Stuttering Hub

The Tom Weidig Interview

Tom Weidig is host of the famous blog The Stuttering Brain. He is renowned for speaking his mind and is never one to shy away from controversy.

I caught up with Tom to find out more about about his blog, and to discover what he really does think about the state of scientific research into stammering...

What made you start The Stuttering Brain?

That is a good question, and I am not even 100% sure myself. How were the apostles able to write the correct history on Jesus decades afterwards? Here is the story my brain suggests: I was reading a physics blog called The Reference Frame, and I thought why not do the same for stuttering. Blogging appealingly bypasses the gate keepers of the stuttering community like the editors of a stuttering journal or magazine, conference organizer, trustees or influential professors. I was tired of convincing people who did not understand science well. I had interesting and different things to say about stuttering and did not want to tone down my message. I also wanted to promote real debate in stuttering research and new areas like brain imaging and genetics. There was a lack of critical review of research accessible to all, and I thought that I am able to judge research better than many.

Did you ever anticipate that The Stuttering Brain would become so popular?

To be honest, I did expect my blog to do well if only I could keep up the motivation of posting. Luckily, I found this motivation. Blogging gives me a kick and liberates me because I am not hold back by my stuttering. I love blogging. Why did I expect success? First I was the first blog which gave me the first mover advantage. Second, I had the ability to get news on-line quickly and knew that could get the news first due to my big network of contacts in all areas. Third, I tend to have the ability to catch people's attention for good or bad! Fourth, I felt that there was a real need for information, even researchers were badly informed about much research. There was no central place for news on stuttering.

What are your opinions about the stuttering research community?

There are very few really good scientists in the field. I guess stuttering is not as fashionable and cool as string theory, Alzheimer or AIDS. The result is that a lot of research is not very good and dead-end, and good debates are few. Moreover, the atmosphere is intellectually poisoned by therapists-turned-researchers, because they just don't get it due to their lack of rigorous scientific research training. Moreover, being therapists they live in a consensus-based and respect-everyone's-opinion world that is lethal for a healthy scientific debate. But they all mean well.

Do you feel they produce results that can really make a difference in the services available for people who stutter?

They have been researching for decades. Progress is very slow, but there are professional scientists coming into the field, especially in brain imaging and genetics.

As a scientist, I say that I am not interested in making a difference for people who stutter, but I am interested in asking and answering the Why question. If the byproduct is helping stutterers, that is fine. As a stutterer, I do not really care about why I stutter. I just want to get cured or helped and move on to more exciting stuff like black holes, quantum mechanics, neuroscience, finance and so on. So my ultimate goal really is to improve therapy in the selfish goal to help myself!

What changes, if any, do you think need to occur within the stuttering research community to help advance the field in a positive direction?

In physics, we say: Progress never comes with professors changing their opinions, but professors with old opinions dying out! So time is the key! And critical debate. I am amazed at how little debates there are at conferences. It is all about giving your talk and other given their talk but no real debate. I am very confident that the new
generation of researchers are soon taking over from the older professors, most of them not real scientists. Of course, some professors are really good scientists, but other are not but are very good at networking, spreading messages, and politics and thereby blocking the system and misteaching their students.

***

I would like to thank Tom for his time and wish him the best.

The Allan Tyrer Interview

Allan Tyrer is very well known figure in the stammering community. He is Editor of the quarterly British Stammering Association Speaking Out Magazine.

But what is life like for an Editor of a hugely popular magazine?

I asked Allan 3 questions...

1. What's been the most exciting story that you've wanted to share with BSA readers?

The Bercow Review on services for children with speech, language and communication needs, which recommended early intervention. If given therapy at the pre-school stage, children can have an excellent chance of completely overcoming their stammer. This means that putting systems in place to identify relevant children and give them therapy early enough has an amazing potential to noticeably reduce the number of people who stammer over the coming decades. Even more important perhaps is the Government’s Action Plan announced in December, which is in the upcoming (March 2009) issue of Speaking Out.

However, I don’t see Speaking Out as mainly about ‘exciting’ stories. I think more in terms of interesting, inspiring, new, helpful, important, sharing experience, giving a fresh perspective. Surprising articles are great too. In the last issue (Winter 2008) a blind person who stammers wrote about how she finds stammering much more difficult than being blind. The article got a mention in the Observer newspaper. There’s a pretty surprising article in the upcoming issue too…

2. How has the BSA Speaking Out magazine evolved during your time as editor?

I’m too closely involved with it to say. I’ll leave that to others to judge. I just try to make it as interesting and useful as I can.

