The Path from Rickney Bridge

Every Tuesday and for as many years as I can remember, we’ve driven north from Eastbourne, through the village of Hankham to the bridge at Rickney. It’s not far but it’s a very different landscape from the part of Eastbourne in which we live. In those few short miles, we travel from the edge of the South Downs National Park, with its rolling hills and valleys, to the flatlands of the Pevensey Levels. Although just to be clear, we don’t live in the National Park, we live in a rented house in what might once have been called a council estate that lies at the foot of the scarp at the eastern edge of the park. The only thing we could afford to rent in the South Downs National Park, would be a space to pitch a tent. But as I was saying. Every Tuesday, Mikey puts his two cameras in his pocket and we head north so that he can do his work, taking photos at and around the bridge at Rickney.

It’s pretty muddy at this time of year so I help Mikey to put on his Wellington boots before he bounces out of the car to take a photograph of the cow-sign that stands next to the bridge. He’ll have taken thousands of photos of the cow sign at Rickney Bridge and I used to think that the pictures were all the same.

While he’s doing that, I bash my boots together, to shake off the mud that had dried onto them after our last visit, before sitting down onto the back of the car so that I can pull them on. Then I ask him what direction he wants to go and most times he wants to do the walk that’s next to the “river”, that at this part of its course is called Yotham. It’s a strange name for a stretch of river.  Apparently, it’s a different spelling of the Hebrew word Jotham that means God is perfect and complete, and you have to wonder how and why it got that name. Maybe once a long time ago somebody stood in a field at that place where three streams come together and, in that moment, for them, god’s work was complete.   

And so at least a hundred years later my autistic son and I open the gate and begin to head North across the fields at Yotham. It’s still beautiful, to our left the river and to our right, fields separated by small streams and banks of reeds, but since it was named, they’d have built the weir and the pumping station and probably raised the banks to reduce flooding but as I said it’s still beautiful and I say as much to Mikey and he agrees.

We move on and soon we’ve reached the first gate. It’s always muddier at the gates and Mikey nudges me toward a large puddle, more mud than water, whilst at the same time telling me to be careful and “don’t get stuck in the mud”. Which I often do and laughing he’ll take photographs of my boots calf deep in the stuff.

After the first and then the second gates it’s usually less muddy and we’ll continue on the path next to the river as it curves in a North Easterly direction. In the Summer Mikey will be scouring the surface of the water looking for signs of fish rising. “Sounds like fish” he’ll say and if he’s lucky he’ll be able to photograph them as they feed. But today it’s far too cold for that and anyway much of the surface of the river is covered by Pennywort or “weeves” as Mikey calls it.  “Too many weeves,” he says, “we need to call the Virament Agency” and I agree.

For a long time, we would turn back at the third gate, were Yotham meets Hurst Haven, but for a while now we’ve been going further. In fact, one warm day last year he wanted to keep going to see where the path led and we ended up walking the length of Hurst Haven as far as New Bridge before heading back along the road past Horse Eye Level, which, by the way has nothing to do with a horse’s eye. Apparently, eye is an Old English term for island, a reminder that seven or eight hundred years ago much of the Pevensey Levels were saltmarsh and in the first century AD when the Romans landed and began work on the first castle it was a bay and still connected to the sea. At that time small islands would have dotted the shallow bay and the land on which we had walked. But this day we didn’t make it that far, its hard going walking through mud so eventually we turn around and begin to head back toward the car.

It’s on the walk back that Mikey is most apprehensive, and you can see him looking carefully for people walking toward us with dogs. He’s not a fan. It’s why he prefers it if there are sheep in the field because knows that if there are, then the dogs will all be on leads. If they are not, we have to wander away from the path in order to let the dog and their owner pass. Today we go to one our favourite spots for avoiding dogs, next to a field with cows in it. “Daddy and Mikey are hiding by the cows”, he comments, as the cows gaze at us, with that mix of interest and indifference that they have, as if wondering what we are doing, whilst at the same not caring a jot.

Once the man and his black dog have walked past, we return to the path and continue on our walk back. The wind is picking up and Mikey points to the sky, “Dark cloudy’s coming ” he says, “Uh oh” I reply and head down he trudges through the strengthening wind and spitting rain and as the shower hits us, he lengthens his stride and I struggle to keep up.

The shower passes and eventually we get back to the car and I lift up the boot and we sit on the back having a drink. Mikey greets passing strangers as if he’s welcoming them to our home. “Hello you two”, he say’s to a couple as they cycle over the bridge – “It’s Daddy and Mikey”. He does this a lot and sometimes people will look straight ahead and pretend they haven’t heard anything, but more often than not they’ll smile and wave and say hello. And after they’ve gone, we sit there in silence, watching the branches and the birds. And in that moment, there is peace, and I think I understand why they called it that.

Sajid’s speech and owning the risks and responsibilities of health and social care reform

In his speech to the recent Conservative Party conference Sajid Javid the Secretary of State for Health and Social Care said:

The state was needed in this pandemic more than anytime in peacetime. But government shouldn’t own all risks and responsibilities in life. We as citizens have to take some responsibility for our health too. We shouldn’t always go first to the state. What kind of society would that be? Health – and social care – begins at home. Family first, then community, then the state. If you do need support… we live in a compassionate, developed country that can afford to help with that. There are few higher callings than to care for another person.

It’s a quote that came in for a lot of flak and humour on social media but in a certain way he’s right, health and social care does always begin at home and in our communities, but his speech was worrying on a number of levels not the least of which was the fact that it did a huge dis-service to the millions of unpaid carers who weren’t mentioned and whose quiet work contributes billions to the UK economy and more importantly to the quality of the lives of their loved ones.  Unpaid carers who also played and are still playing an enormous and largely unacknowledged role in helping the country to cope with the pandemic

But in a speech that repeatedly focused on a desire to reform health and social care, perhaps the most worrying thing was the insight that it gives us into how he understands the relationship between the state as a provider and commissioner of health and social care and the people. The Secretary of State appears to think that the role of the state in health and social care is separate from people’s homes and communities and an option of last resort. The state is a backstop, something that gets involved when all other options have been tried and failed. Indicating an approach to reform that is likely to be driven by an outdated and ideological conception of the relationship between the state and the individual, one that is rooted in the notion that individuals and states are opposites, and that one symbolises freedom and responsibility and the other taxation and big government.

