NEW CASTLE, Del. (AP) - She is a woman of color deprived of pigment.
As a black albino woman, Sara Crawford-Jones confounds strangers for not fitting neatly on the color wheel of race.
“Why do you look like that?” they demand. “What color are you?”
“I’m black.”
“No you’re not.”
“They made me know I was different,” the New Castle fashion designer recalled recently, her golden blonde braids piled in a bun. “I was always the brightest girl in the room.”
“Then it just became normal,” she continued. “I’m the brightest in the room and that’s okay.”
On Aug. 16, the fair-skinned Crawford-Jones will speak about her “signature pigment” at the TEDxWilmington conference at the Queen Theatre. The event features speakers who overcame hurdles to achieve their potential. General admission tickets are $100 each and available at www.tedxwilmington.com.
Crawford-Jones’ presentation will focus on how her struggle for acceptance as a person with a rare, genetically inherited condition pushed her to thrive in a cutthroat, beauty-obsessed industry.
It is estimated that one of every 18,000 to 20,000 people born in America each year has some form of albinism, according to the National Organization for Albinism and Hypopigmentation. The condition, found in all racial and ethnic groups throughout the world, reduces the amount of melanin pigment formed in the skin, hair and/or eyes.
In Delaware, the state Division for the Visually Impaired has registered 74 adults and children with albinism, all of whom are legally blind or severely visually impaired. More than half live in New Castle County, according to Department of Health and Social Services spokeswoman Jill Fredel.
Most people with albinism have very light skin and hair, but levels of pigmentation can vary depending on the type of albinism. The more common Oculocutaneous albinism, which Crawford-Jones has, involves the eyes, hair, and skin. Ocular albinism involves only the eyes.
People with albinism may have extreme light sensitivity and experience vision problems, including depth perception and eye drift issues, that never go away completely.
The first sign in infants is usually involuntary back-and-forth eye movements called nystagmus, according to Dorothy Moore, a Wilmington ophthalmologist who treated Crawford-Jones as a child and more than 30 other albino patients over a three-decade career.
To properly diagnose the condition, Moore shines a light in her patient’s eyes. The translucent iris appears red because blood vessels inside the eye show through.
“It lights up like Christmas,” she says.
Wearing stylish specs, Crawford-Jones was born to brown-skinned parents who taught her to confront people who stared at her mysterious features.
“I used to tell her that you’re really special,” remembers Crawford-Jones’ mother, Carmella Crawford. “God made some people with a lot of vanilla and a lot of chocolate to try to differentiate.”
Mom recalls beach trips where she wore sunglasses so that she could scan the sand for anyone making her daughter uncomfortable. Then she whipped off the glasses and stared down the culprits.
“They’re still as ignorant as they’ve always been,” she says, explaining that people are routinely dumbfounded when they find out Crawford-Jones is her daughter.
Her daughter blames a lack of exposure.
“Some people see it as flawed,” the 33-year-old says. “I was just created differently. Everything that’s given to you is some sort of gift. You really just try to utilize it.”
As a Girl Scout, Crawford-Jones created sophisticated A-lines out of boring pleated skirts. Her cousin drew figures on paper and she filled in the wardrobe. She recalls coveting a green silk blouse at a Donna Karan outlet store.
“Fashion and style collectively is about self-expression,” she says. “I felt like, me being an albino, wanting to stand in that transparency and stand in that truth.
“This was a way for me to do that.”
Even today, the Padua Academy graduate feels an immediate kinship when she passes a person with albinism on the street. Doctors initially told her parents she’d never be able to see, let alone hand paint and accessorize blouses, blazers, and tutus.
Founded in 2005, Crawford-Jones’ brand, Anara Original, leverages her 13 years in the industry as a visual merchandiser and fashion consultant for recognizable names like Tommy Hilfiger, H&M, Express and Jos. A. Bank.
Taken together, those experiences taught her the basics of running a fashion business, from production workflow to visual branding. She also serves as director of the Women’s Business Center at First State Community Loan Fund, training female entrepreneurs.
No longer is Crawford-Jones flying under the radar, the student who hovered near the side of the blackboard to read the letters without obstructing others’ view. The fist fights with boys who pummeled her with insults like “You’re not pretty” and “You don’t belong” are now just part of the mortifying stroll down memory lane.
Hanging in the living room of her mom’s rancher is a glamor shot of Sara and Carmella. Both appear to be draped from the waist up in shiny Renaissance-inspired garb. Sara is several shades lighter than Carmella, but they share the same dainty nose.
“If I’m adopted, you can tell me, okay,” Crawford-Jones remembers telling her mother as a little girl.
Down the hall, inside a drafty guest room, is Crawford-Jones’ studio bursting with tulle. She initially dabbled in custom urban sportswear, before settling on bedazzled tutus.
It was a happy accident. Around Christmas a couple years back, Crawford-Jones wore a fire-engine red, midi tutu with a denim shirt as she posed for a photo with her husband, who is also her high school sweetheart.
The offbeat ballerina went viral. Moms ordered tutus decorated with satin bows, flowers or sequin mesh for their daughters’ first birthdays and adult ones to match. One time, Crawford-Jones had to raid True Value to find wrenches, nuts and bolts to attach to a blue-and-white tutu for a graduating mechanic.
She showcased her kids’ collection at Delaware Fashion Week in 2015 and left with a People’s Choice award. Children’s tutus start at $20 each and adult ones are $60 each.
“They’re whimsical,” says Crawford-Jones, who sells as many as eight tutus a week and is designing a bridal line. “A lot of people want to unleash that inner girl inside of them.”
Last year, Crawford-Jones published “The Playbook to Essential Style,” a how-to for women in business to build their wardrobes. Trenchcoats are timeless, she instructs, and quality basics are a must. She’s in the middle of a national book tour that features informal style conversations over lunch.
Crawford-Jones also runs the lifestyle blog, Blondie Jones, and offers a subscription service with direct access to her expertise.
Capitalizing on her TEDxWilmington talk, she hopes to relaunch her brand at a multi-part event titled “Pigment.” It will highlight designs in a muted color palette to bring awareness to albinism.
The condition continues to be misunderstood. People with albinism are depicted as assassins or evil torturers in movies.
And they are persecuted around the globe. In some African cultures, albinos are hunted for their body parts, which are believed to bring good fortune and are used in potions by witch doctors. In Tanzania, albino children are abducted and mutilated. Last year, the southern African country of Malawi experienced a surge in killings of people with albinism.
At the same time, models in the U.S. like Diandra Forrest, Shaun Roth and Ava Clarke showcase the striking beauty of people with albinism
“We’re trending right now,” says Crawford-Jones, who is here to stay.
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Information from: The News Journal of Wilmington, Del., https://www.delawareonline.com
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