It Takes One Person at a Time to Change the World (Elizabeth Nguyen)

About the author: Elizabeth Nguyen is my full name, but I prefer Lisa. I live in North Carolina in the United States. I am interested in advancing my credentials in working with the older adult population with further schooling and currently exploring my options. I have direct experience working with older adults as a Nursing Assistant in private homes as well as residential facilities, and have completed a one-year Graduate Certificate in Gerontology. In addition, I volunteer with a Hospice and Palliative Care organization to support the patients who reside in a hospice care facility.

I believe that a world that understands stuttering will only be achievable with the self-advocacy efforts of every person who stutters (PWS). I agree with Francek’s (n.d.) assertion that the practice of self-advocacy develops self-confidence, nurtures self-acceptance, and encourages understanding about stuttering in daily life. Self-advocacy begins with being open and honest about stuttering, in spite of the general population’s limited knowledge and exposure to people who stutter. In addition, a peer support group can also facilitate the growth of a more positive attitude about oneself as a person who stutters and aid the process of self-advocacy as a PWS.

Peer support is an integral component of self-advocacy. There are five members of my National Stuttering Association Chapter who voluntarily keep in contact outside of the monthly Chapter meetings to form an informal group called Speech Buddies. This group was formed because of members’ belief that only talking to each other during the Chapter meetings was not enough. The group has exchanged contact details and uses internet applications to have group meetings, such as Google Hangouts. Speech Buddies functions as an informal peer support group that is available to discuss stuttering-related questions and ways to improve communication skills. Group members can also practice for any type of challenging speaking situation with one another. Peer support facilitates the development of healthier attitudes about oneself as a PWS through awareness that there are other people who have encountered similar situations in their daily lives and can truly understand. Listening to another person’s perspective on how to respond to a particular situation can empower a PWS to be assertive when he or she meets people who do not stutter and have narrow exposure to PWS.

Although national self-help organizations for individuals who stutter conduct outreach to educate the general public about stuttering, stuttering is still considered a low-incidence disorder with an occurrence in 5% for children and 1% of adults. (National Stuttering Association, 2015). Therefore, there can be misunderstandings and ignorance among the non-stuttering population.  PWS frequently hear well-intended advice, including “Slow down,”  “Take a breath and think about what you want to say,” and “Relax.” Although intended to be helpful, such simplistic advice by people who do not stutter does not take into account the complexity of stuttering (National Stuttering Association, 2015). A complex multi-factorial interaction of genetic, developmental, and/or neurophysiological factors may cause stuttering. Although the person is aware of what he or she wants to say, the difficulty lies in articulating the words (The Stuttering Foundation of America, n.d.). Individuals who do not stutter may not know how to react, but PWS can play an important role in creating a world that better understands stuttering. PWS can educate their listeners about stuttering by being willing to honestly answer any questions and inform listeners about how to respond appropriately during instances of stuttering (National Stuttering Association, 2015).

Non-stuttering individuals may have met a PWS in a specific setting and overgeneralized what they felt was helpful to all PWS. I have had a personal experience with this. Several months ago, I attended an information session about volunteer opportunities at a local non-profit organization and everyone was expected to say their name, in addition to why they were seeking to volunteer. I stuttered saying my name. The Volunteer Coordinator did not react to the stuttering, and only responded to what I had said about my reasons for volunteering. Then, she moved on to the next person. I appreciated the Volunteer Coordinator’s willingness to listen and move on without comment about the stuttering. After the session, I was walking to the Volunteer Coordinator to ask a question while one of the attendees was walking up to me with a note in her hand.  This attendee said to me, “I wanted to give you this. I’ve worked with kids in Special Education and it really works.” I looked at the note and read, “Did you know that if you put your fingers or ear plugs in your ears while you speak, your stutter goes away?”

