A global community recognizes World Down Syndrome Day each year on March 21st. It is an international awareness day that serves as an opportunity to advocate for the rights of people with Down syndrome and spread awareness of the genetic condition. Each year has a theme, with 2023’s theme being ‘With Us Not For Us,’ to signify a human rights based approach to disability.
The date chosen is significant; it represents the triplication (3) of the 21st chromosome, which results in Down syndrome. World Down Syndrome Day focuses on uplifting the voices of people with Down syndrome and educating the world on what it’s like to have, live, and grow with it.
What is Down syndrome?
Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. It is a genetic disorder. Because of this extra copy of genetic material, a person with Down syndrome may have physical, developmental, or intellectual effects, such as shorter height, smaller hands and feet, developmental delays, and cognitive impairment.
There is no known social, environmental, or behavioral cause of Down syndrome, and it is diagnosed before or at birth. It is usually not inherited, although some cases may have some inherited factors. Some risk factors include higher maternal age and having had one child with Down syndrome.
Why advocacy?
People with Down syndrome are often poorly treated and face discrimination. They are often denied education, jobs, and good healthcare. Decisions about their own lives are taken from them, as they are regarded as unable to take care of themselves even when they demonstrate the opposite. There is a social stigma and huge misconceptions surrounding Down syndrome and people who have it, and it necessitates advocacy and awareness to combat it.
Though public perception has improved over the years – language surrounding people with Down syndrome has certainly come a long way – there is still much room for improvement. Goodwill, a nationally-known charity worth billions of dollars, pays their disabled workers less than 4 dollars an hour. Employees with Down syndrome make up a large portion of Goodwill’s workforce and make a pittance compared to Goodwill’s earnings.
Many adults with Down syndrome are placed in guardianships. A guardianship gives a person the right to make decisions for another person, who has been deemed ‘incapacitated’. While some guardianships can be helpful and may be necessary, such as in cases of severe dementia, they are often abused.
In many cases, adults with Down syndrome are perfectly capable of caring for themselves and making their own decisions, and it’s unnecessary for them to be in a guardianship.
Advocacy seeks to bring awareness to these issues and change them. By doing so, people with Down syndrome will be more accepted and have better lives.
‘With Us Not For Us’
The theme of 2023’s World Down Syndrome Day, ‘With Us Not For Us’, is aimed at combating the traditional, charity-based model when it comes to disability. Instead, the new message is a human rights based approach, viewing people with disabilities as “having the right to be treated fairly and have the same opportunities as everyone else, working with others to improve their lives.”
In the past, people with disabilities were viewed and treated with pity, as objects deserving of charity, not as people with thoughts, feelings, goals, and hopes. ‘With Us Not For Us’ is a people-first approach that calls for everyone to be free to make their own choices. It is common for people with Down syndrome to have others do things for them rather than with them, which leads them to be viewed as incapable of helping themselves. Many disability organizations do the same thing.
‘With Us Not For Us’ has a simple message: stop that! Instead of speaking over people with Down syndrome, allow them to speak for themselves. Instead of making decisions for people with Down syndrome, will enable them to make their own. It is important to be inclusive in your advocacy and in your accessibility.
People with Down syndrome require the same equal access to your website, apps, and other digital media as everyone else. Though they may require accessibility tools, like screen readers, you must ensure that your content is accessible to all. Your role in ‘With Us Not For Us’ is to be digitally accessible, and that means ensuring your content can be accessed by all.
Conclusion
World Down Syndrome Day is March 21st. It serves as a day to promote awareness and advocacy for people with Down syndrome, who face stigma, discrimination, and social misconceptions every day. Though society is slowly changing for the better, there is still a long way to go, and World Down Syndrome Day is working to continue changing it.
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