The assembly sets out some of the facts about Down’s syndrome. It includes the story of Dr Down, and mentions some famous people with Down’s. The theme throughout is that of attitudes to people with learning difficulties

Introduction for teachers
World Down’s Syndrome Day is 21 March. Down’s Syndrome Awareness Week in UK is 15th to 21st March.

Many mainstream schools have children with Down’s. Please read the assembly carefully first with that in mind.

Resources
You may like to show some images of people with Down’s syndrome

Introduction
[Show the images if you like]

The 21st of March is World Down’s Syndrome Day. The week before it is Down’s Syndrome Awareness Week.

People with Down’s syndrome are perfectly ordinary people in every way but one, and that is that deep inside the cells of their bodies, in the microscopic threads of life that we call DNA, there’s one bit that’s slightly different, and that has an effect on them. So although all people with Down’s syndrome are different from each other, just as we all are, and all look like their parents and brothers and sisters as we all do, there are also some slight things about their appearance that are often recognisable. The other result of the difference in their DNA is that people with Down’s syndrome usually have some learning difficulties.

Most of the time we don’t even think too much about Down’s syndrome. We’ve come to learn that people with Down’s syndrome are just like us, except for some special learning needs. But 21st March is World Down’s Syndrome Day, so you might think:

‘Why do we need a special day for people who are mostly just like the rest of us?’

The answer is that there’s still a lot of misunderstanding about Down’s syndrome. There are still people who think that people with Down’s should be pitied, or treated as if they were somehow ill or not capable of coping with life. And for many years that opinion was so strong that they weren’t allowed to go to school, or college, or have jobs other people had. Some of that ignorance and prejudice still exists in some people. There are still bullies around who make fun of people with Down’s, or don’t want to make friends with them. So Down’s Syndrome Awareness Week is an opportunity to put things right and make sure that people with Down’s are treated just the same as as everyone else.

Story
Why is it called ‘Down’s syndrome’ do you think? For the answer we have to go back in history nearly 150 years to meet a man called John Langdon Down. Now, does his name give you a clue?

Yes, John Down was a doctor; the first to recognise what we now call Down’s syndrome. He didn’t call it that, though. The condition was named after him much later.

Dr Down was a brilliant doctor. He won gold medals and certificates during his training and qualified in 1856. Everyone thought that he would have a career treating important and rich people in a big hospital, but instead he became the doctor at a place called Earlswood, in Surrey, where people with mental problems were looked after. At that time a place like that was called an asylum, not a hospital, because it was just a place of safety, where people were put away and more or less forgotten about. But Dr Down wanted to try to give them something better than that, and he worked hard to make sure the people under his care were well treated as possible.

Dr Down noticed that some of the people there had particular physical features that were the same as each other. He wrote a paper describing them as looking a bit like people from Mongolia in the Far East, and that ‘Mongolian’ label stuck for almost a hundred years until it was decided that it was much better and more accurate to honour both the people themselves and the doctor by calling their condition Down’s syndrome. So you see Down’s is a proud name, that commemorates a famous doctor who did his best for people with special needs at a time when so many thought it wasn’t worth bothering.

Once, people with Down’s were kept out of school, because it was mistakenly thought they couldn’t really learn anything. We now know that that’s just not true, but it’s upsetting to think of the many thousands of people with Down’s – and other kinds of learning difficulties – who for many years were not given a chance to live better lives and become independent. Today, though, many people with Down’s are proud role–models; not just for others with the same syndrome, but for the rest of us too. For example there’s Stephane Ginnsz, the first person with Down’s syndrome to play the lead in a film, which is a true story about a boy with Down’s who plays the piano to accompany a young girl violinist. It’s a lovely story. On his website, Stephane says,

‘My name is Stephane. I am an actor. I also have Down syndrome.’ (It’s called Down syndrome in the USA)

Do you see the point? Stephane is first an actor. Having Down’s comes second to that.

Another actor with Down’s is Paula Sage, who was in a Scottish film called ‘AfterLife’, and won a Scottish BAFTA award for her performance.

Of course, not all people with Down’s are famous, but they are all loved by their families and friends. Here’s a young woman called Jenny talking about her sister Rebecca, who’s 22 and has Down’s. Jenny fell down one day in an epileptic fit and knocked herself unconscious. When she woke up Rebecca has lifted her into bed and put her in the recovery position, then she’d got the neighbours to call an ambulance.

‘I owe her my life,’ says Jenny. ‘I can’t thank her enough.’

Jenny tells us that Rebecca has just finished a life skills course at college and is working at Morrison’s supermarket. As a result she’s really come out of her shell.

‘She is now more confident and outspoken and it’s great to see her blossom.’

Once, and it’s not so long ago, Rebecca couldn’t have gone to college, and no-one would have thought she could ever have a job. She’d have been stuck at home, loved by her family, but with no chance to become independent and earn a bit of money. It’s taken a long time to improve things for people like Rebecca, but I like to imagine Dr John Langdon Down is looking down at her from wherever he is now and nodding and smiling to himself, and saying, ‘What did I tell you?’

Conclusion
We do like to put labels on people, don’t we? We like to say that one person is a good footballer, another is a piano player, another is good at maths. And, yes, sometimes we say that a person has learning difficulties, or has Down’s syndrome, or has Asperger syndrome. All of that’s fine just so long as we never forget that everyone is a person first and foremost, loved by God and by their family, with all the wonderful qualities of a human being. Nobody should be restricted by their label. A good footballer isn’t just that and nothing else. A person with Down’s isn’t just that and nothing else. Dr John Down knew that, but in his day it was difficult to make his vision come true. Now, perhaps, we’re getting there.

A prayer
Lord, we thank you for all the richness of our humanity, for our skills and talents, for our gifts of personality and kindness and for the joy that we can bring to each other and to our families. We thank you for the pioneering work of John Langdon Down, and for all who work to make better lives for people who sometimes come across barriers to make the progress in the world that we know they are capable of.

A thought
Always look beyond the label that the person’s carrying.

Things to think about
What’s your label? Are you the one who always tells a joke? Or the one who can be relied on to get a job done? Or the one who can sometimes be in trouble? Do you ever wish people wouldn’t just think of you like that? Can you write or draw your feeling about that, using the title ‘Look beyond the label’?

Links The Down’s Syndrome Association site has details of the awareness week, general information, and stories of people with Down’s, including Rebecca’s story in more detail.

www.downs-syndrome.org.uk

Stephane Ginnsz’s site is at www.stephane.ginnsz.com It has a link to the trailer of Duo, but in very small format. For full screen you can see it here on YouTube.

Paula Sage features in a Woman’s Hour programme from 2004. The programme has an interview with Paula. She’s asked how she manages to cry on demand in the film and says she thinks of the death of Maurice Gibb of the BeeGees.

There are two excerpts from ‘AfterLife’ on Youtube, but – warning – there’s an ‘f’ word in one, and very high emotion verging on violence in the other. Use your judgment.

This e-bulletin issue was first published in March 2010

About the author: Gerald Haigh

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