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.
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.