Moving Toward Anti-Ableist Practices in Aphasia Rehabilitation and Research: A Viewpoint

Abstract

Purpose:

Ableism is a pervasive set of beliefs that regard nondisabled bodies and minds as ideal and necessary to live a full life. Ableism manifests for people with aphasia as stigma and discrimination based on their language ability. We assert that ableism contributes to decreased quality of life for people with aphasia and should be actively challenged and disrupted by clinicians and researchers in the field.

Method:

We applied the Health Stigma and Discrimination Framework (HSDF) to outline how stigma and discrimination are perpetuated against people with aphasia on the basis of language ability and their downstream health and social consequences. We presented this framework at the Clinical Aphasiology Conference in 2023 and share themes and challenges that arose from this discussion and from our ongoing learning.

Discussion:

Applying the HSDF to aphasia outlined potential sequelae of ableism. We identified preliminary foci of future initiatives aimed at challenging ableist beliefs and practices and means to monitor the effectiveness of such interventions. Furthermore, we draw attention to the seeming tension between anti-ableist practices and traditional language rehabilitation goals. We assert that this tension may be a catalyst for fruitful discourse on how clinicians and researchers can resist ableism while honoring the lived experiences of people with aphasia and their goals for language rehabilitation. These discussions may be facilitated by existing models in disability studies (e.g., the political/relational model).

Conclusions:

Clinicians and researchers are well positioned to challenge ableism and minimize the resultant health and social impacts for people living with aphasia. Anti-ableist practices are not antithetical to aphasia rehabilitation and can be thoughtfully integrated into rehabilitation practices and discourse.

The primary goal of aphasia research and treatment is to improve the quality of life of people with aphasia by modifying the variables hypothesized to limit their well-being. Treatment approaches work toward this goal by directly addressing communication skills via interventions that target language or other communication-related behaviors (for a review of aphasia treatments, see Fridriksson & Hillis, 2021; Tilton-Bolowsky & Hillis, 2023). Other approaches focus on environmental factors, including the physical environment, social norms, shared attitudes, and beliefs (Kagan et al., 2008; World Health Organization, 2001). While a handful of interventions target the physical environment (e.g., communication partner training), fewer target social norms, shared attitudes, and beliefs. We assert that oft-unspoken social norms, shared attitudes, and beliefs about aphasia warrant close and explicit examination, as they too decrease quality of life for people with aphasia via experiences of stigma and discrimination.

The aim of this article is to initiate a larger discussion about ableism. For consistency with definitions of ableism used in critical disability research and born from decades of work by people in the Disability community, we use the definition put forth by Campbell (2001), in which ableism is defined as “a network of beliefs, processes and practices that produce a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human” (Campbell, 2001, p. 44). This network of beliefs, processes, and practices consequently results in negative experiences and outcomes for those without the “perfect, species-typical” self and body. Ableism is evident in pro-able-bodied implicit and explicit biases and has been found to have one of the strongest implicit and explicit bias effects across social groups (e.g., gender, ethnicity, age group, political orientation; Nosek et al., 2007). In the context of aphasia, ableist thinking would support the belief that a body that can produce “species-typical” communication—that is, spoken language to communicate in grammatically conventional sentences—is necessary to live a good, full life. We assert that this type of ableist thinking is unintentionally supported and reinforced by some of the practices in which aphasia practitioners, researchers, and educators engage. We ourselves can acknowledge instances in which we have engaged in behaviors or thinking that reinforce ableist beliefs about communication, for example, modeling a spoken production of a word after a conversational partner with aphasia has already effectively communicated the idea via gesture.¹ We believe that most instances of ableism-reinforcing practices occur unknowingly and, therefore, an explicit discussion about how ableism surfaces for people with aphasia would serve as an impetus for clinicians and researchers to critically examine our own beliefs, as well as the explicit and implicit messages conveyed by our behaviors. Furthermore, our desire to initiate this explicit discussion about ableism is motivated by our deep and genuine care for the aphasia community and by our desire to do the best we can for our clients while inflicting the least harm possible (a sentiment we are confident that we share with the rest of the field). The goal of initiating this discussion is to reduce ableist practices in aphasia rehabilitation and research. It is neither our intent nor our goal to delegitimize aphasia rehabilitation or speech-language services.

