Dysfluent

A personal perspective on stuttering by Sarah Horton, speech pathologist, PhD student and person who stutters.

Created by Uwe Kils (iceberg) and User:Wiska Bodo (sky)., CC BY-SA 3.0 <http://creativecommons.org/licenses/by-sa/3.0/>, via Wikimedia Commons

We often use the iceberg analogy to describe stuttering. Above the surface are the parts of stuttering that are observable to those around us: sound and word repetitions, prolongations, blocks, and those tic-like movements of our bodies that can accompany them. But underneath the water is the internal experience of stuttering. This is where fear lives, and shame, anxiety, and avoidance behaviours. And the great mental energy it takes to implement techniques that make us appear fluent on the surface, that shave down the visible bulk of the iceberg.

My fear of writing personally about my own stuttering comes from the gargantuan impact it has had on my life internally, but the negligible impact externally.

Growing up, my approach was to make myself invisible so as not to draw attention. Imagine that iceberg floating by, barely breaking the surface of the water. If you looked hard enough, you might have just caught the sparkle of a stuttering behaviour. But, underneath, the unwieldy, dark mass went unnoticed.

Now, when I tell people I stutter, they see me as "recovered" and a "success story" because I appear so fluent. Which is a shame. That's not where my value lies.

I'm hesitant to write about my experiences because there's always somebody out there who has it worse. But I am learning that every voice is valid, and everybody deserves to be heard. Including me.

I didn't even really know I stuttered until I was an adult. Before that, I just knew I wasn't good at talking. Just like sport, I thought. Some people are good at certain things, and some people aren't. That's just how it is.

I wasn't good at talking, and I avoided it at all costs. Maybe it's the perfectionist in me, the part that recoils at even the slightest criticism. It would have taken just a single negative comment, a single imperfect reaction, for me to stop trying.

I spent countless hours in school classrooms, afraid of being called on to answer a question. When the time came, I found myself flushing beetroot-red instantly. Eyes down, I would automatically shrug and say, "I don't know." Painful seconds passed while I waited for my teachers to accept this. I always said I didn't know. But, often, I did know – and my teachers knew I did.

When reading aloud, I would count down the students and the paragraphs until it was my turn. I knew to avoid certain sounds and words; I could skip over them quickly without drawing too much attention. Or I could take a perfectly-timed bathroom break and miss my turn entirely.

In early high school, I remember my mother saying to me, “I wish they didn’t place so much value on oral presentations in school these days – when I was your age, girls were encouraged to stay quiet.” She spoke to my teachers and tried to help me avoid these presentations. I didn’t know how to explain to her that, actually, I liked speaking in front of the class, where everything was pre-prepared and I knew I would be fluent. I wanted to put my hand up and take part in discussions. But there was always the chance that I would try to speak, and the words wouldn’t be there.

A perfectionist doesn't know how to do something just for the sake of enjoying it. A perfectionist does something to be the best at it. Talking, for me, was a thing that my brother did, my peers did. But not me.

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One of my majors in my Bachelor’s degree was Creative Writing. Ten per cent of the mark for each class was awarded for attending tutes and taking part in class discussions. I showed up each week, having done the set readings and diligently prepared a list of possible topics and insights to contribute. The brilliance of Hemingway’s short stories is in their sparsity, in everything he doesn’t say! The lyrical genius of Murakami is totally undermined by his rampant misogyny! But then, when it came my turn to speak, I said I didn’t know, or I’d forgotten, or “what she said.” I learned that if I waited long enough, my ideas and contentions would be brought up in some fashion by some other person. We would all get to experience them eventually. So why did I have to endure the struggle of physically saying the words?

I didn’t realise it then, but this was only reiterating a belief I had held so deeply for so long: that nothing I said was really worthwhile, anyway. Hearing my thoughts expressed by somebody else, often much more eloquently, made me feel like the words I spoke weren’t worth another person's time and effort to hear.

Skin prickling and eyes lowered, I avoided saying anything at all, if I could. Each week, I disappointed myself all over again.

It was never as much about embarrassment as it was about shame. The shame of not being able to do this basic thing that everybody seemed to be able to do. The shame of making somebody wait – to work – to hear what I had to say. I would watch the timer counting down in their eyes, their facial features rearranging into annoyance – sometimes subtly, sometimes not – their patience dissipating. I watched them avert their gaze, embarrassed. How long before I said, "don't worry," and stopped trying? How long before they stepped in to help?

