May 30 Meeting Update: Connect

One of the high points of our support group meeting yesterday was a great story that a group member shared. He was in a coffee shop one day when he noticed two young women, both blind, helping each other to order and find a table. He approached them and introduced himself. He let them know that he was a stutterer and that he was interested to find out what their greatest challenge was as blind persons.

Whether or not you stutter, it takes a lot of courage to approach another person and connect with him or her in an open and honest way. If you do stutter, the difficulty is compounded. We're often afraid that "normal" people will laugh at us, be condescending, rude and dismissive. But we forget that nobody is really "normal." We all have problems, insecurities, flaws. Look hard enough and you'll find something "abnormal" in everyone. The only difference is that some kinds of "abnormal" are easier to hide than others.

Having a stutter isn't easy to hide. Neither is being blind. It's all out there for everyone to see. And many "normal" people who come face to face with it--who have to listen to someone struggle his way through a sentence, or watch a blind person find his or her way--often handle it badly. They freak out. They're reminded of their own insecurities, and, to cover up their discomfort, they laugh, condescend and dismiss. Do you want to know what the young women's biggest challenge was as blind persons? People think that because they're blind, they're stupid.

That's a lot of people's knee-jerk reaction: equate whatever seems "abnormal" with stupidity. Now how stupid is that? Remember this next time someone is rude to you because you stutter. Remember that you aren't alone--there aren't only hundreds of other stutterers who are fighting the good fight to stand up for themselves, but many other hundreds of people who are blind or deaf, challenged in their bodies and minds in many other ways, who are also fighting that fight.

The best way to diffuse a situation in which someone is reacting stupidly when they watch you struggle is to educate them. Tell them what it's really like. Connect with them in as open and honest a way as a you can. That's enormously hard to do when you're feeling attacked by a mean or angry comment. But behind that anger and meanness often hides someone who is afraid, who is simply ignorant, who has forgotten that deep down we're all the same, flawed and yearning to be accepted just as we are.

May 14 Meeting Update: Emotions and Speech

Posted by Matt

At our Monday, May 14th meeting at the Kaiser Medical Offices in Irvine, we discussed successes we had with our speech over the last few months. Over the last several months our discussions have been on pausing, sliding on non-feared words, reading out loud, eye contact, continuous phonation, etc. Several people have had success in reading and eye contact from the advice of others.

We talked about our biggest challenges. A main topic was the fear we have of what people think when we stutter. We are so consumed by that fear that it controls our mind in a negative matter. An important thing to remember is that if you ask people about how they feel about us stuttering, they don't really care. People have enough issues to deal with on their own--school, work, dating etc... Basically, they don't care. We are our own biggest threat. These issues may be difficult to get over, but the fact is once we accept it, we can move on and things will improve.

Lastly, I handed out a self evaluation form with 10 questions about rating our anxiety level when reading alone or in front of a group, ordering food, using the phone, introducing ourselves etc. The goal was to identify areas where we see a need to improve. Each of us put down a strategy to improve these and to write about those experiences each week. We'll talk about them next month's meeting in June.

We had a response to the above from a speech therapist who works with children. It is insightful and we thought we'd share it:

I am a Speech Pathologist who has been attending the NSA TWST group in Irvine with one of my students and his mother.  Reading your notes from your last meeting prompted me to share something that I heard from Dr. Yaruss (a speech pathologist who often presents on stuttering) that has stuck with me for many years.  He discussed the emotional factors of stuttering as one of the most important points to address in therapy.  He explained that everyone needs to have a positive self image (those who stutter and those who do not).  If you have that type of self image, others cannot successfully tease or bully you.  People are quick to learn what issues you feel "shame" about and target those areas.  For him, he stated no one could tease him about being bald no matter what was said as he felt no shame.  However, if a statement was made about his weight, that would effect him... as that was his "shame issue."  I try to really push this idea in my therapy sessions with students I work with.  It is, of couse, easier said than done, but I feel it is good food for thought.  Additionally, when self advertisement is used, it takes away the fear that the listener will find out the speaker stutters as well as gives the listener a heads up that he/she might see the speaker stutter- decreasing anxiety for both parties.

