It is February 2017. Babs has just won a prize for entrepreneur of the year regarding new technologies behind prenatal screening. Technologies, which have just been accepted by the UK government despite concerns on the impact this will have on the Downs Syndrome community. With the anticipation of increased ‘business’ Babs wants to make sure her counselling room for expectant parents is state of the art. Joseph, a carpenter, is fitting the room out for Babs, while she spends her time in the office dictating letters, worrying about the opposition to the technologies, and that girl Sarah with the sandwiches. There’s something about Joseph that’s deeply unnerving Babs …
[Stage dark. Desk and chair. Door to ‘another room’. Joiners bag, tools, coat on view. Background music plays, Microphones attached, Music fades]
[Man, smart suit, big umbrella stands at edge stage under SPOTLIGHT]
“We all do it don’t we? – carry these things around in case it rains. I mean who wants to get wet? And these days with our satellite images, weather balloons and predictive analytics we have a right to know.
Me – I am that generation – ‘generation rights’. I have my human rights, we all have, and I am grateful to democracy for giving us them.
[Pause looks around sighs, leans to audience]
“However something’s been bugging lately…at the end of October, the 29th, I remember the date because I was waiting for the Livingston v Brechin match to start. See I’m a Brechin City fan, always have been, and I don’t really know Livingston, so leaving nothing to chance, I made off early to get there on time, I was there about an hour early ! Those roundabouts weren’t as bad as all that. Luckily though I had my usual Saturday paper to read before the game.
Now, I always read my paper from the back, sport, letters page, telly, then flick through the news. Everyone does that don’t they? Except maybe for people that don’t like football, like catholic priests? However when I got to the news what caught my eye that day was a small bit about pregnancy screening for Down syndrome.
Whats that got to do with me I hear you ask.
Well there’s a girl at work with Downs syndrome. Sarah. She’s been there a while now. She runs her own business making sandwiches and delivering to all the offices in my building. She is quite a laugh actually. Sometimes she gives you a real cheeky, what are you like, smile when you can’t decide on which sandwich.
[Sarah comes on stage]
Sarah – hi, how are you today ?
Man – fine thanks Sarah, how are you ?
Sarah – I’m great, now what can I get you ?
Man – what do you have ?
Sarah – ham, cheese, Mexican chicken
Man – Ok, Mexican chicken it is, thanks…….
[Sarah exits stage]
Anyway one day at work, after I had bought my sandwich from Sarah, I googled Down’s syndrome and I was quite amazed at what I found, ah mean, the things that people are allowed to achieve now, who have the condition. And I was like see – that’s my “generation rights” for you! Respect for human rights and democracy has improved everyone’s lives.
But then, as I scrolled down a bit further I came across a load of links about some government consultation on pregnancy screening, you know screening for down syndrome, or as some people say ‘screening just to check everything’s OK’. It seems that the government wanted to introduce a new non-invasive test called NIPT which was claimed would ‘cure’ Down’s Syndrome.
Does it need cured ? Well as a read some of the responses this expert Professor Sue Buckley was saying nobody had discussed it with adults with Down’s syndrome. Screening has been around for years, right ? but there has never been a public ethical debate and she was calling for one.
Well I like debate. So I followed the internet chat for a few weeks and I found myself really hoping that Sue would get her debate. 900 people with Down’s syndrome and their families signed a letter to Jeremy Hunt on 21 October 2016 demanding that the government have a proper consultation with the Down syndrome community – a full ethical review before any implementation takes place.
That seems fair enough? surely it’s a democratic right ?
But, just ten minutes before kick off there it was in black and white. Shocker! Just 8 days after giving that letter to Jeremy Hunt, the consultation was stopped and the government announced that they will be going ahead with the new test. I mean this was announced in a Saturday newspaper!! Something to hide perhaps ? They even ADMITTED that by stopping the consultation no assessment was made of the impact that the roll-out will have on the lives of people with Down’s syndrome. People like Sarah, the girl at my work…
I found myself wanting to shout. This is a democracy man!!! Instead the guy beside me shouted ‘ c’mon City’ The game had just started. WE got beat, Livingston 3 Brechin 0
Och we’d know if there was something up, some ulterior motive, people would speak up. Wouldn’t they? And anyway what can I do? Probably support a better football team! I mean c’mon we’d know if there was something wrong…”
“I feel awkward though at work. Sarah is always mucking about, smiling, cheering people up. Sometimes I get this thought in my head – I am standing in a beautiful garden with rows of flowers – different shapes, colours, scent. But then it all changes and all the flowers become all the same, all painted black”
[Spotlight off – Man Exits stage to Rolling Stones “Paint it Black”
played as Enter Babs with briefcase, Dictaphone, opens newspaper.
Babs: “Joseph, Joseph!”
[Joseph comes from room wearing nail bag]
Babs: “Good. You are in on time. There’s a lot to do”
[Joseph stands awkward]
“You know a ‘hello Babs’ wouldn’t go amiss, Joseph. I don’t suppose you have seen today’s papers? Recognise someone?
[Joseph looks but doesn’t engage]
Babs “Yes I have only gone and won entrepreneur of the year at the Biotechnology awards. There are results in life and there are RESULTS!!!
