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Defining Stuttering

1/14/2016

3 Comments

 
On December 25, StutterTalk posted a fantastic podcast, led by their B Team, regarding Did I Stutter. It contained an hour of thoughtful conversation on the four main tenants of Did I Stutter as listed on our front page. I highly recommend listening to the issues discussed, and hope it will lead to even more conversation about disability rights within the stuttering community.

The podcast raised many points worth further discussion (and indeed many that have already been tackled and nuanced on this blog), but one in particular caught my attention as worthy of further comment, since it involved the very heart of what Did I Stutter is about.

The piece of the conversation I want to focus on begins at 4:25 in response to the first point on Did I Stutter’s page, where the readers are put off by Did I Stutter’s bold claim to know what stuttering is. Did I Stutter writes:

“we understand disability and stuttering not as an individual defect, but first and foremost as a social discrimination against certain forms of human speaking.”

By and large, the B Team seems to find this claim and its explanation reductive. Questions are raised about whether focusing on society/ableism discounts the experience and struggle of the person stuttering, the role of internalized ableism, and whether calling stuttering a matter of discrimination is “painting this concept with a wide brush stroke.” Caryn Herring in particular found herself defensive regarding the strength of the claim: “it’s telling me ‘this is what this is, and this is what I should feel.’”

The questions raised are mostly issues this blog has expanded on, and are certainly still open to continued discussion and molding. What struck me in listening, however, was how strongly the Team pushed back against Did I Stutter making a claim to know “what stuttering is.”

It struck me as odd, because I can think of very few stuttering organizations that don’t make a bold claim to know what stuttering is on their websites.

Here’s just a sampling:
  • "Stuttering is a communication disorder involving disruptions, or “disfluencies,” in a person’s speech."  National Stuttering Association (NSA)
  • "Stuttering affects the fluency of speech. It begins during childhood and, in some cases, lasts throughout life. The disorder is characterized by disruptions in the production of speech sounds, also called ‘disfluencies.’" American Speech-Language-Hearing Association (ASHA)
  • “Stuttering is a communication disorder in which the flow of speech is broken by repetitions (li-li-like this), prolongations (lllllike this), or abnormal stoppages (no sound) of sounds and syllables.” The Stuttering Foundation
  • “Stuttering is a complex communication disorder that affects approximately 1% of the population (over 68 million people) and 3 million Americans.” FRIENDS
  • “Stuttering is a complex and often-misunderstood communication disorder that can cause interruptions in a person’s speech.” Stuttering Association for the Young (SAY)

​These are by and large wonderful organizations, and the majority of these definitions go on to discuss not only the various manifestations of stuttered speech (repetitions, prolongations, etc.), but the social and lifestyle impacts of stuttering. My point is simply that every one of them is making a bold truth claim about “what stuttering is.” What’s more, every one of them is agreeing that stuttering is foremost a disorder. Stuttering is being presented outright as a medical/biological/pathological problem contained within an individual’s body. I can’t think of a more direct way of telling a person who stutters what their stutter is and how they should feel about it.

Given this climate, it is no wonder that Did I Stutter’s contrary claim that stuttering is absolutely not a medical or pathological disorder, but is rather a social discrimination, is indeed a new and unique statement. My point is simply that what is new about Did I Stutter’s claim is its content, not the fact that they would boldly claim to know what stuttering is. Indeed, medical professionals, SLPs, self-help organizations and the world at large have been telling us stuttering is a disorder in equally bold terms for all our lives.

Following the disability rights movement and the decades of research it has produced, Did I Stutter is refusing to reduce social differences to medical disorders, or let the language of “conditions” and “pathologies” define how we relate to our bodies. I understand the defensiveness that comes from being told what stuttering is, because it is that same defensiveness that fueled Did I Stutter’s opposing claim. I for one am tired and insulted by hearing stuttering voices referred to as disorders, and am grateful to read stuttering boldly defined as something else entirely. It is time for the world to start accepting that there is truly nothing wrong with stuttering.

-Charis
3 Comments
Katie Gore
1/15/2016 10:26:58 am

I'm curious what DIS' (and the disability rights literature/movement in general) has to say about organizations dictating what something is or isn't, versus an individual.

I think it's really interesting, valuable, and much-need that DIS has taken a very strong and bold stance that is a direct contradiction to the traditional and mainstream stance of stuttering = disorder.

However, if DIS identifies as a "movement" or "community" (?), arguing unequivocally that stuttering is NOT a disorder seems fraught with the exact same pitfalls as statements by ASHA, etc.: an external corporate group is asserting to an individual how they should feel about or conceptualize a phenomenon in their own unique body.

I'm guessing you can talk about stuttering as a general phenomenon abstracted away from individuals for academic and philosophical purposes. But, if a goal of disability rights is to bring autonomy to individuals (? is it, I don't know much about this ?), it seems this type of dialogue is just a different side of the same coin.

Again, I think DIS is critical because without such strong statements, and given the entrenched dialogue on the medical side, individuals might not even know that this conceptualization of stuttering is even a valid option in the first place.

Once the dialogue and spectrum of options for self-definition is created, though, how does DIS' position relate to an individual's right and ability to choose what resonates with them?

Thanks!

Reply
Josh
1/19/2016 09:10:01 pm

This is an excellent question; thank you so much Katie! For me at least (DIS doesn't have a singular voice), there are a couple parts to this answer. First, I don't think anyone truly *dictates* what stuttering is or is not. SLP certainly doesn't--precisely because it doesn't have to! The biomedical definition of pathology offered by SLP is simply assumed to be *natural* or self-evident in nature according to a scientific and thus rational paradigm. And disability rights organizations don't dictate--if by dictate we mean "force people to adopt our perspective." This is both because it runs counter to a disability politic and because disability rights is never in a social and political position *to* dictate the truth of stuttering. Our voices and perspectives are by definition marginalized.

Second, and related, I believe it is very difficult to talk about "choice" in any meaningful way at this stage. Making a choice about how to relate to our stuttering in a way "that resonates" is never a completely "free" choice when we live in a society as ableist as ours. Our decisions are skewed before we start such that I honestly don't believe "the dialogue and spectrum of options for self-definition" will be created in our lifetimes.

DIS has always maintained that therapy is a choice not a duty and we have had no intentions of dictating other's relation to therapy. But contesting structures of *power* is a very different thing. I think if we as a stuttering community want to move towards a *more* informed decision-making process involving *less* skewed conversations, we need first to talk about power relations between SLP and patients, between medical-scientific claims to authority vs activist-political claims to authority.

Reply
Shannon link
1/18/2016 01:04:35 pm

Great post, I have recently started my own blog;

https://stammeringly.wordpress.com/2016/01/18/stammergirl-post-1/

Reply



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