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Our Shared Burden?
Vinnie De Craim, a PWS (Person who Stammers) from Belgium shares his experiences interacting with the PWS community in India. Read on…
It's Okay to Stammer!
The first step is accepting upfront that I am facing a problem, that I stammer – no less, no more. Discovering that you alone can help yourself – but by helping others: this is the second step. Third step is going to the heart of the stammering riddle: Communication!
Like everyone else under the sun, we the stammerers, also have to practice and hone our communication skills. What better place to practice it, than in the company of one another? Yes, self-help groups, physical and virtual, constitute a major evolutionary strategy in our search for healing, wholeness and inner acceptance.
And now comes the final and the longest bungee jump, for those who have stumbled their way to the “cliff”: If I am not my stammering, nor my fluency, then who am I? to what purpose was I given this life experience?
We do not offer answers. We only walk with you- in solidarity. Your quest is ours too. And believe us, it is a long journey- but fun, when undertaken with like-minded people.
TISA is an association of Indian people who stammer (IPWS). Its purpose is to collect and disseminate relevant, correct and unbiased information for people who stammer and their families, friends and society. It is a self help movement, where PWS learn to help each other and themselves in the ancient Indian spirit: “This Self is to be achieved through self-effort!” Further, the reason for TISA to exist is to redefine the moment of “stammering”, its meaning and reclaim words like stammerer (hakla). We want to change the rules of the game itself – nothing less.
Not by “thinking” or “knowing”! Please browse around; Check “If You Stammer” page above; You may register and leave behind a post on our blog. Share about yourself and your journey. Feel free to join a self help group in your area – OR start a new one. Here is a broader list. Fire off an email to email@example.com. One of us will get in touch. Whatever! Just don’t give up! You have reached home – finally! If you want to “test waters” check out our online sessions below:
Google Hangouts, Skype Calls
Do you think, you have failed Interviews just because you stammer? You guess your boss knows about your stammering but you yourself have never talked about it in your office, have you? You have never told your colleagues about TISA? You have never displayed the memento or the group photo from the last NC at your office table?
Aha, no wonder, you feel uncomfortable in your office! And that affects your communication in the office where you spend 8+ hours everyday. On the other hand, what can a company or manager do, to get the best out of her/his team members, who may happen to stammer besides being excellent SEO experts? Because productivity is a team effort, is it not? To learn more about this aspect of our work life, read on these links from our own Abhinav (Banglore SHG). (link 1)
We have had a funny love-hate relationships with Movies! With King’s Speech, a change is coming over the society. In India, some good movies have been made on stammering. This movie by Ranjith Shankar (inspired by our own Sudhi from Bangalore) will easily win Oscars from us in TISA. (Review, more). Let us know if you found a movie which portrays stammering and other diversities in a creative and positive way.
“Indu Sarkar” portrays stammering realisticaly and positiviely by design: they did not use it for laughter. See the team explaining this here: https://youtu.be/NRjkjhGDRJs?t=211
Review of Kaabil by Anurag Mishra
(From Prakhar Sachan, 2006)
What if I wasn’t a stutterer?
This question, and other like questions, time and time again seem to surface to the fore of a stutterers’ mind. I have been no exception.
I started stuttering as a child. With no family history of stuttering, it was hard for everyone to relate to my stuttering. Stating the obvious, a search for “cure” proved to be futile. Somehow stuttering wasn’t an issue in my early school days. I used to stutter mildly and contextually (as far as I can remember), and stuttering still hadn’t seeped into my psyche. As such, the typical stuttering mindset and the emotional baggage that goes along with it were non-existent. But, it all seemed to change when I was in middle school. I was made to feel different, because I didn’t speak in the normal way. As an instance, my peers found it intriguing and sometimes amusing, why I took so long to say my name. I could very well have been labeled retarded, but as I did well academically, they were always confused and questions such as “why do you speak that way?” became common place. By the time I was in high school, my stuttering became severe. Really bad. I couldn’t even answer the roll calls (my name included), forget about participating in plays and elocution periods which were compulsory; as they said it was essential for personality development.
Is stammering a “speech” disorder, a diversity (different manner of talking) or oppression – 99% telling the 1% how to speak? This is a very interesting debate, which has intensified in recent years, as more and more pws with a background in SOCIAL sciences have joined the discussion. Earlier, the scene was dominated by SLPs and the discussion was limited to techniques, relapse and research methodology alone.
If we recall our childhood, many of us will remember that we personally had no problem with our manner of talking. It was others who kept on reminding that something is wrong and “YOU” have to do something about it. They had no clue that they too had a role to play as listeners. Many of us were literally bullied into therapy – if the family could afford it.
