World Down Syndrome Day – With Us Not For Us

March 21st is World Down Syndrome Day, a day dedicated to raising awareness and advocating for the rights, inclusion, and well-being of people with Down syndrome and other disabilities. This year’s theme is “With Us Not For Us”, challenging the outdated perception of the charity model of disability, where people were portrayed as deserving of pity and relying on others for support. Instead, we should focus a human rights-based perspective where everyone is treated with dignity and respect, and given equal opportunities to thrive. Read on to find out how you can be part of this change!

What is Down syndrome?

Down syndrome, also known as Trisomy 21, is a condition caused by the presence of an extra chromosome – chromosome 21. It affects around 1 in 1,000 babies born each year and is the most common of chromosomal abnormalities. Although it may affect physical growth and intellect, it is usually distinguished by its recognisable physical characteristics. These can vary between individuals but may include having a small chin, almond-shaped eyes, a flat nasal bridge, a protruding, large tongue in a small mouth cavity, and a single crease on the palm.

People with Down syndrome may also experience low muscle tone, which can make it difficult for them to lift their head up at the expected developmental milestone of around 6 weeks old. They may also experience speech problems due to the size of their tongue. In addition to these problems, they are also susceptible to a range of health issues affecting their hearing and vision, heart, endocrine system, immune system, gastrointestinal system, teeth, and fertility.

The role of the rehabilitation team

It is essential to seek medical guidance for common associated health problems and to ensure that children receive support from health professionals such as speech and language therapists, occupational therapists, and physiotherapists or physical therapists

Physiotherapists and rehabilitation teams play a crucial role in helping children with Down syndrome live a full and active life. Interventions are tailored to the individual’s physical and intellectual needs, strengths and limitations, using a combination of tummy time, sensory integration therapy, neurodevelopment treatment, perceptual-motor therapy and traditional strength and conditioning programmes. These can include activities such as two-wheeled bicycle riding, and therapeutic horseback riding. The role of the team is to educate individuals and their families and provide input on health promotion and long-term condition management, and address issues such as delayed developmental milestones, balance problems, decreased strength, reduced levels of physical activity, issues with sensation, and to promote emotional and mental-health wellbeing.

It is important not to judge individuals with Down syndrome, as signs and symptoms can vary greatly between individuals. With proper support and care, people with Down syndrome can live independent lives, work, and form intimate relationships.

How can you get involved?

As we come together on World Down Syndrome Day, let’s remember that we all have the right to be treated fairly and have the same opportunities in life. Let’s promote inclusion and advocate for the rights and well-being of people with Down syndrome and other disabilities. Together, let’s make the world a better place for everyone.

  • Join the global network of people with Down syndrome and become a supporter of the With Us Not For Us campaign
  • Remind everyone about The United Nations Convention on the Rights of Persons with Disabilities call for:
    • everyone to have the freedom to make their own choices
    • full and effective participation of persons with disabilities – many organisations exclude people with Down syndrome from taking part in their work. They take decisions for them not with them
  • Use the hastags #LotsOfSocks4DSI #WorldDownSyndromeDay #WithUsNotForUs #WDSD2023 #ShareTheJourney or add these tags to your posts @worlddsday and @worlddownsyndromeday
  • Follow World Down Syndrome Org on Facebook @worlddsday, Twitter @worlddsday or Instagram worlddownsyndromeday