The Did I Stutter project works very hard to show that social discrimination rather than bodily defect is at the heart of the “problem” of stuttering.

The sound of my voice is different, but there is nothing about that difference which makes it inherently bad or unfortunate. It is only because our society has labelled difference as disorder, stuttering as ugly and unwanted, that my voice becomes a medical or pathological problem to treat.

The idea that our society rather than my body lies at the heart of my struggle—that I should spend my time fighting discrimination rather than wrestling my body to be more fluent—has been treated by many as absurd.

It’s simply taken as obvious that stuttering is a bodily defect rather than a social issue.

But back up to the beginning of speech correction in the early twentieth century, and look at the way many of its proponents framed this supposed defect:

• “There is an essential economic need for speech-correction work. Unless these speech defectives can be retrained so that they will be able to fill an appropriate place in the industrial and professional world, society will continue to suffer an economic loss because of them.”1
  
• “Recognizing the social economic value of speech, it is patent that the attainment of fluent unimpaired habits of speaking represents a distinct gain to the community. The value, therefore, of speech correction would be represented by the saving to the community of expenditures now involved as a result of existent or future speech defects.”2
  
• “The Government has recognized this menace by refusing to permit immigrants who stammer to enter the country, because of the great probability of their becoming public charges.”3
  
• “Miss Wells discussed the role of the speech correctionist in the unifying of public sentiment and the promotion of Americanism through the elimination of foreign accent, thus bringing about a more homogeneous American speech.”4
  
• “Each inarticulate citizen is a weak spot in our defense against un-American propaganda and in our development of efficient democratic procedures.”5
  
• “The War Committee of this association found that able young men were handicapped in the discharge of the military obligations of citizenship, were unable to qualify for commissions because of voice and speech defects.”6
  
• “If nothing is done to correct their condition, thereby establishing mental stability, what is the result? Such children help to fill up our vast army of truants, delinquents, vagrants, and gangsters. From a weak, good-natured child is evolved a child on the road to criminality.”7
  
• “It is not by chance that the incidence of speech defects is higher in penitentiaries than anywhere else except in the institutions for the mentally deficient.”8
  
• “‘Living at the tips of one’s nerves’ through an impediment of speech tends to develop vicious circles of nervous instability resulting in an increase of criminals, prostitutes, and general failures.”9
  
• “Plans are under consideration whereby the board of education will provide in the very near future for its thousands of children suffering from defective speech, thus wiping out all handicaps and setting a standard for normal American children.”10
  

The quotes could go on for pages upon pages.

The point is, stuttering was regarded as a medical defect to fix precisely because it was a social problem.

Education, medicine, psychology, and speech pathology all turned their attention to developing treatments for abnormal speech precisely because it posed a problem to society. It cost society money. It damaged national unity and identity. It could lead to moral degeneracy and criminality.

From the very start, the “medical model” grounded itself in the social. The treatments developed to fix dysfluent speech didn’t legitimize themselves on the objective “fact” of our pathological condition; they legitimized themselves by showing they were providing a social service. “Facts” always come second.

So when I say that stuttering is a social problem, I am not saying anything groundbreaking. I am saying the same thing speech correctionists themselves claimed as a basis of their discipline. When I go on to say that the reaction to stuttering should therefore be to change society rather than to change my body, I am not rejecting a somehow obvious “truth” that my body contains a pathological defect. I am rejecting the brief interlude medicine, science, and psychology have offered in reaction to the social problems caused by stuttering. I am suggesting we back up, look at the world that refuses to accept us as we are, and make the cultural changes that should have been happening all along.

My voice was treated as broken precisely because society was structured to exclude it. It’s time to fix that. Not me.

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

1  Charles Van Riper, a pioneering speech correctionist described as having had the most influence of any speech-language pathologist in the field of stuttering, in “Speech Correction: Principles and Methods,” 1939.

2  Dr. Ira S. Wile, Physician and commissioner of Education in New York City, in “The Economic Value of Speech Correction,” 1916.

3  Frederick Martin, of the New York board of Education, in “Stammering,” published in the Quarterly Journal of Speech in 1919.

4  Recorded by Katner in “The Speech Clinic as a Social Agency in National Emergencies,” describing a symposium at the convention of the National Association of Teachers in 1940.

5  M. R. Traube, Dean of the School of Education at Pennsylvania State College, in “Coordinating Professional Responsibilities in Speech Correction and Speech Education,” published in the Journal of Speech Disorders, 1941.