True sometimes you get a lucky break. Like Christmas coming early! October 29 – a Saturday!!! I didn’t think they had the guts. But when there’s a good deal on the table – each prenatal test coming in at around £400 to £900 – and in a climate of fear you can achieve so much. People fall like dominoes really. Threat of being shamed, publicly humiliated if they speak out, financial ruin if they lose their job. Yes people are biddable, shall we say, these days.
It was touch and go for a while whether the government would agree to implement the new screening tests.
There was over 300 medical professionals accusing the Royal College of Obstetricians and Gynecologists of ‘advocating that women with a prenatal diagnosis of Down’s syndrome should end their pregnancy’. What happened was there was all this fuss about the cost of the screening and whether we should have the new tests. So the Royal college just offered a way of well…cutting costs..
The public would not have liked that if it got more widely known and the Down syndrome community put up one hell of a campaign. Even David Cameron, when he was Prime Minister, said we must consider the morals and the ethics of these screening proposals.
To let that continue with more and more people with Down syndrome giving their own story, it was like our argument was being completed ridiculed. Who is going to believe the old chestnut that their lives are miserable if they keep appearing on Facebook like like as if they are well normal.
Their presence was practically unregulated on social media and getting on radio and TV questioned the whole justification for pregnancy screening and abortion. Like that actress Sally Phillips from Bridget Jones diary. She did that documentary “A world without downs?” The BBC aired it. Prime time! You just had to stand supermarket queue long enough and you would hear someone raving about it (spiteful) ” Yeah I watched that ! I can’t believe how much people with downs can achieve these days” We have to keep showing Down syndrome as an illness or we can’t justify passing the screening off as healthcare.
Of course at any time we can churn out the women’s reproductive choice manifesto. But that’s not a mandate for eugenics in democratic Britain. A lot of people, even pro-choicers might stop short at individual choice becoming greater than democratic policies on the undesirability of eugenics.
Undesirability? I ask you. Get with the times. Yeah First for Downs, Up for Anything Else (laughs) – That has been our strategy!
And the sooner the better. The Downs community are getting dangerous. They have developed so much. Take fashion – that bastion of control of people – they are making in roads even there. Some are becoming models, “changing the face of beauty” hell that’s dangerous.
Research clearly shows that people with downs syndrome and their families are well above the average on the happiness stakes. Theirs is an emotional intelligence whereas the world needs rational intellectualism to drive materialism.
Like Sarah. She comes into all the offices and delivers sandwiches. Been doing it for ages. Highly thought of, “a good laugh” (spiteful). Crikey, democracy with its sentimentality and tyranny of equality and diversity. Would make us all broke! I time it though and I am usually out. I order online, she leaves the sandwiches on my table, I pay whoever by direct debit. It’s not that I am avoiding her, it’s just…
Yes their campaign was downright dangerous. People could see people with Down syndrome self advocating. Don’t get me wrong they needed help from others. They could never be cunning enough to do it all themselves.
But we won! I won! There’s going to be a steady stream of sniveling, whining, clients, “I don’t know what to do. I am so confused” they will say …women, men, vulnerable, biddable, just at the start of a pregnancy getting news, bad news, that all is not well. Why continue with the pregnancy… All I am doing is giving information of course.
[Gets up and goes to outside room Joseph is working on]
So that Joseph is why I need this consulting room to be state of the art. And loads of shelves. Lamps, plants, décor magazines, nice smells, soft music and hankies – boxes of them. Because confusion is a bit of a friend of mine. It leaves the door open…
[no response from Joseph]
[Babs stands and holds Joseph’s coat up pinching it with her fingers. Sneering]
Babs: ” Oh this is shabby. I want my consulting room full of soft furnishings, purple, purple everywhere and perfume, scented spices from around the world”
Are you listening Joseph?
“I need this room ready like yesterday. You have been late twice this week. You know you wont get any money if you don’t deliver in time and yet you are contracted to finish it.
Are we really that short of trained workmen that I have to have you.
You are quite fit Joseph. You must work out a lot. I don’t see a wedding ring. Oh don’t worry you are not my type. You are well past your sell by date. And You must be skint if you are doing work at this age. Your clothes are threadbare. That says ‘one of the three D’s to me – Drink, Divorced, Dreamer.
Drink – no I would smell it. Divorce? Unlikely, Awe Do you dream Joseph? I can’t abide men like that. Or women. I like men who never stop talking. They are arrogant! – though you have to throw their egos a nice juicy bone for time to time. And then you know they don’t think, and if they aren’t thinking they certainly won’t be praying.
You are a dreamer Joseph aren’t you? And you can’t hide even if you want to. There’s something about your silence that’s really beginning to irritate me.
You just don’t understand what makes economic sense Joseph.
Everyone wants a perfect baby. And if they don’t, they will when we have finished talking to them. Give them a wee cost analysis. Okay that’s a bit naughty but they will thanks us in the end. The fears spreading, the words out, if you don’t chose termination then you are costing the state. As I said in a climate of fear and economic insecurity you can peddle anything.
