Posts for World Down’s Syndrome Day 2018 #WDSD18

With the hashtag #wouldntchangeathing (see,  I can spell it right in a blog post) taking the internet by storm, I thought I’d put together a post for you with my favourite posts about life, and love, with Down’s syndrome in it. Sometimes I have managed to write something for the 21st March, sometimes not. They might not be the posts with the most hits, but they represent, for me, what I’ve been trying to articulate about life, love, education and Down’s syndrome. Some of them are old, some of them are newer. A fair few of them have an educational slant. Quite a few of them have nothing to do with having a baby, for the simple reason that I become very tired of the link between Down’s syndrome and termination. Life goes on; and it is good.

Enjoy – and I’d love to know which ones are your favourites.

In no particular order (and certainly not a top ten, because I couldn’t decide on just ten) they are:

I never thought it would be me

A cause for love

Down’s syndrome Awareness


Out of the Ordinary


The unknown mother

Hope for the Future

Giving up

The Down’s syndrome memo

In my own words : Sam tells us about the things that are important to him.

What not to say

And for TES : Children with Down’s syndrome are entitled to a mainstream edication – just like everyone else


The Mirror and the Window

One day I am going to write a book. Yes, I know, I know, I’ve already written one; what I mean is that one day I am going to write a work of fiction. I’ve had the idea batting around my mind for a while now. It keeps knocking on the door of my subconscious and this week, after designing a workshop on representations of disability in fiction and why this matters (or critical literacy aka asking awkward questions) I have re-decided that I’m going to write a book with a ‘real’ disabled character in it; one who is, just like S. I read this book, you see. It’s not about disability in a broad fashion; it’s about the narratives of intellectual disability, and how they influence stories more than you might think.

I’m not a literary theorist. I’m not even a critic. I found large parts of the book a difficult read (partly because I didn’t know the stories he used as case studies) and I’ve got a long way to go in understanding how understanding the role of disability in fiction can unlock insights into what we think of ourselves as human, but I made a start.

The obvious immediately sprang to mind. Auggie, star of Wonder, Will, from Me Before You (aka the disability snuff movie), Long John Silver and Richard III (the Shakespeare one). As I continued to read, and to mull it over, I remembered Albus Dumbledore’s sister (and other squibs); even Harry Potter himself could audition for the role. Look:

The Dursleys often spoke about Harry like this, as though he wasn’t there – or rather, as though he was something very nasty that couldn’t understand them, like a slug. JK Rowling, Harry Potter and the Philosopher’s Stone, Bloomsbury, 1997

There are a host of characters and once you start looking,  you notice how writers use animal references to signify disability. Look:

[Lennie] flung himself down and drank […] with long gulps snorting into the water like a horse. J Steinback, Of Mice and Men, 1937

Or make out that they are seriously scary. Look:

Inside the house lived a malevolent phantom […] people said he went out at night when the moon was high and peeped in windows. When people’s azaleas froze in a cold snap, it was because he had breathed on them. Harper Lee, To Kill a Mockingbird, 1960


In the midst of them, the blackest and largest in that dark setting, reclined James Hook, or, as he wrote himself, Jas. Hook, of whom it is said he was the only man that the Sea-Cook feared. He lay at his ease in rough chariot drawn and propelled by his men, and instead of a right hand he had an iron hook which ever and anon he encouraged them to increase their pace. J.M. Barrie, Peter Pan and Wendy, 1911

It’s all a bit depressing.

On the other hand, some disabled characters are really quite saintly. Look:

He lived with his mother on the farm. Never was there […] a creature more popular with the young or old, a blither or more happy soul than Barnaby. C. Dickens, Barnaby Rudge,1841

Or you might want to use Tiny Tim as an illustration instead, or Beth from Little Women. Or even, as the ultimate in ‘positive about being different’: Elmer. Look:

It was Elmer who kept the elephants happy. Sometimes he joked with the other elephants. Sometimes they joked with him. But if there was even a smile, it was usually Elmer who started it. D McKee, Elmer, 1989

Mind you, you wouldn’t want to use Colin from The Secret Garden as an illustration of the saintly. If ever there’s a character who was a pain in the ass, it’s Colin. But look:

