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On being inconvenient

3/23/2015

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They tell me time is precious.

We have 1 life (not to botch), roughly 3 decades to reproduce (the family structure), 40 hours a week to make money, 24 hours in a day, 16 waking hours.

There’s no time to waste.

In those 16 hours we have to shower, eat, shave, shit, laugh, dress, buy, love, drive, drink, clean, mourn, write, and stress. We have to brownnose our bosses, save for the future, impress our colleagues, grow up, stay youthful, buy a house while interest is low, stay fit, keep in touch, pay off debts, invest, floss our teeth, and watch loved ones die.

So I’m told, life is short.

My response: to stutter whenever and wherever I can.

I like to be inconvenient.

See, the thing about time is that some people are allowed to take up more of it than others. Some people’s time (read: fancy businessmen and other good, privileged capitalists) is worth more than mine. Some people are rewarded for yammering on and lounging in time since their time is what makes the world spin. Disabled people, on the other hand, are taught from an early age to cram ourselves inside time, to take up as little space as possible, to not be a burden.

Part of our oppression as dysfluent speakers comes from being caught in this contradiction: our time is not valuable and yet we continue to www w.-ww-aaaaa—wwwww….  …           to Wwwwwaa.   WWW---waaaaaaste it, spending an extravagant amount of time sputtering consonants and screeching out vowels: far more than we have been allotted. We don’t just stutter away our lives, but (more tragically) the lives of colleagues, families, corporations, and governments.

I take a mischievous delight in being inconvenient.
I steal time that shouldn’t belong to me
from right underneath the businessman’s nose.                          

This doesn’t always work of course. Our ableist world is well-practised at depriving disabled people of time, dignity, and life.       

Yet wherever and whenever possible—precisely when most inconvenient—we must stammer ourselves into the world, in protest and hope that we can reclaim what has always been ours.   

Time was never a commodity--
       It cannot be owned.

It must be squandered
together.


-Josh

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Reflections from a teacher who stutters

3/16/2015

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When I tell people I teach elementary school math, I can't help but notice the surprised looks I get. In general, people are too polite to ask how someone who stutters as much as I do can get up in front of kids and teach anything. Truthfully, I'd love it if someone actually did ask me this question. Foremost, because it has been a lot of work. As I did my Masters in education I felt like I had to constantly prove myself in ways people with average fluency did not. I am proud of my accomplishments and what I do as a teacher, but also I'd like to break down the perception that there are jobs inaccessible to people who stutter or who have other disabilities.

Reflecting back on the past two years as a classroom teacher, I've made a lot of personal growth. When I first started teaching I used a lot of speech tools and techniques that hindered what I wanted to say. I spent more energy on attempting fluency than on actually teaching. With the help of the Did I Stutter Project and a very supportive administration, I no longer view my stutter as an obstacle but as an asset. The only speech tool I use regularly now is advertising. And I prefer to call it advocating. Self advocacy is something I try to instill in all my learners, whether they have a disability or not.  

I can't deny that I face challenges daily. I have difficulty with /s/, /p/, /m/ and /r/ sounds and math vocabulary abounds with them: symmetry, multiply, parallel, remainder, to name just a few. There is no using circumlocution to avoid these as they are crucial words for my students to hear, use, and understand. This doesn't even account for all the other communication that needs to happen throughout the day to ensure an organized, peaceful, and welcoming learning environment. In addition to regular classroom duties I, am responsible for calling parents, speaking up in meetings, and even addressing assembly.

At the beginning of this school year I sat down with my new students and talked about the things that make us unique. I spoke honestly about stuttering and why some people speak this way. I made sure they understood that I'm not uncomfortable and they can always ask me to repeat myself if they don't understand what I've said. We talked about the etiquette of conversation and how you should never finish anyone's sentences for them even if you think it's helpful. I also talked to them about being gay and from New Jersey because these too make me unique. I encourage my students to find the things about themselves that make them unique and to have pride in those things.

