Presentation to SLP Students Governors State University 1999

I've been speaking to speech path classes for several years. My presentation tends to change as my thinking evolves, but in general I try to emphasize that stuttering recovery is not just about fluency. Below are my notes from a talk to mostly undergraduate students co-presented last year with Jimmy Zerlentes. We were invited to talk about the NSP specifically, so there's a stronger organizational spin than usual. Jim McClure

PRESENTATION TO SLP STUDENTS GOVERNORS STATE UNIVERSITY 1999

by Jim McClure and Jimmy Zerlentes

Intro - This is a terrific place for a person who stutters to make a speech

If I stutter, you will be very supportive and will do all you can to make me feel comfortable.
If I'm somewhat fluent, you may tell me how well I speak for a person who stutters. And you may even focus so closely on my fluency that you fail to notice whether what I am saying makes any sense.

Introduce us

I've been stuttering for about 50 years In the NSP about 15 years Chapter leader - board member
Jimmy Zerlentes Supermarket mgr and Speech Path student Active in NSP
We'd like to tell you:
- About the NSP --
- Why we exist What we do
- How we work with SLPs
Reason we exist is that for PWS, speech therapy is only one piece of the puzzle I've had speech therapy that DID improve my fluency BUT I still stutter Most of the people I have met in self-help also have had speech therapy -- and most of THEM still stutter, too!
Most of us have found that stuttering therapy isn't a one-shot deal Speech therapy gave me some useful fluency skills For most of us, those skills don't last. No matter how fluent I get, I'm still a PWS. That's something that speech therapy didn't prepare me to deal with.

For most of us, I also learned that speech therapy was only one piece of what I need to truly RECOVER from stuttering. PWS have a lot of debates on what constitutes success in dealing with stuttering, and I'm sure SLPs do, too.

I define recovery as
- the ability to live the lifestyle of a fluent speaker:
- to pick up the phone instinctively,
- speak spontaneously and naturally,
- order in a restaurant,
- speak in public
- communicate as effectively as fluent speakers do -- without the excess baggage of fear and shame.
Speech therapy taught me to how to modify my speech, but it wasn't until many years later that I learned not to beat up on myself when I had a block.
What I found that I need -- to live the life-style of a fluent speaker is to
1. reinforce the skills I learned in speech therapy
2. AND- work on all of those emotional issues that my speech therapy didn't cover. -- so I can deal with my stutering in healthy ways instead of trying to hide it.
That's where stuttering self-help groups come in.
National Stuttering Project Chicagoland chapter.
- One of four support groups in Chicago area
- We meet once a month in a library in the western suburbs
- 5 to 12 people - some have had speech therapy, some have not
- What we do - speakers, discussion programs - spouses, running own businesses We are VERY informal and relatively unstructured No dues, few expenses
- What we get out it Not alone -- the one place we can talk about our stuttering with people who understand what we're going through Safe place to talk and practice fluency skills. Also a safe place to stutter - some of us stutter more in group because we feel freer to stutter.
National convention
- Being with 500 people who stutter - a real high
- Instant bond
- Youth programs
- One of the most important trends - partnership between stuttering support and SLPs
- Recognition that it takes more than just fluency skills
- SID-4 - subspecialty recognition
That's a brief overview of what we do in the NSA
(Hand off to Jim Z for his perspective. )

Changing the rules about stuttering

If you compare stuttering with other disorders, stuttering isn't all that serious. Some people have trouble walking, some people are hard of hearing, some people stutter. Not a big deal.

But there's a big difference in how stuttering is perceived. If you walk with an obvious limp, Boy Scouts help you across the street. If you're hard of hearing, most people will talk a little louder. But if you stutter, people assume that you're nervous, incompetent, or mentally ill. People usually won't laugh at people who use wheelchairs -- but they do laugh at people who stutter.

So we've always approached stuttering from the premise that stuttering is a bad thing to do.

The result is that most PWS spend most of their lives chasing fluency... and many speech therapists are only too happy to help them.

The goal most of us start out with is to NOT be a PWS -- to speak fluently without modifying our speech -- to not lose control the way PWS do and normal speakers do not. Not realistic for most of us.

So many of us enter speech therapy with the expectation of finding this Holy Grail -- and then blame the therapist when the magic doesn't happen.

Pay thousands of dollars to people who promise a lifetime of fluency - Martin Schwartz. Many PWS I know have been to not one, but several high-priced programs -- and are still looking for the silver bullet.

This great fluency chase is based on the premise that stuttering is a bad thing to do -- so most traditional stuttering treatments aim at helping people control their speech so they don't stutter at all -- or modify their stuttering so that it is more socially acceptable.

Speaking fluently doesn't solve the problem.

I've met a number of people who speak with excellent fluency -- never heard them stutter at all. But they live in daily fear that they MIGHT stutter - and go through all the shame and guilt and avoidance that severe stutterers do.

For some people, fluency skills are just another way to hide their stuttering -- all because of the traditional mind-set that stuttering is a bad thing to do.

So some of us in the self-help movement are changing the rules about stuttering.

We still want to speak fluently when we can, of course. But we also believe that stuttering is NOT a bad thing -- and that people who stutter have the right to be treated with the same respect and accommodation as people with other development disorders.

When we begin feeling free to stutter in public instead of trying to hide our stuttering, we often speak MORE fluently because we're no longer fighting all the fear, guilt and shame that compounds the problem of stuttering.

That's the change I've gone through in the last 5 years. When I stopped chasing fluency, I got more fluent. The biggest difference is that when I do have a block, it doesn't ruin my entire day -- because I'm no longer pinning my sense of self-worth on whether or not I have a stuttering block at a particular moment.