Demystifying the Struggle to Speak

We live in an age where all kinds of hitherto stigmatised and alienated dimensions of human experience are being unearthed and brought out into the open. In spite of that, in such a world, I have come to realise that the particular difference with which I am intimately acquainted, that I have lived with my whole life is even now one that is often stifled in a corner, buried deep beneath protective layers in many peoples' hearts and not allowed to see the light of day. I came across a comment from one person with a stammer who called it 'a disability that has no home', and I could not have put it in better words. I know that I do not think about or perceive stammering in the same way that most people who have never experienced it do, and therefore I have a sensation of carrying within me a story, an unknown perspective that needs to be shared, which will not leave me at ease until it is told. But writing about this is not easy; it demands great vulnerability in order to represent it accurately, and there is always the fear that one will not be understood because the task seems a bit like attempting to illuminate and open up a hidden world which is usually invisible to other people. How do I ever make an onlooker understand the complexity, intricacy and nuance which is woven into the lived experience of this battle with speaking? How can I coherently bring together the bewildering, often conflicting thoughts and feelings that accompany a lifelong journey with a stammer, from childhood to adolescence to young adulthood? 

In his memoir ‘Life On Delay: Making Peace With a Stutter’, John Hendrickson writes, “I had spent nearly thirty years hiding from one word—the “s” word. I’ve spent paragraphs avoiding the act of typing it. When you’re young, you internalize that “stutter” is an ugly word. Your instinct is to run from stutter, to move the conversation away from stutter. Stutter is painful and awkward and something nobody wants to talk about.”

I perfectly understand what Hendrickson says, and it is incredibly ironic that someone like me who spent so many years fleeing from my stammer should want to write about it in such detail. But as one grows up, one inevitably gains tremendous insight into what stammering is and there comes a point where you realise that it is precisely the reluctance and unpreparedness to acknowledge and accept this speech problem, which causes all the problems– the fear, pain and shame in the first place. And above all, I have a burning compulsion to speak for the children who cannot speak for themselves; for when all is said and done, it is an unfortunate fact that it is not the adult, but the child with a stammer who suffers most of all.

Lack of awareness and understanding

I came across a comment on TISA’s (The Indian Stammering Association) website that echoed my own convictions, namely that most of the problems that children who stammer endure in school can be traced back to the total lack of awareness and understanding of what stammering is among the general public, including very well educated people. In India, people think and talk about stammering in a peculiarly unique way– they seem to see it as a bad habit, a lack of confidence, insecurity, a psychological issue etc. Occasionally, I personally experience some incident which reveals to me the alarming misconceptions and gaps in the way people think about this speech problem. For instance, I was recently traveling by train and my co-passenger was an old man, obviously well educated. He conversed with me and when he noticed my stammer, he immediately pointed it out and attempted to advise me about how I could get rid of it. He said he knew a lot about this problem and that it was caused by insecurity and a lack of confidence. He claimed it was easy to reach this conclusion because people who stammer clearly do not have any physical impairment or difficulty at all. "Therefore", he said, "the cause must be entirely psychological".

“Stuttering is a complex problem whose nature forever tempts people to offer simplistic cures.” 

• Dr. Joseph Sheehan

When they see it happening, I believe the onlooker tends to attribute a false and misleading simplicity to stammering. In her book ‘Out With It: How Stuttering Helped Me Find My Voice’ Katherine Preston explains this perfectly: “Unfortunately, stuttering is not always seen as a “valid” condition, whatever that may mean. All too often it is judged and seen as a personal weakness, a character flaw rather than a disability... It is unusual but not quite unusual enough. In most adults, the delivery of their speech betrays who they are or what they are feeling. So, in people’s minds, stuttering may look like something they have seen before, something they recognize in their own stumbled speech... Worst of all, it might seem like nothing at all. A well-meaning listener might brush it off as nothing, or tell you that they stutter, too, that they mess up their words when they’re nervous or over excited. It is kind, in a way; And yet it belittles the problem, it assumes that we are senselessly making a big deal out of something minor. The truth is that stuttering is a real problem with real casualties.”

