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possibilities & hindrances Talk by Simon Duffy at the University of Lapland in Rovaniemi on 22nd May 2014 Citizenship of People with Intellectual Disabilities

Citizenship of People with Intellectual Disabilities

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possibilities & hindrances

Talk by Simon Duffy at the University of Lapland in Rovaniemi on 22nd May 2014

Citizenship of People with Intellectual Disabilities

• What does citizenship mean?

• Why is it important?

• How is it achieved?

• What should we do?

Introduction to Citizenship

• Citizenship does not mean having a passport

• Citizenship does not mean everybody being the same

Citizenship is the full realisation of our interdependence - the value we bring to each other in all our differences.

The lame rides a horse the maimed drives the herd the deaf is brave in battle. A man is better blind than buried. A dead man is deft at nothing.

From Viking - Havamal

We have forgotten the true meaning of citizenship…

We only have only just begun to learn how to undo the damage done by decades of institutional care

We need humility and the capacity to work together to find a better way of respecting each other and living together

At the end of the nineteenth and for most of the twentieth century it was common for people to think that people with intellectual disabilities and mental illness were very different, hardly human, and certainly not equal citizens.

The powerful eugenic movement that spread across Europe, America and the British Empire led eventually to the murder of over 250,000 people with disabilities or mental illness in Nazi Germany.

The process of de-humanisation that preceded the Holocaust had seven steps:

But the journey away from the institutions has been neither straight nor fast.

This shows spending in one part of England after the institutions were closed:

Yet people keep breaking through the barriers placed in front of them.

Social innovation by people with disabilities, families and their allies has changed the lives of

The creation of the welfare state and social rights has helped lift people from poverty and increased the capacity for wider citizenship.

But today, in the UK, the welfare state and social rights are also under attack.

In the UK we have seen a very rapid unravelling of the language of rights and inclusion - back towards the language of shame and stigma.

The Citizenship Challenge

It’s time to go back to

basics

Q: What’s wrong with Hayley?

A: Absolutely nothing

Q: What was wrong with the institutions?

What is wrong with institutions?1. Devalued lives - the institution defines your place, your role,

your purpose. 2. No freedom or control - the institution strips you of freedom

and personal authority 3. Impoverishment - economic power is nullified 4. Sheltered, but homeless - a home is more than a roof - it’s

vital to control privacy and security 5. ‘Care’ not help - ‘care’ already assumes the passivity and

lower value of the person ‘in care’. 6. Disconnected - the institution cuts you off and leaves you

within a hierarchical system where abuse becomes natural 7. Loveless - relationships have no place in the institution

Institutions strip you of every aspect of your citizenship

1. Direction - It’s risky if my life lacks meaning and value 2. Freedom - It’s risky if I cannot direct my life, communicate

or be listened to. 3. Money - It’s risky if I lack money or if I cannot control my

own money. 4. Home - It’s risky if I cannot control who I live with, my

home and my privacy. 5. Help - It’s risky if I’ve no one to help me and if I cannot

control who helps me. 6. Life - It’s risky if I am not a valued member of my

community. 7. Love - It’s risky to have no friends or family.

Citizenship is safer

We must clothe each other in our shared citizenship

A fair society makes citizenship possible for everyone by creating the right balance between rights, duties and freedoms.

We need each other

But he who is unable to live in society, or who has no need because he is sufficient for himself, must be a beast or a god. He is no part of a state. (Politics 1.2)

Aristotle

We need each other as people who are both different and equal

Aristotle explains that a community is not made out of equals, but on the contrary of people who are different and unequal. The community comes into being through equalising, 'isathenai.' [Nich. Ethics 1133 a 14]

Hannah Arendt

It is only by our making our own

unique contribution to community that

our equality through membership

becomes possible.

Being a citizen is better than being ‘normal’

it brings us together as equals but also as unique free individuals

Equal and different

Citizenship is also very practical. We can use the idea of citizenship to think about how to help someone.

We must wake up to the importance of community and citizenship for all our sakes

Citizenship is important because it means being treated with respect and dignity…

Citizens are equal AND different

All people with intellectual disabilities can be full citizens… They are often amongst the very best citizens

Everyone can be a citizen.

We don’t need spoken language. We don’t need to be clever. We don’t need to be the same as everyone else.

A fair society is where every one of us can be a full citizen. In a fair society everyone works together.

Everyone is included. Everyone is free. Everyone has rights. Everyone has duties.