It was like a child from a village, who was being manipulated or forced to learn English, so that s/he will have a “Bright future”! This points to the politics of stammering and therapy. This was captured well in these lines in a review recently: ” there is a psychological cost in striving for normalcy, and that SLPs are often complicit in creating the desire to be normal within stutterers…”
If you are interested in exploring this dimension of your life, please check these resources. Let me warn you at the outset: the ideas are RADICAL and presume that you have some grounding in social sciences. Give it a try – you have nothing to lose- except shame, fear and guilt.
Articles which analyse assumptions behind speech therapy ( I have quoted from, above)..
An interesting discussion: Is it possible to have speech therapy that doesn’t also teach there is something wrong with your voice that needs to be fixed?
Happy reading and exploring!
Are you a Woman?
Indian Women Who Stammer (or IWWS) is the women wing of TISA. IWWS is a group of very different women, with totally different journeys regarding their own speech and in every meeting, whether online or offline, there is one common goal, to empower women on their individual journeys and become their steady companion. We have fun too and ladies are also encouraged to share their other interests, so we get to know each other as a whole person. Read More…
Let’s go home, then. If you stammer, like us, your life must have been a SEARCH. An unending journey, looking for something, someone, which will make you whole. Some treatment, some course, some belief. But who can give us that feeling, that vision, that we are OK – not a defective piece on a conveyor belt? Like Kasturi Deer, we have to return to source one day, trailing the scent, emanating from our own soul. This part of journey can be called HOME coming. We welcome you home!
हकलाना – यानि अपना और दुसरो का हक़ लाना, उन्हें जागरूक बनाना, समाज की सोच और समझ को बदलना ! बहुत से लोग शायद इस परिभाषा से सहमत न होंगे मगर हमारे लिए यही सटीक अर्थ है हकलाने का | हमारे कई साथी हिंदी में भी निरंतर लिख रहे हैं | यह इतना मुश्किल नहीं .. अपने दिल की बात जरुर साझा करें, किसी भी जुबान में| हिंदी में और पढ़िए – यहाँ ! अपना हाथ जगन्नाथ, एक स्वयं सहायता पुस्तक, हिंदी में भी उपलब्ध है | एक्सेप्टेंस (acceptance) पर यह हिंदी पुस्तक काफी मददगार होगी |
हकलाहट कोई बाधा नहीं
शाम का वक्त हुआ और हम लोग एक नई रोचक गतिविधि के लिए बाहर निकल पड़े। हमें अनजान लोगों से बात करनी थी। हमें लोगों से होली के बारे में कुछ सवाल पूछने थे और अंत में हकलाहट के बारे में कुछ सामान्य सवाल पूछने थे। इस गतिविधि के लिए मेरे साथी अमित और हर्ष थे। हम बोर्ड आॅफिस चैराहा पर गए और अनजान लोगों से बातचीत की। हकलाहट के बारे में उनकी क्या मानसिकता है, इसके बारे में जाना। सभी का यही कहना था कि हकलाहट एक बीमारी है, जो बच्चों को बचपन में या कभी कभार जन्मजात भी हो सकती है। जो व्यक्ति इस पर हंसता है वह सबसे बड़ा मूर्ख है। … (आगे पढ़ें)
टीसा ने बदली मेरी तस्वीर…
वहाँ मुझे हकलाने से जुडी मानसिकता और उसके फलसफे के बारे मे पता चला और हकलाने से जुड़े तमाम तरह के भ्रम और सवालो के जवाब मिले और मेरा हकलाने को लेकर नजरिया बिल्कुल बदल गया और फिर मेरे जीवन मे एक नया आयाम आया और मेरा व्यक्तित्व पूरी तरह से रूपांतरित हुआ।। (आगे पढ़ें)
जहां हकलाने पर मिलती हैं तालियां…
हमें अपनी सोच को बड़ा बनाना चाहिए और बड़े बदलाव के लिए कार्य करते रहें। हकलाहट से बाहर निकलकर जिन्दगी के अन्य पहलुओं जैसे- नौकरी, विवाह, रिश्ते-नाते, सामाजिक मेलमिलाप आदि क्षेत्रों पर अब अपना ध्यान देने की जरूरत है, तभी हम जीवन का सच्च आनंद उठा पाएंगे।।(आगे पढ़ें)
Yes, if it is coming from a place of acceptance, strength and celebration. Can you laugh at your own blocks? Can you laugh at funny situations caused by stammering in YOUR life? Then, you can rapidly move on and become a good communicator and a genuine & social person!
