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Voluntary Stammering finds new meanings in Stammering Pride

11/28/2018

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PictureSource: Webmd

The power of stammering on purpose is well-known within the stammering community and it is included in a wide variety of therapy programs. People who stammer (myself included) are often not too keen to try it (we’ve been trying to avoid stammering all these years!) and take quite a bit of coaxing before giving it a go. It is typically sold in therapy programs as a means to an end. It is way to desensitise the individual to the stammering moment, so as to later gain more fluency and confidence from the reduced anxiety around speaking.
​

I remember the first time I tried voluntary stammering. It was a profound moment. The sensation I felt is not explained by this torturous medical model understanding. If we look at voluntary stammering from a social model and Stammering Pride perspective we can better understand where its power really comes from.

Voluntary stammering gives the person who stammers the power to convey a consistent stammered identity to society. Let me explain. The variability of stammering has confused people who stammer, therapists and researchers for centuries. People who stammer flitter in and out of a stammering identity in society. I can be fluent during a presentation and then one hour later stammer when getting a bus ticket. Each time we speak are unsure which identity we will occupy: the fluent person or stammering person. Voluntary stammering can give people who stammer power over this flittering between identities. We can willingly display our stammering identity and exert our right to stammer in society. We can reject society’s attempts to push and encourage us to value our fluent identity over our stammered identity; being deliberately dysfluent allows us to proudly display our stammering when normally we would not be able to due to natural fluency. We can then explore what it means to stammer in different moments and settings.

Charles Van Riper encouraged voluntary stammering as part of “a bath of stammering” to desensitise the individual to stammering. Under the social model, creating “a bath of stammering” can find new meaning in desensitising society as well as ourselves to stammering. Each time we stammer we increase the visibility of stammering in society. This most often will be our local society, family or friendship groups, but sometimes it may be much larger if we stammer on television and the radio. Voluntary stammering can be therapy for society. By stammering more, we can create a safer space for ourselves and future generations to stammer in.

Stammering on purpose also provides us the opportunity to redesign our stammering behaviours. As people who stammer go through life we can pick-up behaviours that become part of our stammering – for example, foot tapping or head bobbing during a block. These may have become a part of our stammer as we tried to find ways to be fluent – by using a metronome device or by forcing words out. Voluntary stammering allows us, if want we to, to look at these aspects of our stammering again and stammer in the way we want. It can allow us to stammer free of old struggle behaviour. We can design a part of our stammering identity.

Voluntary stammering is a revolutionary act. It enables us to willing embrace our stammering identity. It provides people who stammer the chance to design part of their own stammering aesthetic as well as tackle societal prejudices at the same time. It is a gift from the medical model that can keep on giving in a social model set-up.
​
-Patrick Campbell

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I No Longer Dream of Being Normal

10/30/2018

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PictureSource: NYC Stutters

On Sunday, October 21st NYC Stutters held its annual one-day conference exclusively for people who stutter.  


As I spoke with other attendees at the end of the day, I began to understand more deeply the discomfort I commonly feel in stuttering spaces and how this relates to the larger disconnect between stuttering communities and the world of disability justice. Several folks, responding to my comments as part of the intersectionality roundtable, described their perspective that stuttering is the only thing keeping them from fulfilling societal expectations of normalcy.

These comments have stuck with me since the conference, because they have helped to explain for me why so many people I’ve met through the self-help model of stuttering community have a seemingly singular focus on striving for the privileged status of fluency, a goal I’ve never quite understood. For folks who hold privileged identities in all or most other aspects of their lives--people who are thin white cisgender straight men, financially stable, college educated, speak English as a first language, documented citizens, non-immigrants, Christian, and are not otherwise disabled (no matter their personal opinion on labelling stuttering as a disability)--stuttering is the one thing separating them from the normative ideal we’re told to pursue. This makes more sense to me now.

When I describe myself as a professional hot mess, I’m similarly talking about all the ways in which privileged status is categorically out of reach for me. As a dysfluent, Autistic, chronically ill, queer & trans wheelchair user, there are just too many ways in which I fail to appear and behave in the manner our society prescribes. I also know that as a white person, I’m given many more opportunities to be taken seriously than people of color ever are. And this is why I talk about shifting our perspective toward critique of the standards themselves instead of critique of those who fail and are failed by them.

As I have grappled with acceptance of and pride in each of my identities I’ve had to let go of concern about the impact to my image in the view of others, much in the way I imagine more privileged stutterers do when they speak of overcoming their dysfluency. I am certainly not immune to the pressures toward compliance and assimilation, it’s just that after so many years of hating myself for trying and failing to fit in, it seems more productive to expand our views on who we take seriously as a society, who we care about and see as experts of their own experience, than it is to continue to devalue and harm those who don’t meet such narrow definitions of normalcy.

And this is where I find the missing link between stuttering focused communities and the larger world of disability justice. So much of what I’ve observed in stuttering spaces is influenced by the dream of assimilation. It’s what underlies most (if not all) of stuttering-focused speech pathology, it’s what pushes stutterers to pursue yet another form of treatment. It’s even evident in the movement toward acceptance, in the campaigns for people to accept that stuttering is a permanent part of their lives but which do not call for any meaningful societal change. It’s behind the Even Though statements I’ve come to expect from privileged stutterers: “even though I stutter, I’m intelligent” or, “even though I stutter, I’m good at my job”. These are statements that assert all the ways a speaker fits in, mitigating the one in which they don’t.

But what about stutterers who are also intellectually disabled, or who can’t work because of discrimination or health, or who stick out in more ways than they fit in? Disability justice holds that our individual liberation is bound up with that of others, that we cannot successfully campaign against the way we’re treated because of our speech if we’re not simultaneously fighting against every type of oppression, including ableism in all its forms. It seems like some folks see the goal of awareness campaigns and public education as expanding society’s definition of normal to include dysfluent as well as fluent speakers. But what do we achieve in granting normalcy to only the most privileged among us?

A question was raised at the end of the day - what can we do that will positively impact the majority of stutterers who won’t ever attend a conference or access a self help group? My mind goes immediately to civil rights work, to testing and clarifying the rights afforded to stutterers by existing civil rights legislation like the ADA and IDEA, and to increasing the visibility of stutterers in cross-disability campaigns for access, justice, and change. But none of these things are possible without learning and adopting a disability justice framework.
While I am quick to critique them, I don’t want to discount the potential power of self help spaces for stutterers. When I first began to examine my relationship with my speech and develop my dysfluent identity, attending a local group was a critical resource. I’ve forged powerful and long lasting friendships through such groups. It’s just, once I’d accepted my dysfluency, I wanted to move on to larger scale discussions. It takes some folks longer to reach acceptance, and for that I’m glad these spaces continue to exist. I’m glad that at my first local meeting, I had role models in those who had already found answers to the questions I was asking. My dream is that we as a community can have groups and conferences that exist alongside advocacy work.

I absolutely love this conference, and as much as it can be a politically exhausting space as a multiply disabled person, I love the discussions that start in these rooms. This event is unique in many ways: New York City has the most diverse group of stutterers in the nation, the event being closed to fluent SLPs and family members allows us space to be vulnerable and to define ourselves, and we’re also able to observe and interrogate the ways in which the imposed standards of fluency have influenced our work and, critically, our perceptions of ourselves. 
​ 

I am absolutely thrilled by the creative potential I witnessed on Sunday, and I know that as long as this amazing space continues to exist, this work will continue to develop.

