Experience of a PWS-heaven where everybody stutters – Jurjen de Jong

About the Author:  My name is Jurjen de Jong. I am 25 years old and come originally from the Netherlands, but lived in Belgium and Sweden. I have had a stutter since I was seven. I worried a lot about it for a long time, but the worry is much less lately. This is due to my attempt to step out of my comfort zone. I experience now more calmness in situations I always had much problems with before. Besides, I noted that I like to hang out and talk with other people who stutter (PWS), because we all share a similar problem but in another way. So, I believe we can inspire each other.

During the summer I was on a stuttering camp in Levice (Northern-Italy) with people who stutter from all over Europe. Here we could speak our minds freely about stuttering and other (related) stuff, without caring about our stuttering, because stuttering was the norm. Directly after the camp I wrote this blog, where I spoke directly from my mind about this amazing experience.


People who know me, know that I like writing, because that gives me the freedom to say what I want to say and speak my mind 100% freely. I usually write about scientific/historical facts, but this time I step out of my comfort zone and will try to express my thoughts and feelings.

Last summer I was at a camp for 7 days in Levice in the mountains in Northern-Italy. This camp consisted of people who stutter (a.k.a. PWS) from all over Europe. Before I left, my friends and family back home wondered what the hell I was going to do on a ‘stuttercamp’? I had reactions “Dude, you barely stutter, why do you go?” or “Nice that you can use your little stuttering to go on a holiday with sponsorship.”. Let me be honest: I didn’t know the day before I left where I was going to. I even thought that I was going to Ceva almost until the day I left…

Now I have the answer to the question why I went. I went to a ‘stuttercamp’ to come together with pws, but not to solve our problem with stuttering, but to create an imaginary world where stuttering is the norm. Sounds strange, right? For me this was very special, because since the moment I realized as a kid that I had a stutter, I was always aware of the possibility to start blocking instead of just saying the words the way I wanted, which obviously influenced my life. I admit that I am much more confident about my speech and have much more fluent periods than when I was younger, but the thoughts are always there and will probably never totally fade away.

You might wonder: aren’t PWS all just shy/quiet people? No, they are not. From day one I personally had a direct feeling of chemistry with many participants. Not only because we all share our problem with fluent speech (in our own ways), but also because PWS seem all to be very open-minded, sensitive – which is in my eyes an advantage – and interested in human internal growth. Maybe the group was biased, because not every PWS goes on a camp with so many strangers, but still, it was amazing to observe and experience how everybody developed and became very comfortable with each other in only 7 days. We shared our values in life, feelings, thoughts, cultures, strange habits, inspiring life-events during the breaks and workshops which were given by other PWS, and most importantly: spoke our minds freely. Only the cooks were non-PWS, but admitted that they started to stutter after the week (maybe they said this because they wanted to be ‘officially’ part of our awesome PWS-community).

Besides the serious stuff, we had lots of fun, stepped out of our comfort zones by performing on stage, played games, threw some parties, danced, ordered cock-cock-cock-tails, watched many world-cup matches (thanks guys for all the Belgium-support), and sometimes forgot to sleep.

The next question is: how is this going to help me in the fluent-world? I don’t know yet. Let’s hope that I can start to go further with don’t give a sh*t anymore and help the stutter community and PWS that were not on the camp to expand their comfort zones as well.

Oh yeah, I have also now over 40 new friends from all over Europe. I don’t know how many times I already said thank you (where stuttering on the words doesn’t count), but again: thanks all for being great!

For all the fluent people who came to this point of reading my text, I have an advice: if you want to become a better listener -> find some more stuttering friends.

Group photo of the amazing group or I prefer to call it a team!

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Comments

Experience of a PWS-heaven where everybody stutters – Jurjen de Jong — 37 Comments

  1. “For all the fluent people who came to this point of reading my text, I have an advice: if you want to become a better listener -> find some more stuttering friends.” This is great advice!

    I enjoyed reading about your experiences at the stuttercamp, Jurjen. It brought back many fond memories of the first time I attended a stuttering conference. Suddenly, I realized that stuttering was the majority. What a great feeling! And a shock to go back into the fluent world after. For a while after, it felt strange NOT to hear someone stutter 🙂 I’m glad you had a great time at the camp. Hanging out with others who stutter is always my go-to advice for newcomers to the stuttering community.

  2. Hey jurjuuuuuun. Mooi stukje. It was amazing. At the camp everyone understood me and was patient with me, and I realised how misunderstood I’ve always felt outside that camp. My personality was completely different and I also realised that stuttering doesn’t have to influence communication, patience does.

  3. Hi Jurjen,

    Thank you for this paper, and for sharing your experience with us. I am very happy for you that you were able to go that camp, and learn that you are not alone and that we do not, in fact, have to hide our stuttering.

