Simon Duffy

Thoughts, Bemusements & Arguments

Tag: disability (page 1 of 2)

Welfare and the Common Good

My friend Virginia Moffatt recently edited a collection of essays called Reclaiming the Common Good which explores the way that society, in so many ways, seems to have lost its way. My essay explores some of the original thinking behind the welfare state and what we might do to return to the ideas that originally inspired it. The book launch was in Bloomsbury on 20th September 2017. Virginia asked several of the authors some questions, and here are my answers.

How would you define ‘welfare’? Why is it that we are currently living in a country where those in greatest need are being denied help?

A Finnish friend of mine, Katja Valkama, who was doing research on social policy in the UK asked me: “Why do people say all these negative things about ‘welfare’? In Finland welfare just means well-being.”

Exactly.

The term ‘welfare state’, was coined by Archbishop William Temple, and it was certainly meant to capture the idea that we needed to ensure that our social arrangements – underpinned by law, democracy and the power of the state – worked to guarantee everybody’s welfare – everybody’s well-being.

And the five main pillars of the welfare state still do so today:

  1. Health – The NHS provides us with universal healthcare
  2. Education – Public schools provide us with free education up to 18
  3. Income Security – Pensions and benefits provide some income security
  4. Housing – Housing benefits and social housing provide some protection from homelessness
  5. Disability Support – Local government provides some rather limited social care to people with disabilities and older people who are frail and need assistance

As my ordering suggest – some systems work much better than others and interestingly the ones we value most are:

  • The most universal ones, with no means-testing
  • The ones we forget are part of the welfare state

The word welfare – and its associated stigma – seems to attach itself most closely to social security and to any systems that seem to be just for the poor. This is despite the fact that the biggest benefit – accounting for about 50% of all benefits – is the state pension – a universal benefit. We have somehow allowed welfare and the welfare state to become stigmatised; this is despite the fact that the largest parts of the welfare state remain popular and so have been relatively protected from recent cuts.

On the other hand, the reason why the cuts of austerity have fallen so heavily on disabled people is that they are a group that is particularly dependent on the less universal elements of the welfare state: housing, care and benefits. These are politically easy things to cut because most people think they have no stake in them.

It is particularly important to recognise that our current problems are not so new. Things have been moving in this direction for several decades. For instance if we compare our situation today to the 1970s three things stand out:

  1. The poor have been made poorer, by a mixture of economic change and the lower value of benefits
  2. The rich have become a lot richer, but they do pay a little more in taxes
  3. Most people are in the middle and they are about the same – their wages have dropped, but the difference has been made up by benefits (disguised as tax credits, pensions, housing benefit etc.)

Austerity has recently made things much worse the poorest. But the system has been getting worse and worse for over 40 years. Over time its main function has shifted so as to subsidise the incomes of the middle-classes. But this has been managed in a way that enables them to psychologically distance themselves from those stigmatised groups that they see as beneath them. This is today’s double injustice: we steal from the poor, but heap blame and stigma on their shoulders at the same time.

What would you say to those who argue that the welfare state is no longer necessary in modern Britain?

It’s really important to realise that the development of the welfare state is correlated – above everything else – with the growing insecurity of the modern world. Our productivity or average wealth is irrelevant: people can starve or be forced into prostitution, homelessness or suicide even if society as a whole gets wealthier.

Average wealth is irrelevant, it is equality and income security – not economic growth that is most important.

In fact our amazing productivity has only been achieved by sacrificing (often not willingly) basic economic securities:

  1. First we lost the security of the land and millions were forced to come to the towns for work, and they then became dependent on ’employment’ and those who did not fit into this system were forced into the workhouse.
  2. Second craftsmen and labourers lost the security of their roles as machines produced more for less.
  3. Third we discovered, through the Great Depression, and many other bubbles, slumps and downturns, that even a job was no security. We can now manufacture droughts and famines through bad planning, economic anxiety and panic.

We discovered that the modern industrial world is no protection from growing inequality and radical insecurity – what Simone Weil calls rootlessness. These injustices then inspired revolutionary hopes and fascist reactions. This unleashed war, revolution, terror, eugenics and the Holocaust.

The welfare state – which had its seeds in Bismarck’s Germany – was always a way of replacing the basic securities that people desperately need in a world that had lost the older securities of land, church and community.

Nothing about the current state of the economy makes the welfare state less necessary. Income insecurity is even more extreme today than before the War. Our incomes are far more dependent on Government-run systems and subsidies. We simply take for granted the enormous benefits that come from the welfare state and the security – even its current inadequate form – that it provides for all of us.

We’ve gone to sleep and we’ve forgotten all that we’ve come to rely on.

The organisation you run is called the Centre for Welfare Reform. Can you give us some of your thoughts how the welfare state could be reformed for the good of all?

I do wonder whether it was a good idea to name the Centre as the Centre for Welfare Reform. The term ‘welfare reform’ is now so toxic and so closely associated with the changes introduced by the Coalition Government that it is quite confusing. However, I think that a civilised society will always want to ensure that it is organised in the best way it can be to ensure the welfare of all its members; so I think welfare reform – true welfare reform – actually improving how we take care of each other – will remain an important project – even if we’re not sure what to call it any more.

For me the central challenge of improving the welfare state was set out by the philosopher Jeremy Waldron:

Above all, I think the idea of citizenship should remain at the centre of modern political debates about social and economic arrangements. The concept of a citizen is that of a person who can hold their head high and participate fully and with dignity in the life of their society. (Liberal Rights, p. 308)

What this requires is up for debate, but I think we can mark out the two extremes that we must avoid – the Scylla (rocks) and Charybdis (whirlpool) of welfare reform between which we must steer:

  1. We must avoid the assumption that the state is some rational and benign entity who can be trusted to simply meet our needs and solve social problems on it own. This way of thinking is fundamentally undemocratic and it treats citizen as non-citizens – as passive, dependent and lacking in responsibility. The last 40 years, and particularly the last 7 years, have clearly demonstrated that the state cannot be left alone with this task of taking care of us.
  2. We must also avoid the assumption that we have no need for the welfare state, that we can all manage alone, or in our families. Citizens are not lone wolves, consumers or producers; they are people who need to live together and need to work together to build a meaningful and mutually rewarding world.

What this means is that we must look for welfare reforms that are going to encourage us to be the best that we can be both singly and together. We need to create a world where everyone is included, everyone is an equal, everyone is treated as a full and valued citizen.

So, what might some positive reforms look like?

Briefly I would suggest the following:

  1. The basic idea of the NHS remains sound – what we will want to do is bring it closer to our communities. Professionals sometimes forgot their core purpose – to teach, assist and enable.
  2. Schools needs to be freed from the tyranny of regulation and the phoney idea that they can prepare people for work. Education should be more inclusive and focus on building our capacity to be citizens.
  3. Income security needs to be radically reformed, and at its centre needs to be the idea of a basic income – a secure income that is enough for each of us to live a life of dignity.
  4. Housing needs to become a right and a fundamental responsibility of local communities must be to ensure everyone can live in their own community and not be forced out by increased housing costs. Citizens should belong where they live – and they should not be forced out of their communities by ‘market forces’. I believe a Land Value Tax, which ensure property owners support non-property owners will be the core reform required.
  5. Social care – or disability support – needs to be established as a universal, non-meanest-tested right for all of us. This is entirely possible and affordable.

Underpinning all of this – I believe – will have to be a resurgence of genuine democratic behaviour and of constitutional reform. People need to be free in order to be citizens, so that they can challenge, engage and collaborate in order to build the society we need. We will need new constitutional arrangements to establish, monitor and protect our human rights, and we will need a renewed civil society – with social organisations that are willing to speak out and stand up for justice.

I suspect that, along with secure social rights, established at a national level, we will need to pay much more attention to the local. Meaningful citizen action and community life can only becomes possible if some powers are decentralised and so people can focus on change at a personal, family and community level.

Of course much of this will seem a dream. But the post-war welfare state also seemed like a dream. I suspect it is only dreaming that will save us from years of further moral and social decline.

Australia’s Pride, England’s Shame

How Australia is taking the lead in disability rights and social care

I have just returned from 3 weeks in Australia where I have been working with disability advocates, families and support organisations. The question we were exploring is how can we best support our own active citizenship and the citizenship of others. I was also able to be part of the launch of Citizen Network Australia in Perth and it was fantastic to hear people’s enthusiasm about building a global movement for citizenship for everyone – for a world where everyone matters.

The trip was also a chance to reflect again on the development of NDIS. Australia’s National Disability Insurance Scheme (NDIS) is without doubt the most exciting, most ambitious and most perilous attempt to reform disability support and to bring it in line with human rights and the principles of independent living. All around the world, we have a stake in this reform, because no other country has been brave enough to introduce such an important reform.

Critically NDIS aims to do three vitally important things:

  1. Properly fund the support needs of all people with disabilities (including many people with mental health problems) under pension age.
  2. Remove all means-testing so that every Australian has the security of knowing that the system will be there for them, no matter their income.
  3. Ensure all funding is individualised and under the control of the person or their representative, so that people can get support that makes sense and enable them to be a full and active citizen.

This is brilliant – if Australia achieves this it will have moved itself from the back of the pack in disability rights to become a true world leader.

This is in stark contrast to my home country, England. Similar reforms in England, which began with the Independent Living Fund (ILF), Direct Payments and then Personal Budgets all promised much in terms of increasing people’s level of control over their own support. However these achievements pale into insignificance alongside the vicious means-testing and the severe cuts that began in 2009. There are 700,000 fewer people now getting support than in 2009, a drop of about 40% – and these problems are only getting worse. The United Nations has severely criticised the UK for its failure to respect the human rights of its own citizens, and their criticisms are entirely justified. Social care in England remains a ‘Poor Law’ service – a poor service, for the poor, that keeps you poor.

We have still not learnt that genuine and positive reform is possible; but it begins by bringing together people with disabilities – all disabilities – families and support organisations to campaign and to explain – not so much to Government – but to the general public – why a right to disability support (what England calls social care) is a fundamental human right. I continue to work with the Socialist Health Association to encourage the Labour Party to develop a more positive and ambitious vision. I am extremely grateful to the Australian disability movement for showing us the way ahead – we just need to follow them.