-Erin

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Writing from the Other Side

9/28/2018

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Picturesleekcover.com
Hello! I somehow survived. I wrote a dissertation and will be a doctor in just a few weeks.  
 
Maybe instead I should have started with an apology. Did I Stutter has fallen to the back-burner for us these past two years as we have waded through the struggles of grad life and life in general. I have missed blogging and apologize for our general absence.
 
However, I have been very busy! Charis and I published a critical history of SLP this summer and I wrote a 300 page dissertation (basically a book) on dysfluency in its current political, social, and economic context (if we want to be fancy, in the context of “semiocapitalism” and “late-liberalism”). It is more accurately a critique of fluency in the information age, a critique of the need and desire for smooth flows of speech and information. To speak today requires that we interface with and even speak as machines (think, for example about technologies like Siri, Alexa, and Google home). Speech plays a different function today then it once did which, I suggest, drastically changes the meaning of speech, fluency, and dysfluency.
 
I hope to start blogging again soon and to translate some of these ideas out of academic-speak. 

​-Josh

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Straight Lines and Crooked Speech: Stuttering a Crip Politic

8/28/2017

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        What does it mean to posit
straightness
         as about becoming rather than being?
         (Ahmed, 553)

Toil

I struggle to speak, so I’m told.

Apparently I labor over words; they gap and cram, clawing at my mouth. I used to deliberate over phrasing to avoid l’s and w’s—those pestery sounds that would not eject. But inevitably some other would take its place unexpectedly and inopportunely. It was a futile game of outwitting my tongue.

Speaking is no longer this type of work. I now say whatever I Wwwaaa---
wANT, no matter the charitable interjections, the averted eyes, or the length of the Starbucks line. Yet there is still labor. Sarah Ahmed remarks that the embodied “repetition of work is what makes the signs of work disappear” (553), but for me redoubled work merely produces the repetition of signs.

The labor theory of value suggests that (exchange) value is produced in relation to the labor invested in a commodity. Yet the value of speech seems to exist in an inverse relation to its production process. I feel the value and the weight of my words sharply decline as they linger in the air, shaped and reshaped. People edge away anxiously, wishing they had purchased a warranty, looking to shop elsewhere. I struggle to speak. I am a perversion of capitalist logic.

Disabled speakers are nonetheless artisans. We welcome syllables like old friends and are not quick to part. We tongue the edges and clefts of phonemes. It takes effort and skill to do what we do. We form wor/l/ds with great care and sometimes with playful abandon. We stretch and clump language into polyglot shape, into our shape, into shapes that exceed our control.
​
People tell me that I struggle to speak, that I struggle with stuttering.
They are the ones who struggle, and fail, to understand.

It may be true that our bodies knot winding time and limbs in the concerted effort to speak linearly. Yet read through a crip and queer phenomenology, perhaps the disabled are not the misshapen ones. Bodies, as Ahmed notes, are formed and twisted into straight shape through the forceful repetition of norms over time (553). The straightening of bodies is an achievement of history: being orientated and habituated to move predictably towards desirable (capitalist and heteronormative) futures.  

Defying straight norms, futures, and bodily comportments gathers the crip and queer together in generative dialogue.

The production of fluent and linear speech—wringing tongues, contorting bodies, and sitting on hands—is complicit in reproducing straight distorted temporalities. Perhaps the rational and calculable trajectory of fluency, of logos, is a very condition of possibility for straight time and futurity. Shooting words like an arrow through time (or time like an arrow through words) is a capacity engendered by ableist choreographies of the body that restrict certain capacities in order to induce clear, fluid, and rational speech.[1]

How, then, are bodily capacities, relations, meanings, and futures cut off by the straightening of speech? More importantly, what queer/crip capacities, relations, meanings, and futures are made possible by crip/queered speech?

Lurking in this project is a question of bad faith that I must face up front: is my stuttered voice not simply attempting, yet failing, to speak rationally, fluently, straight? Robert McRuer reminds us of the compulsory yet impossible demand to perform able-bodiedness. How am I answering the question “wouldn’t you rather talk like me?” if I still chase and grasp at legibility? This worry gnaws at my crip consciousness.

Disabled speech is admittedly ambivalent in its failure at compulsory able-bodiedness. There is, however, a difference between stuttering crip and stuttering straight.

McRuer writes: Critical de-composition . . . results from reorienting ourselves away from [compulsory able-bodied] ideals and onto the composing bodies—the alternative, and multiple, corporealities—that continually ensure that things can turn out otherwise. Put differently, critical de-composition results from actively and collectively desiring not virtual but critical disability and queerness (158).[2]

A stutter is seemingly a virtual and a critical failure. Our speech fails spectacularly, but our stubborn effort to trace linguistic norms signals a complicit and knowing answer to the question “wouldn’t you rather talk like me”? (McRuer, 9) The collective anxiety stirred by our spectacular fail (Peers 2015) is followed by a sigh of pitied relief.   
So let me be clear: stuttering crip is a transformation not in the phonological but the political-phenomenological register. Stuttering crip may often sound the same—grasping for words in crowds and chasing down runaway syllables scattering into noise. Yet to reduce our speech to floundering straight lines assumes an impossible mastery over language and communication. This is a basic intuition of disability politics: outsiders do not get to decide what our bodies mean.

Stuttering crip is thus to stutter subversively, playfully, critically. It embodies the rhetorical posture of mētis, as Jay Dolmage describes it (2013), in the effort of interrupting logical flows. Stuttering crip creates affective openings and invitations to gather within subaltern spaces and temporalities. Like claiming crip, stuttering crip is not grasping an identity as much as becoming into a political community.   
        
If stuttering crip is a struggle at all, it is not a struggle to communicate despite (and against) the body, but a sympoietic struggle with the body against those who delimit the range of intelligibility, police the boundaries of noise, and confine and straighten our voices.     
 

Straightening Speech

Apollo is the patron god of straight speech.

He drives, Nietzsche reminds us, towards rationality, order, clarity, and distinction (40). His is calculation of form and measured constraint. He is the god of light and deity of the bow.       

What are words for the Apolline but arrows and missiles? The body arcs and tenses, its energies coiled, flexed, focused to a single point. Words are discharged, let loose, the phallus flings itself into the world—shooting straight.

What are speech pathology and ableist norms of communication but Apolline technologies?    
 “Slow down”
                     “easy onset”
                                               “breathe”
                                                                    “focus!”
More pressure here, less tension there—breathe: our bodies are shaped and straightened within primary school hallways so we can return to class and fill our quivers with words.

The social pressure to follow a certain course, to live a certain kind of life, and even to reproduce that life, can feel like a physical press on the surface of the body, which creates its own impressions for sure. We are pressed into lines, just as lines are the accumulation of such moments of pressure (Ahmed, 555).

Our bodies are pressed into lines that fling futures. Corporeal technologies produce temporalities, and straightened bodies shoot time through words. These technologies upon the body are at times most industrious. As Benson Bobrick points out (100-103), the nineteenth century went wild unknotting and rehinging tongues with scalpels. Flesh was cut, tongues were forked. Frankenstein gadgets convulsive with springs, tubes, and drills have clasped our heads, holding the teeth apart, the palate in place, words dripping down our shirts.
These panicked technologies have no end.

