#7days of action – Why History

by Jan Walmsley

I felt like a murderess. I really felt I had condemned him to death. And that was when I threw myself into Mencap heart and soul. I thought I must fight for all those who are in the community because perhaps parents won’t have to undergo this trauma in the future if we can improve services in the community. I won’t give up until I die.

(Rolph et. al., 2005)

This was Rene Harris, a founder of Luton Mencap Society, speaking to me about her decision to put her adolescent son, Colin, into Bromham mental handicap hospital in 1954.

There are uncanny echoes of Rene’s words in this blog, written by Paula Rawnsley for #7daysofaction in 2016:

I asked for help. How I wish that I never had asked for help now. How I wish darling Thomas I had kept you by my side and never let you go … I’ll never forgive myself. I can’t live with the knowledge that I left him there in their hands. (https://theatuscandal.wordpress.com)

Unlike Rene’s son, Colin, Thomas did die. His case will be the subject of an inquest. And like Rene, though using different media – Twitter and Facebook rather than fetes and coffee mornings – Paula is campaigning in #7daysofaction so that others do not have to undergo the trauma.

The parallels are striking. An adolescent boy, a family asking for help to manage him as he struggles to come to terms with growing up. And the response, at a distance of 60 years, is to put the young man away, cut him off from family and all that is familiar.

In this blog I explore those parallels, and ask whether there is hope.

The week beginning 18th April 2016 was designated a week to really push home the message that 3000 citizens are detained in Assessment and Treatment Units across England; and that this must end. It’s a campaign spearheaded by families, like Paula Rawnsley, whose relatives are (or were) in these Units. Each day a new harrowing story of an individual who, because of the absence of support and understanding for them and their families at key points in their lives – often adolescence – found themselves taken away from all that was familiar, and placed in a sterile environment, frequently miles from their homes, where relatives need permission to visit.

How can this be? In 2010 I, along with many others, celebrated the final closure of Orchard View, the ‘last learning disability hospital to close’. Despite the shortcomings of ‘care in the community’, it was an important landmark. Yet, even then, I knew this was not the end of institutions. It was just that it was the last NHS hospital to close. Except it wasn’t, because as hospitals closed Trusts were busily building units on the campus to house the people they could not be bothered to support elsewhere. One of these I visited, on the site of St Ebbas Hospital Surrey. It housed people who, in their frustration tore down curtains, damaged furniture, behind closed doors and high wire fences. The TV was high on the wall. There were no carpets, just bare floors and equally bare furniture. As researchers we were not welcomed. And then there is Calderstones, housing over 200 people. Its closure has recently been announced a decade after its first closure. How many closures can any hospital need?

It is families who are leading #7daysofaction. Families have long been the driving force to close institutions. It was Judy Fryd who, in 1946, took the first step of a movement which continues to this day. She published an appeal in Nursery World to hear from other parents in her situation, alone at home with their ‘mentally deficient’ child. She started a ball rolling which eventually created the organisation we know as Mencap. Rene Harris, whom I quoted above, was inspired by Judy Fryd. Mark Neary is the spearhead of #7daysofaction. His son spent a year in an ATU, following a short spell in respite when his dad needed to go into hospital. His Local Authority, reacting not to Steven’s distress at being plucked from everything he knew and made him feel safe, but to some higher order imperative, announced that Steven needed secure accommodation. And Mark had a devil of a job to get him back.

Each heart rending story is different. But there are obvious trigger points. Frequently, as young people with autism and complex needs get into their teens, not only do they struggle with the changes associated with adolescence, they also begin to face the truth that their lives will not be like those of their siblings. They will not leave school get a job, go away to Uni or College, they are unlikely to get a girl or boyfriend, their lives will probably be sheltered and limited. There is a reaction, a change in behaviour, often violence or depression. The family asks for help. No help is forthcoming. Other than the offer of a place in an institution. In the 1950s the advice given to Rene Harris, and many others, was ‘put him away and forget about him’. Now it is more subtle – ‘assessment’, ‘treatment’; beguiling terms which give hope to embattled families. But the result is the same. The young person is removed, often triggering a further round of ‘challenging behaviour’, which is not understood as a response to traumatic separation, but is seen as a further justification to keep the person detained. And the family is left, regretting their decision to comply, but now the situation has gone beyond their control.

A further parallel with earlier parent struggles is the determination of the authorities to deny families access to relatives. In the days of the long stay hospitals this was done by placing people in distant – often rural – sites, with poor public transport. Visiting times were limited to half a day once a month. Families were prevented from seeing the wards. Mail was censored. Home leave was often denied even at Christmas.

Has much changed since? Not much as far as the stories in #7daysofaction are concerned. Almost half of the people detained in inpatient services are more than 50 km from their homes. Families face long journeys. Their access to their relatives is restricted. Home leave is often denied:

Just before Christmas 2015, Nina Ni, went to visit her son, Tizane, in the ATU he is currently being detained in. Tizane had been unsettled for days. He had repeatedly asked to spend some time at home over Christmas but this had been refused by the Responsible Clinician. (https://theatuscandal.wordpress.com)

In the past, the belief that learning disability was inherited gave professionals confidence in denying families access. Now the argument is that as adults people have the right to choose whether to see their families – and all too often, as Sara Ryan’s painfully documented account of her son’s detention and death in the Slade Unit in Oxford shows, professionals choose to believe that the choice is not to see them. The result is the same. Families kept at arm’s length, sometimes with disastrous results, as in Connor Sparrowhawk’s case.

There are differences too. To our shame, little is known about death rates in the past, but some sampling suggests they were high. Undoubtedly many people died prematurely in institutions, from accidents and, pre antibiotics, from infectious disease. Too many young people, like Thomas Rawnsley and Connor Sparrowhawk have died whilst detained in modern institutions. Without their families’ ferocious campaigning these deaths might have been swept under the carpet. But, thanks to social media and those same families, we know about them. The closed doors are not quite as closed as they were.

Is there hope? I think so. Families coming together in campaigns such as #7daysofaction is probably the most significant development in learning disability for decades, since Mencap lost its way, back in the 90s. These families are leading a loose but powerful alliance of people, to put continuous pressure on a resistant and complex system, to hold the NHSE Transforming Care Team to account for their actions. And to use the appeal to our common humanity to garner wider support, from press, media and the public. What next? We can’t let up. Media attention is brief unless fed with new stories. We can all help to keep the media beast fed, to keep those 3000 detainees in the public eye, until they are brought home, and those Units closed.

References

Sheena Rolph, Dorothy Atkinson, Melanie Nind and John Welshman (eds) (2005) Witnesses to Change: families, learning difficulties and history, Kidderminster, BILD.

Why history?

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.

References

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