Tag Archives: disability

Strictly Come Elections

Sam and I watched Prime Ministers Questions yesterday while we were eating our lunch (or rather, I watched it, and Sam tolerated my watching it while he scoffed a hot dog; thankfully, the other two were out, playing with friends, so I was released from the bonds of ‘boring’). I haven’t watched it for a while, and I don’t suppose he ever has, him being at school on Wednesday lunchtimes, and I was curious to see how it would go, all things considered.

I find it fascinating, I have to admit. On the one hand, there are the showtime set pieces, where opposing leaders insult and try to catch each other out, and on the other, there are questions about bin collection, dog mess and charity walkers on stilts, in aid of the learning disabled. For a national stage, it is disarmingly parochial.

Yesterday, there was quite a lot of shouting (but no paper waving that I noticed, and not much laughter, despite the rather forced comedy of Mr MC Speaker), and Sam waited politely for the applause to stop, and the action, in the form of questions, to start.

I had thought that he was more interested in the application of his tomato ketchup and wasn’t really watching, until, that is, a certain woman stood up to speak and called the Prime Minister a liar. At first, I thought it was the school-marmly way she did it (clearly, she has had a lot of experience, either in the giving or the receiving of tellings off) that caught his interest, until he sat up straight, eyes a-twinkle (he has very twinkly eyes, especially when he is amused), pointed at the screen and exclaimed, ‘Ed Balls! Ed Balls from Strictly!’

I have to admit that I never thought that fan-dom of Strictly Come Dancing would mark the beginning of my son’s political education, but there you go. Unlike me, a child of the Spitting Image generation, who bewails the fact that nobody is recognisable any more, thanks to the loss of political satire via the medium of puppets, he recognised a politician thanks to her connection with a different world entirely.

Sometimes I wonder what he takes in, when we sit around the tea table, discussing events of the day. A is beginning to join in; his sense of fairness adding to a growing sense of social justice. L rolls her eyes and declares, ‘boring’, although I know, through her concern for her friends, that she is not immune to the concept, either. But Sam; he remains my dark horse, as he keeps his counsel, and concentrates on dinner (or tea).

But he reminded me of something important yesterday, as we chuckled together over Yvette Cooper and her smiling, rolling eyes at the nation cheering, spangled antics of her over enthusiastic husband last autumn. He reminded me that I needed to carry on challenging lazy assumptions, because his life, and his future, matters.

He reminds me to ask you to ask your local candidates what they will do to support disabled people and whether they have read the UN disability convention.

He reminds me to ask you to ask your local candidates what they think of segregation in schools on the grounds of academic ability, and its flip side, inclusion.

His presence, and mine, reminds me to ask you to ask your local candidates what they will do to protect our National Health Services – because without a shadow of a doubt, illness or disability, learning or otherwise, can, and will happen to us all.

Becuase, in the end, bad things do indeed happen to good people; our frailty is part of who we are as humans. And our descision is how we respond to that.

Together? Or alone?

A Letter of Complaint

Heard

Believe it or not, I am not given to complaining. Not officially, anyway. I think it must have something to do with my Britishness; I don’t like to make a fuss. Either that or it’s because I’m inherently lazy. I don’t like to have to exert myself. Or maybe it’s because, like many disabled people who find that bits of the world they are negotiating are just not accessible, it’s easier to simply turn away and take my money elsewhere.

Or maybe it’s because there is always a little bit of me that wonders if it wasn’t, somehow, my fault. Getting the wrong end of the stick is entirely possible. I’ve always got half my mind occupied on something else; I live so much in the present moment that things like the start and end of school holidays or bills have a tendency to creep up on me. I’ve damaged my car in the past because keeping an eye on baby meant that I wasn’t keeping an eye on the gate post.

When you have a disabled child, a baby with Down’s syndrome, bearing the blame can get to be a bit of a habit. Your very existence is an insult to some people. The simple act of turning up and assuming you can take your place in the ordinary world, just like everyone else, is enough to get you into trouble. You get used to the difficulties that including you and your funny little family causes other people being your fault.

I find myself wondering if this continued experience of blame hasn’t got a major part to play in my reluctance to make a fuss.  Oh, I don’t like conflict, I’m the first to admit that. It makes me uncomfortable in whatever guise it takes. I’m usually the first to say sorry, the first to seek to make amends.  It gets tiring though.  To constantly live with the cognitive dissonance of knowing that you are actually in the right, that there are even laws that exist to protect you and your child and whose existence has firmly put you there, both feet on the ground, the right side of the line, and yet have people, especially those in positions of power telling you that you are, in fact, in the wrong.

