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It’s been a long time since I read Orwell’s 1984.  My friend Allie, who used to have room 101 at college, had a quote from it photocopied and stuck to her door (I had a Jacky Fleming one and a the obligatory sheet of paper for my friends to leave the obligatory ‘I came to see you and you were out’ message on) and, at the time, I smiled, but I didn’t really know what she was talking about.  I had had Animal Farm read to me as a class story when I was in Year 6, but that was about as far as my knowledge of Orwell went at the time.  I was more of a Jane Austen kind of girl.

I did read it though, a while after I met her, accompanied by its feminist partner, The Handmaid’s Tale, one rainy summer when I had a job selling ice-creams (there wasn’t much to do), chuckling to myself at the snatched memory of my parents, in the real 1984, saying that they never thought they would ever reach the year, that now that they were 41 it didn’t seem so old.  When I read it (them), the dystopian image of a life controlled by Big Brother (which wasn’t a TV show), or by your membership of the female sex, it seemed to me to describe a fantastical world; an impossibility.  I was young.

Today, though, it is doublespeak, rather than Big Brother or Room 101, that I find most striking. The news is no longer the news (it is fake). The truth is no longer the truth (it’s not even relative). Social mobility doesn’t mean to be socially mobile (as personified by that much derided character, Hyacinth Bouquet/Bucket), but to be a certain kind of poor (the deserving). And, of most interest to me; inclusion doesn’t mean inclusion, quite the opposite in fact.

I can see why people want to use the term. It makes us feel nice, especially when we apply it to ourselves, or stick it up on a sign or a flyer, illustrated by smiling, cartoon children.  We are morally in the right, in a right on kind of way.  It is not quite the opposite of exclusive, which somehow means special and desirable, an honour bestowed upon the few (like advance notice of a discount or a new season, something that pops into your inbox, glistening with the temptation to part from your hard-earned cash and be the first from the starting blocks in the fashion stakes), a strange sort of justification of yourself as a shopper, or a parent. Instead, to be inclusive speaks to us of welcome.  There are no bouncers here, checking that you are on The List.

And, of course, inclusion is intertwined with notions of disability. To run an inclusive activity, or to be an inclusive school or church, it means that you welcome (or you say you do) disabled children and young people and their families, whether they are in a wheelchair or not; everyone, in fact.

Except, somehow, it doesn’t.  Somehow, an inclusive activity has come to mean one for disabled people (but only if you are the right kind).  An inclusive school is the one where all the disabled children go. An inclusion unit, a space within a mainstream school, has become the place where you send someone (those pesky disabled kids, the undeserving ones who have slippery labels they just won’t obey), not to keep them in, but to get them out.

We say all the right things, but somehow, it feels empty. It all feels a bit too much like doublespeak to me.


In my own words : Sam #WDSD17

Reproduced with permission for World Down’s syndrome Day.

Where I live : T

Who I live with : mum and daddy my sister L and brother A.

What enjoy : playing with cars and going to grandma’s house. I like going shopping and watching tv and dvds and going to the park.  I love to play with my Eddie Stobart and listen to music and read.

What am I good at : I am good.

These are some of the photos Sam has taken with my old phone.  We hope you like them

Free Knitting

My mum is the sort of woman who is always learning. From a post-graduate diploma in theology to typing, to Shakespeare’s Women or Jane Austen’s Men; she always has something on the go.  The latest was Free Knitting. She went away for a couple of nights in half term, ready to be inspired by learning something new into a creative outburst. She is currently, when she isn’t off swimming or volunteering at a charity cafe or visiting family and/or friends, to be found under a pile of yarn in varying states of fluff, knitted into triangles she tells me she will turn into a bag, or a cushion cover, or something.

Now, I can knit (although I find it difficult to maintain the level of concentration you need to achieve success over the long term); I quite like the feeling of warmth that steals over you as the fabric grows into something you hope will be shapely and usable. But I have no desire to immerse myself in handicrafts. One reasonably successful knitted nativity, and I feel I have paid my dues to yarn.

But she has given me an idea. It’s something I have been mulling over for a while, a return to telling stories. Not the stories of the reality of life as it happens to me and my family, stories of Sam, but fiction.

I’ve been turning the idea over in my mind, that of creating a character with Down’s syndrome, someone in a story who doesn’t exists merely as a plot device, but who has real agency; a character without whom the story wouldn’t happen. The point at which the world turns.