However there are some major challenges ahead. Having a plan is one thing; putting that plan into action is something entirely different.

I was in Australia when the details of NDIS were first announced and I met with the design team – the civil servants charged with defining how NDIS was to be delivered. My analysis, which I went on to publish (with my usual tact and diplomacy) was that the design of the system was very poor indeed. There remains a severe danger that the system will become enmeshed in centralised bureaucratic controls that undermine the basic human rights that NDIS aims to respect.

Moreover, many of my friends in Australia are the people who called for these reforms and who continue to work to innovate and improve the system so that disabled people and families are put in charge of their own lives. They are now on a rollercoaster of emotions as they see enormous progress in some areas, matched by the development of systems that seem damaging or just plain peculiar. You can read a moving story from one woman’s perspective here.

It would be tempting to say “I told you so.” But I don’t think that’s the appropriate response, and my last visit to Australia has left me much more encouraged than down-hearted.

First of all Australia is living up to its promise to properly fund NDIS and this is no small achievement. Second, while many of the detailed systems do seem crazy, they can all be resisted and reformed. In fact even more encouraging than the progress around NDIS is the continuing sense of passion and determination amongst Australian advocates and disability leaders. They know that they can achieve so much more and they know that they can – despite all the obstacles – make the system accountable. Disability advocates have been able to achieve more change and have created more transparency than in any other countries that I am familiar with, including: England, Scotland, Finland, New Zealand and the USA.

What is more, I see increasing signs of collaboration between different kinds of disability advocates around the issue of genuine choice and control. For example, Vicserv has pulled together a wide-ranging alliance of disability leaders to explore how to define good practice in self-directed support. Likewise the Self Direction Collaboration Network brings together a range of brilliant advocates, leaders and facilitators for shared work on turning the dreams of NDIS into practical reality.

The challenge may be to simply to hold one’s nerve and to holdfast to the original intentions of the NDIS. The current system is changing and evolving in such a fast, complex and unpredictable way that it is easy to be mesmerised by it. When it does crazy things that don’t make sense then its natural to be disappointed and angry. But it is possible to fight-back and often it is possible to work around the problem.

I was struck by how the innovative organisations that I worked with in Western Australia, like Avivo and My Place, were also having to remind themselves that they’d already spent decades working around the rigidities of poorly designed systems. The capacity to respond creatively to bureaucratic rigidity hasn’t disappeared simply because the funding body has changed from the State to the Federal government.

It is important to remember that important changes and innovations do take time and that NDIS involves at least two distinct innovations, both of which are at different stage of their evolution. Innovations evolve over time and go through distinct stages as they (and if they) evolve. Partly NDIS is introducing a model for calculating need, and ensuring everyone gets a suitable package of support. This is priority for the system, and this is moving into the stage of mainstream implementation – Stage 3.

A graph showing how innovations develop

Where NDIS is on the innovation curve

But NDIS also promises flexible funding that people can control and here progress is at much more primitive stage – at best early Stage 2. This may seem disappointing, but it’s important to recognise the reality of how these kinds of changes take. Individualised funding began in the 1960s (in California) and the first UK models began in the 1970s. When I first came to Australia and talked about individualised funding in 1999 everyone looked at me like I was crazy. When I next came back in 2008 I found handfuls of people and families who had got self-managed supports, but they had been told not to tell anyone – they were ‘State secrets’ – in theory not allowed, and if you talked about it you might have it taken off you. Today the idea of personalised support and self-management has been normalised – although the reality is a long way behind. This is how progress happens.

I left Australia, not only encouraged, but also thinking that there is much more we could do to work together globally. The battles in Australia are the same battles that we’re facing in other parts of the world. In each country, where people have been inspired by the desire for citizenship, equality and inclusion, then people and families have been able to find a way through to create better support solutions. Countries can learn from each other, advocates can help each other, we can share the lessons we learn to speed up the process of change. For instance, we might be able to use Citizen Network as a global alliance; we can start to share examples of the very best practice to feed our courage and strengthen our confidence.

We launched Citizen Network in November 2016 and already there are 10 countries who with national coordinators and hundreds of people and groups have joined as members. It is still early days, but we have all the reason in the world to work together for a better world, where everyone matters, where everyone can become a full citizen. Why don’t you join us?

What Do We Believe?

Many of us believe in justice, and we try and work for justice. But sometimes the “long arc of history” seems a very distant hope. For those of us who work to advance disability rights we see the tide of negative forces rising: cuts, hate crime, eugenics, prejudice and political leaders who have no shame in taking us backwards.

And it is not just disabled people who face intolerance and whose gifts are rejected. The immigrant, the asylum seeker or the refugees faces fear and hatred. People in poverty are increasingly treated as somehow less than human and are subject to political scapegoating. People of different faiths and different sexualities face suspicion and disrespect. Women and children faces ongoing disadvantage and economic systems that seem incapable of recognising true value.

We can see what’s wrong, but we’re not sure what’s right.

We live in confusing times and many of our assumptions about what true justice looks many need to be re-examined. Many of us feel tired and disappointed. The leadership offered by mainstream politicians seems inadequate to the challenges before us. We want a better way, a way more suited to the reality of things.

If we just take the United Kingdom as a case study the growing tide of injustice is obvious to many of us:

  • Disabled people face cuts in their income and services for no better reason than they lack political power. Changes to benefits are leading to illness and suicide. Institutionalisation is returning, with all the inevitable deaths, rapes, abuse and indignity.
  • The Government refuses to take its fair share of refugees escaping war and terror. It has created a “hostile environment” for asylum-seekers and seems unconcerned about sending people back to persecution and death. It rejects warnings about its human rights record from the United Nations and tries to minimise its international obligations.
  • People in poorer communities across the country are dying more than a decade earlier than their peers because of inequality, inadequate housing economic insecurity and air pollution.
  • Employment is high, but wages and job security is low. Government policy seems based on lies and prejudice; ordinary citizens are bullied in job centres and hit with sanctions for noncompliance. Carers and volunteers, mostly women, are treated as if all their hard work has no real value.
  • The state is centralised in London, while public policy is corrupted by private corporations. Democracy is limited to a 5 yearly choice between leaders who often seem totally distant from the communities they supposedly represent. Political debate is distorted by a media owned by billionaires or by a BBC that has been cowed into submission by political pressure.

The UK is certainly an extreme case. It is the most unequal country in Europe and is cursed with leaders who seem only to want to make things worse. But friends in other countries share some of our problems:

  • The USA must deal with the emergence of leaders like Donald Trump, who sees nothing shameful about reducing health coverage, a basic human right, abandoning efforts to protect the climate and the environment and declaring “America first”. Racism and xenophobia have been normalised as politicians pander to fear and economic anxiety.
  • In Europe right-wing parties are also encouraging hateful policies. Even in countries like Finland, racist parties are gaining support. At the same time countries like Greece are being crushed by economic policies that slash the incomes of ordinary people and mire the country in further debt.
  • Across the developing world large corporations are purchasing power, extracting resources and exploiting the local workforce. Old style imperial colonialism has been replaced with corporate colonialism.

Are these all different and distinct injustices or are they really same injustice, just looked at from different points of view?

Clearly there are important differences of details; however there is a strong case for seeing these problems as all stemming from the same kind of dangerous and bankrupt mindset.

Firstly many of these injustices are connected by a rhetoric of exclusion and scapegoating. Their message is that our problems are caused by them: the poor, the disabled and the foreigners. We need to keep them out, put them away or keep them down. And this message also contains an implicit threats: Don’t dare to stand alongside them. Stay inside the blessed circle. Trust us to look after you, or else…

When the powerful exploit prejudice in this way the result is never pretty. Rarely does it lead to unity amongst the oppressed. Too often it leads to infighting, fear and further scapegoating. In communities where there is severe economic decline and a lack of power then racism can raise its ugly head. When disabled people are attacked then some may choose to keep their distance from those who are seen as ‘too disabled’.

Malcolm X nailed it when he said:

If you aren’t careful, the newspapers will have you hating the people who are being oppressed and loving the people who are doing the oppressing.

So perhaps we can start with one obvious moral truth: everybody matters. Black lives matter, disabled people matter, foreigners matter, you and me matter. We all matter; we are all equally important.

It’s been said before, but it’s worth repeating: We are all equal.

The UK gives further wicked twist to this rhetoric of exclusion. Politicians now proudly say that we should live in a meritocracy, a world where the ‘best’ rule the rest.

It is hard to know whether to laugh or cry when politicians use this term, for it’s a term of satire invented by Michael Young (who also invented the Open University and many other good ideas). As long ago as 1958 Young argued that, if we’re not careful then society will divide into two classes, and that those in power will increasingly come to think that they are cleverer, and therefore better, than the rest of us and that have the right to rule over us. Today our ‘clever’ politicians make use of the term, but they don’t seem to have the read the book or understood the argument.

Our well-educated elite don’t seem to have noticed that term meritocracy means, going back to its Latin and Greek roots: ‘rule by the best’. But there was already an older term, which in its original Greek form, means exactly the same thing: aristocracy. I wonder what the public would think if they heard our Prime Minister declare that we need to live in an Aristocracy.

Meritocracy is opposed to democracy: rule by the best, not rule by the people. The modern elites really seem to believe that some people are better than other people and these ‘better people’ should be ‘awarded’ with more power, money and status. This is a great philosophy if you already have more power, money or status. It tells you that you deserve what you already have and that those who lack what you have, don’t deserve to get it. You kid yourself that you’re not only richer, but you are better too.

Of course the idea of meritocracy exploits and misuses one important truth: We may all be equal, but we are certainly all different.

Humans are wonderfully diverse. We are blessed with a great range different gifts and needs, which together make us utterly interdependent. We need each other. Human life, at its best enables people to use, share and develop these diverse gifts through different forms of community life.

Instead of enjoying the beautiful reality of our humanity the meritocrat imposes their own stupid ladder of values: the clever (as they define themselves) should be on top.

