Simon Duffy

Thoughts, Bemusements & Arguments

Month: March 2016

10 Things I Love About Finland

 I was lucky enough to be invited by my friends at KVPS to live and work in Tampere, Finland for the last 10 weeks. It has been a wonderful experience, made even better by the fact that I was able to go with my wife, Nicola. There were too many good experiences to try and fit into one blog. But as a kind of thank you (kiitos) I thought I’d share 10 things I love about Finland.

1. The people, the people, the people – The Finns are almost proud of their reputation as a rather reserved people. But we were treated with the greatest courtesy, warmth and kindness from beginning to end. So many interesting conversations and so kindly invited into people’s homes and given the chance to meet parents, friends and children. I wonder whether the Finns are perhaps exaggerating their own reserve so that the pleasure of their welcome is made even greater by the element of surprise.

2. Katja and Anssi’s cottage – It is an honour to be welcomed into the home of any Finn, but it was a special pleasure to spend my birthday in the country cottage of Anssi and Katja. We got to have a sauna in the snow, see the sunset through the trees and experience the calm and beauty of a Finnish winter night by a lake. Amazing and an experience neither of us will forget with beautiful people.

3. Snow and cold – When we arrived in Tampere it was -25 degrees. But the snow and ice were magical – twinkling like diamonds. At first the extreme cold is a shock – but then you get to enjoy it. The snow brings light and the cold leaves everything crisp and beautiful. Walking across a lake covered in a deep layer of ice is a very special experience. Soon we were regretting the thaws and hoping for more snow and colder temperatures.

4. Music – We were lucky enough to listen to some beautiful music in Helsinki and Tampere, but the high point was the KeMut Concert. This concert, in Finlandia Hall, brings together great musical performances by people with learning disabilities from across Finland. The event was topped off by a rousing performance by the famed Finnish punk band PKN – who have sadly decided to make this their final year. Catch them if you can.

5. Art & design – Finland is rightly famed for its design. There are so many beautiful objects – which seem to honour the strong Finnish sense of home. We were also very lucky to see some great art – including the stunning display of art by Anselm Kiefer. But perhaps the most amazing thing was to visit the Ateneum’s display of Finnish artists. At the end of the nineteenth century Finland produced a crop of great artists, in particular Akseli Gallen-Kallela, Hugo Simberg and Pekka Halonen. I am quite sure that if these artists were French, and had simpler names, they would be as well known as Manet, Monet and Degas.

6. Tampere Cathedral – Who knew that nestled in the back streets of Tampere is one of the most beautiful buildings in the world? From the outside Tampere Cathedral is like a miniature fairytale castle. But inside it opens into a building unlike any I have ever visited. Carvings, paintings, frescos combine in a strange kind of Finnish beauty. I had very few conversations about God in Finland, I’m not sure He’s someone people talk about a lot. But the Cathedral suggests that Finns understand very well the importance of respecting the realities of life and death, the threat of evil and the fragile hope of grace and salvation. I only hope I am brave enough next time (if there is a next time) to enquire a little further into Finnish theology.

7. Unknown Soldiers – This novel, by Väinö Linna, is incredibly powerful. Like War and Peace – but more War and War. However, although the novel is stunning in its brutal description of the realities of war, it becomes more a testament to the dogged determination of men who must survive as all their illusions are stripped away. By the end of the book you love so many of the characters, even those who are rather flawed. It is not a romantic story of heroism (although there is a kind of heroism). It’s about what lies beyond the shores of heroism.

8. The Moomins – I have loved Finland since I was a little boy when one of the first books I read to myself was Finn Family Moomintroll. It was so exciting to go and see the drawings by Tove Jansson at the Tampere at Museum and her frescos which are now on display at the Helsinki Art Museum. More and more I see the close harmony between her work and the values of Finland – especially the joy taken in the small and the beautiful.

9. Food & Beer – One of our family was very worried about our trip to Finland. They thought we’d be eating nothing but sausages and potatoes. How wrong they were. I am not sure I’ve ever had so much fish and salad, combined with tasty sauces, berries and a fantastic range of different breads. On the other hand a Finnish friend asked whether it was really true (as they’d seen on Morse and other detective programmes) that we British drank so much beer. I told her, no, that this was just a stereotype, but then spoiled my argument by talking on and on about beer. However I discovered that the Finns, while not great beer drinkers, are great beer makers. Not only the commercial beers Lapin Kulta and Sandels, but in particular the microbreweries that are popping up everywhere. The beer at the local Plevna was particularly impressive – although I’m sorry to say I didn’t quite managed to make it to tasting all their varieties.

