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.

A popular saying exists with many variations which states that “Pride goes before a fall”. But perhaps in the case of the global stuttering community it could be seen that a fall has occurred even before general pride has been felt? From my point of view, pride of being a person who stutters has only ever been positively discussed or promoted within small circles of people who stutter, let alone promoted outside to the general non-stuttering public. The pure idea that you can be proud of the person that you have become and incorporate your stuttering into your identity in a positive manner is such a debatable topic and often the ember which flares very heated communication exchanges amongst people who stutter.

So what is the “fall” you may ask? I propose that the fall is the lack of general unity within global stuttering community and the resulting lack of pride within itself and members about being people who stutter. Now, I am not stating that there is a global stuttering community at all, because I think there are communities of people who stutter bonded by a stuttering organisation or social media group of some form. In a sense a loose community of communities. This coming together of people who stutter usually occurs from a point of support and is often localised to a country, at times perhaps a Facebook group or even due to membership of a evidence-based or not speech management system. The large numbers of people who stutter who join social media platforms and seem unaware of organisations like the International Stuttering Association, Speech Easy Association and other global stuttering bodies seem quite large. In growing numbers, people who stutter are joining social media-based support groups to seek support from other people who stutter, and in turn are often surprised by the amount of help at hand. Often from my own observations these new members frequently comment that they have never spoken to another person who stutters in their life and seem in awe of simply being able to join a community of like people. Sometimes though these new members are faced with walls of heavy opinions about stuttering being only a negative trait, which always needs to be controlled and eventually eliminated. I have witnessed new members in some of these groups state that they were proud to be a person who stutters and then more often than not they are faced with a barrage of counter responses. But I have also witnessed this like reaction at times to many posts which elude to “acceptance” of one’s self as being a person who stutters. Bu imagine yourself as a new member finally finding a community that you can identify with and then being confronted with a walls of negativity focused around issues that you yourself are coming to terms with perhaps in a more positive manner than some other more established members.

So let’s begin this journey with a look at what is meant by “pride”. While the global disability pride movement is growing stronger every year with many more disabled people and support networks accepting and getting behind the word “disability”. The term “disability” is slowly turning from a shameful and dirty word into a word that is being spun and seen as a positive attribute for many. Advertising campaigns are continually being rolled out loudly and positively promoting disability around the world and not promoting a disabled person as a victim of their impairment. Disability pride is fast gathering positive momentum and in turn is attracting positive media attention. Governments and people can clearly see how supported and understood individuals with needs can become contribute highly to society and with a sense of pride about who they are. Overtly there seems to be little in terms of a global push for stuttering unity or pride amongst the splintered and divided stuttering “community”. Yet stuttering is a disability and why cannot we accept that some people who stutter may have a sense of pride within themselves for various reasons intimately linked to and at times influenced by their stuttering? Why can the disability movement promote itself globally with pride while being so accepted and positively promoted through media? Yet stuttering communities are often refraining from wanting to install such pride within their memberships and media portrayals. Yet in turn we all complain about negative media-driven portrayals of people who stutter and the general community misunderstanding about stuttering.

Pride

Pride is difficult to clearly and cleanly define and I do not want to get deeply philosophical about it. I view pride in the context of having self-praise for who you are and for the choices that at times you may have made for your life. These fulfilled feelings revolve around self-characteristics and personally steered decisions including key achievements. Often these positive feelings are as a result of praise from others and/or positive self-reflection resulting in a deep feeling of personal ownership for the praised. Then how does “pride” apply to stuttering and why is it such a divisive term? It is such a debateable term because “pride” is closely aligned to “acceptance” which itself is an often combative term to throw around within stuttering circles. A point of research for you the reader is to look at the strong deaf pride movement which exists worldwide. I do not support the rigidness and divisiveness that the deaf pride stance has caused within general deaf culture and do not suggest such a push within the stuttering community. However, I do support the general pride which sits within deaf culture in terms of being proud to be a person who is deaf, as I do the glowing pride associated with the disability movement in general. Put one question into the back of your mind as you continue to read this paper “Does a “stuttering culture” even exist?”

Pride in terms of stuttering can take many forms and is often misunderstood and misinterpreted often having a direct alignment with the growing global stuttering acceptance movement. Pride can be for someone as simply identifying as being a person who stutters. But that does not mean that the person who stutters cannot strive to better their fluency if they choose to via therapy or other forms of fluency techniques. Having a sense of pride revolving around that fact that you stutter does not stop you from working on their speech. Pride does not stop anyone from wanting to better their situation in life in a form which suits their life goals. Then why not be proud for having a stutter? It was not your choice to have one, and to be honest it is time for people who stutter to stop framing stuttering as such a solid negative within their own stuttering communities. It can be daunting enough for some people who stutter to seek support without walking themselves into a larger wall of negativity associated with the way they speak. Stuttering is not a weakness and nothing to be ashamed of. Personally I view it as a characteristic of who I am. In fact I dare anyone reading this to walk into a disability pride movement meeting and tell those there to stop being so proud of who they are and what they have achieved. I doubt they would be welcome for very long for adopting such a closed minded and arrogant attitude towards difference. You should be so proud of who you are and what you have achieved despite of having a stutter. In fact for many readers I think if you reflected long enough on your life journey so far then you would be very proud of who you have become and achieved. Stuttering is possibly perceived as a greater weakness within our own stuttering ranks than it is in the wider world. The fact is that in a stuttering community we all are people who stutter regardless of our life directions. We all have our own unique life journeys, achievements and goals, all of which have in some way been influenced by our stuttering. Yes influenced, but not caused by our stuttering. So in fact your stuttering has supported you, the person that you are today and will become into the future. But stuttering has only influenced these decisions and has not owned them. So again, take a step back from your life for a few minutes and reflect back upon the person you are today and be proud of the fact that you a person who stutters. That is not to say that your stuttering has to be the pure focus of your pride in your life and in fact it should not be.

