Letting - National Stuttering Association

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LettingThe Monthly Publication of the National Stuttering Association October/November 2002

T H E C O U N T R Y ‘ S L A R G E S T S E L F - H E L P G R O U P F O R P E O P L E W H O S T U T T E R

4071 E. La Palma Ave, Suite A, Anaheim, California 92807 • 1-800-364-1677 • Fax: 714-630-7707 • email: [email protected] • www.nsastutter.org

IN THIS ISSUE...

FROM THE EXECUTIVE DIRECTOR ............................................. 2THE 2003 MALCOLM FRASER AWARD ...................................... 2SPEAKING OUT ........................................................................ 3WHAT’S HAPPENING ............................................................... 4OUR VOICE

JACKSON MONTALBANO: AN INSPIRATION TO US ALL ......... 6WANT TO KNOW HOW TO THROW A PARTY? .......................... 11WHY ARE YOU LOOKING AT ME LIKE THAT ............................. 12CHAPTER NEWS ..................................................................... 12

Join us incelebrating

our25th year

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The NSA Wins ASHA’S

INTRODUCTIONThe purpose of this document is to nominate

the National Stuttering Association (NSA, for-merly the National Stuttering Project) for ASHA’s2002 Distinguished Service Award. The NSA isthe largest support group in the U.S. for peoplewho stutter. This year, the NSA is celebrating 25years of providing support and empowerment forpeople who stutter, their families, and their cli-nicians.

As a member of the Steering Committee forDIV-4 for Fluency Disorders for eight years (threeof which have been spent as Division Coordina-tor), the chair of the Speech & Hearing Sciencedepartment at the University of Maryland, a re-searcher and clinician in fluency disorders andlanguage, and a board-recognized fluency spe-cialist and mentor, I have had a unique opportu-nity to observe the many contributions the NSAhas made in the field of fluency disorders. I cansay without hesitation that the NSA is an orga-nization that is worthy of recognition with theDistinguished Service Award, and that now is

Distinguished Service Award

the right time to recognize the NSA’s many con-tributions to our field.

In preparing the nomination, I worked closelywith two colleagues who serve on the NSA Boardof Directors: J. Scott Yaruss, PhD, CCC-SLP (Uni-versity of Pittsburgh and Children’s Hospital ofPittsburgh), and Nina Reardon, M.S., CCC-SLP(LaSalle County Schools, IL). Together, we solic-ited input from stuttering specialists, clinicians,researchers, NSA members, and families ofpeople who stutter. The respondents’ enthusi-asm and appreciation for the NSA’s many contri-butions – both for people who stutter and forthe profession – was overwhelming. It is clearthat people from across our field respect the NSAtremendously and find the organization to be amost valuable resource.

Throughout this document, I have includedquotations and comments from the people whoprovided their input so the awards committeecan see firsthand just how critical the NSA hasbecome to our field, in the past, for the present,

Over recent years, we have seen a signifi-cant growth in collaboration and partnershipbetween people who stutter and speech thera-pists. In countless ways, this collaboration hasbeen bearing fruit. Now, we are pleased to an-nounce that the American Speech-LanguageHearing Association (ASHA) has recognized theefforts and accomplishments of the NationalStuttering Association by awarding us one ofits highest honors.

The ASHA Distinguished Service Award(DSA) recognizes individuals or organizationsoutside of ASHA that have made a meaningfulcontribution to the field of speech-language pa-thology. According to ASHA, recipients of theDSA have had a significant impact on the Asso-ciation and the profession in one or more ofthe following areas: (a) consumer advocacy, (b)governmental affairs, (c) public awareness, (d)research, and (e) service to the Association.ASHA’s recognition of the NSA in this manner

marks a significant step in highlighting thegrowing cooperation between the professionalassociation and our organization.

The nomination proposal was prepared byNan Bernstein Ratner (coordinator of ASHA’sSpecial Interest Division for Fluency Disorders).Several prominent members of the professionalcommunity also contributed to the document.We are grateful to everybody who participatedin this nomination!

The proposal details how the NSA has mademajor contributions in, not just one key area,as required for this award...but in all five areas!Since many of you are not familiar with the fullscope of the NSA, we thought it would be en-lightening to publish the entire text of the nomi-nation packet.

We are grateful to everybody who partici-pated in this nomination, and we look forwardto receiving this prestigious award at a cer-emony held during the Annual ASHA Conven-tion in Atlanta, GA on November 22, 2002.

A StoryBY JOE LUKONG

The experience of stutteringis universal

THANK YOU FOR PUBLISHING A LETTER FROM ME in theJuly 2002 issue of your very informative maga-zine, Letting GO. I am now 37 years of ageand have stuttered all my life. Seventeen of mybrothers, sisters, half brothers and sisters stut-ter, too. It would appear that stuttering is he-reditary in the polygamous family I hail from.

Since there wasn’t any modern speechtherapy for stutterers in Cameroon, I wentthrough the available traditional, crude and attimes very unpleasant treatments for my stut-ter. Some of these “cures” consisted of drinkinga yellowish liquid substance that comes out ofthe roots of the rafia palm bush in marshy areascalled in one of the dialects of cameroon as kilu.Within the Nso tribe of Cameroon, it is believedthat this substance is a good cure for stuttering.

Another method I went through consistedof inhaling through the nostrils a greenish liq-uid substance that is squeezed from the leavesof the colanut tree and also inhaling the smoke

from Africa

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• SOME MEMBERS OF SCAC (l to r) BERNARD GHAMSI, MARIATHERESA, JOE LUKONG AND NESTOR CHIM.

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Many people collaborated to make this a successFrom the Executive Director:

Through my experience as Executive Direc-tor of the National Stuttering Association, myself-perception of my stuttering and what oth-ers think about my stuttering has changed dra-matically. This was the topic of the recent work-shop I did at the British Stammering Associa-tion annual conference in London September7th. I was asked to give a workshop and jumpedat the chance to visit Europe and see old friendsas well as make new acquaintances.

Preparing for this caused me to take sometime to reflect on my personal journey as ED ofthe NSA as well as how this experience hasshaped and formed my self perception regard-ing both my personal and professional life. Thisincludes my stuttering. Did I want to go to Eu-rope? Yes, of course! Did I want to give theworkshop? No way. I can stand before 500 plusof you at our annual conference speaking withease. Why? Because I am speaking to you. Weare one as we come together each year. I haveno fears in front of you. But I had a differentreaction in thinking about a workshop for a non-NSA audience. My fear began to hold me backin my preparation as I sat at night in front of mycomputer trying to put it together.

I have only given one workshop in all theseyears. I have one ready to go…but have beenafraid to actually try it out. I know…silly, sillyme…but this is my truth. So one night…onlyfour weeks away from departing for my Euro-pean adventure, I still had nothing on my com-puter screen and I contemplated ways to cancel.

They had already changed my time once andeven then I said…hey, if you need the time…Ireally don’t need to do this. They didn’t buy it…so I called my mentor and friend John Harrison,and we talked for hours. He tossed some ideasmy way based on all I have shared with him

about my stuttering journey, and he said, “Gosit with it. If nothing comes….then yes, you cancancel. But give it a chance.” By the end of thatnight it began to come together.

Did I do it? Yes! Did people come? Yes! Ihad standing room only and they sat on the floor!I kept thinking they would realize they were inthe wrong room and would get up and leave, soI joked that the door lock was jammed and theycouldn’t leave. It turned out to be a wonderfulexperience and leads me again to say to my threefavorite words….”because I stutter.”

For years “because I stutter” was associatedwith negatives. I can’t do this…because I stut-ter. I didn’t get that …because I stutter, and thishappened…because I stutter. Through years ofpositive self-talk and a lot of work, these threewords have taken on a new meaning for me.

Have you begun this transformation for your-self? You can begin now. Right now.

Success or changing the way we think andbelieve is not measured by how much we do,but rather, just by the fact that we are doing!Everything we do, every action we ever take isaffected by how much responsibility we take forour self. We can wait and let the world takeresponsibility for us, or we can find a way totake the world on ourselves.

When I began to change my self concept, Ilearned I had the freedom to choose how I feltabout me, my stuttering, my life! You can, too!

When my personal self-concept changed,everything changed. I found I did more, I talkedmore, I even stuttered more. This happenedbecause I was talking more, expressing myselfmore and in fact participating in life more!

Just doing…picking up that phone…raisingmy hand…this is doing my best. I learned itwas okay to stutter. When the desire to not stut-

ter because of what others thought lessoned, Ihad the choice as to how I reacted and howmuch talking I wanted to do. I could actuallymake a decision to talk or not talk without bas-ing it on my stuttering.

