Quarantine Fluency

2020 has challenged us all in unique ways, but I have encountered a rather personal challenge that has left me feeling a great loss:  I feel like I don’t stutter anymore. 

The types of situations where I stutter most involve talking to people I don’t know well or where communication feels rushed. At work, that might be talking to a parent or an administrator. In public it might involve ordering at a restaurant or asking where to find an item at a grocery store. 

Because of a clotting disorder that puts me at high risk for complications if I were to contract Covid, I infrequently leave my home. I talk almost exclusively to my husband, pets, or on the phone with my daughter who is away at college. My work involves mostly being in zoom breakout rooms with only a few young students I know well. I use an app to order groceries for curbside pickup. The only time I leave my house is to walk my dogs. I don’t go to restaurants or places where I might have to talk to someone. Social distancing and mask-wearing make it easy to not talk to neighbors or people out on the street. So in other words, I encounter little to no situations where I might stutter. 

Stuttering activism has also taken a back seat to other more pressing issues:  racial justice, the election, and surviving through a global pandemic. When I look at my social media feeds, they’re predominantly filled with politics, even on stuttering awareness day– which I, sadly, didn’t even mark. 

The saddest part is that I feel like I’ve lost touch with the stuttering community. This has left a gaping hole in my life. This year there were no conferences or support group meetings. Some meetings are held virtually, but I can’t face more zoom calls after working that way all day.  I might even say I feel am no longer worthy of the community. Can someone who rarely stutters call themselves a stutterer?

Fortunately, this pandemic is not going to last forever. I will eventually leave my house and will inevitably start stuttering again. In the meantime, I have begun some baby steps in getting back to the place where I was before the pandemic. I have joined a stuttering positive reading group hosted by Patrick Campbell and Josh St. Pierre. I have also committed to writing more blog posts in the next few months.  I’m even considering adding some voluntary stuttering into my everyday life. Hopefully, when this is all over, I can reconnect with the community and spend some time sharing about the past year. I’m sure others have had unique experiences as well.

Plot Twist

The other day I was listening to the Hidden Brain podcast. The episode was called “Why We Love Surprises: The Psychology of Plot Twists.”  The show host, Shankar Vedantem made the claim that we love surprises. Movie directors and authors have figured out that humans “have blind spots in the way they assess the world. We expect a certain amount of consistency, and when something doesn’t fit in that predictable pattern, we are surprised.” The episode goes on to explain why we love surprises. Shankar talks to Vera Tobin, a cognitive scientist at Case Western Reserve University and the author of “Elements Of Surprise: Our Mental Limits And The Satisfactions Of Plot.”

In Tobin’s study, they looked at ‘plot twists,’ or those surprises where what you thought was happening, turns out to be something different. So you get this surprise where the rug is pulled out from under you, and instead of thinking that the story has told you one thing, it’s telling you something different. You believe that you were mistaken and that now you have a new understanding. They go on to talk about the plot twists in The Sixth Sense and The Usual Suspects. I won’t spoil those for you. But it turns out people really enjoy plot twists. They love unexpected events that don’t threaten them in any way. They love how these events challenge their preconceived ideas and the growth they get from the experience. Likewise, being surprised activates the pleasure centers in our brain and gives us a nice shot of dopamine, which makes experiences more enjoyable.

So it occurred to me that stuttering could be viewed as a ‘plot twist’ of sorts. A ‘blind spot’ exists when others expect our voices to be much like the other voices they have heard before. Our stuttering throws in a ‘plot twist.’  I know I am constantly surprised by my own stutter. I am also very happy to be surprised when I hear other people stutter. These ‘plot twists’ help to create more emotionally engaging and gripping encounters. Likewise, they add depth and complexity to our identities. So next time you stutter with someone new or in a novel situation, think about the ‘plot twist’ and enjoy the surprise!

 

Hidden Brain

Hard Times

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Several things have occurred in my life lately that have left me feeling very dysregulated. In July my father passed away after a long struggle with Alzheimer’s. In August my only child left home for college. Also, recently I had a breast cancer scare, which fortunately ended up being fine, but was very scary, nonetheless. And, to top it all off, I have some very challenging new students on my caseload this year. 

If you know much about stuttering you probably know that these kinds of stressors can have an impact on fluency. I’m not exactly sure why, but extra stress seems to tax many of the parts of the brain used in speech production. 

Needless to say, I have had a bitch of a time getting my words out. Stuttering can be exhausting and annoying. Because of this, I fell back into some avoidance habits. Not only did I avoid tricky words, but I also avoided situations. I turned down invitations, ignored phone calls from friends and even asked not to record a video of myself reading part of a chapter I wrote for the book I’m about to discuss. This created a shame spiral that left me feeling trapped, anxious and depressed. The worse I felt, the more I avoided and the more I avoided the worse I felt. 