The reality is often far more complex than that. For most of us, some measure of state involvement is a part of our everyday lives and for those with health conditions and disabilities and whose lives exist at the juncture between family, community and state, Javid’s speech gives us an early indication of his direction of travel as Secretary of State. It also gives an early indication of a failure to understand that the key to successful reform of the health and social care system isn’t going to be a question of one then the other – of home, then community then state or of individuals taking responsibility for their lives or not – it is a question of timeliness and seamlessness. A question of the state, the community and the family being able to intervene and support each other at the moment at which it is most likely to make a difference. When intervention is most likely to prevent ill health and most able to support an individual in their homes and in their communities. And perhaps most importantly for a government minister, when the action of the state is most likely to be an effective use of a government’s resources and people’s taxes.

Despite what the Secretary of State appears to think, effective state action isn’t something that can be imposed in isolation. As the example of inpatient hospital provision for autistic people and people with learning disabilities illustrates – without the support and involvement of individuals and families the intervention of the state is invariably crisis driven and because of that it is often ineffective and unnecessarily costly. Every year hundreds of millions are spent on crisis provision that is too often of poor quality and as repeated reports have made clear it is often damaging and in breach of the individual’s human rights. As the Health and Social Care Committee has stated:

The poor treatment of autistic people and people with learning disabilities has been a long-standing problem for the NHS and care system. A now notorious example of this was exposed by reports and investigations into the Winterbourne View hospital which took place in 2011 and the fact that these issues have not been resolved even a decade later is a scandal in its own right, quite separate to the original tragedy. Although successive governments and NHS England & Improvement have focused on supporting autistic people and people with learning disabilities from Winterbourne View and many other institutions to live independent and fulfilled lives in the community, there remain over 2,055 people in secure institutions today where they are unable to live fulfilled lives and are too often subject to treatment that is an affront to a civilised society.

Health and Social Care Committee Report – The treatment of autistic people and people with learning disabilities

Not only is the treatment of autistic people and people with learning disabilities who are in crisis sometimes “an affront to a civilised society”, it is also an ineffective use of government money. In a briefing paper submitted to the Health and Social Care Committee and drawing on published data, I estimated average per capita living costs for people with learning disabilities of  

  • £80,397 for people living in residential accommodation
  • £38,699 for people living in supported living
  • £13,082 for people living with family or friends (This would be a maximum figure if family and friends are allocated the whole of the direct payments budget)

This compares to the average cost of an inpatient hospital support package of:

  • £214,230 identified by the National Audit Office for the year 2013-14

Mark Brown – Support in the community – what we know about costs.

It is clear that the greater the level of state intervention, the greater the cost. And the more successfully people are able to live in their homes and in their communities the better the return there is on government expenditure. Yet despite this, people with learning disabilities and autistic people who are struggling and in danger of going into crisis repeatedly complain of being unable to get support for themselves at home and in their community. In this context the separation of home, community and state that exists in Sajid Javid’s mind is real and it is not only counter-productive and ineffective it is also fiscally irresponsible.

This lesson is not only valid for people with learning disabilities and autistic people it is equally valid in a range of other areas from mental health to diabetes and cancer. Early intervention improves lives and it saves money. The ability of the state to target support and intervention early, in the family and in the community, has to be at the centre of any reforms to the health and social care system – because as is so often the case – if it isn’t, it won’t be government ministers who’ll be owning the risks and responsibilities of things going wrong, it will be us.

The Hartheim Statistic and the strategy of indecent delay

Or what democracies have learnt from the Nazis about saving money on the care of disabled people.

In June 1945 an American officer investigating activities at the Hartheim death camp in Upper Austria broke open a strong box containing a 39 page document. That document included a monthly breakdown of the activities of the 6 death camps involved in the National Socialist government’s so-called “Euthanasia programme” Aktion T-4. Part of the breakdown was an estimation of what the National Socialist government had saved itself in murdering over 70,000 disabled people. This figure of 885,000,000 Reichsmark came to be known as the “Hartheim Statistic”. And just to give an idea of the amounts that we are talking about. In 1942 at an exchange rate of 10 Reichsmark to the pound this would equate to approximately £88,500,000 which is approximately £4,277,319,084 in today’s (2021) values.

It shouldn’t surprise anybody that civil servants and politicians attempt to attribute an economic value or cost to their actions and choices, however there are few governments in the world that would emulate the actions of the Nazis and their decision to save themselves money by actively murdering disabled people, including children. But the reality was that even the Nazis had problems getting the public to accept what it was doing to disabled people. By 1942 the official Euthanasia Programme – Aktion T4 – had to come to a close. This was largely as a result of the actions of the Catholic Bishop Clemens von Galen who had spoken out against the killings in his sermons as well as groups of incredibly brave German citizens. Whilst the bishop’s high profile protected him from being incarcerated in a concentration camp or killed, most Germans who spoke out against the National Socialists, such as the Scholl siblings, would eventually pay for their resistance to National Socialism with their lives. But in this instance, together they were successful in stopping Aktion-T4.

It was one of the few times during the Third Reich that public protest was able to change government policy. However, despite a public end to the “Euthanasia” programme, the Nazis continued to murder disabled people in secret until the end of the war. They had learnt that if the state wanted to save money on the “care” of disabled people it had to do it quietly, so the Euthanasia programme went quiet. This was often done through a combination of active and passive means, such as drugs, deliberate infection and the withdrawal of food and the living conditions needed to sustain life.  

Whilst the active eugenics of the Nazi’s is clearly condemned across all civilised societies, the idea that disabled people represent an unreasonable financial burden on society is an idea that has persisted. And the strategy that the Nazis employed toward the end of the war – that of failing to provide people with the means to live healthily – as an effective means of shortening their lives – is a lesson that has not been lost on non-authoritarian forms of government.

