An open letter – How I want to be treated as a Person Who Stutters (PWS) – Bruce Imhoff

About the Author: Bruce Imhoff is a PWS from Australia and has been involved with organisations for PWS since about 2006, both locally, nationally and internationally.  Bruce is currently serving as Vice Chair of the International Stuttering Association. Bruce also works with the International Stuttering Awareness Day Online Conference team, delivering the conference since 2013.  He works in the local health department managing a software application used in public health.

WARNING – ADULT LANGUAGE

I’m getting a little sick and tired of people assuming and telling me what I should do, no, WHAT I MUST DO, AS A PWS.

People think they know what’s best for me because I sometimes (inexplicably) cannot express myself clearly. They think they know better.

Did you forget your name?

*giggle*

Do you want the sandwich, the sausage, the spaghetti, the SHIRAZ, THE F’ING SAUCE???

Then the professionals tell me what I need to do. Breathe like this, talk really slowly, soft onsets, no hard contacts, continuous airflow, wear this belt around your chest. Some of it, helpful, sure, but are you going to talk like that in public? No. AND YOU EXPECT ME TO?

Clinical evidence of successful treatment doesn’t always translate to practical methods in the real world. Not to say I don’t trust clinicians, I have a strong belief in evidence-based treatment, but-tal-king-like-this-in-pub-lic-sounds-like-you’re-a-lit-tle-slow.

Then friends, even friends who stutter, ALWAYS with the helpful advice.

  • Slow down
  • Don’t let them talk for you
  • Take as much time as you need, but don’t let them guess what you’re trying to say
  • Try this drug, this hypnotherapy, this thing you stick in your ear that repeats your speech back at you

Nobody has given me the cure for stuttering, but neither has anyone listened to what I want.

What. I. Need.  

WHAT WORKS FOR ME.

What I NEED to do to get THROUGH LIFE and SURVIVE EVERY DAY OF THIS EXISTENCE, knowing that if I have a MAJOR BLOCK then I totally SHUT DOWN…

Do you need a glass of water?

Are you ok?

Did you fall asleep?

Can I pray for your stutter?

Here, let me rub you on the back, maybe that will help, oh you poor dear.

WTF? Get away from me!

Everyone thinks they are just trying to be helpful, that they think they know what’s best, except for those who have a nervous inappropriate reaction, or the very few who are just scumbags whose only response to disability is ridicule.

What, did I miss the cure? AGAIN?!

Did you suddenly become imbued with the knowledge that has eluded the speech and language pathology profession SINCE ITS INCEPTION?

All people are different. That also applies to people who stutter. It’s impossible to presume that one thing that works for one person who stutters will work for all other people who stutter.

What do I want?

I just want what works for me, not some helpful words, thoughts or ‘what’s worked for this other guy’ or ‘what worked for me’ or ‘I know this guy who stutters and he always gets over it by sucking on a lemon’.

No, I don’t want your ‘helpful advice’, but I do want your understanding that I’m different to everyone else and that stuff that works for that other guy doesn’t necessarily work for me.

How about you ask me what works for me for a change, and stop telling me what worked for you or those other people (or you really don’t know and you’re just making shit up, in which case, just STFU).

Sincerely,

A PWS. Speaking my mind.


 

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Comments

An open letter – How I want to be treated as a Person Who Stutters (PWS) – Bruce Imhoff — 41 Comments

  1. This. I love this.

    Bruce, this is absolutely wonderful. It’s bold, honest and direct and probably what’s been on tons of people’s minds. And you had the courage to put it out there. Not everyone will like this and I suspect that some SLPs might even be slightly offended.

    You’ve spoke your mind. I think people have genuinely forgotten the importance of just simply asking what do you need or want. That’s why speech therapy didn’t work well for me. There was always the implied assumption that the therapist knew better than me what was in my best interest.
    When I finally realized that wasn’t working and they didn’t want to change, I did. I left and fast.
    I’ve been much better about speaking up since then and that in itself has been therapeutic for me.

    This was really great. I’m so glad you spoke your mind.

    • Thanks Pam! I should have also provided some additional context for readers, which I will do here. My treatment, a prolonged speech technique, was based on two rounds of week-long sessions, one as a teenager in the early 80s, the other in the early 90s early in my career, so treatment at the time was fairly limited and from what I’ve read, has progressed somewhat from those early days. The treatment itself helped to give me fairly good fluency for about 12 months but then I relapsed.

