The Politics of Down Syndrome by Kieron Smith

The politics of Down SyndromeA thought-provoking book and well worth a read. Link to it here.

Here follows a review of the book, and a short record of an interview with the author.

REVIEW of “The Politics of Down Syndrome” by Ed Lewis, Kieron Smith.

This book is a call for people to think again about what it means to be inclusive, why we’re hung up on the idea of intelligence and how an inclusive society is a better society.

Kieron Smith is the author of The Politics of Down Syndrome and the father Continue reading

Nuchal Fold Translucency Scan

12 week scan – Where our journey all began!

The reason I wanted to write this article is that during my early pregnancy, I was very frustrated at the lack of information that was given to me or that I could find on the internet regarding the outcomes of high nuchal fold readings.  So I hope this is useful to someone out there….Feel free to write with your own story (register below).

I am also disturbed by the reportedly high number of babies aborted when diagnosed with DS.  I wonder if some of these decisions are made partly as a result of Continue reading

What’s in a Name?

Why is it so important how we refer to people with DS? I have had this discussion with my other half a number of times, in trying to understand my own thoughts and feelings on this subject.

On the one hand, putting my impartial biologist’s hat on, I can understand why one might refer to someone as ‘a Downs’ or ‘is Downs’ in the same way as you might say ‘is diabetic’ or ‘an epileptic’. This is using the term purely as a medical description to identify that the person has a trisomy on the 21st chromosome.

And yet, why do I internally flinch when I hear someone say it? (Interestingly, sometimes it is other parents of a child with DS.) My dislike of the term ‘a Downs’ is probably because I feel it has been used in a negative and derogatory way in the past. It makes me feel uncomfortable – just as if I heard someone say ‘a black’ or ‘a Paki’. They are not being used as descriptive terms but unpleasant labels, which identify the person as ‘different’. I don’t think anyone would be offended by, for example ‘he/she is from Pakistan’ or in the same vein, ‘he/she has Down Syndrome’. That is a simple statement of fact, an ‘Oh, by-the-way’ bit of information. Importantly though, it does not define the person, nor does it suggest that they may somehow be inferior or not belong.

So, just for the record, I think it is important to say ‘someone with Down Syndrome’.

Your thoughts are welcomed…….