The True Story of Mothers with Learning Disabilities – We CAN Do It!

1. The True Story of Mothers with Learning Disabilities – We CAN Do It! Linking Lives of Mothers with Intellectual Disabilities, informed by Narrative Therapy Dr Iiris Kleinberg Dr Kate Theodore Dr Roman Raczka Clinical Psychology, Hammersmith & Fulham Learning Disability Service • Method: Four out of six mothers with intellectual disabilities we approached chose to take part. The four mothers were all known to the community team; they ranged in age from 21 – 38 years old, and had a total of 10 children (aged between 18 months and 18 years old) between them. Three of the mothers were living with their children, and one was not. • Initially, individual interviews with each took place, following an outsider witness structure. Mothers were asked about messages they wanted to share with other mothers, in particularly focusing on their values and skills. After each interview, the conversations were summarised on an accessible summary sheet, summarising the mothers’ messages, values and skills. These stories were collated into a book, to be shared with them, and with other mothers with intellectual disabilities. Following this, two of the mothers agreed to attend a further four group meetings. These sessions were guided by principles of narrative therapy, using ideas including: • ‘returning the gaze’ (White, 1995), • re-membering conversations, • talking about exceptions to problem stories, • focusing on skills, values and preferred identities, • use of an outsider witness from the multidisciplinary team. Background: Often in our clinical practice we may avoid bringing service users together to share their experiences. By meeting with service users alone, we can be isolating them from others who have similar experiences. In contrast to this, narrative therapy views identity as relational; it is created by experiences and interactions we have with others (Walther & Carey, 2009). Michael White described authenticity as the experience we have when our preferred identity claims are witnessed and reflected back by those around us (Carey & Russell, 2003). Hence linking a person’s life with other people’s lives around shared themes or values can lead to a rich description of these in the person’s life as well as a rich description of their preferred identity. Many practices in narrative therapy contribute to the process of linking lives and richly describing preferred identities, including outsider witness practices, and group and community work. This project aimed to implement some of these practices to link the lives of mothers with intellectual disabilities, who are often socially isolated (Darbyshire & Stenfert Kroese, 2012). Design: A qualitative description of the project is provided. Results: The individual outsider witness interviews leading to the development of the book, and the group sessions, were positively received by the mothers, with one of the mothers saying: ‘I’ve waited for this all my life’ referring to an opportunity to be able to meet with other mothers with intellectual disabilities and share her experiences. In addition to the accessible book, an audio-visual CD with the mothers’ messages has been produced. Figure 1: An extract from the book produced, summarising the mothers’ messages, values & skills • Conclusions: • The mothers responded particularly well to use of the outsider witness approach, and certain techniques employed (such as the outsider witness using ‘post-its’ to write down and share skills observed) were helpful in making these processes more concrete. • In our experience it has been difficult to encourage mothers with intellectual disabilities to commit to attending group sessions due to childcare commitments, and possibly out of worry of doing or saying something ‘wrong’, particularly if they have experience of childcare proceedings. Use of individual interviews and the group format therefore allowed mothers to share their experiences in a flexible way. • It was also very clear from our first telephone conversations and letters with the mothers, and the initial outsider witness meeting, that we were interested in and valued the mothers’ views, their experiences and their story; this was most likely a new experience for these mothers. • The women wanted to share their messages more widely with other mothers, and with professionals who work with them. Hence, there are further plans to share this with other organisations including the Narrative Therapy Institute, the London Parents Network, and clinical psychology training programmes. A few quotes from the mothers, from the book produced: “It’s important to have choice. Mums should not feel like because they are disabled they can’t have children. There was a woman on TV with no arms and legs bringing up her children with her feet. I watched it so many times. I got joy and excitement from watching it. I wondered ‘Is God disabled? Is that why he created disabled people? If God had a disability, what disability would he have?’” “Don’t be scared. Don’t let no man bully or hit you. Give your children good love. Children need to laugh and have fun. Be happy with what you are. Love yourself. God made you special. Be proud of who you are. You are beautiful in your heart. Have a good personality. Your children will love you for who you are. You can be a good mum. Don’t let anyone trick you. Believe you can do it. No matter you can’t read, you’ll be a good mum. A family is like a band. You need to do things together.” • Acknowledgements: We would like to thank • All mothers who took part for sharing their inspiring stories with us • The Institute of Narrative Therapy for their thought provoking training courses • Steve Carnaby for an opportunity to reflect on initial ideas with regards to the implementation of this project • Janice Williams, Milli Miller and Pamela Kyriakides in H&F LD service for practical support with regards to the implementation of the project If you would like further information including a copy of the book and audiovisual CD produced, please contact us kate.theodore@lbhf.gov.uk Telephone: 020 8383 6464 Key References Darbyshire, L. V., & StenfertKroese, B. (2012). Psychological Well-Being and Social Support for Parents With Intellectual Disabilities: Risk Factors and Interventions. Journal of Policy and Practice in Intellectual Disabilities, 9, 40–52. Walther, S., & Carey, M. (2009). Narrative therapy, difference and possibility: inviting new becomings. Context, 106, 3-8.