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About The Mind Hears

A blog by and for deaf and hard of hearing academics

And I knew the silence of the world

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

Lyrics from Vomit Arsonist "no one can help you" sound with image of barbed wire in the background. "no one its a lonely journey where suffering in silence is the standard suffering alone suffering all I ever want is someone to ask if I'm ok but no one ever does

The Sounds of Silence

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.


— 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

Profile: Dr. John Dennehy

A white man with grey hair and a mask covering mouth and nose holds an eppendorf test tube and eyes its contents. He is wearing a dark blue shirt with a pattern and is in a laboratory type setting with white pipes in the background.
  • Current title: Professor 
  • Location: Queens College CUNY, New York 
  • Field of expertise: Virus ecology and evolution 
  • Years of experience (since start of PhD): 25 
  • Website: dennehylab.org 
  • Twitter: @DrJDennehy 

Background?

I was born deaf. At the time, my family had recently moved to rural New Hampshire. Early on, my parents struggled because I did not hit age-appropriate speech and language milestones. However, doctor after doctor told them that my hearing was fine. One even suggested that my mother seek psychiatric help. Finally, my parents took me to Mass Eye and Ear, where I came under the care of an amazing woman, Audiologist Rhoda Morrison. She properly diagnosed my hearing loss (profoundly hearing impaired), and connected me with another amazing woman, Leah Donovan, a speech therapist.  

We moved to the suburbs of Boston to be closer to Mass Eye and Ear and Ms. Donovan. I was fitted with hearing aids and rapidly became verbal. My family attributes my rapid acquisition of language to the fact that my mother and my aunt would regularly read to me. In fact, my habit of placing my ear on their throats while they read led them to believe I was unable to hear.  

By the time I was ready to go to school, there was debate as to whether I should attend Beverley School for the Deaf or mainstream at North Reading Public Schools. Encouraged by Ms. Morrison and Ms. Donovan and learning about newly implemented speech and language services at North Reading Public Schools, my parents decided to mainstream me. Despite the challenges of being deaf,  I found school easy and was often bored. I read constantly, everything I could get my hands on. My aunt likes to tell this anecdote about when I was very young. She asked me why I asked so many questions. I responded, “I want to know ebrything.” 

My school career was checkered. Depending on my interest in the subject, I would either do extremely well or barely squeak by. I did not hear much that went on in the classroom but was able to compensate by reading everything. Even in grammar school, I had my sights on advanced study after college. However, I often felt stymied and underestimated by school administrators. On the last day of 6th grade, my friends and I opened our junior high school class assignments for the following fall. Finally, we had graduated from elementary school to having classes in real subjects: life science, English, history, mathematics. Classes were assigned numbers for degree of difficulty: 0 for honors, 1 for standard and 2 for remedial. I sat in shock and shame on seeing I was assigned to level 2 classes. These assignments were not based on my grades or my standardized test scores, but rather the perception that, as a deaf student, I would not be able to compete against my peers in a junior high classroom. Skipping ahead 4 years, my guidance counselor at my highly competitive private college prep school disregarded my National Honor Society standing and told me not to bother applying to my top choice as I did not stand a chance in getting accepted. Consider instead a local state school or even a community college, he advised. Later, at Holy Cross, an academic advisor told me I should be ‘more realistic” on learning of my intention to follow the pre-med program. Medical schools would not make “exceptions” for my disability. In any event, patients would avoid a deaf doctor regardless of his qualifications. I remember these events often and have made it a point in my life to make sure that I do not belittle the aspirations of others.  

My advisor’s advice notwithstanding, I followed the pre-med track as an undergraduate. However, on being employed as a phlebotomist at a local hospital, I realized medicine was not for me. I disliked working in the hospital and found the work exceedingly stressful. Since I had been targeting medicine as a career for most of my early life, I did not really have a plan B. After a few lateral moves, I decided to pursue a career in academia.  

How did you get to where you are? 

Following my decision not to seek a medical degree, I was not sure what to do. I interned at a few companies in industry, but nothing really captured my interest. I ended up taking a job as a groundskeeper at a fancy New Hampshire resort on a lake. I had not quite finished my bachelor’s degree (all that remained was completing Physics II), but I agreed to work from May to November. That summer was quite idyllic. I enjoyed the outdoor work immensely and was quite prepared to not return to college in the fall. In my non-working hours, I evaluated different methods of estimating chipmunk population density for my college honors thesis. At some point, I found out that my boss, Carl, was the son of zoologist Hubert Frings of the University of Hawaii. Carl himself had done extensive behavioral ecology work with his father and advised me on my research project. From him, I learned more about science and academia as a potential career.  

One day at the end of August, Carl took me aside and said, “I’m afraid I am going to have to fire you.” I was stunned. I thought we were getting along well. “You shouldn’t be wasting your time here,” Carl continued, “You should be finishing up your degree. You still have time to enroll in fall courses.” So, with that, I returned to school to finish Physics II and graduated the following semester.  

As I was increasingly interested in wildlife biology, ecology, and evolution, I applied for and was accepted into the master’s program in zoology at the University of Idaho. I will not dissimulate here; my main motivation, in addition to getting a masters, was to explore the country around Idaho. I was captivated by the place names on the atlas — The Wilderness of No Return, Hell’s Canyon, Yellowstone, Snake River, Glacier National Park, Craters of the Moon — that flanked the largest wilderness area in the lower 48.  

