World Congress 2019 Through Anita’s eyes

It’s a beautiful day when I arrive at Keflavik airport, Iceland. 22C, a highly unusual temperature, making the trip from Keflavik to Hveragerði (it took many of us a week to pronounce it correctly, so Gerrigerri sounded good enough) even more amazing, watching the beautiful, shifting nature, covered by purple lupin flowers.

The surrounding restaurants must have met us with mixed emotions: many guests, but taking time to take orders. The program started with the membership meeting of the International Stuttering Association,
ISA. It’s always great to brainstorm with people representing national stuttering associations (NSA) from different parts of the world, as our needs are so different. Lots of interesting suggestions came forward, such as a manual on how to start an NSA, a self-help kit, ask the International Fluency Association (IFA) to help out with outreach and material, and of course fundraising. The new board consists of seven people from Europe, USA, Africa, and Australia (Asia missing, but still two available spaces, so might follow later), which is promising to hear voices from all continents. What pleases me enormously is that, not only the World Congress planning committee consists of mostly young people who found their voice at one of the European Youth Meetings, but also four out of seven people on the new ISA board are former youth meeting delegates! This so clearly shows the impact of meeting other PWS in general and the European Youth Meetings in particular.

Next on the agenda were discussions around the joint IFA/ISA/ICA World Congress in Montréal, Canada, 22-25 of June 2021 and information and voting (in favor) for the next ISA World Congress in Israel in 2020. There will also be an ISAD online conference 1-22 October and a call for papers will be sent out soon.

In the evening the 160 participants (PWS, clinicians and family members) from 26 countries had arrived and the congress was officially opened by the president of Iceland in a humorous and personal way, and had no problem with the many selfies taken with him. A while ago I was asked by Hjörleifur Ingason, a professional producer, to write lyrics to music he wrote, including the words “Talk to you”. This resulted in the song “I want to talk to you”, live sung by a professional singer, now available on Spotify and SoundCloud. Maybe there’s a new career for me somewhere.

The congress was a perfect mix of presentations and workshops. Research, therapies, presentations from NSAs about their work, people who stutter sharing experiences, people who explained stuttering and our reactions towards it and how to deal with these, people giving us tools to become a better speaker, etc. But also social activities, such as a full-day tour to see the beauty of Iceland, karaoke and of course that wonderful gala dinner. The venues were perfect, as they gave people a sense of Iceland combined with space to both work and connect.

One of the workshops that spoke to me was by Iain Wilkie – 50 million voices. Just the day before Iain heard about a man who recently asked for help with his stutter, who took his life… Raising our voices is literally lifesaving! 50 million pws of employable age have a voice. So how can we join hands and make a difference on the workplace? Once a month people from many different countries meet through a chat and discuss and plan projects to educate companies about stuttering. 50 million voices is not just a vision, it has already lots of practical results, simply by the group influencing each other and learning from other’s good practice, taking this back and get to action.

The Brittish Stuttering Association has launched their website STAMMA, and former European Youth Meeting delegates have launched STAMILY. Both websites want to influence the perspective on stuttering, from focusing away from PWS and instead change the public opinion. Stuttering is tough, but not wrong. We need understanding, not demands for fluency. And stuttering is not the end of the world, just a variety of speech. If we can change the public opinion, we can get rid of the myths and the shame and exchange that with equals rights and pride. I’m also very much looking forward to the manual for youth workers to help young PWS to reach their goals, being produced by former European Youth Meeting participants.

On the lighter side, the amazing Nina G (one of the three keynote speakers), a stand-up comedian who stutters, and Danielle Rossi, a comic artist, use their skills educating the public, with a blink in the eye (or better: tears of laughter). They show, while using their own stories, the situations PWS face every day in a way, in a way to make you understand, but also laugh, although not AT us, but WITH us. They both wrote books on stuttering and both produce funny buttons that bring pride to PWS and understanding to non-PWS.

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Nina G giving her keynote speech.

