Tag Archives: Inclusion

Afraid

I was chatting the other day,  with some mothers of children with Down’s syndrome; what was it about Down’s syndrome, we were asked, that everyone, the world and his wife, finds so scary?  It’s a question that knocked on the door of my consciousness long before it was posed.

You can find a post on the fear of disability, and Down’s syndrome here.

It doesn’t happen straight away, but once your child is no longer a baby, or a cute toddler, a little one in a too big school uniform, once your boy starts to turn into a man, people’s attitudes change.  The miasma of fear hangs around them.  A fear of male sexuality.  A discomfort with a feminised masculinity; a man who will always need to be helped.  A not-quite someone.

You can find a post about Down’s syndrome and manhood here.

And I have written about the judgement on women, on mothers who dare to have a disabled child. Framed as choice, the discourse has more than a whiff of judgement about it, there is a you made your bed now you lie in it stench.  I have read about, thought about and written about the blame that is hung around the neck of mothers of disabled children.  Too needy. Hysterical. In denial. Awkward. Liars, even.

You can read a post about the inherent sexism present in our schools here.

Mothers of disabled children are set about with rules. In a digital age, we are told we share too much. We place our children in danger; we share stories that are not ours to tell, as if the stories of women, of mothers, are somehow less important, less deserving of a hearing.  In an economic time of debt and austerity, we must both pay the bills and stay at home. We have no need of ambition; our fate is to lay ourselves down at the feet of our children, the price we must pay for bringing to birth a disabled baby.

Today, for work (although I’d have read it out of interest), I read a report into the mental health and wellbeing of children with SEND (that’s special educational needs and disabilities) in schools, and, to be honest, I wasn’t shocked.  Depressed and angered, yes. Shocked, no.  You can read it here.

You see, we know that SEND is intimately connected with poverty and economic and social disadvantage.

We know that having a disabled child puts a strain on adult relationships and many such children grow up with an absent father.

We know that teenage girls are deeply unhappy with the world around them and their place in it, and that this is especially pronounced in girls who don’t, or who feel they don’t fit in.

We know that disabled adults and children face greater levels of bullying than any other group – and disabled girls even more so.

The report paints a picture of a toxic cocktail of powerlessness centred on the experience of women and girls; of individuals caught in the feminised state of disability.  No doubt there will be calls for change, for interventions or plans, for government backed initiatives, citing the well known unhappiness of the UK’s children in justification.  We have a big problem, requiring a big solution.

Except we don’t, not really.  To be kind costs nothing.  To be alert to bullying and to help our children and put a stop to the behaviour that has blighted the lives of so many costs little; some thought, some understanding, maybe a bit of training and a heap of commitment.  Challenging workplaces and demanding societal support for families, so that caring is shared, not carried by one person, might take a bit more, but still.

Without that commitment to change, when you look at it, when you really look at it, who wouldn’t be afraid?

 

The growth chart

There are three little red books sitting in a row in a cubby hole in my desk.  At one point they took up far more of my attention than was probably healthy, and now they sit, gathering dust, rarely seen and rarely remembered.  Inside, they contain all sorts of useful information pertaining to the health of infants, including records of health visitor visits, immunisations and growth charts.  When you are at home with baby you can pore over them and obsess to your heart’s content.

They aren’t all the same, though, and I freely admit that I had a problem with it at the time, and to a certain extent, I still do. Inside Sam’s book there is a plastic packet containing the growth charts for Down’s syndrome.  At the time, I wasn’t ready to accept that he should be measured by a different yardstick.  At the time, as now, I couldn’t accept that different yardstick as symboliaing a different standard, of expectation or of care.

And, after going on seventeen years of tangling with doctors and nurses of his behalf, I know that I am right to be cautious.  Too many people seem to accept a lower standard of health and a higher threshold for pain for him for me to be entirely trusting of the protocols.  When a young person (or an old person, come to that) cannot advocate for themselves, be that because they are too young, or because they have some form of learning disability or difficulties in communication, you, as their parent or carer, have to learn to step in and make sure that things happen – sadly things like food and drink and getting the right medicine at the right time (and I’m not talking about the NHS in recent years, either).

But, and here’s the thing, he is different.  His physiology is expressed in a different way to the typical population, and, along with that, comes an understanding that in all sorts of ways he needs something different.  At first I understood it in the acceptance that, as his mother, I was allowed – and I was – to be more anxious than the average parent.  As he has grown, I see that he needs different, earlier, bed times at home, different, adapted texts at school.

In many ways, that growth chart represents both the blessing and the curse that is a diagnosis of Down’s syndrome.  While perhaps not so obvious to the untrained eye when he was tiny, it is there, now, for all to see.  Unless you are asking for help from someone official, like a government or local authority department or something, people can see, they can hear that he is different, and that adjustments will need to be made for him wherever he goes.  If only it didn’t mean that, at the same time, people who had less of an understanding, if not of Down’s syndrome, but of him as an individual, that expectations would be simultaneously lowered.  The application of a medical diagnosis to a social context isn’t always helpful.

I’ve never taught anyone with Down’s syndrome (if you don’t count Sam).  The children who have been through my classes have been the kinds with an invisible disability, like Autism, ADHD or dyslexia – and the vast majority of them haven’t had a diagnosis at all.  And, as their teacher, I have made all sorts of adjustments in order to make my classroom the kind of place where they can learn, from special places to sit to requiring the rest of the class (and myself) to change our behaviour or printing out the words in a larger format.

