Launch of Learning Disability England, June 14th 2016

by Jan Walmsley

It was an exceptionally showery June day in London when Learning Disability England was launched in the House of Lords. And what a tremendous event it was. Chaired by the inimitable Gary Bourlet, and attended by a fantastic number of self advocates (and others) from across the country. The message – we – self advocates, families and service providers – are stronger together. And boy, do we need that voice now. Gary Bourlet puts it well here http://peoplefirstengland.org.uk/gary-bourlet/were-launching-learning-disability-england/

Our host was Baroness Sheila Hollins, and she was joined on the platform by another redoubtable House of Lords campaigner, Jane Campbell. Jane’s speech was especially memorable, on an exceptionally memorable day. I liked ‘We are not vulnerable, we just find ourselves in vulnerable situations’. And, momentously, she acknowledged something people associated with self advocacy have been saying and thinking for many years, that the early disabled people’s movement, of which she was a leading light, failed to acknowledge the voice and different experiences of people with learning disabilities. She promised this will change.

A minute’s silence for all those who have died in Assessment and Treatment Units was incredibly moving. And, personally, I was delighted that my dear old friend Jackie Downer was one of a number of self advocates who were awarded lifetime membership of LDE.

As ever, I was prompted to thnk about the historical context. A united voice for people with learning disabilities in England (unlike Scotland and Wales which both have national People Firsts) has been a very long time coming – and, although I hope to be proved wrong, I am not sure it is here yet. I remembered a conference back in 1994 which sought to set up a national People First in England. Held in an anonymous hotel in Daventry, of all places, one man and one woman from every town or county was invited. Many places responded. Some delegates had never been out of their home towns before, let alone to a national conference, whilst others, like Lloyd Page, Nigel Lott and Ian Davies were experienced campaigners. Another amazing time observing self advocacy at work, one of so many I’ve been privileged to experience in my life. It was a harmonious occasion, and was crowned with a visit from John Bowis, then a minister (in a Tory Government) who offered £50,000 (as I recall) to set up a national organisation. Hard to believe it, but I saw and heard this. Unfortunately, there was one large and well established self advocacy organisation who refused to play ball. And the initiative foundered. Until today, that was as near as we have come to a united voice for self advocacy in England.

But there were significant absences yesterday too. Mencap, the self proclaimed ‘Voice’ of learning disability, was not represented. And I saw few National Forum members, although leading members of the National Valuing Families Forum were there. Is this ominous? I really hope not. As I said, this united voice really is needed, and it is to the credit of all involved that it has got this far, with many well wishers. If you agree with me then do join. LDE will need all our help and support as it seeks to establish itself. I really wish us luck.

Life stories in East Kent

by Jan Walmsley

More than 20 people with learning disabilities and their supporters came to learn about recording their life stories at Canterbury Christ Church University’s Broadstairs Campus on a wonderfully sunny day in March. The workshop was led by Jan Walmsley and Sue Ledger, members of the Open University’s Social History of Learning Disabilities Research Group.

People came from all over East Kent, from Folkestone to Canterbury, Dover to Margate. On arrival, everyone looked at examples of life stories by people with learning disabilities, going back as far as Joey Deacon’s back in the 1970s. And met Joyce Marsh, who, with the help of Mencap volunteer Linda Smith, actually published her life story in 2015. It was inspiring to everyone to meet someone who had actually done it.

We then viewed a film, No Longer Shut Up, which tells the life story of the late Mabel Cooper. Mabel was taken into Children’s Homes, and later into a huge institution in Surrey called St Lawrence’s. After she left St Lawrence’s she campaigned for the rights of people with learning disabilities, and told her life story wherever she could so that people are ‘No Longer Shut Up’. No one in the audience had lived in a long stay hospital, thankfully, but most people could relate to Mabel’s story – being moved around, being bullied, not having a say in your life, these experiences were shared by many of the people who came.

We then got around to discussing how many people wanted to tell their stories. Everyone did. Lots of people shared bits of their lives to explain why it was important that their stories are recorded.

After an excellent lunch we thought about the practicalities, how people actually tell their stories. Joyce and Linda explained that they had had lots of conversations which Linda had written down. That is how they made their book. We watched videos of interviews, and thought about what makes a good interview. Everyone then practised asking and responding to questions. Some people were quite brilliant at doing this.

We talked about ethics – making sure people know what they are agreeing to; rules about using photos which show people; and thinking about other people whose stories are part of our own lives. Do they have a say in what people record?

