Put simply, our society is built for able-bodied people and it resists any change at every step of the way. The ADA has been in place for 25 years and our society still does the absolute bare minimum to make our world inclusive and accessible for disabled people. For example, businesses don’t want to spend money to renovate their buildings; they regularly change just enough to squeak past building codes. Or to take another example, we still think of disability as an absolute tragedy, so much so that people regularly report that they would rather die than end up in a wheelchair/become blind/deaf/etc. etc. Behind the thin veil of inclusiveness, we as a society do not like disability and do almost anything to avoid it. “Do we really have to include them?” is an uncomfortably common sentiment I encounter. People fawn over disability when it makes them feel inspired (see picture), but as soon as they realize just how much our claims for justice will require of them, their inspired smiles sour. 

To create social change is thus not simply about educating people, since education in itself means we are dependent upon the kindness and generosity of others. You can ask people nicely not to finish your sentences and explain why it is infantilizing, but that leaves it up to their good will. As every liberation movement of the past century has shown, social change requires something more: a change in power dynamics that transforms the relations between people. In our context, this means transforming how abled people relate to disabled people (in ways that are less oppressive), how abled people relate to each other (in ways that disarm ableism and make space for disabled people), and how disabled people relate to each other (in ways that affirm solidarity). This is especially true for stuttering since, as I have suggested earlier, it is a distinctly interpersonal experience. Speaking on our own terms thus requires educating people as well as shifting the terms—shifting the power dynamics—on which we get to speak.  

This brings me back to the issue of anger and communicating hospitably. Against our sometimes common-sense intuition, I believe that communication is not primarily the act of swapping information between our heads, but is a way of relating to and changing the relationships between one another. Communication connects us to each other, and depending on how we communicate, we can establish very different kinds of relationships between people.

However if communication is a way of relating to one another, it is also about power. It is no secret that we assert power over others through communication. We regularly change how people act and think about themselves and others through the way in which we communicate—not only what we say, but, for example, the underlying tone we use, the context in which we say it, and who is involved in the conversation.

So if communication is more about modifying how we relate to each other than simply exchanging information, and if we understand social change to require transforming the relationships between people rather than simply educating them, the importance of how we speak and write about stuttering with others takes on a new flavor.    

I want to talk about communicating hospitably, and I want to use it in the place of words like “empathy,” “kindness,” “and “compassion.” These words so easily force marginalized people to be “respectable” and “civil” if they want to be taken seriously. In other words, we are forced to speak on the terms of ableism. Communicating hospitably is rather inviting others into our home, into our way of communicating, our speeds, our styles, our rhythms of communication. Communicating hospitably is, moreover, to communicate on our own terms and welcome others to explore this world with us. This means that yes, we need to make space for them and help them find their way within our world. But it does not mean that anger and hospitality are polar opposites, nor that anger not is not at times an appropriate response to how people treat us in our home. In communicating hospitably we are seeking to change the relationships between people, not just invite them in so we can funnel information into their ear.

If someone interrupts my sentence, I hospitably invite them into my communication by finishing my sentence anyway. If they continue to do so, a more direct—“why are you cutting me off?” may be appropriate. Many people will learn how to listen in less ableist ways with polite explanations or reminders. But if I have invited someone into my home, into my rhythms of speech, and they refuse to treat those rhythms respectably, I can’t simply assume it’s because I haven’t asked nicely enough. In this regard, there are times when people will still try and force us to speak on their own terms—make us feel ashamed or embarrassed of our stuttering—and thus recreate an oppressive relationship. It is especially in these times that getting angry is an appropriate way of resisting oppression. When this happens I love to look people straight in the eye as I stutter, my tongue protrudes, and syllables spill out of my mouth, daring them to either listen up or walk way.

Stuttering with hospitality means generously inviting people into my speeds and rhythms of speech. It also means that I refuse to speak on the terms of ableism. I refuse to make that kind of world my home. 

