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- Author or Editor: Jan Walmsley x
With contributions from distinguished authors in 14 countries across 5 continents, this book provides a unique transnational perspective on intellectual disability in the twentieth century. Each chapter outlines different policies and practices, and details real-life accounts from those living with intellectual disabilities to illustrate their impact of policies and practices on these people and their families.
Bringing together accounts of how intellectual disability was viewed, managed and experienced in countries across the globe, the book examines the origins and nature of contemporary attitudes, policy and practice and sheds light on the challenges of implementing the UN Convention on the Rights of Persons with Disabilities (UNCPRD).
What does it mean to live a good life? Why has it proved so difficult for people with intellectual disabilities to live one? What happens when we make a good life the centre of our consideration of people with intellectual disabilities? These questions are explored through a re-examination of ideas from philosophy and social theory, and through personal life stories. This important and timely book provides an analysis and critique of current policies and underpinning ideologies in relation to people with intellectual disabilities and explores ways in which a good life may be made more attainable.
‘Leadership’ is a word like ‘quality’. It has so many meanings as to be almost useless. And yet, what would we do without it? In one sense, this whole book has been about leadership – many of the authors are leaders; they are at the forefront of implementing change, and taking risks to do so.
We have seen in the academic literature a shift from looking at individual leaders, born not made, to seeking out the secrets of ‘leadership’, creating systems that operate well without requiring superhuman qualities to glue them together. Peter Drucker put it well:
No institution can possibly survive if it needs geniuses or supermen to manage it. It must be organised in such a way as to be able to get along under a leadership comprised of ordinary human beings. (Drucker, 1999, p 35)
Today’s challenge is to create leadership across as well as within organisations. Since we have yet to get leadership right within discrete organisations, the nature of the challenge is immense.
The authors in this final section have been grappling with what the word ‘leadership’ means and how it should be exercised if we are to move towards co-production. Undoubtedly, a fluent dialogue across boundaries – which is what we have argued co-produced services require – will demand more inclusive forms of leadership, leadership that is no longer the preserve of the few, but is shared or distributed across organisations and individuals. Change will not happen without different leadership models, although we need to move on from believing, as politicians appear to think, that it is simply a question of putting clinicians rather than managers into positions of power.
Despite considerable policy and legislative changes over the past century, society continues to exclude, neglect and frequently damage people with learning disabilities. Hence the need for families to advocate on behalf of their relatives. How might social work respond? At the time this chapter was written an initiative from the English government was launched to pilot a named social worker for people with learning disabilities (SCIE 2017). The fact that such an initiative was perceived to be needed in 2017 is, at first sight, quite astounding. As I will demonstrate in this chapter there is overwhelming evidence from families dating over the past 50 years that they want a trusted person to support them both in navigating around the services they may require, and in managing the emotions and stresses associated with bringing up and supporting a family member with learning disabilities. There is also evidence, almost as convincing, that having that trusted person can avert a crisis when family carers become ill. But, with few exceptions, families have looked in vain for such an individual.
The Named Social Worker initiative was directed at individuals at risk of hospital admission or admission to an Assessment and Treatment Unit, not families. This continues a trend that was noted as long ago as 1996 by researchers Burke and Signo (1996: 109): ‘Many professionals consider that their work is with the person with disabilities, independent of their family … this could worsen family functioning because the whole family needs support and counselling’. Although unfashionable, I tend to agree that attention to the whole family, particularly when the person in question lives with them, is vital.
One of the challenges we face in creating new ways of thinking about public services and healthcare systems is finding the right language. What do we call the people traditionally known as patients, service users or clients? All these terms convey a sense of passivity. None hints at mutuality, reciprocity or the dialogue advocated by many contributors.
It has been a problem, not because we want to dance on academic pin heads, but because language shapes the way we think and act. Finding language that encapsulates changed relationships between provider and recipient is a matter of urgency. In considering this challenge, my instinct was to look at the radicals of the disability movement, who have apparently changed the way we think about disability: from being an individual tragedy, to being something largely created by societal barriers. Are there similar lessons to be learnt and applied more widely, to ‘people with long-term conditions’ for example?
The discipline of medical sociology has dominated the way the impact of ‘chronic illness’ – what we now term ‘long-term conditions’ – has been studied. Influential ideas about the role of medicine as a way of controlling a common form of deviance in society – illness – were developed by Talcott Parsons, a sociologist publishing in the 1950s. Whereas healthy people (according to this view) fulfil their functions as paid and unpaid workers, sick people opt out of contributory roles. A healthy society requires illness to be managed in such a way that individuals are restored to health. Medicine’s part is to legitimise the sick role temporarily, by signing sick notes and the like, on condition that sick people follow doctors’ orders and return to normal functioning as soon as possible.
The chief executive of my local acute hospital is a charming woman and has done a fairly good job of restoring its tarnished reputation. Recently, I had the opportunity to attend a prestigious event to hear her speak about the leadership challenges of delivering better quality at lower cost. As I listened, I fell to thinking about my recent experience at the hospital she runs.
I had been referred by my optician who had noticed the cataract. My GP was happy to refer me on for the operation without seeing me. She sent me the Choose and Book form and I chose my local hospital, which has a good reputation for eye surgery. Although the wait was much longer than for a slightly more distant private provider, the operation had gone well, and my sight was much improved. If I had had the opportunity to complete a Patient Reported Outcome Measures (PROMS) questionnaire, such as they offer for hip and knee replacements, varicose veins, and hernias, I would have been able to give a positive account. The trouble was, the process was protracted and unpleasant, and unnecessarily costly both to me and, I presume, to the hospital.
It was my post-operative visit. The appointment time came by letter. It was scheduled for a time when I was on holiday. I needed to find time to phone them, and then came another letter with a new time. Luckily, this was one I could make, but this had all taken a week, and the visit was therefore later than was seen as desirable.
This chapter explores the way of positioning biographical research and practice on a top-down/bottom-up matrix. It questions the claims for empowerment through biographical work. It does not suggest that any one positioning on the matrix is more or less desirable than the other. The chapter offers a matrix as a form of self-evaluation and reflection on research processes. In also considers issues such as ownership, power in research relationships, presentation, structure and process. Topics discussed include: the application of the research matrix; biography in top-down research; biography in bottom-up research; top-down practice; and bottom-up practice.
This chapter provides a case study of an important policy goal, which is the centrality of paid work. It is also considered as the ultimate badge of citizenship and inclusion. The chapter outlines the different ways that work has been made for people who have intellectual disabilities. It also shows the way work has been socially constructed in different eras, and asks whether the modern fetish around work as a defence against social exclusion is really justified.
This chapter talks about the different ways the problems presented by intellectual impairment has been framed and the different solutions adopted. These include the problem in the early twentieth century, to the current one, which is the presence of the denial of opportunities and supports to live a good life. The chapter also argues that since the twentieth century, people have moved from excluding those who are regarded as unequal under the social contract to the theoretical inclusion of these people within this framework.
This chapter tries to determine how a good life has been constituted at different times and in different places. It does not aim to provide a detailed account of the nature of ‘a good life’. Rather, the chapter tries to provide some glimpses into how a person may think about a good life and the way the definitions of it are framed by place and time. It also explores the different values that seem to support the idea of a good life during the twenty-first century in most of the ‘developed countries’. The increasing tension between the idealisation of community and the growing focus on individualism in these societies is also studied.