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World Congress 2019 through Jurjen’s eyes

Updated: Nov 20, 2022

Hi everybody!

We are now more than a week after the World Congress for people who stutter, which took place in Iceland. And oh man, what was it a great experience! Not only the amazing location with the fairy-tale-like surroundings but also the great organization made it to such a success. I will guide you during this article through my experience.

It was the first time for me to go to a World Congress for people who stutter, and I was not sure about what to expect. I have only been to a congress in Cardiff and a youth exchange for people who stutter in Europe, last year. So, for me, this was again a new experience. However, I will already admit that I had the same warm feeling as during the other events that were occupied by an army of people who stutter. This has to do with the fact that it is easy to connect with people who understand you with something that influenced your life in some way.

But let me go back a bit to recap in chronological order about what has happened in Iceland from start to end. The first stop was at the Dutch airport, from where I flew to Keflavik. There were already 3 Dutch guys at the airport and also on the same plane, who were going to the congress as well. From these, I knew already 2 guys from earlier stutter adventures. After arriving at Keflavik, I traveled together with Marc to Reykjavik. There we met with Satu in the evening. In the night I also met one of my old Lithuanian housemates from a year I studied in Ghent, who was there also by ‘coincidence’, but that is another story.

Iceland gave me a little jetlag feeling on the first night in Reykjavik because we had 2 hours difference with the Netherlands and the Sun was too stubborn and didn’t want to set. This was at 1.00 a.m.:

Sun played ping-pong with the horizon because it came already back up after touching the horizon.

After a short night at the hostel, Marc and I explored Reykjavik until 15.00, before we had a bus to Hveragerði, where the congress took place. I am still struggling with pronouncing the name of the place, but I promise that I will know how to say it correctly with the next congress in Iceland.

B.t.w., Hveragerði is a very small place. So, I guess that in one day we increased the percentage of people who stutter from 1% to 20%. The locals who didn’t know about the congress, maybe thought that there was a ‘stuttering-decease’ breakout. 😉

Entering one of the organised buses.

So, we finally arrived at the place to be: hotel Örk. During the bus trip and at the arrival I met some new people and some ‘old’ people from Cardiff’s congress last year and from the previous year’s youth exchange. After settling in our (wich includes Sybren, Marc, and Shuhei) hostel, we were ready for the opening. And jeeezzz (or ‘wajooo’ as we say in Dutch slang), there was directly the first big surprise. The president of Iceland was there to give an opening speech! I was first not sure if it was really him, so I googled ‘president of Iceland’ and compared a Wikipedia photo with the guy who stood in front of us. I can confirm, it was really him.

Guess yourself who of these four people was the president.

After the opening it was open bar. And I don’t have to explain to you how open bars work… So, let’s go to the next day!

On this day it was the moment for Stamily to shine! We gave a workshop in the morning, where we (Sybren, Satu, Marc, Lynne, and me) introduced the creation of Stamily and shared our ideas and goals with the platform, followed by an interactive part with the participants to get new fresh ideas. We were pretty satisfied with the end result because the participators were very active and came with great ideas! I will probably write about this another time.

Sybren, me, and my stutter.

After this, I went to the keynote speech from Anita. She showed us that, even when you had a difficult time as a person who stutters, you can shine in front of 161 people on a world congress with a very inspiring talk.

Anita giving her speech.

After the keynote speech, I went to a workshop about cluttering by Rutger Wilhelm (or ‘Roger’ as he wants to call himself to help the non-Dutchies with pronouncing his name). He did a great job explaining us the difference between stuttering and cluttering. We were challenged with an interactive quiz, where the winner won a free book about cluttering, written by him and a speech therapist who was there as well (correct me if I am wrong!).

Rutger’s workshop was followed by Sybren’s presentation about his past, where he was bullied with his stutter. He told us how he uses his stutter now as a mirror. I know Sybren now for one year and we had already quite a few adventures and good conversations, but he still surprises me every time about how he dealt and still deals with his stutter. He is an example for many (including me 😉)!

The afternoon was reserved for optional activities and I took together with a few others the cave tour! We went to a place where Icelandic people used to live in a cave, followed by a hike through a lava tube. We walked a long time, but after coming out of the cave we heard that we only crossed around 300 meters above ground…

Entering a lava tube.

In the night we had a performance by a singer who sang the songs we chose. Great fun!

Koen in his best mood and a Japanese guy waving with a Dutch flag. Perfect.

Day three was a day focused on one thing: getting amazed by the nature of Iceland. We did the golden circle tour. It was my 2nd time doing the tour, but the nature impressed me again. With the waterfall of Gullfoss as same highlight as last time. (Seriously Netherlands, why are you so flat and can’t you just take over a few mountains and waterfalls…)

Inception picture at Gullfoss.

In the evening we played football and chilled-out in the swimming pool and sauna, heated up by the ground underneath (we waited for a volcano outburst to get it really hot in the sauna, but we were unlucky).

Checking out the Icelandic football fields.