Finally, we got around to discussing what to do next. Make a book of people’s lives like Joyce Marsh? Other people liked the idea of making a film about the lives of people with learning disabilities in East Kent. Everyone agreed that these life stories need to be on a website and that professionals need to know about people’s past, as well as their present, and to learn what makes for a good life – and how they can help.

East Kent Mencap, East Kent NHS Hospitals Trust and Canterbury Christ Church University, who sponsored the workshop, are now discussing how to raise money to make the dream of recording the lives of people with learning disabilities in East Kent a reality.

a picture of someone holding up an A3 piece of paper on which are written ideas for a film

Ideas for a film about the lives of people with disabilities in East Kent

#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.

PHE Conference – using primary care data to plan better services for people with learning disabilities

By Lorna Rouse

On the 15th March Public Health England held a conference on using primary care data to plan better services for people with learning disabilities. Having identified GP registers as a potential source of key information on the health of people with learning disabilities, the Learning Disability Health Observatory at Public Health England have been working with the NHS Information Centre to extract anonymised data from general practice records to explore the health profiles of people with learning disabilities in local areas. The conference introduced this data, presented some preliminary findings and considered how this new data might be used to improve experiences of health and wellbeing for people with learning disabilities. (Further details can be found at https://www.phe-events.org.uk/HPA/media/uploaded/EVHPA/event_553/PHE_Learning_Disabilities_Conference_2016_slides.pdf)

Setting the scene

Professor Eric Emerson (University of Sydney and Centre for Disability Research, Lancaster University) put the new data in context with a brief history of some key events that have highlighted the inequalities in healthcare experienced by people with learning disabilities and some resultant initiatives aimed at improving this situation. Despite signs of progress, better understanding is needed of how and why the health and health care of people vary between different parts of England.

The new data

Gyles Glover (Co-Director of the Learning Disability Observatory, Public Health England) introduced the new data with some words of caution. In particular, that the data tells us what has been recorded in practice notes and there are likely to be inaccuracies and peculiarities in the ways that individual practices record some conditions for patients with learning disabilities. Additionally, the data do not cover all practices since some did not respond and one maker of licensed information systems asked an ‘unrealistic’ fee for their cooperation, so practices using this system (including some known to have high rates of patients with learning disabilities) could not be included.

A comparison was presented of records for people with and without learning disabilities for a range of conditions, concluding that many major health conditions are more commonly reported or reported at younger ages for people with learning disabilities.

The case of diabetes

Since my PhD project explores the experience of diabetes care appointments for people with learning disabilities, I was keen to hear about the data on diabetes. In agreement with the limited existing research (e.g. Anwar, Walker, & Frier, 1998; Shireman, Reichard, Nazir, Backes, & Greiner, 2010; Taggart, Coates, & Truesdale-Kennedy, 2012), these new data show higher frequency of reported diabetes in patients with learning disabilities (and at younger ages) than in patients without learning disabilities. Diagnosis frequency of both type 1[1] and non-type 1 diabetes[2] was almost double for people with learning disabilities. In an average 250k population there are:

  • 8.6 people with learning disabilities and type 1 diabetes
  • 81.6 people with learning disabilities and non-type 1 diabetes
  • 1.9 times the frequency of diabetes in people without learning disabilities (Glover, 2016).

Encouragingly, and in contrast to some existing literature, which suggests inequalities in diabetes care (Taggart et al., 2012), the new data indicated similar management of diabetes for people with and without learning disabilities. This is based on records of a commonly used quality indicator for diabetes management, the testing of HbA1c levels[3].

  • 87.4 people with learning disabilities and 91.3% of people without learning disabilities had a recorded up-to-date HbA1c test
  • 81.9% of people with learning disabilities and 85.7% of people without learning disabilities were recorded as having a ‘satisfactory’ HbA1c level (Glover, 2016).

I will be interested to see whether further details of quality of care indicators for diabetes become available from this data.

