“On your faculty job application, don’t say that you have hearing loss ‘cause, you know… you function just fine.”
Enmeshed within this well-meaning advice to me years ago were layers and layers of ableism about expectations of a successful faculty member and (mis)perceptions of hearing loss and disability. At the time, my naivety about the academic hiring process and my feelings of being an imposter prevented me from offering a counter-narrative to this ableist advice. At the time, I thought:
“I function just fine. I can pass as hearing and be successful.”
Years ago, the well-intentioned job application advice fed my internalized ableism with the message that if I just worked hard enough to pass as hearing, I would be judged as equal to my hearing peers. Now I find that dance tiresome. Experience has taught me a lot about the costs associated with trying to pass as hearing. With the distance of time and the, this is what I would now say to that well-intentioned job application advice.
“You perceive me to be functioning just fine because you don’t notice me bluffing during group conversations or when there is background noise. You don’t hear my loud gasp and sigh when I can finally take off my hearing aids to free my achy ears and I no longer have to exert myself to listen. You aren’t aware of how hard I work to pronounce the sounds that I learned through years of speech therapy and the anxiety that I carry about the elocution of my voice. You don’t see the fatigue that accrues from days with many meetings. You don’t know how I carefully manage my days to allow for listening breaks and to avoid more than 3 hours of intense listening per day. “
The expectation that disabled people are only successful when they can pass as abled is one form of ableism. This thinking leads to expectations that disabled people who are successful are those who don’t need ‘special’ considerations or accommodations. These misperceptions about disability are particularly rampant within STEM (science, technology, engineering and mathematics) fields such as my own.
A study by Atchison and Libarkin (2016) analyzed the perceptions of abled scientists about disability. They asked geoscience professionals if they thought that folks with various disabilities (hearing, moderate physical, severe mobility, learning and visual ) could succeed in geoscience careers. About 75% of respondents thought that a career in geosciences was viable for deaf/HoH people. That means that 1 in 4 people on a hiring committee probably don’t think that I can do my job. Atchinson and Libarkin (2016) also asked about specific tasks. Apparently, only ~40% of the survey respondents thought that deaf/HoH faculty can teach effectively. That means that 2 out of 5 faculty hiring committee members think that I can’t teach. While these results are sobering, the findings for geoscience career viability for folks with low vision and mobility impairments were far, far worse that the perceptions for deaf/HoH folks. These ableists views about the success of disabled folks in STEM pervade how we teach students, how we judge graduate school applications and the advice that we give job seekers.
It has been several decades since I was given the advice not to disclose my hearing loss on a job application and since that time I was hired, gained tenure and promotion to full Professor. My research group, supported by federal external grants, has gotten the opportunity to investigate some really cool questions about the evolution of faults in the Earth’s crust and to collaborate with amazing researchers around the world. As a disabled person, I value the interdependence of research collaborations – we each have our strengths and fill in for each other when needed. The predominantly hearing students in my courses report enjoying those courses and appreciating my inclusive teaching style. Students engage with course material via multiple modes, and many aspects of my courses are malleable so that we can adjust to the needs of folks. By designing courses that would work better for me as a former disabled college student, I’ve developed courses that work better for a lot of other folks as well.
I function just fine as a faculty member because of (not in spite of) my disability.
Our potential for success as deaf/HoH faculty members should not be measured by our ability to pass as hearing. While this strategy might protect a few of us from the bias of gatekeepers, a more impactful path is for the perceptions of disabled deaf/HoH academics to change. By shifting general perceptions of what success looks like for disabled academics, we can start to create more diverse and inclusive learning and research communities.
References Atchison, C.L. and Libarkin, J.C., 2016. Professionally held perceptions about the accessibility of the geosciences. Geosphere, 12(4), pp.1154-1165. https://doi.org/10.1130/GES01264.1
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.
Dr. John Dennehy is a deaf virologist professor at Queens College, City University of New York. You can learn more about John and his fascinating career trajectory in this The Mind Hears profile published in July of 2021.The article below was written by John for the Sparks of Change column in the journal eLife. In it, John reflects how the pandemic changed his access to academic spaces. You can read the original article in eLife here, or scroll below for the full version.
Equity, Diversity and Inclusion: When communication all changed
-John Dennehy
On Wednesday March 11, 2020, the governor of New York announced that all in-person classes were to be suspended at my university until the end of the semester. As the news spread, my colleagues speculated that the shutdown might last a few weeks or months. To me it felt more significant, not unlike the aftermath of 9/11 when we realized that the world had irrevocably changed. As a virologist, I had some idea about what was to come; as a deaf individual, I did not fully comprehend what this would entail for me.
