TISA Database

"The Indian Stammering Association (TISA) intends to develop a database of Indian People Who Stammer (IPWS). This will include IPWS residing in various states of India as well as abroad. The aim of the database is to connect IPWS with each other so that they can share their feelings. TISA believes that the database will also contribute towards formation of more Self-Help Groups (SHGs) across the country. Therefore, TISA requests you to furnish your 1) Name and contact details and 2) Information on profession/work. Kindly note that TISA is NOT planning to upload this database on internet as of now and the database will be only shared with other IPWS. TISA looks forward to hear from all of you."

Sachin and Akash

Self Help groups: Herbertpur (Dehradun), Pune and Chennai!

The first step is always difficult in any worthwhile endeavor - even more so for PWS. But when we do take that first step- often in the form of going out and meeting other PWS, we have truly taken a quantum leap- and the positive effects are felt for months altogether. Many PWS are doing it around the globe- unknown to us. Here are just two pictures: one from Herbertpur and the second from Pune. Chennai pictures are being awaited avidly! And these are only the physical ones, not to talk of the web based ones..
Friends, we are meeting one of these days across the Vindhya! for a big SHG meet!

Skyping

I recently listened to one of the podcasts from stuttertalk: interview with Dr Phil Schneider. It was good. Wonder when some AIR bureaucrat will let us do a similar program on AIR, if ever?
Then, again, I was talking to a friend from Pune and it brought back the need to talk, rather than just write to each other- as far as we the PWS are concerned. So, I have installed the latest version and am ready. My skype ID is "satyendra.srivastava" and will be available most often between 8pm and 11 pm. Sometime I travel out- may be 7-8 days a month. Whenever I log in, you should be able to see me, after you have added me as one of the contacts. I just checked it by talking to someone in USA and it worked. Here is the page, where you can get the 3.8 free version of skype for windows:
http://www.skype.com/intl/en/download/skype/windows/
Happy skyping!
Share your skype IDs!
sachin

"Cure" of stammering?

Someone has left a comment (anonymous, no email ID and poor choice of words!) questioning the concept of 'cure' from stammering. This has made me think deeply and pen following thoughts.

1. From mainstream medical perspective, there can be many kinds of cure: bacteriological, symptomatic, functional etc. If the sick person has been able to reach a state of freedom from discomfort / pain etc. many would call it cure. Cure is not a fixed, static, one-sided concept. Therefore, clients are encouraged to discuss the various outcomes with their therapists and choose one. They are also encouraged to ascertain what does 'cure' means in their particular case. A common understanding of the term can be developed only through dialog and inquiry. This is what PWS too are expected to do - rather than balk at the term “cure”.

2. For many stammerers, if a program helps them to accept themselves with their overall speech, to communicate effectively in spite of their stammer, to stammer in a less stressful way, to be free of the shame and fear often associated with stammering- THIS would be a 'cure' for them. This is what many therapist aim at and offer as 'cure'. So 'stammering mindset' can be cured, even if neuro-physiological deficit in brain probably can not- in our present state of knowledge.

3. Many recovering/ recovered stutterers have used the term 'cure' in a broad but significant sense. Let us see, what they say:

1. “Coping with stuttering took another turn last year when I attended my first National Stuttering Project convention in Denver. There was no shortage of role models and I came away from the experience with the ability to look at myself in a truly positive way for the first time. The change occurred when I wasn't looking. I find myself stuttering more openly with those around me (even strangers) than I have ever done with no more beating myself over a block. .. Perhaps my newfound self image will be the closest I will come to being "cured". (by Tony Troiano: http://www.mnsu.edu/comdis/kuster/casestudy/path/tony.html )

2. “.. I've felt like this when I stuttered. No one can help me. No one can define it. It's coming from nowhere. Well, it wasn't coming from nowhere. I was creating it each time. I used to tell people when they would look at my article initially, I'm not proposing a way to cure stuttering. All I'm proposing is a way that you can stop creating it. Because you create it every time.” (JACK MENEAR; http://www.mnsu.edu/comdis/kuster/Infostuttering/recovered.html )

3. “..And yet I recovered. When I say I recovered, I don’t mean that I’m a controlled stutterer. I mean that the impulse to block is no longer present. It’s gone... Now, according to most people, that’s not supposed to happen. I’ve heard hundreds and hundreds of people say, “There’s no cure for stuttering. Once a stutterer, always a stutterer. Nobody knows what causes stuttering.” Many of those people have been in the professional community. Mostly, they talk about controlling one’s stuttering. But they don’t talk about disappearing it.
   (John C. Harrison; http://www.mnsu.edu/comdis/kuster/Infostuttering/Harrison/john.htm)

4. “..There are two fundamental things that you need to know about me:

• I stutter, and if you talk with me for 30 seconds there will be no question in anyone's mind that I do, indeed, stutter by anyone's definition.

