Have We Achieved Citizenship for people with Learning Disabilities?

Have we really achieved citizenship for people with learning disabilities?

Talk by Dr Simon Duffy, for the Citizens of Hertfordshire, 28 January 2015

Great Leap Lecture

1. Why citizenship is important

2. How true citizenship works

3. What is the state of citizenship today

4. How do ‘we’ organise for citizenship

1. Why is citizenship important?

For thousands of years people have struggled to achieve citizenship - to be seen as an equal and for the rights and duties that go with citizenship. But, today we’ve forgotten the true meaning of citizenship. The welfare state, which should support citizenship, instead treats us as tax payers, service users, consumers or patients. This is not just wrong, it is unsustainable. It is time to see citizenship as the purpose of the welfare state and to ensure our society supports citizenship for all.

• Politics used to mean ‘community life’

• Citizens were just ‘people of the city’ or community (although admittedly not all people were allowed to be citizens)

• Now politics happens ‘elsewhere’

Citizenship seems so distant

• Voting - an activity that takes a few seconds every few years.

• Passport - the ability to leave the community (and then come back)

• Equal rights - being able to get help and protection from others.

Citizenship can’t just be about gettingit must be about giving if it is going work.

Our current understanding of citizenship is unsustainable

Sustainable citizenship

• The ideal of citizenship must have value within the community.

• The work of citizenship must be to practically welcome people into citizenship.

• The conditions for citizenship must be available to all - we must organise for it.

We regard wealth as being something to be properly used, rather than as something to boast about… Here each individual is interested not only in their own affairs but also the affairs of the community… We do not say that one who takes no interest in community life is minding their own business; we say they have no business here at all....

... each single one of our citizens, in all the manifold aspects of life, is able to show themselves the rightful lord and owner of their own person, and do this, moreover, with exceptional grace and exceptional versatility. [Pericles]

Denmark

The people of Denmark did not just save Danish Jews from the Holocaust; they also saved German refugees. This is citizenship at work.

Is this dignity?

• Dignity and respect are linked.

• Dignity means worth. We each have equal worth, but sometimes our situation causes others to treat us without worth, without respect, in an undignified way.

• Respect means seeing someone in the right way.

• Citizenship is a way of living together as equals - with mutual respect.

Mark Haydon-Laurelut and Karl Nunkoosing explored what underpins abusive or positive relationships in ‘care settings’. They argue that:

• We tend to treat the challenges of dignity and respect as merely a matter of acceptance or affection - being nice.

• But it is possible to be nice to someone and yet fail to respect them.

• Acceptance must be combined with a positive view of someone’s potential for contribution and the community’s willingness to accept that gift.

• You can like someone, and yet protect them from life.

• You can be positive without wanting to be with them - controlling them from a distance.

Alternatives to citizenship

Their analysis aligns well with philosophical thinking about community and citizenship. Broadly the alternatives to citizenship are:

• Individualism - protecting me or mine

• Collectivism - controlling them (workers, consumers, service users etc.) for their own good

A philosopher from Mars would hear a people talking like rugged individualists and pretending they didn’t need other people (neoliberals).

But he would see government taking increasing control over people’s lives in the interests of their well-being (utilitarianism).

The problem with utilitarianism• It flourishes despite deep philosophical flaws

• It dominates social science and social policy

• It seems democratic, but implies elitist control

• It’s linked to euthanasia: killing people to reduce pain

• And eugenics: killing or breeding people to improve happiness, race or IQ (pick your poison)

The citizenship alternative• Citizen is both an independent individual and an equal

member of a community to which he or she is bound by duties - responsibilities

• Thus citizenship opens up the door to reconciling our fundamental need to be respected by others - as an equal - in all our diversity.

• The dual nature of this ideal reflects the two modes of its corruptions: liberalism (individualism) or collectivism (statism)

• Citizenship remains a real possibility.

Citizenship is not the whole of life. But it is critical to the life we lead together - in community. If we ignore it we will find ourselves in big trouble.

Citizenship is not the whole of life. But it is critical to the life we lead together - in community. If we ignore it we will find ourselves in big trouble.

2. How does citizenship work?

Citizenship is also very practical

Everyone can be a citizen

Everyone can contribute

& the best support strengthens citizenship for all

We make citizenship real by1. Finding our sense of purpose

2. Having the freedom to pursue it

3. Having enough money to be free

4. Having a home where we belong

5. Getting help from other people

6. Making life in community

7. Finding love

This protects our dignity1. Our life is seen to have meaning

2. We are not on someone else’s control

3. We can pay our way - we’re not unduly dependent

4. We have a stake in the community

5. We give others the chance to give

6. We contribute to the community

7. We are building the relationships that sustain community

1. Purpose• Citizen’s have a sense of

purpose - a meaningful life

• People’s sense of meaning has many sources

• We must listen and look for meaning in the right places

• We each have purpose - we just don’t always know it

Nan & Direction

This is not person centred planning

Help & Connect in Newcastle

2. Freedom• People have a right to be free

• But we need relationships with others to be free

• We need to provide help with information, communication and good representation

• A man in a desert is not free - he’s just alone

Michael & Freedom

3. Money• People need the resources

necessary to be citizens

• The chance to earn and save

• Money for services is really the person’s entitlement

• People only do things for us for love or money - why not have both?

