Showing posts with label Advocacy. Show all posts
Showing posts with label Advocacy. Show all posts

March 1, 2014

Living with stammering..

Friends here is a true story.. Very inspiring..
http://www.totalashford.com/2014/02/23/living-with-a-stammer-an-inspirational-story-from-a-recovering-stammerer/
Please listen to the whole interview.. It is full of deep insights!

I also happen to see this item: How NSA is helping children and their parents in innovative ways..http://royaloak.patch.com/groups/around-town/p/family-fun-day-for-people-who-stutter-to-be-held-in-royal-oak

Lots to learn!

May 28, 2012

Worker sacked due to stutter in UK

Friends, here is a shocking story from UK about a worker being sacked due to stutter; This is why, we need to work with society, sharing what we know with them and changing their attitudes towards stammering and stammerers. Seeking fluency just for ourselves is not going to be enough..

http://www.readingchronicle.co.uk/news/roundup/articles/2012/05/24/59806-shop-worker-i-was-sacked-over-stutter/

April 1, 2012

Morning Meditations

Here are two posts, which made my morning today. Hope it does same for you. Are stammerers mocked only in India? Obviously not. But for every such act, many people will come out in support of the person being mocked; check this:
http://www.midwestsportsfans.com/2012/03/michael-kidd-gilchrist-deserves-praise-not-mockery-as-he-battles-stutter-in-public-view/ 

What happens in this country? We make Golmal 3 to celebrate the diversity! And many people support it in the name of creative freedom..
Another story where, Therapist come out and talk about the need for change in society, is quite interesting. In my experience, therapists in India, dont see that as a legitimate concern for themselves..
http://www.nytimes.com/2012/03/28/sports/golf/for-the-golfer-sophie-gustafson-public-speaking-is-no-longer-a-hazard.html?_r=1

Keep changing and keep enjoying it..

December 3, 2011

World Disability Day

Are people with "regular" disability better adjusted in their environment, with their inner self as compared to average pws? Pawan and I went and particiapted in the disability rally in Vikasnagar and interacted with many people to understand that question- as well as, understand what do people think about stammering? While Pawan handled the camera, I interviewed people .. On the whole a nice afternoon, spent with a vibrant group of people. While others learned about stammering from us, we learned a LOT about the big big world out there of people facing other issues, daily and triumphantly. We met parents, special educators, students etc. Our sincere thanks to Anugrah Team and Mr Vinai Saini for letting us be a part of this great meeting, wonderful gathering. Here is the video..
http://www.youtube.com/watch?v=N1DwYNkpYas

November 7, 2011

A True Teacher : M S Rathore


It was heartening to see the KBC episode with Mahendra Singh Rathore from Panna, Madhya Pradesh. A lot of issues faced by the people who stutter came forth as this episode progressed. Hats off to Rathore for having the courage to accept and talk about his stammering.

August 17, 2011

Protest thou shall..

If any of our readers or IPWS participate in the current protest against corruption, please feel free to post your experiences here..

July 2, 2011

Stammering a disability?

We had had this argument sometime back- and there are strong adherents on both sides! Something to be said both for and against that position. But let us get the discussion more informed. Here is a pdf file submitted by Australia Speak Easy Association (ASEA), in collaboration with speech pathologists, to request the Australian government to accept that it is a disability, which deserves affirmative response, as in the case of other disabilities. Please read it and leave your comments:
http://www.pc.gov.au/__data/assets/pdf_file/0009/108585/subdr701.pdf

This is where you can see how the Australian government is going about this public inquiry :
http://www.pc.gov.au/projects/inquiry/disability-support

June 2, 2011

Is Hope a good thing?


A few days back I was trying to think what could be a good parallel or simile for the hope which average stammerer (I included) carries in his heart, that one day he will be okay, he will speak like a “normal” person, he will be fully cured..

I suddenly came up with an idea: the only other example of such a phenomena is our faith in afterlife, in our indestructibility. The creation may end, but we are very much there, watching it as it ends.. We can not imagine a time when we will NOT BE. This faith in persistence of life after DEATH, is pernicious and found in almost every culture and faith. This hope in eternal life is at the core of all major religions. But it is problematic too, when not guided by “knowledge”, as Vivekanand discovered, when he went to America.

