March 21, 2025 marks a significant moment for advocates of individuals with Down syndrome, as organizations around the world launch campaigns highlighting their need for inclusion in decision-making processes. CoorDown, an Italian organization dedicated to empowering individuals with Down syndrome, has spearheaded a powerful campaign under the banner of "No Decision About Us Without Us." This campaign, launched in coordination with World Down Syndrome Day, underscores the vital importance of having people with disabilities actively involved in decisions affecting their lives.
CoorDown’s initiative has included the release of a poignant musical created in collaboration with the New York-based creative agency Small and the support of Fondazione Cariplo. The musical features well-known actress Caterina Scorsone of Grey’s Anatomy, who is not just a familiar face but also the mother of a child with Down syndrome. This connection adds a personal touch to the campaign that reinforces its message about the necessity for inclusivity.
The title of the musical, "No Decision About Us Without Us," captures its essence well. The creative work blends music, dance, and compelling narratives to convey a universal message: individuals with disabilities wish to play an active role in shaping their destinies—whether it is in family, education, employment, or healthcare. According to the World Health Organization, there are an estimated one billion people with disabilities globally, which accounts for around 15 percent of the world’s population. Yet, despite this significant demographic, their voices are often left unheard in spaces where crucial decisions are made.
Martina Fuga, president of CoorDown, emphasizes the urgency of this campaign, stating, “After years of slow but significant progress toward a more inclusive world, we face a troubling setback.” Her statement reflects the ongoing struggles faced by people with disabilities and their supporters in advocating for meaningful change. The campaign not only urges for representation but also calls for a cultural shift to ensure that the contributions of individuals with disabilities are recognized and valued.
The message from CoorDown resonates widely beyond Italy. The campaign has garnered international support, involving multiple associations such as Down’s Syndrome Association UK, Down Syndrome Australia, National Down Syndrome Society, Canadian Down Syndrome Society, Global Down Syndrome Foundation, Together Academy, and New Zealand Down Syndrome Association. This broad coalition amplifies its message, making it clear that the cry for inclusion is a global one.
In celebration of World Down Syndrome Day, various activities and meetings are being held worldwide, including at the United Nations in New York and Geneva. The campaign's central theme, “Improving our support systems,” brings attention to the ongoing challenges that individuals with Down syndrome and their families face daily. Down Syndrome International highlights that many of these individuals are still denied quality education, proper healthcare, and employment opportunities. The need for societal change is immediate and essential.
Accompanying the musical and campaign, the Associazione italiana persone Down (Aipd) has produced a video showcasing the struggles of young individuals with Down syndrome. In their heartfelt testimonials, they express the obstacles they encounter in educational settings, workplaces, transportation, and health care. Gianfranco Salbini, president of Aipd, passionately believes in the importance of having individuals with Down syndrome in positions of influence. He states, “Our association has always held that the protagonism of individuals with Down syndrome is necessary and fundamental to building a better world for them and for all.”
The powerful musical produced this year once again reinforces the core message of the campaign. With the slogan “No Decision Without Us,” the video features portrayals of individuals with various disabilities demanding their voices be heard in the discussions about their futures. This includes Mia Noelle Rodriguez, who expresses her desire to choose her own wedding attire, countering parental expectations, and a young man in a wheelchair who reminds planners of a train station of the significant barriers posed by stairs.
Other scenarios featured show a short-statured nurse unable to reach medical supplies on high shelves, a deaf person unable to hear fire alarms, and a visually impaired individual struggling with touch screens at an airport. All these examples illustrate that the frustrations faced by individuals with disabilities stem from decisions made without their input.
In her reflection on these experiences, Martina Fuga poignantly notes, “We all know the burden of suffering decisions made by others without being able to express our voice.” She further emphasizes that the lived experiences of individuals with disabilities require urgent recognition and responsiveness. The call to action is clear: to shape a framework of society where everyone’s voice matters, especially those traditionally marginalized.
As initiatives like CoorDown's and Aipd's gain traction across social media platforms, including the hashtag #wdsd2025, the global community of individuals with Down syndrome and disabilities are standing in solidarity. Until March 21 and beyond, these platforms will share stories of experiences, unfulfilled desires, and calls for participation, all united under the clarion call: “I want to be in the room where decisions are made. No decision without us.”
This campaign not only reflects on historical progress but frames the conversation toward future possibilities. The challenge now is to move beyond tokenism and ensure that the voices of individuals with disabilities are at the forefront of discussions affecting their lives.
This vital dialogue encourages reflection and advocacy as society gears up for a future where inclusion is not just a goal but a reality for all.
