#52 Unraveling Stigma-ties with Dr. Michael Boyle

 
Our field really doesn’t even have a good agreement about what severity is.
— Quote Dr. Michael Boyle

BIO

Michael P. Boyle, Ph.D., CCC-SLP, is an Associate Professor in the Department of Communication Sciences and Disorders at Montclair State University. He researches psychosocial aspects of stuttering, including the impact of societal stigma on the communicative participation and well-being of people who stutter. Dr. Boyle’s research also focuses on developing assessment methods and interventions to reduce the stigma of stuttering.  Dr. Boyle developed the Self-Stigma of Stuttering Scale (4S) which is used internationally by clinicians and researchers and has been translated to 10 languages so far. Dr. Boyle has also consulted with a variety of therapists, researchers, and advocacy groups nationally and internationally to help them with using evidence-based strategies for stigma reduction. He has authored over 35 scientific papers and book chapters, mostly on topics related to stuttering.

Listen to this episode on Apple Podcasts, Spotify, Google Podcasts or your favorite podcast platform. You can also watch the interview on YouTube.

RESOURCE LIST

  • Boyle, M. P., & Gabel, R. M. (2020). “Openness and progress with communication and confidence have all gone hand in hand”: Reflections on the experience of transitioning between concealment and openness among adults who stutter. Journal of Fluency Disorders, 65, 105781. https://doi.org/10.1016/j.jfludis.2020.105781

  • Boyle, M. P., & Gabel, R. (2020). Toward a better understanding of the process of disclosure events among people who stutter. Journal of Fluency Disorders, 63, 105746. https://doi.org/10.1016/j.jfludis.2020.105746

  • Boyle, M. P., Beita-Ell, C., & Milewski, K. M. (2019). Finding the good in the challenge: Benefit finding among adults who stutter. Perspectives of the ASHA Special Interest Groups, 4, 1316-1326. https://doi.org/10.1044/2019_PERS-SIG4-2019-0024

HIGHLIGHTS

0:00 - 3:33 Intro 

3:33 - 6:50 Formal Bio

6:50 - 9:26 Focus on Stuttering

9:26 - 15:13 The 4s Scale

15:13 - 20:30 Other Projects 

20:30 - 23:13 Why this podcast?

23:13 - 25:18 The Gold Standard

25:18 - 28:05 My son doesn’t stutter

28:05 - 33:36 The Invisible Side of Stuttering

33:36 - 36:09 Self-esteem and Social Support

36:09 - 40:39 Science and Art

40:39 - 44:49 Representation

44:49  47:14 The Psychosocial Emotional Side of Stuttering

47:14 - 48:46 Giving the Client Option

48:46 - 53:07 Final Nugget

MORE QUOTES


There's a few different branches of this research. But I think at its core, it kind of comes back to stigma and managing that through disclosure and just in general, trying to find predictors of wellbeing and communicative participation in people who stutter and looking for those things. If we find more of those things and they're modifiable then we can assess them and treat them to hopefully make the person feel better and also improve their communicative participation and functioning. - Michael Boyle

TRANSCRIPTION:

Uri Schneider: All right. Well, here we are. It's an unusual day. It's Tuesday. Usually we get to have these conversations on Thursday, but there's two reasons.

Uri Schneider: One of them has to do with me. One of them has to do with our incredible guests that we had to pull it off on a different day. Um, you know, when I, when I invite certain people on, some people are like, yes, just tell me the day and I'll be there.

Uri Schneider: Other people are like, yes, let me look at next year's calendar. And then some people it's something in between. Some people need a little cajoling or feeling comfortable. Um, Dr. Michael Boyle, our guest today falls somewhere in that middle range. So we had to do a little bit of like bending calendars and getting, uh, spouses and family members lined up to make this time possible.

Uri Schneider: So I'm super grateful and I want to jump right in because we're going to have a hard stop for the time that we've carved out for today, but you're really in, for a treat. And what's exciting about Dr. Michael Boyle is when I post who we're going to be talking to. Sometimes, you know, the usual suspects show some interest and had with Dr.

Uri Schneider: Michael Boyle man, things were lighting up around the world. There were people in Brisbane, Australia trying to figure out the time difference. And I was just listening to it. It was good because I was just listening to a talk on the international Dateline, trying to understand how it could be a different day.

Uri Schneider: And like potentially more than the number of hours you think could be different between us. But the bottom line is it's midnight in Brisbane. So if you're listening, let us know you're there, but we hope you're sleeping and you'll watch this on the replay. All of these awesome conversations are available right here on the Facebook video or on our blog page and your speech.com/our blog, where we put notes and links that the guests would like to share research opportunities and so on.

Uri Schneider: And of course there's the podcast. And when you subscribe or you follow, or you share that. These conversations and these individual stories get shared further, and I think that's really worthwhile. So Schneider's, it's transcending stuttering with the reach Snyder on any podcast platform and without further ado, uh, it's great to introduce, I'll do the formal intro and we'll jump right in Dr.

Uri Schneider: Michael Boyle is like, I'm one of those gems right in your backyard. So being in the tri-state area, we have a lot of superstars, but we don't get to connect nearly enough. He's right in New Jersey at Montclair state university. But he has a really a global impact, both in terms of the research he's done professionally in our field and also just his, his network of people.

Uri Schneider: And they were telling me in other countries, they don't start their stuttering course without the students listening to Dr. Oil's talk about, uh, meditation. And mindfulness. So I think it's a, it's a big treat to be here. And I did a little, little body scan before we started just to kind of get myself grounded.

Uri Schneider: And, uh, so Michael researches the psychosocial aspects of stuttering, including the impact of societal stigma on the communicative participation and wellbeing of people who stutter. Uh, his research also focuses on developing assessment methods and interventions to reduce the stigma of stuttering. Dr.

