Self-Stigma as a Reflection of Public Stigma in PWS: A Comparison of Two Studies – Tricia Hedinger

Tricia HedingerAbout the Author:

Tricia Hedinger, MS, CCC-SLP, BCS-F is a clinical associate professor at the University of Tennessee Health Science Center in Knoxville, TN.  She is a Board Certified Specialist in Fluency Disorders and has been a support group leader since 2013.  Ms. Hedinger has published multiple articles related to stuttering, presented at national and international conferences, and co-authored a book titled “Bullyblossom: A Tale of Overcoming Bullies & Embracing Stuttering to Live a Life of Achievement.” She is the Vice Chair of the World Stuttering Network (WSN) and host of the “Stutter Stories” podcast.

Lifelong stuttering is well known to impair communication and negatively impact an extensive range of affective, cognitive, and social functions [1]. One additional penalty associated with stuttering is its stigmatization. Stigma is broadly defined as a set of negative traits that stereotypically mark individuals, discrediting them, and placing them at a social disadvantage. For individuals with mental health challenges, that would include many with lifelong stuttering, the World Health Organization has stated that overcoming stigma within their community is the single most important barrier [2].

For years, personality assessments have been administered and analyzed to reveal only small measurable differences between people who stutter (PWS) and people who do not stutter (PWNS).  However, there is ample evidence describing stereotypes of PWS as being shy, nervous, socially phobic, withdrawn, anxious, and introverted.   The results of personality studies comparing PWS to control groups did not align in magnitude with the prevailing stereotypes perceived by the general public.[3-9]  In response to this perplexing misalignment, researchers designed two studies to better capture the stigma associated with stuttering by examining perceptions of personality differences rather than actual differences.

The NEO-FFI is an extensively used instrument that has been employed to identify personality differences between those who stutter and matched controls or group norms. To quantify evidence of public stigma through use of social comparison, Banerjee et al (2019) conducted a study asking 49 fluent speakers to complete the NEO-FFI once as themselves and once as if they stuttered.  After watching a video of a PWS, participants were asked to imagine they had stuttered for their entire life then take the quiz.   Compared to their true personalities, fluent speakers perceived their dysfluent counterparts to be significantly more neurotic and less extroverted.  These findings strongly contribute to evidence of public stigma (at least as it relates to personality).

On the flip side, a study conducted by Hedinger et al (2021) asked 30 PWS to take the NEO-FFI once as themselves and once imagining they had never stuttered.  Compared to their true personalities, those who stuttered perceived their fluent counterparts to be significantly less neurotic and more extroverted.  No other categories were significantly impacted.  PWS cognitively separated themselves from their fluent counterparts, seeing their true selves in a negative light compared to their fluent counterparts. This “us” vs. “them” separation is considered evidence of self-stigma related to personality in PWS.

So why are perceived differences so much greater than the real differences and why is this important? 

These are the first studies employing mentalizing and social comparison to assess the perceived impact of stuttering on personality. When comparing the Banerjee and Hedinger studies, it is evident that self-stigma reflects public stigma. Fluent speakers perceived living as a PWS to have a negativehave negative impact on personality in the domains of Neuroticism and Extraversion. PWS rated their fluent counterparts more positively in the same domains. In other words, both PWS and PWNS indicated that neuroticism and extraversion would be adversely impacted by lifelong stuttering. This similarity suggests that self-stigma mirrors public stigma. This mirroring is plausible considering that self-stigma is thought to arise from the internalization of negative stereotypes that are propagated via public stigma. It is consistent with the notion of a “looking-glass” self, in which individuals adjust their self-perception to match the perception of others [10].

Minimizing stigma continues to present a strong challenge in the field of stuttering. Given that stigmatization theoretically begins in the public, followed by internalization by PWS, it seems logical to promote accurate public education.  As public attitudes are slow to change, clinicians continue to be tasked with treating the self-stigma that underlies many of the psychological aspects of stuttering in their clients.  Assessment tools, such as the Overall Assessment of the Speaker’s Experience of Stuttering (OASES), can be administered to aid in identification of self-stigma, along with social comparison tasks and discussion.  Treatment approaches, such as cognitive behavioral therapy (CBT) [11-12] and acceptance and commitment therapy (ACT), can be combined with desensitization, education, self-disclosure and support group attendance to aid in reduction of self-stigma.

