Meet the Models With Down Syndrome Who Are Changing the Face of Beauty

It’s not scary. It’s exciting.

For the family of Sofia Sanchez — a 7-year-old girl with Down syndrome who explained her condition in those terms in a recent video that went viral — and for the entire Down Syndrome community, there can be no clearer message to promote awareness of the condition during National Down Syndrome Awareness Month this October.

“We love that not only does the video leave people feeling good — hard to not have a smile on your face after watching it — but it gives people a glimpse into what people with Down syndrome think and feel, which is that they love life. Just like all of us,” Sofia’s mother, Jennifer V. Sanchez, tells Yahoo Beauty via email.

Sofia is one of a growing number of youngsters with Down Syndrome who, over the past years, have become increasingly visible in the public eye. They include models Madeline Stuart and Jude Hass (the first male model with Down syndrome to appear on the catwalk during this year’s New York Fashion Week), and television stars Blair Williamson and Jamie Brewer (she also participated in New York Fashion Week).

Their growing numbers and greater visibility in the media, entertainment, advertising, and fashion are truly inspiring for both the Down syndrome community and for society at large, says Sara Hart Weir, president of the National Down Syndrome Society (NDSS). And not just because these individuals are pushing the conventional standards of beauty and public visibility but because they are pursuing their dream in a society that has become much more inclusive.

“Not every person with Down syndrome wants to be a model or an actor, but when they see people like Madeline and Jude, who are doing their thing and are achieving success on their chosen career path, they feel inspired to purse their own aspirations,” Weir says.

A changed world of opportunities

Today, around 1 in 750 babies is born with Down syndrome, a congenital disorder that usually occurs in individuals with an extra copy of chromosome 21 that affects their physique — height and facial features, among others — and causes varying degrees of intellectual impairment.

But for these infants, the world is a far different place than it was when Williamson, 37, was born. Back then, says his mother, Gail Williamson, founder of the talent agency Down Syndrome in Arts & Media, whose clients include Sanchez, Hass and Brewer, “I could walk into a restaurant with Blair on my hip and silence the place.”

Even more change has occurred since 15-year-old Hass’s childhood.

“When Jude was 2, I had a daycare worker say to me that the most I could ever hope for him is that he would be a greeter at Walmart,” his mother, Rachael Wolverton, recalls.

That would have been fine if Jude wanted to be a greeter at Walmart, she says, but over the years, he, like any other child, has wanted to be any number of things: Spider-Man. A postal worker. A yoga teacher.

His mother has encouraged him throughout to be anything he wanted to be— she even got certified as a yoga teacher when Hass went through that phase — and today, Hass leads as full a life as any other 15-year-old. He has a part-time job, and he has a girlfriend. He works out at the gym and is on a competitive dance team. He does his own and his younger brother’s laundry.

“Jude is an extremely charismatic individual who has always loved the camera,” Wolverton says.

Hass has his heart set on a modeling career, and he has been modeling since his early childhood, appearing in the brochures and ads for businesses near his family home.

When he participated in a fashion show in Austin, Wolverton says, “they loved Jude so much, they asked him to come to New York Fashion Week.” She adds: “A lot of parents want their kids to be models, but this doesn’t come from me, it comes from Jude — he is naturally gifted, he’s never shy, never nervous. He lives for this stuff.”

Ditto for Madeline Stuart, the 19-year-old Australian model who received worldwide appreciation for her presence on the catwalk at both the 2015 and 2016 New York Fashion Week and is the face of a line of handbags made by ecofriendly brand everMaya.

“I believe my presence has been received so positively that people are happy to be inclusive — no longer is it unusual or taboo to promote disability,” she writes in an email prepared with the help of her mother, Roseanne Stuart. “The process has been quite difficult as being the first [model with Down syndrome on a catwalk] and changing people’s beliefs and expectations can be a struggle, but it has been worth it and I feel it has had a very positive outcome. … There all sorts of people in the world and the fashion industry is now starting to represent everyone.”

The increased visibility of models and other public figures with Down syndrome, combined with strong advocacy efforts for greater inclusion over the years and greater overall awareness, is resulting in a more open society that encourages and enables people like Katy Rommel, a 32-year-old woman with Down syndrome in State College, Pa., to lead a busy, full life.

Rommel — who enjoys reading, dancing, being with her dogs, and ceramics — attended Penn State University’s LifeLink Program, which gives special-needs students between the ages of 18 and 21 an opportunity to interact with students of their own age in an environment that is socially and academically conducive to continued growth. She danced with Penn State’s longstanding dance company, Orchesis, and participated in THON, the university’s annual 46-hour dance marathon to raise money for the fight against pediatric cancer. Today, Rommel has a full-time job at a nursing home and continues to take dance lessons.

“We have found the community here to be accepting, open, and encouraging from the very beginning,” Rommel’s mother, Nanci, says.

Continued debate despite improved medical treatment

Despite commonly held beliefs, most people with Down syndrome can be productive members of society and are socially interactive, says Ira Lott, director of the Down syndrome program at University of California, Irvine.

“In order to preserve these abilities, the treatment of potential medical complications assumes major importance,” Lott says, “and there are now age-specific guidelines for health maintenance in Down syndrome.”

As a result of energetic and robust treatment for many medical conditions affecting people with Down syndrome — thyroid problems, seizures, sleep apnea, and certain immunological issues, among others — there has been a marked improvement in their life expectancy, Lott says.

However, there has also been a concurrent refining of the screening tests that detect Down syndrome in utero, and this has fueled the ongoing ethical polemic —particularly in Europe — over the termination of such pregnancies. (A few weeks ago, British actress Sally Phillips of Bridget Jones fame, who has a son with Down syndrome, addressed the issue in a new documentary).

In Iceland, for example, which introduced Down syndrome screening in 2000, the test has become so commonplace that just about every pregnant woman opts for it.

Dutch advocacy organization Downpride, states that termination rates for Down syndrome pregnancies vary from an average of 67 percent in the U.S. to 98 percent in Europe.

According to Icelandic photographer Sigga Ella, society still lumps people with Down syndrome into one box. Her highly acclaimed 2015 series of portraits of 21 people with Down syndrome was aimed at changing this mindset and highlighting their individuality.

“My goal was to show diverse personalities in a broad age range, to show that although they share the syndrome, they are all unique,” Ella says.

In general, society still approaches disability with “fear, pity, and uncertainty,” says Katie Driscoll, founder of Changing the Face of Beauty, an organization that works with brands to include people with disabilities in their advertising. Changing that perception is a slow and ongoing process, but greater public visibility can really help, Driscoll says, not least in promoting the idea that people with disabilities — Down syndrome and others — are consumers like everyone else.

“The more companies can show in their ads and marketing that this population exists, that they buy fashion, and that they are valued consumers, the greater the visibility and understanding of people with disabilities, which will also help skyrocket their aspirations,” she says. “The face of disability is changing every year — when we know more, we do more, and we need to know our media and advertising are rising with us.”

The increased exposure is a strong tool in the fight for equal employment opportunities for people with Down syndrome, says NDSS’s Weir.

“When we see individuals with Down syndrome in fashion shows, in brochures, and in ads, that really promotes inclusion and employment opportunities,” she says. “For us, the next step is really employment.”

And that’s what Hass wants. To work — as a full-time model.

“It’s great Jude is getting out there, but he doesn’t just want to be a mascot — he wants this as a career,” Wolverton says. “The day people like Jude no longer make the news is when we’ll know we’ve made it and that society is truly inclusive.”

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