Merci pour l'invitation madame Myriam Winance, Nicolas Henckes and Livia Velpry - je voudrais vous remercier sincèrement pour vos mots aimables de bienvenue. C'est très agréable d'être ici
Merci d'être venu à mon séminaire excuses pour avoir donné cette séminaire en anglais
‘The Brief’ , we are organizing a research seminar at EHESS (School of Social Sciences in Paris) on the topic: "Welfare organizations: practices, experiences and policies of social, medical and medico-social institutions". This seminar seeks to build an analysis of social policies based on an interest in organisations which in practice constitute the Social State, i.e. which accompany, take care of, care for... people in their daily and social lives. I give you the abstract of the seminar problematic hereunder.
Two year ESRC-funded research project; interdisciplinary involving Geography and Education. Collaboration between universities of Southampton and Dundee, and partners – nationally in England and Scotland, and locally in Southampton, Glasgow, Dorset and Angus. Very much a co-produced project – more on this later. We would like to acknowledge our partner organisations for their support, and all of their input so far.
The Community Care (Direct Payments) Act 1996 began a process of reductions in local authority provided care as some disabled people gained ‘control and choice’ over the services they wished to purchase, in the form of a sum of money to be managed and subsequently accounted for by the user.
Fewer people are now eligible > widening gap between need and availability of formal support. Plus welfare benefit cuts. Services for people with learning disabilities often seen as a ‘soft cut’. Increased role for families and friends, and advocacy organisations, to help ‘stitch together’ a ‘patchwork’ of care and support .
Existing research has focused on community ‘asset-based approaches’, engaging and empowering communities, and ‘local area co-ordination’
Demonised, impoverished and now forced into isolation: the fate of disabled people under austerity M Cross - Disability & Society, 2013 - Taylor & Francis
Is Personalization the Right Plan at the Wrong Time? Re‐thinking Cash‐for‐Care in an Age of Austerity C Pearson, J Ridley - Social Policy & Administration, 2017
Gleeson and Kearns (2001) found that when ‘community care’ was first advocated, policymakers, journalists, and even academics envisaged an ‘imagined moral geography’ of communities who are supposed to be able to care
Self-building does not have to mean picking up bricks and physically building a construction all by yourself. Less than 10% of all homebuilding projects involve the owner with the actual building process (1). Instead, most self-builders’ involvement is on the creative side of the process — formulating a design brief, selecting the builders, and choosing the fixtures and fittings. We are interested in how support is and can be designed in a more meaningful way, that gives adults with learning disabilities more of a say in the design of their support, selecting the providers, and choosing the activities and opportunities that give most satisfaction.
how the state is enabling the process, how community resources are being used (local pubs, libraries), and how local allies (parents, neighbours and friends) are getting involved.
We are interested to find out… How are adults with learning disabilities reclaiming, reimagining and experiencing support within the context of declining day centres and an emphasis on community initiatives? How do others (the state and support organisations) help in this process? How are community networks reshaping how we think about the spaces and meaning of social care and welfare? What kinds of learning takes place within such spaces?
The design of this study has already involved close consultation with individuals with learning disabilities and their representative self-advocacy groups, through the University of Southampton’s inclusive learning disability research platform (SPIRIT) and the national partnership Think Local, Act Personal (TLAP) (in England), and two local advocacy organisations and the Scottish Commission for Learning Disability (SCLD) in Scotland.
Participatory, locally-based approach: Advisory groups in four case-study areas – involved in all phases of the project. Meaningful and informed involvement of people with learning disabilities in study design. Phase 1: Scoping review of provision in four areas; identify examples of self-build networks Phase 2: Focus groups, photo-voice and interviews with people with learning disabilities – care and support provision; Ethnographies of sample of self-build networks in four areas Phase 3: Development of online resource – co-produced at workshops; short films; national dissemination events
A. Because I’ll do the washing but I need to learn how to iron my clothes. So I’ve not been doing that [inaudible 0:15:42].
Q: So all the household chores.
