Do We Speak Our Minds Enough? – Pamela Mertz

About the Author: Pamela Mertz is a person who stutters who is active in the global stuttering community. She is on the Board of Directors of the National Stuttering Association in the USA and serves as Employment Advocacy and Military Support team leader. She also serves as Secretary of the International Stuttering Association. She has been a Stutter Social
host for 5 years, and also has been writing about stuttering in a blog for 9 years. She hosts a unique podcast called Women Who Stutter: Our Stories, where she has interviewed women from all across the USA and 37 other countries, giving women who stutter, who are in the minority in the stuttering community, a space to speak their mind and share their story. Pam also manages to squeeze in time for a full time job as an Outreach Specialist in a vocational high school.

The theme of “Speak Your Mind” is perfect for encouraging and empowering people who stutter to use their voice and say what they want, no matter how that voice sounds or how long it takes to get the words out. For many people who stutter, we have often felt voiceless and unworthy of being heard. That was definitely true for me for a long time, too long, in fact. I have given a lot of thought lately to a different, compelling, question: “Do we speak our minds enough?” Do we speak up enough even when the conversation is uncomfortable? Listen and share your thoughts with me. I’d love to engage in dialogue about this.

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Comments

Do We Speak Our Minds Enough? – Pamela Mertz — 36 Comments

  1. Hi Pam, very interesting presentation. I have to agree with you we don’t
    talk enough about this. We have to be careful in our approach, however I can remember one leading light at a BSA conference trying to make a case that severe overt stutterers had a harder time than we quieter covert stutterers. He was left in no doubt he was on very thin ground. So greater understanding would go a long way.

    • Hey John, thanks for watching and pondering this with me. I agree, it’s all in how we approach it. It’s not a contest – you stutter more, so you must struggle more and vice versa. To me, it’s all about simply acknowledging that there is a lot of difference within our very own community and we cannot assume anything. Understanding different perspectives really would go a long way in “getting it” and reducing some of the stigma maybe that all of us feel at one time or another.

  2. Hi Pam,

    It’s certainly very brave to speak about this topic. Yes, we should have conversations to talk about the different experiences we have. Of course we should!

    The struggle is certainly variable. I know PWS who struggle profoundly, and who feel not only left out, but abandoned, by the Acceptance movement. These people no longer feel comfortable attending NSA because they feel that if you do not Accept your stutter, then you are somehow second class, and weird. I must emphasize that this is not the way NSA promotes itself, but only the general vibe that some people pick up. This experience of not being good enough in your own community is awful. We who can Accept ourselves, we who have found a way to struggle less, should be more empathetic of those who cannot, who have not found a way.

    I am often horrified, yes, Horrified, by responses by prominent PWS on forums such as Stuttering Community, at the lack of empathy for PWS expressing their fears and their pain.

    So, Yes, we need to speak about this. We need to recognize the variance in our community, and we who manage our lives well need to get fully engaged in supporting those who are not able to.

    Thank you, Pam, for your message.

    • Thank you so much Hanan for your support. I agree and obviously feel strongly that we do have a wide spectrum in our community – not only speech and struggle-wise, but also, as you note, acceptance wise. Many people who stutter do not want to just accept it – they want to change it and work to obtain more fluency.
      And for some, that is profoundly difficult and may take their whole life time.

      It greatly saddens me that there are some who struggle more profoundly or cannot hide their stuttering do not come to NSA events because they don’t feel welcome. That must change. We, as a community, need to get over ourselves and recognize and appreciate all the different lens that people who stutter experience stuttering. We must have these conversations more often and not focus solely on those people who stutter very fluently, if you will. Those that stutter “really well” need to be heard, valued and included.

      I too see some horrifying responses in some of the Facebook forums – people don’t check their compassion button before hitting send. And that sends horrible messages- that defeat the whole purpose of having these support groups.

      It happens in Stutter Social hangouts too. The more fluent stutterers tend to monopolize conversations and don’t make room for those for whom the struggle is more intense. And I’ve seen people blatantly diminish other peoples stories. As a host, I recently “called someone out” for doing that and got feedback that I was taking it too personally. Well, we have to take it personally. We who stutter stand for everyone who stutters and need to “gently challenge” when someone oversteps or disrespects someone else’s experience.

      That’s not what it’s about, is it? We must speak up and talk about the harder things in our community or we’ll never truly be inclusive.

