Perceptions – stuttering is bad, fluency is good
Why do you think that the belief still persists that stuttering is bad and must be fixed? It’s 2023 and society seems much more tolerant of differences. But this doesn’t seem to be the case with stuttering. It’s still laughed at and looked at as something that is broken and in need of fixing. Is there something more we should be doing to help people see that stuttering is just stuttering?
Hi Pam
Thanks for kicking off the PWS panel. Your question is very important.
I think that the answer consists of a few actions, some of which are:
1) Speech therapists must be trained that stuttering is ok, and not something that can or should be fixed. Fluency-focused therapies reinforce the stigma, and then speech therapists reinforce the stigma
2) Stop calling stuttering a “pathology”. It is not a disease; it is a difference.
3) “proven results” by fluency therapy programs must be challenged. For example, Lidcombe folks claim that their therapy is effective in ~70% of cases while the natural rate of disappearance of stuttering in the same age group is also ~70%.
4) As long as there is stigma about stuttering, some PWS will be ashamed of our stuttering and intolerance will persist. Therefore, self-acceptance based on our innate worthiness and rejection of stigma is necessary. In other words, a lot of the responsibility is on us
5) Being seen and heard, as we discussed last year or the year before. Stuttering needs to be seen and heard in regular life in order to be normalized. It’s a big ask, as long as stuttering is pathologized.
So, excellent question, complex topic, but perhaps we need to start at the source of where stuttering is pathologized, and that is at speech and language therapy programs at universities. It’s not easy. At one university where I lecture each year, the lecture is a speech therapist who understands stuttering and she herself does therapy based on avoidance reduction. And yet, in her class she teaches about counting stuttered syllables. I asked why, and she said that she does not agree with counting syllables but she is forced to teach it by the university.
Thank you Hanan for this very thoughtful answer. I really hope some of the SLPs and SLP students see this question and the responses. I agree with the idea that the very word “pathology” is a major part of the problem. Stuttering is not a disease for which you go to a doctor for treatment and cure.
I do think we – professionals who work with stuttering and we who stutter – need to question why we continue to think of stuttering, and call it, a pathology.
But if university professors like the one you mention are teaching to count stuttered syllables, and are told they HAVE to, its a change we may never see.
It’s interesting to me that in the UK licensed professionals who work with PWS are referred to as SLTs – speech language therapists and do not have the denotation of pathology in their title, like in the US with SLPs.
Hi, Pam and Hanan. It’s nice to be back here at the 2023 conference!
I feel that much of society has come a long way over the last half-century or so, in acceptance of disabilities, disorders, and differences of all types. While society may be a little slower in coming to acceptance of stuttering as compared to other disabilities/disorders, I think
progress is being made.
I have seen this in my own life – it’s something I’ve sensed in recent decades, that it’s more acceptable now to have a speech difference than it used to be.
(Perhaps, though, my perception could be partly based on where I’ve lived in the last few decades – in Norway, with a long-time culture of acceptance of personal differences and equality of people.)
I’m quite happy that there seems to be a shift now away from the old traditional perspective that “stuttering is bad, and fluency is good”. This old perspective was behind many different therapeutic approaches formulated during the latter half of the 20th century.
I myself was a client of four different fluency shaping programs during the 1970’s and 1980’s. Through them, combined with very intensive formal practicing of techniques, I was able to enjoy many extended periods of fluent speaking.
But now I realize that there were aspects that were very limiting about this type of perspective. On a practical level, I found that I just could not maintain fluency in the real long-term without intensive daily practice – something I just got tired of.
More importantly, though, I came to realize that it was perfectly okay to simply and peacefully accept myself as I am – a person who just happens to stutter.
I had – and have – a speech difference. And that is perfectly okay.
To be different is not a matter of goodness and badness. It simply is. I may have difficulties often in speaking – but so what? Other people have difficulties in other areas of life. I often have difficulties in speaking, and have a speech difference – and that is perfectly all right. There is no reason why lack of consistency in speech fluency should be regarded as “bad”. Many do have such consistency, but others do not. We should work towards an equality of society where people with differences are fully accepted.
Thank you Paul.
I agree that there has been progress towards acceptance of disabilities over the years, particularly with visible disabilities. No one thinks twice about seeing disabled parking, seating for those who need these. But with invisible disabilities, of which I include stuttering, acceptance is not as easy, since there is an element of surprise. We don’t know someone is autistic or stutters or is deaf until we have an initial encounter and we “hear” the difference.
Even as a mature adult who has stuttered for 50 years and have long accepted it, it still stings when someone laughs or mimics me for a moment when they first hear me stutter. It’s rare that it happens, but when it does, I’m just so surprised that it does.
It feels so discouraging to read in Hanan’s response that there is a university professor teaching student speech therapists to count stuttered syllables with clients.
Having this month long conference really helps to raise awareness and educate.
Thanks for this important question, Pam. A few days ago, when I talked about the importance and the impact of children and youth camps, a friend asked me why there is still so much shame amongst PWS. I believe it’s because focus from society is still that stuttering is something wrong, that should be treated and be gone. I see less movies and jokes where a PWS is the nervous, stupid villian, which shows there is a shift going on. But it’s still there. There are parents still think that to “help” their CWS, they must make it stutter-free. There are still some SLPs (also shifting, which is amazing!) who think fluency is the only goal. (Nothing wrong about fluency, but climbing the mount Everest is not for everyone. For some, climbing a wall at the gym is good enough, for others climbing the slide in the playground, others don’t want to slide at all.)
But something that’s still there is people wanting to help. By filling in. By giving “advice”. My friend said it’s so hard nowadays to not say the wrong things, to not offend a person and asked me what’s the right thing to do or say. I told him: nothing, just be as you are with others. Any other signs can be interpreted as me having to change. That what I do needs to be adjusted. I think these micro agressions, how friendly they are intendet, still trigger us to feel shame and wanting to hide our stutter.
We’re getting there. Baby steps. 🙂
Anita