It’s over 21 years since the Social History of Learning Disability Research Group first formed and we think it is time to ask; why history? This blog is intended to kick off our call for papers for the 2016 Conference, which has that theme.
It’s been troubling us of late that we spend time researching, writing and thinking about the past, when things in the present are so dire for many people with learning disabilities. The totally unnecessary death of 18 year old Connor Sparrowhawk, and the determined campaign for justice led by his family, has highlighted just how bad. Is it time to forget the past and focus on fighting the battles of the present?
And yet, there is still a case for studying the past. With some caveats. The messages and stories need to be heard. The history of learning disabilities needs to be participatory, and polyphonic, drawing on many voices. And, in the situation we find ourselves at present, it needs to be interpreted, shared and fed into current policy and practice. As we watch the shrinking of the disability category, the tightening of eligibility criteria for services and the punitive sanctions applied to people on welfare, it is helpful to remember that this is a classic state response. And to consider what past strategies were successful in changing policy direction.
A very important justification for history is that many people with learning disabilities want to tell their stories, to be known and remembered, to teach some important lessons. Likewise, younger generations of people with learning disabilities want to know about the past, and to reflect on the experiences of people with learning disabilities in previous decades and centuries. In November 2015 we launched Mabel Cooper’s life story on film, No Longer Shut Up. Mabel wanted to see all people with learning disabilities, including people with the most complex disabilities, included in their local communities. She used her own life story to teach people about institutions, and why we shouldn’t have them. This was a message she targeted particularly to children in schools. She believed that her story could shift attitudes, and that attitudes are what really need to change if true citizenship is to be achieved for people with learning disabilities. The film will help carry on that work after her death.
Historian Frisch once made the point that oral history was both more history, telling us more about events in the past, but also anti-history, a way of putting another perspective, often that of the underdog. This is classically illustrated by Mabel’s story. We’ve seen, indeed have fostered through the SHLD, a great burgeoning of anti-history as far as the old institutions are concerned. Many people who lived in them have told their stories, shared them, and changed for ever the perception, prevalent in so many institutional histories, that these were essentially benign places of asylum. No Going Back was the title of a book written by former residents of Prudhoe Hospital, Northumberland. We can and must use the experiences of former residents to resist the forces that are pushing us towards recreating large segregated settings. We know, from studying people’s histories, that for most people, most of the time, this is the wrong way of delivering care.
But, you may say, large institutions are largely a thing of the past, and we know about them already. What is left to say?
Accounts from people with learning disabilities and families on the receiving end of community services also have lessons for the present. In Witnesses to Change, published by the SHLD group in 2005, we gathered stories from families since the late 1940s. These stories show graphically how their experience of services are often at variance with ‘official’ service descriptions or policy accounts. These accounts cannot be obtained from other sources and enable a more nuanced understanding of how policy and local practice impacts on people’s lives. These stories afford insight into what worked on the ground and what didn’t. Critically the stories in Witnesses to Change highlight the roles played by individuals working in services or voluntary organisations willing to go the extra mile to provide support when things were difficult; and the importance of long standing relationships, which meant local staff knew the families they were working with, and could provide the sort of help they really needed, particularly at times of crisis.
Partly because of the dark era of institutions, the history of learning disability has been dogged by what is known as a Whiggish tendency, to view the story as one of darkness in the past to present day light. Despite some of the dreadful things that blight the present, like Winterbourne View, or the premature deaths revealed by CIPOLD (Heslop et al, 2013), or the failure to investigate unexpected deaths of several hundred people in the care of Southern Health Foundation NHS Trust, as if they don’t matter, there is still a tendency to dismiss the past as a dark unenlightened era, compared to where we are now. This has been encouraged by history as advocacy. Those voices from the institutions, telling us how awful they were, stand in the way of a more sober reflection on the past.
A couple of thoughts here. The first is that institutions were the invention of the late nineteenth century, a time when people with learning disabilities (then called idiots, imbeciles or ‘feeble minded’) were often neglected. They lived with their families, many too poor to spend time caring for them, some were homeless, or housed in lunatic asylums or poor law institutions. Alongside the eugenic rhetoric, there was a benevolent impulse behind setting up specialist facilities. As so often, parsimony and lack of imagination killed off the positives, just as seems to be happening with Direct Payments and Self Directed Support today. It appears that Mabel was correct. Without changing attitudes to people with learning disabilities, to regard them as fellow humans, any policy is doomed to fail.