Another keynote speaker was Johanna, a highly credited Speech-Language pathologist (SLP) and researcher. She spoke about the different percentages of Children who stutter (CWS), as different ways of measuring gives different numbers. I feel both sad and upset to hear that some researchers still define stuttering by the numbers of stuttered words, as some PWS instead hide their stutter by exchanging words and being silent (covert). Is stuttering freely a bigger problem than a block that’s never ending? A person who stutters on less than 1,5 syllables is considered not stuttering? And when a child stutters less during therapy, is this because the therapy works, or because the child learns it’s doing something wrong? If we let parents be therapists, how do children feel about being monitored instead of having home as their safe space to stutter without being judged? How can we make sure parents are doing the exercises in a correct way and not too few times or too often? How can we say that it’s the child who decides, when the only thing a child wants is to please the parent, and indirectly, the SLP? Why not ask a PWS to do the interview, as those who host children and youth camps get to hear the backside of the researchers medal. And how can we, today, create a therapy that gives children 2 x 10 min quality speaking time with their parents, while hearing “STOP” or “TIME OUT” when they stutter?? I was in tears when hearing this and very pleased my highly concerned comments were both applauded and even recorded. I wish for (adult) PWS to be more included in the preparation of research and for SLPs and researchers to think outside the box and create a smorgasbord of different therapies. Talking about which…

My keynote speech was about whether we should accept our stutter or act to do something about it. Or why not both? Just because we accept our stutter, doesn’t mean we can work on our speech. It’s the combination that can make us complete. If we who stutter, clinicians and the people surrounding us would stop putting us in a box, stop telling us what to do and instead offer us a smorgasbord of things to try, (such as for example Mindfulness, NLP, yoga, massage, art etc) maybe that’s the sand that creates the pearl? It also included the importance of the stuttering community, not only as support for PWS, but also for clinicians. The presentation had a positive message that we can make a difference and was clearly an eyeopener to many clinicians who came to me afterwards and discussed ideas about therapies, children- and youth camps and invitations to speak.

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Anita giving her keynote speech.

I was so happy to listen to presenters who GET it. Who use creative ways to get a child to love to talk, and to get others to understand. To bring parents, siblings and friends inside the therapy room. I was also happy to see the booklet with the stuttering cartoon character Franky Banky, specially designed by Daniele Rossi, for the World Congress. And to not only hear Nina G, but to also read her new book Stuttering Interrupted, where she shares her stories and educates, in her authentic, humoristic and reflective way. (Fun fact: Nina G also has dyslexia but doesn’t let that stop her from writing books!)

Afbeeldingsresultaat voor franky banky
Frank Banky

Talking about books, “Stammering Pride and Prejudice”, written and presented by Patrick Campbell, Christopher Constantino and Sam Simpson, brings together empowering voices and opinions on stuttering, through narrative, art and disability theory. The book explores stuttering from a social model, aims to liberate the stuttered voice and is highly empowering to PWS. May it be on the shelf of both PWS and clinicians.

Two other workshops I like to co-host are the women’s workshop, where women share their stories (Swedish research shows the difference between men and women who stutter, both their reactions and from the people around them) and Speaking Circles, where we kick down the hurdles and find the love for speaking. Both workshops full of recognition, positiveness and so incredibly empowering. The note I received after these workshops “You have enriched not only my life, but it is passed on to the children I teach” is the very reason why I, and so many others, dedicate our lives to create a world where people GET IT and to pave the way for those who still struggle. This note concluded the whole World Congress, the whole stuttering community, and the reason why I’m still doing this, despite everything. This note is priceless, to be saved for rainy days… <3

There’s so much more to say about the congress and the venue, the workshops and presentations, but the most important thing with these international meetings is what happens in between the program activities. The connections, the new ideas, give and receive empowerment, exchange well and malpractice, create new projects together, gathering knowledge to take back to our national stuttering associations and practices, share stories, tears and laughter, and to all be on the same level, where there’s no difference being a PWS, a clinician or a family member. All getting wet by the waterfall, all singing and dancing together, all touched by the braveness of those who spoke at the open mike. As we’re all there for the same reason: to connect and create a better world for PWS. Now that we’re home again, let’s keep the Iceland experience alive through the Stutter Social video chats, the FB group, but also through sharing the presentations and workshops with the many readers of the ISAD online conference (isad.isastutter.org).

World Congress 2019 Through Anita’s eyes

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