|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.
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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