Writing about my experience with stuttering is a difficult task. It isn't that I find writing inherently difficult, or that I’m uncomfortable with my stutter, but that I am unpracticed in telling a story about stuttering without also telling a story about everything else. Until very recently, stuttering was a thing I kept in my head, a thing I didn't know how to share. It was a thing I never talked about and tried desperately to avoid drawing attention to.

Unlike most stutterers I know, I do not have any experience with speech therapy. I have never been to a speech therapist and I have never had my speech diagnosed. As a child, I was never told that the cause of my speech differences had a name, or that it happened to anyone else. I do know that I began stuttering at a very young age, as even my earliest memories include dysfluency and frustration.

I can recall very clearly an incident in third grade when, after witnessing me navigate an impressive block, a classmate asked the teacher to explain why I spoke so strangely. The teacher looked at me, laughed, and told the student that I had just become too excited, and should slow down when I talk. I remember very little else from that year, but I remember that day perfectly. I remember feeling like I couldn't explain how my mouth felt when I spoke, that even if I found the words, no one would listen long enough to understand. I remember that day as the moment I became an active participant in my own silencing.

Without exposure to other stutterers or to the therapeutic world, I had no context in which to understand my stutter. I knew it was a problem, because it didn't happen to anyone else. I knew I could hide it by avoiding certain words, by answering questions incorrectly on purpose, or pretending not to know the answer. I knew I could hide it even better by not speaking at all. For more than a decade I accepted there was something odd about my speech but I regarded it as just one more thing that made me weird.  

When I was 18 I saw a trailer for The King’s Speech and recognized a piece of myself in the story. I watched it, locked alone in my bedroom in the dark. I was searching for answers, and I thought I had found them. In the span of that film, I went from knowing nothing about stuttering to knowing that I did was called stuttering, and believing that it was caused by being left-handed and by repressed psychological trauma. I spent a lot of time trying to figure out what trauma I was repressing. It took several years for me to learn otherwise, when I met another stutterer and suddenly realized that my experience with speech was part of a larger story.

Which brings me back to the difficulty of writing about stuttering; for so long this has been such an individual concern, a thing I had no way to talk about. It is tricky now, to think back and isolate the influence of speech. How is my experience stuttering different from my experience as a woman? How is it different from my experience as a queer person with atypical gender performance? Or my experience with depression, or chronic illness? Surely, the man on the train who runs his hand up my thigh while telling me to smile is responding to my outward appearance. He knows nothing of my speech, but what about the job candidate I am interviewing? When he interrupts a question, is that because he is confused by my stutter? Is stuttering the reason I hate small talk, or is that just part of my personality?

Stuttering is such a central part of who I am and how I interact with the world. I do wonder if this would be different had I spent my childhood in a therapist’s office, had I been taught to dissect and analyze that part of myself as separate from the rest. The idea of speech therapy, with the goal of reducing or eradicating dysfluency seems absurd to me. Why should I allow someone to make me dislike such an innate part of myself? Those who advocate for speech therapy wouldn't suggest that I try to ‘cure’ my gender or sexuality. They wouldn't imply that I could ‘overcome’ kidney failure if I just tried hard enough, so why stuttering?

Sure, it was frustrating to grow up being so markedly different from my peers. I hate how well I trained myself to stay quiet, how I carried my mouth like a loaded gun. But I also recognize that I was battling larger demons than my stutter back then. I have hated every part of myself for most of my life, and that is not something a speech therapist could have changed. When I began conceptualizing my stutter as a positive facet of my personality, it felt like I was finally being honest with myself. I was finally communicating authentically.

Now, I live in a new city. I have friends who value me for the content of my communication rather than the method, who still laugh at my jokes even when I have to repeat the punch line three times, and who listen to me out of interest and not pity. I have found an artistic community that has helped me grow into an honest writer and a confident performer, and allowed me to compete at the national level. So much has changed, and yet I when I write about my history of silence it is as if I am still living it.

It has been 13 years since third grade, but the image of that teacher laughing is permanently seared into my mind. Even now, when a customer looks at me strangely or a barista chuckles at my garbled order, I hear that laugh. I am reminded of how arrogant that woman was, to dismiss my speech as hurried and make no further effort to understand me. How embarrassed I was, to not be able to control my speech. How obvious it seemed that I didn't belong.

And I also remember my voice, and the visibility I am afforded as a poet. I remember the capacity I have for change. I am proud to be dysfluent and to advocate for the voices silenced for being atypical. I am determined to use my voice and my visibility to become a new kind of stuttering resource.  

