DID I STUTTER?
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Good Communication

10/28/2014

5 Comments

 
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After years of fluency-shaping speech therapy, I finally found a different approach when I learned about desensitization and stuttering acceptance. It was a huge relief to learn that there was another option for people who stutter: one that didn't necessarily involve fluency. The idea that I could be content with the way I talked while still stuttering was never an option to me before, and it honestly changed my life. Since then, I've managed to overcome a lot of the frustration that I used to feel every time my speech wouldn't cooperate.

There's so much I value about desensitization, but lately I've been thinking about the inevitable risks we face in self-help and speech therapy, even when the goal is self-acceptance. For me, the notion that people who stutter can be good communicators was incredibly exciting. I continue to feel empowered when I list all the options I have while speaking: even if I'm not fluent, I can make "good" eye contact, listen well, express excitement about whatever I'm talking about, and communicate openness about my stutter. But the idea of a "good communicator" seems risky, and it's become important for me to remind myself not to overvalue "good communication." I worry that this phrase promotes a normalized idea of speech: one that makes room for stuttering, but only if it's surrounded by other qualities of good communication, some of which may be out of reach for many speakers.

So how can we push back that inevitable narrative of speech therapy--and disability-- that values overcoming? How can people who stutter keep from aspiring toward some model of speaking, without looking at the forces that shape the idea of "good communication?" I love many things about the idea that good communication doesn't mean fluency, but it's easy for this notion to go from being empowering to being another way that we tell ourselves that our speech is inadequate. Instead of failing at being fluent, I was failing at communicating well, failing at adequately owning my stutter, or failing at maintaining eye contact.

That's why it's so important for all people who stutter to become educated about disability theory: to consider the forces that normalize speech, and that require us to appropriately handle our stutter-- whether that means concealing it, regulating it with fluency-shaping techniques, or treating it with the proper amount of levity and openness. Without this dimension added to speech therapy or to self-help, the techniques we learn for "good communication" are just another form of easy onset. Both work toward standard speech without considering the forces that reject and stigmatize "bad communication"-- or disabled communication.

I'm still in speech therapy, and I still want to do all the things I wrote about above: stutter more easily, maintain eye contact, communicate openness. A lot of speech therapy, for me, is about fighting back against the techniques-- and shame-- I learned during fluency-shaping speech therapy. But, at the same time, I want to love my speech at all times: when I'm stuttering, when I'm blocking, when I'm using filler words, when I'm avoiding certain sounds. These habits may have come from a history of anti-stuttering therapy, but they're still a part of my voice, and a part of me. I went from hating myself when I stuttered to hating myself when I wasn't being a "good communicator": different scenarios, but the feelings that come afterward are eerily similar.

In both cases, I was failing the expectations of my listener: being awkward, vulnerable, visibly embarrassed, and, above all, unable to make them comfortable-- whether by achieving fluency, maintaining eye contact, or "communicating well." Is there a way to let go of the idea that people who stutter have an obligation to make their listener comfortable? To make these techniques an option, without making them an obligation? Along with openness, and easy stuttering, and eye contact, I want to look closer at "bad communication" and how it works-- because, even though it's "messy" (as Zach puts it in his blog post from September), it still communicates.

-Emma

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Stuttering and disability: Is one of these things not like the Other?

9/9/2014

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Ask people who stutter if they are disabled and you will get a wide range of answers: everything from indifference to political solidarity to indignation at being associated with them. The relation between stuttering and disability is not a peripheral issue. Rather, it shapes the nature of the stuttering community as we resist normalization.

In the most obvious sense, stuttering is undeniably a form of disability. Stuttering is a “speech-language pathology” studied by scientific and medical experts. It is even listed in the DSM-5 (the Diagnostic and Statistical Manual of Mental Disorders) for goodness sake. Our bodies are medicalized and treated as disabled.

More importantly, though, stuttering is an obvious disability candidate from the perspective of critical disability studies. In critical disability studies, what makes something a disability is the challenges faced when moving through an ableist world, and it is clear that stutterers are regularly discriminated against because of how we process spoken language.

