Simon Duffy

Thoughts, Bemusements & Arguments

Tag: diversity (page 1 of 2)

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.

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.

The Self-Sacrificing Gene

I am no expert in biology but something struck me recently. As I understand it there is a natural process of change which goes by the name ‘evolution’. It is by this process of evolution that plants and animals change from generation to generation and how new kinds species come to exist – new kinds of being.

It also is by this same process that some kinds of being stop existing – become extinct.

For many hundreds of years human beings have realised that evolution is real – but in more recent years we have started to believe that we have now come to a deeper understanding of how this process works.
The survival of the ‘fittest’

Darwin proposed that organisms compete for resources. Organisms – are deemed successful if they can find a way of surviving in any given environment. This process can even be imagined as a kind of competition. For resources are finite and some organisms seem to be more effective at seizing these resources: light, minerals, water, vegetables, meat. [Although, interestingly, ‘taking’ is actually a process of transformation into food, energy, growth – not taking to hold.]

However to call this a competition is peculiar; for the goal of this supposed competition is not to win anything, not even to survive, but merely to generate others beings who are as similar to yourself as possible. An ape that has become extinct on the way to creating humanity is deemed to have failed; while humanity, who so far has only evolved into more of humanity, is deemed to be a success.

So, paradoxically, this means that success in these terms means not evolving – just outlasting other kinds of organisms

Genetics
More recently scientists have identified a certain molecule that exists in all living organisms – DNA. This molecule is very important because it seems to hold the information which defines what kind of organism it will go on to create.

As far as I can understand it there seem to be a number of ways in which DNA and the genetic information it holds can change over time. But all of these seem to involve the destruction of the original molecule. Not just evolution, but life and growth, all seem to depend on a process of destruction, of the very materials from which it starts.

So, again, it is somewhat strange that a term like the ‘selfish gene’ has become so dominant. For it seems rather that it is a process of dramatic self-sacrifice that underpins life – not the selfishness of the gene. Similarly, while we might say we have children in order that we can somehow, reproduce ourselves – in fact we are not reproducing ourselves at all. We are creating something new and different – and where sex is involved we are creating something which is inevitably different because it is also going to be like our partner.

Metaphor

As I write this I can almost hear all true scientist groaning at my seeming incomprehension:

Of course this is not really ‘competition’. Of course this is not really ‘selfishness’. These are just metaphors – we are appealing to concepts with which people are familiar in order to explain complex natural phenomena.

But it is surely worth asking why these metaphors were chosen. Darwin could have talked about the Christian nature of reality –  life being intimately bound up with love, self-sacrifice and rebirth. Or he could have taken a more pagan perspective – the fragility and creativity of life, creating new and diverse forms of life out of the old. Similarly, Dawkins could have talked about the heroically altruistic gene – an object that destroys itself for the sake of others.

As Hegel, Lewis and many others have noticed – all language is in fact rooted in metaphor – strange as that seems. There is no pure non-metaphorical language, and how we choose to describe reality is important and reflect our underlying values and assumptions. The wonderful writer, Marilynne Robinson writes of this issue:

The notion of “fitness” is not now and never has been value neutral. The model is basically physical viability, or as the political economists used to say, physical efficiency. 

She goes on to cite Darwin:

With savages, the weak in body or mind are soon eliminated; and those that survive commonly exhibit a vigorous state of health. We civilised men, on the other hand, do our utmost to check the process of elimination; we build asylums for the imbecile, the maimed and the sick; we institute poor laws; and our medical men exert their utmost skill to save the life of everyone to the last moment. There’s reasons to believe that vaccination has preserved thousands who from a weak constitution would formally have succumbed to small pox. Thus the weak members of civilised society propagate their kind. No one who attended to the breeding of domestic animals will doubt that this must be highly injurious to the race of man. It is surprising how soon a want of care, or care wrongly directed, leads to the degeneration of a domestic race; but expect in the case of man himself, hardly anyone is so ignorant as to allow his worst animals to breed.

Robinson demonstrates that, contrary to many modern accounts, eugenics – the barbaric notion that human beings should be bred towards some madman’s notion of perfection – was always part of Darwin’s thinking. It was not just the result of the twisted thinking of Francis Galton – Galton was just putting Darwinism into practice.