Perhaps I’ve covered BSA events somewhat more than before, often through short pieces from several of those involved. The double page spread on early years of BSA, in the last issue, was also made up of short contributions. I’ve been pleased with these collections of pieces - and it’s a way for readers to get to know some of the other people involved with BSA.

That’s only a relatively small point though. It would be great to hear other people’s thoughts – and particularly any suggestions for further improvements (at@stammering.org).

3. As a person who stammers, do you feel you are able to reach out on a more personal level to your readers?

At one level my own experience takes a back seat. Speaking Out is about other people’s experiences. I did co-write an article for Speaking Out back in the 90’s about a personal development course I found very helpful. If I say something personal now though, it’s likely to be a bit in the editorial.

Even so, I think my experience as someone who stammers is important to editing the magazine. I hope it helps me relate to readers and contributors, in that we often (not always) share common experiences. Most readers are adults who stammer - though I’m also keen to include content for parents and therapists. I guess the fact that I have stammered all my life also gives me a particular interest in the subject, and in trying to make the magazine as good as it can be. The real quality of the magazine though comes from the people who write articles for it, for whom I have a huge appreciation.

I am often personally very interested in the articles I receive – which I think is a good thing. In editing, I may work with a contributor to clarify or perhaps expand on parts which I (and hopefully readers) want to know more about. At the same time, I don’t want the magazine only to reflect my own interests! I’m very aware that different people have different approaches to dealing with their stammer, and I try to have Speaking Out reflect that.

You can get Speaking Out by becoming a member of British Stammering Association. Those living outside the UK can also subscribe to the magazine.
www.stammering.org

Many thanks to Allan for his time and responses.

Interview with Monica Bray, Researcher, and Speech and Language Therapist

We have a distinguished guest feature in today's post. Monica Bray, a renowned speech and language professional with 21 years' research experience, who tells us about a recent project she carried out on telephone devices ...

1.  You have recently been carrying out research to investigate the effectiveness of a telephone assistive device for people who stammer. Could you please tell us a little about the project?

The project took place over a year. Nine people who stammer were recruited and agreed to record phone calls. Three calls per person were returned to me as well as three self-evaluation questionnaires. After two months another three calls were recorded (these six calls formed the base line). Individuals were then given a telephone device which has been developed by the makers of VoiceAmp.  It was attached to a corded phone and, when switched on, gave a delayed and frequency shifted feedback to the person who stammers. The participants recorded three more calls once they has the device and three to four months later recorded another three. At each recording, they also completed the qualitative questionnaire.

2. How has this research contributed to existing knowledge about speech and language therapy?

Results of the study were the frequency of stammers as well as the thoughts and feelings of the people involved. Results followed other studies on the use of assistive devices – while the group trend was positive, some people responded really well with both decreased stammering and increased confidence in making phone calls, while others showed little change. Two people did not like using the device and failed to complete all the phone calls. The qualitative comments showed that the majority of people felt the device was helpful in that it offered them some support during the difficult process of making a phone call.

3. How has this research contributed to providing better services for people who stammer?

This was the first step in the development of a device which might well prove useful to some people who stammer and who find the phone particularly difficult.  Much of the research in this area suggests that devices are likely to be more useful for very specific situations rather than as a general purpose aid. The developers need to do some work on it to make it more user-friendly and reliable before it can go on the market.

4. Do you have plans for any further research, either in this project, or in other studies?

I have no plans for continuing with this kind of research. My interest is mainly in the area of fluency and Down’s syndrome and I hope to be following up some work that I have started in this area in the future.

Thanks for asking me to participate in this.  All the best, Monica

This is a really fascinating research study. I personally find the area of electronic fluency devices very interesting...

Thank you very much to Monica for her responses. Best wishes to her as she applies her skills and knowledge in the area of Down's syndrome.

 

Interview with Gina Waggott, owner of Stuttering Chat

We have a fantastic person featuring in today's post. Gina Waggott, owner of the Stuttering Chat forum tells us about her experiences with running this massive support resource for people who stammer...

1. Stuttering Chat is one of the biggest self-help forums for people who stammer in the world. Has its popularity exceeded your expectations? If so, could you please tell us how?

