Category Archives: oral history

Reflections on doing life story work with people with dementia

Earlier this year I was invited develop a process to embed life story work at a care home for people with dementia with the aim of enhancing the day to day lives of the residents.

Life story projects have the capacity to be beneficial to vulnerable people by supporting ‘self-hood’, increasing self-esteem, providing a place to express loss and to grieve, improving the continuity and quality of care and offering opportunities for reciprocal conversation.

My proposal set out a guide for implementing group work, much along the lines that I’ve done for many years with learning disabled adults, (see previous post). The methods that I’ve developed use group discussion, reminiscence and turn taking to gather stories. After the first introductory session in the care home I realised this approach wasn’t going to work, so, together with the permanent staff, I’m adapting and developing a practical and workable model.

  • Group versus 1:1

Group work wasn’t the most appropriate approach for a number of reasons. The narrators all have hearing loss and are quietly spoken which makes round table discussion difficult, but more importantly, their memories are private. Although some of the group might get along quite well with each other, their relationships are made difficult by the extent of their memory loss. They seem to prefer talking to the person closest to them in a private and focussed way.

Life story work is fundamentally a 1:1 activity and with this client group it doesn’t appear either a practical or ethical course to make it otherwise. By the second session we had divided the group in to three groups of two, each with a member of staff. Rather than sitting around a large table, the small groups used different parts of the room. This created a more intimate and focussed atmosphere, but was not ideal. By the end of the third session, listening to feedback and from my own observations, we have decided to work 1:1 in either the quiet lounge or resident’s rooms. We came to this conclusion after noticing that the room was quite noisy, thus making talking & listening difficult, and also the distraction of some residents who find it difficult to concentrate ( the room is used as a thorough-fare). Also, as interviewers, we were either working with one or other of the residents in our small group. What should the other person do while it was not their turn? Dose off or feel ignored or become distressed?

  • Using existing material

All the residents have some information gathered by staff from family members from the time they arrived at the care home. The extent of the detail in these accounts varies from a few paragraphs of basic life events to rich and colourful stories of lives lived. Most of the residents have photo albums. These accounts are providing a useful starting point for the resident’s life story projects and in some cases can be sufficient, with the addition of selected photos & images to create excellent projects. Some of the resident’s family members are able to join the sessions and can corroborate and elaborate on the existing information the care home has. The role of the staff member then becomes one of making  sense of gathered information and presenting the life stories in an accessible and attractive way.

There are some excellent guides to doing life story work with people in this client group on websites like Dementia UK. Having a guide and template for gathering experiences can be very helpful. See http://www.dementiauk.org/information-support/life-story-work/

Search engines are a fantastic resource when photos aren’t available to support or trigger memories. Searching for and printing images and information, for example about a school or regiment, demonstrate interest and provide illustration to otherwise wordy pages of type.

  • Memory and imagination

To my horror I hear myself saying ‘Do you remember…’ during the sessions. This is distressing and unnecessary, but hard to skillfully avoid. I’ve found that it’s better to talk around a subject in an apparently casual manner and wait for the narrator to add their voice in a way that doesn’t make them uncomfortable or remind them of their memory impairment. Stating known information clearly is effective in creating a safe environment. For example, ‘You got married in November, I wonder what the weather was like?’. The narrator is then free to talk about what they wore, who and where they married, or the weather in November, without feeling they are being interrogated about something they have no recollection of. There is also a need to redirect people away from distressing memories in to safe territory as necessary. This is especially important as a session draws to a close. Fortunately the staff working with me continue to be around later in the day.

Thanks to an email exchange with Sam Robson from Groundswell Oral History for Social Change  http://www.oralhistoryforsocialchange.org  I recently found out about Anne Basting’s TimeSlips method: http://www.timeslips.org – a story telling approach that frees people with memory loss to imagine stories. Working alongside this group has made me question the emphasis we place on the real versus the imagined. From personal experience I understand that for a person with a diagnosis of dementia to function well it is necessary for them to feel at ease. Spending two hours asking them to recall their memories about various aspects of their lives, when they clearly aren’t able to, doesn’t create ease & contentment. Over the next few months I’ll continue to notice what is effective in eliciting and recording the resident’s stories and put together a practical & ethical guide for doing life story work with this client group.

How Hilary found her life story

Hilary is part of my life story project group this year. We’ve been working together since September 2012. There are six people in the group and we spent until March gathering information using a range of methods and skills.

One of the most interesting and fruitful catalysts for memories was the round table turn-taking sessions we used in the first few months. In previous years the participants had a lot of help from family members in preparation for this, but that didn’t happen with this group. They rarely had any material to bring to the sessions and a productive and fun pattern evolved as the weeks went by. Everyone turned up, sat around a large table and took turns to talk about their own experience on a given theme. Lisa, my co-worker, and I wrote down exactly what was said and we encouraged the group to ask questions of each other so that they could develop interviewing skills. In this way Hilary gradually grew a fascinating collection of tales about her family, schooling, work experience and home life. The round table method was the most effective gathering technique used.

Hilary invited her older sister, Lesley, to come to an afternoon session to fill in some gaps about her early years and to confirm dates and specific details. The previous week was spent developing a range of questions that the rest of the group came up with. These included an interesting insight in to what they were curious about, for example, ‘Did Hilary cry a lot when she was a baby? How much did she weigh? Did she ever kick the cat?’ Lesley was warm and open in her responses, (no, Hilary didn’t kick the cat, and she was a very good baby), and Hilary was delighted to have her sister there to contribute to her story.

