Week 9: Art and activism #107days

We start with an apology that Week 9 is having its first blog on a Friday! An all time delayed performance, even for us, however that’s partly because we’ve been out on the campaign trail this week and doing ‘art and activism’ rather than writing about it! Before you delve in to this post we’d like to remind you that Live at LICA have their Family and Community Day tomorrow (Sat 23 May) so pop along to see the #JusticeforLB artwork, join the pop-up picnic and survey the quilt in all it’s majesty. For now, Sara has blogged about the brilliance that was Monday:

On Monday, as many of you will know, the Sparrowhawk Art exhibition took place at the Peter Scott Gallery, Lancaster University as part of their Open 2015 event. Parcels of #JusticeforLB art were sent up north over the past few weeks to create both an exhibition and a political space. Richard Smith, the gallery curator, described what underpins Open 2015;

‘We feel an art centre should be communal and tell us who we are and who we want to be; if not a social movement, it should at least provide a deeper awareness and sense of place. It should have a design that can situate all disciplines together in the search for knowledge and understanding and have at its core the unique process and language of art, which is able to articulate things that cannot be expressed otherwise. During OPEN 2015 we’ll start this journey, exploring what an art centre could be and what it should do’

Sparrowhawk Art was clearly in the right space.

One thing I particularly loved was the way in which the exhibition was created during the exhibition. It started at 10am and we pitched up everything was pretty much on the floor or in boxes (other than the quilt that was being displayed for the month). We became gallery helpers, sticking up the remarkable pictures of the Justice flag at Glastonbury, guillotining a copy of Jeremy Hunt’s letter, thinking of ways of displaying the Justice cardboard (but deftly reinforced) bus and, for Janet Read, doing some on the spot stitching repairs to the quilt.

It was amazing.

Late morning there was wondrous excitement as the Guardian online gallery was shared. So moving, so stunning, so remarkable that the artwork has been created spontaneously and created with love and care.

This also stood out among the gallery team. They were accommodating, sensitive and handled every item with respect. Later, during the panel, Chris Hatton reflected on how unusual this was to witness. Learning disabled people are not typically afforded such respect.

The panel

At 3pm, the panel convened, chaired by Chris Hatton and consisting of Graham Shellard (My Life My Choice), George Julian (#JusticeforLB), Janet Read (Chief Quilter), Dominic Slowie (NHS England) and Imogen Tyler (University of Lancaster).

Dominic (via a video link) described how “the pain, anger and frustration has been reborn into something that’s captured the minds and hearts of people” and how the campaign has grasped practical projects that can make a difference. George emphasised how the campaign is about everyone and how it’s demonstrated that people do care. Graham said that My Life My Choice “knew what it was like to be someone with a learning disability and have something happen to you”. He talked about some of the activities he’s involved in and announced that LB had been made an honorary DJ at Sting Radio. Janet described the campaign as a choir without constraint; people lending an ear and pitching in together. “A talented, unconditioned choir of excellence!” She described how the quilt not only records the terrible things that happened to LB but also his life and his personality. Finally, Imogen talked movingly and powerfully about her cousin Rachel who loved cherry coke and cheesy wotsits. She ended by talking about an event at Inclusion Scotland where George Lamb announced “We are the revolting subjects and we are here to revolt”.

The discussion involved powerful stories from ‘just two mums’ as the founders of Unique Kidz and Co described themselves, as well as reflections about the role of social work.

It was powerful, moving, emotional and pretty humbling (not sure of the right word here) to listen to this, surrounded by LB’s artwork. I think Imogen summed it up perfectly.

Screen Shot 2015-05-22 at 09.24.41

Thank you to Chris Hatton for organising so seamlessly, and to LICA for hosting with generosity and welcome.

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Week 6: Ecoutez et repetez #107days

Continuing our week exploring inquiries, today’s post comes from Chris Hatton

When I was a PhD student, the common room in the research centre where I ‘worked’ (yes, there were such things in the olden days) contained an unremarked upon filing cabinet. One idle afternoon (yes, there were such things in the olden days), out of curiosity, I opened it, to find an anti-Narnia of dusty inquiry reports. The rest of the afternoon went as I started reading through them, my shiny, unthinking bubble of an optimistic perpetual present (what history?) gradually deflating and then popping altogether. I consoled myself that this was all in the sepia-toned, bad, institutional past, though, and people with learning disabilities were on the path to a bright and better future (cue heroic socialist realist poster). As a metaphor for the history of inquiries, it’s so perfect as to be completely unconvincing.

