Leave No One Behind
The date of World Down’s Syndrome Day – March 21st is symbolic as Down’s Syndrome is caused by a third copy of the twenty first chromosome, hence the twenty first day of the third month. The purpose of the day (as endorsed by the United Nations and the World Health Organisation ) is to ‘raise public awareness of Down’s Syndrome’. The day is observed all over the world and each year has a different theme.
This year, the theme is ‘Leave No One Behind’.
In an age when everything from potholes to pies are given ‘awareness days’ it can be easy to lose the bigger picture of how important disability awareness is. This is particularly true for Down’s Syndrome where lack of awareness and understanding has caused great damage to individuals with Down’s Syndrome and the wider Down’s Syndrome community.
A specific example is in relation to reading, prior to the 1970’s when there was little research into learners with intellectual disabilities. There was an assumption that people with Down’s Syndrome were unable to learn to read. There were exceptions to this, but the general expectation was that reading was not an option for people with Down’s Syndrome. This meant that they were not taught to read, with the astonishing result that many people with Down’s Syndrome couldn’t read.
Consider the implications for that in terms of life chances – employment, access to health care and independent living and so on. Lives limited and constrained simply because of a lack of awareness that given the right support, people with Down’s Syndrome are capable of learning to read and by extension, learning to write.
Out of Sight, Out of Mind
I grew up at a time when people with Down’s Syndrome were essentially invisible. I have an eleven year old son with Down’s Syndrome and he was the first person I had ever met with DS. Ben was diagnosed when he was a few days old.
We were given some rather outdated leaflets at the hospital, and I had seen an episode of Inspector Frost where one of the characters had Down’s Syndrome, but we took our baby home from hospital with no real understanding of what Ben’s diagnosis meant for him or for our family as a whole.
Fortunately, with the growth of social media, there is much more information around now. The significance of this is that new parents can access meaningful information from other families about actual lived experience,s rather than an outdated medical model of what living with Down’s Syndrome means.
This is ‘awareness’ in the best sense. Through social media the Down’s Syndrome community is developing a powerful voice and increasingly the old damaging stereotypes are being challenged.
To state the absolute obvious, the best advocates are those with Down’s Syndrome themselves. It has been an exciting year with the dancer Andrew Self bursting on the scene with his appearances on the BBC show ‘ The Greatest Dancer’.
Oliver Hellowel the wildlife photographer has just published his second book and has made various appearances in the media. The actress Sarah Gordy was recently awarded an MBE for her acting and services to charity. She is the first person with Down’s Syndrome to have been recognised in the Honours List.
Leave No One Behind
I have highlighted some prominent members of the Down’s Syndrome Community who have done much to challenge perceptions and awareness. The theme of leaving no one behind does however, acknowledge that there is is still a very long way to go in terms of creating a society where even those who face the greatest challenges, can thrive and flourish and live life to the full.
Less than 10% of adults with Down’s Syndrome in the U.K. are in paid employment. This is scandalous.
I often see stories on social media celebrating a success story where someone with Down’s Syndrome has become a hairdresser or scaffolder or works in a cafe. I love seeing these individual stories, but equally I wish they weren’t news.
It shouldn’t be so extraordinary that someone with Down’s Syndrome finds a job, because given the right support this is achievable and realistic for many adults with Down’s Syndrome.
I also believe it is significant that this year, the Down’s Syndrome Association has chosen to use this year’s theme as an opportunity to highlight the issues for people with Down’s Syndrome, who have very complex needs.
It’s only relatively recently that it’s been recognised that it’s possible to have a dual diagnosis of Down’s Syndrome alongside Autism. Some people with Down’s Syndrome also have complex medical needs which can involve around the clock care needs. Those with the most complex needs also need the greatest awareness so it is to be hoped that the Down’s Syndrome Association and other organisations will continue to highlight this area.
Whilst World Down’s Syndrome Day is about raising awareness, it is also a huge celebration of a very proud, diverse and resilient community. This is captured beautifully in a film made for this year’s World Down’s Syndrome Day. Enjoy and happy World Down’s Syndrome Day!
I have spent all my working life in education, mostly teaching music but also working with pupils who have special educational needs and disabilities. I am passionate about inclusion and promoting understanding of Down’s Syndrome.
My son Ben has Down’s Syndrome.
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