  3. Hi Pam, great topic and congrats on the well-made video. I agree this is a taboo topic, that I’ve also heard brought up in Stutter Social Hangouts.

    I think it’s pretty clear that more severe stutterers don’t participate as much in Stutter Social. Inadvertent or not, I’m not sure if they feel welcome. I think when the more fluent PWS’s get going in a conversation, perhaps engaging in light conversation about something they have in common, it tends to make others feel less inclined to participate. I can only speak for myself here, but in my mind I’m there to talk about stuttering and whatever relates to that, not engage in light banter about past shared events, etc. Perhaps these other conversations could be had on a one-on-one basis over the phone.
    Possibly each person’s time could be clocked and limited to a certain amount.

    On the flip side, I know the message is always you don’t have to participate if you don’t want to, but I’m not sure if that’s helpful either. I suggest that after one or two hangouts, after the new entrant has experienced what it’s like, they should be required to participate. The purpose isn’t to punish, but to make known everyone should be productive when joining the hangout. After all it is one of the least harmless ways to get real-world experience having conversations, while talking about stuttering.

    Employing these two strategies may help even out the time participants speak.

    Full disclosure maybe I’m not one to assert my opinion, since my participation has dropped significantly over the past year. Oh well, life happens so I’ll still hit “send” here and wait for a response. Hopefully I’ll see you again soon in a hangout!

    • Hey Ian – so great to hear from you. I agree somewhat with your thought on the Stutter Social
      hangouts. There needs to be a balance and everyone who wants to talk needs to be given that opportunity. It does seem at times that the more mild and moderate people tend to monopolize a good deal of the conversations.

      As a host, I always try to get everyone to participate. I’m sure you’ve seen me even call on people specifically and invite them to share. Not everyone wants to though. And that’s Ok. These need to be stress free, comfortable forums where all feel welcome. Some are content with just listening . If, after inviting someone to speak and they choose not to, I just respect that and move on. So this is where I will
      disagree with you – I don’t think “requiring” anyone to have to speak will help. Some people who come in just to listen are getting a lot out of it. Forcing anyone, before they’re ready, or at all, may not be productive and could be the reason a person doesn’t come back. That’s a real shame.

      I’ve dropped down to hosting just once per month. My next hosting slot will be Sunday 10/28. Hope to see you there.

  4. Sometimes speaking your mind in the stuttering arena can be a minefield! Loved your piece here!

    So I have spoken my mind now and then to put this myth to bed…. PWS are ‘great listeners’…errr nope!! Many PWS are so focused on what they want to say and when they are going to say it that they haven’t listened to a word you have been saying! The idea that we are all great listeners in the stuttering community is rather amusing to me! It is also a real challenge once you gain confidence in your speech, I know I had to really focus on listening to others, not to talk and talk!

    • Hey Mandy,

      Indeed, it can definitely be a “minefield” but if we don’t, who will? The hard conversations really need to happen.

      And you’re right – when I was obsessively trying (and believing I was successful at it) to hide my stuttering, I sure wasn’t listening to anything but the chatter in my head. I rehearsed all the time what I was going to say next and was always so focused on it being perfectly fluent, I almost never was fully listening, and therefore, engaged in what the other person was saying. I sometimes responded in wacky ways.

      I didn’t become an “excellent listener” until I stopped doing all of that. It’s so much easier now.

      Thanks for weighing in. I hope others do too.

    • Mandy and Pam,

      This is a great point, about the myth of PWS being great listeners. I must confess that, for me, my challenge once I learned about stuttering and was beyond simply surviving, was to listen to other PWS without telling them about my experience and what helped me. Sometimes that’s good, but I find that it’s often more important for to simply listen, to be empathetic, and to be there for the other person.

      This is only my feeling. What do think about this?

      Hanan

      • Hi Hanan,

        I totally agree with your thought, that’s mostly the reason I asked the question in my video. I don’t think we take enough time to really and fully listen to other people who stutter. Maybe because we’re a bit intimidated by someone’s more evidently difficult struggle, maybe we don’t know what to say, or maybe we feel a little guilty as I also alluded to, in a different way, in my video.

