Deaf and hard of hearing faculty often lack role models or colleagues to talk with about the challenges of navigating a career with hearing loss. This isolation can be pronounced when we work at institutions that serve hearing students. This isolation often results in us developing or failing to develop solutions on our own and, in many cases, reinventing wheels that others have already developed. Broadening the mutual mentoring network of deaf and hard of hearing faculty will reduce our isolation and facilitate sharing of strategies for success. The Mind Hears has been creating community and providing a peer-mentoring platform through our blog posts since 2018. We recently hosted two on-line open house sessions in September 2022 and April 2023 to provide an opportunity for folks to meet and communicate with other deaf or hard of hearing faculty in real time. In this post, we will share what worked well in these sessions and some of the participant feedback.
Some participants form the April open house
Who attended our open house sessions?
We advertised our open house sessions as virtual coffee hour drop-ins on Twitter, The Mind Hears platform itself, Facebook, and LinkedIn. We also emailed invitations directly to some prior blog contributors. We planned the events for 1.5 hours, at a time that we hoped would work for multiple countries. We chose Zoom as the platform and set up the meeting to require pre-registration. Funding for the drop-in sessions was provided through a minigrant from AccessADVANCE, an NSF funded project at the University of Washington to increase the participation and advancement of women with disabilities in academic STEM (Science, Technology, Engineering, and Math) careers. We had ~15 attendees in September and ~10 attendees in April, including The Mind Hears co-founders, Ana and Michele, and The Mind Hears social media director, Stephanie. The remaining attendees ranged from postdoctoral researchers to administrators to faculty from a variety of institutions in the US and UK
Full communication Access
Our highest priority was ensuring that every person was able to participate fully in the conversations. For the first open house, we provided two ASL (American Sign Language) interpreters and used live auto-captions built into Zoom. The auto-captions did not work well for all accents, and for the April open house we added CART (Caption Access Real Time) transcription along with ASL interpreters and zoom auto-captions. We also made abundant use of the zoom chat features for comments and side conversations. Participants in the more recent session reported a variety of preferences for communication – some preferred the auto-captions, some preferred CART, and some preferred ASL interpreters for the spoken part of the conversations. Even though auto-captions are not as accurate as CART transcription, some preferred auto-captions because it has less lag time than CART and the words can be placed near the video of the person speaking to augment speech reading. This taught us that successful on-line meetings of deaf and hard of hearing people should have both CART and auto-captions along with signed language interpreters.
Another element to providing accessible conversation was to allow pauses during the discussion. This allows interpreters and CART to catch up and gives everyone a bit of time to process language inputs. We did a better job of this in the April open house than the September open house, which had also included more people and a faster paced conversation. When conversation pace was too fast, some folks used the chat function to engage others in side conversations – this meant that there were two conversations going on at once. In the slower paced April meeting, comments added to the chat were incorporated into the main discussion, which allowed everyone to follow the primary conversation.
What people reported getting out of the open house sessions
The participants (~15 in Sept and ~10 in April) attended to find networking opportunities and a chance to share lived experiences and support each other. The sessions were both 90 minutes long and while we invited folks to come and go as their schedule permits, nearly all participants stayed for the entire session. Conversations ranged from transcription software recommendations, to deaf identity, to learning signed languages, etc. Feedback from participants indicated that they felt supported, listened to, valued and optimistic.
Going forward
For both sessions we prepared some question prompts beforehand, but found that conversation flowing naturally after a round of introductions. Participants reported excitement at being able to share conversation topics that were not as readily shared with their hearing colleagues. Future sessions might focus on particular pre-selected topics or spotlight a profiled person. We would also like to increase international participation, which might mean expanding both spoken and signed languages.
We welcome ideas for future topics of discussion in our open houses, or further modifications to content and form. If there is something that you would like to talk about or have other ideas for getting together or creating community please leave comments below.
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.
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.
Yours,
Professor Heaser
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.
Current Title: Associate Professor of Writing & Rhetoric, Syracuse University
Field of expertise: Rhetorics of Technology
Years of experience: 16
website: KristaKennedy.net
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.
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
This multi-media autobiographical post by Dr. Stephen Klusza has two parts. Here, in part 1, Stephen shares with us his journey leading up to his decision to get a cochlear implant in graduate school. Part 2 will be released in late August 2021. Part 1 includes a video with song excerpts and images that augment Stephen’s story at the bottom of this page. You can find part 2 at this link.
— Stephen
I was born in the most perfect year, you see.
There was nothing too special about 1978 per se, but some of my most cherished moments were only a few years away. Born in the hazy and humid throes of Florida summer, I was just another toddler trying to make sense of the world around me. Around then, my parents grew increasingly concerned when I was not attempting to talk like other kids my age, but they were assured that some kids took longer than others to communicate. When I was 2½ years old, they knew something was wrong. As they called for me from behind, I did not respond; but my eyes lit up with a wide grin when they came into view.
