About the author:  Beata Akerman is a Doctor of Philosophy, has a B.A. in social work and a degree with a specialisation in social work with people with special needs.  She is the author of the children’s book Izabela, a story about a princess who stuttered, which in 2010 received a Special Award of the Jury awarded by the Municipality of Schwanenstadt, Upper Austria, at its 8th International Contest for Best Children’s and Youth Book having the title “On the Wings of a Butterfly and a Swan”. Her graduate thesis entitled “Life with a Speaking Disorder through the Eyes of People Who Stutter” was awarded the Prešeren Award for Students of the Faculty for Social Work. She is a founder of the self-help group My speech – my peculiarity that offers help to people who stutter. She is employed by the Anton Trstenjak Institute of Gerontology and Inter-generational Co-existence.

“Why don’t you cure yourself of stuttering? Doesn’t it bother you? It would bother me if I were in your place.”, “Go let your tongue have a good stretch!” and “You stammer? Interesting, but you look completely normal on the outside!” I could give you an almost endless list of rude comments made by people I have communicated with and their questions about my stuttering. Occasionally somebody asks me whether I am sad when I get mocked for my stammering or get other inappropriate reactions to my speech. Do they expect that I would not mind? Would this be at all possible? Is it possible not to hear someone’s laughter, to forget about their caustic remarks? Many people forget about the power of the words they say, words that for some may be forgotten in the same moment and for others locked inside them for the rest of their lives. Words influence our self-image. Words empower or encourage us. At the same time, words can destroy us and take our last hope away.

I am 31 years old and I have stuttered since I was four. Since childhood I have heard many a pungent remark and experienced countless moments of ridicule and humiliation. But such inappropriate responses to my stutter are part of my everyday life. The lack of information about the problem of stuttering in Slovenian society results in the insistence of the latter on strongly rooted prejudice often expressed in discrimination that, in turn, closes many doors. However, this time I will not speak about discrimination. This article will lead the reader through my typical everyday experience. I will speak about my pleasant and less pleasant memories and about how I never give up. I never did and never will!

Day in and day out

My fleeting experience is that people with whom I communicate react to my stutter with a fixed stare which in the next moment is joined by looks, the exchange of glances among other people present, the pulling of faces, and not so rarely smiles. Non-verbal communication hurts just as much as words can hurt. When it is joined by words, the sense of being humiliated and being ashamed is unavoidable.

When I communicate with some people I can feel their discomfort when they hear me stutter. Although most of them try to conceal their feelings by diverting attention, some express quite clearly that they do not want to listen to me. The following experience occurred to me in a small shop. I asked the shop assistant, who was putting new items on the shelves, for a magazine. Because my spasms were too strong, I only managed to utter the first syllable of a word, which I then repeated several times. She gazed at me, turned away and after saying “Oh, shut up, will you!” continued putting items on the shelves.

Some people with whom I spoke had a good laugh about my stuttering. I’m also often mimicked and mocked. Particularly painful are those words that gave me a sense of being useless and incompetent. My academic title is Doctor of Philosophy, I am a university graduate social worker and hold a degree with a specialisation in social work with people with special needs, but for this middle-aged gentleman this was no obstacle to asking me: “Oh, my, while I’m listening to you like that, I cannot help myself asking: have you completed any schools? You probably finished elementary school, didn’t you, but that’s it. Right?”.

Many people with whom I communicate, most likely believing that I will either not understand what they say or I cannot hear well, speak very loudly, use short and easily understandable sentences, and pronounce their words slowly and distinctively while accompanying them with matching gesticulation.

Some time ago I had to have my teeth X-rayed. The employee at the health care centre told me that I had to take off my jewellery as well as my cardigan that had a zipper. While I was taking my jewellery off, I asked her something related to the procedure. At that time, my speech was heavily blocked. She stared at me in surprise. After a moment of silence, she nodded, speechless, in response to my question. Visibly confused, she asked out loud: “Are you…” and, instead of finishing her question with words, she made a half circle with her hand over the stomach area, which could only indicate a pregnant belly. I answered that I was not pregnant, whereupon she tapped with her fingertips on a big device, pointed at her belly, and said loudly and clearly: “Harmful!” She then instructed me, again only starting off the sentence: “And now …”, while showing the rest of it with motions. She made her hands look like they were holding on to handles, opened her mouth wide to show that I needed to bite on a special short stick protruding from the apparatus, she explicitly showed the bite, and then closed her mouth. In order to make sure that I understood the instruction, she repeated it once more. While instructing me, she nodded frequently and asked: “Yes, yes?” as if she wanted to check whether I was following.

