 About the Author: Michael Sugarman, MSW. Attended peer support groups for people with disabilities at the Center for Independent Living, Berkeley California, in the late 1970’s and saw the stuttering community movement and disability rights movement together to argue for human rights (Americans with Disabilities Act) and remove stigma of being “stupid, nervous”, or seen as “less than whole.” |
“The difference between the right word and the almost right word is the difference between lightning and a lightning bug” Mark Twain (1)
In 1978 a few members of the National Stuttering Association (NSA) attended a panel discussion by Gene Cooper, Hugo Gregory, Joseph Sheehan and William Perkins at the American Speech and Hearing Association (ASHA) Conference, San Francisco, California who asked speakers to reframe from using “Stutterer” and use “Person who Stutters.”
Michael Hartford from National Council for Adult Stutterers and I presented Advocacy Movement in USA and the Failure of the Profession (ASHA) Conference 1978. Approximately 150 -175 folks attended.
The term “people first language” first appears in 1988 as recommended by advocacy groups in the USA (2). The usage has been widely adopted by speech language pathologists and researchers with ‘person who stutters’ (PWS) replacing stutterer.
In our society, speech is considered one of the most important means of interpersonal communication. While other means such as written language, may be superior at times in conveying the content of messages, spoken language not only contains the content, but includes information about the speaker’s intent, emotions, personality and perceptions. That is why people spend millions of dollars developing tools that allow for automatic voice recognition systems and incorporation of voice and images in electronic communication (3).
Unfortunately the window speech provides on the speaker’s self also can lead to stereotypical perceptions of people with speech issues that go well beyond their speech difficulties.
While spoken word is taken for granted by most, the use of speech language is challenging for millions around the world who stutter. It is estimated that 1% or 70 million of the 7 billion people with whom we share this world, stutter. For many of us, daily communication is a constant struggle; our speech may not open doors, but closes them for interpersonal, academic and professional development and fulfilment.
Disrespectful language can make us feel excluded and a barrier to full participation. I am hoping we can address this by developing Mindful Stuttering Language to change our relationship with listeners and society to create a positive environment in which to develop their aspirations and advocate with teachers, colleagues, family members and partners how words and phrases they use make us feel (4).
First we may want to address: being different; recognition of our self-worth and dignity, and celebrate contributions, skills and strengths we exhibit. Our need to change and examine common stereotypes of our stuttering: incapable; not intelligent; unable to express feelings; and possibly considered as an inspiration.
Please add your thoughts and comments on what you believe would be Mindful Stuttering Language. Thank you.
- National Youth Leadership Network-Kids as Self Advocates @ 2006 NYLN and KASA
- People First Language Wikipedia
- Bill of Rights and Responsibilities for People who Stutter 2000
- National Youth Leadership Network-Kids as Self Advocates @ 2006NYLN and KASA
Hi Michael, I love the idea of creating a more mindful approach that would allow for celebration of differences. Mindfulness can be helpful in so many scenarios, and I’m surprised that this is the first that I’ve heard of it being associated with Stuttering Language. Thank you for sharing!
Thank you for your share,too. The paper is similar to hosting a party. You send out invites and hope at least 1 person attends–Language is very important 🙂
Hi Michael. Thank you for creating this conversation about Language. A couple years ago we did a workshop at the NSA conference on How the Language We Use Affects the Way We Think About Stuttering. When working on this workshop, I remembered Bob Dylan who said: Gonna change my way of thinking–Make myself a different set of rules.
That is in fact what we need to do: change our way if thinking and thereby change the rules. For example: Non-judgment is a key concept in Mindfulness. Many PWS, and people in general, report on their negative judgments of themselves. For us PWS, it is especially important to practice non-judgement about the way way we speak. We should stop saying things like “I had a bad stuttering day”. The struggle is real, but the stuttering, as Sheehan (I think) said, is neither good nor bad. It simply Is. When we stop judging ourselves and our stuttering we pave the way to living our lives. So, I would offer that “non-judgmental observation” is key to Mindful Stuttering Language.
Thanks a lot, Michael.
