The Storm After The Calm.

The Odd Sock Diary has been quiet for a while because we’ve been on holiday. On the first day, a few moments after these photos were taken, as Freddie and I were jumping over the frothy edges of waves breaking on the beach, my phone fell out of my pocket into the sea.


 

It took a few days for the wretched thing to dry out properly and recover most of it’s functions (except for the camera and torch), but this turned out to be a good thing, because it meant I had no choice but to have a break from social media – which meant I was not distracted from being ‘in the moment’, enjoying time with my family. Crucially, it meant that I avoided having my holiday mood spoiled by the slew of reports about, and responses to, both the Australian ’60 Minutes’ documentary about prenatal testing and the CBS report on the ‘eradication’ of Down’s Syndrome in Iceland. When I returned home, and my phone to (almost) full function, my newsfeeds were full of them. Worst of all, of course, were the hateful Facebook comments — the sort of thing no one would dare say to your actual face for fear of getting their own face rearranged.

A certain level of ignorance is to be expected amongst people who have never had any reason to learn about Down’s Syndrome. Such ignorance is forgivable – I, myself, am ignorant about many things which fall outside my life experience. But the nasty way in which some of these comments were expressed was staggering. I get it — not everybody wants, or would be able, to raise a disabled child. But the sheer spite and contempt directed at people with Down’s Syndrome and their families was totally un-called-for, and, frankly, disturbing. At times I felt like I’d wandered by mistake into some digitised archive of the Third Reich.  What can have happened to these commenters to leave them so eaten up with bitterness and fear? Or are they simply professional trolls, who get a perverse kick out of causing hurt and offence to others?

I was struggling to even begin to formulate a response to the things I’d read. Then I saw something that let me off the hook: a motivational meme that someone had left lying around on their timeline. It said: ‘The world is changed by your example, not your opinion’. So maybe the best way forward is not to respond directly to these things, but to carry on simply showing the world what a good life, what a happy, worthwhile and quite ordinary life, people with Down’s Syndrome, and their families, can have.

That said, I am a woman of strong opinion and strident voice, and I feel better when I have my say, and I realised that many of the ‘points’ raised by negative commenters are things that I have addressed in some way in previous posts. So I am going to re-share some of them over the coming days, and I would like to ask my fellow advocates and colleagues in the ‘Down’s Syndrome’ blogging community to share my posts too (if you see them and feel they make a valid point), and I will do likewise with yours on my Facebook page and on Twitter.

How do we, as individuals, and families, live our lives? How are we the same as ‘typical’ individuals/families, and how are we different? How do we meet the challenges we face, and overcome them? I’ve no idea how to do one of those Linky things, but if you’ve got something you’d like me to share, please drop me a link to it, via the comments, or messenger, and I’ll share it around.

Advertisements

A Vial Image

Images grab attention. They allow readers to summarily apprehend and review complex descriptions and concepts

On 30th July BBC news ran an article headlined ‘Public Health Wales ‘scoping’ Down’s syndrome Blood Test.’ From the point of view of the Down’s Syndrome Community the article struck a positive note. The article reported that Public Health Wales had cautioned that any plans to introduce the new test for Down’s syndrome within NHS maternity units in Wales must be carefully considered. It also quoted Julian Hallett from the Down’s Syndrome Association in Wales as saying ‘there should be no rush to implement NIPT in Wales until NHS staff were ready to support women and explain the new choices for screening’. Also reported were his comments that midwives and screening coordinators need to be trained (in the system) and have up-to-date, balanced and accurate information on the conditions being tested for: the need for health professionals to ensure that they balance the information they give parents by including positive information, and explaining the increased opportunities that now exist for both children and adults with Down’s Syndrome: and the need for rapid access to appropriate counselling, so that parents can make an informed decision.

 

This is exactly what so many in the Down’s syndrome community have been calling for: careful consideration instead of blanket acceptance and assumption; balanced and up-to-date information that will allow prospective parents to make a truly informed decision. At last, perhaps, our voices are being listened to.

 

But the BBC chose to run the article accompanied by the following image:


 

Five vials of blood, side by side. Appropriate enough, you might think, for an article about a blood test. So what’s the problem? Look closely at the picture, at the tubes. What do you notice about them?

 

I appreciate that whoever was responsible for choosing the image did so without malice, or even much thought. In all likelihood they just grabbed a stock image. Why does it matter?

 

Images grab attention. Images allow readers to summarily apprehend and review complex descriptions and concepts. This is especially true in the image-heavy, quick-click world of social media, where we do not expect to have to pore over the details of a lengthy text; instead we want to consume information in the form of easily digested pictures and bite-sized captions.

 

Visual images make a point more quickly and forcefully than words. But it is easy to be misled by them, because they show only a snapshot of the reality that the artist or image-maker has chosen to portray. This is a particular problem for those grabbing stock images generated by someone else: the creator’s original message or intention can be overlooked, and a superficially appropriate-seeming image can end up giving out a quite different impression to that contained within the text.