Ever since the COVID-19 outbreak had reached New York City in late February, I had been checking the newspapers every morning to get the latest number of cases and plot them. With the case rate doubling every 2.5 days, and vaccine production 12–18 months away at best, I knew that it was impossibly optimistic to expect normality to return within a few months. The world was going to be sheltering in place for the foreseeable future, masking, meeting remotely and social distancing. My ability to communicate with others was already tenuous. I felt as if it was about to be severed.
Born profoundly hearing impaired, I was fitted with hearing aids as a child and raised in the ‘oral world’. For many like me, hearing isn’t the problem; the problem is to make sense of the sounds. Picture yourself in a foreign country where you have only a rudimentary understanding of the language. Conversations, television programmes, what a service employee is trying to tell you… everything is incomprehensible except for a few words. If it’s quiet and you concentrate, you can partially piece things together. That’s my baseline; in hearing tests, my word recognition score is around 60%. In ideal situations, I can usually puzzle out what someone is saying by relying heavily on lipreading, context and non-verbal cues. If it’s noisy or these cues are not available, I understand nothing.
Barely a few days after the governor’s announcement, all my teaching and work meetings were taking place online. This quickly represented a challenge, as electronic or amplified speech sounds heavily distorted when re-amplified by my cochlear implant and hearing aid. Even when speakers had their webcam turned on and I could lipread, it was nearly impossible for me to understand what they were saying.
Real-time captioning, which would help solve my problems, was rarely supported by communications platforms at the time. To my dismay, I discovered that it was missing from the learning management system that my college used for teaching. Thankfully, I found an adequate substitute in Google Meet and I was able to continue communicating with my students. I had less success with some colleagues, who insisted on using their preferred platforms even though they lacked live captioning.
Online conferences and symposia were another challenge. When I alerted organizers that their software was not providing captions, most gamely tried to accommodate my needs but struggled to navigate technology issues. We once sat in an awkward, embarrassed silence for 20 minutes as the host of a Diversity, Equity, and Inclusion committee meeting attempted to find how to turn on captioning. I had been invited to talk about the challenges faced by deaf individuals; I think this real-time demonstration was possibly more effective than anything I could have planned to say. Not everybody was so cooperative, however. Some organizers did not respond to my requests or claimed that accommodations weren’t possible. One asked me to not “make life more complicated” for them — ironically, they were putting together a series of seminars about improving access to research for underrepresented minorities.
After a few of these incidents, I reached out to human resources for assistance. It took four months of persistent emailing before I was presented with a solution: I could schedule a live transcriptionist for meetings, as long as I provided notice 24 hours in advance. As it turned out, this ‘solution’ had several problems. Transcriptionists were slower and less accurate than automatic captioning, and only available during business hours. It was also a logistical challenge to get them into conferences, especially those with registration fees.
Fortunately, after a few months, most platforms started to incorporate live transcription into their software. With this, my whole world changed again. Meetings and conferences had always been difficult for me as I would struggle to locate the speaker, focus on their face, and figure out what they were saying before someone else chimed in. Online, it was easy to see everyone clearly and to follow the conversation with lipreading and captioning. With remote communication becoming mainstream, I can now participate in meetings and conferences to a greater extent than in the past.
These technological improvements don’t mean that I no longer rely on the kindness and cooperation of others. For example, I still reach out to conference organizers in advance to ensure that captioning will be provided, because it’s usually not turned on by default. Hearing loss is often an invisible disability, and hosts may not realise that attendees – including their colleagues – could have hearing difficulties. They may assume that people will request the accommodations they need, but many are embarrassed to ask or don’t want to ‘be a bother’. It’s better to provide these adjustments proactively and mindfully.
The pace of change can sometimes feel frustratingly slow, yet I often say that there has never been a better time to be deaf. The hearing aids I had as a child were primitive compared to the engineering marvels that carefully curate sounds for my ears today. When captioned media began its long, slow rollout in the 1990s, a new world opened for me, one where I could finally share my friends’ enthusiasm for the latest movies and dramas. Now the era of mainstreaming remote meetings has ushered in another sea change for me.
