Monthly Archives: September 2016

The Body Politic

If it weren’t for the pressure I feel under to be thin, I could almost believe that my body was my own.  I sit, every morning, eyeing my breakfast and telling myself I ought to eat less, be less; every morsel that passes my lips laced with an added helping of guilt.

I never used to worry about being thin.  I never even used to think about it.  All those women, publicly plastered over the pages of magazines, paraded on the telly and in films, naked in newspapers; they had nothing to do with me.  I was young, and strong(ish).  My body was a sign of my power.  It was mine, and I wasn’t reducing it for anyone.

I remember the moment when I understood that it didn’t really belong to me at all.  I was sitting in a blandly lightish-beige office, chatting to a doctor, an obstetrician.  She was older than me, but not by much, and she was dandling Sam upon her knee.  I’d been asked to go in to talk about…something, I’m not quite sure what.  I thought it was probably to do with the mechanics of giving birth, but it wasn’t.  It was about Sam.  There she sat, cuddling my baby, who sat, in turn, clutching at his toes in the way that babies do, and she looked at me straight and this is what she said.

“If I found out that I was carrying a baby with Down’s, I’d have a termination.”

And like that, I knew.

I should have known it before, really.  I should have twigged the moment someone took a machine and looked inside me (and told me to go away and get rid of HALF of the pint of water I had dutifully consumed – HALF!) to see what was going on with my baby.  I should have realised when I stuck the picture, grainy and black and white, to the classroom door.

It didn’t occur to me the first time that someone patted my pregnant bump (I didn’t have to explain back then that it was a food baby), or held shop doors open as I waddled along, or gave up their seat for me on the bus.  It should have struck me more forcibly when I sat with friends and we regaled each other with tales from the delivery room; we cried with laughter over the pop-eyed question as to whether anyone else would care to take a look, or even better, have a root around in there, but it didn’t.  Maybe it was the slight hysteria brought on by a lack of sleep.

Whatever it was, I didn’t realise that my body was no longer a private thing, and that what I did with it was a matter for public debate until that moment.  If I was a responsible person, I would get myself checked, I would allow not only scans, but needles, to enter; a physical consequence of a not-so-hidden judgement.

But this thing, this thing about Down’s syndrome I take particularly hard, because it’s not about clothes or hair or breast or bottle or even whether you are having a baby at all.  It isn’t about buggy choice and what-that-says-about-you, or where you let your baby sleep or who sets the routine – or not.  It’s not even something that affects only older mothers, the geriatric ones, because, you know, risk.

It’s about the way that women’s bodies are continuously policed, and that what is dressed up as choice is really about control.


There’s a TV programme coming up next week, and I have written this post as a way of working out my thoughts before it airs.  I appreciate it is a difficult subject – and one that affects us all.


Spaghetti bolognese and a glass of milk, please

It’s funny how, three weeks into September, the summer seems like an age away.  It is just getting light when I wake up in the morning, chilly when L and I walk up the road, hand in hand, to school.  I look at my legs, now that I have pretty much made the transition to long trousers, and wonder if all that fake-tanning is worth it.  The freedom we had to set our own timetable is gone, and now we are slaves to the school bell and the alarm clock.

This summer has been one of new experiences.  We have tried out new things, visited new places, and Sam (and the others) has taken it in his stride.  It’s strange how Sam, my creature of routine, my dresser-in-uniform-on Boxing-Day, has thrown himself into the unknown with gusto – and with remarkably little recourse to teenaged moaning.

Sometimes, you think, when you have a baby with a disability, that you will never be able to do anything ever again.  It is your life that is over, given up and sacrificed on the altar of care.  There will be no more dreaming of the future, making plans and especially no more holidays.  Travel, far from it broadening the mind, becomes something so far out of reach that it may as well be a mirage.  The far away only lives on the television, or the internet.

Mind you, that said, we haven’t travelled much mostly because of the cost.  Once we had three children, camping became the thing-we-did for a good few years (until the backs-of-the-parents became too fragile to bear it with good grace any longer).  Hotels don’t really cater for families of five, we have to book two rooms, add in the cost of travel and the whole thing starts looking like you need to get out a mortgage to go fifty miles down the road.

This year, however, Things Changed.  For one reason or another, we found ourselves in possession of the means-to-buy-tickets and some time, and, what had been something that I had vaguely wondered about in a wouldn’t-it-be-nice-to-do-that-one-day sort of way became a plan.  And then it became something that, miracle of miracles, actually happened.