Sometimes it takes extra thought

and extra work

But everyone can be a citizen

1. Purpose - set our own direction 2. Freedom - take charge of our own life 3. Money - have enough to live on 4. Home - have a place where we belong 5. Help - get real help from other people 6. Life - get stuck in and make a difference 7. Love - find friendship, love and family

There are 7 keys to citizenship

Key 1: Purpose

Demanding of man that he assumes his condition and not till his neighbour's field, he [Rebbe Yaakov-Yitzhak, The Seer of Lublin] said: "There are many paths leading to perfection; it is given to each of us to choose our own, and by following it with great dedication, we can make it become our truth, our only truth."

Elie Wiesel

Citizens have lives that are meaningful. They have a sense of purpose.

But sometimes we find ourselves living a life without meaning.

This often happens when other people take control, exploit us or boss us around.

We can lose our sense of purpose

1. Don’t believe in ourselves - we forget that we have talents, skills and gifts.

2. Waste - we waste our time, our talents and our money. 3. Alone - we may think that no one cares about us. 4. Cut off - we become isolated, unable to join in with

things. 5. Lose hope - we stop believing that things can get

better.

1. Gifts - have faith in our unique gifts and find ways to share them.

2. Resources - make the best of everything we’ve got.

3. People - find the people who believe in us and who help us find our way.

4. Community - find meaning by joining in with things that matter to us.

5. Hope - follow our dreams and don’t play safe - life is for living.

To find our sense of purpose

Do we understand what it takes to help people find their own purpose?

How does this fit with our institutional history and our institutional services?

Key 2: Freedom

I used to think that freedom was freedom of speech, freedom of the press, freedom of conscience. But freedom needs to include all of the lives of all of the people. Freedom is the right to sow what you want. It's the right to make boots of shoes, it's the right to bake bread from the grain you've sown and to sell it or not to sell it as you choose. The same goes for a locksmith or steelworker or an artist - freedom is the right to live and work as you wish and not as you're ordered to. But these days there's no freedom for anyone - whether you write books, whether you sow grain or whether you make boots.

Vassily Grossman

Citizens are free; but sometimes that freedom is lost.

People with disabilities, especially people who don’t communicate with words, often find that other people take control of their lives.

1. No control - other people make our decisions for us.

2. No confidence - we don’t feel we can say what we want.

3. No ideas - we don’t know our options, we just accept what we’re given.

4. No communication - people don’t know how to communicate with us.

5. No decisions - nothing gets done, things just keep going round in circles.

We can lose our freedom

1. Control - remember we have the right to be in control of our own life.

2. Voice - learn to speak our minds and get help to speak out.

3. Options - get good advice, get information and find out all our options.

4. Listen - we need people to listen, to really understand what we are saying.

5. Decisions - we may need a good representative or support with decisions.

To gain our freedom

Are people free? Do we give people control?

“We are obliged to surrender to the will of the strong. Big companies, cities and municipalities decide what is best for us. This is about power. Why do I feel a lack of power in my own life?” Sami Helle, before the European Parliament

Do we know how to work with others? Do we give people control?

Key 3: Money

You could no more make a city out of paupers than out of slaves.

Aristotle

Self-interest is the most powerful engine for individual and social development, in other words, social progress, in other words social justice. It is when the most disadvantaged in society have the opportunity to improve their lives in their own self-interest that change will take place.

Noel Pearson

Citizens need money, at least enough to allow us to live with dignity and security.

Too many people, especially disabled people, find themselves living in poverty.

1. Poor - we might not even have enough to live on.

2. Trapped - it can feel risky to try and earn money or save it.

3. Dependent - we may have to put up with the things other people choose for us.

4. Abused - other people can take advantage of us using our money as if it were theirs.

5. Fearful - we can feel we’ve got nothing to fall back on.

We can lack the money we need

1. Rights - we should all have an entitlement to enough money to live on.

2. Earn - we may be able to find work to earn more money.

3. Use - we should be able to use our money flexibly, to get the best out of it.

4. Manage - we may need help to manage our money well.

5. Save - we all need savings, something to fall back on.

To get the money we need

Why do people not control the money for their support?

Key 4: Home

Then the old Vainamoinen put this into words: 'Strange food goes down the wrong way even in good lodging; in his land a man's better at home loftier. If only sweet God would grant the kind creator allow me to come to my own lands the lands where I used to live! Better in your own country even water off your sole than in a foreign country honey from a golden bowl.'

The Kalevala

Citizens belong. They have their own place, a home where they are safe and secure, in a community that’s right for them.

Many disabled people, find themselves living with their families too long, or stuck in care homes.