      I haven’t subsequently sought treatment because a) the treatment programs funded by the government no longer exist (I guess they didn’t see stuttering as a serious affliction, go figure) and b) because I felt I had moved to a point where I wouldn’t necessarily benefit from further treatment in a clinical setting.

      Personally, I’ve found confidence building and personally challenging speaking tasks have really helped with my fluency. Nobody told me how to do that, but that’s *what works for me*. It may not work for others, and that’s because we’re individuals…different things work for different people.

      So many people in the online conference have personal stories of *what worked for them*. It’s great to read that. It’s great for people to have the opportunity to try those techniques to either find their fluency or the acceptance of stuttering that they’re looking for. For me, I want to find a mix of fluency and acceptance that I’m comfortable with. No clinician will be able to tell me what that is, it’s something I need to discover for myself.

      The clinicians have a lot to add in the evolution of treatment for stuttering, and I thank them all for their hard work and the effort many of them put in, often in their own unpaid time, to help people who stutter. They are a special group of people.

      Yes, I expect some people will be offended by my contribution and I understand that there’s a lot to be achieved by working together, both with clinicians and others. But I also know that I don’t particularly have warm cuddly feelings towards other people who misunderstand me or intentionally mock me. I also don’t expect the world to suddenly understand yet another thing overnight, but it does need to happen.

      But there’s a limit, when we snap, say “enough!” and give others a reality check. I’m angry and I’m sure others are angry too about how we have been treated. I am a person first, not a stutterer, I deserve the same respect as others. But I still often internalise my absolute indignation about how I’ve been treated because of my stutter.

      Speaking my mind keeps me sane and it can be helpful to occasionally vent (in an appropriate way and in an appropriate forum) to help achieve that objective.

      • Hi Bruce-
        Thanks so much for sharing your thoughts! As a clinician who works with people who stutter – I think your piece speaks volumes regarding the importance of getting to know a person and his/her values – what really, really matters to them! I can say, first and foremost, that I was not offended in the least bit (as a clinician). While clinicians can bring a lot to the table – I really view our role as being guides to those who we have the privilege of working with. And learning, exploring, and working together to become stronger communicators and the best version of ourselves.
        Thanks!
        ~Jaime

        • Hi Bruce (and Jaime),

          I echo all of the words that Jaime has mentioned in her post to you. I appreciate your honest open letter and I very much look forward to sharing this open letter with one of my adult clients. As a clinician who has a special interest in working together with those who stutter, I feel it is important to let all of my clients know that our therapy room is truly a safe space where we all can feel comfortable enough to be honest. Through honest conversations, very real gains can be made. Thank you, in advance, for being a part of some of the gains I know my client will have. All the best!

          -Erik Raj, NJ (USA)

  2. Humorous and serious at the same time, great work Bruce!

    “It’s impossible to presume that one thing that works for one person who stutters will work for all other people who stutter.”

    This is the one line I firmly believe in. Stuttering is as unique as our DNA and there will never be a “one size fits all” approach for therapy. As you’ve clearly articulated, find what works for you and get on with life. Stuttering doesn’t have to define us, it’s just a characteristic like all of our other traits.

  3. Thank you, Bruce, for speaking your mind so eloquently.

    You write that what works for you is “something I need to discover for myself.” I feel that this is a very important point. Van Riper is quoted as saying “The stutterer must conquer his own problems. No one else can do it for him.”. So while we cringe at the term “stutterer”, the message seems to be correct still today: it’s up to each of us to study, listen, learn, and decide on what’s right for us. In terms of supporting others, Emphathy is key, not sympathy and giving advice. Do you agree with this?

    Thank you very much for writing your paper.

    • Thanks Hanan, my friend. I certainly agree that we need to help ourselves in order to progress. It took me some time to reach that conclusion and get to where I find myself now, not because of advice.

      Yes, genuine empathy is definitely the way to truly help and support a person who stutters on their journey. There’s also a place for clinical treatment and other therapies that have evidence and support, but they are part of the journey, not a solution in their own right.

      Thank you so much for reading my paper!

  4. Hi Bruce!
    Great post. I’m not a PWS, but I’m a graduate student studying speech pathology and we’re discussing this very issue right now in class- that there isn’t a cure all or a one size fits all “cure” for stuttering. Individuals do actually stutter differently, like you mentioned. This is something I’d want to emphasize as a clinician if I were to do more with fluency in the future. I was interested to hear about what you have found effective. Could you talk a little bit more about confidence building and personally challenging speaking tasks?

