Genetic diversity

genetic diversity

We stand on a precipice.

Soon we may see the eradication of types of people who have been part of us for as long as being us has meant being human.

People don’t like talking about this.

I know that. The morality of this is complicated and overlapping.

It is bound to be uncomfortable.

But we have to talk about it because when we don’t, when we hide behind ‘it’s a difficult personal decision and nobody else’s business,’ we know already it is genetic diversity that loses.

90% of parents who find out their child will be born with Down’s Syndrome choose to end pregnancy. As tests for DS and other genetic differences become less intrusive and dangerous to the foetus this percentage will rise.

In Denmark where such tests have been available for longer the abortion rate for children with DS is 96%. In Iceland it is nearly 100%. As DS and other examples of genetic diversity become rarer it is increasingly less likely mothers pregnant with such children will give birth to them. This is because knowing your child with DS may never get the chance to meet another person with DS drastically changes the grounds on which decisions are made.

Having any child is scary. Having a different sort of child is very scary. Knowing you and your child have to make this journey alone may prove to be too much for many of those who might otherwise have been open to it.

Those of us who believe Down’s and Williams’ Syndrome represent different sorts of people rather than diseases should all be alarmed.

There seems little chance law will step in. Our only hope in keeping such people with us is to convince those with babies who test positive to continue with their pregnancies.

It is very easy to see why most choose not to. The whole language around people of genetic diversity is slanted to portray them as problems. Tests outline the ‘risk’ of having a condition and parents who are deemed ‘at risk’ are typically presented with an alarming list of deficits, from learning difficulties, to physical ailments all the way through to a limited lifespan.

Despite this we all at least pretend to be positive about genetic diversity. We like videos of such children walking for the first time, or being helped by their abled peers, and we love to cry together when we see videos of them singing karaoke with their mums in cars.

My suspicion is fundamentally we really do want people to have children like these but we really don’t want it to be us that has them.

A significant reason for this is the voices of those sharing lives with the genetically diverse are too quiet. We hear little about day-to-day experiences and what we do hear is often slanted towards challenge not joy, with parents of such children seemingly doomed to lives of noble suffering. Which is a shame, because sharing life with someone who sees the world in a radically unfamiliar way is amusing, fulfilling and inspiring.

A fortnight ago my two-and-a-half year old daughter left our table in the pub to go and eat dinner with a stranger. She got down from her chair, marched over to someone who was dining alone, clambered up into the chair opposite and helped herself to their chips. All the while she babbled, cooed, scribble talked, and laughed and grinned until her dining companion was utterly in love. My wife and I still collapse into helpless laughter when we remind each other of it, which we do a lot. A week ago my daughter approached a couple at the village fete and made them dance with her. She led the moves and wouldn’t stop until they’d copied them all, while her grandmother and I watched with a pride so fierce it brought us to tears.

My daughter’s condition means she’s likely to still be doing stuff like this when she’s sixty. To me, a person who often feels so awkward with new people at parties I struggle to look them in the eye, this sort of behaviour is an unfathomable wonder. Of course it may be tougher to manage when she’s older but I don’t think it’ll be any less of a joy.

And however challenging it gets it won’t change how endlessly fascinating it will all be.

We are blessed with an unusual child. One whose wires are connected differently. A person whose notes are arranged to play songs in a different key. A person who sees the world through lenses we will never see through no matter how hard we might try. Instead of empathising we get to pay attention. We get to watch and to wonder, to marvel at the mysteries of creation in its fullest sense.

Knowing all this how can we not be sad and angry when we hear there are less and less people like my daughter being born? Knowing all this how can we do anything but shout as loud as we can about how wonderful it is to walk the world with someone who sees things utterly differently to the rest of us?

Long before Bessie I wondered what it would be like to know someone whose brain worked in a completely different way to those of most people. I used to wonder what it would be like to see the world like an Einstein, Mozart or one of the Shelleys.

My world is one in which I don’t imagine.

I live with a person like this and for all the challenges life with her may bring the gifts she brings are too grave and joyful to ever want to change.

There she is in the room next to me. I listen to her breathe as she sleeps, as I go on thinking endlessly about the great mysteries of humanity.

This must not be a warm but empty feelgood piece.

There has to be a sharp ending:

If you believe in genetic diversity and you find yourself with a decision to make, and you aren’t sure what to do, please think ‘if not us, then who?’

Remember if you choose to go on, you won’t be alone. We’re here. We’ll always be here.

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What should I do?

niva

Back when my wife and I lived in Ethiopia we took our 4X4 Lada Niva out on an adventure to the Bale mountains. We broke down in perhaps the most inconvenient place imaginable to break down. The nearest city was miles away and for a week we found ourselves stranded in a one café village.

