Notjustdown: More acceptance for trisomy 21

What was this pity for? Even at the age of seven, Tabea Mewes was irritated by the reactions to the birth of her brother Marian. No congratulations. No "May I come and see the baby?" Instead, her classmates made comments like, "I'm sorry, that everything is wrong with your brother." Marian Mewes has the trisomy 21 gene variant. "This scares off many because they simply have no idea," says his sister.

Giving courage and strength – everyday life with Down syndrome

During her school days, Tabea Mewes invited friends to her home to break down prejudices. Today, the media scientist is still doing this, but on a larger scale: on Instagram and her blog "Notjustdown", the 30-year-old and her brother show what everyday life with down syndrome can look like. The award-winning social media project has more than 25,000 followers and posts are often liked thousands of times. Many thank you for the educational work. "For example, very few people know how broad the cognitive abilities of people with Down syndrome are. Most are not severely disabled, some are average intelligent."

Marian Mewes cannot speak in an understandable manner for everyone. "He has something like his own language with lots of special words," says his sister. "As soon as you know him, you can talk to Mari almost normally. And in our opinion there are more important things than verbal communication anyway." Marian, 22, still lives with her parents near Bielefeld. Tabea Mewes has an assistant position at the local university and visits him at least once a week. Ultimately, Marian decides what is shown on "Notjustdown". In one picture he is standing in front of the kindergarten, where he is currently doing an internship. Another photo shows him designing the layout for his own t-shirt line. The inscription "Inkluencer" is on it, a mixture of inclusion and influencer. In many videos you can see the siblings dancing. One of Marian Mewes ’favorite song lines is" Young man, there’s no need to feel down "from" Y.M.C.A. ".

Among the posts are comments such as "Pure lust for life, groovy" and also: "I have a boy with Down syndrome myself, 17 years old, and EVERYTHING you do gives me courage and strength when it is difficult." Tabea Mewes says that she knows exactly what it means: from an early age she has watched her parents' struggle for Marian's rights. For the place at a suitable primary school, for career prospects outside of a handicapped workshop, for financial security, also simply for acceptance.

Equal opportunities instead of parallel society

About 50,000 people with trisomy 21 live in Germany, estimates the research institute Touchdown 21. They are more present in everyday life than they used to be: children with trisomy 21 are in demand as models for posters for the inclusion debate, and fashion companies are already booking them for theirs Advertising. "However, acceptance has not grown," says Tabea Mewes. "The attitude is rather: a disabled child no longer has to be today." Experts estimate that around nine out of ten pregnant women in Germany have a trisomy 21 stopped.

Tabea Mewes doesn't want to judge it. But it wants to prevent people with disabilities from having to live in a parallel society. Should her brother do a job in a handicapped workshop for 40 years that will bore him intellectually after a week? For 80 euros a month? Even though he received so much recognition during his internship in kindergarten? Tabea Mewes has observed how much confidence Marian has gained through her project. She wants equal opportunities. "Ten years after the UN Disability Rights Convention came into force, we are still miles away from it." "Notjustdown" is their attempt to create points of contact and find allies. In the meantime, she and her brother go to lectures and visit school classes. "Online is good," she says. But offline is the goal.

Tabea Mewes, 30, comes from Schloß Holte-Stukenbrock near Bielefeld. "Notjustdown" was created in 2017 from her master's thesis in media studies. It tells the story of inclusion from a sibling's perspective. In addition to Marian and Tabea Mewes, her brother Tilman also appears in the articles. In 2018 the project received the Golden Blogger Award, in 2019 the Smart Hero Award.

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