DID I STUTTER?
  • Home
  • About
  • Blog
    • Contributors
  • FAQ
  • Art
  • Contact
  • Resources

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

6/6/2016

15 Comments

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

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

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

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

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

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

-Josh


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

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

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

15 Comments
bob goldman
6/7/2016 05:08:05 pm

first, the nsp was founded in 1977. not nsa. it was never intended to have any political stances or be involved in the disability movement. Michael was involved in the disability area, always separate and apart from nsp. so what. the purpose was always for people who stutter to have a safe place to stutter among other people who stutter. apolitical. no agendas. I should know, don't you think? have you ever read the early nsp literature? seen any of the news articles from the early period? there is a vast history and purpose you seemingly know nothing about. very well written, however.

Reply
Cheryl link
6/8/2016 06:51:34 am

I wonder if this post used "political" as in "the personal is political." My feminist perspective informs everything I do even if I'm not talking about feminist stuff. And my disability justice perspective is there all the time even if disability isn't the topic. I don't see how it's possible to have disability rights and NSP/NSA completely separate if one of the founders was involved with both. They'd interact and inform each other, even in the background of someone's mind. Creating a safe space to stutter among peers is definitely an agenda, and a genius, much-needed, and fantastic agenda at that. Forming an organization at all that's led by the people it serves is a deliciously political act, similar to how the feminists in that same time period were rejecting society's rules for them, and they formed their own women-led feminist groups, support groups, and theater companies to bring the personal stories into the public sphere, and thus, politicize them.

Reply
Annie Bradberry
6/8/2016 12:31:54 pm

I found out about your blog today from another person who stutters.

They asked if I had seen it and another asked why someone would say bad things about the organization that saved “my life”.

Before I go on I do want to commend you for your passion and drive. We all have a story and our stuttering journey has affected each of us in a different way. With this being said, though we are all different, we can meet each other and immediately connect without saying a word. Behind our eyes are the times we haven’t done something, or the time someone finished a word for us… the wrong word, or the time we were fired from a job, I have been… and even memories of someone walking away or laughing. I could go on.

So I read. As I continued to read I felt feelings of anger and I felt hurt. There are so many ways to make change happen and to be heard… for me, this is not the way.

Why should it matter so much to me and why should you care what I say?

I am, one of three Executive Directors of the National Stuttering Project, now Association, who has remained active “in” the organization before, during, and after serving as Executive Director.

I’ve seen the support, I’ve received the support, and I have given the support.

I have expert knowledge.

I first found the NSP around 38-39 years ago, the first time the organization advertised outside of Northern California into Southern California. I was 19 years old and when my mom showed me the newspaper clipping saying to call for support… there was no way I would do that. I couldn’t email then, we didn’t have it. I had to either pick up the phone or write a letter. I did neither. I put it in the drawer in our kitchen with other clippings and such. It wasn’t until 12 years later that I got involved. I’m telling you this because I want you to understand the organization and know the truth.

First you say:
Brief history: The NSA was founded in California as the National Stuttering Project in 1977 by Bob Goldman and Michael Sugarman. The organization, which functions as a network of “chapters” across the US, was originally envisioned as quite a political project in line with the disability rights movement (it is not coincidental that the NSA emerged in California during the ’70s, nor that Sugarman is a long-time friend of the great disability activist Corbett O’Toole).

As commented on your blog by founder Bob Goldman:
“The NSP was founded in 1977. Not NSA. It was never intended to have any political stances or be involved in the disability movement. Michael was involved in the disability area, always separate and apart from NSP. The purpose was always for people who stutter to have a safe place to stutter among other people who stutter. Apolitical. No agendas.” It was Bob who spent an entire day in Sacramento walking all the non-profit incorporation papers through. He got them approved the same day.

You say:
The kind of support that the NSA offers focuses explicitly on acceptance, treatment, and rehabilitation rather than a political struggle against the ableist norms, practices, discourses that structure dysfluent lives in oppressive ways. Part of this move can be explained by the increased presence of SLPs (Speech-Language Pathologists) within chapter meetings and at the national conference.

