This article was first published in “Stamposten”, the magazine for The Norwegian Association for Stuttering and Cluttering (STOLT) in February 2018. I was then working as a tram driver (and I am now retired after 39 years, 1 month and 28 days).
I don’t really stutter, but on the other hand, I have a nice “cluttering speech”. I’ve had that for years, but I wasn’t diagnosed with it until 1997–98. Most likely, this was an unknown form of speech disorder in the dark 60s. What I was diagnosed with, and got corrected, were problems pronouncing the (Norwegian) skj-, kj,- and tj-sounds correctly. Any stuttering was not mentioned, nor was cluttering speech.
I don’t remember anything more about this until about 3rd or 4th grade, when someone in my class started teasing me for my dysfluency. It eventually turned into a bullying problem, but the school didn’t understand what was going on, it was “just” general bullying that was eventually addressed. It should be said that my nemesis himself stuttered a bit, so maybe he had a need to hide it? I can’t remember him having any problems in class because of his stuttering, nor in the schoolyard (where many a fight was fought). In middle school, there were other things to “address” for bullies and others, but fluency difficulties were still unheard of. My nemesis passed away and died all by himself (from a bad heart) at the young age of thirty-something , so I guess it could be said to be karma?
But back to the cluttering speech. In high school, I (and a bunch of others) were portrayed in “Forsøksgym Funnies” by Christopher Nielsen (I was told to talk about what was closest to my heart: trams, while he drew me…). And my character stutters. But there was no bullying, but no one there knew anything about cluttering speech. It was probably not until 1997–8 that I got a push from an acquaintance and contacted the then Bredvedt Center for Speech Therapy at Rødtvedt in Oslo. After a few hours with a speech therapist there, “cluttering speech” was diagnosed. Finally, I had a diagnosis, a name for my remarkable pronunciation (or, rather, speech dysfluency). But not much came of it, apart from a handwritten note with something on it saying “co-articulation”. A little later I was invited to a meeting with some speech therapy students, and there was another clutterer! The first one I had ever met “in the wild”! And it was really spooky. When she spoke, it was just like hearing myself in a recording! I met her by chance in the city once later, and it was still just as strange. And so the years went by. There was no more speech therapy, nor any more clutterers.
Then the fateful day came when I was sitting with my morning coffee and leafing through the weekend supplement of the newspaper Verdens Gang. There was a portrait interview with some celebrity, who had overcome his stuttering with the help of the McGuire method. And: NIFS (The Norwegian Association for Stuttering and Cluttering, now STOLT) was also mentioned. It had “Cluttering speech” in the name, and I checked the website (Google is your friend!). It was as true as it was written, I signed up on the spot. Once I became a member, the organization announced that they were looking for people for the board for 2018. Given that people with cluttering speech in my eyes are as common as hen’s teeth, I raised a virtual hand in the air and announced that I “made myself available”. There was a short telephone interview with someone on the election committee, and at the annual meeting I was elected as a deputy on the board.
How does cluttering speech manifest itself in everyday life?
You are easily misunderstood, and often have to repeat things. In conversations, people sometimes get that glassy look and start answering “out of the blue”, like “Umm, five o’clock!” (or, just like “yes”, “no” and a smile). At my job as a tram driver, it’s a bit of a mix. Before, we were the ones who called out stops, and some of the names were tricky, because there are some words that seem to stop. Especially “Institutt”. Long names are also demanding, “Universitetet Blindern” and “Rikshospitalet”, as well as “Nobel-Instituttet”. We clutterers are experts at swallowing syllables and the beginning or end of words. And long words are quickly compressed to half, often without us even realizing it. Fortunately, the calling out of stops has now become automatic, but sometimes we have to talk to the passengers when there is a “deviation”. Everything from a car parked so the tram can’t get past it giving a “20 minute stop” to acute deviations due to power outages, defective trams (or buses) blocking the track, having to take other routes and the like. Then it happens that people come forwards to me and ask me what I was saying (or trying to say).
