 About the Author:
Max Gattie is researching stuttering for a PhD at the University of Manchester in the United Kingdom. He runs a support group for stuttering which has met every two weeks since 2008, and was the lead organiser of the 2016 British Stammering Association conference. In 2018, Max appeared on the BBC TV show “Dragon’s Den”, the UK’s equivalent of the US show “Shark Tank”, where he self-disclosed about his own stuttering. You can find out more about this experience on his blog. Max also has a research website. |
When we say “One Size Does NOT Fit All”, what do we mean by “All”? For example, does “All” mean all of the stuttering community? Or, does it mean all people who stutter everywhere in the world? Are these even the same thing?
I discovered that fewer than 1% of adults who stutter engage with the stuttering community. I did so by using my own research of international, national and regional stuttering communities. I think this is an important finding, because it suggests that when we discuss “One Size Does NOT Fit All” we should consider why 99% of people who stutter do not engage with the stuttering community. Without understanding this, we cannot fully address our topic of “One Size Does NOT Fit All”.
I need the help of ISAD online conference attendees to understand why more people who stutter do not engage with stuttering communities. Your ideas and experiences can help us to make sure that our communities are truly inclusive of everyone who stutters.
How I worked it out
You might wonder how I worked out my estimates. My calculation followed the same method in every case. For the international estimate I counted up how many people were part of online English language speaking stuttering support communities (e.g. Facebook or Reddit). The answer was 105,435. Then I worked out how many adults in the entire world could speak English as a first or additional language, and also had internet access. The answer was 1,107 million. Of these, slightly fewer than 1% should stutter, which is 10.6 million. Then I divided the 105,435 in online stuttering communities by the 10.6 million who could access those communities, to establish that 0.99% of adults who stutter engage with the online stuttering community.
I made the same calculation using national data. To do so, I counted up how many people were members of a charitable support organisation specific to adults who stutter, which was the only such organisation in its country. I then divided the membership by the adult stuttering population of that country. The answer was that at most 0.5% of adults who stutter engaged with the stutter charity. The data for the country were interesting because as well as the stuttering charity, it had for many years been a centre for an intensive therapy programme run by people who stutter. Detailed membership information for that therapy programme was not publicly available. However, based on informal enquiries my interpretation is that the combined memberships of the stutter charity and the therapy programme would have been approximately 1% of adults who stutter in the country. This has particular relevance to the ISAD theme (“One Size Does NOT Fit All”), because the attitudes towards stuttering from the charity and the therapy programme were often quite different. The indication from my study was that no more than 1% of adults who stutter engaged with the stuttering community even when two distinct subpopulations of the stuttering community with different attitudes (i.e. the stutter charity, and the therapy programme) were available. This resembles what economists refer to as a zero sum game, in which whatever is gained by one side is lost by the other side. It made me think how we could all try harder to understand other people who stutter, even if we don’t agree with their attitudes towards stuttering. And how people who don’t stutter should listen to all of us. One size really does not fit all.
The final calculation I made used the membership of the stuttering support group I run in Manchester, England. I based the calculation on the number of people on our mailing list, which is 220, rather than the number of people who attend meetings, which is usually between 5 and 10 with the exact people in attendance changing a little bit every time. Then I worked out that 21,733 adults who stutter live in the Greater Manchester Metropolitan Area. Dividing these numbers showed that 1% of adults who stutter in Greater Manchester engage with our group. Anecdotally, I can share that attendance between 5–10 people at local stuttering support groups is really common in both Britain and the USA. The exceptions I have found are Dallas and Houston in the USA, which can reach attendance of 20 or more. If anyone reading has other experiences, please share them!
Find out more
I have written about my research in detail for a journal specialising in stuttering. The full account features lots of detailed analysis of data, and some complicated mathematics explaining how to account for things like people who are able to hide their stuttering, those whose stuttering begins later in life (e.g. due to stroke or head trauma) and so on. The journal is reviewing this research at the moment, and I hope I will soon be able to make it available for everyone to read.
I have also presented the ideas to groups of people who stutter, to ask for their input. This has included my own support group in Manchester, UK, and regional groups in Los Angeles, USA. At the 2022 National Stuttering Association conference in Newport Beach, USA, I made a formal presentation about stuttering community engagement. I was able to gather a lot of interesting information at that conference, which has helped me to develop my research.
