The Disability Question

mertzAbout the author:  Pamela Mertz is a person who stutters who is very active in the stuttering community. She is a Stutter Social host, writes the blog “Make Room For the Stuttering” and hosts the podcast “Women Who Stutter: Our Stories”. She has presented workshops on stuttering both regionally and nationally, and has spoken at two international stuttering events. Pam is also a 9 year Toastmaster and has achieved Distinguished Toastmaster (DTM) status. Pam works full time in a high school in the Albany, NY area as a recruiter and outreach specialist, spending most of her time doing public speaking presentations.

I recently had the opportunity to deliver a presentation about stuttering to high school seniors enrolled in a scientific research class. All of the students were focused and interested in the biological sciences. At the beginning of my talk, I was very open, advertised my stuttering and spoke about how I had hidden my stuttering for years. I mentioned that I was going to enjoy this talk because I was going to be able to stutter freely without the anxiety I sometimes feel when speaking publicly.

I shared that I wasn’t going to use any techniques to control or modify my stuttering and that they would hear plenty of stuttering. I didn’t do any voluntary stuttering. I just spoke naturally and freely, and stuttered well.

Part of my talk focused on my personal journey with stuttering. I explained about covert stuttering, the iceberg analogy of stuttering (the feelings that are not often acknowledged) and my transition from being a covert stutterer to an overt stutterer. I also spent time discussing some of the current research about stuttering, namely the genetic and neurological influences. I correctly guessed that the students would be particularly interested in the science behind stuttering. The students asked smart and thoughtful questions throughout my talk. Several admitted that they thought stuttering was a result of anxiety and stress. They didn’t realize stuttering is thought to be a neurological disorder and that there is also evidence that it is genetic. Some also acknowledged that they had thought that stuttering was somehow tied to levels of intelligence.

I also talked about the different therapeutic approaches available to help people manage stuttering and explained some of the main differences between approaches such as fluency shaping, stuttering modification, and avoidance reduction. We had a brief discussion about there not being a cure yet for stuttering and the critical need for continued research. We talked about what’s needed for scientific research and the reasons why there is not enough research about stuttering.

After the presentation, many of the students emailed me feedback and thanks for coming to visit their class. Three of the comments I received from students were interesting regarding their take-away that stuttering is a disability.

“I appreciated you coming to speak with us about your stuttering. You showed a lot of confidence when giving your presentation and did a very good job explaining the struggle you went through as a child. It was nice to hear about all of the programs that are available now, to help people with stuttering issues to get to know people that have the same disability. I was unaware that such programs existed.”

“I’d like to thank you for coming and speaking to our class. I understand how it must have felt for you to do that, but I want you to know that we all benefited from your talk. By you putting yourself in that situation for us, we all have a better understanding of both sides of your iceberg. I hope you continue to do talks like the one you gave us, as to help remove some of the stigma that surrounds your disability.”

“It was really brave of you to come and talk to us about your disability. We learn so much when we hear about other people’s differences and challenges. Talking honestly to us about stuttering was very eye opening. Thank you for letting us ask so many questions.”

I found the students’ use of the word disability interesting as I had never once mentioned that during my presentation. I did not indicate one way or another my own thoughts on whether stuttering is a disability. I wondered what about my speech led them to conclude that my stuttering must be a disability.

The Americans with Disabilities Act (ADA) of 2010 defines disability as a significant impairment of a major life activity. Communication is a major life activity, and therefore stuttering is a disability that is protected under the ADA. That means that discrimination based on stuttering is illegal and that schools and workplaces must make reasonable accommodations for people who stutter.

At one point in my life, I considered my stuttering to be disabling. When I was so covert I was afraid to speak, and chose silence rather than speaking, my stuttering disabled me. I was not participating in the major life activity of communication. I purposely avoided speaking situations, and when I could not, I said as little as possible in order to minimize the possibility of stuttering. Fear of being exposed as someone who stutters often paralyzed me, because I feared the negative social consequences of stuttering. I had been mocked, teased and excluded enough to conclude that hiding stuttering was preferable to speaking. These negative social consequences occurred in all phases of my life, as a child, teen and adult.

I was fired from a job due to my stuttering, so I have firsthand experience of how disability is perceived and accommodated (or in my case, not accommodated) in the workplace. I often talk about that experience of getting fired when I do talks about stuttering and people are always shocked that it happened and interested in how it was resolved and how I moved on. I filed a complaint with my state’s Human Rights Commission and also found an attorney willing to take my case and filed a lawsuit for wrongful termination. The case was settled after almost two years of mediation and my former employer paid me a small amount of money for the pain and suffering I endured during that traumatic time. I considered it a victory, as the employer had to admit some wrongdoing and I was able to move forward. The incident helped me to recognize that hiding my stuttering was no longer an option for me and I began the journey from hiding stuttering at all costs to finally being open and true to myself.

These days, I stutter openly and say what I want to say and communicate effectively. I let people know that I stutter when giving presentations or talking to groups. This lets them know to expect stuttered speech and also lessens any anxiety I may have, which basically gives me permission to stutter openly. Stuttering openly, educating others and advocating for myself is one of the most liberating things I have done in my life.

I’m often asked whether I think stuttering is a disability and I’m usually very careful with my answer. I believe the question of whether one’s stuttering is a disability is a very personal one. Because I can communicate well with stuttering, I don’t really think my stuttering disables me anymore. But, I do seek accommodation in the workplace for stuttering. I work in a school and very often I need to make announcements on the public address system for students or visitors to report to a designated area. I absolutely hate using the PA system. I don’t want my stuttered speech heard over the microphone throughout the whole building. So, I’ve asked for other people to make any needed announcements and in turn I help out with other tasks when I can.

I’ve also been asked whether I “tick” the disability box on applications or questionnaires. I do, because I might need an accommodation of some sort. I’m not embarrassed to qualify my stuttering as a disability, like I once would have been.

Everyone has something. My something happens to be stuttering. When I hear stuttering discussed as a disability in the stuttering community, I hear mixed responses. Many people who stutter don’t think of it as a disability. Just as many believe, very clearly, that stuttering is a disability. It may just be a personal choice as to how you answer the disability question. Or how you respond when society refers to you as having a disability. One component of the definition of disability under the ADA is that you only have to be regarded as having a disability.