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
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…
Through working on The Mind Hears since Sept 2018, I’ve had the chance to meet some amazing deaf and hard-of-hearing scholars and researchers.Our backgrounds, areas of expertise, degrees of hearing, and jobs differ.But one very common experience for deaf/HoH at mainstream institutions (i.e. not at a primary deaf/HoH university), is thae lack of mentors who are deaf/HoH. This isolation drove us to start the blog. But our common experiences lead to the question: Where areall the deaf and hard-of-hearing academics?
The American Speech Language Hearing Association classifies degree of hearing loss on a scale of mild (26-40 db), moderate (41-55 db), moderately severe (56-70), severe (71-90), and profound (91+) (ASHA). Despite these straight-forward definitions, understanding the statistics on hearing loss requires nuance. While tests prove that many people have some degree of hearing loss, only a subset of these folks wear hearing aids or use signed language; even fewer request work accommodations. The National Institute on Deafness and Other Communication Disorders, part of the federal National Institutes of Health, reports that 14% of the working age adult population aged 20–69 has significant hearing loss (Hoffman et al., 2017). This 14% report a greater than 35 decibel threshold for hearing tones within speech frequencies in one or both ears (NIDCD). The number of people with high-frequency hearing loss is double the number with speech range loss (Hoffman et al., 2017). However, not hearing watch alarms or computer keyboards is not considered to be as impactful as missing speech range frequencies.
As Figure 1 shows, the statistics on hearing loss are further complicated by age, which correlates with incidence of hearing loss. Among folks aged 60–69 years, 39% have hearing loss (Hoffman et al., 2017). Within the larger disabled community, we crips joke that we are a community that can recruit new members. Joking aside, the reality is that if you are a hearing person reading this, there is a very good chance that hearing loss will affect you or someone close to you during your working lifetime. The Mind Hearscan be a valuable resource for folks with newly acquired hearing loss.
Figure 1: Modified from Hoffman et al., 2017
So where are the deaf and hard-of-hearing academics? Doctoral degrees are generally awarded to academics between the ages of 20 and 29; the incidence of significant hearing loss within this population is 2.2% (Hoffman et al., 2017). The National Science Foundation’s annual survey on doctoral recipients reports that 54,664 graduate students earned PhD degrees in 2017 (NSF 2017)—wow, that represents a lot of hard work! Great job y’all! Now, if the graduate student population resembles the general population, then we should expect that 1202 of those newly minted PhDs are deaf/HoH. Instead, the survey reports that only 654 PhDs, or 1.2%, were issued to deaf or hard of hearing people (NSF, 2017). This suggests that deaf/HoH PhDs have half the representation that they do within the general population.
Furthermore, the distribution of deaf/HoH PhDs is not even among the fields of the NSF doctoral survey. In 2017, as shown in Figure 2, each of the fields of Humanities and arts, Education, and Psychology and social sciences has a greater percentage of deaf/HoH than each of the fields of Engineering, Life sciences, Physical and earth sciences or Mathematics and computer sciences. It seems like I’ve heard of greater numbers of deaf/HoH scholars and researchers in the fields of Deaf Studies, Deaf Education and Signed Languages Studies than in other fields. This could impact the distribution. Or perhaps some fields are more friendly to deaf/HoH scholars and researchers. Nevertheless, deaf and HoH are underrepresented in all fields within scholars and researchers with PhDs.
So, what can we do? These numbers reveal why so many of us feel isolated in our experiences within academia. The Mind Hears is one effort to facilitate networking and raise awareness of inclusion issues for deaf/HoH academics.
Hoffman HJ, Dobie RA, Losonczy KG, Themann CL, Flamme GA. Declining Prevalence of Hearing Loss in US Adults Aged 20 to 69 Years. JAMA Otolaryngol Head Neck Surg. 2017;143(3):274–285. doi:10.1001/jamaoto.2016.3527
National Science Foundation, National Center for Science and Engineering Statistics. 2018. Doctorate Recipients from U.S. Universities: 2017. Special Report NSF 19-301. Alexandria, VA. Available at https://ncses.nsf.gov/pubs/nsf19301/.
You’re wearing your hearing aids, sitting at a conference presentation, feeling confident that you’re understanding what’s going on, when it happens. The audience reacts to something the speaker said, and you have no idea why. Until then, you’d thought that you were grasping enough of the presentation, but you’ve clearly missed something good. Reality check: your hearing aids might be good but you still can’t hear like a hearing person. I’ve been there. And I’ve found that when I’ve been able to get a good FM system set up at conferences, I can catch a lot more of the speaker’s remarks and subsequent discussions than when I try and go it alone with just my hearing aids. Getting FM systems to work effectively, however, can sometimes challenge even the most intrepid academic. So I thought that I would share what I’ve learned through several decades of requesting and using FM systems at conferences. I’ve occasionally used Real-Time Captioning (CART) and ASL interpreters at conferences, but someone more expert should post about those.