Can you hear me, can you hear me running?
Can you hear me running, can you hear me calling you?– Mike and the Mechanics “Silent Running”
I had moderate-to-profound sensorineural hearing loss. I had had severe asthma for the first few years of my life that was resistant to treatment. A few times during my frequent hospital stays, my fevers spiked to 106-107˚ F and I was placed on top of bags of ice to save my life. It was thought that the recurrent fevers had damaged my hearing, and my parents were encouraged to fit me with hearing aids to amplify what I could hear.
Me mind on fire
Me soul on fire, feeling hot, hot, hot – Buster Poindexter “Hot, Hot, Hot”
If I could describe the early years of my home in one word, it would be music. There was nary a weekend when the record player wasn’t spinning the likes of Black Sabbath, Foreigner, Jethro Tull, The Cars, Jimi Hendrix, and hundreds of other bands. Then in 1981, something happened that transformed my life completely – MTV. With my new hearing aids, I soaked in the wondrous sounds from the stereo system, and the music from MTV ‘music videos’. At such a young age, the videos rarely ever made sense and my partial hearing loss meant I never understood the lyrics, but that was never an obstacle to my appreciation of music. I heard the wide-ranging melodies of 80s (rock to new wave to pop); this was combined with watching the artistry of the videos painting worlds I had never seen, the expressive emotions on the singers’ faces, and the translation of stories that brought the characters’ lives into pure sound. It did not matter if I could not understand the words, the music spoke to me more than words ever could.
I hear the drums echoing tonight
But she hears only whispers of some quiet conversation – Toto “Africa”
My memories of those times are not as sharp now (almost four decades ago). I still have the feeling of wonderment of all the videos that I voraciously devoured – Michael Jackson’s “Billie Jean”, Elton John’s “I Guess That’s Why They Call It the Blues”, Tina Turner’s “Private Dancer”, The Police “Wrapped Around Your Finger”, and others. I am very aware of the intoxicating bias of nostalgia, but it truly felt like a blissful, creative time. I loved watching the videos at a loud volume and bopping along to songs, such as Cyndi Lauper’s “Girls Just Want to Have Fun”. Looking back, my mother must have been exasperated at some of the songs I became obsessed with, particularly those in which I was able to make out a few lyrics. I distinctly remember singing the chorus “multiple” times from that one-hit wonder song by Madness:
Our house, in the middle of our street
Our house, in the middle of our street
Our house, in the middle of our street
Our house, in the middle of our…- Madness “Our House”
My love of 80s music paralleled my love of 80s movies and TV. I loved several science-themed movies that had the 80s-style poetic license in full effect, such as “Weird Science”, “My Science Project”, and “The Last Starfighter”, among others. My first exposure to the idea of college was the movie “Real Genius”, which showed extremely bright young people working on laser technology — which blew my still-developing mind. It would be many years before I could go to college, but I was already looking forward to skating on ice-covered dorm hallways, learning science, and building exciting inventions.
Gimme a new sensation
In a place that has no name
Something tells me I'll never be the same…- The Comsat Angels “I’m Falling”
As an adolescent, I experienced the usual share of high and low points, along with the difficulties of being a hard-of-hearing/deaf person in hearing schools. Nevertheless, I excelled in academics and began a love affair with genetics during Advanced Placement Biology in high school. All it took was my teacher Mr. Force (that was really his name!) introducing me to the Punnett Square, and I fell head over heels. I knew then that I wanted to major in Biology to become a geneticist. After graduation and a break for a couple of years, I went to graduate school to specialize in developmental genetics and become a professor of biology. The academic career path was the only one I knew at the time to do the science that I loved so dearly.
One night after working out, everything sounded off-pitch with my hearing aids on. I thought there was something wrong with them and I planned to have them checked out. Later, I woke up in the middle of the night with a splitting headache and thunderous ringing and feedback in my ears. I barely slept that night.
And I can't get it out of my head
No, I can't get it out of my head
Now my old world is gone for dead
'Cause I can't get it out of my head…- Electric Light Orchestra “I Can’t Get It Out Of My Head”
My way of understanding was shattered. Everything came to an absolute standstill. I lost count of the number of medical appointments that followed, and time slowed to a crawl. My mom accompanied me to one of my appointments and the doctor said, “I don’t know what’s wrong with your son”. My mom, always optimistic and full of life, became instantly deflated. I will forever remember the singular sensation in that moment of hearing the doctor’s uncertainty. It is like goose bumps, only it felt like a slow but steady wash of fluid electrocuting me. I remember the feeling of crackling, like lightning striking a strong tree and destroying it into a million shards of glowing embers. I was faced with the prospect that this was serious and potentially irreversible. Then came a creeping fear that music may forever be out of my reach from that point on. One of the most joyous parts of my life was gone. In its place, was a constant onslaught of throbbing, droning tinnitus, screeching, and roaring to an audience of one inside my head. With no relief in sight, I was no longer compatible with my body, and I was abandoned.
