About the author: Michael Sugarman was co-founder of the National Stuttering Project (NSP) in1977. He became the Executive Director of NSP 1978 -1981 and again in 1995 -1997. Published numerous articles on self help in academic journals and other publications. Recently, named to the Stutterers Hall of Fame. Currently, Chair of International Fluency Association's Suuport Group and Consumer Affairs Committee.
Without vision, there is only chaos.
On June 25, 1999, at the National Stuttering Projects (NSP) 16th Annual Convention, the largest consumer organization for people who stutter in the United States became the National Stuttering Association (NSA). Since January 1977, we have served the stuttering community, bringing hope, dignity, education, support and empowerment to children and adults who stutter.
Over the last two decades, the long-term impact of self-help groups for people who stutter has taught us that we are not alone. We have witnessed the birth of National Stuttering Awareness Week, International Stuttering Awareness Day and Year of the Child Who Stutters 1996. Consumers and professionals participated at national conventions and public education programs that reached out to adults children and teens who stutter and families. We have worked in partnership with other consumer and professional organizations to address the effects of stuttering. We have shared our experiences in books, newsletters, brochures and web-sites. Last, but not least, have fought to change the way we are viewed--not to be seen just as a "stutterer" but as people first, who stutter.
Since co-founding the NSA in 1977, I have had the challenge of serving as Executive Director of the NSA twice. First, from 19781981 and again on a volunteer, interim basis from 19951997. NSA is not an organization built around a single person. NSAs strength comes from its strong members wanting to make a difference in their own lives as well as the world around them. This paper tells about how the NSA started and grew and the range of activities that make us a full scope self-help organization. More on NSA activities can be found at their web site: http://www.nspstutter.org
NSA Is Born
In the fall of 1976, while in the University of California Capitol Hill student intern program, I talked to a Senators aide about an idea for an organization for people who stuttered called California Stuttering Association. By coincidence he had just read a newspaper article about Bob Goldman who wanted to organize a national organization called the National Stuttering Project (NSP). I called Bob and we decided to meet. ("NSA" will be used throughout this article to refer to both the National Stuttering Association and the National Stuttering Project (NSP) its former name.
Over a 4-hour lunch, Bob and I imagined a world without prejudice, full of self-help groups, advocacy, and public awareness. In January 1977, the National Stuttering Project was incorporated in California as a non-profit organization. Bob become the Executive Director and I was the Associate Director. NSAs first office was in Bobs den. I moved in with the Goldmans and slept on a couch. A newspaper article in the San Francisco Chronicle led us to our first set of Board members: Rich Wells (Chair), John Ahlbach, David Allen, John Harrison and Bob Tierney. We began the tasks of outreach to people who stuttered and fundraising to keep the project alive.
Use of the press and media has always been an important way to outreach to the community, especially adults and families of children who stutter. It was early Public Service Announcements (PSAs) about stuttering and articles in the local newspapers that kept calls coming into the first NSA office. Our first PSA generated over 2,000 calls and letters. Subsequent articles in "Dear Abby" and appearances on numerous radio and television shows, telling the public about the NSA, have kept the phones ringing off the hook.
When people call, the NSA has the opportunity to provide information and materials on stuttering, link callers up with local Chapters or make referrals for treatment. It is through these calls, combined with outreach at the local Chapter level, that keeps membership growing and new blood flowing into the organization, making it viable.
In May 1988, in response to the advocacy of Paul Castelleno, Dan Weiss and many other NSA members and in conjunction with their local congressional representatives, the president signed a proclamation declaring the second week in May National Stuttering Awareness Week. The NSA has been continuing to educate the public through news releases and PSAs during this week in May over the past 11 years.
Another way to outreach to the community is through the Speakers Bureau program. From the beginning we have maintained a list of adults who stutter and are willing to talk to community groups, schools, speech clinics and civic clubs about their experience. Not only do we educate the general public, but are able to link with others who stutter as well.
