Friday, September 30, 2005

Wendell Johnson's "Monster Study"

I just found this article on a University of Iowa stuttering experiment performed on orphans in the 1930s.

I've never heard of this before, but kids were apparently taken from the state orphanage and entered into this experiment where they were "badgered and harangued" by researchers hoping to make them stutter. Some became chronic stutterers and/or developed psychological issues.

The subjects didn't find out about it until they were seniors and are now trying to sue. The supreme court just ruled 4-3 against immunity for the state.

Four things immediately spring to mind:
1. How can the means possibly justify the ends when people’s lives are at state?
2. Parents are the only people who will keep their kids safe.
3. Who were the 3 Justices who felt the victims should not be allowed to sue?
4. And finally .. you guessed it ... What an a$$hole!

The Washington Post article is at : Court Keeps Stuttering Study Lawsuit Alive

But wait, this runs completely contrary to my personal experience with speech pathologists. I've never met one who has not come across as an extremely caring individual. And hey, lets face it, speech therapy is not exactly the kind of job you end up in by accident because you couldn't get a "real" job. Personally I feel a strong interest in helping stutters is necessary.

So after a my initial anger, I did a bit more reading and found that Wendell Johnson stuttered himself. Well now ... that doesn't make sense. I can't imagine anybody with this problem wishing it on somebody else.

Was this article biased because the writer did not do adequate research? Or was there an agenda to cause an emotional response to sell papers? Or was it true and the study a misguided effort? Or was he really an a$$****?

I found this article, which appears to indicate that it was a misguided effort and possibly a study which every participant regretted. The Stuttering Doctor's 'Monster Study'

At the end of the day, it's just a tragic shame!

Here are a couple other search links you start your own research from.

University of Iowa website search : Search

Google : Search


Not meant as advice, please find a qualified therapist if you are interested in similar therapy.

Career limitations

Sorry it took me so long to write my first post this week. I’m working hard to meet a deadline, which just happens to be the Friday before my therapy starts. This is great, as it will allow me to focus on my therapy after the deadline.

Speaking of work, stuttering has greatly affected my career. It has limited my career choices, prospective employers, and responsibilities I am able to perform effectively.

Programming was not my first career choice and it isn’t my passion. Don’t get me wrong, I enjoy it and think I am pretty good at it, but I don’t lust after it, like I do with other passions. More on that later.

My first career choice was plumbing, which is mentioned mostly for accuracy. I graduated community college in 1990, at the end of a boom cycle and beginning of a recession. Due to a lack of work in my trade, I eventually returned to the part time factory job I had as a teenager and my speech slid into total disfluency.

At this point I was in my early 20s, and when I opened my mouth, I would block and my mouth would stay open as long as I tried to push the words out. Since I was pretty stubborn, this was usually for very long stretches of time.

At this point in my very limited career, my speech didn’t hamper me too much. There were managers in the factory I was working at who, I believe, considered me pathetic and wouldn’t give me any work. I didn’t consider this a discriminating action based on my speech problem, but more of a personal incompatibility … based on my speech problem. Fortunately, there were enough managers who considered it irrelevant.

I really felt the limitation when I discovered the securities markets … my passion. To make a long story short; an initial nudge from a friend, caused a curiosity to snowball into an obsession with me consuming well over 100 books within the next year. I could easily recite the price history of about 50 currencies and commodities going back 30 years, and the Dow Jones Industrial Index back to 1890.

I knew what I wanted to do with my life and knew I would be good at it.

But this was before the internet, and a job in the securities markets meant a full day on the telephone. This is the equivalent of taking a passionate marathon runner and cutting his legs off after a year of training and just before the race. It just is not realistic.

There was one long shot; I could move to Chicago, buy a seat for US$350,000 on the CBOT or CME … wait … no … I could lease a seat for US$3,500/month, put up the minimum US$50,000 into my trading account and hope I could trade primarily with the hand signals. All this plus basic living costs while I got off the ground.

As if that isn’t difficult enough; I would need to pass a speech test to get access to the trading floor! That’s right; in an open outcry market, you need to pass a speech test before they will allow you to trade.

Would it have been different if the internet was available then? Would I have been able to get into my chosen career? It’s hard to say .. at first glance is sounds like I could have, but the reality of it is, with all the information and mis-information, I could have easily been led astray.