    Thank you!
    Tricia

    • Thanks Tricia. As I’ve said I’m a fan of treatment and one treatment certainly doesn’t fit everyone, but I do believe treatment does provide the tools and methods for people who stutter to fall back on, if they’re able to find improved fluency but are having a particularly challenging moment. I read about people saying ‘we shouldn’t be aiming for fluency and accept our stutter’. That might be true for some, but it’s not true for me and I want something different.

      To your question, I try to build confidence by just facing a task and doing it and pushing boundaries. I’m not always perfectly fluent and that’s ok.

      At the 2016 Atlanta World Congress for People Who Stutter (also NSA conference) I got up in front of roughly 800 people to introduce the participating countries. I’ve given presentations in front of audiences of roughly 100 people for my job. I’m making and receiving calls as part of my job and I don’t hesitate, I must do it to do my job effectively. I’m often involved in meetings with stakeholders where it’s up to me to provide a lot of input and advice. I wouldn’t be successful in my job if I constantly avoided speaking situations, and if I’m asked to give a presentation to colleagues I don’t hesitate to say yes.

  5. I love how you described your emotions so vividly and clearly in your post! I could so clearly sense the frustration and exasperation behind your words. Did you find that working with various therapists and trying different treatments had a positive effect on the way you viewed your stutter? Did anyone try counseling you, or was it mostly focused on techniques to reduce your stuttering?

    • Hi Bethany! As I noted in an earlier response, I’ve only had two intensive treatment sessions, but I did also have some one-on-one therapy sessions with a therapist. As I said, it was the early 80s/90s, but it was interesting at the time to note that the resources certainly all seemed to be aimed at children.

      I haven’t had therapy, either one-on-one or group, since that time, but the methods and techniques I learnt back then are still in my mind today. If I’m having a tough time I will try to employ those techniques, not always successfully, but still, it’s better than not having any such skills to fall back on.

      Counselling? I don’t recall any specific counselling related to stuttering treatment at the time, I just recall the techniques that were taught.

  6. Dear Bruce,
    I have to admit that as an SLP and lecturer, I love your letter. I truly appreciate your perspective. I will recommend reading it to all my students. It could be used as a reminder of how important it is to listen carefully to our clients. We should follow their values, needs, beliefs, and perspectives. It is so hard as SLP’s not to impose our will on our clients. Sometimes we forget that our clients are the real experts in their stuttering. We should be ready to learn from them and with them. Thank you for sharing your point of view. Familiarizing myself with this text has been a priceless experience for me. More power to you!

    • Thanks Katarzyna! Every person who stutters is at a different stage in their journey, but I clearly recall, going to treatment for the first time (and second time) that I was fairly desperate by that time, wanted anything that worked and would quickly accept any method or technique that might help. Reflecting back on that time now, I have a different perspective and think the approach could be more nuanced, but you don’t know what you don’t know at the start of the journey, and things have certainly changed since my initial treatment. Many thanks for reading my post!

  7. Bruce,

    Introduction

    This was in no way meant to persuade you to change your mind, to have you see the “wisdom of my way”. I have the highest regard for you as a person who has and is trying (just like me) to help Persons Who Stutter (PWS) to have rich, full, and enjoyable lives. Nor did I have a goal of refuting anything you have said.

    The metaphor of Therapist/Coach in a Discipline as Pole Vaulting/Recovery from Stuttering

    When a client comes to me to get help with his/her stuttering I clearly state that all recovery from stuttering is self-therapy. I, as a coach, know what has worked for me and my clients-I know what exercises have helped other people. You, the PWS, are the expert of you. Especially what has not worked for you.
    To communicate, we agree on some metaphors. Sheehan’s iceberg is one of them. Where the visible part of stuttering is only 8.3%! Fully 91.7% of stuttering: the anxiety, shame, guilt, self-downing, obsession, according to this model, is below the surface. Why not work on the part of stuttering that contributes the most to the syndrome?

    When you come to me wanting to learn pole vaulting, you have some inborn talents to help you do so, such as upper body development, speed in running, willingness to work on the fear of heights, etc. And above all, there has to be the motivation and available time to work on the skills.

