Though understanding and acceptance of Down syndrome has increased dramatically in the past century, it still carries an unfortunate stigma. Indeed, though most babies born with Down syndrome go on to live happy and loving lives, parents still often choose to abort fetuses that test positive for the condition. Photographer Julie Willson is hoping, though, to change that.
Julie’s life, in fact, was touched by Down syndrome in the most personal of ways, as her sister Dina was born with the condition in 1975. Her parents were told that Dina wouldn’t live to see her sixth birthday – then, when she reached five, the limit was reset to eight years old. Dina, however, continued to surpass expectations.
Back in those days, people with Down syndrome were still referred to as “mongoloids” and generally given short shrift in life. Luckily, though, Dina was born into a loving family, and her parents doted on her.
Unfortunately, however, Dina passed away in 2011, at the age of 35, from congestive heart failure. Julie was, naturally, devastated by the loss of her sister – but her time with Dina nevertheless encouraged the photographer to embark on a very special project.
“The abortion rate of those who find out that their child may have Down syndrome is at 92 percent,” Julie wrote in a post for Bored Panda. She was shocked by that number, and afraid that people are not realizing what an amazing experience raising a child with Down syndrome could be.
Julie’s photography project, then, aims to help rectify that. It features gorgeously shot portraits of children with Down syndrome, showing off as a result her subjects’ beauty and individuality. “I hoped that my photos would be shared and that people would see how blessed these families are,” she explained to Bored Panda.
Julie had actually long mulled over the possibility of embarking on such a venture, but it wasn’t until August 2015 that she voiced her idea to friends. They encouraged her to put out a call on Facebook for child subjects with Down syndrome, which Julie duly did – and the response was overwhelming.
In fact, people all over the country got in touch with Julie; in the end, she picked 12 children from those put forward to be part of her shoot. Happily, children’s online clothing stores Posh Peanut and Closet of HJK were also completely willing to donate mini-wardrobes to Julie after receiving requests from the photographer.
“I was caught off guard that the boutiques said they would donate the items 100 percent,” Julie added in an interview with New Jersey newspaper The Current of Egg Harbor Township. “I couldn’t wait… though I wish my sister was there to enjoy it with me.”
What’s more, Julie also produced a video, titled “There’s nothing down about Down syndrome,” as a companion piece to the photo shoot. She uploaded a clip of it to YouTube in November 2015, accompanied by the thoughtful words, “Down syndrome is sadly looked at as a negative thing, but after watching this video you will see how wonderful it can be.”
Julie and Dina’s mom Maryann Scoppa, meanwhile, was also present at the photo shoot – and, by all accounts, it brought back some bittersweet memories for her. “There were tears of joy and of sadness [from Maryann], because she was remembering Dina at that age,” Julie explained to The Current of Egg Harbor Township.
And other families who attended also spoke on the video clip about their own children. Many were very vocal about how having a Down syndrome child had changed their lives for the better; others also related some of the hugely positive aspects of raising offspring with the condition.
Meanwhile Julie, to her credit, declined any payment from parents wanting to take home a portrait of their child. She didn’t want to make money from this aspect of her work – just to, hopefully, bring a new awareness to the subject of Down syndrome.
“If I can change anyone’s mind that is pregnant, that’s my goal,” she told The Current of Egg Harbor Township. “I hope the pictures raise awareness so that a mom who is pregnant with a baby who has Down syndrome will realize it is not a scary thing – even if it is just one family who may be contemplating terminating their pregnancy.”
And perhaps Julie’s project will indeed make parents-to-be pause for thought. It’s a touching and beautiful step towards further destigmatization of Down syndrome and those who have it.
That awareness-raising also may be aided through the increasing visibility of those with Down syndrome in the public eye – particularly on television. American Horror Story actress Jamie Brewer and Glee’s Lauren Potter, for example, were both born with the condition and have both shone on the small screen in recent years.
Sadly, despite the great strides made towards progressing public opinion and treatment towards those with Down syndrome, not everyone is thoroughly open-minded. The abortion rate of fetuses that may have it speaks for itself – and then there’s the continued bullying of children and young adults with the condition.
News stories still abound, unfortunately, of people with Down syndrome being picked on or even hurt. The big difference now, though, is that the perpetrators are more often than not punished and told that such behavior is unacceptable, and that others fight keenly on behalf of the victims.
So change is coming, albeit slowly, and Julie wants to help it along. But it’s all because of the impact Dina had on her life. “Dina completely inspired my photo shoot,” Julie told Yahoo! News. And the snapper also took to her blog after the completion of the project to pay another heartwarming tribute to her sister.
“Thank you to everyone who helped make my vision a huge success,” she wrote. “My sister Dina is most definitely looking down from heaven, giggling away and so happy.”