Uri Schneider: Boyle developed the self-stigma of stuttering scale for us. Which is used internationally by clinicians and researchers, and has been translated to 10 languages so far, so far. So if you're interested in translating it to the 11th contact Dr. Boyle, uh, he also consults with a variety of therapists and researchers and advocacy groups, advocacy groups, nationally, and internationally to help them, uh, with using evidence-based strategies for stigma reduction, he's authored over 35 scientific papers.

Uri Schneider: And book chapters, mostly on topics related to stuttering and without further ado, what an honor to have Dr. Michael Boyle,

Michael Boyle: thank you for, for inviting me on or it's nice to be here.

Uri Schneider: It's a, it's a big treat. Um, so as I often start off, I ask, you know, That's the formal bio and, and I actually wear the Sansi a fancy shirt because you're one of the most well-dressed, uh, colleagues of mine in your profile, pic, many speech language pathologists, dress down.

Uri Schneider: I'm often at conferences. And like, I'm the only one in a full button down shirt, but your bio picture, man, you are dressed to impress. And, and so I thought I would dress up for this one, but, um,

Michael Boyle: cool. Um, A little bit more in informal this morning, probably be because I'm doing this from home, but, uh, yeah, it's kinda funny.

Michael Boyle: Uh, early in my career, I used to wear a. I shirt and tie every day to work. And I found out that, uh, faculty members and researchers of my generation rarely do that these days. So there's kind of a different culture, but I think it's probably because when I went to graduate school, my advisor always had the suit and tie.

Michael Boyle: And so that's, that's, that's what I, that's my model basically. And then I got out there and realized that's not really how people. Dress most often. So I probably overdressed most, most conferences, but,

Uri Schneider: uh, yeah, I think we can come back to that. Cause when we talk about the topics that you've done so much work and looking at it in terms of stuttering and stigma and perception and attribute, I think it's interesting to think about things outside of stuttering and how let's say, you know, the formality of one's presentation or, you know, clothing, what kind of, what kind of perceptions and attitudes are planted in those impressions?

Uri Schneider: I think there's something there, but I would just say. You're a, you're a very impressive guy and you've, I contributed so much and I'm really looking forward to diving in, but most importantly, beyond the formal bio. So what's something nobody would get from your bio that you'd like people to know about.

Uri Schneider: You. Uh,

Michael Boyle: let's see, um, beyond the formal bio. Well, I got into the field, uh, because of my own experiences with stuttering. I think probably a lot of people know that, but from the bio, maybe not. Um, so I got into it for that reason and, uh, stuttering played a big part in my life growing up. Uh, so. I got into it with a deep feeling of, okay, this is a really important issue.

Michael Boyle: And I had experienced with that, uh, day to day throughout my life. So that is really a big motivator of what got me thinking about, you know, maybe I should do this as a career. Um, so the personal side of it is definitely, uh, relevant. Uh, to me, what else about me? Well, uh, I've been home now for almost the past year, uh, due to the current situation.

Michael Boyle: So I have, um, I'm here with my wife and my two kids. I have a son who's five and a daughter. Who's two. And so if you hear any background noise, I should probably disclose that off the bat as well. I know we might talk about disclosure later, but when disclosure is, if you hear any chaos in the background, it's my little kids running around.

Michael Boyle: So, um, but yeah,

Uri Schneider: amazing. And what, was there anything in your journey, either experiences you had, uh, in, uh, in, uh, For the purpose of your studies and your focus on stigma and the psychosocial aspects. Was there something about your life journey that put a spotlight on that? Or was it the absence of a spotlight on that that kind of led you to it?

Uri Schneider: How did you come to that focus? Was there anything that was connected to

Michael Boyle: that? Yeah, that's interesting. I think it, at the time when I was in graduate school, when I was looking for something to. To do my research on, uh, it seemed to just fit really well. I was reading a lot about stigma, um, in the psychology literature and it just rang true to me.

Michael Boyle: And I thought, you know, this really makes sense in terms of stuttering as well. And, uh, I liked being able to apply that language into our field. So yeah, that, that definitely resonated. And, um, yeah, I think it. It is important because I grew up and I was, uh, I think I did feel a lot of stigma and, um, and, and still do sometimes as well.

Michael Boyle: So I think it's relevant. I think I'm so motivated by the topic because I know how important it is personally. I can feel it. And I certainly felt it growing up. The idea of. I think there's something wrong with me or what are other people going to think about me if they see this trait of mine and trying to hide it as much as I could growing up, uh, until I got a lot more open about it.

Michael Boyle: So, yeah, I think I, I had always known on an intuitive level that this was a really important topic, but what the stigma. You know, literature did was, it was, it was able to give me some words and some labels for the stuff that I was feeling. And I thought this is really nice. I'm able to use some concrete language to actually describe what I'm experiencing.

Michael Boyle: And it seems like a lot of people, uh, are resonating with that as well, because. The idea of stigma is kind of more prevalent now, I think in our field and you hear that word a lot. And so I think it was always there, you know, to a certain extent, but the language around it has changed a bit. And with that, that helps people because they can clearly conceptualize things better rather than having some fuzzy idea that, yeah, this is unpleasant and it's hard socially and you know, I'm embarrassed by it.

Michael Boyle: What are the deeper roots of that, that we can explore. So, yeah, I think there was a lot of personal, uh, threads that connected me to this topic. So I was kinda lucky to stumble upon it in my, my research. And it was just a good fit for, for what I I had already experienced. So, yeah.

Uri Schneider: That's awesome. Um, so we have this in the bio, you know, mention of this incredible tool.

Uri Schneider: So look at how to, how to bring evidence-based research into real life practice. I think that's so important because I think not enough practitioners are leaning on and staying up to date with the latest and best research that's coming out from the people like Dr. Play on so many others. Uh, there's a lot of new research.

Uri Schneider: So if the last time you were updated, Was just 10 years ago, there's, there's a bit of an upgrade. You know, you need to hit upgrade, update the app because there's a lot of new information that, that truly, uh, opens new doors of possibility changes some of our older understandings and certainly adds dimensions that we kind of knew were there, but we didn't know how to touch.