HOW TO JOIN
No formalities. Just start by participating in our events, our SHGs. Your stammering is your Platinum member card. Dont hesitate to show it. Write a post about it. Put up a youtube video about what you think about stammering (not what you were told!)- and share the link with us. This is how you volunteer – by participating! You are welcome to start a self help group, near your home, where you work or online. If you have other ideas let us know. But self help group is a good place to learn about TISA, and yourself – and also how you can help other pws and this movement. Read on..
I sometime hold my breath- and then, explode! How do I know when I am going to hold my breath? Many pws have asked such questions. Breath awareness is a special skill. It requires turning attention inwards; being alert and relaxed at the same time. It needs some practice and some instruction. A ten day Vipassana course is highly recommended. It is free. Its usefulness goes FAAAAR beyond stammering and communication. If you have tried all kinds of therapy and Intensive programs and have not benefited in the long run- it is time to check this “systems” approach to personal change and a lot more. Here are some testimonies to prepare you and inspire you: From Tanveer, Pramendra Bundela, Dr Mansi. Get back after the course and share your insights with us.
HOW DO WE WORK
We sensitise and orient people who stammer through free Communication workshops, online interactions and self help group sessions. Get-togethers and National conferences help you build social network, friendships and support groups. We do not offer “Therapy”. We offer friendship instead! We believe that LIFE can be lived fully, before “cure” (if there was one!); that sincere communication is more important than “fluency” in the long run. Finally, we believe that stammerers can be served better, if stammering was seen as a diversity rather than a disorder!
Have you ever helped a stranger? Did you remember the nice feeling? Yes, ages of pain, sadness, feelings of not being “good enough” – all this can be blasted away with just one gelatin stick: going out of your way and helping someone who may never be able to pay back. A stranger. You don’t have to give them Tazmahal – just a little help: tell them the address they are looking for, a glass of water or tea, offer them a seat, carry their grocery bag, teach a child Maths/ English, help with home-work, give away your old clothes, offer a meal to a poor man- anything. The royal toad to RECOVERY! Try it today. Read more
हकलाहट के नए आयाम
तीसा द्वारा आयोजित कार्यशालाओं और राष्टीय सम्मेलनों में शमिल होकर मैंने हकलाहट के संबंध में बिल्कुल नए तरह के दृष्टिकोण को विकसित होते हुए पाया। मैं यह दावा नहीं करता कि तीसा में आकर मेरा हकलाना ठीक हो गया है या मैंने धाराप्रवाह बोलना सीख लिया है अथवा अब मेरी हकलाहट क्योर हो गई है। मैं जैसा पहले था, वैसा आज भी हूं। मेरे आसपास जैसा समाज पहले था, वैसा आज भी है। फिर ऐसा कुछ नया मेरे साथ घटित हुआ कि अब मुझे हकलाना सहज, सरल लगने लगा।। और पढ़िए..
हकलाहट का सामना कैसे करें?
अधिकतर समय हकलाने वाले व्यक्ति इसी चिन्ता में रहता है कि पता नहीं, मेरे हकलाने पर लोगों की प्रतिक्रिया क्या होगी? अथवा जब वह हकलाएगा तो लोग क्या कहेंगे? हकलाने वाला व्यक्ति दूसरों के बारे में बार-बार सोचकर खुद परेशान होता रहता है। सच तो यह है कि दूसरे लोग इस बात में अधिक रूचि लेते हैं कि आप क्या बोल रहे हैं, न कि हम कैसे बोल रहे हैं। लोग सहायता की भावना रखते हुए हमारी बातों को सुनने की कोशिश करते हैं। हालांकि बच्चों के मामले में ऐसा नहीं हो पाता। कुछ नाममात्र के लोग ही हकलाहट पर हंसते हैं। उन्हें हंसने दें। आप भी उनके साथ हंसें या उनके उपहास का खुद मजाक उड़ाएं। जो लोग आपकी हकलाहट के प्रति गंभीरता और सहजता प्रदर्शित करते हैं, तो उनसे बात करें, चाहे आप हकला रहे हों तब भी। हकलाहट को छिपाएं मत।. और पढ़िए
I have been watching with some interest, a new pws who has been organizing Google hangout frequently with great energy. Couple of times, I I bobbed in and out of these hangouts. He was conducting these hangouts in a very organized way- giving everyone plenty of time, without turning it in a personal monologue. He was also practicing and teaching others some solid basic techniques for better communication. I decided to interview this “secret superstar” volunteer of TISA. He is Bhupendra from Ujjain. Here is his life story as told to me:
I am Bhupendra Singh Rathore – from Nagda, Ujjain (Madhya Pradesh). I am pursuing my B Tech. in Textile Technology from M.L.V. Textile and Engineering College, Bhilwara. Currently I am in Final year. We are five members in my family. My father and brother work for Aditya Birla group, in Grasim industries pvt. Ltd. while my mother is housewife. My sister got married in Jaipur. My hobbies are travelling, writing poems, listening music, playing badminton and table tennis.
