Caroline Norrie, Research Fellow at the Social Care Workforce Research Unit at King’s College London, reports from the annual conference of the Social History of Learning Disability (SHLD) research group, which is based at The Open University (OU). The conference was held at the Milton Keynes OU campus on 8 July 2013.
The conference, Avoiding More Winterbourne Views: What can we learn from history?, highlighted the life histories and experiences of people with learning disabilities – whether living in institutions or in the community. Margaret Flynn, author of the Serious Case Review into Winterbourne View was keynote speaker and opened the conference with a presentation about the history of Winterbourne View and lessons learned. Margaret drew attention to the need for commissioning organisations to improve their performance – making better choices of providers and carrying out closer monitoring of contracts. Margaret questioned, for example, why commissioners are involved in building new long stay institutions and paying to keep service users with learning disabilities in them. Margaret also commented on how the individuals managing the private equity firm which ran Winterbourne View (which they regarded as one of their most profitable homes) managed to escape both media investigation and criminal prosecution. Margaret called for the introduction of a new law to make corporate negligence a crime, which could be used to prosecute unscrupulous private care home owners. Margaret also underlined the continuing need for better and customised inspections.
From Newcastle, Tim Keilty and Kellie Woodley of self advocacy organisation Skills for People, gave a presentation about the production of a book based on residents’ memories of living at Prudhoe Hospital. They discussed the history of the institution (built in 1913 and only closed in 2005) which by the 1960s, housed 1,400 residents. Despite the harsh regime, former resident Kellie Woodley described lighter moments and the satisfaction of resistance, for example lying in wait for a disliked member of staff to enter the room, knowing she had balanced a bucket of water above a door or placing a contraband needle on the chair of another staff member.
Oxfordshire Family Support Network, a small charity run by carers for carers described their Changing Scenes Project, which offers peer to peer support for older families. Nationally, 60% of adults with a learning disability live with family carers. And approximately one-third of adults living in the family home live with carers aged 70 or over (source: Mencap Housing Time Bomb Report, 2002). This presentation consisted of conversations with four older family carers who related their experiences of battling on alone in the past without help, abusive incidents, and in more recent times standing up for their rights to get the services they wanted. One mother celebrated personalisation as a huge breakthrough in providing appropriate care for her family member.
Keeping the discussion in the present day, service user, Angela Still, from Central England, People First, presented the difficulties of community living such as isolation and her experiences of financial abuse by a neighbour. She outlined how, with the help of People First, she had been assigned a case manager, had managed to have her abuser prosecuted, and moved to a new house where she was now happy, safe and secure.
Sue Dumbleton and Jan Walmsley from the OU discussed how another Winterbourne View could be avoided. Sue, drawing on her experiences of being the parent of a young adult who has a learning disability, reflected on ‘what works’ in supporting people with a learning disability to enjoy a safe and productive life of their choosing and the role of personalisation in this.
This conference also included international perspectives with presentations from Norway and Ireland. We learned about the development of services for people with learning disabilities in Norway through the life history of Ruth, who was kept in an institution for 20 years. When Ruth finally moved to living in the community, the same staff from the institution were employed as her carers and she still had to battle to be treated as an individual and not be degraded. It was only when Ruth was given the power to choose her home care provider that she was finally free to live as she wished – “I am no longer angry because now I can decide for myself.” This presentation was given by Bjørn-Eirik Johnsen, Leif Lysvik and Terje Thomsen from Harstad University College.
From Ireland, Kelly Johnson, Rob Hopkins and Joe McGrath (Clare Inclusive Research Group) gave a talk about the difference between ‘belonging’ and ‘inclusion’ in a small village in County Clare with reference to the life history experiences of Joe McGrath.
Rachel Fyson from the University of Nottingham took the long view and highlighted how abuse is a constant and does not just happen in hospitals and large institutions. She argued more needs to be done to understand and prevent abuse wherever it takes place.
This annual conference was dedicated to Mabel Cooper, MA (1944-2013), a long standing member of the SHLD group, who passed away this year. The audience watched a video, shown on BBC2 in 1999, in which Mabel described her life in an institution – and the lasting impact this had on her. Mable left the institution in 1977 and during the 1980s, was Chairperson of Croydon and then London People First and worked with people with learning disabilities supporting others to speak up for themselves. Mabel’s gift for storytelling and her reflective ability meant her life story became famous around the world after it appeared, to great acclaim, in SHLD’s book Forgotten Lives (1997). Mabel’s personal testimony was also put to practical use in her work in schools. Drawing on personal experience, she was able to educate children about the lives of people with learning disabilities. Mabel’s friends Gloria Ferris, Jane Abraham and Dorothy Atkinson spoke movingly, remembering their friendship, including how they first met. “In making sure her story was told, and recorded, Mabel has left an enduring legacy”.
From my own personal viewpoint, working at SCWRU on a project about adult safeguarding, I found this conference particularly useful as it contextualised the history of care for people with learning disabilities, while at the same time raising current issues and debates. Best of all though – and what made this conference highly memorable – was it being characterised by inclusivity and forefronting the voices of people with learning disabilities throughout.
Caroline Norrie is Research Fellow at the Social Care Workforce Research Unit, King’s College London. She is working on: Models of safeguarding: a study comparing specialist and non-specialist safeguarding teams for adults – currently in its fieldwork stage.