A Window into Lived Experience

I have had a stammer for as long as I can remember. When I was a very young child, I desperately wanted to be normal and whole. But my stammer stood in the way of that longing. Everything else about me seemed perfectly fine, and all my instincts screamed that I was indeed normal. But every time I tried to talk, and found myself stammering, blocking and struggling, I was forced to confront that frightening part of me which contradicted my desperate desire to be normal. And there was one emotion which dominated all others as a response to this dissonance- a deep and pervading shame.

Recently, the British actress Emily Blunt, who herself has a stammer, said, "A stammer is like an imposter living in your body. Who doesn't pay rent. And completely and utterly misrepresents who you are as a person... It's nearly always misidentified as a nervous disposition or a psychological issue. This is wrong. This is wrong. It is neurological, it's biological, it's often hereditary, and it's not your fault.” When she compares this speech disorder to an imposter living in one's body, it resounds with me tremendously. In my childhood I remember reading the book 'Ella Enchanted' in which the main character is cursed, so that she has to obey and carry out, against her will, every order that is given to her, and comparing it to my speech problem. A stammer often feels like that, as if your speech at times will not obey your will, but is under someone else's wild and unruly control.

Perhaps, those around me, my parents, teachers and peers, also began to see my disfluent speech as something which did not align with the rest of me. I seemed 'normal' in every other way. I did very well at school, at studies and even extracurricular activities. Therefore, understandably, they felt that in order to do me justice, to be fair to me, they had to treat me as they would a perfectly normal child. As for me, I was in complete denial about my stammer. I tried to hide it as much as possible, often by not talking when I wanted to. And as I grew older, I began to resist attempts to discuss my speech or to bring any sort of attention to it. I dreaded and despised even the word ‘stammer’ and for a period of time I would react very badly if it was mentioned in my presence. As I said, I was desperate to not only appear normal, but to actually 'be' normal in my own estimation.

The Iceberg Theory

However, the tension between the very real and painful struggles that my stammer caused me, and the image that I and those around me tried to preserve, always festered dangerously beneath the surface. I believe this is what makes stammering such a lonely experience. In fact, people who stammer and experts who study and research on this subject, often compare the disorder to an iceberg, of which only a small portion is visible on the surface, while the larger portion lurks ominously beneath the waters. On the surface are the overt stuttering behaviors, while underneath lies concealed, the impacts of stammering- denial, fear, shame, guilt, anxiety, isolation etc. For example, my attempts to hide my stammer, only led to greater fear, worry, embarrassment and shame. Reality conflicted harshly with the illusion I wished to preserve. For a long period of time, I was terrified of being caught stammering, for fear that my shameful secret would be out. Thus, conversing with people, being asked my name, being asked questions in class, having to read aloud, the attendance every morning etc. caused me great anxiety and distress, since these were all potential situations for exposure, shame and embarrassment.

"I think the reason that the disorder of stuttering is so poorly understood, even by those of us who are intimately familiar with it, is because it strikes at the core of our humanity. We are inherently, intensely social creatures. Stuttering disturbs this nature, and thus to understand it, we must look beyond the sounds and syllables of the speech-motor system."

• Reuben Schuff, 'Stuttering: Inspiring Stories and Professional Wisdom’

  
  

The Variability and Impact of Stammering

I carried on like this surprisingly well for some time, until things came to a head and this false illusion of normalcy could no longer be sustained or preserved. I do not think most people know that one of the surprising features of stammering is its variability. The severity and frequency of the disorder and its emotional impact can differ from situation to situation and even from day to day. Not only so, it is often cyclical, whereby people experience a decrease in stammering for months altogether and then discover that it suddenly and inexplicably becomes more severe and acute than ever. Therefore, there might often be periods in the lives of people who stammer when the disorder becomes unexpectedly severe and distressing, and the usual equilibrium or normalcy of their social lives and mental states break down. In her book, ‘Out With It: How Stuttering Helped Me Find My Voice’, Katherine Preston writes, “Stuttering teases its hosts like no other disability. The blind are not periodically taunted with momentary sight, and the physically disabled cannot get up and stroll to the shops now and again. “Much of the time your speech may be uninterrupted, and then suddenly it is disabled for a moment,” explains speech therapist Phil Schneider. “That creates a startle effect. It startles you and it startles the listener. Because we unconsciously have expectations, we think that the world is linear. We think that what you see is what you get, that the way you were yesterday is the way you’ll be today.” With stuttering nothing is quite so straightforward.”