Then, a few days ago, I received a surprise in the mail: my copy of the book: Stuttering Pride and Prejudice. This book is all about challenging the idea that stuttering is “inherently negative”. First I read Emma Alpern’s Essay, “Why Stutter More?”1 which reminded me that stuttering is actually desirable for me because it is both thrilling and my real voice. I was also reminded by Chris Constantino’s ‘stuttering as hardship’ 2 narrative that stuttering is “something that adds, rather than detracts from my speech.” 

With these reminders, I have been able to reframe my increased dysfluency in a positive way. I am reminded that stuttering adds a richness to my current experience almost in an ameliorating way. The harder my life struggles are, the more I stutter as a way of balancing out the pain. I am now embracing my increased stuttering as a gift to help balance the pain and struggle of my everyday life. 
1. Alpern , Emma. “Stammering Pride and Prejudice 2019: Difference Not Defect.” Stammering Pride and Prejudice 2019: Difference Not Defect, J & R Press, 2019, pp. 19–20.

2. Constantino, Christopher. “Stammering Pride and Prejudice 2019: Difference Not Defect.” Stammering Pride and Prejudice 2019: Difference Not Defect, J & R Press, 2019, pp. 213–214.

 

 

Thoughts on Inclusivity

In 6th grade I started at a new school. My teacher  was cruel and sarcastic. He made me read out loud even though I had an accommodation not to because of my stutter. He mocked me and taught the other kids to be impatient and mean. He cared more about getting a laugh than hurting someone. Once during free reading time he stopped by my desk and yanked “Island of the Blue Dolphin” out of my hand and said there was no way I could be reading that book. He asked me to read part of a page out loud. I blocked on the first words and he laughed saying he “didn’t think so.”

I’ve recounted this story many times as an example of terrible teachers and ignorance of stuttering but I think what bothers me most about the event is the assumption he made; that my stutter indicated I was less intelligent than I actually am. I think this is common among people who stutter. I’ve heard variations of this mentioned a lot. 

During the conference I had one particular poolside conversation about how frequently we hear some version of, ‘just because I stutter doesn’t mean I’m not smart.” And how this statement privileges stuttering above other disabilities such as intellectual disability and how that perpetuates enmity within our community. Why do we as people who stutter feel the need to separate ourselves from other disabled communities?

Abled society treats people with intellectual, cognitive and/or developmental disabilities with a lack of understanding of their humanity. They are denied rights to autonomy, dignity, family, justice, life, equality, self-determination, community participation, property, appropriate healthcare, and access to voting. Moreover, there is an unfounded belief that people with intellectual and/or developmental disabilities cannot and/or do not contribute to society. 

One workshop I attended that seems particularly relevant here was one on Intersectionality. While I know it’s not perfect, The LGBTQA+ community serves as an example of inclusion by trying to build their identity as a whole. I’ve heard many individuals identify as LGBTQA+ rather than their single letter. As a whole they don’t seem to exclude a subset of their community as less desirable. I believe the disabled community can learn from them.

As fellow people with disabilities we should have a keen awareness of the prejudices and maltreatment of people with cognitive and/or developmental disabilities. Who better to advocate and embrace this subset of our disabled community? If we don’t bring them into the fold who will? It’s time we stop saying that just because we stutter, doesn’t mean we’re not intelligent. 

 

Tattoo

The other day I finally got a tattoo about my stutter. As you can see in the picture, it’s a flying barn swallow. I chose it to symbolize the freedom I’ve gained from accepting my stutter, but also freedom from all the negatives I associate with it:  fear, avoidance, self-loathing, and the abuse I experienced as a child from my step father. Making this sense of freedom permanent has been a pressing part of my stuttering journey. My hope is that this bird is a constant reminder about how far I’ve come and how I never want to go back.

This is the second tattoo I’ve gotten from the artist Evan Morgan–actually my second tattoo ever.  After years of thinking about getting one, I knew Evan would be the tattoo artist I’d use because my husband got a gorgeous sea monster from him. Finding out that Evan stutters cinched it. Getting a tattoo is already a weirdly intimate experience: the proximity, the sensations, the length of time. To have the artist also be a person who stutters made that intimacy even stronger. Not only do we have a similar shared history, we were free to talk without any fear of judgment or misunderstanding.

While he was working, Evan said something about the pain of the tattoo process that I think could also be applied to stuttering; “If you expect pain you’ll find it but if you just expect sensation and ride through you can have a rich experience.” It’s true, some sensations of stuttering are intense, some can be uncomfortable but many are just sensations. I’ve even found some stutters pleasurable or amusing

I hesitate to draw any more similarities between tattoos and stuttering because one is totally voluntary and the comparison doesn’t seem fair. But, like stuttering, tattoos can also elicit a range of responses from others. Other tattooed folks and other stutterers are often the kindest and those who are the least familiar, the most unkind.

Lastly, while tattoos are personal they are also often for everyone else to observe. I may not always want to spill out my whole story for anyone who asks, but I hope to use this tattoo to open up conversations about stuttering and perhaps educate a few.

