The ‘Downright Discrimination’ Court Case.

Tomorrow, Heidi Crowter, a young woman with Down’s Syndrome, and Maire Lee-Wilson, mother of a young son with Down’s Syndrome, will take the government to court to challenge a law which allows foetuses with Down’s Syndrome to be aborted beyond the usual 24-week limit, right up to full-term. I support them.

This case is not about banning abortion. It is not about imposing further limits on a woman’s right to abortion — the law already limits a woman’s right to abortion to 24-weeks in almost all circumstances. This case is only about challenging a specific instance of inequality in the law.

To view abortion on the grounds of disability solely through the lens of women’s rights is both short-sighted and ableist.

A law which allows a foetus with Down’s Syndrome to be aborted in circumstances where it would be illegal to abort one without Down’s Syndrome is a law which encourages us to view people with DS as undesirable and disposable, as ‘better off dead’. It devalues their lives even before they are born.

The rights of people with Down’s Syndrome ought to be equally as important as the rights of women. And it goes without saying that the rights of women ought to be equally important as the rights of men.

Even in this day-and-age our law-makers, our-policy makers, are mostly men: which is perhaps why we have legal limits on abortion.

A society that truly values women’s rights and truly wants to give all citizens equality would, perhaps, impose no limits on abortion at any stage of pregnancy or for any reason. It would be a matter between a woman and her doctor, and no one else’s business. Then, perhaps, no one would feel the need to demonise Down’s Syndrome and paint an unrealistically bleak picture of it in order to justify the choice to terminate.

But, it seems, there is little public appetite for this, even among women.

A society that truly believes in choice and trusts women to make their own choices would, undoubtedly, offer equality of care and would put in place a pathway of care for women wishing to continue with a pregnancy in which Down’s Syndrome has been identified, equivalent to the one that already exists for those who wish to terminate the pregnancy. Such a society would not presume that all women will, or should, want an abortion. This might be a route to equality in the eyes of society — ‘equality by consent’ so to speak.

At present there is no care pathway in place for those who do not want to terminate, because the medical profession does not believe that it is necessary, so any move to institute one would have to be accompanied by a sea change in attitudes towards Down’s Syndrome amongst the medical professions in order for this to become, not just a viable option for individual women to take, but also a viable route to ‘equality by consent’. Such a change in attitudes would take decades, and longer still to filter down to society in general.

The truth is the establishment, the dominant population, the majority, call it what you will, never willingly give equal rights to those on the margins — they give them only when their hands are forced. The case that Heidi, Maire, and their team are bringing to the High Court does not seek to take away someone else’s rights, but merely to take back a right that should be accorded to people like Heidi and Aidan by default, but which society has been withholding.

Women are not the only people who are entitled to rights.

Women who choose to terminate are not the only women entitled to reproductive rights.

Where was my right to have my choice to continue supported?

More importantly, where is my son’s right to equal protection under the law? His right to equal treatment? His right to be considered of equal value to his brother and sister? His right to a life free of discrimination — discrimination that begins in the womb?

What does the current law say to him?

#HoldHands4Equality #EquallyValued #DownrightDiscrimination #ImWithHeidi #ImWithAidan

A Day in the Life.

It was just another bog-standard, ordinary day here at HMP Stripey, the gingerbread semi-detached where my family and I are serving out the so-called life sentence handed down to me for the crime of defying societal expectations.

Himself (AKA My-Lord-and-Master) was yelling from the living room that he couldn’t find the TV zapper. Where was the zapper? HAD ANYBODY SEEN THE ZAPPER? The Guard Pug was zooming around the house, bug-eyed with rage, threatening to bite everyone’s face off if it wasn’t found yesterday. In the midst of it all I, ever the drama queen, very calmly, quite casually, almost with an air of boredom, announced to whoever happened to be listening that the toaster was on fire. I had to say it three times before Himself, annoyed that I had interrupted his crisis for something as trivial as a blazing domestic appliance, came to deal with the situation. Without any thought for his own safety, he bravely snatched up the (conveniently already-switched-off-and-unplugged) toaster and hurled it out into the yard, thus saving the day, not to mention the kitchen.