This was an amazing revelation!So often I hear...“only if”...if I didn’t”...and

“I wish I could.” By managing our thoughts wemanage our minds and by managing our minds,we give ourselves the freedom to choose whatwe think and believe about ourselves. When werealize we have the freedom to choose, we real-ize we have the freedom to change.

Baby steps. I strongly believe in baby steps.Simply noticing what you are doing instead ofconcentrating on what you are not doing…orwish you were doing is a big step. In time, thenegative feelings and emotions associated with“not doing” can and will be replaced by all thatyou will notice yourself doing.

Answering that phone, asking for that direc-tion instead of driving around, asking thatquestion...they all will be replaced with the self-realization that you have amazing strength andcourage and an incredible will to try again.

You will gain these realizations...all becauseyou stutter.

Annie BradberryExecutive Director

THE STUTTERING FOUNDATION OF AMERICA AND THE SPECIALINTEREST DIVISION FOR FLUENCY AND FLUENCY DISORDERS AN-NOUNCE A CALL FOR NOMINATIONS FOR THE 2003 MALCOLMFRASER AWARD, an award bestowed on an individualin recognition of excellence in the field of stut-tering. The award, consisting of a plaque and a$2,000 award from the Stuttering Foundationof America, will be presented at the 2003 An-nual Leadership Conference of the AmericansSpeech-Language-Hearing Association’s Divi-sion 4.

Among other criteria for eligibility, nomineesshould have highly respected, distinguished ca-

reers in speech-language pathology with specificand multiple contributions that have made sig-nificant positive impact on children and/oradults who stutter.

Contributions may be in the areas of 1)clini-cal services, 2) research, and/or 3) professionaltraining of clinicians.

To request nomination guidelines, pleasewrite to: Vivian Sisskin, Division 4 Awards Com-mittee Chair, c/o ASHA, 10801 Rockville Pike,Rockville, MD, 20852. Completed nominationpackets must be received at the same address ofASHA by February 15, 2003.

Call for Nominations for the2003 Malcolm Fraser Award

• CENTRAL ARIZONA CHAPTER MEMBERS WHO ATTENDEDANAHEIM WERE (l to r) BRIT KOHLS, TAMMY BETTINGER,LYNN BEJNAR, CATHIE LABARBERA, AND NAKOBEEJOHNSON.

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speaking outcomments and letters

OFF TO THE PEACE CORP.I wanted to get the word out that Woody

[Starkweather] and I have been accepted intothe Peace Corps and seem to be heading forAsia sometime in the spring. We have our Phila-delphia house on the market and plan to live inour Chincoteague, VA home until we leave.Then, rent that house while we are gone as it’sin such a great tourist area. [If any of you wanta great deal on a vacation log house at the beach,let me know. I’ll put you on the “insiders list.” ]

We have both stopped our private practices,and we have shut down the Birch Tree Founda-tion, although the web site will stay up a bitlonger. These have been hard decisions to make,but once made I feel quite content with them.

Tonight we had our last dinner with our in-ternational students who have lived with us thisyear. As many of you know, here at Penn we’vehosted international students learning Englishthese past three years. I think it is from this ex-perience that Woody discovered he loves toteach the English language. That was a precur-sor to the Peace Corps decision last June. It lookslike I will be teaching either EnvironmentalEducation or English.

I think we will have e-mail access where wego, and if so and you’d like to be included inmy “every-now-and-again” post of life in thehinterlands, do let me know. The Peace Corpsis a 27 month commitment, and they do en-courage visits from family and friends! So saveyour pennies. We’ll find out more specifics ofwhere and what as the months ahead progress.I think they handle it this way to test our capac-ity for frustration and our sense of humor.

I have certainly loved my life here in Phila-delphia. I still have many resources here I don’tintend to give up quickly so there may still betime to get together. After the next three weeksor so, you can write us at 5112 Richardson St.,Chincoteague, VA 23336 Our e-mails remainthe same for now.

. . . Janet Givens

IT’S A NEW WORLD!This past June I attended my second NSA

conference. I also went to the Boston confer-ence last year. After all the excitement of goingto Anaheim and meeting more great people, Ijust need to share my feelings.

I’m 47 years old and the last two years havechanged my life completely. For the better, ofcourse. I attended The American Institute forStuttering’s total immersion fluency trainingwith Catherine Montgomery in Manhattan, andI’ve also been a member of the NSA. Since thenI’ve been a free person.

When I say free, I mean freedom of emotionalpain that I lived with all my life. I was ashamedand felt so alone. I stuttered so severely, espe-cially when I was younger. My school days werehorrible, and I couldn’t even say my own name.

I couldn’t wait to be out of school. I neverwent on to college until two years ago. Sincethen, I realized I would love to be an SLP spe-cializing in stuttering and love getting an educa-tion. I deserve it.

One of my favorite things I do when I enterinto a new class is advertise that I’m a stutterer.I can’t believe I’d ever do that because of myold embarrassments. I would never have broughtup stuttering. It was just the way it was. Funny,I used to think to myself that maybe no one willnotice. I didn’t accept myself with my stutter-ing. I was in denial, and I had no control of myvoice, or had no idea of what to do. I juststruggled. I was in pain.

Since I learned tools and how to use them,and being with so many PWS, and leading sup-port groups, I’ve learned to accept myself as astutterer. It’s a great feeling. The NSA and allPWS are so important to me. I know what I need,and I need other stutterers in my life. I neverwant to miss an NSA conference. I get so muchout of being there, making new friends and be-ing with the old ones. I am in my comfort zonethere with everyone and having good fun, andwe learn new things all the time.

Another favorite of mine is the open micro-phone sessions. Usually I get emotional hearingothers speak about their struggles with fluency,and it always brings me back to where I need tobe. What great healing that is from all my pasthurts and pain. I love being a stutterer, becauseit’s who I really am. I’m proud to be me, andthat will never change.

I want to thank everyone at the NSA for allthe fun and work they do. Also, I want to thankmy wife, Lynne, for all her loving support andencouragement and my children for their loveand understanding.

I never have to feel alone again, and I’m soblessed to have so much to offer others. I’mcommitted to always taking care of myself anddo whatever is necessary to have self-respect andgood health. That’s what we really deserve.

. . . Bob KosteDON’T YA JUST LOVE THE WEB?

Hello, everyone! Our love story has beenpublished as one of the articles in the 2002 In-ternational Online Stuttering Conference - myaccount of how Liv and I met each other througha stuttering website and then fell in love.

To see this article, copy and paste the follow-ing link into your website browser: <http://

• PAUL AND LIV IN COLOGNE, GERMANYT ON AUGUST 2 NEAR THEEND OF THEIR TRAIN TRAVELS THROUGH EUROPE LAST SUMMER.

• NATHAN PRESLEY WITH ADRIAN PETERSON AND HIS BROTHERLEO PRESSLEY ENJOY THE CONVENTION.

NEW CONTINUING EDUCATION PROGRAMOn November 1st, the NSA launched its new

Continuing Education Program in New YorkCity. Over 100 speech-language pathologists and28 speech pathology students came to hearScott Yaruss, Ph.D., present “Practical TreatmentStrategies for School-age Children Who Stutter.”The NSA’s Continuing Education Program is ourcommitment to providing experiences.

In 2003 the NSA has more than 12 one-dayprograms planned throughout the U.S. to helpprovide school clinicians, private practitioners,and educators with opportunities to better sup-port children who stutter in developing effec-tive communications and enhance academic andsocial skills. Our thanks go to Scott Yaruss andother speech-language pathologists who aremaking this program possible.

www.mnsu.edu/comdis/isad5/isadcon5.html>. When you reach the website, scroll downto “Panel Discussions,” then to the last item inthis series, “Love Makes the World Go ‘Round:Spouses Meeting on the Internet.” You mightalso be interested in some of the other fine ar-ticles at this site. Regards to everyone.

. . . Liv and Piano Player Paul

HI, MY NAME IS NATHAN PRESSLEYI would just like to say that I had a wonderfultime at the convention. All the workshops thatI attended were well put together. I saw someof my old friends and I made a lot of new ones.I had a great time in California. Everything atthe convention was good. I hope to see you allnext year in Nashville.

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the latest news • hot items • who’s doing what • who went where • upcoming events • etc.

?What’s HappeningWhat’s Happening?

What’s HappeningWhat’s Happening ?