To structure our viewpoint, we present an application of a framework from critical disability studies to gain insight into how ableism may manifest for people with aphasia. It is our view that explicitly characterizing ableism as it manifests toward people with aphasia will lead to actionable next steps necessary to (a) promote increased social acceptance of diverse ways of being, including one's communication, and (b) inform the development and use of clinical tools and interventions that actively refute ableist thinking by challenging ableist social norms, shared attitudes and beliefs, processes, and practices.

Existent Literature on Ableism in the Communication Sciences

Examining the existing literature in the field of communication sciences, we found that work discussing ableism was most prevalent in the areas of hearing (e.g., Eckert & Rowley, 2013), stuttering (e.g., Gerlach-Houck & Constantino, 2022; St. Pierre & St. Pierre, 2018), autism (e.g., Bottema-Beutel et al., 2021), and school-aged speech and language therapy (e.g., DeThorne & Gerlach-Houck, 2023; Nair et al., 2023). Although ableism has been acknowledged in relation to aphasia (MacKay, 2003), literature directly examining ableism in the context of aphasia is scarce.

MacKay (2003) briefly identifies ableism in aphasia as arising from medical models of disability, which define disability as stemming directly from impairments in body function or structure (Haegele & Hodge, 2016). The medical model takes impairments in body function or structure (including the mind) and conflates them with illness and sickness and, thus, views these impairments as problems that require curing, fixing, or eradication, so the person can once again function as a “normal” person in society (Forhan, 2009; Haegele & Hodge, 2016). Furthermore, the medical model places the onus of fixing, eradicating, and/or managing one's disability on the disabled person, as it views the “problem” (to be “fixed”) as residing in the person themselves (Olkin, 2001). In the context of aphasia, the medical model views the challenges experienced by people with aphasia as caused by their “damaged speech,” which they should aim to ameliorate by seeking out and participating in therapy to “normalize” their communication (MacKay, 2003). MacKay (2003) posits that those with stroke/aphasia negotiate between the realities of the medical model/ideology and social model/ideology of disability on a daily basis. Social models of disability make a distinction between disability and impairment: Disability is the product of societal barriers and social exclusion, not one's physical limitations or impairments (Shakespeare, 2006). In other words, people with impairments are disabled by our ableist society and not by their physical impairments (Finkelstein, 2001). Social barriers and exclusion due to disability result in many consequences across social and occupational contexts. Through the social model, some propose that the oppression and barriers experienced by disabled people can be lessened via social change, removal of social barriers, workplace accommodations, and anti-discrimination legislation (Haegele & Hodge, 2016; MacKay, 2003; Sabatello, 2014; Shakespeare, 2006). In the context of aphasia, Kagan (1998) suggests that aphasia practitioners should work to reduce societal barriers by integrating social approaches into aphasia treatment, which aligns with the social model. Kagan and Gailey (1993) liken social approaches to wheelchair ramps, which improve access for those who are physically disabled. They assert that social approaches to aphasia can provide “conversational ramps” to improve communication access for people with aphasia. Examples of approaches that align with the social model include Kagan's Supported Communication Approach for Aphasia (Kagan et al., 2001) and the Life Participation Approach for Aphasia (LPAA; Chapey et al., 2000).

These works by Kagan and MacKay illustrate the utility of identifying drivers of ableism (e.g., medicalization of aphasia, as described by MacKay, 2003) as a means of mitigating ableist practices (e.g., integrating social approaches into aphasia treatment, as described by Kagan & Gailey, 1993). Thus, we sought a framework that could be used to describe drivers of ableism to support continued, ongoing efforts to mitigate ableist practices that negatively affect people with aphasia.