Day four was again a day full of workshops! In the morning I went to talk by Erik about how stuttering is portraited in movies. He showed us for example that it could vary from cruel deaths of people (due to their stutter) to people who lost their stutter forever by being angry on somebody. Crazy stuff. He is planning to continue his work. So, I hope he can write something for Stamily in the future! (Yes Erik, if you read this, this is a new invitation/reminder)

After this, I went to a talk about the medical treatment of stuttering, given by a researcher who stutters himself. This was the first time I heard about research about the mythical stuttering pill. Of course, there is no real stutter pill, but there are certain ways to change your hormonal behavior with medication. For example, it is possible to change your dopamine levels, which might influence your stuttering behavior. Note that we are far from a real stutter pill because there are many (short-or long-term) side-effects involved and not everything works as well for everybody. So, don’t rush to get medication from your doctor… But it was an interesting talk and I am very curious about how he and his colleague’s research will continue.

Next was a keynote speech from Johanna Einarsdottir. She spoke about the development of stuttering with children and how at an Iceland school a treatment study of stuttering was done. The study was for me (as a scientist) hard to take very seriously because it was only done with small samples, but I admire the work to find methods to help children from a young age. I also went to a talk about the involvement of parents and their children who stutter. During this presentation we got examples of how and why parents are involved and what parents can do.

This was a long day full of food for thought and the lack of sleep from the last few nights were starting to play a role in my concentration. So, I needed some evening activity without too much thinking! Luckily there was a Gala Dinner in a traditional Viking longhouse planned in the evening! I want to say ‘what happened there stays there’, but let me just share some photos to give you an idea:

Before the dancing started.

There was some Viking action involved.

Group photo with youth exchange people.

The next and last day started a bit later for me. I wanted to sleep an hour longer and had to make some preparations for my next trip to Scotland. So, I re-joined the congress after the break with the keynote speech from Nina G. She is a (stuttering) comedian and also performed during the Gala dinner. I can tell you; she is funny. Besides that, she shared a great message to all of us by using the iceberg analogy (you see from the iceberg what is above the water, but don’t see the big part under the water). With her talk, she demonstrated that you can shape your own iceberg, but left us with the challenge of how to…

After this I did my laundry (I know not very important to tell you, but that explains why I missed the next round of workshops…). Then I joined at the last part of speaking circles from Satu and Anita. I did this workshop already last year at the youth exchange, but we are planning to give similar workshops in the Netherlands. So, it was good to see it again. I can explain you in short, if you are not familiar with it. Speaking circles is a method where you stand in front of a group, where you are (sometimes) silent for a minute or two and then talk about whatever you want to talk about. The audience gives feedback on your performance, focused on how you stood there and your behavior (not your story, so you can talk sh*t if you want). Only positive feedback is allowed. This last thing sounds maybe a bit strange, but it gives everybody always a positive boost and confidence. (Or at least, that is what my ego tells me 😉) However, it was a little bit different at the world congress, due to time and space constraints. Now there was no moment of silence involved and we stayed in one big group. There was one funny comment. Somebody said in the end that it was hard to give positive feedback. This maybe sounds a bit rude, but I like the honesty. He perfectly demonstrated how we humans are often more focused to search for flaws instead of the positive sides of things. This connects also to other workshops where we try to look to the positive side of stuttering. So, speaking circles is for some of us also a lesson in looking at the positive side of somebody’s performance.

Now the final round of workshops took place. I went to Tom Wheeler’s presentation, who logged his stuttering for 1 year. We already spoke about it the night at the sauna and he made me (and the data scientist within me) very curious. He tracked his stuttering behavior by spending every day 3 hours on collecting data about himself and his (stutter) behavior, by filling in his own questionnaires and following his Spotify-music-moods and using other devices and apps. He showed us possible correlation between a lot of different parameters. Some interesting results came out, but it is hard to draw conclusions. It is only one person and doing objective experiments as a human on yourself is extremely hard and offers a lot of room for biases. There is space for improvement, such as collecting more objective data and involving more people. But overall, I don’t believe that many people are able to do what Tom did and his determination and effort is very inspiring. Keep up the good work, mate! Tom, if you read this: I am open for a collaboration for next world congress! 😊

We are now at the end because after this it was time for goodbyes. Some people stayed a few days longer, but I had to catch a plane the next morning to Glasgow. So, I left with the first bus to a hostel closer to the airport. Every goodbye is always hard. Definitely, when you know you maybe see some people only after 1 or more years… But I could go away with a satisfied feeling and I want to thank again everybody who participated, gave workshops, and especially who was involved in the organization! You did an amazing job.

Árni Þór Birgisson, one of the main heroes of the organization. Couldn’t find a picture with the whole team…

I can’t finish without mentioning a downside as well. Otherwise I lose my credibility. There were 26 countries, but with 197 countries in the world, we were still missing a lot of representatives from other countries. I haven’t met anybody from big countries such as China, South-Korea, France, Italy, Spain, Brazil, and only one from India and one from Japan. It was more a Nordic-European party together with North America. Of course, this makes sense when you look at the location of Iceland on the world map, but it might also have to do with the expensiveness at Iceland. Some people were able to come with scholarships, but many didn’t. Also, I guess that stutter awareness is not on the same level in all countries. So, not everybody knows about these kinds of events or is encouraged to go to it! So, don’t get me wrong, there is nobody from the organization to blame for this because they did really the best they could. I just hope that in the future we can include more people from Asia, Africa, and South America, such that nobody feels that they missed out.

There were many workshops and a lot of overlapping ones, which means I couldn’t go to all workshops/presentations/talks. So, I encourage other people who went to the conference to write about it as well, such that we get a better overview!

Next time the world congress is in Israel in 2022. I am already looking forward to it! See you then!

Þakka þér fyrir!

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