About the presenter: Hilda Sønsterud is a speech and language therapist (SLT) in Oslo, Norway. She works at Bredtvet Resource Centre, a national centre with interdisciplinary expertise in the field of speech, language and communication disorders. Sønsterud works primarily with treatment and research related to fluency disorders. She runs courses within the field of stuttering and cluttering and provides clinical practice for SLTs and SLT students. She is a national representative in the International Cluttering Association.
About the presenter: Helene B. Kvenseth lives in Trondheim, Norway. She has a bachelors degree in occupational therapy and currently works as a health-care worker with people with disabilities. She is a person who clutters and was one of the two people with cluttering who attended the first world conference in Bulgaria.

You can post Questions/comments about the following paper to the author before May 4, 2010.

How a person with cluttering and a SLT can spread the word about cluttering

by Hilda Sønsterud and Helene Kvenseth

How a person with cluttering and a SLT can spread the word about cluttering This manuscript describes some ways in which a person who clutters and a speech and language therapist from Norway have worked together to spread awareness about cluttering. The manuscript outlines how a consumer and a therapist can complement each other by combining the inner and outside perspectives of cluttering.

Reflections of Helene, a person who clutters:

In May 2007 the first world conference about cluttering was held. It also was the starting point to an interesting friendship between a speech therapist and a person with cluttering.

When I agreed to make a presentation in Bulgaria about how it was to live with cluttering, I really did not know what to expect. I did not know anyone else going, and as I was terrified to do a presentation in English, not to mention to do so in front of a lot of international experts. I wondered what had made me agree to do this. After the presentation was over and I finally was able to relax I was invited by Hilda Sønsterud to join her for a coffee. During that evening we realized we had a lot in common, both in our opinions towards cluttering, but also in interests, likes and dislikes. Before the conference was over we shared email-addresses and a friendship had began to grow.

After coming home I was invited by Hilda to write an article to the Norwegian journal for speech therapists. In the beginning I was very negative, the presentation in Bulgaria had been emotional enough, and did I really want to do this in writing too? I ended up doing it, and during the writing process I began to see that I had grown. I was able to see cluttering from the "outside", and when a shorter version was sent to the Stuttering Magazine I used Hilda as a partner to discuss and share opinions with. As Hilda gave me feedback, she also helped me to learn more about the theoretical background to cluttering.

Sometime later Hilda invited me to make a presentation to her fluency disorder colleges. I was a little reluctant to begin with. I was worried that since most of them might already have read the text I had written, what else would there be to say? It turned out to be the turning point to my emotional relationship with cluttering. The people there gave very interesting questions, and for me it was an interesting feeling to see that I had started, in a strange way, to like my cluttering. It had become more fascinating, and it had began to give me an opportunity to meet nice people, discover new levels of understanding, and remind me that - no, your cluttering has still not magically disappeared, but here is a new reminder to control it.

In autumn 2009 we made a presentation at Bredtvet Resource Centre, a speech therapist centre in Oslo where Hilda is working. This was our first time we did a presentation together, combining Hilda's theories and experience and my experiences living with cluttering. Hilda presented some theories/clinical aspects, and then I added my opinion. We answered the questions together, depending on who could answer it best. The presentation turned out to be very successful, every seat was taken and people really seemed to pay attention.

In our opinion, working together as a speech therapist and a person with cluttering is an interesting process that benefits both of us. As Hilda has a lot more initiative than me, and also knows where the opportunities to spread the word actually are, she is the creative one. I usually agree to Hilda's suggestions. During one of our more relaxed conversations we thought about why our collaboration works so well. Our personal chemistry is an important factor, as doing a presentation about cluttering - written or spoken, to me means I has to break my natural persona being shy and stay quiet. Being able to communicate well together, and being genuinely interested in seeing each other as resources instead of finding it important to be "right" is also a key element.

Reflections of Hilda, a speech and language therapist:

When I first met Helene at the First World Congress for Cluttering in Bulgaria in 2007, I immediately recognized her wisdom and insight, including insight into her own disorder. It was easy to register that her level of awareness was very high. We shared a common interest in the nature of cluttering and had several talks about cluttering issues and cluttering treatment. She had several personal experiences and meanings about what she found useful for her own communicative development. I learnt much from her during the days in Bulgaria, and there have been several SLTs who have learnt from her personal stories since then.

Our collaborative relationship and friendship developed in a more binding way when we received a personal request from the ICA committee in June 2007. We felt honored by the trust and gratitude that our dual perspectives as consumer and therapist were held in consideration. In the same way, we felt humble for all the responsibility.

Helene has given me new insight into the phenomenon of cluttering. I often refer to her in professional networks for SLTs which I am involved in, or when I am providing my own cluttering courses for SLTs. I often use Helene as a reference when I am informing consumers and parents about cluttering. Helene is available and positive about being contacted, both by professionals and consumers. This I find very valuable.

