​​A change is clearly underway. Three years ago one would be hard pressed to find any critical literature on disability and stuttering. Today, however, more and more discussions can be found exploring stuttering as an oppressed form of communication and questioning the impulse to normalize it through rehabilitative medicine. As such articles continue to come out, we thought it could be helpful to write short and accessible reviews both to let people know what is happening and to lend a critical lens to the discussion. 

Today, I would like to talk about a recent article published by the International Journal of Speech-Language Pathology titled “To be or not to be: Stuttering and the human costs of being ‘un-disabled’.” The essay is written by Brian Paul Watermeyer (PhD), a clinical psychologist at the Department of Health and Rehabilitation Sciences at Cape Town University, and Harsha Kathard (D.Ed), an SLP professor at Cape Town University. 

The central argument of this paper is that there is a psychological cost in striving for normalcy, and that SLPs are often complicit in creating the desire to be normal within stutterers. As Watermeyer and Kathard write, “[W]e hope that these reflections may contribute to deepening reflection among rehabilitation professionals of how our work may harmonize unhelpfully with cultural imperatives towards normalcy” (p. 8). This is a bold and important question, and I hope that it continues to be asked. 

Watermeyer and Kathard explicitly offer few answers. Rather, their hope in this piece is to open up space for future research. One of the questions they return to often is why, given that many other disabilities have been claimed as a positive part of one’s identity, is it seemingly so hard to think of stuttering as a “legitimate way of being and communicating” (p. 6)? Why is it that “the idea of making space for stuttering as a legitimate human difference—like some other impairments—feels incongruous?” (p. 6) Again, this is an excellent question meant to break down obstacles to (what we would refer to as) stuttering pride.  

However, one of the peculiar things about this paper is that while explicitly written from the perspective of disability studies, it doesn’t draw very deeply upon the resources offered by the field. Besides a couple one-off references to Garland-Thomson (1997, 2009) and Davis (1996), Watermeyer and Kathard draw almost exclusively upon Watermeyer’s previous publications. This of course wouldn’t be a problem if there was a lack of relevant literature to work with and if Watermeyer offered the best theory with which to think critically about stuttering. Yet I am not convinced that this is the case. I suggest the result is that Watermeyer and Kathard 1) have difficulty drawing generative conclusions and 2) are at times forced to create problems and distinctions that don’t actually exist. 

For example, Watermeyer and Kathard argue that most disabilities can be incorporated as a positive aspect of identity because “all ‘selves’ are both normal and not, both frail and robust and subject to both hope and despair” (p. 6). Yet Watermeyer and Kathard continue by setting stuttering in a separate category: “In contrast, data on stuttering suggest a picture of discrete, competing selves jostling for prominence. Here, to stutter is to fail in the quest to embody the ‘normal’ part of the inner split” (p. 6). This is a rather arbitrary and unhelpful distinction for a host of reasons. The first one that comes to mind is that Watermeyer and Kathard tend to treat identity as a free-floating thing in the social sphere. Rather than drawing conclusions about stuttering from generalized notions of identity, we need to investigate the (historical) process of how specific arrangements of identity and subjectivity are formed around the experience of stuttering. Of course the experience of stuttering is both similar and different from other forms of disability. Yet this in itself means very little. 

The larger problem, however, is that these are not primarily academic issues. If true that it is more difficult for society in general to think of stuttering as a “legitimate way of being and communicating” (p. 6) than using a wheelchair, for example, this is only because activists in the disability rights movement have been working tirelessly for 40 years to change ableist perceptions and institutions/structures around what it means to use/require a wheelchair. Stuttering, on the other hand, does not have this history. This is an activist and social issue, not an inherent problem with “stuttering identity.”    

In conclusion, and on a related note, it is telling the way in which this article ends. Following their excellent call for greater reflection on how SLP practices may be complicit with cultural imperatives towards normalcy, Watermeyer and Kathard write: “Integrating this awareness into new theoretical approaches may create a more humanitarian balance between the drive to correct and the path towards societies more able to manage difference” (p. 8). I find it very telling that the outcome of reflecting on our culture’s drive toward normalcy is summed up in words like “balance” and “manage difference.” Understanding disability/stuttering justice as a “balance” or middle ground  between assimilating difference and making space for it will always be the problem of working within the system, of trying to produce change from within the medical-industrial complex. Similarly, difference is not described as something to embrace, celebrate, or radically include, but as something (a challenge or problem) for a bureaucracy to “manage.” Managing difference is not how a more just world is created. In this context, it is hard to take seriously their concluding belief that “social change in disability is not the sole responsibility of health professions, but our influence in shaping disability culture is beyond question” (p. 8). 

