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31st January 2019: We Must #flipthenarrative.

Just two or three days after hearing the play 19 Weeks on Radio 4 and feeling compelled to express my disgust at the inaccurate and dehumanising picture of Down’s Syndrome that the author presents, I came across an online newspaper article headlined:
‘Difficult Reason I Aborted My Baby – And Why Others Should Be Able To Do Same.’
My first thought on reading this was ‘Why is this news?’ Because if this was, as I suspected, a story about termination following a prenatal diagnosis, then it is the same situation that many other couples also face every day. This person’s situation is not unique, so what makes it newsworthy?
My second thought was to question why the headline included a plea for others to be allowed to do the same. UK law already allows termination of pregnancy beyond the usual legal limit of 24 weeks in cases where ‘there is substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.’ (Abortion Act 1967 section 1(1)(d)). Is this, in fact, a plea for readers not to judge this person for making this choice? Are they signalling to us that this should be considered the right and proper thing to do under the circumstances, and that we should not stigmatise anyone else choosing to do the same?
I can tell you that there is no stigma surrounding Termination For Medical Reasons (also known as selective abortion) in the UK. The majority of people would agree that abortion is an acceptable response in cases where a prenatal diagnosis has been made. So poor is the perception and understanding of disability among the general population that they see it as ‘preventing suffering.’ The media are partly to blame for this.
I proceeded to read the article: and my heart sank. It did indeed concern a couple who had decided to abort a baby after receiving a diagnosis of Myelomeningocele Spina Bifida. No attempt was made in this particular article to give the reader a balanced factual overview of Spina Bifida. The baby girl’s condition was described using words and phrases such as ‘life of uncertainty’, ‘disappointment’, ‘worry’, ‘upset’, ‘fear and pain’, and ‘inevitable pain and suffering’.
The readership, at least those with no knowledge or personal experience of Spina Bifida, will forever associate those words with the condition, and by extension, with other disabilities: and no wonder — pick up any article referencing disability in almost any context and the chances are that it will be littered with similarly negative terms. People living with disability are inevitably described as ‘suffering from’ or as ‘sufferers’ (e.g. ‘Down’s Syndrome Sufferer’). The abiding impression we are left with is misery, that the disabled life is not worth living – a fate worse than death. Indeed, the same story covered in another newspaper almost explicitly says so: it begins with the words:
‘She Needed To Be Free.’
Does it come as any surprise that pubic perceptions of disability remain so negative and stereotypical when they are drip-fed ideas like this with their morning coffee?
There are some positive words in these articles. In both the parents are described as ‘brave’. Readers are told that the couple made the decision to abort ‘entirely for the child.’ Words such as ‘selfless’, ‘brave’, and ‘devoted’ are almost universally used by the media to describe the parents/carers of disabled people. Sometimes even abortion itself is described as an ‘act of love’.
Disturbingly, words closely associated with ideas of sainthood and martyrdom crop up in other kinds of articles about disability – when the media covers a story in which a parent has murdered their disabled child. We are invited to sympathise with the parent, but not with the disabled child who has been killed, even though the reality is that many of these cases involve extreme violence: the last moments of the victim’s life are spent in abject terror and pain, inflicted by the person they loved and trusted most on this earth. Read a newspaper article on the story and you will find that the killer is excused, and the person who has been killed ceases to be a victim and becomes, instead, the cause.
Journalists are often required to write under pressure on subjects about which they have no personal experience and little or no knowledge. They rely, therefore, on stock phrases and the ingrained stereotypes that they, along with most others, have unthinkingly absorbed throughout their lives. They may not have the time, or even see the need for, deeper research or to consider another perspective. Perhaps that’s why, when they are called out on what they write, they generally get defensive.
With regards to this particular article, I’m not sure who it is that needs to be called out. Who set the tone for this article – the journalist, or was it the parents? Most of the negative words and phrases used are attributed to the parents, as quotes, and right at the end of the piece we find out why the story has made it into the news. The parents are planning to undertake a sponsored challenge to raise money for charity in memory of their daughter – a very noble aim, but perhaps rather ironic given that they aborted her to spare her from ‘a challenging life’. So, I think it is likely that they contacted the press in order to publicise their fundraising efforts. Perhaps the journalist suggested to them that they phrase their words in this pitiful way in order to elicit reader sympathy to make them more likely to sponsor or donate. Given the harm that negative stereotypes do to people living with disability this certainly is not ethical, even if it is effective.
The couple were also quoted as saying they wanted to ‘raise awareness’. In light of the article’s tone I was left asking myself what exactly it was they were trying to raise awareness of – the realities of life with Spina Bifida, or something else? I had my doubts as to whether many people actually living with Spina Bifida would recognise their own lives in the description given. I think there is another agenda at play here, one set entirely by the couple.
Termination of pregnancy for medical reasons – selective termination – is a very traumatic experience, regardless of the foetal diagnosis or the stage of pregnancy at which the termination takes place.
A Meta-analysis published in the Journal of Obstetric, Gynecologic & Neonatal Nursing summarised a number of studies on the effects of abortion following a diagnosis of both fatal and non-fatal foetal impairments. The study found that following selective termination, not surprisingly, women felt great emotional conflict, for instance, they wanted to mourn but felt they didn’t deserve to. Among the strategies used by women to cope with and resolve their inner conflict are:
Denying the personhood of the baby (dehumanisation): During the course of her autobiographical play 19 Weeks author Emily Steel changes from referring to the child she is carrying as her ‘baby’ to her ‘would-be baby’. The child is effectively dehumanised following diagnosis, and from there it is surely only a short, but for these women perhaps necessary step, to dehumanising those who live with the same diagnosis, as Steel very effectively does.
Limiting the information they sought about the baby: Parents cling to the worst-case scenario and push away or deny any more positive information.
Transferring the agency for choice to others: Women will blame the diagnosis, saying ‘I HAD to abort because of (insert diagnosis)’, or ‘I lost my baby to (insert diagnosis)’. Or they might blame the child itself stating that it would be too difficult to look after, it would damage their career, or would ruin its sibling’s lives.