So long as Colin shut himself up in his room and thought only of his fears and weakness …he was a hysterical half-crazy little hypochondriac who knew nothing of the sunshine and the spring and also did not know that he could get well and could stand upon his feet if he tried to do it. When new beautiful thoughts began to push out the old hideous ones…strength poured into him like a flood. Frances Hodgeson Burnett, The Secret Garden, 1911

Seeing as I know and love someone who is disabled, and he is neither a demon or an angel, someone or something that has to be explained or cured with a dose of positive thinking and fresh air, he doesn’t exist to highlight how lucky we who are not intellectually disabled are and he most certainly is fully human, it all starts to feel a bit problematic. Given that most people don’t know and love someone disabled (or they think they don’t anyway) and how children, just like adults, use books to help them make sense of the world, it struck me that we might like to start asking some of those awkward questions and encourage children to do the same.

And this is why;

“the interpretive stakes are always high when the subject is intellectual disability, because the stakes are ultimately about who is and who is not determined to be ‘fully human,’ and what is to be done with those who (purportedly) fail to meet the prevailing performance criteria.” Michael Berube, The Secret Life of Stories, 2016

And this is why:

And this is why:

“We read to know we are not alone” C.S. Lewis

The stories we read and tell are both a mirror and a window.




Read a book review of Wonder here.

You can find a useful booklist with ideas for primary aged children here.


An Angel in Disguise

Some years ago, I did a stint in direct sales. It was around the time when I was starting to want to do a bit more with myself than shuttle between the school gates, nursery and playgroup. I’d been running a parent and toddler music group for some years, but had come to the point where I knew that I would have to expend considerable amounts of time and effort (and money) in order to keep it going, and I was ready to do something different. I was surprised at how good I was at it (selling things is not so different to teaching, to be fair, so I shouldn’t have been); for a little while, when I realised I had had enough of going out in the evening to work, I wondered whether I should pursue a more conventional job in sales.

I didn’t think about it for too long though. When it came down to it, I knew that one of the reasons the sales job was beginning to pall was not just the timetable, but the fact that I couldn’t bring myself to care about what I was selling. Yes, they were great products, but in the end…it was all a bit empty.

Motivation is a funny thing. For me, it was, and still is, the idea of making a difference that got me into education. That, and not being bored. I don’t do boredom very well.  Being only really interested in my own decisions, back when I was deciding what to do with my life, I never really considered anyone else; today though, after some years at this adulting thing, I’ve come to realise that, as in the cat-skinning business, there is more than one reason why people do the work they do.

Creativity. Many people want to be creative in the job they have. Or autonomy. Lots of people want to be in charge of themselves. Simplicity. Some people want to do a job that simplifies their life; they can fit it round the kids, or it’s the sort of thing that doesn’t take too much effort. Some people like chaos, others, order.

Then there are issues around how you are perceived by the outside. Some people like to be admired, because of the car they drive. Others, because of the physical strength they must exert in order to carry out their role. Still others, by the congratulatory things that people say to them, aren’t they wonderful for being able to do that. Some like the limelight, however that reaches them, others prefer to be backstage.

I was reminded of this the other night. I was at the TES Independent Schools Awards ceremony. As the TES SEND columnist and one of the judges, I was giving the award for Special Educational Needs Initiative of the Year (and a very good initiative it is, too). As I waited nervously for my turn to speak (I was reading out the name, hidden inside the gold envelope) (the nerves are something to do with being on show, having my photograph taken – I’ll have to write about that at some point), I was treated to a very good reminder of that fact.

It seems that teachers of SEN are somehow tarred with the angelic brush, just like the mothers of disabled children, who must sacrifice so much for their offspring. Leaving aside the role that the disabled child must necessarily play in this image making,  I was disturbed, enough that instead of simply reading out the name of the school, I took a moment to remind the assembled throng, in my best teacher tones, that EVERY teacher is a teacher of special educational needs. It’s not an aspiration, cockle warming call to action, it really isn’t; it’s a statement of fact. It’s there in the law. The vast majority of children with SEND are in mainstream schools too.

But it’s not just that. It’s how the notion of charity, of how working for a charity, such as the charity at the centre of the latest learning disability home scandal, or working in the field of SEND in general, somehow automatically means that you are a good person. The abuse and cruelty that hides behind closed doors, or the indifference that causes young adults to lose their lives prematurely, is hidden, glossed over by a false public perception of what you don’t do.