Blame me and the then Board of Directors for the increased presence of SLP’s within the organization and at our national conferences. It was a goal during my 10 years as Executive Director. We worked hard to break barriers and misconceptions.

I believe an organization such as the NSA should represent all people who stutter and create a safe environment for learning, support, and self-growth. When we open our minds to diversity, we open our hearts to more information and an increased desire to learn. We need diversity, in organizations and culture as a whole—if we are to change, grow, and innovate along the way.

You say: “We cannot afford to pretend that “acceptance” and “treatment” are two perfectly equal options that co-exist peacefully.”

This statement offends me. I am a product of love and acceptance just as I am a product of good speech therapy treatment. I attended a 3 ½ week intensive program (Successful Stuttering Management Program) at the age of 22. For me, and I do believe many others, the two do co-exist. Seven years ago, my great nephew began to stutter. I remember that day as it was yesterday and I remember every single feeling and emotion I felt. When I heard him I got sick to my stomach. I fought back the urge to throw up. I was with my mom and when we left I asked her did you hear Max? She said yes. I began to cry, my tears a mixture of fear, sadness, and mostly guilt. Did it skip generations and find my Max? When I got home and after Max went to bed I called my niece

Reply
Annie Bradberry
6/8/2016 12:44:12 pm

*Continued*
When I got home and after Max went to bed I called my niece to express my feelings, crying through the conversation. My niece listened simply said to me, “If Max is going to stutter, what better family for him to be in. He has you. He has the NSA.”
I also had resources. I called my dear friend who also stutters - Larry Molt, Ph.D., CCC-SLP/AUD Assistant Professor, Department of Communication Disorders Director, Neuroprocesses Research Laboratory at Auburn University. Larry was coming out to California to do a training day with local SLP’s. At the end of his busy day he met with my Max. Since then, Max has grown out of his stutter. I knew then how to love and support Max who is now 11, but I was feeling helpless. It was like I forgot what I had been telling parents for years. It is different when it is close to home. Larry left me confident knowing what I needed to do and what I needed to make sure Max was receiving in regards to support and therapy for “his age”. I will never forget Larry’s support.
I will never forget my niece’s words. It summed up everything we as stutterers can hope for… to make it better for the next generation. I have joy in my life living as a woman who stutters. I have traveled the world. I have love and have friends for over 35 years that I call family. I’ve done things I never would have done if not for my stutter including having 20/20 film in my home, speaking in front of an audience of 1,000 – to a non-stuttering group, having lunch on a volcano in Iceland! With this being said… if Max had a greater chance, a great percentage of not growing up as an adult with stuttering… of course I would wish this for him and any child. I didn’t use the phone until I was 21 unless to family or my best friend. Those are memories now. Memories that fuel and sustain my involvement in the NSA today. I do it for the future.

