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

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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.

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

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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.

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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!

Follow this journey on Katecosgrove.com.

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A Note to My Difficult-to-Say (And Even More Difficult-to-Understand) Condition

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Autosomal Recessive Ocular Albinism: A condition with a long-winded name that takes forever to pronounce and even longer to explain. It’s a condition that struck my unsuspecting family like a bolt of lightening. It’s an ever-growing pain in the rear of my eyes that strikes unexpectedly and makes me feel like the “retard” society claims I am.

The day my mom and dad found out about your presence was, oddly enough, the day of the Challenger disaster — January 28, 1986 — when I was just a day shy of 4 months old. My parents sat on the side of the road as they watched their dreams for me go up with the rocket, only to explode minutes later.

Little did they know the life I was about to live would be one hell of an adventure.

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From the start, your rarity struck doctors as odd, and I spent my early years being poked, prodded and measured because of you. They wanted to know more about you, why you came so suddenly to a couple who had no albino traits in the family, why I wasn’t fully albino, why I would flinch when someone shined something in my face, why I would panic in crowds and get lost in the snow, why I just couldn’t focus without a crazy head tilt or why I have what I now jokingly refer to as “my gangsta lean.”

School was a big let down, and you did everything to make it hard on me. But teachers looked beyond you for the most part and saw the brains behind the blindness. You might have held me back temporarily, but not for long.

You became a bit of a pain growing up; I was never quite the normal kid my parents tried to raise. You were the reason I got beaten up, tossed off retaining walls, shoved into fences and had rocks thrown at me. Kids are so cruel (and they aren’t much better in adulthood, either). I missed out on job opportunities because of you, and college entrance exams became a hassle because your picky attitude wouldn’t let me read scantron sheets. Throughout my entire life, people assumed I was stupid because everything I saw looked like a crappy pixelated camera phone pic from 2005. I’m also face blind because of you, which makes situations awkward when meeting new people. (Raise your hand out there if I ever referred to you as someone else.)

But life has an uncanny way of turning itself around.

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As the years went by and I entered adult life with you still shaking my eyes and rattling my brain, I managed to live out many of my dreams. I went on to college and ultimately chased down my childhood dream of working for Disney. I defied the odds against me by reaching goals they told my parents I would never reach that day back in 1986 — from riding a bike to working a computer to even reading a printed word.

You still rear your ugly head some days, as I work in my ticket window and get weird stares from guests while I read their IDs. I get my fair share of rude comments and often feel embarrassed asking for help. And on some days, you fry my brain so hard I’m shaking in pain from the migraines you give me. (C’mon, give me a break already!)

Looking back on the almost 30 years I’ve been on this planet, I’ve learned one thing.

You don’t define who I am. I do.

My life may not be easy, but I can’t let that stop me from making it in this world. You will always be a constant struggle, but because of you, I am here.

I made it, whether you were in my corner or not.

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The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Baby With Albinism Has Incredible Reaction to her Mother's Singing

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This video will make you melt.

Little 7-month-old Louise has albinism, according to the video below. Albinism is an inherited condition where people are born with little or no pigment in their eyes, skin or hair, according to the National Organization for Albinism and Hypopigmentation. It also results in vision problems.

Louise only recently got glasses and was able to see her mother for the first time, according to her YouTube channel. In the video below, she gets adorably emotional while her mother sings “Amazing Grace” to her.

Watch the incredibly sweet interaction in the video below:

h/t GodVine

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To the People Who Said 'Let's Give It a Try'

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No.

It’s a word we hear a lot. As a 17-year-old, I’m told “no” sometimes on an hourly basis. This may have to do with the fact that I ask the difficult questions… but that’s a topic for another day.

See, if i had a dollar for every time someone has told me, “Sorry, but no, you cannot do that,” I would be rich — not let’s-buy-five-convertibles rich, but rich.

I have an inherited genetic condition called oculocutaneous albinism, that causes a lack of pigment in my skin, hair and eyes. Since my body doesn’t produce the coloring I need in my eyes to see, I’m blind. Because I have little pigment in my skin, I can become a lobster in less than five minuets when outside. The sun is my frenemy — without it, I can’t see a darn thing but too much and all I see is pure white.

Between my blindness and my extreme sun sensitivities, I cannot even begin to count the times I’ve been told “no” because it would be “too dangerous” for me to participate.