Now, I know that some trams’ loudspeaker systems are bad, but not all are, and then it must be that I have been unclear in some way even though I do my best. We also have radio communication with the traffic controller (dispatcher), and there I try to be brief. That is, to use short words and sentences (“parcel” or divide them up). But as most people, both stutterers and clutterers, know, if you are tired (“brain fog”, long day with lots of stress, or a bit of lack of sleep), then things can get confusing. In which case you just have to make the call again, or pick up the phone. So you get used to it…
As far as NIFS (STOLT) is concerned, I consider myself to be the association’s cluttering alibi (nothing less!), and have started up the local chapter in Oslo again. And there, by the way, another clutterer has appeared! And as for help with cluttering speech: Speech therapy is on my to-do list, but DAF (Delayed Audio Feedback) in the form of a (roughly) free app, works. DAF works by recording what you say and playing it back in your ear with a suitable delay, and possibly also at a different pitch. The downside is that you have to lug around headphones or earbuds, it eats up battery power, and it becomes hopeless in noisy environments (you get all sound as an echo, which is really tiring). But in one-to-one communication it works, and over time I think it can be a good tool. It is also available as a small gadget, the size of a hearing aid, but it costs a bunch of thousands of Norwegian kroner and is therefore best to get a referral from NAV (the State). However, it also works for those affected, and is much easier to deal with than a huge lump of a “smartphone” and the associated earplugs/earphones.
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Thank you so much for your sharing Ciel,
I’m very sorry that your Nemesis was someone who stutter. Cluttering is a relatively new thing for me. I wasn’t aware of it, I wasn’t aware of its existence, I was super or hyper-focused on stuttering, and all the s… around, which was… (maybe still is)… for better or worse, a bit my life story, my struggle. But since the last World Congress in Finland and after listening to you, I’ve become more curious about and about how people who stutter and those who clutter can team up to reclaim our space. A common space that’s friendly and protective of diversity. I like ropes, I don’t know if it’s because I’m Portuguese, descended in some way from navigators, but i like them. There are no discoveries or rediscoveries of New Worlds without ropes. May we, I hope we can, PWS and PWC intertwined together to form a stronger and more flexible structure to navigate the times ahead.
We are! It’s just that we Clutterers are kind of late to the party. We haven’t really found our voice yet, you could say. But we are together, as a family. Together we are stronger!😄
Ciel, I have really enjoyed reading this. My 15 yr old son is a clutterer and I’m doing my PhD on the topic. Some of the ways you describe cluttering are really useful, and much easier for the lay person to understand, such as “We clutterers are experts at swallowing syllables and the beginning or end of words. And long words are quickly compressed to half, often without us even realizing it.” Also you mention “parcel” or divide them up as a strategy, perfect.
I’m a little confused as to how you use DAF in a one to one conversation? Can you explain that more?
It can make a conversation with one person easier, if you struggle a lot with such as number of syllables per minute. Used with care, and a learning tool, to make yourself more aware of your dysfluencies, it likely has a value. But remember that the brain is incredibly plastic, and can quickly get used to the delayed feedback, and then you’re back to “square one”.
Hi Ciel,
While stuttering and cluttering are quite different, our life experiences show many similarities. Thanks for sharing the cluttering view.
Nice to know that NIFS is now STOLT, also meaning ‘proud’ (as Ylva told me). Gives a more positive perspective!
Yep. Time to stop hiding! I was inspired by the campaign a few years ago: “Embrace your stutter”, and the “Pride” movement, as in, well, gay pride, trans pride and so on, and, of course, the Stamma campaigns.
Also, our old name was wayyy too long, so I was looking at other names that are acronyms. English teems with acronyms, but not so much in Norwegian.
Finally, I had an epiphany: Just cross out the first three words in the (old) name, and the last four words could make a cool acronym. Thus “STOLT” was born. Which indeed means “proud”.😄
I forgot Stuttering (Stammering) Pride!😅
Hi Ceil!
Thank you for sharing your story. I feel that people who clutter sometimes get left behind when talking about those who stutter. It was educational as someone who does not know a lot about cluttering to read your post.
Thank you! If just one person can get to know more about cluttering, it’s a good thing. The more people who get to know about it, the better.
While stuttering and cluttering are different, we do share some traits. Which can cause confusion when only the stuttering side is seen, and not the cluttering side. And if you’re looking for help or therapy, and the help/therapist doesn’t know anything (or just a tiny bit) about cluttering, that means you won’t get the help or therapy you want or need.
Which is why I think it’s so important to spread the word about cluttering.
Hello, Ciel!
