Selection and Choice

One of the things you get used to, when one of your children has Down’s syndrome, is being asked a lot of questions.  They can be anything from the sort that come from officials and questionnaires about his ‘needs’ (like, how am I supposed to know when it is a new situation and I’m not there?) to the most common of all, accompanied by the sympathetic head-tilt and sing-song intonation of, ‘did you know?’

The did you know question became so ubiquitous when Sam was younger, a soundbite comment on the public nature of motherhood, that I became sorely tempted, in the faintly hectic way of the sleep deprived, to answer through dramatically bared teeth, ‘No, I ordered him from the baby shop especially because I fancied a more complicated and difficult life, thanks for asking.’  I never did, but my friend Meg and I used to laugh about it.  We’d decided that laughing at the world and its judgements and opinions was a better option than the alternative, which was to drown in a sea of self-blame and fear for the future. So laugh we did, imagining all the shocked faces at our reply.

The thing that always gets to me though, the poisoned dart hidden deep within that question, is the underlying assumption of choice.  We like to think, in our 21^st Century Western way, that we have a lot of choice, as if we could indeed go into a shop and point at the baby we wanted, the one that satisfied our list of demands, as easily as that.  But, of course, there is no such shop, and no such easy choice. The best we can do is offer some sort of selected screening.  We set the criteria, genetic trisomies, duplications, serious diseases and disablements, and we screen; a blood test, quick and easy, but hardly painless.

Again and again I find myself questioned, this time upon my position (because, it seems to question why a woman might choose to act as she does, to make a smothered request for the kind of surrounding circumstances that enable women to make an informed choice, is not the sort of question I should be asking) and I think it comes down to one idea, one fundamental notion; to serve.

Which brings me to my point about selection.  In edu-land this year there has been a lot of handwringing and wailing (these are technical terms, you know) about the possibility of a re-introduction of grammar schools.  ‘We are giving parents more choice!’ declared the politicians.  ‘You can’t choose a school that works on the basis of selection!’ replied the critics.  The argument went back and forth for the best part of the last year, and, when it turned out that after the General Election the government would not be able to carry out its plans, there was a collective sigh of relief.

However, and here is the thing, selection, whether we like it or not, is already present in our education system (and I’m not talking about those areas of the country where we have grammar schools surviving).  It’s not necessarily an explicit thing, not by any means, but it is there.  You only have to step through the school door with your disabled child and you run slap-bang into it. ‘You have to think about what They take away from the others’, ‘They do special needs much better than we do’, ‘We can’t meet his needs because of *insert safeguarding/stairs/toilets/staff/whatever reason here’; the comments fall on your ears and enter your heart thick and fast.  Putting it simply, when schools set conditions on the kind of children – or the kind of parents, even – they welcome, formally or informally, selection is in action, just as when you set criteria on what kind of baby is an acceptable one to join your family.

Some schools are better at hiding it than others.  Some schools are honest and up front.  Whatever it is, it means that while we might say that on the surface that we have an inclusive education system, in practice I am not so sure.To me, there is an aspect of taking life as it comes versus the desire to control.  Our humanity ensures that life is not some sort of perfect set of events; there are frailty, mistakes, unhappiness and joy along the way.

There are great schools around the country whose head teachers subscribe to the premise that the local school serves the local community, who take life as it comes (we sent our children to such a school), but I am tired of the pretense that this somehow means that everyone works to the same high standards.  I am tired of the educational rejection, formal or informal, through the setting of selection criteria dressed up in the language of choice, of disabled kids with imperfect parents and fallible families. I am tired of the way that great inclusive schools act as magnets in their area, because families know that at least there, they will be welcomed; of the way that it is not acceptable for bakers shops or hotels to choose their customers, but somehow OK  for schools.

It makes me wonder, when all is said and done, just who we are serving.

Blood, Sweat and Tears

I sent out a tweet the other day.  It was a little, innocuous retweet of a picture of a little girl, trying on her school uniform for the first time.  In it, she is clapping her hands, as pleased as punch to be wearing a blue checked dress, her hair in a ponytail, shiny black shoes as neat as a pin.  Clearly, her parents were pleased as punch too because they sent it out to some big hitters in the Down’s syndrome tweeterverse.  I saw it and I was glad to share it with the many teachers with whom I am connected in a virtual sense.

Such an important thing for my teacher friends to see. This little girl is ready and excited for school-and so is her family. https://t.co/02k66UedN4

— Nancy (@nancygedge) May 26, 2017

It had a surprisingly large effect.  To date, it has had 32 retweets (which is a lot for me), 90 people have saved it with little love-heart likes, there have been 8,672 impressions and 148 total engagements (whatever they are).  I’m pleased, because I thought at the time, and I still think it this morning, that it is an important little tweet for people to see – and to notice the three, innocent sounding hashtags that follow. #inclusion #acceptance #school

You see, I too have been in the place of this mother.  When my son was standing there, all togged up in his little school uniform, ready to take his first big steps away from my side (I don’t count the little ones at nursery, it was only two and a half hours anyway, hardly enough time to get there and back again and make a cup of tea in between) (if I was the sort to drink tea), I, too, was filled up with a sense of importance of what his entrance into mainstream school would mean.

