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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
Rob Dellinger
11/4/2016 07:17:33 am

Erin, I am a stutterer and a school-based SLP, as well as a member of NSA and a part of other stuttering communities. Like many SLPs of my generation (I just turned 50), I am relatively new to the Disability Rights Movement as it relates to stuttering.

Perhaps that's why I am not fully understanding your anger, and the problem that you appear to have with speech-language pathology and SLPs, and "people who stutter", here. Please help me understand. I am listening.

In deriding speech-language pathology and SLPs for enabling the "blatantly ableist language" that you overheard at a stuttering self-help support group - and I grant you, some of it wasn't nice - isn't that a fancy way of saying that anybody who disagrees with you, or has a different point of view about stuttering, is wrong?

You complain that "Stutterers tell me that they’re not disabled because they can overcome their dysfluency." Aren't these stutterers exercising the very same right of choice that you yourself asserted that they had ("Identifying as disabled is a personal decision that should be the right of all stutterers")?

You assert your right to identify as disabled and stutter openly; don't other stutterers have an equal right to identify as not disabled and to "use speech tools" to "overcome their dysfluency" as they see it?

I am having trouble understanding your objection to stutterers, or rather, people who stutter, using "person-first language to assert that they are whole, un-afflicted persons when removed from their speech." In addition to being a person who stutters, I am also a person who has other chronic conditions, including hearing loss and tinnitus. Should I identify as a hearing losser, and a tinnituser instead? Personally, I don't think so. I know stutterers who have "stuttering pride," and others who describe their "recovery from stuttering as a person," if not totally from the condition. Would this offend you personally? I hope not, but I think so. All of these stutterers would be equally welcome at our self-help group. Would I be welcome in your world? You are welcome in mine.

You describe your pride in embracing stuttering and finding your authentic voice. You like the way you talk. (I have heard your spoken-word poem; I was in awe, and I liked your voice, too. I promise you, I would never, ever, wish to silence it). I am happy for you. As for me, I don't particularly enjoy my stuttering or prefer it, so I try to speak fluently when I can, which isn't always. Are you happy for me?

Would you judge me for "blending in" or being "deceptive" in "passing as fluent"? I hope not. I don't see it that way at all. It feels more like I'm honestly aligning the way I talk with the way I wish to. Can you make room for me?

Perhaps I am missing your point entirely. You folks at DIS are starting a movement - and I imagine it takes relentless determination, and blazing anger, to start a revolution.

I imagine eventually - and I don't know, today may not be that day - we will all begin to look for, and find, some common ground.

When the dust begins to settle, I hope you'll begin to see me not as an enemy, but as your friend.

And a fan - your poem was one of the most beautiful things that I have ever heard.

All the best,

Rob




Reply
Anna
11/6/2016 11:36:05 am

Seems to me that this blog has always been very careful to not invalidate the experience of any group of stutterers, or silence any particular opinion coming from a stutterer about how to respond to stuttering. If you read through the blog you will find they explicitly say that many times.

Reply
Rob Dellinger
11/7/2016 08:13:57 am

Anna, thank you for expressing your viewpoint and giving me a broader perspective. All the best,
Rob

Erin
11/7/2016 03:26:28 am

Rob,

Thanks for your comment. The critique I am making is of the dominant narrative of stuttering - the same narrative used by the NSA and self-help movement, and the same narrative that you are describing in your own views. It's not necessary for me to validate your opinions, because they are already seen as valid in the medical model. What I am challenging is not the viewpoints of individuals including yourself, but the larger forces that hold dissenting opinions as invalid.

Best,
Erin

Reply
Rob Dellinger
11/7/2016 08:06:26 am

Erin, thank you so much for your reply. I do not quite know what to say. I am fairly new to DIS. The messaging from DIS can feel quite sharp toward SLPs and my profession, and I'm afraid I reacted defensively here. I am sorry. I find that my perspective is rapidly evolving.