I have since restrained my passion and locked it away into the recesses of my mind. When I try to access it as a part time hobby, it quickly consumes my mind and starts to interfere with concentrating on my day job as a software developer.

So how did I get into programming? Why did I chose programming?

Well I chose programming because; a) the demand situation was strong which was important to me after my stalled plumbing career. And b) I was under the impression programmers sat in front of their computers all day long, and never need to utter a single word!

But the choice of programming has not limited the ability for my speech to interfere with my career. I can’t get interviews because once somebody hears me on the telephone it’s game over. Head hunters call and hang up when they hear me. I’ve called a few back in a non-confrontational way, and they talk to me until they can safely get me off the phone. Some head-hunters are honest and tell me they cannot send me to their clients with my telephone mannerisms … this may sound bad, but these are the only recruiters I have liked so far.

One time a recruiter called and spoke to my wife, since I was out. She was practically begging my wife for me to call because she needed somebody sooo badly. I came in right after she got off the phone. My wife was pretty excited about it, but I knew what was going to happen. When I called back the recruiter told me the job was filled. I basically said “Are you telling me, all the interview stages have been completed, a candidate was selected, an offer was made, and the offer accepted … all within the last 5 minutes?” She said “Yes”.

In 11 years, in the hottest career around, recruiters have sent me on 2 interviews. Both of these interviews were arranged via email, where the recruiter and I never spoke. I’m the black plague for recruiters.

I can kind of understand their dilema though; the relationship with their client is based on the relationship the client has with the consultant. If the client doesn’t like or feels uncomfortable with the consultant, the recruiter will lose not only that contract, but possibly other contracts existing or future. The recruiter must be very sensitive to this, and also needs to account for any misgivings or character flaws the client has. For example; if a recruiter sends me on a contract where the manager has a self esteem issue, he may feel, having me look like a fool in front of his superiors, adversely reflects on him.

For what it's worth, I've pretty much given up looking for a job. Personally, for me, it just seems so random, with no real cause-effect relationship. I feel my time would be better spent looking for more clients of my own. By the way, if you need a web application or eform system, a link to my professional page is on the side bar.

There are other problems in programming that I have trouble getting around. Despite the stereotypes, programmers do have to talk to people, some times on the phone. You need to handle technical support for your software, speak to clients (or you companies clients) about requirements, etc …

Other problems I have include the fact that some people just don’t understand me. Even when I’m talking face to face. And when there is a misunderstanding on my part, or any kind of ambiguity, I sometimes do not make the effort to resolve it that I should.

Don’t get me wrong, my speech isn’t my only career problem. I am human and have personal weaknesses and challenges. But the biggest career barrier I have is my speech.


Not meant as advice, please find a qualified therapist if you are interested in similar therapy.

Thursday, September 22, 2005

Is stuttering a disability?

Am I disabled?

Depends who you talk to. If you ask me, it will depend a lot on my mood. Ask me after I go 6 months without a job interview, because I can’t get past the initial phone call, then I may answer “Yes”. But ask me after I’ve been working for a year, and I would never consider myself disabled.

Personally, when I think of somebody with a disability, I think of a wheelchair, crutches, blindness, etc…. I don’t feel that bad off, and even if I did; I could never openly confess it without being ridiculed by everyone in listening distance.

I mean; I’ve got all 5 senses don’t I? I can See, Hear, Smell, Taste, and Touch. I don’t look disabled to anybody walking down the street. I’m mentally capable of finishing a book without pictures. In fact; I’m pretty much normal until I open my mouth.

How could I possibly insinuate people with “real” disabilities, are no worse off than myself?

How can I feel comfortable with this?

During my life, the occasional person would imply; my speech problem is a disability. I’ve always rebuffed this notion and never gave it much credibility. There have been sporadic HR follow up forms, after applying for a job, asking me all the illegal questions, like if I was a single mother, disabled, or a minority. If I was hungry enough for the job, then I might check off the disability box hoping Affirmative Action would give me an advantage.

