I can pass as hearing. With good lighting, low background noise, and a good night’s sleep I can follow and participate in small group conversations like any hearing person. Like nearly all deaf/hard of hearing (HoH), my ability to listen, speechread, and follow conversations decreases quickly with less light, accrued listening fatigue of the day (see post on How much listening is too much?), more background noise, additional people with quick back-and-forth banter, or unfamiliar accents (see post on Understanding unfamiliar accents). I’m also pretty good at bluffing.
<garbled speech>… nod and smile<garbled speech>Ho! The group is laughing now. Laugh a little — but not too much
<garbled speech>nod and smile …
I don’t sound as deaf as I am because of years of speech therapy to teach me how to pronounce sounds that I can’t hear. The message speech therapy delivers is that the deaf/HoH folks should work hard to sound as hearing as possible. The burden is on the disabled person to assimilate rather than for hearing folks to tolerate deaf accents (see post on Eloquence is Overrated). Until I met other deaf/HoH folks in graduate school, I bought into that myth. I worried a lot about how I spoke, and my own internalized ableism fueled the myth that if I just worked hard enough nobody would know about my deafness. I could overcome my disability. My view on speech has changed over the years and I now find deaf accents wonderful/familiar/comforting. Though I will admit to still having some worries about my speech when I give high-stakes presentations —that internalized ableism is a tough beast to tame.
So, the combination of my slight deaf accent, excellent bluffing skills, and the privilege of being able to follow well-lit conversations with low background noise may be why people sometimes seem to either doubt my declarations of my deafness or underestimate my degree of hearing loss. Most of the time I don’t really care how my hearing is judged, but every now and then folks decide to call me out for what they perceive as inconsistency between my acting like a hearing person and my statement of my deafness — they will say “You don’t sound deaf”, or they will even try to test my hearing. Their nosy and inappropriate questions remind me of a hearing test that I failed the summer before my senior year of college.
I was hired by a mining company to participate in secondary gold exploration in northeastern Nevada. We lived and worked in a camp several hours from the nearest town. My field partner and I were hired to collect and log the rock cuttings (broken bits of rock produced by drilling) from various prospects within the claim. If we saw some promising cuttings, we sent them off to be assayed for their gold content. The mining company was hoping to find some high-grade Carlin-type disseminated gold that would make it worth setting up a mine in this remote high desert locale. Spoiler alert: We never did find good enough gold at that location. But the company paid us well for that summer of exploratory work. This job meant that my field partner and I got to hike around in the rattlesnake infested high desert every day to retrieve cuttings from the drill sites. The drillers would move the rig every week or so to a new site that we had previously marked for sampling. I mentioned to my co-workers that I couldn’t hear rattlesnakes and ask them to warn me if they heard a rattle when we were moving though the brush. I also took care to stomp the ground when I ventured someplace craggy where rattlesnakes might lurk. While I knew that rattlesnake bites were treatable, I didn’t relish the idea of an emergency 2+ hour drive to the nearest medical facility.
After one long day, I was in camp and standing around chatting with my co-workers (my field partner and the camp cook) and suddenly their eyes opened wide and their mouths formed startled “O”s. They were stunned and clearly were no longer listening to whatever fascinating and captivating story I was talking about at the time.
“Look behind you!”
I turned around and 5 inches from my face was a writhing burlap bag. The bag was moving in all sorts of directions consistent with a bagged and very angry snake.
The drillers had decided to test my hearing loss and caught a rattlesnake in the bag. They wanted to see if I really wasn’t able to hear the snake. While I was babbling away, they snuck up behind me and held the bag inches from my head waiting for my reaction.
I learned a couple things from this. #1 Never trust drillers. #2 This experience also taught me that my lived experiences aren’t appreciated by most hearing people and some of them won’t trust my own assessment of what I can and can’t do. Sometimes they will test me to see if I’m ‘for real’. “Can you hear me if I cover my mouth?” Sometimes they will doubt my abilities. “You can’t accept this job because it involves visiting construction sites with heavy equipment that you won’t hear.” Sometimes, they will presume what accommodations I need without asking me. “Zoom has auto-captions, so I figured you were all set.” It is no wonder then that sometimes it is easier for deaf/HoH not to disclose their deafness and thereby avoid dealing with inappropriate responses. If we just work hard enough, we can pass for hearing and no one will know or ask anything.
But not disclosing my deafness isn’t safe for me. Not disclosing and working hard to pass as hearing is harmful to me in that I’m doing a lot of work just to stay in place and that impedes my ability to thrive. Just like I benefit from my field partner calling out to me when they hear a rattle, accommodations in my academic career allow me to participate more fully and avoid both harmful misunderstandings and grueling listening fatigue. This rattlesnake-in-a-bag experience prepared me for an academic career where my colleagues, fellow data loving scientists, want to see direct evidence of my invisible disability.
So, when I’m asked inappropriate questions about my deafness, I picture in my mind that writhing burlap bag. I’ve got this — after all, you are the one holding a bag with a pissed off rattlesnake.