Yet stuttering is nevertheless positioned in a curious gap between disability and abled-bodiedness. The stutterer is often understood as not quite fully abled or disabled. As I have  argued elsewhere:
Unlike the experience of being blind or deaf, stutterers are clearly expected to perform on the same terms as the able-bodied. No one would likely tell a quadriplegic to “walk already” or a deaf person to “listen up,” since it is understood that these actions are beyond their control. However, since a stutterer’s disability is not understood as absolute, since the stutterer is [seemingly] not really disabled, stuttering can evoke irritation out of listeners who wish that she could just “spit it out!” 
Stuttering is seen as something that is ultimately under our control, something that we could “fix” if we just worked hard enough. Put simply, stuttering blurs the line between disabled and able-bodied.

I think there are a few reasons stutterers often avoid identifying as disabled. The first is out of respect for people with “real” disabilities. Because stuttering is sometimes on the limit of what qualifies as disabled, and because we think of disability as a very bad thing, stutterers may not want to compare themselves to those who “have it worse.” Another reason is to avoid the stigma associated with disability. Disabled people are routinely cast as objects of pity and charity, and many stutterers do not want in on that party. And finally, unlike many other forms of disability, stutterers are able to “pass,” or hide their disability. When stutterers successfully pass, they dodge much of the ableism leveled at stuttering, making whether they are disabled a complex question.

I’d like to suggest, though, that distancing ourselves from disability and disabled people has two significant and dangerous effects:

1)      First, as the above quote indicates, no matter how proficient one gets at passing and/or using fluency techniques, playing on the terms of the able-bodied is a treacherous game. We will always be expected to speak by the rules of “normalcy” until normalcy is dismantled. No stutterer can be fluent all the time, and when one fails while passing-as-normal they fail hard. Claiming a disabled identity frees us up to speak on our own terms and by our own rules. I believe this is a far healthier way to live.   

2)      Second, and related, distancing ourselves from disability—saying “I am not like them”—reinforces the ideal of normalcy that affects us all. Put in different terms, all of us—blind, deaf, quadriplegic, epileptic, stuttering, bipolar, intellectually disabled—are oppressed by a shared logic of ableism. We are in this boat together and it is a hazardous mistake to think the oppression of those who are “really disabled” is not related to our own. The flip side to this point is that we need each other. Claiming a disabled identity and joining in solidarity with a larger disability community means that we can draw upon the resources of those who have been fighting discrimination for a very long time. Claiming a disabled identity means we can be part of a resistance against normalcy that is far bigger than stuttering.  

Let me end with a story. Last year I was sitting on the bus when a person who was intellectually disabled (ID) mistook my stutter for me being ID. In the past—in fact, for much of my life—I would have been horrified that others around me would think I was ID and would have quickly distanced myself from being like her. But it is the same ableist attitude that says it’s shameful to be ID that says it is shameful to stutter. So this time, instead of distancing myself, I happily took the ensuing conversation as a moment of kinship and as an opportunity to disrupt the ableism that structures both of our experiences.

-Josh
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“Marginalized People are not Revolution Objects,” or, on Being Generous with Stutterers and Firm with Speech Pathologists

8/28/2014

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If you’ve been following some of the recent discussions about speech therapy on this site and some of our other platforms, you may have noticed that we’ve been very firm in questioning speech-language pathologists about the validity of speech therapy, and at the same time we have said repeatedly that we are not opposed to stutterers seeking out speech therapy and want to leave room for that in our community.

I understand that this stance might seem contradictory, so I’d like to address our reasons for it. They could perhaps be best summed up in a phrase by blogger realsocialskills which we recently posted on our tumblr:

“Marginalized people are not revolution objects.”

The phrase is used to resist something that can happen within activist communities: Groups of marginalized people decide that they should not have to change their bodies or practices in order to accommodate ableist (or sexist, racist, etc.) social pressures. However, for many reasons, some marginalized people choose to continue to change themselves, and when they do so they can be judged by others in the community for “giving in” to ableist (sexist, racist) pressures rather than embracing their bodies as a form of activist resistance. 

In our context, this might look like attacking someone who seeks out speech therapy for not embracing their stutter.