In the field of stuttering, researchers have applied models and frameworks from critical disability studies to systematically outline drivers of ableism and identify targets for support services and monitoring. For example, Gerlach-Houck and Constantino (2022) utilized the Health Stigma and Discrimination Framework (HSDF; Stangl et al., 2019) to outline the stigmatization toward stuttering that stems from ableism and to characterize how ableism exerts influence over people who stutter. In the context of health and disability studies, stigma is the social disqualification of people or communities that results from being identified as disabled (Goffman, 1963; Link & Phelan, 2001; Weiss et al., 2006). Stigma results in discrimination, that is, overt actions driven by stigma that occur at the individual and structural levels (Abbey et al., 2011; Link & Phelan, 2001). In this article, we use the term stigma to refer to attitudes and beliefs, and the term discrimination to refer to acts that occur because of stigma. However, given the interrelatedness of these constructs, we will frequently use these terms together. The HSDF can be leveraged to articulate how stigmatization and discrimination occur across five socio-ecological levels (the individual, interpersonal, organizational, community, and public policy levels), which in turn, can help to identify where to intervene and how to monitor the prevalence of stigma and discrimination. Importantly, work that has identified stigma at the individual level (e.g., self-stigmatization), organizational level (e.g., employment discrimination), and public policy level (e.g., denial of accommodations) has informed disability-affirming supported communication approaches (Santhanam, 2023) and further promoted communication access, choice, and agency for autistic students (Donaldson et al., 2022). The same positive changes may support increased access and inclusion for people with aphasia, further motivating the current work.

Importantly, we approach the application of the HSDF to aphasia as parallel and complementary to existing work that promotes functional communication approaches for aphasia. We see the current work as a continuation and extension of ongoing efforts to increase inclusion of people with aphasia in our communities. We wish to acknowledge the disability-affirming nature of certain existing aphasia practices, such as the LPAA (Chapey et al., 2000) and functional communication approaches advocated for by the late Audrey Holland and colleagues. Such approaches prioritize participation by reinforcing effective communication over “correct” spoken language production. Furthermore, they directly challenge the ableist notion that specific, prescribed language abilities are necessary prerequisites for engaging in meaningful life activities. Undoubtedly, the exploration of ableism in aphasia is facilitated by this foundational work.

Applying the HSDF to Aphasia

The HSDF divides the process of stigmatization into five cascading steps: (a) drivers and facilitators, (b) stigma marking, (c) manifestations, (d) outcomes, and (e) health and social impacts. Interventions aimed at lessening stigmatization and discrimination target drivers and facilitators, and the effects of anti-ableist interventions can be assessed by monitoring manifestations and outcomes. Here, we explain each step and provide examples. Figure 1 is populated with a preliminary set of examples in aphasia. We generated the majority of these examples in preparation for roundtable discussions we hosted at the 52nd Clinical Aphasiology Conference in 2023, and a few examples were generated by roundtable attendees (i.e., fellow clinicians and researchers) during the roundtable discussions themselves, which are discussed in more detail in the Emerging Themes and Challenges section below.

Figure 1.

This figure depicts the Health Stigma and Discrimination Framework (Stangl et al., 2019) and is populated with examples from aphasia. We generated these examples in preparation to host a roundtable discussion on ableism and aphasia at the 52nd Clinical Aphasiology Conference in 2023. This framework can be used to understand how ableism perpetuates stigma and discrimination against people with aphasia.

Drivers and facilitators are factors that influence stigmatization and discrimination. Drivers are inherently negative and increase stigmatization toward people with disabilities through fear, concern, judgment, and/or blame at the individual level (Stangl et al., 2019). For example, concern about work productivity could be considered a driver of stigma toward people with aphasia that leads to employment discrimination. In fact, studies of employment rates find that people with speech, communication, cognitive, and/or intellectual disabilities have higher rates of unemployment compared to people with physical and/or sensory impairments (Gupta, 2012). This driver of stigma can be traced to the industrial revolution, in which workers who could navigate the workplace in a “standard” and efficient way were considered more profitable relative to those with “nonstandard” bodies who, to achieve the same productivity, required additional production costs (e.g., job accommodations, environmental modifications; Oliver & Barnes, 2012). Navigating a workplace with aphasia may—and often does—require supported communication strategies and occupational support (Manning et al., 2021), which may be associated with decreased productivity and consequently, increased stigma and discriminatory hiring practices.

