|About the author: Anita Scharis Blom, born and raised in the Netherlands, is living in Sweden. She works as an operation manager for the Workers’ Educational Association. She is chairperson of the local stuttering chapter, 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 is a national and international speaker on stuttering and has her own stuttering consultant company. She is 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?”
After having struggled with my stutter for many years, denying myself, trying to be what other people wanted me to be, being bullied to the point I tried to commit suicide, my life changed as I finally found the stuttering world at the age of 27. (Do check out previous ISAD conferences where I tell my story at www.stutteringhomepage.com)
At that time, the “only” way of communicating with other people who stutter (PWS) was through “snail mail” and meetings (oh no, absolutely not by using that #%*! phone…), later on through email, discussion- and chat groups. Nowadays social media is a treasure chest of groups and people to share your stories with and Skype, Google Hangouts and similar make it even easier to get in contact with PWS and even therapists from all over the world. You can chat with people your age about the things you have in common, but also encourage youngsters to follow their dreams and learn from older ones who been-there-done-that. You can discuss therapies with speech language pathologists (SLP), advise parents on how to help their child who stutters and even invite friends, family and teachers to learn more about stuttering.
All these groups helped me to get back on my feet again. I can share my tears of struggle and my victories in speaking situations. They give me advice on how to tackle situations, give me explanations on why things (situations, people, stuttering etc) occur the way they do, comfort me when I feel down, pull me up and push me back on track, and pat me on the back when I’m on top, of the world.
After being on so many groups for many years I notice a pattern I’m not sure I understand. I recognize three groups of people (generalizing, I know.). There are people who feel life with a stutter is as bad as it gets or even worse. Their input to the groups is a cry for help. The second group still stutters, but are having the time of their lives, feeling great about themselves, even though life gives them lemons. The third group is the people who have reached fluency and want to share their joy with others. And sometimes these three groups don’t really get along…
Those who feel really bad about themselves and their lives are not always helped by those who tell them to get a grip, or by those who think the way they became fluent is the perfect (and sometimes even “only”) way to get rid of stuttering. Those who have happy stories and make jokes about stuttering are not always happy with those who directly add something negative, or by those who think you cannot lead a happy life and still stutter and tell you that you MUST try this course or that technique as that has helped them. While those who found “the cure” are put down by those who tried it (or don’t want/dare to try because of risk of “failure” and feeling even worse afterwards) and by those who think “chasing the fluency god” is only a way of trying to hide and increasing the fear of stuttering.
So why do we feel the need to change others, or even ourselves? We already have to deal with (still) way too many fluent people who don’t get it. Those who tell us how to “cure” stuttering. Those who tell us stuttering is not a problem and to stop nagging. Those who tell us how wonderful life is and how wonderful we are tralala. And although we may not always like them, deep down inside we know they mean well. But after being diagnosed last year with chronic illnesses such as fibromyalgia and ME/cfs, I started looking how they deal with people who “know” all the answers, who tell them how to deal with the illness, that it’s between their ears and to enjoy not having to work (Oh my, if other people could walk a mile in our shoes for one day…). I also learned a lot from doing political work together with other disability organizations during many years, learning about their matters of the heart, their typical situations and the people they meet.
Those with disabilities who have been acknowledged the longest, have come far. They seize the day when they feel happy and do the things they themselves like and know they can do. They lock the door when they have a bad day, tugging themselves in a cozy blanket, phone off the hook, while recovering, waiting for the dark clouds to disappear, so that they can take a new deep breath and try again. And they laugh at, turn their backs to, or with loads of self-respect explain to, people who know how to “cure” them, what it’s like to have that disability or illness. They claim their right to simply be as they are and get respect. How often do people in a wheelchair get to hear they should get up and start walking? To not be afraid, take a pill or try that therapy that claims a 100% cure, so that people who can walk don’t need to feel embarrassed? So what makes us think we are not allowed to stutter, but instead feel the need to please the listener?
Back to those three groups.
I love talking and am no longer bothered by my stutter. I stutter freely, wear my different stuttering buttons to make people understand I’m not having a fit when I’m in a block and show them it’s ok to talk about stuttering. I make jokes on stuttering, have been on national and local tv, radio and in most of the national and local magazines, at least once a year. From being suicidal, I now travel the world being a keynote speaker, organize children and youth camps helping children and young people to feel good about themselves, am involved in all levels of stuttering associations, speak to local, national and international politicians and have had jobs I would never have thought I would get, simply because they, and I, believe in me. I’m proud of who I am despite my stutter and proud of what I do thanks to my stutter. And when I love my life, I want to share it with people, hoping they will share my joy.
But other days I hate my stutter. I hate not being able to speak freely at a table with people who have the gift of the gab, especially when there’s a lot of background noise. I hate it when I make a funny reply, and people didn’t hear it, as I know that I will stutter like crazy when they ask me to repeat it. I hate the phone, as I cannot see the reaction of the person on the other end. I hate when my stutter gets worse with intimidating people. I hate it when I can be totally fluent on stage, or even when recording a video, while the next moment I can stutter on every word. And when I hate my stutter like that, I want to share my nagging with others, hoping they will acknowledge my problems and tell me stuttering sucks.
I tried so many different therapies and other things that might be helpful. From therapies and technical aids, to certain stones and food. Today I know what helps me and what not to do to get more fluency. And, I want to share my knowledge with other people, hoping for them to try it too and sharing with me what has helped them.
What I’m trying to say is: although we are in one group, tomorrow we can be in the next, next week in the third. Let’s try to not want to change people, but simply acknowledge where they are at that moment and give the support they need, right then and there.
So to all people, PWS as well as fluent people: when we’re happy with life including stuttering, let us sing a tralala and don’t tell us tomorrow it will all go down the drain, as we know that. We just want to seize the day. If we’re nagging about how people once again laughed at us, finished our sentences or misjudge us, let us nag, as we know the sun will come out tomorrow, but today is a shitty day. And if you have the perfect cure, do tell us, but do not make us feel like lost souls, if we don’t try and buy it. Just give us that “Wow, so happy for you”, “Darn, what a shitty moment” and “Interesting, do tell us more”. As that’s the best hug we could even get.
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