6  Edward Charles Mabie, head of the State University of Iowa Department of Speech, in “Opportunities for Service in Departments of Speech,” 1920.

7  Dennis J. McDonald, Fellow of the Academy of Medicine, New York, in “Speech Improvement,” 1916.

8  Avis. D. Carlson, an American writer, in “Crippled in the Tongue,”1937.

9  James Sonnett Greene, M.D., Director of the New York Institute for Speech Defects, in “The Mission of the Speech Specialist,” 1916.

10  Again, Dennis J. McDonald, Fellow of the Academy of Medicine, New York, in “Speech Improvement,” 1916.

Did I Stutter is a disability and stuttering pride community. We want to reclaim our bodies and voices, taking pride in them just as they are. But this statement contains an important question that we have never clearly addressed: exactly what (or who) are we reclaiming our bodies from?

There are probably many ways of answering this question but one in particular seems especially helpful. Taking back our speech means learning to tell liberating stories (or narratives) about stuttering—stories about what stuttering is, how we should “treat” it, and relate to it. The problem is that society is already saturated with competing and ableist narratives about stuttering. Reclaiming our voices thus requires that we learn to tell “counter-narratives” that (1) reject dominant narratives about stuttering that pitch it as disorder and a source of shame, while (2) replacing these with narratives of our own. 

I believe the central narrative supporting our ableist, cultural understanding of stuttering is that when we get right down to it, stuttering is a medical and scientific condition that should be treated as such. This narrative has become so engrained in our thinking that is nearly impossible to question.

What, for example, is stuttering?

According to the dominant medical and scientific story we have all come to accept as (capital-T) Truth, stuttering is simply a communication or neurological developmental disorder or pathology. Researchers and clinicians may not agree on the specifics, but everyone believes that stuttering is at core a medical and scientific condition.   

How does one treat a medical disorder? Through medical means such as rehabilitation; psychiatric treatment; pharmaceuticals; or, in the future, gene therapy.     

I, for one, am absolutely sick of hearing my speech glibly described by medical and scientific experts as a “disorder.” Medical-scientific experts may claim to possess the truth of stuttering, but I don’t recognize their authority over my body and I call on others to reject it as well.

This is all to say that one of our goals at Did I Stutter is to offer a counter-narrative to the medical and scientific story (or what we have in the past referred to as the “medical model”). Our counter-narrative is in many ways extremely simple: the medical model seeks medical solutions for social problems. 

The medical-scientific world loves to “solve” social problems (in fact, many have argued that this is exactly what the modern institution of medicine was developed to do). Nineteenth- and twentieth-century history is rife with examples of medical and scientific institutions and practitioners diagnosing social problems as medical with often terrible consequences. Allow me to outline just a few:

• An estimated 25% of women in the mid-nineteenth-century with symptoms of nervousness, hallucinations, and “abnormal” sexual appetite were diagnosed with “female hysteria” and subsequently treated in interesting ways. Turns out hysteria was just the medicalization of sexist beliefs about women. 

• The presumed rise of poverty, criminality, and “moral degeneracy” in the early twentieth century was addressed by diagnosing, institutionalizing, and often sterilizing portions of the population deemed unfit to bear children. Between 1907 to the 1970s,  in the US alone an estimated 60 000 people were sterilized. This blight on our (near global) history is called eugenics and its legacy remains with us today. 

• Up until 1980 (with the introduction of the DSM-II), homosexuality, or “sexual orientation disturbance” was considered a psychiatric disorder. Turns out society was just homophobic. Against those who would argue that this medicalization was an unfortunate artifact of the past—just “bad science”—it is worth remembering how far we have (not) come. Transgender people are today diagnosed with Gender Identity Disorder (and require this diagnosis for treatment and in many cases legal recognition), and intersex conditions are likewise heavily medicalized with disastrous effects. Finding medical solutions to our social discomfort with gender non-conforming bodies is still big business. 
  

All of these medicalizations shift attention off the social forces that produce the so-called problem in the first place. Often, the only problem is simply that people believe there is a problem. Medicine and science rush in to ease society’s anxiety with difference not by challenging us to embrace differences that we may not understand, but by labelling ‘different’ as a disorder and thus seeking to eliminate it from our bodies. 

Stuttering is not a medical disorder. Like the other things on this list, and like other forms of disability reclaimed by disability rights movements, what we call stuttering is simply a form of human variation—in this case, a different way of speaking. It is the medical and scientific narrative that has labelled this different way of speaking “abnormal” in order to (1) claim authority over our bodies and (2) calm our anxieties about people who are different.