StutteringChat was one of the first "egroups" about stuttering that didn't follow the old email-list format. The internet has come a long way since the group started, but then again everyone thought it was a good idea because email is "artificial fluency", in a way. When the group started I really had no idea of what to expect. Then the whole egroups system was bought out by Yahoo, so I knew that online-based communities were going to be increasingly popular. I remember thinking 300 members was good! At the last count I think we had 4100, which far exceeded anything I could have imagined. The same goes for the pure variety of nationalities and cultures that are represented. Naturally not all the members post messages, and the list is often used as a reference or reading point for many people. It's heartening to know that Speech Therapists also recommend the group as part of supportive self-help, too.

2. What inspired you to take ownership of Stuttering Chat?

My ownership came out of necessity rather than any particular ambition on my part. Several moderators have come and gone, and there came a point that if someone didn't step in to take the reins, the group would fold. I was at university at the time, had got a lot from the group and wanted to keep it going. Moderating the group has got easier as time goes on, though to try and keep the list spam-free, all new members have to be individually monitored, which means I have to sign on every day, and read almost every post. That said, I do enjoy it, I must be a masochist!

3. What has been the most rewarding aspect of running Stuttering Chat?

Without a doubt, the most rewarding thing is following people's progress and individual stories. The group is nine years old now, and it's allowed me to witness palpable changes in people as they struggle with this incredibly frustrating and often painful speech impairment. Over the course of weeks or months, someone's initial "cry for help" can turn into a "thank you for the support", which is very rewarding. I'm not talking about the quest for fluency but instead, in most cases, the group acts as a launch onto better self esteem, meeting others in the same boat, or having somewhere to vent. It's also been fantastic to meet some members in real life, outside the group, where I've made many good friends.

Many thanks to Gina for giving us an intriguing insight into what it has been like for her running Stuttering Chat. We are lucky to have such a committed and dedicated individual within our community.

Interview with Daniele Rossi, host of Stuttering Is Cool

Today's post features Daniele Rossi, host of the most coolest stuttering podcast show around - Stuttering is Cool.

Daniele answered the following questions I asked him...

1. What inspired you to start the Stuttering is Cool podcast show?

About a month before I came up with the idea of podcasting, I had just begun participating in forums and Facebook groups about stuttering. At the time, I was in a completely different place with my stuttering- I had always felt alone and was always trying to hide it. It felt great to finally be able to share my experiences with other stutterers and also to realize that stuttering was ok.

However, there was still something missing. I needed to hear other stutterers stutter. And I needed to stutter along with them. Openly and confidently.

At the same time, I also felt that I needed to meet other stutterers in person. I had no such luck. After all, there is no directory of stutterers in my city ;)

I was persistent and since I was already actively podcasting my other show, SpudCast, it was natural for me to think of starting up a podcast for my mission. A podcast where my fellow stutterers would hear each other by calling in or e-mailing an mp3 with their comments which I'd play on my show. 

2.Through your show, you have made it cool to stutter. How did you come about with this idea/concept?

From time to time, I'd run into a posting on the forums talking about how some women find stuttering attractive in men. Also, after meeting so many other people who share the same unique stuttering experiences as me, it was natural to start feeling good and positive about my stuttering. Especially after reading about stuttering being attractive!

The name 'Stuttering is Cool' is quite radical in itself as not all stutterers see their stutter in a positive light. The name is meant to promote acceptance and fellowship. It is meant to promote us stutterers as the great, talented people we all are! 

3. What have you enjoyed most about hosting the show?

Meeting other stutterers from around the world and hearing them stutter! It doesn't matter which country you're from, which language you speak, how old you are, or whatever. Stuttering is something unique that we share and instantly forms a special bond. 

It's an awesome experience each and every time I receive audio from a listener. Totally awesome. And I feel a little less alone each time. The Internet is truly the best thing to happen to us stutterers.

Many thanks to Daniele for sharing his own experiences with stuttering and telling us about his show. I'd also like to say a big thanks to him personally for his continued efforts to support and reach out to the stammering community through the Internet, and the use of social media.

Also to you single guys out there who stutter, you have heard it from the man - There are women out there who find guys who stutter attractive! So no more excuses!

Here's A Story Everyone Needs To Read

Have you ever heard or read a story that inspired you so much, that you just wanted to get up and take action?

I have. When I first heard the story of Martin Brough, a friend from the community. Martin is someone who has refused to let stammering control his life and has come out on top. His story is truely amazing and he very kindly agreed to share it with us.