Your pride may come from the fact that you achieved something important to you and you just happen to be a person who stutters. For example you have become a surgeon and you take pride in the fact that you achieved high results in university and became your dream when in fact many of your classmates dropped out of medicine without graduating. But you achieved all this and now prosper despite your stuttering and you should be proud of this. As discussed, pride is born from a deep satisfaction within. So even if you stutter when ordering your favourite pizza topping you should still take pride in the fact that you did order the topping and you got the flavour that you wanted, instead of ordering the flavour that was easiest to say. You can then still continue to work on your speech and be proud of the fact that you are constantly trying to self-improve. But your speech should not be your single aim of self-improvement. Yet we know that pride at times can be strongly tied to stuttering acceptance. Some people who stutter become comfortable with their speech during their lives and simply do not want to work on their fluency. They become proud and accepting of who they are and have become. Yet as a community we seemed divided over this idea that a person who stutters may choose not to want normal levels of fluency or controlled speech. So amongst ourselves we fight and debate over this personal choice that no one is generally trying to persuade others to follow. Yet so many people who stutter seem offended and at times disgusted that another person who stutters may be so comfortable in themselves that they choose not to clinically manage their speech, when in fact they are managing their communication and life in their own unique ways. It seems ludicrous that amongst our community stuttering is often portrayed as being almost an illegal act and a blight to be eliminated. If you choose to live with your stutter and speak out positively about doing so then you can be sent to the fringes of the wider stuttering community and at times not that accepted within what you would expect to be a very accepting network of support networks.

This lack of unity within stuttering communities leads to problems of recognition globally for society to take stuttering seriously. Since the hype of the King’s Speech has died down stuttering has had little limelight or focus in terms of media. In fact even when this film was being promoted it seemed to be up to the media itself to generally seek stories and promote stuttering, as opposed to stuttering organisations and individuals loudly using this unique opportunity to promote themselves and the cause at hand. Often resulting stories revolved around framing stuttering as a blanket negative and a condition that cripples all that it afflicts. This is a stance that I understand well and it does help to find funding dollars and raise awareness a little. But as discussed earlier stuttering is a disability and does disable at times all that have the condition whether they like to admit it or not. If stuttering has in any form stopped you from making a life choice or even a daily choice from simply ordering the coffee you want through to choosing not to apply for a promotion means that the involuntary disruptions to your speech pattern and associated feelings are disabling you from time to time.

But the point of this paper is not to argue again that stuttering is a disability, because clearly when applying most legally definitions worldwide it is defined as such. Part of the solution to help elicit stuttering pride is to promote people who stutter and who are successful in many ways to the media. This will install more pride within the stuttering communities themselves and help encourage more associated unity. Promoting “successful” people who stutter will also help to alleviate the general negative views of stuttering amongst the wider general public. Such “success” stories should show people, including other people who stutter, how so called adversity can be overcome despite having a disability. It will also help stuttering organisations to find funding dollars and more media support. It becomes easier to attract funding for stuttering programs when you can show the success stories of those who the community, government and other funding bodies have supported throughout their lives have benefited. These success stories would show the greater world how funding dollars and support has enriched the lives of the people profiled, improved overall quality of lives and value added to the benefit of society. These success stories do not have to be people always stuttering out of control, but they need to show all ranges of stuttering. From those who use speech management techniques through to those who do not. These stories have to show the realities across our communities and our communities need to support this wide range of views and project pride in doing so. This will assist with debunking general social stuttering myths around our general personalities, aspirations and the impact of stuttering upon our lives (often understated). If we cannot accept in ourselves that one can take pride in the fact that one stutters then the general public will continue to frame stuttering as a negative. We need to show pride to the wider community so that those feelings are reflected back to us in a positive fashion. It is counter-productive to always portray stuttering to the world in a fashion that portrays it so negatively in terms of always having to be managed or eradicated. These unrepresentative feelings of the stuttering community as whole will then be negatively reflected back to us in media and society. Yet as a greater community of people who stutter we would then complain about these portrayals of people who stutter in all forms of media. So even if you choose to undergo treatment for your speech you can still take pride in the fact that you are a person who stutters who is achieving goals to manage it more. But underneath the therapy is the fact that you are still a person who stutters. So why not be open about this and embrace this fact, in terms of “acceptance”.

Again let me reiterate, being proud of being a person who stutters does not mean that you cannot work on managing your speech in which any form you choose. In a form that is assisting you to reach your life aims and goals. In turn our stuttering communities need to embrace all the differing views of its members. We need to respect each other’s pride, then respect is shared and a pathway to unity begins. You may not agree with another person’s aims and pride, but you can try to accept them and embrace them. But unity is so difficult to achieve within these splintered communities of people bonded by one characteristic and that is stuttering.  So I will leave you with the Stutterer’s/Stammerer’s Creed that I published last year and is used in parts within some circles.

 

The Stutterer’s/Stammerer’s Creed

This is my stutter. There are many stutters like it, but this stutter is mine.

My stutter does not define me, but it is a part of who I am.

I must master my stutter, as I must master my life.

I will not let it control me or my destiny. Nor will I use it as an excuse not to succeed.

I will feel no shame by stuttering, nor anger at myself doing so.

Other people who stutter may have different opinions about stuttering.

I may not believe in these views, but I will appreciate their opinions.

I will not stand in the way of their personal journeys. But I will not promote those which I disagree with, find fraudulent or untrue.

Without me my stutter is useless. I am its master and together we shall thrive.