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.

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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

Advertising in the Classroom

Last year was a huge year for me in terms of accepting my stutter and becoming overt. I was lucky to be teaching the same kids for the second year in a row. These kids were used to me stuttering and were pretty nonplussed when I started talking about it. It helped that the class was all working on learning about disabilities and how to advocate for ourselves. While I was open with my students, I only disclosed to a few colleagues and I didn’t do a good job of telling parents. In fact I only told one parent that I stutter. Despite this, I have no regrets. It was a huge year for me and I’m proud of my accomplishments.

At the NSA conference this summer I attended 2 workshops that helped me with advertising. The first was titled ‘Coming out of the Covert Closet’. In this workshop we made a promise to ourselves to disclose to someone that we stutter. The other workshop involved going out into public and telling strangers that we are people who stutter and asking if they had any questions about that. Both of these workshops were completely out of my comfort zone and helped me grow. In fact, after the conference, I spent the rest of the summer sending out emails to colleagues, administrators and friends telling them all about my stuttering story, explaining about covert stuttering and talking about how I’m learning to own it.

Because I have a whole new group of students this year, I have a fresh opportunity to talk to parents. So far the two parents that I have talked to about it  have been pretty great. As part of our beginning of the year responsibilities, we are supposed to make contact (either in person or by phone) with the parents of every child on our caseloads. Thankfully I was able to speak in person to 4 of my students’ parents, but the rest will have to be called. This may be the part of my job I struggle with the most. I do know that from past experience, in other phone situations, disclosing that I am a person who stutters has made it much easier. I can only expect this will be the case.

I have found being open with my students about my stutter has been much easier so far this year. Because a large percentage of these students are on the autism spectrum, everything seems to be out in the open and up for discussion. I love this. On Friday I got stuck saying ‘snack’ and was informed by one of my favorite students that it took me exactly 12 tries to get it out. There was no judgment in this statement and I can only laugh at it.

I also spend a good bit of the day in the general education classrooms working collaboratively. I have a goal to be more of a co-teacher this year and speak up more often. This is a great opportunity to teach a large group of young people about stuttering. I can do this while serving as an example to my own students as well. I hope that they learn the benefits of sharing the aspects of themselves that make them unique.

This is just the beginning of this process. I expect to write another post as a follow-up as the year progresses.

Stuttering Isolationism

Just yesterday I spent over an hour talking with a Canadian friend who also stutters. Even though the call eventually dropped, it was so refreshing to talk to someone who understands blocks and allows time to finish thoughts. Unless you live in a large city, it’s really hard to make connections with other people who stutter. I’ve been fortunate enough to attend a conference, support group meetings and meet people through social media, but not everyone has that kind of privilege. Many live in communities too small to form support groups, or don’t know that such a thing exists. People who stutter often become isolated and feel like they are an island among fluent speakers.

Initially, I was going to organize this post into external and internal factors that can cause this isolation, but I realized that there is so much interplay between these, that it’s almost impossible to decompose them in that way.

Perhaps the biggest factor that causes people who stutter to become isolated is the fact that stuttered speech is so stigmatized. Very early, we are taught that the way we talk is atypical and in need of correction. The therapy we receive in school is often in small private rooms away from the general population. This only compounds the idea that our speech is something to be ashamed of. Many of us learn that the only way to fit in is to do everything we can to hide our stutters. Unfortunately, that means that we are hiding from each other as well. Until a year ago, I was actually afraid to talk to anyone I suspected stuttered, because they might ‘out me’. How can we build community if we don’t even know who we are, or if we’re afraid to show it?!

Another factor that makes us feel alone is that we often feel fluent people don’t understand us. But have we really tried to educated them? Honestly, have you ever asked a fluent loved one or friend to try voluntary stuttering? I’ve even heard that while using delayed auditory feedback helps some of us not stutter, it can cause a fluent person to speak with a stutter. Perhaps things like this could help people understand us better so we didn’t feel so alone.

One thing that has always made me feel isolated was the lack of (or terrible) representation in media. I can count on one hand shows I watched as a kid that had any kind of character who stuttered, let alone realistically. I have no idea how this can be influenced, but it might help to encourage actors who stutter, to do so openly.

The last factor I will mention (this is not a comprehensive list)  is one we sadly do to ourselves. It’s natural to want to associate with others who share your belief systems and philosophies. Unfortunately, this can cause factionalization in a group. Camps such as fluency seekers and those who have fully accepted their stutters can become polarized and critical of each other when, in reality, there’s a lot of grey area between. I know I’m very guilty of this. We probably have much more in common with each other than we acknowledge and could spend more time in that middle ground.

