This post was originally published as an opinion piece within Inside Higher Education in February 2022. Since then, I’ve learned that some graduate schools in the US ask that letter writers not mention disability, citing section 5.04 of the US Education Reform Act. In my opinion, keeping disability or deafness out of reference letters misses critical opportunities both for conversations with mentees about disclosure and for demonstrating how disabled experiences enhance traits needed for success, thereby rejecting the deficit model. If done thoughtfully, such efforts can empower disabled or deaf mentees, de-stigmatize disability and erode academic ableism.
Maybe the best approach depends on the situation. What do you think?
Reference letter–writing season is upon us, and you may be wondering how to approach writing about the disabilities of students and colleagues you are recommending. Letters of reference are critical components of admissions, hiring and promotion. But because letter readers tend to read between the lines, even just mentioning a disability can be a red flag, as Amy Vidali, an associate professor at the University of Colorado at Denver, has noted. For example, the decision of when/how to disclose deafness in the job search came up often when The Mind Hears surveyed deaf and hard of hearing academics about their job search experiences.
As a part-deaf full professor who has navigated her entire career with a disability, I’ve been on all sides of the desk. I’ve been the mentee cringing at the misrepresentation of my disability, I’ve been the mentor wondering how to frame my mentee’s skills in the best light and I’ve been the letter reader assessing strengths and weaknesses of candidates. Here, I offer some specific suggestions.
You should never disclose someone’s disability without their approval. Even if someone has a visible disability, the letter readers may not yet have met your mentee. Please don’t presume that disclosing disability benefits candidates because “the committee likes to see disability for diversity.” Committees committed to equity are still vulnerable to the pervasive ableism that drives discrimination and harassment of people with disabilities within academe and our society. Admissions and hiring committees are much more likely to admit/hire an abled person.
For example, the U.S. Bureau of Labor statistics reports that, in 2020, only 26 percent of disabled people with bachelor’s degrees were employed, compared to 72 percent of able-bodied people with bachelor’s degrees. Asking your mentee for approval to mention their disability need not be awkward if you are prepared to explain why you think that mentioning their disability in your letter would be beneficial.
Guidelines for Having the Conversation
If you haven’t already, ask how the person requesting the reference letter describes their disability. Do they use person-first or disability-first language? Some folks prefer medical based terms like “hearing impaired,” while others prefer culture-based terms like “Deaf” (with a capital “D”). In my case, I prefer “part-deaf” or “part-Deaf” to either “hard of hearing” or “deaf,” because it expresses that while I have residual hearing, my hearing loss is significant enough that just speaking a little louder is not going to accommodate my disability. The descriptor “part-deaf” is not yet standard, so I greatly appreciate it when folks check in with me about how I describe my disability.
Please don’t guess the preferences of your mentee. Also, consider that some people may not want you to describe them as disabled and would prefer other labels such as “neurodiverse,” “having chronic illness,” “Deaf” and so on.
When explaining why you want to mention their disability in your letter, share with your mentee specific character traits that you notice them employing as they navigate challenges associated with their disability. Are they a problem solver? Do they show resilience? Are they a great self-advocate?
My advice is not to mention any accommodations that your disabled mentee uses. While you might be tempted to show that accommodations “fix the disability,” the deficit framing doesn’t center your mentee’s skills and provides the letter reader with ableist reasons to rank your mentee lower than other abled applicants or nominees.
We don’t often get opportunities to tell people about the strengths that we see in them, and this conversation with your mentee is a great opportunity to do just that. Because of the widespread stigmatization of disability, we also rarely talk openly about it, so you might feel uncomfortable bringing up this topic.
My advice is to keep the conversation authentic and very specific. Drifting away from authenticity leaves you vulnerable to casting the disabled person as inspirational; such casting is othering and harmful. Stella Young called this phenomenon “inspiration porn,” because it serves to make the abled feel good while objectifying people with disabilities. Additionally, saying that a person inspires you centers your experience and not your mentee’s. Yes, this is tricky ground! You may, in fact, find someone inspiring. Yet keeping your characterizations authentic and specific helps avoid inspiration porn.
