International Stuttering Awareness Day: How it began (Michael Sugarman)

About the Author: Michael Sugarman, MSW. Attended peer support groups for people with disabilities at the Center for Independent Living, Berkeley California, in the late 1970’s and saw the stuttering community movement and disability rights movement together to argue for human rights (Americans with Disabilities Act) and remove  stigma of being “stupid, nervous”, or  seen as “less than whole.”

In the second grade I was transferred from a regular class to a special education class. Fortunately, a student teacher from University of California Los Angeles (UCLA) asked me to read a book to myself and then write down what I read and answer five questions. After giving the correct answers I was sent back into regular class. I was in my third reading group and had never graded higher than a “D” in reading. After going back to regular class, I changed my mindset into “I stutter and am a Proud activist”.

I was fortunate to work in the AIDS community when December 1st was designated World AIDS Day in 1998. I worked for the Disability Rights Education and Defense Fund in the early 1980’s. I continued to support the Disability Rights Movement and was with them when December 3rd was designated as World Disability Day in 1992.

At the World Congress of People who Stutter in San Francisco 1992, people spoke about setting up an international organization for people who stutter, and some of us talked about a stuttering awareness day.  By 1997 John Ahlbach was considered to be Consumer Chair for International Fluency Association (IFA). However, due to internal conflicts within NSA, Gene Cooper, Chair of IFA asked if I could step in. I proposed the last day of the IFA San Francisco Conference August 1997 be consumer day. Consumer day focused on a range of topics, from parents of children who stutter, to stress management.

I was on the closing ceremony panel. Earlier in the day I met with Thomas Krall, Chair of the International Stuttering Association (ISA), on the San Francisco embarcadero. At the closing ceremony we proposed the International Stuttering Awareness Day (ISAD), to recognize the relationship between professionals and consumers. Fortunately I had a very good relationship with Dr. Gene Cooper who was Chair of IFA and the American Speech-Language-Hearing Association (ASHA) specialty division. We negotiated a better day for speech language professionals and returning students in stuttering classes to participate in these activities. October 22nd was recognized by stuttering organizations as International Stuttering Awareness Day.

I attended workshops at different AIDS conferences and participants would email questions to speakers who answered the audience, while someone emailed his response to others. I asked our good friends Joan and Wes, who founded Moveon, if it’s possible to provide an interactive web-based forum between author and reader. Wes said Yes.

Fortunately for all us, we met Judy Kuster giving a workshop on the internet. We spoke to her and the International Stuttering Awareness Day Online Conference was created in 1998. A huge thanks to Judy, and to the present cast and all of us who have shared our inner thoughts on stuttering with others.

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Comments

International Stuttering Awareness Day: How it began (Michael Sugarman) — 11 Comments

  1. This is very interesting information. Thank you for sharing the roots of International Stuttering Awareness Day Online Conference.

  2. Michaelת Not sure you know (or remember) we declared the establishment of AMBI – Israel Stuttering Association on Oct 22, 1998. It was not by chance.

    Thank you for your efforts for people who stutter

  3. Hello Michael Sugarman,

    My name is Meredith Towey. I am a graduate student studying speech-language pathology. I really enjoyed your piece on the beginning of International Stuttering Awareness Aay. I was also interested in your anecdote about being pulled out of regular education classes as a kid. Unfortunately, these misidentifications are still happening today. I want to make sure children who stutter feel empowered even if others can’t understand their diagnosis! Do you have any advice for counseling kids who have once been perceived as having an intellectual disability?

    Best,
    Meredith Towey

    • I was pretty lucky. I had someone who thought outside the box in reading. Your willingness to listen and “trust” your skills–would enhance CWS trust in you will empower him or her.
      Good luck in becoming a alp. And thank you for your kind comments-

  4. Hello Michael,
    I enjoyed reading about your involvement in developing the International Stuttering Awareness Day and all of the positions you have served in as an advocate for various groups of people. This is my first year participating in this online conference as I am a first year graduate student pursuing a career in speech-language pathology and until now I wasn’t aware of this opportunity to learn and communicate with others who are passionate about stuttering. I can see how this conference provides a great platform for accomplishing the objectives of the ISAD by connecting people who stutter to professionals and other individuals in the community who care about issues relevant to stuttering. I was wondering though if you have seen any other great ways that individuals or groups have observed ISAD over the past 20 years outside of this conference? If so what was your favorite, or what do you think may have been most effective in raising awareness?
    Thank you for your time,
    Emily

    • Use of media sources–The speech clinic in South Korea had a huge banner on its three story building “ISAD October 22nd” to city proclamations to articles in papers or distributing stuttering information at a train station or in a park or individuals who stutter posting ISAD at their work.
      Just to name a few.

      Thank you Michael

  5. So interesting to be reminded how history informs the present and the future! Thanks for sharing!

    Ana Paula

    • thank you –it has been a great adventure thus far–waiting for the next 20 years 🙂

      warmly Michael

  6. You started something that’s one of the most important things for pws. Giving is OUR day of pride and inspiration to speak up is life changing. Many thanks for taking that first step towards such an amazing event, throughout the whole world!

    Keep talking!

    Anita S. Blom, Sweden