Tag Archives: learning disability

Life Story Workshop

In the Spring, when I was invited to share my life story work with fellow practitioners, I thought it was the perfect opportunity to try out some new techniques. Rather than doing a straightforward powerpoint style workshop I decided to adapt the round-table techniques I’ve been using with my current life story group of learning disabled adults. And I was delighted when Hilary, one of the group, agreed to support me for the day.

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Hilary preparing on the train

 

The programme for the day incorporated all the elements of the year-long course compressed in to bite size pieces. We agreed a contract, shared photos, practiced interviewing each other, used a range of useful equipment and thought about presentation and ownership.

Following a pattern and structure that was familiar to Hilary allowed her to participate and support with confidence. She particularly enjoyed sharing her completed life story book and DVD.

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Hilary showing her life story book

 

At the end of the workshop I asked the group to tell me how they felt life story work could contribute and inform individual budgets and activity choice. It was agreed that life story work is generally beneficial to self identity and confidence, helps define preferences, is about deep listening and noticing, supports transitions to new places and people and, perhaps most important of all, opens up channels of communication.

ImageHilary and Noelle enjoying a well-earned coffee

 

 

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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.

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.

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.