You say: “It’s okay to stutter” and “it’s okay to eliminate stuttering” are lined up back-to-back as if they are completely equal choices within our society. But of course they are not.
You also say:
We need to be given the choice of whether or not to receive speech rehabilitation. Dysfluency-positive and dysfluency-negative perspectives should always be offered before choosing long term speech therapy. “Dysfluency-positive” (the full encouragement to not just accept but embrace and celebrate dysfluent voices) vs “dysfluency-negative” (attempts to reduce or eliminate stuttering) offer two very different understandings of the world, of our bodies, and of our relations to other people and to ourselves.
In my ten years as Executive Director of the NSA I spoke with hundreds if not thousands of fellow stutterers and their family members. Hearing someone find us for the first time that has lost all hope for the first time filled my heart and constantly reminded me how fortunate I was to serve the community. I can’t tell you how many times I would hold the phone to my ear, hearing the breath of another, softly saying “it’s okay, I know”. These calls could last 5 minutes and longer. How many suicide calls I received. How many people felt they could not endure anymore? They felt alone. To see change occur over a phone line… to hear a smile… even a smidgen of hope…
The NSA is a life line for many. It was for me.
Last year at the NSA conference I got to meet a man whom I met through Stutter Social. When he approached me smiles filled both our faces and tears in our eyes. Much taller than me, he put both his hands on my shoulders and said “you are real”. He now helps reaching out to other first timers. He has grown to accept and he has grown in his knowledge of options to help him when he is ready.
I believe I would not feel the way I do about my stutter if it was not for learning about both – what you call “Dysfluency-positive and Dysfluency-negative (full encouragement to not just accept but embrace and celebrate and attempts to reduce or eliminate stuttering)”
Integrating both beliefs is how I have learned to live with my stutter. I will always stutter. I try to stutter with grace but sometimes that is hard to do. I honestly believe if not for my acceptance, I would not have made it through the difficult reoccurring cycles. Striving to be better, to reduce my stutter struggle, eliminates the headache in my head and gut. Combining both acceptance and my learned skill to reduce works for me.
When I speak to university classes filled with upcoming speech-language pathologists (SLP’s), I leave them with advice that I picked up along the way. The last thing you want to do is use a “cookie cutter” approach. We are all different. Each of us reacts differently and responds differently to our stuttering and the therapy we seek. I also tell them ab

Reply
Annie Bradberry
6/8/2016 12:45:34 pm

*Continued*
When I speak to university classes filled with upcoming speech-language pathologists (SLP’s), I leave them with advice that I picked up along the way. The last thing you want to do is use a “cookie cutter” approach. We are all different. Each of us reacts differently and responds differently to our stuttering and the therapy we seek. I also tell them about a group of dedicated group of SLP’s initially known as the Specialty Board on Fluency Disorders. This special interest group came into being through the efforts of both professionals and consumers. It was championed by ASHA’s Special Interest Division 4, Fluency and Fluency Disorders, with support from the National Stuttering Association and the Stuttering Foundation of America. I was fortunate to serve a term as the Consumer Representative. This was an exciting time for the NSA and for me. I was treated as though I was an equal. I was heard. My opinions mattered.
Going back to the question my friend asked me today. Why would someone or a group say bad things about the organization that saved their life? Everyone deserves a voice and you do as well.
What do I hope for? Why did I just spend my entire evening writing to you?
I wish for you tolerance and an open heart. For myself, and I hope others, the NSA provides us not only with a safe and secure place to be, learn, and grow… but also a place to find support and help throughout our journey. There have been times in my 58 years when I wanted my stutter to go away. There were other times I wore my stuttering t-shirts everywhere and even carried a picket sign. There were other times I felt shame and needed the love and support of the organization, while another time I wanted to learn everything I could possible learn about stuttering…my stuttering. I found all within the walls of the NSA. I found the experience, the wisdom and I found hope and love.
Sincerely,


Annie Bradberry
Former Executive Director
National Stuttering Association

Hanan Hurwitz
6/9/2016 12:17:48 pm

Hello Josh,

In brief, you've got it wrong, mate. There is no contradiction between Acceptance and Treatment and research for a cure. None at all. And also no contradiction in having SLPs join us at the NSA conferences. In fact, having both groups together enables dialogue. We, the PWS, enable the SPLs to understand us, and to thereby provide better treatment for PWS of all ages. Erin indeed wrote an eloquent article for the Atlantic, but just because she wrote there are “internal tensions or cognitive dissonance within the NSA” does not mean that she is correct is saying that. She is, in fact, incorrect.

I am a PWS. I am very proud of who I am. I am one of the people on the ISAD team, and our theme for this year is Stuttering Pride. Know this, too: The NSA saved my life, and that is not an exaggeration. Although I am not an US citizen, the NSA welcomed me. I met hundreds of other PWS, and no philosophy of any sort was forced on me. The NSA conference is a platform for discussion. I went to my first conference in 2010, I listened to workshops, and I listened to stuttering. I learned, and I started my journey of discovery and recovery. Not recovery from stuttering, but recovery of my life.