        That’s one of the things I h ave found with my podcasts – they have genuinely become a place for people to share their story and I listen (mostly! I do engage in a little back and forth.) I listen, which for years when I was so fiercely covert, I wasn’t’ very good at. People can tell when we are listening and when we’re not. Good points.

        -Pam

        • Hi all,
          What a good point! I do not identify as a PWS, but I have definitely had the experience of being in a group setting where I knew I would be called on to speak and not hearing a word anyone shared before I said my part. The anxiety was overwhelming! It left me feeling isolated as I often didn’t know what was being discussed one I “tuned in” again.

          I had not thought about how that same anxiety that is felt before speaking can also be felt by the listener. I can see how that anxiety would keep the listener from really hearing the response of the other person, just as it keeps the speaker from hearing the comments of those around them. This added anxiety on the part of the speaker and the listener would lead to very little meaningful conversation!

          Thanks for the thought provoking post!
          -Anna Park

  5. Absolutely! I’ve always been mindful that on my podcast, book, and comics everything I talk/draw about can be useful to PWS of all stuttering volumes. And other demographics — gender, ethnic background, etc. Each and every one of us has unique experiences. Period. What works for me (full tilt acceptance instead of fluency) may not work for someone else (for example, an immigrant looking for work who may want fluency because he or she already has to worry about speaking English and having enough work experience in the adopted country).

    Maybe it’s a matter of us moderate stutterers who are the frequent posters and presenters at conferences. The spotlight is continually on us.

    Your story about the handshaking brought back a fond memory of my first stuttering conference. Both of us didn’t know if we should let go of our hands during or after the handshake! So there we were, standing there, holding hands, during a profound block. Awkward 🙂 But a funny experience caused by a shared speech impediment. Regardless of the difference in stuttering volume.

    Glad you brought this up, Pam!

    • Daniele,

      Thanks so much for watching and taking time to comment and leave feedback. I am really glad I brought this up too, because I truly believe we are sort of “missing the boat” when we fail in our community to really take time to acknowledge and honor the very different experiences of stuttering that everyone has. Those whose stuttering is more physically pronounced, with both what is uttered and what is left unsaid due to profound blocking, absolutely have a different experience than those who are more mild or moderate.

      And I’m not making comparisons here. We all know this isn’t a contest, like I alluded to in a previous comment. There are plenty of people who struggle markedly and are totally OK with it. In fact, I actually kind of envy them in a way, as I still have my own unexpected moments of shame. People who covertly stutter, with almost no detectable signs of physical struggle, may have internalized conflict and shame or may spend so much time obsessing about their speech that they are completely miserable all of the time. Plus extremely worried about being “exposed” at any time. I know – that was me for years – and it’s far easier now to just stutter.

      This has been on my mind for a while. How in the world can we expect the fluent world to better understand stuttering with its impact and stigma, if we don’t talk about that very thing more in our own community?

      And I agree with you with your point that people who are “spotlighted more” or offer to run the workshops, are those with an easier time. We need to see and understand the perspective from all of the lenses. And find ways to promote more opportunities for those who sometimes feel “left out” or even unwelcome to feel more included in the communities.

      Like you, I really embrace having very diverse guests on my podcasts. I always hope someone is really listening.

      And by the way, I love your phrase “stuttering volume.”

      -Pam

  6. Good points, Pam. As with most disorders, stuttering trends more toward the mild than the profound and thus a lot of therapy, support, and other services are geared in that direction. That’s not always good. I can talk about, say, the benefits of open stuttering, but when my listener is someone who is both very self-conscious and very severe, do I really understand how difficult that will be for him? I can talk about my own struggles and embarrassments and sound like some sort of expert on the stuttering experience when what I went through may not be 1% of what someone else faced.

  7. Hi Pamela,
    Thank you for sharing this video. Having recently participated in the NWCFD-IISC (as you already know from your comment on our piece), I’m learning more about how perspective and education are critical pieces in successful outcomes for people who stutter, whether that’s in the context of therapy or outside of it. I appreciated your honesty in talking openly about what it’s like to stutter and interact with other people who stutter. There’s a lot of variability in people who stutter, and I hope that this piece sparks more productive conversations and problem-solving in the stuttering (and stuttering allies) community.