When I was twelve years old, I contested in and won the school elections for head girl of the upper primary section. I was given the responsibility of reading the pledge aloud every day in the morning assembly. Until then, I had been able to manage public speaking quite well with sufficient practice. But unknown to me, my stammer was about to enter a very severe and distressing period. So the first time I stood in front of the audience of students and teachers as the Head Girl, I found that I could not utter a single sentence smoothly. I blocked and struggled on almost every word. I had never stammered so badly in my entire life. For at least a month, I had to keep saying the pledge in the assembly, and each time my speech failed me. The anxiety, humiliation and despair that this experience involved for a child who had high dreams and ambitions, and loved leadership and public speaking, cannot be put into words. Thus it became impossible to deny or run away from the brute reality of this speech problem any longer.

The important takeaway here is that I fully understand and sympathize with the impulse to trivialize this speech problem and make light of its gravity or the impact it can have on a child’s life, because that was what I myself (and the people around me) tried to do for the greater part of my life. But having experienced it myself, I can say that it is the expectation to be normal (a pressure which comes from oneself as well as from others) which sets a child up for repeated failure because it is a standard which is impossible to reach. In his paper ‘Stuttering as a moral failure’ Dane H Issacs writes, “For example, in certain social situations people who stutter may project almost fluent speech, whilst in other situations they may show significant levels of dysfluency. As a result, people who stutter possess what Watermeyer and Kathard (2016) termed as a split, complex disabled identity in society whereby they are neither clearly abled nor disabled. Therefore, it is commonly assumed that stuttering is not absolute and can be voluntarily controlled. Accordingly, expectations are often placed upon people who stutter to perform or communicate on the same level as able-bodied individuals.”

I have often thought, as I still do, that one of the things which is uniquely difficult about stammering is that unlike many other disabilities (which I am not equating to it), a child with a speech problem is haunted by the constant expectation, both from himself and the people around him, to do exactly that which he struggles to do, i.e to speak fluently because he is indeed physically capable of speaking normally. But in his daily interactions, when he has to introduce himself, when he is made to read aloud in class, or conduct a conversation, he finds that contrary to his physical or biological capacity to speak fluently, he is often not able to get his words out and finds himself blocking and struggling in his effort to speak. In such situations, his dominant impulse is to blame himself and feel ashamed and embarrassed. The child feels that the impression he has made on the onlooker is that something is wrong with him, when in fact he feels and longs to appear normal. The president of the American Stuttering Foundation, Jane Fraser says, “From the time you wake up until the time you go to bed, the fear of stuttering is with you. That’s the emotional impact on the child who stutters.”

The Struggle to Understand Stammering

There are many disabilities and differences in this world which I am certain cause unfathomably more pain and hardship than stammering, but nevertheless there is a fundamental difference which I believe is remarkably difficult for people who don’t stammer to comprehend. It is only the child who stammers who is constantly kept guessing, forced to figure out for himself the enigmatic, inexplicable nature and character of this thing that he is dealing with. With most other conditions, there is a diagnosis, an explanation of what it's all about. But with stammering, a child is never given the privilege of coming to such an easy understanding and acceptance of his disorder. There is always a shroud of mystery, secrecy and avoidance surrounding it. Perhaps it can be said that the child feels like he is always walking a wobbling, unsteady tightrope on the border between two worlds– between stammering and fluency. Katherine Preston says, “For much of my life I believed, unfairly, that it was simply a matter of willpower. Over the years I would watch myself fail at fluency, and every morning I would wake up with the dangerously impractical resolution that today would be different, that I would be stronger, that I would force my speech into submission. I stubbornly clung to the hope that one day I would wake up and the stutter would have simply disappeared.”

“I am not like other people. I must think differently, act differently, live differently - because I stutter. Like other stutterers, like other exiles, I have known all my life a great sorrow and a great hope together, and they have made me the kind of person I am. An awkward tongue has molded my life.”

• Wendell Johnson Ph.D.