The Mind Hears was excited to learn that Anne and Breanne are two deaf graduate students in the same School of Integrative Plant Sciences. So many of us navigate graduate school as the only deaf student in the university, much less the graduate program. So we caught up with Anne and Breanne to explore how having a compatriot in graduate school has impacted their experiences. We asked them these questions:
Breanne: I am a PhD candidate in Plant Pathology at Cornell University, and am researching the population genetics of a fungus that causes powdery mildew of grapevine. I have loved science since I was a little girl, and was inspired to pursue sciences due to all of the different rare diseases that have occurred in my family. I’ve always been fascinated by infectious diseases and molecular biology, and the idea of translating that to plant diseases and protecting our crops was very exciting to me for graduate school. I identify as DeafBlind, and was born in New York State with moderate to severe hearing loss; I lost my vision as a teenager due to the recessive genetic disorder known as Usher Syndrome. I began using ASL to communicate during my undergraduate years at RIT/NTID, but have since lost those skills. It has been hard being apart from a deaf community for so long.
Anne: I am a PhD candidate in Horticulture at Cornell carrying out research in viticulture, by evaluating impacts of canopy management practices on above and below-ground parameters in grapevines. I’ve always been very passionate about fruit crop production and hope to go into extension, to teach students in the vineyard or orchard about management practices, to develop my own teaching videos on all things fruit crop and wine related in ASL, and one day, possibly to own a farm winery. I was born profoundly deaf in Connecticut and grew up with SimCom (Simultaneous Communication), initially learning SEE (Signed Exact English), then later, ASL, when I improved my fluency during my postgraduate years in Colorado.
Tell us about your discovery that you were not the only deaf student when you started your graduate program.
Breanne: Day 1 during the School of Integrative Plant Sciences (SIPS) graduate school orientation I was wondering, “why does the interpreter keep looking at someone else?” If only you could hear my thoughts that day; I was so shocked (and thrilled!) when I pieced it together! Looking back, I have no idea who was presenting or what they were talking about. I was ecstatic to meet Anne that day, a fellow deaf woman and someone whose smile melted away the stress of that orientation day on this brand new campus.
Anne: It really made my day when I learned of Breanne — I got goosebumps when I learned that I wasn’t the only deaf person and just had to meet her. I am so proud of Breanne for pressing on, reading thousands of papers, looking at microscopes, advocating for herself to get her guide dog, advocating for others, and continuing to succeed in her program. And I love being able to just communicate with her in sign and not have to worry as much about my speech! She is probably one of the first Deaf, and first DeafBlind in academia at Cornell’s AgriTech campus in Geneva and is making a huge impact there. Meanwhile, I have been staying in Ithaca, where my research is, and have been working as a Graduate Community Advisor for the graduate, post-doc, and visiting scholar housing community on Cornell’s Ithaca campus. I have also been educating the residents in the graduate community, which is predominantly international students, about people with disabilities. These residents, whom I love so much (they spark so much joy), either have a lack of or a rudimentary understanding of people with disabilities, as their native countries either suppress or hide their disabled citizens. They have been incredibly open and have shared with me that their experiences as foreigners are in some ways similar: having to navigate American sociocultural norms and encountering miscommunication and misconceptions. Many of them have made a lot of effort to communicate with me when we had trouble understanding each other! It’s encouraging to see that. In this context, Breanne and I have shared our thoughts, feelings, and strategies for working with people who have not had exposure to the deaf and disability communities.
Tell us of other ways that having deaf fellow students on campus have impacted you.
Breanne: In our second year, Anne introduced me to a new third Deaf person on campus — a new law student who already had a PhD, Dr. Caroline Block! We had a group facebook message going and we shared our experiences with the handful of ASL interpreters being assigned to us. We found out that whenever one of us requested a different interpreter, Cornell Student Disability Services would trade our interpreters mid-semester. When personal style is the issue, it’s okay to retain the interpreter for another student, but that wasn’t the case here. These interpreters sometimes didn’t have the experience necessary to interpret doctoral level courses, would check their phones mid-lectures, and would not wear black clothing despite knowing I’m blind. Thankfully, the three of us decided to meet with Student Disability Services and demanded that all ASL interpreters adhere to professional policy, and that one interpreter in particular never be hired for any other Cornell student again. Also, please let me note that we’ve also had some amazing interpreters, ones that are proficient and root for us every step of the way in our PhDs.
I remember early on in my studies being so stressed from the commuting to and from the Geneva campus, the culture shock of attending this big Ivy League university, and having to try and remember if I had requested access services (and if so, which ones?) for this event or that lecture. However, the absolute hardest part was falling victim to ‘the hidden curriculum,’ the unwritten norms and unspoken expectations that many underrepresented minority (URM) doctoral students are not aware of. My mother was the first in our family to go to college and got her Bachelor’s degree when I was growing up, and then I was the first in my family to pursue a PhD. It seemed like every graduate student in my department had at least one parent who had a PhD. I did not have many close friends in my program, and I felt so alone. Honestly, I had just kind of accepted this fate, that “okay, this is Cornell, they don’t have Deaf students or a deaf community in Ithaca”, that I truly did not think I should try to change things. I eventually realized it wasn’t just me. Cornell was not set up to support us and we needed to work exponentially harder than our peers just to survive. Without having Anne and Caroline to talk to for mutual support, I would have continued to think that my failure to thrive was my own fault.
