One World Many Voices – Working towards A World that Understands Stuttering (Jenny Packer, Kirsten Howells, Hanan Hurwitz)

About the authors

Jenny Packer is a Speech and Language Therapist working for the National Health Service in the United Kingdom. She works with adults and children who stutter and in addition to her clinical work, is currently co-chair of the International Fluency Association’s Meetings and Conferences committee.
Kirsten Howells stutters and is a UK-educated Speech and Language Therapist. She has spent a number of years living and working in Norway, and currently lives in California. She is co-chair of the International Fluency Association’s Meetings and Conferences Committee, and is a member the San Jose chapter of the NSA.
Hanan Hurwitz is an Electronics Engineer working as Director of Quality at a global company that designs and manufactures electronic servo controls. Hanan is also a Person Who Stutters, and has stuttered since childhood. He serves on the Advisory Board of the International Stuttering Association.

Introduction

One World, Many Voices: Science and Community is the theme of the Inaugural Joint World Congress of the International Cluttering Association (ICA), International Fluency Association (IFA) and International Stuttering Association (ISA), with local host organisations the Japan Society of Stuttering and Other Fluency Disorders and the Japanese Stuttering Genyukai Organization. This event will be held in Hiroshima, Japan, in July 2018, and planning is well under way.

This exciting new collaboration between the three international organisations, and their Japanese hosts, aims to create an event that will allow everyone – people who stutter and clutter, clinicians, and researchers – to feel welcome, included and valued. We value the vision of “A World that Understands Stuttering”, and the World Congress is designed to further that goal.

Embracing all Perspectives

Some within the stuttering community perceive historical divisions between people who stutter and professionals researching or working clinically within the stuttering world. For some, these groups may appear to occupy different ‘camps’ and hold different views about and attitudes towards stuttering.

We are aiming to break down some of the barriers that can exist among these groups, encouraging mutual respect and recognition of the different pieces of the puzzle that different backgrounds and experiences can offer. Critically, it is our belief that worthwhile advances in quality of life and advocacy for those living with fluency disorders can only occur in the context of open dialogue and mutual respectful exchange among people who stutter or clutter, therapists seeking to help, and researchers seeking to understand the nature and best treatment of fluency disorders.

Discussing the Social Model of Disability

Much has been written and said over the past few years about the Social Model of Disability and its relevance to stuttering. The Social Model says that “disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives” (scope.org.uk).

This is in contrast with the Medical Model of disability which “looks at what is ‘wrong’ with the person, not what the person needs. It creates low expectations and leads to people losing independence, choice and control in their own lives” (scope.org.uk).

Our World Congress embraces the Social Model of Disability and the empowerment of people who stutter, while at the same time recognizing that:

  • Our world is far from perfect and we are a long way from understanding stuttering and other disabilities.
  • People in our communities need our help, not to be fixed but to be shown ways of surviving and thriving with our disability.

We therefore do not see any contradiction between the Social Model on the one hand and research and clinical practice on the other hand. Much research and clinical practice is invested into enabling people who stutter to live the lives that we choose irrespective of whether and how much we stutter.

It’s not About Fluency

It is important to stress that the International Fluency Association (IFA) does not promote ‘fluency’ as a goal, but rather the IFA is “devoted to the understanding and management of fluency disorders, and to the improvement in the quality of life for persons with fluency disorders.” It is based on this clarification and understanding that a joint conference was proposed and accepted. The International Cluttering Association (ICA) will also join this collaboration, creating opportunities to discover similarities and differences in experiences for those who stutter and those who clutter – or both. This event will allow for a true celebration of stuttering and cluttering, building on the themes, first, of the 2016 International Stuttering Awareness Day Online Conference – respect, dignity, recognition, and pride, and now of the 2017 ISAD online conference – A World that Understands Stuttering.

Concluding

The Inaugural Joint World Congress of the International Cluttering Association, International Fluency Association and International Stuttering Association will be a ground-breaking initiative where historically diverse groups are cooperating effectively to explore experiences of, feelings about, and attitudes towards stuttering. We want people who stutter or clutter to feel safe and surrounded by friends. We want those who work clinically to have opportunities to share and update their skills. We want to give researchers an opportunity to present high-quality research in a stimulating environment, while simultaneously giving those who explore innovative and new approaches to living with stuttering a chance to share their experiences and ideas.