Desensitisation and Acceptance

I have frequently been told that I should not expect special treatment or ask to be treated any differently from others because of my stammer. Honestly, I do not think I require any particular ‘special treatment’ either. Now the point I wish to make clear is that at my age, as a young adult who has to take responsibility for herself, I have progressed far in my attitude towards my stammer- though it still has its difficulties, I no longer feel unbearable shame and defeat when I stammer publicly, I am no longer terrified of my stammer and to a great extent I now know how to deal with the feelings which accompany it. However, what those who have never experienced a childhood of dealing with this speech problem might not know is that it takes an extremely long time to get desensitized to the act of stammering and its emotional impact. Desensitization is the process of losing your sensitivity to a particular situation through repeated exposure to it. I agree with Hendrickson when he writes in his memoir that while it is wrong to talk of overcoming stuttering, it is possible to overcome the fear of stuttering. Many people who have dealt with stammering echo the sentiment that it always gets better with age. When they say that, they do not mean that the condition itself will necessarily grow milder and fade into oblivion with the years (though it sometimes does); What they intend to convey is that as one grows older, the pain, embarrassment and discomfort caused by the stammer decreases. Therefore, as I said in the beginning I would reiterate that it is the child who suffers most from the effects of this speech disorder. In the documentary ‘My Beautiful Stutter’, a young person with a stammer, puts it this way, “The pain associated with stuttering is not based on your age, but on how long you go without knowing that it's okay to stutter.”

Help for the School-aged Child who Stammers

“Treating different things the same can generate as much inequality as treating the same things differently.”

• Kimberlé Crenshaw, Civil Rights Advocate 

Therefore, until a child is able to make peace with his stammer, which usually takes time, he might need certain accommodations in school– not to mark him out as different or to reinforce the idea that he has a problem, but in the simplest and most unsophisticated terms, just so that he might have a chance of being happy and enjoying his schooldays like his peers. As we know, children usually hate to feel different from their classmates or be treated specially, but there are small things (that do not require effort or resources) which can be done, that can make a huge difference in these children's experience of school. From the perspective of a school-aged child, one of the most stressful aspects of having a stammer might be the loss of control that he experiences in his daily life, when he is forced everyday to go through a series of speaking situations which causes him great fear and distress. Therefore, the simple act of giving him a sense of control by allowing him to choose when to speak and when to opt out (in a sensible and balanced way of course), can itself alleviate a child’s problems to a great extent. But the most important thing, and the whole point of this article is that the child's caregivers and those in his immediate environment must be thoroughly educated and informed about the nature of his disorder and the impact it can have on his life. Inorder to illustrate why this is so important, I will draw from one of my own experiences in school. There have been periods in my childhood when my stammer became so severe that I was at times unable to even start a sentence. During one of these periods, in class we would often be asked questions individually by the teacher and I frequently found myself knowing the answer but being (literally) unable to speak at all. One day when I tried telling the teacher that I could not say the answer even though I knew it, her response, though well-intentioned, was immediately to tell me never to say that I cannot do anything because of my stammer. As you might now be able to see, this kind of attitude is well-meant, but it is dangerously dismissive of the very real struggles that a child who stammers goes through. Many experts working with children who stammer say that it is always best for a teacher to have a private conversation with the child to discuss how he feels about his stammer and what help he might need in school. Therefore, the child does not have to feel that his speech problem is a burden he has to carry silently all by himself. Since bullying is common, it is also suggested that it could help for the child (if he feels comfortable talking about it) to give an informative presentation on stammering to his class, so that his classmates, who will play a huge part in his life, have sufficient understanding and empathy toward his differences.

“Openness lets in the sunlight which melts the iceberg, rather than keeping it hidden in the bitterly cold darkness that only helps it grow."

• Larry Molt (Advice To Those Who Stutter)

But ultimately, how does one help a child to accept his speech problem and feel that it is okay to stammer? For me, this drastic shift in my attitude took place when I started reading more and more online resources which provided information on stammering and introduced me to other people's personal experiences with it. It was then that I was first able to stop hating, despising and fearing my stammer. I believe what made this possible was that there was a great difference in the way the people around me, my parents, teachers and even my speech therapist talked about stammering and the way these websites and articles seemed to think of it. The people in my life talked to me about my speech in different ways, but almost everything they said failed to resonate with me. In all their explanations and advice, I found two noteworthy commonalities– the first was the underlying insinuation that the problem with my speech was not real, and the second was the ever present assumption that my stammer was a relatively minor flaw I was capable of conquering ('overcome' is the word with which I grew intimately acquainted), and in fact was expected to do before I left my childhood.

