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Disability in Speech and Hearing Sciences: Reflections on Representation Amy L. Donaldsona
Purpose: This article reflects on a diversity and equity view of disability and offers a perspective on the representation of disability within speech and hearing sciences in terms of membership, research, and pedagogy. Conclusions: All areas of representation can be improved to support American Speech-Language-Hearing Association’s strategic objectives of increasing diversity of membership and improving cultural competence. American SpeechLanguage-Hearing Association is encouraged to collect data regarding disability status to inform understanding
of disability representation and potentially increase positive exposure, retention, and recruitment of disabled professionals. Research can be impacted through use of participatory models and focusing on community experiences, diversity issues, and increased understanding of the impact of ableism on clinical practice. Finally, curriculum specific to disability issues is needed to support students’ understanding of the variability inherent within the disability community and their role as clinicians in partnering with the disability community.
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Speech and hearing science (SPHS) professionals1 may be familiar with, or at least not surprised by, these statistics. Partnering with the disability community is a principal part of a SPHS professional’s job. Additionally, professionals work daily with individuals representing a wide range of racial, ethnic, gender, sexual orientation, socioeconomic status, geographic, and religious communities. Given these factors, the SPHS profession has increasingly reflected on its preprofessional training related to cultural competency and the recruitment and retention of minority community members to increase representation of the diverse communities with whom professionals partner. However, these efforts have focused primarily, if not exclusively, on racial and ethnic minorities, as well as members of the Lesbian, Gay, Bisexual, Transgender, Queer (LGBTQ+) community (Bellon-Harn & Weinbaum, 2017; Mahendra, 2019; Stockman et al., 2008). Thus, the aim of this article is to discuss the representation of disability within the SPHS discipline, as it relates to membership, research, and pedagogy.
isability is the largest minority group in the United States. Disability affects approximately 25.7% of adults (61.4 million) and is more likely in women, older people, Native Americans and Alaskan Natives, adults with low incomes, and adults living in Southern states (Okoro et al., 2018). According to Zhao et al. (2019), a higher percentage of adults with disabilities live in rural areas than urban areas. In addition, health disparities such as lower socioeconomic status, difficulties with transportation, access to education and vocational services, and access to health and community all present additional barriers for rural people with disabilities (Sage et al., 2019). Approximately one in six children aged 3–17 years were diagnosed with a developmental disability between 2009 and 2017 (Zablotsky et al., 2019). From 2018 to 2019, 7.1 million children received special education services under the Individuals with Disabilities Education Act, representing 14% of total U.S. public school enrollment. Children with specific learning disability were the most frequently represented (33% of students receiving services), followed by students with speech or language impairment (19%), and then by children with reported hearing loss (1%; Hussar et al., 2020). a
Department of Speech and Hearing Sciences, Portland State University, OR Correspondence to Amy L. Donaldson: adonald@pdx.edu Editor-in-Chief: Brenda L. Beverly Editor: Laura B. Green Received September 2, 2020 Revision received December 11, 2020 Accepted March 2, 2021 https://doi.org/10.1044/2021_PERSP-20-00228 Publisher Note: This article is part of the Forum: Celebrating the 50th Anniversary of ASHA’s Office of Multicultural Affairs.
Disability as Diversity The American Speech-Language-Hearing Association (ASHA) recently celebrated the 50th anniversary of the establishment of the Office of Multicultural Affairs. Disability is included in ASHA’s definition of culture and cultural 1
Professionals refer to speech-language pathologists, audiologists, speech-language pathology assistants, and speech and hearing science researchers. Disclosures Financial: Amy L. Donaldson has no relevant financial interests to disclose. Nonfinancial: Amy L. Donaldson has no relevant nonfinancial interests to disclose.
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diversity (ASHA, n.d.-a). In recent years, professional fields have recognized the need for increased education related to a diversity and equity framework of disability and the explicit representation of disability within their professionals membership (e.g., Andrews et al., 2019; Moore et al., 2020; Smith et al., 2011). The d/Deaf and disability communities have been advocating for their rights and establishing their collective cultural and political identities for decades (e.g., Charlton, 2000; Padden & Humphries, 2005; Shakespeare, 2006). As such, disability is not only defined by a medical perspective focusing on an individual’s impairment and/or condition (e.g., Americans with Disabilities Act, 1990), but by disability culture (Brown, 2002; Dupré, 2012; Robey et al., 2013). Brown (2002) described disability culture as sharing four common features: (a) shared beliefs, artifacts, and expressions created by disabled individuals to describe their lived experiences; (b) disabled people also belong to other cultures; (c) regardless of disability or geographic location, disabled people have experienced oppression related to their disability; (d) disability culture may differ across different geographic locations, but disabled individuals have similarities across the first three areas.
