About the author:  Dr Satyendra Srivastava is a community health consultant working with voluntary sector in Indian Himalayas. He is the founder and present coordinator of The Indian Stammering Association (TISA).satksri@gmail.com

Philosophical origins

This Self is to be achieved through self-effort.  (Gita; Ch 6, Verse 5)

This Self is not to be attained by the weak…  (Mundak Upanishad. III. ii. 4)

As a paper originating from India, it might be forgiven to begin on a philosophical note! In my early forties, I was suffering from “Loss of self”: Who am I? My stammering self? Or my fluent self?[1] And of course, there was a deeper question, inspired by Raman Maharishi: Who am I, beyond my speech?[2]

About this time I had a breakthrough, helped by the above thoughts from scriptures and other events – and a self-help movement began. Communicating with others on the same path became a “need” as well as a practical application of the above ideas: The stammerer must take responsibility and initiative for his own healing – and the “wholeness” he is searching for is all within; it is not something to be added from outside. He just needs to stop “interfering”. This initiative had to be put in our context, in line with our evolution over the last five millennia – selfless service to others puts us in touch with our larger Self[3], which is the basis of true and enduring healing and wholeness.

Practical Implications

“..Anything you accept fully will get you there, will take you into peace. This is the miracle of surrender..”  (Eckhart Tolle, The Power of Now: A Guide to Spiritual Enlightenment)

As this self help movement began, we emphasized the role of accepting the reality of this stuttering moment and from here, initiating a change, based on self-effort and self-responsibility. Acceptance sets one free from the inner loathing, resistance and struggle, and makes it possible to consider other alternatives and move forward. Instead of running away in abject fear, instead of outsourcing the whole task to an “expert” (and complain later!) we said: only I can change myself on a sustainable basis. No one else can do it for me.

We felt that search for and promise of fluency & cure, which plagues main stream therapy, in India at least, had totally eclipsed the central role of communication in the entire discourse. The sheer purpose of opening one’s mouth is to communicate something with someone. Ignoring this, many of us have gone on a meaningless trip of “clinical cure”. Fluency in isolation.

Beginning 2008, we tested and perfected a model of three day Communication workshop, based on centrality of the stammerer, his experiences and needs, principles of adult learning and de-medicalization of stammering – all, under an overall framework of self-help[4]. Participants of these workshops are encouraged to later attend (or initiate) Self-help group (SHG) meetings in their own town or workplace – and get back for a couple of more workshops, to clarify doubts and for some more practice. We stopped counting these workshops after twenty or so in 2012!

To help this process, we promoted a community blog and developed a self help manual, Apna Hath Jagannath[5]. The title is a Hindi proverb in praise of self-effort. We can not claim uniform success or large turnover. The reason is: India is a vast and complex country and the idea that stammering is a disease and some wise therapist can cure it, still survives. But whatever success we have had, has been significant and has helped to sustain TISA, a voluntary movement over the last seven years.

Challenges

We have had our fair share of challenges and criticism!  Some quarters have misunderstood our reluctance to promote this or that therapist, program or gadget on our blog and in our SHGs. We have steered clear of technical devices such as Speecheasy[6] and programs like McGuire[7]. Both cost over a lakh of Indian rupees (~1640 USD) – a huge amount for most of us! Whether these work in long term or don’t, is a separate issue, but the pricing itself shows deep insensitivity to local realities. Secondly, we felt that as a self help movement, we must not stray from our core theme: However little gain I make on my own, will be mine for ever and will add to my self-worth and confidence. If I relapse, I simply have to go back and repeat those steps.

Another genuine question has been: why is TISA not like the National Stuttering Association of America and other associations?! We think that every association is a manifestation of their national ideals and their particular way of conducting business. We continue to be totally staffed by volunteers with no brick and mortar office (other than our homes) and no balance sheets to worry about. We raise funds for specific activity internally and share the details on our website. We put necessary documentation on our public blog and website. None of us gets “compensated” for our time, for counseling, for conducting communication workshops, running self help groups, organizing conferences, managing blog and website or for bringing out a newsletter[8] etc. But yes, we must and we do learn from others – like Vipassana, Brahmavidya, Brahmakumaris, Toastmasters, StutterTalk etc., without losing our essence.