We went, all five of us, to Amsterdam.  We left the car at home and we went all the way there on the train, had a look round the city, and flew back again.  Nobody got lost, nobody was sick or hurt themselves, there were no dramas and only slight boredom was evident by the begging of them all to let them leave the Rejksmuseum.  Nobody sat down on the floor, demanding to go home.  It was all rather successful, and I am still pinching myself that we did it (and secretly planning another adventure – I thought Venice?) and my confidence both in myself as a capable adult and my family as people who know how to behave in a new situation and are interested in the world around them has risen as a result.

You might think, given that we were travelling with a young man with a disability, that we would go into an awful lot of forward planning.  You might think that we had charts and pictures and took time to explain what was going to happen with a symbolled up social story, route maps and timetables, but we did none of those things.  I didn’t even buy a guide book and show it to them before we went.

What we did do was chat about it at the tea table.  We talked about which train stations we were going to go to and what the money would be like.  We laughed at R’s Dutch lessons via smart phone, and wondered aloud what the food was going to be.  Nothing formal; nothing other than family chit chat over a friendly meal.

Sometimes, when he is quietly eating, and the other two are dominating the conversation with fast flowing chatter over the finer points of playtime or Pokemon, you could be forgiven for thinking that whatever it is we are talking about has flown over Sam’s head.  It’s so easy, when someone is quiet, or quiet because it is part of their disability, to talk about them as if they aren’t there.  To imagine that he isn’t listening, because he isn’t looking at me, or joining in the conversation that he isn’t taking part.

It’s so easy for waiting staff to ask us what he wants for his dinner – and such a pleasure when he reads the menu and they find, despite the fact he speaks no Dutch, that he read it, and he knew what it meant and that, actually, he would like the spaghetti bolognese and a glass of milk, please.






Apples and Pears and the Education Select Committee

img_4696There is a disused railway track that runs near the back of my house.  As luck would have it, it runs pretty much from here, near the centre of town, to the schools my older children attend (back in the 70s, some forward-thinking town planner put three schools on the same area of land; one primary, one secondary comprehensive and one special school).  It’s almost as if there was a joined-up transport plan, back in the day.  In fact, I’ve never seen such large bicycle sheds in a school, such is the popularity of the bike, and the safe route to school around here.

If you didn’t know it was The Lines, you could be forgiven for thinking that you were, in fact cycling down a country lane.  The hedgerows grow high, masking the urban landscape behind them, shielding the houses and gardens from the interested gaze of the passer by.  Ordinarily, you wouldn’t notice the kinds of trees and bushes that grow in such mixed up profusion by the side of the path.  Most of the time it is simply a bank of green, with the odd nettle thrown in, just to keep you away from the edge.

But every year, around the middle of September, the character changes.  Instead of green, the foliage betrays flashes of colour.  Instead of the flat, two-dimensional nature of the leaves, there is the round fatness of fruit.

People gather, tempted by the purple succulence of blackberries, hoping for jam or crumble; rosehips glow, scarlet and out of reach, high up in the tangle of brambles.  But the one tree that fascinates me as I pass by, on my way to deliver or fetch Sam from his special school, is the one that stands behind, hidden so that to see it you really have to look, and whose harvest of pears lies, crushed and slowly rotting, untouched on the path below.

Whether or not the people of my town have no liking for pears I really couldn’t say.  Perhaps this is a centre for blackberry and apple crumble as opposed to tarte tatin.  Whatever it is, the pears lie, unwanted, upon the ground, fallen from their parent tree, their birthed perfection blemished by their tumble, turning from sweetness through the unmistakable aroma of heady wine, to the acid disappointment of vinegar.

I thought about those abandoned pears when I listened to Justine Greening, the new education secretary, giving evidence at the Education Select Committee this week.  I thought about how everyone rushes to the blackberries, and leaves the pears behind, all their luscious promise coming to nothing, rotting on the ground.  I thought about those pears, and I thought about children with SEND and I thought about this idea we bat around that all children deserve a decent education.

I thought about the narrative of social and economic disadvantage and I thought about the close connection between poverty and disability, and I wondered why, like the pears, SEND wasn’t on the table.