He met a lady who was a medium (medium between our world and spirit world). He was invited to a seance and there he saw how this eternal hope and faith in afterlife is used by charlatans to fool simple people in America. A young man was shown his dead mother (now, ofcourse much changed) and very gullibly he reacts- Mother! how beautiful you have grown in the spirit land! Vivekanand was amused and felt that people needed to be more objective even in religious matters.

Here is the incidence:

“There was one of those ladies who bring the departed spirits down to us — a medium. She was very large, yet she was called medium. Very good! This lady liked me very much and invited me to come. The spirits were all very polite to me. I had a very peculiar experience. You understand, it was a [seance], midnight. The medium said, ". . . I see a ghost standing here. The ghost tells me that there is a Hindu gentleman on that bench." I stood up and said, "It required no ghost to tell you that."

There was a young man present who was married, intelligent, and well educated. He was there to see his mother. The medium said, "So-and-so's mother is here." This young man had been telling me about his mother. She was very thin when she died, but the mother that came out of the screen! You ought to have seen her! I wanted to see what this young man would do. To my surprise he jumped up and embraced this spirit and said. "Oh mother, how beautiful you have grown in the spirit land!" I said, "I am blessed that I am here. It gives me an insight into human nature!" (from Complete works of Sw Vivekanand)

Now, going back to where I started from: Could it be that similar “mediums” are taking us for a ride, just because we have this irresistible faith in CURE? An IPWS has spent over Rs 20,000 and still does not know whether stammering can be cured or not (link 1, link 2) . The people who assured him of this cure, refuse to respond to his questions. Others say- such 'therapists' may not know technical stuff but their therapy has done 'some' good to 'some' people. Do people who charge fee for their services, should not be updating their knowledge and sharing it with their clients? At least on the important issue of CURE? Should they not discuss at the very outset with the client, what is possible and what is not? Can we use questionable means to honourable ends?

It is time that we realize that our faith in cure is hurting us. It has given rise to an industry selling us "Cure" through crash courses, pdf files (for 39 dollars), DAF machines (Rs 5 lacs in India), computer based programs etc etc. Yes, amid all this hectic "business", there is hope: self help and self help groups are available, Vipassana, Brahma Vidya, Yoga etc are there. Communication workshops run by others and TISA too are there. Hope is there but not a dreamy one- a hope based on facts and realities.

May 24, 2011

About Ethics and Cure

The protest against SCC, Bangalore has triggered an interesting debate- Stammering Cure. Cure in medical terms is achieved when the health is restored back to it’s normal state after being affected by a disease, and the symptoms of the disease no longer exist. For instance, if I had malaria, one major symptom would be- I would be getting high fever accompanied with shivering. When I go to the doctor, he assures me cure with his medications. I take the course of the medicine and gradually observe that the symptoms begin to diminish, and finally I will cease to have high fever and other symptoms.

In the same context, if we consider stammering, and sit back and think about the symptoms of stammering, it would be- sudden blocks experienced into the speech system while trying to speak, leading to lack of co-ordination of breathing and talking, resulting into a distorted and broken speech. Let’s leave aside the secondary symptoms and the emotional baggage for time being. Now, what would cure mean in such circumstances? Anything that promises a cure should stop the symptoms. Once cured, those sudden blocks during speech will no longer be experienced, thus leading to a smooth flow of air and speech, and end result- FLUENCY!

Has medical science been able to offer this yet to people who stammer? Is there a 5-day (or rather 15-day) course of some therapy or even medications- a few tablets and may be syrup and the blocks disappear? Unfortunately, this miracle has not yet happened! Stammering and it’s causes and so to speak it’s cure has continued to be an unsolved mystery.

Now, continuing with our analogy- what would happen if there was a doctor claiming to cure malaria in just 1 day?! He would certainly pull a lot of crowd. Now what if he treats the patients by a paracetamol like Crocin, applies cotton soaked in cologne-water on the forehead and tells the patient to sleep for 6 hours with a thick blanket? The paracetamol will certainly bring down his high fever within hours. The shivering will also stop, and the patient will feel much better when his body temperature is back to normal! And the doctor says- “Voila! You are cured! Your body temperature is normal! I have cured you within 6 hours!” Is this ethical on the doctor’s part? Definitely not!