What is an FM system?
Frequency Modulation (FM) systems involve a paired transmitter and receiver that provide additional amplification to either a headset or, even better, directly to our hearing aids. That additional amplification can be invaluable in some difficult-to-hear situations. The audio signal is transmitted via waves within a narrow range of the FM spectrum—yup, the same as non-satellite radio. FM systems are sometimes called Assistive Listening Devices (ALDS). At conferences these systems can help by amplifying speakers’ remarks, audience questions, and ensuing discussions, as well as elevating conversations around posters above background noise.
Requesting FM systems at large conferences in the US
Because of the Americans with Disabilities Act (ADA), large conferences in the US will have a box to check on the registration page to request accommodation. If they provide an open response box, I typically write:
“I need a FM system with 60 decibels of undistorted gain. The system should have a neckloop or induction earhooks that work with the telecoil in my hearing aids. Headsets are not compatible with my hearing aids.”
Through years of bad experiences, I’ve learned to provide very specific instructions.
Headset offered at 2017 AGU
Although I provide these specifics, I am often disappointed when I arrive at the
conference center. Many conference FM systems are pretty weak and only provide only a small amount of clear amplification (maybe 15-20 dB). This might be okay for someone who has a mild hearing loss—such as some with recently acquired loss—but it pretty useless for me. At other conferences, such as at the 2017 American Geophysical Union, I’m offered a setup as in the photo at right.
Me: These are not compatible with hearing aids
Clueless but earnest conference liaison: Oh yes, they are! You just put the headset over your ears.
Me: Um no. I use behind-the-ear hearing aids and my microphones are behind my ears. This is why I specifically requested a neckloop to directly communicate with the telecoil in my hearing aids.
Clueless but earnest conference liaison: A what?
Me:
Clueless but earnest conference liaison: Oh. Well, why don’t you just take your hearing aids out and use the headset instead?
Me: Umm no. My hearing aids are tuned for my particular frequency spectrum of hearing loss. I asked for 60 decibels gain for the system to boost above what my hearing aids offer and to compensate for people speaking softly, people not speaking directly into the microphone. . . That sort of thing.
Clueless but earnest conference liaison: Huh. Well, we don’t have anything like that.
After such unfruitful conversations I usually begin sorting out my own accommodations with my personal FM system (more on that in a bit). The few times that I’ve pushed for conferences or their sites to find an neckloop or a stronger FM system, I’ve never had success. For example, at one conference, a team of six technicians met with me to tell me that there was not a single induction neckloop to be had in the entire city of New Orleans—their hands were tied. Sure.
Warning about accommodation requests:Although conferences are becoming more responsive, I’ve found that about a third of the time, my requests on the registration forms are ignored. I never hear back from the conference, and when I show up they have no idea what I’m talking about. So as part of my conference prep, I now contact them about a month before the meeting if I haven’t received notification. I also budget an extra hour or two when I first arrive at the conference to sort out the accommodations.
Paired FM systems versus direct wired rooms
With paired FM systems, one transmitter is paired to one receiver that you carry with you. The transmitter must be set up in the conference room in advance of the session and is usually patched into the sound system so that your receiver picks up signals directly from the room’s microphones. In order to set this up, large conferences need to know which sessions you will attend several weeks ahead of time. This means that you can’t pop from one session to another as our hearing peers might do at large conferences. Also, if two HoH people want to attend the same session, the room may need to have two transmitters patched into the sound system.
The 2018 AGU meeting provided headsets and telecoil loops. Progress!
Newer (or newly renovated since 2012) convention centers in the US and UK may have built-in transmitters throughout the convention hall. This means that you can take any receiver into any room and instantly get amplification without setting things up ahead of time. This flexibility is quite nice! The picture at right shows a charging rack of FM headsets and induction loops for the Washington DC Convention Center. I was really looking forward to using those at the 2018 AGU meeting, but unfortunately, all the sessions in my discipline were in the Marriott hotel next door and the system didn’t work at all there.
Small conferences and meetings outside of the US
For small conferences, as well as meetings outside of the US where the ADA is not in effect, I bring my personal FM system. At the top of this post are pictures of the FM system that I first started using around 1994 (left) and my current outdated fourteen-year-old system (middle). I can’t get this set repaired anymore, so I’m going to get a new one like the one on the right. Some benefits of personal systems over conference-provided systems is that personal systems are more powerful. My first FM system had audio boots that hooked directly to my hearing aids (left picture) which reduces signal degradation that can happen with neckloops (middle image).