I F Y O U S T U T T E R , Y O U ‘ R E N O T A L O N E

give the keynote at the British StammeringAssociation’s annual conference in London. TheHarrisons began in London, then headed westto Wales where they visited Alan and BabsBadmington and Gina Waggott in Aberga-venny. John then ran a workshop in Herefordfor graduates of the McGuire Program. Back inLondon, John ran a mid-week workshop forspeech therapists. Finally, at the BSA conference,John participated on a panel, ran yet anotherworkshop, and presented his keynote to an au-dience of 200. You can read John’s keynote,entitled “How I Recovered from Stuttering” onthe Stuttering Home Page at http://www.mnsu.edu/comdis/kuster/Infostuttering/Harrison/john.htm.

The San Francisco chapter hosted their firstannual camping trip at Mt. Diablo State Parkover the weekend of August 10-11th. Peoplewho stutter, family, and friends from the Sacra-mento, San Francisco and San Jose chaptersenjoyed a fun-filled weekend of talking, bond-ing, board games, food, hiking...and lots of bugs!Everyone pitched in to make a delicious dinnerorchestrated by Robin Ottesen. Peter Kaofrom San Jose ran the BBQ while Clark Kelso,Kari’s husband, worked his Coleman Grill like amaster chef. Andrew Schmeling and his wifeJulie from San Francisco added their fabuloussense of humor and dry wit! On Sunday morn-ing, San Franciscan Dakota Brown cookeda great breakfast, and she got on so well witheveryone that she intends on participating in allfuture local NSA social activities! Nora O’Connorplans to make the camping trip an annual event.Anyone interested in participating in the North-ern CA NSA chapter meetings and social out-

ings please contact Nora at [email protected] San Diego and Orange County chap-

ters got together on August 31st for an outingat San Clemente Beach. This was their first jointventure and a total of 11 members joined in onthe fun. They are planning another get togetherfor the holidays.

On September 12th, five members of theMadison chapter spoke to a graduate class ofSLP’s at the University of Wisconsin. After NSAmembers talked about their stuttering andtherapy history, each student asked a previously-prepared question, which gave panel membersa further opportunity to expand on how theirstuttering affects their lives. The question andanswer session gave the students good insightson how people who stutter manage their speech.

On September 20th, CNN interviewedNicholas Brendon, who is best known for hisrole as Xander on Buffy the Vampire Slayer.There were many references to his stutteringproblem which almost thwarted the actor’s riseto stardom. The article can be viewed on theInternet at <www.cnn.com/2002/HEALTH/09/19/hln.bio.stuttering/index.html>.

The Philadelphia chapter had Dr. Joseph A.Stigora of the Baxter Speech and Fluency Cen-ter, Inc. in nearby Chadds Ford, PA, as a guestspeaker at its October 3rd meeting. The BaxterSpeech and Fluency Center is one of the nineproviders in the U.S. of the Janus SpeechEasyDAF/FAF Device that was recently featured on“Good Morning America.” Dr. Stigora informsus that there will be a segment on theSpeechEasy device airing on “NBC NightlyNews” with Tom Brokaw in the near future.

• SOME OF THE CAMPERS FROM THE SAN FRANCISCO, SACRAMENTO AND SAN JOSE CHAPTERS.

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On May 15th, the highest literary accoladeswere awarded to PWS and NSA member

Benson Bobrick. Benson received the “Liter-ary Award” of the American Academy of Artsand Letters at their annual ceremonial in NewYork. Few (if any) honors can exceed the com-mendation of one’s peers. The award commit-tee (a distinguished one) was made up ofHortense Calisher, Russell Banks, Horton Foote,Ann Beattie, and Galway Kinnell. The awardwas given in honor of Benson’s work as a whole,which the Academy commended for “richnessof talent,” and for “recreating the past with viv-idness and power.” Benson earned his doctor-ate in English and Comparative Literature fromColumbia University, and is the author of sevenbooks, including Knotted Tongues: Stutteringin History and the Quest for a Cure; The Storyof the English Bible and the Revolution It In-spired; The Life and Reign of Ivan the Terrible;and Labyrinths of Iron: Subways in History. Hisworks, reflecting a wide-ranging intellect, havebeen translated into German, Spanish, Italian,Russian, Dutch, Chinese, and Japanese. His mostrecent book (on the Civil War) will be publishednext year. Three cheers, Benson! That was quitean honor.

During the week of August 5th, ElaineSaitta and Janessa Thornton, a friend fromgraduate school, drove from Seattle to Reno fora little getaway. Along the way, they stopped offin Portland to meet up with fellow NSA mem-ber Pete Hrdlicka, and over breakfast, Elaineand Pete exchanged ideas on how to help thePortland chapter build its membership.

Elaine also stopped in San Francisco and haddinner with chapter leader Nora O’Connor andRobin Ottesen who were on their way backfrom their group’s weekend camping trip.

At the end of August, John and DorisHarrison flew to the U.K. for 21/2 weeks ofsightseeing and speaking. John was invited to

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During her two-week vacation, Executive Di-rector Annie Bradberry attended the BritishStammering Association (BSA) Annual Confer-ence on September 7th and 8th, where she gavea workshop entitled “Five Categories of Changethat Can Transform Your Life,” based on Annie’sperception of her own stuttering and her expe-rience as Executive Director of the NSA andhow she has changed over the years. Her work-shop, which played to a standing room audi-ence, focused on developing self worth and therewards of self-discovery.

After the BSA conference, Annie made herway to Bergen, Norway, where she attendedthe Nordic Conference for People Who Stutter.There she met up with old friends and expandedher worldwide network of contacts in the stut-tering community. Some of the people she sawon her trip were Hermann Christmann fromDenmark, Edwin Farr from the UK, AnitaBlom from Sweden, Benedikt Benediktssonfrom Iceland, and Bob Rothman, Christine

WHAT’S HAPPENING continued

• SOME OF THE THOSE WHO ATTENDED THE NORDIC CONFERENCEFOR PEOPLE WHO STUTTER IN BERGEN, NORWAY: (l to r) BENEDIKTBENEDIKTSSON (ICELAND), ANITA BLOM (SWEDEN), CHERYL VOSS(FROM CHICAGO; ANNIE’S CHILDHOOD FRIEND AND TRAVELINGCOMPANION), ANNIE BRADBERRY AND EDWIN FARR (UK).

• ANNIE BRADBERRY IN NORWAY WITH HERMANN CHRISTMANNFROM DENMARK.

Simpson and husband Tobe Richards. Anniecontinues to marvel at what grand experiencesshe’s having...all because she stutters.

• BIG NEWS!!! NSA OFFICE MANAGER TAMMY FLORES HASANNOUNCED THAT SHE’S ENGAGED! SHE AND HER BOYFRIEND,RICH, FLEW TO HAWAII FOR A MUCH DESERVED ONE WEEKHOLIDAY, AND RICH (MANY OF YOU MET HIM THIS YEAR AT THECONFERENCE) SURPRISED HER WITH A BEAUTIFUL RING. NO DATEIS SET YET...BUT MORE INFO WILL FOLLOW. CONGRATULATIONS,TAMMY!!!

• CHRISTINE SIMPSON AND HUSBAND TOBE RICHARDS.

of the burnt outer layer of a colanut seed.One of the methods I went through in an

attempt to cure my stutter was offering tradi-tional sacrifices to the gods as it was believedthat stuttering in our family was a curse fromthe gods to my grandmother who violated thelaws of the land. And that was why stutteringwas running in our family. All these cures yielded no positive results andmy stutter stood as an obstacle and a terriblemonster in my social, academic and economicprogress. My stutter held me down from doingmany things I would have loved to do – speak-ing being one of them – and consequently, thisaffected my interaction with friends and othersI had met in my life.

My primary school years were very difficultand troublesome. I grew up in an environmentthat was socially insensitive to the plight of thehandicapped, a society where people were nottaught to accept and respect those born withcertain handicaps, stuttering being one of them.A society where stuttering like any handicap istaken as a laughing matter.

In my primary school days I was given allkinds of nicknames by my schools mates andeven at times by the teachers themselves. I wasoften an object of ridicule, bullying and teasing.

I remember how I used to fight or weep when Iwas called by one of my nicknames – choh. Inour dialect, choh means large tongue. This namearose from the fact that one of our teachers ig-norantly associated my stuttering with the factthat I had an extraordinary large tongue whichdid not move well inside my mouth, and there-fore, I stuttered when trying to talk. My secondary and high school years were nodifferent. The bullying and teasing continued. Istill remember one incidence that took place inmy history lessons several years ago as if the in-cident had happened yesterday. On one of myworst days when my stutter was at its peak, Iwas asked by the teacher to answer a question.I stuttered very severely in trying to pronouncethe words “holy alliance.” The whole classstared at me with mixed feelings.