Voluntarism

Give till it hurts.  (Mother Teresa of Calcutta)

We think that the spirit of voluntarism is important enough to be kept alive, in a nation which gave the gift of Buddha’s message to half the globe, two millennia ago, without military conquest and without an army of salaried preachers. In fact, voluntarism itself has played a huge role in recovery for many of us: we stopped “daily one hour slow reading practice” and stepped out of our comfort zones, managed some crazy national “events”, connected with others over phone and internet, spoke in public for our beliefs, traveled around, conducted stuttering interviews in trains and shopping malls etc. All the soft skills which a Business school perhaps would have taught us for a suitable fee! But we try and discount these spin-off benefits in our discourse, because true voluntarism must be self-less, not constantly calculating the cost and benefit ratio.

Core content

If you don’t run your own life, somebody else will.  (John Atkinson)

Over the years, some research and some trial helped us to fine tune our core content. We promote, share, practice following core techniques or ideas:

1. Bouncing
2. Prolongation
3. Pausing
4. Voluntary stammering[9]
5. Good eye contact
6. Belly breathing (self/breath awareness)
7. Block corrections (as a way to practice above techniques during moments of difficulty – a simulation)
8. Gentle onsets (bringing awareness to speech organs)
9. Vocalization exercises (exploring pitch, volume etc.)
10. Expressive writing (diary or blog) & other creative expressions

All this, in an overarching framework of acceptance and communication. By acceptance we mean: I should be able to say “I am a doctor” or “I am a stammerer”, both with the same equanimity and ease. And communication skills- because, that is the REAL goal of speech and needs to be formally learned by everyone. No point in becoming fluent but unable to hold a meaningful conversation or make an effective presentation.

Then in addition, we encourage people to explore and benefit by those practices, which stand to common sense and are easily available in public domain for free or for a very small fee: Affirmations (EFT), Vipassana, Brahmavidya, Meditation, Pranayam, Kriya Yog, Art of Living, other religio-spiritual traditions or practices in India (plenty to suit everyone!), classical vocal music, acting, Toastmasters, Conversational English classes, Martial arts, Hath yoga etc.

Beyond all this and above all, we try to make TISA a home for those who have gone “beyond techniques”; who don’t want to practice any technique any more; who just want to be at peace with themselves. THIS is the most important function of TISA: offering genuine friendship to those who have had enough of therapy, and who want to focus now on other dimensions of life.

Steering between dogma and gullibility

An issue we have often faced: members join (it is open, there is no fee), without reading the core documents of TISA and then, want to promote X therapist, Y therapy or Z technique on our platform, just because they are convinced that this is what benefited them or someone they know, without discussing the question objectively.

Let me give an example. Some of us in TISA are over fifty (I am 56!).  For us, the challenges that we faced 20-30 years ago are no longer there. We are not giving high pressure interviews week after week to get a job; we are not struggling in an entry level job; nor are we trying to date that fair girl, who used to be so enamored of that other smooth talking, smart aleck in the neighborhood! I am not facing ANY of those challenges which caused and sustained my stammering in youth. Now suppose, I am practicing some technique too.

I have made my place in society at 56; my audience too accepts me, because I have been around so long. I have matured emotionally, above all. So, even if I stumble, neither myself nor my listeners make much of it, which is only right. But as a result, I get convinced that only using technique X has “cured” me. Should I go ahead and insist on teaching it to others? Will it help others, caught in different psycho-social context? Different life stages?

This has been a difficult question. In 2008, a young man wanted to write about “blowing conch-shell” on our blog, because he benefited by it. I am willing to believe that it may have worked for him. Stammering by nature is a variable phenomena: there are long spontaneous remissions. Why? No-one knows for sure, but correlation does not imply causation[10].

