Wise words from a city parent

Imagine there was a 'language-sensitivity spectrum' drawn as a line from cool blue to red hot.

Imagine there was a 'language-sensitivity spectrum' drawn as a line from cool blue to red hot. At the blue end sit those of us who think it doesn't really matter how a disability or a condition is described. And at the reactive red end sit those of us who are often very uncomfortable with the words and terms used by professionals, friends, family, or passers-by.

My son has Down's syndrome; he was born with an extra chromosome.

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The medical term for this is Trisomy 21. He is not a 'Down's Boy' or a 'Special Needs Kid'. And he is definitely not a retard.

First and foremost, he is Leo. I think you can already sense which end of the language spectrum you'll find me.

Language shifts like fashion. Whatever terms we decide to own for ourselves and for our young people get hijacked. Before you know it, you're hearing them being bandied disrespectfully around the playground or office in pursuit of a cheap laugh or to cause humiliation.

Even friends will sometimes speak without thinking. For me, once is forgiveable - but repeated ignorance has me heading towards the "exit friendship" door.

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I have also had several conversations with friendly people from older generations where the common terms were different and where 'truisms' around certain conditions were the norm: 'Downs children are such happy souls' or 'Poor boy, wheelchair-bound', and so on.

On these occasions, I've chatted and gently explained that the language is a bit different these days. And that since 'community' is really important, I'd hate their friendliness to be rebuffed because of a language misfit.

I think this is a key point. It's all about the intent behind the words. If the intent is genuine and the words have just 'missed', then you can take a calm breath, step in, and offer your perspective.

It's helpful to repeat the phrase that works best for you. I might say, for example, 'We went to a great picnic with local families who all have a child with Trisomy 21'.

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Hearing a phrase to imitate can be a great relief to people who might worry they are being offensive, but who don't know how to ask for guidance without being more offensive still.

Some parent carers print up simple cards that explain their child's condition and give an internet source for further info and quietly hand that out. Whatever works for you.

I'd like to stress that I'm not trying to start a revolution here. None of us have had enough sleep for that.

And, of course, there are times when I let comments go by because I'm too tired or too wobbly to engage or because the moment isn't right.

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But I see no reason why we can't help tweak the language and terms of reference used toward and around our children.

For example, in the phrase "a young boy who has Down's syndrome", the person comes first, followed by the condition.

By using such "person-centred" language, we can help create a positive sense of identity for our child and their siblings, family, and friends.

This article first appeared in the current edition of Out of Amaze, the newsletter published by Amaze, the Brighton and Hove charity and support group.

Amaze is changing its language, too

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Amaze has been debating the use of the term 'special needs' for a while now. Although it might have been considered the most cherishing, empowering term a decade ago, meanings have a tricky habit of changing and these days you are just as likely to hear 'special' used in an ironic or downright derogatory way in relation to disability.

We want to make sure that the language we use reflects both the prevailing terminology used by government and services and the terms parents are happiest with.

For this reason, Amaze has changed its 'byline' to 'Working with parents of children and young people with special educational needs and disability (SEND)'.

It will also gradually replace the use of 'special needs' with 'additional needs' throughout its literature to reflect a growing desire for recognition that Amaze kids are kids like any other - they just need extra support.