On days where I did not feel like continuing on in the PhD program, I would still get out of bed and try because I knew that I represented so many Blind and disabled people out there who are told to pursue a career that “suits their blindness.” This is something my own family and friends told me too. As a disabled person who’s made it this far, I feel it is my duty to pave the way and make it easier for those who come after me. Anne and I are both trailblazers. I didn’t really know what was expected of me in terms of my doctoral research, but it was obvious that this place wasn’t inclusive to people like us so I buried myself in advocacy. I was committed to making Cornell a better and more equitable and inclusive place to go to graduate school. I was elected to and served on the Presidential Task Force that was formed in response to horrible incidents of racial bias in Ithaca, I served as the Graduate and Professional Student Assembly (GPSA) Student Advocacy Committee Chair, I wrote the mental health & well-being section of the Graduate and Professional Community Initiative (the GPSA’s 5 year strategic plan, administration use it to inform the decisions they make for our community), I worked closely with other student leaders, administration, deans, and people in Cornell Health and was very successful.
However, I can honestly say that I’m not sure if I would have made it this far in the program if Anne weren’t here, starting a PhD in the plant sciences at the same exact time. Anne is the only other scientist I have ever been able to use ASL with at a Cornell event, and someone who was dealing with so many of the same struggles as me. Having her to validate my experiences is what kept me strong enough to self-advocate in the face of trial after trial. We both eventually passed our A exams (doctoral candidacy exams), and we both felt embarrassed about when we did it — as if there was an unspoken timeline that we did not achieve compared to our hearing peers. However, I firmly believe that what matters most is crossing the finish line and not how fast you got there. I know that we will both cheer each other on during our dissertation defenses and both be successful in passing those too. I cannot stress enough how knowledgeable and skilled Anne is as a viticulturist and scientific researcher. This plant sciences are blessed to have a woman like her pursuing her PhD in a lab and university that has global recognition, and any institution would be lucky to have the chance to hire someone who is both so scholarly yet so pleasant to work with.
Anne: Yes, I echo Breanne’s statements about our experiences. We had challenges with the interpreters initially. I have had several interpreters who are lovely people, but I had to ask them to be more professional (wearing black, etc). One of them kept violating professionalism and had been passed around among the deaf students, so, with the power of three outstanding deaf scholars, myself, Breanne, and Dr. Block, who now has a PhD and a JD, we collectively met with the Student Disability Services to ask that the interpreter be removed. Since then, the interpreting agency, when faced with an interpreter shortage, kept bringing them up, asking if we were okay with scheduling them if nobody was available. We all would decline and change our meetings to avoid that situation. We are grateful that Cornell Student Disability Services has changed a lot since then, with the hiring of a wonderful disability accommodation access specialist who made an effort to learn ASL and all about Deaf culture! This specialist has gone above and beyond, so that is a change we are very pleased about – they have been very easy for me to work with. Plus they have honored my request to work with specific interpreters and not once did they assign me to someone who is not a good fit for me. I was able to focus a lot more on my studies, since this communication specialist has been hired. My student disability counselor, who has a disability, is also fantastic, and together with the accommodation specialist and the new director, created the change we needed.
Also, Breanne has done outstanding work with the GPSA and Presidential Task Force, and the American Phytopathological Society (APS) conference committee, bringing a lot of much needed change. And this is something we’ve also noticed: there is the hidden curriculum, sociocultural norms, and much more that many miss, not only in the deaf/HoH+ community, but also those in the disabled, first gen, and other minority communities. We hope to see Cornell doing something about it, developing a workshop or two to address the hidden curriculum, so we have been bringing specific aspects to light through our social platforms. I have been blessed with people including my family and my advisor who brought the bulk of the hidden curriculum to light, but many others are not as lucky. So the pipeline in retaining STEM scholars is leaky as people drop out or change their career paths. Again, Breanne and I have conversed a lot through various mediums, brainstorming approaches to educate people while supporting each other. She and I have also been overcoming challenges in our respective PhD programs and cheered each other on when we reach milestones. I received a conditional pass on my A exam and did not become a PhD candidate until my fourth year, which I was very embarrassed about, compared to others in similar fields, yet Breanne really cheered me on. When she shares her accomplishments with me, I have so much pride and joy for her!
What other challenges have you found remain for you in grad school, despite having the support of deaf colleagues?
Breanne: Cornell in general – it is not a welcoming or inclusive place for people like us, or us specifically. We’ve had faculty that are supposed to support, advise, and mentor us practically turn their backs on us at certain points in our programs. Even our professional support system is fragile. Luckily our support has grown, our access services are far better, and we now have an ASL professor on campus, Brenda Schertz. I am very hopeful that ASL and the deaf community will grow here. With this, I hope every student can find the mutual support Anne and I found in each other.