You didn’t ask early enough.  You didn’t tell us in time that you would be coming along.  You asked in the wrong way; you demanded (rather than begging on bended knee).  You were rude. You were weird, strange.  And then there is him.  He was challenging.  He was naughty.  He was inappropriate, difficult, dangerous and wrong.  And by association, me: bad mother.

It’s funny when you think about it.  There is a whole industry out there, raising money, giving grants, running training courses, paying for helpers to make the world, and its activities, accessible for disabled people.  And at the same time, there is a whole load of other people, working away to make life as difficult as possible, to throw spanners in your way.

And you know what I reckon?  They don’t do it because they hate disabled people or their mothers or their families.  They do it because they can’t bear the fact that they got caught out making a mistake, getting something wrong, being the same as all the rest of us; human.

You know, when I make a mistake, given the chance, I’ll say sorry.  I’ll admit it and apologise.  I don’t feel the need to attack someone else in order to keep the world thinking that I’m perfect, that I never make mistakes.  Because, believe you me, one day, someone articulate, with good friends and good advice, despite their disability, will come along and show the rest of the world what you did, and they will all see that the pretense of perfection was exactly that.

Be a Man

Not so long ago I asked Sam what he wanted to be when he grew up.  It was part of the process for converting his Statement of Special Educational Need to an Education Health Care Plan.  It’s a question I have asked children many time before, often with hilarious results, but, seeing as the previous question had been ‘where would you like to go when you finish at school?’ and I had been met with a blank look, as if the very idea of there being a life beyond the school years, that they might one day finish, was beyond comprehension, I didn’t have much hope of a sensible answer.  It was part of the form though, so I steeled myself and prepared to write down everything he said.

And, as is so often the case with my eldest child, he surprised me.  Rather than reeling off a load of old nonsense about Lazy Town or the latest (or not so latest, he is very fond of Pasha and Abby) results from Strictly, he gave me the joyous beam of confidence and roundly declared, “I want to be a man.”

Sam is delighted by his slow transformation.  Not so delighted by the spots, it has to be said, but chuffed nonetheless.  It started before I’d even realised.  There I was, lying in bed, silently bemoaning the fact that Sam was not, and that he was, in fact downstairs and playing loudly (in a successful bid to wake the rest of us dirty rotten layabouts up), and I slowly wondered to myself what the terrible noise he was making was.  In a bolt of realisation that shot me from my slumbers (although didn’t force me out from under my warm duvet) I realised that it was his voice.  It had changed.  Without us really realising it had deepened and Sam was experimenting with a kind of ‘how low can you go’ game.  Along with the deeper voice have come hairy legs, the need to shave and bodily changes that are rapidly leaving little boy-hood behind and, as his mother, a kind of bittersweet pang at the passing of an era.  My tiny boy is leaving.  He is becoming the next generation, and I, therefore, must be old.  No longer a Young Mum.

And along with the changes come the aspiration.  When he made his declaration we left it at that.  It was soon followed by a desire to have the entire collection of Eddie Stobart lorries, and, when I went to the EHCP transformation meeting there was a whole load of other things he had told everyone else, when they, too, had asked him the same question.  As we sat and gulped, and swallowed down the rush of emotion that came with such a statement I found myself asking a question.  Well possibly two, or maybe three.

What did he mean, when he said that?  He will grow up, but I wonder what he means by being a man?  Does he mean that he will go out to work, like daddy?  Drive a car, have a home and put a wife and family in it?  Does he see himself taking on the role of provider?  The man who sustains and keeps his family safe?

And why, when he said that, did we feel such emotion?  Why is it so difficult for us to see him being a real man?  A real grown up?  Is it because he will in all likelihood always need to be helped?  Is this somehow not compatible with being a man?  Is it because he is, by the nature of his difficulties, less powerful, more needy, weaker?

And what about his sexuality?  Interested in girls he most certainly is.  But, somehow, we seem, as a society, to be uncomfortable with the very notion.  When he was a baby, someone talked to me about men with Down’s being sterilised.  I can’t remember exactly what it was they said, so full was I of anger and outrage that someone should even contemplate doing that to another, that he couldn’t be expected to exercise some responsibility for himself.  The whole idea of boys like him turning into men with needs and desires seems to strike some people with horror.

I look at my son and I think about all the expectations we have of him, who he should be, in which box he should sit, and stay.  I look at him, and I say, ‘You know what Sam, you be whoever you want to be,’ because feminism isn’t just about the girls.

When my son grows up he wants to be a man.

024

The Crystal Hedgehog

I know the new SEN Code of Practice has a lot of problems waiting in store, and @jordyjax has written eloquently about the lost children her primary PRU (pupil referral unit) serves, who nobody seems to know what to do with and the perfect storm that is brewing there, and there are swathes of children who will no longer come under the code who, equally, no one seems to know what to do with, but there is one thing in it that I kind of like.  I like the way that it seeks to bring together the worlds of education, health and social care (whether this will actually work is anyone’s guess).