But I also don’t think I could count all the times someone has told me or my parents, “If she wants to, let’s give it a try.”

I can not begin to thank the people who looked past my disabilities and let me be a kid. Thank you.

Thank you for allowing me to participate on an equal level with my able-bodied peers.

Because it’s not every day a blind girl whose arch nemesis is the sun gets to play soccer and t-ball or swim competitively on a community team for 12 years or play in band and participate in marching band. It’s not every day someone like me gets to attempt more daring things like downhill skiing, ice skating, rollerskating, rock climbing, hiking and zip-lining.

marching band

Thank you, not just to the adults who have supported me throughout this time but also to the other kids who may have had to adapt their playing and wait around a little more so I had the chance to just be a kid.

I also love taking pictures and working on my photography skills. You can see some of my photos on my Facebook page at www.facebook.com/photoswithoutsight.

For all of December, The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
Hint! Some gifts don’t come in packages.

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What I've Figured Out So Far About Autism and Christmas

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Christmas in our home probably looks a lot different than it does in “typical” homes. We don’t leave cookies out for Santa or put on a big production about him coming. And when it comes to toys, well it couldn’t look any less typical.

photo 1 (1) My 7-year-old son has an obsession with things that are similar. Blocks, cotton balls Q-tips, marshmallows, spoons — basically any group of objects that are the same. He likes to take these objects and pour them from one bowl into another. At any given time, if you walk into our home, you will more than likely see him with two bowls and whatever random objects he’s selected for the moment. He’s had this fascination for as long as I can remember. I would be lying to you if I told you it didn’t bother me, because it does — or rather it used to, a lot

We’ve spent a lot of time in therapy over the past few years making attempts to try and get him to engage it typical toys like trucks, games, action figures. Every now and again, he’ll show an interest in something typical, but it’s rare. For the parent of a child with autism it can, at times, be hard to determine the difference between trying to teach them to try new things and attempting to put a square peg into a round hole.

The truth is, in the past when we’ve made these therapeutic attempts to try and get him to like typical toys, there’s been this tiny little tinge in my belly that says, “You’re trying to put a square peg into a round hole.” I remember reading a quote (I forget who said it) that essentially said, “The problem with pounding a square peg into a round hole is that you’re destroying the peg in the process.” That was a statement that had a pretty profound affect on me. That quote forced me to look at why this mattered so much to me. This entire time, had I been hoping to change my square peg into a round one? Before my son was born, I’d always assumed he’d be a round peg.  Everyone gets a round one, don’t they? I didn’t know anyone with a square one. I mean sure, I’d heard of square pegs, but square pegs are what happen to other people, right?

Well, as it turns out, I didn’t get a round peg. I got a square one. The day I found out I had a square peg, I was shocked and, truth be told, scared… damn scared. There was never a question about whether or not I’d be able to love him; I loved him the second I laid eyes on him. I was scared about whether or not that love would be enough. Could I be enough? Would I be able to give him every thing he needs? Could I embrace his sharp edges? Would I be able to reach deep into his corners? Along this journey we call autism, I’ve learned so many lessons, and one of the more important ones is this: to try and somehow force him to be round was a failure on my part to celebrate his square. 

photo.PNG-5 We no longer try to force typical toys in therapeutic sessions. Instead, sometimes I’ll buy him a new toy and if likes it, great! If he doesn’t, I’m not going to force it. Period. So that brings me to Christmas in our house. Finding presents for my little guy isn’t always easy. I spend a lot of time in the crafts store finding some things I think he’d like. And the upside to this autism-quirky-square peg of his is that I’m not in the middle of the toy section challenging another parent to a dual over the latest and greatest toy that all the round kids want. That’s what we in the biz like to call “winning.”  No, most likely you’ll find me alone somewhere in the crafts section stocking up on Popsicle sticks, soft craft poms or foam shapes. As I’m shopping for my special little square Christmas, I find myself thinking, “Maybe Christmas doesn’t come from a store, maybe Christmas perhaps means a little bit more.” (Who doesn’t love a good Dr. Seuss quote, am I right?) Christmas is a time for celebration! And in our case it means celebrating the gifts you receive, even if they’re not quite what you expected. Some of life’s greatest gifts are the ones you never saw coming. Celebrate your square.

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