Lots of people tried to help but nothing worked. We became so desperate that at one point we almost allowed an ancient Landcruiser to tow our Niva onto the edge of a small ravine so a rickety bridge made of splintered wooden planks could be used to move our car onto the back of a truck.

With images of our car dropping twenty feet into a ditch and being smashed into pieces, at the last minute I halted what, with hindsight, was a plan we should never even have considered.

Years on, Amber and I can laugh about this, but at the time it wasn’t funny. It was stressful because we just didn’t know what to do, and the stress of not knowing what to do led us to consider crazy things we wouldn’t have otherwise even thought of.

Not knowing what to do is stressful. This is why starting as a teacher, starting a promoted role or even moving schools is difficult.

Whatever a person’s role, working in a school is indescribably complex, with large numbers of decisions having to be made each hour. Having to think individually about each decision is exhausting and so, as time goes by and we become more experienced, we automate some of these decisions and so free up working memory to think about other stuff; before we know what to do we need to work it out.

For example, when we know the system by which we get photocopying done, we might send off an email without thinking. Before we know the right person to email we have to spend time finding out who the right person is, how the request should be formatted and perhaps even making do without, which then causes knock on complexities later in the day.

Similarly, not understanding a school’s behaviour policy can also cause a great deal of stress. For example we may know children are not allowed phones out in school and needed to be confiscated if they are seen. However, we may not know what to do if the child refuses to hand the phone over and walks away from us. If we know what to do in this situation – for example emailing a centralised on call system to pick up the child later – we are unlikely to be unduly stressed by it, but if we don’t we may end up arguing with the child or even following them around the playground in a sort of undignified game of cops and robbers.

Some contexts are easier than others. When there are simple, clear systems and procedures followed by everyone then it doesn’t take very long before we find ourselves automating our decisions and can begin to think more strategically. When there aren’t clear systems, or worse when there are on paper but nobody actually follows them it takes far, far longer. When things are most chaotic the best that can ever be achieved might be our own individualised procedures and systems which have to be continually reiterated to pupils who experience different systems elsewhere.

It is important SLTs prioritise the development and maintenance of these clear and simple systems. Without these all staff will find themselves wasting too much time in making knee-jerk reactive decisions, dealing with the repercussions of these and then becoming frazzled. It is also well worth remembering anxiety and stress make bad decisions much more likely and can, on occasion, contribute to unprofessional behaviour. In chaotic contexts the best achieved by many teachers will be day-to-day survival, making proper strategic decision making impossible. CLT is useful here – as an SLT member would you rather your teachers are thinking about curriculum, teaching and learning, or what they should do if a child is found truant during lesson time?

Staff lucky enough to work in a context in which there are strong, clear systems should learn and use them. Often the cause of stress is just not knowing what to do, and the best way to avoid becoming stressed is just to find out.

This is probably as true of life in general as it true of schools. My wife and I, after a week of worry, resolved our car issue by just phoning an Ethiopian friend who immediately told us we just needed to hire a mechanic from the capital city where we lived, who would travel down to us, fix the car, then drive it back for us when the work was done. Apparently it happened all the time and there was a clear system for it.

Looking back it seems so obvious. The reason it wasn’t was we were so stressed about not knowing what to do we weren’t thinking straight.

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Magic in the hinterland

Snow Storm - Steam-Boat off a Harbour's Mouth exhibited 1842 by Joseph Mallord William Turner 1775-1851

At TNA all classes begin with some form of retrieval practice. This is usually a short low-stakes quiz, self-assessed by pupils as their teacher goes through the answers once it is finished.

The benefits of this are now widely accepted. The testing effect makes children more likely to remember things they are regularly quizzed on.

Done well, there are other benefits too.

This week I was in a lesson in which one of our art teachers turned retrieval practice into an opportunity to teach new, inspiring hinterland knowledge so well it left me a little giddy.

Tej’s quiz was on impressionism, with one question on the purpose of the techniques Turner used. The correct answer, which all pupils got, was to give a sense of feeling and emotion. Tej could have stopped there but didn’t. Off the back of it he stepped gracefully into a developed exposition, telling the probably apocryphal old story of Turner lashing himself to the mast of a ship in a storm at sea, and finished with an overview of method acting so vivid it drew gasps from his class.

None of this was core knowledge.

All of it was important and inspiring.

The hinterland perfectly framed the core, adding magic, colour and wonder, shoving us out of our stuffy rainy-day classroom and connecting us to the great mystery of human creative endeavour.