"Stuttering, feeling out of control, and not understanding why is a distressing experience. Without an explanation, these frightening feelings grow unabated. Having a rational explanation helps to stop the negative thinking and fear which exacerbate stuttering. Your personal explanation can be the basis of strength to explain your stuttering to others in an objective and dignified way".

- Gary J. Rentschler

The Science Behind the Disorder

On the other hand, the information I found online (usually from credible organizations dedicated to supporting and advocating for people who stammer, and to researching the condition itself) said as an objective matter of fact that stammering was a neuro-physiological disorder which can be traced to differences in the wiring of the brain, i.e neural defects in the brain regions responsible for speech production (to put it very simply). Through research involving neuroimaging, it has been discovered that this speech disorder is undeniably neurological in nature, meaning that there are visible differences in the brains of children and adults who stammer; however researchers in the field are still trying to determine whether these neurological deficits are the cause or the consequence of stammering. These findings are very recent and because of it, experts now recommend early professional intervention for children who stammer, in contrast to even a decade ago when parents would be advised to ignore the child's problems and avoid seeking serious treatment for it until he is a bit older. This is because the brains of young children can still be shaped by experience due to neuroplasticity, and this can be exploited to modify their neural connections through training and therapy. Stammering is common among pre-school children, but almost 80% of children become fluent naturally before 7 or 8 years of age. With every passing year, the brain loses its plasticity and it becomes unlikely that an older child will outgrow their stammer completely.

All in all, we can be certain that this speech disorder is too complex to be explained by one single factor such as anxiety, childhood trauma or emotional problems. Unfortunately, because all people normally demonstrate some disfluencies in their speech while nervous, it is easy to assume that stammering is psychological in nature. However, the temporary problems in speech that can be caused due to anxiety is very different from stammering as a neurodevelopmental disorder. When it comes to stammering, the anxiety and psychological maladjustments that are often observed in its hosts are not the cause, but the consequence of difficulties with speaking. A child's struggles with speech often causes him to develop fear and anxiety about speaking in social situations, which in turn makes the stammer worse, thus leading to a vicious cycle in which anxiety and stammering influence each other. It might be easier to understand this relationship if we think about another neurological disorder, Tourette's Syndrome, which also becomes more severe with anxiety (although it is obviously caused by brain differences).

In the effort to scientifically understand the nature and root cause of this speech disorder, it is also very important to consider its strong genetic component. It has been found that stammering can run in families and parents who stammer are more likely to have a child with the same disorder, even when the parent is now able to speak fluently. Scientists have also identified genes which are linked to stammering, although the research in this area is not conclusive and has a long way to go. Therefore, it can be concluded that some children are born with an underlying genetic predisposition to disfluency, which could be offset by stressors in their environment.

For me, understanding the science behind this speech disorder helped me greatly in accepting it, because one of the most frustrating experiences of having a stammer is encountering the ease and carelessness with which people reduce it to simplistic and misinformed explanations, which reflect badly on me as a person or on those I love. As John Hendrickson says, “I felt relief in discovering that stuttering was wrapped up in the complex, plastic development of our brains. I was reassured to hear that, although stuttering may be subject to psychological influences, it was a complex, biological condition. At the base of it, it was a relief to know that stuttering was not my fault, that it was not my parent’s fault, or anyone else’s. I had simply been born with a neuroanatomical weakness, nature had not chosen to give me effortless speech.”

Therefore, there is credible, scientific research available which provides satisfactory conclusions on what this disorder is, and how it is caused. In the 21st century, there is no longer any need for us to depend on our instincts and form our own beliefs and assumptions about what it could be and how it can be explained.