So it’s all come back round to breaking apart again
Breaking apart like I’m made up of glass again
Making it up behind my back again
Holding my breath for the fear of sleep again
Holding it up behind my head again
Cut in deep to the heart of the bone again
Round and round and round
And it’s coming apart again
Over and over and over- The Cure “Disintegration”
When all this happened, I was well into the fourth year of grad school. Prior to this sudden hearing loss and tinnitus, I had developed significant anxiety over my dissertation research. Grad school is often extremely stressful, and I had multiple experiments in progress at any one time. After that fateful night, I tried to go straight back to doing research and notified my mentor and lab mates that my hearing was messed up. I tried to keep up with my experiments, desperate for distraction from the severe tinnitus I was experiencing, but I started falling behind. The weekly meetings with my mentor and my camaraderie with my lab mates were strained, through no fault of their own. How do we support someone going through such a catastrophic event? How can we find new ways to communicate when the old method no longer works? Is it the right thing to do to let them be, or should we give help that is unsolicited? These are hard questions when someone is going through any significant loss and there are no right answers.
I attended lab meetings and tried my best to follow with the speech reading skills I had always used in conjunction with my hearing. At best, it was passable; at worst, I missed everything completely. I still had teaching assistantship work to carry out and carried around a dry-erase board and marker for communication. This system was fine for asking a question but was woefully inadequate for conversation. It was very isolating, and I did not know how much longer I could go on like this. I did not know sign language and even if I did, there was no one else to sign with. If I did manage to complete grad school and receive a PhD, it would take me longer than 5 years, further endangering my chances at success in academia. After working so hard and sacrificing so much to prove to the world and myself that I could make it as a hard-of-hearing person, everything seemed insurmountable.
In a little while
I'll be gone
The moment's already passed
Yeah, it's gone
And I'm not here
This isn't happening
I'm not here
I'm not here
-Radiohead "How to Disappear Completely"
I still cannot adequately describe my headspace during these events. Words failed me then, as they do now. In the movie Sound of Metal, Ruben experienced his loss by the simple fading of the crowd and the encroaching of the low, throbbing drone. My experience was more complicated than that. It would be a long time before I came across a song that stitched my disparate and fragmented memories with threads of undulating low end, trebly screeches, pulsing frequencies, and distant, indecipherable voices from the point of no return. This is not a song as most people understand them to be. This piece has traces of accidental musical notes underneath a burgeoning discord. The lyrics are crushed beyond recognition. Thanks to the kindness of Andrew Grant/The Vomit Arsonist, I have created a video of his song “no one can help you”, with the lyrics in the description (link to “No one can help you” video). Whether you wish to experience this or not, you have the choice that I never had.
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
After early childhood in a segregated setting for students with disabilities in Canada, I was in mainstream classrooms in both public or private U.S. schools. I went to Stanford University for my BA and MA (both in Psychology) and then University of Wisconsin at Madison for my PhD in Educational Psychology.
What do you do now?
I wear several hats in my professional life. I am a full professor at The University of Texas at Austin’s College of Education in the Department of Educational Psychology, with a courtesy appointment in Special Education. I am the Founding Director of the National Deaf Center on Postsecondary Outcomes. I am also the Director of Research for Drama for Schools, a partnership with UT’s College of Fine Arts, and an Editor of Perspectives on Deafness at Oxford University Press. But no single role really captures what I do, so I started a new website: stephaniecawthon.com. Do check it out.
What kind of hearing loss do you have?
Both ears, sensorineural and congenital, roughly 50DB-55DB (moderate range). In practical terms, speech is fine in some situations, not in others. I’m missing much of my upper range. I lip read a lot and fill in gaps with contextual clues even when I don’t realize it. Talking to me from the other room is a sure fire way to make sure I don’t know what you’re saying.
How do you identify?
These days, I identify as deaf, inclusively defined. Until about five years ago, hard-of-hearing. Never as hearing, although many in my family would have described me that way.
Do you use an assistive listening device?
I got hearing aids at about age 4 and used them continuously in public until recently. Now I use them as additional support in settings that are not accessible. I also appreciate captions to help fill in gaps when people are not signing.
Do you sign?
Some. I first took a few ASL courses in college (liberating!) and then more much later, when I had deaf graduate students and colleagues who signed. I’ve had some private tutoring and learned a great deal working with a wide range of signers and interpreters over the years. Fingerspelling (expressive or receptive) at a natural pace is still the most difficult part of the language for me.
