What will it take to shift mindsets from “stuttering should be fixed” to “stuttering is OK?”
It seems like there is still a long way to go before stuttering is normalized, and not seen as something that needs to be fixed or eliminated. Even though there has been a lot of evidence based research that tells us that it’s critical to help people who stutter find ways to live with stuttering, why does the default still seem to be offering ways to enhance fluency? How are today’s SLPs and SLP students being exposed to stuttering? The word “pathology” itself denotes “disease” and “disease” is usually looked at as something that needs to be “cured.” Could that be the problem – the use of the word “pathology?”
Hi Pam,
Personally I think it has to do with the schools for SLPs. I know that I did not have enough hours to teach my students what I thought they needed to know. And I was told to teach them the theory and techniques they can use to help the client get more fluent. And some of the things I do as a specialized SLP are far more complicated than what an SLP can do. In the last 2 courses I taught we only had time to talk about childhood stuttering. Nothing else was allowed, because there was no time. Of course I don’t know what it is like in other countries but in The Netherlands and Germany, this is where it starts.
Thank you Manon.
When you say you were told to teach about techniques they can use to help clients get more fluent, or nothing else was allowed (beyond childhood stuttering), allowed by whom? Don’t instructors/professors develop the content they teach? It seems like such a shame to not be able to go beyond teaching fluency strategies. What about the rest of the stuff that comes along with stuttering?
I really appreciate your honesty.
There was a curriculum that I had to follow at some universities/schools. This last school just had Childhood Stuttering in their program and after that there was no time for adolescents and adults. Of course I snug in some things about those two groups, so they had a better understanding, I invited an adult person who stutters, but because of the schedule made by others I should stick to the curriculum. The curriculum often was old!! And I was not allowed to change it. And to be honest….. that is not the right way. So I try/tried to get my message through, which is this year’s ISAD theme 😉 One size does NOT fit all, to get that message across as much as I could with the limitations I have/had.
Pam, this is a very important question, and though I agree with you that we have a long way to go, I am encouraged seeing that more and more instructors in the US are inviting guest speakers who stutter into their classrooms and/or utilizing books (such as “Every Waking Moment: The Journey to Take Back My Life from the Trauma and Stigma of Stuttering” by Christopher Anderson or “Life on Delay: Making Peace with a Stutter” by John Hendrickson, among others) so that students can learn from those who stutter. I believe this shift is important because when we understand the stuttering experience in greater depth, we can move away from “pathologizing” to truly helping people who stutter as allies and guides.
Ana Paula,
Thank you. I agree that it is heartening to see more and more instructors are involving people who stutter in the education of future therapists. And your work with Spero, fostering the opportunities for therapists to really become allies, is going a long way towards the goal of truly helping people who stutter, who may not be looking for fluency enhancement.
I wonder if something like removing the word “pathologist” from a therapist’s title could help with moving towards acceptance vs fixing.
Pam
Dear Pamela,
I am impressed by what a great topic you have suggested as an opening question. Thank you. I must admit that this has been a critical question for me professionally for some time: how to change the narrative about stuttering in my country (Poland).
I was educated in the trend of seeing stuttering as something that should be eliminated. During my university studies, I was almost exclusively taught fluency shaping approaches and that the goal of therapy was fluent speech. Stuttering was treated as a disorder, a deviation from the norm that should be eliminated. My transformation process was long and not easy. I was fortunate in that I came across outstanding teachers along the way. This probably helped me from the beginning, I couldn’t fully accept this narrative about stuttering as I come from a family with a long history of stuttering. Meeting people who talked about stuttering differently, as if it were an anotherness, was an almost metaphysical experience. I keep catching myself when old habits are resurfacing in me. Talking with my students, I comment out loud that by way of example, now I have spoken on the subject of stuttering the way it used to be spoken in those terrible old days. I want to believe that this is changing. I have a sense of a mission – to change how stuttering is described in my country. My colleagues and I are already presenting stuttering differently.
Nevertheless, I have a feeling that it will be a long process. Just yesterday, I read an exciting and valuable post by a good friend of mine, a specialist in stuttering. In this entry, the word “problem” was used in reference to stuttering. I admit – it offends me. We need to sensitize ourselves not to value, not to problematize and pathologize stuttering. We should try to talk about stuttering as a trait. It has a chance to make our SLT work much more manageable and the lives of individuals who stutter much easier.
Once again, thank you for this meaningful topic to consider.
Take care, Kasia.
PS I can assure you that my students are very sensitive to what language they use to talk about stuttering. They will not call stuttering a “pathology” and will not “treat” it. 😊
Thank you so much, Kasia, for this very thoughtful and honest reply. It is a testament to your growth and journey as a clinician for you to acknowledge that you needed to move beyond the traditional fluency shaping therapy taught to aspiring speech therapists.
The language we use to describe stuttering can set the stage for how we feel about stuttering. I am happy to hear that your students will not “treat” people with the “pathology” of stuttering.
I was fortunate to co-facilitate a great NSA session called “The Language We Use” last June. It was well attended and deeply insightful. Perhaps you might be interested in viewing it sometime.
https://youtu.be/4CTPfvSgwnk?feature=shared
Thank you again,
Pam
Dear Pamela,
Thank you for this recommendation. I must admit that I have not had the opportunity to see a recording of this session before. I am very impressed with this discussion. It is precious; I will recommend it to my colleagues and, most of all, my students. Once again, thank you! Take care! Kasia
Hi Pamela!
Thank you for raising your important topic!
Like you, I wish that stuttering should be normalized, and in all settings being a natural part in life. In the same time, I also wish that we (SLTs, stuttering communities, researchers and other professionals) could be dealing with stuttering in a much more nuanced way. If we could consider stuttering much more within functional- and contextual frames, I believe we could ‘understand stuttering and ‘the stuttering experience in greater depth’ (words borrowed from Ana Paula). In my clinical practice/professional life, I have met so many different people with so many different experiences, wishes and needs. Therefore, I think the art of speech therapy is to handle this variability in an individualized and contextsensitive way. By acknowledging that «stuttering is whatever people who stutter feel their own stuttering to be» (words by Shapiro, 2011), we may consider stuttering and degree of acceptance and openness (etc) along different axes, and not as dichotomous endpoints.
I have during the last 10 years had a great pleasure to be educated within the ACT appraoch (Acceptance and commitment therapy). In ACT, acceptance means opening up, making room for, and allowing painful feelings, sensations or emotions to be as they are. Within the framework of ACT, accepting the existence of stuttering does not necessarily mean liking or wanting it, but rather making room for the stuttering and fostering curiosity about it (ref. Cheasman, Simpson, & Everard, 2013). This aspect can be transferred to all issues in life, and not only stuttering. Hayes, Strosahl, and colleagues suggest that the word acceptance can carrry negative connotations in therapy, and this aspect may include some people who stutter. Cheasman and colleagues have recommended to introduce the concept of acceptance via terms such as ‘friendly curiosity’, ‘making space for’, and ‘willingness’ rather than using the word ‘acceptance’ itself, and I support very much this suggestion.
When therapy/professional support is regarded, I think it is important to know what the persons themselves want. Some years ago, I systematically collected information from different people who stutter. Based on the result, the majority of the persons wanteded to focus on both physical and psychological aspects in therapy. Furthermore, gaining a sense of control over the stuttering was regarded as important for most of them. Further, the study confirmed that multiple and individual factors were influencing the persons’goals for therapy, and that their goals in stuttering therapy were mainly anchored in the persons’ wish of better coping in real world settings.
Based on my own clinical experiences as well as previous research, it seems that we as professionals need to be open and flexible when therapy and support are concerned, and that we have to aknowledge that there need not to be any contradiction between accepting stuttering and wishing any change at the same time. In fact, it seems to be a pretty strong congruence between the persons’ communicative challenges, and the desire to improve ease of participation in communicative settings.
Overall, I think it is important to open up for even more voices and opinions in the stuttering communities and the stuttering field in general. Maybe then we could be even stronger as communities and organisations in the future.
Regarding the word ‘pathology’ – this word is influenced by differences in different cultures. Personally I don’t ‘fancy’ this term. However, in Norway, this word is hardly used. However, speech-language-therapy is a common and acknowledged term, I believe. I very much follow Katarzyna’s statement above, that we have to be aware and very much sensitive about how we are describing stuttering and are using relevant words in our respective languages.
Thank you again for your important issue you have been raising, Pamela!
Best wishes from Hilda (who hopes that the written English is understandable).
Hi Hilda,
Thank you so much! And your written English is more than understandable!
I am in agreement that “speech language therapist” seems to be a more neutral title to those who help and guide people who stutter to some type of change in their communication. It may just be that the word “pathology” is more used in the US.
And I also agree that more voices and opinions are needed in the stuttering community and field. That’s why it’s exciting to see two professionals on this panel that are not SLTs, but mental health professionals.
I received a lot of help over several years from a psychotherapist extraordinaire who helped me break down the deep shame I held for many years about stuttering. I tried a traditional speech therapist for a very short time, as an adult, and found that the rigid reliance on fluency shaping was not for me – I resisted at every turn. I just needed someone to tell me that it was OK to stutter and that I wasn’t broken, as I had long believed due to early shame based messaging from my father.
I am happy that more and more therapists are shifting to a more open mindset of guidance, rather than the therapist is the expert, which so many of us are familiar with.
Pam
Thank you so much, Pam!
I follow you fully! Like you, I find it very interesting that you are having a panel of different professionals who are having different skills and competence, because I have a great sense of interdisciplinary work and collaboration in the stuttering and cluttering field, including in research. By including different professions, we all may expand our understanding and flexibility in work.
I am also sorry to hear that your therapy experiences as an adult did not meet your expectations.
If the SLT approaches are too limited and rigid, I believe, like you, that the outcome of the collaboration may lead to disappointments and lack of trust. In opposite cases, the support and collaboration should rather lead to an improved activity in life (regardless of the persons’ speech fluency). To do what matters and to live a meaningful life is something we all want to achieve. In this context, and already highlighted, I believe SLTs in general need to be even more sensitive to each individual’s needs, goals, values, and responses in therapy. By improving our understanding of these aspects, I believe we can strengthen the collaborative process even further. In turn, this may improve the therapy outcome tremendously, and the outcome has to be defined by the persons who stutter themselves. In general, I believe the persons who stutter should be more actively involved in the collaborative process, as well as in the evaluation of the therapy in its entirety. These evaluations are very important, because it gives the therapy a direction! In the same time, we as SLTs must give enough space for, and ensure that such evaluations are carried out in a respectful and honest way. In large extent, I believe that many SLTs are very much aware of this, and also regard the persons’ stories and feedback as important sources of information. Of course, this may be influenced by personal and cultural differences. Here I don’t have the best overview, Luckily we have more tools/measures available now to help us in this regards. I also think that if we as SLTs do behave as ‘experts’, we can lose the sight needed to be a good professional, regardless if we are a SLT or a mental health professional.
Again, best wishes from
Hilda
I am wondering what your recommendations would be when working with a PWS who also has additional diagnoses. For example, if the client stutters and has an articulation disorder, how would you approach treatment? Is there a particular approach you would use or modify previously established approaches for this client?
Hi elisenj, thank you for this important question. I think it is very important to look at the individual here. At the moment for example, I am seeing a 5-year old boy with a pretty severe stutter. He is bilingual and has severe language and articulation problems in both languages. In his case I have the feeling that these problems also trigger his stuttering. So I am working both ways. I am stimulating his language and articulation and letting him know that stuttering is OK. I also model some easier stuttering.
In other cases, such as a mild articulation disorder, I might even leave it for a bit to make the child a stronger communicator and again showing them that it is OK to stutter. Or I just correct the articulation by modeling it, through repeating the word in a different sentence, emphasizing it a bit. This might take a bit longer, but if I would treat it directly, I show the child that it has to concentrate on his speech. Which I do not want, because it can increase the tension in the speech, making the stutter more severe.
Manon