I had a boss a few years ago that appeared very accepting of my stuttering. I had been open during the interview process and didn’t hold back when stuttering at work. When it came time to do my annual performance review, he commented “wasn’t I glad that he didn’t mention my disability in the written evaluation?” He talked about how I excelled at communication despite my disability. I remember thinking that his comments almost made it seem like he was proud to have someone with a disability in his department. Maybe he was. Maybe I fulfilled a quota for him. Who knows? But at the time, I also remember thinking that I didn’t consider myself to be disabled. I was just an employee who happens to stutter. But he regarded me as having a disability. So, did that mean I do?

Next year, when I speak to another class of young scientific research students about stuttering, I will probably bring up the disability question and ask them what they think. I have already been asked to speak to next year’s class. I will also let them know that when I traveled by train to the National Stuttering Association conference in July, I had selected the “disability box” in the purchase section of the ticketing process. It enabled me to receive a 15% discount on my train fare. That is one of the rare benefits to be had by something as complex and mysterious as stuttering. Often, people who stutter are laughed at, mocked, excluded or dismissed because of how we talk. I found it delightful to be able to reverse fields and receive a rare benefit due to my stuttering.

What do you think? Is stuttering a disability? Should it be up to the person who stutters to decide if it’s a disability or to society in general to regard it as such?

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Comments

The Disability Question — 79 Comments

  1. That’s a really Great article, Pam. I liked it so Much, and as usual, You are a brave and an inspirational Person. Love and respect to You, Pam!

    • Hi Mery – thanks for reading and taking the time to comment. But, you didn’t answer the question! 🙂
      Do you think stuttering is a disability?

  2. You have done a beautiful job in this paper of exploring the “disability” label when it comes to stuttering. You have clearly figured out where that term belongs in your life and comfortably use it as a resource. At the same time, you do not let your stutter define or limit what you do in life. Perfect! Thanks Pam…you are always inspiring…

    • Thanks Dori! I always appreciate your feedback and support. Yes, I guess I have figured out how the term disability works in my life and I don’t let stuttering stop me, like I did for years and years before.

  3. In terms of whether or not stuttering is a disability, I would say that legally it is considered a disability, as it is covered under ADA. Whether or not an individual feels that their stuttering is disabling and chooses to receive accommodations should be up to that individual.

    You touched on a point that you do receive accommodations at work because your job requires that you speak on a PA system. You also discussed that in the stuttering community, there are mixed opinions on whether stuttering is a disability. I am curious about the life/work experiences of others in the stuttering community and their opinions on stuttering. For example, I know of a PWS who works from home doing primarily computer based work. He does not consider his stuttering to be very disabling. I wonder if a PWS with a job that requires more face-to-face communication may feel the opposite? Do you have any information or insight on this? Thanks!

    • Good question! I’ve talked to lots of people who stutter who have shared that they chose careers that they believed required very little communication because of their stuttering. A good friend of mine chose to become a radiologist because he considered it to be a “back room” type of job. Little did he know that many years later he would be working in a teaching hospital and have to do rounds with med students. He is very self-conscious of his stuttering but I don’t think he thinks it disables him.

      I think people who stutter in more communication heavy jobs may be more prone to believe that stuttering is a disability. I also know people who stutter who don’t the label of disability, even if qualifying themselves as having a disability might afford them accommodations which might make the job easier.

      I think it should be up to the individual to determine if their stuttering is disabling, not letting society determine that for them.

      Thanks for reading and spurring further dialogue. – Pam

  4. Thanks, Pam, for a wonderful paper. I think that stuttering is certainly a disability, but the person who stutters may or may not be disabled. It is important for any of us PWS who do not feel disabled to empathize with and support those in our community who do feel disabled.

    I was fascinated by a discussion on the Social Model of Disability, which ” takes the view that disability is created by the physical, organisational and attitudinal structure of society”. But until society in general can change, using accommodations, and getting discounts where possible, seems pretty fair.

    Thank you.
    Hanan

    • Thanks Hanan for reading and sharing your feedback. In earlier years, I would never have sought an accommodation for stuttering, because that meant I had to acknowledge stuttering. I’ve come a long way, as have you, my friend.

  5. “Disability” has a negative connotation when most people encounter or say it. However, it is the usage of this word that allows people benefits, because having one is regarded as a negative, limiting thing. The definition provided by the ADA is broad, and people probably fluctuate in terms of their identity as having a “disability” or being “impaired” by a condition.

    I find it interesting that you never once spoke of stuttering as a disability nor introduced yourself as having a disability, yet the kids felt open to identify it as such. They are kids, but as you experienced with a former boss, it extends to all ages. What do you think could be done in terms of educating people about how to view stuttering, or other “conditions” labeled as “disabilities?” Is there an etiquette training you would like to see?

    Thank you for your openness and insight!

    • Hi Julia – interesting question, is there an etiquette training I’d like to see. I guess I do that myself for people when I give talks about stuttering. I always talk about being patient and respectful as a listener, the importance of maintaining eye contact and not finishing words or sentences for those of us that stutter. I also add that it is perfectly ok to ask us questions, as most people who stutter actually love to talk about stuttering but want to make sure the listener is genuinely interested.

      I think also that the concept of disability should be discussed, as I note, not all people who stutter think of themselves as disabled. I think it’s a good idea to be honest and candid about how to regard us. It’s funny, I don’t consider myself disabled, yet I have an unofficial accommodation at work, having others use the PA system instead of me.

      I agree with you, the word disability has a negative connotation when people say it or encounter it. I don’t want to be regarded negatively, I want to just be regarded as a normal person who happens to speak with a unique voice. Thanks so much for writing and sharing. -Pam

  6. I am always inspired by your story, Pam. As to whether stuttering is a disability or not, I believe that something should be done in classrooms across the USA so that we (stutterers) are not GRADED by our performance in school. It’s not right. It’s like grading a crippled child on his ability to run. Anyway, you the expert in this area and I always love your articles, this one in particular. Thank you.