This year at the conference I will proudly present a workshop with a most wonderful person who is an eminent SLP. No, she does not stutter, and we have wonderful dialogue. Our workshop is about "How the language we use affects the way we think about stuttering". Come along, and maybe you can join the dialogue.

Mate, by attacking the NSA you've got it all wrong, no matter how philosophically you craft your writing.

Take care,
Hanan

Reply
Hanan Hurwitz
6/9/2016 12:19:53 pm

Hello Josh,

In brief, you've got it wrong, mate. There is no contradiction between Acceptance and Treatment and research for a cure. None at all. And also no contradiction in having SLPs join us at the NSA conferences. In fact, having both groups together enables dialogue. We, the PWS, enable the SPLs to understand us, and to thereby provide better treatment for PWS of all ages. Erin indeed wrote an eloquent article for the Atlantic, but just because she wrote there are “internal tensions or cognitive dissonance within the NSA” does not mean that she is correct is saying that. She is, in fact, incorrect.

I am a PWS. I am very proud of who I am. I am one of the people on the ISAD team, and our theme for this year is Stuttering Pride. Know this, too: The NSA saved my life, and that is not an exaggeration. Although I am not an US citizen, the NSA welcomed me. I met hundreds of other PWS, and no philosophy of any sort was forced on me. The NSA conference is a platform for discussion. I went to my first conference in 2010, I listened to workshops, and I listened to stuttering. I learned, and I started my journey of discovery and recovery. Not recovery from stuttering, but recovery of my life.
... to be continued

Reply
Frank
6/10/2016 06:00:11 am

Comparing the "eugenics" of Downs Syndrome and stuttering is far fetched, at best. Downs Syndrome is always caused by an abnormality in chromosome 21, usually an extra copy. The early genetic research into stuttering points to several genes that may be interacting with each other that may contribute to stuttering. Dr Drayna said on StutterTalk that he believes that genetics may contribute to stuttering in about 50% of stutterers - the number of stutterers that have family members who also stutters. Genetic research is focused on increasing the understanding that genetics play in a subset on stutterers with possibly developing enzyme based therapies down the road. Stuttering is a complex disorder (yes, disorder) and a simple genetic test that will accurately predict its occurrence, let alone its severity, is highly unlikely.

Reply
Rita Thurman
6/10/2016 06:15:39 am

Hi Josh,
I am an SLP and I do not stutter. Why do I suddenly feel that I have attached a large red letter “A” to my chest in writing those words?

I have worked with children, teens and adults who stutter since 1977. I feel that I have a unique understanding of this population; however, because I don’t stutter...I will never know exactly how that feels.

Since the 80s I have been the chapter leader for an adult NSA group. In the 90s I added a teen chapter and a few years later started a support group for children that meet all day one Saturday a month. 80% of my caseload includes people who stutter. I see 8-12 people a day for therapy who want to find ways to change the burden of stuttering...through acceptance (which you confuse with giving up and I define as recognition) and changing their reaction to the stuttered moment–cognitively, emotionally and yes...physically. I am deeply committed to the community...and, oh, did I mention I don’t stutter?

You raise some interesting, albeit paranoid misconceptions in your rant. I won’t touch the abortion issue, but I do need to comment on treatment....given that is what I do. Why do we treat children who stutter if it is OK to stutter? Because it is not OK to fail to prepare a child for the negative impact of bullying and struggle. To help that child change his reaction to the stuttered moment, to begin early education for children and parents, to prevent development of shame, and most importantly –to develop good communication.

You imply that the increased presence of SLPs is negative. Why do we see so many more SLPs in the NSA? Because we are the ones who have first contact with people who stutter and can let them know about the support community. This is not a bad thing. It is not an “Us or Them” situation. It is an “us”. We should all work together to connect people who stutter. I have seen many adults, who have sought therapy for the first time, after living a life of avoidance and shame. Often they have never met another person who stutters. The first thing I do is arrange just that. I feel sure that you would not want that any other way.