The cause, he instantly divined, was our Son-and-Heir, who, he said, had been poking around in one of the slots with the meat tongs and had probably broken one of the elements. Son-and-Heir, drawn into the kitchen by all the commotion to find that there had been an incidental toaster fire on top of the real emergency, responded to this accusation, saying:

‘Well, how else was I supposed to get the burger out?’

Yes, it was just yet another bog-standard, ordinary day in HMP Stripey.

History on a Plate.

Welcome to the Stripey Socks Crisis Homeschool and Cafe, where the staff are completely unqualified and the Hygiene Rating is 5 (dog hairs per square millimetre, that is). During the last lockdown we had a ‘history lesson on a plate’ involving some Smith’s Chipsticks. Today I went Old School again, serving up corned beef rissoles with steamed cabbage. I’m sure my family will be very grateful.

It was also a social history lesson. Himself (AKA My-Lord-and-Master) thought it was a recipe from a communist-era Eastern Bloc country. He had never encountered a rissole before, either in reality or even in name, and was surprised to learn it was a staple food of my childhood, growing up in a largely working-class area in the 1970s.

Next week: tripe. Or maybe even cow heels if you can still get them. A few more of these ‘history lessons on a plate’ and he might stop complaining when I dish up ready-made pizza 😆

Merry Christmas.

Merry Christmas. Today I found out that Santa reads my blog! I know this because he shoved a Yankee ‘Pugs and Kisses’ candle in my stocking.

I must confess that I was perversely disappointed when I lit it and it didn’t smell at all like someone lit a Pug fart.

Hope you’ve all had a lovely day Xx

Pass The Gin.

12:00

Is midday too early for gin?

Don’t say ‘I told you so’, Doreen. Don’t say ‘I told you it was hard, raising a kid like that‘, because it isn’t any of my kids (whatever the chromosome count) that’s driven me to drink.

It’s the dog.

HMP Stripey’s resident Guard Pug is either asleep or behaving like a toddler on crack. Freddie and I were doing some of his school work, researching Christmas in Colombia, when Daughter Dearest (AKA Her Loveliness) popped her head around the door to say she’d got to go out: would I look after Dizzee for half an hour?

Within five minutes Dizzee had shat on the carpet in protest at being left behind, helped herself to a snack of Christmas wrapping paper while I was cleaning up the poo, and chewed the corner off a brand-new, hand-painted wardrobe.

Then I dropped the cap of my big red marker pen. She spotted it where it had landed before I did, snaffled it up and began chewing. I caught her and tried to get it out of her mouth … she gulped … and the cap was gone.

Dizzee weighs 4.8 kg and has a head the size of a Navel orange. I didn’t need a vet to tell me that there was no way that pen cap could pass through her tiny intestines without blocking something vital. I was amazed it hadn’t choked her. As soon as Her Loveliness came back I lugged the pug straight up to the surgery (she wouldn’t walk, the pavement was wet). The vet confirmed what I thought. The cap couldn’t be left where it was, it would have to come out one way or another. Given the size of the thing compared to the size of the dog’s short, narrow gullet, if they gave her an injection to make her vomit there was a good chance she would choke on it on the way back up. If we left it where it was it would inevitably cause a blockage, making her dangerously ill and in need of major surgery. The safest option was to remove it using an endoscope – but for that she would have to be referred to a veterinary hospital that had the required equipment, either five miles across town or 40-odd miles away in the next county, whichever could fit her in first. I was to take her home and wait for a call from the hospital.

Feeling wretched, I took the poor pup back, and while Daughter Dearest tried to arrange an urgent absence from work to be able to take her to whichever hospital it was to be, I slunk back to the table in my room and got Freddie restarted on his school work. As I pulled my chair closer to the table I felt something small and hard under my stockinged foot. Anxious to avoid the risk of our greedy little Guard Pug ingesting another foreign object, I bent down to investigate and pulled out …

… the black, plastic cap off a big red marker pen. Complete with tiny fang marks. It must’ve fallen out of her mouth and rolled under the table.