How do you communicate at work?
If there is a deaf person in the room who signs, I will sign. In the last few years, this includes public presentations, which is terrifying — particularly when the interpreter is new or doesn’t know me. If the group is all non-signers, I will voice and, depending on the accessibility and availability of interpreters, will ask for access support for receptive language. When I am teaching a large class, I will sometimes sign, especially if I know I will be relying on interpreters for receptive language to communicate with my students. It’s too hard to switch back and forth from voicing in English and seeing ASL.
What advice do you have to your former self?
I pretty much went full steam ahead for the 20 years from PhD and through full professor promotion. At one point, a senior colleague advised me to remember academia is a marathon, not a sprint, and to slow down. That felt pretty entitled coming from someone who didn’t have to face the negative biases and elevated standards of my cohort — especially compared with that of 30 years ago, when jobs were more plentiful and budgets were flush. Instead, my advice is to pay attention to the physical and psychological requirements of running a very fast marathon, because that is the reality for anyone facing an uphill battle in light of audism and other -isms that are still very much the drivers of perspectives in higher education. I now know the tremendous energy and personal costs required of running that fast marathon. But I also now know what helps: earlier bedtimes, more boundaries around the speed of responding to requests, the magic of saying “no,” yoga, therapy, relying on a support network, finding a creative outlet, and taking vacations.
Has your professional identity as a deaf academic evolved?
I think it’s pretty clear from my research that I have a personal connection to deaf people, but there was rarely a time early in my career when I put my deaf identity front and center in my work. A major pivot point was when my college asked me to be a presenter for a brown bag lunch series. Instead of focusing on a research study or line of inquiry, I presented a personal account of how my professional identity has evolved over the course of my career (so far). I called my presentation “Statistics Don’t Lie ‘Til You’re Trying Not to Be One.” I quite nervously signed it, with a trusted interpreter who knew me well.
Something I name in that presentation — and have been working through ever since — is the twin impact of audism and imposter syndrome. I think many deaf academics and professionals come to realize the extent to which we internalize audism, which then sets up the tyranny of low expectations about us and can contribute to feeling like we’re totally fake (imposter syndrome). This has shown up in subtle and overt ways throughout my lifetime, both personally and professionally — such as the attitude that research in deaf experiences and deaf education isn’t as important as that of other fields. I was even told by a boss once to consider another line of research, because people aren’t really interested in it. Over 100 publications and nearly $25 million in grant funding later, I just smile.
What do you know for sure?
As all ideas that mature, there is a deepening of the core essence of what you are doing. I think I always knew this in a general way, but as I quickly approach 50 — at what is typically the halfway point in an academic career (I finished my PhD just shy of 30) — here’s what I know for sure:
Systemic barriers and opportunities are the long term solution. That kind of work is not what I was trained to do, but I have a passion for it. Working towards systems change is my number one goal for the next half of my career.
Inferences about individual outcomes of deaf people require taking context and deaf perspectives into account. Research is very much about evidence — and how we view that evidence says as much about us as researchers as the data themselves.
Disciplined work and progress in small ways add up fast. Even when you can only do a little, just do a little. I recently read Atomic Habits by James Clear, and it has been the most influential boost in this pandemic productivity malaise.
It’s really hard to keep up with current literature without having a reason to read it. Write so that you have to read, so that you can then write. The most recent article I led, Evidence-Based Practices in Deaf Education: A Call to Center Research and Evaluation on the Experiences of Deaf People, will publish in Review of Research in Education in April 2021, and it was an opportunity to explore new fields and tie those perspectives with what I have already built over the past twenty years.
One of my best and apparently rare skills is asking good questions. This is true in my role as friend, as colleague, as mentor, as supervisor, as leader. I have learned that there’s no right answer to most situations or problems, but there are great ways to think clearly about strategy and decision making when you have a chance to respond to good questions.
I don’t know exactly what I’m going to do next. There’s a shift coming, and I’m in that pause between letting go of one bar on the trapeze and catching the next. I love working in a leadership role and building places where people can thrive. This is inclusive of mentoring graduate students — having them as part of a larger team is such a critical experience in their development — and working with staff, who are some of the most important and under-recognized members of an academic community.
Thought leadership and dissemination is one of the most exciting things that I do. I very much like giving media interviews and graduation speeches, using social media tools to build a community of thinkers, and writing and sharing information that has practical application. I love the intersection of research and communications, especially how strategy makes the whole endeavor coherent, both visually and in terms of message and content. Being asked to be on this blog is part of it! Thank you so much for the invitation.
