About 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?