But meritocracy is a wonky ladder to nowhere. Instead of building lives of true meaning, citizenship and love, we are invited to clamber up on top of each other, to rise up to the ‘top’. Quite what we’re expected to do once we reach the ‘top’ is not exactly clear. Perhaps they really do think money, power of fame is the point of life.

Against this nonsense we must assert: We are all equal, We are all different and our many differences are good.

Of course, we have been here before, although it is astonishing that we seem to have forgotten all the lessons of twentieth-century history. Racism, eugenics, extreme inequality and colonialism all fed into its wars, revolutions, the racist and communist terror and the Holocaust.

Out of the ashes of the evils of the twentieth century arose two great social achievements. First, we asserted the fundamental importance of human rights in the UN Declaration and in subsequent conventions. Second, we built systems of social security, education and healthcare to protect people from poverty, insecurity and exploitation. It is telling that today both human rights and the welfare state are under threat.

Today the powerful claim that human rights are dangerous. They want the right to abandon the rules set down in international law. They also claim that we can no longer afford the welfare state. In particular immigrants and disabled people are just too ’costly’. This is all nonsense. Despite all its problems, the world has never been so wealthy. The problem is that we are wealthy, but insecure. As economic anxiety increases then we start to believe those who lie to us and tell us that some ‘outsider’ is threatening our security. How easily we accept the lie that it is the asylum seeker, not the tax evader, who threatens the welfare state.

It is disturbing to see how weak the welfare state has started to become. It grew quickly, offering jobs and services to so many. Then its growth slowed and managers emerged to ration, re-organise and achieve efficiencies. Now, as cuts strike even deeper, many employees of the welfare state (and it doesn’t matter whether they’re employed by the state or by civil society organisations) find that they cannot resist, cannot challenge, cannot become ‘political’ or they will find their own jobs under threat. The welfare state has become a passive victim, going almost willingly to its grave.

What is the cause of this collapse in moral values and commitment to social justice? What can we do about it?

It is easy to invoke big concepts: capitalism, neoliberalism, debt, exploitation. All of these ideas do tell us something true. But if we are not careful we end up feeding our fears. We create an image of monstrous evil that is too big, and too mysterious. We start to feel that there is something inhuman and inevitable about the forces ranged against us. It is important here to remember another lesson from the twentieth-century: never trust anyone who talks about the inevitable march of history, the thousand year reich or the internal contradictions of capitalism. Ideology just means taking one idea to its crazy extreme.

At one level the motives that feed these injustices are all too understandable, all too human the: excessive desire for wealth, power or fame. At another level we know that all these human forms of greed become enmeshed in political, economic and social structures that seem like they’re no longer controlled by human action: bureaucracy, political manipulation, financial markets or corporate exploitation.

But we cannot allow ourselves to given into despair.

Moral collapse demands moral action, and this action needs to start by focusing on problems that we can solve. The good news is that there is much that we can do. There are many ways to make the world a fairer, more decent and welcoming place and there are solutions to our problems around which others can rally. There is no reason to wallow in doom. We need to pick ourselves up, shake off the dust of disappointment and look around and honestly evaluate the reality of our situation.

For those of us who care about people with learning disabilities we have already been taught so much by thinkers and activists who have been sharing their wisdom over the past decades. Wolf Wolfensberger showed us how to protect people from stigma and the threats of being turned into some inhuman ‘other’. Beth Mount and John O’Brien helped us understand how dreams and aspirations can be converted into lives of meaning. Judith Snow and her friends Marsha Forest and Jack Pearpoint helped us see that everyone is gifted and that even our needs are gifts, creating the opportunities for human connectedness. We have a great legacy we must protect and pass on to others.

We have many potential allies. So many other groups of people face exclusion because of illness, disability or being seen as ‘too different’. We need to understand what these groups can teach us so we can help a world that is welcoming of difference for everyone. Many people around the world are learning the power of community action and cooperation. Varun Vidyarthi’s work in India shows us that starting with small groups of people, even with the most minimal financial resources, is no barrier to positive social change. John McKnight’s work on asset-based community development helps us restore a sense of balance and possibility to our local neighbourhoods. Today communities around the world are declaring their willingness to welcome the stranger, the immigrant, refugee or asylum seeker. In my home city, organisations like Assist Sheffield support and protect asylum seekers from the dangerous policies of the UK Government.

This is not an infallible recipe book for social justice, but we know enough already to be hopeful and confident that justice can advance. We can also develop ideas for new social and economic structures that will advance justice for everyone. For example we could campaign for:

  • Constitutional change to safeguard human rights, including our social and economic rights
  • Shifting power back to smaller communities and increasing direct democratic control in those communities
  • Universal provision of a basic income so that everyone’s income is secured without stigma
  • Radical change in housing policy to ensure that local housing is available to everyone and no one is forced out of their community
  • Significantly greater income equality, locally and globally, eradicating worldwide poverty

The task before us is real and pressing. Even if we are not sure how to change everything then some of the most practical demands of justice are still clear:

  • Stand up for those who are endangered or excluded
  • Build alliances and connections with other oppressed groups
  • Act like a citizen yourself, now, before it’s too late

There are many great communities out there trying to help make a difference, but we’ve recently launched Citizen Network as a global cooperative to share experiences, projects and to work together to advance the cause of justice and build a world where everybody matters. Why don’t you join us?

Why We Are Launching Citizen Network

Hütia te rito o te harakeke, kei hea te kömako e kö? 
Kï mai ki a au, ‘He aha te mea nui i te ao?’ Māku e kï atu, ‘He tāngata, he tāngata, he tāngata’. 

If the heart of the flax is pulled out, where will the kömako sing? 
If you ask me what is most important in this world, I will reply, ‘It’s people, it’s people, it’s people.’Maori Proverb*

Last Thursday, in Auckland, at the international conference on self-direction, brilliantly hosted by Manawanui In Charge, we launched Citizen Network. I think this might be the most important initiative that I’ve been a part of and I want to explain here why we’ve come together to create Citizen Network, and why we hope you will join us.

The idea of Citizen Network began at the Vancouver Conference on self-direction in 2015. We wanted to find a way to connect up all the positive initiatives, around the world, that advance citizenship for people with disabilities, and for the many others who face oppression, stigma and exclusion.

Many of us have spent a good part of our lives working on important system changes (like closing institutions, creating community supports or developing systems of self-directed support) and we want to build on all of this. We want to get better at recognising and supporting positive innovation and be more effective at advocating for these changes within our societies.

However we also feel that these system changes are not enough. Even the best system can be corrupted when we lose sight of the deeper values that inspire our work and our own integrity in helping change to happen.

We need to understand what we are really trying to achieve and why it is important. So we have focused not just on self-direction, but on the broader goal of citizenship for all.

For while it would be simpler to have a narrow focus, on systems of self-direction (important as these are) we feel that this will fail to address the real challenges that we face. Even more importantly, we would fail to tap into the hunger for justice and for true citizenship that had originally inspired deinstitutionalisation and the creation of positive innovations, like systems of self-direction.

It is the values that inspire and fuel our appetite for making change happen. We believe people are ready for a more ambitious and hopeful vision of the future.

Now is a good time to stand back and think about the bigger picture. Now is a good time to break down the barriers, silos and categories that so easily divide us. Now is a good time to go deeper and seek the true source of our values. For so many of us want to live in a world where

  • difference is not just accepted, but rather it is cherished and celebrated,
  • where we don’t just treat people as if they were equal, we know that they really are equal, and
  • where everyone can be a true citizen, living a life of meaning, supported with love.

There is no better time to express these hopes and to try and act from them. The election of Donald Trump, Brexit, politicians pandering to hatred and vicious austerity policies (especially in the UK) are all signs that the old ways of thinking are not working.

We cannot be satisfied by just focusing on changing systems when the world as a whole is going backwards towards increased social injustice. We must see our lives and our work in the light of this bigger picture – no matter how challenging that may feel.

So how can we respond to the challenges ahead?

Of course it is important for all of us to play our part in the ordinary political processes in our communities, to get involved and to support those advocating justice and citizenship for all. But even if we win the occasional victory in this way this won’t help us if we do not also understand the cause of our current problems. Winning power is only helpful if we know what to do with that power.

Those of us who have been fighting to close institutions, to advance disability rights, to promote self-direction and community lives, have a special responsibility to share what we’ve learned with others. We have two generations of learning about what it takes to support real citizenship. We must share that and try to reshape the assumptions of the political landscape around it.

For instance, we could make common cause with those who face others kinds of exclusion from citizenship. The migrant, refugee or asylum seeker, fleeing terror or just trying to build a better life, faces hatred and exclusion, just as have many disabled people. Can we not work with those communities and learn from them about what they are doing to achieve true citizenship? Can we not help them stand up against xenophobia and racism?

Also, if we do advocate inclusion into community, then surely we must also pay attention to the real state of those communities. We do not want to include people in communities that are rife with poverty, insecurity, inadequate welfare systems or where there are no decent democratic structures. Citizenship is a problem for all of us; we are increasingly living in an elitist society where the only source of value is a paid job. This is bad for all of us, and in our changing economy it is hard to see how this is even sustainable. Inclusion is not enough. It must be inclusion, with justice, that we seek.

Perhaps, at a deeper level, this is also about the kind of people we want to be. Do we think the worship of money, status and power will lead anywhere good? Lives of meaning and love, lives of citizenship, are possible for all of us. But we must leave behind the shallow values and insecurities that feed our fears and tempt us to blame other people for our problems.

We must be citizens, true citizens, thinking and acting with integrity and with a concern for other people and the natural world. We must value citizenship – and explain its value to others. We must act like citizens – cooperating and taking responsibility for the communities in which we live.

We must grow and safeguard the heart of the flax – the communities that nurture and sustain us.

This, at least, is our crazy dream; and this is what led us to form Citizen Network.

You can find out more by visiting the Citizen Network website. You can join for free, and groups or organisations who want to become part of a community committed to the values of citizenship will be listed on our world map.

It is early days, there is much to do and we are bound to make some mistakes. But we have already established networks in Australia, Scotland and England and we hope to have several other countries join us shortly.

What will it do?

Well to begin with I think the focus will be on innovation and advocacy.