For two years, I studied the behavioral ecology of pronghorn antelope on the National Bison Range in Montana. I loved the work and found myself very much at home in science and academia. Unfortunately, I discovered that behavioral ecology was a very challenging field to pursue. Jobs and funding were difficult to acquire, and the work was very slow making it difficult to demonstrate productivity. Some faculty in my department advised pursuing other fields of biology, perhaps with microbes. At the time I thought, “Microbes? Are they nuts?” 

My master’s studies were also noteworthy as I reached the limits of my ability to compensate for not being able to hear much of what occurred in classrooms by reading extensively. My professor in Comparative Vertebrate Reproduction would cover the very latest research, which was not written up in the standard textbook. This circumstance forced me to acknowledge my deafness to myself and realize that I could not compete with my peers without assistance. With considerable reluctance, I sought help with Student Services, and was provided with a notetaker. It worked out well in the end; my friend was paid to attend class and take notes (as she should have anyway) and I received extensive notes on the lectures.  

Following graduation from University of Idaho, I decided to pursue mosquito biology reasoning that, as disease vectors, the research would be fundable by NSF and NIH. I joined Todd Livdahl’s lab at Clark University for a PhD. The project, which included a research assistantship, was fully funded and would be close to my family in Massachusetts. I enjoyed my time in Worcester, Massachusetts and was happy with my decision to pursue an academic career. However, after a couple of years, I became somewhat disenchanted with mosquitoes; they suck (blood). To maintain mosquito populations in the laboratory, we were obliged to feed the female mosquitoes blood meals so they could lay eggs. There are several ways to do this, but the easiest and cheapest is to use graduate students. So, I offered up my arm for mosquito feeding for science on a daily basis. The only good thing I can say about this experience is that it somewhat reduced my body’s reaction to some mosquito species’ antigens. For some mosquito species, bites no longer itch.  

After a couple of years of blood-feeding mosquitoes, I decided to do my dissertation research on another topic. In a committee meeting, one of my committee members suggested that I should model my career on Richard Lenski of Michigan State University. He was one of the founders of the field of experimental evolution. For my dissertation, I decided to experimentally evolve populations of the nematode, Caenorhabditis elegans to test hypotheses regarding the evolution of sex and recombination.  

After successfully defending my dissertation, I reached out to Rich Lenski and inquired about a postdoctoral position. He let me know that he did not have any opportunities available, but that his former doctoral student, Paul Turner of Yale University, was looking for a postdoc. Working with Paul, I was able to acquire an NSF Postdoctoral Fellowship and took up the study of the bacteriophages of Pseudomonas syringae. Yes, microbes. The very same organisms I shunned as uninteresting just a few years prior.  

In Paul’s lab, I fell in love with phages and decided it would be my scientific focus in my own lab someday. After three years in Paul’s lab, Ing-Nang Wang invited me to join his lab at University at Albany to work with Escherichia coli phages. Here I learned about genetically modifying phages and started a long-term project on stochastic gene expression that I continue today.  

In 2007, I was hired as an assistant professor at Queens College and rose through the ranks to my present position as full professor. My two biggest accomplishments are having a continuously funded laboratory over the past 14 years and having mentored dozens of students from a wide variety of backgrounds in research. I still study the viruses of bacteria as well as other viruses such as rotavirus and SARS-CoV-2.  

What is your biggest professional challenge? How do you mitigate this challenge? 

My biggest professional challenge is hearing in difficult situations, such as in noisy environments or in rooms with poor acoustics. This manifests itself at events such as scientific conferences and while teaching. I have great difficulty hearing amplified talks, questions from students during classes that I teach, and people speaking during noisy conference dinners or poster sessions. This difficulty makes it very challenging to network with other scientists or keep up with advancements in my professional field. Social media, especially Twitter, have helped mitigate this challenge somewhat. In addition, the COVID19 pandemic has led to a transition to video conferencing, which, when coupled with live transcription, make it much easier to understand my colleagues when they speak.  

One of my great failings has been not asking for accommodation when needed. Asking for help goes against my very strong impulse towards independence and my desire not to inconvenience others. The COVID19 pandemic has inspired me to advocate for myself much more than I formerly did because without accommodation (i.e., live transcription), I would not be able to participate in my work. I am resolved to request assistance when needed in the future, which may come in the form of interpretation at conferences and other events and in the classroom.  

What advice would you give your former self? 

Two things: 1. Trust your instincts, and 2. What do you care what other people think? 

Three reasons why I chose industry research over academia

A picture of a set of tall office buildings viewed from the ground up next to a picture of a classic university building with ivy climbing the walls. The title of the blog post (Three reasons why I chose industry research over academia) is superimposed on both pictures.

-Alex Lu

After a long five years, my stint as a PhD student was finally reaching its end – and that meant I needed to hit the job market. As someone who was graduating from the Department of Computer Science at the University of Toronto with a specialization in computational biology, I had some uncertainty about what kinds of positions I should be applying for. I was at the intersection of two fields with drastically different career trajectories. In the life sciences you are typically expected to spend a few years as a postdoc, but in computer science it’s not uncommon to apply for faculty positions right out of the PhD. I did know that I wanted to stay in academia, so I decided to apply to assistant professor postings first to see if I could successfully convince search committees that I was really more of a computer scientist, and then I’d fall back on postdocs if my search was unsuccessful. What I didn’t know was how much my preferences would evolve through the job search: despite being offered a Canada Research Chair position that would have come with up to a million dollars in federal funding, I ended up choosing an industry research position at Microsoft Research (MSR). What influenced my decision to choose industry over academia?