John-Paul & Money

4. Home• People need a home of their

own

• That means living with the people we want to

• Safe, secure and private

• Going into a home - means losing your home

Patrick & Home

Then the old Vainamoinen put this into words:“Strange food goes down the wrong wayeven in good lodging;in his land a man's better at home loftier.If only sweet God would grantthe kind creator allowme to come to my own landsthe lands where I used to live!Better in your own countryeven water off your solethan in a foreign countryhoney from a golden bowl.”

From the Finnish epic poem: The Kalevala

5. Help• Citizens need help - its not

independence that build community but dependence

• But help must be good help

• Supporters need to understand what good help demands

• If you need nobody you're no use to anybody

Trevor & Help

Individualise Everything

6. Life• Life is made by living

• Work, play, volunteering and having fun

• Life happens in community

• But it really matters that you are in the right community for you

Doreen & Life

The lame rides a horsethe maimed drives the herdthe deaf is brave in battle.A man is betterblind than buried.A dead man is deft at nothing.

A Viking Poem from the Havamal

People don’t shop for services they build stronger community.

7. Love• We all need love - life without

love is hell

• Love comes in many forms

• We need to understand how to nurture and encourage love

• Love is what creates citizenship and new citizens

Margaret & Love

In order to create there must be a dynamic force, and what force is more potent than love?

Igor Stravinsky

1.Get good at listening for direction

2.Build relationships that liberate

3.Get clear about entitlements

4.Respect and deepen roots

5.Be flexible - in the extreme

6.Get stuck into community

7.Look out for love

3. What is the state of citizenship?

Photos from “Christmas in Purgatory”

The relative risk by different environments

Purpose

Freedom

Self-advocacy

Accessibility

Communication

Advocacy

Legal Aid

Mental Capacity

Personalisation

Money

Money

Home

The care home resident population for those aged 65 and over has remained almost stable since 2001 with an increase of 0.3%, despite growth of 11.0% in the overall population at this age. Fewer women but more men aged 65 and over, were living as residents of care homes in 2011 compared to 2001; the population of women fell by around 9,000 (-4.2%) while the population of men increased by around 10,000 (15.2%). The gender gap in the older resident care home population has, therefore, narrowed since 2001. In 2011 there were around 2.8 women for each man aged 65 and over compared to a ratio of 3.3 women for each man in 2001. The resident care home population is ageing: in 2011, people aged 85 and over represented 59.2% of the older care home population compared to 56.5% in 2001. [Office of National Statistics. Part of 2011 Census Analysis, Changes in the Older Resident Care Home Population between 2001 and 2011 Release]

The total number of people receiving services in 2013-14 was 1,267,000 (down 5 per cent from 1,328,000 in 2012-13 and down 29 per cent from 1,782,000 in 2008-09). Of these, 1,046,000 received community based services (a fall of 5 per cent from 2012-13), 204,000 received residential care (a fall of 3 per cent from 2012-13) and 84,000 received nursing care (which is 3 per cent down from 2011-12). [National Statistics. Community Care Statistics, Social Services Activity, England - 2013-14, Provisional release}

Help

Life

Life

Love

4. How do we get citizenship?

Justice lives in poverty. She survives. She measures What is necessary. She honours what ought to be honoured. She seeks out clean hearts, clean hands. She knows what wealth and power Grind to dust between them. She knows Goodness and the laws of heaven.

Aeschylus

3 negative questions

• If we are not enabling citizenship for others then what are we trying to do instead?

• If we are not organised to promote citizenship then what are we organised to promote?

• If we are not acting as citizens in our work then what role are we playing?

This is not a market

This is not a consumer-led market

Origin of agora "assembly place," 1590s, from Greek agora "open space" (typically a marketplace), from ageirein "to assemble," from PIE root *ger- "to gather" (see gregarious ).

what we really need is an ‘agora’

The need for a different kind of relationship between citizens and the citizens we call professionals

A citizen who takes on a paid role on behalf of the community is bound by honour to act on behalf of that community. It is a role of extra responsibility and honour.

The Professional Citizen

• Citizens don’t compete (much) • Citizens don’t rebel (often) • Citizens do cooperate • Citizens do construct

Ursula Le Guin

“Honour can exist anywhere, love can exist anywhere, but justice can exist only among people who found their relationships upon it.”

1. Get good at listening for direction

2. Build relationships that liberate people

3. Get clear about entitlements

4. Respect and deepen roots

5. Be flexible - in the extreme

6. Get stuck into community

7. Look out for love

We do not have to acquire humility. There is humility in us.

Only we humiliate ourselves before false gods.

Simone Weil

fruitful questions flow from an understanding of your purpose

there is no tool for creativity other than your whole humanity

Hope is like a path in the countryside when many people take it then it becomes reality. (Chinese proverb)

We need to redesign the welfare system so that it supports and sustains citizenship, family and community for everyone.