A Soapbox Moment

Once again I’m rolling my eyes and sighing, getting my flat-pack soapbox out of my pocket, unfolding it, placing it on the floor and stepping up.

The new Mencap campaign was launched only a matter of hours ago, and yet already some in our community are complaining that they do not like the TV ad. 

I cannot help feeling that they are nitpicking over details without looking at the bigger picture.
In it a DJ with Down’s Syndrome changes the discriminatory words of an academic from the 1960s from ‘Down’s syndrome is not a person’ to ‘ Down’s is a person’.
Yes, I know the voiceover at the beginning is upsetting, but then the ad is meant to be edgy, shocking even. And although the phrase ‘Down’s is a person’ is both factually and grammatically incorrect, and is not one I would ordinarily want to hear, I think in the context of this ad it is not offensive.It represents a subtle shift in attitude away from a dehumanising view of learning disability towards a more humane one.
This is what we need to bring about — subtle shifts and small improvements. 
We have a such a long way to go to change public perceptions. We cannot hope to cover the distance in a single bound, nor to smash down existing beliefs and replace them with completely new ones overnight, Human beings are creatures of habit: they find change uncomfortable, painful even.to challenge too suddenly and too aggressively the deeply ingrained beliefs upon which their world is built is to threaten the foundations of their existence, and they will fight harder to cling to the safety of a belief system in which they know exactly where they stand, even if it is wrong. 

Perhaps what we need to do is to subvert existing attitudes, creep into the public consciousness like sneak-thieves, steal a few words at a time out of the prevailing narrative, and rearrange the rest so that the change is barely felt, and little by little gently mould and manipulate them to give a new message. This means that there will be some discomfort on our side from time to time, but since we are the ones who want to see the change happen we must put up with it, in order to acheive our ultimate goal. We cannot afford to push others too far out of their comfort zone or we risk alienating them, so we must instead push ourselves out of ours. 
No doubt some will be rolling their eyes at me now. But if you really want to see change happen, what good does it do to sit on your arse whingeing at those who actually do something to try to change the world?
Here endeth the rant. for today.
#HereIAm #worldWITHdowns

What I Love About SEN school.

I have noticed that there are some very negative perceptions about Special (SEN) School among some parents in the Down’s syndrome community. Inclusion in mainstream is held up as the gold standard; having your child end up in a SEN school is seen as Failure; I have seen parents become bitterly disillusioned when it becomes apparent that their childs needs can really only be met at a Special school, and this saddens me. Other parents can find themselves guilt-tripped out of even considering it by the feeling that they will be somehow selling their child short, or letting them down, if they choose Special school.

I’ve been doing the school run for fifteen years now, and in that time I’ve had two children in mainstream school and one in SEN school, and if there is one thing I have learnt it is that SEN school is not the bottom-of-the-barrel option, it is not about failure, or giving up on children, or just ‘babysitting’ them for the day, and it is not about segregating disabled children away from mainstream. It is about appropriate and accessible education. It is about acknowledging and accepting difference, and the fact that different people need different things. Inclsuion in mainstream is all very well when it works: when the school can meet the child’s needs, and the child can cope in a mainstream environment, but this does not always happen.  Of course there are good and not-so-good schools in both sectors, but Mainstream and SEN are, in a sense, two different animals, and one is not less than the other.

I love that Freddie is in a class of ten pupils and three staff (plus one extra to assist a visually-impaired pupil). He gets a much bigger share of attention than he would in a class of thirty. Yes, in mainstream he would have one-to-one, but there is no guarantee that his one-to-one would have any special training or knowledge. With a pupil/staff ratio of roughly 3:1 he does at least have to learn to stand on his own two feet a bit, but in a very safe environment.

I love that all the staff in his school are specialists in SEN, and are aware that our children may need to be learn and be taught in different ways. I love that they seem to be able to be much more flexible and creative in the way they work than mainstream would allow, it means they can be very responsive to individual need and circumstance when neccessary.

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Everything’s more fun with a friend – Freddie does some shared reading activities with another pupil in his class. Their complement each other in their abilities, and encourage one another.

I love that I don’t have to fight for anything, and I don’t have to be constantly going into school to sort out problems. The expertise we need is all in place.

I love that all the staff have great experience in dealing with challenging behaviours in a calm and constructive manner. I love that they know how to discipline children with additional needs effectively, and that they have certain expectations of the children, and know how to communicate them in a way the children can understand.