Additionally, I have since received my first guide dog which has significantly improved my personal and professional life. People in my department seemed confused as to why I needed one, I barely even used my white cane. However, they didn’t see me fall off the steps of the stairs inside the plant science building during my graduate school interview, my heart rate spike every time I stood at the top of the stairs when all the light bulbs were out, or all the bruises I had from travelling to/from work and running errands. I was so fortunate to have advisors that sought education directly from me on life as a scientist with a guide dog and supported me. In the United States, service dogs are allowed in all public facing businesses, even in hospitals, but individual institutions and professors often bar students and employees with service dogs from working in the laboratory. The only time a service dog should ever be barred from a scientific lab is if it would hurt the integrity of the research itself (i.e. an experiment on bird behavior when birds see dogs as predators) or if the research could seriously harm the service animal despite them wearing similar PPE to humans and staying out the way as service dogs are trained to do.I am deeply grateful for Cornell Student Disability Services and both of my advisors’ full support in this area, but the stress was certainly still there. I could so easily be denied access to my lab space like so many of my blind and disabled colleagues. I will not stop advocating for changes in this space because I have always firmly believed that science is for everyone. How can we recruit and retain diverse scientists if you reject a freshman from taking your introductory chemistry lab course because they have a service dog to mitigate their disability? Anne and I frequently speak out about our frustrations that despite endless conversations about ‘diversity,’ nobody seems to value disability as part of the beautiful spectrum of diverse and underrepresented people we need to support in STEM, and we are trying to change that.
When participating in a panel discussion in the DEAF ROC conference in Rochester, NY in 2019 called, “Successfully Advocating & Maintaining Relationships with Access Services,” I learned about PhD students having uniquely assigned ASL interpreters who they were able to develop a close working relationship with. This situation allows interpreters to learn the subject matter as the students develop their expertise throughout the years, and allows for more seamless communication with advisors and labmates. It also removes the burden from Deaf students of trying to remember whether or not they have requested interpreters for an event yet, since interpreters essentially maintain their same meeting schedule. Bringing disabled people together to share experiences is crucial, because this arrangement is something I never would have dreamed of asking for, yet would clearly benefit most Deaf PhD students. I firmly believe that this should become the norm for graduate school education, where 4-6 years are spent working tirelessly to become an expert and create new knowledge in a highly specialized field. In addition, I also look forward to continuing to work with Anne and other disabled colleagues, and pursuing a career that allows me to make drastic changes to make STEM more accessible, equitable, and inclusive for people of all historically underrepresented and marginalized backgrounds.
Anne: While we are very grateful for this opportunity to pursue a PhD at one of the world’s most renowned universities, Cornell generally needs a lot of advocacy to be kept accountable in adhering to its “any person, any study” motto. There is a lot administrators don’t know that we d/Deaf, DeafBlind, HoH, and other members of the disabled community continue to try to educate them about. There are things that we need in order to succeed, and we find ourselves advocating a lot for our needs to be met, and for policies to be put in place for future students so they can focus on their studies more. Unfortunately, there are still some people who question our abilities to do something simply based on our disability or hearing status. I have been lucky to be surrounded by excellent people in the viticulture and enology industry who are working to make the field more accessible. Breanne and I constantly have to remind people to look at the person, their passion and perseverance, as well as what they bring to the table, and not accept stereotypes held by the world. There are a couple of valuable resources already available including a wonderful paper done by our colleagues in Ecology and Evolutionary Biology (EEB) discussing strategies for at-risk scientists, and while they are helpful, there is still a gap when it comes to the deaf/HOH+ communities. I look forward to seeing a time when these gaps are all filled!
Due to recent racism and bias incidents, people at Cornell are beginning to open their minds to issues that disabled scholars too have been facing. Since we started in 2016, we have been advocating for captioning or transcriptions for podcasts and videos, contacting many clubs and departments, especially Cornell’s own Diversity and Inclusion office. Now Cornell does that by default much more often than they used to. There is still work to do but I am pleased with the progress we have made so far. I have been working with Cornell Dining to encourage them to develop alternative ways to order food, such as providing a paper and pen. While they listened to me, they decided to develop an app, “Get Set”, which allows students and faculty/staff to order ahead of time. It is a wonderful idea, however, there are people who don’t use smartphones and paper and pen are still not available. So that is a work in progress.
Breanne and I plan to co-author a paper to share our experiences of working with deaf/HOH + scientists, especially those with intersecting identities, to provide a framework for future mentors and scholars One thing we will highlight is the need for a designated interpreter who is to be assigned to that student only, going with that student everywhere, as needed, and to be on call for last minute meetings, like statistical consulting drop ins. We would love to see more Black and other minority deaf entering Cornell and we will advocate for the assigning of interpreters who are culturally similar e.g. Black interpreters, upon request. It is very encouraging to see the changes that are occurring.
This is part 2 of an autobiographic pair of posts by Stephen Klusza about his decision to get cochlear implants in graduate school. You can read about his life up to his decision in part 1. This multimedia post includes a video at the bottom of the page with images and excerpts of songs that express Stephen’s journey.
Hello darkness, my old friend,
I've come to talk with you again,
Because a vision softly creeping,
Left its seeds while I was sleeping,
And the vision that was planted in my brain
Within the sound of silence….
