Ordinary hope and misplaced pillars of hope in the lives of Learning Disabled people in England and Scotland
1. Ordinary hope and misplaced pillars of hope in the
lives of Learning Disabled people in England and
Hannah Macpherson, with Andrew Power, Melanie Nind, Ed Hall, Alex Kaley, and Andy Coverdale
2. The ‘hopeful’ policy context
• Since 2008, personalisation (personal budgets and self-
directed support) have become central to government
social care policy, this has led to much reform in the sector.
• At the same time, there has been a long-term reduction in
social care budgets, closure of facilities and a tightening of
eligibility criteria affecting access to provision and the
sustainability of new initiatives.
• Understanding how individuals and groups can be
facilitated to ‘self-build’ their own networks of support and
learn to live in the community within this context is a key
challenge for commissioners, organisations and families.
• Personalisation - the right policy at the wrong time? (see
Pearson and Ridley, 2017)
3. • “……in the current climate of economic austerity, available funding to support
people with learning disabilities is no longer aligned to their care needs. Cuts in
disability services have adversely affected the well-being both of people with
learning disability and their informal carers. Individuals… have lost social
support and are experiencing increased social isolation.”
(Aikaterini et al 2018, 1)
Austerity and the lives of people with learning disabilities. A thematic synthesis
of the Literature, Disability and Society, November 2018
4. How are people with learning disabilities in
the UK building a life in the current policy
and economic climate?
This 2 year research project explores how learning disabled people are
‘building a life’ in 4 locations in England and Scotland. With a total of:
• 40 individuals representing 28 non-residential support organisations
• 8 local authority representatives (including 3 commissioners)
• and 46 adults with learning disabilities interviewed
5. Advisory group members in England and Scotland co
created ideas on collaborative table cloths for the
7. Self build social care ‘stories’
We asked individuals and support organizations how they were building a life or enabling
others to build a life. Stories we were told varied from;
The most positive
Since the advent of personalization/ closure of a day centre, I have been able to move on
from day services, find occasional work, and piece together an appropriate package of care
and support with a variety of local activities. I feel valued and supported.
To the least positive
My adult child has been abandoned by the state/ the system/ a service/ the council. They
cannot provide for their support needs (often behaviour which challenges). Care workers
choose easier jobs so I cannot find a suitable personal assistant. I do an 80 mile each way
trip to a service once a week that will take them. I don’t want them in a residential facility
but I cannot go on like this.
8. Some people struggled to identify their
own hopes and seemed to expect little
‘Annie: Fridays, Saturdays and Sundays ‘I just chill out’
Q: What do you do at the weekend, is there anything you do regularly? or do you go to
A: Not really, no.
Q: Do you get out of the house much?
A: Not really, no.
Q: Any sports, go swimming or--,?
A: Well I need to start going swimming actually……..But the trouble is, there’s not
enough people for me to go swimming with, I need more people that can actually go
swimming with me, ‘cause recently the people who did take me swimming which was …
Robin and Evie they obviously can’t so I need someone who can actually take me
9. Some people struggled to identify their
own hopes and seemed to expect little
Q: So Robin and Evie can’t take you swimming anymore?
Q: And why is that do you think?
A: ‘Cause, one, Evie has got an injury, and two, Robin is actually busy at the other houses, so it’s quite difficult….and I
need someone that can actually take me swimming, ‘cause that might--, ‘cause swimming is actually good exercise for me,
it loosens my muscles.
Q: So when did you last go swimming?
A: Oh god, I was going to say a long time ago…. I can’t remember now…….Which is a shame, ‘cause I quite like
swimming……But I need to actually start that up, I need to start that back up again, swimming.
Q: Oh I’m really sorry that that’s not happening for you at the moment because that sounds really important, especially
sort of— in the chair obviously, and Saturday and Sundays apart from that what would you hope to do?
A: [Sighs and pauses] Go out more.
Later in the interview she identifies an aspiration…but has internalised a possible limitation
A: I’ll tell you what I want to do, I want to start to look for a job role [laughs], any job, any job that is actually suitable for
me, like I mean doing some voluntary work in a café, or oh, yeah, but that’s a problem, I don’t know whether they’ve got
any wheelchair access [laughs], see that’s a--, that’s a really big issue, whether they’ve got any wheelchair access.