A: I know how to do the washing and hang the washing, and hoover my room, tidy up. I need to learn how to clean the bathroom.
We are interested in finding out more… What kinds of ‘self-build social care’ initiatives are emerging? Where are they emerging from? (Are they filling in gaps left by closure of services? ) How is support and learning achieved? Can they help individuals to learn to live independently? How do they deal with challenges? E.g. Funding, staffing issues. > so we can help other initiatives to learn.
‘Hopeful adaptation’ in social care: how adults with learning disabilities are seeking to ‘self-build’ new spaces of care and support
‘Hopeful adaptation’ in social care:
how adults with learning disabilities are seeking to ‘self-
build’ new spaces of care and support
With Melanie Nind, Ed Hall, Alex Kaley, Hannah Macpherson and Andy Coverdale
NNDR, 10 May 2019
Introduction: A transforming landscape of care
(1996 -) Personalisation emerged as a key international
disability policy goal, particularly following UN Convention on
the Rights of Persons with Disabilities (CRPD 2007)
• Led by disabled people > to promote choice and control.
• Evident in US, UK, Sweden, Canada and France.
Social Care (1980s – early 2000s)
Closure of care institutions & growth of community
care (group homes, day centres, domiciliary care)
Introduction: A transforming
landscape of care
• Personalisation, prevention and co-production at heart of UK social care policy.
• Choice and control + empowerment > some people with learning disabilities taking up
new community-based opportunities.
• For others uncertainty and insecurity: Long-term and extensive cuts to local authority
social care and support provision > closure of formal services and buildings.
Academic literature – more critical:
• Impacts of cuts > demonization of disabled people (Cross, 2013)
• Is personalisation the right policy at the wrong time? (Pearson and Ridley,
2017; Power, 2014)
• Gleeson and Kearns (2001): an ‘imagined moral geography’ of communities
who are supposed to be able to care
• Geographical studies have shown that the reality is often different, and
indeed can be hostile to those deemed ‘out of place’ (see Hall and McGarol
2012; Needham 2014)
• For some people, austerity has weakened their already small networks –
akin to living in a ‘care desert’ (Power & Bowlby, 2018)
What does it mean to ‘self-build’?
• When individuals, with the help of their allies, co-construct their own local
support networks, activities and identities, from local resources, in a
• Perhaps this could be understood as a form of ‘hopeful adaptation’ (Power
et al. 2019)? Hopeful adaptation refers to the practice of adapting to
adversity, with some promise of it becoming transformative.
• ‘Self’ is a relational concept, acknowledging inter-dependence (Bowlby et
• Some people are self-building by necessity, in adverse contexts with a lack
of state services.
Participatory research – SPIRIT platform
The idea for this project came from SPIRIT (Southampton Platform
for Inclusive Research and Ideas Together)
Qualitative Study: 4 case-study areas (2 in Scotland; 2 in England)
Southampton Advisory Group and Research team co-creating the project logo
Co-creative methods for
capturing people’s lives
Learning to ‘self-build’ – Sarah’s story
A: Mum thinks I’m not ready to move out.
Q: Okay. And how do you feel about that?
A: I told Mum last week I want to move out. She told me it would be too
much for me. I need to …look after myself first. Because I don’t know
how to clean the bathroom, and Mum told me I had to learn how to do it.
Q: So there are some things around the house that you need to learn first
before you can move out of home.
A: Because I told my mum I want my own space. They’re [mum & stepdad]
there with me all the time. Because I’ll do the washing but I need to learn
how to iron my clothes.
Learning to self-build
A. My Mum is letting me stay on my own when they are going on holiday.
Q: So that’ll be a first for you then, to be at home while they go on holiday. But your
mum feels that that’s something that you’d be able to do now?
A: I’ve got my granny if I want to phone, …and I’ve got my boyfriend, he can come
and see me.
Q: So… you feel you’ll be able to look after yourself, cook for yourself?
A: Probably microwave food. I can’t use the oven because I forget to turn it off.
