Second thoughts about ‘allies’.

My friend Sarah commented on my last post which got me thinking:

‘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.’

Life history research is a collaborative partnership between the interviewer and the narrator. It’s success depends on lots of variables including relationship, preconceptions, perceived audience and agenda. The process becomes potentially even more complex when an intermediary is introduced.

By calling intermediaries ‘allies’ I inferred that the effect was always positive, but that’s not always the case. It’s important to think about the balance of power in a relationship involving an intermediary. Someone who is already challenged because of their cognitive impairment is unlikely to challenge a version of their story given by a parent or carer who remains a powerful influence in their life. The narrator may feel unable to communicate facts or experience about their lives because of potential conflicts of interest. For the same reasons an intermediary may choose to tell a version of the narrator’s life that puts them, as parent or carer, in a positive light.

All this considered I continue to invite parents and carers to contribute to the life stories of the learning disabled people in the group, because without their support it would be impossible, but at regular intervals I stop and reflect on how the unique voice of each participant is emerging and how authentic their stories may be.

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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.

A short film about life story projects

https://vimeo.com/49998717

I made this film for an annual event that advertises courses available at our local council day centres for people with learning disabilities. It was accompanied by a photo display board, a few examples of completed projects and some enthusiastic ex-students!

Life Story Celebration

A couple of weeks ago the six learning disabled adults I’ve been working with since October completed their course. Each created a life story book and digital story DVD. We celebrated the end of the course with a party and everyone invited family and friends. The group took it in turns to show their films and receive their certificates. Lots of pride in achievement and genuine interest in everyone’s story. I’ll be starting another course in September and look forward to getting to know six more people through their stories.

I’m writing a …

I’m writing a paper about some of the challenges intrinsic to the life story work I do with people with learning disabilities:

‘That’s a butterfly net and some very long legs. They are my long legs. My Dad had long legs. Daddy long legs’

Digital media as a tool for capturing and sharing the life stories of learning disabled adults.

People with learning disabilities are particularly vulnerable to having their life stories hijacked. By acknowledging the inequality of the interviewer-interviewee relationship and deliberately stepping into a position ‘alongside’ the narrator it is possible to reduce both the power and bias of the interviewer.

Sensitively tuning in to individual communication styles, developing a culture of openness and trust and adjusting to the narrator’s pace of cognitive reasoning can create the foundations necessary to allow individual stories to be told and celebrated.

The accessibility, cost and ease of use of digital media facilitates this process. Drawing on my experience, together with related research and inspired by the development of digital storytelling techniques, I will outline the methods I have developed, in both individual and group work, to address the many challenges of recording the authentic voice of learning disabled adults.

Sound Advice

Over the last couple of months I’ve been working on an oral history project that sets out to record the life experiences of parents of disabled children. The four women who took part  have each responded to a series of themed interview questions that reveal how their experience has shaped their lives. At the end of the interviews I asked the women what advice they would give to themselves if they could go back in time, or to new parents in a similar situation. This piece, ‘Sound Advice’, is an edited composition of all four women’s responses to that question.

The project has been commissioned by FLO which is funded by East Sussex County Council.

Thanks to Olivia, Janice, Zarifa and Mary for their honest, open-hearted and generous participation in the project.