Thursday, October 22, 2009

Tageblatt interview in English

I am still amazed at the power of blogging. A reader, Ora, was willing to translate my interview into English:

Conversation with the researcher and “Stuttering Expert” Dr. Tom Weidig in the Context of World Stuttering Day

Fanta Instead of Cola and Emails Instead of Telephone
By Luc Laboulle
From Luxembourg Tageblatt – Wednesday, 21 October 2009.
(Translated by Ora McCreary)



Tageglatt: First perhaps a clarification of terms. How does one say stuttering in Luxembourgish: “tuddelen” or “stotteren”?

Tom Weidig: I find the word “tuddelen”, from personal experience, very, very bad. Above all because it occurs in the expression “Du dommen Tuddeler” [you dumb stutterer}. Therefore I prefer to speak of “stotteren”. “Tuddelen” is of course the correct word in Luxemburgisch, but for me, and also for numerous other people who stutter, it has many negative connotations. I think “stuttering” is more neutral, more matter-of-fact. Although Allain Atten [Luxembourg author and historian] would perhaps prefer to say “tuddelen” (laughs).

“T”: For what reasons do people stutter?
T.W.: Until now it’s been known that on the one hand stuttering is often genetically related, while on the other hand something in the brain does not function “optimally”. The big problem of people who stutter consists of the fact that they know precisely what they want to say, but they just can’t get out the word or the sentence. This naturally increases the pressure on the stutterer enormously, since the reaction of the others often consists of laughing or saying something, and thus for the most part the stuttering becomes worse. The affected person thinks, “OK, if people laugh at me, I’m not going to say anything at all”. And then the situation becomes even worse. Actually one can distinguish between two things. One is a neurobiological dysfunction, which then is aggravated by psychological components. That is the theory that most scientists hold today.

“T”: It’s predominantly men who stutter?
T.W.: The proportion of women to men to five. For most developmental disorders one can comfortably say that.

“T”: And are there different forms or characteristics of stuttering?
T.W.: Of the five percent of people who stutter in childhood, four percent become entirely normal in the course of their lifetime. The rest stutter their entire life.

A further point is that some people stutter openly. They speak a lot even though they stutter. Sometimes people think that a person behaves strangely because they never say anything. In many cases this is a person who’s afraid of speaking because they stutter. Paradoxically there are people who appear to speak normally, although they actually stutter, but they try to speak so that no one notices it.

There are also cases in which people, predominantly later in life, begin to stutter after an accident or a stroke. But that’s something different. As a general rule, people begin to stutter at an age of three years.

“T”: Is stuttering predominantly genetic or learned?
T.W. There are families in Pakistan and Cameroon in which everyone stutters. Imagine the family gatherings (laughs). Probably it’s like breast cancer. If a woman has someone in her family who has breast cancer, the probability is high that she’ll get breast cancer herself. It’s not 100 percent genetic, but in many people there’s a genetic component. However, environmental factors such as premature birth, virus infection, or a blow on the head can also induce stuttering.

“T”: What concrete problems confront stutterers in their daily life? What was most difficult for you personally?
T.W.: The first fundamental problem is that they know exactly what they want to say, but they can’t say it. What’s more, they don’t know exactly when they won’t be able to say something. Sometimes things are working and they can speak normally, but then suddenly, from one moment to the next, they can’t say anything more.

In school I was laughed at, and often said nothing more after that because I didn’t want to attract attention. For example, as a child I often drank Fanta instead of cola, even though I preferred cola. I just didn’t want people to notice that I stuttered – which actually was ridiculous because everyone around me already knew that I stuttered. So I could just as well have ordered c-c-cola.

A further problem can present itself in looking for a job. Employers will ask whether a person can do a job at all because of their stuttering. Or people say someone stutters because they have psychological problems, that they’re anxious and frightened. But I have no more fear than other people.

In addition there are many people who in fact don’t stutter, but who communicate much worse, who are dull and not witty. I’m a member of Toastmasters International, an association for the advancement of the art of public speaking, with 100,000 members. Twice I gave the best speech and represented Luxembourg. My speech was not so fluent, but in exchange, was better than those of others.

“T”: Is stuttering a disease and is it curable?
T.W.: An “ordinary” disease is, as a rule, curable. But for stuttering, one usually speaks of a chronic disorder. The problem is probably a neurobiological instability. One can imagine this as being like a highway with only one instead of two lanes. We often have a traffic jam in our brain, so to say. In principle it can’t be changed, so we just have to live with it.

What one can do is to try to deal with the secondary symptoms. Speak slower, or insert more pauses – which I’m not doing at the moment (laughs).

Through concentration and hard work on oneself one can speak more fluently. This possibility exists, but it’s similar to a diet. It’s not hard to keep to a diet for a month and lose five kilos. It’s harder to maintain your ideal weight for a year or even over a lifetime.

Just the same problem exists with stuttering therapy. One can practice slow and focused speech and become more fluent. But when something unforeseen occurs, it can quickly happen that one falls back into familiar behaviors.