    The role semantics plays in behavioral health recovery

    Our behaviors, beginning from emotions associated with stuttering to stuttering itself are based on our beliefs and attitudes. These, in turn, are generated by the self-talk. I totally agree with you about the counterproductive use of should and must. As Karen Horney stated, “most people live under the tyranny of shoulds and musts.” So, the first step is to work through the demands. Stop using words like should, must, and have to. Fortunately, Rational Emotive Behavior Therapy has provided us with a set of tools, that in turn let us live full, enjoyable lives whether we stutter or not.

    So, what do I do in therapy?

    First, we, the PWS and I, assess what has and what has not worked in making the PWS’s life more enjoyable, the communication easier. Using the scientific method based on three questions- 1) where is the evidence? 2) is it logical? and 3) does it work for the given PWS?-we experiment with toughening the PWS reaction to what he or she imagines is the judgment or acceptance of others.

    I try to convince the PWS that he or she can manage their emotions at least to some extent. Once these emotions are tamed then we can experiment with various speech techniques. My current favorite is the easy Iowa bounce. This is how we talked when we started to learn to talk “ma-ma”, “da-da”, etc.

    So, Bruce, what works for you? What are you still willing to experiment with?

    I am a realist. Universe has both good things and bad things in it. Some actions make living with and without stuttering easier. Some actions make living with and without stuttering harder. I am willing to try to work to make PWSs lives more fulfilling and enjoyable. I am willing to work with PWSs to help them communicate better. But above all, I am dedicated to making the PWSs accept themselves unconditionally whether they recover from stuttering or not.

    The questions I did not, nay could not answer: What works for you?

    After 17 therapies, I found an answer for myself. I consider myself recovered from stuttering. (google “Neiders YouTube”). I have helped a great number of PWS over the internet. Many people have emailed me that they have read my book and it has helped them recover, at least partially, from their stuttering. Thomas A. Edison said after one of his experiments with finding the right light bulb filament failed. “I have not failed. I’ve just found 10,000 ways that won’t work.” “Many of life’s failures are people who did not realize how close they were to success when they gave up.”

    Bruce, please do not misunderstand me. In no way am I requiring that you should try REBTS or contact me to discuss what might work for you. I would be delighted, though, if you could tell me if you had tried any of the techniques that come under the heading of Cognitive Behavior Therapies. And of course, I would like to know what works for you.

    • Hi Gunars. Wow, thanks for your response!

      I understand what you’re saying. While it’s great you have found a solution yourself (I feel I am still somewhat searching), I simply don’t have the patience, or interest, to try 17 different therapies…not to mention the financial resources to fund such a journey…nor, will I add, that I feel the need to. I’m at a stage where I’m comfortable. Not to mean I’ve given up, or I don’t think I can do any better, but I just don’t feel a need to progress further right now.

      People with other disabilities use use different techniques/technologies/assistive devices to manage, but similarly they reach a point where they are comfortable. Ideal? Depends on the person and their perspective.

      So thank you, I do appreciate the advice, but right now, I’m OK. I don’t feel I need to do any more work right now, but many others will appreciate your help.

      It’s truly great, and inspiring, to read about the work you are doing and the progress that’s being made. Thank you so much for your comment and keep up the great work helping people who stutter!

      • Dear Bruce,
        I agree with you that one does not have to recover from stuttering to live and enjoy life fully. It appears that you have learned the basic principle on which the above is based, “A PWS can *accept and like* oneself unconditionally whether he/she stutters or not.”
        Effective self-therapy consists of further minimizing the unhealthy negative feelings of speech anxiety, shame, guilt etc. and replacing long, struggling, forced stutters with easy repetitions.
        If you (or anyone else) ever want to know details how to do the above, please contact me. (No need for anyone else to distill the teachings of the 17 therapies that I underwent 😊)

  8. Hi Bruce!

    I loved your honesty and ability to make me laugh while strongly making your point! I am not a person who stutters, but a newly graduated SLP in my clinical fellowship- so I appreciate your perspective. You make some really great points. Isn’t that just the most frustrating thing when people have super simple resolutions for problems they haven’t experienced? I love that you acknowledge that people are often just trying to help– yet it doesn’t make it any less frustrating! You also bring up a great point about different people in your life (or the life of someone who stutters) often offering advice on how to deal with stuttering. Do you think that says a lot about what people really understand about stuttering? It makes me wonder what makes people so ready to give advice, but not have a real discussion about that thing they give advice on. Like you mentioned, someone asking YOU what works for you.