It has only been a few days, but already I regret having posted my original comment to you. (I am a poet, too, or used to be, and the heartfelt compliment remains.) For me to have felt the need to set you straight on an International Stuttering Awareness Day celebration of the power of your own authentic, dysfluent voice fills me with sadness, and remorse. And it strengthens your point. I'm sure the last thing you needed is for another SLP to tell you that you do not speak for everyone in the room. You already know that better than anyone. Honestly, I find my eyes welling up.

I've read that no apology has meaning if we haven't listened to the hurt party's anger and pain.

And the hardest part of a heartfelt apology is wholehearted listening--when listening may be the last thing we want to do. I told you I was listening before, when what I was really doing was talking. I am listening to you now.

You wrote about the first time you called yourself a stutterer – how it changed nothing about the sound of your voice, but suddenly you stopped fighting to be someone you weren't. I can identify with that kind of transformation. Although you and I may differ in the way we choose to use our instruments, we have something else in common. A turning point in my life was when I called myself a stutterer, too. Suddenly, self-acceptance and self-compassion were available to me, and I could start to quiet the noise of all those voices that have told me all my life that there was something wrong with me. There isn't.

You and I may not see everything eye to eye. But as Barry Yeoman said, "These contradictions, these tensions, make us stronger as a community." I am reminded that beyond any differences, you and I belong to the same community.

I celebrate your voice.

I wish you all the very best.

And to borrow a line from a friend in our community -

With kindness and compassion,

Rob

Michael Sugarman
8/27/2017 12:11:44 am

I am so glad to have read your articles--Really Cool--And wanted to share with you some history: In the late 70's attended peer support groups at Center for Independent Living and saw the stuttering community movement and dis-Ability rights movement together to argue for human rights (American Disability Act) and remove the stigma of being stupid, nervous and seen as less than whole."
As Executive Director of NSA during those early years modified peer support materials from Center for Independent Living for NSA peer support groups.
Later worked at Disability Rights Education and Defense Fund training folks around the country on Rehab. Act 504. And on either Sunday or Monday stayed to meet with stuttering community members.
By '82 NSA had 50 peer support groups around the country. And I would say maybe 7-10 groups embraced stuttering as a disability.And helped to write letters to Congress and met with local Independent living Centers and stormed their Congressperson for ADA passage. In fact if I remember Walt who stuttered from Minneapolis was the director of the Center for Independent Living Center.
I live in Oakland. And its now late--midnight.
Take care and hope to meet one day--Michael

Reply
Michael Sugarman
8/27/2017 08:06:29 am

Correction:
Early 80's it was to protest to protect our rights under Rehab. Act 504.

Reply
Robert
10/15/2017 12:47:31 pm

As a severe stutterer I have largely desensitized myself to the mockery, hostility, discomfort and disgust I evoke when people listen to me. What I am concerned with is being intelligible, not fluent. When I speak it can be a mess of halting, blocking, and prolongating. This combines with the circumlocutions, and odd sentence constructions, to produce not only disfluency but unintelligible speech. I want to be understood and rely on my listener to clarify, but they seldom do.
Stuttering therapies have not helped me, and the CBT turn has made it worse. By using the shaping targets I can read a fixed text with fluency. The problem is that, for whatever reason (though I do have thoughts on this), I cannot both speak fluently and understand what I have just read. It is analogous to a non-Latin speaker reading a Latin text fluently, but not being able to make heads or tails of what They just read. If the text I just read was taken away from me and I could not refer to it, I cannot tell you what I just read. I can, similarly, fluently speak a few linguistically simple lines to a listener, which I have memorized. However, I cannot engage in a fluent conversation.
The standard answer I get from SLPs is that I haven’t practiced enough, and I will become habituated. The single-minded focus on Fluency, rather then intelligibility, bars their comprehension. That is what the pathologizing of stuttering has done in my case: the emphasis is so on a pleasant listener experience that my understanding is not an issue to them.

Reply
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