You see, what I don’t think that many people understand, and why should they after all, is quite what it is like to be told that your child, the baby you hold in your arms, the one you have waited for, anticipated with such joy, is somehow less; a cause for concern.  It’s a shock, I can tell you, and not a pleasant one, either.  People who have not had this experience don’t know how it knocks you sideways, how long it takes to recover, to rebuild the life you thought you had lost.

And, again, what I think many people, many teachers, don’t understand is what an important role they play in regaining, reclaiming that stolen joy, in denying the less than and turning it on its head; the way that they can turn the role of the state from destroyer of dreams to healer and hope.  They don’t understand, and there is no reason that they should, the importance of their symbolic role in the life of another.

But, and here’s the thing; what will happen when inclusion turns out to be less warm and fuzzy and more blood, sweat and tears?  Will we blame the parents, for not telling the truth about their children, for carrying on in an irresponsible manner? Will we blame the children, for being too disabled, too needy, too naughty, dangerous, even?  Will we, instead of examining a system that fails to put in place proper and adequate support, for teachers, for families, for children, blame everyone but ourselves and throw inclusion out of the window?

I do not wish to peddle a kind of warm and fuzzy inspiration that has little effect and no lasting value, for, while the smiling faces of cute little children with Down’s syndrome and tales of inclusion might make us feel good in the moment, will they help when the going gets tough?  It might be enough for me, because I am driven by more than a moral imperative, but will it be enough for you?

 

Conquering the Mountain

Today, I have very tired legs. I am convinced that this is a genetic flaw on my part, and not because I have been avoiding most forms of exercise for the winter, but my family remains unconvinced. They, unlike me, are tired, but able to tackle the stairs without wincing. And the reason we are tired? Earlier this week, we decided to walk up and down Snowdon.

I’ve written about this plan before. For some strange reason, it has subconsciously been one of those things that R and I felt was something our kids ought to do. I’m not sure why. I never did when I was a child. I never went anywhere near the place. And, when it’s all said and done, we aren’t really a heavily into walking kind of family.  Nothing like it, in fact. But, we had a week off and nothing on the calendar apart from ‘week off’ in it and, as going on an adventure of the far flung variety proved to be a little more expensive than we had anticipated, Snowdon it was.

I don’t know about you, but there is something tantalising about good ideas when they are far, far away.  Everything about them seems positive. Nothing troubling can possibly get in their way. Except, that is, until you are faced with the reality of your endeavour.  There we were, new boots and posh socks for the children bought, accommodation (very nice) booked, and there I was, wide awake in the darkest hours of the night, unable to sleep for worrying.

In a way, it’s a bit like giving birth. After the first time, you sort of forget what it was like. The experience is coloured, airbrushed by the aftermath, whatever form that took. The second baby seems like such a good idea, and it is only when you are stopped in your tracks by the strength of your first real contraction that you think, oh, yes, that was what it was like, and why am I doing this again? After that, it has a tendency not to fade, and, third time round you know exactly what you are doing and you develop a sort of grim-faced determination, gallows humour about coughing in public daytime, and will making in the silent privacy of the night.  Once I was faced with the reality of getting my three kids up and down a mountain, with online guide rating ‘hard’, the euphoria of success faded and the memories flooded back.

So we came up with a plan. R would walk the Little Two (not so little these days) up, Sam and I would meet them at the top, having been transported by train, and we would all walk down together. A plan which rapidly transformed itself into Sam and I would travel as far up as we could on the train (always check train timetables before booking)and then meet the others (at the bit where all the tracks join together, just before the summit), walk the rest of the way up and then back down together, hastily followed by we would all go up on the train and all walk up a bit and down a lot together (the operative word being together). The thought of me on my own with Sam, on a mountainside, and the pair of us getting an attack of the collywobbles was enough to settle the matter. (And that’s before Train Boy stuck his oar in.)

When you’re at the top, it can feel terribly lonely – and the way down terribly terrible.

The thing about plans, though, is that it is always a good idea to have a contingency one. Because, when you get up to the (nearly) top of the mountain, things change. The weather, so kind and gentle when you set out, is cold and chilling; the wind is fierce, and the clouds, so far away when you are sitting, comfortable, on the bus, transform the landscape from majesty to terror in an instant.

We didn’t do it. We didn’t make it to the top. We got to within spitting distance (if the gale that greeted us as we came onto the ridge hadn’t threatened to carry our spit over the cliff and us with it) of the summit and we changed our plan, and our minds.  We took in the frightened faces of our travelling companions, looked through the entrance to the Pyg track, obscured by wisps of cloud whipping past and turned right back round the way we had come. And, I think, for perhaps the first time, I feel no sense of disappointment, or of failure, that things did not go as we had thought.

The weather did not look like this.