The benefit of this cooperation will be entirely mutual and shared by the PWS, the clinicians, and the researchers.

Together we are working towards achieving the vision of A World that Understands Stuttering.

For more information, follow us via social media #owmv2018, and on the websites of the individual organizations.

Join us in Hiroshima, 13th to 16th of July, 2018!

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Comments

One World Many Voices – Working towards A World that Understands Stuttering (Jenny Packer, Kirsten Howells, Hanan Hurwitz) — 24 Comments

  2. Hi Jenny, Kirsten and Hanan,

    Well done on stepping up to the exciting but daunting challenge that this Congress will present. Past experience has shown that, more than education, delegates (pws, clinicians and researchers) tend to value validation. That is people are more attracted to a Congress stream which will support their current view rather than challenge it. Since this Congress intends to work towards a synthesis of ideas, how do you intend to manage this issue?

    Kind regards, Mark Irwin

    • Hi Mark,

      You pose a good question. I’d like to emphasise that I have not had the opportunity to discuss your question with other members of the Congress Organising Team, so my response here reflects my personal opinion alone. Working across cultures, languages, organisations and personal viewpoints, the Joint World Congress does, indeed, present some challenges. We are fortunate in that the Congress Organising Team, with representatives from all of the organisations involved, is working well and finding ways to share perspectives both as individuals and as representatives of our various organisations. Our priority is ensuring the quality of the event’s content, as it is important that the congress can meet the differing needs of pws/pwc, therapists, researchers and the various organisations involved in the collaboration. I’m not sure I agree that the Congress necessarily intends to work towards a synthesis of ideas, but my personal hopes for the event are that we can provide opportunities for both validation and for challenge. I feel that thoughtful scheduling is the best tool we have to help us achieve this. For example, when the submissions review process is complete, we will consider which presentations are to be included in plenary sessions, when delegates with different backgrounds are all together in one room, and which presentations/workshops are to run simultaneously during parallel sessions. Rather like a bookclub, where members may find that the books selected often fall within the genres they commonly read and already like, but occasionally find themselves reading something completely outside their usual preferences, I think there will be many occasions when delegates are able to attend sessions that fall within their pre-existing spheres of interest but, on some ocasions, thoughtful scheduling will encourage delegates to consider attending a session that offers something new, an alternative perspective, or the opportunity to develop or extend a network. Keynote speakers have also been asked to consider ways in which their contributions can stimulate thought and discussion across the various groups involved.

      I hope this gives you some insight into the congress planning.

      Kind regards,
      Kirsten Howells

  3. You made me smile with your inclusion of the social model of disability. You may or may not know early days of NSP/NSA late 70’s attended peer support groups at Center for Independent Living (CIL)in Berkeley for people with disabilities and organized peer support groups for folks who stuttered here in USA.
    At those early groups at CIL people first language was developed. And by ’78 NSP was using PWS language.
    I have always seen PWS and PW disabilities movements are rooted in human rights…And the underlining message from NSP/NSA was for us (PWS) to have a voice in therapeutic process and create a community and a society that reduces stigma; discrimination and change disrespectful language that can make us (PWS) feel excluded and a barrier to full participation.
    I was very lucky to have had a good relationship with Gene Cooper who understood boundaries and peer and professional relationships.
    Kirsten once a year I host a holiday or late summer get together–I live in Oakland and San Jose Group is always invited. Hope to talk in November —always Michael–and thank you again for social model of disability–You can imagine back in late 70’s how the stuttering community reacted to me 🙂

    • Dear Michael,

      Thank you so much for your response and comments. It was quite an eye-opener for me to read about the early days of of the NSP/NSA! And I agree that language can be very influential in shaping perspectives and attitudes.

      Wow! You’re in Oakland. Not far away at all, as I’m in Sunnyvale. Would love to talk with you in November. Something for me to look forward to!