-Josh

It’s been a few weeks since International Stuttering Awareness Day, when Honest Speech was shared by Upworthy. When I chose to perform this poem at the National Poetry Slam in August I never imagined it would reach an audience of this size. While I’m incredibly proud of the poem, and thankful for the video that connected me with Did I Stutter, it is also unsettling to see my work passed around the Internet in ways I can neither predict nor control.

My love of poetry slam comes from the control it grants its performers. For the three minutes I am on stage, I am the loudest thing in the room and I do not fear interruption.  The stage, the spotlight, and the microphone all afford a performer the privilege of being heard, which allows more energy to be focused on the content of communication. Onstage I present a nuanced, impassioned argument in a way I am unable to in daily conversation.

In going viral, control and nuance are lost. A performance that was full of rage in the moment becomes a cute or interesting video passed around social media.

The response this poem elicits is telling. The comment section of most viral poetry videos is lousy with hate speech, but not mine. I expect to receive negative comments, but for the most part I really haven’t. There’s the poet who accused me of faking my stutter for the sake of performance, and the commenter who thought I was lazy for not pursuing fluency, but that’s really the extent of it.

And that bothers me. People aren’t getting angry with me, or disagreeing with my work, because they fail to understand the message I am trying to communicate. The consensus among Youtube commenters isn’t that I am a poet writing about stuttering, but that I am a poet despite stuttering. My work is presented as demonstrative of strength and perseverance in a way I really don’t believe is warranted.

The term “inspiration porn” refers to this extremely common response to disabled self-expression, in which stories of disabled people excelling in sports, art, or even just performing daily tasks, are marketed for the consumption of the non-disabled. This rhetoric - that it’s inspiring to watch someone overcome hardship - is incredibly infantilizing and reinforces the essentialist notion of the disabled as irreparably different.  

Watching the work I intend to be angry and radical used in this way is frustrating, to say the least.  Some incredible conversations within the speech community have come from this video, but it’s also tagged as “daily motivation” on diet and exercise websites alongside such gems as, “This man has no arms, no legs, and an amazing attitude!” Recently, I was compared to a dancer with lower limb difference. As in: “Look at the speaker with the broken voice! Look at the dancer with the broken body! Gee, it’s just so inspiring!”

When Honest Speech was posted to Upworthy, we submitted the contact info for Did I Stutter to be linked under the video. If you look closely, the post also links the National Stuttering Association. This isn’t information we asked to be posted nor were we consulted on it. On the surface, it seems like a simple choice to reference the largest national group relating to stuttering. And while our work aligns with the NSA in some ways, conflating the two because they have stuttering in common fails to recognize that our message and mission are nuanced. It fails to recognize that we, as stutterers, have something specific to say. The simple fact that we are speaking while stuttering isn’t the point.

I don’t know how to respond to these people. I want to be angry with them, to explain why their well-intended comments are offensive. I want to re-assert my control. But that works a lot better online than it does in the workplace, the classroom, or while crossing the street. I appreciate the irony here, that a poem I wrote to celebrate my difference is being used to further oppress disabled voices.

When I choose to use this poem in competition, I’m not seeking pity from the judges. I didn’t write it because I thought it would score well. I wrote it because I own a marginalized voice. I wrote it for the kids who have been taught that there are parts of themselves best kept hidden. I continue to perform it because it is an authentic expression of my experience in reclaiming dysfluency.

In performance, I can’t control the way an audience interprets my work, but I can choose the way I present myself. Which is to say, I will always be angry. I will always be proud. I will always be honest. 

-Erin

This website a breath of fresh air. People who are viewed primarily as patients or potential patients are protesting publicly here. Yes! I already knew you were protesting in private. I know, because I protest too. In 2009, I got a masters in speech-language pathology. But before I started my first job, I had a huge bike wreck that sent me to cognitive rehab. To this day, I've been introduced at events as a "TBI patient," though my last rehab session was over three years ago. My protest boils beneath the surface: I am a person, not a patient.

That's why I support your protest, even against speech therapy. I've heard researchers talk about the utter tragedy of the child who doesn't learn to curb stuttering. The tragedy is the child won't communicate like a "normal" person.