I might know how the story will start, but I have no idea how it will end, or the journey it will take in between the two.  Usually, when I write, I have it all planned out. I know the who and the why and the when, what brings them together and what drives them apart. Usually, I have at least an idea of where I am going and what I hope to achieve.

This time it’s different. This time I intend to free myself from conventional confines and find out if, instead of forcing out a narrative, a puppeteer playing a particular tune, the story is hiding inside, asking me to take the time to find it, to piece together the triangles, as it were, and form them into something new.

So I’ve started a new blog. I don’t know how often the posts will come, only that they, slightly scarily, will.

Review of the Year

2016 has been a bit of a year, hasn’t it?  Both on the public stage and for me privately, it has been a year of ups and downs, most of which have not made it onto the pages of this blog.  Things You Don’t Say could have been the title, but then I might have hoodwinked myself into writing them down, so a more mundane, run-of-the-mill title it will have to be.

So, looking back to last year, what did I hope for?

  1. and 2. Meeting up with the Tweeps.  Well, that was a success.  I can’t say that running my own show was a particularly pleasant experience, or one that I especially want to repeat, but meeting so many of my online friends has been a joy.  Hopefully, I will be able to meet you all again this coming year – you never know.  Give me plenty of notice and I’ll see what I can do.
  2. I hoped for health and it sort of happened.  This year, just for a change, I haven’t worried so much about Sam as about my daughter, who has given me more than a few sleepless nights.  We’re still here.  That’s the main thing.
  3. Hmm. The least said about that the better.  I have a couple of new pairs of trainers and that’s about it.  I’m blaming my new job and my new routine that I haven’t quite got used to.
  4. I love it.  R tells me that I bash the keys of my computer with such force that I am in danger of giving myself an RSI, but there we are.  My book came out in May (I was too shy to organise myself a Launch Party, I can’t bear the social anxiety) and TES published another cover feature, this time about the role of the SENCO, which I hope will be another little contribution to change for the better.

And next year?

  1. My doctor says that we are a memorable family.  Looking after us takes a fair amount of adult effort, and, well, a lot of that effort is mine.  Keeping everyone on an even keel as we set out on a year with big changes on the horizon is a low key hope.
  2. Drink less Diet Coke. I have started to become paranoid about my teeth and my bones.  I need to look after me, and that means being sensible, doesn’t it?
  3. Read and learn. I had to give up on studying.  I didn’t want to, but one thing and another conspired to make it just one more thing that I couldn’t do – but there no reason why I can’t read books, is there?  After all, membership of a university library was the bit I most enjoyed the most.  I have a stack of books waiting my attention, and, if I say that I will review them for work, I will force myself to actually read them, won’t I?
  4. I enjoy social media, but towards the end of this year it hasn’t been the easiest of places for me.  I don’t feel silenced so much as bruised.  Less time tweeting and more time spent with real people has got to be a good thing.
  5. Professional hopes. For a long time I haven’t had any of these.  Having three kids, one of whom is disabled, makes pretentions to career ambitions the sort of thing that belong to other people.  But my book came out in May.  You never know, one day I might write another one.  I write for Teach Primary, I have a  bi-monthly column in TES that keeps me on my toes, and Driver Youth Trust gave me a job in September. I have given keynote speeches and delivered training.  After four years of finding myself small, forgotten, squeezed in places to teach deeply underprivileged SEND children, I am actually starting to believe that I might have a bigger contribution to make, and I might actually be able to do it, as well as fulfilling my responsibilities at home.  My heart still belongs to Down’s syndrome, and I will always find myself writing about it, and what it means to me, but I hope I can, as I have always done as a teacher, make a difference to more children than my own, to make the future a place for which it is possible to dream.  I still struggle to believe in myself.  It will take me a while to get over a long-lasting negative experience.  I feel privileged to be working with people who not only seem to believe in me, but are kind.



Year’s Mind

I’ve been thinking of this post for a while, and, as the holidays are here, and, for the first time in a very long time, I haven’t got much else to do (well, I have, but I am womanfully ignoring it for the sake of my sanity) so here it is.
The five songs of my youth that influenced me more than I thought at the time.  And now I feel terribly old and terribly young at the same time, which is confusing.