Uri Schneider: So I think for practitioners to get updated, but the other part that's exciting is. Being considerate from the ivory tower perspective of how do we bring it into practice and make it something that's touchable for the people on the front lines that are changing lives and touching lives. Can you share anything about how your tool is making that bridge?

Uri Schneider: Because I think that's rather unique that, uh, you know, you've brought that into the world and what you'd like practitioners to think about and realize with it and what you'd like your, your research colleagues to consider in ways that you've brought that into that. Practical space. Yeah.

Michael Boyle: Sure. So there, there are certainly a lot of scales out there that already existed in terms of measuring attitudes and thoughts and feelings.

Michael Boyle: So w what was a little bit different about this one? The F uh, for us the self-stigma of stuttering scale, I always say that we just call it the four S cause even if you don't stutter, that's a little bit hard to say, so the forest, um, and, uh, yeah. And so that was really developed. Um, and modeled after this, uh, uh, uh, theory of stigma that was in the psychology literature that looked at this model of awareness agreement and application.

Michael Boyle: So it kind of split things up into those domains. And that's the novel part of the scale that makes it different from other scales. It measures. The first part is how much is a person aware of the negative perceptions about people who stutter? How much can they feel that or sense it? The second part is how much they agree with the negative stigmatizing views and apply them to other people who stutter.

Michael Boyle: And the third is how much. Do they apply that to themselves personally. So they apply those negative stigmatizing views to themselves. Um, so it's kind of split up in that way and that makes it a little bit different than the other scales that are, are out there. And again, it was made specifically to address this multi level model of stigma, because that hadn't really existed up to that point.

Michael Boyle: So I needed to make a scale basically. To measure it because no other tool could really do the same job. So, um, it, you know, in terms of its use, I mean, it was made, uh, in large part for sort of theoretical reasons and research, but I think it also has clinical applications as well. If you can get a sense for.

Michael Boyle: How much a person is aware that, or how much they perceive that they're viewed negatively, how much they agree with those negative views and how much they apply them to themselves. Personally, I think that can go a long way to saying, okay, this person has some, you know, feelings of stigma here that need to be addressed.

Michael Boyle: And so it can be a way to identify people who are more at risk for having more of a negative, personal impact. And then they could, uh, Develop treatment goals along with a lot of other scales, right? So there's a lot of other scales, like the Oasis and like the yacht boss and all these other measures, um, that, that, that could be used.

Michael Boyle: But it's another one that kind of adds a little bit of a new wrinkle to it. Um, so hopefully it's useful to people and like, just as an example, theoretically, anyway, if, if public attitudes continued to. Change in a positive direction. You can imagine, for example, the data on stigma awareness would hopefully get lower over time.

Michael Boyle: Right? So like, you know, we could potentially track that over time to say, okay, right now it's pretty high. Most adults who stutter report being aware that they're, that they're perceived negatively somewhat. Wouldn't it be great if we could use that as. A measure over time in society to see if that changes and hopefully, uh, it would go down over time.

Michael Boyle: The more we educate people. So, so th those are a few of the reasons I think that it's, that it's useful and relevant for not just researchers, but also clinicians

Uri Schneider: a little bit. I think the, uh, the dimensions of thinking about, you know, research and the possibilities and research that constraints and research, and then, you know, frontline practice.

Uri Schneider: Uh, and then what you're talking about also, there's the idea of like, what's going on in society and then what's going on in the little micro communities of individual people, adults, teens, young people, and how can we maybe even influence, and that maybe talks about, you know, disclosure and I like talking about self-advocacy, you know, different words for much of the same stuff, but there was a question from Claudia from Argentina is, is Spanish, one of the 10 languages.

Uri Schneider: She was wondering if you can get the forest and Spanish,

Michael Boyle: actually it's not. Uh, not, not yet, yet, not yet. Right. Um, so yeah, if anybody wants to, uh, you know, partner with me, I've I helped a lot of researchers around the world with their translation. So I help with the translation to make sure that that it's measuring what.

Michael Boyle: I had originally intended it to measure. So yeah, if there's anybody out there interested in doing that, just send me an email and we could work on that, but amazing. Yeah.

Uri Schneider: So it's hard to imagine the 10 languages that don't include Spanish, but that means there's other languages that are possible. So if you're interested yeah.

Uri Schneider: Reach out and either directly with Michael, or if you want to send us an email help@schneiderspeech.com and we can pass it along. Um, yeah. Fascinating. So the. I guess you were sharing that that's, that's one major accomplishment. You've kind of solidified that contribution to the world and, and to the stuttering community at large.

Uri Schneider: And you said you have a couple other projects that you're working on. It would be awesome to just tap into some of those things related to some of the things we were talking to just before we hit record.

Michael Boyle: Sure. Sure. So one of them, I just, over the past year, I did a few more surveys studies with I'm able to get a few hundred people who stutter, uh, adults.

Michael Boyle: So a pretty good sample sizes and one project. Just to extend off of that whole stigma topic, there is to refine the scale a bit and perhaps even add some more dimensions to it. Um, so the 4s currently does not measure things like anticipation of being reacted to negatively. Um, it also doesn't measure.

Michael Boyle: Uh, feelings of shame, uh, per se and embarrassment. And so, um, trying to add a few things to it and, um, a few domains, and I'm not sure yet if that's going to be a part of some revised scale or just a separate thing, but there's a lot more to stigma than what's in the forest actually. And so I'm trying to make some measures that would account for.

Michael Boyle: Uh, a lot more because stigma, I'm not sure you can probably gather this. Right. But stigma is this big umbrella term and it's kind of confusing actually, because people use it to mean different things. And it's kind of a catch all phrase that a lot of people use. I'm trying to really parse that out in terms of.

Michael Boyle: Uh, we really measure this w what are the parts of it? And we make definitions for each part that are really clear and that we can all get on the same page. And that's a big task. So I'm trying to do that. Um, the other one I have in the works is to look at uncertainty. And to see if uncertainty about stuttering is a predictor of, uh, communicative participation and mental, uh, mental health, basically.