Your statement “Disability oppression is far more complex than SLP recognizes and requires a distinctly political response.” I will say, in spending my days with people who stutter, going out on the street with them for “practice”, hearing their stories in the support group, you truly underestimate and reprimand these caring professionals. So, I am Speech Language Pathologist and I wear my red SLP letters proudly.

Reply
Jeff
6/10/2016 05:29:47 pm

I don't want to speak for Josh, but from my reading, I don't think he was attacking the NSA.

I think he was:
1. noting a shift in direction from the early years of the NSF/NSA to now. A shift from something more radical and empowering to something more tied to pathologizing and disempowering forces (researches who study the origins of stuttering in order to prevent stuttering, SLPs who work to reduce/eliminate stuttering, psychiatrists who hope to use drugs to medically reduce stuttering, etc.)
2. recognizing that the language Dr. Maguire used seemed to view the primary role of stuttering "acceptance" as a precursor to stuttering treatment, the way psychiatrists--as he is one, this language is probably really accessible to him--might say the primary role of mental illness acceptance of mental health disorder diagnosis is a precursor to psychiatric treatment. Josh believes there are other roles for acceptance, and might say that where acceptance leads may obviate the idea of stuttering treatment entirely.
3. Detailing the effects in other disability communities where "acceptance must come to serve recovery" has led and could lead to scarier futures for people who stutter.
4. Notes that stuttering pride is not an equal choice under this paradigm, as options become
a) fighting to exist as is and the oppression that entails. The "as is" could include the wonderful stuttering community pioneered by the NSA and the joys it brings, solidarity with other disability groups, and living in a world where not only we and others can love our own voices, but be part of transforming a world that is welcoming and excited to have plurality of different sounding voices.
b) no longer being a person or community who stutters. Just people who used to stutter but are better now. Those who don't or can't "get better" return to a darker time without community and face more difficulties in daily life as again, "people aren't supposed to stutter. If you stutter, why aren't you getting treatment to not stutter?"

I don't think there was any attacks being made. Just a thought piece regarding the shifting of direction of the NSA and where it might lead. I'm glad to see it is provoking discussion!

-Jeff

Reply
Gina W
6/13/2016 03:33:54 am

Upon first reading of the blog, it's essentially an argument against eugenics and selective abortion, and how this sits with acceptance. This strongly-felt argument informs the rest of the article (no matter how well referenced), so I didn't read it as an attack on the NSA particularly, only questioning how two conflicting strands of dealing with stuttering can exist within the same organisation. It's a valid question, but one I don't think has an answer (yet).

Reply
Andy
6/21/2016 10:58:04 am

Two things I’ve observed in our local NSA meetings have concerned me as an SLP who does not stutter. First, several SLPs attend once and never return. They are usually “checking the group out” in advance of talking with a client about it. A related group is SLP students, who periodically attend one meeting as an option in a course assignment (they can sometimes outnumber people who stutter in the meeting). On the surface, professionals attending an NSA meeting is not necessarily a problem – in fact, it likely is a great benefit for the SLPs/students. But this benefit for the professionals can come at the cost of problems that might not be readily apparent for people who stutter. At support group meetings, many people are there to talk about things that are deeply personal – things that they don’t talk about anywhere else. If there are “one-offers” in attendance (in particular, people who do not share the deeply personal experience of stuttering), then at least some of the people who stutter are likely to be less willing to bring up deeply personal topics. Saying such things requires a substantial level of trust in the other people in the room, and in my observations, the “one-and-done” SLPs rarely consider the idea that their very presence can damage that trust and have a silencing effect on attendees who stutter. It’s not because the SLPs are malicious, or even that they are doing something wrong, but the effect can be real all the same. And the people on the losing end of this effect are almost always the people who stutter, not the professionals. I’ve heard this directly from three of our local NSA members, and I suspect, but cannot prove, that other attendees might feel this way but not want to say it to me, an SLP who does not stutter.