    • Hey Ruth, thanks for reading and the great observation about kids being judged in schools. I agree, more needs to be done to educate schools and teachers about what stuttering really is so that kids are assessed fairly based on their academic performance not on how they speak. So much more education and advocacy is needed. And I believe it is our job as PWS to do that educating. -Pam

  7. Oh Pam! I tried to stay out of this one but I just couldn’t!!

    I strongly identify as a person with a Disability (I stutter, have learning disabilities, and am fourth generation Disabled (that’s right–Capital D) on my dad’s side). That is my community who I share experiences in common with. Disability is more than a lable or a protected class, it is a culture. There is innovation, friendship, values and customs within that culture that those of us with nonapparent disabilities share with people with more apparent disabilities. We are stronger in numbers and we still face social and internalized stigma which our brothers and sisters in the Disabled community. Yes, there are degrees of disability, but my friends with more apparent physical disabilities had a much easier time doing their academics and met less discrimination than I did. Luckily the rights that this commiunity fought for benefited me and continue to. I want to pay them back, plus they are, for the most part, pretty cool people.

    • Hi Nina – I am so glad you didn’t stay out of the discussion. Thank you for sharing how strong the disability community is. I knew that, but I guess didn’t realize the real strength of the culture, with, as you say, it’s values and customs. I am very proud to be part of the stuttering community, which has it’s deep friendships and immediate bonding. But like I said in my paper, I don’t always feel disabled by my stuttering, so am kind of “iffy” about whether to identify as disabled.
      It’s interesting to me that society can label us as disabled even when we don’t think that ourselves.
      Thanks for the great insights. Always good to hear from you. – Pam

  8. Great article Pam and as you know I am very passionate around this area also. It is interesting the dirty “D” word. We know that stuttering is clearly defined as a disability the world over. Clearly defined. Yet why do so many PWS reject it? I can understand from a personal level of course, but not at a blanket level. No one has ever given me a clear case for stuttering to not be classified as a disability. Usually there responses are wrapped in ignorance around the meaning of disability and also quite offensive at times in terms of labelling better promoted disabilities. Yet many chose to “other” themselves into a limbo-like social state. “I am not disabled, yet stuttering restricts my life and steers my life choices in an unsatisfactory manner”. Hmmm…and yet you are not disabled? So your life choices are restricted, there is a malfunction in your vocal functioning (clunky definition, but hey..it is late at night) and your overall quality of life (and families, societies etc) suffers as a result. But stuttering is not a disability? Hmm yet you seek therapy or even a cure?

    • Hey Grant – thanks for reading and supplying your great insight. I felt it was a good topic to have a conversation about, since many have mixed feelings about whether stutterers are indeed considered disabled.

      I know you are very passionate about it. I am not sure why many people who stutter reject the notion of stuttering as a disability. Perhaps it just comes down to simply not wanting to be labeled.

      As I note in my paper, it was extremely interesting to me that I never used the “D” word in my talk with the students, yet they had no problem identifying my stuttering as a disability. I think your notion of a “limbo state” is a great way to define what many of us do. Thanks again. – Pam

      • Hey Pam, again great paper. The “limbo” state is dangerous for raising stuttering awareness if organisations do not support stuttering as being a disability. Hard to find funding, find other financial support or powerfully raise awareness without aligning with the powerful disability movement. The general public need to know the seriousness of the impacts that stuttering can cause for a PWS. But again….legally all over the modern world stuttering is usually clearly defined or the actions of stuttering are to being a disability. So no argument there except for the individual choosing to wear the label. I have read and been in some really terrible arguments from other PWS concerning why stuttering is not a disability for example in comparison to quadriplegia, Down Syndrome and many others more promoted disabilities. Usually these arguements are tied to a more general publics’ ignorant view of how disability is defined. May was well embrace the term as we are all going to be disabled in various phases of our lives from different conditions. The most common…..old age 🙂

        • Hey again Grant – I agree with you that we’re all going to be disabled in some manner at some point in life. Disability can affect anyone at anytime in their life, with old age arguably being the surest thing. It’s interesting that you noted “more well promoted” disabilities. Maybe indeed that is the key – that we don’t look at stuttering disability as a stigma, but rather as something that can help make life a little easier for us! You and I and Nina G should start a movement!

  9. I enjoyed reading about your experience. I think that there is a stigma about stuttering. I think that if a person who stutters allows the stuttering to be something that deters them from experiencing life like they want, then it is a disability for that person. But if the person doesn’t let the stuttering stop them from doing what they want then it is not a disability. I can relate to your experience because I have mild cerebral palsy. As a child I would say that it was a social disability for me in some ways because I wanted to hide it. But as I got older, I do not consider it a disability anymore because I do not let it stop me from living my life the way I want to.
    I am in grad school for Speech Language Pathology, as a future clinician I was wondering were you in speech therapy for your stuttering. If so, based on your experience do you have any advice on how to make speech therapy with a people who stutter meaningful for them? Was there anything you liked/did not like about speech therapy?

    • Hi Emily – thanks for the comments and good questions. I had speech therapy for my stuttering for about half a school year when I was in third grade, and then that was it until many years later, when I was an adult, in my early 40’s. I had a mixed experience in therapy – didn’t really feel therapy as an adult benefitted me as it was primarily fluency shaping and it just didn’t work for me. I wanted to work on acceptance and owning my stuttering, which I did find a couple of the student SLPs I worked with were able to help me with. I found it hard to adjust to having a new therapist every semester – it seemed like having to start over every few months. I only stuck with fluency shaping therapy for about 2 and 1/2 years. Your question about my likes and dislikes about therapy can best be answered by sharing with you the paper I wrote for the 2009 ISAD conference. It can be found here: http://www.mnsu.edu/comdis/isad12/papers/mertz122.html
      I’d be interested in knowing what you think. -Pam

      • Hi Pam, thank you for your paper. I’m currently in my final year training as an SLT in England, but previously worked in disability awareness training, so your paper was of great interest to me. I had usually thought in line with the social model of society imposing disability on an individual by concrete actions (like refusing equitable access), but I can see that how a person feels is also important. You prefer not to use the PA system, but even so do not feel particularly disabled because you have an arrangement with your colleagues so that you don’t have to use it. The point of ‘accommodations’ must be to make a person feel less disabled, but you have to feel disabled in some sense in the first place to get them… Maybe overall approach of society towards all kinds of individual people is the thing that needs more understanding and flexibility.
        Linking with the comment directly above, I am currently writing a research proposal for my dissertation on what PWS consider to be important outcomes from SLT. Your 2009 point on personally relevant goals may be the key I think! – Emma