It wasn’t until last summer, when I had been on unemployment for a couple months, and they kept insisting that I go to a disabilities program. At first I refused, but it’s not always wise to keep refusing somebody giving you money, so eventually, I went. I felt like a fraud going without a “real” disability. To my surprise; I had the most obvious disability in the group!

It was then, I started to give the notion of having a disability serious consideration. In retrospect, it may sound foolish to anybody reading this, that I didn’t consider it a disability … I mean; I/it definitely fit the definition:
Disabled
Disability

Up until that point, I felt it was just a quirk, like being left-handed. But the more I started to accept the idea, that it “is” a disability, the better I felt! Maybe I’m not a loser who can’t find a job, or work anywhere coworkers expect ringing telephones to be answered! Maybe I’m doing damn good being employed 75% of the time!

Holy smokes! What a concept! I’m NOT a loser … how about that …

But wait! Am I taking the weakling approach? Am I not accepting responsibility for my life? Am I rejecting blame for events where a half-hearted effort would pull me through? Am I using “Disability” as a crutch?

Honestly, I still haven’t gotten my head around it.

Speaking of disabilities; there have been a few times where somebody might say; “Well at least you don’t have a serious disability .. you’re not in a wheelchair or anything”. And they would be taken back when I didn’t immediately agree. They would go on a rant about how bad it would be, then I’d say something like “Well think about it, if I had that instead, I could speak on the telephone and get a job doing what I love .. I might be more successful and probably happier.”

Would I be trade my speech problem in for another disability if it were possible? No. But it’s not the immediate “Heck NO!” that you might expect … the notion is pondered first.


Not meant as advice, please find a qualified therapist if you are interested in similar therapy.

Monday, September 19, 2005

Similar articles on stuttering

A comment on my last post, pointed me to Rob Bloom's website. He's got a couple of great articles about his stutter. I wanted to share them since they are very similar to my feelings.

Blocking the fear out
I'm not hiding anymore
You think YOU'RE afraid of public speaking?


Not meant as advice, please find a qualified therapist if you are interested in similar therapy.

Effects upon my family roles

My roles with my family and how my speech problem has effected it :

Husband

The fact that I am married with a family amazes me … even now.

My wife can walk away from this problem at any time, but she’s been a willing participant for the past 12 years. She doesn’t need to put up with my procrastinating and/or neglect of anything requiring a phone call. She doesn’t need to put up with embarrassing moments in public or thoughts her friends plausibly have that she has a defective husband. I don’t know if I could be as noble as her.

Growing up, I always wondered if I would ever / could ever get past this in a relationship situation. I mean really; who would volunteer for such a role? And would I want to be with anybody who would have me? Or I would end up a bachelor into my old age because I couldn’t get a date? Don’t get me wrong, there’s nothing wrong with bachelorhood, and there are times I miss the solitude. But I’ve got to hand it to my wife, she’s a strong woman.

Father

Fatherhood is another role I couldn’t imagine myself in. How can I be a good role model for my kids? If they wander into immediate danger, will I be able to call out to warn them? Will I be able to guide them when they need it? When they realize there is something wrong with me, what will they think? Will they be embarrassed? Will their friends mock them? Will parents not want their kids at my house playing my kids because they think I’m a freak?

Many of these questions have already been answered with my 16 year old step daughter. I’m sure she’s embarrassed of me since she’s a teen and really; what teen isn’t embarrassed of their parents? But I don’t know if she’s embarrassed of my speech problem. I do know, she has been mocked by her friends and peer group, but if it embarrassed her, she’s never given any indication.

My speech problem has interfered a bit with my 3 year old son. One thing that really bothers me is reading to him. I am a big fan of education, not formal education per se, but seeking answers to your questions, assimilating knowledge, understanding the implications, and asking new questions. To me, the most reliable path to an educated mind is via books. Books are focused, specialized, and accurate (for the most part).

So obviously I want my son to have a good association with learning and books … before our formal education system, his peers, and the entertainment industry get a hold of him. However, when I read to him, it’s agonizing! When I finish; I’m exhausted and my chest hurts. I’ve neglected it in the past because of this, and he’s gone from asking me to read him books to asking me to turn the TV on. I’ve recently started reading to him again even if it is agonizing.

Sometimes I will block in front of other kids and they will stare it me in horror and disgust … seriously … I’m not exaggerating at all. So far, my son has not witnessed their reaction to me .. hopefully he never will.