When I first entered the job market, I had three main ideas about academia that made me believe it was the only option for me. First, I thought it was more accessible. Universities are usually progressive, and each has their own accessibility or disability services department. Even though accessibility legislation exists, I always thought that the expense of hiring interpreters would clash against corporate goals of profit, so I assumed that companies would try to scrape by with the bare minimum of accommodations. Second, I thought it was the only place where I could pursue an independent research agenda. I do a lot of basic research, and I strongly believe that scientific research should be used to enrich everyone’s lives and be accessible to everyone, not held as secrets in a private company. Third, I thought it was the best opportunity for mentorship. In academia, you are required to mentor students. As someone from an underrepresented background on multiple axes, I wanted to make sure that other underrepresented people had the same opportunity to benefit from the academic system as I did. 

So naturally, the majority of my applications went out to universities. I sent out a total of 32 applications to research-intensive institutions globally. I made one exception — I sent out an application to MSR as the sole industry position I applied for. The only reason I sent out the MSR application was because a colleague had transitioned to a position there, and he sent me a Twitter DM inviting me to apply. I was initially resistant, but he reassured me that the application would be no additional work; to apply I just needed to submit the same research statement and CV that I was sending off to academia. I figured I had nothing to lose by applying, and sending off my application took less than thirty minutes on their online portal. 

A few months after I sent out my applications, I starting hearing back from departments. Being a fresh PhD graduate with no postdoctoral training, and with the pandemic causing hiring freezes, I was pessimistic about my prospects — so I was surprised to learn that I had scored several interviews at institutions in the United States, Canada, and Europe. What surprised me was that at the majority of institutions I was interviewed by life sciences departments, while the computer science departments mostly turned me down. I was expecting the opposite given the standards for postdocs in both fields, but it turned out that many life sciences departments were excited about interdisciplinary research and aware of field-specific nuances in training. The majority of institutions where I interviewed were incredibly warm and inclusive, and excellent on access: one consulted with their access department ahead of time and offered me 1.5x the time on the screening interview to account for interpretation delays; another institution’s search committee greeted me in sign language. I think my positive experience may have been influenced by me explicitly identifying as Deaf and queer in my research statements; some institutions may have self-selected out at that point, leaving me with only the progressive departments. 

My interview at MSR came later than most of my interviews in academia, so they had to beat a pretty strong impression as well as my natural resistance to the idea of industry research. So how did they do it? What I found is that MSR systematically challenged each of the misconceptions that I had about academic versus industry research. In doing so, they exposed faults in the academic system. While I was aware of these faults, I always considered them nuisances that I had to accept to join an otherwise principled system. MSR offered some better alternatives, and made me realize that these were things I did not actually have to put up with.

First, on the accessibility front, I was taken back to learn that Microsoft had their own in-house ASL coordination team. During my academic job interviews, I was mostly interviewing at departments that while open-minded, had never employed a Deaf faculty member previously. I expected this would be the case; Deaf STEM PhDs are still rare due to the sheer amount of systematic barriers, so I naturally accepted that I would need to do a lot of explaining and legwork on my needs. I had already devised a strategy to minimize the impact of this inexperience on me: I told each of the departments that they should enlist my current academic interpreters at my PhD institution, so I would not be penalized as departments scrambled to find potentially less-experienced interpreters without being aware of the pitfalls. In contrast, the ASL coordination team at MSR directly reached out directly to me. They were totally on board with my plan, but they also made me aware of their own services. They told me that they provided ASL interpretation for about 40 Deaf employees globally, so they already had a system in place for coordinating interpreters. In fact, their in-house ASL coordinator was actually Deaf herself, and was a certified DI — I had an opportunity to chat with her, and we discussed her plans for building a community for Deaf and hard of hearing people at the company. 

This was the first thing I realized MSR could do better than most academic departments: they were able to bring institutional knowledge on accessibility. I’ve always considered myself fortunate, because as a Deaf person, I’ve rarely had to “fight” for my needs — I’ve mostly worked with accessibility departments and academics who were open-minded and interested in accommodating me. But even when working with institutions that are willing, I still have to allocate a proportion of my energy to explaining who I am and what I need to those who have never worked with Deaf people before. I had always considered that energy tax to be inevitable. Microsoft challenged that belief. While I still have to do some explaining — for example, I’m the first Deaf person they’ve hired in a research role (as opposed to sales or engineering etc.), so there are still specific nuances that come with that — for the first time, I could consider what else I could do with the energy that I would normally expend on defending my existence. 

Second, on the research front, I learned that MSR gave full research autonomy to their researchers. Prior to interviewing at MSR, I mostly knew about industry through informational interviews with start-ups and smaller biotech companies. I was not impressed; in addition to keeping my research scope constrained on what would be immediately beneficial to the company, I would not have the opportunity to publish and disseminate my research to the public. What my interview at MSR taught me was that industry research actually occupies a wider spectrum than that. The researchers there explained to me the structure of the company: while Microsoft itself has its own research team that does work on more product-orientated research, MSR is considered an independent entity. While it receives funding from the parent company, the researchers pursue their own research agenda, publish almost all of their research publicly, and maintain active ties with academic institutions. Finally, I was also very excited about how the research group was set up: unlike a traditional academic department, which is stratified by discipline, MSR is highly interdisciplinary, and you see social scientists, mathematicians, biologists, etc. on the same floor every day, instead of being hosted in a different buildings across campus. As a highly interdisciplinary researcher, I was excited about just how much my research would branch out in an environment where I was in constant contact with people of different research backgrounds than me.