With therapy I’m actually only trying to control the neurobiological problem through newly learned behavior. There are people who work extremely hard, and then don’t stutter at all. Then they practice six months for up to three hours a day and really try to get the problem under control. As with every behavioral therapy, relapses are common. For that reason one should have no faith in therapies that are presented by Jauch or Kerner and promise quick cures. That’s generally nonsense. If one were to look at the people who were appeared cured after treatment, and return to them a year later, I’m almost certain that their condition would be quite different.

In the meantime there is also hope for alleviation of stuttering through medications. The drug pagoclone is now being tested in 300 stutterers.


“T”: Over time, does stuttering become part of the personal identity of a person, so that one simply thinks…

T.W.: … who cares, right? Naturally. Some people just think: “I’ll just speak, I don’t care, it’s others who have to listen to me, and not me myself.” A person can do that, and that helps enormously. There are people who don’t stutter much. It may be only once or twice a day that they can’t get a word out. But they may suffer more than I do – I who often stutter and who give interviews to the Tageblatt, which everyone reads and where afterward everyone can say: “He there, he stutters.”

But there are people who for their entire lives thinking: “OK, I have to go now to the baker, but I’ll have to speak there. I’d prefer to send my daughter. That way I don’t need to stutter, and no one will think me stupid.” Or instead of telephoning, they send an email. Seen from that perspective emails are perfect for stutterers.

Some people arrange everything so that no one finds out that they stutter, that they’re abnormal. Others say: “I don’t care. That’s the way I am, and good.” The best is probably to find a position somewhere in between.

“T”: Should stutterers attend a special school?

T.W.: I was taken out of kindergarten and put into a special school. I hated that, just as the statements of so-called experts. As a general rule, kids who stutter have no problem besides the fact that they sometimes have difficulties getting words out. Apart from that, they exhibit the same psychological and intellectual profile as all others. Hundreds of studies have demonstrated that. But they have to live with the consequences of their stuttering. As teenagers they possibly have more problems than many others. Just because they are more often bullied and laughed at.

The same thing also happens to kids who are 15 kilos overweight. They too have to live with their fate. For this reason I advocate public school. It’s only regrettable that in Luxembourg there are no speech-language pathologists who are experts in stuttering. We only have speech-language pathologists who deal with 30 or 40 speech disorders. But stuttering is a syndrome quite different from most “language and speech disorders”.

“T”: What facilities are there for stutterers in Luxembourg?

T.W.: Where children are concerned, I would counsel parents to go to a doctor or a speech-language pathologist to check whether the children have other problems in addition to stuttering. It might be, for example, that dyslexia is the trigger for their stuttering.

Such children stutter perhaps when reading, because they don’t know what they’re reading. Those who stutter, on the contrary, understand what they’re reading, but they can’t articulate it.
When the child in reality only stutters, and has no other problems, they should look for a speech-language pathologist who has a special competence in the field of stuttering.
They should ask whether the speech-language pathologist has participated in a workshop or a conference on stuttering. For adults, there are intensive therapies which extend over two or three weeks. There are none in Luxembourg, but there are some in Germany, France, Belgium and the Netherlands.
I myself have participated in many conferences, and also have given lectures on this topic. But I’ve never met anyone from Luxembourg at these conferences, and have never heard of any speech-language pathologist from Luxembourg who works seriously with stuttering. To my knowledge, there are no Luxembourg speech-language pathologists who specialize in stuttering.  
“T”: You’re very involved with this field. Have you never thought of founding an association or a interest group?
T.W.: About 10 years ago there was a self-help group “Schwätzen ouni Angscht” [“Chatter Without Fear”], which was led by Frank Reimen. For professional reasons he discontinued it, and since then there’s been nothing at all in this field. I, for my part, meet from time to time with others, But because of my internet blog and my numerous conferences I have no time left for other things.
If someone were to start a group, I’d be glad to serve as an advisor, but at the moment I just have no time to take care of administrative issues. Maybe I’ll do that when I’m 50. Now I’m having more fun with my blog, because I can discuss science, and reach more people throughout the whole world. I’m doing it at no charge, but I do have a “donation button” on my blog.
 

Profile: Blogging Jack-of-All-Trades

Dr. Tom Weidig, born in 1972, earned his Master of Science degree at Imperial College in London, and his Ph.D. in theoretical particle physics at the University of Durham (UK). After receiving his Ph.D. he was researcher at the University of Manchester, and guest researcher at Trinity College at the University of Cambridge. After that he moved into the field of finance, where he worked in risk management at the investment bank Bear Stearns and the European Investment Fund. He authored a book about risk capital funds and now works as an independent consultant in this field. He has taken course in neuroscience, and is now writing a book, together with Dr Gilles Michaux, about a concrete biosocial model, which, among other things, allows a better understanding of the many dimensions of stuttering.

Additionally Tom regularly speaks at conferences and workshops on the topic of stuttering, and writes his internet blog “The Stuttering Brain”, with more than 750 posts in four years, and an average of 1000 visitors weekly (http://www.thestutteringbrain.blogspot.com) He was on the board of the British Stammering Association, as well as chairman of the research committee, and worked on a study of stuttering therapy at the University of Kassel.

1 comment:

Hugo said...

Tom, would you allow me to translate into Portuguese?