‘..The way our “worthy” alcoholics have sometime tried to judge the “less worthy” is, as we look back on it, rather comical. Imagine, if you can, one alcoholic judging another.. ‘

(A quote from Bill Wilson, from “Spirituality of Imperfection”)

Judge not: We have been judged for our speech. We have judged others similarly on superficial grounds. Some of us, who stammer less have judged others who stammer more. But “imperfection” is our nature and there is something quite “spiritual” about it, provided we accept ourselves as we are; then, accepting others with their “imperfections” comes easy. This is the basis of the self-help group movement. TISA’s mandate is to promote self-help groups - both the physical ones and the web based ones. Through such a movement, which generates an exchange of information, we hope to influence attitudes all around- both of those who stutter and those who do not: “Better attitudes through knowledge” - this is TISA’s motto.

Acceptance & Action: Information and acceptance is not enough. Affirmative action is the final step which gives meaning to our journey out of our personal prisons of suffering. So following three steps or affirmations constitute the guiding principles of TISA SHGs.

• I accept my SELF with my STAMMER

• I accept others who STAMMER

• I will try my best to help myself and serve others who STAMMER

Acc

ptanAcceptance does not mean that we do not seek and practice whatever therapy or self-help is available to us. It does not mean that we do not work at our communication, career, attitude and relationships. It only means that we do not think less of ourselves when we stammer and are not apologetic about it.

A safe environment: self-help groups provide a safe environment to explore our speech and related emotions, beliefs and attitudes as well as a supportive atmosphere to practice new skills. We also discover in a group that we are not alone, facing this problem. We feel empowered to approach or invite others and talk to them about this little understood problem. For children and adolescents, this support can be life changing.

Finally the support group or self-group is not only to support us, who stutter but also to provide support to our family members who may be passing through a difficult time because of our communication difficulties. It can also be a venue for students of Speech pathology and young SLPs to learn from PWS and share their skills. A good facilitator of a SHG will also try to extend the horizons of her or his group by inviting people suffering from other rare disorders like Tourrette's syndrome, Neurological Stammering, Albinism, Dyslexia etc. Such cross-learning can help a group formulate its own advocacy efforts in the long run.

Structure : TISA currently is an association of individual PWS from different parts of the country. We are in touch with each other through the web, phone and personal meetings. Our current focus is on functional groups led by individuals of exceptional motivation and organizational skills- rather than a physical organization concentrated in one place. These individuals are nominated as the Coordinator of the regional chapters (state or city based). These regional chapters are encouraged to raise local contributions and use it to promote the SHG movement and better understanding of stammering in the general public. At the national level, there is a core team headed by a Coordinator currently. TISA is at an early stage of evolution. We are looking for more PWS to join the core team- people with skills and experience of advocacy / legal action, fund raising, media campaigns, writing and translation etc.

Members: TISA has some NRI PWS too as our core group members. More such NRIs are welcome. PWS, who practice as SLPs or Speech counselors too are welcome. People who do not stammer, but have promoted better understanding of our issues will always be welcome to join as honorary / special members. Family members of PWS are also welcome to join TISA. People promoting or representing commercial interests (drugs or electronic aids) or exclusive therapy groups, should not be invited to TISA meetings, since TISA is all about self-help based on altruism.

Working with SLPs: TISA values and wishes to work with selected SLPs across the country but on fair and transparent terms; the current fee structure and therapy schedules are obviously unsustainable for an average PWS in India. New modalities need to be worked out. Secondly, many therapists make the situation worse by claiming that stammering is ‘curable’. Modern research disproves such claims. And those who continue to stammer openly are made to feel bad, because the society is led to believe that this person is too lazy to work on his speech, that is why he or she still continues to stammer. SLPs should have the courage and honesty to say that there is no known ‘cure’ but yes, successful management can be learned.

An Indian Organization: Even though we are an Indian association, we are in touch with other national stammering associations, and wish to record our thanks to International Stammering Association (ISA) for the help it extended to TISA in the formative years (2006-07) through the valuable services of Mr Keith Boss.

TISA blog is our public notice board, announcing regional meetings, advocacy campaigns and sharing general information:

http://t-tisa.blogspot.com/

The chat group where TISA offers more specific counseling, self-help material and other specific information for PWS is located at Yahoo:

http://health.groups.yahoo.com/group/IndianPWS

Financing: If you appreciate the efforts done by TISA, make a contribution to the local chapter and do ask for a progress report! Some of the major activities which need funds urgently are:

• Media campaigns (to change attitudes through sharing of correct information); Observation of 22nd October (International Stammering Awareness Day)

• Travel and logistics for young PWS to participate in SHG in nearby cities;

• 2-3 day intensive residential camps for PWS.

• Translation and publication of informational booklets and pamphlets on stammering

• Production of educational video projects dealing objectively with stammering

• Regional meets, inviting speech pathology experts, educationists, media and policy makers to take affirmative steps

Let us conclude with a thought from Aesop, who stammered and left behind many tales of wisdom: What you think is not enough: what you do, however, does change your today and influences your tomorrow..