The other dynamic that I’ve noticed is that people who stutter will often defer to the supposed “experts” in the room. This includes me, as well as SLPs who stutter, some of whom also often attend. The most common way this plays out is that a topic will be introduced, and then there will be a silence afterward, as people contemplate their thoughts and think about whether they will respond. One of two things then frequently happens. Sometimes someone in the group (often a person who stutters) will directly ask one of the SLPs what they think. I think that this often results from non-professionals feeling like what they might want to say will be “wrong” in some way. They don’t know the technical, or scientific, “facts” about stuttering, and they think that we do. They don’t want to say something that goes against these “facts” and then be called out (either being explicitly challenged, or being implicitly judged) for having made such a basic mistake. This pattern is also influenced by the assumption that the SLPs know something about stuttering that is more valuable than what it is that a given person who stutters knows about stuttering. That’s part of the power dynamic that is inherent in a “client-expert” relationship – the expert’s voice is worth more than the client’s voice. And so the "expert" voice is solicited first, and often it is the only voice that is solicited.

The other thing that often happens in the silence after a topic is introduced is that an SLP will be the first to break that silence and offer an opinion. No one TELLS the SLP to be the first to talk, but they often are. One reason (I’m sure there are many) is the SLPs’ collective experiences with talking. The SLPs who are regulars at our NSA meetings are people who love to talk about stuttering. It’s what we do. And we are accustomed to being valued for adding our voices to conversations – this is especially true for those of us who do not stutter, but even SLPs who stutter can find their stuttering voices valued within the field of SLP (not universally, for sure, and when stuttering clinician’s voices are valued, it is often in the frame of having “overcome” stuttering in some important way – this is a problematic framework too, but perhaps tangential to this discussion). So I have seen very well-meaning SLPs wanting to “add their voice” to the discussion. Strike that – I have BEEN a very well-meaning SLP wanting to “add MY voice” to the discussion. Here’s where I believe I was wrong. In this environment, my voice comes at a cost. It’s a cost that I don’t have to bear, and it’s one that is often invisible to me. But it’s a cost all the same – it’s a cost to the people who stutter. When I am the first to speak, I deny that opportunity to a person who stutters, and my action keeps them quiet – it silences them. And that person is the person who this group is really for. No matter how often I attend NSA mee

Reply
Andy
6/27/2016 09:25:16 pm

Whoops - the end of my comment did not come through. Here is the last little bit:

No matter how often I attend NSA meetings, no matter how much I am involved in the community of people who stutter (and I like to think of myself as deeply connect to this community), NSA meetings are not for me. And even though I often think I have something helpful to add, I can add that thought in multiple other contexts. This is a privilege that is not shared equally. In particular, it is denied to many people who stutter, and this sense that there are not enough places that value stuttering voices is a major reason why NSA meetings have such life-altering value for many attendees.

Reply
Dhruv Gupta link
7/26/2016 09:17:08 am

Wow! This is a great article. At The Indian Stammering Association (TISA) we believe that stuttering or stammering (in British English) is a human diversity just like hair/eye color. We believe in this paper, by Dr. Cristóbal Loriente, "The Demedicalization of Stuttering:
Towards a Notion of Transfluency": http://www.journalofstuttering.com/3-2/Loriente.2009.JSTAR.131-144.pdf and on ISAD: http://www.mnsu.edu/comdis/isad12/papers/loriente12.html Ph. D. One that attempts to create a society that is beyond fluency; it doesn't matter if your fluent or not. Similar to transgender.

It is very clear to me that stuttering is a human diversity. We have genetic research to prove it and we have our own experiences meeting so many different types of people from all over the world (I have met PWS from India, US, Japan, China, Uganda, Liberia, Iceland, Denmark, the Netherlands, Australia, the list is endless...).

I agree with Josh's viewpoint that searching for a cure is in complete contradiction with staying stuttering is ok. Until 1973, it was acceptable to offer treatment for being gay. (In 1973, the American Psychiatric Association’s (APA) declassified homosexuality as a mental disorder after much advocacy and fighting from gay activists.)