  8. Hey Pam, I really enjoyed your video and you’re very courageous to address this topic and it’s absolutely something that we should address in therapy. Participating in different conversations in the stuttering community will not only create greater appreciation for other’s experiences with stuttering, but it will also create awareness for the different perspectives that others will have about their experiences with stuttering. However, this can be easier said than done due to being nervous to open up to others, especially for the first time. Would you mind sharing with me how you initially felt comfortable opening up about your experience with stuttering and how you were able to use your voice as empowerment for others?

    • Ha! Several people have said I am very courageous to address this topic. My thought on that: why is it courageous? Is it because we indeed don’t do it enough? Are we afraid to have these harder conversations? Do we worry we won’t know what to say or how to react when someone is blocking for a minute or longer on their name or a word?

      I don’t think this should be so courageous – I’d really like to see it be commonplace.

      I know I am much more willing to listen after having two occasions where I felt so uncomfortable listening to the other speaker and in both cases, had that thought, thank goodness I am not that severe, and then the sudden and immediate guilt. It was in those moments that I really felt what the other may be feeling, all the time, and I was only feeling it for a fleeting second.

      I think everyone can be nervous to open up to someone for the first time. What helped me to finally start doing that was the realization that I wasn’t serving anyone by shrinking away and not speaking up. I had things to say, important things, and I reached a point where I realized that and that I wouldn’t be struck by lightening or sucked under by a sinkhole if I stuttered when I spoke. That was so liberating the first time, I actually just wanted to keep going and talking and letting the real Pam out, after many, many years of being fiercely covert.

      As Marianne Williamson said in her famous quote (paraphrasing here): “when we allow ourselves to shine and be liberated, we unconsciously allow others around us to do the same.” It’s contagious!!

      Thanks for the good questions.

  9. Hi Pamela!

    I am a graduate student in speech-language pathology, so I have been learning a lot about stuttering, including assessment and intervention. You mentioned that PWS often feel “voiceless.” This stood out to me because one of our department t-shirts reads, “Everyone deserves a voice.” This is so very important. As you discussed, not only is it important to have a voice, but it is also important to speak your mind, which takes courage. As a future SLP, I want to be able to provide the best help and intervention for all individuals, including building up their confidence. I admire your courage to open this up for discussion. It makes me curious to know: Did you have any experiences with an SLP that helped boost your confidence for interactions with others? And on the other end, was there anything an SLP did or said that was particularly unhelpful to you? I am so excited to help PWS find their voices and be unafraid to use them. I would love to hear your thoughts on this!

    I enjoyed your video. Thank you!
    Megan

    • Hi Megan
      Thanks for watching and the good questions.

      I had some poor experiences with therapy unfortunately which really drove me to leaving after a relatively short time and figuring out things on my own along with finding support in the stuttering community. I was extremely covert when I landed in therapy for the first time at 42. I didn’t stutter so the graduate student clinicians didn’t really know what to do with me. Everyone tried traditional fluency shaping techniques with me and it just didn’t work. I needed to stutter not master ways to just be “fluently covert!!” Yep, learning fluency targets just made me feel like I was continually using masking techniques, the very last thing I needed. Long story short, I didn’t stick around long.

      The support I found with the NSA and just truly getting comfortable with stuttering really helped me see that it was indeed ok to stutter openly and a string of “aha moments” just liberated me and I found my voice and really haven’t shut up since.

      The more I did this, the more I realized that maybe I could use the very thing I hated for so long to find purpose really and help others. Helping others has helped me!

      Pam

  10. Hi Pamela!
    I really enjoyed your video.I am a graduate speech language pathology student. After watching your video, reading some of your comments, and some of the other posts on this site I see how important the idea of normalizing stuttering so it isn’t a scary or uncomfortable discussion to have with others or even yourself. I guess my question as a soon to be new clinician would be do you have any ideas on how I can facilitate honest discussion with clients about their feelings when it comes to stuttering since it is such a unique experience for each individual?

    • Hi Ashley – great question. I think the best way to facilitate honest discussion with a client about stuttering is two-fold. First, there must be trust established, which forms the basis of therapeutic alliance. If the client believes that the client-clinician relationship is right and built on trust, then the client is much more likely to talk, share and be honest.

      I think your job is to just fully listen – be totally present when the client talks about feelings and perhaps chooses to even share their story. Being present while listening should include things like “leaning in” to show you are listening, maintaining eye contact, nodding in understanding and summarizing what you think you heard after the client finishes speaking.