Some quotes (and for more from recent inspections of ‘specialist’ services for people with learning disabilities see here):

  1. ‘Our investigation found that institutional abuse was widespread, preventing people from exercising their rights to independence, choice and inclusion. One person spent 16 hours a day tied to their bed or wheelchair, for what staff wrongly believed was for that person’s own protection. One man told investigators that he had never chosen any of the places he had lived as an adult’ Full report
  2. ‘The families of patients at Winterbourne View Hospital had no experience of being regarded as partners, deserving of trust and respect, or even of collaborating with Winterbourne View Hospital staff. Theirexpertise, borne of the lengths to which they had gone to keep their relatives at home and in care services, was not acknowledged by Winterbourne View Hospital. They were excluded from having a full picture of events at the hospital’ Full report
  3. ‘An unduly casual attitude towards sudden death [and] inadequate systems for reporting incidents’ Full report
  4. ‘1991: Allegations of assault. Investigations were made and evidence established, but the Inspector chose not to use the enforcement powers of the Act.
    December 1992 – April 1993: Allegations of multiple abuse. The evidence of abuse increased and the Inspectors accepted that there was a serious case to be answered. But no assessment of the risk to residents was undertaken nor were the police called in to help. Fearing intimidation of staff and residents, the Inspection Unit continued to rely on announced inspection visits.
    1993: Joint Police/Inspection Unit Investigation. There was no common understanding of the strategy to be followed. The Inspection Unit decided to take no action unless and until the Police decided not to prosecute. They failed to assess the evidence as it became available and so suspended their duty to consider whether enforcement action was needed.
    1994: The Inspection Unit Investigation. This was an extremely complex investigation for which the Inspectors had little experience. They did not seek help from the Health Authority, renew contact with the Police or use other specialist sources. Complaints about specific aspects of the care regime were never properly investigated. Social workers, families and the police were given no information about specific allegations.
    1994: Action on the Inspection Unit’s Report. The advice to Social Services Casework Sub-Committee not to take enforcement action under the Registered Homes Act 1984 to cancel the registrations in respect of the homes, as summarised in the final report which was put to the Social Services Sub-committee, did not reflect the professional judgement of the Inspection Unit’ Full report
  5. ‘For long periods of time the hospital buildings were neglected and dangerous. They were a patchwork quilt of makeshift repair and poor workmanship. The roof of the main building let in water for many years and the upper floor often had to be evacuated because rainwater poured in and it was feared that the ceiling would collapse. Patients were sometimes soaked as they slept. Buckets and tin baths littered the upper corridor…The standards of hygiene were often appalling and patients and staff alike suffered from demarcation disputes between nursing and domestic staff. Faeces and urine were frequently left unattended for days on end, with consequent risk to health and welfare of patients and staff’ Full report
  6. ‘Some individuals, as the trust has acknowledged, have suffered abuse including physical, emotional and environmental abuse. The trust’s own investigations at Budock Hospital have shown that some people using its services have had to endure years of abusive practices and some have suffered real injury as a result. For example, one person suffered multiple injuries over time, including a fractured skull after being hit by another person who used the trust’s services. Despite the development of numerous action plans, underlying problems have never been addressed and poor practice has become ingrained within the management of learning disability services and the provision of care’ Full report
  7. ‘There were examples of individual patients in Winterbourne View Hospital and their families being threatened with the improper use of mental health legislation’ Full report
  8. ‘All the male wards are seriously overcrowded. The buildings are old and ill-designed. The standards of amenity fall far short of what would nowadays be expected…The staff establishment [of one ward] is half the minimum desirable…’ Full report
  9. ‘The standard of nursing care was generally extremely low and the quality of life of many of the patients suffered accordingly. Shortage of staff at different levels was at various times a contributory factor, but it was by no means the principal cause of difficulty’ Full report

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A few observations from me. First, as the #JusticeforLB #107days inquiry timeline and Katherine Runswick-Cole’s post make clear, these successive inquiries, serious case reviews, independent investigations and inspections (46 years on from Ely Hospital now, almost as old as me!) have not resulted in the eradication of abuse of people with learning disabilities in ‘care’ services.

Second, these inquiries are clear-sighted about identifying the ‘causes’ of the abuse and poor practice reported time and again, but they generally do not try to get to what Sir Michael Marmot in a public health context calls ‘the causes of the causes’. We know that smoking causes lung cancer, but wouldn’t it be equally important to know why people take up smoking in the first place? These inquiries tell us what seemed to contribute towards abusive practices in each place, but not to address what causes these factors to recur, again and again.