How you can help
I would love it if attendees to this ISAD online conference could suggest reasons why only 1% of adults who stutter engage with the stuttering community. I am hoping that between us, we can work out what all of the reasons might be. There might be lots of different reasons, so it would be great if you could tell me even if you think a reason might only apply to a few people, or is really unusual. I really want to hear about unique and unusual reasons! I also don’t mind at all if I hear the same reasons lots of times – in fact, that is quite helpful. So, don’t be worried at all if you want to suggest something that seems obvious.
There are different ways you can join in with this research. One is simply to write whatever you think in the comments below this article. You can also use the comments to ask me about the research, or about anything else related to stuttering.
Another way to respond is to complete a survey I set up specially for this research. The survey is totally anonymous, and has ethical approval from the University of Manchester. If you want to complete the survey, the link is here.
Max,
Your research is fascinating. So much so, that I will take a somewhat devil’s advocate point of view and ask. Given that a person who stutters, has ulcers, has AFIB, a sloppy functional heart murmur, and positive attributes such as natural curiosity, dedication to football, member of certain race,…etc
and it goes on and on. Thousands of characteristics, scores of deeds, and misdeeds,…
Why should this person take one of the characteristics and define himself with it?
What made you decide to associate with Adults who Stutter? Why not group yourself with handsome young men who might want to be models? I am really asking you if you have identified yourself by your stuttering? If so, why?
Gunars Neiders, Psy.D.
Hi Gunars, thanks for your comment! It sounds as though you are suggesting that some who stutter may not define themselves through their stuttering. If so, they would not particularly have a stuttering identity, and would therefore not join with stuttering communities. Is this correct? Please clarify if I’ve misunderstood.
In my own case, I decided to associate with adults who stutter after completing therapy for my own stuttering. I felt that a support group for stuttering would be important during what I considered as the stabilisation phase of my own therapy. Later on, I realised that the group was helpful to others who stutter, and I have kept it running for that reason.
The group has also been helpful to me because in my research career, I am investigating stuttering as a way to understand how speech and language work in people who do and do not stutter. Stuttering is really interesting when examined from this perspective. Associating with others who stutter has been useful to me in this regard. Sometimes, there can be a tendency among those who stutter to read too much of their own experience into that of others who stutter. Associating with others who stutter can be an effective way to overcome this tendency. I’d add that it’s very important to spend time with people who have attitudes towards stutter which differ from your own! Otherwise, you can end up with a confirmation bias towards your pre-existing beliefs.
As for whether I identify myself by stuttering – sometimes I do, sometimes I don’t. It varies according to situation and to my mood at the time. I can forget about stuttering altogether sometimes.
Max,
Beautiful and meaningful answer. Since, the way I read it, you do not define yourself solely by your stutter, I view it as healthy.
In my practice, I try to disabuse the client that he should think of himself solely as a person who stutters. It would be humorous, if it would not be sad, that while playing football or drinking a beer after the game you would focus on stuttering. Or worse yet, if your wife is giving birth to your child in your head the thought would rattle around, “I am a miserable stutterer.”
When a client of mine goes out on a job interview, I tell him “Don’t focus on your speech. If you are interviewing for a job as a computer programmer, don’t you think your prospective boss is more interested in how able are you to write a good program, not how many disfluencies you have in your speech.” As I recently told one of my clients, “You are not interviewing to be a Bollywood orator!”(He was from India).
Want to compare our different mindsets about stuttering?
By the way in stabilization phase what are you stabilizing? When one works on mindset about stuttering and emotions that result from the mindset (remember the stoics who say that “it is not the event that upsets us, but the evaluative beliefs that we hold about the event that give us grief”.
Hi Gunars,
As I understand, what is stabilised is new strategies for dealing with moments of stuttering, along with discontinuation of struggle and secondary behaviours.
Max
Hi Max
Nice to find you so close to home! I live in Glossop.I was part of a self-help group in Manchester in the late 80s early 90s. We only had half a dozen members at most. I felt it was not well organised and lacked a real purpose. It was more like a social group and I did not need that. I probably wasn’t very sociable. I had a strong covert stammer and felt isolated because of this.I was much more at home in a speech therapy group with a common purpose. I am much more than my stammer and can find I do not have much in common with all people who stammer.
