Simon Duffy explores how the concept of citizenship can provide a valuable framework for understanding the meaning of deinstitutionalisation, self-directed support and welfare reform.

1. Windows on
Citizenship

2. 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.
Jean Vanier

3. What’s our dream for those we love?
Money? Power? Fame?
or
a life of citizenship
freedom, meaning,
contribution

4. Wendy Perez

6. 1. What is the problem with the institution?
2. What does the journey to self-direction teach us?
3. Can we build a welfare state for citizens?

7. 1. De-institutionalisation

8. South Yorkshire Asylum founded 1869

9. 1867 - Ugly Laws
established in
San Francisco

11. Edward Galton, Hereditary Genius (1869)
“If a twentieth part of the cost and pains were
spent in measures for the improvement of the
human race that is spent on the improvement of
the breed of horses and cattle, what a galaxy of
genius might we not create! We might introduce
prophets and high priests of civilisation into the
world, as surely as we can propagate idiots by
mating cretins.”
The Evil of Eugenics

14. The author Virginia Woolf

15. Christmas in Purgatory (1965)

16. Burton Blatt from Christmas in Purgatory written in 1965
“It does not require a scientific
background or a great deal of
observation to determine
that one has entered the
land of the living dead.”

17. Hadamar Euthanasia Centre

19. disabled people were the
first victims of the
Holocaust - but they were
not alone

20. The most dangerous thing -
divided by our diversity

21. How different is disability?
• Poverty
• Exploitation
• Racism
• Sexual violence
• Prejudice
• Colonialism
• Anti-semitism
• Sexism
• Homophobia
• Nationalism

22. institutions are not
buildings - they are ugly
patterns of thought - turned
into patterns of control and
oppression

23. 2. Self-direction

24. Wolf Wolfensberger on Social Role Valorisation (1998)
“The ideal service model i.e.
the one with the greatest model
coherency would be derived from
the real, primary, and urgent needs
of the people to be served, and all
of its process components would
match harmoniously with each other
and the content so as to facilitate
effective address of those needs”
Is this the right way to think about our purpose?

25. UN Declaration of Human Rights
Article 1 - All human beings are born free and equal in
dignity and rights.They are endowed with reason and
conscience and should act towards one another in a
spirit of brotherhood.
Article 2 - Everyone is entitled to all the rights and
freedoms set forth in this Declaration, without distinction
of any kind, such as race, colour, sex, language,
religion, political or other opinion, national or social
origin, property, birth or other status…
Article 3 - Everyone has the right to life, liberty and
security of person.

27. The absence of freedom is the imposition of restraint on my
deliberation as to what I shall do, where I shall live, how much I
shall earn, the kinds of tasks I shall pursue. I am robbed of the
basic quality of humanness. When I cannot choose what I
shall do or where I shall live or how I shall survive, it
means in fact that some system has already made these
a priori decisions for me, and I am reduced to an animal.
I do not live; I merely exist. The only resemblances I have to
real life are the motor responses and function that are akin to
human-kind. I cannot adequately assume responsibility as a
person because I have been made party to a decision in which
I played no part in making.
Martin Luther King
Civil Rights, Citizenship and Freedom

31. We’ve got this legacy of
great ideas and practices…
…but sometimes it feels like
we’ve got stuck

32. “The real innovators are people with
disabilities and their families” John O’Brien

33. creativity is critical
• Do I know what I am entitled to?
• Am I free to use resources flexibly?
• Will I be punished for doing more?
• Can I get help while staying in control?