There is much we can do already. There are great people out there doing brilliant work. We need to learn from each other. So Citizen Network will act as an international cooperative of people and organisations who are willing to learn and share with each other – share and share alike. We hope to end the pointless competition which so often closes down innovation. Instead we will focus on how we can help make positive change happen together. Events, webinars and practical projects are likely to be early first steps.

There is also much to challenge. Sometimes we need to change systems, change laws, combat injustice. Often this is too hard for one person or one organisation. But through cooperative international action we may have the ability to exercise more influence on behalf of justice. For instance international surveys can help us better understand where progress is, and isn’t, being made.

And of course self-direction and individualised funding will still be a very big part of things – it is still our strongest suit. I very much hope we can build on the great work started in Vancouver and continued in Auckland. Perhaps we can set a new date for an international gathering.

It’s early days, but I know that others will join us. There is a hunger for a more positive vision for society and we can play a part in helping to define and share that vision.

When times are hard and when so many seem to have forgotten the meaning of citizenship and justice then we must stand up and we must reach out to each other. We must not join in with those lost in hatred, nor can we stand by, expecting someone else to solve our problem.

Perhaps the triple call of the Maori proverb is to remind us that

People are valuable – there’s no place for rejection and exclusion

People are special – each of us can live a life of love and meaning

People are powerful – together we have what it takes to build a better world

Citizen Network may not be able to solve all the worlds problems; but together we can create a world where we recognise that everyone is different, everyone is equal and everyone matters.

Join Us

* By visiting Auckland library I discovered that the kömako is most probably the bellbird and the metaphor of the flax is related to the fact that new life comes from the heart of the flax bush; to pull out the heart of the bush is to leave the bush sterile and incapable of bring forth new generations.

Why Is It So Hard? It’s Time for Action

Last year I was lucky enough to attend a ceremony in London where Jean Vanier received the Templeton Prize. Vanier (the founder of L’Arche and many other great initiatives) said to the assembled audience:

“There is a revolution going on. We are beginning to realise that everyone, every human being is important. We are beginning to see that every human being is beautiful. At the heart of this revolution are not the powerful, the wealthy or intelligent. It is people with disabilities who are showing us what is important – love, community and the freedom to be ourselves.”

This is so true. Despite austerity, despite confused and damaging Government policies, despite a culture of consumerism and ongoing prejudice – people with learning disabilities and their families continue to show that they not only belong, but they can lead the way to a better, more civilised and respectful society.

John O’Brien and Beth Mount, in their brilliant book Pathfinders, describe how the leadership that only people and families can provide, is constantly undermined by systems that keep people poor, drain them of energy and limit their potential. Yet even still, the sun keeps breaking through, for instance, they cite research from Canada where families were asked about the impact of the child with a disability in their lives:

  • More than 70% said their family was stronger
  • Almost 90% said that a wonderful person had come into their lives
  • Almost 90% said they’d learned what was really important in life
  • Over 50% said that they now laugh more

My rather childish response on first reading this was to shout: “Suck on that Peter Singer!” [Peter Singer being the eugenic philosopher who wrote Should the Baby Live? The Problem of Handicapped Infants.]

But it can still seem so hard. It can still seem so unfair. There are so many odds stacked up against families. Money continues to pour into dreadful institutional services – demeaning and abusing people. The system continues to control people, to place barriers before them and burdens on their backs.

Why is it so hard? Why do so many of the systems that should be there to help people get in the way, often doing harm, rather than good?

One concept that many of my friends and colleagues use to describe this problem is Serviceland – they picture the strange systems and assumptions of professionals, managers, social workers as a peculiar world unto itself. A world divorced from community, a world where limited assumptions have become normal, a world where small problems become huge barriers to change.

But while I recognise the truth of this description I also worry that if we are not careful we can end up further burdening families by failing to challenge services and professionals to offer the right kind of support. It may not be normal, but it is still quite possible for professionals to:

  • Listen properly and offer good advice
  • Form meaningful and supportive relationships
  • Organise assistance which the person and family can direct
  • Reduce the burdens on people’s backs

In fact I know many people who are doing this and I know many people who welcome this kind of respectful and effective support. Service providers and professionals are not the enemy – even if they spend too much time listening to the system and too little to people and families.

The question is then how can we get better at offering good help and assistance?

The most important answer to this is to put the person and their family in the driving seat. Professionals can only lead the way in emergency situations and for very short periods – ultimately power must reside with the person.

New systems of control, like direct payments and personal budgets, have made a difference here. It is now possible for people to take control and organise the support they need. This is good – it is a valid option – but surely it cannot be the case that the only way people and families can get good support is to do everything themselves.

We know that some service providers are able to offer what I’m going to call Personalised Support:

  • They work with the person to help them get a good life that has true meaning
  • They listen to the person and put them in control, but don’t leave them without support
  • They help people pick and manage their own assistants, and don’t force them to be employers
  • They create systems that are tailored to the person and keep them safe
  • They respect and protect the person’s money, they know that they work for the person

I know that there are organisations and supporters working like this all over the world. I’ve met them in Scotland, England, Canada, the USA, Finland, Australia and New Zealand and I’m sure they are many more elsewhere. There are not enough, but these kinds of organisations do exist and we need to develop more of them.

It is for this reason that the Centre for Welfare Reform has decided to start actively supporting the kinds of change that will make a real difference to people and families. Not just for people with learning disabilities, but also for older people, children, people with physical and mental health problems and many more. It is time for us to start to learn from each other – to share best practice and to set our standards higher.

To begin this process we have launched an international survey to begin to map and measure good practice in Personalised Support around the world. This first survey is targeted at service providers – we want to find out who out there is trying to do this right and what they’ve achieved so far. We want to understand the problems people face – so we can begin to work together to move things forward.

If you are a service provider then please complete our survey.

[No longer active – survey is finished – report due soon]

If you know a good service provider or an organisation trying to change then please share the survey with them too.

We are already well into the 21st Century. We cannot keep waiting for change to begin. We must start acting according to our values and beliefs. If we say that people are full citizens, if we believe in inclusion and community, then we need to get organised and start to do the work.

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.

Customers or Citizens

I put up this little item on Facebook recently and it seemed to strike a chord with lots of people. So I thought I’d share it here.

The other day I received an email asking me to answer some questions about leadership in health and social care by a major service provider. I won’t say which organisation sent me this, as that would possibly be unfair and misrepresent their true intentions. However I did find their questions so peculiar,  and so unremittingly consumerist, that I felt moved to share the questions I was asked, along with my answers:

Dear John

I’m afraid my answers may not be as useful as you’d like, because I suspect I can’t quite see how to frame the challenge quite like that. But here are my answers to your 6 questions:

Q1: The overarching question we are seeking to address is: “How do we consistently lead and deliver high quality, high impact [services] for people that lives up to the brand?”

A1: If we are too concerned about ‘the brand’ then we should be worried about our underlying values. Moreover, largely brands in our sector are complex and contested. e.g. a brand like the ‘Mencap brand’ is not necessarily a ‘good brand’ to which we’d like people to live up.

Q2: How do effective leaders in health and social care ensure that their staff are customer focussed? (Thinking about all people issues, from recruitment, performance management etc..)

A2: Customer-focus in our sector is a deeply unhelpful way of conceptualising what we are doing and why we do it. People are citizens, not customers. People do not shop for human services and they certainly don’t shop for a life. We build a good life together.

Q3: How do effective leaders in health and social care identify what their customers want?

A3: We explore what we want to achieve in life through a process of internal and real world discovery. You are either on that journey with someone or you are not. There are few effective short-cuts and those there are can come at a high cost to your integrity (e.g. misusing person-centred planning).

Q4: How do effective leaders in health and social care measure their customer’s satisfaction?

QA: I suspect that measuring satisfaction is mostly done for effect. It can be useful as part of showing people the value of an innovation, but in normal circumstances it is fraudulent, as the underlying power relations distort the value of the data. True leaders listen and respond, but mostly they empower others to act. Ideally the last thing they want to do is appear as a ‘leader.’

Q5: How do effective leaders ensure consistent quality across an organisation which may span the country?

A5: Top-down control for quality in human services leads to bureaucracy, elitism and managerialism. Its impact is to rob power from the lives of disabled people and those working closely with them. An effective organisation ‘manages’ by liberating innovators, enabling good practice and dealing urgently with real problems when they arise – learning as transparently as possible as they go.

Q6: How would leadership in an organisation which delivers consistent high quality, high impact for people differ from one where this is not achieved?

A6: Such leaders would show humility, facilitate mature conversations and seek to explore how they can improve things further.

I hope that helps.

Best wishes

Simon John Duffy

I am not sure what else to say. However I think this divide, between seeing each other as citizens, or seeing each others as customers, is fundamental. The customer model obviously connects to many modern trends (positive and negative) but it seems such a fundamentally unhelpful way of thinking about disability and human services. The fact that something seems so obviously right to some, while it seems so obviously wrong to others, is indicative of the profoundly paradigmatic issues at stake. I suspect we won’t be able to just explain our way out of this problem. I think we will need to act as citizens in order to show others what citizenship means and what citizenship can do.

Dr Andrew Lucas and Perpetual Life – A Film

I awoke this morning from my dreams with the idea for a film in my head. I am no script-writer and I will never find time to complete this project, so I share it here. If you want to turn it into a film or something else then please be my guest.

A shot of London – subtitle: Year 2166

We pan over London which now appears even shinier, and the streets are full of people celebrating the victory of England in the World Cup. An open top bus (suitably modernised) floats through the crowd. On the top are many familiar faces, including Wayne Rooney and many other members of the current England team.

Now cut to inside St Paul’s Cathedral, where there is a celebratory service going on, again we see the heads of Rooney and his team mates, we also see that the audience is full of beautiful young people, happy and genuinely attentive. They watch a young and handsome Archbishop of Canterbury who is giving a sermon.

Archbishop:

“How great is Great Britain! Yet again we are victorious at football. Yet again we prove that, truly, we are building Jerusalem here, in this green and pleasant land.

“And it is here in Britain that the great discoveries have been, the great steps forward in human progress. 400 year ago St Adam Smith uncovered the workings of the market. Only then did men come to understand that progress depends upon selfishness. This revelation then opened up the age of progress, industry and happiness.

