Resisting Ableism in School-Based Speech-Language Therapy: An Invitation to Change

Abstract

You have accessLanguage, Speech, and Hearing Services in SchoolsIntroduction17 Jan 2023Resisting Ableism in School-Based Speech-Language Therapy: An Invitation to Change Laura S. DeThorne, and Hope Gerlach-Houck Laura S. DeThorne https://orcid.org/0000-0002-1561-2611 Department of Speech, Language, & Hearing Sciences, Western Michigan University, Kalamazoo Google Scholar and Hope Gerlach-Houck https://orcid.org/0000-0003-3810-4940 Department of Speech, Language, & Hearing Sciences, Western Michigan University, Kalamazoo Google Scholar https://doi.org/10.1044/2022_LSHSS-22-00139 SectionsAboutAbstractPDF ToolsAdd to favoritesDownload CitationTrack Citations ShareFacebookTwitterLinked In Imagine, for a moment, your social and emotional experiences as the student depicted in Figure 1—perhaps you are autistic, perhaps you stutter, perhaps you communicate in some other neurodivergent fashion. Imagine overhearing your peers whisper, "What's wrong with him?" Imagine receiving praise like, "Good job using your words," or "Your talking was so smooth," when your speech comes out the way someone else wants it to—with the focus so often on how you are communicating rather than what you are saying. Imagine overhearing "compliments" like, "He doesn't look disabled," or "Wow, she's really controlling her stuttering today!" Imagine your classmates being referred to as "tolerant" simply because they do not shun or bully you. Imagine being constantly reminded to change your natural communication style so that others feel more comfortable. Imagine overhearing your teacher explain that she is not going to get her child a life-saving vaccine, because she fears that it could make her child like you—autistic. The underlying assumption behind all these messages is that something about the way you communicate, something about you, is wrong. That underlying assumption is ableism. Figure 1. Illustration by artist Katy Kehrer of the type of messages often overheard by neurodivergent communicators at school. Download figure Download PowerPoint The Nature of Ableism The purpose of this forum is to encourage speech-language pathologists (SLPs) to recognize and resist ableism in everyday school-based practices, specifically as applied to stuttering and autism. As SLPs, we are trained to identify difference in how humans communicate—to measure it, to label it, and, often, to "fix it." In doing so, we make choices every day about what forms of communication are impaired and which ones are not, who needs treatment and who does not, what makes a worthwhile goal and what does not. Our judgment, like our profession at large, is inevitably shaped by ableist notions of what is valuable and, by association, who is valuable (Abrahams et al., 2019; Donaldson, 2021; Dorsey, n.d.; St. Pierre & St. Pierre, 2018; Yu et al., 2021). By ableism, we are referring to a network of beliefs, processes, and practices that idealize a particular kind of body and related abilities as species-typical and therefore essential and fully human (definition adapted from Campbell, 2001, p. 44). In contrast then, ableism frames disability as "a diminished state of being human." Specific to the communities we are focusing on in this forum, ableism assumes that stuttering and autistic neurologies are inferior, problematic, and, therefore, in need of change. This assumption is societally pervasive and operates on a number of interconnected levels—personal, interpersonal, institutional, and cultural—thereby leading to the systemic oppression of disabled people (Cosma, 2021); specific examples are provided in the sections below and throughout the articles in this forum. Because ableism is engrained at so many levels, we are all influenced by ableism. Cultural standards become personal views. From birth, we are bombarded by both direct and indirect messages of what it means to be "normal" or "not normal," potentially before we even know someone who is neurodivergent or certainly before we can identify as such (Nario-Redmond, 2020). Autistic people are often stereotyped as White males, disturbed "loners," sometimes brilliant, but lacking in empathy, and tied through public discourse to horrific acts of violence (Solomon, 2015). People who stutter are commonly treated like children (Coalson et al., 2022) or reduced to stereotypes associated with stuttering (i.e., afraid, guarded, nervous, and less competent; Kalinowski et al., 1996; Silverman & Paynter, 1990), restricting the expression of their full humanity. In line with such stigma, accessing services through institutional funding like insurance or special education often requires deficit-based narratives that set the stage for goal-writing and service provision that is focused on "fixing" what is perceived as wrong (i.e., the overt characteristics of stuttering and autism). Given the fact that ableism runs throughout our institutional and cultural fabrics, it often is disguised as "common sense" and is perpetuated by some of the most well-meaning people. Of course, there can be grains of truth in societal narratives about stuttering and autism, but they are too often exaggerated and misunderstood. For example, as a group, stutterers are more likely to have higher levels of social anxiety than people who do not stutter (likely due to the social mistreatment they experience; Craig & Tran, 2014). Yet, it would be inaccurate and stereotypical to assume that every person who stutters is inherently anxious in social situations. Conversely, the positive aspects of autistic or stuttering identities—such as the all-consuming nature of autistic joy (Bascom, 2011), the meaningful connection that can be forged through the vulnerability of stuttering (Constantino, 2019)—rarely emerge in public conversation. Consequently, what parent wouldn't hope for a "normal" child, one who does not stutter or get identified as autistic? Why wouldn't