The Elephant in the Room…..

additional needs, down syndrome, down's syndrome, equality, family, inclusion

*ahem* can we just have a quick chat about that elephant in the room….

Welcome to World Down Syndrome Week, which leads us to #WDSD on Saturday. It is a fantastic opportunity for the world to pull together and spread up to date and accurate information about what it means, and doesn’t mean, to have Down’s syndrome in the 21st century. A truly global event.

The day itself is cleverly marked, the 21st day of the third month, as a representation of 3 copies of the 21st chromosome. This translates perfectly for those in America and countries whose dating systems are ordered month/date as 3.21, rather than over here where we like to use date/month which LITERALLY translates to 21 copies of the 3rd chromosome – imagine that! But hey I am being deliberately pedantic and provocative.

But one thing that really cannot be ignored and gets people’s backs up in translation is the letter “s”. It is a tiny little thing but, trust me, it rattles cages. As weeny and insignificant as it may seem, it can cause quite a stir. Last year it was single handedly the most common message I received. Some quite irate too, pointing out that I was using incorrect terminology and even that the name of this page was wrong. So I thought I would clear things up right from the off and if it crops up again, as I am sure it will, (in fact already has this week), I can point people back down here.

In America and most of the world, the little possessive “s” is absent from Down’s syndrome and 3 copies of the 21st chromosomes is referred to as “Down Syndrome”. It is, after all, named AFTER Dr John Langdon Down. World Down Syndrome day was originally launched in America, and is a global event, so it is only right that this is reflected in the day’s title.

However, in the UK we use a possessive “s”. Some people are offended by this little letter and see the addition of this little squiggle suggests the person with the condition is the owner of it. I have lost count of the number of messages I have received politely, and not so politely, telling me to change the name of this page.

So if you are not from these shores, please don’t be offended. The little “s”, for us here in the UK, is a proud nod to Dr John Langdon Down, the incredibly pioneering doctor who first noticed some of the common characteristics that appeared in people with an extra 21st chromosome. He was ousted from by the medical community for his beliefs and interests and for investing in people with learning disabilities. He turned his back on his peers and set up a hospital with the belief that people with learning disabilities deserved a “life” and to reach their potential just like everyone else. Still a far cry from the inclusion we are lucky enough to enjoy today, but amazing nonetheless. The era in which he was living was obsessed with perfection and status and I will never stop being in awe of this man for providing what he did. He built a beautiful purpose built private hospital and a stunning theatre, arguably the best of it’s era, and used to put on theatre performances, sports, entertainment and afternoon tea for his inpatients at a time when the rest of society had written them off completely. He was also an advocate of women in higher education, a liberal man, way ahead of his time.

To quote Wikipedia and give you a measure of the era: “People were astonished that he should wish to pursue a career working in the neglected and despised field of idiocy”.

That (potentially irritating) little “s” is there flying the flag for this pioneer and we are quite fond of it. It is there because we feel that the condition BELONGS to this man, rather than simply being named after him, which could possibly suggest he had Down’s syndrome, which he didnt. For his work and his commitment. His passion and belief. His kindness and care. And we are proud too that he was a Brit.

At the end of the day it doesn’t matter one bit whether the “s” is there or not. Sadly, we have much bigger things to worry about and action. I yearn for the day that the only thing left, as a global community, to discuss is this letter. And i would happily hand it over too if it sorted out everything else on the agenda. I just wanted to explain it now before I receive the mail…. Personally though, I like it. I think the “s” turns the word “Down”, which lets face it is a negative word, into a more chirpy word.

Such a shame he wasn’t called Dr Langdon Fullofbeans.

3 thoughts on “The Elephant in the Room…..”

  1. dderbydave says:

    oh, I didn’t know about the Americanism. I’ve always used the word “Down’s” for the reason you state. Most of the UK references use the possessive too. Down does sound a bit like a negative descriptor now you mention it. Which is ironic because the folk I’ve met with DS are anything but “down”.


  2. anne wynne says:

    Came to your blog via the Guardian article and have just watched Seb on “Loose Women”. He stole the hearts of everyone and I couldn’t help but grin at his impish cheeky nature. My little boy James is 5 and has down syndrome and his character is not that dis-similar to Seb’s. Like you I often feel overwhelmed with pride and love and could never imagine life without my lovely little boy..


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