Essentially, my new position looks similar to an assistant professor position, with some key differences: the biggest is that there is no grant-writing or mandated teaching involved. There is also no tenure involved. For me, all of these things were appealing. I had always viewed the grant-writing side of academia as a necessary evil to keep the research churning, and the prospect of just not having to write grants was mind-bogglingly exciting. While I enjoy teaching, I enjoy it with highly-motivated students who are there to learn, and I don’t like the administration aspects of more routine courses where many students are just there to check off a requirement on a degree. As for tenure — while the end-prospect was exciting, I was concerned about how the demands of the tenure track might change my values and research philosophy. One of the things I expressed while interviewing with academic departments was that I didn’t want to sign up for a school where publication requirements for tenure were too demanding. I felt that stress of churning out papers might trickle down to my students, and I wanted to be someone who would hold space for my students to learn and explore their own interests instead of expecting them to be productive to bolster my own portfolio. 

Third, I realized that there is still so much mentoring that can be done outside of formal academic structures. One of the disadvantages of the MSR position for me was that I would not be able to build a lab and mentor students through a graduate degree. I initially considered this a serious demerit that would clash with my goals of fostering underrepresented students through the academic system. However, the other benefits of the MSR job made me think about alternative ways I could achieve this goal. I realized that the autonomy baked into the job would still give me a lot of opportunity to do good. For example, each researcher at MSR has the opportunity to hire an intern from a graduate program every year, and I consider this a way to give students opportunities and expose them to new research interests; I plan to keep the scope of my hiring wide and will be looking at outreach from institutions that serve underrepresented students, like HBCUs. Similarly, a lot of MSR researchers take on voluntary academic supervision or service appointments: some serve as diversity chairs for conferences, and many sit on PhD committees. I’m already discussing co-supervising some postdocs, and opportunities for more machine learning education at Gallaudet. I would say that not limiting my mentorship options to the boxes that academia provides for me may foster more creativity, and I’m looking forward to how I carry this out in the future. 

Overall, my interview at MSR left a major impact on me. And this meant I had a very difficult decision to make: my offer at MSR came at the same time as an offer from a major Canadian university. I remember sitting at my desk with both offers side-by-side, and thinking how my offer from academia was everything I had ever wanted. Even when I was a child, my parents had always encouraged me to go into higher education, because they said that with my disability, public institutions would be willing to accommodate me but not private companies. In some respects, I had been groomed into viewing academia as the place for me, and I also feel like this story is true for many other disabled people. I think this is a motivating factor behind much of the activism around accessibility in higher education, because there is a dissonance between the way we are trained to see academia as a sanctuary, and the way it actually is in practice. But in the end, my industry offer won out. It promised a brighter future, without many of the things that I had settled for as a matter of “this is just the way things are” in academia. While we will see if those promises bear fruit, for me, the risk is worth it.





A white male with dark hair and a half smile in front of a shop. He is wearing a lilac colored shirt and a jean jacket.

By day, Alex Lu is a computational biologist whose research focuses on artificial intelligence that can “teach themselves” biology in large-scale microscopy datasets through puzzle-solving and interaction. He holds a PhD in Computer Science from the University of Toronto, and will be starting as a Senior Researcher at Microsoft Research in September. By night, he is a Deaf-queer community organizer. He previously served as a board director for the BC Rainbow Alliance of the Deaf, the frank theatre company, and OPIRG-Toronto. His work as a journalist focuses on the intersection between disability, queer, and racial communities.

Hearing and understanding are not the same

– Sarah Sparks

Hearing and understanding are not the same. Hearing sound is not just about the ear. AN image of a white woman with black pulled back hair holds a hand behind her ear.

Deaf and hard of hearing professionals who use hearing technologies sometimes find ourselves in challenging situations. Whether at conferences, in daily work environments, or in other professional settings, we encounter frequent misunderstandings about our hearing abilities. At times, hearing colleagues mistakenly believe that we understand everything that is said so long as we have heard it. We might need to advocate extra strongly for ourselves when a conference organizer declines to provide American Sign Language interpreters, CART services, FM systems or other accommodations because we have access to sound. Colleagues who see us every day might assume that we have access to information when we do not: that we understood an oral exchange simply because we heard it.

The following is repost from Sarah’s blog and you can see Sarah sign her blog in ASL at this link.


Family members of deaf and hard of hearing (DHH) people sometimes ask me questions like this one: “My deaf child seemed not to hear when I asked if she finished her math homework, but she understood when I said, ‘Dinner is ready!’ Why did she hear one but not the other?”

Like many DHH people, I have experienced hearing without understanding. As an audiologist and cochlear implant user, I know to expect this from myself. But awkward situations do occur sometimes. I might find out that a neighbor spoke to me in the hallway and now believes that I’m rude because I didn’t answer. Or a friend thinks that I don’t care about their problem because they mentioned it while I wasn’t looking and I didn’t catch all of what was said. Or a family member is confused because I understood, “What movie do you want to watch?” but missed, “Could you do the laundry tonight?”

Explaining, “I heard it, but I didn’t understand it,” can be a challenge. Most people, including our hearing friends and families, have never had to think about the differences between hearing and understanding. What are those differences, anyway? To answer that question, we need to consider the following:

Hearing devices do not provide “normal” hearing. Hearing aids, cochlear implants, and other devices are great technologies. Many DHH people use them for access to sound, but they do not provide “normal” hearing. DHH people have more access to sound with hearing devices than we have without them, but these technologies do not work like eyeglasses that correct to 20/20 vision.