- Simon and Garfunkel “The Sound of Silence”
Within the past decade, I have occasionally remarked that if I were born 50 years earlier, I would have been out of luck. After losing the rest of my hearing, I felt that I was past the point of no return. In an effort to leave no stone unturned, I went to see a specialist at the Mayo Clinic in Gainesville, who ordered an MRI to determine the cause of the loss. Although the radiologist report came back with no findings, my specialist looked through it more thoroughly and found that my vestibular aqueducts were malformed in my inner ear on both sides. They were partially functional but prone to collapse at any time. Then, he said that I would be a good candidate for cochlear implantation. Even in the late 2000s, I had never heard of cochlear implants (CIs), despite my many previous visits to many audiologists and ENT doctors. I was stunned to learn that something could bring my hearing back. It all seemed too good to be true – and it was.
The doctor presented many caveats and uncertainties about the procedure. The process is irreversible, in that you lose any residual natural hearing upon surgical implantation. The surgery has a small risk of facial paralysis because of the proximity of facial nerves to where they drill to access the implantation site. The other factor weighing on my mind was the increased visibility of the processors compared to hearing aids. I had always worn behind-the-ear hearing aids that were visible with my short hair, but I still wished I could completely blend in the crowd and be left alone from all the stares and whispers that I had experienced all my life. Wearing hearing aids or cochlear processors was never a source of shame for me. I was simply tired of being a spectacle. I was tired of working much harder than hearing people just to be worthy of the furthest seat at the table. I was tired of persevering against all odds for a world that treated me as lesser than my hearing colleagues.
My pain is self-chosen
At least, so the prophet says
I could either burn
Or cut off my pride and buy some time
A head full of lies is the weight, tied to my waist
The river of deceit pulls down, oh oh
The only direction we flow is down
Down, oh down….
-Mad Season "River of Deceit"
I did not have a magical moment of rational clarity that led to my decision to get implanted. In my vulnerable state of self-preservation, I simply clung to the tiny slivers of hope that things might somehow get better with the implant. My first surgery (left ear) was scheduled during Christmas break to allow for recovery from the invasive surgery. My parents visited for a couple of days to help me get through the worst of the post-operative trauma from the outpatient surgery. I had a reaction to the anesthesia and severe dehydration led to nausea, vomiting, vertigo, and migraines from the tightness of the head bandage. My only respite from the pain was formless sleep.
Every Christmas, I would go with my parents to visit my grandmother, but I was unable to do so this time. She completely understood but it broke my heart that because of my surgery, she would not be able to see me or my parents that year. My parents spent a lot of time and resources to help me recuperate. I was more distant in my interactions with everyone, including my dog Honey. Given that we went on many daily walks and enjoyed play time whenever I was home, I can only imagine the puzzlement she felt when my demeanor changed, when I largely stopped doing those things with her. It is something I regret to this day because I lived by myself and she was alone whenever I wasn’t home, and there was no way that she could understand what was going on. In retrospect, I sometimes wonder if guilt was the deciding factor for me to get implants. There was a chance that implants could bring back some semblance of the life that I used to have with my family and the few friends that I had. I was even willing to put myself through more pain and uncertainty just for the chance to hear Honey’s grumbles and barking when she didn’t get her way (since I spoiled her rotten).
A long December and there's reason to believe
Maybe this year will be better than the last
I can't remember the last thing that you said as you were leaving
Oh the days go by so fast
And it's one more day up in the Canyons
And it's one more night in Hollywood
If you think that I could be forgiven
I wish you would
- Counting Crows “A Long December”
My first activation was mostly typical of other adults who have had cochlear implants – voices sounded like robotic chipmunks and high frequencies were like icepicks to my ears. Music sounded like washes and drones of static, like a detuned radio unable to tap into the specific frequencies. The doctors counseled me beforehand that it would take time for sounds to make sense. I understood what they meant, and accepted this logically, but nothing can ever fully prepare for you for how your body reacts to situations of uncertainty. My brain became a battlefield between the unconscious and the conscious, with the dueling synapses lobbing salvos of emotion and logic at one another in their pareidolic attempts to find answers within random patterns.
Here, there's no music here
I'm lost in streams of sound
Here, am I nowhere now?
Wherever I may go
Just where, just there I am
All of the things that are my life
My desire, my beliefs, my moods
Here is my place without a plan
– David Bowie “No Plan”
Towards the end of the following summer, the residual hearing in my right ear disappeared, which made me eligible for a second implantation. The only surgery time available was right before Christmas and I had to call my grandmother and tell her that I could not see her again, and that I was sorry. She wanted the best for me and assured me that it was okay. I resolved to make sure that nothing would get in the way of me spending time with my grandmother for the next Christmas. Unfortunately, she passed away before I could do so I could not fulfill her wish to see me graduate. I dedicated my doctoral thesis in her loving memory.
Time can bring you down, time can bend your knees
Time can break your heart, have you begging please
- Eric Clapton “Tears in Heaven”
It took me 2 years, from hearing loss to CI rehabilitation, to get to a place where I could listen to and enjoy music again and have conversations with people in noisy environments. When I was implanted in my other ear, recovery from was just as rough as the first time, but activation in that ear took a lot less time to program as my brain already knew how to process electrode signals. For a moment, I thought I was hallucinating when music I listened to would pan between the left and right channels. However, I soon realized that I was experiencing life in true stereo for the first time. After so many years, I could finally detect the direction sound was coming from, which gave me the strength to continue with my rehabilitation.