The social problem of stuttering is the fact that we live in an ableist world uncomfortable with disability/difference. The social problem is that stutterers have been taught to hate and be ashamed of how we speak. The social problem is that people take time to listen to long-winded speakers but not to stutterers. The social problem is that stutterers are denied access to parts of society and are not treated as full citizens simply because our speech is dysfluent.

Seeking a medical solution for these social problems is not just an epic adventure in missing the point. Rather, scientists and SLPs who try to fix the social problem with medical tools are reinforcing the harmful narrative that our bodies have a disorder and thereby make it harder for us to take ownership of our speech.

Better evidence-based research, larger sample sizes, or advancements in neurophysiology and genetics will never liberate us from our oppression as stutterers. The problem is not that the science or clinical practices aren’t yet good enough. The problem is that stuttering has never been a medical and scientific problem.

It’s like trying to put out a fire with gasoline.

Medical-scientific practitioners need to realize that for better or worse, they become complicit in our oppression through the narratives they perpetuate.

“Disorder.”

“Treatment.”

“Risk.”

However, we all need to stop parroting stories that treat stuttering as something medical and scientific. And most importantly, we as a community need to learn to tell new stories that can imagine stuttering differently. My stutter has never been a disorder—it cannot be diagnosed or fixed. My stutter is how I talk. My stutter is the particular rhythms of my voice: unpredictable, dramatic, emphatic, unique. Stuttering our own stories about our voices is how they will be reclaimed. 

-Josh

I recently wrote a guest post for the Inandem blog run by two very cool SLPs who are down with stuttering pride. Here is part of it, on the history of disability rights and what this has to do with stuttering:

"Gaining their momentum in the 70s, disability rights activists and theorists have insisted that what we understand as 'disability' is not primarily a medical but a political issue of inclusion and exclusion. Human traits are tremendously varied – eye and hair color, bone structure, height, physical and mental capabilities. So why, disability politics asks, are only particular forms of variation marked as “'abnormal'?

The short answer to this question is that the very process of categorizing bodies and human traits in terms of normal/abnormal or abled/disabled is deeply informed by cultural, economic, social, and political values. For example, despite progressive legislation we still erect inaccessible buildings and transportation systems that 'disable' wheelchair users and deaf or blind people. Architecture that excludes certain types of people is a reflection of what and who we value as a society. Disability activists and theorists thus argue that (to varying degrees depending on who you ask) disability is not an individual and biological condition, but is a complex interaction between bodies, cultural values, and social/economic structures. 'Abnormal/normal' and 'disabled/abled' are, therefore, first and foremost political categories used to construct our world in oppressive ways. Because of this, disability rights movements refuse to believe that disability is fundamentally a medical issue, and instead see it as a matter of civil rights and justice. We demand to be included in society as equal participants just as we are. 

Yet up until late, there has been very little attention to stuttering and communication disabilities within disability studies and activism. . ."

Read the rest of the post here.  

-Josh

I, like many stutterers, have spent a long time feeling embarrassed of how I talk and who I am, and feeling guilty for making people uncomfortable. I lived in constant fear of my tongue which might at any moment derail—producing a tortuously slow trainwreck of gapes and grimaces, dragging behind them embarrassed glances always ending in shame. 

For this fear I spent half an hour every morning rehearsing fluency at 60 SPM: “wheeen the suuunliiight striikes raaindrops iiin the aaAir . . .” I was determined not to let stuttering hold me back – “I CAN ACHIEVE ANYtt-----ttTHING WITH PERSISTANCE!” Yet perhaps it would be better to say that I simply feared my mouth once again swelling shut with shame.

My speech pathologists taught me self-acceptance. Self-love. They told me it didn’t matter what other people thought of me. I should just ignore them. “They’re ignorant,” I was told. Sunday School taught me to forgive those who mocked me. Let it go—they’re not worth your time.

The one thing I was never told that was that I could get angry. Fucking angry.

Fury is a proper response to injustice and oppression, to silencing, stereotyping, and co-option. All emancipatory movements of the twentieth century—civil rights, disability rights, feminism, and queer liberation—have been fueled by anger focused into resistance. As the legendary Audre Lorde writes, “Anger is an appropriate reaction to racist attitudes, as is fury when the actions arising from those attitudes do not change.” [1] For so long, disabled people have been treated as objects of charity and welfare, expected to accept the scraps society doles out with a thankful tear in our eye. In contrast, the disability rights movement teaches us to “piss on pity” and be outraged at our exclusion and marginalization.   