For example, instead of saying, “It is incredible how Michele managed to advance to full professor while disabled,” you could say, “Michele’s experiences as a disabled academic contribute to her success, as she has developed exceptional problem-solving skills, resilience when faced with inaccessible situations, self-advocacy to adjust to inaccessible situations and time/energy management to prioritize important tasks.” For your letter to be effective, you can also provide specific examples of those skills. You could follow up with, “For instance, in noisy settings that present a challenge for part-deaf folks, Michele either extracts critical information using visual cues or, if the conversation is lengthy or particularly important, she effectively self-advocates by adjusting the conversation toward a quieter setting and/or harnessing technologic solutions.”
Unless we use template letters of references with standard language, our letters will be subjective and vulnerable to either our own biases or the biases of the letter readers. But template letters don’t provide the rich information that guides hiring, admission and promotion decisions. What we can do instead is take a thoughtful and critical look at how we frame difference and disability in our letters of reference, as Vidali and Posselt have recommended. Here are some first steps.
Please don’t say that the person has “overcome their disability.” We live with our disabilities; we can’t erase them. We don’t say that first-generation college students overcome their families. Why say this about disability? In addition, the framing of the disabled person as an overcomer steers you well into the inspiration-porn minefield.
Instead, you can acknowledge that the disabled person faces disadvantages (describe specifics) with (insert adjective) skill and self-advocacy (followed by specific examples). This framing acknowledges that navigating life with a disability requires constant effort and draws attention to valuable skills.
Unless they say so, avoid writing, “Despite her disability …” or “You would never know that he has a disability.” Such phrases have strong ableist undertones. While your intention in writing those phrases is to ease concerns of the letter reader, this deficit framing does not center the skills of your mentee, which is the goal of your letter of reference.
I will add that mentioning the quality of speech of deaf and hard of hearing mentees in your letter focuses on the deficit of deafness and assimilation into predominantly hearing environments (see The Mind Hear’s post entitled Eloquence is overrated). Check with you mentee if they want their speech mentioned in the letter.
Finally, in your mentee’s conversation with you, they may say that they don’t want you mentioning their disability because either they don’t want to disclose or they plan to disclose in some other way. They know best how to present themselves.
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.
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.
Location: UCL, London UK Field of expertise: Quantum Physics @victorianphysic
photo credit: Hannah Coleman
Tell us about your background
I have had hearing loss since I was 14 months old, having glue ear treated with grommets that led to scarring on my ear drums. I lip read as a child and this covered my hearing loss until I was in Sixth Form, when I contracted a severe ear infection in both ears. After treatment, I spent several years trying to find the cause of my hearing loss, but it wasn’t until after I had finished my BSc and MSc that I started to become involved in the Deaf community. My family are all hearing, and we are Christians. My brother is learning BSL and the rest of the family have all indicated that they would like to learn. I went to a local comprehensive, and then to a boarding school for sixth form where I was a day pupil. I then went to university in Cardiff for my BSc, and UCL for my MSc and am now working on my PhD.
How did you get to where you are?
I have always wanted to study Physics; my earliest memories are from stargazing and when I discovered I could study space as a career when I was 12 I was ecstatic. As I learned more Physics, I realised that space wasn’t even my favourite sub category of Physics- that belonged to magnetism. A family friend started a PhD in my teens and that was when I was determined to do one myself, in Physics. All I ever wanted to do was study Physics all the time. I wear an insulin pump, which is affected by magnetic fields. My biggest concern was that I would have to adapt my diabetes treatment so that I could study what I wanted to.
What is a professional challenge you have faced related to your deafness? How have you mitigated this challenge?
