Speak your mind even if your voice shakes – Anita Blom

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?”  scatsis@gmail.com

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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Comments

Speak your mind even if your voice shakes – Anita Blom — 25 Comments

  1. Thanks for visiting my paper. Don’t hesitate to comment and ask any question you’d like. Also if you have any experiences you’d like to share. Hope to hear from you! 🙂

    • Hi, Aatje.
      Ik heb geprobeerd een welluidend kommentaar in ‘t Engels te schrijven, maar de vaardigheid bezit ik niet meer.
      Ik wilde alleen zeggen dat ik je enorm bewonder.
      Groetjes, Frank

  2. Thank you for sharing the stories of others, that is empowering. As a speech-language pathology graduate student, what advice would you give me in helping future clients that I might have that stutter wonderfully? How can I help empower them?

    • Thanks for your kind reply and your important question. And I love “stutter wonderfully” as yes, we should be proud of ourselves.

      Some people might argue against the word pride. “How can ” be proud of your stutter” and rather follow the path of “I want to get rid of my stutter”. One doesn’t rule out the other. The thing is, whether you want to work with your speech, want to work with coping skills or simply don’t care, it’s all fine and all should be respected. But some people only feel pride when they are fluent. Some therapies are all about getting a tap on the should when there is less or no stutter. I’d rather say to those who choose therapy, to not reward fluency on itself, as if that is the one and only goal (because that might imply that fluency is “good” and stuttering is “bad”, but to give the client a sense of pride when working hard in speech therapy, no matter the outcome. Those who work with the mental part of therapy, make them feel proud of who they are and all the things they are good at. And to those who the feeling-the-fear-and-doing-it-anyway. make them feel proud of smiling and turning their backs at the “stuttering dragon”, giving it no power. So find out what the goals of your client is, before even starting therapy, and meet him/her where s/he is. And when you see your client leave with a smile, you yourself should feel pride. 🙂

      When I speak to a class I ask the children (and the teacher!) what they are good at. The answers are many. I tell them I play the saxophone. 🙂 Than I ask them what they are not as good at. After some hesitation they reply (f ex “cleaning my room”). Also the teacher has to reply. I tell them I can’t speak as fast as they can because of my stutter. Than I make them realize EVERYONE is good at something and EVERYONE is not as good at something. Which makes everyone equal and as the things we are good at and not as good at are different, we can help each other. For how fun is it to be with a person who claims to be good at everything? Children understand this. When speaking to a class, it’s not focussing on stuttering, but on respect. Every person wants to be included, wants to speak and be heard, and don’t want to be made fun at.

      When you meet a child who stutters, be respectful and be curious. You have the therapy skills, but every child is different, so find out what the main problem is. Speech? Tension? Class mates? Self-esteem? Try to learn as many therapies as you can, so you can give the child (and its parents!) a smorgasbord of tools. Don’t give exercises you won’t do yourself. Include not only the parents, but also a friend or a close sibling, so they can help and do exercises together. And make them feel proud. Not about fluent words, but for trying. For coming. For being who they are. For all the things they are good at. For every stuttering word said in public, because that takes guts!

      Help them to find others who stutter. Children, adults. Tell them about conferences, about children camps and about famous people who (still) stutter. To make them know they are not alone. To be amongst people who GET it. To get role models. To feel normal. To come home.

      And if they leave your room with a smile on their face, YOU feel pride. 🙂

      Happy ISAD and keep talking!

  3. I lived this format of using many stories. It really gives a broad overview. And I think I recognized some people I know!

    • Thanks Daniele. And yes, you might know some. 😉 Some of them are my alter egos, some are friends. So happy more and more people speak their minds!

      Happy ISAD and thanks for the wonderful #inktober drawings!

  4. Hi Anita! Thank you very much for this wonderful post! I feel encouraged! I am a speech pathology graduate student and would like to know what I can say to help parents who are walking through this journey with a child? I also have children on my caseload who are in kindergarten and are not aware of their stutter. In this early stage, how can I help shape their thoughts about stuttering?
    Thanks in advance!

    • Hi Taylor and thanks for your kind words and important question.