Thank you for your comments. I will use non judgement in next draft–
Stanford university psychology researchers used cognitive behavior therapy reevaluation—And the therapy addresses negative thoughts by writing them down and tearing up the piece paper and replacing that thought with a positive. Stanford researchers found after weekly therapy for (I think it was for 16 weeks) not only clients learned to create a positive —participants brain chemistry changed too.
Researchers in the field of neuropsychology and psychology are finding more ways to address negative internalized judgements–look forward to talking further Michael
Hi Michael, I agree that using mindful language when talking about and thinking about stuttering is a powerful tool to shift the perceptions of people who stutter and their listeners. As an SLP graduate student, I haven’t encountered many clients who stutter yet on my caseload. How would you suggest implementing the idea of “mindful stuttering language” into therapy?
Thank you for your question—first using person first language and second ask empowering questions and third this is when you feel comfortable with the client: explore being different and what that means to him or her.
Hope that helps—further in therapy you can ask list words that were disrespectful to you.
Kindly and good luck in becoming a alp 🙂
Michael
Thank you for sharing Michael. As a future SLP I am going to take this information and help spread the word on Mindful Stuttering Language. It is important to spread the word and allow everyone to feel more comfortable around other people. Living in a positive environment allows people to be more successful. As a future SLP I want to be an advocate for what is right and I want to make sure I can be someone to help start this positive environment for people to live in.
Yes. I agree to create a positive environment with you to make this happen.
good luck in becoming a SLP 🙂
Michael
Hi Michael,
Thank you so much for sharing your thoughts on this. I am a graduate SLP student. This experience of going into the healthcare profession has taught me a lot about person first language. I think it is liberating for people to be seen as individuals and not defined by a disorder. I think there is a huge educational component to this as well – we need to educate people we interact with about stuttering and person first language.
I agree. Let’s work to together in creating this world–always Michael
And good luck in becoming a SLP
Hello Michael,
Thank you for a wonderful article! I appreciate that you are attempting to bring mindfulness into the realm of fluency and stuttering therapy. I really like how you wrote that part of a Mindfulness approach can be inculcating into our clients that being different is not a crime or a problem– being different is beautiful and an essential part of what makes us human.
Thank you==take every opportunity as a teachable moment and just maybe we can create a world that being different is OK
always Michael
Hi Michael,
Thank you so much for sharing your thoughts about mindful language use. I definitely agree that the use of mindful language is very important when working with clients. It shows others that they are respected and that it is okay to be different. I think it is imperative that we change the stereotypes of stuttering. I believe that more classrooms should inform children and teenagers about stuttering early on to reduce these negative perceptions society has. No one should be made to feel bad about their differences. We are all different in our own ways.
Hey Michael,
Great insights!! Thanks for sharing your thoughts and feelings on the topic! Mindful language was something I haven’t given much thought to however, it is something our society needs to implement. I am a graduate student studying speech-language pathology and currently am working with a student who stutters. I want to incorporate being different, recognizing self-worth and dignity, as well as celebrating his contributions!
Everyone on this planet has different trials and obstacles to pass through, if everyone remembered that difficulty of our trials does not correlate to our self-worth or ability to contribute to society, I feel the world would be a better place. It may always be a struggle in the society in which we live, but you are an inspiration. Thanks for taking the time to be an advocate and educate others. An accumulation of small but powerful acts will make a big difference in the end.
Thanks,
Brooke
Together we can create this world that it is ok to be different. Good luck in becoming a SLP.
warmly Michael
Hello! The title of your submission grabbed my attention: “Exploring Mindfulness Stuttering Language”. The word “mindful” is a buzzword for meditation, which implies a process of quietly observing something without judgement (as noted above by Hanan Hurwitz). In meditation, a person will feel the emotions that are triggered by an experience or thought, let them pass over or observe them, then afterwards, make an “informed” response, a careful presentation, either written, spoken or gestural, or perhaps no response at all. The point is, you have control because the longer you wait to digest and respond to what has been said to you, you have more choices. You are no longer just reacting to a stimulus. Is this in line with what you are exploring?