34. Countries where self-directed support is happening

35. • Progress on self-direction has been slow and
fragmentary, but it’s very real
• Some groups are still excluded, but its scope
continues to expand
• Arguments are increasingly less theoretical and
increasingly empirical
• Similar obstacles to progress emerge in all
countries where self-direction develops

37. Location N Change
England - 6 Sites Phase I Report 60 -18.0%
England - 17 Sites Phase II Report 128 -9.0%
England - 13 Sites IBSEN Report 203 -6.0%
England - Northamptonshire 17 -18.7%
England - City of London 10 -30.0%
England - Worcestershire 73 -17.0%
England - Southwark 85 -29.8%
Scotland - Glasgow 12 -44.0%
USA - Denver - Disabled Children - -34.0%
USA - Florida - Disabled Children - -30.0%

39. We must beware
the drift of ideas
rooted in rights
and citizenship
into the emptiness
of consumerism

40. Origin of “Consumer” early 15c., "one who
squanders or wastes," agent noun from
consume. In economic sense, "one who
uses up goods or articles" (opposite of
producer) from 1745.

45. self-direction is not about
choice or consumption - it is
about taking our place as
creative citizens - actively
building the world we need

46. 3. Welfare reform

47. “…only legal and political
institutions that are independent
of the economic forces and
automatism can control and
check the inherently monstrous
potentialities of this process.
Such political controls seem to
function best in the so-called
welfare states whether they call
themselves socialist or capitalist.”
Hannah Arendt
The modern world needs
the welfare state

48. • It is also possible to see self-direction as one
element of a wider challenge
• Reforming and modernising the welfare state to
support citizenship and community
• Shifting resources upstream, a broader version of
de-institutionalisation - for everybody

51. However progress has not only been slow, but there are
worrying signs of things going in reverse. In the UK,
while self-direction and personalisation are official policy:
• Austerity is leading to severe cuts in disability support
and income security systems.
• Other policies, which are supposed to help people into
work have led to stigma, mental illness and suicide.
• Policies of euthanasia and eugenics are becoming
increasingly accepted as inevitable.

52. Mark Baum, The Big Short (2015)
“I have a feeling in a few years people are going to be
doing what they always do when the economy tanks.
They will be blaming immigrants and poor people.”

58. In total, across England as a
whole, the WCA disability
reassessment process during
this period was associated with
an additional 590 suicides
(95% CI 220 to 950), 279,000
additional cases of self-
reported mental health
problems (95% CI
57,000 to 500,000) and the
prescribing of an additional
725,000 antidepressant items
(95% CI 406 000 to 1 045 000).
Barr B, et al. J Epidemiol
Community Health 2015;0:1–7.
doi:10.1136/jech-2015-206209

59. The Committee is seriously concerned about the
disproportionate adverse impact that austerity measures,
introduced since 2010, are having on the enjoyment of
economic, social and cultural rights by disadvantaged and
marginalised individuals and groups. The Committee is
concerned that the State party has not undertaken a
comprehensive assessment of the cumulative impact of such
measures on the realisation of economic, social and cultural
rights, in a way that is recognised by civil society and national
independent monitoring mechanisms (art. 2, para. 1).
UN Committee on Economic, Social and Cultural Rights:
Concluding observations on the sixth periodic report of
the United Kingdom of Great Britain and Northern Ireland
24 June 2016
UN declares UK Government fails to respect human rights

60. …there is reliable evidence that the threshold of grave or
systematic violations of the rights of persons with
disabilities has been met in the State party… The core
elements of the rights to independent living and being
included in the community, an adequate standard of living and
social protection and their right to employment have been
affected… freedom of choice and control over their daily
activities restricted, the extra cost of disability has been set
aside and income protection has been curtailed as a result of
benefit cuts, while the expected policy goal of achieving
decent and stable employment is far from being attained
UN Committee on the Rights of Persons with Disabilities:
Inquiry concerning the United Kingdom of Great Britain and
Northern Ireland carried out by the Committee under article 6 of
the Optional Protocol to the Convention
6th October 2016
UN declares UK Government fails to respect disability rights

61. Other groups face similar injustices
• Migrants, refugees and asylum seekers find
themselves directly excluded from citizenship
• People in poverty, people with chronic illnesses
and mental illness are increasingly stigmatised and
controlled
• We can all become detached, disenchanted and or
excluded from community and political life

66. The Scotsman reported on 3rd February 2012:
High-earning migrants and promising student
entrepreneurs will find it easier to work in Britain as the
coalition aims to ensure only “the right people are
coming here,” the Immigration Minister has
said. Damian Green, a Conservative MP, said middle
managers, unskilled labourers and benefit seekers
would be kept out as the coalition seeks only migrants
who “add to the quality of life in Britain.”
If only ‘those’ kind of people add to the quality of
life in Britain - what about the rest of us?