As an SLP student clinician, your story was very inspiring. Thank you for sharing your story with us!
My pleasure! I hope I have inspired you to delve deeper into the subject of Cluttering.😊
Thank you, Ciel, for sharing your story! – Ana Paula Mumy
You are most welcome!😊
Hello!
I am fascinated to hear about your experience with cluttering and it offers so much to be able to reflect on. I am currently a graduate student to become a SLP, and your perspective, ways you described it, and examples you gave helped me understand it better than any previous ways I have come across. I admire that you used what you had gone through and turned it into advocacy in starting up the chapter! I was wondering if getting your diagnosis of a clutter affected you in any manner?
It was a help having a “peg” to hang it on, since it wasn’t stuttering (stammering). But it didn’t help much, since I still though it could be cured, more or less, and tried various (for me) useless therapies.
And I met so preciously few fellow Clutterers (I still do…) I was still pretty much alone.
The change came when I joined the Norwegian Association. Not that I met so many more Clutterers, but I met others who had their own speech challenges, and that was sort of an eyeopener. There was a community.
But I was still alone, so I had to speak up. And I was heard. And it became my Mission to spread the Word, since Cluttering was (and still is) rather unknown, even though it’s as common as stuttering (stammering).
I clutter just as bad, but I have a knowledge now, and some tools (like DAF, Delayed Auditory Feedback).
And I have learned some other “coping mechanisms”, and the fact that I know what it is, helps.
Knowledge is power, as they say. 🙂
Hey Ciel, having got to know you a bit better these past couple of years I am very happy to see you are ‘carrying the torch’ for clutterers everywhere! I hope they can be discovered and helped in the same way that finding out you weren’t alone also helped you. Great story – thank you for sharing 🙂 Gina
Thank you! Indeed, I spread the Word about the Book of Rutger!
As you know, the body of knowledge is growing, but it tends to be in professional journals, which tend to stay within the professional circles. This is not a critique, it’s an observation. Which is why I keep plugging Rutger’s book, “Too fast for words”, because it’s written by e”lay person” who clutters himself, for “regular” people who clutter, and for SLPs, families and other who will benefit from more knowledge, written in a “human readable” form.
Professionals use a “professional” language, because it’s precise (which is fine), but it’s often difficult for “laypersons” to understand these terms. There is still preciously little written about Cluttering for “laypersons”, I can still just think about Rutger’s book.
I decided to do presentations, I find that to be my “thing”. Rutger did a book, Joseph a YouTube channel, I found presentations (of course, Rutger Wilhelm does presentations too, I first saw him in the World Congress in Iceland “many years ago”. Plus he’s active in the Dutch Stuttering (stammering) association.
You could say there’s an undercurrent of Cluttering knowledge, but undercurrents can be hard to find.
If just one person learns something about cluttering, then that person can bring it further out, be it to their family and friends, or (and) their SLP. Or if an SLP who was unaware, becomes aware, I have had success. We have had success.
And I had the pleasure of attending a Keynote Speech in the World Congress in Rovaniemi, by a very knowledgeable SLP, about cluttering, And a very good speech, too. So the number of Missionaries are growing!
Ciel,
It’s so lovely to see cluttering represented here! I love how you describe it as your remarkable pronunciation,
Nic 🙂
Thanks! You need a bit of humour, it’s easy to fall into a black hole, or at least feel a bit down at times.
So, do some jokes about it! There are stuttering (Stammering) stand-up comedians who use their stutter/stammer as part of their act. I (we) could do that too, but then the show would tend to be rather short, an hour condensed into half an hour because we speak so fast andcondesethwrdsndsllabls quite a bit. Or we could do “The King’s Speech” in half the time! 😛
Although I think I’ll stick to presentations… 🙂
Ciel, thank you for sharing your story with such honesty and humor. I found it especially interesting because one of my close friends also clutters, and your descriptions helped me better understand some of what they experience day to day. They’ve mentioned how tiring it can be to repeat themselves or feel misunderstood, especially in busy or noisy places, much like your experiences as a tram driver. I really admire how you turned your challenges into advocacy by joining STOLT and even starting a local chapter, it shows such strength and leadership. Your story reminded me how important it is to listen with patience and curiosity, and how much understanding can grow when people like you share your journey so openly.
-Kim