Q: Okay, so you can’t use the oven. Is that something your mum’s--,
A: I can’t use the hob either in case I burn the house down.
Learning to ‘self-build’
FS1: ‘Cause I was scared to get the bus on my own, and mum took me on the bus, that’s
me, I done it on my own now.
Q1: So you feel like, so that’s helped you to travel more independently then?
FS1: Because my speech is not good, that’s why I was scared to get the bus for the first
time, and mum took me, and then I just got the bus by myself.
Q1: And then you were fine, yeah.
FS1: So I can get the bus by myself to have a day to meet my boyfriend, now my mum
Learning to self-build
So those people you meet over [in advocacy group], they know where to
go if they think things aren’t as they should be. So they can come to us,
they can self-refer to us, “Mary, could you help me please? I think I need
a new assessment because I want to change my day services.” “I don’t
think my direct payments are going right.” Whatever it is, they know
where they can go.
• Learning new life skills
• Mastering the art of travel
• Managing risk
• Finding out information
• Making friends
• Speaking up (asking for help
and helping others)
• Learning to make decisions
• Keeping busy (voluntary and/or paid work, self-advocacy)
Creating bespoke support
initiatives seeking to
facilitate lives in the
Operating in challenging
context of austerity.
Supporting self-building within
context of austerity
I have every empathy that Social Services are stretched, you know, they’ve got
no money either, they’re fighting crises, so they can’t put in to preventative
So, I think that in the meantime, if we set that as a challenge we’ve got to
keep going, we fundraise, people are very generous, erm, you know and we
rely on a lot of the goodwill of volunteers to support our work so we can
stretch what we do further and that’s really important… So it’s about using all
our resources the best way we can to ensure our sustainability. (Manager,
support initiative, rural area)
Supporting self-building within context of austerity
Part of this contract was to do-- there were some expectations in terms of
community work. Unfortunately-- and there was a hope that we could find
volunteers to be able to do that work. I don’t know why, the volunteering
environment has really dried up. It takes a lot of work to manage a
volunteer… we don’t have the capacity to do that. (Advocate, support
initiative, urban area)
Conclusion: What would Foucault make of it all?
• In an era of ‘attenuating care’ (Power & Bartlett, 2018) > importance of new forms,
spaces and relations of care and support.
• ‘Self-build social care’ – connections, relationships, networks – other people with and
without learning disabilities > also about deeper sense of socially-valued role and
identity – your place in society.
• Signs of hopeful adaptation are varied: at broader level, local initiatives to support
community participation are evolving, but others are folding.
• Similarly, personal examples of ‘hope’ are evident in some people’s lives, others are
more resigned and fed up. (Self-)Advocacy is key to making this difference.
• We are interested in finding out more…
• Is ‘self-build social care’ an appropriate way of thinking about how people
navigate this landscape of support?
• What kinds of initiatives are emerging that could be deemed to be supporting
individuals to ‘self-build’? And can they help individuals to learn to live inter-
dependently and to belong?
• Should support initiatives be celebrated in era of austerity?
• What role can/should the state play?
• Bowlby S, Mckie L, Gregory S, Macpherson I (2010) Interdependency and Care over the
• M Cross Demonised, impoverished and now forced into isolation: the fate of disabled people
under austerity - Disability & Society, 2013 - Taylor & Francis
• C Pearson, J Ridley Is Personalization the Right Plan at the Wrong Time? Re‐thinking
Cash‐for‐Care in an Age of Austerity - Social Policy & Administration, 2017
• Power A, Personalisation and Austerity in the Crosshairs: Government Perspectives on the
remaking of Adult Social Care – Journal of Social Policy, 2014, 43 4.
• Power, A., & Bartlett, R. (2018). Ageing with a learning disability: Care and support in the context
of austerity. Social Science & Medicine, 1-7.
• Power, A., Lord, J., & DeFranco, A. (2013). Active Citizenship and Disability: Implementing the
Personalisation of Support. (Cambridge Disability Law and Policy Series). Cambridge, GB:
Cambridge University Press.