So what can we do to build a stronger community? One place to begin might be to stop providing therapy for young children outside of the classroom. As a teacher of students with other disabilities, we are mandated to provide services in the least restrictive environment. Why can’t students who stutter work with a therapist (at least partially) in the environment where they spend most of their time?

We also need more support groups. Most of the existing groups are in large metropolitan areas, but small cities are perfect places because they can be accessed by more rural areas as well. Once they are established, we can use social media, local papers, and online resources to spread the word. Remember that many people don’t even know these groups exist; they just need to be reached out to.

There are countless other ways as well. Find a way to demand media representation (then tell me what you did). Educate fluent friends and family. Reach out through social media and participate in online conversations. Don’t let the excitement created at conferences die out. Lastly, stutter openly and boldly whenever and wherever you feel you can. How can we find each other if we’re hiding?

While thinking about this post, I decided to create a forum to positively discuss stuttering. I’ve seen a few other forums, but they are often places to share techniques and therapies. Join if you’re interested:

http://stutterplus.freeforums.net/

 

Making Allowances

After last week’s post on authenticity, some really compelling conversation took place on Facebook where an interesting question arose: is being covert about one’s stutter (or even passing as fluent) still being authentic? I honestly can’t decide where I fall on this. I can only draw on my own experiences, but I know at least some of the time I was covert, I had convinced myself that I was doing what I needed to do to get by. I felt that in order to gain college and graduate degrees, friends, a boyfriend/husband and a job I had to have fluent privilege. While I know this to be much more nuanced now, I think I was reacting to messages that had been subtly and sometimes not-so-subtly given to me during my development. When I stuttered as I child, I was treated as inferior in the classroom and teased by my peers. As a teen I found sanctuary in introversion and avoidance. However, when I look back on my covert past, I see it as not being completely ethical or honest. This creates a huge internal conflict: do I even deserve the things/accomplishments I have if they were gained through dishonesty?

In the years leading up to coming out of the covert closet, I had the misguided notions that 1. most stutterers were able to use their techniques successfully and/or 2. all people who stuttered openly were totally self-accepting and at peace. I knew I fell in neither category and felt like both a failure and a fraud. I had no knowledge of the term ‘covert’ in regards to stuttering until about 2 years ago. What a huge relief to finally learn that concept, and that I wasn’t the only one living like that.

With all this reflection, I wonder if perhaps I was being my authentic self during my covert years. But I also think maybe I’ve been putting too much emphasis/value on the word authenticity. Sure I wasn’t really owning up to the identity of being a person who stutters, but I was doing what I thought I needed to do. That said, I don’t want to downplay all the work that’s involved with coming out and becoming open about stuttering. Because that was (and sometimes still is) seriously, really hard! I think for me (and probably others), authenticity seeking replaced fluency seeking and has becomes my new obsession. I fear this is equally ineffective and perhaps dangerous.   

What came up next in the discussion was allowing ourselves to be imperfect. We shouldn’t feel bad for sometimes falling into old covert behaviors. They can be self-protection.  We can simultaneously fully accept and love our stutters but be frustrated with how fatiguing talking can sometimes be. I think we get very comfortable complaining about how others react to or treat us, but we feel like hypocrites if we complain about not being able to get a particular word out. Even in the most accommodating situation it can suck to have a clever quip that doesn’t get delivered just how we wanted.  It doesn’t mean you’ve given up the struggle or you stopped believing that there’s nothing wrong with your voice.

We also need to allow ourselves to enjoy our stutters. It’s easy to say I love my stutter because I’ve found joy in the friendships I’ve made or in the opportunities it’s given me. But why not allow ourselves to enjoy the physical act of stuttering. To say, I kind of like this sensation when my mouth or lips do this thing, or I like the way it sounds when I stutter that way. I want to be able to tell my friends that I love the way they stutter.

I think in short, we should be kinder to ourselves.  Chasing an ideal such as authenticity is not much different than chasing fluency.  We still need to keep moving through our own journeys and our collective journey, but we need to realize we’re only humans and allow ourselves to be just that.

A Search For Authentic Stuttering

Lately I’ve become fond of the phrase ‘out of control stuttering’ but I never miss the irony when I use it. Save for voluntary stuttering, are we ever really in control of our dysfluencies?  If you stutter, you most likely know what I’m talking about: those times when the struggle seems enormous and certain syllables or words require a sisyphean effort vs the times when we might not be stuttering less, but the struggle really isn’t there. From what I understand, this is what we talk about when we say ‘messy’ vs ‘clean’ stuttering.