When the teacher started laughing, all thestudents joined him. After the class, they startedcalling me “Holy Alliance,” known for short asHA. Some of my classmates even today still callme HA.

All this humiliation and bad feelings arethings of the past. Since I started associatingmyself with my stuttering friends both in andout of Cameroon, I have witnessed a total revo-lution in my thoughts about my stuttering. I have

learned a lot on this topic, and this knowledgehas really helped me.

The greatest thing I have learned is that mystutter cannot and should not hold me downfrom doing the things I love to do. I can talk, orbetter still, stutter everywhere, and my stuttercannot hold me down from talking when andwhere I wish to.

I can proudly stand up and read in ourchurch, talk in social gatherings where I am in-vited, a thing I could not do in the past. I havelearned that many people are often interestedin what I say and not the stuttering manner inwhich I say it.

This knowledge and behaviour is what I alsotry to share with my colleagues in the SpeakClear Association of Cameroon (SCAC), a selfhelp movement for stuttering persons inCameroon whose activities I coordinate.

You readers who still consider that your stut-ter can stop you from doing many things shouldget up and no longer use your stutter as yourpillow on which to sleep.

• • • JOE LUKONG TARDZENYUY IS COORDINATOR GENERAL OF SCACAND A MEMBER OF THE INTERNATIONAL FLUENCY ASSOCIATION. HISADDRESS IS P.0. BOX 9598 DOUALA, CAMEROON, AFRICA. HIS EMAIL IS<[email protected]>. THE SCAC WEBSITE IS <WWW.STUTTERISA.ORG/CAMEROON.>

A STORY FROM AFRICA continued

• EACH YEAR THE MINNEAPOLIS CHAPTER GETS TOGETHER FOR ANOUTING AT JUDY JOHNSON’S CABIN. THIS YEAR’S EVENT WASFILLED WITH LAUGHTER, SWIMMING, CONVERSATION AND GREATFOOD. ATTENDEES INCLUDED: Back Row: MONA TOFT, RAYMONDBOWERSOX, ALFRED KAYE. Front Row: JUDY JOHNSON, ERIKZABEL, CAROLYN SAMPSON, FRAN ANKEL.

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OUR VOICENSA young people and parents speak out

BY CATHY OLISH

SHORTLY AFTER THE CONFERENCE, I SENT A NOTE TO TWODIFFERENT LISTSERVES FOR PEOPLE WHO STUTTER, ASKINGWHICH PEOPLE INSPIRED THEM THE MOST FROM THIS YEAR’SCONFERENCE AND WHY. The majority of the responsesI received indicated Jackson Montalbano as be-ing their inspiration because of his courage andstrength to speak in front of hundreds of peopleat this year’s closing ceremony. We were all soproud of Jackson and I hope he has inspired oth-ers to have the courage to do what he did thatday — say what he wanted to say regardless ofhow his words came out or how long it tookhim to say what he wanted to say. What he didand said while at that podium will not soon beforgotten.

Here’s Jackson’s story.He was born on May 5, 1994, in a suburb

in Illinois. Jackson’s parents, John and Chris,first realized that he had speech difficulties atage three, but did not associate it with stutter-ing at that time. One year later, Jackson startedtherapy to help him manage his speech.

After three years of therapy with the school’sspeech therapist, Jackson and his family wereintroduced to SLP Nina Reardon who was fi-nally able to put a name to his difficulties —stuttering. On that day, Jackson’s mother de-cided that everything she had tried to do toimprove his situation had not worked. Now shewas going to let Jackson steer his own boat.From this point on, he made all the decisionsregarding his speech, his therapy sessions andeven the tools he learned and when to use them.

There is not a support group for kids whostutter in Jackson’s area, but he sometimes hascontact with other kids who stutter by partici-pating in speech therapy groups which he thinksare a lot of fun. Aspects of therapy that havehelped Jackson better manage his stuttering,which is moderate, have been cancellations,easy onsets, slide outs and block outs. Jacksonenjoys going to speech therapy, except for thelong drives.

Anaheim was Jackson’s first conference, andone both he and everyone who attended willnot soon forget. When Nina first mentioned the

conference back in March of this year, Jacksonreally wanted to go as he thought it would bevery cool and a lot of fun. He arrived in Ana-heim with his mother and sister Nicole with noidea of what was in store for them, except for atrip to Disneyland and the baseball game on Fri-day night.

The people they met were “amazing” andthe workshops felt as if they had been tailoredjust for them. Jackson was surprised that therewere so many children who stuttered. Teenag-ers and adults, too. He had thought only chil-dren stuttered. Jackson was incredibly comfort-able the entire time he was at the conference.

When Nina asked Jackson to speak at theclosing ceremony, he felt uneasy and apprehen-sive. He knew there would be lots of peoplewatching and listening to him speak, but aftermuch thought, he decided he was up for thechallenge. When he was up at the podium look-ing at everyone waiting for him to speak, he wasvery nervous. He tensed up and then just startedto talk.

What Jackson said while high up on the po-dium was part planned and part spontaneous.He was the highlight of the closing ceremony

and he taught his audience to not be afraid todo things or say things because you stutter. Weshould all follow in his footsteps.

Jackson is the only one he knows in hisschool that stutters and his friends always askhim about it. He tells them that he was bornthis way and he stutters, and they say “cool!”His friends have been very accepting of his stut-ter. Although Jackson is nervous when speak-ing in front of groups, such as in school, hedoesn’t let his fear stop him. He just does it. Hehas never spoken in front of his class about hisstuttering but is thinking about doing that thisyear as he starts the third grade.

The one thing Jackson learned from his firstconference was that it is okay to stutter. He re-members everything he learned and experiencedat the workshops and sessions he attended. Oneof his favorite memories of the conference washanging out with the teenagers. He seemed toreally enjoy them the most — just talking tothem was a lot of fun. The scavenger hunt wasalso very memorable.

Among the friends he remembers meeting isa boy named Will. He was funny and nice, andJackson says it is nice to have a friend like him.

When asked what the word “stutter” meansto him, Jackson replied, “It means that I get tensein my vocal cords.” He said if he could draw apicture of the word stutter, he would draw some-thing like a ghost that is always flying aroundhim.

Jackson likes to play all kinds of sports, butbaseball is his favorite. His dad coached his littleleague team this year. Jackson also likes to readthe sports section of the newspaper and collectsbaseball cards. He enjoys watching funny mov-ies and his favorite movie is “Like Mike.” Healso has a pet dog named Max.

Jackson wants to be a pro baseball playerwhen he grows up. Watch out New York Yan-kees! Jackson is not going to let his stutteringstop him from doing what he wants to do, andneither should any of you!

�

Jackson MontalbanoAn inspiration to us all

7

ASHA’S DISTINGUISHED SERVICE AWARD continued

and well into the future.Specifically, I will demonstrate how the NSA

has played a key role in:(a) advocating for consumers, includingpeople who stutter, their families, and the clini-cians who work with them;(b) increasing public awareness about stut-tering and correcting common misconceptionsabout people who stutter;(c) improving educational opportunities forspeech-language pathologists (SLPs) and studentsthrough publications, CE programs, and collabo-rations with university training programs;(d) supporting research on stuttering by fos-tering collaborations between scientists and con-sumers; and(e) providing service to ASHA and its mem-bers.

The breadth of these contributions is trulyremarkable, and the value of the NSA for ASHAand people who stutter alike cannot, in my opin-ion, be underestimated.

CONSUMER ADVOCACY AND SUPPORTThe NSA’s mission is to bring hope, dignity,

support, education and empowerment to chil-dren and adults who stutter. The organizationfulfills this mission – and much more – everyday. Support for people who stutter is providedthrough several of the NSA’s key programs, in-cluding: local chapters, the annual conference,youth days and adult workshops, and numer-ous publications.

Local Chapters. The NSA began in 1977with a single group of people who shared thecommon bond of dealing with stuttering. Sincethat time, the NSA has grown to include morethan 3500 members in 80 local chapters cover-ing all 50 states. Weekly or monthly local chap-ter meetings provide the opportunity for peopleto come together with others who have facedthe same challenges, in an atmosphere of com-plete acceptance and understanding. For manypeople who stutter, the local meeting providesthe first real opportunity to speak freely.

Members who attend NSA meetings gainsupport by hearing about other people’s experi-ences, and they provide support by helping oth-ers with their own journey. Participants gain self-acceptance, confidence, and trust, and theseexperiences help them improve their lives. Hereis just one example of a member’s feelings aboutthe local chapter program. Marilee Finni, M.A.,CCC-SLP, wrote:

Through the NSA, I have had role mod-els that have changed my life. About a monthago, I was very anxious about a presenta-tion that I was giving in a high school aboutstuttering. I was anxious because I had beenteased the last time I went to this school.Before the presentation, I contacted [a mem-ber] via e-mail. He took the time to give methe most encouraging words you could imag-ine. My Cleveland chapter gave me manywords of encouragement when I was feel-ing like I wanted to give up.