• I lead the life of a fluent person in that my disfluencies have little to no effect on my life style.
  That tends to indicate that I am a "recovered" stutterer - DESPITE THE FACT THAT I STILL STUTTER..” (Russ Hicks; http://www.mnsu.edu/comdis/kuster/casestudy/path/hickspath.html )

5. “..There are many different ways to manage stuttering and a variety of ways to define recovery. Recovering from stuttering for me has not been about fluency. It has been about arriving at the realization that stuttering is not a failure and that fluency is not a success. It has been about learning to accept myself and my stuttering unconditionally. .. It has meant continuing to respond differently in the face of fear and moving through the shame surrounding my stuttering. (Chmela; http://www.mnsu.edu/comdis/kuster/casestudy/path/chmela.html )

One can see some common strands running through the above testimonies:

1. Cure does not mean TOTAL absence of disfluencies, commonly associated with stammering.

2. Most stammerers take in consideration, not just fluency but ability to get through, to communicate; not just speech but their entire life style, relationships, attitudes, beliefs, value system etc. Any approach which helps them to bring in such a widespread change, is likely to be considered by them as 'recovery' or 'cure'.

3. For some, cure, in its most rigorous sense too is possible (vide the testimony by John C. Harrison above). This is because there is no one (single) cause of stammering. There are many causative / contributory factors. Therefore one PWS may make a complete recovery, while others may not in the same sense; while others may not even care for it.
   “..Stuttering is like a bog, a swamp. Many paths lead to it. Many paths lead out of it..”

So it boils down to:

1. Do not reject the possibility of a cure out of hand. Be optimistic.

2. Discuss with the therapist who is offering a 'cure' what does s/he mean by it; what would it mean in your particular case and how is it better than your present state.

3. Some therapists would use the term 'cure' but would mean something different, something special as above. Some therapists would use it, because that is what a young desperate PWS is looking for and will not accept anything less- even to start talking to a therapist. Is it ethical? That could be a big debate- but our thoughts are: Discuss everything before hand. Compare fee structure. Talk to some old / existing clients. And finally, take responsibility for your own well being- therapist is there just to help and facilitate.

Hope this helps. Let us know your take on this.

Bravo Chennai!

The Chennai group, facilitated by Mr Manimaran is meeting regularly on - guess where?- of course Marina beach. Accepting new friends, sharing information and offering support in many other ways is the hallmark of this group. TISA is considering a stammering carnival in Chennai, sometime in September. (Please let us know, why this should not be done or ... just join us :-))
BTW, check out this link about Marina beach:
http://www.tamilnow.com/tourism/chennai/marina-beach.html

Stuttering and shame..

We have been reading some accounts of recovery from stuttering mindset.. One common thread appears to be: freedom from shame and fear of stuttering. Many of us focus too much on fluency, speech techniques, breathing, eye contact etc. but not enough on these deeper pervasive issues- attitude and emotions. Dr Sheehan's iceberg model also talks of these deeper factors which sustain stuttering in the long term and explain relapses. Here is a true story from a woman SLP:

http://www.mnsu.edu/comdis/kuster/casestudy/path/chmela.html

Are there differences in Asian and “western” societies, when it comes to dealing with such emotions? Emotion of shame, for example? Are these emotions repressed more vigorously in Asia? More systematically? For example, some anthropologists have wondered about the concept of “shame” (Laaj) among Asian women, which internally holds them back from doing many things, specifically things not approved by society but quite harmless inherently (like riding a bike in rural areas). Is it more difficult to deal with shame, if you are an Asian? We would like to know what you think.

Stammering - a disability?

Stammering- a disability? Tough question. Many PWS will strongly deny that. But some would say ‘yes’ to it. But what is the government stand? If government were to accept it, it would have to extend its “reasonable accommodation” further to PWS. So, they side step the issue. Also, stammering does not easily fits into the mainstream concepts of disability (fixed, obvious, static, consistent). Here is an excerpt from an article on ‘Disability India Network’:

…According to Census of India, a person is recorded as having speech disability, if she/he is dumb, or a listener does not understand speech. A person who stammers but whose speech is comprehensible will not be classified as disabled by speech. NSSO include among speech disabled, those who could not speak, spoke only limited words or those with loss of voice. It also include those whose speech is not understood due to defects in speech such as stammering, nasal voice, horse voice and discordant voice and articulation defects etc. In this case person with stammering voice are classified as disabled by NSSO where as they are not classified as disabled by the Census of India…( Kishor Bhanushali)

Here is the complete article:

http://www.disabilityindia.org/nsso-census.cfm

Here is a link to GOI’s policy on disability. Good document- but who will implement it? And how?

http://www.disabilityindia.org/nationalpolicyfordisable.cfm

Another very good article about rural disabled in India:

http://www.disabilityindia.org/rehabDisabled.cfm

(Reposted from SamagraIndia blog)