I am mental health professional and in my groups and one on one I use mindfulness in terms of all spheres of live: Address while eating such as a orange –peeling the orange and use your sense of smell–eating the orange and the taste—walking—attempting to be present —identify triggers and teaching breathing exercises—I work with folks who have Medi-cal and ask them to use breathe2relax free app.
Thank you for your insight
warmly Michael
Hello Michael, thank you for sharing your thoughts on mindful language with stuttering. I am a SLP graduate student and I love the push for more ‘person first’ language in our profession. It is pretty astounding that such a small language change can make such a magnificent difference in how a person feels about themselves and about others feel about them. Anything we can do to assist a population that may already feel estranged, to feel less so, is worth doing.
Thank you for your thoughts and advocacy on behalf of PWS.
Carley
Thank you. You can imagine what the first reaction was in 1978 to person first language. It took a while–Thank you for your participation in this change–
kindly Michael
Hello Michael,
I very much enjoyed reading your article on mindful language and stuttering. I am a first year SLP graduate student at western carolina university and am in a Fluency disorders class this semester. For the first part of our semester we focused on person-first language and why it is important in our profession to use such language. I do believe the first step to using person first language is mindfulness. In fact, isn’t it such that when we use person first language that we recognize the person as a whole rather than the difference of the person. My question to you is: would you correct a PWS on person first language as well, or accept this type of language as how they have decided to speak about themselves or others? Or should we hold PWS to an even higher standard of mindfulness, especially in the case of stuttering?
Looking forward to your feedback,
Taylor
Michael,
First off I would like to thank you for posting this paper and everyone else who has contributed to this conference. I look forward to learning more about your work, and I hope to continue all of your legacy in promoting positive representation and self-image for people who stutter, and all people with disabilities. I am a graduate student at the University of Redlands studying to become a Speech-Language Pathologist (SLP), with a bachelor’s degree in Liberal Arts. Since the assessment and treatment of stuttering has a long history in our field, it is crucial that SLPs remain sensitive to the ways in which people who stutter prefer to self-identify. Since I am also fascinated by the way that language constructs our social discourse, and the ways that we use language to express ourselves, I do caution against the erasure of identity-first language for the sole use of person-first language. I like to think that the agency to decide how people self-identify should ideally belong to the people themselves, and that professionals should have a supporting role in that process. To me, this process of returning agency to the people in question is part of a general paradigm shift from pathology to neurodiversity.
For many years now the American Speech and Hearing Association has promoted the use of person-first language to engender the philosophy in SLPs not to refer to someone in a way that labels someone with a word that they prefer not to self-identify with, such as a medical diagnosis. One term which is certainly slated to fall out of use for example is “aphasic” to refer to survivors of stroke who live with aphasia, as I have never heard “aphasic” used in a non-derogatory context. As you have stated, and is echoed by many comments above, person-first language is an excellent tool to help professionals think critically about dehumanizing effects of pathological conditions, and to empower people to think of themselves in healthy and liberating ways.
There is however a sentiment held by many that person-first language can have a negative connotation. Identities commonly referred to with person-first language are often pathologized identities, but are not organically painful or life threatening. To some the use of person-first language pathologizes their identity in an uncomfortable or inappropriate way. Like many others diagnosed with ADHD, I do not feel the diagnosis is a deficit and prefer to self-identify as attention-divergent. While there it is true that there are social and even emotional challenges involved with my divergent attention span, I experience these challenges mostly in instances when society is inflexible and un-accommodating. I believe that both identity-first and person-first language have equal power to return agency and dignity to historically and systematically marginalized peoples.
There’s a rigorous and dramatic episode of the podcast Suttertalk (Ep. 483) which I have listened to many times in which Joshua St. Pierre, a PhD in Philosophy and person who stutters, speaks on the cultural construct of ableism and how it shapes discourse. Later in the podcast guest Zach Richter, a Masters student of Disability studies, shares his experience as a self-identified “autistic person as well as a stutterer”. Richter and St. Pierre first and foremost stress that people who stutter should absolutely, without judgement, receive speech therapy if they would like. They do advocate however for a shift from the perception of stuttering as an illness to be cured, to a natural human variation and cultural identity. This is to say that although stuttering is extensively discussed in the paradigm of pathology, there is less emphasis among SLPs about the lifelong impacts of stuttering on communication and emotion. Richter implores his listeners not to hear stuttering as an interruption, but as a different form of language filled with character and emotion. “What does the speaker communicate with their stutter?” Richter poses to the listeners, as he advocates for the acceptance and patience of able bodied listeners.