Now, I don’t know about you, but I’ve come across one or two people in my time who have inadvertently shown themselves to be the opposite of who they pretend to be. I’ve come to recognise them for all of the things that they accuse me – or S – of. (Click the link to find out about that.) Liar. Unreasonable. Demanding. Malicious, selfish rule breaker. Incompetent. Dangerous. In a sad kind of way, it reminds me of the constant rhetoric of inclusion in schools; rhetoric that covers up the reality of a failure to do our jobs properly. Yes, people respond to the systems and management they find themselves working in, but, when it comes down to it, if we can’t accept that systems reflect the people who make them, then how will we ever change anything for the better?

But I’ll tell you the thing that makes me really cross, the thing that disappoints me, such that I can feel the bitterness rise up and taste it on my tongue; it’s that if these people, these ‘do gooders’, these angels, spent as much time and energy actually doing their job as much as they do protecting their reputations or producing pretty paperwork that shows how hard they are working, and you can look at schools as workplaces just as much as you can look at the work of charities, or homes for disabled people, then those we are actually supposed to be working for, the people whose lives we are supposed to be changing for the better, wouldn’t be so tragically let down.

I know we’re all trying our best. I know we get things wrong – I do as much as anyone else. The thing is, though, is it’s not supposed to be about us and our reputations. It’s supposed to be about them.

Girls Just Wanna Have Fun

When I was about 19, I went out for a night of karaoke with friends at a local nightclub. Although I’ve done a lot of singing in public in my time, karaoke was new to me, but, ever the performer (I hesitate to write ‘show off’ – I really do try not to get too up myself), I chose a song from the catalogue and signed up to the list without a second thought (I’ve always been a bit overconfident on the singing side of things, comes from my early childhood experiences when I was constantly being called upon to Do The Singing bit in school shows, church and amateur dramatics). For my turn, I chose Cyndi Lauper’s ‘Girls Just Wanna Have Fun’ and, I remember, I sang it to much applause (afterwards, when I went to the loo, I was accosted by another young lady who, rather aggressively I thought, asked me if I was the one who had been singing earlier; when I rather nervously admitted it was me, she told me I had been fookin’ ace – I’m taking that as rapturous). I remembered the experience when I was out in the car earlier today and it came on the radio (an expedition into the cold and rain in search of Forgotten Items From the Supermarket). It made me smile.

My friends and I, when we were at College (we were 17 and we thought we were the bees knees) used to request this song regularly when we went out to discos (a regular occurrence); we’d jump on to the dance floor in our Doctor Martens and bellow the words to each other, bouncing with the joy of being young and brave and having the world at our feet. We’d sing the lines ‘Some guys take a beautiful girl/and hide her away from the rest of the world/ I wanna be the one to walk in the sun/ cos girls just wanna have fun’ and vow that we would never put up with the sort of nonsense from our chosen partners that would have us stuck in the house being subservient. We were feisty, and determined.

As I drove along the slick streets, brown with the slightly thickened ending to raindrops, I turned the volume up and sang along, happy to be diverted down memory lane for as long as it lasted (I had taken the precaution of writing myself an actual list before I set off from the house, I thought I would be safe), remembering the days when I was younger and thinner and much, much fuller of energy. The younger me isn’t so different to the older me I thought; I’m still determined never to be shut away, an adjunct or an add on to someone else. It’s just that back then, I thought it was personal. I thought it came down to the person you chose as your life partner.

Now, though, I know different. I can see that this shutting away, this turning of a woman into some sort of silent trophy, or idealised image of supportive womanhood, or motherhood, or whatever else it is that women are supposed to represent or do, is not so much, not in my life anyway, personal and private, as systemic.