10. A: I think the biggest risk in all of this is that people become invisible.
A: And with… the transition from having residential homes to small individual flats, with domiciliary care
going in and out, people are becoming more isolated….less networked….. the service is becoming sort of
private, very variable in their quality and their ethics. These sort of little privately-run outfits, some of them are
brilliant, some of them are deeply unethical in my opinion…. people just need to be networked, we need to know
about people not have them sitting in a little flat having their services taken away. Because you don’t know
what’s going on, you don’t know what’s happening…..
Q: Do you feel that those who need your services the most are being referred to you? Or do you think there are
A: No, I think we’re missing--…….., I worry about people with learning disabilities who don’t have families or
don’t have outspoken families. When I spoke to a carer a couple of weeks ago she knew of a lad he’d had an
assessment, a needs assessment and it was just the social worker with him, there was nobody else, and he
basically agreed to everything as people quite often do, to make the professional smile and happy and pleased
with them. And that’s his services cut, massively. And I said to this carer where was the advocate, they should
have had an advocate in the room…. [But] well there’s lots of people who--, that happens to and they don’t have
advocates, even though they’re entitled to them. I think if the social worker needs to cut their budget, needs to
cut their spendings, sorry, then what’s the incentive for say a really hard-pushed social worker to call an
advocate to oppose them and to speak up for that person.
(Charlotte, Manager, Advocacy Organization in the South of England)
11. Hope isn’t always a good thing
‘Hope’ in the lives of people with learning disabilities isn’t always a
Hope needs to be realisable hope founded on real (not imaginary care,
support or employment). Real not imaginary communities.
Personalisation and self directed care needs to be supported by
investment in advocacy, otherwise people who are most vulnerable risk
isolation and worse.
12. Well founded hope for some
If you have
Good advocacy, supportive family, range of available opportunities
locally, good networks, well networked family or friends…and you do
not have behaviour which challenges.
13. Misplaced pillars of hope for others
Poor income, weak family support, complex needs, behaviour that
challenges, located in a region with poor provision/offer.
14. Cruel Optimism, Misplaced hopes?
Berlant (2011) develops a related conception of ‘cruel optimism’.
“…optimism is cruel when the object/scene that ignites a sense of
possibility actually makes it impossible to attain the expansive
transformation for which a person or a people risks striving” (P2)
I am on of the research fellows on this research project looking at how people with learning disabilities are building a life, a project entitled ‘self build social care’ because of the current policy context of personalization and self directed support.
It is a 2 year interdisciplinary project – a collaboration between Universities of Southampton and Dundee and partner user-le, learning disabled, advocacy organisations, ( who remain anonymous for the purposes of this research)
Whilst personalisation drew on the principle of promoting the independence and autonomy of disabled people, direct payments policy in the UK has in part been rolled out in light of potential cost savings to social care budgets. Pearson and Ridley rightly ask – is personalization the right policy at the wrong time?
Whilst personalisation contains the potential for empowered lives, The policy and financial context within which we are tasked with researching people with learning disabilities lives, is bleak. Austerity is biting. As this recent review of research claims
We interviewd members and managers of Support organisations that included
Day services (incl. day centre in transition to social enterprise*)
Friendship ‘meet up’ groups*
Voluntary work and training initiatives (e.g. Voluntary work credit scheme)
‘Pop up’ book shop*
Our project was supported by inclusive advisory groups in England and scotland, which have been meeting bi monthly/.
Reseaech methods with leraning disabled participants included
Focus Groups, photo voice, weekly timetables, support circles and timelines were used with learning disabled adults to help consider how people were ‘building a life’, explore learning in this context and hopes and aspirations for the future.
At the sites in south east england I personally researched – a transitioned day centre and a life skills and employment support course
a key thing I needed to communicate as a researcher, was that I wasn’t there to change anything for the individual (either for better or worse)…I was both a figure of concern – ( is this person going to take something away?) and a figure of Hope – perhaps this person can help me do this thing I have been wanting to do?!
So for the sake of this paper I have written these as fictional accounts that I know are true. I now need to go into the data and pull out examples and ideally categorise all of these stories on a spectrum.?
