Dr Simon Duffy, at the Manawanui International Conference on self-direction, argues that we can work together to advance citizenship for all. He outlines the place that self-directed support has had in advancing citizenship, but also warns of the danger of consumerism. He explores the growing threats to citizenship from scapegoating and meritocracy. He launched an international membership cooperative - Citizen Network.
2. We live in an
increasingly strange &
crazily interconnected world
3.
4. Ursula Le Guin
Honour can exist anywhere,
Love can exist anywhere,
But justice can exist only among people
who found their relationships upon it
5. • 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.
6. Since World War II there has been significant
international progress in advancing citizenship for
people with disabilities…
• Deinstitutionalisation and inclusion
• Disability rights and anti-discrimination
• Self-direction and personalisation
8. • 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
• The argument is increasingly less theoretical and
increasingly empirical
9.
10. 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%
11.
12. We must beware
the drift of ideas
rooted in rights
and citizenship
into the emptiness
of consumerism
13. 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.
14.
15.
16.
17. • 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
18.
19. I hope what follows describes
only a UK problem. Sadly, I
fear that, I may be wrong.
20. 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 the 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.
21.
22.
23.
24. 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
25. 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
26. …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
27. 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
managed
• We can all become detached, disenchanted and or
excluded from community and political life
28.
29.
30.
31.
32.
33. 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?
34. “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
35.
36. 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
37. So, let’s turn the
tables and go
back through the
looking glass
38. 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
39. 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
40.
41. • 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
42. 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
43. 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)
• Sharing new ideas and innovations freely
• Assuming our capacity to realise change without
permission
44.
45. 1. Get connected
2. Get informed
3. Learn from others
4. Share with others
5. Change the world
46.
47.
48.
49. • It is time to “gird our loins” again [girding up your loins
meant to tie up long, loose clothes so that they were
more practical when you were working or travelling.]
• Learn from the earlier battles, but don’t re-live them
• Be prepared to question old assumptions
• Make common cause with those who face similar
challenges
• Get organised and act with courage
50. For those of us who value citizenship
this beautiful world of diverse people
and complex communities is a
profound source
of strength
and joy