Her Loveliness made me ring the vet to explain. I felt such a berk. But I’ve never been so happy to look, and feel, like a berk in my life.

To celebrate her reprieve, Dizzee crapped on the carpet again. But this time, as if sensing that she might be just a little bit in the dog house after the morning’s escapade, she decided to clean up after herself.

‘Wait,’ you cry. ‘How does a dog clean up …’

Oh yes!

That is exactly what I mean.

She ate it.

I’m quite glad that I never managed to get hold of one of those Yankee ‘Pugs and Kisses’ candles. Because now I know what Pug kisses probably smell of.

How can you get cross at a little face like that?

From The Archives: Fashion Advice For The NIPT Generation.

Last Friday was supposed to be Christmas Jumper Day at Freddie’s school, but his class were sent home on Thursday with instructions to self-isolate until the 21st. So we wore our Christmas jumpers at home instead. Freddie loves a Christmas jumper no matter what time of year it is, and with that in mind I wrote the following post, about four years ago. It is just as relevant today.

FASHION ADVICE FOR THE NIPT GENERATION.

This morning, even though Christmas is many weeks away, 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.
An enforced 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.

In The Bleak Midwinter.

Thanks to Covid, the gift that keeps on fucking things up, I had a call from Freddie’s school on Thursday to say that his class were being sent home to self-isolate until the 21st. That’s the Autumn term finished for us, then. So, I immediately did what any other poor martyr would have done — with a shaking hand I poured a pint of gin and gulped it down between sobs, whilst penning a letter to Father Christmas begging him to bring me a nice, normal family instead. By Friday morning I was swivel-eyed and rocking in a corner.

Or, at least, that’s what Mrs. Clueless of Twitterland would have you believe. Do me a favour, Mrs. Clueless, stop shouting your ignorant drivel over those of us who actually know what we’re talking about. Make a New Year’s Resolution to shut up and listen instead.

In the real world, of course, I did what any other mother in that situation would do — I picked my child up, took him home and required him to change into his onesie so I could throw his school uniform and all the other possessions that had been in school with him into the washing machine. Then I made us all some lunch. By Friday we had carried the garden table upstairs and put it under the window in my room, and, while Freddie got on with some of the activities school had sent home, I was sat in an easy chair beside him with a cup of hot coffee, watching the rain outside and feeling as snug (and as smug) as a pug in a rug. The Guard Pug (who is still considering biting your face off, but still might content herself with giving you side-eye so bad that you slink away in shame), meanwhile WAS actually as snug as a bug snoozing under a rug on the bed.

Once Freddie had done a few sheets of the official school work, we went downstairs and, for a bit of fun extra maths, I got Freddie to work out how much flour, fat and sugar we needed to make a batch of shortbread. I showed him how to shape them into little buttons using two medicine cups and a chopstick. Once the biscuits were baked and cooled we filled a big glass jar with them and placed it next to the kettle, so even though we can’t actually go out to a coffee shop, we can still have a cuppa with a posh little biscuit on the saucer.

I shouldn’t need to point out that the reason we can’t go to a coffee shop is Covid — we live in a tier 3 area. I have no problem, in normal circumstances, in taking Freddie into a cafe. We used to go into our local branch of Caffe Nerd quite often, in recent years anyway, since Aunty Clara Beans sold her artisan establishment in town, turned her back on home-made chocolate cake and crusty-bread sandwiches, and in a dizzying career change that makes my head spin to this day, became a consultant for weight-loss club. After that Freddie became very partial to Caffe Nerd’s Ginger Giovanni biscuits, until they changed the recipe, that is. Then Giovanni became a revolting oaf who smelled of cloves. Being complete tarts when it comes to food we simply transferred our affections elsewhere — to a place that serves real chips made in a chip-pan, and uses proper china cups and sugar in cubes not paper sachets.