Adopting a stance of moral relativity: Parents will often assert that it was kinder to abort than to let the child ‘suffer’ life with a disability.
So, it is very likely that this loaded, negatively worded article, ostensibly a plea for help with fundraising, is also a coping strategy, a subliminal attempt by the couple to justify their choice to the world, and most importantly, to themselves, now that they have had time to reflect and are trying to come to terms with what happened.
‘What’s the problem with that?’ you might ask. ‘If they need to talk let them get it off their chest. It’s not good to bottle things up. Abortion shouldn’t be a dirty secret.’
The problem with it is, firstly, is that the couple are not objective – they have shared a very skewed view of life with a disability, and may also have presented an inaccurate picture of the condition their child was diagnosed with.
A couple of days after reading this article I was scrolling through Facebook whilst having a coffee. I came across a post from a casting/modelling agency whose page I follow. They had shared a picture of one of their models, a cute little girl. She was kneeling on the floor, smiling at the camera, eyes shining. I read the biography that accompanied the photos: her parents described her as ‘happy’, ‘cheeky’, and having ‘the best sense of humour’. They said she loves Peppa Pig, playing with toys, getting into mischief, going to nursery, and cuddles. They also said that she’s had a shunt fitted because she has hydrocephalus, and has ongoing bowel and bladder issues which are being ‘treated and managed’ — because this little girl, like the baby in the article, also has Myelomeningocele Spina Bifida.
Can you spot the difference? The description in the newspaper article was nothing more than a list of potential problems, a catalogue of miseries to be avoided, composed by people who had no experience of disability. The second was a description of a person with a personality and likes and dislikes, experiencing challenges but living a good life, nevertheless, and it was written by people with real-life experience of raising a child with Spina Bifida. The first appeared on a mainstream media website read by millions, and the second on the website of a non-profit organisation dedicated to representing models and actors with disabilities and differences.
The second problem with the newspaper article is that it is a very public, very thinly veiled justification for killing a person because they have a disability. You can argue with me till you are blue in the face about the personhood or otherwise of the unborn, but that is not the point here. The point is the attitude towards disability that is displayed and encouraged. We are told, in no uncertain terms, that the child’s life would not be worth living, that they would be better off dead than disabled.
And once you start to consider the Disabled unborn, the foetus, as unfit for life and needing to be freed from the burden of living with disability, then it is only a short distance to travel before you start to look at people actually living with disability in the same way, and say to yourself ‘What a pity their parents didn’t abort them’. In fact many Disabled people have already heard this, said to their face, online or in real life. And then what? Do we advocate euthanasia for disability?
A lot of people believe that euthanasia should be legal. They think it is the compassionate thing to do when someone is ‘suffering’. But suffering is a subjective concept, it means something slightly different to each of us, so who’s definition do we take? And voluntary euthanasia wouldn’t stay voluntary for very long.
We in the Down’s Syndrome community have a particularly acute perspective on this. The law grants women the right to terminate a pregnancy if that is what they want. It’s their ‘choice’. But there is a fine line between giving people the right to do something and imposing upon them the duty to do it – it is a line many of us have trod during our antenatal care. I, and many others, who have had a prenatal diagnosis have not just been offered a termination, but have been pressured to ‘choose’ it. We may be given falsely bleak prognoses that go far beyond the medical facts – my doctor said that having a child with Down’s would probably end my marriage. Others have been asked repeatedly whether they would like to reconsider and have a termination, even after they have explicitly stated that they are committed to continuing the pregnancy, and have asked for this to be recorded in their notes. Mothers going to hospital for induction of labour, looking forward to meeting their new baby, have been offered a termination instead. If euthanasia became legal the same thing would happen sooner or later. Not to mention what would happen to people deemed, by others in their prejudice, not to have the capacity to make decisions for themselves.
In these days when women are encouraged to ‘Shout Your Abortion’ we also need to acknowledge that there is a time and place for keeping quiet: because any discussion about termination for medical reasons –selective abortion — goes beyond the experiences, emotions and personal ethics of those who choose to terminate, and right to the heart of the negative and inaccurate public perceptions of disability which are so damaging, and which are further cemented in the public psyche by biased testimony such as this.
Now this couple’s skewed story has become part of the false, negatively-biased narrative surrounding disability. And as long as these inaccurate and dehumanising stereotypes are perpetuated then more couples will end up aborting planned and wanted pregnancies because they imagine that they have no other option, that their child’s life will not be worth living, because they imagine that they are releasing the child, and themselves, from a life of suffering when in fact none of that is true. The couple speak of their choice as ‘the ethical thing to do’. Was it ethical to publicly share an inaccurate and twisted view of someone else’s reality in order to justify to themselves what they had done? Is it ethical of the media to publish stories like this, given that the subtext they carry encourages misunderstanding and discrimination, not to mention the eugenic removal of Disabled people from society?
No. Neither party has behaved ethically. They have behaved in a way that is profoundly biased and discriminatory.
For as long as the negative and dehumanising stereotypes peddled in articles like this persist, people living with disability will be viewed as a problem: society will continue to perceive disabled people as THE problem, instead of realising that the fault lies with the way that we, as a society, wilfully exclude them from public life by failing to consider them, or to accommodate their needs when we easily could, unnecessarily throwing up barriers to their inclusion. And as long as society continues to view Disabled people in this way, they will be ignored, mocked, vilified, neglected, deprived of their rights, and sometimes even killed, with impunity.
Selective abortion (where abortion is carried out because of some characteristic identified in the individual foetus, rather than because of the mother’s circumstances) is not ‘the best thing’, it is not merciful, it is not ethical. It is the ultimate act of  discrimination. It is eugenics. It should definitely never be ‘shouted’ publicly, as it has been here.
That said, I do feel sorry for this couple. I feel sorry that, after undergoing several rounds of IVF, they have been robbed of their much-wanted child by a society that has brainwashed them into thinking that it is better to be dead than to be disabled.
It’s time to #flipthenarrative.