Read on below...

1. When did you begin to stammer? What was it like for you at this time?

I can first recall starting stammering around the age of 14, although I can not remember stammering at school, I can at home.  My home life at this time was not very “relaxed”; my sister mimicked my stammer and called me names which did not help matters. My mother said I would “grow out of it”. I didn’t use the phone and my mother would talk for me when people asked me questions. In retrospect, I developed a covert stammer and found many situations difficult and begun to avoid them. Making or keeping friends was hard for me and my best friend was really a “compromise”, this was a lonely and difficult time.

2. When did you seek help for stammering? Do you feel it helped in anyway(s)?

At the age of 21, I sought help for my stammering and managed to get referred to a speech therapist. For me, speech therapy had no long-lasting benefits. The most useful part of the therapy was relaxation and learning different techniques.  I was told they had not seen someone with so much avoidance before, and I was still stammering and blocking severely. However, I do remember they reiterated that it is the content of speech that is important and not the way it's said! However through them I learned of the British Stammering Association and bought self-help books which helped greatly.

3. You have now a greater amount of fluency and confidence. How did you achieve this?

I was convinced something could be done and bought a book called 'Coping with Stammering' from the BSA. With sheer determination I worked through the book and discovered relaxation is a key part of fluency and fluent speech requires very little effort or thought.

Using the 'Coping with Stammering' book I read a relaxation routine onto tape, which I used on a regular basis when stress or anxiety was building up. This really helped me. Through relaxation techniques I learned to slow down my breathing and my heart rate. My breathing became smooth and not held upwards with tension as it used to be.

I also found that attitude is very important, my own and that of people around me. I tried to be positive and not to let anyone else belittle or obstruct my efforts, nothing I tried was a waste of time or too much effort. I learned to trust and have confidence in myself, and others as well.

With the telephone; I found that a combination of factors is required. I would not over-rehearse a call, nor avoid it. I wouldn't rush to phone or hold the handset too tightly. When pressing the numbers I'd say them as well, and would try not to hurry or let anyone else hurry me for that matter.

It helped not to think who I was calling or worry what they may or may not say as the person may not be there anyway. The use of steady or slightly slower speed of speech, gave me a great deal of control, for example "can-I-speak-to-David-please?" I tried to be patient and listen to what the other person is saying rather than butting in or talking over them.

I'd sometimes use a relaxation technique before the call and would watch for tension building up, for example shoulders becoming raised, or clenching the handset. The phone is just a tool for communication and should be enjoyed, and in some respects can be easier than talking to someone face to face.

I started off with calls to family and friends, to get more acclimatised to using the phone in a 'safe environment'. I recorded some calls and played them back so I could hear exactly how my speech sounded. I even used a mirror to look at the movement of my mouth, and help identify areas of tension which required improvement. Then I made slightly more demanding calls to people who I didn't know for practice, for example phoning for car insurance quotations. I kept a diary of all the success I achieved to remind me of it when any difficult patches came along.

As my confidence grew, I made calls with a real purpose. For example, I called a garage to ask how the repairs to my car were getting on. Making calls with an actual purpose did help increase my fluency greatly. One advantage of these types of calls, for example paying bills, is that they often just involve answering a set of pre-determined questions, which I found less stressful.

I stopped avoiding answering the phone and made it clear to my mother that I wished to answer the phone rather than her doing it for me, so I could have as much practice as possible. I even recorded the ring of my phone and played it back over and over again to enable me to acclimatise to it, as my heart rate and breathing used to dramatically increase when I heard the phone. I would also use light contacts and remember speech is on the outward breath.

Avoidance reduction was another key part to being more successful; and helped my feeling of tension or apprehension to decrease significantly. For example I stopped letting others ask for me in shops etc. Good eye contact, correct volume and body language were important factors in this type of communication. The more I practiced, the easier it became. I learned not to hide my stammer and would explain to people where appropriate that I stammered, to get it 'off my chest' as it were, as hiding the stammer led to more avoidance.

My fluency gradually improved over time, as did my confidence. This enabled me to make phone calls, ask in shops etc without stammering or avoiding any situations.

4. Do you have any general tips/advice for people struggling to deal with stammering?

To tackle stammering you have to take control of the situation yourself, nobody else can do this for you! Believe in yourself, be positive, keep trying and take the focus off your speech. I discovered stammering has actually very little to do with speech itself, which may sound like a strange thing to say! It has everything to do with the way you feel about it, speech is a natural process. 

