Tuesday, December 23, 2008

Speakers at IFA 2009

The list of the key note speakers of the International Fluency Association (IFA) congress in Brazil in August 2009 is public: see here.

Claudia de Andrade: The familial profile of stuttering

(Department of Physiotherapy, Communication Sciences & Disorders and Occupational Therapy, University of Sao Paulo, Brazil)

Elizabeth Harrison: Technology in stuttering treatment for children and adults

(Department of Linguistics, Macquarie University, Sydney, Australia)

Luc De Nil: Multiple facets of stuttering: Insights from brain and behavioural research

(Department of Speech-Language Pathology, University of Toronto, Canada)

Suzana Jelcic Jaksic: Comparing the needs of consumers in developing and developed countries

(Children's Hospital, Zagreb, Croatia; ISA)

Registration for talks and seminars is February 28th, so you still have time to get your proposal done. I am not sure whether I will attend or not. It is a lot of money to go to Brazil, and I am self-financed. I probably decide in the last minute, as usual.

Luc de Nil is the only scientist talking. He is a professor in Canada and has done a lot of brain imaging research on stuttering. He will talk on brain and behavioural research. Certainly his brain research is interesting; his students and research staff currently look at dual tasks performance in stutterers. However, I am more sceptical on the recent research on temperament which he supervises; I hope he is not going in that direction in his talk. Then, we have Elizabeth Harrison talking on technology in treatment, which could be interesting. However, I hope she is not diverting to Lidcombe outcome research on which she worked and which she not convincingly defended in an on-line debate I recently had with Susan Block: see here.

Monday, December 15, 2008

Bad Google

According to Leys, google refuses to block adverts with cure promises for stuttering. Though having read his emails to google, he could maybe have been a bit more diplomatic:

Following various email exchanges over the last two weeks, Google have today announced that they will continue to allow advertisers to claim that they can cure or eliminate stammering.  For example, one current Google AdWords ad reads ‘Breakthrough cure takes 9 minutes - 100% guaranteed - eliminates cause’.

As the root cause of stammering is a neurological condition, it is not possible to 'cure' stammering, in the accepted medical sense of the word.  So, whenever they say this, Google advertisers give false hope to those who stammer, and give people who don't stammer the false impression that stammering can be cured very easily.

Respectable healthcare companies carry out independent trials on large numbers of people, over long periods of time before they are allowed to claim any kind of benefit for their products or services.  It should be the same with stammering.

Google AdWords have a general policy against what they describe as 'miracle cure' advertisements.  But, although they check the wording of ads submitted for ‘specific diseases such as cancer, AIDS, psoriasis, arthritis, fibromyalgia, cystic fibrosis, multiple sclerosis, leukaemia, bipolar and schizophrenia’, they do not do so for ads claiming to cure other conditions.  Thus ads which claim to cure stammering will still be approved to run.

Google say that their terms and conditions make it clear that all adverts must not violate any applicable law, regulation or code of practice (including the Committee of Advertising Practice Code in the UK, which is enforced by the Advertising Standards Authority).

These kinds of ads, however, clearly DO violate the UK CAP Code, because the ASA have already taken action successfully against one advertiser who was claiming to cure stammering - and is keen to act against others.

Unlike most advertising mediums, Google take no responsibility for the content of the advertising they feature.

Earlier today, I replied to Google, asking to arrange to speak directly to their Policy Team.

I then emailed the Stuttering Foundation of America and the NSA to let them know the situation.

I then reported Google to our Advertising Standards Authority.

I have also contacted various journalists who have been kind enough to support our campaigns in the past.

Friday, December 12, 2008

It started with a whistle

Apparently, Orangutans are able to whistle voluntarily leading to speculations that it is a precursor to speech and language: see here. Maybe early humans first started to whistle, associated a piece of information to a specific whistle, and created their within-group set of whistles. At some point, different whistles were combined to form sentences and language. First, speech was just whistles and all attention was on the whistle: so you have a thought you want to communicate and then you whistle it. Then speech production became more complex and thinking and speaking happened at the same time, leading to automization of speech. You do not have to focus on speaking but just think and it comes out automatically. And stuttering is a problem with this automatism. So first were the whistles, and when humans stopped whistling they started stuttering! ;-)  (Though, I have to admit that I am a bit puzzled why we don't still whistle our speech if the speculation is correct. We could do that, no? Maybe it is not possible to create as many different whistles as we are able in our human voice?)