Models of Disability There are several models of disability. The most common model, a medical model of disability, views individual factors (physical, psychological) as the primary causes of disability and places the responsibility for “overcoming” or “defeating” barriers on the individual. From this perspective, those with disabilities are often presumed to have a poor quality-of-life and desire to be nondisabled (e.g., Faulkner, 2019; Young, 2014). In contrast, a social model of disability identifies society’s role in creating barriers to the disabled individual’s2 access, agency, and self-determination. Within this model, disability is judged to be created primarily by barriers within one’s environment (e.g., physical/structural barriers, societal attitudes; Finkelstein, 1980; Oliver, 1990). A social adapted model, or biopsychosocial model, of disability recognizes both an individual’s impairment and the role of society in disability. This model, consistent with the World Health Organization’s International Classification of Functioning and Disability model (World Health Organization, 2007; Westby & Washington, 2017), recognizes individual impairments and supports mediating such challenges, while also addressing environmental modifications, accommodations, and societal attitudes (Donaldson et al., 2018). Within a cultural competency framework, professionals should be familiar with the different models of disability and recognize the societal default toward the medical model. In addition, to promote successful partnerships with clients and stakeholders, it is important for SPHS professionals to honor and support individuals who espouse perspectives that may differ from their own personal views of disability.
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Intentional use of identity-first language. For a discussion of identityfirst language, see Gernsbacher (2017).
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Ableism Fundamental to one’s understanding of disability is the impact of ableism on society’s perceptions, beliefs, and values related to disability. A comprehensive discussion of ableism is beyond the scope of this article (see Campbell, 2009; Nario-Redmond, 2020), but it is essential for SPHS professionals to recognize these attitudes and have a clear understanding of this concept. Campbell (2009) described ableism as a network of beliefs and practices that favors an ideal nondisabled standard, whereby “disability is cast as a diminished state of being human” (p. 44). Chouinard (1997) further defines ableism as “ideas, practices, institutions and social relations that presume ablebodiedness, and by so doing, construct persons with disabilities as marginalisied” (p. 380). Ableism manifests in prejudice and discrimination toward individual people, but also shapes general societal attitudes and policy (i.e., institutionalized ableism; Nario-Redmond, 2020). As a profession that partners daily with the disability community, it seems imperative that SPHS professionals demonstrate an understanding of the complexity of disability and the ubiquity of ableism (Nario-Redmond, 2020), as well as the variability represented within the disability community. Strategies that could be undertaken to that end could include increased representation in the profession through professional initiatives and academic recruitment, authentic disability participation in research, and use of a cultural competency framework in teaching.
Disability Representation and SPHSs In recent years, health care and SPHS disciplines have focused on increasing representation of minority communities (i.e., recruiting and retaining the number of professionals from minority communities) in order to provide essential care in a culturally competent manner (Attrill et al., 2017; Cohen et al., 2002; Grandpierre et al., 2018; Guiberson & Vigil, 2020; McCalman et al., 2017). As the largest minority community, it would follow that recruitment and retention of the disability community would fall within the goal of increasing minority community representation in such professions. This would also include recruitment and retention of disabled students to professional degree programs and the use of a cultural competency framework within preprofessional training. However, in health care fields, focused efforts to increase and/or encourage disabled candidates (e.g., accessible work environments, flexible schedules, openness to disclosure) are often limited or not included as part of recruitment efforts (Wong, 2020) and disabled students have reported challenges and intimidation pursuing preprofessional training (Andrews et al., 2019). Professionals and Recruitment to the Profession Disability representation can take many forms. As disability is the largest minority group, one might first investigate the number of disabled individuals within the profession. An extensive search of ASHA’s website found no
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published information regarding the number of certified members self-identifying with disabilities. Based on this member’s account, it appears that ASHA asks the following confidential demographic information: sex, ethnicity, and race. A review of the ASHA School Survey (ASHA, 2018) revealed aggregated demographic data for schoolbased service providers in the following areas: geographic region, population density, degree earned, years employed, age, gender. While disability disclosure is a personal and often controversial topic, given the potential stigma it can create (Lindsay et al., 2019), aggregated disclosure of demographic data (ethnicity, gender) is often used to guide discussions of institutional diversity, equity, and inclusion. Therefore, collection and subsequent release of aggregate data related to disability status may be a first step to increased representation of disabled professionals within ASHA, as well as recruitment of disabled individuals. As a discipline that serves the disability community, one might argue it is even more imperative for clients to see disabled professionals among those within the SPHS profession. This goal of increased recruitment is in alignment with ASHA’s stated goal of actively promoting “careers in CSD professions to historically under-represented groups to ensure a diversity of experience and breadth of perspective among the membership” (ASHA, n.d.-a). Recruitment and retention of disabled individuals within SPHS would not only increase diversity within the profession, but it may also decrease ableism. Shannon et al. (2009) found that disabled people “recognized as holding expert power” influence and promote positive attitudes toward the disability community. They stated: …social justice for persons with disabilities should be a major focal point of service providers in rehabilitation. A form of social justice for persons with disabilities would be to assist in the dismantlement to employment and equal access to services that are often the result of negative attitudes (p. 16). Other professions have also started to address the issue of disability representation. For example, in rehabilitation psychology, Andrews et al. (2019) discussed the advances in culturally appropriate language use (e.g., use of identityfirst language; #SaytheWord campaign3) and recognition of disability culture within the American Psychological Association in recent years. Yet, they also noted that while representation of other minoritized communities has increased, disability representation has not. Furthermore, they documented the challenges experienced by disabled student trainees seeking mentorship and support, as they are anxious regarding disclosure of their disabilities (Andrews & Lund, 2015). As a result, they made several recommendations for 3
The #SaytheWord campaign refers to the disability advocacy campaign that encourages people to say the word disability, rather than an alternative language and use of euphemisms (e.g., special needs, differently abled). The campaign is intended to promote disability pride and identity.
nondisabled professionals, including centering disabled perspectives in research, learning about the disability justice movement, normalizing the word disability, and honoring language preferences. Additionally, Meeks et al. (2018) examined the experiences of 47 students, residents, and physicians with disabilities. The participants recommended a number of ways to increase access and reduce barriers for disabled students in health care professions, including (a) educate people about the social model of disability, (b) increase the number of disabled professionals as mentors, and (c) provide reasonable accommodations to reduce barriers. Furthermore, they reported experiencing unconscious bias, additional financial burden, “feeling the need to perform twice as well as peers to be accepted” (p. 541), stigma, the need for self-advocacy for basic services, and both indirect and direct messages that they did not belong. Finally, the authors recommended that programs (a) identify opportunities to address access and admissions for disabled learners; (b) engage with disability community members and invite their participation on advisory committees; and (c) integrate disability into diversity initiatives, language, and policies. Currently, there appear to be no readily available data regarding disability representation for ASHA members. In order to adequately research the representation of disability within SPHS, it seems appropriate for ASHA to start tracking disability status. Increased understanding of disability community representation with the profession would then allow for targeted planning specific to retention and recruitment of disabled individuals to the profession. In addition, programmatic changes in SPHS education and focused attention to recruitment of disabled students can promote increased representation of disabled students, and ultimately professionals. Research Representation Within traditional research models, disability community members typically serve as research participants, but rarely as research team members. This may create a disconnect between research and the community, leading to feelings of mistrust by the community. Raymaker and Nicolaidis (2013) stated, “Studies that are conducted on minority ‘subjects’ without understanding either the community’s culture or the individuals who comprise the population may suffer from comprised sampling, weak study validity, and low intervention effectiveness.” (p. 169). Community-based participatory research (CBPR) is a research methodology developed to address these issues by engaging minoritized community members as full partners in the process, including research design, intervention development, and policy-making (Belone et al., 2016). According to Raymaker and Nicolaidis (2013), in a participatory research model, a minority community shares its values, priorities, and beliefs, and its cultural expertise and resources with scientists. Scientists share their resources, facilities, expertise, and credibility, which a community might leverage for advocacy. The scientist might still provide intervention or treatment, but the community is directing Donaldson: Disability in Speech & Hearing Sciences
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the agenda. As such, the outcomes are authentic and more socially valid to the community. Outcomes can lead to increased advocacy, that can influence mainstream society and result in research funding. An example of CBPR within the disability community is the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) directed by Raymaker and Nicolaidis (2013). AASPIRE is a CBPR group inclusive of researchers, autistic adults, and people who support individuals on the autism spectrum collaborating “to develop and implement research studies that truly benefit the autistic community” (AASPIRE, n.d.). To date, the group has collaborated on projects in four major areas of importance to the autistic community (outcomes, health care, employment, and autistic burnout), resulting in a total of 20 publications. In addition to use of such participatory research models, SPHS can demonstrate cultural competence through inclusive literature practices. Inclusive literature practices refer to the inclusion of disabled authors and creators in scholarly works. Historically, disabled authors have not often been included in the formal research publication process; thus, their work is frequently published via popular media, social media (e.g., Twitter), or other formats (e.g., blogposts). Inclusion of disability community viewpoints is fundamental to our understanding of disability, and inclusion of such work within scholarly work is necessary to disseminate and amplify disability messages. Additionally, scholars are strongly encouraged to use the language preferences articulated by the community itself (Andrews et al., 2019; APA, 2020). The American Psychological Association’s Style Guide 7th Edition (2020) states, “If you are unsure of which approach to use, seek guidance from the self-advocacy group or stakeholders specific to the group of people” While many journals have modified their editorial guidelines to recognize that the disability community, for the most part, prefers identity-first language, some journals have not yet done so. As an individual scholar, I use identityfirst language, person-first language, or both, depending on the context and community, and provide evidence, if needed for the specific publication. Finally, SPHS should consider inclusion of disability community members on editorial boards,4 convention review boards, and advisory committees. Analogous to the participatory research model, disabled individuals participation in these scholarly endeavors is needed to ensure that community perspectives are centered. An additional way to promote cultural competence is through investigation of topics inclusive of disability community perspectives. For example, SPHS researchers might examine disability culture, ableism, and models of disability as they relate to SPHS topics and service providers. Recently, Wilson and Atcherson (2017) discussed audism and its implications for professionals (particularly audiology).
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Autism in Adulthood includes openly autistic Editorial Review Board Members. https://home.liebertpub.com/publications/autism-in-adulthood/ 646/editorial-board
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Audism, similar to ableism, is specific to discrimination toward people with hearing loss. They completed a search of the audiology literature and found no peer-reviewed articles on the topic of audism. Wilson and Atcherson argued for discussion of audism in the SPHS curriculum, research on the experiences of d/Deaf and hard of hearing people who receive services from professionals who are fluent in sign language, and examination of professionals’ attitudes related to Deaf individuals who use sign language, as compared to individuals who use oral/aural methods to investigate potential implicit biases. Similar to Wilson and Atcherson (2017), a search of the speech-language pathology literature on the topic of “ableism” was completed. Using the ASHA-specific search engine (ASHAWire), five results were identified; two included discussions of ableism—Wilson and Atcherson and Robinson and Norton (2019). Robinson and Norton discussed racism, ableism, and the stigmatization of special education within the context of a study examining disproportional representation of African American children in schools in the category of Speech/Language Impairment from the years 2004–2014. They that found that 75.3% of states disproportionately represented African American students. Robinson and Norton discussed the clinical implications of professionals’ often unintentional harmful choices (fragmented harm theory5) and how they may “perpetuate the racism and ableism present in the system” (p. 276). An additional multidatabase search (ERIC, PsycInfo, MedLine) inclusive of the terms speech-language pathology and ableism revealed no further articles regarding the topic generated from within the SPHS field. Finally, a search of the topic of “social model of disability” was completed using the ASHA-specific search engine (ASHAWire); 14 results were identified. Twelve of the articles focused on the social model as a framework or context for interpreting results and/or recommending practices. Two of the articles mentioned the model, but it was not a primary or fundamental part of the framework or practice. Consistent across the articles that endorsed the social model was encouragement of SPHS professionals to increase their understanding of the lived experiences of disabled individuals and disability culture. A variety of communities were represented within the articles including people who stutter (Boyle, 2016; Boyle et al., 2016; O’Dwyer et al., 2018), AAC users (Patel & Threats, 2016), autistic individuals (Angulo-Jiménez & DeThorne, 2019; Donaldson et al., 2017; Vidal et al., 2018), and children with speech and language disorders (Lyons & Roulstone, 2018). Overall, reframing research methods to fully partner with disability communities has the potential to increase prioritization of disability community research goals and the social validity of results, and may support implementation 5 Fragmented harm theory refers to multiple factors that create racial/ethnic disproportionality. These factors are created by multiple sources from within a system (educational) and made by individuals unintentionally; thus, they do not realize they are perpetuating harm. See Robinson and Norton (2019) for further discussion.
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of findings within the community. In addition, the profession can benefit from increased focus on cultural competence in research literature practices. Examination of topics pertinent to the disability community, such as ableism, disability culture, and models of disability and how these issues interact with service provision is recommended, as is attention to language preferences and inclusion of disability community members on editorial, advisory, and review committees. Curricula Representation The 1993 ASHA certification standards required programs to include coursework that addressed issues pertaining to human development and behavior across the life span and with culturally diverse populations. Current standards require demonstrated knowledge of linguistic and cultural correlates related to multiple areas of communication, hearing, and swallowing, including assessment and intervention. Additionally, students complete supervised practicum with individuals from culturally/linguistically diverse backgrounds and a variety of disorders, differences, and disabilities (Council for Clinical Certification in Audiology and Speech-Language Pathology of the American Speech-Language-Hearing Association, 2018). Stockman et al. (2008) completed a survey of programs accredited by the Council on Academic Accreditation in Audiology and Speech-Language Pathology (CAA) to examine multicultural content within the curricula. Results indicated that 77% of respondents were strongly committed to infusing multicultural issues into SPHSs curricula. Based on this survey and a sample of 13 syllabi from multicultural classes in SPHS departments, an analysis of course content was completed (ASHA, n.d.-b). According to the 13 syllabi, a total of 14 different cultural groups were discussed across the courses. Disability was not represented; however, the Deaf community was represented in three of the 13 syllabi (ASHA, n.d.-c). In 2011, Yu and Epstein examined the effects of varied curricular approaches to disability issues on student perceptions. Through a series of reflective essays, they found that the majority of students held a medical model view of disability at baseline. When a traditional instructional approach was maintained, student views were maintained. In contrast, when a social model of disability was explored, student essays reflected an increase in a social approach. When a case study was introduced, the students demonstrated mixed approaches (i.e., a combination of social and medical models—social adapted). The authors stated, “in the absence of explicit exposure to different frameworks for understanding disability, most students likely will hold unexamined beliefs that are strongly aligned with a medical perspective.” (p. 19). For the past 4 years, Portland State University has offered an elective course specific to disability. The course introduces students to perspectives on disability and ableism, examining definitions of disability and the history of disability, particularly as it relates to communication and clinical practice. They investigate the influence of media
on perceptions of disability and discuss how models of disability influence approaches to service provision, communication choice, intervention, and education. An emphasis is placed on learning from and amplifying the messages of marginalized communities, as such the content primarily includes disabled scholars, authors, bloggers, artists, and other contributors from varied communities. Intersectionality is a key part of the discussion of disability. The course has been well-received and well-attended. Students have commented that the course should become a required part of the curriculum; indeed, portions have been infused into required classes at undergraduate and graduate levels. Overall, disability representation within SPHS curricula is lacking. SPHS students will soon be working daily with disabled individuals. Students need to be prepared to partner with any member of the disability community, recognizing that individual’s goals, values, and/or beliefs.
Conclusions ASHA has articulated eight objectives as part of their Strategic Pathway to Excellence. Objective 6 is to increase the diversity of ASHA membership and Objective 8 is to increase members’ cultural competence (ASHA, n.d.-c). Both align well with increasing disability representation in the profession. With the recent 30th anniversary of the passing of the Americans with Disabilities Act and the 50th anniversary of the establishment of the ASHA Office of Multicultural Affairs, it seems now is a perfect time to move forward.
Acknowledgments The author wishes to thank Dora Raymaker for early conversations on the topic of disability within SPHS and Gerasimos Fergadiotis for discussion and review.
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