Fantastic question! Why aren’t more people who stammer in a therapy group or in a support charity. Also important – why do people leave therapy or support. In answer to the first question I believe statistics have shown that 75% of stammerers hide their stammer to some degree – and they do not want to talk about it. I once worked for a company of 300 staff where I identified at least three (1%) PWS including me.Being a covert stammerer no-one knew I stammered apart from me! I talked to the other two about the BSA, but they were not interested. I met a young man last week serving in a local shop. I noticed he stammered a bit
and told him about Stamma. Again he was not interested. He was very relaxed/comfortable and told me he had just learned himself to speak more slowly. Some people are just not bothered – it is not a problem for them.
I now may well contact you via your blog. I am a big fan of the late Patrick Campbell.
Best wishes
Tim
Hi Tim,
Great to hear from you! Do call in and see us sometime!
Maybe you can help us with the history of the group? It dates back to the 1950s! I’m not sure it’s always been the same group though. So, I knew it had a late 1970s incarnation (distinct from the 1950s version) and also that it existed in the late 1990s (we have one member who can remember that time). But I didn’t know about a late 1980s, early 1990s period. This is really fascinating! Manchester seems big enough for some continuity in stammering support, although it might be a challenge to determine whether this has been the case. Perhaps we are like the Ship of Theseus!
Regarding the research question, I get several impressions from what you’ve written.
• Your stammer was strongly covert, and this didn’t fit so well with the rest of the group. Was it mainly overt stammerers?
• You felt isolated within the group – maybe due to your covert status?
• Stammering is not that big an aspect of your personality, and this can mean you don’t have so much in common with other people who stammer such as those you’d meet at support groups.
• You’ve sometimes encountered people who stammer away from the stammering community (e.g. at work, or in a shop). When you’ve spoken to those people and asked them about stammering, you found they were not interested. Would love to hear more about this! What exactly happened in the encounters?
Let me know if I’ve got this right. Anything else you can tell me would be a terrific help!
You’ve probably found my blog post about the TV presenter Patrick Campbell (https://stammertime.com/2022/08/23/call-my-bluff/). Videos of his performances have just started to resurface, and they are splendid stuff. I think many have forgotten that the BBC featured an overt stammerer as a regular presenter and pundit on prime time TV throughout the 1970s.
Max
Hi Max
Thank you for your invitation to visit your group. I will take you up on that. When and where do you meet.
I did not know anything about a group in the 50’s and 70’s.The group in the early 90s was led by Mike Hanrahan. Who is your member who remembers the late 90s?
I think we had a mix of mild/average/severe stammerers. I was mainly covert. Obviously some were trying not to stammer.Even when people are overt stammerers there can still be a lot of avoidance going on.
My personality has had a huge impact on my stammering and my avoidance of stammering has had a huge impact on my life. I would have been happier if the group had been a BSA support group doing activities. I was a very active BSA member/volunteer/staff member. I did not need a social support group. A therapy support group would have been fine.
I can’t remember exactly what happened with the first two PWS I approached. It was over 25 years ago. I told them about the BSA which they had not heard of. I was probably uncomfortable mentioning stammering to them when I probably did not stammer. Maybe they picked this up. One of them had quite strong head tics, which maybe were more of a problem to him. They may or may not have been linked to his stammer?I probably asked if he had any therapy and I suspect he answered yes – and it obviously had not worked. I don’t think the other person thought it was a problem.
I told the young man I met recently about Stamma and the fact that I hid my stammer. For all I know he may or may not contact Stamma.
I look forward to meeting you.
Tim
PS Derek Jacobi stammering in ‘I, Claudius’ in the 1960s had a positive impact too.
It was good to know that Emperors stammered as well as Kings (George VI)!
Hi Tim,
We meet near the University of Manchester. We also sometimes have social events in the city centre – we did one last Friday, actually, with a long-time member using the event to practice his wedding speech.
The next meeting will be later this month, and we’ll have social events and so on in the run up to Christmas. Usually meetings are every two weeks. Do drop me a line via the form on my website. Alternatively, we have closed a Facebook group which contains meeting details. This is fairly easy to find, so do send a join request if you use Facebook.