10. Sauna – The importance of the sauna to Finland is hard to exaggerate. Finns love their saunas, although not everyone leaps out to roll in the snow or jump in an icy lake. For an Englishman there are two challenges: public nudity (although usually unisex nudity) and getting sweaty. I must say I really liked the sauna experience and eventually I was brave enough to go to the public saunas. It is relaxing – both physically and mentally – and must give the Finns some of their mysterious ‘sisu’ or determination.

Of course – 10 is not enough. There were many other good things and many things we missed doing. We didn’t get to hear Sibelius, visit Lapland, go cross country skiing, go ice dipping, visit the islands or enjoy the Finnish Summer. But there’s always next time…

So – kiitos Finland – we love you!

 

Questions about Disability Cuts

I was recently asked by the Almeida Theatre company to answer a few questions about myself and my point of view. I wasn’t sure what to do with what I had written to them, so thought I might publish the questions and my answer here out of interest.

1. Could you tell us a little about yourself and the job you do?

I am the Director of the Centre for Welfare Reform, which is an independent think tank, formed in 2009, to try and develop ideas and policies to strengthen and reform the welfare state. We believe everybody matters and work to help build a world which values human diversity and where we treat each other as equals. The Centre mostly relies on voluntary efforts from citizens to research and share good ideas or to examine policies and injustices. Personally I split my time between research, writing and helping people solve social and system problems.

2. Could you tell us (assuming we know nothing about it) how collective cuts are impacting the lives of disabled people and how they are being targeted by the government?

 When the Coalition Government came to power it announced a series of cuts across most areas Government, although largely protecting pensions, the NHS and education. These cuts were particularly severe in two areas: Benefits and local Government. What the Government did not say, but which anyone who understands the basics of Government finance would know, is that severe cuts to benefits and local government will directly impact disabled people:
  1. 60% of local government spending is for children and adults with disabilities – what is called social care – and local government was cut by 30% by the Coalition Government and is being cut again in the Conservative Government. More than half a million people no longer get adult social care – a cut of 30%.
  2. Once you exclude pensions, which the Government did, cuts to benefits means cuts in income to the poorest and particularly to disabled people. In fact only a small percentage of benefits is spent on the unemployed, most of the rest is for disabled people and carers. Disabled people have faced an array of cuts – the picture below perhaps shows it best.
  3. In addition the Government increased the rate of VAT and changed the rules on benefits so that they would lose value over time. Both these policies severely impact on those living in poverty. This policy has continued for the last 6 years, and the cuts get deeper each and every year.

3. Could you tell us a little of the difficulties that disabled people may face when using the job centre service? 

 I think you could break down the difficulties as follows:
  1. The current system is very complex and many people don’t even know that they are entitled to any benefits because of a disability.
  2. If people are aware that they might be entitled to support they need to get through a complex benefit system where entitlements vary because of a whole range of different factors: age, impairment, income, family status, previous employment status.
  3. If people are told they are not entitled to support or if the system just seems too off-putting then many people simply won’t claim money they are entitled to [approx £17 billion is never claimed].
  4. If people do claim then the process of assessment can be very negative and harmful.
  5. If people feel they have been treated unfairly its very difficult to appeal.
  6. Once people are deemed to be entitled to support they can then become part of a Work Programme which may sanction them. The Work Programme has so far given more sanctions than real jobs.
  7. Overall the whole process is depressing, stigmatising and underlines a sense of unworthiness.

4. What is ESA and how are disabled people affected by sanctions?

ESA is the benefit that you get if you are unemployed, disabled and without any other source of income. ESA stands for Employment and Support Allowance and it replaced another benefit called Incapacity Benefit. This benefit has been chiselled away over the past 6 years.
Disabled people confront sanctions in a number of different areas:
  1. Some people are not deemed to be disabled enough for ESA and may instead only get Job Seekers Allowance (JSA). If this is what they get then they must obey rules set by the DWP and the private contractors who run what are called the ‘Work Programme’.
  2. Some people are deemed as eligible for the Employment and Support Allowance (ESA) but also must join what is called the Work Related Activity Group (WRAG). This also means being part of the Work Programme and being subject to sanctions.