Don’t be afraid to ask others for help; however it is for you to decide if this is suitable or effective for you. If one thing does not work move on, keep trying until you find something that works for you.  Have a can do attitude, never accept defeat and always search for answers.

Be positive!

Many thanks to Martin for telling us about his journey.

There are some real gold nuggets in what he says. Martin has displayed some great qualities such as courage, persistence, and not being afraid to think outside the box. All great things to overcome any major hurdle in life...

Interview with Tammy Davidson Thompson, Speech and Language Therapist

We have a special guest for today's post. Tammy Davidson Thompson gives us a fascinating insight into how she got into speech and language therapy, and what it's been like treating people who stammer.

Tammy also talks about some really exciting research she has been carrying out for her PhD in the stammering field, and gives some tips on how you can help yourself.

1.    How did you get into speech and language therapy?

My brother had specific language impairment and attention deficit disorder as a child, and so I was exposed to his speech therapy from a very early age. I initially did a Bachelor of Science degree majoring in Physiology, with sub-majors of Medical Biochemistry and Microbiology at the University of the Witwatersrand in South Africa. At the end of my degree I realised I really wanted to work clinically with people, so chose Speech and Language Therapy and Audiology after a number of my friends did the course, and I had some work experience in a number of different medical areas.

2.    What has your experiences been like in treating people who stammer?

I started working with people who stammer (PWS) while doing my SLT degree in 1997. Our university ran a SLT clinic and I saw PWS for both individual therapy as well as a three week residential intensive group program (The Successful Stuttering Management Program). I was struck by a number of things; how interesting and varied people who stammer are, how difficult it was to change your speech, that the people who were successful had to work on their speech constantly, and that relapse was more common that not. I also met some incredibly sad people who had been promised cures, who had been to faith healers, and effectively whose stammering had really affected their lives negatively. I came across a lot of people who felt powerless with regards to their stuttering and blamed themselves. Actually, it was the story of Dominic Barker, who took his own life and said that it was because of his stammer which made me decide to embark on a PhD.

I think one of the most influential clients I saw when I first started working in the NHS was a man who could communicate really effectively. He believed he was hiding his stammer completely by not speaking and avoiding situations and that if other people found out about his stammer he would lose his job and his friends. He finally disclosed his stammer to his friends and colleagues via an email questionnaire, and discovered that everyone already knew about his stammer, and they had no doubts about his competence. That email changed his whole life, he could be who he was, and that was where therapy ended for him- he didn't need to change his speech. For me that showed me that although speech modification and strategies for speech management are very important, stopping your speech difficulties from controlling your life might be even more important!

3.    Could you tell us a bit about the research you have been carrying out in the stammering field?

Well, when I started out doing a PhD (funded by the Dominic Barker Trust) there was a lot of recent research indicating that the cause of stammering was most probably neurological. This means that in many cases speech can be changed before the age of six years old, but it is much harder (but not completely impossible) to change your speech patterns when you are older. Other recent research showed that, in adults, social anxiety was associated with stammering. It seems that people who stammer are often mocked and bullied as they are growing up, and so they "fear negative evaluation" or others thinking of them as incompetent or stupid as a result of their speech. This can lead to them avoiding situations and restricting their lives. In psychology, social anxiety is treated with cognitive behaviour therapy (CBT).

There were a number of clinical trials looking at speech modification in adults but no clinical trials looking at targeting social anxiety in people who stutter. I thought I would like to do a clinical trial looking at how the psycho-social affects of stuttering are treated through speech therapy. This was a bit ambitious for a PhD! Clinical trials take years and are usually done by  big teams! Clinical trials for complex interventions are usually done as part of a five stage process. The first stage in the process is developing a protocol for the trial. My PhD has attempted to find best practice amongst the speech and language therapists (SLTs) working with adults who stutter in Britain to try to develop a protocol. I have tried to do this through an extensive questionnaire to SLTs. The questionnaire was 118 questions long and looked at assessment, client report, treatment, principles and techniques and evaluation and discharge criteria in therapy with adults who stutter. We received a 77% response rate, and were able to identify different groups of therapists who practiced in different ways with PWS.

The research seems to show a few things; SLTs seem to be recognising and working on the facets of social anxiety in therapy, and many seem to be using the principles of cognitive behaviour therapy, even if they haven't had CBT training.