Best regards,
Max
I mean a closed Facebook group. We haven’t closed our Facebook group 😂
Hi Max,
Interesting question!
I have two adult friends who stutter who do not engage at all in the stuttering community. My two friends know each other, but I don’t think they have pondered this with each other.
I have asked out of curiosity to each of them, separately, why they don’t participate.
Both have said similar – different words, same message. “Because then I would be identified as a stutterer, and I don’t want to be identified as such.”
Interesting, right? One stutters quite pronouncedly, with long blocks and repetitions and quite a lot of struggle behavior. She is in her late 30’s. My other friend struggles almost exclusively with silent blocks. He is a physician and spends hours trying to appear as fluent, as he simply cannot equate being a doctor with stuttering. He just turned 50.
I hope these examples are helpful.
Pam
Hi Pam,
That’s very useful – thanks!
Can you remember the exact words they used? Sometimes those can contain clues about underlying feelings. Also, how do you interpret their comments? I don’t know these people, but two possibilities occurred to me.
The first possibility is that it’s a kind of internalised ableism: they don’t like stuttering, and don’t want to be associated with stuttering. The other possibility though is that they don’t really identify as stuttering, even though they stutter. I think this can happen because people who stutter can sometimes speak fluently. So, there can be a feeling that the “authentic” personality is the one which does not stutter, and hence the reluctance to be associated with stuttering.
Can you or anyone else think of other possibilities? Do let me know!
Max
Hi Max,
I don’t remember the exact words, sorry, as it was some time ago.
My doctor friend – I interpreted his words of not wanting to be associated or identified with stuttering as his long held belief that stuttering is a flaw, and that a physician cannot have flaws. He really fears being judged as incompetent, especially with residents that he has to present to. He can speak fluently and easily a lot.
My other friend can not speak fluently at all – she blocks long and has repetitions on every word. She appears to really struggle – but she does not act like she is struggling. And no one around her reacts as if she is struggling. She is the VP of Brand at a highly successful marketing company. She writes and started off her career as a blogger, so her authentic voice (as a writer) has never stuttered.
Pam
Max – this is such a good research question and kudos to you for tackling it head on. There are so many factors that drive this phenomenon. When we met a few months ago during a virtual NSA meeting I shared with you that I believe shame is a significant variable which drives disengagement from the stuttering community. It is obviously an emotion that plays a big role in avoidance of stuttering, and the allure to remain covert. In my personal journey – I believe I didn’t confront my stuttering, or get help, until my 20s, because I was not ready to confront it. When I finally did, all of the negative emotional turmoil came to the surface that I then had to deal with, and grieve accordingly. That was the beginning of the thawing of the iceberg. Perhaps for some who stutter there is a level of repressed shame – where the person wouldn’t even think to associate themselves as a person who stutters, or google stuttering support, albeit they google a million of other things in a day. We hear about PWS who don’t meet others who stutter until later in life. For many this is could be a lack of resources. But now, with the internet, there are a plethora of opportunities. This view that shame is an influence could be framed in a sort of freudian view when you add the layer of repression, and the role of the unconscious mind. This is obviously just one idea you can add to the many that people have shared with you. Surely it is a large variety of factors. Although I’ll be interested if one major theme stands out.
Just curious – can you share more about your research design? Is this a more qualitative study at this stage or if significant factors are identified is there a way you can represent the data quantitatively?
Thanks for the work you do.
Randy
Thanks Randy, that’s really helpful! I do still have extensive notes from your OC chapter group, and these will be incorporated into the report.
Your suggestion is somewhat similar to those identified in the discussion with Pam. Perhaps there a grouping around avoidance of anything to do with stuttering. There could be many reasons. Shame and internalised ableism are both possible explanations, but I also think there can be a kind of imposter syndrome where the person who stutters doesn’t really identify as stuttering, and certainly doesn’t identify as disabled.
The study design is for qualitative survey. I’m using mixed methods for data collection. There is an online survey, but I will also use focus groups, one-to-one interview, forum-style discussions such as the one we are currently engaging in, and ethnographic methods (e.g. ad hoc discussion). I’m intending to do a thematic analysis of the results. The exact process will follow whatever the data dictate – I’m personally inclined towards a grounded theory, but it may work out differently.
