|About the Authors:Anita Scharis Blom, born and raised in the Netherlands, is living in Sweden. She worked as an operation manager for the Workers’ Educational Association. She was chairperson of the local stuttering chapter, board member, international contact and former chairperson of the Swedish stuttering association, vice chair of the European League of Stuttering Associations, and member of the advisory board for the International Stuttering Association. She was a national and international keynote speaker on stuttering and had her own stuttering consultant company. She was also a leader of national and international children and youth camps. She has stuttered since she was 9 and had a troublesome youth, now inspiring people who stutter of all ages, they can make a difference.” Her device is “S-s-sure I s-s-stutter. What are you good at?” firstname.lastname@example.org|
Speak your mind. What better theme for the ISAD online conference is there?!
There are so many people who stutter (PWS) who have so much to say, but who, for many different reasons, don’t speak up. Some because they are afraid to show their stutter, some because they were silenced, some because they felt unworthy, and some because they simply gave up as their stutter was too severe to keep trying. But also Speech and Language Pathologists (SLPs) who would love to share their theories and thoughts, but yet don’t. Because they feel what they have to say is not important enough, because their ideas were not accepted, because there was no funding for research, or because they didn’t want to come out as a PWS as being an SLP and having a stutter is not always accepted. There are also many family members and friends to PWS who don’t speak their minds. Some are ashamed, some feel helpless, some search but cannot find answers, some have a hard time accepting the fact that there is no cure.
Through some real life examples I would like to highlight some of the people I’ve met and why their voices have made a difference.
Kim’s parents told her not to speak up at family gatherings. They love and support her in everything, but they couldn’t face stuttering. Kim’s teachers couldn’t accept her stuttering either and told her to not continue her studies. She was also bullied by her class mates. Her future dreams shattered. Years later she decided to no longer be quiet, went back to school, scored the highest grades and became an international keynote speaker. She spoke to PWS, SLPs, schools, politicians, the media, and… to her parents.
Tracy often speaks at disability events. Other participants tell her that, when she speaks, it’s hard for them to follow, so they pay extra attention to when she speaks. Sign language interpreters and deaf people like it when she speaks, as the interpreters get the chance to interpret every word she says, instead of only a summary. Her friend and colleague Mike also spoke to the European Parliament. But when it was time for him to speak, they had no more time and closed the meeting. He didn’t accept that and spoke his mind, recorded it and sent it to the EP.
Peter has a tough stutter. He is a highly intelligent, fun guy, but his stutter has held him back and he didn’t speak his mind and mostly listened to what others had to say. At the European Youth Exchange he met so many people who “get it”, he is now preparing to present a workshop for PWS. Mirka was a very outgoing young woman, but was still trying to find her voice. After a youth exchange she became the mayor and is now working for the European Union and her voice is heard by many. Other participants speak their minds through being singers, musicians, artist and writers.
Gaby was so upset her daughter who stutters didn’t get the help she needed in school. She spoke her mind in school until they listened, and is now hosting children camps. Dina was so devastated to see an adult who stutters at a children camp, she cried. She thought her child would get the tools to become fluent, but the adult who stuttered made her realize that might not be the case. But after speaking to the adult, she realized that being an adult who stutters is not the end of the world. She is now talking to teachers about stuttering. Beth, who once was a participant at a children and a youth camp, is now being the spokesperson to young PWS. Tim, a brother to a PWS is making videos and running marathons to raise awareness and money for stuttering.
Milly is a SLP who had different ideas on how to treat PWS, but her ideas were not listened to. She started her own clinic where not just speech training was provided, but where a whole team gathered around the PWS. Besides speech training there is massage, physical therapy, a mental health team, an oxygen chamber, brain research and lots of other ideas that are out of the box. Gary, an SLP, would love to come to meetings where PWS gather, so that he can learn from PWS and ask the questions he cannot ask his clients. Today he’s an often-invited speaker at meetings for PWS. At an international gathering for SLPs, Jamie felt it was all ABOUT her, being a PWS, but not WITH her. She spoke her mind and became the first PWS to be a key speaker at that gathering.
Maria has had a troublesome youth and was silenced by the people around her. When she learned about the organisation for PWS she decided to no longer be silent. She started to become a leader for camps for children and young adults who stutter, to try and make them speak their minds and make way for both themselves and others. She tells the children who stutter (CWS) that the International Stuttering Awareness Day (ISAD) is a day specially for them. A day to get presents, go to the zoo, eat their favourite cake and celebrate. She tells their class that PWS are SuperHeroes, as they do things that are really hard to do, but they do it anyway. Her goal is to have at least one of the fluent students in the class to say “I too want to be a stutterer”.
Chris and Paula have come from silent CWS to adult role models for PWS. Chris always wears and gives away buttons and bracelets with funny and uplifting stuttering quotes. He hopes to inspire young PWS to start seeing themselves as strong, confident, intelligent and full of positive humour. Paula is a stand-up comedian, with stuttering as her trademark. Jim, who was told he was a hopeless case, is now a script writer and has made a movie on stuttering that might get an Oscar. Don, Janet and their friends are working on a project to raise the voice of young PWS as we speak.
So, why are there still so many people who think that, what they have in mind, is not worth being heard? Why are there still so many brilliant ideas that are not being told out loud? Why is the world still unaware of the ISAD being officially recognized by the European Parliament and why don’t even PWS know that sea green is our colour? Why does society still have no clue what stuttering is about? Why do we still need to fight for the rights of our CWS? Why is stuttering still not accepted in some countries? Why is stuttering still being “treated” by eating crickets and is stuttering “a curse from the devil”? Why is bullying and making fun of PWS still accepted? Could that be because we don’t speak our minds?
On the other hand, there should be people who should learn to stop speaking their mind. Those who still think stuttering is something “wrong”, something that should be “cured”. Would you tell a person in a wheel chair “If you only push yourself up and put one foot in front of the other, you can walk. I know exactly how it’s done.”? Or this lady who gave me the advice to skip the first letter of every word, as that’s what we (yes, she knew everything about stuttering…) block on. *s *at *ould *ake *ings *sier!
Let’s make a difference. Let the 22th of October be the start of an awareness campaign that will rock the world! On the ISAD, speak to at least one person about what day it is. Wear that bracelet, pin, t-shirt, ribbon and sea green clothes, and show pride. Contact the media. Talk a school or a library, leave leaflets and give a presentation on stuttering. Order at the Drive-In. Tell your colleagues about that stuttering event you have been to. Offer free hugs at the grocery store to show stuttering is not contagious. Organize a quiz walk together with your SLP at the hospital. Stand on a soap box and tell jokes. Give balloons to your clients. Celebrate the ISAD and give yourself a treat, as you’re worth it, for feeling the fear and doing it anyway. But most of all BE PROUD TO SPEAK YOUR MIND.
(And when you meet people who instead should not speak their minds, put on a smile and say ‘Sure I stutter. What are you good at?’ 😊)
Happy ISAD and keep talking
PS. Some of the stories are my personal ones, others are my friends. These names are being changed for different reasons.
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