Which is why I am confused by the assertion that it is only those children who have a legally protected characteristic who I must make adjustments for.  If you want learning to happen in your room (or your corridor) then adjust you will, in a hundred million little ways, from creating a calm and purposeful atmosphere of mutual respect (and no, children don’t mind when they are asked to stop teasing/winding up certain individuals, in fact, quite the opposite, and no, they don’t mind when some children need more stickers than they do, again, quite the opposite, unless we bang on about it not being fair and make out that it is the stickers or the ‘special treatment’ that is the important thing, rather than the learning) to adapting materials and resources so that they can be universally accessed, or finding a different way for a child to show me what it is they really know rather than tying themselves in knots over spelling in a science lesson.  To suggest otherwise is to perpetuate the myth that teaching is (or should be) easy, and that special educational needs isn’t complicated.

And no, I don’t see that as a lowering of standards.  What it is, is an understanding that an education is a process and that you will never, especially in a child, be presented with the finished article. Because, in the end, learning is fundamentally unlike that one dimensional, linear, medical growth chart.

 

See also:

https://notsoordinarydiary.wordpress.com/2016/10/30/the-teacher-and-the-doctor/

https://notsoordinarydiary.wordpress.com/2016/05/01/clickbait/

https://notsoordinarydiary.wordpress.com/2016/01/01/removing-the-rose-tinted-spectacles/

https://notsoordinarydiary.wordpress.com/2015/05/23/the-secret-teacher/

https://notsoordinarydiary.wordpress.com/2015/07/14/reality-check/

I’m trying desperately to keep on saying the same thing, but in a different way so you don’t get bored.

 

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.

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?

 

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.

 

Trench Warfare

Did you ever read the books about the First World War by Pat Barker?  (Yes, I know one of them is missing – someone, not looking at any of my relatives, must have pinched the first one.) I did, some time ago now.  I bought them when I was the kind of person who had the time to hang around in bookshops on a Saturday afternoon, browsing those big tables, piled with not-quite-skyscrapers of paperbacks, looking for something to spend my disposable income on.  I haven’t read them in a while, but I remember them vividly.  Whenever I have a clearout of my bookshelves (which I do on an infrequent, but regular basis, contrary to public opinion) I hold them in my hand, weighing up whether or not I wish to pass them on, and so far, the answer has been, ‘no’.

A couple of things stand out in my memory of them.  A couple of things that struck me, and have continued to strike me, over the years since I first sat dreaming, transported to a world gone by, by a skilled writer. The first is the enforced femininity of trench warfare. The endless waiting. The powerlessness of the men over their own fate. The obedience to orders they had no power to challenge. The care and concern by the officers for the men, over their wellbeing, their health, whether they had enough food, shelter or clothing. The difficulties that some men had in bending themselves to an unfamiliar state.

But the thing that echoes, the thing that haunts me, was the look in the eye, the shared experience, in this case of the horror of war, that asked, ‘Have you been there? Do you understand?’

In many ways it’s a bit like childbirth. Or traumatic childbirth, anyway. Or the bringing to life of a disabled child, of Down’s syndrome, come to that. In a sense, unless you’ve been there, you don’t understand. In many ways, no matter how many of us write or speak in our attempt to make the experience about the universal, you can’t. Unless you’ve been there, you don’t know what it is like; the forced femininity of powerlessness.

We think we might understand, because we have children of our own, or we hope to one day; we think it is enough, but we betray our assumptions with the questions we ask. So busy to show we understand, we forget to listen.

It’s the same with teaching.  Like nursing, or the law, it’s a profession with an illusion of transparency because we’ve all been in that classroom (pretty much), we all (pretty much) send our own children there. But it is an enclosed world. Even within the sector, our differences make only some of our experiences transferrable. Our own experience overlays understanding. Unless you’d been there, you wouldn’t know.

And how easily we forget. I forgot, when I went on my ten year maternity leave, what it was like. It’s so easy to know your own child, in the early days, anyway. You watch them so closely – you have to or you fear they might die – and you forget that it’s impossible for a teacher to know them like that, to be able to adapt like that. You have your home set up to accommodate their needs, a nearby toilet, quiet spaces, freedom of choice – and you forget that when you teach, you just can’t do that.

You forget, when you know them so well, that it takes time to get to know a child, and that that knowing comes from spending time with them, in context, and not on a piece of paper, for yourself, and not through someone else’s eyes.  When you have a child, the responsibility can feel overwhelming. When you have a disabled child, even more so. You will be accountable to them for the rest of your life. But you forget that other form of accountability, when you work as a teacher, the one you have towards multiple children, all equally deserving, towards government, parents, inspectors, the boss.

How easily you forget the never ending pile of things to do – the stack that grows by 30 every time you teach a lesson. You can see it in school leaders who merrily state in staff meetings, ‘it should only take a minute’, while the classroom staff quietly look at each other under their eyelashes and wonder who will point out that what seems so reasonable when you times it by one, is not a simple matter, when multiplied up. What seems so simple, from a distance, from the computer screen or from the office – from the home, even, when it is played out in the classroom, is, indeed, complex, and that the description of the complexity leads us into ethical dimensions that take time to work through, time to understand.

When I went back to work after my long absence it was a was a wake-up call. It was a reminder that I wasn’t perfect – and neither should I, could I be, that entrenched positions of enmity never help the child.  It was a reminder that, while I held responsibilities, I didn’t hold them all. I could not hold them all.  Being something and nothing, a split person,  a balancer along the tightrope, one of them and one of us, helps. Because when you walk in someone else’s shoes – or you put your old ones back on – you remember.

Have you been there? Do you understand?