    I wish you a good Journey with going “further with don’t give a sh*t anymore and help the stutter community and PWS that were not on the camp to expand their comfort zones as well”. This point is very important; it’s up to us, who have learned that we can live with our stuttering and communicate effectively, to help those who have not yet been able to get help.

    Hanan

  4. Hi Jurjen! Thanks so much for sharing this experience with all of us. What a fun read (and I happily laughed at the “don’t give a sh*t anymore” line!). I’m wondering this – because you wrote this post “directly after the camp” experience, did some of the camp adrenaline fade away yet? I don’t know if camp adrenaline is the right word, but I hope you understand what I mean. As a clinician who does not stutter, I often help my clients discover new ways they can expand their social circle of PWS because there truly is strength in numbers. However, often times my clients will go to stuttering conferences and they will feel that adrenaline for a few days/weeks afterwards, but then it starts to fade away. Has that happened to you? And if not, how did you keep the “fire burning?” I would LOVE to read your perspective on that. All the best!

    -Erik (NJ, USA)

    • Hi Erik, thank you for your response!
      I was afraid the feeling would fade and it sometimes does, but I have still a lot of contact with the people from the camp and I regain the positive mindset by looking back at the photos and talking about this experience also with people who don’t stutter. I always notice this makes me feel more calm. Also, with people from the camp we started to work on a website to inform pws and also people who don’t stutter! I hope we can share it soon with the world.

  5. Hi Jurjen – Thank you for sharing! This stuttering camp sounds like it was an amazing experience! I really like how you explained that the camp allowed you to “create an imaginary world where stuttering is the norm.” I am a graduate student in a Speech-Language Pathology program and am currently taking a course in fluency. In our class we discuss how important it is for our clients who stutter to be involved in a community of other people who stutter. My question for you is, outside of this camp that you went to, have you had a difficult time finding and joining a group of others who stutter?

    Thank you,
    Kayla

    • Hi Kayla,
      Good to hear from you.
      I have to admit that I never really searched for pws, because I didn’t struggle with connecting with people and making friends. I never felt it was needed. Before the camp I never thought that it would be such an eye-opener to meet pws and talk about stuttering and life in general. So, this turned out to be a very pleasant surprise. We come all from different backgrounds and even countries, but seem all to have a lot in common. Also observing the process during the camp was very beautiful. All these people feel like family now.
      I now try to go to other meetings with pws, because it inspires me. I also found out that it is not hard to meet pws with our access to internet and in the NL for example we had this weekend also a meeting with pws. Again this was a great experience.

  6. Hi, Jurjen. Sounds like your stuttering camp in Levice was exciting. I’m happy for you that you are feeling comfortable with socializing and making many friends. I think your advice to “expand your comfort zone” is a good one. Will you continue to participate in stuttering camps in the future?

    • Hi there! Thank you for your reaction.
      Yes, I will for sure! I hope I can even help organizing, such that I can give back what I received from this experience.

  7. Hello Jurjen! Thank you so much for sharing about your experience! We are speech-language pathology students at the University of South Carolina, and as future clinicians we wanted to ask you a couple of questions! 1). How have your experiences at camp shaped your mindset outside the “PWS heaven?” 2). What would you say to other PWS who are afraid of going to a camp like the one you described?

    Caralee, Katie, and Carolyn

    • Hi Caralee, Katie and Carolyn!
      Thank you for your questions.
      1) It helped me more to except my stutter. As a human being we all want to feel ‘normal’ and ‘fitting’ in society. It seems that pws are more sensitive for this feeling, because stuttering sounds ‘strange’ and we have to deal with the fear in every conversation that we might block suddenly. So, by being a week and by building a community where stuttering is the norm, you, as a pws, experience being ‘normal’ by being the same exact person. So, this translates for me now also to the real world. I might stutter, but I feel less strange when a stutter comes up. It is easier to joke about it or just talk about it with people who are not familiar with it.
      2) I would first of all ask them if they can describe where this feeling of fear comes from, followed by the question if they think this is a realistic fear, considering the fact that such a camp consists of people who experience many similar things and relate very well to you. After this I would tell them what I experienced and what I see other people experience at the camp.

      I hope these questions are helpful! Good luck with your further studies.
      You can contact me for more questions!

        • Thank you so much for your responses to our questions, Jurjen! Your experience at camp sounds so incredible and seems like it would be beneficial for anyone who stutters. It’s helpful for us to have your insight as we will potentially work with PWS in the future.
          All the best,
          Carolyn, Katie, and Caralee

  8. Hello Jurjen,

    I am a current Graduate Student for Speech- Language Pathology and I am taking an advanced fluency disorders course at the University of Minnesota-Duluth. I thoroughly enjoyed reading your post and love your advice, “For all the fluent people who came to this point of reading my text, I have an advice: if you want to become a better listener -> find some more stuttering friends.” This was great and right to the point. Do you wish you would have attended this camp at an earlier age? Do you believe you would have benefitted from this, earlier such as in High School? Also, what did you say to your friends and family that wondered what the hell you were going to do on a ‘stuttercamp’? And reactions such as, “Dude, you barely stutter, why do you go?” or “Nice that you can use your little stuttering to go on a holiday with sponsorship.”. These comments seem rather insensitive to me and I am curious as to what your reactions/thoughts/feelings were? Also- what are your favorite ways to connect with PWS? Thank you for you post. I gained some great insights!