One example I have is with my student who attends the TWST group... He was on the playground 6 years ago as a 2nd grader when he was engaged by another student (who I happened to be observing).  The student I was observing challenged the boy who stutters about what happened in the game that was being played.  The boy who stuttered answered him exhibiting multiple repetitions.  The student I was observing said that he (the boy who stutters) lied because his dad told him people who don't give answers with smooth speech are lying.  The student who stutters confidently said, "I'm not lying, I just stutter!"  The issue was dropped as the boy I was observing had no come-back.  

Choices

The focus at our support group meeting yesterday was voluntary stuttering. We talked about it at length, asking very specific, detailed questions. What is it, exactly? How do you do it? Why in the world would you want to? And how does it work to make stuttering easier, sometimes make it even disappear?

To be perfectly accurate, voluntary stuttering isn't really stuttering as we commonly think of it. When you stutter on purpose, the point isn't to make believe that you are a stutterer. As one of our group members put it, you're not Colin Firth playing King George VI. In voluntary stuttering the focus is much narrower. Your goal is simply to elongate the first sound of a word--one that you don't fear, at first; later you work up to feared words--in a relaxed, calm manner. Instead of I'd like some ice cream, you say, I'd lllllike ssssome ice ccccream.

No doubt about it, you will sound strange. You will probably feel as nervous and self-conscious as when you're stuttering "for real." And the last thing you need, as a stutterer, is to put yourself in situations that will make you feel weird and nervous and self-conscious. You get enough of that without asking for it. Why in the world would you seek it out on purpose?

There's a strange magic in making a conscious choice to do something. It puts you in charge. Things are no longer happening to you while you're standing by, helplessly caught in the current of the moment. You are the one who is making things happen. It doesn't matter that they may be unpleasant. Choosing to do something difficult changes the difficulty of the thing itself. More importantly, it changes what you get out of doing it.

What I get out of stuttering on purpose is a sense that I'm not a victim. Sure, I didn't choose to be a person who stutters. But I can definitely choose how I go about being a person who stutters. There's a difference, a subtle but important one. It's as if someone had thrown me in a game whose rules I don't understand, and all that happens when I'm on the field is that I get hit in the face with the ball. I can choose to give up, run to the remotest corner and hide there out of the way of the ball. Or I can decide to learn the rules of the game, confusing as they might be, and get out there and try to hit the ball myself and score a goal. I can choose to play.

To me, voluntary stuttering is choosing to play. The ball will hit you in the face from time to time. It will hurt. But other times you will find yourself running free, in complete charge of what's happening, knowing exactly what you have to do to get the ball through the goal posts. For that feeling, for that moment, it's worth playing with everything you've got.

Article: The Paralysis of Stuttering

The Paralysis of Stuttering by Francine du Plessix Gray, a former stutterer herself, in the current issue of The New York Review of Books, discusses stuttering and several excellent books (both fiction and non-fiction) on the subject. Well-worth reading.

Eye Contact

It's easy to forget, when you stutter, that the way people communicate with one another isn't just through words. Non-verbal communication accounts for at least half of the information that gets exchanged when we talk to someone else. Our posture, hand gestures, and tone of voice matter a great deal. For stutterers, this isn't always a positive thing. Sometimes we try to compensate for the hesitation and fear and distrust we have about words by exaggerating (often unconsciously) our body language.

But there is one unequivocally positive component of non-verbal communication that we can focus on when we talk to someone: eye contact. It isn't very hard to maintain eye contact when we are fluent. It becomes almost impossible when we get stuck and stutter. This makes sense. It feels strange to look into someone's eyes when your mouth is open and no sound is coming out, or when the sounds that do manage to come out are repetitive or garbled. It's humiliating and embarrassing. So we look away. In the moment, it gives us a little break. It makes things easier.

Long term, however, it makes things harder. By looking away we're unintentionally sending the message--to the other person and also to ourselves--that we're not really worth talking to. We imply that our words don't really matter because we're not saying them with perfect fluency. We give short shrift to what we have to say and overvalue how we say it.