So where the hell is the fury in the stuttering community? We are jesters in music and film. People mock, stop, and dismiss our words. We are inspirational when we overcome our “tragedy” and lazy when we do not. We are regularly not treated as equal citizens, denied time, jobs, and respect. I should be livid when your discomfort makes me hate myself. When you tell me to sit down halfway through my class presentation. When you don’t absorb anything I’ve said because you’re too busy feeling sorry for me. When you medicalize my body and claim to be the expert on my speech. I should be outraged at everyone who helps, in a million little ways, to create and sustain a world that oppresses dysfluent speakers.         

Yet for all of this the stutterer is trained (with stickers and (social) gold stars!) to be mild-mannered and submissive—to accept ourselves. Does no one find this absurd? This is domestication, not liberation! We as a community are far too easily satisfied. Oh, it’s certainly permissible if I occasionally get angry at myself, if it leads me to work harder and persevere. But direct that anger towards the world? Ruffle some feathers? Dare to make our frustration political? All of a sudden we are stuttering out of line. All of a sudden we are unruly, dangerous.

(We will not, by the way, be towed back in line through claims that we’re just playing the victim card or being lazy. In every movement, these have always been cowardly responses used to maintain the status quo.)     

Here’s what anger does. It focuses us. It enlivens us. But most of all, it centers attention where it needs to be: on the injustice of the stuttering experience. My tongue is not the problem. My tongue has never been the problem. Getting angry lets me remember this.

Anger is a rallying cry. In the fight for gender equality, anger remains a driving force behind suffrage, workplace equality, and bodily autonomy. In the civil rights movement, anger fueled leaders from Martin Luther King, Jr., to Malcolm X, to Audre Lorde in rallying the multitude and making sure they will no longer be ignored. Anger continues to be a life-giving force in the face of marginalization, as, for example, recent events in Ferguson have shown.

In the disability rights movement, anger forces those who are “abnormal” and subhumanized to be confronted, at least for an instant, as persons. When those who are institutionalized without their consent, medicated against their wishes, isolated, ignored, diagnosed, stigmatized, rehabilitated, sterilized, denied education, criminalized, and left in poverty with no escape beyond the bureaucratic welfare and intermittent charity of those caregivers and systems disabled people too often find themselves utterly dependant on, anger is a lifeline in demanding that injustice be recognized and that oppressed peoples be heard on their own terms. Anger is a bastion for communities who refuse to simply smile and be grateful. Anger fuels change. 

Anger can be this for stutterers.

It’s time to take back our speech.

-Josh

[1] “The Uses of Anger: Women Responding to Racism”

My dad is a stutterer, like me. This could mean a lot of things and it does. He was, what you might call, a first generation dysfluency activist, he organized support groups in Miami Florida for stutterers.

This fact, and the facts of his family's very obvious condescension toward him for his stutter have haunted me for quite some time and my involvement in this website is indeed the culmination of that haunting.

My dad is a social worker. I do not always approve of this line of work because I am a mad person and I hear the way he talks about his clients in a less than equitable manner. I hear how he judges his patients behaviors and determines when they need to be fixed.

I am fortunate that he is alive today. I am lucky that I have an (admittedly medical model) activist family member with a similar disability to me who has responded to the myriad microaggressions that one faces for being dysfluent with extraordinary forgiveness and love for those around him.

My reaction to some of these interactions has always been rage. I have not been able to excuse this series of minor moments of ableist shrapnel, that continually fly as I speak.

When I was a teenager, I was very angry at my father for letting people walk all over him. I thought he was a terrible male role model. I always felt lacking for my not being more of a conqueror and a patriarch. But in fact this lack, this extra caring, it was and is a gift.

My father's devotion to caring for people. My father's never-ending practice of forgiveness. They teach me how to be a better person. My dad is a good person, perhaps purely in an interpersonal manner, but that is a valuable trait.

Activism and speaking up for ourselves and against subtle ableist microaggressions doesn't have to be a practice in reactive aggression and anger. Activism can be born of a sense of interpersonal love, for ourselves and for our people but also for the ideal that many in our society aspires to.

My style is more disruptive than my father's. I convince people by trying to shock them. We disagree with him on methods. But there's a lot that one can learn from him and his generation of dysfluency activists.

-Zach

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:

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

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

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

"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