ISAD Advocacy Spotlight-Jenny McGuire
This week I had the privilege of receiving, on behalf of Myspeech and the entire stuttering community, a proclamation made by the Denver City Council that the city officially recognizes October 22 as International Stuttering Awareness Day (ISAD). I worked together with Myspeech partner SLP Steff Lebsack--who is a tireless and passionate ally for PWS--to craft the proclamation with intentional, affirming language. We did this because we both truly believe in this positive narrative around stuttering, but also because we share an appreciation of the power of language. We knew that by using the term "communication difference" instead of "disorder," for example, we would be able to plant seeds of change into the minds of our audience.
Like every other marginalized community, stutterers have endured centuries under the subtle tyranny of limiting language. Dysfluency, disorder, pathology, severe, stuck, shy, nervous--these are just a few of the terms that have been ascribed to us by others. None of these words are innocuous. They all conjure feelings of deficiency in PWS, even when we don't realize this is happening. They also cast stuttering in a very specific light as a pathology, which signals to non-stutterers how they might frame stuttering in their minds. Much of this happens below our consciousness.
Language plays a huge role in how we perceive the world. At Myspeech, we are all about continual learning (for ourselves) and gentle education (for others). We do not subscribe to "cancel culture," and instead place emphasis on every human's capacity to grow and evolve. Life is for making mistakes, reflecting, and trying again next time. We firmly believe that.
Thus, it is in the spirit of reflection and learning that I share my thoughts on a news story that came out after the council meeting. I was grateful that there was a reporter from a local paper sitting in the gallery who took an interest in the remarks that Steff and I made to the council. How wonderful for stuttering visibility that this proclamation got written up!
As I read the article, I was thrilled to see pull quotes from both of our remarks.
That is when I saw it.
"There is a lot of narrative that stuttering is a disorder that has to be overcome," McGuire told the council. "This narrative (can cause) people who stutter to experience deep and painful shame when we work our tails off in speech therapy, but never get to overcome a mild stutter."
I'm certainly not the first person to be misquoted. There are numerous misquotes in this chunk of text, but most are inconsequential. It is that second to last word--mild--that makes my skin crawl.
I did not use that word. I know this because (a) I don't use adjectives like mild, severe, bad, good, etc. anymore to describe mine or anyone else's stutter, and (b) there's video of my talk.
What is so wrong with adding that in?
I was able to get through my written statement, bumps and all, which must have qualified me as a "mild stutterer" in the eyes of this reporter. Can't I just take that as a compliment?
No.
When we rate/judge/sort stuttering into categories like mild and severe, we continue the harmful narrative that stuttering is pathological, and something to be minimized/fixed/managed/treated. In this paradigm, which remains the dominant one, stuttering is counter to fluency, and fluency is valued while stuttering is not. Sometimes I stutter more than others, but my right to be heard doesn't change one iota on bumpier days. The same goes for all PWS.
Word by word, language frames how we perceive the world. Because this is an iterative process, it can be hard to identify the inflection point; when is it fair to say that language is causing harm, and when is it ok to just, "let it slide?" My answer is that advocates within a subculture, in this case the stuttersphere, must raise their hands when harmful language arises, no matter how innocuous a single word might seem in the moment.
Stigma has the gift of momentum on its side--language is used to both create and maintain stigma, so it is a self-sustaining system that just keeps chugging along effortlessly at a very efficient clip. It takes each one of us, when we have an issue near and dear to our hearts, to "say something when we see something." Speaking up throws a stick in the wheel, breaking the quiet hum of momentum that keeps stigma alive and able to be passed on throughout generations. Speaking up is not about "playing gotcha" or "canceling" the person who used the stigmatizing word, it is simply about raising the consciousness of the conversation and pointing out the insidiousness of the white noise that surrounds us daily.
So thank you, Denver Gazette reporter, for your doing the important job of reporting on the government in Denver. You are steeped in this culture that stigmatizes our way of speaking, so of course you have taken that on as your own. We all have. I hope you feel armed with information to elevate the conversation next time you have a chance, because stutterers love when fluent allies throw sticks in the wheel for us.