So, is this just part of the variability of stuttering? Why try to qualify it? For me, I constantly wonder if one of these is a more true representation of my voice. Perhaps because I was covert for so long I don’t feel like I even know what my authentic voice really sounds like.

In preparing to write this post, I reached out to friends on Facebook and asked them to give their thoughts on ‘clean’ vs ‘messy’ stuttering. What do those terms mean? What emotions do they evoke?

Most people seemed to agree that ‘clean’ stuttering consists of light, easy repetitions that lack much struggle and secondaries. It is not necessarily more fluent but may be closer to ‘normal’ speech. It may feel like we have more control over emotional elements. Most of the people who answered had a rather neutral feeling about clean stuttering, while they perhaps agreed it was easier and more acceptable.

Messy stuttering, on the other hand, evoked much more discussion. The definition that developed is that ‘messy’ stuttering involves much more struggle, usually with blocks, tension, and secondaries. “Messy” stuttering sometimes happens when we are excited, emotional, tired or ill, but also when we try to hide our stutters. Occasionally and inexplicably, ‘messy’ stuttering seems to happen out of the blue. Regardless of the cause, we often have negative emotion while or after it occurs.

Rather than shedding light on which is more authentic, these discussions led to more questions. Do many of us seek ‘clean’ stuttering because it’s easier or because it’s more acceptable to fluent people? Is striving for clean stuttering just another form of assimilation? Is ‘messy’ stuttering more spontaneous or is it just a negative consequence of trying not to stutter? Can both of these be our most authentic voice, or are they equally valid way to speak and just situational?

I don’t think these questions can be answered easily and probably not in the same way for everyone. Personally I want to be more at peace (even enjoy) my ‘messy’ stuttering. Perhaps not the times when I’m trying not to stutter, but the times when I’m filled with emotion.  Most likely we all need to learn to be comfortable with both our ‘clean’ and ‘messy’ voices. They each have value and drawbacks. Who wants to be one-sided?
Thanks to Carl, Elizabeth S, Pam, Emma, Ian and Jennifer for your contribution to this discussion. I invite anyone to keep this conversation going either in the comments, or on facebook or twitter.

More Than Just Stuttering Pride

Since I’ve returned from the National Stuttering Association conference I’ve found it much easier to stutter openly. I’ve stuttered openly while ordering food in restaurants and while speaking to strangers about their dogs. I’ve also used the conference as a vehicle to begin talking about stuttering with my friends and colleagues. This is sometimes more difficult than being open with a stranger. I have to say I’ve been completely blown away by the responses I’ve gotten. Every single person with whom I’ve shared, has been overwhelmingly supportive and helpful. I’ve been brought to tears by words from colleagues who I thought found me odd and my heart has exploded when talking to close friends who never felt comfortable broaching this subject.

I don’t really know why this surprises me. The people I choose to surround myself with: artists, musicians, writers, activists, environmentalists– they are all freethinkers. We are a community of nonconformists. So I can’t help but think that one reason these people accept and support me is because stuttering is subversive. It pushes against cultural norms in a fierce way. Stuttering openly and without shame attempts to transform the established social order.

I think back on most of the speech therapy I’ve received. While I may not have hated leaving class to go play games in a closet under the stairs, I definitely received a message that my stutter was bad and something that should be fixed. I felt like a constant failure because I could not seem to apply the techniques I learned to the outside world. I didn’t choose to attend speech therapy, nor was I ever consulted about how it made me feel. My parents had good intentions but they were not informed or given choices. I fear that a lot of young people experience speech therapy this way. There is no way to undo the damage this does to us. Because of my experiences in speech therapy, I felt the need to hide my stutter and live covertly. I realize now that it’s true oppression to expect us to change or hide our stutters for the convenience and comfort of others.  It took way too long to realize this was at odds with everything I believed socially and politically.

One thing that became clear to me at the conference is that people who stutter will talk for hours if they are treated respectfully. I know I’m not the only one who actually became hoarse from talking so much. One word I continually heard used to describe the experience was ‘liberating’. It’s so true! It’s incredibly liberating to talk with others who will sit and listen respectfully no matter how long you block or how many repetitions you have. We prove that this is a possible reality.

 
I want to continue the feelings of liberation and empowerment that I finally felt while at the conference. I want to defiantly finish my sentence even if someone has finished it for me; even if they got it right– or change the words to end it differently just to make a point. I want to allow blocks to go on longer than I have to if I see the person I’m talking to looks annoyed or put out. Or better yet, I want to let blocks or repetitions go on longer because I find them enjoyable. Isn’t true subversion finding power and pleasure in the things society finds defective? Let’s do it.