I suffered a lot in my life due to Stammering as any so many PWS suffer; simply I never lived my life – it seems. I always thought what others will think about me if I stammer, and that one constant concern ruined my life for about 21 years ( I am 21). I can’t eat what I want to eat, nor can I travel to places I want to travel – all because of that one worry, one obsession.
Lowest moment in my life came when, my teacher called me to speak in front of 150 students on violence vs. non violence in our Engineering College. Not a single word came out of my mouth for about 15 minutes! Possessed by great fear and shame, I ran away from the stage and came to my room and cried for about 5 hrs and then phoned my father: “I don’t want to continue my studies; No way…” But my father anyhow encouraged me: “Don’t worry. Everything is going to be fine one day, my son.”
Then, my search for healing and wholeness, brought me in touch with TISA. I understood, that only self help group meetings and courage can help a stammer in the long run. I began taking risks daily to learn something new, do something new. Life began changing around- slowly but certainly.
Actually, I came in contact with Tisa in the 1st year of my college. But I left it at that time because I was too young to understand the concept of acceptance and self-help ☹. But Fate wanted to give me one more chance – fortunately. After the incidence I mentioned above – when I felt very low and lonely, I travelled to Delhi and Ahmadabad, for a 2 month internship. I grabbed this opportunity and attended a self-help group meeting in Delhi, and met Dixit sir, Abhay sir and Vishal Gupta sir; One discussion on acceptance in that meeting, really forced me to think about my own attitude towards stammering. I felt that I needed to change how I looked at my stammering.
Then, another BIG thing happened: I met Vipul bhai in Ahmadabad, who counseled me whenever I felt low and confused. I attended 4 SHG meetings in Ahmadabad. I still was often struggling and felt lost; At one such low point in my life, Vipul bhai asked me to take “initiative of helping others”. I began reaching out to others, to promote self-help, in Rajasthan and Madhya Pradesh – on phone, on hangouts. My life and my thoughts began changing slowly. So much so, today I wonder why was I so down and miserable?
We have done 7 hangouts meetings till date. And we are having many activities like group discussion, storytelling, tongue twister, poem reciting, jokes sharing etc. We also conduct some events every week to connect more pws with us – to offer them a social life, faith in themselves and the idea that life can be lived happily, even WITH stammering. Naturally, when we get together on hangouts etc. we encourage people to work on their communication skills, with or without “techniques” and have fun, above all.
As I have observed some people have improved a lot from 1st hangouts to 7th hangouts meet, and when they share that their life has begun to change after joining hangouts – I find it a truly high moment for me.
Yes, I do face problems with network connections, like many Indians (!). Sometime I just go to my friend’s rooms to conduct hangouts as internet connectivity is better in his area. Otherwise everything is coming along fine and I feel confident doing hangouts and other activities for TISA as a volunteer.
Looking back at my life, I think the three things, which have helped me a lot in turning my life around is: attending Regular SHG meetings; Taking risks in life and Taking initiatives. I could have waited for a magical therapist or a miracle program, to change my life. Perhaps the wait would have gone on for years. Instead, I said, even if self-help is rubbish let me check it out. And it works! Taking initiatives always works. I will never surrender my initiative to anyone however wise or well meaning they may be.
My future plans are: I want to continue these hangouts every week, to bring in some more hosts, and to start an in-person SHG in Southern Rajasthan. Because, face to face interactions also have a big role. And if we don’t go to remote areas in Rajasthan, who will?
Editor: wasn’t that inspiring? Wow! Well done Bhupendra! You are inspirational!
It’s been 1 month since I joined TISA. Initially the whole idea of acceptance was really strange to me. Earlier I was always tried to hide my stammering and was extremely stressed out whenever I Stuttered in a meeting or in front of people. But few days back during a hangout with you I learn to accept it. You told me Stuttering is just like anything and no need to hide. Today there was a meeting with my boss and consultant and I Stuttered but I was not stressed about that. Today unlike after any other meeting I am happy and not stressed. I am normal. Earlier I used to get depressed after any meeting. Today I am happy and enjoy … (Bhaskar, MOOC)
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