Improving healthcare – Looking After Me and My Diabetes

During my literature review I have been looking for examples of reasonable adjustments to diabetes care services for adults with learning disabilities, so in the workshop sessions I was especially interested to hear about a diabetes education programme designed for people with learning disabilities and their carers. Nicola Winch, Diabetes Specialist Nurse and Sophie Treagus, Diabetes Specialist Dietician from Northamptonshire Diabetes Multidisciplinary Team described the Looking After Me and My Diabetes course set up for people with learning disabilities who may be unable to access standard structured education programmes for diabetes such as DESMOND[4]. Key features include:

  • two hour sessions each week for four weeks
  • continuity of day, time and venue for each 4 week course
  • attended by 6/8 people (a minimum of 4)
  • aimed at people with learning disabilities and their carers (paid or family)
  • open to people with type 1 and type 2 diabetes, with a new or longstanding diagnosis
  • handout detailing what is expected of carers before, during and after the course
  • carer action plans (to be shared if the individual is supported by multiple carers)
  • refreshers for previous attendees (particularly useful if carers have changed)
  • topics covered include: how the body usually works and what goes wrong in diabetes, understanding fat and sugar content of foods, managing medications, annual reviews and health checks
  • games and interactive sessions adapted from standard education programmes to make them accessible to people with learning disabilities
  • accessible food and activity diaries and pictorial action plans.

People with learning disabilities and their carers have told Nicola and Sophie that they have greatly benefited from the course and they feel that the course provides a safe environment to share experiences and ask questions. (Further details are given on the IHaL Reasonable Adjustments database http://www.improvinghealthandlives.org.uk/adjustments/index.php).

What the data means for people with learning disabilities – listening to experience

The conference nicely balanced presentations on the data with reflections on personal experiences and ideas for improving healthcare presented by people with learning disabilities.

The keynote address on access to healthcare by Crispin Hebron (Access to Health Care Lead at NHS England) and members of the self-advocacy group Gloucestershire Voices, considered what difference having better data might make to the real life health and wellbeing experiences of people with learning disabilities. Gloucestershire Voices concluded that the value of information alone is limited if it is not mixed with experience. This message was reinforced by members of Oxfordshire based self-advocacy group My Life My Choice who led an interactive session which helped to keep us all awake after lunch and provided a practical demonstration of the difficulties people with learning disabilities face when communicating about their health.

Equally illuminating for me were the views from delegates who were involved in the healthcare of people with learning disabilities in such a wide range of roles. Their experiences provided insights that would not be apparent from the data. Alongside the presentations given by people with learning disabilities this highlighted that despite the potential of the new data to improve the health of people with learning disabilities, understanding of where to direct change and how to ensure that change is meaningful for people with learning disabilities and their carers may be incomplete if the experiences of all concerned and their ideas for improvements are not heard.

Footnotes:

[1] In type 1 diabetes, the body no longer produces any insulin. This type of diabetes usually occurs before the age of 40 and often in childhood.

[2] When the body produces insufficient quantities of insulin or uses insulin inefficiently. This type of diabetes tends to occur later in life.

[3] A measurement of glycated haemoglobin which provides a picture of average blood sugars over the previous 8-12 weeks. This measurement is often used as an indicator of quality of diabetes management since it gives an idea of whether blood glucose levels are being controlled within recommended targets. Research into diabetes management for people with learning disabilities has sometimes taken absence of the recommended routine testing of HbA1c levels or results outside recommended targets as evidence that people with learning disabilities receive poor quality and unequal diabetes care.

[4] Diabetes Education and Self-Management for Ongoing & Newly Diagnosed is a structured education programme for those diagnosed with or at risk of developing type 2 diabetes.

References:

Anwar, A. J., Walker, J. D., & Frier, B. M. (1998). Type 1 diabetes mellitus and Down’s syndrome: prevalence, management and diabetic complications. Diabetic Medicine : A Journal of the British Diabetic Association, 15(2), 160–3. doi:10.1002/(SICI)1096-9136(199802)15:2<160::AID-DIA537>3.0.CO;2-J

Glover, G. (2016). Health and Care for People with Learning Disabilities. Presentation. Retrieved March 24, 2016, from https://www.phe-events.org.uk/HPA/media/uploaded/EVHPA/event_553/PHE_Learning_Disabilities_Conference_2016_slides.pdf

Shireman, T. I., Reichard, A., Nazir, N., Backes, J. M., & Greiner, K. A. (2010). Quality of diabetes care for adults with developmental disabilities. Disability and Health Journal, 3(3), 179–85. doi:10.1016/j.dhjo.2009.10.004

Taggart, L., Coates, V., & Truesdale-Kennedy, M. (2012). Management and quality indicators of diabetes mellitus in people with intellectual disabilities. Journal of Intellectual Disability Research : JIDR, 1–12. doi:10.1111/j.1365-2788.2012.01633.x

Second waves and new futures

by Liz Ellis

(All views in this post are the author’s and do not represent SHLD nor The Open Unviersity.)