The biggest shame, I think, was in accepting the words they provided me. I chewed over them and I regurgitated them, as though they were my own. Not because they were correct or because they were better, but because they were easier.

But there's nothing easy about stuttering. It's hard to avoid it, exhausting trying to hide. It’s always there, in every utterance, in every conversation. But the act of stuttering is exhausting, too.

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At 25, I enrolled in a Masters of Speech Pathology course. This is fast-forwarding through a few years of antianxiety medication which, as an unintended side effect, increased my fluency in spades. Following this was a flood of experiences and achievements that I had previously ruled out as ever being viable options, such as acting, traveling solo, and making friends with strangers.

In one of our first lectures, the head of the course said something along the lines of, "You will be doing a lot of talking in this course – presenting, role play, and so on. If that is a problem for you, maybe you should rethink your decision to be here."

Cold fear gripped my heart and the urge to run was overwhelming. But I looked around the class and saw those same expressions of fear on most other people's faces. If they could do it, I could do it. And I wanted to.

I knew my fluency patterns well at this point – I knew that I didn't stutter when I was presenting something pre-prepared, or when I was playing a role. I thought that I could take on the role of speech pathologist and fake my way through, as I had done before. Even playing the role of speech pathology student kept me fluent for a long time around friends, until I started to become comfortable and let my guard down, to be myself around them. But I continued to work hard to hide it.

I was thrown into the world of stuttering so quickly. I had to draw a clear line between my experience as a person who stutters and my experience as a speech pathologist, learning about and working with people who stutter. I had to distance myself, to sit atop the stuttering iceberg and examine each tiny icicle sparkling in the sun. The alternative was an almighty overbalancing, being flipped into the depths of the arctic cold and held down by the massive and inescapable body of the iceberg, hidden below. And the risk of seeing myself down there in the depths.

This journey has been enormous for me, and so recent. Sometimes I forget that, just three years ago, I was desperately trying to fight back the tears in our lectures on the “impact of stuttering." It brought up so many unresolved feelings from my high school years. Social withdrawal and isolation, bullying, depression, self-harm, suicidal ideation, anxiety, self-blame. Shame.

I fled to the bathrooms for a tactical cry so that I wouldn’t bawl my eyes out in front of my classmates. I was crushed to see the statistics about the prevalence of bullying and mental health conditions in people who stutter. I was terrified that I'd get found out as an imposter among my classmates. And I was devastated to learn that there were no longer any cures for me, as an adult.

To see it laid out so clearly on the lecture slides was confronting. On the one hand, so neatly capturing these feelings I knew well but found so intangible and hard to express. On the other hand, accepting yet another person's words to describe my own experience. Another moment of shame to add to the rest.

I spoke to my lecturer and placement supervisor about my experiences. I opened up to some close friends. I asked my family what they recalled from my childhood. Through writing, I tried to piece my history together. I started to explore what I’d spent all these years avoiding. My writing from this time was full of self-blame and self-hatred. It was full of shame.

And then Rich Stephens came to speak to us about his experience as a person who stutters, about how he came to terms with his bad relationship with his stutter. It made me realise that I had a bad relationship with my own stutter. It was something “wrong” with me, and something I’d always tried to hide.

Circle of chairs, Chris Campbell

Acceptance didn’t even really cross my mind, I don't think, until my first big, public block during SAY: Australia while playing How about you?. I stood in the middle of the circle, each person’s eyes locked onto me. They were literally on the edge of their seats because as soon as I asked the question they would have to sprint to a new chair.

That "how" didn't come for an eternity. I spun around on the spot, avoiding everybody's eyes, squeezing my neck muscles and bobbing my head in my silent dance. It felt like an eternity, but it was probably actually 10 seconds. Eventually, my breathing resumed and the words tumbled out, and everybody leapt to their new chairs. I sat myself down and noted with satisfaction that nobody was looking at me like I was some sort of freak, or like I was, in fact, any different at all.

"That was okay," I thought. "That wasn't too bad." But my heart was thudding in my chest.

In the next round, my answer was a "yes," meaning that I was supposed to then stand up and try to claim a new chair. Still, I found myself seated and gripping my chair as though someone was about to try to take it from me. The thought of ending up in the middle – of speaking in front of the group again – was too much.