we, as SLPs, work toward the reduction of autistic traits and fewer moments of stuttering? We are only trying to help people live more successful, less painful, more "normal" lives. Shifting Boundaries of Normality History, however, has taught us that the boundaries for normality and typicality are porous. In short, normality is socially constructed, meaning that the concept is created and upheld through human needs, desires, and power dynamics (see Annamma et al., 2013). Nario-Redmond (2020) summarizes work from disability scholars in noting that the concept of normality has historically been deployed "as a tool to demarcate, measure, and manage deviant populations considered less than human, animalistic, or impediments to human progress" (p. 145). To be considered as competent or deserving of resources (i.e., to be normal) requires a contrast (i.e., abnormal), a malleable foil that can shift as needs arise. For example, human traits such as skin color, hair texture, height, and sensory acuity vary along a continuum, and yet, society has constructed social and legal categories of race and disability that control access to resources and that shift over time based on the needs and interests of those in power (Campbell, 2001; Wilkerson, 2020). For example, the "correctability" of a person's visual impairment impacts whether or not they are eligible for disability benefits (Social Security Administration, 2022). If you are perceived as having an impairment, you are often expected by power structures to seek treatment, and a cure if available. When it comes to disability, Nario-Redmond (2020, p. 80) noted: "Societies and scientists have historically made serious errors in determining what kinds of people are acceptable and which behaviors should be aggressively treated." As examples, the acceptance of both Deaf and Queer communities as "normal" has morphed over time. Egregious treatments in the name of professional care have galvanized the need for civil rights movements. For example, deaf persons have historically been "treated" through religious interventions like prayer or exorcism; through exposure to loud noises, like trumpet blasts; and by putting various substances into their ear canals, like human milk and goat bile (Markides, 1982). Similarly, stutterers have been "treated" with moral advice, placement of various objects in their mouths—from pebbles to forks—and surgical procedures that severed parts of their tongue and/or related nerves (Klingbeil, 1939). As additional examples of alarming treatments, Solomon (2012) writes about his experience with conversion therapy as a young gay man, and Silberman (2015) writes about Lovaas' historical use of behaviorist techniques like reward and punishment (e.g., from tokens to shock) to "normalize" both autistic children and boys who were perceived as acting too feminine. The Deaf community continues to be concerned about the number of deaf children who experience language deprivation due to inaccessible speech and no exposure to signed language (Humphries et al., 2016), and the Autistic community has voiced persistent concerns about restricted access to augmentative and alternative communication (AAC; see Donaldson et al., 2023). Despite such parallels, many civil rights movements have explicitly utilized downward comparison (i.e., "We are not like them") as a means to distance themselves from the disabled community in an effort to obtain the privilege of normality (e.g., Holcomb, 2013, pp. 243–263). Of interest, disability advocate Mel Baggs (2016) makes the case that ableism is at play any time one group of people is considered biologically or psychologically inferior to another group of people and is, therefore, at the heart of most forms of oppression. As a result, the abuse of disabled individuals remains a largely unrecognized part of our past and present in the United States. As examples relevant to this forum, autistic persons are still subjected to restraint, exclusion, and shock in certain settings (see Autistic Self Advocacy Network, 2021, 2022). Stuttered speech and people who stutter are publicly ridiculed, often without accountability or consequence. For example, the phrase "Did I stutter?" is commonly used to emphasize a point in conversation and memes, implying that the act of stuttering somehow makes words less valuable or not worth listening to. In part, because of such stigma and abuse, both the autistic and stuttering communities experience elevated rates of under- or unemployment as well as mental health crises such as depression and suicidal ideation (Briley et al., 2021; Cassidy et al., 2018; Gerlach et al., 2018). Models of Disability Our focus on ableism is not intended to deny the harms and difficulties associated with diagnoses like autism or stuttering. Instead, acknowledging ableism invites us to consider the extent to which harms are inherent in the individual's condition, as the medical model of disability would suggest, versus the extent such harms are a consequence of societal barriers, as the social model of disability highlights (Marks, 1999). Of course, both intrinsic and societal harms can co-exist, but we have focused this forum largely on the latter due to its underrepresentation in our literature. Aligned with the social model of disability, the Neurodiversity Movement is a civil rights movement that emerged in the 1990s as an organized recognition that autism and other distinct neurotypes are natural and valuable variations in neurocognitive functioning (Silberman, 2015). Drawing on the neurodiversity paradigm and its related terminology, we use the term neurodivergent communication here to denote neurologically based patterns of communication inherent to autism and stuttering that diverge significantly from the dominant societal standards of "normal" (Sherlock's Flat Affect, 2015; Walker, 2014). Like the social model of disability, the neurodiversity paradigm attributes many of the challenges associated with