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.

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One thought on “WAITING FOR SOMEONE TO LISTEN: mothers’ experiences raising disabled children

  1. Pingback: Waiting for Someone to Listen | Groundswell

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