Altogether, I wound up spending 7 ½ years in graduate school with a minimum of papers, which many would consider a death sentence for academia prospects. Still, I forged ahead and secured a postdoc at the University of North Carolina, Chapel Hill and spent several years studying epigenetics in fruit flies. At the time I was applying for grants, several agencies included a section where applicants could explain discrepancies and life events that may have affected their publication record. I detailed my struggles in those sections and sent in my applications. I did not succeed in getting funding from those grants. I remember one of the reviewers remarking how I needed to publish a lot as a postdoc or I would not make it in academia, with no mention whatsoever of the life events that I went through. In knowing how reviewers do not read everything in a proposal, I question if reviewers actually read the documentation section and take into account obstacles that happen in people’s lives. In any case, it was clear that continuing in this traditional academic career path would be nothing more than going through the motions, with one foot in front of the other.
And I'm stuck in a shack down the back of the sea
Oh, and I'm alive and I'm alone inside a sick, sick dream
Oh, is it me, is it me that feels so weak?
I cannot deceive but I find it hard to speak
The hardest walk you could ever take
Is the walk you take from A to B to C
- The Jesus and Mary Chain “The Hardest Walk”
For the majority of my life, I never felt like I truly belonged anywhere. I was bullied by hearing students and adults throughout my adolescence. Those who did not approve of the bullying simply stood by the sidelines and averted their eyes. Perhaps I could have looked back on these times with more fondness if I was more involved with the deaf community. That never came to be, as I was told through the grapevine that deaf members of my family were upset and angry when I first got hearing aids as a young kid; they were even more upset about my decision to get cochlear implants. Cochlear implantation continues to be a contentious issue for many deaf people, who view it as a betrayal and rejection of deaf community and culture. I know now that there are many deaf people who welcome those with cochlear implants, but as a despondent deaf kid coming of age, I felt that it was only a matter of time before I would have been rejected from the deaf community as well, so I rejected the deaf community first.
Instead, I embraced the solitude that my deafness foisted upon me and adjusted my social habits in how I interacted with hearing people, for better or worse. Looking back, this defense mechanism had huge ramifications on my social skills that greatly influenced the future trajectory of my life, including my career. At one time, I thought that science research would be perfect – surrounded by dusty tomes and papers on a cluttered desk, my mind preoccupied with fantastic biology puzzles, and a minimum of human interaction. Of course, now that I am a scientist, I see that this was a pretty naïve viewpoint on my part. I had hoped that academia would be this enlightening, welcoming, and supportive place that I had always imagined it to be. I sacrificed two decades of my life in this endeavor, only to be told implicitly that I wasn’t worthy enough for future consideration as an academic. It was seemingly yet another rejection from a community that I had sought very hard for acceptance from…..
Don't come around here no more
Don't come around here no more
Whatever you're lookin' for
Hey! Don't come around here no more
-Tom Petty “Don’t Come Around Here No More”
or so I thought. I am now an Assistant Professor of Biology at Clayton State University, a public undergraduate institution (PUI) with wonderful and caring faculty and students. I have found colleagues and friends who share my values in building a better STEM for everyone through the Open Life Science organization and the Genomics Education Partnership faculty collective. I am married to the most amazing and wonderful person that I have ever known. I am here now, writing this blog post and telling my story for The Mind Hears. If you had told me five years ago that this world would become real, I would not have believed it. Yet here it is, and for the first time in my life, I am holding on with both hands and never letting go. For the first time ever, life looked a little bit brighter.
My life has been extraordinary
Blessed and cursed and won
Time heals but I'm forever broken
By and by the way
Have you ever heard the words
I'm singing in these songs?
It's for the girl I've loved all along
Can a taste of love be so wrong?
As all things must surely have to end
And great loves will one day have to part
I know that I am meant for this world
- The Smashing Pumpkins “Muzzle”
Dr. Stephen Klusza is a developmental geneticist who received both his B.S. and Ph.D. degrees in Biological Sciences at Florida State University and performed research in fruit fly epigenetics as a postdoctoral researcher at the University of North Carolina at Chapel Hill. As an Assistant Professor of Biology at Clayton State University in Morrow, GA, Dr. Klusza is interested in creating accessible and equitable low/no-cost educational resources and research opportunities to increase accessibility in education for all students. He also serves as the current Chair of the Diversity, Equity, and Inclusion Committee for the Genomics Education Partnership and advocates for disability representation in STEM and academia. @codebiologist
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.
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.
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.
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 tothem. 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.
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.
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.
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.
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.
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.
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.
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.
The new year brings a fresh start to our lives; it’s a natural time to reflect on the year past and make plans for the coming year. In what is becoming a The Mind Hears New Year tradition (see posts from 2019 and 2020), we have updated our list of recommendations for making your workplace accessible. The listing now includes best practices for remote meetings, a format that dominated our professional interactions in 2020 and will play a role in ‘normal’ operations going forward. While many presume that remote work increases accessibility for deaf/HoH, this is not always the case (see post on suddenly remote teaching and post on accommodating a pandemic). You can view and download the full list of recommendations for making your in-person and remote workplaces accessible for your deaf and hard of hearing colleagues at this link. Here we outline the best approach for increasing workplace accessibility and provide links to blog posts that explore particular aspects in detail.