neurodivergent communication to societal stigma and other environmental barriers. For those of us without the lived experience of autism or stuttering, such environmental barriers can be hard to recognize and understand. Autistic persons have pointed to examples such as the prevalence of sensory aversives (e.g., fluorescent lighting, heavily scented products) and unnecessary social conventions (e.g., "small talk," high-stakes interviews). People who stutter have highlighted the inaccessibility of voice-activated technology and the inclusion of "fluent speech" as a common minimum requirement in job advertisements. Both the autistic and stuttering communities have emphasized the privileging of speech as an unnecessary barrier—in particular, time-pressured and fluent speech (e.g., Gomez-Victoria & Pava-Rispoll, 2021). For example, therapy goals for people who stutter are commonly centered on promoting fluent speech rather than communication ease, self-advocacy, and community building (Gerlach-Houck & Constantino, 2022). In addition, communication options such as AAC are often withheld from nonspeaking autistic children out of (misinformed) fear that it will inhibit speech development (Donaldson et al., 2023; Romski et al., 2010). Such personal and cultural views are compounded by institutional barriers to AAC access such as limited and cumbersome insurance coverage. The Role of School-Based SLPs The emphasis on speech correction and access to AAC falls squarely within the scope of practice for SLPs, and over half of practicing SLPs are employed within the public schools (American Speech-Language-Hearing Association, n.d.). In addition, the school-age years are fundamental to the formation of a child's identity. While the explicit focus may be on academic domains such as reading, writing, and arithmetic, all such activities are inherently embedded in a social milieu of both implicit and explicit inquiry into the nature of interpersonal differences and identities: Who am I? How do I differ from others? What do those differences mean for me? To ignore this social reality is likely to make academic activity less accessible to neurodivergent communicators and misses a critical opportunity to shape social understanding and personal identities in powerful ways. Consider, for example, the student who stutters and cannot focus on the lesson because they are preoccupied with concern about being unexpectedly called on. Stuttering and autism can both be what Solomon (2012) refers to as "horizontal" identities—identities that are not shared with immediate family members. Whereas race and gender are often shared between child and parent, positive identities tied to neurodivergent forms of communication often are not, and therefore must be forged outside of the home. Even when autism and stuttering are shared between parent and child, as happens more often than chance due to genetic factors, parents may still pass along personal biases and internalized ableist messages about the communication neurotype they share with their child. It makes sense they would want their children to avoid the hurt they may have experienced. Due to our roles and responsibilities in supporting the communication of school-aged students, SLPs often play a prominent role in how students feel about their communication, and consequently, themselves. Our Focus on Autism and Stuttering Although the prevalence of ableism within our field extends beyond clinical interactions with autistic and stuttering individuals, we have focused this forum on these communities for four reasons. First, both diagnoses are neurologically based and most often developmental in nature, which contributes to identity formation. Second, both autism and stuttering have active self-advocacy movements aimed at embracing positive identity and resisting medicalization (Constantino et al., 2023; Silberman, 2015). To be clear, this forum is not intended to imply that there is no place for medicalization within the field of speech-language pathology as a whole. Instead, it is a call to reconsider the role of medicalization within these two populations in particular. Third, both the autistic and stuttering communities have highlighted the harmful role of professionals, in particular SLPs, in encouraging masking (also known as concealment or camouflaging), or efforts dedicated to hiding aspects of oneself from others to "pass" as a member of the dominant group within social interactions (Cage & Troxell-Whitman, 2019; Gerlach-Houck et al., 2023). The fourth and final reason for combining autism and stuttering in the same forum is that we believe there is power in recognizing similarities within the neurodivergent experience, even if these experiences are not identical. In his book exploring identities that fall outside of societal norms, Solomon (2012) writes, "Difference unites us. While each of these experiences can isolate those who are affected, together they compose an aggregate of millions whose struggles connect them profoundly" (p. 4). Despite the parallels across stuttering and autism communities, we do not wish to minimize the significant differences between them. One prominent example is that autism is often self-described as a more full-body experience relative to stuttering; consequently, autism may more readily translate into an identity that feels fundamental to one's sense of self, whereas stuttering may feel like a communication-specific identity or a feature of communication. Accordingly, one transparent difference readers may notice throughout this forum is the communities' preferences toward identity-first versus person-first language. Data from autistic persons have consistently favored identify-first language (i.e., autistic vs. person with autism) given the pervasive of autism on how a person experiences the with the understanding that person-first language often pathology et al., 2021; et al., et al., 2013). 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