25th January 2019: Buddha Hasn’t Been Shopping.

We did get our snow day. But it was the wrong kind of snow day — not the kind where you get a text at 7am to say that the school is closed, but the kind where you set out (in my case wearing my daughter’s old combat boots from her Air Cadet days) only to find yourself slithering and sliding over the pavements, which are downhill all the way, and struggling to keep your feet under you on the roads, doing some sort of mad, involuntary, shuffling dance as you glide merrily into the path of oncoming traffic. We got halfway to school then gave up. School said not to worry when I rang them: we weren’t the only ones who’d decided it wasn’t safe to come in.

Later, Freddie told his sister that he’d been ‘skating in my Kickers’.

I made hot chocolate when we got home, fixed him with a stern-ish look and told him we weren’t having the telly on. I gave him a pile of books instead — two on the solar system and the universe, as his class are learning about space for their topic this term, his new one on the human body, and a lift-the-flap book on fractions, decimals and percentages, which, surprisingly, was the one he picked up first. I sat at my desk and started work on a blog post. After a few minutes Freddie asked me what I was doing, and I told him I was writing. He said ‘I’m writing too’, which I took to mean he wanted to do some writing, so I fetched his easel, a roll of paper and the felt pens. After a few more minutes he called to say that he’d drawn a comet and an asteroid. He had indeed been busy drawing — and in an attempt to pull up a clean piece of paper had unravelled the entire roll all over the sitting room. He looked at me with that look, the one that’s half puppyish glee and half a knowing acknowledgement that I can’t tell him off when he’s got his happy puppy face on.

If I couldn’t get Freddie safely to school then there was no way we could get to the shop to restock  our depleted storecupboards (I don’t drive), so making tea involved the use of stepladders — so I could see what might be lurking in the back of the cupboards that  could use to cobble together a meal. Come to think of it, I have to stand on a step-ladder when making pastry if I don’t want backache, and whenever I cook anything in the top oven since I prefer not to burn my arms, so perhaps it’s not such an unusual thing for me to do after all. The struggle is real for all of us – but we each have a different one. I’d probably be moaning just as much if I was 6’5” and had to stoop down to do things.

In the end I concocted something consisting of Orzo pasta mixed with about a dozen frozen edamame beans, coated in a part-used jar of vegan red pesto, mixed with a dingy half avocado that had been pushed to the back of the fridge, some shredded spinach that was hurtling towards the end of it’s shelf life, a couple of depressed-looking carrots that I rescued from the bottom of the veg box and shredded, and a pepper. I sprinkled it all with the last  little nubbin of the lactose-free feta cheese and told them it was a Buddha bowl (a Buddha-hasn’t-been-shopping Bowl). And the family ate it all up. They even told me it was lovely, that they’d eat it again.

It occurred to me, as I ate my dinner, that a lot of people would turn their noses up at a meal like that. Just as a lot of people would turn their noses up at the whole of my life: people who would state, explicitly and emphatically, that they do not want to live ‘that life’, and would take drastic steps to avoid it.

THAT LIFE. My life.

I  wondered ‘What are you eating for your tea, you who would choose quiet grief and mourning over a life like mine. Having freed yourselves from the encumbrances and restrictions that you say such a life as mine would place on you, do you now live in such favourable, such successful, circumstances that you can dine out every night, or employ a housekeeper so that you never have to concern yourselves with mundane things like shopping and cooking, or are you, perhaps, able to employ a private chef?’