Today we are more humane. Syllable counters measure and ration words, the tick-time drum directing sing-song fluencies marching down time. Anti-stuttering devices are thrust in our ears that clone and compress choraled voices into straight lines facing forward, always forward.

But for all this effort, crip futures, like crip bodies, are unpredictable and aporetic. They resist somatic orientation. Recalcitrant and rigid, our bodies buckle, trip over sluggish tongues. We are, Alison Kafer describes, cast out of time, “the sign of the future of no future” (34). Or perhaps our bodies simply do not shoot straight; our futures accordingly can neither be charted nor controlled. We are not an absence but an excess of futurity that cannot reduce to a single, straight, intelligible line.

Habituating the body to bend its energies towards the production of fluid speech and phallic futures is thus to curb super/-/fluent capacities. Autistics are compelled to restrict stimming, to sit on their hands (to have “quiet hands,” Bascom 2012), and thereby reroute bodily capacities to the production of normalized communication. Why are the facial tics and wild gestures of stutterers and other dysfluent speakers never communicative inflections, but made abject and cast out of the communicative realm altogether (Richter 2014)?

Logos has made its decree:
to speak in its name you must speak as its name.


Cripping Speech

Janus is the patron god of crip lips.

Two-faced Janus of beginnings and endings. Of moving-betweens—of transitions and interstitial spaces. 
The god of words ensnaring time on the threshold of lips. Of beginnings with ends that no one can know. In the everted space between “now” and “then” lie crip worlds where time is fashioned and sent out to play. Crip lips catch words flying straight and sit down for a chat; they create something new.  

Hephaestus is the patron god of stuttering crip.[3]

Hephaestus with splayed feet twisted in opposite directions. The cunning, the inventor, and craftsman. Hephaestus of crooked and sideways steps that sneer at straight time marching from lips.

Crip speech erupts from bodies, bubbling and doubling from teeth, hands, and tongues. There is here no phallus cleaved from the body, streaking forward through the world, but a field, a whirl of sounds, gapes, and grimaces forged into crabwise, prosthetic, and partial meanings.

The body of history has been shaped to look like an idealized human body: proportional, inviolable, autonomous, upright, forward facing (white and masculine). But if you find the rhetorical body, you find tension, trial, and trouble (Dolmage, 16).

Cripping speech is to concede that straightness is a technological, narrative, and rhetorical coup d'état over and through the body. It is, Dolmage contends, a dual movement of exposing the idealized human body as primordial patchwork (thinly plastered, sanded, and then put on display) while emphasizing the heterogeneity of rhetorical bodies (16).   

It disavows the piked, smug, and straightening line of syntax and profit growth, and rather to desire meaning that, as Deleuze would say, balloons and bulges from the middle (1997, 110).

Cripping speech is to grow ears, from seed if need be, that revel in excess and incoherence.
But cripping speech is most importantly to
        stutter
        squawk
        and                                                                              sp/l/it crip.
Stuttering straight wrests sidelong-forward with restless, anxious steps, wary of jolts and cracks. But we, veering edgeways awry over terrain, sprouting protean limbs that vine and couple bodies to bodies in meaning and motion, stutter crip with the patchy gait of Hephaestus (Dolmage, 108). Bacchic clatter, drunken wobbles, and knotted grins. This is mētis, the cunning and creative dance of language.

The patron god of stuttering crip is the trickster.

Coyote. Crow. Hephaestus. Hermes. Jackal. The trickster has many names and shapes, bringing trouble and chaos—doubt. She rides double-tongued imitating gods and beast. Double-tongued forking linear tales and dislodging the center.       
                    
[Her] function . . . is to add disorder to order and so make a whole, to render possible, within the fixed bounds of what is permitted, an experience of what is not permitted (Kerényi, 185).

Tricksters are not bound by socio-political conventions of propriety; outside order they “break in, thieve, steal away, and cause havoc in the normative human register and, ultimately, express life in productive ways” (Goodley, Huges, and Davis, 8). She is scandal and possibility.

The trickster stutters crip, feigning straight lines while bending meanings into a cagey ruse. A queered Janus trap. A cunning snap of fluent futures (de)/re/composed; beginnings that swell from the middle.   
Her speech cannot be contained nor plotted along boundaries of noise and meaning. She is too wily for that.            
Tricksters are prosthetic rhetoricians. This trickster rhetoric becomes a crucial way to view mētis: as the universal and timeless importance of both making and undoing language through the body (Dolmage, 219).

I must learn to speak double-tongued. If one tongue is purity, a clear-sighted projectile failure, two tongues are schemers. Two are conflicted, dishonest, wrapping words in prosthetic embrace and lurching, shapeshifted and profane, lips to limb.  

I must learn to stutter crip. To look them in the eye when I sputter hoodwink. Watch the unravelling of selves that slip sideways in crip step and return the question—“wouldn’t you rather talk like me?”


Re-telling

The title of Marty Jezer’s autobiography, Stuttering: A Life Bound Up in Words, summarizes the anxiety commonly experienced by stutterers: consisting precariously within language, subjectivities entangled through consonants, antecedents, diphthongs, and bilabials. For many of us, Jezer’s phrase conjures a Wittgensteinian language game from hell, a nightmare of isolation and cruel and impossible demands. It suggests a freakish Kafkaesque tale of linguistic bureaucracy, of syllables spilling down endless corridors, and words backing into words that pile up on cubicle desks with deadlines looming.

While vividly familiar, these anxieties are of course a remnant of straight speech and “normative shadows” (Overboe 1999) that stubbornly presume purity.

Moreover, these notions of story have run aground,
grown respectable and naïve.

Hans Kellner urges all historians to ‘get the story crooked!’
 . . . In his words, ‘the straightness of any story is a rhetorical invention’
(1989, xi) (Dolmage, 8).
 
“The truth about stories,” writes Thomas King, “is that that’s all we are” (2). This is a powerful quotation (my crip friend Danielle’s favorite) of origin myths and narratives that through many tongues and ears call worlds into being. For one stuttering straight, King, like Jezer, paints a dreary scene for people with communicative disabilities. It’s an anxious thought to be composed and glued by story when you regularly stutter your own name.
 
Yet King refuses to tell the story straight. He evades linear paths, indulging narrative tangents that slingshot in ellipses around the point; he holds us in suspense through exhausting repetition.

The telling of the story is important.

The becoming of the teller is important.

King’s indigenous, oral aesthetic points the way toward a stuttered crip politic.

Adding Ahmed’s to Kellner’s intuition, the straightness of any story is also a phenomenological achievement, a bodily orientation of speakers themselves. We shoot ourselves down lines, gaining inertia and coherence over time. A fabrication of bad faith. Story-tellers are bent, crooked, turned sideways by the very effort of telling ourselves and others straight.

Since I cannot tell the story in a straight line, and I lose my thread, and I start again, and I forget something crucial, and it is to [sic] hard to think about how to weave it in, and I start thinking, thinking, there must be some conceptual thread that will provide a narrative here, some lost link, some possibility for chronology, and the ‘I’ becomes increasingly conceptual, increasingly awake, focused, determined, it is at this point that the thread must fall apart (Butler, 35).   
 
The truth about stories is that that’s all we are.

What does that make me?

Stuttering crip, I become and am undone through story-telling—through my own name. My body breaks stories apart, decomposing arced meanings into possibility shot through with other voices. Telling stories, I get lost in the middle and become incoherent, oblique, as fragments of myself double and redouble through others.

