About the Author: Grant Meredith lectures in Information Technology for the School of Engineering & Information Technology at Federation University Australia and is the Associate Dean of Student Retention and Success for the Faculty of Science and Technology. Grant leads the Technologies for Empowering People for Participation in Society (TEPPS) programme which aims to enable the lives of people the world over through the radical design of software and hardware solutions. Grant is an active researcher and presenter within the fields of educational equity, assertive technologies and emerging technologies. Grant is actively engaged within the stuttering world and also sits as a community representative on Speech Pathology Australia’s Ethics Board. In the stuttering world he is seen as a “triple threat” as he blocks, repeats and also prolongs.

A world that understands stuttering? Quite an interesting question to begin a conference and an article with. For this initial question implies that the world does not in general understand stuttering and needs educating. But educating to what degree and how? Does the world know more about stuttering than what we think? Is it us, the people who stutter, who also need educating? I think it is a case that the entire world, not just people who do not stutter, need some further education about understanding stuttering and in education in different forms.

If you are a person who stutters who is reading this article, think deeply about what you truly know about stuttering. Honestly think about what you know about stuttering beyond playing host to the condition yourself. For most of us who stutter I would say that yes we are experts at the lived experience of having a stutter and at least can talk about its personal effect from purely an individual level. But even between individuals there can be marked lived differences and also commonly experienced norms. The lived experience is shaped alongside other factors, such as family upbringing, social interactions, cultural factors and many other influencers. These differences of life experiences lead to such rich, interesting and often heated debates within stuttering circles around many topics, such as the value of therapy, early intervention and even levels of severity. But apart from living with a stutter, very few of us who stutter really know a lot about stuttering from a scientific view.

This lack of expertise around what it scientifically known about stuttering, current states of therapy/treatment and what research is finding, often makes us as a community of people who stutter fairly ignorant at times. We often believe that when it comes to stuttering, that we know it all. To present a different case would be to say that a person who is a paraplegic has in turn complete expert knowledge physiologically and medically about the condition, purely because they may have had an accident and has spent the last 20 years of their lives using a wheelchair for mobility. This is not the case in general, but yes they do have the expert lived experience.

Now there are some amongst our ranks who are speech pathologists who focus on stuttering and/or researchers in various areas of stuttering, who of course have more knowledge beyond the lived experience. Keep in mind that not all speech therapists have expert knowledge about stuttering themselves. But few of us take the time to try to learn more about what science actually knows about stuttering, where new validated knowledge is emerging and in fact, how academic research works. Once before a radio interview discussing a project that I was working on, I made it explicitly clear to the interviewer not to ask me any questions about stuttering, including origin and treatment. Why, you may ask? Because I honestly have little knowledge in these areas and did not want my stuttering to be any form of focus within the interview. Also I did not want to mislead the public by presenting them with uneducated and possibly unsubstantiated views about such topics.

I also have a responsibility as an academic, to discuss the evidence trail and in the area of stuttering, I am not up with all the current research. In fact I am an academic and researcher in information technology. So perhaps it is time for us all to start to learn more holistically about stuttering while looking beyond the likes of Huffington Post articles, personal blogs and YouTube “how to stop stuttering” videos. When researching stuttering, look at a wide variety of views and sources, but most importantly, look for information which is credible. At least use Google Scholar to view the abstracts of published studies and try to understand the reasons for attributed limitations of published studies. Also view the websites of credible stuttering organisations who should have up to date general information about stuttering and links to credible resources. When reviewing speech therapy or some type of speech management program, look for people who have been involved with the program/course. But not only the people who it seemingly helped. Talk to the people who the course did not seemingly work for, those who it did work for and those who may have been deterred from continuing the therapy/program. Talking to the “successful” clients and graduates of speech therapy and programs only presents you with a very biased view. Some of whom have vested financial interested in you engaging with the program and others simply wanting to spread the word of their own successes, and expecting the same results for all as a result. Talk to all these individuals about how their life and speech has changed long term, for that is where success truly lays.

It is quite easy to make a person sound fairly fluent during an environmentally controlled short intensive speech course with lots of confident building, regardless of what program/technique was used. But to maintain the fluency long term is a challenge. Of course long term success may not hinge at all on fluency or eloquent speaking. Success may be measured in part concerning gaining social confidence, part taking opportunities previously avoided, and perhaps simply asking for a coffee unaided. In fact I will openly offer a weekend to anyone who wants to visit me in Australia. You are welcome to stay in my house free and over the weekend I will coach your speech. You will become very fluent and confident. But what happens beyond Sunday night is on your shoulders.

But then we come to the general public understanding stuttering. In my opinion the public are not as uneducated as we tend to think. In fact, the general advice that they may give us, when they verbally encounter us or talk broadly about stuttering, reflects a somewhat informed societal knowledge of stuttering as a condition. This advice given to people who stutter by people who do not stutter is often somewhat aligned to methods used by established evidence-based therapies and also popular non-evidence based programs. For example:

• Take a deep breath before talking: Some techniques to help shape and manage stuttering teach exactly this. To stop and take in a breath. Programs based around costal breathing techniques are a prime example;
• Think about what you want to say before talking: Some techniques teach a person to mentally formulate their words before speaking;
• Stress causes stuttering: Research shows that anxiety can aggravate the stuttering condition in some people who stutter and in turn, influencing the chances of making their speech appear more severely impacted;
• People who stutter are shy and self-conscious: Research shows that people who stutter are more likely to be diagnosed with some form of social phobia;
• Slowing your speech will help: Well again some techniques, at least to begin with, preach this as part of their technique to slow down the rate of speech and focus on the fluency shaping to come.

These common societal facts and assistance advices about stuttering are in fact at times quite accurate and have been built over a long span of time of interacting with people who stutter. Not out of pure ignorance. So be a little patient and understanding when offered such advice. Of course there are also many commonly placed myths about stuttering grounded with ignorance. Myths often promoted by some people who stutter. For example:

• Children who stutter are imitating a stuttering parent or relative: But, having said “ignorance” earlier, it is known that stuttering is genetically evident in some families. If stuttering was contagious though, then we would be the speaking majority;
• Stuttering is just a habit to break: Wow, I guess a habit a lot harder to stop than giving up smoking;
• Telling a child that they will grow out their stuttering. Well, a lot of children do naturally recover from stuttering;
• You stutter because you were tickled when you were a child: If so, the world would be vastly more populated with people who stutter. I would then also refrain from exposing children to clowns. But having said that, clowns are a phobia for many people.

It is so easy for us to sit back and claim to be a victim of a world that does not understand and wait for that world to change for us. What we as a community need is to be proactive and do something ourselves about it. But we need to be educated ourselves. In turn we need personal and organisational champions to lead the way. We need to work together with researchers and therapists, in order to inform their knowledge about stuttering from a lived view. When being offered advice from a member of the public, do not automatically assume that their advice is stupid and rude. In fact they are generally simply trying to assist us when they see our struggles. With a little understanding and knowledge we can all help to create, shape and educate a world which understands more and more.