        • Hi Emma – good to hear from you! I am glad you linked on to the link I provided to my 2009 paper about things I learned in therapy. I have no doubt all of the points are still relevant today, especially, as you note, personally relevant goals. If the goals are set by the therapist and not the client, outcomes are likely to be mismatched.
          I agree with you that the overall approach by society needs to continuously improve in order to take into account the many individual differences we all have. There needs to be more understanding and tolerance. Out of curiosity, how did you pick your topic for your dissertation? -Pam

    • This is my first post on this site in over 10 years so I apologize in advance if I’m not following proper etiquette. I wanted to jump in and sharing my therapy experience. I’m a pws and a slp. I’ve participated in many fluency shaping programs that never worked for me although I really loved spending time with my clinicians because they were genuinely nice people. I felt like they didn’t understand my stuttering and focused on the reward of fluency. They were so thrilled when I became increasingly fluent in the therapy room even though I could not always apply this fluent speech outside the therapy room. They believed that fluency would erase the fear and shame that I had developed over the years around speaking. Luckily, I made tremendous progress with my speech pattern as well as my attitude when I joined Vivian Sisskin’s avoidance reduction therapy group. I became increasing proud of myself for showing my real stuttering while stripping away the secondary behaviors during speaking situations that used to plague. These repeated participations allowed self confidence and subsequently lead to a comfortable forward moving pattern and increased fluency. The coaching from Vivian and the group support helped me to become a more confident speaker. Having shared all that, I realize that other types of therapies may be better suited for another pws. I think a successful clinician genuinely believes that the client can become a good communicator where’s/he can participate in many speaking situations. The client should be rewarded when s/he takes action outside the therapy room while taking small steps out of his/her comfort zone. Social interaction and turn taking should be fluid and not necessarily always fluent (although I think fluency is the byproduct when one is more comfortable). I believe that this continued progress will ultimately allow the client to achieve the freedom of saying whatever one wants at any time. That to me, is how we can obtain a satisfying quality of life. Vanna

      • Hi Vanna – thanks for taking the time to leave a comment about your valuable experiences as both a PWS and SLP. I’m not sure your comments are directly related to my paper, but I enjoyed reading your story and insights. Obtaining satisfying quality of life is indeed the goal, right?
        I didn’t know you had worked with Vivian Sisskin – what a wonderful experience that must have been. -Pam

  10. Hi Pamela! First, I want to thank you for your story and also thank you for giving me food for thought! I am not a person who stutters, but I am a graduate student in speech pathology. My undergraduate courses focused strongly in theory and basics of disorders and stuttering always seemed to be discussed as a disability. Now that I’m in graduate school, I find that my education has switched from theory and basics to the focus of the person we are helping and treating. I find it so fascinating that when you look at a disorder or disability on the surface you can label it as such but when you break it down into the different aspects and how it affects a person, you really can’t give it a definite label. The answer is in the eyes of the beholder. Everyone has different experiences in their lives and at different ages. A preschooler who stutters may not see it as a disability because their experiences never presented a frustration or struggle or they were never aware of their difference! Although, an adult who stutters could see it as a disability because of their past. I loved your mention of how this label can change! I 100% agree with you because in certain circumstances stuttering can affect the daily life more than other times. I find your article interesting for future SLPs and I think it should be a topic my cohort should look at thoroughly. Thank you again! Do you have any advice for future SLPs in this topic about stuttering? If so, I’d love to hear it!

    • Hi Christine – thanks for reading and taking the time to comment on my paper. I am glad to hear that your focus in grad school has switched fro theory to a more holistic approach. In my opinion, as a PWS, SLPs should “treat” the whole person, not just stuttering as a disorder separate from the person’s life. You make some good points, and seem very thoughtful in your approach to your future work. I hope you encourage your whole cohort to read my paper. I don’t think we talk about disability enough, especially as it relates to stuttering. – Pam

  11. I work at a California community college and this week I learned that speech based disabilities are being taken off of the designated disabilities list and put under “other” because there has been a decrease in students seeking services and accommodations. Last year only 50 students with speech based disabilities came to the disability office in all of California’s community colleges. This really concerns me because it suggests that students with speech based disabilities are not getting the protections under the law, accommodations and not being discriminated against. One hypothesis is that maybe things are better now and they don’t need to seek there protections and services. Knowing how people respond to me in my everyday life, I am doubtful that is the case! SLPs, it is important for people form their own identities around whether or not they have a disability but it is also important that they know the ADA and section 504 of the Rehabilitation Act has their backs when it comes to their educations. For me, I received accommodations like not being marked down on presentations because of my stuttering. The accessibility offices can help in the education of the school community and help to advocate is a teacher is discriminating.

    • Hey Nina – thanks for this great information and your insights. Stuttering is very personal and so is the choice to identify with a disability. It’s funny how that can change throughout life, though.
      Keep doing what you do – your a great educator and advocate. -Pam
      P.S. I miss you! 🙂

  12. Very interesting paper, Pamela. I think the question of whether or not stuttering is a disability is a very personal choice. As a person who does not stutter, I cannot completely understand the stigma associated with stuttering. But, I do think that stuttering can be a disability for a person if their life participation is impacted in a way that decreases their quality of life. I think that allowing stuttering to be a disability under ADA can be beneficial because it brings awareness to the disorder and provides individuals with the necessary accommodations, if they choose to seek them. In my opinion, stuttering is a very well- known disorder that no one really knows about. In that way, it is important for the person who stutters to decide if they think that their stutter is a disability, because each person is different and feelings change depending on where that person is in their life.

    I am a future speech language pathologist in my second year of graduate school and this topic is very interesting to me. We have been taught a lot about the stigma associated with stuttering, along with the feelings, thoughts, and negative connotations that society has regarding this communication disorder. In your years as a public speaker, have you found that many people think stuttering is a disability? If so, from your perspective, I’d love to hear your thoughts and comments.