Currently, the professional name for stuttering is Fluency Disorder. This is like saying that people who are gay have a Straight Disorder! You can see how absurd this sounds! Why are we ok with people finding a cure for stuttering, but sensitive to people finding a cure for being gay? Because of all the noise that the LGBT community has made in the past few decades that it truly is OK, and a matter of PRIDE, to be gay/transgender.

We in the stuttering community have to make similar noise to make it VERY VERY CLEAR, that it really is OK TO STUTTER. We do not want to be cured, because there is nothing to be cured. There is nothing wrong with us.

The only thing that is wrong, and that needs self-help groups/knowledge/counseling are all the things BELOW THE ICEBERG in Sheehan's iceberg analogy (all the negative feelings/emotions/thoughts, https://www.mnsu.edu/comdis/isad6/papers/hicks6.html). We call that the stuttering mindset. This can be cured. And people who stutter can go on to live wonderful, productive, happy, inspired lives.

I wish the NSA, that claims to be the largest self-help organization of people who stutter (not true because the Chinese Stuttering Association and The Indian Stammering Association are much larger), would change its direction and stop searching for a cure before selective abortions based on stuttering become a reality. We would be destroying a part of being human, a human diversity. It's like killing off a species. It's clear to know that we should save the humpback whale from extinction, but why not the stutterer?

Reply
SED link
8/9/2016 10:14:56 pm

Great post, thank you for this. As a PWS and SLP I am fortunate to have a dual perspective.

You write: "SLP has always been driven by an eliminative logic that seeks to normalize, assimilate and ultimately eliminate nonnormative speaking bodies from the human population"

I understand your point, but I think the harshness of the language you used is perhaps best applied to the historic aims of the field. As a field, I think we've come quite a distance in understanding, evaluating, and attempting to treat the associated everything else below the surface of the iceberg. No doubt, there's always progress to be made and you bring up a valid point about the presence of SLPs at NSA.

As a field, of course SLP is going to pathologize stuttering to a certain degree. That's what we do - we need to label because we diagnose, treat, submit billing to insurance companies, etc.; however, this does not mean that individual SLPs who carry expertise in fluency walk into the therapy with a mission to wipe stuttering off the face of the earth. Of course there's nothing wrong with stuttering, that is until you feel like there is. But stuttering interventions do not need to emphasize complete spontaneous fluency, and thus continue to perpetuate the idea that stuttering is bad and shameful. The prevailing theory in stuttering intervention is not a strict fluency shaping model (nor has it ever been), whereby anything less than spontaneous fluency is a failure. (The disability rights community could and should have a field day with that one.) Rather, the leading voices in treatment advocate for an integrated approach that acknowledges the disfluency as well as the underlying fear, anxiety, etc and attempt to address all of the above. In fact, I think the most helpful outcome of therapy for me was not the increased fluency, but rather the control I felt I had gained over my disfluencies. From a stuttering disability standpoint, what is more powerful than feeling like you have control over your own stuttering and have the power to define yourself outside of stuttering. Don't get me wrong, getting there and staying there certainly isn't pretty, but I do think the SLP field puts an emphasis on that journey.

Reply



Leave a Reply.

    Categories

    All
    Ableism
    Charis
    Cheryl
    Chris
    Communication
    Community Formation
    David
    Disability
    Disability Politics
    Disability Rights
    Dori
    Eli
    Emma
    Empowerment
    Erin
    Gender
    Inspiration
    Intersectionality
    ISAD
    Jacquelyn
    Josh
    Language
    Medical Model
    Notes For Allies
    Passing
    Person-first Language
    Podcasts
    Relational Stuttering
    Review
    School
    Self Help
    Sexuality
    Social Model
    Speech Language Pathology
    Speech Therapy
    Stuttering Stories
    The King's Speech
    Time
    Zach

    SUBMIT

    Authors

    We stutter and we're down with it.

    Contributors

    Archives

    November 2018
    October 2018
    September 2018
    August 2017
    February 2017
    October 2016
    September 2016
    June 2016
    April 2016
    February 2016
    January 2016
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014

    RSS Feed


Powered by Create your own unique website with customizable templates.