There was a lot I wanted to say in response, but I was in a hurry to speak to the Volunteer Coordinator and I anticipated that I would struggle to speak if I took the time to respond. I would have wanted to say that her suggestion was completely impractical and inappropriate for both children and adults who stutter, nor did I believe that any clinician with expertise working with stuttering would give this suggestion. I saw this attendee was still standing there, waiting for my response. Since I believed that this person truly intended to be helpful, I only said, “All right, thank you,” and watched her walk away. This suggestion was based on her limited experience working with children who stutter, and lack of exposure to adults who stutter.

Recently, I have felt empowered because I had chosen to speak up and inform someone unequivocally about what is helpful and what is not when listening to me speak, no matter what my words sound like. I work as a Nursing Assistant in home care and one of my clients made a comment about my taking too long to speak. I replied with honesty and without apology that although it may take me a long time, I do work hard to say what I want and what is most helpful to me is for my listener to be patient and not interrupt. My client had a positive response to my honest feedback. I have also spoken to friends and family about how to respond to instances of stuttering. I believe that the world can begin to be a kinder place to PWS through open, honest communication in all interpersonal relationships and for PWS to empower themselves by finding their voice. Finding your voice shows the world that what you have to say has value, and that you are entitled as a human being to be heard.

References

Francek, C. (n.d.). “Being your own best advocate.” Retrieved August 2, 2017 from  http://www.westutter.org/wp-content/uploads/2016/12/Being-Your-Own-Best-Advocate.pdf

National Stuttering Association (2015). “Notes to listeners.” Retrieved August 6, 2017 from http://www.westutter.org/wp-content/uploads/2016/11/NotesToListeners-12-2015.pdf

The Stuttering Foundation of America (n.d.). “F.A.Q.” Retrieved August 6, 2017 from http://www.stutteringhelp.org/faq

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Comments

It Takes One Person at a Time to Change the World (Elizabeth Nguyen) — 42 Comments

  1. Thank you for your article. I think raising awareness of a stammer and the impact it has on the PWS’s whole life and not just speech is essential in supporting people. This needs to come from the perspective of individuals who stammer, as everyone’s experience is different, but general education in covert behaviours is also needed which could be shared by anyone. I love your last line, as I firmly believe that everyone has the right to have their voice heard.

    • Thank you for your feedback! I agree that every PWS has a different experience, and that a person with covert stuttering can have a very different experience. More general education is needed.

  2. Hello Lisa,

    As a student, I want you to know that I appreciated the evidence-based background you gave on the incidence of stuttering and the information that there are multi-factorial components of stuttering including genetic, developmental, and/or neurophysiological factors. I realize science is always changing. I often wonder how I would respond in situations such as the one that you experienced when an anecdotal remedy from the special education teacher was given to you. I am currently in the health field and hold firmly to the fact that EB practice supports the gold standard of care. I was surprised to hear that this came from an educator. I appreciate your path for self-advocacy to help empower yourself, and I believe science supports this belief. Take care and thank you for all you do!

    • Thank you very much for your response! I am mystified about the background of the person who gave me the unsolicited advice. I have heard that what she suggested is not being taught to children who stutter. All the best to you in your endeavors as a student and beyond!

  3. Hi Elizabeth – I love this paper. Thank you for contributing to the ISAD conference. Talking about self advocacy is so important. And acknowledging that peer support is an integral part of self advocacy is key as well. I’m sorry you had that experience with the professional who told you to put your fingers in your ears to stop stuttering. I probably would have told her where to stick her fingers, which wouldn’t have been nice. Your reply was probably best, even though it might not have felt too empowering. I totally agree with your assertion that it takes just one person at a time to change the world. Thank you for what you are doing.

    • Thank you for your feedback! I had to laugh at what you would have said in response. I do believe that this professional needed to be educated about how to appropriately respond to children and adults who stutter. I wish I could have said something then, but being kind and letting it pass seemed to be the right thing to do at the time.

  4. Thanks Lisa,
    …For giving us a beautifully written account of self advocacy!
    I loved your statement: “the practice of self-advocacy develops self-confidence, nurtures self-acceptance,” I think that this is key in helping people develop advocacy skills.

