Sonea Sonnenschein, a vibrant 15-year-old from Cologne with Down syndrome, uses dance and social media to promote visibility and inclusion for individuals with disabilities. With over 24,000 Instagram followers, she shares her journey, educating others about Trisomy 21 and advocating for acceptance. Sonea, who dreams of becoming an actress, emphasizes the importance of recognizing her beyond her condition, inspiring others while highlighting the challenges faced by the Down syndrome community.
Embracing Life Through Dance
When Sonea Sonnenschein takes to the dance floor, she truly shines. With grace and enthusiasm, she sways her arms to the rhythm of hits from Bruno Mars and Miley Cyrus. Each determined side-step radiates her joy. This spirited 15-year-old from Cologne has amassed over 24,000 followers on Instagram, where her reels go beyond just dance. In some videos, she proudly proclaims, ‘Surprise! Down syndrome is not contagious.’
Sonea explains the science behind her condition, noting that Trisomy 21 occurs because chromosome 21 is present three times in every cell of her body. She emphasizes that there is no need for anyone to insult her if they find her speech difficult to understand, attributing it to having ‘a larger tongue and floppy muscles’ – similar to the feeling of having a numb mouth after a dental visit.
Visibility for the 50,000
In Germany, approximately 50,000 individuals live with Down syndrome, yet their daily lives and challenges often go unnoticed. Sonea Sonnenschein is determined to change this narrative. She began sharing her journey on Instagram six years ago, inspired by her mother, Katharina Weides, who previously ran a family blog. ‘Writing helped me navigate the overwhelming emotions I faced following Sonea’s diagnosis,’ Katharina reflects.
Through engaging blog posts, she highlighted the beautiful aspects of life with a child who has a disability. Katharina soon realized that Sonea possessed a uniquely open and courageous spirit, which inspired the blog’s name: sonea-sonnenschein.de.
Building Connections
Katharina’s posts fostered connections with others facing similar challenges and professionals in the field, creating a platform for discussions on inclusion and health issues related to Down syndrome, which can often involve heart and metabolic complications.
Becoming an ‘Inkluencerin’
As Sonea matured, Katharina recognized the importance of her daughter having a voice in their shared narrative. This realization sparked the creation of Sonea’s Instagram channel. Initially, they explored various content styles, as role models were scarce, according to Katharina, a social media manager in online marketing. Today, they form a well-coordinated duo: for intricate topics, they include subtitles and explanatory texts, while playful content features statement shirts that read ‘Inkluencerin!’
Sometimes Sonea shares simple yet powerful thoughts: ‘Of course, inclusion might not matter to you. But everything changes for me.’ Her father, René, often assists with the visual aspects, and her twelve-year-old brother, Vincent, sometimes joins in on the dance routines.
The family collaborates to brainstorm ideas. ‘Sonea often suggests topics that I wouldn’t think of,’ Katharina notes. During their video calls, it’s clear that Sonea wants to be appreciated for who she is, not defined by her Down syndrome. She passionately states, ‘I find being stared at and reduced to my Trisomy discriminatory!’ Her Instagram reels showcase her diverse talents: from earning a green belt in Taekwondo to interning at a daycare and interviewing a volunteer at a sports event. Her message is clear: ‘I can achieve much more than what you think.’
This inspiring message resonates with other children and their families. ‘We have followers who tell us they named their child Sonea after us,’ Katharina shares. ‘Some are pursuing social pedagogy because they want to improve opportunities for children with Down syndrome after connecting with us online.’ Unfortunately, many individuals with Down syndrome still end up in sheltered workshops, with fewer than ten percent finding employment in the mainstream job market.
Looking Ahead
Sonea is currently in the 9th grade at an inclusive comprehensive school and is on the verge of earning her special education diploma. What’s next for her? She dreams of becoming an actress! Recently, when a grocery chain sought children for a Christmas commercial, she eagerly applied and was invited to audition. Although she didn’t land the role, Sonea remains undeterred. She has learned to find calmness in challenging moments. ‘You have to breathe deeply,’ she advises. ‘And keep dancing.’