Activist communities are capable of being just as exclusionary as the social pressures they are resisting, and this is not the sort of community we want to develop. Marginalized people are not revolution objects.

So I want to recognize upfront that there are many reasons people seek out speech-language pathology. I also want to recognize that my choice to reject speech-language pathology personally comes from a place of privilege. For one thing, while my stutter has led to a good amount of social shames and exclusions over the years, the tension in my jaw and tongue caused by my stutter has never caused me physical pain. For another, I am white and male, which can allow my stuttered voice to be taken seriously in ways that other stuttering voices may not be. I am otherwise able-bodied and do not have a parent or caregiver that opposes my stutter, or will speak for me if I can’t speak fast enough. The list could go on and on, because stutters are diverse and part of recognizing the ableism of our society is recognizing that not everyone will be affected in the same ways or to the same extents.

Others who do not have the privileges I do may still choose to reject speech therapy. And others who share my privileges might have their own reasons for engaging in speech therapy. That is okay, because dysfluent speakers are not revolution objects who needs to proudly stutter in every time and place—to be sacrificed for “the cause.”

This is what we mean when we say that people who choose to engage in speech therapy are welcome here. We are not here to police your body or tell you how you should speak. That is, after all, the entire point.

Yet even though some of us may choose to go to speech therapists to increase our fluency, or to learn to accept our stutters, we shouldn’t have to. As a community, we need to be able to decide for ourselves what role speech therapy gets to have in our lives, and that just will not happen when the entire discussion is dominated by the language and terminology of speech-language pathology and when able-bodied professionals continue to define our voices for us. We want to open up space to imagine a world that is different, a world where stuttering and non-normative voices can be heard and appreciated on their own terms. 

So I will continue to be firm in questioning speech-language pathology, because this is not their space. There are very important conversations to be had with speech-language pathologists in the future (as the thread on the forum has indicated) and we do want to keep these communication channels open, while retaining the right to discuss our speech on our own terms.

At the same time, we desire Did I Stutter to be a space where we are generous with each other and our specific needs, circumstances, and bodies. If we are moving forward together it is in stuttered and halting steps.

-Josh

2 Comments

Three Issues with Speech Therapy

8/17/2014

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PictureMore Foucauldian than indended
Let me start off by recognizing that speech therapy is an incredibly complicated issue. We want to make space here for those who desire speech therapy while at the same time being able to stand back and question some taken-for-granted assumptions. So I have a couple of disclaimers up front. First, these are simply some thoughts on speech-language pathology, not final nor sedimented beliefs. I am very much still working through this issue. Second, as the amazing disability writer and activist Eli Clare pointed out to Zach and I a couple months ago, speech therapy enables people with “severe” communicative disabilities to access education and (thus) other social opportunities that would be denied them otherwise. Because of these complexities, it is not our intention to dismiss speech therapy outright. However, we are nevertheless concerned with the way in which speech-language pathologists, even at their best, exert subtle yet very real power over people who stutter.

As the name suggests, speech-language pathology or speech therapy “pathologizes” our voices. In other words, these practices begin with the assumption that our voices are abnormal or deviant, and then medically intervene, either to increase our fluency or to offer therapeutic and emotional supports. With this in mind, I would suggest that speech therapy has three effects:

(1) Entering into a client/therapist relationship produces a specific kind of identity for the stutterer (in academic terms, it is a form of “subjection”). I enter into a relationship where I become someone who is pathologized. This is a relationship where a therapist has the authority to speak the “truth” about my body and my disability, which includes the seemingly obvious fact of my physiological/medical condition. At the same time, entering into this relationship limits the kinds of responses and control I can have over my body. Individual speech-language pathologists seek to use this authority in positive ways, and I want to stress that the vast majority of speech pathologists I have encountered in my life have been incredibly wonderful and well-intentioned people. However, this is not about individual intentions. As I have mentioned in another blog post, I just don’t think the medical, physiological difficulty of producing sounds is the best way to understand what stuttering is and what makes it a so-called “impediment.” Because pathologization is built into the client/therapist relationship—because my stutter is defined upfront as a medical issue that the therapist is given authority to help with—the option of deciding for myself that there is nothing wrong with my voice is severely limited.