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Self-Stigma as a Reflection of Public Stigma in PWS: A Comparison of Two Studies – Tricia Hedinger — 28 Comments

  1. Thanks Tricia!
    This is such a great paper and crucial research for our field. It demonstrates, as clinicians, we must include this aspect of stuttering in the therapeutic process. Treatment protocols need to be more than just “speech modifications” and more holistic to address this multi-factorial communication difference. I predicted that the fluent speakers’ perception would be different from the person who stutters. How interesting to see them align. So, telling our clients “people don’t care, it is not a big deal” etc contributes to toxic positivity and decreases our clients’ trust in us.
    Thanks again for this important work!

  2. This was really insightful and I appreciate having the opportunity to read about the research you conducted. My question reflects the divide between PWS and PWNS. How can we close the gap on the social stigma? What are some suggestions about what not only clinicians but family members, friends, colleagues, etc can do to help close/minimize this social stigma?

  3. Great question. Public stigma is so slow to change. Boyle’s article tells us there are 3 approaches to combatting social stigma: Contact, Education and Protest.
    -Having people who stutter be seen and heard in everyday media (e.g., movies, news, radio, social media) where roles are positive or neutral or unrelated to stuttering is a great start. Having a stutter present in a show without the show being about stuttering is a great next step for film and tv industries.

    -Conducting conferences (like this) that exchange ideas about stigma are helpful, especially when articles are then shared with the general public.

    – Writing blogs and news articles that are distributed outside of the stuttering communities is another method for helping the public better understand stuttering.

    -Billboard campaigns with catchy slogans and informative messages have surfaced in the UK.

    -Teaching children about neurodiversity and stuttering before they develop negative attitudes or stereotypes can point the next generation down the right path. I had an 8-year old boy report that his teacher read a book in class about how kids can be different in many ways. The book mentioned stuttering and he raised his hand and proudly said “I stutter!” without an ounce of reserve.

    – When PWS are poorly represented in the media or false information is given, protest! Call a new station, write to a show’s producer, sign the petition… and tell them they are wrong.

    There is not one magic solution. Changing public mindset is an arduous task that takes time and commitment from many activists and everyday people. Let’s keep at it!

    • Hi, Tricia! Thank you for sharing 3 approaches to combatting the social stigma of stuttering: Contact, Education and Protest. I have learned so much from your writing.
      Bolye’s paper is Boyle, M. P., Dioguardi, L., & Pate, J. E. (2017). Key elements in contact, education, and protest based anti-stigma programs for stuttering. Speech, Language and Hearing, 20(4), 232–240.

      • Thanks, Yoshikazu! I appreciate all the efforts you have made to spread the word in Japan using your YouTube channel. We love having you on the World Stuttering Network Board. You make such fantastic contributions to the stuttering community!

        Tricia 🙂

  4. Tricia Herdinger,

    This was incredibly insightful to read and provides vital research for SLPs in areas they need to target during treatment to provide counseling alongside fluency modification. In your article it was mentioned that support group attendance could be beneficial for reducing self-stigma. Are there helpful ways to initiate this discussion during treatment, and along with this, when is the appropriate time during the therapeutic process to recommended group support as an option?

    • I would start recommending it from DAY 1 of therapy. Hand a flyer out with a QR code to a Zoom link. Have a flyer hanging in a clinic lobby. I usually start with a question. “Here’s some information on a support group where you could meet other people who stutter. How would you feel about attending something like this?”

      If they are not ready, let them listen to a stuttering podcast (e.g., Stutter Stories”)

      Thanks for reading. Tricia

  5. Hello Tricia

    Thank you for this very interesting article.
    Some thoughts/questions:
    – It would be interesting to see the questions asked in the personality assessments that revealed “only small measurable differences between people who stutter (PWS) and people who do not stutter (PWNS). We – PWS and therapists like yourself – know that stuttering affects the way we interact with society, and it affects our self-talk. Perhaps stuttering does not affect the basic personality, but rather some of our behaviors?