      Parents are of major importance for a child. To be accepted, no matter what, makes all the difference. My stutter was not accepted. Not at home (I was told to stop, to not seek attention, to not speak up at family gatherings, etc), not at school (I was asked to stop, was not allowed in one class, was bullied by students and teachers, and was told to stop studying, as I wouldn’t go anywhere anyway), and not apply for the job I wanted, because of my stutter. Needless to say I tried to kill myself. Everything changed when I met the stuttering community. I learned there’s nothing wrong with me as a person, that it’s not my fault, that I can do anything if I go for it, thanks to the support of others. Today I have a job, a husband, a family, I have travelled the world being a keynote speaker BECAUSE of my stutter, I have teached teachers, and I have been a leader of children and youth camps (http://isad.isastutter.org/isad-2018/papers-presented-by/stories-and-experiences-with-stuttering-by-pws/experience-of-a-pws-heaven-where-everybody-stutters-jurjen-de-jong/) for almost 30 years.

      I have met parents at children camps who thought they would get all the answers, and maybe even a pink pill for their child. And than they meet me, an adult who stutters, and they are devestated. Than I ask them if I appear unhappy… Yes, stuttering sucks and is a tough battle, every single minute of the day (for even when we’re silent, we still think of it). But that doesn’t mean life is over. The more they learn about stuttering, the more they learn about the rights of their child, the more the child, AND THEY THEMSELVES, meet others in the same situation, the more they will realize that they can change the situation.

      The child may not become fluent, but might learn to get a less bumpy speech, and most of all, feels pride and realizes he’s a super heroe, as he’s having difficulties, but is doing it anyway. And gets to do lots of fun stuf, like going to fun meetings and camps, has his own special day, and is standing out (the first punkers were seen as crazy, then it became a movement 🙂 )

      The parents learn what they can do to help their child, at home, but also to demand help in school for their child. They learn it’s not their fault (which many still think…) and get to meet other parents with the same fears and experiences, and together find pride and joy.

      Are you shure kindergarten children aren’t aware of their speech? A question mark on the face of the teacher, a lift of an eyebrow or a painful looking away from a parent, and soon a comment from another child, will make them aware. So the thing is to make sure that, when they are aware, they directly learn that yes, they have a different speech, but that’s ok. That stuttering, and they themselves, are accepted as they are. At that age it might be too soon to start therapy, but you can start with the parents, give them knowledge, give them tools, give them hope, show them this conference, show them the national stuttering association and (if you’re in the USA, show them FRIENDS and SAY), show them social media (f ex Voice Unearthed).

      I have also replied with a long reply to Robilind above that might be of help.

      Happy ISAD and keep (them) talking!

  5. Hi, Anita!

    Thank you so much for this beautiful post. It is so encouraging to hear all of these stories from so many different perspectives. I am inspired. I love your motto: “Sure I stutter. What are you good at?” I think this is such a positive way to change people’s view of stuttering. I am just curious, what kinds of reactions do you get when you use this phrase? Are people typically receptive to this perspective?

    • Hi. Thanks for your nice comment and interesting question.

      I came up with the quote years ago (and it’s now become viral, not in the least as StutteringIsCool is using it 🙂 ) when I learned to meet bullies with a reply instead of anger and sadness. I am good at stuttering. I’ve been doing it for years. And no matter how you try to mimick me, I’m the expert, as I’m the original. 😉

      I made a button with the quote and many children now wear it. (I even have it as a t-shirt now 🙂 ) It’s a great icebreaker when people first have the question mark on their forehead when I stutter, but when they see the button, they relax, smile, realizing I stutter and not having a fit, and understand that it’s ok to talk about it. I’ve had many people telling me their family member/friend/neighbor stutters, and/or asking me questions about stuttering.

      But yes, I’ve had pws who don’t like it at all. They are still uncomfortable with their own speech and have a hard time accepting that stuttering is ok, and that you can give a funny twist to it. They have tried to stop the button, but as so many people love it, it’s gone viral. 🙂 Stuttering is an every day challenge, but that doesn’t mean we’re any less. On the contrary. We’re super heroes for keeping on facing the challenges. And that’s what I’m good at. 😉

      Happy ISAD and keep talking.