“300 years ago St Charles Darwin uncovered the true workings of nature. Now we understand that we are not, directly, creatures of God, but of evolution, and that progress comes from the on-going battle of the strong to overcome the weak.

“Then, just 150 years ago, our living saint, Dr Andrew Lucas, made the next great British discovery.

Cut to an earnest young man sitting amidst the congregation who nods and smiles modestly in recognition of the Archbishop’s comments. Cut back to Archbishop who is continuing with his sermon.

“Dr Lucas has discovered the essence of life itself, the life force, the vital link between physics, chemistry and biology. Lucas has discovered that element of our life blood which makes life possible. Using his discoveries Britain then began its programme of extending Perpetual Life to everyone. The doors of heaven are now truly open.

“All these great discoveries have had to be matched by an evolution in our religion. Today the New Church of England has managed to uproot the heresy of life after death. We’ve gone back to the Bible and demonstrated the real meaning of Christ’s sacrifice. It was not some mysterious life after death that he was offering us – instead it was a message about the real possibility of heaven on earth. Today more and more people are taking advantage of the opportunities of Perpetual Life, as Dr Lucas and his team work to make this new technology available to everyone.

“So, let us thank God for England’s victory in the World Cup. Let us thank God for Dr Lucas and his brilliant discoveries that have made all this possible. And let us thank God for Great Britain, the country that has opened the doors of heaven.”

Congregation enthusiastically clap the Archbishop. The Camera pulls back from St Paul’s and pans to St Thomas’s hospital which is now one of the grandest building along the Thames. We are in a teaching theatre, where junior doctors are being educated, and are being addressed by a beautiful young (female) professor of medicine.

Professor of Medicine:

“Welcome everyone to your first course in the medicine of Perpetual Life. As trained doctors you will already know much of what I am about to show you; but it is always helpful to be reminded of the foundations, that underlie our vital science. So let us begin by watching this short film.”

We now watch the first scenes of an introductory teaching film on Perpetual Life. Suitable documentary images accompany the narration.

Film narration:

“In 2016 UK Parliament began the process of legalising euthanasia (or as it is now called Happy Death). The first step towards Happy Death was to allow people the right to end their life, under medical supervision.

“It was then that a brilliant young doctor, Dr Andrew Lucas, decided to specialise on end of life medicine. At first his programme focused on helping people be genuinely happy as their life ended, new drugs were developed and the process was made not just painless, but pleasurable.

“However, naturally, Dr Lucas also began to wonder whether there might not be other advantages to the Happy Death programme. A dead body can teach us much, a dying body can give up its organs to help others. But what if a living body could give up it’s very life force? What if life itself could be transferred from one individual to another?

“It was this profound insight that opened up the field of Perpetual Life (or PL). Today a willing patient can transfer their life force to another person, to extend their life and even to maintain them in state of perpetual youth and health.

“Dr Lucas himself, as a brave pioneer, first began to carry out these experiments upon himself and so he became the first person to benefit from PL. Then of course he turned to the leading minds of the time to win support. If it was not for the support of Heaven TV and the vision of its owner Mr Rupert Murdoch then his discoveries may have gone to waste. But after joining the PL Programme Mr Murdoch became its primary patron. Leading politicians joined him on the programme, and so his support grew. Today all our leading writers, scientists, film stars and sporting heroes are proud participants in the PL Programme – staying young, living longer and working to build a better world for everyone.

“Of course there are still mysteries to uncover; for just as it took many years to discover DNA, and so explain the truth behind Darwin’s theory of evolution, so we have not yet fully understood the mechanism by which the life force exists.

“Dr Lucas is continuing to work on the development of an artificial version of the life force. He will be successful; but until that time the PL programme must continue to exist in partnership with the Happy Death programme. We still need some people willing to give up their lives, in order to extend the lives of the best, the beautiful and the successful.

“We are also still limited by the constant of life – the 70 years rule. For while the life force can be transferred, the transfer value of life is set at a maximum of 70 years, and varies in accordance with how much life has been sacrificed. Life is extended by 70 minus the years already lived. So this means the most useful lives are those of the youngest.

“So while everybody wants to join the PL Programme we are not yet able to offer everyone the joys of the programme. Instead we must appeal to those who are ill, who are disabled or unhappy. We must offer them the chance to sacrifice themselves for the greater good. Fortunately the technology of Happy Death has so improved that many more people are willing to step forward and offer their lives in sacrifice. For many people a few months of extreme happiness is well worth the loss of many years of life.

“Today the systems of Quality Adjusted Life Prices (QALPs) enables people to evaluate their options and to choose to trade in their life for a Happy Death. This is a independent, market-based system, all carefully overseen by NICE (the National Institute for Care Excellence).”

“Life and death has always seemed like a lottery. The best of humanity can be unfairly struck down, while the worst can hang on for decades. Today, thanks to the expertise of doctors like you, thanks to the patronage of Mr Murdoch and Heaven TV and thanks to the good people at NICE, death is being tamed. Death is now fairer and perpetual life is possible for the brightest and the best.”

At this point the film could develop in a number of different ways. Here are three options:

  1. We follow Dr Lucas becoming angrier with himself and with the system he has created, as he discovers, yet again, that he cannot overcome the life constant or develop the life force artificially. The film follows his efforts to pull down the system around himself and the way in which powerful forces within the media, politics and economics will not allow him to do so. [or]
  2. We follow the story of one of the members of the PL community who is finding that they can no longer earn the money necessary to stay on the programme. They become convinced that the high price and limited supply of PL is a plot to enrich the rich. However, by exploring what really happens to those outside the programme, and those on the Happy Death programme he discovers that in fact everything possible is being done to extend PL to as many people as possible (e.g. people are encouraged to give up their babies for HD at birth, people are being paid to join the HD programme, their family are being assured places on the waiting list for the PL programme, mental illness and suicide are being encouraged in low income families.) He then tries to share what he’s learned – but he is discovered and he is forced to join the HD programme himself. [or]
  3. We focus on a revolutionary movement, perhaps based in the North of England (say Sheffield), where people organise to overcome the powerful forces of the PL programme. This could involve a love interest story, where there is love between someone on the PL programme, perhaps in a position of influence, and a terrorist trying to tear the system down. This could also build on the idea that heretical religious groups continue to exist underground, who continue to spread their belief that life is sacred and that everyone is of equal value.

You may have much better ideas about where to take this story. But if you decide to make a film, book or play from this idea, don’t worry I promise not to sue you. However, if you do make any money please donate some to the disability campaigners who are fighting the Assisted Dying Bill:

http://www.notdeadyetuk.org

Why We Mustn’t Murder Beethoven (or Anyone Else)

One doctor asks another:

“About the termination of pregnancy – I want your opinion. The father was a syphilitic, the mother tuberculous, of the children born the first was blind, the second died, the third was deaf and dumb, the fourth was tuberculous. What would you have done?”

“I would have ended the next pregnancy.”

“Then you would have murdered Beethoven.”

Story from Maurice Baring

The power of this story is twofold. First the story reminds us that our genetic pedigree is a poor basis for predicting talent. The doctor thinks he knows the likely outcome of the pregnancy, but he does not. Life and nature is still, thankfully, too unpredictable for such doctors to be able to predict such things.
But much more importantly the story asks us to examine our values. What if this young Beethoven had not been the great composer, but had been a child with disabilities. The doctor would have been just as wrong to end the pregnancy. The real arrogance of the doctor was to presume to judge the value of a human life, in advance and without being able to appreciate that person’s own story.

The Marriage on the Mountain – Independent Living and Person-Centred Support

This is my fourth and final blog – written in honour of the Social Care Ideas Factory’s (SCIF) event – We Chose to Climb. This event has been one of the most interesting and positive events that I have ever had the honour of being involved in: great people, great talks and great conversations.

The event was, I think, an effort to bring together many threads of thought and action – and to bring together many different groups. I cannot do justice to the full wonderful human complexity of it all in this short blog; but I did get a feeling that, at last, we might be on the cusp of achieving two important marriages – marriages that have at times seemed so unlikely and yet marriages that would be so natural.

The first potential marriage is between the ideal of independent living and the ideal of person-centred support. These are not quite the same things, and they certainly have rather different histories; but there is, at their heart, such a commonality of purpose, that a marriage could be possible.

Independent living is a philosophy of being and action that has been developed by people with disabilities (for audiences outside the UK) or disabled people (for the UK audience).

[The hazards of forming this previous sentence give some indication of how difficult it is to write about any of these matters in a way that won’t upset someone, but I think it’s important that we remember that these ideas do exist in a global context – particularly as people with disabilities have worked very hard at ensuring that independent living is linked closely to the UN Convention on the Rights of Persons with Disabilities (UNCRPD).]

People with disabilities have been advocating for independent living for about 50 years – this is not an insignificant period of time.

There are some subtle differences of definition that can occur. Independent living is certainly very closely aligned to the idea of rights. As such it is an assertion that we have socio-economic rights (an idea that the current UK Government seems to have abandoned, but which is fundamental to the UN Charter on Human Rights). But it is also an assertion that these rights have to be sensitive to the many forms of discrimination or disadvantage that occur for people with disabilities. Perhaps most importantly, it is a challenge to the welfare system, that was developed in the era of Human Rights, after World War II, that these rights must be designed in ways which respect individual choices about lifestyle, relationships and identity.

Practically, independent living was the philosophy used, by many people with disabilities, to insist that they should not have to suffer institutional living, just because the welfare state had now absorbed institutional ‘care’ services.

The philosophy of independent living is also closely, sometimes perhaps too closely, identified with all sorts of positive service developments: personal assistance, accessible buildings and transport, direct payments or individual funding. These developments have all been very good, but one danger is that we confuse the philosophy of independent living with a particular mode of living – say, living in your own accessible flat, using direct payments and employing personal assistants. Independent living, in its true sense, means living as you wish, in the way that makes most sense to you, to your relationships, to your community and to your values – it is certainly not a prescribed lifestyle.