There are obvious sampling problems which follow from only 1% of adults who stutter being available for survey. As a result I’m using purposive sampling, in which I will deliberately recruit from subsections of the stuttering community. For example, I will ask groups receiving fluency shaping therapy as well as groups who are discussing pride initiatives, and I will also deliberately recruit “expert” informants from the stuttering community. I’m also going way beyond the saturation levels which are frequently considered sufficient for qualitative studies.
A result of the study design is that we will be able to see a variety of reasons why adults who stutter might not engage with the stuttering community. However, we will not be able to see which of those reasons are the most popular! Those data are not available from the study design. To obtain them, one would need representative sampling of an entire population. Such a study is overdue for stuttering (was last carried out in the 1990s) so perhaps my qualitative study can help to inform a quantitative follow-up.
Max
Hi Max,
Great work on your presentation. I appreciated how you made your calculation for the 1% of adults who stutter and interact with the online stuttering community. As a graduate student in speech-language pathology, we are learning about fluency disorders; however, we want to consider engagement and the client’s interests as goals in treatment because not every person who stutters wants to eliminate their stuttering. It was great for you to not define yourself by your stutter but instead embraced it and focused on considering the different mindsets of stuttering in adults. On one of your comments, I believe it is to Randy, I noticed that you stated that you use purposive sampling from the stuttering community. That would be a great thing to consider as a future clinician because it may represent the reasons why adults either engage or do not engage in the stuttering community.
Hi Michael, thanks for your comments! I certainly agree that you should ask people who stutter what they want from therapy, and work with them to achieve those goals. Expectation management is really important as well 🙂
I think purposive sampling will be crucial for any type of qualitative research in stuttering. With fewer than 1% of adults who stutter engaging with the stuttering community, reliance convenience or snowball sampling seems likely to create serious bias issues.
Max
Hi Max – such an interesting question. Our son has not really engaged in the stuttering community. I’m guessing there are an array of reasons for that – but I’m going to encourage him to engage in your study. I mean, what does a mom know? Hope you are well!!
Hi Dori, great to hear from you! Thanks for encouraging your son to complete the survey. You are also very welcome to complete it yourself. It’s not just for people who stutter – Moms’ insights are important too!
Do pop in to see us again next time you’re in Manchester 🙂
Max
Hi Max,
Thank you for all your research and support work within the stuttering community. As a future speech-language pathologist it is very inspiring to see what you have accomplished and what you continue to work towards, especially in reaching more of the 99% of adults who stutter who do not engage with the rest of the stuttering community.
I am not a person who stutters, and until recently had very little understanding or knowledge about stuttering. I am currently taking a fluency disorders class from a professor who is a PWS and that has given me great insight and empathy that I don’t think I would have otherwise. I am very fortunate to have that opportunity – and to hear the experiences of others such as yourself and more on this site and as guest speakers in my class.
From what I’ve learned, it is obvious that many PWS have had profoundly negative experiences and faced stigmatization throughout their lives – unfortunately, even from misguided speech therapists who focused solely on fluency – and have not been supported to accept themselves or that they are a person who stutters. I wonder if this prior pain and stigma is part of why some adults choose not to interact with the greater community of PWS. It might seem like shedding a light on their least favorite aspect of themselves, or opening themselves up to further criticism or stigmatization.
If so, I think that is really unfortunate, as finding a supportive community could be just the beginning of the road toward self-acceptance.
Thank you again for sharing your research and perspectives.
Hanah McCabe
Hi Max,
My name is Katie and I am a current second-year student at the University of South Carolina studying to become a speech-language pathologist. It was interesting to read about your research. I was unaware that so few PWS engage with the stuttering community. I was curious about your personal experience with stuttering. Before starting your own stuttering support group, did you attend a stuttering support group? If so what benefits did you find from attending this group?
Hi Katie, I got the idea for the support group from my SLT!
I was really lucky to have an SLT who stuttered – she was fabulous. When I first visited, I remember her asking me if I wanted to attend a support group for stuttering. And I was like, “No way!”, it was about the worst thing I could imagine. So, that was that for a while. Then I did all the therapy (I followed Van Riper’s book, which I had already been reading and which my SLT was familiar with) and by the end of the therapy my SLT asked, “would you like to join a support group now”? And I did want to join at that point, because I knew I’d need to do the stabilisation phase of therapy and a support group is ideal for that.