Earlier this week I saw someone tweet something about being worried if we kept challenging teaching techniques soon all we’d have left would be dry knowledge organisers and boring tests.

I’m not worried about this in my school.

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P8 pits schools against their pupils: A GPA might fix this.

dog pulled two directions

“I’m not going to revise for French. I don’t need it for college.”

For teachers of non-core subjects, there are few phrases more worrying than ones like this and, infuriatingly, there are often no satisfactory replies. Usually we gape, stutter and babble, at last arriving at arguments it is far too late for; ‘exams aren’t everything’, ‘you never know what you might need in the future’, or ‘jobs look at all your GCSE results’.

All these arguments ring hollow. Nearing the end of Year 11 with less and less time available for revision, the problem is pupils choosing to focus on some subjects over others are actually behaving quite rationally.

As we all now know well, Progress 8, our dominant measure of school effectiveness, draws on eight subjects. Few colleges or sixth forms care about this, especially those selecting pupils for non-academic qualifications. Instead their offers typically ask for Maths and English at grade 4 or above (which can be resat at the college), plus a varying number of other qualifications relevant to the specific post-16 course the pupil wants a place on.

The problem is our accountability measures often pit the interests of individual pupils against those of their teachers and schools because if a pupil chooses to spread their study time evenly they may drop grades in the subjects they personally need for post 16 courses. Those schools serving pupils in areas in which academic success is rarer are disproportionally affected because there is less slack than in areas in which children perform well.

Right now, what is of benefit to the school may actually be detrimental to its individual children.

This mismatch in priorities may well be a reason, in the past, some schools have chosen to gameplay with low value qualifications that are easy and can be taught quickly. It is far easier to get pupils who don’t care about RE or Resistant Materials to spend three days on an intensive European Computer Driving License course than is to get them to work hard at courses they don’t like and that they will never think about again once they finish their exams.

Of course, the most significant issue here is our competitive and consequentialist examination system, which implies the point of the subjects we teach is found only in grades. I’ve written about this here. Fixing this will require systemic and attitudinal change, and will be very hard.

Far easier, in the meantime, would be to change the way in which pupils are held accountable for their exam results to bring them in line with the measures we use to assess school effectiveness.

A simple way to do this would be introducing an American-style Grade Point Average (GPA), taken across eight subjects, which post 16 providers could use alongside grades required for specific courses. For a course such as ‘A’ Level history, an offer might say ‘Grade 7 or above in history, at least a 5 in English and an overall GPA of 6.7’. For a course such as Uniformed Services, a college may make an offer of “Grades 4 and above in English and Maths with a GPA of 3.8”.

A GPA system would also provide parents with a very simple, easy way to see how well pupils at a school perform over the wider curriculum and would also allow school leaders and inspectorates a simple measure of how well a school is performing over time. Such a measure would also be more consistent with Ofsted’s recent and laudable focus on curriculum, because an average GPA would draw on performance in all subjects.

This would not mean all pupils would stop prioritising completely, but it would mean there would be a cost to them of not bothering with a subject at all – a 0 in geography would have meaningful impact on their average and make giving up much higher stakes than it is now.

Such a system might well mean grades in core subjects falling, but if we are genuine in our commitment to a broad and balanced curriculum, then this may well be a price worth paying.

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The best that has been thought and said?

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I am going to be a little smug. A couple of years ago I said arguments about the most effective way to teach would die down and would be replaced by a much more useful debate on what we should be teaching our children.

I think I was right. Debates, at least on twitter, around pedagogy are collapsing quickly. Fewer snazzy activities designed primarily to be engaging in a reductive sense are being shared. While methodology is still discussed the discussions are cleverer and more nuanced. While an ideological schism still exists, there seems to be far fewer people using lines like ‘and the kids loved it’ as a supposedly clinching argument.

There is now an emerging consensus that the most important of our aims is for pupils to acquire new knowledge, with our methodological disagreements being on the best way to accomplish this.

Not too long ago, I jokingly said to Mark Lehain that when we got to this point we’d fall out over what pupils should learn. We haven’t (so far at least), but people have done. Robust and serious disagreement over this, the most important of issues, isn’t necessarily a bad thing, but to avoid unnecessary unpleasantness it might be helpful for those of us in this debate to have a think about the terms of engagement.

Matthew Arnold’s “the best that has been thought and said” continues to act as something of a lightening rod for disagreement. I genuinely get why lots of people have issues with it. It is a clunky phrase. It isn’t clear how this applies to lots of subjects we teach in schools, even before we get into exactly how we decide what we mean by ‘best’.