Another way my speech problem has limited me with my 3 year old son is that I sometimes can’t tell him to stop doing things right away. He needs immediate feedback, and he’s not getting it from me.

Fortunately (unfortunately?), fathering is so bloody difficult that my stutter is trivial. ;-)

Son

My parents, as most people really didn’t understand my speech problem and as you would expect they were frustrated by it.

The fact that fluency is random only confused them more. When I was about 8 or 9, I caught my first fish. Because fresh water fishing in the area I come from doesn’t yield a lot of fish, combined with the fact that I suck at fishing; I had been fishing for years without catching anything. So when I finally caught my first fish, I ran up the hill to my parents screaming that I caught a fish. They congratulated me, set me up for a picture, the small fish turned so the narrowest side was facing the camera, and we got a picture of me holding up what looks like a baited fishing rod with a big grin on my face. (I’ll try to get a copy posted before the blog is over)

This fishing story is relevant because I spoke fluently between the time I caught the fish, and the time the picture was taken. The fluency was logically determined to be proof that I didn’t really have a problem at all and that I had better stop it immediately.

This logic is not that unusual and is repeated constantly. Here are a couple Usenet conversations regarding a Howard Stern regular :
JOHN THE STUTTERER DOESN'T STUTTER!
John The Stutterer Doesn't

When I was about 13, my mother sat down with me, and we had a long talk. She expressed their concerns that stuttering as an adult could ruin my life. Then she tried to bribe me and told me that if I would stop stuttering until the end of the school year, she would buy me a 10 speed bike. I was pretty excited about the bribe and decided to stop stuttering. My excitement eventually led to disappointment, and the bribe was never mentioned again.

If she doesn’t remember the deadline, I will try to get my 10 speed upon my PFSP completion. ;-)

My father had a very difficult time dealing with it, especially based on the logical proof that I did not need to stutter as discussed in the fishing example. Among other things the fact that nobody would ever hire somebody who couldn’t talk was constantly brought up. I was constantly told all the harsh things employers would say regarding hiring me, and most people wouldn’t even want to work with me. He wasn’t really too far off. In certain situations he was dead on accurate in what he said … I mean, I’m not (usually) spoken to as harshly as he indicated, but 30 years of discrimination laws probably has more to do with rephrasing it than anything else.

Don’t get me wrong, my parents are good people, but this has been confusing and frustrating for them.

Brother

To the best of my knowledge, my speech problem with regards to my sisters has been minimal. Even in high school when peer groups mean the most and will mock you for anything; because of my ability to pretty much hide my problem throughout high school I don’t believe they have ever been affected by it.

I also cannot remember any specific speech related event involving my sisters.

Grandson

I’ve always been very close to my Grandmother, closer than anybody else. After I moved to Toronto, even with my speech problem and telephone avoidance, I would call her a few times a month. In 2000, she had an accident and ended up in the hospital for about a month and finally in a nursing home. I attempted to call her in the hospital, but because of her state, difficulty getting through switchboard with my speech, etc… I didn’t feel my phone calls were helpful and may have even caused her stress. I finally stopped calling her.

Similarly with my Grandfather, after he went to a home, I found communication with him difficult.

Nephew

Once I called my Aunt out of the blue without having spoken to her for years. I was stuttering like a maniac, and she was patient trying to figure out what I wanted. Finally I said her name … well that changed the tone completely … it scared the heck out of her. She demanded to know who I was and what I wanted, and I couldn’t get anything else out! The longer I blocked, the worse she was getting! Finally, I said who I was, and it was fine, but the beginning of the conversation was high stress.

I find it very difficult to call Aunts & Uncles, even when the situation warrants it.

Observation

I don’t feel that I communicate effectively especially over the phone. They say 90% of communication is non verbal, which sounds good for me, but the 90% of communication over the phone is tonality. Something, I have almost no control over and nobody can interpret.

An observation I have just made while thinking about Grandparents, Aunts, and Uncles; my ability to communicate effectively with people seems to be directly related to the frequency in which we speak. In other words, when I don't see somebody for a while, communication becomes increasingly more difficult.


Not meant as advice, please find a qualified therapist if you are interested in similar therapy.