I have written elsewhere of the dangers of eugenics – and of how likely we are to see its resurgence. I will not repeat these warnings here. Instead I’d just like to offer the thought that we don’t need to reject evolution in order to reject the metaphorical (and metaphysical) wrappings provided by Darwin, Galton and Dawkins. Again Marilynne Robinson’s observation is acute:

The Creationist position has long been owned by the Religious Right, and the Darwinist position by the Irreligious Right. The differences between these camps are intractable because they are meaningless. People who insist that the sacredness of Scripture depends on belief in creation in a literal six days seem never to insist on a literal reading of “to him who asks, give,” or “sell what you have and give the money to the poor.” In fact, their politics and economics align themselves quite precisely with their adversaries, who yearn to disburden themselves of the weak, to unshackle the great creative forces of competition. The defenders of “religion” have made religion seem foolish while rendering it mute in the face of a prolonged and highly effective assault on the poor. The defenders of “science” have imputed objectivity and rigour to an account of reality whose origins and consequences are indisputably economic, social and political.

Those of us who care about justice and truth – whether or not we are Christian, atheist or of some other faith – do not need to pick between the idiocies of the “Religious Right” or the “Irreligious Right”. We are beings whose essence is love, and who must live together with love, if we are to live at all. We are beings whose essence is dependence, and who must respect the world from which we draw life, and which demands our attention and care. We are beings who are wonderfully diverse in our being, and who must celebrate and nurture that diversity within ourselves and others.

Instead of rejecting evolution we must treat it as an aspect of the moral universe in which we live.

Use and Abuse of Standards

To have standards or regulations imposed upon us means we all cannot succeed; some will make it and some will fail. It is by the nature of such measures that they must divide us into sheep and goats.

The only standards that we should really accept are those we willingly accept. Only the standards that we set for ourselves can keep pace with our own learning.

Of course society does need valid tests; but these should be as objective as possible. For instance, Charles Handy compared the UK’s driving test with its exam system:

  • The first test is objective, we take it when we are ready, and it tells us something useful – you really can drive – these kinds of tests are much harder for politicians to corrupt.
  • The second is a system of ranking, which we are herded through whether we are ready or not – and it has proved very easy to corrupt.

A driving test is a standard that we can measure ourselves by. Music exams have also remained robust – you take each Grade when you are ready to pass it.

But an exam system which seeks to grade us and which is also taken as measure of the success of the school or the area or the government becomes corrupt. Perhaps systems that try to test both the person and yet which are somehow taken as a measure of the system’s own successfulness seem prone to collapse under their own inner contradiction.

Diverse People Need Diverse Communities

Then he [Charles Martel] again: “Would man not be worse off
Below if he were not a social being?”
“Yes,” I replied, “and here I need no proof.”

“And how could that be so, if men on earth
Did not live diversely with diverse functions?
It cannot if your master [Aristotle] writes the truth.”

So he continued logically like this,
Then he concluded: “Now it follows that
The roots of your effects must be diverse:

So one is born a Solon, Xerxes one,
And one, Melchizedek, another he
Who, when he took to flying, lost his son.

Whirling nature, who puts her seal upon
The mortal wax, does her work well, but favours
One lodging no more than another one.

And so it comes about that Esau is
Estranged from Jacob in the womb, Quirinus, [Romulus]
Although base-born, is thought to come from Mars.

Those engendered would have to take the road
Taken by those who have engendered them,
Did not divine provision override.

Now that’s before your eyes which was behind,
And so that you may know how you delight me,
Here’s a corollary to wrap you round.

Face any nature with discordant fate,
And like a plant outside its proper climate
It cannot fail to yield a poor result.

And if the world down there only paid heed
To the foundations which are laid by nature,
And built on them, then people would be good.

But you’re perverting to religion such
As are born fitter to gird on the sword,
And fashion kings from men who ought to preach:

And so you wander off from the right road.”

Dante, Paradise VIII

I suspect Dante is not to everyone’s taste, but he is to mine, and this thought is one of his most important. At its heart is this simple but profound point – we are all made different. And this means that what we need to thrive – to make the most of natural talents and needs – is also going to vary.

However if we don’t recognise this simple truth then the dangers are great. For people will be mismatched in their work or their other roles.

Of course we cannot know, just by looking, what someones’s nature demands. The process of living is the process of finding out what does and does not work for us. But if we care about our own development, or the development of those we love, or the development of our fellow citizens, then we must care profoundly about the opportunities that society creates that allow people to explore for themselves what is the role for themselves.

But this requires two things – freedom and diverse communities.

I think this is a much healthier way of thinking about that rather dubious good – ‘social mobility’. Too often social mobility is defined in a class-bound and hierarchical way: how do we help people go upwards? (although defined in this silly way it must also logically mean: how do we help people go down?).

Dante offers us a different challenge: how do we build a society where everyone’s talents are recognised where there’s a positive role for everyone?

