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A Reflection on NSA 17 Dallas

Now that a week has passed since the National Stuttering Association conference in Dallas I’ve gained enough objectivity to reflect on two emergent themes: taking risks and intimacy.

Having been to one conference already, this year I had a different set of expectations. I knew how things were organized and had none of the first-timer anxieties. This comfort allowed me to take some risks that I never would have last year. Even before the conference began, I’d arranged to share a room with 3 women I didn’t know well, I joined a writers group that submitted a proposal for a workshop, committed to helping out a friend with a kids’ workshop and jumped at an opportunity to be in an improv skit in front of the other chapter leaders. During the conference, I kept up this momentum by participating in workshops that took me waaay out of my comfort zone, attending a drag show, inviting some teens out to lunch, and participating in a StutterTalk episode. I could go on.

Nor was I alone in this risk taking. Perhaps because it was my second conference I was able to see more clearly the actions of those around me. It seemed that people were constantly introducing themselves to others– not an easy task when you stutter. There were folks stuttering openly in the Starbucks line and joining in conversations with strangers at the pool. While I was aware of some of that last year, I was so overwhelmed by all the newness that my view was somewhat obscured.

What I found this year was that being able to take these risks opened me and others up to the intimacy available at the conference. The risks we took helped to peel away all the layers built up to cover our shame and fear of stuttering and at the same time created a pathway to connect deeply with both community and with individuals. Perhaps as well, it was the climate of the hotel. It was much darker than the Hyatt where last year’s conference was held. Or maybe it was the relatively few places to go outside the hotel that forced us to stay in and huddle around the bar. But, I think it was bigger than that.

Like many introverts who stutter, I often find socializing difficult and draining but I do crave deep exchanges. That is where the distinction lies. ‘Socializing’ is something we do with strangers or only somewhat familiar individuals. It implies superficiality. However, there was nothing superficial about our conversations during the conference. Rather, they leapt immediately to intense subjects like faith, substance abuse, disability and mental health, and often how these interact with our identities as people who stutter. Even those conversations that had us rolling with laughter seem significant in hindsight.

I don’t think this would be possible if we were not all people who stutter. We have this wonderful common framework that unifies us. In an everyday setting it might take years of knowing someone to dig this deep, but because we are willing to take these risks we get to level-jump past all the bullshit and dig into the really meaningful stuff.

Now that the conference is over, I can’t help but wonder how we continue the momentum and use it to create intimacy with our allies and build bridges to other communities. How do we take what we learned from the workshops on social justice and take even greater risks outside of the safety of the hotel?

What I’m left with is so similar to what I felt after last year’s conference. The reflection I wrote last year ended with the sentiment “In my heart and mind the conference is not really over. There is so much work to be done”. I feel exactly the same way now.

Stuttering Privilege

My friend Chris made an interesting observation awhile back. He suggested that stuttering is a unique disability because we know what it feels like not to stutter– that is, people who stutter know exactly what it’s like to be fluent. This isn’t always true of other disabilities. For example, Deaf people don’t typically have periods where they can hear clearly, and people with dyslexia don’t move in and out of being able to read well.  I’m sure there are other exceptions, but stuttering does seem odd because of its variability. Some days we are more fluent than others. Our periods of fluency can last for weeks or even longer. Likewise our stuttering can be more or less pronounced over periods of time.

I have experienced this throughout my life for sure. Even when I was covert, I had times where it was much harder to hide or avoid my stutter. I know stress contributes to this, but sometimes it seems completely random. I often feel like I am moving up and down a scale. I can’t predict on any given day where I will be on the scale either; it’s often a surprise.

For the past few weeks, I have been much farther on the dysfluent end of the scale than I typically am. I am blocking much more often and those blocks last longer. My secondaries are flaring up as well.  At times I make a weird squawking sound when I can get a little air to pass through my vocal folds–at least that’s how I imagine it. I can only describe it as something between a sea lion and a vulture. It’s not a pleasant sound– and I do find a lot stuttering to be pleasant.

Because of this long stay on the more dysfluent end of the scale, I have felt some of the progress I have made in accepting and loving my stutter becoming challenged. I have dug up old speech tools to get through the trickiest situations. I have even considered therapy again, (granted the therapy I’ve looked into is through AIS and is more in-line with Avoidance Reduction Therapy and Stuttering Modification). I’m going to borrow some language from the LGBTQ community when I say, it is easier to be ‘out and proud’ when I’m not stuttering as much.

