Brexit and the Decency of our Identities

I saw the #LondonStays demonstration on Channel 4 News the other night and the thousands of young people who are angry and I can’t say I blame them.

I can remember being young, or at least I think I do. That remarkable sense that absolutely anything is possible and that if you really want to do something you can. That wonderful mix of hope and arrogance that makes you believe that you matter, that your contribution to the world might actually make a difference.

I’ve mentioned it before, but as a teenager I fell in love, learnt German and went to study Geology in Vienna. This all began in 1977 long before Austria had joined the European Union. When it was still economically and politically a bridge between the East and the West and long before the EU and Schengen made travel across Europe as cheap and as simple as it is today.

At the tender age of 17, I remember making my first trip to Vienna by train. I got the route all wrong and instead of having to endure the 24 hour journey from Victoria to Vienna via Ostende, I went for a more scenic route via Paris that took over 36 hours. Unsurprisingly (it was the first time I’d travelled abroad alone) I didn’t have any Francs, dragged my suitcase from one station to another and still remember my horror when I realised that you had to pay to use the toilet at the Gare de L’Est.

For me it was an adventure, a journey across a continent in the middle of a Cold War, still scarred by its recent past. I remember the smoke filled train stopping in the middle of the night at a border, and soldiers with machine guns walking down the train checking passports. On another trip I remember going to the border with Czechoslovakia to look at the Iron Curtain with its guard towers and machine gun posts. I remember visiting the farm of a friend’s grandmother in the south of the country, not far from the border with Yugoslavia and I remember how much she hated the Yugoslavian migrants and how much respect she had for Hitler and the things he had done for the people. Another man who got his country back.

I remember going to the part of Austria that had been conquered by the Russians and discovering that, at the time, most of the young and not so young women had been raped by their conquerors. Have you ever been to a village where you’ve known that every woman over a certain age has been raped? Or where many of the older citizens, both men and women had witnessed or been complicit in unspeakable acts of war and brutality?

I remember my girlfriend’s grandfather sitting on a chair in the garden, shaking, staring at me, yet lost in his past. He never once spoke to me. I remember her father. A working man who rose before dawn and who most days would not return before the sun had set; who built his own home at the weekends; who had been in the Hitler Youth and who, at the age of 15 had been given a gun and drafted into the Volksturm to defend his family’s village.

It’s been a week now since we got our country back, and in the course of that week we have learnt how fragile our unity really is. The seemingly unrealistic idea that our continent could never again fall into conflict, somehow doesn’t seem so absurd any more. The rise of racism is coupled with an inability on the part of most of us to understand the role that our actions have played in feeding the confidence of The Right. And the extent of its roots within the working classes reminds me of another country and another time and another kind of scapegoat.

Thursday the 23^rd of June was an act of political fear and economic self-harm, but it was not the end of the world. Over time and with far better leadership than we are seeing at the moment, we may be able to create a positive economic future for ourselves. We may be able to create a niche within the global economy. An agile player between the ever larger and ever more cumbersome trading blocks and let’s hope for all our sakes that we do.

But what I fear most, is perhaps what the young people of #LondonStays seemed to understand and give voice to. The EU gave us the ability to define ourselves more broadly; not just as British, Austrians, Irish, Italians, French and Germans. We could imagine ourselves as European Citizens, an integral part of a community of peoples. A community of peoples that could struggle imperfectly to leave behind the memories and scars of its wars.

And now for us that is gone and what already seems to be replacing it is an ever narrowing sense of national identity. We are no longer European Citizens, perhaps not even British. We are already becoming English, Welsh, Scottish and Northern Irish. Somehow the country we are getting back is not the one we had. So perhaps the greatest challenge for us now isn’t economic. It’s not even fighting to get back into the EU, it’s the struggle with an insidious political Right and the fight against the rise of racist forms of nationalism. Ultimately it’s the struggle for decency in our identities, for how we imagine ourselves to be. Do we forget the lessons of the past and define ourselves ever more narrowly in a world of threats and strangers or do we imagine ourselves as something new?  Something bolder. A global people in a global age?