As I progressed through my BSc I realised that other people’s perceptions of me were always going to be my biggest challenge; for some reason my disabilities are the thing that people think are going to prevent me from achieving my goals. To mitigate this, I do what I do and I do it well. Just because I have a different work pattern or have to take extra days off when my diabetes gets in the way or I have another ear infection doesn’t mean I’m not an excellent physicist.
What is an example of accommodation that you either use or would like to use in your current job?
I work from home (which started way before the pandemic!) and am allowed to work flexible hours. I have captioners for video meetings, who have been trained in the vocabulary that is used in my field to make them much more accurate than automatic captions.
What advice would you give your former self?
You work differently to other people, and that doesn’t make you wrong or worse than anybody else, or not able to be a Physicist. You are an excellent problem solver. Go to the GP and get treatment for depression and anxiety. It is not a failure to need help. You will feel so much more yourself when your brain chemicals are balanced properly.
Any funny stories you want to share?
In my undergrad, I had concessions for my hearing loss, like I sat near the front of the lecture hall, etc. I was also allowed to ask lectures to shave their beards if it got in the way of lip reading!
Elli is a Quantum Physicist based in the UK. She is deaf, diabetic and disabled, and uses a wheelchair. Elli also wears an insulin pump with continuous glucose monitoring sensors, which can be a problem around magnets, her main research focus! Despite having multiple hearing problems and operations since childhood, she was only diagnosed in June 2020 with hearing loss, but has embraced her deaf identity since then, getting involved in Deaf Rainbow UK, her local Deaf Association and learning BSL.
Elli is a passionate advocate for disabled academics and has spoken at several events about being a disabled woman in Physics.
Elli did her BSc in Physics at Cardiff University, and her MSc at UCL. She is currently on a medical break from her PhD in Quantum Physics but intends to return to academia one day. In the meantime, she is writing a series of picture books about her disabilities for her friend’s daughter and a novel about being diagnosed and discovering the Deaf community in early adulthood, learning BSL, tutoring maths and physics, and being a Guide leader on Zoom.
Elli is married to Sam, and they live in Cambridge, UK. Elli is currently persuading Sam that they need an academic cat!
Hi folks. I can’t wait to learn with you this semester. But first, an admission before we can get started. And I call this an admission because it feels like I’ve done something wrong, that I’ve made a mistake to which I must confess. Apologize? Confess? Perhaps it is both.
I am deaf.
But I have done nothing wrong. (I must remind myself of this.)
Well, almost deaf. I use the word “deaf” to placate the hearing; when I use the phrase “hard of hearing” with hearing folks it is too often misinterpreted as an invitation to a needling Q&A session. The word “deaf” is just a more concrete, absolute word for the uninitiated to accept. So “deaf” it is. But I’m not deaf—I can hear, barely.
Surprised? I thought so. I am, too.
When I was your age, I sat in the back row of the classroom, mostly silent, in denial and driven by fear.
Look at me now: loud, confident, witty, encouraging in our classroom each day. Standing at ease, fielding questions, strolling the classroom as you ponder, think, write. Crushing your stereotypes and assumptions about what it means and looks like to be disabled—beautiful, smart, funny. And yes, I know I’m the one person in your life besides your grandpa that wears hearing aids.
Your curiosity about my deafness is endearing but exposes the limitations of your experience. The first and (usually only) question: How did it happen? Why are you deaf?
Wouldn’t I love to know. Like there was a playground mishap and now a little scar on my eardrum that blocks some sound from going in and out. No, children. No, there is no exotic origin; no riveting nor heartwarming story. Deaf for me just is. Has been. Will always be.
Back to the classroom. I’ll let you in on the best-kept secret of my trade because we need to talk about this if our time together is going to matter.