Excuse us, but we are not done with the questions.

-Josh

One of the purposes of Did I Stutter is to shake up ideas that we take as common sense. To use a different metaphor, over time, ideas and practices that we regularly use become packed like a well-worn path. We intend to dig up and question seemingly obvious facts about stuttering, to make the trail cumbersome so we have to pick our way with more attention and perhaps find a more exciting and inviting trail that does not beeline for pathologization and rehabilitation. To be more precise, we want to show that what seems obvious may not be so obvious after all.

The taken-for-granted idea I want to explore today is that stuttering is something that can and should be measured. How do we know if a person stutters? How do we know what treatment to prescribe? How do we gauge the success of a treatment? Well, first and foremost by measuring and categorizing dysfluent speech. This is run-of-the-mill stuff for SLPs. But when we stop and think about it, measuring stuttering is an odd and fairly recent practice that reveals a lot about our assumptions of what speech, communication, and disability are.

Like many, I have gone to speech therapy and twitched as the SLP tapped out my syllables and dysfluencies on her counter. The tap quickly became background noise and forgotten: a regular part of therapy. Yet if counting stuttering has become natural for stutterers, it is far more so for SLPs. In fact, I will argue that measuring disabled speech is a central foundation of SLP as a discipline and industry.         

What we now understand as SLP only emerged as a discipline at the beginning of the 20th century. While rhetoricians have been teaching proper elocution since Ancient Greece, and medicine—including an attention to speech “defects”—flourished during the Enlightenment, it was not until the 1920s that professional “speech correctionists” from backgrounds of education, medicine, and elocution came together to form various special interests groups such as the American Academy of Speech Correction (AASC), which eventually became the American Speech-Language-Hearing Association (Duchan 2012). From a historical perspective this timeline is fairly unsurprising. Many other social sciences, such as psychology and anthropology, were established within this period, a period defined by the rise of what is called “logical positivism.”

Positivism is the belief that for a claim to be meaningful it must be demonstrable (and verifiable) through evidence. If it can’t be measured and demonstrated, it is neither true nor false, but is rather meaningless or gibberish. Needless to say, positivism shaped the entire field of Western science. Einarsdottir and Ingham (2005) point out that “from a scientific point of view, it is necessary that the measurement, and therefore the diagnosis, of a disorder should have consistency if research on that disorder is to have progress” (260). Positivism fits fairly easily with “hard” sciences like chemistry and physics which were already firmly based in experimentation, observation, and evidence. However, how do you measure messy things like the human mind (psychology), culture (anthropology), or speech (linguistics / SLP) in a way that positivists will accept as credible? Social sciences have often responded (especially in the heyday of positivism) by contorting human activities such as emotion, politics, and communication into quantifiable data that does great violence to their complex nature. Despite or perhaps because of this effort, social or “soft” sciences have continually struggled to be recognized as “real” sciences.   

The immediate problem for SLP was thus proving that what they do is scientific—i.e. credible and legitimate. Charles Van Riper hints at the early worry about the field: “Back then we had no texts, no tools. We recorded our clients’ speech on wax phonograph cylinders. Our sound waves were scratched on a smoked kymograph drum. Using tuning forks of different frequencies, we calibrated hearing loss by marks on the office carpet. We had no standardized tests.” (Van Riper, 1989, pp. 72-73; quoted in Duchan 2012). One of the first tasks of the AACS was accordingly to find a scientific grounding for speech correction: a means of quantifying disabled speech such that results can be verified and taken seriously within medical scientific communities.

