I try not to get too bogged down in the terminology that is used to describe a person who has been born with Down syndrome.  You could spend a long time trying to teach people the correct way to refer to someone with a disability – referring to them as a person before mention of their disability – and still never affect the change required.

In the main, people simply haven’t given their method of address much thought and so rather than get caught up in becoming excessively PC about all this, I often let it go. I bet many of you do also.

But when it comes to the media, I am astonished at the glaringly wrong uses that occur everyday.

On a daily basis we get global news feeds from Google on stories relating to Down syndrome and this week I came across a few that were sooo wrong that I thought they’d be worth a mention.

Ready? In separate news articles picked up in the main from the US, the stories described someone who was  ‘saddled with Down syndrome ‘; ‘ a victim of Down syndrome’ and a Down syndrome sufferer.

The first reference is simply bizarre! And describing some with this condition as being a victim or a sufferer smacks of total ignorance and while I can’t presume that everyone understands the cause, I would like to believe those in the media would have researched the background to a story and would therefore be able to report in a more responsible manner.  

This week a few matters came to my attention which I thought might be worth mentioning. Simply because they have opened my eyes to some terrible injustices that exist in both the health and education system that need to be highlighted and reviewed.  And don’t include the lunacy Act of 1871!  

1.       Are you aware that if a child with an intellectual disability is returned an assessment of being ‘mild’ that he/she will no longer be eligible for a service?

2.       And that if a child of school going age has not completed his/her full education by the time they are eighteen – they will not be allowed to complete their education.

3.       And that service providers who become aware of the fact that you are accessing private therapy to supplement the services they offer, can chose to discontinue the service they provide.

If there’s anything else you feel would be worth highlighting to other parents please let us know.  Forewarned is forearmed!

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