    • Jessie – thanks for reading and for the thoughtful comments. You asked if in my years of public speaking, if people seem to consider stuttering as a disability. I have to say yes – it appears audiences I’ve talked to understand stuttering to be a disability, one which should be afforded accommodation(s) if needed. It seems my younger audiences tend to lean toward disability more quickly than peers. Maybe young people today are more used to hearing about disabilities whereas in my day (oh so long ago it seems) disabilities were taboo, rarely talked about, let alone acknowledged.
      It seems you have good insights and take a thoughtful approach to challenges. That should serve you well as a SLP. Best of luck to you. -Pam

  13. Pamela, thank you for sharing this incredible article! I have always wondered about how stuttering should be labeled. After reading this, I’ve decided it should be up to the individual. If they feel stuttering debilitates them they certainly should have the right to call it a disability. However, if the individual stutters openly and has no negative feelings/emotions associated with stuttering, then they should not have to label themselves as disabled. Again, thank you for sharing. I’ll keep this in mind with future clients!

    • Thanks for reading and sharing your thoughts. I truly hope my paper gets people thinking about disability differently.
      Pam

  14. Great paper, Pamela! I find your story very moving. I never really thought about how stuttering should be labeled. Your paper helped me see this all on a more personal level. I really liked how you wrote, “Everyone has something.” This gave me the opportunity to look at how I define things in my life and how others might define these things differently, and that’s okay. I’m a first year graduate student for speech-language pathology. I really feel that after reading this, I’ll be able to take this to my future clients and make sure not to label them as disabled. It all depends on how the person feels in certain situations. They may label their stuttering as a disability in one situation but not in the other situation. Thank you so much for sharing your experiences and helping us all learn a little more.

    • Thanks for reading and commenting! Stuttering is very personal for each individual and so therefore should be the label of disability. I find it so interesting that other people consider my stuttering to be a disability when I usually don’t!
      Good luck in your future career as SLP.
      Pam

  15. I so enjoyed reading your paper! In my head, stuttering is a disability as long as a person makes it a disability. It sounds like you have overcome many obstacles to get where you are – which is amazing! I’m sorry that you had to experience the loss of a job, but I am so glad you were able to find freedom. I hope you continue to share your story with young people to help open their eyes. You surely opened mine!

    • Hi Kristin – thanks for reading and commenting. Yes, I have overcome many obstacles and feel comfortable where I’m at on my journey with stuttering. There was a time when I hated it and pushed it away. Now, I accept it for what it is and work to have others accept it as well. -Pam

  16. Pam,
    Thanks for another great ISAD paper! I liked how you discussed the importance of acceptance. I’ve always felt that, at least with stuttering, there are different levels of acceptance: Maybe someone can accept when they have small moments of stuttering, but not big ones. Or maybe people can accept telling people they stutter, but can’t accept actually stuttering. Whether that’s true or not, do you think accepting oneself as “disabled” is like another level of acceptance? As if – okay, yes, I stutter, and I accept that, but I’m not like those disabled people… Do you think acceptance plays a role in why some people don’t like to think of themselves as disabled?

    • Joe,
      Thanks for reading and making me think with your great question. I do think acceptance has a great deal to do with people who stutter thinking of themselves as having a disability. I have two friends who probably fall into that category. One has absolutely no interest in “hanging out with” other people who stutter, so has never attended the local support group and wouldn’t think of attending a conference. I think she feels she would be “labeled” as a stutterer if she were around others who stutter, even though she very obviously stutters. In her case, I think the label of person who stutters is what makes her uncomfortable.
      My other friend is working on acceptance and even attended the annual NSA conference this year for two days, despite saying he never would. He says he doesn’t like to be associated with other people who stutter but really seemed to enjoy the connections he made at the conference.
      I think a real part of “the disability question” is the stigma that is attached to disability. Most people think of disability in negative terms, as a flaw, weakness or deficit. That’s why I think even the most accepting of persons who stutter may have difficulty accepting the other label of disabled as well.
      Me? I truly have mixed feelings about it. I don’t feel disabled but at times feel I need an accommodation (like not using the PA at school.) So, does needing an accommodation make me disabled? The social model of disability is fascinating and opens the door for so much discussion. Just the two instances of other people referring to my stuttering as a disability generated a whole ISAD paper and all of these great comments.
      Joe – do you think you are disabled?

      • Pam,
        I do think stuttering is a disability. Having written that, it seems hard to write that “I am disabled” for some reason. A few years ago, I think I might have said “no.” I think following people on facebook like Nina G and the “Did I Stutter” folks like Zach Richter have made me think differently about what it means to have a disability. It is a community, as Nina G shared, and one that I feel proud to be a part of, even if I never knew (or didn’t want to know) that I was. And I think that just because on most days stuttering doesn’t impact my life negatively does not mean that it’s not a disability. A mild something is still a something. I guess I need to work on that “I am disabled” acceptance. It has such a negative connotation, but it shouldn’t, right? That’s just society talking. Fight the power! 😉
        Miss you!
        Joe

  17. Pam,

    Thank you for another insightful paper. And your experience at the workplace.

    I guess you did not know kim (my wife) was a disability rights attorney. And gave a presentation on ADA/IEP’s and stuttering at NSP/NSA conference. As well, she was born in upstate New York. (Buffalo).

    Hope to see you again. Maybe in Atlanta.

    Always

    Michaelt

    • Hi Michael,
      Thanks for reading and taking the time to comment. No, I did not know that your wide was a disability rights attorney. That would have been very helpful for me to know back in 2006 when I was fired from a long time job due to stuttering. The attorney I did consult with did not have specific experience in disability rights. I also didn’t know your wife was born in New York.

      I definitely plan to be in Atlanta. I am already planning for 2 workshops, repeats of two that have been very popular. I am also working on the First Timers Orientation workshop. I hope you’ll be there. It’s been too long.

      Pam

  18. This was a very interesting paper! I was drawn to it because of “The Disability Question” title. I always feel uncomfortable labeling a person as having a disability because to me, I feel that means I am implying that they cannot do something. And perhaps that would be true in a sense, such as for example, someone confined to a wheelchair may not be able to play basketball in the traditional way, however, there have been many adaptions and many people can and do play basketball in their wheelchair. For that reason, I do not want to call someone disabled because I do not know that person and do not know what they can and cannot do. But you brought up many good points regarding how the ADA defines a disability and how people identified under that are protected. Even though I knew this, I had never considered this when deciding if someone had a disability. So, I think that has changed my view a little. I do think that stuttering should be considered a disability for the reason that it legally allows a person to be protected in the event of discrimination and allows for accommodations when that person needs it. However, I think it should be left up to the person themself do decide if they feel that stuttering is disabling to them and not society in general to decide that. Great paper! Thank you for sharing your experiences and persectives.