      That is not the time for you as clinician to be taking notes, counting stuttered syllables or doing anything but just being present, listening and appreciating and respecting the client’s trust in you to share feelings. That is definitely the hardest thing to do as a person who stutters – share our really deepest feelings, fears and “shame moments” with someone who doesn’t stutter and with someone who is outside of everyday life and experience of stuttering.

      That’s where you can begin to build your clinician repertoire – building trust, listening and respecting the client’s reality – whether you agree or disagree – will help you build that therapeutic alliance which will help you be truly successful with people who stutter that you may work with.

      I’d also suggest that you take at least one – more if you can – counseling course. I know many SLP graduate programs don’t make this a requirement but I think it should be. 🙂 So much of what needs to be done when working with someone who stutters is simply helping them peel bak the layers of complex feelings and get to the root of why the client feels overwhelmed, stuck, scared, whatever it may be. Shame is often at the bottom of the layers. I think all that needs to be unpacked before any attempt at physical speech enhancement comes into play. That will help the client feel ready to tackle “change” perhaps and help reduce some of the burden that he or she may have by then carried around for years and years.

      So, for you as a clinician, having basic counseling skills is truly as important, if not more important, as knowing how to teach someone fluency shaping or stuttering modification techniques. Otherwise, in my humble opinion, traditional speech therapy just might not work, as was the case with me. There needs to be trust and relationship alliance in order for the client to see that change can and may help. So, if a counseling course (or two) is not required for your SLP Masters degree, consider taking as electives. That will be super important as you build your career and help you become better equipped to help someone who stutters want to, and be able to, have honest discussions about their feelings around stuttering.

      -Pam

  11. Thank you for the video, Pamela. As an SLP student clinician who doesn’t stutter, it’s interesting hear feedback about speaking your mind within the stuttering community. The perspective I’ve only thought and discussed with others is how people who stutter should speak out in the fluent world.
    I think it’s impressive you were aware of your thoughts when you encountered the man with the “worse” stutter. You may have felt shame and guilt for what your initial judgements, but many people aren’t even aware of their own thoughts. Thank you again for being vulnerable in discussing this situation as I think many of us have those same thoughts but don’t catch ourselves.

    • Hi there – yes, I have been “self-aware” about these guilty thoughts twice actually. The first time I found myself thinking and feeling relieved I didn’t stutter as “bad” as someone else was about 8 years ago. I dealt with that and processed it and assumed it would never pop up again.

      So, I was surprised when this same thought of feeling relief that my stutter wasn’t as struggled as this guy I was meeting came up again. Like I said, I immediately felt that rush of horror and guilt that I thought this about a fellow person who stutters. I guess I felt I had “transcended” feeling those feelings – I guess not. 🙂

      I think part of the reason why I may have felt this reaction and been quite self aware of it illustrates my point with my question in the video. I just don’t think we talk enough about the differences in stuttering that all people who stutter face. It’s like it’s a taboo topic in stuttering. Sure, we talk about what stuttering is, and what to do to manage it, and acceptance and many of us do a great job of educating the fluent world and raising awareness.

      But I think there is still a stigma within our very own stuttering groups. Those who stutter more significantly are often the ones we hear the least from. And that’s probably for the very obvious reason that it’s such a struggle for a “severe stutterer” to speak. But then their voices are not being heard, are they? We hear mostly from the mild to moderate PWS because it’s a little easier for us to “speak up and speak our mind.”

      Dale, a PWS and SLP, commented above that yes, that stuttering does trend more on the mild side, therefore most therapy and support is geared in that direction. So, if that’s true, what can we do to be sure those who have significant struggle with speaking are being heard and supported?

      As a future SLP, I’d be really interested in more thought on this and perhaps from your classmates too. Clinicians who don’t stutter who may feel intimidated working with stuttering period because it’s uncomfortable and not easily “fixed” might work with kids, teens and adults with significant speaking challenges. If all the therapy is geared towards “the mild end of the spectrum,” what can we do to better support everyone?

      I truly think this is a BIG topic that hopefully will get more attention as more and more people who stutter feel comfortable coming forward looking for ways to be hear, helped and more successful at school, work and the community at large.

