I am not meaning the intentional use offensive and inappropriate words or phrases that are meant to hurt and abuse. Here I will be exploring the use of everyday language and how it relates to my son’s disability.
I have come to really dislike the word ‘special’, especially if it is used to describe Ben! Like every other child, he has unique and remarkable qualities, some of which relate to his disability but many that don’t! The ‘special’ label is sometimes used without much thought, even if it is well intentioned. I have found that the use of the word special can feed into the ‘let’s feel sorry for them’ view of disability. Whilst I am delighted that there is a programme on CBeebies, promoting the use of Makaton signing, I am so disappointed that it is called ‘Something Special’.
Schools have Special Needs Co-ordinators. Special Educational Needs and Disability (SEND) is a phrase that appears in policy relating to children with disabilities. That word ‘special’ is everywhere. There is a wonderful film, made in 2017 to mark World Down Syndrome Day which powerfully illustrates that it is more helpful to think in terms of human needs rather than special needs.
What’s in a Name?
Down Syndrome, like some other disabilities has changed its name over time, partly to reflect a less negative view of the condition. I find it bewildering that it was ever considered acceptable to refer to Down Syndrome as ‘Mongolian Idiocy’! This was in Victorian times, but even so! I read a travel book recently which was fascinating, funny and insightful, but was completely ruined for me by the author describing a night out when he referred to his inept dancing as ‘spastic’. Negative connotations associated with disabilities are embedded in our language. Consider phrases like ‘blind drunk’ or ‘falling on deaf ears.’
Does he take sugar?
Ben’s speech is very delayed and if you didn’t know him well, you could mistake him for being non-verbal. In fact, he has an extensive vocabulary and providing people speak clearly, he generally understands what is being said to him. He does find it difficult to respond, especially if he isn’t given time to process what is being said. It does take a bit of thought and effort to communicate effectively with Ben, but I do find it frustrating when people bypass him altogether and communicate with me instead about what he wants. I want to scream
‘Don’t ask me! Ask him!’
Sticks and Stones
One of the things I find hardest about being a parent of a child with a disability is to constantly have to deal with other people’s reactions to him. A lady once walked up to us, pointed at Ben and said ‘Oh look! He’s a mongol!’. Usually, reactions are a bit subtler than that. Often people stare, then pretend not to! When Ben turned four, I got quite upset by the number of people who asked me if he was going to the village school. I found it difficult because I felt what they were really asking was ‘Is he going to special school?’. I am always happy to answer questions relating to Ben, but some questions are very loaded. Like many parents of a child with Down Syndrome, I dislike the ‘Did you know before he was born?’ question, with the implied ‘Would you have terminated had you known?’.
I am writing this a couple of weeks after the hugely successful World Down Syndrome Day 2018. This year, it seems to have had so much more publicity and without a doubt. The lovely carpool karaoke video has really captured imaginations.
It is my hope that people will now think twice about telling me that they are ‘sorry’ Ben has Down Syndrome or say that he ‘suffers’, and that they will not call him a mongol, or a Downs or a Down’s Syndrome child.
He is a person. He is Ben.
World Down Syndrome Day carpool karaoke
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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 Syndrome.