But they’re closed right now, and we’re self-isolating, so we’ll just have to make the best of things. All the school work will be finished by lunchtime Monday, so then we’re off to the panto — a panto streamed to the living-room TV, that is. We’ll close the curtains and pretend we’re in the theatre, only with comfier seats, better snacks and no annoying fellow patrons.

Yes, the Christmas holidays have come a week early to HMP Stripey, albeit with four-hourly temperature checks (just to be on the safe side).

The Spirit of Christmas Present.

Don’t believe the bitter picture.

I’ve been sticking a middle finger up to ARC’s ‘Down’s Syndrome is a life sentence’ rhetoric for twelve-and-a-half years now, just by choosing to continue and thriving on the life I now live. But today I am putting that middle finger down just long enough to wish them, their corporate partners, the Emmerdale Production team, and the Uncle Monty’s at ITV a very Merry Christmas indeed. May the Spirit of Christmas Present sprinkle his magic dust over all your festivities, filling your hearts with love, joy and goodwill to all men.

Because, God knows, you need it. More than most.

A person, or persons, in, or close to, the Emmerdale Production Office has had a termination on the grounds of Down’s syndrome, that’s my betting. That’s their choice and their private business. But, triggered perhaps by the presence of ‘Leo’ in the show, they are now having a hard time reconciling themselves to that choice, and in their grief and anguish they have started lashing out at the Down’s Syndrome community in a very public way. This is not acceptable, no matter how much they are hurting. This is an attack on a vulnerable group of people with protected characteristics, whose rights were not considered during production. It breaches Section 2 of the Ofcom broadcast code (harm and offence) which states: ‘If there is an under-representation, the use of stereotypes and caricatures or the discussion of difficult or controversial issues involving that community may be seen as offensive in that it is viewed as creating a false impression of that minority’. It may also be in breach of Article 14 of the Human Rights Act (Protection from discrimination). It cannot be allowed to pass unchallenged.

If there is one thing for certain it is that seeking to exorcise their ghosts in this way will not, ultimately, make them feel any better. What will their Christmas festivities be like? Filled with thoughts of what might have been. If only …

If only their baby hadn’t had Down’s Syndrome?

How about if only we gave people accurate and balanced information based on real-life experience? If only we stopped automatically equating a pre-natal diagnosis of Down’s Syndrome with termination of pregnancy and funnelling people down that route? If only we could let go of our age-old prejudices and allow people to believe the happy picture? How about that?

Despite the best efforts of Emmerdale and ARC to piss all over people with DS and their Yuletide celebrations, here at HMP Stripey we are already getting into the festive spirit with a vengeance. On Friday, sick of spending a bloody fortune on delivery charges, I treated myself to an in-person visit to Sainsbury’s.

Face mask – check.

Hand sanitiser – check.

Nail-studded baseball bats strapped to back – check (wrapped in tinsel – it is Advent, after all).

It felt like a cross between a dangerous mission and an illicit love-tryst, going into an actual shop for the first time in months and browsing at things that are not, strictly speaking, essential for my day-to-day needs, like Christmas pyjamas, colourful table runners, and candles that smell absolutely nothing like figgy pudding. I was really disappointed to find that they hadn’t got any of the ‘Pugs and Kisses’ variety among their collection of Yankee candles. I’m really intrigued to find out what the fragrance of that might be. Pug farts? Burning dog hair? Never mind. I came away with some praline syrup for my coffee and some nice things for the Christmas Eve box.

I make no secret of the fact that I find Christmas as a mum equally as exciting as I found it when I was a little child. And, as Freddie is maturing more slowly than his brother and sister did, I am selfishly quite glad that we get to keep the little kid Christmas magic for a while longer than most. Maybe forever. We all need a bit of magic in our lives, don’t we?