Vancouver Film School Documentary

Check out this well-done documentary movie on stuttering by Vancouver Film School students through the following VFS production program:
Director Bruce Oothout
Director of Photography Shane Smith
Producer Youssef El-Khoury
Editor Raymund Santos

Thursday, December 11, 2008

Political correctness madness

A writes in response to my last post:
This is a horrible idea. It frustrates me to no end that people think that stuttering is something that you can "overcome". To add a competitive edge to it will make those who feel a great shame and pain about their stuttering feel even worse. The movement should be towards a greater acceptance of stuttering in the society. Not changing the stutterers to fit the society's expectations of "normal" speech.
A's statement is a good example of the political correctness madness that distorts current day thinking.

First of all, A asks for greater acceptance of stuttering in our society, when in fact he or she is not even able to give his or her real name but chose to remain anonymous! A puts me down for thinking the politically incorrect, when in fact I do a million times more about greater acceptance and transparency of stuttering by putting my life (including my stupid picture :-) and thoughts on the Internet. Everyone can read my blog including future clients or employers.

Second, I refuse the notion that we are helpless victims of a bad society that puts us down (blame-it-on-society syndrome) and creates the handicap that we experience. What non-sense! The vast majority of people only want to help us, but do not know how. In fact, we do not even know ourselves! Yes, there are some who might laugh or not be accepting of our handicap. So what? Is such behaviour so special? No it is a generic feature of humans. People (including and especially stutterers) laugh or are not accepting of all kinds of things: political attitudes (he is a neo-con republican), beliefs (he believes in the bible), weight (she is really fat), height (he is so small), beauty (she is really ugly), social status (she is white trailer trash), and so on. And yes there are discrimination in the job market. Why? Because stuttering does not help business. So we need to convince our employers that we have compensating strengths or that stuttering is not relevant to the specific job. The same is true for small people, dumb people, over-weight people, and so on.

Third, A seems to imply that somehow society creates stuttering. I say: Complete Delusion. Our genes and other influences have caused our stuttering in the first place with or without society. And we all feel a physical handicap with or without society. We cannot say what is on our mind all the time like a child without legs is restricted. It is not imposed by society, and it is physically experienced. Society reacts to the handicap, and its reaction is to 95% determined by our reaction to society! It reminds me of the talk shows with obese people who say things like "I want people to accept me how I am", "I am happy who I am", and "men find big women sexy", and of course it is society that makes us feel bad. Come on. The vast majority of men and women who are overweight hate it and want to be slim. Not because society wants them to (though it adds pressure), because they want to because you have restricted body movements, you are always out of breath, you have a very restricted sex life or none, diabetes and so on. They are deluding themselves: "I can't loose weight and now I just tell myself I actually feel good about how I am". I am not going to say that I feel good about stuttering, because I do not feel good about stuttering because I experience a physical handicap. What I can say is that I acknowledge that I stutter and that the propensity to stutter will stay with me for the rest of my life. And I also do not accept that I cannot improve my speech. I can if I work on it.

Fourth, the movement should not be about greater acceptance, but about greater knowledge about stuttering. I am not sure it is healthy for society to accept us like we are; should be accept overweight people to be overweight? I do not think so. We should help everyone with a handicap to improve as much as possible and educate others about the handicap, but how can I say something is OK when it is not OK. My speech is not OK, I cannot say what I really want to say. (If I only stutter slightly but say exactly what I want to say, then it is OK for me personally.) I am just deluding myself if I say it is OK. Not a single person in their right mind will listen to stuttered speech and say: Well that's OK even though they might publicly say so. I want them to think: "That's not OK, but it is not his fault. He is a person with strengths and weaknesses of which stuttering is one. I admire his courage to live life despite his handicap and if I can help him to improve, I will."

Wednesday, December 10, 2008

We need more competition!

Becoming more fluent is hard work over a longer period. You can also say that becoming fluent is like achieving mastery in a sport; the skill of controlling our propensity to stutter. How do you become a top tennis player at your local club? You need to be focused, live in the right environment, have spare time, be motivated, have a competitive spirit, some talent, receptive to coaching and ability to practise regularly and hard. For example, I am a strong tournament chess player and spent hours and hours playing chess. Much more than I ever spent on treatment. Is it no surprise that I am not a master in more fluent speech? Why did I not spend more time on stuttering? I would happily be the worst chess player ever for stable fluency.