5. What is the purpose of a benefit sanction?

 Benefit sanctions are meant to make people compliant with the DWP and its private contractors plans and objectives. They are punishments, taking away benefits, for failure to follow ‘the rules’. There are many examples of these punishments (against which you cannot easily appeal) being imposed for obviously stupid reasons.

6. Our play is about poverty and it’s affect on people. Could you explain how and why people on lower incomes are being targeted by the government?

 This is a big question. In brief I would say the reason that people on lower incomes are being targeted would be as follows:
  1. They are a politically weak group who do not always vote, who are not perceived as a swing voter group and who are (particularly now) no longer well represented by the Labour Party.
  2. Since the end of communism the rich and powerful no longer fear revolution and have persuaded the media and many in the public that growing levels of inequality are ‘economically necessary’.
  3. People on low incomes lack systems to organise and mobilise. Trade unions, working mens clubs, churches and other community groups have diminished in strength or don’t reach out to the poorest. In a sense poverty has been privatised.
  4. The systems that support folk in poverty are often detached from universal systems. e.g. a benefit like JSA is poorly understood and stigmatised. The majority of the population see themselves having no stake in the benefit system – it is for ‘others’. Even those needing benefits are divided from each other e.g. disabled people get different benefits to other people on low incomes.

7. Social and financial inequality is at the highest it’s ever been – why is this and what do you think it points to in the future?

 In addition to all the points above there is the problem that the world is changing in other unpredictable ways – climate change, technological change, growing debt (which is just a special kind of socially constructed inequality). Often we don’t know what we can change, what we can protect and what is worth fighting for. Since the development of the welfare state we have often entrusted what is important to government and to politicians and hoped that they would ‘do the right thing.’ Sometimes they have, often they haven’t.

Strangely I think that – after the development of the welfare state and after the cold war – we somehow managed to forget what we were fighting for during the turbulent twentieth century, which was: equality, rights and democracy. Now we seem to have gone to sleep and we expect some mysterious powerful elite to take care of us.

For me the question is whether or not we will wake up and start behaving like citizens: people who take our responsibilities to each other seriously.

If we do not then small problems, that are essentially easy to solve, will grow into cancerous problems that will overwhelm us. We are the key to our own future.

8. How has the bedroom tax affected the lives of people in this country either living with a disability or without?

The bedroom tax is just one other unjust attack on the incomes of the poorest. Its impact includes:
  1. Disabled people losing the space they need for carers or assistive flatmates
  2. People going into debt because they can no longer afford their rent
  3. People moved out of their home community because there is no suitable housing in their own
Essentially the bedroom tax symbolises our deep disregard for community – we can now be ‘priced out’ of our own place, our own history. Local government is not answerable to us – but to the money invested in our homes.

Czars, Commissioners or Just Us?

For readers outside the UK I must do some scene-setting. In 2011 the television documentary programme Panorama did an exposé on the crimes committed against people with learning disabilities at Winterbourne View, a private hospital in South Gloucestershire. This was the first time in a long while that people with learning disabilities had come the attention of the UK’s mainstream media.

In fact my own emotional response to the crimes at Winterbourne View may seem peculiar. I wasn’t shocked by the abuse scandal. I was glad that this long-running scandal had finally been revealed. Places like Winterbourne View have been around since the early 1990s and this kind of abuse is typical of what happens in those kinds of systems. In fact, when carrying out some research in South West England, I met several families whose children had been at Winterbourne View and they said that it was the ‘least bad place’ that their children had been forced to live.

I am sure that most professionals working in the system know that these things have been happening and have been happening for a long time. Certainly my own work has been inspired by a strong desire to get rid of such institutions and to ensure people are treated as citizens instead.

The physical and mental torture imposed on people at Winterbourne View isn’t even the worst of the crimes committed against people with learning disabilities. Far too many people die, either because of abuse, poor healthcare, over-medication or negligence. The fact that there are now some powerful advocacy groups putting pressure on the Government over these issues is one of the few bright spots in an otherwise bleak scene. The UK Government is getting away with cuts in support, cuts in housing, cuts in income and cuts in employment for people with learning disabilities. But at least it is not quite getting away with funding services where we know people are likely to be tortured and where they may even die.

