Stuttering Disclosure Card

What is Stuttering?

My favorite definition of stuttering comes from the book Stammering Pride and Prejudice: Difference not Defect1 -

“Stammering (or Stuttering) is a neurodevelopmental difference that leads to a breakdown in the forward execution of speech sounds produced in the context of language, compared to societal norms.”

While this definition may seem dense (and I unpack it further in the Thoughts and Reflections section), I like it because it not only talks about stuttering’s physical characteristics but also highlights its neurological foundation. The breakdowns (or disfluencies) mentioned most often appear as repetitions, prolongations, or blocks 2.

The word difference here deserves a spotlight. It is key as it signifies that stuttering is not a defect or a flaw, but rather a difference in how people communicate. It affirms that there is nothing inherently “wrong” with stuttered speech.

How to Collaborate with People Who Stutter (PWS)

Curious about how best to collaborate with PWS or support them? Give this a read and hey kudos for the thoughtful efforts!

  • Be Patient: Just like everyone else, PWS deserve their time and space to speak and get their thoughts out. While it could be tempting to complete their words and sentences for them (with the intention of “helping” them out), it seldom is helpful. Sure the conversation might take an extra second or two but even in this ultra fast-paced world, one would hope that it is not too much to ask.

  • Refrain from Giving Advice: You know how they say not to make jokes about someone’s name because at best, they have heard the same joke numerous times, and at worst, it could be in bad taste. The same idea applies to stuttering. You may think you have excellent advice about stuttering but it doesn’t help to share that with PWS. Believe me, we have heard every “advice” and “cure” under the sun thousands of times in our lives. From “Relax”, “Just take a deep breath”, “Don’t feel nervous” to “Try to speak slowly”. Don’t you think we would have already tried all these things and would be doing them, if they actually worked? This is a good place to mention one of the most common misconceptions about stuttering: “Stuttering is purely psychological and is caused by nervousness, stress or anxiety.” This is unequivocally false. In truth,

Stuttering stems from neurological differences in the human brain. Stress, anxiety, or nervousness may exacerbate stuttering but they are not the primary reason.

  • Just Ask: Lastly, it is never a bad idea to ask questions if you are not sure what to do or want to know more. Most PWS would appreciate you asking how best to work with them.

Stuttering Misconceptions

As with any other difference (especially the neurodivergent ones), there are a lot of misconceptions about stuttering. I made this infographic to help dispel some of the most common ones. In the past, I have shared this around my neighborhood and my workplace during National Stuttering Awareness Week (NSAW) and International Stuttering Awareness Day (ISAD) to help raise awareness. Feel free to use it however you like!

Download your pdf copy here.

Stuttering Misconceptions

Leadership & Engagement with the Stuttering Community

I have been fortunate enough to be involved deeply with the community over the years - as a participant, a volunteer, and a leader. To the extent of my leadership capacities, I:

  • Co-lead the National Stuttering Association’s (NSA) Seattle Adult chapter where I organize monthly social meetings and annual advocacy events, facilitate discussions, and help create a safe space for PWS in the Seattle area.
  • Advocate for PWS in the workplace through NSA’s WeStutter@Work Committee. We help eliminate workplace stigmas and improve employment outcomes for people who stutter. We aim to drive positive change in hiring practices, promotions, and professional development, ensuring an inclusive and supportive work environment for all.

A note about the stuttering community: People in the stuttering community are some of the most welcoming, loving and kind individuals I have ever met. The acceptance and support I have received from the community have been life-changing. Anyone who stutters can tell you that stuttering can be a very isolating experience. So getting involved with the community feels like you are amongst your people and are a part of something bigger. If you or anyone you know stutters, I highly recommend getting involved with the community (see section Resources for a list of organizations). It is a great way to meet other PWS, share experiences, and learn more.

Thoughts and Reflections

Like any community, people within stuttering community hold a wide range of perspectives on key issues, such as chasing fluency, experience of struggle and the need of therapy, the role of our community, and how we fit into the broader disability movement, among other topics. What you’ll read in this section is my take—shaped by personal experience.

