Advice, support and training

Giving people the chance and choice to share their stories

We at the Social History of Learning Disabilities Research Group have undertaken or advised many projects where people with learning disabilities have told their stories about life in long stay hospitals. Most people are proud to be able to help record the history of these places, and to have their memories recorded in books, films and on websites. Of course, care needs to be taken to ensure that people consent to taking part. Best practice is to seek consent before interviewing people, getting help if necessary from people who know them well to check they have understood. Showing photos of the institution can help people make an informed decision. And to ask for consent again AFTER the interview, when they will have a better idea of what they have agreed to. Playing the tape back, or showing them the recording, before they finally consent helps to make the whole thing concrete.

We have come to regard telling one's story as a mark of citizenship. The important thing is that people have the opportunity to make their own choices about these matters. And experience tells us that people select what they will say, and will often avoid answering questions on sensitive topics like sex. Of course, some unhappy memories may be stirred by asking about times gone by, but we know of no one who has been seriously distressed. And many people who have gained in confidence by sharing their stories, good and bad, and having them publicly acknowledged.

Whether to name people is often a question that is asked. Although social science research practice is always to anonymise, in practice many of the oral historians we have worked with actually want their names to be used. As long as reasonable steps are taken to ensure that nothing that is said is libellous, or likely to lead to their being harmed in some way, we are in favour of allowing people to have their names on their stories if that is what they wish.

The SHLD Research Group offers advice, support and training in:

• inclusive research with people with learning difficulties
• learning disability history
• oral and life history work with people with learning difficulties
• writing funding applications for learning disability history projects.

We are very happy to be contacted for advice and guidance on any of these matters.

The Research Group may be commissioned to carry out training or more hands-on support.

Individual group members, including people with learning difficulties, acting as freelance consultants also offer advice, support and training. We can put you in touch with the person who is best suited to your needs.

Please contact:

Liz Tilley
Chair of the Social History of Learning Disability Research Group
School of Health, Wellbeing and Social Care
Faculty of Wellbeing, Education and Language Studies
The Open University
Milton Keynes
MK7 6AA