    • Thank you, Rita! I believe that self-advocacy requires a life-long journey to develop those advocacy skills, with a lot of support along that journey!

  5. Lisa, from one Speech Buddy to another, congratulations on a wonderful paper! I could not agree more that “Self-advocacy begins with being open and honest about stuttering” and that “Peer support is an integral component of self-advocacy.” Thanks for your openness and honesty in telling totally relatable stories about your own complicated adventures in self-advocacy. We may not always do it perfectly, and there may be choices to make about how and whether we decide to self-advocate in any given moment. But I am glad we have our little group to support us along the way!

    • Thank you, Rob! I think you expressed it very well that we may not always do a great job in self-advocacy and that we can always make the choice whether to do so or not. I am grateful too to have our peer support group.

  6. Hi Lisa,

    While reading your paper, I could truly feel your passion and the intensity you wrote with. As you said, it starts with one person to change the world. Your paper is truly inspiring and has helped me to realize the importance and power that self-advocacy has. It is sad that the world is so out of tune and not informed. Your words have helped me to realize I need to educate others in order to hopefully make a difference.

    • Thank you for saying that! That really means a lot, and I wish you the best in your efforts to develop your self-advocacy. I do believe it is a process, and I hope you will find your efforts worthwhile.

  7. Hi Lisa. Thank you for your wonderful paper, and for helping us learn about self-advocacy. Further to “what you have to say has value, and that you are entitled as a human being to be heard”, perhaps we can add that what we have to say has value, without being modified in order to avoid stuttering.

    Thanks a lot!

  8. Thank you for sharing your insights and empowering PWS to have the courage make encounters with others a “teachable” moment on stuttering.

    Always Michael

    • Thank you, Michael, for those kind words! All the best to you,too. PWS and their allies do need to have more “teachable” moments to help create a world that better understands stuttering, although it may be a long process.

  9. Oooof, incorrect, well-intended advice is often the hardest to respond to. You are wise to pick your battles and focus on what you wanted to accomplish (speaking to the volunteer coordinator), instead of spending your time correcting someone you may not ever see again. You handled yourself confidently when you spoke to your patient about conversations — and that conversation was so much more important. A great story, thank you for sharing your experiences.

    • Thank you very much, Virginia! Choosing to speak out is always more difficult, but it is worthwhile in the increase in self-confidence when one chooses to do so.

  10. Thank you for sharing this! I used to work in a coffee shop and my boss was a PWS, and I was often unsure of what the appropriate reaction was to his stuttering moments. I wasn’t sure if it was appropriate to ask him about it. I think what you’ve written about being open and honest communicators is so important in all aspects of our lives, but particularly during moments where we might be unsure or uninformed. I agree that the world would be a better and kinder place if we were all more patient communicators! Your willingness to educate those you communicate with is beautiful!

    Best,
    Kysa

    • Thank you, Kysa! I think what you said of the importance of being willing to be open and hones communicators in all aspects of our lives is very true, and is a good lesson to remember!

  11. Thank you for sharing your knowledge and experience! I am a graduate student taking a fluency course and I agree that the general population needs more education on stuttering and how to respond to PWS. What better way for them to learn about stuttering than from a PWS, they are the best resource to learn from. I also agree that PWS need to advocate for the world to better understand stuttering. It is more meaningful and memorable if these teachable moments come from a PWS.

    • Thank you, Breanna! Good luck in your graduate studies, and I hope you will keep having teachable moments in your clinical hours in school and during your career!

  12. Hi Lisa,
    Thank you for sharing your experience! I was very surprised that the woman was bold enough to suggest this to you without having any evidence to back it up. I’m sure she had good intentions, but it did not come off as helpful at all. If she has worked in the special education department, you would think she would understand the importance of research and evidence-based practice. I think you handled the situation nicely.

    I agree with your overall message of “It takes one person at a time to change the world.” This holds true to any situation. As a whole, we need to bring more awareness about stuttering to the community. Education is key!

