Author: Simon Duffy
This talk was given by Dr Simon Duffy at the Scottish Parliament to mark the launch of Values into Action Scotland on 28 September 2007.
Too often people with learning difficulties are left isolated at the margins of our society.
This is an easy observation to make and few would disagree; but do we really understand the price we pay for excluding people with learning difficulties? Is this fact just another one of society’s many challenges? Or does it cut to the heart of what it means for a society to be decent?
My own view is that we underestimate the impact of this marginalisation on the whole of society. A society that excludes and isolates people with learning difficulties is a society that is built upon rotten foundations; a society that knows how to welcome and include people with learning difficulties is a society that can be strong and vibrant.
However, in this short talk I want to start with a slightly different observation: Too often political theory fails to include the experiences of disabled people, particularly people with learning difficulties.
This may seem a peculiar starting point; but I think its an important one. Political theories reflect and shape the debates that societies have about their values and purpose. If our theories are blind to certain issues and perspectives then it is likely that political and social decision-making will either be blind or short-sighted. And so I am going to begin by saying something briefly about political theory.
Twenty years ago I was lucky enough to study political philosophy at Edinburgh University under Jeremy Waldron, one of the best of contemporary political theorists. Some years ago, discussing the concept of social justice, Jeremy Waldron wrote the following:
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.
I think he is absolutely right and that trying to bring the ideal of citizenship to life in our communities and wider society must be central to any attempt to build a more decent society.
For too long the competing political theories that have dominated political debate have tended to reduce human beings to economic units. Thinkers, from both the Right and the Left, have tended to focus only upon the economic dimension of life, whether their goal has been greater efficiency, equality or growth. Moreover, too often such thinkers place human destiny at the mercy of unmanageable forces: the power of the market or the forces of history and class conflict.
This way of thinking about the purpose of human society is not only too narrow, it is deeply flawed and quickly leads us astray. To introduce the concept of citizenship into the discussion is one way of reminding us that a decent human life involves much more than what we earn, what we own or what we consume.
In fact, citizenship is a valuable political concept for several reasons. It provides a more human and a more rounded basis for understanding and achieving important social ideals.
Firstly, citizenship gives us a more meaningful and realistic concept of equality. Citizens are equal members of a society, with citizenship reflecting the equality of our inherent dignity as human beings. The equality of citizens does not imply that every citizen is the same. Citizenship mean equality without sameness, citizenship embraces diversity, because equal citizenship implies that people must have different roles, gifts, capacities and skills as citizens work together to build a decent society. In fact, difference is necessary for meaningful interaction.
Secondly, citizenship gives us a proper perspective on liberty. Citizens are free agents; what they do and how they live is not subject to ungovernable forces. But citizens are also responsible under the law, they live their lives within a framework of rules that they must respect, reinforce and develop as their understanding of what is right develops. They are independent and interdependent - not independent and isolated. Citizens use liberty, they are free to construct a better world; no final pattern is imposed from outside.
Thirdly, citizenship helps us better understand the meaning of community. Communities, real communities that are productive, mutually supportive and full of meaning, cannot exist without the citizens who create them. Active citizens are always building community whether at the level of the family, neighbourhood, business, civil society or political participation. A community is not something separate from citizenship. When citizens are active then communities are being built - when they are inactive the communities come to an end.
Much more could be said about this and we may all have different views as to whether citizenship is sufficiently active force in society today. But to illustrate the power and reality of citizenship, as I define it here, I want to provide one extreme, and little known, example of citizenship in action.
When Nazi Germany asked the government of occupied Denmark to begin their anti-Jewish programme it is said that their reply had been that the King would be the first to wear the yellow star of David; moreover the entire government threatened to resign if they were forced to enact anti-Jewish legislation. So, after failing to implicate the Danish government and people in its genocidal policies, it was only later, when Germany imposed martial law on Denmark, that it was in a position to try and extract and then murder the Danish and German Jews that were still living in Denmark.
But something remarkable happened in Denmark, something that happened in no other country under German control; the whole of Danish society organised itself to hide and protect the Jews (both those who were Danish and those who were refugees from Germany) many were also taken in Danish fishing boats to protection in Sweden. Out of 6,400 Danish jews and 1,400 German refugees the Germans were only able to capture 500 people of whom only 77 were murdered. To the very end Danish officials and citizens continued to put pressure on the German government to protect even those lost to the death camps.
This story is highly relevant. It shows a society under enormous external pressure, yet able to maintain its dignity like no other. In my view a society can aim no higher than to emulate the exceptional behaviour of Denmark during the Second World War: a country where everyone - from the King to the fisherman acted like a citizen and acted to protect not only those who were formally citizens but even those refugees that had come under their care.
This story is also relevant in another way too. The story of Danish resistance is told too infrequently; and so too is the story of the murder of disabled people in Nazi Germany. The T-4 Action, which was the murder of the “hereditarily ill” began in 1939 and led to the murder of at least 400,000 people.* This was not just another Nazi atrocity - the T-4 Action was the testing ground and logical first step in the Nazi’s programme of race improvement - or eugenics.
In fact many of the doctors, nurses and equipment that had been used to gas disabled people and people who were mentally ill were moved straight into the business of murdering the Jews. The T-4 Action was formally ended on the 24 August 1941, the first Jews began to be gassed in Auschwitz on 3 September 1941. The first commander of Treblinka, Irmfried Eberl, was a euthanasia physician.
These facts bring us closer to home and the central topic of my talk. I called this talk the challenge of citizenship because I think citizenship - both who we include and how we include people - is best tested by looking to those people who stand at the margins and who are most easily disadvantaged. The most famous political philosopher of the Twentieth Century, John Rawls, famously argued that social justice is best understood in terms of how a society treats those who are least fortunate:
The basic structure is just throughout when the advantages of the more fortunate promote the well-being of the least fortunate, that is, when a decrease in their advantages would make the least fortunate even worse off than they are. The basic structure is perfectly just when the prospects of the least fortunate are as great as they can be.