If we are to talk about ‘the best that has been thought and said’, then it would be helpful to begin working out some criteria to use when talking about it.

The absence of agreed criteria might be one reason the whole Stormzy Vs Mozart thing has run and run. If we leave ‘best’ unproblematised then debates similar to this, always circular, will recur again and again. I think The Verve’s Urban Hymns is better than Blur’s Parklife. Some of my friends disagree. I believe Alex Garland’s The Beach to be an important piece of fiction. One of my friends thinks it is superficial twaddle. Without a framework to have discussions about ‘best’ then all that can really happen is the swapping of opinions.

I’m proposing that a good starting point for this might be ‘that which has endured’ – work that has been appreciated by many people over a long time. This is, of course, only a starting point to begin talking. There will be disagreements over what ‘many people’ and a ‘long’ period of time are, but these discussions make us move beyond our own biases, because it necessitates the consideration of views other than our own.

If we did this, it means we have a framework within which to ask questions like “which people think this is important and why?”, and “has it been long enough for us to be sure this is a significant piece of work?”

For this reason, for what it’s worth, I wouldn’t have Stormzy in a curriculum, not because he isn’t great (I don’t know enough of his work to make a call either way), but because it just hasn’t been long enough for us to know whether his music will still be considered influential in twenty years. For the same reason I would not have Anna Burns’ The Milkman, or even Donna Tartt’s “ The Goldfinch”.

Allowing a stretch of time between something’s creation and its inclusion on a school curriculum also makes it more likely to be new to children, whose interests are often confined to what they already know about. If the curriculum is to fulfil its true purpose and connect our young people to the richness of the infinity of human experience then surely it is a waste of time to teach them about things with which they are already familiar?

This, emphatically, is not an argument for the teaching of only supposedly ‘highbrow’ knowledge. While the sorts of knowledge, regrettably deemed elite by many often has a natural advantage due to age, as time goes on other ideas, works and topics should gain traction. While I’m reasonably confident I do think teaching Mozart is more important than teaching Stormzy, I am much less sure Mozart is a more appropriate choice than Muddy Waters, Sam Cooke or the Beatles.

As new ideas or new scholarship on old ideas develops what we teach should change, but curriculum should move more like a glacier than a river. To know whether what is happening right now will become worthy of inclusion is something I suspect we have to be patient and wait for.

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Thank you, Tom

first light

The loneliest I ever felt was in a school assembly, the day after my wife and I were told our daughter had Williams’ Syndrome.

Looking back it seems weird I even went to school. Having not slept at all the night before and nauseous with worry, I probably should have phoned in. But I was new and didn’t know anyone, and the thought of having to explain why I needed time off just seemed unimaginably difficult. So I got up, showered and drove in.

Of course I left my phone on all day, and in an assembly it rang. Everyone laughed as I scrabbled around in my pockets. I couldn’t even just turn it off because I had to look at the screen to see if it was my wife or a doctor.

It wasn’t actually. It was an 0800 number so I just hung up.

As everyone carried on laughing I twisted my face into some sort of smile and apologised, terrified all the time that I was about to break down into the sort of sobs that don’t stop whatever you do. I remember thinking “I want my wife.” “I want my mum and dad.” “I want to be with my old department.”

Although I didn’t know many of them well the teachers at the school were nice people. Nobody came to tell me off. Nobody was horrible. They were light-hearted and jovial about my assembly faux pas but somehow that made me feel even more alone. The oddity of us being in the same physical space but yet in so completely different universes struck me as being almost unbearably grotesque.

How dark those times were.

Things stayed scary for a good while after that. Every appointment seemed to bring more bad news. It felt like every time we met someone we were told more negative things and given more to worry about.

Sleepless nights and days that dragged and dragged and dragged.

I got some hope back the first time we met our paediatrician, Tom.

I don’t know whether or not Tom had any idea how low we were, how acutely we were feeling the pinch of life’s jaws, just how precarious the tight-rope felt. I don’t know whether he suspected I was hardly sleeping, or that my wife was sleeping even less. I don’t know what he knew and didn’t about us, as he sat opposite in his rumpled shirt and slightly scuffed brown shoes, sitting folded up in a way that made him look just a bit too big for his chair and desk. But I do know he’d spent hours reading about Williams Syndrome and that he was open about what he didn’t know and how he was going to find out. I do know that he was warm and that he tickled my daughter, and looked at her in a way that made me sure he didn’t see her as a problem. I do know he seemed excited by Williams’ Syndrome, which was important to me because I was going through a conscious process in which I was making myself see it the same way.

