Workshop 2 - Day one

The ethics of life story work

Liz Tilley

Building Bridges Training was founded in September 2009. In the following summer a short term project was set up to enable people to 'research their own lives' and with the group member's consent, to use this data for a PhD thesis. The project was initially planned to include in-depth interviews and three focus groups. However the group members became caught up with the role of being researchers, and clearly articulated that they wanted to continue after the research project came to an end, so further grant funding was sought. Five years later the group continues to go from strength to strength, researching the issues affecting them and their friends. Their research enables others to have a better understanding of these challenges.

The group has had a number of articles published in both practitioner and academic journals, written two research reports and made a short film.

This workshop will consider the ethical dilemmas their success has meant for myself as the founder and only non-disabled person directly involved in the group. These issues and dilemmas cover anonymity and confidentiality, the need for flexible roles, and the need for me to also be an advocate and supporter and whether this conflicts with my role as a co-researcher. Power, ownership and control of the research agenda will also be discussed.

View the PowerPoint presentation

Bad life experience

Angela Still

Several years ago I was living in a block of flats. One of my neighbour's sons used to hang around our block of flats. He would knock on my door asking for things like water and foil, which I gave to him, so he came into my flat but he took money from me. I thought his mum was my friend but she put pressure on me to take out a crisis loan from the Job Centre and give her the money. It was £69. In the end my friend Kelly who worked at People First suspected something was wrong and I told her what had happened. Kelly phoned the police and they came and took a statement from me. It took a long time for my case to come to court and this worried me, as they kept hanging around the block of flats where I lived. The Victim Support Service got in touch with me, which helped me. They showed me and Kelly around the court and told me what would happen. People First managed to sort me out some regular support which was a big help. I went to court twice, each time with a support worker. In the end the mum and son went to prison because they had done other things wrong and my case was dropped. I think I should have gone to the police earlier, but I thought the woman was a friend and that she helped me. I gave her the money to do my cleaning, which she didn't do. I had to pay the money back that she took out every week, which left me short of money. She never said that I would have to pay the loan back. Whilst I was at my old flat on the 2nd floor, I fell down the stairs more than once and it took a long time to get my bungalow I live in now, which I don't want to move from as it is part of Neighbourhood Watch.

Biographies

Liz Tilley - Liz is strongly committed to the full inclusion of people with learning disabilities in all aspects of life, and has had regular professional and social contact with people with learning disabilities for over 30 years. She is founder and director of Building Bridges Training, a social enterprise of people with a learning disability which provides training focused on making a difference to people with a learning disability. Liz also works as a part time lecturer in social care at the University of Wolverhampton. Previously, Liz founded and for 20 years was Chief Executive of a voluntary organisation in the West Midlands, which provided a wide range of services and opportunities for people with learning disabilities. Prior to this, her career was in special education. She has a particular interest in community inclusion, person-centred approaches, parents with a learning disability, health and well-being and advocacy. Liz has regular social contact with friends who have a learning disability through Jigsaw, a small charity to provide social and community opportunities for local people with a learning disability, including 'the curry club' and a walking group.

Angela Still - I was born in July 1955 and am 59 years old. I have been a member of Central England People First for over 15 years. I was Chair for two years and I am now currently a regular member of the Management Committee. I have recently attended meetings with Voice Northants who provide support to victims of crime. The meetings are to help Voice deliver a better service to victims of crime. The two main areas covered at the meetings are People with Learning Difficulties and People with Mental Health problems. I also go to the Local Partnership Board Meetings in Kettering and am a Local Champion.