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)
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).
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.
-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.