  6. Thank you Anita, I love your thoughts about the power of speaking your mind! I also love the way you have cultivated an awareness of the powerful contributions of the people around you. I think it is so easy to focus on our own daily experiences and not look around at all the good that is happening around us. You’ve inspired me to take note of the people around me that are making a difference. I think that really noticing others’ strength and influence makes these acts reverberate and can encourage us to emulate them. You are a perfect example because by noting the powerful voices of others you have shared your own powerful voice. Thank you Anita!

    • Thanks so much for your kind words, Bec. As I replied to the previous person above this post, stuttering is a challenge. We can either sit and wait for others to find a solution, or make a change ourselves. To speak our minds is a first step to get rid of our chains, and at the same time educate the people around us and pave the way for those who haven’t found their voice yet.

      I’ve hit rock bottom when I, after years of being unaccepted at home, bullied at school and denied a carreer, wanted to end my life. Luckily I found the stuttering community and learned I’m ok, stuttering is ok, and that I can make a difference. From being told not to study, as I wouldn’t go anywhere anyway, I became a keynote speaker and travelled the world THANKS TO my stutter, and I also became a teacher… to teachers! 🙂 I’m educating all from pre-school children and teachers, to European Parliament politicians, and pay forward a feeling of pride and determination to change our situation at children and youth camps.

      If you read Jurjen’s paper http://isad.isastutter.org/isad-2018/papers-presented-by/stories-and-experiences-with-stuttering-by-pws/experience-of-a-pws-heaven-where-everybody-stutters-jurjen-de-jong/ you see a great example of feeling pride and determination, as they are now working on an international project to raise awareness! 🙂

      Share sadness and it deminishes. Share joy and ot doubles. And even one single person can make a difference by talking to another person who nevr knew what stuttering is about. Let’s create rings on the water, let’s create the butterfly effect. Let’s speak our minds!

      Happy ISAD and keep (them) talking!

  7. As always, a wonderful, insightful contribution. You continue to make such big differences in the lives of people who stutter all over the world. I’m grateful that you take the time and expend the energy to do what you do.

    Pam

    • Thanks so much Pam. Coming from you, a woman who changes lives herself, means a lot to me. The great thing of a voice is that, even when energy fades, the voice can still be heard. So let’s keep talking! Happy ISAD!

  8. Anita,
    Part of what made this post so great was how you included so many personal stories and testimonials. Every single one of them is special, and each of them are more inspiring than anyone can ever understand.
    I also really loved how you emphasized that those with a stutter should speak their minds and not be afraid of what others might say or think, and I also loved how you mentioned that others should not speak their minds at all. Do you think that someday we will live in a world where people understand that a stutter does not define the intelligence or the character of a person?

    Thank You,
    Morgan

    • Thank you so much for your kind words and your important question, Morgan.

      The world doesn’t know much about stuttering. They think it’s about a few word repititions, as those who stutter a lot might not speak up and those who are covert won’t stutter all. And there are so many myths about us. We (stutter because we) are nervous, weak, uncapable and even violent (thank you media…). And… we need to get cured???

      Stuttering is the black sheep amongst disabilities, as people don’t understand the storm that’s going on behind the stuttered words. And decades of shame, media and bullying made us try to hide it. And because so many people don’t get it, we need to tell them. Tell them what it’s like, how we feel, the help we need, the help we DON’T need, but also help those who still think they are alone and unwanted.

      I’ve hit rock bottom when I, after years of being unaccepted at home, bullied at school and denied a carreer, wanted to end my life. Luckily I found the stuttering community and learned I’m ok, stuttering is ok, and that I can make a difference. From being told not to study, as I wouldn’t go anywhere anyway, I became a keynote speaker and travelled the world THANKS TO my stutter, and I also became a teacher… to teachers! 🙂 I’m educating all from pre-school children and teachers, to European Parliament politicians, and pay forward a feeling of pride and determination to change our situation at children and youth camps. And they are paying it forward, now hosting camps, becoming board members, starting stuttering projects and speaking their minds.