  4. Hi Jenny, Kirsten and Hanan,

    What a thought provoking paper. I loved your statement that “quality of life and advocacy for those living with fluency disorders can only occur in the context of open dialogue and mutual respectful exchange among people who stutter or clutter,”…therapists and researchers. In a community with very strong opinions–this is the true challenge. Even within the community of people who stutter there are vast differences in opinions/ideas. Enlarge that circle to other fluency disorders and the people who treat/research them and the breadth of differences increase. You are correct when you say that we are far from perfect in this resolution; however, it is papers like this that brings us closer to understanding and accepting each other.
    thanks for your contribution,
    Rita

    • Dear Rita,

      Many thanks for your response. I think your comments hit the nail on the head. The process of organising this congress has certainly made me more aware than ever of the range of opinions out there, and the strength with which they are held.

      The aim of the joint world congress is therefore not to become embroiled in the futility of attempts to identify a “one true view on stuttering” but is, as you so rightly say, to bring us closer to understanding and accepting one another. It’s a big, wide world out there, and there is definitely more than one way to live a life with stuttering!

  5. Hello,

    What a great idea! I love the quote “quality of life and advocacy for those living with fluency disorders can only occur in the context of open dialogue and mutual respectful exchange among people who stutter or clutter, therapists seeking to help, and researchers seeking to understand the nature and best treatment of fluency disorders.”. This is so important to remember and easily forgotten!
    I was wondering what area of fluency research will be presented at the congress? With a better understanding of fluency and a word cohesive view, as the primary focus of this congress, will there be any research presented about “stuttering universals”, or characteristics of stuttering that cross all languages, cultures, etc.? (think language universals but with stuttering!).

    thank you!

    Madison Melo

    • Dear Madison,

      Thank you so much for your enthusiasm, your comments and your questions. They are truly appreciated!

      With so many organisations collaborating in this event, we have not specified particular areas of fluency research to be presented at the congress. Instead we are hoping that diverse perspectives and ideas will be heard, helping us to a better understanding of the myriad voices out there. The Call for Papers is currently open and will remain so until mid-December, so it will be interesting to see if we receive any presentation proposals on the topic of “stuttering universals”. Are you thinking of joining us in Hiroshima?

      Kirsten

  6. Thank you, everyone, for your comments and thoughts about our paper. The Congress Organising Team are really hopeful that the World Congress will provide an opportunity for discussion, debate and challenge between delegates from across the wide stuttering and cluttering community. We are very happy with the enthusiasm expressed for what we’re trying to achieve in the various comments posted and promise to continue working hard to build what we hope will be a truly memorable (for all the right reasons!) and inspiring World Congress next summer. As Kirsten said in her reply to Madison above, the Call for Papers is currently open and we hope that people will seriously consider submitting a presentation and joining us in Hiroshima next summer!
    Jenny

  7. Thank you for this post! I’m a second-year SLP graduate student, and this is the first time I’ve heard of the Social vs. Medical model of disability, although a holistic, person-first perspective has been mentioned in my classes thus far. The purpose of this upcoming Congress is very ambitious and exciting! As previous commenters have mentioned, I hope it won’t become embroiled in a debate about one “true view of stuttering,” but I’m sure all professionals involved will be able to focus on advocacy, acceptance, and understanding. I would love to learn more about outreach efforts to increase advocacy and understanding in the wider community, as well.

    • Hi Kimberley, Thank you for your comment. I think you’d find it really interesting to look into more information on the Social vs. Medical model of disability, and really helpful for your future practice as an SLP!
      From the discussions that have been going on for over a year now behind the scenes, I feel I can say that within the Congress Organising Team we really want the World Congress to be about people respecting each other’s views on stuttering and cluttering, and we hope that the Congress theme, ‘One World, Many Voices’ will help prevent the kind of debate about ‘one true view of stuttering’ that you mention. The Organising Team includes people from many different backgrounds, with different experiences and views on stuttering and cluttering. From my perspective I think that we have established a very respectful atmosphere within meetings and discussions where everyone is listened to and at times, consideration of another’s view or experience has led to a wider personal understanding of the world of stuttering. I really hope the atmosphere we have developed within the Organising Team will be carried forward and shared by all delegates at the Congress.