Before I take this argument any further, I should just like to point out that it’s not always helpful to make direct comparisons between the actions of non-authoritarian democratically elected politicians and the National Socialists of Nazi Germany. National Socialism, its leaders, its supporters, and those who simply accepted it were ultimately responsible for an unimaginable number of deaths, for genocide, for systemic torture and untold human rights abuses. When viewed as a whole, even at their worst, no modern democratically elected government comes anywhere near the injustices and barbarity of National Socialism and Fascism.

But the “success” and effectiveness of National Socialism never really came from its coherence and integrity, it came from its ability to incorporate popular sentiment and resentments into sets of ideas and beliefs that people would see as common sense and reasonable. These sets of ideas emphasised the importance of national identity and nationalism, the need for a strong and powerful state, control of the media and disinformation and the stigmatisation of minorities and groups who were deemed to be a threat to the national majority. And it did this with a level of state violence that most of us would find difficult to imagine.

It is sometimes useful (although not always) to distinguish between the ideas and values of National Socialism as an ideology and the incarnation of those ideas in Nazi Germany. Because whilst Nazism may have been violently expelled to the political margins by the sacrifices and struggle of millions, over recent years it is becoming increasingly clear that many of the ideas and beliefs of National Socialism are being reworked and reincorporated into our everyday politics and culture. Sanitised for a new electorate but more insidious and in some ways a greater threat to the values that underpin democracy than a battalion of brown shirted thugs.

So, for example we see that “populism” – the practice of incorporating popular sentiment and resentment into policy – has re-emerged as the pre-eminent strategy in our politics. In the UK, our problems are all now the fault of the EU and of immigrants, in Poland it is the judiciary and in Orban’s Hungary you can add the LGBT community to the list of the resented and stigmatised. But the re-emergence of far right thinking and its incorporation into mainstream politics extends beyond the stigmatisation of minorities, the circumscription of rights and the creation of faux enemies, and it is often done in a way that makes it difficult to distinguish from the politics of reason and decency.  Nowhere is that more evident than in the support that democracies offer to older and disabled people.

For modern democracies the cost of providing support to older and disabled people represents a significant proportion of any government’s spending and the opportunities for savings offered by not having to provide support should not be underestimated. Governments of all persuasions are aware of this. They know that delaying policy and action saves money, and they also know that delaying policy and action can cost lives and it is this moment that distinguishes normal politics from the reworked National Socialism of the New Right. Not acting to save money is a reasonable and defensible policy choice, not acting when you know that your inaction will cost lives is something far more sinister. Because for the New Right, the state’s role in protecting the well-being of older and disabled people should be minimal, regardless of the human cost.

In many respects the situation is at its worst for people with learning disabilities. In the UK for over twenty years, we have known that people with learning disabilities are dying far younger than their peers and for over twenty years governments have postponed and delayed acting meaningfully on this knowledge. Because they know that fixing the problem would involve massive investment in the way in which people with learning disabilities are able to live their lives and a revolutionary transformation of the way in which the healthcare system operates.  

At some point in those twenty years the delay in acting on the premature deaths of people with learning disabilities went from a reasonable and perhaps understandable delay in developing policy to something indecent, something deliberate, something that weighed the lives of people with learning disabilities against the cost of preventing their premature deaths and decided that they weren’t worth it.

But these life and death choices go beyond the lives of people with learning disabilities. The failure of successive Conservative governments to develop a coherent and funded plan for social care, and their repeated failure to develop other high-cost policies relating to the health, care, support and needs of disabled and other vulnerable people is not accidental – it is strategy – a strategy of indecent delay.

Up until recently, it hasn’t always been a strategy of the government, but very much one of the far right of the Tory party which has known that blocking action minimises the role of the state and saves money.  And if it costs the lives of older and disabled people then that is a price that they have been willing to pay, or at least let others pay. Now inaction has become the go to response to any of the challenges that this government faces – delay and save money irrespective of the consequences.   

It seems clear to me that this government’s strategy of indecent delay and the ease with which it will balance lives against cost – in particular as it relates to disabled people – draws on a key element of National Socialist thinking. Namely that disabled people are a financial burden on the state and society and that steps should be taken to minimise that burden. Whilst in the aftermath of the Euthanasia Programme the Nazis were able to reduce the cost to the state behind the closed doors of their camps, the strategy of the New Right is far simpler – you do nothing because doing nothing leads to premature deaths and that saves money. And then when people realise what is going on – you do next to nothing, write a report, and carry on.

The statisticians of Hartheim would have been proud.     

Threads of time

If you drive north from Vienna through the rolling plains of Lower Austria toward the Czech border, after about an hour you get to the town of Mistelbach. It’s over 40 years now since I’ve been there, but I always remember the golden fields of wheat and barley that we passed on the way. It was long before Austria joined the European Union and a good while before the Iron Curtain fell. It’s hard to imagine it now – Europe divided by barbed wire fences and machine gun posts but I remember them. We were on our way to my girl-friend’s parent’s house in the country. It wasn’t in Mistelbach itself but a small village nearby. I can’t remember the name, but I do remember the house and I remember that he was building it himself.

Her father, who we’ll call Herr Schmidt, was a master joiner who seemed to work all the hours of the day and a few more. He’d get up at four in the morning to go to the market to buy fruit and vegetables for the small convenience store that he and Frau Schmidt ran in Vienna’s 6th Bezirk. When he’d done that, he’d go and do his main job as a joiner until early evening when he would return to the shop to do the evening shift. When he’d finished, he’d go home and have his dinner and by 9pm he’d be in bed. At the weekend – which was probably just Saturday afternoon and Sunday – they would all leave for their home in the countryside where he would continue working on the house.  

By the time that I got to see it, it was almost finished. It stood in its own small orchard of apricot trees, had a pool and at least three, if not four large bedrooms and two kitchens. One in the cellar for the summer when things got too hot. I remember being impressed and I loved the pool and the orchard and the underground kitchen. I was by the pool when I first met her grandfather, Opa. He was wearing a blue farmer’s overall, and he seemed very old, and frail and I remember him shaking. She said that he’d fought in the war and had been taken prisoner by the Russians and hadn’t ever really recovered from it. Or was that her other grandfather, I can’t really remember, I know they’d both fought and at the time I’d not thought about it much. I was young and in 1979 the war already seemed to be ancient history. But now, I know that thirty-four years is no time at all, and I sometimes wonder what their stories were and where they might have stood in the turmoil that was Austria in the late 1930s and early 1940s.  

