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Ssssachin—that’s how Satyendra Srivastava, a community health consultant based in Herbertpur (near Dehradun), signs his emails, with a good-humoured dig at his own nickname. He is also coordinator-at-large of The Indian Stammering Association (Tisa) and founder-trustee of the Indian Stammering Association (ISA). Established in April 2008, Tisa, a self-help organization for people who stammer (PWS) has helped—in person (through local workshops and self-help groups), over the telephone, email and Skype, through school visits—around 500 individuals across the country since then, according to Dr Srivastava. It is just the tip of a rather large iceberg of an issue—a common metaphor among PWS. And it probably would not have come into being even as late as 2008 without the efforts of one particularly active PWS—UK-based Keith Boss, founder of ISA.

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Boss is now designated a special friend of Tisa, besides his other roles as trustee of the British Stammering Association (BSA), board director of ISA and chair of ISA Outreach (which seeks to establish contacts with people who stutter in countries that are not yet ISA members—including the encouragement of new local and national groups such as Tisa). This is how he describes himself: “I have two arms; two legs; I wear glasses; I have a stammer; I have had four replacement hips. I am 71 years young. I am registered disabled for my car, because of my reduced mobility. I have a disability with my speech, but I am not disabled because of my speech." For proof of his ability to counter the disability in his life, apart from all the work he does worldwide with PWS, Boss has also been a vice-president, education, of Anglia Communicators Speakers Club, an UK-based organization that seeks to help members hone their public speaking and leadership skills.

Boss is in India (his first visit to the country) this month for a series of conferences and informal interaction on self-help for and awareness about PWS, organized by Tisa (see below “Speak…and be Heard"). Edited excerpts from an email interview:

How big a problem is stammering, internationally and in India?

Stammering success: Guddu in Kaminey is self-conscious, but it doesn’t stop him from getting the girl.

Why do people stammer? Is it an inborn trait?

There is still no clear definitive answer. PWS do not automatically stammer all the time. There are a variety of situations where they may be fluent, unless in the very rare case there is a physical problem… There two types of stammerers: covert (people who can hide their stammer) and overt (people who cannot or do not hide their stammer).

Researchers have found one or two “stammering genes". However, our genes do not define us: 80% of children who stammer (CWS) change back to fluent speech in a small space of time. The (remaining) 20% will usually grow up to become adults with a stammer. Usually stammering (becomes apparent) when learning to speak.

But there are exceptions where stammering begins later in life. Some people in accidents or who suffer trauma to the head may begin stammering.

Can the environment play a role in how much of a problem stammering becomes?

The local environment may play a part. If a child has a tendency to stammer and the home environment is such that there is lots of activity—parents, siblings and relations talking a lot, maybe at high speed—then “getting his/her turn to speak" may be difficult, which will exacerbate the tendency. This is no reflection on the family. They would never deliberately set out to make the stammer worse and more ingrained. (But) family education would help.

When the child goes out into the world—a school—then human nature is against him/her. They are different. They stand out to their peers. They will try to hide the stammer and if they are able to, they will become covert. Being covert will end the peer problem during school, but begins to build up what is called by some a “hidden stammering iceberg". Being overt will invite teasing and/or bullying—this will also build the hidden stammering iceberg. If the child is overt, and good at some activity that inspires admiration, for example, sports, then the hidden iceberg may not start as the teasing/bullying will not happen.

While in school, a teacher’s classroom management will also play a part in reducing or increasing the hidden stammering iceberg. But again, no teacher would deliberately set out to make the stammer worse or more ingrained. (However, again) teacher education would help.

When the child leaves education and seeks a job, (adult) friends, girlfriend/boyfriend, the size of the accumulated iceberg will affect the success in employment and social life. With many PWS, their stammer is the centre of their universe. Everything, but everything, revolves around the stammer. This means there is a strong negative outlook, which reduces success.

During adulthood the attitude of a (PWS) will range between “every negative thing in their life is because of the stammer" to “intellectually wanting to stop stammering but in the mean time, get on with life". During adulthood, without help of some form, the majority of PWS will never achieve their full potential.

To what extent does stammering function as a speech disability?

PWS have mixed views on this. I think stammering is a disability...

An example is a tribunal set up to hear complaints or contrary views. Its regulations say that each person is allowed 7 minutes’ speaking time. A PWS starts talking and asks for longer time because of the stammer (it takes him 3 minutes to ask this). He is told no, there are 4 minutes left (this actually happened). He took this to arbitration. He was thanked and the rules for this tribunal and others like it in the UK have now been changed, to allow PWS more time.

