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Meet the Instagram Stars of the Down Syndrome Community

A new generation of social media stars with Down syndrome are coming to prominence online, challenging myths about their condition to thousands of fans.
March 29, 2016, 1:40pm
Photo of Madeline Stuart via Instagram

Despite the years of discrimination against and misinformation about the condition, a new movement is taking place across America to recognize people with the condition and their ability to live full, happy lives. As in all things, one of the biggest catalysts of this cultural shift is social media.

"It's an incredible way for the general public to learn more about what individuals with Down syndrome can do and achieve," says Sara Hart Weir, the president of the National Down Syndrome Society. "We're telling the real stories about Down syndrome, and social media has given us the ability to tell those stories faster and to a wider audience than we could have ever imagined."

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One of the most visible faces of Down syndrome online and in the media is Madeline Stuart, a 19-year-old Australian woman who gained international attention after her mother posted her modeling portfolio online. After Stuart attended a fashion show and asked to become a model, her mother, Roseanne, was initially enthusiastic about the idea—she thought it would encourage Stuart to adopt healthier habits and lose weight (obesity is a large problem faced by adults with Down syndrome, who tend to gain weight more easily and live less healthy lifestyles than their peers).

"I don't ever stop Maddie from doing anything unless it's dangerous or illegal," Roseanne says over the phone. "She's 19, and when I was 19 I'd do whatever I wanted. I believe that just because she has Down syndrome doesn't mean she should have any different life than what I had. Why should she? She's a person just like I am."

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Down syndrome is a genetic condition that occurs when a child is born with an extra 21st chromosome. According to the National Down Syndrome society, over 400,000 Americans currently have Down syndrome, making it the country's most common genetic condition. People born with Down syndrome are affected with low muscle tone, physical and cognitive delays, and a distinctive physical appearance. Historically, people with Down syndrome have been frequently marginalized, discriminated against, and excluded from the mainstream; they were also traditionally institutionalized and kept away from their families and larger society and placed in institutions without appropriate medical care or education. Even more tragically, many people with with the condition died years early due to neglect and mistreatment; according to the Global Down Syndrome Foundation, the average life expectancy for a person with Down syndrome in the 1980s was 28.

After working with a photographer on Stuart's initial portfolio, Roseanne posted the photos online. She expected the pictures to be well received, maybe even popular, but she had no idea how much attention they would receive. "I didn't understand what viral was until viral really happened. I thought she'd get 2,000 likes on Facebook—I didn't think she'd get six-and-half-million views in the first two weeks!"

Since Stuart's modeling portfolio has gone "viral," she haswalked in New York Fashion Week, worked on a line of handbags, starred in a bloggable Disney Princess makeover, and kept in touch with over 120,000 Instagram followers. Roseanne now works as her daughter's manager full time; Stuart receives up to a hundred messages a day from fans who've been inspired by her. "We get messages that say, 'I was going to give up on college, but if you can do this, I can do this, and I'm not going to give up on college.' There are parents that say, 'You give me hope that my child has a future.' There are more people without disabilities that contact Madeline than with. She's the underdog, the person you wouldn't expect to achieve but they work hard at something."

When Amanda Booth, a model living in Los Angeles, learned that her son Micah had Down syndrome she turned to social media to learn about the lives of children with the condition and to begin to imagine what life for her son would be like. "I read things that were just words on the Internet about Down syndrome," Booth tells me, "but with social media you can connect with people and actually see what these babies are capable of doing. It made everything seem really light instead of really heavy." Booth had already created an Instagram account, "Life with Micah," for Micah's photos, but when he was diagnosed with Down syndrome she realized she could use it as a platform to educate other families on what life was like with the condition, paying the comfort she had gotten from other accounts forward. The world quickly took notice of her adorable son. Soon, the beautifully styled and photographed account gained nearly 50,000 followers.

Along with the attention "Life with Micah" has received, Micah was recently offered a modeling contract after joining his mother on set for several shoots. Micah is now a model for "Changing the Face of Beauty," a campaign that promotes inclusion for people of all abilities in advertisement. "I don't expect someone to book Micah because he has Down syndrome," Booth says. "What I hope is that they just won't count him out because he has it. If you're looking for a baby that has brown hair and blue eyes, all I'm hoping for is that you consider him, too. I don't want my kid to book something because he's special needs—I want him to book something because he happens to be right for a job."

But people with Down syndrome don't need a modeling contract to get in on the Instagram action. Heather Avis highlights life with children with Down syndrome on her blog The Lucky Few and her Instagram account "Macy Makes My Day," which has 64,000 followers. Avis turned to social media to highlight her journey as a mother of three adopted children, two of whom have Down syndrome. Inspired by a friend with a popular Instagram account, Avis began to share moments in her children's lives in order to normalize Down syndrome, demonstrating that a family with a child with the condition is like any other.

"Once you have a kid with Down syndrome in your life, it is normal," Avis says. "In my mind, we are as normal as a family can be. They're your kid, and the DS becomes very secondary. We wake up, and eat breakfast, and go to school, and do all the things that people who don't have Down syndrome do in a day. Having a kid with Down syndrome is much more normal than it is not."

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The appeal of Avis's various accounts goes beyond the special needs community—it's hard not to smile at videos of her daughters Macy and Truly singing and dancing along to Taylor Swift, or at her son August's obsession with Michael Jackson. "People will say, 'This makes my day,' or [they'll] tag a friend and say, 'Sorry your day's been sucky; watch this,'" Avis explains. "It's not always happy. I'll post the struggles of dealing with a society that treats my children as 'less than.' But [for] the majority of my posts, I am choosing joyful moments in the day. That's the thing about Instagram that people have to remember: This is a teeny tiny glimpse, in squares, of my life. I think we have enough struggle; I'd rather keep it positive."

Another Instagram star bringing new awareness to Down syndrome is Jimbo is the Man a non-verbal man with Down syndrome who is described in his bio as "54 and Rockin' the Extra Chromosome." Jimbo is featured on a popular Instagram account run by his sisters and nieces. Despite the fact that Jimbo can't speak, his infectious energy and spirit—complimented by his nieces' savvy use of Dubsmash videos, Beyoncé references, and Ryan Gosling memes—bring his posts hundreds of likes. Jimbo's account is especially important because older adults with Down syndrome rarely get attention, and there aren't many visible role models who have aged with the condition. Many members of the Down syndrome community consider Jimbo a celebrity and look to him as an example of what their children could be like when they age.

"Following Jimbo has also caused my older children, only ten and six, to wonder about what their baby brother's [with Down syndrome's] life will be like when he grows up," one fan wrote. "They want to take turns caring for him like Jimbo's sisters." In turn, Jimbo's sister Pam blogged that Jimbo's fans have given him and his family just as much as they have received. "The families that we have found through this community have inspired us more than you all will know. If our parents could have had the connections that we all have today, they may not have felt alone in their journey."

Although Macy, Jimbo, Stuart, and Micah might be the standouts of Instagram now, more and more people are getting in on sharing their stories and reclaiming Down syndrome's image every day. Although it started as the title of Avis's blog, #theluckyfew, has now become a popular hashtag across the social media platform for people sharing photos and stories of their loved ones and normalizing the condition. "So few people have someone with Down syndrome in our lives, and those of us who do are really lucky," says Avis. Searching the hashtag #theluckyfew now brings up 22,000 posts, many of which have thousands of likes. Churning out quirky T-shirts and hashtags—like #nothingdownaboutit or "#chromiehomie—the community is transforming the public perception of Down syndrome, shedding light on the condition as something that makes a person unique and a difference that should be celebrated.