Facilitators, which occur at the societal level, are factors that can either increase or decrease stigmatization. Facilitators include awareness, public figures, religious or spiritual beliefs, laws or policies, and other factors that can have positive or negative effects on stigma (Stangl et al., 2019). Greater aphasia awareness, for example, could have a positive influence on the stigmatization process and reduce discrimination against those with aphasia, while a lack of aphasia awareness could maintain or exacerbate stigma and discrimination against those with aphasia. In mental health studies, directed educational programs have been used as facilitators to decrease stigmatization. Meta-analyses on the effects of antistigma approaches conducted by Corrigan et al. (2012, 2015) have found that educational programs and approaches (including classroom-based and one-on-one sessions, videos, flyers, and webpages dispelling myths about mental illness, among others) have been effective in reducing stigma toward people with mental illness. Theoretically, increased awareness via educational programs and statements about aphasia may similarly reduce stigma toward aphasia.²

Drivers and facilitators can result in stigma marking, the next stage outlined in the HSDF. During stigma marking, stigma is applied to people or communities based on their health condition or other perceived differences, and results in people being identified as belonging to a stigmatized identity (Stangl et al., 2019). For example, a recent systematic review found that people with aphasia are often explicitly or indirectly excluded from stroke research (Shiggins et al., 2024). Stigma marking can be seen in the various “rationales” for this exclusion given by some of the included studies, which characterize/generalize people with aphasia as being incapable of understanding instructions, having impeded communication, and/or having reduced “educability” (Shiggins et al., 2024).

Once stigma marking occurs, its manifestations (the next stage in the HSDF) include stigma experiences and stigma practices. Stigma experiences are the lived realities of people with stigmatized identities, and include experiences of discrimination, self-stigma (e.g., embarrassment or shame due to communication ability; Fama et al., 2022; Taubner et al., 2017), anticipated stigma (e.g., anticipating a customer at a store will be annoyed or “gawk” if you need more time to communicate with an employee; Brown et al., 2006), and secondary stigma (e.g., stigma experienced by family, friends, or caregivers by association). The other manifestation of stigma marking, stigma practices, refers more broadly to the social norms, stereotypes, resultant exclusionary behavior, and discriminatory attitudes toward disabled people (e.g., exclusion from stroke research, as seen in Shiggins et al., 2024). Social rejection and distancing are also commonly experienced by people with aphasia when relatives, friends, and co-workers avoid interacting with people with aphasia (a stigma practice) due to their discomfort with disability (Dalemans et al., 2010; Parr, 2007).

Since it is often that a person has more than one stigmatized identity, the concept of intersectionality is essential to this discussion and aphasia rehabilitation as a whole (Centeno, 2024). Intersectionality is of immense relevance to the field of speech and language therapy in general as all clients and professionals have intersecting identities that have varying levels of stigma. Furthermore, intersectionality is essential to consider in any discussions of assessment and treatment of communication, given the sociocultural context within which speech-language pathology has developed (see O'Connell, 1990, for history of speech therapy from 1840 through 1940). One's gender, race, ethnicity, socioeconomic class, religion, sexuality, and disability status are some aspects that comprise one's identity (Crenshaw, 1991). Each of these aspects of identity has an associated form of oppression, including (but not limited to) sexism, racism, classism, religious oppression, heterosexism, and ableism (Tatum, 1997). When oppressive systems converge, they interact in complex ways and result in stigma experiences that are unique to members of a given group (Turan et al., 2019). For example, an older Black transgender woman with aphasia would likely have a different stigma experience than a young cisgender White man with aphasia. It is imperative that we consider the very real consequences of intersectional stigma to ensure that interventions aimed at reducing ableist practices adequately address the needs of all people we serve.

Stigma manifestations (i.e., stigma experiences and practices) influence outcomes for people in the affected community and more broadly, for institutions and organizations. For example, people with aphasia experience stigma from health care professionals, which manifests as a lack of communication accessibility (e.g., not being spoken to directly by their health care providers and not having opportunities to express themselves; Carragher et al., 2024). At the individual level, this could result in delayed or missed health care services and undesirable health care outcomes. At the institutional or organizational level, this could result in people with aphasia underutilizing public health services. For a person with aphasia, the effects of experiencing stigma can be assessed by evaluating a person's relationships, income, mental health, or access to the health care and judicial systems. For organizations and institutions, the effects of stigma can be observed in policies and laws, hiring practices, utilization of services, and health care coverage and availability, among others (Stangl et al., 2019). Stangl et al. (2019) suggest that together, individual- and organizational-level outcomes explain the health and social impacts of stigma, such as increased morbidity and mortality, reduced quality of life, and social exclusion.

