Can Running a Self Help Group for Pws, Help in the Long Term Recovery?

About the presenter Manimaran writes, "I am an Indian male, 52 and a Superintending Engineer working in a state government organisation of Tamilnadu, a southern state of India. I started self help group in Chennai in 2001 at Marina Beach. No longer bothered about stammering, especially after joining TISA (The Indian Stammering Association)! I believe self acceptance is the key and the first step towards developing better attitude towards everything of value in life, including Communication."

About the presenter Jai Prakash Sunda is 25 years old and presently working as a software engineer with Infosys, Pune, India. He shares, "I have been stammering since the age of 8 or 9. Ignorance about stammering in the adults around me, made my life a living hell every day! The real change started for me when I took over the reins of an inactive self help group in Pune at the age of 23 and then took a six month sabbatical from Infosys, to work for people who stammer (including me). Very recently I started the first self help group for PWS in Infosys, a first of its kind initiative in any corporation in India. I love exploring new places, playing basket ball and cricket and doing anything new or trying out any new sport."

Can running a Self Help Group for PWS, help in the long term recovery?

by Manimaran and Jai Prakash Sunda
from India

Can running a Self Help Group for PWS, help in the long term recovery? We at TISA tend to think so and offer our two case studies to explore this dimension of self help, in contrast to formal therapy.

Part one : Mr Manimaran

I am one of the five children born to my parents in Tamil Nadu, a southern state of India. I am a stutterer from my childhood. In fact my father also stuttered, but mildly. He was able to manage speaking fluently without blocking on words.

Education

I joined Pre-University in Madras Christian College in 1973, where I started experiencing embarrassment for the first time. Because of stuttering, I became afraid of asking questions from lecturers. This was not the case during my school years. Later, I got admission in a reputed Engineering college, now called NIT, at Tiruchirappalli, Tamilnadu. Whenever I went for outing, my friends did the talking on my behalf like buying bus tickets for me, ordering food at restaurants etc. I

My first therapy

In 1970s specialized treatment for any disorder was very limited. After completing PUC at 15, I met a speech therapist at the government hospital who was giving speech therapy at that time to about 10 children from 6 Yrs to 10 Yrs. The speech therapist taught me prolongation of first syllable of words and to speak slowly. I hated this mechanical way of speech.

My marriage

I got married in 1983 and my wife is a pharmacist working in a Government hospital at Chennai. Before marriage, my father hid my stuttering from the in-laws for obvious reasons. In those days, the marriages were arranged by elders and in most of the cases the bride and bridegroom met only at the marriage. My wife discovered my stuttering within a day but never asked about it. In fact she inquired about my stuttering only couple of times in last 26 years!

My second attempt

After the first unsuccessful attempt at therapy, I tried it again in 1998 because I was getting promoted to the management level shortly where I had to do a lot of talking. This time I went to a therapist in Chennai. Like the previous therapy, he taught me the same prolongation of the first syllable and slow reading. I spoke really well in the clinical condition, but as soon as I came out I started stuttering!

My third attempt

One day in the year 2001, I went to a saloon for my hair cutting. While waiting for my turn, I browsed a Tamil weekly (I read the weekly rarely) and read a small article on stuttering written by an Engineer who overcame his stuttering by attending a course in Scotland and who was conducting similar courses once in a year in Tamil Nadu for a small fee. This was an intensive speech therapy course, almost non-stop from 9 AM to 9 PM. He taught prolongation and slow speaking techniques. We had to speak in this mode of speech even to the waiters and ward boys. This was to change our speaking behavior. I did this exercise seriously for 6 months and began talking really well. I also gave a lecture in the training center for 10 minutes. Everyone present was really happy about my speech. I would rate this therapy as the best one among I have attended so far.

My First Self Help Group

After my third attempt at speech therapy, I started a self help group at Chennai at Marina beach in 2001. The self help group started with 3 PWS only. After some time, attendence increased to 6 PWS. We moved like a family, helping each other. I attended one PWS's sister's marriage and one PWS's marriage! Slowly everyone moved out of Chennai by 2004 due to various reasons and our Sunday meetings became rare. I slipped back to old stuttering!

Learning about stuttering through Internet

I joined a yahoo group (IPWS) in the early 2008 and started posting. Meanwhile, I started SHG again at Chennai at the same Marina beach with about eight PWS. Mr.Vishal Dadha, Mr.Hassanand and Mr. Sivasubramanian helped me tremendously in this noble venture. About this time, I came to know TISA through yahoo group. After discussing with the SHG, we decided to launch Chennai chapter of TISA on 24th January 2009. We began meeting at the YWCA International guest house at Chennai and continue to do so today.

Change of mindset towards stuttering

During a private conversation with Sachin on that inaugural day, I asked him that though I wanted to help stutterers, I was still stuttering! So, how could they accept me as their coordinator? He asked one question which I least expected: Do you accept your stuttering or hate it? I replied that I completely hated it and was even ashamed of using the very word "Stutter". He smiled and said: Why not accept it and love it and see the results for yourself? I felt as if a spark lit up my mind; Subsequently, "acceptance" became one of the central themes of TISA SHGs.

My recovery after becoming Coordinator

After I started accepting my stuttering, I was able to analyze my stuttering better than before. I started asking questions like why I was able to speak well in certain condition and not in other conditions. I feel that though stuttering is mostly psychological in nature, a small neurological problem also plays vital role. Coming to my improvement, after an year of conducting SHG sessions in Chennai, surprisingly I overcame almost 95% of stuttering. I feel this is due to (1) Acceptance of my stuttering whole heartedly thus reducing my fear and shame (2) Elimination of my secondary symptoms (3) Gaining more confidence after conducting SHG sessions for more than a year and (4) broader outlook towards the world after learning so many lessons in life. Even if I stutter occasionally, I am not at all bothered about it now and do not have any inner conflicts.