Hearing is not just about the ear. We hear with our brains, not just our ears. Hearing aids and cochlear implants do not repair damage to the tiny nerve cells in the inner ear, the bones in the middle ear, and other parts of the ear’s anatomy that may be affected. Because of this, DHH people who listen through hearing devices do not necessarily receive the same sound input to the brain as hearing people.

Hearing that sound is happening is not the same as processing sound. Determining where a sound is, how far away it is, what kind of sound it is, and whether it is different from other sounds: all of these are possible because of auditory processing in the brain. When a hearing person is listening, they have access to subtle auditory cues. These are variations in sounds that we need for differentiating one sound from another. They play an important role in auditory processing. Even with hearing devices, most DHH people will miss some of these cues. In some situations, these cues are missing for hearing people too. Have you ever struggled to understand someone speaking through a megaphone, intercom system, or out-of-tune radio? Hearing a spoken message does not necessarily mean that all of its information was accessible.

What might happen if a DHH person heard the message, but some of the information in it was not accessible? A few examples:

  • Misunderstanding words and sentences: the DHH person heard, “The samurai” instead of “The sand is dry.”
  • Misunderstanding the tone of the message: the speaker was excited, but the DHH person heard their tone of voice as angry.
  • Difficulty hearing in background noise: the speaker’s voice seemed distorted by the noises in a restaurant or at a party, and the DHH person did not hear the words clearly.
  • Perceiving a sound as far away when it is nearby: the speaker was near the DHH person in the hallway, but the sound of their voice seemed farther away. The DHH person did not know that the speaker wanted their attention.
  • Perceiving two similar but different sounds as the same: the DHH person consistently hears /m/ and /n/ as the same, so words like “moo” and “new” also sound the same.

Listening for understanding requires cognitive effort. Auditory processing isn’t the only thing that the brain does with sound. Language processing is a whole other topic for another day (and spoken language is not the only kind of language!). For now: making sense of sounds and understanding their meanings within a spoken language requires effort and energy from our brains. That effort is greater for DHH people who use hearing devices because the auditory input that we receive is not the same as hearing people receive. Noise in the background means that even more cognitive effort is required for listening. When a person has to use more cognitive resources to listen, their ability to comprehend and remember auditory information decreases.

Think of it like the gas tank in a car: when the road is clear and you’re driving at a steady speed with no delays, you will use less gasoline than you would when driving the same distance in a rush hour traffic jam. For most hearing people, daily listening involves clear roads and steady speeds with a few pockets of occasional traffic. The day ends, and a new day begins with a full tank of gas. But for DHH people, there are fewer clear roads. The day is full of traffic jams and roadblocks like background noise, lack of access to visual cues, and complex listening situations where auditory information is missed. The day ends, but our gas tanks never get refilled completely. Our hearing coworkers and classmates might be ready for a nap by the end of a long day while we were exhausted and in need of a listening break (and maybe a nap too!) by noon.

Why did the DHH person in your life hear what you said just now but didn’t seem to hear you five minutes ago? Maybe they heard you talking five minutes ago but didn’t know that you were talking to them. Maybe because they thought you were talking to someone else, they opted to save some of their listening energy for later. Maybe they heard what you said five minutes ago but another sound was happening at the same time and their brain prioritized that sound instead. Maybe the speech sounds of what you said five minutes ago were more challenging to understand than the speech sounds of what you said just now. Maybe the DHH person is exhausted from a long day of nonstop auditory input, and what you said five minutes ago required more listening effort than what you said just now. Or maybe you spoke more softly five minutes ago and they didn’t hear you at all. There are many possible reasons that a DHH person might not have understood a spoken message.


A smiling, young white woman with glasses wears her dark hair back to show her cochlear implant.

Dr. Sparks holds a clinical Doctorate in Audiology (Au.D.) from Gallaudet University. She is the founder of Audiology Outside the Box, an audiologic counseling and aural (re)habilitation-focused telepractice. She also works part time at another clinic, providing cochlear implant, hearing aid, and diagnostic testing services. Currently, she is studying at Gallaudet for a Ph.D. in Hearing, Speech, and Language Sciences. Her clinical and research interests include pediatrics, vestibular assessment and rehabilitation, cochlear implants, the audiologist’s role in counseling and self-advocacy skill development, and audiology services provided in American Sign Language. Her Ph.D. dissertation research will focus on vestibular dysfunction and its impact on deaf/HoH children.

6 Ways to Dismantle Barriers for Disabled Faculty on Campus

-Stephanie Cawthon

This is a repost from Dr. Stephanie Cawthon’s blog, where she explores topics such as educational access, equity, attainment and deafness. ‘6 Ways to Dismantle Barriers for Disabled Faculty on Campus was originally posted on April 8, 2021, along with a downloadable infographic.

Infographic summarizing the 6 activities listed in the main text that can dismantle barriers for disabled faculty. Each action is presented in a different color with pared down representative drawings.

As higher education strives to be more inclusive and open to all, historical barriers are being dismantled. Yet these efforts often overlook a key group: disabled faculty. 

Faculty are an essential part of any campus. Expectations for their work are high — develop and teach courses, advise and mentor students, and serve their institutions and fields of study. Doing this well provides a critical foundation for students to prosper and grow, but it is a demanding, dynamic, and complex juggling act — especially if you factor in disabilities that are frequently unconsidered, unacknowledged, and unaccommodated. 

I have participated in committees that discuss campus accessibility, often as the only disabled faculty member. There’s a lot of work to be done. Here are six ways to get started and support disabled faculty on your campus.