Wendell Johnson was more or less the first SLP to come up with a standardized and widely recognized system of measuring stuttering—or, as SLPs call it, a “disfluency typology.” In the late 50s, Johnson devised a measurement system that used eight categories of stuttering (interjections, sound and syllable repetitions, word repetitions, phrase repetitions, incomplete phrases, broken words, and prolonged sounds). By measuring any sort of speech he was of course making a statement about what speech is: a phenomenon that can be reduced to its linguistic structure, set of phonemes, and accompanying motor functions. Other less measurable ways of understanding communication were thereby set aside as outcomes of, or incidental to, the demonstrable facts of syllable counts. Since then, the categories have shifted slightly—the more general metric “SLD” or “stuttering like disfluencies” is often used today (Einarsdottir and Ingham 2005, 262)—but the idea and practice of using syllable counters, syllable count sheets, and word count sheets to quantify, standardize, and understand stuttering behaviors has changed very little. Finding the best way to measure stuttering is an intensely debated topic within SLP, yet almost all within the field agree that it must be done (and in fact only argue so intensely about how to do it because they see it as a matter of such great importance). The Lidcombe program is an excellent example of the compulsion to quantify stuttering today, as the program goes so far as to export these practices into the home and the family—Lidcombe explicitly relies on parents measuring and charting the dysfluencies of their child.

My first point is this: the idea that stuttering is something that can be measured and represented on a count sheet is not a simple and obvious fact, but must be understood in its historical context as a way of thinking closely connected to the legitimacy of SLP as a scientific discipline. SLPs are often quick to point out that theirs, in unmistakably positivist terms, is an “evidence based practice.” While many individual SLPs do strain against the positivist roots of their discipline, for better or for worse the discipline itself is still married to the (elusive) goal of measuring stuttering, which presents real limits on the possibility of individual SLPs deviating from this method.

However, while SLPs are of course measuring something in their typological practices (motor functioning or deviations from linguistic structures), I do not think they are actually representing a deep fact about the reality of stuttering and speech production when they count out syllables and measure dysfluencies. We are of course supposed to believe that dysfluency counts are describing something scientific, objective, and therefore deeply true about the reality of my body when they quantify my speech (e.g. that I have “a stutter,” and this is a pathological medical condition). But I reject the positivist project upon which SLP is built (note that rejecting positivism is not the same as rejecting science). I believe that when these sorts of claims are made what is really happening is a circular confirmation of what has already been assumed as true. SLP starts with the assumption that stuttering is a medical and biological pathology that can therefore be measured, and then proceeds to prove this by measuring and quantifying stuttering. This is a strong but certainly not maverick claim to make on my part. Many others have staunchly resisted the positivist conquest of human affairs: the discipline of political science is a fascinating example. Even closer to home groups like Deaf pride, the anti-psychiatry movement and c/s/x, and queer activists remain highly skeptical of modern psychiatry/medicine’s discourse around and definition of their bodies and minds (cf. Price 2011). Note, I am not saying SLP isn’t a science nor an evidence based practice. Rather, the point is that “scientific” does not mean objective nor a description of how things “really are.”

I might accordingly ask: what is SLP as a discipline really accomplishing by grounding itself in measuring and quantifying dysfluent speech? SLP (a) gets to call itself a science with the rest of them and (b) is able to use this credibility (and the ensuing funding) to pathologize and treat our bodies. Again, this has very little to do with the intentions of individual SLPs who for the most part are simply wanting to help stutterers. The issue is that there is always something happening that exceeds individual intentions.

Picking up on (b), my second point is this: measuring stuttering is deeply connected to capitalism. We have argued before--here and here—that whatever else it is, SLP, along with all rehabilitative medicine, is also an industry that makes money by pathologizing and subsequently treating our bodies. Understanding the historical relation between SLP, positivism, and scientific legitimacy, we can be a little more specific about the capitalist aspect of SLP. We must consider (i) that scientific credibility enables the capitalization of rehabilitative fields like SLP. Nikolas Rose (2007) argues that as medicine was intensely capitalized in the latter half of the 20th century, “clinical practice was reshaped by the requirements of medical insurance, and criteria for reimbursement. Basic and applied biological research – in biotech companies and in universities – become bound up with the generation of intellectual property and shareholder value” (4-5). In this way, syllable sheets providing hard data are an economic tool by which SLPs get reimbursed by third-party payers for services rendered. The need to provide quantifiable outcomes to third parties continues to be a source of frustration for some SLPs who wish to provide more holistic therapy. The measurement of stuttering is thus not simply a diagnostic tool for prescribing (and reviewing) appropriate treatment, but is a type of guarantor that legitimizes and sanctions the “exploitation” of disabled speakers—the idea that their bodies must be normalized through (often costly) therapy to have value in society. Scientific credibility greases the wheels of the medical-industrial complex.   

(ii) I believe it is also important to consider that measurement and quantification are central to capitalism itself. Capitalism works by maximizing profit margins: wringing the most value out of its workers and continually expanding its markets. Capitalism increasingly measures work to make production more efficient. Nike, for example, has the time it takes to produce the various parts of a shoe down to the hundredth of a second. On the other end of the process, companies quantify markets to increase profitability. Coca-Cola sets targets according to “Total Liquid Intake”: quantifying and then increasing their share of how much liquid humans ingest in a day worldwide. Insofar as speech and communication are increasingly central to capitalist production, quantifying speech and attempting to maximize communicative efficiency through SLP are every bit a capitalist project regardless of (and even in spite of) the intentions of individual SLPs.        

In conclusion, I would like to suggest that quantifying and measuring speech (or treating it as something that can be quantified at all) should perhaps be rethought. Speech is not a string of sounds. Communication is not the exchange of meanings ferried between two brains by phonemes. Similarly, dysfluencies—no matter how meticulously counted—do not disrupt my ability to be with another through speech in a measurable and reductive way. Spoken communication is a rich, affective, aesthetic, intersubjective, and dynamic process. To contort it into a string of sounds that can be measured, dissected, and then labelled as dysfluent and pathological is a violence not only against my body but against the very nature of speech. My stutter is too wily to be reduced to a syllable count. It refuses to be caged. I refuse to make it an assembly line.    


-Josh

As we’ve critiqued many of the ableist assumptions of Speech-Language Pathology, we've received reminders that “not all SLPs are like that.” We recognize that there are individual SLPs who work hard to resist many parts of the system from within. We are extremely grateful for this work, and recognize just how important it is to those of us who receive it.

However, when you read our critiques of SLP, you’ll notice that the majority of what we’ve discussed has been focused much less on the role of individual pathologists, and much more on the discipline, teachings, and premises of Speech-Language Pathology as a whole.

This is because while it’s true that not all SLPs do all of the things that DIS has critiqued, the much more important point is that every person who stutters still experiences the harmful effects of SLP as a whole. Our society has taken the discipline and industry of SLP as the default way of understanding and responding to stuttering, and the things it says about stuttering affect every single one of us, whether we’ve ever set foot in a SLP’s office or not.

Every day I encounter the assumption that my stutter is a problem to be treated and coped with. This assumption is reinforced by the practices, research, and very existence of the SLP industry. In diagnosing stuttering as a medical condition and looking for ways to treat and rehabilitate stutterers, SLP is creating and reinforcing the backdrop of discrimination (and assimilation) against which I live every day of my life.

Of course the vast majority of us who have been to speech therapy have experience this outright—the assumption that it is my speech (not the biases of my listeners) which causes my difficulty in communicating. The assumption that the underlying social struggles I face (anxiety, fear, shyness, low self-esteem) are best addressed by modifying me or my speech rather than ableism within society.

Moreover, these exact opinions are replicated by society as a whole. For one thing, everyone constantly assumes that if I’m not receiving speech therapy I should be. For another, everyone thinks of my stutter as a struggle to overcome—a deficiency to be disliked and minimized. These biases against my speech are backed up and made credible by SLP.

At Did I Stutter, we are instead claiming that there is quite literally nothing wrong with stuttering. We want to be proud of our stutters. We want completely to undo the assumptions we hear every day that there is something unfortunate or deficient about our speech and that our voices would be better off modified or changed. We want to go to schools and workplaces where those around us don’t wish we were fluent and don’t expect us to wish it too. We want to understand the “impediments” in our speech as having nothing to do with our physical bodies and everything to do with a society that doesn’t accommodate our voices just as they are. For better or worse, these goals stand in opposition to Speech-Language Pathology.

It is for this reason that Did I Stutter has been careful to position itself outside the field and logic of SLP. In doing so we aren’t critiquing the intentions of individual SLPs, who are by and large in the field to help people. Rather, we are resisting the industry’s entire assumption that disability should be responded to in therapeutic ways. Like many other liberation movements, we want to make room for people with speech impediments to define their voices for themselves without needing to defer to “experts.” We also recognize that SLPs face an unfortunate conflict of interest as it does not economically benefit SLPs or the industry as a whole for stutterers to embrace their voices just as they are and stop seeking therapeutic intervention. This is part of why we are grateful for the work of those SLPs who do resist the ableism of the larger industry, yet part of why we know that resistance from inside an ableist system will never be enough.