Emerging Themes and Challenges

To initiate broader conversations about ableism in the context of aphasia, we led two roundtable discussions at the 52nd Clinical Aphasiology Conference in Atlantic City, NJ (Nunn et al., 2023) in which we explored ableism and aphasia through the HSDF framework. These roundtable discussions were attended by fellow aphasia researchers and clinicians at the conference. We took continuous notes throughout the roundtable discussions to record all attendees' statements, which included questions, comments, and reflections. Following the conference, we reviewed the notes and grouped similar statements together, until each individual statement was allocated into a “group.” Then, we reviewed the groups of statements and generated descriptive titles for each. This resulted in five groups of statements, which we refer to as “themes” and describe below.

Themes

Five major themes arose during the roundtable discussions:

1. Familiarity with ableism varied. We set out to understand how familiar and/or comfortable aphasia clinicians and researchers currently are with the concept of ableism, as we were unsure how this topic would be received. Some attendees reported familiarity with the concept, and felt comfortable with various concepts central to ableism, while others expressed that this was their first foray into the topic. We interpreted the wide range of conversancy with ableism as indicating that the concept of ableism was not yet mainstream but was a topic of broad interest. No attendees reported discomfort with the concept nor disagreement with the idea that ableism is present in the context of aphasia.

2. Utility of the HSDF. Attendees found the HSDF useful in systematically describing experiences of stigma and discrimination and facilitatory in initial explorations of their beliefs about underlying causes of ableism.

3. Insufficient resources on ableism and aphasia. A few attendees commented that they had personally looked for information on ableism and aphasia but had not found anything that explicitly discussed the two jointly. Aligning with our experience during our initial searches for information on this topic, most attendees encountered the topic of ableism being discussed in other fields, including stuttering, autism, and other neurodivergent communities.

4. Resources are available in related fields. Given the dearth of resources specific to aphasia, attendees discussed resources that can be used to understand ableism in aphasia. The disability rights movement and related scholarship in the field of stuttering emerged as sources that attendees felt could provide helpful models for aphasiologists in reducing stigma or judgment associated with differences in communication. Literature on identity realignment, identity motive, and belonging motives were identified as useful for understanding internalized ableism and how this may change over the course of recovery (for discussion on identity shift after stroke, see Meyerson & Zuckerman, 2019). More broadly, perfectionism and productivity culture were identified as relevant to understanding the sources of discrimination experienced by people with aphasia (Okun, 2021).

5. Next steps. After reflecting on our own practices, we asked attendees to share ideas for potential next steps in research and clinical practice to challenge ableist beliefs and practices. Figure 2 outlines ideas and potential examples that arose during this conversation as well as through ongoing reflections among the three authors. However, it is critical that next steps in the disruption of ableism in aphasia care actively engage people with aphasia. A common refrain in the disability community is, “Nothing about us without us,” and so it is, of course, essential that people with aphasia be involved in these discussions and efforts to disrupt ableism.

Figure 2.

Actionable next steps to begin challenging ableist beliefs and practices that affect people with aphasia.

Challenges

One challenge we experienced in our discussion of this framework was contradictions between conceptualizing aphasia through a social model and striving to meet the traditional goals of language rehabilitation via speech-language treatment. To better understand how to co-conceptualize disability-affirming practices and language treatment, we identified two models that unify tenets from medical and social philosophies of disability. The International Classification of Function, Disability and Health (ICF; World Health Organization, 2001) arose as a prominent example in rehabilitation (Cerniauskaite et al., 2011; Lexell & Brogårdh, 2015; Simmons-Mackie & Kagan, 2007). The ICF is a biopsychosocial model that describes disability as a product of interactions between body function (e.g., arm strength), personal factors (e.g., age, sociocultural identity, duration), and the environment (living conditions, access to support, etc.). Historically, the ICF has supported rehabilitation practitioners in recognizing sociopolitical factors of disablement and adopting common language around disability (Jette, 2006; Sharp & Herrman, 2021). However, critics of the ICF draw attention to language in the ICF that paints disability as a negative and objective reality based on biological “deviations” (Mosleh, 2019).