    Sarah

    • Thank you Sarah for your sharing your thoughts. I’m glad my paper helped you to really think about the topic of disability. I had really hoped that the title of the paper would be intriguing. I’m glad it drew you in. -Pam

  19. Pam, I am so inspired by your story. I have a nonverbal learning disability and it took some time for me to realize that it was okay and it was better to be open about it. I love how you overrode the stigmas attached to stuttering as I did with my learning disability and persevered.

    Until you had said it, I really hadn’t thought of stuttering as a disability. But now as you have explained and supported how it could be, I do believe that stuttering can be considered a disability. I also like how you mentioned that people who stutter could be covered over the ADA and receive different accommodating services, as well as not be discriminated against for their disfluency.

    All in all a very intriguing, inspirational, and well written paper. Thank you for sharing your story!

    -Lauren

    • Lauren,
      Thanks so much for reading and commenting. Interesting that you really didn’t think of stuttering as a disability until you read what I wrote. It’s just as interesting to me that fluent people in my world DO think of my stuttering as a disability, even though I don’t feel disabled by it.
      Perception is so important and very often people’s reality, right? -Pam

  20. Hello Pam,

    Thank you so much for sharing your story! I can imagine it must be hard to hear others label your stuttering as a disability when you no longer view your stuttering as a disability. Do you find that in more recent speeches you have given, or when you ask others about how they feel towards the term disability when thinking about stuttering that there is a large majority of people leading towards or away from using the word to define stuttering? If so, does the majority lean towards using the term? For those who view people who stutter as having a disability, do you think this is due to social stigma surrounding stuttering for people who are unaware or unfamiliar with stuttering? Thank you so much!

    • Hi Rachel, I think I have found most recently that more people tend to lean more toward thinking of stuttering as a disability, rather than not. I can’t really say whether I think it’s the majority, since I’ve only recently had this come up. I do think social stigma plays a role in determining whether one thinks a “condition” qualifies as a disability. When I am presenting about stuttering, I stutter and make no efforts to use technique. In my regular work, I also stutter but sometimes I apply efforts to stutter more easily and with less blocks, like by using pausing or slower rate. I think when people first hear stuttering and they are unfamiliar with it, that they do tend to think of it more as a disability.
      Thanks for reading and the good questions. -Pam

  21. Thank you so much for posting your experience. As a graduate student in SLP, I’m learning a lot about fluency disorders right now, and I’m glad to hear you used the iceberg analogy with your students! It is so encouraging to know that something we are learning about is being used in the “real world”!

    I also want to comment about your personal stance on “the disability question”. I agree that is a personal choice, but appreciate that certain accommodations and modifications are available for those that wish to identify as such. My mother is deaf, and struggles with “the disability question” as well. She has never considered herself disabled, and neither have we as her family. People do react to her in different ways. I remember one time when we were younger, a policeman let her go with a warning instead of a ticket when she told him to slow down so she could read his lips!
    -Brooke W.

    • Brooke, thanks for sharing about your mom, and her own dilemma with the disability question. Nice little anecdote about getting off with a warning instead of a ticket with the police officer.
      I think it’s interesting, and your share just made me think of this, that many people “with a disability” often think that it’s not them that’s disabled, but that it’s society that disabled. I once watched and listened to a TED Talk by a woman who stutters who contends that it is the listener who is disabled. It’s a great TED Talk by Sharon Emory, Google it. She really makes you think about the disability question and who in fact it applies to. Thanks for reading and taking the time to comment. -Pam

  22. Pam, thank you for a great article! I think that it opens up a dialogue for stuttering awareness, and part of awareness is acknowledging the unique abilities each individual has.
    Your confidence is truly inspiring! Do you currently work with an SLP for therapy? If so, what therapy technique is working/not working for you?

    • Hi Caitlin, I am not currently in therapy. I tried therapy as an adult about 5 years ago at my local college that has a communications disorders program and actually has a stuttering program and clinic. However, I did not feel I was benefitting from the therapy as, at the time, it was heavily fluency shaping based and that’s not what I needed. I needed to work on my feelings and attitudes about stuttering, as I had a lot of shame as I was working to not be covert anymore. I learned a LOT about therapy and actually wrote about that in another ISAD paper in 2009. I include the link here in case you’d like to check it out. Thanks for reading. -Pam
      http://www.mnsu.edu/comdis/isad12/papers/mertz122.html

  23. I think that the controversy surrounding the term “disability” is very interesting. In fact, it seems like a big part of the problem surrounding the term has less to do with the actual definition of a disability as a significant impairment in a life activity than it does the way people instantly judge someone who considers themselves to be disabled. Too often society considers disabled as equivalent to less. That being said, I do think that the person who stutters has the right to decide if they consider stuttering a disability because it would be unfair to classify someone against his or her will, but just as unfair to take away their right to consider stuttering as affecting participation in everyday life.

    • Olivia – you’re right. It does seem to be a controversy or dilemma or a question, stemming from the negative connotations the word disability seems to have in our society. It does equate to “less” or “deficit.” I think people instantly judge people anyway, usually silently, based on first impressions. Stuttering is complex in that you don’t immediately see stuttering in that first impression. It doesn’t pop up until we open our mouths, and then sometimes people’s judgment isn’t so silent anymore. Until society completely comes to terms with the fact that we are all differently abled, I think we’ll continue to struggle with the disability question. -Pam

  24. Hello Pam,
    Thank you for sharing your experiences with us! I am a graduate student learning to be an SLP and I think the question of “disability” usage is an interesting one. I am happy that you recognize it as a person dependent and individualistic choice about if a person wants to consider themselves as disabled or not. I found your experiences about openly disclosing to people and then speaking freely to be a great explanation . We encourage our clients to do the same and I am happy to know that it really does bring those feelings of liberation and confidence for some people who stutter. I was also really disappointed to hear that you were fired as a result of your stuttering, empathy and understanding of others can be lacking in this world, thank you for having the courage to stand up for what was right. Lastly, I appreciated your comment about everyone having something, as humans and professionals, this is something that we need to keep in mind when interacting with all people.
    Thank you so much,
    Michele

    • Hi Michelle, thanks for reading and taking the time to comment. I am glad to see that this paper gave you some food for thought. Good luck to you as you work towards becoming a SLP. -Pam

  25. Pam, you are an inspiration to all the audiences to whom you lecture. Your personal insight into stuttering poses some thought provoking questions. I am a graduate student in SLP who is currently learning loads about fluency disorders. One point you brought up in your paper was the “iceberg” analogy and how that described your earlier years of stuttering when the covert aspects were most impactful to your desire to communicate with others. Your personal story brings light to we “outsiders” as to the struggles a PWS faces on a daily basis and how their stutter can greatly impact their daily communication. The second point you discussed was that of “is stuttering a disability?” I believe that question must be answered by each individual who is a PWS. How impactful is the stutter to their everyday communication? I appreciate the fact that there are accommodations and modifications available to PWS if they feel that these are necessary to become more effective communicators.