Michael Boyle: Yeah. Any uncertainty do

Uri Schneider: you mean from the speaker part of you or do you mean from the listener.

Michael Boyle: From the speaker point of view. So for example, uncertainty about prognosis, uncertainty about symptoms, uncertainty about how do I handle stuttering different, different

Uri Schneider: than the variability that let's say others are looking at.

Uri Schneider: So like the variability of the physical presentation of it, but the uncertainty of what is this thing, and what's the prognosis. And what's the understanding of what this is.

Michael Boyle: Yeah. So the uncertainty, in terms of the person's side, ecology experiencing, like, so for example, is this something that happens to them that's outside of their control?

Michael Boyle: Is it just sort of random day to day where they feel like they have no say over it? Uh, do they have a good understanding of what therapy is all about and what it's supposed to do? Do they have an understanding of the long-term course of stuttering? So. Um, that, that, that builds off of some, some research in the psychology literature.

Michael Boyle: And there's been work, um, by a lot of people, uh, on a topic called, uh, illness. Uncertainty, stuttering is not, uh, an illness per se. It's a condition, but I think the principle of uncertainty is very interesting and it's been looked at a bit, but never with a real dedicated scale, that's been validated. In psychology.

Michael Boyle: So I'm seeing how that links up to and predicts wellbeing and communicative functioning. So that's one project where I'm just analyzing the data. Now I'm actually hoping to submit an Asher presentation for it for next year. So those submissions are due in about two weeks. So I'm trying to run through that one.

Michael Boyle: Um, so th those are two big ones on the. On the horizon. And then also looking at, uh, disclosure more, I've done a few more, a few projects, uh, some with rod gobble who I'm sure you know, who's um, uh, we work with Neil. Over the past several years on some of these projects. Um, and I'm kind of building off of that to look into how disclosure, in other words, how open a person is and how much other people in the environment know about your stuttering, how that's linked up to wellbeing and things like that.

Michael Boyle: So, um, yeah, there's a few different. Sort of branches of, of this, you know, research. But I think at its core, it kind of comes back to stigma and managing that through disclosure and just in general, trying to find predictors of wellbeing and communicative participation in people who stutter and looking for those things.

Michael Boyle: Because if we find more of those things and they're modifiable the ideas that we can assess them, And we can treat them to hopefully make the person feel better and also improve their, their communicative, uh, participation and functioning. So that's the big goal? No, I don't

Uri Schneider: think, I don't know. I don't think most people know why I do this podcast.

Uri Schneider: It was kind of like the accidental podcast. It was more like I enjoy these conversations with people that I hold in. Very high esteem, conversations that I love to have privately. And sometimes wouldn't be able to have, if not for a conference hallway conversation or. Grabbing a drink after a presentation at a conference or an opportunity to give audience to someone like Dr.

Uri Schneider: Boyle. But, um, I find that maybe I could just unpack that was such a rich few moments there. And I just want it for people that are listening, just to understand the value. Uh, first of all, drop a comment of which of these topics you'd like to dive into because Michael and I could both, uh, dive into one or the other or touch both.

Uri Schneider: So disclosure. And then the other issue of looking at uncertainty and, uh, ways as Michael said, ways that those might be open variables for us to influence and what kind of impact that could make in the, in the experience of a person, uh, as well as just understanding how that's another aspect and influencer and predictor of, of the experience of people.

Uri Schneider: But I also want to just touch on your you're starting at a, at an attic with a given. That some people don't realize, I think, correct me if I'm wrong, but all these things you're looking at, how can these things be predictors indicators and open variables for the communicative experiences and success and, and, and, um, Overall experience of people who stutter, you're not looking at how that influences the physical stutter, but the lived experience.

Uri Schneider: Right. Do you want to just maybe touch on that? Cause I think that was an assumption or a given, which is a fair one, but I just want to give light to that from the point of view of a researcher and a person who grew up with a stutter for people who might yet not yet understand why that matters or what that means.

Uri Schneider: And then from there we can dive into why looking at uncertainty disclosure and. And all these things is so relevant, but without appreciating that, it's like, well, wait a second, that's not gonna change my stutter. You know, is it maybe? Yeah.

Michael Boyle: Yeah. Th th so that's a really, really interesting, interesting point.

Michael Boyle: And I'm glad that you brought that up because I was thinking I should clarify that as well. So yeah. Um, the whole idea about severity, um, you know, The interesting thing about that is that our field really doesn't even have a good agreement about what severity is. And that's just the, um, unpleasant truth.

Michael Boyle: You have some people who say that the term severity is only the physical disruption, like a tool, like for example, the stuttering severity and. Instrument. Well, it's got the term severity right there in the title, but it really a part of that score that you get to measure severity is really only the physical characteristics.

Michael Boyle: It's the frequency of stuttering, the duration of how long it is and the sand.

Uri Schneider: And if I may add the other dimension of limitation there, which is the gold standard. So most people that are doing a stuttering assessment were trained to use the SSI. And in some places it's still might have a purpose, but a as Michael said, it's looking at the dimension of physical.

Uri Schneider: Moments of a stutter, measuring their frequency and types and so on. But also it's only a snapshot. It's a snapshot of that moment of that sample. And given the variability of stuttering, you know, that's another limitation just to consider as well. Right. Right. Yeah.

Michael Boyle: Yeah. It's it is, uh, I agree. It's one of the most widely used, it's very common.

Michael Boyle: You see, everybody has it and it does serve a really good purpose. I think it has a lot of benefits to it. Um, but I think the risk is that if you just look at that and you stop there and I think some people don't go beyond it and they state assume, I think incorrectly that the severity of a person's speech disruption.

Michael Boyle: Is a proxy for the level of disability that they have. So they can basically just look at that and that will tell them all they need to know. Um, and it's really not the case. And so, uh, like here's one example, um, and I could use it from my own personal experience. Maybe. I, when I grew up, I was pretty covert.

Michael Boyle: A lot of the time I tried to hide stuttering, uh, and I had teachers, you didn't know that I stuttered, but I was really struggling because I was word switching and concealing and things like that. A lot of people who stutter do that. Um, and so to me, it was. I knew that the problem was not just the surface level behavior.

Michael Boyle: Cause I ha I felt like I had a really big problem, but nobody else really knew about it. So there was a, uh, a disconnect there between if you did a speech sample on me, you wouldn't really think. I had a problem, but I felt like I had a big problem because I was avoiding, I was fearful of it. So that's just my own personal example, but I know many people who study, I'll just add, I'll just add

Uri Schneider: one other example.

Uri Schneider: And since you're from Jersey, it seems to fit. So this person from New Jersey came and drove quite a distance. Cause mine, Claire is New Jersey, but it's not exactly just over the charter Washington bridge. Uh, so someone came from deep in Jersey and they came to the office in Manhattan and the mom said, look, this is our fourth.

Uri Schneider: Appointment coming to someone to help us understand what's going on with the stuttering. Now, each one of them, when we showed up for the evaluation, my son didn't stutter. So they told me your son doesn't stutter. I, you know, maybe, maybe you're making it up. Maybe your son is, is, is making it up. Uh, so I'm here either for you to tell me for the last time, you know, with total certainty, all I want is certainty.

Uri Schneider: Either. Tell me they're crazy. And I know what I'm talking about. And I trust my son when he says he's living with. This, um, ducking and dodging and managing and, and just like constantly on the editing mode of his speech communication, but on the surface. The water seemed calm, but that's a thing like that's justifiably a thing that maybe we can support and maybe we can give it some air and maybe we can even think of some ways that could be supportive and helpful going forward.

Uri Schneider: Or tell me indeed, we are, we are crazy and we're making this up and this is not in the ballpark of anything that a speech therapist should be talking about. So just to amplify what you're saying, this, this young man would have scored just beautifully on the SSI its measurement of severity would have shown.

Uri Schneider: Not only is it mild. He doesn't even have a stutter. He didn't demonstrate any of that behavior and yeah.

Michael Boyle: Yeah. Right. And, and, and that's a problem, right? So like that is, I think some people would, uh, would see that and think, well, he's not stuttering. So what's the problem. And there is a problem because if you, you know, our experience is in large part internal.

Michael Boyle: And so if you are fearful, If you're anxious, uh, if you are limiting yourself in life, based on the fear of stuttering, even if you don't stutter very much, that's a big problem. Um, and so, uh, and then on the other side of the continuum, you have people who stutter pretty openly who have, uh, a way of dealing with it and coping with it, where they.

Michael Boyle: Feel okay about it. And it doesn't really stop them from doing what they want to do. So the idea of only now I'm not saying that the physical disruption isn't relevant. I think it absolutely is relevant as a part of the picture, but it's not the whole picture. And if you don't know about the other side of it, that's more internal, the stigma, the anxiety, the avoidance, the fear.

Michael Boyle: Um, you're not going to be as effective as you could be. As a clinician. I just think that's a really clear thing right now that if you, you can still help people maybe, but if you don't get that other part of that, you're not going to be as good as you could be. I'm just going to augment

Uri Schneider: one thing you said there to add as a clinician or as a parent or as a teacher or as an ally.

Uri Schneider: Like if you think that the entire supportive experience and understanding, and this will go, I think, lead into where we're going, you know, is all about alleviating the physical presentation of this thing. You might have the best intentions, but that's not going to bring you to the promised land. And you've got to find a way to appreciate and touch and give air and address in whatever way seems.

Uri Schneider: Right. The other side, the invisible side of the thoughts and the feelings, everything related to beneath the iceberg.

Michael Boyle: Absolutely. Hmm. Yeah. I, I think that's, that's really critical. And by the way, um, I was talking a bit about the, the research earlier and looking at if uncertainty and things like that were a predictor of communication and all that.

Michael Boyle: And so the important thing is there that I can, that I, um, Would control for the physical speech disruption. So, I mean, if you ask people, how severe is your stuttering at a surface level, you know, basis, and you control for that, you're looking at, would uncertainty be helpful in explaining why some people communicate more and some don't why some feel better and some worse, even beyond what's accounted for by their physical severity.

Michael Boyle: So in other words, we kind of take that into account. And I think that's an important argument because there are some people in our field, you know, prominent people, theorist researchers, educators, who really kind of downplay that stuff and they make the argument. Basically that look, if you treat the stuttering, all this other stuff will fall into place.

Michael Boyle: And so why worry about it? And I think, you know, that might be true to a certain extent for some people, but for some people, I don't think that's true for some clients who stutter. I think you do need to directly address thoughts and feelings and social aspects that you can't just say. If we make them more fluent, therefore, you know, then they will.

Michael Boyle: Not have any barriers anymore. I just, it's not the case. It's just not true.

Uri Schneider: That is that that's pretty powerful. And there are people, listen, we got Belgium, we got Argentina, we got some Australians here. And, and a lot of people from the UK that are asking a lot of great questions and responding here, drop your, like, stop your questions.

Uri Schneider: But what Michael just said, I think is very important. I would you agree with this, Mike? I often say. That it's often surprising to people when people that are covert that have a more mild physical presentation sometimes have more going on. Then people who have a more pronounced physical, uh, behavioral experience where they're stuttering more consistently, more out and loud, uh, whether they want to, or not.

Uri Schneider: I'm not talking about people that are letting it out. I'm talking about people that couldn't hide it. If they save the world for, you know, that those people, that it's more, um, let's say more severe in its physical presentation, it's stronger. And it's physical presentation. Those folks sometimes. Um, it becomes that's the way it is.

Uri Schneider: And, and for people to have a more mild physical presentation, sometimes there's even a more insidious, uh, tricky path of relating to it because there's a way of feeling like maybe it will be there, maybe it won't. And like that, that. That dance of uncertainty and variability, but what you said, are there any studies that have looked at that controlled for severity and looked at the variability of people let's say who have similar sounding stutters?

