Why isn’t whole-person speech therapy happening for stuttering?
Why is it that many speech therapists have shifted their outdated views on what speech therapy for autistic kids looks like, but not for stuttering kids? Maybe it’s twofold.
1 - Identifying autism as part of a person, while stuttering is still seen as separate.
This first point makes sense when you look at things by their definition. The behavioral differences with autism show us ways this appears in personalities. The autistic community has fought hard to advocate that the whole-person approach needs to come without shame and without the expectation to fit into social conventions.
Meanwhile, ‘people who stutter’ (PWS is a commonly used phrase) don’t see how much stuttering impacts our personality. A stutter can be separated as a ‘flaw’ or a thing to fix. Even if you don’t think there’s a cure, you don’t approach people who stutter thinking about whole-person. And why would you? People who stutter constantly advocate that all stutterers are different. And while part of that is true, the issue now is that it suggests our only connection is the stutter itself - which also varies from individual to individual. But that isn’t true.
Throw 10 stutterers in a room together, and the similarities become clear. Yes - the stutters themselves vary. Yes, personality types vary… of course they do. But the new person is telling a story about how they “do this weird thing where they change out a word right before they say it”… and everyone else is nodding, smiling, knowingly. The new person tells a story starting with, “I had to call my insurance company” and you hear a collective groan… we all know this story will be a nightmare. When they say, “This lady - she gave me a look. I can’t describe it, but it felt…. gross” we once again all nod - we know exactly what they mean. Our shared experiences are infinite.
Another incredible similarity is in patience and social awareness. Due to stutterers feeling the time pressure, we tend to be more generous to others. We all sit and listen to someone for the time it takes to speak. We may jump in, but we are careful not to interrupt and back up if we do. You will rarely see people who stutter speaking over someone else who stutters. And we look for the quiet one, the one who seems on the margin, and we may connect with them afterward to make sure they felt comfortable.
I was so terrified to go be around others who stuttered because I was afraid to see my issues back at me… I was worried I’d only see insecure people who were miserable. But what I saw surprised me. The mirror - my stutter in other people - became obvious… these were people who cared deeply, thought of the underdog, felt that every voice mattered.
And I refuse to see it as “Your stutter made you more patient.” No, to me, being marginalized is what sets us on the outside, and then we decide to not let other people feel the way we have felt. We choose to develop compassion.
Regardless, the last 3 paragraphs are aftereffects of stuttering and social stigma. So go back up a paragraph for the similarities that are much more innate.
What I’m trying to say… is that stuttering is a part of who we are. Not the ‘inability’ to speak fluently… although that too, I suppose, though that isn’t consistent… but the way our relationship with language has developed. The way we exist with words and breathing and racing thoughts.
And while I might not stutter in every conversation - which makes it easier to separate ‘me’ from my stutter, having had a stutter impacts the way I even think about situations. The way I read faces as I speak.
Jonty Claypole, the author of “Words Fail Us: In Defense of Disfluency,” comments on a podcast episode that while he doesn’t stutter much anymore, he is still a stutterer, because having a stutter has shaped his relationship with language. It will always be with him, no matter how he sounds on any given day.
Being a stutterer, or a person who stutters, is more than just someone who does 1 of the 3 types of stuttering. But the world doesn’t know that.
2 - People who stutter are often in the dark ages themselves as far as neurodiversity and disability advocacy go.
Not to victim blame here… but (bad start, sorry, stay with me) I was just told a (recent) story of a man who complained that society’s view on stuttering hadn’t changed. Due to that, he was going to go out and “give in” - and let his story of ‘stuttering to more fluency’ be inspiring to non-stutterers. I.e. - he was furthering the stigma that comes with “inspiration p*rn”. He will tell them about how he couldn’t talk, but now he can!
I’m… sorry, but you’re part of the very problem you are complaining about. I won’t judge you for doing this - make money how you must make money…. it’s your story, not mine. But to complain society treats stutterers the same as it always has, and then… add to it?
It’s like Joe Biden saying, “Stuttering is the only disability it is still socially acceptable to laugh at.” - which, first of all, isn’t even true. But there is a point to be made that stuttering is still frequently mocked. Why? Could it be because people like Joe Biden are still hiding it at all costs? Could it be that we expect people to identify stuttering that looks clean like Porky the Pig? Could it be because when Joe Biden does stutter - and that includes pauses, word swaps, techniques - he won’t admit it? So people, since they don’t realize the various ways stuttering may look - assume something else is happening?
Stuttering is still mocked because PWS themselves won’t even call it a disability.
Stuttering is still mocked because people don’t know what stuttering looks like outside of Porky the Pig.
Obviously, it still isn’t nice to mock a stutter, even if it is a non-stutterer having a disfluent moment. However, the social stigma isn’t as affected when stuttering is seen as a one-off rather than a condition.
As such, I’m changing the name of my blog to “From Stuttering to… Stuttering” - a blog by Stutterology to capture this idea. I had a childhood stutter. I … I also have an adult stutter. And I am becoming all the things I wanted to be when you asked me, “What would be different if you didn’t stutter? Who would you be?” — Because I can be all those things with a stutter, too.
So what’s the solution? How do we change these narratives?
SLP/SLTs (Speech and Language Pathologists/Therapists) should be required to learn the harm of fluency treatment, and learn neurodiversity-affirming approaches for stuttering
This should be done in a fluency course in graduate school
Additionally as required continued education for current SLPs
Work can be done to help PWS let down the wall of internalized ableism. I don’t expect stutterers to suddenly renounce the term PWS for stutterer, or to tell everyone they have a disability. However, I do think organizations can be better equipping PWS in identifying how their views may be negatively impacting their ability to make change. I’m working on creating a course for this that is done in very simple English. No disability advocacy jargon, which can be inaccessible if you aren’t well-versed in it.
More open stuttering. No more praising ‘overcoming’ a stutter. No more equating stuttering to not being able to speak. Call this (the latter 2) out when you see it. Explain (kindly) how this messaging is harmful to PWS
What do you think? How else can we help neurodiversity-affirming practices happen for stutterers too? Do you think I missed anything about why it hasn’t transferred over to stuttering? (Perhaps the factor of 80% of kids growing out of it is part of it.)