 

Those viewers who do take the trouble to read all of the accompanying text will not remember all the words and are, therefore, vulnerable to have their understanding of the text biased by one, simple, stark, arresting image that their mind will retain for much longer.

 

Now, look again at the image above. Read it. Consider every detail and the impression it creates in your mind. What does this picture say to you?

 

Five vials of blood in a row, three with different labels. The vials are not equal in size; one, labelled ‘Down’s Syndrome’ looms large in the foreground. That’s right: it LOOMS. Consider the sinister connotations of this word.

 

What does this suggest? That Down’s Syndrome is a disease? That it is worse than cancer? That it is a deadly scourge to be eradicated, as as we have eradicated smallpox?

 

Down’s Syndrome is NOT a disease. It is a genetic anomaly, a naturally-occurring chromosomal arrangement.

It is in no way comparable to cancer.

It cannot be eradicated, because we cannot prevent babies with Down’s Syndrome from being conceived, and we should not seek to prevent those parents who are so inclined from welcoming a child with Down’s Syndrome into their families.

 

How bitterly ironic that an article at long last calling for balanced, accurate, and up-to-date information about Down’s Syndrome to be given to parents has run with an image that is blatantly unbalanced and inaccurate.

 

Fashion Advice for the NIPT Generation

This morning, completely oblivious to the up-coming A World without Down’s Syndrome documentary, Freddie chose to wear his Christmas jumper. I told him he could choose whatever he wanted, and he chose that.

It’s not what I would have chosen. I chose a short-sleeved top and harem pants I bought for the beach. But then, Freddie is a little boy with not much meat on his bones who doesn’t care what anyone thinks of the pattern on his knitwear, and I am a woman of ‘a certain age’ with plenty of insulation. I spent the day ironing, Freddie sat playing on his iPad, or looking at books. We were both comfortable and happy with our choice.

 

People will choose different outfits even when experiencing the same weather, according to their individual needs and tolerances.

 

Freddie was fully aware that it was a Christmas jumper. He was fully aware that Christmas is in December, and today is only the 5th October. Before we decided on our clothes we had looked out of the window to see what the weather was like, and talked about how it might change later, what was usual for Autumn, and even about how it has been rather warm lately. If we’d been planning to go out, I’d have looked at the weather app on my phone. So, we each had lots of information to help us make our choice. In other words, we made an informed choice.

 

When someone makes an informed choice, they are much more likely to make the right choice for them.

 

 

If, however, I did not consider him able to make an appropriate choice, and considered the Christmas jumper inappropriate, then I might have hidden it at the bottom of the laundry basket from the beginning of January until the end of November. Or perhaps kept the curtains closed, told him it was usually still quite warm in October, so he should choose a t-shirt or he’d get too hot. If he still insisted on wearing it I could keep asking him if he was sure he didn’t want to choose a different jumper. But that wouldn’t have been a real choice.

 

A prescriptive choice is no choice at all.

 

One of the dictionary definitions of choice is: ‘alternative action, or possibility’. Choice, by definition, involves alternatives.

 

A choice in which we are steered towards, or away from, one of the alternatives is not really a choice.

 

Some people really do not want a Christmas jumper. When they go shopping for clothes, they choose not to buy a Christmas jumper. Others, though, are just happy to be getting a jumper, they don’t mind if it’s a Christmas jumper, they’ll absolutely love it, like Freddie loves his.

So, doctors and midwives, if a patient comes to you bearing a Christmas jumper, don’t assume they don’t really want it and arrange for it to be thrown in the bin, without asking them if that’s actually what they want. Don’t ask repeatedly: ‘Are you sure you want that jumper?’ A Christmas jumper is just as much a jumper as any other; it’s knitted, it has sleeves, a hole for the neck, and it’ll keep you warm – it’s just a bit more colourful.

This Value-for-Money life.