As I said before, I truly believe my stutter makes me a better communicator. Because I speak slowly and with a lot of blocks and repetitions, students are able to process what I say more easily. I can't bolt through a long set of instructions for example. I also employ an economy of words. My students aren't used to me talking at length so I think they listen more carefully when I do speak. I believe I have become a much more creative and careful thinker as well, because my mental energy is no longer spent on attempting fluency. Additionally, I've become a better advocate for myself and for my students in terms of accommodations.

My classes are a mix of learners with various needs--from students with identified high incidence disabilities (specific learning disabilities, ADHD and Autism) to those identified as needing enrichment through the gifted and talented program. Some of my students fit in both exceptionalities as well. I am a strong believer in Howard Gardner’s theory of Multiple Intelligences. Rather than lecture, I use hands-on discovery, games, songs (I play guitar and sing math songs at least once a week), kinesthetic movement activities, projects, and practical applications like cooking and building, to deliver and reinforce new concepts. This can take hours of preparation and careful planning, but I think it makes for a much more varied, child-centered learning environment.

Of course I do occasionally have to introduce a new concept in the more traditional ‘teacher in front of the classroom’ model. In these instances I often use videos (I’m a huge fan of Learnzillion), text reading apps, animation apps (Tellagami is my favorite) and other technology to help me effectively communicate in the most efficient way possible. These tools are often referred to as assistive technology: any item, piece of equipment or product that is used to increase, maintain, or improve the functional capabilities of people with disabilities. You'll notice that I don't include AT specifically designed for people who stutter like those that provide delayed auditory feedback, because fluency is not my mission, but rather effective, comfortable communication.

My hope is that when I use AT in the classroom it eliminates any stigma for students who chose to use it as well. Many of my students use Virtual Manipulatives and I have several students who are not strong readers or writers who benefit from such apps as Dragon dictation, Announcify, and Google read/write. As I learn about new tools and apps, I introduce them to all my students as something they might be interested in trying. I have been criticized by some colleagues for this, but I remind them that autocorrect and calculators are types of AT and ask if they are willing to give those up. I offer alternative formats for all exams and presentations as well. Because there is no stigma, I have many non-disabled students who prefer to use AT or alternative exams/presentations because of the novelty.

What makes me the most satisfied as a teacher is not when I find out all my students have passed their standardized tests, but rather when they tell me they love coming to my class. And truthfully, this happens a lot. I think having a teacher who both shows pride in his stuttering and who models the use of assistive technology can only help to confirm that people with disabilities can perform as well or even better than non-disabled people in their jobs.

-Eli



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Medical Solutions for Social Problems

3/9/2015

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Did I Stutter is a disability and stuttering pride community. We want to reclaim our bodies and voices, taking pride in them just as they are. But this statement contains an important question that we have never clearly addressed: exactly what (or who) are we reclaiming our bodies from?

There are probably many ways of answering this question but one in particular seems especially helpful. Taking back our speech means learning to tell liberating stories (or narratives) about stuttering—stories about what stuttering is, how we should “treat” it, and relate to it. The problem is that society is already saturated with competing and ableist narratives about stuttering. Reclaiming our voices thus requires that we learn to tell “counter-narratives” that (1) reject dominant narratives about stuttering that pitch it as disorder and a source of shame, while (2) replacing these with narratives of our own. 

I believe the central narrative supporting our ableist, cultural understanding of stuttering is that when we get right down to it, stuttering is a medical and scientific condition that should be treated as such. This narrative has become so engrained in our thinking that is nearly impossible to question.

What, for example, is stuttering?

According to the dominant medical and scientific story we have all come to accept as (capital-T) Truth, stuttering is simply a communication or neurological developmental disorder or pathology. Researchers and clinicians may not agree on the specifics, but everyone believes that stuttering is at core a medical and scientific condition.   

How does one treat a medical disorder? Through medical means such as rehabilitation; psychiatric treatment; pharmaceuticals; or, in the future, gene therapy.     