      But we’re far from there yet. There are still people who think they are alone. The media is still projecting stuttering as being something wrong, and showing quick fix documentaries. Parents still think it’s their fault. Teachers still lack knowledge. And children are still bullied to lethal extends. It’s said that Moses stuttered and thousands of years later we haven’t come that much further. So I don’t think a world that understands stuttering will be a fact during my lifetime. But if we all help out and speak up, the people who understand will increase, slowly but steadily. SLPs have the answers when it comes to therapy and research, but we have the answers when it comes to our own stuttering. We are the experts! So why hold back and feel ashamed of something that’s not our faults, something we’ve done for years and learned so much about. People won’t reed books, not even leaflets about stuttering (as long as they don’t havea connection themselves), so the only way to let them know what great, intelligent people we are, is to stop feeling shame, stop hiding, and start speaking our mind and tell them what it’s like to stutter and how they can make a difference. We have a voice and a message that’s worth repeating.

      Happy ISAD and keep talking.

  9. Thank you so much for such an insightful post. As a speech student it really helps me wrap my mind around what one who stutters is going through and how they feel about it. As I continue my journey with my studies what tips could you give me when it comes to making my patients feel confident?
    -Jenna

    • Hi Jenna. Thanks for your knd words and important question.

      I’ve hit rock bottom when I, after years of being unaccepted at home, bullied at school and denied a carreer, wanted to end my life. Luckily I found the stuttering community and learned I’m ok, stuttering is ok, and that I can make a difference. From being told not to study, as I wouldn’t go anywhere anyway, I became a keynote speaker and travelled the world THANKS TO my stutter, and I also became a teacher… to teachers! 🙂 I’m educating all from pre-school children and teachers, to European Parliament politicians, and pay forward a feeling of pride and determination to change our situation at children and youth camps.

      To learn from my “stamily” that I’m fine as I am, that I’m not alone, that stuttering is not my fault and thus nothing to be ashamed of, made all the difference. Later on I learned that my voice, stuttering and all, is a powerful one. F ex when people tell me that, when I speak, they listen, as they have to pay more attention to listen to what I say. That my buttons with witty stuttering quotes (Sure I stutter, what are you good at, is my “baby” and has gone viral 🙂 ) makes me feel confident, wipes off the question mark off people’s faces and opens up for conversation. That my life story helps others to find their voice.

      When I speak in schools I tell the class that I’m a super hero, as I face hurdles, but overcome them, that I get paid to travel the world (as a keynote speaker), that I have my own fun day, that my DAF device makes them stutter, but not me, that I get to go to fun events etc. And that stuttering is the new cool, as doing something different is cool, just like the first punkers, the first ones with blue hair, a newly found nature species, etc. And of course, the cws gets a special button.

      Yes, I know this is over the top, but it works with children. They ask me for my autograph, fight over who’s going to sit next to me over lunch and the word, that this funny lady has this awesome machine that makes kids stutter, spreads before I reach the next class. Te cws learns that stuttering is ok, the teacher learns there are more children in the class than they realized (as kids soon raise their hands saying “I too stutter”), the class mates learn that stuttering isn’t easy and they need to give a hand and that bullying is not ok, so it’s a win-win to all to learn more.

      I would also love to see siblings and friends enter the therapy room. To learn more about stuttering and to join when doing assignments, as it’s more fun and more acceptable when you’re both doing something that’s uneasy.

      Those we speak their mind are great role models, so show them the way to self help groups, to children and youth camps, to this online conference, to the social media groups and to the ISAD. We’re not alone. We have a voice with a message that’s worth repeating. And SLPs and students are so welcome to our events and share the joy of all being an important piece of the puzzle!

      Happy ISAD and keep talking.

  10. Hi Anita,
    I just want to say thank you for such an inspiring, and amazing submission. I love how you included so many personal experiences, I also really love how you acknowledged that people with stutters shouldn’t be afraid to speak up or say what’s on their mind. Very well written also! I would like to know your advice to give to young kids who quite don’t understand yet?

    • Hi Logan. Thanks for your kind words and your important question.