This post in made in response to some of the issues that arose from one of the planning meetings for the next SHLD conference and also draws on some of the discussion from my final PhD chapter and a recent ESRC seminar series. During the SHLD meeting there was discussion about the conference theme and as we talked, we discussed how relevant historically based research was for people with learning difficulties today. This in turn led us to question what SHLD stands for and what it will look like in the future.

For me personally SHLD is closely bound up with inclusive research. My first academic conference was at SHLD and it was the first time I fully understood exactly what inclusive research was and how it worked. Since then I have used inclusive research (with varying degrees of success it must be said) in approaching my post grad and doctorate research. In starting my PhD research it became clear to me that things were changing and this was underpinned by the ESRC seminar series on inclusive research headed by Jane Seale. To explain the changes, I need to go back a little and talk about the early forms of inclusive research in terms of where it was done, what the outputs focussed on and the kind of co-researcher* involved.

Sites of research

SHLD is perhaps best known for the work around gathering the oral histories of people with learning difficulties who had previously been institutionalised. There was a recognition that as deinstitutionalisation gathered pace, the first hand accounts of life in institutions would be lost forever. These narratives, in creating a record of life from the inmates’ perspectives, preserved the history of a hidden section of society which was slowly being lost as the large institutions and colonies closed down. The effect of deinstitutionalisation from these large-scale, long-stay institutions resulted in the proliferation of smaller scale day services and group homes. This also coincided with (and IR supported?) the rise of the self-advocacy movement.

Thus inclusive research sites included day centres (as in my Masters degree) and more latterly, as people with learning difficulties moved out of the institutions and into the community, self-advocacy organisations for people with learning difficulties. The unifying factor in all these sites is that they are places where people with learning difficulties were grouped together, either involuntarily as in the case of the long stay institutions, or as sites of emancipation and activism as in the case of the numerous self advocacy and research projects carried out either with or by People First groups. In essence, the system of institutional care and self-advocacy created ‘ready-made’ samples of potential respondents for researchers wanting to work with people with learning difficulties.

‘Typical’ co-researchers

Following on from this, most people with learning difficulties involved in inclusive research tended to have had or continued to have institutional modes of living. They also tended to have mild or moderate learning difficulties and could use speech. In institutionally set inclusive research, the visit from the ‘university lady’ (as I was called during my Masters research) was the high point of the week. A common assumption about participants with learning difficulties in inclusive research is that they lead socially empty and meaningless lives. Dorothy Atkinson has described in detail the difficulties for academic researchers in breaking away from inclusive research projects and how researching with people with learning difficulties can lead to strong relationships developing over time.

Outputs

Twenty years ago an inclusive research project’s outcomes were frequently (but not exclusively) focused on the research process. The reasons for this were principally the need to justify using such a radical form of research and the political and emancipatory potential of using inclusive research. By clearly positioning the ethical and epistemological advantages to inclusive research (see for example Walmsley & Johnson 2003 and Garcia Iriarte et al. 2014) by transparent and reflective discussion, it is fair to say that inclusive research has now become an established research form.

This acceptance of inclusive research as a ‘valid’ research tool has been reflected in the way outputs from inclusive research has shifted from process to outcomes. It was during the last ESRC seminar that a delegate suggested that we might be in a ‘second wave’ of inclusive research. This point was emphasised by Mel Nind, who discussed the shift from process to product as being indicative of the next generation in inclusive research. This emphasis on the ontological rather than the epistemological is an important sign that inclusive research has matured. We are maybe at the point that we no longer worry about how ‘reliable’ and ‘valid’ the experiences of people with learning difficulties are, but fully accept those realities without them being diminished because of the supposed competency of the person.

New waves?

This shift or ‘second wave’ has been largely driven by changes at a societal level. Following deinstitutionalisation, many younger people with learning difficulties who might become involved in inclusive research have never experienced the same structural isolation. In my research this was highlighted at the first ESRC seminar in January 2013. Natasha, one of the co-researchers on the project, took a dim view of the assumption that I was or would become a central part of her life and would consequently experience feelings of loss at the close of the project. The reality of our relationship during the research process was that I was deeply grateful to her and the others for actually bothering to give me their time at all as all the co-researchers involved had busy and active social lives. This notion of people with learning difficulties as socially dependent and in danger of developing emotional attachment to professional/academic researchers is also reflected in the ethics process where ‘exit strategies’ must be outlined if researching with ‘vulnerable’ groups. This is no bad thing as many people involved in research, particularly oral history research, do, as Atkinson attests, develop intensive and deep relationships. However, for people with learning difficulties involved in more recent research such as mine, a visit from the ‘university lady’ is no longer the high point in the daily tedium of a residential institution or uninspiring day centre. Whilst the closure of such spaces has had some unintended negative consequences, including it has to be said making it easier for the inclusive researcher to locate potential co-researchers, it has also meant that many people with learning difficulties were no longer physically marginalised by being shut away.