You see, there is this thing about learning disability that gets my goat big time, and if you’ll excuse me for a few hundred words, I’m going to use the lens of Down’s syndrome (because that’s what I know about) to explain.  Bear with me.

I fell into an interesting conversation via my favourite social media outlet with @lollardfish (David Perry, an academic currently working in the States who also has a child with Down’s) where we bemoaned the two dimensions that children (and subsequently adults) with Down’s syndrome often find themselves in.  Like the concept of femininity, the idea of Down’s syndrome, the way we work it out, describe it, in our attempt to explain it to ourselves, locks us and them in to an unreal state.

There’s the angel story, where children with Down’s exist in order to teach us to love, or to have patience, to slow down, to look at life in a different way.  Then there’s the saviour story, where the child who needs so much saves us from our selfish selves.  And there’s the baby.  Always the baby.  The acceptable image of Down’s syndrome.  Beautiful, fluffy, cute, clickbait.  I find it interesting on an academic level, almost as much as I find it infuriating on a personal one, how close these images relate to ideals of women over the ages; passive, redemptive, flat.  Other.

There is an element to Down’s syndrome, and the stereotype that people hold of it, that continues this narrative, almost without us realising.  ‘He’ll always be with you,’ one old lady told me as she admired my baby (and I thought, ‘oh, blimey, I hope not!’), unconsciously articulating the idea that, somehow, my boy would never grow up.  An infant forever.

But, contrary to public opinion, Sam’s development from a child into a young man, like all the children I have ever known, or taught, is happening and it’s not a linear thing. He likes to play with cars, and yet his voice has broken.  He is increasingly capable of staying up late and sleeping in, and yet at the same time is reading and understanding stories at the level of a much younger child.  He is interested in girls, in his emerging sexuality, and yet he can’t quite tell which ones have grown up and which ones haven’t.  He is a glorious mixed up mashup of a person; the very last thing he is is one dimensional.

But.

While I might see him as multifaceted as the hedgehog that sits on my mantel shelf (if was a gift, and a friendly reminder of my 80s childhood), I can so easily see that other people do not.  Other people, who make working with those with learning difficulties their business can so easily turn him, and people like him,  into a Flat Stanley.  As flat and stuck in a state of permanent childhood as the boy in the book.

My grandma had one of these.
My grandma had one of these.

I first came across the phenomenon when he first started school, and other people did things for him, things that I had spent time and care teaching him to do for himself.  Now that he is in special school I am revelling in blessed relief from outrage, but I know that it isn’t, and is rarely, far away.  I know that his school will only be able to have him until he is 16 (so we’ve got two-and-a-half years left), and then we will have to search again for somewhere else.  Another someplace special.

And I have developed quite a shopping list of the things I want when we find it.  I want to work in partnership with people who believe in my son, not have him in their class out of some sense of civic duty or pity.  I want people to work with my son who don’t sit him in the corner with some crayons or an iPad or a box of cars, who don’t take away his choices by prompting him too soon, or waving his arms about in an attempt to make him sign in assembly before he’s had a chance to react or process his situation, or fetch a ball for him and teach him an altogether different lesson about himself.

I want my son to work with people who understand the idea of agency, by that I mean the decision making we adults take for granted, and how those living with disability have so little of it. It is an accepted state for a child, although what with the continuing revelations of historical child sex abuse, one that we seem to be questioning, that of being excluded from decision making, to be the passive recipient instead, but it’s not for an adult.  I want people to work with him who won’t jump in to answer for him, to prompt him too soon before he’s had a chance to think, to give him the dignity of making decisions wherever possible, as they would any other young adult.  When I think of my son, and the difficulty people seem to have in seeing him for who he is, in looking beyond the stereotypes, I fear.

I want my child, my children, to be educated and grow in a system that is flexible enough to give him the education that he needs, not the one that is the ever bouncing political football, that gives children the time and space they need to grow into the people that they are, not forces them through some sort of standard-person sausage-making machine, or labels them with an inappropriate and limiting stereotype if they don’t fit.

I want to work with, and have my son work with people who see the totality of who he is, who pay as much attention to the development of meaningful friendships as they do to his phonics and spelling.  I want to work with a profession, I want to be part of a profession that isn’t too tired, or too busy, or under too much pressure, and isn’t surrounded by so many competing demands that they can’t see the wood for the trees.  I want to welcome people into his life who are keen to give him the skills he’s going to need as he makes his way into the adult world, be that information about sex or spots or using the bus or paying the bill at the till, because he won’t  be a child forever.

I want our schools, our system, to be human.

 

 

How are we going to make this happen?  Join the debate.