While giving the presentation, I felt anextreme amount of freedom. I felt free to bewho I was. In feeling this, I was empoweredand was able to be an effective speaker de-spite my stuttering. The NSA has helped meto come in contact with my true self and indoing this, I have discovered a rich life like Ioften dreamed of.

Thank you NSA for giving me the oppor-tunity to understand that I am so much morethan my stuttering and for providing me withrole models that have gone before and havedone great things despite stuttering.Annual Conference. The NSA hosts an

annual conference that brings together hundredsof people who stutter from around the country.This year marks the 19th annual conference, andthe expected attendance is more than 600 peoplewho stutter, family members, and professionals.

For many, the annual conference is the high-light of the year. For people who know the isola-tion that can result from a lifetime of stuttering,there can be no parallel to the experience of fi-nally being able to express themselves freely andfully. Attendees find themselves surrounded bypeople who accept them for who they are, notwho they have to pretend to be.

Walter H. Manning, PhD, CCC-SLP, Profes-sor and Associate Dean, School of Audiology andSpeech-Language Pathology, University of Mem-phis wrote:

I attended my first national annual meet-ing in 1989. I quickly saw the power of thesupport that was available to the attendees,mostly people who stuttered, to be sure, butalso spouses, parents, the brothers and sis-ters of those who stuttered. It was clear thatthese people had a passion for their mission.Their mission was one of overwhelming andinclusive support for everyone who attended.I saw the power of this support, how it el-evated and encouraged those who took part,and how it carried over in the weeks andmonths following this annual gathering. Isaw how the NSA meets an essential needfor people doing their best to survive in theculture of stuttering...Unless you have been a witness to the im-

pact that the NSA has on its members, it can besomewhat difficult to explain. For years I’ve toldaudiences that everyone who is really interestedin helping those who stutter should attend atleast one annual meeting of the NSA.

Perhaps the best way to explain that impactis to tell a story from the 1989 NSA meetingthat I attended. It was near the end of the con-ference and the session was called “Open Mic.”The idea was that anyone in the large room of

nearly 300 people could walk up to the micro-phone and say whatever they wanted. Mostwould simply say their name and where theywere from – a formidable task for anyone whohad never spoken in front of more than a fewpeople. A daunting and magnificent challengefor someone who had stuttered for decades.

Each person who was able to gather the cour-age would walk down the aisle to the micro-phone and take their turn. Some were reason-ably fluent and spoke with relative ease. Othersstruggled and stuttered, sometimes dramatically,but took part. In each case everyone was com-pletely accepted, and the audience would ap-plaud for the participant.

Near the end of the one-hour session a youngwoman slowly walked down the aisle and ap-proached the microphone. The crowd quietedas she began to say her name. She began withthe first syllable, and it was obvious that she wasstuck. She tried again. And again, this time get-ting through the second syllable but not the fi-nal one. And still she would not give up. Theroom became completely silent in anticipationof the last syllable of her name. But the soundwas not there.

Finally she looked down, defeated. She slowlybegan to turn to walk back to her seat. At thatmoment someone in the crowd whispered “Goahead.” Others quickly took up the chant and ina few moments the entire audience was sayingtogether over and over “Go ahead.” She lookedup, turned back to the microphone, tried againand said “My name is Barbara.” There was notan eye without a tear in that large room wheneveryone spontaneously stood up and gave hera standing ovation.

The NSA’s Annual Conference also has a sepa-rate program just for youth and families. MaryEllen Kremer, parent of two teenage boys whostutter wrote:

As parents, it is just so hard to see ourchildren suffer. Two of my three boys stut-ter. What a feeling of desperation and sad-ness I felt. I certainly was not much supportfor either one of them, I’m sure. I tried tohelp, but I really didn’t know how to. Wearrived at our first conference very scared—feeling lonely and isolated. But I sure didn’tfeel that way for long.

We soon found so much love and accep-tance from the NSA members we had justmet that we were able to spill our hearts andsouls out about our experiences. That’s whenthe healing began.

WOW! We weren’t the only ones like thisafter all. At each conference, I listened andconsoled and cried with a lot of the newmoms and dads, and I think with each newencounter, I began to feel the load lifting offmy shoulders. By helping others, your heartbegins to heal. So now, instead of trying tofix each situation for my son, I let him knowthat the NSA is there for him.After every annual conference, the NSA

newsletter is filled with similar stories about howCONTINUED ON PAGE 8

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for teenagers who stutter.Stutter Buddies. A quarterly newsletter writ-

ten by and for children (ages 7 - 12) who stutter.CARE: Connections, Advocacy, Resources,

and Education. A quarterly newsletter that helpsparents face the challenges of seeking treatmentand help for their children who stutter.

The purpose of these newsletters is to helpNSA members know that “they are not alone”in facing their stuttering. The newsletters givepeople who stutter a voice – each issue includesstories about members’ experiences with stut-tering, sharing their challenges and successes.Through this, all members have the opportunityto receive and provide support and encourage-ment.

In addition, the NSA publishes books to helppeople learn to live with stuttering, including:

Preschool Children Who Stutter: Informationand Support for Parents. A new booklet thathelps parents achieve the best possible outcomefor their children through education and support.

Our Voices: A collection of stories from ourpublications for children, teens, parents and thespeech-language professional.

How to Conquer Your Fears of Speaking Be-fore People. A self-help guide to foster improvedcommunication skills in people who stutter.

Jeremy and the Hippo: A Boy’s Struggle WithStuttering and The Adventures of Phil Carrot:The Forest of Discord. Two children’s bookswritten by NSA members that can be used tohelp school-age children come to terms with theirstuttering and learn to communicate more ef-fectively.

The NSA has also developed numerous pam-phlets, posters, videotapes, and other resourcesthat help people who stutter feel connected tothe broader stuttering community. Many of thesepublications were developed in concert withASHA members, thereby demonstrating both thecommitment of the NSA to ASHA and the com-mitment of key ASHA members to the NSA.

The impact of the NSA’s outreach throughits publications is tremendous. In the past 25years, the NSA has distributed over 700,000pieces of literature to parents, clinicians, peoplewho stutter, schools, and hospitals. These effortshave touched thousands of lives. From showingolder children, teens, and adults who stutter thatthey are “not alone” in facing their stuttering, tohelping parents of young children who stutterrealize that there is hope and that their childrencan lead successful lives, to providing neededresources for SLPs who are unsure of how tohelp their clients, the NSA demonstrates its valuefor consumers and professionals every day.

PUBLIC AWARENESSStuttering is a poorly understood communi-

cation disorder. People who stutter are consis-tently portrayed in the media as being nervous,inept, or sensitive. Family and parent magazinesfrequently offer inaccurate advice and inappro-priate recommendations about what to do foryoung children who stutter, and such advice of

the NSA touches the lives of all who attend.Members talk about how they want to keep theirfeelings of confidence, acceptance, and empow-erment alive and with them throughout the year.What makes this truly remarkable is the fact thatthese feelings can be so rare for people who stut-ter. It is through the NSA that conference par-ticipants finally find this connection that dramati-cally and tangibly improves their lives.

Youth Days and Adult Workshops. Dur-ing its 25-year history, the NSA has directlytouched the lives of countless children and adultswho stutter through more than 200 youth dayprograms and more than 500 adult workshops.These amazing events bring people who stuttertogether – often for the first time – to experi-ence the love, healing, and support found in theNSA.

The importance of providing support to chil-dren at a young age cannot be underestimated.Now that the organization has been in existencefor 25 years, there are members who have“grown up” in the NSA. They received supportas children that helped prevent the developmentof negative feelings and emotions that so oftencharacterize stuttering. Today, they can continuethat legacy by providing support to the next gen-eration of children who stutter.

It is clear that this is only the beginning forthis organization, and as the NSA expands, thiscycle of life-long members supporting and nur-turing younger children who stutter will con-tinue and further enhance the impact of thisunique organization.

Debbie Nicolai, NSA parent, wrote:The NSA offered a Children’s Workshop

near our home, and my daughter and I wentwith the intention of learning little and leav-ing early. We ended up staying for the entireday and learning so much more than we an-ticipated.

My daughter had never met anyone whostuttered before and she was surprised andrelieved to finally meet other people whostuttered. Because she now felt that she wasnot alone, she gained a new confidence ofherself and her speech.