I am a deaf multilingual in several signed and written languages (and selectively and contextually, sometimes also spoken languages), who grew up in a hearing family. My parents made sure I met deaf role models early on. I obtained my elementary education at the local school, but played with friends and participated in leisure activities at the nearby deaf school. Continuously switching between deaf and hearing people instilled in me a lifelong habit of observing and comparing people, their language habits, and their social behavior in different contexts. After completing my MA in social anthropology in 2001, I started to work at a contract research institute (Fafo Research Foundation), and eventually also obtained my PhD in social anthropology from the University of Oslo in 2012. After a post doctorate at NTNU – Norwegian University of Science and Technology 2015-2017, I started to work as an associate professor at OsloMet – Oslo Metropolitan University, where I was recently promoted to (full) professor.
How did you get to where you are?
Feeling like a half insider, half outsider among both deaf and hearing people for years, I was attracted early on to the thinking and theoretical approaches of social anthropology. Being raised in a family of academics, it was never a question if I should enter higher education, only which field – and I was lucky to find my direction early. After working as a contract researcher for a few years, my research group got a grant from the Norwegian Research Council, which included a PhD scholarship for me. Since I had maneuvered academia with and without interpreters for years, I did not really have any big concerns regarding accessibility, but could feel the impostor syndrome hitting every now and then. However, it was more difficult than I had anticipated to find qualified interpreters who could handle advanced academic discourse in English at a PhD level. When I finally got an agreement with the interpreting service providers that I would be able to work with a team of three interpreters throughout my PhD, things worked out better. Also, a growing international network of deaf academics has been an invaluable asset, as they inspire me, and make my job so much more fun than it would be if I only had to work with hearing academics. Last, but not least – I have a great group of colleagues at OsloMet. At the section for sign language and interpreting, Norwegian sign language is our working language, regardless of hearing status; this has been very important for my work environment, providing a collegiate spirit and a necessary feeling of belonging.
What is the biggest professional challenge you have or have had? How do you mitigate this challenge?
Currently my biggest challenge is the idea that academia and research can be organized according to New Public Management principles, and all the “efficiency improvement” measures that really only put more administrative burden on faculty. I did not obtain a PhD to spend a full working day trying to make sure we get the rooms we need for teaching. Covid times have however put us all in the same boat, so it’s currently mostly about making sure the students get what they are entitled to, and make the best out of it.
What is an example of accommodation that you either use or would like to use in your current job?
Our department has an in-house interpreter who is paid by the university. She does much of the ad hoc interpreting in the hallways, at shorter meetings, and on Zoom, and organizes all other planned and longer interpreting requests that continuously pour in when there are both signers and non-signers at the department and at the university. Had the university instead relied on outside interpreters, the labor of requesting and organizing all the interpreting assignments would fall on us [faculty]. Without our in-house interpreter, we would probably be able to devote less time to our professional work, and would spend more time organizing interpreters.
What is your typical day like?
In these home office days, I start the day with a walk (following son to school) before a hour long virtual “Shut up and write” session with 4-5 colleagues at 9:00. Then there’s planning, planning, administration, teaching preparations, administration, e-mails and meetings for the rest of the day, and I often stop by 5 – 5.30. Then there’s almost always some reading (review, supervision, assessment etc.) to do, which I sometimes do at night, or during one of my favorite times: early Saturday and Sunday mornings, before the family wakes up, with a cup of coffee and a small piece of dark chocolate! But I’ve learned I also need daily breaks, so I often end the day with a TV show and some knitting before bed time.
What advice would you give your former self?
Work with people you like. There’s always brighter times coming when the days are dull. Impostor syndrome is probably one of the most common syndromes among researchers. Believe that you have a unique and valid position and vision, and can make a contribution.
Any funny stories you want to share?
At a dinner for PhD advisors, one of my seatmates started to ask the usual questions about sign language (Is it universal? Why not?), interpreters (Do they work full time? Do you know them?) and deaf people (How deaf are you? Are there any other deaf researchers?), but eventually, I got one unexpected question; “How often do you have to answer these questions, and how much time to you spend answering them?” I made a quick estimate and said with a smile it could last about the time of one course at a conference dinner. A little bit later, I started a conversation with someone at the other side of the table, who soon (and as expected) started to ask the same kind of questions. I swallowed a small sigh, and before I politely prepared myself for another round with the same topic, the first seatmate burst out “Give her a break! Hilde just answered all those questions, and now I hear how stupid they are.” For the rest of the evening, we all talked about anything but sign language, interpreters and deaf people, which does not happen too often (unfortunately).
I was born in Flanders, Belgium to hearing (non-signing) parents. I am the oldest of four. I grew up hard-of-hearing and became deaf in my teenage years. I went to a regular school where I used hearing aids and FM and relied on lipreading. I was raised and educated in Dutch, and learned to sign (Vlaamse Gebarentaal – Flemish Sign Language – VGT) when I was 16, through socializing in the Flemish deaf community. At home with my partner and two children I use VGT. In my personal and professional life, on any given day I use a mixture of languages: Nederlandse Gebarentaal (NGT) (Sign Language of the Netherlands), British Sign Language, International Sign, VGT, Dutch, and English. As a Belgian I can make do in French, and I can understand ASL (or some academic ASL at least).