It may be true that not all speech-language pathologists reinforce the ableism of Speech-Language Pathology.

But yes, all stutterers are damaged by it. 

-Josh and Charis

“If my stutter was the most truthful and sincere part of me then what did it mean to try and change that voice?”

Stutterer and author Katherine Preston asks this intriguing question in her Huffington Post article citing Honest Speech. How do we discuss the concept of authentic voice in respect to the myriad reasons individuals choose to change the way they speak?

It is necessary to first differentiate between alterations related to identity and those related to assimilation, although the two are often intertwined.  

When we talk about stutterers in speech therapy, we are primarily talking about assimilation. This type of therapy is founded in speech pathology, which labels disabled speech as inferior, ineffective, and impeded. Individuals who pursue therapy are influenced by the socially constructed standard of fluency, and they seek to reconcile the difference in their speech. Commonly, the decision to enter therapy is made not by the individual but by parents and educators who mark dysfluent speech as different and attempt to realign it.   

Individuals who enter therapy for reasons related to identity are commonly not stutterers. Preston gives many examples of identity-affirming therapy, including trans* and non-binary individuals. In this case, aspects of a person’s speech are misaligned with their identity and they make the choice to pursue change. They seek therapy not to sound like everyone else, but to sound more like themselves.

Assimilation and identity can be conflated in many cases. The litigator who entered therapy to deepen her voice did so because a high-pitched voice was viewed as incongruent with her identity as a litigator. However, the perception of femininity as ineffective in the courtroom stems from the social construction of maleness as an unmarked trait. And the choice to align a person’s voice with their gender identity is influenced by the social construction of male and female speech traits.

Did I Stutter is not inherently opposed to speech therapy. Our intention is not to shame or judge individuals who pursue therapy for any reason but instead to illustrate the implicit and explicit forces that drive stutterers into speech therapy. The point is to empower dysfluent voices, and to advocate for stutterers to be treated with respect regardless of their choices about therapy. The point is to allow stuttering youth access to proud dysfluent role models and to affirm consent and bodily autonomy at all ages.

-Erin

A response to the critique of speech therapy has been to admonish those of us at Did I Stutter and to remind others that speech therapists simply do pain reduction.

This is not a response to our argument.

The problem with speech assimilation is that it does not position itself as pain or harm reduction. Speech therapy positions itself as being about achieving so-called developmental goals and in doing so, implies that people who lack verbal speech or ease of verbal speech are not as worthwhile human beings.

If speech therapy was only about pain, it would not consider dysfluency itself to be a problem, but would only concern itself with external side effects.

We know too well that speech assimilation is sold to stutterers as a path to citizenship and civility.

That path comes through a relationship of subordination.

To be dysfluent is to need reform, to require professional help, and to require services.

Such services do not come freely available as techniques that can be easily shared or known about, but require submission to educational or therapeutic institutions that are reliant on funding.

Often, through wide-ranged systematic shaming of stutterers, parents of dysfluent people are urged to participate in a cure for dysfluency both financially and through directed action in their relationships.

Speech therapy and its ideology of speech assimilation is an ideology of submission by disabled people and their families to professional-controlled speech norms that can only be gained through giving up money and authority over the body.

Stuttering exemplifies beauty, even if that beauty is unrecognized. The staccato play of syllables, slowed down repeated reaction, even perhaps onomatopoeic repetitions, indicating the staying power of a specific topic or speaking to an unrevealed intensity inherent to experience.

The intention of quieting the stutter, of organizing or trapping it is to capture a way that bodies move. For individuals who make their living from speech therapy, the shame of stuttering secures their work. The perceived authority of medical charts over differing cultural experiences ensures that the speech therapist always has work. It is not that all treatments or elements of speech therapy are detrimental, but rather that the discipline frames differing speech as undeveloped speech: the production of speech difference is rendered a speech problem that requires intervention. As long as dysfluency is produced as a pathology, speech therapists will always speak as superiors to their clients, they will always reentrench a notion of the speech difference as a deficiency of body and sometimes of motivation. If there is a value in breathing, in controlling the body or in self-regulation, such ideas can be shared among dysfluent people instead of from a position of authority. The refusal of speech pathology for dysfluent people is a refusal of lifelong subordination.


-Zach

This website a breath of fresh air. People who are viewed primarily as patients or potential patients are protesting publicly here. Yes! I already knew you were protesting in private. I know, because I protest too. In 2009, I got a masters in speech-language pathology. But before I started my first job, I had a huge bike wreck that sent me to cognitive rehab. To this day, I've been introduced at events as a "TBI patient," though my last rehab session was over three years ago. My protest boils beneath the surface: I am a person, not a patient.

That's why I support your protest, even against speech therapy. I've heard researchers talk about the utter tragedy of the child who doesn't learn to curb stuttering. The tragedy is the child won't communicate like a "normal" person.

I know that's only one camp of stuttering therapy, but it's not as radical as its detractors might think. What about the original speech therapy work? Practice your R until it sounds like my R, make your lisp go away. Why? So you'll be more socially acceptable. Unless we ask the world's listeners to be more accepting of non-Rish Rs and lisps, we're saying the problem lies solely in the individual. That's the ableist rationale historically underlying speech therapy.

Even Charles Van Riper's deeply personal speech therapy techniques included learning to sound more like the status quo. His work was born of lifelong shame about his speech, which makes it wonderfully insider. But to isolate the stutterer in a clinic room to fix his problem puts all the responsibility on the stutterer. Where was the scrutiny of society for shaming Van Riper? Where was the clinic room that taught family, friends, teachers, and employers to not be annoyed or entertained by stuttering? A patient needs to fix their way of being, and everyone else can chill out and wait for the patient to come around? Ableist.

The field has progressed since then. Some speech therapists work in a way that holds patients as valuable and valued people as they are. But the legacy of the field's roots don't go away. So here are my own protests.

I am not a stutterer. Thanks to some traumatic brain injuries, I know a physical experience and sudden terror of being trapped in a block or repetition. I've never faced the insistence that I should be ashamed because my neurogenic stutter lasted a few months in 1999 and has come back only intermittently with subsequent hits to the head.

I have other impairments. Similarly to stutterers, folks with brain injury receive public praise when we bust our asses and get better in rehab (though level of ass-busting is not correlated to level of betterment; not that I can convince the public or most providers of that). Also, we're considered self-centered and missing the point if we refuse rehab.

I refused some rehab because it was aimed at my assimilation back into normalcy. Why speech therapists hold normalcy as an ultimate goal for people with impairments, I'll never understand. My rehab wasn't aimed at helping society flex their standards so I could coexist and be given opportunities despite my odd communication and behaviors. It was all me and my problem. So I dropped out.

I know nowadays some brain injury rehab focuses on community re-integration and training communication partners. But that's not what I was given. I was handed to a speech therapist who paid no attention to my emotional experience of being in her clinic room or what I actually wanted her assistance with. The clinician determined what she felt I was bad at and set to work fixing me. Literally screaming and sobbing did nothing to get her to pay attention to my rehab goals. I know because I read my chart notes after I left. She didn't document my protests, and she downplayed my impairments, even the ones she was trying to cure. Classic. Disabled people are unreliable reporters of their own needs simply because they are disabled. Best to just leave it to the experts.

Rewind to grad school. I was training to become an expert. I worked with a teenager who had been taught by a speech therapy student before me to say "Sorry, but sometimes I stutter" by way of introduction. That grad student had told me privately that she felt sorry for this client because of her speech. No wonder she trained the teen to apologize for her own presence and desire to communicate! Gross. In our time together, the teen and I worked on acceptance and pride, raising her awareness of speech production, some fluency shaping, and reflecting on maybe not apologizing. I kind of hated having to undo the prior speech therapy student's shaming. I wondered how often this would come up once I graduated and became an SLP.

So when I became a patient after I graduated and had to live on the other side of the clinician-patient relationship, I left the field. I cannot be in that dynamic with someone else. I cannot draw a paycheck from reinforcing the idea that “you communicate abnormally and should communicate more like I do so that you'll be a valuable person.” Despite the great work of some progressive researchers and clinicians, many are still more concerned with changing patients so that others are more comfortable around them than really uplifting people. 

Anyone who truly values stutterers and people with brain injury must learn to temper their defensiveness when we step up and say no. To call speech therapy ableist is not an attack on individual speech therapists' value as people. Rather, we protest the insistence that only certain people must fix, cure, or correct an aspect of themselves in order to be appreciated as full members of society. In the relationship between client and clinician, the clinician has more power. Speech therapists, please don't be hurt when the person with less power wants to voice their reality and assert their humanity. After all, isn't that why people want to become speech therapists? I thought that was why I joined the field, but I could not make it work. So, I join the public protest in solidarity.