At the time I had no idea whatsoever about what had happened in Austria during the war. I guess I presumed that Austria was just another one of Hitler’s victims, but its story is far more complicated than that. The role that Austria and some Austrians had played during those dark years was very different to that played by the citizens of the other countries that had been conquered by the Third Reich. In 1938 for a great many in Austria National Socialism brought stability and jobs and as long as you kept your head down and you weren’t a Jew, or a gypsy or disabled, it brought security – at least for a while. But for people who were different or who resisted, it brought terror. I knew nothing of that then and I knew nothing of what had happened to children and people with learning disabilities. And if I had, if I’m honest with myself, I might not really have cared beyond platitudes.

It would be another 14 years before the first of my own children would be born and a couple more before people would begin to use the word “autistic” when talking about them. One day a paediatrician would use the term “Asperger’s” when referring to my eldest, I didn’t know then that it was a word that was intimately linked to Austria’s war and the role that some would play in the killing of disabled children. And nor did I know then that my youngest would be born with severe learning disabilities and that I would one day be grateful that he hadn’t been born in another place and at another time.

But none of this was in my mind as I stood by the pool in the house with the orchard, looking at the old man in the farmers overalls as he stared at me. Because the threads of time and place and identity that would one day connect me to the actions of the National Socialist Euthanasia program were still hidden.

Invaders and Immigrants

I walked from home through the housing estate at the back of our house and up over the chalk scarp that encompasses the western fringe of the town in which I live. It’s steep and a hard way to begin a walk but there is something cathartic about it. In fifteen minutes, you can go from town to country, from a preoccupation with the everyday to the brow of a hill and the broad vistas of the National Park.

As I headed West toward the next valley, I was struck by the contrast in how I feel about the land in which I live and the current political landscape of our nation. In so many ways this really is a green and pleasant land, but like so many beautiful countries sometimes it can also be something else.

A couple are cycling up the bridle path using electrically assisted bikes – and I don’t blame them it’s a brute of a hill – we smile and greet each other, fellow travellers on a country path, each re-assuring the other as we pass. It’s such a small thing, greeting strangers on a country path, but it has always struck me how kind we can be at times. It’s easy to forget that we can be.

I branch off on a path that crosses a farmer’s field. On the chalk it cuts a grey and white furrow through the green. For a while there is a certainty and a definition in the direction that the path takes before it reaches the brow and curves down into the valley beyond. As I walk, I wonder about that and how often we look for certainty in life and especially in our identities? We define ourselves with certainty by our nationalities, our ethnicities, our disability, our gender, our sex, our politics, our professions, and our roles. And the more uncertain the times the more desperately we seem to grasp at the idea that our identities are concrete when in truth there is little certain or definite about any of these things.

By now I’ve reached the village in the valley beyond and approach the church where the villagers used to shelter from marauding Vikings. I stop for a moment at a rare water standpipe to top up my bottle. Listening to the wind as it rustles against the leaves, it is easy to imagine the lost voices and the stories of those who have passed this way before me. The frightened villagers sheltering from Vikings; or frightened Protestants hiding from Catholics prior to the Reformation and the frightened Catholics hiding from Protestants in its aftermath – traces of change and history in the land and in breeze.

For a while now I’ve been wondering about my own identity. Genetically it would seem that I am a descendent of these islands. In almost equal parts English, Irish and Scots. Perhaps a Briton in an old sense of the word and if not, perhaps a descendent of those who lost their nation at Hastings. Maybe that is why I have such little time for those who’ve run this country for hundreds of years. People who claim “Englishness” from the vantage point of their historic Norman privilege, an aristocracy and a class whose ancestors took this nation from the people who came before.

I put my water bottle back in my rucksack before continuing up another steep path into the fringe of the forest. The leaves of the trees have begun to turn from green to yellow and gold, and there’s a damp Autumn mustiness in the air. At the top I stop for a moment and consider my route. I decide to head North, out of the forest along the ridge of the Down.

It’s always windier and wilder up here. In town, Autumn is something that we experience looking out the window, or in short walks between places or in journeys in the car. But up here Autumn is something far stronger than that. The darkness in the clouds can turn an afternoon’s walk into a genuine struggle, if not for survival then for comfort and home. But the sheep I pass seem oblivious to that and to me, and the path curves in a westerly direction as I approach Wilmington Hill. From there I can look North West and see the line of hills now disappearing into a haze of rain. Or I can look South over the forest and the Cuckmere River meandering between the hills and down toward the sea. But this time I look North toward the Weald.

Despite the rain I can make out the Church at Wilmington. It’s one my favourites. I love the peace and the tranquillity of so many of Sussex’s rural churches but this one is special because of its tree. An ancient Yew that would have been a sapling when the Romans were here. A tree that was already old when the Normans built the church and when the Benedictines built their Priory.

I wonder how many of those currently committed to the cause of English nationalism really understand what being English – or Englisc to use the original Old English term – really means. It strikes me that few will know that in the aftermath of Hastings, England ceased to be the land of its people and became the property of the Conqueror, who parcelled out land and estates to his relatives and supporters. The land around Wilmington that I was looking down on was one such gift, given to the Conqueror’s half-brother Robert, the Count of Mortain. All held in the name of the king of course.

In the years that followed the conquest of England, the English were subjected to what would now be referred to as a genocide, and to assuage their guilt the Norman nobles and their families would gift land to the Church in an effort to ease their relationship with God. The land on which the Priory at Wilmington was built was given to the Abbey of Grestein in Normandy, who would retain possession of it until 1414 when Henry V suppressed all of the “alien” religious houses. For hundreds of years after Hastings “England” was not a nation of Englishmen, it was a stolen identity and a plaything of the Normans and some of the divisions within this country that were created then, persist to this day.

But of course, those who came before the Normans might have been “Englisc”, but they weren’t really British either. They were the descendants of other invaders- Saxons and Angles and Danes and Norwegians who in turn had taken this nation from the Romano-Britons who had ruled for hundreds of years before the Anglo-Saxons had arrived on these shores – and we all know where the Romans came from.