Human beings are social animals. We are one of the species to make sounds to communicate and we are one of the species to use facial expressions and body language to communicate. If any of these ways to communicate is impaired, that automatically impairs the development of that child or person the rest of the time that impairment exists.

This was very common in the past: I was out with my wife, and we would talk to others or I would ask for something in a shop. Nine times out of 10, when I stammered, the other person after a second or two, would look at my wife for an explanation of either what I was saying or what I wanted to buy. I was often perceived as having poor or low mentality.

Stammering is a hurdle. When a child goes through education and grows up with poor or no communication skills, that child is severely disadvantaged the whole of their life. With discrimination, the child will have no education, a poor (or no) job and be a burden to the family and/or state. Equally employment can prove very hard. Many PWS, unless they have received help, will have poor body language and minimal eye contact. Job interviews with the poor body language (usual) of PWS are not likely to be successful.

(But) with help, the child will succeed as well as peers succeed. The British government has recognized (this) in the Bercow Report a 2008 government document recommending support for children and young people with speech, language and communication needs.

What situations and factors can worsen, and what can ameliorate, the problem of stammering?

We all have three major filters in our minds which delete, distort or generalize. Many PWS distort feedback based on the belief that everything revolves around the stammer. Being heard stammering is the worst possible thing for many PWS. So a covert always redoubles the effort not to stammer. An overt tries harder not to stammer. Both are expanding their “hidden stammering iceberg" (the pressure felt due to consciousness about the problem, which in turn can exacerbate the issue).

Situations that scare PWS and exacerbate the tendency to stammer will include speaking where other people will hear you; speaking where people are looking at you; speaking on the phone; speaking to an authority figure [for example, parent, adult (due to low self-esteem, an adult PWS is often still stuck in the role of speaking as a stammering child to a perhaps intimidating adult), policeman, bank clerk, etc. Some fluent speakers have the same fears).

Public speaking is in the top five most-feared things in the population. Situations that may reduce or even eliminate the stammer are when you are not using your usual speaking voice (your stammering voice). Examples of this for many PWS are when you are singing, alone or with others (choral); when you are alone reading, or not alone but reading with another (chorally); when you are praying out loud with others saying the same prayer; when you are on the stage acting the part of another person; when you are alone, talking to a baby or pet; when you whisper; when you project your voice and speak very loudly; sometimes with a spouse or close friend.

Are there therapies that can help people who stammer?

There are many different therapies. Some help some PWS. One of the problems with therapy is that there is not one clear, comprehensive definition of stammering. However, a few professionals…do consider a holistic approach to therapy and begin to address the hidden iceberg in the mind.

The therapies taught tend to change speech patterns by changing airflow while talking; using fluency shaping (bbbbounce into a word, sssllliiide into a word, start a sentence at the beginning of an exhale, and continue exhaling while talking); encouraging voluntary stammering to put PWS in control (rather than being controlled by the stammer). But…the words we speak are only 7% of communication.

The remainder, 55% body language and 38% tone, depends on what we are thinking. If we are anxious (social anxiety), our body language will display this and our tone will be higher. The more anxious, the higher it will be. Now, it is strongly suggested and can be demonstrated that what we are thinking changes our physiology (body language) and a change in our physiology changes what we think. So education here is very possible.

All of this therapy and additional training will work for a time, but then the PWS will revert to stammering unless the PWS takes permanent action to accept it is okay to let the stammer be seen and heard, potentially every time s/he talks. There must be no “cover up". A “cover up" begins to grow the iceberg. Ideally, when the stammer takes place, it is under control.

(Dr Srivastava of) Tisa runs workshops for PWS at Herbertpur. They are very comprehensive, and are free. When more funding is available, more can be run. I would like these to be run more regularly.

Is the treatment different for adults and children?

Yes. Small children have no “icebergs", so just need help to say the words without a stammer. Adults need to melt the iceberg as well as getting the words fluent. Adults can use (approaches such as) NLP (neuro-linguistic programming); children could not understand NLP.

Any self-help options?

Factors that affect stammering either way are usually based in the mind and the person’s standards, beliefs or goals. A covert mentality combined with a probable negativity will never help. It will always increase problems. An overt (stammerer) who has accepted that it is okay to let the stammer be seen and heard is taking a favourable path to improving. Meditation, or some other method, used to reduce stress, tension or anxiety will help to reduce a stammer.

The PWS is the only person who can help himself/herself. Certainly there are many sources of information; many therapists to give training and offer advice; fellow PWS or recovering PWS to offer advice. But the bottom line is “I am the only person who can help me.