This is a sideways future that resists coherence,
a becoming that can be neither anticipated nor controlled,
but lived together.

One of the tricks to storytelling is, never to tell everything at once, to make your audience wait, to keep everyone in suspense (King, 7).

Crip politics grows (from the middle) through stories and tellers decomposed.
 
Crip politics is an opening that must be stuttered into.
 
-Josh


 
Works Cited

Ahmed, S. (2006). Orientations: Toward a queer phenomenology. GLQ: A Journal of Lesbian and Gay Studies, Volume 12(4), pp. 543-574.  
Bobrick, B. (1995). Knotted Tongues: Stuttering in History and the Quest for a Cure. New York: Simon & Schuster
Butler, J. (2001). Giving an account of oneself. Diacritics Volume 31(4), pp. 22-40.
Deleuze, G. (1997). He stuttered. In Essays critical and clinical, translated by Daniel W. Smith and Michael A. Greco. Minneapolis, MN: University of Minnesota Press.
Dolmage, J. (2014). Disability Rhetoric. Syracuse, NY: Syracuse University Press.
Goodley, D., B. Huges, and L. Davis. (2012). Introducing disability and social theory in Goodley, Huges, and Davis, eds., Disability and social theory: New developments and directions, pp. 1-14. New York: Palgrave MacMillan.
Jezer, M. (1997). Stuttering: A life bound up in words. Toronto, ON: Harper Collins Canada / Basic Books.
Kafer, A. (2013). Feminist, queer, crip. Bloomington, IN: Indiana University Press.
Kellner, H. (1989). Language and historical representation. Madison, WI: University of Wisconsin Press.
Kerényi, Karl. (1969). “The Trickster in Relation to Greek Mythology.” In The trickster: A study in american indian mythology, Paul Radin. Greenwood Press Publishers, New York. 
King, T. (2003). The truth about stories: a native narrative. Toronto, ON: House of Anansi Press.
McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. New York: New York University Press.
Nietzsche, F. (1999). The Birth of Tragedy and Other Writings, translated by Ronald Speirs. New York: Cambridge University Press.
Overboe, J. (1999). Affirming an impersonal life: A different register for disability studies. Journal of Literary & Cultural Disability Studies Volume 3(3), pp. 241–256.
Paterson, K. (2012). It’s about time!: Understanding the experience of speech impairment. In Routledge handbook of disability studies, ed. Nick Watson, Alan Roulstone, and Carol Thomas. New York: Routledge.
Peers, D. (in press). From inhalation to inspiration: A genealogical auto-ethnography of a supercrip. In S. Tremain (Ed.), Foucault and the government of disability, 2nd Ed. Ann Arbor: University of Michigan Press.
Richter, Z. (2014). Repairing the textual wholeness of the dysfluent voice: The politics of speech and noise. Society for Disability Studies Conference. Minneapolis: MN.
St. Pierre, J. (forthcoming 2015). Distending straight-masculine time: A phenomenology of the disabled speaking body. Hypatia Volume 30(1).


[1] For more on bodily choreographies in relation to dysfluent speech see Paterson 2012 and St. Pierre 2015.

[2] McRuer insists that able-bodiedness is a fictive ideal impossible to embody but nevertheless compulsory in its performative demands: offering the appearance of a choice where there is actually none. We thus all continually fail to perform able-bodiedness, in either of two ways: “virtual” failures of compulsory able-bodiedness are those (perhaps small) slip-ups which can be absorbed into the logic of normalcy, while “critical” failures rupture its plane beyond repair.

[3] My use of Hephaestus mythology in this context is a playful engagement with a central motif in Dolmage 2014. 

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Community On Our Own Terms

8/15/2017

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It has been several months since I’ve contributed to the blog. In that time, I’ve been thinking a lot about the role of community in disability culture, and the ways that I interact with various disability communities. As a multiply disabled person, stuttering accounts for only a portion of my advocacy work. Through conversations in person and online, I have contributed to and learned from the communities formed around movements including #CripplePunk, [1] #CripTheVote, [2] #DisabilityTooWhite, [3] #DisabilitySolidarity, [4] and the work of ADAPT [4].

Disabled communities comprised specifically of disabled people are distinct from the larger disability community which typically includes caregivers, family members, advocates, and other people who consider themselves allies. By gathering for conversation with one another, disabled people are able to define our lives and our experiences in our own terms, push back against ableism in society, organize advocacy efforts, and support each other. This discourse is critical to the continuation of disability culture, and it is critical that spaces exist for disabled people to communicate in community without simultaneously fighting against ableist attempts to define our bodies, lives, experiences, and worth.

Last spring I attended the New York City One-Day Stuttering Conference. It was an incredible experience--having an entire day to be in community and conversation in a space explicitly for stutterers. Having insulation from fluent society for the day provided safety to engage in conversation in a different manner than I have felt comfortable in groups attended by fluent SLPs and others. Through presentations, breakout sessions, and informal conversation, I had many interesting and substantive discussions with other stutterers about the stuttering community itself - about challenges we face, ways we can change, and areas for future work.

Leaving the conference, I have many questions I’d like to pose to stutterers as a disabled community: how can we align our community with larger disability justice work? What perspectives and experiences are underrepresented in our narratives? How can our communities address ableism with an increased awareness of intersectionality? What spaces exist in person or virtually to continue these conversations in community?

It is a luxury to be able to ask a question about disability and know that any answer will come from a disabled person. If I were to ask any of these questions in a mixed dysfluent/fluent support group, or on Twitter, among the answers I’d receive a flood of unsolicited advice from fluent people, pity from those observing my experience from afar, and the opinions of people who consider themselves experts on my voice.

This is the gift of community--space away from distraction. When fighting against stereotypes, the force of ableism to misrepresent our lives, and a society which undervalues our perspectives, it is impossible to construct a venue for conversation where we can be vulnerable enough to reflect on our work and the manner in which we relate to each other. It is impossible to acknowledge the ways we have contributed to our community and account for the ways we have hurt it. It is impossible to imagine the ways we can better support one another when we are simultaneously fighting for survival.

-Erin

[1] Originated by Tyler at http://crpl-pnk.tumblr.com
[2] Originated by Alice Wong at https://twitter.com/DisVisibility
[3] Originated by Vilissa Thompson at https://twitter.com/VilissaThompson
[4] Originated by Ki’tay Davidson at https://twitter.com/KitayDavidson
[5] https://twitter.com/NationalADAPT

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Thinking Ahead

2/1/2017

0 Comments

 
PictureSource: Time
In the past month I have started writing at least three blog posts and have written parts of twice that many in my head. They all end nowhere. The problem isn’t a lack of ideas but the awareness that we are living in very uncertain times. To be completely blunt, it is hard to write about stuttering justice when many of my American disabled friends might die under the new administration. Like many throughout the world, I was scared on the night of November 8 for the future. But my fears as a white Canadian male regarding climate change or foreign policy were far more removed than the naked fear that flooded my facebook. I know people (you likely do too) who will simply die without the Affordable Care Act. Since November 8th I have watched them post photos of the monumental medical bills they pay for routine healthcare, and heard their stories of piecemeal coverage before the ACA came into place. I know people with chronic illness who have rationally explained their suicide intents if their insurance is cut, arguing that they won’t let the state slowly and painfully kill them over time. The grave worries go beyond the ACA. Proposed Medicaid block grants would be particularly devastating for disabled and elderly people. Many of the cabinet appointees have displayed a disregard for disability rights. In short, the proposals and the staff that the new administration seems determined to put into place are literally an issue of life and death for the disability community.
 
