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

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

In the discussions that we at Did I Stutter have had with many in the Speech Language Pathology world, there is often a fundamental misunderstanding. One could almost say that we are operating with an entirely different paradigm.

To help clear up some of the confusion, we would like to introduce the distinction between what is called the “medical model” and the “social” or “cultural model” in the disability studies world. A medical model represents an attitude toward difference in which any type of biological deviation from what is expected (and understood as “normal”) becomes a form of pathology or deficiency. The medical model treats disability as a deficiency existing at the level of an individual person. Managing disability within the medical model is thus achieved almost entirely by seeking cures or rehabilitation within the individual body and person. 

 Speech pathologists and those within the medical model view stuttering and other dysfluencies as the main difference between the lives of “normal” speakers and those who cannot pass as normal. The medical paradigm views difference as disorder, often affirming a view of life that starts with birth, climaxes at marriage and ends in death. In such a view, stuttering is disruptive because it hinders attempts at normalized socialization and economic productivity. Stutterers are less than ideal citizens.

We at Did I Stutter subscribe to what is called a cultural model of speech. We view differences in speech not as causes of problems, but as a sign of unusual embodiment that, when identified by society, leads to the devaluation of the speech disabled individual. The cultural model argues that bodies are tremendously varied, but only some forms of variation are marked as abnormal and deficient (for example, red hair is a genetic mutation, but no one talks about the “risk” of having a red haired child in the way that we routinely talk about the “risk” of having a child with Down syndrome). The cultural model of disability refuses to assume that any bodily variation—be it hair color or disability—is somehow naturally deficient or bad. Rather, it is primarily social and cultural barriers discriminating against disabled bodies in a thousand ways that turn the ‘difference’ of disability into a deficiency.

 Of course, experiencing disability produces challenges that other bodies may not have—we often have physical pain, and our bodies can move (or not move) in ways that can at times be frustrating. The cultural model of disability does not deny this. However, it also believes that pain and frustration are in part shaped by a world which is designed for certain sorts of bodies while failing to accommodate others. The point is that disability is never an individual issue, but must always be understood in a social context. The medical and individual model of disability is far too simplistic to understand everything that disability is.

 A cultural view of stuttering might think that social attitudes toward deviance and appearance weigh heavier in the treatment of stutterers than the sound of the voice itself. A cultural view might be curious to look at the treatment of dysfluent individuals in non-western cultures, wondering if the stigma attributed to stutterers is associated with an idealistic attitude held toward efficiency. Finally, a cultural view of speech might encourage individuals to think about how they learn to speak and what “good speech” even means. Furthermore, it would contend that our learning about “good speech” has a heavy influence on our experience; if an individual experiences pain when they stammer, that pain is inseparable from the faces made by our conversation partners and the way their reactions condition our thinking about dysfluency.

While medical professionals may seek to identify causal biological issues, those interested in the social or cultural models of disability are deeply involved in considering how the social and representational environment affects the condition of dysfluent people.

It is important that a social or cultural model does not entirely exclude medicine or speech therapy, but that we use it to ask critical questions about how some of the assumptions of a curative model of speech might injure dysfluent individuals. 


-Zach and Josh

"What do you mean stuttering is not an individual and biological defect?" 

This question comes up a lot. After all, there are entire academic disciplines and professions devoted to understanding stuttering scientifically. The race is on, for example, to find the "stuttering gene" and to understand how the stuttering brain is different than a "normal brain" (the blog the stuttering brain is a prime example). I am not denying that stuttering can be mapped in the brain (although I am highly sceptical that a stuttering gene will ever be found), nor that it has some physiological causes. However, I do believe these are by far the least interesting and important questions we need to be asking about stuttering and communication disabilities.   

We intend to explore the history of disability activism in the future on this blog, but for now, consider that disability activists and scholars have been arguing persuasively for over 40 years that what we call "disability" cannot be located only in the body. Rather, disability is a complex interaction between bodies, cultural values, architecture, and social/economic structures. To take a famous thought experiment, who would be "disabled" if every building was designed for wheelchairs instead of for those who walk upright? In such a world those who walk rather than wheel would be disadvantaged or "disabled," hunched over through hallways and hitting their heads. No one is arguing that being paralysed doesn't have biological and physiological causes. Rather, activists and scholars are insisting that "disability" goes far beyond these bodily differences, and results from the social barriers set up by a world that is not designed to meet our needs. If we can think outside of medical models for a minute, disability reveals a lot about how our society is structured: which bodies we think are important, who gets to be heard and why, how time is supposed to be used, and what our bodies are supposed to be used for. 

If this work has been going on for over 40 years, why has it taken so long for discussions of stuttering to catch up? The medical and scientific conversations that frame stuttering as an individual and biological defect come from a very particular way of seeing the world. This medical view of the world is certainly useful in some circumstances (if I go for heart surgery, for example, I want to be sure that the surgeon knows what she's doing), but this is not the only, nor the best, way of viewing the world and our bodies. The scientific and medical conversations about stuttering need to be analysed from a social perspective that focuses on justice and rights, and seeks to understand how our societies are set up to value some speaking bodies and devalue, stigmatize, and pathologize others. Our world privileges able-bodiedness, and the medical/scientific view of the world only reinforces these values. This view does not help those of us who stutter; instead, it leads to impossible expectations, stigmatization, and shame. We have to believe that these social values and structures can change, and that we together can make these changes.

-Josh