I know that's only one camp of stuttering therapy, but it's not as radical as its detractors might think. What about the original speech therapy work? Practice your R until it sounds like my R, make your lisp go away. Why? So you'll be more socially acceptable. Unless we ask the world's listeners to be more accepting of non-Rish Rs and lisps, we're saying the problem lies solely in the individual. That's the ableist rationale historically underlying speech therapy.

Even Charles Van Riper's deeply personal speech therapy techniques included learning to sound more like the status quo. His work was born of lifelong shame about his speech, which makes it wonderfully insider. But to isolate the stutterer in a clinic room to fix his problem puts all the responsibility on the stutterer. Where was the scrutiny of society for shaming Van Riper? Where was the clinic room that taught family, friends, teachers, and employers to not be annoyed or entertained by stuttering? A patient needs to fix their way of being, and everyone else can chill out and wait for the patient to come around? Ableist.

The field has progressed since then. Some speech therapists work in a way that holds patients as valuable and valued people as they are. But the legacy of the field's roots don't go away. So here are my own protests.

I am not a stutterer. Thanks to some traumatic brain injuries, I know a physical experience and sudden terror of being trapped in a block or repetition. I've never faced the insistence that I should be ashamed because my neurogenic stutter lasted a few months in 1999 and has come back only intermittently with subsequent hits to the head.

I have other impairments. Similarly to stutterers, folks with brain injury receive public praise when we bust our asses and get better in rehab (though level of ass-busting is not correlated to level of betterment; not that I can convince the public or most providers of that). Also, we're considered self-centered and missing the point if we refuse rehab.

I refused some rehab because it was aimed at my assimilation back into normalcy. Why speech therapists hold normalcy as an ultimate goal for people with impairments, I'll never understand. My rehab wasn't aimed at helping society flex their standards so I could coexist and be given opportunities despite my odd communication and behaviors. It was all me and my problem. So I dropped out.

I know nowadays some brain injury rehab focuses on community re-integration and training communication partners. But that's not what I was given. I was handed to a speech therapist who paid no attention to my emotional experience of being in her clinic room or what I actually wanted her assistance with. The clinician determined what she felt I was bad at and set to work fixing me. Literally screaming and sobbing did nothing to get her to pay attention to my rehab goals. I know because I read my chart notes after I left. She didn't document my protests, and she downplayed my impairments, even the ones she was trying to cure. Classic. Disabled people are unreliable reporters of their own needs simply because they are disabled. Best to just leave it to the experts.

Rewind to grad school. I was training to become an expert. I worked with a teenager who had been taught by a speech therapy student before me to say "Sorry, but sometimes I stutter" by way of introduction. That grad student had told me privately that she felt sorry for this client because of her speech. No wonder she trained the teen to apologize for her own presence and desire to communicate! Gross. In our time together, the teen and I worked on acceptance and pride, raising her awareness of speech production, some fluency shaping, and reflecting on maybe not apologizing. I kind of hated having to undo the prior speech therapy student's shaming. I wondered how often this would come up once I graduated and became an SLP.

So when I became a patient after I graduated and had to live on the other side of the clinician-patient relationship, I left the field. I cannot be in that dynamic with someone else. I cannot draw a paycheck from reinforcing the idea that “you communicate abnormally and should communicate more like I do so that you'll be a valuable person.” Despite the great work of some progressive researchers and clinicians, many are still more concerned with changing patients so that others are more comfortable around them than really uplifting people. 

Anyone who truly values stutterers and people with brain injury must learn to temper their defensiveness when we step up and say no. To call speech therapy ableist is not an attack on individual speech therapists' value as people. Rather, we protest the insistence that only certain people must fix, cure, or correct an aspect of themselves in order to be appreciated as full members of society. In the relationship between client and clinician, the clinician has more power. Speech therapists, please don't be hurt when the person with less power wants to voice their reality and assert their humanity. After all, isn't that why people want to become speech therapists? I thought that was why I joined the field, but I could not make it work. So, I join the public protest in solidarity.

-Cheryl

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”