Now, on the protest. Medically, it is unethical to promise a cure for a disease or a condition which has no known cure, and can only be controlled. Leave aside stammering- diseases like Diabetes and Parkinson’s disease don’t have a cure, but can be controlled. For such patients, if I am not wrong, doctors would never promise a ‘sure cure’.

With regards to stammering, for many of us, controlling our stammering effectively is cure! I came across many PWS who often say- Hrithik has cured his stammer! Dr. Sachin is cured too! And so are Gareth Gates (UK Pop singer) and Julia Irani! But have they stopped experiencing those sudden blocks?

It’s the ethics that is being questioned here… Medically and scientifically, attaining control over a condition or a disease is NOT A CURE! Be it Diabetes, or Parkinson’s or Stammering!

May 21, 2011

Get the ‘cure’ out..!

I came across Partha Bagchi’s Stammering Cure Centre in the year 1998, when he advertised on a newspaper in Goa. The advertisement showed a lot of promise, and claimed to be the only centre which can cure stammering in two weeks. My parents planned a visit to the centre. When I visited him for the first time, I was really impressed about the way he talked. He was speaking really slow and didn’t show any trace of stammering. When he told us he was a severe stammerer for 26 years, I was even more impressed. I thought if he can speak like that with his techniques, then his techniques have to be effective! He insisted I should join the 15-day crash course, but then I had to opt for a correspondence course because of my college schedules.

I practiced his exercises. A few times I was fluent. But then suddenly one single block was enough for the stammering to return. At this moment, I thought a regular course would be a solution to my problems. Then he held a camp in Goa, where he held his regular course for locals. I attended that course. It was a good experience, with some useful techniques like- Speaking in front of the mirror, speaking in front of the crowd on a microphone, meditation etc. I was 100% fluent during the entire 15 days in those ‘clinical’ conditions. Even a few days after that, I managed to speak slow and maintain fluency. I continued practice. One fine day, I had a bad speaking experience which triggered a relapse. I practiced his techniques for 6 months religiously. Then the roller-coaster ride started of fluent days and not-so-fluent days. I began to blame myself for not being able to do the practice dedicatedly, and thought that I lacked the will power to achieve fluency. In the meanwhile, Partha Bagchi continued to be a role-model, and I always looked up to him as he always gave me a hope that if he can overcome his stammer, so can I.

I joined TISA in 2009, and despite knowing the fact that Partha Bagchi was not in the good books of TISA school of thoughts, he remained to be a role model, because of the way he has managed to gain control over his stammering.

My opinion about my role model changed because of a few reasons. I read quiet a lot about many other such ‘Cure-centres’ in India as well as other countries. I also read that there was no known cure for stammering. This is the biggest point of objection, which even holds true with Mr. Bagchi’s SCC- the use of the word ‘cure’. What these centres offer are techniques which help us deal with our stammering, techniques which facilitates control over our speech impediment and ways of managing to communicate WITH our stammer. And this is not CURE and should not be sold as CURE. Because the word cure is so tempting to PWS (I am included) that we are ready to shelve any amount of money to find it! Another thing that was shocking about Mr. Bagchi was the fact that he refused to reply to his students who asked his help when they were unable to put his techniques to practice. I had held a great respect for Mr. Bagchi and I believed that he has a motive in his life of helping the PWS. But if he refuses to reply to his students seeking help after failing the course, then it’s not really a help. Because like me, all these PWS will continue to idolize him and victimize themselves for not having tried enough thus trapping themselves into the bog of guilt.

I still maintain Mr. Bagchi’s techniques are good and quite helpful, but they don’t cure stammering. I have no problem if Mr. Bagchi charges fees for his crash course. But how does he justify the cost of Rs. 10,000? He will be a role model again if he is open to discussion with self help organisations like TISA, professional speech therapists or any other certifying authority. He will be a role model again if he admits that the use of the word cure is not appropriate and changes the name of his centre to – “Stammering Management Centre”.

May 20, 2011

Is there a cure?