      Are you sure young kids don’t quite understand? A question mark on the face of the teacher, a lift of an eyebrow or a painful looking away from a parent, and soon a comment from another child, will make them aware. So the thing is to make sure that, when they are aware, they directly learn that yes, they have a different speech, but that’s ok. That stuttering, and they themselves, are accepted as they are. At that age it might be too soon to start therapy, but you can start with the parents, give them knowledge, give them tools, give them hope, show them this conference, show them the national stuttering association and (if you’re in the USA, show them FRIENDS and SAY), show them social media (f ex Voice Unearthed).

      Parents are of major importance for a child. To be accepted, no matter what, makes all the difference. My stutter was not accepted. Not at home (I was told to stop, to not seek attention, to not speak up at family gatherings, etc), not at school (I was asked to stop, was not allowed in one class, was bullied by students and teachers, and was told to stop studying, as I wouldn’t go anywhere anyway), and not apply for the job I wanted, because of my stutter. Needless to say I tried to kill myself. Everything changed when I met the stuttering community. I learned there’s nothing wrong with me as a person, that it’s not my fault, that I can do anything if I go for it, thanks to the support of others. Today I have a job, a husband, a family, I have travelled the world being a keynote speaker BECAUSE of my stutter, I have teached teachers, and I have been a leader of children and youth camps (http://isad.isastutter.org/isad-2018/papers-presented-by/stories-and-experiences-with-stuttering-by-pws/experience-of-a-pws-heaven-where-everybody-stutters-jurjen-de-jong/) for almost 30 years.

      I have met parents at children camps who thought they would get all the answers, and maybe even a pink pill for their child. And than they meet me, an adult who stutters, and they are devestated. Than I ask them if I appear unhappy… Yes, stuttering sucks and is a tough battle, every single minute of the day (for even when we’re silent, we still think of it). But that doesn’t mean life is over. The more they learn about stuttering, the more they learn about the rights of their child, the more the child, AND THEY THEMSELVES, meet others in the same situation, the more they will realize that they can change the situation.

      The child may not become fluent, but might learn to get a less bumpy speech, and most of all, feels pride and realizes he’s a super heroe, as he’s having difficulties, but is doing it anyway. And gets to do lots of fun stuf, like going to fun meetings and camps, has his own special day, and is standing out (the first punkers were seen as crazy, then it became a movement 🙂 )

      The parents learn what they can do to help their child, at home, but also to demand help in school for their child. They learn it’s not their fault (which many still think…) and get to meet other parents with the same fears and experiences, and together find pride and joy.

      But also schools are an important goal for you to reach out to. When I speak in schools I tell the class that I’m a super hero, as I face hurdles, but overcome them, that I get paid to travel the world (as a keynote speaker), that I have my own fun day, that my DAF device makes them stutter, but not me, that I get to go to fun events etc. And that stuttering is the new cool, as doing something different is cool, just like the first punkers, the first ones with blue hair, a newly found nature species, etc. And of course, the cws gets a special button.

      Yes, I know this is over the top, but it works with children. They ask me for my autograph, fight over who’s going to sit next to me over lunch and the word, that this funny lady has this awesome machine that makes kids stutter, spreads before I reach the next class. Te cws learns that stuttering is ok, the teacher learns there are more children in the class than they realized (as kids soon raise their hands saying “I too stutter”), the class mates learn that stuttering isn’t easy and they need to give a hand and that bullying is not ok, so it’s a win-win to all to learn more.

      Happy ISAD and keep (them) talking!

  11. Hi Anita!
    I’m so glad you commented on the article I wrote as part of my team, so that I recognized your name on the list of contributions and could come check out your piece. I appreciate that in sharing these success stories of people who stutter, there are two things each story has in common: 1) you don’t minimize the reality of their struggles and their pains they’ve endured, and 2) their success is in no way measured by the nature of their speech, rather, by what they’re saying and how they’re contributing by speaking their mind.

    So many times I think these essential pieces of the stories of people who stutter are omitted or minimized. I’m glad to see that narrative is changing with your words. My favorite of the stories was Maria. I love the idea of children celebrating their stutter by going out for ice cream, going to the zoo, etc. The professor at Idaho State University who teaches the Fluency Disorders course is a person who stutters. Maybe I should bring him a cupcake tomorrow morning!