I think again of that ancient Yew, that has survived the reigns of all the Kings and Queens of England and it strikes me that there is a pointlessness to this. We might like the idea of our identity being rooted in the history of our nation but if you go back far enough there is no certainty to be found in that, beyond being able to state that we are all of us the descendants of invaders and immigrants.

The rain is getting worse, it’s time to head home.

The Industry

The Bridge at Rickney copyright Mikey Brown
  • Easy Summary
  • In this blog I argue that lots of people are able to make a living out of people with a learning disability
  • All the money helps to create jobs that allow people to feel good about the work that they are doing;
  • Which is kind of ok but…
  • The thing that is wrong, is that people with learning disabilities aren’t given the same chances;
  • Only 6% of people with a learning disability who get social care have got a paid job ;
  • Organisations should change the way that they work and employ more people with learning disabilities;
  • If you give people more opportunities maybe they would need less support;
  • This isn’t just the government’s fault.

There is an industry that sustains itself on the lives of people with learning disabilities and some autistic people. It provides tens of thousands of jobs and it gives people careers and opportunities for personal development. Those careers can be in government, in charities, in consultancy and in social work, they can be in care and in health, they can be in academia and in the legal system and journalism. The lives of people with a learning disability are a world of opportunity and there are awards to be won and money to be made.

There is also meaning and fulfilment. How many people working in the sector nurture their own mental health and status with the feeling that they are trying to make the world a better place and that their labour benefits the lives of people who are less fortunate than them, or less able to fight for themselves. We might wrap our post-Victorian benevolence in the language of rights and campaigning rather than goodness, but the underlying need to find meaning in the struggles of others is the same.
And actually, there is only one thing wrong with any of this. After all, people need to make a living and we all need to find meaning in our lives, the problem is that very few of these opportunities are available to people with learning disabilities. The billions of pounds that are spent in the Learning Disability Industry are there for the careers of others, they are not available to people with learning disabilities themselves. In 2017-18 only 6% of people with learning disabilities in receipt of long-term social care support were in paid employment and most of those were working less than 16 hours a week.

As a young person with a learning disability and many autistic people approach adulthood – where is the hope of a job, of love and a home of your own? Where are the career paths in large organisations? Where are the BBC journalists with a learning disability? Where are the charity executives? Where are the paid researchers? The best way to support somebody’s mental health is to give them opportunity and from that hope. But rather than employ people with a learning disability, organisations will recruit therapists and support workers to provide support to people who are struggling because they can’t get jobs and they can’t find their place in the world.

You might think that a job couldn’t be performed by a person with a learning disability, that the job is too technical, too literate, or too managerial. But no organisation that involves itself in the lives of people with a learning disability can function without the knowledge and insight that only people with a learning disability can provide, but how many of those organisations are paying for that knowledge and expertise? How many have structured their employment to allow for paid collaborative co-working. Or are they merely involving, consulting, or working in partnership with people with a learning disability? If your “colleague” or “partner” isn’t being paid, they aren’t really a colleague, are they?

And if you are paying for the knowledge and insight that only a person with a learning disability can bring – are you paying enough? Is there an opportunity for employment and career development? What ways of working does your organisation need to change in order to make the employment of a person with a learning disability possible and what systems need to be put in place in order to support the needs of the employee and the employer?

A lot is made of the discrimination that people with a learning disability face and the impact that it has on their mental health. And we campaign bitterly, arguing that it’s the government’s fault, and some-times it is. But not always, sometimes it’s everybody.  

Scapegoat


The #EveryDeathCounts legal action began when the government said it would only publish information about people with a learning disability who are dying from Coronavirus once a year.

I was originally part of the #EveryDeathCounts legal action but I left on the 10th of May

This week the legal action ended.

In this blog I talk about people who have been blaming (scapegoating) Simone Aspis for the failure of the #EveryDeathCounts legal action

I disagree with the people who are saying this

I argue that the legal action failed because the #EveryDeathCounts team didn’t believe the government when it changed its mind and promised to publish information about people with learning disabilities dying from Coronavirus.

The government kept it’s promise.


 

A couple of days ago three of the people who had launched the #EveryDeathCounts legal action – George Julian, Sara Ryan and Mark Neary – published their final report on the action and why it was coming to a close. In it there is a paragraph in which they talk about the team involved in the action.

This process has been a strong learning curve for the claimant team which has involved rocky roads. Early on original claimant Mark Brown withdrew leaving a team of four which soon became split due to differences in views and opinions. These differences spilled over Twitter publicly, via Direct Messages and email. This was intensely wearing and drew in other allies who were working to try to improve the collection and publication of data around the deaths of learning disabled and/or autistic people. Prof Chris Hatton, a central academic and activist figure, eventually left Twitter.

This experience raised questions around boundaries, what is considered to be acceptable behaviour (by whom) and the effective silencing that can happen when a person continues to personally attack others unchecked.

There is no reference as to why I left the action despite being one the people who instigated it. Which is understandable. But in this section and others the impression is given that some of the responsibility for the project’s difficulties lay with the fourth member of the “team” Simone Aspis. By the time that Simone had joined the action I had left so I cannot comment on how easy or difficult she may have been to work with. However, what was clear and unedifying, was that in the aftermath of the publication some people on social media were blaming Simone for the action’s failure.

You have bullied and harassed good people. I’m sure there were many reasons this failed but I feel that your behaviour was a contributing factor.

Why does ‘one person’ stick around like glue & try to hinder attempts to make humanitarian progress?

None of which is fair or helpful because whatever difficulties the team may have had, the legal action failed because the government had significantly undermined the justification for it – before it had launched its fundraising campaign on the 11th of May. In particular Stephen Powis’ response to Shaun Lintern’s question made during the government press conference on May 8th

Shaun Lintern – “Why has NHS England not published the data it receives on a weekly basis about the deaths of people with learning disability and autism from Covid-19?…  …Will you commit NHS England to publishing that data?

Professor Stephen Powis – I can commit that we will publish that data…

and

…from next week we will be publishing data on people with learning disabilities, autism and mental health patients who have died in acute hospitals and we will do that on an ongoing basis.  

The government would start publishing the data 10 days later.

In the days following May the 4th when Rebecca Thomas had reported the government’s original indefensible position – that according to NHSE, data “on people with learning disability and or autism who’ve died from suspected and confirmed Covid19 will be published in the annual LeDer report” –  it was clear that the government had changed its position significantly. Not only as a result of the Powis statement but also because there was increasing evidence that the government was taking steps to improve the quality of the data that it was collecting about Covid-19 as part of the Mental Health Dataset. Evidence that I shared with the team on May 10th.

The root of the failure of the legal action lay in its failure to acknowledge and accept the government’s changed position before launching it’s fundraising campaign, not in the actions of Simone Aspis. No amount of scapegoating will change that.

Preventable Deaths? Covid-19 and the First Deaths of People with Learning Disabilities in England.


  • In this article I write about the deaths of people with a learning disability and some autistic people at the beginning of the Coronavirus pandemic;
  • I have argued that politicians must not use politics as an excuse for not sharing information about Coronavirus
  • And that we need to learn quickly from history and the information that we have;
  • Then I use the example of what happened to people living in asylums in 1918 to show why sharing information and learning quickly is important;
  • I then go on to look at the information we have about what is happening to people with a learning disability and some autistic people during the Coronavirus pandemic;
  • This tells us that at the beginning of the pandemic a lot more people with a learning disability died than we would have expected;
  • But by the middle of June the number of people with a learning disability who were dying was closer to what we would have expected;
  • I finish by asking the government, the NHS and the CQC to work with people from across the whole community to make sure that fewer people with learning disabilities die from the Coronavirus in the future.

 

One of the things that we’ve heard a lot of during the Corona Virus pandemic has been the frequency with which scientists and politicians have used arguments about the need for robust data to justify not publishing the data that they’ve got. On the surface it might seem like a reasonable thing to state but too often when you dig beneath the surface of a refusal to publish, most of the genuine reasons for not publishing are political.

The reality about dealing with something that is unprecedented is that very little of the data that is available is robust.  The thing about robust data is that you have to have systems in place in order to collect it. These systems have to ensure that the data is measuring the right thing and that it’s reliable and valid. They also have to be tested and quality assured before anybody can make judgements about whether or not the data that is being produced is accurate. It all takes time and one of the things that people have very little of, in dealing with a crisis like this, is time.  Which is why transparency about the data that is available is so important. Over time the quality of the data and information that is being developed will improve but history teaches us that at the start of things, transparency and the real-time development of insight into what is or may be happening is crucial.

Extraordinary Deaths

A while ago I read a paper by J M Cramer entitled Extraordinary Deaths of Asylum Inpatients During The 1914-1918 War (Crammer, 1992 ). It was originally published back in 1992. Essentially it tells the story of the rising death rate in asylums during the World War I, looking specifically at the rise in deaths that occurred once the war had started. In his article Cramer tells us that during the period between 1914 -18:

Nationally, in the 97 pre-war asylums the annual death rate ran steadily at about 10 per cent to 11 per cent of the resident population. In 1915 it was already 12.1 per cent, in 1916 12.6 per cent, in 1917 17.6 per cent, in 1918 over 20 per cent and then fell back to its old level in 1919 and 1920.

At first glance and with the benefit of hindsight we might be tempted to think that the higher numbers of deaths in 1917 and 18 would have been caused by the flu pandemic but Cramer’s analysis of the causes of death indicates that this was not the case.

Deaths per Thousand

As you can see from Table 1, in 1918 flu was responsible for a relatively small proportion of the deaths and the variation in the numbers of deaths per thousand for different asylums indicates that practices across different asylums had significant impact on the numbers of people who died within individual asylums.  This variation is reflected in detail’s that Cramer provides on the reduction in the number of calories that people living in the asylums consumed during the war, a reduction that made them particularly vulnerable to the ravages of tuberculosis.

All of this analysis was done long after the war had ended but had it been done at the time, steps could have been taken to change policy and to hold poorly performing institutions to account – in short to save people’s lives. Unfortunately, the government of the day had other priorities and as is so often the case disabled people and the poor are almost invariably at the bottom of the list. This is why the real-time development of insight into how policies are actually being implemented is so important.

So, what is and has been happening to people with learning disabilities and autistic people during the Corona Virus Pandemic?

The short answer is that it has been difficult to tell because getting data out of the government has been like getting blood out of a stone. Initially NHS England announced that it only intended to publish data on the deaths of people with learning disabilities and autistic people on an annual basis as part of the Learning from Deaths Programme (LeDeR). In the context of a national crisis and pandemic, this lack of action and transparency was met with outrage and the threat of legal action on the part of some, including me. As often seems to be the case during this pandemic, the government changed its position and soon after began publishing some of the data that it has on the numbers of people with learning disabilities and autistic people who are dying of Covid-19. It was at the point at which they committed to this that I withdrew from the legal action.

Despite those commitments, what has become clear in the weeks that have followed is that the government has still published very little data that relates specifically to the effect that the virus is having on people with learning disabilities and autistic people. Probably just about enough to make a successful legal action unlikely but not enough to provide a clear picture of what is going on. At least not enough to make it easy. That we have any idea of what has been happening is very much down to the efforts of Chris Hatton.

In a recent blog (Hatton, COVID-19 deaths of people with learning disabilities in England: a quick update, 2020) on entitled “COVID-19 deaths of people with learning disabilities in England: a quick update” Chris draws on the LeDeR data to tell us that up to the 30th of June 620 people with learning disabilities have died of Covid-19 and that data provided by NHS England on people dying in hospital tells us that up to the same date 512 people with learning disabilities and autistic people have died in hospital with Covid-19. He goes on to argue that:

This dataset also reports the total number of people who have died confirmed COVID-19 deaths in hospital, where flagging information (is the person a person with learning disabilities, an autistic person, or not) exists. From 24th March to 12th May (around the peak of the pandemic), 2.5% of everyone dying in hospital of confirmed COVID-19 was a person flagged as a person with learning disabilities or an autistic person. I tried to argue in the long blogpost that this meant a COVID death rate 4 to 5 times higher for people with learning disabilities and autistic people compared to others. After the (first) peak of the pandemic, from 13th May to 30th June, this has dropped to 1.5%, which is still a death rate 2 to 3 times higher.

At this stage, because of the incompleteness of the data, we cannot definitively state that Chris’ argument that the death rate between 24th of March and the 12th of May was 4 to 5 times higher is correct, but his argument is convincing. If there is any uncertainty it may lie around variation in the criteria that is actually being used in different trusts to flag somebody as having a learning disability or being autistic. However, if we accept the figures as a reasonable estimation, then it appears that in the early stages of the pandemic, people with learning disabilities are significantly more likely to die of Covid-19 than others. But is there any way of looking at the data or information available that would give us an indication as to how and why this may be happening.

Deaths in Care

At the beginning of June, the CQC (CQC, 2020) published data on the number of deaths of people with learning disabilities, “some of whom may also be autistic” in care settings. From that data we know that between the 10th of April and the 15th of May – 206 people with learning disabilities died from confirmed or suspected Covid-19. The CQC does give us a breakdown of how many people with learning disabilities during the period died in residential homes (195) and how many died in community settings (184) but does not break this down to tell us the proportions who died from Covid-19. This is an important omission as it would provide us with an insight as to whether or not the type of setting in which somebody lives has made them more or less vulnerable to the virus.

If we look at the data in Graph 1 which shows the data that LeDeR (NHS (LeDeR), 2020) has provided we can see that the peak of this stage of the pandemic

Graph1

corresponds with the week ending the 17th of April, the same week in which the government first introduced testing for all people being discharged from hospitals to care homes and care home residents who were symptomatic (DoHSC, 2020), and three weeks after the introduction of the lockdown on March the 23rd and over a month since the government had moved from a strategy of containment to delay.

A Changing Death Rate

By comparing the number of deaths of people with learning disabilities per week (NHS (LeDeR), 2020) to the total number of people who died from Covid-19 during the corresponding week (Graph 2), we can see that during the very early stages of the pandemic, the proportion of people with learning disabilities dying from Covid-19 expressed as a percentage of the total number of people dying was actually as high as 5.38%.

Graph 2

If we accept Chris Hatton’s argument (Hatton, 2020)  that hospitals are using GP registers to flag people as having a learning disability and nationally GP registers report 0.5% of the population as having a learning disability, then at the very beginning of the outbreak people with learning disabilities accounted for a hugely disproportionate number of deaths – almost 11 times the rate we would expected if people with learning disabilities were dying at the same rate as the general population.  By the time this phase of the pandemic peaked during the week ending April 17th people with learning disabilities accounted for a little over 2% of the total number of people dying that week – so still indicating that people with learning disabilities were dying at four times the rate we would expect. During May this rate would continue to drop reaching 0.55% of deaths by the week ending the 19th of June. This would indicate that the things that were done or not done during the very early stages of this phase of the pandemic had a disproportionate effect on people with learning disabilities and that later interventions were less detrimental.

It is important to remember that during the early stage of the pandemic we are talking about “relatively” small numbers of people. Up to March the 20th,  10 people with learning disabilities had died in England out of a total of 186. It is possible that this number of deaths could be linked to a single outbreak or region or a single policy action such as the release of people from hospitals into the care sector. At the moment we don’t know, this is however something that LeDeR and NHS England will know.

What we do know is that the first people with learning disabilities to die of Covid-19 will have been infected before the publication of the Imperial College modelling paper (Ferguson N, 2020)  suggesting that the continued implementation of milder mitigation strategies could lead to 250,000 deaths. So during the period when the government was pursuing that mitigation strategy; when it was not tracking and tracing effectively, not testing people who were being discharged from hospitals into the care sector and before the lockdown, people with learning disabilities were dying at a rate that far exceeded the rate that is now being achieved when these and other policies are at least partially in place.

There will undoubtedly be some within the government and the scientific community who will say that it is too early to make judgements about what might have been done differently, and that we need to wait for robust data, formal research and a public inquiry – and they should do all of those things – but they should also be mindful that winter is coming and with it the very real possibility of a second wave of infections. It is vital that the government, the NHS and the CQC are transparent about what has happened and that they work with people from across the community to identify what can be done to prevent yet more people with a learning disability, dying preventable deaths.

References

CQC. (2020, June 2nd ). CQC publishes data on deaths of people with a learning disability. Retrieved from https://www.cqc.org.uk/: https://www.cqc.org.uk/news/stories/cqc-publishes-data-deaths-people-learning-disability

Crammer, J. L. (1992 ). Extraordinary deaths of asylum inpatients during the 1914-1918 war. Medical History, 430-441.

DoHSC. (2020, April 15th ). Government to offer testing for “everyone who needs one” in social care settings. Retrieved from http://www.gov.uk: Government to offer testing for “everyone who needs one” in social care settings

Ferguson N, e. a. (2020, March 16). Report 9: Impact of non-pharmaceutical interventions (NPIs) to reduce COVID-19 mortality and healthcare demand. Retrieved from https://www.imperial.ac.uk/: https://www.imperial.ac.uk/media/imperial-college/medicine/sph/ide/gida-fellowships/Imperial-College-COVID19-NPI-modelling-16-03-2020.pdf

Hatton, C. (2020, July 2nd ). COVID-19 deaths of people with learning disabilities in England: a quick update. Retrieved from Chris Hatton’s Blog: https://chrishatton.blogspot.com/2020/07/covid-19-deaths-of-people-with-learning.html

Hatton, C. (2020, June 2nd ). What we know (so far) about the deaths of people with learning disabilities in England during COVID-19. Retrieved from Chris Hatton’s Blog: https://chrishatton.blogspot.com/2020/06/what-we-know-so-far-about-deaths-of.html

NHS (LeDeR). (2020, July 9th). COVID-19 deaths of patients with a learning disability notified to LeDeR. Retrieved from https://www.england.nhs.uk/: https://www.england.nhs.uk/publication/covid-19-deaths-of-patients-with-a-learning-disability-notified-to-leder/

 

Context is everything


  • In this blog I argue that people’s ideas about what is right and wrong is affected by their situation;
  • I use a Twitter conversation involving Simone Aspis, Chris Hatton and others to show how this sometimes happens;
  • I then talk about why I think that Simone makes some important points and is entitled to say what she thinks;
  • I also say why I think that Chris Hatton’s work on social media has been very important for people with learning disabilities and for universities;
  • In the second part of the blog I argue that social media plays an important role in our society and that researchers like Chris have been very good at using it to share their understanding and knowledge;
  • But in my opinion researchers who use social media well, have not been supported by their universities;
  • I then make some suggestions about the ways that universities could support researchers who are active on social media;
  • I finish by suggesting that we should try harder to be kind to each other.

Context is everything.

I was reminded of this a while ago in a tweet that the self-advocate Simone Aspis had written about academics who write about the lives of people with learning disabilities – I can’t remember the exact wording but the gist of it was that if you write about people with learning disabilities you should always publish an easy read version of your article. It’s a fair point and something that few people who write about the lives and rights of people with learning disabilities actually do and I would very much include myself in that. But like I said context is everything.

In the Twitter conversation in which the point was made the academic in question was Chris Hatton, who I’ve worked with on a couple of projects. Chris had just published a timely blog and analysis about the impact of Covid-19 on people with learning disabilities, and Simone was challenging him on his failure to publish an accessible version of the article, after having challenged him a number of times in previous weeks. Since then Chris has made the decision to leave Twitter.

I don’t know and I’m not really interested in the question of whether or not Simone or anybody else played a role in Chris’ decision to leave Twitter. Simone is one of the country’s leading self-advocates she is entitled to her opinion. But news in the Health Service Journal yesterday that NHS England and NHS Improvement are recruiting people to investigate the disproportionate number of deaths of people with learning disabilities during the Covid-19 pandemic – a month after they had denied the increase in their response to the blog post from Chris Hatton that Simone had complained about – made it clear to me just what a loss Chris’ withdrawal from Twitter actually represents. In my opinion a loss not just for people with learning disabilities and autistic people and their families but also for the credibility of research across the country.

For some of us, especially those of us who retain some commitment to the aspirations of The Enlightenment, one of the principal reasons for doing social research is to try and make the world in which we live a better place, and a key means of doing that is influencing government policy. But social media has changed the way in which government policies are developed. The days of policy being the product of a decade or more’s research and evidence-based practice, are long gone. Policy is increasingly being developed in response to the news and social media agendas and the problem with a lot of academic social research – is the difficulty that universities have in being able to produce knowledge and insight at the time at which it is most likely to make a difference. Which in today’s politics is usually yesterday.

Chris Hatton is one of the few researchers who really knows how to use social media as a platform to deliver substantive knowledge and insight in a form that is likely to influence the news agenda and policy. But like most of the small number of researchers who are active in this way, I suspect that Chris and others like him do so without significant support from the academic institutions by which they are employed. Each working late into the night to produce some of the best and most timely social insight that we are likely to read. Social insight that isn’t funded by government or large institutions – but social insight that is rooted in the concerns and conversations of communities. The problem for people who work in this way is that it leaves them isolated and without support in dealing with the criticism that will inevitably come their way. Criticism that is the essence of social media and something that we all struggle with.

But imagine if it was different. Imagine a university that encouraged its researchers to engage in social media in a way that made their collective body of knowledge and expertise accessible beyond the boundaries of their institution. Such a university might have a very rapid peer review system that allowed their researchers to test their thoughts and ideas before publishing them in a blog. And if that university specialised in researching the views and experiences of people with learning disabilities they would, as a matter of course, have the capacity to produce easy read and accessible versions of articles and blogs produced by their researchers – who they would actively support to engage with social media. All of this would be done as a part of the university’s need to make itself meaningful not just to the governments and organisations that fund it but also the communities upon whose experiences it is ultimately so dependent.

Whether we like it or not social media will continue to transform the societies in which we live and if organisations want to remain relevant they will need to commit to social media in ways that are meaningful and authentic and supportive of their people who engage with it – as for the rest of us maybe we should just try a little harder to be kind – I know I should.

No More Heroes

I’ve lost count of the number of times that I’ve heard our politicians say that their decision-making during this pandemic is being led by the science. As if the decisions that they have made have somehow been inevitable and forced by the nature of the evidence to hand. That is of course rubbish.

All science has competing theories and explanations of phenomena and the natural sciences are no more immune to these debates than the social sciences. This is especially true where scientific knowledge is new and emerging and where the characteristics of something are still unclear. And when you have the kind of situation that we have now, one that requires the bringing together of the natural and the social sciences then the potential for scientific debate and disagreement is enormous, as is the potential for harm.

Today some of us will have stood for a moment to honour the ordinary people who have died doing their jobs during the pandemic. Some of those people will have worked for the NHS, others will have worked in care, or driven buses, or shops or one the many other jobs that we have now come to realise are essential to the proper functioning of our everyday lives and well-being. Many of yesterdays unskilled workers are now angels and heroes, people whose jobs have been made so much more perilous by the actions and failings of others.

Some of those failings were illustrated last night in the BBC Panorama Documentary “Is the Government Failing the NHS?”. The programme raises questions about the range of ways in which the government appears to have failed to protect people working in the NHS – principally as a result of it’s failure to ensure that frontline workers have the equipment that they need in-order to protect them from the virus.

To draw on the wartime analogies that the government seems so fond of. The current situation feels a lot like one of those instances where our troops have been ordered into battle, ill-equipped to take on the enemy that they face. Yet somehow, as has often been the case, our troops manage to achieve some kind of pyrrhic victory or glorious defeat through enormous personal sacrifice.  Except now if you believe our politicians, our heroes aren’t being ordered out of the trenches by generals, they are being led by the science.

Which is disingenuous because there is no single scientific solution to the threat that Coronavirus poses. It is politicians who make decisions about which strategies to deploy and how to use the resources that we have at our disposal. You only have to look at the variation in death rates per million population across the world to see the extent to which political and scientific choices can and will kill people.

By the time that this is over it is likely that thousands of ordinary people will have died doing their jobs so that we can stay well, and as is so often the case the politicians and scientists who could have prevented many of their deaths will wrap themselves in the sacrifice and dedication of others and call them heroes.