Anyway, my SLT at that point said, “Well, there isn’t a support group for stuttering in Manchester at the moment, but you can start one!”. The group has been running ever since – 15 years now!
Max
Hi Hannah, thanks for your comments! It’s certainly possible that negative experiences connected to stuttering could contribute to adults who stutter choosing not to interact with the stuttering community. Psychological therapies for stuttering have for a long time recommended that the roles of a stutterer and a fluent speaker are a focal point of discussion. This is perhaps best developed in the writings of Joseph Sheehan. Speech work is relatively straightforward in comparison to the psychological components of therapy. Unfortunately, and as you point out, some speech therapists have focussed entirely on speech work and have neglected the psychological therapy which is also necessary.
Gpod luck with the rest of your studies!
Max
Hi Max – hope you are doing well!! I have fond memories of our lunch and speaking engagements in Manchester in 2019. I have a picture of our group on my office shelf. You have worked so hard in your research and I’m thrilled for that. I did forward your survey link on to our son (who does not participate in the stuttering community – ironic?) and he was enthusiastic about taking it and learning more of your work. He’s swamped at the moment, finishing up his paramedic training while working as an EMT, so what is the deadline? I would love for you two to connect!
Oh, terrific! I was so pleased that you were able to present at University of Manchester and at Manchester Metropolitan University during your visit. Great that so many SLT students were able to hear you!
There’s no particular urgency for the survey completion. I’ve been exclusively recruiting via this ISAD 2023 online conference over the last month, but after all the awareness activity has calmed down this weekend I’ll see if I can roll out the survey in Facebook groups and so on. I’d like to get responses by the end of November, but they could come in later than that if necessary.
Perfect – I will let him know that!! Best of luck on your research!
Hi Max,
I am currently studying to become an SLP and am in a fluency course this semester. We actually had an opportunity to speak with a PWS this week during class who is starting an organization to help advocate for expansion of insurance coverage of stuttering therapy. Currently, insurance coverage of speech therapy for PWS is extremely limited, which means that many individuals will have to opt out of receiving therapy since they may be unable to afford it. I think the fact that our medical system in the US is not at all supportive of the stuttering community may cause PWS to feel stigmatized about their stuttering from an early age. I am sure the answer to why only 1% of adult PWS engage with the stuttering community is not this simple but I did think it could be an interesting and complex contributing factor!
Good thought! I can add that in!
With my own stuttering therapy, I assembled something of a multidisciplinary team. As well as the SLT, I saw an Alexander Technique teacher and a clinincal psychologist. This combination worked really well, but I think it also shows how hard effective stuttering therapy can be. For example, it would be unlikely for one person to have the skills of the entire multidisciplinary team. And, even if they did, that might not work for all – for example, for another person it might have been more beneficial to do mindfulness or Tai Chi instead of Alexander Technique; for psychological therapy I did EMDR but others may prefer CBT, ACT and so on.
Anyway, the practical difficulties of assembling an effective therapy complement may put some off anything to do with stuttering, as you suggest.
I should also add that although I got an amazing SLT without charge via the NHS in the UK, this won’t always be the case. I also have private health insurance for the psychological therapy (I went to The Priory, which is a top centre here) and I paid out of pocket for something like 20 sessions of Alexander Technique at £40 a time. Not everyone will be able to do that.
Max
Max,
I like the research that you are doing. It raises a great question that I haven’t considered before. One consideration could be that in some areas, some may not have access to the internet to access information about groups in their area. Another I considered was that maybe, culturally some may not view their stuttering as a problem that they need support for. I am very interested to see where your research leads.
Thanks!
I did include an adjustment for internet access in my international calculation. The regional and national calculations are both based on the UK, where internet access is fairly high (above 90% of adults), and my estimates include groups which can be identified and accessed without using the internet. But I agree, there is a possibility that some who stutter may not realise that a stuttering communities exist, and may not interact for that reason.