      Pam

  12. Hi Pam! Thank you for taking the time to make this video. I think you are addressing a very important issue here. I completely understand your feelings of guilt when you thought “Thank god I don’t stutter as badly as him.” However, I think that initial reaction you had is just human nature. When you’re already different, but see someone who is even more different, it automatically makes you feel “less different” and thus feelings of guilt manifest themselves surrounding your interaction with the “more different” person.

    Your question – “do we talk about our stuttering within the stuttering community enough?” – reminds me of the ongoing debate within the Deaf community regarding cochlear implants. There is a contingent of more “old school” deaf folks who are vehemently against cochlear implants due to fear that they will eliminate Deaf culture. There are deaf people who do not feel attached to Deaf culture and simply want to experience hearing, but they are sometimes shamed or guilted because wanting to hear seemingly implies that you are ashamed of being deaf and that you haven’t accepted yourself as who you are. Open dialogue should be encouraged within these communities. To expect everyone to just accept their stuttering without any serious discussion regarding the severity of it devalues individuals’ personal experiences with their stuttering. However, I realize that many people still experience shame regarding their fluency and are not entirely comfortable discussing it.

    In your experience, how can a non-stuttering individual convey to a PWS that they truly do not judge them for their speech? Telling people to just “be themselves” and “people who judge are the issue, not you” are surely just platitudes by now.

    • Thank you so much for this insightful, thoughtful comment and raising the parallels to the deaf community.Great points that also suggest that open dialogue should always be promoted and encouraged.

      I appreciate you saying that my “guilt reaction” is just human. All emotions are just human, right? But yet we still have incredible difficulty sometimes processing any thing that seems to have emotional attachment. I think the more honest about our thoughts and feelings, the easier it is to deal with something, process and manage it and then hopefully move on, so we are not dwelling on stuff or “staying stuck.”

      There are so many people who stutter who can’t just accept their stutter – they don’t want to, they want to be more fluent, they want to be “normal” like everyone else or just “not stand out” and be different. After all, what is “normal” anyway?

      Someone else mentioned in an above comment that those of us in the “acceptance camp” maybe sometimes don’t really value the experiences enough of those who really want fluency or at least easier stuttering, and that’s exactly why I wanted to address this. We just don’t speak about this enough, and maybe really at all.

      To address your question, I think it may be hard for a fluent speaker to truly convey that they are not judging a person’s stuttering IF they show any signs at all of being uncomfortable or intimidated. So, practicing mindful, respectful, active listening skills is probably the way to go. That means “leaning in,” being present, making and maintaining appropriate eye contact. I know sometimes it’s hard to maintain eye contact when someone is having a long block – it may feel weird or awkward or swings over to feeling like you’re staring but staying in eye contact with an occasional glance away is good.

      I can always tell when someone is uncomfortable with me when I’m stuttering – either repeating sounds or blocking. They get a look of discomfort, avert their eyes or try finishing my sentences. It’s usually pretty obvious.

      And yeah, the hollow platitudes do little good. They sound fake, especially on eI hear a lot, “oh, you’re such an inspiration.”

      Better to just show that you are fully present and engaged while listening.

      Thanks again,

      -Pam

  13. Hi Pam, thanks for your thought-provoking video. You raise some interesting points. On the one hand, I think that in our community, no topic surrounding stuttering and communication should be off limits. Taboos prevent the free and open discussion of differing ideas and viewpoints that potentially can help us understand one another better, cooperate more, and solve shared problems. The pink elephants are fair game.

    On the other hand, I would urge care in the way that we approach conversations surrounding the mild-to-profound continuum. Based on what we know about stuttering, people who stutter, and conversations, it is entirely predictable that people who stutter more “mildly” may tend to speak up more often, and say more, than people who stutter more “severely.” At our local NSA chapter, we account for this by trying to make certain that everyone has plenty of opportunity to talk, if they wish. However, in our current climate of heightened sensitivities (in America), I could easily imagine “milder” stutterers being blamed for monopolizing conversations, and more “severe” stutterers being labeled as victims who get interrupted or prevented from talking. I do not think these kinds of us/them binaries, which often seem to emerge these days, are helpful. Just something to think about.

    Perhaps an even pinker elephant in the room is the idea of acceptance, which is not unrelated to the mild-to-severe continuum. I’ll give describing the acceptance continuum a go – from acceptance (full-stop); to acceptance as a means toward improvement or “recovery”; to nonacceptance. The single term “acceptance” is asked to do a lot of heavy lifting in our community. In our conversations surrounding acceptance, I think it is important to operationally define what we mean by the term, so we can all be on the same page, and avoid talking past one another. Arguments about stuttering “acceptance” often seem to be rooted in a failure to clarify which meaning of “acceptance” we are talking about.