There is an article on the Daily Mail website today that has left me feeling rather disturbed. For once, it is not the opinions expressed within the article, nor those implicit in the language or phraseology of it that have caused my discomfort (though there were a couple of unfortunate references to ‘Down’s babies’). The article itself is perfectly reasonable, and gives a voice to the families of people with Down’s. What has disturbed me is the fact that it needed to be written. It begins with this headline:
‘You can’t put a price on a Down’s child’s life! Families’ fury as top doctors say lifetime cost of care to NHS justifies new simple blood test for mothers-to-be’
It then continues:
‘Senior doctors sparked fury yesterday for suggesting the NHS should work out the ‘cost effectiveness’ of caring for children with Down’s syndrome.’ 
Who has a crystal ball that can predict how much any single one of us will cost the NHS? 
Many people with Down’s Syndrome enjoy good health (like Freddie, so far).
But there are also many people (who do not have DS) born ostensibly ‘healthy’ and ‘normal’ who are later diagnosed with some chronic condition or illness requiring ongoing treatment; or who meet with a life-changing accident. These people also need care that will place a cost on the NHS. Are we to analyse the cost of caring for them and decide what their life is worth in terms of treatment costs? Are we to weigh the lives of dustman and doctor, barista and barrister, in the scales against each other to decide which one is worth the cost of cancer treatment, or insulin injections, or a heart bypass?
And what about those people who will be born with a disability or condition that is not detectable before birth? Should midwives be equipped with a calculator and a pillow, so that they can tot up the likely cost of these imperfect lives and snuff out the ones that will prove expensive?
No, of course that isn’t going to happen. I’m being melodramatic. But to many of the policy-makers, the power-brokers, getting rid of any potentially problematic people before they’re born makes sense. It’s the perfect solution.
So, first they demonise the condition, or the people who have it; the ‘establishment’, the ‘status quo’ (medical profession, politicians, press, etc) use only nuanced language in describing the condition, it’s effects, and those people who have it. Information given out presents only lists of clinical features, possible complications and worst-case-scenario prognoses; people are reduced to mere syndromes, devoid of their humanity. Positive examples are dismissed as flukes. Thus we are persuaded that these less-than-human lives are not worth living, and that it is our responsibility, our duty, to prevent their suffering,and our own, before it begins, and relieve society of an unwelcome burden. 
In the case of learning disability it is only a short step from advocating abortion to advocating euthanasia – once we have been persuaded that such people are less than human, and lack the capacity to reason, to make informed decisions, to understand (none of these assumptions we are lead to make are true, by the way).
At the moment it is only possible to detect certain conditions before a child is born, not all of which are life-limiting. But the medical profession seems intent on eliminating these – abortions, even beyond the limit that would be legal for a ‘healthy’ foetus, have been performed for conditions such as cleft palate which is treatable by surgery. How long before we can detect other things, like Autism, before birth? How long before we can detect genetic tendencies before birth: the tendency to become obese, for instance, or to become addicted to smoking, or to develop certain cancers, and so on – all of which involve the likelihood of greater than average cost in terms of NHS treatment and/or social care? How many of us would never have seen the light of day if this had been possible when we were foetuses?
How do you measure the cost of a life, the value-for-money of a life? What price would they have put on Freddie’s life at 13 weeks gestation, when a 1:12 chance of his having DS was detected. No doubt they would have factored in the probability of a heart defect, or Hirschprung’s disease, hearing problems, on so on (as though he was going to have all of these at once. But no one does have them all. Some don’t have any). 

But how do you reckon up the value of this:

‘Soft Eugenics’.

We are waking up to the news that a *New *Safe *Accurate non-invasive blood test for Down’s Syndrome is to be rolled out across the NHS. It will reduce the risk of miscarriage, because it will reduce the need for the invasive tests that can lead to miscarriage, we are told. ‘That can only be good news, right?’ I hear you say. ‘We can now test for Down’s without the risk of losing perfect, healthy babies that have the chance to live productive and fulfilling lives, right?’

     Wrong. We will still lose perfect babies who have the chance to live productive and fulfilling lives. But we won’t be losing them to miscarriage. They will be terminated because they are found to have Down’s Syndrome.

I am not against prenatal screening for those who wish to have it. What I am against is the blanket assumption that a prenatal diagnosis of Down’s Syndrome leads automatically to the termination of the foetus. Having Down’s Syndrome should not carry a death sentence. 

     While the non-invasive blood test is ready for use, what is NOT ready, and not in place is the unbiased support necessary for those given a positive result to make a truly informed decision.

     Attitudes amongst the medical (particularly, Obstetric) profession are outdated, and information is inadequate and inaccurate. Too many parents are left feeling termination is the only option. Some will feel tremendously pressured to take this option if they show reluctance, as I did.

     It has been said (in an interview on BBC Breakfast this morning) that if the first ever screening tests for Down’s Syndrome were invented now, they would not be made available under the NHS, as it would not be seen as the job of the NHS to test for Down’s Syndrome; the implication being that it would be regarded as unethical – ‘Soft Eugenics’.

    Remember – this procedure only tests for Down’s Syndrome (and two other trisomy disorders). Other ‘abnormalities’ are available. And not all can be revealed by screening, so this test, even if negative, does not guarantee you a ‘healthy’, ‘perfect’ baby. Nothing can guarantee that your perfect, healthy baby will stay healthy for the rest of their lives. 

     As we listened to the news programme this morning, my perfect, healthy son, complete with his additional chromosome was showing off his newly acquired literacy skills by reading the subtitles aloud. Luckily, by the time the Down’s Syndrome test was mentioned he was too busy with the much more important task of scoffing his cereal to read about the new danger to babies like the one he once was. 

     Babies with Down’s Syndrome are most at risk in their mother’s wombs. And today, the place that should be the safest of all, for them, just got a little more dangerous.

  
Love doesn’t count chromosomes.