Don’t get me wrong. Stuttering justice is probably more important now than it has ever been. We need to think very carefully about what it means to speak and be heard in this new America. We need to think about the importance of clarity of speech in a post-truth world and what that means for people like us. We need to consider how communication is being eroded by money. But . . . how does one write about such things when many of my friends will literally die if the ACA is repealed? Those who are multiply disabled or experience chronic illness will most likely experience oppressions that people who stutter will not. What does this time of great uncertainty mean for stuttering activism?
 
I honestly don’t know.
 
What I do know is that we need solidarity within the disability community. One reason is that our fate is necessarily tied up with the fate of the larger disability community. What happens to Autistic and Deaf people is connected to us, even if we don’t always recognize those connections right away. This means, second, that people who are more privileged within the disability community and isolated from immediate danger need to look out for those who are not. Moreover, I think this means coming to a greater recognition of how race, class, nationality, gender, and sexuality intersect with disability. We have talked around this issue often on the blog, but being Black and having a stutter or being trans and having a stutter or being a woman and having a stutter is most often a very different experience of oppression than it is for someone who is privileged in all ways except their stutter. We need to become more attuned to these differences in our midst and not try to paper them over to achieve a thin concept of disability justice.
 
I think stutterers are actually well equipped for this task. We have been made into good listeners by an ableist society that demands silence from the abnormal, but perhaps we can use our tongues that are slow to speak and our attention to conversational nuance for something greater as we advocate for disability justice in the days ahead.  
 
 -Josh


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Reclaiming the Dysfluent Disabled Voice

10/22/2016

9 Comments

 
Picture
Source: Disability Network

Within stuttering communities, the discussion of whether stuttering should be considered a disability is complex. Some stutterers identify as disabled, and some do not. We at Did I Stutter understand dysfluency through the social model of disability, and identify ourselves as disabled. Conversely, the self-help movement is based on a medical model of stuttering and its followers largely reject the idea that stuttering is a disability. Identifying as disabled is a personal decision that should be the right of all stutterers. However, the portrayal of disability in self-help spaces makes clear the influence that speech pathology has on the self-concept of stutterers.

Some of the most blatantly ableist language I’ve ever heard has been in the context of stuttering self-help groups. When asked if they think stuttering is a disability, stutterers cringe and list off stereotypical characteristics of disabled people as evidence of a standard that they don’t meet. Disabled people, I’ve been told, are helpless. They’re impaired, incapable, and dependent on others. To be disabled is to inhabit a body that is undeniably broken, mangled, and crippled. To be disabled is to give up. Stutterers tell me that they’re not disabled because they can overcome their dysfluency. They can use speech tools and substitutions to pass as fluent. They use person-first language to assert that they are whole, un-afflicted persons when removed from their speech.

In these interactions, I see the deceptive power of speech pathology. SLPs push the narrative that a person can always be brought closer to fluency through therapy. As long as there’s some hope of measured improvement, or recovery, or a cure, to identify as dysfluent is to reject standard of fluency. To call oneself disabled is framed as a choice, and becoming fluent is framed as its alternative.

I understand the appeal of choosing to blend in. Before my physical disability progressed to its current state I had the privilege of invisibility. By staying silent and slipping into the back of the classroom, I could choose to hide those aspects of my identity. Nobody had to know about my illness or my dysfluency unless I decided to let them in. Now that I use a wheelchair full-time, disability is the first thing I telegraph to everyone I meet. I no longer have the freedom to slip my cane into my bag when I feel unsafe or just don’t want to be stared at.

Regardless of the times I wish for invisibility to avoid stress, I’m not at all ashamed to call myself disabled. I am proud of my voice and my body. I am proud of the difference and the community it has brought me, the history I speak with every repetition. When stutterers say their speech isn’t a disability because they haven’t let it define their lives, I understand. And I also think about the first time I called myself a stutterer – how it changed nothing about the sound of my voice, but suddenly I’d stopped fighting to be someone I wasn’t. For the first time, I could imagine someday liking the way I speak.

Today is International Stuttering Awareness Day. Today is a celebration of dysfluent voices, and the power that identity endows. Today, I like the way I speak. 

-
Erin

9 Comments

From Covert Stuttering to Solidarity

9/26/2016

3 Comments

 
PictureSource: vocal-key
I don’t remember exactly when I first heard or read the words ‘covert stuttering’, but it wasn’t that long ago. That may be surprising because I was covert for most of my 20s and 30s--I just didn’t realize. I actually thought that I had ‘beat’ stuttering. I thought the tricks I used--switching words, pausing to release tension, using interjections and avoiding a lot of speaking situations—were what I was supposed to do. The days where I could go without any stuttering were successes and the days where I stuttered, utter failures. I also avoided anything to do with stuttering altogether--articles, websites, podcasts. I even avoided a really nice colleague who stuttered. I felt like even thinking about it would reveal I was still someone who stuttered. I just wanted it behind me.

I started stuttering when I was about four. My parents didn’t panic since my father also stuttered, but they did put me in speech therapy starting in kindergarten. I continued all through elementary school and some of middle. I decided to quit in 7th grade because it wasn’t helping me, and frankly I hated it. I could use certain techniques in the therapy room, but as soon as I was out in the real world, they seemed impossible. By the time I was in high school, I had figured out how to come up with sentences that avoided words that I knew I would stutter on. I was quiet in class and antisocial with my peers. I even ate lunch in the art room where I could be alone and draw.

In art school I was plagued by anxiety. It was the first time I was away from home and the feeling that I lacked control over my speech returned. My mom pushed me to try speech therapy again. This time I learned how to identify tension and how to relax using pauses and slow starts. I was able to apply this outside the therapy room and added it to my arsenal of ways to keep from stuttering. I lived like this for years, more than a decade in fact. I still had words that I knew were off limits and I stuttered at times, but I was able to pass them off as ‘typical’ dysfluencies.’ I lived outwardly as a fluent person. On the inside, however, I was a nervous wreck. I was always in fear of revealing myself as a person who stutters. Because of this I avoided much of my life.

It’s hard for me to pinpoint the moment when I decided I’d had enough. A lot of events coincided, starting with the sudden and unexpected death of my mother. This was such a stressful time that I couldn’t be covert. Another was my father’s diagnosis of Alzheimer's and subsequent move from Chicago to be near me. Hearing him stutter made me more aware of my own struggle.

But the single most important event was that my colleague who stuttered moved into my department and I suddenly had to talk with her on a daily basis. Like everything else that involved stuttering, I had avoided her for years. I worried that she would recognize my odd way of talking for the fraud that it was. I thought she would ‘out’ me or at least confront me and ask me why I never told her that I stutter. I spent weeks trying to read her expression every time I opened my mouth. It wasn’t until about a year ago that I sat down and finally made my teary confession to her.  She told me she honestly hadn’t noticed because she’s always so focused on her own speech. She also told me how happy she was that I’d been able to talk to her. Her gracious response helped me to see that I had nothing to be ashamed of. It was this confession, and the immense sense of release I felt after, that helped me realize I needed to end the charade.