No, of course not. Unless you had those things already.

Because, I think you’ll find, ‘that life’ — the one you don’t want to live —  is often almost indistinguishable from the one you live now.

 

 

20th January 2019: Going Viral.

Freddie doesn’t often get ill, so when I heard that there was a tummy bug going around at school I was confident that it would pass us by.  It usually does. I would like to believe that this is down to my dogged insistence on the importance of good hand washing, but in reality it is most probably down to the luck of the draw. On this occasion, however, my hubris caught the eye of a passing rotavirus that decided to come and visit him for the weekend, to keep company with the pounding headache that I had been brewing all day Thursday.

I took Freddie to the toilet at 11pm, as I always do. As he sat there he told me he was hungry, which is quite unusual for him. I think that he’s still in the process of figuring out which internal sensation means which thing. He’s beginning to get it pegged down, but it’s still a work in progress. I could hear his tummy gurgling, though. I told him that it was too late to have anything to eat now, but it would soon be morning, and I listed all the nice things we could eat at breakfast time. When I tucked him back into bed he asked for a snuggle — also an unusual thing for him to do at that time of night — so I got in with him and gave him a hug. Perhaps that’s why I had an inkling of what might be about to happen. As soon as he started coughing I shouted to Daddy to bring a bowl, and in the meantime hustled Freddie back to the bathroom.

I hope the stegosaurus on his pyjama top likes half-digested baked beans because he certainly got a big helping! And all the while I felt like his ankylosaurus mate was whacking me in the side of the head with the bony club on the end of his tail (it’s amazing how much I’ve learned about dinosaurs reading with Freddie).

It seemed like the best thing would be for Freddie and Daddy to swap beds for the night. I’ve always taken my children into bed with me when they’ve been ill, it makes caring for them through the night so much easier, and it’s reassuring for them to have their parent so close. I made us a sort of sick bay den. On Freddie’s bedside table was a drink of water, his teddy, and a triceratops night light, and on mine another drink, placed well away from my phone, a selection of painkillers hidden in the pocket of my dressing gown which hangs on the back of the door, and the spare washing-up bowl — because I’m buggered if I’m stripping beds or shampooing carpets in the middle of the night. And if I did, then who’d be watching Freddie to see if he was about to be sick again? I don’t believe in making life hard work for myself.

I feel the need to point out that we never wash dishes in that bowl, it just hangs around in the laundry room waiting for it’s big break, which will sadly never come now; it’s destined for ever more to be nothing more than an emergency sick bowl. Such a disappointment for a medium-priced household utensil.

Take a tip from me — because it doesn’t get any better as they get older — once your children are old enough to get hangovers, insist they have plastic wastepaper bins in their bedrooms and make sure you have a bin in the car as well.

By a massive stroke of luck Freddie didn’t fall ill until after I’d managed to get all the important jobs of the week done — in my book that’s almost a lottery win. OK, that’s a slight exaggeration, but the nearest I’m going to get because I never buy a ticket — the tenets of my Methodist upbringing must be more deep-rooted than I thought. It wasn’t your respectably middle-of-the-road High Street Methodism, it was a completely independent breakaway church. I was baptised in a wooden shed situated next to a Fire Station (prudent, for a timber construction). I don’t remember whether or not it ran to a font — I might have been dunked in a bucket. It didn’t bother about trivial things like keeping records, so later, as an adult I had to be re-baptised (in a proper font in a Catholic church) alongside an eight-year-old schoolmate of my daughter, whose mother complained that the priest had made the girl’s mascara run (and don’t get me started on some of the First Communion get-up: ‘reformed pole-dancers’ comes to mind).

Anyway, where was I? Oh yes — Freddie and I were able to stay tucked up in bed, watching TV for the whole of Friday morning. We’re now praying for a snow day so that we can do it again, but feeling well so that we can enjoy it, with hot chocolate and hot buttered toast thrown in for good measure. Not literally thrown in — served on one of those trays with fold up legs, and a checked tea-cloth with not too many stains.

It’s just as well I’d got all the business of the week out of the way, because I had some important stuff on last week. I can scarcely believe it’s true, but the time has come for me to start thinking about which High school Freddie will go to. It might seem like I’m jumping the gun a bit, since he’s only in year 5, but Freddie hates change and the transition will not be easy, he needs to be introduced to the idea gradually, over a long period of time. His current school are more than willing to help us with that, but first we need to know which school he will be transferring to.

As Freddie is at a specialist school there are only two suitable schools in the area for us to choose from. I had made appointments to view them both at the beginning of the week, just prior to his annual EHCP review on Thursday, when there would be a lady from the LA in attendance to talk about transition.  I was impressed by both schools, and reassured at seeing them and talking to the staff, but felt straight away that Freddie would fit in much better with the other pupils of the second one I saw. I didn’t take Freddie with me on this occasion. If I had I think he would have made his own decision based on the fact that one of the schools has it’s own therapy dog (luckily for him it’s my preferred school).