As we were waiting to attend the nationalconference, she decided that she needed totalk about her stuttering to the students inher classes. She wrote a speech about herfeelings while stuttering, what a listener cando to help a person who stutters, and someof the facts of stuttering. This class of eleven-

year-olds listened to my daughter with all ofthe bumps and repetitions of stuttering andapplauded her as she finished. There werea few tears and a lot of new respect for mydaughter.

I feel that this speech was made possiblebecause of the NSA. She sent a copy of herspeech to the NSA, and it was printed inthe NSA monthly newsletter. This articleprompted many supportive emails frompeople of all ages around the world sharingtheir experiences and offering their congratu-lations. My daughter’s confidence and ac-ceptance level of her stuttering has soaredin the past two years. I feel these changesare largely due to the NSA.Another example, from Julie and Mark

Whittaker, NSA parents:Just want to say a BIG THANK YOU for

the wonderful workshop in Tacoma. TheNSA speaker [a certified stuttering special-ist and NSA board member] was so knowl-edgeable and kind. I was in tears almost thewhole day. Not tears of despair but tears ofhope. Hope that my daughter will be ok withwho she is and that she stutters. Hope thatshe will not live in fear of being teased butthat she will have confidence to face herfears. Hope that she will know she is notalone.

Annie Bradberry [NSA Executive Direc-tor], you are a great role model for my daugh-ter. I have to let you know that after the con-ference my daughter was teased at schoolby a girl who has teased her quite often andhas really upset her in the past. This timeshe called my daughter the Stutter Girl andmy daughter told her, “So what! It’s just apart of who I am and a part of life” !!!! Shefeels so good about herself. Thank you, for Iknow the NSA workshops have helped herso much.The children express their gratitude to the

NSA as well. After a recent youth day, a childwrote:

My family and I went to the stutteringyouth day. I really enjoyed it because I waswith other kids who stuttered, like myself.Me and my parents will be coming to theannual conference this summer! I would liketo let other kids who stutter know that theyshould try a workshop out. The kids therestutter, and are interesting to be with. I feelopened up when we are all together.Stories like this are repeated over and over

again, demonstrating the power of the NSA forhelping children and adults learn to cope withtheir stuttering and get the most out of their lives.

PUBLICATIONS.The NSA also supports people who stutter

through newsletters, including:Letting GO. A monthly newsletter, with a

distribution of nearly 5,000 people who stutterand their families, clinicians and researchers instuttering, and others. Letting GO includes aspecial section entitled Our Voice, written by and CONTINUED ON PAGE 9

ASHA’S DISTINGUISHED SERVICE AWARD continued

9

ten leaves parents confused about how to helptheir children.

The NSA has provided an invaluable servicein working to correct these misconceptions andincrease the public’s understanding and accep-tance of stuttering. In the past 25 years, the NSAhas distributed over 17,000 public service an-nouncements (PSAs) to newspapers and radioand television stations and has announced count-less press releases and media alerts about stut-tering.

Another example of the NSA’s efforts to in-crease public awareness of stuttering was the“Year of the Child Who Stutters” workshops con-ducted nationwide in 1996. Funded by ASHA,these Youth Day events conducted simultaneousin twelve cities in the U.S. and Canada helpedchildren and families learn to live with their stut-tering while at the same time creating mediaawareness of stuttering and the need for im-proved public education about this disorder.

Similarly, the NSA played a key role in estab-lishing National Stuttering Awareness Week, ashighlighted by NSA Co-founder MichaelSugarman:

In May 1988, in response to the advocacy ofNSA members and in conjunction with localcongressional representatives, the presidentsigned a proclamation declaring the second weekin May National Stuttering Awareness Week.The NSA has been continuing to educate thepublic through news releases and public serviceannouncements during this week in May.

Dick Curlee, PhD, emphasized the impor-tance of these efforts: “Each year, NSA distrib-utes thousands of PSAs to print and radio/TVmedia, posters and literature about stuttering toclinicians, schools, and hospitals. Such activitieshave been highly successful in raising the aware-ness of the public about stuttering and about therights of persons who stutter.”

Larry Molt, PhD, CCC-SLP, Associate Profes-sor, Auburn University, and Associate Coordina-tor for the the DIV-4 steering committee, added:“NSA’s advocacy and public awareness effortshave been exceptional. It has served as a voiceto Hollywood and the media, sensitizing writ-ers, producers, directors and reporters to whatstuttering really is, and to the dangers of the ste-reotypical portrayal of stuttering. Because of theNSA’s efforts, many films and other media offer-ings have provided a more accurate portrayal ofpeople who stutter, which is so important forgeneral public understanding of the disorder.”

The NSA has worked tirelessly to increasepublic awareness of stuttering and to correct com-mon misconceptions about people who stutter.These efforts will ultimately lead to a worldwhere people who stutter can experience greateracceptance and understanding.

EDUCATIONNumerous surveys have shown that many

practicing SLPs are not comfortable with theirskills for working with people who stutter. TheNSA has worked to improve this situation byproviding needed education to SLPs and studentsalike, through its participation in graduate courseson stuttering, its growing continuing educationprograms, and publications designed to help SLPsand other professionals understand stuttering andprovide better service to people who stutter.

In-class presentations. The educationalservice that has been provided to ASHA mem-bers-in-training by the NSA has been immeasur-able. In the twenty years that I have been teach-ing fluency classes, scores of NSA members havecome to work with my graduate students. Myexperiences are far from unique. All of the fac-ulty we contacted regarding this nomination in-dicated that the local NSA chapter was availableto support their own teaching.

I cannot think of another self-help group thatis so diligent in its support of students and fac-ulty. Indeed, ASHA found the NSA’s in-class pre-sentations to be so valuable that it supportedthese efforts with a training grant so NSA mem-bers would be able to teach more students andclinicians about stuttering in a variety of settingsincluding graduate training programs, schools,and hospitals.

Continuing Education. For years, the NSAhas partnered with university programs to pro-vide continuing education (CE) programs to cli-nicians across the country. Many stuttering spe-cialists and faculty in fluency disorders at ASHA-accredited graduate training programs have foundthis to be particularly important in this time ofchanging scope of practice and training require-ments. The NSA is currently completing the pa-perwork to become a fully accredited CE pro-vider, and this will provide the opportunity forthe organization to greatly expand its CE efforts,thereby providing an even greater educationalservice to the profession.

Educational Materials. The NSA has cre-ated numerous brochures and pamphlets to sup-port clinicians, including pamphlets about howchildren can present information about stutter-ing in the classroom, how listeners can best in-teract with and support people who stutter inconversation, and how teachers and others canwork with children who stutter to facilitate suc-cess in the classroom.

Educating the Experts. Finally, a rathersurprising way in which the NSA provides edu-cation is in educating the experts themselves. Forexample, Robert W. Quesal, PhD, Professor andProgram Coordinator at Western Illinois Univer-sity and member of the DIV-4 steering commit-tee wrote: “As a professional, I have met many

people who stutter through the NSA, and thosepeople have helped me to broaden my under-standing of stuttering. My ‘one size does not fitall’ philosophy about stuttering has evolved frommeeting the many different individuals who stut-ter in the NSA and from learning about theirpersonal experiences with stuttering.”

Dick Curlee, PhD, CCC-SLP, Professor Emeri-tus, University of Arizona, added: “Its publica-tions and members have contributed in manyways to expanding my understanding of the chal-lenges of stuttering and the range and variety ofreactions to such challenges. My teaching andclinical work have been enriched as a result, ashas my own personal growth.”

Through all of these avenues, the NSA is pro-viding needed education about stuttering thatimproves the clinical practice of SLPs who workwith people who stutter and, ultimately, helpspeople who stutter lead happier, more produc-tive lives.

RESEARCHThe NSA has long supported the research ef-

forts of scientists in our field, whether throughsurveys of the membership conducted by theNSA leadership or through participation by localchapters and members in research studies.

Most recently, the NSA has greatly expandedits programs for supporting research and facili-tating interactions between scientists and peoplewho stutter. In 1998, Dr. Lee Reeves, the NSA’schairman of the board of directors, establishedan NSA Research Committee (NSARC), a panelcomprised of leading researchers in fluency dis-orders and consumer representatives from theNSA membership. This partnership representsthe first systematic collaboration between theprofessional and consumer communities in thefield of stuttering.

The NSARC is charged with conducting re-search of relevance to the field of stuttering and,importantly, fostering collaboration between sci-entists and consumers. Since that time, theNSARC has completed two research projectsexamining the speech therapy and support groupexperiences of NSA members (to appear in theJournal of Fluency Disorders).