The irony is that, of all the political problems faced by people with learning disabilities today, this is about the only one that has not caused been by our current extreme right-wing Government.*

These attacks on the lives of people with learning disabilities typify institutional service provision. Long-stay institutions, with their regimes of power and control, encourage criminal and immoral behaviour. Treat people as if they do not belong, treat people as if they are not worthy, are not fully human, then this will be the almost inevitable result. [Not quite inevitable, for nobody is ‘forced’ to act badly; but put people in the wrong environment and the temptations to act badly will grow quickly.]

I have written about this at length in my book The Unmaking of Man.

The first large scale institution to close in England was Darenth Park Hospital in 1988. The last to close, Orchard Hill, was closed in 2010. The Centre has published a number of reports describing these places and the experiences of people and staff.

In international terms England closed its institutions early. However there were many problems that we did not manage to resolve during this process and much of the early momentum towards inclusion ended once the hospitals were closed. Today’s scandals reflect important limits to this early progress:

  • Limited public understanding – Hospital closures were inspired by family advocacy, but largely led by professionals (who were often inspired by Wolf Wolfensberger’s theory of ‘normalisation’). As the process of closure began it also became largely a professional matter – campaigning diminished and the public started to think of deinstitutionalisation as some kind of weird Thatcherite plot. Public understanding of, and commitment to, genuine inclusion has remained weak.
  • Institutional community services – The typical model for post-institutional care has been group home plus day centre. Most people leaving institutions were simply forced into this new (milder) institutional environment. We made the classic mistake of thinking that the institution was the building and we failed to see that we were rebuilding institutions within our communities. Many organisations that had once campaigned and advocated for people’s rights became major service providers.
  • New extreme institutions – Unsurprisingly some people from the old institutions could not ‘fit’ inside the new community institutions. So a profitable business developed as entrepreneurs (often ex-nurses) set up private care homes and hospitals to house those whom this early form deinstitutionalisation had failed. This process had begun by the early 1990s, and these business picked up new ‘clients’ whenever local community services failed to provide the right support. The NHS set also up what it called Assessment and Treatment Units (ATUs) to try and limit this problem, but often these services simply replicated the same problem.
  • Crisis-driven eligibility – While many private and charitable businesses boomed during the period of ‘community care’ there was an on-going failure to address the fundamental issues of rights, power and control that shape the future. Families still face the same fundamentally unfair choice with which they were confronted during the institutional era: either ‘carry on taking care of your child by yourself’ or ‘hand over your child to us’. That is, we have continued to offer families responsibility, with minimal support or to have provided services over which families have had little control.

It is these combined factors that have led to the creation of places like Winterbourne View. When carrying out the research described in Returning Home and Getting There a clear pattern emerged to describe how people ended up in abusive environments costing an average of £175,000 per year:

  1. A family struggles with minimal support and then something happens which brings them to a point of crisis.
  2. At the point of crisis their son or daughter is offered a place in some kind of ‘community institution’ (usually a group home).
  3. The young person hates it; they feel a mixture of anger, sadness or fear and they start doing things to hurt themselves or hurt others.
  4. The young person is deemed to have ‘challenging behaviour’ and is then moved to a more ‘managed environment’ further away from home.
  5. The young person hates that too and so a cycle begins which leads to increasingly professionalised, expensive and institutional services.

So we end up where we are in England today. Not only do we have 3,500 people forced to live in private hospitals and ATUs, we also have about 8,000 people living ‘out of area’ and many thousands more in prison.

And none of this is necessary.

I know this is not necessary, not from theory, but from practical experience. In 1996 I set up a new type of service provider, Inclusion Glasgow. This organisation ended up working with some of the most challenging people leaving the institutions in Scotland. Together with my friends and colleagues we developed a very different kind of deinstitutionalisation process where we provided personalised support:

  • Individual service design – Everybody is treated as a citizen with the right to a home of their own, living with people they choose and living a life that makes sense to them.
  • Empowerment – Power and control is shared with the person and their family to make sure that decisions are made quickly, appropriately and as close to the person as possible.
  • Personal assistance – People get support from the right person for them – recruited by them, employed for them – but with support and employment coming from the organisation.
  • Individualised policies – Rules and ways of working are designed with and around the person to keep them and everyone else safe.
  • Individual Service Fund – People have a personal budget which is protected and can be used to support flexible and creative service design.