Monday, September 12, 2005

Transcript – Introduction video

Hi,

I have recorded and posted a short video of me talking about how my stutter has evolved over my lifetime. It is available at
http://www.johnmacintyre.ca/putt.asp#intro

I've posted the transcript below.

In the video I discuss how "What's your name?" is a dreaded question by people with speech problems. The reason the name question is so potent, is because with almost anything else, you can shrug, to say “I don’t know” … but you can’t exactly do that with your name now can you. ;-)

The video is kind of embarrassing. It's been a while since I've seem myself on video and I forgot how bad I am. I wasn't even sure if I should post it, but I figure it isn't exactly a secret, I mean the staff at Tim Horton's sees this from me every single day.

Some of the things I reveal in this blog will be personal and embarrassing by their very nature. But I will attempt to post as much as is relevant in order to provide a complete before and after image of my problem.

Regards,
John MacIntyre


Hi, I am John MacIntyre

Welcome to Pebbles Under The Tongue.

A bit of a caveat; I am not a speech therapist, and I know almost nothing about speech therapy. … absolutely nothing about speech therapy. All I know is about my experiences and what I am going to learn in therapy.

I started stuttering at about the age of 7, I had a normal stutter. I had a b-b-b-bob sort of stutter. It developed at about the age of 7 years old.

My understanding is that at about 7 years old, speech becomes a motor skill. And my understanding about my problem is not that I have a nervous problem, or I am easily intimidated, or anything of that manner. I just have a defective motor skill.

So I started at about the age of 7, I tried to over come it by stomping my feet, or punching my leg in order to provide a distraction. It worked for a very limited time .. then after that, I was just bruising my leg, and stomping my feet for no reason. I’ve developed a lot of things like that in order to compensate for my speech problem. But none of them work, obviously, and they just wind up making me look kind of foolish.

When I became a teenager, I stopped stuttering and started blocking. It’s simply .. if you block, your voice box closes before any air passes through it and you end up trying to force air through. And the hard you try to force it, the more you block. So it’s a never ending cycle. I wounded up holding my breath, blocking, until I almost … I turned purple and almost passed out because I wasn’t breathing. Then I would stop, then I would block again. I would do this continuously.

However, because of avoiding speaking situations, and through body language and gestures, I was actually able to get around it in social situations. If I knew I was going to block … and I know I’m going to block … anybody who doesn’t stutter; .. I know when I’m going to block. I know the words I’m going to have problems with a few seconds before I get to them. So if I felt a block coming on, I just wouldn’t say anything … I would use a gesture, body language, what ever … or I’d kind of get a friend to do it.

The only problem that I had was when somebody confronted me and I had to give them an answer. For example; if somebody asked me what my name was. All stutters hate this question.

And then in my early 20’s my speech problem became a whole different animal. It was worse then, then it’s ever been. Even now I speaking very well compared to how I spoke then.

At that time, I was about 23, and I would begin to talk and my jaw would open, and I would basically lock my jaw open. My voice box would seize up, and I would completely block. And basically, I would just … I would be trying to talk and [demo-Open jaw] …

It started off just locking open a little bit, and then after a while, it exaggerated until I was locking my mouth completely wide open, in order to try to get this thing out … and I just … I could not speak at all.


It was pretty bad. Honestly, I don’t know how I got a job, I don’t know how I did anything. I really can’t figure out how I maintained any of my friends or maintained my job, how I even managed to move up to Toronto.

But now my speech problem has once again become something completely different. Now sometimes I will get stuck on a syllable and I will lengthen that syllable and I will exaggerate it, and I won’t have any control over my pitch or the volume.

Also something that I have too, is that once I begin to block, I will … because once I get past a block, I don’t want to take the risk of blocking again, I will use every bit of air that I have .. even after the point where nobody can hear me speak. Sometimes I will keep talking after all my air has run out, nobody can hear anything that I am saying!

So hopefully this will all be fixed!

One more thing too; a lot of times a stutterer will get stuck on a specific word or a specific sound. For example; the S sound, or a popping sound like P or B. And they can’t get past that at all. I always figured that, as a kid that, it was only specific sounds, and once I got though those, I’d be fine. However, I’ve found that, I’ve gone through every single sound and at one point in my life I could do the “S” sound with no problem, and at another point, I would be stuttering on that and the “S” sound would be my problem. And then a year after, I wouldn’t have problems on S’s at all, but I’d have a problem on B or P for example.

