The post-World Congress-for-PWS black hole: a warned woman

borghuisAbout the author: Maartje Borghuis was born and raised in the south of the Netherlands, in a family where stuttering wasn’t uncommon. When stuttering became a paralyzing speech disorder in college, she took matters into her own hands and she found a therapy that actually helped her move on from all the negative thoughts. Around that time, she came in contact with the Dutch Stuttering Association Demosthenes and started a youth department for young adults between 18 and 30, a group that needs a lot of attention. From 2003 till 2009, she organised a lot of events and weekends for these young people. In 2003, she also took part in an ELSA meeting, where young people learn to get a voice for people who stutter in Europe. In the meantime, she finished college with a dentist degree in 2007 and since then she is a fulltime dentist and also took a place on the board of the National Stuttering Association Demosthenes in 2008. Maartje has been in two short films about stuttering, countless interviews for newspapers and magazines and a few radio broadcasts, to make the Netherlands more aware of stuttering. After participating in the ISA World congress for PWS in Croatia in 2007, Maartje only wanted to do more for the community of PWS worldwide.  She chaired the 2013 World Congress for People Who Stutter in The Netherlands.

People warned me. They told me, several times. Watch out for the black hole. Beware.

Last year, around this time, I was writing my contribution for the ISAD online conference of 2012. The title was: ‘Things to do before you’re 30’. I wrote about life as a woman who’s almost turning 30, my experience with my stutter, my problems, challenges and opportunities. And about organizing a world congress for people who stutter. On the eve of my 31st birthday, I’m writing this.

In my twenties, I always seemed to get in a situation and think: Why did I sign up for this? In all my enthusiasm I said yes to just about anything that came along in terms of organizing anything to do with stuttering. I was finally getting to terms with my own stutter so, being social and responsible and all, I wanted to give back to the world and help others as well, in any way I could. This urge to ‘help’ turned into chairing the 10th World Congress for People who Stutter in the Netherlands. And even at the old and wise age of 30, I can’t count the times I thought: Why did I sign up for this?

Nobody can prepare you for the work you have to do if you’re determined to make it a success. Since every congress in every country is organized in a completely different way in different times with different funding and different possibilities, you need to invent the wheel again. I had come a long way with my stutter already (I couldn’t even make a phone call ten years earlier), I had learned a lot about myself and what I could do in terms of speech. Perfecting this particular wheel meant taking all those lessons to challenge myself in a whole new way. I learned a lot, and picked up some good new lessons about stuttering along the way.

In my daily life I can be pretty bossy. I’m a dentist, I work alone with an assistant (who has to endure my devilish bossiness), I can work however I please and nobody tells me what to do and when to do it. So pretty much a pig-headed, know-it-all, I’ll-do-it-my-way dentist, just as they all are. This does not make for a great chair. When organizing such an event as a World Congress, you need to be a bit more flexible and you need to work with volunteers who have ideas as well. Lesson number 1: listen more. I considered myself a good listener, but one can always improve. If you want to reach a goal, you need to listen to what people want and need. The tricky part for me was to make all the difficult decisions, but all in all, that turned out ok when keeping in mind what the participants wanted.

The feeling of togetherness that was present at my first World Congress for PWS was something I wanted to recreate. The program is important, but the social time is equally crucial. Lesson number 2: trust yourself and your instinct. The plan was to do something that hadn’t been done before: to get PWS, SLP’s and scientists in the same room. They can learn from each other and thereby speed up the process of moving forward. The congress was held in a small congress centre, which meant we had the place to ourselves. 275 People thrown together for four days, what an amazing experience. For most of them, it was a new one as well. The program was designed so everyone could enjoy every session. Science was made understandable, workshops were useful for all and speakers appealed to the whole audience. It was a challenge to make it interesting for everyone involved, but the interaction between all participants during and after the official program was something to witness…