1. No privacy - we might not be free to do our own thing, get grumpy or let off steam.

2. Wrong place - we can end up in the wrong community, not where we want to live.

3. Shut off - we can be locked in, not able to invite people in or share our home.

4. Wrong people - we can end up living with people we don’t like or who abuse us.

5. No rights - we can find ourselves with no real housing rights, at other’s mercy.

Not every home is a real home

1. Private - home is where we can unwind - do our own thing - with no worries.

2. Belong - it is best to live somewhere where we belong, that works for our whole life.

3. Invite - we should be able to invite our neighbours, friends and family round.

4. Safe - we should be able to live with people we like and never have to live in fear.

5. Secure - we should have strong rights and not fear that we will easily lose our home.

Real homes are our homes

Why do people not share the same housing rights as other citizens? Why can people not buy their own homes and live with who they choose?

Key 5: Help

There are eight degrees of charity, one higher than the other. The highest degree, exceeded by none, is that of the person who assists a poor Jew by providing him with a gift or loan or by accepting him into a business partnership or by helping him find employment - in a word, by putting him where he can dispense with other people's aid. With reference to such aid, it is said, “You shall strengthen him, be he a stranger or a settler, he shall live with you” (Lev. 25:35), which means strengthen him in such manner that his falling into want is prevented.

Maimonides

Citizens need help. Everyone needs help. Help is good.

But many disabled people are too dependent on those who help them. They get help at the price of freedom. This is bad help.

1. Controlling - sometimes people don’t really help us to do what is important to us.

2. Dependent - sometimes we are left weaker and more reliant on others.

3. Segregated - sometimes we get cut out of ordinary life.

4. Wrong - sometimes there’s no fit and the person offering help is just wrong for us.

5. Abuse - some people can even abuse their power over us.

Bad help harms us

1. Support - good help gives us what we need to achieve our own plans.

2. Teach - good help keeps us learning and making the best of our abilities.

3. Connect - good help links us to other people and builds bridges into community life.

4. Respect - good help is respectful, it is given in a spirit of equality and mutual benefit.

5. Champion - good help means having someone to look out for us.

Good help leaves us stronger

Why do people not get support from people they choose?

You can individualise everything

Key 6: Life

True love leads a man to fulfilment, not by drawing things to himself but by forcing him to transcend himself and to be something greater than himself. True spiritual love takes the isolated individual, exacts from him labour, sacrifice, and the gift of himself.

Thomas Merton

Citizenship is about making a difference. We do this by getting involved and helping make our community be a better place.

But many disabled people are excluded from community life.

1. Bored - we end up bored, living without purpose.

2. Not valued - nobody finds out what we have to offer because we’re not part of it.

3. False - some of us end up in services that are just strange copies of ordinary life.

4. Lonely - without community we make no friends and we can lose the friends we have.

5. Disconnected - without connections we are weaker and our options are limited.

No community means no life

1. Join - we will find lots more going on in our community if we look.

2. Work - our community needs us, there are always plenty of things we can do to help.

3. Fun - find the places where we are happy, we can laugh and relax, have fun.

4. Together - being part of the community is how we meet other people and make friends.

5. Power - together we can achieve so much more than on our own.

Community is where life is

Community is where life happens… Why do too many people miss out?

Give useful informationINFO

£

Connect to another individual or family

Refer to community organisations

Recommend appropriate providers

Key 7: Love

Resources multiply in networks created by intentionally building relationships that cross boundaries & serve people's deepest purposes.

Seymour Sarason

The most important thing in the world is love.

Love exists even when citizenship is missing, but true citizenship strengthens the force of love in the world.

Disabled people can love and be loved just like everyone else. But sometimes the world makes it harder.

1. Abused - we can be abused, made to have sex or be hurt in other ways.

2. Broken - we can lose our families and miss out on the chance to have children.

3. Lonely - we can have no real friends, even when we are surrounded by other people.

4. Missing out - we can miss out on sex and the chance to be someone’s lover.

5. Closed in - we can be closed in, unwilling to love, frightened of giving to the world.

It’s hard to live a life without love

1. Self-respect - we mustn’t let other people hurt, use or abuse us.

2. Family - we can be part of a family, we have the right to have our own family.

3. Friends - we can find real friends, people who value us for who we really are.

4. Lovers - we are a full human being who should be allowed to have affection and sex.

5. Giving - we can give love to the world and to other people.

Love is always possible

Services don’t need to be sterile

My Mum: “You’ve missed out sex…”

Wendy: “You’ve missed out sex…”

Action for citizenship

Positive change means doing things differently:

Innovation and creativity

These seem like Finnish strengths

Citizenship is for everyone.

We’re all equal.

We’re all different.

We’re all citizens.

Let’s make it happen.

Citizenship of People with Intellectual Disabilities © Simon Duffy 2014 Published by The Centre for Welfare Reform http://www.www.centreforwelfarereform.orgOn Twitter follow:@simonjduffy and @cforwrFor more information about citizenship join our Citizenship for All project. Just go to:http://www.keystocitizenship.com