It seems that specialist speech and language therapists (those who specialise in the area of stammering, who have post-qualification training and a special interest in stammering) offer significantly different therapy to generalist SLTs (those who see anyone who walks through the door). This potentially has implications for NHS funding.

4.    What are your future work and/or research plans in the stammering area?

Well at the moment I am writing up my thesis (about half way through) and writing papers for publication, while working for the NHS on a part time basis. It would be fantastic if I could continue working through the stages of developing clinical trials so we could see how effective best practice SLT is for adults who stammer.

5.    Do you have any general tips/advice for people struggling to deal with stammering?

The British Stammering Association is an excellent resource, and having a support system of people who understand what you have to deal with can really help you manage with your speech difficulties. If you are determined to change the way you speak, try to access an intensive group speech therapy course; research shows that this seems to be the most effective way of being able to change your speech.

If you are struggling with your speech and want to make some changes, try get a referral to a specialist dysfluency speech and language therapist. Often you can get this through your GP, but many SLT clinics have a self referral policy. If your local NHS Trust doesn't offer a specialist service, write to the Chief Executive asking why this service is not provided- until people do, the Trust won't change their system.

Remember changing anything in your life is a difficult process, and it works best with good support, challenge and help!

Useful links:

British Stammering Association: http://www.stammering.org/

The Dominic Barker Trust: http://www.dominicbarkertrust.org.uk/

University of East Anglia: http://www.uea.ac.uk/ahp

Many thanks to Tammy for answering my questions.

It is obvious that Tammy cares tremendously for the well-being of people who stammer, and her research has the potential to make a huge contribution to the stammering field, and getting the ball rolling for carrying out clinical trials that look into social anxiety in people who stammer.

Interview with Leys Geddes, Vice-Chair of the British Stammering Association

Today's post is a special interview with Leys Geddes, Vice-Chair of the British Stammering Association and campaigner for issues that affect people who stammer. Leys answered the questions I asked him below:

1. What inspired you to start campaigning for the stammering community?

I’ve always been aware of the prejudice, first at school and then in every other aspect of life.  The very least of the difficulties was that people laughed at me.  Then, at work, I was once fired for stammering and on three other occasions there was a strong movement to get me fired - but others stuck up for me and I survived.  But I’ve always liked talking to people and, as I am fortunate enough to have had a good education, I always had things I wanted to say.

I nearly took the quiet option, to become a copywriter in an advertising agency in London, but I just stopped myself in time, and applied successfully for the Shell Management Trainee Programme.  Since then I worked in a number of marketing agencies and consultancies, in management positions, and have simply had to talk.  So I have become accustomed to talking and stammering - and dealing with the consequences!  But, often, I must say, I have been very unhappy with my inability to express myself clearly and to assert myself in situations where there is potential conflict.  As a result of this, I may appear to be - and may actually be - a little aggressive!

I had always felt I should do something about this continual prejudice against stammering, because I could not control my speech at all times, never mind how hard I tried.  But many people still seemed to think that I was indecisive, weak and possibly even stupid.  So, when I joined the British Stammering Association, which was only a few years ago, I did so mainly because I wanted to learn more about stammering.  And I was particularly struck recently when research began to prove that our brains were different - and that this was the root cause of stammering.  Here, at last, was some proof that it was not our fault, nor our parents’ fault, and it made me even more determined to improve society’s understanding of stammering - and to try to right the wrongs to which we are subjected.

So I decided to speak out.

My marketing background helped me to see that most of the very few stammering stories which do get into the news tend to be about people who have had miraculous ‘cures’ or who, according to journalists, have the ‘strength of character’ to overcome their stammers.  This gives the unfortunate and inaccurate impression that stammering is no problem and we could all be cured if we simply pulled ourselves together.

So that’s why I think we need to put over a much more realistic view of stammering to the 99% of society which does not stammer.  If we could do this, it would make it easier for us all.  Maybe, we could then walk into a room of strangers and say ‘I stammer’ and everyone would be cool with that.  But we should not seek sympathy but, rather, we should be demonstrating that we are normal, sensible people, most of whom succeed in finding ways to overcome a constant series of hurdles in an effort to make the most of ourselves, our abilities and our potential contribution to society.

2. Do you feel you have reached a stage where the needs of the stammering community are being met?

No, we have made some progress, particularly in terms of discrimination laws and the very recent agreement by Government to introduce Early intervention, but we still have miles to go.