At small conferences, I put my transmitter at the lectern before each session to help me catch more of the speaker’s presentation. Alas, this doesn’t help with questions and discussions, which can be a large challenge. At some conferences where microphones are used for questions and discussions, I ask the AV crew to patch my transmitter into the sound system. Right is a picture of all the different adaptors that I bring with me to ensure that my transmitter will work with the venue’s sound system. Some of these may be outdated.
While patching my transmitter into the sound system has worked very well in the past, I’ve had problems lately. Maybe sound systems have become more fussy about patching in auxiliary outputs. I am also not sure whether the newest FM systems, which use Bluetooth rather than FM signal, even have input jacks. Another hack that I came up with is to put my transmitter in front of a speaker (the photo at left is my transmitter taped to a microphone pole in front of a speaker stand at the 2018 Southern California Earthquake Center annual meeting). This hack allowed me to access the presentations and discussions that used microphones.
FM systems in poster halls
If the poster hall is crowded, you can aim the microphone of the FM system transmitter towards any speaker to elevate their voice above the background noise. This approach has worked well for me when using my own FM system. Note that the systems provided by convention centers are not mobile; it is best to bring your own to use in poster halls.
FM systems are expensive (~US$1000 – $4000), and like hearing aids, are often not covered by US health insurance. Full-time students in the US are eligible for personal FM systems through vocational rehab (degree of coverage depends on income). Many audiologists may not be aware of this (my own weren’t!), but check with the disability office at your university and they can hook you up with your state’s vocational rehab office. These FM systems are worth getting before you graduate! Some employers do purchase FM systems for their workers because they can be critical for career success; however, I’ve yet to meet an academic who has successfully negotiated an FM system from their employer (and would love to hear if you have). While insurance didn’t cover my last FM system, I was able to use a health spending account through my employer that saved me from paying taxes on the device. It is my understanding that outside of the US, personal FM systems are nearly always paid for out of pocket.
Why am I so pushy?
Since I end up using my personal FM system most of the time at large conferences, you might wonder why I keep requesting accommodations. I do so because I want the conference center to know that we are here. I want them to know that deaf/HoH academics should be considered when they are planning their meetings and ADA accommodations. If we don’t make waves, they will believe that the level of accommodation currently offered is satisfactory. I’ve heard too many stories of older academics who stop attending conferences because of declining hearing, and younger HoH academics discouraged from academic careers because of the difficulty of networking at large conferences. We owe it to ourselves and our community to be counted, advocate for flexible, effective amplification systems, and share our successful strategies.
Is my experience consistent with your own? What successful strategies have you used for FM systems at conferences?
In May I received the outstanding researcher award from the College of Natural Sciences at UMass Amherst. This was a great honor and I even got to give a 3-minute acceptance speech. While the speech starts with some of the challenges, the main point is that my deafness shapes my approach to science in ways that benefit my research. PhD student extraordinaire, Laura Fattaruso, made a video of me re-enacting the speech and here is the transcript:
Academic success was not always expected of me. I have a severe-profound high-frequency hearing loss and was language delayed in my early education. The letters on the page don’t match the sounds that I hear so it took until 2nd grade for me to figure out the basics of reading. I also had years of speech therapy to learn how to pronounce sounds that I can’t hear. Just before middle school, some visual-based aptitude tests showed I actually had some talent and I also started to do well in math. So, then teachers started expecting more of me and as you probably figured out, I caught up well enough.
Now, as a professor at a University that serves a predominantly hearing community, my broken ears are a nuisance sometimes. But this 3-minute speech is not about overcoming challenges. Instead, I want to talk about something called <signing Deaf gain>. This sign is translated into English as Deaf gain or Deaf benefit. This term coined by Gallaudet scholars describes the value that Deaf and Hard-of-Hearing people provide to the larger community because of their differences. Our ecology colleagues tell us that more diverse ecological communities can better withstand stress than homogenous communities – so too with science communities. All of our differences make CNS stronger.
Here are three examples of deaf gain in my research approach
Deaf gain1: My way of doing research is intensely visual. My students know well that I have to show 3D concepts in the air with my hands and sketch whenever we do science. I don’t believe it until I can see it. We use the figures in our papers to tell the scientific story. In this way, my research is not about elegant verbal arguments and instead focuses on connections between ideas and demonstration of geologic processes.