    • Hi Kari – thanks for taking the time to read and comment. I achieved my goal by posing thought provoking questions. You and many of the readers seem to have really pondered this and I encourage all to do so, especially those going into the speech field as a profession.
      I like the way you use the term “outsiders” to convey those who don’t stutter. It’s very difficult to know the gamut of feelings we have as people who stutter unless you have been faced with the involuntary stoppage of the normal flow of speech. Good luck to you as you continue training to become a SLP. -Pam

  26. Hi Pam,

    I thoroughly enjoy reading your contributions – they are always so well-written and informative. I suspect that you may not fully appreciate just how much knowledge you have absorbed from the diverse online activities with which you are involved.

    I agree with you that whether (or not) we regard our stutter as being a disability is, indeed, a personal viewpoint. There were times in my life when (as a result of debilitating bouts of stuttering) I would have been classed as ‘disabled’, in accordance with the definitions provided by the World Health Organisation and current UK legislation. Yet, despite overt discrimination in the workplace, I never considered myself as falling within that category.

    It is relevant to point out that this occurred many years ago (at about the time that the wheel was being invented) – long before the arrival of the legislative safeguards. 🙂

    Although I have now progressed to a point where I no longer satisfy the above definitions, your paper has certainly given me food for thought.

    Over the years, I have met several persons whose stuttering is so severe that they are unable to communicate effectively in many situations. As a consequence, some of them experience immense difficulty in securing (or holding down) employment.

    Hey! – I wish I’d known about the 15% discount (on trains – for PWS) when visiting the USA. Do they offer additional concessions for a senior citizen? 🙂

    Pam, you have contributed so much to the stuttering community during recent years. It owes you an enormous debt of gratitude.

    Kindest regards

    Alan

    PS Our paths almost crossed last Saturday when we both had the privilege of (separately) addressing the annual Irish Stammering Awareness Day (in Dublin) via Skype. We missed each other by a couple of hours. 🙂

    • Hey Alan – thanks so much for reading and taking the time to comment. You are such a name in the stuttering community, it is indeed wonderful to get such great feedback from you. I’m glad this paper gave you a chance to ponder the question, and to reflect on “disability” even being a question at all.
      Yes, the trains in the US offer a 15% discount for a disability, as well as a senior discount, but you can only take one discount! 🙂 I figured why not when I took the discount. Society says I’m disabled, might as well use one of the advantages, as there are few advantages to be had by stuttering.
      And yes, I know that we were both on the agenda at the ISA day on Saturday. Trust me, I considered myself to be in great company to be presenting on the same day that you were. Unfortunately, we ran into some technical difficulties with the internet connection so I was not able to take any questions after my talk. I had wanted to ask the crowd how you had done!! 🙂 Will you be coming to Atlanta? I’d love to see you again. It was in Atlanta in 2007 where we first met, however brief it was.

      -Pam

  27. Hi Pam,
    I agree that legally stuttering is considered a disability and therefore there should be no educational or employment discriminations. However, whether or not I feel confident enough to call stuttering a disability to a person who stutters is a different story. I feel that whether or not the person considers it a disability is up to them. I think it could be very disabling, but some people feel that the word disability is demeaning to something that makes them who they are. If they are proud of their stutter, this may offend them. What advice do you have as a future professional in the field of speech-language pathology concerning treating people who stutter? Should we be open to discuss stuttering as a disability but allow the client to open the door to that conversation? How do we empower them to be proud of their stutter while still treating them?

    Thank you!
    Macy

    • Hi Macy, thanks for reading and for the great questions. Good luck in your career as a future SLP professional.

      I agree with you that some people who stutter may feel offended if they are referred to as disabled, especially if they don’t have that same belief themselves. I think SLP’s should be open to discussing this with a client, especially if the person’s stutter is severe and is clearly impacting their ability to communicate. An SLP could be a good advocate for helping a person who stutters to get school or workplace accommodations if needed. A person might feel more comfortable asking for an accommodation if they had a SLP advocating on their behalf. And I agree with you, perhaps the SLP should allow the client to open the door to that conversation.

      As for your last question, how to empower people who stutter to be proud of their stutter while in treatment for stuttering, I’m not actually sure how a SLP would go about that. To me, that sounds kind of contrary. A person who stutters and is proud of it may not necessarily be the person who stutters who seeks treatment. -Pam

  28. I am currently a graduate student studying Speech-Language Pathology. Today in class, providing disclosure before speaking was a technique discussed. I liked how you mentioned that to the group you spoke to at the beginning of the article. Although disclosing your stuttering may decrease anxiety, do you feel like you would still use modifying techniques? Do using techniques become a habit or do you have to consciously think of using them when speaking?

    • Hi Nick – thanks for the great questions. As I have cycled along on my stuttering journey, I went from being extremely covert to being overt. 95% of the time, I don’t use any techniques – either fluency shaping or modification. I find it’s easier to just stutter, as for me, use of techniques means I have to think about my speech too much. I want my speech to be automatic and effortless, even if it comes out stuttered. I think I am a great communicator, even with stuttering.

      That said, there are times when I do use techniques to help me smooth out my speech and to avoid blocking. Generally, this is for a big presentation to a large audience where I think I’m going to be judged on my performance. I’m aware that sounds a little contradictory, but I don’t beat myself up anymore for those times when I really don’t want to stutter. In those moments, I will use gentle onset or intentional elongation of a word to avoid a stutter.