How does one fill a program? One begins with the keynote speakers. Lesson number 3: be bold. I have to say, as humbly as I can, this is one thing I take credit for.  My idea was to invite brilliant speakers who stutter as well. Six out of seven did. Number seven was Marie-Christine Franken, a well-respected SLP from the Netherlands. She presented brand new research about therapy for children, not to be missed; a great speech. But this time she was the outsider, the abnormal one. The others were people who stutter(ed), some famous, some infamous. Who could imagine David Mitchell would accept my invitation to come and speak? Facing deadlines, finalizing his speech on the plane, this writer had such an amazing story to tell. And he wondered why I asked him! Then there was David Shapiro, who brought tears to many eyes (including mine) during his speech. Michael O’Shea, whose personal story was even better than I remembered. His wife Monica joined his speech, nervous as anyone can be, but she did it! The always hardworking Anita Blom, who never tires when it comes to contribute to the stuttering community. Tears were present as well. Shinji Ito was responsible for the first World Congress for PWS when I was 4 years old. Without him, this whole thing might have never happened. The modest Katherine Preston charmed the pants of the audience. She said no when I first asked, but both of us were so happy she came all the way to the Netherlands. I never thought I could get this group together, but I didn’t give up and it somehow worked out. Every single story was important, inspirational and useful.

But, seven keynotes do not make a congress, so you need a lot more. And thank god for our participants and volunteers. The participants made sure the rest of the program was filled with interesting lectures, a special film festival and workshops. The volunteers made sure the program was well put together and they did a lot more. For our 275 participants from 37 different countries, they helped organize the social activity to the National Park Hoge Veluwe, the gala dinner, the karaoke, the sponsors, the onsite hands, the website, the bike rental, the students, the information booth, the souvenirs, and many many more things. Lesson number 4: be thankful. There are people who let you down, who disappoint or disappear in times of need, but there are always those who do help. Without them, this congress would have been a disaster.

Speaking about disasters: you need a professional. At some point, you need someone who has done this more than once. Because of funding, we were legally obliged to hire Bea Smink, our go-to-woman for all things official. She handled registration, payments and for example helped with VISA applications. Lesson number 5: be realistic. Even when you try your hardest, some things can’t be learned in a few months. In hindsight, we were so happy we had to hire Bea. She gave advice we had never even thought of asking for, invaluable.

When it came to finances, there lay a big challenge ahead. The idea formed in 2007, the crisis hit in 2009, things seemed ok in 2010, the congress was ‘won’ in 2011, the crisis continued in 2012 and I slept very little at the beginning of 2013. You can have all the good intentions in the world, without funds, there is no congress. To have this responsibility hanging over your head is no fun whatsoever. I knew we had a great program, great speakers, a great opportunity to let the Netherlands and the world know about stuttering, but the commercial interest was very low. There is just no money in stuttering. It can’t be fixed with a pill (so far), it’s not sexy, it’s not easy to understand, it’s no fun. Lesson number 6: be optimistic. Giving in to pessimism just wasn’t an option. It took many months, but in the end, we raised enough funds to cover the costs, just enough. I began sleeping again somewhere in April.

And if you think money was my only worry, think again! I needed to do the first speech, to officially open the congress. Damn, I never do speeches, certainly not in English, for nearly 300 people. Do I have anything meaningful to say and can I say it in a non-sleep-inducing manner? Lesson number 7: be brave. I was a member of Toastmasters once, an international organization for public speaking. I did the first speech exercise, I got the Toastmasters pin and I quit. It just wasn’t my thing. I mean, I like to talk, but to make public speaking a hobby? So to do this without any training requires some guts, or balls, or both. So I did it, and it turned out to be more than ok. Then came the daily announcements, introducing the keynotes, updates during lunch in a full restaurant, tour-guiding, instructions on a full bus, thanking everyone at the closing ceremony… I think I blew past brave.