We propose that, as an alternative to the ICF, the political/relational model of disability (Kafer, 2013) is well suited to the field of speech-language therapy (Hersh et al., 2022; Smith & Baylor, 2023; St. Pierre & St. Pierre, 2018). The political/relational model proposes that disability is defined by the sociohistorical context in which it occurs and stems from inaccessible spaces and discriminatory attitudes and ideologies (Kafer, 2013). Through this conceptualization, disability is not an inherent truth but rather an experience defined by relationships among people, institutions, and ideologies. We found Kafer's conceptualization useful in mitigating the tension between disability-affirming practices and language treatment while also decentering norms related to body function and structure. Below, Kafer (2013) discusses medical intervention through the lens of the political/relational model:

By my reckoning, the political/relational model neither opposes nor valorizes medical intervention; rather than simply take such interventions for granted, it recognizes instead that medical representations, diagnoses, and treatments of bodily variation are imbued with ideological biases about what constitutes normalcy and deviance. In doing so, it recognizes the possibility of simultaneously desiring to be cured of chronic pain and to be identified and allied with disabled people. I want to make room for people to acknowledge—even mourn—a change in form or function while also acknowledging that such change cannot be understood apart from the context in which they occur. (p. 6)

Kafer's conceptualization leaves room for people with aphasia to simultaneously desire a change in their language functioning (i.e., through spontaneous recovery and/or speech-language therapy), while acknowledging that their (and others') response to aphasia is influenced by the broader context in which it is occurring. We are hopeful that models like the political/relational model will galvanize rehabilitation practitioners and scientists to continue the pursuit of lessening difficulties and discomfort experienced by people with aphasia while simultaneously working to dismantle the systemic and structural beliefs about “normal” communication that exacerbate these challenges. In this way, continuing to explore tension between critical disability studies and rehabilitation can highlight underacknowledged assumptions and lead to productive discourse that fosters a broader perspective on the nature of the human body and what constitutes a good life (Mosleh, 2019).

Another related topic that arose in our discussion is that aphasia is acquired—often in adulthood. For many people, this results in a sudden change in disability status that can be long-lasting. Those with acquired disabilities, including aphasia, often experience identity loss (Meyerson & Zuckerman, 2019; Smart, 2008). For example, in the book, Identity Theft: Rediscovering Ourselves After Stroke (Meyerson & Zuckerman, 2019), Debra E. Meyerson describes the initial disruption that her stroke and aphasia caused to her identities of college professor, athlete, and researcher. She discusses that this disruption can result in one's rejection or denial of their impairments, a resistance to acknowledging the need for supports and accommodations, and a desire to cling to one's prestroke identity. Through reevaluation, self-exploration, and self-discovery, she describes the process of discovering her evolving identity as a stroke survivor, which she hopes will empower others to reclaim and rediscover their own identities following stroke (Meyerson & Zuckerman, 2019). Compared to people with congenital disabilities, people with acquired disabilities are less likely to develop a disability self-concept, which may manifest as (a) being less likely to identify as disabled, (b) having lower disability self-efficacy (i.e., the belief one can achieve valued goals with their disability), and (c) having lower satisfaction with life (Bogart, 2014). In addition to the effect of acquiring a disability later in life, the circumstances leading to aphasia are often traumatic (Baker et al., 2020). This can be true for aphasia due to an acute, precipitating event such as a stroke or traumatic brain injury, or for a longer, neurodegenerative process as with primary progressive aphasia. For these reasons, the experiences of people with aphasia and other acquired communication disabilities may not be comparable to the experiences of those who have had communication disabilities since birth and/or childhood (Bogart, 2014; Bogart et al., 2012; Li & Moore, 1998). However, we note that much of the discourse we have encountered thus far has focused on the impacts of ableism on members of the latter group. This further illustrates the need for increased work focusing on the experiences of people with acquired communication disabilities.

