World Down Syndrome Day: Not just for one day

Morgan Lewis, World Down Syndrome Day

Many days seem to be the international day of ‘something’. Indeed, whilst researching for this blog I learnt (as someone who is left handed) that Monday 13th August will be international left handers day this year. Generally designed to raise awareness of particular issues and concerns many of these days seem to be fairly randomly distributed during the year.

The 21st March, however, is World Down Syndrome Day and rather than being a random date, this day is specifically chosen to celebrate the lives of people with Down Syndrome: chromosome 21 is the chromosome linked with Down Syndrome. For some people the idea of ‘celebrating’ Down Syndrome may, however, unfortunately seem somewhat strange.

In the everyday use of language negative attitudes towards people with Down Syndrome are often still evident. For example, in the context of prenatal testing, reference is often made to assessing the ‘risk’ of Down Syndrome as if it is something dangerous that needs to be eliminated. Similarly, people may refer to people ‘suffering’ with Down Syndrome whereas individuals to whom this label is applied may prefer to say that they ‘have’ Down Syndrome: it is part of who they are (just as being left handed is part of me) and they do not ‘suffer’ from this. You may feel that this is being pedantic and that it is ‘only words’. However, the use of language both reflects and shapes our attitudes.

Furthermore, its impact can be long lasting. Only this week I saw a plea from a parent of a child with Down Syndrome for professionals to be careful in their use of language when informing parents that their child has Down Syndrome as they only have ‘one chance’ to get it right. Conveying such news in a negative manner can have far reaching consequences for both the child and their family.

Over recent years there have been a number of great examples of awareness raising in relation to Down Syndrome. For example, the BBC documentary ‘A world without Down’s Syndrome?’ fronted by Sally Phillips, explored the ethical implications of new approaches to prenatal screening for Down Syndrome.

People with Down Syndrome and their families took part in a social media campaign using the hashtag #justaboutcoping alongside photographs of them enjoying a range of activities. Just this week a group of 50 mums of children with Down Syndrome have launched a ‘car pool karaoke’ video. Currently being widely shared on social media it is accompanied by the hashtag #wouldntchangeathing (if you haven’t seen it yet then please take a few minutes to watch ). 

What all of these examples have in common is that they seek to challenge negative views surrounding Down Syndrome. Continuing in this vein the 2018 World Down Syndrome Day has the theme of ‘What I bring to my community’: rather than viewing people with Down Syndrome as a ‘burden’ on society the aim is to stress the many contributions they can and do make to their communities when provided with opportunities to do so.

Last December (on the International Day of Disabled Persons) I came across a post that reminded us that disabled people play an important role in society 365 days a year and that celebration and awareness should not be confined to a single day. This is an important point – a day focused on awareness raising is important but what happens (or doesn’t happen) the rest of the year is as important.  

So, on March 21st please take time both to reflect on your understanding of Down Syndrome and to learn more about the lives of people with Down Syndrome recognising the many contributions they can and do make to their communities.

However, please don’t leave it there: on March 22nd and beyond please continue to learn, continue to challenge negative attitudes and language, and continue to stand alongside people with Down Syndrome and their families to ensure that they are recognised as equal citizens and valued members of their communities. Awareness and celebration should be about more than just one day.

About the author: Professor Ruth Northway MBE is Professor of Learning Disability Nursing at USW.

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Thanks to Amanda Lewis for allowing us to use a picture of her son, Morgan.