Unlike my friends in the posh county next door, here in the cheap seats we haven’t been given any official edict detailing the precise date and time at which residents are expected to switch on their Christmas lights or risk being run out of town by the neighbourhood watch on their mobility scooters. But, me being me, I would probably have ignored any such edict and put them up whenever I damn well liked anyway. So, on Saturday the first batch of mince pies was baked and consumed while me and my mother (put the phone down, Doreen, we’re a support bubble) assembled our new, fake, will-it-be-a-tree-or-a-giant-toilet-brush.

Prices for a decent, realistic-looking artificial tree seem to range from about £400-£1,000. My budget was £30, so I really didn’t hold great hopes for the contents of the box that has been standing in my hallway for the last two weeks, whispering of disappointment.

D’ya know — it’s not half bad, this budget bog-brush. Once festooned with all the lights, garlands and baubles it looked quite a lot like a Christmas tree, after all. In fact, it might just be our best tree ever. We put lights up in the kitchen, too, and hung baubles from the dining room light-fitting with invisible thread. We are far more grotto than grot-hole, whatever you might imagine about the living conditions of people like us.

Sunday morning saw me sanding down my crusty drawers. No — hygiene conditions around here aren’t that bad — I was buffing up the drawers for our home-made advent calendar. Actually, it’s not so much home-made as home-decorated. I wish I was that good at woodwork, but when I was at school girls were not encouraged to pursue such subjects — our choices were being controlled even then. Those ‘technical’ or vocational subjects that were considered most suitable for girls were so de-valued that no boy would voluntarily choose them even he had an aptitude for that sort of thing. It isn’t the case that all men control all women, but that some men (the ‘elite’) seek to control everyone who is ‘beneath’ them in rank. The Patriarchy hurts men too. Perhaps this lack of technical education is why I managed to superglue a number six to my thumb and why my fingerprints were glazed over with adhesive, glitter and splinters. Looking on the bright side, at least I didn’t need to use an exfoliating mitt in the shower.

I tried to get a bit creative with the Advent chest, putting the drawers in a random order so that we would have to look for the correct number each day, but Freddie did not like that idea. He kept chanting the numbers 1-25 until I got the message and agreed to put them back in date order. With calm soon restored, we played a board game, then made warm drinks and watched ‘The Bear’ together with only the tree lights on. I can think of worse ways to spend a Sunday evening even when we’re not in some kind of lockdown.

Because of the ongoing Coronavirus restrictions, this year, in a fit of goodwill, we treated the gingerbread semi to a set of outdoor lights, to spread some cheer to our neighbours, passers-by and weary travellers on the A-road. If we can do nothing else this Christmas we can at least get out for a nice walk on the crisp winter evenings and go fairy-light spotting, wrapped up snug in our Christmas jumpers. Freddie loves a Christmas jumper, he’d wear them all year round if I let him, which I tend to do because I know what it is like to be told that the choice you want to make is not a valid choice.

‘Oh Christmas Tree, Oh Christmas Tree, your branches are so gaudy. Your baubles cheap, your tinsel’s naff, your angel is so tawdry. It’s my own fault you’re not much cop, I should have shopped till fit to drop, in Marks & Sparks and Debenhams instead of in the Pound Shop!’

Christmas is Coming.

Sod it! I’m declaring Christmas at the little gingerbread semi-detached by the side of the A-road where the woods used to be. This year we will glide seamlessly from celebrating Freddie’s birthday to celebrating the festive season; the first mince pies will be baked on Friday, ready to consumed this weekend as birthday banners give way to tinsel here at HMP Stripey, as we have taken to calling our house. We call it that because, twelve-and-a-half years ago, when I called ARC looking for support in continuing my pregnancy and preparing for my new arrival after a prenatal diagnosis of Down’s Syndrome, the friendly, non-judgemental, non-directive call handler confidently predicted that I would be facing a life sentence and hinted that it might be wiser to reconsider my decision.

Yes, Freddie is now twelve, and has morphed overnight from a rosy-cheeked cherub into a long, spotty streak, all knees and elbows. Well, that’s one developmental milestone we have hit bang on time.