  8. Hi Jenny, Kirsten and Hanan,

    I am a graduate student at the University of Minnesota, Duluth and I am currently taking an advanced fluency course. I enjoyed your article and am thrilled to learn of the collaborations that are going on. I love that the IFA is devoted to the understanding and management of fluency disorders and the improvement in quality of life for persons with fluency disorders rather than focusing on fluency itself. It’s exciting to learn about the collaboration and the opportunities that this event will provide. The opportunity to discover similarities and differences in experiences of those who stutter or clutter was mentioned. With three international organizations working together, have there already been any differences or similarities noted in experiences with PWS?

    Thank you for your time, and congratulations on your accomplishments.

    Rebecca

    • Thank you Rebecca, for your kind words! We’re glad you enjoyed the article and hope that you’ll follow the Congress plans on our website, http://www.jointworldcongress.org to find out more! Could you clarify your question please as I’m not quite sure what you mean – did you want to hear about any differences and similarities between people who stutter and clutter on the Organising Team or have I misunderstood? Sorry! Jenny

      • Hi Jenny!

        Yes I am curious to know of any differences or similarities that you have noticed between people who stutter and clutter on your team and of anyone you have encountered through this organization. Thank you for your response.

    • Hi Rebecca,

      So far we have been working on the organization of the event only, and therefore nothing can be reported thus far on the differences and similarities that you mention. The mutual cooperation and understanding among our groups working on the planning of the event has been nothing short of superb. It is our hope and expectation that there will be a variety of presenters, and though the presentations and workshop the dialog will occur.

      I hope I have answered your question.

      Hanan

      • Hanan,

        Thank you for your response. I look forward to learning more once the event takes place.

  9. FYI- Maybe this will help or not. In 1997 IFA called the last day of the conference “Consumer day.” Was able to organize PWS who were not SLP’s to present ranging on topics on Stress management to Parent groups to Relapse. I was on the team to organize San Francisco IFA conference. Maybe rather than the last day –you can develop threads: Hearing from PWS; Professionals; etc.

    always Michael

    • Thank you, Michael. I will take your ideas to the planning team. Maybe we will see you there?

      Take care
      Hanan

  10. As a graduate student, I have been learning so much about the importance of managing and accepting one’s stutter as opposed to “fixing” one’s stutter. I think the initiatives described above will accomplish that goal! I have learned of the importance of building that bridge between PWS and their community in order to create that open dialog and increase awareness and acceptance. I loved the notion of the Social Model and that people who may have a disability can be independent and included when those barriers in society are torn down. This is such an important concept, and is something I think can open more doors and bridge gaps between individuals not only with communication disorders, but any other type of disorder or disability as well, and their communities. Thank you for the insights and article!

  11. Hello,

    I think it is great that an international congress that believes in advancing the quality of life for those with fluency disorders is taking place! It is great to see that the message of not looking at what is wrong with a person but rather looking at what the person needs is being spread. This is definitely important in our world because fluency disorders can bee seen in so many different languages and cultures and teaching people these concepts will have a positive impact on this population. Removing barriers and becoming accepting of these disorders (and all kinds of other disorders) is something our ever-changing world should strive for. Are you going to be planning more events like these in the future?

    Thank you for this great article!

  12. Hello,

    What a fascinating paper you wrote! I really enjoyed that you talked about the social aspect of quality of life. I appreciated that you mentioned, “quality of life and advocacy for those living with fluency disorders can only occur in the context of open dialogue and mutual respectful exchange among people who stutter or clutter”. So many different professionals, persons who stutter and the rest of the population hold such varying views and opinions that its important to really take the time to sit down and discuss the importance of everyone’s opinions and create new understandings among us. What kind of thought provoking exercises do you use at your events? I would like to hear more about them.

  13. I love how this paper describes the openness and willingness to share and learn from each other at this amazing event. We’re all a piece of the puzzle and I hope the joint world congress will open doors and tear down walls.

    Keep talking and joining hands!

    Anita