Preparing the ground: how to begin life story research with learning disabled adults

In September I met the six people who I’ll be supporting to tell their life stories for the next nine months. They are a self-selected group who signed up for the course at the ‘Choices’ event I described in my last post. They all have learning disabilities. Every year at this point I wonder how we are going to progress, as a group and also individually, and have to trust in the process I have developed over the years supporting learning disabled adults to find their voice.

We have spent the first few weeks reminding the group about what a life story is, the skills we’ll learn and develop and getting to know each others communication difficulties and strengths. I structure the course by setting a weekly research task, to be done at home either independently or with the support of an ally. After two weeks of nothing coming back I realised we had to contact with the groups allies at home to make them aware of the commitment required.

In the spirit of my approach, ‘Nothing About Me Without Me’, I made the phonecalls and wrote the letters with each member of the group, who were as involved as they were able to be. I also made a mental note that next year, during the ‘Choices’ event, having an ally willing to help may have to be a condition of joining the course. In my experience, the rapport and trust built with the ally, be they family member or carer, directly benefits all aspects of the life story process. The members of the group witness the growing relationship between day centre and home and are able to be more at ease with their stories and more fully themselves.

I am always struck too by how rarely the parents of disabled children have the opportunity to share their experience, which is often filled with difficulty and regret. The relationships I build with families is always a very precious side-product of my work.

So now we’re getting somewhere. I’m learning about the places where people have been born, the names of their mums and dads and siblings. And through this very basic information we are beginning to bond as a group and develop relationships based on trust. It’s a slow process, but one which I know will be incredibly rewarding.


One thought on “Preparing the ground: how to begin life story research with learning disabled adults

  1. sarah gilpin

    WOW, this initial stage sounds very hard work. Interesting to reflect that we all need allies – but to be effective, allies do need to know who they are – as well as being willing and able to try to do what we ask of them.


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