Uri Schneider: So the physical stutter is similar, whether it be measured as mild or severe, and within that group controlling for that. And then looking at the variability of the, or the range of different experiences of

Michael Boyle: those folks. Yeah. I mean, so I've, I've done a few studies on that with some of my students as well.

Michael Boyle: There's one in 2015 and one in 2018. Um, and I'm sure that there are many other, or some others that I'm blanking on right now, but I know. Personally from my own work that I, I tried to control for the severity variables. I'm pretty sure others have done that as well. Um, I can imagine like the, the group in Australia, I think, uh, um, Ashley, Craig and colleagues have done studies like this where I'm, I'm pretty sure they take into account the severity, but they look at the psychosocial variables, but I mean, in some of the findings I've I personally seen so far things like self-esteem.

Michael Boyle: So how a person feels about themselves globally, or are they a person of worth or are they on an equal plane with other people? So self-esteem, self-efficacy their feeling of, I can handle uncertainty. I can handle stressors if they pop up, uh, and social support, they feel like they have social support, friends, families, significant others.

Michael Boyle: Those three factors are predictors of quality of life. And communicative PR participation above and beyond. What's the counted for by just the person's physical stuttering severity. Um, I did measure severity through self-report. I didn't actually get like the percentage of sociable stuttered. Um, so there's a little bit of a caveat there, but the idea is that, um, the evidence so far seems to suggest that there's actual like statistical evidence to show that these are factors that.

Michael Boyle: That that, um, can help explain why some people participate more and some people don't, some people have better wellbeing than others that go beyond the physical severity.

Uri Schneider: Unbelievable. So I gotta weave in there's some people here that were insulted. I didn't mention Sweden. Sweden is live here. Uh, Madeline homeless quests.

Uri Schneider: I hope I didn't picture that too much. Um, and Trudy Stewart from the UK had a question, but first I just want to shout out for Gareth. Gareth had a great line here. He says any article that has Boyle and Gable on it is definitely worth a read. So, um, a lot of respect and admiration for you and for, um, the question from, uh, who Trudy, and I think this is interesting related to what you're saying, and you could take it any which way you want.

Uri Schneider: The three variables you just talked about that are so important above and beyond physical severity in terms of indicators self-esteem self-efficacy and social support, uh, what are some ways that individuals, families, teachers, mentors, allies, therapists can, can. Boost strengthen those muscles, beef, those things up.

Uri Schneider: And what, what, if any, what Trudy was asking is when we look at like the outside world and societal shifts versus, uh, in terms of how those things impede, impose themselves versus, uh, support those things. So we have movements of, let's say pride, stuttering, pride, stammering pride, uh, in what way did those things, um, Either completely make things possible, make things more easily possible and accessible, or actually are wonderful trends, but actually have very little pairing.

Uri Schneider: In other words, people can still fall into the same pits they did before without, you know, individual attention. That's something I'm interested in in terms of, again, like I said, the tunes of parameters of looking at society and culture as a whole, and then also zeroing in on the individual and then going back and forth and thinking about how we can.

Uri Schneider: Bring the whole world forward and also think about no matter what's going on in the world. And that's really what you were saying. I think in self efficacy, no matter what's going on around you, no matter what you're going through. And, and very much, you know, mindfulness type thinking, you know, this is what is, this is a moment and how do I, how do I go through this?

Uri Schneider: And how do I grow through this? No matter what. Yeah. Right.

Michael Boyle: Yeah. So those are some big questions, uh, to talk about how to enhance self-esteem self-efficacy social support. I mean, man, there's a lot of ways that you could do that. I think that's the art of being a good therapist is finding ways of doing that.

Michael Boyle: And there's certainly a lot of resources out there that that can help you. And a lot of foundations and companies that make a lot of really good resources. Um, did

Uri Schneider: you say art. I just wanted to focus on that. Did you say art of being a good therapist? Right, because I think again, and this is this interplay of like the research provides knowledge and data and supports certain directions.

Uri Schneider: But if you take information and you throw it at people that tends not to be transformative as much, although you could, you could talk about this with your uncertainty stuff, but there's certain things that information opens up a whole world for people. But often it's how you deliver it at the right time, in the right way.

Uri Schneider: So the research validates that these things matter, how do you help an individual strengthen these muscles? Is something of an art or it's something that needs to be exercised and practiced, and it deserves apprenticeship and mentorship and community. And I just wanted to talk that science and art, I think in therapy and Manning is one of my favorite authors on the topic.

Uri Schneider: You know, talking about, we can't just be mechanics and a car shop. We've got to be human. So I just love that word that you use. You, you just spontaneously threw it in there. And again, I just want it to blow it out.

Michael Boyle: Yeah, sure. I mean, I was, I think Manning is that as a great person to bring up with this because he has written a lot about, um, you know, there's no real cookbook there's if you know, principles though, that's important.

Michael Boyle: So, you know, principles of understanding, stuttering, knowing what's important, uh, having a rapport with the client and working with them, and then you, you fill in the gaps about exactly what to do, uh, because everybody's different. Some approaches might work for one person that don't work for somebody else, even though you're, you're working on the same principle, how you go about doing it is going to be more or less effective depending on the client that you have.

Michael Boyle: So, yeah, I mean, there's a lot of, that's probably a whole other podcast that, you know, in terms of talking about ways of. Uh, boosting all of those things, but I think that's what a lot of clinicians are probably trying to do in therapy, working with the families, for example, getting the families on board with really understanding stuttering, uh, you know, bringing in some of the cognitive therapy, perhaps to improve self-esteem or to improve self efficacy for, for, uh, for self-efficacy for me, for example, one of the things that was really important for me was learning about stuttering modification and, um, Because my whole life up to my early twenties was very fluency focused.