I also found that; my stuttering has changed. It’s gone from a regular stutter which I found highly irritating into the mess my speech is now. I wish could have s-s-s type of stutter! I wish I had a normal stutter. I mean I wish I didn’t do this at all … but if I could go back to a normal stutter .. I’d be pretty damn happy!

So it kind of grows and evolves. And my stutter has gotten worse.

I mean even now I feel like I’m speaking fluently, compared to how I normally speak. And how I normally speak, I feel is a lot more fluent than how I was in my early or mid 20s. … if you can believe that. In my mid 20s I was almost 100% non-fluent. I mean .. I could not speak at all.

Anyway, I hope I haven’t gotten too much off the beaten topic. And again; welcome to Pebbles Under The Tongue.


Not meant as advice, please find a qualified therapist if you are interested in similar therapy.

Thursday, September 08, 2005

Welcome to Pebbles Under the Tongue

My name is John MacIntyre. I am a 37 year old software developer living in Brampton, Ontario, Canada. I am married with 2 kids (3 before this blog is finished). I am a fairly normal guy in all aspects of my life with one exception; I have been stuttering since about the age of 7. This problem has influenced every aspect of my life, from what I order at McDonalds to the career I chose.

Over the years my stuttering has changed quite a bit and has cycled through almost total fluency and total non-fluency. At one point in my life; my jaw would lock wide open and nothing would come out until I almost passed out from not breathing. Then I would take a breath, try again, and lock again. This could go on for up to an hour.

My stutter has also changed over the years from the normal s-s-s-stutter to blocking* to something completely different. As it is now, over the phone I could easily be mistaken for somebody with a serious mental illness.

Anyway, on Friday, I received a letter announcing that I have been accepted into an intensive Precision Fluency Shaping Program starting on October 17th. Basically I will be attending speech therapy full time for 3 weeks.

My experience in therapy is what this blog is all about.

Questions and comments are welcome, I will read everything. I’ve tried to anticipate some questions you may have about the blog. Please find them below.

Thank you for joining me in this experience.

Regards,
John MacIntyre

What does “Pebbles Under the Tongue” mean?

I met a stutterer, in 1993, who grew up in India. When he was a child, and his problem became apparent; his parents took him to the doctor. The doctor told him to go to the beach every day, place pebbles under his tongue and read the newspaper aloud! WOW that's bad !!! While my speech therapy on the other side of the world in Nova Scotia was a bit more sophisticated, it wasn’t any more effective.

Why blog this?

Well there are a few reasons why I am writing this blog :

  1. Give an overview of my problem.
  2. Explain how it has affected my life.
  3. Give an overview of the Precision Fluency Shaping Program.
  4. Journal my unique experience in the therapy.
  5. Hopefully provide insight, hope, and/or inspiration to others who share my infliction.

What will I try to cover in this blog?

I see this blog as having 3 stages each with it’s own objective :

  1. Preceding therapy – A couple times per week, I will try to explain my problem and how it influences my life. I may provide videos online to show how I currently stutter and problems I have interfacing with the world. My views on the following topics will probably be covered:
    * Stuttering as a disability
    * How others react, and how it has changed as I get older
    * The Precision Fluency Shaping Program
    * Growing up with a speech problem
    * Effects on job searching, career direction, and career limitations.
    * Videos of my interfacing with the world
    * A day in the life
    * Answer any questions anybody has
  2. During therapy – Every day I will discuss my therapy, what I’ve learned, and how I’m proceeding. Online videos of me practicing and transferring the learned skills to the real world are a possibility.
  3. Post therapy – Discuss my follow up, progress, and issues transferring what I learn into the real world. Joining toast masters is something I am seriously considering. Follow up posts will probably be weekly at first, then taper off over the next year.

* Blocking is where the voice box closes before air starts passing through, so you end up trying to push the air through forcibly. But the harder you push, the tighter your voice box gets, making it even more difficult to break the block.


Not meant as advice, please find a qualified therapist if you are interested in similar therapy.