    At our recent NSA meeting, we had a productive discussion about acceptance. As might be expected, opinions were mixed. They seemed to range from skepticism about the utility of accepting stuttering, to the simple acknowledgement that one stutters, to developing a sense of identity and pride as a person who stutters and even recognizing some of stuttering’s gifts. For me personally, “acceptance” has expanded over the years from a simple, reluctant acquiescence to the plain fact that I stutter, to becoming more tolerant, to consciously making room for stuttering to exist, right alongside my efforts to make it go away. I find that I can simultaneously “accept” stuttering while working to become a more competent communicator across many domains, including consciously speaking with greater ease. “Acceptance” can become quite nuanced for many of us. Knowing what we mean by “acceptance” can help us understand ourselves and each other better and have more productive conversations. It is a real privilege for me to hear people describe what “acceptance” has come to mean for them, personally. Always food for thought.

    I fear I might have excessively expanded the topic. At any rate, here’s to successfully navigating the minefield, one conversation at a time.

    • Hi Rob,

      Thanks for the very thoughtful reply. I agree that this is a big, complex issue and I am really hopeful that some of the conversation on here really transcends over to the therapy and support that is offered to people who stutter with more difficulty than me.

      I know it’s not a contest and that we should definitely tread carefully about conversations that suggest a “spectrum or continuum or even curve” of differences. Someone mentioned that we shouldn’t use the word “spectrum” because maybe that’s likening stuttering too much to the autism spectrum. There is no comparison there – the two “conditions” – autism and stuttering – are night and day of course.

      But for lack of a better descriptive word (in my opinion), I’ll stick with spectrum. There is a spectrum of difference in stuttering. No two people stutter in the same way, and all of our “iceberg feelings” are entirely valid irregardless of how our stuttering sounds to ourselves and to a listener.

      I’m just suggesting that we can’t ignore the fact that there are huge differences and I don’t think we quite get at them, because we simply don’t talk about it enough.

      And you’re right, “acceptance” is a big catch-all that does do a lot of the heavy lifting. Hanan above mentioned that he’s heard that some people stay away from NSA events because the events (meetings, conferences) focus too heavily on acceptance. and that’s sad if that’s really happening. I responded to him of course.

      If people who stutter more significantly stay away from NSA activities because they don’t feel welcome or that they haven’t “accepted” their stutter, I’m just wondering what can we do? What should we do? At the very least, I think we should talk about a whole lot more than we do now. 🙂

      • Pam, I agree that although we may all have equally valid “iceberg feelings,” we are not all the same. There are significant differences among people who stutter, and we should not ignore them, particularly if people feel excluded from our community because of the particular ways in which they stutter. In the world I want to live in, NSA and our other stuttering support communities would be the most open, inviting, and welcoming groups for all people who stutter that anybody could imagine. Despite our differences, we are all in this together.
        Rob

  14. Hi Pamela, I really enjoyed your presentation as it opened my eyes to some things that I have not thought about before!
    I am a second year speech pathology graduate student and had a question for you about what you spoke about in the presentation! I know that speaking about feelings and attitudes regarding stuttering can be a difficulty endeavor sometimes, as different people will react to this discussion differently. I was wondering what experiences you have had facilitating this discussion of stuttering severity and the impact on quality of life? What have you found to be most helpful to furthering this conversation in a respectful and understanding way, especially as a future speech pathologist that has not had a personal stuttering experience?
    I definitely agree with the fact that things should be talked about and people should speak their mind in this community. I wondered if you had any ideas about how to speak your mind and bring this discussion to the forefront of the stuttering community? Thank you so much for answering my questions!

    • Hi,

      Good questions and I think I’ve tried to address them in a couple of responses above. I have not personally attempted to foster deeper conversation with people who stutter more significantly than I do, beyond my role as a host for an online support group called Stutter Social. There, up to 10 people come in to a virtual video chat for 90 minutes and we chat about any and all things stuttering. When it’s my turn to host, I am very cognizant and try very hard to ensure that everyone who WANTS to speak, gets a chance to speak. That’s the key – not everyone WANTS to speak. Then you may ask, why are they there?