The Right to be Different

Human groupings have one main purpose: to assert everyone’s right to be different, to be special, to think, feel and live in his or her own way. People join together in order to win or defend this right. But this is where a terrible, fateful error is born: the belief that these groupings in the name of a race, a God, a party or a State are the very purpose of life and not simply a means to an end. No! the only true and lasting meaning of the struggle for life lies in the individual, in his modest peculiarities and in his right to these peculiarities.

Vasily Grossman in Life and Fate

I like this thought. Political philosophers rarely assert the value of this right – the right to be different.

Some, like Hobbes, see society as developing out of our basic needs for protection. Others, like Locke, see it as the rational requirement of our fundamental rights. Burke and other’s might see society as having a value in itself, as the transmitter of values through the generations. But rarely do philosophers proclaim the value of difference itself.

Grossman’s point is useful because he sees that the individual’s proper commitment to the group must be a reflection of the needs of individuality itself – it is my unique place in community that I expect society to respect and sustain. If society cannot respect and support that very individuality why must I support it? If I must become not I in order to be valued and protected then I have no reason to commit myself to society.

It is curious how careless we are of diversity and true individuality in our thinking about society. All too quickly some rationale becomes the new god for society – and we must sacrifice ourselves for that artificial idol. I think that part of the reason that Judaism was so opposed to idols was precisely to protect the individual from this kind of mad social coercion.

Everything that Lives is Unique

Among a million Russian huts you will never find even two that are exactly the same. Everything that lives is unique. It is unimaginable that two people, or two briar roses, should be identical… If you attempt to erase the peculiarities and individuality of life by violence, then life itself must suffocate.

From Vasily Grossman’s Life and Fate

These words come from the opening sections of Grossman’s amazing book – I cannot think of a better novel for exploring the horror of the twentieth century. Grossman’s story encompasses the Holocaust, the Gulag and the reality of war. Somehow, amidst all this negativity, he also manages to identify glimpses of light and goodness. In opposition to the mad grandeur of the architects of evil – goodness exists in the humble, the kind and the ordinary.

Life is freedom and freedom is diversity and the refusal to submit to the order defined by the powerful.

As the twenty-first century takes shape we can see that the old battles remain. But today the fight is not so much against the numbing power of the state – rather it is against our own fears, anxieties and prejudices. Can we trust ourselves and each other? Can we support ourselves and each other? Can we accept ourselves and each other?

The enemy of human diversity is ourselves – our own craving for a deathly comfort in conformity.

Being Different

The most promising way for a society to avoid widespread differences in self-esteem would be to have no common weighting of dimensions; instead it would have a diversity of different lists of dimensions and weightings. This would enhance each person’s chance of finding dimensions that some others also think important, along which he does reasonably well, and so to make a non-idiosyncratic favourable estimate of himself.

Robert Nozick, Anarchy State and Utopia, p. 245

This point – framed in the rather abstract language of Anglo-American moral philosophy – and made by someone with a reputation for extreme Right-wing views – is nevertheless true and important.

Put simply Nozick observes that if we seek to simplify the point of life, or the point of a society, to one value – like income, intelligence or whatever – we are bound to end up with a damaging framework for valuing both ourselves and each other. We will all be spread out across some normal curve – or other pattern of distribution – with some at the top, some at the bottom and some in between.

How much better to think of life as having plural values. We can be great at some stuff, while others are great at other stuff.

This is the recipe not just for reasonable levels of “self-esteem” for all – but a much more interesting and inclusive society.

Equality With or Without Degree

For there is no other heaven – the hierarchy admitted, there is, it seems, no hierarchy at all; no higher or lower; all is here, in the first. “Only,” and as if (lover-like) Beatrice exerted herself to explain to her lover, she seems to use an intense metaphor – “only – they have a sweet life differently, by feeling more or less the eternal breath” (per sentir piu e men l’eterno spiro (IV, 36)). The swifter ardour of that sweet immingled life is all the difference any can know; passion is their law, not place. Anything else is democracy intoxicated with itself, the moon-lunacy of equality without degree, as without equality degree is sun-madness. Even in this world, even outside love, one does not envy Caesar or Shakespeare or the God-bearer; existence is equal, function hierarchical; at every moment the hierarchy alters, and the functions re-ladder themselves upward. To know both – to experience and to observe both is perfect freedom.

From Charles Williams, The Figure of Beatrice

Understanding how to take equality is one of the most important challenges of both political philosophy and morality.

As Arendt observed there is a grave danger that the ideal of equality will be corrupted into some kind of enforced normality – what I think Williams might call “equality without degree.” If we say equal, but think normal, then all those of us who are ‘too different to be equal’ will be at risk.

The challenge is to combine equality and degree.