(2) The client/therapist relationship is “depoliticizing.” That is, speech pathology assumes, and convinces stutterers, that what stuttering is (when we get right down to it) is an individual and biological thing. This process of medicalization covers over the ways that the very idea of normal and abnormal speech is produced by cultural values and expectations—and of course, by speech pathology itself. Because of this depoliticization, the stutterer is left with the belief that ultimately (a) stuttering is something that only I can manage (whether it be through fluency reduction or reducing avoidance, fear, etc.), (b) being able to communicate is primarily my responsibility, and (c) these are not political and social, but individual psychological and physiological issues. Speech pathology can thus distract us from getting at the root causes of our oppression.

(3) Speech pathology is a massive industry that makes money off of our bodies. Or, more specifically, it makes money off of pathologizing our bodies and reinforcing the idea that we, rather than society, are the ones who ultimately need to change. On an individual level this isn’t such a big deal. We pay people to provide us with services all of the time. However, stepping back a little and looking at the big picture, the speech pathology industry rests entirely on the assumption that our bodies require intervention. Besides traditional speech pathology, this industry includes pharmaceuticals, technology such as Speech Easy, psychology, neuroscience, and genetics. Contemporary speech-language pathology cannot therefore be separated from capitalism—or what has been termed “late capitalism.” There is big money being made by exploiting our bodies.

In my own life, I have found speech therapy both helpful and unhelpful. Even while it treated my voice as broken and needing to be fixed, it encouraged me to speak up in ways I had previously avoided, and I am grateful for that. Whether or not to participate in speech therapy is a personal decision, and if you choose to engage in it you are very welcome here. Our hope is simply that as a community of stutterers we can begin a critical conversation about the pathologization of our voices. 

-Josh

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Stuttering Pride

7/28/2014

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In her fantastic blog, "How to Stutter More," Emma Alpern, a person who stutters, writes: 
Stuttering more is about reclaiming stuttering. It’s about bringing stuttering into my speech rather than pushing it out. It’s about ending the cycle of interjections and the mentality that to stutter was bad— worse than anything else, worse than the restrictions and the interjections and the avoidance.
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I would like to join Emma in asking the very counter-intuitive question: why would I want to stutter more? It is true, as she writes, that intentionally stuttering desensitizes the moment of dysfluency and can make speaking easier. This is, however, the least important reason to stutter more. Emma continues: "stuttering more has helped me find a new way to talk: a way that was in me all this time, but that I had been struggling against for as long as I could remember."   

What does reclaiming stuttering look like?  

It means choosing what our stuttering voice means. It means denying others the power to define our voices as something shameful, embarrassing, broken, or deviant. It means, like Emma, finding new ways of talking that take our stutter as a central aspect of our voice.

I stutter more because I do not want to live in (nor help create) a world that normalizes bodies and discriminates against those who do not fit in. I take pride in my stutter as a way of resisting communicative expectations that are supposed to make me feel ashamed and are supposed to silence me. Stuttering more and stuttering proudly turns the tables on all those people who assume that, given a choice, I would rather talk just like them. 

I wouldn't. 

These are our voices. 

Deal with it.  

-Josh 

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Internalized Ableism, or, Why do I (Still) Hate Myself?

7/8/2014

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Ableism, as a reminder, is the discrimination against disabled people in favour of those who are “able-bodied.” Ableism, like racism or sexism, occurs on the individual level (e.g. when we get insulted or ignored in conversation because of how we speak) as well as at the structural level (e.g. society is set up in such a way as to disadvantage us and privilege those who speak fluently). Ableism is a complex thing that takes tremendous work and many years to fight against in order to create more inclusive and welcoming societies.

However, ableism is not just “out there.” It only works because it twists inside the people it targets, in our case, people who stutter. Ableism is internalized from an early age, as ableist assumptions take root in us and we begin to believe them to be true. Assumptions like: we must speak fluently to be taken seriously; we can expect to be made fun of and discriminated against (and there is really nothing to do about it); and, a stutter is not only a problem but is my problem. How many of these things do we simply accept as truth?        