Assume faculty do not disclose their disabilities

Many students do not disclose their disabilities when they arrive at college and neither do most faculty, attempting to avoid the persistent negative stigmas against people with disabilities. Faculty who face high stakes decisions for tenure and promotion have even less incentive to disclose. 

Disability is also variable and needs may change. Some physical and mental health conditions are sudden, while some are progressive and may change over time.

Recognize ableism exists on your campus (and work to eliminate it)

Disabled people face discrimination and oppression both in their professional lives and in society as a whole. Ableism — or attitudes and behavior that people without disabilities are more valued than those with disabilities — is embedded in our systems and in the design of our workforces, including academic institutions.

Disabled faculty experience marginalization and microaggressions on a daily basis on campus, including:

  • barriers in physical buildings and online classrooms.
  • lack of access at all university activities.
  • exclusion from disability accommodations and outreach.
  • negative assumptions about their contributions to academic life.

Even simple faculty meetings can be challenging and overwhelming for a disabled faculty member to navigate, especially if they are newly hired. 

Include disability in campus diversity efforts

Diversity and equity is at the center of efforts to reduce gaps in opportunity afforded to white, male faculty from high socioeconomic and elite backgrounds. Campus-wide initiatives are on the rise across the nation in an effort to respond to these systemic and historical inequities.

But disabled faculty are often not included in policy or practices geared to increasing diversity. Check the diversity mission statements at your institution. Is disability recognized as a part of campus diversity? Are disabled faculty represented in decision-making about improvements to campus and its climate?

Make it easy to request accommodations and encourage flexible work options

Disabled faculty often face significant institutional and attitude barriers when they disclose their disability and access needs. First and foremost, have a clear and centralized process to make accommodations requests (and have them paid for, so there is no budgetary haggling). This can also reduce the hassle and stress of advocating for access.

Also consider making flexible work options available to all faculty, reducing the need to make special requests based on disability status. As we have learned during the pandemic, flexibility and options that were never before accepted as part of regular workspace interactions are now what we use for everyone.

Ensure all aspects of their job are accessible

Faculty members have many roles within the campus community: teacher, advisor, researcher, committee member, supervisor, advocate. 

When thinking about accommodations, institutions often focus only on what is needed for formal instruction or when the faculty member is in class with students. Institutions instead must think holistically about accessibility — how to provide equal access to all of the social, cultural, and interpersonal aspects of campus life. At your college:

  • How do disabled faculty engage with students during office hours or colleagues during meetings? 
  • Are there captions on videos displayed around campus?
  • Are accessibility supports available for guest lectures and events? 
  • Can faculty members be included via video platforms if physically coming to campus isn’t possible? 

Lead with intention

A culture of access must come from the top. And it must come quickly. Each experience of ableism and inaccessibility is cumulative, resulting in a significant psychological and emotional toll. Disabled faculty are often tired and demoralized, and feel unwelcome in academia. This chronic marginalization can become itself a barrier, above and beyond the policies and behaviors of the institution.

Profile: Dr. Stephanie W. Cawthon

A smiling white woman with straight, shoulder length brown hair. She is wearing a pink top and dark blazer, and a delicate chain around her neck.
  • Current title: Professor 
  • Location: The University of Texas at Austin, USA 
  • Field(s) of expertise: Education and Disability Equity
  • Years of experience in academia (since start of PhD): 24 years
  • Website: stephaniecawthon.com       
  • Twitter: @swcawthon

Where did you go to school?

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.

Profile: Dr. Hilde Haualand

A smiling white woman with blue eyes and graying hair cut in a curly bob. She wears a light blue shirt, and delicate gold chains around her neck.
  • Current title: Professor
  • Location: Oslo, Norway
  • Field of expertise: Sign language, deaf studies, sign language interpreting
  • Years of experience in academia: Contract researcher since 2001, PhD completed 2012.
  • Twitter: @hildemh

Background?

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).  

Eloquence is Overrated…and Exhausting

white woman with dark shoulder length hair

–Hi there. I’m Sara, and I’m almost deaf. 

As folks with hearing loss, we have been trained to speak clearly so that we mask our deafness and can be accepted to be as capable as the hearing. While people associate academic brilliance and intelligence with eloquent elocution, we know that this correlation isn’t true. Linguistic bias exists.   

The recent social narrative surrounding President Biden’s stuttering reminds me of The King’s Speech in which Colin Firth plays a tortured King George VI dealing with the emotional rollercoaster only a profound stutter and pressure of public speaking could bring. To me, speaking eloquently seemed like an impossible request. Of course, Firth does so in a crescendo-like, climactic, Oscar-winning performance that had me rolling my eyes. But it also made me all warm and fuzzy inside. I do understand the rewards of accomplishing the task, but is it all worth the physical, mental, and emotional stress?

Is eloquence overrated? 

Literacy abilities are equated with intelligence: both what kinds of literacies we have and the expressions of those literacies. This is problematic. For example, Standardized White English is reinforced as the societal norm in classrooms, the media, on exams, in cultural narratives; consequently the “good” English speaker is centered in the academic sphere – the person who is articulate, eloquent, and has native or near-native English fluency – marginalizing a vast swath of experiences.

Below are reflections from two deaf The Mind Hears readers that capture the emotional and mental tension of performative eloquence. Their experiences also honor, in a small way, the progress we can make towards a broader and more inclusive definition of what it means to be articulate.  