The Utopia of Rules by David Graeber (see a long post on my reading of this here for a detailed expansion of the argument) struck me forcibly as providing part of an answer to this question. One of his central points is that bureaucracies can draw on (and indeed rely on) the threat of real violence for their enforcement. So, is the abuse reported in inquiry after inquiry a logical end-point, or a necessary element, of an intensely inhuman, bureaucratic ‘care’ system?

Is it also possible that the ‘failure’ of inquiries to eliminate abusive practices (and not just in services for people with learning disabilities, as this slideset from Prof Kieran Walshe makes clear) is partly because the recommendations they make are all about tinkering with these inhuman bureaucratic systems rather than seeing them as part of the problem and tackling them head on?

So, where might we go from here? Whenever I see a service really working for a person with learning disabilities, there’s always a person with a strong, human commitment to making whatever they’re doing work better for people, no matter what bureaucratic system they’re enmeshed within. Some people just seem to ‘get it’, and have the energy to bend/break bureaucratic systems to create a bubble of humanity within these systems. Why doesn’t this happen everywhere? I used to think part of the issue of ‘scaling up’ good practice was to design systems better so that good practices in a place could survive the committed person moving on. I now realise this was completely wrong-headed and bureaucratic as a way of thinking. Now I think what we need is to find, nurture and support as many ‘humans’ as we can to start to shake and dissolve the inhumanity of bureaucratic systems. A service needs to start without the bureaucratic threat of violence in its back pocket, for genuine, human relationships of trust to develop.

Sources
1, 6: Joint investigation into the provision of services for people with learning disabilities at Cornwall Partnership NHS Trust, 2006
2, 7: Winterbourne View Serious Case Review, 2012
3, 8: Ely Hospital Inquiry, 1969
4: Independent Longcare Inquiry, 1998
5, 9: Normansfield Hospital Inquiry, 1978

Day 49: An academic point? #107days

Day 49 was adopted by the Centre for Disability Research (CeDR) at Lancaster University. Hannah Morgan and Chris Hatton, two of our greatest supporters since #JusticeforLB evolved, organised and presented two events, a lecture on Institutional Abuse for first year students on the Contemporary Social Problems module and a seminar by Chris, Laughing Boy versus the Zombie Institution: Closing the new institutions for people with learning disabilities. They live tweeted the seminar and have compiled a storify about the day here.

When asked why they are supporting #107days and #JusticeforLB, Hannah had this to say:

GeorgeFoxBdg

I’ve known Sara from the disability studies circuit going back to the first Disability Studies conference we hosted here at Lancaster in 2003 and always held in the George Fox building in the picture. Since then we’ve met up at different conferences and events and always at the Lancaster Conference.  One of the things I really value about disability studies is the sense of community that has developed and the pleasure taken from watching people’s work evolve and develop over time. Sara came to the first conference as a phd student presenting ‘I’m sorry, she’s special needs”: explaining learning disabilities in public encounters. As her blog readers will know she has a particular gift for a snappy title and for writing that is engaging, rigorous and thoughtfully. I started following her blog soon after it started often laughed at the early LB tales and sharing her frustration at how little was offered and how little value attached to the dudes in our life.

I saw Sara last year at the Nordic Network on Disability Research (NNDR) Conference in Finland where Sara presented her paper in tweet length sentences. Her mastery of social media was apparent. Catching up outside sessions – in May last year – it was clear things weren’t going well for LB and that the unit was operating in a way that devalued her and their families’ contribution to LBs life. Little did we know then what was to follow.

Screenshot 2014-05-07 21.33.45 Justice for LB seminar 7 May 2014

In his presentation today Chris Hatton talked about the sparkly spiral of shame where us academics merit fourth place after providers, commissioners and regulators. He highlighted the way in which our lives remain as disconnected from the realities of many people with learning disabilities lives and that we (as a group) are just as craven in the face of (illusory?) access to influence and funding. This is true, all academics working in disability studies or elsewhere with disabled people do need frequent cold hard looks in the mirror. We need to remember why we do what we do. For me, and for many of my colleagues – LB Buses postcards have provoked lots of conversations and many offices in the department are resplendent with a buses or colours postcard. It is what – in the words of another disability studies colleagues – ‘keeps us right’.