      This, for me, techniques have not become a habit, because I don’t use them regularly. I have to think of using them when speaking and that is the very reason why I don’t like to use techniques. Unless, of course, you consider disclosure a technique, because that I do a lot. Best of luck. -Pam

  29. Hi Pam,

    I am a second year graduate student in Speech Language Pathology. As a future SLP I never really considered stuttering to be a disability. After hearing your opinion and your personal experience about whether or not stuttering is a disability, I agree with you that it should be up to the individual if they consider themselves to be disabled or not. I don’t think that I would refer to a PWS as having a disability unless they identified themselves as having one. My fluency professor emphasizes treating the whole person, including both the overt and covert aspects of stuttering. It was really interesting to hear your personal experience and how you worked through some of the covert aspects of stuttering. It really reinforced the idea to me that addressing the covert aspects can be just as important, if not more important, than the overt aspects of stuttering. As I enter the SLP profession, I will do my best to address the things that are most important to the client. Thank you for insightful artical.

    • Hi Kayla – thanks for taking time to read and to leave a great comment. Having been covert for so long, I agree that addressing the reasons behind why people hide their stutter is probably more important than addressing the stuttering itself. The stuttered moment goes away in a moment. The feelings, often negative, tend to linger much longer and can lead to deep feelings of shame. Good luck as you enter the SLP profession. -Pam

  30. Nice topic Pam. Good article. When the world defines my stutter a disability, I don’t become disabled. When I define my stutter a disability then I become disabled.

    • Thanks Bob for reading and sharing your perspective. You’re right, it’s all about our personal perception. -Pam

  31. Pam,
    This was such a great article that I really enjoyed reading. I was happy to hear that you had been asked to speak to a group of high schoolers about your stuttering. I think it is so important to provide education and awareness on the topic to individuals who do not know much about it. Your presentation clearly got the students thinking about stuttering and seemed to impact their previous thoughts about it. As for the disability question, I think it is up to the person who stutters to decide if it is a disability or not. I think it comes down to the extent to which a person’s stuttering affects their quality of life. Thank you for writing this article and getting me to think about stuttering in a different way!

    • Thanks for reading and commenting. It’s seems that the majority of people who have weighed in on this paper seem to feel it is a personal decision and should be left up to the individual who stutters to determine if they have a disability. Glad it got you to think of stuttering in a different way! -Pam

  32. Hi Pam,

    Thank you for sharing your experiences! Your article was very inspiring and enjoyable to read. I’m especially happy that I came across your article because I too have questioned the word “disability” when describing a person who stutters. As a matter of fact, as I was commenting on another individual’s article, I began to refer to their stutter as a “disability” but then went back and omitted the word. I am hesitant to use “disability” because for many people, their stutter does not place a burden on their lifestyle. I guess I feel that it all depends not the person’s own definition of the word. For me, any condition that physically inhibits you from being the person that you strive to be is a disability. For many, stuttering is not a disability but just another part of what makes them unique.

    Thanks again,
    Katie

    • Hi Katie – that’s very interesting that you went back and changed a comment you wrote to omit the word disability. For many people, it’s a dilemma, for as you note, it may not limit our life, BUT we may need accommodations in school or the workplace in order to communicate most effectively.
      Thanks for reading and taking the time to share. -Pam

  33. Pam,

    I am a graduate student studying to become an SLP. This article has been very thought provoking for me and I am still not sure where I stand! Like you said, I believe that calling stuttering a disability is both very situational and person dependent. I feel that it is a very personal decision and only the individual can make that decision to use that label for him or herself. I think that it is important that accommodations made available for PWS. However, I wonder if many people who stutter would avoid classifying their stutter as a disability due to either the stigma of the label, or perhaps they simply have embraced it and don’t feel that stuttering prevents them from achieving all they desire.

    -Kaylie

    • Hi Kaylie – I would venture to say that many people who stutter do not identify with having a disability due to the negative connotation associated with the word. I think because society thinks of disability as a deficit or flaw or “less than” that people who stutter don’t want that stigma. So, you’re right on point. Good luck in grad school. -Pam

  34. Hi Pam-

    As always I appreciate your point of views about various aspects of the topic of stuttering. Dealing with one’s stutter is a personal topic, and stuttering as a disability is a part of this.

    I do see stuttering as a disability. To me it is as much about people’s reactions to stuttering as about how the pws views this topic her/himself.

    At present I feel that stuttering has little effect on my day to day life. I am proud and sometimes amazed to have a career in which I talk with people all day, as a psychotherapist. Getting here took time and my being able to deal in new ways with people’s reaction to my stutter.

    Distributing my documentary film “Spit It Out” a decade ago helped me become more aware of disability culture. I have come to see stuttering as being in the category of unseen or non-apparent disabilities.

    Jeff

    • Hey Jeff, thanks for weighing in. Like you, I too am constantly amazed that I am in a job that requires so much talking every day. I make presentations to groups everyday as part of my job and sometimes I chuckle to myself that it’s the one who stutters doing this.
      Thanks for your opinion that stuttering is indeed a disability. Someday the day will come when there is not so much stigma surrounding disability and more people who stutter will be comfortable identifying as such. -Pam

  35. Hi Pam,
    It’s interesting that some high school students perceived stuttering as a disability even when you’re publicly speaking in the community and educating others about stuttering. I hope you keep us updated next year when you bring up the disability question to the students. It’d be interesting to see what they think after you implant the idea in their heads.
    Thank you for sharing!

    Lizette Flores

    • Hi Lizette – I definitely plan to bring up the disability question with the student group this year. It will be interesting to see their take on it. Thanks for reading.
      -Pam

  36. Pam,

    Thank you for sharing your experiences. I find it so great that you speak to classes and other groups about stuttering. You are changing people’s perspectives about stuttering and that is fantastic. That must be so rewarding.

    You bring up an interesting discussion topic – is stuttering a disability. I think the answer to this question is different for everyone. I think that it depends on the impact that stuttering has on your life.

    Courtney

    • Hey Courtney – thanks for reading and the great feedback. It is very rewarding to speak to various groups about stuttering. It helps me and helps them.
      I appreciate your opinion, and it seems to be shared by many commenters, that the disability question is an individual impact consideration. -Pam