World Down Syndrome Day: Let´s promote their well-being and autonomy

March 21 marks World Down Syndrome Day. The United Nations designated this date with the objective of remembering the inherent dignity and valuable contributions of people with intellectual disabilities as promoters of the well-being and diversity of their communities. It also seeks to highlight the importance of their autonomy and independence, particularly the freedom to make their own decisions.

 

Understanding Down Syndrome

 

Down syndrome is a genetic alteration caused by the existence of extra genetic material in chromosome 21 that results in intellectual disability.

 

The estimated incidence of Down syndrome worldwide is between 1 in 1,000 and 1 in 1,100 newborns.

 

People with Down syndrome tend to have more health problems in general. However, social and medical advances have succeeded in improving the quality of life of people with the syndrome. At the beginning of the 20th century, their life expectancy was less than 10 years. Today, about 80% of adults with the syndrome live beyond the age of 50.

 

Early medical and parental work supports the quality of life and health of those with this genetic disorder by meeting their health needs, which include regular checkups to monitor their physical and mental development, as well as timely intervention, whether with physical therapy, inclusive special education or other community-based support systems.

 

“With us, not for us”

 

Around the world, people with Down syndrome are not always treated with dignity or given equal opportunities. In many cases, they are denied quality education, good health care and the ability to work and earn their own money. Nor are they allowed to make decisions about their own lives.

 

The slogan “With us, not for us” is key to a human rights-based approach to disability.

 

For this reason, the United Nations recommends moving away from the outdated charity model of disability, which treats people with disabilities as objects of charity, deserving of pity and dependent on the help of others.

 

A human rights-based approach considers that people with disabilities have the right to be treated fairly and to have the same opportunities as everyone else, working with others to improve their lives.

 

Three movies that feature Down Syndrome protagonists

 

Cinema always offers us the opportunity to learn about realities different from our own and to develop our empathy towards other people. For this reason, it is worth remembering three films that have featured people with Down syndrome and remind us of the importance of contributing to their well-being and autonomy.

 

1. “The Grown-Ups” (2016). Director: Maite Alberdi. This Chilean documentary shows a group of friends with Down syndrome who have been attending the same school for 40 years. They have passed all the courses and have been there longer than all the teachers. Now they must fight to get a better job, earn money like anyone else, learn to take care of themselves and to ensure that, at 50 years of age, no one looks at them as children anymore. Only then will they be able to fulfill their adult dreams.

2. “Champions” (2018). Director: Javier Fesser. This Spanish comedy tells the story of Marco, a professional basketball coach, who after a personal crisis ends up coaching a team composed of people with intellectual disabilities. Although he initially refuses, he ends up learning a valuable life lesson. It won the Goya for best film. The American remake “Champions”, starring Woody Harrelson, was recently released in the United States. This new version will be released in Latin America in the coming weeks.

3. “An Irish Goodbye” (2022). Directors: Tom Berkeley y Ross White. This funny yet poignant short film is set in rural Ireland, where two brothers meet after the death of their mother to decide what to do with the farm where she lived. Lorcan, who has Down syndrome, wants to stay and live there, but his brother Turlough is determined to sell it. It won the 2023 Oscar for Best Live Action Short Film.

 

By: Juan Carlos Ugarelli

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