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Scholarly Perspectives

No Taxation Without Representation: Addressing the “Deaf Tax” in Academic Medicine

Aldalur, Aileen PhD1; Hall, Wyatte C. PhD2; DeAndrea-Lazarus, Ian A. MPH3

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doi: 10.1097/ACM.0000000000004685
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Abstract

Underrepresentation of minority individuals (including race and ethnicity, disability, sexuality, and other communities) in academic medicine is an ongoing problem. 1–3 Minority faculty and trainees experience unique conditions that can hinder their success in academic medicine—collectively referred to as “minority tax.” 1,4,5 Minority tax is defined as the additional responsibilities, burdens, and stressors encountered within the workplace due to one’s minority status. 1 Examples include experiencing racism and discrimination, isolation and exclusion, lack of mentorship opportunities, different clinical expectations, inequities in promotions, having to defend one’s race and/or cultural background, being considered primarily responsible for diversity efforts, and carrying the burden of code-switching. 1,4,5 Similar to the concept of minority tax, we argue that a “deaf tax” consisting of unique barriers, experiences, and responsibilities disproportionately burdens deaf trainees and faculty in academic medicine.

The deaf community is a heterogeneous group consisting of individuals with varied hearing statuses, languages, communication preferences, and sociocultural norms. 6 Within this community, many deaf individuals consider themselves to be part of a unique culture with their own language (i.e., American Sign Language [ASL]), customs, and values. 7 Some members of Deaf culture do not consider themselves to be disabled, while others accept an intersectional identity of disability. 8 The complex interplay between culture and disability for deaf individuals poses unique challenges for deaf professionals within the workplace since they are required to accept some level of disability status to receive accommodations. 9 The number of deaf individuals in academic medicine has grown as a result of legal support such as the Americans with Disabilities Act (ADA), technological advances, and programs intentionally meant to recruit deaf trainees. 9,10 Academic medical centers, however, continue to lag in the knowledge, sensitivity, and infrastructure to support an equitable and inclusive environment. 2,3,11–14

We are 3 deaf professionals from psychology, public health, and medical backgrounds who currently work within a large academic medical center. We have personally experienced various forms of deaf tax throughout our education, training, and work experiences. Through a combination of relevant literature from academic medicine and related fields (e.g., academia, public health) and our personal experiences as deaf professionals, we outline several causative domains of deaf tax below. In addition, we offer a number of practical steps for institutional leaders and policy makers to consider implementing to create a more equitable and inclusive environment.

The Deaf Tax

The fight for reasonable accommodations

The ADA mandates that institutions provide people with disabilities “reasonable accommodations” to enable the same educational and professional success that people without disabilities enjoy. 15 Often, however, reasonable accommodations are determined by nondisabled staff and administrators who—without the daily life experiences and expertise of having a disability—can create inefficient, burdensome processes and structures. What may appear “reasonably” legally compliant with the ADA to non-disabled staff and administrators may not actually be effective in practice to achieve the outcomes the ADA is meant to promote. 16

At the majority of institutions, an ad hoc approach is taken to providing accommodations for deaf people (e.g., ASL interpreters, real-time captioning, etc.). Such a system frequently requires deaf professionals to perform at least an extra hour of unpaid labor every week (and ranging up to 10 hours in extreme situations) to coordinate their accommodations, 10 including managing upward of a dozen emails for each request. 17 In addition, an ad hoc system frequently requires deaf professionals to plan at least 48–72 hours in advance for any accommodation requests. 9 This prevents equitable access to last-minute meetings, emergent supervision or consultation needs, clinical emergencies, workshops, and other incidental events that are a normal part of academic medicine settings. When deaf professionals have to take on the role of being their own access coordinator, it becomes a significant time and energy sink, and diverts them from professionally meaningful activities. 17 Without protected administrative time, it amounts to unpaid labor for legally mandated access.

An ad hoc approach to accommodating deaf professionals also increases the likelihood of unqualified (for the context) interpreters being provided—harming learning, networking, and work environment participation, and increasing the risk of misrepresentations during high-stakes meetings, presentations, and clinical work. 2,17,18 The risks of using unfamiliar interpreters for high-stakes situations are compounded by the fact that interpreting errors are often attributed to deaf people instead of the interpreters, encouraging beliefs and stereotypes of deaf people being less intelligent and knowledgeable in their chosen fields. 19 In these situations, deaf professionals must not only focus on the quality of their own responses but also worry about the accuracy of the interpretation. Deaf professionals can also be “held hostage” to the choices that interpreters make in professional settings. One of the current authors experienced such a situation when they gave a public introduction of a keynote speaker. They chose to prewrite the introduction in English to ensure the interpreter would voice it accurately; however, the interpreter chose to ignore the prewritten remarks and instead attempted to interpret their signed remarks directly, resulting in many inaccuracies. It was not until after the presentation that the author was told what the interpreter had chosen to do and that the public perception of their introduction had not been positive.

Clinical work may pose additional challenges for ad hoc interpreters who do not have specialized training, expertise, and experience in such settings. Two of the current authors experienced interpreters unprepared for the emotional intensity of psychiatry sessions that resulted in emotional breakdowns, with the interpreters sometimes prematurely leaving the sessions. Another author experienced situations in the operating room and medical classroom where unprepared interpreters experienced vasovagal syncope (i.e., fainting) at the sight of blood during medical procedures.

The provision of accommodations under an ad hoc, minimal legal compliance approach can have a cumulative negative effect on both education and career outcomes for deaf professionals in academic medicine. Chronic exclusion from last-minute academic scheduling, educational and training opportunities, networking, incidental learning, collaborating with colleagues, and other commonplace aspects of academic medicine environments harms deaf professionals’ opportunities for education and career advancement. 13,17 Many of the situations described above could be avoided through the provision of designated, full-time accommodations in the workplace, and by consulting with deaf employees to determine the most effective accommodations for their work. 9 Such accommodations allow deaf professionals to ensure that the interpreters or other required accommodations are qualified, prepared, and effective for the nature of their work.

Prejudice and discrimination

Deaf professionals often experience overt and covert discrimination. Discrimination can occur before deaf professionals are even accepted or hired for a position. Micro- and macroaggressions during the application and interview process are so commonplace that many deaf individuals do not self-identify as deaf during the application process; instead, they hold off until they are forced to disclose their disability status to obtain accommodations. 20–22 Instances of interview and job offers being retracted after disclosing being deaf and/or needing accommodations are also common. 20,23,24 For example, a deaf medical student successfully sued Pacific Northwest University College of Osteopathic Medicine after their admission offer was withdrawn due to concerns about accommodation costs and “patient safety.” 25 Also, a deaf nurse successfully sued John Hopkins Hospital after their job offer was retracted due to department-level concerns about access costs, establishing precedent that institutions are centrally responsible for access budgets rather than individual departments or programs. 26

During interviews and networking meetings, valuable time is wasted with inappropriate inquiries about a deaf professional’s hearing status, lip-reading skills, and speech ability, and questions about the process and cost of using an interpreter, rather than focusing on the professional content of the meeting. 11,17 In 1998, deaf doctoral students reported experiencing inappropriate questions and comments during their interviews for clinical psychology internships, including “How did you become deaf,” “Tell me all of the accommodations you required during your training and how much they cost,” and “I can’t imagine having a deaf intern here.” 11 Two decades later, one of the current authors experienced similar questions and comments during their own internship interviews, including “Can you lip-read,” “Who is going to pay for your interpreters,” “We do not do interpreters here,” and patronizing comments praising their signing or speaking skills—suggesting little progress has been made in the interim decades.

Even when deaf professionals are accepted into programs or hired by institutions, discrimination can occur when extensive self-advocacy and social capital is needed to receive basic accommodations—especially when requests are initially denied. 2,17,20,23 Reasons for accommodation denial include having one’s accommodation requests ignored; scheduling errors; suggestions for the deaf professional to provide their own interpreter; or discouraging the deaf professional from attending “professionally unnecessary” meetings, events, and/or duties to reduce institutional costs. 12,21,24,27 Self-advocating in a manner that does not reinforce negative attitudes or create an “angry deaf person” stereotype requires a significant amount of mental and emotional energy and time. In one specific situation, one of the authors received a threat of a referral to a professionalism committee for trying to address a conflict where discriminatory behaviors by hearing colleagues were negatively affecting a group of deaf professionals. The threat came after repeated requests for a mediated meeting were ignored. With the situation ultimately unresolved, all but one of the deaf professionals involved left the work environment in the following year.

Deaf professionals also encounter prejudicial attitudes and stereotypical beliefs including equating being deaf with lesser intelligence; having limited English abilities; not having “appropriate” social skills; or having deficits in job-related skills such as research, writing, or clinical work. 13,18,21,28 Cultural and linguistically minoritized individuals participating in White- and English-dominant institutions are often expected to engage in “code switching,” which involves changing their culturally rooted behaviors to more “appropriate” behaviors that match the White- and English-dominated social norms of academic medical centers. 29 Deaf individuals have reported the need to code switch (e.g., controlling facial expressions and body language that are normal parts of ASL and Deaf culture) when interacting with hearing individuals to avoid conflicts, barriers, and prejudicial attitudes, creating a general feeling of needing to suppress their cultural identities for professional success. 18,22,23 These negative attitudes create barriers to timely promotion and hamper the overall career path of deaf professionals. 21

Training and diversity barriers

Deaf professionals often encounter systemic barriers to completing clinical training and work due to unfounded concerns about working with hearing patients. 11,23 A frequent assumption is that deaf clinicians should only work with deaf patients. During interviews for clinical practicum training, one of the authors experienced resistance to invite them for a training position due to not having enough deaf patients to provide a full case load, despite the author’s intentions to receive general evidence-based training. The author was only able to receive such training after several meetings during which they repeatedly experienced questioning regarding the logistics of how they would work with hearing patients. Ultimately, the author was required to begin on a trial basis despite the fact that they had received the same training as their hearing cohort members and had previous clinical experiences with hearing patients. Similarly, there is often an assumption that deaf medical students want to work in a specialty that does not require as much patient contact as other specialties (e.g., radiology, pathology) and experience active discouragement of pursuing specialties that involve more verbal communication (e.g., neurosurgery, emergency medicine). 30,31

A significant portion of concerns about deaf clinicians are centered on the need to have an interpreter present and the assumption that such a presence is somehow disruptive or negatively experienced by patients. 11,23 Concerns about deaf clinicians’ use of interpreters are ironic given that hearing clinicians will routinely request interpreters for patients who are not fluent in English, including deaf patients. In actuality, our experiences and the experiences of our deaf colleagues in various fields suggest that generally patients are either neutral or positive about having a deaf clinician and by proxy, an interpreter. We have experienced positive comments from patients expressing belief that deaf clinicians are better able to relate to their own experiences of hardship. One of the authors had a positive encounter during a medical school assessment examination where they, working with their designated interpreter, had to deliver bad news to a hearing standardized patient. The standardized patient had such a positive experience with the author and their interpreter that they sent a letter to the program director stating that it was the best encounter they had ever had with a medical student.

Finally, diversity and equity-related pursuits are frequently devalued or not taken seriously as promotion-earning activities at academic medicine institutions. 1 Deaf professionals frequently feel compelled to take on both formal and informal education and training labor with their hearing colleagues to not only improve their own work experiences but also improve circumstances for current and future deaf professionals and patients. 17,18,20 Despite the significant time and energy invested in this labor, these efforts are often viewed as personal activities rather than a service to the institute. 17

Lack of deaf mentorship

Quality mentoring experiences are important for academic success, especially for minority individuals. 1,2,13 Mentors who share demographic characteristics with their mentees can help support them in navigating academic institutions as a minority—known as “navigational capital.” 2,32 In a survey examining key factors of success for deaf scholars, 2 of the 4 factors identified were navigational capital and communication access (i.e., access to information and opportunities for informal learning). 12 Beyond the basic expectations of becoming skilled clinicians, researchers, and academics, deaf professionals must also gain expertise in navigating institutions and ensuring equitable access to communication as a deaf person, devoting time to develop skills not typically necessary for academic success. Deaf mentors are uniquely qualified to directly model and teach these skills to foster the development of deaf trainees. 2 Indeed, deaf professionals who have deaf mentors (or at least mentors who are fluent in ASL and familiar with Deaf culture) generally have a higher number of publications and superior navigational capital skills than those who do not. 12

Due in large part to the small numbers of deaf professionals in senior positions within academic medicine, it is difficult for deaf professionals to receive mentorship from someone like them. 2 Often, deaf professionals have to seek additional mentors outside of their institution to fill in the gaps and meet their needs. The lack of quality mentors affects the presence of deaf professionals in a circular manner: the inadequate number of qualified mentors limits deaf professionals’ upward mobility, which in turn reduces the number of potential mentors for future professionals. For the few deaf professionals who obtain faculty and senior leadership positions, they are often called on to provide mentorship without having had the benefit of mentoring and guidance themselves. 13

Summarizing the Effects of the Deaf Tax

It is clear that the cumulative effects of the deaf tax create a significant disadvantage for deaf professionals in academic medicine. Generally, this has created a landscape where deaf professionals are more likely to be found (if at all) in low-ranking positions, even within programs purportedly serving the deaf community. As deaf professionals devote their time and energy to managing covert and overt barriers, the negative impact on their productivity and career development contributes to “evidence” of their limited abilities, reinforcing preexisting prejudicial attitudes and stereotypical beliefs.

The absence of deaf professionals within academic medicine, particularly in leadership positions, contributes to less diversity, creativity, and innovation in research and clinical work. This is seen in the minimal growth of health research on deaf individuals, an underserved population that experiences significant health disparities; the lack of education and training for health care workers in treating deaf patients, which perpetuates existing health disparities; the general dominance of nondeaf professionals running deaf-related programs and centers; and the systematic lack of institutional support for deaf professionals in clinical and research fields, among other issues.

Addressing the Deaf Tax in Academic Medicine

Covert and overt deaf tax barriers are not insurmountable. Several deaf professionals have succeeded in predominantly hearing institutions and achieved leadership positions, though this group is still very small. Here, we offer several strategies that have been successful in promoting deaf equity and inclusion within academic medicine. The strategies we propose are based on a combination of best practices for addressing minority tax, 1,4 literature on advancing opportunities for deaf scientists, 2,9,12,13,30 and our lived experiences as deaf professionals in academic medicine.

Facilitate language equity and communication access in the workplace

Full-time communication access is essential to foster opportunities for inclusion and career development. Thus, effortless full-time access to communication should be provided. The most beneficial, efficient, and cost-effective option is likely a designated interpreter 9 for deaf individuals who use ASL, or full-time designated access to real-time captioning or other accommodations as needed by deaf professionals—as opposed to an ad hoc scheduling system for specific events, classes, and meetings.

Institutional support that is matched to a deaf professional’s needs contributes to the choice of medicine as a career and career satisfaction among deaf physicians 10 and other deaf professionals. While the legal requirement and guidance is that employers generally have the right to choose “effective” accommodations, in practice institutions should follow the lead of the deaf professionals receiving the accommodations, allowing for adjustment to individual needs. 10 Deaf professionals should be actively included in deciding what constitutes “reasonable accommodations” as they are the experts of their own work, schedule, and needs as it relates to navigating hearing spaces. If deaf professionals must spend significant time coordinating their accommodations, they should be allotted protected time for such activities.

It is essential for institutions to move beyond mere compliance with the ADA and establish accountability procedures for acts of discrimination by including it in annual evaluations. 1

Raise institutional awareness and education about deaf individuals, Deaf culture, and ASL

Academic medical professionals are almost guaranteed to have encounters with deaf individuals whether through patient care, research, or colleagues. Thus, education and awareness of deaf individuals, Deaf culture, and ASL should be included in multicultural training curriculums and diversity efforts within academic medicine.

Deaf awareness training has successfully been used in workplaces to reduce barriers and address negative stereotyping of deaf professionals. 20 Institutions with deaf professionals, deaf-related programs, or significant numbers of deaf patients should consider implementing deaf awareness training for all employees.

More often than not, the responsibility for providing deaf awareness training falls on deaf professionals themselves as part of the deaf tax. 17,18,20,23 Thus, this work should be considered a valued diversity effort, and the time and effort should be rewarded appropriately 1—especially if deaf professionals are called on to provide this education and awareness training multiple times, serve as advocates for deaf patients across the institution, or conduct community engagement work.

Ensure effective mentoring for deaf professionals

Simply providing communication accommodations does not automatically mean a hearing mentor is an effective mentor. Hearing mentors should receive direct instruction in mentoring deaf professionals, including education about deafness, the deaf tax, and Deaf culture. 1,2,12,13

Mentoring with deaf professionals should include instruction in skills for navigating the institutional culture, developing effective networking strategies, proactively introducing deaf professionals to key institutional players, advocating for deaf professionals, fostering the development of self-advocacy skills, providing a safe place to process the emotional impact of microaggressions and stereotype threats, and fostering the development of healthy coping strategies. 2,12,23

If an institution is not able to match the deaf professional with an internal mentor who can meet their needs, the deaf professional should be assisted in identifying an external mentor. The deaf professional should have protected time to meet with their mentor and the institution should compensate the external mentor accordingly.

Prioritize deaf professionals to lead deaf-related activities at the institution

Institutions with deaf-related clinical services, research programs, and/or advocacy work should actively prioritize hiring, training, and promoting deaf professionals for leadership positions and should work collaboratively with deaf community members to ensure accurate representation of community priorities. Deaf leadership not only improves the overall quality of deaf-related research and service provisions but also creates natural-fitting advancement opportunities that otherwise do not currently exist.

It is becoming less acceptable that individuals not from marginalized groups lead research and other work focused on those communities. Deaf-related programs and research work that include deaf individuals only in lower-level positions should examine their leadership roles and advisory boards to ensure deaf representation is present.

Concluding Remarks

Addressing these issues would remove many obstacles that create the high deaf tax burden and lower the near-insurmountable barrier for deaf professionals of entry, advancement, and retention in academic medicine. The holistic inclusion of deaf professionals in academic medicine would do much to advance various allied fields by offering unique perspectives and strengths to address gaps in care for diverse vulnerable communities 14 and would foster a healthy, diverse, and inclusive environment that benefits all members of the academic and surrounding communities. 1

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