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The 10th World Congress for People who Stutter 2013, Lunteren, Netherlands

Harry Dhillon, Andrew Janes, Paul Brocklehurst, Christine Simpson, Tim James Murphy | 01.06.2013

The theme of the June event, held every three years by the International Stuttering Association (ISA) was ‘Breaking taboos around stuttering’. Five attendees share their experiences:

Group at Stuttering World Congress, Lunteren

The workshop host, Harry Dhillon

Harry DhillonIt’s not often you go to another country and get mentioned in a news programme on national television the next day. My ‘crime’ was to do a workshop at the World Congress with a Dutch TV crew present. This turned out to be a fitting start to what was to become an event-filled and incredible four days. Organisers Richard Bourgondien and Maartje Borghuis worked tirelessly for two years to create an event which ran like a well-oiled machine, allowing people to learn, have fun and make friends, and which has set a high standard for future Congresses.

The venue was a secluded hotel in the Dutch countryside, which was completely taken over by people who stammer and Speech and Language Therapists. The keynote speakers were inspiring, with some leaving me teary-eyed. Workshops were based around various themes, like ‘research’, ‘personal stories’, ‘treatment’, etc., and, just like the ingredients in a good meal, the themes were sprinkled into the programme in just the right proportions. There were lots of social activities too: we got to cycle in the desert-like wilderness of the biggest national park in Holland, Hoge Veluwe, before taking in the artwork of Picasso and Van Gogh at the Kröller-Müller Museum. There was karaoke in the evenings, and a gala dinner which was held in a magnificent castle! The organisers even persuaded a famous Dutch celebrity, Miss Montreal, to sing for us.

Everyone I spoke to said they had gained an enormous amount from this Congress. For me, it helped to open doors. The workshops I ran were very well received, and as a result I gained two firm invitations to repeat my presentations and organise events overseas. One of my workshops was about King’s Speakers, my London-based Toastmasters club which is primarily for people who stammer. Many individuals approached me afterwards to talk about starting something similar in their countries. The Congress thus proved a great way to spread knowledge and to help others achieve similar success.

In the auditorium, World Congress, LunterenI considered myself very lucky to have attended. How often do we get a chance to socialise with fellow stammerers from Mauritania, Mali or Nepal? I got to realise that regardless of our different languages or cultures, we all share the common thread of stammering, which binds us together; that each one of us is following a unique and personal journey in a quest to manage our condition, and in doing so, we are helping to create pathways for others to follow. Like many others who attended, the World Congress changed my life in a beautiful way.

The first-timer, Andrew Janes

If you’ve ever been to a BSA Conference, it might help to think of the World Congress as being similar, only more so – and with multilingual conversation around the dining table. Our Dutch hosts were friendly, welcoming and superbly well-organised. The Congress featured a broad variety of presentations and workshops. Many of the best bits, though, were not the organised sessions, but the parts in between. The breaks and informal socialising offered a unique opportunity to meet others who stammered from across the world.

Foyer, World Congress, LunterenHere are some personal highlights (and just a few lowlights): being called a ‘Congress virgin’ (the joke wore a bit thin after the third time); watching the short French film My Little Brother From The Moon and being reminded of playing with my sister when we were little; people attending my workshop and not throwing rotten tomatoes; having to stop my workshop just as the discussion got really interesting because time had run out; being forced to dance the Macarena whilst sober; secretly enjoying dancing the Macarena; everyone on my table at the gala dinner eating too much first course because we hadn’t realised there was a second; Maartje, the Congress organiser, singing I Will Survive after the dinner;  making a fool of myself in the Creative Movement workshop and not caring; the high proportion of session leaders with moderate or severe stammers (I sometimes feel that people with a lot of natural or acquired fluency dominate at conferences – not here); riding a bike for the first time since 1994 and loving it; sympathising with the many allusions to perfectionism (I am a lazy perfectionist – and proud); the story of Shinji Ito, director of the Japan Stuttering Project, augmented by the wit and sparkle of his translator; being understood and understanding.

Author David Mitchell at podiumDo I recommend going to a World Congress? Definitely. Will my first one be my last? I hope not. I think I’ll start saving up for the next one now.

The researcher, Paul Brocklehurst

Lunteren was my second Congress and once again it provided an opportunity to hear speakers from a wide range of backgrounds and get a taste of current trends in the stammering world. It opened with a speech by Marie-Christine Franken, who presented an update on her research in Holland comparing the effectiveness of Lidcombe therapy to the Dutch ‘RESTART – Demands and Capacities’ therapy (which focuses on bringing the expectations placed on the child with regard to fluent speech better into line with their current abilities or skills). Specifically, Marie-Christine reported on the findings of a follow-up study which revealed that both types of therapy were associated with very similar levels of improvement in fluency in the young children who took part. I found this interesting because many clinicians in Western Europe seem reluctant to employ the Lidcombe approach – which directly rewards fluent speech and discourages dysfluency – for fear that it may cause children to conceal or repress their dysfluencies, and lead to problems later on. However, the study’s findings suggest that such fears may be unwarranted. By helping dispel such fears about Lidcombe, Marie-Christine’s presentation nicely addressed the Congress’ theme of breaking taboos about stammering.