How did you get to where you are?
After I obtained my first MA degree in Belgium (Disability Studies), I felt that something was missing. I applied (and got funding, quite importantly) to study for an MSc in Deaf Studies at the Centre for Deaf Studies (CDS) at the University of Bristol in 2005. It was one of the best decisions of my life. It felt like coming home, not only in terms of content of the study but also because there were other deaf students, the classes were mainly taught in British Sign Language, some of the professors and lecturers were deaf themselves, and the social life was also in sign. It was in Bristol that I realized I wanted to do more research in Deaf Studies. Bristol also gave me a brilliant network of friends and colleagues.
After I got my degree, I actually got the opportunity to do a PhD at the University of Bristol, but decided to defer the funding for one year because I felt I had done enough studying by then (6 years), and wanted something different that was more practice-oriented. The Flemish deaf association offered me a job in their advocacy team and I decided to take the offer. This was also one of the decisions that have deeply influenced my life and who I am as a researcher and a person. Eventually, one year became five years. Five years of advocacy work (linked to deaf education, access, sign language interpreting services, tv broadcasting, etc.), community work (organizing events, workshops, courses), learning to engage with a great number of different people from all walks of life. It was a great experience.
After five years, I felt it was time to get back to research again, but obviously by that time my funding in Bristol was no longer available. I started to look for PhD funding and in the end got a PhD position at the University of Jyväskylä in Finland. My PhD was about the legal recognition of sign languages — more specifically in Finland and Scotland, where I followed the process from initial campaign to final adopted law. After my PhD I started a post-doc position at the University of Namur in Belgium funded by the Marie Curie Actions, for which I did a study on sign language vitality in Flanders. When that funding ran out, I applied for a few academic jobs and got a position at the University of Applied Sciences Utrecht (HU) in the Netherlands, which is currently my institution. HU is the only university in the Netherlands that trains sign language interpreters (at BA-level) and they also offer a Master in Deaf Studies. I teach both BA and MA students, and am also a senior researcher at the research group ‘Participation through Communication’, where I am responsible for carrying out Deaf Studies and sign language research.
What is the biggest professional challenge you face (as educator or researcher)? How do you mitigate this challenge?
Working with sign language interpreters is definitely one of the biggest challenges, so much so that I decided to make it a professional and research interest of mine 🙂
Being an academic who is deaf (and a woman) is another challenge: when you have critical opinions and are used to voicing these, you are quickly seen as ‘angry’, ‘emotional’, or ‘irritated’.
Not linked to being a deaf academic, but as a researcher in general:
At this stage in my career, I find a real challenge is having to adapt research agendas based on your institution/employer/funding, which means I feel I can never really finish projects. People are asking me for publications, presentations, etc., based on my PhD or postdoc research (I haven’t even yet analysed all the data I collected during my postdoc!). I am now based at an applied university, which means I need to do practice-based research. This is really interesting and fun to do, but also means it’s not always so easy to connect this with the other stuff I was working on before.
Linked to the previous point: academia can be overwhelming. The work is never finished, there is always that one paper to finish, that one grant to follow up on, that one article that is still on your to-read list. There is competition, you need to publish, teach, and do admin. As deaf academics, we do all the extra emotional labor too, that is often invisible: working with sign language interpreters (it’s not just working with them!; it’s looking for the right ones, preparing them, debriefing them, etc.), educating colleagues about accessibility issues, coping with hearing fragility. Me and many of my deaf colleagues also do a lot of volunteer work to support other deaf academics and Deaf Studies & sign language researchers (for example our work for Acadeafic and Dr Deaf, …). I had a burn-out last year and I don’t want to go through that again. So I firmly set boundaries, I let people know those boundaries, I don’t feel guilty for not working overtime, I unplug now and then.
What is an example of accommodation that you either use or would like to use in your current job?
Sign language interpreters are necessary to do my job, but since I’ve only been at my institution in the Netherlands for just over a year and have to work in NGT increasingly in professional/academic contexts, I’m still finding out which NGT interpreters ‘match’ with me for which professional contexts. I’d like to work with a few designated ones but am currently in the ‘trial and error’ phase still, which is frustrating often.
I’d like to use caption services more. As deaf academics (in Europe) sign language interpreters are often the accommodation we request or are given, but watching an academic presentation in English with for example a BSL interpreter (even a very good one), is still a challenge. People tend to think that with interpreters we have ‘access’ and that’s all there is to it. But that’s actually not true. Interpreters are an accommodation we have to work with to make it work, so to say. The source is in one language, while the output is in another. You don’t have to be a language researcher to know how much can get lost in translation. When we see interpreters’ signed utterances we need to do the mental work of understanding the meaning and how it relates to the source language and the concepts the speaker is using for example. Sometimes it is just easier, and requires much less mental load, to follow the presentation in the same language and modality. And for Q&A and networking, use interpreters.