So here’s the mandatory disclaimer before we dive in: I am not a researcher or expert in the field. But I am someone who has stuttered all his life and has spent countless hours talking to other PWS (with all kinds of experiences and perspectives) and professionals like Speech-Language Pathologists (SLPs).

Why not “Fluency”?

This is probably one of the biggest points of discussion in the stuttering community. The traditional school of thought and associated therapy strategies have largely focused on achieving fluency. Speaking fluently (or always striving to) and fitting in with societal norms is the only goal for many SLPs and PWS. I belong to the camp that rejects this notion and will give my reasons as to why:

  • There isn’t conclusive evidence to suggest that adults who stutter can achieve long-lasting fluency. In fact, many adults who stutter report that they have tried numerous fluency techniques and therapies over the years, only to find that they still stutter outside of the therapy room or resumed stuttering once the therapy was over. Statistics3 show that 80% of children who stutter outgrow it by adulthood—which leaves about 20% of people who continue to stutter into adulthood. Studies have shown 4 that early intervention during childhood can have lasting therapy outcomes due to neuroplasticity and the brain’s ability to adapt. But for the rest of us (the lucky 20%), stuttering will be here to stay.

  • With scientific studies out of the way I want to implore you- the reader, to take a moment and think about what the worry is with stuttering. Why is stuttered speech even a problem in our society? Communication, in its very basic sense, is about the exchange of information. So as the speaker, if you can convey your message (whether fluently or not) to the listener, then you have successfully communicated. Then why the obsession with fluency? It is a very valid point to consider intelligibility and efficiency (efficiency - only to a certain degree as fluent people also aren’t always efficient). But as long as the speech lies within those bounds, I don’t see a reason why fluency should be the goal. By complying with the societal norms of fluency, we are essentially saying that we as a society are not okay with hearing a different speech pattern; and that we are not okay with the fact that some people may take longer to get their words out. When we readily accept differences in accents and dialects, why not accept the difference of stuttering? I am reminded of this quote from Dr. Vivian Sisskin 5:

I believe that problems from stuttering would be fewer if society (and stutterers themselves) had greater tolerance for variations in speech fluency.

  • Lastly, I want to point out what we lose out on by giving into the obsession of fluency and what the cost of chasing fluency is. Story Time: One popular fluency shaping technique is called “prolongation” where the speaker is taught to stretch out syllables and words. This is usually accompanied by a slow rate of speech. When I was taught this in therapy, I was able to achieve a high level of fluency but my speech sounded very robotic, monotonous, and unnatural. I felt like an impostor and didn’t find spontaneity in communication. Chasing fluency often leads to such experiences where the speaker is forced to suppress their natural speech patterns. This can lead to a loss of identity and authenticity in communication. For me— having joy, confidence, comfort, spontaneity, and efficiency (the five outcomes of ARTS 6) in communication is far more important than fluency.

To Therapy or Not to Therapy?

Many PWS go through speech therapy at some point in their lives. The goals may differ for each individual: from achieving fluency to managing stuttering, to improving communication skills and confidence, etc. Similarly, the outcome and experience of therapy can vary widely. Some PWS could find therapy to be helpful and empowering while others may have a more complex relationship with their therapy– finding it unhelpful at best and harmful at worst. At the end of the day, it is a personal choice.

While I have talked about the downsides of fluency chasing therapy approaches above, there is also a cohort of PWS and allies who don’t resonate with the idea of engaging in any form of therapy. This viewpoint stems from the belief that all manifestations of stuttering and the secondary behaviors associated with it are natural and should be embraced without intervention. According to this perspective, the community’s focus should center solely on acceptance, pride, and advocacy. I find elements of this philosophy compelling. In an ideal world (or perhaps in the near future?) where stuttering is fully accepted by society, children who stutter would not internalize negative perceptions or develop self-stigma. They would be less likely to develop struggled speech or adopt secondary (avoidance) behaviors. They would speak freely, without fear or shame—proudly showcasing stuttering in all its raw form & pure glory.

However, the current reality for many adults who stutter is a bit more complex. For many, stuttering is accompanied by self-stigma, significant struggle and even physical discomfort. Why should one suffer through that? Isn’t speaking supposed to be a joyful experience? So I believe that therapy, which is focused on helping individuals reduce struggle, get rid of self-stigma and rediscover the joy of speaking, has a valuable and necessary role within our community.