    Thank you again!
    Kassie

  13. This was a very educational paper! I loved how the paper emphasized the importance of educating people who do not stutter on the topic of stuttering. With the prevalence of stuttering being so low, many people are unaware of what stuttering entails. This may result in people who do not stutter attempting to provide information to those who do stutter; this guidance may be unhelpful. Advice being offered to a person who stutters may embarrass the person receiving the assistance. Your personal experience of being offered advice by a person who does not stutter shocked me! What advice would you offer clinicians in assisting clients who are frequently given unsolicited and inappropriate advice from people who do not stutter? Thank you for writing such an insightful paper pertaining to stuttering!

    • Thank you for your feedback! My advice for clinicians is for them to encourage their clients to seek a local support group so they can talk to other PWS in a supportive environment. I believe that SLPs can become allies to PWS through educating themselves about stuttering and sharing with the client on how to access the information. SLPS can be willing to answer questions about the disorder from the client’s members and/or direct them to informative websites and other resources to learn more about stuttering. The SLP can encourage the client to attend conferences related to stuttering to meet potentially several hundred more PWS, including children, teenagers, and adults (if he or she has the means to do so). In sum, the client who stutters needs to feel empowered to speak about his/her stuttering and inform people who do not stutter that stuttering is much more complex than the simplistic advice they may be giving and that it is actually unhelpful. As I discussed in my paper, I do believe the process of being empowered to speak up begins with peer support. Peer support is essential for people of all ages, and can develop the attitude that he or she deserves to be heard and does not need to be silent or avoid certain words just to prevent stuttering.

  14. Hello Elizabeth,

    Thank you for your contribution to ISAD this year. I greatly enjoy reading about the personal experiences of PWS as it provides insight into the situations encountered by PWS. I agree with many of the points you made regarding self-advocacy and peer support. There is a lot of misinformation that still circulates within the general public but self-advocacy and education can be a good way to bring awareness to the complexity of stuttering.
    Thanks again!

  15. Lisa,

    What an enlightening read! We have talked in our graduate courses quite a bit about the importance of self-perception in an individual who stutters. I agree that peer groups can be an important tool in fostering more healthy attitudes regarding their fluency, thus building up the confidence to self-advocate…not to mention the value of different perceptions of stuttering directly from other PWS. Thank you so much for sharing your experiences!

    Best,
    Becca

    • Thank you for those kind words, Becca! I also wish you much success in your studies and in your career! Yes, I have found it valuable to listen and learn from different people’s experiences and perspectives. I think that you can also find that true whenever you come in contact with PWS as a student or a SLP, and a good place to learn is to attend a support group.

  16. Hi Lisa,

    I really enjoyed reading this article. I appreciate that it was both insightful and informational. I’m a second year SLP graduate student and I’m currently taking a fluency disorders course. I agree with you that PWS can educate the public through self-advocacy, while also building their own self-confidence and self-acceptance. As an SLP, I think it could be particularly helpful to work with school-age children to teach them self-advocacy, since CWS may be particularly vulnerable to bullying and sometimes social isolation that they can carry into adulthood. Do you have any tips for teaching children who stutter to advocate for themselves? Is there anything specific you wish you were taught (about self-advocacy or even feelings/attitudes about stuttering) as a child who stuttered, either by an SLP or an education professional?

    Thank you,
    Alyssa

    • Thank you for your feedback and question, Alyssa! Unfortunately I don’t have personal experience with self-advocacy as a child, but I think it’s admirable if that’s one of your interests. I was very quiet and did not speak much as a child. I was not diagnosed with stuttering until I was a teenager. I do believe that it is important for school-age children to learn that there is diversity among people, and that the school can foster an environment to educate using age-appropriate terms about these differences. School staff can teach children to strive to be kind to each other and have an environment where there is zero tolerance for bullying. Children can be taught that if they become a victim of bullying that they need to speak to a trusted adult. As for what I wish I was taught when I was younger, it would be that stuttering is okay- it is not “bad” even if I am very dysfluent. I wish that I could have been taught to speak more openly and participate in class, and that I do not need to feel shame/ embarrassment about stuttering. I wish I could have learned that ultimately what was important was that I challenged myself and kept talking, instead of feeling that I should be quiet unless I was sure I could speak without stuttering. I needed a lot of work on my self-perception as a teenager, and I’m still working on it!