"That was okay," I reminded myself. "But I don't want to do it again."

So I stayed seated.

In my other roles – as a speech pathologist, as a vegetarian – I know that you can't ask something of somebody else that you aren't prepared to do yourself. Practice what you preach, and all that. I am getting better at choosing to stutter because that means choosing the words that I want to say, rather than just the ones I can. I am getting better at calling people out when they mimic or mock me, even if it's not intended badly. Because I want to take the hits so that the next generation of young people who stutter don’t have to. I want to help pave a smooth road for them. I want them to know that their voices are worthy of being heard, no matter how they sound or how long it takes.

After that first big block at SAY: Australia, I hung back and Rich said to me, completely genuinely, "Thank you for stuttering."

Thank you for stuttering!

I shrugged like it was nothing. But honestly, I think it was the first real step in this journey that I’ve found myself on.

Photo by Wendelin Jacober: https://www.pexels.com/photo/photography-of-bridge-1460280/

The journey to acceptance is nowhere near complete for me. I think I've only just made my way onto the path, and I see that it’s a long one.

I still have those instances in group conversations where I wait for my moment to interject and I plan what I will say and my mouth is getting ready to shape the airflow but, when the time comes, the sound isn’t there. Suddenly, all those feelings of shame come flooding back. I am different. I am different from all of you.

The conversation moves along and typically nobody even realises I had tried to speak. But I am on edge, carefully monitoring the group for subtle signs of judgement. I miss topic changes, jokes, and even personal mentions because my focus is elsewhere. All my energy goes into appearing calm and fluent, and protecting that. And then I ask myself, why do I feel so distant from everything and everyone?

Maybe it’s because I don’t ever really relax and just be myself. Maybe it's because I never really let people see me. I watch others experience the highs and lows and richness of human interaction behind my glass wall and I convince myself that I'm not welcome there.

And there it is again – shame. The shame of trying to change myself to fit in, to make it easier or more comfortable for other people.

So, no, I have not reached acceptance. But this strange series of events has led me to a place where I think about, read about, talk about, research, and treat people who stutter every day. Three years ago, I would never have believed it. And I wouldn’t change a thing.

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5 Comments

  1. Geoffrey Miller on 12 April 2022 at 9:45 pm

    Thank you Sarah,your story resonates with me and I’m sure with many others. I am almost 80 and about 98% fluent. It has been hard won. When I stutter now I almost don’t care. The days of rolling up in an ancious ball have gone, probably because I’m too old to care anymore. I have thought for many years that not enough was being done in treatment to address all those mind games we play to bluff our way through life. Thank you for laying them out to be seem I am sure many young people will benifiet from your work and I wish you well in all that you do.

  2. Wallace Eccleston on 28 April 2022 at 12:14 am

    Hi Sarah,

    Your experiences have many similarities with mine.
    I stuttered badly until I was 47 years old, which was compounded by a lack of confidence.
    Then, quite miraculously, I was having a long conversation with a friend at my workplace, and I realised afterwards that my fluency had been very good. This was self-reinforcing, and my fluency has improved enormously since.
    So 38 years later, I consider myself cured, although I do have occasional minor lapses. Never believe those who tell you there is no cure as an adult!

    Good luck!!,

    WDE

  3. Duong on 4 May 2022 at 10:46 pm

    Hi, im glad you posted this story of yours here. Im also a pws and i could relate to almost everything throughout the whole story!

  4. Lisa on 16 June 2022 at 12:39 pm

    Awww Sarah I cried reading this. It hit home big time. An iceberg I’d exactly what it is like. I’m 45 now and I’ve never been able to hide my stutter. God knows how but I trained and worked as a primary school teacher and stuttered my way thru relieving. Then I worked in a male prison as an officer. My stutter caused me grief and the embarasent and shame was awful. In both roles it had an unexpected benefit as well. It made me human to them. Most people felt for me. Some of the prisoners even told off new prisoners who laughed at me openly. I find humour helps too and being open about it.
    Good luck on your journey. Don’t be so hard on yourself.

  5. Leigh on 16 June 2022 at 5:05 pm

    I understood and felt every word you said. I experience the exact same feelings.
    Thank you for your blog.

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