Self-help is not a unique concept to the stuttering community. Since the disability and patients rights movements in the early 1970s, self-help has been an important force in changing the way people with disabilities view themselves and are viewed by others. Self-help groups give people the opportunity to participate at the local level and connect with others who have similar concerns.
One of the most important components of the NSA was and continues to be its self-help groups. Self-help groups are where people who stutter meet on a regular basis in their local communities and help each other by providing support, peer counseling and friendship. Members have a common bond and the sense that they are not alone. At meetings, individuals are able to share personal experiences, learn from one another, develop new ways to cope with stuttering and share information about professional treatment. Many self-help groups also provide a local or regional focus for outreach, advocacy and education to the surrounding community.
Within 6 months after the NSA was formed, we had 6 self-help groups throughout California. Over the years, self-help groups, later called "Chapters", total approximately 77 and are found throughout the United States. Each self-help group is unique in terms of its leadership, membership and operation. NSA self-help groups are found in various settings, from speech clinics to living rooms. However, there are certain basic principles and common experiences that can be shared. NSA has an extensive list of materials on how to start and facilitate self-help groups. For more information about current Chapters and materials on self help groups go to is on the NSA homepage (http://www.nspstutter.org).
Newsletter and Membership
The first NSA newsletter was published in 1978 and consisted of a 2-page flyer that went out bi-annually. Letting Go, NSAs official newsletter introduced in 1983, became available on a monthly basis. It was and continues to be filled with personal stories and articles about stuttering and professional treatment.
More recently, the NSA has supplemented the newsletter with Our Voice, a section devoted to children and teens and; in 1999, launched a separate newsletter for children who stutter and their parents-Stutter Buddies.
NSA maintains a national membership consisting of people who stutter, including adults, teens and children and family members and treating professionals. This membership has grown from its humble beginnings to over 2,700 members today. All members keep in touch through the newsletter, while many participate in local Chapter work and annual convention as well.
Regional Workshops and Educational Materials
NSA held its first workshop The Stuttering Child: A workshop for Parents, in 1978. In the early 1980s, John Harrison became associate director and chaired the Program Committee that helped design workshops for the NSA. By the summer of 1988, NSP had presented fifty workshops around the country and continues to average 12 to 15 workshops annually. Many of these focus on self-image, empowerment, communication skills and personal feelings.
1996 became the Year of the Child Who Stutters, by NSA Board resolution, and as part of that effort symposiums were organized throughout the country. With a grant funded through American Speech-Language-Hearing Association, Consumer Division, NSA Chapters sponsored 12 such events from Long Island, N.Y. to Denver to Los Angeles. Hundreds of parents, professionals, teachers, adults, children and teens who stutter attended having an opportunity to network, share the latest information on stuttering therapies and to give children and teens the rare opportunity to interact with each other.
NSA over the years has published a wealth of materials on stuttering and issues facing people who stutter. Some of our earliest materials were collaborative efforts among teachers, parents, professionals and adults who stutter giving critical information on how to identify problems and deal with children who stutter. The current library has expanded to include such materials as Notes to Listeners, Being your Best Advocate, Coping with the Blues and a video and cassette tape library-recording people who stutter sharing experiences in self-help groups.
In 1984 John Ahlbach, then Executive Director, organized the first national convention in San Francisco. The convention theme was Anythings Possible. Three more annual conventions followed in 1985, 1986 and 1987, all held in the San Francisco Bay area. In 1988, the Houston NSA Chapter hosted the annual convention, and the conventions have been hosted in different cities by local NSA chapters ever since with an average attendance of 500. The first youth day was held at the Dallas Convention in 1991. Youth days focus special attention on teens and children and offer support and training to them and their families.
These were the annual convention locations:
1990 Anaheim (Los Angeles)
1992 San Francisco (International Conference)
1993 Washington, D.C.
1995 San Diego
1999 Seattle (Tacoma)
In June 1992 the International Conference for People Who Stutter was hosted by NSA in conjunction with its annual convention. Mel Hoffman, NSA board member, chaired the conference proceedings. 500 people who stutter and professionals attended from around the world.