Can Partho Bagchi cure stammering? Is he cured himself?
Sadly, answer to both questions is NO. Please watch the video testimony of an ex-client of SCC. This testimony emphasises that it is better to go for a trained SLP, Yoga, Meditation, self-help group etc. than to waste money at SCC, Banglore, chasing the promised cure. Talking in a medium lengthening style is an act of CONTROL not CURE.
Stammerers are very polite people. They dont want to offend anyone. But by keeping quiet, they encourage many young desperate stammerers to sink their hard cash at SCC. There is no refund policy; there is no grievance redressal mechanism at SCC.
There are cases who improve on their own (spontaneous recovery) in natural world. Such people may go to X or Y and sincerely believe that they were CURED by X or Y. But what about 99% who are not helped and who keep quiet? There is great need to be OBJECTIVE rather than polite or 'ever grateful' to a particular therapist.
Again, SCC is giving franchisee on the techniques, which have been invented by Partho Bagchi, as per the website. This is highly unethical. Everything SCC teaches has been known to SLP teachers, Yoga practitioners, Psychologists and others for a long time. Let SCC disprove it- and then sell it.
Some time back, while conducting a TISA Communication workshop in Kolkata, I happened to be talking to one of SCC students. He too said that Partho Bagchi still stammers. This is perfectly FINE by me. I accept my stammer and others' stammer as well. But misleading young PWS is NOT fine. Why did he not talk to him (Mr Partho) about this? Well, he thought: Let me just focus on my own cure... This student too had attended more than one course at SCC and had not benefited at all.
By keeping quiet, whom do we benefit? whom do we harm?

May 19, 2011

Stop preying on desperate people in distress..

Latest: Read Sanjib's Interview.
Dear Friends
TISA has received a complaint from a young IPWS and therefore started
a campaign against Stammering Cure Center, Banglore, run by Mr Partho
Bagchi, an ex Accountant. He claims that he has cured thousands and he
can cure any kind of stammering under two weeks.
Here is the link to our protest:

http://stammer.in/component/content/article/34-cat-info/450-secret-of-smile-on-his-face.html

India is full of such unethical people who prey on the desperation and
misery of stammerers. It is time they changed their ways. TISA will be very grateful if you can share/promote this link, spread the word, and help us get more information on SCC. Feel free to ask any questions..
sachin

May 13, 2011

Handicapped..?

A few days ago, I read a post on TISA blog which inquired about scholarships on the basis of stammering. Dr. Akash replied that unless stammering is formally recognized as a handicap by the Government of India, scholarships couldn’t be granted. I also noticed a few comments which complained and fretted about the fact that Stammering is not identified as a handicap. I have an opinion on this…

Personally speaking, I do not endorse the idea and the need for stammering to be identified as a ‘handicap’. I feel it is ridiculous and a step backward by the PWS community. We, the PWS today are talking about acceptance and being accepted by the society the way we are. And to do this, we try to create awareness. We want society to give stammering it’s due. We don’t want the corporate to reject PWS candidates in job interviews purely on the basis of just stammering. That’s because we believe in our abilities and consider ourselves enough competent to make it big in our respective fields, despite our stammer. And we believe that stammering is not going to be any hindrance in the career paths of any profession. And by pleading for a ‘handicap’ status, we negate all this.

Stammering in India is not considered as a handicap, and we should be happy about this. It means others don’t look us differently and as having some disabilities. Then why are we forcing the world to believe that we are disabled, and need help and scholarships- just because we stutter? Do we want to see PWS given easy entries into colleges / IITs and IIMs and Government Jobs with relaxed cut-offs? Are we seeking sympathy and expecting the rules to be relaxed, because we stutter? How are we going to help ourselves with such a plea? In what way will it benefit us if we have reservations because of our stuttering?

Why should we be looking for Sympathy and Pity rather than looking for recognition and opportunities?

Opinions invited…

April 3, 2011

I m OK, U r OK.

A very popular psychology book, promoted the understanding of how we view ourselves and the world- and how these basic concepts warps our interactions with others as we grow up. "I am not okay, you are not okay" will give rise to intense negativity and sociopathy. "I am okay, you are not okay" gives rise to superiority complex and disdain for the world.

Many of us PWS, suffer from "I am not okay, you are okay." As a result, whenever a technique or therapy or gadget, stops working for us- we tend to blame ourselves, not the other party: May be I did not practice medium lengthening technique when I should have. May be I am not calm enough therefore it is not working. There must be something wrong with me..