    • Hi Alison, thanks! Yes, people often have good intentions but lack the insight to understand the impact of their suggestions. A part of the reason for writing my article was to acknowledge my own experience and that the experience of each PWS is different. Over the years we’ve all been told different things, learned different things and maybe even applied a slightly different interpretation to similar things, so when other PWS have advice to offer, it’s from their own perspective and beliefs. ‘Oh, that X technique doesn’t work, it’s a bunch of rubbish, you should try this Y technique’ and so on.

      To be honest, right now if I was asked by a PWS what to do for treatment, my advice would be to start with a professional in stuttering treatment that also manages the aspects of the emotional and (potential) social anxiety aspects of the condition, while also ensuring the PWS understands that a solution is only possible with their own engagement, investment and actively working with the clinician to identify what does and does not work for them, because stuttering isn’t just about the physical action of stuttering, it’s about so much more.

      Having said that, accessibility to treatment is often constrained by physical location, unless the provider is internet or telehealth based, so finding a clinician with the right mix of skills can be challenging.

  9. Bruce,

    This was a great piece! I began by expecting to read a paper and instead found that I was reading a piece of art. Your emotions really showed through throughout. As a future speech and language pathologist, I found this very insightful. I know that I experience the same frustrations when others try to help TOO much. I experienced this just tonight when I had four people in my car tonight trying to give me different advice on the best route to take. This was an overwhelming and annoying experience. I can see where your frustration would come from, being constantly faced with others thinking that they know what is “best” for you. Thank you for sharing!

    • Thanks Lexi, always happy to read feedback and comments from people having all kinds of different perspectives! I think ‘perspective’ really describes where I am right now…having seen where I’ve been and where I am now gives me a little insight to reflect on my experience, hoping that others can acknowledge and reflect on their own experience and hopefully avoid some of the same pitfalls along the way. But everyone’s journey is their own, and those learning experiences do need to happen in order to grow as a person.

  10. As a future speech-language pathologist, what is some advice you can give about when instructing our clients who stutter? I want my clients to be functional communicators and feel comfortable speaking in public.

    • Dear Bruce,

      I really appreciate your letter. I think anyone entering this field needs to read this. What was really meaningful to read was when you said, “no one has ever asked me what I want.” I agree that there is not a one size fits all approach and everyone is different. If no one is asking you what you want, then why do they think they can tell you what to do?! In our fluency disorders course, we focus a lot on what true “successful” stuttering therapy is. I believe that all depends on the person, and if no one asks you, then therapy will be pointless. I think your letter brings up the most important point of truly getting to know someone before you just try to “cure” them.

      • Thanks! I think that there’s still a lot misunderstood about stuttering but I can see improvements happening. Now it’s not just about getting PWS to speak differently, there are other factors considered, eg. the mental aspect, social anxiety, etc. When I was taught the technique I got the most out of the exercises, speaking with real people, speaking in front of a group. Those activities built my confidence more, but as I noted above, that doesn’t work for everyone who stutters. It’s great to read about the focus on “successful” stuttering therapy. However I think the key to that is beyond the scope and control of the SLP. Let me explain. In my experience, the PWS must truly accept that it’s their responsibility to ‘fix’ the problem, if they 1) perceive stuttering as a problem, 2) if they are seeking fluency and 3) they would benefit from such an approach (I don’t believe every PWS would benefit from such an approach).

        I hope my letter does make people generally think more about the problem.

    • As a PWS I wouldn’t presume to tell you how to instruct other PWS. That’s my point, everyone is different. Work with them to find out what works for them. They might need some help in the form of a range of tools and methods that they can use as needed, but there’s no single thing that is going to be a solution for others.

      I was taught a prolonged speech technique, but it wasn’t until my personal circumstances forced me into a role where I had to answer the phone all day every day that I started to see change, and so I continued to put myself in difficult situations. My fluency improved, but that doesn’t work for everyone. The prolonged speech technique only formed a backup, but I never intentionally used it because it didn’t sound natural.

  11. Hi Bruce!
    I want to start by saying thank you for being so transparent in your letter. I appreciate your willingness to share. I am a second-year graduate student at the University of Minnesota Duluth and I am currently taking an advanced fluency course. We had a panel come in during one of our class periods. During this panel, I finally met a person who was so affected by her stutter. She explained about all the tasks that her stutter was disrupting and at any moment in time she would press a button to have her stutter go away. She explained the difference between accepting her stutter and being at peace with her stutter. She said she accepted it but was not at peace. What is your take on this? Have you accepted your stutter? Are you at peace that you are a person who stutters? Since I am a student aspiring to be a speech language pathologist, I also wanted to ask how you have advocated for yourself and what advice do you have for me to help my future clients advocate for themselves. How do you tell people what works for you and what you need? Again, thank you for sharing!