For people who acquire aphasia, internalized stigma due to a lifetime of exposure to systemic ideas about “normal” communication while living as a nondisabled person is a unique and complex aspect of rehabilitation that is critical to keep in mind (for general discussion on internalized stigma, see Smart, 2008). It is important to acknowledge that for some people with aphasia, such internalized stigma—and the pressure to communicate in a manner that aligns with societal norms—may be the motivating factors for seeking language rehabilitation services. These reasons may reflect an effect of systemic ableism, in that they may partly reflect a desire to appear or become nondisabled. These reasons may also reflect a desire to alleviate discomfort associated with having a communication disability. We believe it would be misguided to discourage or refuse to provide services to a client who wishes to rehabilitate their language system (see Henner & Robinson, 2023). Rather, we believe that providing speech-language therapy and being anti-ableist are not mutually exclusive. Clinicians can provide trauma-informed services that acknowledge the validity of the experiences of people living with aphasia and the goals that stem from this reality. At the same time, clinicians can support the development of disability self-concept by consistently communicating that disability is not inherently negative, that valid communication takes many forms, and that living a good, full life can be possible with aphasia.

Conclusions

Both people with aphasia and speech-language therapists live in an ableist world that views disabilities as inherently negative. Speech-language therapists and researchers are uniquely positioned to challenge this pervasive assumption. Overall, we found that applying the HSDF to aphasia was helpful in conceptualizing the real-world and oft-reported experiences of people with aphasia into categories with actionable implications. In fact, it helped us address one of the questions that arose at our roundtable discussions, which was, “What's next? What can we do to reduce ableism experienced by people with aphasia?” The HSDF can provide guidance toward identifying ways to reduce drivers of stigma and increase positive facilitators of awareness, access, and inclusion. Using a framework like the HSDF to advocate for social change can have downstream effects and outcomes that can be measured to monitor the effectiveness of anti-ableist initiatives. In the meantime, support services specifically equipped to address stigma and discrimination should be made available to people with aphasia, and disability-affirming practices should be integrated into speech-language therapy. Although the current article demonstrates the feasibility of applying the HSDF to aphasia, the stigma and discrimination examples and potential next steps provided in Figures 1 and 2 are preliminary. Developing a comprehensive view of stigma and discrimination in aphasia must include the perspectives of people with aphasia and the insights of care partners. Appreciative inquiry approaches in combination with supported conversation techniques can be used to engage patient partners with aphasia in collaborative, patient-centered research initiatives (Brice & Hinckley, 2022) and would be well suited to identifying experiences of stigma and discrimination and next steps to create a future desired by people with aphasia. Appreciative inquiry centers around positive change and is guided by four principles (a) discovery, identifying what is going well regarding people's experiences of aphasia; (b) dream, imagining an ideal future; (c) design, specifying what can be done to create this ideal future; (d) action and implementation, devising actionable steps and subsequent implementation (Cooperrider & Whitney, 2000). Appreciative inquiry with small groups of people with aphasia, caregivers, and clinician and researcher partners may be a feasible first step in the endeavor to promote positive change in the areas of ableism, stigma, and discrimination.

We recognize that ableism is a complex topic and acknowledge that there are many unanswered questions about the intersection of ableism and aphasia. We hope that this introductory article (and those cited herein) can serve as a springboard for increasing discourse and promoting further investigation regarding the impact of ableism on people with aphasia and other acquired communication disabilities. We view such inquiry as a necessary step for our field as we work to dismantle ableist practices in therapy and research.

Data Availability Statement

Data sharing is not applicable to this article as no data sets were generated or analyzed during the current study.

Funding Statement

Kristen Nunn's time was supported by the Department of Veterans Affairs Office of Academic Affiliations, Advanced Fellowship in Geriatrics, of the Veterans Affairs Pittsburgh Health Care System and the Department of Veterans Affairs Pittsburgh Geriatric Research, Education, and Clinical Center (GRECC). Victoria Tilton-Bolowsky's time was supported by National Institute on Deafness and Other Communication Disorders (NIDCD) Grant R01DC05375. Ayelet M. Kershenbaum's time was supported by an NIDCD Institutional Training Grant (T32DC000038) and NIDCD Grant R15DC019231.