Gripped by a sudden fear that the Christmas tree farms would not be allowed to open, leaving hoardes of Christmas shoppers fighting outside Aldi over the Nordmann spruce, poking each others’ eyes out with candy canes or lacerating their fellow men with ill-will and holly wreaths, I panicked and returned to my common-as-muck roots by ordering an artificial one. In fact, I went full prole and chose a seven-and-a-half footer. Himself (aka My-Lord-and-Master) considered this act a horror on a par with the time he saw me make a sandwich by scattering crisps on a slice of bread and marge then folding it in half. He said it would either be like the Griswold’s tree, or a giant monument to toilet brushes.

Speaking of which, 2020 has been a turd of a year both generally and personally. Maybe you can’t polish a turd, but I can certainly roll the end of this one in glitter.

Dear Emmerdale Viewer.

Dear Emmerdale Viewer,
The Emmerdale Production Office aren’t reading my emails – that much is clear from the token copy-and-paste response they sent that addressed precisely none of the points I raised: the exact same response, word-for-word, that they seem to have sent to every person who has contacted them to express concerns about the upcoming storyline in which Laurel and Jai seek an abortion after being told that their unborn baby will have Down’s Syndrome. The wording of it could have come straight from the website of Antenatal Results and Choices (ARC), an organisation which seems to have been Emmerdale’s only advisors on this storyline and their sole source of research material. This fact alone is a cause for concern.
No, it seems that the storyline is a done deal, filmed and in the can, and it will go ahead as is, despite the concerns of the Down’s Syndrome community, so I’ve given up talking to them. Now I want to talk to you, Gentle Viewer, if I may beg your indulgence for a few minutes, to explain what all the fuss is about, because you might be wondering why some of us are getting ourselves into a tizz about this. After all, you might say, there are people out there going through this dilemma for real every day – don’t they deserve to have their story told?
That is certainly what the Production Office at Emmerdale think, their pro forma email states: ‘we think it is an important one to tell’ and ‘will do much to break the silence around this sensitive topic’.
The so-called silence around this subject is actually deafeningly noisy if you take the time to listen – this is a story that has been told time and again, in the tabloid press, in radio plays, on TV, on social media, usually at full volume with big, black, shouty headlines such as ‘Why I HAD to abort my baby’. In all of these pieces Down’s Syndrome is the villain, as women detail all the ways that this ‘devastating’ condition would render their lives unliveable, how their ‘much wanted’ child was destined for an existence of physical pain and torment, and how their decision was ‘an act of love’. Emmerdale is not launching a ground-breaking story here, they are simply treading a very well-worn and familiar path and stand in grave danger of further deepening the negative stereotypes and anti-Down’s Syndrome biases that are already firmly embedded. It is these entrenched negative perceptions that are behind the c. 90% termination rate for foetuses found to have Down’s Syndrome.
That 90% figure should tell you that, far from being stigmatised, abortion is the accepted norm when it comes to a prenatal diagnosis of Down’s Syndrome. Arc are oddly insistent on telling women that they will be stigmatised and silenced for choosing abortion, but, in my experience of prenatal testing and antenatal care (and that of many other parents of children with Down’s syndrome that I have been in contact with), there is far more stigma attached to choosing to continue with a pregnancy in which Down’s Syndrome has been identified. Prenatal screening technology, which should be a tool used to give women choice, is instead being used to facilitate a state-sponsored detect and destroy mission.
Right at the start of the process, at the booking visit, some women report being told that the screening tests are ‘required’, leaving them with the impression that such testing is mandatory, when it is, in fact, optional. A positive result is delivered in the same manner as a diagnosis of terminal cancer, peppered with phrases such as ‘I’m so sorry’ and ‘It’s bad news, I’m afraid; a worst-case-scenario picture of Down’s Syndrome is presented as an inevitable and certain fact, rather than a list of possibilities not all of which will come true. Swift termination is always the presumed outcome.
The fact that there is a National Pathway of Care in place for women choosing termination, but no such National Pathway for women choosing to continue pregnancy speaks volumes. Some women report that they received an appointment for an abortion that they had never requested, booked automatically and immediately after the news was delivered, without their say-so, when all they wanted to do at that stage was research and consider their options.