-Erin

I am not a conspiracy theorist. I do not own a tin foil hat.

Yet one would hardly need to believe the US government is hiding aliens in Area 51 to notice, mimicking the melodramatic language of politicians, a “war on disability.” Put more soberly, there is an intensive and sustained global effort to irradiate disability from the human population, an effort rooted in the common belief that disability is a tragedy—causing pain, suffering, disadvantage—and the world would be a better place without it.

While society has always discriminated against disabiity to some degree, it is only in the past 150 years that humans have believed themselves capable of removing disability from the human population altogether in the happy march of human progress. The irradiation of disability fits into a larger story, into the history of what is termed “eugenics.” 
     
Eugenics is the attempt to improve the genetic stock of humanity—literally to create better people. Originating in the mid-nineteenth century with Francis Galton, an English scientist responsible for discovering statistical techniques of measuring heritable human abilities and characteristics, eugenics caught on like wildfire across Europe and especially in North America. Galton introduced the idea of statistically “normal” human traits and the idea that the quality of the human race could be improved by promoting the reproduction of “higher” quality people (positive eugenics) while discouraging the reproduction of “lower” quality people (negative eugenics).

Following from Galton’s theory of negative eugenics, institutions were quickly erected to separate those deemed “feeble-minded” from the rest of society. Built upon some very sketchy science, thousands of disabled people (or people diagnosed as disabled) were segregated and sterilized in an attempt to produce a better population, or a better human “stock” throughout Canada and the US. In Alberta, the Canadian province in which I live, 2 800 people were approved by the government between 1928 and 1972 to be sterilized non-consensually and often without their knowledge (I am involved with a major research project called the Living Archives on Eugenics in Western Canada) .  

The logic of eugenics—that the human race should and can be improved—is most infamously associated with the Nazi Final Solution. Yet it is less-well known that the creation of a “pure” Aryan race was first tested on disabled people. By the end of WW2, an estimated 275 000 disabled people had been murdered by the Nazis, many of them severely intellectually disabled or mentally ill.[1] Moreover, it is worth noting that many champions of eugenics in North America praised early Nazi attempts at social hygiene. These events seem chilling from our perspective, yet eliminating "less suitable" kinds of people through eugenics was commonly assumed as necessary to combat poverty, crime, and a host of racist and ableist cultural anxieties.  

After the holocaust, eugenic practices—no surprise—fell out of favor. The racism of the holocaust was denounced, as was the “science” that it relied upon. Yet many institutions for the “feeble-minded” remained open for business, some, like in Alberta, sterilizing disabled people into the 70s. 

How could this happen?

Put in simple terms, the ableism propelling eugenics was never slowed. While no one in the scientific community now suggests that certain racialized groups are inferior and should not exist, the idea that the world would be a better place without disability is rarely questioned. Disabled people are still treated as less-than fully human. Think of the language we commonly use to describe unwanted things: “that’s so lame” “are you blind?” “what a dumb idea” “you’re so insane” (there are many other ableist terms that get thrown around). What is disability in movies but a tragedy, an inspiration, or something to laugh at? How many times have you heard someone exclaim that they would rather die than be blind or in a wheelchair? Disabled lives are still not understood as fully human.   

The ugly eugenics of the 20th century is now being replaced by shiny “newgenic” practices such as pre-natal screening that still attempt to stop disabled people from existing. The methods have changed, but the endgame is the same: a world without disability, weakness, and deviance. In other words, while we decry sterilization and (sometimes) institutionalization as inhumane, eugenic beliefs are only gaining steam. 

It is from this perspective that I worry about the search for a stuttering cure. There was much hubbub about a “stuttering gene” a little while back, a search that would not have been out of place 100 years ago. I have sat across from speech-language pathologists excitedly telling me about the search for a stuttering cure and wondered: what other reason is there to find a cure for stuttering than to eliminate our voices and to remove stuttering from the gene pool and the human condition? 

Being from Alberta and knowing about our shameful eugenic history colours the search for a stuttering cure for me. As well intentioned as it may seem, a “cure” for stuttering cannot be separated from the idea and practise of eugenics that assumes the world would be a better place without disability, without us. We already screen for Down Syndrome since we have decided some lives are more valuable than others. In 20 years might we screen foetuses for stuttering? (I am, by the way, dubious that a stuttering gene will ever be found). What about Speech Easy? Pharmaceuticals? Therapy? While often advertised as helping us “find our voice,” I believe these practices are often eugenic, aimed at normalization. It is just assumed that, given a choice, we would rather talk fluently. We would rather not be disabled.        