I, for one, am absolutely sick of hearing my speech glibly described by medical and scientific experts as a “disorder.” Medical-scientific experts may claim to possess the truth of stuttering, but I don’t recognize their authority over my body and I call on others to reject it as well.

This is all to say that one of our goals at Did I Stutter is to offer a counter-narrative to the medical and scientific story (or what we have in the past referred to as the “medical model”). Our counter-narrative is in many ways extremely simple: the medical model seeks medical solutions for social problems. 

The medical-scientific world loves to “solve” social problems (in fact, many have argued that this is exactly what the modern institution of medicine was developed to do). Nineteenth- and twentieth-century history is rife with examples of medical and scientific institutions and practitioners diagnosing social problems as medical with often terrible consequences. Allow me to outline just a few:

  • An estimated 25% of women in the mid-nineteenth-century with symptoms of nervousness, hallucinations, and “abnormal” sexual appetite were diagnosed with “female hysteria” and subsequently treated in interesting ways. Turns out hysteria was just the medicalization of sexist beliefs about women. 
  • The presumed rise of poverty, criminality, and “moral degeneracy” in the early twentieth century was addressed by diagnosing, institutionalizing, and often sterilizing portions of the population deemed unfit to bear children. Between 1907 to the 1970s,  in the US alone an estimated 60 000 people were sterilized. This blight on our (near global) history is called eugenics and its legacy remains with us today. 
  • Up until 1980 (with the introduction of the DSM-II), homosexuality, or “sexual orientation disturbance” was considered a psychiatric disorder. Turns out society was just homophobic. Against those who would argue that this medicalization was an unfortunate artifact of the past—just “bad science”—it is worth remembering how far we have (not) come. Transgender people are today diagnosed with Gender Identity Disorder (and require this diagnosis for treatment and in many cases legal recognition), and intersex conditions are likewise heavily medicalized with disastrous effects. Finding medical solutions to our social discomfort with gender non-conforming bodies is still big business. 

All of these medicalizations shift attention off the social forces that produce the so-called problem in the first place. Often, the only problem is simply that people believe there is a problem. Medicine and science rush in to ease society’s anxiety with difference not by challenging us to embrace differences that we may not understand, but by labelling ‘different’ as a disorder and thus seeking to eliminate it from our bodies. 

Stuttering is not a medical disorder. Like the other things on this list, and like other forms of disability reclaimed by disability rights movements, what we call stuttering is simply a form of human variation—in this case, a different way of speaking. It is the medical and scientific narrative that has labelled this different way of speaking “abnormal” in order to (1) claim authority over our bodies and (2) calm our anxieties about people who are different.

The social problem of stuttering is the fact that we live in an ableist world uncomfortable with disability/difference. The social problem is that stutterers have been taught to hate and be ashamed of how we speak. The social problem is that people take time to listen to long-winded speakers but not to stutterers. The social problem is that stutterers are denied access to parts of society and are not treated as full citizens simply because our speech is dysfluent.

Seeking a medical solution for these social problems is not just an epic adventure in missing the point. Rather, scientists and SLPs who try to fix the social problem with medical tools are reinforcing the harmful narrative that our bodies have a disorder and thereby make it harder for us to take ownership of our speech.

Better evidence-based research, larger sample sizes, or advancements in neurophysiology and genetics will never liberate us from our oppression as stutterers. The problem is not that the science or clinical practices aren’t yet good enough. The problem is that stuttering has never been a medical and scientific problem.

It’s like trying to put out a fire with gasoline.

Medical-scientific practitioners need to realize that for better or worse, they become complicit in our oppression through the narratives they perpetuate.

“Disorder.”

“Treatment.”

“Risk.”

However, we all need to stop parroting stories that treat stuttering as something medical and scientific. And most importantly, we as a community need to learn to tell new stories that can imagine stuttering differently. My stutter has never been a disorder—it cannot be diagnosed or fixed. My stutter is how I talk. My stutter is the particular rhythms of my voice: unpredictable, dramatic, emphatic, unique. Stuttering our own stories about our voices is how they will be reclaimed. 

-Josh


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