Carolyn Cheasman and Rachel Everard, City Lit | Dr Tom Weidig

International congress gives inspiration to act
By Carolyn Cheasman and Rachel Everard, The City Lit, London

Rachel Everard (left) and Carolyn Cheasman introducing City Lit's interiorised stammering course to an international audience at the IFA conference in Montreal.

We were lucky enough to spend two weeks in North America in the summer developing our knowledge about stammering. Our first port of call was a visit to The American Institute for Stuttering in New York where we were warmly welcomed by Catherine Montgomery and her team. We hope to tell you more about this in a future edition. After New York we moved north to Montreal for the 4th World Congress on Fluency Disorders. This international event is held every three years and brings together researchers, therapists and adults who stammer.

One of our main reasons for attending this conference was to present a paper on our unique programme for people with interiorised stammering. We incorporated a significant amount of video material as we very much wanted the 'voice of the client' to be heard. The presentation was very well received and we feel we have raised awareness of this often misunderstood aspect of stammering.

It was very pleasing to see that the self-help movement was well represented in the delegate list and a number of presentations were given by people who stammer. Keynote addresses were given by Lee Reeves from Texas, recently retired Chair of the National Stuttering Association (USA) and Jaan Pill from Canada. Michael Sugarman from California who has played a pivotal role in the American self-help movement was given an International Fluency Association award for his services to stammering. He has been instrumental in creating The Bill of Rights and Responsibilities for People who Stutter and this was launched at the Congress.

We believe it is important that British therapists are represented at events like this and it was especially good to see Frances Cook of The Michael Palin Centre for Stammering Children receive the second IFA Clinician of Distinction award for clinical services in fluency.

There were so many interesting presentations that it is hard to select what to highlight but we were particularly impressed by Taro Alexander who is the founder and artistic director of Our Time Theatre in New York. This is a theatre company for young people and adults who stammer. Company members study acting, singing, playwriting, drumming and dance with professional artists and then go on to perform in their own show. It was inspirational to watch a video showing individuals' journeys through rehearsal to opening night and to see how much their confidence grew.

We have returned to London energised and enthused about possible changes we can make to our programme.

We would like to thank the BSA for helping to support our visit.

Can we measure the cost of stammering?
By Dr. Tom Weidig

There were over hundred presentations and posters at the conference, so my choice below is restricted and a reflection of my own interests.

One interesting idea that came from the workshop: 'How consumer associations can support researchers and research into stuttering' was a cost study of the impact of stuttering to society. For example, such a study could make the argument in a grant application that this disorder is worthy of study, not just because of the human cost to individuals who experience it, but also because of the larger cost to society due to lost or under employment, productivity, etc. The representatives agreed to pursue this idea further after the workshop.

Other issues involved funding, lobbying and the BSA vacation scholarship. Different countries have different ways of funding charities and influencing government decisions. A mailing list or web page could keep people informed about various ways of fundraising. BSA explained our vacation scholarship scheme to encourage undergraduates to pursue a career in stuttering research or therapy. The Danish association were keen to organise a similar scheme.

Brain research

I was keen to attend all research talks and posters on brain research, and discuss them with the researchers.

Dr. Mori from Japan used a new and very promising brain scanning technology called Infra-Red Spectroscopy that uses light waves to study the brains of children. He claimed to have found a stutterer-typical bilateral activation of speech in disfluent children, which suggests that the brains of children who are disfluent are already fundamentally different to normal children.

Professor Luc de Nil discussed the last thirty years of research, saying that the knowledge of genetic influence on stuttering was the most important discovery.

Katrin Neuman from the University of Frankfurt claimed to have found convincing evidence for a right-brain mechanism that compensates for an under-activation in the left-brain. She said that such a finding is consistent with the Lancet study by Sommer et al (2002) on a neuro-anatomical abnormality in the left-brain of people who stammer.

Dr. Tom Weidig established the BSA research sub-committee.

From the Winter 2003 edition of Speaking Out

See also:
3rd World Congress on Fluency Disorders, 2000