I love  that acheivement is measured on an individual level at Freddie’s school; each child is encouraged to improve upon their personal best, and when they do so this is celebrated, no matter what others in the class have done. This is only fair because, as the school recognises, their children come with widely differing needs and abilities. Likewise,  I love that Freddie gets certificates for things like ‘giving his seat to a friend’ or ‘being helpful’, or ‘joining in’. I love that they gave him a  ‘Kindness Award’. I love that they acknowledge the children’s positive personal qualities. You might think that this is to be expected in a school where all the pupils have some degree of learning difficulty and are not expected to acheive academically, but wouldn’t this be a good thing in all schools?  You see, THIS is where I have deep misgivings about mainstream school, not just in regards to inclusion for disabled pupils, but in general.

My older children and their classmates were pressured relentlessly to acheive particular, very specific, results – latterly this pressure was to acheive A* at GCSE and A’ level. No other result was considered an acheivement worthy of note. My elder son was told by his Maths teacher that if he ‘only’ got an A he would be made to resit until he got an A* Maths was not, and never had been, his particular forte, and yet he was being expected to perform at the same level as pupils who’d been mathematical whizz-kids since the day they started school. Because, of course, all typically-developing children have been popped out of the same typical mould and are all exactly alike. Aren’t they?

Believe it or not, there are some young people in mainstream, some typically-developing young people, who do not pass any GCSEs. In a system that only recognises academic acheivement (and then only within a narrow definition) how can such young people have any idea of the personal qualities they possess that might carry them forward in life? In my day they would have at least got a reference from the Headteacher; a letter detailing the positive attributes they had that might make them a good employee. What do they get from the current system, apart from an abiding sense of having failed before they’ve even started?  I do think that school ethos is one area where SEN schools like the one Freddie attends are getting it right, and mainstream schools are often falling far short of the mark.

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Forget underpants – no pirate is complete without his treasure map (I may have given him a teeny bit of help with this).

There is one complaint I have about Freddie’s school though: while I love that they strive to make learning not just accessible, but also fun, by having ‘themed’ activities, I do wish they would teach their pupils, in advance of being allowed to go to school dressed up as a pirate, that pirates DID wear underclothes. I had the devil’s own job persuading Fredie that he had to put pants on before he could put his dressing-up clothes on. They nearly got a commando pirate!

 

 

 

 

 

 

 

 

 

MEMENTO MORI


This is one of my favourite posts from the archive; I think it demonstrates the difference between the reality experienced by the families of those with Down’s Syndrome, and the mistaken perceptions held by the public (and medical profession) of what our lives must be like.

MEMENTO MORI.

I had another life-validating encounter in town last week. I’ve had quite a few of them over the last six-and-a-bit years. When I say life-validating, I am not mistaking the term ‘life-affirming’; what I mean is … well, I’m struggling to put it into words exactly … but what I mean is this:

I was in a shop in town with Freddie. As we walked down the aisle in one direction, an elderly couple approached from the opposite. The man was frail and stooped, leaning heavily on a walking stick. Freddie shouted out a cheery ‘hello’. Hearing him, the man looked up, then made his way over to us. His face bore a rather wistful expressioN as he ruffled Freddie’s hair, and stroked his cheek. ‘What a grand little chap,’ he said. I could have sworn there was a slight edge of emotion to his voice as he repeated, quietly: ‘a grand little  chap.’

‘We had some wonderful times with our Alan,’ he continued in a faraway voice. The lady with him, who I presume was his wife, explained that ‘Alan’ was the gentleman’s brother, who had also had Down’s Syndrome. She confirmed that they had, indeed, had many wonderful times with him over the years. We chatted for a bit — the man told me about the sort of things that Alan used to ‘come out with’. The couple’s smiles were genuine, twinkling in their eyes, but they seemed, as I observed, rather wistful.

Then the lady said: ‘He’s passed away now.’

‘But he was a good age,’ said the man. ‘He’d turned sixty.’ (Two generations ago, this would have been a good age for a person with Down’s Syndrome.)

I knew then why they were so wistful — because he had brought so many good things into their lives, and they missed him.

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CLOSE ENCOUNTERS IN PRIMARK.

