Friends in India: Support for People who Stammer (PWS)

About the Authors


kleinJoe Klein, Ph.D., CCC-SLP, is an Assistant Professor in Communication Sciences and Disorders at Appalachian State University in Boone, North Carolina. Joe teaches classes in fluency disorders and research methods and supervises therapy for people who stutter. Joe has presented at the American Speech-Language-Hearing Association and The National Stuttering Association annual conventions in the United States and for Friends: The Association of Young People who Stutter in India and the US. He has also published articles about stuttering in Contemporary Issues in Communication Sciences and DisordersPerspectives in Fluency Disorders, and The Journal of Fluency Disorders. Joe’s research interests are in the areas of support and therapy for people who stutter. Joe lives in Boone, NC with his wife, Holly, and children, Zachary, Greta, Emaline, and Abraham.

guptaDhruv Gupta is a Corporate Finance graduate with a minor in Informatics from the University of Illinois at Urbana-Champaign. His organizational experience spans hospitalitydigital-marketing, software (mobile/web) design & development, and social-sector startups, giving him a broad understanding of several verticals. He is a social entrepreneur and has co-founded businesses in China and Speak: Stammering Foundation in India. He is a Toastmaster and core group member of TISA. He is passionate about real sustainability becoming main-stream culture to mitigate climate change. He is currently working with cBalance, a sustainability consultancy based in Pune and Mumbai.

embabiNoura Embabi, M.A., CCC-SLP is a speech-language pathologist and an avid supporter of the self-help community for people who stutter. Noura has attended NSA and FRIENDS conferences on multiple occasions, and traveled to India for the first time to help facilitate the two-day FRIENDS in Mumbai convention. She currently works at the Center for Speech and Language Pathology in Greenwich, CT. With a special interest in using cognitive approaches with people who stutter, Noura applies principles of cognitive-behavioral therapy and solution-focused brief therapy while working with children and adults who stutter. Noura received her undergraduate and graduate degrees from Queens College in the City University of New York, where she also studied counseling and anthropology.
caggianoLee Caggiano, M.A., CCC-SLP, is co-founder and Director of Friends: The Association of Young People who Stutter. Lee is a Board Recognized Specialist and mentor in Fluency Disorders and teaches graduate courses at NYU, Queens College, and CW Post. Lee is the parent of an adult son who stutters and is the director of the Long Island Stuttering Therapy and Resource Center.

Note to readers: stammering and stuttering are used in different places throughout this paper but both words have the same meaning.  The intent is not to confuse, but the term ‘stammering’ is more widely used than ‘stuttering’ in Indian culture.


The mission of Friends: The Association of Young People who Stutter (www.friendswhostutter.org) is to provide support and education to children who stutter (CWS), their families, and Speech-Language Pathologists (SLPs). Friends was founded in 1997 by John Albach and Lee Caggiano and now offers one-day workshops around the United States as well as an annual convention that is held in July for three days. Friends is the only support organization exclusively for young people who stutter and their families. The conventions consist of group support for children and parents, and siblings, as well as continuing education opportunities for practicing SLPs). Adults who stutter (AWS) are also welcomed into the community as volunteers.

In May, 2015, Friends collaborated with The Indian Stammering Association (TISA) (www.stammer.in) and Speak: Stammering Foundation (www.speak.org.in) to host the first-ever Friends Convention in India, on May 23 and 24, 2015 in Mumbai. The convention included CWS and their parents, AWS, and SLPs. For pictures of the event, view the convention photo album. The event was created and organized by Dhruv Gupta, a member of TISA and the founder of Speak.

Dhruv traveled to the United States during the summer of 2014 and attended many stuttering events, including annual conventions of the National Stuttering Association (www.westutter.org) and Friends, and volunteering for Camp Say (www.campsay.org). After attending these events, Dhruv wanted PWS, and especially CWS, to have access to the kind of support and information that these organizations provide in the United States. Dhruv contacted Lee Caggiano, Executive Director of Friends, to make this event happen.

Noura Embabi and Joe Klein flew to Mumbai from the US for the conference. The conference was attended by three CWS, one sibling, seven parents, 26 AWS, and 18 SLPs. Though many workshops were held separately for each group, there were several opportunities for all attendees to participate as one. TISA members Vishal Gupta and Gaurav Dubey translated into Hindi whenever necessary, though most attendees spoke and understood English without apparent difficulty.

Family workshops for CWS, siblings, and parents included voluntary stammering, drawing their stammer, creating personality wheels illustrating their colorful identities, and preparing short skits. Voluntary stammering in particular was a new experience for many. For the children attending, not only had it been their first time meeting another PWS, but it had also been their first time witnessing a sibling or parent voluntarily stammer. In performing their skits, parents took the role of their children, while the children modeled for their parents how to respond to stammering with acceptance.