Within them are all sorts of stories of misplaced and ordinary hope (to be just like everyone else, to get a job etc..)
I am now going to run through a series of the themes relating to hope that came up in the research data from the south east case studies, we have only just finished collating the transcripts and so this is very much initial thoughts that I would be interested to hear your own thoughts on….
Earlier in this transcript I ask annie, in her 20s, a wheelchair user, about her hopes for the future or if she wants to change anything about her life and she claims she is happy with how things are, but when I go through a timetable of her week I discover Fridays, saturdays and sundays she descibes herself as ‘just chilling out’. What this means is she is at home, in supported living, watching telly or on facebook. Supported living doesn’t have a lift or communal spaces so if anyone else in the building wants to visit her they have to come to her flat on the ground floor. Apart from her sister, who hasyoung children to care for, her family no longer live in southampton so she doesn’t have regular visitors or much family support.
Later in the interview she identifies an aspiration…but has internalised a limitation
……A: I’ll tell you what I want to do, I want to start to look for a job role [laughs], any job, any job that is actually suitable for me, like I mean doing some voluntary work in a café, or oh, yeah, but that’s a problem, I don’t know whether they’ve got any wheelchair access [laughs], see that’s a--, that’s a really big issue, whether they’ve got any wheelchair access.
The Mencap employment and lifeskills support course that Annie was on was a 12 week course running on wednesdays. The idea was to find people placements in local shops and volunteer work, however when I interviewed participants in the penultimate week of the course only 1 of them new what they were going to be doing on a Wednesday once the course had fiished. People like Annie had not found a placement.
Meanwhile for those who had already found work, the work was fragile and unsustainable. A community café was taking people iand had become a source of hope for some, with one person gaining paid employment through the café - but during the lifetime of this research that café closed. A source of hope and occupation for botht he team at the council and for people I interviewed was unsustainable ( little business advice, financial pressures,)
That is not to say that personalization and the hopeful policy context is all a bad thing….
We reviewed what was availble in each of the study areas, In broad terms we found that there was a patchwork of opportunities for people with learning disabilities and the increasing shift to personalization has meant that they have to capitalize themselves on what was available in their area. In some cases this was not well suited to their particular needs or age group but they were choosing to do something where possible rather than be stuck at home.
Anecdotally I would say middle class parents, friends or supporters use their social, economic and cultural capitall to maximise allocation of resources.
This reinforces social and economic inequalities. And from a scan of the literature but please correct me there seems to be an underexaminied class component to studies of the recent impact of personalization and self directed support on learning disabled people’s experiences
Some areas were much better resourced than others – often free, or low cost provision of activities or work opportunities was reliant on a handful motivated individuals.. Se critiques of Camerons ‘Big Society’ vision and the imagined communities of caring supportive volunteersit rests on and the post code lottery it generates…
What does good self build social care look like?
in built sustainability
well networked individuals
sense of permenance/ ongoing ness (build competence and attracts realistic hopes)
peer support ( going out together into the community with other people with learning disabilities)
practitioners and care workers and org leaders operating with a set of moral principles? ( an ethos?) with empathy or identification ?
transformative – challenging local authorities.
from necessity good things emerge ( but how much learning and advocacy need to be factored in>) the right amount….
Commissioners aware of it’s boundaries and limitations ( not a panacea)
Continuity, sense of progression, built in learning opportunities
Everyone has a sense of this being something that has longevity
Recognition of regional diversity, diversity of aspiration
Consciousness raising, aware of peers anda ware of organization and its role.
Realizes individual and collective aspirations
Also legitimates peripheral participation.
(needs an info graphic? FROM Working Class, poor income, weak family support, complex needs, behaviour that challenges, located in region with poor provision/offer,
You are much less likely to benefit from personalisation…
Example from Kinship café? Unsustainable?
Hope sits in relation to the possibility and likelihood of certain events. However, hope isn’t always rational. When we hope we can cling to a mere possibility – thus one can hope for outcomes that in reality are very unlikely. Hope in this instance is more akin to Berlant’s (2011) ‘ Cruel Optimism’. WE also saw – as in annies case the absence of hope, or a feeling of control over one’s future / just chilling out’ seemed to signal a degree of apathy and resignation…