The Importance of Openness

And the thing is, when it comes to a young child, his parents, teachers and other caregivers' instincts are to do exactly the opposite. We feel compelled to protect his feelings by tiptoeing around his difficulties, never disclosing to him the true nature or details of what he is dealing with. So we try to trivialize the problem by saying for instance things like, “Oh sometimes even I stammer when I'm nervous.” Therefore, the child is kept in the dark, trying to figure out and understand his stammer all by himself. When adults seem reluctant to talk about something, the child only begins to feel that the problem is so terrible that it should not be discussed. In his article ‘A Father's Advice’, a professor Rick Arenas rightly says “I am convinced that talking about stuttering is the single most important thing that a parent can do for their child.” Nevertheless the path towards acceptance is complex and fraught with pain, frustration and hindrance. It is not done in a day, it is not easy. Yet, as a speech therapist interviewed by Hendrickson, Dr. Byrd says, “I have worked with thousands of people who stutter, and they don't ever say, ‘If only everyone would have just ignored my stuttering, if only no one would have talked to me about it, if only I could go back in that speech therapy room and spend more time on how to say those words, I know my life would be so much better’.”

Speech Therapy

So what about speech therapy? Unlike what the general public might assume, speech therapy is not really a cure for stammering. In speech therapy, the child or adult is taught tools and techniques to help them speak more fluently and very often the focus is on masking the stammer or keeping the onlooker from realizing that the person has a speech problem. Sometimes, the compulsive desire to create fluent speech is so desperate that there are techniques which teach the client to speak in a different voice (like a robot for instance), to sing the words etc. There are also many helpful techniques which focus rather on helping the person talk with lesser tension and struggle. For a child, it is not always easy to use the tools he learns, especially in real life situations which involve anxiety and emotional discomfort. Often, intensive speech therapy can result in a temporary period of perfect fluency and I know from experience and from the testimonies of others that when the stammer comes back again, it causes even greater discouragement and sadness. But now, many professionals and speech therapists are envisioning a better way in which the child or client is helped to accept their stammer and to deal with the feelings that surround the condition, along with the usual techniques that aim at fluency. Dr. Byrd says, “If all we’re doing is focusing on fluency, then we’re setting them up for failure in a way I think we’re responsible for.”

Conclusion

Many people attest that they flourished and thrived in life, not inspite of, but because of their struggles with speaking. However, inspite of this positive outlook, I firmly believe that the burden of stammering is not one that a vulnerable child should have to carry all by themselves. Fyodor Dostoevsky writes, "You must know that there is nothing higher and stronger and more wholesome and good for life in the future than some good memory, especially a memory of childhood, of home." As an adult, my problems with speaking are primarily my responsibility, but the hardships and challenges of a child who stammers is OUR responsibility, collectively as a society. The weight of this speech disorder can so easily be lightened, if it is shared by others in a child's life through greater awareness and understanding.

“Only if we understand, can we care. 

  Only if we care, will we help. 

  Only if we help, shall all be saved.”

• Dr. Jane Goodall (40 Years at Gombe)

Helpful Resources & Links:

Life on Delay: Making Peace with a Stutter (Book by John Hendrickson) : https://dokumen.pub/life-on-delay-making-peace-with-a-stutter-2021054996-2021054997-9780593319130-0593319133.html 

Out With It: How Stuttering Helped Me Find My Voice (Book by Katharine Preston)

Wildoak (A children’s book by C.C. Harrington)

https://kids.frontiersin.org/articles/10.3389/frym.2019.00153#:~:text=Stuttering%20is%20like%20an%20iceberg,stuttering%20that%20we%20cannot%20see (Stuttering and It's Invisibility)

https://msutoday.msu.edu/news/2018/understanding-the-mystery-of-stuttering#:~:text=Research%20at%20Michigan%20State%20University's,can%20have%20serious%20emotional%20consequences (Understanding the Mystery of Stuttering)

https://westutter.org/myths-about-stuttering/ (Myths About Stuttering)

https://www.stutteringhelp.org/ (The Stuttering Foundation)

https://stamma.org/ (British Stammering Association)

https://stammer.in/home/  (The Indian Stammering Association)

*Stuttering is the term used in American English while in British English it is called stammering. Developmental stuttering is now medically termed as ‘Childhood Onset Fluency Disorder’.

* Note: This article does not contain all aspects of my experiences with stammering or the full details of my history with it. It is meant only to create more awareness and understanding for children who stammer.