Michael Boyle: And it's kind of like that, that is, for me, it was limited because I was already hiding it. So I was already pretty fluent on the surface. I didn't really need fluency. I needed, how do you handle stuttering when it happens? And once you get that, you have some self-advocacy for look, I can see.

Michael Boyle: Yeah, it stuck and I can. I don't have to panic. I can get out of it in a way that's easy. It's not going to be the end of the world. I can handle it. And once you have that, you're not as afraid and you're willing to enter more situations and you have more self ethicacy that you can handle whatever is thrown at you.

Michael Boyle: So, I mean, I could talk for hours about this, but those are just a few examples of, of what you could do. Um, and then for the pride aspect, that's really interesting question. My hope is that. Society overall changes, you know, like why, why don't we hear more people who stutter on TV or radio or, you know, uh, why, why are, why aren't they more visible, um, and actually S stuttering as well.

Michael Boyle: That's beginning to change a little bit now with president Biden. Uh, but for a long time, it's basically like, nobody's really talking about it and nobody's allowed to stutter openly. Um, so hopefully that changes and when it. Continues to, I th I think it is changing and hopefully it gets better over time and, you know, younger kids growing up, don't, don't have to feel a level of shame and stigma that I think a lot of the previous generations have that being said, I think individual therapy obviously can be hugely important because a person might be struggling with it, have their own issues.

Michael Boyle: Want to get specialized help. And so I think, you know, the podcasts and the online self-help groups and all that is great, but obviously there's a really important place for individualized therapy that can really tailor things to that specific person if they're struggling with it.

Uri Schneider: Yeah. I think it's a, as you said, at the topic in and of itself, and certainly it's only, it's only going to be better, not only for people who stutter and for families, but for the world, if we have more representation, And as you said, you know, mainstream popular culture and media, and I think there's some things happening in the UK that might be things we can learn from here in North America, but, uh, shout out to our friends in the UK.

Uri Schneider: But, uh, that being said, what I've witnessed, just so people should know is that even if the world was to shift, uh, their individual families to have their own subculture, There are individual communities that have been on subculture and they're individuals that even with the most supportive family and supportive community and supportive world around them, they still are in this world of self rejection of fear of letting it out of being themselves.

Uri Schneider: And on the flip side, you have people in places where they have no family support the community. And the culture of that part of the world is totally closed and doesn't really create any sort of opening for them. And yet. They have this fierce courage to push through. Do you have any, either anecdotes or thoughts, maybe frame it this way.

Uri Schneider: I thought of how to frame it. Uh, clinician's gone wild where people have taken research and just applied it in the most baffling way. And, and, and it concerns you to see it applied in that way. And then on the other hand, maybe an anecdote of, I was really glad to hear how that clinician, so some of what I've been working on and brought it into life in a wholesome way.

Uri Schneider: Uh, so I don't know. I think that relates to this because we come up with. Assumptions. Whereas you said as much as it said, it needs to be set again, stuttering therapy is a cookbook. Parenting is not a cookbook. Um, you know, we need to learn as we go and, and respond to the facts and data on the ground and the person in front of us and ourselves where we're coming into things.

Uri Schneider: It's a human encounter and it's gotta be dynamic in that way. I think the biggest mistakes are when people take cookbooks or mechanical solutions for any problem and just throw it on every. Car that comes into the shop. Um, so I think I'm interested, fascinated, invested this whole transcending stuttering SLP cohort.

Uri Schneider: If anyone's interested, drop a comment or whatever, we can talk about that, but helping clinicians as a community learn and talk about how do we do this, but, but from where you stand, what are some of your, uh, horror stories or, or, you know, exciting parts of how it's being applied in, in, in dynamic human ways, because the research is undeniable.

Uri Schneider: How it's applied is often somewhat, somewhat surprising to me. How people misapply things. And yet I think it's helpful to have those conversations and highlight both the good and the wild.

Michael Boyle: Right, right. Um, well that, that's it how you want. Yeah, sure. I guess for how the, the whole clinicians gone gone, wild theme.

Michael Boyle: Um, I guess there are two ways to go with that. One would be that they ignore the evidence about the importance of psychosocial factors or they don't ignore it, but they just don't. Do it because they feel like they can't or they don't know how. Um, and so the joke when I teach my graduate courses is that if you look at 90 whatever percent of school IDPs, or even in university clinics, sometimes you see, okay, the client stutters, what are the goals?

Michael Boyle: Right. Slow rate, easy onset. And you could just, you know, put your money on it. Right. Uh, that, that's what you're, you're going to see without really thinking, okay. Are these things really appropriate for the client? And even if they are, is this the best thing to start with? Um, so that would be one side of it where it's just kind of like, even if a person knows the value of these variables, they're not addressing.

Michael Boyle: Them, uh, because they think that, okay, if I address the fluency, everything else will fall into place. And we know for a lot of people, that's just not true. The, the other side of it, um, is they go so heavy on the acceptance part. That they give the client no, maybe tools to really manage it, or they just have this mentality of, Oh, it's okay.

Michael Boyle: To stutter. Just accept it, you know? Um, um, it'll be fine. Uh, I don't know how many clinicians actually do it that way, but my fear is, Oh, they do. They do they're

Uri Schneider: out there too. And I think nobody talks about that. So I'd love for, if you could just riff on that for another moment, being a person who stutters being a researcher.

Uri Schneider: Pushing and innovating and, and contributing literature to the value, importance, and significance of not ignoring the psychosocial, emotional sides of the stuttering experience and how we relate to it. Talking about seeing and feeling like pleasure has gone wild sometimes going all in 110% on that and not providing the person who's asking for some way of managing the physical experience.

Uri Schneider: I would love to hear your yeah. And

Michael Boyle: that physical part is important. It is a strong correlate of a lot of those mental factors. Um, a person's perception of how severe their stuttering is, is important with that. It's not the only thing, but it is important. And so, um, yeah, I, I, I sometimes think that, uh, just telling, you know, because of course it's overly simplistic to just tell a young child, for example, who stutters.