67. “Today we frankly recognise that
democracy can be no more than
an aspiration, and have rule not
so much by the people as by
the cleverest people; not an
aristocracy of birth, not a
plutocracy of wealth, but a true
meritocracy of talent.” [1958]
Yesterday’s satire feels
like today’s tragedy

69. When people lose their way
Charities flourish and self-righteousness grows.
When we value cleverness and business acumen
We unleash hypocrisy and trickery.
When families fall apart
Family values are the order of the day.
As societies fall apart
They fill up with loyal patriots.
Lao Tzu - Tao Te Ching

72. progress is not inevitable -
self-direction should not be
separated from wider
battles to protect and
improve the welfare state

73. 4. Citizen Action

74. Judith Snow (1990)
from Behind the Piano
“For true community
building to take root, the
stranger and the citizens
have to make a
permanent commitment
to each other; one that
may change in form
several times but that
continues with fulfilling
interactions on all parts.”

76. 3 Really bad ideas
• My group is the best group - nationalism etc.
Donald Trump: “From this day forward, a new vision will
govern our land. From this day forward, it's going to be
only America first, America first.”
• I’m the only person who counts - liberalism
Donald Trump on not paying taxes: “That makes me
smart.”
• The best people should control the rest - meritocracy
Donald Trump: “I’m, like, a really smart person.”

80. 3 Good ideas
• Diversity - difference is good
• Equality - we’re all equal
• Community - we can come together as equals

82. Life is like a Jackson Pollock - Liz Etmanski

87. The Spirit of Haida Gwaii by Bill Reid

88. Pride + Organisation = Power

89. acting like citizens is the only
way to safeguard citizenship
- citizenship is not given as a
gift by the powerful - but it is
a gift we can give each other
by treating each other as
equals

90. 5. Citizen Network

91. We live in an
increasingly strange &
crazily interconnected
world - let’s use that

93. • Love is the most important force in society, but it
cannot be forced, bullied or incentivised.
• Family is vital to life and development, but families
cannot be organised, managed or engineered.
• We long to belong to an inclusive community, but
communities inherit the flaws of their members.
• But we can always think and act as a citizen, even
when most have forgotten what citizenship means.

94. Let’s do what citizens do…
work together for a better world

96. Let’s stop giving
our power away

98. Let’s turn the
tables and go
back through
the looking glass

99. Let’s welcome each other into full citizenship
• Advance a richer concept of what citizenship
demands
• Challenge ourselves to act to achieve citizenship
for all
• Work together to reverse injustice

100. This is the ‘stuff’ of citizenship by
which we protect our status as equals
1. 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, sharing and giving love

102. • Danish citizens saved
nearly all Danish Jews
and refugee Jews from
the gas chambers.
• After first hiding them from
the Nazis they then
manned fishing boats and
help them escape to
neutral Sweden.
• This is true citizenship

103. We do not need to accept the current distortions:
• We can reclaim the language of citizenship
• Our values give us strength to outmanoeuvre the
elitists, the greedy and the angry - the haters
• Reject anger, fear and hate and act from love

104. This strategy can be powerful
• Making citizenship central to our arguments
• Assume the validity of our models (demand
evidence from those who want to remove power)
• Share new ideas and innovations freely
• Assume our capacity to realise change without
permission

108. For those of us who value citizenship
this beautiful world of diverse people
and complex communities is a
profound source
of strength
and joy