Deaf gain 2: Deaf are known for being blunt. My students will tell you that my reviews can sometimes be painfully blunt. For deaf scientists, being understood is never taken for granted. So, we strive for clear and direct communication of our science.
Deaf gain 3: Being deaf in a hearing world requires stamina, courage, empathy, self-advocacy, a flexible neck to lip read people in the corners of the room and a sense of humor. An added benefit is being able to accessorize using blue hearing aids with blue glitter molds that match any outfit.
I’ve been lucky to have great students and colleagues who have join up in my Deaf way of science and we’ve had a blast. Thank you.
Do you share some of these characteristics? Are there ways that deaf/HoH gain has shaped your scholarship or research?
You are at a conference with ~150 experts in your sub-discipline from all around the world. The purpose of the conference is to advance our understanding by fostering in depth group discussions after provocative talks. This is the kind of conference where careers are made through well-delivered talks and insightful contributions to the discussion. While hearing academics may relish the opportunity to participate in such a conference, for us deaf/HoH academic these conferences are obstacles to our success.
For these small conferences you are likely the only person who needs accommodation for deafness and because the conference is small they are likely not prepared to accommodate your needs. This means that you may spend a lot of time and effort figuring out accommodations that will work for you. If you have a personal FM system, you can put it at the podium, but you will miss the questions. If you sit up front to hear the speaker, you will need to turn around to speech-read the discussion contributors. If you are able to have CART (real time captioning) or interpreters, they might quickly become lost in the technical language and variety of accents at an international conference of specialists. If you bring your own sign languages interpreters who are familiar with your expertise, you can reduce this problem; but interpreter lag can impede participating in fast-paced discussions. No matter what strategies you use, let’s face it, you are working twice as hard just to understand the material as your hearing neighbor and you aren’t going to get 100% of the information.
A high stakes conference with non-ideal lecture and discussion format can be a major career challenge for deaf/HoH academics!
You want people at specialty conferences to know that you know your stuff and have good ideas. If you can’t do this by contributing to the group discussion at these high stakes conferences, can you be successful in your field? I think so and I will share some the approaches that have worked for me (full professor, moderate-profound loss, good speech reading skills).
I almost never speak up in the discussions. The high probability of me asking a question that everyone knows the answer to because they heard the issue discussed seems too risky. While I admire folks who can say “Maybe this was explained and I didn’t catch it, but (insert question)” I haven’t been able to do this at high-stakes conferences. My fear is that my colleagues will think that I wasn’t paying attention and dozed off when the topic was discussed. The truth is that even using 120% of my ‘attention’, I’m going to miss a lot of the discussion – but hearing people don’t often understand that so they may presume I was lazily dozing off.
The good news is that a lot of the networking at these conferences happens outside of the auditorium. We deaf/HoH can get our networking game going during meals, poster sessions, the food/beverage line, walking around the venue etc. Sometimes, I seek people out for research conversations with pre-planned questions to help launch the discussion. These informal settings are not without challenges (subjects of other blog posts!) but you have more control over these settings. For example, you can suggest moving a small group discussion outside of the noisy poster hall, your requests for clarification are more acceptable in small groups and you may have an opportunity to educate folks on the challenges of your deafness. While, your hearing peers will make clever comments in the formal group discussion and immediately earn the admiration of the big-shots, you can capture their attention through multiple small or one-on-one thoughtful discussions. It takes a bit longer this way, for sure. What I’ve found is that those one-on-one discussions provide rich foundation for long-standing collaborations and friendships. For me, this has been the most rewarding aspect of high-stakes conferences.
Note: This blog was drafted at a high-stakes Gordon conference on Rock Deformation during a talk that was utterly indecipherable to me. Writing this, instead of struggling with the talk, was my way of saving my energy for coffee break discussions where my game will be on. I got this!
-Michele
catch more of the speaker’s presentation. Alas, this doesn’t help with questions and discussions, which can be a large challenge. At some conferences where microphones are used for questions and discussions, I ask the AV crew to patch my transmitter into the sound system. Right is a picture of all the different adaptors that I bring with me to ensure that my transmitter will work with the venue’s sound system. Some of these may be outdated.
While patching my transmitter into the sound system has worked very well in the past, I’ve had problems lately. Maybe sound systems have become more fussy about patching in auxiliary outputs. I am also not sure whether the newest FM systems, which use Bluetooth rather than FM signal, even have input jacks. 
The Mind Hears 