At the same time, we don’t want to pour cold water on people’s enthusiasm, who are trying to help themselves under difficult circumstances. Therefore, we have a policy: Do practice whatever benefits you and let TISA promote the core content, which has been well researched and documented for general public.

Neither do we prevent stammerers from seeking formal help. We have a general guideline on seeking therapy[11]. We give preference to Speech and Language Pathologists (SLPs) working in Government hospitals because the fee structure is fair, affordable and transparent[12].

But does self-help work?

We have often been asked: Does self-help work for everyone? We counter: Has therapy worked for everyone?! Gandhi said: “Change, like a tree, must grow ground up (not top down!)”. If the present quandary faced by all of us has to be resolved, stammerers should be at the heart of the change, not a therapist, however wise or well meaning. Yes, they may have a role at some point: they can educate teachers[13] and society to remove the stigma, as many health professionals have done for HIV/AIDS.

Let me explain: Therapy outcomes in stammering have been uniformly poor- both in adults and children. If we compare it with mis-articulation, we can see that treating stammering is like fighting your diversity, your biology, yourself: in brief- very frustrating. Dr. William H. Perkins, after fifty years of stuttering research, had the following to say:

“..Thus the blame lay in the professional failure to recognize that fluency is not the proper objective of therapy. Voluntarily controlled fluency could be helpful if it ever became automatic, BUT IT NEVER DID…” (Declaring War on Fluency)[14]

NSA’s May 2009 survey found that 84% of those who had speech therapy experienced a relapse after improving. Do stammerers seek therapy for short term benefit?

“Relapse” is almost the rule rather than the exception and indicates that therapy did not work in the first place[15]. If some children show improvement in some studies, how do you rule out natural recovery, in absence of control group?[16]  Psychotherapy similarly offers minor improvements – only in 8% of cases in a 1977 study[17]. Some of the best intensive programs have mixed outcomes, measured on the last day (not after 6 months)[18]. Let us face the facts: an average person who stutters (PWS) is looking for cure, and cure can not be offered by any program or therapy today. There are many scammers offering “the cure”[19]!

Paradigm Change

Insanity: doing the same thing over and over again and expecting different results.  (Albert Einstein)

As a medical professional, I am aware of the big changes that have come over medical science, because as a profession, we were willing to learn from emerging evidence and give up cherished positions. In the 70s in India, breast feeding was considered messy and risky. Infant formula (bottle) was highly and regularly recommended to new mothers! There was a powerful “infant formula” industry sustaining this trend[20]. Then, accumulating evidence led to reveal the vast benefits of breast-feeding[21]. After this, doctors began insisting: Breast is best.

Some time ago, a young PWS- Kamal (not his real name), who has been looking for a job, confided about his last interview. He was, naturally nervous and stumbled a couple of times. One of the panelists looked at him “carefully”. Kamal decided to set things at rest and talked about his stammering upfront. The panelist responded: Don’t educate us. Go to a speech therapist and get it fixed and then return! Kamal had had three attempts already! This is a sordid state of affairs for a world which produces and consumes information at a phenomenal rate- and still misses the point.

Medicalization may serve some purpose at times but, according to us, it also stigmatizes the behavior, disempowers the victim and passes on all the controls in to the hands of the powerful: technology groups and industry. In the case of stammering, we are not sure what the benefits are of “encouraging” a stammerer into therapy and how these benefits outweigh the cost: money, time, effort and the loss of faith in oneself and guilt[22] when the therapy or gadget fails.

I am aware of the deep problems faced by both stammerers and their therapists in India. Both parties do their best and still end up blaming each other and themselves! I think it is time to view the whole issue afresh. The effort therapists have put into changing a certain behavior and sustaining the change over the years could have given better results, had it been put into changing the social perception and attitudes; into making human diversity a valid object of study and respect. I will not make a similar appeal for those conditions where the cause is well understood and treatment has reasonably good consistent outcome – like misarticulation or cleft lip. But stammering is one area where the PWS is the only person who can help himself on a sustainable basis, by changing his and society’s perspective, by thinking of it as a diversity, rather than as a disorder to be cured or endured. Rather, we may celebrate our diversity and put it to best possible use: to take a closer look at ourselves, our potential and connect with others.