My wife and I felt comfortable calling him Tom the second he introduced himself. We got to know him well. He was the one who shared the good news with us when tests came back positively, and the one who told us we’d need to spend time in hospital when the news was bad. While we were there he phoned the ward every day to check how she was, which we found out from a nurse who made a point of telling us this was unusual.

As time has gone on and my daughter has thrived, we’ve seen less of Tom, which is why the emotional punch I felt when I heard he probably wouldn’t be our paediatrician in the future surprised me a bit. And this news did hit hard, making my want to call and beg and beg and beg for him to stay working with us forever and ever.

I didn’t. That would have been silly. We’re fine now and we know he never belonged to us. We can cope without him. But there was a time when it felt like we couldn’t, when it felt for a bit as if we were alone.

Thank you, Tom. We wish you well. You’re a professional doctor with hundreds of patients. You’ll probably roll your eyes when you read this.

That’s fine, but it won’t stop us thanking you publicly. It won’t stop us remembering you as first light at the end of the darkest of nights.

We’ll never forget you.

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TES Education Resources: An Open Letter of Concern

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This post has been agreed by several teachers and is shared across several blog sites.
In the last couple of years, we have openly expressed concern at the approaches taken by Tes Education Resources to plagiarism and copyright violation, theft of resources, and the selling of resources that violate copyright. This is not a blogpost intended to cast disapproval on those who sell resources. It is a simply an open expression of concern at the approach taken by Tes Education Resources, when these incidents are uncovered. We also wish to make clear that this is not about an individual or anybody working for Tes Education Resources. We believe that this is a systemic problem that should not fall on one person to solve.
We feel that the following issues need to be properly addressed by Tes Education Resources:

  • The fact that people upload and sell plagiarised resources, which have been clearly copied from free shares on Twitter, Facebook, and sometimes from colleagues.
  • The fact that although Tes Education Resources offer ‘goodwill’ gestures to those who give public challenge, and offer compensation when they recognise plagiarism, the onus is on the victim of theft to report and prove the theft.
  • The fact that customers are being advised to buy resources to check the content if they suspect a theft has occurred, and then claim the money back.

These issues need addressing because:
Plagiarism can constitute copyright violation, which is covered by legislation in both UK and EU law, as well as being a feature of international treaties and agreements. We believe that this is not being taken seriously by Tes Education Resources, who provide a platform for the sale of resources which have been taken, copied, and presented as original resources by the thief. Tes Education Resources describe themselves as ‘one of the world’s largest peer-to-peer platforms for teachers to trade and share digital teaching resources’ (Tes Education Resources Ltd: Annual Report and Financial Statements – Directors’ Report 2017). We feel that a company of this scale, regardless of financial status, should not be placing the onus on individuals to identify instances of copyright violation.
A goodwill gesture is something given on a case-by-case basis. It means that those with the time and tenacity to challenge instances of copyright infringement are being offered compensation, but there are victims who are unaware of the issue, or perhaps who do not have the time and resources to prove the provenance of the resource. We believe that the Tes Education Resources could and should ensure there is parity here.
Tes Education Resources have conceded that only 5% of their resource downloads are purchased. The rest are free downloads. We appreciate this valuable resource, but feel that the 5% are being prioritised over the 95%. It is understood that the 5% is the download, rather than the upload, figure – but the point still stands – 95% of people downloading from Tes Education Resources are downloading free resources.
We also believe that asking people to buy resources to check for copyright issues, in order to then claim a refund, is an unfair and illogical request. Perhaps most pertinent is the fact that all of these issues are contributing to our workload. The Tes recognise this too. In fact, they have an entire section of their website dedicated to this issue – you can read this here:https://www.tes.com/news/hub/workload. In refusing to adapt their practice, either by demonetising the site or by taking further steps to prevent these incidents, teachers are being forced to spend time searching the site for their own resources. When teachers locate stolen resources, the expectation that they buy their own work and prove its provenance is onerous and frustrating.

What Tes Education Resources Can Do:
– Have a long-term aim to demonetise the site and subsidise it, to enable an entirely free sharing platform for those working in education.
In the meantime:
– Improve checks on resources to identify plagiarism and/or copyright infringement.
– Allow for full download with retrospective payment, rather than asking people to buy resources simply to check for copyright infringement.
– Enable reviews of paid content without purchasing – so that copyright infringement which is clearly evident in the preview pane can be challenged in a review.
What you can do:
– Avoid downloading from Tes Education Resources until the long-term aim (above) is fulfilled.
– Use your Social Media account to inform your followers that you are doing this.
– Share your resources through Dropbox and any other suitable medium.

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