R thought I was going on a bit, but when he found that he was the one who had to curtail his working day in order to meet the kids from school and damage his career prospects (and I don’t mean extras, school events such as assemblies or school shows or sports days or anything like that).  Not that schools are in any way the same as places of child care, but dropping everything at half-past two in order to make it to the school gates for three does kind of cut in to your day. And, when you add in the magnifying effect of caring for a disabled young person – right at the point when you’d think things would be getting easier in the school run department you find out that it is actually worse, what with the even shorter educating day at college and the difficulties in finding the sort of care support you actually need; not for S the wander round the shops with friends that I used to do, while I was waiting for the bus. Holding down a part-time job, or even working at all, becomes increasingly challenging the longer I am in this game, and I haven’t even begun to write about health or social care. I’m lucky to be able to work the way that I do; I don’t for one minute think that my working arrangements are the norm. Employers pay you to do a job, and if you aren’t there, because you have to share the caring load, they will look for someone else who can. Part-time leaders? I’ll believe it when I see it.

I don’t know about you, but today, as I consider the opportunities I might have had, the chances I’ve missed to make a wider contribution, to effect a bigger, direct change in my chosen field of education, Cyndi Lauper, and her bouncy, buoyant, rebellious song doesn’t really do it for me any more. Yes, the personal is political, but now, it’s more. It’s bigger than me and my choices. Now, today, I might have a reminiscent singalong in the car, and smile at my youthful innocence, but tonight, when I do the washing up, next week, when I sit on the train, hurtling though the early morning chill to London, now, when I sit here, editing this post and considering what it is I am trying, so clumsily, to say, I will be, I am, choosing a different song. In so many ways, I’ll be singing, ‘what about us?’



Demand, Support, Control

I have to admit that it was with a supressed sense of reluctance that I set off for the third Research SEND conference on Saturday morning. It was drizzling. It was cold. The hubs was stripping wallpaper and the kids were full of snot. It was one of those times when I had to force myself out of the house, mindful that I had said that I would contribute and safe in the knowledge that, joy of joys, it was only half an hour away.

Of course, I was late. Of course, when I got there the hillside upon which the campus was built was cold, windswept and deserted. I found the café (eventually), but of course, there was no one there to ask. When I finally found the lecture theatre, the keynote was just finishing. Everyone was very interested in what was said – but I have to admit that I was more relieved that I had made my way in without drawing too much attention to myself by falling over the chairs with a clatter and a stage whispered ‘sorry, sorry’.

I thought, after I’d managed to miss the keynotes so spectacularly, that I’d better get into the swing of things, so, with a focus on mental health as the theme of the day, I went to see what the boss had to say about staff wellbeing at work.

I don’t suppose that I am unusual in having had a difficult time at work, at one point or another, over the years. I’ve never endured a toxic workplace for very long, but they have certainly touched my life, and I was taken aback to find, instead of hints and tips on how to balance your work life with your home life and not lose yourself somewhere in the middle of it all, an almost perfect description of workplace bullying. (Demand, support, control model, Karasek, 1979.)

I read an article in TES the other week, and I had a similar reaction; I knew that I had been bullied at work before, but I could never quite put my finger on it. How were these people making me feel so bad? And why was I so powerless? It was strange to see it represented so well in diagrammatic form.

You see, place someone in a circumstance where they have high demands placed on them (particular groups to teach, perhaps), give them no support at all (they always behave for me OR ‘I’m going to come and give you some support) and take away any control that they thought they had (curriculum, timetabling, environment for teaching, scripts) and there you have it. It was almost enough to make me wonder whether it wasn’t the ‘how to get someone to leave’ part of the leadership course. It’s supposed to be about how to keep your staff, but as I started to get cross, I started to wonder whether or not we have the toxic version of the model at play across the entire education system.

You see, I spent part of this afternoon looking through the latest in the rash of consultations from the DfE and thinking about improving life for teachers, ensuring that members of the profession stay, thus keeping their expertise in the system and saving the nation shed loads of money in sick pay and training costs and I thought to myself, I wonder if they know? I wonder if they know what giving teachers some control would do towards solving the retention crisis? I wonder if they know how teachers would feel about being supported rather than constantly criticised? I wonder, if they reduced their demands, just a little bit, what the effect would be? Would we stay? Or would we go?

You can find the first post I wrote about the way that teachers are treated by the DfE here:

Because, mark my words, it is impossible to work your way out of a toxic workplace. If someone has you in their sights, there is nothing you can do, in terms of your own performance, to make the situation better. Nine times out of ten, the only solution, the only thing you can do, to give yourself back the control, support you need and reduce the demands you feel, is leave.