So the adult PWS must go out and gain knowledge; must select speech tools which they are comfortable using in public; must accept it is OK to stammer, and when it happens move on; must go out and talk to people; begin melting the iceberg by replacing negative memories of speaking with positive memories of speaking; begin to change the internal image of being a child and start think I am adult/parent; start changing negative thought to positive thoughts; start to improve communication, day by day.

Some exercises that may help:

• Read out loud for 15-20 minutes a day.

• Try to slow down your speech and make pauses to allow for breathing.

•Practise deep (belly) breathing as much as possible, until it (becomes) your normal breathing pattern (and breathing deeply becomes the norm). Additional oxygen in the lungs and bloodstream helps our health in so many ways, and the deep breath in unlocks all muscles in the upper diaphragm.

• Observe what you do when speaking. If there are any secondary habits like foot tapping, try to stop them.

• Calm your mind when going to sleep and wake up in the morning, jump out of bed and count all your blessings; be thankful for the new day and new challenges to overcome.

• Start some form of meditation.

• Eat properly, exercise enough and sleep well.

• When you have started to melt the iceberg and have a degree of control, join a local speaking club, to help in both communication skills and leadership skills.

Can alternative (for example, written or electronic) means of communication help?

Most PWS who seek information will prefer written communication. Currently lots of us are exploring Skype, as talking to a machine is less hard. A number of us are in (online) support groups.

How important is social support or the help of a support group?

Often a PWS will look on a particular environment (say a clinic) as a ‘safe’ environment where there will be understanding and support and not puzzlement and ridicule. Social support or self-help groups (SHGs) working alongside speech and language therapists can help PWS to reduce their stammer.

How do the rest of us need to change in your attitude to people who stammer?

In the media (films, TV, plays), PWS were often written to be stupid, slow-witted, funny or criminal. Some video clips of people who stammer are in the funny/humorous sections of YouTube. Some PWS are now taking authors to task…

Of course, a percentage of us will be stupid or slow-witted, just as percentage of the whole population are. But many of us work in IT and have very capable, often underused brains.

(On the other hand) PWS have to be careful not to be too judgemental, because there are TV shows where the humorous character has a stammer. As long as the humour is not the stammer, but is the character, then we have to hold our thoughts and let it be.

What else can be done to help?

The lack of social support is apparent because of the lack of public awareness about stammering. But the lack of social support is understandable when there are finite funds to spread around all social needs. Many other social problems have higher priority, for obvious reasons. But the impact on India could be significant. 11.75 million people not achieving their full potential, a good proportion not getting a job, a proportion of them being social misfits; a proportion of children not getting education and ending up in the prison system.

There is a need for national associations like Tisa to spread the message that for a comparatively small cost, when children are learning to speak, they can be helped away from stammering into adulthood. This will give them a better lifestyle. The UK has shown that help at this stage increases the number from 80% of children (who leave the difficulties in learning to speak behind) to 99% of children. The “saved" costs to the state are high.

But in the UK and, I think, in India, only a very small percentage of that 1% are active with therapists, groups, SHGs (self-help groups) or the national association.

Tisa needs to spread stammering awareness around India to help those who stay hidden because of the stigma. Tisa wishes to create more SHGs…one in every city. Each SHG would be a place for all PWS to improve their communication and leadership skills. So much more could be done. But this needs funding.


Speak…and be heard

These are some support groups and organizations that work with people who stammer or stutter. Use them as a starting point to find help and also to build your confidence as you interact with other members who are living—and finding success—with the same issues you face.

The Indian Stammering Association, Tisa

The TISA blog

British Stammering Association

International Stuttering Association

Keith Boss’ self-help and awareness group includes 175 international members, and offers guidance to those wanting to set up their own self-help groups

Tisa is organizing a series of three conferences (in Delhi, Pune and Chennai) during Boss’ India visit. The remainder of his four-stop tour will be used in interacting with people who stammer, their friends and families, self-help and support groups, speech therapists and the like. His itinerary is as follows,:

Delhi, 11-15 February. Conference on approaches to self-therapy at the YWCA, 14 February, 9.30am onwards.

Pune, 15-18 February. Conference on self-help and motivation on 16-17 February. Venue and timings yet to be announced.

Chennai, 18-22 February. Conference on 20-21 February. Venue and timings to be announced.

Dehradun and Herbertpur, 22-25 February. Several events in both towns.

For further information, contact local Tisa coordinators:

Delhi: Nitin Tomer (09818350799, 09990099598)

Pune: Jai Prakash (08149106117)

Chennai: Mani Maran (09884289989)

Dehradun: Dr Sachin Srivastava (09412058272)

Bangalore: Amithap Sampath (09663591434)

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