So why do I value the periods of relative fluency over these periods of hard and frequent blocks? Going back to what my friend said, might relative fluency at times make periods of strong stuttering harder to cope with? I think this is true. I can’t help but pine for the days when things will easier for sure. but I think there are other contributors.

On the phone a few days ago with a Canadian friend who stutters, I blocked and squawked and struggled to hold up my end of the conversation, and in the end felt some of the old shame creeping back. I know she wasn’t judging me, but I felt bad for feeling bad. These same feelings come up when I think of my next NSA chapter meeting. I want to tell my friends that I’m having a hard time, but I feel like I shouldn’t be. If I really have accepted and learned to love my stutter, shouldn’t that always be the case– even when the going gets tough? I also have to admit that I’m worried this dysfluent period will still be going on when I present at the NSA conference. Not only am I worried about taking too much time and making unpleasant sounds, but of having to use speech tools in front of my peers who have rejected traditional techniques. I know deep down that all these thoughts and fears are unreasonable– the place I should feel safest is with my friends who also stutter– but I think these feelings might be coming from a valid place..

I don’t want to diminish the pressure fluent society puts on us, or the pressure we put on ourselves individually, but I think the stuttering community is not completely innocent of assigning a privilege to being more fluent, lacking a lot of secondaries or having a more ‘pleasant’ sounding stutter.  Maybe this is my own paranoid hang up but I do have some basis for thinking this.

I’ve done a fair share of participating in video chats with other stutters. Usually these are pretty equitable, but there are times when the more fluent people dominate or when someone gets interrupted or talked over while they are working through a block. It doesn’t happen often, but it does occasionally–it’s happened to me. Probably the worst thing I’ve heard about was when someone with a strong stutter was asked to shorten a question during an NSA presentation, for the sake of time.

I love podcasts by and for people who stutter, and I think these could be a great place to celebrate the variability that we stutterers share. I really love the most recent episode of StutterTalk that features some of the NYC chapter folks. I appreciate the decision to leave in (all or at least some of) the blocks and longer stutters. We also need to be willing to let the squawks, blocks and odd secondaries out, especially around each other. There is beauty in them.  When we are together we need to encourage the folks with the strong stutters to have the floor for as long as they need. Not only will their voices help define stuttering to the rest of the world, but I also believe having this exposure will help us when and if we come to a difficult place in our own journeys.

Tornadoland

Despite getting to a place where I feel very stutter-positive and overt, I still only disclose that I stutter if I have to. I’ve told my students and their parents, my coworkers, hair stylist, physician and of course my friends. Usually I don’t tell strangers unless it comes up, like the Uber driver when I went to DC or the new hygienist at my dental office. I haven’t really perfected a general statement, so usually wait for an appropriate opening or when things are getting awkward. But a few difficult situations have happened lately that have pushed me to disclose more often.

First, a few weeks ago I was in a car accident on my way to work. I had to talk to the other driver, a police officer, tow truck driver, both my principal and assistant principal, and another coworker who came to offer help. I was very shaken and my stuttering could only be described as quite noticeable. I struggled to get every word out. Needless to say, I had to disclose. I was afraid the police officer would think I was being dishonest or think I had a head injury or something. However, I was left with a feeling of success even though it was a pretty awful experience.

The other hard thing was that in February, our 15 year old dog had a stroke and passed away. Speaking with vets is hard enough, but the panic and grief involved made it so much harder. This, and the fact that many conversations were over the phone.  I had to disclose and every time and I felt better for doing so.

One not-so-hard thing is that we now have a new puppy. Her name is Zuzu and she is a 2 month old Lab-Pit mix. I have had to recite this list of information to so many strangers in the past week. Apparently puppies are stranger magnets! I’ve felt really good about this experience as well.

This song has been running through my head for the past few months and I feel like it fits these situations well.

Nightmare

nightmare 001

This morning over coffee, my husband told me of a nightmare he’d had involving a body buried deep below his childhood home. In the dream, it belonged to someone he had murdered and he was afraid of it being discovered. I actually looked this up on a dream interpretation site, and it said a dead body that you have to hide represents guilt.