A little bravery was also needed during my time on air. A year before the congress, I made contact with the biggest radio station in the country. One particular DJ had made a ‘funny’ joke about ‘helping’ someone who stutters (I thought it was funny…), many people thought it was really wrong. I asked him if he was interested in actually helping PWS and to my surprise, he was. I was on national radio about five times, he got us lots of attention, press, a free cover band for the gala diner and a famous Dutch singer visited the congress. Lesson number 8: be open minded. I could’ve been very insulted by his joke. I could’ve written him a very nasty email calling him names and saying it was disgusting what he did. But, his intentions weren’t bad. It turned out he stuttered when he was younger, he actually really wanted to help, he was very enthusiastic and he made the congress extra special. People aren’t always as bad as they seem, they can surprise you.

You can also surprise yourself. For many months I looked forward to my white hole. The opposite of black. All my free time after the congress. Time for me, to do what I wanted, delicious. Happy again, relaxed, stress-free, time for friends, family, holidays etc. But they warned me. And they were right. There were still loads of emails, bills to pay, money to fight for, letters to write; and I was just so tired. In the past two months, I didn’t feel like doing anything. I wanted to be done with the congress, I didn’t sleep well, I felt useless, with nothing to do, but also wanting to do nothing, Every little problem I had in the past year was pushed forward and came popping up after the congress was over. It all hit me like a ton of bricks. I am a very optimistic person so it made me very sad. I’m a problem solver, but I couldn’t solve much. Lesson number 9: give yourself some time. I’m still working on that one J Muddling through this black hole, writing this will help me climb out, it’s a bit of trial and error.

Which brings us to Lesson number 10: you can always learn something new. Or redefine the old. In getting to terms with my stutter, I have learned some skills. Most of them had to do with my inner thoughts and how to handle them. I thought I knew me, now I know me better. I had already learned the skills I used before and during this congress, just in a different perspective.

Lesson number 1: Listen more. You can get caught up in speaking/stuttering, stop and listen.

Lesson number 2: Trust yourself and your instinct. You can do more than you usually think, trust in that.

Lesson number 3: Be bold. When you think something is impossible, it is. Just try, a lot of things and it turns out to be possible.

Lesson number 4: Be thankful. When push comes to shove: you just stutter. It’s not killing you, it’s just a way of speech. Even though it can be hard, be thankful for being alive and healthy.

Lesson number 5: Be realistic. It may be you will never get rid of your stutter. So what? It cannot be the end of the world, if you are living your life the way you want, a little stutter can never hold you back.

Lesson number 6: Be brave. Try things, new things, scary things. By pushing your limits, you will surprise yourself and feel proud.

Lesson number 7: Be optimistic. Being a pessimist will get you nowhere.

Lesson number 8: Be open minded. To people, to solutions, to possibilities, to work, to therapy, to education. All roads lead to Rome, you just need to find yours.

Lesson number 9: Give yourself some time. Any change, real change, within you requires time. Stuttering is a difficult problem to have, solving it may take time, lots of it. Don’t beat yourself up about it.

Lesson number 10: I rest my case.

Organizing this congress was a once in a lifetime event, no one ever does it twice. To be part of something like this was very special and I am very proud it was such a success. Thanks to all the people who helped, and to Richard Bourgondien (vice-chair). Without him, there would be no congress.

Hope to see you all in 2016 in California!

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The post-World Congress-for-PWS black hole: a warned woman — 12 Comments

  1. Dear Maartje,

    Thank you for another great contribution to the online conference sharing your experiences. The one of 2012 brought up some tears for me because of recognition, this one mostly made me smile because I’ve been there.

    I could write a whole story here of what we’ve been through on social, personal and financial area’s the last couple of years but I won’t. All I want you, and the rest of the world, to know is that there’s no other person I would rather have been organizing this congress with but you! We were a good team.