    – Since changing public stigma is slow, as you wrote, I feel that the emphasis for us PWS and our therapists should be on making change in our perceptions and beliefs about ourselves. So, we can change our self-stigma even if the public stigma is not changing. Sure, it’s very hard to do, but it can be done, and is best done with the proper support environments. In other words, can we break the connection between public stigma and self-stigma? For me personally, there are writings from outside the world of stuttering that have been helpful, such as those of Brene Brown, and a multitude of teachers in the areas of Mindfulness and Stoicism. How do you suggest that that could be done?

    – In a workshop that I gave at STAMMAFest Global on Public and Self Stigma, one participant shared that he feels self-stigma that is not triggered by public stigma. It was very interesting to learn this, as I had assumed there was always a direct correlation. Have you encountered such cases?

    – Rita’s point that “telling our clients “people don’t care, it is not a big deal” etc contributes to toxic positivity”, and that saying that does not help at all, is so true and so important. Perhaps this further emphasizes the need that we – PWS- take responsibility for our own thoughts and beliefs. Easier said than done, and the “responsibility” word is often difficult to hear or to teach. This is related to the above questions – how do we teach, with compassion, personal responsibility?

    I spoke just today with the mother of a 20-year old PWS. This person has an accepting family and is yet driven by his belief that he is not good enough, deepening his social isolation which then deepens his self-limiting thoughts and beliefs. I am intimately familiar with this experience. The point is, I guess, the world needs much more accessible, affordable, high-quality treatment that focuses on action-driven values while understanding and rejecting public stigma. In Israel, and perhaps other countries, high-quality treatment is neither accessible nor affordable. There are more and more online support groups, but very often getting the PWS to start attending is a huge challenge. Anyway, just some thoughts on what real change might entail. Do you have thoughts on this?

    Thank you very much
    Hanan

    • Hi Hanan… you have a lot of great questions. I think breaking the connection between public stigma and self stigma would is an excellent goal. Easier said than done, I feel. To me, I think one of the most valuable thought processes to adopt is “they just don’t know anything about stuttering. They don’t have the experience to know what is going on or what to do.’ I think this applies with anyone’s struggle that is lesser known.

      I think Rita’s suggestion is spot-on. I think it might be a little more accurate to say “No one will ever care about it a much as you do.”

      Treatment needs to be affordable and start early early early. Those are the two biggest improvements we can make. We can prevent decades of well-intentioned parents, caregivers and teachers from saying the wrong things.

      Thanks Hanan! This could be a great discussion some day!

  6. Hello Tricia,

    These studies are revealing and, honestly, a little sad. The idea that the public views PWS as more neurotic, less likely to be extraverted shows how far we need to go in educating the public. The revelation that PWS, when imagining themselves as PWNS view themselves as less neurotic, more extraverted show how much the public perception and stigma affects the PWS community. As a future SLP, I would like to know how the clinician can build rapport with the client and help them see themselves as they truly are.

    • Hi Mary Lynn,

      You are correct. This study does demonstrate how far we have to go in educating the general public and ensuring we help our clients manage thoughts, emotions and behaviors connected to self-stigma. Since changing public opinion is a slow tedious process that often occurs over generations, the SLP has a lot of responsibility for addressing management and prevention of self-stigma. Treatment approaches such as Cognitive Behavioral Therapy and Acceptance and Commitment Therapy can assist individuals in becoming a self-advocate, changing their own mindset, responding to comments/looks, and reducing the idealization of fluency. Joining support groups and connecting with others who stutter can also be helpful to increase feelings of solidarity and change perspectives.

      Thanks for reading!!

  7. Thank you for your thought provoking article. Although personality assessments reveal only small measurable differences between people who stutter (PWS) and people who do not stutter (PWNS), my personal experiences tell me otherwise. I am a stutterer. Having been a stutterer for seven decades, I have observed many stutterers. The problem with personality assessments is that they compare a stutterer with another hypothetical average normal speaker. When I see a stutterer (including myself), I imagine how he would behave if he was not a stutterer, then the difference is stark. I recount my experiences as negative impact of stuttering on my own personality in my article (Under N. Sanjeeva Murthy) that I have for this ISAD session.