The concept of person-centred support is not the same as independent living; its roots are more diverse, and it is rarely treated as an explicit political goal in the same way as independent living has been. The term has taken root in counselling, in support for people with intellectual disabilities and in the world of dementia. As this suggests, it is an approach that seems helpful for people who might be disadvantaged because they have difficulty expressing themselves, making choices or find the right lifestyle for themselves. In practice, whether it is through planning, therapy, conversation or action, it is an effort to respect the identity of a person who might otherwise be ignored and erased from proper consideration.

Now I must be careful here – when I say that these two concepts might marry I do NOT mean that these concepts are the same or that they might be merged into one concept. Anyone who thinks that has not been married or has not paid attention to what a marriage is. A marriage is (or should) be a respectful union of two equals. Marriage involves, negotiation, love, mutual support and joint effort – for a common good. What I mean by marriage is that these two ideas might be used to complement one another and to develop a better understanding of common problems and shared solutions.

However, it is quite natural for many people with disabilities to be suspicious of person-centred support; for it may appear to be yet another ‘trick’ of the professional establishment to prod, poke and interfere with their lives. Accepting person-centred support might appear to be a false and unnecessary admission of weakness: Don’t give me person-centredness, give me control!

Yet the greatest danger of completely rejecting person-centred support is that it can narrow the world of disability considerably. Given natural human diversity and all the inevitable frailty of the human condition – all of us need assistance and those most like to face the barriers of disability are those who need assistance with communication or decision-making, those who are locked in anger, fear or sadness and those who suffering from illness or chronic health conditions. If our idea of disability is dominated only by the image of the wheelchair then the world of disability has been radically reduced.

At the heart of person-centred support is the bold assertion that everyone has value, everyone’s life is meaningful, everyone has something to contribute. This assertion is part philosophy – an ethical commitment to the equal value of all human beings – and part methodology – start by assuming value and you will find it.

So, my claim is, independent living needs person-centred support  because, without it, there is a grave danger that too many people with disabilities will be exiled to a place where they are deemed too disabled to be disabled. This is not right and it not helpful.

I also think that we must be careful not to rely too heavily upon our rights. Rights exist because duties exist – and human history tells us that, far too often, societies can quickly become blind to their duties and responsibilities. An awareness of right and duties does not flourish unless we are also aware of ourselves as interdependent beings, with innate value, and with multiple capacities to contribute – including the contribution to community that we make when we need assistance.

But person-centred support also needs independent living. There is a grave danger that person-centred support – which does just lack the same authentic roots as independent living – will morph into another professionalised approach, and will lose its way. We’ve certainly seen signs of this in England, where the institutionalisation of “person centred plans” as the new “care plans” promised so much, but has delivered so little. Person-centred support can open up new possibilities and offers the means to nurture mutual respect; but it is no replacement for robust rights, collective political action and practical peer support.

So, we can use both ideas, they are not the same, but they each offer something valuable and distinct.

There is a second marriage that would be useful, and that is the marriage of people and professionals. Again I do not mean to abandon the obvious differences that might exist between many millions of people on either side of that line (and the very many who stand with one foot on either side of that line). Self-identification as a person with a disability or in whatever group is useful, remains an essential first step toward claiming our rights. However, there are several reasons why a marriage between such diverse groups, might be advantageous.

First, there is the obvious political issue; for there is currently no assurance that there will be any professional services, of funding for personal assistance or for personal budgets. In England ‘adult social care’ has been cut by 30% in just four years – there is little point debating the niceties of the organisation of ‘adult social care’ or ‘personalisation’ when the whole edifice is crumbling around us.

Second, there is the call from many – both people and professionals – to drop many of the professional barriers, bureaucratic systems and undue regulations that make it more difficult for everyone to lead the best lives they can. These intrusive and ineffective controls have grown progressively over the years as trust between the front-line, management and politicians has declined.

The welfare state has become bureaucratic welfare. This situation will only be reversed when people with disabilities, families and professionals – together – start to insist upon and demonstrate the value of low-bureaucracy solutions.

Third, there is the fact that the capacity to collaborate collectively, across the professional boundary, will unleash some of the greatest innovations, support and community change. I see this in all of the best social innovations today – they are all the combination of a little money, a few employees, and a great release of creative action – rooted in community action.

The challenges of these marriages – of ideas and of people – are tremendous. They mean overcoming decades of mutual suspicion and misunderstanding. It means being able to think about problems from multiple perspectives. It means including others who might seem ‘too different’ to be included. But the risk of not achieving such a marriage is even greater.

Today, at the end of the conference, SCIF launched their next collaborative project – the Sherpas Union. This project will attempt to build an international movement of all those endeavouring to improve lives, for themselves, and for others. Perhaps it could be one means to promote the courtship between these different groups and these different ideas. It’s too early to predict, but I for one will try to do all I can to help out, and I have already applied to join.

Who is Strong and Who is Weak?

This week I was lucky enough to be invited to hear Jean Vanier speak. For those of you who do not know of Vanier, he is the founder of the L’Arche movement that encourages people with and without learning disabilities to live together as equals. He is also a Christian philosopher and he was joined on the platform by Cardinal Vincent Nichols and Archbishop Justin Welby.

The title of the talk was “Living together for the common good: why do the strong need the weak?” and the event was sponsored by Together for the Common Good – an ecumenical movement to advance social justice.

However Vanier’s starting point is not ‘What makes us strong?’ instead he asks ‘What makes us human?”

He reflects on the Enlightenment account of humanity, with its ideal of the rational, competent and goal-achieving human. This ideal is central to modern thinking about the self, morality and politics – it is the all-important ‘rational I’. But he observed how self-defeating this ideal becomes. The more an individual advances, the more he must leave others behind; the more we worship such individual striving, the more people we must condemned to be left behind. We think we are building, while we’re merely destroying.

Instead, for Vanier, we must begin with acceptance and love as St Paul understands it:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.” [1 Corinthians 13:4-7]

For me this was one of the most memorable points in the evening, where Vanier – using a text that is so often rushed – points out that what comes first is patience. The modern view of love so often misses this point – it slips into that dangerous Enlightenment mode where all the focus is on what we do in the name of love. Love becomes another badge that we try to award ourselves.

We strive to do, to change, to improve – yet so often we fail to just be with each other, to meet each other and to accept each other. Movingly, Vanier told the story of a male prostitute in Australia, who, dying in the arms of a member of L’Arche, said:

You’ve always wanted to change me; but you’ve never met me.

In the process of fixing others we lose sight of our very humanity – our essential fragility, our need for love, for belonging and contribution. Humanism becomes inhuman.

This reminded me of my first experience of people with learning disabilities, in an institution in the south of England. The place and the behaviour of the staff, struck me with horror, but the more important experience for me was that it offered me a different way of being human. I was a highly competitive young man, with some modest academic abilities, and a raging desire to work, to achieve and to win. Yet, here were people taken out of that rat race, and yet fully human. Here was goodness, calmness, dignity, care, curiosity, play, challenge, suffering, and fear. Here were people who were certainly different, but wonderfully so.

For me this experience challenged my notion of who I was and what was the purpose of my life. However, paradoxically, it also turned into a mission which, for better or worse, has driven most of my decisions over the last 25 years. So I worked to help people leave institutions, take control of their lives, make friends, contribute to community – to become full citizens. It became a project – and in the light of Vanier’s critique I can see that this project is also full of dangers. It can lead one into a feeling of self-importance and it tempts one to see others as the means by which your goals can be achieved.

Vainer’s approach is different. As he put it, the mission of L’Arche is less about what it achieves (although it achieves a lot) but more about the message that is inherent in its way of being – that we must meet together as fellow humans. For in the meeting of the ‘strong’ and the ‘weak’ each are transformed. The weak may be supported, but the strong also get the chance to find out what really matters and who they really are.

In fact nobody is really ‘weak’ or ‘strong’. Instead the desire to be amongst the strong, and to avoid the weak, is just a symptom of a society’s failure to welcome all and to comprehend the true value of each individual. We are like little kids wanting to be picked for the team we think will win – and so we allow ourselves to be judged by the wrong values. We even score ourselves by these distorted values – forgetting what is really important to us, focusing instead on what is important to ‘them’.

The discussion after Vanier’s talk was also fascinating – less for its content, more for the tensions and paradoxes it revealed.

The setting was important. We were tucked away in a corner of the Houses of Parliament, surrounded by images of splendour and power. The room was packed with famous faces – journalists, Lords, politicians and others from amongst the powerful. The discussion was led by Sarah Montague – of Radio 4’s famously combative and Westminster-centric Today Programme – who, revealingly, said she thought she knew most of the people in the room (although she certainly didn’t know me, and I met one Lord who certainly didn’t know her). In other words, we were at home, amongst the strong.

Montague then endeavoured, with minimal success, to play devil’s advocate and to encourage a lively discussion in the normal style. However the Philosopher, Cardinal and Archbishop all refused to play along. Instead they reflected on the need for time, discussion and humility in the political process.

Vanier refused to play ‘political advisor’ or ‘expert’ and in this refusal he lived his principles. Yet for Montague, and I think for some others in this room, this seemed deeply disappointing and frustrating. They wanted answers, solutions and policies. They were the strong and they wanted something to give them more strength – whether it was food they could consume (the latest good idea) or at least a good argument, a test of strength.

For modern politics demands that the powerful are constantly mindful of their appearance in the media and they must, at all times, maintain the illusion that they are competent to solve any problem. The powerful are caught in an impossible trap – for they must present themselves as the answer to any question we might ask. They are the folk who stand atop the crazy pinnacle of the world that Vanier wants us to reject: a world where one can only advance by standing on the back of the other.

It is important to note that Vanier is far from attacking government, the powerful, the professional experts or the policy-makers. He is not saying they are wrong, stupid or evil. Instead he is acting out the very issue he wants people to understand: we must meet each other; we do not need to use each other.

For myself the event also cast some light on my own dilemmas. I set up The Centre for Welfare Reform in 2009 with the goal of creating an independent community to develop positive and just solutions for the problems of the welfare state. I wanted to protect and support the social innovators who were often squeezed and abused by a political system that doesn’t know how to respect the integrity of things. Yet, it has been much harder to do this than I expected.