The NSARC has also helped 15 independentscientists identify and recruit participants for re-search projects. Thus, this collaboration has sup-ported researchers seeking to learn more aboutstuttering and has furthered our understandingof stuttering in a real, tangible way.

This June [2002], the NSA will introduce yetanother initiative to facilitate research in fluencydisorders when it hosts the first-ever joint sym-posium for scientists and consumers. This sym-posium is specifically designed to facilitate col-laborations among researchers and to strengthenthe relationship between the community of sci-entists and the community of people who stut-ter. The reaction to this event from both research-ers and consumers has been overwhelminglypositive, with participants recognizing that theoutcome of this historic meeting has the poten

ASHA’S DISTINGUISHED SERVICE AWARD continued

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tial to set the agenda for research in stutteringfor years to come.

SERVICE TO THE ASSOCIATION AND ITS MEMBERSPerhaps one of the most important areas

where the NSA has had a positive impact on thefield of fluency disorders is in developing andimproving the relationship between people whostutter and the professional community. Nearlyeveryone we surveyed commented on this. Hereare several quotes from the authorities we con-sulted:

Stephen B. Hood, PhD., CCC-SLP, Chair,Speech and Hearing Science, Univ. of SouthAlabama: — “The NSA has done much to en-courage a positive, productive, and purposefulrelationship with SLPs who seek to understand,prevent, and treat the problem of stuttering inchildren and adults.”

Gary Rentschler, PhD, CCC-SLP, Clinic Co-ordinator, Speech-Language Pathology,Duquesne University: — “NSA is taking a lead-ership role in bridging the gap between research,clinical practice, and consumers by providing aforum for groups to work together. SLPs havepurposefully been included in NSA events, meet-ings, and activities. This has created a forum fordialogue between professionals and consumers.”

Bill Murphy, MA, CCC-SLP, Purdue Univer-sity and Member, DIV-4 Steering Committee: —“I feel the NSA started the whole revolution wenow see in stuttering therapy. I could stronglyargue that the NSA actually created the energythat led to the formation of DIV-4.”

Many of the respondents highlighted waysthat the NSA has been a key supporter of ASHAand its programs.

Dr. Dick Curlee, chair of the inaugural spe-cialty board for fluency disorders, wrote: —“The NSA strongly supported ASHA’s establish-ment of DIV-4 and the clinical specialty programin fluency disorders. Members have attendedDIV-4 conferences, served on division commit-tees, and Michael Sugarman, one of NSA’s co-founders, was elected to the inaugural SpecialtyBoard on Fluency Disorders and served as its trea-surer for three years. [The NSA’s current Chair-man of the Board, Dr. Lee Reeves, now serves inthis same position.] Thus, NSA has supportedASHA programs, as well as those members ofASHA with clinical or research interest in stut-tering.”

Even more striking were comments abouthow the NSA has worked to improve the rela-tionship between people who stutter and ASHAand its members. Here are several examples:

Walter H. Manning, PhD, University of Mem-phis. — “When I attended the early meetings, Ifelt a level of hostility directed toward SLPs fornot providing what many felt was adequate helpto people who stutter. As an SLP and someonewith a history of stuttering, I was sensitive tothat hostility. I felt that some of it was justified.Our level of service to those who stutter is stillnot what it can be. That may be a strange thingto point out in a letter recommending the NSA

for the ASHA Distinguished Service Award; how-ever, it is important to realize that over the past15 years, that hostility has abated and there isnow a dynamic and positive working relation-ship between the NSA and SLPs. One of the bestexamples of this “coming together” is seen inthe area of specialty recognition. Having beeninvolved in the early stages of Specialty Recog-nition for Division 4, I have no doubt that thedevelopment of the Specialty Board for FluencyDisorders would not have become a reality with-out the advocacy and support of the NSA.”

Stephen B. Hood, PhD, University of SouthAlabama: — “Largely through the efforts of theNSA, SLPs and consumers have gradually begunto combine resources and work together. Increas-ingly, SLPs are attending and participating in NSAevents; NSA leaders attend and give presenta-tions at ASHA events such as DIV-4 Leadershipmeetings and the Annual ASHA Convention; andNSA Chapters often have booths at meetings ofstate speech and hearing associations.”

Robert W. Quesal, PhD., Western IllinoisUniversity: — “The NSA has taken the leader-ship role in bringing SLPs and people who stut-ter together. Rather than fostering the ‘us againstthem’ mentality that ruled for so many years (andprobably hindered progress on many fronts), theNSA has worked very hard to ensure that SLPsand people who stutter – the ‘consumers’ – areworking toward the same common goals: tomake life better for people who stutter and theirfamilies.”

Lawrence W. Molt, PhD, CCC-SLP, AuburnUniversity: — “I also see what the NSA has donein service to ASHA. In its early days, there was asomewhat adversarial relationship between NSAand SLPs. Many members turned to NSA becauseof a history in failing to succeed with conven-tional speech therapy treatment, and some de-gree of anger and resentment was often present.The NSA leadership did not dwell on past fail-ures and disappointment. Instead, they wel-comed SLPs as NSA members. They saw thevalue of a pro-active relationship, and it has flour-ished, much to the benefit of both sides. As amember of both ASHA and of the NSA, I amproud to say that the efforts of the NSA haveimproved what SLPs have to offer people whostutter, and it has dramatically improved the re-lationship between professionals and consum-ers.”

The importance of the NSA’s efforts to buildties between consumers and professionals can-not be underestimated, particularly given theconcerns that many people who stutter havevoiced about their success in traditional treat-ment programs.

IMPORTANCE OF THE ASHA DISTINGUISHED SERVICEAWARD FOR THE NSA

Perhaps the most remarkable aspect of all ofthese accomplishments is the fact that the NSAis actually a very small nonprofit organization.All of these achievements were completed on ashoestring budget, and with only two regular staffmembers in the national office. The NSA does

its work through the dedication and commitmentof volunteers, from the membership and fromthe community of SLPs and researchers in flu-ency disorders. The people behind the NSA arepassionate about improving the lives of thosewho stutter, and they are devoted to their asso-ciation. Recognition of the impact of the NSAfor the profession of speech-language pathologyduring the NSA’s 25th anniversary celebrationwould mean a tremendous amount to this orga-nization and to the people who have devotedtheir lives to this worthy cause. Even beyondthis goodwill, however, is the tangible benefitfor improving and expanding the NSA’s outreachprograms that would accompany ASHA’s formalrecognition of the value of the NSA.

SUMMARYIn sum, the NSA has made significant contri-

butions to the profession of speech-language pa-thology at many levels. In reading the commentsfrom children and adults who stutter, parents ofchildren who stutter, SLPs, and researchers, I wasstruck by just how many lives have been touchedby the service of the NSA, on both the profes-sional and personal levels. The following com-ments summarize the feelings of those who con-tributed to this nomination:

Robert W. Quesal, PhD, CCC-SLP, WesternIllinois University. “We are lucky that the NSAhas been there to provide help and support forboth stutterers and SLPs. The NSA is the organi-zation at the forefront of research, treatment,and continuing education for stuttering.”

Lawrence W. Molt, PhD, CCC-SLP, AuburnUniversity. “As a person who stutters myself, Ifeel a deep debt of gratitude to the NSA for whatit has done for individuals who stutter in its 25years of its existence. Thousands of lives havebeen changed for the better because of their ef-forts. That alone makes the NSA worthy of theASHA Distinguished Service Award.”

Gary Rentschler, PhD., CCC-SLP, DuquesneUniversity. “NSA has been instrumental in rais-ing public awareness of stuttering and connect-ing with people who stutter who have isolatedthemselves from others; too many of whom hadgiven up hope. The connection and support is oftremendous benefit toward encouraging peopleto re-discover themselves. NSA has made sig-nificant contributions reaching out to children,adolescents and their families through publica-tions, conferences, workshops and information.NSA has taken self-help, the basic tenant of theorganization, and created a structure of empow-erment for many who stutter. The inclusive phi-losophy of NSA has built bridges instead of bar-riers. Their bridges have transported individualswho stutter, propelled those (students, commu-nity members, and the media) interested in learn-ing about stuttering to improved levels of under-standing, and provided new perspectives for SLPsworking with people who stutter.”

For all these reasons and more, the NSA isworthy of ASHA’s Distinguished Service Award,and this year, the NSA’s 25th Anniversary, is afitting time for this important recognition.