The EHCP review causes us much less trouble and heartache than it seems to cause other parents. Freddie started out with a Statement of Special Educational Need, written when he was three. In the drafting of this, we and the professionals involved were greatly supported by one of the nurseries he went to — a specialist setting which he attended for two two-hour sessions a week designed to give him a developmental ‘leg-up’ in preparation for school. It was, of course, run by a charity: you don’t get that sort of help off the Local Authority. The Statement, which was converted to an EHCP last year has, therefore, always worked well for us, and since he is at a specialist school it has always been fully implemented and adhered to.

There is only one thing it doesn’t include provision for, and that is Speech Therapy, as Freddie is ‘verbal’, but the gap between his speech and that of a typical child his age is widening, and so I asked for it to be included on the EHCP. The teacher has referred us — she had the forms filled in and ready for me to sign at the review meeting — but I was warned that the number of referrals being accepted is being vastly reduced. It’s likely we will be turned down: if we are I will just have to start making a polite but insistent nuisance of myself, like that paperclip icon that used to pop up on my computer screen, discreetly tapping whenever I ignored one of the petty rules of English for the sake of interesting writing, or poetry. But everyone knows that you have no business trying to write that on a computer anyway, you have to do it with a quill.

The lady from the LA was keen to impress upon me that I would have to apply for Freddie’s high school place by October this year. She was surprised, though, that I’d not only already thought about it, but had already been to view some schools. I might not have been jumping the gun after all, but it seems I’m still slightly ahead of the game. This is probably because I’ve been through all this before.

You can’t really can’t beat a bit of lived experience.

21st January 2019: 19 Weeks.

Yesterday BBC Radio 4 aired the autobiographical play 19 Weeks by Emily Steel, in which she explores her first-hand experience of late termination of pregnancy following a diagnosis of Down’s Syndrome. Comments in interviews, as well as the content and construction of the of the play itself suggest her primary purpose in writing and staging this show is to break the silence around late-term abortion and to challenge the stigma surrounding it. The play is presented as a series of monologues, and when staged live, as it has been at Fringe Festivals in Adelaide, Perth and Melbourne, it is performed in hotel swimming pools.
Just over ten years ago I sat in a hotel swimming pool – in Durham, as it happens – or rather beside the pool on a lounger, reading a book, my swimming costume stretched tightly over the pronounced curve of my belly. You see, I too was then 19 weeks pregnant with a child who has Down’s Syndrome.
My eyes, apparently fixed on the page, poring over every word, were, in fact, idle and unfocussed; my mind was turned inward, attentive to every tiny flutter in my womb, each one a bittersweet prod recalling to mind the fact that I might have only four days left with my precious child, because I had only four days to go until my 20-week scan, when the doctor would decide whether my unborn child was considered fit to live.
I’d already been pressurised into having a nuchal scan that I didn’t want. When that revealed a 1-in-12 chance that my baby would have Down’s I was told that I would have to undergo an amniocentesis. The appointment was booked for me, there and then. I was neither offered nor signposted to any further information on the condition, or any other support.
I refused the amnio. My consultant was taken aback, and, assuming my decision was prompted by a fear of miscarrying a healthy baby as a result of the procedure, she said that she would arrange for my twenty-week scan to be performed by a consultant sonographer, who would conduct a thorough examination which should detect any of the ‘soft markers’ that betrayed abnormality. That way we could discover whether termination was necessary without risking a healthy foetus. She just couldn’t get her head around the idea that I wanted to continue my pregnancy regardless of any diagnosis.
While my husband swam I stared blindly at my book, wondering if, and how, I could avoid attending that scan. With my obstetric history, missing a check-up would be a risky and irresponsible thing to do, for both me and my unborn child. But my fear was that if any evidence was seen that suggested my baby had Down’s Syndrome, I would be coerced into having an abortion. Such was the persistence of the idea that abortion was the solution to Down’s Syndrome in all the advice that my consultant gave me that, in my vulnerable and distressed state, I was afraid she might have that power over me, that I had inadvertently stepped into some dystopian reproductive nightmare. It took every shred of my will to overcome the palpable fight-or-flight instinct that made me want to run and hide until my baby was safely born and out of harm’s way.
And nobody understood. Nobody.
No one told me that I was doing the right thing. No one took my hand and comforted me and said that I should not feel guilty because I was doing what was best under the circumstances. No one held me when I cried. They rolled their eyes and turned away. They thought I was crazy and some said so. They urged me, earnestly, to stop being sentimental and to do the right thing, the sensible thing, the thing any decent, responsible member of society would do, the thing Emily Steel did: and then we could brush the whole sorry mess under the carpet and get on with our comfortable lives and pretend nothing had happened. Whereas Emily hit her belly when her baby kicked, I cradled mine with both arms, shielding my baby from a world that didn’t seem to want him in it. They say no man is an island, but this woman was an island then, battered on all sides by the storm of public opinion.
Now, that is what isolation looks like. That is what stigma looks like.
There is no need for anyone to challenge the stigma surrounding late-term abortion, because there is NO stigma attached to late-term abortion for Down’s Syndrome. Society accepts that it is the sensible, the responsible, the right, thing to do. That is why in Australia and in the UK, and in many other countries, the termination rate following a prenatal diagnosis of Down’s Syndrome is 90%. It is by far the majority solution. It is, you might say, the ‘done thing’.
The real stigma is directed towards any woman, any parent, who wants to continue with the pregnancy regardless and give birth, give life, to their child with Down’s. It is manifest in the repeated questioning of mothers who are reminded again and again during their antenatal care that it is not too late to reconsider, change their minds, and terminate, even well beyond 19 weeks, even though they have expressly stated that they wish to continue the pregnancy; it is manifest in the question ‘do you want us to do everything we can for your baby’ asked of the mothers who go into hospital to be induced, or have a c-section, because of complications; and in the ‘I’m sorry’ offered to new mothers instead of ‘congratulations’, and in the impertinent presumption of strangers who think it is OK to ask ‘didn’t you have the test?’.
In the eyes of the public, women like Steel, who choose to abort, are viewed with great sympathy, deemed to have suffered a necessary tragedy caused by the scourge of Down’s Syndrome. While their choice IS a tragedy, it is not caused by Down’s syndrome. It is caused by their own feelings about, and reaction to, Down’s syndrome.
In her play, Steel makes her feelings about Down’s Syndrome, those who have it, and those who are parents of people who have it, abundantly clear; she presents an uninformed and wholly inaccurate picture of the condition, and of what it is like to be the parent of a child with it. She presents people with Down’s in familiar and stereotypical ways: always happy, but sick, dependent, and burdensome. Parents are sad victims and selfless martyrs. All the characters except herself are ‘flat’ – not fully rounded humans, but one-dimensional cardboard cut-outs standing in for the reality she does not acknowledge. Perhaps because she does not want to. She even tries to draw a parallel between Down’s and another completely unrelated and vastly different condition, Friedrich’s Ataxia, which she also presents in unflattering caricature. The entire work is just one ableist excuse after another.