DSCF6110 Hilary aged 5 years.

Hilary used photos to trigger memories and tell us about her life. She couldn’t find any of her early years, but Lesley searched in the loft and found a collection of photos that had belonged to an uncle and included some precious baby pics.

Another popular method we used to capture stories became known as the ‘life story road trip’. After getting to know the backbone of the group’s stories it was possible to identify gaps in each. Hilary wanted to visit locations where she’d lived and worked during her life time. Each trip and digital photo was a trigger for more recollection. And the trips were a lot of fun on most occasions. When more difficult issues arose, for example a member of the group wanted to visit the last place she’d lived with her mother before moving in to residential care and found it very painful, the rest of the group were amazingly supportive.

DSCF6120 Hilary outside St Peter’s Place, Brighton.

Through a combination of round table sharing, photos, road trips and the interview with her sister, Hilary is happy that she has researched her life story thoroughly and is now in the process of typing up. Each week she selects a page or so of story and gets set up at a computer in the staffroom and types all day- another skill that she is perfecting as part of the project.

DSCF6271 Typing up. May 2013.

A big THANKYOU to Hilary for giving me permission to share her story.

WAITING FOR SOMEONE TO LISTEN: mothers’ experiences raising disabled children

This project came out of a larger body of work led by Zeida-Lane Associates http://www.zeidalane.co.uk/index.php in which they worked alongside many people with learning disabilities navigating their way through making positive changes in their lives. For a number of reasons it was difficult to involve mothers & fathers in the project and I was invited to lead a short, specific piece of work in collaboration with invited parents in which they would have their stories recorded. In January 2012 I met up with five parents to introduce myself and my life history practice and I explained what the experience of being interviewed would be like and how their stories would be shared. Of the five, all but one agreed to take part and I set up interview dates with them at their homes. All four participants are women, currently living in East Sussex.

The motivation to volunteer for this project was twofold: to have their stories witnessed and recorded but also to create a valuable resource to be shared.

I prepared a selection of themes to explore the parents’ stories;

  • Experience of disability prior to the birth of your child
  • The pregnancy and birth of your child
  • The early years
  • Dealing with attitudes of those around you
  • Support from family
  • Other children
  • Practical impact on your life
  • Difficult decisions
  • Experience of counseling
  • Getting a diagnosis
  • Religious or philosophical beliefs
  • How the experience has changed you
  • What keeps you going
  • Advice you might offer someone in your situation

The interviews took place between February and April 2012. Following each interview I sent a CD of the recording to the interviewee so that they could review and edit their story and I wrote a detailed summary and log. When all the interviews were completed I edited together 14 tracks, linked by content, to create over 100 minutes of material. The result is a double CD of the four women speaking openly about their experiences raising a child with learning disabilities. Each of them has listened to a draft version of the CD and has given their consent to share it. The women have written a short piece about themselves and their words, along with a photo, is included in the CD insert card.

In this extract one of the mothers, Janice, talks about how she dealt with the attitudes of other people:

In December 2012 I invited the women to feedback about the experience of recording their stories.

What was the experience like?

‘It was as if I was waiting for someone to sit down and listen, as if something was in a pot and you took the lid off and let the steam out.’

‘It was a very interesting experience in many ways. Firstly, it felt a real privilege to be able to speak freely and honestly for a long time. Very few people know about me as a person. With this interview, I feel as if I have left a piece of me, my life with my son, my experiences and how I have coped with things, since he was born.’

Was there any lasting impact?

‘I like to feel I have left a legacy for my daughter.’

‘Yes, it was a big relief that I told my story. I feel that it may help someone out there and that’s a great feeling. I hope that hearing my story may encourage people to tell their stories.’

Did any of your responses surprise you?

‘To start with, yes, I can speak! And that does boost your confidence. I sat down and listened with with my husband and he said it’s beautiful, the way you’ve told your story.’

Who would you like to hear the CD?

‘Family Intensive Support Service, Norah Fry Institute, Pediatricians, anyone working in Learning Disability Services and Social Care.’

‘Teachers, doctors, GP training, GMC.’

‘Care for the Carers, Carers UK, students studying any Social Care Degree, Adult Social Care Commissioners, Learning Disability Teachers and TAs, County Cousellors, MPs, health facilitators, GPs, Learning Disability Nurses, Clinical Commissioning Groups.’

Conclusions:

The oral history project was successful in meeting it’s aims. The collaborative process made it clear that the women were perceived and valued as experts who were choosing to record their experiences. In return for their participation and valued contribution, the women were given a copy of their interview/s. From the feedback I received it appears that the experience was positive and the recordings valued. All the women agreed it was a ‘good experience’. In a wider context, the project has created –WAITING FOR SOMEONE TO LISTEN– a valuable resource for anyone who is in a personal or professional relationship with the parent of a disabled child.

If you would like a copy of WAITING FOR SOMEONE TO LISTEN or would like to know more about the project get in touch.

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.

Inside My Dance-oral history 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:

http://soundcloud.com/noellemccormack/sets/inside-my-dance/

Inside My Dance was funded by Living Imprint. More about this project and others can be found on their website here:

http://www.livingimprint.org/insidemydance/