The stuttering community immediately embraced me the moment I was willing to identify as a person who stutters. I first reached out to folks from the NSA and StutterSocial. I started reading everything I could find (much of it useless) and spent hours listening to podcasts. I sent messages to people whose ideas interested me and got a chance to meet many of them when I attended the National Conference last summer in Atlanta.

Through all these conversations, I found so much common ground, especially with the other woman, many of whom had also lived as covert. In fact, nearly all the women I spoke with had been covert for at least part of their lives, and many, like me, for a large part of their lives. I wondered if this was merely a coincidence or if women tend to become covert more often. I talked to a friend who has done research on covert stuttering (though not in this specific area) and he supposed that perhaps women have different societal standards than men, especially involving appearance and presentation. Along with standards of beauty, body shape and reputation, women’s voices have been a subject of scrutiny for generations. No wonder women who stutter feel the added pressure to conform to social norms of how they should sound. Women are expected to be delicate and poised. Stuttering can, at times, be in direct conflict with this.

The other factor this friend suggested was that women may have stronger verbal memories. I did a little research and actually found that any differences in cognitive performance between women and men are more likely the result of society and cultural factors, rather than actual differences in gender, but this doesn’t really change the outcome. Women may be able to change words more easily or have larger working vocabularies. Becoming covert may be the result of social pressures and women may be encouraged to use the avoidance skills they develop over time. What really strikes me as sad is that once a girl or woman is covert, she belongs to neither world: stuttering nor fluent. We are caught in a limbo of denial and dishonesty. This is a painful and debilitating place to be.

I’m quite happy to say that I’ve reached a point where I am not just comfortable with being a person who stutters, but also proud. I see it as one of my more unique and interesting characteristics as well an asset. I try not to dwell too much on the choices I made about how I lived the first part of my adult life, because I didn’t know another option. In a sense, I was just conforming to cultural expectations. I can’t help but wonder, though: If women are more likely to be covert and, like me, spend a good part of their lives this way, could there actually be more woman who stutter than are being currently statistically identified? If data is collected only from people who self-identify or people who participate in studies, then covert stutterers would presumably be excluded.

Society must change how it criticizes all voices, but women’s voices in particular. We are often held to a higher standard and encouraged to alter how we look and sound to conform to social ideals of beauty and presentation. Women and girls who stutter are particularly vulnerable because we have an added difference in the way we speak. We are censored and silenced because of ableist expectations of how we should sound. We are convinced to buy into the idea that fluency is the ideal and as a result, many of us resort to avoiding large parts of our lives. Improvements have been made in terms of beauty and body image. It’s time to tell girls and women that their voices are worthy of being heard just the way they are.

-Elizabeth


3 Comments

How "You're Wrong" Is Not the Same As "I Disagree"

6/10/2016

1 Comment

 
Not long ago, I was accused of "holding back the revolution" for disability rights when I complained about non-disabled people getting the spotlight when talking about disability rights. As someone who studied to become an SLP but turned to disability activism instead, I learned that I wanted more disabled people to have the spotlight. Ironically, this is actually one of the messages of disability rights. So while expressing his heartfelt, honest, genuine opinion of me and my words, this person was engaging in defensive derailing behavior. We all might do it at one point or another when we feel that someone has devalued our hard work and efforts. But it's not productive. Derailing is never productive.

I really loved reading the post about the NSA, eugenics, and the presence of SLPs in peer support groups. I don't expect everyone, or really anyone, to also agree with or like the post. However, I'll admit I was surprised by the use of "you're wrong" messaging in the comments section. Often, "you're wrong" and "I disagree with you" were conflated in the manner of, "You're wrong because I disagree with you because my experience was different from yours."

I also noticed an interesting absence of discussing eugenics in the way Josh was calling when he wrote that "there is a massive elephant taking up the entire room that never gets talked about—that is, the inevitable eugenic implications of the search for a stuttering gene." The comments were more laced with emotional overtones, declarations of why Josh is wrong, and personal storytelling that primarily served to continue avoiding discussion of eugenics.

Eugenics discussions are important, and should be lead by the people who are most likely to be affected by eugenics: disabled people, people of color, poor people, women, and people who cross over in more than one of those identities. When someone in one of those groups brings up the conversation, and then others rush in to shut that person down, those others are reenacting the same power dynamics that are leading to eugenics in the first place. That is not equal to practicing eugenics, but it is damaging nonetheless.

People often avoid a difficult conversation--or more accurately, avoid talking about their own privilege--by waxing on for long periods, with extremely detailed personal story, listing some scientific facts unrelated to the social justice argument being made, or by saying, "But not me!" It may feel as if you're educating someone and adding perspective, but when the story gets long and detailed--names, dates, times, emotional responses, dialogue, proof why you're not one of the "bad ones" and/or filled with statistics--this is usually a sign that you are engaging in derailing and avoidance tactics even if you didn't mean to. I see this in some of the comments on the NSA post.

Of course, I don't want to engage in genuine dialogue with every blogger with whom I disagree. So I don't expect people to want to talk openly in a fair dialogue with Josh just because. But the defensive tactics used in the comments are the opposite of helpful. To call out Josh as incorrect and then ask him to have an open heart and tolerance is bizarre. To tell Josh that he's unfairly reprimanding people for engaging in things he has personally witnessed is to simultaneously silence his protest and escalate the argument he was trying to make.

​One of the things that makes our communities rich is diversity, and that includes diversity of thought and experience. If you don't like what someone said, I would urge you to not focus on how that person is wrong. "You're wrong" is not the same as "I disagree." And more importantly, "I disagree" should never be used, as it was here frequently, to attempt to silence someone because you don't like what they said. Whatever Josh wrote is true for him, his observations, and I can promise you also true for lots of other people, including me. You don't have to like it. You don't have to agree with it. But I hope that people can accept it anyway without feeling the need to insert corrections to his observations (they're his), disciplining him, or seeking his apology for having attacked you personally when he did no such thing. If you want to understand what I mean, please reread his post when you can do so without the physical or emotional signs of anger or defensiveness (sweating, pounding heart, clenching fists or jaw). Picture him saying these things to you as a form of self-advocacy. Stop reading when you have the urge to scream at him or otherwise correct him and try to view his words not as statements of fact but as observations, political arguments, and calls for increased social justice led by the people historically most harmed by a lack of social justice.

-Cheryl 


Resources:

Derailing for Dummies Guide: how to recognize tactics we use to end painful conversations by trying to change the topic or focus of conversation
A description of gaslighting: the ways we exert greater conviction over someone to convince them they are wrong--even without meaning to do that
Privileged Identity Exploration Model: a useful journal article around social justice dialogue defenses, including comparing and contrasting personal experiences, denying, deflecting, and minimizing (which are all tactics used in the comments to Josh's post)
1 Comment

The Future of the National Stuttering Association: Or, on Having One’s Cake and Eating It Too

6/6/2016

15 Comments

 
PictureAn image of multiple purple buttons with text that reads "National Stuttering Association / If You Stutter You're Not Alone" Source: Dallas News
The National Stuttering Association (NSA) does important work and in particular is a long-standing structure for stuttering self-help and community organizing in the US. The political importance of dysfluent people organizing and meeting cannot be underestimated. This critique should therefore be understood not as a critique against self-help and stuttering activism but rather against the encroachment of so-called “experts” and so-called “expert knowledge” within the stuttering community. As the famous disability rights motto states: “Nothing about us without us!”
 