I started Acadeafic with friends/colleagues Annelies Kusters, Joseph Murray and Erin Moriarty (also deaf academics) in May 2019. Acadeafic is a deaf-curated, multi-author platform that allows Deaf Studies and sign language researchers to share their work in a bite-sized format. There is an amazing output of research on Deaf Studies and sign languages, but as a research community we want to do more to share our work with audiences within and beyond academia, on an open-access basis, and in formats that are easier do digest than full-length academic prose. All our posts are bilingual, with a vlog in any sign language the author prefers and a blog in English. Most of our posts are based on recently published articles or chapters. We also host series of posts based on special issues or edited volumes. We are keen to support junior researchers in promoting their work. We also offer a space for editorials or opinion pieces related to (doing) Deaf Studies and sign language research, for example working with sign language interpreters, navigating academia as a deaf scholar, research methodology and ethics, and access to academic discourse. All our submissions go through peer review conducted by Acadeafic and/or external reviewers, also all deaf. So if you are a Deaf Studies and/or sign language researcher and want to promote your work, get in touch!
What advice would you give your former self?
You’re not here to please everyone.
Any funny stories you want to share?
A few years ago I was at an academic conference dinner. We were at a mixed deaf/hearing table, and there was one sign language interpreter with us. I was talking with one hearing academic and when we had a brief pause, the interpreter left a bit to take a break. I left my phone in my room and I didn’t have anything else to write with to continue the conversation with him, so I gestured ‘phone’ to him in the hopes that he would take out his phone and type. Instead he took out a bit of paper and handed me his phone number. I was like ‘oh’ and he quickly realized that this wasn’t what I was asking him. It was embarrassing, but funny, and the ice was broken for the rest of the evening.
Making it as a deaf/hard of hearing (HoH) academic can often feel like a game of whack-a-mole. Between research activities, teaching duties, and that large nebulous category ‘service,’ communication challenges lurk around every corner. Some I can troubleshoot fairly quickly— i.e. arranging a classroom so there is walking space between desks and I can approach my students to better hear them (mole whacked!). Other challenges have required a few more tries, but I’ve eventually figured out viable solutions—i.e. belatedly acquiring an FM system was a game changer when it came to group discussions of papers (mole missed, mole missed, mole whacked!). But there is a situation that I have not yet been able to master, even after many, many years: the departmental faculty meeting.
I had less than a passing knowledge of that special faculty obligation that is the Departmental Faculty Meeting when I started out as an assistant professor. I’d heard some friends and my spouse—people who’d gotten faculty positions before me—mention them, usually accompanied by eye rolls. But I didn’t really have any expectations about what these meetings entailed or what my role in them might be.
Cue over to my first faculty meeting as a deaf/HoH faculty in a predominantly hearing institution. I walked into a an overly large room (overly large for the number of people we had) that looked somewhat like this:
We were 15-20 faculty seated in a classroom meant for over 40, with everybody seemingly intent in maximizing their distance from all others. After an hour of feeling like a bobblehead as I desperately twisted my neck trying to speech read my department chair in front and my colleagues in all corners of the room, I came to three conclusions:
1. Faculty (who would have thought!) are just like undergrads, and will beeline for chairs in the last rows of a room
2. Important stuff got discussed in faculty meetings (I think I caught some words that sounded like budgets and curriculum…)
3. I was dead meat, because I could not follow anything that was being said
So I went home and cried. My first year as an assistant professor, I cried after every single faculty meeting. Granted, we didn’t have that many faculty meetings back then, but enough to confirm my deep-rooted fear that I was certainly not going to survive this career path. It was clear to me in my first year that faculty meetings were whipping me soundly; if I were keeping score I would call it: Faculty Meetings 1–Ana 0.
Of course the obvious thing to do would have been to ask my department chair to change the setup of the faculty meetings. After all, my colleagues knew I was hard of hearing and relied on hearing aids for communication. But I was terrified that if my department caught whiff of how much I struggled to hear, this would sow doubts about my competence as a teacher and doom my tenure prospects. Besides, although I had a long history of self-reliance, I had zero experience in self-advocacy. Among my many thoughts were “What in the world falls under the ‘reasonable’ umbrella in reasonable accommodation?” and “oh, wait, I’m not a US citizen, does the ADA [American with Disabilities Act] even cover me?” (I still don’t know the answer to this one).