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Primark is a great place to find a bargain; but, whilst shopping for cheap shorts and tee-shirts for Freddie’s first holiday, I found something I hadn’t bargained for.

Freddie was eighteen months old. I was browsing tentatively, keeping an eye on him as he craned out of his buggy, trying to reach the nearest garments to snatch them off their hangers. ‘Hiya’ was his only word at that time, and he shouted it enthusiatically at every passer-by, hoping for a reaction. Soon enough, he got one. A lady, well into her seventies, came over and began to coo at him in a grandmotherly way. Freddie lapped it up and became utterly charming, making eyes and flirting outrageously. I joined in the conversation with some apprehension. Would she notice? I knew the words people of my mother’s generation used to describe children like Freddie, the negative preconceptions they held.

Suddenly she called out to someone I could not see, presumably a baby-loving companion: ‘Jan! There’s a little one here.’

My attention was on Freddie, I was looking down, wiping his chin. A lady’s feet apppeared in front of the buggy, a head bent over it and was treated to a luminous Freddie-smile.

‘Has he got Down’s?’ she asked

‘Yes,’ I said firmly and looked up … into a pair of distinctively up-slanted eyes. ‘Just like me,’ she exclaimed, beaming.

We talked and talked, all shopping forgotten. The conversation glowed warm with love and positivity, as did the good-natured banter between the lady and Jan.

When Jan went off to look at something that caught her eye, the lady said: ‘If everyone was more like my daughter there’d be no wars. She sees the good in everyone.’ She told me that she had another daughter also, and four grandchildren, and, to my complete astonishment said that this other daughter had always hoped to have a baby with Down’s herself, so much did she adore her sister. ‘Longed for’ were the words she used.

Primark tee-shirt — £3.50. Finding acceptance and love among the racks and rails — Priceless.

Fashion Advice for the NIPT Generation

This morning, completely oblivious to the up-coming A World without Down’s Syndrome documentary, Freddie chose to wear his Christmas jumper. I told him he could choose whatever he wanted, and he chose that.

It’s not what I would have chosen. I chose a short-sleeved top and harem pants I bought for the beach. But then, Freddie is a little boy with not much meat on his bones who doesn’t care what anyone thinks of the pattern on his knitwear, and I am a woman of ‘a certain age’ with plenty of insulation. I spent the day ironing, Freddie sat playing on his iPad, or looking at books. We were both comfortable and happy with our choice.

 

People will choose different outfits even when experiencing the same weather, according to their individual needs and tolerances.

 

Freddie was fully aware that it was a Christmas jumper. He was fully aware that Christmas is in December, and today is only the 5th October. Before we decided on our clothes we had looked out of the window to see what the weather was like, and talked about how it might change later, what was usual for Autumn, and even about how it has been rather warm lately. If we’d been planning to go out, I’d have looked at the weather app on my phone. So, we each had lots of information to help us make our choice. In other words, we made an informed choice.

 

When someone makes an informed choice, they are much more likely to make the right choice for them.

 

 

If, however, I did not consider him able to make an appropriate choice, and considered the Christmas jumper inappropriate, then I might have hidden it at the bottom of the laundry basket from the beginning of January until the end of November. Or perhaps kept the curtains closed, told him it was usually still quite warm in October, so he should choose a t-shirt or he’d get too hot. If he still insisted on wearing it I could keep asking him if he was sure he didn’t want to choose a different jumper. But that wouldn’t have been a real choice.

 

A prescriptive choice is no choice at all.

 

One of the dictionary definitions of choice is: ‘alternative action, or possibility’. Choice, by definition, involves alternatives.

 

A choice in which we are steered towards, or away from, one of the alternatives is not really a choice.

 

Some people really do not want a Christmas jumper. When they go shopping for clothes, they choose not to buy a Christmas jumper. Others, though, are just happy to be getting a jumper, they don’t mind if it’s a Christmas jumper, they’ll absolutely love it, like Freddie loves his.

So, doctors and midwives, if a patient comes to you bearing a Christmas jumper, don’t assume they don’t really want it and arrange for it to be thrown in the bin, without asking them if that’s actually what they want. Don’t ask repeatedly: ‘Are you sure you want that jumper?’ A Christmas jumper is just as much a jumper as any other; it’s knitted, it has sleeves, a hole for the neck, and it’ll keep you warm – it’s just a bit more colourful.