However, the flourishing of self-advocacy groups in the wake of deinstitutionalisation is also under threat as groups struggle to attract funding. The restructuring of disability related benefits and services due to swingeing government cuts has resulted in people with learning difficulties leading increasingly atomised lives. For researchers, this diaspora of people with learning difficulties has essentially created an extremely hard to reach population to draw on for inclusive research. Liz Tilly (http://www.building-bridges-training.org) has documented some of the consequences of this with a group of co-researchers and self advocates who have now lost eligibility to support services.

So where next?

Challenges for future inclusive research will inevitably centre on who will be able to participate. The co-researcher who is articulate, verbal and often involved in self-advocacy, is going to increasingly become part of a hidden and hard to reach population. Researchers working inclusively might need to be directing their efforts on groups hitherto excluded from inclusive research such as those with severe and profound learning difficulties as well as a more general expansion in fields outside disability studies. It might therefore behove us to focus on the increasing number of marginalised poor people which will include those currently labelled as having mild or moderate learning difficulties and other disabled people who are considered to be not sufficiently impaired to receive specific disability benefits.

Whether this shift will close down avenues of inclusive research taking an historical perspective is another matter. The current government policy to reduce the size of the state is going to create significant social change whichever way the dice fall. As such inclusive research helping people to record their life stories will produce a record of events and perhaps, as well as producing valuable outputs, the process itself might have the same emancipatory potential as the first time around.

* I am using the term co-researcher to define any non-academic or professional engaging in the research process in whatever capacity.

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

Contraceptive choices for women with learning disabilities

Contraceptive choices for women with learning disabilities is an Open University research project, supported by a grant from Open Society Foundations (Grant No: OR2014-12989). This inclusive project set out to explore women’s contraceptive decision-making and sought to include women with mild to moderate learning disabilities as well as women with high support needs. Between December 2014 and April 2015 we interviewed 19 women living in several locations across the United Kingdom. You can read the Final Report on our Social History of Learning Disability website.

Jan Walmsley

Disability and Impairment: a technological fix

by Jan Walmsley

Disability and Impairment: a technological fix was the title of a great conference at the London Metropolitan Archives on Friday 27th November. LMA have done a lot of work on disability history including running FREE conferences, of which this was one. It’s a welcoming atmosphere, inclusive of students and experienced academics alike. They deserve to be congratulated.

Speakers’ interpretation of technology was pretty broad. It encompassed the 20-year-old Campaign for the Disability Discrimination Act, highlighted by Tom Hayes from SCOPE, and the portrayal of disabled people in eighteenth century England (Simon Jarratt), as well as what I usually think of as technology, namely gadgets and apps, (Peter Fuzesi), representation of disabled people in cinema (Richard Reiser) and in photography (Ian Jones-Healey).

In this blog I want to highlight two issues which stand out for me. The first is the question of what makes for effective campaigning. Tom Hayes (SCOPE Campaigns Officer) posed this question, intimating that the old fashioned graft of filling envelopes and chaining oneself to railings in the company of others was more effective in creating campaigning communities than the modern practices of tweeting, blogging, and Facebooking. It is a question I’d been pondering as I struggled to write an academic paper on the Changing Face of Parent Advocacy, comparing the local Societies which characterised the grassroots of Mencap’s predecessor organisation, the National Association of Parents of Backward Children, with the blogs and pretty continuous tweeting of the campaign for justice for Connor Sparrowhawk for example. I have some sympathy for the view that the old methods might reach more deeply into the communities they need to reach than social media which, particularly for older generations, is an alien world. Only time will tell.

The other issue is the question Sue Ledger, Vicky Green and I posed in our paper ‘How come we didn’t know this happened?’. Why does it matter that people with learning disabilities, their families, and their allies, know about the history of learning disabilities? We were recounting the work we are doing with Access All Areas to help their actors understand the history of institutions, so that they can in turn share this with other people in London through drama. It was one of these young actors whose quote ‘How come we didn’t know this happened?’ gave us our title.