Great teaching starts with trusting students. Think back: I bet the best teachers that you’ve had, at times, let go of their control in the classroom. They understood that classrooms are a space for collaborative invention. They didn’t talk at you, they learned with you, even abandoning a mediocre lesson if it meant the reward—your engagement and investment—was worth the risk of class failing extravagantly as it unfolded. Great teachers trust their students to contribute to the classroom as knowledgeable, interested peers. And again and again, I’ve seen students rise to this challenge they’re given and thrive.
But I think that trusting students looks a little different for teachers with disabilities, like me.
No matter how student-centered or democratic a classroom dynamic is, professors always have power over students. But what if it’s the other way around? What if a disability puts the professor at the mercy of her class? What if I’m at your mercy?
Is there anything as vulnerable as a deaf person standing in front of an expectant audience? One that is looking to be led, to be given something (knowledge—something so abstract, fragile, personal)? Sometimes my colleagues tell me about their teaching nightmares: showing up naked to class; going to the wrong classroom; being forced to teach a class on which they know nothing about; showing up to take a test for which they haven’t studied. This is anxiety working itself out. The anxiety of a HoH professor is palpably different from this. We can prepare and utilize the latest microphones and other accommodations, but it always happens. Being exposed, I mean.
It happens often. A student raises their hand and offers a question. I’m excited: questions mean students are listening and engaging. It also means I’ve created a classroom in which they feel comfortable and vulnerable. They trust me. But instead of a question, I hear muffled patches about analysis and … argument, … I think.
Crap. Time to sweat. There’s a host of solutions and I need to flip through them all to 1) keep the cadence going and 2) assure the student doesn’t feel awkward. Do I:
Ask the student to repeat themselves? Power imbalance makes that tricky.
Ask a student closer to me to “translate”–basically re-stating what the first student said? There’s no guarantee I’ll understand the translator; there’s additional burden on folks in the front rows that they didn’t ask for.
Play pretend: “That’s a great question. How about I offer it to the class first to see what your classmates have to say?” Or defer and delay: “That’s a great question. How about we chat after class about that?” But what if they asked a simple yes/no question? Awkward.
And, recently, ask the student to briefly pull down their mask so I can read their lips while they talk? (Side note: the painful, masked-up hell of this pandemic is worthy of another letter.)
Over the years, attentive friends and family members have learned to know and even expect “the look;” the exact facial expression I make when I have no clue what someone is saying. I merely had to turn to them, and they’d repeat (this is also the second option, above). This degree of trust took years to build.
As the room sits silently waiting for my answer, I’ve got “the look” on my face, but not a single student understands. Our classroom was spirited, brisk, and it’s now still and all eyes on me.
Which option is safe? On whom do I call? Who can I trust? The nightmare plays out yet again.
You registered for my class, but you didn’t sign up to accommodate and well, here I am, broken and all. So here I sit, writing this letter, warning you about the role you’re about to take on whether you like it or not: my teacher.
Sara Heaser is a Lecturer of English at the University of Wisconsin La Crosse, where she specializes in basic/co-requisite and first-year writing curriculum, pedagogy, and program development. Her writing about teaching has been featured on the Bedford Bits blog, the Journal of the Scholarship of Teaching and Learning, and Composition Studies. Her favorite aspects of her job are mentoring undergraduate education students and new teachers, tutoring adult learners, and teaching first-year, first-semester writing students. She is an alum of the Dartmouth Summer Seminar for Studies in Composition Research and Winona State University.
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.
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.
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 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.
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.
Current Title: Associate Professor of Writing & Rhetoric, Syracuse University
Field of expertise: Rhetorics of Technology
Years of experience: 16
What is your Background?
