A Celebration of Aphasia Research at Mary Law Lecture 2010

In response to her own experience as a person with Aphasia, Diana Law started the charity which was formally registered with the Charity Commission in 1980 as ADA - ‘Action for Dysphasic Adults’.

Diana was a stroke survivor. Through sheer determination and courage, and with support from her family and friends, Diana slowly and painfully learned to walk again. She also regained a handful of words, facial expressions and gestures which enabled her, for the remainder of her life, to communicate and, through the charity, to have huge influence for the benefit of people with Aphasia.

Today, 30 years on, we are most commonly known by the name ‘Speakability’ but we remain true to the philosophy and values of Diana Law. We have an empathic, holistic approach to the services and empowering support that we offer. People with Aphasia are fully involved in the work of the charity – as Staff, as Volunteers, as Group Members, and as Trustees.

This year, our guest lecturer was Professor Chris Code. Chris has had a long and happy association with Speakability. As an employee of the charity in the role of Regional Development Officer, he helped to start a number of peer-led and self-sustaining Speakability Self-Help Groups. In more recent years, he has continued his support in the role of Professional Advisor to the charity. We were delighted that Chris was able to talk about the research projects that he has undertaken and, in particular, those in which Speakability Group Members have played a vital and active role.

Far too often, people receiving services are denied the chance to influence how they are delivered. Speakability has always played an important role as the ‘voice’ of people with Aphasia (however caused). So, in supporting Chris and the work he described to his audience during the evening, we were, as ever, delivering that hope and inspiration so characteristic of our founder, Diana Law.

We would also like to pay tribute to the supporters who made this Lecture possible, in particular, The Tavistock Trust for Aphasia, Piers Meadows Recruitment and Psychology Press. We are also grateful to the staff at Mary Sumner House and our excellent hospitality volunteers, Rebecca Pickering and Georgia Craddock who were ably assisted by Paula Leslie and Lindsey Coleman from Speakability.

Professor Code introduced the lecture by paying tribute to the dedication and commitment of the Group Development team at Action for Dysphasic Adults/Speakability. He outlined the essential features of a self-help group – the basis of the model (Wilson, 1995) which ADA/Speakability would adopt in future years and which remains in place to this day.

Self-Help Groups are not therapy-led conversation groups. Members of the group come together because they share a common difficult experience in their lives. Members own and run the group and those attending benefit from its activities. There is some degree of structure and organisation (essential if the group is to be sustained for a number of years) and members pay subscriptions or contributions but no fees.

Professor Code discussed a number of studies which he had overseen and in which Speakability Group Members had participated and contributed.

1. Study to determine the profile of membership of Self-Help Groups in England, examining the membership in terms of age, Aphasia severity, physical state, socio-economic grouping and group roles.

2. National survey in 2003 to assess changes in the services provided by the NHS for Aphasia since 1993.

3. Usefulness of increasing awareness and knowledge of Aphasia and methods of targeting awareness raising activity to effect change.

4. The shopping habits and experiences of Aphasic shoppers.

5. Future opportunities for Aphasia recovery - research and development of new therapies.

6. Improving Access & reducing communication barriers for people with Aphasia in the future.

Full details of these studies are available to download here. Copyright of this material is retained by Professor Chris Code and should not be used without his consent.

At the end of the Lecture, we were delighted to hear the Duchess of Bedford talking warmly about the support that she and her late husband (who had post-stroke Aphasia) received from ADA/Speakability. The presentation of the 2010 Robin Tavistock Award for Aphasia was made to Professor Code in recognition of the wonderful contribution that he has made to the field of Aphasia research and public awareness during his career. All associated with Speakability couldn’t agree more.