Cluttering and speech anxiety

Since I first met Helene, the importance of informing colleagues about speech anxiety and negative emotions which may occur in cluttering has become more relevant, especially in contexts with adolescents and adults with cluttering. Even though a lack of awareness is very often a characteristic feature of cluttering, we should not forget that "people with cluttering are often aware of their speech disfluencies, but not at the time they occur" (van Zalen-op't Hof, 2009), and "Some cluttering clients actually do have good awareness and present at clinic frustrated by their inability to communicate clearly" (Ward 2006, p. 364). Joseph Dewey has an interesting and distinct way of expressing some of the same topic: "Persons who clutter typically aren't bothered about their speech - they're bothered that other people don't understand them" (Dewey, 2007).

We all know that everyday conversations in face-to-face contexts are generally acknowledged as the primordial type of communication, and that in these contexts a person's identity and relations are usually established and maintained. For people with cluttering who have some insight about their communicative inabilities, it may be a double frustration: to be aware of the fact that they suffer from a communication disorder, but not to be aware of when the problem will occur.

Cluttering and self-monitoring skills

For a person with cluttering to be a representative for other people with cluttering, to be an advocate for their interests, and to inform people in general about the nature of cluttering requires a great deal of consciousness about one's own disorder. Furthermore, to be able to talk about one's own challenges in different communication situations requires that the person with cluttering has reached nearly the highest level in treatment: self-monitoring and maintenance of fluency. "Control over an extended time period rests on the individual's ability to self-monitor, and to put into practice the techniques and procedures learned in therapy" (Ward, 2006, p. 373).

As far as I am concerned, it seems that Helene has reached almost the highest level of speech control. It seems that she is able to use her techniques and procedures nearly every time she wants to, and she is able to switch between different levels of speech control, depending on persons and situations. According to Helene, she can sometimes control her speech, and sometimes not. Sometimes the only way she can find out if people have understood her, is by analyzing the communicative context afterwards. More often she finds that the solution is to look for clues from her listeners such as gazing, puzzled looks, or constantly being asked to repeat the sentences.

For many people with cluttering, controlling speech is a life-long process. Helene has made this statement clear by saying: "Controlling cluttering is a two step process: One, learning to control the speech and two, continue to control the speech."

Undoubtedly, Helene is at the second step. By representing cluttering in Norway, she gets numerous opportunities to maintain her speech control in new communication situations, and to constantly expand her zone of comfort.

One "happening" where Helene really got the opportunity to expand her zone of comfort, and where we got the opportunity to share our message to more people, was at the yearly arrangement "Open Day" at Bredtvet Resource Centre. On this day the centre is open to the public with exhibitions, lectures etc. within the different areas of speech and language disorders. There Helene and I had a joint presentation together. It was a session on cluttering where both of our perspectives were complemented in a natural way. I think our message was authentic and honest, and a high interest from several professionals and others was registered. During this day, a journalist from a local newspaper in Oslo wanted to make an article about this topic, and Helene was showing courage and strength when she made herself available for this interview.

Cluttering and maintenance

It is important that the person with cluttering and the SLT work together to find the right tool from the "cluttering tool-box," in particular, to find a way of dealing with the maintenance of the skills learned in cluttering therapy. The way of dealing with these challenges may vary from one person to another. It is highly important that the treatment is carried out in an individualized way. "To foster transfer and/or maintenance, the clinician should program specific activities and assignments designed specifically for each client's needs" (St Louis, Myers, Bakker, & Raphael, 2007, p. 319).

Helene's contributions have made more people aware of even more aspects related to cluttering and cluttering treatment. In the same time she has expressed gratefulness about having the opportunity to share her experiences with others. She has said: "Learning to speak in a new way is challenging. Before, when I was learning to pronounce words in an understandable manner, the words felt extremely unnatural. When I speak understandable now, it feels and sounds natural. The bad feelings are disappearing with practice too."

In many ways, Helene has found her way of maintaining her communication skills. She has become her own SLT, but is still realistic enough to realize that if she forgets to make a deliberate effort to maintain the skills she's learned, she will go back to her natural "fast self." Helene has found her "specific activity" for managing her cluttering behavior in the long run too, namely to be involved in the ICA, to increase awareness of cluttering, and to help others. For her, it is a positive realization, and it makes her keep going forward, open-minded and with an explicit wish to continue her own process of exploring her own self and her life.

Complementing inner and outside perspectives

I think it is a win-win situation for all of us if the perspectives from the people with cluttering and the SLTs are combined. By combining both the internal and external perspective, we are able to reach a higher level of knowledge and understanding, and probably to find new directions in therapy and research.

I am grateful to Helene, for giving me the opportunity to collaborate and to complement her perspective. In addition I am grateful to the ICA (International Cluttering Association) for giving me the opportunity to continue spreading the word about cluttering, and for highlighting the importance of including all perspectives within the cluttering phenomenon.

(Parts of this manuscript were published in the Perspectives on Fluency and Fluency Disorders, titled "Exciting Collaboration Turns Cluttering Fascinating", July 2009, Vol. 19, 2)

You can post Questions/comments about the above paper to the authors before May 4,2010.

SUBMITTED: March 13, 2010
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