The Down Syndrome Trailblazers

Eugene Tossany Features, Lifestyle, Talk of Tysons

A World Down Syndrome Day Exclusive

By Eugene Tossany, Author of The Down Syndrome Superhero series

Our society has come a long way since the 1950’s, when Down Syndrome (DS) individuals were categorized as non-functioning mongoloids and locked up in institutions. In retrospect, the children who were brought up in an often-cold environment are today’s adults who have been paving the way for a new generation of proverbial and science-fiction superheroes. Their sacrifices have not gone unnoticed.

The growing list of world-renowned Down Syndrome celebrities, public speakers, authors, athletes, and academic achievers is quickly reaching a pinnacle. They are pushing the limits of what can be accomplished with a little extra effort and a sustainable support system. As the parent of a DS kid, I sometimes wonder if she might be hiding a superhero cape and leotards in her room! She seems to have an unseen internal drive that propels her to tear down barriers.

We recently contributed autographed books to Mikayla Holmgren’s Dream Big Without Limits initiative. She was the first Down Syndrome Miss USA state pageant contestant (2017). Our daughter was tickled pink when we watched Mikayla’s online fashion show. Her little face was glowing with excitement and joy as she mimicked some of Mikayla’s dance moves. One of her passions is singing and dancing, as well as encouraging family members to sing and dance with her. This is a community that knows how to uplift and support one another, not just with kindness, but also with humility and gratitude.

Let us not forget the earlier DS Hollywood trailblazers like John Taylor, The Seventh Sign, who did not receive notoriety for his important film role. And there have been exceptional Advocates, such as David Eagan, international inclusion spokesperson. Their continued efforts are just so they can be appreciated, and to maintain dignity. They have cleared a path for younger generations to have role models, and maybe a few movie posters with the likes of Zack Gottsagen, from Peanut Butter Falcon.

Some of the recent national and world headlines you may have seen include Kayla McKeon, Capitol Hill Lobbyist, Grace Strobel, first American DS model, Chris Nikic, Ironman Triathlon finalist, and Sofia Jirau, first DS Victoria’s Secret model (respectively pictured). These pioneers are one of many examples of our country’s extraordinary pivot to provide the Down Syndrome community with equal opportunities.

Is it all glitz and glam? No. Overachievement is not a requirement for happiness. It is perfectly understandable if families choose to shun the limelight and just enjoy each other’s existence. There are a multitude of Down Syndrome organizations, such as Down Syndrome Association of Northern Virginia (DSANV), and various Facebook support groups to help our loved ones along the way. 

From my years of involvement with support groups, I have seen expectant parents share their concerns, anxieties, and curiosities with community members – requesting input on what to do next. My advice? Breathe. You’ve got this! And if you need a helping hand, then there are plenty of resources: from intervention services to public school aides and behavioral development therapists. There is an advocate waiting to be your champion, wherever you are.

In closing, I would like to acknowledge the diligent caregivers, medical specialists, intervention teachers, therapists, and communities who understand the importance of standing up for these beacons of hope. One of my favorite news articles was a recent occurrence, in Macedonia, where a neighborhood pulled together to protect a Down Syndrome child who was being bullied. Stevo Pendaroski, North Macedonian President, intervened with a public statement and personal appearance at 11-year old Embla Ademi’s school, where he started a viral sensation: 

“They [Down Syndrome children] should not only enjoy the rights they deserve, but also feel equal and welcome in the school desks and schoolyard. It is our obligation, as a state, but also as individuals, and the key element in this common mission is empathy.”

Stevo Pendaroski, President of North Macedonia

1 National Association for Down Syndrome | History of NADS

2 About David — David Egan | Athlete, Self-Advocate, and Partner in Helping Create a Better World (davideganadvocacy.com)