Perhaps what was ultimately most unique about this convention was that it provided a shared space for CWS, AWS, parents, and SLPs. At first, parents approached SLPs with a tremendous amount of questions about their children; why they stammer, how to help, and whether they made the right decisions for their children so far. However, over the course of the convention, parents eventually looked to adults who stammer for guidance and wisdom on stammering. Children, too, had the opportunity to ask adults any questions, such as whether one could be an engineer and stutter. Adults reflected on their stammering as children and relayed to parents the ways they wish their parents had responded to their stammering, retrospectively. The convention ended with a bravery workshop, where attendees recognized each other for their acts of courage. In final moments of reflection, a nine-year-old boy held a microphone and said, “I thought I was the only one”. His mother had also shared the following:

My son just told me that this is more for me than him, and I realized that this is true – it is not that he has to change, we as parents have to change. We have to accept him the way he is. I am so happy to meet so many adults who stammer and are successfully living their lives. Thank you for organizing this.

Two adults who stammer wrote these blog posts after participating in the convention:

Also, here are two StutterTalk podcasts recorded during and about the convention:

For many of the attendees present, a change in thinking was underway in how stuttering and therapy were defined. Some of the ideas, which were initially met with disbelief, but appeared to have an impact, were:

  • “Transfluency” or the notion that stuttering is natural variation rather than a pathology or disorder (Read more here).
  • Attitudes and emotions as a priority in stammering therapy, more so than speech fluency
  • Voluntary stammering as a step towards acceptance rather than a barrier to progress
  • Recognizing the PWS as an agent and expert, and the therapist as a coach and facilitator

Along with the two-day conference, Joe and Dhruv were able to hold two two-day workshops with AWS and SLPs that were centered around therapy procedures for adolescents and AWS. This provided an opportunity to have a conversation about integrating acceptance into stammering therapy. All participants were able to give their ideas and suggestions about what had worked or not worked in the past. It also allowed Joe to share and model some of his therapy techniques for the PWS and clinicians. One SLP, who was able to attend the Friends conference and one of the two-day workshops wrote:

I write to you, to make you aware of the deep impact your presentations and interactive sessions have made in my outlook towards fluency therapy since the past few weeks. I was elated to share techniques and talk openly about how everyone is “licensed” to stammer with my clients, putting them at immediate ease. I try and analyze a situation and think how would you approach it and visualize the ease and enthusiasm that would consume you during your interactions with PWS. It has been one of the most enriching experiences, leaving behind an indelible change of thoughts and perspectives. If we meet again we shall smile, else this meeting was well met. Thank you!

Over the next year, TISA and Speak plan to hold four Friends conventions around India – Bangalore, Delhi, a city to be decided soon, followed by another one in Mumbai. The full one-year intervention led by Speak is outlined here: milaap.org/campaigns/stammer.

Planning a conference for the first time was not easy. Dhruv shares seven key steps for anyone who wants to organize a convention for PWS anywhere in the world:

  1. Set a date. We chose to hold our convention over a weekend. It could be a one-day event or a few days. If your focus group is children, pick a weekend while schools are on holiday, but close to when schools will start again. This is recommended so that families are back from their travels and kids and parents are more relaxed before schools start.
  2. Find a venue. We found Somaiya Vidyavihar, a private university here, that gave us all the space for free, after one person in the organization believed in the cause. Reach out to a higher-up through a personal contact and share your vision. They will see your passion and believe in you.
  3. Positioning well. Aligning your convention with the philosophy of a local stuttering/stammering community, can help you attract more people – not to mention be more useful to everyone! Get in touch with your local stuttering/stammering community organization. Learn their philosophy, what they believe, and if you feel inspired enough by it, ask them if you can organize their next convention. Let them know what you want to do, why you’re doing it, and if you believe it enough and understand their ethos, they will support you. We attended a Friends convention in the US and felt so inspired by their mission that we decided to bring a similar experience to India. We positioned this convention as the first Friends convention in India being organized by TISA – this positioning helped attract people.
  4. Choose/Find Facilitators. Choose your facilitators and book them early. Ideally, it’s best if you can find facilitators within your country, hence connecting with the local stuttering/stammering community.  It is important to have SLPs who truly understand stammering and the importance that acceptance and peer support have. Effort was made to find SLPs who had knowledge that stammering is not only repetitions, prolongations, and blocks, but that attitudes and feelings play a large (and perhaps larger) role in stuttering treatment.
  5. Funds. If you get a free conference space, free rooms for facilitators in the hostel or the university, you can just charge a nominal registration fee to participants to cover food/drink, printing and other incidentals. The registration fee at Friends in Mumbai was Rupees 250 (USD $3.70) – which included four meals, name badges and lanyards, schedules and registration folders for each participant!
  6. Focus on contacting all schools and SLPs in your target city – call, visit and put up flyers. Usually SLPs in the city have an internal WhatsApp group. Find one nice committed/dedicated SLP, usually the ones who work for government hospitals, and they will help you spread the message. Government SLPs will happily tell their clients, and private SLPs will do so after they know that you are not in competition.
  7. Keep the why you are doing it strongly in your heart. Write it on your wall. Persistence through belief in the cause is the key. Our “why” was to reach at least one child, to let them know they are not alone – if I achieved this, I was happy.