I look at the tremendous progress made by people with mobility disability.  But I also look at the 40 years that have gone past since the Black Power protest at the 1968 Olympics.  And I know from these two examples that it is possible to get your views and your cause accepted, if you work hard, but it takes a long, long time for society to change its views.

3. What is your main personal goal from your campaigning efforts?

To encourage other people who stammer to speak out.

Many thanks to Leys for sharing his fascinating and inspiring story on how he got into campaigning for people who stammer. If you like, you can find out more about Leys' efforts at the following links:

http://uk.youtube.com/watch?v=-epHaW8nTJQ

http://www.metacafe.com/watch/1284012/save_9_out_of_10_children_from_a_lifetime_of_stammering/

http://www.metacafe.com/watch/yt-myr8yCk0u0k/tell_us_the_truth_about_stammering_stuttering/

http://www.stammering.org/adverts.html

Interview with Peter Reitzes, co-host of StutterTalk.com

Friends, I have a special interview today with Peter Reitzes, which I think you'll find interesting. Peter co-hosts the famous StutterTalk podcast show with his colleagues Greg Snyder and Eric Jackson (http://stuttertalk.com/). Peter answered the following questions I asked him:

1. Has the popularity of StutterTalk as a podcast show exceeded your expectations? If so, could you please tell us how?

When we first started publishing StutterTalk about two years ago, we were averaging 10-20 downloads a day. Now we average several hundred a day. There have been times where we have had 700 downloads in a single day. Since StutterTalk began, about 4-5 other podcasts about stuttering have emerged – I don’t think we ever expected that level of support and recognition.

2. Can you tell us a bit about your experiences as being a person who stutters?

I have often said that I did not grow up stuttering, I grew up trying not to stutter. I was a covert stutterer until I was about 21 years old. Most people had no idea that I stuttered. I hid it really well until my “tricks” just didn’t work anymore. Towards the end, when I was really hitting rock bottom, I was acting in ways that must have seemed absurd to people. There was the time that my professor asked me where I was from and I did everything I could to not say “Delaware” because I knew I was going to stutter on it. I kept saying things like, “I am from a small state”, “I am from the first state” and “I am from a state that starts with the letter d.” I remember the look my professor gave me. Her look said, “This guy is really kind of a jerk.” But I wasn’t, I just was scared to death of stuttering. I don’t think I ever saw a future beyond my stuttering. Growing up, every choice I made was dependent on the possibility of stuttering.

And then one day I couldn’t take it anymore. I reached out for help and somehow, with a lot of luck, ended up finding a great speech therapist – Dr. Phillip Schneider. Phil helped change my life. He understood that covert stuttering was real and was not simply a “mild” form of stuttering. Phil had more faith in me then I had in myself. A lot of change and many good things happened with Phil. Stuttering became okay and being a person who stutters became okay. Being me was no longer bad. Knowing Phil has been one of the greatest gifts and greatest honors in my life.

3. Have your own experiences of stuttering contributed to your becoming a speech therapist?

One day, just weeks after meeting Phil, I knew that I was going to become a speech-language pathologist. I called my parents and told them. I remember my mother saying something like, “This is the best idea I can remember you having.” I knew that I wanted to have the impact on people’s lives that Phil had on me.

4. Are there any changes you would like to see happen in the stuttering  community?

I would love to see the self-help movement for people who stutter hit a renaissance of sorts. There are many fine groups doing lots of fine work, but it doesn’t feel as if the self-help conferences are growing or getting bigger. Getting several hundred people to attend a self-help conference is great, but shouldn’t our conferences for people who stutter number in the thousands by now? No one is to blame and I don’t have the answers, but I am thinking about it!
Thanks for inviting me to answer these questions.

Peter Reitzes, MA CCC-SLP

StutterNY.com

Adjunct Professor: Long Island University

Co-host: StutterTalk.com podcast and Stuttering101.com podcast

Co-editor: The Journal of Stuttering Therapy, Advocacy and Research
JournalofStuttering.com

Many thanks to Peter for sharing his experiences with StutterTalk, and his personal journey with stuttering.

Interview with Sachin from the Indian Stammering Association

I carried out an interview with Sachin from the Indian Stammering Association. Below are his responses to some questions I asked him.

1.What is your role at the Indian Stammering Association?