From this perspective, St. Pierre and Richter raise poignant questions about self-determination and informed consent which have serious ethical and legal implications to practicing SLPs. I like to think that when I begin my career in a few months from now, I will approach people who stutter first and foremost as an advocate for pride and agency in stuttering. This means to emphasize that there is nothing wrong with a person for stuttering, and that it is a variation that can does not have to be changed for any reason other than personal motivation, or to ameliorate anxiety caused by an impatient, or otherwise un-accommodating society. This promotion of a positive agency within the stuttering community addresses what Richter refers to as an epistemic injustice. Epistemic injustice is the dominance of a specific discourse which makes it difficult for a person within that discourse to think creatively, for example for a person who stutters may find it difficult to understand that stuttering is not a defect or illness if they are only told negative things about stuttering. It is firmly within the advocacy work of an SLP to inform the world that it is okay to stutter, to adopt it as an identity, and/or to learn how to control it though treatment and education.
I feel that the most eloquent defense of person-first language is articulated by Judy Endow, a practicing social worker who self-identifies as both autistic, and as a person with autism. Endow has claimed:
“The way many people with an autism spectrum diagnosis wish to be recognized is with the word autistic. For us, autism is not simply an add on to our personhood, but is in fact, foundational to our identity. Just as we would not refer to an African-American as a person with Blackness, to a person of the Jewish faith as a person with Jewishness or a boy as a person with maleness, many of us do not want to be referred to as a person with autism. For us the neurology of autism is part of our identity in the same way race, religion or gender is part of a person’s identity. Just as we refer to people as Black, Jewish or male many autistics want to be referred to as just that – autistic. It is who we are in this world. Even so, not ALL people with an autism spectrum diagnosis want to be referred to as autistic. My friend Jacob, for example, explains that autism visits his body in such a way that when people see him coming they SEE the autism. Jacob feels very strongly that when others use person first language they are more likely to see him – Jacob, a fellow human being – rather than the hard of his autism in his body.”
Endow goes on to propose to respect all people by referring to them in the way that they wish. In commenting more directly on the legacy Kathie Snow and the purpose of person-first language, Endow also claims:
“I now see that when Kathie Snow invited us to use person first language she was actually inviting us to come into a person first attitude. And it is this person first attitude that unites the word usages of person with autism and autistic. We all want to be included in the human race. Today when I do public speaking on autism related topics I use both person with autism and autistic, honoring all my friends preferred language while realizing that a person first attitude is the important construct. Thus, I invite you, as the reader, to use whatever language supports you in a person first attitude toward fellow human beings who happen to have an autism spectrum diagnosis.”
In conclusion, I believe that a movement toward more accepting language is part of an overall paradigm shift from pathology to neurodiversity. From this perspective, the use of person- or identity-first language is an individual choice framed within a society that must learn to be flexible with our language and think about how it affects each other. Thank you again for creating this space for us to express our ideas and I encourage anyone to contact me with questions or comments!
-Montgomery Aguilar
University of Redlands
montgomery_aguilar@redlands.edu
Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.
Stuttertalk Episode 483: Stuttering, Activism, Disability, Ableism and Informed Consent (Ep. 483)
http://stevesilberman.com/book/neurotribes/
Thanks for your article, Michael. The fact that stuttering still is not being seen as a problem, that the media still mocks PWS, that teachers don’t learn about stuttering, and that, when together with other disability groups, stuttering is still being see as the ugly duckling who has no right to be there, there’s still so much to do!
No, we don’t need pity. No we don’t need to “snap out of it and go to therapy”. But yes, we need help. We need attention. We need different kinds of therapy, as no therapy fits all. We need research. We need people to understand, as our stutter is depending on the re/action of the listener.
We need mindful language. We need a voice. We need to keep talking.
Anita S. Blom, Sweden