Basically our approach was – treat everyone like a unique individual and support people to be full citizens with all the rights of citizenship. This is an approach that works. We went on to help establish two more organisations to carry out this work: Partners for Inclusion and C-Change for Inclusion. We also worked with a network of other smaller and inclusion-focused organisations in Scotland.

But while this process worked it did not really spread very far.

Personally my work from 2000 onwards focused on taking some of the lessons from Inclusion Glasgow into the development of systems of self-directed support. I wanted to help social workers work in the same way that we had – to empower citizens and families and to design support that was flexible and community-focused. First I took the model I’d developed to North Lanarkshire and then I took it to In Control in 2003.

Perhaps negligently, I trusted that the Inclusion Glasgow approach would flourish naturally in the new world of self-directed support. I was clearly wrong.

Reflecting on all of this now some things strike me as worth more attention.

Change requires not just better systems, but real leadership. There has been no significant ‘market’ pressure for real innovation by services. Organisations have been allowed to continue with old forms of practice because commissioners know no better and families have not been encouraged to demand better from service providers. Instead families have simply been encouraged to take over all responsibility – becoming employers, accountants, brokers and innovators – all for free.

The early successes of self-directed support all relied upon the willingness of some families to take this difficult path. It is testament to the power of love and family that so many have succeeded. But why should this be necessary? Why cannot services learn to work with families as true partners?

The other thing that strikes me is our peculiar image of leadership.

From 2001 we had a Learning Disability Czar. Does anyone else not think that this is the strangest choice of language? Why would we think this a useful image of leadership – to be the head of the failed Russian Empire? For me the idea of Czar suggests a range of problems:

  • An enormous faith and power invested in one – democratically unaccountable – individual.
  • The corrupting role of patronage – funding being directed wherever the Czar feels it should be best spent.
  • A culture of submissiveness, solicitation and supplication that inevitably arises around any charmed central figure.

I cannot see why anyone would think this would help. Instead I think the creation of the Czar during the New Labour era helped to put us all to sleep. We learned that obedience and compliance would be rewarded with extra funding. We stopped seeking fundamental legal change, instead we expected wisdom to come down from Central Government. But what in our experience might lead people with learning disabilities and their allies to believe that Government is the font of all wisdom?

In a recent report emerging from the Winterbourne View crisis it is suggested that the answer to our problems might be to appoint a Learning Disability Commissioner. I don’t know about you but the word ‘Commissioner’ always reminds me of Commissioner Gordon in Batman. May be this is preferable to a Czar; but as we already have an enormous ‘care policeman’ in the form of CQC I don’t quite understand how another policeman will help us. Perhaps we do need Batman – but unfortunately I am not sure he is going to swing to our assistance. However a commissioner is certainly more in tune with the austerity era – no money, but perhaps some additional power to bully people.

As with all efforts to centralise power and control, the fundamental flaw in these dreams of Czars, Commissioners or any other such ‘magical leadership’ figures is the notion that transferring power and control away from people, families or communities and towards the new king-pin figure, will improve things. We naively assume that just by creating this king-pin role then it will inevitably be filled by the ideal figure of our dreams. But in reality these characters often make things worse.

In our efforts to improve things for real we must accept that there will be no Batman, no Commissioner and no Czar to solve our problems. Perhaps we need to take responsibility ourselves – in whatever role we find ourselves.

In particular service providers, social workers, advocates and charities need to think about how they can take responsibility for offering people and families much better support. Nothing stops us from offering people personalised support – the power to change things is in our hands. We know – at least many of us do – how to do this better. It’s time to get on with the job at hand.

For myself I’m thinking hard about how the lessons from Inclusion Glasgow and from other forms of personalised support could be shared more effectively in the future. I’m thinking about how families could be given a much better deal in future. I’m thinking about how we might develop the momentum to return to a focus on inclusion and citizenship – not failing services or institutional systems.

* I say ‘extreme’ not only because it’s true, but because our media seems to be branding the current Labour leader as an ‘extreme’ left winger. This seems very peculiar, as his policies seem rather moderate to me, so I use the term simply to try and balance out the impact of media slurs. I encourage any of you so minded to do likewise.

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