Stuttering & Alzheimer’s

My dad and I have never had the best or closest relationship. He left my mom with 3 kids when I was 4 years old and moved into a dingy little mobile home on the edge of town. I would learn later that he’d had a affair, but I also know he and my mom weren’t very compatible. 2 years later my mom moved us a few states away and while he had visitation rights, I didn’t see him all that often. We used to spend a month in the summers with him though, and I have great memories of those times.

The times we were with him were always about doing stuff: camping, boating, skiing; never about real communication. Even though we both stuttered, He never talked to me about it. As a child I was happy for this. My mom, stepdad and speech therapists made me feel like I wasn’t even trying to work on it. It was my personal weakness that would suddenly not be an issue when I was with my dad.

Years later I moved to Chicago which was only a short train ride to my hometown and we saw a lot more of each other. Our relationship strengthened quite a bit and we really started to talk about things. We often sipped wine and talked for hours about politics, books, history and philosophy.   At this point I was completely covert about my stutter but much more aware of his. It made me feel uncomfortable. It was the last thing I wanted to talk about.

Fast forward even more years and we find ourselves in the same town again. About 5 years ago he received an Alzheimer’s diagnosis and it became evident that he was losing the ability to care for himself. When we moved him here he could still do some cooking and didn’t need us around every day. Even though I read everything I could find, I had no idea what caring for a parent with Alzheimer’s would really entail.

Over the past few years, the intersection of stuttering and Alzheimer’s has made communication increasingly difficult for him.  He has lost his huge vocabulary, and struggles to come up with the names of people and everyday objects. When he does have an idea of what he wants to say, he often loses it if he gets stuck in a stutter. I know he is frustrated and depressed about it.

I regret not pushing him to talk about stuttering while he was able. There was a small window after I accepted my own stutter and before Alzheimer’s stole his ability to comprehend where we might have had a real conversation.  It’s hard to say how it would have gone, but perhaps it would have opened a door to more frank discussions now. Stuttering is threaded through our whole lives and experiences together but it has left us in very different places. I can mire in my own regrets, but that isn’t very productive so I will just have to accept that it is what it is.

I don’t have a good way to end this and I will most likely write more as time goes on.

 

Spreading Awareness

It’s International Stuttering Awareness Day once again! This year I REALLY wanted to attend the NYCStutters one day conference, but with parent/teacher conferences last week and a tight schedule at work this week, I just couldn’t make that happen. I also couldn’t make the zine I had planned happen either. I waited until too late to try to figure out InDesign and even with the help of my daughter and husband who both have experience in graphic arts and layout, we couldn’t get it to work. My apologies to those who submitted work. There was one really amazing comic submitted by a young girl from chicago that was so great I got permission to share it here.  Kudos to Stella M. She has a serious future in stuttering advocacy and comic arts!

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Despite all the disappointments, I did get to participate in a stuttering awareness day activity with the American Institute of stuttering. We set up a table on the Atlanta BeltLine near the AIS office and spent the day educating passers by on stuttering. We couldn’t have asked for a more beautiful day and most everyone we talked to was responsive and learned something about stuttering. We even had a few folks hang out and talk to us for a while.

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Reflection on NSA Chicago 2018

All year I’ve looked forward to the National Stuttering Association conference because it would be held in downtown Chicago at the Sheraton Grand Hotel.  Leading up to the conference I was sure I would have all sorts of emotions once back in my former home town, especially ones involving my old covert self vs my new stutter-positive self. But surprisingly this didn’t really happen. The thing is, I didn’t go to any of my old haunts. The conference was held in River North– A place I very rarely ever went over a decade ago when I was living in the city. I also did a lot of the touristy things I was too ‘cool’ to do back when I lived there. If I’d had a few more days (and could time travel), I’d have loved to show my friends Wicker Park as it existed in the 90’s: Earwax, The Empty Bottle, Milk of Burgundy etc.. But those places are gone– at least the versions I used to know.

Unexpectedly this conference turned out to be much more about stepping outside of my comfort zone rather than stepping back in. For instance, I was sad to not have a few of my conference besties there, but that pushed me to reach out to new people. Many casual acquaintances were solidified into friends-for-life, and I met so many incredible first-timers and folks I’d never talked to before. Having the opportunity to introduce old and new friends to places like Navy Pier, Water Tower, Millennium Park and Chinatown created memories to last a lifetime.

I have to admit that I didn’t participate in as many workshops this year. Our creative writing group held ours for the second year in a row, and it went really well. I also got a lot out of one focused on Mindfulness and one on the cultural impacts of stuttering. But the workshop that stood out the most for me involved building up resilience through repeated tasks that increase in difficulty at each level. Fluency may no longer be a goal for me, but I believe this method can be applied to avoidance reduction and desensitization very well.

Pushing my comfort zone probably peaked on the last day of the conference. I’ve always wanted to do something for open mic, but have been fearful of getting up in front of a lot of people.  However, this year I took it a step further and participated in the monologue portion of the closing ceremony. I literally spoke in front of the entire conference!

Over the next year, I hope to keep this momentum going. I want to do more presentations at work, increase my involvement in stuttering advocacy and generally be more social. Stepping outside of my comfort zone seems less of a challenge now and just a place I want be.

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