Most of the presentations emphasised the importance of acceptance of stammering. However, a few speakers bucked this trend and described therapy approaches that are focused on reducing (or eliminating) dysfluency. Most notable among these were presentations by people who had completed the Russian ‘Arlilia’ programme – and who had apparently successfully achieved (and retained) high levels of fluency. Hopefully, one day, independent researchers will assess Arlilia’s long-term effectiveness. In particular, it would be interesting to investigate the extent to which it is effective in diminishing the more covert aspects of stammering.

A toast, at World Congress, LunterenAustralian Mark Irwin’s talk highlighted the need to identify and address all aspects of what he terms the ‘stammering syndrome’, including not only a speaker’s dysfluency, but also their associated social anxiety. Mark described how fluency-shaping techniques can sometimes degenerate into ‘safety behaviours’ that may ultimately prevent clients from fully overcoming their fear of stammering when speaking without them. Reflecting Mark’s perspective, Michael O’Shea, from Ireland, described in his presentation how The McGuire Programme had provided him with a method through which he could maintain fluency. However, it was not until he took the further step of venturing beyond the safety of the technique that he finally experienced the communicative freedom that he had always desired. Michael’s description was particularly potent to me, perhaps because it seemed to overlap substantially with my own experiences.

All in all the Congress provided a valuable update on the current perspectives on stammering, a great opportunity to catch up with old friends, and a thoroughly enjoyable week.

The Congress veteran, Christine Simpson

Christine SimpsonThe latest World Congress was a great experience for me. I enjoyed novelist and BSA patron David Mitchell’s thought-provoking keynote speech about what our stammer gives us and the way we can use it to educate the fluent majority. Author Katherine Preston, another keynote speaker, was an inspiration, showing that a noticeable stammer is no barrier to excellent public speaking.

The workshops reflected various sub-communities within the stammering community. I co-presented the Women Who Stammer workshop with three others: Anita Blom, Anja Herde and Pam Mertz (via Skype from the USA). Perhaps controversially, we decided to make it a women-only workshop. Our decision was vindicated by the positive feedback we received. One participant said she’d been to ten gatherings but had never had a chance to talk to other women in a workshop like this before. The Lesbian, Gay, Bisexual and Transgender (LGBT) workshop was a great opportunity for everyone to examine the issues around this subject.

As a vegetarian, I was well catered for (which isn’t always the case at these events) and I didn’t have to have the conversation: “No, vegetarians do not eat fish.” The UK contingent at the Congress was a select group but the ISA has elected Keith Boss, ex BSA Trustee, as its new President. Congratulations to Keith.

The ELSA member, Tim James Murphy

Tim James Murphy with Congress organiser Richard BourgondienFor me, the author Katherine Preston gave the best keynote speech of the Congress. She told her thoughtful, compelling and inspiring story of leaving the UK, and her job as a journalist, to undertake a journey of self-discovery around America, which culminated in her wonderful book Out With It.

Another highlight was Harry Dhillon’s workshops, where he was able to get people out of their comfort zones in a short space of time - by the end they were comfortable getting on stage and introducing themselves. Anita Blom and Edwin Farr, who together run the European League of Stuttering Associations (ELSA - an organisation which runs life-changing events for young people who stammer), gave a great workshop on organising groups and starting up a national organisation.

To me, the Congress was a release. A release from every block and stammered syllable that came before it; freedom from unsaid words and missed opportunities, which for years left me a prisoner in my own body. But most importantly it gave me peace within myself as I finally realised that there are many truly remarkable people out there who don’t lie down and let stammering dictate their lives, but instead stand toe-to-toe with their stammers. Heroic young people like Satu and Eeva, who, unhappy with the resources for young people in Finland, are now actively involved in running summer camps there.

What I loved about the Congress was that I got to rub shoulders with these courageous people who sing their own songs and don't worry what others think. They have found a hidden mercy within the suffering and realised that the cure to pain is within the pain. I encourage everyone who hasn’t been to a World Congress to try to go at least once in their lives - you won't be disappointed. And did I mention the parties are outrageous? We know how to party!

To listen to interviews with several of the speakers at the Congress, download a podcast from Stutter Talk at http://stuttertalk.com/category/10th-world-congress-for-people-who-stutter/

The next ISA World Congress takes place in Atlanta, Georgia in July 2016 - see 'Related links' above,.

From the Summer 2013 edition of Speaking Out, p7-8