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Together

I’ve heard it so often that it has almost become trite – that parents are experts in their own children – and very often we are. But I’m not always sure that the system and those who live by it get that. There is no degree or PhD for what we know. There is no qualification that entitles us to an opinion and respect, just years of never really switching off. Years of listening and watching for words, sounds and behaviour that mark a change, a wish, a need, a pain. The language of our loved ones. There is no dictionary, no formal syntax that we can read just the semiosis of our experience. So often subtle, nuanced and seemingly random we are not experts by experience we are experts in the decision that you are about to make.

The lives and deaths of people with severe learning difficulties can be defined in moments. An instant, a point in time that shapes and changes everything, a decision, a best interest, a judgement or even just a choice. Every time that you make a decision about an adult with a severe learning disability you are only required to involve the views of somebody who knows them well. But how will you know if they lack the capacity to make their own decision, to express their own choice if you haven’t learnt their language and if you don’t understand the culture and story of their being.

We do.

We may not always realise and sometimes the depth of our understanding and knowledge may be lost in the emotion of the moment – the politics of our need and your power. The power that you have ignore us, to marginalise us or to include us. And then of course there is our need for you. The need we have for you to be good at what you do because when you are it can make such a difference. And it’s not always about money.

A little while ago I went to a hospital appointment with somebody and their mum.  The young man is deaf-blind with severe learning difficulties, has a long history of medical care and he has very good reasons to be wary of hospitals. The consultant in question had never met him, didn’t do hands-on signing and had moments to make decisions that would affect his well-being and possibly change his life. Within a minute of entering the room the consultant and the mum were sharing his medical history, years of experiences condensed with profound skill on both sides into a few sentences and expertly probing questions. That done the young man in question was initially reluctant to interact with the consultant and a number of attempts were made to do things in the way that things are normally done. But they failed and I was expecting the consultant to give up and that we would have to come away and begin a formal best interest process.

It was at this point that the consultant had a decision to make. Did the young man have the capacity to make a decision? If so how was he likely to express that consent? Was it possible that the quality of the mum’s understanding of her son would allow the young man to make the decision to consent? He obviously thought so, because the consultant gave the young man more time and allowed him to adjust and to experience the environment. Drawing on the mum’s understanding he also adapted his approach to the needs and experiences of the young man and got his consent. He rooted his decision in her expertise, in a judgement about the young man’s capacity to express consent through behaviour and in the end it worked.

Imagine if this interaction had taken place differently. Imagine if neither party respected the expertise of the other. Imagine if the consultant had paid lip service to the mother’s knowledge and understanding of her son. Imagine if the consultant had dismissed the young man as incapable of giving consent. Equally what if the mum hadn’t respected the consultant’s ability to do his job properly, what if she had been so wrapped in the fear and emotion of the moment that it had all fallen apart.

Its better when we work together.

Cold Rage

Sometimes when you look at the way that the government treats people with learning difficulties it’s easy to do angry. Yesterday was the fifth anniversary of the Panorama documentary into the abuse at Winterbourne View, it’s almost three years since Connor died, about two years since we found out that somebody close to me was being abused, and a couple of months since 7daysofaction began. And right at this moment somebody is being abused, neglected, restrained or drugged, because that’s how things are done and deep down most people just don’t care.

The lives of people with learning disabilities aren’t normally news and yesterday the views of some of the Winterbourne families made news for a while and for me that was a good thing. Because as we all know, the stories of people with learning disabilities aren’t valued and if they can be kept hidden away, behind promises of learning lessons and making things better, then that’s what will happen.

But the lack of voice and the lack of progress on Winterbourne View, Southern and ATUs is no co-incidence. We have now been through six years of austerity and the government has cut our care infrastructure to the bone. Funding for providers has been slashed, staffing levels are low and the prevalence of untrained staff is far too high. The CQC has repeatedly been ineffective at preventing abuse and neglect and as long as its inspections remain focused on systems and paperwork they are likely to remain so.