I am the Coordinator. Helped by Dr Akash Acharya (Asst Coordinator), I coordinate various activities public meetings, setting up Self Help-groups and a blog.

2.What activities are you involved in at the Indian Stammering Association?
These could be summarised as:

1. A regular TISA blog- where we put up relevant, reviewed and diverse articles, links, photos, stories etc.  (http://t-tisa.blogspot.com/)

2.Counseling and sharing of objective unbiased information through a Yahoo chat group and also through emails. Many of us are responding to many personal emails seeking guidance about stammering. (http://health.groups.yahoo.com/group/IndianPWS/)

3.Vishal Dadha, Asst Coordinator, Chennai Chapter of TISA recently set up a good example of self-advocacy by protesting about an ad with questionable content regarding stammering. We plan to take up more such issues. (http://t-tisa.blogspot.com/2008/11/thank-you-asci-and-vishal.html)

4.Promotion of self help movement across the country: Chennai, Surat, Pune and Mumbai, Herbertpur (Dehradun) are the five places where such groups are in different stages of evolution. (There could be more but not in our knowledge or not under TISA banner.)  A search of the TISA blog with these words will give you some idea of the successes and issues these groups have come across.

5.We have brought out a booklet on stammering both in Hindi and English (Twelve questions on Stammering and their answers). We are looking for people to translate and publish it in other Indian languages.(http://www.mountaindiary.frih.net/pages/hindi.pdf)(http://www.mountaindiary.frih.net/pages/english.pdf)

3.What other stammering initiatives are you involved in?

I am heading a public charitable trust- Samagra, which is working onstammering and hearing issues among children and others. Samagra is a founding member organization of TISA. (http://samagraindia.blogspot.com/)

4.What type of support is available for people who stammer in India?

Very little. Mostly in big cities and for a substantial fee. In schools, teachers do not know much about stammering (except stereotypes) and how to deal with a CWS.  Most teachers will ask CWS to desist from oral assignments (as an act of kindness). Family too, do not understand this mysterious disorder. Many CWS grow up as lonely individuals. Plight of girls who stutter is certainly worse - in a patriarchal society.

5.How long have you stammered personally?

From early childhood. In my teens I internalized it to such an extent that few, if any, realised that I stuttered. But I paid terrible price, emotionally and psychologically - now I realise. In my mid forties after a couple of events which forced me to accept that I was facing a problem, I confronted it and got down to deal with it squarely. My first response was - self exposure. Even now, I get blocks and mild stutters. Even now, I feel tense when I have to speak to a large group or in formal settings. But I have learned to deal with my emotions and accept myself as a PWS. This has certainly improved my speech and 'self perception'.

6.When did you decide to do something about your stammering?

While on an assignment as a consultant, I received feedback from my supervisor: Some of your syllables are not clear. This shook me badly because I felt that I had developed a near normal fluency and no one can find fault with my speech. Another similar event forced me out of my shell of denial and complacence. This happened when I was about 44 yrs. I consulted a Speech Therapist who gave me a very clear explanation of what happened when ever I spoke.. the switching of words, reorganizing phrases, always being worried about being found out as a 'stutterer' etc. I decided to give up such a life of chronic fear and started on a path of self therapy.

7.How have you coped with stammering?

I have learned a lot on the Internet, through books, and by talking to other PWS. Along with self exposure, I taught myself freezing, bouncing, prolonging and cognitive & affective skills. Here, my years of meditation practice came handy. An important event getting me going on this journey was a meeting with a saint. I shared my problem with him - and having told him, with his blessings, I felt as if I could talk to the whole world about my stammering without batting an eyelid. All this generated a lot of self acceptance. I no more punish myself, think any less of myself for those occasional moments when I do change a word, stutter or block.

8.What types of changes would you like to see in the stammering community in general?

People should learn more about the diversity (not just in speech and skin colour) among humans and be more accepting. Some PWS, especially covert PWS, are impatient and dismissive of other PWS. This is unfortunate. Also, as Gandhi said, true development is not about increasing your speed. As a society, we need to slow down and look at the content of our lives rather than its speed. Stuttering community should also learn about other rare disorders- like cluttering, albinism, Autism, Tourette etc. It will help them to realise that they are not alone in their struggle for more understanding and acceptance.

Thanks for this opportunity to communicate with your group and readers.
sachin

Many thanks to Sachin for his responses. Sachin can be contacted directly at satksri@gmail.com