20 March 2024
Each year on 21 March, the United Nations observes World Down Syndrome Day. On that date in 1996, I knew very little about Down syndrome, but that was to change just two weeks later when my daughter was born. Immediately, I became part of a whole new community, and I had much to learn. I was aware of the chromosome variation, discovered in 1959, and of the lingering myths from the institutional era, during which individuals were placed in long-stay residential settings, often for life, but I knew little of what life was going to be like for my daughter. It took me a while to realize that no one else did, either. Of course, I had hopes and dreams, as I did for my sons, but hopes and dreams for all children change as they grow. How true that is for people with Down syndrome. No one could know what life was going to be like for my daughter.
The institutional era, which, in many countries, ended in the late twentieth century, did not serve people with Down syndrome well, and we are still dealing with the repercussions. Indeed, institutions still exist in some countries. During that era, life expectancy for people with Down syndrome extended only into the teenage years due to a lack of quality care as well as limitations to medical treatments available at the time. People in the Down syndrome community can now expect to live into their 60s, with 1 in 10 living into their 70s. If a person is expected to die in childhood, there is not a lot of motivation to focus on education in preparation for a rich adulthood. That view changed with the closing of institutions, which resulted in more families caring for their children at home. In 1978, a remarkable population study of all babies born with Down syndrome in the greater Brisbane, Australia, area was commenced at the University of Queensland. Those individuals, now in their late 40s, are still part of this longitudinal study. Over the years, researchers in the Down Syndrome Research Program (DSRP) have shared in the joys and challenges experienced by these people and their families. Along with fellow researchers all over the world, DSRP has dispelled the myths of the institutional era. Unfortunately, stereotypes continue to plague the community of people with Down syndrome, limiting expectations and opportunities for them.
People with Down syndrome are not all alike
Before the availability of chromosomal analysis, Down syndrome was diagnosed by counting characteristics; when an infant had a certain number of those features, a diagnosis was made. This technique is still used in some countries where access to genetic testing is not available. Certainly, people with Down syndrome do have certain characteristics in common, but these characteristics are all present in the general population, and no one individual has all of them. Human variation being what it is, and there being many more chromosomes than just Hsa21 that is triplicated, individuals with Down syndrome are much more like their siblings than they are like other people with Down syndrome. The stereotype of individuals with Down syndrome as all being the same has meant that many of them face multiple forms of discrimination and exclusion.
It is critical that individual variation be recognized. While it is understood that some degree of intellectual disability will be present for all individuals with Down syndrome, the extent to which that affects an individual’s quality of life will depend on many factors. For a start, we aren’t just a product of our genes. The environment we grow up in, the education we experience and the support available to us help us learn and grow, and influence our intellectual development. It was once thought that the intellectual development of individuals with Down syndrome plateaued prior to adulthood. DSRP research was some of the first to indicate that this was a myth. How dreadful it was for those denied further education based on low expectations; how exciting for those adults today who can access continuing education beyond their school years.
People with Down syndrome want to live autonomous lives full of meaning and purpose
The institutional era led to a view that people with Down syndrome needed to be cared for. A more pervasive myth is that people with Down syndrome should aspire to an “independent” life. Humans are social beings who thrive when living in interdependent relationships. People with Down syndrome want to have control over their lives: what they eat, what they wear, where they live, with whom they share their lives (including intimate partners) and where they work. They also find fulfilment in being able to help others. This is autonomy, not independence. Imposing a goal of independence, though often sought by people with good intentions, can lead to individuals living lonely lives, or feeling that they have somehow not achieved a mythical status of “adulthood” that is not expected of others in the community at large.
In a recent study completed by DSRP, young adults with Down syndrome told us that they liked being their own person, had high aspirations and a zest for life; they disliked being treated differently from others in the general community and were aware of their limitations. Young adults are indeed living lives of meaning and purpose, though in very different ways, with varying forms of support to enable them to flourish. The global community will have the opportunity to learn from people with Down syndrome at two important events this year: World Down Syndrome Day, being celebrated at United Nations Headquarters in New York (21–22 March 2024); and in Brisbane at the World Down Syndrome Congress (9–12 July 2024).
The stereotypes that persist in the society can lead to low expectations that limit opportunities for quality education; appropriate health care; paid, meaningful employment; and inclusion in all aspects of community life. The United Nations has driven the undeniable advancement of the human rights of individuals with Down syndrome, particularly through the United Nations Convention on the Rights of Persons with Disabilities (CRPD).
The international community, led by the United Nations, can continue to improve the lives of people with Down syndrome by addressing stereotypes and misconceptions. Here are five recommendations for the global community:
- Work with people with Down syndrome and their representative organizations to raise awareness about Down syndrome, in line with Article 8 of CRPD. In particular, there is a need in many countries to raise understanding of the cause of Down syndrome so that families are not faced with discrimination and shame arising from a false belief that they or their ancestors in some way caused the genetic variation.
- Adopt best practices in life contexts through the implementation of evidence-informed guidelines, such as Down Syndrome International’s International Guidelines for the Education of Learners with Down Syndrome.
- Provide opportunities for people with Down syndrome to take part in projects, advocacy campaigns and events. Down Syndrome International, in collaboration with Inclusion International, has developed guidelines to assist organizations with inclusive participation.
- Provide employment opportunities for people with Down syndrome. Employers, from small organizations to large corporations to civil society groups, need to make workplaces accessible and welcoming.
- Use easy-to-understand communication options for all information, ensuring accessibility for people with Down syndrome and intellectual disabilities, as well as for people with limited literacy or those who are reading in a different language, in line with General Assembly resolution 77/240, adopted on 16 December 2022.
All people deserve the opportunity to live life to the fullest. For people with Down syndrome to do so, it is past time to dispense with the myths and stereotypes that for too long have led to low expectations and diminished quality of life.
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