Michael Boyle: Oh, it's okay. Uh, And just kind of expecting them to be okay with it without actually giving them some perhaps strategies for how they could make things easier. And, um, not everybody is going to want to do that or need that. But I think we shouldn't assume that we should just feel comfortable telling.

Michael Boyle: You know, people who stuttered that, you know, it's okay. And just accept it because after all, very often, if they're in therapy, especially if they're a bit older, they want to be there because they're really struggling with their speech. So I kind of, uh, the other thing is there's a lot of discussion in our society nowadays about privilege and who has certain societal privileges.

Michael Boyle: And I worry sometimes that the researchers and theorists who, uh, Uh, you know, maybe they have jobs that are more amenable to being okay with stuttering. You know, some, some people are in jobs or in, or in situations where they need to find ways to speak more easily. And that's really important to them.

Michael Boyle: And we can't downplay that. Um, just because we don't have the same. Sort of understanding environment or demands, uh, on us. It doesn't mean other people don't have those. So I think we need to be humble in terms of realizing that it's not a one size fits all approach. So yeah, I think you're going to

Uri Schneider: interject parentheses that I got shivers when you said that, bringing that idea of privilege of how those of us that are in a place where we have that position to kind of lean in with openness and acceptance and pride.

Uri Schneider: And we have to recognize that the person on the other side might not have that same context in which they are living in every situation, every relationship. And to honor that with humility and the other person that brought that out, that I was surprised. And I think a lot of people were surprised is, um, Barry yeoman in my chat with him, he talked about the same thing, you know, uh, as a person who stutters in a prison who has been putting a very.

Uri Schneider: Appropriate and much needed emphasis on the psychosocial, emotional side. Uh, the recognition and respect that certain people at different times deserve the attention they're asking for, deserve the support they're asking for. And that that's valid as well. Not in, not in exclusivity, but in, in, in partnership with, uh, looking at the other side of it.

Michael Boyle: Absolutely. And I think it gets back to giving the client options, right? We want to give them options. And the more options we have about how to handle things, and maybe it's not the same option all the time. Like maybe they want to be pretty open about stuttering a lot, like with their friends, but maybe if they have a, a job interview or a speech coming up, they really want to learn how to regulate their speech.

Michael Boyle: And that's completely understandable. Um, and, uh, Yeah. So that, that I think is important is just to give people options. So, um, and then they could use those options as they see fit. But I wouldn't want to rule anything out. Definitely. Yeah.

Uri Schneider: Speaking of options, do we have an option of scheduling around too?

Uri Schneider: I'll leave. You don't have the answer right now, but we'll, we'll put that on the table because there's so much we can do, but I want to give you the option. Cause I know we don't have an option on making sure that we end on the heart. Stop, but I want to give you the option of what, what last nugget you would like to make sure to share, because this has been extremely on a personal basis on a personal level.

Uri Schneider: I've. Enjoyed and learned a lot. And there's comments coming in from around the world, how much others have. So your time has been a good investment. Uh, would you share one more nugget to leave us off for this morning and then hopefully join us again, but we'll post this and I'll ask Michael to send me any and all links that he feels might be, uh, of his articles of his research, of other things that he would find helpful.

Uri Schneider: We'll post that to the blog. So that's Schneider speech.com/our blog and the free emails for people who stutter for speech therapist, you can get those@schneiderspeech.com slash TSA. Uh, but final thoughts just to get home this

Michael Boyle: morning. Sure. Um, so, uh, first of all, I'd be happy to do a part two. Uh, I apologize for having to leave on the.here.

Michael Boyle: Um, but yes, the happy to come back and then, um, uh, final nugget, I guess if I can integrate. Uh, a few of the things that we've been talking about, I would say, um, you know, cause we were just discussing the idea of not going too far to either extreme in terms of like all in, on one or the other, all about fluency or all about.

Michael Boyle: Oh, just accept. It's fine. Um, the idea that, uh, what, what's the goal, the goal of the person to. Increase their wellbeing, their quality of life. And they're communicative. Functioning and participation, that's the goal. So any way that we can get there is a good thing and we want more options rather than, than less.

Michael Boyle: And so I think that if, uh, you know, if somebody obviously wants to regulate their speech and have some more control over it in certain situations, that's great. And we can certainly teach them that. The one thing I would keep in mind though, is. Um, to try to balance that with your okay, as a person who stutters as well.

Michael Boyle: Now, how do you balance those? I think one aspect is to make it clear that, you know, these are things that you can use if you feel like it's helpful to you, uh, depending on the situation, um, But the goal in my mind should not necessarily be to the person who stutters fit into like a neat little tidy box that makes them look and sound just like everybody else.

Michael Boyle: I, I don't, I mean, maybe someday they'll, there'll be a pill that maybe can do that, but right now I don't. I don't really see that as being a workable solution. And so I think to balance the two, the idea is, look, you can learn things about how to speak differently, regulate things, but, um, those can be helpful things for you, but the identity of a person who stutters is not anything shameful, it's not anything to hide.

Michael Boyle: It's not anything to apologize for. You can have that identity and be proud of it. And live with it very, very well while still at the same time saying, you know, there are some things that I could do if I want to, to regulate this and, and to make changes and they're not contradictory, they can be, they can be compatible.

Michael Boyle: Um, and so I think that maybe is a good message to leave it on. Unbelievable

Uri Schneider: and a very short wrap up. Just, I want to thank you. I want to thank whoever made this possible for you to carve out this time. I think the message of humility and at the same time, informing ourselves to the max and really putting a primacy on choice and being driven as what Manning teaches us by principles and by values will always serve us well and thrusting any one size fits all.

Uri Schneider: Even inadvertently. With the best intentions, uh, is never going to be the best way to treat everybody. Uh, so I just want to thank you, Michael, and, uh, many, many thanks for this.

Michael Boyle: Well, thanks again, Gary, for the invitation. I had a good time and I'd be happy to come back anytime. Thanks a lot. Looking forward.

 
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