    Thank you for being a friend


    • Thanks Rich, I hope we’ll have a lot more experiences like these together and stuttering will probably be the thin red line running through them (London 2014, whoop whoop :)). This however has been the result of a great friendship of 12 years, I really appreciate knowing some people will always be there for someone else and we could rely on eachother during everything. We’ve made many friends along the way, worldwide, so I imagine this congress is a good starting point for our small but honoust quest to help others out there. Preferably somewhere else than Lunteren 🙂 See you soon!

  2. Maartje,
    Thank you for writing such an insightful paper. Not only did you tell us how much was involved in putting together the Congress and what you learned, you also related this beautifully to the lessons learned about stuttering.
    I remember reading your paper from last year, and remember thinking what a great writer you are.
    This year’s paper has me feeling the same – you’re a great insightful, descriptive writer who is also very honest.
    Thank you for sharing your lessons and for teaching us how persistence can get anything done.
    Pam – NY, USA

    • Hi Pam, thanks for your comments, I wish you could’ve been there to see the results of our struggle :). I hope we can meet you in 2016 in California, keep doing what your doing, I keep track of stutterrockstar from time to time, great stuff! One way or another, we all contribute to turning stuttering into a more positive thing, you as well, thanks for reading my story. If I’m ever in New York… Bye!

  3. Great insight Maartje to running such a great and involved event. Thank you also for the opportunity to virtually present

  4. WHOW what a reflection of your own experiences! Great to share this with us. And stay always a dreamer because dreams come true
    warmly Caroline & Gert
    Belgium stuttering association

  5. Ms. Borghuis,

    Thank you so much for your insightful paper. I am a speech pathology graduate student at Western Carolina University and I found that much of your advice about perseverance, optimism, being brave, and thankful directly translated to qualities one needs to make it through school as well as life. Do you ever wish that you started speech therapy earlier in life/is there a reason you did not? I know in class, under the insightful direction of our professor Dr. Shapiro we learn a lot about how stuttering can affect ones self concept, thoughts, and feelings. Do you think that if you had started earlier you would have a different self concept? Also, I had a question about your idea to do something new with getting PWS, scientists, and SLP’s together. Did you ever find a clash between all the groups working together or were people generally open and accepting to have discussions and learn from all parties involved? I know it can be easy to get caught up in looking at stuttering from a certain perspective (i.e. the SLP’s or the PWS)and ones role in that and forget about the other person’s perspective, which is why I asked such a question and wondered if it sparked a great debate or any great discussions that stood out having everyone together.

    If you could please answer these questions I would greatly appreciate it. I find your lessons and story truly inspiring and fascinating.

    I look forward to your response.


    Amelia Loewer

    • Hi Amelia,
      I did have therapy earlier in life, but in the late 80’s is just wasn’t that great. At least, here in the Netherlands. From the age of 6 to 22 I tried different things, it wasn’t until the last one that I was really making the progress I needed to get on with my life. Still, I think that’s a pretty good age and it’s not like I had a crappy childhood 🙂 You can’t rush therapy, it’s like any real change, you need to really want it and have the right mindset, otherwise it won’t ‘work’. And, it can turn out you need different things from different therapies, I did.
      Regarding the congress: we didn’t find any clashes between the groups of participants, everyone was open to the idea. Everybody has a different background but I didn’t see any problems there, as long as people are openminded. I think we mostly learned from eachother.

      Maybe we’ll meet at the ISA congress in 2016! Bye, Maartje

  6. Dear Maartje:

    Thank you for your contribution to stuttering self-help worldwide. There is a reference in the bio that precedes you paper which states that PWS between the ages of 18-30 are “a group that needs a lot of attention.” This is an opinion that I also hold strongly. I would expand even argue to expand the upper end of the age range to 35. What is your vision for this demographic of PWS?

    Keep up the great work.

    New York, NY

  7. This was really inspirational to read, you’ve overcome a lot and are doing great things for PWS. These are great lessons for everyone to keep in mind. Thanks for sharing.