    • Hi Kenzie!

      I would agree that I accept I stutter but I’m not a peace with my stutter.

      I remember living in fear of the dreaded classroom speech, or ever being asked a question in class. I failed high school English because I wouldn’t give a speech in front of class.

      I would also classify my type of stutter as a significant block, like it’s a brick wall and nothing is getting through. So for me, if I’m having a bad speech day I would never describe myself as being a peace with my stutter.

      Having said that, would I ‘press a button to make my stutter go away’? Then, maybe, now, certainly not. Stuttering doesn’t define me, but it is part of me and has helped me to become the person I am. If I was any old fluent person I certainly wouldn’t be working where I am, with who I am with, or living where I am living, and I am happy with where I find myself now.

      I accept that I stutter, but I’ve also somewhat taken responsibility for my life and I’m just getting on with it.

      How do I advocate for myself? Well, let’s first assume it’s a controlled environment and there is time to plan. I’ll come back to this point, because the other situation, a high stress environment where you’re ordering food or something like that, there is no time, people often aren’t interested and may be more abrupt that in other situations, but in those high stress environments I would be happy to advocate for myself or others if it was clear I was being treated unfairly. In such situations it would be helpful for the person affected to debrief and discuss after the fact, to understand what happened and decide what future action to take.

      But, back to the controlled environment, if you can choose the ideal time with the ideal audience they you can brief the person (eg. chairperson) or participants informally, let them know your needs, if you need help or more time, ways that you can participate and what would generally be helpful to you to be involved in the planned activity.

      Just having the stress of disclosure removed at the outset can be such a big relief, it lets you focus on the activities, rather than beating yourself up for how you did or might speak.

  12. Bruce,
    This is an amazing post that gives great insight into your true feelings. And that is what we need. People need to know the truth about how diminishing it can be when they try to ‘help’ a PWS. I think it was really good for me to read as a graduate student in a speech-language pathology program because we always want the client to succeed. But what you have pointed out is that the client may have different goals from what the clinician thinks is best. One of the things we have been learning about recently is to make sure we understand the expectations of the client and to ask what their goals are. This is such a great representation of that and I think it is going to be inspiring to all those who read it. Thank you for sharing your story with us.

    • Hi Rebecca. Thanks for your thoughts. I think this is really the first time I sat down and just wrote about those things that really just bug the hell out of me. People are trying to help. Great. But help needs to be carefully considered. Well intentioned help is nice, but with no real grasp of the situation it can fall flat

      I appreciate the difficulty of the clinician, because I would have said back then, ‘Fix me. I don’t care how, just fix me’.

      How you actually elicit what a person wants, when they’re at the start of their journey, can be difficult, but for me (and this is what worked for me, at the time), it was;

      – I wanted fluency
      – I wanted coping techniques, so that if I hit a problem, I could recover
      – I wanted natural sounding speech
      – I didn’t know I needed (or should ask for) treatment for the emotional side
      – I didn’t know I needed ongoing support (nor did I accept it at the time, only to relapse)

      There’s probably a bunch of other things, but trying to get what the person wants when they don’t know it themselves is really hard!

  13. Bruce,

    Thank you for sharing your honest opinion and thoughts about your experience with therapy. It was so insightful to read about what hasn’t been effective for you and what you would have preferred in therapy. As a graduate speech-language pathology student currently learning about fluency and the many techniques that can be used in therapy, it is good to get a reminder that taking a step back and asking the person what is most important to them is key to effective therapy. As a clinician, it is our job to help so we may be quick to suggest new techniques that may have worked for someone else in the past or that we just read about that is showing significant improvements for people. Reading this shifts that perspective for me and I will now be thinking about “what does my client need/want?” and make sure they are an active part of setting THEIR goals. Thanks again for sharing your experience and perspective!

    • Hi Katy. A person doesn’t know what they want until they understand what options are available. When I had my treatment I don’t think there were ‘options’, but I understand there are certainly a range of things available now to help people who stutter. Those things may depend on the treating clinician, but I would have been very happy to understand what range of options were available to me and what clinical advice might lend weight to a particular approach.