I must thank Cristobal Loriente for his groundbreaking paper (Towards a notion of Transfluency[23]) in this forum in 2009, which got me thinking in an entirely new direction. My heartfelt gratitude to my colleagues and friends in TISA too, co-travelers on an interesting journey!

Let me conclude with a thought from an American Buddhist nun:

“As human beings, not only do we seek resolution, but we also feel that we deserve resolution. However, not only do we not deserve resolution, we suffer from resolution. We don’t deserve resolution; we deserve something better than that. We deserve our birthright, which is the middle way, an open state of mind that can relax with paradox and ambiguity. To the degree that we’ve been avoiding uncertainty, we’re naturally going to have withdrawal symptoms; withdrawal from always thinking that there’s a problem and that someone, somewhere, needs to fix it.”

(Pema Chodron, “When Things Fall Apart”)

The end.

References

[1]  http://www.mnsu.edu/comdis/isad11/papers/srivastava11.html

[2]  http://www.sriramanamaharshi.org/teachings/instructions/

[3]  Selfless service is a limb of Yoga (Gita chapter 17, verse 20)

[4]  This is a report of the first (ten day!) communication workshop:
http://www.scribd.com/doc/26113740/Communication-Workshop
And here is the second one (5 days):
http://www.scribd.com/doc/29746286/Kolkata-Workshop
Now, we have reorganized the same content in a three day module, which needs to be repeated at least 2-3 times over an year.

[5]  This self help manual is offered as a free pdf file at:
http://stammer.in/publications/NewSHManual.pdf

[6]  http://www.casafuturatech.com/speecheasy/

[7]  http://t-tisa.blogspot.in/2010/12/genesis-of-scam.html

[8]  http://stammer.in/newsletter.html

[9]  These first four techniques have been adapted from Peter Reitzes excellent book: Fifty Great activities for children who stutter (link). We often preface these by saying: This is exactly what you normally do – you repeat a sound, stretch it, or just fall silent or go in a block and stammer. That is what these techniques are asking you to do- BUT with more awareness, grace, control, good eye contact, relaxed tummy and COURAGE in heart. Etc.

[10]  http://en.wikipedia.org/wiki/Correlation_does_not_imply_causation#Examples_of_illogically_inferring_causation_from_correlation

[11]  www.stammer.in/which-therapist-.html

[12]  http://t-tisa.blogspot.in/2010/10/wide-angle-view-of-therapy.html

[13]  Only three (out of 58) teachers reported having any formal training on stuttering (in a Mumbai study).   http://www.netques.eu/wp-content/uploads/2013/11/2011-IJDDE-beliefs-attitudes-indian-teachers-stuttering.pdf

[14]  https://www.ecu.edu/cs-dhs/csd/stutt.cfm

[15]  http://www.mnsu.edu/comdis/isad/papers/starkweather.html

[16]  http://thestutteringbrain.blogspot.in/2008/07/follow-up-study-to-lidcombe-outcome.html

[17]  http://www.veilsofstuttering.com/psychoth.html

[18]  http://www.casafuturatech.com/hollins-communications-research-institute/  (read to the bottom)

[19]  http://thestutteringbrain.blogspot.in/2010/08/name-and-shame-marketers-for.html

[20]  http://en.wikipedia.org/wiki/Nestl%C3%A9_boycott

[21]  http://babyreference.com/formula-feeding-doubles-infant-deaths-in-america/
http://pediatrics.aappublications.org/content/113/5/e435.full.pdf+html

[22] “..Some degree of therapy-induced guilt is built in to the whole venture of therapy..”  Therapy Induced Guilt : http://www.stutteringhelp.org/content/principles-counseling-people-who-stutter

[23]  http://www.mnsu.edu/comdis/isad12/papers/loriente12.html