As he was telling me this dream I recalled a similar dream I have had on a regular basis. My dream always takes place in the house we moved into after my sister was born and my mom and stepdad finally got married. I lived there for 7 years until I went away to art school, but it was not a happy house. It was far from where my dad and brothers lived, and I never felt like I belonged there. From my perspective, my stepfather was a profoundly unkind person. He seemed to get pleasure out of causing other people pain. He criticized the way my mom had raised me and my 2 older brothers, saying we were lazy and ungrateful. He picked on my speech with mock concern. He attended meetings with my speech therapist and pretended to care about my progress, but it seemed more like he was trying to catch me doing something wrong. During those meetings my therapist told my mom and stepdad that I was able to use fluency techniques successfully in the therapy room. This was true, but like many other people who stutter, it was really difficult for me to generalize these to everyday life.  

If I stuttered at home he would make me repeat what I was saying and insist I use the techniques I learned in therapy. Sometimes he would make me repeat something as many as 10 times. If I failed to speak fluently he would get angry and call me lazy and complain about the money they were paying for therapy — I believe my therapy was provided by the school at no cost to my parents. Of course I was rarely able to produce any fluent speech under that kind of pressure. Often his anger made me stutter even more. He also had a habit of rapping me on the top of my head with his knuckle if I blocked too long on a word.

Needless to say, this was not a good environment for me and no one would be surprised that I had nightmares about that house. My nightmares usually involved me realizing that I had murdered someone and hidden the body in the garage or back yard. Some event was about to happen where I was sure this body would be discovered and I needed to move it before it was found.

It seems funny that my dream is so similar to that of my husband’s, especially since we came from very different homes. But I realized as my husband was telling me his version, that I haven’t had this dream in a very long time. I would even venture to say that I haven’t had this dream since I started accepting my stutter and became overt about it.

I’m not sure what the body represents, but I don’t think it represents guilt. I feel much more guilty now about being covert than I ever did while I was living that way. It could represent my anger toward my stepfather, or maybe anger at my mother for staying with him for so long. I suspect though, that it represents my negative feelings toward stuttering. Now I have given that ‘body’ — all my anger, frustration, fear, humiliation, and shame over stuttering, a final burial and sent it away to wherever terrible symbols go when they die.

If I ever have that dream again I will re-interpret what it means, but for the time being, I’m sticking with this idea.

Control

I hate the term control freak for many reasons. I think it’s more often used to refer to women, which is sexist, and I also think the word freak is ableist. But number one on my list is because I’ve been called one so many times before.

I’ll admit that I do like to keep things tidy and I like certain plans to go the way they were originally set out to be. I can be flexible, but it takes work. I like routine on busy days and I need lots of time to decompress after any type of socialization. But is this really being a control freak?

I know I used to need control a lot more than I do now. I’m not sure exactly what has changed but I have a few suspicions. I think growing older has mellowed me out, and I think dealing with less anxiety has helped a lot as well, but I suspect becoming overt about my stuttering has been the greatest overall contributor.

Being covert can be a form of perfectionist control over they way we are perceived. Instead of just being themselves, the covert stutterer attempts to delude others by managing their impressions. Some might say it’s just about how we sound, but I would argue that it’s much more than that. Yes, we try to control which words we use and that we are thought of as fluent, but it’s more insidious than that.

Once a covert person starts changing words, they run the risk of creating sentences that have bizarre construction. Similarly, they may avoid answering certain questions, give false information (ie a different name), or show less than they know about a topic of conversation. Some people who are covert even avoid social interaction. All this creates worry about how people perceive their intelligence or even mental health.

When one is a perfectionist in such an important part of life as how they are perceived by others, it’s understandable how that can affect other parts of their life. I found myself needing order in the things around me first. I felt that if my room or apartment was messy I’d have a harder time controlling my speech. I knew that when I was upset or emotional I was more likely to stutter or have blocks.

Now that I don’t try to hide my stutter, I feel a lot of that anxiety and need for control has fallen away. At times I still struggle with the vulnerability that comes along with stuttering openly, but it doesn’t cause me too much distress. I would even go so far as to say that I’m learning to enjoy vulnerability. For me it’s a reminder that people are perceiving me for who I really am.