Linking with Professionals
At its inception, the NSA was received with skepticism from the professional community. Many speech and language therapists were either threatened by or did not see the need for consumer empowerment and self-help.
Over the last two decades, NSA has slowly built relationships with professionals who understand the benefits and need for consumer advocacy and peer support. NSA members and staff have participated on panels at American Speech-Language-Hearing Association conventions and written articles for professional journals and publications. Speech-language professionals attend NSA conventions and consumers are often present at international, national or statewide professional conventions and meetings.
By 1980 professionals served as honorary members of the NSA board. These included Oliver Bloodstein, Ph.D., Ed Conture Ph.D., Gene Cooper Ed.D, Dean Engel Ph.D., Israel Goldiamond Ph.D., Ken Knepflar M.S., William Perkins Ph.D., David Prins Ph.D. and Marcel Wingate Ph.D. Due, in part, to the support of these individuals, NSA and professionals continue to work in collaboration today.
Finally, NSA members serve on the American Speech-Language-Hearing Association, Division 4, Fluency and Fluency Disorders committees and the Specialty Commission on Fluency Disorders to advocate and promote quality and consumer-centered speech therapy services.
Advocacy and Public Awareness
A major component of the NSA is to provide advocacy for people who stutter, including combating discrimination in jobs, media and the schools. Our first demonstration took place in 1979. A member of the Oakland self-help group was teased while ordering a mortadelli sandwich because he stuttered. Five group members picketed the deli with megaphones in hand stuttering "mortadelli". The owner of the store apologized and gave out free sandwiches.
NSA has provided advocacy assistance and advice to children in the schools; employees denied promotions and consumers needing health care coverage for speech therapy services. For more information on advocacy efforts of NSA, go to http://www.nspstutter.org/letgo/parry98a.html
NSA has also addressed negative stereotypes in the media. In 1988, Ira Zimmerman and the Orange County NSP chapter protested against the negative portrayal of a person who stuttered in the MGM movie "A Fish Called Wanda." A letter of apology was received from both Kevin Kline and Michael Palin, two of the starring actors in the film.
Linking with the World
NSA has been a member of the International Stuttering Association (ISA) since its inception. NSA participates in collaborative efforts around the globe with the International Fluency Association (IFA) and European League of Stuttering Associations (ELSA). Through such events as International Stuttering Awareness Day, NSA can work together with other organizations to share, give support and educate one another and the general public on the impact that stuttering has on individuals lives.
NSA is a non-profit corporation with by-laws and a member elected Board of Directors. In 1990 NSA expanded from its then California Board to include members from all parts of the country. Elections are held for each board member every three years. Board members can serve two 3-year terms.
NSA Board of Directors is responsible for developing the organizations mission, long and short-term goals, and maintaining fiscal responsibility. The Board is divided into a number of working subcommittees: Adult Programs; National Workshops; Parent/Youth; Advocacy; Public Relations and Professional Relations.
The administrative staff consists of the Executive Director, currently Annie Bradberry, Administrative Assistants Tammy Flores and Doris Dembe. Staff is responsible for overseeing the day-to-day operation of NSA and in conjunction with the Board and NSA members for implementing organizational goals.
Over the last two decades the following people has served as NSA Executive Directors and Chairs, of the Board of Directors positions. The four Executive Directors have been Bob Goldman (1977), Michael Sugarman (1979 to 1981 and again from 1995 to 1997), John Ahlbach (1982 to 1995) and Annie Bradberry (1997 to present). The four Chairs of the Board have been Rich Wells (1977 1982), Ned Kelley (1983), Paul Young (1994 1997) and Lee Reeves (1997 to present). Current Board members include: Bonnie Weiss, Sally Butcher, Bill Parry, Jim McClure, Randy Hoover, Nina Reardon, Greg Dempsey, Kari Kelso, John Swaney and Judith Eckhardt.
First posted September 28, 1999