Can’t you just hide it?

Many PWS are able to hide their stuttering by using a host of secondary behaviors like avoiding certain words, using fillers, etc. This is often deemed “successful” as the listener stays unaware of the fact that the speaker stutters. You would be surprised to know how many PWS are able to go through the majority of their lives without letting their friends, family or colleagues know that they stutter.

While the listener may not be privy to the fact that the speaker stutters, the speaker’s mental real estate is very much occupied with stuttering at all times. Hiding or “masking” stuttering requires a lot of mental energy and could be exhausting. The speaker does a lot of mental gymnastics, jumping through various hoops to avoid stuttering—cycling through synonyms and similar phrases, using fillers or avoiding a situation altogether. The Stuttering Iceberg metaphor 7 is a great way to visualize this. What the listener sees/listens to is just the tip of the iceberg. But the speaker is battling a lot of internal struggles that are hidden below the surface.

Not only is this be very taxing for the speaker, but it also brings us back to the topic of complying with unfair societal norms that we talked about above. Additionally, it perpetuates the stigma around stuttering and reinforces the idea that stuttering is something to be ashamed of. If you look at the other side of the coin, stuttering openly is not only a powerful act of self-acceptance, but it also helps to normalize stuttering and reduce stigma. By being open about stuttering, PWS can help to create a more inclusive and accepting society for everyone. Every stutter that you let out in the world is a form of advocacy and a step towards acceptance.

Defect vs. Difference

Viewing anything as a defect puts the entire onus on the individual to change and fix the defect. A larger conversation could be had about what even constitutes a defect and who gets to decide that. But tabling that for now, I do want to touch on the different models of disability. These models serve as lenses through which one can view disabilities. The social model posits that disability is not an inherent trait of the individual, but rather a result of societal barriers like a flight of stairs blocking access to a building. The political (or relational) model states that such structural issues do no exist in isolation, but are rather the result of relations between people and their environments 1. Who did we design our spaces for, who can access them and who did we exclude? When viewed through this lens, disability is simply the result of a mismatch between our bodies and the designed environments— “an attempt to fit a square peg into a round hole”. In the context of stuttering, PWS may face problems because the automated menus at telephone hotlines are not designed to accommodate stuttered speech, nor are the AI voice assistants. Conversational standards in this fast-paced world, with extra emphasis on speed and efficiency, are not designed to accommodate stuttering either. Highlighting such examples of mismatch helps to understand that the problem is not solely with the individual, but rather in the relation between the stuttered speech and the existing environments. When viewed through this lens, one can easily see why stuttering would be considered a difference - a difference from how “normal” people speak, for whom the environments were designed.

Note: This section is heavily adapted and influenced from the book Stammering Pride and Prejudice: Difference not Defect1. It is really good read and explores deeper themes of stigmas, stuttering as a difference, relation to the disability movement, stuttering activism, etc.

Further readings: People much more qualified than me have written extensively on these topics. I would urge you to check out some of their work listed in the Resources section below.

Resources

References

  1. Stammering Pride and Prejudice: Difference not Defect by J.R. Press ↩︎ ↩︎ ↩︎

  2. https://www.asha.org/public/speech/disorders/stuttering/ ↩︎

  3. Facts About Stuttering - https://www.westutter.org/post/facts-about-stuttering ↩︎

  4. Chang, Soo-Eun. “Research updates in neuroimaging studies of children who stutter.” Seminars in speech and language vol. 35,2 (2014): 67-79. doi:10.1055/s-0034-1382151 ↩︎

  5. Sisskin, Vivian. “Disfluency-Affirming Therapy for Young People Who Stutter: Unpacking Ableism in the Therapy Room.” Language, speech, and hearing services in schools vol. 54,1 (2023): 114-119. doi:10.1044/2022_LSHSS-22-00015 ↩︎

  6. Outcomes and Recovery - Avoidance Reduction Therapy for Stuttering (ARTS®) ↩︎

  7. Stuttering Metaphors - The Stuttering Iceberg ↩︎