But in his more detailed account of social justice he then went onto discount disability and to focus instead upon income. I believe Rawls was right to think that social justice is best understood by focusing on those who are ‘least fortunate’ but that he is wrong to think that disabled people have nothing useful to teach us about what social justice means. For if we look directly at the interests and experiences of disabled people we get a rather different perspective on what it takes to achieve social justice.
Today people with learning difficulties still stand on the margins of our society. But if we ask people what they want what they tend to say is starkly simple and very human. People want to be in work, to have a home, to be able to contribute, to have friends, family and lovers, to be free from harassment and prejudice. Straightforward, practical human stuff - the bread and butter of everyday citizenship. How can it be so hard to achieve these modest goals? Why does it take so long to make progress?
Part of the reason must be the long history and deep roots of the oppression against people with learning difficulties. For over one hundred years the view of disability that dominated thinking in the late Nineteenth and for most of the Twentieth Century has been dominated by the eugenic view that some people are naturally better than others and that it is the job of society to ensure that we breed out disability. It was this view that accelerated the shift to the building of the large institutions that we are still in the last days of closing today. These institutions included:
There is still a myth that these places were havens, places of protection for vulnerable people. But this myth is exploded not only by listening to the experiences of people who lived into these places, not only by the documented abuse which quickly becomes endemic to institutional environments, but it is also exploded by examining the real reasons that were given for the massive investment in such places. In particular the eugenic panic that developed after World War One and grew in pace right up to the start of World War Two.
I particularly remember a visit Lennox Castle, where as the first Director of Inclusion Glasgow, I used to work to help people escape from the institution back to the community. For those of you who never visited the site it was split between two camps: one at the bottom of the hill, the other much further up the hill. Between these two camps was a kind of watchtower which marked the dividing line between the camps - with the men at the top and the women at the bottom of the hill. Should anyone stray across the dividing line it was the job of those in the tower to blow a whistle and to escort people back to ‘their camp’. But this whole inhuman nonsense begins to make sense once you realise that it was driven by the imperative to ensure that none of these ‘defective human beings’ would ‘breed.’
Things have moved on. These institutions are largely closed. Many more people now live successfully in the community, many have their own homes but many are still in smaller institutions or care homes offering limited autonomy. But progress is not inevitable and the challenge to include people with learning difficulties as full citizens will be one of those tests of character for Scotland, as for all modern societies, in the coming years.
There will be pressure to spend more money on services for people - but the evidence is that it is only when disabled people themselves start to control those resources will we start to see people take their proper place in the community - you don’t buy people citizenship, you enable people to take their own place as citizens - it is something that must be driven by the individual. Can we move to a welfare state that assumes people are citizens - not passive recipients of care?
There will be pressure to spend more on day services, respite and employment programmes that never seem to lead to real jobs. A real focus on jobs will require tackling the perverse incentives written into the current system and recognising the international evidence that all disabled people, no matter the severity of their impairment, can make a full contribution at work and in the community. Can we stop investing in silos, segregation and eternal training programmes and start to expect and enable people to find real work?
There will be pressure to regulate, register, protect and segregate people with learning difficulties - for ‘their own good’ - to keep them away from people who might hurt or abuse them. This will be despite the evidence that it is in regulated and institutional environments that people are most at risk. Can we enable people to have an active and respected presence within our communities, protected because they are seen as members, worthy of equal respect?
Finally there will be pressure to remove disabled people by subtler means: eugenic testing, illegal early abortions and allowing the death of disabled children at birth. All these are already tacitly accepted as part of modern medicine. Public debate is muted on these issues; people do not want to ask themselves whether they do or do not really welcome disabled people as full members of our society. Can we become less frightened of disability? Can we start to genuinely see the advantages of living in a society that looks for contribution and value in everybody - even those who on the face of it seem most disadvantaged?
I will end with with one final thought. The philosopher Judith Snow, a disabled woman herself, has an interesting definition of disability: a disabled person is someone who has the gift of needing help from other people. And is this not a gift? Is it not in fact part of the glue that builds community, our needs are part of what make us human and they call out for attention and action by others? A decent society will recognise this gift as a real gift, a decent society will respond by offering help, but will offer help in a way that ensures that the person who receives help is respected, in control and is a full citizen.
A society that can find and celebrate the gifts and contribution of those at the margins will be a strong society - in the sense that Denmark was strong: morally strong. A society that tries to remove or isolate disabled people in the name of strength, health, efficiency or cost will not be strong. It will be frail and weak - it will be a dangerous place to live where signs of weakness will make you fearful. There will be an undercurrent of fear within that society - however much we try to look elsewhere and discount the experiences of disabled people.
I have faith that Scotland will not be such a society. The launch of VIA in Scotland, building on the proud heritage of Values into Action, and its support from the Scottish government is a good sign and I wish VIA in Scotland good luck.
Find out more about Values into Action Scotland at:
* When I gave this talk in 2007 I used the much smaller figure of 100,000 (which was the official T-4 figure). However by reading Forgotten Crimes, by Suzanne E Evans (published by Disability Rights Advocated in 2004) I learned that the actual figure was likely to have been much larger. This is because (a) even after the official programme closed, doctors continued to regularly use euthanasia to murder patients with disabilities and mental health problems and (b) disabled people were often the first victims of Nazi murder in round ups in Eastern Europe and in the concentration camps.
The publisher is Citizen Network Research. The Challenge of Citizenship © Simon Duffy 2007.
disability, Need for Roots, politics, Global, Scotland, Article