The law grants Emily Steel (and other women) the right to terminate any pregnancy if that is what she wants to do. But that does NOT give her the moral right to publicly present a false picture of Down’s Syndrome, or to dehumanise and stigmatise the people who have it (and their parents) in order to justify her choice to her audience. This is a morally repugnant thing to do, because what she is doing is justfying the killing of a person with Down’s Syndrome, and her words may influence others. In signalling to her audience that this is a morally acceptable choice she is advocating selective abortion for disability. This is discrimination. It is eugenics. The killing of a group of people based on a shared genetic characteristic is also one of the definitions of genocide. 19 Weeks is a morally repugnant work.

She made her choice and must take responsibility for it. She must stop blaming Down’s Syndrome for her choice, her tragedy, and examine honestly where the blame really lies – with her own reaction to Down’s Syndrome and the misconceptions, the negative stereotypes and the inbuilt prejudices that persist in society, that cause people to react to the diagnosis with such misplaced revulsion and fear.
In choosing to perpetuate these negativities in her play, Steel has not challenged stigma, she has deepened it; she has not broken any silences, she had added another layer of soundproofing over those of us who are trying to shout the truth about Down’s Syndrome to the world. She has nibbled away just a little bit more from the edges of true reproductive autonomy and freedom.
As long as the falsely bleak picture and damning stereotypes surrounding Down’s Syndrome persist in society, perpetuated by Emily Steel and others, then more and more parents will be forced to terminate wanted pregnancies because society does not allow them to believe that there is any other option, when a prenatal diagnosis of Down’s Syndrome has been made. They will then have to endure, unnecessarily, the lifelong grief of losing a child –a child they could have raised in love and hope and joy — because society discouraged them from seeing their foetus with Down’s Syndrome as a baby with potential and abilities and a future.
While you, Ms. Steel, are bravely ‘shouting your abortion’ – a socially-sanctioned course of action supported by 90% of the population, the other 10% are quietly screwing up the huge amount of real courage it takes to defy an entire society and its inbuilt prejudices. Do you know how much courage this takes? I do. And so do my brothers and sisters in the Down’s Syndrome family. We do it every day: not with bitterness and grief, but with love and joy and all the guts and strength those driving forces bring.
#wouldntchangeathing

If you would like further information on Down’s Syndrome, visit https://positiveaboutdownsyndrome.co.uk a website by parents for parents and parents-to-be offering information based on real-life experience,
Or
The Down’s Syndrome Association http://www.downs-syndrome.org.uk/

30th December 2018: Just Because We Can, Does It Mean We Should?

‘Just because you can it doesn’t mean you should.’

I say this a lot, most often to Freddie and his sister when they demonstrate how they can lick the end of their own noses: a thing that both they and their father can do, but I and my eldest son cannot. I often wonder if this is just down to a difference in face shape, or if it is a genetic thing.

My knowledge of genetics is rudimentary to say the least — no surprise there, after all genetics isn’t something that a humble housewife really needs to know about, is it?

Actually, as the mother of a child with Down’s Syndrome, one who has chosen to stick her head above the parapet as a blogger and advocate, I find it very helpful to know a bit about the subject: not just to aid my own understanding of Down’s Syndrome, but to counter the nonsense I come across on social media, where people who know nothing about DS try to argue that those who have it are less than human, and therefore less deserving of resources, respect, dignity, compassion, and even life itself.