Judging by their responses, some people see me as a big, underage child. I had the following experience at a post office. I approached the counter. The clerk asked me how she can help me, and then I felt a spasm coming. I tried to say the words, but the spasms were too strong. The clerk stared at me in surprise. When the initial spasm had relaxed a little I told her, stammering, why I had come, and the clerk took the form which needed to be filled in, and continued: “Look, this is the form you need to fill in. Here, on the right, you write your name and surname, and under that your permanent address, you know, the address where you live. On the left you write data about the recipient, and you sign below. Just take your time, here’s a pen, and if you need help, come and ask me”. And in the end she asked loudly: “Will you manage?” With the form in one hand and the pen in another, overtaking other people waiting and either smiling in pity or nervously looking around the place, I left the counter and went to a desk where I could complete the form. When I had done that, I stepped into the queue again. I handed the form to the clerk who smiled at me heartily as if to a small child, and told me in a child’s voice: “You see, you could manage, couldn’t you?”.

The lack of knowledge about the problem of stuttering leads people to think that something is terribly wrong with someone who stutters. Some people think that stuttering is an indicator of different diseases and psychological disturbances.

Recently, I had a routine medical check-up. First, I stepped on the scales which showed my height and weight. Then the doctor measured my pressure, checked my breathing, felt my stomach, and asked me to stretch out my hands, hold my fists, and then he tested my hearing. Everything was OK. He then invited me to sit down. He asked me some questions and while answering one of them I stuttered a little. Without any further ado, he took out a large book on psychiatric diagnoses. He started to leaf through the pages and wrote down different codes. Lasting for less than five minutes, the check-up ended here. In a few days I received the diagnosis. To my great surprise, I read this: “obsessive compulsive disorder”. The next day I went to the doctor again and asked him for an explanation. He told me that he had noticed my stutter, and that the stutter indicated the presence of an obsessive compulsive disorder. I needed a long time to eventually prove him wrong.

Equally frequent is the belief that stuttering is a sign of alcoholism. Some years ago it happened that I was buying a ticket on a train, and I stuttered heavily. The ticket collector watched me in silence for a while and then asked me: “Why, brat, you drunk, ay?” Among other things, my stuttering was a clear sign of me being a drug addict for one doctor who understood my stuttering and an allergic reaction I then had as indicating an abstinence crisis.

I have very frequently heard remarks such as how is it possible that after so many years I have not got a grip on myself and done something to stop my stuttering. I have been told it is not difficult, all you have to do is decide to quit stuttering. The question I was once asked: “Can’t you learn to stop stuttering?” implies that someone first learns how to stutter and then all they have to do is un-learn it, and the problem is solved. How simple, and what a pity I did not know this before!

There is never a short supply of those wishing to give me good advice. My ears are overflowing with useless advice on how you need to breathe, speak and open your mouth, claims about the soothing effects of herbal baths and how you should detoxify your organism. Many people try really hard to help me during spasms, but their help is far from adequate. Their attempts include them speaking instead of me, making phone calls on my behalf and/or without permission, or providing answers to questions they have just asked me.

I do not need pity, I need understanding and patience 

I appreciate people who understand me, rather than those who comfort and pity me, because this does not help me. There is no need to think of how to help me. Just listen to me and give me some more time so that I can complete my thoughts. I do not like when people try to guess what I want to say or when they finish my words and even sentences since they do not really know what I want to say. I had a classmate who repeatedly wanted to help me in this way, and even though I asked her to stop she did not. So one day I decided to turn the tables. When she was describing an experience of hers I started to finish her words. She angrily asked me what I was doing, and I told her: “I thought you liked it when somebody finishes your sentences for you, and that this would help you”. She replied that she found it disturbing, and I said: “Well, now you see how I feel when you finish my words”. Only then did she realise that her help was a hindrance, and since then she has stopped finishing my sentences.

Over the past few years I have been visiting Slovenian schools, informing children and teachers about the problem of stuttering. When I ask children how they would help another child if they noticed that he or she stutters, they tell me they would let this child finish their words, and would help them if they wanted it and in the way in which they wanted it. They would not decide on this on their own since they do not know what would help.

I will conclude with an experience which will stay in my heart forever. I remember a group of children who had asked me if someone who stutters could read the TV news. Then a boy spoke up and said: “Of course they can! The news would just take some more time. You cannot help it, you need to wait for the presenter to finish reading it”. This boy was seven years old.