When parents learn their child has Down syndrome, too often they’re met with sad eyes, hushed tones, an “I’m sorry” and a list of possible health concerns. Outside the doctor’s office they may meet stigma and judgment. “Nothing Down,” a nonprofit that advocates for people with Down syndrome and their families, wants to change that. When a new mom or dad learns their baby has Down syndrome, Nothing Down wants them to have an optimistic view of their child’s future. To help make this happen, its co-founder, photographer Julie Willson, has been releasing photo series that show both the outer and inner beauty of people with Down syndrome. Her latest project, “Down Syndrome Is Beautiful,” features 21 people, ages 1 to 38, dressed in formal wear. The shoot took place on Feb. 20, but the photos are now being released to honor World Down Syndrome Day on March 21.
“When people see these pictures, we want them to see the same beauty that we are blessed to live amongst every day,” Willson told The Mighty in an email. “And although our participants all look gorgeous in their tuxedos and gowns, it is their inner beauty that we hope shines through.”
Willson first made headlines when she did a photo shoot in October, Down Syndrome Awareness Month. That series, featuring 11 young people with Down syndrome, was inspired by Willson’s late sister, Dina, who had Down syndrome. Dina passed away four years ago from heart failure. She was 35.
The incredible response to the portraits inspired her to release a video again featuring those families, where they each shared messages to new parents of children with Down syndrome. The video quickly went viral, prompting Willson to co-found Nothing Down with Shannon Daughtry, one of the mothers from the October photo shoot. Another mother from the shoot, Colleen McGuire, joined the board and is now the nonprofit’s secretary.
Willson hopes Nothing Down will help educate and advocate for pregnant moms and new parents who are receiving their children’s diagnoses. Their main mission is to provide educational materials, including a DVD of their viral video, and a resource packet to doctor’s offices, hospitals and genetic counselors. In doing so, they hope to offer encouragement to parents.
“Expectant parents are too often shown a very pessimistic view of what their future might hold, with a concentration on all of the possible challenges. They are not told of the amazing blessings that they are about to receive or how their lives are about be forever changed for the better,” she told The Mighty. “We want to dispel many of the myths and stereotypes and show the world how beautiful and amazing individuals with Down syndrome are.”
This year marks the 11th anniversary of World Down Syndrome Day (WDSD). The date (March 21) is chosen for the trisomy of the 21st chromosome in people with Down syndrome. Each year, people are invited to join the “Lots of Socks” challenge on WDSD. The idea is to wear fun and wildly designed socks so people ask you about them and you can spread awareness.
“The reality for many is that prevailing negative attitudes result in low expectations, discrimination and exclusion, creating communities where children and adults with Down syndrome cannot integrate successfully with their peers,” the WDSD website reads. “But where children with Down syndrome and other disabilities are given opportunities to participate, all children benefit from this and environments of friendship, acceptance, respect for everyone and high expectations are created.”
View more of the “Down Syndrome Is Beautiful” series below, and visit Nothing Down for more information.