A Grammar School in Every Town

Grammar schools.  Parents seem overwhelmingly in favour (until their children don’t get in one, anyway), so last night, when I couldn’t sleep, I wondered why.  I wondered what it means, this desire – what it is about the idea of a grammar school, something that most of us have never experienced, that holds such power over the public imagination.

I don’t think it means what we think it means.  Instead, I think:

It means equal chances and opportunities, a true meritocracy.

It means choice.

It means excellence.

It means hope for a brighter future.

It means quiet and orderly place of learning.

It means libraries where children study and read.

It means well maintained Harry Potter style buildings.

It means distinctive uniforms.

It means pride in your children.

It means a smaller school.

It means your children don’t have to go to school with those children.

It means that your child isn’t one of those children.

Who wouldn’t want their child to go to a school like that? Who wouldn’t want their child to go to a school where they might find someone like them, someone to be a friend with, regardless of how quirky, or different from the majority they are – and for that to be celebrated, for that to be more than OK?

Who wouldn’t want those things for their children?  Who wouldn’t want the best for them – or what we think is the best, or what we are told is the best?  Who wouldn’t want to be reassured that their child is, in fact, the best?

After all, grammar schools are places where the ‘best’ are ‘creamed off’.

Don’t send him in Tomorrow – a Review

I do like to read. I always have.  When I was a little girl, even before I hit the teenage years, it was difficult to drag me out of bed in the morning – because I had been up late at night, reading.  My mum used to call up the stairs, to remind me to put out the light, and I, without taking my eyes off the page, would agree, when I reached the end of the chapter; only to find myself sucked into the story vortex, coming to when I heard them coming up the stairs.

You could always tell which one of my parents it was.  My dad has this kind of springy-boingy-ness about him.  He could bound up them, two at a time, although he tended not to when he came to give me coffee-and-ginger-nut-flavoured goodnight kisses.  My mum was, not slower, but softer.  When they trod together, that was the time I knew that the light really had to be off.

In my innocence, I thought that it was the sound of the switch that would give me away, so I perfected the art of turning out the light in complete silence.  I would lie there, feigning sleep, while they made their bedtime checks of my sister (next door) and I, slowing my breathing to what I thought must be a sleeping rhythm.  It took me years to realise that they must have known all along, being as light is the sort of thing that can be seen in the darkness.  They never said, and neither did I.

Now, call me shallow, but I like a good story.  I like a page turner, and I like a happy, or if not happy, a satisfying ending.  I like the mystery to be solved, the hero and heroine united, loose ends tied up – and even better, the possibility of a sequel.  That feeling when you are positively sad that the story that has kept you so enthralled is ended is most likely the reason I like series fiction so much.

There aren’t many volumes of non-fiction on my bookshelves.  Actually, I tell a lie.  My bookshelves are an interesting and eclectic mix of my books (stories) and his books (how-to-do-things).  My dad occasionally attempts to remedy the situation by buying me a biography of somebody worthy he thinks I ought to be interested in or a book of local history from the valley where I grew up, but I have to admit, non-fiction is not really where my heart lies.

When I read I like to be transported.  I like to escape the humdrum existence of the every day.  If it’s a bad day, especially so.  So, I have to admit, I picked up my review copy of Jarlath’s book, Don’t Send Him in Tomorrow, with trepidation.

I’ve met Jarlath before.  I’ve heard him speak, and discussed the subject with him.  I was pretty sure I knew what would be in it – and I was right.  What he has written is a pretty unvarnished account of education – and the adult destinations – of young people with special educational needs and disabilities; people like Sam.

It’s not what I would call a comfortable read.  Certainly not for a parent, or even a teacher, like me.  We all want to believe the best for our children.  We want to think that other people will see them the way that we do, when they leave us.

But the truth is that other people don’t.  The truth is that the future remains an uncertain and frightening place for parents like me of boys like mine.  And I would be an awful lot more comfortable with it, if other people understood.

If you’re a parent, this book is an uncomfortable read.  It’s hard to live your life with fear.  If you’re a teacher, and especially if you are a headteacher or in a position of educational influence, you should read this book.

Everyone who has an interest in education, particularly school leaders and policy makers, should read this book – because a good education, one that fits young people out for adult life, belongs to all over our children, not just the 80%.

And then, when you know why working with young people with SEND is important you can go and buy my book and I’ll tell you how. 😉 (sorry, couldn’t resist)