You see, and this is something I have found myself thinking Justine Greening could probably do with reading as I have watched her on the news today, you don’t need to terrify everyone or force the issue and put yourselves, and your children, in danger in order to prove a point.  When I wrote my book (details on how to buy it here), at the end I put in a section on what to do if it all goes wrong. Because sometimes you find yourself at the mercy of circumstances which you cannot control, sometimes you find yourself in the wrong and you have to apologise – and there is no shame in that.

This week, we set ourselves a task, and we failed. But, and here’s the thing: we made it back down in one piece (and that in itself is a success). We went the long way round (and even that had its hair-raising moments), we chatted to the people we found ourselves journeying with and shared encouragement along the way. We might even have done a little bit of Down’s syndrome advocacy while we were at it.

We are still here, today, and the mountain, that great big grim-faced mountain we couldn’t even see, will still be there, waiting for us should we decide to play again, tomorrow.

‘I hate mountains.’

Doublespeak

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.

 

To Do List

If I were the new minister, I’d really appreciate a list of Things To Do (my mum would be proud, she’s forever telling me I need to make more lists).  So I had a think, and, if it were me, if I were (by some miracle of magic) the minister, and I was in charge of education, this would be my list*.

*I don’t claim that this list should be The List, but it is my list, and it reflects my priorities.

1. Pause on the whole assessment thing.  We are sick to the back teeth, in KS2 (actually, you can make that the whole of primary) of the nonsense that has gone on with assessment for this age group.  The reading test was bonkers.  The assessment criteria for writing was unworkable.  The SPAG was at least doable, but, really, how high do the standards need to be for 11 year olds?  The Phonics Check in Year One is highly controversial amongst infant teachers – and really, you have to work really, really hard to put infant teacher’s backs up.  And while we’re at it, can we agree that the whole concept of a Below National Standard Child is something that should be consigned to the Fiery Pit of Hell and be done with it?  They are all different – they are all at different ages when they take the tests – and they don’t all progress in the same way or at the same time.
2.  Academies.  Now, that one backfired on your predecessor, and although it seems to be making headway through the back door, we (and I think I’m right about this) would really appreciate it if we were listened to.  It would be great if there could be a great big fat pause on that one too and some proper consultation with, and I know this is controversial, not just school leaders but class teachers too.  Some of us like working for the local authority – and some of us get worried when we see news about dodgy financial dealings (and we know this isn’t everyone, but still) or children with SEND being bussed off to other campuses, so we’d like reassurances that some sort of checks and balances are in place other than investigative journalists.  Those of us with an interest in SEND would also like some reassurance about how the support services are suppose to work in a fully academised system (and crossing your fingers and hoping the market will take care of it really isn’t a good enough plan, sorry.)
3. SEND.  We have had a whole raft of changes in the Code of Practice, and we need support and time to get them into place.  The financial pressure that LAs are being put under is being felt by very vulnerable children and families.  I mean, let’s face it, if we can spend a bit of money now on getting the foundations into place at the start then that’s going to save us money in the future, isn’t it?  Can we please stop pussyfooting around the issue and get on with it?
4. And while I’m at it, I, for one, speaking as a parent here, and the parent of a 15 year old boy with Down’s syndrome, am hopeful that Further Education has been brought under your watchful eye. The Code of Practice says from 0-25.  Can it mean 25?  Can we give FE Colleges some support in getting ready for the cohort of included young people coming through the system and expecting to continue with an education that is going to help them get a job and make friends – all the things that people without learning difficulties can reasonably expect to be able to do?
5. Terminal exams. Now I’m not advocating more change here, but, inclusion is a thing and there are young people who need a different study pathway than GCSEs, or need the GCSE to work for them.  It’s not failure, it’s life.  Different forms of qualification and certification are just as valuable, and it would be great if we could hear the message coming from the department – that ALL young people, when they leave school, can leave with something they can take to an employer to show what they can do (and not just twiddle their thumbs or cause trouble in their classrooms until they leave in order to do that).
6. Accountability.  It’s run a bit mad.  Now I don’t think there is a single teacher in the land who says we shouldn’t’ be accountable for the public money that we spend on the nation’s behalf, but really.  The tying of the performance of children in tests to accountability for adults has done a great deal of damage; to the teaching relationship, to children, to teachers – to the quality of the day that we experience in school – and especially those children who don’t fit the age expected mould.
7. Competition.  My school sports’ day is on Monday.  There is nothing like a bit of healthy, well managed competition to pep us all up.  However, I think the most important idea I would like you to understand is that education, at its heart, is a collaborative, collegiate exercise.  No one teacher is responsible for the educational outcomes of no one child.  The A*s of August come on the backs of all the teachers who went before, and the parents, the child and the circumstances within which they live.  It is a grand adventure, but the forces of the market place are alien here.  Instead, the concepts of togetherness, teamwork, community and belonging hold sway.  If you force market ideology on us, rather than a rise in standards, you will see a race to the bottom.  Instead of confidence, there is fear.  The child is not a customer or a client; they are a member of the school.

 

Schools are funny places.  They are idiosyncratic and quirky and they reflect the humanity of which they are a part.  I hope you enjoy being part of the team.