With this firmly in mind, allow me to make two brash statements that I will defend: a) the NSA seems to be experiencing an identity crisis, and b) its new chair, Gerald Maguire, seems terribly confused about disability oppression. Both of these points were apparent when Maguire appeared on the Stuttertalk podcast last month to discuss the unfolding direction of the NSA. Brief history: The NSA was founded in California as the National Stuttering Project in 1977 by Bob Goldman and Michael Sugarman. The organization, which functions as a network of “chapters” across the US, was originally envisioned as quite a political project in line with the disability rights movement (it is not coincidental that the NSA emerged in California during the ’70s, nor that Sugarman is a long-time friend of the great disability activist Corbett O’Toole). While the NSA has evolved into the largest self-help and support group for stutterers in the US, its original political edge has been significantly dulled. That is to say, the kind of support that the NSA offers focuses explicitly on acceptance, treatment, and rehabilitation rather than a political struggle against the ableist norms, practices, discourses that structure dysfluent lives in oppressive ways. Part of this move can be explained by the increased presence of SLPs (Speech-Language Pathologists) within chapter meetings and at the national conference. Emma Alpern wrote an excellent piece in the Atlantic on the internal tensions or cognitive dissonance within the NSA between “treatment” and “acceptance” or between “experts” and “stutterers,”[i] and, as Maguire recently demonstrated, there is no resolution for this tension in sight.
 
Maguire is himself a person who stutters, and besides his newly appointed position at the NSA, is a professor and the chair of psychiatry at UC Riverside, School of Medicine. Maguire has published extensively on the etiology of stuttering and is widely considered to be a leading expert on stuttering’s “cause.” In this recent Stuttertalk podcast, he outlines the NSA’s twined vision moving forward: “meeting the needs of the stuttering community today while searching for the enhanced treatments of tomorrow.” In detail, this means things like creating a governmental arm to provide legal protection for stutterers while simultaneously engaging in “enhanced fundraising” so that the NSA becomes a major source of research funding for the “enhanced treatments of tomorrow.” While developing legal protections for stutterers is very important, there is major tension in a vision that drives simultaneously towards acceptance and treatment. When asked about this, Maguire responds in a very telling way: “Acceptance and searching for treatments do not need to be mutually exclusive. . . . Acceptance is very important and a goal for recovery. Acceptance is very important to optimize one’s adjustment to the disorder.” There is much to be said about thin vs. thick notions of acceptance, but here I just want to highlight that the attempt to hold acceptance or even activism in tension with treatment in effect flattens the former into the latter. Maguire is clear: acceptance must come to serve recovery. We cannot afford to pretend that “acceptance” and “treatment” are two perfectly equal options that co-exist peacefully. This is far more than an issue of cognitive dissonance.
 
One of the mistakes here is pretending that treatment and acceptance (or better, activism) represent two equal and free options for stutterers. Later in the episode, Maguire tries to deflect any concern that a “magic pill” to cure stuttering might be imposed on the stuttering population and take away our agency. “The power is in your hands,” he says, “it will always be the choice of the individual.” Knowingly or not, Maguire is here throwing his lot in with classical liberalism, a stream of political theory that holds the free choice of the individual to be the final answer to nearly everything. In deferring to the individual (better: in washing his hands of the ableism innate in cure by deferring to individual choice), Maguire aligns himself with dangerous ideas. For in practise, liberal ideologies (holding “acceptance” and “treatment” in tension; deferring to the choice of the individual) can cause great harm to marginalized peoples.[ii]
 
For example, allow me a slight detour through one of these so-called “enhanced treatments of tomorrow” to show the way our choice is never “free” but always skewed by ableist assumptions and values. Genetic research is a hot topic in the stuttering world and that’s not going to change anytime soon. For instance, Stuttertalk has brought Dennis Drayna (a chief scientific researcher on stuttering and genetics) on the show six times since 2009, and the stuttering community continues to be fascinated by the possibilities of this research. Yet there is a massive elephant taking up the entire room that never gets talked about—that is, the inevitable eugenic implications of the search for a stuttering gene. In episode 563 with Nina G, Stuttertalk argues that genetic research is useful to disprove the “bad” theories about stuttering (e.g. that stuttering is “caused” by negative reactions of parents). I agree with this in part, but it is crucial always to consider the cost—the potential harms to the stuttering community—of pursuing curative research.[iii] And eugenics is, for some reason, never on the table within the stuttering community, even though the ultimate aims of genetic research on stuttering are always hazy, but include some form of gene therapy. If it ever happens, gene therapy for stuttering remains a long way off, which is perhaps why stuttering activists’ concerns about eugenics are often brushed aside as hypothetical and slightly paranoid worries.
 
However, it is not gene therapy but selective abortion that is the most worrying issue. Consider that while the genetic structure of Down’s syndrome was discovered already in 1959 by Marthe Gautier, research into gene therapy for Down’s still remains in its infancy. However, selective abortions via prenatal screening have been a reality for a long time, and the rate of selective abortion against Down’s is alarming (between 70-90% across different countries). This is a form of “eugenics” which, as I have explained before on the blog, is the attempt to improve the genetic stock of humanity—literally to create better people. While state-level projects of institutionalizing and sterilizing disabled people have gone out of fashion, the belief that the world would be better off without disability has found new life in prenatal screening and genetics (what is often termed “newgenics”).
 
The ongoing struggle against eugenics by disability activists is very real; it is important that we learn from other disability communities. To take another relevant example, the Autistic Self Advocacy Network (ASAN) has taken a strong stand against the type of (curative) research the NSA is pursuing. Allow me to quote them at length:

​Genetic research promoting a prenatal test for the autism spectrum is also of grave concern. It should be noted that Dr. Joseph Buxbaum, an Autism Speaks-funded researcher, believes that a prenatal test for the autism spectrum could exist as early as 2015 – in fact, genetic testing for some types of the autism spectrum is already available. There is significant evidence that such tests will and are leading to the use of selective abortion to engage in eugenics against the developmentally disabled. It should be noted that approximately 90% of fetuses that test positive for Down Syndrome are aborted. While a prenatal test for the autism spectrum is significantly more complex to develop, once it is in existence the current climate of fear makes a similar result likely. While we do not hold an opinion on the abortion debate in general, we are deeply concerned by any effort to eliminate a particular kind of individual from the gene pool solely on the basis of neurology. Taxpayer funds should not be going to eugenics (ASAN)
The dream of a “cure” for disability is so heavily saturated within our culture that, with disability theorist Alison Kafer, we can speak of a curative imaginary: “an understanding of disability that not only expects and assumes intervention but also cannot imagine or comprehend anything other than intervention” (27). When we uphold the stigma that stuttering is best eliminated, it sets us down a dangerous path that 1) fine tunes technologies of intervention and elimination while 2) actively seeking to render any alternative unimaginable. Why, if it would become possible, would we not expect parents to screen for and selectively abort or remove “the stuttering gene” in vitro? Why—especially if there is no resistance from activist communities—would society not select against a range of disabilities including stuttering? Again, if these questions seem paranoid, remember how non-consensual therapy (a preliminary form of eugenics) is already framed within SLP: ​
​Stuttertalk: You're really looking to help a three-year-old child stop stuttering. That's just to be blunt about it. I've recently spoken to disability rights folks on air who I think they pretty much said, “Well, why? It's OK to stutter. We shouldn't be doing that.” And again, my thought was well, sure it's OK to stutter. But it’s really also OK if a three year old is stuttering to help the family in a way that hopefully help the child stop stuttering (emphasis added).
“It’s okay to stutter” and “it’s okay to eliminate stuttering” are lined up back-to-back as if they are completely equal choices within our society. But of course they are not. SLP has always been driven by an eliminativist logic that seeks to normalize, assimilate, and ultimately eliminate non-normative speaking bodies from the human population (DIS has written briefly on the history of SLP, and a full academic paper on this history is forthcoming). For example, when the famous Charles Van Riper was nearing the end of his career in the 1970s, he realized that his attention on adult rather than child stuttering was completely wrong since it failed to stem the tide of stuttering as a social problem. Van Riper recalls being reproached by a colleague in the early 50s for working so hard with adult stutterers: “Stuttering is a public health problem requiring an emphasis upon prophylaxis. You should be working exclusively with young stutterers, seeking to prevent or to reverse the morbid growth of the disorder rather than trying to treat it after it has become full-blown. What we really need is a nation-wide program focused directly on the very young stutterer” (quoted in Van Riper 1977). Van Riper is foretelling the current practices of non-consensual preschool therapy which in turn foreshadow more ominous newgenic futures (see endnote [iv] for Van Riper’s very odd eugenic fantasy).
​
One thus can’t even say that our society is doomed to repeat its eugenic history since eugenics has never left. We are continually fascinated with genetics as related to “well-being” and other such rhetoric of human betterment. We continue to oppress, marginalize, and exploit disabled people in this society. We continue to pass austerity measures (cut-backs) that squeeze citizens into socio-economic precarity that gives them no possibility to raise a disabled child. It is crucial to note that the eugenic abortion rate of fetuses with disabilities does not fall upon the individual women who are forced to make these choices, who often cannot afford to raise a disabled child due to this financial and social precarity. Rather, the combination of ableist stigmas, oppressions, and lack of funding produces a fertile ground for eugenics. With all this being true, why wouldn’t a person select against stuttering if given the chance? (In addition: why is this plausible eugenic outcome never even on the table within SLP discourse?) This is the context that the NSA seems not to understand. The power is never simply in the hands of the individual alone. Whether in vitro or after birth, power is not merely in the hands of stutterers but parents and the experts who advise them who are themselves influenced by ableist conceptions of disability. Disability oppression is far more complex than SLP recognizes and requires a distinctly political response.[v]  

Of course, I am not a soothsayer: the point is not that stuttering will share the Down’s community’s path of selective abortion. Stuttering is not as stigmatized as Down’s or Autism, has a different perceived effect on our lives, and accordingly might not be subject to such overtly eugenic practices. Given a host of contingent factors, stuttering may, in the future, be managed via prenatal screening and selective abortion, by intensified preschool therapeutic intervention, or by a completely different set of practices. Eugenics is flexible, adaptable.

The lesson is simply that the history of SLP, alongside the wider history of disability oppression and eugenics, charts a clear trajectory. When Maguire throws around the word “cure” he is expressing a eugenic impulse to eliminate that rarely gets named (though it certainly gets funded). Seeking legal protection for stutterers is fantastic![vi] But it is impossible to parcel out the “needs of the stuttering community today” from “the enhanced treatments of tomorrow.” The future of our disability community is part of, and shapes, our present. Disability activism isn’t an “if-only-society-wasn’t-so-ableist” fantasyland, but something needed right now to create communities against normalization (one of the main sources of dysfluent oppression) and provide an alternative to any oncoming eugenic future.

The NSA continues to be a central facilitator and resource for stuttering community—this is tremendous. But following a path that courts curative funding will continue to grind the political edge of the organization to nothing. Is this an acceptable loss?

The irony in this situation is that Did I Stutter has, from the very beginning, called for an increased range of choices for parents and stutterers. As our main page states: “We need to be given the choice of whether or not to receive speech rehabilitation. Dysfluency-positive and dysfluency-negative perspectives should always be offered before choosing long term speech therapy. We contend that at any age multiple perspectives on dysfluency are an absolute necessity for autonomous choice regarding one's therapeutic options.” One might say that Maguire offers not too much choice but too little. A “choice” implies genuine options. “Dysfluency-positive” (the full encouragement to not just accept but embrace and celebrate dysfluent voices) vs “dysfluency-negative” (attempts to reduce or eliminate stuttering) offer two very different understandings of the world, of our bodies, and of our relations to other people and to ourselves. Giving the parent[vii] of stutterers the choice between enhanced treatment #1 and enhanced treatment #2 is simply not a choice. Moreover, these discourses disregard the way in which any widely available “cure” will tremendously disempower those who wish to preserve their stuttering voices and identities, preventing us from receiving the accommodations that we are currently fighting so hard for. The stuttering community needs real alternatives. We challenge the NSA to do something braver than curative intervention that dilutes our struggle.                                       

-Josh


 Works Cited:
-Kafer, Alison. 2013. Feminist, Queer, Crip. Indiana University Press.
-Van Riper, Charles. 1977. “The Public School Specialist in Stuttering.” ASHA. July, 467-469.

------------------------------------

[i] To complicate the matter, many SLPs are themselves people who stutter making it difficult to disentangle “expertism” and activism.
[ii] See Wilson and St. Pierre, “Eugenics and Disability” (forthcoming 2016) for a critique of neoliberal eugenics. 
[iii] DIS is in no way anti-research, but we hold that research (and knowledge generation more generally) must be accountable to those it studies. In our context, research on stuttering must be accountable to the stuttering community by being much more upfront about the historic goals and costs of, for example, genetic discoveries. Again, nothing about us without us!​
[iv] In 1974, Van Riper writes a short history of SLP in ASHA entitled “Stuttering: Where and Wither” that reads as pretty straightforward history until the final section where he muses as a future historian about how stuttering is finally eliminated. The fantasy gets increasingly bizarre, dystopic, and eugenic as it goes along, culminating in brainwashing, the establishment of (what are essentially) residential schools, and the state mandating that stutterers cannot reproduce. Yet for all of this, Van Riper reads as oddly utopic: stuttering is finally eliminated. I am not sure how to read this text, but it definitely worth noting. Here is the final paragraph: “Balbus Blaesus also recognized that one of the limitations of the artificial mouth was that it was difficult for very young stutterers to tolerate. Using his new allies, the now fluent members of the stutterer's councils, Blaesus managed to get legislation passed that forbade any stutterer to have a license to beget natural children. Though adoption was permitted, any adopted child of such a parent was required to undergo special training in the special clinics whether he stuttered or not. Though by this time there were very few adult stutterers left, these and other stuttering children gave transitional employment to the specialists who staffed the clinics. But by the year 2700 they were no longer needed, and he stuttering clinics were closed” (487).  Van Riper Where and Whither
[v] In theoretical terms, the cultural and social understanding of disability is always framed by a system of what Robert McRuer (2006) terms “compulsory able-bodiedness.”
[vi] It must also be said that seeking justice on juridical terms is largely tokenistic without accompanying grassroots activism and a struggle against ableism itself. See Dean Spade’s (2015) Normal Life: Administrative Violence, Critical Trans Politics, and the Limits of Law for a very useful analogue in the trans community.
[vii] Note how quickly this liberal discourse implodes—it is the parent and not “the individual” making these life-altering decisions, which would in turn be explained using an unstable (not to mention ableist) threshold of “rationality.” A more robust theory of agency and relationality is needed.  

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