A friend 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.
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.
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.
Inside My Dance is Angela Lane’s story about how being a mother of a disabled child has impacted on her life and influenced her world view. The year-long project was a collaborative process during which Angela had the opportunity to examine what has been central to her experience.
I created three voice compositions from ten hours of recorded interviews, each of which examined a stage in Angela’s life. The first part, ‘Movement’, is about the first thirty years of Angela’s life which were characterised by a lack of self-belief. The second part, ‘Standstill’, describes the experience of being nailed down, set in concrete and locked in to a challenging situation. ‘Integration’, the final voice composition, explores the last ten years or so and is clearly defined as a time of personal growth and increased self-confidence.
You can listen to the 5 minute voice compositions on sound cloud here:
Inside My Dance was funded by Living Imprint. More about this project and others can be found on their website here:
The woman I’m currently working with is always breaking in to song. I thought it would be an idea to use snippets of her voice fading into the record on the soundtrack of her life story film. Easier said than done as she kept laughing…
You can listen to the singing and the laughing here:
Inspired by Daniel Meadows digital story telling
and the Life Story Café at Woolfson and Tay
here’s a story about my relationship with the River Thames:
In the Autumn I started a yearlong course supporting six disabled people to tell their stories. We spend every Monday together. I planned to have structured reminiscence sessions in the morning and time for the group to work on their own projects in the afternoons. However, once I met the group I realized that wasn’t going to work.
They are so polite and quiet and private.
Each week we start the day taking it in turns to say how we are and then share any work that’s been done. I set homework every week because a lot of what the group need to research has to be done at home. A typical task is ‘who is important to you in your life? Can you find photos of them, describe why they are important, and ask friends or family to help?” I write this at the top of a blank sheet of A4 paper and include a Makaton symbol or a photo appropriate to the task.
It’s amazing what comes back each week. Some are working on their own and don’t have any support from home. One woman doesn’t have a single photo or momento of her past. This is really hard for her and is a challenge for me as I’ve become reliant on photos to make books and films. Gradually as we’ve got to know each other and she’s feeling safer she is telling me lots of detail about her past and we’ve been able to use the internet to find the places where she’s lived and gone to school. She’s printed off maps and photos and is getting some satisfaction from her project and a sense of rootedness. Another woman in the group was adopted when she was a baby and still has regular contact with her birth mother. Her adoptive parents wanted to support her to express her place in both her families. One man in the group cries most weeks because he misses his mother who died a few years ago and he’s beginning to feel OK about it. The group is incredibly kind and supportive to each other. When we started we made a ‘Group Contract’ and agreed to look after each other.
This Monday is our last day together before Christmas and they’ve decided to have a party. Lots of mince pies and strictly no homework. Are life story projects supposed to make people more assertive? I know my place.
I went to a talk by documentarist Daniel Meadows- a charming man who is a photographer, oral historian and teacher and whose recent work explores digital storytelling. We can (and already do) use these ideas and Daniel is very generous with his experience and skill, describing the process of creating digital stories in tutorials. I seriously recommend you check out his website.
And finally, some very sad news about Stuart and Andrew (who I’ve mentioned in previous posts). Both had Alzheimers and they died within a couple of months of each other in the autumn. They are missed.