Such reasoning does not help but still we indulge in it no end. Read this post about how parents are systematically made to feel guilty about the dis-fluency of their child by the therapist, society and the scientists. Therapists is under pressure to prove that she/he is earning the money they are charging the parents. People promoting a therapy, are under pressure: since medical science (and technology) can fix everything, why cant it fix stammering? There has got to be a way.. Parents too are under pressure, since "Experts" have told them that if they work hard enough and spend sufficient money, their child's stammering can be 'fixed'.

The child too is under pressure- he wants to please his therapist, his parents. But pressure and great expectations only make his stammering worse. And unlike others, the child cant blame others; he cant pass the buck..

Interestingly, no one in this cycle, will talk about educating the society to develop more acceptance for the act of stammering and for the stammering child..

November 25, 2010

Rs 20,000 fee for stammering "cure"

I was doing a little bit of search on Internet about the fee for stammering "cure". I came across this page:
http://www.stammeringindia.com/charges_fees.htm

I was surprised that it did not mention the fee. Just gave a phone number - 09815002267. I phoned and mentioned that I wish to refer some children who stammer (- true actually-). The doctor sahab told me- it is twenty sittings of 2-2.5 hours spread over 20 or more days; each sitting costing Rs 1000. Total course will cost Rs 20,000 and it will reduce stammering to 90% plus. If follow up needed (rarely), its cost is included in Rs 20,000.

I wonder, why did Dr Dyal Chhabra does not put this information on the fee page of their website? Just wondering.

Also wondering why none of the Indian speech therapists, who charge Rs 20,000 for 20 sessions, will never protest unscientific, unethical portrayal of stammering in media? Do they think, that their clinic is the whole of their world?

It is very heart warming to see how the SLPs and Stammering associations in other countries are gearing up to rectify the mis-representation of basic facts about stammering in the movie "King's Speech".

November 22, 2010

A Therapist who truly cares

TISA was very happy to read this comment from an American Speech therapist on our on line petition:
As the executive director of the American Institute for Stuttering in New York City and a speech therapist who helps those who stutter I find this film offensive. We have devoted our lives to help those who stutter, to educate an uniformed public, and to change public perception of those who stutter. This movie, from viewing of the trailor, appears to support that riducule of those who stutter is okay, that people who stutter are of lesser intelligence (untrue completely), and supports that it is okay to make fun of those with a neurologically/physically based disorder. I am pleased that this Friday, November 26th, in the United States, the King's Speech is being relased. This movie depicts King George VI, a person who stutters, with dignity and respect. You can see the struggle and frustration that is involved and realize that it is no laughing matter. I am hoping we can all continue to spread a message of acceptance and to understand the great courage and strength that people who stutter have.
(Chamonix Sikora)

November 19, 2010

TISA's response to Comments in Media

In the first week of November 2010, we shared our views and the grounds of our petition, with the leading media houses. But nothing ever surfaced. Now suddenly the news is all over and it shares the view point of the makers of Golmaal 3. Veiled doubts have been raised about our motives and seriousness. While the matter is certainly sub-judis, here is our response to some of these questions raised in media.

1. Such films have been made in the past, why is TISA objecting now?

TISA got registered as a public charitable trust only in November 2009. It was not humanly possible to screen and react to every movie; In any case, we positively appreciate the sensitive, balanced and objective portrayal of stammering in movies like Ajab Prem ki Gajab Kahani, Kaminey, Jhutha hi sahi. These movies do not portray stammering as a constant source for teasing, cheap laughter and stereotyping of people who stammer as socially and intellectually deficient people. In Golmaal 3, stammering character is not the hero (as claimed by Shreyas in the news item in Mumbai Mirror) and is only a character introduced to evoke laughter, in a cast full of characters. He is constantly being made fun of for his speech.