Instead, since 2010, my work has been dominated by a goal that I certainly didn’t want – to campaign against the injustice of the current UK Government. I expected others to do this – yet I’ve found that there has been no significant defence against cuts and policy changes that target and abuse disabled people – including people with learning disabilities – even though disabled people are the number one target for cuts by Government. I wanted to be developing better solutions; instead I’ve found myself more often simply defending basic rights.

I’m not sure what this means for me personally, but the image of Vanier reminded me that the world is not a puzzle to be solved. We must live and act with integrity and love. We cannot hope to be the answer to every question. We must be true to our own gifts and find the role that is right for us.

If I had one frustration in all of this it was simply that it was so hard to challenge the rather strange assumption in the home of the powerful that that it was they – the powerful – who could be trusted to act in the best interests of people with learning disabilities.

Does it makes sense to assume the abuser will reform himself?

Today I am working as hard as I can to develop Learning Disability Alliance England – a campaigning group that brings together all the key organisations for people with learning disabilities. I do this because I feel that it is not enough to offer Government good ideas. It is not enough to wait for the powerful to want to do what is right.

I do not have enough faith that the powerful, on their own, can learn the necessary humility to transform themselves. I feel that those of us who are weak must organise ourselves to demonstrate that we are not irrelevant, redundant or unworthy. I remember the words of Rebbe Shmelke who said:

The rich need the poor more than the poor need the rich. Unfortunately, neither is conscious of it.

I do believe the ‘strong’ need the weak, but I also believe the weak need to find and express their strength – a strength which is greater than the strength of the strong if it is a strength founded in love, community and justice.

I think that Vanier’s challenge is right – his thinking and his actions maintain integrity in their humility and their orientation to the actual meeting of humans. But I also feel that the ‘weak’ cannot afford to wait for the ‘strong’ to wake up to their true needs. Mental handicap ‘hospitals’, like the one I visited, and which as Vanier rightly said “crush disabled people” had to be closed. The reason they were closed was because families, disabled people and their allies came together to work and to lobby to bring about their closure. It did not happen by accident or because of some politician.

Sometimes we do need to lobby, to organise and to join the political process. It may be dysfunctional and confused – but unless disabled people and families are present in that process too – just as they should be present at every other level of community life – then they will not be able to defend their rights or interests. The presence of people with learning disabilities within the political process may even bring some honesty and humility to that strange world.

One final thought: if you read this before 11th February 2015 please complete our survey to Quality Check Government. [Now closed]

Why We’re Launching the LDA for England

We are only 8 months or so away from the General Election of the 7th May 2015 and nobody knows who will win that election. However, over the last four years our Government has taught us that people with learning disabilities cannot expect things to get better on their own:

  • Benefits are being cut and sanctions are hurting and shaming people
  • Public services have been cut – 25% fewer people now get social care
  • Cuts target people with severe disabilities 6 times more than most people
  • The bedroom tax and the end of the ILF is making independent living harder 
  • Basic human and legal rights are ignored as Legal Aid is slashed
  • Thousands live in the likes of Winterbourne View instead of their own homes

The cuts and attacks have happened – not because of over-spending on disabled people – but because of bad management by Government and by the financial system. Instead of solving our real problems Government has falsely blamed disabled people for problems they did not create.

I must admit that all of this surprised me. I have no connection to any political party and, as someone who has worked in the public and voluntary sector for 25 years, mostly with people with learning disabilities, I did not expect this level of social injustice. It seems I had too much faith in the decency of the political classes and I expected a much stronger reaction from the Church, charities, the media and the general public. I just never thought things could get this bad.

We seem to be sleep-walking into injustice – how can we wake up? What can WE do?

The novelist Dorothy L Sayers wrote: “A government must be either servant or master. If you do not chivvy it, it may chivvy you.”

In modern English I guess that might translate as:

If you don’t stand up for yourself – then expect to be bossed around.

So, with colleagues, friends and other allies, we have decided to launch Learning Disability Alliance England – LDA for short.

LDA will be hosted by the Campaign for a Fair Society in England.

Our initial development group includes, people from:

  • People First England
  • Bringing Us Together
  • Housing & Support Alliance
  • The Centre for Welfare Reform

Hopefully others will join us as we grow.

We’re still at a very early stage and there’s still lots of details to work out;  but I thought it might be useful to offer some initial thinking about what we are doing and why.

First of all we want to make sure that the voice of people with learning disabilities is as loud and as powerful as possible. That’s why we are going to encourage every individual and organisation we can to join the Learning Disability Alliance.

Second we want as many people and organisations to work together as possible. The opinions of people with learning disabilities are the most important. But others can help. Families are often the key to helping people have the best life possible – they provide love, passion and support – we must listen to families too. And the voices of professionals and workers also count – they mustn’t become too loud or too important – but they still have much to say that can help.

That’s why LDA England is going to give every organisation a vote – BUT we will make sure that people with learning disabilities CANNOT be out-voted.

Third we are going to work with others. I had really hoped that perhaps some bigger alliance might emerge – women, families, disabled people, asylum seekers, the poor – they are all under attack and in an ideal world they would all work together. But this isn’t happening – so we must begin where we can and then reach out to these other groups.

There are one million people with learning disabilities in the UK. Most have family and friends, many have support from paid workers or professionals – together that’s probably about 5 million voters – 10% of the electorate.

Let’s make those votes count. Let’s chivvy back.

So this is our initial plan:

  1. Invite as many organisations as possible to join LDA
  2. Describe what’s wrong and what needs to change – develop LDA’s manifesto
  3. Listen to discussion and debate about these ideas
  4. Vote on our policies – making sure people with learning disabilities can’t be out voted
  5. Publish our own ideas, telling other voters and the politicians
  6. Test each party’s manifesto before the election and decide which best support people with learning disabilities
  7. Encourage as many as people to get out and vote

It’s going to be hard work – but we can do it. We’ve got 8 months to make sure people with learning disabilities get their voice heard and can challenge growing injustice.

Why not join us?

At the moment:

You can like our Facebook Page: www.facebook.com/LDAEngland

You can follow us on Twitter: www.twitter.com/LDAEngland

UPDATE

You can now sign up online: www.learningdisabilityalliance.org

The Blood Money of Charity or Why Entitlements Matter

If the present order is taken for granted or assumed to be sacrosanct, charity from the more to the less fortunate would seem virtuous and commendable; to those for whom the order itself is suspect or worse, such charity is blood-money. Why should some be in the position to dispense and others to need that kind of charity?

An infidel could ignore that challenge; for apart from faith in God there is really nothing to be said for the notion of human equality. Men do not seem to be equal in any respect, if we judge by available evidence. But if all are are children of one Father, then all are equal heirs of a status in comparison with which apparent differences of quality and capacity are unimportant; in the deepest and most important of all – their relationship to God – all are equal.

William Temple, Christianity and Social Order

This quote perhaps helps remind us that the Church has often been a powerful advocate of real social justice. Archbishop Temple does not seek to position the Church as a bestower of charity; instead he demands that society recognises the genuine rights that are created by our human needs.

He also reminds us that equality is the foundation of social justice – we simply are equal – in some profound moral sense – despite all our obvious and great differences. This fundamental equality of moral worth is central to our moral codes (whether or not you believe in God). There is also an aspiration that many of us share – to live ‘as equals’ in a community where those differences can be reconciled through our equal citizenship. The barriers to such social equality are great indeed – but the moral appeal of such equality is hard to erode – despite all the prejudice, discrimination and injustice that is such a feature of the modern world.

An example of this battle for equality is the conflict over ‘entitlements’ that rages around people with disabilities internationally. In the UK today the entitlement to social care is under a double attack: (a) funding for that entitlement is being cut by 33% (from 2010 to 2015) and (b) many local authorities are now undermining a policy position which had treated ‘personal budgets’ as the person’s money – an entitlement. Instead people find their control eroded by increasing regulations, bureaucracy and direct interference.

On the other side of the world, Australia, as it begins to implement its National Disability Insurance Scheme (NDIS), is making a globally important commitment to secure the rights of persons with disabilities in line with the UN Declaration and the UN Convention on the Rights of Persons with Disabilities. However, even in this context, policy-makers struggle with the idea that disabled people are actually owed the intended budgets – that these budgets are entitlements which belong to people:

“It’s Jack’s money, not the government’s money.”

I will not rehearse here all the arguments for treating such funding as an entitlement (I have done it elsewhere and I have the feeling I will have to have another go soon). I simply want to observe the starkness of the choice:

If we give people money they are either entitled to it or they are not. If they are not entitled to it then why are we giving it? We would be giving what we ought not to give. If they are entitled to it then it is theirs – not ours.

What is at stake here – as Temple rightly observes – is whether we are giving people what they are properly due, or whether we are just giving the blood money of charity.

Dog Fox Field

These were no leaders, but they were first
into the dark on Dog Fox Field:
Anna who rocked her head, and Paul
who grew big and yet giggled small,
Irma who looked Chinese, and Hans
who knew his world as a fox knows a field.
Hunted with needles, exposed, unfed,
this time in their thousands they bore sad cuts
for having gazed, and shuffled, and failed
to field the lore of prey and hound
they then had to thump and cry in the vans
that ran while stopped in Dog Fox Field.
Our sentries, whose holocaust does not end,
they show us when we cross into Dog Fox Field.

Les Murray, Dog Fox Field

This poem by the Australian poet Les Murray builds on the fact that in Hitler’s Germany the test for determining whether you could avoid the first gas chambers – which were built for disabled people – was whether you could construct a sentence from the words: dog, fox & field.

Some people know that disabled people were killed during the Holocaust. Few seem to know that they were the first and leading victims of the Holocaust. The technologies of death were developed on them and only later extended to Jews and many others.

I explore some of these ideas in my book The Unmaking of Man and I explore the parallels between our time and the years that led up to the Holocaust where the intentional scapegoating of disabled people, Jews and others flowed from economic anxieties, state and professional power and the abandonment of core moral values.

Disabled people, especially people with severe learning difficulties, are our moral guardians – they “show us when we cross into Dog Fox Field.”