Williams is exploring Dante’s picture of heaven – which is (whether or not you believe in heaven) a useful intellectual exercise. In heaven there must be a fundamental equality – can you imagine yourself as somehow envious, proud or demeaned in heaven. There can be no pretence that we are ‘better’ in heaven. But we cannot all be the same – that would be hell.

Dante imagines heaven as a hierarchy of multiple perfections – the hierarchy seemed problematic, even to Dante himself; but it is then revealed as a way of understanding the beauty of our diversity.

Different People, Equal Joy

We are born into a human body and we find great joy in it. Yet there are other lives within the transformation of the ten thousand beings that are just as good and equally full of joy. 

Chuang Tze from the Tao Te Ching

Taoism recognises the value of human diversity – there is no one joy, there is no one right way of being, there is no one type of person who is the best.

From Pooling to Differentiation

If I were constructing a Utopia, which God forbid, I should describe a higher civilisation in which every human being had a hundred names; in which each had a particular name known only to a particular friend; in which there were more and not less ceremonies differentiating the various kinds of love and friendship and in which the suitor had to go through ten names before he got to Glory. That would be a Utopia really worth constructing; for it would be a real question of construction. Most of the Utopias represent only a dull sort of destruction; the sort of destruction we call simplification. It would really be something like fun to invent a ritual; but since the neglect of religion, no man has really had the courage to invent a ritual. It would be a great lark to draw up a code of law, decorating Tom, Dick and Harry with their Seven Secret Names. But these things will not come until the modern world has realised that its cure lies in distribution and even in differentiation; and not in mixing up everything together in one great mess. Comradeship has become a sort of Combine; bearing the same relation to true friendship that a Trust has to a true trade. Nobody seems to have any notion of improving anything except by pouring it into something else; as if a man were to pour the tea into the coffee or the sherry into the port. The one idea in all human things, from friendship to finance, is to pool everything. It is a very stagnant pool.

G K Chesterton from On Calling Names

Chesterton is the great advocate for the road to social justice less travelled. He believed that the path of the Fabians, the communists and the social democrats towards social justice was the same path taken by the great capitalists: to destroy diversity and so to achieve a greater centralisation of power and control in their own hands.

One hundred years later Chesterton’s path remains untravelled. But could we not rethink social justice? Could we seek fairness, while still respecting tradition, complexity and diversity? Could we build, without destroying?

People with learning difficulties have already shown us the way. People who have been excluded, victimised and disempowered, do not want revenge or some meaningless token of ‘equality’. They want to be included, to live in freedom, to be safe and to make their own contribution, in their own way. People want citizenship and world that enables them to find their own honoured place within it.

The Medicine We Bring

I believe what Native Americans believe: that every person born to this earth is born with gifts. It’s totally impossible to be born without them. No one’s birth was a mistake. We all come here with something to give. And it is in the giving that these gifts become medicine, for the world, for the tribe, for the family the school, the agency. The health and the wholeness and the vitality of any community requires 100% participation of every member of that community. 

Denise Bissonnette from Citizenship and Person-Centred Work

This is a hard truth. It demands that we ask ourselves what has been lost and what will be lost every time a child with a disability is terminated before its birth, or killed just after its birth. What is lost every time an older person or a person with disabilities is ‘hurried towards death’ or is just left, segregated, within a care home.

It seems that society doesn’t always want to take its medicine.

We are choosing to be the kind of society that only values the shallow and the temporary. We want to be happy, at any price; but we don’t want to have to show love, pay attention or take care. Perhaps we think we already have all that it takes to be human within ourselves – we just don’t need other people. Or perhaps we only value the famous, the rich and the powerful.

But, if this is so, we are on a long journey to deep disappointment.

True value cannot be found within inevitably scare and fleeting moments of celebrity or in the enjoyment of rare pleasures. True value lies all around us – in every moment, in every person – but it can only be found in love – not self-indulgence.

One Value of Diversity

A diversification among human communities is essential for the provision of the incentive and material for the Odyssey of the human spirit. Other nations of different habits are not enemies: they are godsends. Men require of their neighbours something sufficiently akin to be understood, something sufficiently different to provoke attention, and something great enough to command admiration.

A N Whitehead

The Odyssey of the Human Spirit may seem rather grand to modern ears. But it is a wonderful perspective on human existence.

We take diversity for granted. We do not understand how valuable are the differences between us. If we imagine stripping away the dimensions of human diversity we find that we will be left with an empty shell – nothing of value. Contra John Lennon we need our countries, our languages, diverse skills, diverse needs, different perspectives, different histories, genders and different bodies.

We know that each of us are not complete in ourselves – we each need the difference of one another.

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