    • Hey!
      Thank you for your response and questions.
      I think it would have been great if I had attend it earlier, but on the other hand I am also happy that I did it now! I think it would have been great for me at high school, because that was the period I struggled most with my stuttering and felt most lonely by being a pws.
      Yes, these reactions were made by friends who like to joke with me (and I with them 😉 ). This was meant in a funny way, because I couldn’t explain to them where I was actually heading to. Afterwards I told them everything and they were jealous that they didn’t stutter and couldn’t have meaningful conversations about deeper subjects in life and spending a week in an amazing place with lovely people.
      My favorite ways to connect with pws is by talking in real life and talking about feelings and deeper stuff where you don’t talk about everyday. This is not only for pws, but also for non-pws.
      I am happy to hear you liked my post and gained insights! 🙂
      Contact me for more information!

  9. Jurjen, I really enjoyed reading about your experience at stuttercamp. As an SLP graduate student, I am curious to know what to say to persuade a client who is timid and scared of discussing their stutter with others (including others who stutter)? Also, have you found it to be difficult to join other support groups aside from the stuttercamp? If so, why?

    • Hi, thank you for your comment and question!
      I like to try let people think about where their fear comes from. Most fears are unrealistic, but you have to know and understand yourself, before you really become aware. As a pws it is important to understand that ignorance and unawareness are the reasons people react weird to you. So, best is to talk about and explain them! You help yourself and the person who listens.
      In in the Netherlands it is not difficult, you just have to use google haha. I didn’t really do this, until I met pws in the NL 9 months ago. This opened up a world that was not hidden, but I never looked for it.

  10. Hi Jurjen, I really enjoyed this paper you wrote on a part of your stuttering experience! I am a second year speech language pathology student and had a few questions! How were you able to get connected with the stuttercamp, and was it difficult for you to find ways to get connected to the community? Also, how did the experience of the cooks beginning to stutter at the camp influence your personal experience with stuttering, and have you seen similar things happen in other areas where the community comes together? I really enjoyed reading about your experience!

    • Hi Riley,
      Thank you for your comment and questions.
      It was not difficult, but I never really looked for it.
      I didn’t mean that they really started to stutter, but they told us that they had the feeling that they started to when they got home the other years. I guess it was also to joke a little with us.
      I am happy that you enjoyed it 🙂

  11. Hi Jurjen, thank you for sharing your experiences with us! Like many others, I’m a graduate student studying fluency right now. You commented that fluent people who want to become better listeners should find some stuttering friends. This may seem like a simply or silly question, but where/how do you recommend doing that? As a 26 year old I struggle to remember anyone I grew up with or went to college with ever stuttering, but it could have just been me not noticing or paying enough attention. I imagine you and your fellow campers had an amazing time together not having to think twice about speaking or being heard. How do you think your camp experience will carry over into your regular life?

    • Hi there! Thanks for your comment.
      I just wanted to say with this that listening to pws very carefully helps the listener to become a better listener, because you need sometimes a bit more time. However, there are many ways to become a better listener ofcourse. This is just one of them!
      1% of the people stutters, so there are many around, but a lot of them hide it or avoid situation where they will stutter.. I hope I can inspire other pws to not hide at all and be open about it!
      In my own life I notice that I care less about situation that I will stutter, which is really helpful as I want to become a scientist, which has a lot of communication involved.

  12. Hi Jurjen,
    Thank you for sharing your wonderful summer experience! I am an SLP grad student and I am contemplating volunteering at a stuttering camp next summer. Your essay has encouraged me to most definitely apply. How amazing that a week long camp could leave you with such a sense of calmness and increased self-confidence, to the point that you state your stutter doesn’t bother you as much anymore. Is this the first time that you have experienced this type of calmness? If not, what precipitated the feeling before?
    Thanks for sharing!
    Anna Park

    • Hi Anna,
      I am happy that you liked reading this.
      I guess it also has to do with growing up, because I struggled most in teenage life. It feels the calmness comes with the years, but it now made a bigger jump forward by going to this camp and being involved in the stutter community.