There could be several cultural reasons why some PWS don’t regard stuttering as a problem requiring support. One example is apparent from this ISAD group – stuttering is something to be proud of. However, I’m not certain whether those who feel pride about stuttering might be more rather than less likely to interact with others who stutter. Several other possibilities exist though. For example, some may feel that stuttering is not that big a deal. Others might feel as if they’ve done all they need to with regard to stuttering.
My survey (https://www.qualtrics.manchester.ac.uk/jfe/form/SV_bO7YPpJv3PD9s3k) will remain live for a while yet. So, if you or anyone else can think of other possible reasons, do please add them there! Or, email me through the contact form on my http://www.stammertime.com website.
Cheers!
Max
Hi Max
We have been wondering that too, as we see the membership fade, less people coming to events, and so few even talking about stuttering. And maybe that’s a good thing. Maybe the goal is to not be needed anymore, as all are accepted and respected, just the way we are. But unfortunately we’re not there yet.
I am a member of different organisations, some disability/illness, some hobbies, and I know of quite some dealing with sports. And they all struggle. In Sweden every local support group has to have a board, an annual meeting, loads of paperwork, and people are afraid to become members, as they know they will be asked to become a board member. Also, there’s so much information on the internet, and so many ways to interact, more and more people don’t see the need to gather.
Which is such a pity, as I myself had such an epiphany when I met others like me, I never more shut up, found myself and my voice, and even had a lighter journey when I got an illness that took me on a similar journey. So for those who still want to meet, in person, online, and for those who are looking for information, we should be out there, talking, writing, reeling, so that everyone at least has a chance to feel “I’m not alone” and “I’m good enough, just the way I am”.
Thanks for bringing up this subject.
happy ISAD and keep advertising
Anita
Hi Anita,
Thanks for your comments! I agree – for some, the need for support fades. I’ve been coding this as “at peace with stuttering”. I think it can be a good thing. There is more to life than stuttering.
The bureaucracy you describe is quite interesting! We’ve managed to avoid this so far in the Manchester group in the UK. However, we are likely to want to apply for funding soon, and this does bring in all the paperwork aspects you have mentioned. But I think it’s worth it. The in person support is so important for stuttering. It’s much more helpful in my opinion than online groups – the experience of meeting others face-to-face can be trasmformative, as you’ve pointed out. But it’s difficult to reach a critical mass to sustain local in person support. The best way to tackle this in my opinion would be to make permanent stutter cafes. I wrote about this on my blog.
What could be happening with the high churn rates – and I’m sure to mention this when I eventually write up these data – is that the stuttering community is in a steady state. By that, I mean that people join the community at the same rate as they leave. If more people were joining than leaving, the community would be getting larger. If fewer were joining than leaving, the community would be shrinking. But what we get instead is a stable community membership. And, this membership is about 1% of adults who stutter*. It’s not clear to me why it’s only 1%. But that’s the figure which comes up over and over again. We have 1% of adults in the general population who stutter, and of those stutterers 1% engage with the stuttering community – it’s 1% of 1%. Thus, the entire stuttering community (National charities, McGuire, local groups, online groups etc) is 0.01% of the general public. It’s really tiny.
One tentatitive conclusion might be that a lot of stutterers dip into the stuttering community, have a look around for a while (half a year is typical in my experience), and then move on. I hope they can find the information they need! And that they have a good time while they’re here 🙂
Max
* Some might be tempted to point out that internet stutter support groups continue to grow in subscriber count. This is true, but it can mislead. What I think is likely to be happening is that when people move on from the groups, they don’t bother to unsubscribe. Thus, it looks like the user base is increasing, but really it is staying the same, because some of the members aren’t active.
There has been something of a natural experiment for this. When the British Stammering Association launched their “STAMMA” campaign in 2019, they cleaned their mailing list by requiring everyone to resubscribe. The result was that membership dropped from from 3,731 to 1,930. The membership then grew gradually at a rate of between 100–150 per month, with the most recently published figure (end of 2022) being 3,638. These figures are all taken from their Annual Reports.
I don’t think growth has been slow for lack of trying – they’ve gone all out on the STAMMA campaign. Rather, what I think is happening is that people on the mailing list are becoming inactive at the same rate that they are joining. Thus, the steady state is between 100–150 joining every month, and approximately the same number becoming inactive every month. It would be useful if the STAMMA campaign could help us to find out if this is the case by cleaning their mailing list again.