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In 1980 more than 50,000 people with learning disabilities in Britain still lived in a long-stay institution, a model of care first developed in the 19th century for people seen as unfit to be a part of mainstream society. David Towell (2021) explains the social transformation that followed.
Responding to successive scandals and inquiries that exposed the cruelty and neglect people living in these institutions were subjected to, activists developed and promoted an alternative vision and model of care. The term ‘An Ordinary Life’ was taken from a pamphlet published by the King's Fund (1980) that promoted supporting people with learning disabilities to live in ordinary housing as a radical alternative to institutional care. Over subsequent years this vision influenced the work of numerous agencies, public and third sector, involved in providing support to people with learning disabilities. The work of local and national campaigners lead to its eventual acceptance as a national policy in the White Paper Valuing People (Department of Health, 2001).
Historical perspectives are vitally important to effective policymaking and the development of services for the public. A failure to learn from the past often leads to bold claims about ‘new’ ideas and ‘radical’ reforms which invariably just reinvent the wheel and fail to avoid past mistakes. Over recent years ‘witness seminars’ have provided an important means to try to improve our understanding of key events or a particular period of policy development within the bounds of living memory. Witness seminars typically bring together researchers, policymakers, people undertaking or affected by policies and other key individuals that have studied or played a more direct role in the development of particular policies, new social movements or service innovations. Contributors address a particular subject from their own perspective, drawing on their memories or records of the time.
The Supporting Innovation in Adult Social Care (SASCI) Project
Innovation or doing things differently is often seen as a solution to problems. Adult social care might seem to be an area where new approaches will naturally flourish (with competition between providers, different people paying, choice over types of care and provider and so on). Yet, while there are many innovations and good evidence that some benefit people using care services, they do not always spread rapidly and often do not become mainstream.
Compared to other parts of society, little is known about innovation in social care and why good ideas spread or otherwise. Many organisations and people offer to help with innovation but not much is known about what they do and how they do it, or what works. The SASCI research programme has been set up to draw together experiences of innovating or changing things in adult social care to let others know what might help.
As part of the programme this webinar will consider the key themes of:
- The importance of evidence and values.
- The roles played by campaigners and other key influencers.
- How and why innovations spread and are sustained.
David Towell was born into a family where his sister, Patricia, had acquired profound impairments through childhood illness. His arrival was the occasion for her admission to institutional care. Much of his adult life, especially for 20 years as a leader at the King's Fund's, was addressed to changing this situation for Pat and everyone else excluded from equal citizenship. He now directs the London-based Centre for Inclusive Futures.
Ann Shearer was a journalist on The Guardian when she first learned of the often appalling conditions in what were then still called ‘mental subnormality’ hospitals. This led in 1971 to her co-founding the Campaign for Mentally Handicapped People, later called Values into Action (VIA), which worked for the replacement of hospitals with community-based services based on principle not pragmatism and disseminated international examples of good practice. It was also the first organisation in the UK to consult people with learning difficulties and publicise their views. VIA Scotland is still going strong.
Derek Thomas was a leading psychologist based at Northgate Hospital in Northumberland who played a pivotal role in helping to provide a coherent philosophical foundation for a new model of caring for people with learning disabilities, including through the influential paper ENCOR: A Way Ahead published in 1978. He also chaired the working group that informed the An Ordinary Life publication (King’s Fund, 1980). Derek later became Director of the National Development Team.
Jan Walmsley is a historian of learning disabilities. She founded the Social History of Learning Disability Research Group in 1994. This Group pioneers history by, with, and for people with learning disabilities, their families and those who work and support them. Her particular interest in the Ordinary Life movement is how it was spread and sustained to make it one of the most significant social movements of the late twentieth century.
People with lived experience
We will also hear from four people who have agreed to tell us about their 'ordinary lives'.
Ajay Choksi is a trainer and co-researcher at RIX Inclusive Research, University of East London (UEL). He joined the UEL in 2007 as a technical assistant. Ajay has a strong interest in technology and enjoys exploring how new technologies can help people who have learning disabilities.
Baljit Kaur is a co-researcher at RIX Inclusive Research, UEL. Baljit joined RIX during the Pandemic and has been studying how technology has helped people stay connected with others during this time. Baljit is passionate about helping and supporting others, particularly those who speak different languages. They are interested in finding ways that technology can assist people from diverse backgrounds.
Roselyn Weinberg is a co-researcher at RIX Inclusive Research, UEL. She began working with RIX on various projects in 2006. Roselyn has been involved in numerous training and research initiatives. She is a strong advocate who actively represents the rights of individuals with learning disabilities in different committees and boards. Roselyn is passionate about promoting inclusion and creating easy to read and easy to understand information.
Satvinder Kaur Dhillon is a highly skilled co-researcher at RIX Inclusive Research, UEL. With a passion for graphic design, she has made significant contributions to projects, including the Digital Champion Network. Her expertise in designing visually appealing and accessible websites has played a vital role in creating inclusive experiences for individuals with disabilities. Her commitment to promoting accessibility and inclusion showcases the powerful impact design can have on enhancing digital experiences and reducing inequality.
Ajay, Baljit, Roselyn and Satvinder will be supported by Gosia Kwiatkowska an experienced academic researcher and co-director of RIX Inclusive Research at UEL.
Gerald Wistow is Visiting Professor at the Care Policy and Evaluation Centre (CPEC) based at the London School of Economics (LSE). He has researched and published extensively on a wide range of health and social care services including those for people with learning disabilities. Gerald has also served in a variety of advisory roles supporting central government policymakers.
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Header image: Detail from the front cover of An Ordinary Life, the 1982 King's Fund project paper.