Universally design your workplace: Our spaces become more inclusive for all when we improve access for any subgroup of our community. Consequently, by increasing the accessibility of our workplaces for our deaf and hard of hearing colleagues, we create a better workplace for everyone (see post on the impact of the Mind Hears). This includes hearing folks who have auditory processing disorder, use English as their second language, or are acquiring hearing loss during their careers. Chances are that someone in your department has hearing loss, whether they’ve disclosed this or not, and will benefit from your efforts to make your workplace more accessible (see post on Where are the deaf/HoH academics). This is why you should universally design your workplace now and not wait until someone who is struggling asks you to make modifications.
Sharing the work: With a google search you can find several resources on workplace accessibility for deaf/HoH employees, such as the Hearing Loss Association of America’s (HLAA) very useful employment toolkit. One drawback of these resources is that nearly all of the suggestions are framed as actions for the deaf/HoH employee. While deaf and hard of hearing academics need to be strong self-advocates and take steps to improve their accommodations, our hearing colleagues can help us tremendously by sharing the work and not expecting us to bear all of the burden of creating accessible workplaces. Speech reading conversations, planning accommodations and making sure that technology/accommodations function is never-ending and exhausting work that we do above and beyond our teaching, research, and service (see post on making an impact at high stakes conferences, post on conquering faculty meetings, and post on teaching very large classes). Your understanding and your help changing our workplaces can make a huge difference to us. For example, if a speaker doesn’t repeat a question, ask them to repeat, even if you heard the question just fine. The people who didn’t hear the question are already stressed and fatigued from working hard to listen, so why expect them to do the added work of ensuring speakers repeat questions (see post on listening fatigue and post on the mental gymnastics of hearing device use)? Repeating the question benefits everyone. The changes you make today can also help your workplace align with equal opportunity requirements for best hiring practices (see The Mind Hears blog posts about applying for jobs when deaf/HoH here and here).
One size doesn’t fit all: If a participant requests accommodation for a presentation or meeting, follow up with them and be prepared to iterate to a solution that works. It may be signed interpreters (see post on working with sign interpreters and post on networking with deaf colleagues who use interpreters), oral interpreters, CART (see post on Captions and Craptions), or FM systems (see post on Using FM systems at conferences). It could be rearranging the room or modifying the way that the meeting is run. Keep in mind that what works for one deaf/HoH person may not work for another person with similar deafness. What works for someone in one situation may not work at all for that same person in another situation, even if the situations seem similar to you. The best solution will probably not be the first approach that you try nor may it be the quickest or cheapest approach; it will be the one that allows your deaf and hard-of-hearing colleagues to participate fully and contribute to the discussion. Reaching the goal of achieving an academic workplace accessible to deaf/HoH academics is a journey.
Want to be a better ally and make your workplace accessible for your deaf and hard of hearing colleagues?Follow this linkto read our list of recommendations. We welcome your comments and suggestions either to this post or directly within the document at this link.
Making it as a deaf/hard of hearing (HoH) academic can often feel like a game of whack-a-mole. Between research activities, teaching duties, and that large nebulous category ‘service,’ communication challenges lurk around every corner. Some I can troubleshoot fairly quickly— i.e. arranging a classroom so there is walking space between desks and I can approach my students to better hear them (mole whacked!). Other challenges have required a few more tries, but I’ve eventually figured out viable solutions—i.e. belatedly acquiring an FM system was a game changer when it came to group discussions of papers (mole missed, mole missed, mole whacked!). But there is a situation that I have not yet been able to master, even after many, many years: the departmental faculty meeting.
I had less than a passing knowledge of that special faculty obligation that is the Departmental Faculty Meeting when I started out as an assistant professor. I’d heard some friends and my spouse—people who’d gotten faculty positions before me—mention them, usually accompanied by eye rolls. But I didn’t really have any expectations about what these meetings entailed or what my role in them might be.
Cue over to my first faculty meeting as a deaf/HoH faculty in a predominantly hearing institution. I walked into a an overly large room (overly large for the number of people we had) that looked somewhat like this:
We were 15-20 faculty seated in a classroom meant for over 40, with everybody seemingly intent in maximizing their distance from all others. After an hour of feeling like a bobblehead as I desperately twisted my neck trying to speech read my department chair in front and my colleagues in all corners of the room, I came to three conclusions:
1. Faculty (who would have thought!) are just like undergrads, and will beeline for chairs in the last rows of a room
2. Important stuff got discussed in faculty meetings (I think I caught some words that sounded like budgets and curriculum…)
3. I was dead meat, because I could not follow anything that was being said
So I went home and cried. My first year as an assistant professor, I cried after every single faculty meeting. Granted, we didn’t have that many faculty meetings back then, but enough to confirm my deep-rooted fear that I was certainly not going to survive this career path. It was clear to me in my first year that faculty meetings were whipping me soundly; if I were keeping score I would call it: Faculty Meetings 1–Ana 0.