Towards the end of the academic year I found some courage to request CART (Communication Active Real Time Translation) for a final retreat-style faculty meeting. The captionists were to sit next to me and type out all discussions. My chair knew about the CART, but I (foolishly) didn’t alert the faculty. At the beginning of the meeting, a colleague expressed discomfort about the presence of unknown people in the room (the captionists). Though an explanation brought a quick apology, I felt marked. Added to the captioning time lag that at times jarred with what I could hear, I scored another loss: Faculty Meetings 2–Ana 0.
My second year brought a new department chair, a tiny increase in self-confidence, and also an increase in the frequency of faculty meetings. Aaagh! I finally resolved to approach my chair and request that faculty be seated in a round square table format during meetings so that I would have a better shot at speech reading. Simultaneously, I acquired a new FM system and a transmitter with an omnidirectional microphone — a forerunner of the one pictured here. I would place it on the center of the table and voila! OK, so it wasn’t quite 100%, and I was still missing most of the banter and jokes, but jumping from 50 to 90% comprehension (These are completely unscientific numbers. Naturally, there’s no way for me to ever tell how much I’m missing; my estimate is based on my confusion level at the end of meetings) felt wonderful. This was it! I was going to nail this faculty thing! New score: Faculty Meetings 2–Ana 1!
Then my department grew.
Okay, I get the fact that department success is gauged in part by growth. And yes, improving faculty-to-student ratios is always a good thing. But growth meant that in order to sit all of us in rectangle we were now sitting like this:
Ummm, with a gaping hole in the middle, where is microphone transmitter to go? I started putting it next to me, but of course this makes it much less likely to pick up voices from those sitting farther away. I considered going back to CART, but at this point I had had my first kid and often had to rush out of faculty meeting before the end in order to make it to daycare pickup; I couldn’t bring myself to subject others to my sometimes ad hoc schedule… so I muddled along and considered this round lost. New score: Faculty Meetings 3–Ana 1.
Fast forward a few years—the department kept growing. We were now meeting in a large room that combined my two meeting nightmares: square table arrangements with a central hole AND faculty sitting in rows (we no longer all fit around the square). Even worse… recall that faculty are just like undergrads….most actively choose to sit as far away from the center/front of the room if given an option. So much for our “round table.”
I started to cultivate the attitude recommended by some of my hearing colleagues… faculty meeting, bah, waste of time, place where people go to hear themselves talk, nothing happens there that couldn’t be solved more quickly through email….bah! OK, so attitude was my new weapon armor. By my calculations we were now at this score: Faculty Meetings 4–Ana 2. Ha! A comeback!
A few years later, further department growth and another new chair. But I told this one about my difficulties following discussions whenever we sat in rows. Alas, we were now too many faculty to sit in any sort of rectangular format that would fit in a room. I had started in a department with around 20 people and we now had more than 50! To maximize my visual contact with faculty in a room, we came up with this pretty funky rectangle with peninsula shape. Ummm… perhaps we can call this score: Faculty Meetings 4–Ana 3? We would have patented this design, but there were two problems. The perimeter of the room (around the rectangle) still had to be lined with chairs in order to have enough seating should everybody decide to show up. And see observation #1 above: faculty are just like undergrads. This means that people prefer to take the perimeter spots before they take any rectangle spots. And it turns out that people prefer to STAND IN A CORNER of the room before taking ANY of the peninsula spots in the center. New score: Faculty Meetings 5–Ana 3.
So we get to where we are today. I catch myself wondering how traitorous it is for me to dream of a smaller department while also cultivating a blasé attitude towards faculty meetings so that I release myself from feeling obligated to try and follow the discussions. In a way, this outcome is an anthesis of what a blog post on thriving in academia with deafness should be. Over a decade of trying to find a solution for a way to participate effectively in what should be a routine part of faculty life has led instead to something that resembles an arms race and I have no solution to offer. At the same time, however, this post on getting by in academia with deafness portrays pretty effectively the reality of trying to adjust to shifting communication settings as a deaf/HoH academic. I hesitate to sound as if I’m advocating “managing” as opposed to “thriving” when it comes to facing the fluctuating demands of academic life, but sometimes, while we’re whacking those moles, “managing” is what we can do.
Pandemic addendum: I wrote this post before the Covid-19 pandemic struck, never imagining the ways in which my faculty meeting odyssey would be upended yet again. The thought of meeting in-person with 40-50 colleagues now seems so distant, and new “moles” have appeared in our now virtual faculty meetings (ahem…thinking here of all those who choose to speak with their zoom cameras OFF). Yet I’ve also picked up some new management strategies in the interim… For example, Michele’s recent post points out some of the silver linings for deaf/HoH academics in working from home. And from Paige Glotzer’s profile I’ve now learned of the existence of Catchbox throwable microphones; if when life returns to normal, could this be my new faculty meeting strategy? I can’t wait to see…
The Mind Hears 