The second is that there is more to learn from studying institutions. Jan Walmsley, working with Northamptonshire NHS Foundation Trust’s Finding Out Group, has just published an account of Princess Marina Hospital, Northampton, through the reminiscences of staff who worked there. Many of those staff had trained and worked elsewhere, in much larger and older institutions. The consistent message is that this was altogether a better hospital, with less overcrowding, better staffing ratios, and more individualised care. This echoes a now largely forgotten study, Put Away (1969), written by Pauline Morris in the aftermath of the Ely scandal. She studied two hospitals in depth. Both were bad, but one was much less bad than the other. If we can stop ourselves using history to make blanket condemnations of the past, there might be things we can learn to apply to the all too fraught management of our current social care settings.
Some present difficulties started with Valuing People (DH 2001), that beacon of progressive ideas. The trouble with Valuing People was that, despite the much trumpeted ‘co-production’, it was little more than its ideas. It is instructive to compare it with its predecessor, Better Services for the Mentally Handicapped, 1971. Better Services was not ‘co-produced’, far from it, but it was based on some careful fact finding, how many people, what degree of impairment, what facilities might be needed by when, and where, if institutions were to be run down in favour of community services. These were commitments that could be used to hold Governments to account. Better Services laid the foundation for Local Authorities to build hostels and day centres in virtually every part of the country. By contrast, Valuing People had very few statistics and made very few commitments. It has been criticised by families and advocates of people with higher support needs, on the grounds that they were simply not there. How convenient for Governments now to use those grand ideas of Valuing People as an excuse to reduce support and encourage people to get jobs, to use mainstream services. As a very eminent academic once commented, you need to be very scared when Government takes up your best ideas and runs away with them. That was indeed prophetic. Isn’t it important to look back at how our predecessors thought about and managed the challenge of caring for or supporting people with learning disabilities? We might not like the language or assumptions they betray, nevertheless we may learn something of value.
Ironically, academics may poke themselves with doubts, but history certainly matters a lot to organisations. We at the SHLD have been commissioned to help large organisations tell their histories to mark important anniversaries. These organisations do not want the pure unvarnished truth to be told. They want to use the telling of their histories to carry a positive message about themselves today, how progressive and enlightened they are. History as advocacy, again.
So, we think there is a strong case to continue to look beyond the all too easy condemnations of outdated language and attitudes, to be thoughtful about the past, to collect the perspectives and experiences of the many people affected by learning disabilities, and to use these voices to critique the very worrying developments we see unfolding, to suggest other ways. And we must listen to people with learning disabilities and what meanings history holds for them. At the launch of Mabel Cooper’s film, one young man commented that while the physical walls of the institution may have come down, those walls exist in new and different ways for him today. The past speaks to the present, and vice versa. We need to engage with those messages, and continue to the challenge the casual assumption that things are so much better now.
Cooper, M. (2015) No Longer Shut Up (film) available on https://www.youtube.com/watch?v=BZAgOs4Ngn4
Department of Health (2001) Valuing People London: The Stationery Office
DHSS (1971) Better Services for the Mentally Handicapped Cmnd. 4683 London: Her Majesty’s Stationery Office
Heslop P., Blair, P., Fleming, P., Hoghton, M., Marriott, A. and Russ, L. (2013) Confidential Inquiry into the premature deaths of people with learning disabilities, Bristol: Norah Fry Research Centre
Keilty, T. and Woodley, K. (2013) No Going Back Sheffield: Centre for Welfare Reform
Morris, P. (1969) Put Away London: Routledge Kegan Paul
Rolph, S., Atkinson, D., Nind, M. and Welshman, J. (Eds) (2005) Witnesses to Change: Families, Learning Difficulties and History Kidderminster: BILD
Walmsley, J. with Northamptonshire NHS Foundation Trust Finding Out Group (2016) A Modern Hospital available on http://www.centreforwelfarereform.org/library/authors/jan-walmsley/a-modern-hospital.html