But, as I said, my knowledge is rudimentary. So it was with great interest that I sat down to watch the Royal Institution Christmas Lectures: Who Am I? in which Professor Alice Roberts, aided and abetted by Professor Aoife McLysaght, explored human evolution, our place on the tree of life, and the incredible diversity found in the human species.

I was particularly looking forward to the second and third lectures, and they didn’t disappoint. In the second one, What Makes Me Human I was reminded about DNA sequences: the unique code that distinguishes the DNA of one individual species from that of any other species on the planet.

So, you see, no matter how many chromosomes a person has (whether they have the typical 46, or, like my son, an atypical 47) every single strand of the genetic material contained within those chromosomes contains a DNA sequence that is uniquely, unequivocally, human. He is, therefore, as uniquely, unequivocally, human as everyone else and his humanity and personhood cannot be called into question.

Not that I was ever in any doubt about this, of course, not for one moment, but now that I have seen it properly and straightforwardly explained, I can articulate this fact into solid ammunition against the Twitter trolls who spout any and every argument to assert that people like my son should not be accorded the same right to life (resources, etc) as typically-developed people, as they are somehow not quite ‘human’. Believe me, I’ve come across some pernicious rubbish in this vein — Twitter can be a brutal place for parent advocates like me; the only reason I keep returning to this punishing sphere is because I am not willing to lie down and let the bullies and bigots have the last word.

The third lecture: What Makes Me, Me? explored the genetic reasons for the incredible diversity of the human species, and how our increasing knowledge of the role that genes play is enabling the development of new technologies that can ‘fix’ problems caused by faulty genes, or predict an individual’s susceptibility to certain diseases in order that preventative measures can be taken.

I don’t think anyone would argue against the use of the gene therapy technology that allowed a child, born with a faulty gene that left him defenceless against infection, to grow into a healthy young man with a functioning immune system. But …

and there is a but …

The technology that allows us to alter or replace one, problematic, gene also allows us to alter or replace other genes, even those responsible for human characteristics which are not problematic, but may be viewed as either more or less desirable for subjective reasons.

At this point in the lecture I heard a familiar phrase: ‘Just because we can it doesn’t mean we should.’

The first thought that popped into my head was of a recent news item: the claim made by Chinese scientists that they had ‘produced’ the first ‘genetically engineered’ baby — in this case genetically engineered to have increased resistance to the HIV virus. That’s great, right? Not neccessarily.

Genes are complex things, the way I understand it, they are seldom responsible for just one thing. Anything we do to alter any one gene may potentially have unanticipated knock-on effects. For every silver lining there is a cloud. I was reminded that there is a relationship between a naturally-occurring genetic adaptation that gives certain populations a greater resistance to malaria, and Sickle Cell Disease. I confess I’m not conversant with the science of this, but it suddenly seemed relevant.

The young people in the audience were asked to imagine that tests were available which could predict their likelihood of developing Alzheimer’s disease, Type 2 diabetes, and cancer: would they want to know?

The ratio of ‘yeses’ to ‘nos’ varied with each disease — clearly they had taken into account the fact that an increased risk of Type 2 diabetes can be mitigated by lifestyle changes, and onset of the disease can be treated by lifestyle and dietary means, and medication if neccessary. Likewise an increased risk of certain cancers can also be mitigated by lifestyle factors, or by other preventative measures, including pre-emptive surgery in some cases. But Alzheimer’s as yet can neither be prevented or treated. Not everybody would want to live their lives in the shadow of foreknowledge.

There is, as the Professor Roberts and her guest, Bioethicist Professor Heather Widdowes, pointed out, another aspect to be considered when contemplating genetic screening: confidentiality. While each person is genetically unique in that they have a unique mixture of genes, the genes they have are not exclusive to them, they are all inherited from their parents. So, if you have genetic information about yourself, you also have genetic information about other members of your family — who themselves may not wish to have that information, and may not want anyone else to have it either.

My ears really pricked up when they began to talk about the one instance in which we routinely offer one person a DNA test which looks not at their DNA, but at that of another individual — antenatal screening. The screening test for Down’s Syndrome has become such a routine part of antenatal care in the UK that many women simply accept it without question, and perhaps without considering the purpose or the full implications of the test: if the result is positive they are then faced with a very difficult decision for which they were not prepared. At this point we were introduced to Donna, a mum who had a positive antenatal screening result, and her daughter Frankie. Fortunately, Donna did not view the result of the test in a negative light, and used it to prepare herself for the arrival of a child with Down’s syndrome. In an ideal world, this would be the primary purpose of the test.

The lecture ended on a high, with a lovely musical celebration of human diversity. In an ideal world, we would all celebrate diversity.

But sadly we don’t live in an ideal world.

Too often, mums are pressured into accepting antenatal screening as necessary, even ‘required’ without being given either the information or the opportunity to consider the full implications of having this information. All too often mums who, like Donna, like me, had a positive screening result are steered, and sometimes pressured, towards termination regardless of our own, expressed wishes. It seems the medical profession have fallen into the habit of regarding prenatal screening as a ‘detect and destroy’ mission, rather than as an opportunity to allow women to make an informed choice, to prepare themselves for the birth of a child who is a little different if that is what they wish to do, and to offer these mums and babies some extra check-ups.