Please check out my guest post on the Did I Stutter blog (and while you’re there read the other great posts)

http://www.didistutter.org/blog/from-covert-stuttering-to-solidarity

For lots of great reading on stuttering check out the International Stuttering Awareness Day Online Conference papers:

http://isad.isastutter.org/isad-2016/papers-presented-by-2016/

Change the Environment, Not the Child

 

Last week I had several times where my students could not accomplish a task in their general education classrooms, even with support, but were able to accomplish it easily in the resource room. In the second setting they even seemed to need less support. This reminded me of how, when I was young, I could easily do the techniques my speech therapist showed me in the therapy room, but I couldn’t even begin to use them back in my classroom or out in the world. It wasn’t until I returned to speech therapy in college that I could use techniques out in public.

What does the private setting do to allow for the acquisition or demonstration of skills that isn’t available in the general classroom or outside world? My guess is that there are fewer distractions, more privacy and a generally safer environment. So the next logical question is how can we help kids transition from being able to demonstrate these skills in the individual or small group setting.

But is that really the question we should be asking? What other variables in this equation could be changed? When I think back on my experience in speech therapy, I don’t think there was much more that could have happened in the therapy setting to prepare me for the outside world. I would argue that what was being expected was not developmentally appropriate for me. What would have been more appropriate would have been to teach me how to navigate through a classroom or outside world as a child with a stutter.
I think the same can be applied to my students who face a myriad of processing, sensory and expressive challenges. If I can teach them how to ask for accommodations such as an opportunity to do their work in a private and secure area rather than an overwhelming and stimulating classroom, I think they will also feel more accomplished.

Trust

In the past few weeks of work I have been able to catch up with most of my friends and find out what they did over the summer. The best thing I’ve heard by far is that my friend Genise climbed Mount Kilimanjaro in Tanzania. But I have to say that wasn’t so much the immensity of the mountain or the extreme climates and elevations, as the way she described the challenge and how she accomplished it.

You almost have to know Genise to fully understand how great her account was. She has the most animated way of talking and the hugest smile ever. She’s also tiny– not someone you’d necessarily expect to take on such an endeavor.

As she was recounting the experience to me, Genise said that several times she didn’t think she’d be able to go on. What made her keep going was the relationship she had with her guide Saidi. He has been climbing Kilimanjaro for 24 years.  Saidi was a man of few words, so when he spoke, she listened. His daily saying to them was “Hakuna Matata.”  (“No worries” in Kiswahili.)  Because he had such a calm demeanor, she was calm too. But the most important part of the relationship, was that she trusted him. Completely. She knew that nothing was more important to him than getting her safely and successfully up the mountain.

I asked Genise if after trusting another person with your life, do you feel more likely to trust others? Her response was yes and no.  She trusted Saidi with her life because he was experienced; he knew what he was doing. She knew foremost that he wanted her to get to the top of even more than she did. In addition, he listened to her if she expressed any concerns as they went up the mountain. She trusted him to tell her to turn back if it became a life or death situation.

An easy take away from this story is that anything can be accomplished through trust, right? But I think there are much more nuanced treasures to glean from this, both as a teacher and as a person who stutters.

As a teacher I want to build trust with my students, many of whom have had difficulty trusting teachers and other authority figures. Many have experienced traumatic situation in their homes or even at school and they are often on guard around adults. Each of the reasons Genise trusted Saidi with her life is something easily applied to a classroom. The one that jumps out first is ‘staying calm’. This can be particularly challenging when a student is having a ‘meltdown,’ but showing that you are there to support them whatever the situation is, can go a long way toward building trust. The next is ‘showing that you know what your are doing.’ How many times have we heard or said, “I don’t know what to do with you?” Those words hold a lot of meaning that we may not intend to convey. But I think the most important takeaway from is a willingness to listen to concerns and treat them respectfully. I think this builds trust, no matter the situation.
As a person who stutters, I am often on the other end of the trust dynamic. When I take the risk to stutter openly, I am putting trust in another person the moment I open my mouth. I am saying ‘I trust you enough to show you this really vulnerable and sensitive part of myself.’ I can’t help but wonder if there is reciprocity that comes naturally with trust? Will stuttering openly with my students, as I do, will help them come to trust me faster. I can’t help but believe it will.

Genise Mt K