    In pondering what you’ve said and what to ask, I keep thinking about how you’ve facilitated the presentation of these stories of people who stutter. My question is, what, in your mind, as someone who stutters and has gathered stories of people who stutter, is the most important aspect to include in a person’s story regarding their experiences with stuttering? Do you have certain questions that you find are most helpful in starting a conversation? What questions would you want to be asked in an interview regarding your experiences starting?

    • Thanks for your amazing respons! Yes, you are so right about 1. and 2. The struggles are there. Stuttering sucks. But life doesn’t! And life isn’t over just because we stutter. I’ve hit rock bottom when I, after years of being unaccepted at home, bullied at school and denied a carreer, wanted to end my life. Luckily I found the stuttering community and learned I’m ok, stuttering is ok, and that I can make a difference. From being told not to study, as I wouldn’t go anywhere anyway, I became a keynote speaker and travelled the world THANKS TO my stutter, and I also became a teacher… to teachers! 🙂 I’m educating all from pre-school children and teachers, to European Parliament politicians, and pay forward a feeling of pride and determination to change our situation at children and youth camps.

      I’ve been a leader of almost 30 years of children and youth camps and met so many parents, relatives and sibblings (yes, most names are in fact me, incl Maria 😉 ) have been to local, national and international stuttering and disability events and have been a member of so many chat groups, the stories are so many and so life changing. But so many of these stories remain untold, which is why I’m so happy to be on this ISAD online conference team, trying to get more people to tell their stories, incl children, parents, sibblings, teachers, SLPs, employers, friends etc. SLPs are the experts on treatment, but we who stutter are the experts on our own stuttering and have experiences that are so important to share.

      Please read my reply to Logan Faith just above this post. And I hope you’ve read Jurjen’s paper (http://isad.isastutter.org/isad-2018/papers-presented-by/stories-and-experiences-with-stuttering-by-pws/experience-of-a-pws-heaven-where-everybody-stutters-jurjen-de-jong/) where he describes the impact of meeting others who stutter, telling their stories. I’m so proud of them, now starting an international stuttering project of their own! And of the young woman who went from a youth meeting to becoming the mayor. And of the others who quit their jobs and studies after sharing our stories, to finally go for the study and job of their dreams!

      Unfortunately, the media is working against us. They love the quick fix, the happy endings, but they also add to the myths about PWS and stuttering. So it’s up to us to speak our mind and tell our stories, coming directly from the experienced source: us!

      I’ve been on every local and national media (tv, radio, newspapers, magazins) and use every way to raise awareness. F ex when they ask for a song on the radio I ask for “I’m the greatest, dedicated to children who stutter”. That makes them want to know more. What I feel should be told (but that’s my personal view and might not be shared with all) is that stuttering is tough, but not the end of the world. That we don’t want to be pitied (I feel so sorry for you because you stutter) and not want to be ignored (what’s your problem, as stuttering is nothing to be bothered about), but that we’re in between. That we can talk, we can breath, we know what we want to say, yes we have seen that show on tv and no it’s not helping, so if you want to help, ask us, as we’re all different. And that we’re freaking amazing, as we face tough challenges every moment of the day, but still keep on going. And who says we need to be cured and that stuttering isn’t a cool thing? People tought blue hair was stupid, that the world was flat and internet soon would be over with. But it’s the odd people (Lady Gaga, Columbus etc) who changed the world.

      My buttons, of which “Sure I stutter, what are you good at” is my invention 🙂 have helped me and my listener to relativate stuttering and open up a conversation, showing them it’s ok to talk about stuttering.

      Well, I need to get off my soap box, as raising awareness is my goal in life, as spending 27 years thinking I was the only one nearly killed me, so I can talk about this for hours, sharing stories about people (especially young pws, who are my pride and joy), but come to the world congress in Iceland next year and you’ll learn more. 😉 And I’d love to come your way and give a presentation, in person or online.

      Keep talking, as the ISAD is every day!

  12. I loved this! All the different stories and view made the message come together! Thank you so much for sharing, I really enjoyed your perspective.

    • Thanks so much for your kind reply, Emily. Together we can raise our voices so that people listen!

      Keep talking, as the ISAD is every day.