I became severely/profoundly deaf after a bout of spinal meningitis at the age of 2. I was fitted with hearing aids and sent to regular speech therapy sessions quickly after my parents discovered my deafness. My educational path has been twisty, largely due to having been what would now be called “twice exceptional.” I began my education in Montessori prior to getting sick, but the school was not welcoming when I was able to return. From there, I went into the Arkansas public school system, where pre-school and kindergarten classes grouped all the children with disabilities together with two teachers. My mother advocated for me to move to mainstream classes, where I moved for part of kindergarten and on through second grade. The following year, I skipped third grade and spent fourth and fifth grades as a scholarship student at a wealthy, private K-8 school. Then I moved to a private religious school for sixth through eleventh grades, dropped out early because the school wouldn’t consider early graduation, and got myself admitted to the local state university, which had an open admissions policy. There, I made it for a couple of years, dropped out to work for a while, then returned and finished my BA while working full time. I realized that I really liked school a lot more than I liked my job, although the job’s tuition reimbursement program paid for the rest of my undergrad work, and I noticed that professors got to keep going to school forever. To be a professor, I clearly needed a doctorate. So, I quit my job the same week that I graduated with my BA, got an MA at the same university, and then moved out of state for my PhD. I had no accommodations during any of my education and really had no idea what might be available, aside from sign language interpretation. And since I never learned to sign, that wasn’t really an option.
How did you get to where you are? For example: How did you decide on your field? How did you decide to pursue a higher degree in your field? What concerns did you have when you started out?
My mother was a writer and I always wrote with her, first with crayons and then with our Atari computer. It was just always something I did, and I started publishing as a teenager in local venues. So, it was natural to double-major in English and Professional & Technical Writing and then to continue to focus on Writing Studies and Rhetorical Studies through my grad work. As someone who had become very distanced from their own deafness, I had no concerns about my own education when I began, no awareness of listening fatigue or its impact. I had some worries about whether or not I could teach in a traditional classroom, but through happenstance I began my teaching career in online learning environments. I just assumed that this was the wave of the future and that I would continue doing most if not all of my teaching online — something that turned out not to be true until the pandemic hit.
What is the biggest professional challenge (as educator or researcher)? How do you mitigate this challenge?
My biggest challenge happened on the tenure track, when I had ideas, archival research, and arguments, but was largely unable to get my writing done while in a research-intensive job. After teaching entirely in face-to-face classrooms with students from the northeast whose accents were unfamiliar to me and then attending a variety of faculty meetings and talks, I simply didn’t have the energy left to think in ways that facilitated writing my tenure book. At the same time, I was developing advanced degenerative arthritis that went undiagnosed for longer than it should have. It took a while for me to understand that this amount of listening was causing significant listening fatigue or that a mix of listening fatigue and chronic pain will almost certainly short out one’s thinking capacity, that I could negotiate accommodations, or what accommodations might be useful for me. And as someone who had relied on passing for most of her life and knew no other deaf professors, I had no community to rely on for answers. Now that I’ve spent 6ish years sorting through internalized ableism, building community, setting limits on how much listening I do each day, negotiating accommodations through the ADA office, and educating my colleagues about CART and my availability, my research productivity has skyrocketed.
What is an example of accommodation that you either use or would like to use in your current job?
I use CART at all talks and large faculty meetings, teach in a variety of modalities (face-to-face, hybrid, and online), and schedule listening breaks throughout the day. To help manage chronic pain, I’ve arranged to teach in my own building or those right next door to it and moved my parking space. Our campus ADA Advocate has been an invaluable resource for negotiating all of this.
What advice would you give your former self?
Look for other people like you. Talk to them. Don’t feel like you have to do this alone.
Any funny stories you want to share?
Working with my last smart hearing aid, a Starkey Halo, led to a whole new research trajectory on algorithmically driven medical wearables. One of the moments that got me there is hilarious. The hearing aid was so new that I hadn’t yet changed the first battery. I was home alone on a dark and stormy night, prepping a chicken for roasting. Suddenly, a male voice said “Battery!” right in my ear and let me tell you, that chicken went flying. That was how I learned that the aid would talk to me when its battery was dying, which led to a host of questions about user interaction, why the default voice was white, male, and American, and other cultural aspects of this particular design.
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.
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
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?
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
- 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…..
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”
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