The support agency that the NHS refers women to in either case is Antenatal Results and Choices (ARC), and organisation formerly known as Support Around Termination for Abnormality, and who have listed among their corporate partners several companies who provide prenatal screening test kits. Though they claim to support both choices equally, the resources on their website for women wishing to continue are woefully inadequate compared to those for women wishing to terminate. Many of those who have called their helpline looking for sources of support for continuing a pregnancy following a prenatal diagnosis of Down’s Syndrome report that no attempt was made to signpost them to relevant organisations such as the Down’s Syndrome Association. This was my experience: the call handler made no pretence of offering support, instead she used the term ‘life sentence’ to describe what I would experience if I chose to go ahead and bring a child with Down’s into the world.
In the BBC documentary ‘AWorld Without Down’s’ ARC spokesperson Jane Fischer was asked what ARC would say to a parent calling them for support after a diagnosis of Down’s Syndrome. She says (and I quote):
‘We’re not going to say “you’ll be able to cope”. We say: “Well, how worried are you? Do you feel you can continue this pregnancy and deal with that? Can you deal with that level of uncertainty or do you feel the need to end the pregnancy.”’
In other words, the ARC call handler would subtly plant the idea that they wouldn’t be able to cope, and then leap straight to the idea of termination. So much for non-directive care.
Women who decided to continue with the pregnancy regardless report that at every subsequent antenatal appointment they were asked again and again if they if they would like to change their minds and have a termination instead. In health trusts where termination for Down’s Syndrome is allowed up to birth, some mothers relate how they arrived for induction of labour with a bag full of nappies and baby clothes, only to be offered a termination yet again: ‘it’s not too late to deal with it’ they were told. Some were forced to listen to graphic descriptions of the procedures necessary for late-term abortions, even though they had emphatically stated that they intended to continue with the pregnancy. Some of these women are still suffering clinical Post Traumatic Stress Disorder years after their children were born because of the way they were treated.
When care is so directive, is it any wonder that around 90% of people receiving a prenatal diagnosis of Down’s Syndrome choose to terminate in the end?
The idea that termination is the best option doesn’t end when the child is born. Perfect strangers, seeing you with your child in public and striking up a conversation, will think nothing of suddenly asking you; ‘didn’t you have the test? The clear implication being that if you had known before your child was born, you would have terminated the pregnancy.
As I said, the true stigma lies with continuing a pregnancy after prenatal diagnosis, not in ending it. If Emmerdale want to tackle an important untold story surrounding prenatal screening and abortion, if they want to ‘break the silence’ then this is the story that they need to be telling. If they want to break new ground they need to explore why, 25 years after the Disability Discrimination Act first came into force, so many people still think that it is better to abort a disabled baby than allow it to live; they need to explore the attitudes and pressures that would cause a couple like Laurel and Jai, who see their neighbours who have a child with Down’s Syndrome living a full and happy life, and who hear them say that they ‘wouldn’t change a thing’, would still choose to abort a hitherto wanted child on the grounds that it, too, would have Down’s Syndrome.
The Emmerdale production office declared that after speaking to ARC it was heartbroken ‘to hear how many of them [women who had chosen to terminate] felt unable to talk about what they had gone through for fear of being shamed. But multiple studies have shown that the silence is self-imposed, that ‘avoiding disclosing or selectively disclosing the event to others’ is a coping strategy adopted by women choosing termination for medical reasons: a meta-analysis of these studies, entitled ‘The Travesty of Choosing after Positive Prenatal Diagnosis’ was published in the Journal of Obstetric, Gynaecologic, & Neonatal Nursing. Other coping strategies include; denying the personhood of the baby, adopting a stance of moral relativity (‘it was an act of love’), and transferring agency for the choice to others (blaming the disability itself, hence the acute demonization of Down’s Syndrome or other condition when they do tell their story).