I guess one reason is that the rules of chess are laid down. You know what you have to do to win, and you know what you have to study to become better. And most importantly, you have constant competition. Other people are challenging you, and I do not take it well when I loose after a hard fought hour-long game! It motivates me to get better and beat my opponent next time! And I know just how bad I am, and no therapist putting on a positive spin. In stuttering treatment, there is no competition. There is no declaration of a win or a loss; you have to make the judgment call.You have only yourself to fight against, or if you wish against the unknown enemy that makes you stutter.

Maybe we should establish a stuttering league where stutterers can compete against each other. In speech, reading and debate contests. We could also have a first-block-out competition. Two people are talking and the first who stutters looses. Another competition could be the-best-secondary-symptoms contest, but I guess that's a bit counter-productive. Well, we can just change it to the-best-simulated-secondary-symptoms contest, and that it is about voluntary stuttering. How about establishing a rating system? So if you win, you get extra points, and the more so the higher rated your opponent was. We could even have national teams that compete against each other. How about club names like Stuttering Sox, Stuttering United, Real Stuttering?

I tell you already you now. If you ever compete again me, you will loose! I am the best! ;-)

Tuesday, December 09, 2008

Connectionist modeling for stuttering?

I am currently doing a postgraduate Open University course on Exploring cognition: damaged brains and neural networks. The course explores two methodologies to study the brain: case studies on damaged brains, and connectionist modeling. We learn much more about the brain when it does not work properly as opposed to when it works well!

Think of your car. After any breakdown be it the battery or gears, you know much better how the damn thing really works! Or go back to the pain and handicap from your last toothache or back problems. Now you really know what and how teeth or backs do every single day. Stuttering is no different. A speech scientist should see the disorder as a blessing. Any scientist who claims to know how the brain speaks must be able to explain why the brain does not speak fluenty for some people. In fact, stuttering is key to understanding normal speech production. If we know why we stutter, we also know much more about the normal brain processes underlying speech and related activities.

The second methodology is connectionist modeling which models brain processes by constructing mathematical models that mimic features of networks of neurons and "injures" them to see the effects. I do not know of any group working on this topic in stuttering. I vaguely remember Pete Howell, professor at University College London, trying to get a group in connectional modelling to work on stuttering. The Boston group around Prof Guenther does mathematical modeling, especially his PhD student Oren Civier: see here. However, they use the differential equations approach which is a very different modeling technique. Ludo Max has worked on models together with them, but I think they agreed to disagree on the right approach. Within the research community their work is completely ignored, simply because no-one understand what they have done or are doing! It took me some time to understand what they have done, but I would need to play around with the equations myself to give good feedback on the usefulness of their models. My intuition tells me that the models are too simple to capture the essentials, and that even if a model reproduces the essentials of stuttering, it does not necessarily imply that it is implemented in the brain in this way.

Tuesday, December 02, 2008

Easier said than done: what makes someone implement change?

What makes someone change? Here, I might align myself with the soft thinking side of many therapists. Science says relatively little about what creates change in a person. I have seen this documentary on this slimmed-down woman who lost 30 kilos and has kept her new weight ever, for several years. The journalist asked her: So what has made you change? She said that she was on a hike and just couldn't make it up the hill without constant stops. And at that moment she swore to loose weight by keeping on walking up this hill every weekend until she can do it without stops. And she never stopped pushing herself, and her weight dropped slowly. She also said that it was not about the diet because any sensible diet will work: eating a bit less, a bit more healthy, and exercise more and keeping it at this pace for ever will do the job.

What creates such a moment that sets in motion such a change? I am not sure. But it is not about that moment. That moment is only the start, the first spark. If you do not have the dried-out land with a hill next door, hiking- friendly social setting, competitive attitudes, friends with similar aims, no life-changing events like death of partner, the right genes, the ability to change quickly, right personality traits, and tools like sensible diet, the spark cannot live on and create a fire. You cannot model such behaviour in a sensible way in the same way as it is difficult to predict revolutions, wars or economies. 

So how can you as a therapist induce change? I have no clue. I fear that the answer is that they cannot. Maybe induce the spark, for who is not excited about starting a potentially life-changing treatment. But will it light the fire? Only the patient can. But actually not even the patient can. The time and place must be the right one. And then the right spark at the right time will light it up. However, therapists can help in that they create treatment that requires as little change as possible to be successful. Like a pharmaceutical treatment. Or improved behavioural therapies.

Monday, December 01, 2008

Therapy is an implementation issue

How do you win the 100 meters? Run faster. How do you become slim? Eat less. How do you pass an exam next time? Study more. How do you stutter less? Speak slower, avoid secondary symptoms and make more pauses. The issue is not in that we do not know what to do, but in us not being able to implement what we should do.