  8. You are exactly right! We noted that the personality studies comparing PWS to fluent speakers were not showing differences in magnitude comparable to the stigma associated with stuttering. That is why we elected to do a within subject design using PERCEIVED personality differences. Participants took the personality test as themselves and then again imagining what they would be like if they had never stuttered. This is where we started to see differences that matched the general stereotypes. So i think we conducted just what you are suggesting.

    We also had fluent speakers take the test as themselves and then again imagining that they stuttered. As you will read in this article, the exact same personality categories were impacted with similar magnitude. These two studies demonstrated how self-stigma mirrored public stigma.

    Thanks for your comments! Tricia

  9. Tricia,

    This article was very interesting to read and very insightful into the differences between perceived and genuine impacts of stuttering. I agree that a large component of changing the stigma surrounding stuttering is education. As a future SLP, I hope to facilitate this education to the public and to help PWS with their personal self-stigma.

  10. Hello Tricia!

    I found this article to be very insightful. I personally believe there needs to be a shift in the way people who do not stutter communicate with people who stutter, rather than the other way around. By creating an environment that is inclusive and patient, we can shift the mindset and self-stigma of a person who stutters. As an SLP graduate student working with a patient who stutters, I have learned about indirect therapy approaches, such as slowing rate of speech, increasing pauses, and decreasing questions. I feel like these approaches are very beneficial and can be used outside of therapy. These approaches create an environment in which a person who stutters can feel more comfortable and may shift their negative self stigma to a positive one. Thanks again for your important thoughts!

  11. Hello Tricia,
    I am a senior majoring in communication disorders with a focus in speech language pathology.
    Thank you for highlighting this comparison between these two studies. It demonstrates that public stigma impacts the self image of stuttering, and why it is important to work on the stigma.
    What is something you would like SLPs to take away and how can they implement in their work?

    Thank you for you time!

    • Be sure to treat the whole person. Think of all the struggles they deal with in everyday life. Give practical solutions to dealing with them. Help prepare people for situations they might have to deal with. Thanks for reading!

  12. Hi Tricia! This was a really insightful piece. It was interesting to read how self-stigma mirrors public stigma. Working towards minimizing this stigma should continue to be a priority in the field. Having access to conferences like this is a really interesting and interactive way to close the gap on the social stigma that is associated with stuttering. Thank you for sharing!

  13. SLP students reviewing the article: Angelique Dominguez, Kayla Dewey, Kristen DeJuilo

    This is an insightful review of some articles about self-stigma regarding PWS. When doing therapy for PWS, it is essential to talk about their perspective of their stutter versus the public views of themselves and their speech.

    A question I have for you is: What is our role as clinicians to minimize public stigmatization and educate individuals about stuttering? If this is a responsibility for us as clinicians, What resources are available to distribute or promote involvement?

    Thank you in advance for your insight!

    • Great question! share info with people in the area… write blogs, newspaper articles, flyers, social media posts, etc to let the general public know more about stuttering. Learning a little and sharing a little helps the word spread. If SLPs work in schools, make bulletin boards, hang flyers, etc. to let people learn more about stuttering.

      Glad to have you here! Tricia

  14. Hello Tricia,
    Thank you for your review of the stigma of studying it was really insightful to read. I wonder what can clinicians do to minimize the stigma and what resources should we give to clients to help the most?

    • Give clients access and opportunity to meet other people who stutter! Help them to hear the voices of people who stutter if there is no immediate access to a support group. Recommend a podcast, a Facebook group, an online meeting….get them connected. Thanks for reading!

  15. Hi Tricia,
    I loved reading this article as you point out the importance of challenging public stereotypes of stuttering. I love what you said in the comments about destigmatizing and challenging stuttering perceptions through education, contact, and protest. As a graduate clinician, I hope to do this both during and outside of therapy. Addressing a PWS’ perceptions of themself is vital for speech therapists to help their clients communicate with more confidence.

  16. Thank you for doing what’s so important! As yes, society still thinks we need to be fixed, instead of just being happy and wanting to talk, no matter how. So not only parents need to get this message, but also teachers, other family members, parents to friends, etc. That’s why I so wish also these were invited in the therapy room, or an SLP or PWS coming into the classroom, library etc. The stigma needs to be fixed, and we’re so happy you’re helping us with that.

    Keep them talking

    Anita