      If someone hasn’t spoken voluntarily, I might specifically call on them and ask of they have something to add or share. Some come in and just want to listen, which is fine. Some come in and have a hard time initiating a response because their struggle is more intense than mine, so I try to notice that and ensure the person gets time to speak.

      But as noted above in a thread with Ian, many who stutter with more physical severity than me or others who are mild to moderate, they stay away or if they come in, they stay silent. Sometimes it’s hard to speak up in a group setting with a mix of stutterers present, because either by accident or design, those who stutter easier tend to talk more and sometimes take up more time, so as Ian pointed out, those individuals may just not feel welcome or just don’t know how to interject or join in, or just may not be comfortable doing so.

      And those who stutter more mildly sometimes don’t even realize they may be “monopolizing” the conversation. So it’s then my job to interject and say stuff like,” lets hear from someone else who hasn’t spoken yet” or specifically call on someone. It’s hard to find the balance. But it’s impossible when these individuals don’t even come to the table.

      So I guess my whole point in inviting this dialogue here and asking my question, is what can we do?
      How does the therapy and support communities make it OK and welcome to have these deeper conversations? How do we invite and get people to stay in groups – both physical and virtual – to even hope to talk about this?

      I think SLPs are in a really good position to tackle this, because you will see these individuals, in one on one therapy and many group sessions. I really think this needs to be talked about so much more than it is. What ideas do you or your classmates have? Especially those of you that don’t stutter?
      It’s a slippery slope isn’t it? You, we, are in a position to help but only if those that need the help the most perhaps actually show up somewhere.

      Thanks again for posing such good thoughts. Hope you see this and respond back. -Pam

  15. Hi Pamela, thank you for sharing your thoughts.

    Is there anything you would have liked to have known as a child, that you feel would be beneficial to tell children who stutter? And perhaps any advice that you can give to parents who have a child who stutters?

  16. Hi Pam, thank you for sharing your thoughts on this topic.
    I am a speech-language pathology graduate student, and in our fluency disorders class, we do speak a lot on the topics of acceptance and honesty. My question to you is that, as adults, the majority of the time we can communicate how we’re feeling or how something is affecting us more easily than a child may. How might we “entice” the child who stutters to be open and honest with their daily struggles with stuttering and how it makes them feel?
    Also, within the pediatric stuttering community, do you think it would be more beneficial for a child to see and express their honest opinions to an adult person who stutters(showing that stuttering is completely okay even into adulthood), or would it be more beneficial to have them interact and be honest with a child around their own age who also stutters (showing them that they’re not alone)? Would their comfort level be increased more with one option over the other?

    Thank you!

  17. Hi Pamela,

    Thank you so much for your insight. Something that truly resonated with me was your comment about your childhood and how you were older until you met someone else who stuttered. Do you feel that your childhood would have been better/easier to navigate if you were friends with someone who also stuttered? I am currently a second-year Speech-Language Pathology graduate student with very limited exposure to working with children and adults who stutter. Thank you for your time! -Elizabeth

  18. Pamela,

    Thanks for doing this video paper. And, for encouraging me to watch it and read the discussion. I responded under your post on “Talk to a professional” at a bit greater length, but wanted to be sure you know that I read your comment there. Great posts here!

    Regards,

    Lynne

  19. Oh my goodness, Pam!!! What a profound video!!! And you’re absolutely right, we don’t talk about it enough and we should! When it comes to my son, he would say it’s easy for me to say and as empathetic as I try to be, he’s right that I’ve no idea what it’s like to be a PWS, but my biggest goal is for him to accept his stutter. I believe with every fiber of my being that acceptance is key in him being able to live his best life. I believe that acceptance begins with talking about it and that’s the road we are on with our son. Thank you! I greatly admire you! Hugs!!

  20. Hello, Pamela! Thank you for sharing your thought on this topic.
    As an SLP graduate student, I really appreciate the example you gave because it showed that this kind of situation happens. Even though we expect PWS to be more understanding of people who share the same experience, that may or may not be the case. However, you as an individual showed that you recognized that thought and wanted to kill that negativity. People do compare themselves to others all the time, but I think the important thing to take away is we must own it by having self-awareness and empathy and speak our minds, so the issues get recognized.
    Again, thank you!

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