Sara Halpern

The Ohio State University, Modern Jewish & European History

 

Hello, I’m Sara – without an H, thanks — and I was born profoundly deaf in 1985. I learned language through lipreading for the first four years of my life. I still missed out a lot because I was not overhearing conversations or listening to Sesame Street (I liked Mr. Rogers better; at least I could read his lips). Once I was implanted in 1989, there was a period of intense audio therapy before I started kindergarten. Then I continued with speech therapy until I graduated from high school in 2004. While those therapies are no longer part of routine, my mishandling of the spoken and written English language haunted me throughout college and early years of graduate school. 

Like Sara, I internalized that the notion of articulateness, including a strong grasp of my native language, signified intellectual intelligence. I received this messaging when I had to take all those standardized exams, including from the Department of Education and College Board (including AP and GRE), where the rubrics were clear. Phrases such as “well written” and “sophisticated thinking” confounded me. I knew I was smart; I read well above my grade level but somehow I could not spout the “right” words or formulate sentences that could make sense to others.

My own speech pattern further hampered my ability to deliver the way people like the Obamas or George Clooney could. I hated public speaking of any sorts because they were always graded on my ability to speak clearly, pronounce every word correctly, and slow down. Coming from a family of New Yorkers with their rapid fire conversations, it hurt me that I was not allowed to blend in my own family either. Where was I supposed to fit in within the educated, middle-class American ideal of “articulateness” and get an A+ in that?

All that changed when I went abroad to study German and Hebrew and research in various countries where English was not the native language or where English accents were different from my own (Australia and the UK in this case). I found that no one cared how I spoke so as long as I was understandable, which meant slowing down and pronouncing words clearly as they were doing. Since I was doing the same in German and Hebrew, this practice eventually influenced how I spoke English. Every time I returned to the United States, I carried this practice with me and native English speakers responded more positively than before. (Still, every now and then, I get asked if I’m from Germany…) 

After these experiences, I have more or less given up striving to fit ideal standards as imagined by bureaucrats in the Department of Education and the College Board, because we are living in a globalized world where English is the most widely used language, spoken in diverse manners. We are all intelligent but in our own unique ways.

Young white woman sites with a canyon behind her. She wears a baseball hat and glasses. The wooden  sign next to her says "Ooh Aah Point".

Alma C. Schrage

University of Illinois Champaign-Urbana, Natural Resources and Environmental Science

I feel like deaf/HoH folks get socialized early to fit in, to pass, because often the reaction if we say “what?” is being treated as if we are not intelligent…which is kind of a double bind because we can get stuck in situations where we have no idea what is going on and get caught in it.

When I started high school, I joined Model UN because a friend was in it and I wanted to prove I could do it. I had to rely on my partner to relay what everyone was saying. There wasn’t a whole lot of time to communicate, so often she would say “Talk about this issue and why it’s bad because –” That worked fine because I was comfortable ad libbing, and it actually went really well — we got an honorable mention, which was kind of amazing with it being our first conference. But at the same time the award felt kind of empty — it felt like I was just a mouthpiece and not making any of the decisions or critical thinking because I wasn’t receiving the information I needed to do so. I had a mind and was looking for conversation and reciprocity, not empty, performative acts of speaking so the experience was frustrating. I quit after that first conference. Ironically my hearing friend and debate partner was really angry about me quitting – the fact that it was inaccessible didn’t really seem to register with them.

The isolation and lack of access that I experienced as child and teenager because of my good speech is part of what pushed me towards learning American Sign Language (ASL) as an adult: It supported the conversation and connection that I craved, both with signing deaf communities and deaf mentors, but also with the hearing communities I interact with through my advocacy, my work, and going about my daily life. If you sign, people immediately get it — Oh, she’s deaf — and they are more willing to do things like write stuff down or use gestures for basic communication.  I’ve found that as an English and ASL user it has been easier to get hearing academics to think more concretely about accessibility and inclusion, which is desperately lacking in academia. Signing has also made me a better self-advocate when I do speak; my experiences with signing Deaf mentors has pushed me to be more assertive and less patient with hearing attitudes and behaviors that are inaccessible or blatantly discriminatory.

Because of the intersections of my privilege — being a white academic — and my particular deaf experience – having reading as my primary access point to language and learning, plus clear speech – I’ve largely been able to dodge people’s prejudices about speaking “good English” and intelligence. The flipside of that coin has been how it renders my deafness invisible. My speech has often fooled hearing people into thinking I understand more than I do; how could a person profoundly deaf speak so well?

A Way Forward

As we wrote this together and I read about Sara and Alma, one theme became clear: spaces such as The Mind Hears where we can converse are small but integral to understanding the deaf experience beyond ourselves. Adapting to adaptations while being unexpectedly advantageous or savvy feels ironic, but listening, really listening to others’ narratives can offer new ideas for advocacy.   


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.

Smiling white man sits at a table with a model of the human ear in front of him. He wears black sweater and behind him are shuttered windows. The text on the right reads " Cochlear implants are not my thing... yet" On the left "the Eagle Ear Blog' is written below The Mind Hears logo.

Cochlear implants are not my thing… yet

— Henry

This is a repost from Dr. Henry Adler’s blog, The Eagle Ear, where he chronicles his career and deafness. ‘Cochlear implants are not my thing… yet‘ was originally posted at The Eagle Ear on November 29, 2020.

I was a graduate student at Dr. James Saunders’ laboratory at the University of Pennsylvania in the late 1980s and early 1990s.  At that time, the laboratory focused on both the structural and functional aspects of hearing loss and recovery in chickens.  The laboratory had other research interests such as the structural aspects of middle ear bone development in small mammals, but that’s beside the point.