  17. Thank you for your article Lisa,
    I think it is amazing that you are able to find such a great support group called Speech Buddies. That is a great way to discuss hardships and positive experiences that other PWS probably encounter. I really like the idea of doing challenging speaking situations to other PWS. I can imagine this is more comforting to speak in front of a PWS before embarking on a difficult speaking situation. I feel like your experience with the attendee and volunteer coordinator is a perfect example of how PWS can educate others on appropriate reactions and to explain what stuttering really is. It is amazing that you have chosen to speak up and inform others about stuttering!
    Thank you,
    Kayla

    • I appreciate your feedback, Kayla! Speaking up is still (and I’m certain always will be) difficult, but I can see its value. I do appreciate the value of a group like Speech Buddies to offer empowerment to speak up and educate.

  18. Hi Lisa,

    I am a first year SLP graduate student and I am currently taking a fluency disorders class. This article was very informative and related a lot to the subjects we are discussing in our class. We have spent a good amount of time talking about how important it is as an SLP to help our clients build up their self esteem and recognize that they are so much more than their stutter, and they should not feel as if they are characterized by that. I think it is so important to educate the public through self advocacy, but I also think that SLP’s and other professionals should also make it their mission to educate the public. I also really enjoyed learning about the Speech Buddies group. I think this would be something that is really helpful to many different chapters in the National Stuttering Association. One thing we have learned in our Fluency class is how important families/significant others are and how they play an important role in treatment/intervention. Do the families of a PWS join in these Speech Buddies meetings? Or do significant others participate in the meetings?

    Thank you!
    Bailey

    • Thank you, Bailey! I am happy to hear that you enjoyed reading about the Speech Buddies group. No, currently neither families nor significant others participate in these meetings-it only has been peer support for PWS outside of the chapter meetings. We do have the significant others of PWS attend National Stuttering Association Chapter meetings. Thank you for your comments about what you are learning about fluency disorders, and all the best in your studies! I agree that we do need SLPs and other professionals as allies for PWS to educate the public! I believe that the concept of Speech Buddies may be helpful for any NSA chapter, and would like to see the concept spread.

  19. Thank you for sharing your experiences! I agree that self-advocacy which includes peer groups can be immensely supportive in changing people’s viewpoints when it comes to disfluencies. Your experience with the special education teacher shows just how uneducated individuals can be when it comes to stuttering.

    • Thank you very much for your feedback! I am happy that my paper is enlightening about the importance of self-advocacy. All the best to you in your endeavors to learn more about PWS and the complicated nature of dysfluency.

  20. Thank you for sharing your experiences as a person who stutters. I could feel the passion in your words when you discussed self-advocacy and self-acceptance. I feel these are very important qualities to have. I believe change can definitely start with one person, and sometimes the smallest changes can have the biggest effect on our society. This type of change can be what you mentioned about educating people who do not stutter about the topic of stuttering. As a person who does not stutter, I have realized the importance of being patient with someone who stutters because we all have something to say. I hope this attribute will help me make a difference in society.

    • I thank you, Addie, for your feedback! I strongly agree that every person does have something to say. I think that the quality of patience will be a valuable asset for you.

  21. Lisa,
    Thank you for taking the time to share your story! I think that too often, people in society think that if you “just slow down,” the stuttering will stop. I wish that everyone who has that mindset could read your paper so they could understand that stuttering is much more complex than simply “slowing down.”

    Thank you,
    Katie

    • Thank you, Katie! Yes, I agree that many people do believe that “slowing down” will solve the problem and that is often not the case. People who do not stutter may stumble over words because they are trying to talk too fast or feel anxious, so I understand that is where their advice is coming from.

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