Why are we so afraid of Down Syndrome?

A well written article from another mum who seems to have had similar experiences to ourselves across the pond…

Put simply people are afraid of the unknown…..the fact that we test antenatally for Downs at all, surely means its a bad thing to have?….Something that must be screened out at all costs?!  Add to that a negative attitude from medical staff that you may encounter and its no wonder the statistics for abortion of foetuses with Down Syndrome are so high.

If we stopped using eugenics to wipe out this wonderful cross-section of humanity then everyone might have an opportunity to meet/ know/ love/ befriend a person with DS and be the better for it!  The fear factor would no longer apply…..

Read her article here  

Terrible statistics…

When I, aged 32 yrs, and my partner rocked up to our 1st ever 12 week pregnancy scan, wearing leathers (having come on a motorbike) and heard the words “Are you going to tell her, or am I?” we knew we were in for an unexpected ride….

But the biggest surprise and shock to me was not the diagnosis itself but that there was only 1 assumption made by the doctors we met…that we would not want to continue with the pregnancy! I was horrified that they offered me a termination there and then, without any further testing to be certain of the cause of the large nuchal fold reading (which can be many things). (See also: Nuchal Fold Scan on this site)

And even when I went for CVS the next day, the doctor performing the procedure said “We can all live with ourselves better if we find out for certain”….except that I was having the test because I needed to know exactly what we were dealing with to get prepared…..NOT because I needed to justify termination due to an ‘adverse outcome’ (his words). I remember coming away from the hospital feeling really disappointed and sad – I thought hospitals were places to support people with medical issues, not be dealing in damn statistics and eugenics…and that little life inside of me seemed to have so little importance in their eyes….which just made me all the more protective of her!

But what of those women in a similar situation to me….how many go through with a termination because it felt like that was the advice the doctors were giving?  It might sound to them, in their confused/ shocked state, as if that is what everyone else would do……what would be expected….

And why was I rapidly hauled into (made an emergency appointment with) my local doctor once they realised I had declined any testing when I became pregnant with my 2nd child?  He wanted to talk to me about why I didn’t want testing and did I understand the ‘risks’….is it this fear that gives us the terrible statistic of 94% termination rate for babies with DS? And even worse, allows abortions up to and including birth on the diagnosis of DS? (See Abortion on Grounds of Disability: Eugenics at work? on this site).

Abortions on the Grounds of Disability – Eugenics at work?

I follow the excellent blog “Downs Side Up” by mum of 2, Hayley Goleniowska.  She was recently asked to go to the Houses of Parliament for a Parliamentary Enquiry into the current UK law on Abortion on the Grounds of Disability.

Current abortion law limits abortions to 24 weeks except in the case of ‘Ground E’ abortions = babies ‘at high risk’ of ‘severe handicap’ , for whom a termination is possible ‘up to and including during birth.’  The problem is that the term ‘severe handicap’ is not clearly defined and open to interpretation.

Of the 2,307 Ground E abortions performed in 2011, 22% (512) were undertaken due to babies having Down Syndrome.  It has been the collective experience of many families with a child with DS, that medical professionals often use negative language when reporting a diagnosis of Down’s and that there is an expectation that the mother would wish to terminate (see my post ‘Nuchal Fold Tranlucency Scan in ‘On Your Soapbox‘).  This could potentially put subtle pressure on the expectant mother to terminate.

Read Hayley’s report on what she said at the enquiry here


What’s in a Name? – Part 2

A subsection of an article written by John Franklin Stephens, published in The Denver Post, USA (Read more: Using the word “retard” to describe me hurts – The Denver Posthttp://www.denverpost.com/commented/ci_10351963#ixzz2AjEJSjaY

What’s the big deal about using the word “retard”?………Let me try to explain.

I am a 26-year-old man with Down Syndrome. I am very lucky…..and have a good life……I am a Global Messenger for Special Olympics and make speeches to people all over the country…..

The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place. Continue reading

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…….