This convention was an example of people coming together from around the world to support PWS. We challenge everyone reading this to make a difference in the lives of PWS. Spread the word that stuttering is okay!

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Comments

Friends in India: Support for People who Stammer (PWS) — 12 Comments

  1. Great to have read about this cooperative venture in changing not only societal perception of stuttering…as well how PWS view him/herself.

    Always, michael

    • Michael, thanks for getting us all started Jon this journey, there is no end to how many folks we can reach

  2. Over the years, we’ve had individuals from different countries attend our support group and many have spoken of attitudes in their cultures toward people who stutter that are very different than what American stuttering individuals encounter (how’s that for a run-on sentence?). I’m curious whether any attitudes in India presented benefits or barriers to increasing support services for people who stutter.

    • Dale,
      That’s a great question. I was struck by a few things in India. First, adults who stutter told stories of going on job interviews and stuttering on their name and immediately being asked to leave. That would count both as a cultural and legal difference, I think. Also, many people mentioned the idea that in the Hindu religion, some believe that if you have a disability of any kind, it is because you did something bad/wrong in a previous life. I can’t imagine the amount of shame that must bring to people as well as hindering any kind of disability rights movement… this sounds like a good research project…

  3. Hello. I am a graduate student in a fluency class currently. I am wondering if you know what kind of therapy is used for PWS in India? It seemed like the idea of addressing feelings and attitudes was new to some of the convention goers. I was curious to know how therapy is different, given the cultural difference.

    • That’s a good question. Therapy was similar to that of therapy by general practitioners in the US, I think. The typical therapy in India appears to be fluency based, with some work on attitudes and feelings sprinkled in. There are no speech therapists in the schools in India, so SLPs work in hospitals, and it is much more of a medical approach rather than a more holistic approach. I hope that answers your question!

  4. Wow! I was curious to see how the conference actually was and who and how many attended. Thanks for breaking everything down and including the tips for organizing your own convention anywhere.
    Joe and Noura – what a great opportunity to visit India and to personally experience the cultural differences and similarities. Was it much of a culture shock for you? Did the Indians receive the Americans well? What would you say is the most striking difference between therapeutic approaches in India and the U.S.?
    Even though there are no school based SLPs, do children who stammer actually get to see a SLP?
    Thanks again for such a comprehensive paper! -Pam

    • Pam,
      There were lots of similarities and some differences. Everyone was overwhelmingly friendly. The therapy approaches are very similar. A lot of fluency shaping with some feelings and attitudes sprinkled in, which is what I think the average SLP in the US does, as well. I would guess that most people who stutter in India never have the opportunity to see an SLP. In a city of 24 million people, I doubt there were more than 75 SLPs.

    • Hi Pamela,

      I would second everything Joe has said, and add a few things:

      – Because there were few SLPs (or limited access to SLPs), at times PWS sought help from “non-SLPs” (e.g., public speaking coaches, life coaches, people who lead meditations, and TISA!). Actually, Dhruv has told me that TISA runs activities that may very well be considered “therapy” in the US, and the Mumbai TISA self-help group meets every week for a few hours, doing things like voluntary stuttering and self-advertising outside. At the same time, I don’t think this opportunity is there for children. A parent told me that she took her child to a person teaching tongue and jaw exercises, and it was not clear to me what his profession was.

      – The Indian/American lines were quite blurred among SLPs, as some of them had studied in the US and one was an American working at an international school in Mumbai. I think this may contribute to why their approaches were not very different from our own. Also, there was almost no language barrier since nearly all attendees present spoke English very well.

      However, I do feel that in the US, SLPs and support organizations like Friends and NSA are more connected than Indian SLPs are with TISA. I found that TISA was more focused on desensitization and risk-taking, while the SLPs were focused more on fluency-shaping strategies. So connecting the two is part of what made this convention very special!

  5. Hi Joe,

    I was heartened to read about the wonderful efforts of FRIENDS to enhance the lives of young people who stutter in different parts of the world. I was unaware that the organization has such extensive boundaries.

    Judging by the photograph, you haven’t changed a bit since we met at Temple University, Philadelphia in 2006. A great deal of water has since passed under the bridge. I sincerely hope that our paths will cross again on some future occasion. Who knows? – one day, I may make another transatlantic trip and attend a FRIENDS Convention in the US. Travelling to India would be a little beyond my compass. 🙂

    Thank you (all) for sharing.

    Kindest regards

    Alan Badmington

    • Alan,
      Thank you for the kind words. Yes, it has been a while! Hopefully either a Friends conference or NSA conference in the future will bring us together once again.
      Joe

  6. Hello-

    I commend you all on your hard work in bringing the Friends experience to India. Stammer on!

    Jeff