Do people with learning disabilities now need to know about the old mental handicap institutions?

Even though I have made my name and even a modest living through researching and publishing about this history, it is still a question that troubles me. I have lived through an era when delabelling was all the rage, labels were blamed for many of the ills experienced by people with learning disabilities. But studying this history implies identifying with the label, and being interested in what happened to people with similar labels in the past. This sits uneasily with policies of inclusion and integration, which say we are not defined by our label. Other groups – LGBT, for example, or women – have fiercely argued to record and own their own history. People with learning disabilities have not made these arguments. I’m still not sure whether they should be encouraged to do so.

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Launch of ‘No Longer Shut Up’ – a celebration of the life of Mabel Cooper (1944-2013)

by Liz Tilley

On Friday 20th November 2015, members of the SHLD group attended the launch of the film of Mabel Cooper’s life, ‘No Longer Shut Up’. The event was hosted by Access All Areas, an inclusive theatre group who produced the film. It was held in the Barbican, London, a venue that held special meaning for Mabel and her friends.

Mabel Cooper receiving her honorary degree in 2010

Mabel Cooper, pictured with Professor Dorothy Atkinson, receiving her honorary degree from The Open University in 2010

Mabel Cooper was a truly inspiring woman, who was a key figure in the SHLD group and a self-advocate who made waves across the world. She championed the rights of people with learning disabilities, and was determined that others should not have to endure what she had experienced, incarcerated at St Lawrence’s Hospital, Catheram, for 20 years. In her words, people with learning disabilities should never again be ‘shut up’. She was passionate about the power of research and education to help society change, and upon her release from the institution in the 1970s, Mabel worked tirelessly to share her own story and advocate through People First.

Mabel had never known why she had been placed in an institution, and it was only through very careful archival work with her friend Dorothy Atkinson, that she was able to track down her notes and piece the story together. Mabel discovered that her own mother had been on the streets and unable to care for her. Her mother was put in an institution and they never met again. After a series of moves around various children’s homes, Mabel was assigned the label of ‘feeble-minded’ and was transferred to St Lawrence’s as a teenager, which she found terrifying.

While the trauma of those years never left her, Mabel embraced life in the community. She learned how to read and to travel independently, supported by her long-term friend, and fellow resident at St Lawrence’s, Gloria Ferris. Mabel gradually found the confidence to speak out about her experiences, presenting at academic conferences, and visiting schools to talk to young people. She was quite clear that real change could only occur when the hearts and minds of the next generation had been won.

Mabel sadly died in 2013. Very generously, she left some money to help continue her work. Mabel requested that her long-term supporter Jane Abraham and the SHLD group at the OU come up with a plan to support her legacy. After much thought, we decided to use the funds to make a film of Mabel’s life that could be accessed by everyone. Access all Areas were commissioned to make the film, and people with learning disabilities were employed as actors on the project. It is a powerful piece, and can be viewed on YouTube.

It was terrific that the film premiered at the Barbican because that was where, in 2010, Mabel was awarded an Honorary Degree by the Open University for her services to the community, and for the unique contribution she made to the OU’s Social History of Learning Disability Group. We all miss Mabel greatly and our annual SHLD conferences are not the same without her. She was an amazing advocate for the social history of learning disability, for inclusive research and for using life stories to inspire change. She was forthright and didn’t pull any punches! But she was also warm, funny and caring, and always helped others whenever she could.

Finally, I think it’s important to quote Jan Walmsley, who wrote:

“The fact that Mabel’s launch was in the same week as the All Party Parliamentary Group on Learning Disability discussed Transforming Care, the challenge of bringing the 3000 or so people in institutions back to their communities, reminds us that her work is not finished. And maybe she is right, we really must start telling young people about this Hidden History, those Forgotten Lives, and reassert her determination, to be No Longer Shut Up”.

The Welfare Reform and Work Bill: SHLD members attend All Party Parliamentary Group

On the 5th November 2015, Sue Ledger and Jan Walmsley from the SHLD Research Group attended a combined meeting of the All Party Parliamentary Group (APPG) on Learning Disability (chaired by Chris Heaton Harris) and the APPG on Disability (chaired by Lisa Cameron). The meeting was held to discuss changes outlined in the Welfare Reform and Work Bill.

More information, including the Report (and Easy Read versions), can be found on the SHLD Research Group’s website.