  13. Hi Jurjen! I am a student at the University of Minnesota Duluth studying to be a speech language pathologist. I am currently taking an advanced fluency disorders course. It was great to read about your experience as a PWS as well as your camp experience! You gave me some good insight as a future SLP that has limited experience with PWS. I was wondering if you think you would have benefitted from a camp like this when you were younger and struggling more with your stutter? Do you think it would have helped or maybe have been too big of an “obstacle” for you at a younger age? Also, do you think these types of camps are beneficial for everyone who stutters?

    Thank you for sharing your experience!
    Have the best day.

    Riley

    • Hi Riley,
      It would have helped me for sure at younger age. First of all, to not feel alone in my situation as a pws. I was always an open-minded kid and could talk very well about my thoughts and feelings, but I couldn’t find the confidence to accept my stuttering. So, I think it would have helped me in many ways as a younger person.
      I think that it is helpful for every pws. On the camp almost everybody changed in some way, which was beautiful to observe.
      Thank you for your comment. I hope I helped you a bit with my answer.

  14. Hi Jurjen! I am a graduate student pursuing a masters in speech pathology. I really enjoyed reading your account of summer camp. One thing struck me, your friends/family questioned your desire to attend a stuttering camp because you “hardly stuttered”. This brings up an interesting point. Is there an heirarchy of perceived severity that trickles through to social perceptions? Meaning, because you are perceived by society to have a mild stutter, does that make you more socially acceptable than someone with a severe stutter? Does that minimize your feelings of insecurity and inadequacy? I certainly hope not but I have a feeling that is not the way the world works. I would be interested to hear about difference of experiences between you and one of your more significantly affected peers. Thank you for the thoughtful reflection on your time at camp.

    Best,
    Virginia

    • Hi Virginia,
      This is a very good comment.
      I think it is easier for non-pws to listen to someone who mildly stutters or sounds more confident about it, then someone who blocks a lot and needs a lot of time to finish his/her words. I think that doesn’t change if you will be socially acceptable. This has more to do with how you look at yourself. I know pws who stutter a lot and it influences their lifes, because they start making choices because of their stuttering, which they wouldn’t make if they didn’t stutter.
      It sometimes seems that the biggest bully is your own mind.
      To make it more clear: I stutter, but my friends call me very social. So, they accept me the same as their fluent friends, but if I would hide myself and wouldn’t talk at all, because my mind tells me that I am not worth it, my friends would think I would be less social.
      So, it is more how you deal with the situation. However, it is true that it is harder to deal with it if your stutter is worse of course.. Which becomes a cycle, because you will be more nervous to communicate, which makes your stutter more worse etc..
      I hope you get my answer and that it will be helpful!

  15. Hi! I love how this story shows the community for PWS and how much more comfortable people feel when they are with people who truly understand them. Do you ever find that as a person with a mild stutter people doubt it or question your stutter? I really liked what you shared about PWS being more open-minded, if only everyone were that way. Also your advice at the end is awesome, I hope to make more friends that stutter!

  16. Jurjen,

    Thank you so much for sharing your story about your camp- you are teaching all of us so much by giving a perspective from a PWS position. I saw in a comment above that you connect with other PWS through the internet. As a future speech therapist, I would love to hear about websites or groups that you would recommend so I can share these resources with future clients.

    Thank you!
    Emily

  17. Jurjen,
    Thank you for sharing this story. As a future speech therapist its good to know how impactful groups like this could be for PWS and maybe other speech disorders.
    Madison

  18. Hi Juejen,
    I am studying speech pathology and we are learning about stutters right now. This story that you shared was really great and I was just wondering if you have gained more confidence in day to day life after this camp.
    Thank you!
    Jenna

  19. Hello Juejen,
    I enjoyed your story about your time at the camp, I found your question about how it would help you in the real world interesting because I feel like it might help you feel more comfortable with your stutter. Has it made you more comfortable with communicating?

  20. Hi Juejen,

    I am an undergraduate speech student taking an intro to communication disorders class. When talking about the wide range of stutters I was surprised with the range of severity and the many different ways a person can stutter. i noticed how people bring up that your stutter is so mild why would you go to this camp. Do you feel that those with mild stutters are less excepted? How do you usually handle these situations where people make these comments about how mild your stutter is?
    Thank you for sharing!

    Sam

  21. Hello Juejen,
    I think its great that there’s a camp for PWS and that you can make friends and really feel comfortable in who you are. I wish it was like that in day to day life when not at camps. That people are more accepting of those who stutter so they were more comfortable in their day to day life. Thank your for sharing your experience !

  22. Hoi Jurjen

    What a wild bunch of people in one picture, all there for one reason: stuttering. Sharing stories, beers, wisdom, walks, tears, food, and ways of dealing with situations, dancing, stargazing, laughing with each other instead of at each other and tearing that stuttering beast apart, turning it into a small organ monkey. 😉 And the best part is what comes after, the change people make, the project you started that keep the spirit alive engaging so many, and that will make such a difference.

    Keep talking!

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