These beliefs are, pardon my french, complete bullshit (poke around on our website to see our views on stuttering and ableism). I know this in my head. I know that stuttering is not really about my body and how it speaks, but about ridiculous ideas of what “normal” speech sounds like and cultural expectations regarding how fast and fluent everyone needs to be. I know that stuttering is more about society than about me.

But the thing is, no matter how disgusting and untrue ableist beliefs may be, over time they become a part of us.    

How do you root out a part of yourself?

We have lived with lies about stuttering for so long that making social changes to the world “out there” may be easier than not hating ourselves and our speech--those quiet whispers that tell us the negative ways people respond to stuttering really is our fault. A central part of reframing stuttering and resisting the medical model is going to be dealing with internalized ableism and changing ourselves. This is difficult work, but I believe it is possible to overcome these lies about ourselves.  

What can we do about internalized ableism? I am certainly no expert as I am still working through the process myself, but here are two ideas:

1)      Education—while this ultimately isn’t the most important one on the list, it is still central. I believe it is difficult (as I mentioned in another blog post) to change ourselves in any lasting way when we still accept the medical model of stuttering: the belief that stuttering is a biological and physiological thing. We need to understand ourselves in other ways that shift the focus away from our bodies and onto social discriminations and ableist social expectations. Sadly, the overwhelming majority of stuttering literature assumes the medical model. This needs to change.     

2)      Community—we need communities that affirm and encourage dysfluent speech. We support self-help groups, but we also need communities that are not based in medical-models of stuttering; communities of dysfluent speakers that can encourage one another enough to imagine their stutters not as individual problems to cope with, but as important and diverse voices in the world.    

-Josh

2 Comments

Did We Stutter?

6/23/2014

1 Comment

 
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Among all the things that stuttering is, it is perhaps first a break in communication. Stuttering is an interruption in the regular flow of how words are pronounced--and, just as important--how words are processed by those who are listening to us.  

I had a job spraying weeds two summers ago and worked with a guy named Mike: well acquainted with everyone, a story always perched on his tongue, and three decades an employee. Parked in a dusty, stale truck one afternoon, Mike and I were waiting out a bout of rain when it happened. Near the end of my somewhat elongated sentence, he snapped to attention with a simple “huh?” I painstakingly repeated myself, trying not to stutter, and again, “what?” This happened several times. While I had been working intensely at speaking and being understood, Mike had put no effort into listening, hadn't even bothered to try. This moment was filled with the sudden and overwhelming realization that I do not, and cannot, stutter alone. Stuttering is rather accomplished between a speaker and a hearer. Or, if one wants to insist that stuttering is a breakdown of communication, it is a breakdown that occurs between the speaker and the hearer. 

If this is true, then why do dysfluent speakers bear the entire load of responsibility for "breaking" communication? Why are we taught to feel ashamed when it takes a little longer to communicate? Why are we taught to loathe our speech (and very often, ourselves) because others don’t want to take a little extra time and effort to listen? If communication is an interaction between speakers and listeners, then the stutterer alone should not be marked as abnormal and disabled. There is a real sense in which listeners who “disable” our speech by refusing to take responsibility for their role in communicating are the “faulty” communicators. We communicate together; and we stutter together.      

In that spray truck two summers ago, for the first time instead of feeling shame for my stutter an entirely unfamiliar response was welling up: anger at being ignored, anger at being excluded.

The realization that it takes two to stutter announced a shift in how I would understand my disability and the response of others to it. I realized that stuttering and the shame it caused me could not properly be explained by the mere physical difficulty of vocalizing certain words. Realizing that my manner of communicating is interpreted as abnormal and as a disability by others because it conflicts with a particular set of values and social structures, I came to  understand that stuttering is not primarily about me speaking “wrong,” but is rather a form of ableist discrimination. This realization allowed me to reinterpret much of my previous experience, as well as my current identity, relationships, and goals. To say this was empowering would be an understatement.

-Josh

1 Comment

Stuttering, Science, and You

6/10/2014

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"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

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