My insights into stuttering

Some PWS expect new lessons, new techniques to be taught in every class! I firmly believe in basics. For us the first ground rule is "Acceptance" of who we are, not what we would like to be in the eyes of the world. One of the ways of practicing acceptance was to talk and write about stammering. Running a SHG, writing to a blog etc. gave me plenty of these opportunities. What "therapy" had failed to do for me, happened easily and spontaneously, as I went about trying to help other PWS! Cast your bread upon the waters and it will return

So, am I recommending that everyone starts SHG instead of going for formal therapy? NO! You should go for therapy if it helps you, if you can afford it, access it. If not, why not run a SHG? It is free and fun. Lot of hard work too - but rewarding in the long run!

Part Two: Jai Prakash Sunda

Early life

I was born in a village in Haryana, a state in northern India. I remember that I started stammering after typhoid when I was around 8 years old. For a long time I used to believe that I started stammering due to typhoid but after reading about stammering on Internet, I am not sure whether it was a trigger or a root cause. As I was the first child of my parents and first grandchild in the family, people had a lot of expectations from me and which sometimes I believe was the reason for my father being always unhappy about the way I was and his being over critical about everything that I did, how I ate my meals, how I walked, played, talked - I mean everything.

Education

During Primary school it didn't affect me at all. I was house prefect for my house for primary section in school and used to participate in all (yes all!) the competitions. But then after a change of school, the problem really aggravated. It was because of the new environment, no friends and new language...I remember slowly how I started avoiding a lot of situations: I never had the courage to go to our living room if we had guests. I was always busy with my studies whenever my family had to go to any parties or community lunches :-). Slowly I started anticipating 'problems' and was always afraid whenever I saw any guest in my class thinking that I may be asked to speak. I remember a few incidents where my teachers called me shy and girlish..

Therapy

My first attempt at speech therapy was when I was 18. I went to this speech therapist in Chandigarh, who wanted me to control my emotions and speak like a fluent robot. As it happens with every new attempt (read placebo affect), I was doing good for the next one year but still couldn't gather courage to attempt the interview for fighter pilot with Indian Air Force. .

College years

When I started college, the first semester I was good and was quite sincere but I flunked in an exam (for the first time in my life) and then started the downfall. I started feeling down and it affected my confidence and speech and then I started bunking classes for the fear of answering roll calls and a time came when I almost stopped going to college. I don't know but after a few vivas this idea came to my head that if I can't speak then there is no point in preparing for the exams. I remember, a lot of teachers and students used to take me for a dumb person.

Employment

So when I got a job with Infosys, a lot of people were surprised! My parents were also very happy. But my happiness ended very soon. I had to interact with people on daily basis. A lot of introductions too! And I gave up again and pretended as if I was not interested in the job while from inside I was quite scared that if I lose this job, I wouldn't be able to get a new one. This fear forced me to go to another speech therapist in Pune. As he was quite unprofessional and was only interested in the money, I stopped going to him after 3 sessions even though I paid him for 8. I was again on my own!

Seeking self-help

I learned a good thing from my first speech therapy that all I need is a group of people who stammer and understand me. And this group can provide me an environment where I can play around with my speech, practice my speech goals and techniques. So I started my hunt for a self help group in Pune and found one but alas, as the fate would have it, the group members never replied to my mails and calls. Then I mailed Dr. Satyendra Srivastava (Trustee, The Indian Stammering Association) and he suggested that I should start my own group. The idea seemed quite absurd as I thought that group should be started and facilitated by someone who has overcome his stammering. But as I had no choice then, after gathering a lot of courage I posted an advertisement on my company's bulletin board that I want to set up a self help group in Pune and if someone is interested, they can join me. I also emailed to few of the people who stammer whom I already knew. But to my surprise they all responded in negative!

Insights

After regularly posting the advertisement for a month, I got an email from a colleague who said he was interested. Actually unknowingly I had already started laying the foundation for a long term recovery. Posting an advertisement about stammering with my NAME really helped me a lot. It eased the tension which was there around me all the time. From now on, I would never have to hide my stammer as I already had told people about it! The self help group provided me an opportunity that I would not have gotten anywhere else - To mobilize a set of people and become a leader. It taught me a lot of lessons e.g. how to deal with people and media; it challenged my creativity as to how I could keep the meeting interesting week after week. I would say starting the self help group helped me develop overall as a positive, 'whole' and caring human being. It took my confidence to a new level where I could try out things which seemed impossible few months ago.

I got myself a six month sabbatical to work for people who stammer, even though I was not eligible for it. I arranged a two day workshop for people who stammer inside company premises- a big achievement in the prevailing corporate environment. And here I am today, coordinating two self help groups in Pune, both having more than 25 members, one of which is the first corporate self help group in India. As I see, running a self help group made me take responsibility for my life and stop running around looking for a cure - a very basic criteria for long term recovery.

I am still learning a lot, making a lot of mistakes and evolving as a person, thanks to the self help group! I would like to end with the following quote which summarizes one of the very important learning for me-

"One of the greatest moments in anybody's developing experience is when he no longer tries to hide from himself but determines to get acquainted with himself as he really is." Norman Vincent Peale (1898-1993)

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You can locate the TISA website at http://stammer.in and the TISA Blog at http://t-tisa.blogspot.com. For additional information, contact Jai Prokash Sunda at jaiprakashsunda@gmail.com