Women who have chosen termination are often held to be more objective than those who have a living child with Down’s Syndrome, which may be why the stories of the women who chose to continue struggle to get a hearing; yet the studies mentioned above appear to demonstrate that those who chose abortion are at least as biased, if not more so. But, time and again, they are allowed to shout us down.
When the roll-out of NIPT across the NHS was being planned, stakeholders were invited to contribute to the information pamphlets that would be given out to expectant mothers. Among the stakeholder groups were people with Down’s Syndrome and their families and those who had chosen to terminate following a positive screening test. Information was prepared that all parties agreed was a fair and accurate representation of Down’s Syndrome in the 21st Century. All parties agreed except one, that is – the group who had chosen to terminate said that the information was far too positive and insisted that it must be changed to reflect their more negative outlook. And they got their way. Accuracy was sacrificed in order to appease the feelings of a group of people who had chosen to have no personal experience of Down’s Syndrome, and in all likelihood held a negative bias. But the pro-disability-abortion lobby, and organisations like ARC, have a very loud and powerful voice which few would dare to contradict for fear of being branded anti-feminist, anti-woman, or misogynistic dinosaurs.
Indeed, we are so indoctrinated into the mantra of ‘a woman’s right to choose’ meaning her right to have an abortion, that we are in danger of forgetting what the word ‘choose’ really means, or that it also includes a woman’s right not to have an abortion if she doesn’t want to, even if the circumstances of her pregnancy are considered less than ideal by society. An enforced choice, such as that likely to be produced by directive care and the lack of a recognised national pathway for continuing a pregnancy following a prenatal diagnosis, is no choice at all. We are in danger of allowing the doctrine of ‘women’s choice’ to metamorphose into a means by which women’s choices may be controlled or limited. We lose sight of the fact that in a country like the UK, where abortion is permitted but regulated by law, the circumstances under which women may choose to have an abortion or not to have one are dictated to us by the ableist patriarchy who predominate in our law-making institutions. And ARC are a willing tool of the patriarchy, and the worst kind of misogynists – women who pretend to be fighting for a woman’s right to choose but all the while are working to limit that very same right by bending public attitudes so that a ‘woman’s right to choose’ is corrupted to become ‘a woman’s duty to choose one particular socially-sanctioned option’.
ARC and their corporate partners must have been rubbing their hands with glee when Emmerdale approached them, thinking of all that free subliminal advertising. Which leads me to wonder if perhaps it was ARC who approached Emmerdale to ask them to run a termination storyline to ‘balance’ the positive storyline featuring Leo, the little boy with Down’s Syndrome.
When I emailed the production office I did not demand that they bin the storyline completely, I simply asked them to consider making some changes to it that would reflect the reality of Down’s Syndrome screening and termination, to explore some of the important issues outlined above that no one, most especially ARC, wants to talk about. But it seems that is unlikely to happen – they will toe the ARC party line throughout, and present Down’s Syndrome as a disaster to be avoided at all costs.
If Emmerdale run this storyline unedited, they will be doing a great disservice both to women and to people with Down’s Syndrome. The script will become a tacit endorsement of the discrimination that starts even before birth for people with the condition. When we allow abortion to become the accepted, automatic, default response to a prenatal diagnosis of Down’s Syndrome, then we will see a deepening of the stigma for women choosing to continue, and a deepening of the stigmatisation of people with Down’s Syndrome just for existing. We pave the way for the withdrawal of support, both psychological and material, for these women, and the withdrawal of support for people living with DS, as it will be deemed unnecessary. Ultimately we will see the erosion of their right to life, as the world comes to believe that they should be aborted, and the erosion of a woman’s right to choose, because one of the choices will become untenable.
There are adults with Down’s Syndrome who watch Emmerdale. How would the production office justify this storyline to them? I don’t suppose it ever occurred to them that they would have to. And therein, perhaps, lies the problem.
To those who got this far, thank you very much for reading. I hope I have given you some food for thought to chew over while you watch your favourite soap.

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