But, What Can We Do?

The Englishman does not like rows. It is almost impossible to get him to disturb himself, unless you are fool enough to make him both afraid and angry…

To understand the point at which the English patience breaks, we have only, I think, to remind ourselves what is the phrase most often heard in the English home. And that is: “Leave it alone!” “Tommy, leave the cat alone.” Leave your little sister alone, can’t you.” “Oh leave the boy alone; he’ll grow out of it.” “Leave the young people alone to fight their own battles.” And then: “Curse these government departments, why can’t they leave us alone?” And so, with rising irritation, as the Englishman looks at the world: “Here, you, leave those wretched Jews alone.” “Leave the Poles alone, I tell you.” And finally, in quite unmistakeable tones: “Now then, you blue-pencilled bastard, you bloody well leave ME alone, or I’ll knock your bleeding block off.”

The Englishman will interfere in the world, he will have his fingers in every trade pie, he will collect countries as he collects junk, but he cannot bear to see things chivvied about, and he will not tolerate being chivvied himself… We who are the least racial of all nations, who care least about folk-customs, are the most attached to tradition and old laws. Don’t chivvy things. I know only one constant exception to the rule against chivvying. The English people have always, incessantly and unmercifully, chivvied their governments: and for a very good reason. A government must be either servant or master. If you do not chivvy it, it may chivvy you.

Dorothy L Sayers from The Mysterious English (1940) in Unpopular Opinions 

[Note – The blue pencil was the censor’s pencil – so for “blue-pencilled” read your own favourite extreme swear word.]

Dorothy L Sayers is well known for writing the Peter Wimsey detective stories; she is much less well known for being an excellent Christian theologian, feminist and translator. Her writings are always sharply realistic and radical (in its primary sense) while also being imaginative and rich. Some of you may not forgive her for her old-fashioned English prejudices, but, as this is from a wartime speech, perhaps most of you will.

This passage stayed in my mind because of the idea that we must chivvy government unless we want to be chivvied ourselves. I wanted to use this idea to help me think about what we can actually do to challenge the outrageously unfair cuts and income reductions being targeted at disabled people.

I have argued previously that the most extreme attack on disabled people in living memory is being disguised by the language of austerity. The reason that the cuts target disabled people is political, not economic, and it is rooted in the failure of the current democratic system to protect minority groups. I have also argued that the success of this intentional government strategy has been made possible because so many groups have become complicit with it (even if they privately disagree with it). Civil servants in the DWP, social workers, local authorities, voluntary organisations, charities and even some disability advocacy groups are all drawn into the business of implementing or (as some see it) ‘mitigating’ the impact of a fundamentally unjust policy.

The lesson of history is that we rarely forgive those who try to justify their actions by claiming they were joining in with something wicked in order to make it a little less bad.

But, what can we do?

As Sayers observation reminds us, the answer has to be political – and this can’t just be left to normal opposition politics. We must use every means available to chivvy our own government, and we certainly should not stop simply because they have managed to get unjust laws passed.

The Labour Party has, so far, been muted in defending the rights of disabled people – but it has now agreed to hold an opposition day debate early in 2013 to discuss the government’s failure to assess the combined impact of its policies on disabled people. So perhaps we are seeing some new signs of moral life. Or perhaps the Labour Party is finally beginning to believe there may be some votes to be found in defending the rights of disabled people. Whatever the reason, it is vital that we do whatever we can to make the cause of disabled people politically attractive. This means presenting politicians with what they value: statistics and stories – particularly when the latter comes with attractive photo opportunities.

So, Strategy One must be to make our case in terms that can be used by supportive politicians. This does not just have to be the Labour Party. Nationalist parties, the Liberal Democrats and even the more thoughtful members of the Conservative Party need the ammunition by which to fight the necessary political battles.

The media have also been very disappointing in their coverage of the assault on disability rights. Coverage has been negligible and confused. Even serious journalists like John Humphrys have been fooled into taking the idea that the government’s welfare reforms are serious attempts at reform. Few seem to follow the logic of the government’s declared fiscal intentions. You cannot reduce poverty, reduce inequality or improve incentives for the poorest by cutting the benefit bill. The answer lies in radically redesigning the whole tax and benefit system. The coverage of social care has been even more extraordinarily complacent. In 2010 the government declared it was ‘protecting social care’, while putting in place a budget that ensured social care will be cut by 33% in real terms by 2015. Already over £4 billion has been cut from services for children and adults with the highest needs. Yet no journalist seems to have thought that this act of deception was a story worth telling.

I have now completed a major report on the cuts, and how they target disabled people. I produced this report on behalf of the Campaign for a Fair Society because I believe we need to support campaigns like this, ones that offer a positive alternative to current injustice.

The main findings are in this info-graphic:

But again, there are signs that the times may be changing. There are now growing numbers of media stories about the impact of the cuts on disabled people. The nonsensical claim that our economic woes can be solved by taking money from the poorest, to pay off debts created by the better off, is also starting to appear even more absurd as the economic crisis continues.

So, Strategy Two must be to help journalists to find the stories that will engage newspaper readers and television watchers. Statistics and human stories are likely to matter most. But we also need to support and encourage any spokespeople from the disability movement who can effectively connect to ordinary people’s concerns and to help people see through the lies and statistical manipulations the are being used to justify these cuts. The Spartacus community and their many friends are already showing us how effectively this can be done, even on very limited resources.

However this touches on one of the most profoundly difficult issues that the disability movement will need to address: who are its leaders? The problem of collusion is here acute, because many organisations have found themselves so dependent on government funding that they dare not speak out against what is happening. Moreover, many organisations, who might appear to be independent of government, are really satellite organisations – effectively owned and controlled by government. Some of these organisations, big charities, quangos and sub-contracted consultancy organisations, present themselves as speaking for disabled people, older people, social care, or whomever. But they have been been utterly quiescent.

It may be useful to picture this problem in more old fashioned terms. The king always has noblemen and courtiers, who jealously guard their access to the king and who try to act as the conduit by which messages from outside reach the king. No courtier worth his salt would allow a common peasant to gain access to the king and to present his case directly. Moreover, in fairy stories, the sign of a good and just king has always been that he would not allow himself to be blinded by the encircling courtiers who compete for his attention but would always speak directly with his people.

Perhaps we should remember this and try to ensure that we are not short-changed by government funded spokespersons. Sometimes it is best to say ‘I will speak for myself.’

So, Strategy Three might be to make collusion with government more expensive and less attractive. For instance, organisations who have failed to adequately represent the interests of those they should be protecting could be named and shamed. A boycott could be organised of any organisation that declared itself to be representing disabled people, but which did not meet a reasonable standard for honesty and forthrightness. In other words, we should not put up with quangos and charities that don’t chivvy.

Another approach that we could explore is direct action. Getting large numbers on the streets certainly may help – but is unlikely to be decisive. (Reductions in disability income also make it harder and harder for people to be able to take this kind of direct action.) Perhaps the key is to focus on areas where the madness of the government’s strategy is easiest to expose.

So, Strategy Four would be to find forms of action that underline the absurdity of a policy which tries to solve a problem of household and government debit by robbing the very people who have no money. It occurs to me that one approach might be to focus on something like social care charging – or what it really is – the disability tax. As it currently stands disabled people could refuse to pay this tax and CEOs of charities supporting people who pay it could also refuse and could take personal responsibility for this. If CEOs and disabled people were to be sent to prison for non-payment we would certainly have the best possible new story:

Government jails people (at £40,000 per head) for refusing to pay a grossly unfair tax (far more unfair than even the poll tax) and one that costs almost as much to collect as it actually raises. 

Historically the refusal to pay an unjust tax has often been an effective form of civil resistance. But perhaps there are better forms of direct action and perhaps, if we are lucky, the public will finally wake up to what is being done in its name without such extreme methods.

To end, I want to return to my wartime theme and two important, but relatively unknown, events. Few people seem to know that the Holocaust began with attacks on disabled people. In fact the first gas chambers were designed for disabled people. Only after murdering over 100,000 disabled people inside institutions were these gas chambers packed up and sent East to the concentration camps, to be used on the Jews. It was strange and disturbing to notice that, when a short documentary on eugenics was presented during the BBC 2012 Olympics, no mention was made of these facts.

Most people also do not know that Denmark, despite being occupied by Germany, managed to protect almost all its own Jewish population, and also the Jews that had fled there from elsewhere. The Danes can be very proud that they did not collude, they resisted. When the Germans finally imposed martial law in order to murder Jews living in Denmark there was widespread action to hide and protect people, with Danish fishermen taking many to protection in Sweden. Even living under martial law, Danish civil servants harried their German counterparts to ensure that captured Jews were sent to the Theresienstadt. In the end only 51 were killed.

This may seem an extreme way of presenting our options, but this is our choice. We will either collude, and go quietly along with government, deciding that our own jobs, homes and families are more important than them, disabled people. Not realising that the them are us. Or we resist. We find the courage to stand-up for others, even when they are do not seem the same as us. There is no middle ground which isn’t collusion.

So, Strategy Five might be to find some form of campaigning which would enable many more people to express their revulsion at what is being carried out in their name. To do this we need to reach out beyond our own networks and groups and to get into streets, markets and homes. Perhaps it would be worth using an old fashioned method like a national petition which we could get hundreds of thousands to sign. Developing such a petition would even be a good mechanism for distinguishing the groups that were prepared to resist from the groups that were happy to collude.

This all needs more thought, but here’s my first draft for a national petition:

We call on the government to reverse the Welfare Reform Act, to increase social care funding in line with funding for the NHS, to end the disability tax (so-called social care charging) and to redesign the welfare system so that its fair for everyone.

I am sure someone else can do better than this – but I do think its time to clarify what we are fighting against and what we want in its place. We cannot chivvy government without some powerful and clear messages – and messages that could have political impact.

We also cannot make this work without real people in local communities being able to organise and lead practical campaigning. But here the disability movement does have strength. For example, in Doncaster (the seat of Ed Milliband) the are at least two active, utterly independent and powerful groups: Active Independence and the Personalisation Forum Group. If groups like these could join together in a national network around some shared messages then the impact could be very powerful.

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