albinism in a Way Society So Rarely Sees It

Photographer Angelina d’Auguste chose to photograph portraits of people with albinism for her senior thesis project at the Fashion Institute of Technology in New York City in May, and the results are stunning.

Most people have never interacted with anyone with albinism,” d’Auguste told Refinery29. “Unfortunately, it is difficult for [people with albinism] to fit in society, so I wanted to show their distinct, beautiful features in a positive way.”

Image courtesy of Angelina d’Auguste child lying on pillow
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste boy looking sad
Image courtesy of Angelina d’Auguste

Albinism is a genetic skin condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes, according to the National Organization for Albinism and Hypopigmentation (NOAH). Approximately one in 18,000 to 20,000 people in the United States is reported to have some type of albinism, and those with the condition also have vision problems that eyeglasses cannot correct, according to NOAH.

D’Auguste told Refinery29 her subjects recalled being teased when they were young, but as they’ve gotten older most have learned to embrace the condition.

“Having albinism…broke me out of my shell, because I am very shy,” one subject told D’Auguste. “It is a big part of who I am, and I wouldn’t trade that for the world.”

See more from the stunning series below:

Image courtesy of Angelina d’Auguste girl against a wall
Image courtesy of Angelina d’Auguste
man looking down
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste woman standing next to chair
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste baby in highchair
Image courtesy of Angelina d’Auguste
man looking down
Image courtesy of Angelina d’Auguste
woman near bed Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste woman sitting up looking at camera
Image courtesy of Angelina d’Auguste
man sitting on chair Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste image of boy staring
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste girl leaning against dresser
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste boy looking away
Image courtesy of Angelina d’Auguste

For more images, be sure to visit Angelina d’Auguste’s website.

Why I Wrote This Letter to the Class of My Daughter With Albinism

This is normally the greatest time of year for the introverted side of me. I survived the summer and now I get to send my little one back to school. Finally, I get to sink into a quiet routine where my work is completed in the daylight hours, instead of between 9 p.m. and 2 a.m., and no one is spilling my tea.

But this year is different. This year is “for realz.” This year my daughter with special needs will leave her special education bubble and take a seat in a mainstream classroom. And instead of eagerly awaiting the start of school, my heart feels like lead and a sad lump has taken root in my throat.

Kate Cosgrove the mighty.2-001

I have to remind myself that she will have an aide by her side. I have to tell myself she is very different from me, and quite possibly, the strongest and most extroverted person on the planet. Her laugh is contagious, and she will hopefully find a few kids who will truly get her.

Instead of sitting around imagining the worst of nosy questions going unanswered and looks being exchanged, I needed to do something productive to help ease the transition.

I decided to make this letter for her. And, of course, she wouldn’t sit still for photos, so I ended up including all the attempts that I took, which, in the end, capture her in a more real way than a posed picture ever could. 

And I pray the kids in her class will be able to take it in and choose to be patient with my funny, brave and beautiful girl.

All about Juniper

Hi! My name is Ruby and I’m in your class this year.

There are a couple things about me that are unique, but I’m still learning to talk, so it’s hard for me to explain with words.

I prefer to wear big shoes & coats, the extra room feels more cozy to me.

I have something called Albinism“Albinism” is a fancy word that means my body was born without color or “pigment.” It affects my eyes, skin & hair.

Because of Albinism:
• My hair is white like Elsa’s from “Frozen.”
• My skin is white & I always wear sunscreen so I don’t get sunburned.
• My light blue eyes don’t see clearly & also move a little from side to side.
• I have to hold things near my eyes to see.

I might get closer to you than other people do, but I’m not trying to be rude or make you uncomfortable, I just want to see you better.

If you wave at me instead of using your words to say “hi,” I might not see or recognize you. Other times I might accidentally bump into you.

I can’t understand the emotions on your face. If we are playing together and I do something that makes you mad, please tell me nicely with your words exactly what I should stop doing. Otherwise I might not even know your are upset!

Speaking isn’t easy for me, but the more you talk to me, the faster I will catch up with my words & be able to talk to you.

Even though I’m different from you in a couple of ways, I’m the same in many others! I love to laugh, run and play.

My favorite things:
• Hobbies: Drawing, running races, singing
• Movies: “Big Hero 6” & “The Amazing Spider-Man”
• Toys: Barbies, cars & doll houses
• Food: Macaroni & cheese, ice cream
• Books: “Curious George,” “Pinkalicious,” “Mother Goose”
• Holiday: Halloween (dressing up is the BEST!)

Please be patient with me and I hope we can be friends!

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