Of course the obvious thing to do would have been to ask my department chair to change the setup of the faculty meetings. After all, my colleagues knew I was hard of hearing and relied on hearing aids for communication. But I was terrified that if my department caught whiff of how much I struggled to hear, this would sow doubts about my competence as a teacher and doom my tenure prospects. Besides, although I had a long history of self-reliance, I had zero experience in self-advocacy. Among my many thoughts were “What in the world falls under the ‘reasonable’ umbrella in reasonable accommodation?” and “oh, wait, I’m not a US citizen, does the ADA [American with Disabilities Act] even cover me?” (I still don’t know the answer to this one).
Towards the end of the academic year I found some courage to request CART (Communication Active Real Time Translation) for a final retreat-style faculty meeting. The captionists were to sit next to me and type out all discussions. My chair knew about the CART, but I (foolishly) didn’t alert the faculty. At the beginning of the meeting, a colleague expressed discomfort about the presence of unknown people in the room (the captionists). Though an explanation brought a quick apology, I felt marked. Added to the captioning time lag that at times jarred with what I could hear, I scored another loss: Faculty Meetings 2–Ana 0.
My second year brought a new department chair, a tiny increase in self-confidence, and also an increase in the frequency of faculty meetings. Aaagh! I finally resolved to approach my chair and request that faculty be seated in a round square table format during meetings so that I would have a better shot at speech reading. Simultaneously, I acquired a new FM system and a transmitter with an omnidirectional microphone — a forerunner of the one pictured here. I would place it on the center of the table and voila! OK, so it wasn’t quite 100%, and I was still missing most of the banter and jokes, but jumping from 50 to 90% comprehension (These are completely unscientific numbers. Naturally, there’s no way for me to ever tell how much I’m missing; my estimate is based on my confusion level at the end of meetings) felt wonderful. This was it! I was going to nail this faculty thing! New score: Faculty Meetings 2–Ana 1!
Then my department grew.
Okay, I get the fact that department success is gauged in part by growth. And yes, improving faculty-to-student ratios is always a good thing. But growth meant that in order to sit all of us in rectangle we were now sitting like this:
Ummm, with a gaping hole in the middle, where is microphone transmitter to go? I started putting it next to me, but of course this makes it much less likely to pick up voices from those sitting farther away. I considered going back to CART, but at this point I had had my first kid and often had to rush out of faculty meeting before the end in order to make it to daycare pickup; I couldn’t bring myself to subject others to my sometimes ad hoc schedule… so I muddled along and considered this round lost. New score: Faculty Meetings 3–Ana 1.
Fast forward a few years—the department kept growing. We were now meeting in a large room that combined my two meeting nightmares: square table arrangements with a central hole AND faculty sitting in rows (we no longer all fit around the square). Even worse… recall that faculty are just like undergrads….most actively choose to sit as far away from the center/front of the room if given an option. So much for our “round table.”
I started to cultivate the attitude recommended by some of my hearing colleagues… faculty meeting, bah, waste of time, place where people go to hear themselves talk, nothing happens there that couldn’t be solved more quickly through email….bah! OK, so attitude was my new weapon armor. By my calculations we were now at this score: Faculty Meetings 4–Ana 2. Ha! A comeback!
A few years later, further department growth and another new chair. But I told this one about my difficulties following discussions whenever we sat in rows. Alas, we were now too many faculty to sit in any sort of rectangular format that would fit in a room. I had started in a department with around 20 people and we now had more than 50! To maximize my visual contact with faculty in a room, we came up with this pretty funky rectangle with peninsula shape. Ummm… perhaps we can call this score: Faculty Meetings 4–Ana 3? We would have patented this design, but there were two problems. The perimeter of the room (around the rectangle) still had to be lined with chairs in order to have enough seating should everybody decide to show up. And see observation #1 above: faculty are just like undergrads. This means that people prefer to take the perimeter spots before they take any rectangle spots. And it turns out that people prefer to STAND IN A CORNER of the room before taking ANY of the peninsula spots in the center. New score: Faculty Meetings 5–Ana 3.
So we get to where we are today. I catch myself wondering how traitorous it is for me to dream of a smaller department while also cultivating a blasé attitude towards faculty meetings so that I release myself from feeling obligated to try and follow the discussions. In a way, this outcome is an anthesis of what a blog post on thriving in academia with deafness should be. Over a decade of trying to find a solution for a way to participate effectively in what should be a routine part of faculty life has led instead to something that resembles an arms race and I have no solution to offer. At the same time, however, this post on getting by in academia with deafness portrays pretty effectively the reality of trying to adjust to shifting communication settings as a deaf/HoH academic. I hesitate to sound as if I’m advocating “managing” as opposed to “thriving” when it comes to facing the fluctuating demands of academic life, but sometimes, while we’re whacking those moles, “managing” is what we can do.
Pandemic addendum: I wrote this post before the Covid-19 pandemic struck, never imagining the ways in which my faculty meeting odyssey would be upended yet again. The thought of meeting in-person with 40-50 colleagues now seems so distant, and new “moles” have appeared in our now virtual faculty meetings (ahem…thinking here of all those who choose to speak with their zoom cameras OFF). Yet I’ve also picked up some new management strategies in the interim… For example, Michele’s recent post points out some of the silver linings for deaf/HoH academics in working from home. And from Paige Glotzer’s profile I’ve now learned of the existence of Catchbox throwable microphones; if when life returns to normal, could this be my new faculty meeting strategy? I can’t wait to see…