Talk given in Helsinki on the progress made towards citizenship by disabled people and particularly by people with learning difficulties. Focusing particularly on the importance of autonomy.

1. Journey to Citizenship
lessons from the UK
Dr Simon Duffy ￭ The Centre for Welfare Reform ￭
Helsinki Conference ￭ 21st March 2012

2. 1 Journey’s beginning
• Understanding our past
• Why citizenship is important
• How citizenship is achieved
2 Ups and downs
• What has been happening in the UK
• What has gone well
• What has not gone so well

3. Pt. 1 Journey’s beginning
It is many years now that we meet
Germans who declare that they are
ashamed of being Germans. I have
often felt tempted to answer that I
am ashamed of being human.
Hannah Arendt

5. Nazi Euthanasia
• The T-4 Action and other
programs were used to kill
over 200,000 disabled
people
• Killed with injections, gas
or starvation
• The same doctors and
nurses moved on to set up The Cemetery at Hadamar
the gassing facilities for
the Jews

6. Eugenic Panic
• Institutions had been set
up to house ‘undesirable’
or ‘subnormal’ people
• Sexual segregation and in
Sweden and USA forced
sterilisation
• Gross abuse and de-
humanising treatment Lennox Castle Hospital,
Glasgow
were common

7. Photos from “Christmas in
Purgatory”

8. We are not standing on the
shoulders of giants...
...we’ve just stopped digging a hole

10. How was this possible?
1.Loss of moral standards
2.Feeling rootless and insecure
3.Giving control to the state
4.Looking for scapegoats
5.Stripping victim of rights
6.Making victim poor and needy
7.Putting victims out of sight

11. The end of World War II led to some
changes and a focus on human rights
but progress has been slow -
prejudice and confusion has continued

12. 40 years of slow progress
1970 - peak population of institutions
1980 - growth in residential care begins
1992 - care management
1996 - direct payments
2007 - personal budgets
2009 - last institution closed

14. In the UK we made the mistake of
thinking that the institution was the
building
...we didn’t leave the institution
behind, we took it with us

16. Good language
inclusion
normalisation
individualised
community
empowerment
Reality less good

17. Innovators and their tools
Jim Mansell - community living
Peter Kinsella - supported living
Anne O’Bryan - supported employment
John O’Brien - inclusion
Beth Mount - person-centred plans
Gary Bourlet - self-advocacy

18. O’Brien’s 5 Basic Tasks

19. Tools don’t do the work - it is the
human being that does the work
...tools just make the job easier -
but can also distract us from the
real task.

20. galvanising the positive
People - wanting better futures
Families - organising for support
Professionals - seeking better models
Community - missing contribution
transforming the negative

21. citizenship is at the heart

22. Maslow: hierarchy of need
is upside down

23. Self-realisation comes first
Maslow was wrong

24. If you wait for self-realisation until
after you’ve met all your other needs
you will have no self left to realise
...citizenship begins within us - in the
search for our purpose.

26. Achieving citizenship
1.Purpose - set my own direction
2.Control - get charge of my life
3.Money - use my own means
4.Home - as part of my community
5.Needs - with help from others
6.Gifts - to make my own contribution

28. Citizenship creates respect
1.Purpose - authenticity
2.Control - responsibility
3.Money - freedom
4.Home - belonging
5.Needs - connections
6.Gifts - contribution

29. Citizenship is the proper goal of
public policy
...we must support each other to be
the best we can be - together.

30. For more information go to
www.centreforwelfarereform.org
These slides are © Simon Duffy 2012 ￭ Publisher is The
Centre for Welfare Reform ￭ Slides can be distributed subject
to conditions set out at www.centreforwelfarereform.org ￭