I do not believe that the world would be a better place without disability and without stuttering. We have seen shadows of that world and it is foul and dangerous, full of fear and hate. Rather, with disability theorist Rosemarie Garland-Thomson,[2] I believe we need to understand disability as intrinsic to our humanity, something that needs to be “conserved” and encouraged to flourish in the face of eugenic ideas and practises. My desire is for a world where different types of bodies, voices, minds, experiences, and people can exist together, learn from each other, and yes, even love each other. 


-Josh


[1] Braddock, David L. and Susan L Parish, 2001, “An Institutional History of Disability,” in (ed.) Gary L. Albrecht, Katherine D. Seelman, and Michael Bury, Handbook of Disability Studies (Thousand Oaks: Sage), 40.

[2] Garland-Thompson, Rosemarie, 2012, “The Case for Conserving Disability,” Journal of Bioethical Inquiry 9 (3): 339-55.

Ask people who stutter if they are disabled and you will get a wide range of answers: everything from indifference to political solidarity to indignation at being associated with them. The relation between stuttering and disability is not a peripheral issue. Rather, it shapes the nature of the stuttering community as we resist normalization.

In the most obvious sense, stuttering is undeniably a form of disability. Stuttering is a “speech-language pathology” studied by scientific and medical experts. It is even listed in the DSM-5 (the Diagnostic and Statistical Manual of Mental Disorders) for goodness sake. Our bodies are medicalized and treated as disabled.

More importantly, though, stuttering is an obvious disability candidate from the perspective of critical disability studies. In critical disability studies, what makes something a disability is the challenges faced when moving through an ableist world, and it is clear that stutterers are regularly discriminated against because of how we process spoken language.

Yet stuttering is nevertheless positioned in a curious gap between disability and abled-bodiedness. The stutterer is often understood as not quite fully abled or disabled. As I have  argued elsewhere:

Stuttering is seen as something that is ultimately under our control, something that we could “fix” if we just worked hard enough. Put simply, stuttering blurs the line between disabled and able-bodied.

I think there are a few reasons stutterers often avoid identifying as disabled. The first is out of respect for people with “real” disabilities. Because stuttering is sometimes on the limit of what qualifies as disabled, and because we think of disability as a very bad thing, stutterers may not want to compare themselves to those who “have it worse.” Another reason is to avoid the stigma associated with disability. Disabled people are routinely cast as objects of pity and charity, and many stutterers do not want in on that party. And finally, unlike many other forms of disability, stutterers are able to “pass,” or hide their disability. When stutterers successfully pass, they dodge much of the ableism leveled at stuttering, making whether they are disabled a complex question.

I’d like to suggest, though, that distancing ourselves from disability and disabled people has two significant and dangerous effects:

1)      First, as the above quote indicates, no matter how proficient one gets at passing and/or using fluency techniques, playing on the terms of the able-bodied is a treacherous game. We will always be expected to speak by the rules of “normalcy” until normalcy is dismantled. No stutterer can be fluent all the time, and when one fails while passing-as-normal they fail hard. Claiming a disabled identity frees us up to speak on our own terms and by our own rules. I believe this is a far healthier way to live.   

2)      Second, and related, distancing ourselves from disability—saying “I am not like them”—reinforces the ideal of normalcy that affects us all. Put in different terms, all of us—blind, deaf, quadriplegic, epileptic, stuttering, bipolar, intellectually disabled—are oppressed by a shared logic of ableism. We are in this boat together and it is a hazardous mistake to think the oppression of those who are “really disabled” is not related to our own. The flip side to this point is that we need each other. Claiming a disabled identity and joining in solidarity with a larger disability community means that we can draw upon the resources of those who have been fighting discrimination for a very long time. Claiming a disabled identity means we can be part of a resistance against normalcy that is far bigger than stuttering.  

Let me end with a story. Last year I was sitting on the bus when a person who was intellectually disabled (ID) mistook my stutter for me being ID. In the past—in fact, for much of my life—I would have been horrified that others around me would think I was ID and would have quickly distanced myself from being like her. But it is the same ableist attitude that says it’s shameful to be ID that says it is shameful to stutter. So this time, instead of distancing myself, I happily took the ensuing conversation as a moment of kinship and as an opportunity to disrupt the ableism that structures both of our experiences.

-Josh