The government promised action on Winterbourne View, it carried out reviews and inquiries, published a plethora of reports and launched Transforming Care and Building the Right Support. The nett result has been a pitiful reduction in the number of people held in assessment and treatment units and enormous cuts to the availability of support in communities. Small numbers may be re-turning to their communities but in the context of austerity the cost of that support is invariably being taken from other parts of the care infrastructure, putting it at risk and in the end it will be the families that have to make things work …or not.

Like many parents of people with learning difficulties I’m tired and I’m angry.  I’m tired of being a part of a system that sees me as a temporary solution to my son’s long term care needs; something to be used up and then discarded when I’m burnt out or when things go wrong. I’m tired of being assessed so that somebody can tick a box and then repeatedly not provide any support for my son. Frankly I’m tired of the bullshit and the pretence that we live in a society that cares.

But mainly I’m angry and like I said it’s easy to do angry when you are the parent of a person with learning disabilities. You can see the evidence of our anger everywhere as we fight our own personal battles usually in relative isolation, perhaps with the support of friends or with the support of fellow campaigners. We might get help from one or two of the thousands of practitioners who are genuinely committed to their work and whose support makes a profound difference or we might get support from other parents who are increasingly working together to become part of the solutions that we pull together in the context of our everyday lives. Nevertheless our rage at the injustice is everywhere and this government is particularly good at deflecting it and ignoring us.

Apart from the usual tendency to conduct an inquiry, publish a report and then fund a token gesture; one of the government’s most effective tools in protecting itself from families has been to co-opt the large charities out of their roles as campaigners for marginalised groups and into a role as providers and deliverers of government policy. It comes under the guise of collaboration – organisations working together with government to improve service provision – but in an age of austerity it brings with it the danger of a different kind of collaboration – the collaborator as accomplice of your oppressor. And in this case the oppressor is a government that is waging war on our care infrastructure and that believes that cuts to services for older people, for people with dementia and for disabled people is the way to win that war.

These organisations, as well as local authorities and trusts that pretend that the cuts aren’t hurting, inadvertently become complicit in the government’s campaign against our care infrastructure. But the situation is subtle. Like local authorities and trusts, the big charities are generally staffed by people who want to make a difference. People who go into their careers with the best of intentions and yet, who too often become gatekeepers of scarce resources and de-facto defenders of the government and austerity.

Yesterday Christine Lenehan the Director of the CDC wrote:

I cried when I watched Winterbourne View. It took me back to a world I thought we had left behind where systematic inhumanity was tolerated.

It made me and others more determined to renew the fight for the most vulnerable, and to understand why on 31st April 2016 there are still 155 children and young people in ATUs and over a 1000 young people in 52 week placements.

http://pavingtheway.works/whats-new/understanding-humanity/

Well the systemic inhumanity hasn’t gone away its hidden in our processes and in our society’s indifference but the solution isn’t complex, we don’t need any more research, we don’t need committees, we need action. We need to defend, rebuild and transform our care infrastructure – support people, support families and support communities and they will become more inclusive. Invest in in applying patient safety for people with learning difficulties and that care will be safer. The principles of the way forward were found in Valuing People which was published back in 2001 and which was based on four key principles of:  rights, independence, choice and inclusion.

The simple truth is that the poor progress on Transforming Care is due to a lack of investment and politics. The political indifference of our wider society and politicians, and the failure of our large charities as campaigning organisations to challenge the government’s war on our care infrastructure. Despite this we need to remember that many of the people who work in these organisations, even their leaders, are fighting our fight. They struggle to do the best they can with the situation they are in and the resources that they’ve got. They may often be complicit in sustaining the illusion that the government is doing its best for our sons and daughters but we need to remember that they are not the enemy.

There is a wealth of good practice out there – it is scattered and generally under-funded – and we need to find it, share it and celebrate it in the same way that we should condemn poor practice. We need to make the good and the bad measurable.  We need to rob this government of its ability to pretend that everything is fine. We need to take that knowledge and use it to support families in their campaigns, whether that is a campaign to get a son out of an ATU or a campaign to change the law.

If we work together, if we pool our skills and our rage and turn it cold we can.

And we will.