  14. Bruce,
    I truly enjoyed reading this – and it resonated with me. I am not a PWS, but I too, dislike people telling me what is best me. I, like several other posters, am a graduate student of speech-language pathology. It’s a great reminder to treat others as a person first, and not as a stutterer first. I hope that I will be able to (and remember to) incorporate this important skill into my future practice with all clients.

  15. Bruce,

    It is so unfortunate that the professionals you have worked with aren’t focusing on what works for you and what you want. I am currently in a Master’s program and our professor emphasizes that what we do in therapy with a PWS needs to functional for that specific person. If the person we are working with is uncomfortable to use a certain technique in therapy they most likely will not use it outside of therapy. I am also saddened to hear that people aren’t understanding of the fact that one technique doesn’t work for everyone. Growing up I had a friend who acquired a mild stutter but it didn’t appear to bother him and I never saw negative reactions from people in public when he would stutter. Now that I am in grad school we have learned a lot about negative experiences that our professor has heard about as an SLP and a PWS.

    • Thanks Madison. For me, the technique I was taught was far from natural sounding. While I was able to gain some fluency in the short term, it just didn’t last, but I also didn’t understand the ongoing need for maintenance sessions.

      However, I do agree that I think people who stutter are often their own worst critics, and that they perceive (project?) the views of others to a degree that is just not true or event realistic. Not to say seriously negative events don’t occur, they certainly do, but I would say the PWS criticizes themselves far more than others who are interacting with a PWS.

  16. Bruce,

    What a great letter! I am not a PWS and I always appreciate learning more about the experiences of PWS. I find it so interesting that in a world and culture that is so independent, people have no problem saying the things they say to you! I see that you’re from Australia and so maybe it is a little different there, but in the US, you mind your own business, people often don’t smile or say “Hi” to others on the street, everything is very personal, independent, and closed off. So, it is odd to me that with this type of culture, people have no problem asking to pray for your stutter or to rub your back or even comment on your stutter at all! How bizarre! Again, I enjoyed reading your letter and appreciate your openness!

    • Thanks for your feedback. Yes, Australia may be a little different, but I’m surprised to read your description of the US. It’s kind of the same here, but it varies between urban and rural areas (where people are much more friendly to each other!). The situations I spoke of were not all personal experience, but I was trying to write dramatically, however from my readings these did all appear to be genuine advice they have received when stuttering. I think it’s also about the environment you’re in (eg. workplace or community environment, eg. church).

  17. Hi Bruce,

    My name is Caitlin, I am a speech language pathology graduate student who is taking a fluency class. We have been talking about how stuttering therapy does not always work and it is extremely important to take into consideration our clients’ needs and wants from us as the SLPs. I really appreciate your honest input for what you want from us as clinicians. My question is “What advice do you have for new clinicians on personalizing therapy for clients who stutter for how we can provide better therapy or support to our clients who stutter?”

  18. Hi Bruce,

    Thank you for your honesty. Strategies are meant to facilitate effective and efficient communiation that the speaker is comfortable with. If you’re comfortable with your communication and where you’re at right now, then of course stop or take a break from therapy. You’re an adult and can choose to use strategies or none at all. What’s important is that you are saying what you want to say with confidence. It’s unfortunate that clinicians don’t consider the person but only the stutter. I hope more clinicians will take a perspective that will cater more with how clients feel and their goals.

  19. Bruce,

    I loved your honesty! I am a graduate student studying SLP. As I learn about various disorders it has been very easy to think of people as fitting in a tidy little box. Such as, this client will behave in this manner because he experienced a stroke in his left temporal lobe. It is easy to see the disorder, not the person. You have clearly shown us the person, not the disorder. I also appreciate the use of “PWS”. It is a positive step towards remembering there is a person, along with the stutter and that person is so much more. I wish you the best in dissuading the “well-wishers”, those who pity, and of course, the scum bags. Thank you for sharing your story with me and improving my education.

  20. Bruce,
    I commend you for your courage. Thank you for sharing your experience with us all. As a student of SLP I greatly appreciated learning about your perspective. It is through sharing these experiences that the field progresses and clinicians learn how to better serve the needs of their clients. What a good reminder to stay focused on the needs of the person and not focus completely on their stutter! I plan to utilize this knowledge as I move forward in my schooling and as a clinician.
    Thanks! Anna Park (CA, USA)

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