As a Research Fellow in Oxford in the 1980s I directed research projects on child abuse investigation and child protection. These studies led me to conclude that evidence was too often poorly collected, neglected, misinterpreted or over interpreted – with dire consequences for the lives of children. From this point on I worked to promote wider appreciation and greater acceptance of participatory methods within research and to improve the quality of training in research/investigation methodology. As a participatory researcher I work ‘with’ not ‘on’ those who are focus of studies. Currently I am Professor of Research Methodology at the University of Durham.
My involvement with vulnerable people began early in life when I lived on a rough council estate in Birmingham. I was eight when I witnessed ‘Bernard’, a 34 year old local man with learning disability, being mercilessly bullied by gang of school children. That memory still haunts me.
I became a teacher and taught pottery to people with mental and physical disabilities in a day care setting. Later I taught at a Deaf and Hearing Impaired Unit of a secondary school and worked in a Residential Health Centre for people with severe disabilities. Those experiences taught me the importance of developing a more inclusive research methodology, one which encompassed sensory methods of data collection and interpretation working in collaboration with traditional mixed methods i.e. word and numbers based approaches.
I’ve been invited to be an expert witness at National Child Abuse enquires and acted as a consultant to national organisations and institutions to enhance the protection of vulnerable people who lack agency. During the 1980s there were times when my insights were used positively to improve already robust children’s complaints systems such as at Barnardos. However, there were other institutions who used my advice merely to enhance the wording of policy documents whose purpose was to protect the institution not protect disabled people from abuse.
My awareness of current disability issues came from working with excellent colleagues at the Centre for Disability Studies at the University of Leeds. However, most of my understanding of disability comes from my best teacher, my daughter Anna. Our life together continues to be challenging, life enhancing and changeable. Just when I think I have learned the way to live a different life, she changes and life changes. Anna with her autism and learning disability helps me understand others with a disability. She’s been holding my hand and teaching me ever since.
Despite a long-standing trend towards developing an inclusive society the ‘voices’ of the least able in society is often missing from current debates. Now I work with my daughter and a small number of people with significant disabilities over an extended period to develop methods of communicating with them and to learn about their lives. We work together. They want to tell their stories and we need to tell them. It’s the starfish principle.