I told myself for a long time that I would maintain eye contact when I stuttered just as soon as I gained enough confidence to do it. But confidence doesn't work that way. It doesn't grow by itself; it's fed and strengthened by what you do. At first, you have to maintain eye contact even if you don't feel like it, even when it seems stupid and pointless. You do this again and again until something changes. And something does change. You begin to feel a difference.

What's the difference? The conviction--slow but sure in coming--that you are the equal of the person you're talking to, no matter that the other person is fluent and sometimes you're not. People respond to that. More importantly, you'll respond to that. It's easier to work on improving your fluency when you think well of yourself. When you believe that you have something worth saying, chances are you'll say it better.

And if you don't say it as well as you would have liked, that's just a temporary setback. There's always next time. For people who believe in themselves, failure is just another chance to get better.

Facing Up

The only way to defeat fear is to face up to it. At last night's meeting, all of us stood up and gave a short speech. We were all nervous. A part of us didn't want to do it. But we didn't let that part win. We stuttered sometimes, and we were fluent sometimes. But we spoke. We made ourselves heard. We proved to ourselves that we can do it.

It was an especially difficult challenge because we had guests, students from the graduate program in speech pathology at Cal State Fullerton. They asked about the role of speech therapists in our lives: what it was in reality, what it should be ideally. The answer: the perfect speech therapist listens more than speaks; is supportive; pushes us to do the things we're afraid of; understands that stuttering isn't just about speech, it's about us who we are as a whole; tailors the therapy to our particular needs instead of following a rigid program.

No matter what our experiences with speech therapy have been like, I think it's useful to engage with the topic, to answer questions from speech therapists in training. Yes, it helps them. But it also helps us. We can gain a better understanding of what we need as people who stutter. And if we understand what we need, we can then work on giving it to ourselves, rather than rely on someone from the outside to do it. We can listen to and respect ourselves; acknowledge that we aren't just people who stutter but complex human beings with many strengths and talents; we can challenge ourselves to face our fears and become better communicators.

One of our group members suggested a self-help book he found particularly useful: William D. Parry's Understanding and Controlling Stuttering. Did you read it? What did you think? Are there other books that you found helpful and inspiring?

The great thing about facing your fear of speaking is that the more you do it, the better at it you get. Maybe you don't get as good as you'd like at speaking fluently all the time. But you get really good at not being afraid. In my view, that's the greater good and something really worth working hard for.

Small Steps

What most stuck with me from our meeting yesterday was the idea of making small changes. It's obvious, I know. We're more likely to succeed if we break a daunting task into small assignments and set ourselves less glamorous but manageable goals. But it's also easy to forget. As stutterers, we want so much to speak fluently that it's hard to take our eyes off that enormous prize and try to figure out what small steps we can take in order to actually get there.

They can be annoying, these tiny steps, because they're so, well, tiny. Often it seems unlikely that they'll actually make a difference. Will it really matter in the long run if I read out loud to myself for a few minutes every day practicing continuous phonation? Can it really count to focus on easy onsets for two or three minutes while I'm having a chat with a trusted friend? If I commit to speaking up at a support group meeting, even if it's just a handful of words? Or keep eye contact for two or three seconds as I stutter?

The answer is yes. All these apparently insignificant things count. They accumulate. They build up into something significant. It's a gradual process, like any kind of growth. For a long time it's hard to see the results. But eventually they do show. You begin to trust more and more in your ability to communicate effectively with others. It's like a muscle: the more you exercise it, the stronger it gets. It's important to be persistent, to push past your limits. But not too much, not too fast, not too hard.

True, sometimes it feels like the work will never be done, the fight will never be won. The day when I can lay down my arms and not struggle so hard seems far away, out of reach. I have to confess I'm a little disheartened by this. But I take comfort and pride in the fact that the more I do the work, the easier it gets. It's a great accomplishment to be strong enough to do it, to have the courage to stick with it day in and day out. It's good preparation for the rest of our lives.