-Cheryl

I, like many stutterers, have spent a long time feeling embarrassed of how I talk and who I am, and feeling guilty for making people uncomfortable. I lived in constant fear of my tongue which might at any moment derail—producing a tortuously slow trainwreck of gapes and grimaces, dragging behind them embarrassed glances always ending in shame. 

For this fear I spent half an hour every morning rehearsing fluency at 60 SPM: “wheeen the suuunliiight striikes raaindrops iiin the aaAir . . .” I was determined not to let stuttering hold me back – “I CAN ACHIEVE ANYtt-----ttTHING WITH PERSISTANCE!” Yet perhaps it would be better to say that I simply feared my mouth once again swelling shut with shame.

My speech pathologists taught me self-acceptance. Self-love. They told me it didn’t matter what other people thought of me. I should just ignore them. “They’re ignorant,” I was told. Sunday School taught me to forgive those who mocked me. Let it go—they’re not worth your time.

The one thing I was never told that was that I could get angry. Fucking angry.

Fury is a proper response to injustice and oppression, to silencing, stereotyping, and co-option. All emancipatory movements of the twentieth century—civil rights, disability rights, feminism, and queer liberation—have been fueled by anger focused into resistance. As the legendary Audre Lorde writes, “Anger is an appropriate reaction to racist attitudes, as is fury when the actions arising from those attitudes do not change.” [1] For so long, disabled people have been treated as objects of charity and welfare, expected to accept the scraps society doles out with a thankful tear in our eye. In contrast, the disability rights movement teaches us to “piss on pity” and be outraged at our exclusion and marginalization.   

So where the hell is the fury in the stuttering community? We are jesters in music and film. People mock, stop, and dismiss our words. We are inspirational when we overcome our “tragedy” and lazy when we do not. We are regularly not treated as equal citizens, denied time, jobs, and respect. I should be livid when your discomfort makes me hate myself. When you tell me to sit down halfway through my class presentation. When you don’t absorb anything I’ve said because you’re too busy feeling sorry for me. When you medicalize my body and claim to be the expert on my speech. I should be outraged at everyone who helps, in a million little ways, to create and sustain a world that oppresses dysfluent speakers.         

Yet for all of this the stutterer is trained (with stickers and (social) gold stars!) to be mild-mannered and submissive—to accept ourselves. Does no one find this absurd? This is domestication, not liberation! We as a community are far too easily satisfied. Oh, it’s certainly permissible if I occasionally get angry at myself, if it leads me to work harder and persevere. But direct that anger towards the world? Ruffle some feathers? Dare to make our frustration political? All of a sudden we are stuttering out of line. All of a sudden we are unruly, dangerous.

(We will not, by the way, be towed back in line through claims that we’re just playing the victim card or being lazy. In every movement, these have always been cowardly responses used to maintain the status quo.)     

Here’s what anger does. It focuses us. It enlivens us. But most of all, it centers attention where it needs to be: on the injustice of the stuttering experience. My tongue is not the problem. My tongue has never been the problem. Getting angry lets me remember this.

Anger is a rallying cry. In the fight for gender equality, anger remains a driving force behind suffrage, workplace equality, and bodily autonomy. In the civil rights movement, anger fueled leaders from Martin Luther King, Jr., to Malcolm X, to Audre Lorde in rallying the multitude and making sure they will no longer be ignored. Anger continues to be a life-giving force in the face of marginalization, as, for example, recent events in Ferguson have shown.

In the disability rights movement, anger forces those who are “abnormal” and subhumanized to be confronted, at least for an instant, as persons. When those who are institutionalized without their consent, medicated against their wishes, isolated, ignored, diagnosed, stigmatized, rehabilitated, sterilized, denied education, criminalized, and left in poverty with no escape beyond the bureaucratic welfare and intermittent charity of those caregivers and systems disabled people too often find themselves utterly dependant on, anger is a lifeline in demanding that injustice be recognized and that oppressed peoples be heard on their own terms. Anger is a bastion for communities who refuse to simply smile and be grateful. Anger fuels change. 

Anger can be this for stutterers.

It’s time to take back our speech.

-Josh

[1] “The Uses of Anger: Women Responding to Racism”

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.