2. If not this, what else could create comedy?
We do not believe that laughter has to be evoked at the cost of some or the other disability. There have been many good comedies (the original Golmaal, Chupke Chupke, Jaane Bi Do yaaron - to name a few). Comedy could be based on situations rather than on people's appearance, speech, walk and such characteristics over which they may have no or little control. A difference has to be made in what is clearly a disease or a disability on one hand and on the other, peculiarities, which are not considered a health condition. While other disabilities (like blindness and paraplegia) evoke a thoughtful response in society, stammering unfortunately often evokes laughter. This is why, we think, stammering should receive a better treatment as Dyslexia received in Taare Zamin Par, and Paraplegia in Guzaarish: sensitive, balanced and objective portrayal. There is already a social stigma against stammerers, why worsen it through such negative stereotyping?

Secondly, many people and movies assume that stammering is a habit, just lack of self-confidence, a funny emotional thing etc. For last few years it has been known that it is not so- that it is a neurological condition based in BIOLOGY. Read this article at British Stammering Association:
http://www.stammering.org/brainresearch.html

Further, teasing and bullying of children and even adults who stammer, makes their problems worse. Golmaal 3 clearly sends a message out: it is okay to tease a person about his/her stammer. Read this article to learn about the role teasing/ bullying plays in evolution of stammering in childhood and adolescence :
http://www.westutter.org/whoWeHelp/Treatment-Info-teachers.htm

Therefore many schools are supposed to have clearcut “no-tolerance” policy, certainly in west. Look at these links:
http://www.stammering.org/bullying09.html
http://www.stammering.org/masteringbullying.html
http://www.stammering.org/teachers_info.html#Teasing

3. It should be seen just as a comedy film. Why spoil the fun?
TISA does not wish to infringe on anyone's right to watch any movie. If a certain section insists and likes, there could be Golmaal 4, 5, 6, and 7! To quote a mainstream review:

“The film's trailer blatantly lays the onus on the viewer...
"You liked Golmaal and Golmaal Returns, here have some more! You can't really blame us, your behavior showed your preference." So, now we can't even blame the makers, eh? Oh well...” (link)

We have nothing against the actors or the movie makers. But the movie begins with an apology to the dog:
"The dog used in one of the sequences in the film is a dummy and no harm was done to the real dog."
Well, this dog sequence lasted hardly for a few minutes in the whole film. But the poking of fun at the mute and stammering character, continues through out the film. And there is not a single line of apology anywhere!

4. The poking of fun on stammering was not intentional..
Can anyone believe, if one said that the use of the dog called facebook, was not intentional? The frequent mocking of stammering and the mute character, was not intentional, but just crept in as a last minute improvisation? a last minute inspiration of creativity? Just an accident while shooting?
If so, why the apology to Animal rights groups in the beginning of the movie? and why not to the people who stammer and who are mute? No, use of stammering and its mocking, to produce cheap laughter is an integral, intentional part of the movie Golmaal 3. To this, we object.

5. TISA is trying to ban the movie: No, our humble request is to edit out such scenes and re-release, if possible. At the very least, accept that it is ethically wrong, damaging to self-respect of people with disabilities, and in poor taste.

We are just demanding that stammering be treated as a disability and with a sense of social responsibility for above mentioned medical reasons. 10-15% of India's 45 crore children stammer. 2-3 % of adults stammer. We are a significant minority and wish to be treated like other citizens- with dignity. (Please read the comments left behind by the signatories to our petition addressed to “censor board”.)

November 16, 2010

Rights less than Dogs' !

I have two dogs and I love them. So, I was suitably impressed by the opening lines in Golmaal 3 (see the pic above):
"The dog used in one of the sequences in the film is a dummy and no harm was done to the real dog."
How thoughtful! Well, this dog sequence lasted hardly for a few minutes in the whole film. But the poking of fun at the mute and stammering character, continues through out the film. And there is not a single line of apology anywhere. Could the Golmaal-3 team not put just one line at the beginning like: Making fun of people with disabilities is not our intention. However if anyone is hurt, we apologize." ??

I am amazed at the insensitivity of Mr Rohit Shetty, Mr Dhillin Mehta and SHREE ASHTAVINAYAK CINE VISION LTD- the entire team. There are more than 3-5 crore people, including children, who stammer and who may be mute too. How would they feel sitting through 2.5 hours of the comedy based on their disability? Are films made only for able bodied, "normal" people? Are films certified only for "normal" people and children? And if so, what will they learn from such a movie? that teasing people who stammer or who are mute, is okay? is acceptable?

Do we have rights less than dogs?