ASHA’S DISTINGUISHED SERVICE AWARD continued

T H A N K Y O U F O R S U P P O R T I N G T H E N A T I O N A L S T U T T E R I N G A S S O C I A T I O N

Keep Letting GO coming to your home or office,Mail or Fax to:4071 E. La Palma Ave., Suite AAnaheim, CA 92807Telephone: (800) 364-1677 • Fax: (714) 630-7707

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11

Memberships and Donations• Annual Membership @ $35 $ ____________

• Student Membership @ $20 $ ____________

• Additional Contribution: $25 $50 $100 Other $________ $ ____________

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Check here if you have elected to make an additional contribution and wouldlike to prorate the amount over the coming year. We will send a monthly reminderpledge card and return envelope right to your home or office. This is a great way tosupport the NSA, and it is easier on your wallet. Give a little each month, and helpthe NSA continue to reach out to the many who stutter.

Letting GO is published monthly except for two doubleissues per year by the National Stuttering Association,4071 E. La Palma Ave., Suite A, Anaheim, CA 92807.

Editor: John C. HarrisonAssociate Editor: Annie Bradberry

Assistant Editor: Cathy OlishArt Director: Doris B. Harrison

Our Voice Coordinator: Nina ReardonPhone: (714) 630-7600 / (800) 364-1677

Fax: (714) 630-7707e-mail: [email protected]

Home Page: www.nsastutter.org

ANNUAL MEMBERSHIP/SUBSCRIPTIONRegular $35.00 — Student $20.00

(Scholarships are available)Letting GO is a forum for views and information aboutstuttering. The opinions expressed are those of the in-dividual contributor, and are not necessarily the opin-ion of the National Stuttering Association. The NSAaccepts no responsibility for the accuracy of any opin-ion or information provided by any contributor, nor dowe endorse or reject any therapeutic strategies, pro-grams, or devices mentioned in these pages.

©2002 National Stuttering Association. All rights reserved.

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Want to Know How to Throw a Party?BY BERNIE WEINER

THE ROYAL OAK, MICHIGAN, CHAPTER HELD THEIR SECONDANNUAL MICHIGANDERS WHO STUTTER PICNIC ON AUGUST 17,and it was just as successful as the first with 26attending.

We had a fantastic time, beginning with thearrival of our out of town guests from Califor-nia, Toronto, St. Louis, Cleveland, and New Jer-sey. The festivities began on Thursday night witha dinner at Bahama Breeze, a Caribbean themedrestaurant, with Cari Caldwell, Ed Weiss, MarkDeBiasio, Cathy Olish, Sandra Patino, and my-self. Kudos to Cathy Olish for her many trips tothe airport and back to make sure that our outof town people saw a friendly face when theygot to Michigan

On Friday, we were joined by Jim Petrowicz,from New Jersey, for a trip to one of our world-class tourist attractions—Greenfield Village andthe Henry Ford Museum. And yes, thanks to

An entire weekend of fun

Cathy Olish, we spent about an hour riding in acircle on a steam locomotive.

On Friday night, we had 16 people from ourchapter and guests at a dinner on a restaurantpatio where we were able to watch the classiccars take part in the “Woodward Dream Cruise,”the world’s largest parade of hot rods, musclecars, and antique cars. It was quite the partyatmosphere.

Saturday was the picnic and once again, JimAbbott and myself were pleasantly surprised atthe turnout. The weather was perfect, and wehad lots of food. We did the usual picnic things—eating, horseshoes, more eating, water balloontoss, more eating, and a lot of talking (sand-wiched in between the eating). We hope to makethis picnic/dream cruise weekend an annualtradition. The two events just seemed to go greattogether.

We capped Saturday night off by going to ahouse party at the home of Cary Kreiger, an SLPat Beaumont Hospital. Once again, a great op-portunity to meet new people and enjoy thesummer evening.

We really enjoyed having people from out oftown attend. Cari Caldwell, Scott Yeager, EdWeiss, Jim Petrowicz, Sandra Patino, and MarkDeBiasio made it extra special for us this year.Hopefully, more people from the surroundingstates will join us in 2003. Jim Abbott and Ienvision this picnic as sort of a post-conventionget together, to continue the good vibes.

Once again, we all saw the effect of the NSAon people and how friendships just naturallyhappen, and continue to grow.

• • • BERNIE WEINER IS CO-LEADER OF THE ROYAL OAK CHAPTER.

Ask Royal Oak. . .

4071 E. La Palma Ave., Suite AAnaheim, CA 92807

NONPROFIT ORG.U.S. POSTAGE

PAIDANAHEIM CA

PERMIT NO. 74

Check out the NSA web site atwww.nsastutter.org

BOCA RATON, FLThe Boca Raton group met on October 2nd. Ninewere present, including two newcomers.Vkikesh Anand led the meeting with a demon-stration of the “Speaking Up” exercise from JohnHarrison’s book. This led to discussions of theimportance of confidence, how opening upabout speech can actually decrease stuttering,and how different therapies have different defi-nitions of success.

N E W C H A P T E RBOWLING GREEN, OHFive members were present at the first meetingof the new Bowling Green chapter on October21st with Rodney Gabel facilitating. Everyoneis motivated to make this chapter a very activeone and activities for future meetings includeinviting graduate students, family members, andsignificant others to attend. Members are inter-ested in using the group as an opportunity torefocus on therapy activities, learn more aboutstuttering, and have a chance to interact withother people who stutter. The group also is in-terested in exploring ways to interact with thecommunity through work with the schools andperhaps interacting with other chapters thatare close to them. They are planning on meet-ing one Sunday afternoon or evening a monthfrom 4 to 6 p.m. in the Department of Commu-nication Disorders at Bowling Green State Uni-versity.

N E W C H A P T E RLEHIGH VALLEY, PA NEW CHAPTERThis is a new chapter started by Kathy Rector.The chapter is in northeastern Pennsylvania, in

the Allentown, Bethlehem, Easton area. Theirfirst meeting was on September 25th.

MANKATO, MNThe Mankato chapter recently viewed a film bya producer in Belgium, Erik Lamens, a personwho stutters. Also, a member of the group sum-marized an article in the book To Say What IsOurs: The Best of Letting Go. Judy Kuster andPreston Smith, who attended the convention inAnaheim, passed out questionnaires—one fromthe Stuttering Foundation of America, and oneregarding chapters.

PHILADELPHIA, PAAt the September 3rd meeting, a fellow Toast-master of chapter leader Lou Madonna was theguest facilitator. He is a psychotherapist and acoach. Lou says that he had an engaging pre-sentation, asking those present to examine theirbeliefs, self-talk, and self-esteem with regard tostuttering. She gave some pointers on using yogaand meditation techniques for calming, relax-ing, and centering. Thirteen people attended thismeeting.

PITTSBURGH, PAAlan Reznick has stepped down as chapter leaderin Pittsburgh. Dan Kremer and Joel Lurie arethe new co-leaders. At the first meeting that Danand Joel facilitated, they had fun experimentingwith the Lombard Effect, the Edinburg Masker,and classical music. Each person in attendancews asked to stand, pick a “Story Starter” on theboard, and begin to tell a story. After a few min-utes, classical music was started as an accompa-niment and they were asked to alter their storywith the tempo or mood of the music. Dan re-ports that everyone told some very good stories.

UPSTATE SOUTH CAROLINAThis very active chapter planned an open houseon Tuesday, October 22nd at the Speech, Hear-ing and Learning Center in Greenville, SC. JakeOhlinger and Jimmy Walker were co-chairmenfor this. The purpose of the open house was toeducate others on stuttering as well as assist withquestions from people who know someone whostutters.

ChapterNewsfrom Bonnie Weiss

WHY ARE YOU LOOKING AT ME LIKE THAT?BY ANITA S. BLOM, SWEDEN

This poem is dedicated to an inspirational friendand was read during the Nordic Conference forPeople who Stutter in Bergen,13-15 September.

Why are you looking at me like that?Have you never seen me this sad before?I love to talkJoke and teaseTell you what I think and feelAnswer backExplain thingsTell you how much you mean to meTell you why I’m so sadBut the words, they just get stuck

Why are you looking at me like that?Have you never seen me this angry before?People talking pass meThey laugh at meThey cut me off and fill in my wordsThey don’t believe in meI can, but cannot show itDon’t get the chanceAnd I can’t even yell at themBecause the words, they just get stuck

Why are you looking at me like that?Have you never seen me this happy before?I laugh and I danceI chat and I jokeI don’t careI have a new friendI love my jobMy brother just calledMy daughter was praised in schoolAnd the words, they just keep on flowing

Why are you looking at me like that?Have you never seen me this confident before?Sure I can talk, if you just give me some timeSure I can do the job, if you just let me show itSure I sing you a song, if you just hear me outI feel goodI know I canI know I’m okI’m proud of who I amAnd the words? Who cares!