Adoption is a no no. There is no money in adoption services.
We worked on the nurses, doctors, – Have made them all so scared of litigation and accountability with no genuine professional responsibility to take pride in anymore. After that it becomes easy to do dehumanizing work.
“We are very sorry… but Your baby is incompatible with life”
We made that up!
Only an inanimate object, with no breath, can be incompatible with life! Of course some were very willing to do this work…
[Picks up Joseph’s coat]
Babs “Where’s your coat, Joseph? – Get it Joseph’s coat!!
[Joseph ignores her]
Babs (angry) Oh how I wish the robots were ready !
You might think you are giving away nothing Joseph…but you speak volumes to me. I remember when the Scots got their parliament. They celebrated the words of the poets …and that Edwin Morgan who wrote “nothing is not giving messages”. He’s right. Even you, silent Joseph, are giving messages – and your shabby clothes.
That is the pickle though – nothing is not giving messages. How to not make these nipt tests say more than we are ready for them to say? I mean how do we conceal the blatant discrimination. These tests reveal an enormous amount of information but we concentrate mainly on downs syndrome, which already has a 90 percent termination rate following a diagnosis of downs syndrome. How do we justify that we shut down all the other information the tests reveal. WE are just not ready for that to be managed yet.
Which reminds me that was what I was meant to do today. Prepare my letter to the Dutch Minister of Health. Now there is a woman who knows about messaging.
[Babs lifts Dictaphone] (spotlight)
Dear Mrs Schippers
First of all I would like to congratulate the Netherlands on its recent announcement to make Non Invasive Prenatal Testing available to all Dutch pregnant women. I am in awe of your vision and tenacity in combating those who linger retrogressively in the way of progress. Your public statement in January was inspirational and I quote that “If freedom of choice results in a situation that nearly no children with Down syndrome are being born, society should accept that”.
It would be so good if you could come to the UK and particularly in Scotland there are certain people I would like you to meet. There are, unbelievably, still people that are nervous about the screening programme.
They need reminders, incentives, that we live in a post Christian society. We are free. Though the state and corporate business must work together to control choice at a meta level. Everyone gets the appearance of choice, they get to feel like they are making a choice. Surely that’s better than the days of draconian religious ideas tying us to the idea of inherent dignity and equal worth!
As in all major advances, we must, however, learn from the past.
I don’t want us to face any legal redress if the new screening tests result in the birth of an undesired child that wasn’t detected or a wanted healthy child was unnecessarily terminated. We will need a plan B for the inaccuracies to avoid the financial consequences that have consumed the National Health Service in wrongful birth cases.
To do this, we must get our messaging right. There is resistance out there and despite our best efforts they are powerful.”
[Babs stops and puts Dictaphone down]
The campaigners worry me. I can’t get them out of my head! If only they knew how we do it, learnt our language, how to use the courts properly again.
We must show that ours is the moral duty! Richard Dawkins was right – we have a moral duty to abort and start again. Soon we will have a gene pool to select the best, detest the rest.
I need a COFFEE! (looks at watch) That Sarah will be coming soon anyway.
[Babs leaves stage. Joseph wanders through and sits at her desk reading the paper she wanted him to remark upon earlier.
WHERE HAVE ALL THE FLOWERS GONE https://youtu.be/L-uSWcF13Js
Sarah comes in with the sandwiches and puts them on the desk. The song plays and we don’t hear their dialogue but they are seen to be friendly, having a laugh and Sarah and Joseph wave goodbye.
Joseph closes paper, throws on floor, gets up, puts on coat and bag over his shoulder and leaves] [Babs returns]
“Joseph, Joseph where are you?”
[Notices the sandwiches, his bag has gone. Angry, rants]
“Well you won’t get paid. Not a penny. Aye you are just a dreamer! Well we’ve been emptying out the universities, the parliaments, the hospitals of your types. If women and men, like you keep walking out, with no consideration of others, how will these rooms get built, how will we get the perfect society eh?
What’s the alternative? Walk on with hope in your heart! Aye right. A God that will bring order out of chaos. I don’t do hope. I make promises and allude to guarantees. We’ve taken the mystery out of midwifery, we’ve medicalised the womb, we’ve put traffic lights in the birth canal and not everyone’s getting the green light.
We control fertility, create problems where there wouldn’t have been any, then we give loans for IVF, soon three parent embryos, we are accountants of the uterus. We’ve consumerised conception with a little bit of deception. And it’s all going down as your choice!
[Goes to room]
Couples, singles are going to file in here after their prenatal test. I will let them settle a while, Go and make them some nice coffee or chamomile tea. Oh yes confusion is my tipple…
“I stand at the door and knock”
[knocks at door to room Joseph been building].
“Is it alright if I come in?, And then we get into some quality control… They Down Syndrome people and their families are the type that would drive hate out with love. Unconditional love and adapting to life on life’s terms is not lucrative”
They are like you Joseph. You believe in some kind of human family when you know perfectly well it is we who create that in our image.
So Joseph you’ve walked away. Well I have a half completed consulting room. How can you forego the money? Where are your principles, your ethics?”
RMEMME (c) 2017 Rachel ME McKenzie