Reflections on the 2016 National Stuttering Association conference

Early yesterday morning I woke hung-over and exhausted on the 7th floor of the Hyatt Regency hotel in Atlanta, Ga.  I found it nearly impossible to repack my suitcase despite the fact that I had not really acquired much new material substance during my 5 days there.  I decided to go drink the biggest coffee I could find and spend a little time journaling before I made a hasty retreat home–  hopefully free from any tearful goodbyes.

As stepped onto the glass elevator I noticed the lack of purple lanyards and nametags that had come to represent a stranger I could talk to. I no longer could tell who would take the time to hear what I had to say, so instead I looked down into the virtually empty lobby. My hope was to take my coffee and sit in the same chair I’d sat in on the morning when I arrived. I thought it might help me remember my first  apprehensive feelings and begin to process the whirlwind that I’d just experienced. I felt just like my suitcase and I wasn’t sure how to even begin writing with so many thoughts, emotions, ideas and conversations crammed in my brain.

When I had arrived 5 days prior I’d tried not to have any particular expectations. As part of mindfulness, I was trying to just experience without judgment, but I had been given a menu of possible outcomes with terms such as ‘life changing’, ‘overwhelming’, and ‘liberating.’   So I sat in the lobby and waited for my friend Carl to come down from his room– Carl, like so many of the people I was about to meet, was someone I knew through technology, but had never met in person.  I couldn’t help feeling nervous.

Thinking back through each day it’s difficult to even remotely explain the sense of community and common purpose that filled each and every room and meeting place. Despite the variety of ages and nationalities, there was a palpable sense of unity and love, much like an enormous hug.

Now that I’m home and unpacking, I have found tickets for the aquarium and bowling that went unused because it was more important to have spontaneous plans with friends sharing meals, hanging out at bars or just walking around.  I will forever keep close to my heart this collection of conversations and unique voices.   Talking with other people who stutter has now become my favorite thing to do. I had no idea you could spend just 5 days with people and end up loving them as if you’d known them your whole life.

I realize as this is getting longer and longer, that I haven’t even written about the workshops.  There were so many great presenters, but the ones that stand out were not about how to stutter easier or even about our personal stuttering journeys, but about history and solidarity and the next steps. They were about digging deep into your soul and telling your story. They were not mere presentations of material to be stored away, but means to ignite and generate new ideas and actions.  In my heart and mind the conference is not really over. There is so much work to be done.

And that menu of possible outcomes? Yes, It’s all true but so much more.

Vulnerability

I started this blog with the idea of writing about my experiences as a teacher who stutters and someone who is trying to grow comfortable with that set of labels. But since it’s still summer vacation, this first post will be about something slightly different.

Last night I went to see one of my favorite bands play at an outdoor music festival my town holds every year. I always look forward to it and was excited to go with my brother, who happened to be visiting from California, as well as my husband. We walked despite the 98 degree heat and stood in the crowd waiting for the band to begin. It was hot and loud and exciting. In order to talk to my brother and husband I had to speak very loudly. Of course I stuttered, because that’s what I do. I noticed immediately several heads turn to look at me. This happened more than once and made me uncomfortable but I was having a great time, so I chose not to let it get to me.

That is until later, when I was lying sleepless and buzzy in bed. That’s when my mind returned to the experience. At first I assumed the feelings I’d had were shame or self loathing; these are very familiar to me and stem from a childhood of being asked to read out loud in class and getting teased on the playground. But the more I thought, the more that didn’t feel precise. Then I thought maybe I was just angry; perhaps not at myself, but at those people who felt the need to look at me. But I didn’t really feel mad either. What I finally settled on was vulnerable. I’m not sure that’s actually an emotion, but it’s often how I feel when I draw attention to myself by stuttering. I just feel exposed and under examination.

It’s a luxury to have a difference that you can choose to reveal or not, but it becomes a burden as well. If you inadvertently reveal your vulnerability you can get caught off guard and feel a loss of control. And if you are too selective with how much or often you choose to reveal, then you can get caught up in the trap of privilege. There is privilege that comes with keeping your vulnerabilities hidden, then when you are exposed, those privileges get suddenly ripped away. So that’s what I was feeling: that nakedness of losing my veil of privilege.

I don’t know exactly what to do with this new insight. I do know that I want to begin living more transparently and honestly. I want to stop trying to control everything and let go of the need to have privilege. I want to learn to love what makes me unique. So maybe acknowledging that this is what I feel in those situations is the first step in getting there.

Perhaps I’ll write about it further.

This is a great Ted a Talk in vulnerability I came across while reading what others had written: