As I have not yet advanced in my career despite completing my Ph.D., I continue to seek opportunities for career development. For most people, including deaf and hard-of-hearing individuals, a college degree increases their employment opportunities, economic benefits, and success in the workplace. However, disabled folks are persistently underemployed, meaning that their skills are not being used in the workplace. I have worked for the same academic institution for 32 years with most of my work in secretarial support, even though I have applied for administrative positions that would better match my education credentials. My lack of advancement in the workplace can be attributed to several factors, including a lack of disability awareness, inadequate accommodations, and non-inclusive behavior. COVID-19 provided administrators with a better understanding of the types of accommodations that can improve work performance and enable professional growth for employees with hearing loss.
Let’s begin at the beginning. In 1986, after graduating from high school, I moved from Hamilton, Ohio, to live with my sister in New Jersey. However, my life experienced a turning point. Although, I was not diagnosed with hearing loss as a newborn, only a few days after living with my big sister, she noticed something was wrong with my hearing. The big sister did what any big sister would and had my hearing checked. I learned that my entire life, I have been reading lips to understand conversations due to sensorineural hearing loss.
How was my life before the hearing loss diagnosis?
Attending college has always been my dream to enable me to climb the corporate ladder to the boardroom. I struggled academically from the 4th grade until high school, so I hesitated to take college preparatory courses. I needed help to excel despite studying and completing my homework. When I took English tests, I misspelled words and needed support. During the lecture, I needed help understanding math concepts. Hence, instead of prepping for college, I pursued vocational education to acquire office skills, such as typing and stenography, which were in demand at the time. Shorthand could have been more efficient, while typing and stenography were fast. My stenography assignments and tests were always incomplete, and I earned low grades, negatively affecting my attitude toward my teacher. I understand now that the teacher was not at fault. Because I was unaware of my hearing loss, I didn’t know I needed accommodations. Despite facing academic challenges, I remained persistent, kept believing in my dream, and received my Bachelor of Science in Business Administration in 2008.
Was 1990 the right time for accommodations?
The 20th century saw some laws aimed at improving accessibility to employment for Americans with disabilities. On July 26, 1990, the Americans with Disabilities Act (ADA) became law. As a civil rights law, the ADA prohibits discrimination against people with disabilities in all areas of public life, such as jobs, schools, transportation, etc. (Americans with Disabilities Act, 1990). What does this mean for me? In the workplace, employers must provide reasonable accommodations for an employee with hearing loss to perform well on the job. But access also requires administrators to understand disability awareness. Raising awareness fosters an open communication environment and enhances the interpersonal support required to succeed in the workplace with hearing loss. Employers with solid disability awareness recognize that the first attempt at accommodation might not be the best and that you must refine and adjust to various situations. An employer can demonstrate hearing loss awareness by creating a welcoming environment, knowing an employee’s specific hearing limitations, fostering an open communication environment, and having some understanding about the situational nature of accommodations.
Several months later, I applied for a position as a law school secretary. The opportunity to enter higher education was exciting. While I was proud of my 85-wpm typing speed, I knew shorthand would be challenging. When the academic Dean interviewed me, her communication skills were excellent, and she displayed courtesy, competence, and engagement. While I didn’t know this at the time, I needed these attributes in a supervisor who could create an accessible work environment. I disclosed my hearing loss to the Dean, who assured me that it would not be an issue and that the administration would provide the necessary accommodations for me to succeed at work. It sounded great, as I believed it would work. According to the Dean, employers must provide reasonable accommodations under the ADA. What are accommodations? I assumed that if the sound were loud, I would hear it, but that’s not the case – it’s more complex than that. Although I can listen to speech sounds, I can only sometimes understand some words. (See previous TMH post by Sarah Sparks about hearing versus understanding).
I accepted the job offer. My responsibilities included working with eight faculty members, answering calls, taking messages, and handling correspondence. I sat in a noisy area, and my employer, and I, in our limited knowledge of options at the time, believed that an amplified phone was the ideal accommodation. Although the telephone amplifier made louder sounds, the speech was unclear, and the voices sounded muffled. I advocated to my supervisor about my difficulty understanding speech over the telephone, yet I continued answering the phone for fifteen years. Unfortunately, I received negative performance reviews every year. I realize now that it was not appropriate for me to answer the phone during that time. It is beneficial to have a knowledgeable accommodations office on campus to provide disability support to law school students, faculty, administrators, and staff. That office might have told my supervisor and I about alternative strategies for my work accommodation.
Latisha looks at signage bay her desk that guide folks how to effectively communicate with her. The signs explain that she uses assistive listening devices to transcribe conversations.
Knowing Your Needs
Although the employee must be able to request appropriate accommodations needed to perform well on the job, the success of disabled employees also requires administrators to understand disability awareness and to establish an open communication environment. These conditions enhance the interpersonal support required to succeed in the workplace with hearing loss. Employers with solid disability awareness recognize that the first attempt at accommodation might not be the best and that you must refine and adjust to various situations. An employer can demonstrate hearing loss awareness by 1) creating a welcoming and inclusive environment with open communication, 2) knowing the communication styles and models that work best for specific employees, and 3) having some understanding about accommodations. There are soft and hard accommodations.
Soft accommodations are:
Face the person when speaking.
Talk in a normal tone.
Ample-lit room.
Talk in quiet spaces.
Send the person an email of the time you’ll stop by their desk so they will be aware.
Share an agenda before the meeting, so the employee knows what will be discussed.
Understand that the employee may experience listening fatigue and need to take breaks during the meeting.
Know that the employee can only follow one conversation at a time.
Hard Accommodations include.
Closed captioning.
CART or live captioning.
I refused to give up on my career and persisted through driven strategies of self-accommodation, self-management, and self-advocacy.
Latisha Porter-Vaughn is a doctoral graduate from The University of Arizona. Her Ph.D. published research is “Perceptions of Deaf and Hard-of-Hearing College Students’ Work Readiness and Preparation.” She is a research associate with the National Deaf Center on Postsecondary Outcomes to continue contributing to literature that will help improve education and employment outcomes for students who are deaf or have hearing loss. And a paralegal at Seton Hall University Center for Social Justice. She is a Gallaudet University Peer Mentor for people who have hearing loss. She is also the president of the HLAA New Jersey State Association and chair of its Scholarship Committee. She is the co-founder of the HLAA Essex Chapter and a Deaf Snapshop Mentor of SPAN New Jersey. She has self-published her book “Sounds of the Heart: The Story of a HearStrong Champion Persisting Against All Odds” and is soon to self-publish her second book “How We Hear: A Useful Guide for the Hearing to Understand Hearing Loss—Answers to 10 Questions for the Workplace & Social Situations.”
The new year brings a fresh start to our lives; it’s a natural time to reflect on the year past and make plans for the coming year. In what is becoming a The Mind Hears New Year tradition (see posts from 2019, 2020, 2021 and 2022), we have updated our list of recommendations for making your workplace accessible and refined the layout of the recommendations. You can view and download the full list of recommendations for making your workplaces (in-person, hybrid and remote) accessible for your deaf and hard of hearing colleagues at this link. Below we provide an outline of the best approaches for increasing workplace accessibility and provide links to blog posts that explore particular aspects in detail.
Universally design your workplace: Our spaces become more inclusive for all when we improve access for any subgroup of our community. Consequently, by increasing the accessibility of our workplaces for our deaf and hard-of-hearing (HoH) colleagues, we create a better workplace for everyone. This includes hearing folks who have auditory processing disorder, use English as their second language, or are acquiring hearing loss during their careers. Chances are that someone in your department has hearing loss, whether they’ve disclosed this or not, and will benefit from your efforts to make your workplace more accessible (see The Mind Hears blog post about where are all the deaf and hard of hearing academics). This is why you should universally design your workplace now and not wait until someone who is struggling asks you to make modifications.
Sharing the work: With a google search you can find several resources on workplace accessibility for deaf/HoH employees, such as the Hearing Loss Association of America’s (HLAA) very usefulemployment toolkit. One drawback of these resources is that nearly all of the suggestions are framed as actions for the deaf/HoH employee. While deaf and hard of hearing academics need to be strong self-advocates and take steps to improve their accommodations, our hearing colleagues can help us tremendously by sharing the work to create accessible workplaces. Speech reading conversations, planning accommodations, and making sure that technology/accommodations work as intended is never-ending and exhausting labor that we do above and beyond our teaching, research, and service. Your understanding and your help can make a large impact. For example, if a speaker doesn’t repeat a question they were asked, ask them to repeat even if you heard the question just fine. The people who didn’t hear the question are already stressed and fatigued from working hard to listen, so why expect them to do the added work of asking speakers to repeat? (see The Mind Hears blog post on listening fatigue). Repeating the question benefits everyone. The changes you make today can also help your workplace align with equal opportunity requirements for best hiring practices (see The Mind Hears blog posts about applying for jobs when deaf/HoH here and here). The Mind Hears coordinated the listing of advice for different academic settings below to help you become better allies today.
One size doesn’t fit all: If a participant requests accommodation for a presentation or meeting, follow up with them and be prepared to iterate to a solution that works. It may be signed interpreters (there are different kinds of signing), oral interpreters, CART (Communication Access Realtime Translation), or Assistive Listening Devices(formerly called FM systems). It could be rearranging the room or modifying the way that the meeting is run. Keep in mind that what works for one deaf/HoH person may not work for another person with similar deafness. And what works for someone in one situation may not work at all for that same person in another situation, even if these seem similar to you. The best solution will probably not be the first approach that you try nor may it be the quickest or cheapest approach; it will be the one that allows your deaf and hard-of-hearing colleagues to participate fully and contribute to the discussion. Reaching the goal of achieving an academic workplace accessible to deaf/HoH academics is a journey.
Want to be a better ally and make your workplace accessible for your deaf and hard of hearing colleagues?Follow this linkto read our list of recommendations. We welcome your comments and suggestions either to this post or directly within the document at this link.
Deaf and hard of hearing scientists often face a lack of communication access, which is troubling because they have made significant contributions to STEM (Science, Technology, Engineering, and Mathematics) fields over the decades and diversify the STEM workforce. Therefore, sign language interpreters trained in science are critical to making STEM inclusive for deaf scientists. During my PhD journey in the past few years, I have slowly expanded my network of scientifically trained interpreters. Having worked with me for about three years, my scientific interpreters know my research and what I do. Having the same interpreters with me throughout my PhD is extremely important because it creates a communication barrier if the interpreter is not skilled in STEM vocabulary. Very often, science signs do not exist because STEM in American Sign Language is a specialized language, as are other signed languages. Although there are a few resources where deaf scientists meet and discuss signs for specific science words, the signs are not standardized yet and need to be developed (see Atomic Hands listing of different ASL STEM dictionaries). Furthermore, I had trouble finding scientific interpreters when starting my PhD, either because they were working with other deaf scientists already, or they weren’t available full-time. Consistency was essential for me, because interpreters will be able to pick up science-related language and signs as we go. My class and on-call interpreters should be consistent throughout the semester, so I require two interpreters full-time. In my experience, not all interpreters know science when they first start working with me, but their enthusiasm and commitment to learning the science make them good STEM interpreters.
It is one thing to translate from English into ASL, but translating from ASL into English is also challenging. People do not realize that I cannot practice my presentations alone. In order to prepare well, I have to practice with my interpreters ahead of time. Interpreters who don’t understand what is being discussed in meetings may cause major misunderstandings. For instance, some signs seem similar but have different meanings. Here are examples of such misunderstandings from my own experiences:
“Stain” and “dye” – When I said, “I stained my cells with crystal violet to perform cellular proliferation assays,” the interpreter would say, “I dyed my cells” instead of “I stained my cells.” In histology, it is important to note the difference between both words. A stain is a blend of dyes used to give contrast to different parts of the tissue used on a microscopic slide, while a dye is a reagent that colors specific molecules of tissue samples.
“Metastasize,” “spread,” and “disseminate” – When I said, “tumor cells metastasize to the lung,” the interpreter would say, “tumor cells spread to the lung,” which is the right concept, but “spread” isn’t the word I wanted to use.
I need to be very specific about which words I use. Such specificity is important in science, as it ensures that all scientists are assigning the same meaning to keywords. Having consistent interpreters assigned to us is essential so they become fluent in ASL of our discipline. Another consideration is that I need STEM interpreters voicing for me at all presentations and lab meetings, including one-on-one meetings. For these meetings, I provide some background information and a summary before each session to be extra prepared.Additionally, some science words sound similar to “everyday” terms that non-STEM interpreters might overlook. There was a time when I had a sub interpreter during a lab meeting in which mammary glands were being discussed. The interpreter said “memory” instead of “mammary.” At the time, I thought we were discussing memory cells in the immune system and could not adequately follow the lab meeting!
Since starting my PhD, I have expanded my team of scientific interpreters to reflect the demands of my job. In addition to giving presentations at conferences, presenting data during lab meetings, and participating in networking events, an important part of science is chatting with colleagues about our work. Scientific interpreters facilitate all communication between my colleagues and me. Having qualified scientific interpreters for my classes and lab work has allowed me to focus on my career, instead of constantly worrying about communication.
Even so, I still face a barrier whenever I need to travel outside the region for a conference. To attend a recent conference, I asked the agency to send my preferred scientific interpreters, who have already voiced my prior presentations and are well acquainted with my work, to accompany me. I was informed that the agency was unable to send my preferred interpreters, but they could find me interpreters in the conference area. “How can I prepare for my poster presentation and attend networking events with interpreters who know nothing about my research?” Attending scientific conferences is a critical part of my scientific training, and I need scientifically trained interpreters to have the same access as the rest of the conference attendees. I will not be able to participate in this event if I am working with interpreters who do not have experience or do not have the expertise to translate the specialized language used in our lab. As a result of my mentor’s advocacy and my own advocacy, I was finally able to bring my STEM-trained interpreters with me to the conference.
It is important for deaf scientists to be able to focus on their research rather than using up energy trying to get access. A deaf scientist’s advocacy is crucial, as is their mentor’s advocacy. Our advocacy and clarity about the accommodations deaf scientists need will help ensure their success. We cannot assume everyone knows how to accommodate us, let alone know which interpreters are the best fit for us, but by persisting in efforts to have our needs met, we can normalize the respect that our accommodation requests deserve.
Megan Majocha is a Tumor Biology PhD candidate at the National Institutes of Health/Georgetown University. Her research interests include breast cancer metastasis, cancer genomics, and epigenetics. As part of her thesis research, she investigates the role of metastasis susceptibility genes in breast cancer metastasis and the mechanisms that lead to them. Throughout her career as a deaf scientist, she has been interested in science communication to provide access to science to everyone.
Our goal for The Mind Hears is to have it serve as a global resource for deaf and HoH (hard of hearing) academics. Though countries differ markedly in the degree of resources provided to deaf/HoH individuals, our hope is that this blog can be a refuge and forum for all, regardless of where you are. To date, however, most of our blog contributors and followers have been in the US and Europe. Taking advantage of the fact that Ana is Colombian, we have reproduced our Mission Statement here in Spanish in the hopes of reaching our Spanish-speaking friends and colleagues worldwide. We welcome help with translating our mission statement to other languages.
En el año 2018, Michele Cooke y yo, ambas profesoras en la Universidad de Massachusetts, Amherst, USA, decidimos empezar un blog que reflejara nuestras experiencias como personas con sordera en un ambiente académico. Así nació “The Mind Hears [La Mente Oye]”. Dada nuestra localización geográfica, las entradas del blog han sido – hasta ahora – publicadas en inglés. Con la esperanza de que este blog llegue a ser un recurso global para personas sordas trabajando en universidades, traducimos aquí la misión del blog al español. Esperamos que esto lleve a nuestros colegas de habla hispana a contribuir entradas al blog en el futuro.
Misión
Este blog está escrito por y para académicos en cualquier etapa de su carrera con algún grado de sordera. Aquí usamos el término “sordo” para representar a todas las personas con discapacidad auditiva, independientemente del grado de sordera y del modo de comunicación preferido (ya sea oral o por lengua de señas). Los objetivos de este blog son:
Proporcionar un foro para la colaboración abierta entre académicos sordos
Compartir estrategias para prosperar con sordera en el mundo académico
Fomentar una red de académicos sordos que promuevan estrategias de comunicación inclusivas en las instituciones académicas.
¿Por qué un blog?
Como académicos sordos, continuamente hemos enfrentado obstáculos en el camino al éxito profesional en entornos diseñados para y por personas sin discapacidades auditivas. Nuestras experiencias no han sido todas iguales. Dependiendo de nuestros antecedentes/proveniencia y de las instituciones en las que nos encontramos, es probable que tengamos diferencias en acceso a recursos y en la capacidad de abogar por si mismos. Debido a que la sordera puede ser una discapacidad invisible, hemos a menudo perdido oportunidades para reconocernos y aprender estrategias efectivas los unos de los otros. A través de este blog, esperamos alcanzar a académicos sordos y con problemas de audición en todo el mundo, tanto para reducir el aislamiento, como para armar una “caja de herramientas” comunitaria de recursos e ideas. La sordera es variable y puede afectarnos de muchas y diferentes maneras, pero a través de la experiencia compartida del blog, esperamos brindar algo de valor a todos aquellos que visitan y contribuyen a nuestras discusiones.
¿Por qué académicos?
Como académicos, estamos involucrados en muchas actividades que requieren comunicación continua, a menudo con colegas y estudiantes oyentes. Dictamos clases, presentamos seminarios, participamos en comités y páneles de asesoría, moderamos sesiones de discusión y dirigimos reuniones de grupo, participamos en actividades de divulgación pública y nos comunicamos con la prensa. Muchos de los impedimentos a la comunicación que se presentan en estas actividades son exclusivos al entorno académico — y el éxito de todos los académicos, oyentes o sordos, depende de la comunicación productiva en estas situaciones. Sin embargo, los académicos sordos a menudo no encontramos soluciones adecuadas para los obstáculos a la comunicación: nuestros audiólogos no tienen suficientes clientes académicos, y las oficinas de servicios para discapacitados en las universidades están diseñadas para servir principalmente a los estudiantes de pregrado (no profesores, estudiantes de posgrado u otros académicos). Al centrarnos en la comunidad académica sorda, particularmente a niveles después del pregrado, tenemos la intención de crear un recurso personalizado que ayude a todos los académicos que se identifican como sordos a alcanzar nuestro potencial profesional.
¿Por qué “The Mind Hears [La Mente Oye]”?
El título de nuestro blog proviene de una carta escrita por el autor Víctor Hugo al educador sordo, Ferdinand Berthier. Hugo escribió:
“¿Qué importa la sordera del oído, cuando la mente oye? La única sordera, la sordera verdadera, la sordera incurable, es la de la mente.”
Estas líneas encapsulan la poderosa idea que nuestro potencial para contribuir al ámbito académico, al conocimiento y a la sociedad no está limitado por nuestra capacidad o incapacidad de escuchar sonidos. Las dificultades que surgen al trabajar en entornos académicos dominados por la audición se pueden enfrentar con creatividad y resiliencia, las cuales son características de la mente. Las herramientas que las personas sordas usan para facilitar la comunicación, incluyendo la lengua de señas, la lectura labios, el uso de audífonos, los subtítulos y los implantes cocleares, por nombrar solo algunos, ilustran el potencial ilimitado del ingenio humano. La declaración de Hugo también refleja nuestra convicción de que la colaboración con la mente abierta a nuevas ideas, a la inclusión y a aquellos que abordan las cosas de manera diferente a la nuestra, puede beneficiarnos a todos. Ya sea que nos hayamos criado usando lengua de señas en la comunidad Sorda, o que recientemente hayamos perdido la audición, todos los que trabajamos en el mundo académico hemos desarrollado formas de ser exitosos. A veces podemos ver beneficios en nuestra sordera (por ejemplo, Deaf Gain), y otras veces nuestra sordera puede ser una carga no deseada (por ejemplo, Conquering faculty meetings (or not…)). Este blog es un hogar para todas estas perspectivas y experiencias. Esperamos que hallen en este blog un lugar de encuentro gratificante de mentes verdaderamente empoderadas, ingeniosas y abiertas.
At this moment, after 2 years of pandemic living, many COVID restrictions are being rolled back in the communities where we – Michele and Ana – are located. We see similar steps being taken across the U.S. and in other parts of the world. Whether these rollbacks represent a return to normality, or just a lull before the next variant strikes, only time will tell. The current result, for us, is a patchwork of requirements – our local grocery store no longer has a mask mandate, but at the time of writing, the classes we are teaching still require that everybody be masked.
This inflection point in our local pandemic experience provides a time to pause and reflect how the widespread adoption of masks has shaped our lives as deaf/heard of hearing (HoH) academics in the last two years. It is possible to simultaneously hold two opinions of masks. We are grateful that a low-tech solution like mask-wearing has allowed us to be out and about in public and to teach our classes while keeping ourselves and others safe these past years; we are grateful to be in communities where mask mandates were embraced as part of a collective action we could undertake for public health. At the same time, we have despaired about the barriers that masks have imposed on our ability to communicate and connect with others (see Ana’s post on Navigating a Masked World), and the consequential isolation; we have mourned the limits on our engagement with our students when every verbal interaction is such a struggle for comprehension. We also have tried alternatives, such as clear masks, and have found them to not be a solution– they fog up, become uncomfortable and do not protect as well as other masks. Communication is still a struggle with clear masks in the classroom and elsewhere.
In today’s post, we want to highlight the art of Ryan Seslow that so accurately captures the effect masks have had on our lives as deaf/HoH people. In his series of “The Eight Faces” (pictured above) we see our struggles portrayed much more effectively than we can do so in writing. In Ryan’s own words (<280 words each due to limits of twitter postings):
“Important fact about this series – I’m Deaf & this series is an expression of how hard it has been to receive communication from a world of people wearing masks for the last 1.8 years. Of course the masks are necessary to protect us.”
“A masked face takes away all access to read facial expressions, the lips & the mouth to speech read & connect to rapport. The portraits are what distorted audio garble looks like as a visual example of strained hearing attempts over and over again.”
We also direct our readers to Ryan’s digital art series: Waking Accessibility Awareness, which so vividly capture his (and ours!) continuous challenge for access as a hard of hearing artist in the academic and art worlds.
The new year brings a fresh start to our lives; it’s a natural time to reflect on the year past and make plans for the coming year. In what is becoming a The Mind Hears New Year tradition (see posts from 2019, 2020, and 2021), we have updated our list of recommendations for making your workplace accessible. You can view and download the full list of recommendations for making your in-person and remote workplaces accessible for your deaf and hard of hearing colleagues at this link. Below we provide an outline of the best approaches for increasing workplace accessibility and provide links to blog posts that explore particular aspects in detail.
Universally design your workplace: Our spaces become more inclusive for all when we improve access for any subgroup of our community. Consequently, by increasing the accessibility of our workplaces for our deaf and hard of hearing colleagues, we create a better workplace for everyone (see post on the impact of the Mind Hears). This includes hearing folks who have auditory processing disorder, use English as their second language, or are acquiring hearing loss during their careers. Chances are that someone in your department has hearing loss, whether they’ve disclosed this or not, and will benefit from your efforts to make your workplace more accessible (see post on Where are the deaf/HoH academics). This is why you should universally design your workplace now and not wait until someone who is struggling asks you to make modifications.
Sharing the work: With a google search you can find several resources on workplace accessibility for deaf/HoH employees, such as the Hearing Loss Association of America’s (HLAA) very useful employment toolkit. One drawback of these resources is that nearly all of the suggestions are framed as actions for the deaf/HoH employee. While deaf and hard of hearing academics need to be strong self-advocates and take steps to improve their accommodations, our hearing colleagues can help us tremendously by sharing the work and not expecting us to bear all of the burden of creating accessible workplaces. Speech reading conversations, planning accommodations and making sure that technology/accommodations function is never-ending and exhausting work that we do above and beyond our teaching, research, and service (see post on making an impact at high stakes conferences, post on conquering faculty meetings, and post on teaching very large classes). Your understanding and your help changing our workplaces can make a huge difference to us. For example, if a speaker doesn’t repeat a question, ask them to repeat, even if you heard the question just fine. The people who didn’t hear the question are already stressed and fatigued from working hard to listen, so why expect them to do the added work of ensuring speakers repeat questions (see post on listening fatigue and post on the mental gymnastics of hearing device use)? Repeating the question benefits everyone. The changes you make today can also help your workplace align with equal opportunity requirements for best hiring practices (see The Mind Hears blog posts about applying for jobs when deaf/HoH hereand here).
One size doesn’t fit all: If a participant requests accommodation for a presentation or meeting, follow up with them and be prepared to iterate to a solution that works. It may be signed interpreters (see post on working with sign interpreters and post on networking with deaf colleagues who use interpreters), oral interpreters, CART (see post on Captions and Craptions), or FM systems (see post on Using FM systems at conferences). It could be rearranging the room or modifying the way that the meeting is run. Keep in mind that what works for one deaf/HoH person may not work for another person with similar deafness. What works for someone in one situation may not work at all for that same person in another situation, even if the situations seem similar to you. The best solution will probably not be the first approach that you try nor may it be the quickest or cheapest approach; it will be the one that allows your deaf and hard-of-hearing colleagues to participate fully and contribute to the discussion.
Want to be a better ally and make your workplace accessible for your deaf and hard of hearing colleagues?Follow this linkto read our list of recommendations. We welcome your comments and suggestions either to this post or directly within the document at this link.
The last year required a myriad of adjustments in our professional lives. For those of us in academia, much of it entailed moving our teaching and service to remote format. The pandemic isn’t over, but many universities around the world have taken steps to return to face-to-face operations. When the current semester started, we, Ana and Michele, shared notes on what aspects of remote teaching and remote working went well for us, and which we hoped to keep no matter what mode our future work takes (e..g in-person, hybrid mode, or remote; masked or unmasked). Because we experienced many of the same struggles and benefits, we haven’t attributed our experiences and discoveries to a particular person.
Teaching
Switching to remote work mode in 2020 and 2021 forced us to shake up our teaching, making us re-examine our class content and many of our class practices (see our post on accommodating a pandemic). This push towards innovation left us with several practices that we wanted to bring back with us from the pandemic — some because they are helpful with our deafness, but others simply because they seem to improve the pedagogy of our courses.
Zoom office hours can be more accessible and more inclusive than in-person office hours. Though in-person conversation always provides greater connection, students appreciate being able to drop in with a question from wherever they are, instead of making the trek across campus to our offices. This ease of access meant they are more liable to come even if all they have is a small question. Also, if we are zooming from private spaces we don’t have to wear masks, which allows speech reading (see our post on navigating masked world) – with this and auto-captions enabled we are able to follow conversations often better than we could in person.
Going online forced us to explore and use the tools available in our class management software, which we had resisted exploring fully before, primarily due to inertia. We found that we could offer better feedback and grade more equitably assignments submitted online. For example, messy handwriting is less of an issue with online assignments. We could also come up with more creative ways for students to engage with the class content and work together (e.g. challenges that involved students taking pictures of themselves with class-related content; collaborative jamboard tasks). Previously, we had over-relied on the standard think-pair-share and we found that jamboards opened new ways of having students work together. We could even set up a break-out room for folks who prefer to work on their own, rather than having them feel obligated to work with their chatty neighbor. For seminar style courses, one of us started using Perusall for reading assignments where students post questions and can comment on the questions of others. Having those discussions beforehand meant that students came to the seminar ready to engage with the material more deeply. We have continued to make use of several of the class management tools we discovered while in-person this semester.
Inertia had also prevented us from previously trying a flipped classroom approach. But in order to provide both synchronous and asynchronous learning opportunities for students while fully remote, we were essentially “forced” to flip our classroom for the first time. We discovered that we really liked it! Students seemed much more engaged/aware when they came to class having previously watched one of our videos on the topic being covered that day. We had assigned readings in the past, but it seemed like most students never read the assignments. The combination of pre-recorded videos with a required follow-up quiz led to much better questions in class and also less of a rush to try to fit a given topic within a class period, and we have continued using a flipped approach for our in-person classes this semester.
Because engaging remote students to participate was more challenging than being in-person, we started using anonymous polling. Anonymous polling tools, such as the Zoom poll, Mentimeter and Poll Everywhere, provide a powerful way to engage students. During remote teaching, we found that these anonymous polls allowed students who might have otherwise been uncomfortable to raise their hand to express their opinions. We have now tried to use some of these tools for all courses, whether in-person, hybrid or remote.
Several platforms allow written questions during live lectures. You provide a URL to the audience and they can then access a Q&A forum from their smartphones or laptops. For deaf/HoH instructors, this provides a way to understand student questions in large courses. Even before indoor mask requirements, we would struggle to understand questions or comments from folks beyond the first row (see our post about teaching large classes). One of us has experimented with receiving questions this way using Google Audience Tools in her large (~230 students) in-person lecture class this semester; in fact, this has been the strategy that has made it possible for her to interact with masked students at all . Allowing anonymous questions to be submitted has yielded more student questions, while reducing communication barriers for us as deaf/HoH instructors. It would be great to see more live presentations take advantage of this functionality and discover ways to incorporate audience/student responses to each other too.
Meetings
All of the benefits and drawbacks of remote teaching also apply for remote meetings. It can be difficult for deaf/HoH folks to follow in-person meeting discussions, and when we are leading meetings we often miss what folks contribute, which can erode the flow of meeting discussions, as it does the classroom discussions.
Faculty meetings
Faculty meetings are notoriously deaf/HoH unfriendly (see our post about faculty meetings) and during the period of remote work, we were able to participate more fully. The ability to see colleagues’ faces while talking and combination of auto-captions and generated transcript (once our institution actually purchased the zoom auto-captions option) did make it easier to follow the entirety of zoom meetings. We have fortunately continued to have remote faculty meetings this semester. One of us has had one masked in-person faculty event; at this in-person event she felt herself drift into the background, as in pre-pandemic times when speaking would reveal we had missed part of the conversation.
We have mixed feelings about advocating to never have in-person faculty meetings again. The chit-chat before and after meetings improves department cohesion. The shared laughter or groans in response to lighter moments or bad news helps camaraderie. At the same time, we recall so many times when we heard folks laugh and wondered what joke we had missed. We feel that we participate more equitably in zoom meetings than for in-person faculty meetings. Going forward, in-person meetings could be alternated with remote meetings in order to harness the benefits of both meeting modes.
Committee meetings
Pre-pandemic, committee meetings often involved scrambling to get across campus in time for the start of the meeting. Being able to participate from our offices or homes remotely, meant not only that the meeting was easier to follow (see comments above), but we also avoided missing the first few minutes in the hustle across campus. We’ve also been participating in a greater number of professional committees with folks at other universities and even from other countries. In the before-times, such committees might have met in person during one or more of the disciplinary conferences. Now that we can meet more regularly over zoom, we find this committee work to be more effective and rewarding. Maybe this is also because we can participate more fully in the remote mode than we could in person, where we were already exhausted from listening at the disciplinary conference. We have even found that the auto-captions can help us to some degree in understanding people with unfamiliar accents (see our post about unfamiliar accents).
Research collaboration meetings
Being able to share screen and annotate on the screen allows for some research discussions to follow more smoothly than in-person. Sometimes, when a group is huddled around one computer, they can’t see the screen and they end up pointing vaguely to try and describe something. The annotate tool makes it clear what folks are pointing to and still allows everyone to add to the conversation. However, one drawback of remote research meetings is that drawing with a computer mouse is horrible clunky compared to a pen on paper or whiteboard. Another benefit of remote research meetings is that our research collaborations with folks at other institutions has strengthened, as we have regular remote meetings to discuss on-going and potential projects. With captions available for remote meetings and video for speech reading, we are able to participate fully in ways that teleconference research calls did not allow pre-pandemic. The same is also true for journal club type seminars that discuss a research paper.
Invited Speaker Seminars
With the return to face to face instruction some of our seminar presentations from visiting scholars have been in-person and some hybrid or remote format. We have found that remote seminars continue to be of overall benefit, allowing us to invite distant speakers, leading to greater geographic representation. In-person seminars with and without masks have always been challenging for deaf/HoH folks. Allowing for hybrid seminars with auto-captions increases accessibility for deaf/HoH academics, but seminar hosts and/or speakers have to be cognizant about repeating audience questions to make these available to those online. What about when we have been invited to give seminars elsewhere? Given the current reality of masking indoors and the challenges this poses for our ability to speech-read our hosts and audiences, to date we have only accepted remote speaking invitations.
Academics, by nature, tend to resist changing the way we work. Our research and scholarship builds on the previous work within our disciplines. We don’t reinvent our disciplines with each new study. Experiments only change one parameter at a time in order to learn how systems work. Unless there are external factors, our tendency is to work the way that we have in the past. Data can point to better practices that slowly shift how we work over time and with slow incremental changes. While our survivorship bias leads us to make only small changes to what has worked in the past, what worked in the past for meetings and teaching was not inclusive to everyone. The covid-19 pandemic forced an overhaul of how we work. Within weeks, we adopted new approaches that otherwise might have taken us years to try. The pandemic crisis also provides a phenomenal opportunity to assess the way that we work and make wholesale changes that improve inclusion and access.
Rather than returning to the old normal, we advocate for moving forward to the new normal. This new inclusive normal uses effective practises from in person and remote teaching and meetings. We would love to hear from others on “best practices” that they have brought back with them from their pandemic experiences.
I can pass as hearing. With good lighting, low background noise, and a good night’s sleep I can follow and participate in small group conversations like any hearing person. Like nearly all deaf/hard of hearing (HoH), my ability to listen, speechread, and follow conversations decreases quickly with less light, accrued listening fatigue of the day (see post on How much listening is too much?), more background noise, additional people with quick back-and-forth banter, or unfamiliar accents (see post on Understanding unfamiliar accents). I’m also pretty good at bluffing.
<garbled speech>… nod and smile<garbled speech>Ho! The group is laughing now. Laugh a little — but not too much
<garbled speech>nod and smile …
I don’t sound as deaf as I am because of years of speech therapy to teach me how to pronounce sounds that I can’t hear. The message speech therapy delivers is that the deaf/HoH folks should work hard to sound as hearing as possible. The burden is on the disabled person to assimilate rather than for hearing folks to tolerate deaf accents (see post on Eloquence is Overrated). Until I met other deaf/HoH folks in graduate school, I bought into that myth. I worried a lot about how I spoke, and my own internalized ableism fueled the myth that if I just worked hard enough nobody would know about my deafness. I could overcome my disability. My view on speech has changed over the years and I now find deaf accents wonderful/familiar/comforting. Though I will admit to still having some worries about my speech when I give high-stakes presentations —that internalized ableism is a tough beast to tame.
So, the combination of my slight deaf accent, excellent bluffing skills, and the privilege of being able to follow well-lit conversations with low background noise may be why people sometimes seem to either doubt my declarations of my deafness or underestimate my degree of hearing loss. Most of the time I don’t really care how my hearing is judged, but every now and then folks decide to call me out for what they perceive as inconsistency between my acting like a hearing person and my statement of my deafness — they will say “You don’t sound deaf”, or they will even try to test my hearing. Their nosy and inappropriate questions remind me of a hearing test that I failed the summer before my senior year of college.
I was hired by a mining company to participate in secondary gold exploration in northeastern Nevada. We lived and worked in a camp several hours from the nearest town. My field partner and I were hired to collect and log the rock cuttings (broken bits of rock produced by drilling) from various prospects within the claim. If we saw some promising cuttings, we sent them off to be assayed for their gold content. The mining company was hoping to find some high-grade Carlin-type disseminated gold that would make it worth setting up a mine in this remote high desert locale. Spoiler alert: We never did find good enough gold at that location. But the company paid us well for that summer of exploratory work. This job meant that my field partner and I got to hike around in the rattlesnake infested high desert every day to retrieve cuttings from the drill sites. The drillers would move the rig every week or so to a new site that we had previously marked for sampling. I mentioned to my co-workers that I couldn’t hear rattlesnakes and ask them to warn me if they heard a rattle when we were moving though the brush. I also took care to stomp the ground when I ventured someplace craggy where rattlesnakes might lurk. While I knew that rattlesnake bites were treatable, I didn’t relish the idea of an emergency 2+ hour drive to the nearest medical facility.
After one long day, I was in camp and standing around chatting with my co-workers (my field partner and the camp cook) and suddenly their eyes opened wide and their mouths formed startled “O”s. They were stunned and clearly were no longer listening to whatever fascinating and captivating story I was talking about at the time.
“Look behind you!”
I turned around and 5 inches from my face was a writhing burlap bag. The bag was moving in all sorts of directions consistent with a bagged and very angry snake.
Yikes!
The drillers had decided to test my hearing loss and caught a rattlesnake in the bag. They wanted to see if I really wasn’t able to hear the snake. While I was babbling away, they snuck up behind me and held the bag inches from my head waiting for my reaction.
I learned a couple things from this. #1 Never trust drillers. #2 This experience also taught me that my lived experiences aren’t appreciated by most hearing people and some of them won’t trust my own assessment of what I can and can’t do. Sometimes they will test me to see if I’m ‘for real’. “Can you hear me if I cover my mouth?” Sometimes they will doubt my abilities. “You can’t accept this job because it involves visiting construction sites with heavy equipment that you won’t hear.” Sometimes, they will presume what accommodations I need without asking me. “Zoom has auto-captions, so I figured you were all set.” It is no wonder then that sometimes it is easier for deaf/HoH not to disclose their deafness and thereby avoid dealing with inappropriate responses. If we just work hard enough, we can pass for hearing and no one will know or ask anything.
But not disclosing my deafness isn’t safe for me. Not disclosing and working hard to pass as hearing is harmful to me in that I’m doing a lot of work just to stay in place and that impedes my ability to thrive. Just like I benefit from my field partner calling out to me when they hear a rattle, accommodations in my academic career allow me to participate more fully and avoid both harmful misunderstandings and grueling listening fatigue. This rattlesnake-in-a-bag experience prepared me for an academic career where my colleagues, fellow data loving scientists, want to see direct evidence of my invisible disability.
So, when I’m asked inappropriate questions about my deafness, I picture in my mind that writhing burlap bag. I’ve got this — after all, you are the one holding a bag with a pissed off rattlesnake.
The Mind Hears was excited to learn that Anne and Breanne are two deaf graduate students in the same School of Integrative Plant Sciences. So many of us navigate graduate school as the only deaf student in the university, much less the graduate program. So we caught up with Anne and Breanne to explore how having a compatriot in graduate school has impacted their experiences. We asked them these questions:
Breanne: I am a PhD candidate in Plant Pathology at Cornell University, and am researching the population genetics of a fungus that causes powdery mildew of grapevine. I have loved science since I was a little girl, and was inspired to pursue sciences due to all of the different rare diseases that have occurred in my family. I’ve always been fascinated by infectious diseases and molecular biology, and the idea of translating that to plant diseases and protecting our crops was very exciting to me for graduate school. I identify as DeafBlind, and was born in New York State with moderate to severe hearing loss; I lost my vision as a teenager due to the recessive genetic disorder known as Usher Syndrome. I began using ASL to communicate during my undergraduate years at RIT/NTID, but have since lost those skills. It has been hard being apart from a deaf community for so long.
Anne: I am a PhD candidate in Horticulture at Cornell carrying out research in viticulture, by evaluating impacts of canopy management practices on above and below-ground parameters in grapevines. I’ve always been very passionate about fruit crop production and hope to go into extension, to teach students in the vineyard or orchard about management practices, to develop my own teaching videos on all things fruit crop and wine related in ASL, and one day, possibly to own a farm winery. I was born profoundly deaf in Connecticut and grew up with SimCom (Simultaneous Communication), initially learning SEE (Signed Exact English), then later, ASL, when I improved my fluency during my postgraduate years in Colorado.
Tell us about your discovery that you were not the only deaf student when you started your graduate program.
Breanne: Day 1 during the School of Integrative Plant Sciences (SIPS) graduate school orientation I was wondering, “why does the interpreter keep looking at someone else?” If only you could hear my thoughts that day; I was so shocked (and thrilled!) when I pieced it together! Looking back, I have no idea who was presenting or what they were talking about. I was ecstatic to meet Anne that day, a fellow deaf woman and someone whose smile melted away the stress of that orientation day on this brand new campus.
Anne: It really made my day when I learned of Breanne — I got goosebumps when I learned that I wasn’t the only deaf person and just had to meet her. I am so proud of Breanne for pressing on, reading thousands of papers, looking at microscopes, advocating for herself to get her guide dog, advocating for others, and continuing to succeed in her program. And I love being able to just communicate with her in sign and not have to worry as much about my speech! She is probably one of the first Deaf, and first DeafBlind in academia at Cornell’s AgriTech campus in Geneva and is making a huge impact there. Meanwhile, I have been staying in Ithaca, where my research is, and have been working as a Graduate Community Advisor for the graduate, post-doc, and visiting scholar housing community on Cornell’s Ithaca campus. I have also been educating the residents in the graduate community, which is predominantly international students, about people with disabilities. These residents, whom I love so much (they spark so much joy), either have a lack of or a rudimentary understanding of people with disabilities, as their native countries either suppress or hide their disabled citizens. They have been incredibly open and have shared with me that their experiences as foreigners are in some ways similar: having to navigate American sociocultural norms and encountering miscommunication and misconceptions. Many of them have made a lot of effort to communicate with me when we had trouble understanding each other! It’s encouraging to see that. In this context, Breanne and I have shared our thoughts, feelings, and strategies for working with people who have not had exposure to the deaf and disability communities.
Tell us of other ways that having deaf fellow students on campus have impacted you.
Breanne: In our second year, Anne introduced me to a new third Deaf person on campus — a new law student who already had a PhD, Dr. Caroline Block! We had a group facebook message going and we shared our experiences with the handful of ASL interpreters being assigned to us. We found out that whenever one of us requested a different interpreter, Cornell Student Disability Services would trade our interpreters mid-semester. When personal style is the issue, it’s okay to retain the interpreter for another student, but that wasn’t the case here. These interpreters sometimes didn’t have the experience necessary to interpret doctoral level courses, would check their phones mid-lectures, and would not wear black clothing despite knowing I’m blind. Thankfully, the three of us decided to meet with Student Disability Services and demanded that all ASL interpreters adhere to professional policy, and that one interpreter in particular never be hired for any other Cornell student again. Also, please let me note that we’ve also had some amazing interpreters, ones that are proficient and root for us every step of the way in our PhDs.
I remember early on in my studies being so stressed from the commuting to and from the Geneva campus, the culture shock of attending this big Ivy League university, and having to try and remember if I had requested access services (and if so, which ones?) for this event or that lecture. However, the absolute hardest part was falling victim to ‘the hidden curriculum,’ the unwritten norms and unspoken expectations that many underrepresented minority (URM) doctoral students are not aware of. My mother was the first in our family to go to college and got her Bachelor’s degree when I was growing up, and then I was the first in my family to pursue a PhD. It seemed like every graduate student in my department had at least one parent who had a PhD. I did not have many close friends in my program, and I felt so alone. Honestly, I had just kind of accepted this fate, that “okay, this is Cornell, they don’t have Deaf students or a deaf community in Ithaca”, that I truly did not think I should try to change things. I eventually realized it wasn’t just me. Cornell was not set up to support us and we needed to work exponentially harder than our peers just to survive. Without having Anne and Caroline to talk to for mutual support, I would have continued to think that my failure to thrive was my own fault.
On days where I did not feel like continuing on in the PhD program, I would still get out of bed and try because I knew that I represented so many Blind and disabled people out there who are told to pursue a career that “suits their blindness.” This is something my own family and friends told me too. As a disabled person who’s made it this far, I feel it is my duty to pave the way and make it easier for those who come after me. Anne and I are both trailblazers. I didn’t really know what was expected of me in terms of my doctoral research, but it was obvious that this place wasn’t inclusive to people like us so I buried myself in advocacy. I was committed to making Cornell a better and more equitable and inclusive place to go to graduate school. I was elected to and served on the Presidential Task Force that was formed in response to horrible incidents of racial bias in Ithaca, I served as the Graduate and Professional Student Assembly (GPSA) Student Advocacy Committee Chair, I wrote the mental health & well-being section of the Graduate and Professional Community Initiative (the GPSA’s 5 year strategic plan, administration use it to inform the decisions they make for our community), I worked closely with other student leaders, administration, deans, and people in Cornell Health and was very successful.
However, I can honestly say that I’m not sure if I would have made it this far in the program if Anne weren’t here, starting a PhD in the plant sciences at the same exact time. Anne is the only other scientist I have ever been able to use ASL with at a Cornell event, and someone who was dealing with so many of the same struggles as me. Having her to validate my experiences is what kept me strong enough to self-advocate in the face of trial after trial. We both eventually passed our A exams (doctoral candidacy exams), and we both felt embarrassed about when we did it — as if there was an unspoken timeline that we did not achieve compared to our hearing peers. However, I firmly believe that what matters most is crossing the finish line and not how fast you got there. I know that we will both cheer each other on during our dissertation defenses and both be successful in passing those too. I cannot stress enough how knowledgeable and skilled Anne is as a viticulturist and scientific researcher. This plant sciences are blessed to have a woman like her pursuing her PhD in a lab and university that has global recognition, and any institution would be lucky to have the chance to hire someone who is both so scholarly yet so pleasant to work with.
Anne: Yes, I echo Breanne’s statements about our experiences. We had challenges with the interpreters initially. I have had several interpreters who are lovely people, but I had to ask them to be more professional (wearing black, etc). One of them kept violating professionalism and had been passed around among the deaf students, so, with the power of three outstanding deaf scholars, myself, Breanne, and Dr. Block, who now has a PhD and a JD, we collectively met with the Student Disability Services to ask that the interpreter be removed. Since then, the interpreting agency, when faced with an interpreter shortage, kept bringing them up, asking if we were okay with scheduling them if nobody was available. We all would decline and change our meetings to avoid that situation. We are grateful that Cornell Student Disability Services has changed a lot since then, with the hiring of a wonderful disability accommodation access specialist who made an effort to learn ASL and all about Deaf culture! This specialist has gone above and beyond, so that is a change we are very pleased about – they have been very easy for me to work with. Plus they have honored my request to work with specific interpreters and not once did they assign me to someone who is not a good fit for me. I was able to focus a lot more on my studies, since this communication specialist has been hired. My student disability counselor, who has a disability, is also fantastic, and together with the accommodation specialist and the new director, created the change we needed.
Also, Breanne has done outstanding work with the GPSA and Presidential Task Force, and the American Phytopathological Society (APS) conference committee, bringing a lot of much needed change. And this is something we’ve also noticed: there is the hidden curriculum, sociocultural norms, and much more that many miss, not only in the deaf/HoH+ community, but also those in the disabled, first gen, and other minority communities. We hope to see Cornell doing something about it, developing a workshop or two to address the hidden curriculum, so we have been bringing specific aspects to light through our social platforms. I have been blessed with people including my family and my advisor who brought the bulk of the hidden curriculum to light, but many others are not as lucky. So the pipeline in retaining STEM scholars is leaky as people drop out or change their career paths. Again, Breanne and I have conversed a lot through various mediums, brainstorming approaches to educate people while supporting each other. She and I have also been overcoming challenges in our respective PhD programs and cheered each other on when we reach milestones. I received a conditional pass on my A exam and did not become a PhD candidate until my fourth year, which I was very embarrassed about, compared to others in similar fields, yet Breanne really cheered me on. When she shares her accomplishments with me, I have so much pride and joy for her!
What other challenges have you found remain for you in grad school, despite having the support of deaf colleagues?
Breanne: Cornell in general – it is not a welcoming or inclusive place for people like us, or us specifically. We’ve had faculty that are supposed to support, advise, and mentor us practically turn their backs on us at certain points in our programs. Even our professional support system is fragile. Luckily our support has grown, our access services are far better, and we now have an ASL professor on campus, Brenda Schertz. I am very hopeful that ASL and the deaf community will grow here. With this, I hope every student can find the mutual support Anne and I found in each other.
Additionally, I have since received my first guide dog which has significantly improved my personal and professional life. People in my department seemed confused as to why I needed one, I barely even used my white cane. However, they didn’t see me fall off the steps of the stairs inside the plant science building during my graduate school interview, my heart rate spike every time I stood at the top of the stairs when all the light bulbs were out, or all the bruises I had from travelling to/from work and running errands. I was so fortunate to have advisors that sought education directly from me on life as a scientist with a guide dog and supported me. In the United States, service dogs are allowed in all public facing businesses, even in hospitals, but individual institutions and professors often bar students and employees with service dogs from working in the laboratory. The only time a service dog should ever be barred from a scientific lab is if it would hurt the integrity of the research itself (i.e. an experiment on bird behavior when birds see dogs as predators) or if the research could seriously harm the service animal despite them wearing similar PPE to humans and staying out the way as service dogs are trained to do.I am deeply grateful for Cornell Student Disability Services and both of my advisors’ full support in this area, but the stress was certainly still there. I could so easily be denied access to my lab space like so many of my blind and disabled colleagues. I will not stop advocating for changes in this space because I have always firmly believed that science is for everyone. How can we recruit and retain diverse scientists if you reject a freshman from taking your introductory chemistry lab course because they have a service dog to mitigate their disability? Anne and I frequently speak out about our frustrations that despite endless conversations about ‘diversity,’ nobody seems to value disability as part of the beautiful spectrum of diverse and underrepresented people we need to support in STEM, and we are trying to change that.
When participating in a panel discussion in the DEAF ROC conference in Rochester, NY in 2019 called, “Successfully Advocating & Maintaining Relationships with Access Services,” I learned about PhD students having uniquely assigned ASL interpreters who they were able to develop a close working relationship with. This situation allows interpreters to learn the subject matter as the students develop their expertise throughout the years, and allows for more seamless communication with advisors and labmates. It also removes the burden from Deaf students of trying to remember whether or not they have requested interpreters for an event yet, since interpreters essentially maintain their same meeting schedule. Bringing disabled people together to share experiences is crucial, because this arrangement is something I never would have dreamed of asking for, yet would clearly benefit most Deaf PhD students. I firmly believe that this should become the norm for graduate school education, where 4-6 years are spent working tirelessly to become an expert and create new knowledge in a highly specialized field. In addition, I also look forward to continuing to work with Anne and other disabled colleagues, and pursuing a career that allows me to make drastic changes to make STEM more accessible, equitable, and inclusive for people of all historically underrepresented and marginalized backgrounds.
Anne: While we are very grateful for this opportunity to pursue a PhD at one of the world’s most renowned universities, Cornell generally needs a lot of advocacy to be kept accountable in adhering to its “any person, any study” motto. There is a lot administrators don’t know that we d/Deaf, DeafBlind, HoH, and other members of the disabled community continue to try to educate them about. There are things that we need in order to succeed, and we find ourselves advocating a lot for our needs to be met, and for policies to be put in place for future students so they can focus on their studies more. Unfortunately, there are still some people who question our abilities to do something simply based on our disability or hearing status. I have been lucky to be surrounded by excellent people in the viticulture and enology industry who are working to make the field more accessible. Breanne and I constantly have to remind people to look at the person, their passion and perseverance, as well as what they bring to the table, and not accept stereotypes held by the world. There are a couple of valuable resources already available including a wonderful paper done by our colleagues in Ecology and Evolutionary Biology (EEB) discussing strategies for at-risk scientists, and while they are helpful, there is still a gap when it comes to the deaf/HOH+ communities. I look forward to seeing a time when these gaps are all filled!
Due to recent racism and bias incidents, people at Cornell are beginning to open their minds to issues that disabled scholars too have been facing. Since we started in 2016, we have been advocating for captioning or transcriptions for podcasts and videos, contacting many clubs and departments, especially Cornell’s own Diversity and Inclusion office. Now Cornell does that by default much more often than they used to. There is still work to do but I am pleased with the progress we have made so far. I have been working with Cornell Dining to encourage them to develop alternative ways to order food, such as providing a paper and pen. While they listened to me, they decided to develop an app, “Get Set”, which allows students and faculty/staff to order ahead of time. It is a wonderful idea, however, there are people who don’t use smartphones and paper and pen are still not available. So that is a work in progress.
Breanne and I plan to co-author a paper to share our experiences of working with deaf/HOH + scientists, especially those with intersecting identities, to provide a framework for future mentors and scholars One thing we will highlight is the need for a designated interpreter who is to be assigned to that student only, going with that student everywhere, as needed, and to be on call for last minute meetings, like statistical consulting drop ins. We would love to see more Black and other minority deaf entering Cornell and we will advocate for the assigning of interpreters who are culturally similar e.g. Black interpreters, upon request. It is very encouraging to see the changes that are occurring.
This is part 2 of an autobiographic pair of posts by Stephen Klusza about his decision to get cochlear implants in graduate school. You can read about his life up to his decision in part 1. This multimedia post includes a video at the bottom of the page with images and excerpts of songs that express Stephen’s journey.
–Stephen
Hello darkness, my old friend,
I've come to talk with you again,
Because a vision softly creeping,
Left its seeds while I was sleeping,
And the vision that was planted in my brain
Still remains
Within the sound of silence….
- Simon and Garfunkel “The Sound of Silence”
Within the past decade, I have occasionally remarked that if I were born 50 years earlier, I would have been out of luck. After losing the rest of my hearing, I felt that I was past the point of no return. In an effort to leave no stone unturned, I went to see a specialist at the Mayo Clinic in Gainesville, who ordered an MRI to determine the cause of the loss. Although the radiologist report came back with no findings, my specialist looked through it more thoroughly and found that my vestibular aqueducts were malformed in my inner ear on both sides. They were partially functional but prone to collapse at any time. Then, he said that I would be a good candidate for cochlear implantation. Even in the late 2000s, I had never heard of cochlear implants (CIs), despite my many previous visits to many audiologists and ENT doctors. I was stunned to learn that something could bring my hearing back. It all seemed too good to be true – and it was.
The doctor presented many caveats and uncertainties about the procedure. The process is irreversible, in that you lose any residual natural hearing upon surgical implantation. The surgery has a small risk of facial paralysis because of the proximity of facial nerves to where they drill to access the implantation site. The other factor weighing on my mind was the increased visibility of the processors compared to hearing aids. I had always worn behind-the-ear hearing aids that were visible with my short hair, but I still wished I could completely blend in the crowd and be left alone from all the stares and whispers that I had experienced all my life. Wearing hearing aids or cochlear processors was never a source of shame for me. I was simply tired of being a spectacle. I was tired of working much harder than hearing people just to be worthy of the furthest seat at the table. I was tired of persevering against all odds for a world that treated me as lesser than my hearing colleagues.
My pain is self-chosen
At least, so the prophet says
I could either burn
Or cut off my pride and buy some time
A head full of lies is the weight, tied to my waist
The river of deceit pulls down, oh oh
The only direction we flow is down
Down, oh down….
-Mad Season "River of Deceit"
I did not have a magical moment of rational clarity that led to my decision to get implanted. In my vulnerable state of self-preservation, I simply clung to the tiny slivers of hope that things might somehow get better with the implant. My first surgery (left ear) was scheduled during Christmas break to allow for recovery from the invasive surgery. My parents visited for a couple of days to help me get through the worst of the post-operative trauma from the outpatient surgery. I had a reaction to the anesthesia and severe dehydration led to nausea, vomiting, vertigo, and migraines from the tightness of the head bandage. My only respite from the pain was formless sleep.
Every Christmas, I would go with my parents to visit my grandmother, but I was unable to do so this time. She completely understood but it broke my heart that because of my surgery, she would not be able to see me or my parents that year. My parents spent a lot of time and resources to help me recuperate. I was more distant in my interactions with everyone, including my dog Honey. Given that we went on many daily walks and enjoyed play time whenever I was home, I can only imagine the puzzlement she felt when my demeanor changed, when I largely stopped doing those things with her. It is something I regret to this day because I lived by myself and she was alone whenever I wasn’t home, and there was no way that she could understand what was going on. In retrospect, I sometimes wonder if guilt was the deciding factor for me to get implants. There was a chance that implants could bring back some semblance of the life that I used to have with my family and the few friends that I had. I was even willing to put myself through more pain and uncertainty just for the chance to hear Honey’s grumbles and barking when she didn’t get her way (since I spoiled her rotten).
A long December and there's reason to believe
Maybe this year will be better than the last
I can't remember the last thing that you said as you were leaving
Oh the days go by so fast
And it's one more day up in the Canyons
And it's one more night in Hollywood
If you think that I could be forgiven
I wish you would
- Counting Crows “A Long December”
My first activation was mostly typical of other adults who have had cochlear implants – voices sounded like robotic chipmunks and high frequencies were like icepicks to my ears. Music sounded like washes and drones of static, like a detuned radio unable to tap into the specific frequencies. The doctors counseled me beforehand that it would take time for sounds to make sense. I understood what they meant, and accepted this logically, but nothing can ever fully prepare for you for how your body reacts to situations of uncertainty. My brain became a battlefield between the unconscious and the conscious, with the dueling synapses lobbing salvos of emotion and logic at one another in their pareidolic attempts to find answers within random patterns.
Here, there's no music here
I'm lost in streams of sound
Here, am I nowhere now?
No plan
Wherever I may go
Just where, just there I am
All of the things that are my life
My desire, my beliefs, my moods
Here is my place without a plan
– David Bowie “No Plan”
Towards the end of the following summer, the residual hearing in my right ear disappeared, which made me eligible for a second implantation. The only surgery time available was right before Christmas and I had to call my grandmother and tell her that I could not see her again, and that I was sorry. She wanted the best for me and assured me that it was okay. I resolved to make sure that nothing would get in the way of me spending time with my grandmother for the next Christmas. Unfortunately, she passed away before I could do so I could not fulfill her wish to see me graduate. I dedicated my doctoral thesis in her loving memory.
Time can bring you down, time can bend your knees
Time can break your heart, have you begging please
Begging please….
- Eric Clapton “Tears in Heaven”
It took me 2 years, from hearing loss to CI rehabilitation, to get to a place where I could listen to and enjoy music again and have conversations with people in noisy environments. When I was implanted in my other ear, recovery from was just as rough as the first time, but activation in that ear took a lot less time to program as my brain already knew how to process electrode signals. For a moment, I thought I was hallucinating when music I listened to would pan between the left and right channels. However, I soon realized that I was experiencing life in true stereo for the first time. After so many years, I could finally detect the direction sound was coming from, which gave me the strength to continue with my rehabilitation.
Altogether, I wound up spending 7 ½ years in graduate school with a minimum of papers, which many would consider a death sentence for academia prospects. Still, I forged ahead and secured a postdoc at the University of North Carolina, Chapel Hill and spent several years studying epigenetics in fruit flies. At the time I was applying for grants, several agencies included a section where applicants could explain discrepancies and life events that may have affected their publication record. I detailed my struggles in those sections and sent in my applications. I did not succeed in getting funding from those grants. I remember one of the reviewers remarking how I needed to publish a lot as a postdoc or I would not make it in academia, with no mention whatsoever of the life events that I went through. In knowing how reviewers do not read everything in a proposal, I question if reviewers actually read the documentation section and take into account obstacles that happen in people’s lives. In any case, it was clear that continuing in this traditional academic career path would be nothing more than going through the motions, with one foot in front of the other.
And I'm stuck in a shack down the back of the sea
Oh, and I'm alive and I'm alone inside a sick, sick dream
Oh, is it me, is it me that feels so weak?
I cannot deceive but I find it hard to speak
The hardest walk you could ever take
Is the walk you take from A to B to C
- The Jesus and Mary Chain “The Hardest Walk”
For the majority of my life, I never felt like I truly belonged anywhere. I was bullied by hearing students and adults throughout my adolescence. Those who did not approve of the bullying simply stood by the sidelines and averted their eyes. Perhaps I could have looked back on these times with more fondness if I was more involved with the deaf community. That never came to be, as I was told through the grapevine that deaf members of my family were upset and angry when I first got hearing aids as a young kid; they were even more upset about my decision to get cochlear implants. Cochlear implantation continues to be a contentious issue for many deaf people, who view it as a betrayal and rejection of deaf community and culture. I know now that there are many deaf people who welcome those with cochlear implants, but as a despondent deaf kid coming of age, I felt that it was only a matter of time before I would have been rejected from the deaf community as well, so I rejected the deaf community first.
Instead, I embraced the solitude that my deafness foisted upon me and adjusted my social habits in how I interacted with hearing people, for better or worse. Looking back, this defense mechanism had huge ramifications on my social skills that greatly influenced the future trajectory of my life, including my career. At one time, I thought that science research would be perfect – surrounded by dusty tomes and papers on a cluttered desk, my mind preoccupied with fantastic biology puzzles, and a minimum of human interaction. Of course, now that I am a scientist, I see that this was a pretty naïve viewpoint on my part. I had hoped that academia would be this enlightening, welcoming, and supportive place that I had always imagined it to be. I sacrificed two decades of my life in this endeavor, only to be told implicitly that I wasn’t worthy enough for future consideration as an academic. It was seemingly yet another rejection from a community that I had sought very hard for acceptance from…..
Hey!
Don't come around here no more
Don't come around here no more
Whatever you're lookin' for
Hey! Don't come around here no more
-Tom Petty “Don’t Come Around Here No More”
or so I thought. I am now an Assistant Professor of Biology at Clayton State University, a public undergraduate institution (PUI) with wonderful and caring faculty and students. I have found colleagues and friends who share my values in building a better STEM for everyone through the Open Life Science organization and the Genomics Education Partnership faculty collective. I am married to the most amazing and wonderful person that I have ever known. I am here now, writing this blog post and telling my story for The Mind Hears. If you had told me five years ago that this world would become real, I would not have believed it. Yet here it is, and for the first time in my life, I am holding on with both hands and never letting go. For the first time ever, life looked a little bit brighter.
My life has been extraordinary
Blessed and cursed and won
Time heals but I'm forever broken
By and by the way
Have you ever heard the words
I'm singing in these songs?
It's for the girl I've loved all along
Can a taste of love be so wrong?
As all things must surely have to end
And great loves will one day have to part
I know that I am meant for this world
- The Smashing Pumpkins “Muzzle”
video with images and music that capture Stephen’s journey
Dr. Stephen Klusza is a developmental geneticist who received both his B.S. and Ph.D. degrees in Biological Sciences at Florida State University and performed research in fruit fly epigenetics as a postdoctoral researcher at the University of North Carolina at Chapel Hill. As an Assistant Professor of Biology at Clayton State University in Morrow, GA, Dr. Klusza is interested in creating accessible and equitable low/no-cost educational resources and research opportunities to increase accessibility in education for all students. He also serves as the current Chair of the Diversity, Equity, and Inclusion Committee for the Genomics Education Partnership and advocates for disability representation in STEM and academia. @codebiologist
The Mind Hears 