I was the first deaf graduate student at UPenn’s own Biomedical Graduate Group – I entered there with an undeclared major in the fall of 1989.  My initial plan was to major in pathology but I eventually got my doctorate in Neuroscience. That’s been already explained in an earlier blog (Why I chose Neuroscience over Marine Biology – August 17, 2020).

It was an unusual time for me and anyone involved in inner ear research for different reasons.

As for me, I was probably one of very few scientists with a congenital hearing loss, perhaps the first deaf scientist who attended any meeting of the Association for Research in Otolaryngology (ARO).  Yes, there had been a few others with hearing loss who had attended such a meeting, but none of them was born with a hearing loss or had hearing loss at an early age.

As for other ARO members, well, many, if not all, of them had originally focused on helping ameliorate the effects of hearing loss on everyday life.  Such focus had involved learning how to treat or even cure hearing loss.  When they either met or heard about me, they’d say, “Whoa!”  They must’ve been struck by the possibility that maybe a deaf individual might want not only to learn about the functional and structural aspects of hearing loss in all animals including human beings but also to consider treatment for his own hearing loss so that he could fit better into the Hearing Research community.

Well, as I described in an early blog (‘You have a bad attitude’ – August 17, 2022), the answer is no.

For several years when I was at Jim’s laboratory, I had worked with him, fellow graduate students, medical students doing rotations, residents in otolaryngology and other visiting scientists.  Some, if not all, had tried to pressure me into having a cochlear implant, either seriously or in a fun way.  I always brushed them off.

Nearing the end of my graduate studies, I was working on my Ph.D. dissertation.  Naturally, I was under immense pressure to finish it off before my dissertation defense, but I also was able to relax a bit when I could take a few moments to do so.  One of them took place at the laboratory when I believe we all had a lunch break, maybe for a pizza or dessert break.  Jim and all his graduate students were chatting back and forth, and of course I couldn’t grasp all of what they were talking about.  Somehow, Jim commented something about cochlear implants, and I finally blew up on him.  Jim realized how serious I was about not having a cochlear implant, even though the point he was making was not about my decision not to have a cochlear implant but was made in general.  But at that time, I thought he was talking about me.  Hence the loss of my temper.

A few weeks later when it was time to orally present and defend my dissertation, my parents and my fiancée Denise came to watch me.  I was nervous as hell – I was rather confident with my approach to present my work but had little, if any, preparation to answer audience questions for several reasons.  

One reason is I didn’t participate much in group discussions about hearing research in general – participants would talk back and forth, and sign language interpreters would try to capture what they were discussing.  Unfortunately they weren’t always successful because they themselves weren’t scientifically proficient.  Another reason is that Jim and/or my fellow graduate students either didn’t have time and/or didn’t know how to prepare me for any question-and-answer sessions.  Even though one of my fellow graduate students had deaf parents, he himself was a very quiet individual. Most of the time, no sign language interpreters or any other accommodations were available at the laboratory.  So, it was OK for me to sit back and let them talk without my having to participate.  No wonder that at least one of my fellow graduate students had felt (and even expressed) that I had been a lazy student.

Let’s go back to my lack of cochlear implantation during my graduate studies.  When I barely passed my dissertation defense (I thought I didn’t pass it, but I wasn’t the only graduate student who had felt that way), we had a lab party.  During the party, Jim had told my parents that I would not be a good candidate for cochlear implantation. He might have based his conclusion on his interactions with me, including my blow-up a few weeks back then.

Several days, months or years later (I don’t remember exactly when), my parents told me about Jim’s mention of my not being a good candidate for cochlear implantation.  At first, I said OK.  Later on, when my parents read my blog (that is, You have a bad attitude), they reminded me of Jim’s assessment of my candidacy.   

Now, only after I had kept (and still keep) hearing from my peers with hearing loss who now wear cochlear implants and are doing well, career-wise, as well as had seen how well my wife Denise is doing with her own cochlear implant, I realize that the lack of candidacy was based on my attitude on cochlear implantation.  It’s not because I’m against cochlear implantation, but because comments from people with whom I’m friendly or in a close relationship have stiffened my resistance against having my own cochlear implant.  Plus, I just have had too many things on my mind, and I don’t want cochlear implants, followed by therapy, to take time away from things I want or need to do.


Biography of Henry J. Adler: I am a Research Assistant Professor at the Center for Hearing and Deafness at the University at Buffalo.  I do research on several fields of Hearing Science — they include (but are not limited to) hearing loss, hyperacusis, and tinnitus, as well as inner ear injury, protection, and repair.  I have been involved in Hearing Research since the early 1990s when I was a graduate student at the Biomedical Graduate Group at the University of Pennsylvania (UPenn).  I have been profoundly deaf since birth and started wearing hearing aids AND speech therapy when I was 15 months old.  I went to the Lexington School for the Deaf in Jackson Heights, NY and then was mainstreamed into the NYC Public School System, which culminated with my entrance into Bronx High School of Science.  Afterwards, I matriculated at Harvard University, majoring in biology, and worked as a research technician at the Massachusetts Eye and Ear Infirmary for two years before entering UPenn.  Within a year after my college graduation, I began to interact with Deaf people and eventually became adept in American Sign Language.  So, I’m not limiting myself to just spoken and sign languages but I aim to maximize my efforts to obtain as much information as I can at both personal and professional levels.  You can learn about my perspectives on the effects of hearing loss on both personal and professional lives of mine via the-eagle-ear.com.