Even my older children’s Catholic High School, during ethical debates in RE lessons, encouraged the idea that termination of pregnancy for disability was a mercy and ‘prevented suffering.’ So few people are prepared to question the ethics of this view.

This is why I welcome this year’s Royal Institution Christmas lecture so much. This is why I applaud Professor Roberts, not just for the content of her lectures, but for addressing the ethical debates involved; for addressing the fact that we NEED to have this debate. I am particularly glad that it was considered a suitable topic for an audience of children and young people. I hope that Prof. Roberts and her colleagues have opened the minds of these youngsters to a different, more questioning, viewpoint.

In an ideal world, and more especially, in the very un-ideal world we live in, I would like to see these lectures shown in every high school in the country.

If you haven’t already seen this year’s Royal Institution Christmas Lectures on BBC 4, they are available on BBC iPlayer for another 25 days.

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‘I make no apology: this is me.’

25th December 2018: Merry Christmas.

Merry Christmas everyone. I hope you’ve had a good day, whatever a ‘good day’ looks like in your house.

Now, I’ve said before that Freddie having Down’s Syndrome hasn’t made a great deal of difference to our day-to-day lives so far, and as far as Christmas is concerned it’s made no appreciable difference at all. We do, however, have one special rule at the Christmas dinner table (apart from the pre-existing one about not turning up two hours late with a face like a smacked arse saying ‘you needn’t have bothered, a cheese sandwich would’ve done me’), and that is that everyone has to pull their cracker with Freddie. He loves everything about crackers – the bang, the little knick-knacks inside, and best of all – the truly awful jokes!

Jolly old Santa decided it was high time I was forgiven for dropping my phone in the sea the summer before last, and delivered me an upgraded model (and not being your average parcel delivery service, didn’t lob it over the back gate or leave it in a puddle by the front door). So I no longer have to be sat at my desk to annoy you all with rainbows and unicorns – I can do it from the sofa, the loo, or the back of a bus, because this one will run the WordPress app.

The phone was a nice surprise. I also had a not-very-nice surprise, because life is not perfect, but sometimes has a sort of perverse symmetry about it. I had been so looking forward to cooking Christmas dinner in the double oven at what Freddie still calls the new house. But on Saturday evening the large fan oven on the bottom gave up the ghost, leaving me with only the tiny top oven. Just as I was in the middle of baking a ham and mince pies, shortbread biscuits and trifle sponges for a pre-Christmas get-together. And with three joints of meat, pigs in blankets, stuffing roast potatoes and parsnips to cook for dinner on Christmas Day.

What’s a girl to do?

The only thing I could do was take everything out of the freezer a day early, and cook all the meat in relays on Christmas Eve, watching whatever films were on the ‘council’ telly in the kitchen. Having promised the kids duck and pancakes for tea I also had to shoehorn a whole duck in, too. Luckily our unheated laundry room makes an excellent cold-store, so much so that we’re thinking of leaving it unheated. But by Christmas morning the meat was cold enough to slice beautifully, and all that was left to cook was the potatoes and trimmings. I was able to take my time over the presents, and even had time to set up my new phone before I had to venture into the kitchen.

Going with the flow, rolling with the punches, made everything so much less stressful. And, ultimately, everything worked out for the best.

Fashion Advice for the NIPT Generation

It was Christmas Jumper Day at Freddie’s school on Friday. Freddie loves a Christmas jumper, so here’s a post from the archives on that very subject … But actually, it isn’t really.

47 Stripey Socks

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…

View original post 389 more words

22/11/2018: Now We Are Ten, part 2.

Freddie will be celebrating his tenth birthday on the 23rd, and so this month I have written a series of three related posts pondering the last ten years, and looking forward to the next ten. This Second post is a letter from me to Freddie:

“I must have been very tired, but I don’t remember that now; I just remember being happy that you were home with us at last…”

To read this post, please click here:

Now We Are Ten: A Letter To My Son.

22/11/2018: Birthday Eve.

Right now, I am content. Contentment is a much underrated emotion. No one can be ecstatically happy all the time, but it is possible to be generally contented day-to-day, and it is a lovely warm, calm, comfortable feeling. I am lying next to Freddie, his cheek is resting on the teddy his granddad gave him, his breathing deepening into sleep. It has taken him a while to settle down: he was fizzing tonight because tomorrow (or today by the time you read this) is his birthday.

Tomorrow will be a day of excitement, of delighted laughter, paper-ripping, candle-blowing and cake eating. There will be chocolate cake to share with friends at school, and a dinosaur cake to share with family at home. And, of course, there will be presents — mostly toys and books, and one or two other things, like a snuggly onesie. Freddie does love to doss around the house in a onesie, he likes comfort, and, like me, he loves to read.

What tomorrow will not be is a melancholy ‘what if’ day. I won’t be asking myself ‘what if things had been different? What would life be like now? What would Freddie be like now?’ I won’t be saying ‘If only …’ It doesn’t bother me that his presents probably aren’t the kind of thing that a typical ten-year-old boy would want. Freddie will love them, and I can’t wait to see his face when he tears the paper off.

Tomorrow is not about my expectations of parenthood. It’s about his experiences as a child.

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